June update

Corrigan’s two-week summer break is over and the little guy started the extended school year program on Monday.  He participated in this same program last summer and while most kids would rather take a beating than attend school in the summer, for a child like Corrigan this kind of school schedule is ideal.

The two weeks that he was home full time were difficult for him because he doesn’t understand things like “summer break” and thrives instead on routine.  Corrigan pays no mind to the calendar, he wakes every single day (weekend or not) and is ready to go to school.  During his brief break, he couldn’t understand why were not putting his shoes on and grabbing his backpack each morning and the total removal of his normal schedule made him cranky.

He is heading to Kindergarten in the Fall and will be required to attend full-day.  For the last two years he has only attended PreK for 3 hours a day, and would still come home and take a nap.  Summer school is almost three hours longer than his PreK school day and only an hour shorter than a Kindergarten day, so the hope was that this summer would help stretch his tolerance out in anticipation of the longer school day next year.

So far, so good.  Both days this week, he has hopped off of the bus happy as can be, but worn out.  He rips his shoes off the moment he gets inside and races up to his bed, where he tosses himself onto his pillow and grabs his blanket. He sleeps hard for a few hours but wakes again in a great mood.

Did you catch the part about him hopping off of the bus? Yep, I agreed to also allow him to be transported both ways to summer school,  again in anticipation of the Kindergarten requirements and he really loves the bus, so there hasn’t been any issue there either.

This also means that I have had to turn over control of his lunch meds and tube feeding to the school nurse, but after a day of observation it was clear that she had it all under control and yesterday I chewed my nails around noon, praying that all went well and that his medicine was administered. For the first time in his life, someone other than his mom, dad or big brother took over this very crucial step in his day. He will not normally allow others anywhere near his g-tube, but his fondness for Nurse K is well-known and he seems to trust her implicitly, so I suppose I have to type it again….so far, so good!

We also lucked out because he has the same summer-school teacher as last year, so there was no need to scare the crap out of someone new with all of the rules and instructions that come with Corrigan. He has an amazing memory for people and places, even if he has only met or visited them once, so he is comfortable because the school, teacher and nurse are all familiar to him.

It makes Mommy quite happy too.

photo (52)

In other news, we finished up our participation in the clinical trial for the newly approved drug that he takes, and while we will miss the kind and compassionate people at Children’s National, in Washington, DC., I will not miss the crazy traffic (and cyclists!) on the way in.  It was as good an experience as anyone could hope for, and we certainly are pleased with the drug itself, but it was a lot of time and mileage running three hours down the road for trial appointments and then also fulfilling our regular appointment needs at Hopkins in Baltimore.  We really are fortunate that we live close enough to drive to two such highly-acclaimed facilities though. I cannot say enough good things about every single person we encountered at CNMC.  There really is a big difference between a large, general hospital and a Children’s hospital, there is something extra special about the people there in DC.

For now, Corrigan is on the newly approved drug, but we were given warning that the first round of insurance approval was not going to be in our favor.  Nearly all of the other UCD families I know have received their approval through their insurance, but somehow I knew were would be jumping through the most hoops.  People told me of the “Mooney luck” only weeks into dating Mark (20 years ago), and it never lets us down.  Well, scratch that, the “Mooney luck” is all about being let down, ha!, but nothing to do but pick up, dust off and try again.

Otherwise, our days are pretty much the same here.  We haven’t even made it to the lake, or swimming pool this summer. Corrigan had this odd, low-grade fever that kept poking through his ibuprofen doses last weekend, and the weather was great for swimming, but not for fevered little boys, so maybe this weekend we will finally be able to break out the sunscreen and swim trunks and get our heads wet!

Next up this summer….Connor turns SIXTEEN.  That’s a big one to celebrate, and I can’t wait!

 

 

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