Log was averaging a seizure an hour earlier today. We admin. Emergency meds and it seems to be better. This weekend he had an increase in seizures as well.

Idiot Geneticist

Here's the re-cap from our April 10 appt.

This guy is an idiot. I will be writing to whoever I need to about this ding bat.
We walked in pretending we knew nothing more than at our last appt with "Idiot" (my nickname for him) in January. We asked him what his next step would be in finding a Dx for Logen. He said a blood test for Mitochondrial "stuff". We said ok, explain. He blah, blah, blahed. We half listened- already hearing the cons and pros of the biopsy and blood testing from Dr B in St Louis. And, as you all know by now- we trust StL with everything b/c they haven't screwed up.

So, interesting part happens. He says this is the LAST step for Logen. IF this blood work comes back normal, then we are done. There is no more testing. This is it, end of the road.

I sat up and said, "Well Dr Idiot- Have you heard of Dr Shoffner?"
Dr Idiot: Hmmm. Yes. (puzzled look. crap! How do you know about him?!)
Me: Would you consider sending Logen to him for a muscle biopsy?
Dr Idiot: Well, I don't really think that would be necessary if the blood work is normal
Me: From what I have been told and researched myself, the blood tests can be wrong. I think it would be best to get accurate results so we can begin treatment, if possible.
Dr Idiot: (Another oh crap look! This mom may actually know what she's talking about. And, he just sits there like a big dufus.)

I'm not kidding- he wraps it up by TELLING me we will draw the labs and he will see us soon. I'm like, uh- WHAT?! I went ahead with the labs, b/c IF they show something- then, ok- we may have an answer sooner (7-8 weeks). But, I really DOUBT we drive 4 hours to see this guy again. Horrible. And, how can you tell a family that this is the end of the road for them? It's obviously NOT. Had we not had the knowledge we do and not been to StL, then we wouldn't have known about Shoffner. There are other familes out there trusting this man. And, I feel he's incompetant. He was arrogant. He walked in saying he was the best there is. And, he is clearly NOT. He told us this the last time we saw him as well. I should have taken Logen and ran quickly then, but I gave him a 2nd chance.

So, there's part one of drama from those appts. Crap! Total Crap. I'm going to bed now. I'll be back soon!

PS: the short 1-2 line posts are via text. Thats why they are short. :)

It's going to be one of those "up all night" cram sessions. Yay me.
Logen's had some funky stuff today, "new" seizure activity as well. Will update soon.

OMG! Why are medical insurance companies a PITA?! And STUPID?!?! AGGGGGGGGGG

Blogger Un-Motivated

So many things going on right now. I have no desire to blog. I used to love blogging. It was a great way to 'release' my emotions.

There are many things going on with Logen that I can't say here. Just pray.
There's stuff I am struggling with.

2 of my friends have been diagnosed with cancer.

Danielle has been diagnosed with type 1 cervical cancer. She has 2 small children. Please pray.
Fallon has been diagnosed with type 3 cervical cancer. She recently lost a set of twins. She has a young daughter. The outlook is not good. Pray for her, please.

It just seems like there are so many negative things going on around me. I can't seem to pick myself up. Just keep on praying for our family, please.

Another Family Loss

We've had alot going on in the last weeks. We had a few appts last Friday (April 10th) at Children's (not St Louis, our "local" 4 hour away hosp). So, we decided we would take the weekend to spend with my family- who lives about an hour away.

Thursday night (our 5th anniversary) was hell. The entire drive was literally spent driving through hail and dodging tornados. We spent Friday night with my Grandma and Grandpa. Saturday we headed to Dad's. I got a call I missed from him on our way.Then a text from my big sis who said to come there b/c Dad & Liz had left. Long story short- my Uncle died. He was dx'd with lung cancer over spring break (about 2 weeks ago). He had begun chemo and radiation.

My Uncle left behind a young daughter, Dawn. My Dad & Liz have legal guardianship over her.

Dawn NEEDS your prayers. She seems to be ok, but my littlest sis said she's good at putting on a "show". D lost her mother in January (she was shot). And, now her father. D's life has been full of tragedy. Her mother used to do some pretty bad things, such as locking her in monkey cages. I just ask that you say some prayers for this sweet child.

We had to drive back on Sunday after church b/c Adam had to work- he's not getting paid for the time off, so it's been a challenge. I drove back down Wednesday morning, attended the funeral and drove home. Let me tell you that 8+ hours in a car and a funeral in 1 day is very difficult. I didn't get home until after 1:30am.

My Aunt Pam was at the funeral (she was the aunt that lost her spouse {Uncle Stevie} in Sept). She hugged my sisters and I am said, "It's just not fair you girls have had to lose 2 uncles like this in such a short time." And, she nearly lost it. Brings back memories. It's still not settled that Uncle Stevie is gone.

My Dad caught me in the kitchen alone that Saturday night after Clark passed. He said, "Aren't you glad you aren't here for my funeral?" I looked at my dad like WTH? Did you relly say that. Then he continued with "you all will not need to cry and grieve for me when I'm gone b/c I will be with the Lord. Very happy." I am still bothered by this.

I will update on Logen's appts last week and the rest of our lives. I have figured out how to update from my phone (using text, so my character limit is 160). I think I will add twitter.

Continue prayers for Logen as well. He's been throwing up his pediasure this week. Not good.

Testing x 2

Testing!

Busy, Busy!

I am working on putting together a flyer for Logen. Putting his 5 years of life (and testing) into 2 paragraphs isn't an easy task. I have to get this done asap so we can begin with posting them/handing out!

I will go to banks tomorrow to set up a donation account. I am also going to talk to our tax lady. A few Wal-Mart vendors told us they need a tax ID number inorder to make donations (of either product or of monetary value)

I will be setting up a blog for just Logen. I am still going to keep my blog up to date. I will most likely post the same here an there, but will keep the emotions at bay on his blog. It will be factual. It will be the site listed on the flyers, where people that are interested can go to learn more about my little man.

I'm not dropping any classes. I've had many papers due in the last week and it's really hard to get done. I'm not on the "school track" right now. I haven't gone to one class since before St Louis, and I will email tomorrow and beg for forgiveness. I know this is bad.

Parker was sick (and I am not 100% convinced it's gone). I took him to the Dr yesterday, by the time we got there his temp was 104.3! We did a flu swab and a strep swab- both negative. His ears looked ok, but Parker kept jerking so he wasn't sure they weren't a little infected. The Dr gave him an antibiotic- he's not had a temp since a few hours after starting it, so maybe it was something bacterial?!

Logen doesn't have the flu anymore, but he's still snotty. Maybe it's allergies (or sinus stuff). He's not eating. I mean, way worse than he was with just the Keppra. He's now on 2 meds with decreased appetite, so this is to be expeted. I can't wait for him to be off the Keppra completely. The Topamax seems to be doing the job, unless we are in the honey-moon phase. Keep your fingers crossed!!!!

Working on getting medical records gathered.

Logen goes in for his thyroid labs Thursday.

We head to our local children's hosp (4 hours south) Thursday night after Adam gets off work (Also our 5 year Anniversary!) Logen sees the Endocrinologist and geneticist. I do not think we will learn anything, I have not heard vry many good things about the E, however we have had the appt since the beginning of Decemeber- so we are going to go.

Thank you guys for your continued prayers!! We are so blessed!