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Best:)

Today John had a good day. We notice that you feel better, puts his face, his smile, hours of sleep began to recover ...
On Monday I spoke with his neurologist and agreed to wait to change the anticonvulsants. The only thing that increased drug is used to induce sleep (Eszopiclone), so you can sleep a little longer and rest. You can not sleep when the trouble starts! Increased seizures and it gets really annoying. But the question is: why can not sleep well? I know in part for his neurological problem, he never had a normal sleep rhythm. Usually at night is awake ... And I know that sometimes you have any pain or discomfort that does not let him rest, and spend hours trying to sleep. I get upset when I can not figure out what the problem!

On Monday we go to Rosario for the training of ABR, and we take it as a mini-vacation! All three need some time off, leaving the routine closure of our house! Change the air we'll do fine!
I pray that John's health care these days we'll be out (who wants to can join this order, and pray!), I'm a little scared out of their "bubbles ¨, but I want to enjoy these five days! Returning
tell the news. ¨

live under the care of God Most High, spend the night under the protection of Almighty God. He is our refuge, the God who gives us strength, the God in whom we trust! · Psalm 91: 1 and 2

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News!

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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Home.

week I think it was more difficult than last year.
This time Juan took 5 days to leave the respirator, but again could do so thanks to God!

I keep wondering what is happening in the body of John, why these episodes are repeated so often?
And I know the answer. To John, grow it plays against.
And what I can do this? How I can help? I have to give up? He is serving as something ABR?
The threat of re-use in-home respite is latent.

yesterday after talking to the doctor I was thinking a lot about all this. And I came to a conclusion. It's time to deliver this new phase of John's life over to God and ask His will. I can not do otherwise.
not want to live in fear and counting the days until the next hospital, I live day by day. Today John is fine, happy and peaceful. I think about it without worrying about what will come.
going to be hard? sure. Will be a daily decision. But is what I want.

° Only God gives me peace of mind, he alone gives me confidence. ¨ Psalm 62:5