Logen Man Update

Logen is doing pretty good. He's not limping very much anymore. He will beable to swim (and resume pool therapy- his favorite form of therapy!) by the end of this week. He pulled his bandage off last week and his surgical site was still a little bloody and swollen so I just put a bandaide back on it. (There's a facebook picture on my mobile uploads).

We have seen an increase in seizures in the last month.

It's re-eval time again (OT). Speech was in May. PT is soon as well. On our IEP no progress was made during the school year. He has lost skills in OT as well as Speech in our private therapy evals. Just asking for prayers here. We are also strongly considering a change in schools. This was discussed in the last IEP meeting due to several injuries (quite a few unexplained ones) Logen came home with. All of this is another post in itself.

We won't have results from the skin or muscle biops for about 3 months. They will send the CSF results and the RMR results at the same time.

Dr. Shoffner sent me the clinic notes from the appointment and I will post the "important" ones soon.

I'm playing catch up on homework now (well, avoiding it actually).

Thank you all for the continued prayers.

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?!