Answers to prayer

Well, I got back to London Sunday to good news.  Ren informed me that the night previous, the Dr at the hospital they were staying at performed another barium upper GI study and decided there wasn’t a malrotation of E’s small intestine.  He noticed something, but apparently it did not warrant surgery and they decided Ren and E could go home.  I think they may redo the study at a later date, but it is not a pressing issue right now.

So praise God for His infinite grace and mercy.  Ren and I are starting to come to grips with what we are dealing with.  There is so much that we do and don’t know, but we take it one day at a time and trust that God’s plan will work our for good.

So here is an update on E: (disclaimer – Ren still needs to edit the info below)

HEART: He has been diagnosed with tetralogy of fallot, which is a more serious problem than the previous cardiologist in Vietnam had told us about.  He will require surgery to correct this, most likely when he is 9-12 months old (Dec-Mar).

CHROMOSOMAL ABNORMALITY: We should get the results back from the FISH (sp?) test next week.  Most of the Dr’s agree that he probably has a chromosome 22 defect, possibly DiGeorge Syndrome.  If we get some kind of news on this front it may give us an idea of what to expect in the future.

DIGESTIVE TRACT: Probably nothing serious here, but the Pediatrician has prescribed Zantac to try to prevent vomitting, which has been ocurring more regularly and is why he had the barium study in the first place.  We are also going to try to start him on rice cereal since he has a very weak suck and generally hates to take a bottle.  He is still gaining weight (5.3 kg last week), but not very fast.  The bigger he gets the easier the heart surgery will be.

KIDNEYS AND URINARY TRACT: We see the urologist on Thursday.  Hopefully he can give us an idea if E’s penis will require surgery or if it is something that may correct on it’s own.  The contrast study of his urinary system showed that there was no reflux but that his kidneys were swollen.  Not a lot of news on this front.

SKIN: He will see the dermatoligist Friday about a birthmark that is off center on the back of his head and a large patch of exema on the top of his head.  His skin looks much better each week.  Due to the location of the birthmark, the pediatrician doesn’t think it is related to the rest of his issues.

BRAIN/DEVELOPMENT: We saw the early intervention specialists today and E was way below where a 6 month old should be in every category except communication (he was very talkative).  We will get home visits from them once a week to help with therapy/ideas to help him develop and refine skills.  We haven’t really seen anything concrete that links mental retardation with the syndromes that the dr’s suspect, but people with DiGeorge syndrome have a high liklihood of Schizophrenia later in life.  We don’t really know anything about his brain other than that he is delayed and it can’t be blamed on spending the first 5 months of his life in an orphanage because the other kids in the same orphanage don’t have the same problems.

That’s about it.  We will try to put new information out as we get it.  The biggest thing right now is trying to get E to eat and put on some weight.  Now that I am home hopefully that will help the situation.  We love you all and thank you for the words of encouragement and prayers.

M

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12 Comments

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12 responses to “Answers to prayer

  1. My prayers continue to go out to your family. Were you aware of all of these issues when you were matched with him? All the best to you and thank you for the update. BTW, FISH Fluorescence In Situ Hybridization) is the correct spelling of the test. It was ran on our very early stillborn son.

  2. Will continue with the prayers. Hold on to any bit of good new you can. 🙂

    Christy

  3. Beth

    Hang in there guys. Thanks so much, M, for giving us an update. I’m sending thoughts and prayers to you all everyday!

    Keep us updated as you can.
    Thank goodness you’re there now.

  4. Kim

    Our prayers continue to go out to you and your family.

  5. Jenna

    I really don’t know what to say but to offer my continual prayers.

  6. You guys are all in my prayers as well.

  7. I can imagine a little bit how overwhelming all of this is for you. One thing I can say for sure. I have seen with my own eyes many babies with TOF after surgery, and it is amazing how well they do! He will have so much more energy after his heart surgery and that should make a real difference in reaching his developmental milestones. Praying for your family as you adjust.

  8. My heart goes out to your family as you process all the overwhelming news you’ve gotten recently. This little guys sounds like a fighter, and that goes a LONG way. Just wanted you to know you are in my prayers.

  9. Had to come back and say, I know it is hard. But try to take this just one day at a time and not look too far ahead in the future. It is easy to start to see your child as a collection of symptoms, but he is a baby first, and needs love and kisses most of all.

  10. Ok I am so trying not to jump all over you with my ideas, but I have sort of been there. IF it turns out that your sweet boy does have digeorge syndrome, I think one of the best things you can do right away is find other parents. Drs./therapists are great, but they don’t know what it is really like to be a parent of a child with SN. There is a yahoo group and also I found lots of blogs with absolutely beautiful precious children. I think seeing adorable kids who are living with the same condition in helpful. Sending tons of prayers your way.

  11. B

    I think of you all very often and send my wishes for strength your way. E is so very lucky to have found you.

  12. Jean

    Mike and Lauren,

    We’re praying for healing and strength for Emmet and perseverance and patience for you. I’m so thankful that you were able to bring him home so that he could receive the care that he needs.

    Caleb came home from China at 31 months with a TOF– a surprise to us too! He also was very small (not on the charts) before his surgery.

    Jean

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