A Lil' Boy's Journey to Live….

Archive for January, 2014

Donor Dash .. Join Team Smile4Riley

Please Join Team Smile4Riley for the 19th Annual Dash for Organ & Tissue Donor Awareness! April 13 ’14 ♥

http://t.co/Ze1Cx3Y8o8 ~

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Riley’s Epstein-Barr Results are In!

Good News! Riley’s EBV (Epstein-Barr) count has come down from 125,000 to 22,000!! So No full body scan!
The reality is that this number could again go up but for Now .. Today .. It has come down! Take It .. ♥

Riley’s Visit with Dr. Kreindler (Pulmonary) .. ♥

Riley had his visit with pulmonary today. Big Picture .. Everything is Good! All of his labs came back in range. Still waiting on EBV and CMV. If his Epstein-Barr numbers (copies) have increased .. Dr Kreindler agrees we need to be proactive. He will discuss with the team doing a full body CT scan. There is a good amount of radiation involved with doing this but everything is a balancing act. There is also the possibility of adding dentistry to the mix before/after the scan. (See ya soon Dr Bressler!) Another balancing act. Riley’s risk of infection is obviously higher then normal when you start poking around in his mouth. That being the reason it won’t be attached to his Cath/Bronch.
If Riley’s EBV is the same or better we won’t do the scan. In which case we’ll revisit a plan for dentistry. (After everything Riley has been through he will not open his mouth and allow work to be done in there.)(Riley has dental concerns because for the first 5yrs of his life he threw up all day everyday from reflux.)
I will update again when we get his EBV and CMV back.
Love to you All for All of Your Love and Support ..

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