At Naomi’s outpatient appt., we were a bit disappointment by a drop in her levels  If one thing it true, it is that AA is a very frustrating disease.  These fluctuations are to be expected, and nothing is unusual about it.  Her levels are still plenty high enough to keep her transfusion-free, and that is really a good thing.  Her ANC dropped back down to 500 and that is very frustrating.  The target is 1500 for her to be able to return to Vegas.  We are only on Day +33, and I admit to being impatient today.

All of my patience for today was apparently spent in traffic.  😉

Her kidney function results were a bit high, too, indicating they are not flushing enough toxins (created by her toxic meds). So, one of her meds is on hold until her creatinine and urea nitrogen levels drop back into normal range.  To do this, her IV hydration overnight was reinstated.  It is almost impossible for a person to drink enough on their own for the meds to be flushed through the system.  We now expect that her IV hydration will continue into next week.  We tried a few days without it and some of her kidney toxicity levels doubled indicating it was too early to stop them. It does
Not really restrict her activity since it is infused through the night. It is just more responsibility for me and I do not sleep well when she is connected to an IV…. Even though she appears to sleep fine with it!

The wonderful news for today is that we are celebrating Niamh’s 4th birthday.  Happy Birthday, Niamh!  

It amazes me how much she has grown over the past 6 months.  I think back to her before Naomi’s diagnosis and look at her now and can see such a difference in her behavior.  She is much more compassionate and calm.  She still has quite a bubbly personality, but is much more subdued and she can actually be reasoned with at times.  Time has changed us all, I guess.

Tonight, we will be having a little party.  We have invited all the other guests at the RMH to join us for cupcakes.  One of the families from Mexico was so sweet to get Niamh a globa mariposa.  Unfortunately, the weight it was attached to came off and it flew away into the clouds.  The sweet Mexican girl who gave it to her then brought her a teddy bear that we promptly named “Mariposa.”

Niamh had a great party and we all enjoyed cake and company. Niamh was most excited about her new shoes for her birthday. 🙂