Happy December! I can’t believe it’s already December. This year has gone by so fast! Although I probably say that every year..
We’ve been so busy recently between various doctor appointments & therapies & Thanksgiving! And to top it all off, Madison wound up developing her very first cold. We really lucked out last year with her not getting sick at all. Last winter she was on a steroid seizure medication that pretty much wipes your immune system, so we never took her out, like ever. We had no one over. And the few people that were allowed had to wear gloves and masks. I guess all of those precautions worked, because even with a low immune system she never got sick! This year however, we haven’t been as lucky.
The Sunday before Thanksgiving she woke up pretty congested and coughing. She had a low fever, which was actually a surprise to us because with her pan-hypopituitarism she tends to go hypothermic when ill and rarely gets a fever. Now a cold may not seem like that big of deal to most parents with a toddler. (Can’t believe I just used the word toddler!) But for Madison, a cold could be serious or deadly. So naturally I was on high alert, checking her heart rate, temp, and o2 nonstop. I was convinced we would wind up in the hospital and that’s the last thing I wanted to do the week of Thanksgiving (and my birthday!).
All of her vitals remained stable, but the congestion was pretty bad and it made me nervous for her breathing. If she simply has a virus, there is really nothing the hospital can do, but if her o2 saturation starts to decrease she could potentially need oxygen, like she did when she had bronchiolitis back in September. Monday I took her to the pediatrician just to make sure it wasn’t anything more serious. She was negative for strept and the flu, and since her lungs sounded clear we decided to just keep doing everything I was already doing at home; steam showers & saline to try and diminish the mucus.
The week went by, including Thanksgiving, and although she was still pretty congested, she otherwise seemed to be in great spirits! I should mention that since our EEG fiasco, she hasn’t had a seizure. Now sometimes she still has some weird eye movements, so it’s possible something is still going on, but since upping her one med, she hasn’t had her normal cluster of spasms in almost 3 weeks! (This is pretty incredible, but we don’t want to get our hopes up too high because she has had a good stint before and then sadly her seizures returned). I will say it’s been incredibly nice to see her wake up without a spasm though. And on her active days, she seems really, really good. We truly see a difference in her when she’s having spasms vs. when she isn’t. It’s remarkable and gives us a lot of hope about her potential IF we can keep her seizure free. (Prayers please!)
So after an awesome Thanksgiving weekend, where she was super awake and vocal and happy, we had an off week last week where she slept A LOT. More than usual for her since lately she has been a bit better with her active days. Her ABM therapist said that perhaps when she has a few good active days in a row, she might need some rest days for her brain to really take in all of the new connections it made. Maybe that’s true. Maybe it isn’t. Either way, I was looking forward to having her bright eyed at all of her appointments last week, and sadly that didn’t happen. She was also still experiencing some congestion, but that was getting better too. When she had bronchiolitis we were in the hospital for 11 days, so I assumed it would be a similar timeframe to get over this cold too.
Then in true Madison fashion the weekend rolled around and she was back to being her cute, vocal, awake & active new self. I swear this girl lives for the weekends like the rest of us, and I think just chooses not to participate in her appointments during the week lol. Friday night though she started spitting up mucus quite a bit. I actually got nervous she might be getting sick again because she never throws up, but nope. Since she can’t really cough up phlegm like we would, I think the only way she could finally get up the last of it was actually throwing it up. So although we were up literally the entire night with her, she was peachy keen and congestion free by Saturday morning!
We had an awesome weekend together for the second time in a row and I think we’re officially over this cold too! The best part is that we were able to get through it at home! We did have to stress, or half stress I should say, her hydrocortisone to help offset her feeling unwell. If you haven’t read my posts on her Endocrin issues, essentially Madison doesn’t make enough hydrocortisone which is the body’s stress hormone. When we get sick our body produces more hydrocortisone, but because Madison is deficient we need to increase her normal daily dose to keep up with her body being under stress. We’re getting pretty good at reading her and knowing when she needs a full stress dose vs. just a little extra and she seemed to do well at home with our adjustments!
I’m hoping her weekend vibes continue throughout the week this week, but I can never be sure with my girl! We’ve got a lot of appointments, therapy, bloodwork, and a special Christmas play date this week, so hopefully she cooperates! It’s also Infantile Spasms Awareness Week, so follow me on Facebook and Instagram where I’ll be sharing some info on this rare, subtle, and devastating form of epilepsy Madison and so many other innocent children suffer from. Read more about IS here.
Have a great week everyone!
Xo,
Kelly
