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Thursday, August 25, 2005 11:35 PM MST
Lauren has been on the soy pill for almost 4 weeks. I haven’t noticed any dramatic changes like some of the other families but I did think I was noticing some minor changes. So I asked Some of Lauren’s therapists if they had noticed anything. Their responses were fairly consistent with each other and were similar to what I had noticed. We were all in agreement that Lauren had more energy. She had increased awareness of her surroundings and of what we were trying to get her to do. With this increased awareness, she found more creative ways to avoid doing what we want her to do. For example, when she sees us coming with the hearing aids she puts her fingers in her ears or if we ask her if she has to go potty, she goes and gets a diaper out of the cabinet and starts pulling down her training pants. We are pleased with these behaviors because we feel like this is a more typical response. Lauren has become more independent. If she wants something, she will find a way to reach it and she is becoming much more verbal about her wants, even demanding at times (we are speculating that she picked this up from her brother).
The Picture People (a company we have been using since Lauren was born) opened their store up ½ an hour early so she could get her picture taken before the other kids arrived. We were very excited to get her picture taken. It had almost been a year. See her picture by clicking here.
Thanks for continuing to follow her story. We also greatly appreciate your prayers and thoughts of our family. May God bless you.
Friday, August 5, 2005 07:44 AM MST
Lauren and Nathan had a great time with their grandparents and we had a great time in Sedona. Lauren has been doing really well the past 2 weeks. She did get another cold and she fought it off rather quickly this time. We did end up putting her on antibiotics again to prevent ear infections.
Lauren has started wearing her hearing aids about 80% of the time. YEAH! We are having to watch her every second. She still likes to take them out of her ears and put them in her mouth. I haven’t noticed any improvement with the hearing aids but she has added a few new phrases to her vocabulary recently. For example, “What’s that” and “I understand”.
We have started working on potty training again. This is the first time I have used real training pants instead of pull ups. She occasionally has a day where she is having 4-5 accidents but over all she is down to 2-3 accidents. I am primarily just timing her and putting her on the potty. She is very rareley telling me when she has to go potty but when she has told me, she has said ”Go potty get bean”. This is the first time I have felt like she is understanding cause and affect.
In case any of you don’t know, Lauren’s diet has primarily consisted of scrambled eggs, cheese, pasta and pediasure. Lauren has been getting feeding therapy since January and she hasn’t added anything to her diet except junk food. I spoke to another parent this week that told me of a group of parents that had seen the disease progression slowed by the kids being on really healthy diets. This past week Mommy got a lot stricter with Lauren trying new things. I am tapering her off of the pediasure and have taken her off of all junk food (with the exception that she gets 3 jellybeans every time she goes potty). Lauren has found out she likes strawberries, watermelon, cantaloupe, apple, turkey and chicken lunchmeat. And has been tolerating carrots and potatoes.
Lauren has started on the Soy pill. I haven’t seen any improvement with Lauren since starting the pill that I am sure is related to the pill. She has made some improvement recently but a lot of those things started before starting on the pill. The doctor predicted it would take 3 weeks to start to notice anything. A lot of the families have seen improvement sooner than that but their children were more progressed than Lauren. Please pray that this pill does help Lauren and all the other kids starting on the pill. Unfortunately it is the only thing that is out there right now to possibly help a lot of these kids. Transplant was not an option for them due to age and disease progression. We thank you for your continued prayers for Lauren. God Bless.
Carrie
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