Well nothing new is really happening here. I went home on Thursday night and didn’t come back until Sunday morning! I wasn’t planning on staying that long but the nurses that I had on were wonderful and knew that I needed the break. It will be eight weeks tomorrow that we have been here! And really we aren’t much further ahead than when we started. The only real change has been the fundo and g tube placement. I have to tell you again how impressed I am with how well he is doing with this! I was so anti fundo and it has truly been awesome!

I was able to book the photographer and the DJ while I was home (whole reason I went home) so I don’t have to worry anymore about that. I can’t wait until the day that I get married!!! J and I have been through SO SO SO much together and we have been able to overcome all the bumps in the road. And to top it off we have the most AMAZING son in the world who has changed our lives in ways that we never could have imagined!! Good and bad LOL

So I am waiting to see IGT to discuss more about the botox. And there is one guy in particular that I know in IGT and he is NOT going to be anywhere near A for the botox. He had issues putting a gj tube in and *I* had to tell him that it wasn’t right. So there is NO way that he is injecting botox into saliva glands!!!

I also spoke yesterday for quite a while to A’s nurse practitioner. I told her once again that I would really really like to see genetics. I remember this coming up a LONG time ago when we were in the NICU but it never came to anything. And I have been bugging since we have been here. So finally she agreed to it because there IS the possibility Ashton could have some sort of genetic mutation which means that if I was to have another child they could have the same issues. And I told her that I know a few moms that didn’t get things looked into until they had their second child who started to present with the same issues as the first. I also said that I would be pretty upset if this were the case when I had asked to see genetics many many times. I want to be able to make an informed decision. Now I truly hope that this isn’t the case but maybe genetics might help us lead in a way that could be helpful.

Please say a special prayer for our little friend Ryan…he is on life support and not doing well. He was born at 28 weeks and was just diagnosed in September with mito.


3 responses

  1. CG

    Genetics drs are very interesting. Isabella was looked over thoroughly. You know they can come in and look at the child and start to get an idea of what type of genetics issues they may have based on cetain features. Not that they will find a thing wrong with Ashton. Genetics looked at both my kiddos and he said immediately about Landon he didn’t see anything remarkable but did the downs test which was negative. Isabella was having some issues (the wonderful liver) so we tested her for downs and storage diseases. All negative. He said she had coarse features and looked like me. I geuss I have coarse features? You guys are doing so well. 8 weeks is a long time for you to be in the hospital. but I know you can’t leave until you get answers. Take CareChasity

    March 6, 2008 at 5:23 am

  2. The Hull Munchkins

    I’m glad to hear you got away from the hospital for a few days. Sometimes that is the best thing you can do to help stay focused. The genetics thing sounds interesting. We also considered having our family evaluated in the NICU, but she had so many issues we just never did.Hope Ashton is still keeping his happy spirit! His smile just melts my heart and makes me smile too.-Patty

    March 7, 2008 at 1:29 am

  3. Angela

    (((hugs))) — Shannon, you guys are very much in my thoughts. Just wanted to stop by and give some cyber hugs. Send our love to Ashton.Love,Angela

    March 7, 2008 at 4:44 pm

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