Overwhelming Strength

Annie had her last day on the Lokomat today. She had a 6 minute "walk test" to see how much progress she has made since her first day. She slammed her distance! Her first walk test - 8 weeks ago - Annie was able to walk with assistance a distance of 156 feet in 6 minutes. Today she was able to make it 285 feet! I am so proud of her! Hopefully we will get a chance to this therapy again in the summer time but until then we will keep up the walking at home.

Today I'm feeling so overwhelmed at the strength Annie has.

While most 5 year olds are doing dance or playing little league Annie works tirelessly at gaining the stength to walk. Most 5 year olds are learning how to tie their shoes and snap their fingers, Annie's hands are forever clenched and wringing, just pushing a switch is a struggle. While most 5 year olds are learning to read Annie is trying to use her eyes to communicate the most basic of needs. While most 5 year olds are driving their parents crazy talking up a storm and asking questions, Annie's not able to utter a single word. While most 5 year olds get an occasional stomach ache, Annie is plagued with chronic pain. While most 5 year olds don't have a care in the world Annie is riddled with constant anxiety. While most 5 year olds ask their parents for 5 more minutes of TV or an extra story before bed, Annie cries out in exhaustion because her brain won't allow her to sleep.

I watch her work so hard and some days I can't help but scream "it's not fair, it's not fair, it's not fair!". Not a day goes by that I don't beg for the Lord to allow me to take her place. I have come to the realization that I could never take her place, I'm simply not that strong. Annie was given these struggles because our God knew that she had the strength to live this life. What's more is that despite these struggles Annie is teaching. Annie shows us what's important in life and keeps us from complaining about insignifcant things. She reminds us of all we take for granted and without speaking a single word she is a constant example of love. I am so blessed to be her mommy! Keep up the hard work baby - you're doing great!

"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" Isaiah 40:31

Annie the Movie Star!

Well, I know that some of you already know that we have been working on a documentary of Annie and our life with Rett Syndrome. A wonderful filmaker named Susan has been capturing our simple, little life on film and documenting all the ups and downs that go into rett syndrome. It has been a little while since we have been in front of the camera but Susan has been working very hard on editing and such and will be presenting a small clip of the documentary at an exhibition on Sunday. Here is a picture of Annie with her Grampy (I just love seeing the bond between these two!) I think it's a very fitting title. I pray this documentary will spread awareness of rett syndrome (and possibly raise funds for research) and show just how amazing our silent angels are!

Orange Belt

James got his orange belt in Karate tonight. We are sooo proud of him! The scream you hear in the video is Annie cheering her brother on!

UGGG there was a video with this that I've been trying to upload for 3 days. Sorry, atleast you can enjoy the pics!

He is moving on to the next level class which starts next week.

What a great kid!

I Believe

Annie wore her "I Believe" shirt today which ended up being very appropriate. We headed to Novi again this morning to do the Lokomat. Of course Annie did awesome and loved every minute of it!

After the Lokomat we went next door to see our Augmentative Communication specialist and Gabe, the rep. for the ECO 2 eye gaze computer. Annie was very exhausted (45 minutes on the treadmill coupled with a sleepless night and very little breakfast will do that!). I was a little disheartened when Annie first got on the computer because she was so tired and so upset that I thought the day would be a waste and we would have to set up a new day and time to come back out and try the ECO. Fortunately that was not the case. After a few minutes of little response we ended up turning on some music and allowing Annie to control it on the computer:

Yes, the music is a little bit, ummm....... exotic. But Annie sure seemed to like it! You can see in the beginning of the video how she said "eat" (which was so appropriate because she barely ate breakfast!). Then when asked if she wants more music she said "more" twice!

After a little more time playing around on the computer Annie told us that she wanted to eat again, she read a story and played more music. Then she told us "I feel bad", "stop, stop". Ok, I know this sounds weird but I was soooo happy to hear that! I obviously didn't want her to feel bad but I was happy because she spontaneously communicated with me, just a feeling, just her thoughts, not a command or a request just telling us how she feels! WOW, I'm almost in tears just thinking about it!

After a few more minutes of talking Annie told us "I want go". What an amazing day!

The ECO2 is by a company called PRC and they use the MyTobii eye gaze component. This was the 3rd company that we have tried an eye gaze computer through. The difference between the ECO and the other computers that we tried is that the ECO uses the Unity Language program and makes spontaneous communication very easy. We have been looking at the ECO for a very long time. All of their symbols are available as a free download on their site so we have been slowly printing and changing Annie's pictures to the Unity symbols. Needless to say today was the clincher and we have asked our Aug comm specialist and the rep to get the ball rolling in getting the paperwork started to appeal our insurance company. We first started looking at eye gaze computers over a year ago, it was a slow process but now we are certain we are getting the right device.

I am so proud of my Annie!! I believe in her strength and abilities, I believe in her intellect, I believe that rett syndrome will be cured, I believe that cure is coming very soon, I believe Annie will talk and walk, I believe that our Lord heals. And today I caught a glimpse.

Walking, Walking, Walking

Annie had her lokomat therapy again today but this time someone very special stopped by to see how she was doing. Her PMR (physical medicine and rehab) doctor, Dr. Dabrowski. Annie just LOVES Dr. D. She smiled at him for the longest time while she was walking, as if to say "look how great I'm doing!"

Dr. Dabrowski was very impressed by how well Annie was doing. She is using between 50 and 90% of her body weight (her goal was 50% because at 100% it feels as though you are being pushed into the machine because it's heavy!) and is walking at 1.5Km/hr - a pretty good clip if I do say so myself!

Dr. Dabrowski and I talked a bit about Annie's walking and how far it's come, how strong she is, how she's able to weight shift and bend her knees now and how when she walks with us we are barely holding her at all but she has still not been able to take a step on her own. Dr. D has a theory that much of what holds back out rett girls is their intense anxiety. Researchers believe that girls with Rett syndrome release very high levels of stress hormones. They further believe that such high amounts of anxiety may be the reason our girls constantly hyperventilate, wring their hands, shake, tremor and have difficulty consentrating. (Have you ever felt anxious? Imagine feeling that multiplied and constantly.) So Dr. D's suggestion is that Annie may possibly be not taking steps in part due to anxiety. Which stands to reason because when Annie stands unassisted she typically grabs her shirt and looks pretty scared. His suggestion was to increase Annie's anxiety medication - which also stands to reason because we saw a big improvement with the introduction of anxiety meds. We will talk with her neurologist to see if he agrees, considering he was the doc who prescribed the medication. We will keep everyone posted on the progress!

Getting back to walking..... After the lokomat today Annie went to school and was all smiles coming off the bus. The kids and I were enjoying the amazing sunshine so I took Annie out of her stroller and we went for a little walk. I decided to see how far Annie could go, she was so eager to get up and walk. My little Champion walked down the driveway, 3 houses down, all the way back and back up the driveway! Woo Hooo! As you can see she was pretty proud of herself. (see that bright white garage door? That's how far she went!)

All the walking was exhausting. A little nap before dinner!

"I am fearfully and wonderfully made!" psalm 139:14

Anna Banana

I can't remember the last time I posted about Annie's GI issues so if I repeat myself bear with me.... Soo all of Annie's biopsy's came back perfectly normal, even the duodenal modules. Needless to say I was in tears. I just wanted to find something so that we could fix it already and take Annie's pain away. The GI doc and I spent some time on the phone trying to decide what to do next, we went through a couple scenario's and decided that before going any further we should rule out the possibility of the pain being a side effect of one of the many GI meds she is on (prevacid has a side effect of extreme stomach pain although it is very rare). Sooo we pulled her off all her GI meds with the understanding that our doc was on call on weekend and would be reachable if we needed him. Low and behold we found our culprit! It looks as though her prevacid (reflux med) was the cause of the pain. We are thrilled that we found the problem and even more excited that we have now dropped 3 meds (we had added meds to stop the stomach pain which clearly weren't working). At some point we will probably have to start a reflux med but at this point Annie has been feeling so good now that the pain is gone that she doesn't seem to be bothered at all by the reflux.

Sweet Annie also had her 6-month cardiologist apt. and ECG. What we are looking for is the possibility of Annie developing prolonged QT wave. Annie's beautiful heart is health and strong, her QT is in normal limits and the cardiologist wasn't even able to hear her murmur!

Dealing with Rett is such a rollercoaster of emotions. Today I am so thankful and so full of joy that my Annie is feeling better. Her smile keeps me going, I feel like I can breath again!

April is Autism Awareness Month!

April is just around the corner which means Autism Awareness Month! The signature event of Girl Power 2 Cure is called Dress Up 2 Cure and our family has signed up as Team Annie this year for this awesome fundraiser!! The economy has been rough this year, especially here in Michigan but this year more than ever is when we need your help. Researchers are getting closer and closer to a cure for rett syndrome but we can't let that research slow down. Do you want to help us? There are countless ways of getting involved, as simple as a blog/facebook post, maybe an email out to friends? Maybe you want to get more involved - a casual day at your office? A Dress Up 2 Cure event at your childs school? Maybe you can save your change for the month of April and donate it to Team Annie! Maybe you could make a quick donation today! Help us in the fight to get our Annie back! One day soon she will be able to thank you herself, until that day our family is so grateful for your support!

If you are a Rett Syndrome family and want to join in the FUN and register your own team, check out our Dress Up 2 Cure site to learn more and sign up today! (In case you need more incentive...there will be some amazing prizes this year for participants and top fund raisers...YAY!!!!)

R and R

February was, well, a rough month for us over here in the MacDonald household so my wonderful husband told us to pack up because we needed a little time away for some fun and a little Rest and Relaxation! All 3 kids loved Kalahari when we went last summer so we knew that we wanted to do a water park but we didn't want to go to far and we didn't want to spend a fortune so we decided to head to Zehnders Splash Village in Frankenmouth on Sunday (the kids don't have school Tues. and playing "hooky" in preschool and kindergarten is sometimes a good thing!). The kids had a blast, we got there early and were able to get checked in right away and head to the indoor waterpark.

Then off to the famous Frankenmouth Chicken dinner, a little arcade time and then resting with a movie. Monday morning we woke up, had breakfast and hit the waterpark again then walked around the cute downtown area because it was soooo beautiful today! Needless to say we were all exhausted by this afternoon.

The kids all fell asleep on the quick trip home and we were back for James' karate this evening. A short trip but nice and a reminder to us that with all we have going on we need to take some time out to just have fun together.

Annie seems to be relieved that we are back home. She had a lot of fun in the waterpark (man I wish I had a "camera guy" that could snap pictures of the kiddo's when my hands are full - we could've had some great shots!) but everything else she was not so thrilled about. Lots of crying and very little that we could do to calm her.

It's frustrating that she couldn't relax and enjoy while we were away but hopefully now that she's back in her element she'll have a great rest of the week!

End the "R" Word

Have you ever said "I'm so retarded" or "this class is so retarded"? If you have chances are you weren't thinking about how painful your words are to people with different abilities. I know that I have overheard this word in restaurants and at the mall and each time I hear it my heart breaks and all I can think of is my sweet Annie and how much I want to protect her from hateful words. End the R-word Day, March 3rd, is an awareness effort day to “spread the word to end the word.” The idea is to eliminate the derogatory use of the "r" word from everyday speech and to teach acceptance and inclusion of those who are different. Check out www.r-word.org for more information.
In addition I just have to add that recently a show called "the Family Guy" has made fun of and mocked someone with down syndrome. I have never actually watched this show, I've seen commercials and find it rediculously offensive but with the recent show that they have aired they've no doubt crossed the line. I hope that anyone who has previously been a viewer will see their hateful nature and boycott the show. There is NO place for a TV show to put down an entire class of people that are unable to fight back.