Thursday, July 26, 2012

July 26, 2012- Almost 16 months

We have been having a great summer! It has been so wonderful to be home with Sam and Gwen. I have seen such a change in Sam's abilities this summer. Last week she started crawling. When she wants to get from a crawling position to a sitting position and her right leg doesn't cooperate, she will actually take and pull her toes so that her foot will go the right way. It is really sweet. We saw the specialist for the stiffness in her legs on Monday. She wanted her to get braces that she will eventually need to wear almost all the time and Botox injections in her hamstrings and in her lower legs. She had an opening for Wednesday so we went ahead and brought her back down yesterday. They had to put her to sleep which is always hard on her. On the way home, driving down the highway she got sick in the car. Other than that she seems to be doing quite well since she has over 40 pricks all over her legs. She is still crawling everywhere. I really hope that with these new treatments she will be up and walking in no time! She is such a sweet girl. She hugs my neck when I get her everyday after her nap and makes the sweetest noise of contentment. Gwen and Sam are as close as ever. Gwen is like a second mother to her. She is the best big sister! I am so very blessed. When I am feeling down from time to time I just remember just where God has brought us. My mood changes instantly because my heart just fills with gratitude. Just in case there is a parent of another child who might be going through a similar situation, I thought I would post photos of what her legs looked like after the injections. I didn't expect so many injection sites but overall it seems to be working just a day out from the procedure. All of this gets scary at times but I have come to realize that we are not alone.

Wednesday, July 4, 2012

July 4, 2012

I know it has been a very long time... I am sorry. So many people have asked when I was going to post again. I have a hard time finding time for anything these days. I post on Facebook often because I can do that quickly. My blogs tend to take a lot longer. Well Sam is now 15 months. Can you believe it? So now that we have hit a year, we are starting to see more of a divide in Sam's abilities and other children around her age. She is still not crawling, however she really wants to. You can't put her on the floor without her instantly going to a crawling position but her legs just don't like to cooperate. Actually last night around 3 in the morning she must of woke up, sat up and got into that position. The problem is that she gets stuck so when I woke up from her crying I found her stuck in that position. It bothered me because I was unsure of how long she had been there since I am not the lightest sleeper. She is making some progress on standing for very short times (close to a minute). She still gets in her stander several times a day to strengthen her legs. She loves it. Her favorite show is Yo Gabba Gabba. She gets all excited when it comes on. She loves bubbles, riding in the wagon, swinging and doing anything with Gwen. We are going to see a specialist for the increased tone in her legs at the end of the month. I hope that she will be able to do something that will help Sam in some way. I know she gets really frustrated. Here are some photos. Thanks so much for all your support and prayers. It was about a month ago when I realized that I had so many pray requests that I was forgetting to pray for Sam's legs and head daily. I pray for my children daily but I was not praying specifically for their needs. As always I give God the glory for all of the accomplishments for Sam. I remind myself daily, "They said she could be on a feeding tube her whole life." So blessed God has brought her so far. Have a Happy 4th Everyone!