Appointments and More Appointments

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 ER because I noticed Faith was much more tired than usual. She was also insisting that she had pain in her arm and needed to see the doctor. I suspected a UTI, so off we went to the ER. Sure enough, she had one. They even took an x-ray to rule out anything wrong with her arm. That part was fine.

When I told her physical therapist about this, she said that Faith may have been experiencing somatic pain, meaning the pain from the infection was causing other parts of her body to hurt. It was either that, or she knew she didn’t feel right, so she tried to verbalize that something hurt.

I really dislike going to the ER, but it is the best place for them to get a urine sample as they have to use a catheter. She is also much more comfortable in the bed with rails than on the exam table, which makes it easier for the nurses to get the necessary sample. We ended up being there for about 4 hours.

Faith in the ER 

That night after taking her antibiotics, she ended up throwing up and was only able to sleep in her chair. (She ended up aspirating on her vomit and developed pneumonitis afterward, but thankfully no infection!) The next day she asked to take the antibiotic by mouth instead of having me put it in her g-tube. It had to have tasted gross, but she took it like a champ, and it was much easier on her stomach. She ended up staying home from her day program the rest of the week recovering.

On Tuesday of this past week, she finally seemed like she had bounced back 100 percent. And it was a good thing, because she had three appointments during the week. Her first appointment was to finally get her back brace. We had seen her physiatrist at the end of June and according to her x-rays, the curve in her spine had increased. He told us a back brace could help prevent it from getting worse. In July we had the appointment to get fitted for the brace. She even got to pick out her own color and design.

Due to a mix up with the order, we didn’t actually get the brace until this past Tuesday. The brace contains a front and a back that gets strapped together at the sides. I questioned though, how we were supposed to do her feedings as there was no way to access her mic-key button with the brace on. We were told to just take the front part off, which I did not think was convenient whatsoever.

In the midst of everything, we celebrated 3 years of living in our current apartment! 

On Wednesday, Faith had aquatic therapy, which she had missed the previous week due to being sick. She was happy to be back in the water, and even did some side-lying, but I noticed that she did not seem to be feeling well. 

Normally, she loves it when the physical therapist spins her around in the water, but this time, it seemed to upset her tummy. She had just gotten done with her antibiotics the night before, so maybe her tummy wasn’t quite back to normal. We ended the session early.

After her day program, we had a surprise birthday party to attend. I knew it had been a busy day for Faith, but she was so excited to go to the party and ended up having the best time ever! We didn’t get to bed until after 11 and then had to be up the next day to get x-rays taken while wearing her brace.

Faith feeling better and attending a birthday party!

Her physiatrist wanted to ensure the brace fit properly and that it was doing the job of helping to straighten her spine. Faith had been very anxious for this appointment as this doctor usually gets her out of her chair and onto the exam table so that he can check her range of motion in her arms and legs. 

He also puts her in a prone position to assess her back, which she hates! Normally, these appointments last well over an hour, but as luck would have it, the doctor had to be at day surgery, so the appointment was only about 15 minutes -- not enough time for Faith to get out of her chair. She was so relieved!

While the brace seemed like a good fit, and it did reduce the curve in her spine, the doctor wasn’t happy that it didn’t have access to her mic-key button, as stated on the order. So, now we get to make another appointment so that we can get it adjusted.

Faith in her back brace, which needs some adjustments 

Next week, Faith also has a meeting with her occupational therapists and DME provider to discuss the possibility of getting a power chair sooner rather than later! Another appointment she has will be with a mental health provider for an evaluation to see if we can improve her coping skills when she is anxious or feeling stressed. I really don’t want to put her on another psych med, and her primary care provider suggested she try counseling, especially since Faith enjoys interacting with people. Then, she was one more day of aquatic therapy before we need to get more visits approved through Medicaid.

Faith’s schedule is full, and in the midst of transporting her to her day program and all of these appointments, I get to plan a birthday party for a soon-to-be 22-year-old. There truly is never a dull moment!