Here are some video's of us in the pool.
In this one he is jumping off the diving board at Grandma and Papa's house. I can't believe the progress this kid has made. We are so proud of him. I forgot to change memory cards in the camera, so we didn't have much room to record all his tricks. We will get more later.
Here he is on a jet ski that they bought 3 years ago. Papa took it out of the package today so he could try it. He kept calling it his motorcycle at first, but in the end learned it was a jet ski. Now when we go to Laughlin he is going to think he can ride by himself! Oh no!
Now for the not so fun Summer stuff we did.........More Dr. visit's and testing
How cute is this kid? He was such a trooper through the whole thing. I decided to have him tested for Celiac Disease since I have it and it's genetic. I figured, the sooner we know, the sooner we can treat it to prevent the long term effects. Well, little did I know what we were getting into. They did a blood test which showed positive but they then wanted to do an upper endoscopy to "confirm" the diagnosis. I didn't want to do that until the Dr-who by the way I absolutely LOVE-explained to me that he could have another condition called Eosinophilic Esophagitis (try saying that 3 times fast) or EE for short. What is that exactly? I pulled this from the wesite:
""What is EE?
Eosinophilic esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus EE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults. This increase is thought to reflect an increase in diagnosis as well as a true increase in EE cases. Fortunately, the medical community is responding and new scientific information is emerging to guide management of this disorder, which often persists with ongoing or recurrent symptoms.
Eosinophilic esophagitis is characterized by a large number of eosinophils and inflammation in the esophagus (the tube connecting the mouth to the stomach). These eosinophils persist despite treatment with acid blocking medicines. People with EE commonly have other allergic diseases such as rhinitis, asthma, and/or eczema. EE affects people of all ages and ethnic backgrounds. Males are more commonly affected than females. In certain families, there may be an inherited (genetic) tendency.
In individuals with EE, the eosinophils cause injury to the tissue in the esophagus. EE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve.""--scary huh?
It's rare for a person to have both conditions, but in the Dr's 20 years of practicing pediatric gastroenterology, she has seen it 4-5 times. So, we had the endoscopy done. It was the saddest day.
Here are a couple of pics while we were waiting for them to take us into the procedure room. He took Bunny along for moral support. They also had a basket of beanie babies that he got to pick one to take in the room with him and then home. He picked a penquin and calls him "Birdie" The first Gastroenterologist we met with was with Banner Pediatrics. I did not like her. She didn't seem to like Hayden let alone me. I couldn't understand a word she was saying to me and I thought she was very rude. So, my good friend Shelly told me that Phx Children's had an east valley location and they were good. I called them and they were booked out like 8 weeks, but had an opening the next day in Phoenix. I took it. We went and me the Dr and oh my! She is absolutly adorable and Hayden loves her. I felt so much better about her and she only works out of the Phx location, but is well worth the drive 4 times a year. Okay, so anyway, back to the day of the test-I got a little side tracted there. The procedure went well, he was only under about 8 minutes but woke up just as mad as could be. He cried and cried. I felt so bad. He fell asleep when we got home and slept for 4 hours! A few days later Dr. Ingebo called me with the best news ever-I'm being sarcastic. He has BOTH conditions. What luck huh? So we started with the Six Food Elimination Diet:
Empiric Six-food elimination diet is another type of elimination diet that has shown success in some EE patients. Instead of basing dietary elimination on skin testing, patients eliminate 6 common allergenic foods (milk, eggs, wheat, soy, peanuts/other nuts, fish/shellfish) regardless of the results of the allergy testing.
So, the eggs, nuts and fish we were off anyway because of the testing last year. The wheat is gluten so we were off that as well. But Dairy and Soy? Are you kidding me? What can the kid eat? Chicken, turkey, fruits, vegtables, potatoes and rice. That's about it. Not a problem becasue he likes all those things-not so much the veggies, but we're working on it. Here's the problem, he would not drink the supplemental drinks to replace the missing nutrients. They were really gross, I tried them. So, we decided to go the medication route for now.
Medications
Medications for EE most commonly include steroids to control inflammation and suppress the eosinophils. Steroids can be taken orally or topically (swallowed asthma medicine). For many patients, swallowed topical corticosteroids (fluticasone, budesonide) have led to EE remission (improvement while on treatment), though their long-term use for maintenance treatment has not been studied.
We have been doing that for about a week now and he seems to be coughing a whole lot less and sleeping better. It's so sad and hard, but he is such a good kid about everything. I hope that as he gets older we can go back to the food diet. I don't like taking medication for a long time. It just seems like it only masks the problem and doesn't treat it in this case. We'll just have to see.
He's so cute about his Gluten Free diet. Everytime he goes to eat something he says "does it have gluten fowee?" I love this little guy so much.
So there are some more things we did this summer. There is still more to come. I don't want to post it all together cause it would really take a long time and it's time to put Hayden to bed.
My next post title will be either "Welcome Baby Ethan", or "The things Shilo leaves behind". I haven't decided which one to do yet. Tune in tomorrow, or the next day whenever I get around to it. Bye for now!!
Sunday, August 23, 2009
More Summer Fun!
Posted by Sunny & Court at 5:10 PM
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8 comments:
Do the Stuff Shilo Left Behind, since I am remembering 2 things. I want to see if there are more. I am sure there are. How do I always end up leaving things? YIKES!
I made it home with my kid, that's all that counts.
Oh crap. I meant to comment on the post. Now I look like an idiot.
I can vouch for the fact that Hayden is cute (and somewhat hysterical) about his diet. He asked me for a snack one day and I asked him what he wanted and he said, "Lift me up to my gluten free shelf." I about died laughing. And it wouldn't have mattered if I had died because I came back to the house a few hours later when I left you guys there to sleep and he'd drug a chair into the pantry. I asked, "Hayden, is it OK with your Mommy if you have this (chair) in here?" and he said, "Yes, it's alright because I just got a bigger chair." I think he'd maybe tried to drag a small chair in and it was not working, so he pulled in a big one.
OK, enuff from me. :)
I am so so sorry about Hayden. That poor kid. He is such a trooper & he looked adorable at the doctor's office.
I love the swiming videos! AWESOME!
Poor little guy! Good luck feeding him! Mason wore the same blue "gown" thing at his GI! How cute!
Hey girl! You have to check out my blog. We should so go to this water park place together! It was the BEST!
So sorry to hear all that your little Hayden has had to go through this summer. How difficult to hear both bad news but smart that you decided to do the testing to catch it early. He is just too adorable!!
Just wanted to let you know about a couple resources as you engage in the battle with eos. 3 of my 4 kids have Eos. My 10yr old daughter has EGE, highly restricted diet, my 4yr old son has EGID, has been on a feeding tube for over a year with no food other than water and ice, and my 2yr old son subsists largely on the EO28 Splash formula, which is oh so tasty. Check out www.apfed.org and www.gardnerfoundation.org (that one is ours). We take our kids to Denver Children's Hospital to Dr. Glenn Furuta and Dr. Atkins, who are incredible, and two of the leading Docs on this disease in the world. It is tough, but know that you can get through this and, perhaps more importantly, that your darling son will be incredibly flexible. Little kids adapt quickly. You'll be surprised. God bless.
he is such a cutie. so sorry for the testing he had to go thru and the diagnosis for him, but happy you found out now!
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