Thursday, June 6, 2013

Breaking My Silence

So a month has gone by. A whole month. A MONTH!! If I don't blog soon, I'll build it up far too much in my head and just stop altogether...I know - makes perfect sense right?

The kids are finally feeling better after a week with snotty noses and coughs for the big kids and a nasty tummy bug for Everett. There is an upside...I hesitate to put it in writing for fear that the old "if you proclaim it aloud, it will happen" rule will get us...but my mom says never to react or do things out of fear so here it goes...

We did NOT have to resort to nebulizer treatments!!!! In fact, we didn't even go to the doctor. Mary Louise had pretty ugly sinus congestion - and it actually STAYED in her sinuses!!!!!

Good grief!! and Amen!!

I'm not sure how much I've skipped over in the past month or 2 - but we have been wildly busy and I rarely re-read my old posts...so some of the following posts may be repeated information...

We went to the pulmonologist a number of weeks ago. He put Mary Louise on Advair as we'd already tried and failed with his first 3 suggested preventative med schedules. He changed a few things about our daily routine and wholeheartedly supported our daily probiotic use. We also use Elderberry syrup and local honey daily - increasing the usage of both during illness. He didn't know if either of those would help - but didn't mind that we employ them so we are continuing.

The Advair is wildly expensive. So expensive, in fact, that the doctor didn't even want to prescribe it - assuming we wouldn't be able to keep up with the daily or month cost.

But we have 2 insurance policies for instances such as these - so we got the script and the meds - and are hoping the big kids will get to keep their secondary policy for another year as their cases are being reviewed once again.

Within days of her first dose of Advair, I noticed a difference in Mary Louise's breathing: less wheezing, deeper breaths. It worked. For the first time since her asthma symptoms started, she had relief. All we had to do was wait for a(nother) virus or infection to breeze through and we would see if the effects would hold strong under pressure. We waited a few weeks...and David woke up with a cough...and I furrowed my brow, stared out the windows and looked for the storm clouds...I knew the drizzle would turn into hard rain...

and it did. Unfortunately, it waited until we were at Mommom's house to really let loose - but she was a really good sport about it all.

The big kids got full sinus congestion but no fever. I thought that might be the end of it as it had been days since symptoms started and Everett was happy as ever. Then, he felt warm. Then warmer. His fever blew past the 101's and settled in the upper 102's. He felt crummy and slept awhile, woke, puked, slept, and had HORRIBLE tummy cramping.

It was a rough weekend. But Brent and I did sneak off for a nice dinner and Everett started to recover after an extra night of rest in Houma. Though he's still pretty much only nursing with a few bites of solids here and there, he seems to be feeling much much better - playing, laughing and sleeping - so recovery well underway.

We came back to Lake Charles on Tuesday just in time to see the construction crew finish leveling our house (I know - I mentioned - busy). We start a sort of "phase 2" of repairs and maintenance next week. We've had a bit of a time retaining the services of contractors so I'm hoping the ones that finally did show and have been predictable will follow through with quality...
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Mary Louise and David had eye check ups on their birthday - I know I know - not very nice but it's just how things worked out. They had a special day just the same and the check ups were very quick and non-invasive so it wasn't so bad. Their eyes have remained the same and they have been cleared to go back to yearly check ups for now unless we have any concern about their prescriptions. They have done very well with glasses though we have to have the adjusted VERY frequently and, honestly, the things just slip no matter what we do. Nonetheless, they actually ask me to put them on if we forget (and we do) because they realize the lenses help them to see clearly. Nice.
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We also had a visit with an ENT per the pulmonoligist's request. (Our parting gift was the buffet of viruses discussed at the beginning of this post...) The ENT was very nice and VERY patient. When meeting new doctors, we go as a family. This can be rather precarious when we have to wait over an hour for an appointment. But, Brent and I feel it's important for us both to hear advice, suggestions and feel out personalities, so we take the plunge and the kids together.

Though she wasn't complaining or having obvious symptoms, Mary Louise had very swollen adenoids. Her tonsils were fine - very small in fact. Her ears have never given us issues. But her adenoids were irritated and large. After some discussion, we decided our plan of action would be to try Nasonex for a few months to see if it would alleviate symptoms. Surgery (removal of adenoids) is a possibility long term -but is not on the table right now for a few reasons:

1. we don't know what is irritating her adenoids. Removal would obviously give some immediate relief - but long term, symptoms would likely return because the actual problem wouldn't be addressed (swollen adenoids is the symptom)

2. Mary Louise's immune system is becoming more and more specific. This process will continue over the next few years and by age 7, if there are no more serious injuries (illnesses) to her lung and respiratory system, there is a very good possibility for her to outgrow much of this. (and it is my firm belief that with a ridiculous amount of commitment and diligence, that will, by golly, happen!!)

Therefore, if we find a non-invasive / low risk temporary solution to bridge the time gap for a couple of years, sweet girl can keep all of her parts! win!

The pulmo ran a general immune function blood test on Mary Louise as well. We don't have the results in hand, but I assume they are unremarkable as we haven't had any phone calls...we will discuss this further next month during a recheck. We will also be referred to an allergist here in town for testing there. Mary Louise is a little young, but with her history, an allergy screening would offer a more complete picture of her health and immune system. I am waiting to hear from the local office for our first appointment and we'll go from there.

If you're keeping count, we are minus a cardiologist and adding a pulmo, ENT and allergic to our doctor soup. At least the 3 newbies keep in touch and seem to communicate very well with one another...sigh.
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Everett has sort of put walking on the shelf for a bit. He *can* take up to 10 steps or so when he so feels inclined, but typically chooses to just crawl wherever her wants to travel. He does, however, enjoy doing the Evie shuffle - proudly standing in place while dancing up and down - which provided endless grins and giggles in our house.

He's climbing like mad - up the stairs, down the stairs (mostly - it terrifies me to allow this on our main steps but he has done very very well with just a few steps on porches, etc). He also gets on a off the sofa, beds, pew in our entry way, chairs and anything else he can hoist himself upon. He's amazingly careful with it all and can be trusted to navigate furniture and home very very responsibly (even though he recently learned to flush the toilet - and enjoys doing so while cramming it full of whatever he can reach. I call it House Cleaning by E and would be happy to bring him over should anyone need help clearing a room.)

And finally, Everett is officially TALKING!!!!! He can say: Momma, Dada, pat pat (referring to petting the dogs), outside "tie" or "out-tie", hot - while pointing and waving at coffee or a pot on the stove, cat "tat", bye bye, hi, clap clap "cap cap"and "nuh nuh" which is "nurse nurse". This is a really good thing because, as it turns out, our wee one is following his big brother's footsteps and turning into quite the head banger.

Oh my. This causes me more stress than I care to think about.

The one consolation is that Everett is what I would refer to as a "careful" headbanger: he typically uses a pillow or soft furniture under his head. David would wildly thrash on anything at all and had so many bruises from his fits. So, I'm grateful for the little concessions. Nevertheless, I'll be quite happy when Everett gives up his relatively new little coping skill...

Now, I suppose I'll break down and review a few past posts to see what pics I've neglected to advertise.

xo,
Heather

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