doctors and nurses rant

[lolathechecker]

im so sick of the line "well, in normal babies..." my baby is NOT a freak of nature! shes just as normal as any other baby, just normal in a different way. aside from her spina bifida/hydrocephalus, shes perfectly healthy. every other organ is fine. they've checked them all twice now, so why is it that all the doctors and nurses go: "in normal babies we see this, but..." does that bother anyone else? the whole "not normal" title the doctors assign us? cause it's driving me crazy!

[Spokie]

They don't even realize how irritatingly aggravating that can be sometimes! I'm sure they mean well...

Ask them to replace "normal" in their sentences with "common, run-off-the-mill, boring" or "plain".

Why do we need to know what they 'see' in these so-called "normal" babies anyway? I want to know what they 'see' in MY baby. The local mechanic at the workshop won't tell you what he saw in somebody else's car engine - he'll tell you what he did to fix the problem on YOUR car.

;)

[Barb]

"typical" is just as bad ;)

Sorry, yeah, it comes with the territory and it sucks!

[wendypal]

I just thought I'd add my little vent too. We switched places in December to get a new pair of afo's for Sam. As of today, they are now making the 5th pair. All because they will not listen to me! I think I am so frustrated. The last 2 pairs were actually braces used for cp kids. The new guy today looked at the braces and said,"What are these people thinking ? They should never had made these braces for Sam!! Hello, that's what I have been saying all along. Anyway, a mother doesn't really know anything, does she? Well, yes we do. We are with these kids all the time. 24/7!! We should know what they need. Ugh!!
Thanks for letting me vent.
Wendy P

[mommy2cnj]

Sometimes, these doctors (and staff) tend to forget that although they may see your u/s or your child in a medical specialty situation, they STILL need to treat you/your situation as an individual. Unfortunately, this trend doesn't stop with medical professionals. It tends to follow you/your situation even further down the road (say school for example). For me, as time went on (being mommy of 12 & 9 yo's both having sb), I've learned that I can go into these situations and mention that although we have tremendous respect for you and your knowledge in our situation, we ask that you please remember that our case is an individual case and may not be the same as the next case. That usually tends to bring these pros back to the real world and help them realize on every visit thereafter, that your case truly is individualized, rather than looking at it generally, and they also tend to have more respect for you and your situation.

[Spokie]

Very true. They might know the terminology, the theories, etc... but you know your child(ren) much better than they do!

[mommy2cnj]

Hi, Wendy.

Just wanted to let you know that you're not alone. We actually have a pair of KAFOs that were supposed to be RGOs - WOW! How could one get away with THAT? To this day, the doctors and staff (therapists, etc.) call these braces RGOs. We've definitely had our ins & outs, as far as med. equipment. Perhaps you could ask to speak to the top person in charge and let them know that while you appreciate their time and craftsmanship, (fluff them a little), you are really having a difficult time understanding why it has taken 5 attempts to get these braces correct. I've actually had a situation where I've done this, and the management contacted me, said they could contact me further, and never did. Therefore, we no longer use that company. Years ago while living in Mich., we had a therapist that was tending to my son getting braces, and she said, "the choice is totally yours on who you choose to make the braces; however, if you choose certain places, please make sure you let me know so I can be there and make sure they get all the precise angles correct." That kind of woke me up to realizing that just because they're in the biz, they may not be in it for you, so-to-speak. We now are very blessed to have someone that goes above and beyond to get braces for the 2 kids (thank goodness!!) Good luck and let me know if they get them braces correct this coming time!!

[angel]

Ok i gotta get in on this one too. I kept hearing when my son was born the words "by definition" By definition he won't be able to walk, by definition he won't be able to potty train blah blah blah. I have SB and if i know one thing it is that definitions are most of the time useless since all of our cases are different. We can have the exact same leasion and have totally diffrent abilities. I know people with my exact same lesion that can't move anything from the site of the lesion down. I know some that walk fine and then you have me i am only paralized from the ankels down but i don't have enough strength in my legs to hold up my body. My son started walking at 13 months old. I walked into that doctor's office (without an appointment) and said see your definition isn't exactly right!!!! He was so happy!!! I put that child in a walker (the baby ones with the tray) when he was 3 months old hoping that he would at least try to use his legs and he did. He is now continent although it is a constant battle cause he isn't exactly like everyone else he does have a neurogenic bladder but he keeps working at it!!!
My own experience was with a horrible x ray tech. She always yelled at me because i couldn't stand up straight. She said the doctor said we have to get you straight for the x ray. It was impossible!!! She would go on for ever because after about 30 seconds my legs are done if i don't have my crutches. I have to sit down for awhile before i can stand on them again. Finally when i got older i had had it with the years of her yelling at me. So i finally told her the doctor can get over it. No one short of god himself is going to make me stand up straight now take the damn picture!!!!!!! Never had another problem out of her after that.
I am usually very very nice to everyone she is the only one i think i was ever rude to.