March 20, 2008 Update

We went to Children's Hospital for Jesse's check-up on Thursday. Everything went as I hadexpected - not any significant changes. His chest x-ray was good - no fluid accumulation - so we will cut back his diuretic to once/day for a month, and then discontinue it. The echo showed he still has pulmonary hypertension (but we already knew that because of how his O2 sats drop when he isn't on oxygen). But it did look like he has improved some. The doctor recommended we come back in 2 or 3 months to recheck, and continue on the oxygen and sildenafil for now. I will be watching his o2 sats on the pulse-ox machine at home, and if he no longer desats when the oxygen is turned off I should call her, because that might mean we can discontinue the oxygen. But I don't think she would anticipate this happening for a least a few months. And there is no real way to know if he will ever fully recover.

One negative is his slow weight gain. A few days ago I thought he had been eating so much that he must really be growing. But when I put him on our scale he was under 13 pounds. Yesterday confirmed that he really hasn't gained any weight since our last appointment. He was 13 pounds 1 ounce yesterday. He seemed to gain very well our first week home from the hospital, but since then hasn't gained any. She wasn't overly concerned because she said kids on Portagen don't usually do very well, and children with Down Syndrome grow much slower to begin with. She said he is actually at the 25% on the Down Syndrome growth chart. But we agreed to put him on a 22 calorie/ounce formula (when he isn't drinking breastmilk) and I will monitor his weight more frequently to see if he starts gaining.

We had some labs done to check his hematocrit and thyroid and I will call and get those results today. All in all it was a good check-up and everyone thought he looked good.

Matthew has been sick, and the rest of us have little colds. We are also in the middle of lambing - I think 8 ewes had lambs yesterday. So we can't be gone from home for very long. We are hoping to go to church on Easter Sunday, but will have to see if we have recovered by then.

In Christ's Love,
Kristan


Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls. (1 Peter 1:3-9)