"I love you but snap out of it!"

Nothing says "I love you but snap out of it!" like a pair of pink atomic midcentury lamps! My little sister stopped by today with these lamps that are so very much me! She said I needed something to cheer me up and get me focused on something else, i.e.: stop moping around. Thanks Jess! I needed that! I know I have totally been mopey and self loathing. It didn't help that I was super sick forever with the worst ear infection known to man! But really I'm done with the self pity (for a while) I promise:) Time to be pro active! Time to find a some lamp shades for these babies! 

I have started Sadie on a Mito Cocktail and we have decided that she will have to do another muscle biopsy in the summer to get clearer results. A muscle biopsy really isn't the hugest deal in the world but Sadie reacts so badly to the anesthesia. Every time she has to go under it sets her mobility back a month or so but this is the only way to get clear results on the type of mitochondria disorder she has. After our unsatisfactory appointment with the specialist, Sadie's neurologist got us in right away to discuss the mess up with the previous biopsy and helped us move forward. Thus our next step of the mito cocktail and plans of forgoing easier testing that won't give us clear results and going straight to the muscle biopsy again.  It won't be fun but getting answers will help us know what direction to go with treatment.

 I have always said that I will do anything to find answers and make sure I'm doing all I can for Sadie. I am starting to feel like I may not get very clear answers and I need to be okay with that. It's becoming hard to balance treatments, quality of life and then feeling at peace with my decisions.  I wish I could say this muscle biopsy will be our last hurrah and if we don't get answers well then "it is what it is" but..... I'm not so sure 'm there yet. 

Dear Uncertainty

Dear Uncertainty,
 I hate you. I was so sure I was rid of you once and for all but alas you seem to leech on to everything. Can you just for once let me have a moment of clarity!? Leave me alone! Go away!

Yours truly,
Nicki

 Attached to every single one of Sadie's tests there was uncertainty. The Mitochondria specialist said there was markers for mito in her muscle sample but it wasn't clear. He said she looked like a mito patient except she hasn't had enough permanent regression to fit the bill.  I'm a little tired of hearing from doctors that test results don't show much significance but looking at Sadie there are significant problems. The appointment wouldn't be half so frustrating if I hadn't gone through great lengths to make sure the results were clear. I couldn't even see this doctor without a final mitochondria diagnosis so when he spent half of our hour appt trying to find these unclear results it took everything in me not to throw a fist of misdirected rage into his stupid outdated computer. We don't really know we're to go from here, I don't think I want to put Sadie under the knife again for a muscle biopsy. You can read about her first muscle biopsy gone awry HERE. Let me make this clear, I do not want my daughter to have a mitochondria disorder! But it fits better then another diagnosis and there's precautions to take when dealing with this regressive disorder. The specialist is urging us to do further testing. Testing that insurance won't cover and has a 50% chance of giving UNCERTAIN results. He said that according to Sadie's history we might be looking at the 8% of mito patients that have Austism Mito but looking at her now, he's not sure about autism. We hear this from most doctors but spend an hour with my kid and you'll know she's quirky, spend hours treating her And you'll be pretty convinced, if you've known her her whole life you know without a shadow of a doubt that she had typical autism but three quarters of our life spent in therapies has helped in her case. Basically the better Sadie gets the harder it is to diagnose her. Gahhhh!!!! 

Tomorrow

Tomorrow is the day..... I'm so nervous. I have a million questions. My Mom is coming with us so she can take it in with Micah and I and so she can take Sadie out of the room so we can talk non censored with the doctor. Sadie is too smart and I don't want her to hear us talking about her family planning and what this means for Bro who most likely is a carrier or may be affected but on a much more moderate level. Everything is going to change, everything. 

Pretty Distractions: Sneak peek at the almost done therapy/blogging room

My useless giant formal dining room is transforming into a pretty little room where we can hang out, blog and have a place for ABA therapy. I still have some details to attend to but here is a little sneak peek....

Beeb's picks:

head in the clouds pillow from land of nod

nod institute art from land of nod

Oh and you know the saying "squeaky wheel gets the greece"? After my 25th call into the Mito specialists office they called back to give me a cancelled appointment next week!!!! I don't have to wait until May! 5 more days and I will have answers! I'm so nervous, after 6 years of wondering.....I have a feeling this is going to be a major game changer.....

Witty Words Wednesday

This has been cracking Beebs up all week!