Wednesday, December 22, 2010

how do you spell Santa mom?

I should have bought stock in Hershey's Syrup. If only I had known 4 years ago that I would have gone through so much these past few years. I bought a case of it around 6 months ago and Matt went downstairs the other day to get another bottle and he said there were only 2 left. I figure we have used close to 50 bottles in the past 4 years.

We found that Hershey's Syrup was the best way to administer Kendal's anti-seizure meds. A spoonful in the morning and a spoonful right before bed, every day since April 2007, almost 4 years ago. Granted, some of those 50 bottles were squirted into the sister's and brother's mouths also, but Kendal sure got the most of it. Oh yeah, and Emmitt is quite fond of his chocolate milk!

Today is a HUGE day for our family because Kendal gets her last dose of her meds tonight. We have spent the last 4 months doing a 'slow taper' off of her meds. She has responded great - no return of the seizures so far. Keep your fingers crossed though! Kendal has been on these meds since she was 22 months old. CRAZY!! They have some nasty side effects like not being able to physically sweat, (yeah, summer is rough around here!) and concentration and speech inhibition, and a host of others. She has done so well though. Getting off of the meds will also safe us a ton of money. A one month supply goes for $444.50 right now. Yeah, we are all happy!

She is in all day Kindergarten and is coming along great. She said to me yesterday "Mom, how do you spell Santa?" I said "S and then an A." She said "S like a snake and then an A like Aniken" and then wrote a perfect s and an a. "N is next" I said. "N, hey I have an n in my name!" Then she wrote an n. I then said "Okay, now you need a T and another A." She then sang some little song about the letter t wearing a hat and then wrote another a for Aniken. I looked at her word, a beautifully legible SANTA, and smiled. She is doing so great and I am so proud of her. 70% of the children that get what she has, infantile spasms, a severe form of epilepsy, never mentally progress beyond the age that the spasms started. We are so blessed that my Kendal is 5 and acts like a 5 year old. There is a little boy with the same condition in Cedar City that must be 9 or 10 by now but behaves mentally and physically like a 9 month old. God has blessed us and we are so grateful. Kendal is coming out of her 3 1/2 year sleep and it has been fun to get to know the real Kendal better. She is full of it we are finding out, but I suppose she needed that spunk to get through the rough times.


Tori said...

Oh that makes me cry happy tears!

I think she is so great! and a tough little cookie.... her mama is pretty tough too!

mom said...

Yeah, I agree with everything Tori said. Both of ya have been tough cookies to get thru this,,,,,I hope she continues to grow, and flourish, its her turn.


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