Sometime very soon, I will get around to blogging about my wonderful week in Hyannis, Massachusetts at the Oley conference but I need to do it when I have a little more time so I can do it justice.
I got home LATE Friday night and bummed around trying to catch up on sleep all weekend but we hit the ground running this morning. Raya had an appointment with her wonderful GI doctor at 8:30. She was SO excited to go see Dr. S! She has come a very, very long way from the days when she cried through the whole appointment and we felt good getting out of the clinic with just one vomit. She's even getting to the point now where she doesn't get hit with major anxiety when we walk into an exam room and she'll talk to Dr. S and be her usual silly self during the appointment. It's a huge relief to see her so comfortable in these appointments that are so important. I know that sounds strange and yes, it's kind of a sad statement but the fact is that these frequent doctor visits are going to be a part of her life for years to come so it's great that she's handling it better.
She is getting pretty good at cooperating for vitals. I totally didn't pay attention to how tall she is but I think it was about 96cm, and the doctor said something about her growing about an inch in the last 2 months. She's also still on an upward trend with weight. She's now at 14.6kg (32 lbs 3 oz) which puts her in the 41st percentile. In January she was 31 lbs 12.7 oz so that puts the last 6 months' worth of weight gain/loss/lack of gain into perspective a little bit. I'm glad we're moving in the right direction again. I had my doubts about the Duocal but it seems to be helping and she's tolerating it fine now.
While we waited a couple minutes for the doctor to come in, Raya colored a rainbow for me on the table. She chattered the whole time about what she was doing. I should have done a video. She cracks me up when she gets on a roll like that.
In the last picture, she was explaining to me that even though the cheetah was in the front of the line and the dinosaur was in the back, the dinosaur was the line leader because it was faster than the pony. There is no shortage of imagination with this kiddo.
The main thing that came out of this appointment was that we are going to move forward with trying botox injections in Raya's pylorus to see if it will help with her delayed gastric emptying. If we had to pick a biggest problem out of the 3 main problems she has, it would be the delayed gastric emptying right now. Most food that she eats ends up sitting in her stomach for several hours. The impact over time is that she eats less and less because eating once again becomes uncomfortable for her. We want to keep encouraging her to eat, but we don't want to be pushing her to do something that makes her feel yucky either, and if she's ever going to be able to eat enough orally to not need the G tube anymore, we have to address this problem somehow. Dysmotility is not really something that kids just miraculously grow out of. It has definitely gotten better over time but it can also reappear at the drop of a hat, as we have seen over the past 9 months.
The goal of the botox injections is to relax the pyloric sphincter, which is the muscle that opens and closes to release stomach contents into the small intestine. We are hoping that doing something to the pylorus will allow solid food to leave her stomach at a more typical rate so that she'll be able to eat more food at a time and not wake up late at night with stomach full of food and feeling lousy. It's not a complicated procedure by any means, just an endoscopy during which they will inject the botox into the muscle. Once it's all cleared through insurance, they'll call and schedule the procedure. I'm a bit of a pessimist when it comes to Raya's medical care. I don't ever allow myself to expect drastic improvements because of past experiences (like the GJ tube experience), but I will admit that I'm feeling very hopeful about this. We anticipate that the effects of the botox will last for several weeks. If we see good results from it, then once it wears off we will either repeat the procedure or else we will move forward with a pyloroplasty, which is a surgical procedure involving the pylorus. It has similar effects to the botox but is more permanent, which is why we are trying the botox first. I'm keeping my fingers crossed that good ol' botulism will do the trick. :)
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