Faith's Mom's Blog

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 it f

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 fir

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 w/ whip 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 fixe

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, 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 about our situa

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 proved 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 having a 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

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 relatives. I

Faith did great yesterday 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 done h