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

Last year I had a tough time getting used to the idea that my daughter had somehow turned into a teenager. This year, I'm having a hard time believing that my daughter is 14 years old. 14! How in the world did that happen? Admittedly, her birthday started a little rough with Faith waking up saying she didn't want to celebrate. I chalked it up to her being really tired due to her long day on Tuesday which had begun at 7:30 a.m. If you know Faith, you know that is really early for her. Somehow in the midst of her crankiness, we managed to get her up and into her chair for her first feeding of the day without the occurrence of any major battles. When Faith heard her auntie Joh singing Happy Birthday to her while leaving a message, her mood shifted to being happy and joyful. We called Joh back, who had taken time during her lunch break to make the birthday call. We also talked to her grandparents in Canada, which helped as well. After the phone calls, she decided she di

It can be hard for Faith to try new things. She loves routine, which makes it hard to adjust to change. While that’s true for many us, it can be nearly impossible to get her to try something different. There are some things I just know she’ll love if she’s able to give it a chance. And that’s exactly what happened a couple of years ago with New Life’s Immersed Night of Worship. A lady from the worship team started the monthly event, and even though Faith was a little hesitant about going at first, she has come to truly love it. At Immersed, Monica simply stands at her keyboard and sings worship music. Those who attend can worship in whatever way they want to - by singing, dancing, sitting quietly, or even lying down. It's a night that the Holy Spirit is free to move and Monica lets the Spirit lead. Over the past several months, there has been as many as 30-some people filling the small room at the church office. Other times, there has been less than 10. People