Oaklynn lost a lot physically during the regression phase. What she can do currently is roll over and then from her tummy, push herself up to sitting. She sits "w" which is really bad for your legs. It's when your knees are bent with feet behind you, but your bottom is on the floor.
(below is her "w" sitting)
I have tried so much and couldn't think if anything more to do to help her. Finally I thought about putting her in a sleep sack that was tight so that she couldn't spread her knees apart. That way she could kneel but not "w" sit. I contacted my friend Brittany and asked if she could help me out. I sent her Oaklynn's measurements and this is what she came up with...
LOVE the fabric. Oaklynn loves bright colors, so that was perfect. Also, it is SUPER soft and Oaklynn is a sensory seeker, so she is loving the feel of it. And the best news is...
IT WORKS
She can still get up on her knees, but do you notice how she can't spread her legs apart to "w" sit? It's perfect!! Another good thing is that we can't put any blankets in Oaklynn's bed with her because if she gets it over her face, she can't pull it off. This helps keep her warm at night! We are so happy with it.
I am all about supporting small businesses so please show Brittany some love and let her know that Oaklynn sent you her way. Her Etsy shop is currently closed, but not for good. So stay tuned... she will be back.
Click on THIS LINK for her Facebook page, and THIS LINK for her Etsy shop page.
Support girls with Rett Syndrome! Let others know that you run for a cause. You know a little girl with Rett Syndrome and you run because she can't. About $2 from every shirt will go into Oaklynn's Benefit Fund. We need 50 ordered for them to even print. PLEASE HELP US!!!
If you haven't yet, you can read about our very first EEG HERE.
We have been noticing Oaklynn doing some things that seem like seizure activity. She has little twitches and sometimes has her tongue hanging out and rapid eye blinking. She has been doing this for some time. We had an appointment with our Geneticist a few weeks ago and I told her about them and she said she was going to contact our neurologist to tell her about them. A few days later, I got a call from the nurse that works with our neurologist. She asked me to explain what I was seeing from Oaklynn. I told her about it and she said she would talk to our neurologist and call us back. About a week later I got a call from the hospital telling me that our neurologist is wanting us to go in for a 48 hour EEG ASAP but they were booked until February. She said that it would be a last minute appointment where someone doesn't show up and so they will call and ask me to be there in a couple hours. I told her we would make that work. Well, I got a call on Friday 12/7/12 and they said that they have had 2 cancellations on Monday and offered us a spot and we took it!
Austin, Oaklynn, and I checked into the hospital at 9:30am. We went up to the epilepsy floor and they walked us to our room. They then explained what was going to happen . . .
[ They were going to put electrodes all over Oaklynn's head and then wrap it up in gauze so that she couldn't pull them off. There was a camera in the room so they could also watch her the whole time. If Oaklynn started having one of her "episodes" that we see at home, we were to push a button. When the button is pushed, the TV goes off, all the lights in the room come on, all of our nurses (and a couple more) get paged and a light outside our door starts flashing and beeping. They said that when we push the button, it marks on the EEG that the button was pushed. The neurologist will look over the whole EEG, but will pay extra attention to where the button was pushed and watch what she was doing at that time. They also gave me a log to write down any time I saw something different that I had questions about.]
They then started putting the electrodes on Oaklynn's head. She did SO GOOD until about half way through. They then had to hold her head down and in place so she didn't move at all. If she moved too much, she would remove the electrodes that were just placed on her head. She did not like being held down.
Then they wrapped her head up in gauze. She was still prett happy despite she had a hard time seeing. The gauze was so tight that it pulled her whole face in. So her cheeks were huge and her eyebrows were pushed down and made her eyes squinty. He is too cute . . .
Watching Mickey Mouse Clubhouse with Daddy . . .
Here is a video I took of Oaklynn. We were trying to get her to lay down and go to sleep but she didn't want to. In the video, she does a couple of full sit ups (her PT, Beth, will be so proud)! Although I wanted her to lay down and sleep, I was so proud of her for doing sit ups. She is also "talking" quite a bit in the video . . .
Here is the monitor. This is in our room so we can see what they are seeing. Behind the picture of Oaklynn are her brain waves. I could see some of it but not all that they see . . .
I had to put her arm braces on so that she wouldn't pull the electrodes off. Finally she fell asleep . . .
I brought my laptop so that I could work on Vinyl orders from customers while I was there. This was my work space . . .
When she fell asleep, I took the braces off. She has a hard time sleeping with them on . . .
The lights have to be on at all times so they can see her on the camera. She slept pretty good at night but awoke a couple times very suddenly. I also noticed that she snores a little. I never knew that because I don't usually sleep in the same room as her. I noticed her twitching a lot and rolling around and I was concerned about it so I wrote it in the log. I walked over to the monitor where I could see her brain waves and noticed that the people who were watching her on the camera were watching her very closely at that time. I saw them zooming in on her and moving the camera around. Her "episode" lasted about 8 minutes. I called the nurses in to let me know that they could do vitals and such (because I asked them to please not bother us while she was sleeping since sleep is hard for her to get to sleep and I would let them know when she woke up). When they came in, they said that they had been watching her and talked to me about seizures. It sounded to me like they thought she may have just experienced one but they never said that. Once they left, about 15 minutes later, I pushed the "seizure button" because I saw her start to do her twitching and tongue out stuff that I was questioning. They all came in and watched her for a little bit, listened to her and then left.
In the morning, the neurologist came in and discussed the results with us. He said that there were no seizures happening while we were there. He said that we could stay for the full 48 hours, or we could go home but it was completly up to us as it was not a prison and we could choose what we wanted to do. I called Austin to talk to him about it and we decided to go ahead and go home. She did everything we normally see and felt like we got our answers.
She does have problems sleeping and the neurologist (who works closely with sleep problems) mentioned getting a sleep study done to see what could be causing that. We have discussed it but have not decided weather to do it or not. If we do, it will be after the craziness from the holidays wears down.
Here is a pic of Oaklynn after they took the electrodes off, ready to go home . . .
It is not so easy finding the right toy for a special needs child. For those of you who have one, you know what I mean. Here are some websites that have toys geared toward children with special needs . . .
Ability station provides special toys for many different special needs and skill sets All toys are therapist approved for a child’s growth, development and fun.
Lakeshore is dedicated to creating innovative educational materials that spark young imaginations, instill a sense of wonder and foster a lifelong love of learning. Although not specifically targeted towards children with special needs, a number of their products can be very useful for children with special needs.
Fun and Function designs sensory toys and therapy equipment for individuals with special needs to help children learn adaptive responses for what they may lack or crave.
Special Needs Toys offers a wide range of special needs toys, from mobile Multi-Sensory, to Swings, Trampolines and otherSensory Integration kits, Switches, rewards and small Sensory toys.
Founded in 1995 by the mother of a child diagnosed with Autism, Different Roads to Learning carries over 500 products carefully selected to support the Autism Community. You’ll find everything from basic flashcards, books and timers to advanced social skills tools to support you at every step.
Toys ‘R’ Us has a complete ”Differently-Abled” Kids section. Categories include: Auditory, Creativity, Fine Motor, Gross Motor, Language, Self-Esteem, Social Skills, Tactile, Thinking and Visual
From over sized building blocks and bungee jumpers to snapwall playsets and sand and water activity tables, eSpecial Needs offers a variety of appealing active play toys for children with special needs, including autism.
PlayAbility Toys designs and develops toys for children with special needs. Toys are geared towards children on the Autism Spectrum, individuals who are blind & visually Impaired, cognitive challenges, hearing impaired, physical challenges, speech delay and more.
11. Momo's Special Toys
Momo's Special Toys provides products that specifically aim to enrich your child's academic skills while still being fun and purposeful. For toddlers and preshchool-aged children, they carry many toys that stimulate curiosity and promote your child's necessary developmental skills.
They are dedicated to making visually structured activities designed to help develop multiple skills for persons with autism. Many of their activities contain different levels, creating a connected hierarchy Learn by doing - then progress to each higher level to expand learned skills.
They are a small family run business based in Surrey. They had a dream, after years of struggling to find affordable sensory toys for their 2 children with additional needs. They decided to give it a go and see if they could make a difference.
"Our goal at The Sensory Spectrum Shop is to make the world a little easier and less overwhelming for the autism and special needs community. Our mission is to empower our community by providing a one stop shop of excellent autism and special needs products, as well as having a place to come to for support, encouragement and reliable information. Spend some time. You will discover hundreds of therapy products, wonderful toys, DVD's, books, and teaching resources."
15. Warren Prescriptions and Toyology
Achievement products provides and excellent collection of therapy, exercise and special education products for children with special needs. They offer a wide variety of innovative and affordable products to assist therapists, educators and parents meet each child's individual needs for learning, enhancing new skills and promoting each child's independence.
If you have any more that you would like to share... please leave them in the comments. THANKS!!
You may hear parents of a special need child say, "I hate (insert syndrome/disease here)." For instance, I always hear from other mom's, "I hate Rett Syndrome." I want to clarify what is being said. We LOVE our children, but are not happy with the trials they have to deal with on a daily basis because of their syndrome. It is very hard to watch your child struggle and there is nothing you can do about it.
With Thanksgiving having just passed, I want to type up a gratitude post about Oaklynn. I want everyone to know what I love about her (because sometimes posting about what Rett Syndrome does to her can sound negative and I want everyone to know how grateful I am for her).
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1. I LOVE Oaklynn's smile. She doesn't just smile with her mouth. She smiles with her eyes too. Her smile can make anyone smile. It always brightens up my day.
2. The way she taps my back when I give her a hug. She tries to hard to let me know she loves me.
3. Her giggle is contagious. When I hear her in her room playing with her sister (or by herself) and she starts giggling, it makes my day.
4. Her patience with me. Sometimes it takes me a while to figure out what she wants/needs and she is very patient while I try to figure it out.
5. Her love toward her sister. When I sit her little sister next to her, she always tries to reach over and hold her hand. The joy on her face when her sister is around is priceless.
6. Her excitement when Daddy is home. She loves her daddy and I love how happy she gets when he plays with her.
7. The way she looks when she sleeps. She is so still and calm and looks so peaceful.
8. Her determination and hard work teaches me a lot. She never gives up. She is working so hard and I know one day she will be able to walk.
9. The happiness on her face when she gets to hang out with mommy. She was so happy she got to help me decorate the Christmas tree.
10. She loves going out running with me. She inspires me to keep going.
11. I love her silly personality. She is a huge ham and she makes me smile.
12. When we eat breakfast and lunch, we listen to Pandora "Mickey Mouse Clubhouse" station. When she hears one of her favorite songs she looks at me and her eyes get really big and a huge grin comes over her face. It's the cutest thing ever.
13. When she get a word out or is able to pick something up that she wants, she is overcome with excitement. Her whole body shows how happy she is.
14. She loves all her therapists. She has it 6 times a week! Physical therapy is the hardest for her, but she is always smiling, giving hugs, and laughing with her therapist.
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These are just a few of the things that I love about her. She has taught me so much about life and how grateful I should be for everything I have. Despite all the trials she has, she continues to find a reason to smile. I am blessed to have her in our home. She is a perfect little girl and I have the honor of being her mom. I couldn't ask for anything better. THANK YOU OAKLYNN for being in my life. I thank you for all you have taught me and continue to teach me. You'll never know how big of an influence you have had on my life and how much you have changed me for the better.
