Faith's Mom's Blog

Though it wasn't a white Christmas - not too many people minded considering the astronomical amounts of snow we have received the last three winters - it was definitely a Merry one! Following are some photos of some of our special moments this Christmas. Our Happy Birthday Jesus cupcakes that Rob and Faith delivered to Faith's teachers and therapists at school.  Our little family Faith enjoying a special visit from Auntie Barbara and Uncle Todd Faith's new hat! Faith finally reaches December 24th on her LEGO Advent Calendar! Faith's personalized cupcake painting to match her cupcake room! Riding along with Todd and Barbara on the way to Watford City. The Lawlar family on Christmas Day Happy to have Barbara and Amber join us as sisters! Funny boys - Donnie trying to take a picture of the inside of Preston's mouth! Me and Dad - 2 NDSU Alumni who will cheering for the Bison to win a national championship in January! A beautiful ...

Recently on Facebook, I saw that someone had written to one of her friends, "I heart you." I thought it was cute and quite appropriate to say to my Mayo doctors, especially since they are cardiologists! The first time I ever met a doctor from the Mayo clinic was shortly after my cardiologist in Fargo told me I might need to start taking a blood thinner called coumadin because my right atrium was grossly enlarged and then neglected to call me back to let me know for sure.   I ended up having to call them and he told me to just stick with an aspirin a day. Well, there is a big difference between using a baby aspirin a day and coumadin! Of all people, my cardiologist's nurse told me about the Mayo doctors who come to Bismarck, North Dakota. After some pushing from my mom (who was really worried about me because I was not well at all but was still trying to work full time) I finally called and set up an appointment. I met Dr. Hagler and Dr. Ackerman in April of 1999, and ...

Since my last post regarding my pacemaker battery change , I unfortunately have not been doing as well as I would have hoped. My hopes for higher energy levels have been dashed as I have been even more tired than usual. On Monday night, I began feeling weird palpitations and sometimes my heart would beat so hard that I could see my chest pounding. I thought maybe my body just needed to adjust to the new battery. The next day at work though, I noticed the same symptoms. On my afternoon break I tried to call the pacemaker clinic but of course I couldn't get through. When I got home in the evening, I tried to call again. This time, the surgeon who performed the battery change was on call, so I was able to speak with him. At first, he wanted me to come to the ER and get an electrocardiogram done but I told him it wasn't doing it all the time so then he told me to come in and get hooked up to a Holter monitor. On Wednesday during my lunch break I got hooked up. I had to wear i...

Though Medcenter wasn't having any Black Friday specials, Faith and I both found out that it was the best day to have an appointment. Everyone in Bismarck was either gone, shopping or sleeping, so we got into our appointments right away and were in and out very quickly. For my appointment, I arrived at 9:30 to get my pacemaker battery replaced. A pacemaker check on November 11 via telephone showed that my battery was in ERI - the stage at which the battery begins to conserve energy because it's getting low.  Apparently, it had been at that stage as of October 23rd - which is the day before I started my new job and also the day before I once again had health insurance. When a pacemaker is at ERI, it usually has about three months of battery life but because my heart sucks the juice out of my battery at a faster rate than normal, they advised me to get it changed as soon as I could. It worked out that I could get in the day after Thanksgiving - a holiday for us at work. At fi...

Throughout the month of November, I have noticed many of my Facebook friends celebrating the month of Thanksgiving by updating their status each day saying what they are thankful for. I haven’t been doing this on Facebook, so here are my 30 days of thankfulness all in one day. During the month of November these are the things I have been particularly thankful for: 1. JESUS 2. My wonderful husband and our amazing daughter 3. Our accessible van 4. Wi-fi 5. Finally being a two-car family 6. Living in Bismarck and in North Dakota 7. Praying friends and family 8. JOY International women’s ministry 9. Health insurance 10. Heaters that emit warmth 11. Wonderful Christian music 12. Our amazing respite care ladies who look after Faith 13. Having a good job 14. Warm coffee drinks 15. Faith’s school and everyone who works with her there 16. Great haircuts from our stylist, Julie 17. Good books to read 18. Knowing a trustworthy mechanic who fixed the...

Rob and I have certainly had our share of transitions since getting married nine years ago. About seven months after having Faith, we closed our desk-top publishing business in Watford City and made the move to Bismarck. This was all totally unplanned but due to Faith's medical needs, we felt God was preparing the way for us to make such a huge transition. Since coming to Bismarck/Mandan in 2004, there have been more transitions including a few moves from apartment to apartment and having to get used to Faith's adaptive equipment, tube feedings, and the many therapy appointments that go along with having a child with special needs. It seems that just when we get into the groove of a new transition, another one comes our way. And more often than not, they are quite unexpected. This latest transition involved me going back to work after being home with Faith for three years while Rob took his turn once again to be a stay-at-home dad. At first, Rob and I were a little stunned ...

Faith recently went to see a surgeon regarding the placement of a baclofen pump . At our last appointment with her specialist who oversees all of her therapy we were shown x-rays that showed her left hip was about 40% out of its socket. For this reason, we set up a consult with a surgeon and were looking at getting the baclofen pump sooner rather than later. I was surprised to find out that the surgeon has some reservations about inserting the baclofen pump. The main reason for his reluctance is that Faith is still pretty small. They normally won't put the hockey-puck-sized pump in a child that is less than 45 pounds, which is pretty much what Faith weighs.  There is extra concern with Faith because there is even less room in and around her abdomen due to her mic-key button. When Rob mentioned maybe waiting a year until Faith grew more, the surgeon said that was probably wise. But still, there is her hip to think about. I really don't think her other doctor is going to be v...

First of all, I feel totally guilty for neglecting my blog and I cannot believe it has taken me so long to be able to play catch up. We recently drove our van all the way to Toronto and back home again - and logged 2,885 miles in doing so.  When I told Faith's teacher that she would be missing school for eight days as a result of our vacation, she asked if we would do a travel journal so Faith could share it with her class. Here is that journal that she got to share with her class on her 8th birthday, which was this past Tuesday. On Saturday, October 8, 2011, me and my mom and dad left from Bismarck, North Dakota and drove in our van all the way to Toronto, Ontario Canada.  Faith is all settled in and ready to do some serious traveling! Canada is another country and is often called “our neighbor to the north” but to get to Toronto we always kept driving east. This is where my dad is from, so we went to see my grandparents who live there along with other friends and rela...

Faith did great yesterday with getting her x-rays taken. She stayed nice and still so that the technicians could get three good pictures of her hips. Shortly afterwards we headed upstairs to talk to the doctor and to see the pictures we had just taken. When the doctor pulled them up on the computer, even I could tell it wasn't good news. Faith's left hip has proceeded to come out of its socket. We had been hoping and praying for no changes, as the last two x-rays have shown. This time, though we could clearly see this was no longer the case. Her hip is about 40% out of its socket. At this point, we know we have to take action. If not, Faith's hip will, over time, become completely displaced. We set up a consult with a surgeon for November 1. From there we will set up another date for Faith's surgery to get her baclofen pump . This will be the first procedure for Faith where she will have an extended hospital stay - most likely 3-5 days. Thankfully, this can all be don...

Lately I've been inundated with paperwork so that Faith can continue to receive SSI and Medicaid. Just recently I had to fill out forms to prove to the good  people at Social Security that Faith still has a disability and is still eligible to receive funds. It was a lot of paperwork considering I had to verify all of her doctor's appointments within the last 12 months and also to prove she had been seeing a physical therapist, occupational therapist and speech therapist.  Faith went to the SSI office with me on Monday since she didn't have school. The little waiting room was packed but we thankfully didn't have to wait long. When we left Faith yelled out, "Bye guys!" She was pretty happy to get out of there. Most people who know Faith knows she has a slight obsession with cupcakes. She always wants cupcakes for her birthday and for Christmas we make and give out Happy Birthday Jesus Cupcakes . She has had a pair of pink cupcake pajamas and now has green on...

Had it not been for the one fateful day that I had a craving for Little Caesar's pizza, I might not ever have known that Barney was coming to town. But there I was at the counter waiting for my medium pepperoni pizza when I noticed a flyer with a picture of the big purple dinosaur. He was coming live to Bismarck with his friends, BJ, Baby Bop and Riff - I couldn't wait to tell Faith. Barney and friends appear live at the Bismarck Civic Center I don't know how old Faith was when she saw Barney for the first time. A receptionist at pediatric therapy gave us a Barney VCR tape and Faith loved it. I started letting her watch Barney on PBS and then we started collecting the DVDs.  All the while, I couldn't believe I was letting my daughter watch Barney - me and my friends made so much fun of him when he first came out on TV. But as I watched along with Faith, I discovered all of the cute songs and some of the good things that Barney had to share. I will admit though tha...

Second graders at Centennial Elementary get to enjoy a program called SPLASH that gives them a chance to go swimming once a week in September. Instructors at the YMCA teach the kids different swimming strokes, water safety and survival skills. The kids are in the water for about one hour. Since Faith loves swimming, I thought she would be very excited. Unfortunately, though she seemed more nervous about it than anything. We skipped out on the first week but made it this week and she had a blast! It was hard to tell who was having more fun - Faith or her instructional aide that was with her in the pool. Faith kicking her feet up in the water Faith tries to touch the bottom Faith tries to do a back float

This past weekend we took a trip that was sort of spur of the moment. We have been wanting to take a little trip to see what road trips are like in our van, so we decided to venture to Aberdeen, South Dakota. It took us a while to get out of our parking lot because we kept having to run back upstairs for things like maps, plastic bags, and water. Of course, Faith also needed her personal PlayStation (PSP) so she could watch her videos and listen to her music. Since we were going to be in southern North Dakota, I wanted to go through Ashley on our way to Aberdeen. I used to live and work there so I just thought it would be kind of fun to see the little community 13 years later.  We ended up missing the turn to Highway 11, and then we had to detour because of road construction which led us to Eureka, South Dakota. Rob was thrilled because he is a big fan of the Sci-Fi TV show , Eureka , which actually takes place in Oregon but is filmed in Vancouver, British Columbia. We have...