Like last week, Henley and I will be checking her weight and blood counts with her doctors this week at the U of M. We were excited to see her weight has increased from 3.75 kg on Thursday to 3.9 kg today! Her blood work continues to be below normal ranges, but we are reminded by the doctors that looking at those red and white cell numbers on paper are just one piece of the puzzle. Her doctors feel it's not necessary to do another transfusion at this time because her energy level is relatively good, she's eating every two hours and she's continuing to gain weight. Developmentally, it's been a lot of fun to watch her smiling more and more and trying communicate by cooing at me. This natural progression her in her development is very encouraging to us and to her doctors. Our next check up will be on Thursday this week.
Although a few test results have come back, we are still waiting for two tests that relate to Shwachman-Diamond syndrome and another that is looking for Fanconi anemia. It is hard to wait, but these genetic tests take time, so we are exercising patience and celebrating the positive bits of news we are getting - like weight gain and some stability in her blood work.
While we wait, Henley and I have been doing lots of walking... so much walking that I actually got blisters on my feet! That encouraged me to break down and buy a new pair of tennis shoes. The ones I have wearing for the last two years were actually a pair I stole from Kyle! lol
We will share more, as soon as we know it. Thank you for all your messages, cards, encouragement and support. It means so much to us. ♡ Jess, Kyle, Henley, Coven + Everly
