Well let me start off two weeks ago today. I got a call from A’s chest team saying that they believe that he just might have cystic fibrosis even though his sweat test that we did in March came back negative. WHY? Well because of the pseudomonas. And if he comes back negative for cystic fibrosis then they want to look into primary cilliary dyskenesia. So a lot of people have been saying “well at least they are doing what they should be now.” Yes, very true, BUT they are only looking into things now because of the pseudomonas. That’s it. I have been telling them for YEARS that they need to look closer at his lungs. In my mind it is the ONLY thing that they have not ruled out 100%.
Last Monday we headed to Sick Kids. We were told to not be late for our appointment as they would rebook us and that would be it. We have been waiting for this genetics appointment now for over a year. Anyhow we were there on time and placed into a room. A nurse had come in and took a little bit of information down about A and left telling us they would be right back. This was at about 1pm. At 2:30pm I went out and asked the man at the desk if we were forgot about. I mean for real, one and a half hours sitting in a room with a child that usually is napping at this time?? He told me the doctors were probably in the back room talking about A. Hmmmm well they didn’t know much yet, how could they be talking that in depth about him? That so wasn’t the case.
Guess what time we finally saw the doctor? 4:30pm!!!!! No apology, nothing! I was not too impressed and can’t believe that a doctors office can get THAT behind. Just not right at all for families to wait this long.
Anyways, we talked about A. He had read his files. Well some of them. He would need a year to read everything. He feels that something else is going on with Ashton but again just has no idea what or where to begin. One of the things that he was really hoping for was a new MRI. Unfortunately this is not going to happen as A has his cochlear implant and cannot have an MRI. The only way this would be possible would be to remove the implant, do the MRI and then replace the implant. And there is not a chance that I would do this to him!
So we left the appointment to head down to get a bunch of bloodwork done for this genetics doctor as well as the gentic bloodwork for the cystic fibrosis. When we go back to this doctor in 6-12months we will discuss the results as well as talk about doing biopsies and a spinal tap to check for neurotransmitters. Nothing like moving slow eh?
In other news. We had H’s service here on Sunday, Mothers Day. It was perfect for us and I feel much more at ease with everything. I definitely needed to do it to help me heal. To ease the pain. To put him to rest. We did a balloon release for him at the end of the service which was really awesome. I had pictures laminated of him and we attached one to the balloons before they were sent off. I also mailed out a ton for people that wanted to be a part of this for him. I have had six different people email their pictures already of the release that they did and WOW how touching. I cry every time I look at them. It means so much to me that people care enough to want to do this for us.
I will post the pictures we took soon…I have no space left on this blog so I am trying to figure that out!
Well not much happening here in the S household. I have a million things on my mind and what I need/want to get done here before summer! We really need to finish painting and we would also like to finish our basement. I got the ball rolling today and had my friends husband come and take some measurements and look at what exactly I want done down there. So hopefully within a short time we will have a ton more room and a place for all of A’s toys!
I have still been feeling pretty crappy most days but I really have to say that it makes me feel a bit more confident with the pregnancy because I never had this with A. As well I have been told that it means that overall the baby is doing better. This is a great thing and I expect this baby to stay in my belly until at least August…due date being the 25th! I have found this week as well that I just really have no energy at times and could stay in bed all day if I was able but of course that just can’t happen! The only really concerning thing to me is that I have been having chest pains for a couple of weeks now. Very off and on but sometimes it comes on so strong that I have to stop what I am doing. Yesterday it was pretty much an all day thing which had me kinda freaked out but today has been a bit better. It is something I will definitely have to bring up with the high risk team when I see them a week tomorrow!
Of course I think the other issue is that I know too much. I can’t be oblivious to things that happen in pregnancy as most mothers can. I know all too well the horrible things that can go wrong and it scares me half to death. I am trying to stay positive though with this one and have warned “her” (haha) that I expect her to wait until the right time to make an appearance and to not be like her brother.
J and I find ourselves talking a lot about the “what ifs” and how we both feel. I think this has helped us cope a bit better with the whole idea of another baby. The preemie thing is definitely not something that we ever ever want to experience again so I just hope that things go smoothly!
I find myself wondering a lot how A will be with the baby and how the baby will be with A. It is the one thing that I am really looking forward to. I just hope that this baby is a great brother or sister to A! I think it is going to be very good for him to have someone else to grow up with and to play with. ALL of the moms I have met that have children after their special needs child have told me that it was the best thing that they ever did for them. So we will just have to wait and see!!!!
A has been good as well. I can’t believe that so many people seem to be getting sick lately but he has been overall pretty healthy! *knock on wood* He had some funky rashes happening late last week but I have no idea what they were and out of nowhere they just stopped happening.
His auditory therapist has been starting with switch toys (he does use them with EI already) and she asked if she could try it using his head to control. I said sure but didn’t really think he would catch on but sure enough he was pushing his cheek over to make the toy go. What a smart little man eh?!
On Thursday, A’s cochlear implant decided that it wasn’t going to work anymore and I tried everything but still wasn’t working. I then called United Hearing (where I order all of his pieces from) and the first thing the lady said to me was “are you sure that you are trying to turn it on with the right button?” Ummmm HELLO he has had the thing for a year and a half, there is only three buttons on it, I can do it with my eyes closed…yes I am using the right button! So she tells me that if I have replaced all of the other pieces that it is most likely the actual processor which is the only part of the implant that I don’t have a spare of (you cannot have spares of these). So she tells me to call Cochlear USA and talk to them. So I call there Thursday afternoon. Talk to the lady and tell her what is happening. She tells me that she will have to call his audiologist at Toronto Sick Kids to get his mapping program from them to put in on a new processor and then send it out. So I asked how long this will take. She says she will call Sick Kids on MONDAY and then it takes usually two days to get in the mail. Hmmmm so he has to go almost a week without hearing?! Call Sick Kids on Friday!!!!!!!!!!!!!! I was upset and angry. I called Sick Kids on Friday and had them send them his mapping program to them right away. UGH people just don’t get it. Poor guy probably wonders what is going on.
And tonight I get a night out! Andrea (soon to be bride of my brother) and all of the girls from the wedding party are going to see Bride Wars. WOO HOO should be good!
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 we are still in hospital. Last week went pretty slow with not much happening around here. Beginning to become a regular thing. The good news is that we got a new chest team that started on Wednesday and I really really like the lady that I am dealing with. She LISTENS to me and FEELS my concerns. These are definitely hard to come by around here so this is great. She had asked me why an echo hasn’t been done yet and I explained that the last team said that it wasn’t cardiac related. She then went on to tell me that she is concerned about heart failure because of all of the low desats he has been having and with what is going on. I agreed with her that if she felt it was necessary to do the echo then I was all for it. She put in the order.
Thursday comes around and I was speaking to the complex care team. I asked about the echo and they told me that they had talked to chest and that the chest team didn’t realize that A had just had one done in November that was fine. He then told me that they were satisfied with the results therefore would not be wanting a new one.
Thursday IGT also came in to speak with me about the botox that they wanted Ashton to have. It was then when I found out that there are many risks with the botox. After discussing it thoroughly with the doctor I was comfortable with going ahead and signed the forms for it to be done on Friday morning at 9am.
Well, later that day I was not feeling so great about it. My gut was just not right with the idea. And when I have that feeling I know that I need to listen to it! So at 4pm I talked to his NP and told her that I was cancelling it. Well to make a long story short, they were not too impressed. But guess what? I don’t give two shits! I then went on to tell her that I wanted to try him on the med first that does the same thing as botox. This was the med that they told me about a week ago that they didn’t want to try because it can thicken secretions. Well I figured after asking many moms about it to give it a shot. Who knows, it could work. So he was started on that at a low dose and we will probably have to increase it tomorrow as I don’t notice any change yet.
Friday. A HORRIBLE day! Chest doctor was here and asked why the echo had not been ordered. I said that I talked to complex yesterday and they told me that you were satisfied because of A’s echo in November. Boy was she angry!! She told me that she never said that and has placed it in the notes three times that she wants one done!!! She then opened to the last note she had wrote and asked if he knew how to read?! LOL I told her that she needed to talk to him because I was tired of always getting different answers from different doctors. Kind of crazy if you ask me! Things like this just should NOT be happening!!!!!
Then around 2pm I went to lay him down for his nap. Well he was NOT doing well. He started into one of his fits and it lasted almost an hour. Thank goodness that his favorite nurse was on and she is so wonderful with him. I was getting VERY emotional. I am just so tired of seeing him so blue so often. I left to go to the washroom quick and when I was coming back I saw his NP. I told her that I wanted a probe done because I think he is still having issues with reflux and that I was tired of them sitting around not doing anything when A is obviously struggling! She said we could talk as a team on Monday to see if the probe was necessary. I told her that it was because either way I wanted to know IF he was refluxing still. I mean it is obvious that the fundo is working but he has not had a g tube in two years so it IS possible that he just cannot handle g tube feeds.
I went home on Friday night because Aunt K and Grandma S were coming down so that we could go and get Kelly’s dress for the wedding on Saturday. I really did not want to leave but felt comfortable knowing he was well taken care of with Jordana.
Saturday went well for dress shopping and now just two left to get. We drove down here on Saturday in the nasty nasty snow but luckily we got here before the worst of it came.
Today is A’s 8 month hearing age!!! And to top this post off with the best news yet…..the complex care team is switching over tomorrow!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am ecstatic! Can you tell? LOL
Already half a year has gone by….congratulations little man on accomplishing so much more than they thought you ever would!