Thursday, June 2, 2011

Is it really June?

With the end of the school year festivities piling up like crazy coupled with an upcoming ballet recital for the middle-un, our life looks like most every other comparable family during this hectic time of year. But add in the littlest little-un with his copious specialist appts that seem to last at least half a day that somehow got added on during the last two weeks of school plus another upcoming 6 hour gastric emptying scan along with a CT of his lungs and sinuses...well, all dat just adds fuel to the ever growing fire of insanity that we call our life right about now...And then, just to give misery some company, add in a total house makeover...complete with painting and decorations and brand spankin' new carpet throughout the entire house. Well, that just confirms our stupidity to schedule such foolishness during one of the busiest times of the year. It's purdy and all that, but we are so darn exhausted and ragged that having time to sit back and enjoy it all seems to be weeks away still.
I have to admit that I LOVE our new carpet. And I LOVE my husband for not fixing his pay stub to where we wouldn't get a good sum of change each spring from having too much withheld throughout the year. This is the best income tax carpet I have ever laid eyes on. When we moved into our house over 7 years ago, one of the only downfalls was the horribly damaged and stained carpet. We merely shrugged our shoulders and said that we would replace it once the kids stopped peeing on the floor. And so, that was our plan.
Along with the rule of "Thou shalt not wee-wee on the floor", we have implemented other widely known rules of "thou shalt not carry thy Capri-Sun past the table" and "thou shalt not trance through the house with sand, mud, nor debris on thy footies". I am now one of "those moms" who really would rather the kids take off their shoes at the threshold and tip-toe through the house, lest they knock any dandruff or dead skin cells onto our fresh flooring. I am also test driving a new set of shock collars for the chillens that they must wear any time they have food or drink in hand, so to keep them in the confines of the invisible fence that encloses around the kitchen. It's a great little discipline tool. You should hear them yelp each time they walk too close to the doorways. Fo' rizzle though, it is really nice to have new, squishy carpet that makes you want to bounce with each step. I am so thankful that we were able to improve the house in that way.
Nafey boy had an appt with our local immuno on Monday. In the paperwork I have to fill out each time I see her, one of the questions was "Is your child better, the same, or worst than their last appt with us?" Without much thought, I immediately circled "the same". I mean, he seems the same as last year...still going strong, smart as a whip, ornery at times, active for the most part...yep, seems the same as last year. But once I started talking to the nurse practitioner and doctor and started mentioning that since we saw them last a year ago, he has had problems with iron deficiency anemia, hyperammonia, increased GI dysmotility, and had an increase in his O2 requirement, they laughed at the fact that I had thought he was "the same". But in all honesty, he seems the same to me...he's still Nathan...the rest is semantics. I guess it is all a matter of how you look at everything. Anyway, our immuno brought up an excellent point in that all of our doctors here have always assumed that Nate's breathing issues were a result of respiratory muscle weakness, but no one has ever really looked at his lungs to rule them out completely. She is right on the money with that. In fact, I asked a couple of years ago if we could do more testing on his lungs to make sure that we weren't missing anything there, but it was strongly assumed that his retractions and tachypnea were a culmination of muscle weakness and metabolic stress...which is most likely still the case, as it makes the most sense. However, since our immuno wanted to take a closer look at his sinuses since he has had a few sinus infections along the way, she said that she wanted us to get a clearer picture of his lungs as well...hence the CT of his sinuses and lungs. The little guy also has appts with GI and our surgeon coming up next week where we will plan the tube placement. It will more than likely be the end of June of first of July, as they gave us permission to wait until we got back from Marco Island to go through with the surgery. Emma also has her ballet recital next Saturday, and she won an award for "Most Inspirational Student" in her dance class. I am so proud of my little gal. And Abby's last day of school is Tuesday. Man, this has been a crazy few weeks. (Pics from our trip to Augusta/Middle GA; Memorial Day Weekend 2011)


Kyla on June 3, 2011 at 8:34 PM said...

We just made it through our last stretch of school year craziness! Summer is here!

Good luck with the scans. Hope they go well!

Jenna on June 4, 2011 at 3:57 PM said...

Hi Nathan
My name is Jenna and I came across your site. U are a courageous, strong and determined fighter. U are a brave warrior, smilen champ, inspirational hero. U are a Super Trooper, A tough Cookie and an amazing, special and precious gift.
I was born with a rare life threatening disease, and I love it when others sign my guestbook.

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