Faith's Mom's Blog

Faith and I barely made it through Christmas before she got hit hard with the flu bug. (Which is why this blog post is a bit delayed!) Leading up to the night of the 25th, we were enjoying lots of music, goodies, and family time.  One event that has become a tradition for us is going to the Nutcracker ballet. This year's performance marked the 8th one in a row that we have attended! We love everything about the Nutcracker - the music, the costumes, the different scenes, the talented dancers, seeing some of our friends onstage, and the seasonal excitement in the atmosphere! Ready to go to the Nutcracker! Of course, the week after the Nutcracker always proves to be a busy one, as it is one week before Christmas! Faith had her usual therapies and while she was at her day program, I would do all of my running around. During one of the gift shopping excursions, I ran into my brother Todd! We had lots of fun catching up, right there at Fleet Farm!  My little bro and I hanging out at...

One of the unfortunate things about cerebral palsy (CP) are the many co-occurring health issues that go along with it. Because of this, those with CP have more doctors, specialists, and other kinds of providers they see on a regular basis. While the CP itself mainly affects the muscles, other areas of the body are affected as well, which results in more medical challenges.  For instance, besides CP, some of other Faith’s health issues include: ·          Gastroesophageal reflux disease (GERD) and other digestive issues ·          Scoliosis ·          Bowel and bladder incontinence ·          General anxiety Because of these co-occurring conditions, we have more appointments than the average person. At times, it can all be a bit overwhelming. Faith enjoying a nice fall day On September 23 rd , we ended up in the E...

Last weekend, Faith seemed to be struggling with a cold. On Sunday morning, I thought she had slept it off, but unfortunately, it hit full force that evening. Because she was so stuffed up, and had a lot of drainage, she did not sleep well that night. I tried to put her adjustable bed up as much as I could, but it still wasn't enough. Around 3 in the morning I put her in her chair where she slept for a few hours. After I put her back into bed, her sleep was still pretty disruptive. Finally, around 8:30 she had had enough and just wanted to get up for the day.  On Monday, we called to cancel her Tuesday therapy sessions. She was bummed about having to miss aquatic therapy and occupational therapy but took it well. I was trying my best to help her feel better by giving her nose spray (which she was actually asking for), keeping her humidifier going, and also doing this face mask thing that makes steam so that she can breathe it in. She calls it her inhaler.  On Wednesday, she ...

This page contains affiliate links and Faith's Mom may earn a commission if you use them. As an Amazon Associate, Faith's Mom earns from qualifying purchases.  Learn more.   Ever since Faith was born, she has struggled with her digestion. When she was in the NICU, she would spit up after eating even the tiniest amount of formula. Her dad and I were convinced her tummy was too small to handle large volumes of food. Sometimes when she ate, her heart rate would drop really low, which is why she needed to be in the NICU for longer. She just could not get the hang of eating and breathing at the same time!  Faith receiving food through an NG tube in the NICU.  Grandma giving Faith a bottle when she was 2 months old.  After finally bringing her home, eating continued to be an issue as she struggled with severe reflux and constipation. We tried various formulas, but she was never able to drink enough formula to gain a lot of weight. She also had trouble burping, and she...

Every December, I look for Christmas shows to record and then watch them after Faith has gone to bed. I love curling up with a fuzzy blanket and a cup of tea with the Christmas tree lights on, watching a holiday program. Usually, there is Christmas music involved!  This year, one of the shows I watched was Little Big Town's Christmas at the Opry . It was really good, and one of the most memorable performances was the country band's rendition of the Merle Haggard song, " If We Make It Through December ."  When I heard them sing that song, I resonated with the title. Faith and I had both come down with COVID. Before that, I was just getting over a bout of the stomach flu. (Thank goodness Faith didn't catch that!) In between sicknesses, Faith and I managed to make it to The Nutcracker, but that's about the only thing we did in the days leading up to Christmas.  We made it to our 7th annual Nutcracker performance!  One thing I missed that I was very disappointed a...

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 miles...

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 be...