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Ryan's & Alyssa's Web Page 
Welcome to Ryan's and Alyssa's Web Page. They both have Krabbe Disease and this web page is devoted to keeping friends and family updated on both our children.
Journal
Wednesday, April 1, 2009 11:00 AM CDT Hi,
New Photos Added
I am sooo sorry, it is hard to believe that I haven't updated since before Christmas. No news always means we are very busy, sometimes good and sometimes not so good.
The kids have been keeping us on our toes all winter long. Alyssa has had some set backs that we are still trying to figure out. She was on oxygen and needed her vent for a few weeks after a bronchoscopy. This was odd since she has already had numerous and has never reacted this way before. Then she experienced an electrolyte imbalance and was hospitalized. We aren't sure why this happened but it may have been linked to her pemidrinate(IV med) which she received to help strengthen her bones. Due to her November fracture of her femur, she has lost lots of strength because her full leg cast stayed on for almost eight weeks due to slow healing. We were hoping last Fall to decanulate Alyssa in the Spring but now due to her set backs, we won't be able to. She isn't quite back to her baseline yet. We are praying this is just temporary and someday, she will be strong enough to get her trach removed. She is off her vent about eight hours a day(used to be 12) and requires it for physical therapy which she never needed in the past.
On a positive note, Alyssa's cognitive abilities continue to develope normally!! Her speech is improved so much. Her speech teacher just completed an assessment and Alyssa scored in the average range for a typical four year old. Yeah, we are so proud of how determined Alyssa is despite her many obstacles. It is music to our ears to hear her speak so clearly now in complete sentences!! She continues to need help with some articulation but overall she is quite a chatter box!! She is currently out of school but hopefully with Spring upon us, she will be able to return!! Her peers in her classroom are so wonderful and accept her fully!!
Ryan has had a decent winter. He has had a few viruses but has bounced back from them. He continues to have days he just wants to sleep and requires his bi-pap more. These days make me nervous and I get worried he is giving up. I know that someday, he is going to decide he has had enough. We try not to dwell on this but it is difficult when all the doctors around are always so surprised everytime he survives another winter.
We are so blessed to have such wonderful nurses who take such great care of Ryan. I believe the love he receives is what keeps him going!!
Bill finally let me bring him to get a big boy haircut(he usually shaves Ryan's hair). We brought him to a salon in town and they were so accomodating. Ryan looks so handsome with his new haircut.(I don't have a picture yet but will get one soon.) My eight year old big boy. Yes, my Ryan turned eight years old in March. I used to have a difficult time around his birthdays because I felt sad that he hasn't experienced "normal" eight year old things. Recently a friend told me that Ryan was going to be Ryan from the day he was born and no one else. She is absolutely right!
Ryan is certainly loved by his entire family. Alyssa gets a little bossy as she tells him to "Get out of her way" when she is tooling around in her power chair, but she is always the first to go and check on him to say Good night or Good morning!!!!
Katie is doing fabulous and also celebrated a birthday. She is 10 years old. Where does the time go. She has been enjoying watching her old baby videos lately. I guess you don't realize how time flies until you watch what you looked like ten years ago. Love those huge glasses!!!
We hope that you are all looking forward to Spring and new beginnings!!! We are sending you all hugs and kisses and thank you for you continuing support for our very special family.
God Bless
Read Journal History
Hospital Information: Duke University Medical Center
Erwin Road
Durham, NC 27707
919-489-2402
Links: http://www.krabbes.net Krabbe Information
http://www.krabbes.com Krabbe Kids Page
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