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Update on dd and alagille syndrome

DragnHeart posted 6/12/2020 17:03 PM

As I was driving home today from going out I was thinking it's been a while since dd had her bloodwork maybe should call the doctor.

Figures as I'm driving my phone rings.

Bloodwork came back.

Dd's liver function is normal. Yay. However they now want her to have an ultrasound.

So, since ds's bloodwork has been approved for testing she said to wait until his results are in (2 weeks or so) and then she wants to see dd ds and WH since he also has the genetic mutation.

Wanna cause wh to have an anxiety attack. Tell him that ONLY ONE PARENT IS ALLOWED IN WITH A CHILD OR CHILDREN FOR VISITS and that they want to see HIM!!! Poor guy is not impressed. I explained to the doctor that wh cannot drive there and that's why I always go. So I'm allowed to drive him but will have to remain outside of the hospital on confence call during the appointment. Fun fun.

I also have to send her photos of the twins as theres facial features with this syndrome that the older two have for sure. Without exposing the twins to a hospital visit the photo is the next best thing to determine if they want to test them as well.

Now I'm overjoyed that dd's liver is functioning nornally and yes I want her to get whatever other tests she needs to make sure this mutation isn't causing other issues...but today I'm just not impressed with knowing I have to drive the dreaded DVP...fellow Ontarians you know my pain! I drove an hour and a half one way today just to get a new pump for our pool and the gps had me fuming....

"At the round about continue straight".

Ya think she grasps the concept of going AROUND THE ROUND ABOUT?!?!?!? NOOOOOOOO!!! You have to go around to end up going straight again. She of course flipped out. Ugh! Lol.

I guess this will be a good test of wh anxiety meds. He hasn't been able to handle driving down there even as a passenger without having a major panic attack.

thebighurt posted 6/12/2020 21:54 PM

Yaayyy!! For normal liver function! I don't know what the "dreaded DVP" is but I get the dread of dealing with what you need to do. Sorry that wh will be so stressed by it and likely just add to your dread.

It's good that they will do what they can to evaluate the twins by photo first. Good to stay safe.

I've never had GPS tell me to go straight at a roundabout. Always say to take the second, third exit or whatever. Strange. Maybe you were supposed to drive through the center?

At least you will not have icy, snowy roads to deal with for the drive (hopefully ).

DragnHeart posted 6/13/2020 06:56 AM

I don't know what the "dreaded DVP" is but I get the dread of dealing with what you need to do. Sorry that wh will be so stressed by it and likely just add to your dread.

It's a highway leading into the city and its always jammed packed. And yes wh will be stressed and that makes me stress lol.

It's good that they will do what they can to evaluate the twins by photo first. Good to stay safe.

Yes! Hopefully the twins wont need further testing but if they do so be it. I'd rather get on top of this than not.

I've never had GPS tell me to go straight at a roundabout. Always say to take the second, third exit or whatever. Strange. Maybe you were supposed to drive through the center?

I dont experience round about very often so realizing I was coming up to one had me on edge. Add to that the GPS sounding off didn't help. Of course shes better than Yoda!!!

"Left house must bare, right turn you must make".

More times than not wh and I got lost listening to Yoda lol

At least you will not have icy, snowy roads to deal with for the drive (hopefully ).

Oh praise be to the gods for that one.

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