Sunday, June 6, 2010

John slept for the entire night - and had a much better day today. Only needed extra meds once.
Had a very quiet day which was good for both of us. Because he slept in - I slept too - in fact fell back to sleep (between hourly meds) and did not get up early enough to go to church. But I feel much better.
Our grandson, Quinton, turned 13 today so it was good to call him and his grandfather was quite surprised at his deep voice!!! He tells us he is one of only 20 students in Kitchener to be chosen for enriched classes next year. Congratulations Quinton!!
Thanks, once again, to everyone who is upholding us in your prayers. I cannot tell you how much we appreciate it.
One thumbs up today.

Saturday, June 5, 2010

Another day - somewhat like yesterday. John had a hard time in the morning and all afternoon. The meds were just not kicking in at all. I gave him extras several times - meaning he missed several feedings. However, by the evening things seemed to level out and he was able to sit up in his chair and watch TV.
There was a jazz festival in the park beside our condo today. I had hoped we might be able to go over and listen for awhile. John loves jazz. We could hear it from our balcony and it sounded wonderful. However, he said he did not feel well enough to go over and take part in the festivities. Too bad, it was a beautiful day out and I am sure it would have been great sitting in the park and enjoying the music.
Margie and Jean dropped in after they had been to the park to hear the music. They had hoped John might feel up to going to the movies, but he was not up to that either.
However, with the meds working better during the evening, I will give this only  a one thumbs down kind of day

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Friday, June 4, 2010

John had a terrinle day today. He did not feel good at all. The meds were just not working well.
I cancelled his appointment for speech therapy because he did not feel well enough to go. It is an hour trip to Surrey hospital - which is where we have to go for this.
Once again I had to give him extra meds an hour after his scheduled ones, meaning that he went without several feedings that he should have had.
Talked to the neurologist's nurse today but she said that they could not think of anything else to do for John. There is a new med in Europe called Duodopa but it has not been approved for use in Canada yet - and it will have to go through trials etc. so it will not be approved any time soon. She was not encouraging.
The good news is that I did get the Roho cushion for John and it seems to be working better than the other ones we have tried. The bed sore does not seem to be it getting much better - but it is not getting worse either.
I have to give this a two thumbs down day

Thursday, June 3, 2010

The day started out fairly well. John felt good. However I was only at the coffee hour held here on Thrusdays for 15 minutes when he called me to come home and as the day went on, he got worse - in fact he missed two complete feedings because he had to have extra meds at the time he should have been eating. So he ended up taking only 4 cans of Jevity rather than the 6 he is supposed to have. Well at least it is still better than the one or two he was getting before the feeding tube went in.
May have found a Roho cushion (the $550.00 kind) second hand for under $200.00.  Will go and look at it tomorrow morning and see if it is what we need. He is very uncomfortable sitting for any length of time because of the bed sore on his tailbone. He also has a rash down one arm and I do not know what is causing that!!
Tomorow afternoon we have to go to Surrey hospital for a speech evaluation for him. They hope to be able to give him some speech therapy to help him speak above a whisper and with more clarity. It will be an exhausting day for him. But very worthwhile if there is a way to help him communicate easier.
All in all I guess it was a one thumbs down kind of day.

Wednesday, June 2, 2010

John had quite a good day today. Meds seemed to hold better. Felt good (well, good  for him) most of the day.
A few days ago he received a phone call from Myron Thompson, asking him for Tanya's hand in marriage. John gave his consent. So we have a wedding coming up - real soon - July 7th.
We are going to attempt to attend the wedding. We will fly from Abbotsford to Hamilton, thus avoiding large ariports. Our good friends, Harry and Lynne Inns will pick us up there and take us to their home in Brantford. We will stay with them, and they will take us to the wedding.
Lynne has a nursing background so will not be phased by our regime, I hope.
We will fly in July 2nd but have not set a time to come back yet- likely in about 10 days or so.
We are hoping some of our friends and relatives will be able to come and visit us in Brantford, as the only trip we will be making will be to the wedding in Scarborough.
Please do pray that John will be able to make the trip and attend the wedding and have a GOOD day, that day.
I think this day deserves a two thumbs up, don't you?

Tuesday, June 1, 2010

Another day similar to yesterday - maybe not quite as many OK times.
Still nothing from the neurologist.
So nothing much to report today.

Monday May 31, 2010

Not a bad day today. Bit of a roller coaster but John seemed  to have times that he felt OK as well as those when he felt lousy.
No returned phone call from the neurologist.
Had an important phone call today which he needed to give a "yes" or "no" to - but he could not make enough sound to do that so I had to say "he is shaking his head yes."

I have been trying to find a cushion for John's seat that would relieve the pressure on the area of his bed sore and prevent others from forming. Have tried out several but have not found one that really works well. Located one called a Roho cushion - I'm sure it would do the job -  but it costs $550.00!!
John was feeling badly at 10:30pm so I put him to bed. As I was writing this I heard a big crash - turned out he had decided he was feeling better and got up by himself but fell over. He did not hurt himself. He is supposed to call me if he wants up.  He wanted some ice cream which he is currently enjoying.
Well, I guess that last episode definitely made it a one thumbs down day.