Home again...

We went back to Doernbecher today for Kyle to have an endoscopy of his upper GI system. This all came about because his reflux, maybe we've moved beyond that term to vomiting, was happening 20 times a day. No joke.

His pediatrician ordered lab tests for allergies and iron deficiency. We know there are white blood cells in his GI tract, which typically signals allergies. We are waiting for a blood test that will tell us to what he might be reacting. We tried a hypoallergenic formula with no success. We have him back on my milk from the elimination diet days.

The procedure today was to rule out other conditions like eosinophilic esophagitis. All of his parts looked good. They took some biopsies of his esophagus and stomach. We'll hear back on those in about a week. There was no indication that the results would give us any help with finding out what is causing all of his troubles.

We wore him out by going to visit a new baby at the other hospital on the way home. He has his bear in one hand and cookie monster in the other.

Happy birthday, Kyle!

There are so many events to track time from: December 15 (bed rest starts), January 21 (Kyle's birthday), February 23 (Kyle came home from the NICU), and March 3 (Kyle's due date).

Then:

 

 

Now:

 

Today, my baby turns one!

Kyle's favorites:

Food: none. He refuses everything.
Toy: singing helicopter. He has it in his little hand in the picture.
TV: anything. This kid could be asleep and he sits up and cranes his neck if a show comes on.

He is learning to cruise with a little walker. He pulls himself up to standing. We can't keep him out of the dishwasher or fireplace. His speech has grown by leaps and bounds since his surgery. Prior to his surgery, his home nurse was discussing Early Intervention as he fell further and further behind in speech. Since he's healed, he's gone from barely forming single syllables (ma, ba) to babbling non-stop. He can even say "Kyle." He has no idea what that means, but it's just about the cutest thing you've ever heard.

No matter what date we track time from, it's been a crazy year for our family. And though Jeremy and I are always exhausted, in the evenings, when our house is finally quiet and Kyle is asleep in my arms, everything just feels right. We love you, little man!

Speed bumps

Kyle has started food therapy. We've been to one appointment and have another one scheduled for this week. But we have had constant phone calls with his therapists.

The transition started very smoothly. Kyle was very interested and we went with it. Then two days he woke up with the same cold his siblings got over Christmas. He completely lost interest. Then his reflux started flaring pretty bad, so he was actively against the idea of anything going in his mouth. When teaching a kid who hasn't been allowed to eat, the prevailing wisdom is to let them take the lead. A refusal of food means you stop and wait until next time. There is no cajoling or trying to sneak a little more in because we want Kyle to learn that eating is pleasurable. So, we've been at a standstill.

Also, the elimination diet made it extraordinarily hard to find foods to offer Kyle. We weren't offering him anything on a spoon from us because we were forcing a medication down his mouth 4 times a day that had to be given orally. We didn't want him to associate the medicine with eating. I went on a hunt at Whole Foods for things Kyle could hold that fit in his diet limitations. I found exactly one item and hoped he liked rice mum mums.

Then we had another switch because after six weeks the elimination diet hadn't helped his reflux. There were times when I thought he was on the upswing only to slide right back in to his regular barfing pattern. We tried to eliminate even more from my diet, but after ten days with zero improvement, I stopped. I discussed it with Kyle's therapists and dietitian. We decided that with no results, I would resume eating a regular diet. It's been 5 days of that, and, again, there's been no change in his reflux. We are still going to go very slow with Kyle's food introduction and see where that leads us.

One therapist recommended more visits to a GI doctor for additional testing to rule out some conditions. We will be following up with that in the next couple of weeks. It would be nice to have some answers. Our pediatrician said last week that Kyle's case of reflux is the worse he's ever seen. I know it isn't the worst ever, but it was nice to have some acknowledgement that Kyle's reflux isn't normal.