T N T: A Tale of Two Brothers: Adventures in Physical Therapy (and other stuff)

Who knew what all went in to learning to crawl?! Wow. When Tristan was 6 months old, the very day, he began flopping around our house in a move my Aunt Becki termed the "Baby Seal". I personally believe he chose that method because we had hardwood floors in that house, because very soon after we moved to suburban paradise with wall to wall carpets he was up on those hands and knees getting into anything and everything. I bring this up because, though I didn't think about it at the time, I had little to nothing to do with his decision to be mobile, or his chosen method. He just did it. Not so with Master Tiernan. Everything is a process which has been broken down into the smallest of steps.
Tiernan's beautiful and talented therapist, Amanda comes to our home most Thursdays. She is so encouraging and knowledgable. She also knows what it is like to have a challenging child. Her daughter has GERD. (the most severe and long lasting form of reflux) Anyway, I marvel at how the seemingly benign activities she will prescribe as homework have taken him from lying on his back with tight hips to rolling from his belly to his back, sitting up, (those happened on the same day) pushing up into crawling posture and pulling himself to standing! Truly fascinating.

This is also true in the eating world, though the progress here seems much slower. So many tiny things to consider when encouraging a reflux baby to eat. Lateral movement of the tongue (a development my mom asks about often, and I cannot speak to very well). His cheek tissue was not being stretched out like it would if he were eating normally. So it was crowding his mouth in a way. She told us to smoosh his face all around (Tristan particularly enjoys this bit of therapy) and try to get our fingers in there and stretch it out for him. It wasn't long before this yielded definite benefits. Not only are his chipmunk cheeks more flexible, but, in a total rockstar move, he has recently allowed a binkie in his mouth. This had been completely rejected many months ago. He still doesn't understand that sucking on it could soothe him, (and maybe even help him sleep better) but he likes to play with it now.

He enjoys rice cereal and occasionally sweet potatoes, but he is not a huge fan of much else. Even the "favorites" don't go in in large amounts. We are also working on cup feeding. He is not so much into the bottle thing, and a sippy cup is even too much work for a kid who doesn't have the suck and swallow thing down well. So he takes a tiny bit of white grape juice thickened up with something called Simply Thick. He isn't a giant fan, but we do what we can. Like I said, the eating is a slooooow process but we are trying to be patient and celebrate day to day victories.

Amanda says he needs to be allowed to get messy with his food, so....

Medical progress:
Saw Dr. Pickens, his GI specialist, on Tuesday. He is pleased with his progress. Just a month ago we were discussing another surgery to decrease his reflux permenantly by making him unable to throw up. This seems to be off the table now, thankfully. So we began the process of lowering his Prilosec dose and upping his Zantac dose because Prilosec has long term side effects while the Zantac does not. So this is a delicate balancing act, as we are discovering. He laid out a fairly complicated wean schedule, but after 2 days, he does not seem to be tolerating that very well. Am currently waiting to hear back from him regarding this little bump in the road. In spite of this, he is growing very well. He now weighs 20 pounds 8 ounces and is 28 inches long. (50th and 23rd percentiles respectively). We are also working on increasing (slowly) the amount of formula he gets through his tube every hour from 45 mLs to 52 mLs. This will allow him to be off his feeds for 6 hours a day instead of only 4, and still get the necessary fluids.

Yesterday we went to visit Dr. Escobar (no known relation to our Escobars). He is the surgeon who placed T's G tube. There has been a persistant red spot in the scar which has been infected a few times which we are quite sure is a stitch that has not dissolved. Leave it to our son to be in the minority. For most kiddos this would be solved in the clinic without much more than some pain relief. But for our drama king, Dr. E. doesn't want to do it without the use of sedation, which means having Dr. Lord (the peds Cardiac Anaesthesiologist) present and the use of the OR. They also want to have him on the boards as staying the night for observation. (Insert big sigh) While I doubt this will be necessary, just the fact that our boy needs this huge production where the average kid (even the average heart kid) would not is mildly frustrating.

July 2nd marks Jason's and my 11th anniversary. How will we celebrate? By going to Tiernan's cardiology appointment and holding the little monkey down for an EKG and Echo. Oh boy. :) At his last echo, Dr. Stefanelli saw there was some narrowing at the coarctation yet again. He didn't feel it was significant, but I am anxious to see what that looks like now, 2 months later. Something tells me, that our Tiernan has been working overtime at securing his spot for a second angioplasty in the not too distant future. Perhaps I am overly concerned, but the moment Dr. S. told me the chances of needing it to be ballooned again were extremely low (this was back in December) I knew he should not have said that within earshot of Tiernan. That was a challenge to him I think. We shall see.

In other news, Tiernan seems to really enjoy the bathtub...unlike his big brother at that age.

He and Tristan are both learning how to be gentle with one another. They love eachother so much and sometimes get over excited.

Unfortunatly the weather has not cooperated much, but Tiernan LOVES being outside. He thoroughly enjoys sitting on the front porch and watching the happenings in the neighborhood.