Looking Up!

Morgan just turned 18 months and is a real ham.  The other day Morgan had  so much fun playing in the dirt and with sticks outside.  Then she wanted to play in the dog water.  I got her to come in and she went straight to my makeup table.  She sat there and opened my blush compact and put blush on both cheeks by herself!  So, I guess she is a girly girl and a tomboy.  My Morgan has quite the extroverted personality.  When we go to our weekly blood drawers, her game is to wave at as many people as possible as they walk by.  She also has a temper and I can't imagine where she got it from.  :)  When she gets mad she pulls her bow out of her hair and throws it on the floor.  If I don't see her throw it on the floor, she picks it up and throws it again to get her point across.  She is really something else and I just do my best not to laugh in those moments.

Morgan’s ANC went down to 200 last Friday which is not good.  However, we did injections three days in a week this week and now it is 17,000!  It is great to know that her body is very receptive to the injections.  Her hematologist switched her to getting four injections a week but hopefully we will get down to 3 again soon.  He said it is just a process of trial and error to get the proper dosage.

Our new protocol for her getting sick is that if her fever gets to 100.4, we are to call the hematologist.  Depending on her levels at the time and other symptoms, they may tell us to either wait a few minutes to see if it goes down, go to our pediatrician, go to see them in Temple, or go to the ER.  So, we just take her getting sick on a case by case basis.  This is much better than before she was on Neupogen where we had to go straight to the hospital in Temple if she ever got over 101.  However, I’m pretty much scared to death about her getting sick.  I know it seems silly but my biggest fear about her going to the ER is the IV splint.  They have to put an arm splint on toddlers when they get an iv.  Morgan goes BALLISTIC with even a band aid so I don’t think she will handle an IV well. 

For now, we are keeping playdates to one-on-one and only one or maybe two a week.  Also, she can’t be in any enclosed areas with a lot of kids so the church nursery is not an option.   This new careful lifestyle definitely adds a new level of stress to most things we do but all in all we are SOOO fortunate that she doesn’t have one of the other forms of neutropenia.  I always tell myself that Autoimmune Neutropenia is merely an inconvenience considering what some other families are going through.  This has been a very eye-opening experience.  Every time we go to the hematologist, we see a child getting chemo.  We are SO fortunate!

Overall, things are looking up and we have come a long way in the last couple months.  Kristy and I are meeting once a week and it’s nice to talk with someone that can relate.  We were sitting at Jason’s Deli last week and I heard a kid behind me with a horrible cough.  I gave her a look like “oh crap!” and she started to laugh.  Then we started talking about lifespans and incubation periods for various bacteria.  It was nice to converse with someone that is as OCD as I am these days.

Also, I started a Facebook page for Autoimmune Neutropenia.  It only has 9 members but I’m hoping that I can be encouraging to some moms that are just now finding out about their children having this. 

Jeremy also likes to remind me that since Morgan has been on the Neupogen, she has never slept so well!  This is the first time ever that she has slept through the night consistently.  It’s pretty stinkin’ amazing to get some real sleep!  Also, Morgan is obviously going to feel better when she gets more sleep.

Here are some recent pictures of my baby.  Enjoy!