Because my brain is very tired, I'm going to do this post a bit differently. I am leaving out all manner of medical gobbledygook, because it all boils down to the running theme of "We don't really know what it going on." and I don't have the energy to type out all the various Theories of Could-Be.
The appointment went wonderfully. I walked away with good information and a greater understanding of her mutation and what it might and might not mean, also I have learned a few more Theories of Could-Be. The geneticist believes that her mutation is inconsequential. He said that while it is not within the range of what can be considered normal, it is not affecting the amino acids, which means it should be benign. He wants Josh and I to be tested for the mutation, just to rule it out definitively as a cause. He wants to run further tests, but I'll get to that later.
Again, the appointment went well, much better than the previous visit. He sent us for x-rays of her colon, which extended our day a bit. We got the results today. No structural abnormalities, but it was quite full. We'll up her Miralax for a couple days to try and move it all along in a timely manner. No Theories of Could-Be...just lots of poo.
Once again, it went very well. Now that KayTar is no longer terrified of doctors, our appointments go much smoother. We discussed quite a few things (more Theories of Could-Be) and it was informative and reassuring. We scheduled a 48 hour EEG for October 10th. That was the soonest WITH string pulling. The first available was not until February 2008. The nurse said they have frequent cancellations, so they will call if a slot opens earlier than October. The EEG will be 48 hours, unless they do not capture anything in that window, in which case it will be extended for up to a week, I believe. If we have enough advanced notice, we will take her out of town right before the hospital stay, to possibly prime her for a big event. I know it sounds awful, but it is the only possible trigger we know of, and we'd really like to map one of these episodes. While she is inpatient, they will do an LP. The geneticist and neurologist are coordinating their efforts to determine what other tests should be run while she is already in the hospital, so I'm not entirely sure what else will be in the works.
We were at the hospital from 9 am to a bit past 5 yesterday, with a brief jaunt to the Children's Museum thrown in for good measure. I felt like I had been placed beaten with reeds when I laid down for bed last night. My whole body ached. I went to bed at midnight, per the usual, and woke at 6:30 to get ready for our morning appointment. I am not a morning person. Really, really not. I'm generally up by 8 in the morning...but 6:30 is a stretch for me. I am wiped out.
KayTar was amazingly well-behaved. She cried only once all day. We were driving back from the museum and she could not reach her bottle and she cried for it. Those was the only tears she shed all day, even though she missed her nap. There was no fussing when the nurses or doctors looked at her, she was compliant in every way. The doctor did not even need a tongue depressor because she opened so widely for him of her own volition. She did not even struggle when her blood pressure was taken or while being held still for the x-rays. She understood that the big camera was taking a picture of her belly button, and she kept saying "Cheese! Bai button! Cheese!" She was really better than I could have imagined. Poor thing was so tired that she fell asleep by the time we left the parking garage on our way home.
The next few are on the amazing slide on the GI floor in the hospital.
Yeah. Totally lied. This is definitely not short and sweet, but I'm too tired to change the title.
I know you are exhausted... but "Cheese, bai button?" kills me. What a sweet girl!
Wow! She looks like such a big girl. And it must be so much nicer now that she's not terrified of doctors. It sounds like you have a great team.
Wow, what an adventure! I hope all of this effort turns out to be well worth it. And I hope you get to catch up on your sleep soon.
She looks so grown-up all of a sudden. Yesterday sounds like it sucked.
Hey, a few years back, a certain member of my family who I will not name for privacy reasons but who is male had to get an x-ray and all the x-ray showed was that he was COMPLETELY. FULL. OF. POOP. Ick!
Thanks for the update. M and I look at KayTar's picture and she says, "No Baby." meaning that KayTar is NOT a baby.
Have you noticed a difference in the Miralax since it's been OTC? My pediatrician assured us that it's exactly the same, but I'm just not so sure. Although if M doesn't have it for a day or two, Wooo-weee...watch out.
KayTar is looking might grown up lately.
She's such a sweetheart, Kyla. Really.
I'm glad you got more information and made it through. Those long waits...it is too bad. Man I felt fatigued just thinking about your day...that was long. I hope you get some rest and fun this weekend. Thanks for updating. I was hoping to find this here. And KUDOS to KayTar for making it through all this too!
What a long day, friend. Glad to hear it was mostly good.
ahh, who cares if you lied I like to hear all the details!
Oh what a dreadfully long day. Thank heavens Kay-Tar is the living doll she is, taking it all in stride.
Wow, even the shortened version made me feel exhausted on your behalf. The whole LP thing makes a shiver go down my spine (no pun intended.) All these tests are so tough on her, yet she looks like she's taking it all in stride. I know the LP/EEG appointment will be difficult, but I hope it yields some answers.
you must be exhausted. i hope you get the info you need...and you know, she looks so grown up...so much. because she is. wow.
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