Last update 2/20/2000 (updates in red)
I can walk with the use of AFKO braces on both legs. I get around great now without hanging onto anything, but every now and then I fall down, especially on uneven terrain like grass and stones. I also have a wheelchair which I use for long distances like when we go to the mall or the zoo. Even though I can walk, my legs get tired if I can't take breaks so I have to rely on my wheelchair when we go away from home.
My brothers really treat me great. Mom and dad make sure I do things for myself and won't let my brothers baby me. I guess that's a good thing even though I don't think so all the time.
Even though my parents were convinced something was still not right as I was constantly falling and getting Urinary Tract Infections, the doctors at Childrens Hospital in Columbus repeatedly said nothing was wrong. On August 30, 1999 our local pediatrician ordered a CT Scan and discovered that the shunt catheter was out of the ventricle! She sent us to Columbus Childrens Hospital for what she thought would be a revision. The doctors there decided to observe for a couple days and ultimately decided that since I did not have the "typical" symptoms(i.e. severe headaches and vomiting) of a shunt malfunction that nothing needed to be done.
The surgeon found that the catheter was not in the ventricle and it was barely allowing CF fluid to drain. When he checked the tubing from the pump down, he found that it was not draining properly either. When he attemped to remove it, the tubing came apart. He did a full revision, catheter, valve and tubing.
The change after surgery was simply amazing according to my parents. My temperment and determination to be independant returned. However, I was still having problems walking and falling.
My teachers and Physical Therapists talked to my parents about my continued problems with falling. They were getting worse and I was falling even more often. I had also lost some of the abilities I had mastered with the Physical Therapist. My parents have been concerned over this and the teacher and PT's comments just confirmed there suspisions.
Mom and dad took me to see the neurosurgeon again on January 18, 2000. NOTE: Mom and dad switched my entire care to Cincinnati Childrens Hospital. The surgeon was concerned prior to the shunt revision about me having a tethered cord. He wanted to wait though and see if the shunt revision corrected my mobility problems also. Since it didn't and I was still having trouble walking the decision was made to have untethering surgery. So on Friday, January 21, 2000 I underwent untethering surgery for the second time in my life (surgery number eight).
After surgery the doctor told my parents this was one of the toughest untetherings he had ever done. I was very badly tethered and the doctor had to go about two inches higher up my back from the first untethering surgery. I had to lay flat for three days before I was allowed to even sit upright.
I was released from the hospital on January 25, 2000. I have lost my ability to stand on my own and cannot walk now either. We hope that with aggressive Physical Therapy, in time, I can regain these abilities. I am very sore still and it hurts to move, but I've only been home for one day, so I'm sure I'll get better.
This is about all that has gone on. Nothing much to really report, which is a good thing. I hope you check back often and don't hesitate to email my dad if you have any specific questions. God Bless.
NOW A NOTE FROM MY DAD
Laura definately needed this surgery and it will be the best for her in the long run, but the recovery for this surgery is tougher than any of the others she has had thus far. But once again, we work hard with her, pray for the best, and prepare for the worse.
A special thanks here to the doctors and staff at Childrens Hospital in Cincinnati. Each and every person encountered there from the surgeons to the housekeeping staff make you feel comfortable and that they are willing to do anything to make your stay as pleasant as possible.
I was born on November 11, 1994 with Spina Bifida/mylomeningocele. So far I have had nine surgeries. I had my first surgery when I was 12 hours old to close the opening in my spine. I developed Hydracephalus at 3 weeks of age and had a VP shunt surgically placed at this time. Things went pretty well untill I was two and then I had Uretha Reimplantation Surgery on my bladder to stop my reflux and I had Tethered Cord Release surgery to release my spinal cord from the scar tissue created from my first surgery. Then in November of 97 I got a bladder stone and that had to be surgically removed.
I am the only girl out of six children. Yes, I have five brother, four older and one younger. My mom and dad are Sarah and Douglas. My brothers names and birthdates are: Adam (9/19/87), Kenneth (1/25/90), Steven (5/04/92), Nathaniel (5/21/93), and Brandon (3/23/98).
Around January of 1999 started to develope some problems with my mobility and began falling frequently and dragging my left foot. I was cranky and irritable more often than not and was making it rough for my teacher and parents. Mom and dad took me to see my neurologist and after a CT Scan and an MRI he decided I needed to have a shunt revision and then possibly ACM surgery. On March 31, 1999 I went in for surgery. Instead of doing a full revision the neuro surgeon only changed the pump. This lessened the pressure and for a time my temperment improved but I was still falling alot.
My parents were really discouraged as my temperment was continually getting worse and I was falling all the time. They took me to Cincinnati Childrens Hospital for a second opinion. After reviewing the CT Scans from Columbus and ones they took, it was decided that a shunt revision was warranted and was performed on November 22, 1999. (Surgery number seven)
Well it's been almost a month now since my tethering surgery and we're getting pretty discouraged. I'm not walking on my own and even though I use a walker, I can't move around for long without getting tired. My legs just don't seem to do what I want them to. We are still optamistic that with my Physical Therapy I'll improve. We go back to the doctor on March 13 and they are going to check out my braces and see if they are fitted properly or if I have outgrown them, which may be the case.
Well, it's October 24, 2001 and there have been a few things in my life since my dad last updated this in February 2000. I'm doing really well getting around again. I had new braces made this year and they really have helped. I walk without the use of the walker or cane. I am in First Grade now and am loving it. I also got to join the Girl Scouts. I had surgery on my left ankle to release three tendons in my foot. The surgery went really quick with no complications and I was back in my braces two weeks post op.
10/24/01 - Laura is a very verbal and independant little girl. She is in the first grade and loves it. Even though she does have some physical challenges all indications show her intelligence is above average.
She has the gift of a wonderful memory. She doesn't forget a thing, especially when it comes to her medical care. She is extremely motivated and determined to do everything her brothers do. She may not do it the same way they do, but 99% of the time she finds a way to do it herself. We attribute this to having her brothers around and her determination to keep up with them along with a strong Early Intervention Program.
It took a lot of tough love to get her to do the basic things "normal" children do as they grow. From rolling over, to crawling, standing , etc. Many a time my wife and I had tears because we had to force Laura to do her Physical Therapy and she was screaming and crying. It has paid off.
When Laura was first born all predictions were that she would never crawl or walk and that she would be confined to a wheelchair. She has proven everyone wrong. Granted, not all children with Spina Bifida are this fortunate in their mobility. We were blessed and thank God each day for the abilities she does have. Each case is different even if the opening is in the same area. My point is, do everything possible to help your child. Hope for the best and prepare for the worst.
This last surgery for untethering is taking it's toll on Laura. She is still very determined and works through the pain she is having right now. She already wants to return to school! I guess it is harder on us as parents to see all the progress she made and now to have to learn it over again. Laura doesn't seemed fazed though. When she tried to stand and walk and couldn't this morning, she looked at me and matter of factly stated, "Well, guess I'll have to learn to do that again!" I on the other hand, wanted to break down and cry.
Laura has been a blessing for us as a family. I can not imagine life with out her as a part of our family. Too many doctors yet today recommend abortion when a child is discovered to have Spina Bifida. Such a bleak outlook is given to the parents that a good deal are "scared into" having abortions. Just take a look at Laura and tell me she can't live a productive and joyfull life. Yes, a child with any handicap takes extra work and care than a child who is "healthy", but the joy and love you receive in return is more than worth the extra effort.
If you have any questions or comments, please feel free to e-mail me at: dofsix@woh.rr.com
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