Thank you for the update. Continued thoughts and prayers!

Thanks for the update My10RR! Keeping everyone in my thoughts and prayers

THanks for the update My10! I hope whatever they decide, she does well with.

Sending my very best .... such a lot to be considered

Hi My10, sorry to read about your granddaughter. Sending prayers and much love to you all!

Mary

My goodness that's a lot of hospital stuff to go thru at such a young age. I dealt with a lot of docs myself when I was young so I've an idea of what that's like. Hope it all turns out well.

got a update today. the dr made their decision to defer . daughter siad she expected this is what they would do for now. so what they want to do is monitor her closely in the clinic as a outpatient. they are still hopeful that the meds will help improve function. she has to a video visit with one of the surgeons still since he was unable to meet with them while they were up at the hospital in kansas city. will let you know more when i hear more from daughter. thank you everyone for all the thoughts and prayers.

Thanks for the update, my10. Will pray the meds make a difference

Hoping that the meds work for her my10rugrats!

I'm glad it wasn't a decline. It would be good to see if she can build up strength before having such a major surgery. Keeping her in my prayers.

Ana

I hope the medications will improve her function. I will keep her in my thoughts and prayers.

thats what we are hoping too. her neck has been hurting a lot and warm or even a hot rag hasn't helped. daughter said she may have to call up there to see what she can do

Prayers

Still sending my best for her

My best for her for sure.

Prayers heading up. God bless My10.

Still sending prayers and positive thoughts for her and for you.

Here is the lastest update : Today’s visit went great! Her heart rate is down in the lower 90s. We haven’t seen it that low in almost 7 years. The dr was very pleased with how well her body has responded to the new meds. He has given her clearance to get some dental work done. We found a dentist willing to do it. We r beyond blessed with such an amazing team at St. Luke’s. So thankful for all of them. They have been so patient, kind an understanding. They have taken the time at each appointment an test to explain everything to Brooklyn so she understands an feels safe. We go back mid October for another check up an he’s hoping her heart function will have improved even more. 💞💞

Great news my10rugrats!

That sounds really good my10.

Really pleased to hear that good news, my10rugrats

That is wonderful news.

Great news

That is wonderful news!

Wonderful news.