Tuesday, February 22, 2011

Update again

Asher ran a fever ALL weekend, so we took him back to the doctor and come to find out he has ear infections that are flaming and pussy. :o( poor lil guy. His rash was gone on Friday but it left in waves down his body. So his forehead would be clear and then a few hours later his cheeks would be clear and so on. So now we don't think it was the measles but an allergic reaction to the penicillin. Anywho, we are on a different anitbiotic and I got him into our chiropractor today. So hopefully we are on the down hill path to wellness.

Bohdan is still happy as a clam and unscathed through all the sickness.

Caius still has a virus. He has a cough and runny nose. He is also throwing up quite a bit which I think is due to the drainage.

And then Yuri.... His nose isn't runny as much and he is responding well to my voice. For example, He will crawl up to one of his brothers and raise his hand to hit and I can tell him, "Yuri, no hitting. Be gentle" and he will put down is hand and look at me. So I do believe he is learning. He is throwing up a few times a day and each time it is about 3 to 4 projectile spews. I hope this passes soon.

As for the neurological appointment, the diagnosis of a metabolic disorder is much worse than the CP or Hydrocephalus. We are starting at square one and have no idea what kind it is, what parts of his body are being affected, his life expectancy or his prognosis. We are having to go to a super specialized geneticist to try and answer all these questions. If anyone has any advice concerning metabolic disorders I would appreciated it. :o)

I will try to get you all some pictures soon.

11 comments:

  1. Wow you are one tough lady! I don't have any ideas about metabolic disorders but here is a site with more info: http://www.geneticalliance.org/site-search/results/metabolic%20disorders

    I am sure you will be set up with the professionals but if I run across anything else I'll holler. Poor boy, not feeling well all the time like that and then to have had such a rough beginning.

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  2. I have been following your wonderful (yet challenging) journey to your new little guys! Congratulations on your handsome crew!

    I don't usually post on blogs, but you asked about metabolic disorders. There is an incredilbe clinic in lancaster county, PA - called the Clinic for Special Children, run by Dr. D. Holmes Morton . . . they work extensively with rare inherited metabolic disorders (many of which often show up in some of the conservative amish communities). I know of several families, who aren't even from PA, who have contacted him and had great experiences with him.

    Here's the address, www.clinicforspecialchildren.org

    Who knows, maybe he would be able to give you a lead.

    May God bless you all abundantly - and bring some healthy days to all of you!
    Monica

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  3. I will continue praying about Yuri's diagnosis. I hope you get some answers soon.

    AND I really hope all the sickness leaves your house QUICKLY. PRAYING for health over there!!!!

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  4. Praying for your little ones!!! And thanks for your prayers too!
    BIG Hugs!
    Amy

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  5. Has Yuri had a basic PKU test?

    ~Barb

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  6. I'm a nurse working on my master's to be a Neonatal Nurse Practitioner. Most metabolic disorders that are fatal are fatal in the first few hours or days of life. I can't think of one that, if found later in life, can't be treated with diet control and medication/supplements. Having said that, please know that I am not an expert. Have they said anything about a mitochondrial disorder? Your boys are all precious. I enjoy following your blog, as well as several others while I decide when I'm going to make the "leap of faith" and adopt myself! Keep us all posted on Yuri's diagnosis. Sending healing and healthful prayers to you all! Peace, Allison

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  7. I have no additional information, but I just wanted to let you know that you and your kids are in my thoughts and prayers. I've been reading your blog for quite some time- and I pray that you get an answer to the medical questions for Yuri soon.

    Have they ruled out food allergies? My sister's son vomited frequently after eating (he's 2 1/2) and they finally determined that he was allergic to peanuts, soy, milk, corn and wheat.

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  8. Your family is prayed for daily by my family. We rejoice at the happiness of little Bohdan and cry with you over Yuri's struggles. I was so glad to hear Asher doesn't have the measles and hope he clears up soon - same for sweet little Caius.

    I'm so sorry this has been hard. It's very easy to get caught up in the "romance" of rescuing one of these precious ones, that we forget that it can be very hard once you get home. Thank you for being so honest and allowing us to see the truth. It gives us the honor of interceding on your behalf to the very throne of God.

    I Peter 5:10 - And the God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while, will Himself restore you and make you strong, firm, and steadfast.

    Many hugs - Michelle

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  9. Hi - http://www.childrenshospital.org/clinicalservices/Site1889/mainpageS1889P0.html

    CHB is amazing and they have some useful links to look for metabolic and rare disorders.

    Praying for some answers for you!

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  10. No advice, just wanted to tell you we'll pray that everyone gets healthy soon and that y'all are able to figure out what is going on with Yuri. <3

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  11. Wow I just realized this post was written one month after Gotcha Day! One month!!! You guys have made it!! :0

    Just wanted to drop in and let you know I'm still praying for your family.

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