Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Wednesday, February 24, 2010

Broken Wrist

I have decided that Abby is about the toughest little girl I have ever met. Last night, she lost her balance in Logan's room and fell forward. She tried to catch herself on his crib, but she still fell down. She cried a little, but was consolable. She ate a decent dinner, and then played as usual. Later that night, she was pretty cranky. We thought it was her acid reflux, but I checked her arms and legs to make sure she didn't hurt herself when she fell. I poked and prodded all over her hands and wrists. She didn't seem to be at all bothered. This morning, while she was eating breakfast, we noticed she wasn't moving her left arm, which is very unusual. She usually pats her chest with both arms. Knowing that her pain tolerance is abnormally high, we took her to have an x-ray. Sure enough, she has a broken wrist. It wasn't swollen, but the more they touched it, the more tender it must have felt. She will have a cast for 4 weeks (purple, of course). She was in a great mood all day. What a trooper!

Unfortunately, the hand that is fractured was her left hand. She uses her left hand to make choices and push the buttons on her toys. So far, with the cast on, she won't do anything with it. We are a little fearful that restricting it's use will affect the little function she does have in her left hand, but praying that forcing her to use her right hand will make that hand stronger than before.

Tuesday, February 23, 2010

Matching Puppies!

Logan loved Abby's puppy, so we got him on for his birthday. They both love to listen to them, especially at bedtime. So cute!

***If anyone happens to be up at 1am (in Louisville), there is a program on PBS that will be featuring Rett Syndrome. It is a Charlie Rose presentation about the brain. The time is different in different areas, so check with your PBS station to find out what time you can watch it. Hopefully, I won't be up that late, so we will have to record it.

Monday, February 22, 2010

Logan's Dedication and B-day

We had a very belated B-day party for Logan on Sunday, after his dedication at church. Abby was having a rough time on his Birthday, so we rescheduled the party a little. He was very happy to be the center on attention, loving every minute of it. He also did well for the dedication. We go on stage with a lot of other families for about 5 minutes. That doesn't seem too long, but when Logan wants to get down, you either put him down or he screams. Neither would have been a good idea on a stage in front of a couple thousand people, so we were happy that he was distracted by all the people and lights.

The purpose of the dedication is to give parents (and the church family) an opportunity to formally commit to raising their child to know and accept Christ. It's a good reminder to us of what really matters when it comes to raising our kids. It's too easy to focus on keeping them happy and healthy, especially when keeping them happy and healthy is a challenge. Of course we want them happy and healthy, but that's not the most important thing.

I thought so much about what we wanted for Abby when we first received her diagnosis. Most of our dreams for her were crushed, but we had to think about what we really wanted for her. It is hard not to dwell on all the things that we want to her do and experience. Most of all, however, we wanted Abby to have a relationship with Christ. And that was the one dream that wasn't crushed. I figure, Abby's relationship with Christ must be special. He is the only one who knows her thoughts, and understands her in a way that no one else does. Of all the communication strategies that we will teach her, nothing will be more important than teaching her to communicate with her Savior.

Train a child in the way he should go, and when he is old he will not turn from it.
-Proverbs 22:6

Friday, February 19, 2010

First Orthopedist Visit

Abby went to her first orthopedist appointment yesterday. Our pediatrician told us a few weeks ago that he thought her spine was curving a bit to the right. Scoliosis is very common with Rett Syndrome, so we had an x-ray done to check it out. After looking at the x-ray, the ortho. told us that her spine is straight, no curve at all. We won't have to go back unless there is a concern later. Yay! Praise God for some very good news!!!

Tuesday, February 16, 2010

More Snow!!

We have enjoyed our snow day today. Abby has had a good day, no seizures to write about since Friday. Yay! She is still pretty unsteady and tired. She is very cuddly, though, which is soooo sweet. Adjusting medicine is not fun! I hope she sleeps well tonight, so she can go to school tomorrow. She has only been a few days this month, and she will have to miss on Thursday because of an appointment. What a crazy month! I know she misses her teachers and therapists!

We need to get Abby's glasses fixed.... again. It's a good thing we are right down the street from the optometrist. It seems like we are there every week! Abby is doing a great job of keeping them on, now its Logan who is REALLY wanting to get his hands on them.

Monday, February 15, 2010

Research to Reality

The International Rett Syndrome Foundation has recieved a one day donation for add space on the MSNC website. The site averages over 3 million views per day, so this is a great opportunity to get the word out out our cause. On Feb 24th, go to their website, www.msnbc.com, and show your support at whatever level feels good. It's a great time to give because donations will be matched, as a part of the new campaign, Research to Reality: Funding Progress. Please help Abby and everyone else suffering with Rett Syndrome. We need your support to make a cure a reality!

Visit www.msnbc.com Wednesday, Feb 24th to show your support for Rett syndrome

Sunday, February 14, 2010

How time flies!

February 2007

February 2008

February 2009

February 2010

Saturday, February 13, 2010

Here we go again...

Unfortunately, Abby has started having seizures again. She had a couple on Wednesday and Thursday. Our plan was to wait and see if they stopped, and schedule a video 23 hour EEG for next month. On Friday, however, she had 13 seizures. Our neuro's office sent us to the hospital, but when we got there and talked to the neuro, we decided that Abby didn't need to be admitted. Abby had a rather high dose of generic Keppra last month when she was sick. Since then, we have been slowly lowering the dose to a level that will not cause dizziness, but will keep seizures at bay. Apparently it is now too low. We also refilled her prescription on Monday. Apparently, pharmacies get generics that can be 85-115% absorption (as opposed to 100% for the name brand). Each month, they buy the cheapest one, so the absorption rate can change from month to month. The refill we got on Monday could have had a much as 30% less of an absorption rate as the month before, which isn't great when her body is still adjusting to the medicine. That seems a little crazy to me, but what do I know? It was the perfect storm. I hate that Abby had to have seizures, but at least now we have know that she cannot tolerate generic AED's.

Now, we raised her dose a little, and we are giving her only the name brand Keppra. We could do that at home, so we definitely didn't want to stay in the hospital if it wasn't totally necessary. We are also giving Abby Klonopin, which is a pretty fast acting AED, to prevent seizures until the increased dose gets in her system. The Klonopin does make her unsteady, so she is unable to walk again. We are praying that she will only be on the Klonopin a few days, and she will recover much quicker this time. This was her 3rd visit to Kosair this year. We're hoping it is her last. The more we learn about managing her seizures, the fewer trips we will have to make.....I hope. Of course, Abby has been a good sport. The Klonopin makes her a little agitated, but she likes it when we hold her up and let her "walk" around the house. Of course, she's loving her movies. Thank goodness for Little Einsteins!

Wednesday, February 10, 2010

Snow Days

Abby went back to school on Monday, and had a good day. Her teacher said she seemed happy to be back, which is always great to hear. School was out yesterday and today because of the snow. We enjoyed hanging out around the house in our pajamas.

Abby's Nonnie gave her a Violet puppy a few weeks ago, and we finally got online to personalize it for her. She has been having so much fun with it. It is so cute. She grins whenever it says her name.

I love it!

Saturday, February 6, 2010

Abby is doing well enough to start back at school on Monday. She has been without seizures for a couple of weeks, and the medicine seems to have very few side affects, other than making her a little dizzy, or unsteady on her feet. We have lowered the dose almost in half, which has helped out a lot. She is walking independently again, but her balance is still not quite what it was before. She has run into the wall a time or two, and has almost fallen several times. We are letting her walk, but we're just staying close enough to catch her if we need to. We're thinking after a few more days, she won't even need us to do that.

Wednesday, February 3, 2010

Wishes in the Dark

I can't take credit for writing this, but it really hits home for many of us. I've seen it posted on a listserve, and came across it again tonight on another blog. It's a tearjerker, but so true.


Sometimes when she's sleeping
I can see in my mind's eye
the little girl I thought I had,
the one who said good-bye.

Sometimes when she's sleeping
hands folded by her cheek
I close my eyes and see before me
a child who can speak.

Sometimes when she's sleeping
she seems so whole and well
I can't believe she won't awaken
with dreams of which to tell.

Sometimes when she's sleeping
and the tears in my eyes overflow,
I steal what kisses I can in the dark
and wonder what joys she will know.

Sometimes when she's sleeping
and my eyes ache with tears unshed,
I pray she'll always be full of peace
as she slumbers in her bed.

Sometimes when she's sleeping
I can almost hear her say
"I love you, Mom, with my heart
and my soul, each and every day".

But always when she's sleeping
I am full of pride
at the miracle that is my daughter
and the perfection that is inside.

-----author unknown


Finger painting sounded like a good idea.....or not.

Tuesday, February 2, 2010

She's up and moving!

Abby likes to stand in front of the computer and listen to the fan. She thought it was particularly funny this evening.

Abby is walking better every day. Today is the first time she has been able to walk without support since she started having seizures a few weeks ago. Yay Abby!!!!

Monday, February 1, 2010

Great Day!

Abby had a GREAT day today!!! First of all, she slept well last night. She has now gone a whole week without seizing. I'm thinking we are finally getting a handle on it. We are slowly lower her dose of Keppra. Her balance has improved so much. She is sitting up independently again, and is walking so much better than yesterday. Her balance is still preventing her from walking without help, but I am thinking that the balance problems may be due to the Keppra. Hopefully, she will greadually adjust to the medicine, or we can lower the dose to a more manageable level for her. She is getting her strength and energy back. It's so great to see her up and moving!!!