Well I haven’t posted in a couple of days as things around here have been busy and A still has his low grade fever. Sunday grandma and grandpa came home from up North so we were all over there waiting for them to get home. It was also nice to be in the air conditioning!
Monday was a crazy day for me. I was having one of my very emotional days where I feel like my world is falling apart. Or has. I really don’t like the feeling but I think sometimes I just get so tired of fighting with docs and so on that I break. It is very hard to raise a child with all of A’s needs and I get overwhelmed sometimes. I am sure that you moms out there that have a special child know exactly what I talking about.
I was happy that Dawn was here that day to work with A because I just couldn’t deal with a fussy child that day. I don’t know what it is lately with him or what is going on, but I do know that he really isn’t himself. I think with so much changing for him it is hard for him. With having his implant on he has to deal with all of this noise that he has never had before. He is cutting seven teeth at the same time including molars. Just too many things going on at once. And this fever just won’t go away!
On Monday I tried giving A a bottle with water. He took 30mls within about five minutes and then he started to choke. I have to be very careful doing a bottle as he forgets to breathe/suck/swallow at the same time. So I have to pace him at about every two sucks. Anyhow he did great until he started to choke and then it all came out of his nose! Ugh it was gross and he was NOT happy.
However yesteray I tried a bottle and he took 50mls and kept it all down! I am so impressed with this kid at times that I just want to jump up and down! It is going to be something that I will work on when I feel he can handle it or shows me a sign that he wants to do it. With his reflux and blue spells it is something that I have to be very careful with.
Tuesday grandma was here and we took A to the doctor. He didn’t really say much except to keep an eye on it and if he still has the temperature next week to bring him back for sure. It ranges from 100-101 and no different. I wasn’t really that concerned with it as he doesn’t seem very ill but I wanted to get him checked out. And he said not to assume that a fever is from teething. I don’t think it is that because he has been working on these teeth for so long and never had the fever before.
I know that I myself haven’t been feeling the greatest the past couple of days so maybe it is just some bug that won’t go away! Today is actually the worst day for me so far as I just feel sick to my stomach and like I have a sore throat coming on. Not fun stuff that is for sure!
Monday was Aunt Shorty’s 18th birthday(my sister)! She was doing her own thing with her boyfriend so we got together last night to celebrate and give her gifts. A and I went for dinner with Aunt Shorty, grandma and grandpa. I can hardly believe that she is 18 years old already!
Today Shelly was here to play with A. Deb was also here to do his hearing therapy for a while. She is very happy with how he is progressing and even following sounds around the table when we were doing therapy. He had a new reaction yesterday to the vaccuum! He did NOT like it. Haha it was way too cute. Here are some cute pics from today with her drawing with A.
So I also went today to have my eyes checked. I have been asked so much why I am squinting so I thought I might as well go. Well turns out that I do need glasses but not that I have to wear all of the time. I couldn’t believe how much more clear the letters were that I was reading when she showed me the prescription that I would be getting! WOW I was amazed that for so long I have been thinking things are clear and they really aren’t! I picked out some really funky glasses after about an hour of trying tons on. LOL I’ll be sure to post a picture when I get them.
So I have a few days to update on. Monday and Tuesday night I got to sleep ALL night because Joyce was here! It was kind of a surprise to have her do those shifts, but I more than welcome her here whenever she would like! A was wide awake of course for her so they had a little fun with his computer…
Wednesday A had a very busy day. Grandma was here early and I headed off to a meeting with the social services board. Every year the government gives me money to use to pay workers to come and be with A. It is far from enough money, but hey at least it is something. Anyways, in March I got a letter telling me how much I was approved for and I did not agree so I had to write a letter to fight it. With that fight I got an extra lump sum but still was not happy. So this meeting was with people who didn’t know A’s case and were coming in with an open mind to decide whether or not I was treated fairly in the decision making process. I think it went very well so I will hear within twenty days whether or not I won.
Liz was here to weigh A and I was so surprised that he actually went DOWN in weight!! I have been thinking that he has gained like five pounds in the past three weeks but I was wrong. He is now 22lbs 10oz.
Bonnie his early interventionist was also here to work/play with him. She always brings a lot of neat toys and he is always happy to see new things. She had brought this really neat toy that is easy for him to push. When he does, the toy vibrates and there is a little light that comes on. This is the toy here…
He really needs to do a lot of work with switch toys because when he goes into his electric wheelchair next summer he needs to be familiar with this type of thing. I am happy that his EI is willing to leave toys with us because the price of switch adapted toys is just insane! Not surprising, as everything that is needed for a special needs child is crazy.
Bonnie also brought a little velcro piece that she had came up with to wrap around A’s hand to hold a marker so he can draw. Of course I think he got more on himself than the paper but hey, it was great to see him doing this! He is such an amazing little guy.
Wednesday night in this household was NOT fun. A did not sleep well at all and was very unsettled and not happy. It was one of those nights where it was pointless for me to even attempt to go to bed.
Thursday all day he was not well either. He didn’t have a temp which was good but it is so hard when I don’t know what is wrong. I had him sitting in his bouncy chair and was getting some laundry together and noticed that the side port on his tube was open while his feed was running. When I went to close it I realized that he had a ton of bile pouring out of his tube! I know when this is going on that it is usually his tummy that is not good. I diluted his formula half and half, gave him some tylenol and put some numbing cream on his gums. The poor kid is cutting six teeth right now, three of which are molars! (You can also see two others that will be coming through shortly.)
So yesterday I didn’t get much done. He wanted to be held at all times and if he saw me walking away he would fuss. After hours and hours of this he finally fell asleep and I was able to lay him on the couch without him waking up. He slept a good couple of hours and when he woke up he was fine! AHH what a kid!
Today was a good day. Dawn his PSW was here from 2-5pm but he decided that he wanted to sleep almost that whole time. I also had a new worker come over today so we could talk. Her name is Shelly and she is great! I am so excited to be having her come to work with A. She has been working with one of my moms students now for nine years and I know that if this mom is “approving” of her that I will have no issues. It is so nice to feel that I can trust some people with A!!!
Well today was the day that we went to Mac to see A’s GI doctor to try and figure out what to do about his reflux. With all of A’s issues it is difficult to figure out what is going on and when. I have looked back through my journal, and A had his tube changed on February 15th. On the 17th the vomiting of formula started. On the 21st of February he was admitted to hospital with vomiting, fever and a ton of movements with agitation. He had an x-ray at that point as I was concerned that something with the new tube wasn’t right. However things looked okay. I had asked for a contrast study but they do not do them in Guelph. Go figure.
Anyways, it seems that at that point all of the issues really started. So, his GI doctor said that she is going to put in a form to have a contrast study done to see what is going on with the tube and if it is in the correct place. I had told her my problems that I have had with a certain radiologist and she knew exactly who I was talking about. There is also the one nurse, and the same thing. She knew who I meant. I find this very sad that a doctor knows who I am speaking of. This obviously means that more people have had problems with them. I just wonder why nothing is ever done with people like this. So I should hear this week when the contrast study will be, she said hopefully next week. She also said that she wants to be there as well so I was happy to hear that.
Now, if the tube looks a bit off then she said they will change it and see how things go after the change. If things are fine then we will either have to try a motility drug called cisipride which I am not keen on. It is NOT available on the market and has to be special ordered. It was causing cardiac issues in babies/children who were taking it. So to get it, A will have to have an ekg and then the government has to approve the drug for him. I also would have to sign forms to get it. Then one month after starting the drug he would have another ekg.
If we don’t go that route, it looks like we may have to go the fundoplication route. This is also something that I do not want to do. But with the spell that he had on the 4th, it is very concerning and something needs to be done. So we will see what happens. I am not thrilled with either decision that I will have to make.
A has been much better today with the vomiting than he was all weekend. We were supposed to go for a playdate with Alina and Sophia before seeing GI but we kind of mixed up the dates. However I would not have ended up going as I was not feeling the greatest today. I think that A and I both have had some sort of stomach bug happening.
We stopped by the NICU to see if anyone was on, but no luck again today. I have been waiting for A’s first neo doc to come back (he goes away for months every year) but he had already gone home. When the front desk paged him, he called and wanted to talk to me. So we had a nice chat for about ten minutes. He is a wonderful doctor and we were SO lucky to have him overlooking A’s care for the first good while. I cannot wait to see him again as it has been about six months, if not more.
Some exciting news, A is getting TWO more teeth!! I have been wondering lately why he has not got any new ones in so long and sure enough I noticed the one last night. The other one you can feel. They are both on the bottom, so that will be a total of eight teeth!
Yesterday when A’s auditory verbal therapist was here to work with A, I was giving her the usual update and told her about A’s first word. I was a bit nervous but I told her and she was thrilled!! She is happy that he is making new sounds and like she said, he doesn’t know what it means so it is not a big deal. She actually said to even encourage it if we can. When he says it, we are supposed to show him a truck and say “yes, truck”. (He has not said it again anyways).
I told her about A’s spell and she did warn me that sick kids might not do the implant if he isn’t stable. So that was a bit of a bummer, but at the same time I understand their concern. Every time that he is put under is a risk already and with a major surgery it makes it more complicated. So we will just have to see how that all works out as well.
Anyhow, some pics from today….I got a ton of smiles today!! YAY!