Monday, May 26, 2014

Still here

Well here I am, still hanging in there.
It was a long cold winter in my neck of the woods and the warm weather is SO welcome. My allergies not so much.,
Madie is well. We modified her Keto diet a little bit by adding two teaspoons of canola oil to her sippies..Yes very gross if you ask me..but its 240 extra calories that my little 38 pounder needs. STILL 1-3 big bad seizures per month..if only she would actually drink ALL The keto she needs we would be able to see if the diet REALLY will work..3 years on the Keto so far...What else could I feed her? She will eat Pudding that is vanilla flavored so far...and her keto "shake" I call it. Enfamil again? Pediasure? Pediasure is probably the worse thing I can feed her! Have you see the sugar in that stuff and at 10 bucks a six pack at least...and ya figure 4-5 a DAY!? Um....No. I felt a lot on my plate after the appointmet and really at a stand still about the diet and the pressure to GET the required diet in her tummy so she can oh..ya know...get enough fat in her BRAIN and GROW....Ugh..
I feel as if the diet has no doubt made her seizures a lot less...for sure. She was going from every week having them at school none the maybe having some twitches here and there to the one-three a month and when they hit they are strong...and thankfully at home in the wee hours of the morning or night...
I sadly never expect my Madie to be 100% seizure free and medication that would be a dream come true for sure..but she is 7 now...and has yet to walk...walking is for sure the hardest thing..unable to run and play with the kids...even being disabled in her brain at LEAST she would be able to get around... The convaid crusier has held up well. Thinking of selling the old Kimba Spring stroller...its missing the canopy and the attachments that the canopy go into but other wise good condition...the wheels have run a lot of miles...unsure how one can order new ones but they still turn and they aren't damaged... I really could used the money as opposed to "donating" to the local disabled folk

Well anyhoo...I guess I am rambling...Madie is upset and I have to wrangle in the cat for the night...I will type some more soon.. I guess not really in much of a sharing mood today.
Off to Jersey this weekend for a wedding too...been awhile since I have seen family. should be an occasion.

Hope everyone is well.


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