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Sunday, September 13, 2009

The good, the bad and the ugly...

The good:

James and Ryan are doing good. Posted some pics of them - James after football practice - dirty but I think he looks grown up - and cute. Ryan after his shower - showing off his muscles. Ryan and Meg snuggling together - my snugglebuddy and my snugglebunny. That is their nicknames. I am usually in the middle.....
Meg in therapy with Cindy- her OT - I love the way she is looking at her like "Of course I can do this - did you expect less??"

Megan has continued to spend more time off the vent than on. It is really nice. Makes Meg much more accessible to hold and love. Being off the vent means lots of open suctioning of the trach which has not made travel any easier, but it is a start. I am really proud of her and amazed at how strong she really is.
The bad and the ugly:

Infantile spasms - they are back - and just three days after I postponed the keto diet for her tonsils. They could reverse everything good that has started to happen. I am a mental wreck and can't even think straight. I am at a loss to describe the desperation I feel this weekend. What is next? Next med please... Sent an email out to see about HBOT's effect on IS. I am ready to take her in to the chamber - cant make her seizures worse - they are worse now.

I will call Dr. C tomorrow about vigabatrin and starting it - or clobazam - whichever he thinks is best. We are weaning the Keppra so at least we can get rid of one and then add one. A balance I guess.


Colleen said...

I am sorry she started having the spasms again...I hope they can get something that works good. We are in the same boat here..Kennedy started having seizures and we have tried so many meds.

All your pics are so cute...I am glad she has been able to be off the vent more. I will say some prayers.

Rox said...

While you are going to have her
tonsils out you should also ask them about her adenoids .