Monday, October 28, 2013

Apple Picking

We went apple picking and we all had so much fun.  This is the same orchard we went to last year and it's fun to look at the pictures and see how much she has grown.  Last year, Allie couldn't even stand by herself and this time she trekked at least a mile and a half.  It has been a good year.

Allie liked to narrate the process: "Two hands... pull apple... in cart!  More!"

And of course we had to sample the apples...

Allie walked for an hour before she would agree to take a ride in the cart.

Turns out the cart was pretty fun.

Then Allie went on a pumpkin hunt...

... and admired the animals.

We walked by the already picked pumpkins on our way out and Allie thought it looked like a great place to rest.

After inspecting dozens of pumpkins, she finally found the one.  Dada was very relieved to have a decision made.  While we were walking to the car, Allie pointed out that we almost left without sticking our heads in this wonderful prop.  That wouldn't do.

Monday, October 21, 2013

Botox Update

School pictures (pre-Botox)

We are now two weeks post Botox and it is both good and bad.  The good is that Allie is really loose.  Her thumb is no longer tucked in, she can supinate her wrist, and her shoulder is in a very natural position.  Just looking at her, she looks fantastic.

The bad is that Allie was using her increased tone in place of strength and, now that the tone is gone, so is her ability to do a lot of the things she was doing before.  Going up and down stairs is really hard, as is picking up or holding things with Righty.

We were warned that Allie would seem really weak post-Botox, but we're optimistic that she'll gain enough strength independent of her tone that she'll bounce back.

We've been told to encourage crawling so we've started "M&M races" where Allie gets an M&M if she crawls through a popup tunnel tube in under 10 seconds.  Allie will do most anything for an M&M so it's working reasonably well so far and her crawling is looking good.

We are also doing lots of stretches, which Allie suddenly loves because she isn't so tight.  She was cuddling on my lap and cracking up tonight as Jonathan stretched all of her limbs.  I don't think she's ever cracked up during stretches before.

Wednesday, October 9, 2013

Water girl

This is a video of Allie yesterday, post botox.  I was trying to get her to drink some water so I gave her a cup and taught her how to fill it up herself.  Her shuffle to dump it out isn't from the botox; it's because the floor is soaked and she's trying not to slip.  This went on for about 20 minutes.

Allie is doing well today.  She has a little bit of tenderness around her injection sites but nothing that some children's ibuprofen won't take care of.

Tuesday, October 8, 2013

Botox Day

Today was Allie's botox injections and things went pretty well.  She was a great sport getting to the hospital, barely complained about not getting anything to eat or drink, and was an overall pleasant girl.  She even made a friend in the waiting room.

Once we got back into the OR prep area, Allie put on her gown and high traction socks and rocked the look.  We went for a brief tour to look at some paintings that the nurses had made about why they became nurses (pictured above).  My favorite was "I became a nurse because I didn't want to be a teacher... I needed a CHALLENGE!"  What?!?!  Who paints that on a little canvas and hangs it up at their work.  Weird.

After some more gown modeling, Allie's doctor came in to say hi and mark up the injection sites.  Jonathan and I had envisioned this to be a specific part of the process where the the doctor would pinpoint which muscles needed to be targeted.  To our surprise, the doctor got down on Allie's level and asked if she would like a flower or a heart.  Allie chose the flower and the doctor drew a big flower with her initials all over Righty.  Then Allie got a heart too on her right leg.  Apparently the doctor just wanted to make sure that she got the correct limbs.

After a 14 minute operation, and a 10 minute wake up, she was done and we were allowed back to see her.  She was not a happy camper when she woke up.  She started crying because she was groggy and wanted all of the stuff off of her.  She wasn't allowed to leave until she drank something but she refused.  Much crying ensued and the nurses brought in a bunch of bright and loud but soothing things to distract her, none of which worked.  

Eventually the anesthesiologist came in and said that Allie should just leave because being in the hospital was more upsetting than helpful.  As soon as we were out of sight of the doctors, Allie was fine.

We went home and spent the rest of the day lounging around, eating saltine crackers, and watching episodes of Thomas the Train.  It was a surprisingly sweet day.  She was cuddly, which she never is, and we got to just hang out with each other.

After a brief afternoon nap, she started asking me to sit next to her and saying "My... hand... hurts..."  Some Advil seemed to do the trick, but we shall see how she holds up tomorrow.  

All in all, it was a stressful day with a few bright spots, but I am mostly glad that it is over.

Monday, October 7, 2013

Botox Countdown

Allie has an early morning appointment tomorrow for her botox injections.

We have to be at Children's at 7am tomorrow morning and Allie can't eat or drink anything until her operation at 9am.  In preparation for her hunger-filled morning, we tried to stuff her with as much food as possible tonight.  She and Jonathan made chocolate chip cookies for dessert and Allie could not have been happier about it.  We all sat on the ground and watched them cook in the oven.  Once they were cool enough, we sat around her cupcake plate filled with cookies and took turns dunking our cookies in her cup of milk.  A quick bedtime story and a full cup of water and she was off to bed.

I am nervous about the anesthesia but I'm excited too see how the botox works for her.  While she was washing her hands tonight and the water was running over her fisted Righty, she looked at me and said "hand closed".  Maybe this will help.

Tuesday, October 1, 2013

Allie's KKI Story

The folks at the Kennedy Krieger Institute sent me Allie's story that will appear in full on their website and in part in their annual calendar.  They haven't finished the images yet but I like the story so much that I wanted to post it right away.

When Blowing Kisses is a Monumental Feat

An in utero stroke left Allie without the use of her right arm, but early, targeted therapy is helping her get it back.

Seeing 2-year-old Allie’s arm wrapped in a cast during therapy, you might assume she has a broken arm. But it’s actually her other arm that poses a challenge.

Allie suffered a stroke in utero that left her with limited movement in her right arm, and she now undergoes therapy that constrains her unaffected arm to encourage the use of the weakened one. It’s called constraint-induced movement therapy.

Not only does this therapy prevent favoring one arm, which would result in further weakening the other, but the repetitive movement of the therapy actually helps repair the brain in a process known as neuroplasticity.

When Allie first started therapy at Kennedy Krieger at 11 months old, she had no use of her right arm. “She flailed it, but she wasn’t grabbing anything,” says her mother, Michelle. Within a week of therapy, she began gaining control of her arm. Allie’s therapist, Jordan Sachse, made therapy fun for Allie, so she thought she was playing.

“When Allie saw Jordan, she would get so excited and start jumping up and down,” says Michelle. “You could tell how much Allie loved therapy.”

Allie continued therapy three days a week for three months, and made huge progress. She began moving her arm purposefully and playing with toys. “It was just a world of difference,” says Michelle.
Eight months later, she started another round of therapy, and Allie figured out how to open her hand and pick up objects. Now, she can string beads, walk around with a bucket collecting objects, and do all sorts of activities that come naturally to other kids. “She claps for herself. You can tell she’s just thrilled with the whole thing,” her mother says about the therapy.

She may never gain full use of her arm, but she’s come a long way. “Nothing cures hemiplegia or completely reverses the damage from stroke, but constraint-induced movement therapy can help patients like Allie regain function in their arms,” says Teressa Garcia Reidy, occupational therapist. “Allie has responded very, very well.”

Reidy and her team recently published a study on the benefits of using constraint-induced movement therapy in a clinical setting in the journal Physical & Occupational Therapy in Pediatrics. The study found the therapy benefited patients with a variety of causes of hemiparesis.

“We’re doing research with patients that’s very applicable to other clinics--it’s not just in a lab, it’s real practice-based clinical research,” she says.

Although Kennedy Krieger has been offering constraint-induced movement therapy for several years, the program for infants is new, and it is one of the few in the country offering therapy to very young patients. Michelle made multiple inquiries and couldn’t find a program that could help Allie, until she found Kennedy Krieger.

“We are always looking for new ways to serve the needs of patients,” explains Reidy, “And we realized there was a need for constraint-induced movement therapy for younger kids like Allie.” When Allie started therapy at 11 months, she was the youngest patient in the program.

“We didn’t want to wait and miss out on the progress she could make,” Michelle explains. Without this therapy, she says, “I don’t think Allie would have nearly as much functionality as she does…When she first started therapy, Allie had no use of her right arm. Now she waves, blows kisses, and gives high fives. I can't thank Kennedy Krieger enough.”