Gastrointestinal (GI) Doctor

Oaklynn has been having a hard time eating and it keeps getting worse. It takes us at least 45 minutes to get through a meal with her. A couple other Rett mom's had told me that their daughters got feeding tubes because it started taking hours to get through meals because their daughters had a hard time eating. They believed that the girls wanted to eat and were hungry but just didn't have the energy and strength to eat (because they are always grinding their teeth and throwing their arms and body around that it is exhausting for them). They got feeding tubes for their daughters but they are still able to eat with their mouth, they just use the feeding tube to make sure they are getting all the nutrition they need.

I want to see a GI doctor to get an opinion. Oaklynn just sits with food in her mouth and doesn't chew and sometimes just gives up and spits it out. We assumed she was just starting to be a picky eater but now we realize that it may be related to Rett syndrome. I will keep you updated as I find out more.

Appointment with Geneticist

We had a follow up appointment last week with Oaklynn's Geneticist. She asked us how Oaklynn was doing and just got caught up with changes that are going on. She set us up to get an EKG (heart problems are common in Rett girls) and an x-ray (scoliosis is common in Rett girls). She has a place on her spine where the bone sticks out far and it's always bruised. She wanted to get an x-ray to see what is going on. She also referred us to a pediatric orthopedic surgeon. Because the way her feet turn in, she wanted her to get looked at by a specialist and also have him look over her skeletal structure to make sure everything was OK.

When we were done with the appointment with the geneticist, we walked about 10 feet to the next waiting room and waited to get the EKG. We didn't have an appointment but they were able to get us right in. The EKG took about 30 seconds and then we left. She did really good and just laid still the whole time.

We then went downstairs in the hospital and waited to get the x-ray done (we didn't have an appointment for the either). Daddy took her in and mommy stayed and waited outside with sister. Daddy said she did VERY good. He just had to help hold her still. 

We now just have to wait to hear back from the geneticist about the results. We are VERY pleased with our geneticist and love her. Oaklynn seems to really like her and she does a very good job at answering all our questions. She also makes sure that we see the correct doctors we need to so that Oaklynn is getting seen by all the doctors that she needs to (and refers us to the best). I will let you know once we find out the results.

Mother's Day

Mother's Day was great. Austin had to work (as he does every Sunday) so that kinda stunk but I still enjoyed spending time with my girls. When he got home I got to open up my gifts. Austin got me the Book of Mormon on CD and yogurt covered pretzels. Oaklynn colored me 2 pictures...

and also gave me this figurine...

It represents Oaklynn. Rett girls are known as Silent Angles so that's what the wings stand for and she is signing love since she can't speak. Austin said it's so that I can look at it and remember how much Oaklynn loves me, even though she can't say it. I, of course, starting crying. I LOVE IT!

Being a mom has been the best. I love both my girls so much and love being able to not have to work and be there for them whenever they need me. I love the sweet innocence of a newborn baby. Kynslee is such a sweet little girl and loves to cuddle. She is starting to coo and smile and it's just the cutest.

 Oaklynn has hard days but always makes up for it by giving me one of her amazing contagious smiles sometime throughout the day...

She has the sweetest personality but yet is a SUPER big ham. She loves to babble and LOVES when she is sung to. She loves to cuddle and play. Since being her mom, I have learned so much about myself. She has taught me more than I could ever teach her and each day she continues to teach me what life really is about.

 We went to my parents house to have dinner with my family. Oaklynn has 11 cousins and she was the youngest until her cousin Max was born 10 weeks ago. I broke down at my parents and was having a rough day. The kind of day that I call a "Rett Day". Oaklynn was in a bad mood and was being really mean and wouldn't nap. I was also having a hard time listening to all the little kids tell their moms how much they love them and saying happy mothers day. 

Seeing those questionnaires that kids fill out asking about their parents was hard for me too. Like when you ask the child, what is your mom's favorite thing to do and they child responds and you write it down. I read a few of them that my friends shared and they were really cute but it got me to thinking that Oaklynn will never be able to fill out one of those. I will never get to hear her responses to those questions and I wont know what silly answers she would come up with.

Also hearing the primary kids in church get up and sing to their mom's made me tear up because I pictured Oaklynn up there as she gets older just sitting there as the other kids sing. Knowing how much she loves music and that she will never get to sing made me sad. It was just one of those days where you can't get Rett syndrome off your mind and everything everyone does reminds you that your child can't do that. I have one of those days every once and a while and it just had to happen on Mother's Day of all days.

Luckily I was with my family when I broke down and they all understood and some even cried with me. I love my family and am grateful to them for all their love and support.

I love both my girls VERY much and am grateful to be their mom.

Testing for Rett Syndrome

Rett syndrome is not something that was given to Oaklynn from us. It is completely random. There was a less than 1% chance that our younger daughter, Kynslee, would get Rett syndrome as well. We had the option to do blood work once she was born and specifically test that chromosome to see if Kynslee has Rett syndrome. We decided to go ahead and do the test. We wanted to enjoy her and not constantly be worrying that she is not doing things that she did the day before a wondering if that meant she has Rett syndrome. We just wanted to know so we didn't have to wonder and worry.

 Oaklynn's geneticist (the one who did the testing) called us two weeks ago and left me a message telling us that Kynslee does NOT have Rett Syndrome, the test was negative.

We were really excited (I may have cried a little).

We love seeing Oaklynn interact with Kynslee. She thinks she is SO funny. We'll put Kynslee on her highchair to say hi to Oaklynn while she is eating and Oaklynn looks at Kynslee and starts cracking up. She loves having a little sister and thinks that she is just the funniest little thing ever.

It's hard for me to believe that I have a child that will develop normally. I keep thinking that something must be wrong. I haven't had a child that was independent.

Austin and I are Oaklynn's hands, feet, voice... we do EVERYTHING for her and I am having a hard time imagining a child of mine being independent. We are very excited about this news and wanted to share it with everyone. YAY!!!

Awareness

Some people think that there isn't much they can do to help us out. The biggest thing you can do is help spread awareness for Rett syndrome. My sister Stephanie (the photographer in the family) did just that and it's the sweetest post about Oaklynn's journey. She posted on her blog about Oaklynn and Rett syndrome. Her post brought me to tears reading it. She summed it all up so well. She also has new pictures of Oaklynn posted on her blog. Go HERE to read it.

How could you not want to share about Rett syndrome to try to find a cure for that sweet little face.

The View

 My dad brought to my attention a youtube video of an episode of The View that had a Rett syndrome family on it. The dad works on their camera crew and his 2 year old daughter has Rett Syndrome. It brought me to tears watching it. It's hard to watching other girls with Rett Syndrome and hear someone else describing my daughter. It's also makes me cry because I know EXACTLY how they feel and what they are going through. 

PLEASE, PLEASE, PLEASE, help spread awareness. Whether you share my blog, share the Rett syndrome website (www.rettsyndrome.org) or just talk to people about it so it becomes a more familiar disease. I can't wait till there is a cure so my daughter can finally be free of the trap she is in right now and be able to feel and act like a normal kid, the kid she wishes she could be but can't. Please view the video below . . .

The View - Rett Syndrome

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Coloring

I helped Oaklynn color in her coloring book the other day. I used those hair ties and secured a crayon to her hand so it wouldn't fall out when she was throwing her hands around. She seemed to like it.

I helped her color the purple apron and write her name... she did everything else herself :-)

Speech Therapy

(I just realized I still can't get the volume to work, even if I use youtube. I'm sorry! Hopefully I'll get it figured out soon.)

Oaklynn LOVES speech therapy. She has a "Communication Book" that she uses to make choices and tell us what she wants. She ALWAYS chooses to sing if we make that an option. She LOVES to sing. This first video is a small clip of her favorite song to sing. You'll notice that Melissa (the therapist) stops singing every once and a while. She does that because we are working on eye contact so when Oaklynn looks away, Melissa stops singing. It gets Oaklynn to realize that if she still wants to sing, she needs to keep eye contact with Melissa. She is doing really good. Here is a small video of her favorite song, "5 little monkey's"...

CLICK HERE FOR VIDEO

This next video shows her making choices. She has a picture of a star on one side that represents the song, "Twinkle, Twinkle little star" and a picture of a school bus on the other side for "Wheels on the Bus". To make choices she always looks at the item she wants, looks at you to see if you are looking at her and then looks back at the picture. Sometimes she'll hit it but she usually does what she is doing in this video...

CLICK HERE FOR VIDEO

Sister love

Oaklynn loves to hold her sister. She loves it when we put Kynslee on the floor with her. Unfortunatly we can't walk away or let her too close to her sister becuase of her apraxia (unable to control her arms). She smacks her sister when she gets too close. I know she is sad when she makes her sister cry because she gets a sad look on her face that she is disapointed that she hurt her sister.


Here are some pictures of her playing with Kynslee. There isn't anything that can get her away from that train toy. When I put Kynslee down, she crawled right over to see her.

Whenever I let her get close to Kynslee, she tries to hold her hand...

And here is a photo shoot I did of Oaklynn, my little ham...

I love these last pictures because it looks like she is standing on her own. She is still not able to do that but she looks like such a big girl!

Date Night

I have a few drafts written, I just haven't been able to publish them because the volume on the videos aren't working. It works just fine on my computer but wont work when I put it on he blog. But previous videos on my blog, the volume works just fine so I'm not sure what is going on but I haven't been slacking... just trying to fix this technical difficulty!

In the mean time, here is a post without a video...

Austin and I took Oaklynn out on a date with us (without baby sister). We noticed that she was getting jealous of her sister and having a hard time with  her in the house. We had my mom watch the baby while we took Oaklynn with us to look at a home (we are looking to buy a house) and then out to dinner with us. She was smiles the whole time and had a blast. Just love this little girl. She is such a ham...

Sorry the quality of the pictures isn't great... it was on my cell phone.