We had a great family day today. We were all in our pajamas until 11 or so...definitely a great day:) Matt isn't going back to work until Thursday, so I'm looking forward to a lot of "lazy days" around here (ha! lazy days with 4 kids)
I had a few calls to make regarding insurance and setting up appointments. We have our follow up appt with Dr. Laquaglia on April 22nd. That means we will probably fly down that morning, see him sometime in the afternoon (again, no specific appt time), and hopefully fly back that night. It is tough to stay just one night at Ronald because you have to clean all sheets and towels before you go. We also looked into Corporate Angels (free flights on corporate planes.) There are flights that day, but leaving from Elmira, which is two hours from here. Not sure what we will decide to do yet. We have to figure out if the money saved by using a free flight is worth the extra 4 hours of driving time with a toddler:)
I also called to see if the pathology reports were available from the tumor that they took out during surgery. I'm struggling now trying to figure out who is our "go to" person as far as Brady's cancer treatment. We were hoping to make more of a connection with a doctor at Sloan, but really our trip focused primarily on the surgery. We did speak briefly with a member of the oncology team on Friday before we left, Dr. Modak. He was very kind, informative, and seemed to really understand our concerns. I called his office today to see if he could contact us with the results, but didn't hear back. It's obvious that we have to stay on top of things now. No one at Sloan has our name on their "to do" list. We also called our oncologist here at Strong just to touch base with her.
We are still rejoicing over Brady's progress. Today was another day of exploration and fun for him. The only difference we notice is that he gets more tired before naptime and bedtime than usual..can you imagine how much healing is going on in that little body? Tomorrow we are going to call CP of Rochester to set up Brady's first PT appointment with them. We certainly have a lot of work to do to get him caught up, and it seems like Brady is ready to get going!
AWH!!! My dear friend! Your strength amazes me. Ellie had a bit of an accident today and I had to hold her down ( I was a wreck)while they glued her forehead, and on my ride home I thought how strong you have been through all this. I could not endure what you have been through or still have to go through. I admire your organizational skills to be able to stay on top of it all, with 4 kids. Brady is lucky to have such a great mom and dad. Hugs, xoxoxo
ReplyDeleteGood to know you are all enjoying the family time. Keep us posted on the progress. Prayers will continue to flow from our lips to Gods ears. Go Brady!!!
ReplyDeletesorry I haven't been commenting much... you have all been in my thoughts and prayers each day.
ReplyDeleteWhat a blessing to be healing and moving foward with treatment.\
So many blessings!
It's exciting to think you'll be starting PT so soon!! :o)
ReplyDelete-Rosalie
Thanks for the update! That is awesome that Brady is getting on so well!!
ReplyDeleteWill keep praying that you guys get on the radar of a fabulous and gifted Doc and that you mesh well with him/her so Brady's care doesn't miss a beat!!! :)
You guys have earned the down time....enjoy it :)
hugs,
Jeri
Oh yeah, Prayers for you guys to stay strong. You are a great Mama Lion taking care of her cub. Keep up the fight!!!
ReplyDeleteMeg,
ReplyDeleteEnjoy your lazy days with four kids. I can see the smile on your face as you and Matt sit back and watch the kids play.
Enjoy! You deserve it all,
Love and prayers for continued strength for you and Matt and healing for Brady,
Deb R.
that brady amazes me with his strength...what a great little guy. god is working some good stuff thru him...and you!
ReplyDeleteYeh, it's always great to get back into the swing of things. All day in pjs sounds better than half the day! lol After what he's been through I imagine he would be very tired out!
ReplyDeleteOur youth group just is dumbfounded at the good report I gave, and yes Megan....I had chocolate and Mt. Dew for Easter weekend, since you gave us good news. But we will go back to fasting it again, it really didn't thrill me all that much believe it or not!! Hugs sweet Brady and goodnight!
Our little Charlie is having some vision problems, he might be losing sight in his left eye, and I am quickly learning that we do have to be advocates for our children and stay on top of all the medical mumbo jumbo! You are doing a great job and I have been drawing strength from you in the last days (we only found out about Charlie's issues last Thursday).
ReplyDeleteI bet the world is a whole new place for Mr. Brady!! Along with the miraculous healing that is taking place inside of his little body, can you imagine the doors that are being open for him as he gains mobility?!!? So very cool!! I bet he is itching to tackle his siblings or chase them around the house....soon Brady, soon!!
Glad you guys get some quality family time!!
Praying!
It's so hard with a big teaching hospital to find the right "go to" person. I would suggest that you ask Dr. L during your appt, who exactly you should be contacting in the future. It would certainly make it simpler to have one person to contact since you are so far away from the hospital.
ReplyDeleteAs far as the free flights go, if they can get you back the same day, I would go for it. Remember, the 2 hr travel time is just that. If you fly a commerical airline , you have to get to the airport early at least 2 hrs before flight, wait on long lines, exposing Brady to plane full of germs and airport full of germs, possible delays and hold ups..etc.. where as with a private corporate flight you dont have to get there that early or even go thru security, and there are NO long lines, and sometimes there might only be 1 other person on the flight with you! The private planes are much more comfortable, with huge comfy seats, think better than first class!! With that in mind, I would go for the 2 hr car ride and free flight! Good luck!