Friday, June 28, 2013


The results of Mira's MRI showed No tumors!!!! There were a few abnormalities noted but nothing that is crisis related.
We feel such relief & gratitude... I couldn't imagine it being different especially after all she's been through!
Have a blessed weekend!

Wednesday, June 26, 2013

The unexpected...

I neglected to mention in my last post (because i thought it wasn't a real concern) that the eye doctor detected that Mira's blood vessels that feed her optic nerve were swollen. She said it is very possible that it is "pseudo edema" which just means it is for an unknown reason... She followed up saying that we will just monitor it since she has no symptoms. She also made me promise that I wouldn't google it! She said if I did I would diagnosed her with a brain tumor.

Last week Mira began complaining of headaches, after 3 days I called the eye dr and report this to her. It just so happened that day we were seeing Dr Hink who is the eye plastic surgeon. So between the 2 drs they agreed there was enough to support a MRI, so it was scheduled for Monday at 7am. That's quick in my opinion! Perfect!!

So on Saturday we noticed Mira was not walking properly. She was nursing her left foot, so I asked her about it & she said it hurts. Well it had a large puffy spot just below her 3 middle toes on top of her left foot. We gave her some ibuprofen & figured the swelling would go down over night... No such luck! On Sunday she woke up with it still swollen except now she wouldn't walk on it. After church on Sunday I decided to take her for an X-ray. It seemed to be mimicking a stress fracture. X-ray did not show a fracture but did reveal osteoporosis in that foot. Strange for a 7 yo but she is predisposed to this due to her diagnosis if Schwartz jampel syndrome. They recommended we follow up with the ortho team here at children's. we did & it was decided she likely has a stress fracture, we are attempting to keep it elevated & use ibuprofen. If it isn't better then she can be seen again tomorrow to get a cast.
In the meantime we attempted to get her MRI done on Monday but the wiggle worm wouldn't hold still! Sooo... We are at children's now having the MRI done under sedation!

I should have results this evening & will post them as I know. I'm asking for prayers during this time. I know she's a child of God & He loves her more than I do....

Saturday, June 8, 2013

The next phase...

When we adopted Mira we knew she would need some work done to her eyes but we didn't know the whole story. Fortunately we have wrapped up the orthopedic work for now. We had an appt at the eye clinic last Friday. They determined Mira is legally blind in her rt eye. The good news is they are able to correct with glasses to 20/70. Because Mira's eyes are so small, she learned to use the eye that is most open which is her left eye. Her brain has been trained to use her left eye therefore causing her right eye to not work. With dedicated patching & surgery to open her eye lids we are hopeful to train the brain to make that eye work. We will be moving forward with care to treat her eyes as soon as possible. The first step is glasses which you will see below, then we see the plastic surgeon on June 20 & begin patching around the same time.
As for her orthopedic work she is doing great, you can see below she's been swimming, running & loving life!! She even learned to play corn hole with grandma!
Praising God with thankful hearts for blessing our family with Mira!