Stopped in Tupelo, Miss at 230am for rest. Finally back on the road! Saw lovely green astroturf for a driveway. Made me laugh.

We are driving to Georgia. Heading out now to break up the drive into 2 days. Keep us in your prayers! Will update frequently :D

Confirmed!

The Surgeon has confirmed our spot next week! So, WE ARE ON for Atlanta and seeing Dr Shoffner! I am thrilled ya'll! I can't wait for results. I know, 3 months away... but- maybe some answers, FINALLY!

I was on the phone all day yesterday trying to contact people regarding flights, etc. This is really starting to stress me out :-O However, I am sooooo ready to have this done!

I have started Logen his own blog... there is nothing on it yet. I hope to copy over any post regarding him from my blog to his by tomorrow. I will also update along our trip. The main purpose of his blog is for the companies that have asked for more information before they will make donations. I'm not sure how I will keep up with all of these blogs ;)

At this point, I am working with Angel Flights trying to get Logen and I out there free. They won't fly more than I passenger with the patient. And, since it's a holiday weekend next week- it's looking doubtful. But, worth a try. If not, I'm not sure what we will do, as the flight prices keep going up.

Say prayers for our sanity! I called lotsa family members last night for a very detailed family history! Holy Smokes! I didn't know how many heart conditions we had. And "child birth" problems. I got my issues from both sides of my family. I feel blessed to have been able to have 2 kids after hearing it.

ATLANTA HERE WE COME! :)

Atlanta Appt (Dr Shoffner) Scheduled!

Oh boy! We've been so stinkin' busy. I have this week and next week left of 3 classes a day, then 5 weeks of just 2 classes. That will feel like a breeze after this craziness! :p

Sooo... His appt with Dr Shoffner (the Neurogenetics specialist) has been scheduled for July 1 and 2. The only hold up at this point is they can't confirm until about Friday. Which will leave me about 3 days to book flights, rental car, and a hotel AND get to Atlanta! Kinda, just a little bit, Stressful!

Where the funding for said things will come from it beyond me. We've been slowly gathering stuff, but I haven't had a break in school long enough to pull a fundraiser together.

The Doc has reviewed just half of his records and defininately wants to see Logen. Here is what we will be looking at (the list could change):
Diagnostic Testing for Mitochondrial Disease
* Blood for mtDNA (PCR and Southern)
* Blood and CSF for Lactate and Pyruvate, or Brain MR Spectroscopy (we are doing the spinal tap at this point)
* Urine Organic Acids (by GC/MS)
* Plasma and Urine Amino Acids Blood and Urine Carnitine
* Brain MRI (He's had 2. 1 was abnormal, 1 was normal. You're guess is as good as ours on this)
* Muscle Biopsy (they will be removing a 1 by 1 piece from the top of his leg) and Skin Biopsy, Neuropathology and Electron Microscopy, Mitochondrial Electron Transport Studies, Fresh (coupled) mitochondrial Polarography
* Resting Metabolic Rate Study

{We've been told by the Neuro that all of my cardiovascular issues can be something related to Logen. It can just now be showing up as "adult onset" in me. If Logen does test positive, I belive I would be tested as well as Parker and possibly Adam- the reason Adam may not be has to do with the way the mitochondria are passed on. I'm not sure what would be a good thing here. We just want answers for everything thats happening, medically, that no doctor has been able to explain!}

Another hang up is travel on the 4th. I'm a little afraid to fly on that holiday. Call me crazy! ;-) I'm excited about this and want to get the testing done ASAP bc the results will take around 3 months to come back. Rrrrr! I hope it all works out and we can get it done next week. I am going to contact Angel Flights and see what they can do as well. Tickets from here to there are around 900 bucks a person! Driving time is about 13 hours if we just drove without stops or traffic. I hear other parents laughing out there! Like that would ever happen, 'eh?!

Help Please :)

I need to make Logen a webpage for his "stuff". (AND QUICKLY!) We've had some offers to help with his medical things, but I don't want to direct them here b/c I have to much of my stuff on our blog. So, I want a website for him. I was trying to stay away from a blogspot account b/c it has a lengthy addy--- anybody have a suggestion?!

Thanks :)

Teaser Pics

I have several pictures to upload here. I mean LOTS! And, since I have a fairly large homework assignment due in 3 hours and I'm not half way done, what better thing to do that upload a few pictures!

Mr Logen in his Easter outfit (with my Dad's dog, Buddy)
Mr Parker in his Easter outfit (He's thrilled, you can't tell?!)

Prayers Tomorrow, Please!

I suppose this one is to be more of a vent. Or a prayer request. I'm just not sure.

We changed my heart meds last week b/c one of the medications. I'm on med 3 and nothing has brought my levels under 100 for an extended period of time or gotten rid of all the lovely things (like allowing me to walk without becoming winded!) like it should. My feet and hands have started tingling and feeling numb. My toes also started turning a lovely shade or purply-blue. The blue thing has happened on several other occasions and when I asked another doc about it, she'd said it was fine. FINE??! Blue toes aren't fine....

So, when I called my EP the nurse said, "come on in now". I went in, the doc looked at my toes- saw that they are blue and ordered an ABI to be done then. The 'people' came in and did my ABI (which hurt in one leg... as she warned. You wouldn't think just taking a pressure would be painful). I'm cutting out details here as I have a homework assignment due in a few hours. I was sent to check out and be on my way- they were going to call with the results.

I kinda freaked when the nurse caught up with me and said "I'm glad I caught you, we are trying to get your insurance to pre-auth a MRI and MRA now, can you just sit in the waiting room?" Um... ok. Flip out. So, I sat there and text my mom and was to the point on little water droplets in my eyes. The nurse came back out and just had me come back there b/c one of the nurses had the insurance on the phone and one had central scheduling on the line. My ABI ended up being .94 and 1.00. I was told that anything below 1 is abnormal. Anything below .95 is "significant narrowing of one or more veins in one or both legs." My Doc spoke with another Doc while I was there, we didn't get the test scheduled for that day b/c it's a 3 to 4 hour deal. And, the machine wasn't open. So, I go in at 2pm tomorrow.

Conclusion: the blood is not circulating to (and through) my legs/feet like it should be. We are going to figure out why. So, Dr B says. This can be related to my heart thing or not. We don't know.

I do NOT fit in the "approriate categories for any of this stuff. I am young, never smoked, I don't do drugs, or drink (well... not like they are talking!), my BMI is perfect... it just doesn't add up. And, my Doc says that. "This happens to 80 year olds, not people like you". Yes... he said that!

Anyway... I get to be in a tiny space for a while tomorrow and I'm just a little concerned about everything going on. So, please keep our family in your prayers. I had a test today and yesterday. And, still working on all of Logen's stuff. And, it's just really overwhelming!!!!

Back In School We All Go

If you didn't already know- I'm in summer school. I'm trying to "bust out" 9 credit hours in 5 weeks. I have 4 weeks left. I wake up around 4:30 am and leave my house by 6:15. I'm done with class around 2 pm each day. I get to see my kids by 3:30ish. And by about 4 pm, I'm about exhausted and can't think straight. Please don't attempt to get me to remember anything important between the hours of 4 pm and bedtime b/c I don't remember it.

Logen is also in "Extended year session" aka summer school until July 2.
Parker has returned to a new daycare (he was 'removed' from the other... can't remember if I blogged this?!) and is doing well. They put him in with the older kiddos and his speech is improving. He's minding his manners nicely! Now, when he comes home.... oh, thats a different story. But, the poor little guy has to get up so early- so we cut the boys some slack there.

I am taking Exercise Physiology, Seminar of Exercise Science, and Motor Development. I had my first test at 7:30 this morning. I have another test tomorrow in another course.

I've been having some circulation issues as well as trouble catching my breath- so my doc has changed my heart meds. I'm actually starting to really worry!