Friday, March 16, 2012


Ever since we found out Oaklynn has Rett syndrome,  we have had a lot of changes:

We have been trying to figure out the best way to communicate. We know that she understands us, we are now just trying to figure out how to understand her. I've been giving her choices of things to do and watching her either smack at one or stare at one to make a choice. I ask her a question of something I KNOW she wants to do (ex: do you want to rock in your rocking chair) and watch her face light up. We are now responding to her with, "Oaklynn, mama knows you want to do that because of the smile you gave me." or "Because you hit the banana, mama knows you would rather have that over squash.". We're trying to help her understand how we are understanding her so we can all communicate better.

Being able to communicate with her has made things so much better. My family has even mentioned how they understand her more and feel like they can talk to her and communicate better with her. It's obvious she understands what you are saying to her because of the way her face lights up when you talk to her like a big girl. She was never included in conversations before because we thought she didn't understand us. When you talk to someone and they don't respond, you just figure they don't get what you're saying! She loves to be talked to and asked questions and included in the conversation. Below is a video of proof that she understands us. When her apraxia gets bad and she can't control her arms, she can't do things like this. But she has moments that are calmer that she can...

Oaklynn has been pulling her hair for a LONG time now. A few months ago she started biting her left wrist. About a month after that, she started hitting herself really hard in the head. The arm biting and the head hitting started getting better but she still always has her hands pulling her hair. Now that we know that she doesn't WANT to be doing that stuff, we are going to try our best to help her out. We bought an arm brace (  online to put on her arm when she starts hitting herself. She doesn't seem to mind when you hold her arms down. Of course she fights you because she can't control it, but she doesn't make a face or a noise that shows she's irritated. Recently she only bites her arm when angry but she is always pulling her hair and has started hitting her head more often again. It could get worse as time goes on but we wont know until we get there. I should get the arm brace in the mail this week. I'm hoping that this will help her to be able to focus and play the way I know she wants to. I just bought one (although I know I'll need many) because my mom is wanting to make her some. We just needed something to look at and go off of to figure out the best way to make it!

Oaklynn has always stood on the inside of her feet (very far inside) and with her toes pointed out. We were told by he PT that this is because of her low muscle tone. I took her to an orthotist about two weeks ago and we fit her for orthotics ( We are hoping they will straighten her feet out and help her with stability while trying to walk. She pulls to stand all the time so now were working on stability.

My sister had her sweet little boy recently. Pictures do not do this boy justice. He is just the cutest thing ever! I am so excited for Kynslee to come. Oaklynn got to see him and I was anxious to see what she would do. We held her arms down and got him close enough for her to see him. I said, "Oaklynn look, mama has a baby. This is your cousin baby max. You're going to have a baby soon too! Baby Kynslee is going to come soon to meet you." She stared at me the whole time I was talking and then looked down at Max and got a big smile on her face. It's moments like that, that you know she understands what I'm saying. Any time I talk about our baby Kynslee, she gets happy. I think she's just as excited to meet her sister as we are.

We have a new pediatrician (becuase our old one was a JOKE. Never listened to my concerns or got us the help we needed). We went to see her yesterday to talk about the best way to help Oaklynn. She is not super familiar with Rett syndrome but she is very "natural", meaning she'll give you vitamins and things before she would ever recommend a drug. She gave us 3 new vitamins, 2 for Oaklynn's brain development and 1 for her liver. The liver one will help her with digestion and in turn help her sleep better. Oaklynn has been off gluten for a couple months now and her constipation is pretty much gone. It is very common for kids with Rett syndrome to have constipation problems. Oaklynn's would be so bad that she would scream and bleed every time she pooped. It was so sad!! She was always in so much pain because she had such a hard time pooping. Since being off gluten she poops regularly now and we don't have those episodes.

Oaklynn's therapists have never worked with Rett syndrome before. They have all done a ton of research about it and are doing all they can to do what is best for Oaklynn. They all see lots of potential in her and want what is best for her. We are SUPER lucky to have such great therapists. Right now I am waiting for a speech therapist to call me and I'm trying to get a music therapist as well. If you know Oaklynn, you know she LOVES music more than anything! The second you start singing to her, she calms down and just stares at you. A huge smile comes over her face and she is so happy. Right now we have Occupational Therapy, Physical Therapy, Developmental Specialist, working on starting Speech Therapy and hoping to get Music Therapy!

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