Monday, August 4, 2014

Monday Update

Today Jack had another followup at the clinic. Labs all look good and blood pressure is coming down. (High BP was related to kidneys being damaged. BP lowering, kidneys healing themselves more and more. We are halving the dose of BP medicine.)

His weight is pretty low, only clocking in at 39lbs, this is the thinnest he's ever been. We're encouraging lots of protein, fats and what ever else looks good to eat. I'm hoping the increase in mobility will get him more hungry. We have also increased his appetite stimulant to 3X a day. He's not a fan of peanut butter or nuts, some cheese is ok, he used to love yogurt and granola, but not sure what happened there and won't drink shakes either. Sigh.... he makes it difficult at times when it comes to meal and snack time.

Plan is to still admit on the 11th of August for a week of anti-body treatment with some adjustments. He is only going to receive half the dose this time around. I asked about waiting a week or so and the doctor said a week isn't enough time to really make any great weight gain. So, some medicine is better than none, I guess that's the logic.

Because Jack has lost a lot of strength, the doctor wants us to start some physical therapy. We have an appointment at Handprints and Footsteps (Pediatric PT) on Thursday morning. Back up to Children's Thursday afternoon for another follow up. I'm pretty sure we will start the injections on Friday and they go throughout treatment. Not sure how these are going to go since there is no fat on on him. Maybe I'll see if he'll let me try his hip instead of thigh, not looking forward to these. Ugg!!

Thursday evening we have open house at his school. Even though he won't be starting this fall, it will be good for him to meet his teacher. Maybe we can do some FaceTime with the classroom too when he's feeling up to it. So, a busy day on Thursday. He asked to go to the Lincoln Zoo on Wednesday, it's nice to hear him wanting to get out and about.

Today we're thankful for:
- Jack being able to use his walker more, which is saving both my and Tibor's back. :) We have a wheel chair too if he wants to go out and about.
- finally we are starting to see small baby steps to Jack starting to feel a bit better. Though I haven't heard him whistle in a while, (he whistles when he's happy and feeling good) hopefully soon I'll hear that melody out of his lips again. 

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