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
Wednesday, September 11, 2013
Monday, September 9, 2013
Smelling the Roses
Mary Louise and I have been spending wonderful amounts of time together...at various doctors' offices. She loves her "Mommy - Meesey time" and I make every effort to stay very present while waiting with her. We read, color, talk, snack and giggle. We snuggle, laugh, listen and learn. Love and laughter in (almost) every minute. It should be everyone's goal.
I've been stressed lately. Very stressed. I've felt overwhelmed and needed breaks. With the number of doctor appointment mounding, home tasks getting away from me, and the school year (David's therapy) and ballet lessons starting, cracks are showing and cackles are starting...and then there's my bright idea about a booth at the markets here...way to pile it on, self!
Mary Louise and I went to the pediatrician yesterday to chat about allergy test results. The doctor was running late, so I requested we be put in a room (there are some nasty bugs going around our area - and measles has made its way to Houston - a short 3 hours from us. I am not very keen on sitting for an hour in the waiting room.) We waited 45 minutes in the room. When the doctor made it in, the table was a Mary Louise graffiti original and we were reading books after doing a math lesson on the IPad.
The doctor listened while I explained that I was very wary of doing weekly (or twice weekly) injections as it would entail me waiting with 3 little ones in a pedi waiting room twice a week, however long it took to get us in and out. So, I asked, would the risk to our family (being exposed to every illness entering our area), outweigh the benefit of the shot? or vice verse? Would the injections work for her? why?
I had a list of changes we had already started implementing for Mary Louise at home: HEPA filters in the bedroom and downstairs playroom (her 2 areas of most indoor play) as well as upgrading the central air filters. Increasing her elderberry and honey dosing, and introducing a nettles based allergy vitamin, washing our pups twice weekly, protectors on the mattresses and new pillows with protectors on them while also being aware of seasonal patterns and pollen blooms. I've also contacted an herbalist / acupuncturist friend of Brent's who has agreed to help us streamline our efforts and diet to best suit Mary Louise's needs.
For those who have written, the pets have never been allowed upstairs anyhow - except for Lizzie who sleeps in our (master) bed room as of about a month ago when her aging nerves prevented her from settling down to rest...ever. She climbs the stairs with me at night, sleeps in the corner (down the hall from the kids) and goes right back down in the morning. The cat is outside all day everyday and many nights. When he does decide to sleep inside, he's in the laundry room (we don't leave clothing in there). Anyhow, we are not re-homing our pets...haha...an ad would look a bit like this:
11 and 13 year old dogs and a 12 year old cat to be re-homed due to newly diagnosed allergies. All animals have sort of pleasant dispositions as long as they are allowed to sleep undisturbed for the greater portion of the day. The kids love them, and they tolerate the kids (or run from them). They are house broken - but, when angry, the little one (Chester) is sort of an asshole and tends to pee on your foot. All have lovely stink breaths and need water added to their foods so they can chew. Up to date on shots, and will forward their vet files...but it may cause a paper shortage. Oh. And if the grass is wet, don't expect either dog to set foot there for relief. They think the driveway, or sidewalk works just fine. Let me know if interested!! (*grin*)
The pedi's response was very positive and extremely supportive. She said that Mary Louise's allergies, while significant, are not absolutely horrible so unless I had come in pushing for injections, in our situation, the risk of bringing her into the office so often outweighed the benefit of the injections so she would not have gone ahead with them (at this time).
Outside the office, there were masses of blooming rose bushes. "Please can we stop and 'mell dem Momma?"
"Yes baby. Of course."
We went to the ENT the next day. He looked over the results and asked how her symptoms were at home. I told him about the herbal measures and holistic approach. He admitted to not knowing much about it and said it was, of course, my choice if I wanted to explore that route - it wouldn't hurt as far as what I had planned or was already implementing. After an exam, he stated Mary Louise's adenoids were remarkably smaller as compared to our first visit. At this time, he wouldn't make any changes - and supported our plan not to go ahead with the allergy shots.
We also discussed alternatives to the allergy shots should her symptoms worsen over the next year or so. We could do sublingual (under the tongue) drops at home instead of the injections. He has the facility and staff to mix her drops in office and said she would be a candidate for the home therapy should her condition worsen. If it came to that though, she would likely need an adenectomy (adenoid removal). We go back to him for a recheck in 6 months.
Long overdue updates to come - we've just returned from a trip to St. Augustine, Fl.!
xo,
Heather
I've been stressed lately. Very stressed. I've felt overwhelmed and needed breaks. With the number of doctor appointment mounding, home tasks getting away from me, and the school year (David's therapy) and ballet lessons starting, cracks are showing and cackles are starting...and then there's my bright idea about a booth at the markets here...way to pile it on, self!
Mary Louise and I went to the pediatrician yesterday to chat about allergy test results. The doctor was running late, so I requested we be put in a room (there are some nasty bugs going around our area - and measles has made its way to Houston - a short 3 hours from us. I am not very keen on sitting for an hour in the waiting room.) We waited 45 minutes in the room. When the doctor made it in, the table was a Mary Louise graffiti original and we were reading books after doing a math lesson on the IPad.
The doctor listened while I explained that I was very wary of doing weekly (or twice weekly) injections as it would entail me waiting with 3 little ones in a pedi waiting room twice a week, however long it took to get us in and out. So, I asked, would the risk to our family (being exposed to every illness entering our area), outweigh the benefit of the shot? or vice verse? Would the injections work for her? why?
I had a list of changes we had already started implementing for Mary Louise at home: HEPA filters in the bedroom and downstairs playroom (her 2 areas of most indoor play) as well as upgrading the central air filters. Increasing her elderberry and honey dosing, and introducing a nettles based allergy vitamin, washing our pups twice weekly, protectors on the mattresses and new pillows with protectors on them while also being aware of seasonal patterns and pollen blooms. I've also contacted an herbalist / acupuncturist friend of Brent's who has agreed to help us streamline our efforts and diet to best suit Mary Louise's needs.
For those who have written, the pets have never been allowed upstairs anyhow - except for Lizzie who sleeps in our (master) bed room as of about a month ago when her aging nerves prevented her from settling down to rest...ever. She climbs the stairs with me at night, sleeps in the corner (down the hall from the kids) and goes right back down in the morning. The cat is outside all day everyday and many nights. When he does decide to sleep inside, he's in the laundry room (we don't leave clothing in there). Anyhow, we are not re-homing our pets...haha...an ad would look a bit like this:
11 and 13 year old dogs and a 12 year old cat to be re-homed due to newly diagnosed allergies. All animals have sort of pleasant dispositions as long as they are allowed to sleep undisturbed for the greater portion of the day. The kids love them, and they tolerate the kids (or run from them). They are house broken - but, when angry, the little one (Chester) is sort of an asshole and tends to pee on your foot. All have lovely stink breaths and need water added to their foods so they can chew. Up to date on shots, and will forward their vet files...but it may cause a paper shortage. Oh. And if the grass is wet, don't expect either dog to set foot there for relief. They think the driveway, or sidewalk works just fine. Let me know if interested!! (*grin*)
The pedi's response was very positive and extremely supportive. She said that Mary Louise's allergies, while significant, are not absolutely horrible so unless I had come in pushing for injections, in our situation, the risk of bringing her into the office so often outweighed the benefit of the injections so she would not have gone ahead with them (at this time).
Outside the office, there were masses of blooming rose bushes. "Please can we stop and 'mell dem Momma?"
"Yes baby. Of course."
We went to the ENT the next day. He looked over the results and asked how her symptoms were at home. I told him about the herbal measures and holistic approach. He admitted to not knowing much about it and said it was, of course, my choice if I wanted to explore that route - it wouldn't hurt as far as what I had planned or was already implementing. After an exam, he stated Mary Louise's adenoids were remarkably smaller as compared to our first visit. At this time, he wouldn't make any changes - and supported our plan not to go ahead with the allergy shots.
We also discussed alternatives to the allergy shots should her symptoms worsen over the next year or so. We could do sublingual (under the tongue) drops at home instead of the injections. He has the facility and staff to mix her drops in office and said she would be a candidate for the home therapy should her condition worsen. If it came to that though, she would likely need an adenectomy (adenoid removal). We go back to him for a recheck in 6 months.
Long overdue updates to come - we've just returned from a trip to St. Augustine, Fl.!
xo,
Heather
Sunday, August 18, 2013
Convos with 4 year olds
David and I talking over pancakes this morning:
David: What's that??
Me: Peach syrup Daddy got while in Ruston. Would you like to try it?
David: Ummmmmmm sure!
Me: (pouring)
David: So dis is peach syrup yike da peach we ate yast night with da red skin?
Me: yes - like the peaches Daddy brought home a few weeks ago...
David: da peaches with da red skin and I didn't yike dat red skin but the peaches were deeeee-wishus but I didn't yike dat red skin so you took it off???
Me: yes. The peach syrup is made from peaches just like that.
David: and nay-pool syrup is made from...nay-pools?
Me: well, the sap of maple trees. Maple syrup comes from trees...
David: ok. So nay-pool syrup comes from trees and peach syrup comes from peaches with da red skin I didn't yike and nights come from castles??
Me: well, yes...in a manner of speaking...
David: ok! and maybe I can be a knight? and maybe dus a supa-hewoe? or maybe a ba-weese officer? or maybe a fireman? and and umm can I go pway with my friend May-weese now?
Me: yes, you can go play and you can do all of those things David? Do you know why you can do all those things?
David: umm - yes Mooom...because I can do any-ting I want to...*sigh*...can I go pway now?
Me: yes Bub. Go play.
*Lincoln Log explosion in the play room...LOTS of giggles and all 3 working together...win*
***************
Last night with Mary Louise:
Me: ok Drama Queen...
ML: Moooom, you don't call me Drama Queen. You call me boo-ti-ful.
Me: Excuse me. I stand corrected.
ML: hmph.
*********
ML: Mom, you da docca now and putting a bandaid on da docca Meesey Pie's knee! You such a good docca Mommy!! Thank you!!
David: What's that??
Me: Peach syrup Daddy got while in Ruston. Would you like to try it?
David: Ummmmmmm sure!
Me: (pouring)
David: So dis is peach syrup yike da peach we ate yast night with da red skin?
Me: yes - like the peaches Daddy brought home a few weeks ago...
David: da peaches with da red skin and I didn't yike dat red skin but the peaches were deeeee-wishus but I didn't yike dat red skin so you took it off???
Me: yes. The peach syrup is made from peaches just like that.
David: and nay-pool syrup is made from...nay-pools?
Me: well, the sap of maple trees. Maple syrup comes from trees...
David: ok. So nay-pool syrup comes from trees and peach syrup comes from peaches with da red skin I didn't yike and nights come from castles??
Me: well, yes...in a manner of speaking...
David: ok! and maybe I can be a knight? and maybe dus a supa-hewoe? or maybe a ba-weese officer? or maybe a fireman? and and umm can I go pway with my friend May-weese now?
Me: yes, you can go play and you can do all of those things David? Do you know why you can do all those things?
David: umm - yes Mooom...because I can do any-ting I want to...*sigh*...can I go pway now?
Me: yes Bub. Go play.
*Lincoln Log explosion in the play room...LOTS of giggles and all 3 working together...win*
***************
Last night with Mary Louise:
Me: ok Drama Queen...
ML: Moooom, you don't call me Drama Queen. You call me boo-ti-ful.
Me: Excuse me. I stand corrected.
ML: hmph.
*********
Mary Louise was running down a brick walk at the farmers' market yesterday morning. Brent was following with Everett and David yelling at Mary Louise to slow down. She fell and cut her leg just above her knee pretty badly. She recovered quickly though - blood and all and I got her in her car seat with some clean tissues until we could get to the pharmacy (thankfully, it was at the very end of the market day so we just packed up and left a few minutes early). Bandaids, Neosporin and Motrin in hand, I went to clean her up a little better:
ML: Mom, you da docca now and putting a bandaid on da docca Meesey Pie's knee! You such a good docca Mommy!! Thank you!!
Love these kids and loving their quizzy and helpful ages.
We had a good first day at the market. Though I'm not sure we're really with our "niche" group of customers, we'll give the Sulphur location one more try. Other vendors said it was a very slow day. But the weather was beautiful, I talked to alot of interested people, and if I enticed a person enough to simply SAMPLE what I had, they almost always bought something. So there's that. I'm still working on getting in on the ones closer to the house though - in part because, well, they're closer, but mostly because I think our products will do better there. (A number of people saw "organic" and "molasses" and "local honey" and said, "oh no sug, I don't do none of that healthy stuff." This makes me sad...
A pic Brent snapped with his phone:
It can only get better from here right???
xo,
Heather
Friday, August 16, 2013
Week in Review
Just to recap the week:
Brent and I did our first triathlon relay together. It was fun.
**********
We met our hematologist and found out Everett probably doesn't have some completely random and bizarre genetic disorder. We were happy. He does, however, have a pretty severe iron deficiency and will be on daily medications as well as a high iron diet until Christmas. So, there's that.
**********
Everett is cutting a top molar. He's taking it well all things considered - just clingy and nursing as much as possible. Odd thing is: he seems to be getting all of his teeth on the right side of his mouth first.
**********
I committed to having a booth at one of the local farmers' markets. My first day is tomorrow. I'll sell homemade granola, molasses cookies and organic elderberry syrup made with local honey under the name "Downtown Naturals". I'm excited...and nervous. But, mostly excited. Even if the whole thing is a flop, at least I'm trying it out and fulfilling my exotic dream of participating as a vendor at a farmers' market. (I know - I should simmer down - dreamin' big here!)
***********
AAAAAnd Mary Louise had allergy testing today. She looked like this in the waiting room:
She was so very excited to have a little "Mommy-Meesey time" believe it or not! (sweet baby girl - love her)
As it turns out, she's allergic to just about everything - including dogs, cats, horses and cows as well as grass, pollen, weeds, a few molds and a number of trees. Superb. Please excuse me while I sit in the corner and have a small pity party.
Here's how it went:
Me: wow Mary Louise! you're doing so well! (as the nurse is applying the allergens - ML didn't move at all)
RN: I know! she's being so patient and calm!
Me: What's that giant growing red dot? Is that something she's allergic to?
RN: uh - yeah. That's dog saliva.
Me: (jaw drop) (the sound of the selfish portion of my heart breaking into a thousand pieces. Never in my life have I been without a dog.) But I have 11 and 13 year old dogs?
RN: There are things you can do to lessen their impact on her health...I don't ever tell people they HAVE to get rid of their pets...but she is clearly allergic...the shots will help...(her back looked like this - I was taking pics so Brent could see - not great quality, but the idea is there):
a couple of minutes goes by. Nurse is still in the room discussing a few early allergy reactions.
RN: We're going to have to stop now.
Me: That was fast...I thought she had to sit for at least 20 minutes?
RN: well, she's reacted to almost everything. Some of the areas are about to grow outside the lines I drew. So we can stop here. 8 minutes.
Mary Louise: Mommy? I thought you were going to paint my nails?
and that's pretty much what happened. I'll go on Monday morning to discuss a plan of action with the pediatrician. Mary Louise and I go to her ENT on Tuesday to recheck her adenoids.
Momma = tired.
xo,
Heather
Brent and I did our first triathlon relay together. It was fun.
**********
We met our hematologist and found out Everett probably doesn't have some completely random and bizarre genetic disorder. We were happy. He does, however, have a pretty severe iron deficiency and will be on daily medications as well as a high iron diet until Christmas. So, there's that.
**********
Everett is cutting a top molar. He's taking it well all things considered - just clingy and nursing as much as possible. Odd thing is: he seems to be getting all of his teeth on the right side of his mouth first.
**********
I committed to having a booth at one of the local farmers' markets. My first day is tomorrow. I'll sell homemade granola, molasses cookies and organic elderberry syrup made with local honey under the name "Downtown Naturals". I'm excited...and nervous. But, mostly excited. Even if the whole thing is a flop, at least I'm trying it out and fulfilling my exotic dream of participating as a vendor at a farmers' market. (I know - I should simmer down - dreamin' big here!)
***********
AAAAAnd Mary Louise had allergy testing today. She looked like this in the waiting room:
She was so very excited to have a little "Mommy-Meesey time" believe it or not! (sweet baby girl - love her)
As it turns out, she's allergic to just about everything - including dogs, cats, horses and cows as well as grass, pollen, weeds, a few molds and a number of trees. Superb. Please excuse me while I sit in the corner and have a small pity party.
Here's how it went:
Me: wow Mary Louise! you're doing so well! (as the nurse is applying the allergens - ML didn't move at all)
RN: I know! she's being so patient and calm!
Me: What's that giant growing red dot? Is that something she's allergic to?
RN: uh - yeah. That's dog saliva.
Me: (jaw drop) (the sound of the selfish portion of my heart breaking into a thousand pieces. Never in my life have I been without a dog.) But I have 11 and 13 year old dogs?
RN: There are things you can do to lessen their impact on her health...I don't ever tell people they HAVE to get rid of their pets...but she is clearly allergic...the shots will help...(her back looked like this - I was taking pics so Brent could see - not great quality, but the idea is there):
a couple of minutes goes by. Nurse is still in the room discussing a few early allergy reactions.
RN: We're going to have to stop now.
Me: That was fast...I thought she had to sit for at least 20 minutes?
RN: well, she's reacted to almost everything. Some of the areas are about to grow outside the lines I drew. So we can stop here. 8 minutes.
Mary Louise: Mommy? I thought you were going to paint my nails?
and that's pretty much what happened. I'll go on Monday morning to discuss a plan of action with the pediatrician. Mary Louise and I go to her ENT on Tuesday to recheck her adenoids.
Momma = tired.
xo,
Heather
Thursday, August 15, 2013
Team Impossible
Brent and I participated as a team in a triathlon last weekend. It was our first time working together for a race and we were SO excited! Brent has been back at riding at least 5 days a week for about 6 weeks now. So, the race was an early check on progress. I completed the swim and run portions of the triathlon with Brent doing his bike in the middle.
We did well! (and more importantly, had a whole heap of fun participating!)
There was a 350m swim. I finished 5th overall (out of 78) and my time was 5 min. 11 seconds. Not too shabby for getting in the pool a total of 5 times in the last decade and a half. (in all fairness, I did US swimming for 9 years and high school swimming for 5. I've lost most of my mannish upper body strength...but not much of that good old "kill myself to move up in line" spirit - ha).
Brent did his 13 mile race in about 45 minutes. I don't know the exact time - nor do I care. He looked wonderful riding in on that bike to high five me off to do the final leg - a 5k.
I finished the 5k in under 30 minutes - a 9.25 pace. It's nothing to write home about - but it's a great time and pace for me so I'll take it.
When I ran across the final finish line, Mary Louise was bouncing up and down, Everett was toddling towards me, Mommom was yelling, Brent was snapping pics and yelling, David was crying and running to tell me why - and I was grinning.
Not too shabby for a first debut - and we stole first place in relays!!
David buried his face in my sweaty lap (gross kid - gross) and blubbered something about wanting to play with the IPad. A man walked by and said to the person next to him, "ha - after all that, she still has to play "mom" at the end. Sucks."
No, it doesn't - but I can understand your point sir. I was tired, drenched in sweat, slightly dehydrated and coming off a a super adrenaline high. But nothing compares to those sweet cheers and the kisses and hugs as well as the, "Mommy? I so pwoud of you!!" after working hard to show those kids that anything really is possible.
I've long referred to (our family) as "The Impossibles". Our children are here despite impossible mortality odds, without profound disability despite impossible morbidity rates. Brent was born an early preemie, I was born in the car in the middle of the night in February (Mommom didn't quite make it the hospital). He and I met at just the right time after years of passing one another during swim meets, gym workouts, and Mardi Gras festivities.
All things considered, I don't really know how we all scraped by to get here today. I just know that this is where I am supposed to be...
Right here, right now...
(Everett was so proud to get a medal too - there was an extra one at the end and the race officials graciously passed it to our sweet boy!)
xo,
Heather
We did well! (and more importantly, had a whole heap of fun participating!)
There was a 350m swim. I finished 5th overall (out of 78) and my time was 5 min. 11 seconds. Not too shabby for getting in the pool a total of 5 times in the last decade and a half. (in all fairness, I did US swimming for 9 years and high school swimming for 5. I've lost most of my mannish upper body strength...but not much of that good old "kill myself to move up in line" spirit - ha).
Brent did his 13 mile race in about 45 minutes. I don't know the exact time - nor do I care. He looked wonderful riding in on that bike to high five me off to do the final leg - a 5k.
I finished the 5k in under 30 minutes - a 9.25 pace. It's nothing to write home about - but it's a great time and pace for me so I'll take it.
When I ran across the final finish line, Mary Louise was bouncing up and down, Everett was toddling towards me, Mommom was yelling, Brent was snapping pics and yelling, David was crying and running to tell me why - and I was grinning.
Not too shabby for a first debut - and we stole first place in relays!!
David buried his face in my sweaty lap (gross kid - gross) and blubbered something about wanting to play with the IPad. A man walked by and said to the person next to him, "ha - after all that, she still has to play "mom" at the end. Sucks."
No, it doesn't - but I can understand your point sir. I was tired, drenched in sweat, slightly dehydrated and coming off a a super adrenaline high. But nothing compares to those sweet cheers and the kisses and hugs as well as the, "Mommy? I so pwoud of you!!" after working hard to show those kids that anything really is possible.
I've long referred to (our family) as "The Impossibles". Our children are here despite impossible mortality odds, without profound disability despite impossible morbidity rates. Brent was born an early preemie, I was born in the car in the middle of the night in February (Mommom didn't quite make it the hospital). He and I met at just the right time after years of passing one another during swim meets, gym workouts, and Mardi Gras festivities.
All things considered, I don't really know how we all scraped by to get here today. I just know that this is where I am supposed to be...
Right here, right now...
(Everett was so proud to get a medal too - there was an extra one at the end and the race officials graciously passed it to our sweet boy!)
xo,
Heather
Wednesday, August 14, 2013
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
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
Thursday, August 8, 2013
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
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