I didn't have school today because we had conferences on Wednesday night and all day Thursday. Ali and I arrived at the hospital around 10:30 a.m. and Brady was without his breathing tube. They took it off at 2:00 a.m. Ali and I left the hospital around 5:30 p.m. and the tube was still off, so he was at 15.5 hours and counting. :)
Ali tried to feed him around noon but he was completely zonked. We went to grab some lunch and when we came back he was awake for the next 5 hours or so. Ali was able to feed him about 5 ml. Ali and I took turns holding him and talking to him with his eyes wide open.
Brady will go through swallow testing on Monday. They will x-ray him as he is being fed to make sure the milk is following the proper path to the stomach. Brady has gagged a couple of times and also spit up while eating. There's a possibility that a small amount of milk is getting into his lungs. If that continues to happen there is a chance for complications like pneumonia. We'll know more after the results on Monday.
The OT came around 3:00 and that was the first time I was there when Brady went through therapy. She did a lot of movement of his limbs to work on joints and muscle tone. She checked reflexes in his abdomen. She massaged the jaw, mouth and tongue to help him become a better eater.
I asked her to explain to me what would be considered abnormal or concerning during her treatment of Brady. Stiff and rigid muscles, known as hypertonia, and exaggerated reflexes are signs of spasticity, a symptom of cerebral palsy. It's hard to tell if Brady muscles are too stiff or if has exaggerated reflexes right now. Her therapy is designed to be proactive and preventative.
Ankle clonus is also a sign of cerebral palsy. She performed tests on him to check for ankle clonus. She took his foot and bent it backwards, toes toward his shin (dorsiflexion). She then released the foot and observed the ankle reaction. If ankle clonus is present the foot will repeat the motion on its own, at a spastic rate. Ankle clonus can be measured by the length of time it occurs, then classified by the duration of activity; none, mild, moderate, or severe. For instance, a mild rating would be less than 3 seconds, moderate between 3 and 10 seconds, and severe more than 10 seconds. A "normal" baby would have no movement at all. Brady's movement was less than 3 seconds. His foot moved about 3 times very quickly. Our OT told us that it was 5 times yesterday, so it seems to be improving. She said that in severe cases a foot will move 25 times or more and will not improve through treatment.
The fact that Brady tucks his thumb into his hand is also concerning. There is something called thumb-in-palm deformity in cerebral palsy. Since the thumb is the most complex finger, it takes a very coordinated effort by the brain to move it. Brady is wearing splints to keep the thumb from being rigid and tucked into his palm when he makes a fist. The splints seem to be working well over time.
The OT told us that she will do a comprehensive evaluation at Brady's four month check up. We'll have a much better idea then about any long-term concerns. We've been told that Minnesota has a fantastic program for preventative care for people like Brady. Even after we are discharged to the hospital, therapists will come to our house to work with Brady and also teach us techniques to use. The fact that they're already doing daily treatments on him is such a blessing for us.
Ali also had a big day today. Her wound seems to be healing well from the inside. We went to a doctor today and she stapled Ali's opening. We're hoping that the third time's the charm. :)
We're keeping our fingers crossed that Brady's tube is still off when we visit tomorrow. We're also hoping that Ali's wound heals quickly and completely. Please continue to keep both of them in your thoughts and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
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