Fidelity's 6 month Update
“How is the baby doing? We’ve been praying for her. Is she better?”
People ask me this question all the time. It is a hard one for me. The truth is that she has a life long condition, so she won’t be “better.”
Well… kind of… I mean she is improving, but she is not cured. It’s hard to explain in a sentence.
Here is what she has been doing:
She still relies heavily on her feeding tube. We offer her a bottle, but usually she fights us about it and we finish her feeding through her g-tube. We have grown accustomed to it. There are times when it is handy, when we can get her started and be able to walk away and do other chores. Then there are times when I feel like a bag lady, packing around all of her supplies. Her weight gain has been fabulous. Her height has been steady, but in the 2nd percentile.
Fidelity’s muscle tone has increased dramatically. It is fun to watch the physical therapist come and work with her. It seems like every week she is starting a new skill. Her head control really improved when she was about 4 months old, which allowed us to put her in the sitting position. That has been huge! The sitting position improves her core strength and social skills. We put her in a high chair and she can watch us throughout the day. She can even roll from her back to her front completely independently, and can sometimes roll from her back to front. She grabs toys and transfers them from one hand to the other. She is hitting milestones slower than average, but we are seeing her work and grow.
She got approved for growth hormone injections. Everyone has advised that we do this as soon as possible. This is prescribed for height, but will also improve her muscle tone. We got caught in a bit of a red tape. Her doctor was totally on board, and the insurance approved it. She was approved on October 16th, after many phone calls, she got her first injection Dec 22nd. Now, she gets a little shot each night before bed. We have seen subtle improvements in her energy level. The older girls and I take turns giving it to her. For some reason the girls love to do this. Maybe we will have a few healthcare professionals in our future!
We are keeping a close eye on her head shape. All of that time without head control meant a lot of time laying on her back. She started out with a pretty strong preference to look to her left, which resulted in a mild flat spot on that side. We may have the option of using a orthopedic helmet to correct it. We will follow up in February, when we return from our Florida tour.
Her low muscle tone may affect her milestones in other areas as well. Many PWS kids get glasses or have eye surgery for “lazy eye.” Several need braces on their feet until they can build up enough muscle to support weight properly. Fidelity has many health care professionals watching out for her, so we will address those things as needed.
We describe Fidelity as “chill.” I say that she is the kind of baby that everybody wants. She does not cry much and she sleeps a lot of the time. At concerts, the grandmas and grandpas fight over who gets to cuddle her. We get comments about how calm and quiet she is. Other moms look at herald launch into stories about how their babies won’t sleep. I just point to the other kids and say, “She’s making up for her siblings.”
PS - I thought of one more big positive. Fidelity has made it this far into the winter without getting sick. We’ve been to family Thanksgiving and Christmas. She gets passed around at the concerts. Some of the other PWS moms have been back in NICU with RSV. Others have had terrible bouts of stomach bugs. Influenza A is going around like crazy here. Fidelity has been fine.
She does not have a suppressed immune system, but just a little bit of congestions really messes with her breathing- so we like to keep her well! This has been a big motivator to keeping her on breastmilk instead of formula. I hope that she is getting some really current antibodies, and makes it the rest of the winter without catching something.