January 2011

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!