Thank you!

Thank you for your prayers! Alex is eating her solid baby food now and she is getting much better with her sippy cup. The 12 hour feeds overnight are not working as well as we would like. Alex has recently started to wake before the 12 hour mark AND being fed up to her wake time is making her not want breakfast. I spoke to the G.I. doctor today and we are slowly going to wean her down from the 12 hour night feedings down to 10 or 9 hours. We have been able to keep the feeding tube in Alex for 3 days now without her pulling the tube out! However...this is a lot of work and not something that will be best long term. Keeping the no-no's on means Alex can not bend her elbows which means she can not play with her toys or practice crawling. When the no-no's are off we have to be on top of her watching her every move which is restricting to Alex and to us. I am afraid this will affect her development especially since she already has low muscle tone in her upper body that we see a P.T. for once a week. I was really sad today as my friend Amy came over with her 1 year old son Isaiah and Alex really wanted to play with Isaiah but could not because the feeding tube is too tempting for small children not to grab at and pull. I am wondering if Alex not being able to be as active as she normally would be is decreasing her appetite and a result she is not as hungry as she would be during the day if she had the freedom just to be herself. I spoke to an RN from CHOP Home Care and she said that if Alex is getting enough food and drink during the day we can pull the tube in the morning and put it back in at night. She said if we do that we will have to contact the G.I. doc and have him re-write the feeding order because we will then need to put in a new tube once a week. Right now the tube we have is to last a month before we need to replace it with a new tube. Tonight we are increasing the amount of formula and decreasing the feeding time to 11 hours. We will see how Alex tolerates that change. If she does we will go to 10 hours at an even higher dose tomorrow night and then see if we want to go to 9 hours. 9 hours is the least amount of time we can do because the dose we have to use for that time frame is the highest we can use during the night feed. We will see what happens. Please pray for wisdom and discernment as well as favor. Please also pray that Alex would eat and drink a lot on her own during the day with or without the tube and that the feeding tube will be a very temporary (although needed) part of her life.

We are appreciate you and your prayers! It is neat to see God answer the prayers you pray along with us and it is comforting to know that when we are out of words and don't know what to say you are praying on our behalf! We love you and appreciate you. Thank you, thank you, thank you! Oh, and I'm sad to say that Amy and I did not think to take any pictures today! Arg!!! So I don't have any to post from her visit. Maybe next time.