The MacDonald Family

The Uncertainty

2012-01-05T19:07:00.000-08:00

This morning I walked into Annie's room and she was already awake with a sweet smile on her face. She had slept all night long and had gotten her full feeding at night. Hooray for a beautiful morning. We got dressed, into the car and dropped the kids off at school - Annie was all smiles and happy noises - so was mom! We got home and got right to work on a new app that I had put onto the ipad - Annie loved it and was doing fantastic! After about 15 minutes she got sleepy - time for her morning nap and my morning workout! Honestly, could this day BE any more perfect? Annie wakes up as I'm getting out of the shower and we start working on her stretches - Annie is so happy that now she is laughing out loud and we are just having a fantastic time. After stretches we get on her braces and hop back in the car to pick up Gracie. This is where things take a turn. Out of nowhere Annie starts moaning and grinding her teeth. I pray that she holds on for just 10 minutes so we can grab Grace and get out of the school before the full screaming fit starts - I know it's coming. We make it, but the entire car ride back home was Annie screaming and kicking and Grace and I telling her over and over "It's OK Annie, we're almost home". Annie's fit continues at home, I try to ask her what's wrong but her gaze is turned down, she won't look at her yes/no cards, I'm left to guess. I go down the insanely long list of issues and give her every sort of comfort I can. She refuses food, refuses to drink, TV, meds, snuggles, music, nothing calms her. For my sanity as well as Gracies (and our ear drums) I take Annie upstairs into her bed where she continues to scream, kick and cry for 45 minutes. When I just can't bear to watch through the monitor any longer I go upstairs scoop her up and take her back to the couch so I can try again to comfort her. She kicks, screams, writhes in pain, bites, grinds her teeth and eventually calms down, exhausted from the fit, she passes out on the couch in her special spot.

Who could have guessed that such a beautiful morning would have such a terrible afternoon. The uncertainty of every moment is one of the hardest things to deal with. The unexplained moments of joy and laugh out loud happiness I'll take, but the unexplained moments of pain and suffering I could do without. I'm left to wonder what caused the pain, where is the pain, is this really pain? Although it looks like it maybe it's frustration or sadness? I really don't have a clue and because I don't have a clue as to what it is there's no way for me to help her through it. I've said time and time again that I will not let Annie's behavior dictate my attitude but it's much easier said than done. When she's happy I'm thrilled and when she's in pain I'm in agony. I'm not sure I'd be a very good mom if I could watch my child suffer and then just shake it off, although there has to be a happy medium here.

As Annie sleeps on the couch I take a much needed mental break and wonder what's in store for the rest of our day, what will she be like when she wakes? How will she feel at dinner and what time will she finally settle down for the night? Nothing is ever the same, nothing is ever predictable, anything can change at any moment without any notice and there is nothing that I can do about any of it. Such a hard thing to deal with. I remind myself that there is no joy without pain, I just wish there was some distance between the two and it wasn't a constant back and forth minute to minute. I press on knowing that as much as I'm hurting my baby is hurting so much more. I think of that sweet, precious smile and that infectious giggle and I know that they will return soon and will be even sweeter having gone through the pain. Annie's birthday is tomorrow, I'm praying her day is filled with so much happiness that the pain can't touch her.

Why Me? Why Not?

2011-12-30T07:57:00.000-08:00

It's funny, we started out this journey wondering "why me?", "why us?", "why sweet Annie?" - she was so perfect, so complete - our first baby girl, a little sister, a boy and a girl just a year apart, WOW, were we blessed........ and yet, we didn't quite know it.

Almost 7 years ago when Annie was born we should have thought "why us?" - "Why did you bless us so abundantly Lord?". Nope, those words were never spoken. Yes, of course we were thrilled, of course we thanked God for our little family, but we sort of expected kids who could walk and talk. We thought for sure we would have kids who would have melt downs or who may not have the best of manners, maybe even kids with allergies or other inconveniences, but it never crossed our minds that maybe we would have kids with seizures or g-tubes or orthotics or life threatening conditions. We never thought that we would need to thank God that our child was breathing - after she turned blue and was raced to the ER over and over again. We never thought we would have to thank God that there was a medicine that could stop our daughter from hyperventilating because she was passing out so much from lack of oxygen and dehydration. Never did we think that we would have to praise God each and every morning just because He graced us with another day with our sweet daughter. When holding our little newborn angel we just thanked God that He had "delivered" - He gave us exactly what we wanted and expected - a healthy baby girl. We never questioned it, we just thanked Him.

Boy were we nieve. The sicknesses came, the development became delayed, the testing started and we became desperate. We started begging and pleading with God - please, let this be an easy fix. Please let this be a season, not a lifetime. Please God let there be medicine that can help her. We want, want, want, and expect, expect, expect. What happens when we don't get what we expect to have? When what we pray and plead for is something that is so natural and easy and expected for everyone else that its taken for granted?

We never ask "why me?" when good things happen but we are so quick to ask "why me" when bad things come into our life. Why? Are we so selfish that we think we deserve everything to be handed to us? Do we honestly think that we are so divine that bad things can't touch us? I don't know why God chooses certain people to give a "wake up" call to. I don't know why He chose me, my family, my Annie, but I do know that I have been given an amazing gift. A gift that I will always be thankful for, a gift that I will NEVER take for granted. I have a child who is unable to do 1 single thing for herself, a child that is so helpless that every single aspect of her daily living has to be conducted for her. So many things that are typically taken for granted I now praise God for.

I try not to ask the dark "why me" question but when days get rough I admit, I do go there. The majority of my days, however, are spent asking God "why me? Why did you bless me so abundantly" and you better believe I praise God every single morning my children wake just because they are breathing and thriving.

Job 2:10 "What? Shall we recieve good at the hand of God, and shall we not recieve evil?"

It is in this same "why me Lord" attitude that we read the following research.

http://rettsyndrome.wordpress.com/2011/12/22/the-x-factor/

I honestly cannot believe that God has blessed us with such amazing research and has brought us so close to a cure for our Annie. I know that she may not be cured in this lifetime, that only God knows when, exactly, He will grace us with her ability to walk, talk, and voice her opinions, thoughts and her dreams but I do know that I will continue to ask God "why me? Why us? Why Rett Syndrome? Why have you decided to bring THIS disease so close to a cure?" and in a perfect time I will ask "Why did you choose to bless MY families life with such an amazing miraculous cure?". Until then I will continue to praise Him for what I do have - and that is far too much. Happy New Year friends!

Truth in the Tinsel

2011-11-25T18:13:00.000-08:00

One of my favorite things about homeschooling is looking around through blogs of other home schooling moms. I am not a very creative person so I LOVE when other's post about a really great craft or a fun, creative way of teaching so I can take the idea and use it with my own kiddos - weather its teaching Annie something new or just having some fun with all 3 of them. This is exactly what I was doing last week over at 1+1+1=1 when I was reading about Truth in Tinsel - An Advent Experience for Little Hands. The name intrigued me because I am always looking for ways to steer my kids in the direction of Jesus at Christmas time and away from Santa and presents. So, I dug a little deeper and LOVED what I saw.

The book starts on Dec. 1 and runs through Dec. 24. Each day consists of 5 parts: The first part is a clue, the second is a scripture verse, the third is an ornament craft, the fourth is a discussion and the fifth is extras. Through this advent experience our family will go through the whole story of how God gave us His very own Son - the most amazing story ever told! The book is incredibly organized and detailed. It's an ebook so there are hyperlinks to the scriptures and all the templates for the crafts are right there on your desktop. I've looked at a few of the ornaments and have already come up with ways to adapt them for Annie, not to mention all the opportunities we will have to use her computer to communicate about our lesson. I've already decided that instead of having the kids read the "clue" for the day I will have Annie say the clue with her computer. I'm so excited to start this tradition with my kids. I think we will start by buying a small tree to set up in the basement that we can fill with all the ornaments we make. I encourage you to check it out here: Special Black Friday price is only $2.99! But don't worry, if you miss that price the regular price is just $4.99!

Home Schooling

2011-11-04T20:11:00.000-07:00

I'm thrilled to report that home schooling Annie is going GREAT! We are both still alive and well :) Seriously though, I'm actually quite shocked to say that things are going so well. I've had homeschooling on my heart for years but I don't trust my heart, I'm a total control freak and I was really doubting that this whole home schooling thing was just something else I could control. While that may be true to some degree, it is also very true that Annie's school setting was incredibly unhealthy (a recap here). So, the homeschooling bit won out and I'm so happy that it did.

Annie and I are enjoying a much more relaxed atmosphere and the entire family is enjoying a much happier, calmer household. I can't tell you how liberating it is to not have to research, gather professionals, and meet to battle the school for Annie's basic human needs (which was happening almost weekly). To not have to beg someone or spend the money on an advocate or lawyer to get someone to help Annie go to the bathroom, eat with her peers or .... "gasp"..... spend some time in a gen ed classroom - is not only an enormous chunk of anxiety lifted off of our shoulders but also a very large cost savings for us.

The BEST news - Annie is flourishing! Our family has seen a much happier Annie and screaming fits are at an all time low. Everyone around her has seen a difference, her "buddy" for bible school has noticed a huge change in her social activity and a much better engagement of her surroundings and art projects that wasn't really there before. I attribute a lot of this to her now being surrounded by people who believe in her, people who believe she is an intelligent little 6 1/2 year old girl trapped inside a body that doesn't work.

Recently I have come across 2 awesome things that describe Annie to a T. The first is the picture above and the second is a quote from an article that I recently read about Maisy, a little girl battling rett syndrome: "Information is taken in normally, researchers say, but it can’t come out". Information is taken in normally - normally, did you read that? Normally! That was always the point I was tying to make with people in education. All of her teachers, therapists, social workers, even her advocates wanted to get it through to me that Annie doesn't learn like typical children learn and that is simply NOT the case. This amazing child is taking everything in, she has been learning everything the typical way that any other kid does for her entire life. The challenging part is to get it OUT but it IS going IN! No special teacher, special curriculum needed - solid proof for full-inclusion that was denied to us year after year. My heart aches - not for Annie, she is in a better place, she had a family that believed in her and had the resources to home school her - my heart aches for the kids who are being told they "can't" over and over and over. The kids that are told they have no business being with other kids their age because they have nothing to contribute. The children who are denied augmentative communication systems because the school feels that it will be wasted on them. My heart aches for these kids. I imagine they stay strong for a few years and then they start to give up. If there wasn't a cognitive disorder to begin with on will certainly be created in these very intelligent children that have bodies that don't work. What a shame, what a waste, what narrow minded people we can be.

I'm not only pointing the finger at people in our district, but also at myself. I believe in Annie 100% but she has never been formally taught many things so when I started home schooling her we started at a pretty basic preschool/kindergarten level. We started using a wonderful program that we found online called "Ready2Read" By Annie Moffat. I saw this online and instantly thought - this is GREAT! Colorful, easy to adapt - perfect to teach Annie how to read.

It took us a few weeks in September to actually get down to business, we were busy getting James and Grace settled and then just enjoying some calm time and trying to figure out a schedule - when would be best to learn (turns out Annie likes to relax and nap all morning, come 11am she is good to go). But once we got going it was clear that Annie already knew what I was teaching her. I worked very slowly, the 1 week lesson I stretched into 2 weeks and I went over and over words believing that insesant repetition would be the key to Annie learning. Until one day Annie was irritated, looked at her computer and told me "easy" "slow". I realized then that I was just like the public school I pulled her from. I was using my own doubting and quizing over and over to make sure that Annie knew what I was teaching when all the while she was telling me to move on. Sooo, that's what we've done, we have moved on.

Annie has gotten through 3 lessons in the Ready2Read curriculum and has continued to be restless, so the other day I pulled out a random stack of sight word flash cards, we hadn't worked on these before but she was asking for something more challenging - to my surprise Annie got 10 out of 10 right! Clearly she knew these words. I moved on to addition (we have worked so hard on literacy that I didn't give a second thought to other subjects so we hadn't gone through these either) turns out Annie knows how to add! Smart girl! Smarter than I gave her credit for.

Well, lesson learned! From now on I will be stepping it up with our bright little student. Despite the illnesses that have plagued Annie already this season, our next move is to see if Annie is, in fact, already able to read - and why wouldn't she? James started reading when he was just 3 years old, who's to say Annie didn't follow suit? I will keep you all posted to see how she does! And of course I will be writing more about what curriculums we are choosing and how we are able to test Annie on all that she knows and is capable of learning.

The smartest of minds could be hidden in a child without a voice stuck in a wheelchair. If we don't help get that information out we will be missing out on something extraordinary.

It's Been a Week!

2011-10-11T20:52:00.000-07:00

It started Monday, there was no school! The kids were excited to wake up, watch cartoons and then have friends over. James, Grace and Annie had a blast! And I was thankful to have some time to get some stuff done that I was putting off to the side. Monday ended with family game night at which time Annie started throwing a fit. This is typical so we tried to calm her, laid her on the couch and assumed she was just tired. That night Annie slept all night which is NOT typical but when it DOES happen we don't complain and take it as a blessing. Tuesday she woke late (7am) and I didn't get into her room right away, instead I got myself ready as I watched her through the monitor -I heard a funny sound, looked at the monitor and knew instantly that she was throwing up - this is NOT unusual. Oh boy, now we'll be late, I yelled down to James that he would have to make his and Gracie's breakfast, get himself packed and get shoes and socks on while I gave Annie a bath (Let me just take a second and thank God for my wonderful, independent, easy going, responsible Jamesy!).

So, Annie gets a bath, we gather everyone into the car and are off to school by 7:45. I thought it was a little odd that Annie wasn't screaming, squaking or vocalizing super loudly as she usually does but again, I was counting the calm, quiet drive as a blessing. That is, until, Annie threw up again. Ugg, alright, I thought, hopefully my dad can take Grace to school, I'll drop her off after I drop James off.

With James and Grace succesfully dropped off I took Annie home, on the way she threw up again. We got home and first thing I did was put her back into the tub and got her dressed into some comfy Pj's - she'll be spending some time watching movies for sure. After the bath I got Annie all settled into her comfy spot on the couch with her heated blanket - instantly she was asleep. "Great" I thought "I'll wash Annie's sheets and get a workout in and then I'll be able to spend the day snuggling with my little girl". At that moment Annie started throwing up again (glad I put down those towels). I ran to her, got her limp body into a position so she wouldn't aspirate as she was throwing up and realized, wow, she's REALLY sick. I threw the laundry in, got Annie some new towels and grabbed the ringing phone - it was my dad, apparently Grace didn't have school today - hmmmm, time to shine up that "Mother of the Year award".
So my dad drops off sweet Gracie and as I'm in the driveway getting her into the house a car pulls up - "Oh Crap! Totally forgot that Annie's social worker was supposed to come by for her monthly visit". So, I give her the run down and she's fine with coming in the house and braving the airborne germs that may be lingering. As we are chatting I hear Annie crying, loudly - I run to her side and realize she's crying with her eyes closed - that's weird but really, not that weird - Annie DOES have Rett Syndrome and what would be unthinkable for my typical kiddos is sometimes status quo for Annie. We go on with our meeting, Annie goes on crying, I ask our social worker (who is a seasoned mommy of 5 with 1 Down Syndrome sweetie) if she thinks this is something that I should be more concerned about, she turns it back on me, feeling confident in my mothers instinct (apparently she didn't see that the mothers award is in the shop being polished).
Immediatly after our social worker leaves Annie throws up again but this time she doesn't even wake up. OK, now THIS is really weird. I clean her up only to realize that now she has diarrhea and is still not waking. I do the thing I always do when I'm freaked out, I call for the second opinion - AKA - Daddy! Scott says that I should trust my instincts but keep him posted (honestly, doesn't he realize that a call to him means HE needs to make the decision - YES, I realize he has no idea what's going on because he is not here!). So, I clean Annie up once again, realize Gracie needs to eat lunch (thankfully Gracie follows suit with her big brother and thinks its "fun" to make her own meal) so she prepares her lunch while I throw in another load of laundry and run back up the stairs to pick Annie up who is now completely lifeless and dry heaving without waking, and then, it happens - her eyes POP open and dart to the left, but I can't seem to get her to respond to me, I call her name, shake her, move her face "oh God, this is a seizure". I wonder if I'm over reacting so of course, I call Scott - he tells me, "hang up and call 911". I hang up, Annie is now limp and falling asleep, she is breathing and seems to be a bit better but not out of the woods. Ok, I thought, peds are out to lunch so maybe I should take her to the ER. I call Scott AGAIN and he says he's already in route on the way home. When he gets home he takes one look at the little pile of Annie on the couch and says she needs to go to the peds -Yep, I know, however they are closed for lunch right now or else I would have taken her there instead of suggesing the ER. So, we wait until lunch is over, call and get into the peds - Annie is now so limp and lifeless, she continues to throw up without waking. We get her into the car and decide she can't even sit in her wheel chair, she's so limp Scott needs to carry her. Annie's doc comes in and all of a sudden she does the wake up, look to the left but not respond "seizure" thing again. Our ped says - lets run a pulse OX but I'm afraid you will need to head to Beaumont ER. We of course do, all the while Annie is still asleep and dry heaving. We drop Grace off with my mom and head to the ER.
As we walk into the Beaumnot ER I assume we are there for some IV fluids and just a watch but things quickly turn when I look at our slip and we by pass triage and are written as "Urgent". I assume this is because of her "chair", people always get bent out of shape when they see a special needs kiddo. There aren't any beds so we are in the hall for a very short time, the nurses get our history and we are quickly put into the next available "room". We tell the docs the story and realize, it's now 4pm and Annie is STILL not awake or arrousable, it's obvious the doctors are VERY concerned, they come in to take more info and Annie does it again, she opens her eyes, looks to the left and is unresponsive except now she is twitching..... hard - we tell the docs, "this is what's bothering us" but they are steps ahead of us and have an enteroge in the room in split seconds, giving meds and preping for a spinal tap, they fear Annie has meingitis. They tell us that was a definate seizure and with the quick onset of symptoms and the inability to awake Annie they are deeply concerned, they have already checked her for the basics and are now concerned that she has meningitis, encephalitis or worse. They ask if we would consent to a spinal tap. Scott and I are shocked (we are well aware that most kiddos with Rett Syndrome have seizures so when they happened we thought "well, she DOES have rett"), we ask about pain but we're told that since Annie is unresponsive they don't want to give her further meds to sedate her, we agree to the spinal and to our shock Annie barely flinches, she opens her eyes for seconds but otherwise doesn't really respond. Then we're moved to the PICU.
We are reequainted with the PICU and introduced to a fantastic nurse. We settle in for the night realizing that we aren't going anywhere anytime soon. Annie is now on an IV for rehydration and antibiotics. Annie sleeps all night long which is NOT like her at all. The next day she crabs a bit and opens her eyes but just briefly, we and the hospital staff, continue to be very concerned with her behavior. Tests start coming back and of course there are no answers, everything comes back negative and there is seemingly no cause to Annie's sickness.

sweet Annie opens her eyes.

A quick 40 minute EEG was performed to make sure that Annie wasn't having any more seizures. As time ticked on Annie got better and better, she became more and more alert and by evening this is what we saw:

We stayed put for one more night and by Thursday morning it was clear that Annie was completely better.
We got out of the room and headed to the Children's play area in the hospital.

can you tell that Beaumont has a FANTASTIC playroom?

Our nurse actually came into the play area to let us know that the EEG came back clear and we would be able to leave! Hooray! No actual cause was found for Annie's sickness, the thought is that she had some sort of GI virus that hit her fragile body so hard that it caused her to have seizures. We were sent home with emergency seizure medication and were told that 1 of 3 things would happen - 1. this is the start of seizures for Annie, the vast majority of girls with rett syndrome experience seizures on a regular basis so it's likely this may be the case for Annie. 2. She will be more suseptible to seizures when she is sick. or 3. this was a one time, harsh reaction to terrible virus that came on quickly. We are choosing to believe #3

A HUGE thank you to every single person at Beaumont Royal Oak. They took such great care of our sweet little Annie and Scott and I as well. It's a blessing to know that if, God forbid, we ever need to return to the hospital we will do so with piece of mind that we are in the very best of hands.

This experience has once again reminded me that as much as I want this beautiful little angel, Annie has never and will never be mine. She belongs to Him. I am just the person who has the privledge of loving her and caring for her but I have no control over what happens to her. God has a perfect plan for her life and she is safely wrapped in His hands. He will work ALL things for good. I will continue to fight for her, send her to the very best of doctors, and take the best care of her that I know how but I am also learning how to put my trust in Him. "For I know the plans I have for you", declares the Lord, "plans to prosper you and and not to harm you, plans to give you hope and a future". Jeremiah 29:11

Quest for a Cure is here again!

2011-09-16T18:56:00.000-07:00

Hi Friends! I'd like to extend an invitation to all of you to our second annual Quest for a Cure 1K walk and family fun day at Inglenook Park in Southfield! The day will consist of a short walk and then lots of fun for the kids with face painting, balloon animals, pumpkin painting and TONS of food, then some great raffles and prizes for the adults. There is NO FEE for coming out for the day, bring all the kids and show your support with a donation of any size.

As most of you know, Annie was diagnosed with Rett Syndrome at just 16 months old. We watched in agony as it took away her ability to stand, crawl, walk, speak and feed herself. It was devastating. Our beautiful, smart little girl became trapped inside her body.

However, there is now HOPE! Researchers have proven that Rett is REVERSABLE! It is poised to be the FIRST childhood neurological disease to be CURED!

You can help make this a reality! Join us for a 1K walk and family fun day as we raise money for research that will one day cure Annie and hundreds of thousands of girls and women worldwide who are suffering daily with Rett Syndrome.

We hope we can count on you to help us in our fight to rescue our daughter from this horrible disease.

If you are unable to attend but would like to support our efforts, donations can be made in Annie's honor online: www.questforacure.net

Thank you, thank you for your continued support of our Annie and our family. Stay tuned to this blog for excited research updates which are sure to be forthcoming and of course updates on our champion, Annie! Your love, support and generosity mean more to us than we could ever express!

Careful what you wish for

2011-08-25T21:45:00.000-07:00

Every year for the past 3 years we have gone to Kalahari Water Park. It started out as Scott having a very rare day off three years ago and us finding a way of avoiding a day of "fixing up the house". My friend had facebooked about having an awesome time at a waterpark - I emailed her that morning to find out where she went and we had reservations and were on our way to the indoor/outdoor waterpark resort just a couple hours later. Needless to say we LOVED it! More importantly, the kids Loved it, and even more importantly, so did Annie! Woooo Hooo! Score! This was fun for the whole family! So the next year we booked without hesitation and asked lots of family to come join us! Thankfully, they DID! Even MORE fun! This year, with the economy and some extra expenses not budgeted for, we didn't think we would be able to swing our 1 night away with the family. In the end, we did, and let me say that we are so very happy that we were able to do that. Our kids had a blast! And Annie, true to form, did too - once she was acclimated of course.

We got there at about 2pm on a rainy Saturday. Annie, having had a very pleasant drive with us, decided that she was NOT happy to be in this place. So, as Scott and the kids got all the bags from the car and got dressed into their bathing suits I sat with Annie trying to settle her down praying that God would help Annie calm down and that she would have a happy time while we were on vacation. When Annie is happy, the family is happy! So, as Annie settled into a nap I sort of day dreamed away at an easier life. I saw sweet Annie having a blast running through the waterpark with her little sister, free from the debilitation of Rett Syndrome - screaming "watch me mommy, watch me!'. I saw my Annie running up the stairs with her brother on their way up to the waterslides to ride on together and then scarfing down pizza (feeding herself!) and asking for snacks and juice boxes. What a blessing those day dreams were, although they left me quite sad when I woke, wanting so badly for my Annie to get her independence back.

The next day and a half left us with a sweet, happy, content Annie! A blessing and an answer to prayer for sure! But then again, this was the first year that we heard from James, longing for his sister (just 15 months younger and now 42 inches tall) to come on the rides with him. He asked over and over and over again. "Annie's 42 inches, can she come on this ride with me?" "Annie's tall enough now, why can't she ride this with me?" "I can help Annie get on this floaty why can't she come on with me?". Oh God how I wished I could take my prayers back. I didn't want my content Annie anymore, surely if she was screaming and unhappy James wouldn't have longed to be with her. But no, I prayed for content and content was what I was given. Lord help us in what we pray for. What a lesson. The night rolled on and we had some amazing times as a family, swimming, playing, having fun.

Kalahari has this amazing restaurant that just honors kids and their need to be the center of attention. They have a nice big stage and a DJ that runs lots of fun games with prizes and when the games aren't going on the kids get to DANCE on the stage! Um, can we say "Gracie's favorite place?"! This year we got to the restaurant late so we had to sit a little far back and Grace was less than thrilled heading up to the stage "solo" so far from her family at the table. I decided I would be her tiny cheering section and walked up to the stage with her, squating between 2 tables while she danced to her hearts content. To my dismay Gracie walked onto the stage very shyly, didn't dance and walked back down to whisper in my ear "do you think Annie could come up and dance with me?"

James and Grace are being hit with the giant water bucket!

James doing a little rock climbing.

Scott and Grace! I love that they are complementary opposites!

Scotty zip lining

Gracie riding Ollie, the camel

sweet little Lulu, napping

James and Gracie brining us lunch!

Jamesy zip lining

James with the Rhino!

Sott and Annie

James and Grace dancing at our dinner table.

It's as though my sweet day dreams while Annie was resting calmly in my arms had turned into nightmares All that I had asked for "Annie to be content and happy" had opened the flood gates of "what could have been". Don't get me wrong, we had a fabulous time, but I couldn't shake the fact that Annie is getting older and the older she gets the more her sister and brother need her and the less I can take the place of James's "fearless younger sister" or Gracie's "partner in crime". God how I hate having to let go and allow my kids to experience the pain of Rett Syndrome. I have to feel it, but I can deal. Annie has to live it but I can remain stead fast in fighting for her. James and Grace, God help me, how do I help them walk this walk? Lord, give these kids a heart to keep loving and believing in their sister. No matter how long it takes for a cure to be found.

Whats keeping me up at night these days....

2011-08-09T20:28:00.000-07:00

Any special parent knows that there is a huge, enormous, never ending list of things that we have to worry about with our very special little ones. And I'm not talking the everyday, every parent kind of worry like "Will my son go to college?" "Will my daughter stay away from drugs?" "Will my kids stay safe while they are out with friends?". We have worries that are much more immediate like "Is my daughter being educated in school"? "Will my child ever walk?", and "Dear God will she still be breathing when I wake up in the morning?!". Many of our kiddos have difficulty sleeping at night, I don't think this is by accident, I believe God did that for the sole purpose of making us parents exhausted enough to shut our brains off and get some sleep at night - if only for a couple of short hours. Of course there are the rare occasions that our kiddos sleep consistently and with that new found rest our brains are recharged and able to worry again - enough to wake us up out of our precious sleep.

That is exactly what is happening now and the worry that is keeping me up is Annie's bones. The typical parent might not understand but the special one knows, when a child does not walk or run or jump or play their bones feel it. We all need weight bearing exercise to keep our bones healthy and that exercise is incredibly difficult with a child who is non-ambulatory. Of course there are standers and walkers and therapy but there is no way you could even come close to the time a typical child is up and moving no matter how dedicated the parent.

Another piece to the bone puzzle is diet. Annie should be getting about 1,000 mg. of Calcium per day, it should be pretty easy right? Well, not so much. Annie's tolerance to dairy is "iffy" at best. At one point in time Annie was able to tolerate raw (non-pasteurized) milk which was awesome because in my opinion that is the best way to get calcium - it's surrounded by many other nutrients and is very easily absorbed. But then she stopped tolerating it. Of course there are other, less ideal options for "milk" - almond milk, soy milk, rice milk but, I don't agree with anything soy and Annie aspirates on thin liquids. What about through the tube? Yep, we do give Annie Hemp milk through her g-tube, but she isn't able to tolerate much bolusing through the tube, its tough on her delicate GI system. Yogurt has always been intolerable for Annie, feed it to her and she just gags it back up. Ok then, cheese - yes, she'll eat it, tolerate it, but it's a very special meal if you can get more than about 1/4 of an ounce into her. I could go on and on about diet and the calcium rich foods - spinach - gives painful gas, almonds - great but she can only crunch, bolus and swallow a few of them - we have tried it all and come up short every time. Believe me, as a dietitian it KILLS me not to be able to keep this child thriving with just food!

Annie has been on bone supplements since she was about 18 months old. Thinking back Annie's bones and heart have always been a source of extreme anxiety for me - I have no control over her heart but darn it I was going to make sure her bones stayed strong. This has proved to be a most difficult task. Our bone suppelement is wonderful, it includes all of the essential ingredients to build bones - magnesium, boron, calcium, vit. D and K, yada yada. Of course there is a balancing act to using supplements (especially with children) too little calcium in your diet can lead to bones breaking down to keep serum calcium levels normal but too much calcium can cause all sorts of issues including death. We make sure to keep the balance at optimal levels, I tend to obsess over the numbers, calculating her night formula, her bone supplement, the hemp milk and whatever calcium rich foods I can I sneak into her during the day. Another consideration is the type of calcium that is in the supplement is it calcium carbonate, citrate, gluconate, phosphate? Calcium carbonate can interfere with the pH balance of your stomach (think tums). And of course we have made sure that our supplement is from a reputable company since all supplements are not followed by the FDA.

Even with all of this careful calculating and supplementing we are still faced with osteopenia. Annie has recently had a bone scan and we have found that her bones are thin in areas. The news was quite a slam although not shocking. We have been doing everything humanly possible, what's going on? Oh, Rett Syndrome is. I found this pubmed article that pretty much tells it like it is - girls with Rett Sydrome have low bone mineral content and what's more is that girls with R168X and T158M are at even higher risk for this. Well, whadaya know, Annie's mutation is R168X. You would think after reading this I would have thrown in the towel, it's Rett Syndrome, nothing we can do. Oh no, you see when someone tells you something negative about your special kiddo "she'll never walk" "she'll never talk" "her bones will get worse and fractures will start" it only makes you work, think and challenge all the more. You special parents know what I mean. It's just a matter of thinking outside of the box to find something else that may help this bone situation - I'll keep you all posted if I come up with anything and Please, if you have any suggestions leave me a comment!

PS. I concentrated on calcium for simplicity's sake in this post but the truth is that there are many vitamins and minerals that contribute to bone growth, calcium alone will not do it.

Split Personality

2011-08-01T19:48:00.000-07:00

Not many people realize this but I have a split personality. At times I am a wife and mother of 3, other times I am a 6 1/2 year old little girl. Living a double life is difficult, exhausting and often times just plain overwhelming. The constant back and forth of each can be confusing to keep up with but it's a life I have been given and must keep up with, my daughter needs me.

There are many people out there like me. They are easy to spot, they are the moms with a child in a wheelchair at the park that picks them up, struggles to carry them up the ladder and then slides down the slide - because they deserve to play. It's the mom who is in the grocery store showing their non-verbal child 2 cereal boxes so they can make their own choice for breakfast - because everyone deserves to have a choice. It's the mom who wasn't able to drop her child off at a birthday party, she had to stay, but smiles as she feeds her daughter cake and helps her daughter to carry a gift to the birthday girl - because she deserves to be included. The mom who takes her daughter to church and pulls her out of her chair so she can help her dance, then grabs both of her hands so she can clap - because she deserves the right to praise. It's the mom who invites other children over because her child can't pick up a phone, or dial, or speak - because everyone deserves a friend. It's the mom who is in the movie theater reaching over to feed her child popcorn because no movie is complete without popcorn along with it. It's the mom who pulls her child up to her feet at a school assembly because all the other kids are standing. The mom who translates slurred talk or special looks to others because their child deserves to be heard. The mom who is helping her child walk, or run, or jump or even sit because she deserves to experience what all the other kids are. She's the mom that is happily explaining to a group of children why her child wears arm braces or travels in a wheelchair, or has a pacifier or can't speak because her child deserves to be understood and accepted - (even though she really feels like grabbing her child and running, crying and hiding until all of the questions go away.)

Us, "split personalities", aren't on Jerry Springer because we don't lead exciting or flamboyant lives. we just spend our days putting ourselves in our childrens shoes and trying to think, act and do what our kids aren't able to. We are the ones that are watching other kids to see what they play with, how they talk, dress, and wear their hair, so we can catch a glimpse of what our own child might like, do, say and look like if they were able to voice their opinions. It's not easy to lead a double life. You must keep a smile on your face at all times because there's no telling when you have to change into a 61/2 year old again (and we all know 6 1/2 year olds are always smiling).

Most of the time our evenings leave us exhausted, we change back into a parent and have to administer meds, hook up vents and tube feedings, snuggle, bath, dress, read stories and tuck in. Then we wait, at this point we aren't sure what we are, caught between the 2 personalities. At times we can be the mother that checks in on our kiddos, prays over them and heads to work or to sleep. Other times we need to turn into a 6 1/2 year old girl and play, watch TV, or read until our child can settle to sleep. When morning comes we wake knowing that we need to fulfill the lives of 2 different people again and that we only have 24 hours to accomplish that.

This post is dedicated to all of my split personality friends, our lives are difficult but are much easier when we lean on eachother. Keep fighting the good fight my friends, your daughter loves and thanks you for it!

Ps. if you'd like to meet some of my split personality friends just check out the "we don't walk alone" list on the right!
Pps. I know there are many special families out there that have a male child with special needs, I also know that there are many, many special daddy's out there that lead double lives as well. I didn't mean to exclude you, I just write about my own experiences. Kudos and blessings to all of you too!!!

Pool Party!

2011-07-29T22:10:00.000-07:00

This summer its been HOT! Like REALLY HOT! Like 100 degree temps hot! Infact the average temp for July was over 90 degrees - the AVERAGE temp. And we are talking humidity through the roof - this isn't a nice dry heat like Arizona, its a sweating, can't stay hydrated, hard to think kind of heat. Ok, you get it. Anyways, the most refreshing way to combat this heat is to jump into a pool. Thankfully, my sister and brother in law have recently moved into a house with an in-ground swimming pool! These two are amazing, they allow us to use the pool whenever we would like, day or night, weather they are home or not. If they are home and they know Annie is coming over they make sure to crank the heat so she is comfortable. And if we stay too late into the evening, they set up the Bar-B-Que and feed us.... all of us...... all 5 of us! On weekends they have hosted several Hawaiian themed parties that all of the kids (and the adults) just have a blast at! These guys are just so thoughtful and make it so easy for me to get all the kids out, cooled off and having fun with the convenience of allowing Annie to chill out inside and watch a movie if she's having a difficult day - any special needs mom knows how comforting that is! A huge thank you to Uncle Jeremy and Aunt Jen for hosting such a great summer!!

The Luau's!

This is the cutest boy ever! My God son Matthew!

Crafts

Cousin love!

Silly kids

no party is complete without a bunch of flamingos!

Happy Annie

Underwater

The girls, poolside!

My fish

Summer time means pedis for the girls! :)

Purpose? Purpose.

2011-07-28T17:40:00.000-07:00

A few months ago at church we talked about and shared our 2 Word stories. There were buttons and t-shirts and billboards that went up everywhere as a part of the movement called EACH - Everyone A Chance to Hear. Our 2 word stories were meant to be shared in the hopes to inspire others to take the first step towards Jesus. I had a lot of people ask me what my 2 word story was but hadn't been able to share because I couldn't think of how to narrow it down to just 2 words. I've done a lot of thinking over the past couple of months and trying to determine the me before Jesus and the me now. I'm different now but I couldn't really put my finger on exactly WHAT is different. Until I thought back on my life:

Growing up I was pretty plain. I grew up in a middle class family, nothing too exciting, went to school same as everyone else, played some sports and had some hobbies, I didn't have any real shinning talents but I was OK at things I did. I didn't have a real group of friends that I hung out with, I had lots of friends in different circles but never really fit into one of those circles. I went to college and had no idea what I wanted to do. People told me to think of something that I was interested in - I always thought that exercising and nutrition were important but there was not a passion there - still that's what I majored in. I always sort of felt that I was just going through life, not making a difference, not really putting my mark anywhere, just being.
I met my future husband when I was 15. I think I knew the day that I met him that I wanted to spend the rest of my life with him. I loved him more than anyone else in the world. And he LOVED me! He loved me so much, I could feel it and his love gave me an identity. That identity could only take me so far though. We got married and life was good, but something was missing. It wasn't long before we got pregnant! YAY! Oh was I elated when I first saw my sweet Jamesy and I couldn't have been more thrilled to stop working and care for him every single day. I loved every minute of it but something was STILL missing. I decided to start my own business, I gave lectures and did consulting on the side - freelance nutrition. That didn't do it either. Baby Annie came and I was beyond thrilled - to think a boy and girl just a little over a year apart from eachother - best friends! What a wonderful life, you would have thought I was fullfilled, no, really, just busy, something was still missing. Then the floor came out from underneath me, I was pregnant again and something was wrong with my daughter. Wait, I'm searching for meaning and now I've been given all THIS to deal with? How am I ever going to find my meaning, my purpose on this earth when I'm dealing with all this!? Oh, wait, this is it. In dealing with this new pregnancy and a brand new genetic and highly debilitating disease I was shattered. I ran to church, I ran to God. It was then that I finally came to know, offer up my life and begin a relationship with Jesus. That relationship finally gave me a purpose. I came to realize that I had been hand picked to live this life. Hand picked to be this mans wife, hand picked to be the mother of these 3 precious beings and hand picked to walk the life of a special needs mommy. WOW, completely humbled that God would consider me worthy to carry all of that. It takes a Savior to give your life purpose and meaning. It took me 29 years but I have finally found my purpose in life and for that I am eternally grateful.

Oh, and that floor that came out from underneath me, it has been replaced by a pair of very strong hands.

I Need a Vacation from Summer Vacation!

2011-07-25T16:20:00.000-07:00

I am so overdue for a post. There is so much to share and I'm not sure where to begin. The summer time has been such an amazing time to spend with my kiddos. We are so very busy over the fall and winter and most of spring that to have some down time is very, very welcome. I have been embracing the lack of a schedule and just going with the late morning cartoons, PJ days and general lack of a schedule. I have to say that it's been such an escape that even the few appointments we've had I've either forgotten about or messed up the dates or times, I think just because I'm so into vacation mode that I've refused to use a calendar :) That is until this week crept up - YIKES! is an understatement.

James was at Springhill camps this week - what an amazing camp! We have just LOVED every single second of it, so thankful that James' friend introduced us to it. James has gone on water slides, climbed crazy high rope ladders, zip lines and done tons of other fun things in addition to learning about Jesus, praying, and sharing his faith. Of course I don't have any of the good pics because I wasn't there but I do have a video of the closing day - this is a song that all the kids in James' group came up and sang - honestly, it was hard to keep from jumping up and dancing in the aisles - their enthusiasm is contagious!

Annie, of course has been doing her 3 week intensive therapy program (5 days a week, 3 hours a day - whew makes me tired just thinking of it). This week was her second week. I have to say that it's been much harder on her than 2 years ago when she previously went through this program. Annie works so hard and we are now getting the same input from all of her therapists "she's so CLOSE to walking, we aren't sure why she's not taking steps on her own" - we aren't sure either but are eager to see Annie start. At this point we are pulling out all the stops, trying everything that can be tried and keeping an open mind about most things, which has included ordering a SWASH, pulling out the (dreaded) thera-tog suit again and trying e-stim (electric stimulation) therapy. Here is Annie in action at therapy this week:

Tired out!

Gracie - oh my sweet little Grace. Gracie has continued with her gymnastics this year but at this point being only 4, her classes are only once a week. That means that she has been spending lots of time at Annie's therapy, running various errands and going to appointments with mom. This crazy week has been toughest on Gracie so on Thursday I decided to treat her to a mani/pedi (which also meant that mommy got pampered - a nice perk!). Gracie loved it! It's funny how our home dynamics are, James is the oldest and Gracie is the baby, yet Gracie has to play the big sister role to Annie. This puts my sweet Grace in a unique situation - is she the caregiver because of her sisters condition or the care receiver because of her birthing order? I tend to overannalyze things so I'm tying to keep it in the back of my mind and be very sensitive to her needs and wants but not make myself crazy over the whole issue. I want for Grace what I want for all my kids, for them to feel not only needed and wanted but also that she is a very important girl, that she is loved by God and that she is a treasure no matter what is going on around her. Of course there's a balance to it, I think at age 4 she's already a little too "at home" when she's in the salon :)

So combine all this fun with a crazy rare rash, substantial GI issues, a few trips to the peds, lots and lots and lots of medical phone calls, an eye doc apt. and a wonderful, supportive, helping husband who was stuck working late every night this week all in 100 degree temperatures and you've got yourself one crazy week! I promise to post a lot more about the fun things we've been up to this summer, that will be a much longer post :)

We have made the decision to home school!

2011-07-04T06:33:00.000-07:00

It is with a very peaceful heart that we have decided to start homeschooling Annie. We have been thinking of it for a few years now and have decided that this is the time. Thankfully we have also found great respite care and a wonderful tutor that loves and believes in Annie. We have no doubt that this is the right decision for Annie and our family. I can't wait to see how much she learns this year, we are so excited to unlock her potential! As for school, well, its no secret that the educational system here is having financial issues, unfortunately that means less staff, more students and less funding - special education seems to be the hardest hit. We feel blessed to be able to have home schooling as an option. The following is Annie's "educational story". It's been a rough road but its paved with lessons learned and we are wiser for it.

A moment in our shoes: A letter to our special education team

If you could imagine for a moment, you have a little girl, watch her grow and thrive then one day she slips away from you. She loses her ability to ambulate, to speak, to use her hands and slowly develops an extensive list of severe health problems. Despite all that’s been lost you look at your daughter and know that she is still the same little girl inside, but now, she’s trapped. Your life becomes filled with doctors and testing and medicines and somewhere in all of this you remember school.

Educators and therapists come in and see the little girl that IS, not the little girl that WAS. You try to explain what she did, what she knew but it’s hard to put into words and it’s hard to remember and it’s very painful and fresh. You lean on these people knowing that they are the experts and they will help you. Slowly you realize that they aren’t sure what to do either, you enter a scary place, a place where your daughter is misunderstood.

It’s time to send her to school. You’re told to trust, to let go, but you have a little girl who can’t speak, can’t protest and can’t explain what happened during her day. Your heart tells you no, your brain tells you no, but you let go anyways and leave her in the care of strangers. You trust, you check in, you keep close contact with her teacher and therapists. You spend your days worrying about her, learning about her disease and trying, desperately trying, to get the teachers and therapists to understand your daughter, her diagnosis and her potential. The year comes to an end and you realize that one of your daughter’s most basic human needs has been denied for almost an entire year. You feel anger, hurt, betrayed. You cry for your daughters lost dignity and you wonder how in the world you can ever trust again.

A new year, a new teacher they listen to you and say they understand your concerns. You’re told to trust, to let go, but you have a little girl who can’t speak, can’t protest and can’t explain what happened during her day. Your heart tells you NO, your brain tells you NO, but you let go anyways and leave her in the care of strangers. You check in more often, you keep even closer contact with her teacher and therapists. Her teacher explains how much your daughter is learning, how smart she is, how she is moving forward in her education. The year slips by and you find out that testing was performed on your daughter that you were unaware of. The teacher that told you that your daughter was smart performed this test and concluded that your daughter is too disabled to be educated and should work rather on life skills. Your heart breaks. How could anyone count a child out at the young age of 5? You feel anger, hurt, and betrayed. You cry for your daughter’s hidden intelligence. You are certain you will never trust again.

You have meetings with people in higher places. You stop playing “friend” and start to demand. You are angry and make sure people know it. You start sighting research articles and calling on medical professionals. You are told that the next group of teachers and therapists will understand, that they are equipped to handle this type of diagnosis. You’re told to trust, again and to let go again, but you still have a little girl who can’t speak, can’t protest and can’t explain what happened during her day. Your heart screams NO! Your brain screams NO!, but you let go anyways and leave her in the care of strangers. You don’t trust and you make that quite clear. You make a pest of yourself, you don’t let a day go by without contact with her teacher. You will not let THIS year slip by. You know now that teachers and therapists don’t listen to parents, they listen to professionals. You find a world-renowned specialist and she takes the reigns for you. She becomes the voice for your daughter and it’s a huge weight lifted off your shoulders. You ask for the team to meet with this specialist, she’s so busy and has taken time out to help YOUR amazing daughter. To your dismay only 2 members of the team shows. You hang on the hope that the 2 that are there can catch a glimpse of the potential that both you and this specialist know your daughter has. You give up some of your fight and focus your attention. You are bitter and doubt the team. You are right to do so. One therapist is giving you services but doesn’t have goals. You explain that this is not productive or legal. You get nowhere. Another therapist writes goals that your daughter has already mastered. You site 2 private therapists that prove this but she continues to claim that your daughter doesn’t have the ability to ambulate even a few steps. The team fails you. You aren’t allowed to see your daughter in her class because of “confidentiality” but you do anyways. You find your daughter reading infant books (the same books she could hold, point to and say words from on her own before her sickness trapped her 5 years ago). You find her sitting in a kiddy pool with rubber ducks. When asked if she spends time with her typical peers you’re told she is ONLY able to do so during “specials” because that’s all she’s capable of. During those “specials” your daughter isn’t allowed to speak (her computer doesn’t travel with her), or participate like her typical peers (a year of trips to the library and she has only been able to check out 1 book). You feel anger, hurt, and betrayed. You cry because your daughter has to constantly prove her worth.

You find out about meetings that are happening without your knowing - you shout about it but no one cares. The communication device that you tried so hard to get for your daughter, the same device that outside professionals said your daughter could use and master sits in it’s bag, only a select few people have been trained on it and it’s only allowed to be used on certain occasions because of a liability issue – you shout again, but again, no one cares.

You don’t have the money but you spend it anyways on Wrights Law conferences, meetings with lawyers and advocates. You stop spending your days worrying about your daughter and trying to get the teachers and therapists to understand her. You find any excuse to keep your daughter away from school and sometimes you make up excuses. You hold on to the hope that the people on her team are really GOOD people. That it’s the beaurocracy, the red tape, the lack of funding that is to blame for your daughters educational demise, but does it really matter? You realize that your daughter has not learned a single thing in over 3 years and will never be properly educated in this school system. You start to wonder if you can single handedly do what a whole team of “professionals” could not do. You stop being angry, hurt and feeling betrayed. You start to forgive. You realize that staying in school will cause your daughter to regress and you can’t allow that to happen. You take her out of the school system and pray that God will give you the strength to do all of this alone. You continue to believe that there will soon be a day when everyone will know why you fought so hard. One day they will see the little girl that once was trapped but now is free.

Rett Syndrome and the "bad days"

2011-05-30T10:04:00.000-07:00

On a good day Rett Syndrome robs my sweet daughter of her ability to walk, to talk, to use her hands, to play, to sing, to color, to dance, to run, to swim, to hug or kiss her family, to grab a drink or a snack, to have any sort of independence at all.

And THAT is a GOOD day.

On a bad day (or, as the case is now, a bad 2 weeks) Rett Syndrome steals all of the above but goes a step further and brings on severe anxiety, unexplained pain, exhaustion, weakness that leaves my daughter unable to hold her head up at times, tremmors, long breath holding spells, poor appetite and screaming fits that last for hours on end.

Its pretty amazing what you can get used to. I am so past the physical limitations that Annie has, they get me down once in awhile but not often, I know what a smart, wonderful, happy little girl she is and that's really all that matters. But when the bad days hit it's hard to stay positive. A couple days I can deal with, I love her through and she bounces back, we are even more blessed to see that happy smile after coming through some difficulty, but when the bad days start to out number the good and I can't fix anything, I feel quite sorry for myself and my sweet daughter that has to live this day in and day out. I try hard to hold it all together but there is no break, no time out, no time off, it's constant, it's heart wrenching, it's suffering in it's worst form - in a child. God, bless my Annie and bring some relief quick!

I saw this on a blog that I follow (www.spelloutloud.com) and it lifted me a little today. I'm going to print on card stock, frame it and hang it in Annie's room - It's so true, even through the bad days He know's the plans for Annie.

A video for Annie

2011-05-20T07:40:00.000-07:00

This is a video created by Mr. Daltons West Middle School 8th graders. Words can't express how this video has touched my heart. What a gift these children have given us. Thank you just doesn't seem like enough.

If you are local please consider stopping by the Barnes and Nobels in Rochester on May 26 from 7 - 8:15 - we will be handing out flyers that will allow 10% of your purchases to go directly to girl power 2 cure for rett syndrome research!

Closer to Love

2011-05-18T21:08:00.000-07:00

5 years ago today I got the phone call that changed my life forever. "you're daughter has tested positive for Rett Syndrome". "God NO! Not that one!" months of testing and searching for answers left us with the most devastating neurological disorder that had already stolen much of our 16 month old daughter and the nightmare had only just begun. Our hearts will never be the same. God in His infinite mercy has held us every minute of every day since that phone call, even when we had no business being held. Because of all that is lost I have greater strength, and greater thanks for the blessings that surround me. Annie has pulled me closer to love. One day I will have her back. One day I will hear her voice again. I hold on to that hope and will fight tirelessly until then. I thank God for every day He allows me to care for one of the most perfect angels the world has ever known. I pray for His perfect time. We are 5 years closer to a cure today.

Annie walking through the years

2011-05-06T22:05:00.000-07:00

I've said it before but it definitely needs repeating, Annie is the strongest little lady I have ever known! A typical child may learn to walk by age 1. James learned to walk at 15 months, Gracie it was about 13 1/2 months, and our sweet, persistent Annie has not yet met that goal but is consistently making progress each and every day towards this very difficult feat. Here is a glimpse of her accomplishments:
At 1 Year Annie was standing and holding on all by herself!

At Age 2 Annie was able to "walk" with a toy

and eventually a walker

And we started persuing intensive therapy programs

At age 3 Annie started using the theratog suit

We continued to work relentlessly on Annie's walking:

She had good days

And hard days

At age 4 we were able to fund intensive therapy and started the universal exercise unit and therasuit which helped Annie gain much needed skills and some pretty substantial muscle tone:

We then started the Lokomat - an intensive therapy that helped Annie start to bend her knees and gain stamina:

At age 5 Annie was able to get out of her chair and walk with assistance around a public place (like Chuck E Cheese!)

Annie continued to work on transitions and walking weekly during physical therapy at Beaumont.

We held Annie when she needed to be held,

and pushed her when she needed to be in her chair,

and helped her up when she wanted to be on her feet,

We will continue to cheer her efforts to walking independently but we will NEVER be too far to lend a hand whenever she needs someone to lean on!

2011 Annie is now 6 years old, she is back on the Lokomat and will start another round of intensive therapy using the universal exercise unit in July.

Here is Annie walking today!

Annie walking with one hand

Annie we love you so much and have been blessed to be a part of your road to independence. We pray and believe that you will be walking on your own soon but if that is not what God has planned we will spend the rest of our lives happily guiding you on the path that is chosen for you. We love you beyond measure! Daddy, Mommy, James and Gracie!

but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 4o:31

Lets Catch Up

2011-04-22T22:24:00.000-07:00

I know, I know, it's been a really long time. We've been having some fun, let me catch up!
Gracie dressed up over......

and over........

and over again! ( I think the slippers are a nice touch here)

she drank milkshakes,

and baked,

and baked!

She had her first limo ride (a pink limo to a princess castle for an all girls birthday party!)

and had a date with her daddy (dinner and the movie HOP!)

Annie wore the cutest spring dress (but with boots because it's still so stinkin' cold)

Slept A LOT! Annie is now sleeping about 8 hours a night almost every night! Mom and Dad are THRILLED And have caught up on their own sleep and are wondering now what hobbies they should take up in their spare time :)

She got a CUTE haircut for spring!

Miss Extraordinary (the t-shirt never lies) has gotten back on the Lokomat and has been working her tail off at trying to walk unassisted!

She's working so hard that this past week she fell asleep right as they were bringing her off the treadmill!

Jamesy, oh man, is this kid busy! I'm sorry to say that my little man has been a bit overbooked this year, busy almost every night of the week, (we'll know better for next year :) ) and is so much looking forward to summer! Most of his extracurriculars are coming to an end, here he is at Scouts getting his Tiger Cub badge

James LOVES to read! He finished the Magic School Bus chapter series and is now on to the Narnia series. He is LOVING this and is even able to bring his books into school and read them during readers workshop! I'm so blessed!

Jamesy also got a date night with mommy! Dinner and a movie - RIO!

As a family we have been planting trees, trees, and more trees (20 to be exact) to bring our little slice of suburban land a little bit of privacy.

We've roasted marshmallows on the patio - yes the girls are in winter coats - stupid weather!!!

Gracie and Annie have enjoyed some "sister time" on the swings!

And the kids got Guinea Pigs! One is a girl named "Guiney" and the other is a boy named "Bugsy". Here is James trying to teach Bugsy how to follow arrows. James is determined to make his rodent some sort of spy, Gracie and I can't stop washing our hands and Annie just thinks the whole Guinea Pig situation is hillarious!

We had a few sleep overs in mommy and daddys room.

Went to the park in downtown on a sunny yet very cool day.

And enjoyed our 1 HOT (like 60 Plus!) day on the patio (can you tell I'm bitter about the weather?)

The kids have been playing "cash cab" in the wagon!!! "James pulls Gracie and then "pop quizes" her! Oh man is that fun to listen to.

We are very much looking forward to more warm, sunny days! But honestly couldn't be more blessed with this beautiful life we've been chosen for!

Please check out Annie's First Giving Page on the side of this blog! Despite the looks of it now we do have quite a bit going on in the community and are praying that will transpire into glorious funding and support. We have Garden's of Hope growing all over town and will update the blog with pictures soon. Please join us as we fight for our daughters cure! Click the link in the upper right hand corner to support Rett Research!

I'm Living in a Fantasy World

2011-03-17T20:01:00.001-07:00

We had our intake today to see if we qualify for the Children's Health Waiver. The waiver will (among other things) allow Annie therapy - all kids of therapy - OT, PT, speech, recreational therapy, music therapy, behavioral therapy, you name it, if she needs it she will receive it without a fight, without needing to reapply every 3 months, no getting put on hold (right now we are on hold for PT and have been on OT hold for over 2 months), no being told that she's been in therapy too long and no longer qualifies, nothing, just therapy when she needs it until she's 18. An added bonus, the therapy is done IN HOME!! YEP! no more driving an hour round trip for 50 minutes of therapy! What a blessing!
The problem is that in the state of MI there are only about 500 of these children's waivers and there is a preliminary questionnaire that is taken to determine if you qualify. The severity of your child's illness gets you placed higher on the waiting list. Needless to say that the intake today was not necessarily one of the funnest things ever. I had to write out a 24 hour "day in the life of Annie" to determine just how much time I spend caring for her - yikes! Eye opening! I realized that I need 30 hours and that this is only 1 of my 3 children. I looked at it and honestly wondered how it all gets done.

Now on to the discussion about the laundry list of medical issues that Annie has. It's amazing how many things are wrong in that one little body that we just sort of deal with in a way that is so second nature we don't even realize it's a problem anymore. I mean really, just talking about Annie's medical issues confirms the fact that it's nothing short of a miracle that this child is living, breathing, thriving and progressing, she is truly amazing!

The feeding issues next - is there any special diet? No, she eats by mouth all day and eats anything we're eating. Oh, but wait, she's gluten free, and she can't tolerate milk or yogurt, oh yah, her food has to be chopped, oh and she aspirates on thin liquids so she can't have those, oh yah and nothing of a thick, sticky texture because she can't swallow appropriately and she chokes on things like that and trust me when I tell you the Heimlich maneuver does NOT bring those things up. Oh and did I tell you that she can't feed herself or pick up a cup oh, or tell me when she's hungry or thirsty.

About this time Annie's bus comes to drop her off. I grab her and bring her inside. The social worker meets Annie and notices - oh, you didn't tell me she wears AFO's, oh yah, and arm braces as well. Why? Cause she hand mouths, is that why she has these calouses on her hands? No, that's because she wrings her hands constantly. Oh, and she has a vest that she wears to support her trunk when we work on walking and oh yah I told you she could stand by herself but no, she can't GET to standing on her own. Why do we have a stander? Oh, that's because she can stand by herself but she has no protective reflex's so I have to be within arms reach of her because if she falls she will timber like a tree and break her nose. Oh that noise? That's her grinding her teeth, yes, it happens constantly. That other noise? Oh, that's her swallowing air, it's called aerophagia and causes her severe GI discomfort, no, there is nothing they can do for that either. Why is her face turning red? Oh, that's because she holds her breath, or not really holding her breath but rather her autonomic apraxia actually stops her wind pipe from opening and she can't take a breath. How often does that happen? Only when she's awake. Yes, constantly unless she is sleeping.

Does she have behavioral issues? No, absolutely NOT! Well, she does scream quite a bit when she's tired or bored and she's not able to nap or go to sleep without being held and snuggled to sleep. Of course she's bitten me before. How often? Usually at least a few times a week. Yes, she's broken the skin before, she's got strong jaws.

Oh man, are you serious? Is this what actually happens in our life? Honestly, this is usually how I see it:

We have been dealing with most of these things for over 5 years now, it's scary to think that we are actually doing leaps and bounds better than we were when Annie was younger. I think the brain has a way of going through the motions and erasing whats obviously just too much to take in. Whenever an intake like this comes up it's always a harsh reality check. So glad it's over, now I just hope we qualify!

With God ALL things are possible! Matthew 19:26

Kids should rule the world

2011-03-13T11:50:00.000-07:00

On Sundays Scott and I take turns, one goes to church while the other takes Annie to bible school. It's been a while since I've taken Annie because it seems that on my turns Annie is not feeling well enough to go. Today we were able to make it which was awesome because I almost forgot how amazing these kids are.

Here's the scene, Annie and I roll into bible school, we are 10 minutes late (as usual) and the kids are already sitting and listening to the lesson. I take Annie out of her stroller and walk her over to the carpet, we sit in the back. Almost instantly I see some the girls start to inch and scoot their way closer to Annie. One gets close enough to grab Annie's hand and holds it throughout most of the lesson. The teacher is giving a lesson on how God is invisible but He can still be seen through the things that He has made and the way that we act towards each other. I see that lesson come to life right before my eyes.

Floor time is over, time to sit at the table and color. 2 girls ask to sit next to Annie. I grab 2 crayons and ask Annie "which color do you want to use?" Annie chooses purple with eye gaze. I then put the crayon in her hand, hold it closed and move her hand around the paper so she can "color". A minute later Annie's friend grabs 2 crayons out of the crayon box, holds them up and says "Annie do you want to choose another color?" The little girl looks at me and says "She just choosed blue", then proceeds to put the crayon in Annie's hand, hold it closed and move her hand around the paper so that Annie could "color". The friend on the other side says "I'll write Annie's name on her paper" she writes "Annie" "I love you" with a heart. The girls start talking about reading (typical kids are starting to learn to read in kindergarten, Annie is still learning to communicate so we haven't spent any time on learning to read just yet). I told the girls how cool they were that they could read, one little girl said "Can Annie read?" I said, "well, lets see", we held up 2 parts of the project they were working on - one said "invisible" and the other said "seen" I asked Annie which one said "seen", the little girls watched Annie's eyes and said "oh yah, she can read, she just read 'seen' ".

Time for snack. Annie brings her own gluten free snack and sippy cup. I start to feed Annie a couple pieces of dry cereal. One of Annie's friends gets up, grabs her sippy cup and holds it to Annie's mouth. Annie drinks... a lot. The little girl looks at me and said "she looked thirsty". There's a book on the table that the kids could look at with 3-D glasses. I tried to put the glasses on her but Annie's not having it. I tried 3 or 4 times and there was no way she was going to keep those things on. Her friend grabbed the book and the glasses, she held them both up and said "Annie you don't have to wear the glasses, just look through them".

These kids are amazing. Annie can't talk or play with these kids but they are still friends with her. These kids have not been trained in how to take care of a person with special needs but they see a need and step up to fulfill it without even being asked. They have not spent years in school learning augmentitive communication but they are able to understand and perform eye gaze communication. They are not trained in modifying lesson plans but they find ways to include Annie in all their activities. These children do not need to see multiple trials or look at test scores to determine if someone is smart, they assume competence. Children have empathy, understanding and a belief in every person that I think most of us start to loose as we become "educated" grown ups. Adults need proof, children just believe.

Today I saw amazing things from 2 particular girls but the story is the same whenever Annie is around her peers. Boys and girls her same age, some a little older some a little younger, all with the same amount of compassion and understanding. Of course we get stares and comments but typically the stares and comments are out of curriosity, they just want to know why she can't walk, why she wears those arm thingy's, why she uses a pacifier when she's 6. We answer their questions, they understand and Annie becomes instantly included. One little boy a few years ago was very curious about Annie, he stared A LOT, and then got up the nerve to start asking me questions. After I answered his questions he became such a good friend to Annie, he would help her eye gaze at which stories she wanted to read, he would sit by her and wanted to help her walk. The funny thing was that the reverse happened and Annie became a good friend to HIM. This little boy used to be a sort of "trouble maker" in class, he would get rough with some kids and was very antsy and didn't like to sit still. Once he met Annie his behavior changed in class, he was so involved with helping her that he didn't have time to rough house any of the other kids or cause a commotion. They helped each other "be their best selves" (a quote from one of our children's books about friendship).

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these." Matthew 19:14

The CURE

2011-02-24T03:58:00.000-08:00

When Annie was first diagnosed with Rett Syndrome I was devistated. I was also 5 months pregnant so I wasn't able to "flip out" like I really wanted to, which in a way, was a good thing. I had to pull myself together and keep myself sane for the sake of Gracie. This was 2006, while we had a little hope for treatment, because in 1999 the gene for rett syndrome was found, we were still way off from thinking that Annie would ever be CURED. We thought maybe there would be something at some time to help her but really we were just trying to wrap our heads around that fact that we had a 15 month old who couldn't walk, barely crawl and spoke only a handful of words and we were told that she was going to regress. Regress? We thought, what could possibly be taken away?
Stupid question, the months that followed brought our answer and we realized all the awesome accomplishments a physically delayed 15 month old baby girl had (lesson learned - never take ANYTHING for granted). So we regressed, we got breathing problems, our immune system dropped, our weight dropped, our swallowing and hydration became difficult, and all of our awesome hand function slowly diminished.

Scott and I had watched our middle child regress and go through some major health issues all while bringing a new baby into the world and trying to enjoy every second of this new miracle, not to mention cherishing our oldest, James, 3 years old at the time. We had learned a great deal about Rett Syndrome and the devistation but were intrigued by the research and the fact that there was actually a faulty gene that caused this. We got a lot of comfort in the fact that there was a reason for all of this, a reason that we could see and that was being researched, and if there's a reason for it, if we know what causes this why can't we just fight against it? We were on the internet daily - many times a day checking pub med and researching how the brain works and what is this MECP2 thing and Annie certainly has digestion and nutritional issues, what's with that? Why isn't she sleeping? There were no doctors to turn to, we had been to so many that told us "sorry, we don't know a lot about Rett Syndrome yet". So, we took it upon ourselves to find out. I think it was actually therapeutic, at least for me. I like to know what's in store and I wanted to just solve the problem, I wanted to just fight against the illness. The problem was that there was no treatment and really, researching, it didn't seem like there would really BE any real treatment. The girls that were already affected would be really hard to treat, they were working on trying to help the symptoms. In my heart I realized that there were just too many symptoms and that this was only going to get worse. I held on to God, the only one who could turn this around. but I was torn between believing God could work miracles and the fact that "God doesn't make mistakes".

Enter February 2007.

I got on the internet for probably the 3rd time that day to check if anything came across rettnet, or my news feeds or pub med, anything, I was looking for some sort of glimmer of hope. Scott was at work at a new job, I had a 3 year old, a 2 year old that was in the throws of regression and screaming endlessly, and a 4 month old new born baby. I got on the computer and read: RESEARCH BREAKTHROUGH - Dr. Adrian Bird had succesfully REVERSED the symptoms of Rett Syndrome in a mouse model. It is possible that the girls already affected by rett can be CURED! Oh dear God! I hit my knees and thanked God for answered prayer.

Since that time the research for Rett Syndrome has been moving at "breakneck speed". Much of this is due to the dilligent, tireless work of Monica Coenraads at the RSRT. Rett Syndrome has a known cause - a mutation/deletion in the MECP2 gene, Rett Syndrome has been REVERSED in a mouse model. There is every reason to believe that Rett Syndrome WILL be CURED and not only that but cured within our lifetime, not just our lifetime but, if we can continue to fund research, potentially our girls could be cured within just a few years. Equally exciting is that a cure for some of our symptoms may even be closer - not a help for symptoms, not a way to help some of the motor issues, or a med that "may help some girls try to communicate" but an actual CURE for some of the symptoms of Rett. This is exciting! This is an answer to prayers. This is a miracle. This is straight from God. There really is no other way to explain how fast the research has moved in such little time.

So did God change is mind? I don't think so. Is Jesus still alive? Does He still perform miracles today? Why are we so quick to believe that someone could recover from a stroke or from cancer, why is there hope there but no hope when it comes to childhood diseases, genetic disease and chronic diseases like diabetes? Do we think that God is capable of healing when it has to do with some diseases but not others? Where's the cut off? If it's genetic then His mind is made up but if it's something environmental then He is capable of devine healing? or is it chronic vs. acute? I do not consider myself a well versed Christian, I haven't been studying the bible long but I do know that I have come across LOTS of verses that show Jesus healing, I'm not sure I've come across any scripture where someone was sick, believed in the Lord, asked for healing and had a response from God "you know what, I can't help you with that disease". With God ALL things are possible and that's what I've chosen to believe. I believe He will cure our Annie, I believe that we all play a part in that cure. I believe Annie is here for a reason, she has shown not to take anything for granted and I believe she will show that to everyone she encounters, this is her purpose and her healing will be a testimony that God is still working miracles today. I believe that she could be cured tonight, just a touch from the Lord is all it takes but she also may be cured in a couple years through the research that is being conducted and allowed through the hands of God.

I have always believed strongly of this miracle and thankfully God has given us the research to sort of "back us up" but we encounter so many people who look at us with pitty when we tell them our cure is coming. Some say "that's right, you keep believing that" or just sort of pat us on the shoulder as if to say "it's been 5 years and she just keeps getting worse, if that's what you need to say to make yourself feel better". Recently I ran into a friend, she asked about Annie and I told her of the research and that we were certain to have a treatment within just a year or so, she looked at me and said "I'm glad you're being realistic and talking about a treatment and not thinking she's going to be cured". Ouch. I went home a little disheartened and realized her comment didn't shake my faith in a cure in the slightest, I was actually sorry for her because she didn't know the God that I know, that ALL things are possible to those who believe Mark 9:23 and that faith is the substance of things hoped for the evidence of things not seen Hebrews 11:1 If Annie truly is a testimony that God can still perform miracles today then of course there are going to be those who don't believe, if everyone believed there would be no reason for a testimony.

So we will continue to believe that our Annie is trapped in this body, we will continue to love her and treat her as the perfect 6 year old that she is. We will continue to pray and believe for the cure. We will continue to try to convince others of her understanding, intelligence and beautiful personality. But it will be so much more exciting when she can actually speak of these things all by herself.

To find out the latest on Rett Syndrome Research Click Here:

To be part of this miracle please donate Here

Thank you to all who are praying for Annie, for Rett Syndrome and believing for our Cure!

What we've been up to

2011-02-17T19:34:00.000-08:00

Oh how this child amazes me and makes me smile. Annie's been feeling so great lately. I am drinking in ever single second of it, I know that it is fleeting and that the time will come that her pain will come back and honestly, I'm thanking God for that because it's knowing the pain that keeps me from taking her happiness for granted. Soo, this is what our amazing lady has been up to:

Just looking cute

Annie has been doing awesome on her computer lately. Our rep came by the other day and set her up so she can control the TV, we added music and she can control the MP3 player (we played "freeze dance" the other day, Gracie and I danced when Annie turned on the music and then would freeze when she paused it!), We have hooked her up to wireless internet so she can use her eye gaze as the mouse (haven't tried this, seems a bit challenging but I know Annie will get there) and of course we haven't forgotten education - we set up a page where Annie can start to learn her Dolche Primer sight words through the Unity symbols - I know, take a second to actually think about that - Crazy huh?? Here's a video of Annie turning on the TV with her computer - she's too cute, so proud of herself!

Our wonderful friends lent us their stander. We have never really been interested in getting one because I feel like if Annie can stand independently we shouldn't take that away but when our friends offered us this one we thought that it would be good for extra time on her feet. I'm so glad we did because Annie has been LOVING it! The first time I put her in it she was so happy that she didn't have to worry about her stability that she threw her arms around me when I came close and gave me a big hug!!! Hugs are precious, it takes so much for Annie's hands and arms to work simultaneously to give a hug that on the rare chance you receive one you enjoy ever second of it.

Here is a video of the girls and I having a huge dance party in the living room during the Super Bowl half time show. Annie was able to dance all by herself in the stander!

That's about all with Lu-Lu. We are also trying to get her set up with the LOKOMAT therapy program again, I'll keep ya'll posted if we get in again.

Gracie is just as bouncy and bubbly as ever! She is diggin' her gymnastics class!

and has been really loving school and hanging out with her friends! This girl keeps me on my toes, she's my little mini-me, always making sure that everyone is following the rules in the house and helping me with all the housework. She started calling me her "Bestie" a couple weeks ago (which I am just LOVING!) and has recently been starting to call Annie her "Bestie" too! I just can't get over how cute it is. Gracie loves to play with hair (she's such a girl) yesterday I saw her playing with Annie's hair. It makes me so happy to see my girls becoming so close.

James has been keeping busy too. He did the Awana Grand Prix at our church - his car did great but didn't place. (It's the red one) But he'll get another chance when he does the Grand Prix with the Cub Scouts.

James started Cub Scouts this year, he's loving it! There's been so many great outings and he does it all with his DAD! Woo Hoo, they get to spend some time together and I don't have to get involved with any of it - it's a two fer! Here's my handsome guy in his uniform.

James has also started karate again and is having a GREAT time with it again. He's an orange belt right now and is hoping to move up to green soon.

Scott and I haven't been up to much, just trying to keep up with the kiddos and keep things running as smoothly as possible. It's harder than it seems but I couldn't imagine my life any different. I love these little ones they are such blessings!

Dress Up 2 Cure is BACK!

2011-02-15T10:03:00.000-08:00

Join us for our 5th Annual Dress Up 2 Cure Campaign! Over the past 4 years more than 6,000 people have participated in Dress Up 2 Cure to raise money for Rett Research, raising a total of $180,000! Rett Syndrome is reversible! The science is there, the funding is not. Join us in reversing Rett! We are looking for schools to get involved with our dress up 2 cure event! If you think your childs school may be interested in dressing silly contact me for more details. What about businesses? A dress down day? How about planting a Garden of Hope? Got your own ideas? Contact me and we will help you every step of the way. Don't have the time to get involved but want to contribute to funding a cure for Rett? Check out Annie's fundraising page HERE. Thanks for getting us closer to our miracle!

Snow Days!

2011-02-05T06:07:00.000-08:00

We have been enjoying our snow here!

Gracie snow angel

Gracie and Scott heading down the slopes

Scott helping Annie to the hill

Annie waiting to go down the hill

Poor Gracie, ran into a tree..... twice. :(

Scotty heading down with Annie!

Back up!

James and Danny heading down on the tobaggin
The kids have had the most amazing time playing in the snow this year. Even Annie has gotten out to enjoy the white stuff a bit. Scott is an amazing dad, he stays out for hours with the kids heading down the hills and back up again. I stay mostly in the car or in the house with the hot chocolate and goldfish crackers for when the kiddos get hungry and cold. I'm pretty sure I got the cushier job!

I'll Fly!

2011-02-03T04:52:00.000-08:00

Dana Marie, is a Canadian gospel recording artist, who has written a beautiful song for a little girl, Anna, who is battling Rett Syndrome. This song is written from the perspective of Anna to her mom and dad. It is absolutely beautiful! You can preview the song here and then download it for $.99 here! 50% of the proceeds from the download of this song will be donated to Girl Power 2 Cure! AND Every purchase enters you to win the beautiful "Vintage Pearl" necklace pictured here!

One glorious day my Annie and the thousands of girls suffering from rett syndrome will be free from their broken bodies and they will FLY! Each day we get closer and closer.

The VIEW

2011-01-29T21:58:00.000-08:00

I want to make sure everyone got to see the Rett Syndrome segment on The View!
It was such a surreal and exciting experience seeing our friends, the Gutierrez Family, on stage with the VIEW ladies and knowing that our awesome Girl Power to Cure ladies were there supporting and cheering on our rett family from the audience! Manny and Stefanie did a fantastic job sharing their story about their beautiful daughter Anna and Rett Syndrome. Monica Coenraads of RSRT was also in the audience and gave the world insight into how close we are to curing this dreaded disease! I was also thrilled to hear that not only did the View put a link on their page to the RSRT website (so the viewers had a place to go for more information and to place donations) but the ladies of the View watched the documentary, RETT, as part of their research on the segment, and a copy was given to each audience member at The View taping.

That's some pretty amazing exposure for a disease that strikes 1 in every 10,000! But as Woopie pointed out, and I'm paraphrasing "you say it's 1 in like a trillion but you never know who that 1 will be!" Which is so true, this can happen to ANYONE! Rett strikes at random! You never know who's family it's going to hit next. Support Rett Research! Our girls are waiting to break free.

RETT SYNDROME ON THE VIEW!

2011-01-27T06:10:00.000-08:00

SPECIAL ANNOUNCEMENT
Girl Power 2 Cure girl Anna and her family, along with RSRT Executive Director Monica Coenraads, will appear on The View tomorrow, January 28th.

Tune in at 11 am EST / 10 am CST/PT on ABC to watch!

Anna's dad, Manny Gutierrez, is a cameraman for The View. Thank you to their family and to Monica at RSRT for sharing the Rett story on air!

The Gutierrez Family : click to check out their blog about their taping of the View.

Have a wonderful weekend everyone! Be sure to spread the news!

Moving On...

2011-01-26T09:50:00.000-08:00

Life has been slowly returning to normal from our crazy couple of months. It feels so good to spend more time with James and Gracie and not in constant worry and distress over Annie and what might be upsetting her. The kids are actually able to have friends over again, which is a GREAT thing because when Annie is not in a good place I can't run the kids to and from their friends or allow them to have kids over because I'm too preoccupied with caring for her. Rett Syndrome doesn't just affect my middle child but it affects ALL of them. When things like this have happened in the past I have been able to take time out and let our respite deal with it for a few hours a week so I can make life a little more peaceful for James and Gracie but since the end of summer we have been without respite which has been a huge challenge. Last Friday we finally got a great college student to come in and work with Annie a couple times a week to free me up a little bit more - YES!

Annie's been on and off since my last post. We ended up taking her off the neurontin which we determined was responsible for her lack of sleep which lead to insane screaming fits all day because she couldn't get her little body to settle down. Problem solved right? Well, sort of. It seems to be taking a long time to get Annie back into her typical sleep routine. We've also been seeing a cranky Annie which we aren't used to, she crabs during the day and is doing a lot of breath holding (gave us a good scare on Sunday and got herself out of bible school). Of course cranky whines are much easier to bear than moaning in pain so we'll take it. But, it's more than that, there's just been these weird, little things that don't mean anything at all by themselves but when you add them up they just make a momma a little uneasy. I can't put my finger on it, I just feel like somethings not right. Annie looks great, she's communicating with us again, she's tolerating therapy, she just seems different, and irritated. After going through the list of things it might be and analyzing every little movement, vocalization and look that doesn't seem quite right we've come up with nothing. I've been known to over analyze, I admit it. My husband has had to tell me to "give it a break" and "stop trying to figure everything out" on more than a few occasions. So maybe that's just it, I'm over analyzing. But just to be sure I am keeping a close watch over James and Gracie and asking them to report back any aches, pains or not so good feelings they have in the hopes that maybe it's a virus running through the house and Annie was #1 on the list.

Gracie started feeling not so well today, it started with "I'm so tired!" after sleeping a whopping 13 hours! And then it was "my mouth is itchy" - that's a strange symptom - hmmm wonder if Annie was feeling like that. Then "I'm so cold mom, I can't warm up" - hmmm, Annie's circulation has been terrible lately, I wonder if she felt like that. I ask Gracie if she would like to sit on the couch and watch a movie or if she wants to play wii dance party, she says "watch a movie" YEP, she's sick! DING DING DING!!! I think we have it!! I'm guessing that Annie had this same thing going on but couldn't tell me. Thank GOD for my typical kiddos who can sometimes give me a clue as to what's going on with Annie.

Colds and virus's we can deal with, no sweat! So it looks like the MacDonald family is in for easier days, with respite and the GI pain in check I think it's time to move on past this little hiccup and get on to some fun!

This is Annie at therapy today, much better than what we saw a few weeks ago!

Rett Pain Update

2011-01-15T16:57:00.000-08:00

Thank you, thank you to my loving friends for all of your support, encouragement, prayers but most of all for your understanding. I LOVE you and want you to know that your girls are in my prayers daily as well. We have increased Annie's neurontin and are working hard at getting her night time sleep routine under control - we may be headed for more medication changes to accomplish that. Thankfully we have the most wonderful doctor in the universe that takes impeccable care of our Annie. If we don't see this frown turn upside down soon we know she will know what to do.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". Jeremiah 29:11

Rett Syndrome Pain

2011-01-13T14:08:00.000-08:00

Annie's little body has been responding fairly well to the new med she is on for pain, unfortunatly as is usually the case with rett syndrome when you solve one problem a new one pops up. In this case it's sleep, ahh yes, lack of sleep, here we go again. I swear Rett Syndrome would be so much easier to deal with if Annie never had to eat and never had to sleep, these 2 things just seem to be our arch enemies.

Last night Annie actually did really well, she slept from 9 until 5am with only 1 dose of each of her sleep meds! I woke up with her at 5am and thought "all right! We are over the sleep issues, today is going to be a GOOD day". Why oh why did I have to say that. I got Annie dressed, gave her her meds got her downstairs and put her on the couch while I made breakfasts for the kids, packed their school bags and downed some coffee. I went to grab Annie off the couch and realized that she was kicking and breath holding a lot but chalked it up to being tired (usually when Annie sleeps well at night she's more sleepy during the day - I know, that doesn't make any sense) and thought that once I got her in the car to make the treck to school she would take a nap and all would be fine. I fed Annie, got the other kids up, packed everyone in the car and started traveling the snowy roads the 20 minute drive to Jay's school. Annie never fell asleep and started moaning - uggg, my heart began to sink, moaning is NOT a good sign. After dropping James off I turned around to head back home about halfway through the drive Annie's moan turned into a scream, at this point I realized we were not dealing with a sleep issue here, this scream is a scream of pain.

When we arrived home we had 15 minutes for me to take a shower and get Grace packed for school. I put Annie on the couch and the screaming continued and now heightened with frantic kicking. Grace and I rushed to get ready and I put the girls back in the car - Annie still throwing a fit. I could have kept Grace home from school and tried to console Annie but we've been through this many, many, many times before and my main concern was getting Grace to school so she could be released from the lash of Rett. When we got to Gracie's school Annie was beside herself, I thought to myself "Dear God how am I going to get this girl into her chair so that I can take Gracie into school". I manage to get Annie's chair out of the car and unbuckle her, as I grabbed her waist to get her thrashing, screaming body out of the car I watched Annie's face as she searched for something to bite, thankfully I was wearing my winter jacket, it took most of Annie's wrath - "everything's OK Annie" I lie. Once in her chair I had to hold her flailing body down to put all of the straps on her, I also strapped down her feet because she was kicking so badly that I thought she might hurt herself. I tried to gain my composure as we walked into church 20 minutes late for preschool with a child screaming and thrashing in her wheel chair. There were still some parents there a couple of them looked at Annie, horrified at the sight of her. The preschool director ran up to me and asked what was wrong and offered to help. Trying to hold it together I smiled, thanked her and simply said Annie is having a difficult day today. I kissed Gracie and tried to get Annie and myself out of the church as quickly as possible without it looking like I was trying to get out of there as quickly as possibly - God forbid anyone ever see how close I am to tears. I get Annie and her chair back into the car, constantly trying to offer words of relief to my suffering child, time to drive to therapy. I plead with Annie to tell me what's wrong and to try to calm down. I turn on her favorite video and that doesn't seem to help. I look at the clock, Annies been screaming now for an hour and it doesn't seem like it's going to let up any time soon, we are 20 minutes away from therapy and it starts in 20 minutes I think to myself "if I can just make it 20 more minutes I can hand her off to the therapist and maybe she can calm her down" - a desperate thought for a now very desperate mommy. I try to stay calm and keep my focus on the road as Annie's tantrum intensifies and she starts to cough and gag on her own saliva because she's screaming so intensly. I start to think "Oh God should I just take her straight to the ER, she looks like she's in such extreme pain but she's in pain most days so how do I know if this pain is intense enough to take her in?" "What if she's just so exhausted and rett syndrome is preventing her from naping, could this all possibly be due to sleep?" "did I push her foot into her boot to hard? Could I have broken her ankle?". I finally get to therapy and park. I frantically call Scott, I get the voicemail - CRAP, he's in a meeting. OK, our code for emergency is to call twice right away, so I call again he answers (thank GOD!). I try not to sound like such a lunatic and tell him all that's going on , of course he can hear Annie in the background, his suggestion is to take her to the pediatrician (why didn't I think of that? I drove past the peds office 30 minutes ago, it's so hard to think when she's screaming like this!). I tell him that she's been screaming now for 1 hour and 20 minutes and I don't feel like I'm in a position to continue to drive her around and back to the peds office. I tell him to forget and that I'll think of something - beyond frustrated now that he didn't put on his superhero cape and come rescue us from this hopeless situation.

It's time for therapy and I decide that I'll take Annie in and ask the therapist if she thinks I should take her to the ER (thankfully we have been at this therapy for over 4 years so I feel comfortable enough to ask the therapists their opinion). Again I grab Annie out of the car, and again my jacket gets the bulk of Annie's bite, "I love you Annie" I tell her. I try as casually as possible to wheel this out of control child into therapy, people look at her in horror then look at me as if to say "why aren't you doing anything?". I meet their stares with a calm composure and a smile all the while inside wanting to scream at them "You have NO idea!" I sit in the waiting room and recieve more stares from parents and 2 years later (actually it was 2 minutes but it felt like years) our PT comes out. She kneels down in front of Annie and says "I could hear you all the way in the swing room, what's wrong". I calmly tell Amy that it's been a really tough morning and I'm not sure what's going on. We take her back into the therapy room, I get her out of her chair and jacket and Annie finally starts to calm down. I hold her and rock her while Amy gets some toys. The screaming has calmed back down to a moan and I tell Amy that I think she's in pain but I don't know what to do. Amy agrees that she's in pain and we start to try moving her around to find the source - of course that comes up with nothing (by the way, this is not an all that unusual day so while I'm familiar with this behavior I'm not "used to it" by any means.). We decide to proceed with therapy. Annie's been in therapy for over 4 years, there have been a handful of times that other people have taken her but the vast majority it has been me and I have stayed to watch each and every session. Today I physically couldn't stay. I start to feel my mental exhaustion, I start to feel a lump in my throat, I feel weak and shaky, I tell Amy that I'll just go sit down in the waiting room adding that I have this really great book I want to get back to so she doesn't think that I'm on the verge of completely breaking down. I get into the waiting room and the same parents are there, I see their looks - their ones of pity - my kid is by far the most disabled of any child here and a screaming fit on top of it, oh, poor woman. I want to scream and tell them not to pity me, we're fine, just having a tough day. I sit down to "read" my book but really just open it and go through my thoughts. All I want to do is breakdown, scream, cry, run away but I can't head to the bathroom and cry silently in the stall because what if Amy comes out and Annie needs me. I swallow the huge lump in my throat and play around with my phone (that get's no reception but no one knows that, I just need something to fumble with so no one tries to talk to me). The session is now almost over so I head in to see how Annie's doing, her face is blotchy, she has huge purple bags under her eyes but she flashes me a smile. Amy tells me that she's calmed down and has been productive but is moaning and thinks she may still be uncomfortable. I'm angry, angry that Annie had to go through that pain, angry that I had to hear my daughters suffering for an hour and a half and angry that we're dealing with rett syndrome, I'm spent. I look at Annie and say to her "we need to get Amy's home number so we can call her next time you throw a fit" trying to make a joke so Amy doesn't see that at this point I'm just destroyed. I thank her, get Annie dressed for the outdoors and head to the car, Annie starts to moan. I get her into the car and kiss her blotchy, tear stained cheek "I love you so much, I wish God would let me take your pain", Annie looked me in the eyes, gave me a half smile for a split second then closed her eyes, opened her mouth and started screaming in pain again. I started to cry too but forced myself to stop, we have to pick up Gracie and after the spectical we made of ourselves in drop off I don't want everyone to see that I've been crying in pick up. By the grace of God Annie falls asleep on the way to pick up Gracie.

The rest of the day was on and off screaming fits, there wasn't much relief, not from her videos, not from medicine, not from snuggles. She refused to eat and had breath holding spells throughout the day. There were times of intense painful screaming fits and then the pain seemed to lessen leaving Annie just moaning quietly only to intensify again to a full out scream. Annie would sleep for a few minutes then wake up screaming, she would smile occasionally only to start moaning again. I hate Rett Syndrome. I wish I had a clue as to what was causing the pain, I just want to know so I could attempt something and not feel so helpless.

I have meet so many special needs parents through blogging and have learned so much from all of you. If you have any thoughts I would appreciate them. If anyone out there has a clue as to where the pain is coming from I would love to hear your thoughts. I know that there are some things that we just need to accept with Rett Syndrome and maybe this pain is one of those things, if so I would also love to hear any ideas of how you cope with your child's pain.

Today was a difficult day. Tomorrow will be better.

6 Years already???

2011-01-08T18:42:00.000-08:00

How time flies. Annie turned 6 on January 6. It feels like it was just yesterday that she was this tiny

Look how perfect this baby is.

This is Annie at her 1st Birthday - a January Luau!

This is Annie at her second birthday. Rett was fierce this year, she started battling breathing issues and was a very sick little girl but look at that smile here.

Annie's 3rd Birthday, Look at this happy girl, we had a PJ movie party with all her cousins!

Annie's 4th Birthday, guess what her favorite gift was!

Annie's 5th Birthday was at Chuck E. Cheese's and it was a "friends" birthday! She had so much fun I think she smiled for 3 days straight!

Annie's 6th Birthday

I have heard once that everyone you meet is either better or worse off from having known you (Yikes) Well, in Annie's case there isn't a soul that she has left "worse off". Annie is love and compassion and she spreads that wherever she goes. In stores and at therapy she will smile at everyone she meets, looking them deep into their eyes until they acknowledge her. So many strangers have been moved by her, I can remember one man asking me "where are her wings?". That's Annie, completely blameless, in her 6 years of life she has never uttered a hurtfull word, never argued, never hit, never shown anything but pure love towards others. Sometimes it makes me wonder why I ever hope and dream and pray for a "cure" she's pretty much perfect just as she is, rett and all (of course I would like to relieve some of the suffering). I think this song by Steven Curtis Chapman sums up Annie perfectly - my living, breathing, priceless work of art.

1/1/11

2011-01-04T05:04:00.000-08:00

Start the New Year off right and help us raise $11,111 in January to support Rett Research!

Can you donate $1.11 - less than a cup of coffee, or $11.11 - less than a large pizza, or maybe even $111.11 in support of Rett Syndrome throughout 1/11? Donate in honor of Annie today!!

So far we've raised $1,097 of our $11,111 goal! Proving that EVERY DOLLAR COUNTS! Together we can raise thousands to kick off 2011 in a HUGE way!!!

Click HERE and make Rett Syndrome the FIRST charity you support in 2011! Make Rett Syndrome the FIRST curable neurological disorder! Make a donation today!

Chasing Rett Symptoms

2011-01-03T19:03:00.000-08:00

Prior to my career as a mom I was a registered dietitian. I loved learning about nutrition and the way the body works and responds to proper nutrition and vitamin and mineral supplementation especially when it's stressed from a disease or some sort of trauma. It's actually very fascinating. As far as working though, well, that really wasn't my thing so the momma role fits perfectly. When my kids were born I put the nutrition to work and tried to keep my kids fed as healthy as possible. We also use homeopathic remedies for most of their ailments. When Rett Syndrome came into the picture I was challenged. Never had I worked with a child so sick before. Not to mention the fact that right after diagnosis Annie was an incredibly fragile child, it's only now that I realize just how sick she was then. I researched of course and found out everything I could about rett and how it affects the body and how I could possibly keep Annie's symptoms less severe by supplementing with nutrition (man did I feel like a failure when we had to get a g-tube, fortunately the g-tube ended up being the best move we could have made for Annie's nutrition so it all worked in the end.) We started by changing Annie's diet, we took out gluten and casein and saw a HUGE improvement. We also started digestive enzymes as children with rett syndrome have a very difficult time with digestion. We of course added a multivitamin, vitamin D and extra calcium. From there it's sort of a blur, we have tried L-carnitine, extra folic acid, zinc picolinate, aloe vera juice, and host of other things but if we don't see a change for the better then we stop them, no reason to make the liver work any harder than it has to processing all of that without benefit. In addition to the supplements we have also have Annie on some meds - it goes against all of my "natural" tendencies but homeopathic remedies didn't even touch Annie's issues and if natural doesn't work then we need something to offer her relief.

Soooo, here is what we have settled on. And when I say settle I use the term loosely. Poor Scott learns the "cocktail" just as I'm modifying something. Annie is always changing and growing and her nutrition needs to follow suit.

These are for Annie's basic nutrition: Bone supplement (for thinning bones due to rett), Multivitamin/mineral (rett causes malabsorption) and a probiotic (for proper gut flora, regularity and increased immune system)

These are for extra nutrition: a "milkshake" of Hemp milk (rich in fat, calcium and vit. D), protein powder and flax seed oil

These are meds that are given when they are necessary: suppositories (for severe constipation or impaction - rett causes poor motility and hypotonia of all muscles including the GI system), Mylanta (for breakthrough reflux and gas), and Levsin (for severe GI pain).

These are Annie's everyday meds: Buspar (rett syndrome causes severe anxiety), Zantac (for reflux - I'm not sure you can have a neurological condition without having reflux), and neurontin (for Annie's nerves that are "over-firing" and causing Annie severe pain).

These are for sleep: Melatonin (to help put Annie to sleep, we give it twice a night because rett causes severe sleep disturbances), and benedryl (to help keep Annie asleep). I really feel like Annie should be on stronger meds for sleep and we have tried some but at this point Annie has some pretty severe breathing issues and I would rather be less aggressive here then worry about Annie's breathing at night.

In addition to all the meds and supps Annie also has a whole host of medical supplies because of her g-tube. This is a typical monthly shipment:

2 types of syringes for the month, extension tubing, tube feeding bags, a new mic-key kit so we can change Annie's button (yes, if you can imagine, we have to do that), and of course the formula (we use complete pediatric)

Good thing I have 2 "forklifts" to help me get it all up the stairs and into Annie's closet!

It's funny (well, funny's not really the word for it), I was recently at the hospital with Annie for some testing, she was in a new department so they weren't familiar with her and wanted to know a list of her meds - I didn't bring Annie's medical binder with me so I had to write it all from memory, I told the woman there, oh, she's not on many meds at all. Once it's written out I see how much she's really on and it's alarming to think that this is an almost 6 year old little girl. It's actually a little hard to keep up with all of it but if this is what Annie needs to keep her strong, healthy, calm and in as little pain as possible then we will keep it up. I can't wait for the day that we start peeling all of this away and are left with a child who can thrive all on her own. I DO feel very thankful when I look at this list though because it does NOT include ANY anti-seizure meds. Most girls with rett syndrome suffer from seizures. Many of these seizures are hard to control with meds. Some girls need to be on large amounts of different meds that cause them to sleep during the day in an attempt to control seizure activity. We are so very blessed that Annie was only on seizure meds for a very short time and that she has been without them for years, however we are aware that they may come back at any moment and are thankful for every day that Annie lives seizure free.

Welcome 2011

2010-12-31T15:16:00.000-08:00

I am anxiously awaiting all that 2011 holds for us. As for resolutions I think I'm going about it a little differently this year, I'm going to try goals instead. For me I think they will be easier to obtain - sort of baby steps that I can take throughout the year to better myself rather than having 1 stellar week in early January and then being angry with my self for failing. My goals are going to have a common theme and that is "Thankfullness"!

There is a local radio personality here that has spoken a few times about how his family went through a time when they were in severe poverty. They had a roof over their heads but there were nights when all they had to feed their kids was plain dry toast and water. Throughout this hardship he recalls that he and his wife were determined to not let it take their spirit. They stayed positive and hopeful and above all else they always stayed thankful for the things that they did have. Years later, when the hardship was over, they were in a better place and their kids were grown he asked his children what they remember about that time of poverty. Their answer surprised him. They didn't remember being broke and going without, what they remembered was that they spent every night together as a family, and that their mom made really great toast!

When Rett Syndrome entered our lives 4 1/2 years ago so many dreams were shattered, so many hopes for Annie and our entire family were crushed. Since then we have made new goals and have discovered exactly what matters in life. Rett Syndrome has stolen a lot from us, especially from Annie but even with all that has been lost we have always had so much to be thankful for. I want my kids to realize that as they grow and live not everything will be perfect, things go wrong, hopes and dreams die but new ones take their place. Above all I want them to know that one of the most important things in life is to be thankful. If their hearts are thankful happiness is sure to follow. I pray when my kids are adults and look back on their life growing up that they don't remember rett syndrome and sickness but rather the "toast". Here's to a wonderful New Year, one full of blessings and miracles, signs and wonders and a new chance to discover all that we have to be thankful for.

Christmas 2010 - A Success

2010-12-25T22:19:00.000-08:00

As rough as December was on Annie (and me) I have to say that this was one of the best Christmas's EVER! I'm not sure why, maybe it's because the couple days of leading up to Christmas Annie started feeling better and we saw some easier days or maybe it's because we have been dealing with rett for so long that we are starting to (dare I say the words) get used to it?? Who knows, but at any rate we had a great time!

Annie's GI pain eased up a little bit over the Christmas weekend but she was still off and on at my moms big Christmas Eve party. What's weird is that it didn't really upset me too much. I think it's because I just let go and decided that instead of holding her and trying every trick in the book to make her happy only to fail and get us both frustrated I just passed her on to Scott, who passed her on to my sister, who passed her on to her husband. I got a chance to chat with the rest of the family and I think Annie was much happier being around everyone rather than just staring at my stressed face.

Chirstmas morning Annie was the first one up but quickly fell back to sleep after snuggling with mom and dad. Gracie was next and shockingly James was last. We headed downstairs at which time Annie became irritated. Instead of forcing the issue and making her do hand over hand to open her gifts we just wrapped her in a down comforter and let her relax. When she was ready we had her look inside her gift bags. We used 2 huge gift bags and put all of her gifts in there together so she didn't have to deal with wrapping paper and using her frustrating hands. We had breakfast and then took her down into the play room to see her big gift. We set up a canopy with Christmas lights (she loves lights), a flying angel and big comfy pillow - "Annie's special place". She layed on her pillow to look up at the lights and fell right to sleep - she loved it!

Christmas Day we headed over to my in-law's house. Annie was not overly thrilled but seemed comfortable for the most part. (I LOVE this picture of her beautiful face. I really need to get some solid color arm braces though, sometimes they can be a bit "busy" - red would have been nice against the black dress - oh well, maybe we won't need them at all next year!).

Christmas 2010 was a success. Leading up to it, not so much, but we were blessed to be around lots of family. There are so many things that we have to be thankful for and sometimes I loose sight of that when the stress gets to be too much. I'm not sure if the New Year will bring less stress but I am hoping that I can use this December as a way of learning to cope with it better.

This post was mostly about Annie but we have 2 other kiddos here that thoroughly enjoyed Christmas! Here they are jumping up and down on Christmas morning!

Gracie eating a "Happy Birthday Jesus" cupcake

Grammy got Gracie a puzzle, she loved it so much she put it together and then hugged it! Silly girl!

James didn't even sit down to open his gifts!

An Annie Update

2010-12-19T20:51:00.001-08:00

So it's no surprise to our regular blog readers that Annie is battling GI issues. For those who aren't familiar with our sweet Annie's battle I will give you a little background - without rewriting the whole story! Annie was born perfectly healthy and normal, she was such a quiet and tiny little girl that we literally had to set an alarm to wake up and feed her at night. She wasn't a big eater but would eat when she was hungry and tolerated her feeds well. At 9 months it was as if someone flipped a switch and Annie started screaming louder than we had ever heard before, she started refusing feeds and got to the point we wondered if she would dehydrate because she was taking in such little food (this we now know was rett syndrome taking over her little body). Since this time we have struggled with feeding Annie, keeping her weight up, keeping her digestion and absorption in check, reducing her reflux and battling gut pain. We've tried different diets, been through countless medications and tests. In April of 2008 Annie went in for surgery for her g-tube to help with her weight and to possibly allow for a way to relieve gas pressure from her stomach. This has been a blessing but not a "cure all". Annie continues to struggle with constant gut pain and lately that pain has increased. For the past 2 1/2 weeks Annie has been spending most all of her days moaning in pain. The pain increases when she eats (or when bolused) and she screams in pain for upwards of 2 hours 10 minutes after eating. We typically see this behavior for about 1 week every 4 to 6 weeks - the screaming lasts for about 4 to 8 hours a day every day for a week. There's no reason for it and then it subsides as mysteriously as it came one. We have never been able to figure out the actual source of the pain. The pain went on for over a week and got so bad that it was keeping her from doing her therapies and even tolerating being on her computer.

In the past we have had docs throw up their hands and say they were sorry but didn't know what the problem was or how to solve it. We've had others docs who have questioned if it was GI pain, still others who have said, maybe its neurological and she's not really in pain (ummm, no.). We remembered that our local GI had suggested a certain med and praying for a little relief for our sweet little girl we called to ask for it. Instead of prescribing it he ordered a new test. This one was suggested by the GI we saw in NY it was a gastric emptying test. Of course we took action. Honestly, not that we want our child to go through more testing, but it was a glimmer of hope that we might gain more insight into Annie's pain and actually find some treatment. We got the results today, the GI said I have good news and bad news, the good news is that Annie's test was perfectly normal, but that's also the bad news because I am out of ideas and don't know how to help your daughter. I really have great respect for this doctor. He listens to our concerns and really seems to love our little Annie (its hard not to love her). For him to say that he has tried everything, I believe him. I asked him about the neurontin and he said it's worth a shot but that a neurologist would be better equipped to follow her on the med. So now we are on a mission to get ahold of our neuro and get Annie started on this med in the hopes that it may allow her some relief and increase her quality of life.

I FOUND IT!

2010-12-19T20:17:00.001-08:00

My Christmas spirit. That joy of the Holidays, being around family and friends, I found it! Over the past month I have been through a rush of emotions. Starting Dec. I was thrilled that it was getting close to Christmas! I was hopeful. That feeling quickly turned to sadness, then anger, then bitterness. I know a lot of special families have the same emotions, maybe not all in just a couple of weeks like my crazy head but we all experience emotions and I really think we are entitled to them (except the bitterness, I hate that emotion, I don't think it's human and I hate to admit that I feel it at times!). If you have been around me lately its really not anything you could have missed. I have to admit I'm the person who wears my heart on my sleave. Can't keep anything hidden no matter how hard I try, if I'm angry it comes out, if I'm sad the tears run, and I know that my broken heart was shown all over my face for the past few weeks, I haven't been the easiest person to live with. I'm typically a strong person, one who can endure quite a bit. I'm a realist, I look at the big picture, figure things out and press on. That wasn't me this past month. I caved, I gave in, I allowed the enemy to win. The sadness and reality of rett syndrome got the better of me. Knowing that sweet little angels were finding their way home, and fighting for their life at even younger ages then my Annie was just too much to bear. I found myself looking at people and thinking "what could you possibly be sad about?" (I know, bitter right?). I have to say that the Lord showed me quite a few times that I was not the only one suffering. People who I had know reveiled to me burdons that they were carrying that I didn't know about and I have met others who have had more on their shoulders then most can even dream about. It reminds me of something I read: - the quickest way to forget your troubles is to help other people with theirs - . Through this state of bitterness I held on to that thought and I have tried to pick myself up with it and you know what, it worked!

This week I have found my entire outlook changing. I'm excited for Christmas! And its not because we are in a good place "rett wise" (Annie is actually having a very difficult time right now and same as in previous years she will not be able to tell us what she wants for Christmas, open her gifts on her own or smother us with hugs and kisses after opening her favorite gift). Some how that doesn't matter, some how there is actually something bigger, something that is carrying us through and lifting our spirits. I think it's the fact that we are focusing on things that are more important than us, not dwelling on our problems but instead looking at ways we can help others. That's it, that's the spirt of Christmas! Now if I can only remember that for next year and skip the whole "bitterness bit".

In that spirit of Christmas here is some video I took of James and Gracie at their school Christmas celebrations (Annie unfortunately didn't have a school Christmas party) because there is no way that you can hide a smile while children are singing Christmas carols!

Stepping it Up

2010-12-11T17:29:00.000-08:00

in leu of the last post and Annie's very fragile bones we have stepped up our weight bearing exercises - I'm optimistic and willing to try everything but honestly Annie is very active and on her feet quite a bit during the day (health permitting) so I don't think it's the weight bearing that is lacking, but it's worth a try! So, in addition to Annie's normal daily routine of stretching and strengthening we have added an additional 1/2 hour of pure static standing each day. We tossed around the idea of getting a stander but Annie can stand unassisted and I don't want to take that away from her. She stands very well, we are working on posture and alignment and I think you can tell from the video that she is getting straighter. She struggles with balance but can usually correct herself and stand the full 30 minutes without so much as a break. I do have to be within arms reach because if she were to fall she has absolutely no protective reflex so she would timber and land flat on her face - ouch!

If this video doesn't play click here. Sidebar: (notice in the video only 1 arm brace and the unbraced arm does NOT go into her mouth, not even once in the full 45 second video!!! YES! For 2 days now we have been able to go completely unbraced for a couple hours with only a few "out please's!)

Sometimes we have Annie stand with one foot forward we make her hold that position and then we have her stand with the other foot forward (almost as though she is walking with a long pause at each step) to work on the muscles it takes to walk.

Some of the other things we work on are standing on 1 foot - it's modified of course - we use a round, squishy disk - Annie bends her knee and puts one foot on that and weight bears on the opposite foot - she can put some weight on the disk but since its squishy its unstable so she would topple if too much weight was on it.

If this video doesn't play click here

This exercise has been great for strengthening her hips which of course we need for the weight shifting part of walking. We have also been working tirelessly on sit to stand and stand to sit. We have a homemade bolster (rolled up remnant carpet with the carpet side out) she sits on that (which of course is unstable so just sitting causes her ab muscles to fire) and we go up and down and up and down - usually 3 sets of 10 or 15. We work on strengthening her glutes by putting her tummy down on an exercise ball and assisting her with lifting her leg up off the ball. We make her "walk" up stares at least a few times a day which is easy in a colonial when the play room is in the basement! And of course walking, Annie usually laps the house between 15 and 30 times a day (makes me a bit dizzy), in the summer she's able to make it all the way down the block and back and once all the way to the PARK! If there was one way to describe this child it would be motivated! Which is such a blessing!! For the most part Annie is only limited in what I am able to provide. We lost our respite care at the end of summer and I have yet to find anyone, even interview anyone to help out. Annie's not in school much, only about 12 hours a week and school provides very, very little PT and her goals in school remain extreamly inappropriate, Annie is far beyond accomplishing them. She is in in private therapy for 1 hour 40 minutes a week (split between 50 minutes of PT and 50 minutes of OT with the most wonderful therapists on earth!). Of which I am there with her to learn more ideas about what else we can be doing at home. It's difficult trying to single handedly be someone elses hands, feet and voice 24 hours a day when you are also called to be a mother to 2 other little ones and oh yah, a wife too (poor Scott doesn't get much attention these days, thankfully he understands the struggles) - this post was NOT intended to be a pitty party by the way.

I have hope for a cure, so much hope, really, I could honestly say that I would bet my life on a cure, the problem is when? I wish I had a magic ball just so I could know the date. I just want to see that light at the end of the tunnel. I could push through, I really could even if it was longer than expected I could make it if I could just put a timeline a figure on how far out we are. Unfortunately that's just not the way the world works (even though it should :). So I will wake each morning, down the coffee, and continue to put on pot after pot and grab my little girl and continue to work with her all day, every day to bring out what I know she holds inside.

After all, neurons that fire together wire together (to quote the GREAT Dr. Djukic) and if she doesn't use it then she looses it and looking at this beautiful, strong, sweet girl all I see is potential and Love in it's purest form (next to Jesus that is). Loosing it is just NOT an option!

I can do ALL things through Christ who strengthens me! Philippians 4:13

Score 1 for Annie! Wait.... not so fast......

2010-12-03T09:38:00.000-08:00

Dealing with rett syndrome is the equivalent of constantly being on a roller coaster - I HATE roller coasters! I like things to be planned to the last detail, I like to know exactly what I'm in for. With Rett Syndrome there's just no idea what will happen next. Each morning I wake up to Annie's irregular breathing in the monitor and I wonder what's in store today? Is she going to be able to make it to school? If so am I going to get called to pick her up? If I do how am I going to pick her up when I have to get Gracie from her school? If she makes it through school is she going to have a melt down after school? It's a minute by minute guessing game. Annie could have the best morning and then have an afternoon full of screaming fits for reasons that I can't figure out. Or she could have the worst morning full of hours of moaning in pain (again, no idea where the pain is coming from), breath holding and tremmoring and then have an evening full of giggles and smiles. One day she seems so strong that she could actually, possibly take steps on her own, the next day she's so weak her legs are like jello and she can bearly hold any weight. It's a guessing game except there's no reason to guess because even if you're right just wait a few minutes and everything will change. I want to get off this ride but its useless, there's no stop button, not even a pause to catch my thoughts and regroup, its constant 24 hours a day and I DO mean 24 hours. The evening is full of questions as well, is she going to fall asleep before 11pm? If she does is she going to wake up at midnight? If she does what do we do? Give her an extra dose of meds or see if she can fall asleep on her own? What if she doesn't fall back to sleep? Should we turn off her tube feeding? Then she won't eat the next day and her weight is so fragile as it is but if we keep it on will it keep her up? What if she falls asleep in the morning at 4am or after do we send her to school? and so on and so on, the endless list of questions without answers and the constant wondering if I'm doing this whole thing right? Where's the book with all the answers? Why can't this be just a little bit more predictable? With every question and every outcome I become more and more unsure of myself, because of course with every decision there is room for doubt and there are always consequences.

One such example is constant in our lives, the issue with Annie's sleep (or lack there of) and her weight (which despite the tube feeding is still a shockingly low 29 pounds). When Annie wakes up in the middle of the night we typically turn off the tube feeding, somehow it seems to help but only sometimes and we're not sure why. It's one of those things on the list that you try just to attempt to get a few more precious moments of sleep. Soooo, if turning off the feeds helps then keep doing it right? Nope, now we need to play "catch up" to regain the calories we lost in the feed - to compound that issue if Annie doesn't eat at night, for whatever reason, she's not hungry the next day - pretty tough to make up those calories when the girls not hungry. Bolus her durring the day? Good thought but a bolus sends Annie screaming for hours - not sure why, no one can figure that out. What about keep the tube feeding going even if it means lack of sleep? Think about having a new born baby awake a few times a night to eat for the first couple months of life. How tired a new mom is the rest of the day - take that and multiply it times 5 years - that's how long Annie's had sleep trouble - we're TIRED! The whole situation is a catch 22.

So today in the mail we got Annie's scoliosis report. We were thrilled earlier this week when we heard that her scoliosis is now at an undetectible curve!!! YES!! Score one for Annie! Take THAT Rett Syndrome!! We were at an 8 degree curve 2 years ago, then down to a 6 last year and now undetectible!! Awesome right?? Well, we thought so, until we got the rest of the story. Annie's bones are continuing to thin. You know the osteopenia you see in older women? When they fall and break their hip? Well, my 5 year old has that. The report says "diffuse osteopenia consistent with a chronic debilitated state" Rett Syndrome just tipped the scales again. And here comes the guilt - do I get her up enough? Is she getting enough therapy? Are they making her stand and walk at school? How do I stop her bones from thinning if she's been on bone suplements for 4 years now? The conclusion is that there is just no winning the battle. Oh, don't get me wrong, I will continue to do everything humanly possible for my Annie, I will give everything in me until I take my last breath. But, there's just no sense in fighting because it's not my battle and if it's not my battle how can I ever win? This is God's battle, and all I can do is make my requests. God's in control of the situation, in control of all that goes on inside Annie's body and my job is not to fight but to listen. Listen closely to that still small voice that says "She's mine, I've got her". Its so easy to get caught up in all of the chaos, all of the questions and the constant worry and quilt. Today I just need to remind myself to sit down, calm down, and listen. God will direct our next step, He always does, without fail, as long as we let Him.

.....‘Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God’s. 2 Chronicals 20:15

National Day of Prayer for Rett Syndrome!

2010-11-22T18:41:00.000-08:00

The National Day of Prayer for RETT is a facebook event that invites you to pray where you are, anywhere, anytime on Dec. 9!

Do you believe in the Power of Prayer? If so join us as we come together praying for our girls, our families, our researchers, and believing for our CURE. Join us as we storm the heavens for the sake of our children and watch God move in 2011!

"Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. For where two or three gather in my name, there am I with them.” Matthew 18:19-20

On Thursday, Dec. 9 we are asking for everyone that believes in prayer to pray for Rett Syndrome. There is power in prayer and there is power in numbers. We believe that if we all come together and believe that we will see God move on behalf our children. What better time than just before the new year when our research to our treatment and cure is so close. We want this message to reach across the world, just think how powerful it will be to have hundreds or thousands of people on their knees for Rett Syndrome. Pass this invitation on to all Rett parents, family and friends, churches and prayer groups, anyone who believes and will truly pray on this behalf. Are you a believing person but not sure how to pray? We will have a prayer for you that you can use to pray on Dec. 9. Want to spend extra time in prayer? We will have scripture verses that you can meditate on. Do you have a child who is particularly sick and suffering? Give us her name, we will have a list and will pray for these girls specifically.

“Yet, LORD my God, give attention to your servant’s prayer and his plea for mercy. Hear the cry and the prayer that your servant is praying in your presence.” 2 Chronicles 6:19

This event has grown to almost 600 strong! Imagine 600 people on their knees for Rett Syndrome all in the same day! God is working on this event and I pray that everyone who reads this will join us. Check out our facebook event page HERE and commit to pray with us.

Thankfulness

2010-11-22T17:44:00.000-08:00

It's no surprise that the Holidays can sometimes bring a bit of sadness for some people and I think I speak for all parents of Rett kiddos when I say that this time of year is definitely bitter-sweet. I'm pretty sure that's why God has chosen this time to cheer us right up and give us something to hang on to during this time. That something is RETT research breakthroughs!!!!

The first got us closer to understanding MECP2 (the gene that when skewed causes Rett Syndrome) and it's role in GABA cells: Read the article and see video HERE. Dr Huda Zohgbi's lab was responsible for this finding, watch a short video of her thoughts HERE.

Next, Alysson Muotri of UCSD published an interesting paper in the journal Cell. Click HERE to see how he has made cell lines from skin biopsies of kids with Rett. The cell lines can now be used as a platform to screen for drugs. And an interview with Dr. Muotri can be found HERE

Amazing research that just brings us closer and closer to our cure. A huge thank you to my friends and family who continue to support our efforts to fund the research that will one day cure our Annie. We are in a good place, Annie continues to stay strong, she's still very young, she's learning more and more every day and our hope for a cure continues. I can't wait for the day when we get that phone call - I can just imagine our doctor calling with the news of a treatment and we will start the healing process, the process of getting our sweet Annie back and the joy of watching her go through her milestones for a second time. We wait and hope and pray.

Annie's New Language!

2010-11-07T19:29:00.000-08:00

Annie has had her ECO 2 eye gaze computer now for about a month. She is doing amazingly well with it. She is still learning all of the symbols and what they mean and how to navigate through the pages to say what she wants to say. But everyday we get some really good, really appropriate conversation from her. I have to say that this computer has been life changing and it has the potential to bring Annie so much freedom, so much expression, so much personality and so much hope! We are not taking a second of it for granted!

Here is a video of Gracie, Annie and I talking about Annie's day at school (sidebar - Gracie's tiny voice is soooo adorable, she say's "wild turkey's" like 3 times and I've never heard those words sound cuter - I know, I'm her mom, but seriously..... OK enough). This is something we do every day. I take a look at the note that Annie's teacher wrote home about Annie's day at school and then I ask her questions so I know her talk isn't random.

If this video is not working please go here

The other day I was feeding Annie lunch and she wasn't eating (of course). She was in front of her computer but not saying to much when she started throwing a huge fit. I knelt down next to her and asked her what was wrong. She continued to scream and looked down at the floor rather than her computer. I know that it's not the popular opinion to "force" girls with rett syndrome to communicate, or to really "force" them to do anything - they have severe apraxia of their entire body and typically want to do things but literally can't get their brains to give those signals to their body to perform an action. I do get that but I also don't feel like I'm doing Annie any favors by caving in to every tantrum that she throws and I am very confident in her ability to communicate. Soooo, I told her that she had a way to communicate and if she wanted me to help her she would have to tell me what's wrong - she pulled my hair (for a kid without any hand function she's able to pull hair really well!). I walked away and let her continue screaming. After a few minutes her screams calmed a bit and I went back up to her and asked her again what was wrong, I was showing her the symbol for "I have to go to the bathroom" the symbol for "hurt", the symbol for "I have to lie down" all the things and are typically at the top of my list when Annie throws a fit. She started screaming harder than ever and rocking so hard I had to put my hand on her back to keep her from hurting her back against the chair. I managed to scream over her that I could not help her until she told me what was wrong no matter how long she screamed. She stopped, looked at me, then looked at her computer, navigated her way to "I'm finished" and then stared right into my eyes as if looks could kill. I turned off the computer, grabbed her, hugged her, smothered her with kisses and told her that she was the smartest little girl on earth! She had told me that she was finished communicating - (which can be VERY exhausting). And that communication was validated as her, Gracie and I started playing a game and Annie's fit completely subsided. YES!! The rest of the day was rough, Annie threw 2 or 3 (or 15 - who can keep count) more fits that day that I couldn't figure out, but we figured out THAT one and that is a huge deal!! I'm hopeful for a day when I have a quiet house (and still have kids in it :) A day when Annie is so good at her computer that we only see the fits that are "typical" for kids her age not the minute by minute uncertainty and the feeling that she could just loose it at any minute. It's not that I blame her, I always tell her that if I were her I'd be screaming too but for her to have some peace, some say in her life, is the most wonderful blessing!

A different kind of Pain

2010-11-03T09:58:00.001-07:00

I remember when Annie was first diagnosed with Rett Syndrome. I remember the way I cried. I had cried lots of times before then, for things like bad grades, being "unfairly" grounded by my parents, arguments with friends, break-ups with boy friends, the loss of my grandparents, lots of crying in my, then, 28 years. But when Annie was diagnosed I remember sobbing, uncontrolably, a whole body shake. I had never been more terrified in my life. I had never been more heartbroken. The pain of your child hurts worse than anything else in the world. I remember those tears continued to fall for 11 whole months, every single day (except the day Gracie was born, I remember THAT day I was crying happy tears of joy), the terror, the shaking, the tears, and then 1 day it all stopped. I'm not sure what it was, I was still heart broken but there came a point when I just couldn't cry anymore. Oh, don't get me wrong, I still cry, lots of times, just not every day. What's interesting to me is that when I cry about Annie it's still that same, take your breath away, inability to stop, drop to your knees kind of cry. A saddness that has cut so deep that it won't ever go away. It seems to come up whenever something changes in Annie's life, I go back to that moment of diagnosis and think how long it's been, how much longer will it be before she comes back to me and dear God why in the world are you allowing this? One day that question will be answered and I believe 1 day there will be so much joy, a joy that we've never felt before, a joy so great that we will completely forget about all the tears, a joy that will completely fill up that cut that was once so deep. A joy that will never go away. I'm dreaming of that day, and each moment that passes we get closer and closer. "For I will restore health to you and heal you of your wounds, said the Lord". God always keeps his promises, I just wish he would fulfill that promise right now.

James Challenge Update!

2010-11-02T11:29:00.001-07:00

James made a pledge to earn $100 durring the month of October for Rett Syndrome Research. Gracie ended up helping him with the challenge and together they worked their tails off doing chores. They met their goal and exceeded it raising $133.46 for their sister and all the girls with Rett Syndrome! Read the full story here

This mommy couldn't be any more blessed!

Ten things Not to Say

2010-10-31T20:02:00.000-07:00

I encourage everyone visiting this blog to head on over to Life at Manchester Estate. Ten Things not to say is an amazing blog post by an amazing special mommy! Thanks Andrea for putting into words what all of us special needs parents want everyone to know!

Quest for a Cure total!!!

2010-10-25T07:44:00.001-07:00

Quest for a Cure was an amazing success!!! About 400 people walked, $40,000 was raised for research, the weather cooperated and everyone had a great time!

Annie's A-team did great, raising over $4,000 and having 38 walkers!!! Here are a few

Thank you to all who donated and walked:

John Aurelia

Carole Holcombe

Terry & Shawn Lilly

Katie & Craig Jaenicke

April Fullmer

Bobbi Carroll

Mark & Cindy Emmelkamp

Jessica Jones

Chris Nosis

June McIntyre

Katherine Wybo

The Vavrick family

Katie O'Neill

Judy MacDonald

John and Pat O'Neill

The O'Neill family

William & Sharon O'Neill

The Barrett Family

Maureen Schlum

Mary McClorey

Janice and David Smith

Shelly Herzog

Shannon Curcuru

The Wittkopp family

Pastor Doug Schmidt

Twyla Tripp

The VanDenBrouck family

Claudia and Patrick Cassidy

Helen Paletko

Jeremy and Jennifer Brown

Next year as our 2nd annual Quest for a Cure continues we hope to have many more corporate sponsors - if your business is interested please let me know and I will make sure to have you on our list!

Mark your calendars for October 2011 when we will walk again, maybe next year Annie will be walking with us!

It could always be worse.

2010-10-15T18:57:00.000-07:00

So lately with the kiddos going back to school, Annie getting a whole new team, training said team, Gracie starting a new school and having some ( OK tons!) of separation issues, trying to get involved with a new PTA, trying to volunteer in all 3 classrooms, not to mention the typical stuff, therapy, church, Awana (Wed. night church) and of course Annie's allergies and sicknesses, oh and the new eye gaze computer that we've been trying to figure out, and the upcoming IEP, did I forget anything? Oh, the rett syndrome walk-a-thon, Rett syndrome awareness week, James getting 3 teeth pulled,

hmmmm, OK, I think that's it.

Anyways, with ALL of that going on I have been pretty wrapped up in myself and my family lately. Which is a good thing most of the time but some times it can feel VERY self centered.

That's really the way I've been feeling lately.

Self-centered, bitter, angry with my circumstances, and feeling a total lack of support and empathy for anyone dealing with anything other than rett syndrome. Seriously, I have been horrible. I just can't see past rett syndrome I can usually strain myself to find at least one "silver lining" or back door blessing but lately......... nothing!

I've been a bitter person looking at the tree huggers and animal rights activists (and the many other organizations that don't mean a thing to me since my daughter was dragged into rett) like they are CRAZY. WHY in the world would ANYONE in their right mind support an organization like THAT when there are CHILDREN suffering and DYING???!!!

There, I said it, I'm a terrible person! BUT, (and here's my saving Grace), BUT, I don't like this person, I hate this person, I don't want to be this person at all. I have been trying to pull myself out of it for the past couple months but nothing has worked until..........

a magazine arrived the other day from Samaritans Purse. If you're not aware, Samaritans Purse is a Christian organization that assists the hurt, and impoverished. So they have this Christmas magazine that explains in detail different ways you can help improve the lives of these very deserving people. As I read through this magazine I thought,

"wow, it really could be worse".

There were ways to give to mothers who were having babies, no prenatal care, no postnatal care, there were ways to give milk to children, ways to save little girls from trafficking, and then, I saw it

every other need is so worthy, but I was moved to tears when I turned the page and saw this little girl in a wheel chair, wringing her hands (classic sign for rett syndrome) and the caption read "transform the life of a disabled child".

Wow!

OK God,

I GOT it.

I have it pretty, stinkin' good! And so does my little Annie. Although suffering daily from Rett Syndrome, she is suffering in a warm house, with a family that loves and cares for her, an extended family that will always support her. Resources, physicians, health care, insurance, adaptive equipment, therapy (with the best therapists in the world I might add), and support that will never quit as long as her mommy and daddy are here.

This beautiful little girl in the magazine, rett syndrome or not, is suffering WITHOUT any of these "luxuries". She is most likely alone, abandoned by a family who couldn't afford to take care of her. I imagine her fear, her loneliness, and her sadness. It's almost too much to bear. No child should live her life alone, no child should live her life in a chair, no child should live her life unable to communicate, no child should live in poverty - NO CHILD, EVER! But when these things collide and leave a child in the most helpless of helpless places we should never allow it.

There is always someone worse off and I challenge you to find a person more deserving then an abandoned, handicapped, impoverished child. No tree in the world, no animal, takes precedence over THIS child.

Sooo, the world can scream "go green" or "save the whales" but I'm going to scream back "Lets save our kids first!"

If you agree with my bitter rantings would you join me in helping "transform the life of a disabled child". I know it's early to think about Christmas and I know that special needs parents no matter what their income typically don't have "extra money" to shell out, but I pray that we can raise enough money to help just 1 little child just $250 from now until Christmas to show an abandoned, disabled child that someone is thinking of them, that someone cares, that someone understands a little part of their suffering. Click the link if you agree and scroll down to #7, every $1, $5, $20 donation will get us closer to helping a child who is so truly deserving.

I Challenge You!

2010-09-30T17:54:00.000-07:00

Tonight I sat in my bed , watching a little TV, unwinding. I hear a "MOM!!" It's James, he's fighting something so I run in "what is it Jay?"

"My stomach and my chest hurt really bad"

"OK buddy, come on down and into mommy and daddy's room"

James proceeds to hop in my bed and I ask him some questions about what's wrong. We discovered it's a combination of indigestion and gas. Poor James is curled up, holding his breath and saying "It just hurts so bad". My mind goes to Annie - she spends most of her day, most all of her day's in this type of pain. I tell James "ya know mom can give you some medicine for that"

"What is it?" James asks.

"Mylanta"

"The stuff Annie takes all the time?" He asks

"Yup." "Ya know when Annie cries and screams, this is usually the reason, her tummy hurts a lot and she's not able to tell me so she cries."

James: "I'd cry and scream too. She's really smart....... Rett Syndrome really stinks"

"I know buddy. That's why mom and dad are always asking people for money, so the researchers can find a medicine to take it away."

"Mom, I'm going save my money and when I have $100 I'm going to give it to the researchers so they can help Annie"

"how are you going to save all that money James?"

"I'm going to do all the chores I can here and at Grammy's and Aunt Jen's and Aunt Katie's"

"You have a good heart buddy, I love you!"

"Love you too mom"

You see, James remembers a time when Annie wasn't sick. When Rett Syndrome was "hiding in her body" as he say's. He remembers when she said "Hi Jay"! and threw a ball, and was able to grab him and hug him all by herself!

He remembers when she could play "peak a boo" with him.
He remembers when her hands worked so well she could actually hold a book and turn the pages.
He remembers when they could play together, not him doing "hand over hand" to play with her.

He remembers when she could crawl,

and feed herself.
When he was able to rough house with her, not worrying about "brittle bones" like he has to now.
He remembers when Annie was able to care for him, instead of him always being her caregiver.
James has been Annie's #1 supporter since she was born, just 16 months after him.

James remembers before Rett Syndrome. When his best friend could play. He tells us that whenever Annie's in his dreams it's always "after her miracle". He wants his sister back.

So here's my challenge to you. My 7 year old is going to raise $100. Can you match him?

What can YOU do to raise $100 in October - Rett Syndrome Awareness Month?

Skip dinner once a week for the month?

Skip the coffee at the coffee shop?

Ask 10 coworkers for $10?

Join us at Quest for a Cure and get pledges to walk?

There's a million ways to get your hands on $100

Will you take the challenge? Will you play your part in saving the lives of 30,000 little girls in the U.S. alone? Will you help relieve their pain and give them a voice? My 7 year old is! Join him in his fight to get his sister back! Visit Annie's Page to hear her story and donate on-line.

An Open Letter to Special Needs Professionals

2010-09-29T09:41:00.001-07:00

This was posted as a note on a friends facebook page, I just had to share! What perfect timing with all that is going on in our lives lately!

An Open Letter to Special Needs Professionals

By: Pia Prenevost

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello...

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well ... you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see ... a confident parent ... or an angry parent ... or a happy-go-lucky parent...

You might think that I understand everything ... or nothing ... or that I have all the experience in the world because I have done this before ... or that I know the rules ... or that I don’t know the rules and that is for the best... You might believe ... that I am high maintenance ... or overreacting ... or maybe neurotic ... or disengaged and uninterested ... or that I don’t really care ... or maybe I care too much...

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents ... the ‘special’ ones ... can be a pain in the ass. I know that. We know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves.

We are your harshest critics. We are our own harshest critics too.

We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

----

This essay was previously published on www.thecrackandthelight.com

I know, it's been WAY too long!!

2010-09-24T20:09:00.000-07:00

I haven't updated in a really long time. So sorry. You know, life, it totally gets in the way of everything that I have to get done :) Soooo, I'm giving you the shortened, run down of what we've been up to the past month or so....

School started on September 7! I now officially have a preschooler, kindergartner and first grader! Yikes!!

James is LOVING school! Which is such a blessing. He just loves learning, always has. He had a beautiful time in preschool but kindergarten for some reason wasn't the best fit for him. He's now going to a new school and he couldn't be more thrilled with 1st grade! I'm a little sad that he's gone ALL DAY! but to see him bounce into school and skip out of school with a huge smile on his face and tons of stories to tell me, well, it's sooo worth it!!! Oh, did I mention that he goes to the same school as Annie - LOVE IT!

Annie is in a new school as well. She had a LOT of changes happen in a short time. Annie was going to summer school and had an amazing teacher. This teacher was incredibly interested in Rett Syndrome and was excited to help Annie get her eye gaze computer. It was her job to help us with our therapeutic goals and after a few weeks I was so confident that she would just be wonderful for Annie. And then she moved to Japan!!! Oh CRAP! So thankfully Annie got a new teacher (pictured here) and YES, Dana is just as sweet and wonderful as she looks in this picture. She LOVES Annie! The only problem is that we are STILL having issues with our therapy goals (we have incredibly inappropriate PT goals and we have OT services but NO OT GOALS which is illegal but no one seems to care, even the lawyer that we hired last spring when this started - yah, I'm mad.) and we have not only gotten a new teacher but an entirely new team. So we are once again training, teaching, educating, and trying to get a whole new set of people to "understand" Annie! I can honestly say that I am so tired of trying to explain everything to everyone that I am just about ready to throw in the towel and say "forget it! she's not going to school anymore!" We have dropped her from full days to half and from 5 days to 4. We have LOTS of meetings set up so we will see how they go and try to find the best fit for our beautiful, eager to learn, Annie! I'm hoping and praying that we can get Annie into the right fit and get her some goals that she can reach for.

Honestly, could this child BE any cuter!? This is little Gracie's first crack at school. She is going to the preschool at our church. There's a little "separation issue" and I thought it might be easier to be at a place where she's familiar, uhhh, I was wrong. Gracie LOVES people but only people she knows, like the kids in our neighborhood I swear she would walk right in their house, turn on the TV and ask for a juice box, but people she doesn't know, she pretty much hides behind me and refuses to speak. Gracie is the kid that kicks and screams and cry's when her mom leaves the classroom (reluctantly, after a 1/2 hour of tying to acclimate her). So I'm patient because this IS her first time at school and Gracie, although upset about leaving me, is very eager to tell me all that happened in school and how fun all the kids are! Sooo, I'm hopeful that the separation will get easier. The great news is that Gracie is a smart little lady, she won't have any issues with learning and this preschool is so amazing about teaching the kids about the bible and Jesus - Gracie is already equipped with prayers that she's "teaching" the rest of us!

Little G - hard at work!

The next new thing happening with us is that we have ripped out our rickety, crumbling, carpenter ant infested, inaccessible deck and have put in a new cement patio with all the bells and whistles. We started with the front yard and added "ribbons" on the driveway to widen it so when we pull Annie in and out of the car in the winter our feet aren't standing in snow. We then put in a walkway from the driveway to the back patio. Finally we put another walkway from the main patio to a second patio that leads close to the

"jungle gym" for the kids.

Annie "supervised" the whole project!

We started with re-staining the jungle gym - thankfully EVERYONE helped!

Then we "demoed" the deck! Mostly Scott's job but we got some great help from Uncle Jeremy!

Oh, and Gracie!

This is the enormous dumpster, and NO, there was no problem filling it!

Then came the sod cutting and the gravel laying.

Here is the final driveway "ribbons"

The final walkway from the driveway to the patio.

The small patio and walkway leading to the main patio. The small patio will eventually be "Annie's Oasis" - filled with purple (her favorite color) flowers and fit with a padded glider that she can just relax on.

this is the main patio shaded by our maple. We got a fire-pit and a patio heater so we can enjoy the outdoors even in the fall. Oh, and it's completely accessible for Annie!!! She can "walk" everywhere!

We've been enjoying it by roasting marshmallows,

The kids have loved riding their bikes, scooters and pulling Annie in the wagon all over the patio!
Look how happy this little girl is! I know 99% of it is because she's with her daddy but the other 1% is because she can use the WHOLE patio and get up the the jungle gym to play with her sister and brother!

Next we celebrated Jay's 7th Birthday!! Oh man, I know, he's 7!!! Instead of a "friend" birthday James opted to go camping with his family - my little outdoors man!

Jay leading us on a hike

Annie, loving the outdoors! (rockin' the 80's pony tail!)
James, cooking dinner

James, hard at work!
Annie, loving every minute!

All 3 at the campfire!

How Gracie camps!

We spent Friday night with just the family. The cousins came up on Saturday, just in time for the rain. All the kids came back to our house for a sleepover in front of the fireplace in their sleeping bags watching movies and eating pizza - nice and dry!

Sooo, other than that, not much. Oh, Annie climbed a tree for the first time (just kidding but look how happy she is to be sitting in a tree with her brother!). Ok, so that wasn't such a quick post but I had to get in all the pictures! Oh, and we have gotten APPROVED for Annie's eye gaze computer the ECO 2. It arrives in just about 2 weeks! So there will be a lot of talking going on in our house. Stay tuned for videos!! :)

Quest for a Cure!

2010-09-18T19:04:00.000-07:00

10-10-2010 we will be walking to END Rett Syndrome for Annie, the 30,000 girls that suffer in the US alone and the baby girls that are born every 90 minutes that will have their freedom taken away by Rett. Will you walk with us? This is your chance to be part of a miracle! Grab some friends, coworkers, neighbors or bring your family and sign up at: www.questforacure.net . Don't forget the kids! There will be a clown with face painting, balloon animals, prizes, games and of course, TONS of food! Help make Rett Syndrome the first reversible brain disorder! If you are unable to make it to the walk but still want to help, visit our First Giving Page and make a donation in honor of Annie!

Imagine

2010-09-04T19:29:00.000-07:00

Lisa Leonard is an amazing artist who creates the most beautiful handmade jewelry. Her creations are wonderfully inspiring so it's only fitting that her latest creation was made for Rett Syndrome, for our girls, for OUR cure! It's called "IMAGINE" , costs only $40.00 plus $7.00 for shipping and ALL proceeds will be donated to Girl Power 2 Cure!

I can imagine a life without rett syndrome!

Leave a message or contact me to order yours!

A Hiking We Will Go!

2010-09-04T19:08:00.000-07:00

It really cooled off today - in the 60's! Hard to imagine just a couple days ago we were swimming in 90 degree weather. Today was perfect for a hike! We went to Stoney Creek. The kids loved it! I love how each of their unique personalities shines:

How James hikes

How Gracie hikes

How Annie hikes

Lunch on the trail

A WONDERFUL day!

2010-08-31T06:24:00.000-07:00

Honestly, Rett Syndrome is very hard to deal with on day to day basis. Annie's entire body is effected by Rett, there is not 1 thing she is able to do on her own, this is a very tough life both for her and our entire family. I remember when she was first diagnosed I was swarmed with stories of people with disabilities who had beat great odds - a man without legs who was able to run a marathon with prosthetics, a quadriplegic who had set up a website and started her own thriving business, you know the inspirational stories that pop up in the news. The problem is that I have a kid who's brain doesn't talk to her body - Rett Syndrome is so different - it affects everything and there isn't a treatment, a technology, a prosthetic, or anything that would be able to catapult Annie to be one of these "inspirational stories". Sooo, what we have had to do is change our perspective. We had to start shooting a little lower and start realizing that every accomplishment, no matter how little, IS inspirational - maybe not to the rest of the world but to us, to Annie, to our family any stride Annie makes is a reason to celebrate and rejoice that we have taken back that little piece that Rett has stolen.

That being said, I want to share the most wonderful day we have had in a very LONG time! Last week Wednesday Annie and I headed out to therapy like we do every Wed. During OT I called our cardiologist to get the results of Annie's 24 hour Holter monitor. Perfectly NORMAL! Throughout the entire 24 hours Annie's heart was completely healthy and normal! Praise God! I was so thrilled and relieved. OT finished and Annie and I headed to Target for lunch. While eating I called our insurance company - making a pest out of myself I had decided to call every other day so that our primary insurance would hurry up and reject the claim for the eye gaze computer (I was certain they would not pay for it) so the claim could then be sent to our secondary insurance co. (whom I was sure would pay for it but only after they "thought about it" for 6 months or so). You can imagine my surprise when our insurance company said, "oh yah, the claim from PRC, we approved that yesterday, your letter is in the mail". I have never been so thrilled, I thanked the guy on the other end and then proceeded to explain how much this device would mean to us, that I have an almost 6 year old who has never uttered a word and would finally be able to "speak". Yes, as usual I talked for too long and offered way too much information, I hung up sobbing happy tears, the guy on the other end was probably left wondering if he should have called mental health! So lunch ended and we headed back to therapy this time for a little PT. Annie was in the best mood (wouldn't you be if you had just been told that soon you would be able to communicate?) and she just shined in her session. We have been working on transitions, sit to stand, stand to sit, for years - what a process, so much we take for granted. Annie has slowly been able to get the strength to perform this task but typically it takes moderate assistance. This particular day Annie went from sit to stand and stand to sit with only verbal prompting and a hand for stability! Imagine, a child who's brain doesn't communicate with her body and yet she still fought for her body to get past the apraxia and follow a command! I couldn't have been more proud of her! I can't tell you how much I cried last Wednesday, it was a lot but the weird thing was it was happy tears! That doesn't happen very often, I didn't want that day to end. I'm praying for a time when the happy tears far out weigh the sad ones. Each day we get closer! Until then I will hang on Annie's accomplishments, no matter how small they may seem to the rest of the world.

Another Test

2010-08-19T21:25:00.000-07:00

Our very special Dr. Djukic from Montefiore in New York suggested we get a test done on Annie - a 24 hour Holter monitor which is basically a 24 hour EKG of the heart. Girls with Rett Syndrome can sometimes have long QT wave which is when the resting period between heart beats is elongated. We've been followed by a cardiologist since diagnosis, our appointments have gone from every 2 years to every year to every 6 months. We've been skeptical, for sure, but when we have questioned about Annie's heart everyone has always told us that everything is OK! Dr. Djukic suggested that Annie's heart rate may be a little slow, in addition her breath holding due to apraxia was concerning thus the suggestion for the Holter monitor. So of course we jumped right on it and asked our cardiologist for a script. Annie was fitted yesterday.

I absolutly hated seeing all the wires on my tiny Annie and she had had a long day (OT and PT therapy before the monitor fitting) so the two of us were a pair when we left the health center. Instead of heading straight home to grab James and Gracie we decided to take a detour. I had a few things to take back and decided that the only thing that makes a girl feel better is a little shoe shopping!

Annie picked out these two cute pairs. We couldn't decide which were cuter so she got them both. She deserves them! We felt a little better after that. Thankfully Annie didn't seem to be bothered by the Holter so it turned out that this was the easiest test that we have ever had. Results by early next week.

Proverbs 4:23 "Above all else, guard your heart, for it is the wellspring of life."

What I love about Rettland

2010-08-11T18:38:00.000-07:00

1. When the docs are stumped there's always another Rett parent that has an idea!

2. You can meet a family for 30 seconds in the hallway of a clinic and become instant friends, exchanging email addresses, phone numbers and getting invited to their house for brunch the next day! Yes, this actually happened in New York when we met the Gutierrez family!

Ingrid and Sarah, me and Annie, Stefanie and Anna

3. When you're having a bad day the people in Rettland actually understand the extent of it - the rest of the world says "everyone has bad days".

4. You can completely fall in love with someone else's child just by looking at their picture and knowing the struggles they face.

5. You can become instant friends with another parent because you know first hand the hardships and heartbreaks they feel.

6. There is hope here. Hope that most of the world can't seem to grasp.

7. There is support and love beyond anything I have ever seen.

8. Other Rett mom's!

Last weekend I had one of the best times of my life when I packed up and spent a weekend in Las Vegas with 9 other Rett moms from across the country! I had such an amazing time. We talked, compared notes, shared ideas, vented, laughed (no crying!), but mostly relaxed and had fun. I was so thrilled to be in the presence of these wonderful mothers who knew exactly, first hand everything that I have gone through and am currently dealing with. I learned so much and have come back a little changed. There's something about being with people who have walked your walk that makes this whole Rett thing less segregating and just a little more, dare I say, "normal". I can't wait to see all the "Vegas girls" again but for now we have our blogs and our facebook. I hate that our daughters are living with Rett Syndrome but I love the bonds that I have made. There's going to be some kinda killer party when we get cured, I can tell you that!

(oh, and ladies, take your computer off of mute, our song is playing!)

Proverbs 18:24 ".... A true friend is more loyal than a brother".

New York

2010-07-25T18:24:00.001-07:00

This weekend we took Annie to New York to visit The Montefiore Rett Clinic. We have hit some roadblocks in Annie's care here in Michigan, namely her GI and sleep issues, and had talked to a few families here that made the trip out to New York and were thrilled with the care they received. We hesitated at first - lets be honest, New York is not the cheapest place to visit and we are not the wealthiest of people so spending the money to fly, stay and pay for medical expenses was not something that we took lightly, however, after talking with Dr. Djukic, the head of the clinic, I told Scott that this was the place that Annie had to be. He agreed and plans were set to go.

Leading up to the visit I gathered Annie's medical chart, school information - IEP's, and all of her therapy reports. Dr. Djukic ordered tests - blood and urine - that we did at home and had the results sent so that we could discuss while we were in the clinic. We had a lot of correspondence prior to our visit and I have to say that I have never met another doctor more compassionate about our little Annie than Dr. Djukic. I was so thrilled to be going out there to meet her in person.

We landed Thursday evening and headed to the hospital on Friday morning. We checked in and sat down, waiting for a nurse to call us in to see the doctor (Special needs families you know, the typical drill - you sit for an hour, the nurse calls you into a room, gets the vitals then you sit for an hour and see a resident, then you sit for an hour and get 3 1/2 minutes with the doc - am I right?) but instead what we saw was Dr. Djukic racing into the waiting room arms wide open, she gave us a hug and then knelt down to say Hi to Annie - waiting patiently for her to respond with a smile. Then she looked up at us and said "what are you doing? OUR girls don't wait" and took us straight back into the GI's office for an appointment with our first doc of the day.

We voiced our concerns to the GI specialist and he explained to us different scenarios of what may be causing our little Annie's pain. Thankfully our great GI doc at home is willing to collaborate with our Montefiore docs so no tests were run in New York but what we do have is a plan of action to get to the bottom of Annie's pain and improve her quality of life. I'm anxiously waiting to get the final report so we can started!

Next we had Annie spend some time on the eye gaze computers. Dr. Djukic is very passionate about our girls communicating (as are Scott and I!). She believes in our girls and knows that they are very smart little ladies that are quite literally trapped inside their bodies - desperately trying to do even the simplest of things but roadblocked by apraxia that consumes their whole body. This is exactly the way we feel about our Annie, but to hear a Specialist, not just a specialist but a neurologist who studies how the brain works, to have someone in a position like THAT confirm the intelligence of Annie is something very special. She went on to explain to us a little bit about the latest research that is going on in Rett Syndrome adding that her belief is that in 3 to 5 years we will have a treatment and in her lifetime she is certain she will see Rett Syndrome be cured! I believe with my whole heart that I will see Annie cured as well, but as her mom sometimes I feel consumed by that fact. I believe it but I start to wonder if my brain is believing to save my heart from being crushed by a life sentence of Rett. There is something very real when you hear a specialist of that caliber make such claims - chills ran through my body as I tried not to cry in happiness! We spent some time talking about Annie's current therapies and school and how it's imperative to keep Annie moving, learning and healthy because when her cure comes we want HER to be ready for it and have all the tools in place for a complete recovery.

Here's where I get a little cloudy, a little emotional and a little anxious. I mean, can you imagine? Here is a 5 year old girl who is completely dependent on others for every single aspect of her life. Here is a girl who is unable to walk, talk, crawl, feed herself, color, flip through a book. She can't tell me when she's hungry, tired, or when she has to go to the bathroom. She is in constant pain but can't explain where it hurts. She is at the mercy of the person who is caring for her, she doesn't have a say in anything! And all of a sudden one day there is going to be some drug that may reverse everything and bring her back to a "typical" 5 year old? WOW, I just can't seem to wrap my head around it. I mean it seems great but also a little unnerving. Am I right or crazy?

There has been so much emotion surrounding rett syndrome since our Annie's diagnosis - rightfully so. I remember when Annie was first diagnosed, there were stages of grief that we, as a family, went through (and may still be going through) and lots of questions and emotions that we had. We also saw our extended family and our friends go through their own type of grief and pain for our Annie. There were questions about God "How could a good God do something like THIS to a BABY girl"? - As questions go, this is a good one! One that is very hard to answer. I am reading a book right now called "The Reason for God - Belief in an Age of Skepticism" by Timothy Keller (a good, but slow read for me, it is very philosophical - I highly recommend it if you're into that kind of read). As I was reading on the plane I read the chapter "how could a Good God allow suffering?". What a perfect time for this "chapter" of our life. So I read, and the book discusses how there is so much Good that comes out of our suffering and how many people feel like they would not be in the place they are today had they not have "walked through the fire". No doubt if you have read this blog before you know our take on that, right? - I can go on and on about how Rett Syndrome has changed us for the better. Anyway, the book goes on to question how we could ever feel profound joy if we have not felt profound suffering. Oooo, good point! Think about it. Imagine you have had everything handed to you, that you have never felt the anxiety of not being able to pay a bill, or the hopelessness of a loved one with a terminal disease, or the sting of a divorce or any of the other millions of things we ALL suffer with, think about it, if you never, ever suffered, would you ever be able to feel REAL joy? If you are honest with yourself, the answer is "no" - there is no joy without suffering. So a God who "allows' suffering, maybe, just maybe, He is doing that so His children will feel more intense joy than they would have, had they not suffered - ya think? Soooo, we return full circle to Annie and her cure, and I think about her walking - most parents at a childs first steps may video tape and clap. Me, with Annie's first steps, I can assure you, I will be on my knees and crying in happiness. Most parents, at a childs first words, may video tape again and write in their scrap book. Me, at Annie's first words - you will again, find me on my knees and weeping over the miracle of my daughter. You see the intense joy that will be from the suffering. I imagine God saying "my child walk with me through this fire and I will show you joy unspeakable" and that, my friends, is exactly what we intend to do. Maybe not gracefully, maybe with doubts and anger and frustration but we ARE walking through this fire and are confident that the God who "allowed" this suffering is the same God who will show us the joy that is to come from it! ( I know you're probably thinking "lay of the philosophical books"! and I can assure you I will as soon as I get through this one :)

OK, so, obviously this should have been 2 posts, but where was I in the Montefiore visit? Oh yah, so Dr. Djukic gave explained to us a few things that were a little disheartening but none to the less information that we need to know about our Annie. The first is that her breath holding is a concern. We thought that breath holding was simply that, Annie was holding her breath, unfortunately its actually due to the apraxia that Rett Syndrome brings. Annie is breathing and apraxia sets in actually causes a restriction in the air flow so her breath is held involuntarily, what's worse is that this is painful for Annie. Ouch, that was hard to hear because Annie breath holds all day long. Dr. Djukic also encouraged us to move away from trying to get Annie to use her hands in OT, that all the OT in the world will probably not lead to much restoration in hand use. This is something that Scott and I probably already knew but never really said out loud before, we are always putting Annies communication and physical therapy ahead of her hand use so we weren't too devastated at the news and really, it opens up our OT to work on things that Annie WILL be able to improve on, namely switches and aug comm. devices. Lastly Dr. Djukic gave us some vials to take home to collect Annie, James and Gracie's teeth. When our kids loose their teeth we will send them back and they will extract the stem cells from them and then bank them. Once there is a med that "hits" in the rett knockout mice we can test the med in the stem cells to see if it is safe for Annie. Again, getting us closer to that cure!

After our conversation we went to radiology and met with another blessing, Dr. Andrews. She performed a swallow study on our tired, "fed up - to- here" Annie. Needless to say there was not much "swallowing" going on with our patient but we did see that Annie is silently aspirating with thin liquids. Not a surprise, we see lots of coughing and spitting up with Annies sippy. The silver lining? We only give Annie water (because that's all she wants) and aspirating water is safe. We spoke with Dr. Andrews about Annie's inability to clear her 'palate" and decided on a very unconventional and very uninvasive way to treat that- basically just giving her Italian lemon ice with her meals - that's easy!

We also met briefly with an endocrinologist because during the blood test prior to our trip we found out that Annie has hypoparathyroidism. The endo told us that because Annie is currently taking calcium supplements her calcium levels are within normal limits so we should just continue with what we're doing.

In the end the trip was a success and we are very happy with the information and help we received. It is so encouraging to know that we are being supported in every area of Annie's life. To know that we are not alone and we don't have to battle everything ourselves lifts the weight that has been on our shoulders for so long.

I didn't take too many pics, I was a bit distracted, but here is a cute one of Annie enjoying being an "only child" for the weekend.

Ladies Day Out!

2010-07-17T19:04:00.000-07:00

Gracie is getting older (ok, it's relative, she'll be 4 in October) and she is really starting to feel the need to spend more time with mom. I can see the look in her eyes when Annie needs me and Gracie wants me to dance with her, or when Annie's crying and Gracie wants me to play "my little ponies" or when Annie needs to be fed and Gracie wants me to play dress up, or any of the other millions of things that come up when Gracie wants to be with her mommy. The look in her eyes says "what about me?" and that look just kills me! I have been trying harder and harder to be more available for Gracie and have been once again trying to tip the scales and keep all the balls juggling in the air so that ALL of my children feel loved, supported, encouraged, heard, held, and felt that they were irreplaceable, which in fact is exactly why God trusted me with these amazing kids. Soooo, since Gracie is my "girly girl" I took her to get a manicure (the "salon" is something that she has been wanting to do since, well, um, birth)

drying her nails - first time at the salon and she knew exactly what to do!

Gracie picked her own color!

What's a girls day out without lunch?

And of course a little shopping after lunch!

I LOVED spending the day with my sweet, little Gracie and judging from the HUGE hug I got at bedtime tonight and the hundreds of "thank you mommy"'s I know Gracie loved it too! I just pray she feels like she is the most special and loved little girl that ever lived! Because, of course, she is!

Tiny Dancer

2010-07-12T15:28:00.000-07:00

Gracie is in dance again this year. She LOVES it and is just the cutest little ballerina.

Back at it

2010-07-09T14:57:00.001-07:00

Annie started therapy again this week. We had almost 3 months off due to insurance dragging their feet on approval. This happens from time to time and some times its a nice break but we were sooo excited to get back! OT and PT are both on Wednesday now, which is great because then we only have to make the drive once! Annie is such a motivated little angel. She loves to be up and about and complains if she doesn't get enough "exercise" in her day. She really makes it easy on us, we don't have to force her to work. That said she has her days when she's feeling lazy, like we all do, but you can tell by the pics she's happy to see her friends again.

Amy and Annie working on standing and balance

Amy has been working with us for a few years now. She's amazing. She knows everything! Any time I have a question she has an answer for me. She's very supportive of Annie but more importantly she believes in her and is positive about all the improvements Annie has made!

working on sitting on the floor to standing

Walking! This is Annie's favorite, she loves to walk!

Sit to stand, with a possible reach to knock the tower down

This is the infamous Mr. Andy. He has been Annie's OT since before diagnosis - yes, 4 1/2 years! Andy is amazing. After all this time Andy still ALWAYS has new things to do with Annie but at the same time he never grows tired of teaching her the same thing over and over. Andy is full of compassion and treats Annie like a typical kid, always talking to her and joking with her (which my special needs moms know is awesome! When a kid can't talk people tend to stop talking to them). Here's Andy and Annie finger painting.

and cleaning up!

We are so thankful to be back at Beaumont and so blessed to have our wonderful therapists!

I Could Really Use Your Help!

2010-07-02T04:35:00.000-07:00

Here's the scoop. Chase Bank is giving away $5.5 million dollars to non-profits in a facebook campaign. All you have to do is vote once - the non-profit with the most votes gets $250,000, second through fifth place gets $100,000 each! Girl Power 2 Cure is in the running currently we are in 11th place! If we win the $250,000 we will put the money into our Garden of Hope Campaign and grow it to $2.5 million for Rett Research!.

This money WILL change our daughters lives!

The thing that makes my stomach turn: there are 2 non-profits ahead of us - an organization for bears and another one for blind cats -

Yes, I said bears and blind cats have recieved more votes than our children.

I'll give you a minute...........

Sooo, I am reaching out to everyone in the blogging community and asking for you to please, please post to your blog and ask your readers to vote for Girl Power 2 Cure! This IS a FB campaign so they will need to have a FB account.

If you aren't able to do a blog post could you do a FB post to all your friends?

Could you tweet it?

And don't forget to vote yourself!

Go to www.girlpower2cure.org/chase to learn more about the campaign, what the money will be used for and click on the link to vote for us!

I know much of the blogging community is made up of women - Rett Syndrome only affects females and is the leading cause of severe impairment in girls and women! Lets show our Girl Power and get some votes to cure our girls!

If you are unsure of what rett syndrome is and how it affects our baby girls please read our story here: www.girlpower2cure.org/annie

Researchers successfully REVERSED Rett Syndrome in a mouse in February of 2007. With the proper funding they can reverse rett syndrome in our girls - are we really going to allow money to stand in the way of saving these little girls lives??? All it takes is a click!!

Thank you!!!

Much Love!