Before & After

Before:

After:

Where's my little boy? :(

"Cheese"

I'm sure that's what my esophagus said when it got its picture taken today.

For at least 20 years I've had problems swallowing. I've mentioned it here before... Anyway, Ifinally decided to see a GI about it and I ended up having a scope done today. The worst part was getting and IV and having to gargle Lidocaine. Yummy.

Anyway, it turns out I have a Hiatal Hernia, which means:

the upper portion of the stomach protrudes into the chest cavity through an opening of the diaphragm called the esophageal hiatus. This opening usually is large enough to accommodate the esophagus alone. With weakening and enlargement however, the opening (or herniation) can allow upward passage or even entrapment of the upper stomach above the diaphragm. (Thank you Emedicine Health for the definition!)

So this causes acid reflux and acid reflux left untreated can cause narrowing of the esophagus. That's what ended up happening so the surgeon stretched my esophagus to keep me from having trouble swallowing & getting food and WATER stuck in my throat all the time. Basically the treatment for now is to start taking Prilosec(and continue to take Prilosec for quite a few more decades) to keep the reflux from damaging my esophagus again. If the Prilosec doesn't help then there are other options but let's pretend there's no chance of that and that the meds will help because while having yet another person in our family have to take drugs daily is annoying it's much better than a Nissen Fundoplication which is basically a long word for tying your stomach in a knot to prevent reflux.

My throat and stomach have been burning all day but it's not been too bad and it will all be worth it if I can get through meals without having to excuse myself to vomit! Yippee!

Awesome!

We've been talking for quite a while about getting central air. For a while it would've just been a nice luxury and now it's more of something we can't really live with out. Or at least Emeric can't. Because of his autonomic dysfunction he does not tolerate the heat well. He gets overheated extremely easily and cannot sweat. Today his nurse was bringing him home and it was about 55 out today so warmer than it's been. She said he cried the whole way home and when she brought him in the house his face was beat red and super hot. His temp was 100.

I've been praying for months that somehow, in some way we would be able to afford air conditioning. Without a huge savings account and with a van dying a slow death it was highly unlikely we'd ever be able to afford it. I also found out that the price of getting central air had gone up quite a bit since we'd checked into it 3 years ago.

Anyway, I ended up getting a call today and it turns out we had been underpaid in funds we qualified for with Emeric's disability and we will be getting a check in the mail that will cover 75% of the cost of the air conditioning!! I am amazed at how God answers prayer!

Home from St. Paul & lots of pictures

I left yesterday with my MIL and the girls to head to St. Paul for Emeric's appt. with the Epileptologist. We went to the Mall of America and the kids were able to go on a few rides which they enjoyed. We then headed to our hotel for pizza and swimming.

I left the kids with Jake's mom this morning at the hotel and drove to Emeric's appt. We're raising Emeric's seizure meds again to account for weight gain and try to fully control those few breakthrough seizures. The Epileptologist discussed possibly putting him on another seizure medication at night that would clean up what he calls an "angry" EEG during sleep. Meaning he has a lot of abnormal activity during sleep that could be accounting for his lack of energy during the day. He seems to think if he's not getting well rested it would make sense that he's tired all the time. For now we're holding off though and he wants me to call in 3 months and let him know how Emeric is doing. He is concerned about his development on the Topamax and the fact that while he's making slow progress he's falling further and further behind. If his development starts suffering too much more he'll have to be taken off the Topamax but we're hoping that doesn't happen b/c the Topamax has been very good for him so far seizure wise.

Emeric also does not have reflexes anymore except for very slight reflexes in his arms. Apparently this can indicate neuropathy and there was discussion about trialing an experimental med sometime in the future if things start progressing in this area & also in terms of the ataxia(wobbly, unbalanced gait).

Emeric will start on Omega 3 Fatty Acids, B-Complex vitamins, and Folic Acid. We go back in 6 months for another short EEG and hopefully we'll see improvement until then!

Oh, we also happened to run into a woman I met online!! She's the one actually who referred me to this doctor and it was great to finally meet her and her son after "knowing her" online for quite a while now!! :) You can visit Reese's caringbridge site at http://www.caringbridge.org/visit/reesejohnson

And some pictures:

The girls were very tired of the car ride. And yes, I see Kylie's carseat is tipping over. LOL

Kylie and her friend Katlyn at Awana Olympics. They got 2nd place out of two teams! :) The Fargo teams could not come because of the flooding.

And of course I couldn't resist taking a picture for Stellan's name gallery in front of the Mall of America. It was so windy that I see I cut off part of the word and his name is light but since I'm not hyper-critical there's really not even any need to mention it! :)

Emeric's new ride

Emeric got his stroller today. He loves it & rode in it for a long time while Kylie pushed him around the house. It comes with a removable tray which I didn't feel like we needed and they convinced me to get and now I'm glad. It will be nice in terms of keeping him occupied.
It folds down pretty compact too!

A smattering of pictures

Kylie holding our friends new baby.

Our dog, Lola, with a yogurt container stuck on her nose. She's real smart.

Kaydence, broken out in hives AGAIN for no obvious reason. Nevermind the fact that she's on allergy meds daily and should not be breaking out in hives.

Notice Emeric's red, flushed face? That's the autonomic dysfunction. It's super hot to the touch. He's sick again and it's always worse then.

Stellan's Story

I think most people who read my blog know who Stellan is by now but in case you don't, visit http://www.mycharmingkids.net to find out.

A story was done by the Minneapolis news last night on their family. You can watch it here: http://kstp.com/news/stories/s859209.shtml