Strawberry

1/25/12

The Diagnosis

I have been trying to write this post for a few weeks now. Every time I go to write, I can't do it. I just have to get it over with and write.

Ailyn was diagnosed with Cerebral Palsy. I knew this was possible and I am the one who was pushing for a diagnoses. But, even with knowing when I heard the doctors words telling me she has cerebral palsy, it hurt. It hurt because I hate that Ailyn has to fight for everything. I hate that now she will have to fight all her life. I hate that our life is full of therapies and doctor appointments.

After a few weeks of worry and stress about the future, I can finally say I am ready to talk it out. Ailyn is such a happy kid, always smiling. Just seeing her loving life despite her handicap makes me realize she will be OK.

We don't know what type of CP she has. She falls under a few of them actually. The most affected is her balance. Although, it's getting better with more therapy she still can't balance on her own for more than 15 seconds. She has some low tone in her trunk and some high tone in her ankles. The" good" thing about CP is it will never get worse. Her issues today are what she will always have. With therapy she can learn how to control herself.

As far as walking, she is not yet. BUT, SHE TOOK TWO STEPS yesterday!!! I was so happy to see this. It means she CAN do it and WILL. With all Ailyn's milestones she has to learn to coordinate herself. Her movements look so unorganized until she learns the milestone. Once she gets the movement down, her brain remembers it and she has no problems. Not sure if I explained that so you could understand..... you have to see Ailyn to "get it".

With the CP diagnose we were able to get more speech. So she gets speech twice a week. She is still very much speech delayed. And, uses signs to communicate over words. She has about 10 words and over 20 signs.

Feeding is still a huge issue. In the past week she has been doing very well and even had a good weight check. I had her reevaluated with the feeding program. I'm hoping the CP diagnose will help insurance cover more of the feeding clinic. We are also waiting to have an evaluation with an OT feeding therapist.

I'm trying to be positive about all of this. I know she is getting all the help she can right now. Our schedule is jammed pack every day. I see improvement with all her therapies so this helps to keeps me positive.

THANK YOU for all your support. It means so much to me!

1/23/12

pretzel making!

Ailyn loves going to Miss Sally's class.

Today we made pretzels

Ailyn really liked making them! She couldn't wait for her turn to mix.

"A" for Ailyn!

I was excited for her to try a bite

She sat in her chair during this whole project!

She loved the prezel and cried when I took it away!

STAY TUNED FOR AILYN'S MEDICAL UPDATE

1/7/12

Happy 7th Camden!!!

Camden turned 7 today! He woke up expecting the house to be decorated. Because last year I had the dining room decked out for a birthday dinner. He looked very bummed out. Until I told him he had a gift. We bought him a Kindle Fire. He LOVES it.

I told Camden we can do anything he wanted on his birthday. He chose to go to the aquarium. I had a sitter lined up to watch Ailyn for the day. But, Camden said "It's my wish to have Ailyn with us" So we took the high maintenance little nugget with us. Who by the way LOVED every minute of the aquarium.

It was late in the day so the place was not crowded. We could take our time at each exhibit. The only thing we missed was the dolphin show going so late.

The weather was amazing today! Driving into the city the temp was 67 degrees!!!

We ate at Phillips Seafood. Besides Ailyn crawling on the table and almost knocking my wine over 6 times, we enjoyed our meal.

Happy Birthday Camden!!! I can't wait for your party next weekend!!!

12/26/11

Our December

I can't believe it's been a month since I have updated! We have been busy with the holidays and doctor appointments. NO "me" time to sit and write. As I write this, Ailyn is trying to feed me a Hershey kiss. I have a lot of medical updates for Ailyn but will make another blog post on that. For now, I will fill you in our crazy busy month!

Meet "Ollie" our newest addition to our family. We adopted Ollie from Target. He spent the entire month doing fun things for the kids to see each morning. Ollie reported back to Santa each night on Camden and Ailyn's behavior. Camden fell in love with Ollie from day one and was very sad to see him go.

Ailyn had her Christmas party at school. Art projects are always "fun" with Ailyn. Most ends up on the floor or in her mouth. I am not even sure if she enjoys doing it but we try every time.

This year we started a tradition with our friends. A night of making reindeer food and watching Christmas movies. This year we had Elf playing. The kids enjoyed this project so much! I know I will look forword to this every year!

The kids were in the pageant again this year. Camden goes to Sunday school every Sunday and was looking foreword to this all month! It was very cute. My "angels" looked very sweet.

On Christmas Eve we said goodbye to Ollie. Camden was hesitant to touch him at first since the rule is you are NOT allowed to touch. The elf will lose his magic if touched!! Camden took this very serious. One time Ailyn knocked him over. So Camden wrote a letter apologizing. Ollie came back the next day with a broken leg and was on a heart monitor (LOVED having Ailyn's NICU stuff) but he didn't lose his magic.

Ailyn has no clue about Ollie, did not grasp the concept at all. Maybe next year ;)

The boys always follow Santa on NORAD.

Before bed we had to feed the reindeer!

And, put our cookies and milk for Santa!

Ollie must have told Santa how good they have been!! They both sat looking at their gifts for a few minutes before asking to tear them open.

Ailyn opened every one this year all by herself. She even threw away each piece of wrapping paper before signing "more" for the next gift. My girl for sure ;)

Camden loved all his gifts! We love watching him get so excited to open each one.

My Mom made Ailyn's favorite babies knitted clothes!!! They are adorable!! A favorite gift for sure! Ailyn's babies always had to be naked.... no more! She loves having me dress them up.

Camden has organized his toys every year since 2 years old!!! Ailyn tried knocking them all down and thought that was a very fun game. Big brother did not think that was a fun game.

To end our night we had good friends over to exchange gifts. The kids had a blast with each other and we enjoyed some wine and Chinese food.

MERRY CHRISTMAS AND HAPPY HANUKKAH TO ALL!!!!!

11/17/11

Go Team Ailyn!

We felt the love today!!! To say I was overwhelmed by the love and support you all gave us would be an understatement. All day long I was receiving texts and tagged posts on Facebook. It was an awesome feeling to know my Ailyn is so loved by so many. THANK YOU ALL SO MUCH for wearing purple for Prematurity Awareness Day!