Strabismus Surgery

We went to the eye doctor last Friday to do a follow up. He dilated her eyes last visit and noticed they turned in a lot so he wanted to see us back and look at her eyes without being dilated to see if they still turned in as much. He noticed them both turning in quite a bit. Normally when you only have one eye that turns in, you can patch the good eye so the brain is forced to use the bad eye. If you do not use both eyes equally, the brain will discontinue function of the bad eye. Since both eyes turn in, we are unable to do patching. He wants to do surgery to move the muscle back on the eye so that she can no longer cross her eyes even if she wanted to.

 

He said that most kids who are developmentally delayed have this problem. With Oaklynn it is due to her Rett syndrome. Because she can not tell her body what to do, she can not tell her eyes to not cross. She doesn't have the best eye site but that isn't something that glasses can fix, it's because she crosses them so often without wanting to and can't see straight.

The surgery is called "Strabismus Surgery" (http://www.eyecareforchildren.com/strabismus.html). We have it scheduled for August 2nd. We will see the doctor 2 weeks before the surgery and again 2 weeks after. There is a 20% chance it will not work for her on the first try so he may need to go back in months or even years after and try again.

A little worried as this is her first surgery. She has had anesthesia before to get an MRI of her brain so at least I know she shouldn't have a reaction to that. Just praying it all goes well with her eyes and nothing goes wrong.

Sounds

Oaklynn was asked by her Speech Therapist this morning if she wanted to sing or play. Oaklynn took a minute and said, "sssss". She has NEVER made the "s" sound until today. YAY. Our little girl LOVES her music. She is doing so much better recently when it comes to trying to speak.
She is having a harder time getting around a moving but doing so much better when you give her options. Now when you ask her, "Where is dada?" She will look right at him. She has never responded by looking at the person so quickly. She is now understanding that she can communicate with us through eye gaze and that we can understand her.

. . . . . . I am one PROUD mama . . . . . .

Hi Dad...

This morning I was in the bathroom getting ready to take Oaklynn to the eye doctor and I asked Austin to check on Oaklynn. He walked into the front room and said, "Hi Oaklynn". Oaklynn responded right back with, "Hi da". 

She is doing so good and getting some words out. The words that we have heard now are bubble, ya, mama, dada, papa, ba (ball) and now hi ! This is the fist time we have noticed her putting two words together . . .

 GO OAKLYNN

BUBBLE

I never thought that the word bubble would bring tears of joy to my eyes.

Today I sat down with Oaklynn and blew bubbles. I would say bubble each time I blew them and she would giggle and smile.

Out of no where she said, "bubble". I was in shock and kind of in denial that I just hear her say bubble. I thought there was no way she could have just said that. I kept blowing bubbles and saying bubble to her. Again, she said, "bubble". I then started crying realizing that she did just repeat me and say bubble!!

Austin came home from school right after the second time she said bubble and asked why I was crying. I told him Oaklynn said bubble and he said, "wow". I don't think he believed me or he did but his reaction was my first reaction, denial (there is no way she could have done that). Just then Oaklynn repeated me and said, "bubble". Daddy got to hear that I wasn't crazy and she really was saying bubble!!

I then grabbed my phone and started recording. Of course when you start to record something, they never do it again for you. I sat on the floor with her for about another 15 minutes, holding my phone up and recording video after video, just waiting for it to happen again. I actually caught her saying bubble on video. This is the 4th time she said bubble. It isn't as clear as the rest but since she was just saying it, we could tell that she was trying to say bubble again...

I love how hard she tries. Just goes to show that Oaklynn is all there. She understands everything, just trapped in her little body and trying so hard to get out. I love you sweet girl!

Regression

Oaklynn has been regressing recently. She is having a hard time crawling. She has been sitting in the "W" position. She does this because it's a "lazy" way of sitting. She doesn't have to use any core strength or anything when sitting in this position. She also doesn't roll over her right side. When she is sitting and falls back,  if there is something on her left that is blocking her from rolling over onto her tummy, she just cries until you come get her. She wont roll over her right side to get up.

(This is the "W" position)

I talked to her PT today about it and we are taking a step back and going to start working on crawling again. Because she is sitting in "W" position so often, her hips are very tight since she isn't working them out by crawling anymore. So now that her hips are tight, she doesn't want to crawl because it doesn't feel good. So now we work on loosening her hips and trying to get her to crawl again.

I had an emotional break down a couple days ago where I just cried for hours. It is one of the hardest things to watch your child slowly disappear each day. I know she is still the same person but she is getting trapped inside her body more and more. She is no longer pulling to stand, can't focus enough to put food in her mouth, when you ask her to grab something, you have to wait even longer for her to be able to do it (if she can), she isn't crawling, and many more things.

I sit and watch my little girl try SO HARD to do what seems like the easiest task for a typical developing child her age. I see the determination and frustration in her eyes as she tries to tell her hand to grab a toy. It seems like she is having to think harder and harder about doing things now. Remember those "Seizure" videos I posted on here a while back (click on "Seizure" to watch the video if you haven't seen it yet)? Well I figure out that those aren't seizures. She does that when she is being over stimulated or when she is being pushed hard to do something. When doing PT, she would always start to do that because the PT would push her to work hard. Or when she is in public places and there are a lot of people or a lot going on. Now she does that when you ask her to do something small. Her brain is getting more and more clogged with dead brain cells that the signal her brain is sending out to get her body to move is getting more and more un clear. She is now doing this when working with any therapist.

I love my daughter so much and I would give ANYTHING (and I do mean ANYTHING) to get her to be able to experience life the way she deserves to. It is so difficult to watch her disappear and see her personality get trapped further and further inside her body. She is such a sweet little girl. You just have to have patience and understanding to know that she loves you and she wants to show you but can't.

HAPPY BIRTHDAY

Happy Birthday to a little girl who has forever changed my life. You taught me what life is all about and helped me to be a better person. I love you more than words can express.

Here are some of my favorite pictures/videos over the last 2 years.

 (Newborn pictures done by Stephanie Moore Studios)

(First time swimming)

(She lost her hair on both sides. She had an awesome mohawk)

 (Loves looking at herself in the mirror)

 

(Volume isn't working but I am smacking my lips together to make a noise and she is trying to copy me, LOL. She can no longer imitate what you do.)

(6 moth photo shoot by Stephanie Moore Studios)

(holding your own bottle!!)

(waving for the first time (She can no longer do this). It's about 48 seconds into the video)

(Loves to swing)

(Easter family picture)

(Helping daddy set up his birthday gift)

(Helping mom do the dishes)

(Signing "more"(She can no longer do this).  It's about 16 seconds into the video)

(Loved to eat!)

(Constantly collecting socks to stick in her mouth and suck on)

(Our energy efficient baby)

(Flexible little girl, lol)

(STANDING!!)

(LOVES her Mickey Mouse. So sad the volume isn't working. She is screaming in this video until the second I turn on Mickey Mouse, she looks at the TV and stops.)

 (Halloween)

(First, and only time falling asleep while eating)

(Feeding herself with mom's help. So proud)

(Our little ham!)

(Just chillin')

And here are pictures from her birthday party...

(Most the birthday pictures were taken by Stephanie Moore Studios)

 (Her FAVORITE song is "3 little monkeys swinging in a tree". So I had to get a cake made about that song)

 (Mommy helping her blow her candles)

 (Singing happy birthday)

 (Crying tears of joy. She was SO happy while we were singing to her. Everyone wanted to sing again and again because she was so happy.)

 (We let her feed herself cake. None got to her mouth but I'm sure she had fun playing with it.)

 (Frosting mohawk!)

 (Taking her braces off so she could attack her cake)

We will find a cure and enjoy MANY more birthday's to come. Happy Birthday sweet Oaklynn!!

Mama...

I sat with Oaklynn in the rocking chair this morning cuddling with her for about 10 minutes and tried to get her to say "mama". I would say it to her and move my lips slow to show her how to do it. She would then start to breath really heavy and rock back and forth (she does this when you ask her to do something). I could see she was thinking very hard and trying to say it. I kept saying "mama" to her. (She has never said "mama" after I have asked her to. She will say it while crying every once and a while but it's rare.) She looked at me and said "dad". I laughed and said, "Good job! Now can you say mama?" I continued saying it to her and a minute later she said "papa". I laughed again and said, "now how about mama. Can you say mama? That would make mama SOO happy". She started breathing hard again and rocking back and forth. I could see her thinking harder than before. Then all of the sudden she said, "mmmmmmmmmmm". Then she looked at me with a BIG smile.

Tears then came streaming down my face and I gave her a big hug and kiss. I knew that she was so proud of herself for getting that far and I was SO proud of her for trying to say mama. It made my day :-)