Archive for March, 2007
I miss Ben terribly.
For me, all anniversaries this past year have been somewhat bittersweet, knowing that each day takes us closer to today, the anniversary of Ben’s passing.
Nothing about Ben’s illness and passing makes sense to me, even a year later. What purpose is there in taking the life of a six-year-old child? Why did this have to happen to such deeply good and good-hearted people as Dean and Melinda? Why forever burden Madie with the passing of her older brother? I just don’t understand.
I do know that memories of Ben will always be a treasure. He was such a happy, good-natured, kind, and intelligent child. He brought such great joy to those who knew him. His smile, his laugh, his voice, the way he ran and played. These memories will always make me grin, and then miss him even more.
We love you Ben. Thank you for the joy you brought us. Thank you for spending as much time here with us as you could. And thank you for watching over your sisters, your parents, your cousins, and the rest of your family.
Because we know you do.
Note: The Steadman family will be hosting “A Celebration Of Ben” at 2:00 PM on Sunday, April 1st out at the memorial garden at the Anschutz Cancer Pavilion at University Hospital. Check out their blog for more information.
Note: The title of this posting is taken from lyrics in the wonderful “Ben’s Song”, written and performed by the guys and gals of 72 Hour Hold (formerly The Sleepless Knights), a local police band. You can hear the song on their site. (Windows Media Player required. Two songs will start playing automatically. “Ben’s Song” is run by the controls on the left).
March 29th, 2007
Here are some short movies that we’ve wanted to share, but haven’t had the time to convert to a more reasonable format.
The first two are from Anna’s first birthday party (3/11/2007). She wasn’t quite sure of the singing and she certainly wasn’t sure of the cake. Birthday song (4.5MB) and Let her eat cake (2.3MB).
The third movie is an illustration of the crazy things we parents do to make our children “do” something for the camera. Anna started “babbling” in a way that made her sound like she was literally speaking a foreign language. Neal carried on a “conversation” with her which lasted much longer than this clip. Enjoy… Anna speaks Dirka (5.9MB on 3/17/2007).
March 27th, 2007
We completed our first week of casting therapy!! We’ve had 2 formal therapy sessions down at Children’s and two more sessions here at the house. Needless to say, we’re glad it is the weekend! Two more weeks and 9 or 10 more sessions to go.
Anna has tolerated the cast quite well. We leave it on all day and remove it right after dinner in the evening. She doesn’t have to wear it at night – thank God. She generally fusses and gives me dirty looks during the first 30 minutes to 1 hour after I put the cast on, but then she’s back to her happy self. Most of the therapy we do revolves around eating. That means we get 4 opportunities for very focused therapy each day (meals plus snack time). It is hard to keep a 1-year-old “on task” when doing play therapy. We do an activity for about 5 minutes and she’s ready to move onto something else. Eating, on the other hand, takes advantage of her motivation. We can spend 45 minutes to an hour doing the same thing over and over and over again, and she doesn’t really tire of it until she’s full!
I know it has only been a week, but we’re already noticing progress! When we started this therapy Anna was able to spoon-feed herself (sort of) using her left hand (see movie from a few weeks ago). She could also hold a biter biscuit (long cookie, for those of you who are unfamiliar with what a biter biscuit is) in her left hand, but often forgot it was there after a few nibbles and it ended up falling out of her hand. She was unable to pick up food items off her tray – no matter the size. That was so last week.
I’m pleased to report that Anna is spoon-feeding herself with her left; holding the biter biscuit in her left hand, dipping it in yogurt, putting it in her mouth, and repeating the process over and over; and picking up puffs (think cheerios) with her thumb and index finger and actually getting them to her mouth on her own (hit or miss on the getting them to her mouth, but progress nonetheless). All I can say is “WOW!”
Anna’s regular OT was extremely impressed with her progress. She was stunned at how much was accomplished in just one week’s time. And I think Anna’s OT down at Children’s was a little taken aback at how quickly Anna had picked up these skills (obviously she doesn’t know Anna, huh?). Of course, there is still a long way to go, but we are so encouraged by these small steps! We’ll be sure to keep you posted on her progress during the next 2 weeks. I hope we’ll have even more to report.
March 23rd, 2007
Anna had her first full-day of casting today, and we’re pleased to say that it went well. She was really pretty bent for the first 30 minutes or so after we put it on this morning, but seemed to adjust well thereafter. Anna was just getting to the stage where she didn’t need constant attention while playing or eating; with the cast it feels like we’ve been transported back several months. She pretty much always needs someone there to help her grasp toys or read books. And mealtimes are a true challenge! She’s independent enough that she wants to feed herself all the time now, but she becomes incredibly frustrated when she isn’t able to do it with her left hand. With a little help from Mom and Dad, she’s able to have some success, however. I’m anxious for her “formal” therapy to begin on Monday. I would like to know what types of activities will have the most impact. I feel a bit like I’m flying blind.
I uploaded a couple of pictures I took today. Anna was eating a biter biscuit with her left hand. I included one that shows what her cast looks like, for those who are interested. It was beautiful weather here in Colorado, and Anna and Dad spent some time outside today (thus the hat).
March 17th, 2007
Today we journeyed down to Children’s Hospital to have Anna’s cast made. It was a tramatic experience for Anna (and for me! She looked at me as if to say, “Why are you letting them do this to me?”). For those of you who do not know, we are casting Anna’s right hand to encourage the use of her left. During the next three weeks we will be doing intensive therapy using her left hand. We’ll be attending therapy at Children’s three days a week and we’ll be continuing our normal therapy sessions here at home. Needless to say it will be a busy time for us.
This weekend will be an adjustment period during which Anna will hopefully become more accustomed to having the cast on. Seeing her with her dominant hand out of the picture today made me realize how far we’ve come, and yet how far we have to go in regards to the functioning of her left hand. It was something of a reality check for me. I think it caught me unawares. Her evaluation at Children’s added to that reality check; the doctors/therapists spelled out what Anna’s issues were in a rather clinical way. It all sounded so negative. As to be expected, they were evaluating her from this point in time, without regard to how far Anna has come in the last 4 months since we started her therapy. For some reason it was hard to hear.
As if getting your dominant hand casted were not enough, we had Anna’s 12-month check-up today (and no, I didn’t plan on having both of these events happen on the same day!). Everything about her development looks good. She still doesn’t weigh enough for us to be able to turn her car seat around (darn). In fact, the doctor was still a bit concerned about her weight gain. She’s fallen into the 25th percentile in her weight – 19 lbs. 12 oz. She holding strong to the 90-95th percentile for height, however (31 1/2 inches). Some of her meager weight gain may be due to the fact that she’s had a stomach/intestinal bug this last week. I won’t go into detail…suffice it to say, carseats are not meant to handle vomit. Anna also has developed another ear infection in her right ear. So we’re back on the antibiotics. Silver lining: no shots today because she has an infection.
I posted a ton of pictures from Anna’s birthday party and Granny and Papa Rex’s visit to Colorado. I’ll work on posting some short movies of Anna eating her cake and such.
March 16th, 2007
One year ago today you were born, little one, and what an amazing year it’s been.
You’ve learned so much in these past few months: How to breathe, how to cry, how to nurse, how to burp, how to roll over, how to sit without falling over, how to sleep through the night, how to laugh, how to babble, how to giggle when tickled, how to drink from a bottle, how to say mama and dada, how to make the signs for food, milk, and the cat, how to sit up all by your self, how to crawl, how to stand up, how to make friends, how to play with toys, how to read books, how to grow teeth and just a very little bit of hair, how to snuggle, how to eat grown-up food, how to find your way across the room, how to cruise around the coffee table, how to climb stairs, how to clap, how to pick up things with your left hand, how to wave like a princess, how to blow big smacking kisses across the room, how to give hugs, how to give kisses, and how to light up an entire room with your beautiful smile.
And we’ve learned so much too: How to give birth, how to change diapers, how to give baths, how to dress tiny babies in tiny clothes, how to install car seats and baby gates, how to nurse, how to burp a baby, how to make a little girl smile, how to function on very little sleep, how to make a bottle, how to make breakfast, how to teach a baby to stretch, clap, sit up, eat, crawl, stand, sleep through the night, and climb stairs, how to cope with the fears all parents face, how to sing, how to distract, how to be more organized and not worry about when we aren’t, how to be more patient, how to love each other when we’re under fire, and how to love you, unconditionally, always and forever, for you are the most wonderful and rewarding thing in our lives.
Thank you, Anna, for joining our family and for and teaching us so much. Happy birthday, dearest girl. We love you.
March 15th, 2007
Anna’s Granny and Papa from Kansas are visiting us! Anna’s 1st Birthday party is this weekend and they made the drive out to Colorado to help us celebrate. I can’t believe that the little Miss will be one year old! We’ve said it before, but Neal and I agree that it has been both the longest and shortest year ever. So much has happened since this time last year, yet it seems like only yesterday that she entered this world.
Next Wednesday Anna and I will be making a trip down to Children’s Hospital in Denver to see if she is a good candidate for a special type of therapy. We’re meeting with a rehab doctor and a hand specialist. The therapy regimen is called Constraint-Induced Therapy and involves the casting of her unaffected arm for a period of 2-3 weeks. While her right arm is casted, we’ll be doing intensive therapy with her left hand/arm. This type of therapy has shown great promise in children with some form of hemiparesis, and there are several studies that document this success in the literature. We’ve tried some home-grown constraint therapy using a couple of very thick socks or a ski mitten placed over her right hand/arm; it is amazing what she can and will do with her left hand if her right hand is out of the picture. We’re hoping that this therapy will help Anna realize that her left hand can do things, too!
If Anna is deemed to be a good candidate for this therapy, we’ll probably start on the 19th. This is potentially going to be a tough time for Anna (and for us, too). I’m hoping she tolerates the cast and is still able to do many of the things she does now. I’ll keep you posted on our progress!
March 6th, 2007
