enssle family

Summer ’09

No time for a big update, but I did just manage to post some photos on our Flickr site. Have a look!

October 24th, 2009

T minus 30 days

I’ve been remiss. Much has happened since my last post.

Anna’s Casting Part II: Our last post ended with Anna having her leg casted to help stretch her tight Achilles tendon. Almost 2 weeks post casting and we can say that it was a real success! When Anna had her first cast removed the following Monday, we already saw improvements in her flexibility. They measure flexibility in terms of degrees past neutral (think of neutral as your toes pointing up to the ceiling if you are sitting with your legs out in front of you) with both a straight leg and a bent knee. When we started Anna was minus 10 degrees with a straight leg and neutral with her knee bent. After the first cast she was almost neutral with a straight leg and 10 degrees past neutral (good!) with her knee bent. After the second cast, Anna was 10 degrees past neutral with a straight leg and 20 degrees past neutral with her knee bent. “Normal” flexibility is defined as 20 degrees past neutral, so we were very excited with the outcome. We’re getting a new brace within the next week or so that will hopefully help to maintain this new flexibility.

I re-read my post from the night before the initial casting; it turns out I was worried about nothing. The process was actually not bad at all (of course, I’m not the one who had a cast on her leg). Anna did everything she would normally do without a cast (some stuff she even did better with the cast than without) – climbing, running, jumping, etc. On the first couple of nights after she received a new cast she complained a little about leg pain. We were told by her PT that this was normal, and that we should give her Tylenol/Motrin to help the pain. After that she didn’t complain at all. Anna was completely freaked out by the cast saw the first time the cast was removed, but didn’t shed a tear during the removal of the second. I’d have to say the one drawback to the entire process was the inability to bathe. Three year olds are stinky beings, and I swear Anna played in the dirt more during those 2 weeks than normal. She left a definite ring around the tub when we were finally able to take a full-fledged bath after 2 weeks of sponge baths!

This past week Anna has been attending a “Helping Hands” camp at the Mapleton Center in Boulder. This is basically a constraint therapy camp where all the campers wear casts on their unaffected hands in an attempt to encourage increased use of the affected hands/arms. This is the first year that the Mapleton Center has offered this camp, and the turnout was a bit lower than they expected. I hope that they continue to offer it in the coming years because Anna is LOVING it! The low turnout has been great for us. There are 3 kids at the camp – 3 little girls ages 3-5 – and 4 adults (2 OTs and 2 volunteers) to manage them. We get the best of both worlds – the benefits of a group setting while still getting the one on one attention from the therapists! Anyway, they practice dressing in the mornings, do all sorts of crafts, spend time outdoors, bake, and play with one another. All the activities are designed to work on particular fine motor skills with the affected hand. She’s had such a great time, and I know she’s working hard by the simple fact that she falls asleep on the way home (it is a rare day when Anna falls asleep in the car). For Mom, it is nice to meet other parents whose children have hemiparesis. We’re planning on getting together after the last day of camp to compare notes!

Noah is now 6 months old! I cannot believe that so much time has passed. It seems like such a short time ago since he was born, but at the same time it seems like forever. The little man is really progressing! We believe it won’t be long before he’s mobile. He’s holding himself up with his arms and tucking his knees under him. We should probably get busy with the childproofing now! YIKES!

Noah had his 6-month check up last week. He weighs 17 lbs. 10 oz. (75th percentile) and is 27 1/2″ long (90th percentile). I was rather surprised that his weight earned him a ranking in only the 75th percentile. He’s a heavy guy!! He’s apparently fallen off his growth curve a little, but the doctor didn’t think it was anything to be concerned about. Anna did exactly the same thing at 6 months. Noah is teething like a madman; he chews on everything in sight and drools all over. For the last couple of weeks hee also seems to have had some sort of GI infection that, when mixed with the teething, has made us go through diapers, wipes and A&D ointment like they are going out of style.

Oh, I almost forgot! Noah has been sleeping in his own room since June 29th. Although we’ve had some ups and downs since he moved from our room, he’s been sleeping much better (and longer)! Last night he slept from 7pm to 6am, and then went back to sleep until 6:45 (when I had to wake him). Sleep does amazing things for his disposition too. He’s a much happier little guy when he gets enough rest! Naps remain a challenge for us, but he’s been doing much better at home in his own bed. If only we could get him to sleep at daycare.

T minus 30…our trip to Alabama is rapidly approaching! I’m a little more relaxed about the trip this time around, but I’m sure I’ll turn into a complete basket case soon. We find out about housing at the end of this month, which makes me a little nervous. I’d much rather know earlier that we have a confirmed place to stay. We’ve been prepping Anna for our trip to AL. We have the same therapist we had when we were there last year. Anna keeps telling us that she just really misses Reggie. I hope she still feels that way when we cast her for a month and make her do difficult things with her left hand. Anna was a very different little girl the last time we were there. She’s definitely come into her own over the past year, and I hope her independent streak doesn’t affect the therapy program (and ultimately, the outcome).

July 22nd, 2009

Home stretch

There’s been a lot going on since we last posted, and I’m happy to report most all of it’s good news!

March opened with a change in the lineup here on Team Anna. Tara’s mom flew out from Kansas on Saturday (3/2) so that she could pinch hit for me while I flew back to Colorado for a week of face time at work. Poor Debbie was sick as a dog when she arrived, but fortunately it turned out it wasn’t anything a whole bunch of medication (procured from a local urgent care) couldn’t fix in a couple of days.

Tara and her mom had a pretty good time of things during the week I was away. Anna made good progress in her therapy and in other ways as well. She’s suddenly able to count to 5 most of the time (sometimes higher?), and has a pretty decent grasp on her ABCs for somebody who’s not even two yet! She’s talking up a storm — still mostly two word sentences, but wow, the vocabulary is impressive. Meanwhile: Her therapists were very happy with her progress, and she’s now used to the (crazy busy) routine, which means she’s sleeping and eating well. She’s mostly healthy, too, which is new and different for everyone.

Lots of work and a bit of the stomach flu kept me pretty busy for the week I was away. It was good to see my folks and Max on Thursday evening, and I managed to make a bit of money at the poker game on Friday.  But I felt anxious the whole week and wanted to get back “home” to Birmingham.  (It’s very hard to be away from Anna and Tara for that long — I have no idea how parents who travel regularly do it).

Granny Debbie made a fantastic Dora the Explorer cake for Anna’s early birthday (pictures to follow?), which we all enjoyed on the evening I returned. Then Sunday morning (3/9) it was back to the airport to drop off Debbie, who’s apparently deep in the throes of Anna withdrawl as I write this. (Thanks so much for visiting and for all your help!)

So that brings us to this week, our last week of therapy. Anna got her cast off yesterday, which was pretty mind-blowing for everyone involved. Anna was frankly a little bit confused, and kept acting like she was expecting us to put the cast back on. It made us both happy to let her know that the cast is gone (at least for a while). And it was great to finally give the girl a real bath with plenty of bubbles, no rush, and no smelly cast to put back on afterwards!

We were thinking of taking her out to someplace fun like Chuck E. Cheese’s or McDonald’s to celebrate. But the combination of three weeks of not being able to use her right hand plus a bunch of new books and toys from her early birthday celebration this past weekend meant that Anna was really much more in favor of sitting at home and playing in relative peace and quiet. And who could blame her?

Everyone was expecting today to be a really tough therapy day. Anna’s historically really bad about using her left hand after she gets her cast taken off, and the therapists were ready for a major battle. But the girl continues to surprise, and she’s been unbelievably good about using both her hands or even just her left hand when we ask her to. (That’s the new therapy focus: bi-manual exercises). There’ve even been a couple of moments when she’ll use her left hand for a task without even thinking about it! In general, though, today was a great therapy day, and the therapists are really happy with what they’re seeing.

Friday’s our last day of therapy. We’ll have a few solid hours of therapy in the morning, and then we’ll relocate to the clinic at UAB for Anna’s “exit interview”. Saturday we’ll try to pack, clean up, and hopefully get outside to do something fun since the Ides of March is Anna’s official birthday. Sunday we’ll need to be out of our apartment by noon, and grab lunch somewhere on the way to the airport. Tara and Anna fly back to Denver in the afternoon, and after getting them on the plane I’ll start the long drive back home (ETA: Tuesday).

It’s hard to believe we’ve made it this far, and that we were able to survive three full weeks of 24/7 casting and intensive therapy. But we’d do it all again in a heartbeat. The gains have been impressive, and on the whole the last three weeks have been enormously positive for Anna on many different levels. She’s able to turn her hand over much further than she was able to before (even with Botox), she’s able to isolate her pointer and thumb, use a fork independently to stab food, and sit cross-legged. Her core strength and strength in her left hand and arm have improved dramatically. And almost as importantly, she’s really done a truly fantastic job listening and learning to follow directions — a very large challenge for someone so little — and with tolerating all the long hours of therapy.

We’re so very proud of our girl!

3 comments March 12th, 2008

Road to recovery and photos

I’m finally on the road to recovery after being sick since this last weekend. Thank God for Dayquil. Hopefully I’ll be completely well by the time my Mom arrives this weekend!

Anna is doing a great job with her therapy. Her therapists are constantly amazed at how hard the girl works. We do have our meltdowns from time to time, especially when they ask her to do something that is pushing her to the limit. For the most part, Anna does what her therapists ask her to do, but today she was either tired, frustrated or just demonstrating how terrible the twos can be. After days like today, I imagine the folks in the apartments around us wonder if we are skinning our child. Anna let out some of the most ear-piercing squeals/screams when she didn’t get her way today. It was truly a battle of the wills (and I’m not sure we (the adults) came out on top!).

Yesterday Anna had her first bath in a week. Yes, you read that correctly…ONE WEEK. For the first time in a week, Anna had her cast removed to check for any skin issues or irritations. She had a small blister between her middle fingers, but otherwise things looked fine. The smell…now that was a totally different story. Yuck. We gave her a bath and washed her stinky hair, and she enjoyed it so much that she didn’t want to get out. But all good things must end and the cast had to go back on. Surprisingly, putting the cast back on did not cause any problems. She actually cooperated completely.

I’ve been slowly posting more pictures. We hadn’t really posted any since before Christmas, so there is quite a backlog. Make sure to check previous pages on Flickr, as you’ll probably find newly posted pictures there as well.

3 comments February 27th, 2008

Twisters?

Cut to the chase: The tornadoes that threatened Birmingham missed us this morning. We’re all okay.

But we did spend some time hiding out in the bathtub very early this morning. I was very soundly asleep, oblivious to any danger when Kansas girl Tara woke me up at about 3:30AM, having somehow heard the sound of distant tornado sirens. We turned on the TV in time to see a major front bearing down on our location, with the backup weather folks from the local news stations in a panic about the whole affair.

So we quickly pulled on some clothes and decided that the bathroom off our bedroom was probably the safest location. I threw all the pillows in the house in the bathtub while Tara went and grabbed a very groggy and confused Ms. Anna. The two of them huddled in the tub for about 20 minutes (with me standing by ready to jump in if necessary) until about 4:10AM, at which point the front had passed over us with lots of wind and rain and thunder, but without manifesting any actual tornadoes.

We brought Anna into bed with us and I think she and Tara managed to get another couple hours of sleep before the therapists showed up at 6:45AM. (I can’t sleep if I’m up around that time, but it was nice to lay in bed and snuggle with the little girl).

I guess I didn’t think of Birmingham being prime tornado country, but this is the second scare now in as many weeks!

1 comment February 26th, 2008

Week one

Our first week of therapy is behind us.

Anna’s doing much better, health-wise. The steroids took effect almost instantaneously, and while she still has a runny nose and cough, at least she’s not croupy.

More importantly, by Wednesday she was pretty much sleeping through the night. She’s working so incredibly hard in her therapy that sleep itself has become something of a reward. After working her little tail off for six straight hours between 7:00AM and 1:00PM, she really looks forward to her afternoon nap(s). And for the past three nights she’s been reluctant to read books and has flat out refused to have us sing songs before we put her to bed. “Do you want to read another book?” “No.” “Do you want Mamma to sing songs?” “No. Seep”, she says. “Seep”.

Therapy has been going very well, and we’ve accomplished a great deal in just one week. But it has not been an easy road. The therapists work the girl very hard, and during the first couple of days she put up quite a fight. I think Wednesday was our lowest point. Tara had to leave the therapy session for about an hour because Anna was having a total meltdown and refused to comply with even the simplest request. Tara and I and her therapists all agree that it’s incredibly important for us all to help Anna realize that she’s not going to get out of therapy just by throwing a fit, but knowing that doesn’t really make it any easier on anyone when the poor girl is throwing a tantrum because she’s exhausted and sick and frustrated and all we want to do is stop the damn therapy session and give her hugs.

But the perseverance has started to pay off. By the end of the week there were far fewer tantrums, and today (Saturday) she had an amazingly positive therapy session, with not a single tantrum and some real milestones. She’s now able to bear significant weight on her left arm independently for several minutes, she’s really improved her supination (turning her left hand over with her palm up and open), she’s doing amazingly well with her pincer grasp (thumb and pointer finger) with tasks such as turning pages of a book or picking up small objects, and she was successful, for the first time today, in independently stabbing a piece of food with her fork and bring it to her mouth. Almost as important: She’s now starting to grasp the concept of delayed gratification — that when we say “do X now and you’ll get Y later”, she understands enough to work through the difficult task at hand for the promise of a reward later. This is a Very Big Deal for someone not even two years of age, and extremely important to making forward progress in therapy sessions.

It’s been a very long, very tough week, though. Poor Tara’s now managed to catch a cold (due to lack of sleep and way too much stress), and nobody’s happy when Momma’s sick, let me tell you. I’ve been trying to keep up at work, but it’s honestly been much more difficult than I’d expected to be super-productive and engaged when I’m 1,300 miles and a time zone away and always a little bit exhausted from stress and lack of sleep. And while it’s been great to touch base with some family and friends by phone or video chats, it usually just reminds us how lonesome it can be here away from our home. We miss our family, our friends, and our usual routine. And of course we really miss Max.

After six straight days of therapy we get tomorrow off. We’re going to try and get out of the apartment and roam around a bit, though it’s also possible we’ll just relax at home. We’ll start our second week on Monday, with our therapists arriving extra early (to make up for lost time at the doctor’s on Tuesday) at 6:45AM! (Our therapists, it should be said, “kick ass” — to use the technical term — and we’re extremely happy with all they’ve done and are doing).

2 comments February 23rd, 2008

Croup

It’s official, Anna has croup! After yet another fun-filled night of little to no sleep and a couple of 15-minute sessions locked in the bathroom with the hot shower running, we decided to take her in to see the doctor. We went to see our therapist’s pediatrician at their “sick-kids” clinic. It seems Birmingham is having a massive flu outbreak, so the clinic was packed. Neal and I made frequent use of the antibacterial/germ-killing gel! It took us literally 2 hours to see the doctor. We were totally unprepared for such a long wait. We were moved into a small exam room where we tried to entertain the 2 year old for more than 1 1/2 hours! She told us multiple times, “Coat…door…go.” As time dragged on, we were all ready for “Coat…door…go.” The doctor tested her for strep and flu (both negative, thankfully), and finally gave us some steroids for the croup. We notice a difference in her cough already! Here’s hoping we have a good night.

In light of our lack of a good night’s sleep and Anna’s illness, we opted to cancel our therapy for this afternoon. We got in 2 1/2 hours before we left for the doctor – that leaves 3 1/2 hours that we will need to make up. They are very serious about making sure that Anna receives her 6 hours of therapy per day! I suppose if they have a method that works, they should stick with it. I have to admit that it all seemed a bit rigid today. My parental instincts wanted to say…”hey, back off…can’t you see she doesn’t feel well?” Every few minutes were filled with crying, which led to a runny nose, which led to a cough, with led to the barking, etc. etc. Surprisingly, she did quite well this morning despite her lack of sleep and nasty cough. She’s such a tough little thing.

This evening we talked online with “Henny” (Anna’s cousin, Henry) and aunt Jo. It was great to see them both, and made us realize how much we do (will) miss them. Anna became really upset when it was time for us to say good-bye. She just kept saying “Henny, Henny, Henny…no, Henny.” It was just very difficult to end the call. Both the kids seemed confused that they just couldn’t get together to play. Distance is a hard concept for the kidlets.

1 comment February 19th, 2008

Day one

A long, challenging day today, but things have gone amazingly well so far.

We had Anna’s initial evaluation and casting at 8:30AM at the UAB ACQUIRE program this morning. Anna did us very, very proud. All the doctors and therapists there were extremely impressed with how well she’s doing. Anna “passed” almost every evaluation they threw at her. It doesn’t mean she doesn’t have a ton to learn, but it does mean that she’s made some very significant progress in the last year and a half since her initial diagnosis, and it reflects well upon all the therapy we’ve put her through so far. This is truly a tribute to Tara for putting in so many long hours in doctors’ offices, hospitals, and therapy with Anna, and to the dear little girl herself for learning to endure and prosper despite it all.

During the therapy Anna was fitted for her new full arm cast. Tara had tried to prepare me for this ordeal, warning that based on past experience with her two previous castings “she’s going to scream bloody murder for as long as it takes”. Well, the good folks at ACQUIRE added a single, simple variable to the equation of putting a hard cast on an almost-two-year-old that made all the difference in the world: A Sesame Street video. Lulled into near unconsciousness by the psychedelic antics of that little red monster Elmo and his muppet friends, Anna hardly put up a fight and the new cast was on her arm in almost no time.

We’re very impressed with Anna’s new therapists as well. They clearly know what the heck they’re doing. Obviously they’ve got the casting and occupational/physical therapy parts down pat. But equally impressive is their understanding of the developmental psychology of the kids. Frankly, knowing what exercises to get the girl to do is only half the battle. The other half is figuring out a way to get her to want to do the exercises in the first place. So almost all the “therapy” consists of games, games, and more games, guided by a firm hand. (That bit is important too. I’ve already been ejected from the therapy sessions three times because I’m clearly the “softy”, and Anna tries to use me as a “safety net” when she’s upset with what the therapists are trying to get her to do — which, despite being a “game”, is rarely anything easy). Perhaps the most important thing is that Anna seems to really get along with her therapists, and they’re growing fond of her too.

After the morning session where we had the initial evaluation and the casting we went home for a quick lunch and to put Anna down for a nap. (The poor kid is still fighting a cold, which means she’s twice as exhausted as she normally would be, and it was a brutal morning for her even without a cold). Then our therapists showed up at our apartment with a truckload (literally) of “toys” and other therapy gear. They spent the rest of the afternoon “playing” with Anna, and they’ll be here at 7:00AM tomorrow morning right after Anna wakes up to continue the program. The goal is at least 6 hours every day (excluding naps) of one-on-one (actually, two on one since we’ve got an intern working with our primary therapist) therapy, 5-6 days per week for the next four weeks.

Overall we’re extremely happy with how everything’s played out so far. The main thing is that our therapy team really seems to “get it”. It’s not uncommon for folks to look at how “well” Anna’s doing and ask why we’re pushing her so hard. Today was a bit of confirmation from folks who really study this stuff that all our pushing has been necessary, that all the hard work has helped make an enormous difference in Anna’s capabilities, and that yes indeed there is a bunch more hard work to come.

But for the moment, we’ll allow ourselves to indulge in a feeling of accomplishment. When we asked what we needed to work on this evening our therapists recommended we just take it easy tonight, “let Anna do whatever she wants, and have her favorite food for dinner.” So we took a short walk together, and tried to relax over some pizza and a glass of wine/apple juice. It was over a year ago since we signed up to come on this adventure. It’s been a long year, and a long trip, and it’s a little hard to believe we’ve made it here after all. We’re happy to know that we’ve been doing well by our little girl, and to be in the company of folks who are experts in helping take her therapy to the next level. We now know this is a marathon and not a sprint, and that progress is measured in feet rather than miles, but today at least it feels like we’re on the right path and headed in the right direction.

I’ll sign off tonight by remembering out loud that the real star of the show today, in every way, was dear little Anna. So strong, so smart, so charismatic, and so very patient. She truly made us proud to be her parents.

Sleep well, and dream sweet dreams, little one. Tomorrow is another day, and another set of challenges. But we’re here for you always. We love you.

1 comment February 18th, 2008

Got sleep?

Not us! Last night was a very long night for Anna and me. Anna seems to have picked up some bug (or already had a bug) that took advantage of the fact that she had no sleep yesterday. She had a fever last night of 102 degrees. That, coupled with the fact that she’s in strange place in a pack-n-play, didn’t make for a particularly good night last night. I ended up sleeping with her in her room. There’s a queen-sized bed in her room, but I certainly wouldn’t know, as I was clinging to the very edge while Anna took the rest. She just wanted to be close, and kept insisting on sleeping on me. I generally like to sleep in a cool room, with a cool pillow, etc. The heat generated from Anna’s hot little body was not really conducive to good sleep for Tara.

So far today, Anna’s been a bit of a mess. She’s obviously exhausted, but not really wanting to take a nap. We finally insisted on the nap, and she’s going on 3 hours! She even managed to sleep through a pretty loud thunderstorm (I felt like I was in Kansas again! You just don’t get storms like that in Colorado.). Hopefully she can sleep off the worst of this bug. If not, we’ve been googling the nearest urgent care.

When she finally wakes up, we’re off to Target to spend some big bucks. You really take for granted the fact that you have condiments, spices, and what-not in your pantry. We don’t even have any dishwashing detergent to wash up the pots we’ve used.

2 comments February 17th, 2008

Sweet home, Alabama

Thankfully, we all made it.

Despite some bad weather on Thursday morning (4 inches of snow in our driveway when I left), my three-day drive to Birmingham, Alabama went off without a hitch. Gloomy skies for most of the journey, but dry roads from Kansas to Alabama. Many thanks to Debbie and Rex in Towanda, Kansas for a fine steak and finer company on Thursday night, to the Days Inn in Fulton, Mississippi for being worse than I had hoped but better than I had feared, and to the makers of Red Bull for keeping me awake during the drive. I entered Birmingham around 9 o’clock this morning, and was unpacked in our new apartment before noon.

Tara and Anna made it to the Denver airport with time to spare, courtesy of my parents who got up much earlier than retired folk are wont to do in order to ferry their daughter-in-law and grandkidlet to DIA (thanks Mom and Dad!). Tara managed to get the folks at United to see reason and actually seat both mother and child next to one another (evidently the airline computers see no problem in seating a mother three rows away from her two-year-old daughter…), and the flight to Birmingham proved blessedly uneventful thanks in no small part to a portable DVD player and several “Dora the Explorer” videos.

Our apartment here is really quite nice, and we’re in a fantastic part of town (I felt quite under-dressed wearing only jeans and a t-shirt when I walked into the Panera at “The Summit” to use the restroom…). Most of all we’re happy to be together once again, and happy that this whole scheme worked out mostly according to plan.

We’ve got the day off tomorrow to sleep in, take a look around, and generally get our bearings. Anna’s ordeal starts Monday with her orientation, casting, and first round therapy at UAB.

February 16th, 2008