Today Dillon's clinic appointment went very well. They have decided they are not going to worry about the rash....i.e. no biopsy needed (Dillon was so super happy to hear that). They don't think it is GVH and unless it develops into something more than it currently is, they are happy with us just scrubbing and moisturizing to keep the dead flaky skin at bay. His counts were FANTASTIC!! He was scheduled to have an infusion of a super strong antibiotic today (it happens once every 2-1/2 weeks) but his white blood cell count, hemoglobin, and platelets are so good that they have discontinued that and put him on a much more mild (read as...fewer side effects) antibiotic that he only has to take 3 days a week. Dillon's blood pressure continues to creep up and stay up so they had to start him on a very low dose of an antihypertensive medication. If you recall, the blood pressure increase is directly related to the IV steroids so as those get tapered over the next 6 to 8 weeks so will this blood pressure medication.
The biggest news today......
NO MORE TPN!!!!!! The grin on my boys' faces, when the doctor praised his efforts at eating and drinking and then made the announcement that the TPN was to be stopped immediately, and the breathless "YES" that his brother uttered with the classic fist pump was PRICELESS.
Ahhhh the joys of having the support and love and encouragement of Mr. Luca Bear. Dillon is truly a different kid with him around. He is...if I can be so bold as to say....more normal, more himself, more a kid. Luca would stay forever if we let him....hummmm, I wonder how Sean would feel about that....hehehehe.
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| Messing around with the super fun game that Thane sent. |
We are planning to go see some holiday lights and do some other fun stuff this week. Nana and Grampy will arrive on Friday for the weekend. Sean is back in Santa Fe with his nose to the grindstone for the week without Luca....hopefully he remembers to have a little fun and to sleep :)) Everybody here in Denver is still healthy, so I think we avoided disaster this time with the illness that Sean brought with him...whewwww...now we have to tackle cold and flu season.
Everyone stay healthy, stay connected, and pray for SNOW!!!!
yay!!! it is so fun to hear Dillon (and family!)getting out and about and eating and having fun!!! I highly recommend the Denver Zoo holiday light display: amazing animated animals of neon and more. It's a bit of a walk through so either pace and do it in stages or maybe bring a scooter chair. It's really cool. Happy holidays to you all. So thankful to think of you on this side of the journey. Dillon, you will always be one of my heroes and the whole Buckley clan gets my vote for family of the year. Big hugs!
ReplyDeleteSuch great news on all accounts. No more tube feeding...HOORAHHHHH. It's like he's a baby and we're all cheering on his first step!!! So proud of the young man he is. What strength and character he's showing us all. We've all got a life lesson from him for sure. For colds/flu I take Yin Chiao...could I perhaps send you some? It's herbal and kills off colds/flu really quickly. Let me know and I'll drop ship to you. Auntie Marilyn
ReplyDeleteGreat to hear such fantastic news!! And, happy (pre) birthday to a true hero. You are such an amazing person. Enjoy your day with the boys!! :)
ReplyDeleteHappy Birthday Shari We love you. Look forward to seeing you soon. Love you too dillon. Give you mom a big hug and kiss for me and Miel.
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Best news yet!
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