Saturday, July 10, 2010


It's soon mid July, and summer is moving by really fast. Sarah is back in school in a little bit over a month! Where did the summer go? We have done so many fun things together, but most of all, we have reconnected. We're not filling the afternoons with homework and must-dos. That's worth a million.
Jacob is back to normal after his short ICU stay last weekend. He was officially put on a diet this week, since his weight continues to go up, up, up! His seizure med level is higher than ever, but it doesn't seem to bother him a slightest bit this time! He is more interactive and vocalizing more than in a long time.
Today, we had a great summer day. We ventured out to Eldorado Canyon for some hiking and a pic-nic with Sarah while Jacob was hanging out with Gemma at home. It was a great morning. In the afternoon, we all went to the park with friends, went home for some dinner, and then back to the pool! Jacob hadn't been swimming for a few days, so was happy to be back in the water!
Yesterday was a Children's Hospital day, but without Jacob! I attended my first meeting for the hospital's holiday committee as the parent representative. I was drafted due to us having spent the two last holidays there. It actually felt a bit sad to be chosen due to that reason...I got kind of excited of what they are trying to do this year though, and I think we got some good ideas on the table! It was also really nice for me to work with the chaplain connected to the Intensive Care Unit. I am not sure how many times I have had coffee and bagels with him during the Tuesday PICU coffee hour, pouring out my worries from life in the Intensive Care Unit. It was nice to be an equal, preparing for the holidays, for a change.
I then had lunch with the doctor in Jacob's clinic that I have been working with for a year on the epilepsy project. She is really fascinated by how well the support group is working that came out of this initiative, and wants to use her next research project to understand why this particular support group is working so well. The goal being to replicate it for other parts of the hospital. This is definitely exciting!
In the afternoon, we had two residents from Children's Hospital come to our home to learn more about care from a family's perspective. A dear friend of ours was organizing this visit, and also one of our favorite docs from Jacob's clinic came out. We sat in the shady backyard, had peanuts (thanks for the tip, Heather!), and just talked about our lives and experiences with Children's. They all love Prague I found out as they counted to 5 (!) paintings of Prague in our house. It was a really nice afternoon. One of the residents was the student taking care of Jacob when he was in septic shock last summer. We got a close relationship during that very intense period, so it was really great to see her yesterday again. Before she left, she turned to me, told me that we all had made such an impact on her, and made her decide to go into pediatrics, and how she had written about Jacob several times during her studies. I know it can be really tough to be Jacob. All the medical battles that never ends, but to touch someone's life is priceless. I am sometimes just amazed by how many he has already touched at age 4. It's simply amazing.
Love, Maria.

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