We are 1 day shy of being home for a week and so far things are going well. Maddie has for the most part, comfortable days and somewhat rough evenings. We are working with nurses who come out 2x a week and are available 24/7 as well as Maddie’s pediatrician to try and find a balance in her meds that will allow her to be both awake and comfortable at the same time. So far we have not been successful; however we will continue to tinker. Unfortunately it’s a reality that the balance we are in search of may not be a possibility. That being said she spends pretty close to the entire day, eyes closed and resting COMFORTABLY.


So far it has been an adjustment accepting the fact that Maddie is not the same little girl she was prior to entering the hospital on February 7th. The brain trauma issues aside, the facts that she cannot be intubated as well as not being a candidate for a tracheotomy have just about eliminated any chances of her overcoming another illness. So we are left with the grim reality that our little girl is in a very fragile state.


It is extremely difficult to share such news with all of you, but we feel it’s important to be completely realistic with all of you who have been thinking of and praying for all of us. Just as importantly we want you all to know that we will continue on as we have for the past 3 years, with faith, hope and love for our family.


It is great to be home and a family again; it has been a huge boost for all of us to be together. The look of pure excitement on Nathans face when he walked into the living room on Tuesday to be surprised by Maddie’s presence had Christmas morning written all over it, and can be translated into nothing less than pure love for his little sister. It has been truly amazing to see an almost 3 year old little girl who has never uttered a single word, extract that kind of love from all those whom she has come in contact with as well as those of whom she has never even met. We learn from her every day; she truly is an angel and we are blessed to be her parents.


We will continue to try and update this blog on a weekly basis or whenever time permits. We cannot express enough how instrumental all of you have been in getting us through the last 2 ½ months. Family, friends, faith, hope and love has carried the days during that stretch and will continue to carry the days well into the future.

God Bless

Rick, Ann and Maddie.