Monday, December 12, 2011

Well I Guess it is Time for the Annual Update

Dominic and I have had a busy few days. Last Friday Dominic had an appointment at Sick Kids for an all day developmental assessment with Psychology there. This will find any learning disabilities, his IQ score and anything that may be making learning difficult for him. I am not sure they will find anything as most of his problems do seem to be connected with the Apraxia. He is slowly learning to read, but having a hard time writting down stories and sentences as he writes as he speaks, and no one can understand it. He also gets very mixed up with the numbers. He still gets the order mixed up a bit and can not read all numbers or write them down properly. We will see if this shows up as anything in this testing. An example of this is Dominic can mark 9:15 on a clock with the hands, but when asked to write down the time by looking at the clock, he can't do it. But he could tell you it is 9:15, he just can't write it down.

We do have some great news that will hopefully be able to help him at school. Dominic is getting an iPad provided free of charge. We applied to be involved in a study for children with Apraxia. This study is to see if the use of iPads can be helpful. We have to fill out a survey before he starts using the iPad and then another 6 months later. As long as we do our part the iPad is ours to keep at the end. I did not have a lot of confidence we would get picked as any child in the States or Canada diagnosed with Apraxia could apply and they only picked 40 kids. So we are very excited that Dominic was chosen. A lot of people were praying about it and God answered that prayer along with so many others in Dominic's life.

Today Dominic and I went to see Cardiology at Mac. Dr. Mondal says everything looks great. Dominic's oxyen sats are 93, not great but apparently normal for a Fontan kid. The Dr. did continue though by reminding me of all the things that he is at risk for going wrong and that likely will eventually go wrong. He said to watch for pressure changes which might show up as swelling in his face and legs. He said that his valve may start to leak more and if so may be able to be fixed. He said as he gets older sports will be harder and not to put him in anything too competitive, because he likely won't be able to continue in them. Right now Dominic plays soccer in the summer and is now dancing the rest of the year. Neither are done competitively, and so far he doesn't mind. He said he may get blood clots and for now aspirin is good, but as he gets older that he may have to go back to a stronger blood thinner. The doctor continued, but I don't remember a lot of what he said as he can be very hard to understand because of a strong accent. Basically I got that I need to be aware and if there are any changes in Dominic, get him seen. Well I already knew that!

These yearly appointments can be so draining even when they go well. It is just such a reminder or the reality of Dominic's heart. Most days you would look at him and have no idea there is anything wrong. On days like today, I see the blue in his lips and hear his heavy breathing and am reminded again of all we still have ahead of us. His future is so unpredictable, even more now then before the Fontan. Atleast before we knew what surgery was to come next, although we didn't always know when or if he would make it there. Now we just know that he is doing well, but things could change at any point. It could be tomorrow, could be 5 years from now or 20. We need to be thankful for everyday we have with him, just as we should we everyone we love. These children make us so much more aware of this.

Please keep Dominic in your prayers that his heart will continue to stay strong and that he will be able to keep up at school and get through the challenges he has there. He is such an amazing strong boy. His character quality that was chosen for him last year at his SK grad was Perseverance. He tries so hard and never gives up no matter how difficult things are for him at school. We are so proud of him!

Thanks for reading and praying,