1 year evaluations. Day +349

Naomi had 3 appointments today. Her daddy took her to them all so that I could stay home. 🙂

Her pulmonary function test went smoothly.

Her labs were quite good with platelets over 200,000 and hemoglobin at 11.8. RBCs were my highest recorded result of 3.66. Her WBCs were in normal range but slightly depressed due to a virus she is fighting. She was ill over the weekend, vomited a few times, but is recovering very well. And that is with her not having gotten a flu shot…..
Her cardiologist appointment went smoothly, too. Last year, before transplant, we were informed that she had a small hole in her heart that would likely require some surgery. Today, they told us that “her heart looks perfectly normal” and that hole is gone. Blessings and miracles continue to manifest for her. She will have a follow-up with the cardiologist in one year to monitor for possible chemo effects. I hear the cardiologist appt went very smoothly since How To Train Your Dragon was on in every room in the building. It seems that fact made all the leads she had to wear easily forgivable.

We look forward to the new year with so many exciting events on the horizon for us. We wish you all a very happy and healthy new year. Your support and encouragement has been such a gift to us.


Day +347

Naomi took her last dose of cyclosporine today! She will continue to take Bactrim for 8 more weeks. The dosage for Bactrim is 2 tablets 2 days per week. So, for 5 days a week, she will have no medicine at all to take. We welcome the normalcy.


Last Week of Cyclosporine! – Day +341

The difference between this Christmas season and last is like night and day.

Last year, we were preparing for transplant.  She was getting daily IVs and injections, and transfusions multiple times each week.

This year, Naomi is getting off meds and our house looks a lot less like a pharmacy.  She has been transfusion-free since March 14.  That makes it over 9 months since she has needed a transfusion!

Today is the first day of her last week of cyclosporine! She will take 1 capsule each day this week.  No second dose in the evening.  Just 1 a day!  So, today, we packed up all her extra meds and have them prepared to drop off at the Metro police department (which is the way meds are supposed to be disposed of around here).  We took the monkey lunch bag that was housing her thermometers and meds and put it back into the cabinet with other lunch boxes. The thermometers are put away with bandaids and other first aid supplies.  It is so nice to not be living in fear anymore!  I cannot remember the last time I used a thermometer on her, although I will admit to habitually hugging her in a way so as to feel her forehead temp.


Day +320

Naomi had an appt with her local dr on Monday. She is half way through weaning off cyclosporine and her counts are very, very good. Almost all in normal range, except RBCs (which were not far), and her ANC was an astounding 4100. We are so thankful she is doing as well as she is!

She started a new class at gymnastics this week and is officially part of the competition team. She will be fitted for her competition leotard tomorrow (Wednesday) and has her first meet in Feb 2015.

The next few weeks will be a little nerve wracking as she goes for an endocrinology workup, dentist appt, ekg/echo and has. A pulmonary function test. But, by the end of the month, all her one year evaluations will be complete and we will know exactly where she stands.

We hope your Thanksgiving was full of family and friends. We were glad to spend the today together and look back over the past year with more gratefulness than can be expressed with words. As Christmas approaches, we look forward to an abundance of family time. If there is one thing we have learned this past year, it is that family time means more than anything. No gift can replace the gift of time and togetherness.

Please keep the many families preparing for transplant and working through immune suppression protocols in your thoughts and prayers. The holidays are especially difficult for those separated and hoping for a miracle.