Posts filed under 'Family'
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
In the past week Anna has:
- had her eyes checked (everything looks good there)
- visited the new Children’s hospital
- met with the rehab doc who said she looked “just great”
- had her botox injections delayed until she’s seen next week by her OT down at Children’s
- had her hips x-rayed to determine if there is any problems with her hip development (everything looks good)
- tripped over a bronze bunny sculpture at Children’s and injured her left hand
- made a trip to urgent care on same day as trip to Children’s
- had hand/wrist/arm x-rayed 4 times to determine if anything was broken or torn (probably just a sprain)
- had her picture taken with Henry in their pumpkin costumes (not such a fun experience for anyone!)
- re-injured her hand
- played in the park a couple of times
- made another trip to urgent care to determine if she has another ear infection (unfortunately, she does)
- been re-weighed and measured: 27.2 lbs, and 35 inches long (big girl!)
- visited Oma, who returned home today after a 9-day stay in the hospital during which she had emergency abdominal surgery
That’s it, in a nutshell.
I’ve got new photos…I just need to post them. I can’t wait for Thanksgiving.
October 28th, 2007
Since my last entry I’ve posted at least a couple batches of photos. Make sure you check them out! They extend far beyond those found on the front page of this site.
Just a quick update…yes, we are all still alive and kicking! I know it has been a long time since I updated the blog; I guess we’ve been a little busy. Here’s a brief list of what’s been going on: Anna’s been walking around a lot lately - it’s become her primary mode of locomotion at this point; she’s had another ear infection; she’s been fitted for a new Dynamic Ankle Foot Orthotic (DAFO) for her left foot, so that she will hopefully walk correctly (heel-toe, not toe-heel); I was sick for a couple of weeks; Neal was sick for a couple of weeks; Granny and Papa came to visit; Anna played a lot with Henry; she’s been increasing her vocabulary substantially; Neal received a promotion; and we recently purchased a new car. Doesn’t sound like a lot when you write it down, but it seems like we’ve been very busy lately.
September, October and November are gearing up to be extremely hectic months. If she isn’t already, Anna will be fed up with doctors and clinics (I’m sure I will be too, and I’m not the one being poked, pulled and stretched). We have Anna’s 18 month check-up coming soon (she’ll be 18 months in a little more than a week!). And then we have all of her specialist appointments - neurologist, opthamalogist, neuropsychologist, and physiatrist (rehab doctor). We’re coming up on the one-year anniversary of Anna’s diagnosis. It’s hard to believe that it has been only a year. Sometime in October we’ll also be having Anna’s 6-month reevaluation for her IFSP (Individualized Family Service Plan). This is basically a powwow among Anna’s therapists, our early intervention service coordinator, and us where we discuss Anna’s progress and our goals for the next 6-month period.
In late October Anna will be receiving her Botox treatment. No, she doesn’t have wrinkles. Doctors often use Botox in children with cerebral palsy to relieve/reduce spasticity (high muscle tone) in select muscle groups. The physiatrist will be injecting Botox into several of Anna’s arm muscles. This will hopefully allow her to strengthen the opposing muscles that aren’t able to do much because of those muscles with high tone. Of course, this makes Neal and me more than a little nervous. I mean, the stuff is poison. And she’s still so little. They say that the injections are painful, which makes me feel terrible for putting her through this. I guess the one saving grace is that she probably won’t remember this (?). I certainly hope she doesn’t.
After the Botox treatment, Anna will begin her second round of constraint therapy at Children’s in Denver. As a reminder, this is a 3-week intensive therapy program where Anna’s good arm is casted in an attempt to make her use her affected arm. We see an occupational therapist down at Children’s 3 times per week, and we do a lot of work at home. She wears the cast from the moment she wakes up until she goes to sleep. Fun!
Anna has made a lot of progress since her last round of constraint therapy in March/April. Since we finished up the first round in April, we’ve continued to wear the cast all-day for 2 days per week and during each and every evening meal. It will be interesting to see what goals we establish for this phase. The treatment period will last right up to the Wednesday before Thanksgiving. I’ve been joking about the fact that this year we will have something for which to be truly thankful: a few cast-free days!
September 7th, 2007
I just learned that my uncle, Mike Steadman, passed away quietly last night just a few days short of his 65th birthday.
Mike was a great guy who managed to maintain his sense of hope and humor throughout many years of treatments for stroke and, finally, cancer. I’ll remember him, in particular, for the paintings he produced in his later years, and for the wonderful poem he composed and read at his grandson Ben’s funeral last spring.
Mostly I’m feeling terribly sad for his wife Margaret, my cousins Dean, Pete, and Pat Steadman, and for little Madie who’s lost both her brother and now her grandfather in such as short span of time. The Steadmans are some of the strongest, most loving, most positive, and best people I’ve had the good fortune to know. It just seems unfair that such good people have had to endure so much pain of late.
There will be a service for Mike this weekend. You can find more details on my cousin Dean’s blog.
To Margaret, Dean, Pete, Pat, Madie, Peggy, and all the rest of the extended Steadman family: We love you so very much. You are all in our thoughts and prayers.
June 27th, 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
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
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
Josie and Henry came over to visit Anna and me today. Jo and I decided that both kinds were kind of stinky, so we thought it would be fun to give them a bath together. They had a BLAST! There are a few pictures I uploaded of the event. We also were able to shoot a short movie (a little over 4MB).
We also uploaded earlier this week a couple of pictures of Anna in her new felt cowgirl hat. She received it along with a whole bunch of new outfits from her great uncle Mike and Julie. Thanks so much!!
February 8th, 2007
The title pretty much sums up the time since our last post.
We spent Christmas in Kansas this year. This was Anna’s first Christmas, which was actually a lot of fun. She had no idea what she was doing, but she enjoyed ripping paper off. Not so that she could see what was under the paper, but so that she could eat the paper. We had to keep a pretty close eye on her with all that paper laying around. We had a great time visiting with all the grandparents, aunts/uncles and cousins!
Due to the snow storm in Colorado and Kansas over the weekend of the New Years holiday, we stayed in Kansas a couple of days longer than anticipated. We had a room booked at the Burlington High School gymnasium, but thankfully we didn’t need to use it! We returned to Longmont on Monday night to find that our driveway was completely shoveled! Thank you Andy and Barbara (our next door neighbors). However, the plows finally came though on our street and deposited a large mound of icy snow in front of our driveway. After an 11 hour drive we had to dig ourselves out of the mound so that we could pull the car into the driveway. Not something you want to do at 11pm. Especially considering we all had to return to work the very next day!
Anna made it to daycare on Tuesday and Wednesday that week and by the weekend she was sick AGAIN! On Saturday she had a very high fever and on Sunday she had labored breathing. We interrupted our Christmas with Neal’s parents and cousin Sandra to take Anna to the urgent care clinic on the advice of our on-call doctor. The on-call doc said that we should begin to be concerned when her respirations per minute reached 40-50; Anna’s were 80 when we left the house and 96 when we reached urgent care! While there they had her do a breathing treatment, which is a lot of fun with an infant (NOT). They also tested her for RSV and influenza. Unfortunately she tested positive for RSV. If you haven’t had a child recently, you may not know that RSV is a potentially very dangerous respiratory virus for babies. It manifests itself as a cold for adults and older children, but it wreaks havoc on the ability of infants to get enough oxygen. It is also highly contagious, so no daycare for at least a week.
Anna was KO’d for that entire week. She didn’t begin to feel better until the following Friday. Even then she was still not her usual jovial self! The fever continued throughout the week. She developed two ear infections. And breathing remained an issue. Every night for a week we gave her a breathing treatment using a home nebulizer (again, a lot of fun). And then the cough started. It was just a terribly horrible week. Anna slept with me because the doctors wanted us to monitor her breathing; Neal slept on the couch. In sum, no one slept very well. On Monday we went back to the doctor to see if she would be cleared for daycare starting this last Tuesday. Unfortunately, she was still wheezing and rattling so we were told to wait for a couple of days. To top off that fabulous time, Anna gave me her virus. So now I’m coughing all night!
Last but not least, Anna is cutting more teeth! She now has 3 on the bottom, her two front teeth on top are coming in nicely, and she’s started to cut one of her first year molars. Needless to say, she is a drooling queen and has been quite fussy lately. It’s hard to tell whether she is fussy because of her sickness or because of the teeth. Maybe it’s a combination of both.
I posted some new pictures as well. I want to upload some new movies, but I need to use Neal’s desktop to do that. I’ll try to do that sometime this weekend. We have a couple of really good ones.
Oh, and on the therapy front, Anna is cruising around on the furniture now. We still aren’t hands-and-knees crawling, but we are continuing to work on that. I’m of the opinion now that she will walk before she crawls (on her hands and knees). She’s also doing a great job pulling to stand on her own. Now, if we could just get her to sit up from commando crawling, we’d be in business. Her OT today was absolutely amazed with Anna’s use of her left arm. She had expected a bit of a regression given the fact that Anna was out of commission for more than a week, but she was pleasantly suprised to find that Anna had actually gained skills. Baby girl truly is amazing. We’ve got some interesting therapy news on the horizon. I won’t elaborate now because it is still in the works, but I’ll be sure to share when we know more.
January 18th, 2007
I just found out I’m going to have to have laser eye surgery on Friday.
It’s a surprise to me as well. Honestly, I feel fine and don’t notice any problems at all with my vision (the voices in my head are another matter…). But I went to the eye doctor right before I left my old job just to use up the vision benefits before they went away, and the doctors found what they call “lattice degeneration”, some holes in my retina (eek!), and some significant “traction” (huh?), all of which lead up to imminent “retinal detachment”.
Here’s a Wikipedia article on the subject, for the curious.
So I’m in for some preventative lasering on Friday.
It’s a quick procedure, and I’ll get to be unconscious through most of it (Good news: I really enjoy being unconscious!). Recovery time is super fast (I could go to work the next day, which I won’t do because it’s Saturday), and the prognosis is generally good.
Funny thing: We’d never have known there were problems had I not quit my job a couple of weeks ago! So, um, thanks to Foraker Design?
December 14th, 2006
Five years ago today I married my best friend. On the best day of my life.
Thank you, my wife, my partner, my guide, my strength, my joy, my dearest love for making each day since then even better.
Let there be five and fifty and five hundred more years to come!
December 8th, 2006
Where did November go? We’ve had a lot going on lately - family visiting, changing jobs, therapy appointments. I often feel as if I’m running just to stand still.
Hope everyone had an enjoyable Thanksgiving holiday. We spent Thanksgiving in Fort Collins with Neal’s family this year. His brother and sister-in-law flew in from Southern California and his cousin from Germany, Sandra, joined us, too. She’s currently doing a study abroad program at a school in Aspen. This was Sandra’s first Thanksgiving celebration. The verdict? She likes pumpkin pie, but she likes pecan pie better. 
All of the relatives enjoyed spending time with Anna and it seemed Anna enjoyed spending time with them! I’ve uploaded some pictures of our festivities.
While Colin and Roby were here we had an early Christmas. Anna enjoyed opening everyone’s presents (actually, that’s a lie…she enjoyed eating the paper. The opening of the presents was simply a means to an end). Thank you Colin and Roby for the gifts! The reader you gave Neal has already been put to good use. Did you know that dolphins nap with one eye open?
Anna’s recovering from another one of her month-long colds. At the one month mark I took her to the doctor. From her symptoms the doctor thought she probably had a sinus infection. She’s in the middle of a 10-day course of antibiotics right now. God bless the person who created flavored medications. I can’t imagine these antibiotics taste very good on their own, but with flavoring Anna actually likes them. When I say she likes them, I mean she gets all excited when I bring out the medicine-filled dropper. I suppose it could be worse, she could hate them and kick, scream and spit when I gave them to her, but there’s just something wrong about a baby getting super-excited about taking medication. She does the same thing with the Tylenol. Yippeee…give me my drugs!
I forgot to mention that Anna has gone to her first swim lesson (loosely defined). We thought it would be a good idea to introduce her to the water earlier rather than later, and also thought that the water might have a therapeutic benefit. Anna’s therapists agreed. In water she gets instant feedback when she moves her arms or legs. She seemed to like it, but the water in the pool was very chilly. Thank goodness the lesson only lasted about 30 minutes; otherwise we might have had an Anna-cicle on our hands. We bought a little nyoprene swimsuit that should keep her trunk a bit warmer. We haven’t had a chance to try it out yet because Anna’s been sick. I hope that we’re all healthy this Saturday for her next lesson. We’ll see if the wetsuit makes a difference.
I’m going to post a movie soon of Anna babbling. The week before Thanksgiving Anna went from single syllable vocalizations to babbling like a brook. It is such a joy to listen to her “ba ba ba ba ga ba da da”. She’ll talk to anyone who will listen, and even those who don’t. It was the most bizarre thing, she literally started babbling overnight. On Wednesday she wasn’t saying much of anything, and on Thursday she wouldn’t stop talking. She’s also figured out how to make noises by moving her fingers over her lips. She’ll even mimic you if you do it first. She’s got “dada” down pat; we’re stil working on “mama”. And we *think* we may be seeing the beginnings of Anna’s first sign: food! It’s honestly hard to tell whether she’s just being orally fixated at the moment or actually trying to communicate.
This last Friday our daycare arranged for Santa to visit during the morning. Friday isn’t one of our normal daycare days, but I wanted Anna to have a picture with Santa. We dressed up in a new dress that Granny Debbie bought and stopped by the daycare center. It was so fun to watch all the kids of different ages sit on Santa’s lap. Several from Anna’s room were completely freaked out by the man in the red suit. When it was Anna’s turn the photographer told me to keep Anna facing away from Santa while I placed her on his lap. Tricks of the trade, I guess. Anna was fine with Santa. She stared at his beard (she has a thing for men with facial hair and hats) and seemed quite content. She wouldn’t smile despite my efforts at tickling her and generally making a fool of myself. All was well until…Santa spoke. She started crying and the photo-shoot was over.
In other news, Anna’s therapy is going well. Despite a two-week interruption of our routine, her therapists still see she’s making progress. This is a good thing because I was feeling tremendously guilty for not being as diligent as I could have been about making sure we did all our exercises. I guess this is something that I’m going to have to get used to. There will be weeks when Anna’s therapy schedule is thrown off by holidays, illness, whatever. Being a goal-oriented person, I am finding it difficult to remember that this is a long process, and that nothing is going to change overnight - no matter how many exercises I do with her. Anna has made such incredible progress in the short time since we’ve been working with her. Neal reminds me constantly to think about where we were just a few months ago. He also acknowledges how hard this is for everyone. We’re having to teach Anna many of the skills her peers just learn on their own. That said though, Anna is very bright and picks up on things rather quickly. This evening she amazed us both by following the steps she learned on Thursday to pull herself up to standing (with help, of course). Those are the moments when I am so incredibly proud of her.
Anna is still commando-crawling, and getting pretty good at it, I might add. She seems to resist going up onto all fours. Her arm is getting stronger and stronger, though. She’s also using her arm/hand much more these days. She’s bringing it to midline to play with toys (as a helper hand). Anna’s occupational therapist has recommended that we get a Joe Cool strap for her thumb. This strap should help pull her thumb out so that it isn’t tucked in as much. Kathy thinks that this might encourage her to play even more with her left hand. As I mentioned previously, Anna is working on the steps to pull herself to standing. She has been attempting the brute force method for the past week or so - trying to pull up using just her arm strength. Her physical therapist thought it would be best to teach her the proper steps before she develops some bad habits. Pulling up is a big challenge because she isn’t really transitioning well from being on her tummy to sitting. It would all be a lot easier on Anna if she were able to get up on all fours, but we’re working on it nonetheless. We’re also working on helping Anna recognize that her left hand can do things independently of her right (i.e. that she can have objects in both hands and can chew on either one of them). This one is going to take a lot of patience on both our parts.
December 3rd, 2006
It is absolutely amazing how quickly time flies these days. We’ve been quite busy, as usual. Granny Debbie returned home to Kansas yesterday after a week-long visit. We miss her already! I hope she had a nice time visiting her grandbabies, because I know we certainly enjoyed her visit. Neal and I went out on our very first date since Anna was born. Granny Debbie watched Anna while we went out to eat. Of course, we spent about 50% of our time away talking about Anna and wondering if she was giving my Mom a hard time! It was really nice to have some time to ourselves, though.
On Sunday we celebrated Henry’s 1st birthday! Speaking of time flying, I can’t believe that it was one year ago that we rushed to the hospital to be with my Sister at Henry’s birth. It literally seems like yesterday. Henry seemed to enjoy himself at his party. He was a little confused when everyone sang to him, but enjoyed the attention as he made a total mess of himself and his cake. Happy Birthday H-man!
Last week we heard from the doctor’s at Children’s Hospital regarding Anna’s blood work. Anna does not have a clotting or bleeding disorder that caused her stroke. From what it sounds like, this was an isolated incident. This is all very good news because it means she is not necessarily at increased risk for additional strokes.
I realized I haven’t given any reports on Anna’s occupational therapy appointments. So far we’ve had two session and we’ll have another one this afternoon. Thursday is shaping up to be a busy day for us. Anna has physical therapy every other week and occupational therapy every week on Thursdays: one in the morning, one in the afternoon. Our first OT appointment didn’t go so well, as Anna was cranky and very skeptical of Kathy. Last week’s session went much much better. I made sure she’d had a nap and a snack before the session started.
Kathy was quite impressed with Anna’s progress. Anna has been relaxing her hand more these days, which is a great thing. If she’s having a good Bob-day, she fists her hand only slightly and most of the time it is open. Of course, there are those days when it seems like her hand is clenched very tightly and no amount of stretching will make it relax. I’ve tried to correlate it to something - lack of sleep, hunger, stress, not enough stretching - but I haven’t nailed down a definite cause yet. I doubt it is any one thing that causes her to tense up. Overall, Kathy told us to continue doing what we are doing: a little constraint therapy, sensory work on her left side, stretches, etc. We’ve been trying to strengthen Anna’s left arm by doing lots of weight bearing exercises: baby push-ups, leaning and propping. I can really see a difference in how long she can hold herself up using her left arm.
I believe Anna tries very hard to please us and works exceptionally hard at the tasks we give her. I don’t mean to be sappy, but it often brings tears to my eyes when I see how hard she is working to do something. I remind myself constantly that what she is going is very hard work. I know that I couldn’t do many of the things that I’m asking her to do! And yet, she furrows her brow, grunts a little, and pushes herself a farther. What a trooper.
November 16th, 2006
It’s been quite awhile since we’ve posted anything. It would be an understatement to say that we’ve been a bit busy lately. With doctor and therapy appointments, a trip to Kansas, and family visiting, there hasn’t been much time to sit down and upload pictures or write a blog entry. I’ll try to remedy that here!
I’ve uploaded a ton of pictures to our site. Be sure to check out more than the six pictures you see in the sidebar. I guess you could say that what I uploaded today pretty much covers the month of October!
During the first part of October we traveled back to Kansas for my cousin Aaron’s wedding. Anna and I (and Max, of course) took the opportunity to spend some time with the grandparents during the week prior to the wedding. We had a great time with Granny Debbie and Papa Rex, and I think Great Grandpa Jack enjoyed seeing Miss Anna, too. Neal did his usual traveling madness: he drove out with us on a Saturday, flew back to Denver on a Sunday, flew back to Kansas on a Thursday, and drove home with us on a Sunday. He certainly put in some mileage there. Anna, Max and I were extremely happy that he decided to join us on the long drives across the high plains.
Aaron and Shayla’s wedding was very nice…short and to the point (just like they wanted it)! It was great to see all the family who drove in for the event. That’s what I love about weddings - you have the chance to see family that you hardly ever see! We also were able to spend some quality time with Great Grandma Winnie. Everyone had a great time at the reception. One highlight was the pastor teaching everyone how to do the electric slide! Henry fell in love with the DJ’s lights and was determined to touch them despite Jo’s best efforts to dissuade him. And the BBQ was excellent.
When we returned from Kansas, Anna had her first physical therapy appointment with Kathryn from Tiny Tim. She did an initial evaluation of Anna while I filled out paperwork. She seemed to think that Anna’s biggest challenge will be keeping her left hand open. I thought that was good news! We were given a list of stretches, exercises and activities to do over the next couple of weeks until we see her again. I had a good vibe from Kathryn and I think that Anna likes her, too. We also were able to finalize our occupational therapy assignment. We’ll be starting her OT with Kathy this Thursday.
Granddad Sam and Grandma Mary came to visit us the weekend after we returned from Kansas. We didn’t do anything special - like go to the mountains or zoo. Instead, we all hung out at home and played with the babies. Granddad Sam read many a book to Henry and Anna…over and over and over and over again. And I think Mary had a fun time just playing with the babies. We certainly enjoyed having them here! I hope they don’t wait another year before they come out again!
Last week Anna had 3 different doctor’s appointments. On Monday she saw the pediatric ophthamologist, on Wednesday she saw her neurologist, and on Friday we went to the Stroke Clinic at Children’s Hospital. Here’s what we now know: Anna’s vision is probably going to be fine. There may be some issues that develop as she gets older, but at this point the doctor doesn’t see anything to make him believe that she’ll have any problems.
We were able to see the MRI images at our appointment on Wednesday. The stoke is located in the area of the brain in charge of controling movement - specifically, movement of the muscles of the arm/hand and leg on the left side. The neurologist explained that this is the same area that is affected when someone has tremors due to Parkinson’s. On the computer screen the stroke area was about the size of a quarter, which seemed huge to me until the doctor told us that most strokes she sees cover a much much larger area of the brain. The image on the screen was much larger than Anna’s head, so Neal and I imagine that the actual area is more like the size of a dime.
And on Friday we spent the entire day at Children’s Hospital. During the morning Anna had a neuro-psych exam. They wanted to determine whether or not the stroke has caused any problems with her cognition. There isn’t a whole lot they can do with a 7-month old as far as testing goes, but what they were able to do indicated that Anna doesn’t show any signs of cognitive difficulties. She had problems with those parts of the test that involve bi-manual tasks, but we knew that would be the case! Otherwise she did quite well and scored above the mean.
Later that day we met with a host of doctors from various departments at Children’s: rehabilitation, hematology, and neurology. Several teams of doctors came to examine Anna. They poked, prodded, pulled, stretched, shined light, poked again, tapped on reflex points, stretched again. Poor Anna. Through it all she maintained a sunny disposition despite having snot running out of her nose (she has another cold), drool stringing from her mouth, pain radiating from her gums (teething), and a nasty nasty cough. What a trooper. I know the experience was not a pleasant one for Anna, but it was very positive for us. We learned a lot about Anna’s stroke and her prognosis. We still don’t know exactly when the stroke happened, or what caused it, but we do know that it probably happened in utero toward the end of the second and beginning of the third trimester, and that it probably isn’t due to a blood clotting disorder. They are doing blood work to make sure that is the case. The rehab doctor was extremely encouraged by all that Anna is doing so far. She thinks that there will be very few remnants of the paresis when Anna gets older, and the neurologist said that depending on how Anna responds to therapy, this may all be “our little secret.”
So there you have it…the most up-to-date information. I’ll try to be better about posting pictures and info in the coming months. For now…enjoy!
October 31st, 2006
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