So since my last post everything is pretty much the same. We went and saw neurology a month ago as we haven’t seen her in almost a year. I have to admit that she really has come a long way from way back in the day. I think it has been very difficult though as she has been A’s neuro since day one. So for years she blamed all of his issues on being a “preemie” and it wasn’t until we have seen her the last two times that she truly feels that he is missing another “diagnosis.”
Today we talked about A and how tight he is with his legs. We are going to get him fitted for “gators” that he will wear when he sleeps to help stretch his legs out. He used to have a very low tone over his entire body however over the last year or two things have changed and he is spastic most of the time in his lower half. A perfect example is how he sits HORRIBLY in his wheelchair and it is very odd to see him “relaxed” even while sitting. Arching is definitely his thing!
I mentioned that we are in the works of getting him a stander which she thought was great. She did tell me that he should spend at least 90 minutes a day in the stander to give him the effects that we need to give him.
Disappointed yet again.
It never fails that we truly seem to get the shitty end of things for A. Neuro wanted to know why he doesn’t have these things already? Had PT not talked to us about using gators? Hmmmm yet again I have no idea. I had asked his PT in the past about getting some sort of braces for his legs and I was told “he doesn’t need them.” So what am I supposed to do with that? These people are supposed to know what they are talking about right? HA! I should have known from our history that this isn’t the case.
Stander. Well *I* asked to first try one a LOONNNG time ago. I think A was about 15 months old the first time we tried one. We don’t have one yet because they are SO slow and keep messing around. We don’t have one because nothing ever seems to work for A the way that it should. And these standers are NOT cheap. The one that we just got the quote on is almost $5000!!! It is absolutely crazy and makes me sick to think that we as special needs families are totally taken advantage of!
Heck, A is almost 5 and we have YET to get a seating system for in the house. We have YET to get his wheelchair the way that it should be.
We will be going to her spasticity clinic in July. She will have her therapists there to look at A and we will go from there.
However on a good note we also met A’s new PT a few weeks ago. It was a blessing actually because his most recent PT was as useless to us as it gets. She however has left the company hence our new PT. She actually seemed to know what she is talking about. We really miss our old PT who moved away!!!
Next a dreaded word for me.
This has been the biggest stress in my life lately. Now don’t get me wrong, I really want A to go to school HOWEVER I am really really concerned, worried, scared…just about any word you can imagine.
J and I had a meeting about a couple of months ago with A’s homeschool. It was the first of a few that we will be having. So my biggest thing the last few years is that I don’t want A to have a nurse at school. However now with the trach we do not have a choice. Fine. But I told them that the ONLY way that he is going to school is if he has a nurse AND an EA. Period. No ifs and or buts. They said they could probably work that out.
Even still I am nervous. We were told that any time that A is to have an “episode” they have to call 911. I am sorry, but I don’t want to be called into the school everyday or the hospital for that matter because of his episodes. Now I did tell them that I do have an EA that I would like to work with him in school but they just say over and over that I can’t choose his EA. I realize this, but would you not be more comfortable with someone that KNOWS A and how to handle him then to have someone learn? Yes they would. I won’t be giving up my fight. I think they got the idea at the end of the meeting just how much I fight for this little man!
On Tuesday we had the much dreaded/feared appointment to get the results for his muscle and skin biopsies. All was NEGATIVE!!!!!!!! Actually the doctor said that A’s mitochondria is the best he has ever seen on a biopsy. Go figure eh?
He did however send me up for bloodwork as well as he is concerned about my repeated miscarriages. He thinks there is a possibility that I could have what is called Anti APL Syndrome. Long story short, lets just hope I DON’T have this. I am not sure when the results will be in.
Wednesday night we spent the night in hospital for a sleep study. His last one was in 2008 when it was done at Sick Kids. This should be very interesting to see the results to compare them to pre-trach.
There has been a lot more going on but I will get into that on my next post. I think this one is long enough already!
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!
Sorry that it has been so long but things have been very busy around here (what else is new?!) and I have gone over my limit of pictures on my blog so I had to erase some older ones and will be buying some new space for more!
So whats new? Well A is still being A. I am on my way working back into the blended diet as I do not think that any of the foods were causing his issues. He still continues to have episodes of going off colour in the day and being fussy at night. Not sure what is going on at all. I have been chatting with the team at sick kids and I finally got an answer from them YESTERDAY of what the teams thoughts were on the video I had sent. Well she said that they feel it is the same thing he was doing inpatient only with teeth grinding and that mixed with breath holding makes things like this happen.
Well I emailed them back saying that what he is doing is NOTHING like what he was doing before at all. I also told her that I did not want to hear the saying “breath holding EVER again”. What A is doing is NOT breath holding and never has been. The doctors know my feelings on this. She also said they wanted to do botox again in his saliva glands. I am not for that at all either because it did not do anything the first go around. So anyways that is that….
I cannot wait to get this kid a new bed!!! I am getting so frustrated with how he moves so much at night and gets his legs and arms caught in the crib. Half of the reason I think he wakes up at night is because of this so in a month this little man is going to have a big boy bed!!
And now for some tear jerking exciting news! The other day his EI worker was here to play/work with him. At the end of every session she colours a picture with him. She gets the paper ready and then will hold up two markers and make him choose what one he wants. Then she will put it in his hand and hold his wrist while he moves it around. Normally he isn’t even paying attention to the colouring at all and is trying to pull the marker back to put it in his mouth. Well this time he coloured ALL BY HIMSELF! She wasn’t even holding his hand AT ALL! I grabbed my camera and snapped some pictures and then I grabbed the video camera and taped him. He is SO amazing!