Sunday, July 28, 2013

Medical updates

David is doing very well - no real updates or concerns right now. He continues to use his preventative inhaler (Qvar) before bed and takes his vitamins, probiotics and elderberry syrup in the morning. That's it! (yay!)
Mary Louise is in the middle of check ups and meetings with a few specialists. (Pulmo, ENT and allergist)

We had a visit with the pulmo last week and I am very happy to report that we have been able to reduce her preventative medications to just one puff of Advair daily until September. We will go back up to twice daily then as it will be RSV and flu season and she'll need the extra protection. She'd had immune function testing during her last visit with him and he reported everything was normal and very stable so her respiratory condition is uncomplicated by secondary factors.

We are participating in a few activities this fall(ballet classes for one), but must remain very mindful and weigh our winter outings carefully to protect Mary Louise and David as best we can. Their immune systems are becoming more specialized and will continue to develop over the next few years. Preventing any further serious illness or hospitalizations is one of our top priorities as doing so can offer our sweet big kids the very best long term heath outcome.

The doctor spoke with me at length -discussing our plans socially and medically to formulate the best road for Mary Louise. It was a very positive visit and he is pleased with our decisions and progress so far. He asked that we consider a beach vacation (we have one planned) as swimming in salt water works wonders for asthmatic patients with seasonal allergies - helping their sinuses to clear and reducing inflammation. (ha - I can't say I mind that sort of medicine!)We will have another check up in 3 months.

P.S. precious girl is 30 pounds 15 ounces as of last week. WHAT?!! we have a 30 pound kid in this house!!

Everett went in for his (late) 1 year check up last week. It was a circus with all 3 kids in need of some sort of immunization. We vaccinate - but do a very mixed schedule. Mary Louise and David reacted, in some way, to every shot they had - typically fever and pain, general malaise - so we only give 2 at a time now. It works for us. Our doctor is supportive. But it means I am trucking back and forth to the office a few times extra to get things done. Anyhow...

This was the very first time Mary Louise and David have reacted - emotionally - to shots. Keep in mind, these kids have been poked and prodded more than some terminally ill patients I've encountered. They have a history of not even flinching - much less fussing - for shots or blood draws.

Yeah - those heart breaking quiet days are apparently over. Those 2 were WILD. So much so that I'm pretty sure the office breathed a sigh of relief when we were finally able to cart the screaming banshees out of the door. (Gracious thanks to Mommom for helping with the wrangling). Mary Louise tried to escape at one point. David tried to kick me in the face a few times. I stood wide eyed and drenched in sweat when all was said and done. Good times.

Everett has a concerning spot on one of his top teeth so we'll be making his first appointment with the dentist next week.

He is on the petite / normal side at 20 pounds 15 ounces and just over 30 inches long. But he's growing just the same.

The doctor did a routine CBC (general bloodwork) and lead screening. The lead screening takes a day or 2 as the lab does them in batches. I didn't hear anything yet so it's either normal or I'll hear something Monday.

The CBC was very concerning. Everett has moderate anemia. The cause is, as of now, unknown. We have started a prescription supplement (though the insurance company lists it as an OTC drug so they will not cover it and I have no appeal recourse as the classification is preventing the coverage...could someone please explain that to me?! It's not very expensive - so that's not the issue - it's the principle: We pay for the policy. The policy should cover NEEDS. This is a need. It should be covered. I've spoken to 2 pharmacists. There is no OTC med that comes close to this and this is, in fact a prescription medication.). We will have repeat blood work done in 2 weeks time. The expectation is that, if he is simply iron deficient, the lab values will show notable turn around. If not, further testing is warranted and there are a couple of pathological processes to rule out.

I wish I could say that I am not worried at all...but I am terrified. The idea that something might be awry with that boy makes me ache inside, makes my brow furrow uncontrollably, makes my lips draw into a permanent slight frown and my shoulders tense. I want to shield him (and Mary Louise and David) from all that makes life difficult at times. I haven't succeeded with any of them of course - that want was poo-poo'd from the moment their cells became an organized mass for goodness sake. But the want is still there. It's not just that though...this is Everett:

It boggles my mind that anything could even be off with that child - much less "moderate to severe"ly off. It just doesn't make sense.

Truth be known, I thought about asking for repeat blood work right there - thinking they might have accidentally switched the vials somehow...I just don't understand...

So, we are giving the medication as prescribed (ICAR) and focusing on an iron rich solid diet as much as possible. I spoke with the lactation consultant where the kids were delivered about whether or not increasing my iron would help. She couldn't find any particular research stating it would, but said it would make sense that me taking in more iron would increase the iron in my milk. So, I'm do all I can with regards to my diet as well as Everett still nurses a considerable amount of time (though I can't say how much volume he's getting...) (oh, and because this is a hot topic in breastfeeding discussion groups: Breastmilk is not considered a "high iron" food. However, the iron there is much more easily absorbed which makes it nutritionally sound and, in most cases, supplementation of vitamins and minerals is unnecessary.)

In 2 weeks *sigh* we will have more answers...and hopefully not too many more questions. I'll, of course, update here...


1 comment:

  1. I love Everett's rock 'n' roll red curls!

    No pre-K for the big kids this year, I'm assuming?