Wow I haven't posted an update since July! A lot has happened since then. Greyson had his cardiology appointment and everything was great. He doesn't have to go back until December!!! I am both scared and happy at the same time. I am glad that he is healthy enough not to need to be seen until then but what if something goes wrong that we can't see? He also said we don't need to go monthly to have his saturations checked. WHAT?!?!? He has told me that having a saturation monitor at home would just make me a nervous wreck. He sure doesn't know me well. Not knowing what his saturations are will make me more nervous than knowing even if they aren't good. I had been trying before then to get one and since he wouldn't write us a Rx (even thought insurance had said they would pay for it 100%) so I contacted his pediatrician after the PT said that it wouldn't be a bad idea for us to have one at home, since she thought he looked kind of blue when she was out. The pediatrician was happy to write the Rx for it and we now have a saturation monitor at home. It is one of those really good monitors like what they have at Cardinal Glennon so I am confident that we won't have any mix ups like we have had at the pediatricians office. I have checked him a few times just for fun and he has been in the mid 80's!!! Yeah that is exactly where he needs to be. This way I can monitor him at home in case they drop. Dr. Rahimi did say that by the next time he see's Greyson he will likely be at the weight that the Fontan could be done if his saturations were lower. Since we all know things happen on Greyson's schedule that could change at any time. Hopefully he will be able to hold out until he is the reccomended 30-35 lbs. Dr. Rahimi also said Greyson will get the Synagis shot again this year. That will of course depend on insurance. Nate is starting a new job on monday YEAH!!! He will get the insurance information then so I can contact them to find out that they will cover the synagis shot. Hopefully it won't cost us a ton to have them done. I sure don't want him getting sick but maybe living in solitude will be better financially for our family then getting way behind in medical bills.
Greyson has gone so far developmentally. He started army crawling and was happy to be able to get around this way. Being imobile was getting pretty frustrating to him especially seeing Addison running around everywhere. He has now started crawling better on his hands and knees. He can pull up on anything and has been doing that for a few weeks now. He is always standing up in his bed when I get him up from naps. He hasn't quiet figured out how to get back down from there though. He thinks he is really something and is starting to get pretty gutsy up there as he will stand up holding on to the couch or whatever item he is holding on to with one hand. He might be walking around a year like Addison was. Who knows.
Speaking of a year. Greyson will be a year old in 2 months!!!! OMG I can't believe it has been a year, and what a long year it has been. We will be having a John Deere theme party and Icing Smiles has found a baker in our area that will be making his cake. Yeah!! The feelings I have this year about Greyson and his health are much differnt then the fear I had last year not knowing how he would do outside my body. He chooses to do things on his own time that is for sure, but he is so healthy considering how messed up his heart is on the inside.
We are doing a Congenital Heart walk in a little over two weeks in Saint Louis. Any donations would be greatly appreciated. Even a few dollars would really help us. You can go to the link HERE if you want to donate online or I can take donations in person as well. It means a lot to us that you all read this blog and would donate to a cause so dear to our hearts.
I will leave you with Greyson's 9 month pictures. Yes I know he was 9 months over a month ago, but I haven't been around an actual internet connection I could use the computer on and doing it from my phone is a royal pain. I'm not sure why a few of these are sideways, they aren't saved that way. Either way, enjoy.
No comments:
Post a Comment