Well since it was just Thanksgiving weekend I thought I would do a post on what I have to be thankful for this year.
First, my husband! YES, I can finally say “husband”! He is amazing and would do anything for me and anything for A. He tells me AT LEAST once a day (and everyday-no joke) how beautiful I am and how much he loves me. He understands that although my life seems to revolve around just A that I love him just as much as he loves me. A relationship will always change when you bring a child into this world. A relationship changes even more when you bring a preemie into this world. And it changes even more when you bring a special needs child into the equation. But throughout our ordeal and A’s approximate 371 days in hospital we have held on. We have overcome SO much that many probably would not have been able to. Did you know the divorce rate for families that have special needs children is about 85%? But instead of not being able to work things out we did the opposite and got married!!!! Sunday August 17th 2008….one of the greatest days of my life!
A. WOW what this child has brought into my life is just amazing! He has been a fighter his entire life and that has not changed. He struggles with things every single day. He endures many painful, uncomfortable procedures but yet he still smiles. He is SO happy that I sometimes forget how hard life is for him. A is the most determined child that I know. He definitely knows what he wants and he is always trying to GET what he wants. Or DO what he wants.
I know that we all don’t know what life holds for my little man, but one thing is for sure….he enjoys life every single day! It is very hard for me to think of the future and not get worried and scared but his smiles, his love, JUST HIM take those fears away most days.
My family. My parents are amazing. They have done everything and anything for me. They have always supported me 100% and believed in me.
My brother and sister.
My new sister.
My extended family.
My wonderful friends who I do not see enough of!
All in all, an amazing life!!!!!!!!!!!!!!!!!!!!
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 we have entered June. A crazy month in this household for sure! SO much happening and SO much to look forward to! In 8 short days my little boy will be turning three years old! I can hardly believe it!
I have my FIRST dress fitting next week along with a trip to Toronto Sick Kids for A’s eyes and a trip to Waterloo to finally see Dr.Wiggins who we have been waiting almost a year to see!
We went to grandma and grandpa’s yesterday for a barbecue to celebrate grandpas birthday which is actually today. A was a show off and rolled over for everyone there to see it!
So my first birthday wish is to grandpa C, my dad, my friend, my hero.
He is an absolutely incredible man and one that I wouldn’t trade for the world. He has been there for me through SO much and I am so lucky to be able to call him My Dad. I can’t stop thinking about my wedding and having him walk me down the aisle. It is something I have dreamt of since I was a little girl and it is going to be so great to finally have this one dream come true! I can pretty much guarantee that it is going to be ONE of the hardest things in my life to get through without tears. Well actually I am pretty sure I won’t get through it without tears. LOL
So happy birthday Grandpa! We all love you!
And some pictures from yesterday…
Mady and her friend Sadie…
My sister and her new man…
My dad trying to read his birthday cards…
My brother and soon to be sister in law….congrats guys!
And the next birthday wish is for grandpa S who celebrates his day tomorrow! He is also an incredible man, who very shortly is going to be my father-in-law! And honestly, I don’t think I could have a better father-in-law than the one he IS! And I have to say that I am looking very forward to his speech that he has written for his favorite daughter in law! LOL We all love you!
Saturday night we headed to Chatham to grandma and grandpas after daddy was done work. The weather wasn’t the greatest but we still had a great time! Aunt K came down Saturday as well so it was nice to spend a couple of days with her.
Sunday Tina came down too so that we could get things in order for our stag and doe. Within a couple of hours we had everything figured out that we wanted to do and hopefully it is going to be a great time!
After doing the planning we decided to have a girls night out at the bar. A couple of K’s friends came with us and it was SO much fun! Lets just say that when we got to the bar I wasn’t to thrilled because they had a tribute band for KISS there and I am not a KISS fan at all. Well, I LOVE Gene Simmons (his show/family) but don’t like the music. After a bit it wasn’t bad and by the end of their time on stage I was up there with them singing!!!! Thanks girls for the night out, it was awesome! (Whoever is coming for our girls weekend is in for a REALLY great time!! LOL) And thanks to grandma for taking over A duty. We didn’t get home until 4am but luckily I felt fine on Monday.
Enjoying some time outside…hahaha gotta love the hair!!!
Cuddling with aunt K…
Wow, it has been a while since I have updated this blog!!! No wonder I have been getting the odd email asking how things are going. Well, things are actually going VERY VERY well!!!! A has still not had any vomiting issues and I don’t think I recall much gagging either. His feeds have changed dramatically since getting the g tube and it seems to have really helped. He was getting feeds every four hours in the day and then nothing from 11pm-9am but now we are on continuous from 10:30pm-8:30am. He then gets a feed from 11am-1pm and 6pm-8pm. And knock on wood this is helping big time! I am slowly going to try to increase the amount to take time off but I am sure going to do whatever works for him.
Things have been totally crazy around here trying to do wedding planning and getting things in order. Time is going so quickly and I am so worried that something isn’t going to get done! I have been hard at work making all of my own invitations and reply cards and WOW is it sure a lot of work! I didn’t realize how much work is put into a wedding until I started planning my own!
Today the pastor came over that will be performing our wedding ceremony and he was great. J and I will start marriage counselling the end of May which will consist of four one hour slots. I had to laugh to myself kind of when this came up because God knows that if we have made it through what we have then we sure will be fine!!! I don’t know how many people that have a child with A’s needs, hospital stays and issues would survive. I actually have to sit back sometimes and realize how proud of ourselves we should be. And to think that after three of the hardest years of our lives we are more in love than we were before A! This wedding is going to be VERY emotional and I am getting so excited for the big day!!!!
Anyhow, back to A. He has also been satting pretty well at night still, above 90 which is okay with me. He still does drop but is not requiring oxygen since the last bit where he did. He however has a new thing that he does which is dropping his heart rate too low. The nurse was here last night and said he did it 27 times. I even know during his nap he does it and I have NO idea why. Most of the times when it happens he is satting at numbers you typically don’t see with him! LOL If it isn’t one thing, it is another with him. I am a bit concerned as I know this is new for him but he does pop right back up so I feel much better with that.
Lately, J and I have been having a hard time dealing with how upset A is getting. Last night was pretty rough because he was SO fussy and all he wants to do is stand up. He loves when you hold him up and he can walk around. His eyes light up and he is SO proud of himself. After long periods of time we need to take a break because he is so heavy and he gets very upset. He just wants to go. I almost started to cry last night because he knows what he wants to do but yet he can’t do it. He is really changing in this way with everything around him. Even toys, he tries SO SO SO hard to get things and when he can’t he gets very upset and frustrated. It is wonderful that he is trying so hard, but it is becoming apparent to J and I just which way things in life are headed for A. As he gets older it is much harder to please him and he just wants to keep on going. Lately I have been walking him for up to two hours a day because he just doesn’t want to do what he used to do. He loves being outside so I do it to make him happy.
On a good note, I received a call the other day from a doctor that I have been waiting to see since last August. He is an eye doctor and he is supposed to be VERY good at what he does. They actually have two weeks out of the year where families from all over the world bring their children to see him. He has students that interact with the kids and then after an hour of observation he is supposed to be able to tell you what they see, how they see it and overall what their vision is like. I am very excited because lately I find putting on A’s glasses that he doesn’t want them on. The appointment isn’t until June but it should be interesting!!
Speaking of June. WOW, we are already in May. My little man is going to be THREE next month!!!!!!!!!!!!!!!!!!! YIKES, where does the time go?!?
Well we are still in hospital. Last week went pretty slow with not much happening around here. Beginning to become a regular thing. The good news is that we got a new chest team that started on Wednesday and I really really like the lady that I am dealing with. She LISTENS to me and FEELS my concerns. These are definitely hard to come by around here so this is great. She had asked me why an echo hasn’t been done yet and I explained that the last team said that it wasn’t cardiac related. She then went on to tell me that she is concerned about heart failure because of all of the low desats he has been having and with what is going on. I agreed with her that if she felt it was necessary to do the echo then I was all for it. She put in the order.
Thursday comes around and I was speaking to the complex care team. I asked about the echo and they told me that they had talked to chest and that the chest team didn’t realize that A had just had one done in November that was fine. He then told me that they were satisfied with the results therefore would not be wanting a new one.
Thursday IGT also came in to speak with me about the botox that they wanted Ashton to have. It was then when I found out that there are many risks with the botox. After discussing it thoroughly with the doctor I was comfortable with going ahead and signed the forms for it to be done on Friday morning at 9am.
Well, later that day I was not feeling so great about it. My gut was just not right with the idea. And when I have that feeling I know that I need to listen to it! So at 4pm I talked to his NP and told her that I was cancelling it. Well to make a long story short, they were not too impressed. But guess what? I don’t give two shits! I then went on to tell her that I wanted to try him on the med first that does the same thing as botox. This was the med that they told me about a week ago that they didn’t want to try because it can thicken secretions. Well I figured after asking many moms about it to give it a shot. Who knows, it could work. So he was started on that at a low dose and we will probably have to increase it tomorrow as I don’t notice any change yet.
Friday. A HORRIBLE day! Chest doctor was here and asked why the echo had not been ordered. I said that I talked to complex yesterday and they told me that you were satisfied because of A’s echo in November. Boy was she angry!! She told me that she never said that and has placed it in the notes three times that she wants one done!!! She then opened to the last note she had wrote and asked if he knew how to read?! LOL I told her that she needed to talk to him because I was tired of always getting different answers from different doctors. Kind of crazy if you ask me! Things like this just should NOT be happening!!!!!
Then around 2pm I went to lay him down for his nap. Well he was NOT doing well. He started into one of his fits and it lasted almost an hour. Thank goodness that his favorite nurse was on and she is so wonderful with him. I was getting VERY emotional. I am just so tired of seeing him so blue so often. I left to go to the washroom quick and when I was coming back I saw his NP. I told her that I wanted a probe done because I think he is still having issues with reflux and that I was tired of them sitting around not doing anything when A is obviously struggling! She said we could talk as a team on Monday to see if the probe was necessary. I told her that it was because either way I wanted to know IF he was refluxing still. I mean it is obvious that the fundo is working but he has not had a g tube in two years so it IS possible that he just cannot handle g tube feeds.
I went home on Friday night because Aunt K and Grandma S were coming down so that we could go and get Kelly’s dress for the wedding on Saturday. I really did not want to leave but felt comfortable knowing he was well taken care of with Jordana.
Saturday went well for dress shopping and now just two left to get. We drove down here on Saturday in the nasty nasty snow but luckily we got here before the worst of it came.
Today is A’s 8 month hearing age!!! And to top this post off with the best news yet…..the complex care team is switching over tomorrow!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am ecstatic! Can you tell? LOL
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.