Posts filed under 'Holidays'
Dear Mama,
I love you so much!
Thank you for your smile and for all the hugs and especially the snuggles. Thank you for reading me books and playing games, for taking me on adventures, and even for the tickles. Thank you for letting me eat yogurt and cookies and beets and green beans. Thank you for helping me wake up when I’ve had a bad dream, and for coming and sleeping in my room when I’m not feeling well.
Thank you for spending so much time with me. I love being around you so much! Thank you for teaching me to do things with my left — I know that’s important even if it makes me frustrated sometimes. Thank you for your confidence in me, and for teaching me how to be big and good.
I hope someday I can be as big and good as you.
I love you Mama.
Anna Rose
May 11th, 2008
October? That’s the last time we’ve posted anything here. Seriously? Isn’t that a bit too long? Our bad. Boy howdy is it going to be hard to catch up, since so much has happened. November happened. December happened. January is in full swing. But here goes!
November
November was hard. Anna took part in her second casting session at Children’s Hospital in Denver. Which meant lots of miles and lots of hours in the new car for Tara and the girl. Three times a week Anna met with physical therapists at the hospital for “play time”. And then of course there was the cast she wore for all her waking hours for 20 straight days. The good doctors at Children’s also decided to try some Botox in Anna’s left forearm, in the hopes that it would help her work on turning her hand over palm-side up.
During this time it’s hard to say any of us were especially happy, for reasons that are probably obvious. And the results of all her therapy, while positive (she is able to turn her hand over more, she’s doing more with both hands, she’s way more dexterous with her left hand when casted, etc.), were far less dramatic than we’d seen the first time we participated in the therapy program. Progress, it seems, is now being measured in feet rather than miles.
It was a struggle and a great relief to make it through to Thanksgiving. Finally the damn cast came off! And while the airplane trip out and back as just as interesting and challenging as you’d expect it to be with a 21-month old, we did have a wonderful vacation out in Kansas. Anna loves her family there, and still talks daily about some of the fun she had.
December
December’s always crazy. But we managed to get our (fake) tree up, some lights on the house, and the Christmas music playlist rolling early this year. Anna started to make the kinds of Christmas associations that will probably turn her into a crazed, present-hungry, darling little monster between ages 3 and 12. Santa is “Ho Ho”, the ornaments on the tree remained fascinating for weeks, and candy canes, she discovered, are just about delicious. Cookies seem more available and more easily accessible for someone her age during this time of year, and lots of her toys and books got an update.
My brother made it out for the holiday, and it was great to spend some time with him and my folks. Also fantastic to see our Denver relative a couple of times — for whatever reason we’re not seeing them enough these days.
I have no idea how Tara managed it, but we did end up getting a holiday card out the door to folks on a few days after Christmas. Go team!
January
Recovery mode. Trying to catch up on some alone time with just ourselves. Trying to get back into the swing of things at work.
Anna’s doing just great. She’s “talking” up a storm. Mostly a lot of babbling, but in our experience that stuff usually precedes breakthroughs. She’s improving her pronunciation and speaking individual words much more clearly now, and she’s started doing an occasional two-word sentence (e.g. “Momma sit”, “Daddy move”, etc.). Anna’s increasingly more interested in the whole potty-training thing (also a big focus at daycare), and she’s making some progress there too! The girl has also been fairly healthy of late (knock on wood), which we attribute in large part to a switch from cow’s milk to soy milk for most of her daily milk consumption.
Tara’s working an extra half day now, which is a Good Thing since it means she’s less stressed about finding time in the late evenings to complete her “half time plus” assignment. This means Ms. Rose is spending a bit more time in daycare, but honestly she’s loving it. They’ve moved her up to a new room (somewhat ahead of schedule, I’ll add), and she seems to be happy as a clam with the bigger kids and all the new activities and toys and games. Last Wednesday was a bit of a milestone: The girl seemed somewhat reluctant to leave daycare and the plastic milk carton she and her friends were playing with at the time.
We’re also now starting to seriously look ahead to the Alabama trip in February. Notice I said look “ahead”, not look “forward”. For those of you not up-to-speed: We’ll be moving to Birmingham for four full weeks, during which time Anna will participate in an intensive constraint therapy program. “Intensive” means three full weeks of 24/7 full-arm casting, with therapy 6 hours a day for 6 days a week.
Frankly, I think we’re both a bit terrified about all that entails. (Anna, bless her heart, has no idea yet what’s in store…). But the flights are booked and we’ve confirmed we have a place to stay. Some good news: Tara’s mom will be coming out in the third week to help out while I return for a few days to put in some face time at work (thanks Debbie!).
Whew. That’s all for now. I know we’ve got pictures to post, but hopefully we’ll try to be more regular about those kinds of things in the near future.
How have you been?
January 20th, 2008
I posted some pictures we had taken recently of Anna and Henry in their Halloween costumes. I’ve got some other photos to post, but I have to get them off of the camera first. Too few hours in the day.
We had Anna’s neurology appointment on Monday, as well as her preliminary evaluation for this second round of constraint therapy. The neurologist thought Anna looked great, and commented on the fact that if you didn’t know Anna had hemiparesis, you couldn’t really tell. Whereas this is GREAT news, it is going to turn into the bane of our existence vis a vis receiving medical services. Anna still has quite a ways to go in terms of her therapy, but we are reaching a point where the medical community says “oh, she’s functional, so we aren’t going to treat her anymore.” It hasn’t happened yet, but I’m seeing that as an issue coming up.
The OT at Children’s who will be working with us during this next round of constraint therapy believes the botox injections could really help Anna gain more functioning in her left arm/hand, so we will be proceeding with the treatment. This is not really a cut-and-dry decision for us. Because Anna’s tightness is more in the deep tissue of her shoulder and smaller muscles in her forearm, the botox injections will be a bit tricky. There is no way that the doctor is able to help the tightness in the deep muscle tissue, but she can do an injection in her forearm. These smaller muscles are harder to isolate and if she is not precise in her injection, she could end up causing decreased functioning in her fingers (for grasping). Of course, if this happens the constraint therapy is really going to be difficult to continue. I’m of the opinion that if her fingers are affected by the botox, we will call off this round of constraint therapy completely. The OT believes there are still gains that can be made, even if her grasping is affected…but at what cost!? A completely frustrated little girl? I don’t think so.
Neal is rightfully concerned that if the botox does affect her grasp that we may lose ground during the time that the medicine is blocking the signals to the brain (botox’s effects usually lasts about 3-4 months). She is beginning to use her left so much in her daily life (unprompted, no less), it would be a shame to see her disregard it once again. Needless to say, we are quite nervous about the procedure. Not only are we injecting a dangerous neurotoxin into our baby-girl’s arm, we are also exposing her to the risk of decreased functioning of her left hand. To minimize the risk of an unintended muscle being injected, the doctor will use an electronic stimulator on her needle, which will show her which muscle she is in contact with. I’m not sure how this will work, but I’m sure we will learn soon enough. Anyway, it is not an easy decision. These are the times you can’t help but think about how unfair life can be.
October 30th, 2007
Dear Mama,
I love you so much!
Thank you for your smile and for all the hugs and especially the snuggles. Thank you for reading me books and playing games, for taking me on adventures, and even for the tickles. Thank you for letting me eat yogurt and cookies and beets and green beans. Thank you for helping me wake up when I’ve had a bad dream, and for coming and sleeping in my room when I’m not feeling well.
Thank you for spending so much time with me. You are my very favorite person. Thank you for teaching me to do things with my left — I know that’s important even if it makes me frustrated sometimes. Thank you for your confidence in me, and for teaching me how to be big and good.
I hope someday I can be as big and good as you.
I hope you have a happy day!
Love,
Anna Rose
May 13th, 2007
Tara just posted a whole bunch of new photos, including some from Easter. Ms. Anna looks especially cute in her Easter dress. (Thanks Granny!)
Anna’s been doing really well lately. We’re seeing her use her left hand more and more each day, and the girl is really starting to think about walking. She can already stand by herself for as much as 10 seconds at a time! Her growing vocabulary includes such favorites as dog (”dahg”), cat (”at”), ball (”ba”), balloon (”ba”), up (”bap”), mom (”mama”) and dad (”ba”). (Context is key here, obviously).
Most importantly, she’s been generally healthy (knock on wood!) and happy. Or as happy as anyone cutting as many new teeth as she is can be.
Note: I’ve changed the way the photos on the sidebar work. First, there are more of them, and clicking on them should now take you directly to our Flickr site where you can view all our photos in different galleries and sizes. Whee!
April 16th, 2007