Hey all!
Funny how a guy has to be seated at 38000 feet to make the time to write a blog so those that care and support know what is going on. None the less it is the way it is.
The past couple of weeks has been busy and good. We've kept working with Ethan's meds and have finally gotten him off everything except Bacterium (preventive). Ethan and I plowed through a semester of P.E. in 3 weeks. It took us about 5 hours a day and gave us a good taste of what he might be able to handle for the next semester. He did great and it gave him just enough credits to be a sophomore this fall.
We met with the Mandeville High School last week and they did a beautiful job of hearing us as parents and taking direction from Ethan for his desires, limitations, and wants. He will be taking four classes next semester from approximately 8 AM to 1230 PM. All three classes are back in gifted and he will be working with the special services to get needed class notes and tests if he needs them read and any other needs he might have.
As we have come off the meds, stuck with a regular exercise routine we have seen his sight return to the only double vision (he can read) and we have seen the personality of Ethan return! This is so exciting. He actually was able to pin his brother the other day. Lol.
Last Thursday, we met with Make a Wish foundation and learned that we are heading to Alaska for his wish. This is the reason I am flying now. It is a strange feeling to receive such a great gift. We will be gone through August 5. We are all very grateful and excited by it.
We are thankful for this Alaska gift being granted but more importantly, we continue to be blow away from all the regular gifts from all of you! There is no possible way I could have taken the time that was needed to work with Ethan the last few weeks without out your support. There is just no way we could have happened. Thanks!!
Tuesday, July 29, 2014
Monday, July 7, 2014
Where we are at.
Hi all
I am going to backtrack a little in time to recap, however, at the moment the cancer is in remission and we are attempting to set your “new normal” going forward. This has been interesting to say the least.
Around June 29th, we took Ethan to the ER for symptoms we thought were related to his ear infection but turned out to be the side effects of taking too much Zophran (nausea med). During this ER visit they put him on Reglian a different nausea med. Remember his meds target the nausea in his brain(vomit control center) not the stomach cause the brain thinks he is sick even though his stomach is fine. This med really put him to sleep (18 hours a day) and when he was awake he wasn't. He would shuffle around with no energy. He had some friends over on the 7th (the day he got his glasses) and he was only able to stay awake for 2 about hours. He just couldn't keep his eyes open. This was and continues to be a sources of discouragement to him.
June 16th, I called the Doctor and said we need to do something about this and they changed the med to Granisetron also called Kytril. They also had us start using a Motion patch that goes behind the ear. With in 30 minutes of the placing the patch his eyesight blurred and he got dizzy. This is different than the other eyesight issues we have had where things were more double vision. After about a week of this we became aware that we were taking the meds wrong by only taking half of what we were supposed to. We corrected that where he was getting the full amount over and after 24 hours of this we tried to remove the patch for the next 24 hours to see if he could do without it and be able to see again. His eyes and the dizziness cleared up within 12 hours, but the nausea returned. After the 24 hours of testing we let him decide if he would rather the bad eyes of the increase nausea and he choose to have the patch to feel better.
So we really don't have a handle on all this yet and will try taking him off the Kytril this next week and see how he does with just the patch. He still has to take Benedryl at night to sleep so we are going to try melatonin. This is what your brain produces at night when you get sleepy.
We have started a good daily routine here I wake him a 9 and we go for a walk every morning after breakfast and settle into homework shortly after that. With his eyes blurry he cannot read so I have to do all the reading for him. We finished up PE last week and not sure which course we start next week. The school here has been wonderful to work with.
Tuesday the 8th we get his port taken out! This should be the final hospital procedure! We are very excited!
Thanks again for all the support we could not do what we are with Ethan without it.
I am going to backtrack a little in time to recap, however, at the moment the cancer is in remission and we are attempting to set your “new normal” going forward. This has been interesting to say the least.
Around June 29th, we took Ethan to the ER for symptoms we thought were related to his ear infection but turned out to be the side effects of taking too much Zophran (nausea med). During this ER visit they put him on Reglian a different nausea med. Remember his meds target the nausea in his brain(vomit control center) not the stomach cause the brain thinks he is sick even though his stomach is fine. This med really put him to sleep (18 hours a day) and when he was awake he wasn't. He would shuffle around with no energy. He had some friends over on the 7th (the day he got his glasses) and he was only able to stay awake for 2 about hours. He just couldn't keep his eyes open. This was and continues to be a sources of discouragement to him.
June 16th, I called the Doctor and said we need to do something about this and they changed the med to Granisetron also called Kytril. They also had us start using a Motion patch that goes behind the ear. With in 30 minutes of the placing the patch his eyesight blurred and he got dizzy. This is different than the other eyesight issues we have had where things were more double vision. After about a week of this we became aware that we were taking the meds wrong by only taking half of what we were supposed to. We corrected that where he was getting the full amount over and after 24 hours of this we tried to remove the patch for the next 24 hours to see if he could do without it and be able to see again. His eyes and the dizziness cleared up within 12 hours, but the nausea returned. After the 24 hours of testing we let him decide if he would rather the bad eyes of the increase nausea and he choose to have the patch to feel better.
So we really don't have a handle on all this yet and will try taking him off the Kytril this next week and see how he does with just the patch. He still has to take Benedryl at night to sleep so we are going to try melatonin. This is what your brain produces at night when you get sleepy.
We have started a good daily routine here I wake him a 9 and we go for a walk every morning after breakfast and settle into homework shortly after that. With his eyes blurry he cannot read so I have to do all the reading for him. We finished up PE last week and not sure which course we start next week. The school here has been wonderful to work with.
Tuesday the 8th we get his port taken out! This should be the final hospital procedure! We are very excited!
Thanks again for all the support we could not do what we are with Ethan without it.
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