Tuesday, July 8, 2008

This picture is for Aunt Susan. She sent Faith this "Don't make me call my Aunt" shirt after giving the doctors a piece of her mind when she visited Faith last February. She made the doctors promise not to poke her on her birthday. :) Needless to say they listened! (And are listening now!!!)

Today Faith had a bronch (aka they took a look at her airway....) we were a little unsure of what we where going to see. The news was pretty good- surprisingly the swelling has gone down a little bit. We are a little unsure if this is because of the steroids she was recently on, but our ENT also pointed out that her being sick recently would have made them more inflamed, despite the steroids. The doc even let a out a shout of glee (ENT's are definitely a different breed...) when he saw her vocal chord! He wasn't sure if they were moving (which is a whole 'nother drama we will deal with later) but the edema had subsided enough that he could see them. :) This is a positive sign. SO we go back in three months to see what he sees again. SO all in all it was a good result.

Faith had an eye exam a few weeks ago, my apologies for not sharing that info with you! Basically her right eye (the eye that she can see out of..) has gotten a little bit worse. It is a little more nearsighted then it was last February. Her opt. doc said she will probably need a new prescription for her glasses in about 6 months..(hmmm..I wonder what color we should get ...suggestions...?) Her left eye is still the same; no vision. I don't know if we shared this information with you all or not but Faith is at risk for going totally blind. Because of her advanced ROP and the two eye surgeries that saved the sight she has now (without a doubt she would be completely blind if it had not been for those surgeries...) her retinas are hanging on by "threads." If the retina detaches there isn't anything they can do. This can happen a week from now...15 years from now...or never (we'll take the third option please!!!!) Knowing this it is a blessing that Faith sees what she does now. She definitely copes with her vision loss- most people wouldn't even know she was partially blind if we didn't tell them. It is apparent that Faith can't see more than 4-5 feet in front of her- even with her glasses. If she is in her crib and I am at the door, she can't see me. The good news is we have a lot of good people working with her to optimize the vision she does have. She has a vision therapist from the Anchor Center for Blind Children that comes out and teaches us how best meet Faith's vision needs. I was looking forward to going to Anchor with Faith this summer for their Toddler group- but the MRSA police blowed the whistle and we can't. :( I hope all of this MRSA nonsense is cleared up before Faith goes to preschool because we would love for her to go there!!

So this post was a little random- I don't know how we made it from bronchs to eyes to MRSA but oh well- just wanted to keep you all in the loop!


Shylent said...

First of all woohoo on the vocal cord sighting :o) Second of all I adore that shirt ... too cute.

I find it amazing how our little ones can adapt to their various issues with such ease. Of course, at this age the don't know any different but I am amazed none the less. :o)

Janay said...

Wonderful news on the bronch, ya never know what they are going to say and what a relief it is when it is good news :0)

Jen, I sent you an e-mail to the address in your profile here. We are ready to party! Call or e-mail me back if you get a chance.

Anonymous said...

Well what GREAT pictures. I just back from Port Aransas ( near Corpus Christie). We had a blast at the beach and Aunt Susan wishes you were there!

LOVE the pic of you in your shirt..YOU KNOW you can call Aunt Susan ANYTIME if you need me!

Now on the glasses colors...hmmmmm..I LOVE the pink princess color you have..they look GORGEOUS LIKE YOU!

Also great on the vocal cord stuff..see it is all in Gods time!

We love ya!

Aunt Susan and gang

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