Monday, April 14, 2008

More bumps & bruises....

Mylee had a very busy morning...we had two therapy sessions bright and early today. This was her first visit back with her physical therapist in several weeks due to the transition back to St. Joseph's. Mylee did very well and I can tell she really loves her therapist! We did a lot of walking with the grocery cart at therapy, her physical therapist has great hope that Mylee could be walking by her 2nd Birthday! I pray everyday!! I am also really hoping we can eat by then too...I can't imagine not being able to have birthday cake on your birthday!!

We also met a speech therapist from Children's Hospital who is one of the therapist to adminster the vital stimulation that Mylee needs. She said Mylee had a beautiful name it sounded familiar to her...I am really hoping since we were introduced to her that she will go back to her office and help speed up our case. We are currently on a waiting list. It makes me really sad to know so many children have aspiration and dysphagia issues....This whole journey in this portion of our life has really opened our eyes to those many people (mainly children) who suffer daily with rare illnesses & diseases no one should ever have to experience! If you are interested browse through Mylee's caringbridge site and read some stories of other children (and families of those children) who have signed Mylee's guestbook. These children are amazing and the bravest souls I have ever met! Mylee is one of many, many children who suffer daily.... despite not being able to eat each day, walk upright, communicate with her voice, and constant falling due to being unbalanced... our sweet baby continues to fight and live pain free with a smile on her face... She is our hero!!

We also a bit of a scare this afternoon with Mylee's feeding tube. We noticed it was a little loose so we checked the level in the balloon, sure enough it was only filled to 1ML of water - it should be around 5 or 6ML. Dave helped me fill it back up this morning and we went off on our way to therapy. Well I noticed it was a little loose again when we got home while I was changing Mylee's diaper. I went ahead and checked the levels (mind you I am by myself during the day) and sure enough it was back down to 1ML again! I called her surgeons office and spoke with a medical assistant who told me Mylee probably had a slow leak...she guided me through changing out the Mickey button...I was really nervous because I am by myself...I sucked it up and changed it without problems...Mylee is sure a trooper!


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