Tuesday, February 24, 2009

In case you missed it on the evening news...

AnnaKate is WALKING!!!

She has been walking great with one hand held and even with us only holding her clothes but today she was able to walk between Billy and me. She will go about 4-7 steps. When she gets to us she squeals with delight and gives a huge hug. She definitely knows what she is doing and is so proud! And by the way...so are we!!
She still has a ways to go before she is truly walking independently, but today is a big day!

*I wish I was able to get a better video but it is hard to catch the moment when you are trying to catch her! :)

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Saturday, February 14, 2009

34 month update

This week AnnaKate was 34 months old. I do not age her in months anymore but 34 months seemed significant. She is 2 months away from being 3! Wow! We have also said that we have had a baby for a whole longer than most and now AnnaKate really does not seem like a baby.

AnnaKate had her public preschool assessment this week as well. She will stay at the Meyer Center but we still needed to do the public school assessment. My RTS friends know how hard assessments can be. You know...your child can't talk, walk or go to the potty?? BUT...today was different. They were so impressed with AnnaKate. She worked so hard and exceeded their expectations. They specifically commented on her adorable out-going personality, independence, problem solving skills and concentration. I was so proud! Billy and I have always said that no matter what AnnaKate's cognitive skills are, we wanted her to be independent and well mannered. So instead of leaving the assessment feeling yucky, I was on top of the world! We still have to go for the results of her assessment and I am fully prepared for the facts, but their kind words are much more important!

So it seemed fitting that I give an update. My RTS friends don't get to see AnnaKate so I want to give a snapshot of where she is right now. So this is very detailed...so if you know AnnaKate well you do not have to read. :) If I ever create that special needs baby book, it will have a page for 34 months!!

Height- 32 inches
Weight- 27 pounds
She is pretty small and does not appear to be 3. She wears 18-24 months clothes and a size 4 shoe.

Feeding: AnnaKate had lots of difficulties early on with eating and drinking. She has severe reflux and I suspect she had some swallowing difficulties when she was young. She probably threw up a million times in her first year. But she never had a feeding tube. She had a very limited diet due to textural and chewing issues up until her tonsillectomy. Now she eats lots of different things but meat still does not interest her. She drink from a straw sippy cup and we just started working more with an open top cup.

Medicines: AnnaKate is on is Prevacid. Her reflux does not seems to be getting any better. She still regurgitates a lot. She also takes Miralax daily for constipation.

Motor Skills: AnnaKate crawled at 18 months. She is so close to walking but seems to lack the confidence. She can walk while barely holding to your hand. She gets around the house with push and riding toys.
She is doing really well in the area of fine motor skills. Her deviated thumbs do not cause her any problems. She can pick up the smallest items with a modified pincher grasp. There is lots of discussion about having RTS kids thumbs fixed. They are not a problem for AnnaKate so we are not concerned at this point. We will revisit it for cosmetic reasons when she is older.

Problem Solving skills: AnnaKate surprises me everyday with her cognitive skills. She is amazing with puzzles! She loves them and has the best concentration. I guess she is a "therapized" baby because she will attend to task so well. She knows when it is time to work.

Communication: AnnaKate does not talk. She has a few sounds m, b, d, tongue clicking and babbling. She signs yes, all done, more and eat. She understands more signs than she makes. She will crawl to the high chair to let us know she wants to eat and go to the refrigerator if she wants to drink. She will also go to the pantry to get her own food (there is that independence!) She uses pictures as well to communicate. Her receptive language is great. We can give her commands and she will do them. She is also very attentive to when we tell her no. She has just recently started to point more at things other than pictures in books, like things in the sky.

Likes and dislikes: AnnaKate is a lover! She loves to hug and kiss. She does so some favoritism to special people. Her favorite toys are books and this wacky pink ball (see pictures). She also likes musical instruments and stacking toys.

Enjoy these recent pictures!

AnnaKate really likes to play ball. She can throw and roll the back to you.

AnnaKate is very inquisitive. This is her going in to my storage basket!

She loves looking at pictures of people she knows. She can identify lots of people.

Here it is...pink ball!! We call is nasty ball because it feels gross and attracts dirt and dust.

AnnaKate going in to the pantry to get food!!

AnnaKate and her dad have fun playing with a remote control car up and down the hall

This mirror is one of her favorite things...or maybe it is the little girl in the mirror she loves so much!

She has recently become very interested in doors. She tries to open them and knocks on them.

AnnaKate also loves to string beads. She is very good at it!

Climbing stairs...a great past time!

Playing by herself...she is good about that!

Loving on her Lou-Lou! She can't ever get enough!

What a big girl!! Can you believe that she will be 3 soon?

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Tuesday, February 10, 2009

Welcome to Holland

Many people know about the beautiful poem by Emily Perl Kingsley called Welcome to Holland. If you have not ever read it, please take the time to read it.

Welcome to Holland
Emily Perl Kingsley
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.

I had the best treat arrive in the mail last week. A dear college friend sent me this fabulous print called Welcome to Holland. If that was not sweet enough, listen to the story behind the painting.

The artist, Logan Welborn, was five years old when her mother, Michelle, read Welcome to Holland to her. Her sister Lilly, who is diagnosed with Dravet Syndrome, had been in the hospital every 2-3 weeks for four months when Logan asked her mother, "Are we members here?"- meaning are we members of the hospital. Michelle read this to Logan to explain that Lilly was different and had special needs. Logan understood and replied, "So when you had me you went to Italy and when you had Lilly you went to Holland?" This understanding helped Logan appreciate and accept the differences her sister had compared to other babies.

Logan painted "Welcome to Holland" at age six with her art teacher. This painting has helped to raise money for the International Dravet Syndrome Epilepsy Action League.

Thanks Jen! Your gift meant more to than you will ever know. Each day I walk by this picture, I am reminded of Holland's beautiful tulips and windmills. I LOVE Holland!

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