Addison & Breslyn

Making so much progress!

2011-12-31T11:03:00.001-05:00

All of a sudden, Addy has really started making great strides physically. I'm not sure if I can contribute it to just one thing because it seems that so many things happened simultaneously.

Addy went through 4 weeks of casting to stretch her ankles out and be able to get a better fitting pair of braces which she got at the end of October. Just as this was happening, we moved into our new place which has completely opened up her world. Being in an open ranch has allowed her to be up on her feet more doing many more things for herself and gaining a stronger sense of independence.

A couple of weeks after moving, her school therapist suggested trying electric stimulation on her quad muscles in outside therapy. We immediately began doing that while at the same time she started walking on a treadmill in therapy. Just to be able to see her maintain a consistent walking pace for a great length of time was incredible. After a couple of sessions of walking on the treadmill, her outside therapist went back to trying her on the loft strand crutches which she had tried many times previously, requiring a great deal of assistance. Low and behold, she was almost completely independent with them. I was amazed. Even more amazing is that she brought them home (borrowed) from therapy with her last Thursday and has been all over the house with them independently. I can hardly believe it! The amount of leg strength it takes to use the loft strand crutches is far greater than what she is required to use when walking with the walker. The walker allows her to cheat a little bit more and rely on the strength of her arms.

All the while these things were happening we were awaiting an appointment to pick out a wheelchair for Addy. She currently had an orthopedic stroller that she would use when we would go places that required a lot of distance walking, but the stroller required us to push her and didn't allow for her to have any independence. The wheelchair will allow Addy to go where she wants when we are out and about. We ordered the wheelchair mid-December and just picked it up yesterday. That was the fastest turn around I have ever experienced for someone getting a wheelchair. Addy is excited about it and we are too.

So, a lot of things happening in Addy's world all for the better. Here are a few pics of her new equipment. The crutches are borrowed and she will be getting hey own sparkly pink pair soon along with an electrical stimulation machine for home use.

Sesame Place

2011-10-16T13:13:00.006-04:00

Last weekend, we headed to Philadelphia for a Monday morning appointment at Shriners Hospital to get Addy's casts changed. We decided that since we were traveling that far, that we should make a fun weekend out of it for Addy since she had to ride in the car so long. So Sunday, we went to Sesame Place. It was a very hot day and it was crowded, but Addy seemed to have a great time. Sadly, we will never visit Sesame Place again because of how poorly we were treated in regards to her disability. I literally had to fight for an entire hour to be able to allow Addy to ride the rides. In today's society, where disabilities are very prevalent, that should no longer need to occur at such large public facilities. They should be able to accommodate all people. Corporate will definitely be receiving a letter from me!

Niagara Falls

2011-09-25T20:47:00.008-04:00

Daddy was leaving this weekend for a work trip to Niagara Falls so we decided to tag along with him and make a family trip out of it. We all had so much fun. I typically am not a "spur of the moment" type person. I operate much better when things are planned, but surprising this trip was so worth it and we are so glad we went.

The view across the street from our hotel.

Margaritaville!

The Falls

I love this picture!

Getting ready to get on the Maid of the Mist

All wet!

The Arcade

Eating at a Pizzeria at night

Brick City (Legoland)

Checking out how high up our hotel room is

Daddy's work set-up

A Day at the Apple Orchard

2011-09-18T13:59:00.010-04:00

We knew it was going to be a beautiful day so we decided to take the girls to Westview Apple Orchards. We had such a fun day. Breslyn quickly caught on to what apple picking was all about. Grab an apple off the tree, eat it and when it accidentally drops out of your hand, just grab another one!

Breslyn & Addy

2011-09-14T12:00:00.004-04:00

Breslyn is finally a full fledge walker...I was starting to think the day would never come!

AND

Addy got a really cute haircut!

Labor Day Camping 2011

2011-09-14T10:54:00.012-04:00

This year for Labor Day we went to a different campground. We tried Charles Mears State Park in Pentwater. The campground was nice because the walk to Lake Michigan was just around the corner, however the camp sites were a small cement pad and the rest was sand. Not exactly the best set up for Addy to walk around and definitely very dirty, but the kids had lots of fun anyway.

Our group consisted of The Coffindaffers (Tara and Kyle), The Courtney's, The Seward's, The Coffindaffer's (Keith and Corrine), and us. We had a big group and we had a lot of fun planning theme nights for our dinners. We also got a chance to walk into the town of Pentwater a couple of times. Not the best weather we have ever had, but we made the best of it.

One of the coolest things about the campground is that they had a beach wheelchair for use. We have never encountered a beach wheelchair before. Lugging Addy and all our things across sand is very difficult and the wheelchair was a lifesaver. Now I'm begging Aaron to try and build us one that we can take apart and take with us whenever we go to the beach.

Krystal Lake Campground

2011-09-14T10:22:00.011-04:00

In August we took a camping trip to Krystal Lake campground located near Lapeer. Grandma Kris, Grandpa Bub, Grandma Marci and Papa Rick all came with us. It was a very nice private campground. It had a pool, a beach, paddle boats, playgrounds and very nice sites. Definitely a place we could see ourselves going back to.

Shriners Hospital in Philly

2011-09-14T10:04:00.005-04:00

I am very far behind in posting....so here goes!

Addy and I took a trip to Shriner's hospital in Philadelphia in mid August. This hospital has an orthopedic doc who specializes in dealing with the issues that having Arthrogryposis presents. So, away we went. A huge thank you to Continental Careforce who paid for our airfare to get there and back. While there we stayed at the Ronald McDonald house in Camden, New Jersey because the house in Philly was full. It was quite an experience trying to navigate my way around several cities that I didn't know while having Addy in tow, but we successfully did it!

When we arrived at the Ronald McDonald house, the room we were given just happened to be the Dora room. Addy was in heaven. We arrived the day before her appointment so we went downtown Philly and went on Ride the Duck. It's a sightseeing tour that takes you on a bus ride through the city and then it turns into a boat and you get a short ride on the river. Addy had a great time. We then walked downtown, grabbed a cheesesteak sandwich and saw the Liberty Bell.

The doctor's appointment went well. He does feel as though she needs a new set of braces and perhaps even a different style. Her ankles are so tight to the point that she is walking on her toes. He wants to put her through a series of casting along with new braces made by the orthotist that he works with. Our goal is to get her ankles loosened back up so that she can get her heels on the ground and be able to progress forward to independent standing. The only problem with this is that we will have to travel to Philly several more times because he wants to be the one to cast and brace her. Our first appointment to go back is October 24th. We will probably make the 11 hour drive next time around....yikes! I am hopeful that we can get Addy moving in the right direction. Will keep you updated.

And a big THANKS to Shriner's hospital, Continental Carefore and the Ronald McDonald organization for all you do for kids. This wouldn't have been possible without you.

Annual 4th of July at the Kota Cabin

2011-07-20T11:53:00.007-04:00

Our annual 4th of July trip to Standish was once again a blast. During this trip we celebrated Aylee's first birthday and Addy got to take her first ever ride down the Rifle River in a raft. She had lots of fun and did much better on the trip than I thought she would. Guess we will have to make it a tradition!

Seven Lakes State Park

2011-06-26T21:25:00.007-04:00

Due to the nice weather we expected for the weekend, we booked a last minute camping trip. We wanted somewhere close since we were going with just our family and only for the weekend. We chose Seven lakes State Park in Holly. It's a very small campground, but we loved it. You could walk to the beach from any site and all the sites were on cement pads with awesome grass. It was probably the nicest camp site that we have ever had. We will definitely go back.

Storybook Gardens

2011-06-20T20:56:00.011-04:00

This last weekend we ventured out to Storybook Gardens in London, Ontario with the Bender family. The girls had a great time. I think the pics speak for themselves.

The Girls' Birthday Party

2011-06-05T20:41:00.006-04:00

Addy's 4th Birthday Day

2011-05-08T13:27:00.009-04:00

Opening presents.....

Playing outside....

My new ride and my favorite present of all...

Dinner at the Rainforest Cafe...

Happy Birthday Addison Christine!

2011-05-07T10:00:00.001-04:00

Dear Addy,

Oh how the time flies and I can't believe your 4 years old already. It seems like just yesterday they laid you on my belly and a love like only a mom can describe instantly began. In this instance, you became my first born and my precious angel.

I knew from early on that you were going to be a fighter and in these short four years I have seen you be just that. You are stronger than you will ever know. You have touched the lives of everyone you met and you create constant smiles for those around you.

In the last four years you have turned me into a mom, a teacher, a therapist, an advocate, a coach and a friend. I will forever remain all of these to you. You have taught me strength and determination more than anyone ever could have. I know that you will continue to amaze me as the years go on.

This past year, you became a big sister and you have taken on this role very seriously and very effortlessly. I have watched your kindness and patience with Breslyn and admire what a great big sister you have become. I know that you will continue to be a great teacher for her as you grow together for years to come. I can't wait to see how your relationship with her will blossom.

Your three year old year also brought the start of school for you. I love that you love school and I have loved watching you learn things. I look forward to every evening when you come home and tell me all about your day and what you learned. I love how intuitive, imaginative and creative you are.

I am sad on this day that my "baby" is growing up, but excited to see what the future has in store for you.

Addy....don't ever stop being you and always keep that smile on your face. I love you more than you will ever know.

Love, Mommy

Easter

2011-04-24T20:11:00.005-04:00

Hanging in the sun

2011-04-24T17:43:00.005-04:00

We love it when it's warm enough to play outside. I have two girls that just love to swing!

Easter Bunny

2011-04-09T12:14:00.008-04:00

Today we visited the Easter Bunny. Addy was excited to get dressed up in her Easter dress. I thought that Breslyn might be scared. Lately she has been showing some stranger anxiety. Both girls did great, but it's definitely getting much harder to get pics of both girls looking at the camera and smiling.

Surfari Joe's

2011-04-09T12:05:00.003-04:00

Last weekend we ventured to out first indoor water park experience with the kids. We met the Coffindaffer's there for our annual Mills/Coffindaffer weekend. Addy was so excited about going to a water park. She went down the largest slides there were and couldn't seem to get enough. The pictures are not great as it was difficult to have the camera around all the water

Fun in the Sun

2011-03-06T14:15:00.016-05:00

This year our trip to Gulf Shores, Alabama couldn't have been better. We had beautiful weather the entire week. Addy was old enough to completely understand that we were going on vacation, flying on an airplane and going to have fun playing at the beach among the many other things we did.

Looking cute!

Beach Time- this was Breslyn's first experience at the beach. She had a double ear infection the entire week we were on vacation, but she still managed to have a little bit of fun.

Pool time- we have 2 water babies on our hands

Just out for a stroll and having fun

Off to the zoo

Boat Ride to see the dolphins- this was by far one of the most fun things we did on our trip. It was amazing to be so close. Addy had fun taking a boat ride and was thrilled each time a dolphin jumped up just a few feet in front of her.

Build A Bear- Addy went to the Build A Bear workshop for the first time ever. She made a bear that she named Sally and had lots of fun while doing it.

Fun with my girls

Breslyn's First Snow Play

2011-02-02T15:30:00.004-05:00

Bowling with the Benders

2011-02-02T15:21:00.003-05:00

Addy's 1st time bowling

Snow Play

2011-01-11T14:19:00.004-05:00

Addy has been so excited this year about going out and playing in the snow. We haven't had much lately. So over the weekend, we got her dressed up and out she went. All she talked about was making a snowman, but it wasn't packing snow so instead she made snow angels and did her best to make a snowman on the ground. Mom stayed home in the nice warm house with Breslyn:)

Christmas 2010

2011-01-02T17:26:00.006-05:00

We had so much fun this Christmas with two kiddos. It seemed we had parties galore between Addy's school parties and daycare parties and then celebrations with the family. Addy was at a perfect age this year to enjoy the magic of Christmas. She asked Santa for a bunny house which seems to be her favorite present. Santa also brought her a Leapster Explorer which she is still learning how to play. Breslyn got lots of blocks, books and dump and fill toys. We are sad that the season is over, but know that next season will be even more fun!

Busted! Getting into presents under the tree.

The Christmas Season

2010-12-01T19:04:00.003-05:00

As we begin the Christmas season this year, one of our annual traditions is cutting down our real Christmas tree. This year since we were at Grandma's house over the Thanksgiving weekend, we decided to go to a tree farm near her house. It was a very cold and windy day, but both girls were troopers and had a lot of fun. After the tree cutting, we enjoyed some hot chocolate, cookies and candy canes.

Thanksgiving

2010-12-01T18:58:00.005-05:00

Thanksgiving was celebrated at Grandma and Grandpa Mills' house. We spend 4 days with them over the holiday. We get to eat, eat and eat some more. I get to shop on Friday and we get to hang out and relax all weekend. Now that Breslyn is eating baby food, she got to enjoy Thanksgiving food too with some sweet potatoes. She loves eating and so far loves everything we have tries with her. Fun times!!!

Baptism

2010-12-01T18:48:00.005-05:00

Breslyn was baptized on November 21st. Aunt Colleen stood up as her sponsor and godmother. Breslyn did very well during the whole ceremony which I must say was very odd. We have a new priest at our church, but not new in terms of straight out of the seminary. For being a seasoned priest, he acted like it was his first time ever doing a baptism. Everything was read straight from the book which seemed very impersonal. He tried hard to crack some jokes, but they just weren't funny and the microphone he was using just didn't sound great. But....aside from that our girl looked beautiful. Thanks to all who attended. We celebrated afterward with a dinner at Buddy's pizza and it was delicious.

Halloween

2010-10-31T20:45:00.004-04:00

Happy Halloween!

Addy had a great time trick-or-treating this year. She got a stash of candy all from going down one street. I think that people see this cute little girl on a walker coming their way and they are over generous. Problem is that we are really having to watch Addy's weight lately, so we made a deal with her. She was allowed to eat 2 pieces after we got home and pick out 10 pieces to save for herself. The rest we "sold" to grandma in exchange for money to make a trip to the toy store. At least her physical efforts of walking all that way won't go unaccounted for. We will make our toy store trip next weekend.

We started out with Breslyn in the stroller, but it was just too cold and we ended up taking her back to the warm house. Maybe next year:(

Halloween parties

2010-10-31T20:29:00.004-04:00

This year was full of Halloween parties. Our first was at the Bender's house for a pumpkin carving party. The kids had a lot of fun carving pumpkins, eating, playing and bouncing. Thanks for having us Benders.

Next up we had parties at school. Addy had fun going around to all the centers and taking part in the Halloween parade.

Busy Busy Weekend!

2010-10-10T18:33:00.011-04:00

We had a very busy weekend full of very fun things. Scroll on down to see how much fun we had.

On Friday, we took Addy to see Yo Gabba Gabba. We kept telling her that we were going to be taking her to the show and I think she envisioned seeing them on the movie theater screen. She was in absolute awe to see the real live characters appear on the stage. The smile on her face was priceless and it didn't leave her face the entire night.

We even got a fun surprise before the show started. We were on our way to eat at Hockeytown Cafe which is next to the Fox Theater and as we were walking down the sidewalk, DJ Lance was getting ready to hop into a cab. He didn't have his orange clothing on, so at first Addy didn't realize who he was. He was being mobbed my parents who wanted pics with their kids and we were able to grab a pic as he high-fived Addy. Very cool!

Then Saturday morning we headed to the doc for Breslyn's 4 month well visit. She was 14 pounds, 4 ounces and 26 inches long. Her length is off the charts so I think that we will have a tall girl. We got the go ahead to start the rice cereal feeding and so that's just what we did. She definitely didn't take it as easily as Addy did her very first time, but we will keep on practicing.

We then got to watch our beloved Spartans dominate the Wolverines. Such a fun game to watch. Here are some pics of our most recent photo shoot. We are showing off our Spartan pride. Go Green!

Then Sunday since it was so beautiful outside, we headed to the apple orchard. Addy was very excited and couldn't wait to go pick apples. We played on the toys before it got real busy, feed the animals, ate lunch and then went to pick apples. Addy did awesome with her walker for as much as she walked. She's such a trooper, never wanting to stop and give up. Breslyn did very well. She got her first taste of a real apple and enjoyed licking it, even getting mad when I took it away.

Addy's First Day of School

2010-10-03T21:14:00.004-04:00

Well, I am way behind on posting, but better late than never. Addy started school this year for the first time. She is attending a preschool program for kiddos who have physical impairments. As crazy as it may sound, mom also got a job in the same program this year. I have the K-2 classroom which is right next door to Addy's preschool room. I was very nervous as to how this would play out. I prepped Addy well in advance to let her know that when she got to school she would see mom everyday. She was told that she is allowed to say hello to me in the morning when she first comes off the bus, but then she has to go to her classroom. Believe it or not, she is doing wonderful with it. She says hello to me in the morning and goodbye before she leaves at lunch time and other than that she has not become dependent on mom being there.

She gets to ride the bus to and from school which she absolutely loves. She loves school too. She talks about it all the time, plays school and home and enjoys her homework each week. Keep up the good work Addy. I hope that you will always be as excited about school as you are today.

Clubhouse

2010-10-03T21:02:00.004-04:00

Addy loves to build. I think she takes after her Grandpa Bub who is a builder. She loves to build with anything she can get her hands on. Blocks and legos are her current favorite toy. Here are some cute pics of her building a clubhouse with daddy....all her idea, including the sign.

Labor Day Camping

2010-09-11T21:03:00.006-04:00

Off to Higgins Lake for camping again this Labor Day. Unfortunately the weather did not cooperate with us this year and it rained off and on the whole time we were there. It was also very cool. The kids still had a great time despite the weather and so did the adults. Enjoy the pics, there are a lot of them.

Just Being Cute

2010-08-15T14:03:00.003-04:00

Red Oaks Waterpark

2010-08-15T14:01:00.003-04:00

Ionia Free Fair

2010-08-15T13:59:00.002-04:00

Some people just don't get it

2010-08-02T18:14:00.003-04:00

Where to start.....Addy has loved to dance since she has been able to get up on her feet. She is constantly dancing to music or singing her own songs to dance to. As she has been getting stronger on her feet, I have seriously started thinking about enrolling her in a simple dance class. She wants to tap. It's all she talks about.

Each week she dances into her therapy and out of therapy. Her therapists have long known that she loves to dance. So about a month ago I got a call from one of the therapists that she had called the dance studio where her own girls attend and the lady was very open to this idea. So I called her. The original idea of hers was that come fall, she would like to start a dance class specifically for students with special needs. However, when I spoke with her on the phone, she told me that she would be willing to allow Addy to join the summer (month of August) dance class and in the fall if not enough kids could be rounded up for the special needs class, then she was welcome to join one of the ongoing classes. So, me, got very excited about this. Addy was thrilled. I got on the website, downloaded the information and registration and promptly sent in my money to sign Addy up for the August tap dance class. The class meets once a week for 4 weeks, a half hour each time and is for 3-5 year olds.

So, over the last several weeks, we prepared. We talked about it, got excited about it, went to the shoe store and bought tap shoes, went to the store and bought dance clothes and even took our tap shoes to therapy so her PT could help her get used to them a little. This little girl is so excited!

Now for the gist of my story.....some people just don't get it. I get a phone call today from the owner (same lady I originally spoke to) and she states that the class has gotten bigger than originally anticipated and that she noticed that I wrote on my registration that I would be willing to into the class and help Addy physically manage. Well, apparently parents are not allowed in the class and if she makes an exception for one then she would have to make an exception for all. ARE YOU KIDDING ME!! She claims that she would receive numerous complaints if she allowed me to go into the class. COME ON....you don't think that other parents who see a little girl walk in with a walker would understand that the parent is in there for support purposes? She does not think so. I got to hear the line...."I've been doing this for 21 years and I know how parents are."

So, here's the kicker...her offer to make this all better is to give Addison a free private dance lesson. That is so not what this experience is all about. Addison will never be a dancer. This experience was suppose to allow a little girl who is very excited about dancing, participate with her peers to the best of her ability. She obviously doesn't get that. Addy is so excited to go in and dance with her peers and follow the lead of a teacher. We have spent numerous hours talking about what will be expected of her when she attends class.

The lady obviously knew I was upset and ended the conversation by saying just to come anyway and we will see how it goes. Do you really think I want to go now and take my child to a place where I already feel like she isn't accepted? I think not!! She needs a lesson on what including kids with disabilities is all about.

Addison will never be a dancer, she will never play sports, she won't be a gymnast. All I was asking for was for her to have the experience and make her feel welcome.

Now I have to try to explain this to a little girl who is so excited to dance......

Baby Pics

2010-07-22T20:47:00.002-04:00

Petoskey

2010-07-22T14:59:00.005-04:00

We spent a long weekend in Petoskey just recently. Young's State Park was our beach of choice, we relaxed, ate lots of food and spent one rainy day indoors at a Putt-Putt Golf Adventure place. This was Addy's first time playing miniature golf.

Marysville Spray Park

2010-07-22T14:55:00.002-04:00

We took an impromptu trip to the Marysville Spray park a couple of weeks back. Here's Addy having fun.

No words can describe....

2010-07-11T21:44:00.001-04:00

how this moment felt....Watch and Enjoy!

Make video montages at www.OneTrueMedia.com

4th of July

2010-07-06T21:06:00.011-04:00

Once again we went camping for our annual 4th of July trip to the Kota cabin in Standish. Breslyn did great as a first time camper. Addy had lots of fun and mom and dad realized how exhausting it is to now camp with two kiddos! Still lots of fun though.

This year we had 2 newborns to initiate to the camping scene. Breslyn and her future BFF, Aylee who was born 10 days after Breslyn. Enjoy the pics!

4 Wheelin

Look at what good tastes we have!

Fun in the sun

Cupcake decorating time (or in kids perspective- cupcake eating time!)

Bundled up

Playing on the swingset

Arts & Crafts Time

Cookie Making Time

Happy 4th of July

4th of July Games- Sandwich making contest

Dance Off

Exhausted!

Here's a comparison of
the Mills sisters 3 years apart.

Addy- 4th of July 2007
Breslyn-4th of Ju ly 2010

Fishfly Festival

2010-07-06T21:01:00.002-04:00

Here are some cute pics of Addy at the Fish Fly festival. We went to enjoy the fireworks. Addy had never seen a fish fly before and was very intrigued. If you look close in the pics you can see the fish fly on her hand.

Having Fun Pics

2010-06-23T10:58:00.004-04:00

Professional Pics

2010-06-20T21:18:00.005-04:00

Along with our family pic to the right, here are some other professional pics we had done. They are in an unedited form as I took them straight from the CD. Of course our printed ones are in edited form, but wanted to at least share these with you. Breslyn: 6 days old, Addy: 3 years old

Welcome to the World

2010-06-07T21:35:00.006-04:00

Breslyn Anna Mills was born on June 5th at 10:59 a.m. She weighed 6 pounds, 11 ounces and was 20.25 inches long. Labor and delivery were very quick. Breslyn is healthy and our whole family is doing well.

Addy is very interested in her little sister. She constantly wants to help with all the duties. We brought Breslyn home today and have had a first great day at home. Still not sure who exactly she looks like. I think she has a lot of Aaron's features and she definitely looks like Addy when comparing baby pics.

Serial Casting

2010-05-21T21:30:00.003-04:00

We are still waiting for "little sister" to arrive. Could be any day now!

While we wait, Addy is going through serial casting. This is a series of casts that will be put on her feet to try and stretch her ankles out. Each week a new cast is put on and the ankle is given just a bit more of a stretch than when previously placed in the cast. The end result is hopefully looser ankles with more range of motion. The doctor is thinking that 3 weeks worth might be good, which I am fortunate for as many children need about 6 weeks of casting. We decided to start now to get it over with before the weather gets very warm. The downfall is the weight. I could barely lift Addy before having the casts put on and now she's even heavier. She's sweating like crazy with them on and we can't give her normal baths so we have to do the sponge bath at the kitchen sink. With little walking boots put over them, she is still able to get around using her walker, just a little bit slower than before. We have tried to talk very positively about them and she was excited to go to school/daycare and show them to her friends. She's been a trooper so far.

Today we also had Addy's IEP to begin attending a POHI preschool program in the fall. This will be a program for students with physical and health impairments. Yes, exactly the type of program I have worked in for 8 years. It still seems surreal to me. It was very strange sitting on the "other" side of the table. I am fortunate that we have such a wonderful program in our county right around the corner from our house. Our goal is to have Addy attend the preschool portion for 2 years and then transfer back to her home school. That's our goal, but we know that we have to take it a year at a time and see how she progresses.

A new kind of "normal"

2010-05-12T20:12:00.004-04:00

It was off to muscular dystrophy clinic today with Addy. Our first experience turned into one I will never forget. The expectation was to go and see several people (neurology, dietician, OT, PT, orthotist, nurse practitioner, genetic counselor, and equipment vendor). I expected to not have much to say to everyone other than neurology. We are already followed by many of the other specialties, so I was anxious for the neurology piece to get the results of the 24 hour EEG, talk more about the Klippel-Feil diagnosis and discuss what are next step is going to be in order to figure out what is going on with her muscular wise.

Well, neurology couldn't have come at a better time. Just as we finished talking with everyone else, the neurologist walked into the room and BAMMMMM........Addy had another seizure. This was only her second one since the one in March that was presumed to be fever/viral related. I was absolutely stunned at the fact that, first off, the seizure was occurring in the first place and secondly that it was occurring with a neurologist standing in front of me. I guess if it's going to happen, there is no better time or place.

The seizure looked much like the first one.....blue lips, difficulty breathing, complete tenseness in her body, urinating herself, but eventually coming out of it okay and somewhat alert. Surprisingly, I was very calm this time around, I think because I had the doc standing there with me. Addy then fell asleep and we proceeded to talk. The EEG did show spikes in the frontal lobe area of her brain. This means that she has the potential for seizures to occur. Before the doc came in, his decision was to not start her on meds unless another seizure occurred. Well, we are now on meds. We are starting out on Trileptal with is a med given for partial seizures. Not too many side effects, just some possible drowsiness until she gets adjusted to the meds. The odd and interesting thing is that several days before the occurrence of the first seizure, Addy's speech changed and stuttering began. Over this past weekend, we noticed a change with her speech again. She was having difficulty talking and Aaron and I both noticed and mentioned it to each other. The speech change wasn't as drastic as the first time around, but there was a noticeable difference. I guess this will now be a warning sign for us.

The diagnosis of Klippel-Feil has been confirmed for sure, but the doc also thinks that there is definitely something else going on related to her muscles. The recent EMG came back normal as well as the blood test to test for dystrophy. Therefore, a dystrophy of any sort is ruled out......thankful for that, but we still don't have answers as far as the muscle weakness is concerned. Next step.....muscle biopsy. This is a procedure in which she would have to be sedated and they would actually cut a piece of muscle out of her leg to biopsy. The neurologist thinks this may be the only way to find out what is really going on. Will it change how we treat her and work with her therapeutically.....no, so with that being said, the decision now lays in our hands as to whether or not we want to go through with it. I'm torn about it. I want to know and I think it's important to have the answers for our family history, but I also don't want to put her through the procedure as I hear it's not pleasant. We will continue to talk and eventually make a decision.

We also had so many other things come out of the clinic today, but I will spare you the details as not to bore you. Maybe those will come about in another post.

So, now we adjust to a new kind of "normal". Just when I thought we were getting answers and things we going to settle down before the baby, we are hit with one more thing. All I want and pray for is that we can find this new "normal", deal with it, control it and stop finding new things.

I will leave you with a pic of "like father, like daughter"

Happy Birthday to my little girl!

2010-05-07T00:01:00.005-04:00

Happy 3rd Birthday to my precious little girl.

Dear Addison,

3 years ago today you were born into this world. I can remember how excited your daddy and I were. How you changed our lives in so many ways on this very day:

-You made us parents for the very first time
-You brought instant joy and made our "family" complete
-You turned 2 people into grandparents for the first time and brought such happiness even for those experiencing it for the second time around

Over the last 3 years you have:
-Shown us what it means to be a fighter
-Given us strength that we never thought we had
-Brought joy instantaneously to everyone you meet
-Achieved things that some may have thought were never possible
-Allowed us to see that the simplest things is life far outweigh the bigger things
-Spent everyday with a smile on your face no matter what obstacles you might be facing

Addison, as I write this today, on your last birthday as an only child, I am forever grateful that you are my daughter. You have a smile and personality that lights up a room and I could never wish for anything more. Although we may not be able to predict what the future holds for you, I know you were given to us for a purpose and that you will go far in life no matter what direction that may be. However, I can predict the next important step for you. That is becoming a big sister for the first time. I have no doubt that you will be the greatest big sister ever. I look forward to you taking on this role and showing your little sister the best things in life as you two grow old together.

Today the tears flow. They are tears of happiness and sadness at the same time. Sadness that you are growing up and all I want is for you to forever be my baby, but also tears of joy that you are the wonderful little person you are and we are so lucky to be your parents.

Happy Birthday Sweet Girl and always, always keep that smile on your face.

Love, Mommy

Here are some pics from Addy's 3rd birthday party:

EEG

2010-05-05T21:30:00.003-04:00

Well, I'm sitting here at the hospital watching Addy sleep for her 24 hour EEG. Kind of weird just sitting here watching someone sleep. Actually 2 people, since Aaron is with me so we can take shifts.

It's a video monitored EEG which means that along with her brain activity, she is being recorded on video as well. So, I am also staring at her in the monitor screen and watching to make sure the EEG monitor stays consistent. I have a button to push each time I see an odd movement from her which in turn they then go back and look at on the video and EEG to determine if it could be seizure activity. So far, no button pushes.....and I don't foresee there being any. We don't normally see anything with Addy that would indicate seizure activity, however we have never watched her sleep before and since a lot of seizures can take place at night, I guess it's at least something to watch for and rule out.

We also had her EMG testing done 2 weeks ago. This was a muscle conduction test to check for nerve velocity. The first part of the test requires a probes being placed on different muscles, which they then send an impulse into the muscle to see how it is transmitted. Each time the impulse is sent kind of feels like an electric shock. Addy was given a small does of sedative through her nose before the procedure started, but I guess it's just used as a calming mechanism and didn't actually put her to sleep. Therefore, with each impulse sent, she complained. I can't blame her. The second part of the test was worse. They actually stuck very thin needles into the muscles. She complained even more for this. However, everyone involved commented on how well she did as most kids cry a lot and Addy only complained. Coincidentally, Dr. Acsadi's wife (who is a neurologist for adults) was helping to run the test because the technician was learning the new technology. Therefore, when the test was finished, she was able to tell me that everything looked normal. The only thing found was a slight decrease of muscle function near the foot/ankle area, which could be a result of underdeveloped muscles. At this time the results of the EMG will probably read "congenital myopathy" which continues to be a very broad term and really doesn't tell us anything.

We then went for a blood test the same day to rule out any dystrophy. The nurse promised to call me with the results, but still haven't heard anything. So, while we are sitting here at Children's I already have requested a doctor to get me the results. Was told I should get them in the morning. I am hoping that the lack of a phone call means that the test results were normal.

We are heading to Muscular Dystrophy clinic this Wednesday where we will see Dr. Acsadi again. I will be able to discuss the results of the EMG, blood work and EEG there. Also will be able to find out what our next step will be. Dr. Acsadi's wife felt that a muscle biopsy would probably be suggested. I am very torn about this if that is what is suggested. It's such an invasive procedure, so I'm not sure if I will go through with it. Many questions need to get answered before I make a decision. Here are some pics of Addy during the EEG.

Call Reversal

2010-04-19T21:31:00.002-04:00

First, I would like to start out by saying thank you to everyone who commented on Addy's last post about the Tiger's game. We had an overwhelming response from so many about just how touched they were by the story and how they have continued to tell the story to others. We felt just as touched to hear from each of you. Thanks for all the love and support you show for this little girl.

Now, on to the best part. We have a call reversal from the neurologist. Dr. Ascadi called to say that he had an opportunity to review all of Addy's x-rays and MRI's from birth on while sitting with a radiologist. It became very apparent now that he knows Addy and was able to talk about her to the radiologist that the last MRI clearly showed that she has Klippel Feil Syndrome. As soon as I heard the news that Addy had fused vertebrae, I thought for sure she would be given this diagnosis, but the neurologist felt differently at the appointment. This now explains the low hairline, short neck, cleft palate, fused vertebrae and the kidney issue.

So, he stated that congenital muscular dystrophy is not what he feels she has, (a big sigh of relief), however, Klippel Feil Syndrome does not explain the overall muscle weakness that she has especially the weakness in her legs along with some other minor abnormalities. So, now the question becomes, does she have something else going on as well? Does she still have what some would consider Arthrogryposis? Where do we go next?

Dr. Acsadi would like to rule out a dystrophy all together just to be sure. This can be done with a simple blood test. Then our next steps are to be this. An EMG muscle test will come first. If that shows us nothing, we can move on to an MRI of the muscles of the legs and then last, but hopefully not needed would be a muscle biopsy.

The EMG and blood test are scheduled for this Thursday. The EMG will require slight sedation as they actually send electric shocks into the muscles to record the responses. We will be heading to Children's hospital for both in the afternoon. Then the following week we are off to see a specialist for the kidney issue and the week after that we spend one night at the hospital for Addy's 24 hour EEG.

My list of questions continues to grow and now I am on a mission to find a specialist who deals with Klippel Feil Syndrome. I think I might have found one out of UofM. Dr. Acsadi would also like us to begin attending the Muscular Dystrophy clinic through Children's Hospital. Even though we don't think it's a dystrophy, whatever is going on is very muscular related and he feels
she would benefit from the clinics. So, our first clinic is coming up May 12th. My head is spinning with all the medical things we have done so far and how much we still have coming up. Can we fit all this in before the next munchkin arrives???? We shall see!

An Awesome Tigers Game!

2010-04-11T20:49:00.005-04:00

Today we ventured out to the Tiger's game. It was Kid's opening day and I thought it would be nice to take Addy before the baby arrives. It took me well over a month just to get tickets. Children under 3 are supposed to be free (well considering they sit on a parent's lap), however, in order for us to be able to go we needed to take Addy's orthopedic stroller which meant we needed a third handicapped seat for the stroller. I didn't think it was fair to have to pay for a third seat when children under 3 are supposed to be free so it took a little legwork. I must have explained my story to about 4 people in the ticket and box office when I finally reached someone in the season ticket office who was nice enough to help us out. In the end, we were able to sit in the handicapped section while only paying for two seats.

It was a beautiful day and Addy was very excited. Apparently on Friday, she told everyone at daycare that she was going to a Tiger's game. I never thought she would get so excited, so that was nice to see. She scored a Tiger paw as we entered the game and got a free ride on the carousel because of kids day. She was very well behaved the entire game. It was nice to be in the handicapped section because we had enough room to give her the walker and let her stand or sit to watch the game. The orthopedic stroller has been very nice as we are now able to take the stroller and the walker to outings.

After watching the Tiger's get off to a bad start, we were very excited to see them come back and win in the 9th inning. Awesome! We had planned to stay to run the bases when the game finished. I never could have imagined what happened next. We waited in line along with thousands of kids. We got down to the field and we gave Addy her walker. As we started out at first base and headed to second, Addy walked along with the crowd of kids. I walked beside her while Aaron took the stroller to meet us at home plate. Parents really weren't suppose to go on the field unless the children were very young and, well, in our case it was fine. As we approached second base, I looked around and started to notice that there were no longer kids running on the field. As I looked over my shoulder, I could see that the ushers had stopped the line of kids from going on the field. I didn't think much of it and the thought crossed my mind that maybe they only let so many on the field at a time. As we left second base and began approaching third, it really hit me. They had stopped the line of kids so that Addy could run the bases by herself without the crowd of kids surrounding her. Everyone in the ball park at this point was cheering her on. I was shocked to say the least! Thousands of people cheering for one special little girl. It was absolutely amazing. She rounded third base and headed home where she reached down to touch the plate with her hand and thousands of people clapping. At this point I could hardly take a picture because I had tears in my eyes. After reaching home, Dave Dombrowski, the Tiger's president approached us to ask her name, age and to get a picture. He gave her a high five for a job well done. Aaron looked over to see ushers who even had tears in their eyes. As we proceeded to leave the ball park, even on the streets of Detroit, people were approaching us and telling us how awesome that was. It was one of those situations in which you wish you could do it all over again and have a video camera in your hand. It all happened so fast and when it was over we were able to see how one little girl can touch so many lives. A day that Aaron and I will never forget!

On our way

Tiger paws

Carousel ride

Running the bases

2nd base

Meeting Paws at 2nd base

Still running

Rounding 3rd

Home!

Meeting the president

Tuckered out

Congenital Muscular Dystrophy

2010-04-07T15:36:00.005-04:00

Another trip to the doctor, neurology this time, and a new possible diagnosis. We originally scheduled a neurology appointment because of the seizure that Addy had back at the beginning of March. Since then, neurology has become a key part in helping us determine a possible new diagnosis for Addison. I was anxious to see the neurologist for the first time to talk about Addy's recent brain MRI as well as the spinal MRI and skeletal survey. A few weeks back when we saw Dr. Dabrowski, he too felt that neurology would be very helpful. He certainly was. We saw Dr. Acsadi from Children's hospital. What a wonderful man!

He definitely put my mind at ease with the brain MRI. He felt that Addy's seizure was fever/viral related and hopefully was just a fluky one time occurrence. He did give us a prescription for Diastat which is a valium that can be administered rectally should she happen to have another seizure. That would allow us to stop the seizure if it happened to progress for a period of time to ensure that no damage is occurring to her brain. He also felt that the MRI was normal for her age and after seeing her felt as though we shouldn't be worried about anything with her neurologically. Whew!

We did receive the results from Addy's spinal MRI. It showed that C2, C3 and C4 (the vertebrae in Addy's neck/spine) are fused together. This blew my mind since we had a cervical MRI done at 4 months along with several cervical x-rays along the way. All of which came back normal. It does however, explain why Addy has so much stiffness in her upper torso and neck area. The MRI also showed a possible issue with one kidney which might require further testing. No huge concerns about the kidney at this point.

Now, onto the next possible diagnosis. After examination, Dr. Acsadi said that he has seen a case several years back that presented much like Addison. The diagnosis ended up being congenital muscular dystrophy or rigid spine syndrome. The genes for the syndrome have recently been detected and he would like Addy to undergo genetic testing for those specific genes. If those tests come back normal, then we will proceed to a muscle biopsy. This involves taking out a small piece of muscle, usually from the thigh. When the muscle is studied under the microscope, it is possible to look for changes, which might indicate a muscle problem. In children with a muscular dystrophy the muscle fibres, instead of being evenly sized, show a great variation and some of these fibres are replaced by fat and fibrous tissue. Some more blood work will also occur to measure for the levels of muscle protein. During this time, Dr. Acsadi will be reviewing all of Addy's MRI's and x-rays from birth to now along with a radiologist to look closer at the muscles.

If this should become Addy's diagnosis, it is a genetic condition. It would mean that myself and my husband are carriers of the gene although we present no symptoms. We have a 25% chance or 1in 4 pregnancies to pass this on to our children. At this point we are praying that everything will turn out okay with the new baby. I am able to tell from comparison, that the new baby definitely moves around in utero much more than Addy ever did. However, at the time, it was my first pregnancy and I didn't have any idea how much a baby should be moving.

So our next step along with all the testing is to begin attending the muscular dystrophy clinic that Children's Hospital holds each month. This includes doctors, therapists, orthotists, vendors and representatives from the Muscular Dystrophy association who will be on hand at each clinic to watch for progression with each child as well as get us set up with many supports that we will need as Addison continues to grow.

Should this ultimately become Addy's diagnosis, we are fortunate that the type of MD is not too severe. It is difficult to tell at this point if she will ever gain enough muscle strength to become an independent walker and if she does whether or not we will see changes in her muscle strength as she grows. Only time will tell. Scoliosis will be a huge component to keep an eye on. She currently does not have scoliosis, but this condition can lead to it.

It certainly has been a whirlwind of a month, but I guess in the end it will lead to answers that I have been looking for since the day she was born. Here are a few cute pics of the last week

Happy Easter

2010-04-03T21:01:00.004-04:00

Addy's New Room

2010-03-28T21:42:00.003-04:00

Addy continues to do well medically. She seems to be completely back to herself. Tomorrow we venture back to Children's Hospital for the spinal MRI. It will be done under sedation and the procedure is expected to take about an hour and a half. After the MRI, she will receive a skeletal survey. Then next week, we follow up with the neurologist.

In preparation for the new baby, we did away with our guest room and turned it into Addy's new big girl room. She absolutely loves everything about it. It came together much better than I had imagined. She loves sleeping in her big girl bed and has been a nice space to start accumulating some of her toys in order to make room to get all the baby equipment out again.

Is the Month of March over yet?????

2010-03-21T19:20:00.007-04:00

Man....I am willing this month to be over with! It has been long, grueling and full of unexpected surprises filled with a tremendous amount of up and down emotions. Last week we had an appointment with genetics as well as Addy's MRI of the brain. I left the genetics appt. feeling very overwhelmed, nervous and full of emotion. Originally when I had made the appt. several of months ago, I thought that Dr. Bawle would see us and then say that we didn't have to return unless we felt it necessary. However, between then and now so much happened that I certainly didn't get that response. Dr. Bawle seemed very concerned about the seizure and change in speech. I of course asked the questions like, "what's the worst possible scenario we are looking at?" You don't even want to know the answer she gave me. So stupid of me for asking because now it's all I can think about. She had promised me that she would call after Addy's MRI which was the following day.

So Thursday, down to Children's Hospital we went, bright and early for the first appt. of the morning. Everyone was so nice. Once again they were unable to get an IV started (thankfully they only tried once, unlike Beaumont who tried about 8 times!) so they had to take her up to anesthesia where they put her under before starting the IV. Much easier! The MRI went well and Addy recovered quickly from the sedation.

The worst part was the anticipation of waiting for the results the next morning. I called the pediatrician as well to have them get the results, just in case genetics forgot to call me. I knew I couldn't go all weekend without knowing. So, after willing the phone to ring all day, I finally called genetics about 2:00. They immediately called me back and the news came across as somber. She said the MRI showed changes in the white matter of her brain on both sides. Okay, so what does that mean. Then she went on to say that at this age the brain is changing so much and myelination is rapidly occurring, so at this point it's difficult for us to tell anything until she has a follow up done in 6 months to compare it to. However, throughout the entire conversation she didn't sound extremely positive. Although she did mention that the report stated that the white matter was consistent for her age. Okay, so now what do I think?

Again, I willed the phone to ring as I waited for the pediatrician to call. By this time I had cried enough tears to fill a bathtub thinking the worst thoughts possible. The phone rang and I told her that I never wanted to talk to Addy's pediatrician so bad in my whole life. She seemed a little puzzled as to why I was so upset. I told her I had already spoken with the genetic doctor and I was scared. She read me the whole report over the phone and said that when she read it, she didn't draw any red flags. It clearly stated that the white matter was consistent with the patient's age and if clinical concerns remained, we could follow up in six months with another MRI. So, I felt much better after talking to her. I am still waiting to see the neurologist on April 7th and get his opinion. Hopefully I can leave that appt. feeling much better.

In happier news, Addy seems completely back to herself other than the speech. It has changed so much over the last several weeks that it is still very puzzling. This weekend we headed to Tyler and Ethan's pool party for their 2nd and 4th birthdays and Addy had a blast. Here are some pics to prove that she is feeling much better and seems to be back to her happy go lucky self. She also has a new big girl bedroom which she has been very excited about. I will post those pics soon.

Medical Mystery

2010-03-14T20:54:00.006-04:00

Well Addy seems to be on the up and up from our scary experience 2 weeks ago. We are awaiting an MRI of her brain this Thursday. She will have to be sedated for it because it requires lying still for 45 minutes. Hoping that it might bring about some answers, but at the same time praying for it to be normal. After another conversation with her pediatrician, she mentioned that it was possible that Addy had an undetected infection that could have swelled her brain, particularly in the speech processing area. The swelling could have been enough to bring on the seizure and the speech issues, while the infection could have been the cause for the fever, thirstiness, tiredness, etc. It definitely makes sense, but we may never know.

The odd part about the speech is that by last Friday, the stuttering had all but ceased. I might have heard it slightly here and there, but nothing real noticeable. Each day that went by since the last time we ended up in the hospital, we noticed it seemed to get better. That is puzzling. But, the infection and swelling of the brain scenario would make sense. Until today.....the stuttering is back! We just can't seem to figure this out.

And the medical mystery continues.............

This week I took Addison to see a new doctor. I had this appointment scheduled since last year. Dr. Dabrowski (Physical Medicine and Rehabilitation doc) was a doctor that I had wanted to see since Addy was born and we were seeking out some answers. However, he's a very difficult doctor to get in to and at the time I was impatient, wanted answers and didn't want to wait to get it to see him. So, we took a different route. Now, after almost three years, I decided it was time and I was going to wait as long as I needed to.

The thing about Dr. Dabrowski is that not only is he an awsome doctor, but he loves mystery cases and he will do whatever it takes to find the answers. Many of the students in my classroom have seen him over the years and he has helped to diagnose many of them, even some of the most difficult cases.

I left the appointment just kicking myself for not seeing him sooner. I have always had this nagging feeling ever sense Addy was diagnosed with Arthrogryposis, that maybe, just maybe it wasn't the right diagnosis and how will we ever know? Dr. Dabrowski is very intrigued with Addy and is going to work hard to seek out right answer.

At this point, he is not saying that she doesn't have Arthrogryposis as she does have many features that are Arthrogrypodic looking, but he feels like there could be more. At first glance he feels that whatever she has is a syndrome or condition driven by the central nervous system or spinal driven. He was a little baffled that numerous tests such as a spinal MRI or a full look at her body had never been done. He was thrilled that we will be seeing neurology in early April, because he feels like neurology might be the key player in figuring out what is going on. Some of the syndromes he is looking at are: osteogenesis imperfecta, sprengels syndrome, skeletal dysplagia, congenital anomaly, developmental delay, hypotonia. Several of these terms are very broad, but he listed everything that he felt could end up being a term to describe what is going on.

So, our next step is a full spinal MRI at the end of the month as well as a skeletal survey. The spinal MRI will take an hour and a half and so is was not possible to have it done on the same day as the brain MRI as they don't like to keep kids sedated for that long. The skeletal survey will be done this Thursday following the MRI of the brain. We will then follow up with neurology in April and we will see Dr. Dabrowski back in June.

I am excited about this, but also nervous at the same time. Excited that we might discover some more answers, but scared about what exactly those answers might be. And again I kick myself for waiting so long. I am hoping and praying that this baby growing inside of me will not carry on any of what these answers might possibly be. Since many of them very well could be genetic.

Speaking of genetic, we have a visit with genetics this week and Dr. Dabrowski was going to talk with our geneticist ahead of time about some of these syndromes for another opinion when we go. Lots going on lately and my head is spinning just trying to remember and keep it all straight.

Also in the meantime, Dr. Dabrowski would like Addy to be fitted for a DMO (dynamic movement orthosis). This will be a very tight fitting suit that can be snugged up in the areas in which Addy needs the most support. Mainly for her it will be in her shoulder and trunk area. This suit will be worn under her clothes. It is very new and currently is being made in England and Dr. Dabrowski is working very closely with those who invented it. The only downfall is that it makes you sweat a lot. Addy has always been a sweater since the day she was born, so we will see how this goes with summer on the way.

Aside from everything else that has been going on, Addy got her new orthopedic stroller this week. She has just about outgrown the toddler stroller she has and we knew that she was going to need something long term for distances. I also needed a stroller that I could transport the walker on so when we go places, Addy will have both means of mobility. The stroller has tie downs as well should she ever need it on the bus when she goes off to school next year. She was very excited about it and so far on our one excursion out to the mall it seemed to work well. Here are some pics. I will continue to keep everyone updated as we get answers.

Update

2010-03-08T21:26:00.003-05:00

After Addy's initial seizure and hospital stay we have had some more developments.

We were discharged from the hospital on Wednesday with orders to receive a 24 hour EEG in 3 weeks. There was talk of an MRI at this point, but the suggestion was to wait until she turned 3 years old. The reason behind this was because usually by 3 years of age the myelin has completely formed around the nerves and would allow us to see if everything there has developed correctly. She had an MRI done at 4 months of age which was normal and will allow us to have a baseline to go on.

The next morning (Thursday), Addy awoke with another fever. This time it was only 100 degrees, but took me off guard since she didn't have a fever the entire time we were in the hospital. I immediately called the pediatrician and took her in for another look. Again, nothing was found. Her fever stayed 100 degrees all day which was good. The other oddity was that she had now acquired a stutter to her speech. Before all of this happened, she did mumble at times while she was processing what she wanted to say, however this was a true stutter. I tried to chalk it up to being developmental.

Friday, Addy awoke with no fever, still a stutter, but had a pretty good day. On Saturday, we had a family birthday party to attend. I was anxious to go and see what Addy's demeanor would be like back out in the environment away from the cooped up house. Addy had a good time, but Aaron and I both could tell she wasn't 100% herself, however it was difficult to put our finger on just what was wrong. We also noticed the stutter seemed to be getting worse. By the time we arrived home from the party, Addy's stutter was so bad she could hardly talk to us. Aaron and I both had pits in our stomachs that something just wasn't right. I immediately called the on-call pediatrician. Thankfully it was my own doc. Her advice was to take her back to Children's hospital.

So Saturday night we ended up back in the ER at Children's. The ER doc didn't seem too concerned as the situation did not seem life threatening to him. He didn't feel it was stroke like since it was a stutter rather than a slurring of words. He didn't want to put her through the unnecessary radiation of another CAT scan because he said the CAT scan from Tuesday would have shown us if their were a tumor or brain bleed. He consulted the on call neurologist who was concerned, but felt the best bet was to undergo a MRI. Problem was, if we were admitted to the hospital, the first time slot for an MRI wasn't until this upcoming Friday. So, they sent us home with a script for an outpatient MRI.

Sunday Addy woke up much more like herself. Her personality was back, however the stutter remained, just not as bad as we saw on Saturday. This made us feel much better. She had a good day and went back to daycare on Monday.

Today we went to an ENT appt. I really wanted her to be checked out to make sure that her throat was healed up from the surgery she had at the end of January. I thought that maybe the lack of appetite, changes in speech, thirstiness could all possibly be related to that. He scoped her and said she was healed fine. That was good news, but again still leaves us with many questions and no answers.

She will be having an MRI on March 18th which she will have to be sedated for. We then have an appt. to see neurology in April. In between then and now we will also be having the 24 hour EEG which has not yet been scheduled. We are hoping and praying for good results from all tests. I will also be consulting a speech therapist from early intervention about the stutter. Please keep Addy in your thoughts and prayers.

Seizures- They can rock your world

2010-03-04T16:02:00.009-05:00

The world that I once knew completely changed this week. I picked Addison up from daycare on Monday and was told that she was very tired all day. Got her home and noticed a 104 degree fever. Took her to the last doc appt of the day where she still had 103.8 fever even with medication. The doctor was unable to find any source of infection after running a strep test and checking her urine. She sent me away and told me to keep an eye on her.

Tuesday I stayed home with her and she woke up with a 100.8 fever. I gave her some Motrin and continued to monitor her the rest of the morning. Every temp reading from that point out was 96, 97 and 98. Normal right? As we sat down to eat lunch, Addy turned extremely pale, keeled over and began not breathing. I scooped her up, thinking that at first she had just fainted, until I realized that she wasn't breathing. I panicked!!! Laid her on the floor and noticed the stiffening of her entire body, her inability to breath and turning blue. The world I once knew in this instant completely changed. As I tried to calm myself to start CPR and grab the phone, the thoughts that ran through my head were terrifying. Because this had never happened before I didn't initially realize that it had been a seizure until she came out of it. The thoughts in my head were "Addison, I can't lose you like this!" Absolutely terrifying. As I dialed 911, she began to get start catching her breath. By the time I was done giving my address and description, she was starting to become coherent and responded to me. At that point, I realized what had just happened- a seizure. The whole episode lasted about a minute and a half to 2 mintues with about 30 seconds of not breathing.

My job has prepared me for moments like this- or so I thought. I have seen many seizures occur in my own students at school. I have witnessed them, dealt with them calmly and have been able to follow medical protocol that I have for those students with seizures. Never before has a seizure shaken me to this extent. It becomes so completely different when it's your own child. Everything you once knew goes out the window and you feel totally helpless.

As the firemen and paramedics arrived, Addy laid in my arms, but was very responsive. She did not fall asleep initially as many do after a seizure. We were transported to Troy Beaumont, because my initial request to be transferred to Children's Hospital couldn't happen until we had been seen by a local hospital. On arrival to Beaumont, Addy received a CAT scan, a spinal tap, blood work and urine work-up. Meningitis was ruled out and all test results came back normal. During this time, she also had 2 other very small episodes that are difficult to tell whether or not they were seizures. One was witnessed by a nurse in which Addy entire body tensed up and she turned blue once again, but the whole episode was extremely short and she came out of it just as fast as she went into it. The next episode was even smaller with no change in color. At this point, opinions from health professionals did not feel as though the seizure was fever related. We were then transferred to Children's for further testing and observation.

On arrival at Children's we were put in a room on the observation floor, admitted overnight and awaited an EEG in the morning with a neurology consult. Every thing else from this point forward remained normal- temperature and blood pressure. The EEG came back normal, however neurology's opinion was that of everyone else's in which the seizure did not sound fever related. I order to have a febrile seizure you have to have a quick spike or decline of temperature in the body over a short period of time. This didn't seem to be the case with Addy. At that point we were sent on our way and are now awaiting a 24 hour EEG in 3 weeks.

Everything within me feels like this is fever related. It's just that gut instinct you have as a mother. The fact that she was sick with something that we think is viral and this occurred during that time just makes me feel as if there was a correlation rather than it being an underlying seizure disorder. Now that worst part about the whole thing is that we are forced to wait and see if it happens again.

I have been off work all week and plan to stay home with her the remainder of the week. After two days at the hospital with no fever, she woke up with a 100.3 this morning. Erghhhh! Back to the pediatrician we went and again nothing abnormal was found. She is definitely fighting a viral infection of some sort, or so we think.

So what now??? During that 2 minute episode on Tuesday, life changed. I watch and question her every move. She doesn't leave my side other than maybe the next room in the house. We slept in the same bed last night and for nap today. How do you leave her alone in a room to sleep when all you have is a monitor to rely on? It might be different had she not lost consciousness during the whole episode, and I am so fearful of that happening again.

The feelings then turn to those of guilt. Guilt because I know that she has to return to daycare on Monday and I will feel absolutely horrible if this happens and I am not there. I so badly wish I could afford to stay home with her, but that isn't a choice. Going to school next year will be easier for me because she will be in a program with personnel who are trained to deal with these situations should they arise. Daycare, however, does not typically deal with kids who have seizures. They are all CPR trained, which I am fortunate for, but it's just different when you know they have dealt with and witnessed seizures before. Tomorrow I will be going in to get a health care plan and protocol in place should this event occur again.

All I ever wanted and all I ever do want is to be a mother to Addison. I now again feel like I have to be so much more. A teacher, a healthcare provider, a therapist. I remember not enjoying her as an infant in the way a mother should. I spent my time worrying, watching, diagnosing and being a therapist. I now feel back at this point. I have to watch and worry and wait every second of every day rather than just enjoying who she is.

This blog has been a great way for me to keep a history of things that happen with her and it helps when I need to go back and refer to times when things happened. I also enjoy the ability that it allows for friends and family to keep updated on her progress. Here are a few pics from our hospital experience. I want to thank everyone for their thoughts and prayers over the last several days.

Fun at a Hotel

2010-02-24T20:31:00.002-05:00

Last weekend we met the Coffindaffers at a hotel for a little bit of fun. The kids were excited to go swimming and play together. The hotel had a very nice set up with the pool area being located right outside our hotel rooms along with a play area. Addy was very excited about going swimming. After thinking back, we really hadn't taken her to a hotel before so this was a new experience for her. She slept very well in her own double bed. Lots of fun was had by all. The pics are a little blurry as I totally forgot my camera and had to use my phone:(

Birthday Parties

2010-02-14T18:55:00.004-05:00

This weekend we attended two birthday parties. The first one was for Logan and Landon, twin boys who live across the street from us. They turned 1! After their party we headed over to Isabelle's party who lives next door to us. She turned 2!

Now that Addy understands birthday parties and what they are all about, she was really looking forward to them and had a great time. I would be lying if I didn't say that attending events like this makes me a little sad to see what a disadvantage she has physically with the other kids. It's difficult because she is at the age where she wants to play with them and do what they are doing. When we attend many functions, we find that typically there isn't enough room for her to use her walker which is her only form of independence. She is then forced to sit with us rather than run and play with other kids her age. I can only hope that her time will eventually come. Here are a few cute pics from the day.