Big Day

I mean HUGE!!! Today, Connor sat independently on Tiffany's lap. For almost a full minute (which for Connor is a long, long time) (and also, Tiffany is one of his two teachers at day care). He sat on her lap and was able to balance himself. We are overexcited about this - he is taking it in stride much better. :)
In any case, Happy New Year to all of you who check this site - we'll post some NYE photos as soon as possible - hopefully with some independent sitting!!!

Swing low...sweet beanbag chair

Connor's first Christmas presents have rolled in. He got a swing and stand from his grandparents and it takes up a bit more space than we'd initially anticipated inside. Lucky for us it's an indoor-outdoor piece. If only it were light enough when we got home, we could swing for a few minutes! That will have to wait for March, or so. In the meantime, we can bundle him up on weekends and let him swing for a few minutes, and then come back inside and warm him up by cuddling him in the beanbag chair which he got from his grandparents on the other side! The swing is helping him learn balance, and that carries right into the beanbag chair, where if he shifts, he changes his balance! I'm sure he never thought that sitting down would be therapy, but there you have it...

I'll take some pictures of him in both the swing and chair in the next few days once the fam's arrived for the holidays and there will be extra hands on deck!

To see the world in glorious technicolor...

Well, a week of patience paid off. The house is painted and mostly put back together, we're just waiting for the last spaces to go from 'potentially tacky' (as in dryness, not lack of taste) to 'yeah, okay, totally dry'. Our house is now full of color! In some rooms, it's more like COLOR!! Our kitchen was a dark blue before - not navy, but highly saturated, grayed-down cornflower blue. Now it's green. I mean, green! Kermit green. It's not that easy being green when you are a kitchen, apparently. Something about having to spend the days the color of the leaves and not some splashy, like stars in the sky.

In any case, if you can't come see it in person, you should be able to see some new pictures at our website, www.leeandcolleen.com. I'm pretty sure Lee is putting them up as I blog...

Hallelujah!

We did it. We fought and fought and fought...and now it's finally happened. The insurance companies have paid. THEY HAVE PAID. They have finally paid his doctor appointments. They have finally paid his therapists. Finally.

It's an early Christmas for the Wrights. :)

No more bottles!

Connor has taken a big step - he is officially OFF THE BOTTLE! Sure, it's a little late, but we've finally gotten him there. Most of the credit goes to Lee, who is meaner than me when it comes to this. He fought through Connor's reluctance, spitting, refusals, and general crankiness. I was too soft for this, but I'm glad it happened.

Of course, give him 14 years, and he'll be all about the bottle again. But then, I hope, there will be no nipples, crosscut or otherwise...

Good-bye, old paint

So in the past few months, I have been possessed of changing the inside colors of my house. This week, my latest dream will start to come true. Almost all the rooms in our house are going to be painted. Simultaneously. We'll be living in the basement, all three of us. Shadow is going to have to go live with Erin, or there'll be her lovely fur dried into the paint. They say it will only take a week! We'll see...When it's all done, I'll post photos of the "new" house up for everyone.

And, to top it off, today it SNOWED!! I love snow. It's just so much fun. It doesn't have to stick. Just look pretty. Of course, tomorrow morning I am headed south to Atlanta - no snow there. I'm glad I was here for today's pretty, quiet snowfall.

Peanuts

For an early Christmas present, Connor received a peanut ball. It looks (no surprise here) like a peanut, will bulbous ends and a narrow middle. Although the resemblance ends there, as I don't know who would want to eat a giant blue rubber peanut. In any case, we used it for the first time yesterday at therapy. He is not a fan. He has to use it to sit on - straddling the peanut at the narrow-middle point - to work on his sitting and head control. It makes him work very hard, and Connor just isn't into that kind of physical work. Then again, few people are. We also had him kneel (not his favorite thing to do) and lean on the ball with his elbows. This was slightly better received.
In addition to that particular torture, we also started using Chewy Sticks yesterday. Again, exactly as they sound. Chewy rubber tubes that we place in the sides of his mouth to help him increase his jaw strength. This went much better. Kristy, his speech therapist, was impressed that he so rapidly started gnawing on the tube. I, however, was unsurprised. If you put anything in this kiddo's mouth, he will chomp down. Heck, even on my birthday, he managed to bite me on my chin. I had a welt on my chin for almost an hour. I think his jaw strength is fine (especially after my birthday) but I'm not the professional here.
So, on to the weekend and next week!

Back to the grind...

Well, there was only so much time I could take before I ended up back in the proverbial saddle. Today marked my first day back to work, and it was really quite good. People seemed happy to see me, I think. I discovered how fast your feet forget, though. By lunchtime, my feet were KILLING me from wearing heels. Seriously. Got out the little wooden roll-y thing I keep in my office for foot massage. And it only worked to a certain degree. I'm considering hauling out the foot spa for a little relaxation.

Connor went back to day care full time today. It went well, from what I understand on his daily sheet. I saw a picture of him working on a painting with Miss Makina, one of the two teachers in his class. His last molar FINALLY started it's slow descent on Wednesday last week, so now Connor has at least part of all his teeth for the first 2 years. While the drool production is up again, I am glad that the molar is in so that we can work more on his chewing.

Well, that's all for now. I have some dishes to do, some thank you notes to write, and some laundry to fold. And then, some feet to massage.....

Assistive Devices for Connor

So last week, in the midst of my recuperation, a nice man came to the house to measure Connor for a stander. The one we have is old, and only a loaner. They (the PIE Program, Early Intervention for Arlington County) are pruchasing one for Connor, so we'll have shiny new one that looks less Luddite. It's called the Giraffe, and is a prduct of Sammons Preston (www.sammonspreston.com). WE aslo took Connor to the therapy center where both his speech and physical therapists work to try out some swings. My parents are going to buy one swing for Connor and build the other. My parents take better care of Connor than I do most of the time. Of course, I'm still not even allowed to pick him up and am at my mother's mercy when it comes to holding him!

More Tiggors

I've gotten some happier pictures of Connor on Halloween and wanted everyone to know that he's actually okay with the costume :)

I rise...

Sorry for the lack of information - I've been in the hospital being repaired, and I'm happy to say that this time, it worked! I'm supposedly all fixed up. YAY!!!!!!!!!!!!! There is, in fact, much rejoicing! The worst part of the surgery, other than the lack of eating for 5 days, was that I was not allowed to see Connor. :( Lee brought me videos of him to try and assuage my sadness. It was wonderful to get home and see him again. He's had a lovely time with his Daddy and Granny Kate, and on Saturday his Nana and Poppy came to see him as well.

In any case, I'm still "in recovery" and get tired way faster than I used to, so that's all for now. Tomorrow I'll try to muster the energy to post about his new stander that will be ordered soon and is less Luddite than the Lechter-Special we have now...

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.

Doctor, Doctor - give me the news!

Okay, so the news is in, and it's not good, not bad, not really indicative of anything.

Connor's MRI showed some new "changes". We spoke with Dr. Fox first. Dr. Fox is Connor's pediatrician and possibly my favorite person outside my family. He has truly invested himself into Connor's well being. We will never move as long as Dr. Fox is here and willing to be Connor's doctor. He told us the results and gave us, to be honest, a pretty grim view on the long-term possibilities for Connor. His call was immediately followed by one from Dr. McClintock, Connor's pediatric neurologist. His description of the results were identical. His interpretation, the opposite. He believes that the "changes" that took place are not related to nor affect Connor's condition, and said that the Magnetic Spectroscopy was good. So basically, Connor's brain isn't completely normal, but we knew that already. And we are still encouraged by his progress (see previous posting regarding his hands). So - status quo. We've got no closure, but we've also still got reason to believe and hope for the best!

Comedy of the absurd, anyone?

I've missed the third call now, and I had my cell phone with me. Now his pediatrician is in on this and has the report, but has the wrong phone number for us at home and so spent last night calling and getting ring...ring...ring...So he called my office, while I was out trolling, and I missed the call.

Maybe we just aren't supposed to know the results of this test series?

Chunkin, a Hands-On little boy

So, I missed the doctor's call yesterday. Connor told me the whole way home how uncool it was of me to miss the call. It's not my fault! My cell phone lost signal in my office. My excuses meant nothing to him. He guh-ed at me the whole way out Constitution and 66.

Connor has started to do something very significant - he tries to eat his fists ALL THE TIME now. It's like his hands are chocolate-flavored, which in all honesty they sometimes are, thanks to pudding. But this hand awareness is a major, major cognitive development for him. It took a little time to get used to it. Let's say it this way - he used to be WAY easier to keep clean! But even when he smears peas up into his eyebrows, I am now delighted because it means he's figuring out how those things at the ends of his arms can work for him. he even uses his arms and hands to push some more when he has tummy time, too. Could crawling come? We're not sure, but we are hopeful. And we leave him on his tummy for way more time than he has any interest in. So to calm him down, we give him pudding...

Why waiting is hard

Chunkin has a problem. Most of you already know this, of course. 2 weeks ago my mother and I took him to Children's Hospital for some tests. We still have not heard the results. These tests are an MRI (Magnetic Resonance Image - I think that's the meaning behind the acronym) and a Magnetic Spectroscopy. I have gotten uninforming voicemail messages from his neurologist, but nothing final. The last time he had an MRI, I got the results call in 4 days and was driving down 66 on my way home from a shopping expedition. The news was good - his brain was completely normal in form. I called Lee and started to cry, and he may have, too. Then I called my parents and they may have, also. Luckily, I was able to pull off the highway very soon after the call.

And now with each day that passes, I try to gird myself for the worst news from his doctor. I can wait forever for my own results. Why am I having to wait for Connor's?

I love the taste of napalm in the morning...

This morning was interesting. See, I have this problem with my lower intestines, apparently, and I'm having some surgery soon. I haven't really been bothered, but the doctor says I have to, or I could risk doing nasty things to myself, like sending myself into sepsis. Anyway, one of the prep tests I had to do was "an Upper GI" What does that mean? It means I got to get up, NOT eat or drink anything, not even brush my teeth, and then wait until 10:00 am when they gave my 100mL of a thick, white substance known as Barium. Ring a bell? Barium is an element. You can find out *actual* things about barium here: http://www.scescape.net/~woods/elements/barium.html

Here's the thing - I was really, really bad at chemistry, but I'm pretty certain I remember Mrs. Webster telling us about radioactivity in elements like barium. Then I read something like this...
"All barium compounds that are water or acid soluble are poisonous. Naturally occurring barium is a mixture of seven stable isotopes. Twenty two other radioactive isotopes are known to exist."
I am also relatively sure that the berry flavor was never mentioned.

So I drank a lovely 100mL cocktail of radioactivity this morning. Then I chased it with 350mL, then I waited about 45 minutes and then got to watch them take "fluoros" of my small intestine. And it was...so...freaking...cool! Do you think about your body? Do you think about it as a solid thing? Let me tell you, I was watching my intestines, showing up black in the fluoro thanks to the Barium-mopolitan, swish gently back and forth as they pushed around on my stomach with a very cool lead-lined glove with a paddle attached. My body moves on the inside. All the time! Not just the blood. Basically everything that isn't a bone is moving, shifting, finding it's best home for a moment before I change position and gravity grapples with the confines of my skin.

It's amazing what you can learn about yourself when your body decides that if you won't give it a break, it will just mutinously decide to cut you off at the knees. I kind of wish that I could have seen more of me work under that camera, but that would require, among other things, a whole lot more barium. And while I like the berry flavor all right, I'll admit that I left the doctor's office and stopped at McDonald's for lunch. I figured that I desereved a break today. Plus I wanted to give them my new idea for their milkshakes...

Meet Chunkin

This is Chunkin. He was first called the Baby Fantastic, Curtis and Squash (all pre-birth names) and then became Punkin Chunkin, then just Chunkin. What a great smile he has! We love when he smiles and giggles with us.

Urgh...

So I've had my first spammer already. Less than 24 hours. I've set up the word verification system so I can avoid more spamming comments in the future. Sorry, all. You have to flash your ID to get any words in on this blog...

Not so good with the posting yet...

Okay, so I really didn't post a long report last night. As I told Erin, Lee left me with no wireless in the house this week, and I didn't feel like spelunking in the basement to come up with something to post. So here I am today, doing it when I should be working. Again.

Lee comes home from school tomorrow - just in time for him to get caught in a 100,000+ person anti-war and anti-IMF protest on the National Mall. One of the best parts of living in this area is that you get slammed with protests at the drop of a hat. If it isn't traffic slowing you down, it's road closures due to "marching". I drove him in on Sunday last week to school and we were felled by...a march going up Calvert Street, NW. Not just any march - a disabled persons march. So it wasn't much of a march so much as a parade. Either way, we'll be getting it at the drop off and the pick up this time. I am glad that after this week, Lee has to drive himself to and from school!

Connor's teachers at school yesterday gave him some of a sundae from McDonald's. I hope I won't get in trouble with their corporate office by using the name. I'm not sure how I feel about him starting down the fast-food route. At least it wasn't fries, though. He'd probably stop eating anything else if it were fries. Silly, yummy, addictive fries... Mmmmmmmm...I can't wait for lunch!

It's alive!

Okay, now that I know it works, I will add more later once I get home. back to work for now...

Welcome to our blog! My husband and I have a website, but he's the webmaster, and unfortunately also now an MBA student. As such, I've decided (unilaterally) to start blogging to get news out on Connor's progress, because even I can blog. :) I hope I can... If this works, I will blog more soon, I very much promise.