I took Ryan to the Pediatrician's office yesterday for his well-child care check up. A "well-child care check up" with a special needs baby certainly isn't what it sounds like, nor does it even resemble the countless other well-child care check ups I have been to with other children.
Ryan is now weighing 15 pounds and 14 ounces, and he is 26 1/2 inches. The good news is that he has gained weight ... almost a pound in the last 8 weeks. Unfortunately, he's still not even in the bottom 5% of the growth chart for height or weight. Some of you probably remember that this is the case with Deborah as well. However, with Ryan, his curve is starting to get flat, meaning he's falling further from the chart with each visit. So, we now need to see a Pediatric Gastroenterologist.
He is still nursing full-time and we have introduced "solids". He had been doing really well with stage 1 foods so we went to stage 2 foods. That hasn't gone so well. He won't swallow them. Last night was the first night in about a week that I've been able to get him to eat solids at all. The dr suggested we go back to stage 1 foods for now. It could be that the thicker texture of the stage 2 is more than he can handle.
So, we'll see. We need to rule out any physical reasons why he might be struggling with eating and gaining weight. If we can't get his curve up more than we'll need to put a feeding tube into his little tummy.
Additionally, we've been referred back to the Geneticist to discuss the possibility of any additional Syndromes. The new diagnosis of the submucous cleft palate opens back up the possibility that it could be one of numerous syndromes. So, we'll see Dr. Stratton in June.
And... we also need to see the Urologist again to discuss surgery sometime in the next 9 months. I'm waiting to hear back from his office.
So, while we have 3 new specialist appointments, we also have good things ... his iron levels came back in the normal range ... low normal, but normal ... his lead test came back normal, and best yet ... we've now been seizure free for 18 days! I love our Pediatrician!
We had an amazing pediatrician in Dallas but we did not have a good Pediatrician the first 2 years we lived in San Antonio. The kids had to be really, really sick to justify an appointment and then we'd end up spending 4-6 hours waiting for a 5 minute glance by the dr. It was awful. When we had Deborah, Dr Rhame was the pediatrician on call and we've loved him ever since. I can't imagine dealing with this experience with any of the other pediatricians. It would have been really, really much harder.
Okay ... must run ... lots to do still. Thank you all for your love and support, and for all your prayers!
1 comment:
You are an amazing Mommy! You inspire me.
Liz :)
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