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.

Spilled Milk

It's 3 a.m. and Morgan is up because her milk spilled on her pillow.  Last March at this time, I was up because  Morgan had her first very painful neutropenic mouth sore - although we didn't understand what it was at the time.  What prompted my post at this hour was browsing over old facebook posts from last March/April and realizing how far God has brought us since that time.  Before reading those posts a few minutes ago, I was in a crummy mood about having to get up with her.  Now I realize how much better our lives are now as now those mouth sores are just small scars.  In retrospect, there is definitely no use in crying over spilled milk.  ;)

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.  Morgan gets injections 3 times a week and bloodwork once a week.  We are averaging about 2-3 visits to the pediatrician a week as we stay on top of bugs.  We are very blessed that she has gotten nothing more than a cold or virus since starting injections.  That is a HUGE reason to be thankful.   We are also very fortunate that Morgan has never been to the ER.  I started an AIN facebook page with over 50 AIN moms and I haven't heard of another kid that has never been to the ER - most have been over 10 times.  In April, we will do another antibody test to see what the status is.  Her last two weekly blood tests showed her ANC was 2300-2500 which is in normal range.  The Neupogen injections are a Godsend.  When we started this process, her ANC was 0, giving her no protection against the bacteria on her own body.

Spiritual Growth - My walk with the Lord has grown immensely through this trial.  He has helped us every step of the way.  I didn't expect for Morgan to be able to even do playdates with friends at this point and now she goes to MDO (Mother's Day Out) twice a week.  God is SO good.  I have started a devotional blog called The Upward Call and I love writing it.  God is faithful to give me something new each week.  I feel like I should write some sort of spiritual synopsis about how far God has brought me but its just not happening at 3am.  So, I'll sum it up by saying that God is amazingly gracious and has led us along every step and bump in the road in this journey. He is SO God.

Mother's Day Out - Morgan is quite the extrovert to the point that her self-appointed role is to be the class greeter, hugging every classmate as they arrive.  That makes me a little nervous from a neutropenic standpoint but she has done so well and the shots are doing their job.  I have a lot of faith in her teacher Brooke who is also a fellow germaphobe.  Morgan absolutely loves going to "school' and as this Spring Break has proved, she is not a happy camper when she can't go.

Women's Conference and Women's Ministry - I am planning a Women's Conference on April 20th, which interestingly enough, is a year from Morgan's diagnosis.  The conference is entitled From Fear To Faith and the theme verse that God laid on my heart is Isaiah 41:10, "Do not fear, for I am with you.  Do not be dismayed, for I am your God.  I will strengthen you, I will help you.  I will uphold you with my righteous right hand."  I'm excited to how God will use the conference and my prayer is that our speaker will be God's mouthpiece to every woman there.  A few months ago I became our church's Women's Ministry Director.  I am very excited about this role and how God is leading.  There are some amazing women on our team and I'm blessed to serve with them.

Part-Time Job - Due to the expenses of Neupogen, we came to the conclusion that I needed a part-time job.  God provided the PERFECT opportunity.  I am working at And Sew On and the owner is an amazing Christian lady that goes to Central.  I am basically doing their social media from home.  I am really enjoying it!

Jeremy -  My better half is doing well and puts up with me as usual.  He loves his job at Gessner Engineering and this year became his engineering team's lead engineer.  They are getting a lot of projects in which keeps him out of trouble.  Jeremy continues to be an amazing husband and daddy and is always a big help.

My Parents - Baaa (like the lamb) and Pop Pop have lived in their home in College Station for a year now.  It is hard to believe and I don't know what I would do without their help.  We go over there regularly and Morgan enjoys playing with their puppy Holly.  "Hotty", as Morgan calls her, is a five-month old Miniature American Eskimo puppy. She is a really sweetie but is a little stubborn when it comes to potty training!

Prayer Requests - Please keep us in your prayers as Morgan's neutropenia is still a mental and financial struggle for us.  I think I have a layer of stress that normally wouldn't be there because of her disease in general, her shots, blood draws and dr's appointments.  This puts stress on our family as a whole.  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.

Morgan is 27 months here.

Life's Interruptions

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.  :)

Social Butterfly

Now that Morgan's levels are stabilized with three 0.18 ml injections of Neupogen a week, Dr. Grayson told us, and even encouraged us, to get her around kids more.  I asked how her immunity compares to a kid without Autoimmune Neutropenia.  He said it is as good or better and explained that the poison that kills bacteria in the blood is stored in granules and with the Neupogen, supposedly her poison is more lethal to bacteria.  He said she will still get viruses like any other kid until her immune system builds up the memory in order to fight them but she should have much better immunity against bacteria than previously.  (Neutrophils' main role is to kill bacteria).  SO, our new protical  if/when she gets sick is to get her into our regular pediatrician when she has a fever over 101.  Then, they can give her antibiotics and give her a bloodtest.  That was the best news we have heard in a while!

The irony is that if her ANC (absolute neutrophil count) levels had not been so low in the beginning, she would not have been a candidate for the Neupogen.  About 1/100,000 kids have AIN and I would estimate that less than 10% have levels low enough to be on Neupogen.  The Neupogen has really been a blessing because its allowing us to do some things that we wouldn't have been able to do.  We are extremely blessed - first of all that Morgan does not have the type that can be a precursor to leukemia AND many kids with what Morgan has have already had several trips to the hospital.  Even with her extremely low numbers (0 at one point), God has kept us out of the emergency room!

Our routine every night as I give Morgan her bath is that I pray God will also wash away the antibodies that are killing her white blood cells.  We are so thankful that she has the type that she WILL go into remission.  The timing is just up to God.

I have started an Autoimmune Neutropenia facebook page for parents of kids with ain.  There are only about 20 members but my goal is to be a source of encouragement and information.  It's so hard at first because there are very few with this disorder.  Also, I have found that many moms can be very discouraging as they don't trust their child's doctor or ours for that matter.

We are both becoming more social, especially Morgan.  She has been to Inneract childcare twice.  The first week she went around giving all the other kids a hug and kiss.  Last week, a friend of mine said she heard a little girl shreaking excitedly.  Sure enough, it was Morgan shreaking for joy and clapping her hands.  She also likes to show them her dance moves.  Morgan is such a little extrovert and I'm glad she can start to get around kids again.  She has such a loving personality as she always gives us kisses and says "I-ya!" which is how she says "I love you."  She has already cut through two of her two-year molars so that hasn't been much fun but at least there are only two more to go.

I'm also enjoying my Bible study and will actually get to lead one of the women's small groups in the fall.  I have really been itching to serve in ministry again and it is something I have missed.  With that said, I'm no longer going to be selling hair bows on etsy.com or facebook.  It was a great way to earn some extra money while we are stuck in the house, but its time to move on.  Morgan will of course have the cutest hair bows in town!

My parents are officially moved into their new home in Woodcreek, just north of the new hospital.  The house is absolutely gorgeous and its pretty surreal that they are there.  Their house has probably more trees than any other in their neighborhood so the back yard is a bird sanctuary of sorts.  Of course my mom loves that!  Their yard and house has already been host to three different nests in the last couple months - barn swallow, mourning dove and wren.  Needless to say, the yard is very Lumberton-esk but not nearly as hard to mow.  God is definitely in the details.

Other than the obvious benefits of them being here to spend time with Morgan, we have also inherited some of their slightly used appliances that were either from the rental house or their new home.  It has been SO nice to get some new appliances in.  Our oven was original to our house and wouldn't even maintain temperature so now we have a much nicer one!

Due to Milk Spill 2012, we had to pull up the carpet in Morgan's room. Basically, a sippy cup of milk was left under her crib and spilled.  After lots of attempts to get the smell out, we gave up and I replaced it with the same flooring in the rest of our house.  It was definitely time to get the old carpet out of there.

So, we have lots of exciting changes in our lives.  Hopefully our next post will include details on getting Morgan out even more.  Thanks for so much for your continued prayers!

Face to Face

Black and white images streamed through my head as I tried to remember every detail of what had flashed on the screen the previous day.  The hand I would one day hold while crossing the street, the foot that I would tickle and the little back I would pat: these were all visions that I eagerly anticipated.   As telling as that moment was and as fortunate as I felt to have had it, something was missing.  I began to bite my lower lip as I always do when I get impatient but suddenly my thoughts were interrupted by a smiling nurse calling my name.  Pleased I wouldn’t have to clock anymore time in my obstetrician’s waiting room for the week, I followed her to the ultrasound room.  I was about to see the missing piece of my puzzle!

The day before, Jeremy and I had gone to get my 20-week ultrasound to find out the gender of the baby.  As rookie parents, we were so very relieved to hear the nurse finally tell us that everything looked as it should and our baby was healthy.  Then came the moment of truth that we had been waiting for.  To our surprise, she told us our baby was actually a “she”!  For some reason, we thought Morgan was going to be a little boy but of course we were overjoyed that in fact we I would give birth to a baby girl.  Of course, this put a kink in my plans for our son to become the next “Billy Graham” but of course God has even better plans ahead my Morgan.

As much as we had enjoyed seeing our little girl for the first time, she would never turn her little head to the correct angle to catch a glimpse of her face.  I told Jeremy how frustrated I was about missing this important “detail”.  So, my impatience got the best of me and I made another ultrasound appointment for the next day.  This time I was determined to see my daughter’s face for the first time.

                                       ___________________

In Psalm 27, David writes: “You have said, ‘Seek my face.’  My heart says to you, ‘Your face, Lord, do I seek’.”  Earlier in verse 4, he writes “One thing have I asked of the Lord, that will I seek: that I will dwell in the house of the Lord all the days of my life, to gaze upon the beauty of the Lord and to inquire in his temple.”

 I always wondered why David used the word “face” instead of just referring to the Father directly or to another part of God like his “hand”.  Why is it so important to see his face specifically?  The answer came to me as I sat in that waiting room.  I kept wondering why I was so obsessed with seeing the face of my little girl.  I certainly wouldn’t have made another appointment if I hadn’t seen her foot or an arm. However, I realized it’s a person’s face that makes them uniquely special and different from any other individual.  One notices new characteristics about someone as time is spent in their presence appreciating their very countenance.  Their specific attributes are often never detected upon first glance, but are often observed as their face becomes more familiar.  In Psalm 27, God is telling David to seek His character and favor – to seek the very essence of who God is.  There is no fault in seeking God’s hand by seeking His blessings or direction, but here God wants David to specifically seek His face, to gaze up the beauty of His Godness.  To seek God’s face means to immerse oneself in His character and to meditate on His precepts. 

John 14:21 says “Whoever has my commands and obeys them, He is the one who loves me.  Whoever loves me will be loved by my Father, and I too will love Him and show myself to Him.”  In other words, if we love God, we spend time with him and in turn God reveals more and more of Himself to us.  God must reveal himself if people are to see his face.  In Job 34:29, the Greek word for “revelation” literally means “removing a veil from one’s face”.^[1] That’s why it is so vital to make time to sit in His presence and mediate upon His Word.  Time with God can’t be rushed like every other aspect in our lives.  When we are in a hurry, our minds flutter back and forth between God and the tasks on our “To Do” list.  However, God wants us to push back the demands of life to create time to rest with Him.  He demands this time of focused attention to bless, strengthen and equip us for what is ahead.2  There is no wiser investment than making a daily appointment to spend time with God.  He faithfully rewards those who seek Him by showing them more and more of His character.

                                          __________________

The second ultrasound appointment proved that Morgan once again was not in the mood to get her picture taken.  She seemed to squirm in every possible direction but she wouldn’t lift up her head towards the “camera”.  The nurse said “Well, it looks like we just aren’t going to see her face until she is born.”  It was right then that Morgan happened to lift her head up suddenly in time for the nurse to snap the picture she needed.  Her timing was perfect and so was what I saw.  I realized I was looking at the face I would stare into for the rest of my days.  It was my first glance of what would turn into years of long gazes as I would see how God would grow her into the woman He wants her to be.

I’m sure to some that the ultrasound picture was unrecognizable.  However, as I have looked at this face over the last 18 months, it becomes clearer to me who my daughter is – a true blessing from our Creator.  The same can be said about gazing upon the face of God.  Although our first glance might not have been so clear, we grow so much closer to the One who knows us better than we know ourselves.   The Father of Abraham, Isaac and Jacob is the same yesterday, today and forever and He has immeasurable blessings for His children.  He wants them to seek a relationship with Him by making a regular appointment to seek His Face. 

   

---

^[1] Manser, M. H. (1999). Zondervan Dictionary of Bible Themes. The Accessible and Comprehensive Tool for Topical Studies. Grand Rapids, MI: ZondervanPublishingHouse.

² Young, Sarah. (2010),  Jesus Calling, Grand Rapids, MI: Thomas Nelson, May 30.

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!

Ups and Downs

Here is an overview of Morgan’s ANC (absolute neutrophil count) with the Neupogen injections.  For those of you that just tuned in, neutrophils are the most prominent white blood cells that serve as the front line of defense against bacteria.  Severe neutropenia is 0-500, 500-1000 is moderate and 1000-1500 is mild.  A child under 2 has a normal count when it is over 1500.  Neupogen is a drug that causes her bone marrow to work in overdrive to make more neutrophils to compensate for the ones that her antibodies are killing off.  Morgan gets injections on Monday, Wednesdays and Friday evenings and we do bloodwork every Friday morning.  Dr. Grayson wants to keep her counts between 1000-1500.  Here are her counts from the first weeks of Neupogen:

Friday before Neupogen - 220

Week 1 – 1581

Week 2 – 2500

Week 3 – 300  (last Friday)

Wednesday morning of this past week – 600 and she was very irritable

Wednesday evening– started new vial of Neupogen   

Thursday – great mood and very content!

Friday(yesterday) – 4500 and very irritable

Needless to say, we were very discouraged on Monday when we found out her ANC was only 300.  We think she had a little stomach bug which could have lowered it.  She was really irritable Wednesday morning so I took her to the pediatrician to have her checked out and to have bloodwork done.  She checked out fine and her ANC was 600 something.  Dr. Grayson said this isn’t where we want it but fortunately it is moving in the right direction. 

I was so encouraged when she was in a wonderful mood this Thursday.  However, she was in a horrible mood on Friday so I thought her ANC had dropped again.  We were very happy to hear last night that it was actually very high at 4500!!!  This is actually too high but at least we know the Neupogen is working.  The high number also explains her recent irritability because Neupogen can cause bone pain and headaches.  We are giving her motrin to help with this.

Obviously that is an extreme jump from 600 on Wednesday to 4500 on Friday and we think we know why.  I found a new friend in College Station whose toddler has tested positive for AIN also.  Actually, she found me through the Baby Center neutropenia board.  It is really a God thing that we connected.  We had dinner on Tuesday and are going to get together once a week.  Kristy is very well-read and has a good understanding about the latest research and challenges concerning kids with Autoimmune Neutropenia.  She told me that there is some controversy over whether to use the 1ml vials of Neupogen more than once.  The nurse at the hematologist’s office told us to use the 1ml vials over and over until each is gone and showed us how to use it “sterilely”.  However, Kristy showed me how the company clearly states that they are “one-time use” vials since they contain no preservatives.  My question was then if the reasoning was to prevent bacteria from entering the vial or because the Neupogen becomes less effective.  I called the same nurse the next day and she assured me it was only for sanity reasons and said the way she showed us to administer the medicine would keep things sterile.  

However, I talked to Dr. Grayson that evening who said that using the vial multiple times could actually decrease the effectiveness of the drug.  For Monday’s dose we were at the end of a vial, so we started a new vial on Wednesday and that explains the high number on Friday.  Therefore, the nurse was incorrect which caused several of Morgan’s injections to be ineffective or not as effective.  If Kristy hadn’t pointed that out to us, we would have kept wondering why her numbers were going up and down for no reason!  I’m so grateful to her because I would have been such a basket case.

The drug is very expensive which is why wasting the rest of a vial is an issue for a lot of people, especially for those without insurance.  In Morgan’s case, she only gets 0.17 of a 1ml vial.  A box of 12 vials (4 weeks worth using 3 a week) was $3400.  That comes to $283 an injection.  Fortunately, our insurance is paying most and we’ll of course do whatever we need to for our baby girl to be healthy and happy.

It is SOOO good to know that the Neupogen is doing its job.  We go to Temple on Tuesday for our monthly appointment.  He will probably tell us to lower her dosage or at least that is what we are hoping.  J  He also told us that as long as we fill up three syringes at once on Mondays, they will be effective for Wednesday and Friday’s dose.  I’m not completely sold on that idea since the Neupogen company clearly gives other instructions, but I will ask him more on Tuesday.

Jeremy just said to me how far we have come in the last few months.  We figured out why she was sick all the time.  We got a diagnosis.  We found an effective treatment and as of a few weeks ago.  Morgan is sleeping through the night. And more importantly, we know that she will spontaneously go into remission.  We know that this will come to an end.  God has been so faithful to assure me through this process – through His Word, through people, through songs, etc.  He is so faithful and He has brought us a long way.  One thing is for sure, our little girl is so special and he has some amazing plans ahead for our Morgan!  Please pray she goes into remission soon, and that we find the right dosage so she feels better.

Reflecting Back

Morgan had bloodwork done on Friday to see how well her body is responding to the Neupogen injections.  In spite of getting poked twice, she did a great job!  I think she is getting used to all the blood draws.  We got a call from the hematologist Friday evening.  Dr. Grayson said he “was very happy to say that her neutrophil level is 1580 and her overall white blood count is 9000.”  We were ecstatic to hear that especially since it was 0 a couple weeks prior.  This is exactly where he wants her neutrophil level and so we are going to stick to the same dosage for now.  She will do blood tests weekly as we watch what her levels are doing.  Hopefully in a couple more weeks , we can start having playdates again. 

This whole process has been somewhat isolating.  We haven’t been to church regularly in the last year because Morgan was getting sick every time she went to the nursery.  This is a stark contrast to my life when I was pregnant since I worked full-time at our church.  Also, we haven’t had playdates with friends in a couple months.   I think God has done that partly to force me to draw closer to Him.  I’m just sorry that my little extrovert can’t see her friends these days.   I look back and know now why I didn’t feel comfortable taking her certain places or why I have been obsessive about germs.  That’s the kind of mother Morgan needed and God is so faithful to speak to us through our “motherly instincts”.   It’s nice to now understand why she was always getting sick and that I wasn’t just an “overprotective first time mom” as someone told me.  I can even see how the milk allergy and reflux played into this because I think it was good preparation for the three of us.  Now, that I look back, I can say to God, “Oh, I get it now.”  My heart longs to serve Him in some capacity but I understand now why God has wanted me to focus all my time and energy on Morgan.  God is doing some exciting things and He has some really big plans for my little girl!


Morgan has had more energy than ever.  Her favorite activity is chasing the dogs with her lawnmower.  She starts laughing so hard she can't stand up straight.  Today she put on one of her shoes by herself and decided to walk around with one shoe on for a while.  I found out I have some thyroid issues last week, so hopefully the medicine kicks in and I can have more energy to keep up with her.  She says several words but also has her own language too.  We tell her "I love you" often and Morgan says I love you by saying "AYY-yah".  It's pretty funny and there is no doubt that is what she means.  She has also started to sleep a lot less and her nap has now moved to 3pm instead of noon.  She seems much more contented now that she feels better.

From 6 past blood draws from her old pediatrician, I calculated the ANC’s.  In August of 2011, she had an ANC  of 2500 which is outstanding.  Then, it kind of goes downhill from there.  I think she has had this since at least October of last year.  If that is the case, she has already had it 8 months.  So, I am starting to pray that Morgan goes into remission early.  I guess we would know by the weekly blood draw counts and another antibody test when the time comes.  I have tried to network with other moms of kids with Autoimmune Neutropenia.  There are about 14 active AIN moms on a Babycenter board I found and 3 of them have kids with anc’s low enough to be on Neupogen regularly.  Hopefully, I hear back from them as I have questions like “Will she get sick as often as she did before or will it just not be as severe or both?”  I guess I am interested to see what our new “normal” will be in a few weeks.   God has brought us a long way in a short time period and I’m sure He will continue to do the same.

During the past month, I don’t think I have ever heard the Lord speak more clearly to me.  It has been amazing how God has communicated to me very specifically through His Word. During the week we were waiting for her diagnosis, I literally felt as though God had a protective spotlight of his love and peace on me at all times.  I’ve spent years in seminary classes but I have learned more about His character in the last few weeks than any time in my life.  I could spatter off a whole plethora of verses that God has emphasized to me but the ones that are heaviest on my heart right now are 2 Cor. 4:16-18. “ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”  

Neupogen

On Friday morning, we went to see Dr. Grayson in Temple.  Morgan has been in a great mood this past week and has come a long way since our last visit to Temple.   She had a lot of fun playing in the exam room and looking at the animal pictures on the walls. 

Dr. Grayson explained that the Autoimmune Neutropenia is not caused by a lack of neutrophils being made in her bone marrow.  There is actually an antibody in her bloodstream that kills her neutrophils which is why her counts are so low.  Autoimmune Neutropenia occurs in 1/500,000 and there is no known cause.  Fortunately, he said she will grow out of this by the time she is school-aged and probably sooner!!! 

In the meantime, we will give her Neupogen injections three times a week.  The Neupogen causes her body to make more neutrophils to compensate.  On Fridays, she will get blood taken in town to monitor what her levels are doing.  Hopefully in a few weeks her white blood counts will be at a normal level.  Until then, she won’t be able to play with other kids and we just need to be really careful about where we take her.   We are so fortunate for the injections as her low levels can put her at a high risk for deep skin abscesses, pneumonia and mouth sores (which she already has had). 

The only negative side effect to the injections is that it can cause some bone pain and headaches.  She was irritable after her first injection but she has two incisors coming in, so it might have just been her teeth bothering her.  Pray that her levels normalize soon and that she doesn’t have any side effects.  Thank you so much!

We have a Diagnosis! :)

I was laying on my bed praying during Morgan's nap and unexpectedly, Morgan's hematologist called.  He said he already had the results of the antibody test.  He had some excitement in his voice when he said she is positive for the antibody.  That means that her bone marrow is creating antibodies that are attacking her neutrophils.  The reason her counts are so low is that she is making neutrophils but her body is killing them off before they can mature.   It is called Autoimmune Neutropenia or Chronic BENIGN Neutropenia.  The GREAT news is that she will grow out of this by the time she is school-aged.  In the meantime, Dr. Grayson said there are some injections we can give her to help her not to get sick so much.

This is such an answer to prayer that she does not have the more serious kinds that can lead to cancer.  We have SO much to be thankful for and God has been so faithful to us!  We are also overjoyed that we do not have to do the blood draws.  We go to Temple on Friday at 10:30 to find out about the injections and to find out more about the Autoimmune Neutropenia.  We are so relieved!!!  Thank you so much for your prayers.  This is a huge weight that has been lifted off our shoulders.  We can't thank you enough for your prayers, love and support!

Rough Morning

 I just found out her bloodwork still has not changed (0-70).  

  I'm so frustrated and upset.  I found old bloodwork that said that she had neutrofils levels at 2500 at nine months.  Also it said her levels were 700 just two weeks ago - april 12.  There was another set I found from several months ago that said her levels were 900.

Morgan's new blood draws have all shown so far that there has been no change in her neutrophil levels.  I just got a call them saying that yesterday's blood draw was 64.

I got copies of the old cbc's from upa and found out that there are at least three occasions that Morgan has had neutrophil levels over 500 in the past.  In August of last year (at 9 months) her counts were 2500, which is well in the normal range.  It also shows that her level was at 793 on April 12, 2012.  I told the hematologist this yesterday and he said "At this point we can probably  assume she doesn't have the congenital and that we are looking at AIN, cyclic or transient."  He said we just need to see what all the results show in the next few weeks.

I'm having a rough morning for some reason.  These low levels this week make me keep wondering if it is congenital. 

We find out at by the end of this week what the results of her antibody tests are.  A possible explanation for the low levels is that she has the Autoimmune type.  This is where the body kind of has an allergy to her neutrophils and are killing them.  This is actually not such a bad thing bc it always goes away by the time they are 5 years old at the latest.  Also, the injections can help in the meantime.  The antibody test might tell us this.  It has a high rate of false negatives.

Morgan has been on bactrim a lot in the past and I was on it a lot when I was nursing her.  This can also cause neutropenia.  I gave her two doses last weekend for the sore in her mouth because I was desperate.  I am wondering if that has anything to do with this.

Pray that I have a peace about this and that I can rest in what the doctor said.  We are so thankful that Morgan is in a great mood and eating well.

Neutropenia 101

I didn't find out a specific number for Morgan's neutrophil level on Friday but the nurse said the percentage indicated no change.  HOWEVER, I talked to Morgan's previous pediatrician yesterday afternoon.  It turns out that Morgan has had normal neutraphil levels in the past from previous bloodwork on at least 3 different occasions (over 500). She said it seemed to go up and down.  On Tuesday, the hematologist said that the Severe Congenital Neutropenia is when her levels from birth are not capable of going over 500.  So, he hasn't confirmed it, but from what he told us Tuesday, and everything I have read, it is pretty safe to assume that Morgan does not have the severe neutropenia since she has had normal levels in the past.  This is of course a HUGE answer to prayer and I definitely am breathing easier!

I would be remiss to tell you about this experience so far if I didn't tell you how God has embraced us as we wait on test results.  The morning after we came back from Temple, I felt like the wind had been knocked out of me.  I spent some time in the Word and God was faithful to show me that Morgan will make it through this ok, that he has big plans for her and that good things will come of this!  He didn't need to tell me that but He has been so faithful to comfort me through this process.

Please continue to keep us in your prayers.  Pray that Morgan does not get sick during the next four weeks of blood draws, bc if her fever goes over 101.0, she has to go to the hospital in Temple.  Pray that God comforts Morgan during the blood draws which are going to be in her arm, instead of doing the finger prick.  Also, keep Jeremy and I in your prayers as we need to be strong for her and trust in Him.  Thank you so much for lifting us up!

Here is a summary of the different kinds of neutropenia by most common first:

1.  Transient Neutropenia - Not Inherited. The neutrophil levels stay low for a certain amount of time and can be treated with injections before it goes away on its own.

2.  Autoimmune Neutropenia or Benign Chronic Neutropenia - Not Inherited.  This is where the blood's antibodies are actually attacking each other.  The neutrophil levels stay low for a certain amount of time and can be treated with injections before it goes away on its own, usually before age 3-5.

3.  Cyclic Neutropenia - Happens in 1-2/million.  Inherited.  My understanding is that she has it all her life but it tapers significantly at puberty.  This is where every 21 days she will have a 3-7 day drop in her neutrophil level where she will be susceptible to infection.  The injections make the amplitude of the sin wave higher and the waves shorter and more frequent.  With the injections, she would still have lows but she would recover faster than if she didn't have injections.  This is the one think she has based on her symptoms and the fact that my mom and I were in the hospital a lot as kids. http://www.medicine.wisc.edu/~williams/cyclicneutropenia.pdf

4.  Severe Congenital Neutropenia - Inherited. 1/million. Neutrophils don't go over 500 from birth.  We don't need to worry about this one.  :)

Blood Draw 1

Today is Morgan's first time to draw blood after the initial testing.  Basically, she will have her finger pricked today and then every Monday, Wednesday and Friday for the next 4 weeks.  We go at 2:30 today and Grammy and Pop Pop are coming along.  It probably won't be much higher than Tuesday because it hasn't been long enough.  However, if it jumps over 500, it automatically eliminates the most severe kind.  So, we are prepared for it to stay the same since it hasn't been long but God told me to be brazen in my prayers so we are praying for it to be over 500.  We will get the result back this evening or tomorrow.  If the level stays low, we still have to just hurry up and wait.  

Neutropenia

Basically, to make a very long story short....Morgan probably has a rare blood disorder called neutropenia.  There are different levels within your white blood count and the neutrofils are the ones that are the main defense against infection.  The test with Dr. Flippen showed Morgan had none.  There is no easy way to know if the 0 level was the bottom of a one week long cycle as in Cyclic N., or is just temporarily 0 with a couple other Neutropenia types OR permanently 0 as with Severe Congenital Neutropenia.  There are about 5 kinds or neutropenia. 

Best Case Scenario is that Morgan has one of the 4 temporary kinds that will just last a few years.  We would just have to be extremely careful about her catching things and she would have daily shots for a few years.  Our lives probably would not be all that different than they are now since we haven't been doign many playdates anyway.

Worst Case Scenario is that it is the Severe type which puts her at a very high risk of infections.  This is called Kostmann's Syndrome and it used to be that most did not live past their teenage years with it.  However, with dailyinjections (Gcs-f) most people live manageable lives as the shots help to raise the bodies neutrofil levels again.  I'm assuming its just finding the correct balance with the injections because its very variable on how much each person requires.  The bad news is that he said 25% of the people that get this type of Neutropenia, get AML ( Leukemia) from ages 5-15.  I read somewhere else online that the odds are 9%.

Basically, they took a lot of blood today and we are starting the process of ruling things out.  At the longest it will take 4 or 5 weeks to know exactly what she has.  If she gets an underarm fever of 101 or higher, we are to go directly to Temple and admit her.  Her dr. recommended going there instead of st. joes bc of the drama going on there with the med.  If she gets admitted in the next month, they will go ahead and take some bone marrow by putting her under and taking it out of her hip.  At that point, we'll know within 24 hours which kind she has.  We might still have to do the bone marrow test in 4 weeks to confirm other blood work.  He said that the recovery for that is nothing for little ones and that they bounce back really fast.  Of course they would put her under general anesthesia.

So, even if she has the worst kind, she can still live a manageable life as long as she does the shots daily.  Basically, with these shots, they build up her neutrophil levels so she can fight infection but we would just need to be vigilent if her fever gets over a certain level.  Its hard bc this disease is SO rare but from what I can tell, there are still people that go to college and do normal things, they just have to be careful when they do get sick.  In true Karin fashion, my first question for him was if she has Leukemia.  He said that with how the rest of her levels are, that the chance she has leukemia now would have to be very slight so that is obviously good.

For the next 4 weeks, we need to get the finger prick blood test 3 times a week to look at her levels over a scope of time.  This can be down here in town.  If her Neutrophil levels at any point get over a certain count,   it will automatically rule out the worst kind.  If not, it doesn't mean she has the worst kind, but we just need to wait and see for other tests.  In about a week we will get some results back showing if it is Autoimmune N.  This is a temporary kind also where the bone marrow is making antibodies that acutally attack the neutrofil.  This would be fixed with the GCS-F shots.  I told him she had been on bactrim for the mrsa infections and he said bactrim can at times cause another temporary form called Transient Neutropenia.  I then told him that I was on it a lot when I was breastfeeding her.  She hasn't been on the bactrim though in several weeks and he wasn't sure how much gets through breastmilk.  

Here is something I found online that kind of describes things: http://www.scner.de/handbooks/handbook_en.pdf

I have not handled this super well today but as I write this email I realize that Morgan more than likely will live a normal life.    As you can tell, I just want to know which she has so we can begin to manage it.  Please pray we find out something very soon and that I keep a positive attitude - that I won't be discouraged if her levels aren't rising like I want, in the timeframe I want.  Pray I stay focused on Him and how to best make Morgan as happy as possible during this time of bloodwork and tests.  Fortunately, her tongue scab came off yesterday and she started eating some this morning. Please pray that we handle this waiting game well.  

The Plague of 2011

 Well, this week has been a nightmare of sorts.  Jeremy got the stomach virus from one of his coworkers, then Morgan got sick, then I got sick, then my mom (Morgan’s backup Caretaker when we are MIA) got sick and then I got mastitis…for the 5^th time.  I won’t go into details but I can honestly say I have never remembered being SO ill.  Ok, now that my complaining is out of my system…onto better things.

This down time of illness has made me reflect on how much Morgan has grown in the past 9.5 months.  She is now crawling, pulling up, cruising, bending down to grasp things and yesterday she gave me a kiss for the first time.  It made this whole week SO worth it.   She’s  so funny when she kisses.  She doesn’t have the smooch down but it is definitely a deliberate kiss.  I am really enjoying this phase.  I have enjoyed the baby phase but it is nice that she understands me.   

Morgan is doing great with solids and I’d like to get her to the point soon where we no longer do baby food.  We haven’t done an official food trial with milk and soy yet but I am loosening my diet up finally and it seems that it hasn’t affected her.  I even had cheese and white bread the other day for the first time in 7 months!   Hopefully this trend continues.

Morgan has had more and more opportunities to be in the nursery lately.  Last Sunday, I went by to check on her and she was crawling around with the other babies and was stealing a toy from another little girl.  I cracked up because I expected her to be clinging to one of the nursery workers.  We have had fun seeing glimpses of her personality.  She is very head-strong and independent.   She is never hesitant to let you know what she is thinking and is always such a sweet girl….unless you are the other baby in the nursery.  J

Big Girl Food

I have started introducing Morgan to "real" food to see what she would do.  Below Morgan shows you her patented banana eating technique.  Since they are too slippery for her to hold onto, she squishes them between her fingers ands eat what comes out of the top of her fist.  She also ate a few little pieces of chicken too!  She likes eating food so much that she gave a big "Gig Em'!" at the end of her meal.  :)

7 Months

Now that Morgan is almost 8 months old, I suppose I should write her 7 month update…

Morgan Likes: Baby Food! (she ate 6 jars yesterday), her Jumperoo, her puppies, and playdates

Morgan Dislikes: Taking her reflux medicine, going to the doctor, the vacuum cleaner and having her mouth wiped

What’s New?  Morgan had her follow-up appointment with the GI doctor this.  He was very pleased that she is doing so well and eating so many solids.  She weighed in at 17 lbs. and 27 inches.  He said to keep her on the medicine and that we will see her in three months to start adding in some dairy/soy.

What Morgan Is Eating:  She has loved exploring the wonderful world of baby food and can really put it away.  Her favorite is sweet potatoes.   She has even started drinking water and some milk out of a sippy cup!!!  I have started making homemade baby food because we both gagged when we smelled a jar of chicken baby food. 

What Morgan Plays With:  She loves her jumperoo and gets very excited to the point it looks like she is doing River Dance when she is in it.  Morgan enjoys our reading time before naps and bedtime.  She loves bathtime and is no longer in her baby tub but has taken over Mommy’s bathtub.

What Morgan Says: “Ba, Ba, Ba, Ba, Ba…”  She now has four teeth and will sometimes grind them together which is pretty gross.

How Morgan Spends Her Time:  She wakes at around 8 a.m. and then takes a nap at around 10:30 and another at 3pm.  Her bedtime is at 8:30.  She is sleeping much better and is even in her crib now.  We have a pretty regular schedule where she eats solids three times a day.  I am trying to only nurse her after her solids so she gets filled up on those first.  She isn’t crawling just yet but she will roll from one side of the room to the other.  Yesterday I went out of the room for a second and walked in to find her pulling up on the tv cabinet.  Yikes…

Life is Good...

For the last couple months we took a refrain from most activities (including blogging) because Morgan was having lots of problems with reflux.  For about 4 weeks she was up about every hour at night.  Morgan has a milk and soy protein allergy which means that I avoid all dairy and soy products.  It turns out that it is common for babies with this allergy to also have reflux.  To make a long story short, we opted to see a GI Pediatrician because our general pediatrician wasn't super helpful in trying different medications that may help.  So, after seeing the GI Pediatrician in Round Rock, we found a dosage of medication that worked.  She started sleeping longer stretches but was still up quite a bit.  At that point, we had no other choice but to do some sleep training.  I have never been a proponent of letting her cry but fortunately it worked and wasn't nearly as dramatic as I thought.

I'm happy to say that she is sleeping from 9pm to 9am and get up only once at night to eat.  She is also eating solids 3 times a day (2-3 jars) and has her fourth tooth coming through.  She is even out of the bouncer at night and is in her very own crib.  Most importantly, her overall mood is better.  She is a very happy little girl during the day....unless I am making her take her reflux medicine.

My Strong-Willed Child

We had another rough night last night.  So, I took Morgan to a new pediatrician today to hopefully get some answers as to why she is getting up every couple hours at night.  Also, whenever she strains she seems to be in pain but she isn't constipated.  We went to see a doctor who is in the same practice as our previous pediatrician. 

I told her all about Morgan's background with food allergies.  Morgan also has a cold so she checked her ears and eyes.  Fortunately, she said they looked fine.  However, our little angel wasn't quite in the mood to be examined by the nice doctor lady.  She started screaming and flailing her hands in the air.  Before I know it she was in a full-blown tantrum all because it was not her prerogative to have her ears checked.  When the doctor was done, I scooped her up only to have her spit up all over me.  The pediatrician was so nice about it and said "Wow, she really lets you know what she is thinking, doesn't she?"

Basically, Dr. Tomlin told us that Morgan has reflux.  That would explain the pain when straining, the night wakings and why she can't sleep on her back flat. So, she gave us some Zantac and we are supposed to see if things improve.  I'm also supposed to stop nursing her to sleep (easier said than done) and put her on a sleep wedge instead of in her carrier.  Apparently  the carrier can cause her to slump making reflux worse.  So, hopefully these changes will help her to feel better and get this tired Mama some sleep.

She definitely wasn't phased too much by the "spit-up incident".  She was smiling and joining in on the conversation in a matter of minutes.  Dr. Tomlin even commented on how vocal she is for her age.  Then, on the way out my little strong-willed extrovert had to smile at all the nurses as we passed by.

Morgan is feeling better this evening.  This picture was taken right after she managed to somehow poop on the carpet.  She seems to think its pretty funny.