Saturday, March 2, 2013

The past six months in pictures (Winter).

WOW! I included all these pictures because they can explain better what a fun and busy Holiday season we had.

Sawyer helped me put the tree up after Thanksgiving. He had his own two ornaments at the bottom that he claimed and would constantly play with.

Ramen noodles and Mac n/ cheese were the two foods he consistently ate. The "gateway" foods, we decided. Which was perfect timing, since Christmas is synonymous with "junk food" everywhere we go. Rice Krispies were no exception...he loved those and pretty much everything that was too sweet, too fat, too rich, too decadent, etc. Couldn't quit bolus feeds quite yet- he needed SOME nutrients, though he was finally eating and getting ample calories.

So, in the meantime, Sawyer had  a few dilations on his esophagus to help keep it open so food could easily be swallowed. It'd work for the first two weeks, then slowly the strictures would start to tighten and we'd have a mess after everything he attempted to eat. The surgeon (Dr. Scaife) proposed inserting a stent temporarily in his esophagus to see if that would slowly help it to relax and open wider. So the day after Christmas we tried the stent without really knowing what to expect in the weeks following.

He must have picked up something between the hospital and home because the following 4 days were a nightmare. He couldn't eat, he didn't have an appetite, he was weak and fatigued, and he hadn't pooped or peed very much. We were certain is was the flu and he hadn't yet had the flu shot. So we nursed him as much as we could, and calmed him when he wailed during the night (assuming he was in pain), and finally I called the Pediatrician on a Sunday morning, ready to admit Sawyer to the ER, and luckily she prescribed him dis solvable Zofran. That very day he kept down broth and pedialyte (through his g-tube), and then the next day he could have higher volumes without throwing it all up. What a relief. But what a serious nightmare. And then a few days after that, he got the same cold that was going around the family and neighborhood. There was NO BREAK! So, for about the first month, Sawyer hardly took any food orally. We finally decided to quarantine him completely so he could get his health back completely. We wanted the stent out pronto! 6 weeks was too long, but we had done the time and were ready to get it out. AND then, he got sick again. We took him out to Home Depot for the first time in days. He of course licked the handle of the cart, and the next day was sicker than a dog. UGHH. So we had to push the stent removal back a week. So he went a total of 7 weeks with a stent. Which means, for 7 weeks he was either miserable because of the stent or because he was sick. I'm just glad I didn't have to endure that alone. Finally, on February 11th, Dr. Scaife took the stent out and raved about how great his esophagus looked!! He said it was huge, and the stent did its job in stretching his esophagus out. We're going back in  a week for an esophagram to see if he's progressed, regressed, or stayed the same. But as far as eating, Sawyer has made massive leaps of improvement. He's eaten everything but the kitchen sink at this point. It's been quite the journey, and we're not totally off tube feedings (yet), but I imagine that either by summer or fall, we'll be really close. For now, Sawyer is making up for lost time (and lost calories) by eating every opportunity (especially whatever mommy is eating. Sure to be delicious :)

I forgot to mention how wonderful Christmas was. He got a lot of cars and trucks this year. Brobee from Yo Gabba Gabba was a huge hit. He took it with him to the hospital the next day for his stent and it got a lot of attention, since it was the same size as him. He is now a master Magna doodle-er. We spend most of our days drawing trucks and snowmen, over and over and over and over and ............. again, obsessive tendencies, but it's harmless and I have needed to brush up on my doodling skills anyways.

Next major life event: Turning Two!! Stay tuned. Pictures to follow.

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