A WONDERFUL day!

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

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

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".