Andrew's Hope: Andrew's update

Saturday, January 28, 2012

Andrew's update

Andrew had tried the ACTH injections again for his ever increasing seizures. This time it did not work. His seizures got worse not better. While he was on the ACTH we tried to get him off the Felbamate. As a result his seizures were so bad that they really concered both Allen and I . Anderew ende up with an emergency EEG. The results indicated what we were seeing. He was tapered off the ACTH and back up on the Felbamate. I met with Andrew's Neurologist and we discussed his seizures and med we have tried and options we have. After much conversation we decided to go ahead with Vigabtrin (Sabril) The sideeffects of this med are pretty severe......but then so are his seizures. So we started the Sabril. He then started the taper off the Felbamate again. The school called several times to say that Andrew;'s seizures were getting worse...ah duh!! I explained that to you many times but it didn't keep them from calling to try and send him home. We had meetings last fall to establish a sezure careplan and Andrew's PCP met with the school and we still get more calls then we should stating he is "having a hard day" Well you know...everyday he has a sezure is a hard day for him! I am happy to say that he is all the way off the Felbamate with no worsening of the seizures. Now we can see the true effectivness of the Sabril. I had a substitute nurse call me last week to say that maybe it wasn't apprpriate for Andrew to be at school if he was going to " be like this. Yep. that raised my hackles. If they have the issues and are uncomforatble with his seizures then they can hire a nurse to sit with him while he is at school.

Carina and Andrew's bond continues to get stronger and stronger. She is doing very well with her pre alerting. The school and school board continue to resist Carina being there. Now that she is there they have decided she is difficult to contrrol and needs her own handler and we need to find and hire the person ourselves as well as pay this person. Thanks to the DEiabilty Right Center I am fighting there decision. Somehow this will all work out and Andrew and Carina WILL remain together. We worked to hard for this not to.

Alex is Andrew's new baby brother and finds him very interesting. Alex will mimick the noises Andrew makes. Jessica thinks the world of both her brothers. She says that Andrew is her favorite brother with seizures and Alex is her favorite brother with out seizures. Having 3 kids is the best things I could have ever done! Although I am very busy I would not change it for anything!

My Dad is not doing well and I worry for him. He is a fighter and I know that he will make it over this bump as well. Mom does a very good job taking care of him. So I ask that if you are reading this please pray for my Dad's health and for my Mom to continue her great job! :)

1 comment:

NancyNovember 22, 2012 at 3:15 AM
Jamie, my heart just bleeds for you and the obstacles that continue to be placed in your path! But like your dad (who takes a licking & keeps on ticking), you meet each of them with determination and greater success than anyone I know. My prayers are always with you & Allen, the kids, and your follks. Love from Ohio, Aunt Nancy
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About Andrew

Andrew is a very handsome wonderful 6 year old boy. He gives us so much joy to have him in our life and, just like any parents, we want to do everything we can to make his life better.

Andrew has bilateral hearing loss and a difficult to control seizure disorder. Andrew also has a visual processing disorder which essentially makes him "blind". While he can visualize objects, he can not process and identify what he is seeing. On top of this, Andrew also has a swallowing disorder which makes it necessary for specialized feeding.

The seizures Andrew has been diagnosed with have also included Infantile Spasms, which is a very serious diagnosis in a child. Due to the severity and frequency of Andrew's seizures, he is termed as "Global Delay" because of the interruption they cause in his daily learning and processing of information. This is despite of being on multiple medications and therapies.

At 3 years of age, Andrew took his first steps. We are still waiting for the day he says his first word. Andrew has come a long ways in the last 3 years. Having Carina enhance her training to include tethering will be wonderful for Andrew. We have fought long and hard to get him walking, including fighting the school when they wanted to put him in a wheelchair. Andrew should be indepdendent as safely possible and noone should ever hold him back.

Carina has improved Andrew's long term quality of life by alerting and providing comfort before, during and after seizures. She can also help to be Andrew's eyes and ears and provide a much needed source of support and comfort to him as he meets the upcoming challenges in his life. We heard about a great organization that places highly trained dogs.

4 Paws for Ability is a non-profit organization dedicated to helping children and adults with disabilities. The dogs are specially chosen and trained specific to each individual's needs. Our previous fundraising was on behalf of 4 Paws For Ability in order to minimize the wait time and allow us to participate in the process of placing a dog with Andrew.

Why 4 Paws For Ability?

4 Paws For Ability specializes in training service dogs for children with special needs and has a very high success rate. We encourage you to visit their site at http://www.4pawsforability.org/ to learn more about this wonderful organization. 4 Paws For Ability is a 501(C) Non-Profit Agency and all donations are tax deductible. 4 Paws for Ability's mission is to "Enrich the lives of people with disabilities by the training and placement of service dogs to provide individuals with companionship and promote independent living." and "Assist with animal rescue whenever possible by obtaining many of our animals from shelters and rescue groups." Through a family friend, we heard of another family currently undergoing the training and placement process of a seizure response dog for their 4 year old daughter Caitlin. 4 Paws For Ability is very highly recommended and has placed over 500 service dogs!