Half Marathon 2013

Thanks to my amazing husband for taking time off work to watch the girls, donations from friends, and help from family... I was able to fly to Florida to be with other Rett families and run a half marathon in honor of our girls. I arrived on Friday night and met everyone up for a dinner. It was really nice to finally meet all the moms I always talk to. I roomed with a Rett mom named Tanis who is from Canada. I had been talking with her since shortly after Oaklynn was diagnosed. We had become really close and I was SOO excited to meet her. Her and her sister, Jolanda, are the ones in most of my pictures.

Saturday morning I relaxed and then Saturday afternoon I went over to the Expo to help out at the Girl Power 2 Cure booth. We had a booth where we sold some items and raised awareness about Rett Syndrome.

While I was there I started walking around and I saw Ali Vincent (first female to ever win "The Biggest Loser") and decided to wait in line to see her. She had just got there so there were only 4 people in line so I jumped in. I gave her a hug and chatted with her a minute. I told her about Oaklynn and Rett Syndrome and gave her a purple card about Oaklynn!

I left and went back to the GP2C booth to let them know that I informed her about Rett Syndrome. We put together a little goodie bag for her of GP2C stuff and Kelly and I went back over to her. We snuck in the front of the line and gave her a bag of goodies. She put the shirt on and took another picture with us.

We went back to our booth and towards the end when we were about to start cleaning up, Ali came over to our booth. She said she wanted to wear our GP2C shirt when she ran the run tomorrow but wanted a different size than we gave her. We did an interview with her about what girl power meant to her. I have to say that she is just the sweetest person. She is so genuine and not at all fake. She is bubbly and so fun to be around. Ingrid (the founder of GP2C) and I left the expo and went back to our hotel to get her another size. We called her and met up with her at her hotel and gave her and her friend some shirts. I am so glad I met her. She has a new show called, "Live Big with Ali Vincent" on the Live Well Network. You can follow her Facebook page too.

The next morning we got up at 3am and got ready to go to the run. Our bus left at 3:45am and the traffic was horrible!! We got to the parking lot and the starting line was at least a mile walk from there.

There were corrals based on your running pace (A-H). Each corral started 5 minutes apart with the first one starting at 5:30am. There were fireworks at each corral start time. There were SO many people (over 20,000) so pacing yourself was hard. Throughout the run there you would see Disney characters on the side of the road, not just in the park. 

It was right about mile 9 where I needed some motivation. So I pulled out my phone and played a video of Oaklynn that Austin had sent me. I cried a little big and then kept on running. I also watched it around mile 11. Seeing her try so hard to talk and how she has to work so hard to do the smallest things made me remember that if my legs can move, I can finish. How can you not get motivated by watching this video?

There were also signs that Disney had around the course that said, "MIND OVER MUSCLE" and that reminded me, that is what we are running for. So eventually our girls minds will be able to control their muscles!

Tanis and I finished the Half Marathon hand in hand.

And shed a few tears for our girls

 Girl Power 2 Cure had a tent set up where we all met up after the race to take pictures. The picture below is just a handful of moms holding their girls picture. We couldn't get everyone there at the same time.

And this picture below is moms and friends who ran for their girls too. Again, not all the runners are pictured. We had 116 runners total and raised over $200K to fight Rett Syndrome.

Picture of me with my hero!

And the BEST picture of all... my sweet girl wearing her medal. She deserves it!

If anyone is interested in running with "Team Oaklynn" or for their own daughter next year, SIGN UP HERE to be on the email list. It was an amazing weekend and I promise you wont regret it!

Live in the moment

February 24, 2012 is the day that Rett Syndrome officially entered our lives. That was the day we sat down with Oaklynn's doctor and were told the news. That was the day I felt my life was over and there was no way I could go on living. I remember trying to sleep that night but every time I closed my eyes, I kept picturing my sweet little girl grown up and in a wheel chair. I kept picturing her lying there helpless and would just start sobbing. I just didn't understand how she could go from where she was now and continue to get worse. I kept trying to convince myself that she would be the one exception to the rule and she wouldn't regress like all the other girls do with Rett Syndrome. She would be a miracle and astound everyone. I didn't get any sleep that night and I laid there crying all night. That feeling that I had was one that I have never felt before. I literally felt like my life was over. I didn't know how I could pick myself up and go about my day. I didn't eat much for a few days but forced myself because I was 35 weeks pregnant. I would sit there all day watching Oaklynn crawl around and play with her toys and just cry and cry and cry all day long. How can you sit and watch your little girl who was born so perfect and know that every day was going to be worse than the last. That she may wake up the next day and stop standing, stop crawling, stop playing, stop breathing... and every day could be the last time you see her do something that she loves. It just didn't make sense to me and hurt. My heart hurt so incredibly bad that I can't even begin to describe the pain. I just had to sit and watch my daughter regress and loose skills and there was NOTHING that could be done about it. 

That whole week was a nightmare. Anything anyone said (even if I just heard someone talking and they weren't talking to me) would make me cry. I tried so hard to go out in public and get my life back together, but I couldn't do it. I didn't see how it was possible. I have a niece that is just a few months older than Oaklynn, and being around her was SO HARD. Being around any kids her age, for that matter, was heart wrenching. 

Finally, it clicked. I was sitting there playing with Oaklynn and I realized that I had to snap out of it. Oaklynn needs me and she can't get through life without me. I realized that I needed to focus on her right here and right now. I couldn't cry about what would happen or could happen to her because if I did that, she would regress and I wouldn't get to enjoy the things she was able to do. So I let myself have that week to mourn the child I had lost. I cried and I let myself be sad. Once that week was up, I stopped reading about what could happen to her and thinking about what I would have to do for her as she got older. Instead, I started living in the moment and enjoying all that she was able to do that day. I still to this day have my moments of weakness where I sob uncontrollably... and that's OK. I think I still have the right to cry! 

When Oaklynn was born, I signed up on a website that would send me weekly emails about her growth and development. I am still currently getting those emails and I am no longer able to open them. I use to open them and cry every time they would talk about how your child should now be saying so many words. How your child will start asking lots of questions... It was heart breaking to read so I decided to stop opening them.

Our most difficult moments now are watching her have "Rett Fits". These are fits that are thrown for no reason and there is nothing you can do about it. It's a bloodcurdling scream that can't be described. It's followed by her grinding her teeth really hard, throwing her body around, hitting herself in the head, biting her hands, scratching herself... and we can't do anything to stop it. Austin and I still both have a hard time when these happen because It's hard to watch your sweet girl go through this. There is a blog that was written by a girl with Rett Syndrome. She talks about how she understands it all and how she is literally trapped and how she feels about it. I came across a blog post she wrote about taking a medication for seizures and the side effects. This is from her blog, 

"I got so afraid and had so much breath holding and hyperventilating that I could hardly breathe all day.  I became so angry that I couldn’t be around people.  I was so agitated that I couldn’t sit still.  I felt like I wanted to leave my body, but I couldn’t!  The only peace I had was when I was sleeping.  I couldn’t even urinate.  It stopped that too.  I was afraid to be around people because my arms were swinging and I couldn’t stop chewing or grabbing.  I even remember throwing myself backwards.  It has been horrible for me."

I often think of this and how Oaklynn is inside her body crying for it to please stop. How she doesn't have control over what it does and how she wishes so bad that she could just leave her body.

When I was in my moment of denial, I kept thinking that she would be a miracle and break the rules and astound everyone. Well, she for sure astounds us! She is the most amazing little girl I have met. She may not be able to walk/talk/play like the kids her age. BUT, there are things that Oaklynn can do that most kids her age can't...

**Oaklynn can light up a room with her smile. She doesn't have to say anything... just smile. We have had people comment about how they love being around her because of that. If you have met her, you would agree**

**Oaklynn can smile with her eyes. She has this twinkle in her eyes that makes you smile**

**Oaklynn can communicate with her eyes. She understands what her abilities are and what she needs to do in order to get us to understand her**

**Oaklynn has more determination and drive than any other 2 year old I know. She wants to walk so bad and I believe that one day she will**

These are some of my favorite moments over the past year that Oaklynn use to love doing...

 She loved to crawl up to her sister and laugh with her.

She was always so curious about her.

She loved to pull to stand in her crib and bounce up and down and swing back and forth.

 She would always crawl under the desk while I was sitting at it and growl at me.

She loved to rock in the rocking chair my dad made for her.

 She loved to pull to stand at her baby stroller and walk with it.

 She loved to pull all her movies down

She always thought Mickey Mouse looked better the closer she was to the TV.

She can no longer to any of these things as she has lost the ability to get around.

This journey has been incredibly hard. I have lost many friends through this journey because they just don't understand what we are going through. There are weeks where we don't leave the house because Oaklynn has been "off" and I am working on trying to figure her out again and get her back on schedule. I have to admit... This isn't the life I pictured for myself!

I am grateful for it though because I'm happy to still have Oaklynn. I'm happy I can hold her in my arms and kiss her whenever I want to. I am grateful for what she has taught me about life and for the better person she has made me. I am grateful that researchers are SO CLOSE to a cure for these sweet girls (http://girls.girlpower2cure.org/oaklynn).

We are so grateful for those that still include Oaklynn like any other child her age. For inviting her to birthday parties and to play with their kids. We may not be able to go, but that isn't because we don't want to. Life is always last minute with Oaklynn. There are many times we plan to go somewhere and are about to walk out the door and we now have to stay home because something happened (which is typical). So please don't stop inviting.  It means more to us than you know!

If there is anything I want you to get from this, it is to live in the present and enjoy your life one day at a time. You never know when things may change and never be the same. You can not go back in time to re live a moment. So just remember each day, to enjoy it and spend time with the ones you love!

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." -Christopher Reeves

Rett Syndrome Clinic 2013

We left on Thursday afternoon and flew to California to go to the Rett Syndrome Clinic. This clinic has about 8 specialists who know all about Rett Syndrome. We have been looking forward to this visit for a VERY long time. Oaklynn did SO good on the plane she was all giggles and smiles and had a great time. To be quite honest, she was all smiles from the second she saw her sister drive away with her Nana and realized that she got to be alone with mom and dad . . . hahaha.

We got in later that night, so we just went to the hotel and went to bed. 

The next morning we went to breakfast and then to the Rett Syndrome Clinic. We were there from 10:30 - 4:30. We sit in a room all day and all the doctors/therapists are in that one office. There were 3 other families there the same day and it was literally just us 4 families and the staff in the office that day. The doctors and therapists switch between rooms and come in and out. There is literally no schedule or method to their madness... but it totally works (lol)!! They had a sign on each persons door that had the child's initials and the people who she would be seeing that day. That was how they kept track of who that girl had seen.

These were the people we saw and what we got from them

NEUROLOGY - Dr. Birnbaum
We didn't have much to talk to him about. Oaklynn had a normal EEG (normal for Rett Syndrome). He is mainly there to help discuss seizures with parents as well as medication to help control them. Since Oaklynn isn't having seizures yet, we didn't see much of him (and we were quite happy about that, YAY).

PEDIATRICIAN - Dr. Mary Jones
One of the sweetest ladies we have ever met. She was WONDERFUL with Oaklynn. We were very pleased with her and all the knowledge she had about Rett Syndrome. She just taught us more about their apraxia and things that Oaklynn may come across as she gets older. Overall she was pleased with the things Oaklynn could do.

EKG - Sarah

She had a great EKG. Nothing to worry about as of right now!

NUTRITION - Gail

We were able to talk to her about what Oaklynn takes by mouth every day. We made sure that we were meeting her calorie requirements (which we are). Since she doesn't eat dairy, we also made sure that she was getting all the vitamins needed in other areas. Those vitamins that she wasn't getting, we are now supplementing by giving her that vitamin through her tube. We made sure we are doing a good amount of fluid through her button and that we could stay off the formula that we were supposed to be giving her (I hate giving her that stuff. I would rather pump her full of just straight vitamins then give her that, just to make sure she is getting the correct vitamins)

OCCUPATIONAL THERAPY - Stacey

Didn't talk to her about much. We didn't have many questions as Oaklynn lost most of her hand use. Oaklynn communicates with her eyes and mainly uses her hands to pull her hair. She still has some use of her left hand to do some things. She is also doing SO GOOD at eating by mouth, so we didn't really have any questions for her.

We then took a break for lunch 

(and some Mickey Mouse of course)

PHYSIATRY - Dr. Elaine Pico

She looked at Oaklynn's overall posture and motor ability. I brought x-rays for her to look at and she said she wanted them repeated in 6 months at the latest. She feels like Oaklynn is starting to get scoliosis. She said it isn't severe and nothing to worry about yet, but it is something that we should take precautionary measures to try and prevent.

COMMUNICATION SPECIALIST - Judy Lariviere

We talked to her about how we communicate with Oaklynn. She tried different devices to see what Oaklynn responded to the best. She first started by using buttons that Oaklynn would push. She realized that it didn't work well for Oaklynn because of her apraxia and sensory seeking. Oaklynn always wants to feel and touch things so she just kept hitting the button over and over again. So she then tried to put the button by her cheek so that Oaklynn would need to turn her head to talk. In the picture below, Oaklynn was turning her head to say, "more please". She would turn her head and her cheek would hit the button and the button would speak for her. She did fairly well with this technique but not the best. I then told Judy that we felt that the eye gaze machine would be best for Oaklynn. I told her how Oaklynn makes GREAT eye contact and speaks with her eyes. We set up the machine and tried it out.

It's a big screen (about 12 inches) that has a "camera" on it. You set it up by having the camera locate her eyes. It then tracks her eyes and speaks what she is looking at. The screen shows you what she is looking at but it does not choose the option until she looks at it for 1 second, which is a long time for a girl with Rett Syndrome (you can change the amount of time if needed). She did VERY good with the eye gaze device. We were all impressed with how fast she caught on. The session was recorded so she will be sending me the recording in the next week or two. Once I have it, I will put it on the blog for you all to see. We are in the process right now of trying to get an eye gaze machine. They are VERY expensive so it wont be approved by insurance unless THEY feel it would benefit Oaklynn. Keep your fingers crossed.

MUSIC THERAPY - Titia

Oaklynn was screaming and was EXHAUSTED by this point. She would calm down if I sang her specific songs, but for the most part she lost it. We didn't get much time with her since Oaklynn hadn't had a nap and was so tired. Music is Oaklynn's favorite so I wish we could have had more time, but Oaklynn did SO GOOD the whole day that I couldn't expect much from her.

PHYSICAL THERAPY - Marybeth Finch

Her son was sick that day so she called in that morning and wasn't able to be there.

Overall we are so incredibly happy with the visit and the things we learned. Most of all, Oaklynn had SUCH a good time. She was so happy the whole time. Loved meeting new faces (mostly because they were talking TO her and she felt comfortable with them) and hanging out with Mom and Dad all alone. We will get a detailed report in the mail from the visit which will be good to refresh our minds of what was said.

We went out to lunch one day and next to us was a lady (probably in her 60's) sitting down eating by herself. She was done eating and was reading her book when we got our food. About half way through our meal, she leaned over and put her hand on my shoulder and said, "It was an honor eating lunch next to you guys today. Your daughter is so well behaved and I just felt honored to eat with you all." We thanked her and educated her about Rett Syndrome and gave her a "purple card" about Oakynn. It was so sweet that this lady went out of her way to let us know that she felt honored to sit by us. It brought tears to our eyes and we were so grateful to be Oaklynn's parents.

We did a few other things real quick before we had to head home and Oaklynn enjoyed all of them. Here are some pictures of our trip . . .

 

We are so excited to go next year. I know that there are many things that we forgot to ask as it was all new to us and things were forgotten. We are SO GRATEFUL for the donations from others that helped up get there and learn more about Rett Syndrome and Oaklynn. Thank you all so much!!