It was that time again, time for the drive up to AI Dupont's children's hospital.
Everything proceeded as expected except this time SP needed her eyes dilated and we were not aware of that going into the appointment. If so we would have done a few things differently, such as packed more snacks, taken both Nabi Tablets and maybe Mom and Dad would have popped some Aleve-haha. But yeah, wound up kids while you are impatiently waiting isn't the best thing. On the plus the kids had more time to interact with some other children awaiting their turn in the back.
SP's little brother J-man and a little girl with facial port wine stains got to talk about birthmarks. I was actually surprised when the mother came over and thanked me for the shared opportunity. I tried my best but I think I may have blurted out some politically incorrect nonsense about all kids being "normal" at the hospital. Oops! Hopefully she forgave me that.
So the official word is the disease is still quiet!!!! YAHOO!!!! and there is no inflammation.
Now we went into this appointment expecting to talk glasses and SP was perfectly fine with that (something mommy was not when this whole ride began 2 years ago) and that was great! BUT -you knew that was coming- The Good Dr couldn't check SP's right eye to get the prescription she would need due to Posterior Capsule Opacity which is apparently a fairly common complication of cataract surgery, and with this being SP-of course it would happen to her. So now we're talking a small laser procedure to remove this scar tissue stuff, while SP is awake. Yeah........ She was not happy and her direct quote, "NO! Put me to sleep for it!" echoes my thoughts as well. That is just so much to ask of an almost 7 year old child, to sit still while a laser procedure is done on her eye. Going be asking for a lot of prayers for that one!
In addition to that she needs eye muscle surgery, which we knew about for months. The hope has always been that the eye muscle surgery and additional band keratopathy surgery could be done together, well the band is stable- awesome news! So now we don't have that procedure to contend with for hopefully a year or two. But the PCO laser procedure can be done with the eye muscle surgery...maybe. We have to wait and see what the team of Docs at Dupont think is the right way to proceed. So we will be waiting for their call to get things scheduled. We're hoping for the middle of August, let SP have tons of summer fun (she starts a 4-H camp next week, her first time!) and then lets get these surgeries out of the way before her birthday and the start of 2nd grade, both the very end of August.
(edited to add Surgery is on August 20th)
Speaking of summer fun, nothing better than enjoying the beauty of Longwood Gardens
SP has been enjoying Longwood since she was a wee little girl
Just starting out
Posts will be out of order and dealing with older issues until I get caught up and then it will be in real time :)
Saturday, July 4, 2015
Thursday, July 2, 2015
Summer Fun
This post isn't related to JRA in any way, it's just some of the fun we have been having, since school let out. The disease doesn't control SP's life and we're doing our darn-est to make sure it doesn't take away from her childhood in any way.
My baby is getting so big! 2nd Grade here she comes in the Fall!!!
We love going up to Dutch Wonderland in Lancaster Pennsylvania, if you are near there or looking for a smaller, child-oriented park to take your children to, this is it!
It was during a visit that SP got to fulfill a long time wish of hers- to ride in the back of the train! The smiles says it all :)
And what's summer without going to the local waterpark?
especially since our little pool didn't survive winter storage in our shed, oops!
SP decided that this was it, it was time to get her ears pierced! So on June 13, SP's Mimi's birthday in fact, we took her to the mall and she got sparkly earrings. She was so brave, her longtime friend Eeyore helped calm her fears.
Summer vacation isn't all smiles though, I had to use this time to point out that this was the very reason Mommies and Daddies the world over have to say again and again, "stop running!"
As someone who grew up going to the beach annually after a mind-numbing 4-6 hour drive(hey when you're a kid anything longer than 30 minutes is dull, and when I was a child AC was NOT in all vehicles) it boggles my mind that my kids are growing up as beach babes. To them going to the beach is a weekly activity.
Enjoy your summer! We are!
My baby is getting so big! 2nd Grade here she comes in the Fall!!!
We love going up to Dutch Wonderland in Lancaster Pennsylvania, if you are near there or looking for a smaller, child-oriented park to take your children to, this is it!
It was during a visit that SP got to fulfill a long time wish of hers- to ride in the back of the train! The smiles says it all :)
And what's summer without going to the local waterpark?
especially since our little pool didn't survive winter storage in our shed, oops!
SP decided that this was it, it was time to get her ears pierced! So on June 13, SP's Mimi's birthday in fact, we took her to the mall and she got sparkly earrings. She was so brave, her longtime friend Eeyore helped calm her fears.
Summer vacation isn't all smiles though, I had to use this time to point out that this was the very reason Mommies and Daddies the world over have to say again and again, "stop running!"
As someone who grew up going to the beach annually after a mind-numbing 4-6 hour drive(hey when you're a kid anything longer than 30 minutes is dull, and when I was a child AC was NOT in all vehicles) it boggles my mind that my kids are growing up as beach babes. To them going to the beach is a weekly activity.
Enjoy your summer! We are!
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