Meet Tessa

The app Instagram has become a huge support system for me. Who would have thought an app where you upload pictures would be a social site? I follow many kids with CP along with a few adults that have CP. I can actually call them "friends". I have emailed with some, become Facebook friends and sent medical supplies to another. Our CP circle grows all the time. It's so nice seeing others who are going through the same challenges. I don't feel so alone.

I "met" Tessa's Mom on Instagram. I saw a picture of Tessa trying to walk on her own at therapy. She reminded me very much of my Ailyn. Blonde hair and all. Tessa is 4 years old. I have had many phone conversations with her Mom. She has been a great source of information for me. I hope one day we can get our miracle babies together!  Here is Tessa's amazing story!

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Why we walk

It's that time of the year again! This will be our fourth year walking for the March Of Dimes! We always welcome new walkers, so if you are interested let me know. The walk is on April 22nd in Harford County.

I'll be honest, I thought about not doing the walk this year. My life is crazy. My days are filled to the max. I had guilt over the thought. In the end I realized I was being selfish. I could find the time to help raise awareness to something that has deeply affected my family. I am proud to share Ailyn and her story. I want the world to know how awesome she is. So here's to bright sunny skies on April 21st!!! (please)

March Of Dimes helps fund research that find answers to the problems that threaten our babies. For me the March Of Dimes helped get the 17P shot (hydroxyprogesterone caproate injection) It's a synthetic form of a hormone produced during pregnancy.  During both of my pregnancies a nurse would come out to my house at week 16 to give me the weekly shot. It's the first ever drug known to prevent some preterm births. 

I know what your thinking.... "She had two preterm births, how could this shot have helped?"

For some reason my body would start preterm labor very early. 18 weeks with Camden and 14 with Ailyn. I would be contracting throughout the day, then get the 17P shot and my uterus would calm down almost immediately. I looked forward to those shots! So yes, I had to early babies, but I truly believe the shot held off preterm labor as long as it could. 

In the next few weeks I will be doing posts on how prematurity has affected my family. I will also be doing posts on some of our amazing preemie friends!

I have not figured how to put the March Of Dimes badge on here. For now here is the link to donate. A donation of $10 goes a long way!  

http://www.marchforbabies.org/personal_page.asp?pp=3582980&ct=4&w=6093942&u=StrawberryAilyn

THANK YOU to all who have donated this year already!!!!!

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Leprechaun fun

Last year our leprechaun traps were a huge hit. Camden would bring it up several times about how we didn't catch him. He wanted to make sure we caught him this year!

Ailyn is always a challenge with any art project. She changes her mind every 2 seconds on what she wants to do. Then if your not paying attention to her, things go flying across the room. 

Cash was a big "help". He was so funny. He would take what Camden had in his hands and run. I think he tried eating 5 popsicle sticks. Between him and Ailyn I was wondering why I do this to myself.

Camden's imagination is so great. He has so much fun talking about what he would do if  he caught the leprechaun. The best was he was going to make him show us his pot of gold. I was all for that! 

And, then Ailyn got paint on her hands. It was all over for her. She sat and cried. No matter how many times I wiped her hands. Lately, she has this OCD thing going on. It's a whole other blog post coming soon! Poor thing couldn't calm herself down and decided she was done.

Cash finally fell asleep and Cam and I had some peace. 

Camden planned on staying up all night. He had a plastic bag all ready to put this leprechaun in. He lasted till 12:00AM. 

We didn't catch him. But, that didn't get Camden down. He ran up to my room early morning to tell me that he left M&M's and peed green again. 

I'm glad we started this tradition. It's fun to see their imaginations run wild! Camden is already planning next years trap.

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Paper towel lovey

Growing up I had a blanket I named "blankey". It had the best silk on it for thumb sucking. I carried my blankey everywhere. My Grandmother would try and throw it away, my my Mom always saved it from the trash bin. It was well loved. Then one day the Easter bunny took it away forever. I got blankey back when I was an adult. It now sits in a bin in my closet. 

Ailyn's "blankey" is much different. She loves wet paper towels. This started when she was very young, around 1 years old. I remember the first few times I gave her one. She sat for over an hour playing with one. 

Over the years her obsession has gotten worse. She will ask for a paper towel a few times a day. There is a ritual with it. She sits very content. It calms her down when she's overstimulated. If she is having a bad day, hand her a paper towel. If she is crying, hand her a paper towel. 

Ailyn will chew it, then take it out of her mouth and roll it over and over. She does the same thing over and  over.

This freaks most people out. I have to tell everyone she will not swallow or choke on it. I'm sure some think it's dangerous. But, honestly, it keeps her quiet and still for more than 10 minutes. I like that she found something to calm herself down. Ailyn never stops. Her mind is always working in fast forward mode. 

(don't mind the booger, she's sick....again)

I wanted to blog about it so I remember this habit forever. I'm hoping she will move on to something else self soothing and not chew paper towels at 10 years old. I can recall laying on the couch with my blanket, thumb in my mouth. It was a calming feeling. 

Cash is loving this habit too. It's been a struggle keeping him away from Ailyn. He will steal it right from her hands. Pooping out paper towels is not easy for Cash. He is getting better, but it's still an issue. 

So when Ailyn rubs her hands together that means she would like you to wet a paper towel. It's nice being able to throw it away and get a new one each time. Less germs!

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This month flew by

February was a very busy month for us. Lots of fun stuff. I'll start with the biggest news. I started watching my friends 3 boys full time. It will be nice to have some extra money for Ailyn's therapies. The boys are 4, 3 and 6 months. It's going great. We have a great routine. It's been great for Ailyn to be around the boys and vise versa. They are the cutest in the car. Ailyn has a Sesame Street CD. They all "sing" along and do the hand motions. The boys are also speech delayed. They can all learn from each other. It's fun to see Ailyn learn new things from them. 

Aaron's sister Aimee and family came to visit for a week. We had so much fun! Ailyn LOVED her baby cousin, Gavin. Both of my kids sucked up all the attention Uncle and Auntie gave them. 

Ailyn loves playdoh and will sit for a hour and play. She was very excited when Auntie Aimee bought her 10 packs of playdoh and playdoh tools! She was also very happy that Uncle sat and played with her.

It was so nice to see Gavin. Last time we saw him he was still a tiny baby. It's so hard living far away from our nieces and nephews. But, I think both of our families are very good about making sure the kids know each other well. And, when they get together they are best of friends.

We had plans to go to the Zoo. It's half off the expensive price of $20 a ticket until April. But, when we got there it was closed!! Who knew to check their Facebook page before going?? They ended up being at the hospital that Ailyn does therapy! So we made the best of the 68 degree day. We walked around the Harbor.  

We made Cash some "Happy 12 weeks" doggy treats. 

It was sad to see them go home. With our crazy busy weeks, it was nice to slow down and enjoy family.

Our good friend turned 4!!!  The kids all had a blast at the bouncy house. Cousin Taylor even got to go.

 Our friend Harry invited us to his Valentine party. His Mommy put together an amazing lunch. The homemade heart shaped pizza was fab! Ailyn loved the heart shaped pasta. We went home with lots of goodies including chocolate covered strawberries! Thank you for inviting us!

I went to Ailyn's Valentine's Day party at her school. I watched as she walked....yes walked around the mat with her classmates. It was awesome to see. She looked so happy. She has missed a lot of school this year from being sick. She has caught every cold. And, with all her doctor appointments she has not been to school for a full week. I'm seriously thinking of homeschooling her next year. I want to focus on her Apraxia of speech. School at this point just gets in the way. Yes, it's awesome for her. She is learning a lot. But, I can do the same at home and be less stressed about missing school days. I wish I listened to my gut feeling when I didn't want to send her this year. The program is AWESOME! The teachers and aides are great. But, it's preschool..... 

Valentine's Day was fun. I made a family favorite, chicken roast. Everyone wrote down 5 things they liked about each family member. Then we read it during dinner. The kids and Cash got some goodies. I love Valentine's Day. It's a reminder of how very lucky I am to have an awesome husband and two great kids. Oh and of course a good puppy! 

talking to Nanna.....

Camden is very big into Michael Jackson right now.

A month can't go by without some bad news. Camden and Ailyn were wrestling over my lap one night. Camden's knee went into Ailyn's front teeth. It bled a little and she screamed for a good 10 minutes. But, after that she was fine. I did notice her mouth was sore when I  brushed her teeth but didn't think much of it. A few weeks went by and she bit down on a cookie (in her defense, this cookie was very hard) and screamed in pain. She cried so hard for a long time. Then it hit me....she hadn't been eating much at all and was refusing Pediasure in her bottle. Her teeth hurt and she couldn't tell us :(  I took her to the dentist the next day for an X-ray. There are no roots to her front teeth and they were loose. The dentist wants to take them out. 

We had the procedure scheduled but canceled it. Ailyn's doctor denied any Valium like medicine before the procedure. The dentist said that Ailyn would not understand how to do the gas mask. So we decided to do it in a hospital. Which means a lot of $$$$. It's been almost 2 weeks, her teeth are still loose. She is back to eating much better. For now we will wait, take it day by day. If we see her in pain, we will take them out right away. But, I don't want to rush it. She has hard enough time in speech class!

Cash is now a 30 pound puppy! He's all puppy that's for sure. He fits in with us perfectly. Cash is very attached to all of us. Always by our feet. If Ailyn is playing on the floor, he is right there with his chew toy...or trying to steal her toy. He loves to sit in your lap and chew a bone. It's so funny watching him try to sit on Ailyn's lap! Camden and Cash have a very playful relationship. Cash will "attack" Camden and ask him to play. They run around the house like nuts. Camden loves to crawl up next to him when he is sleeping. Ailyn's job is to feed him. She gets very upset if you try and feed him yourself. It's HER job only. 

Morning time is my time with Cash. He knows when I come home from dropping Ailyn off that it's time to sit and relax. He will bark at me until I sit on the chair. Then he jumps up and sleeps behind me. Sometimes he lays his head on me. I can go into all the naughty things he does but that would take too long.... I'll just keep it positive. We are loving having a dog in the house.

Aaron and I got away for the first time in 2 years! It was so nice to be alone together. We stayed out until 3am both nights and slept in very late. I have lots of pics for a blog post on our trip.

I can't believe we are going into March already! Time to start raising money for the March of Dimes again! The walk is April 21st. If anyone wants to walk with us please do!!!! 

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Speech issues

Imagine you had tape over your mouth for a day. Think about how you could tell people what you need or want without words.  That is how Ailyn lives her life daily. She has many signs, some made up, some approximations. I understand more than anyone else since I am with her all day. But, this is becoming a huge issue for Ailyn.

If you know Ailyn, you know she "gets it". You know that she understands everything you are saying to her. She has a way of making people understand what she wants/needs. But, gets frustrated that she can't speak words. She has words and those words are pretty clear. 

Ailyn gets speech 4x a week. I sit through one of her therapies. She does very well and tries very hard. She has progressed. But, something is off. I think it's more than a speech delay. She has never been diagnosed with anything and I think it's time to look further into it. I have always thought she has speech apraxia.

Speech apraxia- Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.

So where do we go from here?? I have NO clue! I talked with a father at the hospital yesterday. I mentioned how well his daughter talked. She has CP too, and you can tell she has a delay and tries hard to talk. He told  me about apraxia. The little girl is in private speech lessons called "prompt". NOT covered with insurance (of course). He gave me the name of a grant I can get for therapy. So I have somewhere to start. I was told the hospital we go to does not have the training for apraxia. Awesome..... so that may be why she hasn't been diagnosed.

Ailyn will throw everything in sight if she wants to say something and can't. If you are nearby, you will get something thrown at your head. It's hard to reprimand her for being so frustrated. I get why she is throwing stuff or hitting us. But, we can't tolerate it. So it's very hard to get through our days. I am sad for her. I can't imagine not being able to say what I want. I want to fix it for her. 

If you can help direct me in any way that would be awesome. Or how I can help her at home. Thanks in advance!!!

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