Infustion day #3. I find it odd that every single time we have went to Children's hospital...it is raining! We've learned our lesson and leave in plenty of time! Although the sick feeling I have the night before and the day of are still haunting me every single time....things are getting into more of a routine. I think that I will have that awful... feeling everytime because she is my baby...and I so bad wish this was me instead of her. She is such a trooper though! It is always a VERY long day for all of us. She never will sleep either :( This time it took forever to get ther meds going..we were there for about 2 hours before they started. So keeping a newly active 20 month old occupied for 7 hours is nearly impossible. We are running out of ideas! We do movies, stickers, she is on my lap then Wade's then back in the crib. We bring food, drinks, and plenty of snacks which falls in the food category I guess!..but even she is bored with that. Oh well, we will have to get creative I suppose! Ideas are welcome! She did such a GREAT job getting the IV in...not a single tear! Amazing. And the "stuff" that goes along with the IV doesn't even phase her. It is becoming normal to her. We talked to Dr. Stockton about her improvement...and how great she is doing and we asked if he thinks it is from the Myozyme. His reply..."we can't be sure but unfortunatley it is probably not from the drug this early on. But there always is a chance it could be" Since there is not much research because of how new the drug is and every child is different...that is the answer that we have to accept. We are OK with it...our theory is...it doesn't matter if it is the therapy or the drug making her stronger...the point is...SHE IS GETTING STRONGER! We will continue to do both! And you are looking at two happy and proud parents! WOW! When I step back and look at her improvement in the last 8 weeks..it amazes me. She is so determined! and I love it! I again want to thank everyone for your thoughts, and prayers and all the caring comments! It really helps us to know that we have one of the strongest support systems around! And there is no doubt we need it at this time! Keep the good thoughts coming our way!
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