Andrew's Hope: Each sunrise brings a new ray of hope

Saturday, April 24, 2010

Each sunrise brings a new ray of hope

My Dad recently went through very extensive heart surgery. He had a double bypass, aortic valve replacement and tricuspid repair. I was there with Andrew. We sat with my Mom and my brother as we waited anxiously for the report that he was out of surgery. It was totally awesome to watch Erik bond with Andrew during the few days I got to see him. As we waited for my Dad, Andrew decided to make the most of it. He began walking around the waiting room. He didn't hold on to anything and he would squeal when he reached "his" destination. My Dad made it through just fine. When it was my turn to see him in the CVICU, I wasn't prepared for what I was going to see. I am a nurse, so I see this stuff all the time. That is what I told myself. The reality was far different!! Seeing my Dad on the ventilator and all the tubes and IV lines everywhere was scary! I talked to him and held his hand, although he was asleep I knew he was strong and was going to make it. He progressed well and made it to the cardiac unit. He walked talked and even laughed. I visited with him during the day and with my Mom at night. I had some wonderful mother-daughter time that we both needed. Of course some of it included eating and retail therapy (shopping!!). It was on Thursday night that I found out the doctors were sending him home early to prevent infection, and Andrew and I couldn't be there. It was a very hard decision to make, but we went home Friday morning. My Dad came home late Friday. He was progressing well, but somewhere along the way he stopped and actually started to decline. So, he was readmitted to the hospital. As I await any news from my Mom, I hope and pray all goes well for my Dad. Andrew continues to progress and much to Allen's surprise he is walking everywhere! From the couch in the living room to the door in the kitchen. He is noticing more things and he seems stronger. He has days when he eats very well. and on the days he doesn't he now has the feeding tube to ease my worry about him not eating enough. He does have some hypergranulation tissue around the tube opening. We are treating it and it looks better everyday. So as Andrew continues to progress I ask everyone to hope for a speedy and healthy recovery for my Dad. We are hoping to go see my Mom and Dad in the fall. I can't wait to see how much Andrew will change by then. I Love you Mom and Dad!!

Sleeping in grandpa's hospital bed.

Sitting with mom.

Still with mom.

1 comment:

andrewshopeApril 26, 2010 at 5:21 PM
We love you,too, Jamie! You were a big help while you were here, and it was GREAT getting to see Andrew!
ReplyDelete
Replies

Add comment

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!