Back from the VMR

Well, we are back from Annies 23 hour VMR. This is a routine test that we do annually since there is such a high incidence of seizures with rett syndrome but we were also concerned because we have recently seen some "episodes" that look like they may be seizures. Unfortunatly we didn't capture any of these "episodes" at the VMR but fortunatly there have only been a couple of times that we have seen it. We will recieve the results in a couple of weeks. Annie did great! The set up of the electrodes takes a little over an hour. They have to wrap Annie up in blankets to make sure that she stays very still while they glue all the electrodes to her head - we called her a burrito! After that they bring us to a room where they attach the electrodes to control box and then position the camera to Annie and that's it. We sit and relax for 23 hour. It's tough because Annie is essentially confined to the bed but we were able to get her onto her feet at the side of the bed and we kept her engaged with movies, books, toys and of course flash cards because anytime is a good time for learning! Here's a picture of our little trooper! We'll keep posted on the results.

Research Breakthrough!

Please read the exciting new research and the possiblitly of a novel therapeutic in the future. Then pray that the Lord would guide the hands and thoughts of our talented researchers. Rett will be the first treatable neurological condition. Our hope endures!
http://rettsyndrome.wordpress.com/

Music Therapy!

Annie had her music therapy session today and she did GREAT! She was crabby on the drive there but completely turned it around! Annie and her therapist played with tons of different instruments and Annie was so responsive. She was grabbing things and choosing what to play with not only with her eyes but her hands too - she even hit the tamboreen 4 times in a row! I think we may have a musical prodigy on our hands! Annie smiled the whole time and couldn'g stop giggling when we were packing up to go home. We had so much fun!

Annie loving the ocean drum

Annie playing with the hand drum

Annie enjoying "Old MacDonald"

Fast asleep after so much fun!

Annie with the therapy dogs!

As promised here are some pictures of Annie with the therapy dogs that she spends time with on Wednesdays. There are 2 dogs and they are HUGE! Well over 100 pounds. They take turns on Wednesdays - sometimes it's Lucy, sometimes it's Annabelle - Annie loves them both and both dogs equally love little Annie.

Weekend!

Well it was quite a weekend for us. On Friday Annie had a dentist appointment. She didn't enjoy it very much but James and Grace sure did. Our pediatric dentist is great, the kids always get to play games while they are there and they leave with a bag of goodies!

Annie grinds her teeth like crazy so to combat this we give her a pacifier, it seems to help and also seems to be very soothing for her. Unfortunatly she is 4 years old and at this point it should be a thing of the past. Our concern was if we took it away would her grinding wear down her teeth too much. Our dentist informed us that Annie now has a slight crossbite so if we don't want to damage her jaw we need to toss the pacifier. I'm not ready for the sleepless nights yet so we may wait for a few more weeks.

Saturday Annie had music therapy at the Far Conservatory. She's been taking music therapy for about 6 weeks now and seems to enjoy it. I think her favorite part is when her teacher plays the guitar for her and sings. We'll be sure to take the camera next week. James has gymnastics on Saturdays as well. He's been going for a few weeks and absolutly loves it. Here's some pics of him in action!

Little Gracie has to go along for the ride until next year when we'll be putting her in dance class (or acting lessons!). Saturday night we had a blast celebrating Valentines Day with our family. Thanks Jeremy and Jen for yet another great party!

And here's a quick pic of Annie using her walker right before she went to school for her Valentines Day party! My pretty little Valentine!

New Stroller

Yesterday we picked up Annie's new special needs stroller. This was definatly NOT the happiest day of my life. One of the hardest things for me in dealing with rett syndrome is the medical equipment (which is funny because we certainly have enough of it!). I can always get lost in the day to day stuff, somehow just making it a routine and in our busyness I just "forget" that I have a daughter with such high needs. The equipment somehow makes it real, not only to me but to everyone else around. I'm sure in time we'll come to love the stroller, its easier to handle than our other one, lighter weight, more durable, and definatly more supportive for Annie. I also remind myself that this is temperary. One day Annie WILL walk and run and have no need for a stroller or a wheelchair at all. I think Annie knew that I was having a rough time with the new equipment she just stared at me right in the eyes all afternoon and smiled as if to say "It's OK mom, its only for a little while". What an amazing daughter I have. To deal with so much and still be able to comfort her mommy. I am blessed. Here's Annie being fitted for her new stroller. As you can see she is soooo thrilled that it's PINK! James told her that she has a "hot new ride"! That made her smile too.

Daddy Daughter Date Night!

Scott and Annie enjoyed an evening of dancing and music tonight at the daddy daughter date night. This night is for girls 4 and up (Gracie will go in a couple of years) so Annie gets daddy all to herself tonight and in case you couldn't tell from the pictures she's loving every minute of it!! What an amazing dad for a special little angel. Annie had such a great time tonight. She said "da-da" twice when I asked her about her night! My cup overflows!

On a seperate note. Annie was at the opthamologist today and got a glowing report! She has great vision and strong eye muscles! Yay!

Working Weekend!

Rett Syndrome never takes a day off and neither does our little Annie! Even on Weekends she has to work, work, work. tonight we worked on crawling. This is frustrating. Annie didn't learn how to crawl until she was 16 months old but then regression hit and it was taken away. We work so hard on walking but we always remind ourselves that you must crawl before you can walk. Annie's doing great with her 4 point - she can hold herself in position for forever now! But moving those limbs is really tough. To motivate our little champion, James decided to spread out some textured clothes that Grammy bought. He made a "track" for Annie to practice on.


Of course after Annie made it around the "track" it was James and Gracie's turn to race around together.

Wednesdays

On Wednesdays Annie starts out her day with private OT therapy through Beaumont. We have been working with the same OT since before Annie's diagnosis - almost 3 years now. Mr. Andy is wonderful. He loves Annie and always seems to come up with something new. After OT we rush home, have lunch and then it's off to school. James gets dropped off first then Annie. In the afternoon Annie gets picked up by Grammy who brings her home for a quick nap, dinner, then off to see the therapy dogs at the library. Wednesdays are busy for little miss Annie but she LOVES them! I'll be sure to post pics of Annie with the dogs but here are some of her OT session with Mr. Andy!

Since Annie is out for the evening on Wednesdays mom gets a little break by having only 2 little ones instead of 3. This gives me some time to do crafts. This Wed. we did handprints and then painted them. James and Grace have a blast together and love the attention. Plus they get to pick dinner for the night which usually is dino chicken nuggets, tater tots and fruit. They're great kids, they deserve it!!!

Welcome!

Thanks for visiting our new Blog dedicated to our family and our quest for a cure to rett syndrome. Come back often for updates on the MacDonald family. Our last post on Caring Bridge talked about Annie's new room. For those who didn't follow our Caring Bridge site our sweet Annie got a completely new room over the holiday season. We tore up her carpet and layed dark wood flooring, painted the walls pink (her favorite color) got some new curtains, new bedding, a new (more energy efficient) window, the works! She's so worth it! Here are some pics of the new room. Annie loves it! She snuggles in at night under the fuzzy covers and mom and dad love the easy clean up of the hard wood floors! Gracie loves to sit on the fuzzy carpet and plays "nurse" at night when we get Annie's tube feedings set up.