Wednesday, March 21, 2012

March Stats

Macy had appointments yesterday and today.  Yesterday was her regular 18 month well child.  She was not a happy camper even though they didn't poke her.  Even with that her Dr. said it was the happiest she ever saw her which made me realize they never get to see Macy happy which she is...98% of the time.  I hope they don't think she is upset like that all the time because that is definitely not her.  Oh well.  So her weight was really hard to get because she had a death grip on my arm and would not let go to be weighed.  She screamed and had a total meltdown when the nurse tried to take her from me so they just let it go.  They were able to weigh her today though and she is about 19.5 lbs. which puts her in the 1st percentile.  Her head 17.75 inches which is about the 14th percentile, and her length 31 inches which is the 30th percentile.  

All in all the appointment went well, and there are no concerns.  Macy is meeting her milestones (even though she started walking a little later it was still in the range of what normal is) and is healthy.  Even though Macy has shown absolutely no indication of any hearing issues; it is common for children with FA to have hearing problems so we arranged to have Macy's hearing checked once per year.  So we will be doing that soon.

Today she had her hematology/oncology appointment which is the important one.  Her bloodwork came back awesome!  Now that we know Macy is FANC-A, her Dr. said her bloodwork should remain stable for atleast a few more years.  That's a nice relief, and who knows; maybe they'll find a cure by then.  Her bloodwork stats are as follows:

WBC (white blood count)  Normal range: 6-18, and Macy was 11.46

ANC (absolute neutrophil count) Normal range: 1.5-6, and Macy was 1.6

Hemoglobin Normal range: 10-14, and Macy was 13.3

MCV (mean corpsucular volume--size of red blood cells) Normal range: 74-90, and Macy was 88.2

Platelets Normal range: 140-400, and Macy was 230

ALT (measures liver enzymes)  Not sure what the normal range is because it was the first time she had it done.  Hers was a 22, and I am assuming it is in the normal range since nothing was said.  

Retic Absolute (baby blood cells)  Not sure what the normal range is but Macy's was a 52 and her Dr. said that was excellent.

So all in all Macy is doing great!  She is loving the warm weather outside and we are excited to leave for vacation in a few weeks.

take care,


  1. Have fun at Disney with your beautiful little girl. So glad she's doing so well, that's all due to you and your husband giving her the life she needs.

    1. Thank you! We are excited to get away and relax is long overdue! :). We try our best. Take care, Jenn

  2. Awww...she's so sweet. She reminds me a lot of Emma at that age. Emma walked at 17 months and always screamed at the drs too. It's taken years to get the screaming to leave. She'll still do it when they poke her a million times to try to get an IV.

    Her counts look great. I did want to mention that your doctor's prediction on when her counts might start having issues might not be quite as predictable as he thinks. Emma is in group A and started having lower counts under the age of 3. It wasn't until she was newly 7 yrs that she required her first transfusions. But she had had low platelets for quite a while prior. And lower WBC & ANC. And rbc. When we found out Emma was group A, we were excited at first. We thought it was the "good" group. We asked Blanche Alter (expert on it) when we were at Camp Sunshine. She popped my happy bubble. She said group A is vast in numbers (for FA) as well as vast in outcomes. Some need transplants very young, some make it into adulthood. Some not needing transplants at all. But she said there was no way to know. Each child is different. Obviously Emma is not one of the ones who is doing fine with counts! Anyway, since she burst my bubble, I thought I'd burst yours (totally joking! Not trying to burst your bubble. I actually wasn't sure whether to say what Blanche said or not).

    Hope you have fun on your vacation! :-). I can't edit this for some reason, so I hope I made sense.

  3. Teresa,
    Thanks! Don't worry, no bubble bursting damage done! :) That was mostly wishful thinking. Like you said each child is so different you never know what is going to happen. I think we are mostly happy she is an A just because that is where the most success has come from the IVF PGD. If she was a different group we may not be able to do it which would be a huge disappointment since we are so committed to doing it as soon as we have all the info. we need. Part of Macy's blood draw last week was for Dr. Alter's study. We are thinking of going to Camp this year if it is not in the middle of an IVF cycle. Hopefully we will get to meet her if we go.

    Your Emma (plus the 4 other kiddos) are so cute! She seems like she has quite the sense of humor with her silly faces she does in your pictures! They must all be a riot!

    We are so excited for vacation...can't wait to see Macy's reactions to everything!