Finally!

 

This is Connor on New Years Eve.  Didn't quite make it to midnight.  Then again, neither did I...

Belly...

So as I've mentioned before, we've been working really hard to get Connor's weight up.  It's finally working.  It's working too well!  He's got a gut hanging over the waistband of his pants, especially after dinner.  We've kind of tabled the moving downstairs discussion for now, just because there are more pressing issues.  It's the first time I have wished for more pressing issues in a long time.

I recently found the boys' keepsake boxes.  I had a milestone calendar that a friend thoughfully gave me before Connor was born.  Once it became apparent that he was not going to be meeting those milestones, I dumped the calendar into the garbage and got a keepsake box instead.  I went through the house and found many things I've been meaning to put in them, if only I had the time to unearth those pesky boxes.  Well, mission accomplished.  I found all kinds of little treasures, including the clipping from his first haircut at 4 months old (he was a very hairy baby) and of course, that tooth.  The first one that he lost that he didn't swallow.  It's all in his box.  I added things to his brothers' boxes as well.  They have less.  As much of a packrat as I am, I did not do a very good job on this.  Now that I've made them accessible, I'm going to make a true effort to put things in those boxes instead of stashing them in places they don't belong.  It will be nice to go back and read the cards sent to my boys when they are older.

I am still working to get pictures updated.  I promise.  I just downloaded the required software and need to populate with pics of the little man.  He turns 9 in a little over 2 weeks.  Nine is fine!

Ooops...holiday busy-ness equals no posting!

Well, the holidays were certainly lovely and interesting, but they did make for poor, poor posting etiquette.  I apologize.

Christmas was truly full of family for us.  Between December 21 and January 2, we had one full day without family visiting, and it was fun.  It was a lot of fun!  The boys all got lots of extra family time, which is always a premium for me.  Connor also slept a lot, but also spent a lot of time playing and being awesome.  His brothers helped him open his gifts, and Tucker's relentless joy over each gift, for anyone, was infectious.  He opened up one of Connor's gifts and exclaimed in his ridiculously adorable voice, "A sweater!  Just what he wanted!"

He said that for every. single.  gift.  :)

He went back to school last week and while it was only a 2 day week, he had two really strong days.  I have high hopes for 2013.

However, we have started to face the reality that it's becoming time to move him from his cozy room 10 feet from my room to the downstairs bedroom we had created when we renovated in 2009.  I am very conflicted about this.  I do not want him that far away from me at night.  How will I hear him? 

Planning for school

So one of the things we get to do with Connor and his teachers each year is develop an IEP, or Individualized Education Plan. Our meeting for his annual IEP is tomorrow morning, and it always makes me nervous. The educators and therapists spend more waking time with Connor than me, and it's easy to lapse into a clinical relationship, where they make recommendations and we blindly agree to them. I'm going to fight that tendency tomorrow.

Connor has not been doing so well this year at school. He is being picky about eating, and his weight is a constant concern of ours. I want to make a specific eating and a specific drinking goal for him, but we have to balance that with what they can accomplish at school each day. It's not like he is the only student in the class, after all.

Basically, it comes down to this - when he is at home, there is only one choice that Lee and I have, and that's to make what needs to happen for him happen. For example, if he didn't eat well at school, he HAS to eat well at home. We have no other choice. And while the IEP gives the educational team signposts and milestones, they cannot force him to accomplish them. It's not possible.

It'a a careful balance to be the dogged advocate and not alienate all the other magnificent people who help him every day.

Rededication. I found out when it started last week that there is an Infantile Spasms Awareness Week. I have been much quieter lately about Connor and his illness, it's attendant issues, and life in general. So I took to the week, deciding to post daily on facebook about IS and it's impact on our family and Connor, and the things I have learned because of it. And I received an overwhelming and incredibly loving response. I did not post these things to make people say such nice things. It made me think that maybe I've been TOO quiet, and that there was a lot of curiosity about Connor out there, and that maybe it is time for me to talk about it again. So I'm reopening Chunkin's Blog, started when he was so little, to post about his life, our life, and interesting (read: usually infuriating) things I/we are dealing with due to IS being part of our lives. Since I'm ALSO starting a new business, I will promise to blog at least once a week. It may end up being more, but I will blog once a week without fail. It's time for me to be open again. I hope you enjoy my posts, or learn something, or even better, both. Colleen

Mommy is not a good updater...

I had a very busy summer with summer school and lots of fun playing outside with my little brother, Drew. I also got a new stroller, which you can see in the photo included!

It's September now and I'm back at school in the same class I was in last year. It's like being a senior in high school, only with snacktime.

Mommy promises to concentrate more on getting updates out. Help me hold her to that!

Awesome news!

So this morning Mommy and Daddy took me to see Dr. McClintock, my brain doctor (I can't spell his real title yet!) It was a good appointment. We scheduled another EEG (brain test!!) for July, and he said that if it's a clear test, we will start scaling back on one of my regular medications! It's possible that I could be a meds-free Connor someday. How wonderful is that?

I think it's pretty cool. It's not so bad to take my medicine, but it would make life nicer not to need medicine every day. :)

So despite the rain, my outlook is SUNNY!