Riley Grace and Family

boring BMI stuff

2012-01-13T10:49:00.003-06:00

This is mostly for my information, so I can look back on here and see where we were at. I'm trying to be better about keeping track of how much we actually feed Riley to see where we can fit in more calories to get her weight up.

By my measurements at home she is 43" tall and weighs 34 pounds, which puts her BMI at 12.9, which is where it was last June at her UAB appointment. I know they'd love to see it over 13 so I'm really hoping she can pack on a few pounds by then. I always feed her yogurt as an after school snack and now I've switched it to ice cream (the other two girls are insanely jealous, let me tell you). The only problem so far is she seems to eat less dinner now that her afternoon snack has more fat and calories, but hopefully she's still coming out ahead a little. I'm going to do this for a month and see where we are in February.

Just for comparison, Addy's BMI is 15.0 (24th percentile) and Morgan's is 15.5 (60th percentile). Riley is in the 1st percentile, so yeah, she needs to gain a little.

A trip to the beach for the New Year

2012-01-04T13:53:00.004-06:00

We decided to take a quick trip to the beach this year to ring in the new year as a family. The first day the weather was warm enough - about 70˚ - but the water was freezing, at least to me. I took a walk on the beach with Addy, Morgan and Lucas and Addy and Morgan begged me to go swimming. I said no, it's too cold, no one else is swimming etc. Next thing I knew they both "accidentally" fell into the water with their clothes on so they had to take them off and they just happened to have their swimsuits on underneath. Go figure! They are totally crazy. They had fun splashing in the waves though.
Lucas didn't have much to say about the beach. A few minutes after he first saw the beach he fell asleep in my arms. Riley and Mitch never even made it down because after Riley woke up from her nap it started raining.

Pretty sunset

Addy and Morgan watching the pretty sunset

Since it wasn't exactly beach weather (at least to sane people) we spent a lot of time in the indoor pool.

Look a real live mermaid!

Addy and Morgan got mermaid tails for Christmas. They are really cute!!

Riley is wondering if anyone notices she's floating around all by herself

She was happy to be in the pool!

Handsome little man

Overall a nice weekend with the family. The car ride was a little rough at times though and makes me wonder how we're going to survive the trip to Disney World next month which is more than double the distance! Earplugs?

Christmas

2011-12-29T13:34:00.001-06:00

Rather than scanning in our card I'll just post the picture we used for cards. It's our first time doing a family photo - not too bad! We couldn't get Riley to smile much, though. I'm starting to think she doesn't like having her picture taken.

Christmas Eve and Christmas Day were nice overall. Christmas Eve felt rushed and a little stressed to me, so I need to figure out how to change that for next year. But the kids seemed to enjoy everything so I guess that's what matters most!

Sadie likes her new dog bed, we think. Now if we can just get her to sleep in it overnight instead of the chair in our bedroom!

Lucas LOVES his new jumperoo. :)

Riley got a new swing from Santa. We have yet to try it out but I know she uses the same one at school and loves it, so hopefully we'll get lots of use out of it at home too!

And that's about the extent of the pictures I took. Pretty bad. New Years Resolution #1 is to take more pictures!

Dear Tooth Fairy,

2011-11-17T14:04:00.003-06:00

Riley lost her first teeth! We knew it was coming, her bottom two were very loose and she already had teeth growing in behind them. But we still didn't catch them falling out and aren't exactly sure where they ended up. So because we have no teeth to put under her pillow for the tooth fairy Addy wrote this note:

I tried to get her to open her mouth by pretending to feed her a bite of cereal, but I still couldn't get a picture of the missing teeth.
I don't think she appreciated the trick, so after that I fed her for real and didn't try to take anymore pictures :)

Happy Halloween!

2011-11-01T14:17:00.002-05:00

Morgan the cat, Riley as Supergirl, Addy the devil and Lucas as himself. :)

I thought this was such a great picture of all of them, but especially of Riley who is standing on her own so well and doesn't have her hands in front of her face. I think she liked her Supergirl costume!

I was trying to get a good shot of Lucas's outfit but he was just trying to eat the pumpkin.

Cute picture of Addy and Lucas

Out trick or treating with dad

Overall a good Halloween, but we have way too much candy in the house now!

Riley holds baby Lucas

2011-10-21T12:28:00.003-05:00

She just needed a little assistance holding her hands down, otherwise this might happen:

All About Riley

2011-10-15T14:09:00.003-05:00

Riley had to create an "all about me" poster for Kindergarten so this is what we made, with some help from her older sister :)

A New Baby Brother

2011-09-24T08:54:00.003-05:00

On September 14th at 12:24pm we welcomed the newest addition to our family, Lucas. He is a big boy, weighing 10 pounds, 8 ounces and measuring 22 inches long. I told Mitch we might need to take out a loan when he is a teenager just to feed him! We think he's adorable though, and are so in love with him! He gets lots of love from his big sisters too, so he definitely won't be short on attention!

First Day of School

2011-08-10T08:18:00.002-05:00

It's hard to believe summer vacation is over and school has begun!

Addy is in 3rd grade this year. She still loves school and was excited to be starting back.

Riley started Kindergarten this year! Wow! It will take her some time to get used to longer days and a new school and new teachers, but I'm sure she will love it. I'm excited to see what this year has in store for her!

Riley was a little skeptical of the bus when it pulled up, but once she got in her seat she was a happy girl!

I got a picture of the three girls together after school. Morgan doesn't start back for a couple of weeks yet which is too bad, she is ready to go!

a day at the wildlife park

2011-08-04T08:07:00.001-05:00

Back in Wisconsin, we took a break from swimming for a few hours and went to the wildlife park.

We saw giant turtles

Mitch and Addy fed the bears

We saw some deer up close

But Addy and Morgan's favorite was the bird area. They got sticks with bird seed on them and could pick birds up with them, it was great fun!

American Girl

2011-08-01T07:56:00.001-05:00

After being in Wisconsin for a week, I took Riley to Mitch's parents house and Addy, Morgan and I went to Minneapolis. Our first stop was the Mall of America and we headed straight for the American Girl Bistro for some dessert.

Addy likes to get the biggest dessert she can find on the menu. :)
Morgan just wanted a brownie, but you can see she is very excited about it!
Mitch flew in and we made our usual stop at Italian Pie Shoppe with Uncle Bryan and Andrea. Andrea curled Addy's hair which she loved, so I had to get a picture of her while we were waiting for our pizza.

chasing ducks

2011-07-26T07:36:00.001-05:00

The past couple of years at grandma and grandpa's house there have been eagles living on the lake, so we haven't seen many ducks. This year the eagles weren't around so the ducks came back, and they didn't seem to care about us or our dog! The girls enjoyed watching them come up close.

Since Sadie (the dog) wasn't interested in chasing ducks this year Addy decided she'd do it instead.
Riley enjoyed watching the ducks swim by too!

trip to Wisconsin

2011-07-25T07:48:00.000-05:00

Once again we made our annual trip to Wisconsin in search of some cooler weather and relaxation. We might have gotten some relaxation done but it wasn't as cool as it's been in the past. On the bright side we got to spend lots of time on the lake!

Grandma took Addy and Morgan for a ride in the rowboat.

We also went to see a waterski show which the girls really liked.

summer swim team

2011-07-17T07:31:00.000-05:00

Addy was on swim team this summer again, and this year her relay team made it to the city finals! She is improving little by little and enjoying it so we're hoping she continues with swim team during the year.

UAB Visit

2011-06-13T07:21:00.001-05:00

Riley had her 6-month checkup with Dr. Percy and Jane Lane at UAB. She will now go yearly rather than every 6 months. Mitch took her by himself since I was on the coast playing in our state tennis tournament (rough, I know). So I don't have a lot of details but wanted to make a record of the basic info from the appointment.

The good news is she gained weight since last time - she weighs about 32 pounds now. She also grew in height so her BMI is still only 12.9, but they were happy that it went up from her last visit and at this time they see no need to talk about a feeding tube.

Also at her last appointment we had talked about weaning her off her seizure medication (depakote) since we haven't seen any seizures since she started it, but now they suggest leaving her on her current dosage and eventually she will just outgrow it and we can see if she starts having seizures. So that's our plan for now.

The only bummer of the appointment is that her spine has started to curve slightly. We had an x-ray done to get a record of the starting point and will continue to monitor it.

And that about sums it up!

staying cool

2011-06-08T15:31:00.007-05:00

Since the weather is around 100 degrees every day we decided to find a nice indoor activity for the whole family to enjoy and stay cool. We finally checked out the new Mississippi Children's Museum. It is really nice, and the kids all had fun!

Riley loves her water activities!

Addy and Morgan did too

Morgan found the train table

Riley and Dad learned about some trees

Riley decided to take off and check the place out on her own. I don't know what it is about summertime but she always walks so well over the summer!

Hey they're actually getting along in this picture. :)

We will definitely have to keep this place on our list of things to do over the summer!

IRSF Conference 2011

2011-06-03T16:03:00.006-05:00

Once again, a busy but fun-filled weekend! This year's conference was in Boston. Mitch and I left the kids at home with Grandma and Grandpa this year. After a cancelled flight and a delayed flight, we eventually arrived in Boston 4 hours later than planned on Friday. We were both tired and hungry so we skipped out on the welcome reception and got a couple bowls of clam chowder - yum! We made it back for the crackerbarrels and got to see some people we haven't seen since last year, which is always my favorite part about these conferences!

Saturday's keynote speaker was Dick Hoyt and he was amazing! I left the kleenex in our hotel room because I am always determined not to cry at these things, but that was a mistake. A huge mistake. I bawled through his videos. Not only is he a runner, which is near and dear to me, but he pushes his disabled son in all his races. It was an incredible speech.

We usually focus on something we want to learn more about at these conferences and this year our focus was on reading and education. We feel like we have a better idea of what to ask of Riley's teachers now, and we also realized we need to read more often to Riley. Fortunately Addy is an amazing older sister and loves reading to her sister so she's been sleeping with Riley and reading to her just about every night. But we need to do more and work with her over the summer.

I think the most important message we took away from this conference was rather than assume Riley can't do something, let's assume she can instead. So that's what we're going to do!

I take significantly fewer pictures when my kids aren't along, but we did get one shot of Mitch and I when we went out to dinner with our friends Deberah and Patrick Sunday night.

If you notice I'm a little thick in the middle (as well as a few other places but try not to notice those ;) ) I am 6 months pregnant with our baby boy. I guess I never did a formal announcement on my blog. :)

dancing queen

2011-05-22T15:44:00.000-05:00

Morgan's dance recital went well - as well as can be expected for 3/4 year olds! She was very cute anyway, which is all that matters. :)

another birthday

2011-05-12T06:36:00.000-05:00

I have to give a shout out to Sadie who turned 10 yesterday! She is starting to slow down and show her age but still loves to chase a ball like she's a puppy. Happy Birthday Sadie!!

Happy 6th Birthday, Riley!!!

2011-04-25T19:29:00.000-05:00

I'm not sure she was a fan of the glasses. :) Riley is 6! To be honest I used to kind of dread her birthday. If she wasn't going to meet any new milestones what was the point of getting older? But this year I guess you could say I was at peace with it. Maybe next year I'll even be a little excited. One year we'll have a party. :) For now she seemed to enjoy her birthday at school and at home with her sisters!
I'd like to take credit for the pretty cupcakes but I was sick so I ordered them. I don't think Riley minded.

tennis

2011-03-29T09:51:00.003-05:00

Addy and Morgan started tennis lessons this month. So far they are both really liking it! And I have to say, Morgan's 4 year old group is adorable!

Happy St. Patty's Day!

2011-03-17T09:45:00.000-05:00

Carrie and Avery

2011-03-16T09:35:00.001-05:00

One of our favorite things about going to Orange Beach is getting to see Carrie and Avery! This year we met them out for lunch at Lulu's. I love seeing how big the girls are getting together!

Addy and Morgan loved the giant outdoor play area
Lunch wore Riley out!

Orange Beach, Alabama

2011-03-15T09:25:00.000-05:00

For the third year in a row we went to Orange Beach for Spring Break. It's hard to pass up a week of beach and relaxation! We had beautiful weather this year, sunny every day and no rain! Addy and Morgan loved running along the beach, swimming in the water, collecting shells, and building sandcastles.
Riley was very serious at first, but she loved it too. The weather was warm, but not too hot so she was comfortable.

We didn't really want to be inside when it was so nice out but we took the girls to the indoor pool a couple of times too.

Happy 4th Birthday, Morgan!!

2011-03-08T09:12:00.001-06:00

I can't believe my baby is 4!

Some things about Morgan:

her favorite color is yellow, although purple is second and pink is good too
her hair is brown and curly which we think is adorable, but she wishes she had blonde, straight hair like her sisters and her friend Ella
she is a girly-girl. Almost exclusively wears dresses, but sometimes can be talked into a skirt. Pants or leggings are rare.
she is goofy. she has personality, that's for sure.
she loves school! She is nearing the end of her first year of Montessori preschool, and is already signed up for next year.
she also loves dance class, and can't wait until her recital when she can wear her cute little costume.
she loves to sing and dance, and quickly learns the words to any song she hears and sings long with it. She's pretty good too!

Sorry for the lack of posts

2011-02-19T10:43:00.003-06:00

A couple months ago our computer crashed and died so we had to erase it completely and reinstall everything. Ever since then internet explorer will not let me open certain websites, and blogger was one of them! I'm not computer-savvy enough to figure it out so I finally just installed Firefox and haven't had any problems since. Don't know why I didn't think of that before! So no more excuses from me...

Addy's Birthday Sleepover

2011-02-19T10:30:00.006-06:00

Addy turned 8 (8!) on January 23rd and wanted a sleepover party. The girls decorated pillowcases, painted their nails, played Wii and watched a movie. I think Addy had a great time at her party!

For her cake she requested "chocolate chocolate" so this is what I made:

It was a crazy and late night, but overall a success I think!

UAB Visit

2011-01-10T13:44:00.002-06:00

We had Riley's appointment with Dr. Percy last Friday. Unfortunately it came in the middle of her being sick with a fever and not eating for a couple of days. So her weight was down (29.5) which means her BMI was below the critical level so we got the G-tube talk. While we agree that she really does need to gain weight, we think that if she hadn't been sick her BMI would have been about where it was last time. She goes to see the neurologist in a couple weeks and I'm hoping her weight is back up in the 30s then.

Over the weekend Riley seemed to get better and eat more and more including vitamins and milk with instant breakfast that she hasn't been willing to eat/drink in a while! Today the kids are out of school thanks to some icy weather. Riley woke up and ate a normal breakfast but now she seems like she's getting worse again and has been doing this most of the day:

I signed up for another marathon

2011-01-02T13:38:00.002-06:00

The day after I told myself I wasn't going to run a marathon this year unless I happened to get into the NYC lottery. Ha!

18 week training plan began last week. Hopefully I will enjoy training in the spring rather than the summer like last time. The main goals for this one are still to finish and have fun. I'd like to come in under 5 hours but there are hills, lots of HILLS from what I hear, so we will just have to see what happens. Can't wait!

Christmas

2010-12-27T15:12:00.005-06:00

It's been a busy but fun week here, and we just wanted to share some of the highlights!

Our huge tree. Felt a little like National Lampoons.

It's kind of sad that the only picture I took on Christmas Eve was of Sadie getting her gift!

Morgan's big gift from Santa was a Barbie dollhouse - it was a big hit!

Riley got her own American Girl doll, complete with a wheelchair! It is also a hit, although maybe more so with her sisters!

Addy's big gift was a DSi, but her most entertaining gift was Just Dance 2 wii game. We are all getting a kick out of it.

We hope you all had a very Merry Christmas!!

Disney on Ice

2010-12-19T21:50:00.002-06:00

We gave the girls an early Christmas present and took them to see Disney on Ice Princess Wishes. It was so good! The girls had a fun time dressing up in their favorite princess dresses and we really enjoyed the skating!

didn't mean to disappear

2010-11-22T07:36:00.002-06:00

We are still here, still alive! Life just got in the way and I haven't been very good about updating this blog.

The girls are off school this whole week, so hopefully we'll be doing some fun stuff and I'll be posting more pictures of them. Riley is going to day camp at Hope Hollow today and tomorrow and I know she'll have fun there!

One of us is still running (that would be me) but Mitch's knee is feeling better, though not completely healed, and I am signing us both up for the Jingle Bell Jog 5K race in 2 weeks so hopefully he'll be able to get back into it.

As for me, 13 days after the Chicago Marathon I ran a 15K race, then last Saturday I ran the 12K's of Christmas (pictures below) and on Thanksgiving I'm running the Turkey Day 8K. The marathon was fun and I hope to do another one someday but right now I am loving the shorter distances. We are both signed up for the New Orleans Mardi Gras Marathon in February, but I'm 90% sure we'll both be downgrading to the half. It's kind of difficult to fit in 3-4 hour runs over the holidays.

We are Marathoners

2010-10-11T05:27:00.003-05:00

First of all I want to give a huge thanks to everyone who supported us throughout our training and on marathon day. Whether you gave monetary donations or offered up your thoughts and prayers I don't know if we could have done this without your support. We are really blown away by the generosity we have seen that helped us reach our fundraising goal and then some!

Yesterday Mitch and I ran the Chicago Marathon, and met our main goal of finishing! We both had some knee pain leading up to the marathon so we were really worried we wouldn't be able to finish. The weather was a lot warmer than we expected which didn't help either. But it was an awesome race, full of energy, and a lot of fun (as far as marathons go, I imagine). 45,000 runners and tons of crowd support the entire way, we felt so blessed to be part of that.

I finished in 5:04:39, and Mitch finished in 5:39:56 which is really incredible considering he had severe knee pain from about mile 8 on and had to hobble and limp his way through much of the race. Had that been me I probably would have called it a day and pulled out of the race.

Our legs are sore, and walking around after sitting for any length of time is a challenge. Other than Mitch's swollen knee we are feeling pretty good. It was an amazing experience but I think we are both glad that it's over with!

Magazine Article about our Marathon

2010-10-07T14:28:00.002-05:00

Mitch and I were interviewed by Mississippi Sports Magazine - check it out!

MS%20Sports%20Magazine%20Sept%2FOct%202010

knee pain + marathon in 12 days = not good

2010-09-28T13:34:00.002-05:00

In case anyone is wondering, training for a marathon is not a walk in the park. Mitch has been battling knee pain for a while now. I had some after the half marathon we ran last month, but it went away after a couple of days and I hadn't thought much about it since.

Well it reared its ugly head this last Friday and won't go away. Apparently running 18-20 miles on the weekends in addition to playing singles tennis is more than my knees can handle. Mitch had his chiropractor appointment this morning which really seems to be helping him, so he made me an appointment too. With some foam rolling and the right strengthening and stretching exercises he believes we will both be running this marathon. But no more tennis!

I am pretty sure taper madness will be setting in now. I'm going to have a lot of time on my hands with no tennis and very little running to be done in the next 12 days! Maybe I could work on Morgan's baby book that is 3 1/2 years past due?

I ran 20 miles today

2010-09-19T16:35:00.002-05:00

I just have to keep saying it! I wasn't sure I should do it because my legs were still somewhat tired from running a 10K race last Saturday, then an 18 mile run Sunday. Then playing tennis Tuesday, Wednesday, Thursday and Friday. (probably shouldn't be doing that but it's fun!)

So I told myself I'd go for 14 and see how it went and keep going if I could. When I got to 14 I told myself "it's only 6 more miles!". I hope I say that on marathon day after running 20 miles.

It hurt (my knees are still sore from last weekend and my calves kept wanting to cramp up), it was hot (75 when I started, just over 90 when I finished) and it was long (almost 4 hours) but I did it! And I'm so glad I did. Now the work is done and I rest up for the marathon that is 3 weeks from today!!

I am ending a relationship

2010-09-06T09:33:00.002-05:00

With my Asics. I've been running in them for years, well before I really got into running, and overall I like them. But ever since I started running consistently I've gotten blisters. They are painful and annoying and I was stressing out about how I was going to make it 26.2 miles with them.

So Saturday I went back to the running store and someone finally realized I had too much room in the toe of my shoes, so my feet were sliding around too much causing the blisters. I bought a pair of Mizunos and finally for the first time in a few weeks I was excited to run again. 5 miles yesterday and 9 miles today and not even a hint of a blister. I'm sold! Bring on the marathon! Well, maybe not quite yet...

is it taper time yet?

2010-08-23T15:41:00.002-05:00

The Chicago Marathon is fast approaching! We have been back from our trip to Wisconsin/Minnesota for 2 weeks now and it has been really, really hard to get back into running in this heat.

On August 7th Mitch and I ran the Urban Wildland half marathon in Richfield, MN. The temperature was in the 70s, and it even rained a little. Perfect! We were able to run all 13.1 miles together, only stopping to walk through a few of the water stops. Mitch finished in 2:09:58 and I finished in 2:09:59, meeting my goal of a 2 hour, 10 minute half marathon almost exactly!

And now here we are back in Mississippi where it is 100+ degrees and nice and humid. Needless to say we've both been slacking in the running department. However, in less than 7 weeks we have committed ourselves to run 26.2 miles so here we are!

Really hoping for a cold front when we have to run the 20-miler next month...

school has begun!

2010-08-16T13:55:00.003-05:00

We love it when school starts. For one thing, the kids are still young enough to love school. For another, they drive mama crazy during the summer. And lastly, it is a lot of work having 3 kids home all day, every day. Add to that having to pause what I'm doing every hour or two to feed Riley her meals and snacks and I can't get much of anything done during the summer. I tried to have a life of my own, dragging the kids to the gym nearly every day. But I feel guilty when I drop Riley off in the childcare because I know she'll most likely just sit in the same spot the whole time. And if she does get hungry the childcare workers have to stop what they're doing and feed her every bite, while trying to entertain the other kids that are in there and that's probably not fair to them.

So anyway, yay! School!

Addison started 2nd grade. Yes she wants to be called Addison instead of Addy now. Also, a Hello Kitty backpack and Barbie lunchbox are OK for a first grader but embarassing for a second grader. Who knew?

Riley was supposed to start kindergarten this year but they wanted to keep her in preschool another year since she just got her eyegaze communication device at the end of the last school year. They wanted to get more comfortable with her on it before she went to another school and had to start over. Mostly this is a good thing, delaying the stress of starting a new school and new teachers another year. But in a way for me, I wanted her to be in kindergarten because she was supposed to be in kindergarten! Oh well, in 11 years when Rett Syndrome is cured she will be the most popular kid in her class because she will be able to drive before everyone else.
I think Riley was a little jealous when Addison's bus came first

I wanted one more picture of Riley but she was pretty determined to get on that bus when it pulled up!

If you look closely you can see her BIG smile. I'd say she was pretty excited to be going to school again!

Wisconsin Vacation in pictures (lots!)

2010-08-11T07:05:00.006-05:00

Late July my mom, me and the kids drove up to Wisconsin.

Along the way we ate some throwed rolls....

and stopped at a park to run around a little

at grandma and grandpa's house we relaxed on the lake

and caught some frogs

built sandcastles for them to live in

Sadie jumped off the dock for tennis balls

the girls floated

we visited with cousins and went to a waterski show

did some paddleboating (and kayaking and canoeing)

everyone enjoyed the boat rides

Addy did lots of tubing and tried kneeboarding

we rode bikes

went on a boat ride with Nana and Papa

and had a sleepover with more cousins

Our trips up North are always very fun and go by very fast!!

running update

2010-07-22T07:16:00.003-05:00

We are finishing up week 7 of our training for the Chicago Marathon and unfortunately neither one of us has been doing much running.

Mitch was having some pain in his knee, to the point where he could hardly even walk. He saw a sports med doctor, had an MRI which thankfully found nothing. He likely has something with a tendon in his knee, so the doctor gave him a shot of something in the knee (ouch!) and told him no running or tennis until it didn't hurt.

As for me, I was out for a 15 mile run (my longest so far) a week and a half ago and all was going well until I hit mile 10. I felt a pain in my calf. Not quite a pull but it felt like it wanted to pull. I (probably stupidly) finished the last 5 miles and then consulted with Dr. Google who said it was a tear or strain in the soleus muscle, which is the muscle right below the big part of the calf. Everything I read said to rest it for at least a week so I did. I took spinning classes and did some deep water running.

Last Saturday we ran the Hit the Bricks 5K since we were already registered. We figured even if we had to walk it we still wanted to try. It was the first 5K we ran together last year, plus they have chick fil a chicken minis afterwards and I couldn't pass those up! Thankfully we both were able to run it relatively pain free! I also set a new PR of 26:37, so I'm getting closer to my goal of running a 26 minute 5K.

Here is a picture of Mitch and two random guys from the race. :)

So now that we were both able to run the 5K we are starting to get back into marathon training and will hopefully both run the Urban Wildland half marathon in Minnesota in a couple weeks. If anything it is sure to be cooler than the last half marathon I ran!

Visit with Dr. Percy

2010-07-02T19:46:00.002-05:00

Riley had her 6-month appointment at UAB today which always makes for a good time. We ate at the Cheesecake Factory like usual and swam in the hotel pool the night before so the girls had fun.

Riley's weight is up to 29.8 which is exactly 1 pound more than last time so at least she's gaining. She also gained in height though so I think her BMI actually dropped. Gotta keep piling on the butter I guess. I am excited for the day she finally reaches 30 pounds - we are so close!

Riley's Summer Camp

2010-06-24T15:08:00.000-05:00

I finally remembered to take my camera when I picked Riley up from summer camp!

For the last three weeks Riley has gone to Hope Hollow to attend summer camp and she just loves it! They do crafts, play games, have a water fun day and even go horseback riding! Best of all her buddy Ashtyn has been there sometimes too. She loves Riley and I think the feeling is mutual!

It's Official!

2010-06-23T08:34:00.002-05:00

We bought our flights to Chicago for the marathon! Southwest is having a nice deal right now so we're staying an extra night which makes it even more exciting. Our hotel is booked so now all we have to do is... RUN! Which is not that easy in this Mississippi heat.

Last weekend I talked myself out of 9 miles and only did 6.5. This weekend I WILL do 12! Now that I've written it down I have to do it. :)

Mitch ran 9 miles last weekend and hurt his knee. It's feeling better now but let's hope it's nothing that gets worse!

half marathon finished!

2010-06-13T08:57:00.007-05:00

And it was a HOT one. But why would I think otherwise in June in Mississippi?

Race Report:

I got up at 3:40 so I could eat breakfast (toast with peanut butter and a banana) and drink some coffee and chug water 2 hours before start time which was 6:00am. Checked the weather and it was 80 degrees with a feels like temp of 87 and 85% humidity. Not even 4:00! Got dressed, put my timing tag on my shoe, grabbed my garmin watch and ipod and was out the door. Picked up friend A, then picked up friend M and we were at the race site by 5:20.

6:00am and the horn sounds and we are off! There were nearly 1000 people running the half marathon, and it was so exciting to be part of it! I made sure to keep my pace comfortable and slowish, just under 10 minute miles, because I didn't want to go out too fast and fade out later. The sun was out now and we were running in it which made for a hot run. I grabbed water from every water stop and drank on the run.

By mile 6 I was feeling hot and tired, and I wanted to walk a little. In training I was able to run 12 miles only stopping for about 30 seconds once to take a drink so I was a little disappointed that I wanted to walk so soon. I kept telling myself "there's no shame in walking, there's no shame in walking". Just over the halfway mark at the next water stop they had ice in the water which made it so refreshing and cold. I decided to walk and drink it and savor it. The next couple miles were pretty hilly and sunny so I took walk breaks on the harder hills. I walked fast and then was able to run faster after each walk break so I still kept up with the runners around me.

Miles 8 and 9 had some shade and more downhills than uphills which felt pretty good. But at mile 10 we turned onto a road that was full sun and facing the sun which was not so fun. Mile 11 they had us run through a neighborhood that was full sun and just brutal. I walked through the water stop and kept walking. I tried running but was just too hot and tired. I probably walked an entire mile. Caught up with friend M who said "this blows" and I couldn't have agreed with her more.

At 12.1 miles I told myself ok ONE MORE MILE I can do this. I saw the guy directing runners toward the parking lot of our finish line so I started running. I would have been perfectly happy walking that last mile but I really wanted to run across the finish line. They had us run around the parking lot and down the frontage road (so close and yet so far!), up the exit ramp (ugh, one last hill!) and then down around back to the parking lot and the finish line. At this point I was running by myself so all the people standing around the finish line were cheering for ME, go me! I saw the time clock was at 2:19-something so I pushed a little harder so I could finish under 2:20 and I did - official time was 2 hours, 19 minutes, 31 seconds. I finished.

I felt amazingly good. My knee, which usually hurts after long runs, didn't even hurt. My muscles felt stiff and a little tight but otherwise I felt fine. I am now a believer in walk breaks! I don't feel like they slowed me down any, and I felt so much better when I took them. Hopefully walk breaks will make marathon training this summer more manageable!

6 days until half marathon!

2010-06-06T12:48:00.002-05:00

This half marathon has been in the works for a long time and now that it's getting close I'm getting nervous! I had hoped to run 1 or 2 long runs in the last few weeks but heat and travel kind of prevented that. So I guess I will just go out and do my best and hope I can make it!

The plan for this week is to REST! I'll probably run 2 or 3 short runs in the next few days but that'll be it. I really need to concentrate on eating healthy to do some damage control from our trip to Colorado. There was lots (and lots) of unhealthy eating going on there and I'm definitely feeling it this week.

I also need to make sure to drink my water! This morning it was 74 degrees with a dewpoint of 73 degrees, which means it was extremely humid. I imagine it'll be just like that next Saturday. It would be nice if they passed out dry towels along the course, I think I'm going to need them!

Top 10 reasons Rett Syndrome is not all bad

2010-06-05T08:45:00.005-05:00

It's hard not to focus on the negative, so I wanted to list some positives! I thought of a few of these on our recent trip to Colorado, if you can't tell. :)

Closer parking spaces
Getting moved to the front of the line at airport security
Getting to board planes sooner
Becoming friends with amazing people you wouldn't have otherwise met
Discovering a strength you never knew you had
How many people get to say they are truly inspired by their child?
Really understanding what is important, and what is not
Meeting people who are so compassionate, caring and generous it blows you away
Appreciating the little things in life
The look in her eyes that says peace, love, awareness and innocence all in one

IRSF Conference 2010

2010-06-02T15:58:00.002-05:00

We are back from Colorado Springs and had a wonderful time! It was great to meet up with other families, learn some new ideas for different therapies and hear inspiring stories of hope for a cure!

Highlights:

The keynote speaker. A couple things she said really stuck out for me. One was that a bent and tarnished quarter has just as much value as a shiny new quarter. I'm going to remember this at our IEP meetings in the future! And she told us that if you can't get out of it, get into it!

I also loved hearing where IRSF was headed and watching Clint Black's new PSA video! Very inspiring!

The communication sessions are always favorites. It's so wonderful to hear people talk about and show videos of our girls showing off how smart they are!

The tribute reception! By far my favorite part of the weekend. We watched some amazing dancers, which Riley LOVED! Then Kevin Black sang. He is Clint Black's brother who had a daughter with Rett Syndrome that passed away a few years ago. And then we heard from a fabulous band from Nashville, the John Titlow Band. There was tons of great music and dancing!

Riley had tons of fun at the Tribute Reception!

Dancing with Daddy was the highlight for her I think

Does this look like a happy girl or what?

Riley walked right over to the band for some personal attention

And she got it!

We spent lots of time with the two couples we hung out with last year. Sunday night we all went out to dinner together. We had our own private room which was PERFECT for the kids. Made for a relaxing and fun dinner!

Here are the Dads with their special angels

All the kiddos

The parents! I feel really tall in this picture...

These annual conferences are just what I need to "recharge my batteries"!

School's Out For Summer

2010-05-27T20:36:00.003-05:00

I can't believe the school year is over already! It really went by way too fast.

Tomorrow we head to Colorado Springs for IRSF's Annual Family Conference. I can't wait to meet up with other families again!! Wish us luck flying with all the kids though! :)

Magnolia Meltdown 5K

2010-05-22T10:54:00.002-05:00

(excuse the sweaty look)

Today was my 5K with my running group. My ultimate goal was to beat my last 5K time which I did, finishing at 27:02. I was hoping to finish about a minute faster but it was hot (80-something and 93% humidity) and the course was tough. 3 different people in our group who were the faster runners said it was by far the hardest 5K course they have ever run. So that made me feel better. The course started uphill and ended up a really hard hill, not fun!

Overall I'm happy and I won 3rd place in my age group. Next up is the half marathon!!

Morgan Graduates

2010-05-21T07:26:00.002-05:00

Wednesday was Morgan's last day of Mother's Morning Out for the year. She'll still go this summer but they had a little "graduation" ceremony to mark the end of the school year. So cute!

Here's Morgan waving at mom while the rest of her class sings songs

Shy little Morgan getting her certificate from her teacher

After graduation, ready to party

Class party

Morgan had a great first year of Mother's Morning Out. She LOVES her teacher and loves her little friends, and I'm glad some of them will continue it this summer with her!

Dancing Queen

2010-05-20T19:15:00.001-05:00

Tuesday was Addy's dance recital. They danced ballet to the Wizard of Oz, and then did jazz dances after that.

Here she is dressed in her ballet costume

On stage!

Jazz

Afterwards, with her flowers and dad

With mom

We also had the rehearsal Monday night which was LONG and went late. Morgan and Riley were there for that one, and amazingly they did very well sitting there watching for the 4 hours we were there. I guess they loved the music and dancing too!

It was a fun night and a cute recital. Addy is not really interested in continuing dance though, so this was probably her last recital. However Morgan wants to "dance like those girls" so there may be more tutus in my future!

I ran 12 miles

2010-05-18T07:46:00.004-05:00

1.1 miles to go and I will have run a half marathon! 8 miles to go and I will have completed marathon training. I don't plan to go over 20 miles until the actual marathon, so going 8 more miles doesn't seem too horrible right now. Just a little horrible. :)

It wasn't that bad. The weather was warm (70-something at the start, 81 at the finish) and humid (96% humidity). My feet hurt (will my feet ever not hurt?) but my legs didn't ache like they did the first time I attempted 12 miles. I did get a side stitch from about mile 9 to mile 11 which sucked. I was able to keep running, but that thing hurt. Was it from the sports beans I ate at mile 7.5? Who knows.

BTW sports beans are yummy! I had half the packet about 30 minutes before I started running and finished the other half when we stopped to use the bathroom.

We stopped 4 times for a total of 4 minutes. First time was a potty break, then two stoplight pauses, and once to take a big swig of water.

The backs of my legs are a little sore today but nothing bad. I do have one tight muscle in the back of my right leg that has been tight for a while now so I plan to do lots of stretching today.

After my run I was starving - which would seem normal given I just burned over 1000 calories. Actually my heart rate monitor said I burned 2003 calories but it's always seemed too high. Normally I can't eat after a long run, my stomach feels sick if I try. But after the 12 miles I actually felt hungry so I treated myself to a chicken salad sandwich on a bagel from Beagle Bagel.

That might be my new post-long run splurge! It was delish.

Today is rest day, hooray!

a few of my favorite things

2010-05-15T08:50:00.002-05:00

For running anyway!

My Garmin Forerunner 305, which is actually not even mine. I got it for Mitch for Christmas but I think I use it more than he does! Great for tracking distance, time and pace. It has other cool features too but that's mostly what I use it for. So nice not to have to drive out my route first to figure out how far I'm going!
Pink Spibelt! I didn't think I'd like it at first, but this thing holds my iphone plus anything else I want to carry. I wish it was waterproof but I just put things in a ziplock bag and it's all good.

2-bottle hydration belt. I think once I start marathon training I'm going to need a 4-bottle but this one works great plus has a pouch to keep keys or anything else too. Plus the bottles are easy to drink out of while running without choking!

the road that never ends

2010-05-12T12:24:00.004-05:00

This was the end of the trail on my run today. It was so hot, it just didn't seem like I was ever going to get to the end.

Weather right now: 86

Feels like: 88

Feels like when you're running on asphalt and the sun is beating down on you and there's no breeze: 150

Whew. It was a hot one.

The Running Blog

2010-05-12T09:38:00.004-05:00

With one month to go until my first "big" race - a half marathon - I figured it's time to start blogging about running!

A little background: I started running inconsistently about 3 years ago. I started the Couch to 5K training program a couple times but never finished it. In January 2009 I actually stuck with it and started running 3 days/week pretty consistently. By last summer I was running 2-3 miles at a time. Sometimes I'd run 4 miles and I thought that was SO far.

My first 5K: Last July I decided I wanted to try running a 5K race and I talked Mitch into signing up with me. It was so much fun! We ran two more 5K's over the next several months and then I signed up for my first half marathon, which is coming up June 12.

Stepping it up a notch: I should say a BIG notch. Running a marathon has always been something that's been on my list of things to do. Since I was already training for a half marathon I thought maybe this was the time to go a little farther and run the whole darn thing. October is Rett Syndrome Awareness month so Mitch and I signed up for the Chicago Marathon on 10-10-10 and hope to raise money for Rett Syndrome while running it.

So there you have it! Right now I'm following Hal Higdon's Novice Half Marathon training program although I'm adding a couple extra weeks since I was ahead of schedule when I started. I'm also running 12 miles as my longest instead of just 10 since I have the time. I already have one 12-miler under my belt (um, ouch!) and plan to do another one next Monday with a training buddy. After that we'll see!

Well, off to run now!

Look who is 9!

2010-05-11T15:25:00.001-05:00

Happy Birthday, Sadie!! :)

Birthday Wish for a Cure

2010-04-25T18:24:00.001-05:00

Riley is 5 today! Where has the time gone?

Of course her birthday wish is for a cure for Rett Syndrome so we made a donation in her honor and wanted to pass along the website in case anyone else wants to donate to a great cause! http://www.firstgiving.com/rileybleske

Thanks!!!

horseback riding

2010-04-25T09:32:00.000-05:00

Riley is continuing to do therapeutic horseback riding and loves it! We think it has something to do with the fact that she has a crush on the tall guy in the white hat though. :)

On Saturday we went to the Boots & BBQ fundraiser for Hope Hollow, which is where Riley will go to summer camp this year. They do therapeutic horseback riding there too and let people try it out at the fundraiser. Addy and her friend jumped at the chance!

Addy obviously did not inherit my fear of heights. She loved being on the horse!

Morgan thought she wanted to try it but changed her mind as soon as she got on the horse. I had to get a picture first though!

Spring Break 2010

2010-03-28T09:10:00.000-05:00

We went back to Orange Beach again this year. The weather could have been warmer but we still had a great time!

Aunt Jessica came with us and stayed for a few days and that was a whole lot of fun!

Riley enjoyed walking on the beach again

This girl can sleep anywhere

Morgan discovered that she can swim on her own with the help of a floaty

Wearing green on St. Patrick's Day. Morgan did not want her picture taken, apparently.

Riley lounging on the beach

Everyone had fun swimming in the pool

Carrie and Avery came to visit one day. It was nice to see them again!

Riley tried to give Avery a hug with her legs. I'm not sure Avery liked it though!

Happy Birthday Morgan!

2010-03-08T23:47:00.000-06:00

I can't believe my baby is 3!

We Race for Riley Grace

2010-02-20T12:38:00.000-06:00

Today Mitch and I ran the Make a Difference 5K race to benefit the Children's Hospital. They encouraged people to run in honor of someone so we of course ran for Riley! We had a few people ask us who Riley was so it was an easy way to spread the word about Rett Syndrome.

Why yes that is a trophy in my hand. I surprisingly won 1st place in my age group, coming in at 27:16 (I think). They said there were about 600 runners so I was pretty happy!

The back of my shirt, which motivated me to run faster. I figured the more people I passed, the more that would see my shirt!

At the start of the race we had to run on a busy road with just one lane blocked off and there were a lot of slow runners in front who were hard to get around. Mitch got around them first and took off, leaving me in his dust. He beat me by about a minute, 45 seconds (but I got a trophy!). :)

It's a beautiful day here in Mississippi, and a great day for a run!

snow day!

2010-02-12T10:33:00.000-06:00

I woke up this morning and for a minute thought I was back in Wisconsin!

Riley seemed to like the snow. Morgan did not.

Addy had fun building a fort with the neighbors

The dogs had fun too. :)

I packed snow around Riley to make her a chair to lean back on and she started to fall asleep.

science museum

2010-02-04T08:42:00.000-06:00

Last Saturday was about as cold as it gets in Mississippi so rather than stay inside all day we went to the Science Museum.

The two-headed snake was interesting but the hall of fish aquariums was definitely the favorite!

Happy Birthday Addy!

2010-01-25T08:23:00.000-06:00

Addy turned 7 on January 23rd. 7!

Since she has been having an awesome 1st grade year, we decided to take her to Minneapolis, where she was born, for her birthday. It was just Mom, Dad and Addy. Riley and Morgan stayed home with Gramma. :)

We planned indoor activities - it is January in Minnesota! Saturday we went to the Mall of America where we spent lots of time at the American Girl store and riding rides at the amusement park.

Here is Addy with her American Girl dolls ready to go.
We met some friends of ours and the girls had dessert at American Girl Bistro.

Then we were off to ride some rides.

Mom wasn't a huge fan of the ferris wheel - too high! Addy loved it though.

Saturday evening and all day Sunday we spent at the indoor waterpark at our hotel. Saturday Uncle Bryan and his girlfriend hung out with us, and Sunday they came back as well as all Addy's cousins. It was a great time!

Back to UAB and Georgia

2010-01-21T18:54:00.001-06:00

Riley had her 6 month appointment with Dr. Percy in Birmingham last Friday. She grew over an inch and gained 2 pounds so good news! She is 28.8 pounds, for the record. She was also showing off and walking very well on her own the whole time, so they seemed pleased with her.

After her appointment we drove to Blairsville, Georgia and stayed with our old neighbors. It was so great to see them again! Kids grow so much in a year and a half.

Two tired girls - Addy and Morgan - on our way to Georgia.

Three boys and three girls :)

The youngest of the bunch - Morgan and Wes - up to no good I'm sure.

Riley really enjoyed the nice big comfy couch and often camped out in one corner and slept, just like she is here.

It was a great weekend and I hope we can do it again before another year and a half passes!

Christmas 2009

2010-01-14T07:32:00.001-06:00

I think one of my New Years resolutions needs to be take and post pictures more often. Here is a big picture dump of Christmas pictures to close out 2009!

A bunch from Christmas Eve and Christmas morning:

We took Addy to a ballet so she could watch her babysitter dance in it.

The picture we used for Christmas cards

At another ballet - the Nutcracker

Pictures in a studio:

Morgan

Addy

Riley

I hope everyone had a good Christmas!!!

Halloween

2009-11-01T07:09:00.000-06:00

A little late, but I wanted to post these pictures from Halloween.

Riley was pretty grumpy at first but finally started smiling when it came time to start trick or treating. I guess she just wanted some candy!

The girls got (and ate) a ton of candy. Addy and Morgan got a little loopy...

And Riley was never so excited to go to bed when it was all over. :)

Morgan

2009-10-18T09:29:00.000-05:00

Morgan was invited to her first birthday party yesterday. It was a little girl in her Mother's Morning Out class and it was pretty cute to see a bunch of 2 and 3 year olds running around. They got to go on a hayride, pick out a pumpkin and then decorate it which Morgan loved!

new rooms

2009-10-11T09:22:00.000-05:00

We switched Morgan and Riley's bedrooms so Riley now has a queen sized bed. I think she likes it!

Her sisters like it too. :)

Birthday Fun!

2009-09-14T15:16:00.001-05:00

My birthday was this past Saturday and to celebrate we went to the Kenny Chesney concert in Biloxi. We went with 2 other couples and had so much fun!

Friday night we went out to dinner at Mary Mahoney's restaurant. The owners have a Rett Girl in the family. We didn't get to see them this time, although we have met them at the Birmingham conference!

Here we are out to dinner (notice the Katrina waterline behind us??? the destruction in Biloxi was unbelievable, and still very apparent).

The girl sitting on my right is my birthday twin - same year and everything! :)

First Day of School

2009-08-20T06:08:00.000-05:00

How could I not post these pictures?

Addy, my big first grader!
Waiting for the bus, which comes at 6:24 this year. Luckily Addy loves school and has yet to have a problem getting up in time!

Riley ready for her second year of preschool!

We decided to try having her ride the bus to school this year, and I think she's pretty excited about it!

Walking to the bus with dad.

summer trip to Wisconsin

2009-08-10T05:54:00.000-05:00

I'm backdating this because I'm so behind on this blog!

At the end of July we went on our annual trip up to Wisconsin. The weather this year wasn't the greatest, but we still had fun!

Addy spent a few days with her cousins by herself, and my parents kept Riley and Morgan so I got to go to Minneapolis KID FREE! It was nice to see friends, hang out with my brother and of course go shopping. At this time of the year I miss living there, but when we go in the winter I remember why I don't!

My favorite view of the city
My brother's "white trash burger", complete with fried cheese curds and chicken fried bacon. Yum, yum!

Mitch flew in to Minneapolis and after we picked him up we went to our favorite pizza place.

The rest of our trip was spent in Wisconsin, either at my parents' house or with Mitch's family.

Three girls watching TV :)
Since it was too cold to be on the lake much we went bowling. Everyone had a blast, including Riley!

A not-so-very exciting picture of breakfast but a cute one of the girls anyway!

On our way back home we stopped in Cross Plains, WI and went to a volleyball tournament for Rett Syndrome. We met some great people and hope to go back again!

Overall another short but sweet visit up North!

Gait Trainer

2009-07-14T20:24:00.000-05:00

Riley had PT today and we brought home this gait trainer to try out for a few days. It's big (why do they have to make this stuff so big?!?) but it does the job! The PT likes this one because we can lock it in place and she can just stand - which is the main reason Dr. Percy wants us to get one, so she can be on her feet without us having to hang onto her all the time - or it can move around and she can walk with it. Riley's not too into that feature right now, but the PT is hoping she'll like being more independant and start walking around more.

Riley has been walking more and more without holding our hands lately, which is so exciting! We don't leave her side because if she falls she doesn't catch herself at all, but it's very nice to see her walking more!

UAB visit and a general update

2009-06-26T18:36:00.000-05:00

Today we went to Birmingham to visit Dr. Percy and Jane Lane. The first thing I want to point out is driving to Birmingham and back in one day is exhausting! Next time we are staying in a hotel the night before. We brought the whole family this time and everyone did very well.

Riley overall is looking good. They think we should get her a gait trainer though - she really should be standing a lot during the day but she doesn't like standing without holding our hand so rather than us becoming the stander, we should get one for her. She has a PT appointment Tuesday, so I'll talk about it then.

She hasn't gained any weight since our last visit though, so I need to make sure to add butter and sugar to everything! Afterwards we went to the Cheesecake Factory for lunch, where she ate lots of greasy cheese pizza. Then we also stopped at Dairy Queen and got her some ice cream so we're off to a good start. :)

I haven't updated much lately - summer is keeping us busy, busy! We joined a gym and I finally got brave enough to take all the girls to the childcare and I'm so glad I did. I really was just worried they wouldn't know how to handle Riley, but as it turns out I didn't need to worry at all. I am so impressed with this childcare - we've seen them helping Riley "draw", and they have her play out on the playground. Most of the time they feed her snacks, since that's her favorite thing to do, but at least they don't sit her down and leave her in one spot the whole time.

We also got a membership to the country club that is part of our neighborhood so we have TONS to do now. I've been taking tennis lessons, and Mitch is already on a league. And I've gone to a ladies golf clinic they have once/week and Mitch and I have been able to golf together a few times now. But most of our time is spent at the pool! Unfortunately even the pool is pretty hot for Riley - but we take her in once it shades over, which isn't until after 7:00 at night. I should probably try mornings but the pool doesn't open until 10:00 and it's about 90 degrees by then - Riley does not like the heat!

So that's pretty much been our summer - go go go! In a couple weeks my mom flies down and then will drive up to Wisconsin with me. Then before we know it we'll be back and school will be starting. Time flies!

Addy's prayer

2009-06-10T14:02:00.000-05:00

Addy went to Vacation Bible School last week and made this. It made me laugh and cry at the same time!

"I pray for Riley my sister because she has a really bad problem so I still love her"

She read it to me, so I'd know what she was trying to say. She can read pretty well but spelling is another issue. :)

summertime!

2009-06-10T13:50:00.001-05:00

School has been out for a few weeks now and we are enjoying the summer! The weather has been beautiful (and hot!) so we've been spending time at the pool when Mitch is home. I can't see myself taking all 3 by myself - Morgan is quite the little daredevil now and pretty much needs one person to just watch her the whole time. But we are having fun for sure!

Mitch's sister is here with her family - I need to remember to get out my camera one of these days. The kids are having so much fun together and we are spending lots of time in the pool and lake. Our boat is finally getting some use!

IRSF Conference 2009

2009-05-25T20:22:00.000-05:00

We are back, and this year's conference was awesome!!! Not to say last year's wasn't, but last year was so soon after Riley's diagnosis and I was in a fog a lot of the weekend. This year I was able to have fun and really soak up a lot of the information.

The resort we stayed at in Leesburg, Virginia was gorgeous! The conference kept us busy, of course, but we did manage to get out for about an hour one day and hit golf balls which was a great way to unwind after a long day of sitting in sessions!

Sunday night we went out for dinner with a couple we met last year, and their gorgeous daughter Caitlyn. We also met more people this year, so they joined us too! We all have 4 year old daughters so it's great to think we'll always be together in this - and we hope to meet more people next year. We found out next year's conference will be in Colorado - fun!

After dinner we enjoyed the beautiful Virginia weather and sat outside talking, laughing and listening to the talented Cliff Fry play his guitar. It was the perfect end to a great weekend!

Even though it was much less stressful to go without the kids this year, I have to say I missed this smiling face! And the other two smiling faces, who were busy getting dirty outside when we got home so I only got a picture of Riley. :)

Washington D.C.

2009-05-22T06:36:00.000-05:00

Mitch and I are going to the IRSF conference in Virginia this weekend, but we decided to fly in a day early and spend a day seeing the sights! Yesterday we walked around (and walked and walked!) and went in a couple of the museums.

Last night we met my friend Ellie and her boyfriend Rich at a delish Belgian restaurant.

Today Mitch and I agreed we'd go running down the mall - even though we both would have liked to sleep more. My generous mom is back home with the girls and it's just the two of us here, so we figure we'll get to catch up on our sleep at some point this weekend!

Later this morning we're meeting Mitch's cousin at the Pentagon, then we'll probably try to see a few more sights before heading to Virginia for the rest of the weekend. One day is not enough to see much in D.C. so we'll definitely have to plan a trip back sometime!

IEP meeting and a big fat bummer

2009-05-18T20:25:00.000-05:00

We had Riley's IEP meeting today for next school year. All went well with that - we agreed with their goals and didn't need to fight anything, not that we expected to. After it was over we stayed to talk with Riley's teacher and she dropped a bombshell on us - she's moving. :( She was supposed to be Riley's teacher next year and we LOVE her so we were so excited for that. She loves Riley too - she was crying while she was telling us. She has learned so much about Rett Syndrome and has become such an advocate for Riley. She is WONDERFUL. I cannot say enough good things about her. We are going to miss her. And it makes me sad that Riley only has 2 days left to be with her. :(

On the mend

2009-05-16T11:02:00.001-05:00

I think Riley is finally getting over whatever it is she had.

Still a lot of this going on:
But she is eating better and her fever is going down. I think (hope) it'll be gone tomorrow and she'll be able to return to school on Monday. There are only 3 days left of school for the year so I hope she can make it to them!!

I got it

2009-05-14T17:46:00.000-05:00

Not really something I wanted but I figure enough of the normal every day things are harder with Riley's diagnosis, so why not make some things easier.

Swine Flu

2009-05-13T09:40:00.000-05:00

Ok I am not usually much of a hypochondriac, but seriously. Riley is sick and I'm getting more and more worried. I don't think I've ever seen her this sick.

Compare to swine flu symptoms.

fever, which is usually high check - took her temp yesterday afternoon and it was 103.8. this is day 4 of fevers like that
cough check
runny nose or stuffy nose negative on that one at least
sore throat check. took her to the doctor Monday and she thought Riley had strep even though test was negative. Her throat is VERY red.
body aches hard to say on that one, she can't exactly tell me!
headache same as above
chills check - even Addy commented on how shaky Riley was yesterday
fatigue or tiredness, which can be extreme BIG check. I think Riley has been awake, oh, a TOTAL of 2 hours in the last 4 days?
diarrhea and vomiting (sometimes) check

When I took her to the doctor (not her regular doctor, who was booked up Monday) they drew blood but didn't actually tell me what it was for. I am VERY thankful Riley happens to have her regular 4 year checkup this afternoon with her doctor. She has been sleeping constantly and has hardly eaten a thing since Friday night. Ugh. :(

Jessica's Wedding

2009-05-12T10:49:00.000-05:00

We are back from our whirlwind weekend in Wisconsin!

The girls and I survived our drive from Mississippi to Wisconsin, and it actually wasn't that bad. Addy can be quite helpful when she wants to be. Mitch flew to Wisconsin Friday night (he was at a conference in New York) and spent the weekend with us. Then he and Addy flew home and my mom drove back with me, Riley and Morgan. It was a pretty exhausting weekend but so much fun!

The best part was ... Jessica is married!! She was such a beautiful bride - as you can see here!

Jessica had LOTS of kids in her wedding - so all the girls got to play a part. Addy was a "ring princess" :) and Riley and Morgan walked up and each placed a bird on a tree that represented a person that could not be at the wedding. Very sweet.

Unfortunately, most of the pictures were taken on my mom's camera and she inadvertently deleted them. I'm really hoping someone else took some of all the kids! At least we got a few.

Addy enjoyed every part of the weekend, especially the chance to wear Jessica's veil!

Instead of a cake Jessica had a table full of different desserts and Addy really liked that too, as did the rest of us!

The worst part about the weekend was that Riley got sick. You can see her in the previous picture sleeping in Gramma's arms which is where she spent most of Saturday. She at least woke up long enough to walk down the aisle during the wedding - with the help of Daddy and Aunt Becky. She has not been awake more than about 10 minutes at a time since Saturday. We hope she starts feeling better soon!!

Happy May Day!

2009-05-01T10:23:00.000-05:00

Wow I can't believe it's May already. Less than 3 weeks of school left! We have lots planned for this month - all very exciting stuff!

I was looking through pictures this morning - since our computer seems to be dying I figured I better get them up on Snapfish so I don't lose any!

Compare Addy on her 4th Birthday to Riley on her 4th Birthday. Yes they are wearing the same shirt! Everyone is always saying they look alike, but they seem quite different to me. Look at all that hair Addy has. I wish Riley's hair would grow! Oh well, she's just as cute with shoulder-length hair. :)

Happy Birthday, Riley!!!

2009-04-25T15:12:00.000-05:00

Guess who is 4 today!!

I set us all up on the local news channel's birthday club. Mitch is soooo excited to see his name pop up on his birthday (ha).

Yay for cake! I think she was more excited for the ice cream though.

We went with an aquarium theme, which turned out to be perfect since she got an aquarium video from Gramma! She fell asleep watching it a little while ago. :)

Here she is getting nice and snuggly with Addy, ready to watch her new video. Cuties. :)

Tonight we are going to a BBQ fundraiser for Hope Hollow Ministries. Should be fun!

beautiful weather!

2009-04-24T09:06:00.001-05:00

I really need to change my profile picture - it is definitely not winter here anymore! It has gotten up to 90 the last couple days and looks to be the same for the next few days. It's not a HOT 90 though so it feels great!

On Thursdays we have an hour to kill between Addy's dance and gymnastics classes so we have been going to the park since the weather has been so nice! I finally remembered to take my camera yesterday.

Mostly Riley and Morgan swing while Addy runs around and plays with whatever kids are there that day. :)

field trip

2009-04-22T08:31:00.000-05:00

Riley's school took a field trip to downtown Jackson to visit Horses for Handicapped yesterday. Riley had so much fun! Morgan and I went with - and Mitch walked down to meet us for a little while since we were close to where he works.

First we visited the petting zoo - they had some odd looking animals!

After the petting zoo we got in the long line to ride the horses - and of course just when we got up there Riley fell asleep!

Her teacher woke her up and rode the horse with her. Riley was a little dazed throughout the ride. :)

After lunch we went home, took naps and were off to hippotherapy so it was a day full of horses, fun! Riley laughed and giggled through hippotherapy. We are 99% sure it was the Miralax causing the fussiness. We switched to milk of magnesia and are so much happier since!

bingo!

2009-04-20T15:00:00.000-05:00

No, not the game. Although I used to love playing that!

Riley is getting a BINGO chair. I had her evaluated today and this is what they recommend.

It folds, it tilts, it has a sunshade, and it pretty much looks like a stroller. It also looks heavy. But, it'll probably be nice for walks around the neighborhood or walks around the park. I know someone who has one for her son, and I'm going to call her to see how she likes it. But as of now they are ordering it and we should have it in a month and a half, or however long Medicaid takes to approve it. :)

Can you tell who is who?

2009-04-15T08:19:00.000-05:00

We finally hung some pictures on the wall and Mitch couldn't tell who was who with these. They do look alike, I guess!

And just in case you can't - it's Riley in the flower picture, at about 3 months, Addy on her hands and knees at about 6 months and Morgan in the last picture at 4 months.

This picture is obvious, don't you think? :-)

Easter!

2009-04-15T08:06:00.000-05:00

We had a good, but laid back Easter. When we got home from church the Easter Bunny had come! Riley sees the trail of jellybeans:
Morgan and Addy collected (and ate) them.

Morgan enjoyed feeding Riley jellybeans. If only she would feed her when we want her to!

Riley wasn't sure what to think of them at first.

This year the Easter bunny left clues that led them to their baskets. Addy is becoming quite the little reader and was able to read all the clues, and only stumbled on a few words! Go Addy!

FMI, mostly

2009-04-15T07:55:00.000-05:00

About a month or so ago, Riley switched to the generic form of Depakote. She was super duper crabby and it was really hard to get her to eat anything.

We switched her back to the brand name, went to the beach for Spring Break and within a day or two she was HAPPY HAPPY SO HAPPY! This was like the old Riley back again, back before September-ish when her crabbiness started.

We got back from spring break and her teacher commented on how wonderful she was - she really felt like Riley was getting the hang of communicating and paying attention more and just overall fantastic! She was also VERY vocal - lots of squealing and yelling out, but happy!

Last week she got sick and came down with croup and slept most of the week away. Now she is on the mend but crabbier. :( I want the happy happy Riley back, I LOVED having her here. I'm hoping she is still just sick a little and will continue to improve. When Riley is happy, we are all happier.

And just for the record, she is now 29 pounds and 39 inches! Wow, she might actually reach 30 pounds soon!!

hippotherapy

2009-03-25T08:20:00.000-05:00

While Riley seems to have excellent stomach muscles, at least judging from the way she holds her legs up in the air, her balance is pretty poor. So we decided to try hippotherapy - which is therapy on a horse.

At first Riley was pretty apprehensive about sitting on such a large animal

When she is uncomfortable she does more breath holding - and you can see her pushing her little belly out in this picture. :)

But after a while she decided it wasn't so bad, and even laughed a little!

This is kind of fun!

Here she is probably happy to be back on the ground. She also really seeemed to like the feel of the horse, and even leaned into him and snuggled a little!

The only downside is that the therapy farm is an hour away. We made a 10 week commitment to try it out, and if it really seems to be helping the long drive every week will be worth it!

more trip pictures

2009-03-24T19:45:00.000-05:00

The weather in Gulf Shores turned MUCH nicer and sunnier (is that a word?) so we had lots of time on the beach! The only person that didn't like it so much was Morgan, so she was absent from many of the pictures.

First and most fun - Riley's friend Avery came to visit! She is so adorable, and gave Riley some kisses on the shoulder!

I think this is the one and only time Morgan actually got out of my arms on the beach. Sometimes she sat on my lap and played with a bucket and shovel, but mostly she just wanted to stay inside. Maybe she'll have more fun next year!

Addy made friends wherever she went and had a ton of fun!

I love this picture of Riley!

Riley fell once and landed in the water - she giggled so much that we just let her sit there with the water coming over her legs. She loved it!

I had to take a picture of the sleeping angel.

Gulf Shores

2009-03-17T09:07:00.000-05:00

Despite some rain yesterday we are enjoying our trip! We spent some time on the beach on Sunday and everyone loved it!
Addy played in the water a little, even though she swore she'd never swim in the ocean because there might be sharks.

Riley was so incredibly happy on the beach which was a HUGE turnaround from last week. We're not sure if it was residual strep throat or a side effect from generic meds but we had lots of screaming last week and our first big smiles in a long time on the beach!

Riley did some walking on the sand, a little unsteady, but she seemed to enjoy it and loved it when the water came up around her feet!

All that walking and the sound of the water wore her out though!

We also spent some time in the indoor pool - we really need to get Riley in swimming lessons since she loves the water so much!

Here she is spending some time in the hot tub with daddy

Morgan was not so thrilled about the water - but of course Addy was a little fish.

Riley did lots of swimming with mom!

Today is looking (or should I say fixin') to be a beautiful day - in fact we are going to go claim our spot on the beach soon!

Morgan's 2nd Birthday

2009-03-09T08:39:00.001-05:00

Here's my big baby on the day she was born. Morgan weighed in at 9lbs 7oz which was a full pound bigger than Riley, and 1 pound 1 ounce bigger than Addy. I figured it was because I held her in longer - I was so determined to be in our new house before she was born. And it worked! Morgan arrived on the day we moved in. She was born at 7:30am and Mitch left at 8:00 to go meet the movers. What a day!

Unfortunately strep throat has been running around our house and Morgan came down with it on her birthday. Since she was feeling lousy we didn't get many happy smiles.

As you can see here:

She perked up after she got to eat some of the cake though!

And she loves her new "ride ride".

All content after opening her presents.

final cake class

2009-02-27T07:58:00.000-06:00

I am DONE with cake classes now and I'm pretty relieved. I have fun doing it, but trying to decorate a cake in class is stressful, I prefer having my own kitchen and my own space. And this class was about fondant which is yuck. I like working with it, and it looks pretty, but eating it - who wants a super sweet chewy later on top of their yummy cake? No one in my family.

Mitch has a birthday party at work so he took my final cake for it - I didn't cover it in fondant but just added fondant cutouts. And it was my first attempt at making a bow, which didn't turn out perfect because it was really humid yesterday and my cake carrier smashed it a little. But it was pretty easy and I might have to try it again sometime!

bye-bye, Starbucks

2009-02-22T15:26:00.000-06:00

Today at 6pm our Starbucks is closing. Wah.

I admit I've only been there a handful of times - while I love my coffee I am usually just fine with making it at home rather than spending the exra money.

I guess I will miss the ability to go, more than I will actually miss Starbucks. If that makes sense. Yes, there is another one just down the street, and there are others in the area. But this is the nearest drive-thru, so it really sucks that they're closing this particular one!

Life goes on.

one year

2009-02-19T08:30:00.000-06:00

One year ago today we got the call confirming Riley has Rett Syndrome. This hasn't even been a hard day to come to - it was harder for me the year before we got her diagnosis, not knowing what was going on. As much as I didn't want to hear she had Rett Syndrome I was somewhat relieved to have an explanation and be able to move forward.

I wish I could say she was walking as well as she was a year ago, but hopefully we can strengthen her little legs up and get back to that point. Preschool is wonderful for her and more and more she is learning to communicate with us using her eyes.

I am so grateful for the friends I've made along the way of our journey with Rett Syndrome, and I will continue to fight for a cure for this disease!

days like these

2009-02-07T15:13:00.000-06:00

Are why I'm glad I live in Mississippi instead of Minnesota! The weather is just beautiful so while Mitch and my dad are golfing my mom and I took the girls on a walk around the pond at their apartment complex. The path is about 3/4 of a mile long and I'm happy to say Riley walked the whole way! She didn't do much walking last week when she was sick. A day here and there is expected but 3 days in a row of her not wanting to walk gets us a leetle nervous.

But as you can see here she's happy as can be walking outside in the fresh air! For some reason Morgan never wants her picture taken outside!

As warm as it is outside I'm sure the water was cold - Addy is crazy. And if you notice the stuff on her cheek it was World Thinking Day at Girl Scouts this morning and she had some Japanese letters painted on her face. It's not just dirt. :)

We stopped for a while so Riley could sun herself.

Just like the turtles. :)