Wisdom Heart

There have been many things that have happened regarding Sophia's treatment since her heart surgery. And I would like to cover them all eventually but, the purpose of this blog was to allow people to keep up with Sophia's daily activities.
So I am going to comment on some of the challenges we have had, as well as, some of the joys and accomplishments in the future.
But first I would like to thank all the people that helped us during the time I have wrote about thus far. I am not going to put any names here, as I am sure some would not like to be named. But, there were several people who took care of our house and pets while we were in the hospital. There were many who brought us food at the hospital (as you can imagine hospital food gets old fast). There were many who provided emotional support and encouragement. And there were also many who helped with the financial concerns we had at the time. And there were also some who helped us care for Sophia while she was home.
I really want to thank all the family, friends, and coworkers that helped us through this incredibly difficult time. We could not have done it without all the help we received and we will forever be indebted to those who helped us.
I would also like to thank my spiritual teacher, Khachab Rinpoche, who came to the hospital and provided the blessings we all needed at the time. And also thanks to all the friends and strangers alike that provided prayers and wishes for Sophia's good health.
And of course, I have to thank Sophia's doctor's and nurses. Especially her cardiologist and Cardiac surgeon. They make it possible for our daughter to experience life.
Now for the catch up.
The first big thing I need to mention is Sophia's genetic diagnosis. Tests were done and it was determined that Sophia had what is called 22q11 deletion, often called DiGeorge Syndrome.
This was something we were not prepared for. We knew the heart condition was very serious, but, it could be repaired and Sophia would pretty much be normal. With this diagnosis, not only did we have to accept what would likely be a series of health problems to come, but also that it couldn't be repaired.
There is a long list of health problems associated with DiGeorge. But most kids do not have all of them. And so far Sophia has only shown evidence of a few. The heart condition is the big one. The feeding disorder I mentioned in the last post is another one. Sophia has had some developmental delay but at this point it is not clear how much of that is related to her heart condition and the development time she lost while in the hospital. For now, It seems her delays are within normal ranges. She was recently checked for a submucosal cleft palate and there is no evidence to indicate any type of cleft palate at this time. I will post much more regarding these issues in the future.
Since the time of discharge, we have had many doctors appointments, therapist visits, and even some surgery. I will mention the surgery first.
When Sophia was discharged she had an NG tube that was used for all of the nutrition she received. As she was not able to eat orally, she was given formula through this tube in her nose with an electric pump. When it became evident Sophia was going to eat in this way for some time, we decided this issue should be addressed.
The NG-tube was uncomfortable for Sophia and partially blocked Sophia's only good nasal airway (she has unilateral choanal atresia). So we decided Sophia would be better of with a G-tube. Here is a link dealing with tube feeding.
This surgery was much more routine than the heart surgery and Sophia is doing great with her g-tube. There was some adjustment time while everything healed. But now Sophia is gaining weight and is in the 50th percentile for height and weight. I will make future posts on feeding, Digeorge, and cardiology in the future as it becomes necessary.
I think I will try to give an overview of all the regular therapies Sophia receives in our home through a state agency called First Steps in my next post.
But for now I will say goodbye.
Thanks for reading. I look forward to your comments.
-Michael