I absolutely hate it when Reagan gets sick or has a fever. She battled a low grade fever from Friday through the weekend with no other symptoms. One day she sneezed three times (I’d hardly call that a symptom) and one day her eyes were watery for about five minutes (what the heck is that?!).
Due to her metabolic disorder, she goes on sick day formula when things like this happen. It’s less protein and more calories…and more volume, four more ounces. So she has to tolerate 32 oz of formula before bedtime. I don’t even know if I have that much liquid every day (well…counting coffee I probably do). It just seems crazy to stuff my two year old full of formula, but whatever, it’s the protocol. We also cut her lysine from food that she eats by half, which is good since when you’re sick you don’t want to eat much. It’s a delicate balance, pumping her little body full of fluid, hoping she keeps it down and doesn’t get too sloshy and throw up…believe me, she gives us plenty of scares while sitting in her high chair, making sounds and faces as if to tell us she’s gonna do it. But she usually doesn’t unless she’s really sick, so I’m guessing it’s a behavior thing (how do we deal with that?)…
Anyway, beyond Reagan not feeling well and Rob and I walking around on pins and needles, while texting her geneticist about the day’s developments and wondering if this is serious enough to go to the hospital or if we can manage from home…it takes a ridiculous mental toll. If I were to explain it, it’s like the Devil is playing mind games with me.
For 33 years, Rob and I have gotten sick, been sick enough to be hospital admitted, watched friends get sick, their kids, etc. Never in all our years or experiences have we ever seen anyone loose skills and milestones, from a typical sickness. Except for Reagan…b/c of GA-1. And in the GA-1 community, it’s very common for one to get an illness and then be wheelchair bound for the rest of their life.
When we put Reagan to sleep at night, we thank God that she didn’t have a metabolic crisis or seizure and we praise him for all the skills she’s re-gained. And these past nights, we’ve thanked God for not letting Reagan loose any of those milestones, again. It’s a foreign thought to think any sickness can do this. It’s just that the way our bodies are designed to fight a sickness is not conducive to Reagan’s disorder. No one I know, except maybe the families I’ve met on Facebook through the GA-1 group, is worried about putting their child down to sleep, and then wondering if in the morning they will still be standing in the crib ready to start the day. When Reagan gets sick, I wonder if the bottom will fall out again. And it’s not just getting through the sickness, it’s getting through the following days and weeks.
If you remember, Reagan made it through her first illness (RSV). We came home from the hospital victorious. We all conquered our first sickness together, and were home for two days before she had a crisis. There was NO warning that she would collapse, no warning of a seizure. Reagan was healthy and actually given the all clear a few days before we were discharged from the hospital, she just needed to drink a bottle on her own…we worked on that for two days before leaving. The Dr. who made the rounds kept saying, “if she didn’t have GA-1, you’d have been home days ago, she’s not sick anymore.”
Everything we’ve ever known about getting sick, fighting sickness and rebounding from it are now useless when caring for our daughter. It’s a terrible mind game. I’m so glad Reagan has been (mostly) fever free since Monday. But this next week, when she’s playing…is she going to collapse and loose everything? I am constantly evaluating her…“is she not eating b/c she doesn’t feel like it b/c she’s sick, or is it b/c she’s loosing muscle tone and it’s hard to chew and swallow? Is it behavioral? She climbed up on the couch today for the first time ever, but she’s crawling a little differently, is that b/c she’s just not feeling strong or is something she’s fought so hard to regain fading away?”
I don’t know anyone else who has to think about these things when their child gets sick. And it plain stinks to be honest.
I’m writing this for you all to journey along with us. When Reagan is fever free, has overcome all the symptoms of being sick…we still worry. We still don’t feel out of the woods, we still pray, we still praise God for keeping her safe and pray for it to continue forever. For her to never have a metabolic crisis and for her to never loose her skills again. Every day she defies odds and that is a gift. And every day, we thank God for the gift that is Reagan. Please keep praying, even after her fevers and symptoms are gone…please pray that our minds can be at rest and can trust in God…b/c GA-1 is a mind game that seems to never end.
May 13th, 2015 at 8:19 am
Thank you for your post. My son Owen was diagnosed with GA-1 one week after he was born (July 22,2014). Your post rings so true in our family, we pray and continually trust in God, but the mind games are the worst. So thank you.
May 13th, 2015 at 8:47 am
Praying for you and your family.