just life. Day in day out everyday normal life. Hallelujah.
I feel like there’s so much to catch up on that i’ll never get caught up.
So i’ll try to sum it up.
Last week was a mixture of emotions. Tuesday I heard from the nurse up at milwaukee that one of kendall’s organic acids was elevated on the repeat test we did with this last round of bloodwork. It was elevated in February, which everyone chalked up to her being so very ill at that time. Now its elevated again (not ridiculously so but its apparently the kind of thing that shouldn’t be up at all, so even slight elevations mean something). This is actually exciting news because if the docs agree that this is a meaningful finding, it COULD lead us to a very large piece of the Kendall puzzle. It would mean a lifetime of watching her diet like a hawk to avoid certain things that would upset her metabolic balance – but with some injections of B12 – she should start to stabilize and normalize. Now of course, that is all courtesy of Dr. Terra, degree received via Google – but it was enough to get me very excited last week upon hearing the news that her bloodwork was abnormal! That was the ONLY result I was able to get from the nurse over the phone – she was going to have the doctor review the rest of it and get back to us with recommendations.
Before that could happen though, she started having a VERY freaky episode tuesday nite. Basically her lower GI tract had shut completely down, and she was just SCREAMING in pain. I will spare you the gory details but her poor little legs were just scratched up because all she could do was pull her legs up and just yank and scratch at them with her hands. We were all crying along with her because it was just so bad to hear her. If i had had anyone i could call at midnite to come be with the other three, I would have had her at the ER i was THAT freaked out by how bad she was. In looking up possible causes for her myriad symptoms that nite, it seems like she was possibly dealing with a very serious bowel condition that should have had emergency care – but thank God He had his hand on her, and by the next morning she seemed to have cleared the blockage and began to recover.
in order to be closer to her doctors though, we drove up north to spend the nite at Ben’s hotel, knowing that we did have to go in for testing the next day (already scheduled). It was a fun “stay-cation” for the girls with a huge hotel room and a nice pool and a great breakfast the next morning. i am glad they got a little get away. i of course was still freaked out by kendall’s issues so i didn’t sleep a wink, but that’s par for the course.
the testing the next day was quite interesting. It involved kendall getting tucked into a plastic bubble (yes just like the boy in the movie). i held her still while a nurse adjusted the levels of air going into the bubble and read the computer printout of what was happening in the bubble. Basically, the test told us that AT REST – just laying there half asleep, her body burns up 161% MORE calories than other babies her age/height/weight. This test measures how much carbon dioxide she is breathing off, so we know that somehow her pulmonary function comes into play here – but Other than getting the result number, I got no other info.
Again – the doc is supposed to get back to us. We’re waiting on a few more tests I guess, and still waiting on the elusive call back to give us direction or answers or next steps. Semi-frustrating, but for as good as she’s doing right now, it’s ok. If she was having more issues, i’d be pushing harder. But for now she’s great, so i’m ok with another week or two of waiting. We go back up to milwaukee in September (9/9/09 to be exact!) – and we have no idea when we go back to neurology. this thursday is her 9 month well baby check up (maybe she’ll actually be healthy for once!), and immediately following that, we go to the hospital for her ABR (brain stem) hearing test to see WHY she failed the OAE (outward hearing) tests last month. Hopefully its just cause they were all random flukes and she actually hears just fine – she’s just extremely delayed from a speech standpoint. Second best scenario is that she has some loss, but it seems to be all fluid/conduction. that would mean that she’d probably need tubes soon (as did her two older sisters) – but that that would solve the problem. Worst case – she did sustain nerve damage during her NICU stay with the antibiotics she was on. BUT – its all a guessing game at this point. So no point getting worried about it yet.
i need to do a school post but my contacts are sticking to my eyelids so i’ll have to do it later.