Lenzy's Page!
Picture updated
10/31/03
Age 7 years old
04/30/95 birthday
Lenzy's Story---Submitted by: Angie Richards
July of 1995 my husband, Greg and myself decided it was time to try for a baby. It took just one try and I was pregnant. I soon became sick enough to die. I ended up in the hospital from dehydration from morning sickness and diarrhea. Then a month later I started to bleed. I was told to stay off my feet so I did. Up until 7 months I was still sick but not every day. I worked in a hospital so I was able to get ultrasounds when I wanted to. I had at least 7-8 US's. We found out it was a girl and we're so excited they said everything was fine and she was healthy. Well that's when it all began. I went to the doctor for my last appointment and had another ultrasound, they said she was frank breech and would be needed to be taken by c-section (which we knew from previous ultrasounds). He ask "when do you want to have this baby?" I said "when is the next day that you are on?" He said "tomorrow". I said "tomorrow, then". On April 30, 1996 we're all ready, the whole family was there. We got in the delivery room and got ready. They cut me and tried to get the baby out. They couldn't. She was stuck. We thought because she was breech. So, finally after about pulling me off the table they pulled her out and she was a beautiful baby girl full head of black hair, weighing 8lbs 4oz 19in long. When they started cleaning her up, they found a lump on her back and hip. They first thought they had hurt her trying to pull her out. They didn't tell me at first but told my husband and then they came and told us they needed to take her to NICU to make sure she was OK. I started to cry. I didn't even get to hold her. I only saw her for about 20 seconds before they rushed her away. Then it was another 3 hrs after that before I got to hold her. They still didn't know what was wrong so they called in a pediatrician and he said he had never seen anything like it. The next day they were going to call in a Neurosurgeon, but before he could come and talk to us a Neonatologist came in and propped her leg upon my bed and started telling our family that she had Spina Bifida and if she didn't have surgery within 24 hours she would die. Then she proceeded to tell us she would be brain dead, would never walk, or talk, or be able to go to the bathroom by herself and so on. Through the whole thing she acted like we had won the lottery, like it was the most wonderful thing our daughter had SB. We were crushed. That evening the Neurosurgeon came, Dr. Panos Ignatiadis. We told him what she had said and he became angry. He said she should have never told us any of that, because it wasn't true and she didn't know what she was talking about. We didn't know much about SB. But we soon learned and still are learning. The last day I was in the hospital that Neonatologist came in to tell us that, that day was her last day and then I let her have it!!!! I left nothing untouched. She tried to say we ALL misunderstood her. I said your trying to tell me that 5 people misunderstood you? She said "yes". I Proceeded to tell her she was full of it and my husband told her to leave if she knew what was good for her. Needless to say, she left. That week I was all alone. My baby was in the hospital and all I did was cry. I was so heart broken. What did I do? You know, all the questions you ask yourself. Am I that bad of a person for this to happen to me? I finally realized, I didn't do anything wrong. I did everything right. I guess that's what made me so angry. How come me? I know horrible people who have health children and could careless if they lived or died. Why me? It was just Gods plan. I love her more than anything. To make it really special she came home on Mother's Day!!! Everyone was so exited. In NICU they gave her an infection by cathing her and not taking her dirty diaper off before cathing, that's why she stayed the extra days. They taught us how to cath her before leaving so we cathed very 4 hours until that July. We knew she always had a wet diaper and we told the urologist and he did some tests and told us to quit cathing. Things have gone pretty well. She has had a few infections but that's because she doesn't empty totally. We keep a watch on it all the time. In December of 96 she had Tethered cord surgery and removal of most of the Lypoma (I forgot to say it was skin covered), she spent 7 days in the hospital. She recovered very well and fast. She is doing very well now. I want to add, sometimes you think it feels like the end ........no it's just the beginning.......of a new way of life. It may be different but it doesn't have to be bad. Life has it's ups and downs and sometimes it throws you a curve but you've just got to go on. When I get down I try and think of all the things I have to be grateful for and how lucky I am. That always brings me back to reality and I realize how lucky I really am. I've got a beautiful daughter and a wonderful and supportive husband and wonderful parents who I can always depend on. I wouldn't trade Lenzy for 5 health kids this just makes her more special!!!
UPDATE: 03/2001
I finally did it....I
left a lot out but its updated...I know that I have forgotten something but I
think that this covers most of everything! I want to say thanks so much for all
that you do for all of us special parents. You have the best site on the web for
special kids! I thank god for a special friend like you. Not everyone can be so
luck! Thank you! Read it and tell me what you think!
Here it is:
Since my last story on Lenzy a lot of things have happened. We still see our
Neuro here but we had to seek other medical care else where. Our orthotist
refused to help us with braces...he had them made and they were junk! They
wouldn't stay on. We told him over and over and he refused to do anything about
it. So we went to Shriners Hospital in Lexington, KY. It was the best decision
we ever made. The Dr here refused to see us and do anything for Lenzy after we
came back from Shriners....needless to say the whole clinic got turned in but
most important she got AFO's and twister cables from Shriners and at 2 yrs of
age she started to walk to our surprise. I will say it was the happiest
moment of my life! She has had quite a few surgeries. She had liposuction to
remove some of the excess fat from the tumor....but it has only grown back. She
had to have hip surgery Sept of 99 and was in a body cast for about 6 weeks. It
wasn't nearly as bad as I thought it was going to be! They told us that it would
be about 6 months before she would be able to walk...she would have to relearn
how....but guess what? In 8 wks I looked up and there she was walking around the
living room! Feb 2001 she had to have another surgery to take the plate and pin
out of her hip because she grew too fast....It was such a shock we were not
expecting it because they said that she would probably never have to have it
removed. So at the same time she also had tendon transfer on her foot also. As I
type this she is in a red cast up to her knee. Shriners is a wonderful place.
They gave us a loner wheelchair until we could get her one of her own and it has
been a so wonderful. I don't know what I would do without it! Now we just have
to wait to get the cast off and see how her hip and foot have healed. As for
bladder and bowel we have started cathing her 4 times a day again and it has
worked out well....No infections in over a yr. They also put her on Ditropan to
keep her dry and to keep her from having bladder spasms. As for the bowel we
have be attempting to get her half way potty trained. Sometimes I think that she
can tell when she has to go but we are still not sure if she can actually tell
but she does go on the big girl potty a lot and it thrills her to death to wear
BIG GIRL panties. But she still has accidents but I think a lot of it has to do
with not wanting to quit what she is doing. There is nothing wrong with her mind
in anyway. She is above average in everything. To smart for her own good ...we
haven't been able to spell around her for about 2 and half yrs now!
She is also going to preschool and loving every minute of it. She has a
boyfriend! lol They have really excepted
her and that has thrilled me. I was so worried about school and her making
friends but she is so out going that she hasn't had any problems with that at
all. No one even mentions her braces and that she falls a lot which I know makes
her feel better....but I really don't think she realizes that she is different
than the other 4 yr olds. But what is so hard to believe is that she will be 5
the 30th of April....doesn't seem that long ago that I was hunting for someone
who had info on Spina Bifida....Thank you so much Susete for being there for me.
I don't know what I would have done without you all of these yrs! I love ya! One
more thing I want to say to you mom and dads out there....don't ever let someone
say your child will NEVER do something. They are only Drs... they are not GOD
and they do not know what tomorrow holds for our child! Look at my miracle! I
had a dr tell me that she would never run down to the seven eleven and get a
slurpy....I beg to differ with him and one day I will tell him that he should
never say things like that to parents. I ruined the first yr and half of my life
after she was born and I didn't enjoy her as much because of worry made by that
one statement ....until I got out of my depression and realized....what the He--
does he know?? And what did he know??? Not a daggon thing! Put your faith in a
higher power he works miracles....I know!
Angie Lenzy's mom
e-mail me adcisco@zoominternet.net
The Richards Family
1997
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