Thursday, December 6, 2012

if you are looking for support and help

please contact me on facebook. tricia schizencephalyawareness dennis

or go to Noah's page at https://www.facebook.com/SchizencephalyAwarenessNoahDennis

and don't forget to let us know if you would like to add your childs picture to the non profit for Schizencephaly at www.noahscart.org

Monday, December 3, 2012

Johnny's story with Schizencephaly


the story of Johnny Schiz kid highlight our Buddy of the week

by Tricia SchizencephalyAwareness Dennis on Monday, June 11, 2012 at 1:33pm ·
"I truly enjoy learning about all of these children. we have learned differences and many similarities and each story matters to everyone that is trying to understand schizencephaly.

Thank you all for letting me share all these. they are wonderful" tricia



   I was 18 when I found out I was pregnant. When I was 3months pregnant, I had passed out at work and hit my stomache on a metal table. when the ambulance got there, they said my sugar was 24 (way to low). They got me to the hospital and said the baby was fine I had nothing to worry about.
  2 weeks later, i started cramping really bad, I was rushed to the hospital and was told that i was probably miscarring but they decided to admit me over night. I was released the next day, and was told to go home and rest.. A month later i was rushed back to the hospital and was told that i was trying to deliver early, I was given medication to stop my contractions and sent home
   I went from 4 months to the time i delivered my son going into labor and they always gave me medication to stop him from coming. I was put on bed rest at 7 months. Johnny was due May 19, 1999 and they finally gave me medication to start my labor on June 6, 1999 and he was born 45 mintues later...

During birth I had passed out, and finally the doc got me to wake up and pretty much told me if i didnt push my baby would die. So i pushed. When he was born he was white and had a cone shapped head. The doctors told me that he was absoulatley fine..
 We got to go home within 48 hours of him being born!
  He was such a great baby, he did everything early and was sitting up at 6 months and rolling over.. Never even thought there was anyting wrong with him!
1 day old
11 days old
 Johnny was such a great baby, he did everything early and was sitting up at 6 months and rolling over.. Never even thought there was anyting wrong with him.

 All a sudden he stopped doing anything and could not set up at all by his self. When he was 6 months old he stopped breathing on me and was put on a sleep apnea monitor. Finally at 11 months old they did a MRI. I was notified by phone 2 weeks after the test was done that my son had a rare disorder called schizencephaly..
 I was devasted and felt like I did something wrong even though i knew i did everything I was suppose too. I went and got on the computer tried to find out what this was and what caused it. The doctor told me that Johnny was his first case to diagnose with this in Oklahoma. He was put in therapy at one year old and has continued it since.
  I was told that Johnny's schiz was so bad that he would probably die before his third birthday and be mentally retarded.

From that day on we took it day by day. Johnny started having ear infections at 1 year of age and had to have tubes put in every six months or so. When he was two he had to have surgery on his middle ear where they said he needed to have a pulip removed. When the doctor got in to the ear, he noticed that he had a tumor that was bigger than a softball.

 He decided to not go any further. He came out to the waiting room and I could just feel that there was something wrong!

angel


johnny's favorite therapist
They admitted Johnny to the hospital and scheduled him for surgery that next morning. We were told that this was a dangerous surgery. Family from both sides was there for us during this time and It took 12 hours to do the surgery, then he had to stay in th hospital for 1 month untill he was infection free.. They then had to do a mastoidectomy and also removed all his hearing bones in that ear. Which made him deaf out of that ear.

  Every 6 months he had to have surgery on that ear so they could go in and clean it out.. He has had over 30 surgerys on the ear alone.. At 2 1/2 he had to have surgery on his eye muscles his eyes would wonder up and down. He has not had any problems since with his eyes. He does where glasses for stigmatisms.
   At 3 he had surgery on his right hand to release his tendons.. this surgery made his hand worse. He is paralyzed on his right side, he has had braces and cast on his leg to help release his muscles... At age 5 he started to have some stomache spasms, the doctors could not figure out what was causing this, so they kept sending us home with pain meds . Finally at age 6 I took him to the ER and told them that I was not leaving untill they did something. He was always doubling over and in pain. They finally did a MRI and ultrasound on his stomach.

  It ws then they found a blockage to his right kidney. He had to have emergency surgery. They went in and cut away the blockage and some of his kidney. He finally stopped having as much pain in his stomach.. At age 6 he also was finally started on regular seizure meds Topamax. He was already on ativan and Diastat for emergency use.. They had tried him on several seizures meds buth he could not take them. Topamax did help with the seizures.

  By age 6 he finally got his Baha hearing device placed. I remember the day he finally go his box put on and the doctor told me to cover his good ear and whisper into his bad ear. I whispered I LOVE YOU BABY BOY and he looked at me with a smile and said I LOVE YOU TOO MOMMY

 When I knew Johnny heard me say I love you and His little voice responded back I was in tears.. My baby could finally hear!!!... Then we walked out side and he looked at my mom and said nanny I hear birds and its sounds beautiful.

. At age 11 1/2 He started having some really bad abdominal pain once again. I took him to the ER and was told that he had 5 tumors in his uterer and was taken by ambulance to Maine Medical Childrens Hospital, They imformed me that it was not tumors that it was kidney stones. He had to have a neprostomy bag place in his back to help drain the tube.. We went through about 6 months with these tubes, finally we were sent to a nephrologist and was put on some meds that will help with stones. He was in and out of the hospital every few weeks for about 7 months. We were told that the seizure meds he was on was what was causing his kidney stones. Finally This past January they took him off the seizure meds.

We was told since he was seizure free we no longer need them.




Johnny's story is quite amazing especially with him still dealing even recently with kidney stones. Crytal thank you so much for sharing! After seeing johnny's MRI I truly feel like he is a living angel!!!

Tricia



Johnny's last known seizure was December 2010. He is now 13 and I believe that he is my little miracle boy...

I will tell you all this. when he was 4 he was trying to walk and just couldnt do it alone without falling. My mother in law took his shoes, and pacifier to a church in Florida and had them prayed on She came home and put those shoes on him and with minutes he was walking by his self..
We was told that he would never walk, talk or do anything. He does it all. I believe that he does do everything because of God.. Prayer is everything.. Remember the doctors told us by the way his MRI looked that he would pretty much be a vegetable and would die by three years old. Well we just celebrated 13 years and He is far from a vegetable...

Thanks for reading our story...


Sadie's story. Schizencephaly A journey of a brave sadie Bug


Sadie's Story A journey with Schizencephaly

by Tricia SchizencephalyAwareness Dennis on Monday, November 26, 2012 at 2:19pm ·
The last few years I have met some of the most amazing people through Noah. Some people have become permanantly fixed in my heart. Some parents I feel so close to and love their children just like they are my own. Miss Sadie is one of those children.
Thanks so much for letting me share your journey Mistie. Every story helps us all feel that much more sane. So many of us all so different and then after reading another moms story we somehow feel like we are right there with you.
I feel very close to this story as it is much like Mine. Stay tuned all week for the rest of Sadie Bugs story
Tricia


Sadie's Story Written by mom Mistie

I was 16 a senior in High School when I found out I was pregnant with Sadie. I really didnt know I was pregnant till I was about 3 months along. Just like every teen that finds out they are pregnant, I was scared to tell my parents. So I hide it for another 3 months.
                My first appt. with the doctor to find what I was having and if the baby was healthy, made a dramatic turn. The doctor told me he thought Sadie might have a cist on her brain, but he wanted me to go to UTMB in Galveston to get a second opinion. So thats what we did. We went up there thinking every thing is going to be ok. Gilbert(daddy) and I talked about what the doctors told us already, that if it was a cist it was removeable, or that it actually just may be nothing. They never showed us the ultrasound that they did. So we didnt know exactly what they saw. The day of the appt. at UTMB everything was going great, we had our worries but we didnt let that get the best of us till we knew for sure. Finally the nurse comes in to do the ultrasound and she is upbeat about it and showing us our little girls fingers and toes. Then as the nurse goes on and is showing us our little girls face and taking measurements, she gets quiet. I look over to see the nurse has tears coming down her face. All I could do is just look at her and wonder what is going on, what does she see in that picture that we dont. Then all of a sudden she excuses herself and tells us she will be right back with the doctor. While the nurse is gone I remember talking to my family and letting them know that we have decided on a name for our baby, Sadie Nicole Perez. A few minutes later the the doctor comes in to look at the ultrasound. He thens starts showing us this black area on the screen where Sadie's brain is. He tells us it looks like there is alot of fluid on her brain but he would like to do a MRI to get a better look at her. Of course I start freaking out about the fluid on Sadie's brain and the effects it could have on her.  Then i start in on the fact I had never heard of them doing MRIs on pregnant women. The doctor lets us know its safe to do and we have nothing to worry about. He should of thought those words threw alittle bit better, I had alot to worry about. The appt. was set up for that day and I remember it taking forever because Sadie was doing alot of kicking that day. They kept telling me not to move, I had to tell them it wasnt me it was her, that they needed to tell her that. They finally got what they needed and they let me come in the room to see how it looked with Sadie in my tummy. I have to say that part was neat, of course they didnt show me anything else they had.
                Hours later the doctor finally comes and sees us to tell us the results of what was found. He started off by asking me if I had been in any type of accident since I got pregnant, and i tell him no. Thats when he tells us, your daughter has a rare brain disorder called Schizencephaly.....Life as We knew it Changed forever.

Princess Sadie Bug
After hearing the words " your daughter has Schizencephaly" the Dr explains to us what he was able to find and gives us a internet print out to help explain.  He says the cause of this is really unkown and thats why I was asked if any type of accident has happened that would of harmed the baby, to help pinpoint a reason for this happening. We are all crying at this point when he then tells me, "There is a large chance that Sadie wont make it threw the delivery but it was to late in the pregnancy to abort." We told him no matter if this was discovered earlier, aborting was not a option anyway. Sadie was ours from the time I found out and there was no way I would of let that happen. If my grandmother could raise my uncle who had cerebal palsy all by herself, Gilbert and I could do this and we would no matter what. By the time we got out of there it was already getting late so we stay at a hotel there in Galveston. I remember laying in bed that night crying and holding my belly. I had blamed myself for not getting in to see a doctor sooner, that maybe this happened to Sadie cause I didnt get the care I needed to from the begining. The doctor told me that this wasnt my fault, that even if I would of gotten into a doctor sooner there was nothing I could of done to prevent this. I think of it this way, I got to avoid the doctors trying to push me to abort by saying something like " its for the best".  I told myself by not going I never had to hear those horrible words.
                Over the next few months, we tryed to learn all we could about Schiz. We had limited internet access and there really wasn't much to find except the same info over and over.
I ended up going into early labor at one point (sadie was ready to prove doctors wrong) and the doctors were able to stop it. They wanted Sadie to wait a little longer before makeing her entrance into the world. So we ended having to stay in Galveston in a residents for high risk pregnant women. Lucky enough 2 weeks later I went into labor. Things went really well, not one complication. Sadie came into the world on May 8, 2002, weighing 5lbs. 3oz., with a head full of hair, and lungs as strong as they could be. I got to see her for a breif minute before they rushed her out of the room to make sure everything was ok with her. When I finally got to see her, I knew she was going to be just fine. The doctors didnt give her a chance from the first day we found out, but she proved them wrong and it wouldnt be the last time.


Ready to prove all those Dr's wrong

Sadie's story part 3 ( the beginning of delays)

by Tricia SchizencephalyAwareness Dennis on Wednesday, November 28, 2012 at 12:49pm ·
The next morning after Sadie was born, the nurses came in to get all the information about us for Sadie's birth certifacte and all those important papers. I remember sitting there and the nurse looks at us and ask if we was giving Sadie up for adoption. I know it was probably a mandatory question but I took it personally. First thing I thought was that the nurse thought just because Sadie was going to have special needs that I would give her up. Then, I thought she was thinking becasue I was a young mother that I would want to give her up. I snapped at the nurse not thinking that maybe she was just doing her job. I just felt like she thought I wouldn't want my little girl. Guess that goes to show a mothers natural instinct to protect her child.
I was released 2 days later from the hospital, but Sadie had to still stay. They wanted Sadie to gain a few more ounces before they let her go home. We ended up renting a hotel in Galveston so i could be there morning, noon, and night to feed her. She gained the weight that they wanted her to so they told us she was ready to go home. The day that she was released fell obn Mother's Day. Being able to finally take her home was the best gift I could of recieved.  The trip back home was alittle overwhelming with a newborn that was not comfortable in the carseat.
Over the next few months things went well. We went back to Galveswton for several doctors appointments with different specialist. They did a MRI to confirm that Sadie had Schiz. I remember looking at the images and wondering how on earth could something like this happen. The images were that disturbing to me at the time cause I still didnt quiet understand what Schizencephaly was.
We started to see the developmental delays the doctors had told us to watch for. Sadie wasn't holding her head up, rolling over, grabing for objects. I knew to expect this but it still hurt not to be able to watch me daughter do theses things. Ecspecially since we lived with my sister at the time and she had her daughter who was a year older then Sadie. So you can imagine what I was going threw. I refused to admitt that she would never be able to do these things. The doctors had told me that the side of the brain that Sadie was missing the most of was the side that controled the motor skills. But they also told me that it was possible that the other side of her brain could make up and learn for the side that was missing. I grabbed on to that little bit of information and held on to it.

<3
loving the hair

Sadie's Story (with Schizencephaly) growing up with Seizures and surgeries

by Tricia SchizencephalyAwareness Dennis on Thursday, November 29, 2012 at 9:17am ·
   Sadie was doing great over the next couple of years. We had therapist coming to the house to work with her. We had PT, OT, VI, and Speech therapy.  And then it was decided that Sadie would start Pre-k a year earlier so she could get more use out of the therapy at school with the equipment. This was about the time she started having her first seizures.  The doctors had told us that they could start at anytime and just to watch for them. Well her first coulpe of seizures were the worst. She would arch her back, her eyes would roll back, she would hold her breath, and get so stiff. We rushed her to the hospital hopeing that they could do something. But by the time we would get there the seizure was over and she would do nothing but sleep. So they told us just to contact her doctor tomorrow. This just frustrated me, i wanted them to do something right then and there so the seizures would stop. But i found no help there. So over the next couple of days I got her in to see her local doctor till we could go see her doctors in Galveston.  Sadie's pediatrition had a EEG done on her. But by the time we finally got her a appointment they was unable to get anything from it. We went to Galveston to see her doctors and have them take care of the seizures. They decided to put Sadie on Phenobarbaital.  Well after the first dose, we are heading back to the emergency room with Sadie cover in red. It wasnt like a typical rash, she was just red and it was spreading. Come to find out she had a allergic reaction to the medicine. They were at least able to get ahold of the doctors in Galveston so they could change it. They then put her on Topamax which worked to controll the seizures. But as time went by we had to increase the dosage cause little seizures started to slip threw. Eventually she was also put on Baclofen for her muscle tone. She started to get so tight in her arms and even still we cant get her to stretch them all the way out.
Things were going well for awhile. Sadie was in school and getting all her therapy that was needed through the school. We finally except that Sadie's motor skills woud never develop, and that she would not be able to hold her head up or have any trunk support. But we still tried anything that the doctors suggested in hope that maybe she would still develop the ability to do these things.
But of course just when evrything seems to be going well, something always comes up. Once again we are in Galveston for a check up with her team of doctors, and they are doing the usual measureing and making sure the wheelchair is workinjg out, and that her AFOs arent giving her any trouble. This is when they tell us that Sadie's hip seems to be out of place and that we needed to make a appointment with her orthopedic doctor. Well we made the appointment and he tells us that in order to fix Sadies hip that she would need surgery and as soon as possible.  They performed the surgery in Feburary 2009. After she was out of the operating room and recovery they moved her to a private room. This was the first time I really got to see her whole body. Well not really her whole body cause she was in a cast from her hips down to the knee, with only a big enough opening to be able to place her diaper on, which was not easy. She also had a cast on her ankle, since they was already doing surgery the ortho. doctor decided to go ahead and try to fix Sadie's right ankle which was turning in. So what he did was try to stretch those tendions to see if it would help. But to see my little girl in pain and wrapped in these cast was hard, even though i knew she had to have them so the surgery would stick i didnt like it one bit. Sadie was in the hospital for a week sfter her surgery. Lucky enough we had planned ahead and rented a small beach house for everyone to stay at. Of course I stayed with Sadie at nights and only left to shower and eat.  You can imagine how happy we are were when they said she was ready to go home. Which wasnt the easiest thing being she was in this cast that had her legs were pushed out like a frog. Lets just say it was a long slow trip home with her laying on the back seat and me sitting next to her on very protective guard.
                When we make it home we move her bed and everyhthing she would possibly need into the living room and get her settled in. Well the worst thing happens. We get home and the pharmacy that we had them call in her pain med into is closed. So we had to have them send it to a out of town 24 hour pharmacy that was 45 minutes away. Which it seemed like we would never get there and i knew her medicine that she did have in her system was wearing off. But after we get everything situated things strated to run smoothly. Bathes, diaper changes, and getting at least a shirt on her wasnt the easiest. We just started cuting the backs of the shirts open like the hospital gowns so she wouldnt be moved as much getting it on.

Miss Sadie Chilling
Adorable!!

Sadie's story ..after Ankle surgery and onto Baseball!

by Tricia SchizencephalyAwareness Dennis on Friday, November 30, 2012 at 10:01am ·
 Thanks for sharing Sadie's story with everyone Mistie. She is such an angel and Noah loves looking at her Pictures. 


After Sadie was cut out of both her cast, and the doctors were pleased with how well she was doing. She stayed out of school the rest of that year which there was only 2 months left anyway. But from there she continued to improve. The ankle surgery didn't take like they had hoped it would but that was just one small thing compared to her hips.
                For the past couple of years Sadie has done really well. She went back to school the next year and continues her therapy there. She no longer recieves VI or Speech therapy cause since there has been no signs of change in these areas we all agreed that they would discontinue for the the time being. Sadie has also been enjoying Challener Baseball which is a League set up for all special needs children in the area. She loves being outside and around others so this has been great.
                Currently, we are in the process of getting Sadie a back brace due to her scoliosis. Over the years we have seen it slowly curve and the doctors weren't to worried about it at the time since she was in no pain and it wasn't effecting her in any way. I have always thought something needed to be done but every time I asked them about getting a brace for her in the past they told me it wasn't necessary. Well with Sadie's back looking worse, I started to worry more. So i finally got the courage to let the doctors know that I thought it would help her more if she had one. I wouldn't of been able to do this with out all the outstanding support of the other Schiz moms. With all the encouragement i recieved from them and there opinions on the subject, I found my voice on the matter with the doctor.
 Last Year Sadie participated in The first Schizencephaly Day of awareness and so many people came to support her. Her journey is one that touches so many when she meets them and I feel blessed I was chosen to be Her mom.
                Things can get hard at times without haveing all the answers about Schiz that we would like but I wouldnt change a thing. Sadie is perfect the way she is. She has taught me so much about life that I didn't know. Its amazing how far she has come and I know as days go by she will go even further.


Sadie Makes the news!
raising awareness all over

Jennifer Toby A story of Schizencephaly


Jennifer's story is very close to my family and her picture sits in the hallway with all of our other families Pictures. Jennifer and Noah have a very special bond One that cannot be spoken with words just love., And I am so honored to share her story with all. Some children are angels sent from Heaven. That is the way I feel about all the children I know with Schizencephaly. But jennifer's ....well her story is still so alive in our hearts. Janet is a very strong mother and someone I am proud to call family. I hope everyone takes time to really listen with your heart. I have decided to run this story as one part because it just cannot be cut into five days. I will however be sharing pictures of Jennifer throughout the entire week. As a reminder  of many of us that forget that there is so much to Christmas we forget. The smiles and laughs of those that are missed.  This Christmas we should all think of families like Janet's because too many of us forget that so Many of us are missing loed ones during this time of the year.

Tricia


Written by Janet Toby 

 When I was 22 I found out I was going to have another child A Blessing to my little family.
  At 26 weeks Gestation Me and Jay found out it was a GIRL, We were ecstatic! We also found there may be issues. She was in a breech position with feet touching her head, the good news was the ultrasound was read and the we were told even with breech everything looked great and we were having a Healthy baby girl,
 Although we expected some complications due to the baby’s positioning we felt confident since the Dr caught it early that it would go smoothly once the delivering hospital got her into the right position.
 On May 10, 2003 our precious baby was born and we named her Jennifer Michele and what a beautiful girl she was. We thought the worst had past until we were met by some doctors with what words that seemed to make time stop for just a brief moment. Our baby, our special angel could not hold down any fluids and needed to be rushed to the University of Tennessee NICU. It was there we were told Jennifer Had club feet which (we were told) was due to the breech position But we were assured her feet would straighten out.
 The same day she was born it seemed was the same day life changed for my family in an instant. This is the day It seemed the longer we waited for answers the more things began to get worse for Jen’s prognosis.. After the staff ordered x-rays on Jennifer’s we quickly learned Jennifer’s tummy was turned and she would need to be fed by a NJtube. We were still in the Hospital when the Dr ordered yet another test. Jenn was 2 days old when a CT scan was ordered for her head to see how much damage was caused by a lack of Oxygen
  That was the day we Found out we had a miracle because the brain showed 2 parts were missing. Jennifer had BiLateral Open Lip Schizencephaly, Arthrogryposis, Cerebral Palsy, Chronic Lung Disease, Epilepsy, Asthma, Trachia Malatia, and Scoliosis. We didn’t know why this had happened but we soon realized This was the beginning of Our Jennifer’s story and one that would teach my family how life is an ever changing ride. And we got our seatbelts on for a long road.

 The day Jennifer turned 1 month old Jennifer went through a G-Tube placement with the turning of her tummy and a Nissian Fundoplycation.At that time we were told Jennifer wouldn’t live 6 months and be a complete vegetable. We decided that home was the best place and we would fill her heart with all the love possible if she were to only be here a short while.
  We brought Jennifer home 8 weeks after being placed in the NICU. We started corrective casting for the club feet and splints on her hands. It seemed Jen was just as much a fighter as us in this family because by the time Jennifer hit the 6 month mark we celebrated because not only was she living but she was holding her head up some!  She still couldn’t focus well but we went to church and Had a visiting pastor the Pastor came to our pew picked Jennifer up and carried her up and down the aisle praying over her, when the pastor brought her back to the pew her eyes were focusing and not bouncing. GOD is Good!!!
 Jennifer had 30+ surgeries in her life but always smiled She was just so very happy to see the world, to be loved and to share that love with everyone she met. But there were the bad days too.  Jennifer spent her first 2 Birthdays, Christmas, & Thanksgiving in the hospital due to illness and surgeries, but boy when her 3rd birthday came around she had a sweet 3rd birthday party because she was actually spending her special day at home.
 Jennifer started school at age 3 in August she absolutely loved it. Her therapists and teachers had never had a child with so many disabilities or needed to be GTube fed And the friends she made and teachers that were touched By her proved she was a living angel.
 By the Time Jennifer went to school she could sit up on her own & say momma. She Shocked the heck out of her doctors to the point they used Jennifer as a poster child. She was moving mountains even though she never walked! We received TEIS (Tennessee Early Intervention Services) and TIPS (Tennessee Infant Parent Services) these were great at helping us with so many Referrals and transitions. Jennifer took OT, PT and Speech therapy which helped her a great deal but she still couldn’t eat by mouth but Speech helped us with learning how to brush her teeth with her having Arthrogryposis she had limited Jaw and joint movement.
 It seemed Jennifer had a mission in this life even I as her mom never understood but she was so very determined and I couldn’t be more proud! When Jennifer hit Kindergarten at age 5 she was sitting, rolling from back to side, pointing out colors, and working on signing because she had limited words at this time she could say momma, bubby, paw, and no.(seems kids No matter what the normalcy or disability love the word NO!)
 When she hit 6 sJennifer was going even further, She could Sign, pick the right colors to color with, count on her left hand, and make the Letters J, N, T,O she could draw a straight line and circles. When Jennifer hit 7 she was excelling so much the teachers chose her as their helper every day.
There were so many Miracles throughout Jennifer’s life. She was determined to prove every one wrong from day one and I began to realize no one can tell you what to expect from your child. Only God knows what the purpose of each of us in on this earth so in Him I trusted.
  At the age of 7 yrs. 9 months And 3 days Jennifer got the flu. Late at night I went in to check on her and her fever was high so I rushed to call the dr and he assured me she would be fine to take her in that following morning. Later that day it seemed the flu was easing up so I was out while Jay was at home and I got a call from Jay. It is something no mother is ever prepared for. We lost Jen and She was unresponsive. The ambulance got there and got her to the hospital where she was revived but our angel was in a coma and placed on Life Support. I was told She may not make it and she needed to be airlifted to East Tennessee Children’s Hospital.
 On Valentines Day in 2011 a nurse helped her daddy dress her in a Crown and earrings and put her hair up in a ponytail. She lay there quiet while we sat near making sure our princess looked just how she loved to look.The doctor came in and talked to Jay and I and was told the next day they would do some test to determine if Jennifer would come out of her Coma and if not Jay and I had no Choice in the matter of Taking her off of the support. That day seemed to be one of the longest and shortest I have ever been through.
On February 15th,2011 at 4:33 pm by baby passed away. Words simply cannot express how that feels to anyone. To feel helpless, to live past your child. There is a hole that somehow never gets filled even though you learn to laugh again and you learn life goes on. There are many days the pillow becomes your counselor.

I miss her Laughter, her smile, her cuddles, and arguments with her brother and sister. I just miss Jen.
I miss the smells, the routines you get used to. Sometimes a simple breeze carries a memory that brings you back to a good day that I see Jen’s face smiling in the sunlight. So thankful to just be who she was.
 I am Thankful for Tricia for helping me in the group she has been there for me through a lot. I love helping out with finding awareness for Schizencephaly. I know a lot of people would say how can I do it?
     I will tell you how I do it I get up every morning knowing I still have 2 beautiful children that loved Jen just as much as I and a Husband that needs me. And I know Tricia has told me she thinks Jen guides her. Those certain days Noah laughs at nothing Tricia will ask “are you talking to Jennifer again?” and Noah smiles.
 Jennifer is looking down on me She is within all of my thoughts and a part of all the families I meet dealing with Schizencephaly, and I know one day I will get to hold her, Kiss her and never let her go. And every new Schiz child that gets their wings Jennifer is there, Waiting, smiling, Reaching out her hands and welcoming them with all her love. Together they run and play and smile down on us.
 Those days you feel the warm sun briefly when the chilly wind stops for a moment. That is my Jen. Just reminding me through the clouds there is always the light. And Light fills the heart much faster than the dark.

Jennifer meets our Saviour
two days old
beautiful girl
Jen and her brother and sister