Unfortunately, our Easter plans for the weekend have not come true as Bobby has been sick. We think its a cold/upset tummy/teething kind of thing. He's been very congested and when he gets congested he tends to reflux more and when he refluxes all hell breaks loose. After a very long night he's been able to get some sleep today and even dress up in his easter suit for a few pictures. He has been on Pedialyte all day so the real test will be tonight when he gets some formula.
Still, things are looking up. He had a great week in therapy. He had some sort of therapy four days last week and he exceeded everyone's expectations in terms of how long he was able to work. He seems happy to be active again. I think he really likes our new emphasis on talking games - once that boy figures out how to make a few consonants I expect our days of quiet Sunday afternoons are forever gone.
Valerie and I agree that we have times with Bubby now where he is happier and feels better than he ever has in his life. He is smiling more every day and is really becoming vocal and social. He's such a sweet boy. One of our favorite new things that he does is lightly scratch our arms or under our chin when we hold him. Adorable.
He had a pediatrician check up and we found out that he's gained half a pound since being home. He's on fewer than the recommended calories so the good weight gain is great news. He's also, for the first time in his life, on the same 50% Down Syndrome growth curve for height and weight. Up until now he's always been on the 25% curve for length. This is another great sign that he's getting the nutrition he needs. Given our troubles with reflux and feeding tubes its amazing that he's done so well. But, then, if I know about anything, I know how to pack some pounds on.
The next 2 weeks are crazy busy. Tuesday we're going to see a pediatrician who specializes in Oriental Medicine. We're hoping he can help with some of the reflux and congestion issues. Wednesday he has a swallow study where he will be xrayed as he eats a few bites. This will help our speech therapist determine if he is in danger of aspirating while he eats. Next week is our consult for the g-tube, his cardiology appointment, and his sedated hearing test. Plus, he has to get blood drawn once a week because he's still on Coumadine for his blood clot. Thank goodness he has such a great nanny to help with all of this.
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True Tales of a Boy and His Two Mamas
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4 comments:
Many congratulations on the height and weight increases! I do believe that heart repair has jump-started some good health. Here's hoping the GI issues can eventually calm down. May I just repeat that he is insanely cute in that outfit and playing so happily (despite being sick!)!! I am so glad you are having a little more joy together each day as he grows and develops. This sounds like a new beginning. (((Hugs))) all around.
where did you get that suit? he is so handsome. i am so glad he is so happy. it is amazing how good health puts you in a better mood.
Believe it or not, we got the suit from Sears. It was much cuter than the suit they had in his size at Target! Bobby was a really good sport about it, too!
4/19 Tobias told yesterday me you called her with an update and good news about Bobby. Now he's well and fun again, I am thinking of scheduling another weekend in Chicago. Love the Easter outfit. Get the kid a crewcut! Love, Great Uncle Bob
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