Matt is uploading a video as we speak of Brady taking some steps today! Two different times today he got in the mood to walk! He was having a great time walking back and forth between grandma and I this afternoon. Later tonight he walked to grandpa and Matt got in on tape! The cutest is that Brady kept saying "Brady walkin!"
Brady has his PT evaluation scheduled for Thursday at 8:30. We are going to CP of Rochester which has a pediatric outpatient clinic for physical therapy. I don't know too much more about the facility, but it has been highly recommended to us. Please be praying that Brady will get over his fear of new people and feel comfortable during this appointment. I think we will be going two times a week. It is about 50 minutes each way, so this is a big committment. I'm really excited to see Brady soar!!!
Check back later for the great video!
Sorry about the delay - long story, big headache.
Matt
CLICK HERE FOR BRADY VIDEO
Showing posts with label CP of Rochester. Show all posts
Showing posts with label CP of Rochester. Show all posts
Tuesday, April 28, 2009
Monday, April 13, 2009
Back in the Swing of Things
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!
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!
Wednesday, March 11, 2009
I need a secretary!
What exactly happened today? Days are passing by one by one, and we don't seem to be getting anywhere!!! I called Sloan this morning to see if they received the fax yet, they hadn't. They told me that they already had called Strong and that they were working on it. Seriously, how hard is it!!!! Short of driving the papers to NYC myself (which I did consider) I decided to take a deep breath and focus on the insurance stuff. I spoke with the insurance person at Sloan who told me approval through our insurance was pending. He gave me a reference number and told me that the insurance company would be calling. Given that very few things ever go according to plan around here, I decided to call my case worker and check up on what the rep at Sloan had told me. Come to find out the reference number he gave me was a number related to a claim from one of Brady's stays at Strong...huh? The case worker was stumped as to how/why he gave me that number. She gave me a link to the authorization form that needs to be filled out and I immediately called Strong and our wonderful NP is on the job. She is fantastic and when she says things will happen, they do. Progress today?....I guess a little, but I feel no closer to Sloan than I did yesterday. It's funny to want to go somewhere so badly, yet the thought of actually going there scares me beyond belief. It's weird because the last time Matt and I have been on a trip is when we went to NYC with friends when we were first married, before kids! Needless to say, this doesn't feel like a vacation!
So, faithful friends, please keep this process in your prayers. I just keep praying that God will continue to open the doors necessary to get Brady to NYC. I'm starting to pray daily for the surgeon, Dr. Laquaglia. I have heard that he is a man of faith and that he gives all the glory to God for what he is able to do surgically. Hopefully tomorrow will bring news of some progress! One more thing, Brady has an appointment next Wednesday at CP of Rochester to start physical therapy. We are hoping to get in a few sessions before we go.
So, faithful friends, please keep this process in your prayers. I just keep praying that God will continue to open the doors necessary to get Brady to NYC. I'm starting to pray daily for the surgeon, Dr. Laquaglia. I have heard that he is a man of faith and that he gives all the glory to God for what he is able to do surgically. Hopefully tomorrow will bring news of some progress! One more thing, Brady has an appointment next Wednesday at CP of Rochester to start physical therapy. We are hoping to get in a few sessions before we go.
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