Monday, February 25, 2008

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!

3 comments:

Judy said...

Wow, Laura.

First of all, kids are quite phenomenal. After watching my nephew Wes and his accomplishments in his life as a child with Down Syndrome, I am constantly in awe and amazed. I think you will be, too.

(((HUGS))) to all of you. If you haven't ever read the story about going to "Holland", you really need to - here's the link on my blog to the post about it...

http://judysbragblog.blogspot.com/2005/07/welcome-to-holland_31.html

You are in my prayers. Always.

Lolo said...

Laura,

I'm so sorry about Cara's evaluation. I can't even imagine, as a parent, all of the emotions that must flood in.
You and Ben are amazing parents and were so right when you said: "We still except great things from our little girl and know that she will be the best Cara that she can be. "
Cara is an amazing girl and I know she will do nothing less than wonderful, amazing things and make you proud!
I know this diagnoses must be scary, but like Judy, wanted to say that my cousin was told he would never walk and would be confined to a wheelchair his whole life, due to a rare genetic disorder. Today he not only walks with just crutches, but drives all over the place and plays wheelchair hockey and basketball! He walked and defied his diagnosis! So, as you can see, kids are amazing and resilient and always surprising us in just what they can do. :)

I'm very glad to see you have a strong team of doctors and therapists and a parent's group. It sounds like the resources and support is there, which is so important. You know where to find me, I'm here for you too. :)

You have two gorgeous, loving little girls. Everybody is in my thoughts always. Thank you for updating us too, I shouldn't lurk, I need to comment more. Just know I'm always thinking of you guys. You are such a strong,beautiful family,always showing the rest of us how to be.
Lots of Love and hugs,
Lauren
xoxox

Anonymous said...

I'm sorry the evaluation was not as great as you were hoping it would be for Cara - however, keep expecting the best of her, as you said you were doing, as she'll still be wonderful Cara with her becoming every bit the person she is suppose to be.

With good support teams and loving dedicated parents, as you and Ben are she'll thrive.

Mary

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