December 2010

October 2010

This year Missy was Cinderella for Halloween. We sure did get a lot of use out of that costume. Not only does she wear it for everyday dress up but she went to pumpkin carving, her Halloween party, a party at daycare, a party at preschool and trick or treating in it. We definitely got our monies worth out of that one. For Halloween we always go to Grandma and Grandpa Marsh's house to go to their church's trunk or treat and to show Missy off to all of their friends. On our way there we saw a man walking his goat with a leash on the side of the road. Only in Coalville I tell ya. So wish I would have taken a picture. It ended up raining really bad that night so they moved the trunk or treat into the church. I have never seen so many kids...the place was pack and we ran out of candy within 30 minutes. Crazy! Grandma took Missy around from table to table while we gave out candy with grandpa. Missy received so much candy it could last her a year. All those costumes and being so crowded kinda scared her a bit. She was really quiet and did a lot of watching. As always we had a wonderful time with the grandparents.

For aunt Marilynn's birthday we went to Frightmares at Lagoon. It was Missy's first time and we had a blast. 

 

I took Missy to a Mortarboard Pumpkin Painting Halloween party up at the UofU for Hopekids. She had a blast. One of the college students was dressed up as Batman....she took a liking to him and followed him everywhere. On the way home I asked her...so you really liked that Batman Hun? Missy's exact words...Ya but he's no Spiderman.

Missy had her face painted and decorated 2 pumpkins.

Notice she had to be by batman.

We had a Halloween party at our house for Missy and some friends from daycare. They played games, painted pumpkins and bobbed for apples. I love that Missy has so many wonderful friends to play with. Here is a video one of the parents took of Missy bobbing for apples.

September 2010

At our last event with the Utah Spina Bifida group one of the parents told me about another group called Hopekids. She told me that she has her daughter in this wonderful group and I should put Missy in it. HopeKids provides ongoing events & activities and a powerful, unique support community for children with cancer and other life-threatening medical conditions.  They surround these remarkable children and their families with the message that hope can be a powerful medicine.  I submitted an application and Missy was accepted. Our first event was the monthly movie, Nanny McPhee. They gave Hopekids t-shirts to our whole family, free popcorn and drinks. The movie theatre was full. This month we also went to the Dew Tour, My Gym and a game night. We had a wonderful time and met the most amazing people. There are so many people going through such difficult and trying times. You never realize it until they all come together. Hopekids is a wonderful reminder that you are not alone. We can't wait for the next event.

So HOT! Cooling off by water and daddy picking flowers for his Missy.

Monster at Dew Tour

Dew Tour - Hope Kids Event

Missy was invited to another birthday party. This one was actually pretty special. It was for her little boyfriend Reese. Yes...boyfriend. They both say they are going to marry each other one day. Missy was actually the only friend invited, the rest was family. When we showed up, Reese's older brother said "oh Reese she is just beautiful!" Watch out Reese. Needles to say she had a fantastic time.

Missy and Reese...as you can tell she just adores him.

Ocktoberfest at Snowbird isn't it September? It was the most beautiful, nice and relaxing day in the mountains. I loved the scenery, Jesse enjoyed the beer and Missy loved the dancers. She was out on the dance floor before we knew it. What a wonderful way to spend an afternoon.

Missy took a great picture of mommy and daddy.

Missy and Mommy having some fun.

These men just loved Missy.

Meet Missy

Meet Missy 

Missy was featured on the Utah Spina Bifida website. Please click the above link Meet Missy to see it.


Q: Tell us about Missy and your family.

A: Jesse and I were married in 1999. We tried to have a baby for 6 long years. Finally our prayers were answered in August of 2005. We were going to have a baby. That December, through a triple screen blood test and ultrasound we found out that our baby had Spina Bifida. At that point all our thoughts about baby stuff stopped and the focus became primarily on Spina Bifida. Along with our doctors, we decided to do a scheduled C-section two weeks before Missy was due. Within 24 hours Missy birth she had surgery to close her back. Six weeks later she had another surgery to insert a shunt into her head due to Hydrocephalus. Since then, Missy has undergone three separate surgeries, first to remove her adenoids and place tubes in her ears, the other to try and fix the valves (ureters) that are letting fluid back to the kidneys. The second surgery mentioned to repair the valve (ureters replantation) was only partially successful. This last year Missy went under a battery of tests and medications we found little choice but to proceed with a bladder augmentation this past June. So far, so good.
 Q: What is the most difficult challenge you have had to face so far in dealing with spina bifida?
A: The unknown is certainly the most challenging aspect of Missy’s condition. There are as many variables in the effects of Spina Bifita as there are diagnoses. We are learning now to roll with the punches and take them as they come. We understand that a strait answers are rare in her case. Honestly the MOST difficult challenge to us is to hand our baby over to the anesthesiologist before surgery.
Q: What has your experience been with daycare? (I think a lot of families would be interested to hear your positive experience)
A: We put Missy in the West Jordan Child Center at 3 months old. We believe that Missy has benefited from this good, group day care, where she can have fun and learn how to interact with others. It is an excellent daycare with fantastic teachers. They have always been willing to help with anything we have needed. The first year they would call me anytime they had a question about something going on with Missy, even little things, which made me feel more comfortable. As she got older and they were more familiar with Missy and her needs the calls lessened. I only get phone calls now if she is actually sick. They even got involved in her Physical Therapy. Even though we would tell the teachers what we were working on at home, we would have our early intervention therapist come in as well to show them how they could work with her in their environment. When we started cathing her, the daycare even offered to do that as well but I just didn’t feel comfortable with it. Actually, I am the only one who does it. It was a nice gesture though.
Currently at daycare, Missy is involved in creative work, imaginative play, and physical activity. She has space to move indoors and outdoors in her wheelchair. She is drawing, coloring, pasting, cutting, counting, knows her ABC’s, can spell and write her name, she is learning about the seasons, months and days of the year and she is only 4 years old.
I think the best thing about daycare is the socialization Missy has gained. Because she has been there since she was so little, she has grown up with all the kids. They don’t see that she is disabled. They just see her as their friend Missy. She has been invited to numerous birthday parties, play dates and even went on her first field trip to the Hogle Zoo with her classmates. When Missy had her last surgery she had one friend visit her in the hospital and another when she got home. She even has a little boyfriend at daycare (they think they are going to marry some day). It really makes it all worth it to know she is loved and has many, many friends.
Q: Tell us about Missy’s tennis lessons.  How do you feel about getting her involved in a sport
A: Since both my husband and I learned so much from sports as children, we thought it was very important to give Missy the same opportunity. Self-esteem isn’t something you can give your child. We gain positive self-esteem through accomplishments. We believe that Missy can achieve these accomplishments through sports by reaching goals, big and small, and feeling good about herself. Sports provide a positive learning experience that will enhance her ability to build skills, endurance, strength, self-confidence, good sportsmanship and teamwork skills. Sports will also teach her to work hard and have a fun too. Perhaps some of the greatest life lessons are learned in sports. Winning does not come easy; you’ve got to work for it. “Winners never quit and quitters never win.” Life isn’t fair. Sometimes you give it your all and you still lose. When you lose, pick yourself up and try, try and try again.
We decided to put Missy into Wheelchair Tennis this past spring. Neither of us had ever played tennis but we chose it because we could all play it together. At first she was the only little girl out on the court. Most of the players were adults or teenagers. Missy could care less though. She loves being on the tennis court playing with others in wheelchairs just like her. Later in the season, another two kids started to play tennis, which made Missy look forward even more to tennis. Now the three of them are playing basketball together too. It has only been a couple weeks but I think Missy likes basketball even more than tennis. Maybe it’s because there is a lot more kids on the court or maybe it’s because she is actually better at it. Who knows? All we know is that she looks forward to playing every week.

Back to preschool

8/31/10

Missy's First day of Preschool in her new dress Uncle Joe got her and backpack. Everyone told her how pretty she was in her dress and now she wants to wear a dress everyday. She is such a girly girl

Missy in her classroom

Missy in her classroom with her Teachers.

Missy started her second year of preschool today. This time I was able to keep myself together. The school district in our area have made some major cut backs this year. They were going to cut some programs, including the preschool program for special needs kids but decided to cut the days instead. Missy will only be going to school for two days a week rather then the 3 days they have done in the past. I am truly grateful. Something is better then nothing and very much needed. Missy has the same teacher, Ms. Nancy (love her) but the teacher's aides have changed. All very nice ladies and Missy took a liking to them right away. Missy loves school and can hardly wait every Tuesday and Thursday to ride the bus. I think riding the bus might be one of her favorite things. She was excited to find out that Treyson (a boy from her daycare class) is in her preschool class. He will also be riding the bus with her to and from school. I really can not believe how big my baby is getting. They grow up so fast.

Horsin' around

Buffalo Ranch Facility

Here we go.......

Look Mom no hands

Riding backwards

There was little horsin' around today at Missy's new therapy. She was all smiles while riding BJ, her new Palomino friend. Her arms stretching and moving to each side, I could feel her core just a working away. They had her forwards, backwards, both sides, on her side, and even on her knees. They really seem to know what they are doing. The facility was beautiful. Missy had to call her Grandma Soares and Grandma Darlene as soon as she got in the car and tell them all about her experience. We hope to improve her balance, core strength, hip movement, and have fun doing it. I think we have found just the thing. We thank Cindy the therapist and her volunteers, they are wonderful.

Just chillin.........NOT!   Working out the bend in my back.

Daddy...Look at me!  Look at me!   I am  big girl now!

Check-Up After Surgery

Good news! Missy went through multiple tests today at Primary Children's. Her doctor said she is still healing but healing well.  Everything seems to be going according to plan and Missy looked really good. Our next appointment isn't for another 6 months. So far, Success! Thanks so much for all you thoughts and prayers.

Busy Busy August 2010

We have been so busy this month, it is crazy. With tennis, birthday parties, reunions, play dates, etc. how is a mother to keep up.

Opening presents with sweet Adeline

Missy was invited to her first birthday party. She had such a great time and Adeline (birthday girl) even let her help open some presents. So sweet to see how well they played with each other.
We had our Cowley Family Reunion up in Idaho on the Snake River and it was fantastic. Would love to live there. We went tubing down a slide, paddle a canoe, went on a boat ride, sang karaoke and just relaxed for 3 days. It was such a nice getaway. Can't wait to go back.

When we came home Missy had a Spina Bifida swim party where she got to see all her little friends from tennis, made some new friends, ate dinner, played a little tennis and went swimming. Even her new therapist, Michael came to see her there. He is so amazing, we haven't even started our sessions yet and he showed up at the party with something he wanted Missy to try out to see if it would work for her. He still has to make some adjustments but when he is done, I will post some pictures for sure, I promise.

Missy's first flowers from a boy.

We also had a play date party at our house with some friends from daycare. The girls had a blast and Missy's little boyfriend, Reese brought her flowers. Can you believe she is already getting flowers from a boy? She calls them her marrying flowers because her and Reese are going to get married some day. They are so darn cute together and he is the sweetest boy. She sure does know how to pick them.

Missy had a second birthday party she went to for her friend Kate. It was supposed to be at a park but got rained out so she ended up having it at her house.  The house had some stairs where I had to transfer Missy a lot. Ya know kids, in and out and running all around. By the time I would get Missy to where the little girls were, they would be off to another place in the house where I would have to take Missy. Poor Missy finally got frustrated at the end of the party. I ask to take her to where the girls were and she said no, and just sat there all by herself. I hadn't really experienced that situation with her and I have to admit, it broke my heart. The party and parents were really nice and they tried really hard to include Missy in everything. Kate's parents help me out numerous times. Such great people and Missy really did have fun with the girls. Missy didn't want to leave and on the way home all she could say is that she missed Kate already.

 The rest of this month is just as busy. Missy will start preschool, horse riding and have her check up to her surgery. All I have to say, is the month over yet? Mommy needs some Calgon.

Help Missy Walk

With Missy struggling to walk, and her dreams of being like the other kids, we have looked for other programs that may assist her to reach her goals. Missy has been accepted into a couple of programs that promote aggressive therapies that have had great results. One of these programs in which Missy has been accepted, Therapeutic Assets Horseback Riding Program, has helped with many aspects of the process of walking for those with similar disabilities. These programs have become very costly. We are looking for sponsorships to help her with these therapy programs.
Thank you for your support.

Click here to be a sponser

Wheel Chair Tennis

Getting ready to play with her Dora racket!

08/02/10

Missy is now in wheel chair tennis. We thought we would get her started at 4 since it may take her longer to learn then most kids. She absolutely loves it. One of her coach's has Spina Bifida, is the wheelchair champion of 2009 and a rocket scientist! Wow! What an amazing role model for Missy. Not only does he teach tennis but he also teaches basketball. Hopefully we will get Missy into that in the future. For a while Missy was the youngest in her tennis group, mostly adults and a couple teenagers. Just last week two new kids came to play, one boy who is 6 and a girl who is 8. Although Missy is still the youngest in the group, it is so nice having some kids closer to her age. Both of these kids have Spina Bifida so they all have a lot in common. The 2 new kids use arm crutches to help them walk, which made Missy want to try them. Saylor was nice enough to let Missy try them herself but Missy wasn't very successful. Maybe these kids might inspire Missy to try walking more. It sure looks like it. I guess we will soon see. Us parents had a lot to share with each others experiences and could have talked for hours. Missy looks forward to Mondays so she can play tennis with her new friends and now, so do I.

Talking with Trish, one of the 3 coaches.

Missy and Ethan getting ready to play Tennis!

Missy's 1st Fieldtrip

7/30/10

Missy had her first field trip to the Hogle Zoo yesterday with her class at daycare. It was so much fun. I and many other parents volunteered to help out with the kids and to drive our cars. The school also drove 2 buses. So as you can tell it was a lot of kids.  I had 4 girls in my group who were really good all day. I think I was one of the lucky ones. We saw a few animals, ate lunch, went on the carousel, saw more animals, saw an outstanding bird show and then it started to rain. It was so hot that we all welcomed it. We walked around in it looking at the rest of the animals. The only bad thing was that the train didn't run in the rain so we had to wait for it to dry up by playing on the play ground before they would run the train again. By the time the rain let up, it was time to go. So all the kiddos got on the buses to leave but as they were leaving us parents who brought our kids heard the train start up again. Yeah! We can finally ride the train. We had such a blast with all the kids, parents and teaches. I....can't wait for Missy's next field trip. Missy fell asleep on the way home and I hit the bed early. We were wiped out.

My little group of girls. We called ourselves the Tigers at first but somehow by the end of the day we were lions.

Missy loved the monkey's.

Missy riding the carousal. She usually has me hold her but today she had to do it all by herself. My baby is getting so big.

Some of the girls waiting for the bird show to begin.

Train ride with Missy's favorite boys.

Pool Party

7/18/10

We had a family dinner/pool party at our house. Jesse cooked up some outstanding pulled pork sandwiches and everyone else brought other fantastic food. The kiddos played in the pool while the adults hung out in the shade. Later that evening we made some yummy smore's. Such a great relaxing day. We are truly grateful to have such a wonderful family.

Missy having fun in the sun!

Some of Missy's cousins.

Missy in her fish floaty holding on to the edge

Jesse couldn't help himself...he had to spray the kids with the water hose.

Missy is working at Lowe's

7/13/10

One of Missy's favorite things to do is to go to daddy's work. She has so much fun there with all the employee and customer's. She actually thinks she works there. When I tell her we are going to daddy's work, she goes looking for her work cloths to put them on. When we get there she says Hi to daddy and goes straight to the paint department. She helps make paint and when she done with that she goes to customer service to help bag items. She even tells every customer when they leave "Have a Great Day" and they seem to love it, almost everyone chuckles a little. Makes my day....Not only does it warm my heart and make me smile but it makes her feel like she is a part of something and she can help people too.

Missy working with her daddy at Lowe's.

So excited to work.

Working in her favorite department....Paint.

Hives....UTI....? ????

7/9/10

For some reason Missy broke out with the hives. I totally freaked out. When we finally got to the doctor's she said that she was either coming down with something or that she was having an allergic reaction. Missy had a low grade fever and since she has a history of UTI's they decided to do a urine culture. Not only did she have hives all over her body, Yep you guess it...........she tested positive for another UTI. Sigh.....   I was hoping these were going to be less often since she had the surgery. Makes me wonder if the surgery was successful? I sure hope and pray that it was, I would hate for her to have another surgery. Missy has her check up on August 25th to see if the fluid is still going up into the kidney's. Please please keep praying that this past surgery was successful.     Oh by the way, we still haven't figured out what gave her the hives.

Missy dressing Missy

7/7/10


We are so excited to share with everyone that Missy is now starting to dress herself. Here are a couple pictures.

Her first outfit, PJ's all by herself.

Outfit #2 her favorite Minnie Mouse.

I had to help with braces, shoes and hair but she put the dress on all by herself for school.

Yeah! Missy is back to daycare!

7/6/10

Missy is finally back at day care. She has missed her friends so much and couldn't get to school fast enough. While I was getting her ready she kept telling me to hurry because her friends missed her. As you can tell from the photo....they did miss her. This was the welcome she got when she got there. We hadn't even made it into the building yet. She so loves daycare. It has been the best thing for her. She has made so many friends and missed them too while she was gone for the whole month of June.

Woo Hoo! Friends Friends and more Friends

Look at the mess these 2 little ones made. Yikes!

6/27-7/3/10

This week Missy met a new friend Dara who lives on our street. They have been playing everyday going back and forth from each others houses. So So Nice, I never could have imagined how great it would be for Missy to have a fried who lives so close to us. Missy sure is going to miss playing with her everyday when she starts going back to daycare next week. Missy also had a few play dates. One with Donovan and Morgan, another with Katilyn and went swimming with Talesha and Ashlyn. I just love that she has so many wonderful friends that love her and want to play with her. Thanks so so much everyone for all your love and support. It really does mean a lot to us.

Finally getting out and about...

6/24/10

We are finally getting out and about and what a day it has been. Today Missy went to the Zoo with her cousins Maddie and Cecily. She had so much fun looking at all the animals and playing with the girls. 

Missy, Cecily and Maddie riding the train at the zoo.

Missy and Maddie loved playing with the water squirting elephant.

We also went to a "Movie under the Star's" with Missy's Utah Spina Bifida group. We had dinner and talked with other parents. Come to find out this bladder augmentation is very common with Spina Bifida kids. One little girl had just gotten out of the hospital the day before from the same surgery and another baby girl had already had the surgery.  It was such a great way to share each other's experiences, what to do and what not to do, what is normal and what isn't normal, who to go to for therapy, etc. Jesse and I really enjoyed ourselves. They had games, projects, activities and snacks while we watched Alice In Wonderland. Missy had so much fun she didn't want to leave. I can't explain how it feels when your child finally fits in with a group. She was able to play and have fun with other kids in wheelchairs, walkers, braces, etc. The next get together is in August and we just can't wait to see everyone again.

Missy's new friend she made at  the Movie under the stars.

Nothing stopping these girls from joining in on the fun.....rolling through the trees....no problem.

Watching Alice in Wonderland.