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.

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.