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.

5 Months

Morgan Likes:

Giggling at Daddy and Mommy, watching her puppies, going on walks and sitting up!

Morgan Dislikes:

Laying down, Bottles, pacifiers, boredom, and the Roomba.

What’s New:  Morgan just started sitting up.  She is not much for rolling over still although she can do it.  She enjoys sitting up so much that when you lay her on her back, she tries to curl up in a crunch position until you aquiesce and sit her up.  Her hair is growing quite a bit and it is long enough to be able to mess up.  She has graduated from headbands with bows to bows with clips.  Her eyes are STILL blue to my amazement.  If they stay blue then I think that trait is from Jeremy's mom and my dad since Jeremy and I both have hazel eyes.   We went to Sunday School for the first time on Sunday and I just went and fed her in between class and the service since she is more hungry in the mornings.   Morgan has developed a liking for prune juice since we had some constipation issues when we started solids.  Now we are taking a break from solids and hoping to get back on the right track.  I miss the days where she slept 7 hours straight.  Last night she got up twice (12:30 and 4:30) and that is considered a good night.  She is teethign so I'm sure that is not helping.

What Morgan Plays With:

She enjoys her little stuffed monkey that wiggles.  She also likes to play with Mommy's hair and Daddy's glasses.  She still enjoys the jumparoo and is getting better at actually bouncing.  Morgan laughs and grins every time one of the the dogs approaches her.  She also likes to laugh when someone else starts laughing.  She and I could giggle back and forth for hours.  She is really something else!

What Morgan Eats:

Milk, milk and more milk since we are taking a break from the solids.  She took my milk from a spoon for the first time last week!  (She is definitely stubborn but she gets it honest.)

What Morgan Says:

Morgan likes to "sing along" and is starting to imitate noises I make.  

How Morgan Spends Her Time:

Every morning Morgan usually wakes up at about 7:00.  She likes to be fed first thing and then is in a good mood afterwards.  Then we spend some time talking and singing songs.   We take a walk around the neighborhood before it gets too hot.  She also does a weekly playdate with her BFF Adalyn and we have our SS class playdate on Fridays.  Last time, we got to feed ducks at a pond.    She will usually take a short nap at about 3:00.  When Daddy comes home she sits at the table and watches us eat.  I do our bedtime routine starting at 7:40.  Apparently, 8:40 is the magic time for her to be able to go to sleep for the night.  We had her sleeping in the crib on a sleepwedge but since she was getting up so much, I went back to the carrier in the crib.  I almost wonder if she has had some reflux since she does so much better sleeping at a pretty steep angle.  For now, I am getting her out of the habit of nursing her to sleep and then we will work on sleeping on the wedge again.  I am learning to prioritize and take one thing at a time.  

It is hard to believe that our sweet girl is already 5 months old! Sunday is Baby Dedication and we'll have lots of pictures to post.

A cool front came in a couple weeks ago and Pop Pop got some good pics.

"Laying down is for babies!"