Monday, June 11, 2012

Happiness Week 23

We had a crazy week: Two ophthalmology/surgery appointments to discuss Ainsley's upcoming eyelid surgery, a follow-up with Ainsley's local otolaryngologist to discuss the Cincinnati trip (he's going to do a T&A surgery on Ainsley in July), physical therapy, Adrian's last baseball game, Evie's dress rehearsal and ballet recitals (2), a couple play dates with new friends, a birthday party(and one we couldn't make it to, sorry), a school dance and the kids were in a play (The Adventures of Mona and Delia). Aside from all this Steve's new job requires he works 60 hours per week. So when he wasn't doing these things with me he was working. Which means I was pretty much flying solo and even though he's the one earning the paycheck we've both been "working hard".  We're all pretty exhausted and are ready for summer break which will be here soon.

This Friday the 15th Ainsley has her eyelid surgery. After our appointments last week I felt much better about it. Though I admit I'm getting a little nervous again. The hope is that this is the last eye related surgery she will need, keeping in mind that her eyes cannot be restored to their prior appearance. The brow prosthetics and tarsal switch were all in preparation for this final surgery, the frontalis sling, and soon we will see what we've been waiting 5 years for. Please pray for positive results and that the surgeon really hears me when I say I don't want any more eyelashes removed when he fixes the corner of her left eye(from the last surgery).

I hope you have a good week, whatever you are up to and that you find your own moments of happiness.
Daily Happiness Photos - Week 23

06/04 Hot Chocolate
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Sometimes (a lot of times, actually) it really is the little things. I love that hot chocolate can make my kids so happy. We keep a family size tub in the house at all times so I'm always prepared. It can turn a bad mood around in a flash.

06/05 A Happy Patient
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After everything that my dear Ainsley has been through I think it's some kind of miracle that she can be such a happy patient. You really wouldn't know that she was here to see the man who cut her eyelids apart a year and a half ago. Sometimes my heart aches for all she has suffered through but I am eternally grateful that she is still so happy despite it all. And I was also quite proud that she was able to climb up into the exam chairs by herself this week. And she knew she was supposed to sit there. And she was proud. Rightly so!

06/06 Fun and Effective Physical Therapy
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Ainsley's been in therapy since she was 4 months old. Seriously. It's been that long. We've had some great therapists.....and a few who drove me a little crazy. After many months of making arrangements we are seeing someone new through Children's Hospital (in addition to the OT/PT & Speech that Ainsley gets at school) and she's great. Ainsley's been having fun and that makes me happy to know we are working toward some functional goals (like standing and getting her legs to straighten) but are having fun while we do it. Although she missed most of the time she did get it in the bin a couple times. Yay Ainsley! And I managed not to be late and even got there early this time. Yay me!

06/07 Vegetables
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I guess I'm really weird because I really like vegetables. A lot. If they are around I eat them happily but for some no good reason I've lately been out of my habit of always having them ready to eat in the fridge. Even the kids will eat them if they are there. I'm going to get back in the habit. Now.

06/08 Clever Home Therapy Solutions
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 Ainsley's PT wants her to walk around on her knees. We are so super busy that the best home "therapy" is worked into our daily routines so that it is naturally built into our days(like leg stretches during diaper changes or oral motor during dinner, etc.). I started a new routine. Ainsley loves to watch Netflix (Curious George, Kipper or Calliou) when she gets home from school. After a busy day I think she deserves a little down time.  I picked up some Beanie Babies and a case at the GoodWill for therapy and every day I'm making her walk each of the animals across the ledge into their case. Ideally I'd like her to make the animal sound while she does it but she's not quite there yet but she is able to identify the animal sound. For example, I ask her to take "the one that says oink", and she'll walk the pig across. When she's done walking all the animals across she gets her video and boy is she happy. 

06/09 Ballet
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When I was little I wanted to be a ballerina. If you want to know a secret I still dance around the house sometimes when no one is watching, which is a little embarrassing for a woman my age. When I found my birth  parents as a young adult  (I was adopted) I found out that my birth mother danced ballet for many years and so did her mother. I regret that as a child I was allowed to quit lesson after one season. Evie started begging me for lessons when she was 2 and was enrolled as soon as she was old enough, at age 3. Now that seems crazy and I can't believe she's been dancing for 8 years. Can that be right? Seeing her up on stage makes me so happy and proud. 

06/10 Another Play With Friends
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Two summers ago we (read Evie) had the crazy idea to do a "theater" summer camp at our house with some of Evie's friends. Evie wrote the script for the play based on the movie and directed the actors(with a lot of help). During that week the kids rehearsed and made props and picnicked on the grass.  Some of those friends have gone on to make their own plays. Even though we moved to the eastside they have included Evie (and Adrian) and it's been a great excuse to get these friends together for rehearsals. As the group moves on to middle school I hope they will always remain friends and look back fondly on these experiences.

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To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.

3 Comments (We love your comments.):

Anonymous said...

Wow, I can't believe Ainsley's eyelid surgery is Friday! I wish you guys the best of luck! I will keep you and your family in my prayers and pray that all goes well for you and Ainsley. It would be so awesome if Ainsley could lift her eyelids to see better. Not only that, but we would be able to see those beautiful eyes of hers! Best of luck to you! From Abby <3 :)

Anonymous said...

Linnae and I will be driving to Cincy on Friday to see her surgeon, so we will have LOTS of time to send up prayers and good thoughts for Ainsley. I'm excited and nervous for you--hoping everything goes incredibly well! Hugs to you both...

Jen and Linnae

P.S. Linnae asks me to show her the picture of her and Ainsley EVERY day--so glad we got to meet.

sbodger said...

Small world. Here I sit doing an international internet search on ptosis and after clicking through a couple of medical sites, yours is the first blog that comes up. Within a few minutes of reading I came across your picture of Mt Rainier and yet the mentions of Cincy through me off. And yet a few pictures later there was our SC's PT, Connie. Ha! Local!

I have 2 boys with special needs, 1 foster-adopt and 1 bio. We've been at Children's since my oldest was diagnosed with a highly malignant brain tumor at 7-1/2 months. That was 1998. We've done craniotomies, trachs, swallowing studies, VP shunts, g-tube button placements, T&A, orthotics, eye surgeries and so many others.

The newest addition came to our family in October. He was 5, and reportedly 'low needs with hypotonia, speech delay, and asthma'. Ha! The kid is non-verbal. He also has ptosis and the prior foster family had surgery done last July. It failed. No improvement. So, this Saturday morning I'm looking around the 'net trying to figure out what I can expect with the next surgery in 9 days. I realized I know so little about what's coming...

And Ainsley just had her surgery yesterday?? Wow. Weird to run across something so current. Seems like searching blogs for info always ends up with pertinent posts from years ago. Not this time!

Ainsley and your family will be in my prayers. Seeing your daughter's eyes light up with her smile would be such a gift for all you've given to her sweet life.

I'll be back!
Thank you for sharing,
Stephanie

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