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Julia Rosner


About Julia
To the outside world, it may seem as though Julia has lots of limitations. While that may be true, it is only part of the story. Julia is an amazing young lady who has taught us more about the most important things in life than most people are lucky enough to experience in an entire lifetime. She finds pleasure in the little things - a warm bath, good music, hugs and kisses from her sister, hearing a sweet story, going swimming on a hot summer day. She is also a hard worker and very rarely fusses or complains. She makes us proud!

Seizure Control and Other Medical Stuff
As many of the Aicardi kids, Julia is complicated. Her medical team includes a family doctor, neurologist, ophthalmologist, pulmonologist, spine specialist, GI doctor, endocrine specialist and ENT. We have been fortunate to build a team that seems to truly care about Julia and giving her the best quality of life possible.

Julia has a significant vision impairment – her left eye is micropthalmic (smaller) with a detached retina, meaning there’s virtually no sight in that eye. Her right eye has an optic nerve coloboma (divet), so we’re unsure of her vision potential. Early on, the specialists thought that she would only be able to see light and dark. Now, we do think that she can see more than that, but vision is certainly not the best way for her to learn about the world.

In January of 2005, Julia had a VNS implant. We tried to find a balance between getting it as soon as possible and waiting until the surgeon felt comfortable that she was big enough. She ended up being the smallest kid he has done a VNS for, but the surgery went well. The VNS has not eliminated her seizures, but she it has made her more alert, and we’ve found that tinkering with the settings can help with seizure control. Overall, we are happy that we made the decision to have the VNS done. We've tried many combinations of seizure medications - some that have worked better than others, but none that have given us that magical balance of seizure control without over- sedation. We'll have to keep working on that.

For many years, we tried to avoid a g-tube. Julia loves to eat, and we didn’t want to take that away from her. However, after she got a nasty respiratory virus a few years ago, she stopped eating and was hospitalized. During that hospital stay, Julia got an NG tube (nose to stomach) so that we could keep her nourished and hydrated. She went home with the NG tube, and after much soul searching, we decided that a permanent g-tube was the best solution for her long-term good health. So, after 2 months with the NG tube (UGH), she got her Mic-Key button. All we can say now is why did we wait so long?? For many years after getting her g-tube, Julia was able to eat without issues, and we only used the g-tube for fluids, meds and whenever Julia was not feeling up to eating. However, within the last couple of months, Julia's feeding skills deteriorated (we think due to over-sedation from her seizure meds and the progression of her scoliosis). So, we've had to rely on her g-tube for all of her feedings - at least for a while. She still gets the same foods as she did before - we just use our magic Vitamix to puree them down to a thick liquid (blenderized diet). We're happy that Julia can still be a very healthy eater, no matter how the food gets to her tummy.

The last few months have brought a string of respiratory illnesses, and we’re working with our pulmonologist to get and keep Julia healthier, especially during the long winter months. We’re doing nebulizer treatments (Pulmicort daily and Albuterol as needed), Vest treatments and prophylactic antibiotics.

It is especially important for Julia to be as healthy as possible because she is scheduled for spinal fusion surgery in January. Julia has struggled with scoliosis for eight years, and her curve has progressed significantly. She has an S-shaped curve that is 75 degrees at the bottom and 55 degrees at the top. With such a big curve, it is difficult to position her and we're concerned that the curve is impacting her lungs and her ability to swallow effectively. We want to give her the chance to have the best quality of life possible, and we feel the fusion surgery will do that.

Make-a-Wish
For Julia's 10th birthday, she was granted a vacation to DisneyWorld. Words cannot even begin to describe how special the entire experience was for Julia and our entire family. We got a limo ride to and from the airport, stayed in a villa at a very special resort called "Give Kids the World" (and the name really says it all), got front of the line passes for almost every ride, visited Magic Kingdom, Epcot, Animal Kingdom, SeaWorld, Gatorland...the list goes on and on. But, the real magic of the vacation was the over-the-top kindness and special little touches we were treated to that made Julia's disabilities less overwhelming and less limiting for one magical week. We will be forever grateful for the experiences and memories of that once-in-a-lifetime vacation!

The Rest of the Family
Julia has a big brother, little brother and little sister. Oh my, we do have a full house. But, it is full of love and laughter, so we feel very blessed (and sometimes just a little tired). Big brother Alex is twelve years old and is at that awkward age where he's not quite sure whether or not he wants to acknowledge being related to any of us. Little brother Luke is eight years old and has the amazing ability to just go with the flow. He is a very happy little boy that loves life, sports and x-Box. Little sister Erica is six years old, and she’s our mother hen. She watches out for her big sister and loves to advise us all about Julia's wants and needs. The girls share a bedroom, and they have a very special relationship. Julia loves to be around Erica, and they are both all smiles when they are together.
Matt (Dad) and Michele (Mom) are fortunate to have employers that are extremely flexible, enabling us to take care of family issues and illnesses as needed.

The Arrival
Julia’s arrival into this world is quite a story that we’d like to share. We knew during the pregnancy that there were some complications because fluid was found on Julia’s brain during a routine ultrasound at 20 weeks. We were given the option to terminate the pregnancy, but we were already in love with our little girl. After a long and anxious pregnancy of not knowing what to expect, Julia Michele Rosner made her entrance into this world in dramatic fashion. After months of Michele telling everyone with complete certainty that Julia would be the Rosner family’s second Easter baby (her big brother was born on Easter Sunday 2000), Julia was born at 11:59 pm on March 31, 2002 – Easter Sunday. As late as 11:56 pm, even Mommy thought that Julia would not arrive until April 1st. But, Julia had some ideas of her own – she came very quickly and just in time to be yet another Easter miracle for our family. She had already taught us the first of many lessons that we know she has in store for us – never underestimate her. And, we think it was a message from God as well – a very special treasure that he has trusted us with.

The Journey
Julia was diagnosed with Aicardi Syndrome when she was just two days old, and we’ve come a long way since then. The first days, weeks and months after her diagnosis were so scary. We felt overwhelmed and heartbroken. It seemed as though we had been thrown into a huge pit of despair, and we didn’t know if we would ever be able to get out. Now, more than ten years later, we’ve found the “normal” for us. We’ve learned to deal with daily seizures, and we celebrate Julia’s small successes rather than constantly mourning what she cannot do. We’ve also found many ways to keep our family as typical as possible. We are on the go a lot, and we keep Julia as involved as we possibly can. Daddy found a way to convert Julia’s Kid Kart into a bike trailer, and she loves our family bike rides. We go to the beach, parks, museums, church, Brewer baseball games...Julia even loves to go rollerskating (as long as Mom is not too reckless while pushing). Our family is very much like many other families. After thinking that our happiness had been stolen, we find that now there’s much more joy in our lives than there is sadness. And, our lives are much richer for the experiences and lessons Julia has brought us. We truly feel blessed to have been given such an amazing gift.

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12-08-2012