Gluten Free Restaurants

GF has been a challenge, a BIG one. But, we keep going. I cannot imagine those that cannot have the stuff in shampoo and make-up. I've thrown away kitchen utensils/the toaster/cutting boards, etc (all b/c of cross contamination). I've found some great recipes. And we've eaten stuff I can assure you we'd never have tried if it weren't for this. It's got me back in the kitchen baking again. I finally got the Kitchenaid heavy duty mixer I've dreamed about for years as well! Haha.

It's comical to hear Parker ask other people if something is safe for him to eat or if it has wheat in it. I heard him ask his Dad if something he was cooking had "Glue-ten-nin in it". I couldn't resist laughing.

We are managing snacks and meals and we've even eaten out in public! Not that I completely trust the staff or anybody else to prepare my child's food... and believe me, when he gets Gluten- you can tell. We had an "up all night, sit on the toilet, cry fest not to long ago... the next day was really rough too" (And, no it wasn't even me crying... but I wanted to!)

Here are a few restaurants that have GF/Wheat Free menus. Most have some sort of liability waiver. I have linked their allergen menu's, click the names.

Fast Food
Chick-fil-A
Wendy's
Sonic (click for the allergen chart, they do not have a "gluten-free" menu)
Burger King (they have GF products, but they cook them w products containing gluten)

Sit Down
On The Border (The wait staff at our local OTB hasn't been the most knowledgeable, but the cook staff has been great!)
Chili's
Ruby Tuesdays
Carrabba's Italian Grill
Bonefish Grill
Boston's Gourmet Pizza
Carino's Italian Grill
O'Charley's
Olive Garden
P.F. Chang's (Menu, click Gluten Free)
Outback Steakhouse

Information About Mitochondrial Disease

Since I seem to have some "down time", I have added information in the side bars about Logen's "main" disease- Mitochondrial Disease. I plan on posting about What Mito is, etc soon. Just wanted to point out the links on the side.

Hospital Update

Swollen Hand/Arm from IV Infiltration
It' s been nearly a week, and I'm still (not) enjoying all the amentities of the hospital. Vomit. I feel worse than when I came in last Wednesday, no big surprise.

We've brought in a GI Doc. I did a small bowel study on Saturday. Endured "GoLytely" on Sunday and (at 25) had a colonoscopy yesterday. The only thing we found, is that the barium from the bowel study is still there, we will have to repeat the colonoscopy in a few weeks.

I developed a fever Saturday evening, it's low grade. It's still hanging around and all of my labs look normal. An Infection Control Specialist is coming in to see me today.

And, since "constipation/bowel issues" have been ruled out for the root of my abdominal pain, we've called OB. He should be in after hours tonight. GI thinks we should do another laperoscopy (my last was in 2005) b/c he could get a look at what he wants to.

It's been a heck of a stay! I've had 2 IVs infiltrate. It took 4 nurses and 10 sticks to get a new one started on Sunday and today 2 sticks so far, I still don't have one in- they are paging an ER nurse (I told them we aren't doing 10 sticks today, I refuse!). We made a formal complaint about the level of care/response time provided by the nurses, it's been horrible. The Director spoke with me this morning, and it's been better since.

Oh Hospital, Oh Hospital...

How I love thee... I hear that playing in my head by Larry the Cucumber from Veggie Tales to the tune of Oh Christmas Tree (That was our favorite Christmas CD this past year, one that got way to much radio time! haha)

Really, I'm not loving the hospital. I am however, back in it. For once it wasn't the Heart doctor (or the ER) that did the admit. Mr Kidney Dr did it. I went in yesterday with abdominal pain and swelling in my abdomen, feet, and ankles. Landed myself a lovely room on the 4th floor here. Trying to maintain my sanity... ;)

We've done several tests, labs, etc. Still waiting on my CT results. We found a "weird" infection in my urine (that wasn't in my urine when I was at the hospital Tuesday for my every 2 week blood/urine labs) that is resistant to oral antibiotics. So, currently I am on IV fluids and IV antibiotics. I tried to barter with my doctor to let me go home today, but it didn't work. We shall see how the next few days go! Sometimes it feels like I need to take stock in the local hospital, or just purchase myself a permanent room :p

Quickie Update

Logen: not tolerating his meds, keeps throwing them up. Not sure if he's just overloaded by all of them or what! Had his IEP this week and was pleasantly surprised. It went rather well. He's doing pretty good other than not keeping his meds down. Working on phasing out his gluten & dairy.

Parker: Doing very well off of Gluten. Seeing a marked difference! He's still fiesty & funny as ever :p

Jessica: I feel like I live in the Kidney Doc's office. Need to post about Cleveland, I know... I do have Renal Tubular Acidosis. We are all trying to deal with that. Heart Doc has referred me to Dr Natale in Austin, Tx. It's like playing "hot potato" with me! Nobody can figure out my heart, so they pass me along to somebody else.

Adam: Doing well, working like crazy (as always!)

Parker Funnies...

I try to remember to write these down, but... well... it doesn't happen. They usually get lost in my facebook status and I say I'll go back and write them down later. Here's a few funny things he's said recently.

* He walks into the dressing room and looks in the mirror and says "I sure am handsome!"

* Parker, what would you like for breakfast? "CAFFEINE"!

* "Tonight, we are going to sleep in the Oooo'tell! That's right!!" (oooo'tell = hotel)

* "I put all this crap in my train. I can't get it out." He put all the dirty laundry in the hotel room's closet this morning and referred to it as crap. I guess it was funny b/c it caught us off gaurd. Don't worry, we corrected it.

* Chick-fil-a is "Chick-A-Lay"

I'll think of more! He's quite the funny little boy, sarcastic, and whitty!!

Logen's April 2010 St Louis Appointments

We are Cleveland bound, so I thought now would be a good time to update on yesterday's appointments. We were at the hospital ALL DAY LONG! By the end of it, we were all extremely cranky and no fun to be around.

Epilepsy Appt:

Needs to do another 2-3 night stay in the hospital for a video EEG. His last one (was in Sept 2009 & was only 30 mins) didn't show seizure activity, just a lot of "spikes"/abnormal brain activity. His activity occured mostly in the right side of the brain and all over (multifocal). His doc is thinking he may have a condition were his seizures occur mainly at night (or when he is sleeping). We know his brain activity is much different when he is sleeping from his hospital stay in Dec '08. I cannot remember what they called it then, it'd have to go sift through papers. So, the decision was to stay on his current seizure treatment plan. (Topamax twice daily, Klonopin PRN, and Diastat PRN)

Neuro Appt:

1) We have no more information on Logen's "disease" than we did on our last trip- besides knowing what it's not. His mitochondria do not function normally, the area's we know for sure aren't normal are "Complex 1 & Complex 3". On every genetic test we do with the Mitochondria (ex. mtDNA), everything comes back normal. We know he has "type 2 muscle atrophy". We do not know what has caused any of this (hince negative mito genetic tests). Any positive test could possibly give us things like a prognosis (what every parent wants). Advances in Mito Medicine are incessantly being made, so we are very hopeful.

2) Many medicinal changes:

A) Moving to the "liposomal Ubiquinol form" of his CoQ10 (in the Mito cocktail). It's suppose to absorb into the body better and be a more "active form".

B) Start a Pyridoxal Phosphate. It's a derivative of B6. However, this has proven to help with seizures. And, it's "natural"- so why not try it?

C) Try Papaya Enzymes for drooling. Since Logen's swallowing function seems to be declining, we want to limit the possibility of his aspirating his own secretions. Dr B wants us to try a natural supplement before we look into Rx meds.

D) Start probiotics (Dr B recommends "Gut Buddies" from Epic4Health, they are the company that makes the FDA approved Mito Supplements) & ground flax seed.

3) Switch Logen to dairy free supplements. Oh, this will be the most difficult change. Parker is already on a dairy free diet (for the most part), so knowing what to cook, etc isn't going to be to bad. Mr Logen is a dairy freak! He is a lover of yogurt, pudding, ice cream, etc. All of which can be bought dairy free (thankfully!). It's just going to be training him he can't have those things, or they need to be ingested in very small amounts.

Extra Stuff : We did a hip x-ray, labs to check for B-12 deficiency, serum ferritin, CBC with diff, etc, had another EKG to check for conduction defects (worried about his blue toes/hands)

BIG Medical Trip!

Today begins another one of our "medical trips". I sit in our "home" in St Louis listening to the boys wrestle on the bed next to me, as much as I hate to say this- it's becoming one of those noises a mom (this mom) doesn't hear anymore.

*~* Logen's Trip *~*
We see our Neuro & Epilepsy Doc's tomorrow @ St Louis Children's Hospital (Monday, April 19).
We are SO SUPER anxious for this! We have SOOOO much to talk about. And, we want answers. We still don't have all of the answers from his surgery in July 2009!!!!

In the last few months we have seen some decline. He's had good days and bad days. I feel this deserves a complete blog entry, especially after his last swallow study. I will work on this tonight- b/c I must type up our concerns for the doc's tomorrow.

*~*~* Jessica's Trip *~*~*

I have 2 appointments at Cleveland Clinic this week.

My Cardio Team (Electrophysiologst & Cardiologist) set me up at the Cleveland Heart Clinic on Wednesday 4/21 (a 7:30am appt (Registration), 7:45 the EP Clinician and finally at 8:15, Dr Bruce Lindsay. Don't you know 2 happy little boys will be loving their parents for this one?! haha)

My Nephrologist (kidney specialist) set me up for more testing with the Nephro group at Cleveland Clinic (he said they were some of the best!) on Thursday April 22. Reason for this is possible distal RTA (distal renal tubular acidosis). Heart doctor mentioned something about blood cancer when I saw him April 14th.

So, we will pray for the best!! It's going to be a busy week and hopefully we can add some fun to it while we are out! We looked up several fun things to do with kids in Cleveland. The only thing we dread is the 16 hour drive home. Bummer...

Will update after Logen's appointment tomorrow. Please say prayers for the little man!

Picture Update

What a busy year so far! Here are a few pics to update...

I have some wonderful snow pictures of the boys, I hope to get those off the camera by summer time :)

The boys are wearing the jerseys their Aunt Hannah sent from school. They love them!
Parker got a bike for his 3rd birthday and loves it!
A few pics from Hannah's (my little sis) Debutaunte Ball in Dec 2009.
Adam & I
Hannah & Dad
My sisters & I dancing with Dad
Will, Adam & Dad goofing off
Logen at school.

Just Sad Today...

I've been a horrible blogger! Perhaps I need a place to vent again. It just seems like the only news we're getting (or I am getting) is negative and I can't see sharing negativeness with the rest of you.

I will. I (and the family) need some more prayers.

My heart procedure was an 11 hour thing, I was awake for 8 of it. I thought childbirth was bad, then my boob job was the worst pain ever. I am telling you- that procedure was the most painful thing I have ever been through. After the 8th hour when it was "decision time" I just begged to be knocked out. I made it awake much longer than I thought I would. The team was amazing at keeping my mind occupied or rubbing a hand or foot. We got rid of the nerve going to the sinus node of the heart and they also ablated some areas near the atrial node inside the heart.

We were so hopeful it would work, but so far it's not done much more than keep my heart rate below 170. Which, is an improvement b/c it would get to 216. The last 2 weeks has probably been the worst. We've changed my heart meds about 5 times (the pharamacy loves me. haha!). My blood pressure dropped so low last weekend that I couldn't get out of bed w/o blacking out. It was scary. I go in for another holter monitor on Wednesday. I am praying we can find something that works.

Last June (2009) I had a CT scan for my circulation- my toes like to turn blue. Weird things! Something in my R femur showed up. So, we did an xray. The radiologist called and wanted an MRI immediately. It was scheduled and I didn't go b/c, honestly, I just didn't want to. I figured it was no biggie and we'd do it later- let's fix the heart first. So, when I went back in to see my internist she kinda fussed at me. In Nov I did the MRI and we found 3 lytic lesions (The orthopedic doc says they are holes) in the femur. If I had a copy of the MRI I would post it. I need to get it.

So, today I went to the Nephrologist (Kidney dr) b/c the ct from Nov (we did a CT and an MRI in Nov) showed a "milk of calcium" deposit and several kidney stones (this is my 2nd time to get several stones in each kidney this year).

Today is what has me sad. The kidney guy said that the kidneys could be pulling the Ca out of my bones and depositing into my kidneys, causing holes in my bones- the right femur is the only one we've MRI'd. It's called "Brown Tumors". We discussed things with the parathyroid gland as well. I googled it. Should not have.

My list of Dr's is growing to be as long as Logen's at this point. The Dr today agreed in saying "you have multiple systems failing you, some of it has to be related". I am so glad that somebody agreed with me on that. He actually said it before I asked about it.

I am just not sure how to handle all of this. I am trying to stay positive. Now, it's just kind of like "really?". I love it when the doc says "this is rare" (as the bone, heart, and now kidney guys all tell me). I have to laugh and say "thats what the ___ doc said to. I must be rare!" haha!

So, anyway... as this crazyness all unravels we just need some prayers. Thanks :) It's putting strain on us all. I will try to be a more faithful blogger!