My worst fears came true today (long)
SaucySarie
member
So today the girls had Rehab Clinic appointments. We get there at 2 our appointment is at 2:15 and we have to wait until 3 just for the Dr. to even come in! Then she sits down and asks "So....what's the problem?" Um...you told us to come back in 6 months and we would have another discussion about the girls' progress? Thankfully, the girls' PT came with us and helped me out a bunch. We talked about equipment for the girls- a stander, some ankle braces, and a special seat for each of them that holds their heads better (it also fits on a stroller- kind of like a mini-wheelchair). She agreed to all of that, examined the girls and said she would be right back with some papers to take downstairs for their braces. When she came back she handed me the papers and I didn't even look at them. She asked me if I had anymore questions, I said no. Then I look at the paper she handed me and my heart about froze in my chest
Diagnosis: Cerebral Palsy
WHAT?!?!?!?! I mean I always knew that from the lack of oxygen the girls suffered in utero, there was a chance, but NO ONE ever told me that this was their "formal diagnosis". So of course I call her back into the room and ask what is up. She says that from what she has gathered and her exam of the girls, they have CP. A "formal" diagnosis won't be made until they are 2, but they can go ahead and say that is their diagnosis. Complete and utter devestation is the only way I can describe it. I felt my whole body go cold and numb, and I still feel that way. I cannot believe my sweet baby girls have this and am saddened at the way we had to actually find out.
Thanks for listening- you ladies are absolutly wonderful
Re: My worst fears came true today (long)
i'm so sorry!!
<hugs>
Oh, that's horrible! Is there anything positive to having a formal diagnosis?Like perhaps their care will be more steamlined since it will be clear to providers how to treat and care for them.
It just sucks the way the doctor handled it...people can be real jerks.?
I'm sorry!! And sorry that you found out in that manner. you need to take some time to adjust to this news and come to terms with the news you have been given. And that can take time, and you need to give yourself that! The grieiving process is different for everyone. Like the PP stated, is there anything positive that comes from a dx? Such as qualifying for more EI hours, funding, etc.... When you feel ready, contact your local united cerebral palsy organization- they offer support- parent groups, and respite care as well. I think sometimes talking with others who have gone through waht you are going through can be helpful and often those parents have great insight and ideas of things to do and try and equipment reviews etc...
And although devastating news remember they are still amazing little girls who will touch so many and prove their strength and abilities to many!!!! And from what I have read on here, they are lucky to have a mommy like you!!!
Best of luck.....
BFP 3/9/12 Natural M/C 4/11/12
I'm so sorry. It sounds like the doctor could have told you in a little better manor, also.
Hugs to you and your beautiful children.
what a crap way of handling things.
I hope you work through your feelings soon. It's great that the girls are going to get all the new txs. I wonder if the PT knows of any other Drs in the area that might have a better bedside manner for kids w/ CP.
Max 4-08-08 and Michael 2-03-91 (19 years olds)
Some doctors have the WORST bedside manner. UGH. I am so sorry. But I can tell you that CP is the BROADEST "umbrella" term. It seems doctors sort of toss kids in that category for lack of better terms or more details. My daughter suffered a prenatal stroke and is technically categorized as having CP. She's far from most people's "idea" of what CP is, but honestly though, having that CP diagnosis has helped us get better services, etc., so I'm sort of glad she is listed as having it.
Hang in there. The time after a diagnosis that big is really tough. Just let it settle in and remember that your girls are just as beautiful and amazing today as they were before that diagnosis!
I'm so sorry it happened the way it did!!! That sounds horrible.
I understand what you mean about disbelief - and how it just doesn't feel real. It will get better!!!
oh wow...what a day you've all had. (((GIANT HUGS))) Lots of prayers coming your way.
I'm so sorry your doc is such an insensitive ass.