Friday, September 30, 2011

The "things-are-not-so-great" Henry Update

I was so looking forward to today's post...

I knew it was going to be a busy week with appointments at the orthopedic doctor and a follow-up appointment with the pediatrician (who specializes in children who come from international adoptions)...

we were going to get information on the severity of Henry's arthrogryposis and hear this local doctor's treatment plan and then I would contact Shriner's in Philadelphia to make arrangements for a consultation and second opinion there...

we were going to see how much weight Henry gained now that he is home and eating well and being loved-on all day...

The orthopedic results first.

Henry does not have arthrogryposis.

Yep.

That's right.

The diagnosis from his country was wrong.

Sure his feet LOOK like they have arthrogryposis. And it was pretty apparent that his right knee was dislocated, like sometimes happens with arthrogryposis.

But his legs are "wobbly" not stiff. Same with his arms.

The orthopedic doctor did x-rays.

Both of Henry's knees are dislocated. Both of Henry's hips are dislocated. Both of Henry's elbows are dislocated.

Henry has a 110 degree curvature of his spine. Anything over 90 degrees requires surgery or else at about age 5 the twisting of his spine would impinge his breathing so badly that he would eventually suffocate to death.

So....

thank GOD for the mistaken arthrogryposis diagnosis!

Without it Henry would not have been eligible for international adoption until he was 5...

and he probably would have died.

But now our treatment plans are kaput.

The orthopedic doctor does not know WHAT Henry HAS.

It is probably some kind of genetic and/or chromosomal syndrome. So we were referred to a geneticist to get a diagnosis before any orthopedic treatment can proceed. Of course the geneticist he referred us to does not have any appointments available until the end of November, so we may need to search a bit for someone more "available".

Next up, the pediatrician.

He weighed 13 pounds 6 ounces exactly two weeks ago.

We used the same scale yesterday.

He weighed 12 pounds 5 ounces.

I almost passed out.

He has been drinking between 26 and 30 ounces (split between breastmilk and formula) every single day....

but the pediatrician said his little body is like a concentration camp survivor...

he has not had good nutrition for so long his body cannot process it...

it is going right through him.

We are trying a week on a special formula for children with severe food issues...the proteins are already broken down and he should be able to process it more easily...and lots of probiotics to help heal his gut to allow for absorption of protein and nutrients...

the doctor is worried about him getting sick in his frail state...

so am I...

especially with 6 other children at home, 5 of whom are in 5 different schools...

and the weather starting to change to fall here in the south suburbs of Chicago...

So today I am a bit overwhelmed.

In need of prayer.

Please send one up for my little Henry if you can....

and for me...

a worried mama to a baby with an unknown syndrome losing weight in our land of plenty.



44 comments:

  1. prayers, prayers, prayers!!!
    hugs,
    love,
    Nancy

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  2. prayers for you and your sweet boy!!

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  3. Lifting you and little Henry up in prayer today.

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  4. We are praying for you!!!!!!! So glad he is where he needs to be!!!!
    Sending BIG hugs!!!!!!

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  5. Oh Carla! Praying for sweet Henry.

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  6. Okay - I am definitely praying. I was wondering if he wasn't misdiagnosed when you said he was 'wobbly' because kids with Arthro are NOT wobbly. BUT... don't rule Shriner's out yet. THEY DEAL WITH BIRTH DEFECT KIDS and I would definitely still not take that option off the table. Orthopedic issues is what Shriner's does best!! Whether they have Arthro or not - the Dr.'s in Philly treat tons of kids with orthopedic birth defects.

    Also - you need to go on the RR after the rainbow yahoo group and get connected with all the families who have had kids with the re-feeding syndrome. The wealth of knowledge on there is HUGE. Sign up ASAP and tell them what you have learned. Ask for help.

    I'm praying for you. I Love your sweet one.

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  7. Carla, I'm praying for you and your sweet boy. Praying for heavenly wisdom to fall upon each of his doctors. Praying for answers and praying for health for your precious little guy.

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  8. I second what Julia said. After the Rainbow is a WEALTH of information! That and you can vent, get prayer, and encourage others:)
    I am PRAYING for you, for Henry, and for the doctors. God certainly worked things out so that Henry could get home to you:)
    (((((HUGS)))))

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  9. Well, thank goodness for a misdiagnosis that has allowed you to bring him home, but praying you will find the answers you need soon. Praying for little Henry, too!

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  10. Prayers for you and for sweet Henry! And big praises for that misdiagnosis- Thank you Jesus! It will all be all right, but I know right now you are in the midst and you just need to be lifted up. Know that you are :)

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  11. This update broke my heart! I am praying for you guys and for your sweet baby!

    Vanessa

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  12. I third what Julia said! I'm praying!!

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  13. Praying for your precious boy and your entire family.

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  14. We are praying!!! I agree with everyone else about refeeding syndrome! We dealt with it for weeks and weeks with Matthew and Michael. It's very, very serious but can be worked through. DO join After the Rainbow group if you have not already done so. Such support there!!! Hang in there! Praying more now... Debbie

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  15. I'm with you - THANK GOODNESS HE WAS MISDIAGNOSED - or he'd still be there, waiting. I also agree with Julia - Shriner's is not just for Arthrogryposis - and Chicago's Shriners might be a good place to start, locally, to get a diagnosis - then move on to Philly if you feel they can best treat him there. God brought Henry to you with deliberation and reason - He will guide you through it all. Get everyone a flu shot - put up a handwashing sign on the front door - get out the hand sanitizer - and ENJOY your little man.

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  16. Out of everything in this post the one thing that took my breath away was the misdiagnosis Henry got in his country, and the fact that it most likely saved his life!! God's got this one Carla.
    Answers will come I'm sure.
    Keeping Henry and you in my prayers

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  17. Prayers for precious Henry, and for your family!

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  18. I am with Stephanie and the others-GOD's hand is all over this one-sending hugs to you and prayers for all.

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  19. Our family will be praying for you and Henry! I wonder if Henry has Larsen syndrome. I am not an expert of any kind, and only know that because we considered adopting a child with this syndrome. It causes hypermobile joints. It is very rear and there is not a lot of info on Larsen syndome, but I know another family on RR that has a child with this condition.

    Katya Bukowski (RR group lurker).

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  20. Wow! SOOO thankful that he was dxed with Arth. What an amazing praise. So so thankful too that you were obedient to God in adopting Henry and that you have him home where he can get good medical care. It is amazing. I'm praying for you and him that his body can get the nutrition it needs and that you are able to get a better diagnosis and treatment plan!

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  21. praying for you and your beautiful little boy!

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  22. Oh Carla, We are praying. I am so thankful that you were able to adopt him and praying that you can get into a geneticist asap and figure out a treatment plan for that sweet boy. Hang in there.

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  23. Absolutely praying for you and Henry, Carla.

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  24. Baskets full of prayers for All of your family..

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  25. Praying for Henry!! Consider homeschooling..if only for this year alone until Henry's health can get back on track. The less running around you have to do the better. Looking forward to updates on Henry!

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  26. Praying for you and Henry and I really hope he will get the help he needs. How scary but you are right on top of things and getting done what needs to be done.

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  27. So scary, but my goodness, praise God he is here in American now with a loving family! I will be praying for your peace of mind and for Henry's healing and future thriving!

    God bless your beautiful family!

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  28. Different problems mean different solutions. He has gotten this far for a reason, that is apparent. Answers will come. Hang on to hope!

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  29. Thanks for all the encouragement today! I felt lifted on your prayers and encouragement!

    Already found a new ped geneticist to see Henry next week!

    Thx for the Larsen's syndrome suggestion...it was what I found also doing google research...we will see if we mamas dx as well as the experts!

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  30. Tammy (Nathanael's mommy)September 30, 2011 at 3:30 PM

    Praying for you, Henry, and your family! Thank God he has a plan, if He did not then Henry would not have been misdiagnosed! God is control and He has a beautiful plan for Henry's life hense is why you have him!

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  31. Carla, wow this is a lot to process! Many prayers coming your way.

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  32. Thinking of you and hoping for little Henry to find the help he needs!

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  33. Bless your hearts! God knows all about it as you know. He already has a plan.
    Joy

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  34. Carla, I am praying for both of you tonight! It must be overwhelming - I hope that you get answers about his condition soon. I saw your post about getting in to see the geneticist next week and that is awesome!

    Love,
    Lisa

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  35. Praying for you, little Henry and all your family. A big hug.

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  36. Praying for you, for Henry and the doctors. God is not surprised, and has a plan. Praying all is revealed soon!

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  37. I'm so sorry for all the bad news this week! I hope a new diagnosis and treatment plan are found soon, but the delay gives you time to work out a feeding plan to get his body stronger for whatever that treatment might be. I will pray for little Henry!

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  38. Poor sweet boy! Thank God you were able to get him out of there when you did. Praying for you and little Henry!

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  39. I second the Larsen syndrome theory, I wanted to be a pediatric geneticist up until recently, so I've gotten fairly good at finding genetic disorders on the internet. Praying for you guys!

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  40. Poor little Henry! I hope and pray that you get definitive answers soon, so the doctors can start treating him.

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  41. I am PRAYING for you!!!!!

    "All things work together for those who love God." The God who took care of all of your many international adoption details is NOT going to abandon you now. God knew that you had six kids when you brought Henry home!

    Things are totally scary right now because you had a game plan, lost it, and may go many, many weeks before the doctors come up with a new game plan. But this "misdiagnosis" was part of God's game plan all along. Jesus we trust in you!

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  42. Got another Biblical slogan for you. "Love NEVER fails"

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  43. One of our IA kids didn't gain weight for a year. Wanna know why? She was a LOT more active here. I wonder if Henry is simply burning more calories with all the activity (as opposed to laying in a crib all day). 'Just a thought. I'm so sorry about his joints but happy that you're on the right track now (though misdiagnosis doesn't surprise me one bit). Paul said this last Sunday that we "are not to have anxiety" which is so difficult for a mama in general much less one with a sick baby. So all I can say is trust. You jumped into this with a leap of faith and it seems your free-fall is gonna last a little bit longer....blessings and prayers.

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