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!
Vanessa
Friday, June 28, 2013
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....
Vanessa
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....
Vanessa
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!
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!
Saturday, May 18, 2013
Friday, May 17, 2013
The End....
We've reached... The end.
The end of straightening Mira's legs. I can hardly believe it.
There were many ways to start this post... We have such an array of emotions right now. We are grateful, this has been an amazing journey since October 2012. At times I can hardly believe she is the same child. Yet at the same time I feel a sense of loss for her, she lost an identity (good or bad) that she carried since birth. My understanding is that if you're born with a disability in China- that becomes "who you are", Sometimes literally by name... can you imagine?? We feel blessed to have the team of doctors & nurses that have cared for Mira, not just as a patient but they are caring for her as their own. They serve with the same hearts as missionaries. We are blessed because we know these days the medical field is FULL of staff that treats you as a number... Often with $$ signs attached. You find a very smart/knowledgable doctor who has TERRIBLE bedside manner OR you find a very nice/personable doctor who has questionable skills. When you know you have a good thing... You stay. Even if it means you travel 1800 miles for an X-ray. I know I've boasted him up before & as Christians we aren't to place our trust in people... However I know Dr Standard is here being the hands & feet of Jesus. Yes he gets paid but he skillfully treats with his big heart.
This morning he removed the fixator from Mira's left leg. It went well, the bone looks good, the infection appears to be under control. The only small glitch he found is that now her legs are straight it appears her left femur is turned in a bit making her a bit knock kneed. So he asked permission to place a small plate on her left femur that would stunt the growth on one side of her femur so as it grows it will straighten. This plate will be in place 8-12 months & then removed along with the rod in her left femur.
She seems to be doing great!
The end of straightening Mira's legs. I can hardly believe it.
There were many ways to start this post... We have such an array of emotions right now. We are grateful, this has been an amazing journey since October 2012. At times I can hardly believe she is the same child. Yet at the same time I feel a sense of loss for her, she lost an identity (good or bad) that she carried since birth. My understanding is that if you're born with a disability in China- that becomes "who you are", Sometimes literally by name... can you imagine?? We feel blessed to have the team of doctors & nurses that have cared for Mira, not just as a patient but they are caring for her as their own. They serve with the same hearts as missionaries. We are blessed because we know these days the medical field is FULL of staff that treats you as a number... Often with $$ signs attached. You find a very smart/knowledgable doctor who has TERRIBLE bedside manner OR you find a very nice/personable doctor who has questionable skills. When you know you have a good thing... You stay. Even if it means you travel 1800 miles for an X-ray. I know I've boasted him up before & as Christians we aren't to place our trust in people... However I know Dr Standard is here being the hands & feet of Jesus. Yes he gets paid but he skillfully treats with his big heart.
This morning he removed the fixator from Mira's left leg. It went well, the bone looks good, the infection appears to be under control. The only small glitch he found is that now her legs are straight it appears her left femur is turned in a bit making her a bit knock kneed. So he asked permission to place a small plate on her left femur that would stunt the growth on one side of her femur so as it grows it will straighten. This plate will be in place 8-12 months & then removed along with the rod in her left femur.
She seems to be doing great!
Thursday, May 16, 2013
East coast-bound...
We r heading back to see Dr Standard & we r scheduled for removal tomorrow morning... Stay tuned for the big reveal!!!
I leave with a reminder of before...
I leave with a reminder of before...
Tuesday, May 14, 2013
Seriously???
For months my hubby & I have been planning a return trip to MD for a family wedding. It was a difficult decision... Mira & I have never been apart. My mother in law offered to stay at our house so the girls will be in familiar surroundings.
Hubby & I were planning a long weekend of reconnection, rest, fun... Stress free.
Well... That was MY plan.
On Friday am Mira woke up complaining of being "sick". When I touched her she was warm... Sure enough 101.5 I dosed her up with some meds & kept her home from school. As the day went on she acted better but began to complain of pain in her leg. Greg & i left for MD. Well to make a long complicated story short, Mira spiked to 103.8! After speaking with Dr Standard he said she needed to go to the ER... Just what I want to throw on my MIL!! First they tested her for strep & she was positive. They were planning to discharge her on oral antibiotics. Her blood work came back with elevated white blood cells.. This landed her 2 1/2 days in the hospital on IV antibiotics! Come to find out her strep throat spread to her pin sites!! Praise God this infection was caught & is responding (slowly) to meds. We are scheduled to leave Thursday morning to go back to Baltimore for removal of her fixator on Friday! We are STOKED to see Mira metal free with STRAIGHT legs. I will be sure to post before & after photos.
If you think of Mira over the next few days please say a prayer for her.
Oh & by the way.. The weekend get away was ANYTHING but relaxing! Try stressed out from beginning to end! I feared Mira would suffer this separation & we could lose some of the amazing bonding that has happened... But God is faithful. He heard our prayers & calmed her heart!! Thank you!!! And thank you to Kara & Joe for taking good care of all 4 girls!!
Be blessed!
Vanessa
Hubby & I were planning a long weekend of reconnection, rest, fun... Stress free.
Well... That was MY plan.
On Friday am Mira woke up complaining of being "sick". When I touched her she was warm... Sure enough 101.5 I dosed her up with some meds & kept her home from school. As the day went on she acted better but began to complain of pain in her leg. Greg & i left for MD. Well to make a long complicated story short, Mira spiked to 103.8! After speaking with Dr Standard he said she needed to go to the ER... Just what I want to throw on my MIL!! First they tested her for strep & she was positive. They were planning to discharge her on oral antibiotics. Her blood work came back with elevated white blood cells.. This landed her 2 1/2 days in the hospital on IV antibiotics! Come to find out her strep throat spread to her pin sites!! Praise God this infection was caught & is responding (slowly) to meds. We are scheduled to leave Thursday morning to go back to Baltimore for removal of her fixator on Friday! We are STOKED to see Mira metal free with STRAIGHT legs. I will be sure to post before & after photos.
If you think of Mira over the next few days please say a prayer for her.
Oh & by the way.. The weekend get away was ANYTHING but relaxing! Try stressed out from beginning to end! I feared Mira would suffer this separation & we could lose some of the amazing bonding that has happened... But God is faithful. He heard our prayers & calmed her heart!! Thank you!!! And thank you to Kara & Joe for taking good care of all 4 girls!!
Be blessed!
Vanessa
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