Today is J's first day off of Prednisone (steroids) in a while. I am crossing my fingers he is able to stay off of them for the next month so he will be able to do T-cell testing. I used to despise the steroids but this time around I have been impressed at how well they worked on him. He is breathing so well and I rarely hear a wheeze out of him.
He starts working with a behaviorist in early June. I'm excited to see what answers she has for Isaac and I. I know I tend to put all my eggs in one basket but this is how a desperate mother operates. Someone has to be able to help him. I find myself asking the question "would I rather have the lung disease or the autism to deal with?" Everyday my answer changes depending on what the problem of the hour is. At this moment I will choose lung disease. Autism sucks.
Oh wait, I don't have a choice. We are dealing with both and this is life. His life. Tell me it will get better... for his sake and my sanity.
Morgan & Jonah 2008
Jonah's Great Strides Team
About Me
- Jessica
- Isaac and I started dating when I was sixteen years old and a Jr. in high school. We met at the Beach Boardwalk, on one of those warm santa cruz summer nights. We married three years later in the Salt Lake temple. We then kissed our families good bye and moved out to utah to start our new life together. We immediatly wanted to start a family but that just was not in the stars for us. Five years later we were blessed to find out I was finally pregnant. I was only able to carry our baby for thirteen weeks before I miscarried. I was devistated! Our prayers were answered and three months later I was pregnant again and walking on egg shells. In March of 2006 our beautiful Morgan was born. Then eighteen months later our angel Jonah was brought into this world via C-section. Life has been a roller coaster, many ups but this past year many more downs. Today we are learning to live, laugh and love as a family with the challenges that are thrown our way.
Morgan
Jess & Isaac
6/4/01
Morgan at the farm
California
Jonah
Me & Hubby
I wish I could say that it gets better, but I'm so frustrated and cranky right now that I would say it doesn't!
ReplyDeleteTruth is, it comes and goes. Sometimes I feel like I can't take anymore, and other days I feel optimistic! Maybe I'm bipolar! LOL
I'm keeping everything crossed that Jonah can stay of the pred! I know what you mean. I hate pred and it's side effects, but actually it can work really well for the lungies!
ReplyDeleteI flat share with a guy with autism and he is the sweetest guy. I asked him how his autism has changed over time and he said to me that according to his parents, his pre-teen years were the most difficult. He's a really lovely guy too, so I would just like to say, that despite Autism and it's difficulties that people face on a daily basis, it makes a person who they are and Dan has said although he sees the world in a different light, people accept him for who he is. Obviously I've never met Jonah in person but from what I read about him and see in the pictures, his personality shines through all his medical issues and you've done such a fantastic job with him too.
Big hugs to you and really hoping that Jonah's lungs give you all a break for a bit!
xxx