Hi, my name is Donna and I'm a stay-at-home Mom to a wonderful little
boy whom we adopted at the age of 4 mos. when he came home from the neonatal unit weighing only 5
lbs. He was born at 26 weeks, on Nov. 2nd, 1990. He had a grade 3 bleed in his brain resulting in a shunt being placed in
his head. He is now 13 yrs. old and has cerebral palsy with multiple disabilities, including scoliosis, kyphosis, he's blind,
basically non-verbal except for a few words, and he's in a wheelchair. He's also self-abusive. And he's the happiest child
I've ever known!
He's had 20 surgeries in his short life, some minor and some not so minor. He has had about 9 shunt revisions, hip surgery
which required a body cast for 10.5 weeks, abduction tenotomy with a body cast for 4 weeks. He's had a pyloraplasty to repair
his stomach that wasn't emptying, a Nissen to prevent his projectile vomiting, and a gtube for feedings. There are many others
but I won't go into all of them.
Children with Scoliosis
This is my precious boy in the recovery room after
having his left eye removed last summer, 2001.
On this page, I will give frequent updates of Lance's health conditions
and surgeries. Starting with this summer when he
had to go to the hospital outpatient to have some baby teeth
removed
that showed no sign of becoming loose. He had to be
put to sleep for the procedure which is always a concern.
This
was done on July 2nd and he came through with flying
colors.
Then the next week he was able to attend
Bible School every
night at our church accompanied by his nurse, Twila. I was
happy for him to get some fun
in before his next hospital
experience.
My precious boy has suffered from an incurable eye
disease
called Phthisis bulbi for several years. His right
eye was removed in Feb., 2000, and on July 19, 2001, his
left
eye was also removed. He received his new left eye on August 30, 2001.
This has been a devastating
experience but
one that we have managed to weather and still
continue to be happy. Lance never seems to lose his love
for
life regardless of what he goes through. He gives me
the strength to bounce back with him! :o) I guess that's all
for now in the health category.
Lance has been in school since he was 2 yrs. old and loves every minute
of it! He's having a pretty good year this
year but has had to miss quite a few days because of ear
infections
and strep throat. We've been lucky with not
having any surgeries so far, but may be facing spine surgery in the spring.:o(
Hopefully we can avoid that, but his scoliosis has worsened in a short period of time.
Today is April 5, 2002 and
we are on spring break from school. We've had some good days and been to the mall a couple times which is his very favorite
place to go. But today was not so good. His self-abuse was phenomenal today. Very hard to deal with. I had to shelve the plans
I had to take him bowling. It just wasn't possible to do that. I did manage to get him out for a ride in the van and he loves
to do that. I'm sure that he's missing school or 'cool' as he calls it, since he has mentioned it several times. Only two
more days and he'll be back. He loves it so much!
I'm planning a good day for him tomorrow, maybe bowling and then
to the mall. It remains to be seen if the self-abuse gets in the way of that or not. I pray that it won't!
April 8, 2002...well, we ended up only going to the mall since he said
'mall' every time I mentioned the bowling. I figured that was his way of telling me that he didn't want to go
bowling. He knows what he does and doesn't want
to do so I allow him to make choices whenever he's able to do that. WE
had a lot of problems with the self-abuse all weekend long, even at the mall. But he's back in school today and I'm
sure he's happy about that even though he's still abusing himself!
|
| This is me at 9 mos. old, I weighed 10 lbs. |
Find a School Friend
|
 |
|
Tom Jones, our favorite singer
Tom Jones Yahoo Group
Dancing Bush....very cute!:o)
Smile Quilts for Kids
My beautiful boy one day after receiving his new eye, Sept. 1, 2001.
Lance's Smile Quilt
|
| My beautiful teenager on his 13th birthday :) November 2, 2003 |
Lance's Birthday Album
January 27, 2004 Just a quick update! AFter all the worrying
I did about Lance entering his new middle school, I have to say that I'm VERY HAPPY now!!! He has been in the school
since last August and things couldn't get any better than this. The teacher is great! The aides are great! He
has a very rounded day to keep him busy and he's enjoying every bit of it! I should know from now on not to start worrying
until I know there IS a problem!
|
|
|
|
Exceptional Parent Magazine
Lance & Elmo's Place
Here I am in the neonatal unit of the hospital. I spent the first 4 months of my life there.
|
| With my Uncle Keith on my 2nd birthday, 1992 |
Me with my Aunt Karen when I was 2 yrs. old....she's so
much fun!!
 send to a
friend
|
| My hometown, Dawson Springs, Ky. |
|
| Getting a cat scan at Kosair Children's Hospital |
|
| With Aunt Karen, and Jennifer at Thanksgiving, 2001 |
Here I am playing games with my friends at 'Club Chatter'!
|
| With Aunt Karen, Summer 2004 |
|
| My Dad's retirement party, Nov. 2001 |
An impromptu hug for my Dad at the bowling alley. I love
to bowl!!
|
| Here I am at a mall walk for one of the Backstreet Boys' favorite charity |
Backstreet Boys' Official Website
Read my guestbook:o)
Sign my guestbook:o)
Send me mail!
Make A Child Smile
|
| Lance & Dad doing Christmas lights, 2002 |
Update: June 10, 2002....Well, school is out and we are having a very good summer so far! Lance's self-abuse has minimized
considerably since starting the latest med. It's a taste of heaven for me! We are able to do so many fun things without dealing
with it so much. He's even able to lie in bed at night without beating himself.:o) We are going out for nice walks in the
neighborhood which we both love to do and we're making lots of trips to the local malls, which is his VERY favorite thing
to do. He's also swimming in his new pool and getting ready to start hippotherapy for a few weeks. We're also planning movies
and bowling. So much to do and not enough hours in the day or week! I just pray that things continue to improve with
the self abuse and I can't ask for much more than that.
Well, this is it for now, and I'll add more later.
Donna (lancesmom)
UPDATE! May 6, 2003 Well, it's been a long time, no update, so thought I'd play catch-up! Lance has been doing pretty well
since the last update. He's had a couple ear infections and had to have his ear tubes surgically removed due to granulation
tissue growing around them and the ENT thought they were probably doing him more harm than good at this point. He said he
may have outgrown his need for them anyway, since he's older. He's had tubes since he was 2 yrs. old and these permanent ones
for about 4 yrs. So far, he's doing fine with his ears. I'm still very concerned that his legs are getting more and more
contracted. They are much worse than when he was younger. :O( But he's still very happy and enjoying school very much and
his weekly trips to the mall. Only about 4 or 5 more weeks of school to go and next year he will enter middle school. It
concerns me very much that he has to leave the class and all the children that he has known so well for the past 6 yrs. but
eveyone has to move on eventually, so I guess it's just our turn. We'll be alright, I'm sure. Thanks for listening!
|
|
|
|
|
|
