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Tuesday, January 16, 2018

It's that time again.....appointments

I am not sure why Winter is when most of his appointments have to occur but here we are yet again. We are picking up his new AFO's on Friday. February 2nd he has his yearly physical at the pediatrican and then February 26th he has the dreaded cardiology for his echocardigram. He also will need a dentist appointment soon and a wheelchair adjustment/parts order.

Brendan is becoming more decisive lately. I usually go over color options before we head into his casting appointment but for some reason I forgot. Katie, his orthotist, asked what color he wanted and he immediately exclaimed, red! I was impressed with his instant decision. Maybe he was already thinking about it before we arrived. I am slightly bummed we are back in AFO's after SDR but this type is necessary due to his crouched walking. We bought an ankle sport brace to use on his right leg while he works out. This allows him to gain muscle instead of the braces doing all of the work. I asked his orthotist if we could pay out of pocket for SMO's to use while working out and she suggested the sport brace instead. His left ankle is not as weak so he just wears it on one side.

I find the pediatrician appointment not very necessary although this time I may discuss a view things. I am thinking of having him try medical marijuana. I know this is a controversial topic but I have read many positive effects. Brendan isn't one to talk about or express pain. I think he has become accustomed to chronic pain. I don't want him to live a life in pain and cerebral palsy tends to cause more and more pain as they age. I have also read that it can help relax the body and help hips slide back into place. As you know Brendan's left hip is teetering on needing surgery. I have a lot more research to do but I want the script so I have the option once I am ready to make the decision. Feel free to leave comments on this subject!

It has already been 2 years since Brendan had his heart checked. At age 5 he had his Atrial Spetal Defect closed which has since (finally) healed nicely. However, we have also been watching his enlarged aorta. I was actually blindsided with this information a few years ago. We have only been to 1 heart appointment that I left happy and carefree. He has seen this doctor since he was 11 months old and apparently had always been watching his aorta but never told me. This may have been because I literally broke down hsyterically crying when I was told about his ASD. It was a very difficult time in my life and I had found out so many things were wrong with my baby. Something being wrong with his heart was the last straw. I apologized and was mortified but I could not control my emotions. Brendan is not one to receive good news regarding his body. Even after his ASD was surgerically repaired it had 'leaks' that we had to watch. 2 years ago was the first time in his life we were allowed to wait 2 years instead of 1 for an echocardigram. His leaks seemed to have disapeared and his aorta didn't seem to be a major conern.The doctor isn't sure if his aorta is actually enlarged or if it is a normal size for Brendan. I think since Brendan is so small for his age the charts may be off. He is 15 but far from the size of most 15 year olds. He is only 80lbs and only 4'10" so I often wonder if his heart doesn't match his body. I guess we will know more after this appointment since he has grown a lot in the last 2 years. I have put the fear out of my mind. I was told he would need open heart surgery to repair this or his life expectancy would be shortened to 35. I honestly can't fathom any of this and since the doctor didn't act like this was a definite diagnosis I decided to just give it time. The time has come.

This is our life. Sometimes I can't believe what we have been through when I write it all out. Being born at 33 weeks and losing oxygen has caused all of this. So many tears. So much stress. So many gray hairs!!!! But somehow we have made it 15 years. He is happy. I am still sane. I still can't think about the future becuase that seriously scares me to death so I continue to take this journey in life day by day.

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