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.