Tyson slept really well last night. He had two different chunks of sleeping for three hours each. He usually takes a lot of short little naps but he doesn't seem to get a ton of rest. In the morning his doctors decided to start him on a beta blocker to hopefully help with his blood pressure and heart rate. Anytime they start him on a new medication they are super conservative about the dose because they don't know how they effect these little babies. Tyson usually needs a lot more medication then what they start out at. But hopefully the beta blocker will make a difference.
The rest of the day was very busy. We had visits from lots of different doctor groups along with Social Work, Physical Therapy and Music Therapy. It is amazing to see how well he responds to the music therapy. The musicians will match the guitar to his heart rate and slowly bring it down to try to get Tyson's heart rate to be slower. It is amazing to watch because it usually works and also puts him to sleep.
Tyson is still progressing with physical therapy. We have had a difficult time doing different therapies with him due to all of his storming but we try to do the most important things every day. His Physical Therapist is also very happy with his progress despite storming so much. It is important that we do a lot of range of motion with him along with stretching his joints, feet and hands. We don't want him to be permanently in the position that he is when he is posturing and storming.
We also saw the massage and acupuncturist today. It was amazing to hold him while they worked on him and see him relax with the slightest of massage. There are little things that we can do to help him as well that they showed us. I love that we can have people help him relax and release all of the tension that has built up in his body. The acupuncturist did a lot of acupressure with him (no needles, don't worry). I love having them come and work with him, hopefully they will come by at least to more times this week.
Towards the end of the day we could tell that Tyson was just way too overstimulated. Between 6 and 9 we tried giving him a bath and also decided to crust his diaper rash that he has been having for over a week. We have tried all kinds of creams and treatments but because he has such leaky poop and clenches his butt cheeks so tight all the time it is really hard for it to heal. It was looking so bad that we decided to do what is called crusting after we gave him a bath. Pretty much it is layering powder and hair spray looking stuff to create this barrier between the rash and the poop when it comes out. When you change his diaper it looks really gross because you can only dab at the crusting because you don't want to wipe it off. Twice a day it gets cleaned off pretty good and re-crusted. Hopefully it helps him and he can heal and not be so irritated by the diaper rash any more.
We also started using some lavender lotion today on his feet and also started giving him some omegas to help with his brain development going forward. These were both recommendations of the alternative medical professional here at the hospital. They also get approved by his doctors and staff before use. Hopefully that also helps him in a way to relax and rewire his brain.
During that evening he was so overwhelmed with the bath, crusting, and getting all of his meds that I had a really hard time getting him to fall asleep. He didn't sleep very well or very long that night and he had a lot of really difficult storming episodes. Hopefully the doctors can figure out the right medication management for him soon so we don't have to have such difficult storming episodes.
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