It happened time and did not write more about the state of John! Is that I have trouble finding the time! So much to do!
September was a month of changes.
On the one hand, the neurologist changed to John one of his anticonvulsants, looking slightly reduce the number of seizures they have. (For those who do not know John has many seizures . On a typical day can have 14, but seriously, this means that counting all movements for a total of more than 180. A lot.) The change was Levetiracetam Zonisamide by also receives years Topiramate.
It's been two weeks since we arrived at the maximum dose of new drug and we have not seen any positive change, however, gives the impression that seizures are increasing, not only in quantity but also in intensity . But still do not want to take any action. If you notice the neurologist that I see, you'll want to add another drugs and do not really want. We reached a point where we tried everything and nothing will stop the spasms. I do not think the solution is to keep adding drugs that affect above all other aspects.
For now I'll wait a little longer. These days were difficult for John because he did not feel well, she was vomiting and sleeping very little and nothing, not that is what is wrong, sometimes I realize how hard it hurts, for more insight you may have and even though I know so much!
of the respiratory is pretty good! Mucus, the usual.
After the last hospital I decided to keep ¨ ¨ at home ... Just go out to the sidewalk when the sun is nice, no friends or family gatherings. If this is not going to prevent disease, some think it's wrong! but only we know what suffering Juan when sick. I also want to get well enough to go to Rosario the first days of October, because we have a new assessment and training of ABR ( Rehabilitation Biomechanics Advanced).
Other minor changes: We're out
occupational therapist. It is difficult to find a person that works well and not put pressure on John, that respects their time and their desire ... We changed
placement firm home. Many will know that behind these companies are people of all kinds, usually seek only economic benefit regardless of whether patient care is appropriate. It is a cruel reality and a struggle on our part, the parents, to respect our son's life and meet their needs.
Moving on ...
I want to dedicate a line to a girlfriend John called Coni. She travels to Spain in a few days with her parents and Romi Maxi to begin a promising treatment ( Foltran Project). As a family
we wish them well, ask God to accompany them in this ¨ Journey of Hope ¨ and tell them we love them! and accompany them from here with a heart!
· You will have confidence, because there is hope. ¨ Job 11:18 (The Bible)
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