Latest update

This is the latest email from Stacy. We sit together at home and write these are her computer. It's hard sometimes sitting there with her while she writes these though things. So we do it together, to help each other. This was written on Saturday.

12/09/06

Merry Christmas everyone! Well, I am sorry that I haven’t updated people in a while. This has been a very hard week. We have had appointments almost every single day and we are exhausted. I guess I will start with our Neurology appointment. It really didn’t go so well and I will tell you that I came home very frustrated and upset. Basically the neurologist didn’t want to do the muscle biopsy right now. He wanted to wait and see what happens. I was floored! Basically he said that we should wait to see if her organs start failing or if she starts regressing with her skills and then we could do it. I told him that her other 5 doctor’s/specialists said that it needs to be done because they are running out of options and she fits that category. So he gave me the name of the specialist that would evaluate her and do her muscle biopsy and told me to talk to her pediatrician about it. When I got home I talked to Jim about it because I was so confused. I didn’t know if we should do it or just wait for a while. We both agreed that we need to know if this is definitely what she has. It was so hard but we had to realize that she can’t voice her opinion and we are her only advocates and we have to do what is best. I think I would feel like a horrible mother if I just said “Ok, Megan, your daddy and I have decided to just wait and see if you are going to get even more worse than you already are before we do anything.” That just seems cruel to me in our situation. Anyways, Megan also had physical therapy that same day. Her therapist said that she seemed to be doing well as far as crawling (except for her left leg that she likes to not cooperate with) and she is actually pulling up on things. One of the problems is that if she does not have shoes on she will sometimes literally stand on her ankles. It is very painful to watch. We have no idea how fragile her bones are because of her weight so it could be possible that she might break a bone very easily. Anyways, we are going to get her some special high top walking shoes to help support her. The other problem that we are having is that now since she is mobile, she likes to keep going. Her body does not like that and gets very worn out. This means she is also burning more calories and she can’t afford that. So, what they are going to do is put her on a limited activity schedule. Basically that means she would only be able to crawl around for about 10 minutes and then she needs to go into her chair and rest for a while. We won’t set specifics until Monday with her therapist though because we were waiting to see what her weight was before we decided exactly what we were going to do. The next day she had occupational therapy and we really didn’t do much. She was way too congested to work with her and her choking is not getting any better. Her therapist wanted to try her on some different textures of stuff that she could chew on but they wouldn’t come off in her mouth. Things like carrots and frozen bagels. Well everything like that has to be approved by her GI doctor and he would not approve for her to try anything right now. He said that her weight is just too bad and she has been so sick (did I tell you that she had strep throat last week?) and we just didn’t need to expose her to anything else, not to mention she has this protein allergy so we have to be extremely careful. That leads us to yesterday when she had her check-up at her pediatrician’s office. Once again we were sitting in the waiting room and saying “Man, she feels a little heavier today, maybe?” We were almost like kids on Christmas morning, so excited to see what was under the tree. We couldn’t wait to see how much she weighed. I forgot that she had four layers of clothes on because it was so cold outside. I should back up just a bit since I haven’t updated anyone in a while. She had gained an ounce here or there over the past few weeks. It wasn’t much but it was something to us. Well yesterday, she had lost four ounces just from Monday. We were devastated! It seems like every time she gains weight she gets sick and loses it all. She is 9 ½ months old and barely 13 pounds. That means now in the 9 ½ months she has been here she has only gained 4 pounds. So her pediatrician has decided to send us to an endocrinologist and another type of doctor, like a developmental pediatrician. He said that she would be going to the muscle biopsy doctor and he did not agree with the neurologist at all. He also took more blood from her yesterday since it had been a while to run some more tests on her. We should have the test results back early next week.  He was not pleased at all at her weight and you could tell that it hurt him almost as much as it hurt us.

 
We need prayers so bad. I have said this before but as the days go by and she doesn’t gain what she needs things are getting very bad. Megan is almost always sick now. I am praying for this fear to be taken away and I know that I have to give it totally up to God. He is the one that has protected her. I had nightmares last night. I kept dreaming of that picture and that she was in the hospital and they wouldn’t let us touch her because she would die. I finally just got up and went downstairs. Please keep praying for Megan and our family. Jim and I just feel totally weak and helpless right now to be honest. It doesn’t take much to not just burst into tears when you see her. What a blessing children are and how very thankful we are that we have three beautiful and amazing children and what a wonderful and blessed life!!! Man, despite all of this, we really have so much to be thankful for. I may have said this before but I really have to keep this in my heart. One day, whether it is here or in heaven, Megan will not have that tube and you won’t be able to see her bones and man if you think she is happy now, just wait!!! If I don’t talk to you guys before Christmas, please have a wonderful Christmas and remember that Jesus is the reason for this season but not just for this time of year, for every day of every year. There is so much emphasis put on buying this and getting the best gift and all that. You know what the best gift is? The fact that Jesus Christ died on the cross for us and paid the ultimate price! What a gift! God Bless you guys and love to you all!!!

Here is edit to this as of yesterday 12/10/06

Quick prayer request for Megan please. This morning at church Megan spit up a bit. It wasn’t a whole lot but it was enough. Well, every since we got home she choked and spit again and she actually threw-up most of her afternoon feeding. Please pray that she will not do this anymore and that it is not a virus. Not only can she not handle that because it hurts her so bad but also because that is more weight we are losing and things can get very dangerous for her. Thanks you guys!

She eventually stopped late yesterday afternoon. I will say this, RSV and the stomach virus are going around, in full effect, down here and she can ill afford to catch either of these. If she continues to vomit today, she will be heading over to the doctor's office. Thank you, 2old2play, for being such a wonderful place for me to be able to share what is going on. Take care and game on.

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JR