Hope

This week has been busy and Blake and Derek have caused their share of trouble but I don’t have another crazy story to tell. Life is certainly busy and it is hard to get much done other than taking care of the basics (and even some of the basics get neglected) but the older the babies get the more it seems like we might survive.

Last week I wrote about how we learned that it was very likely that Brandon was going to have some trouble with the left side of his body. Amy was at the appointment where they discussed the possibility and it was extra hard for her. The doctors used phrases like, “It’s seems to be really mild so we don’t want you to worry, he will probably be able to walk.” They talk about how many children with disabilities don’t let it slow them down. The talked about how hard it is for some parents when their children need to be picked up by the special education bus while all of the other kids in the neighborhood are going to a different school. Obviously this is all very overwhelming when an hour before you didn’t know for sure that anything was wrong. To make things even worse they talked about how it is hard at first because many parents are in different stages of acceptance and one may be in denial while the other one is depressed.

This certainly made it hard for me to be my usual optimistic self, even if so far I had always been right. Luckily, this week ,we had a good experience when we talked with one of the occupational therapists that has worked with Brandon for a long time. She gave us a lot of reassuring information. She had seen Brandon get through a lot of things much more difficult than this. Although the neurologist gave us a wide range of possible outcomes, she let us know that she felt really good about Brandon and the possibility of it being so mild that only a neurologist could tell there was a problem. We have many things that we work on with Brandon and we have a specialist coming this week to give us more information. Brandon also seems to be making really good progress. Although, it is pretty clear that his left side is not developing as fast as the right it also seems to change depending on the circumstance. We have seen several times when he uses his left hand almost as well as his right. This gives me a lot of hope.
The experience with the neurologist reminds me of an experience that Amy and I had a short time after the babies were born. A nurse, whom we now secretly and affectionately refer to as “Crazy” talked with us about some of the choices we might have to make. She had good intentions and I can see why she thought it might be good for us to hear what she had to say. She saw the condition Brandon was in and knew that it was likely that we would have many more problems than we actually had. She began to talk to us about quality of life and how many parents struggle with the decision to continue to extend the life of a child who has severe problems. She was very nice and stressed that this is no wrong or right answer but she also hinted that we should think about it. Of course this was a little overwhelming. We were just hoping that Brandon would make it and we didn’t even fully comprehend all of the problems that could arise with such a premature baby. However, we were blessed incredibly and we never had to even consider a decision similar to the one this nurse was describing. It was a situation where a nurse was anxious to help us and give us information but it might have been better to wait and see what problems we actually were going to face before talking about the possibilities. Luckily we detected a part of this nurse’s personality that earned her the nickname, so we were able to take this conversation well

The hospital called and they rescheduled Brandon’s surgery for Wednesday the 16th. This is a little harder for me than on a Friday. In order to have all of the tests done it is likely he will need to stay longer o this may mean more time off work. On one hand we are anxious to get everything taken care of but on the other hand we are really nervous to send Brandon back in the hospital. They have warned us that because he will need to be sedated and on a ventilator longer to complete all of the tests that it may take longer for him to recover. However one time is still better than two.