Happy 5 months to Sean

I can't believe he is 5 months old already.





 




















Today we went to Dr. T who is the original GI specialist for both Sean & Meredith. The only reason we saw Dr. F was because we felt it might be a little more convenient to see someone in Brooklyn. Not only was it not more convenient, but she sucked the butt.

I have always liked Dr. T, but he really impressed me today. First he had his nurse download & print a growth chart for children with Down syndrome. Then he came in & asked me what had changed with Sean from the last time we were there. I filled him in on the surgery, our nightmarish appointment with Dr. F and Sean's general health & reflux symptoms.

Dr. T couldn't understand Dr. F's thinking for the failure to thrive diagnosis. He said that Sean was clearly thriving and that a lot kids who are failing to thrive are sickly looking kids and they look emaciated. He looked Sean over and said "this kid is very clearly thriving & doing well." Music to my ears. He went over the growth charts with me. For a typically developing child, at his weight & age, Sean is in the 10th percentile for weight. For a child with Down syndrome, Sean is in the 50th percentile. I'd say that's pretty damn good! Especially considering that Meredith isn't even on the charts anymore for her weight.

We discussed the formula (Nutramigen) that Dr. F wanted Sean on and again Dr. T couldn't figure out why Sean would need to be on hypoallergenic formula. He agreed with me that if he had some sort of allergy, it wouldn't matter because the powder would be mixed with my breast milk. He said that unless Sean shows signs of an allergy, we should not treat him as though he does have an allergy. So far he shows no signs of one. If it ain't broke..... don't fix it. He also agreed that it would've been unnecessary to put Sean on a formula at all because he's clearly doing well.

Then we discussed the prevacid. Dr. T feels that Sean's dose of 7.5mg 2x a day is not enough. He said that infants metabolize medication more quickly than adults to begin with and typically, children with Down syndrome metabolize medication even faster than the average infant. We had heard that before when Sean had his surgery. We were told that children with Down syndrome typically metabolize anesthesia more quickly than the average child. So Dr. T increased Sean's dose of Prevacid to 15mg 2x a day.

We discussed the reflux and he explained how the drug actually worked. It works by minimizing the amount of acid produced. It does not, however, fix the sphincter that allows the food/milk to be brought back up into the esophagus. So the act of refluxing is still there, it just does not burn. Dr. T said that 50% of children outgrow the GERD by 6 months as their systems mature and 75% of children outgrow it by 12 months. Hopefully Sean will be in the 6 month category, but if not, at least his GERD is being treated appropriately now.

In addition to the prevacid, he advised me to give him some cereal mixed with breast milk before he nurses. That would be akin to putting cereal in a bottle. It will help the milk to stay in his belly & not be refluxed up. Being that Sean has already started solids, I don't necessarily have an issue with that, but what a pain in the ass. So if I'm able to do it, fine. If not..... eh.... he's still getting cereal at least 1x a day. He also explained that even though fruits & veggies are heavier than milk, it's a good idea to mix the fruits/veggies with cereal. The cereal would be the absorbent part of the equation.

I then asked informally about Meredith. He said that it's not typical of a toddler to not gain any weight in 10 months time. He said it happens, but it's not typical. It could be any number of things, but the one thing he ruled out right away was celiac disease. If Meredith had celiac disease she'd have a whole slew of symptoms in addition to the lack of weight gain. He said that it could be a malabsorption of some sort. I really wasn't paying attention after "it's not typical." I wanted to scream "Thank you! I have been saying that for months & months and no one listened to me!" He said I should discuss with Rob what we'd like to do (blood tests, etc) and make a formal appointment to go over Meredith's history since he hasn't seen her since her GERD was resolved. So we'll see.

I left Dr. T's office today feeling really good. Thanks Dr. T!

Sean's physical therapy & occupational therapy have finally been approved as well. It took a lot of pestering, but it's finally approved. I hate with all my might that I have to go through so much BS to ensure my son gets the services he needs. Not even services he's entitled to. Just services he needs so that he can catch up & not fall behind in milestones and such.

Anyway, thankfully enough we'd already started working with the physical therapist that was assigned to Sean so it was a seamless transition. Even though he's only been doing the exercises she prescribed for a week, there is already some improvement in his coordination. He is lifting his head more & more and sitting better everyday. It makes me feel so much pride to know that with a little bit of guidance Sean can accomplish so much so quickly. He makes it look so easy.  It gives me great hope for his future.

He's also making an amazing amount of progress with the speech/feeding therapist. He's giving us resistance when we do his oral motor exercises. You have no idea how exciting that is. It's a wonderful feeling to know & actually feel that what I'm doing with him is actually making a difference.

We also saw the neurologist..... Wow! We've been busy. Holy moses. Anywho.... Dr. S said that by all accounts Sean is perfect. At least neurologically. That makes me feel so good. And Dr. S was a fabulous dr as well. His bedside manner was simply wonderful. He has ordered a few tests to make absolutely certain that Sean's brain, spin & brain activity are normal. That makes me feel good as well. At least we'll know for certain that at this stage in the game, Sean's brain & cervical spine are documented to be "normal"

I can't believe how busy we've been. Yeesh! I knew I was overbooked, but I guess I just didn't know how overbooked I was. Things don't seem to be slowing down either. Next week is looking just as busy.