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Email:
stevesgirl250@comcast.net
 5-5-10
I want to start by saying sorry I haven't done this sooner, at one point I
did start to write and let you all know , but it was to hard for me to
finish. Maddy past away on February 16th 2009. she was in and out hospital
for several months battling phenomena. She spent some time in ICU on a vent,
then would bounce back. She always amazed me with her strength. It was
almost like every day she lost more of her spunk, but would always give ya
smiles.
Beginning of February she started taking turns for worse everyday. Me and
her step mother Patty spent alot of time talking to Carol May , and her
assistant at children hospital, they really helped me threw everything.
Maddy's turned twelve on Jan 30th. we had a nice birthday party for her in
Children’s Hospital. All her brothers and sisters were their singing and
caring on for her.
Maddy at that point was just not her happy self, it was very hard to see her
and accept she was no longer able to do the things she did before. Maddy was
discharged from hospital on Friday Feb. 14 (my heart for Valentine’s). She
was on a by pap breathing machine, o2, feeding tube, and monitor. Maddy’s
night nurse had quit before Christmas, so when she was discharged the home
nursing co were still looking for nurses to help me care for her. I had alot
of help and support from my sister Jenny, and her step mother Patty.
The night Maddy passed she didn’t want to sleep, so her and I played,
she was smiling and making noises till almost five thirty am, when she
decided to go to sleep. I went to watch TV and I to fell asleep. I woke to
her monitor at six thirty, at that time Maddy got her angel wings, I feel in
my heart she wanted to be at home with her family before she let that
happen.
Maddy has touched everyone who had contact with her, she was a beautiful,
loving little girl. We always said we lived on love! My life will never be
the same I still think I hear her laugh, or her scratch on her netting of
her bed, I think its her letting me know she ok in heaven with my mother. I
cant believe its been over a year already. She has changed, and touched all
our lives in such good ways, my three boys want to be in the medical field
when the grow up. Jonathan now 15, James 7, and Dylan 3.
My life will never be the same. I will always feel an emptiness but thanks
to my girl Maddy she showed me how to be strong! Maddy is now in heaven
where their she is able to run, sing, and play while watching over me and
my boys. Thanks to everyone on this wonderful site it has helped me find
strength many times.
Always in my thoughts and prayers
With love Patti ~ Miss Madalin’s Mommy
stevesgirl250@comcast.net
4-24-08
Miss Maddy has had a rough year, she spent alot of
time in the hospital. the whole month of Feb.. She had the flu in January
and it just got ugly from their. She was on a ventilator for a little while
( boy was I scared) and was in the icu for awhile. well she now has a
feeding tube, guess she put it off long enough.
From her being sick all year, she lost a lot of weight
and strength. We say she got more strength now lol. she is starting to gain
weight, its a slow process. we had to adjust her feeds a couple times. We
all hope and pray it gets better from here.
with love
Patti
- - -
Miss
Maddy is doing pretty good, she still has having seizures almost daily, but
not as severe. We still have hope that the vns will start to kick in more,
fingers crossed.
Maddy is doing great at school in her walker (bronco) her nurse said if
he tries to encourage her she does less, but if left alone she goes, typical
kid.
Well Maddy is a big sister again, her brother Dylan was born on 2/19/07,
and boy she loves him. Its real cute when Dylan cries, Maddy cracks up. So
at times I take him by her when he is being fussy, and I feel bad he is
crying, but at the same time its cute because she is laughing.
Maddy got sick after the baby was born, she almost had a feeding tube
placed. We had the surgery scheduled, and that day Maddy spiked a temp, so
we had to cancel the surgery. And since that day, she has been eating great.
Maddy drinks only neutrem jr with fiber, she is not allowed anything else
per doctors orders. before the surgery date i could only get her to drink 4
cans a day, now she takes 6 or 7 daily. Its almost like she said ha ha I
didn't want that tube again. So as long as she continues to gain weight the
doctors are leaving it be.
I'm sorry I don't get more involved on here, but with 4 kids and one who
lives on the computer I don't have time, but you all are in my prayers
daily,
Patti and Miss Maddy
- - - -
4-21-06
 Maddy was born on 1-30-1997 in a Pittsburgh Hospital. I had a normal
pregnancy except for having a 2 vessel umbilical cord. The doctors told me
it may cause Spina-bifada. I had numerous tests and all came back good.
Maddy
was diagnosed on the day of her birth with mosaic trisomy 13. All they
told me was to take her home, atke pictures and plan a funeral. (Wish They
Could See Her Now) The first three years was rough. Maddy battled RSV,
UTI'S , Urine reflux, Malrotation Surgery, Pancreatitus, Acid reflux,
Gallstones, Teatherol spine, Cataract Surgery, Ear and Eye Infections.
When Maddy had her Malrotation surgery she also had her gallbladder removed.
Maddy was good for almost two and a half years (no hospital stays, just your
typical child hood colds). Then the seizures started, she has grandmal
seizures along with apna seizures. Maddy has been on several different meds
for them, none of which we noticed any changes.
In November of 2005 Maddy had a VNS implanted (Vegal Nerre Stimulater)
she still has several almost daily, but we have hope. the doctors say it
could take awhile before we notice a change. We are all hoping it helps. We
have the greatest nurse that watches Maddy at night so we can get some
sleep. Also a great nurse that goes to school with Maddy at the
WPSFBC (Western Pennsylvania School For Blind Children). We
Thank them for the LOVE they have for Maddy, We're all a team.
Besides the seizures , Maddy is the most happiest little girl you could
ever see. Her smile brightens up every day!!!
  
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