Great news and a video!

 

September seems to be Ailyn's month! Awesome milestones are being hit! 

 

I'll start with the best!! Ailyn is really starting to walk better. She can take 20 sturdy steps without falling!!! Last week in PT, she walked the entire hallway (with breaks)! Her steps are a lot different. Smaller and steady. Her doctor watched her walk and said "She's going to be a walker soon!" I walked out of the room all teary and proud. I wanted to tell everyone! I am so proud of how very hard Ailyn works in PT.

 

Ailyn's speech is starting to get better too. She is saying more words. I asked her "Who loves you?" and she pointed to her chest and said "ME"! Turns out she has been reading a book in school that says "ME". She is also trying harder in speech therapy too. I think seeing her school friends talking is really motivating her.

 

Ailyn is doing well in school. She did have a few naughty moments at the end of the week. Her teacher told us "We have to look past the cuteness". She won them over with her adorableness and now they are catching on to her. She comes home so tired and has been naughty at home. But, I'm hoping once she gets used to a 5 day week, she will do better.

 

The video below shows her new smaller steps. My camera shut off on me so I didn't get all her steps. ENJOY!

 

 

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To Our NICU nurses

 

Happy NICU nurse day!!!!!

 

Even though it's been 3 1/2 years since our NICU stay, a day doesn't go by that we are not thankful to all of you. You all have a special place in our hearts. Ailyn will grow up knowing all you did to save her life. Thank you for all you do!!

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Preschool!!

 

As most know, I had so much anxiety over sending Ailyn to school. I was afraid to send her off into the real world. Not being able to shelter her and be there for her every minute of the day was going to be tough for me. I knew she would thrive in school. She is so social and loves to be around people. So I let my baby grow some wings and head off into this huge world 5 half days a week.

 

 

 

Ailyn has an IEP. She will recieve OT, PT and speech during class. They focused more on speech and she will get it 3 times a week. She only gets PT once but I'm hoping we can add one more day in the future. Ailyn shares an assistant/aid with one other child. Kristen is AWESOME!!! So full of life, so positive, I really like her. I can tell Ailyn adores her with the huge smile she gives her each morning.

 

There are 12 kids in her class. With 6 of them being "typical peers". This will be SO good for Ailyn. Ailyn has always had adults as her best friends. Her daily therapist coming to our house. She prefers to play with adults over peers. I'm hoping she will learn to make friends. Even if she just plays WITH a classmate, I will be happy. 

 

Ailyn giggles when we get to the stop light by her school. She gives me many kisses (OK, I ask for them) and she blows kisses as I am walking away. She looks so old to me as she walks off with her class.

 

On the first day I watched as she walked down the long BIG hallway to her classroom. I was so proud of her. I thought back to the day she was born. We had no idea if she was going to make it. And, here we are 3 1/2 (and a half!!!!) years later, she's off to preschool. I was able to peel myself away from the window and let her go.

 

When I pick her up, she tries to tell me about her day. She will sign that she sat on the potty, washed her hands, ate snack, drank her juice and read a book.

 

Ailyn still has therapy at the children's hospital 3 days a week. She will get a hour nap inbetween. By 7pm she is begging to go to bed. She never begs to go to bed that early.

 

I look forward to seeing her bloom this year.

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Second grade woes

 

A week before school started, Camden started begging me to homeschool him. He still remembers the year we homeschooled well. He had some valid points but right now is not the time. I can barely keep up with doctor appointments and therapy! I figured he would just adjust quickly like always after a few days.

 

Wrong. Camden has turned into this kid we don't even know. He "hates" school. On the 3rd day of school, Aaron came to me and said Camden was laying on the couch sick. Now, I am an expert at knowing a faker! But, Camden had me fooled. No clue how he got his eyes to look so dark and tired. I kept him home because last year he told me he was sick and I wasn't believeing but then he threw up all afternoon. But, this time he was faking. I gave him the old "you are not allowed to fake sick, Mommy and Daddy can go to jail lecture. He must have had ear plugs in because he tried it again. This time I told him he was going to school sick or not. He threw the biggest tantrum EVER. SO not Camden!!!

 

He comes home telling me all his new friends names. His classmates flocked to him when I brought him in late from a doctors appointment. He is well liked. He says no one is being mean to him. He does his work well and has no problems.  He just "hates" school. So after a 2 weeks of this, I asked his teacher for her email. I plan on writing her and asking if she is noticing anything during class.

 

I'm afraid the poor kid got my anxiety. He loves to be home. He loved being home everyday for two years with Ailyn. But, he's also very social and loves to be around people.

 

I'm hoping he can get over what ever it is. I don't like seeing him so upset. And, this new tantrum thing.....yeah NO....not having it!

 

 

 

Ailyn on the other hand is LOVING school! A post coming soon!

 

 

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Goodbye tonsils!

Ailyn had her tonsils out on Monday the 13th. The surgery went well. The ENT said her tonsils were HUGE. Her adneiods grew back some so they removed them again. And, replaced her ear tubes.

The ENT told me this was going to be a rough recovery. She wanted to keep Ailyn overnight since she was a micropreemie. She also said there was no rush with discharging her since she has no gtube. We were concerned she wouldn't drink enough......and we were right. She flat out refused to take sips of anything (even Pepsi!!)

(a beautiful angel our friend gave Ailyn to watch over her)

Ailyn spent 4 days. On the 4th day, she finally would take fluids by a syringe. Camden was able to visit. Ailyn was so cute when Camden came in the room. She was so excited. Camden wanted to see in her mouth, and Ailyn opened up for him. Daddy was able to visit for a few hours a day, and she loved that too.

Our stay wasn't too bad at all. We were in the new hospital. It almost felt like a hotel. But, you quickly remembered it was hospital when a nurse would walk in every hour for vitals. The rooms were so spacious. The views were amazing! The playrooms were bright and cheery.

When we were getting discharged the nurse said "Sometimes kids do better recovering at home". She was SO right! When we got home, she got a long hot bath, some pain meds and her favorite chair. She then asked for a bottle. She drank 3 ounces!! After that I knew she was going to be OK.

It's been 8 days. Ailyn is still so sore. She still gets pain medicine every 4 hours. If she sleeps past her dose time, she screams in pain. She continues to drink her Pediasure awesome! She drank 33 ounces one day! But, averages about 24 ounces. No food yet..... we offer all day long.

It's been a long 8 days. But, the ENT said give it a good 16 days. (16?!!) And, so far, she's right. it's taking that long.  As long as she is drinking Pediasure throughout the day, I am not worried about weight loss.

Thanks for all the thoughts and prayers!!! And, a HUGE thank you to our friends who helped watch Camden so we could be with Ailyn the entire time.

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OH Happy Day!!!

Since the first day of summer, Camden has worn a big heavy cast. In the first few weeks, he was bummed. He thought his summer was ruined. But, after those few weeks, I had to tell him to stop running around and doing crazy boy things.

He never complained of pain. He refused pain medicine after a few days. If that were me, I would have been  in bed, on pain meds, for a week! Kids tolerance amaze me.

He would find various objects to put down his cast to itch. The only time he complained about itching was around bedtime. A ploy to stay up maybe?

If you ask Camden what the worst part of this cast experience would be the surgery. He didn't like that "you had to go to sleep". 

And, just for fun, I asked him what his favorite part of having a cast on was. He said "What do you mean??". 

Camden was VERY shy when strangers would ask how he broke his arm. We had our niece, Malia here for a month. She would do all the talking for him. It was very cute. 

He was very proud to have everyone sign his cast. I thought he would ask more but I think he was too shy to ask. 

I swear I feed this skinny thing! The massive cast makes him look even smaller. It was over 90 degrees on this day. He had to take his shirt off. I can't imagine what that cast felt like on the hottest days of the summer. He never complained! You could just see it in his face. His bright red flushed face ;)

Froggy held up pretty well too. We did have one emergency. Auntie and Uncle's puppy tried to chew his cast off. Thank goodness I walked in when I did.

Camden has been more clingy with me since the day he broke his arm. He's always been a cuddler, but lately he needs me more. And, I don't mind. I know it won't last forever so I am savoring every cuddle and cry for me!

OH HAPPY DAY!!!! He got his cast off!!!! 

The pins hurt when they came out. And, his arm was very sore for a few days. He couldn't bend his elbow for a awhile. He has to wear a splint for 4 more weeks. But, can take it off to bathe and swim. The first time he went swimming in a pool with a friend, he came home and slept 14 hours!!!!!

We are hoping to start PT this week. NO MORE broken bones please! That was NOT fun!

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The Good and the Bad

 

This summer has been full of good and bad for us. Some overwhelming and some amazing!

I'll start with some good....or so we hope!  We spent a week in Cape May, NJ a couple weeks ago. Ailyn and I were in the bedroom getting ready for the day. I happen to look on the floor and what do I see?? Ailyn's feeding tube!! I had another, quickly opened the box and tried to get the new one, and one back in. There was no way. I have no clue how long the tube had been out. I changed her diaper a hour before. 

The gtube at this point would have to be surgically put back in. I was told the hole closes very fast, it sure does! Ailyn eats 3 small meals a day and drinks up to 24-30 ounces of Pediasure. I was already starting to wean her feedings down. I called the GI and we agreed she was OK until we got home. 

Since then, the GI and I have decided to KEEP THE TUBE OUT!!! Ailyn is ready. I might be ready. 

Ailyn has had more word explosions! "mine", "that", "go,go" (is a car), "off", "O" (Obie, the dog) and "pool"

The bad news? It's bad. And, very scary. Ailyn is having seizures. I have a couple on video for her neurologist. She had an EEG last week. But, that was a joke. Ailyn doesn't stay still in her sleep, no clue how they think she was going to lay there for 30 minutes. 

She started getting these body spasms about 3 months ago. She finds somewhere comfortable, then her whole body tenses up, she drools a little. Very normal for someone with Cerebral Palsy. If they get to the point where she is uncomfortable, she can starts a medication to help relieve the muscle pain. 

Then about 4 weeks ago she started rolling her eyes in the back of her head while she has a spasm. She snaps out of it right away. We have an appointment very soon. Please say some prayers for A. 

We are starting to say goodbye to her Infant and Toddler therapists. Some of been with Ailyn since she was 3 months and 4 pounds!! They have watched her amazing progress over 3 years. Have been her best friends 4 times a week. I am not ready for this change! 

Ailyn will be starting school soon. Her first IEP meeting is next week. I am only going to agree to 3 days a week. I have MANY anxieties about her starting school. 

WANT the BEST news??? Ailyn has been taking 10-20 steady independent steps!!!!!!!! Crawling is still her preferred method. It's easier and faster..... of course we are trying hard to change her mind.

She tolerates her braces better now. I don't get 6 hours yet, but she doesn't cry the entire time they are on. She is so much steadier with them on and I wish she would just stop being stubborn (Ok, no I don't) and wear them! She takes steps without them just as good too.

Ailyn's ears have been a HUGE issue ALL summer. I think we only had 2 weeks off of an infection. We clear up one ear, then it moves to the other. I put drops in everyday. The last day on vacation, she was screaming, clawing at her one ear, making the outside bleed. We are assuming that tube fell out. The doctor wasn't able to see either tubes because they were all infected. I wasn't too concerned because Ailyn was to have surgery on Tuesday, August 7th to check her tubes and take her tonsils out.........

BUT!!! Of course, she woke the day before with a fever and a bad cough. Thank goodness we were able to reschedule for Monday August 13th. She will stay overnight. Please say prayers!!

Despite the bad news, we are having a great summer. Trying to get out as much as we can on weekends. Our week at the beach was AMAZING! Very relaxing. Look for pics soon!

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