AJ Taylor's Journey

Update on Alexa

Okay so this might be long.
Alexa started with very intermittant leg pains many months back. I thought that they were just growing pains so I let it go. Then about OCT. things became very increased. She was asking for a cart to ride in everytime we went to a store and constantly saying that her Right leg hurt. I felt her muscles and nothing seemed "wrong". So she ended up with one of her cough fits again and we were at the pediatrician since we started her steroid and I brought up the leg pain. She said that "growing pains" are just a myth and to prove it Alexa had not grown. SHe wanted Labs done and x rays but told me to wait until after the steroids were out of her system. She also told me to let Dr. Dias know what is going on just incase he thought he would want other testing.
While we waited the week for the steroid to get out of her system Alexa went down hill fast. Dr. Dias had initially told me to let him know when the labs and x rays were neg. and he would want an MRI. Well in that week Alexa's leg started "going to sleep" a lot and then it was both legs and then her hands felt funny and then the headaches started and she started sleeping a lot. I emailed Dr. Dias and he said where is my MRI. I told him it was not ordered yet since I did not have the test results and he immediatly started his office on getting her MRI. SHe needed to be sedated so it took FOREVER to get that done.
The MRI was not done until Dec. The MRI was not as obvious as we had hoped. By this time Alexa was sleeping most of the day after her 1/2 day kindergarden was over. She was requesting to go to bed about 630pm and she was afraid to sleep by herself because "something" was waking her up. Well I found out quickly she was gasping in her sleep and it would wake us both up. So she is not sleeping well. Dr. Dias ordered more testing to be sure that she needs another decompression. Alexa did another swallow test, a sleep study and eye testing.
In the mean time before the MRI Alexa had another episode of her coughing with a fever and the pediatrician was afraid that anesthesia would turn her away so they immediatly sent her to pulmonary in Hershey. Dr. Ganesh did a ton of testing on her and we found that Alexa had no HIB titer and something else was lacking. He sent us to the pediatrician for a HIB booster and Pneumovax. Also he has now confirmed that Alexa has Borderline Cystic Fibrosis. We are now awaiting a lot of test results to see what systems are involved. At this point things are becoming a little overwhelming!!!! All I wanted was Alexa to feel better and get back to her normal self!!! So now after all that...All the testing is over...I am waiting for Dr. Dias to decide if he is going to decompress Alexa soon and hope and pray that makes her back to her active self. Then I am waiting for Alexa's testing results from Dr. Ganesh. Then AJ and I have to be tested for the CF mutations that Alexa has.
~~~~~~~~~~Happy 2010~~~~~~~~~

posted by Carey Taylor @ 8:27 PM