Oh where do I begin?! Well we have been home now for about five weeks and I have to say that things are going AWESOME! I really don’t know why I was so afraid of the “trach talk” way back when, but really it should have been a LONG time ago. And by a long time ago, I mean before A even came home from the NICU.
It breaks my heart to think that for four and a half years he has basically been suffering in silence. Unable to tell us that he cannot breathe right. Unable to tell us that his sleep was so crappy and he was up so many times a night because he would wake up needing air. The sad part is, is that all of this was KNOWN to the hospital where we spent 88 days back in 2008. They knew his sleep was horrible. The sleep study showed that he obstructed every five minutes. But yet they didn’t feel the need to tell me this as his mother? Instead I was told that “it wasn’t that bad.” I would hate to see then what they would consider BAD.
Feeds are going pretty good. I now have him up to a mixture of half and half with the two formulas, which gives him 37.5 calories per ounce. However he is still sitting at about 25lbs which is not really where we would like to see him. Weight is something that he definitely needs to gain! The hope is that now that he is not using so many calories to breathe that he will start gaining more. We are also only giving about 1200cals per day which his doctor feels is enough. So we will se and maybe have to up him a bit if he doesn’t start gaining something soon.
SLEEP. WOW WOW WOW is all I have to say. This child SLEEPS! I cannot believe the difference that the trach has made with just this alone. Do you know how odd it is to put your child to bed and he goes to sleep within about ten minutes? Do you know how odd it is to not be going up and down stairs fifty times before you even get to bed yourself? Do you know how odd it is to peak in at your child and they are satting about 95 CONSISTENTLY? Do you know how odd it is to not listen to his alarm go off pretty much ALL night? This is ALL so very odd to me!!!! For four and a half years I have been constantly getting out of bed. Constantly silencing his saturation alarm. Constantly trying to console him to go back to sleep. And now I do basically NOTHING. My little man can finally SLEEP. Finally get a good rest. Just flippin amazing!
Feeds. They are going okay. It is so weird after feeding A for his whole life during the night to be doing NO feeds and night and just feeds in the day. Right now I have him up to a rate of 155mls for a total of 230mls per feed. And he gets four in total.
Reflux. He seems to be doing okay reflux wise. He is down to 30mg/day of prevacid from 45mg.
Daytime. Everyone asks me if he seems better in the day since he is getting such a goods night sleep. And I have to say no. But this is only because A has always been such a happy wonderful kid. I used to wonder where he got all of his energy from when he slept so crappy at night! And to this day I cannot answer this.
Mommy and daddy. We are better than EVER. I feel like since coming home that I have a brand new son and a brand new husband. J has been helping out more than ever and it is so greatly appreciated. We had a long talk shortly after A came home and he told me that he realized after all that just went on with A of how close we were to possibly losing him. And now with the trach it is a whole new world for us. I never thought I could love J more than I did, but another WOW! Life is just awesome now!!!
A also had biopsies done on January 18th for the mito/metabolic issues. We will not be going back until the 20th of April for the results. My heart is kind of heavy knowing that we are so close to maybe discovering what could be going on with A. I am VERY scared but I try not to focus on it to much and just live each day with him as if it is our last. Life is too short to worry about things that may come up and even things that do come up are not always the “worst” thing that could happen.
I think I am scared too because J and I have been talking about having another baby. Well trying to anyways. And to be honest I would do ANYTHING to have another child. A healthy child. I think it would be so good for all three of us. But I know that I have to wait until we find out the results from the biopsies and go forward from there.
February 7th A got to skate with the Toronto Maple Leafs! Here are some pictures!
A also made the Leaf website on video from the skate. Go here and watch at about 38 seconds to see him being pushed by Bosak.
In other family news, my brother Shaun and his wife (my sister in law) Andrea were on the TV the other night. Andrea has been dealing with heart failure and in October of last year her life was being measured in hours. It was at this point that she had an LVAD placed (a mechanical heart) to keep her alive. She has been on the transplant list now for over 100 days and we all pray she will get it soon!
Please go and watch this. Just go HEREand on the right hand side click on the video Hope For Heart.
And today, 17 years ago I lost my Grandma C. I remember it like yesterday. One of the worst times of my life. I still get emotional when I think about her. I just wish she could have stayed to meet A and just be the wonderful part of my life growing up that she always was. RIP Grandma, I love you SOOOO much!
So it sure doesn’t feel like we are only 39 days away from Christmas. The weather this weekend was just gorgeous which was nice so that I could have A outside in his walker! I decided on Saturday to be brave and try to walk to the corner store. It is about a five minute walk normally, however it took A and I just over an hour to get there and back. Talk about a lot of work for him! It was really cute when we got to the corner because he KNEW where we were going and got SO excited. He was jumping and babbling away.
On the way back he was pretty much complaining the whole time. He knew that we were headed home and this is NOT where he wants to come when we are outside. I swear, this kid could live outside!
When we got inside he was SO soaking wet from all his hard work that he had to have a bath. I told him how proud I was of him and that it was a lot of hard work for him. He still wasn’t impressed to be inside.
On another note, I get a lot of people asking me why A goes to bed so late. He is usually in bed between 11:30pm and midnight. Sometimes a little after midnight. I have never really cared as J and I are both night people and I don’t see the point in putting a kid to bed when they aren’t tired.
Anyways, Friday was a long day for A. He was up early and then had all that excercise that is new to him. J and I had gone out for a bit Friday night and at one stop at a friend of his, we were out of the vehicle for about fifteen minutes. I looked in and guess who is sleeping? Yep, Mr.A. I couldn’t believe it. It was only 8pm and he NEVER falls asleep in the vehicle, let alone that early! As soon as we got back in to drive home he was awake. J did his breathing treatment at about 9:30pm and A fell asleep during that. Now there are a handful of times that this has happened during his treatment, however it is never at 9:30pm.
After his treatment was done, I changed his diaper, got him in his pajamas and took him up to bed. All of this without waking up. Very strange! So of course with J and I being night people, we didn’t go to bed until about midnight as usual.
Guess what time this little monkey was up?! 5am! YIKES. I left him in bed until 6am when he really started to complain. It was still dark out and I just couldn’t believe he was ready to go for the day. I brought him into my bed as daddy was leaving for work and just wanted another hours of sleep. A never comes to our bed so he thought it was just great. He was babbling away. Every time I opened my eyes he would laugh and get excited.
About 7:30am his feed was done so I got up and went to clean out the bag and when I went back up to get him, this is what I found.
I didn’t even bother going back to bed because when I normally do, he is up shortly after. Well he decided he wasn’t going to get up until 1pm!!! So, needless to say, this child will NEVER go to bed EVER again before 10pm! haha
Yesterday we had another great day. A was in a SUPER mood which was really nice for both J and I. We were going to take him to the parade but by the time we really were ready for the day it was too late so we decided instead to just have a family day. We put up our Christmas tree, however today is the day that A and I will decorate it. He just LOVES his Christmas tree. He was babbling away as I pulled it out of the box and was putting it together.
Last night we headed over to grandma and grandpa Cs house for dinner. Auntie A and Uncle S came too so that was nice. The last time we saw them they were still in Toronto General.
I took A’s walker over there so grandma and I took him for a little walk. He was having a hard time yesterday, but I think its because the road is bumpy so he can’t get that push. I KNOW in my heart that this is something that he will definitely get the hang of. I got word however that Kidwalk is redesigning their walker and the new one will be out in the beginning of 2010 so we will probably wait to see what they change about it. We will also be trying another walker next, but I don’t know how it will work as it doesn’t have as much support as this one. We will see, I never say never with A! He has proven so many people wrong in the past four years of his life, even me so I know that he is going to keep on surprising us with what he is able to do in life!
Keep up all the great work A, mommy is SOOOO proud of you!
Well another week has come to an end with no therapies or care workers for A. I have to say that I am quite enjoying it! Not getting A up out of bed in the morning so he is ready for them. Not having to rush out the door to get somewhere on time. Just being able to live life “normally” and do as we please.
We still have ten days until A gets his second dose of H1N1 so we are still pretty much in “hibernation” as to not expose him to any of those sick people who still think it is okay to go out into public places and pass on their germs.
Sunday we went down to Toronto to visit with Auntie A. We had not seen her since two days after her LVAD was placed. When we walked up the street to the hospital, she was sitting outside with Uncle S and grandma and grandpa C. She looked MUCH better than the last time that I had seen her. Every time she looks better. We walked around the hospital with her, which by the way is a fair distance for somebody who has just gone through what she has!
Grandma and grandpa C left and then we headed to go have dinner at Swiss Chalet. It was just across the street, so not too far. It is pretty scary leaving the “safety zone” of the hospital with all the gear that Auntie A now has. Uncle S also has a backpack that he wears with spare batteries for the LVAD if needed.
Monday A and I headed to Waterloo to see the amazing Dr. Wiggins again. He is an eye specialist that works with special needs kids. I am always super excited to go and see him with A.
So A has kinda confused another doctor. EVERY time that we have gone to see Dr. Wiggins, A’s acuity -sharpness, clarity in vision- he is at 20/200. Now of course with kids like A you cannot get them to read off the chart that we would. So they use these cards that have a picture on the top or the bottom of the card. The cards are grey and have an outline of say a duck on the top or bottom in white. They show them to A quickly and see if he looks in the right place for the picture. Once he stops, they know he is not seeing it.
So, like I was saying, normally he is 20/200 for his vision. The easiest way to explain this vision is that he can see only at 20 feet what a normal person can see at 200 feet. There are some complicated physics and optics to further explain it but this is the bottom line. 20/200 vision in each eye is the definition of legal blindness.
Well Monday he decided to show his acuity at 20/50! So this means that A has almost good enough vision to drive-as per Dr. Wiggins! haha Needless to say I was VERY confused by this. There is no real way to explain it though I guess as A cannot tell us what he is seeing and how. We will see Dr. Wiggins again in six months and see how A does then.
A still does have the problem with only using one eye at a time to see and his right eye really wanders. We spoke about surgery, however like he said, it is really only cosmetic at this point so that other people wouldn’t notice it. Sorry, no surgery for this boy to make him look better “cosmetically!” In my eyes he is perfect the way he is. And honestly I don’t think many even notice his eye wandering. I know even his dad doesn’t see what I am talking about!
Today my little man trialed the Kidwalk Gait Trainer.His PT was not a huge fan of it but I however really would like A to learn to use something like this to give him more freedom and ability to do things on his own. I have to tell you, that he LOVED it despite the fact that there are a few things that would have to be custom done for him to use it properly. I was amazed today looking at him in it, because it isn’t like a stander where you can tilt it back a bit. It is pretty much straight up so he really has to hold his head back. And he did this just fine!!! It has a bouncy mechanism on it so if he jumps he will go up and down. This is absolutely loved as well since this is something he likes to do when you hold him standing up.
After the sales rep and his PT left I decided to take him outside in it to see how he did. Daddy had just pulled in the driveway and as soon as he saw A moving in the walker he said “right on.” I think we both thought we were going to start crying. A was just as happy as could be in it because he definitely knew that HE was doing all of the work. We walked down to the mailbox to get the mail and back. I think this is something that he could really get the hang of and use it for his advantage.
It is supposed to be a gorgeous day tomorrow so we may just be out and about again! By the way, that first picture is when I opened the door to go outside….he was AMAZED. Nothing like seeing the world in a whole new way at 4.5 years old!
As for Auntie A news, she came home tonight! I talked to her not long ago and she was happy to be home. It has been a LONG 39 days for her being in hospital, and WOW what she has been through! Keep up all the prayers for her…she still has a very long road ahead of her but has proved every single day that she is up for the challenge!
We headed to grandma and grandpa S’s Saturday night after daddy got home from work and didn’t end up getting there until after midnight. A had finally passed out about a half hour before getting there and when I took him out of his car seat and put him on the bed inside he didn’t even budge…
Sunday morning…the day of the bridal shower. Daddy went golfing with the guys and A stayed with the girls to open gifts and have fun! (Notice his shirt?)
Liam smiling for the camera…
Aunt Shorty taking a nap with A. He had kind of a rough day on Sunday which put a damper on my day for sure. He has been off for about a week but Sunday he was just NOT happy. A ton of times going off colour and just fussy.
Daddy and I got SO much more great stuff and it was great to have so many people that we care about there to celebrate our upcoming day with us!!!
Wes…an amazing kid!!! I have said it before, but he is what ALL kids need to be like. If everyone was like him then kids like A wouldn’t have to worry about trying to fit into this world because it wouldn’t be an issue. He is SO great with him and the best part of it, is that it doesn’t even matter that A is different!
We came home on Monday night pretty late but the car ride home was good and A was a good boy.
Last night we took A to the fireworks for Canada Day. He was very unhappy and I was ready to pack up and leave because he was so upset and going off colour so much but daddy took him and walked around until it was dark enough for the fireworks. We met up with Shelly who is A’s worker in the summer and her boyfriend Jeremy and their two kids.
As soon as the fireworks came on Ashton was is awe and wouldn’t look away!
Well I feel like things around here are back in order. It seems so crazy for a while after we have been away for a couple of days. A has been doing great and is continuing to roll over. He has been so happy lately and doing so well with his physio and workouts I have him do.
Today was the same old Sunday. Up with A (8:30am woo hoo!), dishes, walk dogs, laundry, formula, playtime. I wish daddy would start getting up to enjoy some of A’s life with me.
So back to our crazy life tomorrow. Monday has never been my favorite day of the week. A has occupational therapy and auditory verbal therapy tomorrow. Grandma usually does Mondays but she won’t be coming until the end of the week this time around.
I am happy to also report that A has been doing well with his change of formula. Tomorrow morning he will be on full nutren junior! I am so excited that I won’t have to sterilize bottles and water anymore! I have been doing the same old routine now for just over a year and it is going to be so strange not having to do it!
Well now for the pictures….
My little man fast asleep in the playpen…
Grandma S, A, Great Aunt Bev and her grandson Liam
Great Aunt Bev’s other grandson Wes joined in….
My smiling boy…
Tonight A and I headed to Waterloo for dinner with Andrea and Uncle S. It was a nice treat to have dinner made for me. Just a few pictures sitting like a big boy on the couch with Uncle S.
Hello everyone, we are home now. I have some pictures from the past few days but I am exhausted so I will be posting them tomorrow. We left around 4pm on Wednesday to head to St.Mary’s. We stayed with J’s Aunt Bev and Uncle Robert. His parents and sister were also there. We didn’t make it to the viewing at 2pm obviously but we did make it there in time to go to the visitation that was from 7-9pm. Wow I could not believe how many people came to the visitation! There were some people that waited two hours in line! Grandma was obviously a very special person to so many people! There were MANY people who knew who A was without asking and we did not know them. It goes to show how much grandma talked about him to everyone and how proud she was.
When the visitation was over they opened the casket for J and I since we were not able to be there earlier. I was a little bit hesitant to see her because in the past I just find that they never look the way that they did when they were alive. But she looked great. It was nice to see her and be able to say goodbye.
A was such a good boy while we were away. Everyone couldn’t believe how good he is and of course happy!
The funeral was on Thursday and the weather was just absolute chaos! J and I had planned to come home after the funeral but we ended up having to spend another night because there was no way that we were taking the chance on driving home in that weather.
Anyhow, the funeral was very nice and it was difficult to watch her casket being carried out by all of the boys in the family, placed into the car and then driving off. Her burial will not be until the spring. I did not realize that they don’t do burials in the winter at all.
So Thursday night there was a bunch of us that all hung out at Jeff’s aunt and uncles where we were staying. It was nice to see everyone because we never get to see anyone from that side of the family. It is kind of sad to say that the only time that we really see any of them is when there is a wedding or a funeral.
Anyhow, I really need to get to bed right now. We had a good couple days visiting considering the circumstances.
We left there today around 2pm and had to stop in Kitchener to get A’s two new moulds done for his hearing aids. (Lisa, I am sorry about our sort of planned play date, but we would not have been able to make it home on Thursday.)
I promise the pictures will be up tomorrow! (I didn’t really get many because I forgot my memory card, so Cindy if you are reading this please email me the pictures that you took!)
A regular Sunday around here. Well actually I guess I shouldn’t really say that. A went to bed last night at 10:30pm and guess what time he got up today? Not until 11:15am!!!! And no, I am not kidding. Two nights in a row of sleeping right through AND sleeping in. He’d have to do this for a week for me to think it was some major breakthrough for him! I woke up just before 8am and changed his feed. I went and laid back in bed thinking that it would only be ten minutes at the most and he would be up. I fell asleep and when I woke up it was 9am. I panicked a little and jumped up to check him. Still sound asleep. I however could not go back to bed as 9am IS sleeping in for me. I checked my email and sat around just waiting and waiting. I didn’t know what to do with him still in bed! LOL
He was a little chatterbox again today. This is something new as well. He is also starting to spit when he does it. He thinks it is funny too which makes it even cuter.
I did some grocery shopping and laundry today. Uncle S and Andrea came over for a while to show us some pictures of their trip that they just got back from very early this morning. Wow, what I would give to go away somewhere like that. They bought A a little tank top with dolphins on it that says Cuba, a necklace for me, a cigar for J and a coconut carved into a face with a cuban cigar and a little straw hat. It’s pretty neat looking.
Here is something you don’t see very often. A picture of me and my little man. I am usually the one taking the pictures therefore I don’t have many of the two of us.
A had me laughing really hard tonight! I put him into his bumbo seat on the couch and he just wanted to stand up, not sit down! He is so hilarious. He tries SOOOO hard to do things and you know exactly what he is wanting to do and just can’t do it. You can see him smiling in the second picture and in the last one he is trying to use his elbows to push himself up…. I love this kid!!!