Busy

Wow it's been a busy two weeks. It's going to be a busy next two weeks also. The garage sale took a lot of time to put together but it was amazing. It was the biggest garage sale I have ever seen. We had everything priced to sell and people were buying things in the box loads. We still have so much stuff. Danny and Gina didn't even get around to putting the things in that they were wanting to sell. I found a few more things that I had forgotten about. So we are having the sale again on the 16th of July. It won't be as big or as time consuming but hopefully just as successful. Saturday was a very hot and long day.
Ami stayed with my mom that morning. It was a nice not to have to worry about him. Actually my parents got to spend the whole weekend with him. I think they really enjoyed that. My dad works so much he hardly ever gets to see Ami.
This is going to be a busy next couple of weeks also. Tomorrow and Thursday I am baby sitting a little girl all day. Friday is the 4ht of July celebration they have every year in Republic. The next week Ami has another physical therapy appointment, then we head to St. Louis for more testing. We'll see Dr. Rivera again and we had better get some test results. I applied for SSI and disability for Ami last week. The case worker thought we'd get a decision quickly on him. I doubt we get approved and we'll have talk to an attorney. We'll see.
We have taken Ami swimming at the Elks twice now, and he has a little pool at home he plays in. He loves the water! He's my little fish. He is even getting a nice little tan. My mom got him a pool to keep at her house and he has been in it once now. We have looked into a life jacket so we can take him to the river.
Ami over all is doing really well. A couple weeks ago I was getting pretty worried about him. He wouldn't eat. At all. No matter what it was or what I did. I thought it was teeth but I began to second guess myself. Turns out mommy instinct was right. He has cut his third tooth, top left. I am sure the other one is right behind it. He is eating great again. He is also in a much better mood. He is "crawling." I'll have to get it on video and post it on here to show how he does it. It's not on all fours but it's close. He has figured out where his books are and he goes to them and pulls them all on the floor. He says uh-oh, mama, and dada. He plays peek-a-boo and waves. He is also trying to throw things.
We are getting ready for the big day that is coming up soon. The birthday. Josh and I are so excited. The invitations are just about done and ready to mail. We have the cake picked out, pictures booked, and activities planned. I can't believe he is almost a year old. Time has completely gotten a way from me.

A Diagnosis?

It's been two weeks since Ami's lung biopsy at St. Louis Children's. We still don't have a diagnosis. We are still waiting for two tests to come back. One is a surfactant test and the other is a genetic test for NEHI (.Neuroendocrine Hyperplasia in Infancy). If you had to choose one of these horrible lung diseases this would be the one to pick. In most cases the child out grows their need for oxygen. There is not a specific age when the children out grow the need but usually by school age.There is no medications that can be taken to help and no cure. In most cases all that is needed is oxygen with the occasional breathing treatment or dose of steroids when sick. It's been a battle the past week trying to get a hold of the doctors in St. Louis to find out what is going on. Dr. Moore has been fantastic trying to help us. She called from home last night when she finally got the email from Dr. Rivera in St. Louis. We will be going back to St. Louis on the 7th of July for a pulmonary functions test (PFT). We are planning on making a weekend out of it. Denise said we could stay at her house, we have those tickets to the ball game, and maybe the zoo. I'm hoping this will be his last hospital visit for a while. We figured it out the other day. He has spent basically a month of his little 9 month life in a hospital. Ami is now going to Physical Therapy. His first visit was yesterday. The therapist said he is about a month maybe two behind. She didn't think it would take very long for him to get caught up. She gave me some good exercises to do with him. They will help him figure out how to crawl, get into a sitting position from his knees, how to get to his knees from a sitting position, and how to roll over. We go every other week. While doing her exercises she quickly discovered how active he is. She asked me if he moved like this all of the time. My answer "yep, until he passes out." She also made the comment "you're very stubborn, aren't you." I just giggled. She figured him out pretty quick. She said that he is one of those kids who are going to what they want when they want and no matter what you do you can't change that. He gets that from his daddy. Haha. There is a light at the end of the tunnel. It may be dim but it's there and we are running towards it.