Friday, November 9, 2012

Thanksgiving Days 8 and 9 - the eye doctor and baby Beau

Yesterday I had a very upset baby all day, and Sadie wasn't feeling well either after getting up super early and having her eyes dilated.  ...but I'm not thankful for either of those things!!

Day 8 - I'm thankful for Chelsea.  Chelsea is our respite provider (read babysitter) and she is amazing.  Her schedule is flexible because her other job is working for her parents at the store they own.  She can handle anything Sadie throws her way (which really isn't a lot), and she loves Sadie.  She and I have also become friends since she hangs out at my house while I work, and she accompanies me to therapies and doctor's appointments.

Yesterday she showed up at our house at 7:00 in the morning (which is super early considering she lives an hour away) to help take Sadie to the eye doctor.  Seriously, I don't think I could have done it without Chelsea.  She gets Sadie in and out of the car, she wheels her while I carry Ezra, she changed her when Sadie peed through her diaper... and she managed Sadie tube feed, which we had to bring with us since we left so early in the morning!

We are so lucky to have such great help.  I don't know what we're going to do when the day comes that Chelsea can't do it anymore!!

Eye doctor update:  He did a full exam, complete with dilating drops today.  He found that her nerve damage (from lack of oxygen) is NOT getting worse and has not worsened from the first time he saw her, so that's good.  He did say that if she starts having seizures, or has a particularly bad one, this damage could increase.  He also said that her prescription hasn't really changed since last time he saw her and that it's not a very high prescription.  However, she does have an astigmatism and he believes that is causing her vision to be blurry.  He also noted that her right eye is still drifting out and not in alignment with her left eye.  All of these things together are not providing her brain with very good visual input, which she needs in order for her vision to increase.  So, we got a prescription for glasses.

The doctor believes that Sadie's vision is strong enough that glasses will help her focus and become more fluent in her "visual language," which will allow her brain to create those synapses and be more consistent when it receives visual input.  We are also going to continue to patch just the left eye, in hopes that we can strengthen the muscles in the right one and pull it into alignment.

We will go back in January just to check up on things and see if there's any improvement.  If we don't see any, we will have a talk about surgery to correct the strabismus (the eyes not being in alignment).  His hopes though, are that by increasing her vision through glasses, and targeting that eye through patching, her brain will figure it out and start correcting itself.

I can't wait to show you what she looks like in glasses!!!

Day 9 - I am so thankful for Facebook.  I know it sounds weird, but I seriously wouldn't be in contact with as many friends or family if I wasn't on Facebook or if Facebook didn't exist.  On Wednesday, my cousin and his wife had their second baby boy.  He was born with a congenital heart defect called TGA, which means that his arteries are mixed up and his blood isn't being oxygenated.  She had him by C-section and he was immediately hooked up and taken away due to his fragile state.  She didn't get to touch him or hold him or anything (so familiar).  Today he is having a procedure done to help his blood mix so that it can carry oxygen, and they are awaiting open heart surgery.

To be in contact with my family during this hard time, and to receive updates on baby Beau, means so much to me.  I am also thankful that I can post information and updates to those who don't even know my cousin, but are praying for this baby.  I remember when Sadie was born and all the support we received from people (via facebook) that we didn't even know.  So, prayers for baby Beau, and thankyou Facebook for keeping us close!

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