Channel 12 news

Friday, March 2, 2012

ANNOYED!!! Neuro apt update and......

I am beyond annoyed today. I called the medical equipment company to check on everything I had ordered back in OCTOBER! The woman who answers starts to apologize over and over and said they had his file in the wrong pile and just submitted the paperwork to his therapist to get it signed off on. Basically it is like I just ordered this equipment this week not 5 months ago. I am so upset. I made sure I ordered everything so he would have it when his therapy room was built and now I am sure I won't be seeing anything for months afterwards. Everyone seems so incompetent lately.

Brendan had his two hour neurology appointment. Gotta love when Dr.'s can't stay on their time slots but I do really like her so I won't complain too much. I am used to it anyway. I figured we would be there until 6pm and we were. She said he still looks really good but would like to do some botox in May. She wants to see what his new orthopedic thinks first. I really don't think he needs it. Not sure what to do. Sometimes it seems Dr.'s just want to do things that aren't completely necessary. She said it was basically upkeep and would help him a little. Any advice?

The anatomy scan is scheduled! BUT not until April 5th which feels like an eternity. I have 5 weeks before I find out if I am right and this is a boy. I am having a difficult time lately with pain. I found out I have a uterine prolapse. I can only stand for a few minutes before I have major pain. It is hard to get anything done around the house. I am really fearing the summer now with 3 kids at home. I am just hoping I don't get put on bed rest because of this.

The PASS woker is almost ready to start. I have a meeting on Monday with the agency and my PASS worker and then we should be good to go. I am beyond ready!


jenny said...

hi steph first congrats on the baby i wanted to comment on this post to you because I am learnign the hardest wayy possible what a doctor who doesnt care does to us. My orthopedic said i did not need any further rtreatment for my cerebral palsu when my hip pain first started two years ago i finally go fed up because of some thigns that happened and went and found a new one. Well I am right now basically back at square one with needing things meaning all that I am going through now i have gone through more than one time . I right now have to have a lift pur on my shoe for leg length discrepency then i have to see a nuro to see about baclofen or some form of muscle relaxer because my foor is so tight tha i can not pull my foot out to push against the docs had he said that is is so contracted that he can not brace it this way. We are hoping the meds will break the spasticity and if not it is another surgery and bracing weather or not the meds or surgery are done so eithe rway im basically starting the stress of this all over again hugs and please just make shre that if you notice any changes in brens mobility make sure u get to it as fast as you can and that the doctor adresses it Im 26 right now and very afraid that things wil not go as well for me now as they did when i was brens age good luck and hang in there hugs

We take it day by day said...

Thanks Jenny and sorry you are going through some hard stuff right now. Bren's feet are horrible. He can't really move them at all. He is on baclofen (since age 2) but I can't even tell you if it helps. He can't even move his toes. Not sure what else they can do. No one has suggested anything. Bren also has leg discrepency due to his hips. He had major right hip surgery and the Dr. didn't exactly put the hip in the best location. Something we have to live with now because I can't handle another spica cast right now.
I hope they can figure out how to help you without surgery.

Amy said...

Hey there Steph. I hate it when people don't follow through. I am annoyed with you because you started so early on ordering that equipment for a reason... so it would be ready when the room was. How frustrating!! That kind of stuff happens to us all the time.

Emma also now has a leg length discrepancy because of her hip subluxation. We are not doing surgery yet though. Does Brendan have a lift on his shoe? I think Emma might need a bit added to hers.

I don't know what to tell you about the Botox. I agree with you that sometimes doctors just like doing things to feel like things are getting done. You always make the right decisions though, and hopefully the orthopedic doc will have some helpful advice. What does his PT think? He seems like he is doing so well regardless. I sure was hoping he would not need it for a while longer...just because.

Sorry about the uterine prolapse. That sounds like a doozy. Hopefully, the PASS worker will be a big help with Brendan, so you can have an easier summer. I might start looking for summer camps or other activities for the kids to keep them busy. :)! Yikes, three kids, and one on the way! That makes me tired thinking about it! But, what fun too! I envy you so much! I wish I had a least one brother or sister for my Emma. You are sure one busy mommy! Hugs!

We take it day by day said...

Yes I am very busy Amy. All three kids might be in school when this one arrives (well soon after) and I will have a few hours of alone time with him/her. :) I am excited about that.
Brendan's old ortho did not recommend a shoe lift. I will see what his new ortho says. I noticed at special olympics that he was starting to scissor a bit so maybe he will need botox come May. boooo.
I am happy that Bren has 3 other siblings to help him out when he is least I hope they will. We have a very close family so I hope it stays that way. His sisters are already so helpful and I really appreciate them.
Pass meeting tonight! I am so excited to get this thing started.Brendan just asked me if I had to give her money. TOo funny he is thinking about that. His brain is working!