I've never been so proud of my boy! So today we had the "dreaded bath", Broviac flush, and his GCSF shot. Brady hates his bath because we have to put his Broviac tubes into a sandwich bag, tape it to his chest, then lay him down with his head hanging over the sink to wash his hair. We can't get his Broviac site or his back surgery site wet. Then we sit him in two inches of water and attempt to clean him as best as we can. WELL!!! Today he went through the whole process without a tear. He and I just talked and I was able to talk him down as he became upset. Then I did his Broviac flush before I got him dressed. We talked about each thing I was doing, and he got to choose which tube I flushed first. Now he is getting so keen to things that he watches to make sure the bubbles from the syringe don't go past his caps. Still no crying! Then after dinner Grandma was all set to do his shot. Grandpa was holding him and I was in the other room. All of a sudden I hear "All done!" He never cried! This certainly isn't commonplace, but maybe he is starting to understand that most of his discomfort is short lived.
Brady and I will be at the hospital at 9:30 for his first ever transfusion. We will be there for 3-4 hours. Still racking my brain as to how to occupy him for that long. He isn't a big tv watcher...I guess I will rely on my arsenal of snacks!!! One of our followers asked about donating blood in Brady's honor...LOVE THAT IDEA! I actually have thought about organizing a blood drive in Brady's name sometime in the future. Blood transfusions are a common part of a cancer patient's treatment.
Still no word from Sloan about a potential appointment. I keep calling our oncologist, but she hasn't heard from them.
As far as physical therapy for Brady, we found out some great news today! Our county Early Intervention Program will pay for Brady's physical therapy even if we go to Rochester for it. We are looking into an outpatient clinic that focuses on children, they even have aquatic therapy. It will mean driving there 2-3 times a week, but we are totally willing to do that! Our insurance would have covered 30 visits, but with a $40 copay. To have this expense out of our mind is a huge blessing!
Please pray for our safe travel tomorrow. Please continue to pray for Brady's healing. Other parents of NB children have been on my mind lately too. There are SO many children suffering with this disease, many of whom have Stage IV with a much more bleak prognosis than Brady. Please say a prayer for those who are suffering far more than we are.
Tighe has his MRI tomorrow. We'll be praying for good results from Brady's MRI on Thurs.
ReplyDeletepraying for you!
ReplyDeleteSnacks are my secret weapon. My 2 yr old daughter LOVES yogos...and only gets them out when she gets restless.
Meg,
ReplyDeleteSometimes your message totally blows me away. In the mist of all you are going through and the "things" yet to come, you are requesting prayers for other NB children. I certainly will add them to my prayers.
God Bless you and Brady tomorrow,
Deb R.
Great to hear everything went so smoothly tonight! What a good little guy! Good luck tomorrow. I'll be saying prayers for you both. I'm sure you've already thought of this stuff because it's not especially creative, but does Brady like to draw or color or read books? That stuff is all pretty portable. What about a listening to a head set? Sophie wouldn't like it and they're about the same age, but Jack used to at 2 so maybe it's just a personally-type thing. Do you have any puppets? Maybe you could bring a few books and act them out for him with the puppets and then play puppets together. I think those things would fit easily into a backpack or diaper bag. Maybe an etch-a-sketch?? Can you use your phone there? If so, maybe you could let him call his brother and sisters once or twice. My kids LOVE calling people!!! Let us know how it goes. Love you.
ReplyDelete-Rosalie
PS Good luck to little Tighe tomorrow, too. :o)
Safe travels for you tomorrow and god luck with the transfusion.
ReplyDeleteSteph
Hey Meg,
ReplyDeleteWhat great news about Brady's new found peace with his procedures with the Broviac and bathtime.
I just got home from Triplet Group Dinner and what a great turn out 10 or 11 women. I personally think it is because everyone thought you would be there:) Dr. Heather came too!!! We even had a newcomer! Well everyone is thinking of you, Brady, and the rest of the family. Many prayers being said.
I will be praying for safe travels, and a smooth transfusion tomorrow. Love & miss you!
P.S. The last message was from me, Jill :)
ReplyDeletei am so praying...and so thankful that already brady is in such an awesome fam! i'm thrilled ot hear there were no big screams today...sounds like a huge accomplishment! praying for the transfusion to be peaceful...and brady to be occupied...and of course, for healing!!!
ReplyDeleteMeg
ReplyDeleteI love reading your blog, you write so well & hearing what an amazing family you have and that Brady, he really is outstanding, trying to find the words to describe him and how far he has come, these words are so hard to find.
I will continue to pray for you all! Good luck with everything this week. Let me know if there is anything I can do down here in Raleigh!
Lots of love
Rachael
We will remember you in prayer, i know of some of the exhaustion in calling clinics and numerous doctors in/out of state trying to get procedures done, insurances not paying. You're constantly working the phones and all you want is your loved one to get immediate and the best of care, yet you're torn b/c if you don't make the calls and be the squeeky wheel you don't get results, hang in there...it will pay off!!
ReplyDeleteMegan, I check your blog everyday and I can not beleive your strength. Tears roll down my face as I read it. I am praying for Brady and your family. You have helped me appreciate my healthy trying teenage boys, ages 14 and 16, more than before. I feel so greatful to have 2 healthy teenagers, that the minor problems we have are so minimal to yours. Sharon Newton (Jackson)
ReplyDelete