Friday, September 16, 2011

Updating

Time for another update on Lily. Still no surgery scheduled. Just because she had that whole heart thing and had the holter monitor now they need clearance (Clarence, Roger Roger - sorry that Airplane quote always gets me when I least expect it) from Cardio. Geeze so thorough... I'm being facetious, I appreciate the whole wanting to make sure her heart can handle surgery.
I wonder why they don't want to check mine. I am fairly certain hers can handle it better than her moms.
Anyway, so no news there. My friend Kim said I should schedule it for months out just so when it actually happens months away I won't be annoyed, it will be ontime. Spoken like someone who knows the fun of dealing with lots and lots of Doctors.
We went to see again our new neuro, but I think this one will stick. She was very smart (duh), kind, gentle and beautiful. Not really want you expect from a neuro/epileptologist. She wanted a plan, not just a short term plan, but a long term plan as well. We are trying Zonegran again, it's been years since we tried it. We will also be putting Lily on the modified Atkins diet which is not as extreme as Keto, but a lot of times just as beneficial. I am starting that after her tonsils are removed obviously. Maybe not obviously for everyone, but when you get your tonsils out you eat lots of popsicles, ice cream, ie cold sugar. Not really so much items from a high protein diet. So there, now you know obviously.
If in a few months if the Zonegran and diet are not stopping the tonic, tonic clonics and drops then she wants us to seriously consider going ahead with the full callosotomy.
Quick back up when Lily was 2.5 yrs she had brain surgery, a corpus callosotomy, but they only split her about 1/4-1/2. They are essentially stopping the right side from "talking" to the left. Like a serious break up. They typically just do half in hopes that is all they need to do, but sometimes especially in kids with LGS (lennox gastaut syndrome) they do better with the full callosotomy. I am very anti this. I guess basically because it requires cutting my babies brain in half literally. I came in with guns blazing ready for this option to be brought up yet again, what I didn't expect was for my husband to put my guns down and ask real questions that made me consider. And just consider the option. Andrew hates the amount of meds she is one. As do I, of course, but he is looking at the long term effects more than I do I guess. The surgery done properly will not change anything about Lily. My biggest concern. They won't be removing anything so she would still be Lily. Prior to the first surgery Lily had 6 tonic clonics a day making the surgery our only logical step, but she isn't that bad now so it is hard to say yes to this next step, but considering how much less her seizures are with the 1/2 maybe the full would eliminate those seizures and she wouldn't need to be on that many meds anymore. I always thought it was the Vigabitrine that stopped her tonic clonics, but maybe it was the surgery. I don't know. The surgery doesn't help immediately right away so when she came out of surgery seizing that wasn't a huge disappointment, let me clarify IN THE MEDICAL WORLD, to me it was the biggest sucker punch life had ever dealt me, but maybe knowing more ... maybe asking more questions....maybe more research. Maybe, just maybe, just just maybe, it could be in our future. BUT what I am praying for is that that getting her tonsils out with improve her sleep and her seizures will be better after good sleep and then the diet will help as well and we will see enough improvement to get her down to one maybe two meds. So friends I ask you all as well to say that prayer for Lily, but I also know God is in control and if the surgery will be what puts Lily's brain at rest then I pray that option will be made very clear. What I have been explained over and over again the tonics and tonic clonics are the seizures that most often take lives and I am not going to let seizures win. I will not. We have fought seizures for 9 years starting Sept 21 to be exact and we won't quit. Nope not ever.
So please continue to keep Lily in your prayers. I know many of you have since the beginning and I know God has held our hands through each step, even on those days I let go of his hands, and on those days I pushed him away, and on those days I clung to him. He never left our side. I know he won't and have full comfort in knowing he will see us though.
So that is my update for now. Work smerk... just kidding Dad. I am back to work! Yup... just working away...

3 comments:

Tecia said...

Kim- great post. You and sweet Lily are in my prayers that God will provide whatever is best for Lily and for you the strength and wisdom you need:)

Delicious and Healthy Recipes said...

This is great! God bless you

chris said...

glad lilyanna's surgery went well kim!!!!!!!!!!!

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