Monday, August 27, 2007

New Normal

I think today was a pretty typical day in our 'New Normal' life. This morning Matt felt well enough to go to school and he wanted to take the bus with Will. I wanted to let him, but started to panic when I thought of him attempting to find his classroom on his own! Will is a little bit young for that responsibility, so I called a couple of moms of other 4th graders and asked if their kids could just make sure Matt found his classroom. It turns out I know a few moms who have children in Matt's class who take his bus, so they were able to all walk together to his class. I decided after the first day of school that a full day was just too long for Matt. He is so incredibly tired from the chemo - Sunday he slept ALL DAY, only waking up to eat. So, I thought it would be best to do half days unless he is feeling super well. I picked him up from school at noon, he ate lunch with his little brothers, and then he asked to go up to bed. He slept all afternoon, but had a great evening because he was well-rested. He even had a friend over this afternoon! It's funny how things like giving medicine (it seems like a lot - 6 pills morning and night, plus a nose spray to control diabetes insepidus), orchestrating his life so he finds his way around, and flushing his Broviac, are becoming part of our routine. It is certainly a different 'normal'!

3 comments:

KKRD said...

Hi Allison,
I'm sending all our prayers and love to your family. Please let Matthew know how much his "old" friends in Boston miss him. Everyone at Winn Brook is praying for him and just up in arms as your courage just beams through this blog!! Please give Matthew a kiss for us. Kevin, myself and the boys are thinking of you all everyday!
Lots of prayers,
The Dunbar Family

Dennis said...

Hi Allison,
I just read your entire blog. My name is Dennis, and my 3 year old daughter Lily is on the Carbo. Vinc. Temodar protocol. She started on Jan. 19, 2007. So we are about 7 months into it and Lily is doing very well with it. If you want to talk or need any help send me an e-mail. Hang in there. I know exactly what you are going through, our story is very similar. Lily's website, if you would like is:
www.caringbridge.org/visit/sweetlily
Gentile Blessings,
Dennis

belmomma said...

Alli,
Wow, you are amazing! Too bad you couldn't clone yourself so you could have the 'nurse Alli', the 'errands and housework Alli', the 'caring for the kids Alli' etc. etc.!
You and Warren are so brave, you are doing a great job and we continue to pray for your whole family.
Regarding your last post about doctors, I REALLY think you should talk to Mark Ott, they live in Holliday(I think) if you want to look them up in the phone book. If anything, he can be a source of info and comfort as he does oncology as well. He's always been willing to talk to people and send them in the right direction regarding their different situations.
Keep blogging, we all love to hear how things are going.
Denise