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11/10/11

Fitted for leg braces


Today Ailyn was finally fitted for her leg braces (AFO'S)


Have I ever told you how hard is it to keep Ailyn still for 1 minute??? So just imagine 1 hour in a chair! She threw every toy handed to her. Forget trying to keep her glasses on. Toys became dangerous objects.  The only thing that helped was her favorite Iphone app.


I never thought I would be this excited about leg braces. Even though I have to admit I freaked when I saw they go all the way up the leg. I must have misunderstood when she explained them to me. But, the thought of the braces helping Ailyn walk made me relax. It's temporary..... just like the feeding tube.... right??


There were so many choices to design the braces. I was overwhelmed and wish Ailyn could choose her own style! I think I did well.


Having her stay still to form the cast was the hardest part but overall I think she did very well. She had no clue what we were doing to her. All she cared about was getting out of the chair.


I showed Ailyn my pick and asked if she like it. She shook her head "NO" but I took it as a yes and went with it regardless. She says "NO" to most things.


I didn't wait for the phone to focus before I snapped this pic of Ailyn and her PT. But, I love it and decided to share it to have it forever. It's the memory not the clarity, right?

The braces will take 2 weeks to come in. I know they will help our Strawberry. I'm excited to see her try to walk with them. And, hopefully...just hopefully I can have a blog entry with Ailyn's first steps. I am teary thinking about it.
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11/5/11

Together again


Today we got together with some of our oldest friends.


The kids really enjoy each other and we love to sit and watch them interact. Even if two of them get in trouble together.


Even though there has been some space in time that we have spent together, you would never know. I love that.


I love that we have history together way before kids and now having kids close in age to grow up together.


I love how much we love each others children like they are, are own.


We can sit back and relax, drink some wine and reminisce over old memories. And, we have some great memories together.


It's great to have great friends that deep down even if you go through tough times, they will always be there for you. Today was a great day with our oldest friends.


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11/2/11

Where we have been


Where did October go?? We started out the month taking a quick trip "home". We took the kids to the circus. SO FUN! Camden and Logan went right home and made their own circus.


Camden read to PopPop and Nana for the first time. Camden is doing very well with reading.


We all got our Philomena snuggles. Such a happy easy going baby.


We got home and went to Ailyn's field trip at the Zoo. I enjoy these girls each week. I am going to miss them so much when the class is over!!!!


Ailyn enjoyed the Zoo. She wanted to hold all the animals.


The Zoo wore Ailyn OUT!


We got back in touch with some good friends.


Camden had a Halloween themed sleepover with his buddy Connor.


We live for the weekends. It's our only time we can spend as a family these days. We took a long Sunday drive to a pumpkin patch.


Ailyn feared the hay ride and was praying that it would be over soon.


She ended up having a great time.


Big brother was such a helper. Since Ailyn can't walk yet, he wanted to pull her in the wagon.



Ailyn has finally been wanting to use her push toys!!! It's so awesome seeing her UP and trying to walk. She has PT twice a week now and it's really helping her out so much.


Ailyn is getting bigger! Her GI was thrilled with her weight this month! She was almost 23 pounds and is 32 1/2 inches.


Another family day. I am going to miss being able to get outside!!!


Camden has been doing great in school. He seems to really enjoy it.


Notice one shoe off?? She always takes off just one....


Ailyn is a great multi tasker....she gets that from her Mommy ;)


Ugh...the glasses.... that is a whole other post to come. Above is Sandy, her teacher from Infant and Toddlers. She came to see Ailyn at Two and You.


Ailyn still doesn't play with other kids, but enjoys parallel play.


This year Camden was a white Ninja. He took this role very serious.


Ailyn was a bumblebee. A very cute bumblebee I must say!

I have missed blogging! I always have ideas for posts and never have time to sit down and write. I have not picked up my camera much. I miss taking pictures! I have kept up with my 365 blog, so check it out!

THANK YOU to all who have asked where we have been since I haven't blogged! We are fine, healthy....just super busy!!!




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9/23/11

PT Friday


Every Friday Ailyn has two physical therapy sessions. She is loving the PT at the Children's Hospital. I think she likes being around so many people. She loves the attention she gets there. Her PT works her very hard over a hour. No word on the AFO's (ankle braces). We are waiting for paperwork to go through.

** I took that bottle away right way...no spraying was going to happen today**

Next is PT at our house with Miss Stacey. We have had Stacey come since Ailyn was 4 months old. All our therapists have become family. They are in our home once and sometimes twice weekly. They are Ailyn's best friends. Stacey works Ailyn hard as well. Since we are home for this session, Ailyn will often turn to jello when asked to "walk". We have to get creative to keep her mind on the session. Having PT twice has really worked out for the best. Ailyn is all stretched out and seems to do much better with her gross motor.


Our day got even busier when I got a call that her glasses came in (after 2 days!). When she first put on her glasses, she looked around and smiled. Looked at herself in the mirror and clapped. I got all teary. I could tell she could see better. I can recall the day I drove home with my glasses on. Everything was so vivid. I cried knowing that was the feeling Ailyn was having.


When we got home I sat her in her chair and took out books. She kept the glasses on for a full 10 minutes. She looked at books and smiled. She would look up at me and smile. I could tell the room looked different to her. Just watching her look around, then back at me was so neat. My heart melted! The rest of the night we put them on a few more times. We are going to make it a very positive experience for her. If we tell her NOT to take them off....she will know that will get us mad and she will do it (over and over). I have to be one step ahead of her.

Ailyn's vision therapist will be coming over to help out. Ailyn is stubborn. This will not be easy to keep them on. I told myself I am not going to stress over this. If we get her to wear them for 10 minutes a day....good. We will work our way up as slowly as need be.

But, how adorable does she look????
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9/19/11

Updates and Ailyn facts


Our weeks have been so busy. Ailyn's schedule is packed with school, gym class, therapy and doctor appointments. Camden is busy with karate 3-4 times a week and well.... I just go along. I do find time to go on girls night out or a Target run alone. Going away for a weekend has been our savor. Our past trip was to a old fishing town. One of our favorite places to go. It's quiet and very relaxed down there. It's only 3 hours away but it feels like you are much further.


Ailyn has had many new appointments with lots of new updates. The second opinion at a new eye doctor went great. We really like this new doctor and switched over to him. He wants Ailyn to wear glasses for 2 months and come back late October. Then we will start eye drops to blur the good eye and make the weak eye work harder. We have not bought the glasses yet. I have a lot of anxiety about these glasses. Ailyn WILL rip them off her face every second. Even if she can see better. Her vision therapist is going to help with keeping her glasses on. I wished her lots of luck and hope that she doesn't want to quit her job after. I have been to the eye doctor to try glasses on and OMG she looks adorable!


Since Ailyn wasn't walking at 2. I decided to get her more PT through the local pediatric hospital. We have had 2 sessions so far. Ailyn will be fitted for AFO's (ankle braces) as soon as the doctor writes the script and insurance goes through. Her balance has always been way off. She struggles to pull to a stand still. I had thought it might have been her eye sight.... then I thought it might be the fluid in her ears. Even after ear tubes, her balance is off. We have always noticed Ailyn's feet leaning in when she stands. Her PT's said that most likely that would resolve itself when she walked. But, since she has been cruising for a year with no progress on walking..... it's time for braces. Ailyn does not have Cerebral Palsy. She might be able to be classified as having CP for insurance purposes but it wouldn't be your classic CP. It's more the Spastic CP.  We want her casted for the braces today! I think this will do Ailyn a lot of good with stability.


Ailyn has started to see a behavioral therapist at the Children's hospital. We have only been once but I really like it. It has already taught me how to deal with Ailyn's behavior. My days are very long. Ailyn will wear you out. She gets in trouble every minute of the day. She will scratch, pinch, hit, bite or pull your hair. She is not being mean. She is smiling when she does it ;) Most likely and hopefully it all has to do with no communication skills. The therapist was very impressed with Ailyn. She said she is a very bright child. Ailyn learned the sign for cracker in 5 minutes and has used it since. She knows what she is doing....she knows she is being naughty.....she thinks she is so so funny when she throws the cat food all over the kitchen floor or sprays her Pediasure all over the house. She loves any attention. She looks for me to get mad and say "NO". I ignore the bad behaviors and pretend I could care less. Inside I am counting down the hours until Daddy comes home so I can hide in a hole and scream. I can go on and on about her behaviors but I would need to drink a few glasses of wine to get through it.


Speaking of behavior. Ailyn's developmental pediatrician said Ailyn is showing ALL the signs for ADHD. She had said this before at her 1 year visit so it wasn't a shock. The doctor said she is "a very big handful and makes me tired just watching her". I was actually happy to hear that statement! It made me feel like I wasn't going crazy and that my child is really a handful! Ailyn's attention span is much less that what a average 2 year old should be. She can not focus on a task without flipping out and wanting to move onto something else. As you can imagine this makes her therapists jobs very hard. They are prepared each week with many toys and games to switch to every 2 seconds. Ailyn can sit and play dolls and she does focus on what SHE likes to do. Medicine is an option at 3 years old. I was against ADD meds for Camden at 4 1/2 but I really believe Ailyn may need something to calm her down so she can focus and learn a task. I am sure many will question a diagnoses of ADHD at 2 years old. I challenge you to a day with Ailyn to change your mind ;)





Ailyn started a Two & You class with me. I did the class with Camden and loved it. It was great to be back at the school. They were all so supportive when Ailyn was in the NICU. They all love seeing Ailyn "all grown up" and starting school! I have to admit, I was so worried about this class. I was worried she was too far behind. I was worried she would beat her classmates up. But, I have changed my way of thinking and am SO happy I didn't back out. She is doing great. She keeps up with her class of boys! She plays well, shares sometimes, paints one stroke on a paper, sits and semi listens to a book, LOVES snack time and the playground. I think this class will be so good for her. And, her teacher, Miss Sally is awesome!


Even after being the trouble maker she is, Ailyn can be so sweet too! And, funny! She loves to make you laugh. She loves to hold the guinea pigs and is actually very gentle with them. Her brother is still the funniest ever. Her face lights up when we pull up to the school to pick him up. She makes up for trouble with kisses and hugs.



Ailyn knows about 9 signs and 8 words. She doesn't label anything yet but knows what everything is. She follows directions very well. She tries hard to communicate. She gets very excited when you answer one of her signs or understand what she asked.


Ailyn will NOT keep shoes on.....don't even try. She will take them off every time you turn around. She thinks she is very funny when she throws the shoe.



When you count 1,2,3 to get her to stop doing what she is doing.... she will stop what she is doing and hold up her fingers and count along.


She loves the deer that are outside our house a lot of the day. She knows the sign for "deer" and will crawl to the door to watch them. She wants to hold every animal she sees. At the pet store she got upset that I told her she couldn't hold the mice.


Ailyn could care less about TV, never has watched 2 minutes of a show. But, when ICarly's theme song comes on, she will look up at the TV and dance. She will make sure I know it's on so I sing along to it.




The poor cat. Rage is 15 years old. He can't jump to get his food. Ailyn will hunt his food bowl down. If it's the dry food, she will take a few bites and throw the whole bowl across the kitchen floor. I step on morsels all day long. Do you know ants love cat food?? Camden caught her eating wet food the other day......just like her Auntie Bridget. I texted Bridget and she said she was proud ;)


If she gets a hold of your cell phone she will throw it as far as she can.... or if you are her babysitter, she will chuck it off the dock...... yeah, we have to buy the sitter a new phone.



It's never a dull day at my house.



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