It has been a hot summer. Today was just ENERGY-ZAPPINGLY hot. And i wasn’t even out in it for that long! But we were inside most of the morning, went out to take Kendall to therapy and then stayed outside to let the girls play at the park while Kendall was in therapy. And all morning long I had PLENTY of energy – in the air-con, with lots of cold water being consumed.

Come home from the park and I am just DONE. Everything hurts, everything is too loud, everything is just too much to handle and I feel like I could sleep for hours. So maybe we will limit playtime at the park next time its a heat index of like four thousand degrees.

But at least i got a lot done this morning – ENT appts set up for K2 and K3 who are both having random flare-ups of old issues, school registration questions answered, new therapists set up into the schedule, some minor housekeeping, and a headstart on the paperwork for our lifeline flight to pittsburgh. Hopefully. I guess it all depends on whether this paperwork goes through! And now that I have probably thoroughly confused most of you with this last paragraph of random issues, let me break it down for ya a little more.

K2 ENT Issues: If you have had opportunity to hear her speak in real life lately, you may or may not have been able to actually understand her! When even Ben says she’s gotten bad, i know she’s gotten bad again. I am hoping she doesn’t have a lot of fluid built up behind her ears again, but then again, I do hope its just fluid and that its an easy fix! However, because of her increasing daytime tiredness and a noticeable increase in her snoring at night, Dr. Natalie thinks the ENT needs to weigh in on whether we need a sleep study run on Karissa to evaluate how much sleep apnea is affecting her, and if she may therefore need her tonsils and/or adenoids removed. He (ENT) was ready to do this surgery 3 years ago to help her ear issues/speech issues at that time, but we agreed to wait. I am hoping that there is something else we can try in the meantime, but I am mildly concerned about the fact that she is becoming more unintelligible as we head into a new school year. Also – she is still falling asleep in the middle of the day now – how is that going to work when she is in full day 1st grade? She would fall asleep on the bus last year after 2.5 hours of kindergarten – ON THE BUS!!! with 50 other wild rambunctious kids yelling all around her!!! On a ten minute drive home! I mean, I know the bus can get warm, and I know school is tiring, but she seems to be getting MORE tired as the weeks go by here. I will feel better at least getting Dr. K’s opinion. Sleeping in the same room as all the girls last week when we were in the Dells was eye-opening (or ear-opening rather) in that I could hear just how much and how loud she is snoring! Poor girl!

I was also able to hear K3’s issues loud and clear which are similar, but unrelated. Kaylen’s ear tubes worked their way out last summer after a year in place. She hasn’t had any bad ear infections since they were placed, except for when the first tube was starting to come out. She eventually had that tube removed in the ENT office with the special little clipper tweezer thingies because it was lodged at an awkward angle and was bugging her. The second tube did something similar and bugged her off and on all through this past fall/winter/spring. She has finally stopped complaining about it, but the tube is still just sitting right in front of the ear drum and is visible with the otoscope. Now, whether this tube is contributing to everything else is probably unlikely, but it is a possibility. either way, I think its time to have this one removed too. On top of that, it seems like her reflux is back in a bad way. Every single morning at the Dells I woke up to her hacking up a lung at 5:30. and I mean HACKING. If you’ve heard me get into a good coughing fit, mine don’t even hold a candle to how K3 sounds in the morning.  If you’ve ever had a refluxer, you know that noise, that lurchy sound that precedes the coughing. She coughs for about an hour then finally gets up and deals with a super raspy voice for about half an hour, then asks for one of her medicines, then goes about her day. Dr. Natalie had put her on zantac again as a trial, but there is some stupid problem with the pharmacy and our insurance so I have not gone to pick that up yet, and have just been doing pepcid chewables with a tums for her.  She says it helps her “frow up” feel better. She talks about throwing up a lot – which she did have two episodes of seemingly random and unconnected week-long vomiting sprees this past spring – but I think she is referring to her reflux as throw up. I am sure it kind of feels/tastes/seems the same to her. Either way – the ENT also thought she was still dealing with reflux last year at her check up, but we opted to not do anything at that time and just hope it went away. Clearly we need a better plan B. So we’ll see what his thoughts are on that. I am not sure there is much to be done for it – but I do hope that she isn’t just ripping her throat up with all the acid, so at least I hope to get that under control.

Pittsburgh trip/free flights – We have an appointment scheduled with Dr. Goldstein, a “mito expert” at the Pittsburgh Children’s Hospital. We were encouraged to see her by a few of kendall’s other specialists and therapists, and after a few months of records consults and waiting for appointment slots to open up, we scheduled this appointment last month. Now the problem is transportation! Kendall does NOT do well in car rides. She handled the 3 hour trip to the Dells ok, but we were pretty vigilant about doing chest PT/nebs/o2 as soon as we were at our destination – both going and coming. The drive to Pittsburgh might be too long and do her in for a few weeks again. Plus it will cost us about $400 in gas/food/lodging. Which leaves flying. And tickets are going to be about $400 anyways. On top of which, we cannot bring oxygen with us in a commercial flight, and getting her feeding stuff (liquid formula) through security could prove to be a nightmare of large proportions. All for a two hour appointment. Which leaves us with a medical mercy flight. Which is what I am trying to coordinate. All i can say is – pray that they accept us, pray they have a pilot available next week, and pray that it all works out. If i can’t get this coordinated, I will have to cancel this appointment. And while that would be ultimately ok – kendall isn’t in a crisis right now or anything – it will still bug me to not have any kind of real help/answers/direction about what is going on with her.

So that’s what i did today.

And now I am just chillaxin’, rocking a major sinus headache and some seriously messed up contacts. I think I might just try to get in bed early and hope that tomorrow we can all stay in the air conditioning all day long! Kendall went to bed with an elevated HR (heart rate), a slight fever, a hugely distended belly that is having a tough time draining/venting, and some nasty painful looking rashes on her booty. Hope that our nursing waiver comes through SOON because nites like this are where I lose my mind! It could be nothing, it could be her body’s reaction to the tiredness of last week’s festivities on vacation, it could be that her cold is turning into something more.  either way, its going to be a long, not-so-fun nite of checking on her.

Hope you are all having beautiful days! And really – i know this is full of a lot of complaining and whining, and I am sorry for that – but overall I am so happy and so blessed and so glad for all the GREAT GOOD THINGS that are in our lives.

Thanks for listening to the whinefest. Tomorrow I’ll be perkier.

love-n-hugs –


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  1. Just so you know, we’re flying United with MAW in October, and they said we can bring O2 on board! Not that it helps with the cost… =( I hope something comes through to help you guys out!

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