When it Rains, it Pours...

I'm starting to think there is a target on me.

Tues. we had our appt. with our neurosurgeon.

MRI showed that ventricles are smaller & his brain has "fluffed out" a bit more. I was bragging to the Dr. that Little Man can sit for 1 min. unsupported once I put him in "position" and another inch stone, he is beginning to pull & drag his body across a mat. This is huge progress in my world.

 Lest I get the chance to boast he then says that his head & brain are small which means he has microcephaly and what was that Little Man just did? That thing he did with his arm & head? I say its just how he gets his balance when he loses it. (he was sitting on the table, me next to him, supporting his hips- he was just bobbing his now too small head) Oh, I thought that might be a seizure. So I ask the good Dr. if I should set up an appointment with the neurologist & have it investigated. His answer was no, not if you don't think so.

On the ride home, radiology calls to tell me that I need to be there on Wed. at 6am for his sedation for his CT scan. I at least had the sense of mind to pull over on I-35 before reading her the Riot Act. She insisted that he needed sedation due to his age & that all sedation was done early- at 6AM. I insisted that he did not need sedation due to his disability and that I would not be there at 6AM. Why? Because I am 2 hours north, please, dear radiology department, please do not assume that everyone who goes to Cooks lives in Tarrent County. A 6 am arrival time means I leave my house at 4AM & wake up my neighbor to watch Capt. Chaos & that 'aint happening. For crying out loud our surgery arrival time was 7 am!

She said she understood & would work with me on the time but he still needed sedation. My Riot Act continued. I told her flat out that as much as it would make my heart sing for him to jump up off the table & run out of the room it was not going happen. My exact words were "Hypotonic Spastic Quads are not known for their mobility skills, we just got back from Cooks were he had an un-sedated MRI & those machines are loud!!!!"

Silence

"Can you be here around 8AM?"

"yes & thank you & I'm sorry I yelled at you"

I go home, look up "microcephaly" on google, then proceed to watch approximately 4 hours of you tube videos of kids having seizures trying to see Little Man in any of them. I then cried myself to sleep.

On Wed. I wake up & head out to Cooks for his CT & last appt. with the cranio-facial surgeon. I go over the overpass, turn onto I-35 & hear a thunk & horrible grinding & crunching noises;coming from my right front tire.

Fantastic.

I pull over & get out. At least the tire is still on. So I slowly make my way to a gas station & start calling people. Radiology understands (I'm thinking there is a big sticky note in my file that says I'm screamer, they were unusually friendly & accommodating). I get a hold of our Dr. & leave a message. Then I get a call from Hubby, who is in CA working. I tell him what happened. He's not happy.

Eventually, my father in law comes to get us & a wrecker comes to get the truck. I have a talk with the surgeon & tell him to whole sad tale & that I'm having second thoughts on this whole surgery. I'm not finding any peace with it. He understands & says what I'm feeling is normal. I think that's the first time I heard that word since Little Man was born.

Later that nite, I'm talking this whole thing over with Hubby & he agrees that we should post phone the surgery. We are still not sure if we are helping him or putting too much at risk. I call back the surgeon & leave a message saying we were cancelling the surgery on Mon. & when would you like to see Little Man next?

Here's where it gets fuzzy. I never heard back from him. I called on Wed, Thurs, & Fri. & left messages with both doctors & have yet to hear back from them. The voice mail message said all Dr.s were out of the office for an educational conference on Fri. but I thought for sure I would hear back from someone regarding the cancellation of a major surgery. I'm starting to think I did something very very wrong:(

So to re-cap:

-MRI looks good, but his brain is still bad & we might be dealing with seizures. 

-Cancelled surgery but still not sure if I did the right thing.

And the cherry on top of all this?

Insurance has denied our claim for a wheelchair, for the second time.

Sheesh, I feel like I can't catch a break.