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Thursday, September 22, 2011

1992 Childhood Symptoms

While at work today switching books and movies out of our parent library, I came across a book titled Childhood Symptoms Every Parents Guide to Childhood Illnesses revised edition. Curious, I thumbed through the book and found spina bifida as one of the topics. I quickly looked at the date the book was published and saw 1992. 1992 wasn't that long I opened the book back to spina bifida and began to read. This is what I found.....

"Spina Bifida- a congenital condition in which the bony casting around the spinal cord does not develop properly, permitting the spinal cord and meninges to be exposed. This serious hereditary developmental abnormality occurs during the embryo's first weeks of life in the womb, when the creation of the protective tube around the forming spinal cord does not close completely. After birth, it can be associated with paralysis, deformities, and hydrocephalus (commonly known as water on the brain).

Spina bifida occulta is a milder form of the condition in which the neural tube around the spinal cord is not completely fused, but there are no problems or symptoms, and it may go undetected for years. It requires no treatment.

However, there are two other, graver types of spina bifida- meningocele, in which the membranes that cover the spinal cord protrude through to the surface of the back, and meningomyelocele, in which both those membranes and parts of the spinal cord and nerve roots are visible. Some spina bifida babies with severe meningocele or meningomyelocele have brief lives counted in mere hours, while those who do survive longer commonly have mental retardation and limited motor and muscle-control skills.

Action- Surgery can aid in relieving many of the possible complications. Parents should seek genetic counseling, for the risk of having another child with the same defect is greater than that in the general population. Amniocentesis can pick up signs of spina bifida. Professional help should also be sought to aid the parents and any siblings in coping with the familywide problems associated with this condition."

Holy cow. It really surprises me that this is the information that they had on spina bifida as late as 1992. And then again it doesn't surprise me. When we were given Lila's diagnosis we were told that her lesion was so large that she would probably never walk and would essentially be a vegetable. Terminating would be "understandable" in our case.It breaks my heart to think of all the children that were never given the chance at life because of a diagnosis. Also it infuriates me that "vegetable" would be used at all to describe these children. AAH! I promptly took the book out of the rotation (other info was outdated as well).
I am thankful that medical technology has improved and reading this today made me realize how blessed that Lila was born in 2010 with all this new information. Hopefully one day soon doctors will have even more information on spina bifida and deliver the diagnosis in a better way.

Wednesday, September 21, 2011

Talking up a storm

Miss. Lila has begun talking up a storm. I have been waiting patiently (or not so patiently) for while for her to pick up on new words. She's been able to say mama for awhile but a couple weeks ago she said dada for the first time. Of course she decided to say it REALLY loud during the silent prayer at church on 9/11 but hey she said it!! Daniel is beyond excited. She is also babbling lots of other sounds. Lila has quite the bag of tricks now. She can wave, sign yes, she knows where her hair and mouth are, and can pucker her lips when you ask for a kiss : ) we're also getting quite the attitude! She loves to throw her arm over her forehead very dramatically and lean backwards when she is mad that i won't give her my glasses. Oh and we play peek-a-boo pretty much ALL day. I am amazed that she picks up on so many things at once. Sometimes I get worry about her developmental delays but I try to remember that she's been through so much in her short little life and will catch up. All of the doctors and therapists we've talked to have assured us that she will catch up but that it will take awhile. It seems like we go long periods without learning anything new and then BAM, she'll learn like five new things that we've been working on within two or three days.
So we're getting close to October and that means......Spina bifida awareness month!!! I was really hoping that we would be able to participate in the Walk 'n' Roll for spina bifida in Kentucky (our closest SB chapter) but it doesn't look like we'll be able to make it this year : ( next year we WILL be there and we WILL raise some money for SB! Team Lila! woo woo! And we will get to see our SB friends!
Also November is Epilepsy awareness month! Lila and a special little boy I work with have epilepsy so please check out and get seizure smart!
My new job is going great! I'm planning a Family Fun night for our preschool families next month and i'm really excited about it. Daniel is doing pretty good. It turns out that his knee is going to be ok and doesn't need surgery (Praise God!).
Well that's it for now. Thanks for following!
Alyssa, Daniel, and Lila