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!
Well January 23rd is sure a day that will always be in my thoughts. January 23rd 2005 was the day that I found out that I was pregnant with A.
January 23rd 2006 was the day that A finally came home after 227 days in the NICU. Although it was only a short visit home it was still a day that we never ever thought would ever happen!
January 23rd 2007 was the day that we found out that A was legally blind. We had always known that he would have issues with his vision but never in a million years did we think that we would have to deal with the whole “legally blind” thing.
January 23rd 2008 A was in Toronto Sick Kids undergoing many tests to try and get to the bottom of his blue spells. It was the day that we found out that his lungs were 40% lipids and that I had no choice but to go with the fundoplication.
Thankfully January 2009 has nothing that will always be tied with it!!!! haha Well maybe…the day that we FINALLY got in the New Bug Seat that I have been asking for to trial for almost a year!!!!!!!!!!!!!!!
Well once again I have been slacking. Things around here have not been that good and I am just tired, stressed and not handling things well right now.
I will start with some great news though. A was back to see the amazing Dr.Wiggins just over a week ago. And if you remember right, last time we were there I was told that A was not using his right eye to see at all. Which totally made sense as to why he was better with toys on his left. Well of course my little man is amazing and he is now using it to see!!!! Dr.Wiggins was very impressed with this as six months is not a very long time to start doing this and see a change. Would you expect anything less from A?!
I am sad to say though that A continues with having issues at night and his blue spells. This has been going on since November 6th. NOTHING has changed. He has also had a couple more of the “episodes” that are new that I was talking about a few weeks ago. He had one two nights ago on me and I was able to capture the end of it on video and he also had one last night at 3am. He was on the monitor as he was in bed and his sats went as low as 26. Heart rate didn’t go down and maybe elevated a little. Funny because I always forget to look at his heart rate and remember it as I am so focused on what he is doing and how blue he is. I did notice last night that he bites down VERY hard while doing these.
I am so stressed by all of what is going on and don’t really know how much more of it I can take. I am having a really hard time understanding why things just seem to be getting worse. I had to deep suction twice last night and this is something that I don’t normally EVER have to do. I hate doing it too which makes it worse. He cries as soon as he sees the machine and I get all teary eyed doing it because it is just not fair that he has to deal with this crap.
I am afraid this post is pretty negative but I just need to get it all out. It always seems to help me.
So we saw A’s doctor on Tuesday as he had to get his flu shot. I told him how things are not any better since our admission to the hospital on November 10th and that something is going on. He told me that he didn’t know what else to say or do. Well figure it the *$%^ out! No I didn’t say that but that is how I feel. He then went on to add that he feels it is just A holding his breath and told me that I need not worry about what he is doing. Really?! Need not worry? I am the one who deals with A 24/7. I am the one that watches him struggle every friggin day. I am the one that has to stimulate him, blow in his face, try to stay calm when he completely stops breathing. I am the one that has to think in that second of whether or not to call 911. I am the one that cries after every episode because it scares the crap out of me. I am the one who screams why why why. How do I not worry?! These are NEW episodes. They are DIFFERENT. And they are in no way breath holding. Besides that was the explanation for the last episodes and these are different. But for real. It is all just a bunch of bull.
I thought that I figured things out the other day when I noticed that the Nutren 1.5 that he has been getting (one can a day) along with two cans of Nutren Jr w/fibre was expired. This was on the 27th that I figured it out. He had 22 cans of the expired formula which would take us back to November 5th. Perfect timing as things started to go off the night of the 6th. Well after some discussion with the pharmacy, Nestle and other moms this probably is not the reason. Why? Because when making expiry dates they are extremely generous as well as the fact that no bacteria can get into the can. They were dated March 2008. They never smelled bad. The only thing that would likely happen is that the nutritional content goes down. He has been getting GOOD stuff for three nights and nothing has changed. If anything these past three nights have been worse.
Mommy instinct tells me that his tummy is bothering him. It is what is waking him up. It is what is keeping him up crying and fussing at night. But what do I know? That is the feeling I get when I tell doctors what is going on. I will be once again emailing his team at Sick Kids. I have to go into clinic to discuss anything which is fine. They need to check out his belly and they need to order an EEG. Not just a 15 minute one either. And I would also like a ph probe done as I really notice a lot of reflux lately so I am curious as to what is going on there. I don’t think this is too much to ask from a mom that is frustrated angry and tired.
Well I have said it. I was wrong for once! LOL We went to Toronto Sick Kids on A’s birthday for an eye check. He had not seen anyone since January 2007 when he first got his glasses. Anyhow, the eye doctor at sick kids isn’t the friendliest of people and sure has no manners or people skills. I guess not unusual considering the amount of kids that she sees everyday. She FINALLY checked his eyes just after 11am (our appointment was at 9am)and said that he was a -6 in each eye but wrote out a prescription for -4 because I had said how he is always taking them off. She said that maybe he would tolerate the -4. That was it.
Yesterday we were off to see Dr.Wiggins in Waterloo. I have been waiting for almost a year to take A to see him and was very excited! I have heard only great things about him and I can tell you, this man is AMAZING! Never in my life have I been so impressed with a doctor. It takes a lot for me to say this, but pretty much the minute I SAW him I knew he was great.
Well, my mommy instinct was very wrong in thinking that A didn’t need glasses. A is legally blind. His vision is 20/200. His glasses that he has are perfect for him. He NEEDS them. I was also able to see the world from A’s eyes. It was at this moment that I realized just how bad his eyes are and how much the world around me sucks seeing things that way. I felt guilt. Guilt because I have been the one thinking he doesn’t need them, therefore he doesn’t wear them. Well he will be wearing them EVERY waking moment in the day from now on!
Another interesting thing he did was to take a picture of A. He then passed it to me and told me that when I looked at it he wanted to know what I noticed right away. I wasn’t sure what to think and I took the picture. Right away I noticed that A is looking at the camera with his left eye but not his right! I couldn’t believe it!!!!! He has a lazy right eye and Dr. Wiggins says that he definitely favors his left eye and doesn’t always use his right. I have MILLIONS of pictures of this kid and I have NEVER EVER noticed this. But it does explain why A does better with toys on his left. When they are on his right he arches so that he is able to see them with his left eye.
A’s therapist from CNIB was there for the appointment and I had to apologize to her after for the way I have been so adamant that A didn’t need glasses. I will definitely take things that she says from now on to heart! Dr. Wiggins told me that it is VERY normal for parents to think the way that I did. Many times he said parents don’t find out how bad their children’s eyes are until they are in school! Kids compensate and don’t know any different than what they see. I guess it was the same as not finding out about him being deaf until he was 15 months old.
This doctor spent over an hour with me and A. I was a little emotional and he was great in helping me deal with how I felt and how much it totally sucks having a child that is deaf/blind. Still, A amazes me. He even amazed the three that were in there, including Dr.Wiggins. They did the part of the exam where they hold up cards and there is a little hole in the middle that they look through to see where A looks first. One side of the card has black/white lines and the other has nothing so they want the child to look at the black/white. Well after a couple of times, A was actually so focused on that little hole he wouldn’t look anywhere else. He knew that someone was behind there!
Dr.Wiggins must have asked me twenty times if I had anymore questions. He will be following up with A in six months so it will be great to see him again. I can’t even say enough about this man!
Now for some new pictures of my little man! With glasses!
Well we have entered June. A crazy month in this household for sure! SO much happening and SO much to look forward to! In 8 short days my little boy will be turning three years old! I can hardly believe it!
I have my FIRST dress fitting next week along with a trip to Toronto Sick Kids for A’s eyes and a trip to Waterloo to finally see Dr.Wiggins who we have been waiting almost a year to see!
We went to grandma and grandpa’s yesterday for a barbecue to celebrate grandpas birthday which is actually today. A was a show off and rolled over for everyone there to see it!
So my first birthday wish is to grandpa C, my dad, my friend, my hero.
He is an absolutely incredible man and one that I wouldn’t trade for the world. He has been there for me through SO much and I am so lucky to be able to call him My Dad. I can’t stop thinking about my wedding and having him walk me down the aisle. It is something I have dreamt of since I was a little girl and it is going to be so great to finally have this one dream come true! I can pretty much guarantee that it is going to be ONE of the hardest things in my life to get through without tears. Well actually I am pretty sure I won’t get through it without tears. LOL
So happy birthday Grandpa! We all love you!
And some pictures from yesterday…
Mady and her friend Sadie…
My sister and her new man…
My dad trying to read his birthday cards…
My brother and soon to be sister in law….congrats guys!
And the next birthday wish is for grandpa S who celebrates his day tomorrow! He is also an incredible man, who very shortly is going to be my father-in-law! And honestly, I don’t think I could have a better father-in-law than the one he IS! And I have to say that I am looking very forward to his speech that he has written for his favorite daughter in law! LOL We all love you!
Wow, it has been a while since I have updated this blog!!! No wonder I have been getting the odd email asking how things are going. Well, things are actually going VERY VERY well!!!! A has still not had any vomiting issues and I don’t think I recall much gagging either. His feeds have changed dramatically since getting the g tube and it seems to have really helped. He was getting feeds every four hours in the day and then nothing from 11pm-9am but now we are on continuous from 10:30pm-8:30am. He then gets a feed from 11am-1pm and 6pm-8pm. And knock on wood this is helping big time! I am slowly going to try to increase the amount to take time off but I am sure going to do whatever works for him.
Things have been totally crazy around here trying to do wedding planning and getting things in order. Time is going so quickly and I am so worried that something isn’t going to get done! I have been hard at work making all of my own invitations and reply cards and WOW is it sure a lot of work! I didn’t realize how much work is put into a wedding until I started planning my own!
Today the pastor came over that will be performing our wedding ceremony and he was great. J and I will start marriage counselling the end of May which will consist of four one hour slots. I had to laugh to myself kind of when this came up because God knows that if we have made it through what we have then we sure will be fine!!! I don’t know how many people that have a child with A’s needs, hospital stays and issues would survive. I actually have to sit back sometimes and realize how proud of ourselves we should be. And to think that after three of the hardest years of our lives we are more in love than we were before A! This wedding is going to be VERY emotional and I am getting so excited for the big day!!!!
Anyhow, back to A. He has also been satting pretty well at night still, above 90 which is okay with me. He still does drop but is not requiring oxygen since the last bit where he did. He however has a new thing that he does which is dropping his heart rate too low. The nurse was here last night and said he did it 27 times. I even know during his nap he does it and I have NO idea why. Most of the times when it happens he is satting at numbers you typically don’t see with him! LOL If it isn’t one thing, it is another with him. I am a bit concerned as I know this is new for him but he does pop right back up so I feel much better with that.
Lately, J and I have been having a hard time dealing with how upset A is getting. Last night was pretty rough because he was SO fussy and all he wants to do is stand up. He loves when you hold him up and he can walk around. His eyes light up and he is SO proud of himself. After long periods of time we need to take a break because he is so heavy and he gets very upset. He just wants to go. I almost started to cry last night because he knows what he wants to do but yet he can’t do it. He is really changing in this way with everything around him. Even toys, he tries SO SO SO hard to get things and when he can’t he gets very upset and frustrated. It is wonderful that he is trying so hard, but it is becoming apparent to J and I just which way things in life are headed for A. As he gets older it is much harder to please him and he just wants to keep on going. Lately I have been walking him for up to two hours a day because he just doesn’t want to do what he used to do. He loves being outside so I do it to make him happy.
On a good note, I received a call the other day from a doctor that I have been waiting to see since last August. He is an eye doctor and he is supposed to be VERY good at what he does. They actually have two weeks out of the year where families from all over the world bring their children to see him. He has students that interact with the kids and then after an hour of observation he is supposed to be able to tell you what they see, how they see it and overall what their vision is like. I am very excited because lately I find putting on A’s glasses that he doesn’t want them on. The appointment isn’t until June but it should be interesting!!
Speaking of June. WOW, we are already in May. My little man is going to be THREE next month!!!!!!!!!!!!!!!!!!! YIKES, where does the time go?!?