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!