Blake's Health Update 2010/07/09

Wanted to give you all a quick update on Blake's situation before I head to bed.

Things are s-l-o-w-l-y starting to go downhill again. We NEED to get that next infusion of Remicade into him!!!

Our specialist's secretary called me first thing this morning to inform me she had indeed let one of Blake's doctors, Dr. Beyak, know that his condition is worsening again. She confirmed that Blake IS on the Urgent List, but it may be next week before he gets in. [Grrrrrr]

She said, "If you DO get a call from Admissions to come in on the weekend, are you okay with that?... because you will not get treated on the weekend." I said, "If it gets our foot in the door quicker, we will be there as soon as they call us!" She confirmed that was a good idea. She said some people do not want to spend the weekend in the hospital just waiting around. MY personal feeling is that we should grab a bed as soon as one becomes available! So she said she'd be letting Admissions know that we will come at any time.

Blake has had a quiet day. He spent a bit of time with his cousins this afternoon, but has just been resting this evening. He has discomfort in his abdomen, and is experiencing some back pain by times. I think this is all coming from his intestines, as the back pain stopped after the Remicade dose two weeks ago.

Please pray that a bed becomes available and that Blake is bumped up on the List. We need to get that next dose in him A.S.A.P. I can't believe how things turn so quickly. He's still eating, which is a good sign; but once the pain returns, it will cause nausea, and then his desire to eat will decrease.

At least the bowels still seem to be OK. That's a good thing.

I don't think the heat has been helping the situation too much either. At least we had some rain today which washed away some of the humidity. I would REALLY like LAST week's cooler temperatures to return! I have NO PROBLEMS with putting on a jacket in July. None whatsoever! But I simply CANNOT take this heat!

I will update more over the weekend and let you know how Blake is doing. Hoping to have a fun family day on Sunday afternoon to watch the big ol' soccer game with The Netherlands playing against Spain. Jake is home too this weekend from the big city. I'm hoping to get a relaxing weekend with my three boys. Jon and his friend, Charlie, are heading to British Columbia in the transport, so please pray for travelling mercies for them. At least they've got some air conditioning!

And while you're praying... if you don't mind me throwing one more request your way.... please pray for our nephew & his wife (Ray & Kelly) as they anticipate the arrival of a sweet baby girl any day now. Her due date is today, but no signs of the little one being in a hurry yet. Her Daddy says if she doesn't come by midnight, she's gonna be grounded when she finally does show up! haha. She's only got a few hours left, as they are on California time. Raymond, you just can't rush a woman.

I cannot believe I'm going to be a GREAT AUNT!!!!!! I'm waaaay too young for that! haha.

Thank you for remembering us in prayer, folks. Have a wonderful humid-free weekend.

Are You In The Fire Today?

"No weapon forged against you will prevail... " - Isaiah 54:17 NIV

If you could talk with the three Hebrew children about their experience with the Lord in the fiery furnace, perhaps they would describe it this way: The fire was all over us. Our robes were ablaze, yet amazingly, our skin was untouched. We had no idea what was going on. Then something moved among the ashes; we were not alone. Suddenly, out of the smoke came a shining, gleaming person! We never got His name; He never said it. He never said anything. But just knowing He was there brought such comfort. His presence protected us in the midst of the crisis. Now, we do not mean to say that the fire went out, or that the heat was reduced. No, it still burned, but the brightness of the flames was eclipsed by the brightness of His presence.'We never saw Him again; He showed up only when we needed Him. One thing is sure however, looking back, we are glad they dragged us from the presence of the wicked king into the presence of the Righteous One! In His Company we learned that, "No weapon forged against you will prevail. You will refute every tongue that accuses you. This is the heritage of the servants of the Lord."'Are you walking through a fiery trial today? If so, you are not alone - God is with you! Take courage! When He brings you out you will know Him better, trust Him more, and have something to say that will make others want to listen.

From The Vine (July 9, 2010)
"Are You In The Fire Today?"
The Word For You Today - Bob Gass

Thankful For..... Heat & Humidity?

It's been sooo extremely hot and humid here. I am NOT in my happy place. I know that we're supposed to praise God for all things, but I find it very difficult to be thankful for this humid weather. It's simply draining what little bit of energy I actually do have.

This week has been the week with the most sports events for Jared. SIX games in four days! Extra games were scheduled to make up for some cancelled ones from last week due to heavy rains. He's had three soccer games and three baseball games. Fortunately we were able to make it to all the games except one baseball game tonight. It was an extra game that conflicted with an already scheduled soccer game.

I do NOT know how those kids can play in this heat. They had water breaks, but still..... it was hard enough for us parents to WATCH them play, let alone actually run after a ball for well over an hour! Way to go, kids! You're amazing!

So this humidity has been playing some games with my joints. I have been bothered with some pain in my right leg, especially my knee, as well as my feet and my hands. There's no swelling, but the throbbing pain is terrible by times.

Blake was feeling some discomfort today with one of his legs as well. I really do believe it is the weather toying with our bodies.

However, I cannot blame the humidity on some abdominal pain that Blake is experiencing last night and today. And actually, pain isn't the correct word. Discomfort is what he is feeling. This means that the June 22nd dose of Remicade did it's job for two weeks, and now we need that next dose to continue the healing of his intestines. We are waiting for a call from the hospital to have him admitted. I confirmed today with the secretary that we are on the Urgent List. I made her aware of Blake's discomfort, and I asked her to let the doctor know so that we might be able to get the ball rolling a little faster in getting him his next infusion.

I think that I am quite over-tired this week because my brain is just not, well, working properly. I am feeling "out of sorts" and seem to have a bit of anxiety. I don't know why, but I do know that I do not like this feeling. I have sometimes felt this way, off and on, years ago; and it usually passes quickly. This time it's hanging on longer than I like. Maybe I've reached "that age". haha. So I decided I needed to just sit and do some reading and re-program my way of thinking.

I picked up a book that was loaned to Blake. It's called, "The Journey Home - Finishing With Joy" by Bill Bright. I am enjoying it.

Mr. Bright, who is now in Heaven with Jesus, suffered from an incurable disease called Pulmonary Fibrosis. He wrote this book, "The Journey Home", during his final time on this earth; and much of what he said in a particular chapter really touched me. I wanted to share it with you.

Here's what he writes:

"One day, my beloved [wife] asked me: "Why do you think you are suffering; why would God put you through this?"

Immediately, I sensed this reply in the Spirit: "I'm not suffering!" At least, it does not seem that way to me. Suffering is what our Lord endured. There is no comparison between what I'm going through and what Christ went through. He was beaten beyond recognition; He spent six hours suffocating on the cross; He bore the sins of the world; He was cut off from God because of our sins for there was no other way for man to be redeemed. The agony of the trial that had been totally illegal. Then you can think about Peter being crucified upside down. Paul's persecution and his eventual beheading. All the disciples were persecuted and finally martyred, except John, who, after being burned in oil, then was exiled on an island by himself. Through the centuries there have been many martyrs. For their faith in Christ, millions more have spent many years in prisons infested with lice and rats, suffering torture and deprivation of all sorts.

"How can I say I am suffering when I am here in a bed of relative ease? I am surrounded by people who love me; suffering is a matter of perspective. It is not pleasant, humanly speaking. All disease comes from Satan, but God allows only so much --- we can see those limits in the lives of Job, Joseph and others."

Romans 5:3-5 says: "We can rejoice, too, when we run into problems and trials, for we know that they are good for us --- they help us learn to endure. And endurance develops strength of character in us, and character strengthens our confident expectation of salvation. And this expectation will not disappoint us. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love." ..........

I looked at [my wife] and said: "We are most blessed; we are to look to God's grace, and oh, Father how great You are."

[My wife] told a friend nearby: "Bill has been filled with such praise. What a man."

But, dear reader, please know I tell this so you can know for certain that God is faithful to His Word and He is present with you to help you through whatever stages of difficulty you may face.

The Journey Home

- Finishing With Joy

by Bill Bright

Pages 38 - 40

What a blessing those pages of that book were to me as I read them. Although I am not suffering from an incurable disease, I could put my name in his place, and it helped me to put things in a better perspective. I could also put Blake's name in there, as he battles this Crohn's disease, and I could see how the same could apply to his own situation.

Sometimes I think we forget how good things really are in our lives. We have soooo much more than others in the world. And I am not talking about fancy cars and boats and luxurious houses and all the bells and whistles. I'm simply talking about a roof over our heads, food on the table, clothes on our backs, loved ones around us, and, for many.... good health.

We can be like Bill Bright and praise God even when things aren't going the way we'd like them to. No, it's not easy. But God didn't promise us an easy and fair life here on earth. But we can still praise God for the many things we do have, for the things that he daily provides, even for the air that we breathe.

Even for the humidity. Boy, I'm stretchin' it here! Sometimes we must praise God for things that we don't even understand, because somehow it all works into His plan. He is all-knowing. We are not. And if humidity plays a part in the bigger picture, then who am I to not praise Him for it?

So Lord..... I don't fully understand why, but I am praising You for this heat and humidity. You have a plan. Help us to bear it. You can somehow use it for good. Our suffering is nothing compared to Your's. Teach us to be truly thankful in all things and in all situations.

And thank You also, Lord, for air conditioners.

[grin]

Find Something To Praise God For

Find Something To Praise God For

"If there is anything praiseworthy --- meditate on these things." Philippians 4:8 NKJV

General Robbie Risner described the seven years he spent as a prisoner of war as "the essence of despair." He said, "If you could have squeezed the feeling out of the word despair, it would have come out lead-coloured, dingy and dirty." What's amazing is how he survived. He pried the cover off a floor drain in his cell and lowered his head into the opening. There he noticed a solitary blade of grass, the only smidgeon of colour in his colourless world. Calling it a blood transfusion for the soul, Risner began each day in prayer, lying on the floor of his cell with his head down the drain, focused on that single blade of grass.

Jesus said, "Your eye...provides light for your body. When your eye is good, your whole body is filled with light. But when your eye is bad, your whole body is filled with darkness" (Matt 6:22-23 NLT). What are you looking at? Each day you get to decide where you'll focus. And you won't have to look hard to find things to complain about: war, gas prices, the economy, global warming, and crime. God gave Adam and Eve everything they needed in the Garden of Eden, but they chose to focus on the one thing they couldn't have. He divided the Red Sea, sent signs to guide the Israelites in the wilderness and provided food so they'd never go hungry. Initially, "They...sang his praise. But they soon forgot what he had done" (Ps 106:12-13 NIV). Don't be like that. The Bible says, "If there is anything praiseworthy --- meditate on these things." Surely you can find something to praise God for today!

(above taken from The Word For You Today
by Bob & Debby Gass - Sunday, July 5, 2009)


Consider starting your own Gratitude Journal. For good tips on how to start, click here.

To check out my own personal Gratitude Journal, click here.

Now go and praise God for something!

No More 104

Thought you might like to take a peak at a very skinny young man.

Blake & Carley - June 27, 2010 - KGH - Davies 312
Photo compliments of Carley

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The above photo is of Blake and my niece, Carley.

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It was taken on June 27th, 2010 at Kingston General Hospital. I just had to snap this pic because Blake and Carley are approximately the same weight here.

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Now, if you know Carley, you will know that she is extremely petite. EXTREMELY. I tried to put on a pair of her shorts one day that were laying beside the pool, and I got them just up above my knees. That was it. I actually thought the shorts belonged to one of the five year olds. But nay nay, they were Carley's.

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So Blake was weighed on Sunday, June 27th and was 104 lbs. soaking wet! Basically just the weight of his bones. (Last Fall his lowest weight was 102 lbs. I didn't realize he was almost back to the same low weight!). Carley had mentioned that she normally weighs anywhere from 100 to 102 lbs., so I decided I needed a side-by-side photo.

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I wish he'd let me take a photo of his ribs and upper legs as well. It would be good for him to see it someday...... someday when he's healthy again and back to the proper weight. Right now he doesn't like looking at himself in the mirror because he doesn't recognize himself. He does not like what he sees. You can see how his collar bone protrudes in the above photo. I should've got a picture of his spine..... you can count every vertebrae!

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But here we are, almost a week later, and he has already porked on at least 11.5 lbs. He is feeling great, despite our little scenario with some joint aches at 3:30 this morning and a trip to the Emergency Department! (See post from earlier today.)

His afternoon and evening show him feeling wonderfully. He is so happy to be feeling good again. I wish I could meet the government officials looking after his file. If they could just meet him, they would do what is best for him, I'm sure. It will be nice to have everything finished.... we've been "fighting" for this for almost nine months!

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Anyways, I'm goin' to head to the rec room and "chill" with my boys after I put some laundry away. Just wanted you to see the pic of Blake and Margaret Carley.


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You Have GOT To Be Kidding Me!!!

Well, I was up at 3:30am this morning!

Blake was beginning to experience the onset of some pretty severe joint pain in his ankles..... just like last time, other than it was his knees before.

He also was feeling achy in his wrists and a bit in his upper arms.

We applied warm compresses on his ankles, but the pain just continued to get worse.

Before the pain got out of control like it did earlier in May, I decided to run him to Picton Emerg and get the morphine started, so as to keep the pain at bay.

As we arrived at Emerg, his pain level on a scale from 1 to 10 was at a 10 or 11. Within twenty minutes, it was down to a 3 or 4 and then diminished to just being achy. That was without any medication at the hospital.

The Resident Doctor appeared and I knew she looked familiar. Then she reminded me of where we had met. Back in May when he had this severe joint pain problem and Blake was transferred by ambulance to Kingston, one of the Resident Doctors at KGH was named Dr. Gustein. And lo and behold, look who is doing a four-month residency here in Metropolitan Picton..... Dr. Gustein.

It was soooo nice to not have to re-explain absolutely everything yet once again, as she quite remembered Blake's situation. At this point it was about 5am. She suggested we wait for a while to ensure the pain stayed minimal. She encouraged Blake to just sleep for a while and then see the Senior Doctor when he came in at 7am.

Blake had a lovely sleep all stretched out on that gurney.

I slept in the chair.

The hard chair.

With no arms on the side of the chair.

With Blake's fleece jacket and my fleece jacket rolled up into a ball to use as my pillow.

There was an extra flannel blanket laying on the gurney that Blake didn't use, so I covered myself up (because it was FREEZING in there!) and I lay my head on my "pillows" and nodded off.

[a-hem] I uncomfortably nodded off.

Now you'll recall I didn't get any sleep the night before because of Jon tossing and turning. See yesterday's post for twin-bed details!

I'm thinking on looking into a small portable cot. :o)

So at 7:30am Doctor Gustein came in and said that Dr. Beach suggested that, since Blake's pain had dissipated, we should make an appointment to see our own family physician to discuss seeing a Rheumatologist down the road.

I suggested that perhaps we just speak with our Gastroenterology team about this because we'll be seeing them next week (hopefully!) for Blake's next Remicade infusion. She said it was up to me.

I just think it's odd that twice Blake has experienced this and yet there are no patterns as far as medicines that he was taking during these attacks.

Last time he experienced this May 8th. He was not taking Remicade at that time. (His last dose of Remicade was March 2010). He had not started the Methotrexate at that time either.

This time he's not on Methotrexate anymore and he's had one dose of Remicade. If he was on the same med both times, I would consider that to be the link.

It's odd that he would have another viral infection. And why did the pain stop all of a sudden? It's been around 9 - 10 hours since he had the attack, and he's not experiencing any pain OR any aching now. What is going on???

There can be joint pain with Crohn's; however, the Rheumatologist checked this all out back on May 9th and felt it had nothing to do with Crohn's as well as not having anything to do with rheumatoid arthritis. So, we're kind of stumped at this point.

But I'm just thankful he's feeling better now. He's been fine since we returned home. He came home with an appetite and has been awake since we got here.

That's because he had a good sleep.

I didn't.

But it's not all about me now, IS it!

[grin] [wink]

So, we'll just continue on..... day by day. I've quoted this hymn before, but I'm gonna do it again... just part of the first verse:

Day by day and with each passing moment
Strength I find to meet my trials here.
Trusting in my Father's wise bestowment
I've no cause for worry or for fear......

One day at a time is how we'll get through.

And for me today, it will be more like one nap at a time.

Gee, that sounds like a refreshing idea.

G'night!

Blake's Health Update 2010/07/02

I am so completely whooped tonight.







I didn't sleep well last night.







Mr. Wonderful decided to toss and turn.... and then toss and turn some more..... and then, just for good measure, decided to toss and turn a few more times..... actually he tossed and turned all night long!







Needless to say, I did not get much rest. Being a trucker's wife, I am used to that. You get used to sleeping alone for many nights, and then when your loved one returns, it takes a bit of adjusting. Our "antique" bed is not the most sturdy, and just rolling over onto your side can simulate riding in a canoe during a storm in the ocean!








So today I've just been dragging my hiney. Add the fact that Blake and I drove to Kingston today for an appointment at the clinic. Don't get me wrong.... I absolutely LOVE driving; but some days it just drains me. Today was one of them. (And thank you to those who are now thinking that you should offer to drive us. But quite honestly, riding as a passenger tires me even more. I like the control!!!! hahaha)








Blake's appointment at Hotel Dieu Hospital in Kingston today was just a check up to see how he's been feeling since his release from hospital on June 29th and to see how the Remicade is working this time.





I'm happy to say that each day Blake feels better and better.





Today when we arrived, we spent a bit of time with a young woman named Sarah. She is quite involved in Crohn's research, and she has approached me to see if our other two sons, Jacob and Jared, would be interested in a volunteer study regarding Crohn's. Because Crohn's Disease seems to run in families, they are studying and researching to find links and patterns, etc. They would like to initially do some tests on Jake & Jared and then follow them for six to ten years and see what more they can find out about this disease. They will likely only need to call the boys by telephone once every six months for six to ten years and ask them questions (for example, what foods they eat, any problems with abdominal pain, how their "plumbing" is working, if they've travelled out of country, any other illnesses, etc.). Both boys have kindly agreed to be part of the study. I'm very proud of them for doing that. Even if it does nothing for them, it may help someone else down the road. And isn't that really what it's all about? So, thanks boys! I'm proud of you for doing this!





We then met with Dr. Ren, who is a resident doctor. As soon as she walked in the door, I recognized her. She came to see Blake in his room last week at Kingston General to see what was going on with the redness on his forearm. She asked Blake a bunch of questions (he gets soooo completely tired of telling everyone the exact same thing over and over and over..... he just wishes they'd read his chart! haha. But I told him it was good learning for the medical students and resident doctors, and perhaps one doctor will ask something that another one has missed. But I completely get where he's coming from!) Then Dr. Ren did a physical examination on him, and she seemed pleased that he was feeling better.





She left and then returned a short time later with Dr. Beyak, one of Doctor Depew's clinic partners. This was our first time meeting this doctor. He was extremely nice, and quite honestly I was not surprised. They've all just been great with us and made this entire situation so much easier to bear. Dr. Beyak had told Blake that he had been talking to Dr. Hookey regarding his situation. They have been brainstorming together to see what can be done to get Blake his next dose of Remicade next week. They mentioned a couple of scenarios, and if we don't get an answer from the government by the beginning of next week (which will be quite a miracle if that happens), then I am hoping one of their scenarios will come together for Blake to receive his dose.





Please pray that the Lord will open the doors for this Remicade dose, if that is actually the Lord's desire for Blake to receive it. I know that it's MY desire for sure! But the Lord knows better, and His hand is upon Blake, and so we'll trust that the Lord's ways are best. His ways are not our ways. He has the best plan already laid out. I just do not want to get in the Lord's way. So if it's His will for Blake to receive the Remicade next week, then everything should unfold to His plan.





Blake enjoyed spaghetti tonight for supper and had two helpings!!!! And then after that settled, he had a piece of Mrs. Smith's chocolate cake. It is so good to see him eating. His weight today at the clinic was 115.5 lbs. Way to go, Blake!!!! That's a weight gain of 11.5 lbs. in five days! Blake's colour has improved since the Remicade dose as well. His face is pink now! Not white! He's been this whitish-gray colour since we picked him up from New Brunswick on April 26th, so it's good to see pink. He just told me that his ankles hurt tonight, but today has been the most walking since his release from hospital, so I'm not surprised. I'll keep an eye on that, though, since we want to watch out for joint pain.





Also, the redness in his arm is gone. We'll continue with the antibiotic to ensure the cellulitis is out of his system, but I'm pleased it's looking better.





He and Jared have just hit the hay, and I'm thinking I should be following suit. Jake is home tonight! He and Jeffrey (a co-worker) came home for the weekend. I'm glad (mostly for Jon's sake, even though I'm happy to see him too). Jon is doing better, but was quite mopey yesterday for his Jaybo. He says he's fine, but I'm here to tell you that he is NOT! Jon is like a lost little puppy dog. I know he'll be fine once he gets back on the road, which will likely be Monday or Tuesday; but at least he's got his little buddy back home for the weekend. Jon & Jake are downstairs in the rec room and it sounds like they're chatting up a storm. Jon must be thrilled.





And Jake looked so grown up when he walked through the door tonight.





When did I get old, folks?????





Today I found a bunch of gray hair, I had dark circles under my eyes, and I thought my face looked like gravity had hit it hard. My legs and back are aching, and I'm so flippin' tired. And to top it off, I know I'm getting old because I want to replace my double bed with two singles so I can actually get a full night's decent sleep!









So could someone tell me when did I get old????





At 43 I should be in the prime of my life. So why am I struggling to even just keep going? Maybe it's just the mental stress of Blake's situation. I don't know.





But I do know I need to get to bed. Jumpins.... it won't be long and I'll be going to bed before 9pm!





Oh well. Everything else might be going downhill..... but at least I'm getting wiser the older I get.





At least I THINK I am.





Tonight I heard on the radio that you can get Alzheimers as young as 40!





FORTY?????





Oh my.





That explains a LOT!





And also, I heard that you can get Alzheimers as young as 40!





............





....................





hahaha.





That was a pretty good one, eh?





OK. I'm signing off and going to bed now...... if I can remember where my bedroom is.





hahahahaha..... on a roll tonight!





[wink]