Logen is DESPERATE for your prayers. Pray blog family, PLEASE pray. Just grab this code and add it to your blog (html gadget) so you can help us spread the word! Thanks! Pray for Logen

A sincere THANK YOU to all of you who have added this to your blog! And, to Anelys for creating such a cute blinkie!!

Saturday, April 24, 2010

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!!

Tuesday, April 20, 2010

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)

Sunday, April 18, 2010

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!

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