Tuesday, October 21, 2014

An Answer

Today we met with Chloe's Hematologist to review the weekly CBCs alongside the rest of the history we have gathered and were able to assess that she doesn't have cyclic neutropenia. Her counts were never normal. 

Instead, it appears to be Autoimmune Neutropenia. The good news is that her chances of growing out of it 18-24 months from now are very high.

We could start thrice weekly doses of Neupogen to boost her Neutrophil count, but since Chloe is overall quite healthy, we are going to hold off with the support of her Hematologist. 

A request is being sent to our insurance company to authorize gene testing to rule out cyclic and any possibilities of a genetic connection. 

For now, we continue to keep her healthy and watch for fevers. 

Back to play time and all the good stuff about being a toddler!

Thursday, October 16, 2014

It is a whole new world, again

It has been a wild three months since our last post.  Chloe turned one and since then, life has been a blur.

Walking, talking and a little brother on the way!  Our family grows to 4 in March 2015.

In addition to all of that excitement, we have had more doctor visits than we can count.  Chloe (very likely) has Cyclic Neutropenia: a one in a million blood disorder that causes her body to produce dangerously low counts of white blood cells, specifically neutrophils, at a cycling number every 3-6 weeks.

We are still in the diagnosis and discovery stages, but after multiple visits with a Hematologist at Phoenix Children's Hospital and monthly (now weekly) blood draws to check her counts, we are getting more and more data to support the diagnosis.  And it was all discovered through a routine lab test after her one-year well check.

If you know Chloe, you'd never think of her as a "sick kid."  She didn't even have a cold until she was 8 months old which was the first, and only, time she had a fever. Until last week.

Last Friday, she felt a little warm and looked a little off to me.  Her spirit was still there, but something just inexplicably looked different about her.  So I took her temp and sure enough, 99.8.  Technically a low-grade fever, but things are different now that we know what we do.  If she develops a temperature of 100.4, we must monitor it closely and regularly.  A fever of 101 means it is off to the doctor or Emergency Department.  So we took her temp an hour later and sure enough, it hit 100.4 exactly.  Every 30 minutes we took it again, and by 11 it was up to 101.4.

We called the Hematologist on call earlier in the evening, who advised to wait on Motrin/Tylenol and to head to the ED if it hit 101 so they could check her Absolute Neutrophil Count (ANC). Off we went to an experience so unfamiliar and terrifying to the new parents that we are.

By the time we arrived, it had reached 102.  Unknowingly to us, a neutropenic child is a high priority.  We were rushed to a room to be seen right away.  A dose of Motrin, poked and prodded, test after test sent off to the lab, and 5 hours later we were sent home with a diagnosis of a fever from no obvious cause and a 24 hour antibiotic shot, just to be safe.

The "normal" range for ANC for a child Chloe's age is somewhere between 1,000 and 1,500.  During all of this, her ANC was 759.  Comparably, this is on the high side for her; just three days earlier it was in the 200s and two weeks before that, 138.

This was of course on a weekend so a couple days later on Monday, we went in to see her pediatrician.  The fever continued, but with Motrin it never exceeded 99 point something.  They said that it may eventually reveal itself, but it could be something viral that they just can't identify.  We were starting to connect it to teething, especially since she continued to be her happy self through all of it.

Then on Wednesday, the fever finally broke.  All off a sudden, she broke out in a rash all over her diaper area, tummy, sides and even up her neck.

Back to the pediatrician we went and an answer! Roseola.  A very common virus for babies and toddlers.  Unfortunately it isn't the answer for her neutropenia, but at least this round is over.

We have learned so much and have so far to go.  It is incredibly overwhelming to think about life with a child with a diminished immune system.  Uptight house rules of shoes off, wash your hands, and no one over that is sick in the slightest.  Looking at everyday items, immediately seeing the germ potential and cringing inside.  Dreading the day they start school and are exposed to a plethora of viruses and bacteria.  Sick to your stomach about all of the news of Ebola outbreaks and the reality that it is in our backyard in Arizona.

The only saving grace is that she very well could grow out of this, possibly by the time she is only three.

For now, we continue to check her counts and collect as much information as we can and I do my best not to turn into too much of a Mama Bear, protecting her little cub from those everyday germs that everyone else can so easily handle.  I will say though, after the traumatizing and expensive week we just had, I just don't think it's worth it to worry about being "polite."

Wednesday, July 2, 2014

Family Pictures

In honor of Chloe turning one, we headed off to the Phoenix Zoo for a family photo shoot. Photo credit to Sweet Life Photography

Wednesday, April 23, 2014

How time flies

I cannot believe this little person has been out as long as she was in my belly (give or take a day or two). 9 months and 5 days old. 

Pregnancy feels like an eternity but this set of 9 months has flown by in a flash. She is the center of our universe and it is the most normal and happy my life has ever felt. The purpose she has given makes all of it make sense. 

Happily consumed with diaper laundry, developmental milestones, play dates, a tornado of toys and baby things, and a life that is planned around the happiness and well being of her. Our little chicken. 

Chloe is full of personality. Effervescent and infectiously happy. She loves music and songs, she will rock to any melody - even an unsteady beat of a makeshift drum. She always seems to have a toy and each hand, inspecting every detail before throwing them all around. 

She will laugh hysterically if I put the dummy in my mouth or I tickle her belly with kisses or my nose. Poppy makes her light up, especially if she gets to pet her belly. 

Oh and the squeals of joy when "Da" walks in the room!

We are on the verge of mobile independence. She rolls, shuffles and scoots backwards to get where she wants to go and is working on the transitions from laying to sitting to standing. 

Communication is fun! Chloe signs 4 things: milk, more, eat and change. No words yet, but lots and lots and lots of sounds. Once she figures it out, she is going to have a lot to say! 

So here we are, only 3 months until toddler. We'll be busy soaking up the baby ways while they're here and next thing we know it will be time to throw a party!

Friday, March 21, 2014

Food for fun until One!

Two months into the exploration of food and Chloe is definitely having fun!  And so are we.  We skipped "baby" food and went straight for the real stuff. "Baby-led weaning." A concept commonly practiced in the UK, where the term "weaning" means something very different than we are used to thinking.  Baby leads the way and feeds herself.

We started with the already soft and mushy stuff: avocado, banana, cucumber with hummus

Broccoli was a fast fave.  Saving photos for blackmail, just in case little miss contests in her primary years.

Marmite on Toast
One in each hand, always!

Oatmeal and Banana is another great breakfast choice


Hamburger and Peas

Tuna Fish and Blueberries

Green Smoothie
(Cucumber, Kale, Pear)

Scrambled Eggs, Avocado and Toast

Spinach Pancakes

Beef and Barley Soup

Toast with Blackberries

Chicken, Hummus, Peas and Bell Peppers

We love take out, too!  Chipotle is so good, there is no time to bother with our hands. Blanco has an awesome veggie hash that was a major hit.

A nutritious meal of Quinoa, Rice, Black Beans and Sausage that Chloe just loves

Playing and exploring with food leads to quite a mess, but luckily we have a fantastic clean-up crew on hand that volunteer their services most eagerly!  We just place the tray on the floor and then Jack and Poppy hit the seat for all the treasure Chloe left behind.

She is also loving to play the sharing game with them!

A lot of meals end up rolling over straight into bathtime, too. I don't think she minds.

From Bison and Salmon to Chicken and Beef, Chloe loves any meat we put on her tray.  Bananas are a hit or miss and applesauce?  Yuck!  Eggs and tomatoes are questionable as she broke out in some mild hives while they were 'newish' foods so we've pulled them out, but just tried strawberries and so far so good!  We think we will start nut butters sometime soon.

It is really fun, and while nerve wracking at times, she really is learning a lot from hit.  Her hand eye coordination seems to be really good, picking up individual peas and getting them in her mouth. She doesn't always eat that much, however.  But that's okay.  Why we are in the mindset of "food for fun until one."