Sunday, June 11, 2006

[Photos: Bathtime!, All our boys on the OC boardwalk, Scott entertaining the crew]

Very nice weekend at the beach with the family - all of our kids played together, Bax loved the merry-go-round and hanging with his roomie Jack L., and I got some great time with our friends
. It felt wonderful being with the crew. I had one moment last night where I just got very sad that Mike wasn't there. It was the kind of time that Mike absolutely loves. But other than that, I let myself enjoy the familiar feeling of being surrounded by the people we love. (Baxter spent much of the weekend crying due to freaking 2 year molars, but more on that in a second).

I was talking with Julie on the way home about what an incredible group of friends this is. I've only known them for 6 years, and yet we have seen each couple get married (6 weddings and 1 on the way), and the births of Soen, Adler, Baxter, Peter, Jack, Sylvia, and 4 yet-to-be named members of the clan. We've seen each other through times of grief and celebration. And the best part is, they are amazing people. As Julie put it, "superheroes."

Unfortunately, Bax had a rough go in spite of all the fun. Molars are coming in. Bax has a terrible time with teeth. for about a month with each set of new teeth he turns into "baby nut job" (used affectionately, of course). Happy, sad, hyper, sleepy, angry, laughing, all the while chewing so hard that he chewed his tongue all up and then it hurt to eat any foods. From 12:30 last night until the break of day, my adorable son and I "rested" together on the sofa as he cried the whole way through. Poor Jules and Jack were up all through it.

So, this morning, wise Julie said, "I'm thinking we head right now, get home, get good naps in, and call it a day." done. We were back at home by 10 am and thank g.o.d. Baxter got a good afternoon nap. However, he did continue to cry all afternoon (yes, all afternoon - through coloring and stickers and playing ball and running around outside) until finally I discovered the toddler binky my dad had bought for Bax three months ago when he feared the little guy might need some security with all the craziness in his life. Well, I never gave the binky to Baxter (he hasn't used one since 3 months old) but tonight, got it out of the package and watched as a relieved baxter chewed his way to sleep.... thank you dad.

Mike had a great weekend. Lots of visitors to keep him company, nice time outside on the roofdeck with Tom, Meh, and Diane. During one window of time on Saturday, the nurse said that there were no visitors there and Mike didn't have any therapy scheduled, so the nurse asked if he wanted to go back into his room alone, or stay in the wheelchair out with her near the nurses' station. He said sweetly, "I'll stay with you" and chatted with folks who came down the hall (not really initiating still, but chatting when chatted to).

Got a call from the case manager, Cynthia. She said the team met about Mike's case on Friday - all his therapists, docs and the case manager. After their assessments made Wed, Thurs, and Fri, they are on track to continue Mike's rehab, return him to Jefferson for the surgery when the time comes, then bring Mike back to Magee for a second round of surgery post-op. Very good news. This is exactly what I was hoping for. In this first round of rehab, I think he's going to make great progress physically - getting strong and moving about on his own. Then, the second round I figure they can concentrate more on his cognitive functioning.

Ok, I'm so tired I can't see. Enjoy the photos.
love, danna


Anonymous said...

Funny, we saw Mike chatting in up on Saturday in the hallway when we arrived. In fact Angela was looking for his room and walked right by. I was like he's right here. LOL. He looked amazing. Sitting up, in full attire, shoes, everything. Sounds silly, but it was so refreshing seeing him that way instead of in a gown lying in bed. He was smiling and VERY alert. Easily the best we've seen him physically. He struggled with a few questions, but overall was doing super. Magee is really great and everyoone was very nice including Roy his roommate. We were joined later by Carrie (sp) and the four of us had a great time. Mike sat in the wheelchair the entire two hours and never appeared tired at all. A great visit.

Kirk and Angela

The Brain said...

Thanks, kirk! Great news!

x0x0 danna

Anonymous said...

Hi Danna
Just wanted to share a good story about Magee, its a great place. Rays 16 year old cousin had a diving accident 2 summers ago and was paralyzed form the neck down. He was at Magee for 4 or 5 months...he walked out when he left. :-)
God Bless, glad things are looking up.
Leslie McHenry

csm said...

Hi Danna.

Glad to hear you had a good weekend away. Magee is amazing. Craig and I went yesterday for a spell. Got there when Mike was eating lunch... so we left and came back. By then he was in the gym-- and they said we could come in with him. The therapist was working with him and noticed that Mike had his eyes closed... and when he asked why, Mike said he was embarrassed... so Craig and I left ASAP... We felt bad-- but Craig pointed out that it was good that he could be vocal about how he was feeling.

We waited for him in his room and when he came in, we chatted for a bit. We talked about CSZ and he showed us all the "fouls" and explained why you would get called... I asked him how he liked wearing clothes and shoes again... and he said it was great. We talked about cooking (and he confirmed that he is the better cook of the two of you-- with a chuckle)... I even had him draw for a bit in the back of the visitor book... and showed that to the occupational therapist when she came in to take him for his session (he is a busy guy). She said he's doing well!

His roommate, Ron, is amazing! We talked with him for a bit on our way out-- he was drawing and watching TV. He said Mike's already come along-- more vocal than when he got there... He said he gave him one of his comic books to look at. Hopefully he's a good help to Mike from the interaction standpoint and all... He's very motivated... was talking about how he couldn't wait to get his prostetic leg so he could go for a run!).

I'm still gonna try and figure out the timing issue and go and visit Mike more this week... I just want to make sure I don't show up when he's in appts and at meals... he's a busy guy!!! I am also going to bring him so paper and crayons and pencils, if that's OK. He seemed good with the pencil when he was drawing...

love, csm

And-- side note-- he looked WONDERFUL. Checked shirt and jeans. And his hair is growing back!

The Brain said...

Great story. Leslie! Thank you. I can totally see how miracles happen there. Their PT/OT regimen is intense, but it's fantastic for getting patients back in the game.


The Brain said...

Thanks, CSM! Isn't his roommie, Ron, great! Totally the kind of spirit Mike needs to be around. Great stuff, indeed.

I'm glad you love it there as much as I do. It's a wonderful place. I'm going to get his schedule and put it online so peeps can know when he's in the gym etc. I didn't know he had pt/ot sessions so frequently on weekends - I love it!

love you,
ps: movie date soon?