Hello all! I would think by now, life would be easier and slow down a little bit. However, with 3 children under 4 years old I think that might be impossible!!! :-) Little Miss Taylor is growing more and more everyday! Her hair is so beautiful and getting so long. Pretty soon her hair will be long enough to put a pony tail in it!
She continues to have PT and OT weekly and has her good days and bad days. On a good note Taylor is getting much more comfortable tolerating tummy time and vocalizing when she is hungry, wants to be held, or is in any type of pain. Before the only time she would cry out was when she was in pain. When we prop her up on a boppy, she turns her head from side to side looking around the room. Most of the time, Taylor keeps her head locked towards the left, so we really try and get her to turns towards her right.
On a more frustrating note, Taylor continues to have many seizures a day despite the increase in her medication. I have been in contact with her neurologist at Duke and they want to continue with the path she is on now and see what happens. She goes back to Duke on November 25th and hopefully we can get some more answers. We also finally got the results from Taylor's swallow study from July 23rd. It was a bit complicating, as it said Taylor had no swallow reflex. It also said she was at an extremely high risk of aspirating. That really puts us in a uncomfortable situation because as much as we want her to slowly eat by mouth, all it takes is for her to aspirate on her food one time and she could catch phenomena. Her heart might not be able to take that type of stress. Our OT said she would continue to work with oral motor, but would not work with the feeding side of things until she has a swallow reflux.
Meanwhile, we haven't had Speech Therapy in about 6 weeks because our therapist moved and we haven't been able to find anyone else. I am in the process now of trying to find a speech therapist that deals with pediatric swallowing and will feel comfortable working with Taylor and her heart condition. As a mother, I want Taylor to one day eat by mouth again, but I don't want to rush it and put her in further danger. Please pray, that the Lord will guide me to do the right thing and that HIS will, will be done.
Another, concern is the tightness in Taylor's upper body. For so long, Taylor would hardly bend her arms and would sometimes turn them outwards. She has quit doing that, but now keeps them bent and drawn in. It is very hard to straighten her arms unless she is sleeping and she completely relaxed. Jeff and I, along with her nurses stretch her arms really well when she is napping. Every now and then, Taylor raises her hand and our nurses think she has a question. We tell her, "YES, Taylor....you can have anything you want!"
The Cap-C program are currently reviewing Taylor's medical documentation to see if she still requires a Nurses care. They have extended her nursing care until November 16th in order to make a decision. Our Case Worker said she has not found a company that would allow their CNA's to take care of Taylor in her condition. So, if they say Taylor does not rate a nurse, they will have to, by law, provide a company for her. I'm hoping that with her documentation we will not need to put up another fight.
That's about it for now. I hope everyone is having a great October and Flu-Free!!!
Love ya'll!
Tammy
God Bless
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