He never needed surgery to put a shunt in and we were told that this is just how he was put together (his condition is called aquaductal stenosis or a narrowing of the ducts in his brain). So we thought we were good and that he would grow up to be a healthy, SMART little boy. Well both of those are very true, however we got the news in November of 2010 that Makary had Cerebral Palsy in his legs and although it is only in his legs it does indeed affect his whole body because he uses EVERY SINGLE muscle to move.
In 2013 we were told about this Selective Dorsal Rhizotomy surgery from Makary's CP doctor and I was so opposed to it until one night Makary asked me "Mom, when is my cerebral palsy going to go away?" And I responded "It's not going to go away, you will always have cerebral palsy. Why?" And he says "because I just want to run and jump and play baseball like Mason (Mason is his older brother)." So at that moment I realized that I needed to make this happen for him so I started doing research and then we had all these tests ran and I realized he NEEDS to have this surgery in order to have a "normal life" because every day this little angel, who is ALWAYS smiling, uses 400% of his energy to move. That is 4 times what the "normal" person uses!!! And why he gets so fatiqued so quickly when he has to walk anywhere. By the time he gets to be my oldest son's age of 12 the CP will have taken its toll on his muscles, bones and joints and he just won't have the energy to do much of anything.
So on June 11th, Makary will undergo a surgery called Selective Dorsal Rhizotomy (SDR) here in Chicago. This surgery is a neurological procedure that will reduce the spasticity of Makary's Cerebral Palsy. The spasticity is basically whenever he takes a step his muscles go into spasms and tighten up, which is why Makary pulls his knees in and walks on his toes and why he uses so much energy to walk or run.
The surgeon will open his back and test each nerve of the bilateral L1/Ss nerve root with electrical stimulation through EMG monitoring. He will need to stay in the hospital at Lurie's for 5-6 days (4 of which he will have to lie flat on his back) following the surgery. From there he will be transported to the Rehabilitation Institute of Chicago where he will start inpatient therapy 7 times a week and for several hours a day for minimum of 4-6 weeks. From there we will come home and he will continue his therapy here 3 times a week for at least 6 months but could be up to a year or two.
This isn't something that will change over night. He will need to strengthen his muscles and train his brain how to communicate with his legs and learn how to walk all over again using quality movements versus quantity.
How can I not give Makary this chance to be free and have the ability to be able to walk, run, and be a kid. If you could help Makary in anyway possible we would be FOREVER be grateful!! Please pass this on to anyone you think would be interested in Makary. THANK YOU!! God bless and that you for all your love and support!!
I have started a facebook page where you can follow Makary on his journey. It is called Makary in Motion - Makary's SDR Journey.
Love, Butch, Natalie, Mason, Mikayla and Makary Sekulich
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