Wanted to make myself a list of positive things coming from this experience thus far…
1. Seeing the mature and loving side of Davis always brings a smile to our faces. He asked grandma and grandad if he could say grace and he asked for Reesey to feel better and come home soon. We don’t so grace at dinner so this was clearly a form of expression for him and it just shows how aware and empathetic he is.
2. Quality time with friends. This has given us some much overdue time with dear friends, However distracted we have been we are grateful for the love.
3. Finding out what an impact Reese has had on our entire community. We are never going to forget the purpleday photos. http://rugratproject.tumblr.com/post/81016734417/we-are-so-loved-thank-you-everyone-who-showed
4. Another development step for Reese. Despite the drugs, the stitches, the bandages and everything else we have watched her play with her castle and figure out how to open the door by pushing on the unicorn. So little, but just more proof she is a fighter and wanting to keep learning.
5. Quality time with Reese. That’s always a good thing. It started two weeks ago when I lost my job and it gave us extra time to prepare for this even though it’s not quite what we were preparing for. And it means I have more time when we get home and I can stay focused on what’s most important.
6. We have found the Cook Childrens entire family to be amazing. Reese has challenged them all to be on their toes, to be engaged and attentive and caring. And they keep meeting every need, and exceeding expectations.
7. Finally, we’ve had two very typical seizures for Reese tonight. So thankful! So despite a terrible day, we now are more mentally and emotionally comforted that we are doing the right thing. This whole horrific experience is not for not and we are closer to the end.
But there is a catch. Reese has some pressure on her brain probably from a blood clot. This caused her to start throwing up today and as she got more lethargic it was due to the nurses and doctors observing her that we saw some unusual seizure activity, got a rushed CT scan at 4, identified the problem, arrived in ICU around 7 tonight, caught her two classic seizures and headed in for surgery around 8:30.
She will not be having the main problem removed tonight. We are going to allow her brain to rest. But she will be able to recover after alleviating this pressure and the doctors should have enough data to build a good plan for Tuesday and finish this process.
It’s been rough but it really all is positive at this time. Thank you for all your support. We are one step closer to our goal of seizure freedom for our sweet girl. We will post more when we know how she is doing after this unexpected surgery.