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.
02/17/08 12:29 PM at 12:29pm
Tara
Alabama Babies Family Health Parenting
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.
02/16/08 7:42 PM at 07:42pm
Neal
Adventures Alabama Family Travel
Tara and I were devastated to hear that Keith Foskin, a great artist, scholar, philosopher, and friend of the family, passed away two days ago.
We always looked forward to spending time with Keith and his brother Kevin during holidays and family gatherings. His love and appreciation for music was impressive in its diversity and scope, and his humor was sharp, sensitive, and quick. We always felt that Keith truly embodied what it meant to be an artist — he was overtly and openly passionate about his art, his ideas, and his politics, with his heart on his sleeve and always trying his very best to live his convictions.
What impressed us perhaps most of all was his fierce devotion to his friends, and in this terrible moment we wish we could speak with him just once more to thank him for his friendship and the good times he shared with our family, and my father in particular.
Keith, Kevin, and their friends and family are in our thoughts and prayers.
02/4/08 8:00 PM at 08:00pm
Neal
Friends
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?
01/20/08 5:55 AM at 05:55am
Neal
Family Health Holidays
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.
10/30/07 10:37 PM at 10:37pm
Tara
Babies Health Holidays Parenting Photos
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.
10/28/07 8:20 PM at 08:20pm
Tara
Family Health Milestones
Anna had her 18-month check-up last week on Friday. She now weighs 26.2 lbs (this after a day of throwing up! Thursday was not fun) and is about 33 or so inches tall. Everything seems to be on track!
I’ve been busy making Halloween costumes for Henry and Anna. We’re planning on taking them for pictures with their costumes – hopefully they will cooperate and wear them during the photo shoot.
We had dinner last night with Taara, Erik and Ian! We hadn’t seen them in about 6 months, and were amazed at how much the babies had grown. We had a great time and hope we can get together again soon.
Anna’s new orthotic is causing some bruising on her leg – so we have an appointment with the orthotist so he can modify the brace.
That’s all for now. It’s raining here…has been all day long. Very dreary and cold. Makes me want to stay in bed with the covers pulled up to my chin.
09/24/07 1:51 PM at 01:51pm
Tara
Babies Friends Milestones Uncategorized
We’re taking bets on how long it will take the monkey in our family to figure out that she can push the chair to the kitchen counter, climb onto said chair, and access all the forbidden wonders located on the counter top. This evening we walked into the kitchen to find Anna standing on one of the kitchen chairs. When she learned this new skill, I haven’t the slightest idea. She certainly was pleased with herself! So…who’s going to make the first bet?
In other news…we went to the circus today. The Greatest Show on Earth is certainly lacking. Perhaps it is just because I’m older and jaded, but it seemed smaller and amateurish (Neal agreed). I mean, they had two clowns…yes, that’s T-W-O clowns; and some troupe from Bulgaria jumping through hoops and such. No tigers (thanks Roy), only one elephant, one horse, and some dogs catching frisbees. We arrived a bit late to the arena and tried to find our seats in near complete darkness. In the meantime, Anna was totally freaking out. The darkness, the spotlights, the people…all of it caused her to cry and scream at the top of her lungs. We honestly thought that we were going to be forced to bag the entire thing. After a bit, the house lights came up and we were able to calm her down. By the end of the performance, Anna was crying because we had to leave.
On Friday Anna received her new orthotic. I hate it. She doesn’t seem to mind it though, and I guess that’s all that matters. It extends up her leg to about the largest part of her calf. It has two hinges that allow her to bend her knee and ankle, but prevent her from pointing her toe. She’s definitely heel-toeing, but she sort of looks like a pirate with a peg leg. She swings her left leg out and around. I’m hoping her PT can tell me whether this will change once she becomes used to the weight and the way it works. We’re certainly going to need to go shoe shopping again. So far we have one pair of shoes that fit over this new brace. I’ve heard that Nordstrom’s allows you to split shoe sizes for situations like this. I think she’ll need a size larger for her left foot (and perhaps larger width, too). The shoes at Nordstrom’s may cost you more, but it is probably still less than what you would have to pay if you were forced to buy two pairs each time.
Yesterday Neal sent me to a day spa for my birthday present. What a great gift! I had a massage and facial, and I got my hair cut! I realized that this may be the first (no, maybe second) haircut I’ve had since Anna was born. Anyway, the stylist asked me if I wanted to keep it long and if I pulled my hair back. I answered not necessarily to both questions, and she took it from there. I must say I was pretty freaked out (still am a little) by my new “do”. It’s much shorter than I’m used to, and it’s layered. I don’t think I’ve ever had layered hair – feathered, yes; layered, no (oh come on…I lived through the 80s). Needless to say, I think I’m going to need a little time to adjust to this new haircut. It’s supposed to be “wash and go” because I told her I don’t have the time or patience to deal with fixing my hair. This morning I had to do a lot more than wash and go. Why does your hair NEVER look the same on the second day? Arg.
Max has a new friend (or nemesis, we’re not sure which) that comes to visit him almost everyday. This very curious, orange tabby cat has been making the rounds nightly. This rocks Max’s world. They loudly mew back and forth to each other for what seems like hours (this usually happens after everyone has gone to bed). I’ve resorted to spraying the orange tabby with water (through the window screen) to make him leave so that the house is quiet again. Max then runs from window to window looking for his contact with the outside world. Poor guy.
09/16/07 7:52 PM at 07:52pm
Tara
Adventures Babies Birthdays Entertainment Milestones Pets
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!
09/7/07 8:42 PM at 08:42pm
Tara
Babies Family Health Parenting Photos
I just posted a ton of pictures from the last month. We’ve been very busy lately with out-of-town guests and family. At the end of June we had my Mom and Rex visiting from Kansas, and at the same time, one of my roommates from college, Deirdre, was visiting Colorado for the first time! Before that we had Neal’s Mom spending the weekend with us. Most recently we had Neal’s Brother and Sister-in-law visiting (they hadn’t seen Anna since Thanksgiving!). We had a great time with everyone!!
Anna has changed so much since my last post! She’s really getting the hang of this walking thing. She can now stand-up in the middle of the floor without hanging on to anything. Her therapists are amazed at how quickly she’s progressed. It is still a complete trip to see her walking around. She has finally advanced to the next room at her daycare. Almost all of the kids in her new room are walking, which provides some very positive peer pressure for Anna. So far she seems to have adjusted well. She still gets pretty frustrated and often bites herself (yikes!) to vent some of that frustration. I’m not sure how much of that is her frustration with her left hand, her still-unsteady-walking, teething, or her language.
In the language department, Anna has made some very significant progress. She is constantly mimicing our sounds and tries to repeat words back to us. They may not sound like the same word, but she is practicing – so we are very happy. Her new favorite word is “Go!” She loves to ride in the wagon and will tell Dad to “Go!” when she wants to go fast.
Two of Anna’s canines have finally broken through. She was an extremely grumpy bug while cutting those. I think she’s working on her final two (until second-year molars) because she’s starting to bite everything in sight – herself, toys, furniture, carpet, me. On Monday Anna was just a mess. She cried at the drop of a hat and couldn’t stop. When she finally calmed down, she was a slobbery, snotty, tear-soaked mess. She was just wet all over. Ick. I will be so incredibly happy when she finally cuts these final teeth. I’m sure she will also be relieved.
07/11/07 9:40 PM at 09:40pm
Tara
Uncategorized
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