Who woulda thought summer would find us here in the middle of September?!?!? I thank God we have gotten a few nice days – days to remind us why we love summer, to hold on to the time we have to run around in shorts and t-shirts, to enjoy that beautiful balmy breeze, to soak up as much warm sun as we can before the cooler days of autumn set in for real. Not that I have done anything amazing or newsworthy with any of them – but, you know, the thought is there. (surely that counts for something, right?)
I don’t even know for sure what I have or have not updated on from the aftermath of my uberlongsuperinformativemedicallyoverloaded post from last week after our Milwaukee visits. Basically – we do’nt know much more info than that. We did find out that her muscle biopsy results are definitely inconclusive. They did not send it for further testing in order to rule in or rule out the mitochondrial disease diagnosis, and do not feel that sending her remaining sample would yield much different results. I wanted to throw a kaylen sized fit over this when i first found out the news. I mean, why would God have allowed us to put her through that – why would He have asked her to endure all of that, to live with that scar – all for no reason? But I can’t think like that. I have to keep hoping that there IS a reason for it. That somehow, in all the craziness of that, there is a plan and a purpose that is greater than myself, greater than all of this heartache and wondering. So, knocked down, but onward we press.
She is having a pretty good week. She is able to “sit” with a lot of support and pillows around to catch her inevitable fall. And oh, she is so proud of herself when she does it – feels like such a big girl, gets the hugest grin on her face, starts her little bouncy dance and DOWN she goes! But she’s workin’ on it! She’ll get there soon! We have her 6 month evaluation for therapy coming up in two weeks – it will be interesting to see how much she’s caught up. In so many ways, she does look great, and healthy, and right on track – for a 4 month old. But she’s not 4 months. she’s ten months. And she has had to fight and struggle for each and every skill she has gained. She’s amazing.
In other family news – we got Kaylen to the ENT to remove the mysterious blue thing – it did end up being her tympanostomy tube. The other tube looks like its also pushing its way out of her eardrum. Her cough and raspy voice were more concerning to Dr. K, and he put her on antibiotics and steroids for ten days in the hopes that it might be “just croup”. If it turns out to be resistant to the meds, he will need to dig further into continued reflux (which she had horrifically as a baby) as a culprit, saying it could be nodules forming on her vocal cords. Awesome.
So i am trying to not overanalyze her reaction to the abx and ‘roids and WILL her to be responding to them. I hope it is just croup, and easily fixable croup at that. She does really seem to be coughing less, and i THINK sounding a little less hoarse. We go back in a couple weeks to see how that is doing, and come up with a game plan for seeing if we need to go back in and place tubes again. Maybe we can get a two-fer deal since we get kendall’s hearing re-checked this week and if they do find conduction loss, she’ll get referred for tubes also. Our insurance company hates us I am sure, and is probably cursing that decision from a few years back to deny the claim for birth control. I am waiting for the letter in the mail BEGGING me to find something to stop the procreation from occurring again.
I survived our big kickoff weekend for kids’ ministry at church this weekend also. Not sure what brought it on, but I ended up with another fibromyalgia flareup afterwards. I think the combo of emotional stress and the physical stress of running around the building in not the world’s most sensible shoes all combined for a nice crash. Luckily after a good nite’s sleep, i woke up monday morning not too worse for the wear. Good thing too since Ben left early monday for seattle for the week. the thought of that, typing it out loud, makes me tired. I have lived almost halfway through it, and still i can’t even think about it without cringing! But we’ll survive. Some nites it doesn’t feel like it, but then we make it through the craziness, the storm of chaos, and come out calmer on the other side.
I am rambling….i should be asleep. Ok updates for those who ask/care –
We have Kendall’s rescheduled ABR test for Thursday morning. Please pray that the doctor actually manages to make it in to work this time, and that kendall is her typical calm happy self for this test so that we CAN get a good solid answer and don’t have to do it over again, and sedate her for it.
Kendall’s GI called in a new “prescription” to our home health care company to have some “Farrell bags” delivered with our next shipment. Kendall has been having a lot more stomach discomfort more often than she previously had. Maybe this is her body working out the last of the food/allergens, maybe she is trying to fight off another GI bug, maybe her body is just actually trying to FIGHT the croup infection that is bugging kaylen. But in essence she is starting to back up more bile, which builds pressure up in her tummy, and she needs lots more “venting” (hooking her up to her extension tube, putting a large syringe on it, and squeezing air and pressure out of her tummy). When lots of bile backs up and vents out, we typically have to catch it all in something and replace it back into her so that she doesn’t lose all those electrolytes and fluids. yes, it really is as gross in real life as it sounds writing it down. So anyways, the farrell bags will allow us to be able to hook her up to the bag versus having to hold the extension ourselves and risk spilling stomach contents all over the counter/ourselves/the car, whathaveyou. i am hopeful that this will allow us to help ease some of her discomfort, and possibly help her become more regular with her bowel movements. She FINALLY today had one, after 6 days of laxatives and stool softeners. SIX DAYS. For a kid who eats only elemental formula. Same thing, same schedule. tonite she was definitely in a lot more pain than i’ve seen her in in a while, and i hope it doesn’t signal another fun round of shutdown in her gut. But i’ll try to remain positive.
Ummmm. what else. We were supposed to get kendall’s catch up vaccines started on thursday (and go back roughly every two weeks through December to try to catch her up), but since immunology put the quash on that till we get her bloodwork back, i need to call and cancel that fun appointment.
I guess thats really all that i have for today.
hope you all enjoy this beautiful weather – and that wherever you are, you are having beautiful weather to enjoy!