Nerves…

Well for starters the weekend was pretty good. Daddy and I were able to take our little man out of here yesterday on a day pass!!! So we left here about 1pm and headed home. He really didn’t know what to think about being in the vehicle…but after three months who can blame him? When we left here his shoes would not even go onto his feet! LOL So we know he has grown!

I’ll tell you though, I was more nervous leaving here yesterday with him than I was the day we left the NICU after eight months! I was so afraid that he was going to have an episode in the car but thankfully he didn’t.

It was very cute to see how he reacted when we got home. As soon as we pushed his buggy into the living room he was going nuts!!! And of course daddy got him a big huge TV so that was put on right away for him and he thought it was great!

We got ready to head over to my aunts for Easter dinner which was nice because we have a nighttime routine of Ashton having a shower. He loved it! When I was drying him off he started to gag and went very off colour and into one of his fits. It didn’t last long but it really freaked me out.

Everyone was pretty surprised when we walked into my aunts house with A! We had a great dinner and A slept for a couple of hours because he had not napped all day. We had to be back here for 10pm but traffic was absolutely insane that we didn’t get here until about 10:30pm.

Today…I spoke to his complex doctor and told her that I wanted to give the botox a try. Well botox is tomorrow!!! I was told to go down to IGT (where they do the botox) to sign a consent. When I got down there I told them that I wanted to talk to the doctor that would be doing the botox before I signed. I don’t think this is a common request because she wasn’t too thrilled about looking up who was doing it and then asking when he would be available to speak to me. I ended up going back about an hour later and he was great. He explained everything again to me and did happen to tell me that botox is not usually used for pooling of secretions. What?! The docs told me that this was a thing that is common here. Well he told me it is common to use for drooling but not for pooling. So A will be there first case like this…he did however say that it makes sense that it COULD help so I am holding onto that. I have to say though that I am VERY nervous. A couple of times today I almost thought about cancelling it. But I know deep down that if I didn’t at least try it that I would always wonder what if.

He will also be getting a long awaited CT scan tomorrow since he will be under a general. The docs aren’t thrilled and keep saying it won’t show them anything but I cannot stop wondering so it needs to be done.

I had another genetics doctor come in to see me today and meet A. She is actually a neuro genetics doctor which kind of fits him better I think. She was also very kind and caring and took her time. She looked A over for about five minutes and just watched him. Well her conclusion was that his issues and what she sees are not related to his prematurity. I asked her about the CP diagnosis and like she said, CP is such a wide range that it easier to diagnose that anything else. She really doesn’t feel that this is what is going on though.

She said that she was happy with the testing being done but that she does have some other ideas if everything was to come back okay. She did mention a spinal tap to check his neuro transmitters as well as a muscle biopsy. And the last thing she mentioned was mito. Hmmmm interesting is all I have to say. Scary too.

So please hope and pray that this botox does the trick for his nasty nasty spells. I don’t have high hopes but somewhere inside I still have some left….

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8 responses

  1. Miracles

    Lots of good thoughts and prayers for Ashton today. Good luck with everything. Keep us posted!

    March 25, 2008 at 12:19 pm

  2. Vickie

    Nice to hear they are finally looking into things.

    March 25, 2008 at 12:23 pm

  3. Trisha

    Ashton continues to be in my prayers.

    March 25, 2008 at 5:16 pm

  4. Trisha

    Ashton continues to be in my prayers.

    March 25, 2008 at 5:17 pm

  5. huether family

    that’s awesome you got to bring him home for a bit, gave all of you a break from the hospital. I’m sure all your family was happy to see him also. i’m glad that you are finding another doctor who you like and maybe will get some answers for Ashton. I’m thinking of you guys and pray that everything goes good. take care and talk to you soonLove yaMandi

    March 26, 2008 at 3:29 am

  6. Vickie

    Quick question…when Ashton had the sleep study done, did he ever have any episodes of apnea?

    March 26, 2008 at 4:15 am

  7. ladydianne

    Hi Shannon, Jeff and AshtonHow is the botox working? I hope that it is working soon. Have you heard about the CT scan yet? We want to know about it.Right now.It is a bright sunny day. Your mom had the new old car, I like it. I always ask your mom how much gas is in it! She always says it is mostly full.We are having green tea, ha ha, good for PMS. Ha Ha Ha…We had home made soup that ma made. I gagged on my sandwich today so your mom had to dig it out of the roof of my mouth. I was laughing, but your mom wasn’t sure…ha ha ha!I am still going 3 mornings a week to Shoppers Drug Mart putting stuff on the shelves with my helper.We are going to have black licorice now with our green tea, ewww!We are going to go out on the driveway to take in the sun for a few minutes, then physio.I pray for Ashton every night and think of you often.love Sean

    March 26, 2008 at 5:06 pm

  8. Vickie

    Sean’s comments crack me up!

    March 27, 2008 at 12:51 am

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