Coming Soon-Our 2nd Hydrocephalus Walk!

Hello friends and family! We are all really looking forward to participating in the Walk this year on September 7th and raising funds for the research towards better treatments for hydrocephalus. This is our 2nd year participating in the walk and we are hoping to raise even more money for the cause! In case you aren't aware, here is a bit of Cara's story:


Cara was diagnosed with hydrocephalus in August of 2007. She had her VP shunt placed that same month, just one month after her 1st birthday, on August 17, 2007. Since then, we have been very fortunate in that Cara has not had any shunt related issues at all. She is soon to celebrate her 2nd anniversary with this shunt! Cara is doing wonderfully, thanks to the help of some talented therapists, and has started preschool on an IEP. She will be receiving PT, OT, Speech, vision and adaptive learning assistance in the classroom. She has had a great couple of days so far and we are hoping that the positive peer pressure and socialization will be just want Cara needs to continue to make progress.

With your help, we would like to raise awareness and funds for Hydrocephalus. One out of every 1,000 babies born in the United States will have hydrocephalus, yet, it is one of the most under-funded conditions out there. Funds are needed to advance research and explore new treatment options. So, please, won't you pledge your support not only of our family & Cara but for the Hydrocephalus Association? Whatever you can give would be so wonderful! You can donate by clicking here and pledging your support through a secure website. All of your donations are tax deductible!

Thanks again for thinking of us! Many blessings to you & yours!

Laura, Ben, Caitlin & Cara

Won't you please?

Dear Blog Readers,

Won't you please support our family in the Hydrocephalus Walk taking place in Highlands Ranch (suburb of Denver) on September 7th? Our entire family will be walking (well, Cara will be riding, in her stroller) the 2K event. We are really looking forward to the opportunity to help raise awareness and funds for the Hydrocephalus Association, which has been instrumental in helping me find other hydro families as well as providing information and resources during a time when we felt very alone. We would love it if you would consider reaching out and helping us in our fund raising efforts by pledging. Any amount, from $5 to $500 (I can dream) is very much appreciated and 100% tax deductible!

Please, click here to view our pledge page, read a little more about Cara's journey, and consider making a pledge. We'd really appreciate it!

With much love & thanks,

Laura, Ben & the girls.

**Everyone, if you've already received an email from me, please do not be offended. I am just trying to reach out to everyone and get as much support as possible**

Neurology Clinc Results

Cara had her evaluation with the Neurology Clinic at Children's Hospital this morning.
We were referred by her physical therapist who was concerned that Cara was showing signs of both hemiplegia and hypotonic cerebral palsy.

After meeting with Mary Anne (one of the nurses) and then Dr. Reilly, a firm diagnosis was given to us. She does indeed have hypontic cerebral palsy coupled with developmental and intellectual delays.

While none of this came as a great shock to us, it was still a blow to realize that our hope for Cara to catch up and be a "normal" child were just not going to happen. Dr. Reilly explained that he thought that Cara would always be a bit slow, especially intellectually, for the rest of her life. Bottom line, we oficialy have a child with special needs. She will, most likely, always needs assistive services throughout her life and especially when she is of school age. There was talk of a IEP or Individualized Education Plan to ensure that Cara gets the help that she needs. School is still, at minimum, a year away yet, and a lot can happen in that time. We will just have to wait and see how well she does over the next year and go from there. Cara will, most likely, be a candidate for HeadStart when she's three which is wonderful as I know she will benefit from the social as well as educational aspects of the program.

Dr. Reilly also made us aware of a program through the Colorado Department of Education called PEP (Parents Encouraging Parents). It is a support program for parents of children with disabilities. Apparently, they have conferences every few months around the state to share resources, new information and allow parents to meet and talk with others like them and with professionals. Unfortunately, we cannot attend the next conference, but they seem to have them often, so hopefully, we will be able to go in the next few months. I would love to network with more parents who have children with cerebral palsy and hydrocephalus!

I am to go and speak with the financial counselors with the hospital next week to start the application process for getting Cara onto SSI Medicaid to help with her on-going medical expenses. We have to fill out a lengthly application and then also go through an interview with the Social Security office to determine our eligibility. We are keeping our fingers and toes crossed as this would be a blessing for Cara. She would be able to get the best care and whatever kind of services she needs without there being any financial constraints or concerns. If she were to get SSI, we would probably do all of her therapy through Children's Hospital as we believe the clinical setting has proved to be more beneficial for Cara over the in-home setting. The girl is just too comfortable in her own living room and doesn't want to buckle down and work like she does when she goes to the clinic!

Ben & I have taken the news in stride. We were hoping that with hard work and therapy, that Cara would catch up and be a normal child on the developmental and cognitive fronts. Of course, Cara could still amaze us and overcome her challenges but we feel that we have to accept her for who she is and who she will become. We still except great things from our little girl and know that she will be the best Cara that she can be. She has a great network of loving and caring people to make sure that she reaches her every potential and for that, we are SO grateful! We thank you all for sharing in Cara's journey so far--offering prayers, support, a shoulder to cry on, etc. We can't imagine going through this alone!

Two for One

The ball is rolling on Cara's hydrocephalus. Her pediatrician got the MRI results yesterday and promptly called me explain them in layman's terms. He wanted us to move quickly on getting Cara in to see a pediatric neurosurgeon at Children's Hospital. After running to the pediatrician's office to pick up a copy of the MRI results and the name of a neurosurgeon, I was on the phone attempting to book an appointment. My mom ended up having to act as an intermediary since I was having trouble hearing and understanding the appointment scheduler. At first, it looked like we weren't going to be able to get in for a consultation until September, then it moved up to the end of August. Cara's pediatrician felt that there was some urgency to her case, so he called the pediatric neurosurgery department, pleading Cara's case and got us in this Friday (8/10). She is going to see the neurosurgeon recommended by her pediatrician even though I got another referral from my mom (long story) for another who is supposed to be the best in the state...so we may end up changing doctors if we're not impressed. She is also going to see a plastic surgeon at the same time. I'm not entirely certain why a plastic surgeon is necessary but, I'm guessing that it's due to the scars that will result from the surgery. Two surgeons in one visit...way to simplify things, I suppose. Right now, it is of dire importance that we get a surgical consult done ASAP. I am prepared for the fact that we might be prepping Cara for surgery as early as this weekend or the first part of next week depending on the neuro's take on the MRI results and the degree of urgency he attaches to her case. It could be next month too, no way to know right now. From everything that I've read, it looks like there will be a 2-3 day hospital stay after the surgery, assuming that she has a shunt put in. If they do another procedure, I have no clue as to how long as there wasn't much information available on alternative surgeries. I would really like for her to have a endoscopic third ventriculostomy because it is less evasive and sounds like permanent fix to the problem whereas shunts can malfunction and get infected...so it's a life long thing. Right now, we are playing "wait and see" until 2 o'clock on Friday. Then, we should have a lot of answers to our questions.

Again, please keep our family in your thoughts and prayers. We are all a little scared of what is yet to come. I take comfort in the knowledge that my family and friends are there for me. My mom will be making the 5 hour journey across the state to be here for the consultation. We need all the support (and medical know-how) that we can get.

Thanks everyone for your love, friendship, caring and support!