It is looking likely that we will be heading home tomorrow! Christa can't think of a better way to spend her birthday on Wednesday than to wake up in her own bed without constant interruptions from doctors and nurses. I can't argue with that.
We are starting to get a clearer picture of what we will need to do for Carly in the coming weeks and months. Carly will have MRI imaging every three months to monitor the remaining tumor. Should it stay unchanged they will leave it for the time being. Should it start to grow significantly they will need to perform a second surgery which would be very similar to this round. There is a chance that if it does not grow appreciably before her third birthday that it could then be treated with radiation, but this is an outside chance. Because of the location of her tumor, there has been decreased function of her pituitary gland. At this point it isn't known if this is just a temporary issue while there is post surgical swelling in her head, or if it is permanent damage. Carly will need thyroid hormone replacement daily, cortisol replacement three times daily and daily injections of DDAVP to help control her hydration levels. At some point down the road they can test again to see if her body has healed enough to take her off of these medications and we will continue to envision this as the ultimate outcome. If the damage is permanent, it can be be dealt with using careful monitoring and medication and she can live a normal life in all other areas.
We will also immediately begin seeing vision and developmental specialists to ensure that Carly can make up for any lost time. We are blessed that we are already being connected with a great network of experts in these areas and we know that with some effort on our part and by Carly she will get where she needs to be. It is very clear to us that your love and support helped get us safely this far, and we will continue to need it as we try to get Carly back on the path that we have envisioned for her since she was born. Hugs all around.
Love, Brad
11 comments:
One step at a time will get you there. Keep up the good work -- all 3 of you. Continued love and support to all of you. Am so glad that you will be heading home soon.
Hats off to both of you too, as well as Carly, for navigating all this - very happy that you guys can get out of the hospital soon - proud of all of you. And again, big thanks for keeping everyone informed via the blog. I get all the updates from Nicci of course but it's still nice to read about the extra details and such and hear how you are doing.
-s
I am so happy and relieved that Carly is doing so well. HAPPY BIRTHDAY CHRISTA!!!! It is wonderful that you will be home with your family for your special day. Sending good energy your way..........
Anne Cline
Brad, Christa, this is wonderful news! I'm glad you are able to go home and start the next phase of Carly's recovery.
There is a whole lot of good karma flying your way from all the people who love you guys!!
I'm looking forward to being able to attend a Purdue basketball game with the youngest Boilermaker in the Nelson family maybe the next time mom and dad come to Indy!! :)
Its funny, when you have kids, birthday wishes don't seem to be on your mind anymore, but this would be the best wish possible.
Hugs all around!
there's no place like home! so happy to hear the news. i bet you guys will feel so much better staring the next phase of the recovery being in your own space.
lots of kisses,
kate
Great update, being home sounds amazing, and a nice birthday wish for Christa.
You both continue to have an incredible perspective and positive outlook on all this. We're certainly benefiting from watching you both handle this so well - excited to see you sometime soon.
so glad to hear you are going home! you are wonderful parents, blessed with a tough and beautiful little girl! Happy birthday Christa... we send lots of love from Jersey!
big hugs,
Keith & Sheila
Wahoo! Very exciting news...goin' home, Birthday, new teeth!? Solid. Lots of love.
What a great birthday present! So glad you will all be home soon.
Love, Jane
So glad to hear things are progressing smoothly and Carly is healing fast. We are thinking of all three of you every day and sending lots of love from New Haven.
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