Thursday, January 31, 2013

Port Discovery

Allie was a rock star during her constraint therapy on Tuesday.  She spent a solid 30 minutes picking up ping pong (and ping pong sized) balls and putting them down a crazy toddler-proof marble ramp.  She was doing such a good job and I was so proud of her!  There were at least a few times when she got her hand all the way open and her pointer finger and thumb properly wrapped around the ball all by herself.  I think she knew she rocked it.  Whenever she would get the ball all the way onto the top of the ramp, she would clap and cheer “I DID IT!” 

After therapy, I decided to surprise Allie with a trip to a children’s museum in Baltimore called Port Discovery.  It was probably the coolest place that I have ever been and I only wish that I could have gone there when I was young!  There are three stories of a crazy jungle gym maze with rope bridges, tubes, and ladders.    There are fully stocked play grocery stores and diners where the kids can buy and pretend cook fake food.  There were cool ramps and climbing obstacles all over with conveniently placed pads for when the kids wipe out.  They had an art room, a story time room, a soccer area… it was seriously amazing.

Allie liked it just as much as I did.  From the moment we walked in, she was running.  I took all these pictures but she is just a little blonde blur in all of them.  

Exploring the fake trees
Run... Run... Run...
Playing with bins of stuff

Crashing story time with the older kids

She really loved the toddler room, where they had a puppet show and lots of balls to play with.  She kept surprise throwing the balls this poor crawling baby.  This little baby was quite a trooper and still seemed to like Allie, even after having the ball thrown at her head 5 times. 

"Hey, baby...  BALL!!!!"
Peek-a-boo with herself

Checking out the baby circle, and supporting herself with Righty to do it
We explored Dorothy’s house from the Wizard of Oz.  Allie loved the slanted floors and the music.

She also loved the parts of the massive jungle gym that she could get too.  There was this little alcove that was perfect for someone of Allie’s size to sit in and watch the big kids.

Running on the jungle gym
And, there were buttons all over the place to touch.

But, my favorite part of the whole place were the stairs.  Allie was so excited to get to different parts of the museum that she walked (yes, WALKED!) up and down the stairs and didn’t think much of it.

Up the stairs...


Down the stairs...


She effortlessly maneuvered the stairs with 3-4 steps without so much as an “I DID IT!”  She then got to a big staircase that was probably about 20 steps high.  She took those stairs on too.  She crawled up the first 75% and then got up and walked up the last quarter.

We were there for nearly two hours and Allie ran and ran until she could not run any more.  She would trip on something and then lay her head down on the ground to rest for a few seconds until she popped up and resumed her mad dash.

Must stand up...
I knew it was time to go when we got to a short staircase going down and she stopped, turned to me, and asked “Help?”  I picked her up to walk down the stairs and I asked if she was hungry.  She answered “Yeah!” and then signed for food.  With that, we left without so much as a fight.

We ate lunch and got in the car for the hour’s car trip home.  She slept the whole way.  I stopped for gas about a mile from our house and she briefly woke up while I was standing outside the car.  She gave me the biggest happiest smile and immediately fell asleep.

Our little excursion was so much fun for so many reasons but I think the most meaningful for me was that she was such a typical kid while we were there.  She was running, exploring, and having so much fun.  It’s nice to be able to experience these normal childhood moments with her and we feel so lucky that she is capable of experiencing them with us. 

Sunday, January 27, 2013

Cart-crashing maniac

Allie LOVES this toy grocery cart that she got as a Christmas present.  Her favorite hobby is to throw her baby doll in the cart and then crash into people and things with it at full force.  Unfortunately for Jonathan and me, we were her targets today and spent the morning dodging the maniacal Allie and the danger cart.

Saturday, January 26, 2013

Allie in the snow

Allie helped her Dada shovel the sidewalk tonight and she was a little concerned with this snow business.  We let her go outside without her gloves at first so that she could touch the snow.  One hand full of it was all that it took for her to decide that she didn't like touching it.  She held up her snow covered hand, started whining, and saying "Coall!  Coall!" ("Cold! Cold!").  She was happier when she had cloves on and was very impressed by Dada's snow shoveling abilities.  Even though she didn't seemed thrilled by the whole process, she was sad when it was time to go inside.

Thursday, January 24, 2013

Constraint Therapy, Round Two

Homework Assignment #1

Today was the first day of Allie's second round of constraint therapy at the Kennedy Krieger Institute in Baltimore.  It snowed for the first time this season last night so we had to make the trek to KKI with some pretty unpleasant road conditions.  Allie didn't mind the extra long commute because she just slept in the car the whole (almost 2 hour!) trip there.  On a normal morning, it should take about an hour each way.

Today's session was two hours long, an hour for an evaluation and an hour for casting.  We did the casting first and Allie was remarkably good for it.  Last time, she melted down and sobbed during the whole casting process.  This time, she got to play with an iPad and listen to kid music.  Allie had to take a break at one point so that she could get up and dance.  She is a cute little butt-wiggling dancer.

She will be using a full arm removable cast.  It is basically the same cast as what we had at the end of last year's session but bigger.  It takes about 10-15 minutes to get the cast on and molded to Allie's arm.  We were happy when it was done but the super cool pink cast material that Allie picked was defective and the whole cast fell apart within minutes!  So, we had to repeat the process (dance breaks included) and made the much more solid white one that she is wearing in the video above.

After the casting was done, we walked down to the evaluation room to meet with another OT who was going to help out with filming the evaluation.  This part of the session didn't go as well as I had hoped, not because she couldn't do the things we were asking her to do but because she objected to being asked to do anything.  Every toy that the OTs handed her got thrown back at them.  At first they kind of chuckled but soon they just stopped handing her things.  The evaluation ended when Allie escaped from the chair that she was supposed to stay in, crawled out from under the table she was working at, stood up, declared "No!  Done!  Bye bye!" and stomped away.  Her Children's Hospital OT doesn't call her "The Diva" for nothing.

For the next 8 weeks, we will be doing an hour of OT at KKI three times a week for one hour OT sessions.  I'll be taking her on Tuesdays and Thursdays and Jonathan will be taking her on Fridays.  The goal is to work up to Allie wearing the cast for about 4 hours a day (2 hours in the morning and 2 hours at night).

She did her first hour in the cast tonight and it was great, as you can see in the video.  When she was getting ready for bed and the cast was long gone, Jonathan asked her where her head was.  She patted her head with Righty.  Then she pointed out her nose, teeth, ear, and butt with Righty on cue.

Last time we did this, we were so nervous about how everything was going to go.  This time, we are so excited about it.  She made such notable gains last time around and we are looking forward to seeing what she can accomplish this time.

Sunday, January 20, 2013

Manicure Time

Allie LOVES having her nails cut, especially on Righty.  This morning, she rushed into the bathroom, shut the door, and started rummaging through the closet.  She finally let me in and she handed me the nail clippers, said "More!", plopped down, and handed me Righty.  I clipped her nails and with each clip she said "Yeah!  More!"  We have a manicure addict in the making.  

Saturday, January 19, 2013

"That baby is meant to be here"

I had a regular checkup with my OB/GYN yesterday and we started talking about Allie's birth.  My OB didn't delivery Allie but followed us throughout my whole pregnancy and has been seeing me ever since.

I really like her because she is completely straightforward and never hesitates to say "I don't know."  I suppose it is strange that admitting not to know something has become one of my favorite characteristics in a doctor but I would so much rather have a doctor "I don't know but I'll look into it" than to pretend that s/he knows what the answer is.

The other day we finally got Allie's birth records that span about 400 pages---and cost $300!---and as Jonathan and I looked through them, some things definitely seemed unusual.  The first thing is labor length.  According to the records, I was in stage 2 of labor (also known as the "pushing" phase) for over 8 hours.  My OB said that she doesn't like to see patients be in this phase for more than 4 hours.

Another unusual thing was how long it took to get a C-section after it was decided to do one.  My OB said that the baby is supposed to be out within a half hour of calling for the C-section, but it was more like an hour and a half for me.

Lastly, and perhaps the most scary, was that Allie had a true "figure 8" knot in her umbilical cord that was discovered after she was born.  I remember the nurses making a big deal about it and the doctor bringing it over to show me, but at the time I didn't realize how rare this is.  We thought so little of it that we never even mentioned it to our regular OB.  When I mentioned it to her yesterday, she was shocked.  After a few seconds of silence she said "My heart is racing!"  I said "Is it really that unusual?"  She said "In living babies, it is really rare.  We see it most when babies die suddenly in utero and we don't have any idea why... until they're born with a true knot that just got too tight.  When you hear of it in a baby who was born alive, you think 'that baby is meant to be here.'"

I told my OB that I would make her a copy of the full birth records and she is going to look through them, graph how my labor progressed to see if the long labor times are accurate, and speak with the OB who delivered Allie about any remaining questions.  She also told me about these mandatory tests on umbilical cords that the insurance does to see if there is evidence of anything unusual (such as blood supply cut off) and she said she would track down Allie's results and let me know.  Based on Allie's MRI, we don't think that she ever had blood/oxygen cut off.  She very clearly had an infarct (blood clot), which is not caused by a lack of blood.  Still, we'll take all the test results that we can get.

For the sake of fairness and to make it clear that we aren't blaming Allie's stroke on a long labor and a weird knot, she seemed perfect after the birth and had great APGAR scores.

All of this made me reflect upon how lucky we are to have Allie.  The thought that she could have so easily died from something other than the stroke is scary.   I'm going to try to keep this in mind when she is throwing herself on the ground and sobbing because I won't do something for her.  Kind of like she is doing right now.

Thursday, January 17, 2013

Bath Time

Allie loves her bath time.  Here is a cute video of her enjoying her bath with Dada.  I especially like her use of "please", "yeah", and (of course) Righty.

Allie wasn't feeling well this morning so we cancelled all her therapy and had a relaxing day.  We spent at least an hour blowing bubbles while Allie lounged on my lap and giggled away.  She also found it hilarious how blinding the flash on my camera was.

She seems to feeling better tonight so we're hoping for a good night's sleep and a nice day a daycare tomorrow... Fingers  crossed.

Tuesday, January 15, 2013

Developmental Evaluation and PattiBobs

The new year is off to a good start.  Warning, this post has A LOT of bragging.

Developmental Pediatrician 

Allie had a checkup with her new developmental pediatrician today.  Our insurance got this doctor as part of the HMO and cut off our referral to the Children's developmental psychologist that we have been seeing for the past year.  Unlike the neurologist switch that didn't go so well, this developmental pediatrician is amazing and replaced the crotchety Children's doctor who was always so pessimistic about what Allie was capable of.  The new doctor was very mellow, very sweet, and both Allie and I loved him.  

We got the our 3pm appointment at about 2:45, checked in, and we took a seat in the somewhat kid-friendly part of the waiting room, which is shared with a pharmacy.  This is the first time we had been to this building and I was thrilled to find out that it is less than 2 miles from our house!  Allie had boycotted her daily nap and I was nervous that she was going to be a pain during the appointment.  Much to my surprise, Allie had more energy than ever and she was running circles around the waiting room and darting into the other specialty offices whenever she could.  I would grab her and carry her back to our sanctioned corner and she would kick and scream the whole way.  Then we would repeat.  After a few visits to the radiology wing, the receptionist started saying "Hi Allie!" as she barreled in.

During one of her frantic laps, she tripped on the transition between carpet and tile and faceplanted onto the tile.  Her mouth filled with blood and she burst out crying.  No more than two minutes later, the bleeding had stopped and she was back to her rounds, even showing the radiologist receptionist her wound.  

Come 3:30pm, the doctor came out to the waiting room and apologized for the delay.  Allie liked him right from the start.  We went into the exam room and she was thrilled to see all the bins of toys to play with.  She happily pilfered while I gave the doctor all her history.  He was impressed by all the therapies that Allie gets.  Then, it was Allie's turn to play.  He brought out a peg board that Allie had trouble with during her last appointment with the Children's doctor.  Allie dominated it, put all the pegs in, and asked for more.  The doctor got out another peg board with square pegs, and Allie quickly beat that one too.  He said that completing the square peg is about a 22 month skill, so it was good that Allie found it so easy.

Then it was time for the shape sorter.  Allie skillfully put the circle in the circle spot, the square in the square, and the triangle with the triangle.  The doctor then put it in all different orientations and Allie did them all.  Once again, he was pleased.

He moved on to the receptive language test where Allie had to point to the object that he named.  She got 7 of 10 correct, which the doctor said puts her at about the 2.5 year range.  

The next test was coloring/drawing lines and circles.  The doctor drew a horizontal line and Allie copied it.  He drew a vertical line and so did Allie.  He drew a circle and she drew a circle.  Dot... dot.  Once again, he was thrilled.  He said that she held her marker better than kids her age typically do.  

He got out a baby doll and Allie shouted "My Baby!"  He wanted to see how she pretend played with toys.  He handed her a little cup and asked her to give the baby a drink.  She held the little tiny cup up to the baby's mouth, gave the doll a sip, and said "Aahhhhhhhh...." as if the water was really refreshing.    The doctor couldn't help but laugh.  He then gave her a piece of a tissue and asked her to wipe the baby's nose.  Allie wiped the doll's and her nose.  Another chuckle.  Then he asked her to give the baby a hug and Allie tucked the baby under her right arm and hugged and rocked the baby for a few seconds.

Lastly, he got out some little blocks, lined them up in a row to make the train, and pushed his pretend train around the floor in hopes that Allie would follow suit.  Allie copied and shouted "go! go! go!" as she pushed her block train along.  Test, passed.  He then asked her to stack the blocks and she got 6 high until she stood up and dramatically kicked them over and laughed.  He said that he was hoping for 3 blocks high so Allie clearly excelled on that one as well.

There were then some gross motor tests of walking and trying to engage her right hand more.  

Come 5:30pm, we were finally getting ready to leave.  His summary remarks: Allie is scoring at or above age level on all cognitive and language tests.  Her fine motor is lacking but only in her right hand.  He said "when you read the records for a kid with a stroke and infantile spasms, you expect to see a certain kind of kid.  Allie is not that kid.  She is astounding.  This is no guarantee about her future success but, as far as I'm concerned, things could not be going better.  Keep up with everything you're doing."  

Freaking amazing appointment.  


At Allie's last Physical Medicine and Rehabilitation appointment (discussed here), the physiatrist suggested that we get Allie a foot and ankle orthotic called an SMO to help her right foot from turning out when she walked.  Allie's physical therapist strongly objected (discussed here) and pushed us to wait and decide after Allie had been a strong walker for a couple months.  That time finally came and the physical therapist recommended starting off with these intense arch support in-shoe orthotic called a PattiBob (shown to the right).  These are sold over the counter and just need a shoe-fitter.

On Sunday, the three of us went to a local store that our PT recommended.  This place was a mad house.  There was a 30-45 minute wait but they gave us a buzzer and we got to go next door to the toy store to pass the time.  Allie had a lot of fun and even managed to get in a fight with a little girl over a rubber ducky.  Finally it was our turn at the shoe store and Allie got fitted right away.  The PattiBobs were $71!  I was kind of shocked.  Then we had to buy extra-wide shoes too.  

While the shoe guy was in the back looking for Allie's size, Jonathan and I were balking at how surprisingly expensive the PattiBobs are while Allie played at the train table with the other kid (shown below).  Jonathan and I were chatting when Jonathan looks up and says "Ummm... She's gone."  Allie had disappeared!  After a couple seconds of panic, we found Allie wandering into the back room.  We still have to get used to having a walking child.

The shoe guy came back and during the fitting, we mentioned that Allie had a stroke which is why her therapist wants the PattiBobs.  He looked genuinely shocked and said "I've been doing this for 41 years and I never would have known if you didn't tell me.  So many kids with her diagnosis are wheel-chair bound and she's walking around so well.  I never would have known.  You are so lucky!"

We really are.

The PattiBobs are great and we noticed a clear improvement in her gait with just a little extra arch support.  I'm excited for her therapist to see her on Thursday.
Shoe store chaos 

Sunday, January 6, 2013

Glamour Girl

Jonathan and I have slowly been fixing up Allie's play room to turn it from a weird dark media room to a little girl's play space.  We finally finished the closet today and all of Allie's toys are now organized and within her reach.  She got up from her nap, came downstairs to the playroom, and was shocked by all her toys.  She kept saying "Whoa!   Whoa!"  It was super cute.

She now has a little jewelry dish with all of her necklaces and bracelets in it.  She brought all of them into the kitchen, put them on the ground, picked them up one by one and asked "More?" meaning "Put this on me".

Once she was fully loaded up, she toddled around the house slightly weighted down for at least 15 minutes.  She loved it.

Note the headband that Allie is wearing in the photo.  Her BFF Abby gave it to her on Friday and she hasn't parted with it since.  She even naps with it on.  Allie has a new favorite accessory.

Saturday, January 5, 2013

How did we not know?

Allie was ridiculously adorable today.  Here is a 1.5 minute long video of absolutely nothing in particular, except Allie finding a toy apple.  It is great how mobile and verbal she is!

While I was importing this video onto my computer, I started rewatching videos of Allie when she was younger.  I was watching a video that I had posted on the blog back in December 2011 (here is the post) and it was like being kicked in the gut.  At the 25 second mark, there was an infantile spasm.  This was a full 5 weeks before we thought we saw the first spasm.  Five weeks.  That is a really long time to have your daughter seizing in front of you and you not to notice.

Jonathan and I were sitting there staring at her and we missed it.  I have watched this exact video dozens of time and never saw it.  I always thought it was an outrageously cute video.  How did we not notice?

It's kind of like how we first noticed that Allie wasn't using her right hand as much as her left when she was about 4 months old but (with the help of an overly encouraging doctor) put off being pushy for another 3 months.  Three months.  How do you just sit there and say, "Gee, my kid isn't really using half of her body.  She must just be a 'strong lefty' (her pediatrician's words at Allie's 5 month checkup when we told her that Allie seems to be preferring her left hand)."

In the case of the whole stroke/cerebral palsy diagnosis, I think that I knew something wasn't right but I was also acutely aware that first time mothers think everything is unusual.  My philosophy was that most kids are fine so Allie must be too.  It pains me to think of all the therapy we could have gotten in during those three months.

Some good news: we can now say definitely that the constraint therapy did not cause the seizures, which is something that her therapists were worried about but we never gave much credit to.  The first time we saw a spasm was about a week into the constraint therapy.

It is awful how a year old video can make the seizure turmoil feel so fresh again.

Thursday, January 3, 2013

"Smart as a Whip"

Allie sees her cognitive therapist twice a month at home but I always forget when this poor woman is coming.  Most times she shows up and I'm all disheveled or Allie is asleep.  Today was another one of those days.

Allie and I went for a long walk to the park and grocery store, she woofed a giant lunch, and I was eating some cake (don't judge!) and mentally preparing to put Allie to bed when the doorbell rang.  Miss Hen (as we call her) was at the door.  I hadn't showered or brushed my teeth, there was food thrown on the floor, I had cake on my shirt (I feel you judging!) and Allie was laying on the floor in her playroom pretending to go "Night Night" with toys surrounding her.  Poor Miss Hen.

In spite of the chaos, Miss Hen jumped right into her games that are meant to test Allie's abilities to sort, match, and use things appropriately.  After a half hour of Allie happily playing all Miss Hen's games, Miss Hen said "I'll tell you what, Mom.  There is nothing wrong with Allie's cog (cognitive ability).  She is smart as a whip.  I'll keep seeing her twice a month for now, but we really should think about cutting it down."  

Miss Hen is also our service coordinator for the county's early intervention program, which includes Allie's in home OT and PT and speech evaluations.  She had the write up from Allie's latest speech eval with her today.  She proudly reiterated that speech therapy is not currently recommended for Allie.  

Today's was an appointment to celebrate.  Maybe I'll even remember our next date... but probably not.

Wednesday, January 2, 2013

Allie's Insurance Changes

Swim class from a couple weeks ago

We have had a few insurance changes lately and they're all great.  

The in-house neurologist who was replacing our existing pediatric stroke specialist neurologist has booted us and we get to continue seeing our specialist neurologist.  We were willing to give the other neurologist a try but when she didn't respond to several of my emails over a couple months, I started complaining about her Allie's pediatrician and her insurance case manager.  Soon enough, I got an email from Allie's pediatrician saying that the neurologist thinks that Allie should continue to be seen by the other doctor.  I must be more annoying than I even give myself credit for.

One of Allie's other doctors is a pediatric psychologist who keeps track of her developmental progress.  I have always hated this woman.  During our very first interaction with her, she said that there is no way that Allie could sign for milk (which she did) and that we were negligent parents for letting Allie have any battery operated toys.  She did have some good advice, like breaking Allie's pacifier and bottle habits, but I dreaded having to see her because she was so negative.

Allie's pediatrician cautiously broke the news that our insurance got an in-house developmental pediatrician and this person will be covered instead of the pediatric psychologist.  I was thrilled!  I don't think it was the reaction that the pediatrician was expecting.  We have our first appointment with the new developmental pediatrician in a couple weeks.

I love it when things just work out.

Christmas Vacation Recap

I didn't get a chance to post some of the funny Allie photos from our Christmas trip to California. 

Enjoying Christmas Eve

Loving Christmas morning

 Hating Christmas morning

Loving the merry-go-round.  She was devastated (as in throw-herself-on-the-ground-sobbing) when her two turns were over.  We'll have to try out one of the local carrousels sometime soon.  

Happy to be home and open more gifts.  Her Auntie Holly,  Uncle Joel, and Cousins Elliot and Noah sent her a mini grocery cart with a bunch of toy food.  Allie loved it so much that she couldn't even wait for me to put it together before she was throwing all the food in the basket.  As soon as I got it ready, she was off and running (and ramming the cart into furniture and walls).