Friday, August 2, 2013

Status Quo...again

It's been quite a while since I've posted - so I thought I'd make an update in the same format as my last post.  

Autoimmune Neutropenia - Morgan's neutropenia is still active but fortunately she has the type that she will probably go in remission from - we just don't know when.  Instead of three injections a week, Morgan gets daily injections now which is helping a lot with her bone pain.  Apparently, the bone marrow expands and contracts with the Neupogen and the three larger doses made her moody and we were having to do motrin/tylenol daily.  Fortunately now with the daily injections, we aren't having to do pain killers all the time.  The smaller dose also doesn't sting as much.  There have been a couple times that we have  taken Morgan off the Neupogen to see if her body could sustain normal white blood cell counts.  She was much more content and in a better mood but unfortunately her ANC went back into the severe range.  At our last hematology visit, our hematologist mentioned this could be something she could have until she is in adolescence.  I certainly hope that is not the case but its is a much better alternative than other diseases she could have.  We still do weekly blood work but we have gotten to know a lab tech that Morgan loves named Serenna.   She is a Godsend!

Neupogen - I have a love/hate relationship with Neupogen.  With it, Morgan does not get mouth sores, she is protected enough to be around other kids and goes to MDO twice a week in the spring and fall (MDO is her favorite thing and she is our little social butterfly).  On the other hand, Neupogen causes her to be nauseous or somehow causes her not to eat much.  I have talked to two pharmacists and other moms of kids with AIN that have told me nausea is a common side effect.  Unfortunately, our hematologist thinks the Neupogen has nothing to do with her eating but that's a whole other story.  >: /  Morgan still eats no fruits and vegetables and in the last two months has dropped all meats.  I'm concerned because two weeks ago she stopped eating cheese.  Fortunately, she is getting protein and fat from milk so that's good.  I have her on supplements to augment the nutritional gaps, which include a probiotic, fish oil, and a vitamin/mineral liquid supplement.  My mother-in-law Kathy has been kind enough to buy us an antioxidant juice drink which we believe is helping her levels.  All of these things are a challenge to get into her but I feel like proper nutrition is important for her to reach remission.  Also, Morgan is not a happy camper when she hasn't eaten as the case with all 2 year olds!

Spiritual Growth - God is good.  I know that Neutropenia plays a role in making Morgan who God wants her to be.  I know that with my head but at times I have trouble embracing that in my heart.    As I said in my last post, I have never been closer to God and he daily trains me to rely more him especially in my weaknesses - and there are a lot of them!    I still really enjoy writing my blog www.theupwardcall.com .


Part-Time Job - I'm still doing And Sew On's social media and love working with Jennifer.  She is such an inspiration to me.  I'm also going to start doing bows again to help with our budget a little more.

Jeremy -  My better half is doing well and puts up with me as usual.  We just celebrated our 10 year anniversary.  Hard to believe!  I don't deserve him and probably never will.  He is such a good husband and daddy.   Morgan and Daddy go to look at airplanes at the airport and also go look at puppies and kitty cats at the air port on a regular basis.


Prayer Requests - Please keep us in your prayers as Morgan's neutropenia is still a mental and financial struggle for us.  I struggle a lot with the stress of Morgan not eating.  All in all, we have come a long way since last year at this time and we are very blessed.  Thank you for your prayers and support.  Above all, pray that Morgan goes into remission soon, but that God is glorified through her neutropenia in the meantime.