Wednesday, June 24, 2009

I feel like I'm gasping for air lately ...

Like I don't have time to take a deep breath and BE. There is so much going on and so much to think about and so much to plan.

First off, the VCUG yesterday was better than in the past. The tech got the catheter in on the first try, which was good because I told her she only got one try and then I was taking over. LOL They filled her bladder with 240ml of fluid. I have never gotten out more than 130ml I believe? She was clearly uncomfortable and quickly started screaming and retching. The good news is that there wasn't any kidney reflux. The bladder held "a good amount" according to the doctor, not too much or too little. He told me that when they opened the end of the catheter, she would urinate and release the pressure that was obviously distressing her. She didn't pee. They poured warm water over her genitals, still no pee. He asked what normally happens during VCUG's. I said "She screams endlessly until you drain her bladder" and he said "Empty her bladder and get her back up in her mommy's arms". Thank goodness for decent doctors! It was obvious that when the bladder got full and irritated, it simply clamped shut and was not going to release urine. The only icky part of the day was that the fluid drained out very pink, when it was put in clear. I haven't seen any other signs of bleeding since then, so I think the bladder was just really irritated with being that full.

Skipping subjects for a minute, I want to type a bit about the incredible convention Peanut and I went to last week. It was AMAZING to be surrounded by parents and children with microcephaly and such SIMILAR disabilities and abilities and personalities as mine!

We met with some top-notch doctors from all around the country. Harvard University, Washington University in St. Louise, and University of Chicago Medical Center. They reviewed all of her MRI films, EEG results, and then did a physical examination.

They explained to me that her microcephaly is not one that has a know genetic cause. There is no name for the type of microcephaly she has. They took DNA samples from her and I to put into some research studies on microcephaly. They did tell me that her forebrain is far more affected than the rear of the brain. They showed me this on the MRI and once they explained it to me, it was very obvious. Also she has hypoplasia of the corpus callosum. It is not missing (ageneisis) but it is very thin.

Then the more important thing they felt needed to be looked into - they are fairly confident she has a spinal issue. They mentioned her constipation and urinary issues getting increasingly worse. She has spasticity and hyperreflexia, more in her right leg than left. She has clonus really bad, but only in her right leg. She also has an upgoing right toe on plantar stimulation. She is totally able to walk in a gait trainer, where she does not have to support her own weight and remain upright on her own. She can get where ever she wants to, and follows direction. She CAN walk, she is just UNABLE to. IF that makes sense, LOL. She knows how, she just can't do it without assistance.

These doctors told me that all the other children they've seen with this specific type of microcephaly are not as disabled as my Peanut. They walk, they do not need catheterizing, they do not have bowel problems. So they feel confident that she has a spinal issue in addition to the microcephaly.

I sent a fax to our urologist today, asking for an MRI of her thoracic and lumbar spine. I want to have this done before we go on to the Mitrofanoff procedure. If the doctors we just saw are right and it is something like tethered cord that is repairable, she may not need to be catheterized! They said that given the right spinal diagnosis and surgery, they feel confident that she will walk.



Could you imagine?? I am trying not to get all my hopes up for this. I am excited for the spinal MRI, but trying not to get TOO excited. I'm prepared (or so I tell myself) for it to find nothing, and to go on and do the Mitrofanoff as planned. I'm prepared for a wheelchair princess to remain gait trainer dependant for walking.

But can you IMAGINE?????

In addition to all of that, this coming Sunday is Monkey's 9th birthday. We are having a Pokemon party in our backyard. Holy cow, that means a LOT of housecleaning and yardword needs to get done in the next three days.

Like I said, I am gasping for air and hoping to get it all done without running out of breath! :)


Lacey said...

It definitly sounds like a spinal problem. Hopefully the MRI will show something.

Jessica mommy to Alex/ RTS said...

Take slow big breaths, you wont run out, I know it!

The VW's said...

That would be WONDERFUL!!! I'm praying that this becomes reality for you! HUGS!!!

HennHouse said...

I am SO EXCITED for you!

What hope!

John and Jenna Gensic said...

It is so good to hear such optimistic news. We're praying so hard for Peanut! I hope you get the chance to just BE sometime soon. It's so hard, isn't it? At least you can take comfort in knowing that all the sacrifices you make for Peanut make your life meaningful.


Treguboff Family said...

Hi Guys!
It was so nice to meet you in California! We are glad that Peanut is doing well. Keep in touch!

Jennifer Treguboff

Tia said...

Glad the VCUG wasn't too awful. Definitely not our favourite exam either.

How exciting to have new possibilities!