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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
Tuesday, May 6, 2008 11:52 AM CDT Hi,
Wow, I can't believe it is already May. I apologize for taking such a long break from here. Time goes by so quickly around here!!!
I am not sure where to begin, so I will start with Ryan. He continues to have seizures that we are trying to control. We have been working with both Duke and our nuerologist up here. Together they decided to put him on a seizure drug called lamictal. Apparently many children down at Duke have used this drug with much success. It is a drug however with a significant side effect which can be quite dangerous. We have had to go very slowly in administering this drug. We can only go up a few miligrams every two weeks. It is a very slow process. So far no side effects. I am hoping that once it is therapuetic than we can take away another of Ryan's seizure meds. He is currently on four different ones. He has also been extremely "juicy" lately. The nurses have days they feel they just can't keep up with his secretions. We have added pulmocide and duo nebs to his sick plan. The nurses in the past have always felt that Ryan is extra "juicy" around this time of year. We always want to blame his disease yet maybe like the rest of us, he has allergies!! Once he is off his current anti biotic, I want to try an allergy med just to see. If it works great, and if not at least I can cross one thing out. We have tried to die his formula to see if his stomach wrap as come undone and so far the secretions have not shown any color to them. It scares me to think that all of his secretions are coming from his lungs. He does try at times to cough them up his self.
On a positive note, Ryan seems to be back more to his normal alert self. We are getting more of his "smiles" and sighs!! These are our gifts from him each and every time!!
Now onto my Alyssa. She has been making so many strides the last few months. I think the most important is that she is breathing on her own in the morning for an hour to two hours!! She then takes a break and is able to breath again in the afternoon for another hour and a half. Some days she averages four hours total off her vent!! This is so encouraging to us. While she is on her vent, we are able to keep her trach cuff deflated. This allows her to move air above her vocal cords. She talks all day long!! I really don't know where she gets this from!!(HeeHee). She is her mother's daughter. We are working on small phrases, for example "I want, I see, I hear". She just loves to say "NO" and "Ouch" lately!! She also is starting to sing. Her favorites are the I love you song from Barney and The Itsy Bitsy Spider! This is exciting because in order to sing she must breath out of her mouth and hold a note!!! Alyssa is difficult to understand at times but she certainly tries hard to communicate her wants and needs as well as her dislikes. She has grown fond of Katie's High School Musical and Hannah Montanna CD's. She no longer wants her own only her big sisters. Together they "rock out". It is quite hilarious to watch my two girls in action!!
Alyssa has given us some scares as well over the last couple of months. We had to do four emergency trach changes!! One of these times, Alyssa passed out and was purple. I had a cast on my arm and was helpless. Bill had to take care of her. Katie called 911 and I sat there screaming and crying!! I can't tell you how scary this was to see her like this. It brought so many horrible feelings back to the past. Bill was able to change out her trach and bag her. She revived even before the ambulance came. Her trach was completely plugged off. After this incidence any sign of plugging we would change it. She had plugged off three more times but we were able to intervene before she passed out. Alyssa had a broncosopy done at Yale and she had to have some internal granulomas removed. The doctor also felt she had outgrown her trach which could have caused all of the plugging. We upsized her trach and haven't had a problem since!!! Thank goodness!!
Alyssa is sooo smart. She is counting to ten. It is hard to understand 4,5,6 but you can hear 7,8, 9, and 10!!! She is also able to identify all the letters of the alphabet as well as say them!! Her little mind is like a sponge. She is learning so much!!!!
Unfortunately, we have brought her to the orthopedic and Alyssa's hips are popping out. She also has knocked knees and her ankle cords are tightening up. Alyssa will have to undergo a huge operation to fix all of these problems if we have any hope of her standing or walking. It is scary to think of putting her out for at least six hours and having to put her in a body cast for eight weeks. I am going to get second and third opinions before I do anything. We are heading down to Duke this Summer and I will see an orthopedic down there as well.
Katie is doing fabulous. She is turning into such a young lady!! She is continueing tennis and is always busy with friends and family. Alyssa adores her big sister and yells for her the minute she walks off the bus into the house!!!
We are so blessed with these three children!! I thank God everyday for the opportunity to be their Moms. They all have taught me so much about life and love!!
To all you wonderful Moms out there, Happy Mother's Day!!
God Bless
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