We get a lot of questions about Isaac and how he is doing, and some of them seem to come up fairly often. Probably the most common question is just, "How is Isaac doing?" which can sometimes be hard to answer. I can say, "Great!" because, he has improved so much and we are excited about that, but there are a lot of things he still can't do, and I don't want to lead people to believe that he is up and doing all the things he used to. I usually try to figure out what the last thing is that they heard and go from there. At the moment, I feel like he is doing really well! His neck and arm muscles are visibly stronger and his abdominal muscles are improving also. He is learning how to use what he has to compensate for what he doesn't.
Another frequent question is, "Will he walk again?" This is a difficult thing to answer. We don't really know what the future holds for him, but because the spinal cord does not regrow, and he has had a significant injury that is high up on his spine, the chances of him ever walking again on his own are extremely slim. One of the rehabilitation doctors we saw said he had never seen someone walk after an injury that high up. In addition to that, Isaac still has not been able to make his legs move. He has spasms in his legs, but they are reflexive and not caused by impulses traveling from the brain to the legs. It is a local response to stimuli, and it is normal for people who are paralyzed to have them.
They say that after an injury, 90% of whatever they get back will come back in the first 6 months. It is hard to believe, but we are only a little over a month from that six month mark. Of course, some things will come back after that, but there is very little chance that he would go from having no movement in his legs to walking.
Where we do have hope, is in medical technology. There is a rehab group that did help a local woman walk again after she was in a paralyzing accident. They were able to bypass her spinal injury and send the signal to her legs. These kind of things are encouraging. We don't know yet how or if this kind of technology will work for Isaac, but the fact that it is possible and even happening in our own community is exciting! In addition, there has been a lot of research that has gone into using stem cells to regrow spinal cord tissue. Although it is still a work in progress, there is some hope that this type of technology could help Isaac someday. He is young and we don't know where these technological developments will lead or what new discoveries and experiments will lead in his lifetime. If I think of all the things that have changed in the last 30 years since I was born, it gives a lot of hope for what Isaac's adult life may look like.
Another question we have gotten is about what Isaac eats. Right now, Isaac gets three "meals" a day and a continuous feed at night through a G-tube that goes directly into his stomach. Yes, this means he has a tube sticking out of his abdomen. It has a little port, called a "button," so we can remove the tubing and he is not stuck to tubes continuously. He did have swallow studies at the hospital and was cleared to eat all solids and drink all liquids, but he hasn't had much interest in eating. We suspect that part of this is because he doesn't taste or smell the same way he used to be able to. His trach bypasses his nose and mouth so those senses are somewhat dulled. Food seems to be less interesting to him than it once was. That being said, he does love apple juice! It is his beverage of choice, and he drinks it regularly. Occasionally, he does eat food. He likes all the good stuff like chocolate and oreo cookies! Even if he does eat, it is usually limited amounts. He has surprised us a few times and eaten enough to consider it a meal, but that is the exception rather than the rule for him. For the most part, this type of feeding works well for Isaac, but we do have some issues with him throwing up. So far, we haven't been able to figure out what causes it, and it has become fairly routine. He is on antacids to try to prevent reflux and hopefully keep it from damaging his throat. One of the good things is that he hasn't had a problem with aspirating fluids including the formula that comes back up. Using a G-tube isn't ideal, but he is gaining weight and growing normally, so he is getting the nutrition he needs.
Isaac is a happy boy. We are so glad to have him! If anyone can get through this with a smile, he can. He is working hard with his therapists and improving everyday. Thank you all for your thoughts, prayers and questions. We would love to answer any others that you have! Feel free to ask anything that you have been wondering or are curious about.
No comments:
Post a Comment