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I have a lot of disjointed, little things that I want to post.  This blog is, first and foremost, a way to document my family’s lives so sometimes the posts are just a way to jot down things that I do not want to forget.

That being said…

I miss the Florida cousins. We were lucky enough to have a month of time with them and they just went back home last week. My nephew, Roy, and my nieces, Sadie and Cassidy are really great kids and it really stinks that we live so far apart from one another.

I know that Connor really enjoyed his time with Roy.  Two boys right at that “Stand By Me” age when lifelong friendships are forged. We all know that just because you are related doesn’t mean that you are friends so it was a pleasure to see how much they liked hanging out with one another.

(left, Connor (will be 13 in 2 weeks) and Roy, right, is already 13 years old)

They had some adventures that involved an old swimming hole, long hikes and other fun stuff. It was great to look out the back door and watch them just sitting on the trampoline talking…and laughing.

I loved watching them laugh…

(my favorite photo of the summer-so far!)

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On Father’s Day morning I handed Corrigan a marker.  He has not had much success in properly using a crayon or anything like that so I was not expecting much.  I held up Mark’s Father’s Day card in front of him and, to my surprise, he scribbled all over it in a determined manner.   Later, Connor added his own sentiments to the card and we gave it to Dad later in the day.

Mark remarked that it was his very first card signed “by my two boys!”  The card still proudly sits on top of his desk.  I just wanted to mention this tiny milestone because it meant so very much to Mark.

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For months and months I have been taking Corrigan’s hands and pressing them together before I let him take a bite of food. While I hold them there I say a quick prayer thanking God for our food. At the end I really draw out the “amen” so that it sounds like Ayyy(hold for two seconds)-MEN!

When we all sat down for dinner, on Sunday, we all held our hands up to pray in a very exaggerated way (we normally do not fold out hands in prayer-we bow our heads and sometimes join hands but normally we just bow our heads) and at the end, at just the right moment, Corrigan exclaimed (his little hands clasped in a fist-so cute!) “Mayyy(held for 2 seconds)MEN!

I wanted to mention this awesome milestone because it means so very much to the heart of our family.

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A few days ago I pulled a load of very hot towels from the dryer and when I was shaking one out to fold it…a stink bug fell out, set himself back on his feet and wiggled his antenna at me. I think that he shook his front leg a little bit too. He was absolutely fine after a wash in hot water and 60 minutes in the dryer.  I officially give up on trying to find a way to get rid of the stink bugs that have become quite a nuisance in this area over the last few years.  They are mutants that cannot be defeated and I respect that. From now on, I will name them and call them my friends.

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Corrigan had a check-up at John’s Hopkins hospital today.  He did not grow any in head circumference or in length and only gained 100 grams.  This was not alarming because at his last appointment, 4 weeks ago, he grew three times the expected linear growth and gained what was expected in weight. His doctor believed him to be in a growth spurt and tried to maximize it by increasing his protein. We went back today to have his plasma amino’s drawn to see if we might need to bump the protein back if he were through the growth spurt or see if maybe we can keep it the same and he can “grow” into the amount since it was not a big increase.
I will not know those results until tomorrow.

His ammonia came back 55 which is higher than it has been lately but the wait was longer than it is locally when it comes back in the 30’s (and it always seems to come back faster when he is hospitalized so I guess maybe it is prioritized if you are “in-house?”) so I think that it probably just sat a bit before it was put on the machine. By no means is 55 a bad number for Corrigan but we have become comfortable with lower numbers in recent months and the slight bump in number kind of surprised me and gave me a queasy feeling in my stomach but I talked myself out of full-on “worry” mode because anyone can tell, just by looking at him, that he is doing wonderfully.

On July 3rd it will be one year since Corrigan was hyperammonemic. ONE. YEAR. (did I just hear an “amen!” ??) so that anniversary is always in the back of my head. As if making it an entire year means something and that I feel like, deep down, we won’t make it to that date. Which is ridiculous because it is just a date on the calendar…but I am waiting for the bottom to drop out. I still can’t believe that we went from 11 hospitalizations with high(toxic) ammonia in one year…to an entire year of metabolic stability. You can believe that we are celebrating on July 3rd should he be fortunate enough to stay healthy that much longer!

Corrigan did an excellent job on with the car travel today (we had my mom with us for the first time!) and he behaved really well in the clinic too!  He got a new Beanie Baby from the nurses for being so brave and got a special visit from the volunteer clowns. I know that some people are creeped-out by clowns but this rag-tag group of volunteers spend a lot of time in the hospital entertaining the sick and scared children.  They are amazing. I have a soft-spot for anyone that volunteers for any organization.

Corrigan has had several clown visits when “in-house” and they never ever fail to make the adults smile but, up until today, Corrigan had never really paid much attention to them. Maybe today was different because today there was a girl clown. He is a pretty shameless ladies man.

Connor grabbed some cell-phone video of the end of the performance for me so I thought that I would share it with you.

(I think that Connor was dancing with Cor while recording so it is kind of shaky…but at least it is shaky to the beat!)

That’s all for today, I hope that you have a great week!

Mindy

3 thoughts on “blah blah blah

  1. I loved this blog! I read the part to Ryan about the MAYYY Men!! SO CUTE!

    Oh I can relate to the whole ammonia testing as an outpatient. It’s always so much longer (last time almost 2 hours) before we got the results back and then it was a 55. I felt the same way about 55. It makes me quesy too. Lately Lynlee’s has been staying in the 40’s. Not sure how I feel about that, I just like the comfortable 30’s.

    You will make it to July 3rd. And oh so happy it will make you! And make me and the rest of the UCD families that you have been there for!

    XOXO- Stacy

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  2. Aww thanks Stacy. I know that I should not put so much emphasis on a specific date but a year ago the thought of being 12 months STABLE seemed so unattainable. Now that it is coming close to the anniversary date it suddenly feels IMPORTANT to make it. No real reason why…but it would just be a wonderful thing to celebrate.

    I know that you will be celebrating with us!

    xoxo
    Mindy

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  3. Great video! When they all clapped at the end, so did Heemie! haha! One year is awesome! I am so happy for you guys!! Lots of love!

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