Well another week has gone by and we are getting so close to the wedding!!! I have been working on my speech this past week and boy I’ll tell you it is going to be VERY hard to read this in front of everyone! I read through it a couple of times as I keep working on it and adding to it and I start crying every single time. Oh well, that is me….emotional Shannon.
As for my little man, he has been keeping things interesting around here. A couple of mornings last week I awake to the sound of him grinding his teeth. I don’t have the monitor on yet I can hear him from his room making this awful sound. I didn’t really think much of it because he has done this in the past but never longer than a few minutes.
Well two night ago I awoke to him screaming and grinding his teeth so bad it was kind of freaking me out. For an hour I sat with him, tried to console him and get him to settle down. I would have to pick him up which is a big no no in this house with him, but it was the only way to eventually calm him. As well it is heartbreaking that he seems in so much pain.
So after about ten minutes of holding him he would settle and go to sleep. Then suddenly his eyes would fly open and he would start again. Once he was calm for a good five minutes I would place him back in bed and things would be fine. Then an hour or so later it would start again. I finally got out my video camera to tape what he was doing.
I have come to the conclusion that it isn’t night terrors. Anyone I have spoken to says that the kids are not aware of anything during these episodes, however he seems to be aware. I don’t think it is reflux as it is under control the best it can be. And besides that, he had such severe reflux for so long before that even the doctors couldn’t believe that he showed no outward symptoms when we realized how bad it was.
The day yesterday was awful. A was having little freak outs off and on and of course with his freak outs comes blue spells. I am just beyond frustrated with what this little guy has to go through!!!!! He is NEVER a grumpy kid so when he is I know something is up. I just wish he could tell me what it was. I ended up having a little cry fest with him wondering when WE are going to catch a break?!
I got so upset that I called his doctor and was told to bring him in. Well what I forgot was that I had no one to help out and pick us up. J had the van at work and the car seat was in the van. So I packed him up and went down to the rental office. I asked the landlord who is just sitting in the office all day if she would mind him sitting with her for about ten minutes while I took a cab to go get the van. She said no. I left the office crying and went to come back upstairs but A started freaking out because he thought we were going for a walk. So I went back down and decided to walk him to the doctors. What a bright idea in the heat?!
Anyhow, he checked A out. Throat, ears, tummy, temperature and all was fine. I showed him the video but he wasn’t too concerned. He said he knows many kiddos that are mentally handicapped that teeth grind. Okay, but A isn’t textbook. He laughed and said he knew that but didn’t think it was a big deal. I told him that I was worried that it could be some sort of seizure. He didn’t think so. Ugh!!!!!!!
So anyhow, last night was a bit better than the night before but it is way too odd to me. As well, A is having a lot of blue spells during the day which haven’t been happening for a good two months. Does it ever end?
If anyone thinks they may be able to help, let me know and I will send you the video to watch. Other moms opinions mean more to me than doctors.
Well we are waiting on daddy to get home to head to Chatham for the weekend to have our wedding shower tomorrow! Hopefully it is nice out and the rain holds off so we can have some swimming time!
A woke up this morning and I put him on the couch while I went to put on my coffee. This is what I found when I was done. He stayed this way for an hour! Isn’t he just so friggin cute?!
Well it has been a very interesting day. A didn’t get up until almost 10am and wanted to go back to sleep at about 12:30pm but I had to get him ready to take him to the ped. So things went good there. He got his RSV shot and did so well! He held his breath for about thirty seconds but he didn’t even cry. I talked to his ped about the vomiting and the low grade fever but he didn’t seem too concerned. With A I have learned how difficult it is to get answers on him. I asked him for a prescription for Zantac to add in to possibly help with the reflux a bit more. I really am starting to go crazy with all of the throwing up. The dry heaves and gagging is also taking its toll on me. It is so hard to deal with! I can’t even imagine how A feels when he is the one doing this all of the time. So we will be going back in a month to tell him if there is any difference with the Zantac. I am not too hopeful as it is only an H2 Blocker, but maybe it will give a little more relief. I know that the stuff he has been throwing up for the past month is very acidic because of the smell of it.
Anyhow today was kind of a crazy day on the Internet. There is a lot of talk still going on about what I discussed yesterday. However it has more or less turned into “would you change your child with special needs?” WOW what a debate that has caused! I was reading a blog that I do daily and it was saying basically how people are crazy if they say they wouldn’t change their premature babies life. Then it went on to saying how she hears parents of special needs children say that they wouldn’t change a thing, and she couldn’t understand that.
So I felt that I had to comment. I basically said that I was one of those moms who said that and I meant it. I said that A is who he is and if he were any different than he is now then I wouldn’t be the mom that I am and he wouldn’t be the child that he is.
I went back a while later and there was a comment back saying that she wasn’t disrespecting anyone but she just didn’t get it. Then it said that if I was comfortable watching A in pain then she was happy for me! I couldn’t believe it! I NEVER said anything about seeing him in pain. I said that I wouldn’t change him. Sure I wish I could take the pain he has away but wouldn’t any mom do that if she could?
Next a lady said she wondered if I would be saying the same thing when A is 21 years old. Give me a break! I think that my acceptance with A and his issues has brought me a lot further than some of these moms have EVER come with their child’s disabilities!
So I decided to post a question on the reflux parent group that I am part of. Of course it was directed at the moms with special needs kids. WOW, it sure has had a lot of comments! I would say it is half and half. Very interesting to me…I don’t think badly of anyone that says that they would change their children, so I don’t think it is fair to people to jump all over me about saying that I wouldn’t change a thing.
You know having A at 24 weeks, spending 227 days in the NICU, being in the PICU, finding out he has cerebral palsy, finding out that he is deaf, finding out that his eyes aren’t the greatest, having him on a feeding tube makes him the little boy that he is. This whole ordeal from June 10th 2005 until now has made me the strong mother that I am. I can’t even begin to tell you how much A has changed my life. How different I am as a person. How I look at life SO SO differently now.
Anyhow I think I have rambled on and on enough. I just get so frustrated with topics like this. How many times do I need to say that having a child with special needs is not a bad thing!??!
I am the luckiest mommy in the world to have this gorgeous, happy little miracle!!
Come morning he was the happy baby he normally is. Grandma was here for 9:30am and she never would have guessed about the night that he had. We took him to the doctors for 10:15am but didn’t get in until about 11am. He was weighed in and was the big 20 pounds! I can hardly believe it! He got his RSV shot and was not a happy camper. I think it bugs me just as much as him. I find it so hard now to watch him go through things like this. Funny when I look back at everything I watched him go through in the NICU and didn’t make me flinch.
I spoke to his doctor about the vomiting and even brought him my list of times and how much was thrown up. He didn’t seem too concerned about it but did say that if he isn’t better by the end of the week to bring him back in. The blood he said is probably from the force of the vomiting and his esophagus is irritated. I however am not convinced that the bile is nothing and have a feeling the tube isn’t correct.
Anyhow we got home around noon and A was asleep at 12:30pm. He didn’t get up until 2:30pm which was perfect timing for Deb his AVT. Grandma left and then I got A all set up in his chair ready for his therapy. Deb noticed right away that Ashton just wasn’t himself. Within minutes he just looked pale and lethargic. He wasn’t interested in any of her toys which he usually loves and didn’t really want to do anything. She got the bubbles out and he was okay for a few minutes (he loves bubbles)and I caught one smile from him while she did this. There is a song that we do with the bubbles and it is pretty low tone so we think he most likely can hear it. It goes, “bubbles,bubbles up up up…bubbles, bubbles pop pop pop.” LOL Here are the pictures of the two of them.
Well the therapy didn’t last long. A threw up again and I was a little more at ease because it was clear mucus. But within minutes up came the bile. Deb even noticed how off colour A goes when he is trying to catch his breath after vomiting. So we decided to call it an end and just sat and talked for a bit. A is supposed to go for another hearing test tomorrow and I just hope that he is well enough to go because he has missed the last two because of being sick. I really don’t want things to be delayed more than they already have been. So fingers are crossed that he has a good night and is well enough to go. Also kind of exciting because daddy doesn’t work tomorrow so it will be his first time coming with us for the cochlear implant process. Joyce will be here shortly then I can head to bed and get a goods night sleep.
So after Deb leaving A wanted to sleep again. I cuddled with him for a bit but he just wanted to lay on his tummy and go to sleep. He slept for a couple of hours and then was up again and back to the vomiting. It wasn’t until after 6pm tonight that I noticed that it looks like there is formula in with the bile. This is very frustrating for me because A shouldn’t have anything in his stomach. And considering that his feeding tube goes right to his intestines this means to me that the tube isn’t placed probably. This angers me considering that I told the doc at Mac that when I saw the tube on the screen it wasn’t right. He changed it and it was only two short hours later that we were back in there with him correcting what he had supposedly already done. Let me tell you if I find out his tube isn’t in the right place I am not going to be happy. And people don’t like when I’m not happy. 🙂
So it has been a long day. In total since midnight A has thrown up 21 times.