I haven't posted an Ailyn update in a very long time. It's way overdue! There is a lot to tell. I will start by saying "SHE IS THREE!!!" How the heck did 3 years fly by that fast!!
Ailyn continues to challenge us every minute of the day. Stubborn, determined, happy, naughty, and sweet are just some words to describe her. She works harder than any child I know. She is eager to learn new signs, words and anything you throw at her.
I always get asked "Is she always this happy?" YES! She really loves life and doesn't let her disabilities bother her. Ailyn wants to be just like any other 3 year old and tries hard to do what her peers are doing.
One of Ailyn's biggest struggles is speech. The poor kid knows what she wants but can't get it out. She has about 30 signs. Some are approximations and some she made up herself. It's really fun when she makes up a sign and it takes you weeks to get it. I get hit, scratched and pinched on a daily basis. Instead of getting mad..... and it's realllly hard not to get mad.... I calmly ask her to what she wants. Most times she will point or try to tell me. For example, last night she wanted to ride on her friends little tractor. I turned to walk in the house, so she gauged my eye out and left a nice black and blue under my eye. I figured out pretty quickly what she wanted and had her try to tell me. It's the most frustrating thing!!! I want to help her but I also don't want to get beaten up!
Right now we have speech twice a week. One at home and one at the children's hospital. She does very well and tries new sounds. She is learning how to label things. Every time we drive by a balloon, I hear "OOON!" or she will ask me "OOL?" which means she wants to go swimming. For the most part she will sign a word or point. It seems very hard for her to get a word out. The reason?? We are guessing it's the cerebral palsy. She may have some low tone around her face that is affecting her speech. So with speech therapy and practice, she should be able to overcome this.....I hope.
Today we got a communication device. It has "cells" and within each cell are frequently used words. Help, want, no, all done, ect. She is supposed to hit the word that she wants to say. This is a little above Ailyn right now. But, she understands it. It's just another thing to our growing list of things she needs. I'm trying to be positive about it and hopefully it can help her.
Ailyn's other biggest struggle is her gross motor skills. She tries SO hard!! It's really hard for me to see. Just today I watched her try to stand up on her own, pick Camden's sword up just to fall back. It didn't stop her from trying to do it another 3 times. All she wanted to do was be able to stand and swing the sword. Something we take for granite. It comes so easy for "typical" kids.
Ailyn has physical therapy twice a week also. At home and at the children's hospital. Therapy at the children's hospital is no joke. Rejani works Ailyn VERY hard. She doesn't let Ailyn give her excuses. It's funny. Ailyn asks Rejani to go potty (she signs) every week. The funny part is we are not actively potty training, it's an excuse to stop PT. She has take 4 steps on her own there!
Yeah, about those braces.... you know the ones she is supposed to wear 6 hours a day? I am very lucky if I can get 2 hours. She refuses to move in them. Just like the eye patch paralyzed her. She whines the entire time they are on. I am honest with her doctor and admit she doesn't wear them like she should. The doctor (the best doctor ever, that is moving away!!!) gave me stretches to do with Ailyn's feet. And, we just broke down and ordered a pair of "hatchbacks" shoes to wear with the braces. A whopping $73.50!!!!!!
The diagnoses of Cerebral Palsy is still a hard subject for me. I don't exactly know why. I can't bring myself to read about it yet. I am learning as I go right now. I want Ailyn to teach me what she can do and not what the books say she should do. It's hard to explain how CP affects Ailyn. Her balance is way off, she is "tight" in her arms and legs. If you were to play "Pat a Cake" with her, it would seem as if she was fighting against you moving her arms.
You have to do everything for Ailyn. Put her in a chair, take her out, walk her to a toy, carry her up and down steps. Since she is still tiny, it's easy right now. And, because she is tiny, it's hard to remember to try to make her try these tasks. It's much easier to pick her up.
The AWESOME news though is since her eye surgery, Ailyn wants to be upright!! She LOVES to stroll her babies around, she even has been using her walker and trying to stand on her own much more. In the past few days she has been asking me to put her down and hold her hands to walk (my back aches at the end of the day). I have been bringing her walker to all her appointments. I am really excited to see what happens in the next few months.
I try not to get upset she can't walk. I try to remember how very far she has come and that we are lucky she is even doing what she is doing. But....it's hard. I know she wants to walk like everyone else, I see it in her eyes. I hope the day comes soon.
EYES- AWESOME! THRILLED! THE BEST THING WE HAVE DONE FOR HER!
About 3 weeks post surgery, we started noticing huge changes. Her balance was better (although not much better), her perception is right on. She doesn't turn her head to the side to use her good eye anymore. She can stack a block like no other. She watches TV! She has become quite the TV junkie. And, with saying that I mean, she will sit still for 15-20 minutes watching the same Sesame Street clip over and over. In the morning I can now shower ALONE without Ailyn opening the doors and throwing her toys in with me. I can turn on Sesame Street! She asks to go to bed just so she can watch TV before bed. She laughs at the jokes. She gets it! She can SEE it!
And! Her eyes look amazing.
SCHOOL- Sadly our 2 & U year is ending next week. We had an awesome little class. We made some great friends and got to see old friends every week. Ailyn loved it. She did very well. Sat for circle time, half listened to story time, followed directions and did her artwork.
Ailyn was tested through the county for Child Find. A free service through the state. Child Find will be with us through the school years. They will provide her a preschool and therapy in school.
Cognitively Ailyn is right up there with her peers. She tested just below a typical child. With her speech and gross motor delays this was not a surprise. But, I was actually happy to see how well she tested. I know she is smart and knows more than she can express, but someone seeing her for the first time or for a hour here and there, you won't see it.
And, that brings me to my biggest worry. The thing that has been keeping me up at nights. Stressing me out everyday. Making me cry. Giving me headaches that last days....you get the point.
I fear for Ailyn's future. I fear for her starting preschool next year. Putting her in a classroom with teachers who don't know her. Not being able to attend her therapy sessions. Having other people do MY job. I'll be honest. I don't trust many people with Ailyn. I know I have to let this go. But, at 3 years old? She is a baby!
We went to visit a school that has a 5 and 5 program. 5 typical peers with 5 delayed children. The delayed children might have speech delay, autism or whatever. I think Ailyn would do awesome in a class like this. She feeds off her typical peers. I am just not thrilled with a 5 day program. Her therapists all think this is best for Ailyn. They say the consistency will be good for her.
I'm not ready to let her go off into this cruel world. I don't want those dreaded IEP meetings that I don't understand one thing about. I don't want to fight for what she needs. I don't want to read the laws...
We have the option to extend her Infant and Toddler program until 4 (or 5, I can't remember). It hasn't been that easy to say "Let's just extend it". Her therapists don't agree and think she should start school. It's my choice in the end.
So this is where I am. I am not ready to let go of Ailyn. I like overseeing all her therapies. I like spending the time with Ailyn. I like that I can cancel therapy and go to the Zoo all day. She's 3! Not 5!
Ailyn just started another preschool through the county. It's once a week and will go through the summer. If I decide to keep her home next year, she will be able to go to this preschool.
FEEDING- Ailyn still gets fed via Gtube 10 hours a night. I have since decreased this on my own. With insurance denying to pay $11,000 of a feeding day program, I am on my own. Her GI is great but doesn't help you wean off a feeding tube.
So one day a week, Ailyn does feeding with an OT at the children's hospital (and if you are keeping up, yes that is three days a week at the hospital!) Jeff, her therapist is great. He knows to cover his self head to toe so he doesn't wear Ailyn's food. Jeff is really good with her and Ailyn responds well to him.
She is eating a lot more table food now. Her favorite being mac and cheese and hot dogs. BUT, you can't give them to her together. She wants ONE food at a time. Last night my friend made an awesome Phillopino meal and Ailyn LOVED it!! When we eat out, we have to order Ailyn a meal now.
I'm excited that she might be able to gain weight with food and not icky Pediasure (ever smell dry Pediasure??)
Our week is insane. Or should I say "Ailyn's week is insane" Forget planning anything for me! I try my hardest to keep Camden busy so he doesn't feel over shadowed.
Everyday we have a therapy and some days we have 2. There have been days we have to add a 3rd. It leaves little time for playdates and fun stuff. But, she is progressing so well with each therapy. I know it's the best thing for her right now.
I feel overwhelmed. I love my life, I love my husband, I love my babies. I am generally happy but overwhelmed. I know this is the life I was given. I have to make the best of it. It's not what I would have chosen but I wouldn't trade it for the world.
I worry about Ailyn on a daily basis. I watch her try to stand and fall. She laughs, I cry. I want things to come easier for her. I want everyone to see Ailyn the way she is and not see her disabilities. But, for now the best I can do is vent here and share our amazing Strawberry with the world. We are so proud of her.
