Richie Hebner!

Today at school Meredith got to meet Richie Hebner. He was a third baseman for the Pirates. He is the father of the teacher in Meredith's inclusion class. If you look closely at the picture, you can she she got to try on his shiny '94 Toronto Blue Jays World Series Championship ring!!

Polar Express!

Today we went on a Polar Express train ride to the North Pole! Which, in case you did not know, has relocated to the Readville train station : ) The event benefited Saint Catherine of Siena School and was organized by a mom we met recently at a couple Rett Syndrome functions, Paula Curly - an awesome mom who does so much for Rett Sydrome and is just an inspiration. One plus of an event organized by a Rett mommy is that they had a special needs friendly car. We left Norwood Central at 12:30 and went on a 50 minute train ride where the conductor read the Polar Express book to all the kids and we got to see Santa's elves. Meredith was given a bell, candy cane and cookie and she tried hot chocolate for the first time. We saw frosty the snowman and then Santa himself made an appearance. It was a lot of fun and we got to see a few of the new friends we have made in the Rett community. A great way to end our long Thanksgiving weekend and kickoff the holiday season!

Wonder Woman at last!

Last year Meredith was in the hospital over Halloween so she never got to be Wonder Woman as planned. So it's been a long time a coming, but at last Wonder Woman made her appearance this Halloween.

Rett research moving forward

More great stuff happening with Rett research.

http://www.uab.edu/news/latest/item/1850-uab-researchers-seek-to-reverse-rett-syndrome-in-children

Boston Marathon 2012 - Support Team Rett!

I will be running the upcoming Boston Marathon to raise money and awareness for Rett Syndrome. Here is the link to my fundraising page where you can see a short video that tells Meredith's story and allows you the opportunity to donate if you wish. Thank you so much!!

http://www.crowdrise.com/meredithlewis

Thank you Steve Jobs

As a long-time Apple fan, I instantly fell in love with the ipad as a toy that allowed me to cruise around online, read and play games. I had no idea when I first got it how beneficial it could potentially be for Meredith. We are beginning to explore various apps that hopefully will one day help Meredith communicate. Therapists are finding this to be an amazing tool for tapping into the minds of non-verbal kids. We are starting with very simple concepts - when she touches the screen, something happens. Here is an interesting 60 Minutes segment that shows how it works. I love the bit about the little boy who they discovered loved opera. Who knew!? These kids have ideas and thoughts and feelings in there - it's just a matter of getting them out.

Inclusion Gym Class

Today school sent home a few pictures from Inclusion Gym Class. MerBear made Dad proud today as she played soccer for the first time! There are a few little girls in the class that know how much Meredith likes things that sparkle or shine. So on the days they know they will see her, they wear shirts with sparkles. I thought that was just about the cutest thing ever. Here's a pic of Mer with one of her buddies and with her gym teacher.

Blue Sky Event

Today we attended our first official Rett Syndrome Event - the Blue Sky Event at Harvard Medical in Boston. Greg is in China for work but Meredith and I went and we brought Grandma too! It was a great day and we had the opportunity to meet many other Massachusetts Rett families. Dr. Khwaja was there as well as several of the researchers working on finding a cure. Each of the children climbed the stairs to symbolize their strength and perseverance. After the kids climbed, Dr. Khwaja and the researchers climbed too. It was an amazing day. The second picture is Meredith and I with my marathon buddy Jeanne and her beautiful daughter Charlotte.

Rett on The View

Again - this is Typical Rett (not Variant), but great exposure for Rett Syndrome in general. Meredith's kind of Rett is distinguished from this kind because she never had the period of normal development these parents describe and her mutation is to the FOXG1 gene, not MECP2.

Rett Syndrome on The View - January 2011 from RSRT on Vimeo.

Great Video that explains the Rett Reversal in Mice

Kind of sciency, but if you are interested in hearing someone who knows what they are talking about explain the experiment, here it is! This explains the very exciting experiment that was done where Dr. Bird was able to reverse the sypmtoms of Rett Syndrome in mice. MECP2 is the gene linked to Typical Rett. But this science is still exciting for kids with a FOXG1 mutation (Atypical Rett) because the findings indicate that a similar approach could be taken with the FOXG1 gene.

Understanding the Rett Syndrome Reversal Experiment from RSRT on Vimeo.

Test Driving a Gait Trainer!

This week Meredith got to trial a gait trainer at Children's Hospital. It's kind of like a walker with lots of support. We ordered her one and it will take about 3 months to arrive - we are so excited! It's a Rifton Pacer like this one, but a newer looking model and a snazzy lime green color.

There is a seat and a snug support around her torso. The idea is to get her her legs to start making the walking motion. Hopefully with time, she'll learn to tool around in her little walker on her own. It was so nice to see her in the standing position and still be able to move her around her legs. Also, this is something we can use barefoot, which is just nice. No AFO's and sneakers - au natural : ) She seemed to like having her feet on the ground and overall was very happy being in it. She kept kicking her left leg out like a little kickstand and seemed to like putting her hand on the handle bar. We weren't sure a gait trainer would offer Meredith enough support, I pictured her being too floppy. But seeing her in this was really encouraging - think she might really take to this! She loves to move around, she just has no control over her movements. So this gives her the stability she needs while still allowing her to move. It was awesome and we can't wait for her's to arrive.

Pix from School

Uh oh. Looks as if Meredith has inherited her mother's relaxed approach to school. They sent home this note/photo today. The other shot is showing a neat swing adaptation that they use in many different configurations during physical therapy.

We have a diagnosis

After 3 solid years of searching for a diagnosis, last Friday, August 19th, genetic testing confirmed that Meredith has Variant Rett Syndrome due to a FOXG1 mutation. It's still settling in since we had pretty much come to terms with the idea that we would never get an answer. It's strange and surreal to think that the hunt is over, but we take great comfort in knowing what we are up against. Today we met with a Rett Syndrome pioneer, Dr. Khwaja, who is the Director of the Rett Clinic at Childrens' Hospital. He confirmed Meredith's diagnosis and told us he thinks in the coming years, it will become known as FOXG1 Syndrome, instead of Variant Rett. The FOXG1 gene was identified in 1994 and only linked to Variant Rett in 2008. Khwaja expects increased focus on FOXG1 as a result of the recent discovery and we hope this provides more information or even treatment for kids with this form of Variant Rett. To give you an idea of it's rarity, Meredith is only the third child Dr. Khwaja has ever diagnosed with a FOXG1 mutation.

With typical Rett Syndrome, kids have a period of normal development and then hit a point where they begin to regress. There are a few different kinds of Variant Rett, but with Congential Rett (meaning from birth) kids never have that period of normal development.

The FOXG1 gene tells the body how to make certain proteins important for brain development and growth and Meredith has a truncated gene. He said Meredith's exact mutation has never before been documented, but from the looks of it she falls into the "moderate to severe" presentation of the syndrome. He gave us a lot of information and the majority of it was actually good! Here are a few of the highlights:
1. NO REGRESSION - woohoo!!!! Meredith should continue on her leisurly path of development and make small gains. She won't lose the skills she has acquired.
2. This is a spontaneous defect that happened in development, so there is no need for Greg or I to be tested and no reason for us to think we passed this along to her.
3. Around the age of 10, many kids see a decrease in seizure activity. In some kids, they go away completely.
4. Walking/moving around is still on Meredith's wish list!! He said the biggest obstacle with FOXG1 kids is the ultra-low muscle tone. But with continued therapies, stander time (and he wants her using a gait trainer), she can make substantial gains in this area. Some kids do eventually learn to walk, but not until very late, age 8 or 9. We were given a script for 2 vitamins that can help with the growth and maintenance of muscle tissues to help with Mer's low tone: L-Carnitine and Ubiquinone. We are excited to get her going on these asap!
5. Nearly all kids are non-verbal. Not great news, but there are so many other forms of communication we can focus on and of all the losses we have mourned with Meredith's development, for some reason this one falls to the bottom of the list. Plus, having a husband who jabbers enough jibberish in the household for 5 three years olds gives us our fill : )
6. Meredith's life expectancy is about 40 years which we've been told should continue to be happy and healthy.
7. He recommended getting another MRI to get a better look at Meredith's brain since her last one was done at 9 months when the brain is still mostly water. This could provide more clues on her overall development moving forward.
8. There is a slight risk as kids get older of developing an irregular heart beat so we repeated an EKG to keep an eye on that. It's actually only documented in typical Rett, but we'll keep an eye on it as a matter of course. If it were to develop, it can be easily treated with medication.

There is amazing research being done right now on Rett and scientists have actually been able to reverse the symptoms in mice. We asked Khwaja if this is something we can be excited about for Meredith even though she has Variant Rett. He said they are working on creating a FOXG1 mouse now : ) We have high hopes for the future discoveries that will be made. Here is a link I found especially fascinating that explains the mouse study. Meredith was also asked to participate in a medical study - readily accepted with a squeak and a giggle - which will help promote additional advancements in the field.

This diagnosis and the appointment today has provided Greg and I much closure when it comes to this journey. We both agreed today that when we came home, we felt as if we had finished a perpetual Iron Man and we could finally sit down. We can move forward with our lives and most importantly continue to provide Meredith every opportunity to thrive, knowing that the gains she makes are hers to keep.

Soul Sisters

Almost exactly a year ago, I was lucky enough to be found online by a mom who had seen Meredith's blog and who's daughter shared many of the same symptoms. We started trading emails and phone calls and quickly learned that our girls had a LOT in common : ) Given Meredith's unique assortment of symptoms, this was really something special. Amy is the first mom I connected with on this journey who's child was going through pretty much the exact same unique experience as ours. Knowing Amy and Mark were out there somewhere was extremely comforting to us - there was another couple somewhere in the world who did understand! As I learned more about their daughter Olivia, I just could not believe all the similarities. We don't exactly live nearby, but close enough so that with a little planning and a road trip on both sides, we thought it would be possible to actually meet. Well we met last Friday in Lancaster, PA and it was truly an amazing experience. To sit and talk with another couple who is going through the exact same complicated journey as we are was just mind blowing and extremely therapeutic. Greg loved the opportunity to talk with another Dad who could relate and both Greg and I truly feel we made some new friends this weekend. We toured Amish Country and spent a few hours at Kitchen Kettle Village in Intercourse, PA. Meredith had her first pony ride care of Chloe the speedy pony. We ate some delicious PA soft pretzels and had a lovely dinner out at the Stockyard Inn. We enjoyed so much every second of our visit with Amy, Mark, Olivia and little sis Emily. Thank you guys for everything...

High Low Base arrives

We are loving Meredith's new wheelchair, the Stingray. She gets buckled in in the morning and wheeled right onto the bus where they lock down the wheels just like a wheelchair. It's crash-tested so it acts as a carseat and wheelchair in one. We also ordered a base so we can pop the chair piece off the wheelchair and snap it onto this base for indoor use. This way we can raise and lower her to the appropriate height for all kinds of activities. It's been very handy and is really easy to use. It's great to have another seating option for her since she's just about outgrown the other infant-style chairs we have. Now we have this and the one you can see in the background, her pink chair made by Perkins.

Field Trip to watch the Patriots Practice

Meredith was fortunate enough to catch a glimpse of Tom Brady on Friday as the team warmed up for the season at Patriot Place. Meredith got her first autograph - Steve Ridley #37! Following practice, the class moved on to see a bubble and music show that was also at Patriot Place that day. I'm told Mer had a blast and loved the music. Greg joined the class for the Patriots part since he was dropping Meredith off late (she had her genetic testing that morning). I think he had as much fun on the field trip as the kids!

3 year check-up

July is wrapping up and it has been a great summer so far. I haven't posted in a few weeks, mostly because it has been relatively quiet. We spent a day at Martha's Vineyard visiting Gramma and Budda, Auntie Amy and Uncle Chris which was a wonderful day. Mer got to ride the Flying Horses, she went to a fair with Budda and painted a seashell and decorated a cupcake while Greg and I went with Chris to Menemsha to fish and hit The Bite for some chowder. We had a great time and it was a nice visit. Meredith has been doing very well in school and seems to really be loving it there. They are busy with activities and field trips. They swim and play in water at least a couple times a week. Meredith is always coming home with neat prizes from their projects; tie-dye T-shirt, a "lava lamp" the kids made for 70's week, an ice cube necklace, a flower wreath for her hair, cookies, etc.

Meredith has only had a handful of seizures this summer. All single seizures, no clusters. It's amazing. She has probably had a total of 4 in the last couple months, which for her, is just incredible. Her eye contact continues to improve which we are loving. She had her 3 year checkup this past week and weighed in at 28 pounds 3 oz. and 35 inches long. Her weight is no longer a concern which is nice, she's back up to a healthy weight. She's 20th percentile for weight, 5th percentile for height and still not on the charts for head circumference.

Developmentally, we are focusing more on communication and interaction. We have introduced the next level of switch play with Meredith. There are lots of websites and apps you can use with a switch on your laptop or ipad to play computer games. When she hits the switch, something squeaks, beeps, jumps, etc. She does great with it! She's definitely understanding now that when she hits that switch, she's making something happen. We also use flashcards to help teach her how to communicate with us and teach her how to make choices using eye gaze. We use yes/no cards and flashcards. "Do you want this? Yes or No?" We show her both cards and whichever she sets her gaze on, we go with that. We also use flashcards with pictures of familar objects and activities. This is mostly to help her make choices and help her anticipate what's going to happen next. "Would you like milk or banana?" We'll show her a picture of her tub and tell her, "we're going to take a tub now Meredith". "Do you want to play with Elmo or with the mylar?" You get the idea : ) Gross motor is still a struggle, but she does seem to be getting stronger. She's still can't sit independently or feed herself, but we're working on both. We desperatley want to get her off the bottle and are trying to train her onto a straw. We have not had much success here yet. She moves a ton and kicks around and flails her arms around, but there's not much control to her movements.

The other big development with us is that genetic testing is back on the table. At Meredith's last appointment with her Neuro, he mentioned that he'd like us to go meet with the Rett Specialists at Children's Hospital. Meredith has had genetic testing for both Rett and Atypical Rett and both came back negative. Clinically though, she seems to fit the profile for Atypical Rett. So we made our appointment (not until October) to go see those guys are are preparing ourselves for a possible clinical diagnosis. In the meantime we started googling around again on Atypical Rett and discovered that there is brand new science and testing being done on 2 genes specifically linked to Atypical Rett. We got in touch with the geneticist and they confirmed that Meredith has not had those 2 specific genes tested. So we quickly got the ball rolling with that, and she had blood drawn to test the FOXG1 and TCF4 genes. We don't know when to expect results, but the testing (which is only done in 3 places in the country) is being done right at BU, so hopefully it won't take too long. Somehow this time around it doesn't feel as scary doing these tests. I think we've just been at this a little longer now, and at this point all it would really change are 3 things: we could officially stop the hunt for a diagnosis which would just be nice, a diagnosis could potentially answer the question about whether this is a fluke that just happened or if either Greg or I are carriers of a gene, etc. and third, it would be a lot easier to explain to people what Meredith's condition is. It really wouldn't change much about our daily life at all. Well this post has turned into a real novel, if you've made it this far reading, you're probably ready for a nap. Signing off until next time where I'll post some pix of Mer's second field trip to Patriot Place to watch Tom Brady throw some practice touchdowns : )

Meredith Goes on a Field Trip

Two weeks ago, Meredith's class went on their first field trip. They went to Patriot Place in Foxboro and went to the movies! Mer saw her first movie - Mr. Popper's Penguins. She's wearing the tie dye shirt she made at school during 60's week.

John and Matt visit from CA!

Wednesday morning my two brothers arrived from California for a much anticipated week long visit. We spent a lot of time together and even got to have a little sleepover with cousin Graham while John and Jackie met up with friends. Check out the pic of them snuggling during an Elmo movie. Having handy Uncle Matt around also meant we were able to get our swingset built - woohoo!! After a few days at home, we all headed to the Cape Friday night to continue the family vacation there. We visited with everybody, hit the local beach, went for a long bike ride, got the famous lobster roll at the Raw Bar, did a couple runs over to Popponesset Island and went to Nauset Beach and enjoyed the big waves. We celebrated birthdays for Matt and Dave, got in some good rounds of paddleball, played a little cards and played with snappers which always make me feel like a little kid. Family friends have a place nearby on the water and invited us over to watch the fireworks they do off their dock on Sunday. We were in for a treat!! These were no dinky fireworks - these were real deal, professional-style fireworks! It was really fun and they were kind enough to take us for a ride in the boat too. Thanks again Kathryn and Plato : ) It's been a great vacation so far. It's hot and sunny and Greg and I are enjoying our quiet time here now, just the 3 of us.

Meredith Aces Western Civ

The other night Meredith pulled one of her famous 100% sleepless nights. She did not sleep one wink. She wasn't upset or crying, but there was zero sleep happening. In the morning Greg sent her with a note in her backpack saying she pulled an all-nighter cramming for her Western Civ exam. In the afternoon, she came home with this. We love this school : )

A few pictures from School

First day of School!

Today is Meredith's birthday and it's also her first day of school! The bus just came and picked her up. Her driver Charles and the Aide Sandy were here right on time. They backed her up on the ramp into the van, buckled down her wheels on her new Stingray Stroller. We waved goodbye and off they went...
We had our last appointments with the Early Intervention crew last week. We will miss our therapists we have come to know and love very much. They have been a major part of our support system these last few years. Always making us feel like we had a place that we fit. It's a little scary to think of being without them, but we are very excited for Meredith to start school which has made this transition much easier. She is going to love school and being around all the children. The house is quiet and I know I'll be so curious about what she is doing every minute of the day. Here are a few pictures of her send off.

Mer turns 3!

Saturday we had a birthday party for Meredith at Southwick's Zoo. The day started out a little rainy, but ended up working out fine. It stopped raining by the time we were done with pizza, cake and presents at our "birthday pavillion" (which was covered) and then we were ready to hit the zoo - which as a result, was not crowded at all! We actually had the whole kiddie ride section to ourselves : ) It was a great memory and all the kids had fun stuffing their own animal and seeing all the other real animals. I was really bad about taking pictures - I think I have 4 from the whole day, but here are a couple...

The Funniest Cough

Jerry Seinfeld watch out.....looks like Mer Bear would pay top dollar to simply hear somebody cough on stage!! Sorry about the Mommy talk - it seems I have no control over this.

We found our school!

Meredith will be attending a classroom that is part of the local regional Bi-Co program at the Jordan-Jackson School in Mansfield. Or as we are having fun calling it - the Michael Jordan Michael Jackson School : ) We are so excited! The thing that stood out most to us about this school is the sincere warmth of the staff. It's was really a beautiful thing to see. We loved everybody we met there, most of all her teacher, Sara. We just clicked with the staff. We parked our car in the lot and started walking up to the entrance when a side door opened and a nice lady leaned out and said "you must be the Lewis family, I'm Sara, the Bi-Co teacher!" Before we even walked in the door, things were feeling good. It just felt like a warm comfy shoe being there. The space is HUGE with plenty of room for lots of equipment and group activities. It's clean, organized and feels established - it's been there since 1992. We met 4 of the other students, 3 girls and a boy, ages 5-7. Come fall, there will be 6 total students including Meredith. One girl ran up to Greg and gave him a hug. The children were really happy, lots of smiles and laughs. They were having circle time (with switches and a huge projected "movie"on a wall) when we showed up. Lots of clapping, laughing, singing - all things Meredith will adore. Meredith was full of smiles just watching the other kids have circle time. The staff was super attentive to Meredith, interacted with her a lot and showered her with lots of love and smiles, which us parents eat right up. It was clear they had read through all her reports and seemed quite familiar with what she's been up to. It's a 12-month program with a week off in August - so Meredith will be a busy lady! But since Greg and I work full time, this actually works quite well. She'll go to school 5 days a week and will be picked up at the house in a van or bus around 8:15 and she'll be dropped off at home around 3:15. There is a nurse in the classroom at all times and there are 3 aides. They have a big bathroom off the classroom where they work on potty training with all the kids - even if its just sitting on the potty for a few minutes each day to get used to it. They have nap time after lunch where kids can sleep, stretch out or just rest. We knew pretty much right away on our tour that this place was the winner, so we just came out and told them we wanted to send her here. They were thrilled and a couple of phone calls later, we are almost buttoned up. I feel really good about this transition to school mostly because I really think meredith is ready for it. She's ready for the interaction, the curriculum and all the learning. She's going to do great there! She should start right around her third birthday - June 13th : )

Saw our first school

Monday morning, we toured the first of the 2 collaborative programs we have to choose from for Meredith. This classroom is in Medfield at the Wheelock School. There are 3 other students in the class, Meredith would be the fourth. The teacher seemed great, we liked her a lot. She is very eager and enthusiatsic about the kids and the program. She was warm and friendly. There is a nurse in the classroom all day which is awesome, since all the other kids in the class have seizure disorders. This school would be about a 20-25 minute ride on the bus for Meredith and she would be picked up at 8am - which is good because this leaves me enough time to get to work by 9 without needing a morning sitter! I was a little surprised how much older the other kids were. There were 2 boys, both age 8 and one girl who is 6. They reminded us that since we are really focusing on developmental level here, the ages of the kids is slightly less important. Our coordinator keeps using the term "low incidence". Really driving home the fact that there just aren't many kids around with these kinds of needs. Makes sense, just wasn't what we expected. Since these classes can move from town to town depending on where the low incidence kids are, we liked that it really felt like a classroom - it didn't feel transient or temporary. We got to meet one of the boys on our visit. His name was CJ and he was really sweet. It's definitely a very low functioning class and I found myself looking around the classroom thinking - I can't believe this is where we "fit". It's crazy. Sometimes it's still a lot to wrap my head around. As much as I feel at peace with everything now, there are these moments that hit me like a truck where I still can't believe this is my life. Even though I love it and even though Meredith fills my life with more joy than I could have ever imagined. I still can't believe this. I wonder if that will ever go away. Overall, we liked the school and think Meredith would do just fine there. Since we have a choice, we are keeping our options open and are excited to see the other program to have something to compare it to. There seems to be mass confusion around where this other program actually is. It's moving and our coordinator isn't sure where or whats going on. So we'll go tour this other mystery class in its mystery location as soon as we can!

Meredith has been doing awesome. Happy, feeling good and full of smiles. She easily tolerates an hour and a half in her stander at a time now. We try to get her in there a couple times a day so she's getting 2-3 hours in there. You can really see the progress she's making with her vision and ability to focus on an object. You can actually see the coordination starting to develop while she watches her own hands while playing with toys - especially in the stander. We haven't seen her roll since November, hopefully that comes back again. And she still won't push up on her arms while on her belly. We work on that a lot since a little arm strength would go a long way for her! For example, she doesn't use her arms at all to stabilize herself when she's sitting, so she falls right over. Arms serve one purpose for Meredith - entertainment - because they have hands on the end of them! We've seen huge progress since we got her Dilantin levels straightened out, it's obvious she's feeling much better. We are loving all the watching she does now. Watches Greg and I everywhere we walk and follows us with her eyes or watches us while driving in the car. I love turning around in the car and seeing her looking right at us. Her favorite thing to watch is still her own hands, but now she looks at us and her environment so much more. Greg jokes that if he dressed up as the Hamburger Helper guy (giant hand) she'd be a lot more interested in us : ) She's still not sitting on her own or weight bearing on her feet without the stander but is definitely getting stronger. We saw a Physiatrist a couple weeks ago who told us to never give up hope - he has some kids he sees who didn't walk until age 8. It's still definitely a possibility for her, even if she always needs assistance with a gait trainer or walker. It could still happen!! We are not as hung up on this as we once were, but I'd be lying if I said I didn't REALLY want that one thing for her. We do. And hopefully someday it will happen for her : )

Sneak Peek of our Pix!

Our awesome photographer Melissa posted a few samples from our session to her blog so we could have a peek. Here they are, we can't wait to see the rest! Here's a link to Melissa's website in case you are local and love her work like we do : ) If you click on "enter blog", thats where she posted her Meredith pix.

Inspiration Through Art

A few months back, Meredith's PT Arlene told us about the Inspiration Through Art project. It's a great non-profit organization where local Photographers and Artists donate their services to our nation's little hero's free of charge. Meredith applied and was selected - woohoo! Tomorrow is her big day, she will be having her very own little photoshoot at our house! We are excited to meet our Photographer, Melissa, who will be coming over for the big event at 10am. Last night we ran out to get Meredith a proper haircut since I've been trimming her bangs since her last "real" haircut - and we all know how well home haircuts turn out : ) I will post some pictures from her shoot here once we get them so you can all see. Crossing my fingers for a happy, smiley, seizure-free morning so all goes smoothly! And I will try not to back-seat Art Direct, but no promises...

Our big IEP Meeting

Friday morning Greg and I brought Meredith to ECDC where we had our big IEP meeting. We were nervous because we were about to find out whether or not the Franklin special needs preschool felt they could accommodate Meredith. Also Meredith had 3 seizures early in the morning and needed Diastat. She has molars coming in and has been quite sleep deprived, so maybe that triggered them. Since Meredith had had Diastat, she slept soundly through our whole meeting. There were 13 people there including Greg and I. We sat around a big round table and discussed the results of Meredith's assessment. Then we put together some goals for her for the coming year - things like assisted feeding with a spoon and using technology to help Meredith communicate and make choices. After we were all in agreement on what areas should be worked on while Meredith is in school, we had the talk. They felt Meredith's needs would be best met at a bi-county collaborative program, not at ECDC. After talking through the reasons why, it became very clear that this would be a better fit for her. Franklin is part of 2 collaborative programs so we'll have our choice of 2 classes. One is in Foxboro and has 5 kids and the other is in Medfield and has 2 kids. One of the programs is actually moving to another town, but we don't know where yet. They have things like standers, seating devices, and most importantly - other children like Meredith! We are very excited to meet some other kids with similar needs and their parents. Now we wait for a call from the out-of-district coordinator who will arrange for us to tour both schools and then we'll make our choice. Meredith was approved for a full day program, 5 days a week, which is great. The town will provide transportation to and from the school and she'll have an aide on the bus with her in case she has a seizure. We are very excited and feel great about the bi-co programs. We are also relieved to have the meeting behind us and to have an idea what will be happening in the coming months. So Friday was a really good day overall even though we were battling seizures. They continued into Friday night and Saturday and Meredith needed Diastat 3 times. The last seizure she had was Saturday at 3am and she's been clear since then. Which was great because we wanted to go to cousin Ellie's 3rd birthday party yesterday and since Mer was in good shape by then, we could!!! We had a lot of fun celebrating Ellie's big day and seeing everybody. I got to put a tony-pail in Ellie's hair and play golf and football with Daniel. We are enjoying the warm weather so much and spending as much time outside as we can. Sunshine feels so good. I'm still savoring every second after that loooong winter : )

Meredith enjoying her Easter basket prizes

Happy Easter!

Today is Easter Sunday and we just got home from a great weekend at the Cape. Meredith has had an amazing weekend and we are savoring every second. No seizures in 2 weeks and we just received the great news that her liver enzymes are normal. When we discovered her Dilantin levels were toxic, we were also informed that her liver enzymes were high, meaning the toxicity was affecting her liver. She's on a more moderate dose now and doing beautifully, but we needed to retest to after 2 weeks to make sure the liver enzymes went back to normal. Otherwise she would have to come off Dilantin immediately and who knows what that would mean for seizure control. So we were happy to start our weekend with the good news that her liver is perfectly normal.

Last week Meredith was super irritable and hardly sleeping at all. She would cry and whine through most of the night and nothing seemed to help. We finally went to the doctor Friday to see if she had an ear infection. Turns out she's got 2 huge molars coming in on the top. Once we discovered that, we were able to better treat her with generous globs of orajel : ) That helped a lot, and finally on Friday night we all got a much needed good nights sleep.

Greg and I have made a lot of progress with our general outlook on things and feel like we are transitioning to the next chapter with all of this. We have not only accepted what is, but are beginning to truly embrace the beauty of the situation. Special needs or otherwise, Meredith is without question the happiest person I have ever met in my life. The simplest things put a HUGE smile on her face and get her belly laughing. Clinking a spoon against a bowl gets a smile almost every time and lately coughing will send her into near hysterics. She demands so little and has filled our lives with such joy. Her differences have been a challenge for Greg and I to adapt to, but she has always been happy. We are more at peace now with the occasional stares and glances and comments. All the well-meaning remarks from strangers that feel like bee stings. "Oh terrible two's.... she must be getting into everything!!!" People looking at us in a restaurant wondering why such a big baby is still drinking from a bottle. Or the quick expression from the hostess who wonders why we decline a high chair - she can't sit in them without flopping over. The friendly administrative lady who offers Meredith a sticker that she pays absolutely no attention to because she's busy looking at her hands and making funny grunting sounds. And then there's the countless number of things people don't say to us because they don't want us to feel bad. I realized this last week when my friend joyfully told me her daughter crawled for the first time. I was so happy for her. I realized then that people don't tell us things like that because they think it will make us feel bad. It actually felt good. Made me feel normal.

They say having a special needs child forces the parents to go through a mourning process. You mourn the loss of the child you didn't have. The child that was supposed to walk and crawl and feed themselves and call you mama and dada. They were supposed to get into everything and you were supposed to baby proof your house. They were supposed to test you and act out and you were supposed to discipline and teach. They were supposed to eat sand and put toys in their diapers and we find them and laugh. We will live a different kind of life. And in many ways this is quite a beautiful and liberating acknowledgment. There are no expectations for Meredith or for us as a family on what our accomplishments should be or what our future should look like. We are officially in unchartered territory and feel like we have just recently arrived at the point where we threw out the map and are just letting the road take us along. When you are in an atypical situation like this sometimes the map just reminds you of all the places you aren't.

Mer Playing With Her Switch

Switches are likely to be a big part of Meredith's learning. This one is a big, huge red button that you can connect to anything electric. This is connected to an aquarium that lights up and rotates. When she presses the button, it makes it go. You could connect it to a lamp and it would turn off and on when the button is pressed. The button is easy for her to see and it can be adapted to any electric toys or objects to help Meredith learn cause and effect.

Dilantin levels toxic

Well, we finally have an explanation for all Meredith's nausea this winter. Her recent blood draw revealed that the levels of one of the drugs she's on - Dilantin - are way too high. Toxic is actually the word the doctor used. A healthy theraputic level of this drug is between 10 and 20. Meredith was at 51! She had a couple stomach bugs this winter where she couldn't keep anything down and she's definitely lost some weight. That coupled with a dose too high resulted in there being way too much of this drug in her system. She's been getting blood drawn every few weeks to check the drug levels in her blood since we have been increasing Lamictal and are now at her final dose - 75mg 2x/day. We were upset when we discovered that at none of the recent blood draws had they also been checking the dilantin levels. The last time they were checked was in November where her level was 9. So we feel horrible that poor Mer has probably felt awful all winter long, but at least we know what's happening now so we can fix it. She took a few days off of the Dilantin to let the level drop down and is now back on it at a much lower dose. She'll likely come off it alltogether soon and just be on Lamictal. Already, we can see she's feeling much better and has been enjoying eating again instead of us trying to wrestle food into her. Which is good since she's only 22 pounds 10 ounces! She really needs to put on a bit of weight. New favorite food is vanilla pudding so maybe that will help us : ) Still doing beautifully on the seizure front and has only had ONE seizure in about 6 weeks. We can't even believe it.

Transition to School

It seems impossible to believe, but we are beginning the process of transitioning Meredith into the school system. We had our first meeting with the school last week when they came to our house to meet Meredith. Early Intervention services stop promptly on her third birthday (June 13th) at which point all her therapies will transition to the school system. Franklin has a public special needs preschool that has a lottery system for typical kids. It's called ECDC - Early Childhood Development Center. It has a great reputation and I've been reassured many times by her therapists that they have a great program, staff and therapists. So this is where we assumed she would go. I thought this initial meeting was to discuss her transition to the school, but like every experience we've had so far with Meredith, this one also delivered a few curveballs. It turns out this meeting was the first of a few that will take place to determine if ECDC is going to be able to accommodate Meredith. If they/we don't feel ECDC is going to be the best environment for her, they have someone who can help us find a good fit in another district. It was all a bit overwhelming and we left with a new label that makes my heart sink a bit: non-ambulatory. Apparently ECDC does not currently have any other students that are non-ambulatory. They don't have standers or any equipment that Meredith would need (though they would get it if it's determined that that's the place for her) but it was a little shocking to me to hear that there are no other kids like Meredith in the school - a special needs school. I left feeling like we need to start seeing some schools and programs right away. The first program we will go see is this one at ECDC. After that, we'll investigate other options just to see how they compare. The next thing that happens is the school system does an assessment of Meredith's development and then we all meet (whichever EI people we'd like present, the parents and the school system) to discuss placement and IEP. That meeting is scheduled for April 29th, so we have a bit of time. I love the idea of Mer being in an environment with a few kids that have somewhat similar needs. And I worry about her being with kids that are all "ambulatory" but have other needs that result in them being more aggressive since she's so completely defenseless. I know we'll figure it out - we're just going to need to do some work to get there.
Mer seems to be getting better now from another stomach flu, she's had a really rough winter with illness. Have I mentioned I'm ready for spring!?

Ear tubes and a new fancy chair

As a result of the many, many ear infections Meredith has had, she had ear tubes put in yesterday. Honestly, it was a piece of cake and Meredith was a champ, as always. It only took about 10 minutes and then Mer was awake again, and back to smiling away. The hardest part was getting up early enough to be at the hospital at 6:30am on a freezing cold, snowy morning : )

January has been a funny month for us. Overall, Meredith has been quite sick. She had 3 back-to-back stomach bugs, a staph infection and has lost 3 pounds. But despite her frequent illnesses, her seizures have remained under control. So while it's upsetting that her weight has dropped way off and she's felt awful, we just cannot believe how well she has been doing on her new medication. We are just bursting with joy and relief. Especially since in the past, illness always had triggered seizures. Had we not stumbled across this Lamictal and Dilantin now, I'm sure we would have spent a good amount of time in the hospital this month.

With the seizures at bay, we have noticed a lot of improvement with Meredith's vision and her ability to focus. She watches her hands now when she's playing with a toy, really watching and processing what she's doing. And the increased eye contact and smiles is enough to melt your heart into a giant puddle. Now that Meredith is well, we are back to our rigorous therapy schedule and working on getting her back up to her fighting weight. We are still doing PT 2x/week, OT 1x/week, ST 1x/week and Vision Therapy 2x/month. Perkins School for the blind made a chair for Meredith that Linda Collins brought over for us on Friday. It's the greatest thing, made of durable, lightweight cardboard, so it doesn't weigh a ton and Meredith sits really well in it!

Clever Dad

Display of pillows came in handy in helping Mer take her first ride in a shopping cart.

Anonymous Letter

Dear Snarfy,

I have never sent a letter to a superhero so please read. Firstly, where did you get your powers? The ability to endure a spinal tap with a giggle and a squeak is kick ass! I have difficulty mowing the lawn without bawling. The power to listen and smile while people hold you and blabber?? Helen Keller had better listening skills than me. Being okay with having to work out three times a day!!! I get bloody stools about having to drag my lard ass to the gym twice a week!! That poor treadmill. I know it cries every time it sees my redwood thighs lumber through the doors. Happily going to ten doctor appointments a month. I bitch about having one a year. I have been following your blog closely and I think you are absolutely phenomenal. Your Dad seems like a bit of a handful but I am sure you are extremely patient with him. I just wanted to let you know that you are the reason I believe in superheroes. Life would be so boring without you. I also appreciate your humility. Personally, I think Batman's bat mobile is way over the top. Your understated, yet stylish yellow stander is a far less pretentious mode of transport. And Wonder Woman's red stripper boots have nothing on your classy blue and purple spotted AFO's. Now when I mow the lawn, I smile. Now when I meet people, I listen. Now when I go to the gym, I thank God I can walk. Now when I go to the doctor, I thank God I am healthy. Now when I wake up in the morning, I think of you and thank God you were born. Everybody should have a superhero and I am so grateful to have found mine.

Chirstmas in San Francisco

This year we spent Christmas in San Francisco! We had an amazing time and enjoyed lots of quality time with our family. Meredith came down with a stomach bug the night before our flight which had us nervous to fly. However, she pulled through wonderfully and didn't get sick at all on the plane, thank goodness. We had a fancy little gadget that allowed us to strap her carseat to a piece of carry-on luggage so we could tote her around the airport easily. We were spoiled with warm weather (compared to Boston!) and were able to get outside each day for a walk or run and enjoy all those amazing hilly views. We were so happy to visit with cousin Graham, Uncle John and Auntie Jackie who were such generous hosts, as always. We also got to see Uncle Matt's new woodworking space which was really cool and see Matt and Melissa's new Hansel and Gretel style apartment, which I instantly fell in love with. We went kayaking around the harbor, walked around on the Goldengate bridge (something we always wanted to do and never had) and other than that, just took it easy. We had such a good time and can't wait to visit again.

Meredith has been doing AMAZINGLY well on her new medication. She has not had a cluster of seizures in weeks. She has had a handful of them, but no clusters. Just one here, or one there, and only when she's had an ear infection or other illness. We have not had to use Diastat in over a month. We are definitely making progress, and I cannot even describe with words the happiness that this brings Greg and I. We both feel we've seen some significant improvements in Meredith's eye contact and general interaction. She seems to pay more attention to people and things and notices more of her environment. Yesterday, I put on a Baby Einstein DVD for her to watch in her new fancy chair and she basically watched the whole thing. This is huge for her - normally, she may or may not notice it was on, and it would not keep her attention for more than a few seconds at a time. She's been her normal "chatty" self lately and has been tearing it up in the stander. Yesterday, she did 2 hours straight!