Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Wednesday, May 20, 2009

Update on Crazy Eyes

The ophthalmologists have come and gone.  Structurally, her eyes are perfect.  Wonderful!

So, that leaves either something inter-cranial or a medication reaction.  Everyone is leaning more to the inter-cranial something.  So we will have an MRI tomorrow.  Since her trach has metal in it, they’ll have to change it out with a different type during the procedure.  Ophthalmology will start following us now.

Her fellow just shakes his head and calls her the troublemaker.

Seriously, I think we have had enough this week.  It’s Wednesday.


Anonymous said...

Prayers for you guys every day, Shelly.

Kari B.

Cammie Heflin said...

Bless this little girl's heart! She has had such a tough time lately! I am praying for her and your whole family. I am sure this is very tough on everyone!

Anonymous said...

Her eyes look the same as a video on your blog from a week or so ago after a surgery. She was having trouble focusing then too.
Poor baby. We love you!
Grandma Turpin

My name is Sarah said...

This is Joyce. OH my. I have been gone for two days and my goodness I have missed quite a lot. I think Bella is on a mission to have every specialist in the hospital get to meet her. Hugs and prayers to all of you as the days are so streaming into weeks and weeks for you.

Heather said...

Oh sweet Bella,just trying to keep things interesting in all areas,aren't you?I never have my computer when I with Zoey so every other night is my check in and imagine my surprise when I found ALL this!Sounds like the belly issues are under control.Zoey broke through her wrap very early on so she too has what's considered a partial wrap.she manages,as I am sure Bella will as well.Praying for answers on the newest eye issues.Praying for a simple explanation .. Bella and momma and dad sure deserve simple.Prayer continue for the mighty,tiny fighter Bella.

Anonymous said...

Hi there! We have been following you for awhile. We are keeping you all in our prayers. Two things I wanted to say when I saw that video of Bella's eyes: My son does/did the exact same thing! First, have the docs check her thyroid levels. They can cause this if they are not kept at the correct levels. A full panel, not just a TSH level.

Second, and I don't want to scare you, but this is what our son's seizures look like. However, he was doing it THOUSANDS of times per day. From what we can tell, it was from the two frontal lobes not developing at the same rate. (they think) I don't know if the docs would do an EEG on her while she is sedated. It may alter the results. You might watch when she does this if one side of her face twitches at all or if she has one hand that will twitch. My son would also "smile" during these episodes, so it was VERY disconcerting. The low sodium and potassium can cause seizures as well, but I would think they would be larger seizures.

Again, I am not leaving this info to scare you. Just inform. Not all DS kiddos are the same. Our son has proven that one! LOL! We will sure be praying for ALL of you.

Hugs from IL
Steph and Christopher OurLittleMan