Mind if I vent?

[dannlark]

So, if you've been following Ian's story we've been have a difficult time with CHLA getting his CT done. Like...endless...waiting....to...schedule...

So, we had the appnt. with his pediatrician and she said she was surprised that it hadn't happened yet and said she would hurry them along. Well...

I heard nothing from her yesterday so today I called at 11am and left a message with her reminding her about it AND requesting that instead of a regular CT it be a 3-D one. She called me back and said she spoke with radiology and they would be calling, but that she had to trust the NS (the one we don't like) about the non 3-D CT as the regular one, she claimed, shows all they need to know. Anywho....

So radiology calls and guess what? We are so BLESSED to get the next available appnt. on...drum roll please.... JULY 1st!!!!!!!!!!!!! Aren't we just the luckiest folks in the land???? Wow, I get to wait a month to just MAKE an appnt. and then get to wait another month to actually GET an appnt.!!! Anywho...

So, being the squeaky wheel that I have become... I call the 2nd opinion/consultation NS's office that we have Ian scheduled to me with on the 17th and ask if there is any way that the Dr. could order a CT for Ian before we meet with him. But unfortunately since he's not yet an official patient they couldn't help with that. BUT, they did have an earlier appnt. now available!!!! on the 10th!!! NEXT TUES.!!!! And he could then schedule a CT there at Cedars-Sinai if he felt it was needed and it would probably happen BEFORE the STINKIN 1st of July!!!! Wow...

If that isn't an advertisement for being the squeaky wheel, then I don't know what is????? I just had to share the frustration and jubilation that I went through all in about 4 hours!!

I'm exhausted...

*Larkin

[mckennasmum]

so that's good and bad news then at the same time!!! I can't believe it takes that long to get a CT scan done, what a load of crap!!!!!!!!!!! Are they that booked out or is it just red tape. It is so mentally exhausting though, but good for you for sticking to it. So maybe by July 1st you'll know a lot more! As I think I said before, we had to have the ct scan done before the NS would look at McKenna!

Hang in there

[Tawnia]

Hope all this is worth it! What a day of highs and lows!

[marisajo]

Awesome that you can get in next week! Sometimes they can tell just by examining the child, so even witout the CT scan, I think you'll have at least a decent idea on Tuesday of whether you'll be heading down this road. Will keep my fingers crossed for you that the day goes smoothly and you get all you questions answered finally!

[Alison]

thats great you have found someone else who can get thing happening sooner, and im glad you now dont have to wait as long!

[mattricia]

Oh Larkin, i know the waiting can make you truly think you're going mad, especially when it doesn't have to be that way!!! We waited THREE months to see our neurologist and he scheduled us THE NEXT DAY for our CT scan. Unbelievable, right? The nurse at our ped made the appt. and i figured with a wait like that, there couldn't be anything serious to worry about. Ha.

It took me a long time to get over my bitterness about that three month wait. I just wish i'd had even an inkling that i needed to advocate for Jack before. We never even heard the word "craniosynostosis" until that appt!

Enough about that...i'm sooo happy for you that things are finally moving for you. The ball is rolling now...just a few more days!

[beccad]

Way to go girl! I hope you find out soon. The waiting truly is the worst part.

[Monica]

Our NS highly recommended the surgery without the scan, but once he saw it, he said we pretty much HAD to do it. It only took us about 10 days to get in, though that was long enough. The NS made our appt with the PS - he even said it would take months to get in if we did it ourselves. Hang in there!!!

[three.little.boys]

Keep fighting Larkin!!! Go Girl GO!!!

Two things....thell the stinkin' pedi that....yes..the NS says regular CT scan...but OVER 20+ of us (who happened to HAVE the surgery on our own kids) say ONLY 3D CAT! We have all been down this road before...just trying to save you (and darn pedi!) some legwork up front!

Also, not that it matters, but the first CFS we saw here in KC (crazy man...remember me telling you 'bout him?) ordered a 3D CT Scan BEFORE we had our appointment or even met him! We were SO lucky to get the CT Scan the SAME day as the appt!! Whew...only now do I realize how we lucked out!!!

Any news from Fearon yet??

[Wyatt's Mom]

Good job Larkin. Keep fighting for your child. You are doing great. Keep us posted!