It has been a pretty good year for Tyler (relatively speaking). A very active 4 year old awaiting for a Fontan is a delicate situation. As much as Danny and I let Tyler live a normal life, he just doesn't feel good most of the time and it shows. His sats have continually dropped throughout the year (probably around 70's most of the time) and it has made it hard for our very active and lively 4 year old to live how his mind wants but heart doesn't allow. Knowing how to parent Tyler is difficult. It is hard to know if his behavior is a result of him running around and feeling crummy or just acting crummy. I am sure it is a combination of the two.
We have really tried to slow down with what we do, but it is still hard. He can either be the sweetest little guy to his brother and sister or a handful that tests all of our patience.
He has only been hospitalized twice this year which were the results of trying to get his Fontan, not heart issues, which we know is a great blessing. In August, his heart was too weak and in October, the surgeon wasn't confident in some of his team members. So we have waiting patiently and look forward to another date at the end of January. We hope that this will make him feel better and give him some of the energy that he needs.
As difficult as he can be, he is loved by so many. He has a unique spirit that people just love. He has so many people praying for him which we are so grateful for. He continues to teach us so many eternal lessons that we are so grateful for! He is a little man of many faces.
We are hoping that heart surgery will be a great way to start 2012.
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