Well first things first. On Thursday I went out for a bit while grandma was here with A. When I came home she was very excited to tell me that A said TRUCK twice!!! She said she was SO excited and ready to cry hoping I would come in the door that minute. She was playing with a truck and just kept saying it over and over and then boom he said it!
Well last night I was sitting on the couch holding him and he was very focused on me. I kept saying CAR and he was really really watching my mouth. Then he said it!!! Probably about six times in a span of five minutes! J was sitting next to me and it was so amazing to hear him finally say something that you KNOW is purposeful!!!!
And my last bit of excited news, is that A slept in his big boy bed last night for the first time. He was VERY excited when we laid him down at 11:30pm and I didn’t think he would go to sleep but he did. I thought that I was going to cry as this is a HUGE step!!
Look at the head control!!!
Bonnie, his EI was here to help out by blowing bubbles during physio…
Using a joystick switch control for the first time and doing great! Of course it has to be a bubble blower! hahaha
A is his big boy bed for the first night! He looks SO small now!
Think he likes it?!? hahaha
Night night buddy!
And this morning I heard him moving around so I went in there with my camera and he was starring at the wall…
And then when he turned and saw me!
Way to go little man, mommy is SOOOOO proud of EVERYTHING that you do! You definitely are my amazing little man!
I have been seriously slacking on this blog! Things have still been pretty busy since the wedding and getting the house. A has been doing great since coming home!!! I am now back into working up on his blended diet and so far he is doing great. We really need to try and get some weight on him as his dietician is a little bit concerned. A year ago A weighed 24.7lbs and right now he is 24lbs right on. For some reason he is just not gaining weight and it is beginning to be noticeable. I have added in some flax oil which is great and sausage for his breakfast which is a nice 130calories for a small piece! I was very excited about a week ago when I found a soy nut butter however his body doesn’t seem to agree with it. His last feed of the day ends at about 7:30pm and at 10pm his belly still had way too much food. I cut out the nut butter two days ago and last night his belly was fine. I may try to add it again later but I will wait a little bit. I was hoping he would be okay with it as it is 140cals per tablespoon!
He has been doing wonderful in his therapy and is really enjoying colouring. He insists that he does it on his own however which usually leaves him covered in markers. My independant little man. Physio, well not so great. The last few times when she comes he is NOT happy. Last week he screamed and cried through the entire session and it was actually kind of heartbreaking. I think he is really starting to associate things together. So he knows when he sees his OT and PT that he has to work. As well, when the nurse has come the last two times he goes from being the happy boy he is to the pouty boy who won’t let mommy leave the room. I think he knows that when the nurse comes it is bedtime and boy, this kid does not always want to go to bed! This does make me happy though knowing that this is all part of his great development and understanding!
On another note we were at Mac last week to see my absolute favorite doctor, Rosenbaum. He is growth and development and this man is amazing. He absolutely adores the kiddos that he sees and takes great interest in their lives along with worrying about the parents.
I finally got up the nerve to ask him about the domperidone issue that A had in the NICU. He told me that he was going to talk to two of his friends who are also docs to see what they thought and to see if they would have any info for me. Well he sure does follow up quickly as two days later I had a response. We may be onto something here!
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!
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 I thought I would do a post before we head out for Toronto! A is getting his MRI and CT scans done tomorrow. The MRI is for the cochlear implant (the last step before we find out whether or not he is a candidate!) The CT scan is for his doctors in London. We arranged for them to be done together so that he wouldn’t have to be put under twice.
Today A’s early interventionist was here. It has been a LONG time since we have seen her as she was off sick. She is absolutely amazing with him and you really know that her heart is in her job! She comes to play with him and help him with different toys and such. Well today she helped him draw a picture!!! I once again had a moment where I could feel the tears well up in my eyes. Amazing how such small things mean so much!
Grandma was here too today and A had some fun with her today!
Anyhow, I am off and can feel the butterflies in my stomach already about tomorrow!
Well today was a busy day for A once again! (Are there ever days that aren’t?) Anyhow I was kind of in panic mode this morning because I heard the phone ringing and when I woke up it was 10am! And little A was still sleeping. However his early interventionist Bonnie was coming for 10:30am. Needless to say I hate feeling rushed but she ended up being late so it all worked out well.
She always brings all of these neat toys for A to play with. We have a enabling device that he just pushes the button and it makes the toys go. It is really neat because it can connect into many different toys and makes it much easier for him to do. So today she brought this really neat train that connects to it and he LOVED it! She has left it with us to use for the next few weeks.
I had asked her on her opinion on why A seems to have issues holding toys and seems very sensitive. She said that it is very normal to have sensory issues with all of his problems and it is something that you have to work on to help him get over it. I remember when we first brought A home how you could tell that he was kind of in “sensory overload”. And that was just by playing with him like a normal baby or when there were a lot of people around him. He doesn’t do that anymore, but he still does it when you touch his hands, feet or even tickle him. I have found some really neat sites for enabling devices and toys for special needs children. I have put a link on the side under sites that I like. There are so many neat things out there for children with special needs!
A few pictures of Bonnie playing with A….