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Friday, March 12, 2010

Round 5

Another good visit went down yesterday in Milwaukee. Bettie seems to be getting even softer and drooping. All signs of good progress. I can't wait for two weeks from now, Addison will have her second MRI. We'll actually I'm a little hesitant since last time they strapped her down, before the anesthesia had taken full effect, she was so weak she was trying to cry but all she could do was whimper and as her little body was fighting against being taken under by the anesthesia all we could see was her little feet kicking against going under. It was heartbreaking even though we knew she wasn't in pain. And the anesthesiologist, nurse, and MRI tech did not work well together to say the least. It took about a half an hour of watching this before she finally gave in to the drugs. I heard the nurse at one point say, "Come on Addison!," in not a nice tone and I decided right then to forgo getting lunch and we would stay put right there in the room for the whole scan.
Besides the memory of last time, which this time I am demanding that I keep holding her until she falls asleep and then they can strap her down, I am excited to see the results. From her scans they are able to build a three dimensional model of Bettie and measure Bettie's volume. And then the next week we will be able to compare the volume of the first scan to the volume of this second scan. This will be a much more accurate measurement since the measurements taken with a tape measure each week are prone to human error. I can't wait to hear the official measurements!
Just when I get all excited about how things are progressing it seems that some stranger is always quick to remind me that we still have a ways to go. Like yesterday, we were waiting for our car to be pulled around at the hospital when a little boy across from us in the waiting area, probably 11 or 12, says, "Boy...she sure does have some big cheeks." And although I know he meant no harm and he followed it up by continuing to stare at her in admiration and amusement and saying, "She sure is cute." I still could not help but feel a little sting. But the stinging is getting a lot better than the first few weeks. Instead of feeling like drop kicking the kid on the spot, or just saying. "It's a tumor." And hoping he'd feel awful for asking I instead said,"It's a tumor. That's why we come here." Simple, truthful, and honest. And I was able to say it with a smile. My sadness of wishing Addison had a "normal" infancy is quickly being replaced with an on fire desire to educate people around us about hemangiomas. Educate them with the hopes that they will pass on the info. or themselves benefit from knowing that there are treatment options...you don't just have to wait.
And on a happy note. We are quickly teaching all the staff at CHW what a tunic versus a dress is. Addison's outfits are always a topic of conversation and I will confess right here that I contemplate each week what outfit she will wear on treatment day and always dress her to the nines. The last two weeks she has worn tunic with leggings. Each week people comment on her darling dress which last week Ryan was quick to inform the nurse that it was a tunic not a dress as he had learned earlier that morning. So this week that same nurse came in and brought up what a cute tunic she was wearing this week, she's a quick study. From there it went on and on with various members of the staff until our research fellow, Anna, challenged Dr. Drolet to name what Addison was wearing. She was quickly reprimanded for thinking it was dress. It's fun conversations and such a friendly environment like this that make us so thankful that Addison in being treated at CHW. We keep remarking, "Everyone is SO nice."
Addison is also a star when it comes to receiving her treatment and getting her dressing changes. Most appointments she falls asleep at least a couple of times during the appointment. This week was no different, she fell asleep right on the table during her dressing change. Everyone comments on how calm she is and how she's so easy, she doesn't squirm or whip her arm around like a lot of the kids. Of course we can' t help but smile at a compliment like that.

Saturday, March 6, 2010

Round 4

Well another week has come and gone and once again we made it down and back to Milwaukee. Addison's treatments are going really well. Dr. Drolet was gone and she's the one who normally does the measurements so the one's we received this time aren't all that exact. Dr. Kelly's measurements showed another 1 cm decrease, and Dr. Juern (research fellow) showed the same measurements as last week. The variation in measurements is due to everyone going by different landmarks on her face. That's why they like to have the same person take the measurements week after week. So next week we'll get some substantial feedback on reduction when Dr. Drolet is back in town. Dr. Kelly did say he was very happy with the progress she is making. He feels like Bettie is even squishier this week, like a "bag of worms." We took that as good news.

(Looking at the pictures I can tell she doesn't like when we tilt her head back to get a picture. Every time we do she squawks and the pictures show it. )

I am a little disappointed as it seems like everyone else can tell a difference in Bettie but I can't. I do see a little improvement and I am getting more glimpses of her neck which before was covered by Bettie. But overall I don't see it going down as drastically as other people say it is. I chalk it up to seeing her everyday where others see her once a week or so. I hope soon to see the big change.

Tuesday, March 2, 2010

Round 3

We got great news this week when we went to Children's... Bettie is shrinking. The official measurement was 1cm. Yippee, we've gone from 64 sq cm to 49. The Dr.'s both asked if we could see the improvement. We thought we could but then again we didn't know if it was just wishful thinking. Our dermatologist said she knew it had decreased just by looking at her across the room. What a great day! This weeks progress pictures. There was a lot of drainage from her PICC insertion but the nurse confirmed what we had thought. It was probably from her moving her arm around so much. After all, this week she discovered her arms and that they are good at batting objects.