Tell us why Charlie Claire can get labs drawn and get a new IVs put in without FLINCHING but take her to the eye dr and put some drops in her eyes and she FREAKS OUT?!?! The picture above was taken BEFORE there was any mention of dilating her pupils! :)
The appointment went pretty well though if you take out the screaming baby! The dr (who is SUPER nice!) said that overall her eyes look healthy. When we saw the dr in December, C had a slight astigmatism in each eye. The left eye stayed the same and the right is slightly worse. He would like to give C a couple more months to heal and develop before deciding if we should put her in glasses or not. Right now he said she is borderline for needing them so when we go back in July we will see if it is improving, staying the same or getting a bit worse. As far as the vision loss in the right side of each eye...he said that it is great that Charlie Claire had the surgery when she did because her brain is still so young and developing that another area can make up some of the deficit. It wouldn't take over all of the loss but instead of being completely gone she may just have an impairment...bottom line is that you see with your brain. We just need to wait and see what actually comes of all this (something I am not very good at!).
The past few days have been a tad crazy as we try to settle back into things...it still seems that there is a big disconnect between us and the outside world...I promise, we are working on it!
We have said before that the support we have gotten the past few months has been amazing...BEYOND amazing. Jason and I came across this quote today that made us think about everything people have been doing for us and Charlie Claire...
You can't live a perfect day without doing something for someone who will never be able to repay you. ~John Wooden
Thank you for writing me! Did you ever get my message I sent to you on your blog? I posted it and then it said something about logging in and it was before I started a blog myself. I wasn't sure you would have gotten it. Anywho! It's so nice to talk to a mom who knows what I'm going through. There's this instant bond. It's a group of mom's I wish I wasn't apart of but I am so thankful I'm not alone in this! How is your gorgeous sweetie!? ....Honestly I can't help but cry now...our precious little babies shouldn't be going through this! What I wouldn't do to take this from her and bare it myself! Riley had a bad seizure this morning. I just held her and tried comforting her till it was past but this anger filled me as I thought what these horrible seizures and this cruel disease was doing to my helpless daughter. (I have a lot of good days, and then I get some like today that just trip me up and land me on my back.) So yes, I was both disappointed and relieved with the news to See more... postpone her surgery. Disappointed because I fely emotionally and mentally ready but relieved because I had more time to give her a better chance. The decision was an easy one to make. As long as the seizures weren't life threatening we weren't going to chance a possible life threatening surgery until the surgeon felt more comfortable with it. She's been sick and having a hard time eating so I'm afraid we're taking some steps backwards but hopefully we can catch her up again and surpass their goals. I feel for you, mama..Is there anything you need!? I know we're states apart but I'd love to help in anyway I can. Let me know. I'll be praying for you and Charlie Clair! Lots of love! ~Kami
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