Many people have loved and prayed for Antonio over the years. Out of all our children, he is the one that people constantly ask about. Today, I am going to finally type out the update many of you have been asking for. I have not written much about the details of his life because truthfully, it is hard for me to talk about and share. Not that I don't want anyone to know, just that it breaks my heart and we are in the midst of it all right now.
Antonio was born a 23 week preemie and survived. He has a lot of medical issues because of this miraculous beginning. He was a foster child his whole life and God brought him to us and he became our son when he was six years old. He has always been the sweetest and happiest soul. When he came into our lives, even though he was a lot of care, he was such a blessing. As he grew and matured though the years, he spent his time praying for others. His heart is so kind and compassionate. His body has slowly grown into a man but his mind is still the mind of a four year old. I had never heard him say a cross or mean thing in his whole life the whole time he was growing up. Even though he can not do very much at all physically, he is so helpful with the younger children and loves to watch them play and will call to me if they do anything they should not be doing. We adore this young man. I say all of this to paint a picture of our son we love and cherish so much. To show what he was like, his true character, for most of his life...to compare to what his days are like now.
Antonio has Cerebral Palsy. His is very spastic in all four limbs. The tone is so tight that he can not functionally use his limbs. It is so tight, that as his body grew, the constant pulling of his tight muscles warped his bones as they grew. It is so tight, that he has discomfort and pain in his joints and limbs. When he was young, insurance paid for him to go to a physical therapist once a week to get worked on. They would slowly uncurl his fingers and straighten his wrists with gentle constant pressure. It takes a lot of hand strength to be able to do this. They worked on his whole body gently stretching him. He always felt better after a session. Tim and I also pay for a pediatric massage therapist to come to our home once a week to massage his whole body and straighten out all his limbs as well. Insurance will no longer pay for the physical therapy but we still pay out of pocket, for the therapeutic massage therapist to come once a week. For many years, from the time he was very young, we took him to the neurologist twice a year to get Botox shots, into his tightest muscles. To relax them and give him some relief from the constant discomfort, pain and spasms. They usually only injected his wrists and major leg muscles. The botox stayed in those muscles and the resulting relaxing of the muscles lasted several months. It did not make it all go away but did give him a small amount of relief. Enough to make it worth it.
When Antonio became an adult, we had to find a new neurologist. The first time we went for his botox injections all went well. On the second visit things went horribly wrong. In the days following his injections, Antonio became totally paralyzed. He could not even blink and could not swallow or protect his airway. Praise God for his feeding tube. His heart rate and breathing were very slow and he was non-responsive. I took him back to the neurologist and he said he had given Antonio the maximum amount of botox for his weight. No one had ever done that before and everyones body is very different. So we don't know if for Antonio's body, it was an over dose? If he got a bad batch of Botox? OR what really happened but all we know it that it did not stay in the muscles in which it was put and went through out his whole body. Antonio was like this for about three months and slowly regained his ability to swallow and such BUT... it did something else to him. Some how this toxin has done damage to or caused an imbalance in the chemistry of his mind. For the next year he would be a little better and almost himself for a few weeks and then for a month or so have a total personality change. He would sleep a lot day and night. Have dementia, be combative, bite himself, suffer from depression and say the most horrible things. He will yell out, scream, cry out and say horrible things all day long...It breaks our heart. If we try to talk to him or redirect him when he is going though these spells it makes them MUCH worse. These cycles are horrible. When he is going thru a bad spell he is much harder to care for as he fights us and we don't want to get hurt, him get hurt or us drop him. When he is going thru a good spell, he smiles and prays and is back to being the sweetest soul. This has went on for over two years now. We have tried everything I know to try and prayed and prayed. I research often about what we can do or try.
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| Antonio was going though a very hard spell during our vacation. It was a struggle for him to smile and I have only a few pictures of him smiling after taking dozens of pictures with him trying. You can tell in the above one he is tired and distressed but trying to smile for me. |
Recently, someone mentioned amino acid therapy. We tried one and praise God so far it seems to be helping. It is God and a miracle the difference it has made but he is still having bad spells. They are just shorter and not as bad. When we first tried it he had the best and longest good spell yet. I can honestly say he was back to how he was before the Botox tragedy. That wonderful three week spell was followed by five horrible days but he was not as bad as the spells of the past two years. It was the shortest bad spell he has ever went though as well. Usually, it lasts for at least a month or more. He is now on day two of a good spell.
I am grateful for our son. He is such a fine young man. It has been very hard, as his mother, to see him suffer so and go through this. It has been hard on all of us, not just to see him going thru it but because his daily care is so much harder when he is not in his right mind. Antonio can do nothing for himself. We have to lift him, shower him, clean and wipe him, diaper him, feed him, tube feed him... and all that is so much harder when he is trying to punch us, spit food at us and saying mean things. We know it is not him. We know this is mental instability as we know this young man and his heart. He knows too. He is so loving and apologetic when he is in his right mind and going thru a good spell. We give God all the glory, honor and praise for all the healing and progress Antonio has made. We are still looking for answers and new things to try to help Antonio. We are still praying fervently for his total healing, both physically and mentally and that our sweet, sweet, young man will feel and be well, in all areas of his mind and body.
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
I pray everyone is having a great transition from summer to fall. May God pour out His peace, strength, healing and direction into your life as you live and grow in Him.
Blessings,
susan
