Tuesday, March 29, 2011

Hanging out with the Girls

We are involved in a really good program through the University of Mary called, "Families as Trainers." Through this program, students who are pursuing majors in careers like social work and physical therapy can engage with the types of families they might be working with in their futures.
Each semester, we get assigned such students. We have been involved in this program for two semesters and both times I have been impressed with the students we have met. I believe they learn a lot by physically being around a child with special needs as opposed to just learning about these kids in the classroom.

This semester, we have had a group of three girls meet our family. Faith loves meeting new people and she especially likes hanging out with "the girls" as she calls them.

Faith doing Easter crafts with "the girls!"
Faith working closely with one of the nursing students

Yesterday we had "the girls" come to our apartment where we did some Easter crafts in our lobby downstairs. Afterwards, we ventured into the cold and the wind to Wendy's where Faith ordered, but only took two bites of, a frosty.

I always try to think of things to do where they can really see Faith in action, how she tries to use her hands, how she travels from one place to the next, how she acts in different environments. I really want the students we are working with to get a grasp of the challenges and also the joys of having a special needs child. I believe this will help them in their futures when they work with such families.

Last semester we had an occupational therapy major and a social work major and we all went out to the Pumpkin Patch. One of the girls helped Faith ride a pony. They were able to lift her up and transfer her from her car seat to her chair. Like one of them said, you can learn about high muscle tone in class but won't actually know what it is until you feel it for yourself. I love that these students are getting such great hands-on experience and I believe the students enjoy their experience with "Families as Trainers" just as much as we do.

If you are a family with a special needs child and would like more information about the "Families as Trainers" program or if you would like to get involved, please contact:  Mary Vearrier her e-mail is mvearrier@umary.edu and her phone number is 425-1495.

Friday, March 25, 2011

Guest Post

7 Kid-Friendly Alternatives to Television

By Jessica P., who has written about online nursing classes and how to obtain a degree in social work.
Our kids are spending far too much time in front of glowing tubes, especially the television. The American Academy of Child and Adolescent Psychiatry states that the average American child spends about three to four hours per day watching TV! All this time in front of the electronic babysitter equates to increased rates of childhood obesity and an increased likelihood to receive misinformation from their favorite programs.
Luckily, there are a million fun things you can do with your kids to replace a few hours of their TV habit. Here are seven to get you started.
1. Write a Book
Reading books with your children is always a good idea - but have you thought about making one together? You and your kids can let your imaginations run wild, creating the story and writing it down by hand. After you've got it on paper, add illustrations. You can draw pictures or cartoons, cut pages out of magazines, or add old photographs. Not only will it make a great memento from their childhood, but it will also foster their creativity. Who knows, you may discover you have an Emily Dickenson or Van Gogh living under your roof!
2. Break out the Board Games
My family has always enjoyed playing board games together. Even though we are all adults, every time we get together, it's a guarantee that a game will be played. Not only are board games fun for everyone, but can help solidify and expand upon all types of useful skills for your kids, like math, reading, writing, and problem solving.
3. Take a Field Trip
One of the most-loved school activities for kids is going on fieldtrips. Local museums, the zoo, the library, or a local park all make great, short day trips. When you get home, ask your child to write a story about their visit or draw a picture illustrating their favorite parts.
4. Jam Session
You don't have to be a virtuoso to enjoy this activity - you don't even have to be able to play in tune. Grab a couple of instruments from around the house, like a keyboard, a bongo, or a guitar, and make up a few songs with your kids. If your house is lacking instruments, make some! You'd be surprised at what a few rubber bands tied across an empty can or an upside-down bucket can be used as.
5. Fashion Design
Go through your closets and pull out a few old t-shirts, socks, or hats. Next, get some beads, hot glue, glitter, paint, stencils, or whatever else you want to decorate these clothes. You can make new pajamas, funky holiday socks, or an island-themed hat for the beach.
6. Fun with Photos
If you're like most families, you probably have a few boxes of photos lying around the house. On a long Sunday afternoon, pull out these old photographs and organize them into albums. If your child has specific fond memories of certain events, ask them to write it down and place the note towards the bottom of the photo. For another fun option, you can ask your child to help you decorate divider pages for groups of photos, like "Family Day at the Beach" or "Grandma's 75th Birthday."
7. Face Painting
No matter how old your child is, they are guaranteed to have a blast with this activity. Invite some neighbors over, and have kids paint each other's faces as an animal, with funny symbols on the sides, or with outrageous makeup. Be careful that they don't fight over who gets to paint your face!

Thursday, March 24, 2011

Faith's TV Interview

Today was the big day - Faith's first visit to a television station, meeting Marci Narum and doing a TV interview - all to represent the Great American Bike Race (GABR).

When we got to KXMB, we were greeted by a few staff members and chatted for a bit. This is when I found out they were expecting me to be on TV with Faith. I really, really didn't want to be on TV. So we asked Faith what she wanted and she said, "Just me! Just me!" Apparently she wanted all the limelight to herself. Then, someone offered to get us some water but when she brought Faith's water in a Styrofoam cup with a straw, she refused to drink it because it was not HER cup. I think she has this star thing down!

A little while later, Beth Thune (co-manager of GABR) came in and while we waited for Marci we were talking with Donell Preskey, another reporter, about Faith's therapy. I mentioned that we purposely moved here from Watford City so she could get her therapy services without having to drive so far. Donnell asked if I knew a certain couple who lived in the Watford City area and I told her he is my dad's cousin. After finding out my maiden name, she said, "I'm a Lawlar too!" Turns out we are second cousins or something like that - what a small state!

Anyway, after being introduced to Marci, we ventured into the tiny studio area. (It looks so big on TV). They put a ramp leading up to the set and as I pushed Faith up the ramp, she sort of panicked. I don't think she was expecting such bright lights. So during the actual interview, she was a little tense and nervous but she did answer Marci's question about her team being called Faith's Fantastic 12. The interview was short and sweet and after it was all over, Faith yelled, "I did it!"

Faith did great - she did her best and that's all we can ask of her. Once again, Rob and I are so very proud of her. The interview will be airing Wednesday, March 30 on KXMB's Noon Show. Be sure to tune in and be sure to support the Great American Bike Race!

Faith, Beth Thune and Marci Narum at KXMB

Wednesday, March 23, 2011

Faith's First Official Snow Day

I think today is Faith's first official snow day. There have been days we have kept her out of school because of the weather but never because the schools were closed. I remember a couple of storms while she was in preschool and I was like, "I'm not taking my daughter out in this."

This year there were a couple of days before she started riding the bus that it was just way too cold to walk her to school. Even though this storm was pretty bad, I was still a little surprised Bismarck had actually called off school! Faith was very excited! Rob - not so much as he still had to try to get to work.

Our parking lot this morning.
I watched him from a window in our hallway as he got our Hyundai out of the parking lot and thought he was actually going to make it. About half an hour later he came inside and said he got stuck after disappearing from my sight as he turned onto Ithica. Thankfully, a good'ol North Dakota boy with a four-wheel drive pickup bailed him out. After getting the car back to the parking lot he called in to work to see who could give him a ride.

I was a little bummed that Faith and I wouldn't be making it to her TV interview for the KXMB noon show. Thankfully, Marci Narum was gracious enough to reschedule the interview for tomorrow. Hopefully everything will be cleared out by then!

Trees across the street laden with heavy, wet snow
This afternoon, Faith and I ventured downstairs to the lobby to do some puzzles and do some of her homework. We also went to our new friend's apartment to visit her and her dog, Tucker - a little dachshund/poodle that Faith really likes. Tucker knows when Faith goes to school and when she comes home because he sees the bus outside the window. He always wants to come to the lobby to give her a kiss! He is a sweet little dog. And that's as far as we got today!

Even though we were excited about having a snow day, it turned out to be pretty mundane. Hopefully this will be the one and only for the year!

Hangin' out in the lobby

Friday, March 18, 2011

Guest Post

The Benefits of Early Intervention Programs

Written by Eli S., who is working towards becoming a phlebotomist through online classes.
Imagine finding out that your beautiful new baby had a developmental problem or a congenital disease. Would you know where to turn for help? Would you wonder how you would find the money to pay for specialized care for your child? It’s a scary thought, but for some parents it’s an everyday fact of life. Luckily, there is at least some cost-free help for infants with disabilities, in the form of Early Intervention programs.
Early Intervention (EI) programs are federal and state funded programs available to all infants and toddlers with disabilities. The programs came about under the 1986 Individuals with Disabilities Education Act, which provided federal funding to states who established EI programs under a certain set of guidelines. The programs are meant to help progress the disabled child’s development, aid their independence, minimize the need for special education, and to help families be able to better meet their kid’s needs.
One of IE’s main benefits is how it fills a huge gap in care for at-risk kids, at a crucial moment in that child’s development. Think about it—once your kid is old enough for preschool or head start, they will be eligible to receive professional help from speech therapists and trained early childhood instructors. But what about before then? Especially if the child is only exhibiting developmental delays and has not been diagnosed with a disorder, the parent might not know where to turn for help. And, if the money’s not there to pay for that extra help, the parents are even less likely to seek it out. The result of this? A child exhibiting special needs doesn’t have those needs addressed early on—letting them go on untreated, potentially getting worse.
The National Early Intervention Longitudinal Study followed up with thousands of kids who received care through EI, and charted the ways EI helped further their development. One of the largest improvements was in the area of communication. 30% of parents reported that their child was better able to express their needs and to talk clearly, after EI. They also had improved developmental abilities, like being able to feed themselves, get dressed, and use the bathroom. For children who had come into EI with motor disabilities, 15% reported that they were better able to use their arms, hands, and feet at the end of their program.
Early Intervention’s benefits can be measured in the kid’s progress, but a perhaps equally important measure is the way it helps parents learn how to help their child, and to advocate for them. At the end of their involvement in EI, nearly all parents (96%) stated that they believed that they could help their child develop. More also felt that they could competently interact with professionals in order to get their child the services they needed. Another unsung benefit of EI: parents reported that they had more hope in their child’s future after their participation in the program.
How does this all add up for the future of a child with a disability? The borderline developmental disability case is the most drastic to consider. After Early Intervention, the child with mild disabilities is able to enter a regular kindergarten class, instead of special education. It has been shown that children develop more in both cognitive and social capacities when they are able to be in regular school rather than special education—thus, this child is better equipped to succeed and progress through each grade. Their parents are able to find them a tutor or speech pathologist who can help them outside of school.
The child who didn’t experience EI? They get shuttled into the dregs of special education, where they have trouble making friends and learning to the best of their ability. The gap only continues to grow as the child goes through special education in the public school system. The parent doesn’t feel empowered to help--they feel that the special ed department is better equipped to help their child than they are. As you can see, the help of early intervention at the beginning of child’s life can mean big jumps in development ---and a huge difference in their quality of their life.

Tuesday, March 15, 2011

Faith the Radio Star

Today Faith and I both got to do something new together - go to a radio station and do a voice over for a GABR radio ad. I was a little nervous and wasn't too crazy about having my voice aired over five local radio stations. And Faith wasn't crazy about the idea of going somewhere after school besides home. She reiterated this fact all the way to Mandan saying, "I just want to go home."

After meeting Kim there (the Medcenter communications director) and the radio guy, we all squeezed into a little room with lots of buttons and a big microphone. I had about four lines to say and I guess it went well considering I did it in two takes. Faith must have forgotten all about home because after I was done she cheered for me saying, "YAYYY!" Then, "My turn, my turn!"

She was not one bit nervous or scared when she stepped, or wheeled, up to the microphone. We told her what she needed to say and she said, "NO, I can't do it." When we encouraged her that she could she said her line but she was sort of laughing and it wasn't very clear. We asked her to do it again and she said, "Do it for the kids!"

The radio guy, Kim and I all cheered and told her she did so great! Then, as usual when she does something that she's proud of, she wanted to rush home to tell her dad all about it. It's so much fun to see her enjoying her GABR Star experience!

Oh and by the way, be sure to listen for the GABR ad on any Cumulus Broadcasting radio station...FOX 96.5, Cool 98.7, Hot 97.5, Country 103.3 and Super Talk 1270.

Sunday, March 6, 2011

Gearing up for GABR

It's hard to believe that the Great American Bike Race (GABR) is only a month away! We have been involved in this event since 2008 when I formed a team called "Faith's Rockin' Riders" with some ladies at Laducer where I worked.

In 2009 we sort of took a break since we were in the process of moving from our old apartment to our current, accessible one but Rob did still ride on MedEquip One's Team.

Last year we formed Faith's Fantastic 10 which consisted mostly of our friends. And this year we are gearing up again but with a slightly different name - Faith's Fantastic 12 since we had to expand our team to 12 riders instead of 10! So now there are 1,200 riders taking part in the event instead of just 1,000!

GABR 2008
GABR 2009
GABR 2010

We are especially excited this year because Faith, along with her friend, Tanner are GABR Stars this year! GABR stars help to promote this huge fundraising event which means their  pictures are seen everywhere! Faith is pretty excited about it, especially having her photo on the cover of Inside Medcenter One - which is Medcenter's monthly publication.

On March 30 she will be interviewed on the noon show on KXMB. She'll be there along with Beth Thune, one of the co-managers of this year's race. I am a little anxious about that as I have no idea what Faith is going to act like or what is going to come out of her mouth! She can be pretty unpredictable! She will also be seen live on the day of the race on KFYR as they present her with her own GABR jacket. KFYR does a live one-hour broadcast from noon to 1:00 on race day which is Saturday, April 9th.

Feel free to check out my fundraising page and if you are able, please support this awesome event that raises money for kids with cerebral palsy and related disabilities. Funds use go towards equipment, services and making homes and vehicles accessible for these kids. We were able to get a $2,500 adaptive car seat through GABR and also Faith's iPAD. If you aren't able to donate, I completely understand and would appreciate your prayers that this event goes smoothly and that there are no injuries to any of the riders (as has happened in the past.)

By the way, our thanks to my brother Todd for sponsoring our team once again which covers the cost of our personalized t-shirts, complete with our team logo designed by our friend Liza Kessel!

Tuesday, March 1, 2011

Tuesday Tidbits - Oh No Not Again!

It seems Faith was just getting over her last three-week cold when she started coming down with another one. "Oh no, not again," was all I could think. Yesterday I sent her to school even though I knew she was tired because she hadn't slept well all weekend. One of her aides said it had been hard for her to stay on task and stay focused. Last night she was up at 3 a.m. so I knew she wasn't going to do well in school and kept her home. She has been sneezing and sounds a little stuffy but I PRAY she has a good sleep tonight and she can kick this cold much faster than her last one.

Last week I took her in to see her pediatrician just to touch base with him since he was available. And of course she was perfectly fine then! He said she may have had RSV which can last three-four weeks. Hopefully that is not the case again this time. I told him I was concerned about her throat because she seems to get a sore throat a lot and was wondering if something was going on with her tonsils. He said as long as she is not snoring at night when she sleeps then her tonsils should be fine.

Last week we also celebrated Rob's birthday. I had bought him some miniature chocolate cupcakes and some ice cream. That evening, when we were having cupcakes and ice cream, Faith insisted that Daddy blow out some candles. I rummaged through the drawers and found a candle with the number 7 - left over from Faith's birthday that we didn't use. So we stuck that candle in one of the little cupcakes then Faith said we had to sing Happy Birthday. I guess she knows the routine!

Sure glad we had this one candle for Rob to blow out!

Last evening I received a phone call from my cardiologist at Mayo. He was filling in some information for a research study that Mayo was conducting with UCLA on women who have had the Fontan heart surgery and who have also been pregnant. The last time this study was done, which was in the 1990s - there were only about 15 women with the Fontan who had gotten pregnant. I'm very interested to know what those numbers are now.

Since I had hm on the phone I asked him about my official diagnosis since some paperwork I had showed it to be Double Outlet Right Ventricle (DORV) but on some of my Mayo documents it was listed as Double Inlet Left Ventricle (DILV). For a long time, I just sort of assumed they were the same thing and were being used interchangeably. Upon asking Dr. Cetta, he told me the DILV diagnosis was more accurate since I only have one functioning ventricle and with DORV, even though function is limited, there are still two working ventricles. My mom said when I was born they didn't even have a name for it!

Now as I do research, the DILV makes much more sense as some of its side effects can include arrhythmia and congestive heart failure, both of which I have had. I also found it interesting that with DILV there can be reoccurring bouts of pneumonia - which I have also had. So anyway, sorry to bore you with all of this cardiology talk!

And finally in other, more exciting news my brother, Todd and I are going to be opening our own Internet store on zazzle.com where we will be making and selling our own bumper stickers, t-shirts, tote bags and everything else you can stick a slogan on! Todd has been coming up with some good ideas for bumper stickers - especially for those in the oilfield. That's probably the last thing I need is another project but I think it will be exciting! I'll be sure to let you all know when it officially opens.

Faith's top front tooth was so loose I decided to gently pull it out. No tying a string
to her tooth and slamming the door shut for this little girl!