Hey, blog. It’s been a while. Sorry I’ve been neglecting you. Writing words is usually my stress reliever, and it still is sometimes. There are about 5 blog posts sitting, waiting to be edited, re-worded to sound less pathetic and less like I’m drowning in a sea of worry. One of these days I’ll finish them.


Rae had an immunology follow up today. It was mostly good news. Most her labs came back normal. Her body is making enough antibodies, which was our initial big worry. However, her shots have not fully taken the way they should have. Though she’s had her vaccinations, her body didn’t take those shots and turn it into antibodies to fight those specific illnesses. So basically she has to get a booster shot and then be retested to make sure the vaccinations have actually taken and are working correctly. (Read: draw her millionth vile of lab work)

Secondly, they’re going to continue testing how her antibodies are responding to infections. Even though her body makes enough, it looks like they aren’t actually doing what they need to do. They’re going to continue further testing to find out if this is the case (Read: even more labs)

Another issue we’ve been dealing with is Rae’s random fevers. Every few weeks she’ll spike a fever, anywhere between 101-104+. They almost never go down with motrin or tylenol or ibpurofen or anything. I usually rush her into the pediatrician thinking its an ear infection or strep or something and they find nothing. Then the fevers go away only to come back 2-3 weeks later. I write everything down, but I’ve yet to see a pattern with it. It’s not specifically every 2 weeks, or 3 weeks, or every month or anything. Her immunologist said this can be two things, possibly Junior Rheumatoid Arthritis or Periodic Fever Syndrome (which is literally exactly what it sounds like….periodic fevers, though they’re usually very specifically patterned, he said). So they’re going to be testing her inflammation levels to check for JRA and see if they can find any abnormal cell counts on a CBC that would indicate PFS. (So basically he told me, “let’s just take half your daughters blood supply.”)

Of course to top all this off, Rae has to add some more drama to our day. When Big S got her out of bed this morning, she got up and when she started walking around her legs were just not right. She has always had a little hypertonia (tight muscles that make it hard to move) so when she runs her knees over bend and she tends to lose balance a lot. But this was like, she couldn’t walk straight at all, then we saw her left leg kind of give out from under her. This happened probably 3-4 times before she had to get in the car to go up to DC. Big S said she was probably just tired. But when we got to Children’s I felt her doing the same thing. She’d hold my hand and every few steps her left leg would just give out from under her. She was fine to stand or take 5-10 steps at a time, but anything more than that her leg would just collapse under her. Fortunately a nurse saw it too and commented to the doctor so I knew I wasn’t being crazy and seeing things. When we got home she was pretty much normal. Though she woke up SCREAMING about the bugs and the bees on her legs about 10 minutes after I put her down for nap. Which is really breaking my heart since she hasn’t mentioned that since the beginning of May and I thought her continuous gtube feeds had taken care of her neuropathy issues.


I’m not going to lie, it feels like a lot right now. It seems like once one thing stabilizes another issue pops up. This time last year we were only worried about her gi issues, weight, and some muscle weakness and regression. Now its neuropathy and immunology issues, and fevers and new all-day feeding tube schedules added to the mix. It’s very overwhelming and frustrating and difficult to be going day to day not having a FIRM, specific reason what’s causing it all. It’s hard not to be frustrated when people say “She’s doing so well right now!” with such good intentions when I see her stomach being pumped full of food all day long to sustain her. I see her leg muscles overworked and tired. I go through her pages and pages of lab work that show abnormalities and markers for mitochondrial disease. I mix her juice with twice the adult dose of miralax to help her GI tract do what it should do on its own. I have to watch her weight plummet after the smallest sniffle or runny nose. I hear her cry in pain again after I thought we had it all figured out and “fixed”. And I have to look at our calendar with appointments scheduled and circled week after week, month after month. It makes me put on my brave face to the world and say “Yeah she’s doing great!” while on early morning runs, on dimly lit sidewalks I cry out feeling such deep pain to see my baby go through so much in just her 2 years of life and know that there is so much more darkness that seems to be coming for her. This life of medical uncertainty is hard. The good days she has and especially the bad ones, it’s hard to say ‘it’s not so bad’ when it most certainly isn’t how I pictured things would be.



Vent over.

I feel a little better and can say “God’s got this” now.

Cast your cares on the Lord and He will sustain you; He will never let the righteous be shaken.

Psalm 55:22



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