Wednesday, August 15, 2007

Rambling about all sorts of stuff...

Today we had some good news. A couple of doctors studying PMA (Matt's type of tumor) at Johns Hopkins are going to review Matt's diagnosis and treatment plan. We have wanted a second opinion, and are glad these doctors have agreed to provide one. Assuming we can get the information to them this week, we may have their opinion by the end of next week.

Matt had a good day today. He was up and around all day. We took him out to lunch with some friends who were visiting. He insisted all day that he didn't have a headache and so has not had any pain medication - pretty remarkable for 1 week after brain surgery! His main complaints are still the excessive sweating and shaky legs. Today he was just darling, though. I think I've wrote before that we joke the tumor is affecting his 'pleasant, helpful' section of brain. He continually asks what he can do to help (although if I do give him a job, he forgets what I sent him to do... :-)). Today he really wanted to keep the younger children entertained. He read to them (another good sign, I think!), and generally just helped organize them and played with them quite a bit. He also surrounded himself with his 'normal' items - his Gameboy, Harry Potter 7, this bird book that he has been looking at a lot lately. Seeing him with this stuff makes me hopeful that our Matt will return - along with his short term memory!

Today we had the first of probably many experiences involving Matt's short term memory loss. One of Matt's cousins described Matt's current behavior as being like Dori from 'Finding Nemo.' It is really a spot on description. He has a hard time remembering things we did 10 minutes ago, even if he can recollect in minute detail, things that happened to him at the age of 4. Anyhow, Matt told Will that Will could play his new Pokemon Gameboy game. Then something happened and Matt took it away, didn't remember the promise he had made to Will, somehow lost the game, and then truly couldn't remember where he had put the game. Will was just devastated! Matt has always been so reliable about keeping his promises, but tonight he just couldn't remember that he had promised anything! It will take awhile before William understands Matt's new limitations. It is very hard on our kids, especially Will, to see a different Matt emerging.

We have also realized that many people don't know that we moved to UT. We have been here since March. Warren got a job offer from a firm with the a SLC office (main firm is located in Palo Alto, CA). When he went in to quit, his current firm made him the same offer- but he could work from home since his current firm does not have an office here. Staying with the same firm and working from home meant we could live anywhere. We had such positive memories from our undergrad days at USU that Logan seemed like the right place. It is also centrally located for our extended family. Warren travels from UT to Chicago a couple of times a month, but spends the majority of his time here. Best of all, Warren gets to spend more time with the boys doing the things we love (hiking, camping, jeeping (Warren bought a new jeep . . .), fishing, skiing, etc.). At the time, it just seemed like a good opportunity for Warren's career and our family, now we truly feel it was 'meant to be.' We can't imagine living in Chicago and trying to fight this battle without the support of our extended families.

Wow, for having such an uneventful day, this post sure got long! Congratulations if you made it through the WHOLE THING!!



Katie said...

It sounds like a good update. I'm glad to hear things are going well for your family. I'm fasting for you guys today, so know that you're in my prayers and heart!

Anonymous said...

I just read your blog on your journey with Matthew. I have to admit that at times I had tears flowing, then a laugh about a Matt demanding to be RELEASED!!!
We are praying for your family, you guys are great people, and great parents. We miss you here in Boston but are greatful that you are near your families.
Thanks for keeping everyone updated.
Denise & Jim Kelly & family

janessamargaret said...

I talked to Laura Barnes today and she told me about Matt and gave me your blog address. I'm so sorry to hear about Matt, and so profoundly touched by his strength, and yours. I'm happy to know both our families are in Utah now. I'm in Alpine. If there is ever anything I can do to help, (watch kids, run errands, etc.) please call: 770-3459. I'm all over loading my kids in the car and driving up there. (I'm serious!)