Reese al Fresco

What a day! Happy Reese is such a good thing for all of us. We’ve been on cloud 9 today, soaking up all this eye contact and love from our little lady. From soccer to lunch to nap and playtime at home, she never sank into a fuss. She even humored mom and dad for a special splurge of dining at Eatzis al fresco. She loves the breeze in her hair apparently, because she couldn’t get enough of looking into the wind and moving around in her high chair. Love this sweet girl, so so much. 

Let the Healing Begin: Graphic Warning

Let the healing begin, sort of.

Dissolving stitches almost gone. Staples come out Tuesday. I know it’s probably been hard to piece together where things are with us so here is the abridged version.

First surgery was for the EEG implant and we got the data we needed. Second and third surgeries were emergencies to stop unexpected brain bleeds and “evacuate” the building blood clots. Second clot caused some scarring that means it is damaged tissue now. But doctors don’t care because it’s in the section they plan to remove. All this means is she would have lost the function of part of her brain anyway.

Which leads us to the fourth and final (knock on wood) craniotomy. A left temporal lobotomy. May 27 we are scheduled to have the whole lobe removed to be sure there is no chance for remaining tissue to cause seizures. This is a good thing. Reese is very young and her amazing brain will remap almost everything that would have been in the left temporal lobe. It may just take awhile.

It of course doesn’t come without concerns and risks of its own. Clearly she has a bleeding problem. Maybe it’s caused by long-term steroid use (don’t do ‘roids kids or prof athletes). Maybe it’s a condition she just had naturally. Either way, we are now prepared with vitamins and blood plasma for the surgery. Second concern is seizures — before and after. First we have to make it to May 27 without a seizure. Is it terrible if she has one? No.

But does she ever have just one? So we are doing what we can with other meds for the next four weeks. After surgery, many brains have seizures as they heal. We could see some false alarms
at first and have to wait out a good three months before we can see how it’s going, still taking our seizure meds. And finally, somewhere after a year we would start weaning off all meds to see if she is really in the clear.

It all means this beautiful head, with it’s slowly healing scar, will be cut again, (same place), and then first of June we will come home and start the healing process for real.

Thanks for all your patience, support, words of encouragement and high fives for Reese. She truly is a warrior and we are so proud of her, and her brave big brother.