About Julia
Our wonderful little girl is making slow but steady progress, and she continues to show us that she has a big heart and a strong will. Julia is a social butterfly that enjoys being around other people. She is a hard worker and very rarely fusses or complains. She makes us proud!
Our focus over the last few months has been movement and communication. With help from her school team, we’ve been experimenting with different types of switches. We’d like to give Julia the chance to make choices. However, Julia is so easy-going, we’ve had a hard time finding something she doesn’t like – with no ‘fail’ item, it’s hard to determine if she’s making a conscious choice or just hitting switches at random. Her school team has also found some tricks to get her to hold an object, which has made it possible for her to do some new things including some nearly independent art work. And, she is so proud of her accomplishments. She just glows when she receives compliments!
Julia’s favorite things to do are playing with her brothers and sister, listening to music, eating, being outside on warm days, getting massages and going to school.
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 and spine specialist. We have been fortunate to build a team that seems to truly care about Julia and giving her the best quality of life possible.
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. Her current seizure medications are valproic acid (2.5 ml 3x daily), clonazepam (.5 mg 3x daily) and Zonegran (50 mg am and 75 mg pm). We’re not thrilled to have her on three different seizure meds, but we’ve seen better seizure control than we’ve had in a long time, so we’re sticking with it for now. Reflux has also been an issue for Julia. For that, she takes 10mg of Zegerid twice a day, which has helped.
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 couple of 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?? Julia still loves to eat as much as ever, and she gets eats pureed food for nearly all of her meals. We use the g-tube for fluids, meds and whenever Julia’s not feeling up to eating. The very thing we agonized about getting has relieved a lot of stress for us – we know that Julia can get the fluids, meds and nutrition she needs, even when she’s too sick to eat. And, we no longer spend hours trying to get Julia to drink. It has been a blessing in disguise.
The last few months have brought a string of respiratory illnesses, so we’re working with a pulmonologist to get and keep Julia healthier, especially during the long winter months. We’re doing nebulizer treatments (Pulmicort daily and Albuterol as needed).
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.
Julia also has scoliosis (curved spine) and kyphosis (hunched back). She wears a TLSO (soft back brace) about 20 hours each day in an attempt to slow the curving, which seems to be helping. Fortunately, Julia is extremely tolerant of the brace -- mommy and daddy had a much harder time adjusting to the brace than she did. Unfortunately, her doctor thinks that even with the bracing, she will face some type of surgery or multiple surgeries in the future, but we’re hoping to postpone that as long as possible.
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 eight years old. He is old enough to understand Julia’s limitations, but he shows a lot of patience with his sister. He is just so creative and soft-hearted, and he adds a lot of joy to our family. Little brother Luke is four years old. He is a very happy little boy that loves life and finds so much mischief. He adores his big brother, but the two of them certainly define sibling rivalry and seem to fight as often as they get along. Little sister Erica is two years old, and she’s our mother hen. She watches out for Julia and loves to ‘help’ with Julia’s meds. 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 work “tag team” shifts. Michele does marketing for a computer software company and works two mornings a week. Matt is a machine design/automation engineer and works a crazy schedule that allows him to take care of the kids when Mommy is at work, be home as many evenings as possible and still work a full-time schedule.
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 her parents 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 six 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.
12-07-2008
