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 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….