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!