Carters health has been an up and down rollarcoaster, which *knock on wood* is on an upswing. The surgeon went to a national conference and presented Carters case to the other specialists and the general concensus was that the first time around he didn't use enough botox. So we back to the hospital and the surgeon redilated and botoxed his throat. This is just a temporary fix (if it ever works). The goal is to get Carter at least older than 6 months, and hopefully a year old before we have to have surgery. The surgery is basically just cutting the muscle in his throat in half with a laser, so the muscle can never contract again. But there are risks, and the risks are much higher the younger he is. So we are just buying time. One of the side effect of the surgery is acid reflux, because that muscle is open permenately, so not only can food go down, but it can also come back up. About 3 days post op things got really bad. This poor kid was just throwing up, and refluxing over and over, and you could smell the acid in his throat, and crying, and crying and crying some more for about 18-20 hours a day. Lets just say I almost lost my mind. I would suction this acid/formula mixture out of his nose and throat a million times a day. We were giving him 3 medications. One of them twice a day, another 6 times a day, and the other about 5-7 times a day. One of them, after prolonged use had side effects, but I don't even want to imagine life if he hadn't been on the medicines. I was also holding him upright during the day again, and also mixing his formula with A LOT of rice cereal, and syringing that into his tube, to try and weigh down the food in his stomach. Well, I went to the pharmacy one day to refill his prescription and they informed me that they were out of stock of the main medication, so they contacted the pedatrician, and switched him to a different medication, which is basically the same. It was cheaper then his current medication, but I started to panic, thinking of the adjustment period for the new medication. Let me tell you.... IT IS THE MIRACLE/MAGIC/MAGNIFICENT DRUG OF THE MILLENIUM!!! We gave him his first dose and about 30 minute later, he smiled. Then smiled again. And was happy, and laid on his back as content as a monkey in a sack full of bananas. And an hour passed, and two hours passed. We were trying to decide if we should give him his other two medication, but decided to wait. In the past two weeks he has sort of kind of refluxed 1 time!! Yes one time!!! He is only on the one medication, two times a day now. I can't tell you how much this has changed our lives!! In terms of his feeding. The surgeon wanted us to try feeding him and see if he choked or not. We gave him his first bottle, just 15 mLs and he had no problems. Then the next bottle he drank only 5 mLs or so and choked. Then the next one he did fine, the next two bottles he choked. So we have NO idea what is going on right now. Whether it is open or not. We have another swallow study on Wednesday, so we will have a more scientific answer than "Was that a cough? I don't know, did it sound like a cough to you? Well kind of."
Now he is 5 months old. He is still super skinny...like 12 lbs skinny, but is in the 75% for height. None of our kids got above the 5% for weight until they were at least 2 years old though. He laughs. Giggles. Is very ticklish in his rib cage and on his back. Loves to coo. ADORES KYRA!! Just relized we have dogs a couple days ago. Bangs his head into my chest when he gets shy. Just discovered he has toes. LOVES TO STAND!! He is not a fan of tummy time. Rolls over. We love our little HAPPY man!
