Wednesday, October 29, 2014

Ophthalmology check up


Allie had her annual ophthalmology check up yesterday and everything is looking really good.  (It's fun to see how much she's grown between checkups; here is the one from last year and the one from the year before.) They did an actual vision test for the first time where Allie had to identify different objects of various sizes.  Instead of the letters or weirdly oriented Es that I usually get, Allie got shapes like a birthday cake with candles, an airplane, a bird, and a house.  She scored perfectly and was deemed to have 20/20 vision.  They also did some depth perception tests where Allie had to wear glasses and grab the 3D objects that popped out.  She grabbed at them all with Righty, which made me particularly proud.  

She hated the dilating drops but recovered quickly and was happy to color in the waiting area until they kicked in (shown above). She got a little nervous once the drops started working and she suddenly couldn't see the picture she was coloring.  She said "my eyes feel just like your eyes".  Apparently she thinks my vision isn't so great. 

Her optical nerve still looks fair, which may imply some vision issues, but the doctor said that everything looks great.  If there is a visual field cut, she suspects it is "not large" but we won't be able to tell until Allie is older and can undergo more rigorous testing.  It was a good but exhausting appointment.


Things at school are going well for both kids.  Allie seems to be getting less shy with some of the new kids.  In a rare feat for us, we managed to finish her "All About Me" class book on time this year.  These are little books that the kids make about their life, family, interests, etc.  They keep them in the class to share with their friends.  We're normally embarrassingly slow getting our homemade book in but this year we actually made the deadline and it paid off.  Since many of her friends still don't have their books in --- we're not alone in our procrastination! --- Allie gets plenty of opportunities to share her book and bond with the kids over shared interests.   


For therapy, Allie has been trying a new hand splint to help keep her thumb out and more functional.  We've gotten two loaners from Allie's occupational therapist and, in spite of my resistance to bracing, it seems to help.  We went to McDonald's after OT one day and Allie made Righty in charge of drinking.  Her cup filled with water is heavy and I was impressed to see Righty pick it up and navigate it with ease.  I guess the little extra support helps.


However, she did complain that the splint makes her thumb "tired", so her OT lent us a slightly larger size to see if it is more comfortable for her.  She seems to like it.


Here's a shot of her at her physical therapy working on coordinating her arm and leg motion.


And, of course, Andrew is tagging along for all of these adventures.  He's really such a great baby.  For now, he's happy to hang out and watch all the cool things his big sister gets to play with.  I'm not sure how we're going to juggle things once he gets more mobile so we'll enjoy his compliance while it lasts.


Andrew had his first parent teacher conference, which Jonathan attended solo, and he got rave reviews from his teacher.  In spite of being the youngest kid in the class, he is the most chatty.  He can roll front to back and back to front now, so he's a little more able to explore.  And, he seems to really like interacting with the other kids.  The teacher's only complaint is that he won't nap more than a few minutes at a time.  I think he's just too excited. 

Monday, October 20, 2014

A weekend with Papa

Jonathan's dad, Papa, came out to visit this weekend. Here are some of the highlights.

On Friday, Papa and Andrew got some alone time while I caught up on some work and Allie was in school.


On Saturday, Tom and Jonathan did lots of outdoor work with the help of Allie.  She dug holes, diligently and gently planted a weed in the middle of our yard, and watched a huge scoop of dirt get dumped into our truck.

She took a yard work break for her first regular gymnastics class.  She did so well.


That night, we went out to Allie's favorite steak house where she had the biggest bowl of ice cream she's ever seen.  She ate it all.


On Sunday, we all tried to fly Allie's kite.  We weren't terribly successful but Allie loved it.


However, it was chilly and windy and Andrew has had better times.


Thanks for visiting, Papa!

Monday, October 13, 2014

Gymnastics and Botox Follow-up

After much debate and numerous drop in classes, Allie is signed up for gymnastics.

The kids were out of school today for Columbus Day so Jonathan took the day off to cart them around.  Because I like to give him a hard time, I scheduled a drop-in gymnastics class for Allie to try and her follow-up appointment for the Botox.  Love you honey!

The gymnastics class was great.  Allie enjoyed it.  It seemed sufficiently therapeutic.  They had an opening for their Saturday morning class... done.  Turns out that what made this class a sell was much less about Allie and much more about us:  we can drop Allie off and then leave, they have a Starbucks nextdoor with the fancy brewing machine that Jonathan likes, and they let us sign up by the month so there is no huge commitment in case it doesn't work out.  We're envisioning dropping Allie off then leisurely sitting around sipping coffee while she exercises.  That's my kind of class.


After the gymnastics class, the gang trekked down to the Children's Hospital for her check up.  I say trek because traveling to and from the hospital is outrageously stressful, filled with at least one near pedestrian or bus collision per trip.

Before I get to the description of how the appointment went, let me tell you how we think the Botox is going.  I think Allie's walking gait is pretty smooth; I don't think a stranger would notice a limp while she's walking down the street.  I also think her running gait has improved a little, but she still a little uneven.  But, hey, she can run pretty darn fast, which counts for a lot.  I was talking to Allie about her check up last night and that they were going to see how the medicine in her leg is working.  She collapsed to the ground, hugged her right leg, and said "Please don't take the medicine out!"  We talked a little bit about how her leg was feeling and her word of choice was "softer".  I'm sure there is some placebo effect going on there (after all, we did sell her on Botox as the magic medicine that is going to make her walk better and trip less) but I think this is a pretty good endorsement.

Now for the actual evaluation: things look fine and we should stretch more.  That's it.  Last time we had the Botox follow-up, the nurse was in the room for what seemed like 3 minutes and never actually touched Allie.  Jonathan clocked it this visit at 8.5 minutes, but she did check Allie's range of motion so at least there was a little more value added this time.  I guess it's better than a bad appointment...

Monday, October 6, 2014

"I like the medicine"

The Botox in Allie's leg is starting to kick in and the results are REALLY good.  She's walking more evenly, the range of motion in her ankle is comparable to her left leg, and---the best part---she's thrilled with it.

We keep asking her how her leg is feeling and her usual response is "good".  The other day she went into more detail, saying that the medicine in her leg makes her walk better and not trip as much.  And, she says that she likes how her leg feels.  Talk about affirmation that we did the right thing.

We tried to catch her description on camera and, although we're a little leading in our questions, here she is in her own words.  (Just ignore the fact that she thought I was looking at pictures on my phone and wanted to see too.)  

Wednesday, October 1, 2014

Botox complete

Curious George makes everything less scary

Allie got her second round of Botox yesterday and the procedure went very smoothly.  (Much better than the first time.)

We had to be at the Children's Hospital at 5:30am for her 7:30am procedure time.  Allie and Andrew were in shockingly good spirits.  We've been building the day up for weeks so Allie was excited for the present she'd get to open after she woke up from the anesthesia, the mac and cheese and ice cream with sprinkles she'd get to eat when we were home, and the TV she'd get to watch the rest of the day.

We escorted Allie into the procedure room where she was given the option of adding a strawberry bubble gum flavor to her gas.  The anesthesiologist let Allie smell the flavor syrup to see if she liked it.  Allie took a wiff, yelled "Ew!  Yuck!", and made the dozen doctors and nurses in the room laugh.  She was a little scared by the mask but was asleep in 10 seconds.  Then Jonathan and I had to leave.

Andrew wasn't allowed into the room so he hung out with one of Allie's nurses.  When we went to pick him up, the nurse had him smiling and laughing.  The Children's Hospital is great.

Ten minutes later, Allie was in recovery.  She was awake and telling jokes to the nurses by the time we got to her room.  She proudly showed me the still visible injection sites on her leg.  Water was sipped, her present was opened, and we got to leave.  We were back home by 10am for a healthy ice cream and mac and cheese breakfast.

She ended up getting 9 total injections spread between her right calf and shin (specifically in her medial and lateral gastrocnemius muscles and her tibialis anterior).  The Botox starts kicking in after a few days so we shall see how it works for her.