Saturday, February 16, 2013

Making Hard Decisions


It’s never easy when your child has to undergo a procedure, endure hours of Physical and Occupational Therapy, see multiple specialists or receive injections. As a parent, you have to be strong and confident and not only believe in the Doctors that you are allowing to care for your child, but you also have to believe in your child. It's hard making some of these decisions when he is so little, but it's things that his father and I believe will help him.

I have to continue to tell myself that everything we are doing for him is what NEEDS to be done and in the end, it will all pay off. I want to do everything we can for Alex so we can look back in twenty years with no regrets.

When Alex was three months old, he had to undergo an MRI so we could gain a clearer perspective of his CP. A head ultrasound was done when he was just four weeks old which is what initially showed the damage to his brain, but the scan was so vague, that we needed the MRI to tell us exactly what was going on. As hard as it was to hand my three month old son over to a nurse so she could take him back and “put him under” was like having him ripped from my arms. Seeing his little body on such a large bed being wheeled into recovery was even harder, but in the end the MRI was what NEEDED to be done to give us a clearer picture and better understanding.

When Alex was eleven months old, he started Physical Therapy three times a week. There were sessions where he would cry the whole time. My heart would ache for him, not because he was in any sort of physical pain, it was the emotional side of not understanding what was happening and why he had to go through such a vigorous workout. He wanted me to rescue him, but I couldn’t because it was what NEEDED to be done to strengthen his muscles and increase his mobility.

Alex has a handful of specialists he sees. I have discovered these specialists out there that I never even knew existed, and in order for us to continue to receive a special secondary insurance to help cover the medical bills, it’s who he NEEDS to see.

Last August, Alex received some injections in his lower legs to help the muscle spasticity. It was an all around new procedure for us, but I held him down as the Doctor injected him in hopes that it would give him some sort of relief in muscle tightness. As soon as it was done, I was there to comfort my precious son as the tears streamed down his face. It was a success even for just a short time.

Today we tried Botox injections on his inner thighs for the first time. It was a very low dose to try and help his muscles relax so when he stands his legs will be more open and not tight together, it is supposed to prevent him from crossing over when he walks and just overall help his tone. We are hoping for successful results.

This is a lot for a young child to endure and although not everyone is going to agree with the choices Eric and I make for Alex it is what we feel is NEEDED in order for him to come out on top. Not everything is going to work, but we would never put our child in danger. We always ask the necessary questions and try to do as much research as possible.

It's not easy making these decisons as a parent, but we aren't the type of people to sit back and do NOTHING. In the end, the most important thing is that we believe in Alex, love him and are going to do everything in our power to give him the best life we can. We are fully committed to doing that and we aren’t going to let anything or anyone stop us.

 
 
 
A little after thought….
     Alex’s picture was featured in a Euro-Peds presentation this week. I guess they had a really cute picture of him smiling in his gait trainer and couldn’t resist using it. We couldn’t be more proud.

 

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