As before, I will lead with pictures and save the boring stuff for last. :o)
Handsome Yuri loves swinging.
He is such a little munch-kin!
Somebody else like swinging too!
Look at his curls! He looks like kid from the lollipop guild.
More child labor.
Caius James swinging and lovin' it.
This is his excited face.
I kept trying to get them to look at me so I could take a picture but they were way too busy to bothered with such trivial things when there was water and bubbles at their fingertips!
Oh Yuri...... Last week was a great week. He seemed to be happier and more calm. We seemed to be making progress and he spent a lot of time with the family. I rearranged the ENTIRE house to accommodated him. I think the new lay out might drive Asher and Roxie batty but it is working for him.
I felt really hopeful last week. I felt like we were moving forward but as many of you have told me it is like taking 2 steps forward and 1 back. Well... we got the lab results back from the endocrinologist on Friday with a prescription for a thyroid medicine. All the labs said was that his growth hormone and his thyroid was low. So I filled the script right away with much anticipation.
Then I read the product insert. Must be taken on an empty stomach 30 minutes to 1 hour before a meal and with a full glass of water. If you know Yuri you know that he doesn't DO liquids. No water, no juice! So I crushed up the pill and put it in a little bit of juice and couldn't get him to take it. So since I am quite proficient at NG tubes, after Caius, I put an NG tube in his nose and gave him the pill and the water straight into his tummy. Granted it took a lot to get the tube in but in the end it was better. I think it will get easier as time goes on.
On Saturday and Sunday, I gave him the chance to drink it on his own but he wouldn't have it. So I sat and squirted it into his mouth while he layed there and screamed. It took 30 minutes to give him the crushed pill and 3 oz. of water. If you didn't know what I was doing you would have thought I was torturing the child.
Not to mention the wonderful side effects of the stuff. He has lost his appetite. He is emitting a terrible odor. And his irritability is back. yay (insert sarcasm font here). I have been on the phone with the pharmacist, the endocrinologist's nurse and our pediatrician, trying to figure out what to do and it looks like we are out of luck. There is no other form of this medication and it has to be on an empty stomach with water. So now I feel like we are back to square 3. I won't say square 1 because he is much better than when we first got him home.
We might get a PT consult tomorrow and I'm going to the Pediatrician tomorrow to get a letter to give to our insurance as to why Yuri needs more the 20 therapies a year. Really? Anyway, I'm hoping to post some better news later this week.
Thank you all so much for your advice, encouragement, and support. I can't tell you what it means to me and does for me. Hugs to you all!