Tuesday, April 30, 2013

Hand Washing and Botox

Allie had her semi-annual IFSP (Individualized Family Service Plan) discussion last week.  The only notable change is that we are going to change our in-home OT to focus on Allie's normal life skills, such as dressing herself and being able to pump her own soap when she washes her hands.  We're also getting a speech and vision evaluation.  A speech with just be another update but with a new speech pathologist who can come to our home and be around our allergy-plaguing cats.  The vision evaluation is to see if there are things we can do to remind Allie to look to the right in case her potential visual field cut is getting in the way.

Today was Allie's first OT session since the new IFSP and I was thrilled that we jumped right into the new plans.  I am happy to report that after one OT session and about 500 hand washing sessions throughout the day, Allie is an independent soap pumper!  It is amazing how much I never thought about how integral two-handed operations are in daily life.  Allie has opened my eyes in so many ways.

Look at that soap! 
I can't wait to do this at school!

After much debate, Jonathan and I may be changing our anti-Botox stance.  I had a long discussion with her Children's OT, who has been a strong proponent of getting a little Botox in Righty.  The OT and I talked all about what we would need to do if we decided to do Botox to make the most out of it.  I said that I was concerned that she would get too much and would lose the functionally that she has been working so hard to gain.  The OT said that Righty would definitely seem weak at first because we are taking away the high tone muscle that has been controlling everything and we would be forcing the rest of her muscles to build enough strength to make up for it.  We would have to do a lot of therapy.  We would have to push her to work hard in a new way.  We would have to hope that Allie doesn't have any of the side effects that I'm afraid of.

There was a moment today that may have swayed me in the Botox debate more than I would like to admit.  Allie and I were in a store and I was walking towards the cash register with Allie about 10 feet behind me happily carrying a brochure in each hand.  The cashier was watching us walk up and she rather loudly said "What's wrong with her leg?"  I was a little shocked and naively asked "What do you mean?"  She said "She's all like this..." and she limped around the cash register area and a couple of the other nearby customers stopped to observe.  I  matter-of-factly and with a smile told her that Allie had cerebral palsy because she had a stroke.  The woman just said "OK" and we rang up our stuff and left.  I don't think the woman meant it to be mean; I think she just had no idea.  Still, I think we owe it to Allie to at least try to help lessen the limp if we can so that she doesn't have to deal with quite so many ignorant people later.

We'll be arranging an appointment with her two PM&R doctors and maybe her PT to discuss the possibility of maybe doing Botox on Allie's calf and hand.

Monday, April 29, 2013

Righty in Real Life

I just wanted to share some cool photos of Allie using Righty in her normal life today.

"Mama, which should I make a mess of first: your deodorant or your moisturizer?"  
"Look Mama, I can throw my bowl on the ground using both hands!"
"Mama!  Mama!  Mama!  Book?  Mama!  Mama!  Book?"

It really makes me so happy that she is figuring out how useful Righty is.

Observed Mother's Day

I'll be out of town for real Mother's Day this year so Jonathan and Allie threw me an "Observed Mother's Day" this Sunday instead.

They surprised me with a beautiful flower pot with plants that they picked out and planted earlier in the week.

You can see some of our destroyed front yard in the background.  We ripped out all of this weird rock that was covering half the front yard, got a bunch of dirt delivered, and are anxiously awaiting our weird blue grass seed to turn into real grass.  Soon it won't look so strange... at least that's what I keep telling myself.

On Sunday morning, we went out to brunch and Allie was a very good girl.  She no longer will sit in high chairs at restaurants but is reasonably well behaved to make herself deserving of the booth-sitting privilege.    

After brunch, Jonathan graced me with a window shopping trip through Ikea.  I don't think there is a single place in the world that Jonathan hates more than Ikea, so this was a very nice gesture on his part.  

We then went to the park to play with Allie's friend Lalo.  The scale is all off in this photo, but Allie and Lalo are nearly the same size.  Allie is just sitting in the jumbo seat and is father back so she looks miniaturized.     

We then drove out to the farm where out milk comes from and got to meet the cows.  I swear, one of my favorite things about this house is that we have a milkman.  Allie has been obsessed with the Baby Einstein Baby MacDonald video and she really liked seeing the cows, the barn, the chicken, and the fields in person.  The farm was pretty cool and we got some delicious homemade ice cream for the drive home.

Allie and the calf bonding
Deciding which ice cream to order.  She eventually chose chocolate chip cookie dough.
It was a really nice day and it almost makes it OK that I'm going to be away for the real thing.

I also want to take a moment to acknowledge that this is the 200th Allie blog post.  Thank you for continuing to watch Allie growing up.

Friday, April 26, 2013

Daycare Picnic

Allie's daycare had a picnic today and Allie had a lot of fun.  She liked pushing around the little cart shown above.  She kept telling me to get in.  Look at how great Righty looks!  Allie also played with the hula hoop and all the balls that we scattered around.

There was one really weird moment when I overheard someone ask an older kid's dad how his son's tone was doing.  He responded saying that his son is doing a better job of getting his heels down when he walks.  I looked over at the kid and he is was completely toe walking, which is really common with cerebral palsy.  I introduced myself, apologized for eavesdropping, and explained that we deal a lot with muscle tone too.  He stared at me blankly.

"What are you talking about?"
"Oh, I'm sorry.  I just heard the word 'tone' and thought I'd introduce myself because we deal with it a lot with Allie's cerebral palsy."
"Hmmm... we don't deal with tone.  Nope."
"Oh... OK.  I must have misheard."   
"OK.  Well, Allie had a stroke and when she walks, she is a little on her toes."
"Ummm... nothing is wrong with him.  My son is just big for his age and his legs can't keep up."

At this point he starts looking awkwardly around and backing away from me.  Totally not what I was going for.

After the picnic, we headed home and Allie got a big kick out of wearing my sunglasses around.  Here is another long video of her wandering around the house.

Tuesday, April 23, 2013

Neurology and PM&R Appointment

Today was Allie's semi-annual Neurology and Physical Medicine and Rehabilitation appointment.  The following are the key topics that we covered.  (You can read about our last appointment here.)

Allie's EEG last week looked really good.  There were still abnormalities, as we expected, but her neurologist said that it was "great".  She also encouraged us to avoid the temptation to pull Allie off the meds, which she said is typically the urge once a kid is seizure free for over a year and has a good EEG.  I said that we have no strong desire to take Allie off the medication because we don't see any side effects from the Trileptal.

Allie's physiatrist observed Allie walking and he suggested that we consider Botox and a brace for her right leg (probably an SMO, which goes a bit over her ankle).  The physiatrist said that the ball of Allie's right foot touches the ground just slightly before her heel does and this is messing with her gait.  He said that this seems like Allie's tone is kicking in while she is walking even though her leg seems pretty loose when we stretch her.  Our physical therapist was very against us getting just one SMO for her foot instead of one for each foot because she said that it can exaggerate a limp.  The physiatrist asked us to connect him with our PT so that they can discuss the best approach for Allie.

I talked with Allie's neurologist privately about the botox and orthotic.  She said that she would recommend that we start with just the splint and see if it helps at all and then consider the Botox if the splint doesn't help enough.  She said that it is not like Allie is at an important junction and we have plenty of time to find something that works for Allie.  Her concern is that Allie will hit the age when all of her friends are running around and that her gait inconstancies are going to keep tripping her.

We'll put our PT in contact with the physiatrist and see what they come up with.  But, I don't think there is really any harm in trying the splint.  I don't want to jump into the Botox though because Allie has to be totally sedated for it and I'm worried that she may get too much and have a hard time walking.  We shall see.

The neurologist was thrilled with how much progress Allie has made with her right hand.  She was surprised that we already did a second round of constraint at KKI, but she said that the results really show.

There has been a speech specialist who has sat in on a couple of our neurology appointments and, while she wasn't at the appointment today, the neurologist officially asked if we would be willing to participate in the language specialist's study.  I said yes, and we will likely be doing a functional MRI in a few years to map how Allie's brain has re-wired itself.  I think it sounds pretty cool.

Birth Records
I passed off the monstrous stack of Allie's birth records to her neurologist when we were there for the MRI last week.  The neurologist hasn't spent much time going through them yet but she promised that she would get through them this week.

I absolutely adore our neurologist.  I love how open she is and I really feel like we can talk about anything with her.  When Allie and I finally left our appointment, it was an hour and a half past when our appointment started and I felt like our neurologist would have happily spent another hour just chatting with us.  Also, I shockingly discovered that we didn't really have a referral for the physiatrist (I forgot to have it renewed before the appointment) so the neurologist smuggled the physiatrist in for a "consult".  They are the best!

Monday, April 22, 2013

The Climber

I picked up Allie from school this afternoon and she and some friends were climbing on the tree house on the playground. I asked her teacher if Allie got up there by herself and she said "Oh, yeah!  Allie climbs on everything.  I'm always telling her to get off of the table and all the other things that she's not supposed to be on.  She's a climber."

Our daughter is a climber?!?  Amazing.

National Walk for Epilepsy

Saturday was Allie's second annual National Walk for Epilepsy.  Thank you to all of you who donated and helped make our walk a success!  We raised $800 for the Epilepsy Foundation!  

Our friends Chris and Shara and their wonderful son Jacob joined us for the walk, just like they did last year.  

I was lazy and didn't pick up our shirts ahead of time so I had to wait in a stupidly long line to pick them up before the race.  I was standing there when I suddenly heard a familiar voice.  I turned around and Allie's former epileptologist was standing right behind me (you can read about our couple appointments with her here and here).  We only saw her a few times so I re-introduced myself and we chatted while we worked our way up in the line.  She wanted to hear about what we think really stopped the Infantile Spasms.  I said that it was probably the combination of ACTH and Trileptal, but that the Trileptal seems to be holding the seizures at bay with no discernible side effects.  Jonathan brought Allie over to say hello and we parted ways after getting our shirts.  It was a nice blast from the past, but I can't tell you how relieved I am that we don't have to see her medically anymore!  

The walk got off to a good start.  Jacob kept trying to make Allie laugh, and Allie obliged a few times.  She wasn't in the best mood and she kept pulling the stroller cover over her head for some alone time.  I can't say I blame here; it was windy and a little chilly. 

Not loving the wind

Photo bomb!  Check out the woman behind Allie's head.

Chris, Shara, and Jacob (the trooper)  

It was a good walk and I'm very glad that we did it.  It is also wonderful to feel so removed from the seizures.

Wednesday, April 17, 2013

Routine EEG and Theme Week at School

Yesterday, Allie had a routine EEG in preparation for her semi-annual joint Neurology and Physiatry appointment.  We haven't seen any seizures since February 2012 and had her last EEG when she had been seizure free for just a week.  This EEG was just to see if Allie is having any epileptic activity (unusual brain waves) that may not be reaching the level of causing a seizure.  The damage from the stroke will most likely always create some unusual activity because neurons that want to fire with neurons that were damaged can't complete their connection and can create erratic firing near the area of the stroke.

Allie seemed much more mature during this EEG than she was during her previous EEGs.  She still cried through most of it but she seemed like she was capable of composing herself, she just chose not to do it.  We got home and she took a long nap, then we walked to a local restaurant to have happy hour with Jonathan after he got off work.  Allie was happy to spend some time acting like a big girl and telling Dada about her long day.


This week is themed week at Allie's daycare and she is digging it.  

Monday was pajama day.  Allie wore her favorite PJs and brought her flash light along to have a pretend sleep over.

Today was costume day.  Allie was a hippie in a flowy jean dress, a fringe tie-dye yellow shall, and flower clips in her hair.  She liked it a lot, especially the flowers.

Tonight, she and Dada relaxed by watching some Baby MacDonald and then off to bed.

Can you believe how big she is getting?  I look at her and marvel at how grown up she looks.

Monday, April 15, 2013

Fun Weekend

Allie, Jonathan, and I had a really fun outdoor weekend. We did a ton of yard work and Allie liked to help. She brought out her rake and was copying everything we were doing.

During our breaks, we would go for walks around the neighborhood. Allie decided that she likes holding hands with me a few weeks ago, which is a big change from the strong objections she had before.  She also loves picking up sticks along the way.  On one of our walks, she picked up a stick with her left hand and then decided that she wanted to hold my hand too.  So, she reached up and grabbed my hand with Righty and held it as we walked down the street.  It was a good, strong grip and it made me so happy.

On another walk, she found a golf ball and treated it like it was prized possession.  She carried it the whole way with her.  But then… she saw a particularly attractive stick.  She thought about it for a moment, bent down and picked the stick up with Righty and went on her merry way; a stick in one hand and a ball in the other.  She (and we) thought it was pretty cool.

Allie’s language is picking up too.  She is mastering the 2-3 word sentences and loves trying out new combinations.  Some of my favorites from this weekend:

While we were going on a walk: “Dada walk.  Mama walk.  Allie walk.”

When Allie and I went to wake up Jonathan (poor Jonathan): “Mama up.  Allie up.  Dada night-night.  Dada want up!”

When the cat jumped on the couch next to Allie and me while we were watching Jonathan finish some yard work outside: “Mama and Allie sit.  Cat up.  Dada walk.”

When looking for her doll: “Baby?  Baby? Oh no, baby night-night.”  She then put her index finger up to her lips and whispered “quiet.  Baby night-night.”

I also caught her trying to sweet talk Jonathan into giving her more peanut butter (we have a rule that she only gets “buttah”, as she calls it, for one meal a day). 

“Yes, Allie?”
She coyly walks over to the chair he is sitting on and rests her head on his lap. 
“Nana?” (which is her word for hungry) accompanied with her signing for food.
“Yeah?  What do you want to eat?”
“More buttah.  Yeah, more buttah.  Cracker.” (meaning, I want peanut butter on a cracker.)
Jonathan laughed and said “no, Allie, you’ve already had butter today.”
“Yeah, more buttah.  Pleaseeeeee?  More buttah!” all the while, she is smiling and cuddling with him.

They continued bargaining for a while and then settled on yogurt, which made everyone happy.  Even Righty.

Thursday, April 11, 2013

PattiBobs are gone... for now

Allie had her first PT session in 3 weeks and I was so excited to show her PT all the new things that she could do.  Unfortunately, Allie had other plans and she pitched a fit and cried through most of our activities.  She even butt scooted down the stairs to make her protest perfectly clear.

I was talking to our PT about Allie's PattiBobs (the in-shoe arch support that Allie has been wearing in her shoes).  We let Allie wear whatever shoes she feels like wearing on a given day and only sometimes does she pick the shoes that have the PattiBobs in them.  The other day we were walking to school and I noticed that she was walking a little lopsided and that she was wearing the shoes with the PattiBobs.  The next day, she was wearing normal shoes (without PattiBobs) and she seemed to be walking better.  I asked the PT to look at Allie walk with and without the PattiBobs to see what she thought.

Test 1: Without shoes
Allie's feet still pronate (arches touch the ground) but it doesn't look as dramatic to me as it used to.  Still, it is clear that she needs arch support.

Test 2: Shoes with PattiBobs
The PT was horrified to see that Allie's whole right leg from the knee down was turning in while she was walking.  The PT said that she was worried that there could be some hip issues going on.  Oh no!

Test 3: Normal shoes
Allie's leg straightened out and she wasn't visibly pronating.  So, no hip problem (phew!) and no more PattiBobs.

We're going to give Allie a month long break from the PattiBobs and then test them again to see how things are going.

I am more than happy that she doesn't need foot/leg orthotics right now.  I had this fear that once we started going down the orthotics road with the PattiBobs that there would be no turning back.  I'm happy that Allie has proven me wrong, again.

On a playful note, Spring has hit with full force and it has been in the high 80s/low 90s the past couple days.  Still, Allie won't part with the wolf hat.  Her head gets all sweaty and she keeps telling me that she's hot ("Allie hottt!") but she cries when I take off the hat.  I hid it today; we'll see if she remembers.

Wednesday, April 10, 2013

Countdown: 10 Days Until the National Walk for Epilepsy

Allie's Gators will walk in the National Walk for Epilepsy in 10 days.

Please help us make this walk a success. 

Tuesday, April 9, 2013

Therapy Kickoff

Enjoying some Abby time last week

To end Allie's glorious 2.5 weeks off, she had two OT appointments this morning and a trip to my nemesis pharmacy.  Her Children's Hospital OT hadn't seen her since we started constraint therapy and she was thrilled will all the new stuff Allie is doing.  The county OT who hasn't seen her in 3 weeks was also shocked.  I think she liked impressing them because she was unusually well behaved for both appointments.

The county OT is still relatively new with us and is still trying to figure out what works best with Allie. I commented that Allie typically prefers if we tell her to "use Righty" and then help her use it rather than just jumping in and helping her without any verbal cue.  After a few attempts at both ways, the OT said: "You're right!  I usually work with kids who don't have as strong of language processing skills as Allie."  Score.

Monday, April 8, 2013

Therapy Spring Break

A combination of spring break for our in-home therapists, poor management of Allie's referrals (the Children's OT referral expired two months ago and I didn't notice!), and my lingering cold has left Allie therapy-less for the past 2.5 weeks.  Normally this would be stressing me out but I swear Allie makes more gains when we give her a chance to figure out how all this therapy stuff applies to her real life.

Here are some of the cool things that Allie has done since her last therapy session:

  • Grabbed a plastic cup in her right hand so that she could put crayons in it with her left
  • Opened both doors of a cabinet at the same time, one door in each hand
  • Picked up two sticks, one in each hand, during a walk to the park
  • Mastered the "Open Shut Them" song with Righty
  • Goes around the house picking up objects with Righty and giggling
  • Picked up a big ball with both arms to put it in a basket  
  • Walking up and down stairs totally on her own without us hovering over her

The list goes on and on! 

Several of Allie's therapists and her physiatrist have told us that strategic therapy breaks are important to allow her therapy skills to transfer to her life skills.  Still, I often have a hard time just letting her relax.  I should work on letting her be the fun little kid that she is.

Here is a picture of Allie showing off her stair skills while we lounge on the beautiful deck that my dad built us.

We all really enjoyed having my dad here.  Not only did he build the awesome deck, but he made two previously unusable exterior windows usable again and helped us get rid of this weird cement walkway that abruptly ended in our front yard.  Allie enjoyed the extra Granpa time as well.

Monday, April 1, 2013

Happy Easter!

Allie had a great Easter this year.  Her BFF Abby had an Easter party and Allie figured out how the Easter egg hunts work and that there was candy inside some of them.  Last year, Allie was kind of confused by the whole event (check out how little she was last year here).  

The rest of the weekend was spent hanging out with my dad (Granpa) and her Uncle Mikko, who drove across the county to visit.  Mikko and Allie bonded over Baby MacDonald on YouTube... 

... and she couldn't wait to get up in the morning and wake him up.  He was a very good sport about it.

Granpa has spent most of his time here in our backyard building us a deck.  Allie likes to oversee the activity and knock on the sliding glass door whenever she thinks Granpa is slacking.  She'll make a good foreman some day.