And to continue...

Everett and I went to the hematologist today for a follow up. Verdict: 3 more months of iron therapy. Boo on this. Good news: his numbers are improved. He is no longer anemic as far as his hemoglobin but is deficient in ferritin (iron stores). Simply put, he lacks stored iron. So, if he should need extra for any reason, it's not there. His dosing is the same. He's 24 pounds now (growing!!) and doing well otherwise - feisty as ever. The hematologist still believes this stems from his traumatic birth...I giggled as he and David marched to bed the other night: Everett in 2T footies and David in 3T. I predict they'll share shorts in the spring...

He has been talking more and more; demanding more and more; and doing everything he can to keep up with his big brother and sister. It's a little (very) overwhelming to watch the three of them play together. Mary Louise and David adore Everett and submit, albeit begrudgingly, to his every whim.

In the past few weeks, we have replaced our (commercial) downstairs heating and cooling unit, had issues with our kitchen faucet and the kids have braved a strep (ML) and cold (E and D) combo. One dog is on antibiotics for a skin issue and the other is on Prozac for, well, a noggin' issue.

Mary Louise and David started rehearsals yesterday for Rudolph - this year's civic ballet production. They are so cute. It's a bit of a mass chaos on stage but eventually kids part and leave sweet David searching for his sister...who typically tries to brush him off once before conceding to take his hand or at least let him follow her. They're both doing well with it all and (I think) loving the attention.

But busy is an understatement here. With all of the pressure, over booking, under sleeping, I still find little moments (when the kids are on stage or at the end of the night when Everett is nursing while falling asleep) to be grateful. The irony that this (happy) sort of busy even gets to me a little after all of the appointments, therapies and just plain organizational mess I've had over the past few years isn't lost on me. I finally have the luxury to think of things as optional - even though it's sometimes on a subconscious level.
**************

Some long over due pics:
There are few things that light up Everett's face as much as a simple ball and game of catch:

We did have a jackolantern this year...but the only little that would touch the "guts" was Everett:


Mary Louise on Halloween:

She spent the evening concerned that someone might need help and mistake her for a "real" doctor. She was so anxious about it that I had a hard time getting her to trick or treat at all. She made sure to tell anyone who would listen that she had not, in fact, finished "docca school" just yet and was therefore not qualified to be of assistance. Sweet baby. What a gift.
David, on the other hand:

promised he could absolutely save anyone and everyone from a blaze - no problem - you know, because that "dus what fire fighters do Mom". (I pretty much believe him. My hero.)
Typical:

Just because:

Betcha can't find David (group pic for Rudolph):


Back stage:






David's congratulatory reward:

Mary Louise's:

Truth be known, Mary Louise wanted flowers after each rehearsal as well.

They were so excited all of their grandparents and Uncle Kyle and Sean came to see "da big stage" performance. Mary Louise begged to see the final showing "from the chairs" and Uncle Kyle happily obliged. (David requested a "Supa Keer-oh show" that evening. Apparently, he'd had enough ballet for the day.)


This picture makes me laugh:

Doting uncles:


Good. Times.

xo,
Heather

On the Mend

Everett and I made the hour+ drive to see his hematologist yesterday afternoon. There is a strict "one kid / 2 adults" policy there so Brent stayed behind with the big kids. We pulled in to the parking lot and I saw Everett shrink notably in his seat. My sweet baby boy...

I lifted him out of the car to my chest. He melted into my shoulder and wrapped his arms tightly around my neck. We entered via the double automatic doors. He gave me the best hug...ever. If I didn't know he was so nervous, I wouldn't feel quite so guilty saying how much I loved that moment...

We checked in and walked across with our lab paperwork. This place is one of the most efficient offices we've ever visited. Honestly - the most efficient. Somehow, there are no lines, people are patient, soft spoken and courteous. We were taken back immediately for Everett's blood tests.

About 30 seconds later, his vials of life were off and spinning. I had almost 2 hours to use before our appointment time.

We played outside, ate snacks, played in the car and made our way up to the doctor's office with 30 minutes to spare.

We stared at the fish tanks for a few minutes before being called back.

Everett LOVES the toys in those rooms. There are little classic wooden cars and activity cubes - all very clean and in pristine condition. He makes "vroooom" noises as he scoots the cars across the tables and chairs and giggles when they fly onto the floor.

The doctor came in with a smile. The blood work had just been printed and he had a chart comparing his results over time (1st draw, second, and the newest results).

He's improving!!! In fact, he's improving so fast, the doctor decreased his iron dose just a bit.

What does this mean????? Iron deficiency anemia. That's it!! Thalassemia is off the table and we'll continue with 3 more months of iron therapy while the unhealthy old red cells die off and healthy ones take their places.

Aaannnnd in other news: the sweet potato gained 2 pounds in 3 weeks!!

xo,
Heather

It's (not) all Greek

Remember that time someone told you that your red head / super fair child might have a genetic disorder that typically runs in Greek / Mediterranean families lines and you were all, "huh?!" and they were all, "yeah. I think so." and you said, "so what does that mean?" and they were like, "well, not much...unless he falls in love with one of those olive complected beauties and wants to have babies with her...I mean...he doesn't have any other symptoms of the disease...right?"

Enter description of symptoms:
bone deformities
brain damage
slow to gain milestones
signs of poor oxygenation
frequent severe illness
immune suppression

P.S. - the above isn't from Google - it was actually brought up and discussed during Everett's first and second blood draws.

Then that someone added:
"because his white count looks ok so I don't *think* it's Leukemia...but it might be lead poisoning so let's see how that test comes back...I'll get back with you in a few days on that one"

and then you were like, "wait...I just wanted a 12 month check up and am a little late..."

and they were all, "well, you should probably see a specialist."

Remember that time?

So, you cried and cried and stared at your sweet little *deceivingly* healthy baby for a few days before harassing the specialist's office to give you a dang appointment 5 days after the last blood work was done...because, let's be honest, 3 weeks with all of those possibilities would likely end in you stress eating yourself to death. "Therefore," you said, "the continuation of your family unit depended on you getting your bumpkin in there, like, asap?"

What about that time? Remember that?

Sadly, I do.

Letterhead with "HEMATOLOGIST / ONCOLOGIST" across the top that contained explicit instructions about the exact number of family members (2) that could enter the room with the patient and that they were to be adults - absolutely NO other children allowed during appointments (as well as the intake paperwork for new patients of course) arrived at our house over the weekend. I dreaded filling it out. I dreaded having another doctor contact in my phone. But most of all, I dreaded having a conversation with the man whose name was on that letterhead. I just didn't want him as part of our medical family. I'm not sure how else to describe it. I was shutting down. I just didn't want to hear anymore. Everett looked healthy (still does) and I flat didn't want to know anything else.

But, we went to the appointment.

We arrived in the parking lot of the specialty center, got Everett out of his seat - grinning, but worried as he'd just ridden an hour in the car with *only* his momma and daddy. (Mary Louise and David were home with Mommom who popped over after visiting family in Lafayette.) Kiddo knew something was up. I caught a glimpse of something pink on the parked car beside us: "In Memory of Meghan" with an angel underneath the wording. We were there...this was it.

I walked in and shuffled down the longest isle ever to bring the paperwork to the receptionist. (no seriously, the design of the waiting area, I swear, would insight panic in even the calmest of parents...maybe not...I'm high strung...there it is.)

I turned and went to the restroom. 1 private stall with a suspiciously comfy antique wooden chair in the corner. It appeared completely pristine but wreaked of vomit. This could not be our new home...

We were called back quickly and the nurse was amazingly sweet. Everyone was relaxed and caring. Everett was completely freaked out -but I did manage to get him interested in a few super cool toys that were around...and I'd brought markers - always a win!

The doctor sat down calmly. He looked over the paperwork and test results I'd brought (a good thing because the proper history sure wasn't faxed even though I'd confirmed with our pedi office it had been...they faxed blank results sheets???)

He asked me the following:
Why are you here?
Why were blood tests run in the first place?
What were the circumstances of Everett's birth?
What was his birth weight?
Any concerns before this?
Do you even have Greek or Mediterranean heritage?
How are you giving his medication?
Does he take it well?
How much is he getting?
Are you sure that's the concentration?

He went over the blood work step by step with me with this funny little smirk and SUPER calm demeanor the whole time. Then he said those golden words, "here's why I think Everett is just severely iron deficient...and why Thalassemia isn't likely"

Reasons stated:
He had a severely traumatic birth which included extreme stress and bleeding
He was slightly premature which means he missed out on at least 3 more weeks of iron stores he would have gotten from you (Heather) during a full term pregnancy

Me: so what about his age? Isn't it true that most 1 year olds are at least slightly anemic?

Dr.: yes - growth during the first year literally uses everything your body has...when else are you going to double (almost quadruple) your weight? Never...I mean, if you were 150 pounds and you suddenly grew to 450 pounds, you'd probably be anemic too, yes?

The doctor continued:
I see you gave the iron supplement for 2 weeks and saw minimal improvement. Everett is 9.9 kg today. The CORRECT low dose that I start severely anemic children at is 3mg / kg.

(Everett has been getting 15mg total per day. He SHOULD have been getting twice that per his weight.)

Please start him on 30mg and we'll recheck him in 3 weeks. Expect to keep him on the iron supplement for 3 months AFTER his blood work comes back at low normal - which I would expect to be at the 3 week mark. We can go up on his iron supplement dosage again if needed. He can have as much as 6mg /kg. I suspect his iron stores are nonexistent at this point so the 3 months following normal result should help his body to recover from this. What he is experiencing is something I would consider to be as normal per his history, age and growth. His red cells will remain small and deformed until he has healthy iron stores again (and wouldn't, alone, indicate Thalassemia).

See you in 3 weeks.

I wanted to hug him. Literally. Hug. I didn't. But I thought about it...and thought about yelling, "WTF" really loudly as well. Instead, I just sighed, kissed Everett on the forehead, hugged him closer and smiled at Brent.

The doctor also asked me if Everett was the baby of the family and if Mary Louise and David ever had anemia. (they didn't believe it or not) He said he did a study in 1995 and 9 out of 10 anemic children were the youngest in the family. He couldn't find the reason - it just was.

*Sigh*. I seriously couldn't make this stuff up if I tried. We'll go back to that same office in 3 weeks for repeat blood work. As long as it's normal, I believe we'll have another recheck 3 months later then done.

Thank you so much, again, for all who have checked on us and offered gracious thoughts and prayers. It is all very very much appreciated. I promise.

xo,
Heather

Just Smile

Sometimes, there's nothing to do but smile - one of those big inappropriate smiles that comes from the depths of a mother's crazy soul (um. let's face it. Mother's are a breed all their own. We're all a bit off...some more than others clearly...but anyway...back to inappropriate smiling...) After the inappropriate smiles come the ear piercing cackles. The cackles sometimes consist of audible curse words - so cover your ears little ones - ear muffs. After the cackles comes the heart breaking silence. Just a sea of nothing between the fog so thick one can't even breathe and that final acceptance and clarity.

I am on the verge of cackling - so we're ok right now. 

Everett had his blood work rechecked today. What I thought would be a few minutes and a whine or 2 from a finger stick turned into an hour wait because the doctor wanted to make sure to see us personally (we only had a nurse's visit on the schedule so we had to be fit in). Once in the room, the nurse was overly formal with the computer work, really quick and efficient with the finger stick, then painfully slow at getting the results...probably not - but that's what my neurotic little heart processed while waiting and throwing a half ton of gold fish crackers at the big kids while they drew murals on the table paper and learned phonics Ipad style. (how's that for a nice fat run on sentence?)

(before I move on, it should be noted that Everett is OK. The following is what we've found out, how I found out and what considerations need to be kept in mind from here until we see the pedi hematologist. After that visit, some of this may change. However, the diagnosis is very likely correct from what I've been told.)

Our dear pedi entered. I tried to read her. She's a hard read. Then she sighed. She's much easier (to read) when she sighs. Then she looked at Everett and I started to cry. She said Thalassemia and a ba-jillion questions entered my mind but I couldn't focus on even half of one. She said Leukemia was pretty much ruled out because Everett's white cells have been stable. But, his blood work had only marginally improved. (I know, you're still on Leukemia right? ruled out...try to let it go)

For the medical pros and curious among us: Everett has been on ICAR for exactly 2 weeks today - 15mg / 1.5 mls ; 1.5 mls daily

7/25/13 - first CBC

Lead: 5.1

WBC 7.5

HGB 8.6

HCT 27.8

MCV 60.5

MCH 18.9

PLT 285 (low normal)

MPV 7.2

8/8/13 - second CBC (no lead repeat - moderate range in first screen)

WBC 8.9

HGB 9.2

HCT 29.5

MCV 62.9

MCH 19.7

PLT 209

MPV 7.5

normal ranges:

WBC 6-17

HGB 10.5 - 13

HCT 33-38

MCV 70-84

MCH 23-30

PLT 250 - 600

MPV 8-11

Essentially, this means Everett is anemic and his red cells are very small. There is still some concern that an iron deficiency anemia is contributing to the abnormal labs. But the general feeling is that Everett has Thalassemia Trait (or Minor). This means he carries and is chemically affected by the genetic mutation that is Thalassemia but he does not physically express the disease process. He's heterozygous for one of the forms of Thalassemia. (I invite you to review your high school Punnett Square genetics lessons *grin*). 

Concerning? yes. End of the world as we know it? no. He's still the healthy smiling sweet poop a doop (as Granny calls him) he's always been - and he'll continue to be so. Right now, this means we need to know his blood work will always appear very concerning - always irregular. We might have to have checks every so often so that we can know his normals in case a situation should arise where such information would be important (blood transfusion parameters and processing). He will also need to keep this in mind if he chooses to have children (in 30 to 45 years...I'm softening ha). If his spouse (um. hoping - ha) should carry the same genetic trait, the baby could have Thalassemia Major which is devastating. 

Why are we so shocked? This is a genetic mutation that tends to run in Greek and Mediterranean blood lines. Umm...if we have relatives in Greece, be forewarned to make a bed Sug because I'd like to come and visit! Furthermore, you may or may not have noticed the whole super white kid / fair hair, light eyes, freckled face thing we have going on here...this was just not even close to being on our radar.

So, right now, we are waiting on a call from the pediatric hematologist. (Because, you know, we don't have that "ologist" in our contacts just yet.) He will (likely) run further (more specific) testing which will hopefully offer a more complete picture on our little Everett. If this is Thalassemia Trait, Everett would not need further care or any treatment at this time- there's nothing we can do and his body seems to have compensated well for his deficiencies. We will simply have the information if or as we need it.

We have Mary Louise's allergy testing at the end of next week and an ENT check up (where we will likely learn if an adenoidectomy will be recommended (please...please no)). So, I'll be updating on our family medical status quite a bit for awhile...

Many many many thanks for the check ins, thoughts and prayers...sometimes all I can do is smile...or maybe cackle (ha!).

xo,

Heather