WoW! Has a month gone by????

I decided to go to my blog today and saw my last entry. Yikes! Where did August go? We have so many things happen in our family this month. Some great things and some very sorrowful things. 1st the Good!

We went to CHOP and saw Dr. Kaplan and the heart department. Angelo's heart severity had decreased from moderate to mild. YEAH!!! When he was born it was moderate to severe. SOOOOO, he is going in the right direction. Looks like no surgery unless those darn arteries and valve have any other ideas in the future.

Dr. Kaplan was so nice and Angelo loved her. She did suggest we go to a developmental doctor and a doctor that specializes in blood pressure. Angelo's was a little high (could be because of the anxiety). They want him to wear a 24hr. cuff. LOL!!!! Like that is going to happen! We can't even get him to wear clothes with tags! AND just this year was the blood pressure break through......................They used to have to give him a sedative to get a cuff on. Thank God for this pretty nurse! First time in 9 years that he didn't scream the whole time they took his blood pressure.

For the most part, My husband and I did not hear anything about Angelo and his anxieties, behaviors, etc... that we had not already heard or experienced everyday of his life. We went to Dr. Kaplan for HELP! Some things that we could handle when he was small are getting a little out of hand. And yes, we are NOW open to the medication route because we hate to see him so stressed out and want his quality of life to be better.

I need to back up and explain that we moved to PA out of choice to help Angelo. We thought that because we are a lot closer to a qualified doctor and facilities that we would get more help. Yes, we waited 7 mos to get in to CHOP via their scheduling. We filled out form after form. We experienced 2 days of appointments to actually be no better off than we were. We are now waiting for an appointment for a doctor to help us with meds. They said it would take 3 - 4 months to get this scheduled. On top of it all, I got those same stupid forms (2 weeks after our 8/08 appt) to fill out again in the mail! Do they not keep a file on him? It stated that as soon as they get these forms back, we will get a response via the mail telling us when his appointment will be. This response will take 4- 8 weeks for us to get. When our appointment will be? WHO KNOWS? Maybe around Christmas???? So, in the mean time what do you do?

1. I called his doctor here in town. The medical facility will not prescribe him anything due to not having enough knowledge about WS. But, if he has an ear ache "COME ON IN"! Since every other child is on some sort of ADD meds this amazes me.

2. Called his medical plan for a list of doctors. No one will see him before Christmas unless............He is about to kill himself or harm someone else. Then they will commit him to the hospital. Can you believe it????? How crazy is that?

Well, it looks like all we can do is wait. We are in the hospital shuffle.

We had also a family loss this last month, My husband's sister passed away from two blood clots going to her heart. She broke her ankle tripping down some stairs at a Pizza Parlor. She had surgery (plates, screws, ect.) She went in a week later to get another cast on after the swelling went down. The removal of the old cast released the blood clots and two days later she said that she didn't feel well and wanted to lie down. They looked over and she was gone. Such a shock to everyone. We are still waiting to see her walk through the door. It doesn't seem possible that someone so young and healthy could have this happen to them. My in-laws are taking it so bad.

My mother-in law has been so sick that they have taken her to the hospital twice.

I do not know how I could take losing a child. It is bad enough for us, being a brother or sister, but a child must feel like a piece of your heart has been ripped out. God bless the hearts of all that have lost a child.