Jena Rose Rowland

We grieve everyday for the Jena we lost and Thank God for the Jena we now have.
Jena rose was born perfectly healthy June 13th, 1997. She was beautiful and a blessing to her big brother, Jared and proud parents Lori and Bill. Jena completed our family. We had dreams and could not wait to start making new memories as we watched Jena and Jared grow.
On April 2O, 1998 Our dreams were changed forever, in fact they were taken from us. It was like we got on a plane leaving for a Florida vacation and ended up in a forgotten place and time with no way home.
Jena was 10 months old, Still breast feeding and was in the 100 percentile with her height and weight. The week after receiving her last Hepatitis 'B vaccine, Jena came down with a low grade temperature. I was concerned and Set up a doctors appointment with her pediatrician first thing in the morning, Where I was told Jena had a Viral infection and that it would have to run its Course!
That evening Jena's temperature Started Climbing and reached 102. I gave her Motrin and Called again to the pediatrician, where I was told this was normal with a viral infection. I just didn't feel comfortable as twelve hours had past and Jena just didn't seem herself.. I again called the pediatrician Stating Jena had decrease of appetite, sleeping more then usually and didn't liked to be held or moved. Once again I was blown off by Jena's pediatrician and told to give it another day or two.
On April 22 , 1998- MY baby girl Still had a high temperature of 103. Jena was lethargic and was just not acting like herself. I called back to the pediatrician and Stated Jena Would be seen today either by her doctor or the Emergency Room. I explained that , I just didn't feel comfortable with her being so young and having a high fever and that she just wasn't acting like herself... The doctors Office made the comment that some patents just over react to things...
Nevertheless, 'Bill and I packed her up- dropped Jared off at a friends ...and headed down the road. It was a matter Of minutes- Jena lost all of her color and started to scream a high pitched sound we had never heard before. We ran Jena into the doctors office where she was diagnosed with Meningitis. We were then sent to our local hospital where they took a chest x-ray, and performed a spinal tap, that confirmed ' Streptococcal Pneumonia Meningitis. In a blink of an eye- Jena's tongue fell Out of her mouth and she laid lifeless and barley breathing. We were told she wouldn't survive through the night. After I realized that the hospital forgot to administer Jena's antibiotic's ( They Stated they were Short Staffed- and that these things happen) -I had her transferred to Johns Hopkins Hospital were she was Placed in the 'PICU  ( 'Pediatric Intensive Care unit).
Jena had several strokes, seizures, blood clots and her brain began to swell. They took her immediately to surgery to place a tube in her brain to drain the extra fluid (Ventriculostomy). It was during this surgery Jena slipped into an coma for the next 2 weeks. We were told Jena may never wake up.
Jena did beat the odds and did wake up but she wasn't the same  baby girl, She was now Deaf, Visually impaired, Paralyzed, Brain Damaged with Epilepsy and Major Sensory Dysfunction. After spending 2 1/2 months at Hopkins, Jena was transferred to Kenney Krieger Institute for one month of rehabilitation. That is where we celebrated her first birthday.
When Jena was released from KKI, we were told she was a beautiful little girl but she would Never WALK, TALK or have any Quality of Life. This disease had destroyed and forever changed our Jena and our family. It was hard, Setting up therapist to come in our home and to watch them try to re-teach Jena the basic things in life like sitting, swallowing, and holding a rattle. We Started with Speech, Occupational and Physical Therapy. It was Hard getting Jena to her doctor's appointments for testing 3 days a week. It was hard., helping our son Jared cope with our new life, as we tried to explain what we as parents Could not understand!!! It was hard., seeing the pain in my husbands eyes, and the fear in his heart. It was Hard Knowing my healthy baby girl was now multi- handicapped and mentally retarded ,  and Deaf/ Blind from meningitis. On September 18th, 1998 Jena had surgery to receive a Cochlear Implant (CI).
This is a hearing device that is implanted into her head and Wired to a processor box that is harnessed to her body. Jena responded well to the Cochlear Implant ( CI ) and is now hearing some sounds, But will never hear like you and I. 
Jena in home therapy. Because Jena Is fully mobile with No comprehension of fear , understanding or consequences, as she Is Still nonverbal.
Our life consists of 24 hours a day 7 days a week- Constant care. It Is HARD , knowing we can't go anywhere as a family. It is HARD If Jared has a Ball game- That Bill or I take Jared -The Other cares for Jena. It's HARD Knowing that Jena's central nervous system can't regulate her body temperature So we have to control it by heat Or Ice. It Is Hard telling Jared, "I am sorry you can't have friends over, because it upsets Jena so much." It is HARD that Jared has to pick and choose what parent sees him in his school play. It is HARD that we have to plan everything around Jena's therapy's and medical appointments- ( There Isn't any time left ). It Is HARD seeing people Stare at Jena like a freak. It is HARD Knowing this is our life and we can't change it.  So We pray for the Strength and the guts to do the best we can to get through each day.
Our days are long and our nights are short!!! 'But today 2002- Four years later Jena is now 5 years old. We are proud to share- Jena is walking, eating
and responding to her name 95% of the time. 'Because Of Jena's major sensory dysfunctions- Jena has a hard time leaving her home and is unable to deal with the amount of input visually and auditory in public Places.  At times we feel like trapped animals in our own home. 'But when Jena smiles and laughs -It makes it a little more bearable. I can tell you that everyday is a fight- To research, educate ourselves, fight for Jena's rights and live life as normal as possible.
Jena has proved many wrong as we pray she will continue to show real progress each and every day ((( We can't help but ask WHY???? How could this have happened? ))) We deal with every emotion possible in a given day, and pray we can reach Out to Others who share our Heartache.
Our dream is to find a way to Stop this deadly disease from taking our love ones away!
UPDATE:  November 1, 2007
Jena is now 10 years old and  has grown so much. Jena is still non-verbal, not potty trained but seems to understand more spoken language. “Where is daddy?” “ Do you want to eat?” The past few years have been extremely hard  as far as  finding appropriate education and extra needed help here at home. Jena is BEAUTIFUL and very demanding at times and still requires 24/7 care. Jena attended ( MSB)  Maryland  School For The Blind for three years in a day program and did well. As Jena grew  her needs have changed needing a strict structured schedule with lots of repetition. As parents we tried
to meet all of her needs,  but soon learned Jena needed so much more then we could offer. We started to see regression and knew we could no longer be selfish  keeping Jena with us.. Jena needed more and it was our job to find it for her.. After searching many schools, we found a wonderful school called The Benedictine School on the Eastern Shore of Maryland.( http://www.benschool.org/benedictine.html )  This school has been around for 48 years educating Exceptional Children like Jena.. We could not even  say the word residential school for months…,But when we walked the school for a tour- We knew this is where Jena needed to be…God led us here for a reason.. Oh it was a fight with our school district - But God sent us there  with hope, commitment and peace..  And we  were not giving up on our baby girl when most people look at her as a number or a co-payment.. We won our Due Process And Jena started at
(TBS) The Benedictine School on September 4, 2007.
Jena is with many other children like herself, she has a scheduled that is strict and provides repetition and lots of opportunities that we could not provide for her.. The staff  has been there for years and they love our children as their own..
I can’t say enough about The Benedictine and the dedication they have shared with Jena and our family. It was far from easy to drop Jena off  at her new school… We walked in circles for weeks feeling lost, confused and heart broken.. But when you see Jena interacting with the other children and staff, swimming, learning how to communicate with pictures and Teach/Talks, sitting on the potty with a smile, learning how to self feed,
Enjoying parties with other children… We know we made the right choice.. The hardest part was admitting we needed help, support and  even some sleep. Know as parents you can give everything you have and  some of our children still need more… Also know our children have legal rights..
Don’t be afraid to ask for help!!! Don’t be afraid to stand up for your child,  Our children have the right to a free and  appropriate education ..in all states!!!  
At least until  the age of 21... 
If you are an Earth bound mom and would like to write me, you can do so by clicking on my name below.
 
 

 

Jena's 1st Day at Benedictine School

Jena kissing her aide Ms.Linda

Jena with Big Brother Jared

Jena home for the weekend

 

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