Online Boutique

I am going to be doing an "Online Boutique" to raise money for Oaklynn's expenses sometime soon. I am asking for donations for "boutique items" such as jewelry, headbands, clothing... etc. I am going to turn around and sell those things online and put the money I make into Oaklynn's fund.

If you or anyone you know sells such items, please have them contact me. Those more stuff I can find to sell, the more money I can make to help my sweet girl out. THANKS!

Button Baby

Today I went to lunch with a good friend of mine, Megan. She has a daughter, Cloey, with special needs who has had a feeding tube for years. We went to lunch and she told me about her daughters feeding tube and helped me understand it more. Her and her daughter Cloey even got a gift for Oaklynn...



It's a baby that Megan put a button in for Oaklynn to have so that she has a baby that has a button just like her!

I was able to show Oaklynn the baby and explain that she was going to get a button in her tummy, just like this baby! I was really good to talk to someone who is going through it and knows all about buttons. She was even able to show me how it works and how to change it. It was on a doll so I'm sure changing Oaklynn's will be much different, but it was still great to be able to experience it, knowing I wouldn't hurt the baby, before I actually have to change Oaklynn's.

 

Here is a little video about Cloey. She is one of the sweetest little girls I know. This video was done in 2006 so it's 6 years old. In the video you will notice them say that they didn't think she would survive this long. She is still alive and just as friendly and smiley today! Her parents make tough decisions daily about her health/life and are amazing caregivers to her. She does not have a diagnosis. She is the only one to ever have what she has. Please take some time to watch this video! She will melt your heart.

 

If you would like to follow Cloey's journey and learn more about her, here is her blog. . . http://princesscloey.blogspot.com/



Travel help...

HELP

 

 We are wanting to take Oaklynn to see a few specialists who work specifically with Rett syndrome. We feel like this will be VERY helpful for Oaklynn. The only down side is that the closest location they travel to is Oakland, California. Paying for 3 of us to fly there for a few days is over $800 (and we will still have to pay for hotel and a rental car). Wondering if anyone has some buddy passes or flying points (or whatever they're called) that they would be willing to share. I would even trade vinyl or something. We just can't afford to pay for us to go but really want to get Oaklynn there. Any help or suggestions would be great!

Inspiring words from Karly

One of "our" Rett girls has just recently passed away. I have followed her blog and been touched by the words she posts. As she knew her time on this earth was coming to and end, she wrote the following...

The Invitation

Karly’s precious little hands. She was so determined to share her thoughts with us, then eventually the world after we found a way for her to communicate at age 10.

When her health decline significantly in February 2012 Karly wrote:

I am writing this in the middle of the night on February 15, 2012. I am so worn out. My body has struggled so much this past year and I haven’t had much of a break where I have felt great.
I can’t tell you how grateful I am for the ways God has used my life to bring understanding and hope to families affected by this terrible disorder of Rett Syndrome. I didn’t have much hope for my life as a little girl, enduring many years of struggle before I could communicate. But communicate I did, and to know that so many people have had their minds changed because of my story has brought great comfort to my final years. 
 
Much of my family have been changed too and I feel glad for their love. Most of all, my deepest love and gratitude goes to my Mom for the life she gave to me through her devotion and continual sacrifices on my behalf. I have shared many times with her and Gregg that the day I die will be the greatest day and that I wish for them to remember that. I am free at last. I am free!!!!! I have so much joy in knowing my struggle will soon be done. 
 
God is my best friend, and He has given me so much comfort to have endured disability and pain. But it’s been hard, so I hope that there will be a cure for the young girls who are coming into this world affected by Rett. I have never forgotten the joy Gregg has brought into my life by marrying my Mom. He has walked through many difficult times with us. My sister Leah has had a life that for many years I thought I wanted, but I’m so glad for the friendship we have had and the ways she has loved me through it all. 
 
I hear my friends weeping and I only wish to say, please do not weep for me. I am so alive now. I have seen the other side and it’s so much more glorious than you can imagine. I am not eloquent. My brain is tired but my heart is content that my time spent in this world has not been in vain; that my music and words will continue to be used by God to change hearts and lives.
I am sending you so much love.
Karly

Karly and her Beau 2011

 

 

Thank you Karly for your inspiring words. You may be gone... but you will never be forgotten!

 

 

GI Surgery

On September 25th, Oaklynn is having surgery to get a feeding tube. It is very common for Rett girls to have feeding tubes because of their digestive problems. A lot of them are underweight so they get feeding tubes to get adequate nutrition. Oaklynn is not under weight. In fact, the GI kept saying how well nourished she looked. She even said, "You guys must spend a lot of your time making sure she is well fed." And she is correct!!

Which leads me to my next point. Feeding a child with Rett syndrome takes a LOT of time. They have a hard time chewing (sometimes she doesn't chew, she just swallows. So we have to be careful of the kind of food we give her) and the body has a hard time digesting it. Oaklynn takes at least an hour to eat each meal and then at least 30 minutes for each bottle. Then on top of that, the time it takes me to prepare and clean up each meal. Total, I probably spend about 5 hours a day on meals for Oaklynn. That is a LOT of time if you think about it. Once we get a feeding tube, I am hoping to be able to feed her one meal a day through the tube to cut down on the time I spend feeding her (she will still be able to eat from her mouth with the tube in).

Oaklynn also has a hard time drinking. She will drink about a 6oz bottle of breast milk every morning and night, so that is 12oz of fluid she is getting a day. She has a hard time drinking throughout the day. We try and she just spits it out. She constantly has purple bags under her eyes and is constipated from dehydration. In the Arizona summer, I worry about her not having enough fluid. I worry that I am going to turn around in the car and see her passed out. Having the tube will give us the ability to give her the right amount of fluids she needs (this was the reason we went to talk to the GI about a tube in the first place).

Oaklynn's surgery is Tuesday, September 25th. We check in to the hospital at 6am for a surgery time of 8am. It is a fairly quick surgery. The GI doctor intubates her. She sticks a long camera down her throat and into her tummy. The camera has a light on the end of it. She searches around her stomach for the perfect place to make the incision and shines the light against her skin from the inside of her stomach so you can see it on the outside. Once the surgeon sees the light, she makes an incision there and puts the "button" in place. Her button will look something like this...

The half circle part will go inside her stomach and the other part will be on the outside. It will be small and you wont notice it unless you actually see it. Here is a picture of someone actually wearing one...

It's one way so when it's open, nothing can come out, you can only put things in it. Once the surgery is done, she said we may stay at the hospital overnight. They like to put things through the tube and watch her to make sure she is doing OK with it.

She will be able to do all her normal activities once it has healed. The bard button will need to be changed every few months. The GI said for the first time we go see her and she can do it for us and then after that, we can do it ourselves. We may end up getting a "mickey button" within the year, she just wanted to start with a bard button for Oaklynn and go from there.

We feel good about this decision. It was one we were afraid of when we first learned about Rett syndrome and that this was a possibility but now we are excited to be able to get her the right fluid and nutrition that she needs (also to be able to give her the medications we need to without a fight from her... yay!!). Of course we are worried about the actual surgery part. She said it's a serious surgery but the good part is that it is fairly quick.

Screaming spells

Random screaming spells are a part of Rett syndrome. Oaklynn has started these just a couple weeks ago and they are getting worse. They are now happening about once a day and each one lasts a different amount of time. Today was the worst so far...

Austin got Oaklynn up from her nap and she sat with us on the couch and hung out. I got up to do something and next thing I know, she starts fussing and then starts screaming. I put her in her crib to try and calm down (sometimes being alone in her room can calm her down) and while she was in there I put a meal together for her in case that didn't work. When I was done putting food together for her, she was still screaming. I then got her up and tried to feed her but she just wouldn't stop screaming. She was screaming and crying so hard that she was coughing and choking and having a hard time catching her breath. I took her out of her seat and went to sit on the couch with her. I turned on "Curious George" and about 5 minute into it, she finally started calming down.

Once she was calm for about 2 minutes, I faced her toward me and asked her for a hug... that was a HUGE mistake. She then started screaming again. Not only was she screaming but she then started hitting me and trying to bite me. I went and put her in her bed, layed down on the couch and started crying.

...(This week has been kinda rough. Oaklynn started out with what we thought were allergies on Wednesday and by Thursday we found out it was a cold. Then Thursday night Kynslee started to get sick. Friday morning Oaklynn developed a cough and Kynslee had a fever of 102.4. Both noses are running like crazy and neither girls could breath very well. Having both of them sick has been really rough because Oaklynn gets upset when she is sick if I let Kynslee cry. But if I hold Kynslee all day, I can't get anything done for Oaklynn (feed her, change her, clean up...). So needless to say, I was already broken down at this point)...

I gave myself 5 minutes to cry and un wind. After the 5 minutes I pulled myself back together and got Oaklynn back up (she was still screaming). I just held her with "Curious George" playing until she started to calm down again. This time I left her alone for about 20  minutes and after that, I was able to put her down to watch it by herself so I could get things done.

She was literally screaming for over an hour straight (minus the 2 minutes she calmed down for). It's not just a cry, it is an ear piercing scream that sounds like a limb just got torn off. After talking to other Rett moms, I learned that this is common in the regression stage of rett syndrome (which she is in). They all reassure me that it will go away and it wont last forever.

I am learning ways to keep calm so that I can continue to do this as these screaming spells continue (such as putting her in her room and giving myself a few minutes to be alone). It's hard to admit that she is in her regression stage but there is no hiding from it now. It's here and the only thing we can do is fight through it until we get to the next stage of Rett syndrome.

Haircut

Oaklynn has been pulling her hair out for a long time now. It started about a year ago with her just twirling her hair in her fingers every once and a while. It progressively got worse so that she is pulling her hair out and doing it ALL the time. She created bald spots on the top of her head and her hair is SUPER thin on top. I consulted my Rett family facebook page to ask the other parents if their child did this and what they did to help the situation. Surprisingly quite a few responded saying that their daughter pulled her hair out too and after trying everything, they shaved her head and by the time the hair grew back in, she no longer tried to pull her hair any more.

I thought, "There is NO WAY I would ever shave my daughters hair! It's too cute!" After talking to Austin and thinking it through, we came to realized that this probably was the only and best option. I knew that the longer we waited, the more likely she was to pull it all out on top and create a mullet. Then if she pulls it out enough, she can eventually stop hair growth in spots. After talking it through with Austin, we realized that this was the best decision for her. Being a hairstylist, this was a very hard decision for me (not to mention being a hard decision as a mom). I kept telling myself that I need to do what is best for her and not think about what I want. I was as ready as i would ever be (I would never get to the point that I would say, "I WANT to cut her hair and can't wait.") We took her into the bathroom and Austin held her on his lap while I started cutting.

I started doing it with shears and then realized that it would be too difficult with how much she moves. I brought the clippers out and started with size 8 (1 inch). We cut just the top (the part that she pulls out) and let go of her hands for a couple minutes to see if she could still pull it. She was still able to get it so we went to a size 6. We waited again to see if she would be able to pull it and she had a very hard time getting a hold of it so we decided to do a 6 all over. 

I bawled the whole time I was cutting her hair. She has the prettiest hair that is thick and blonde. Then i would look at the top of her head and see how bare it was a realize that I needed to do what is best for her. I am still having a difficult time but I need to keep reminding myself that hair grows back and this is what is best for Oaklynn. Austin is doing a VERY good job and talking me through it. He is doing an awesome job with everything.

She is still the same little girl with an amazing personality and a contagious laugh. Here are some pictures from right after the haircut.

 I put her in pajamas and realized that I don't like her in blue, lol. I put her braces on so that we could keep a bow in her hair so she would look more femanine. I then changed her out of her pajamas and put her in more of a girly outfit and realized that she didn't try to pull the bow out at all! She kept putting her hands up (I think more out of habit) and she would touch the bow and headband (so she knew it was there), but she left it alone! Here are some pictures in a skirt...

She is already doing SO much better at leaving her head alone. She puts her hands up and realizes her hair isn't there and then drops her hands and relaxes. I feel like she is paying more attention to us when we speak and can respond so much better. She reminds me of my 9 month old Oaklynn...

I really hope this helps.

Big Girl Bed

Austin and I purchased a twin size bed frame for Oaklynn. We wanted her to be in a big girl bed that she can have for a LONG time. Kynslee needed a crib and so we decided to give her Oaklynn's in stead of getting a second crib. Oaklynn was growing out of her crib. She is a BIG mover whens he sleeps and is always getting her arms/legs stuck and we always have to go in to help her out. Because of her low muscle tone, she can't get herself unstuck. 

My dad put the bed frame together and then attached 1x4's to the bed to keep her from falling out. Once it was put together, he paint it all black. It looks AWESOME and she loves it! She looks so tiny in her big girl bed.

Next, my mom is going to sew padding to put around the wooden sides. Oaklynn rocks a lot and always bangs her head against the side of her crib so we are going to pad the bed to make it safer for her. I'll post more pictures when those are done. Thanks Papa... We LOVE the bed!!

(P.S. She can no longer pull to stand but if she does, there is room to add another row of 1x4's to keep her safe)

Hot Dog!

My parents came over tonight to set up Oaklynn's new bed (we bought a twin bed frame and my dad built 1x4's on the sides to keep her in. Pictures will be posted soon). They brought dinner over and while we were all sitting at the table eating, Oaklynn was in her high chair eating dinner with us. We had Mickey Mouse Clubhouse on and Oaklynn was watching it during dinner. The song "Hot dog, hot dog, hot diggity dog" was on and all of the sudden Oaklynn said, as clear as day, "HOT DOG". We all looked at her and said "Hot dog. Oaklynn, you said Hot dog!" She looked at us and started laughing. 

It's awesome because she knows all these words. She probably has the Mickey Mouse Clubhouse songs memorized and sings them in her head. It was almost like she was singing along and all of the sudden her brain made a connection with her body and allowed her to speak and all of the sudden the words she was singing in her head came out. Her reaction was kinda shock and excitement that she said it. She was all smiles and giggles. It was a GREAT moment. . . YAY!

Eye Muscle Surgery

Oaklynn had Strabismus Surgery on Thursday morning. Because her brain can not control her body, it affects her eyes as well. Her eyes are crossed quite often and she can't help it. We decided to do the surgery to hopefully help her see better. By doing this surgery, she wont be able to cross her eyes, even if she wanted to. They loosen the inner eye muscle so that you can no longer pull your eyes together.

We were the first appointment of the day. They go by age, (because you have to fast and so they have the little ones go first) so since she was the youngest, we got to go first. We had to check into the hospital at 6:30am. We got there and signed in and filled out all the paperwork.

(Above picture is in the waiting room)

After we got called back, we went into a triage looking room with chairs and lots of curtains. I sat in the big chair with her in my lap and they did blood pressure, weight and all the fun stuff. The Anesthesiologist came and explained what was going to happen. We were originally told that we could be with her until she had the mask on and went to sleep but the anesthesiologist said that since it's a sterile environment, this was the furthest we would go. He left and her Dr. who was doing the surgery came to talk to us. Explained the surgery to us and asked if we had any questions. He said that he would only push us going back with her if they thought she would have a hard time without us. I told him that she would do fine, it was that I was worried that people wouldn't understand her limitations (that you can't leave her on the table and expect her to be fine) and other things. He said that they work with special needs kids all the time. To be honest, that didn't reassure me because Rett syndrome is so different and people aren't familiar with it. The nurse came and took Oaklynn. Of course she was all smiles and did just fine leaving us.

We waited in the waiting room for about 40 minutes before the doctor came out to let us know that everything went well. He explained recovery to us and gave us directions on how to take care of her. Right as he was walking away, a nurse came to get us to be with Oaklynn as she woke up. She was still asleep when we got there but shortly after, started waking up. They took the IV out of her and let me go into a dark room (because her eyes were sensitive after surgery) and hold her.

The nurse that took her from us to go back to surgery said that she gave her so many smiles and believed that she was giving her kisses because she kept leaning in with an open mouth and kissing her cheek. We both said, "Yep, that sounds like Oaklynn"! The nurse said that she wanted to keep her and watch her until she got some fluid and kept it down. She came back about 8 minutes later and said we could go ahead and take her home (even thought she hadn't even woken up yet). She stayed asleep the whole way home.

When we got home, we put her to bed and she slept about another hour. When she started waking up, we went in to get her and just cuddled on the couch with her. She was crying blood. It looked like straight blood, not like watered down blood. It was really sad to go into her room and see blood all over her sheets from her eyes. She had a REALLY rough time while the anesthesia was still in her system. I think she was just still really confused.

By the end of the night, we started seeing a couple smiles here and there but she still wasn't herself. It took a couple days before she was herself again.We let her watch a lot of Mickey Mouse and since it has such bring colors, I put some sunglasses on.

 Here she is a couple days after the surgery, finally giving me some normal smiles again...

 And here is a picture of her eyes. You can't see her right one very well but this is the best I could get. You can see the blood red color in her eye. They said it would be blood shot for a couple weeks and I was just thinking a little redness. I didn't realized they would look like they are bleeding!

We go back and see the doctor for a follow up on Friday morning. We wont know how effective the surgery was for a couple months. It it didn't work, he may have to go back and do it again, but I am positive hoping that everything went well.

We are SO grateful to everyone who prayed for Oaklynn and for us. For the meals that were brought to us, the gifts brought to Oaklynn and the kind words of encouragement. We are grateful for our family and friends and for the love and support. THANK YOU!!!

Swallow Study

Oaklynn had another swallow study yesterday. She did such a good job. They started out with the thickest liquid in a bottle and had her swallow that one about 5 times. When she passed that without choking, they went to the next thickest (this is the level we currently thickened her bottles to now). She swallowed again about 5 times and didn't choke so they decided to try giving her liquid that wasn't thickened at all. Doing this worried me because in the past with non thickened liquids, she chokes so bad where she turns purple and can't breath. Because it wasn't thickened, it came out a lot faster than the rest, so she had it all over her face but when she swallowed it, she didn't choke! She did about 5 swallows again and never choked!

This means that we no longer have to thicken her liquids. Because of Rett Syndrome, she may regress and need her liquids thickened again, but as for now . . .  no more thickener!! What people don't realize is how much more food she can now have. It opens her up to eating fruit, soups and many more things!

They said that because of Oaklynn's low muscle tone, the liquid would start to go down the wrong pipe to head towards her lungs but when it did, she would control it and send it the other way. This is something she was not able to do before and we are so proud of her!!