It's been an interesting morning here at our house. Jackson slept through the night for the first time in 7 days! I really wish he could tell me when he is going to do that so I don't stay up all night waiting for him to wake up :) Jackson's OT came to the home as scheduled to do his therapy, and we talked about the dreaded but now almost unavoidable topic among his therapists... Cerebral Palsey. It's a very broad term for all different kinds of developmental delays and brain injuries. With Jackson being as premature as he was the risk is much greater. Even though he did not have any brain bleeds in the NICU, he still has some "preemie" damage to his brain, and we have always known and expected that. The hardest part is the unknown... Jackson is now 16 months (13 adjusted) and still not sitting on his own. After months of his therapists chalking it up as "prematurity" they are now saying that there is an issue that goes beyond just being a preemie.
We talked about how far Jackson has come... Don't get me wrong he has come SO far! And continues to hit his developmental milestones...just on his OWN time. The good news is that he has not regressed at all, and he is doing everything in "order." The therapists are concerned with his muscle tone. Most preemies have both high and low tone, especially in their arms, legs, and trunk from gravity working against them while they are still developing in the NICU. Over time with therapy these things start to resolve and muscles become more "trained." In Jackson's case the tone issues have shown little progress, epically in his trunk (abdomen). Our therapist has suggested that we talk with our doctor to see if we need to get a Neurologist's Opinion.
Because Jackson's background is a little more complex than most preemies there is a lot to take in to consideration when it comes to his development. He layed in a hospital bed for 6 months, with wires and tubes all around him. He was poked and prodded, nearly every touch was a "bad" touch. Then he came home with all of the wires, and tubes, and machines, and very sick lungs. He was on such a high dose of steroids for such a long time that his bone density and muscles were weakening with every dose.. Over time the dose was weaned, and he has now been steroid free for 6 months, although the Doctors said it could take up to a year for them to be completely out of his system. This is why the doctors do not seem to be concerned with his development at the time.
All I know is that no matter what Nick and I will love this little boy with everything that we have. His smile lights up the universe! Jackson is such a miracle, and is teaching us new things every day. I have mastered the art of how to stay awake for 2, 3, 4 days straight without even thinking about it. Nick and I have learned to love in a way unimaginable, and how to embrace the things that are out of our control. In Christ all things are possible. I will live by Faith and not by sight.
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