The wonderful thing about Tiggors...

It's Halloween!

I wasn't too happy about being Tigger again, so I renamed him Tiggor - closer to my own name!! Next year, I am going to be something else. Mommy is thinking maybe an alligator. We'll see. If I am walking by then, I'll be a marathoner, just like my Daddy and my Aunt Shannon. (Thanks for the shout-out A-S, in your post-'thon recap)

I hope you enjoy my movie, too. I'm ready for my close-up, Mr. DeMille...

http://www.leeandcolleen.com/Images/MVI_0014.AVI

Tiggor - aka Connor

I stand in the face of danger

Okay, so Connor wasn't totally into the stander this weekend, but he did very well. He stood for 15 minutes on Saturday, and engaged with the toys I held for him. I gave him pudding as a reward, but that was after he was out of the stander (which is why his face is still so clean.)

He also stood on Sunday and Monday, and has done really well.

We are still battling with the insurance companies as they are not doing their jobs paying for his therapy. I avoided Human Resources in my career so that I wouldn't have to deal with Health Benefits. Health Benefits, however, appears to have decided that it wants to deal with me. I feel lucky and blessed. Not really.

In any case, not much else is going on - just getting ready to take the month of November off - maybe I could catch up on my sleep??

On his own two feet

This week, Megan (the physical therapist) brought a BIG new toy for Connor to work with. It's called a stander, and for lack of a better way to describe it, it looks like the cart they wheeled Hannibal Lechter around on in "Silence of the Lambs" (I'll have...the laaaaaaaaaaaaaahmb). Anyway, the stander is designed to strap across his chest, hips and knees. Once in it, Connor's hip joints get all kinds of new stimulation, for growth, and strengthening, and balance. It's a great, if kind of large, tool.

So last night, Lee decided that before dinner would be stander-time. That lasted three very long, very screamy minutes. We pulled him out and calmed him down, and went immediately on to dinner. After dinner, it was a completely different story. He stood in the stander for more than 5 minutes, looking around and calm. The moral of the story - feeding Connor needs to always be the first thing :)

The amazing thing is, I didn't realize how tall he is until he was standing up. We'll take a picture tonight if he's not Screamy McScreamerson again and I'll post it so the rest of the world can see how tall my boy is!

Photograph

I don't want ya...I don't need ya...all I got is a photograph...

Tomorrow morning, Connor will have his first formal photograph taken at school. We opted out last year because, well, because we were scared of our reactions to the pictures of him not connecting with the photographer. I won't paint it any other color - it's hard to be around 104 healthy little children who connect with everyone and pick up the 105th, who is Connor. He's blossomed a lot in the last year and his teachers have a plan in place to get him into the process and engaged. And this morning, as I dropped his stuff off in his classroom, I saw a series of photos that they made into a little book of Connor fingerpainting. They actually have the pictures of him painting glued to the paintings themselves. And in the last picture, he is looking up over his shoulder at one of his teachers, Ms. Tiffani, and it's just a lovely photo of him making the connection with her and with what he is doing.

Or at least it looks that way in the photograph. They tell a thousand words, supposedly.

Supercuts

Chunkin has always been blessed with a full head of hair. The day he was born, he had this hair...

So here's the thing - with his lack of 100% head control, and his healthy follicles, he needs to get his hair cut, but he can't go to a Kids Cutz or whatever. I have to do it myself. I won't let Lee do it because he cuts the bangs so short Connor ends up with a painful Prince Valiant-ish looking thing. So it's up to me, and I don't mind, but yesterday I was giving him a trim and nicked his ear. LOTS of crying. LOTS of screaming in between wails of what we now call "immunization cries". Even a teeny bit of blood. And, of course, LOTS of guilt on my part. 24 hours later, you can't even tell that anything happened at all. The haircut is also finished, and it's one of the better jobs I've done. I'll post a photo of the new 'do as soon as we've taken a photo of him in it.

Another Chunkin picture

He's just too cute - I had to post another ...

Bad blogger

I know I should be better about updating this, but I had a hard week followed by a business trip. Business trips are fun because, while it may be cheesy, I actually really like the people I work with. Yes, Mom, that is a dangling preposition. It's my blog. Anyway, I had to be away for a few days, and my brother came to visit in my absence. I hated missing him, but I'll get to see him tonight and maybe some tomorrow. Connor, luckily, thrived and had a lovely time eating. And eating. And eating. Apparently that's his new thing. Which is great, although we've been warned by both Dr. Fox (see the first report blog entry on who he is and how awesome) and his physical therapist, Megan, to keep his weight growth along the percentage course he is on right now( 20th percentile). That way, he can't grow too fast and make therapy impossible to perform.

In any case, since I've come home he's stopped his Sherman's-March-Through-The-Fridge somewhat, but hopefully that's only so he can coo at me adoringly...

More details on Connor's tests

1. MRI - Changes
There were some white matter changes. (note - white matter v. gray matter: Gray matter represents information processing centers in the brain, and white matter represents the network or connections between those processing centers.) These changes are referred to as Periventricular Leukomalacia (PVL). I've looked up PVL on WebMD and this is part of the description: PVL is a condition in which the brain tissue around the ventricles is damaged, possibly from decreased oxygen or blood flow to the brain that may have occurred before, during, or after delivery. I literally just looked this up and am now quite concerned. We put off delivering him for hours after a heart rate decrease while I was in labor. Anyway, back to the report. Dr. Fox's interpretation of the PVL change is that it is likely that Connor will have significant delays his whole life. Dr. McClintock's interpretation is that the PVL is not consistent with "white matter issues" and thought that the new situation was unrelated to his IS. He wants to repeat the MRI next September to see if there are further changes.

2. Corpus Calossum (Connects right and left hemisphere to allow for communication between the hemispheres. Forms roof of the lateral and third ventricles.)

Dr. Fox spoke to us of seeing some "hypoplasia" which is defined thusly: "A medical condition where an organ or tissue has less than the normal amount of cells that it needs to fully develop. Such an organ or tissue is smaller in size than normal. Destruction of part of an organ or tissue which results in its becoming atrophied. Any plant disease which results in lower than normal numbers of cells being produced, so that the plant is unable to fully develop its organs and/or tissues." He said it appears only on one part of Connor's Corpus Colossum, and had no interpretation. Dr. McClintock did not mention this at all, and I can only assume because he doesn't think it's related?

3. MECP2 Gene mapping
Dr. McClintock had a blood test run to check the MCEP2 gene for Connor. Apparently it's related to Rett Syndrome, which we have heard from the neurogeneticist. You can learn more about Rett Syndrome here: http://ghr.nlm.nih.gov/condition=rettsyndrome. It's something that normally affects females, and he tested completely clear there. Dr. McClintock seemed to think that this would give us an indiction of his finer motor skills with his hands. I can't figure out why. I'll ask the neurogeneticist.