Chiari/Syringomyelia Conference 2009

Well people, for the first time since May 2001 I will be travelling WITHOUT CHILDREN!!!! I am going to the ASAP Conference in Madison, Wisconsin. In the last 12 hours my anxiety about leaving the kids, especially Gabe, have come to full force. Gabe is 3 weeks post op today and we are manually distracting his head and I am expecting my (poor) mom to do this. I know she can, but it is still scary to release this control. (Yeah, I have control issues. I can embrace that and own it)

The best part of this trip, minus having to share my bed with FAYETH, is that I get to spend time with some of my favorite Chiari Moms. (Just wait until camp, THAT is a lot of fun, 23 of my favorite Chiari Families!!!!) Kristen has flown in from OK and I will pick her up in Mt. Prospect this afternoon. Our friend Tommi had to cancel due to her daughters surgical wound infection. Cindy will be coming along with her friend Jenni (whom I have yet to meet) Kristen and I are sharing a room. No Kids. No listening to "Mommy, Mommy Mommy!"

I will be back sometime on Sunday. We have a FAB dinner at the RMH on Sunday so I will be stopping there to help with Dinner before we come home. Have a great weekend ladies!!!

Craniofacial Distraction Osteogenesis

The procedure in which we are going about making Gabe's head bigger is called Craniofacial Distraction Osteogenesis. In generic terms they go in, crack his head like an egg, use sutures to loosely hold the fracture bones in place, attach wires to the fractured bones and pull them out of the skin. Those wires are then attached to a helmet. (in our case) You then manually make the head larger over the course of time. By manually, I mean, *I* (mommy) turn the key device twice a day. We just started doing that today. So, I am not completely sure what the pain scale will be in this. We are also allowing the brain to distract a section of bone over the top of Gabe's parasagittal sinus itself.

Wires coming out of the skin on the skull, attached to a spring that will provide a constant tension of "250" at all times (this is an orthodontic spring) that is now attached to a spring ring clasp. (It was attached to a fishing swivel)

We are already seeing some improvements:

Front of head:

Day of Surgery 6/24/09

2 weeks 2 days post op

2 weeks 6 days.

The forhead is much more round as are the temples!

More to come later!

Craniosynostosis, Take 3!

Some pics from Gabe's 3rd Cranial Expansion:

Our view from 3rd floor surgery holding....

See the story here.

If you want to read the story behind the pictures go here.

Gabe's helmet lost the fight with Hannah's head...

Packing and Pandora's Box....

This is always one of the worst parts of surgery. Not the fact that I have to do 8 bazillion loads of laundry to get everything ready to go, but the packing to disperse my children to other family member while I leave to go to the hospital with another child. Tonight I am finishing up laundry and my heart is breaking. I am packing bags and realizing that it is going to be a week before I see Fayeth again and 6 days before I see Lindsay and Hannah. As much as they drive me insane at times, I love them so much the fact that I won't be able to see them for so long is breaking my heart. Now top that off with stress, pms and worry...and DAMMIT I AM A JOY!!! :)

Also the concern that we are opening Pandora's box is scary. After Gabe's decompression we opened that nasty little proverbial box.... Just in case you were undecided...Pandora is a BITCH! A BIG OLD NASTY BITCH!! We had decompression, chemical meningitis, papilledema, dx PTC, sight flair up of chemical meningitis, drain trial, reaction to flu vaccine, Shunt placement, OR for an LP on Christmas Eve and back to the OR for an LP on his birthday, Shunt revision. That was from June 27, 2007-February 20, 2007. ACK!

Darren and I both got a gift for Father's Day.... We showed my mom and my sister and the looks on their face said it all.

Please just pray that this was a fluke thing and we are not traveling down this road....again....

Poor Darren....

Hannah: "Daddy how old are you?"

Daddy: "I am 37"

Hannah: "Oh NO! You are not a daddy anymore!!! You are a GRAMPA!!!!"

Daddy: "I love you too hun!"