Day +191

Naomi had an appt on Monday this week since her dr started hospital rounds on Tuesday. It through us off a bit. We also had a very busy week around the house with the oven breaking, Aaron having long meetings and activities, school work, etc. If it sounds like “normal” life, well, it pretty much is!

At Naomi’s visit, we had prepared for a possible IVIG infusion since her IgG fell to 515 last week and 500 is her lowest acceptable limit. She had been fighting a cold and had a pretty nasty cough last week. But this week, her IgG went up on its own again for the second consecutive cold/illness. So at 595, she avoided another IVIg infusion. We are so very thankful!

She will have labs done the week of 9/20 and then have her monthly Pentamidine (ALREADY?!?) on 9/27. Then, beginning October, we will go to appointments only every other week! We are so very excited. Her cast comes off 9/20 also. With appointments every 2 weeks, she will have Pentamidine at every other visit. We figured that she will have only 13 visits remaining until her 1 year anniversary.

She had A LOT of labs done this week that will be sent to Wisconsin for processing. They are checking her engraftment levels and such. We are anxious to get those results.

As the week has progressed, her cough is completely gone and she is acting like a very normal child – resisting bedtimes and rolling her eyes when I ask how much water she has been drinking. Still on IV fluids 10 hours per day, she said today that she is going to commit to drinking more fluids to get off the bag. I laughed. I have heard that before.

Her labs this week were absolutely amazing. Platelets 325, Hemoglobin 12.5, ANC 6700. Not only was she fighting the cold but her marrow was like super marrow amping up those WBCs and kicking the illness to the curb. Amazing!

We are due for a photo update if I can get one. Those curls are coming back fast now. 🙂

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