I went to an IEP workshop last night! WOW! SO great!! Here are some of the GREAT things I learned:
~I am VERY lucky to live in Murray School District. They have a fabulous Special Ed program, for Nick and Jack.
~I'm going to make up a "profile" of sorts, for Nick, to give to all his teachers. It will list his strengths, and the things he needs help with, and will have his picture on it. When I get it all typed up, let me know if you want to see it, and I'll send you a copy!
~IEP goals, are suggestions, and I am in charge! If I don't like something, I need to speak up!
~You too, can go to this workshop, and you should if you have an IEP. And live in Utah. :) Here is where to get info!
Here are somethings I learned, when I should have been in bed:
~Trampoline accidents ALWAYS happens when I'm trying to do something for one specific child.
~Emma CAN be convinced that I know best.
~Iceberg, closes at 11:00 pm. In the summer. So stupid.
~When you pull into the parking lot of PCMC's ER, and there is one space, you're not going to get in and out.
~Parents, in the ER in middle of the night, are tired, and stressed. And kids are sleepy.
~I should think about WHAT is on the floor that I just slipped on, and fell down, in front of the entire ER waiting room, before I clean it up.
~My butt WILL fall asleep with Emma asleep on my lap, for and hour and a half.
~Wake up Emma- more than we did, BEFORE starting the procedure.
~ALWAYS, ask questions, and be nice to the staff. They are nicer to you!!
~Babies in respiratory distress, stress me out. The baby behind the curtain from us couldn't breath. ugh... makes me sad, and feel yucky. I can't breathe either.
~Watching a little girl come in on an ambulance, is yucky. And when it's 2 am, it's worse.
~The freeway to my house, from the hospital, is COMPLETELY empty, at 3 am. The entire 11 mile stretch home, I was the only one on the road. And, it looks completely different.
~Emma looks like Frankenstein!...
6 comments:
Oh my gosh what happened? How many stitches. You should really starting earning frequent flyer miles at PCMC. Wouldn't that be cool. Then you could go on a trip with all of them :)
my goodness! I know I said I wouldn't check 44 times a day (lol) but I just read some of the posts from when your daughter had her surgery. I am a wreck just from the tests, you're amazingly strong! I really didn't expect recovering from surgery to be so hard. I SOO don't know what to do now.
Even though the nuclear scan takes longer than the vcug, I still hate the vcug more. That one is just so much more *personal*. At least with the nuclear scan there is no catheter.
We actually don't have a children's hospital here. They're still in the middle of fundraising for one. We do have a ped nephrologist here finally which is great. We didn't have one when my middle son was going through everything.
Ugg, this is supposed to be a comment, not a novel. Sorry to ramble on!!
I'm not that strong. I have just enought to get me throught the moment, then I crash.
And ya know...she is great now!
I am intrigued about how the cystogram doesn't use a cath! I hope so. I'm thinking of getting her a Valium or something! Her last VCUG was a NIGHTMARE!
Do you have Yahoo instant messenger by chance? My id is mickparkemmamom, is you do. Invite me, and we can chat in REAL time, sometime!
I generally don't IM, I rarely have more than 3 minutes to sit and do one thing. The renal function study is different than the VCUG. The VCUG can find the grade of reflux and if there are blockages but the renal function study checks to see exactly how much each kidney is contributing to overall kidney function. It's done in the nuclear medicine part of the hospital and they use a different machine than the VCUG. The radioisotope is injected into a vein rather than the contrast they put into the bladder with the VCUG.
In Cooper's case, his left kidney is only contributing 15% to overall function and the right is doing 85% of the work.
Oh My Heck!!!!
For Pete sake, when are you going to catch a break.
I've done the 3 am thing too, uggg
And the respitory distress double uggg.
Hope Emma's head gets back to it's usual cute self soon.
Sarah
When that baby was beside us...I thought of Wes...it made it worse, for me. And the parents, since the baby was so bad, they had to register in the room. They spoke spanish and needed a translator. They asked when mom and dads bday was. Dad was born in 1984, and mom in 1991!!!!!!!!!!!!!! OH MY HELL!!! I wonder if they called social services...The baby was about 8 months old!
And Emma is fine. We'll see how taking them out goes! My doc is doing it on Fri.
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