Planning
October 16, 2012
His last 2 days have been wonderful. They got him off of his oxygen and he is doing really well with out it. The genetic test came back with normal results. It frustrates the doctor mostly because he would like to be able to have a "diagnosis" to describe what is going on with his little body. So, we are now just settled to work on what we know and any other problems that come up we will deal with individually.
What we do know is that there are nerves that are not developed and hopefully there is a big YET attached to that. His eye did not open and close and birth and he is now able to close it and blink as well. Occasionally when he is upset or mad the one eye will be closed and the other wide open. The control is not there. It is kind of funny looking. His swallow, obviously is not working. He is not able to close off his airway. That is why the gtube and hopefully that can develop over time if not he still can function a normal life with his gtube.
In addition, part of his vocal cords are paralyzed. That is why his cry is so soft. You hardly know he is crying. That part is sad that he can't express himself. There are surgeries that can help him. If it does not develop it may be difficult to form speech. A hurdle down the road.
Another current hard one is when he falls in a deep sleep since there is not a lot of muscle control in the trachea area, for lack of a better word, we believe it sort of collapses. Then he goes into what they call a "dsat", or lack of oxygen. His heart rate goes down and he changes colors. It is scary. But when he comes home they will send us with really loud monitors and we are taking a infant cpr class next week. So, if everything continues to go as it is now, we will be able to possibly bring him home a week from Saturday.
We have in home health that will set us up to take care of his issues here at home. We have therapist who will continue to help us and many doctors in different specialties as well. I feel this is going to be a long road for us. Ryan calls it our "new normal." I won't be able to leave our home much since one he requires so much care and I am not suppose to travel without another adult in the car that would be able to help him if he has any problems while traveling. He still requires a lot of clearing out of his secretions (basically the saliva we constantly swallow in our mouths constantly he cannot. But he is slowly learning how to cough and sneeze to do so). It definitely is going to change our lives. But what we do have is a beautiful and healthy (except for his issues of course:) baby boy who has an incredible spirit about him. He is the most patient thing. And oh, so sweet.
I look forward to all of you being able to meet him, which may be a while for some. We have to try extra hard to keep him healthy where the common cold may put him back in the hospital. I am sure Ryan and I will be tag teaming a lot for every little common thing in our life. Please continue to keep us in your prayers. The support you have all given us has been incredible! More than I have ever expected or hoped. So Thank you. You make us feel like we can handle this. We don't feel alone and we have a lot of hope. This may be a challenge for our family, but also a great growing opportunity. Again thank you. We are so grateful for the wonderful support group we have around us. We have the very best of family and friends. I truly mean that. It really has meant so much to me. THANK YOU ALL!
This is a small video of him sleeping. I didn't want the flash to wake him up. He just looked so cute. It is always so nice to see him sleeping peacefully and breathing normal.
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