Tuesday, September 20, 2011

Second Opinion - Sorta

Neil and I chose to NOT get a second opinion because unless the lab got his MRI and the blood mixed up, it's pretty much all there in black and white. It's been easy to forget (haha, yeah right) but easy to forget that he's so sick when he's so healthy right now. And when I say healthy, I am comparing him not to a "normal" boy, but a boy with mito.

We received some follow up paperwork from the Stanford trial, Dr. Enns formal write up. It's sure hard to read it again, all spelled out in black and white.
"...homoplasmic mutation at 9176T>C in ATP6 (mitochondrial respiratory chain complex V)...."
"...MRI showed lesions in the basal ganglia. Low density was noted within the caudate heads bilaterally and the left putamen..."
"...because Leigh syndrome is a progressive neurometabolic disorder that is characterized by necrotizing lesions, particularly in the basal ganglia, midbrain and brainstem, children are at severe risk for rapid progression..."

(I had to google a lot of his three page letter.)

Ew. Ick. Just brings you back to the first few days. I remember clinging to my mom, crying and telling her I can't and won't do all this and how on earth is it possible to handle this. Well, here we are 10 weeks into our new life. I still don't know how to do this, but as our therapists says, "Your heart will expand and you'll be amazed at what your capable of."

Hey God, the size of my heart was just fine thank you very much. You could have just given us a healthy baby boy! But who am I to judge that.

There have been a couple of distinct "phases" I remember about Will's short little life so far. Sidenote: I have the first 22 months captured in a 15 page word document with one thumbnail photo of him per month. It's come in handy with all these doctors who want to spend 2 hours gathering medical history. I just hand them the document and then enjoy a little laugh while they look at me like I'm crazy. Let's look for some efficiencies in this process huh guys? I already know I'm crazy, so let's move past that and get to business. ( I don't know why this is highlighting in white and I am too tired to try and fix it.)  

Anyways, back to the point:

-Birth to about 11 months - ignorant bliss. I look back and laugh thinking about how worried I was when he drank 2 ounces less than he did the previous day. Ha! And how I was a little squirrel trying to pump and make sure we had a certain amount of milk in the freezer.

-12 months to 15 months - worry, but not really worried. Will's a big kid and we all know late walkers.

-15 months - 2 years old - worry, wonder, fear of the unknown. (Above picture is Will wearing his SPIO suit and first pair of leg braces.)

-July 5 - The known. The second worst day of my entire life. The first has yet to come. Neil and I dropped him off at school so we could lay in bed and cry. He came home wearing some funky mismatched clothes, but we didn't much care.

-Now - coping, dealing with our new reality and trying to have some fun (and not fall in the water, at least not deep water)

Tuesday's Mito takeaway: Did you send your email yet? Look at all the fun pictures you could show someone? :-)


  1. Lori,
    I just wanted to tell you that I "liked" the UMDF on Facebook and slightly modified your email so I could post it on Facebook to my "public." I thought it would reach people better that way. Are you going to parent night tomorrow night? For the first time ever, I'll miss it :( Oak Forest Elementary has their first PTA meeting scheduled for that night. I'm bummed, but I don't want to pay a babysitter so Michael can go to one and I can go to the other. I saw Will yesterday when I picked VIncent up. He was doing water work at the table and he looked so cute with his smock on. I said hi to him and asked him if he went to California and stayed in a hotel. He looked at me and said "yeah" with a look that was like "umm, how do you know lady?" He is such a precious peanut. I am thinking of you guys all the time and making wishes for the best possible outcomes. Big hugs!

  2. Beth, I so missed seeing you at Parent Night! I saw Vincent's art work - really awesome! I hope Oak Forest is going well. That is hilarious about Will with the hotel. He still talks about the hotel. Hugs back to you too. Lori