Hope's First Surgery

I just had a long conversation with the doctor. He went over all of the options and what he felt is the best option. I will be calling tomorrow to get surgery scheduled. the doctor will be going in and placing the catheter that attaches to the pump. He will glue and reinforce it in the back and then run it to the stomach and attach it just below the skin. While the catheter is in place he will drain spinal fluid in the O.R. and then stitch everything up. In theory, if the catheter can heal and stay inside her, the pump can be placed later. She will lay flat for 2 days and then be slowly elevated (another 4-5 day hospital stay). After surgery they will give her a medicine that will slow down the production of spinal fluid for a couple of days. There is a high chance that the catheter in the stomach will have to be opened up and drain more fluid.
If this fails, we will do pressure testing (hole in skull with probes to monitor pressure levels in the brain for 48 hours), most likely followed by a shunt (drain in brain to relieve extra pressure) and then the pump. Hope has a high pressure but not enough to need an immediate shunt. A shunt is a fairly easy surgery but has many possible complications/medical problems (such as seizures, bleeding on the brain, etc.) and has the possibility of frequent surgeries. Once a shunt is placed it is a life long necessity in most cases. The body will adapt to the shunt and become dependent on the shunt.
As long as Hope is without a shunt, she will have problems healing. Any wounds she incurs will heal very slowly due to the extra pressure in her body. Explains why it took 6 months for the small wounds on her stomach to heal!
This is a lot of information, if you have any questions please ask.
Please say prayers. Many of you know that disability services are being cut. There is a new bill introduced that would eliminate my health insurance for Hope. Her therapies are already at high risk of being cut back and possibly eliminated. They are also trying to cut durable medical equipment (wheelchairs, arm crutches, walkers, oxygen, etc.). I know we are all in rough times.
I have an appointment to tour PIMA Medical Institute on Monday and speak with an advisor. As long as grants haven't been cut, I am hoping to start a 2 year program to become a Certified Occupational Therapist Assistant (COTA). Since there are a lack of therapists nationwide, a law was passed stating that COTA's are able to work independently as long as a certified OT is available by phone. Basically, I can work with kids in their homes as long as Melanie (my old boss) is in my speed dial. I will walk out with my Associates Degree and (hopefully) the ability to pass the Certification test. I will then work towards my doctorate in Occupational Therapy. The COTA will allow me to start working and gain experience before completing my doctorate.
All of Hope's surgeries will take place at Phoenix Children's Hospital. I don't trust anywhere else! I will keep this posted as to when surgery is and then updates after surgery.
Thank you everyone for your continued support, love and prayers!

Track and Snow Day!!!

This is a picture of the stander that Prayer Child Foundation bought Hope. She loves riding through puddles with it and doing circles of course!

We went to a sporting event through AZ disabled Sports. Hope was able to try everything out and then join the sports she liked. She tried archery but was very frustrated. The targets were very far away and the experienced boy next to her kept nailing it. We will be getting her an archery set so she can start at home and join the team next year, after surgery.

She did end up joining the track team and is loving it. These pictures are from the trial day. She is now rounding the track on her own and running 100 meter races against the other girls. She is the youngest out there and is doing very well. One of the US paralympians is at practice with her every week too, he went to Bejing this past year. He has helped her a lot. The adults and kids train together. Our amazing Physical Therapist will go out this week and give her a kick in the butt too. I'm sure her speed will increase. Now if we could just get her to drive straight and quit crashing into the fence!!

We came home yesterday from a fun trip to Payson. We go every year to see snow and stay at the same hotel. They have a patio off the room that opens into a big open area of snow. We took spray bottle with food coloring so she could "paint" the snow and lots of snow balls!! I look forward to next year with a service dog!!

We still haven't heard on surgery or a date on the service dog yet. I hope everyone is well and has a happy Valentine's Day!

Beth Ann and Hope