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!

Fayeth and My Mom...

Fayeth is so rotten to my mom. My mom use to think that Hannah was the thorn in her side....Then came Fayeth. Hannah argues with my mom, "Because it is fun!". Fayeth is just a shit and speaks her mind. A few funnies over the past week....

Gramma goes to kiss Fayeth "Bye".

Fayeth: "You have a butt on your nose"

Gramma: WHAT?

Fayeth: Gramma you have a butt on your nose.

Gramma: * Leans over and brushes her nose over Fayeth's face * Now I wiped my BUTT on your face.

Fayeth: But your butt is still on YOUR nose!

Gramma: I cannot make your family happy. When your mommy was pregnant with the twins your daddy said he did not care who they looked like as long as they did not have MY nose. My nose that was shaped like a ski slope. Then I get the end of my nose cut off to make him happy and now YOU tell me I have a butt on my nose!!!

*side note* My mom DID NOT have the end of her nose removed for cosmetic purposes, she had basal cell skin cancer.

On June 10th, Mom, Fayeth, Hannah and myself went to the U of C to donate blood. I could not donate blood because my blood pressure was too high however my mom was able to. The blood bank gave my mom a red silicone bracelet that says, "Give Blood". Since Gabe gave my mom one of his 3 purple silicone Chiari bracelets she said she would give him her red bracelet. (Gabe LOVES silicone bracelets) So the day after the twins came home from camping, my mom told Gabe at lunch that she had something for him. She gave him her red bracelet and he was thrilled.

Gabe: Gramma, thank you SO MUCH for donating blood for me and giving me this awesome bracelet.

Gramma: You are welcome Gabe. If they use my blood and you fall and skin your knee I am going to give your grief for wasting my blood ;)

Gabe: Oh Gramma you are so silly!

Fayeth: Gabe you are going to have OLD LADY BLOOD in you!!!

Gramma: Fayeth, you are such a brat

Fayeth: I know Gramma!!! I love you too!

In 8.5 hours I will be speaking to a group of new orientees to the medical center. This is the first time since being on the FAB that I have had to speak to the Nurses. Last year I was taped and it was played for Schwartz Rounds.

They ask that you bring pictures to make your stories more personal and to touch these new employees. So the last few days I have been looking thru pics, which is making this so much harder. I should not have done this. I am too emotional. I am very concerned about tomorrow. I am very concerned about surgery in a week. This journey...again....

Gabe 11 months old-Christmas Day. This was the pic that we saw his ridge. This photo was the start of his metopic craniosynostosis diagnosis.

Post op 19 hrs.

27 hours post op

6 days post op

3 weeks post op...

Catching up...

Life has been a bit busy around here. Imagine that. ;)

Tuesday we went to the peds office to have Fayeth's laceration checked. It is healing well. The edges look to be back together well and she should heal nicely. Of course she will have a bit of a scar, but you know, that happens. I also asked Dr A if she would order a shunt xray because Gabe was having some pretty bad shunt/pressure/chiari/dysautonomia symptoms. I wanted to make sure that his shunt had not reprogrammed itself. That is always a concern anytime you go out into public. magnetic doors, items in a store that use magnets. You never know when you will come across a magnet that will be strong enough to reset the shunt.

I had to go into Chicago that night so she was good about ordering this for us. When we got home I checked his films and his programmable valve was set at 3 which is where he is suppose to be. YEAH! However the tubing in his back appeared to be kinked. Another chiari mom thought the same thing. While in Chicago I did not see anyone at the hospital that could help us.

Wednesday the prelim xray result came in with, "The shunt tubing is noted to overlie itself within the paraspinal region". A very fancy way of saying that his tubing is kinked. Frim was not impressed with this and said that he needed to see the films. I got the address to mail them and then decided to drop them off Thursday at Clinic and then go to the Museum.

I heard back from Frim last night that we will talk when he gets a chance to look at the flims.

So long story short, Gabe currently does not have a functioning shunt. So that is the reason for all the increased pain issues, ect. On the occasions that he is able to reposition himself and it does the trip to temporarily unkink the tubing he immediately low pressures because he cannot handle the rapid decrease of pressure in his head. So, now we wait. I am going to be aggressive with this because I want it fixed. I am in hopes that if we get the shunt fixed that he can come off the methadone. In my opinion the methadone is a bandaid and I am tired of using a bandaid to cover the problem.