Faith's Mom's Blog

This year has certainly been a mix of blessings and challenges. Faith kicked off the New Year by getting another UTI. Along with that, she somehow managed to break a bone in her wrist and had increased anxiety due to some staff changes at her day program.  Also, she had gotten a new chair last August and we've already had to make numerous repairs and adjustments. All of these things have resulted in many extra appointments with doctors and specialists, including a urologist, orthopedist, psychiatric nurse practitioner, and DME technician.  Thankfully, the broken bone in her wrist healed on its own! We also got some good news that the slight curve in her spine has not gotten any worse and she doesn't seem to be having any pain in her back or hips.  We still don't have answers for the recurrent UTIs, and she is recovering from another one as I write this. I have tried a few different supplements to prevent them but haven't found the right one yet.  Hitting a huge mileston

It's hard to believe that Faith is 19 years old and has never had a major illness or extended hospital stay since she was in the NICU. The only other time she had to stay in the hospital was when she had her g-tube placed when she was two years old. That is, until now. And to think it all started with her having a simple outpatient procedure that had nothing to do with the reason she was hospitalized.  Day 1: Thursday - the Procedure  Faith and I got up extremely early as she had to be at the clinic for her outpatient procedure. The procedure was a lumbar puncture in order to do a test dose of medication called baclofen, which would help reduce high muscle tone and spasticity. If the results were good, and it helped her muscles relax, we would have the option (in the future) of inserting a baclofen pump so that she could receive the medication continuously via a catheter in her spine.  I stressed the importance of giving her anti-nausea medication before the procedure because I kno

Today I thought it was quite fitting that on my one year anniversary of my new pacemaker, I was wearing a 24-hour Holter monitor! It's not because I'm having any issues with my pacemaker. Instead, I'm just preparing for my upcoming cardiology appointment next month.  Thankfully, my cardiologist from Mayo comes here to Bismarck, so I don't have to make the 1,000-mile round trip again! By the way, isn't amazing how small these Holter monitors are nowadays? I remember having to wear much larger ones that could not be hidden very easily, plus it was hard to sleep being attached to a big clunky machine. Last night, I hardly even knew this little one was there! I got my original pacemaker in August of 1999 but because the lead was getting old, my cardiology team wanted me to get a new one. It was last year on this day that I was recovering from the procedure. It still bends my mind how God took care of every single detail and that I had found enough people to look after F

Oh. My. Goodness. What a month! It's certainly been challenging, but thankfully there were a few bright spots to help us through. At the very end of September, both Faith and I came down with colds. They would not go away! Faith was really stuffed up and seemed pretty miserable. I thought she might have a sinus infection so I took her to the walk-in clinic. Although I didn't think we had COVID, I asked to be tested just to help give me a peace of mind.  They only had the nose swab available. I was nervous about it being traumatizing for Faith. As we waited for the nurse to come back in the examination room with the test, I prayed for Faith that she wouldn't have a tough time. I should have remembered to pray for myself!  I told Faith I would go first so she would know what to expect. When they stuck the swab way up my nose, I nearly started crying. It gave me flashbacks to when the breathing tubes got pulled out of my nose following open heart surgery. It was sort of the sa

Grandma Dorothy holding me at 5 months of age In February, 1974 when my mom took me home from the hospital, she thought she had a perfectly healthy baby. But when her mom came for a visit five weeks later to see her granddaughter, she asked why my lips looked discolored. Grandma Dorothy also noticed I slept a lot, even for a newborn. Mom assured Grandma she would ask the doctor about it during my six-week checkup. Mom took me to the same clinic in Wolf Point, Montana, where I had been born. She and Dad were living in a tiny town called Luster, where Dad worked as a ranch hand. My regular pediatrician was unavailable. A young doctor, fresh out of medical school, examined me instead. Dr. Mattley quickly agreed the bluish tint to my lips was disconcerting and because of it dubbed me a blue baby. “Her body isn’t getting enough oxygen, which is why her lips and fingernails are cyanotic,” he said. He also detected a heart murmur. An X-ray confirmed a possible heart defect. F