I went over to Jed and Kendra's on Monday, the 17th, to take Meadow and Dexter for a visit. With the massive doses of B-vitamins and a seizure medication that Kendra needs to give to Leela seventeen times a day, on top of breastfeeding every two to three hours, it's been a lot to juggle so Meadow and Dexter have been staying at the farm with "Grandma and Grandpa".
Leela seems to be doing quite well, all things considered, and her dad even thinks he saw her smile last Sunday, although she still doesn't cry. Ever since the MRI that initially caused everyone to realize there was a much greater problem than lazy eyes Leela doesn't cry. The MRI removed all of the B vitamins from her body and may have caused serious losses to her body/brain.
Anyway, I took a few pictures and I thought everyone might enjoy getting to see them.
Leela. Notice that her eyes are open, which is a treat since she is often sleeping.
Mommy holding Leela. :)
Dexter, Leela and Meadow! Very cute kids, if you ask me!
I don't think we are ever prepared enough for the unexpected...
I doubt my
brother and sister-in-law thought they'd face the challenges that they
are dealing with today when they took their baby daughter to get an MRI.
After over a week at the hospital and
visits from more doctors than they can probably count, they finally
came back home on Saturday night but it's likely that my niece Leela has Leigh's
Disease.
A little more information can be found on this site.
And an in-depth explanation is available on Wikipedia.
The truth is... it's not likely that Leela's life will extend beyond the age of 3. Eight years of age if she's lucky. Please keep Jed, Kendra, Leela and their family in your thoughts and prayers, folks.
Hey! For those of you who have been keeping my niece, Leela, in your thoughts and prayers here's an update from my sister-in-law, Kendra, on how Leela is doing and what the doctors have found out: "Okay,
so it's been hard to find time to post any updates but I will try to
give y'all the scoop in a nutshell (but it will be hard). On Friday
Leela went in for an MRI to look for possible reasons for the way her
eyes drift apart, and developmental issues. She has also been having
spells that we have been suspecting were some kind of seizure, though
the doctors at the time felt it was probably acid
reflux. She was given Nitrous Oxide to sedate her for the test, which
should only take 15-20 min. to wake up from. She didn't really even
start to snap out of it for over 24 hours. After staying at the
hospital overnight in Eau Claire, the nest afternoon when she was still
totally limp the doctors decided to ship her to Mayo Rochester via
ambulance. The neurologists there (here) reviewed the MRI and found some
abnormalities in the brain stem consistant with a genetic condition
called Metabolic Syndrome. It is where the body is missing some
building block that is required to break down some nutrient(s) in the
body, so the nutrient(s) build up in the body. They also decided that
her spells (which have increased since this started) are almost
certainly infantile spasms, which are a type of seizure. The other
possibility is that she has some kind of mitochondrial issue, which I'm
more confused about. They said she has Lactic Acidosis, and has for
some time, but has been compensating well for it, and a slight heart
abnormality that isn't causing her any probems right now. She also had
elevated levels of some other acid that I think starts with a P. She's
undergone quite a few tests and seen about 1000 different people. So
far, besides the MRI she's on her 2nd eeg, and she's had an ekg, an
echogram, a few blood tests, urine test, a skin biopsy, a swallow test
and later today they are supposed to do a spinal tap. They had to put
something called a stick line (pretty scary) in her, which they had to
sedate her for again, but they used a different gas this time and she
came out of it just fine. Some of the tests they are doing to find out
if the condition was passed down genetically or if it's a new mutation.
They probably won't know that for about two months. They said that the
problem they think she has would explain the eyes, the seizures, the
developemental issues, the heart abnormality and the trouble coming out
of sedation. BTW, she's finally been acting more herself since last
night. She's still not 100% though. Also, this whole time I've been
very ill. I was almost positive it was influenza but they tested me for
it and it came back negative. So now I'm thinking it's just some
random respiratory infection that has developed into pneumonia. Anyway,
I have to wear a mask a lot and everyone coming in is supposed to wear a
mask, gloves, and gown. They really hope Leela doesn't catch it
because apparently kids with this condition have a hard time dealing
with illness. So, I think that's about it for now. We're still here,
waiting. After all that, we have a lot of info, yet we really don't
know much at all yet. We have no idea when they will send us home. We
would like to thank everyone who has helped us and sent us they're
thoughts and prayers. Sorry we don't post more often or respond to
everyone individually. We never know when another team of doctors is
going to walk in. God Bless everyone!"
In the winter the birds come out on warm days and chirp. It makes you feel good. But you know it's bad when the birds start coming out to chirp when it's below zero and 10 degree weather feels really warm. It's been a cold winter!
Dorothy Hamill
The 2014 Winter Olympics are here. Skating, skiing, snowboarding... I enjoy watching a number of the sports when I get a chance... and of course I cheer for the American teams and athletes. Over all I find it to be awesome and inspiring. To go above and beyond accomplishment.... to not only achieve reaching the end goal, but crossing the finish line in first place... to accept defeat with grace... to push the limit... to get up and keep going even after you fall... to have passion, not because you're good at something or because you can do it, but because you love it.
This is why we watch the Olympics, isn't it? To be moved. To be motivated.
But life is not all about achievement and passion. It is also about laughter. The kind that makes your guts hurt and your tears run. The kind of laughter that every company aims for when making a commercial to be aired during the Super Bowl:
Ah, yes. Life has many pleasures and pains. We prefer the pain that comes from pleasure such as laughter, but sometimes there's a great deal of pleasure that we get from pain. Like Jay Leno's last night on the Tonight Show after a good, long 22 year career. I didn't watch his show that often but it was a good last night. It's a big deal when a comedian cries. I think it's fair to say that everyone wonders if it will really be his last night. A comedian would do that though! Come back just for kicks. Jay was a bit crude, a bit crass sometimes but he went out with class (having Garth Brooks and Billy Crystal on his last show was epic!) and as the years carry on people will look back and remember the good ol' days when Jay Leno was the man who made us forget our worries at the end of the day.
Anyways... dinner is waiting, there are drinks to be drunk and amusement to be had.
Eat, drink and be merry folks.... because it makes the winter shorter.
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