Well, I guess the adage that “No News is Good News” applies
to our blog. Things are going great
overall and Morgan has been doing lots of fun things now that her ANC is high
enough with Neupogen. Morgan is at a
really fun stage at 21 months. She doesn’t
talk a whole lot but she can repeat most words back to me. I have caught her saying a couple of two-word
phrases too like “Bye KAY EE” (Bye Katie).
She is really something else and LOVES time with her friends.
I was definitely on the fence about whether to start one day
of MDO this semester. I just wasn’t sure
how she would do resistance-wise but knew she was ready socially. So, I put an email into the MDO director the
weekend before it started for Wednesdays.
She emailed me back and said she had just had one cancelation in Morgan’s
class and for Morgan’s day. Taking this
as a God-thing, we went ahead and signed her and she absolutely loved it. She even slept on her nap matt which
absolutely amazed me. Her BFF Adalyn is
in her class too so that makes it even more fun and brings me peace of mind
knowing she has a familiar face in her room.
I think if Morgan had it her way, everyday would be MDO day.
Things are starting to become more normal although we aren’t
completely there. Morgan had stopped
taking naps for a while and then started back up. Then she stopped again a few days ago. It was obvious she was exhausted but just could
not sleep. I called her hematologist and
we got her blood results back that her anc was very high. He said that she probably couldn’t sleep
because of some bone pain. So, we
lowered the dosage. Hopefully, it doesn’t
go too low and this will be a better combination of a higher frequency and a
lower dosage for her. Regardless, she is
going from .21 ml of Neupogen to .15 every other day. That’s a pretty good jump and I like that we
are moving in the right direction. The
Neupogen has been a God-send but it’s an awfully big drug for such a little
girl. The less we have to use the
better!
I have started leading an Inneract group this week and we
are doing Priscilla Shirer’s Jonah. Mama
even came and is in my group. J I am also on the Women’s
Ministry team at church. Wanting to get
back into ministry was like an itch that I really needed to scratch. It feels get to start the process. On the other side of regaining normalcy are
some health issues of my own that we are trying to work on.
I mentioned in an earlier post that I have started a facebook page for AIN moms. It is up to almost 30 members which isn't a lot but its provided a source of feedback and encouragement. I have also gotten to share about how God has worked and hopefully provided some support to newly diagnosed parents. It has made me aware of how fortunate we are. We have never ever been to the hospital while some of those families have been been dozens of times. I would say the average is about 6 times. In spite of Morgan's levels being the lowest I have heard of, she has been able to mount a response somehow. God has really protected her, especially in the six months before being diagnosed.
The whole premise of the Inneract study on Jonah is that
often life’s interruptions are God’s divine interventions. This has really hit home with me as far as
Morgan’s Autoimmune Neutropenia. As you
know, I am a habitual planner and this didn’t fit very well into my plan or my
plan for her. However, I know that God
has a plan for all this. I put on a
happy face most of the time and have gotten good at it. I remind myself that fortunately, we have
MUCH more freedom than we had before and I am not nearly as stressed about
germs. For example, as I write this, she is playing in the dirt with measuring cups and spoons. I never would have let her do that 2 months ago. Three months ago, we hardly went outside! Because of the injections, she has also not
had the recurrent MRSA infections on her skin and the deep sores in her mouth. She even sleeps through the night most nights now(Thank
you Jesus!). In the big scheme of
things, things are much better. God has told me more than once that He knows the plans He has for her and that he will
not harm her – that she will come out of this fine. I know that in my mind but on some days my
feelings don’t always come face to face with that promise – It so frustrates me
that she has bone pain, I hate seeing her get injections, I can’t stand taking
her get bloodwork weekly, and I’d do anything to trade places with her as a
human pin cushion.
However....I try to remember that when our emotions haven’t gotten on board with God’s
plans, that is where faith comes in. The latest statistic I heard was that 90% of
children grow out of this by age 5. That
is a really good statistic and we have already come a long way. However, I’m trying to remember that faith
begins where probability ends and we might even see remission before then. One day I will look back and see this fully
as a Divine Intervention instead of an unfortunate interruption. God has some big plans for my little girl!
Well, I guess I better give Morgan a bath as there is now more dirt on her than in our backyard. At least she didn't try drinking out of the birdbath today. :)
