Thanksgiving!!!
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.
Andrea.
My inlaws.
My new sister.
My extended family.
My wonderful friends who I do not see enough of!
All in all, an amazing life!!!!!!!!!!!!!!!!!!!!
This Boy Always Has Me On My Toes…
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?!
Two Birthday Wishes!!
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!
A Great Long Weekend!
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…
A and Mady tonight…couldn’t resist!!!
Finally, An Update!
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?!?
Sleeping at grandma and grandpas…so cute!
Fun with Mady…
Cujo & Mady
Been A While!
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
Genetics!
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.
Coming Home Soon?
After set up for the sleep study…
I love how curious he is now!
Cuddles with Vickie…
February 24th…
February 25th with NPT tube…
Well it has been quite a week. I am sorry that I have not posted a recent update but I am just so tired of putting negative things on here. Seems A can never catch a break.
So the NPT tube that he had put in on Monday came out Tuesday morning. It didn’t help him at all and if anything it made him worse. The doctor wanted to leave it in until the afternoon (probably so he could see for himself that it wasn’t working) but I told him that if he didn’t get an RT in to take it out then I was taking it out. The RT was there within about ten minutes. He told me that if it was helping that I would definitely see the change. He said it is pretty amazing when it does work because the kids go from desatting to nothing. No such luck for A.
Wednesday I didn’t see ONE doctor all day. I did take some time out for myself because A had one of his favorite nurses on. So I took the streetcar down to a huge scrapbooking store to get some things for my wedding invitations that I will be making. It was nice to get away and do something that I wanted to do.
Thursday. Big team meeting. I have to tell you it was probably one of the hardest meetings that I have been to. There is nothing like walking into a room full of people staring at you and talking about your child. So the plan right now is that we are going to try the botox in his saliva glands. Because this has to be done under sedation I asked if they would do a CT scan of his chest at the same time. They said they would but warned me that it probably wasn’t going to give them clear answers and if anything it would probably complicate things. They also told me that one CT scan equals about 250 x-rays so to think about the radiation.
There was talk of sewing up his vocal cords so that he can’t pool secretions in his airway and of course the trach but all the docs there agreed that this would not be the next step. Those are life changing decisions that no one is comfortable making right now.
Long story short, the doctors really don’t feel that there is going to be an answer for A. And like they said, they can keep doing test after test after test but as they go it just gets more invasive and unfair to A. They were pretty positive that if there was an easy answer for what he is doing they would have found it. I am really starting to believe that.
Things got pretty emotional near the end when we had talked about everything. They said that they think we need to get A home within two weeks and let him live his life here instead of in the hospital. No one said anything in too many words, but I don’t think anyone in that room thinks that A is going to be around for a long time. Just the words they were using and the looks on their faces. This is REALLY tough for me to swallow. I don’t know what I would do without A. He is everything to me and I don’t want to be planning his funeral anytime soon. The thought of not having him here brings me to tears. It makes me feel SO angry inside. I know I shouldn’t think negative but it is hard not to. I am pretty good at reading people and this is what I felt at the meeting. I came home last night because I have some things to do here for the wedding and I just wanted to go back after an hour of being here. Just looking at his toys makes me cry. I can’t even go in his room without crying so his bedroom door is closed.
Finally….A Good Day!
Well I have to say (without jinxing anything!) that A has been VERY good the past two days, including today. I went home on Friday night (only the third time in almost 7 weeks) as I had to go and get my wedding dress! I could not keep putting it off as it can take up to 8 months to get in and I only have under 6 months left! The owner of the store though said she would work miracles for me. So before heading home for the night I had requested a certain nurse for the night and then the one for the day yesterday. This was the ONLY way that I was leaving as I knew that they would take great care of him.
Friday night Aunt K and Grandma S came up so that they were able to come along with Aunt Shorty, Grandma C and I. I did end up getting the same dress that I had first tried on in October. I absolutely know that it is MY dress and can’t wait for the day that I get to wear it and walk down the aisle.
Saturday my heart went to my feet because I got a call from the hospital in the morning. It was the doctor that is on for the weekend for complex care. He was asking me about the NPT tube (nasal trumpet) that we had discussed on Friday. Before I left Friday night I told them that I wanted to be here if they were to do it because I felt that I would be the best judge on whether or not it was working. Anyhow he wanted to know if it was okay to put one in if he felt A needed it. So I told him exactly what I told them Friday night. Well he then said “well you aren’t here 24/7 to judge it anyways.” Now I have to say that I wish I had of responded, however I think I was so shocked by what he said that by the time I would have he was already talking again. I should have said, “listen buddy, I AM there 24/7…this is the third time that I have been home in almost 7 weeks. How many weekends have A and I spent just hanging out and then the ONE weekend that you guys want to move your asses and do something I am at home?!?!??!” Oh I was just so angry!
Anyways, A never had to have the nasal trumpet placed and he had a wonderful day yesterday while I was out. Daddy and I got here last night about 10pm and gave him a bath before he went to bed. We then headed over to the hotel for the night. Today was a GREAT day for him and he was VERY happy and seemed like he was back to his old self. I just don’t want to get to excited as we all know how A doesn’t play by the rules. He also came off oxygen today at noon and is STILL off. This past hour he has been desatting quite a bit so we will see, but so far so good. I am MUCH better with seeing 70-80s then I am seeing single digits or 20s! He only had two big desats today and those were both with crying.
Well I am off to bed…everyone keep those prayers coming!!!
A Busy, Busy Week!!!
Well it has been a week since my last post! Friday daddy headed up North to grandma and grandpas cabin in the woods. He went up with Uncle S and Acton until Monday night when they returned home.
Aunt K came down on Saturday to spend the weekend with A and I and we went dress shopping on Saturday. After two hours of trying on dresses I found THE dress! I was so excited and can’t wait until the day that I get to wear it. I can see how emotional the day is going to be already considering that I almost started balling when I came out of the change room and saw myself in the mirror.
Saturday night the three of us headed to dinner with the “Mac Mommies”. Vickie, Shannon, Lisa and Angela were there and it was great to get together. Of course it was the one weekend when no one was available to watch A so he came as well. He wasn’t the best behaved little boy but we got through dinner anyhow. Next time I will be sure to have a sitter!
Daddy, Uncle S and Acton heading out Friday night…
Grandma and grandpa went north on Saturday morning to make some plans for the cottage that they are building and to clear some more bush…
Knocking over trees…
Acton with the ONLY fish that was caught the entire fishing trip!
Uncle S at the dam by the cabin…
Daddy…
Packing up to come home…
Last night A and I carved his first pumpkin. He really didn’t know what to think of it at first but as I was cutting it he was laughing hysterically.
Then mommy made him feel the inside of the pumpkin and as you can see he was NOT happy.
Right after I took that picture he started to gag and threw up. Guess he didn’t like the mush of the pumpkin!
He liked the finished product!
Today I dressed A up and took him to get his pictures done at Zehrs for Halloween. When daddy got home we took him over to have a quick visit with his friends O & A and then grandma and grandpas…
That’s the cutest little devil that I have ever seen!
My Little Man Is Getting BIG!
Well it has been a crazy few days here! I haven’t blogged in a while so I have a bit to update on. First, still no luck yet with getting A covered for RSV season this year. I have a couple of calls to make today that will hopefully get me somewhere.
Thursday night was a nightmare here as A once again had a pretty rough night. I am not too sure what is wrong with him when he does this, but he is VERY fussy and just not comfortable. I really can’t wait for this sleep study! I think he might have had an upset tummy because his tube site was bleeding and Thursday night before going to bed he had been vomiting a lot of formula. At one point it looked like a whole entire can. I diluted his feed for about 24hours when he was acting better and had not been vomiting. But thankfully it never turned into anything more and he is fine!
Saturday grandma and grandpa S came down to spend the weekend. They got here just after noon and we headed over to Uncle S and Andrea’s house for their housewarming. A was pretty tired but had a hard time sleeping as there was way too much going on.
After leaving there we all headed over to grandma and grandpa C’s for dinner. We had our “wedding talk” and have some plans in place. Now I just need to get my butt in gear and start making deposits and reservations! I can’t believe how fast time is going and cannot wait until the day that I get to walk down the aisle!
Sunday, A went to the Storm game with daddy and grandpa and grandma S and I headed to Kitchener to the wedding show. I was glad that I went because I found an awesome photographer, a fabulous cake decorator and even got some great ideas for things that I want to do!
At the game…
We got back around dinner time and then we all headed out to eat at Shoeless Joe’s. Grandpa and grandma S then headed back home and we came home to head to bed. A had other plans last night and decided he wanted to stay up until 11pm! I am happy to say that I only got up ONCE with him last night and I actually had to wake him up this morning for physio and OT.
I couldn’t resist these pictures before waking him up!
So we started the breathing treatments with the nebulizer for A on Friday night and they are going well. The first time that he had one he was pouting and didn’t know what to think. This morning he actually didn’t need me to sit and hold it for him and he just watched the TV. I can’t say that I really notice a difference with the treatments yet compared to the puffers, but I do know that he is getting more of the meds this way than the other.
This morning A had Monique and Shelly here to work with him and he did VERY well!! Check out these amazing pictures!
After physio and OT A had his nutritionist here along with his speech therapist. Yes it has been a crazy house already and we still have his auditory speech therapist this afternoon!
Anyways, A now weighs a whopping 24lbs 1oz!!! That means he has gained 22 pounds and 8 ounces since he was born! That also means he went from 710 grams to 10,931.58 grams! WOW! She also measured him today and he is 80cm which is 31.5 inches. At birth he was 10.5 inches or 26.67 cms!
His speech therapist David and I decided we are going to wait on the feeding study to decide when he will be coming back.
RSV Season Is Almost Upon Us!
Am I ever happy that A’s nurse was here last night! He had a pretty rough night with vomiting bile, a nose full of boogers and just plain irritability! I did hear him at 2am at which point he was up until about 3am. Then from 5am until 7:40am she had to sit in his rocking chair and hold him. By the time she left at 8am he was back asleep so I decided to cancel his physio for today that he was to have at 10am. Good thing I did because he didn’t get up until about 10:15am. He actually doesn’t seem to be that bad right now except for sounding a bit congested. This whole thing brought me to thinking about the RSV shots that he has received for the last two years. I really didn’t think he would qualify this year as he isn’t on oxygen anymore and he hasn’t been hospitalized with pneumonia or anything of the sort. I called his doctor this morning and he is on the list! This is awesome news and can help me relax a little bit!
On Saturday I took A with me to go and meet a photographer that Lisa had recommended to me. I was FINALLY able to walk away knowing that this IS the one that I want there on my wedding day! Her work is absolutely amazing and there isn’t a doubt in my mind that I won’t be extremely happy having her do our pictures. So thanks Lisa for helping me make one of the biggest decisions for my day!
Saturday night we all just settled in and watched a movie. Or should I say tried. LOL A is constantly wanting to go and doesn’t just sit on my lap anymore when I want him to. The happiest place for him is the floor! He loves the freedom of being able to move around and not have any boundaries. However with his feeding tube this is difficult at times to do!
Here he is being the little monkey that he is…
Yesterday was a typical Sunday around here. Just hanging out and not doing much of anything!
Still no word on the MRI from London. I called there on Friday and got ahold of the secretary and she told me that he was in a meeting until 4pm (when they close) but that she would have him call me. Nothing. And still nothing from he respirologist at Mac either.
Playdate, Bridal Show & 2 Month Hearing Age!
Well the weekend is at the end and I am exhausted! On Friday I took A to Olivia & Avery’s for a long overdue playdate. The girls are doing amazing and I was very impressed with how well they were speaking and behaving! I have some pictures but for some reason blogger is not working properly to post pics so they will have to wait until it is up and running again!
Friday night I also went and met with a husband and wife photographer team. I really liked their work and the fact that there would be two people doing photos. I cannot believe how many photographers there are around and I don’t know how anyone can make a final decision on who they would like there!
Today I went to a bridal show here in Guelph with my mom and cousin Nicole. I was pretty impressed with what I saw and I think that it helped me make a few more decisions for the big day. I am pretty sure I have decided on a photographer and I know one place that I WON’T be getting a cake from. haha it wasn’t very good. Being there really made it FEEL more real and I can’t wait until the day is here!
It was two months ago today that A had his implant activated. Wow I cannot believe how fast time goes. He has done amazing with the implant so far and I am so happy that I made the decision to have the surgery and give him such a precious gift. Things I have noticed already with the implant are:
1. Turns to toys when they are activated.
2. Recognition of my voice and his daddy’s.
3. Acting scared of certain toys/noises.
4. Anticipation of the implant being turned on in the morning.
5. Knows his train, knocking on the door, popping sound with your mouth, clicking of the tongue, the dog barking and a couple other SPECIFIC toys.
6. Much more vocal at times.
7. Taking turns making sounds.
What I am currently working on with him:
1. Name calling to learn “A”
2. Having two animals in front of him, making the sound for one and have him look at the correct one.
3. Excitement to new sounds.
4. Of course mamamama…hasn’t worked YET!
So in the two months you can see how well he has done. That’s my boy. My amazing little boy.
A Day At The CNE In Toronto!
It has been a VERY busy few days around this place! Tina came down on Thursday night from Windsor to come with me to look at three different places for the wedding. We looked at two on Friday and one on Saturday and I think I have my mind made up on which place I would like it. It was so exciting to go into these places that were set up for weddings and knowing that one day it will be my wedding! It was so nice to have another opinion so thanks Tina for coming down!!!! It is very greatly appreciated! And thanks Shelly for coming to watch A for the day on Friday so that we were able to get things done!
The one place that we went to was the Pines in Cambridge. It was absolutely gorgeous, but the lady that I was supposed to meet with didn’t show up! I was very disappointed because she wasn’t very nice on the phone and therefore I had said that she would really have to step it up at the viewing. Well no show means no go for me! It is too bad too because it was soooo nice. I would have been pretty upset had that been my wedding set up and there are people walking around inside unattended. After about fifteen minutes of wandering around with no one to be seen we found the chef in the kitchen. He helped us a bit but it didn’t make up for the owner not showing.
Yesterday was definitely a lazy Sunday. Everyone needs those once and a while though. Today made up for that. We decided to take A to the CNE in Toronto. I was really looking forward to the air show however we were stuck in traffic for a LONG time to get to the parking lot. We left at 12:30pm and didn’t get out of the car at the Ex until 2:30pm. Our friends Shawn and Karen came with us along with their kids Payton and Riley. We got to see the planes but not from very close up. It was so loud and really something to see! I was surprised that A was okay with the noise but he did look a bit confused. The rides were pretty noisy and the first one we stopped by A was pretty scared and pouting.
It ended up being a VERY hot day and not really expected. It was almost too hot to be walking around for that long but A did well. However he did have tons of vomiting which I think was due to the heat and the sun. But as you can tell by the pictures he was still pretty happy.
This picture was from the other night but it was very cute how he was copying sticking out his tongue…
A on the merry go round! He wasn’t too sure what to think at first when it started moving but he did well.
Payton and Riley driving…
The snowbirds…
I wish I knew what he was thinking sometimes…
J took Payton on the graviton. She had never been on rides before but didn’t have any problems getting onto them!
Already Feeling Overwhelmed With Wedding Plans & Meeting Darcy Tucker!
Well it has been a crazy week around here! A’s tube that he had placed in London just does not want to stay in the spot that they marked it and it is driving me crazy! He has had a lot of vomiting of thick mucus and a couple of times he had projectile bile. Really gross stuff and frustrating when I don’t know why. I can only assume that his gut is irritated from having the new tube placed.
Wedding plans! AHHH I feel like I don’t have enough time to do everything and it is still so far away. The date is set and I have three places that I am looking at next week. My mom and I are also going to a bridal show in September so hopefully I will be able to book the DJ and the photographer then. I am SO excited about this day and I can’t believe still that it is going to happen! J and I have also picked out where we would like to go on our honeymoon so that is just one less thing to worry about. This day has to be absolutely perfect and I know with everyone involved that it will be just that!
So A has been impressing me this week with yet something else that is new. He now will sit in his swing and look at his feet! There was also one night that he was actually trying to get them and it was so obvious my the determination in his face! I was almost jumping up and down as this is a HUGE step if he was to start touching his own feet! I couldn’t catch a picture of it, but here he is in the swing…
Monique his physiotherapist was here the other day and she just cannot believe how well he has done over the summer. He is getting so much stronger with pulling his head forward, holding his head up, standing nicely, sitting nicely (supported) and just everything! She also told me that I am in the 1% of parents that she sees that are totally into their kids, advocating for what I believe is right and the knowledge that I have. So that was a very nice comment from her. I guess it just isn’t something that they see all of the time.
So today I took A to meet Darcy Tucker at the Future Shop that just opened here. For those of you who don’t know who he is, he plays for the Toronto Maple Leafs. I had also written him a letter and wasn’t sure that they would take it, but they did. My mom told him that it was a very special letter from Ashton and he smiled and said okay. We stood in line from about 10:45am until 1:30pm to meet him. It was raining when we first arrived but then it cleared up which was good.
Waiting patiently with grandma…
Smiling at grandpa…
Still waiting patiently, but almost there!
Getting tired…
The line moved quickly because he was just signing his name…no pictures with him or anything specific being written…
Looking at A…
Signing A’s hockey stick…
Grandma telling him about the letter…
Grandpa getting another stick for me signed…(my letter is under the sunglasses!)
He Makes Us Believe.... 