Friday, January 31, 2014

Super Reader

Photo from Allie's class

We came across the PBS TV show Super Why the other day and Allie and I both completely fell in love.  It's a show about a group of friends who solve problems by drawing analogies to stories found in books.  The friends turn into a group of superheroes, named The Super Readers, when faced with a problem in their lives.  The problems are usually pretty normal, like "My baby sister is crying and I don't know what she wants" or "My friend is mad because I ate his cookie without asking".  They get together, talk about it, and then go and explore a story to figure out what to do. The Super Readers have various reading-related powers and the characters constantly ask the viewer to participate and help figure things out.

The first time I put it on, one of the characters was trying to sound out a word and asked "Hmmm... what letter makes the sound 'rrrrrrrrrrr'?"  Allie shouted "R!"  I turned and looked at her wondering how she knew such a thing.  The character then asked "What letter makes the sound 'uuuuuuuu'?'"  Allie shouted "U!"  I'm totally impressed at this point.  Lastly, "What letter makes the sound 'nnnnnnnn'?'"  Allie: "N!"

Then the character helps put all the sounds together to form "run".  Allie participated with all the sounding out and was so proud when she figured it out.

I knew that Allie spends a lot of her time at school working on letters and assorted pre-reading skills, but it was so cool to see her demonstrate a skill that I never would have thought she had.  We do a lot of letter identification and thinking of words that start with certain letters, but I don't think I ever asked her what letter makes a sound.  I am so happy she's in a good daycare/preschool that pushes her in ways that I wouldn't think to.

Jonathan and I had the meeting with the early intervention program leads this morning to determine if Allie is eligible to continue receiving OT, PT, and Speech Therapy through the county.  We want to continue with the program and have her therapists more involved in her school life because, after almost 2.5 years of their help at home, we feel pretty comfortable encouraging Allie on our own.  There are other options too: she can go to a specialty preschool that focuses on specific needs or she can be dropped from the program because she's too high functioning.  We love her current preschool so much that we didn't want to move her and we feared that she may get dropped entirely from the program because she scored pretty well on her tests.

After a nerve-racking 15 minutes of explanation of what the meeting was for, we gave a brief explanation of some of the challenges that Allie has and she was deemed eligible for continued OT, PT, and Speech based on a documented delay in her articulation and an underlying medical condition that impacts fine and gross motor.

So, Allie gets to stay with her friends and continue to receive early intervention services.  Success!

Saturday, January 25, 2014

Sledding

Allie had her first ever sledding day today.  She was very excited, and maybe a little cold.


She really liked being pulled on the sled.



But then came time to go down the hill... it was scary.  In case you can't totally see her face, she screaming in terror the entire, very slow trip down the hill.




After the tears stopped, she stared at us like "how dare you do that to me" and she refused to get on the sled again.


The only thing that made it better was getting to push Daddy down the hill.

Monday, January 20, 2014

"Me too!!! My turn!!!"

Allie is getting so brave that she hardly seems like the same girl she was a few months ago.  She's out of school today for MLK day so we did a drop in class at a local kid's gym and she loved it.  She was jumping on trampolines, jumping into a giant ball pit, walking the balance beam, doing flips on the uneven bars (with assistance), doing sit ups and stretches, and swinging with both hands from suspended rings (again with some assistance).  She even climbed up a ladder all by herself to go down a slide and did all of the dance moves with both hands.

She was so excited to do all the things that the other kids were doing and, for the most part, she did.  I was worried that she would be hesitant to do the gymnastics routines but she jumped right up, yelled "Me too!!! My turn!!!" and gave it her best shot.  I was so proud.  My favorite was when she walked across the balance beam, did a "stork stand" where she lifted one leg so she was balancing on just her left leg, then jumped off the beam and ran over to me for a hug yelling "I did it!!!"

I told the teachers about Allie's right sided weakness and they were open to helping in any way they needed to, but it was cool that she didn't need that much help.  I swear the class was like a joint OT/PT session disguised as playtime.

After the hour-long class, she was still amped up so we went to the McDonald's next door to the gym (convenient placement, I tell you) and Allie climbed and jumped in the play place for another hour.  Other kids came and went and Allie made lots of friends.

At one point, a 6 year old girl was in the play equipment with her 2 year old brother.  The girl had all sorts of wisdom to impart upon the two year old and Allie found it hilarious.  She started repeating all of the girl's instructions like she was practicing for when she has a little sibling to boss around.  From the looks of it, Allie will fill her new role nicely.

Friday, January 10, 2014

Allie the Fibber

As Allie is talking more and more, she is coming out with some pretty crazy things.  Most of them are funny, but some of them are outright lies.

When I pick her up from school I ask about her friends and she tells me hilarious things that they did that day.  Every day she tells me how her friend Max went down the slide and bumped his knee or got his pasta all over himself at lunch.  A few weeks ago I mentioned Max to Jonathan and he informed me that Max left the school in NOVEMBER.  Allie has been making up stuff every day about someone who wasn't even there for months.  

This morning, Allie was showing off her jumping skills when she was getting dressed.  We were very impressed and that's when she informed us that he other friend at school jumped so high that she banged her head on the ceiling and needed ice.  Really, Allie?

The teenage years are going to be fun.   

Thursday, January 9, 2014

A new stroke theory

I had an ultrasound for the new baby today and what was supposed to be our first meeting with our new high-risk OB.  (I'm considered high-risk because of Allie's stroke and will be followed by both the high-risk and my regular OB throughout this pregnancy.)  When we got into the ultrasound room the technician apologized that the doctor would not be able to meet with us today because four of his patients were admitted to the hospital last night and he's there with them.

The ultrasound went great and all of the results from the baby's genetic testing were good.  So far, the new baby is in good health and it was fun to watch him/her squirm around trying to get away from the prodding ultrasound wand.  I remember watching Allie doing the same!

A couple hours after the appointment, the doctor called to apologize for not being there in person and to talk a little about Allie.  His first point of discussion was Allie's cord knot.  He was shocked that Allie survived it.  He said that they only see those types of the knots in cases of "fetal demise" and said it was "miraculous" that Allie was born alive.  (See a description of the cord knot here and and our regular OB's shock at the cord knot here.)

Next, we moved on to the stroke.  He said that he looked through Allie's ultrasounds from when she was in utero and there was no indication that anything happened.  He also looked through all of my blood work and noted that all the clotting disorder tests looked fine.  We knew all this but its always nice to get another opinion.
Cerebral arterial supply to the brain 

He said that he has a suspicion that the stroke and the cord knot are related.  I asked how this could be since her stoke looks like it was from a clot because the damage is localized around the middle cerebral artery as as opposed to a lack of oxygen that usually does uniform damage to the whole brain.  I had read about cord knots resulting in oxygen deprivation but never anything localized.

He said it could be that Allie had a structural vascular abnormality in her brain that made it difficult to get blood through or around her middle cerebral artery and increased pressure from the cord knot exacerbated it.  He compared it to hitting a big pot hole in your car when you have a tire with low air pressure.  Neither one would cause huge damage on their own but when you put them together, the result can be catastrophic.

This is all just a theory but it is very different from anything we've heard before.

In terms of the new baby:

  • I'm on an 81mg aspirin until I'm 6 weeks postpartum (I've been taking this since we decided to try for another baby, so nothing new here);
  • I will be followed closely by the high-risk OB throughout the whole pregnancy (there was some question about if the high-risk doctor would just piggy back on the regular OB who would do all the visits and ultrasounds);
  • The high-risk OB will do all of my ultrasounds to make sure nothing looks fishy; and
  • I will be induced for a C-section at 39 weeks pregnant (he said risks for complications increase exponentially beyond 40 weeks... Allie was born at 41).    

I have another ultrasound and meeting with the high-risk OB next month, where we will get a better look at the growing baby and find out if its a boy or girl.  I'm excited to tell Allie if she'll have a brother or sister.  She's holding strong to her Peter name choice, so we shall see.

Sunday, January 5, 2014

Swim Class

Playing in her tent with her friend

Allie had a great friend-filled weekend and had her first swim class in months.  She has taken swim classes before but we took a some time off during our last constraint therapy session and then kept missing the enrollment dates for the classes since then.  

We were late again signing up for this class so we got stuck with a teacher that we had before and thought was too pushy.  To try to make the most of the class today, Jonathan spoke with the teacher ahead of the lesson and explained that Allie has cerebral palsy and has a hard time doing some of the moves.  The teacher looked at Allie and said "I understand.  My son has right-sided hemiparesis"---exactly what Allie has!  She then went on to say how great swim class is and that she would do her best to be encouraging but not too pushy.  

I was a little worried that Allie would freak out about getting back in the pool after such a long break.  But, to prove me wrong, she did wonderfully and this ended up being the best swim class she's ever had.

Friday, January 3, 2014

"When Blowing Kisses is a Monumental Feat"


Allie's KKI story got posted!  


I already posted the text (here) but it is great to see it active with some of the photos from our trip to the aquarium.

Also check out the other inspiring kids that are featured with Allie: 

Their stories make me tear up; I'm so proud of them!


Big Sister

Babies come with chocolate, right?!?

I'm happy to announce that Allie is going to be a big sister this July.  So far, she is very excited about it.
 
When we told her, she immediately declared she wanted a brother named Peter.  A few weeks later, she decided she wanted a friend from her class as her brother.  Now, she waffles a little; sometimes she wants a brother and sometimes a sister.

Either way, I'm sure she will be wonderful with him/her.

Thursday, January 2, 2014

Happy New Year!

Allie has had a busy December.

We all went to Costa Rica for a week with Jonathan's family.  It was so much fun and Allie loved every moment of it.

She loved the airplane rides...



and she loved playing on the beach and making "big cupcakes".



We went on a river cruise and a bunch of monkeys came on the boat to say hi.  Allie loved it.   These are some photos from after the cruise.



But most of all, Allie loved spending so much time with the family.