I realize that it has been a while since we put pictures of our little angel on our blog, so here is your chance to catch up on how beautiful she looks. I think her hair is out of control and needs to be shaved off, but I am in the minority on this one!
Lately we have been on a kick of taking her picture while she is sleeping. You will see how cute she is and how hard it is for us to resist these special moments.
First, I would like to explain the next picture...Emily has a tendancy to keep her feet in a flexed position. She continually has her feet pointed out. This is a result of her spasicity and in order to help her control her muscles we have to help release some of the tension. The braces are to keep her feet in a relaxed position. The funny thing is that she is so strong that she can tighten her feet and break the bond held by the velcro. This means that we have to keep her calm (which is not easy because she doesn't like the braces) or devise a way for her to not be able to push her feet straight. So when she has her braces on, she gets put in her chair with her feet against the wall to hold her in place. She is strong enough to push away from the wall, but the longer she can keep them on without getting out of them, the better off she will be.
In one of the last posts I had mentioned that Emily was having some digestive issues. The medications are not working as well as we had hoped and we don't know what the future holds. She had been doing better, sleeping later and not gagging and dry heaving as often. In the last 24 hours we experienced a back slide. She woke up at 4:00 am dry heaving and gagging. This continued for about an hour. Just as I got comfortable in bed, I would have to jump up and put her on her side so she could spit out the saliva and breathe. So much fun!!
I realize that we paint an awful picture of life with Emily and I want to let you know that for 23 hours a day, she is a joy to be around and she laughs and smiles and makes it a joy to be a parent! She is a blessing and I don't know what life would be like without her. There are just times that are hard to be a parent. This goes for all parents, I'm sure, but I don't know the struggles of other parents, only the struggles that we go through.
Here are some pictures of Emily at her best. HAHA
Below is an example of why I think it would be better to shave her head. She doesn't have to be completely bald, just cut it down to about 1/4 inch. She may look like a boy, but we won't have to deal with all the snarls and tangles that go with longer hair. We can always just dress her in pink and people will know she is a girl! I know this will never happen and all the women who read this blog will disagree with me, but I am sure that there will be some men that will agree with me! I will love her either way!
If you have any questions that we don't answer in these blogs, please feel free to ask them in a comment. We live with Emily every day and it is hard to tell you everything that happens and we know that we don't explain everything perfectly. We want you to understand and welcome questions to help you understand why we do things and how Emily "really" is.
Thanks for all your continued prayers and support.