Update

Will start blogging again soon. Abigail is no longer on the Ketodiet and we got her cholesterol down from 600 to 125. I will try to get something more posted soon!

really quick...I want to be a cyborg too.

I am so jealous. Abigail is one step closer to being a cyborg than I am. Better living through technology I always say. I want to be signed up for a memory impant.

Abgail did really well in the surgery and is recovering nicely. The only complication was some O2 saturation levels being to low. They kept her in the hospital an extra half a day to check that out. Everything turned out fine and they let us go home on Tuesday evening.

The surgeon said she had a good looking vagis nerve. Must be surgeon speak for everything was fine and we have nothing to worry about.

At this point we are scheduled to activate it on the 8th of March.

Small Update

Once again sorry for no recent updates. It has been a crazy winter. Here is the last few months in a nut shell.

Abigail is now on a 2:1 ratio with a net carb intake of about 10grams per day. Not really Ketogenic diet anymore but more like Atkins for Seizures.

Once again tried some new meds to no affects.

We are considering ending the diet due to some irregularities in her red blood cell size. We have an appointment with a Hematologist in March. Thoughts at this point are that the diet is stressing her bone marrow. We will know more after the appointment.

Abigail is now on Depokote after a four day stay in the hospital in November. They put her on Depakon (sp?) an IV version of Depokote to get her to therapeutic levels quickly due to her constantly seizing. She was having 3 or 4 episodes per hour for almost a day before they were able to break the cycle with the Depakon. She is fine now and back to her "normal" 4 to 6 seizures per day.

With the failure of the 9th medication that we have tried, we are now going to do the Vagis Nerve Stimulator . It was a long hard decision but at this point we feel is the right one. She is scheduled for surgery on the 22nd. Just a week away. The Neural Surgeon is great and we looking forward to getting this done. They won't turn it on until two weeks after the surgery...and it will take months to get her to full dosage as well as fine tuning it.

An interesting coincidence occurred while we were in the waiting room at the surgeons office. I had met a mother online through Facebook of a another child in Portland who has Epilepsy. She had questions about the Ketogenic diet and has actually put her son on the Low Glycimic (sp?) Diet which is where we hope to get Abigail at some point. She was waiting to see the same surgeon as us! It was a crazy way to meet! Her son had received the implant 3 months ago, and is doing great. She was very helpful in answering all the questions Melinda and I had about the device as well as what the post surgery recovery was like. We hope to stay in contact with her so we can compare notes and experiences with the device.

Over all we are hopeful about the VNS implant but have become a bit jaded after so many failures. The thought of implanting something to control the seizures is terrifying but I keep telling myself; if Abigail had a heart condition I would not think twice about a pacemaker.

Over all Abigail is doing great developmental wise, still working on building her vocabulary, and we are now starting assessments for Kindergarten in the fall. She love the early intervention class she goes to on Monday, Tuesday, and Wednesday mornings. There is some talk of having her in a general classroom with a helper, and spending some parts of the day in the special needs classroom. Right now the plan is to do Kindergarten twice, half days the first year and full days the second. I don't want to plan to far into the future but it makes me feel better to do so, so I do it :)

I will try and post some updates from the hospital next week!