Faith's Mom's Blog

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...

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 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.  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 pumps in ch...

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! Daddy helping Faith take some steps down the hallway On Tuesday, Rob took Faith to get her x-rays and then on Wednesday he took her to see the physiotherapist. Upon reviewing Faith's x-rays of her hips, the doctor could not quite believe what he was seeing.  The hip looked like it was in the same position as it was five months ago. He was in such disbelief that he sent Rob and Faith back downstairs for another round of x-rays. Faith had to stay on the table in case the doctor wanted more shots taken. She laid there as patiently as she could for about 30 minutes before the doctor finally called them back upstairs. Even though her hips have remained stable, the doctor pointed out...

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...

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...

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...

There are two ' B ' words that are constantly on my mind and are causing me some serious emotional strain. B riefs and B aclofen.  You may wonder what's the big deal about briefs. Well, it is a big deal when your child is 7 years old and has to wear these large plastic diaper like products that resemble a small garbage bag and seem very uncomfortable. Since Faith has been growing (I know that's a good thing) she has finally outgrown her size six diapers which is the largest size they make. She really doesn't seem to mind them but it pains me each time I put her in one. Briefs seem so much more final than diapers - like she will be wearing them forever and I don't know if I'll ever be able to accept that. We haven't ever really worked on potty training. We don't even know if it is a reality because she may not be able to control her bladder. But now because of these briefs and my dislike for them, that is something I really want to start working o...

I must say, after the long weekend, I am feeling a bit guilty. We didn't have too much going on, so we mainly stayed indoors, and I let Faith watch way too many videos. When Sunday finally rolled around, she was bored and a bit cranky. Before having kids, I always told myself I would not be one of those moms who lets the TV babysit their kids. Things sure turn out differently when you actually have kids! When Faith comes home from school, that is all she feels like doing. She is so tired from her long day, which not only includes classroom time but also working hard with her special education teacher, driving her power chair and any other therapies she might have for the day. By the time she gets home, she is spent.  I don' feel as guilty letting her watch so many videos after school but over the Thanksgiving long weekend, I am going to try hard to limit her video-watching time and find other things for us to do. I don't mind Faith playing on her iPad but it's too eas...