Monthly Clinic Visit 12/15

Piper had her monthly clinic visit today and all is well. Chad had the honor of bringing Piper alone while I juggled Linley and got caught up with present wrapping, endless laundry and housework and working on an pile of to be filed papers. It was lovely...I didn't say a word for 6 hours and frightened myself when I laughed out loud at a Seinfeld re-run. (Elaine cracks me up every time) Like I said, lovely.


And clinic apparently went well. Piper was given steroids before her IVIG transfusion and subsequently did not have any reaction to it and was able to complete it in the normal four hours. Her chemo (vincristine) went without delay and the Nurse Practitioner was pleased with her almost half a pound weight gain. (6.4kilo last month, 6.6 this month) Pipers ANC was higher than they prefer to keep it during treatment. The goal is closer to 2000 or so and she was at 5300 so Nurse Amy upped her weekly methotrexate to 3 pills instead of 2 and a half and upped her 6mp one night a week to see if it keeps her numbers within the more appropriate range. BUT...everything looks beautiful, there are no concerns.

Piper is eating her weight in Ritz crackers. And shredded cheese. She nibbles willingly on pistachios, eggs, and raw baby carrots. I have to admit that I was thrilled to hear that she had gained weight because I dropped one of her 4 daily four oz. formula feedings. She was puking every night and I just felt like it was a futile attempt...the last thing I wanted to do was to create yet another food aversion. She now takes four oz. 3 times a day and is eating much more. So, less calories going in from the formula but none coming back up and less diarrhea.

We had a visit from the Babies Cant Wait team last week. It was pretty much unanimous that Piper more than qualifies for help. Hopefully, she will be beginning weekly therapy in January and I am still attempting to get additional treatment through the hospital where she gets treatment.

Today begins her 5 day pulse of steroids. Last month was pretty easy but we have had some months that were horrid. I never know what to expect but thankfully we were able to bump up her monthly visit to today instead of next week in order to have her off steroids and back to her sometimes fussy/always cuddly self for Christmas.

So there you go. I am sure I will remember something else but as for right now I am going to go crawl into my clean Apple Mango Tango smelling sheets and mentally celebrate that tomorrow is Linleys last morning to have to get up before the sun for 2 glorious weeks.