It's hard to believe it has been 2 months since we last updated this blog. It feels like the time has flown by. Mainly, it has been filled with appointments of every shape and sort: pediatrician, pediatric cardiologist, and physical therapist. The PT came to our house to evaluate Joshua. She was really impressed with his muscle tone and coordination. She did suggest using a rolled up towel under his chest for more support while he's on his belly. You will see from the photos how well that worked out. :)
He has a referral to see a pediatric nephrologist, due to one kidney being slightly larger than the other. They want to monitor it, but it wasn't anything that was of a huge concern right now. Other things on the horizon are a visit to the Emory University Down syndrome Clinic this month, another hearing test in a couple months, and a thyroid check at 6 months,too, I believe. Sometimes it is incredibly hard to keep everything straight. Our calendar is filled in, mostly for Joshua! He and I are also seeing a chiropractor to get adjusted.
This has been our life for the past 3 or so months, with very little change. The feeding issue has been a huge one for quite a while, taking up many of the hours in the day. Joshua had an NG tube as a fairly permanent fixture to his face since early July. Once he started get more lively, shall we say, he would usually pull the tube out at least once a day. Dave or I would get the honors of putting it back in, which was never very fun. This past Tuesday, however, Joshua pulled it out and the sticky tape that held it onto the side of his face was also coming off, so I decided to do an experiment and see how he'd do with straight bottle feedings. I was able to feed him just with bottles, BUT it would take 1-1.5 hours per feeding (a 4 oz. bottle). Everything that I read stated a feeding should really take no more than 30 mins, so I knew something wasn't right. He'd also gag, choke, arch his back, and move around so much that it was really hard to feed him.
We decided to call the pediatrician and see if we could get Joshua in to be seen this past Friday. There was an appointment, and I went in with a written list of symptoms, knowing how precious little time you get with a doctor to lay everything out. I mentioned the swallow study that was recommended when he was discharged from the hospital, but that we didn't have done at the time, and the pediatrician agreed it was probably time to have that done now. He also gave me a couple cans of Enfamil A.R. formula, which is thickened with rice starch to see if it'd help Joshua. I was so desperate for feeding time to be shortened and for us both to be happier about it, that I made up a bottle for him in the car right after the appointment. He drank it in a bit less than 30 mins! I was so happy and proud of him! So far, he has still been taking just bottles and tomorrow will make one week that the NG tube has been totally out. He has been drinking his bottles much more quickly now, usually between 25-40 mins. The gagging and choking that has woken us up in the middle of the night has pretty much stopped, too. I am hoping and praying that this will be the answer, although it does seem to be causing some constipation. We're watching that, and if it doesn't clear up in a week or so, will ask if we should stop the new formula and try something else. I do know that his formula will have to be thickened, as the regular formula was too thin for him and caused all the reflux problems and long feeding times. Thankfully, there are other thickeners that can be added to his regular formula other than rice starch, so if this formula doesn't work, we have other options. We also add his Zantac directly to his bottle in the morning and evening. He was used to getting that by his tube, so never had to taste the vile liquid. The liquid is also thin, so it would make him gag and throw that up along with some formula. When it is in his bottle, he doesn't even know and it all gets down.
So, yes, the pump just sits in the room, staring at us. No more annoying beeps and cleaning out the bag multiple times a day. We are keeping all the things around for a little while longer, though, just in case. If he isn't gaining weight, then the pediatrician wants him to go back on the tube, but I don't see why he wouldn't gain weight if he is drinking all of his bottles nicely now. It does bring a bit of peace back to the household, and it is one step closer to getting into a good groove.
Well, without further ado, here are the things everyone waits for. The photos! :)
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