Last night daddy, A and I went out to get a few things from the store and I ended up buying A the first years reclining feeding seat. I should have bought this a LONG time ago but I wasn’t too sure how well he would sit in it because it didn’t look like it had much support, but it is absolutely awesome! Thanks Billie for recommending this seat!
A is now able to sit right on the floor to play and also can sit at the table with us! If we had of gotten this seat for him six months ago there is no way that it would have worked because he always needed to be reclined, but now he sits great pretty much straight up!
This was late last night after getting in and setting it up…
This morning while mommy was getting ready…(can you tell he LOVES the Backyardigans?!)
This afternoon I got A packed up and we headed over to spend some time with Sean. My mom works with him and has for years. He is 21 years old and has cerebral palsy as well. He is an awesome guy and he had so much fun with A!
A was pretty grumpy when we got there because it was his nap time so I laid him down for a sleep. Sean kept asking if he could hold A when he woke up. As you can tell by the pictures, he did a great job!
When he was holding him he said that he wanted a baby and then said that he wished that A could live with him. LOL
When Sean’s mom came home from work she was holding A and Sean just wanted to keep making sure that she was doing it right. He kept telling her to “be careful” over and over.
Well we are still a pretty sick household here! A is on day 11 and mommy is on day 6. I never understand how we get sick because I am constantly washing my hands and using sanitizer. But it just goes to show that you can’t kill every germ that comes your way!
I had to post these next two pictures because they are just way too cute! Now anyone that knows us, knows that the dogs are NOT allowed on the furniture. They are very good about not getting up but lately Cujo has been doing some sneaking. I have come home a couple of times to find hair on A’s blanket. Well the other day I came in and he was sound asleep so I had to grab the camera…
Yesterday A had his two year check up with growth and development. The doctor that he sees is absolutely awesome and I always am happy to go and happy when I leave. He was very happy with A and the progress that he has had since he last saw him six months ago. Of course, six months ago he didn’t have his cochlear implant and that has brought him so much further.
The first thing that he always says is “so….brag about A.” I have gotten good but I admit the first time that I met him and he asked me I started crying.
I admire this doctor because he is honest and to the point. I was asking him his thoughts on ABR therapy and hyperbarics and he said “if it sounds too good to be true, than it probably is.” I am always looking for ways to improve A’s life and have done tons and tons of research into many different things that I would like to maybe try. However it is hard when some of these things are huge amounts of money and there is no guarantee that it will benefit him.
The power wheelchair was brought up again and it looks like he really will be going into one next year. I will be calling kidsability to get A into the seating clinic for this as well as trying to find him a suitable seating device for in the home. I am having a heck of a time with him now that he is older and wants to go, go, go. The only place here that he sits properly is his swing, however he is getting to the point where he is almost too big for it. With hip and spine issues with kids that have CP I have to worry about his posture constantly.
I told him that I really worry about the future and what A will be like. I always wonder if he is going to be the kid with CP but totally there and right on target with his friends or if he is going to be the kid with CP that is 15 but at a much lower age level. I know that he can’t tell me but I admit that is one of the things that I think about all of the time. That is the one thing that really sucks about cerebral palsy. The waiting game….
All in all it was a great appointment. I had a call the other day from his secretary to remind me about the appointment and to add more time because we would have to do the Bailey’s test. I was not impressed. I think that these tests to see where your child is developmentally are just crazy to do for a child that has cerebral palsy and is deaf. At the end of the appointment with him he said he would see us next year. I asked about the Bailey test and he said “nope, you are not doing it.” Right on!
We headed up to the NICU to see if one of A’s nurses was on, but of course no luck again. We haven’t seen her in a year! If you are reading this Marg, we try and see you all the time and miss you! We did get to see Joyce although A was upset with her for leaving him. hahaha
We really miss having Joyce around. She is absolutely amazing and one of the most caring, loving nurses that I know.
And now for my little man. As you can see the sickness doesn’t stop this kid from smiling!
Well I have received a few emails wondering if everything is okay and I just wanted to say yes! I was unable to use my Internet for a couple of days but I am all hooked up now! I had just over 100 emails and of course have missed writing in my blog daily.
So this week has been pretty boring anyhow. I still am not feeling the greatest. I went to the walk in clinic on Monday because of my ear and sure enough it was infected. I was started on antibiotics but have to say that I still cannot hear out of my ear and it still is irritating!
A is doing good. He has not caught my cold or anything! Thank God for hand sanitizer! He had his therapy with Monica (OT) on Tuesday and she is very happy with him. Being relatively new to A it is nice to hear considering she is just getting to know him. I was supposed to go to a parent group for children with special needs with my friend Vickie that night as well but we both weren’t feeling good enough to go.
Yesterday A had his teacher from the deaf school (Valerie) and I was irritated to no end! I don’t really know what it is with her, but I just can feel my blood boiling when she is here. I think I really need to look into putting it on hold with her until A is closer to getting into school. He also had Deb (AVT) come over in the afternoon to work with him. She was very pleased to see how much more interactive A is with his toys. He gets very excited lately with toys and really wants to play like a normal baby!
I also talked to her about him hearing certain things now. If you clap loud enough he will look and certain sounds I do he will look as well. She said it is learned behaviour and that he recognizes those sounds now. This will help when he gets his implant because he will at least have some sense of what sound is.
We also did a testing scale for A because of what I was told at his appointment last week with the specialists in London. The doctor was pretty much dead on. A has all of the requirements in the 1-4 month range and a few in the 4-6 month range. Definitely opened my eyes to where he “should” be and where he is. We have to take into account his hearing/seeing obviously so hopefully once he gets his implant we will be able to see all of the 4-6 month boxes checked and higher.
So something new this week with A is his vomiting. He never used to vomit unless he was sick and it seems to be a daily occurrence now. It isn’t formula, but instead is thick/white mucus or bile. It is a bit concerning to me because of how often he is doing it and how much there is when he does. During the night I also hear him dry heaving a lot and gagging during the day for no apparent reason. In a book that I am reading I read that vomiting excess mucus can be the body’s way of getting rid of something harmful. It then goes on to say that the body is made to receive a diversified diet and that there is something called the “rotation diet”. It requires to use four different formulas and change them everyday from 1-4 and then continue. Interesting to read about since I have never heard such a thing. But if you think about it, it really makes sense. A has been on this enfamil now for 14 months. The first six months he was on breast milk. That is a long time to be on one formula that is concentrated to 30cals as well. So when I see his dietitian this week I will talk to her and see what she thinks.
Well tonight we went to the Storm game because they were playing the rival team London. Those are always great games to go to. Storm lost in overtime.