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Cardiology Follow Up and Eye Appointment

Well we have had an extremely busy last couple of days. Today we went to our children's hospital about an hour away. Wysdom first had an eye appointment. His eyes cross and shake, so we have been doing patching for a long time. We switch eyes depending on how his eyes are responding. Normally we patch for about 45 minutes and that pretty much is not fun, because Wysdom can pull it off in a second and he does so. So we went last month to check his eyes, but he would not cooperate so we came home. So this time he still did not want to cooperate and what I mean by that is that he won't open his eyes, and he is actually strong enough to keep them closed.

Needles to say they had to use some equipment to keep his eye lids open. Can I just say that I DID NOT LOVE THIS AND EITHER DID WYSDOM. If you have ever had this done to your child, I am sure you agree with me. It was hard for me to watch. I mean it only took a short time, but I couldn't handle it so well. Shed a few tears, maybe more than a few in the office. Verdict is that we no have to patch his eyes for a total of.....4 HOURS. Ha. I will let you know how that goes. I am going to have to figure out some contraption for his patch. We are trying to get his brain to use both eyes the same amount of time. Right now he uses his right eye and his left eye is weak. When they are balanced the we can go to surgery to try and fix the crossing.


Next....

We went to our Cardiologist appointment. We had an echo done at Sick Kid's about a month ago. We also had one done today too. This was a big appointment and I am glad to say that all has stayed the same. This is the best news ever!!! He still has a leak both on the right and left side of his heart and some narrowing on the right that they will watch. However all is okay now, We just have to do a "holter" not sure it that is the correct spelling. The contraption that they wear to monitor their heart beat. Once we do this we are not looking to go back for a YEAR!!!! I can not tell you that I am so relieved.

We still have a sleep study to think about as Wysdom is not sleeping well. So it might be a lung issue, or ENT issue.
I will keep you posted. All in all it was a busy day and Wysdom did his best. He was cried for a good portion of the day, and was happy to come home.

Next stop. Last RSV shot of the season in the morning. Oh boy he is not going to be loving this.

Look at this handsome face!

I love this little face. I could just hug him up all day. I will show some more pictures of Wysdom and some new ones of Blyss as well. Things are going well. We got a new Pedi this week (thanks to my mother's group for supporting me and giving me a little pep talk in this area) My new Pedi seems great and she did a very detailed history of Wysdom's history this week.



We are pretty busy as per our usual schedule. This week coming up we go to an eye appointment and a (Yikes) cardiology appointment. Of course I am nervous for the cardiology appointment as we get the results of Wysdom's echo. For those of you that are new to this blog, Wysdom has open heart surgery at 6 months of age for an AVSD. He has been doing awesome since with some minor leaks in his heart. We are keeping our fingers crossed that we will have good news on Tuesday. That things have stayed the same or got better would be great news.

As per the feeding Wysdom is doing well taking our blended puree that we make at home. We are going to start with textures and reintroduce it to him as well as flavours. Hoping that he enjoys these new elements into his meal time. We are barely using the g tube and we are hoping to get it removed in the future.



Hope all is well with everyone. Sorry this post is short...but I am up late and very tired.

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.