DD Update - Please Get Second Opinions

[Mayk]

Thought I would post an update....

We have been home two weeks and things are getting smoother everyday. We're not without challenges but the good news as of three days ago she's off Narcotics! This is a HUGE win because that drug was the one that complicated her condition that sent us back to the PICU...
She is doing Phyiscal Therapy three times a week and last week started doing school work from the computer completing homework assignments. She's on homebound school but the county hasn't found a homebound teacher yet so we are doing it ourself and I hired a math tutor to help me... since I can't do it all. Two more weeks of homebound and she will try and return to school on 10/28 which will be 6 weeks post surgery!!! We ARE VERY EXCITED!!! She will have a student helper for about two weeks at school and she can use the elevator at school so no steps with books..etc.. so things are really starting to fall into place..

Again..THANK YOU SO MUCH!!! for the support, good thoughts and prayers and dust... mostly thank you Enerchi.. for the 1001 text messages with medical suggestions and explanations and research as I sat in the hospital and tried to make sure I was a good advocate for her!

I'm so so so happy everything is turning around, and that she's healing nice and smoothly! I can't imagine what it's like to be a kid her age dealing with all of this. She is so lucky to have you as her momma. So so so lucky.

Madalise..you are so sweet.. thank you!!!!

 

[Enerchi]

Thought I would post an update....

We have been home two weeks and things are getting smoother everyday. We're not without challenges but the good news as of three days ago she's off Narcotics! This is a HUGE win because that drug was the one that complicated her condition that sent us back to the PICU...
She is doing Phyiscal Therapy three times a week and last week started doing school work from the computer completing homework assignments. She's on homebound school but the county hasn't found a homebound teacher yet so we are doing it ourself and I hired a math tutor to help me... since I can't do it all. Two more weeks of homebound and she will try and return to school on 10/28 which will be 6 weeks post surgery!!! We ARE VERY EXCITED!!! She will have a student helper for about two weeks at school and she can use the elevator at school so no steps with books..etc.. so things are really starting to fall into place..

Again..THANK YOU SO MUCH!!! for the support, good thoughts and prayers and dust... mostly thank you Enerchi.. for the 1001 text messages with medical suggestions and explanations and research as I sat in the hospital and tried to make sure I was a good advocate for her!

OH MY!!! MayK, I'm honoured and it was my PLEASURE to be of help to you!! REALLY!! It was like it was my own DD going thru this, so I was right there with you! I worried all surgery day, all thru the consultations, all the prayers for a good ole "fart" to come along, for all the systems to be up and rolling... and then for the thrill of the discharge day!!! If not in body, I was definitely there in spirit and internet! Thank *you* for letting me help and advise and be a sounding board and support to you!! I'm so excited she's mere weeks away from returning to school - now *THAT's* a medical miracle for us all to be thankful for.

YAY DD & all the fine medical specialists at the hospital!!!

 

[missy]

Thought I would post an update....

We have been home two weeks and things are getting smoother everyday. We're not without challenges but the good news as of three days ago she's off Narcotics! This is a HUGE win because that drug was the one that complicated her condition that sent us back to the PICU...
She is doing Phyiscal Therapy three times a week and last week started doing school work from the computer completing homework assignments. She's on homebound school but the county hasn't found a homebound teacher yet so we are doing it ourself and I hired a math tutor to help me... since I can't do it all. Two more weeks of homebound and she will try and return to school on 10/28 which will be 6 weeks post surgery!!! We ARE VERY EXCITED!!! She will have a student helper for about two weeks at school and she can use the elevator at school so no steps with books..etc.. so things are really starting to fall into place..

Again..THANK YOU SO MUCH!!! for the support, good thoughts and prayers and dust... mostly thank you Enerchi.. for the 1001 text messages with medical suggestions and explanations and research as I sat in the hospital and tried to make sure I was a good advocate for her!

OH MY!!! MayK, I'm honoured and it was my PLEASURE to be of help to you!! REALLY!! It was like it was my own DD going thru this, so I was right there with you! I worried all surgery day, all thru the consultations, all the prayers for a good ole "fart" to come along, for all the systems to be up and rolling... and then for the thrill of the discharge day!!! If not in body, I was definitely there in spirit and internet! Thank *you* for letting me help and advise and be a sounding board and support to you!! I'm so excited she's mere weeks away from returning to school - now *THAT's* a medical miracle for us all to be thankful for.

YAY DD & all the fine medical specialists at the hospital!!!

Yes, Enerchi rocks! And not just blingy rocks-she rocks it all!

So happy it is all going well MayK!!! What an ordeal you all went through and your daughter sounds like she takes after you in many ways. She is a strong young lady and will do well in life! Sending continued healing vibes and good wishes your dd's way!

 

[AGBF]

My colleague recommends Dr. Keith Bridwell at Barnes-Jewish in St. Louis but also said that Boston Children's is top notch.

Boston Childrens is among the five places I took my daughter for opinions on what turned out to be femoral anteversion syndrome that doctors started to diagnose when she was three years old. I got five different opinions on what to do. In the meantime she was tested for everything under the sun including Marfan Syndrome and Ehlers-Danlos Syndrome. She saw a geneticist at Yale New Haven and a pediatric orthopedist at The Hospital for Special Surgery in New York City. I believe strongly in second (and, if need be, third and fourth and so on) opinions. I made the rounds of the hospitals of the Northeast until I was satisfied with my answer and a physician for my daughter!

When this thread started I didn't see this posting. Today somehow I flipped to page one of it and saw it. It's old news now for you and your daughter, MayK, but still good advice for others. Get as many opinions from excellent doctors as you need to feel confident that you have grasped what is going on.

Deb/AGBF

 

[dragonfly411]

Mayk - I wish I had something constructive, but I don't, so all I can offer is hugs and lots of supportive thoughts and vibes. I'm so sorry your daughter and you are going through all of this.