Home again and the feelings it brings

April 27, 2015/Living with Special Needs

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We’re home after a few days in DC with Ryan for testing and a heart catheterization.  I wrote last week that I was a bit nervous this time, mostly in my stomach, less in my brain. I started stress eating on Tuesday, but weirdly didn’t crave any of the junk I’d been wanting on Thursday or Friday. Even today, back home and coming down from the emotion, I really just want an egg (all gone!), not the chocolate or chips or from early last week.

It’s weird to me how anxiety works.

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Practicing “blowing up a balloon” before the cath Friday morning

I’ve come to expect a few days of crashing upon our return. The oldest hobbit seems to be much like me. Great. She did well over the weekend with friends, but was so, so happy when I picked her up.

Luckily, our first day back was Sunday and Henry was here to field the kids while I was irritable and tired. So very tired.

And today, I look at the laundry and grocery shopping that needs done and it makes me feel exhausted just thinking about it. But one foot in front of the other and it will all get done. Trust me. I’ve been here before and I know it’s a passing feeling.

Luckily, most the kids are in school today and I’ll have some quiet time (hopefully) this afternoon while the baby sleeps.

As for answers from the few days away – – Ryan’s heart looks as healthy as it can. No collaterals this time, which if you know anything about collaterals, is a good thing. It tells me his blood pressure is more stable and all the blood is flowing where it should.

His lung pressures are down to 15/16, which is an acceptable range to move forward with surgery. With Ryan anything is risky, but these are doable numbers. Much better than the 22 of two years ago. The team is talking about him today in their conference so we should have a concrete answer in the coming week.

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With daddy in recovery after the cath

I’ve been in limbo planning for the spring and summer not knowing how well the cath would go or if we are scheduling surgery. Now, we can start putting some things on the calendar again until his surgery date (if that happens).

As for his neuropsychological testing – the docs there confirmed a lot of what we are already seeing here at home and at school, and found some other areas of weakness I wasn’t sure of. We’re waiting on the formal report from them on what adaptations and therapies we can use to help Ryan process information effectively.

I can’t remember what I’ve posted about, but basically, CHD kids typically have cognitive affects from having decreased oxygen to their brain during development and after, so Ryan’s cardiologist is working with neuropsychologists to try and help fill in the gaps.

This was a bit overwhelming for me, as my personality is to strive, strive, strive….  striving will only get a person so far when their brain only accommodates so much. More on this later when the report is in my hands.

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Outside the Ronald McDonald House

Okay, my time is up for now. Piper needs some attention…. she has a cold and is Miss Cranky Pants this morning.

I have something fun planned for Wednesday. I think you’ll like it.

 

Comments (5)

  • Heather from Ontario Canada / April 27, 2015 / Reply

    What wonderful news Leighann. One step at a time today. If I could stop in and have coffee with you ( and help with the housework of course) I would !!

  • Lisa McGriff / April 27, 2015 / Reply

    Sounds like you got a good bit of good news, some confirmation of your “mom” intuition, and a tentative plan for the coming months. I remember making so many “peace of mind” visits with the children over the years. Know that I will be praying for Ryan and for you! Much love from your Alabama friend!

  • ann / April 27, 2015 / Reply

    Praying that you are living in “contentment” in the midst of “strive, strive, strive”

  • Linda / April 27, 2015 / Reply

    Sounds like a good report…and now you can try to re-coup from the stress!Thanks for the update. (Hope Piper gets rid of her cold soon.)

    Love and Prayers,
    Momma Linda

  • Becky / April 27, 2015 / Reply

    love the pix of Ryan with ole Ronald McDonald. That miracle boy of yours always has a smile – I also have no doubt that the attention you, Henry and your girls give to Ryan, if he is running a little behind he will catch up. God’s got this! As always, love & prayers are going up for all of you from North Carolina. Becky

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