Friday, May 24, 2013

Reflux is a biznitch

So, in my wittle blog break, Max had a procedure done at Children's Hospital. An EGD/Flex sig, which basically means they went down his mouth into his belly with a camera to check stuff out. The flex sig part means they went UP another area to see what there was to see. Max has had reflux his entire life. When he was a baby, he puked ALL.THE.TIME. He was a happy little puker, but it still was a lot of puke. At about a year old the puking stopped. I thought he'd moved past it, but he continued to have ear infection and asthma bouts again and again and again.

 I just so happen to work in the area that this sort of procedure takes place, so I'd talked a lot to doctors about Max. One doctor suggested taking him off dairy, thinking that he might be intolerant and it caused his reflux to go so high that it was getting his his ear canals and causing infection. We started no dairy a little over a year ago and for a while it worked. No ear infections for several months. Then he started having them again, though no where near as often. Then he started showing signs of reflux again, I could hear it in the back of his throat, he'd have those hiccups that look painful and sound worse. Then we went to his 2 year checkup and he had not gained one pound since his one year checkup and his growth had slowed. 

It was time to stop seeking free advice from the doctors I work with and be a normal paying patient. The doctor immediately tested Max for celiac and several food allergies. He also wanted him to be on Prevacid (which our pediatrician has not been a fan of this whole time). After 4 weeks with Prevacid, we'd do a scope.

He was obviously pretty nervous. Every nurse or doctor got a complete tutorial on Mickey Mouse

No he didn't get any medicine to make him loopy, he's nuts on his own. He wanted to ride in the bed like this.

He did fine in the procedure, and they actually did not find anything major. There was worry that he had a disease called Eosinophilic Esophagitis. There is no evidence, now, that he has this. However, there is SOMETHING causing all of this major reflux. The doctor suggested taking him off of wheat. At first I was against it. Since the start of prevacid and more vigorous trying towards getting Max to sit and eat his dinner, he had gained four pounds and seemed like he overall felt better. Then Max got his thirty hundredth ear infection last Friday. I had to call in. It just so happened to be on the day that Max's doctor was scoping, so he knew that Max was sick. And he called me personally to ask me to take away wheat. So, here we go. Wheat and dairy free. Don't worry, I'll blog about it.

We also had our last MOPS meeting. This last year was special for me because I had been asked to be a table leader. I was scared about being a leader of any sort. I got a good group of ladies at my table and we had a good year. I've been told that I don't have to reapply for my "job" like a Vegas dancer, so that's good. I'm going to miss all the business that MOPS held while we have our summer hiatus. I know my kids will too. They had just as much fun as me.

I also had the end of the year conference with Rylan's therapists. As of March, he was 76% able to speak at an age appropriate level. 80% will get him kicked out of speech therapy. His therapist is sure, based on his last two therapy appointments that his coming test (next Wednesday) will come out well over 80%. Can you believe this? This is the same kid that called a drink a "nurch" and sounded German/Chinese for almost 3 years!!!! This time last year, only his dad and I could understand him fully. Now? Everyone can! I'm so happy.

Developmental therapy is a different story. I had to make a few phone calls about one therapist and basically threaten to remove him from therapy at one point. I hate doing that, but I'll do it for my kid. And it helped. Towards the end of the year, Rylan started being seen 1:1 instead of being paired with another kid and he started getting the therapy he needed and deserved. I am hoping that I can work with him this summer and by the time he gets back to school next August, he'll blow them away with his scores and we might be able to say goodbye to that therapy sooner than later.  I've looked into other therapy centers and they don't offer what he needs, so we are kind of stuck with this situation, so I'm going to make lemonade out of those lemons. He'll also be starting a developmental preschool in the fall. I looked into him starting it this summer, but when I went to tour the facility, they explained their summer program as a lot of fun and games and not so much school time, so we'll save our money for the fall when the school time starts.

I am so thankful to be these boys mommy. I feel like God knew what he was doing when he gave us a couple of curveballs. Rob and I have grown up and grown together learning how to live off of one income so that I can stay home and tend to the therapy and medical needs of the kids. I'll never regret not working during this time. Its where I need to be. On Wednesday, we stayed home and played in our pool and Rylan declared it "the best day ever" and he filled my heart up all kinds of completely.

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