Faith's Mom's Blog

Twelve years ago in late April, we were given the dreaded news that our daughter had spastic quadriplegia - the most debilitating form of cerebral palsy.  I will never forget looking down at my six-month old baby, fast asleep in my arms, while her doctor talked about the possibility of her being in a wheelchair as she became older.  At the time, it was not like me to show such public displays of emotion but on that day I couldn't hold back the tears. In the days that followed I had so many questions.  Of all the questions though, there was one that I asked more often than others. "Can God heal my daughter?" I came to believe that He could, even though I knew it would take a miracle.  Faith shortly after we brought her home from the NICU where she had a 73-day stay By definition a miracle is, " an unusual or wonderful event that is believed to be caused by the power of God." When a true miracle occurs, there is usually no scientific explanation for

For most of Faith's life, we have focused on doing some of the more traditional therapies such as occupational and physical therapy in order to help her reach her fullest potential. More recently, though we have been trying some alternative forms of therapy such as chiropractic care and music integration sessions. Honestly, we have seen more progress this past year in trying these different therapies than we had been seeing with years of following traditional methods. You can read HERE to see how Chiropractic Care has benefited Faith and HERE for music therapy.  Chiropractic care has benefitted Faith immensely Unfortunately, most insurance companies, including Medicaid does not cover these different types of therapies as they are still considered experimental. One of the local fundraisers does not allocate funds for these alternative therapies for the same reasons. This means we have been paying out of our pockets and it is now getting to the point that we have to decide

Upon reflecting about the month of July, I have come to the conclusion that Faith has never had more appointments in one month than she did last month. She had over a dozen chiropractic appointments, eight ABM lessons, two visits from the Easter Seals coordinator, one occupational therapy consult, one optometrist appointment (and a partridge in a pear tree!). The Easter Seals visits were merely a formality as Faith has a new case worker and we needed to update some paperwork. Her disability case manager came along on one of the visits. Her optometrist appointment was her annual routine eye exam and we are glad to report that Faith's eyes continue to remain the same and she still isn't needing glasses. We are thrilled about this as Faith had glasses at one time and we also had to do patching on her eyes but her vision and her eye muscles continue to function normally! (Praise the Lord!) Faith getting a chance to relax! In June, Rob took Faith to see a chiropractor for a c

The month of May is already nearly over - it makes perfect sense why it went by so fast as this month was jam-packed. It's hard to believe that June is just around the corner. I can share in our pastor's sentiment when he said the year is half over but it seems like 2013 has just begun! On the first Thursday of May, JOY Internationa l had its last Java JOY of the season. We had a great get-together as we celebrated moms and discussed the powerful prayers of a mom. We had a wonderful panel of three amazing moms who shared their hearts on praying for their children. We also shared testimonies of answered prayers for ourselves and our children. As Java JOY coordinator, I am relieved to be taking some time off but I already have lots of ideas for our next season which starts up again in September! Me with our mom panel at Java JOY Me and Faith on Mother's Day Me and Faith playing our favorite game - Wheel of Fortune At the beginning of the month we had another ro

To someone who might not know Faith well, or to the stranger observing Faith, her movements probably seem pretty abnormal. Her tone kicks in and her muscles tighten, not allowing her to move or relax. Every once in a while, she throws her arms up in the air for no apparent reason. When she's tired, her head hangs to the side and she can barely keep it up, even while sitting supported in her chair. But to me, this is Faith and this is how she has moved for most of her life. She has spastic motions that are anything but graceful. While sitting with me, her hand will shoot up and slap me in the face. There is no reason - no purpose for some of her movements - that is all she and her parents have known. We are in a constant battle with her high muscle tone. Sometimes she tightens up so stiffly we can barely pick her up. This is how it has been for her nine years of life. This is normal for us. This week I learned life does not have to be this way. This week I've seen Faith move

Did you know that this week is Brain Awareness Week? I find it interesting that this is the week Faith will be introduced to an Anat Baniel practitioner and taking her first Anat Baniel Method (ABM) lessons during this week in particular. The ABM practitioner we are seeing is coming here from Milwaukee, Wisconsin. Rob met her in January during a workshop about ABM. Through another mom of a little boy with cerebral palsy, we learned the practitioner is coming back to Bismarck so we decided to schedule Faith for some lessons (they call them lessons, not therapy sessions). The mom I talked to recommended getting the book, "Kids Beyond Limits" by Anat Baniel before the lessons started and I am glad I did! Through working with Moshe Feldenkrais , Anat Baniel has developed her own method of working with kids with special needs. For the past thirty years, she has worked with kids who have cerebral palsy, autism, ADHD, undiagnosed developmental delays and any other type of spe

I thought it would be interesting to see what blog posts in 2012 had the most views. I was a little surprised by the post that was visited the most. I was also very proud that the guest post written by my father-in-law made the top 12, in fact it almost made number one! I had a big surge of views during the month of December. In fact, four of the posts I put up that month ended up getting more page views than the posts I had written at the beginning and middle of 2012. I wrote 42 posts during 2012 and here are Faith's Mom's Blog top 12 of 2012: Number 12 - Good News About Faith's Hips publish date: 2-25-12 It's Saturday morning and after a busy, somewhat stressful work week, I can finally take a moment to enjoy a nice cup of coffee while doing some writing. Sitting here, I am reflecting on the wonderful news we received on Wednesday. Faith's left hip has not pulled out any further from its socket! Read More Number 11 - Conscious Sedation - A New Exper

As with most kids in this country who have a physical impairment, our daughter has access to one of the most basic necessities of a handicapped child - a wheelchair. But for those disabled children in third-world or communist countries, many children with cerebral palsy or similar disabilities cannot so easily attain a a much-needed chair that offers the simple gift of mobility. For just a $150 donation, a pediatric wheelchair can be given to a child in a third-world country It is truly heartbreaking that these children who have no means of mobility are left home to lie in bed all day while their parents go to work. These children cannot attend school because they have no way of being transported to school or even the ability to sit up while at school. Some children who may have use of their upper bodies crawl on the ground to get from one place to another. The worst part for these families is that they are looked down upon for having a child with special needs. Sometimes the fa

This week has definitely been interesting for our family. I started my new work schedule on Monday and it was so wonderful crawling into bed with Faith in the morning and gently waking her up. When she realized I was in bed with her, she said, "Mommy are you getting me ready for school today?" I pretended not to know how to get her ready for school so she proceeded telling me what to do and in what order. When I gave her a kiss goodbye she had the sweetest smile on her face. Me and my sweet little girl Rob was able to drive me to work since he needed the van that day. It all worked out perfectly and I was so happy to have spent the first part of the morning with Faith. Now fast forward to Thursday. Faith woke up saying she didn't want me to get her ready for school and when I tried to start the routine she became quite upset and demanded me to call the school to cancel. Where oh where was my sweet little girl? Her fit escalated to screaming and yelling for over an

Even though Faith's x-rays have shown that her hips are stable and have not come any further out of her sockets (especially her left hip), we decided to move forward with getting the baclofen pump . We felt this was the right decision and that Faith would benefit if the pump helped to decrease her tone. After making the decision, Rob sat down with Faith and explained to her that she was going to be getting something called a baclofen pump and that she was going to have to be in the hospital. She of course, was not too happy about this news and every now and then she would let us know it by yelling, "I'm not going to get a baclofen pump and I'm not going to the hospital." Rob called the clinic to get the ball rolling and ended up leaving a message. We were surprised when no one returned our phone call right away. Then when we finally did hear from them, they gave us the surprising news. They had made a managerial decision at the clinic to stop putting baclofen

First of all, I'd like to thank the 2012  Faith's Fantastic 12 GABR Team: Becky Eske, Beth Kaylor, Cassie Brazell, Gwen Barone, Julie Jensen, Katie Huizinga, Kent Kaylor, Krysta Wrath, Rob Bousfield, Sarah Hoffman, Tanya Steckler and Brooke Schaff.   Thanks for riding and for fundraising! CLICK HERE TO SEE FAITH'S FANTASTIC 12 Also, a huge Thank You to all of you who donated to me for Faith's Fantastic 12:  Mike and Deone Lawlar (Grandpa and Grandma), Cousin Vicki Hammond, Friends Fran Dwelle, The Bitz Family, Tom & Diane Hahn, Michelle Stahl, The Sago Family, Peg Walth, Sandy Bauer, My dear college friends Janee Anez, Resa Hartl, Kristi Holzer and family, Faith's cousins, Sydnee and Kenzie Lawlar, Faith's auntie of sorts, Nicole Samuelson and family, Coworker Blaine Kincaid, Barrett Pharmacy & Variety of Watford City, Centennial Elementary School's staff and students and oh yeah, that mystery man from Marathon Oil! ALSO thanks to my brother Todd

I am so very proud of both Rob and Faith. I only wish I could have been there with them. Today was a new experience as Faith's medical providers used conscious sedation while administering her botox shots. I was pretty bummed that I couldn't be there. January marks our busiest month at work so taking time off is limited. I already have to take time off on Monday for an appointment. So there I was this morning at work wanting to be with Faith and praying that all would go well. Rob and Faith had to be at the hospital at 8:30. Faith's pediatrician was there, along with a few other of Faith's favorite medical providers. She was especially happy to see PBS playing on the television. Seeing something familiar helped to keep her calm. Rob and I have struggled in the past wondering if conscious sedation was the right thing to do for Faith. It just didn't seem like giving her sedation drugs every time she got botox was very good for her. In the past during her botox i

Today Faith had her annual eye appointment. Her special education teacher from school came along because she had some questions regarding Faith's vision. Larissa has noticed when working on reading with Faith in school that if there is a sentence of three words like: The Big Ball Faith will just pick out the word she knows and say that one. And if she knows all three words in the sentence she just looks and  picks one but never says them in order from left to right. Also, Faith's teacher said that when there are three lines of numbers like: 1  2  3 4  5  6 7  8  9 Faith can read them if Larissa is pointing to them individually but Faith can't read the numbers from left to right without them being pointed to. She just zones in on one number and says the one that catches her attention. I am so thankful for Faith's amazing special education teacher who goes out of her way to make sure Faith reaches her fullest potential. I've noticed at home that when