Milwaukee

Well….

It went.

It wasn’t an overwhelmingly helpful appointment, and yet I feel like we are definitely headed in the right direction with this doctor. He wasn’t interested in rehashing a lot of ground that’s already been covered, and agrees with the direction our other docs have been leading us. Namely, narrowing down the reason for her poor nutrition.

Basically there are three main reasons for “failure to thrive"”:

  1. Not enough calories consumed
  2. Malabsorbing the calories that are consumed
  3. burning up more calories than are consumed

(Wouldn’t we all LOVE to have to deal with number 3????)

Anyways – we can clearly rule out reason #1. He, his nurse, and his dietician were all quite shocked at how much she takes in and still has no weight gain. (Or very poor weight gain we’ll say). As we have suspected for a while, she shows the most signs of malabsorption, so that’s where we are concentrating most of our efforts with a lot of bloodwork and stool tests. He definitely did not shy away from the fact that this COULD be a mitochondrial disorder still, and that it would certainly explain a lot of what goes on with her. BUT – he doesn’t want to leave any other stones unturned that might be more fixable, so onward we go. He was glad to learn we are following up with a geneticist tomorrow, and hopes that we can combine a lot of the testing to get us some answers quicker. i have honestly never been SO ecstatic to catch a stool sample as I was today. It’s seriously as if Kendall knows i am waiting for one. She usually just stops going altogether, or she starts in with pure diarrhea (isn’t it so gross how i discuss bodily fluids here?!?!?!) = but FINALLY FINALLY today I got a good catch. I am telling you – it was actually exciting. I think I need to get out more…

So – that’s that.

It wasn’t like we were dismissed, as I was worried about. And yet I think he kind of was missing some of the other things that are starting to bother me (her hypo/hyperglycemic indications, her inability to handle full feeds and her leaning towards dehydration altogether too often for my liking, things like that). Hopefully Dr. BK tomorrow will be more helpful on that front. I feel like I have been so worked up over today’s appointment that I don’t even know what to think about tomorrow’s. Or if i even can muster up anything to think.

The girls were apparently having WAYYY too  much fun with their cousins to be bothered with coming home with us – so they are still there. PROBABLY not even aware that we came home! they won’t even miss us till tomorrow! I will be driving back up there (or meeting my family halfway) to get them, and then take them to Memaw and Poppa’s house for a few days of fun and fishing! While I will miss them terribly, I am so glad that they are able to have such a fun time during this crazy week. It is almost like a little vacation for them, which they so much deserve. I am SO GLAD that Karissa’s cast got to come off so that she could run and swim and have fun with all of them. they’ve been through so much craziness this summer, so many therapy sessions and doctor appointments and driving here and driving there and being quiet for this phone call or that phone call. And for the most part they’ve been such troopers. I am so proud of them.  My beautiful strong baby girls.

So tonite we’ll just enjoy a hopefully quiet family dinner, just the four of us. And we’ll maybe get in bed a little early. And then we’ll get up and start it all over again, and see what tomorrow brings.

Thank you for the love, support, and prayers. It is so good to know we are not alone as we go through this gauntlet of specialists this week. As always – please feel free to ask me any questions if what i write doesn’t make a lot of sense. sometimes i feel disconnected when i am trying to document these lengthy appointments, and i am sure it shows in what i am trying to write.

have a wonderful wednesday evening!

 

terra

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Comments

  1. Keep the updates coming – I pray for you and Kendall et al. all the time. Keep your spirits up – you’re such a strong person. 🙂

  2. Praying for you, daddy-o and K4. Glad you’re surrounded by loved ones! Try and have some fun while you’re up there.We just spent 2.5 weeks in WI…made me SOOOO homesick! Keep on updating us…love you girl.

    lori

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