still waiting
Posted Mar 9, 2011 4:32pm
I just realized how long it's been since you've all been updated. So here goes...
We are still on the east coast undergoing treatment, and I still have no definite answers. Brian " Daddy" had to go back to work for a while and it was hard to say "goodbye". It's so hard being separated from friends and family and even our own children. Kaden sure is a trooper though. The youngest kiddo on record to use Mestinon as treatment for para-sympathetic failure seems to be...a blessing. There are side effects, but he's hanging in there.
He is making so much progress in some areas, and in others, not so much. His little heart is still quite sick. He is still on oxygen and dependent on his g-tube, but is gaining a little bit of weight. He is a more energetic, and happy. For those of you that didn't know, Kaden suffered from a terrible respiratory infection that lead to pneumonia and set us back quite a bit. We have another long appointment with the doctor on the 26th. We have short appointments with the nurse every week to make sure that Kaden is tolerating the drug and his private nurse "my mom" to keep him going at night. Unfortunately, due to his severe respiratory issues, we haven't been able to initiate round 2 yet.
So, we still have no final answers yet, but I do feel like I can finally say without hesitation that "Our son WILL grow big and strong. He WILL go to school, make friends, drive, and someday have a family."
Brian- You are an amazing husband and father. I have never seen a man make so many sacrifices for his family, and without complaint. You're an inspiration to us and you keep us strong. Your faith and gentle words are of great comfort.
Mom- You are an angel. Nothing I say can capture the gratitude in my heart that I carry. God truly blessed us with you and I'm ever so grateful to have you here with us on this part of our journey.
We are still on the east coast undergoing treatment, and I still have no definite answers. Brian " Daddy" had to go back to work for a while and it was hard to say "goodbye". It's so hard being separated from friends and family and even our own children. Kaden sure is a trooper though. The youngest kiddo on record to use Mestinon as treatment for para-sympathetic failure seems to be...a blessing. There are side effects, but he's hanging in there.
He is making so much progress in some areas, and in others, not so much. His little heart is still quite sick. He is still on oxygen and dependent on his g-tube, but is gaining a little bit of weight. He is a more energetic, and happy. For those of you that didn't know, Kaden suffered from a terrible respiratory infection that lead to pneumonia and set us back quite a bit. We have another long appointment with the doctor on the 26th. We have short appointments with the nurse every week to make sure that Kaden is tolerating the drug and his private nurse "my mom" to keep him going at night. Unfortunately, due to his severe respiratory issues, we haven't been able to initiate round 2 yet.
So, we still have no final answers yet, but I do feel like I can finally say without hesitation that "Our son WILL grow big and strong. He WILL go to school, make friends, drive, and someday have a family."
Brian- You are an amazing husband and father. I have never seen a man make so many sacrifices for his family, and without complaint. You're an inspiration to us and you keep us strong. Your faith and gentle words are of great comfort.
Mom- You are an angel. Nothing I say can capture the gratitude in my heart that I carry. God truly blessed us with you and I'm ever so grateful to have you here with us on this part of our journey.
To my very special friends and family "you know who you are"- Thank you for your continuous prayers and support. In a very dark and lonely season of our lives, you know just what to say when I need you, whether it be a text, a FB message, a phone call, or email...I need it.
Love to all! I will try to update soon.
No comments:
Post a Comment