Monday, May 23, 2011

Concerning Yuri

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!

7 comments:

  1. Aw man! I'm so sorry to hear about the medicine effects. And the trouble getting them IN him. That must be discouraging. I will step up the praying. God knows exactly what is needed. I know He does.
    Your kids are all so stinkin' cute. You are doing a great job being a mommy of 4. Still wish I lived close enough to help. Will be praying though!

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  2. Still praying for y'all, Autumn. Hang in there! <3 Thanks for sharing pics with us!

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  3. I have followed you on your journey to rescue the boys, although I have never commented. I continue to pray especially for Yuri and for you and you continue the mission of "rescuing" him.

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  4. i take thyroid medication (early AM, with water on an empty stomach, an hour before breakfast). it has made a world of difference in how i feel.

    thankful you have experience with the ng feed. perhaps over time that will work well for dear yuri. i have not noticed the odor (but i do take it with water, not juice). praying for you and your dear family.

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  5. Nobody can ever say that you have not been trying EVERYTHING to help that boy! I'm praying for more progress with him... I hope one day Yuri's difficult ways will be a distant memory. Keep on lovin'! God bless.

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  6. All you can do is your best. Yes, they will tell you thyroid medication needs to be taken on an empty stomach... but if you cannot, you cannot. What is really more important is that you take it the same way each time. The end result of that is that the absorption is stable. If the kid is absorbing less than what is optimal, no problem. You will know that with the next blood work and adjust the dosage accordingly. So, kid absorbs less, so take a higher dosage to get the dose he needs absorbed. My son has been taking his thyroid medication with milk at breakfast for two years. He is just fine. His TSH was over 100 and normalized on this regime. Figure out how to easily get the medication into him and then you can see how much he is absorbing and adjust from there. Talk to your doctor about this of course but really, with kids you need to improvise and do the best you can.

    That Yuri is progressing is good. It must be a real challenge living with him at times, especially with three other essentially babes in the house. He is a sensitive kid with no experience with stimulation and will take time. Vent wherever you need to, enlist as much support as you can. You are helping this little boy.

    Ellen

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  7. Im all for the child labor! Start em' early!

    Hey - is it synthroid that you are giving Yuri? Email me and lets talk - we have been in an incredible struggle with Annies thyroid and medication for the past year.

    karen shervheim.

    Oh, and thank you so much for keeping us updated on all the children and adoptions that you are!

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