Ivey is a busy bee these days. Last week she visited her ocularist and now has her new conformers. It looks like she is sticking to schedule. All things keep on track, and little miss magic will have one more set of conformers and then…..her first set of prosthetics. So before I say this, keep in mind we have developed an odd since of humor these days. There are times we either laugh or cry. Ivey’s eyes have become a subject of laughing more than crying.
So, the big debate right now is…..what color should Ivey’s eyes be? In the great big debate of babies and wondering what color their eyes will be; well, we get to choose. And since Knox and Walker do not have the same color of eyes, we can’t make up our minds. We still have a few months, so plenty of time to figure that one out.
Also, Ivey has become a little trickster when it comes to her conformers. She pops them out constantly. Where I can hardly take them out without concentration, she pokes her index finger in there and out it comes. She is sneaky about it too. She does it when you glance away or she moves her hand up to her eye very slowly; it is almost like she is pretending to sleep. Pop…it’s out. Considering that the conformers are clear, finding them can be an interesting. If someone offers to pick it up off the ground, they never quite know how or if they should touch it. It is comical to watch.
Looking forward, asking someone to pick an eye up is going to be a hoot. Better yet, imagine coming to our door and over hearing us ask the boys which one has Ivey’s eye. I can’t help but giggle just thinking about it. Lord can only imagine one of our friends’ children carry her eyes around during play dates……
Monday I also spoke with Ivey’s geneticist. She called to check on Ivey, but also had great news about research on chromosome 21 deletion. That in itself is another post for a different day. Good exciting news though.
Let’s see… This Friday Ivey will have her G-J tube changed out for a new one. That requires a trip to radiology at Scottish Rite. It is a procedure that takes minutes.
Ivey has also started swaying. It’s that side to side swaying like Ray Charles. She can shake a tailfeather--definately. Just part of her blind world. She also tries to throw herself backward when you hold her or she is sitting. If you happen to be holding her and she does this, don’t let her. It seems like such fun to play with her and let her go backward, but we have to discourage it. Ivey will have a hard time sitting on her own if we encourage it. As we all know, bad habits are hard to break. Group effort here.
Well, seems I have rambled enough. Have a GREAT day.
gwen
ps. Thanks Miranda and Sarah for taking Ivey to the ocularist for me. It was a regular visit for Ivey, but a big step for momma bear to let her go.
IF YOU ARE STILL WITH ME....GO TO EMMA'S BLOG AND VOTE (bacia)!!!!!!! REMEMBER EMMA HAS BILATERAL ANOPHTHALMIA TOO....THIS WOULD BE INCREDIBLE FOR HER!!!!!!
Confessions from the mind of this sleep deprived mom navigating the world of complex medical needs, deafblindness, and special education. And y'all, it may not always be pretty, but it's real, and it's always for the love of Ivey.
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6 comments:
Sneaky girl! OH MY GOSH. I had to giggle too...a sense of humor is A MUST! You have definitely got it! :)
And I think that is just cooler than cool that you get to pick her eye color! I think hazel is nice...then she'll look a little like a girl in Arkansas...
The pictures...they're hand-painted, cut out and put back together. The clothes are actual clothes. Fun to make! Very time-consuming! Todd does the frames, Mom holds things while I glue...it's a group effort.
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I love your sense of humor:) I'm sure it helps to deal with everything to laugh. You sure got me laughing too.I'd love to see the look on others faces when you are looking for Ivey's eye:)
You big sweetheart! Thanks for the vote plug.
I know all to well the missing eye stories. Emma would take hers out at night and chew on them. You don't often hear a mother say "We do not chew on our eyes. Spit them out right now" But you did in my house...
Congrats on the sucess with her conformers!
Thanks for stopping by my blog and comenting! :-)
Love the pictures of her with the green stuff- aren't high chair pictures always the best!? And I love the way you are laughing about the eyes... "laughter does the heart good like medicine" and "the joy of the Lord is my strength". I am so glad the Lord has blessed your household with laughter. Playdates at your house are sure to have some funny moments if an eye is on the loose!
God bless you!
Thanks so much for sharing the ups and downs of your journey so far with your beautiful daughter. I think any mom can benefit from your honesty as you share your feelings on both the good and bad days, whatever we are facing with our own children.
You do make me laugh! :) And it's true, you have to have a sense of humor to make it through raising children, but I'm learning that it's needed for ALL of our children. Not just our 2nd one. It really does sound like Ivey is doing so well, and I'm so excited for you. And to have friends who can help you with the doc visits is a complete blessing!
Hmmm. Maybe one eye of each boy's color? Just kidding! I'm already laughing thinking of one of her friends carrying around her eyes for her! We had a friend growing up who could pop out his front teeth onto his tongue, and he loved doing it for everybody.
She sounds like such a fun girl--I can't wait to meet her someday! I'm sending y'all hugs from me and Addie today :)
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