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.