He's All About Communicating.

Wysdom was described recently as being "communicator". He his signing, saying some words and just all around telling us what he wants. He is using lots of non verbal cues to communicate with us. We go to a lot of different therapy appointments and one of the great things for me is that they can help me keep on track. They help us use two way communication. So many time I just want to do things for Wysdom, or say what he wants, or I am in a rush and move around to quickly. I have learned that if I am always doing this how am I helping him? If I take my time and WAIT I can learn and lot about him and see what he wants.

So one of our therapist can over about 2 weeks ago and asked about him communicating. I talked about how he can do a lot of signs and how we are so impressed with this. She gave me some great examples of how to get to use more of the functional signs like help and open and then we set up the correct environment for a dialogue to take place. Low and behold Wysdom is bossing me around these days. (ha ha). He picked up on this right away and within a day was commanding for things to be opened or that he needs help and he is doing it with some flare. Not just a meek open, but I imagine his sign communicating OPENNNNN!

We truly are so proud of how he is doing. To be honest I don't compare him to other's and their speaking abilities. I am not sure why I have never done this, but it doesn't interest me right now. It may in the future, but now I am just happy with our little guy and all that he is doing, especially in light of all that he has been through.

We are still using Signing Time Products daily to increase his signing and ability to communicate. I wish I could remember the name of the mom that introduced me to the company. I believe in signing so much that I have started teaching my own groups. Oh yes one of my favourite signs that Wysdom does is SCARED !!!!!!! I will have to get that on video. I just love it

Other updates are that we went to an eye appointment last week that took the entire day and Wysdom did not cooperate. Meaning that when the Opthamologist tried to look in his eyes, he closed them as tightly as he could. Sooooo (can you hear the sigh) we go back in 2 weeks. In the morning we go to a physical therapy and occupational therapy. Then in the afternoon we pick up his new orthotics. Otherwise things are going well. Just really busy.

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Have a great week.

It's Echo Time Again

Well I am not going to lie. I am a little bit nervous about our appointment this week. We are heading out of town to get an echo done for Wysdom. We will leave at 7am to make it there for a 9:OOam appointment.

I am hoping for some good results. I feel like Wysdom is doing well. There was some concern at our last cardio meeting. Nothing urgent but just something to think about in the future. So we are going for the echo to make sure all is well. They will put him to sleep which is usually fine. We usually go to a smaller hospital, however they will not do an echo on Wysdom without putting him totally under with a breathing tube. He is seen as such a risk that they don't want to do it any other way.

So off we go to a larger hospital where they use a liquid to sedate him. This is much easier as it is just put in his g tube and therefore no tubes in his mouth. They did ask if I thought he would tolerate a different drug that would keep him awake, but just more relaxed. My answer was "Nope..he won't go for that" Really Wysdom has had a lot done and I think he would not allow anyone to touch him even if he was made more relaxed. Ideally this would be the better way. So we will see how it goes.

I did learn that after the age of 3 they do not put children to sleep so he will eventually have to get used to being touched as after 3 years of age he will have to be awake. For all of you that have never seen an echo done it is a painless procedure that is like an ultrasound but over the heart. It doesn't take very long...but to my little man it is awful. He doesn't tolerate a lot of things, and I can't blame him.

Then on Tuesday we go to make casts for his feet for orthotics. I am excited to get this done as I hope it will help Wysdom out. Oh yes and the good news is that he seems to like the Pony Walker. He has figured out how to move forward and is enjoying it so far. He does go on his tippy toes though. He is just so THRILLED to be able to move around. So we are really excited about this.

I will have to post a video of him in it as he dances to Hannah Montana or Justin Bieber. These happen to be my daughter's favorites, so Wysdom has no choice but to love them too.

Ps. Stay tuned for a contest on my food blog this week. If you want to get healthy or try some new recipes you will have a chance to win a great book.

Orthotic's Anyone?

Well it looks like we will be getting Orthotic's for Wysdom. We went to physio today and it seems that he has very loose ankles. (She said a lot more than that and a lot more technical) Anyways,I do know this to be true of course. I see it everyday. Wysdom is really not interested in standing to much. Well he is just starting to become interested. I always think when he is standing for a few seconds that his ankles seem really small and fragile. They also turn or he rotates them and only steps on a part of the foot. So off we go to get some support.

I really have not experience with Orthotics. I have experience with g tubes, but not this. So I am going to have to learn a little bit about them. From what I understand is that there are different types. AFO'S, KAFO'S, SMO'S, KO'S and probably a lot of other options. Our physiotherapist did mention that Wysdom would be getting SMO'S, I believe.

Hey whatever helps him move around seems like a good idea. I actually think that I will be ordering some hip helpers as well. Wysdom is so flexible in his hips and since we have no carpet in our home his legs are spreading everywhere.

If you have any experience in either of these areas I would love to hear from you and how it has helped or what challenges you face with this supports.