Thursday, September 13, 2012

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.  :)

Sunday, July 22, 2012

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!



Monday, June 25, 2012

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.

Sunday, June 3, 2012

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!





Saturday, May 26, 2012

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.



Monday, May 7, 2012

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.”  

Sunday, April 29, 2012

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!