Rhett's Performances

This was the showcase performance(sorry about the quality I am not sure what happened) that Rhett was in at the Shakespeare Festival this past weekend.  I am trying to get the video where you can see it better uploaded it is giving me grief.

As soon as I can I will see if I can get the other videos that we have uploaded so you can see how funny Rhett is, and when I say he is dramatic I mean he is dramatic.  But until I can get that loaded you can watch it this video or you can locate it on youtube at

https://www.youtube.com/watch?v=5831ofwUAag

Enjoy Rhett and his friends!

The big meeting and more

Well we finally had this big meeting that we were waiting for with all of Rhett's doctors and heck it was a long meeting.  It lasted 1 1/2 hours.  One of his doctors could only be there for a 1/2 hour since he had another meeting to attend.  But I was glad that he was there even if he had to leave early.  So my husband and I were the first ones to show up to the meeting since we were told that they had to start on time at 12:00pm since the pulmonologist had another appointment at 12:30pm.  That is cutting it close.  We had the cardiologist(heart doctor), the pulmonologist(lung doctor), the pediatrician(his normal doctor), the orthopedic(bone doctor) surgeon, the geneticist(not sure how to describe his job), one of the cardiologist assistants, two deaf school social workers, and the primary children's social worker(the one and only helper getting the meeting pulled together).  It was crazy having all these people in one room at the same time knowing that they really want to help Rhett and they are working together to do what is best in their minds for Rhett.

The pulmonologist presented his piece of information and then had to leave early as the rest of us discussed everything. His lung volume, his pulmonary function, and his lung capacity all decreased since the last surgery.  But they said that by the graph that we received from the doctor it has only dropped once so they said that wasn't a very good thing to go by.  In order to go by that drop on the graph it would have to drop again after surgery again.  So the doctors agreed that Rhett should have another surgery and then be tested again after surgery to see if he does in fact drop again.  If he does drop then the doctors all agreed that he wouldn't need anymore surgery and we go into medical maintenance.  Meaning a hospital bed for him to help make sure he is sleeping well and wearing his bypap, taking his heart medication, and taking his lung medication everyday.  They talked about the possibility of Rhett maybe being depressed which he has been tested for and is not.  We are still trying to figure out how to help him.  I have a few at least 3 social workers helping me which is great because trying to do all of this by myself was so not going to happen very easy or fast.  We finally got out of the meeting about 1:30 to 2 pm.  It was stressful at least for me anyways.

After leaving we had been told to bring Rhett in for a pre-op appointment so they can decide what it is that the surgeon wants to do.  We set that appointment up since he is already on the schedule for surgery.  But the pre-op appointment was set up soon after the meeting, but the worst part for me was that normally I know a month in advance what kind of surgery Rhett or any one of my kids will be having but this time it was not that much time.  So by the time the pre-op came around I was super nervous.  We went in and talked with the doctors had the normal x-rays taken and an extra to get a bone growth survey done too.  The bones are growing at the same speed he is aging.  That is a good thing.  The doctor then told us what he feels would be the best thing in his mind to do for Rhett.  It was Rhett, daddy and I who were in the room talking discussing the surgery.  The doctor said that he would like to revise the left side meaning breaking ribs on the left side of his body and expanding and pulling the chest out.  After the doctor told us all of this and daddy asked some questions I turned to Rhett and said, "Ok Rhett what do you want to do, the doctor said he thinks this might help if he revises the left side and doesn't do anything to the right side.  What to you think?"  As he looked at me I just wanted to cry seeing his little mind working to understand he is deciding to have surgery or not.  He nodded his head.  I had to clarify, "So you are ok with that and the is the surgery you want to have?"  He nodded again and I looked at the doctor and said, "Did you get that?  He is willing to do the surgery."  The doctor said ok and we are all ready to go.

Now the wait is on.  Surgery is approaching and it is going to be a big one again!  It really sucks but I guess there is no way around it. 

I also have to figure out some fundraising things that I can do with my family to help us get the money we need to finish our basement.  That way I can move Gavin out of the bedroom Rhett and he share so that way we can get the bed that Rhett needs to have in order to sleep better at night.  I could totally use some ideas and help.  If you have any ideas I would love the input.  I will be talking to someone at a bank or something like that hopefully tomorrow to see if I can open an account to have all the money that is raised placed into, and as soon as I do I will have something on my blog where people can donate.

I will update after the surgery it won't be a long wait I promise.