It's been a while. Ami is changing and growing so much everyday. He is talking more. He has 7 teeth, and is biting now. He also has started walking! He'll take about 4-5 steps and sit down. He still isn't wanting to stand up on his own without support yet, but his therapist was confident we'd see it soon. The therapist is very pleased with where he is. She is a little concerned with the growing left side dominance that he is doing. She is also a little concerned because, he kinda drags his right leg and his right foot turns outward slightly. She felt that it is an issue that should work it's self out. Now that he is walking I'm sure she's going to be very happy. We also have had the swallow study done. It was interesting. He wouldn't drink from a sippy cup, or out of a straw because he was so upset. From what they did get from the bottle is he has texture issues. He doesn't seem to like to let things touch the back of his tongue. We has back to speech therapy, but his normal therapist couldn't be there. We worked on exercises to strengthen his muscles. We don't know the results from the swallow study, or if we will have to go back for another study to drink from the cup and straw. We still go to physical therapy monthly, and speech every week.
The hospital finally called us about the Synagis treatments. I was under the impression that we would have to go to the hospital to get them, but there is a nurse that comes to you. He will get a shot every month. The medicine gets Fed-Exed to us, and we have to keep it in the fridge. The not so great part about the medicine is that it's $1500 a treatment. We have met our out of pocket for this year, but starting in January we will have to meet our out of pocket again. We will see in January how much this is going to cost us after insurance and see if it's something we can afford.
It's getting pretty hard to say good bye to my little baby. I think for me walking was the last "baby" thing that Ami needed to accomplish and it's here. He is turning into a toddler, and really showing his personality. He doesn't want to be held. He doesn't want anyone to take him away from what he's doing. He is throwing fits, and tells you "done" when he doesn't want you to love on him anymore. He wants to walk every where. Words should be flowing from his mouth any day. He wants to know what everything is, and how it works. He is wanting to play with other kids, and play as hard as they do. I would really like to get him around children more.
We are getting excited for the up coming holiday season. Halloween was fun, but he fell asleep before we could get to all our stops. Thanksgiving is in a few weeks, and we are praying for good health so we can participate this year. We are wanting to make his life as "normal" as possible.
Josh tells me that I'm being irrational when I freak out about germs and illness. I don't know what I'm going to do when he starts kindergarten. I want to say thank you to you all for being so considerate about illness. Everyone has been great about telling us when someone is sick or staying away if they aren't feeling well. So far he's been healthy, and his breathing treatments are controlling his respiration rate.
Every week on Thursdays I post on Facebook about Thankful Thursday. I ask for people to tell me and others what they are thankful for. This last Thursday I posted that I was thankful for my son (like always) but, I am also thankful for his disease. My son has saved me and my marriage. His disease never let's me forget how truly lucky I am. It makes me make the most of everyday and every moment. I will never take my child for granted. My son makes me want to take on the world, and make it a better place for everyone. He is my hero.
Good bye baby Ami, hello my big boy. Ma loves you.
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