Thursday, May 31, 2012

Constraint Therapy is DONE!

Allie finished constraint therapy today!  Can you believe it?

1. Grasping a toy for 5 seconds.  
Initial assessment: She currently has a hard time independently grabbing an object but once she has it, she can hold on to it for a long time.
Final assessment: She has no problem at all holding objects for well beyond our hoped for 5 seconds.

2. Grasping a toy with finger extension and abduction---basically going from a fist to a fully stretched right hand, comparable to how you would hold your fingers out to tell someone you want 5 of something.  
Initial: She is just starting to try to abduct Righty and are really hopeful that therapy will help push her along.
Final: Total abduction!  Sometimes her thumb and index finger only open half-way, but she is completely capable of opening all of her fingers all the way.  

3. Shoulder flexion of at least 100 degrees.  Initial: She has pretty good shoulder flexion but it takes a lot of thought. We hope this movement becomes a little more natural with the therapy.
Final:  She lifts her right arm all the time, with and without the cast.  Lately, we have been asking "How big is the baby?" to which she lifts both arms straight above her head.

4. Consistently reaching to toys placed at midline of body.  
Initial: Allie currently doesn't do this at all.
Final:  She reaches for objects at midline, to her left side, behind her... you name it!  

5. Sustaining grasp on toy and successfully bringing toy to mouth.  
Initial: She can hold an object and bring it to her mouth with Righty, but she does move her head around to help shorten the distance between hand and mouth.
Final: Pssshhhh... no problem!  She doesn't hunch her head over any more and she can even turn her wrist a little lick her palm.

6. Protective extension forward to quick weightshift---see below how the girl's arms both go in front when her therapist pushes her forward.  
Initial: Allie is inconsistent at best on this. She will put her left arm out but usually not her right.
Final: She didn't make a lot of improvement on this one.  However, she has made huge improvements in her overall weight bearing through her right arm.

Overall, we are incredibly pleased with her progress.  We will likely be repeating the intensive constraint therapy in early 2013. 

They have camps for slightly older kids that we might do too when she can.  I saw the current constraint group today and I honestly could not tell that two of the three kids had any problems with using their hands.  They are all kids who have been doing the regular constraint therapy there and it seems to be paying off.

Allie has her aquatic therapy evaluation on Tuesday and I am really excited to learn more about what they do.

The big news for the week is that Allie and Jonathan are going to MN for the weekend for our niece Erika's high school graduation party.  I can't go because I have a work meeting all weekend.  I'm bummed and I'm going to miss them so much!  This is the first time that Allie has traveled with me... sigh, I might just sleep in her room all weekend cuddled up on her pillow crying.  They better send me lots of updates!

Wednesday, May 30, 2012

New Word and New Righty Moves

On the way to daycare today, Allie debuted her new word: tree.  She pointed to a tree and declared "teeee!"  Then, every tree got the point and the "teeee!"  I was ridiculously excited and she was very proud of herself.  

I then had a parent-teacher conference and all of her teachers said that she is making fantastic progress in all ways.  They also had some new ideas to encourage her walking; she will now be getting an additional teacher to assist her in walking out to the playground instead of hitching a ride in the stroller.  I think it will be great motivator for her because she LOVES the playground.

Tomorrow is Allie's last day of constraint therapy and I am going to go ahead and call the whole thing a success.  We were doing her homework tonight and Allie figured out how to release an object. This is the first time that she has ever done this!  I never could figure out why Allie could open her hand to grasp something but couldn't open it to let the object go.  Well, now I don't need to wonder about it anymore.  Watch Allie drop her apple puzzle piece in the box without thinking anything about it.  She helped me put away of her puzzle pieces.

Tuesday, May 29, 2012

More Zoo Photos

One of the other parents took a bunch of photos during Allie's first field trip to the Smithsonian National Zoo.  Check out Allie and some of her friends watching the turtles.

"Oh cool, the turtles are swimming by the waterfall."

"EVEN COOLER... my friend is going to go swimming with them!"

Sunday, May 27, 2012

Hanging out with the Family

Chilling at the Museum
We had such a good weekend with Sam and Blake.  We spent Saturday walking around DC in the ridiculously hot and humid weather.  We went to the Smithsonian National Museum of American History.  Allie liked the light bulb exhibit best.

On Sunday, we mostly hung out so that Blake and Allie could hold hands.  Whenever Blake would dare to try to use his arm for anything other that cuddling with Allie, she would dramatically grab his hand and lead it back to the proper cuddling position.

"OMG!  Did she really just text us that?"
Cuddling with my Auntie
"HAAATTT!!!"  That's what Allie would say every time she looked at Blake.
Giggle fest
In other news, Allie figured out how to clap today and it is so cool!  She would start a clap and then look around to make sure that we are all caught up and clapping with her.  We also had to lower her mattress in her crib, which makes her feel like a very big girl.

Friday, May 25, 2012

Auntie Sam and Uncle Blake Visit!

Allie has had a very busy week!

She had an appointment with her physiatrist (physical medicine and rehabilitation doctor who manages all of Allie's physical progress and therapies) this week and she was so pleased with Allie's progress. We talked about aquatic therapy, which is like physical therapy but in the water, and Allie will be giving it a shot at some point this summer.

She also met with her speech pathologist who won't be seeing her again in the near future because she is doing so incredibly well with her talking.  She consistently says the following words now: ball, balloon, bubbles, hat, Allie, clock, and car.  Her constraint therapist keeps talking about how she can't tell if Allie is going to be a total tomboy with her love of cars (she makes the engine noise as she pushes toy cars around) or a girly-girl with her love for bracelets, necklaces, and all things that sparkle.  Maybe a little of both?

Today was Allie's first field trip with her daycare.  We went to the Smithsonian Zoo and I swear there were more parents on the field trip than there were kids.

Allie was really into it at first and was excited to start off at the petting zoo where she got to see some cows up close. 

Then we stopped at a waterfall, which she really liked.  There were some turtles in the pond that required pointing and "DAAAT!" (aka 'that') declarations. 

Then we went to see the pandas and... Allie was out.  She soundly slept through the rest of her trip.  It made me feel better that many of the other kids zonked out too.

After the zoo, we drove up to Baltimore for some constraint therapy.  Allie got to meet a 5-year old in utero stroke kid named Lauren.  She was pretty darn cute and came up and gave me a high five with her affected arm.  She rocked.  Allie had a great session and continues to impress me with her right handed action.  As we were leaving therapy and she grabbed a rope that was hanging from the ceiling with two hands and was pulling on it and shaking it.  Amazing.

Allie slept the whole way home and was SHOCKED to see Auntie Sam and Uncle Blake when they arrived at our home.  She proceeded to fawn at Uncle Blake's hat, which he kindly let her wear.  And, Auntie Sam let her wear her necklace and relax on her lap.  She got to show off all of her new words and had fun making hats out of non-hats by putting anything she could on her head and declaring it a "HAAATTT!"  It was a good night for Allie.

Wednesday, May 16, 2012

Watch Allie Sit Up!

Allie first surprised us with her sitting up a couple of weeks ago in her crib.  After many nights of spying, we discovered that she was using her pillow as a prop that gave her an initial head start and she was able to pull on it to get herself up.  

Creative? Yes.  Proper form? Not so much.

Today, Allie finally got her form down.  Watch her pop herself up without any props!

Allie also has a speech evaluation today that went pretty well.  It was just an informal evaluation, but the speech pathologist thinks that Allie's speech development seems relatively on track.  We will have a full evaluation next week and will have a better idea then of where Allie is really at.

Two-Handed Peg Playing

Check out our baby girl using both of her hands to play with pegs.  My favorite is the bottom picture where she put the two pegs together!

Budding artist or chalk connoisseur?

Perhaps neither?  Allie's teacher just sent us a video of Allie during "art time".

Saturday, May 12, 2012

Allie and the Beads

Here is a video of Allie playing with the beads.  The photos I posted yesterday don't do it justice.

Happy (Pre) Mother's Day

In honor of Mother's Day, we would like to present you with some cute (and often embarrassing) photos of our own mothers.  Enjoy!

Bonnie, Jonathan's Mom

Baby Jonathan

Jonathan's response to seeing this picture:  "OH MY GOD!  That was the best book ever!  I wonder what happened to it?"

Jonathan being super happy.  I'm loving the shoulder pads!

Jonathan's college graduation

Communal bath time with Jonathan, Sam (Jonathan's sister), and Bonnie

Jonathan, Bonnie, and Sam in a hammock

Jonathan being the favorite child while poor Sam digs for attention.  The double nostril pick is a good look, Sam!
More Baby Jonathan

Carol, my mom

Not murdering people, just cutting down a Christmas tree with my mom's then-boyfriend's kids

Hanging out after my mom picked me and my friend up from summer camp

My mom, my grandma Marilyn, and me

Posing by the waterfall

Glamor shot

Your guess is as good as mine as to what my mom is doing here.  The green Jeep was a staple of my childhood but I don't remember the "I HEART CRABS" bumper sticker.

Mommy and me swim classes

I think I got too big for this

Being amazed at the Ice Capades.  I remember thinking that my fiber-optic sparkle wand was the world's coolest thing.  I brought it home and played with it until the batteries died and half the fibers broke off.

Friday, May 11, 2012

Check out Allie's AMAZING night!

Yo Mama, what's up?

Yeah, I can totally bend down and pick things up off of the ground with Righty.  No big deal
What do you really think that I am going to do with this?
OK.  I guess that I can do this.

Just moving the beads...

This requires a lot of concentration.

Stupid car going and crashing.  It makes me so mad!

Pre-Pre-Mother's Day

I got a wonderful Mother's Day gift today from Allie (courtesy of her teachers).

Allie painted the flower pot herself and the picture is of her doing it.  The flower is a pen.  I love it!  She also made me a card filled with her beautiful artwork and adorned with a right hand print.  It is so cool!

One of her lovely teachers gave me some gorgeous homemade soap and a homemade cupcake.  I like Mother's Day!

Muscle Baby

   Allie's new favorite thing is to ride on Dada's shoulders.  She gets up there and cannot stop laughing.  She often belly laughs to the point where she is hunching over Jonathan's head and she loves to stick her fingers in his ear and watch him jump.  

Allie had a kick-butt constraint therapy session yesterday.  She saw her therapist, lifted up Righty to give her a high-five, and then was using her right hand to do all sorts of things that I didn't think possible.  Her therapist even pointed out that Allie is getting some muscle definition in her right shoulder because she is using it so much.

I am very encouraged that she is able to do so much.  Her therapist and I were sitting there amazed that Allie was picking up bracelets, chewing on them, blowing kisses, pushing buttons, and doing all sorts of other things with a hand that a few months ago was a tight little immobile fist.  She has come a long way.

We have been trying many different forms for e-stim.  We focused on her bicep for a couple sessions but it didn't seem to do much.  Allie is gaining control of her bicep on her own so she would fight the forced bicep motion.

Then we tried e-stim on her forearm to help get some extension (think of the motion that you would do if someone was walking towards you and you wanted to tell him to stop).  This too didn't seem to do much because Allie's wrist is typically pretty straight, which is a great thing because it makes her cerebral palsy less noticeable than if her wrist was constantly in flexion (bent down as if you were trying to touch your wrist with your middle finger).  Wrist flexion is pretty common with cerebral palsy.  Being able to control wrist extension is important.  Think of how your wrist moves when you try to pick something up; it almost always extends a little bit to make the palm of your hand more open.  Allie is starting to do a little wrist extension when she is trying to pick things up with Righty, but mostly her wrist is rigid as if she has a ruler strapped onto her forearm that goes to her knuckles.

Yesterday, we tried estim on her forearm and her thumb to create a little wrist extension and help open her thumb and pointer finger.  It worked beautifully.  Allie was able to get her hand more open than it normally is when she grabs things herself.  I think we finally found a good spot.

We also ordered a new splint for her called a Benik (see the picture to the right).  Her's will be dark purple---very fashionable.  This splint will help Allie get a more passive stretch for her thumb and will help put her wrist in a more relaxed position.  It is starting to turn in a little bit (known as a radial deviation).  Basically, her default position is with her wrist bent to the side so that her thumb is a little closer to the side of her forearm than it should be.  I know that my wrists often do this when I am typing on a smaller keyboard and after a while it gets pretty uncomfortable.  Our goal is to get Allie used to having her hand in an ideal position so that the muscles don't tighten up and make it more difficult to correct later.

Other than that, we are trying to get her into a crash course physical therapy walking class for the summer.  We really want her up and walking independently by the time she has to move into her new daycare class this August.  She is totally capable of doing it now but she can't seem to make the connection from walking with our assistance to independent cruising.  I'm sure one day she will just get up and walk away from us (I'm envisioning this happening during an occupational therapy session where we try to get her to put silly pegs in silly holes---she really gets annoyed with us then).  But, until then, we will just keep walking her around.  Her daycare teachers keep telling us how sore their backs are from hunching over to walk Allie places.  They are the best teachers ever for constantly trying!

Tuesday, May 8, 2012

Epileptologist Update

Allie visited her epileptologist today and it was a good and bad appointment.

She will be working down on Topamax and will hopefully be totally off of it in three months!  This would be a great thing because Topamax is known to cause grogginess, speech delays, and a loss of appetite;  Allie needs none of these things.

The idea of adjusting her medication is scary but in an exciting way.  On one hand, we don't want to mess with a good thing.  She has been seizure free for nearly three months and it has been a glorious three months.  On the other hand, we have already taken the Topamax dosage down twice so far and each time she has seemed a little clearer.  Here's to hoping for a good thing.
The second and not so great thing is that Allie's peripheral vision on her right eye might be impaired.  We were warned that this could be a complication from the stroke but it is still a bummer.  The doctor held an object in front of Allie to get her attention.  Then, she held her other hand way out to the side and wiggled her fingers.  When she did it to the left, Allie immediately looked at the wiggly hand.  When she did it on the right, Allie didn't look over.  The doctor moved her wiggling hand slowly closer towards the front of Allie's vision and she didn't notice it until it was about half way to her nose.  Bummer.  We will be following up with a neuro-ophthalmologist at some point but there aren't any more conclusive tests that can be done until Allie is old enough to follow instructions and answer questions.

In other news, Jonathan almost got in three car accidents on the 15-minute drive home from the doctor.  It was a tense drive.  

Check out some snapshots from Allie's constraint therapy practice tonight.  She picked up the necklace, waved it around, and then put it in my hand.  It still shocks me when she does something this amazing.