Sixteen years ago today I lost someone who I loved very much. My grandma C. I really can’t believe that it has been that long. WOW, how time flies. There is hardly a day that goes by where I don’t think about her and how much I miss her. How much I wish she was around me. How much I wish that she could be a great grandma to A. How much I wish I could see her hug him, talk to him, just love him. How much I just wish she was still here, period.
I have yet to understand why we seem to lose the great ones that we love too soon. It just really doesn’t seem fair. And it just totally plain sucks because she was so loving, so caring and such a wonderful grandma. I have SO many great memories about her which I am thankful for.
I really truly believe that even though I cannot see her she is here with us. A definitely has his “friends” that make him smile and giggle and I am sure that she is one of them.
I love you grandma.
It was three years ago today that A came home from McMaster after his ICU stay.
It was two years ago today that he came home from hospital after being admitted for high fever, congestion, vomiting and all that fun stuff.
It was a year ago today that he was still inpatient at Sick Kids dealing with an NPT tube.
And today, well he is recovering from pneumonia!
Hmmmm something about him and the number 23. January 23rds and February 23rds. This explains why 23 is one of my lottery numbers. Not that it has been lucky, but I figure it is significant so I might as well!
Well a year ago today was when A heard for the first time!!!! I cannot believe that a year has gone by already because it feels like yesterday that we were all really excited about getting him “turned on”. The cochlear implant is the best thing that has been done for him yet. I am so amazed at how well he has done and how he hears EVERYTHING!!!! I am still getting him to work on saying mama but it hasn’t happened yet! LOL
Some more exciting news about A. He got his first haircut two days ago!!! Mommy finally gave in and cut it off. Daddy and I did it together and I have to say that I am VERY happy with the results!!! He looks so much older and more like a little man.
That is about all of the exciting news around here. A continues with his episodes at night and continues with turning blue during the day. I happy to say that FINALLY the team at Sick Kids replied to my email that I sent two weeks ago Friday. They are concerned and want to see him in clinic. I emailed them back asking what their thoughts were and what the plan was because I wasn’t going to waste my time going to Toronto so that we could sit there and look at each other. As well I told her that I wanted the date for his next sleep study, ENT followup and genetics.
Now, just needing all you guys to pray again. Auntie A (my brothers fiance) is in ICU right now and is very sick. She was diagnosed about 8-10 weeks ago with cardiomyopathy with a heart function of 20. Well she is now at 17 and is having a tough time. I’ll tell you though, her spirit is AMAZING!!!! She is only 25 years old and needs all the prayers she can get right now. Thanks everyone.
Well things are still good around here. A woke up this morning with a fever and snotty nose with tons of desats. With one dose of Tylenol he was already better but the doctor wanted blood work and to send him for a chest x-ray just to be safe. All looked well. We can cancel the swab for RSV in the morning hopefully because that is just not a nice procedure! With his blood work today he went down to 43 which gave them a run for a bit. It confuses me so much how he can go SO low with crying. I really don’t think that is related to reflux which just adds another piece to his puzzle.
I received some numbers as well from his ph probe that he had last week and it really is interesting to see what they said. It showed that he had 178 episodes of reflux over the 24 hours with the longest episode lasting 23minutes! Overall the percent was 8.4.
Went out tonight for dinner with J’s mom who has been here since Monday. It was nice to get away from here for a bit knowing that he was okay.
So today is the two year anniversary of bringing him home from the NICU! I cannot believe how fast this two years has gone. I remember walking out of there like it was yesterday.
Already half a year has gone by….congratulations little man on accomplishing so much more than they thought you ever would!
I can hardly believe it! Today it is 4 months that A has been hearing. It feels like just yesterday that we were waiting for him to go into surgery. Time just seems to go way too fast sometimes.
So at four months hearing age I can say that A is progressing VERY well. He babbles throughout the day like a typical baby would. He has a lot of “ahhh” sounds and likes to play with the “f” sound as well. A lot of the sounds that he makes though he is using the back of his throat to do them and we need to get him to make the sounds from the front. His auditory therapist says it is common for kids that can’t hear to use the back of their throats to make sounds because then they can feel it as well. We are still working on him turning to his name and sometimes I think he knows and others I think he just looks because he hears us talking.
Almost every morning when I place the magnet on his head and put the band aid on you can tell that he is waiting for me to turn the implant on. And usually when I do he has a big smile.
I find that his attention spans to shows on TV is much longer and you can also tell which shows he really likes which include Elmo, Barney, Backyardigans, The Big Comfy Couch and some silly shows with people that just drive me nuts!
At night now he is so loud that I don’t even really need his monitor on. Funny because at night he isn’t hearing anything but yet it is like he still knows how to use his voice and what exactly he is doing. The screams that come out of this kid are like nothing I have ever heard come from his lungs!
He also has a fear of elevators which he never had in the past. I don’t really know what hearing has to do with this but it is the only thing that I can associate it with.
He also now turns to his feeding pump when it rings. Kinda cute because it shows me that he knows that is where the sound is coming from.
So the new goal made with his therapist last week is to try and make him understand tones in the voice. For example if he is doing something he shouldn’t be and I say “no” she wants a different reaction than he currently gives. If you tell him “no” now he thinks it is funny.
So today is the day that A would have been 2 years old had he of waited until his due date. I still can’t believe how many people ask me if we use his “real” birthday or the birthday he should have had. I mean what sense would it be to celebrate his birthday on a day that means nothing now?
It’s funny too about this whole actual age and corrected age. In the past people would ask how old he was and I would say “well he is 5 months old or 1 month corrected…or he is one but 8 months corrected.” But now that just seems to be a thing of the past. The corrected age doesn’t mean anything to me anymore. I know that the doctors still use it but I don’t see the sense.
Today isn’t a great day though. A is still pretty sick, has the fever now and will be going to the doctors tomorrow. Physio was here this morning with OT but he didn’t do very well. A lot of blue spells and crankiness. Nutritionist was here as well. He has actually lost a full pound!
Now some reminiscing…
My journal entry from October 1st 2005:
Well sweetheart today was the day that you were supposed to come! You are 16 weeks old now or full term. And you are still so tiny.
I am exhausted and really need to sleep. I must have been last night too because I didn’t even write about your upper GI yesterday! It went good and you handled it well. This is good because I was up all night worrying about it because Danielle said she thought you would misbehave. But you didn’t! So the results show that you have severe reflux and I am not sure yet what they are going to do for you. There is some talk of a stomach tube to feed you but Marg told me that it won’t stop your reflux so we will have to wait and see.
Today went good for daddy and I. We got our new apartment and we both love it! It is really nice and I can’t wait to move all of our stuff in tomorrow. I am really excited though because we finally get to do your room!
Janice was on with you again today and you were doing well every time that I called to check on you. I miss you and can’t wait to see you to give you kisses! I love you sweetie. You will have a good night because Kris is on with you. Makes me more comfortable too knowing that you have great nursing while I am here in Guelph! Oh and you were 1989 grams tonight!
And from October 1st 2006:
Well this morning we drove daddy to work and then came back here and you had a nap. I had to wake you up at 10am to get you ready for your music class. You actually were really good there today for the first time. Both of the other times you were tired and fussy. You were full of smiles. Then grandma came and picked us up at 1:15pm and then we went and got grandpa from work. We were in Hamilton for 2:30pm for the meeting. It actually went really well. Dr. Meeny did admit that he believes that the domperidone had something to do with your problems but went on to say that he believes there is something else as well. He was very impressed with me and my knowledge of everything. He was also impressed about how supportive grandma and grandpa are. Dr. Sant’Anna is going to book you for a swallow study and a ph probe study to see how bad your reflux is. If it is better then we are going to change your gj tube to a g tube. And then we can work on more oral feeding and hopefully get you off the tube altogether. I am just really nervous about you having spells again. But maybe since you are older and your reflux is much better with the prevacid you won’t have a problem. She did also talk about the surgery as well. It is called a fundoplacation. She said normally the g tube is done with that to help the reflux even more. Dr. Mesterman is going to step back now since you aren’t on medication and just let Dr. Rosenbaum deal with that. She said that it is basically the same stuff that they deal with. So we’ll see how things go with him next week. She also was discussing your CP and her along with Dr. Meeny aren’t comfortable saying that it is CP. So that is frustrating. Hopefully Dr. Rosenbaum gives us some better answers when we go next Wednesday. We went upstairs afterwards and saw Rosemarie. She hasn’t seen you since you left. She couldn’t believe how big you were and how good you look. It is nice to see people that we haven’t seen in so long that were so great with you.
Oh it is so funny to look back at some days…..just shows me how much I have learned even in this past year. Not cerebral palsy? Domperidone? Fundoplication?
I love you little man.
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.
Well this past weekend was very busy and pretty crazy! We left on Friday night to head to Windsor so we could be there to celebrate Cale’s 2nd birthday party. He was also born at McMaster weighing 1lb4oz and we have become very close to his parents. We didn’t end up getting there until almost 1am which was just insane! A didn’t really sleep on the way down and when I had laid him down in the playpen he was just raring to go smiling away.
Saturday was the big day for Cale! He was spoiled and got TONS of cool new stuff. Aunt K also came over to celebrate the day and spend time with her nephew of course. I think Tina and Kelly had more fun with his new toys than he will! LOL
A hanging out for the party…
Cale and grandpa…
Cale and his daddy…
A and daddy…
Cale eating his stars…couldn’t get him to look at the camera for the life of me!
Aunt K and A…
Cale opening gifts with mommy and daddy…
Birthday cake time! (This kid was COVERED in icing!)
A and daddy…
A and Lady…
Cale watching TV haha I love how he stands right at the TV and watches it!
Cale and A hanging out Sunday morning waiting to head to breakfast…
Cale and A watching the TV intently…
We had a great time and I am so proud of you Cale! You are an amazing little guy and we love you very much!
NOW for Sunday. So we head out of Windsor on Sunday afternoon to head to grandma and grandpas for a night. J was taking me out for dinner at the lighthouse near C-town to celebrate our six year anniversary that we had on Friday. Grandma was taking care of A for the night and it was so nice to go and have a nice dinner and the night off!
The weather wasn’t the greatest but at least it wasn’t pouring. It would have been wonderful however if it was nice out because the restaurant is right on the water and you could tell how beautiful it would be on a nice night. We had a great dinner and then came the bag of gifts J had. I opened my card and then reached into the bag. I pulled out two CDs that were wrapped in tissue paper. Then came a tshirt wrapped in tissue paper as well. Lastly I unwrapped a timbit box. I started to laugh and asked what that was about. He said it was to reminise. For those of you who don’t know we actually met at Tim Hortons. Anyways at this point he was moving my purse that was on the floor between us and was VERY nervous. I could see him shaking and knew something was up. He got down on one knee once I opened up the timbit box and pulled out the small box inside. I opened it up and there was the ring that I have ALWAYS dreamed of! He was crying, gave a little speech (well for what he could) and then asked me to marry him! I have been waiting SO long for this day that I don’t think it felt real. LOL
Here is the picture that the waitress took for us before we left…
After all of that excitement we headed back to the house and the excitement didn’t end! Grandma was holding A and I noticed that his tube looked longer than usual. We laid him down and sure enough his tube was broken. It was out further than it should have been and the string inside the tube was coming out of his stoma site. I could hardly believe that after such a great night I had to deal with that! At this time it was about 10pm. I called the London hospital but of course didn’t get anywhere with anyone that I talked to. They all kept telling me that they couldn’t assess him over the phone blah blah blah. Well no shit, I’m not asking for that, I just wanted to know if I brought him in then would they fix it. She couldn’t tell me that. So finally I just said that I guess I would figure out what to do, when to bring him and so on and she said “okay, sorry I couldn’t help”. LOL
A was very tired so we put him to bed and I decided that we would get up early to head to London. Grandma took him for the night so I got a pretty good sleep. Besides the times that I woke up and was looking at my ring! haha
6:30am I was up and getting ready. We didn’t get to London until about 9am and A was pretty lethargic and fussy by this point. Long story short I have to say that I was VERY impressed with the London Childrens Hospital from start to finish. They were all very caring and sure to let us know that things were being done. We were out of there by 2pm and headed back to C-town. (I also found out that this hospital does GJ buttons but it is a pretty long process starting with a referral for A to get one. Great to know though because this long hanging tube is starting to be a real pain with him constantly moving around!)
We hung out for dinner and J’s grandparents had come over to have a drink to celebrate our engagement. I am SO excited!!!! So all of you (and you know who you guys are) better be ready for a big party!
This day brings back a lot of emotions and memories for me. It was 14 years ago today that my grandma passed away. She was a big part of my life and I will always remember and think of her. I was with her when she passed and that day still seems so recent to me. We were bringing her back on air ambulance and I remember just watching her breathing. I think I knew before the nurse did that she had passed. It was one of the hardest things I have had to deal with in my life but I know that she is in a better place. I really wish that she could be here with us today but for some reason she was taken from all of us way too soon. I know that she would be very proud of me and how I am dealing with things in my life. I also know that she would be a very proud and amazing great grandma to A. But at least I can say that I KNOW she is one of the angels that watches over him….
It was one year ago today that my little man came home to stay from the hospital! I cannot believe that a year has gone by already. He came home weighing 9lbs5oz and is now 20lbs! Here is him one year ago leaving the hospital…
And here is him tonight with his daddy…
So as you can gather from the pictures he is home. Long story short, they never know what is going on with him and I find it pointless for him to sit in a hospital that is full of germs and many other things that I don’t want him catching. If they aren’t going to do anything then he might as well be home.
I have to say that our experience again this time at Guelph was good. Taking him into a packed emergency room was nerve racking for me but once we did the whole triage ordeal they just took us right back. I still cannot believe how good they are about realizing how susceptible he is and then Mac who deals with preemies makes us sit outside on the curb with him!
So anyhow, the nurses in the ER and the doctor were also all great. Very friendly, kind and caring. The nurses up on the ped floor were also wonderful. And of course A’s doctor, Promnitz is also wonderful.
I got a great nights sleep thanks to Joyce coming up to the hospital and staying with A. I returned this morning at 7:30am and was happy to see that A was more like himself. Little did I know that he didn’t have a good night at all. Joyce said his movements were crazy and he was very unsettled. She held him to try and get him to sleep and within six minutes (she was timing) he jumped sixteen times. He had also vomited some more formula that she said was partially digested. Ugh I was so frustrated!
After Joyce left at 8am A threw up formula two more times. However I was just told once again that it is viral. What I can’t seem to get through their heads is that Ashton has NEVER thrown up formula in the year that he has had his gj tube. It is impossible to be “normal” when the tube goes past his stomach and into his jejunum! As well, A has had a few viral infections before now and it is just bile that he usually vomits. But what do I know? I’m just the mom who spends 24/7 with this kid….
I decided that since A no longer had a fever, seemed pretty much normal to me and no one listening that I would just bring him home. He threw up formula one more time since coming home and has had three loose poops. I called his GI team and left a message that they need to call me ASAP to get him in. They need to figure out what is going on.
So thank you everyone for all your thoughts and well wishes. And Lisa, thank you! That is the second time in one month that you made me cry!
I really wish that I wasn’t the one making all of the decisions when it comes to A! It would be so nice to find a doctor that could just figure things out. If anyone that reads this has any ideas let me know! At this point I am almost willing to take him anywhere to any doctor!
So that is it for February 23rd. I love you grandma! And A, don’t make this your way of celebrating your homecoming!
Well it was one year ago today that A was finally taken out of the PICU at McMaster and placed in the step down unit. He weighed in at a whopping 8lbs13ounces. I am so happy to be way past that ordeal. It was truly a nightmare that I didn’t think that A was going to come out of. But he amazes us all of the time and now is doing so much better than one year ago!
Well today was pretty boring. A was up at 9am which was nice. He had an okay night considering the night that he had before last. We did some physio and massage. He loves when you massage his legs and feet. You can really tell how much he relaxes. I have been trying to work on his back because he is so sensitive there but he isn’t too keen on it so far.
Another day off today with no therapists. It is so nice to have days that I can just do what I want to do with A and not have to have someone here.
His tube site looks a tad better but not much. It almost looks like a blister is forming now right where the entrance is to his stomach. Looks very sore but he is acting much better today with it. Tonight in the bath he even let me scrub around it and clean it really well without fussing. So that is a good thing. He will be going to the doctor at the end of this week anyways so I will have to get him to look at it for me. I have more silver nitrate here at home to use but I am not sure if I should really be using it when it doesn’t look exactly like granulation tissue. So I will leave that for now.
A is really loving the new cushion that we got for him on the weekend. I guess it is nice to see the world in ways that are more “proper”. I really can’t wait until we get his stroller and seating system. Then he will definitely be seeing things in a new light. As for the standing frame, I called his physiotherapist last week and asked for her to try and bring it this week when she comes but I haven’t heard back from her. I really need to get my butt in gear for writing a letter to send to different organizations to see if they will help out with the equipment that we want that is not covered. I cannot even believe the prices that these different companies have for the equipment.
Joyce was supposed to come tonight but cancelled because of the weather. I was talking to her at about 5pm and she said that it was already really bad in Hamilton. At the time we had nothing and now it is crazy outside. I went out for a bit tonight and the roads were awful.
Well some pictures from today…
One year ago today A returned to Mac. He was having ALTEs (apparent life threatening events) that we were told in NICU not to worry about. He didn’t have any for the month of January until the day after we got him home, go figure. However Jeff and I were so used to seeing him do this that we didn’t think much of it although it was VERY scary to watch! (It wasn’t until later on that we really found out what they were called and how serious they were.) So he was on the peds floor, and going from the NICU to peds is like night and day. It was very hard on me but I sure wasn’t expecting the whole thing to turn into what it did.
During these spells his heart rate would be between 20-40 and his oxygen saturation’s would be around 20. There would be no chest movement and he really looked like he was lifeless. Now anyone who knows what these mean knows how scary this would be! Yet when A would finally start to breathe you would never know by his behaviour or anything else that something like that had just occurred. And to look back and think of them telling me in the NICU that it wasn’t a bad thing and just to wait and A would come out of them. It wasn’t until later on that I learned that every time that he had one of these spells there was a chance that he would NOT come out of it! More of this story to continue later….
Well not much to say for today! It was actually a nice, quiet relaxing day for me. I got up with A at 9am (bonus!) and we did a little bit of his physio. I then put on one of his Einstein DVDs so I could clean up a little around here. After daddy got up I went out for a little bit and when I got home he went to the Storm game with a friend of his.
Grandma and grandpa came over after the game for dinner. We had spaghetti (yes again, I had tons of sauce left over!) A was really good today and should sleep pretty well tonight considering that he only had one nap today from about noon until 2pm.
I don’t even have any pictures for today! Tonight we watched the videos that I took of A and Alina. Wow I could just watch them over and over again! Those two kids together are just amazing!
Well I am off to bed…
Well today A and I were in Hamilton again. Grandpa came and picked us up at noon and we headed to the eye doctors for his check up. So we found out today that A can only see things about six inches from his face and nothing further. Anything else past that would be blurry and he would not be able to make out any details. I was kind of shocked but I think I handled it okay because of reading the story of another mom who just recently went through this. She had explained how her daughter was a -3 in one eye and a -7 in the other. She then went on to say that she had no idea because her daughter did so much! So A’s eyes are both at the -7 stage which is very nearsighted. His doctor was kind of shocked that in six months his eyes had gotten to that stage. So our little man will be getting glasses! I have found someone that is doing a special order for me (not many places do baby glasses) and when they are in I can go and take a look at them. I just wonder how much one child has to go through in life….
After coming home from the eye doctor A had a great nap. Daddy got home and then we got ready and headed over to grandma and grandpas for dinner.
So today is the one year anniversary of A being home from the NICU! Just some reminiscing….
Well it was one year ago that we were put into care by parent at Mac! (Our first night was January 11th). It was exciting for us but also nerve racking. I think we both knew that A wasn’t really ready to come home. But it was the first night out of five for us anyways and things were to really change by the end of the stay.
My poor little boy is sick again. I was hoping that yesterday would have worn off by today but he has just gotten worse. I woke up about 1am to him with major diarrhea. It happened a few more times during the night and he had to have a complete change of clothes each time.
The vomiting and diarrhea persisted all day today and he made me very nervous at times. He tries to hold back when he is vomiting so he goes nice shades of blue. Nerve racking at times even though I am so used to it.
Monique his physiotherapist was supposed to come and work with him this morning but I had to cancel that. There was no way that he would be able to do that stuff in his condition. Grandma ended up coming over instead and gave me a break. It is so hard to see him this way. He hasn’t had a fever all day so that is a good thing or else I would probably have him at the emergency. I can handle almost anything, but when he gets lethargic it just makes me worry that something more severe is wrong. And of course his doctor wasn’t in the office today so I wasn’t able to take him in there to be seen. It has all worked out so far, and Joyce is here tonight so I will be able to get some sleep knowing that he is being watched. It would be very hard for me to sleep with him so sick if she wasn’t here.
Anyways, I have downloaded the software needed for the video camera, but have not gotten the pictures on here yet. Sorry!
So instead, I thought that I would post some from one year ago. It is always exciting to look back and see how far A has come!
One year ago today…I remember it like yesterday. J and I got to Hamilton around 3pm and Danielle was cuddling with A. She was looking at me funny and smiled. She had asked if I was ready for some good news. That is when she told me that we were going into care by parent the next week! I started crying and then J had finished washing his hands and I told him. We were both so happy and scared at the same time. It had been a long time coming. He had the first set of his shots and his polyvisol had been discontinued. There was talk of changing his g tube to a button instead of the big ugly tube that he had but that would be discussed in the meeting with Dr.Watts the following week.
I gave A a bottle for his 8pm feed and he took 110ml which was great for him. Marg was on the night shift and we bathed and weighed A. He was 7lbs 13oz. So he has gained 11lbs 8oz since then! Crazy!(Oh, and the pictures are actually from a year ago yesterday.) And the cute little outfit is one of the two that Danielle had bought him for Christmas. It is so tiny that when I look at it now I can’t even believe that he wore it!