Skip to main content

Hoot Owls and {us}

Ivey tends to be a terrible sleeper..........at night.

Ivey is nocturnal and she doesn't really sleep during the day. So what does that make her?

I guess we could chalk it up to several things. One she has to be suctioned, but that happens during the day. Or maybe, that she gets hot from her heated trach collar (HTC). Better yet, she has company all night long. Maybe it is because she doesn't see the sun rise or set. At one point, I blamed it on the LACK of NOISE during the night hours...remember the boys are asleep. I really don't think it is any of the above.

Ivey is our party girl. We are doomed. Our 14 month old is starting a precedent that probably cannot be undone. She does not need or demand sleep. Some nights she kicks so hard in her crib that she wakes me. I just heard her making noise over her trach. If she had her passy on her trach, she would be partying it up in there...loudly. I will show you a picture of that little device later. Well good night all....except for Ivey.

Oh, one more thing. Read about Emma at {us}. She is one of the reasons that I love the internet. She makes me excited about things to come. Emma also has bilateral anophthalmia, but she already has prosthetics. She also has a great imagination, so does her mom. Can you imagine trying to explain fireworks to someone who is blind?

g.

Comments

Borbe Bunch said…
So a party girl, uh?? :)
Ez Man will be up for hours during the night too...he is quiet though, if I happen to wake up, I check on him and he is often just looking around in the dark, very calm...does that make him a nerd then??? :) he he...cause he is not kicking about and making sounds?
No, really, I love reading about your life and LOVE for your sweet Ivey...it is so refreshing to read that other families have a new kind of norm that is called life for them and that they love it just the same!
:) liz
Just Tera said…
You're too kind. Emma has taught me what true imagination is I am the student in this relationship. Stars and fireworks are what I struggle with the most when trying to describe it to her.

Popular posts from this blog

And Sometimes Feeding Your Kiddo Looks Like This...

A simple sentence. No one said it to me in the beginning, but boy did that tube cause a lot of chaos. The NG tube graduated to the G-tube which morphed to a GJ- tube…. A brief history of Ivey's feeding tubes: *The NG tube was in place the first time I ever saw my daughter in the NICU.  My only memory of her without a feeding tube is them placing her in my arms immediately following her birth. *The G-tube, well, that is a story within itself.  That decision did not come lightly.  Another hole in her.  Another decision on our plate, but not really on our plate, it was apparent it was a medical necessity for her survival.  Literally to give her a chance to live.  A permanent decision.  A 5am panic attack in the Scottish Rite elevator that happened to coincide with Dr. Meyers arriving at the hospital at the same time as me.... Our intersection in the elevator set the stage for the years to follow. From that point on, he knew I was a little nuts and a lot...

BEAUTIFUL GREEN EYES........

Sibling Secret Sauce

Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling who simply needs "more". More time. More direct attention. More of more. We have now come to a fork in our road. Our boys are young men, and, our daughter is a young lady. I'll be honest, I was uncertain what life would look like once the boys left this home, once they had their own time, in their own personal sunshine. We found out quickly once Knox left for college his freshman year what that would look like. And then, when Walker left, we knew what life would feel like in their absence. There was too much space. Ivey felt it. We get many compliments about the relationship the boys and Ivey have with one another. Hints here and there that, maybe, Matt and I had some secret recipe to parenting a household with a child that is very medically complex and a very complex communicator. This is what I can tell you - there is no re...