(This page is from Sarah's old site Sarahangelgirl.com. Here is the history part of her site.)
Sarah's History
Sarah Ann Zicafoose was born June 10th.2003. Her twin sister Hannah was born just 5 minutes before her. The girls were born 4 weeks early. Sarah weighed 3 pounds 4 ounces and Hannah 3 pounds 14 ounces. It was such a joyous day in our lives. They were the most beautiful babies I had ever seen. Because they were born 5 weeks early the girls had to stay in the NICU for 2 weeks. Darin and I went home 4 days later. It was such a sad day when we could not take them home with us Darin and I were there everyday. So were many members of our family that came to visit them every day as well.
Right at the very beginning we all noticed that there was something a bit different with Sarah. We could not put our finger on it. We just thought because the girls were preemies, that maybe she just needed more time to grow and develop. As time went by we noticed distinctive differences between the girls. Sarah was smaller, weaker and quite a bit more fragile than Hannah. At 2 months old Sarah started having Reflux and was throwing up at least 4 to 5 times a day. We took her to the pediatrician and he gave her Reglan to help her with the reflux. One of the side effects was said to be seizures, which she started having we thought after taking the medicine. We called her doctor over and over. Visited him several times and basically he started writing us off as being extremely over paranoid parents. He did recommend a GI specialist and she was the first to point out to us that she saw something different with Sarah.
Since the pediatrician was being literally a jerk, we did not want to mess around with this so thanks to a co-worker, he recommended a great doctor and we immediately took her to see him. Once we told girl's new doctor of her having these seizures, he wanted us to keep him closely informed.
In October of 2003, they were 4 months old, Sarah's seizures were increasing every day and lasting longer and they were getting stronger. Then on Saturday October 11th. 2003, the same day we took or first family Christmas pictures, that afternoon Sarah started having very, very severe seizures, lasting at least 15 minutes at a time. Darin quickly videotaped them. We then called her doctor and he immediately said to take her to the emergency room.
The ER doctor there saw the videotape and actually witnessed a seizure. He immediately put a name to this and called it "Infantile Spasms" which is a rare form of Epilepsy. We were just heartbroken, devastated and just scared to death. She stayed at the hospital for 3 weeks. Her first Halloween was in the hospital. They ran ever test imaginable and tried so many different kinds of drugs. Nothing was working.... nothing was taking the seizures away.
One of the tests was an EEG. There it showed hypsarrhythmia. (abnormal, chaotic brain wave patterns) Her neurologist wanted us to take her to UCLA to see the pediatric neurological specialist there for an evaluation.
The week of Christmas Darin and his mom took Sarah to UCLA to meet with the pediatric neurology doctors there. Since I was the one that carried the insurance, I still needed to work. Sadly I was unable to go. One of the many doctors they met with was Dr. Mathern, Dr. Sankar and Dr. Shields. There they ran all kinds of test, overnight EEG, MRI and a number of other tests.
They came home Christmas eve. At least we had our first Christmas together.
Then in January, we got the call that they wanted to meet with us and asked us to come out as soon as we could. We met at the UCLA hospital, took us to his office and sat us down. This is when we heard the news that changed our lives and the life of our daughter forever.
Dr. Mathern, the pediatric neurological surgeon at UCLA, told us that in order to get rid of the seizures, she would need a hemispherectomy. (Her surgery is where surgeons removed some portions of the brain and then they completely disconnected the left from the right. That way, the seizures cannot cross over to the good side which is the left side.)
Explained by the doctor, this would be her best shot in having as normal of a life as possible. With out the operation, the seizures would increase her chances of dying by 1% every year. So at age 10, her chances would be 10% of dying. At age 20 her chances increase to 20% and so on.
As shocked and scared as we were, we had no choice but to put our trust in these doctors and in GOD and give her the chance she so deserved. So, on February 17th. 2004 our little angel went in to surgery that lasted 14 hours. We had literally our entire family by our side. Thank GOD for all the support we had.
The stress was so overwhelming that I came down with what I thought was a horrible cold which turned into bronchitis and a touch of pneumonia. Since we were out of town we had a hotel and I was able to get the hotel doctor to see me and prescribed me some very strong antibiotics. I was not allowed to see her for 3 after the surgery. Needless to say I was extremely devastated. But I had to play it safe.
Her Daddy was there for at least 18 hours a day on those 3 days and so was the family.
Once I was able to see her so many emotions swam with in me. All I wanted to hold her and comfort her sooo bad. I wanted to cry for her. She was soo tiny, soo fragile and recovering. All we could do is be by her side and hold her hand. Even with all the bandages and wires going everywhere... she still was soo beautiful and sweet.
Darin and I and our family stayed with her around the clock. The only time we left was at night to try to get some rest. We only slepted maybe 3 to 4 hours each night. Then 10 days later she needed to have a shunt, which was another surgery. Her head was continuing to swell because of fluid build up. Finally she was discharged the first week of March and we all headed back to Arizona. We were there an entire month.
Darin stayed home with the girls while I continued to work. It was so INCREDIBLE rough not only having the twin girls itself, but taking care of Sarah and her recovery and the unknown of her progress and her development.
As we watched Hannah grow and flourish, Sarah was still so tiny, fragile, and she just had to of been in constant pain with the NG tube that we were sent home with. She rarely ever slepted, we barely slepted. Between being physically exhausted, we were emotionally and mentally drained beyond anything I had ever, ever known.
Sarah was finally, finally, finally taken off the NG tube in September of 2004, 7 months after her surgery and they gave her a feeding button in her stomach. We hoped that would eventually help her to start to take liquids and solids orally. Still nothing.
My work kindly let me go in July. It really was a favor and they were incredible kind and sensitive about it. They were closing my position anyways in the Tempe office and moving it to Phoenix. They knew I would not be able to handle the longer drive and longer days. My employers were so great to me and my family, even paying me a month’s salary while I was gone to UCLA and even paid insurance for me till December of that year. That was one less thing to be stresses out about.
Darin was offered a job land surveying in September of 2004 and is still employed.Since Sarah was set up with the state during her first stay at the local hospital for services, she started having Physical Therapy, Occupational Therapy, Speech, Music Therapy and Developmental Therapy that would come to the house twice a week. We even had a respite person come 15 hours a week, about 3-4 hours a day.
To have some one there was very helpful. But the exhaustion was never ending. I was constantly exhausted, overwhelmed, in a time warp, in survival mode, I could not afford to shut down and cry.
That is how I looked at it. Absolute 10000000% survival mode. There was no room, not time, to cry what so ever. Everyone around me was either wrapped up helping us, or with there lives. I felt so incredible alone and just totally shut down like a robot. I had to to keep our lives alive.
We finally decided to move to a single story home to give us more room in August of 2005. The week we moved in and were settled. The girls just turned 2. Sarah started scooting on her bootie around the house and we were ever so happy. That was her only way to get around. Even with all the therapies, she still was not taking anything by mouth. Her sensory levels were still so high. She hated lotion, she hated brushing, massages, anything touching her. But we kept plugging along. She did love stroller rides, swinging, swiming at times, bouncing on the ball, and swinging in a blanket. Therapies continued to come except for speech. We even tried a feeding clinic in Tucson and still nothing.
Because we moved, we lost our speech therapist and it took well over a year to get another therapist. As time went on she was getting bigger and tolerating more things. But during this whole time we dealt with her constant issues of constipation and trapped gas. That in itself has caused a tremendous amount of pain and anxiety for her. We have to maintain this with constant enemas and suppositories. Still seeing the GI for tests and trying different formulas. Nothing seemed to work long term. She was almost 5 and was still at 30 pounds.
When Sarah was 2, she started preschool, for special needs kids. It was so hard to see her go away from the house. It took me 3 months before I would let her ride the bus. Once she started school, about 4 months later, we started to notice a difference. She slowly came out of her shell, just a tad, but enough to start seeing a light in her. Sarah still had many, many, many trips to the doctors and hospitals, but she was slowly progressing in the mists of it all.
In July of 2007, a habilitation center opened up called L.I.F.E (Laurens Institute for Education) where she received one on one habilitation and it is here where she began to walk independently, with out her walker. This was a blessing and a added benefit to school. They really work hard with her and do not put up with her attitude. Her sensory level has gone down tremendously and there is now a true person we see. We were seeing "Sarah Zicafoose" not just "Sarah with disabilities"
Sarah has learned a few signs and is walking more than ever. She is also attending Hippo Therapy , where she rides a horse and is being taught speech. She is doing so great with that as well. When I started this website she was almost 5. Sarah’s progress has been amazing, but still has so far to go. She still is not eating by mouth at all and that is the number one thing that we need to conquer for her and she needs to conquer for her self. She had recently diagnosed with the following Cerebral Palsy and Autism and Neurofibromatosis. This is something we all should of known early on, we were never ever told these additional diagnoses, but now that is neither here nor there. As long as Sarah continues to get the services she needs to thrive, that is all that is all that matters.
She is walking a lot, signing a bit more and talking, when she chooses. She only will say a few things sporadically and at random. She says and does more when at school and at L.I.F.E. At home she knows she does not “have to”. She is a smart, smart girl. She is a beautiful girl and with all hard work, the sleepless nights, the constant visits to the doctors, the meeting, advocating, she is all worth it and more.
Sarah started a new chapter in her live in August 2008. She started Kindergarten. This is where I hoped she will really flourish. She was able to continue to go to L.I.F.E as well. She really loves it there and the providers love her too. (Below is from 2008)
Currenly, Sarah is still having seizues. They vary from none a day up to 5 or more a day. She tends to have the more at school. They are increasingly getting worse. Her left side seems to be the most effected. He neurologist, Dr. Kevin Chapman, has spoke to us about putting her on the Ketogentic diet, which was supposed to of been done in January 2008 but because of her never ending GI issues, Sarah was in the hospital on Christmas day for 3 days due to an insane amout of trapped air. She was put on a different formula, a totally predigested kind and still she is having many, many issues.
Our next thing to conquer is to find her an intensive feeding clinic. We have to get her off her feeding button. We are in the process of looking outside of the state to do so. The insurance may pay for a part, and may not, depending on where we take her. She needs an intensive one on one all day 5 days a week therapy program. The costs for programs vary, but can be extremely expensive.
Darin and I feel once she eats, she will talk, once she talks, she will just take off. And once she eats by mouth, her life will be a bit better and have some kind of "normalcy". She may not have much GI issues like she has. Whether she realizes or not, she will be and feel much more happy.We are investigating all of the feeding therapy clinics across the country, trying to find the one that best fits. Hopefully we can find one soon and take her during the summer.
Currently: This is where we are at right now. We will soon start having fund raisers to help us pay for the feeding therapy. Please visit thru Sarah’s site for pictures and journals and please feel free to leave a comment or message in the Guest Book.
