Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.

Friday, May 14, 2010

An Update

We've had a crazy week (so what's new right?). Just a couple things that I wanted to share in the hopes that our followers will keep Annie in their prayers. If you follow this blog no doubt you have seen that our little Annie hasn't been herself in a little while. Well, we saw her neurologist this week and they were concerned with Annie's excessive sleeping last month coupled with the shallow, rapid breathing we saw when she was sleeping. That sleepiness has since lifted and now we are back to her normal routine (which is anything BUT normal for a 5 year old). Annie typically wakes up between 2 and 5 times a night for anywhere between 5 minutes to 3 hours we've tried many things to get her to stay asleep (we don't have problems getting her to sleep, but staying there is the issue) and we have settled on Benedryl - it gets her back to sleep with in 15 or 20 minutes, gets her to sleep for at least 4 to 6 hours and with all side effects considered it seems to be the safest bet for our little angel. However, we have been using this for a couple years now and would really like to see Annie establish her own, healthy sleep routine.
Anyways, back to the neurologist, He was very concerned about her excessive sleeping month and weird breathing and the fact that Annie's "normal" routine is very much abnormal. He has ordered an MRI of Annie's brain to determine if she possibly had a virus that may have caused damage to her brain. He has also set up a consult with a sleep medicine/pulmonology doc. I don't really feel like it was a virus that caused all of this but I do know that Rett Syndrome will quite often take our little girls in their sleep and I can't tell you how unsettling it is to see your daughter sleep to those lengths especially while they are having quick, shallow breathing (pass the xanax please). Hopefully the tests and the new doc will shed some light on what's going on and possibly have some sort of solution for all of this. I just pray that Annie will never have a month (or day) like that again. Oh, an added bonus, Annie needs to be put out for the MRI - awesome! Prayers for a clear MRI, an uneventful time spent under anestesia and a remedy to Annie's unsettling night time sleeps would be so appreciated.
To add to the madness we had Annies move-up IEP to kindergarten this week. You special needs mom's are feeling me right now and those who aren't familiar an IEP is an Individualized Education Plan for the school and to put it bluntly the more needs your child has the more stressful the meeting is. Moving to kindergarten is very tough because preschool is soooo safe! There are many things that have gone into this plan including our oldest James, which I know seems weird but I will give more info later, when our IEP is finalized.

Lastly, we spoke again with our GI doc. He is a great man and has served us well but even He is stumped by Annie's continued GI pain and screaming fits. Although they are not as intense as they usually are we are cautiously optimistic and would not be surprised if they came back full force very soon. Our doc has basically told us that he has done all he can and that there is nothing more he can do at this point. Thankfully at this same time we were introduced to a doctor in Chicago that may be able to help us. He is very familiar with Rett Syndrome and may be able to shed more light on what's causing our Annie so much pain. The only problem now is insurance and it actually covering an out of state doctor. So we could use your prayers in this area too!

This is what we have been dealing with this week. At times it seems like its just too much but all of these issues may bring us brighter day's, relief from pain and a stronger, healthier, happier Annie. We hold onto that and pray that God's hand continues to stay firmly planted on our sweet Annie.
"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

Sorry this was such a "downer" post - that is the reality of Rett Syndrome, however, I am blessed to have some comic relief when things are looking bleak from my other 2 kiddos. Here is Gracie showing her wii boxing moves - her new favorite thing - although she likes to play by herself much better because the punching bag never wins!
video

3 comments:

  1. I'm sorry all this stuff is happening all at the same time :(. I hope that the doctors find something that can help Annie through this rough time. hugs. And good luck with the IEP!!!

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  2. So sorry.....I will keep your family in my prayers.

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  3. I found your blog while searching for other's who write about their kiddos with special needs. Thanks for writing, and we will be praying for your Annie.:)
    Andrea
    http://munciemenn.blogspot.com

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