Monday, September 29, 2014

Back at Work

Getting ready for swim class

My maternity leave ended last week and we're all adjusting to the new schedule.  I'm now in the office Mondays, Wednesdays, and Fridays, at home with Allie and Andrew on Tuesdays, and home with Andrew on Thursdays.  Since I'm working full time, I'm trying to squeeze as much office time in on my three days so Jonathan has been doing all the drop offs and pick ups from school.

So far things are going well.  Andrew likes his class and teachers.  He started laughing and it is the cutest thing.  The funniest part is that I haven't figured out what he loves and what terrifies him.  Some days he finds a noise hilarious; other days it makes him scream and cry.  He cracks me up.

Allie has grown considerably in her new class.  She has more complex discussions with us, has new interests, and is making huge fine motor improvements.  However, we're starting to see some shyness come out.  Her teachers think that it could be because some of the kids are new and a little older.  We're setting up play dates with some of the new kids so she can get to know them better.  Hopefully that will help.

One of her new friends had a costume-themed birthday party yesterday and I was so proud of how outgoing she was.  She stood up in front of the big crowd, introduced herself, and said what she was dressed up as.  The party was at a local kids' gym and the event ended with all the kids taking a ride on the zipline.  I had given the instructors my standard intro about her right sided weakness and the main guy said he'd make sure she got a little extra help with the zipline part.  Allie bravely got up for her turn and the main guy lifted her up to grab on.  But, he kind of rushed her and she didn't have enough time to get Righty all the way on.  He then sent her on her way and the shorter guy couldn't support her and she slipped off.  

She didn't hit the ground or anything but she was pretty emotionally hurt by the experience.  She watched all the other kids go and looked overall bummed.  When we got in the car she asked "Why did that happen?  Why did just Lefty hold on and I fell off?"  I fumbled it and said "I don't know but I am really proud of you for trying."

Later that night I tried to recover and talk about it more.  I asked if she every noticed that her friend's can use their right hands as well as their left hands.  She said yes and that one of her friends in particular has "two leftys".  I told her that her right hand isn't as strong as her left hand yet and that's why we have her OTs and PTs, who are there to help her get super strong.  She did her body builder flex to show me how strong she is and then she changed the subject.  I tried to circle back a couple times but she wasn't having it.  

I think she's starting to notice that there is a difference but she doesn't seem ready to talk about it.  The other day she came home with a drawing of a snowman she made in school and the snowman only had one arm.  When I asked about his arm, she quickly changed her description of the drawing and said it was actually a tower.  A lumpy tower made up of stacked circles with a stick sticking out of it surrounded by snowflakes.  I'm a little skeptical...

Hopefully her new awareness will motivate her to try new things.  Her long-time private OT has been telling me for years that she's seen the best therapeutic gains happen between 3.5-6 years old, when the kid is old enough to see the difference and want to keep up with her friends but not too old to be embarrassed by it.  But while she's still open to it, we're going to talk about Righty as much as possible.  We don't want her to be embarrassed or feel like it is something she has to hide.  It's her Righty, she's our Allie, and we love her exactly like she is. 

Allie will be getting her second round of Botox tomorrow morning and has to be sedated for it.  The injections will be in her leg and it will hopefully help even out her gait a little, especially when she runs.  We've been talking about the hospital and what she can expect for a couple weeks now.  I think she's actually excited about it because she gets to bring her stuffed bunny Baby to the hospital, and when we get home we're going to sit around, watch TV, and eat mac and cheese and chocolate ice cream with sprinkles.  Fingers crossed it all goes well.  

Thursday, September 11, 2014

Botox, round 2

I mentioned a couple posts ago that Allie's physiatrist recommended that she get Botox again in her leg.  She suggested that we think about it and would put us in the scheduling queue in case we decided in favor of it.  We have been thinking about it but we never really discussed it in detail. I had pushed the decision off and had pretty much forgotten about it.  Imagine my surprise when the Children's Hospital scheduling person called, offered us a spot, and said that he needed an answer immediately or he was going to offer the spot to someone else.  

Luckily Jonathan and I were in the car together on the way home from a meeting with Allie's teachers (more on that to follow).  I said I would call him right back.  After all of a 30 second discussion, I called and scheduled Allie for sedated Botox on September 30th.

We're cautiously optimistic that this will help even out her gait a little.  We shall see. 

Now, back to the meeting with Allie's teachers.  We try to meet with Allie's new teachers at the beginning of the school year to give them an overview of her medical history, what it means for her life in the school, and make it clear that they can ask for our help whenever they need it.  We went through the whole story of the stroke, the cerebral palsy, and the therapy. They looked a little terrified.  I looked over at Jonathan and he had this waiting look like I was forgetting a big part of the story.  I paused... then remembered: epilepsy!  I had somehow completely neglected perhaps the most traumatic part of Allie's medical history.  Even when talking about it now it seems like that happened to someone else.

Allie has emergency seizure medication at school in case she has a prolonged seizure there, so this was an especially important part of the story for her teachers to know.  Knock on wood, she's never had a prolonged seizure and has been seizure free for 2.5 years now.  She still takes daily medication and will for a while.  It's funny (and kind of nice) that I've seemingly omitted the whole thing from memory.

In other news, Allie got a new bike from her Gama and Papa.  She loves it, although she may need a lesson in stopping...

We all went on a longish ride yesterday and we could tell how much it wore her out.  It seems like the perfect balance of difficult but rewarding.  I'm a fan.  

Little Andrew is still being a wonderful baby.  He's just over two months old now, happy as can be, a good eater, and a good sleeper.  There may be a little tension between Allie and him but---with the exception of when I set him on her bed and she screamed "Get IT off my bed!"---she's handling it pretty well.

Monday, September 1, 2014

Andrew's 2 Month Check Up

Happy Birthday Uncle Blake!

Andrew had his two month check up on Friday and he did great.  He now weighs 11 lbs 10 oz and is 22.5 inches long.  That's almost 3.5 lbs and 2.5 inches of growth.  He's growing up so fast... sniff sniff.

Allie was very interested to hear that he had a "check up" and she decided to do her own exam.  She then ran around pressing her stethoscope to everything declaring "I'm going to check up the couch!" or water bottle or my shoe while I was walking.  She's my little doctor in training.

Jonathan's parents Tom and Bonnie came into town today and we sure are glad to see them.  We even all got on the ground to take a family selfie in honor Allie and Andrew's beloved Uncle Blake (shown above).  I'm sure that our getting up from that position was a sight to be seen.

Here are some pictures of Andrew enjoying his grandparent time.