Birthday, Marshmallows, Beans and the Heart

Tyler turns 11!
Breakfast in Bed

Friends help Tyler celebrate.
Make Marshmallow guns out of pvc tubing...

Cake decorated by Amanda

Go to park to shoot marshmallows at each other!
The boys loved it!

Tactile play for Leo.
Bin of Beans and playing with pudding.
Both suggestions of his therapist.

We got the results of Leo's 2nd heart monitor test. Lots of information to process. Bottom line- we need to make an appointment with the cardiologist for either February or March. He would like to evaluate Leo again and run more tests. His heart rate is still high. The question that needs to be answered is his heart rate high because of his artrial septal defect (hole in heart) or because of some other unknown reason. We are not thrilled with the cardiologist who does not understand the syndrome Leo has so we also need to decide if we are sticking with him or finding a new doctor.
Monday we meet with ENT for Leo's pre-op for his ABR (auditory brainstem response) to determine his hearing ability. This test is scheduled to be done on February 1st.
Lots going on, but life is good and most importantly God is in control.

Life is Precious

This is a follow up to my last post where I wrote about a little girl named Mia who was denied life saving surgery by a surgical team at CHOP. I am hoping the story goes national. Here is the NBC 10 coverage.

I believe Children's Hospital has learned that you don't mess with mama bear! This story has blown up on the Internet in a way no one could have predicted. The Wolf-Hirschhorn syndrome site has had an all time high spike in traffic. And it appears that CHOP is now willing to talk more with Mia's family and consider her for a transplant. This is all good news. I am not sure we have heard the last from this little girl.

Our Social Worker was here 2 weeks ago and she mentioned that Bethany is becoming known as the agency that can find homes for children with disabilities. What a great reputation to have! She also mentioned that they are getting into Planned Parenthood clinics in our area and ensuring that women are being given ALL of their options. We are proud to work with an agency that values life.

Unfortunately there are many forces at work in our world today that devalue life. So, as parents, we ask ourselves: What are we teaching our kids? Are we teaching them to value life? Do they know what abortion is? How do they view children and adults with disabilities?

If we don't consciously teach our children that life is precious, no matter how small, no matter how disadvantaged then there will be precious few voices that will.

Is the quality of my son's life less?

We have been quiet on the blog front and I promise an everyday life update, but first this is something I never would have thought of could possibly happen. And I am angry.

We will be the first to admit when we welcomed Leo into our family, we did not think through all of the possible worst case scenarios. We knew it was God's will for Leo to become a part of our family. Even if we did take time to consider all of the different scenarios, I don't believe either of us would have thought of this one. This little girl has the same syndrome as Leo. This could be Leo. As far as we know Leo's kidney's are functioning properly but we have other issues. We are still waiting to hear from the cardiologist regarding Leo's heart monitor test.

I can not believe that this little girl is being denied a transplant. The part that really makes me angry is that her parents do not want her placed on a transplant list- they are willing to donate a kidney themselves or find a donor in their family and circle of friends. The only thing CHOP has to provide is the surgeon and follow-up care. She is being denied a transplant because she is mentally retarded.

None of us can predict the future. It is in God's hands. Since when do doctor's get to determine quality of life. Leo is developmentally delayed, he apparently has a syndrome which could cause him to not get certain kinds of medical care in the future. Leo is a child of God. He is my son. I pray we never have to cross this bridge, but if we do- you can be sure of this- we will fight.

I will be following up with this family to see who we need to contact to help them in their fight for their daughter's life.