Friday, December 30, 2011

Allie pulled up to standing!

Allie was feeling a little rambunctious when Jonathan and I picked her up from daycare. She was laughing hysterically as we dramatically swerved her stroller around on the way home. We usually try to cram a bunch of exercise in when she is this happy because she thinks we are just playing with her. We started with tummy time and she rolled over from her tummy to her back a few times. Then, she held herself in a one-handed (Righty) plank off of my lap as she played with a light-up music board with her left hand. An abbreviated game of "let's go get it!" followed where we put a toy off to her right and she puts her weight on Righty to lean over and grab the toy with her left hand.

Then came the sit-to-stands. She starts on a little Allie-sized bench and works on building leg muscles by sitting on the bench and repeatedly standing up and sitting down. Either Jonathan or I usually sit directly behind her helping support her. Tonight, we put her toy walker that has a nice handle bar in front of her when she was sitting on the bench. Without hesitation, she reached up to the bar with her left hand and pulled herself right up. She continues to amaze me!

An update on the constraint therapy: Allie gets her formal evaluation on Tuesday. We were told that this will be a several hour event where they will do lots of tests to see where she is at physically and do different measurements of her limbs and hands. Assuming they don't find her to be unsuitable for therapy (which I doubt she will be), she starts the program on Thursday!

In other news, the head-shaping helmet is working out great. It finally fits properly and we are starting to see a little more roundness in the back of Allie's head.

Daddy and Me swim class starts next weekend. I'm excited to be the observer in this activity.

And, Allie's therapy schedule is getting adjusted so that her PT and OT through the Children's Hospital will be on different days. She currently has both sessions on the same day and the picture to the left is what she looks like after them.

What you can't easily tell is that she is vertical, wrapped in my sweater (which I am also wearing) in 40 degree weather while we wait for a bus to go home. I think separate sessions will help her not be so exhausted during the latter session and hopefully help her get more out of the whole experience.

Thursday, December 22, 2011

Merry Christmas From Allie

We flew into Minneapolis today and Allie is loving it! She slept takeoff to landing, got to visit Santa, and then played with her cousins Noah and Elliot.

Turns out, Allie LOVES Santa. All the other babies were screaming but she thought his beard was just too cool. I'm impressed because this Santa was particularly creepy.


Monday, December 19, 2011

Constraint Therapy and General Updates

Constraint Therapy

We found out the other day that Allie will be starting constraint therapy in January! We will be going to the Kennedy Kreiger Institute (KKI) in Baltimore. KKI typically works with kids over 2 years old, so Allie will be the youngest patient that they have ever had. The research seems to indicate that the sooner kids get this therapy, the better the outcome. We are excited!

Because Allie is so young, she will be doing a modified program. She will have a temporary arm splint instead of a 24/7 cast on her strong arm. The goal is to encourage Allie to try to use her weaker arm to build muscle and create more neural connections to her right side.

The therapy will start with one hour a day and hopefully work up to two hours, if Allie obliges. The only down side of this is that we have to drive to and from Baltimore everyday. Baltimore is about an hour away from our home. I talked to my boss today about adjusting my already half-time work schedule so that I can take her to KKI everyday. He was incredibly supportive and told me that it is something that we have to do. I love it there. Jonathan is also working from home on Fridays and will take Allie to therapy then so that I can get one full day of work in per week.


Another In Utero Stroke Kid

Allie does supplemental PT and OT at the Children's Hospital. The other day, a mom introduced herself to me to say that she overheard me talking to the therapist and her 19-month old son had an in utero stroke too. He was amazing. He was running around, playing with toys with both hands, and looking like an average kid. I know that it has taken him a lot of work to get to where he is, but it gave me a lot of hope.


Other Developments

  • About a week ago, Allie was playing on the ground surrounded by toys. Out of nowhere, she reached out with Righty, grabbed her pacifer with Righty, and brought it to her midline (the imaginary line of symmetry that runs up and down your body). I was very impressed so I gathered all of her toys, put them in her little toy box, and placed the box to the right of her. She reached over with Righty, grabbed onto the side of the box with Righty, and pulled the box close to her so that she could pilfer it with Lefty.

  • As part of Allie's PT regiment, she does baby push ups. I sit upright with my legs extended straight in front of me. Allie will lay perpendicular to me on my legs and do a plank position off of me. Allie can now hold this position for about 10 seconds, which is possibly longer than I could hold a similar position.

  • Tummy time is going well. Last night, Allie got both knees all the way under her. Today during OT, she stayed in the crawling position with little assistance for a few seconds.

  • Her Children's Hospital OT has started using kinesio tape on Allie's right hand and arm to help keep her thumb open and to help her rotate her wrist. This week was the first time we did this and it seemed to really help. This morning, Allie was sitting in her high chair with her right arm totally loose. Righty was relaxed with her palm partially exposed and pressed against her seat, making a nearly 90 degree angle from her forearm. As recently as a few weeks ago, her wrist was tight and difficult to get her to move. Now, she's loose and has her hand open.

  • Bonnie sent me an interesting article today about a type of constraint therapy that is being done in MN: http://www.startribune.com/business/135765123.html

How We Have Been Feeling

Jonathan and I have been trying to stay as optimistic as possible about everything Allie related. But, honestly, it is really hard. It is tough watching her struggle to do things that other kids can do easily. It is heartbreaking to do therapies with her that make her cry when all we want to do is play. It is difficult for us to really believe that this is what we have to do and that everything with Allie isn't perfect.

Bonnie passed this along today and it really hit the nail on the head for us.













Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Emily Perl Kingsley 1987

Saturday, December 3, 2011

Best... Tummy Time... Ever!

Allie was having some before bed playtime on her stomach tonight and she surprised us with a new trick. Tummy time is an everyday thing but somedays she likes it more than others. Tonight, she liked it a lot.

Jonathan and I were on the ground singing to her and she was pretty happy with it. All of the sudden, she started lifting up her butt by tucking her knees under her body. She tucked both knees under and was able to get her pelvis at least a couple inches off the ground. She's on her way to crawling! This was the first time she did anything like this.

Unfortunately, we didn't get a picture but here is a picture of Allie not enjoying her tummy time at PT last week.

Friday, December 2, 2011

Back in the Swing of Things


It has been a busy couple of weeks.

We went to the Bay Area for Thanksgiving to visit my family. Allie was a lap baby but we got lucky on the way there and she got her own seat. We weren't so lucky on the way back and she got a bit fussy, but that's OK. She got some good family time in.

Allie's therapy routine is getting changed up. She has started to do supplemental PT and OT through Children's National Hospital. We had her first PT session this week and Allie really liked the therapist. Allie will also be starting Special Instruction (known as SPIN) probably next week. SPIN is like a precursor to speech therapy because kids don't usually start working with a speech pathologist until they are about 2 years old. So far, Allie is not showing any substantial delays in speech but many kids with in utero strokes have speech issues. SPIN is a playful way of addressing any issues that might crop up.

We are also considering an intensive therapy in Baltimore called constraint therapy. Allie would have a cast put over her left arm so that she has to use her weaker right arm. Here is a cool video of a young girl who did a similar program in Birmingham, Alabama.

http://www.onetruemedia.com/otm_site/view_shared?p=b00f76e28c43e4a0c665e2

The Baltimore program is with the Kennedy Kreiger Institute. They have done a preliminary insurance evaluation and it looks like our insurance will cover the otherwise very expensive therapy. We found out that our insurance plan covers 100% of habilitative services, which means that they will cover absolutely anything that is "medically necessary" for Allie since her stroke happened before she was born. Allie is currently on the waiting list with Kennedy Kreiger and will be going in for an evaluation within the next 2 weeks. Allie's new OT has a now-18 month old patient who recently did the Kennedy Kreiger program and the she was overwhelming impressed at the progress that kid was able to make.

Here is some information about the Kennedy Kreiger program, if you're interested.

http://www.kennedykrieger.org/patient-care/patient-care-programs/outpatient-programs/constraint-induced-and-bimanual-therapy