Lis has Chiari. She's had three major brain surgeries so far. They were so innovative she's had medical journal articles written about her and a news special. Parts of her brain were removed due to atrophy and them receding down into her spine causing paralysis and seizures. She also had spinal meningitis and still has hydrocephalus. One brain surgery came only a day after another one. I didn't know how any child could take that. These aren't even the "bad" pics, I decided not to put the gruesome ones on. The vertebrates in her spine were sawed through three different times. She has some gruesome keloid scarring from the top of her head to down in her spine now. We had brilliant surgeons who came up with never before done ideas that saved her. Still, some of the surgeons gave us some pretty harsh expectations. Some even suggested we put her in an institution. One told us to plan her funeral. Despite all the odds...Lissa would not give up and has not only gained her motor functions back, she is extremely bright and whole.
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That's her Dad with her during one of her many recoveries. I know some pretty bad stuff has happened to my family lately..but, I'm so greatful that Eric lived long enough to see that his daughter is NOT a vegetable. That she's happy and smart and can run and jump and be sneaky and think of ways to get in trouble. That she can tell a joke, sing a song, learn everything someone in her age group is supposed to..and more. Oh, and that even after being declared legally blind, she fooled 'em again. She's an amazing kid and I'm so glad we have her. I know her medical problems are not done for good. There's no cure for Chairi, but, this kid kicks butt. I know she'll make it fine. That's why you can't give up on life because of the bad things..if you do, you'll miss the good things. She's one of the good things.
That's her Dad with her during one of her many recoveries. I know some pretty bad stuff has happened to my family lately..but, I'm so greatful that Eric lived long enough to see that his daughter is NOT a vegetable. That she's happy and smart and can run and jump and be sneaky and think of ways to get in trouble. That she can tell a joke, sing a song, learn everything someone in her age group is supposed to..and more. Oh, and that even after being declared legally blind, she fooled 'em again. She's an amazing kid and I'm so glad we have her. I know her medical problems are not done for good. There's no cure for Chairi, but, this kid kicks butt. I know she'll make it fine. That's why you can't give up on life because of the bad things..if you do, you'll miss the good things. She's one of the good things.
27 comments:
Aww, she is so cooot! Thankfully she has such a wonderful person like you looking out for her!
what a brave little girl! she's gonna keep kicking chiari's butt and prove all the dr's all wrong!
Wow dishy I had no idea it was so invasive! She doesnt seem to have any coordination problems or sensory issues either...wow what a trooper!
My son has mild Cerebral Palsy from the Chicken pox I had while pregnant, and his issues are physically obvious in comparison...however my guy has scored above his age group intelligence wise...thank Gawd!
I'm glad to hear it. Give him a hug from me.
DD, she is just a fantastic child. My own child was diagnosed with an inoperable but benign brain tumor at age 15. I can't tell you what a terrible time that was for her and us, just surreal... 13 years have passed and the tumor has not changed. My child did have to have a shunt put in for the hydrocephalus which was causing all the symptoms. but lives a 100% normal life. Graduated from high-school, college, works full time, is in a looong term relationship and is now a parent too. You never should give up hope. By the way, you mentioned that Liss still had hydrocephalus and I am assuming she has an under-the-skin shunt? This condition can be easily handled by the shunt and should not affect her life in any way.
Just has to be checked from time to time.
Can't help but tear up. She's a special little girl with just as special grandma.
I'm so glad you posted this today, it's the perfect life affirming reminder we all need from time to time, that kick in the backside to get up and get on with it.
2:57:00..thanks for posting that. We opted not to do the shunts because of the fact that we are in a rural area so far from a real hospital. We were told the shunts can "stop up" and have other problems that have to be handled quickly. Her hydrocephalus is now under control due to the surgeries, but, we watch her close. If she has a headache or eyes start to "yellow", back she goes. So far, so good.
3:14:00..thank you, you're sweet.Someitmes I have to kick my own backside...I feel like Jim Carey. Heh.
Just a note (I'm so windy today)..we live so far out in the boonies that some smart assed doctor called in social services once to try and take Lissa into foster care JUST because we have no real hospital here. It didn't work and was just mean and awful. We do have medical air lift here. Childrens in Omaha is 80 miles away.
DD, These shunts are so good that my child only has to be seen once every 2 years. When it was first put in place it was one visit after a month, then 3 months then a year etc...Now she is only being seen every 2 years like I said. If Lissy's is being handled by surgery, great! Never heard of the "yellow eye" symptom but was warned lots about swollen, puffy eyes, and even the forhead and area around the eyes can swell, plus of course the cursed headaches.
that doctor needs to be taken into foster care for suggesting that! wtf??? he shouldn't be a doctor with that kind of mentality!
Don't you just love doctors and their predictions? I know it's their job to prepare families for the worst, but no one needs to hear that kind of negativity. As for the one who suggested foster care, he needs his head examined and his license revoked.
Kids are remarkable, though. They can go through hell and then bounce right back. They're strong and brave and so damn full of life.
Lissa is going to be alright. She's a fighter, just like her grandma.
CapriciousCat
Thank you for sharing this. And bet you that MD was married to a social worker.
D.D, (((( Postive* Healing* Vibes & Blessings to you and your Family ))))))
Sincerely, Susan E.
Cupcake, that's how I feel about social workers too! They can be incredibly self-righteous and the med profession often puts life itself before the quality of life/love/family.
Love keeps people healthier, that's backed up by studies, but they don't take it into account when they can push their weight around. Imagine how difficult it would have been for Lissa in foster care.
Those were very hard to look at, and actually made me cry! :(
I had looked up Chiari, when I first saw you mention Lissa suffered from this. I had never heard of it!? I am so glad to see she is doing so well, after such an ordeal! She is so beautiful and lively, and I'm so glad! You and she are so lucky to have one another!
I smiled at all the pictures because I know she is 1 lucky loved child and through all the pictures that radiated out so clearly from her.
I also know she means the world to you and it is comforting to know that Eric knew she was loved, cared for and that she was going to survive through it all and it is wonderful that she has these pictures of him and her to cherish.
Crystal
"That's why you can't give up on life because of the bad things..if you do, you'll miss the good things."
Those are words to live by. So true, especially coming from you.
Lissa is a miracle. Really incredible, and so miracles DO happen!
As for the doc who wanted to foster Lissa out, i had that, because i was a single mother. I was asking what kind of child minding services the local community people were offering and they said i could foster my son out. It really flipped me out. Luckily i had my son when i was 33 and was mature enough not to go there, but i wondered how a vulnerable young woman would take that sort of advice.
precious child. The brain is not removed , the bone around the brain is removed .Just so you say it correctly . good luck
No..last anon. Her case was severe and unique. Her cerebellum developed, but, was pushed partially down into her spine and atropied, due to the non development of the skull. They removed parts of her brain.I was there. And the doctor who pushed for medical foster care was a woman. A woman with children of her own.
What a remarkable, strong, beautiful child. We all love baby Lissa here. Thank you for sharing this with us DD.
What a lovely post. You've inspired a lot of people, because we know you're not just talking through your ass. You've really been through it.
You're a great daughter, a great mom and a great grandmother, and they're all lucky to have you.
N.
LISSA IS BAD ASS! =)
-Boston Jess
Those pics brought back memories of what Lissa went thru.... and its a joy to see how she is today. Pat YOU had a lot to do with Lissa's progress, be proud of yourself my friend...
Nads
She's absolutely adorable! She's also a very special child with amazing strength.
Thank you for sharing her with us DD and all her antics.
Eliza
Hugs to all my friends on here. You are so precious to me.
Those pix brought back memories. My son was born early, had a stroke from the oxygen and required a shunt. He has had 17 surgeries; 12 of them between ages 1 - 2 due to 'stopping up.' We have been fortunate that he's now going on 7 and has only had to have 2 revisions in 5 years. He has a mild cerebral palsy and aspergers in addition to hydrocephalus. But, even with all that, he does so much more than the doctors predicted. I am convinced they give the worst possible outcome. According to them, he was supposed to be a near vegetable as well, if he even lived. Nothing could be farther from the truth. I will have to send you his picture sometime.
how dare you teach me something!
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