I CAN'T HELP BUT SMILE

Sometimes for a family picture,

there's disorganization.....

.....and there's clowning around.....

And sometimes a bit of silliness.....

Once in a while..... a moment that is perfect.....

.....and if you're fortunate, maybe even two moments.....

And then.....

.....the fun begins.....

.....and the brotherly shenanigans start.....

.....and as they contemplate their next move.....

.....I just have to laugh.....

.....because they're my little boys.....

[she said as she shook her head and rolled her eyes in wonder]

.....and I honestly couldn't be more proud.....

.....honestly, not one bit more proud. 

Love you guys.

*The above photos were taken in October 2011, eight months ago. I am happy to report that since starting his new medication to treat Crohn's Disease & Ulcerative Colitis in September 2011, Blake has gained much more needed weight! Yay! I am also happy to report that Jon, my husband, has lost some not-needed weight! Yay! And since these photos were taken, I am happy to report that all the boys have learned to keep their shirts out of their flies. 

Humira.... So Far So Good

I don't know how authors can write so many books. Their words are always fresh and new. 

Unlike mine.

I feel like I'm saying the same old thing over and over again. Some days the words come, and other days, like today, I can't even think of an opening sentence! 

Guess that's why I don't write books. 

I wanted to update you on Blake and how things are progressing. 

Last Wednesday and Thursday the doctors tried to get Blake's pain and nausea under control after we were taken from the Emergency Dept at Kingston General Hospital up to Room MSSU9 on Davies 5. 

They had decided that Blake would begin the treatment of Adalimumab, also known as Humira to fight his Crohn's Disease and Ulcerative Colitis. 

It's a drug that will be injected, as opposed to an infusion, such as he received with the Remicade.

We figured it was going to happen on Friday, but Thursday, September 22nd around the supper hour, nurse Johanne walked in with a handful of needles. 

The first dose of Humira calls for a quadruple dose. Four needles, each containing 40mg of a hopefully healing medicine, were injected into Blake's abdomen. 

I think because of the fact that it all happened so quickly, we didn't really have much time to mentally prepare. We were getting geared up to receive the meds on Friday, after we talked a bit more with the Specialist. However, the nurse showed up with the medication all ready to go. The pharmacist had delivered it personally to the nurse's station because of it's extremely high cost.

So.... four separate needles containing Humira were injected into Blake's abdomen.

After the injections, the nurse indicated to Blake that she would return in ten or fifteen minutes to re-check his vitals. I watched Blake closely for any signs of reaction. He seemed very calm, yet distracted. I asked if he was alright, he indicated yes; however, I knew he wasn't. I said, "Are you sure?", and the dam broke loose.

I think all the stress and the sick-and-tiredness of being sick and tired was just too much for him. 

The more you learn about all these drugs and their side effects, the more overwhelming things can become. The unknown can be extremely frightening sometimes. Suffering from a chronic disease is scary. 

After we had our "it's gonna be alright" hug, the nurse returned to re-check Blake's vitals. Everything was good. There were no reactions to the new medication and I felt a great sense of relief, hoping that the medication would begin to heal my son's intestines. 

Blake put in a good night, with the nausea disappearing and the breakthrough Dilaudid pain meds not having to be used. Friday was a good day for Blake. He was still taking 2mg of Dilaudid every four hours, but his pain was less, and I noticed his complexion was clearing up again. I don't know if the clear complexion was from the Humira starting to work or if it was because they had increased his Prednisone to 50mg while in hospital.

By Saturday his pain was much better. When doctors pressed on his abdomen, he felt no pain at all! Amazing!!! So at his 2pm dose of Dilaudid (hydromorphone), Blake asked if they would cut his dose in half. 

The doctor said they could do that, and if all went well, he could go home that night. 

Whooooooa up here, dude!!!!!! 

I was NOT in favour of THAT!

I let my concerns be made known to the doctor, indicating that I did not want Blake sent home so quickly after cutting his pain meds in half. I explained that we have brought him home from hospital before, only to have him experience pain and need to return again. I respectfully suggested that perhaps it would be best to keep him a few more hours until Sunday, to which he kindly agreed. 

Whew!

So Sunday morning proved to show that Blake was well on his way to better days. After a surprise visit from my Uncle Graham and Aunt Dianna, we collected our prescription notes and said our goodbyes to our wonderful nurse (one of many terrific staff members at Kingston General Hospital) and also to our roommate, David, who very kindly coloured me a pretty picture from his Smurf Colouring Book and gave it to me to keep. 

The ride home was a little uncomfortable for Blake, so he experienced some discomfort that night. But as each day has passed, his health is getting better and better. 

I have spoken with the representative who is looking after the Humira. Blake will be receiving some "Compassion Doses" until our funding is once again approved and in place. 

We see his Specialist on October 7th. At that appointment, we will discuss what's been going on with Blake's health, and   he will receive his second dose of Humira. Blake's second dose will be a double dose totalling 80mg. Then the following dose, and all future doses, every two weeks, will be single doses at 40mg.

Blake will learn to administer this drug to himself, which will be a good thing for him when he returns to university in New Brunswick, likely in January 2012 if his health continues to improve. 

Today, Wednesday, he seems stronger. He has fuller cheeks on his face, due to the Prednisone; but it's just good to see his face not all sunken-in.

He is currently racing the clock to submit an assignment and finish an online quiz for his online courses. He had forgotten all about the one-hour time difference from Ontario to New Brunswick, so he's trying to beat the clock. It's now one minute after the hour and I haven't heard him scream yet; so hopefully he got everything submitted on time. 

I have a couple of pics from the hospital, but Blake gets so annoyed with me when I take pictures. I told him someday he'll want to look back at them, but he's putting up a fuss, so I might wait a bit before posting them..... just to see if he changes his mind. Of course that would involve me transferring them from camera to computer, which seems to take me FOREVER to do! 

Because my eyelids are getting heavy, I shall bid you adieu for this evening and will hopefully take some time tomorrow or Friday to update you on my sister. I've been very lazy this week after running from hospital to hospital, so I've been slack on reporting the wonderful news of her special gift. Maybe I'll get the pics loaded up for that blog post! 

Sorry this was a "yawner" of a post. I can only hope I get back into the swing of things soon! 

Thank you to everyone for your prayers for Blake and our family. I appreciate it very much. 

Hello Once Again, Dear Hospital

And we are coming to you live once again from Kingston General Hospital! 


I brought Blake here to the Emerg Department late last night, actually more like the early wee hours of the morning. 


His pain over the last three weeks has never really gone away, but was controlled with some morphine. This last week has been a bit rougher with him needing regular doses as well as breakthrough pills to help keep the pain at bay. 


Yesterday involved a lot of pain and quite a bit of vomiting. He was weak and just couldn't keep anything down. We were hopeful to wait it out, as Blake's appointment with the Specialist here in Kingston was planned for today, Wednesday, at 3pm. 


However, as I watched Blake he continued to progress to a weaker state. I took his pulse and he was approximately 140 beats per minute. Way.too.high. I was told if he ever got to 150, he needed to be brought to Emerg. Close enough for me! 


We hit the road and arrived at KGH at a perfect time. We went straight through to triage and registration and then waited only about 10 minutes before entering the Emergency Room. That is FANTASTIC timing for Kingston! Usually that only happens in Picton! 


First they tried to get the pain and nausea under control. Then we went through a long line of doctors and interns and resident doctors.... each one wanting to hear the story of Blake's last two years in detail. That is the one thing that Blake hates.... telling the same thing over and over. I remember last year he looked at a doctor and said something like, "It's in my chart. You can read it there." 


Must remind him to mind his manners! [grin]


But it's understanding when you don't feel well. He actually just snapped a little at me a few minutes ago. The nurse brought in some medication (can't remember what it's called) that gets injected in your stomach. It helps to prevent blood clots. Blake didn't want it, but I 'suggested' he take it. I'm not gonna have even MORE problems from a blood clot all because he didn't want a little "ouchy" on his tummy.


He apologized afterwards. I've noticed he's very "short" lately, not only with me, but other members of the family. Even his Grandma! 


Whoa! 


Highly unusual! 


But understandable. 


Anyways, back to what's going on. While in Emerg last night, in the curtained cubicles, there was a gentleman who was an inmate. He had two police officers parked in comfy chairs at the foot of his bed. The poor guy was moaning from pain.


Being only about three or four feet from him with only a pink plaid curtain between us, I couldn't help but 'eavesdrop' that he had a hole in his stomach or bowel; doctors weren't sure yet which one. He was in so much pain. My heart was breaking. I so badly wanted to go and help. 


They were being wonderful with him, though, in trying to get enough pain meds into him to lower the pain. In mere moments he was rushed off to the Operating Room. I could hear them helping him to get changed from clothing to a hospital gown. Then I heard the officers' cuffs being re-attached to him as they clanged against the metal on the bed's siderails. 


That broke my heart. Even if he'd wanted to escape, he wouldn't have gotten far in that much pain. I know it's precautionary and routine, but still broke my heart. 


I don't know how things turned out because he, of course, was never brought back to the Emerg Dept. But I feel folks are in good hands here, so I'm sure he's recuperating here somewhere, under watchful eye! 


So, back to Blake. 


Basically it's the same diagnosis as before. Intestines are not blocked, but rather quite inflamed. Prednisone is being administered to get the inflammation down. Dilaudid is what is being given for pain rather than morphine. It's apparently a little more effective. 


Dr. Patterson, a Gastroenterologist, came in to see Blake today and confirmed he will talk with our Specialist, Dr. Depew, and we will see about starting Blake on Humira. 


I mentioned to Dr. Patterson that the only big medicines I hear being used to treat Crohn's Disease are Remicade and Humira. I asked him what the next med would be for Blake if the Humira didn't work. He simply indicated there wasn't one. We would possibly, at that point, have to look at cutting out a chunk of bowel.


Now, we have been told in the past that Blake did not have enough good areas in his bowel to leave (that all of the intestines would have to come out); however, Dr. Patterson said there was a good chunk of bowel that still looked good and could be hooked back up to the ileum without any problem. That was good to hear! 


But I am hoping that the Humira will be effective in treating Blake. That's what I will be focussing on right now. 


That, and the fact that SOMEONE in this hospital needs to bring ear plugs to Blake so he can sleep tonight..... the man in the bed next to him is the loudest snorer I have ever heard in my life!!!! His name is David. David is..... um.... large. And David is loud. And he seems half deaf, so everyone yells when they're in here talking to him. No rest for Blake tonight, I guess.


I know I've been all over the map with this post. I've had to do it in sections and also while dealing with a headache, so I'm sure it's all a mess. And although it's to give info to others, it's basically a journal for me to refer back to at any time. 


I will try and make the next posts more structured. [grin]


And a little more exciting. 


For now, that's it. Maybe we'll have more news tomorrow. I'll likely drive back home tonight and head back down here tomorrow. I need to sleep in a horizontal state tonight; can't do another night in a chair! 


Tomorrow maybe I'll have some time to post regarding a very special gift one of my sisters gave to a friend. We are at a hospital one-hour east of our home. My sister is in a hospital two-hours west of our home, in Toronto. Let's just say it involves a liver and a very giving heart.


So until tomorrow, I shall bid you adieu. Goodnight.  

Here We Go Again

Well, it's been a long time folks. But here I am again. Reporting from Blake's hospital room.


I have not been faithful in keeping the blog updated regarding Blake's health, which is too bad because I use it as a journal to record what's been happening. That way I can always refer back to it.


Unfortunately, I've been slack in that area. 


Blake's health over the last year has been somewhat of a small roller coaster. He has been receiving the Remicade treatments; but other than one dose, they've never lasted the whole eight weeks. 


In June of this year, we met with his Specialist and we explained that his health has not been all that great, as well as the fact that the meds lose their effect after the fifth to sixth week. 


The doctor did not hesitate at all to bump up the doses by two weeks, which we were thankful for! So instead of a dose every eight weeks, Blake would start receiving a dose every six weeks. 


In May of this year, his dose only lasted two weeks to the day. We thought perhaps it was just a fluke or a glitch. However, July's dose proved to be the same thing.


We contacted the Specialist's office; however, we were told they were on holidays until mid August and that we should seek assistance from our own doctor in our hometown, or if things got worse, we should go to our local Emergency Department. 


After calling our own doctor and discovering she was on holidays as well, we sought help from the Emergency Department. We basically explained that Blake needed something to help with pain control until we could see the Specialist a couple of weeks later. 


The doctor was wonderful and did not hesitate to give Blake some relief with morphine. 


The unfortunate part was that we didn't get enough morphine and had to seek medical attention from Emerg again the following week. The doctor on duty was my husband's doctor and was helpful as well in writing a script for morphine for Blake. 


We then saw our Specialist the next week. It was my suspicion that perhaps the Remicade was no longer doing its job; that Blake's body was starting to reject this drug that we have referred to as his Miracle Drug. 


The Specialist was concerned that perhaps there were other reasons for Blake's pain and suggested getting a CT Scan and then possibly a colonoscopy, depending on what the Scan showed. 


He also wrote a script for more morphine, as Blake's supply was once again getting low. 


Later that week, Blake's pain was increasing, requiring more morphine. Because the doctors were only writing the prescriptions for 40 tablets, Blake ran out. 


We tried to get answers from our Specialists office as to the results of the CT Scan, but after a week of calling their office, we were told they only had unverified reports and that the doctor would get back to us once he had a chance to review them.


So because we could not get answers from the Specialist, and Blake was out of morphine, we headed back to our local Emergency Department for more morphine.


Well....


let me tell you....


THAT was an experience. 


The doctor on duty, who is not well known for his great attitude, lectured us on how we should be seeking narcotics from our own doctors and NOT at the Emergency Department. We tried to explain to him that when you can't get in touch with your Specialists OR your doctors, what else do you do, he began to tell us how he doesn't know that we won't sell them on the street. 


Insert frustration here! 


We tried to explain to him that we were aware of how some people abuse the system and that the Emergency Department doctors have policies in place;  however, we wanted to know what else we were supposed to do when we already tried everything in our power to get the help from the necessary people. 


His attitude stunk and it quite tried my patience. He said he'd write the prescription "this time", but we should seek to get lots of repeats on hand because of the disease that Blake suffers from. 


Seriously dude???? What do you think we've been TRYING to do???? 


Sorry, folks. I know that I'm rambling on here, but it is so frustrating when you feel like you're beating the head against the wall. 


I can tell you that I likely will wait in the waiting room at Emerg and wait for a shift change, should that doctor be on duty again. I have no time for arrogant, head-up-their-own-butt people. Sorry. I know I'll likely regret writing that, but for right now it feels very therapeutic! 


So very early Sunday morning, 1:30am-ish, my Mom calls me. Blake had been staying with her and my Dad. She said Blake's pain hadn't let up for a few hours and she was concerned. Jon immediately said we would head to Emerg; however, we would be heading straight to Kingston this time to ensure he was admitted and cared for until the pain got under control and decisions were made as to future treatment. 


Arriving at Emerg at KGH, we were treated very well by the staff. They worked to get Blake comfortable and get his pain under control. 


Thankfully they decided to admit him. I'm wondering if the doctor at Emerg noticed I had brought bags already packed, expecting to be admitted. 


He kindly said that they would get his pain under control and he'd see about getting us admitted. [That's MY kind o' doctor!] 


Word shortly came back to us that he would be admitted and that an x-ray and colonoscopy would be happening before he was released. 


Over the next day or two, Blake saw many different doctors and specialists (none of them being our own specialist), all asking the same questions, all poking and prodding at his already-very-tender guts. He gets frustrated having to tell the story over and over and over to different folks. I remember at one point in 2009 or 2010 during one of our hospital visits, he looked at one of the doctors and said, "It's in my chart! You can read it!"


Blake's attitude has been, for the most part, pretty good over the last two years. But he has his days. 


I've noticed that since he's been on morphine, he's a little edgy by times. He always is prone to 'snap' at ME; but when his 'snarkiness' was directed to my Mom, we knew that he just wasn't feeling himself at all.


The x-ray that was done on Sunday showed some inflammation, but nothing too alarming. Rather than a colonoscopy, the doctors just performed a scope on Blake. They also took a couple of biopsies at the time. We have not heard any official results from that scope. Sounds like we won't hear anything until we meet with the Specialist in a couple of weeks. 


As of right now, they are treating Blake with morphine for pain, as well as giving him some Prednisone which helps to settle down the inflammation. 


Blake HATES the Prednisone. It throws his system off, in that he can't sleep at night. It increases his appetite, usually; however, his appetite has not been good since we've been admitted. Yesterday and today he's hardly eaten anything. He had to take a Gravol to settle his stomach about an hour ago. 


I know he's anxious to get home; however, I am quite content that he's here. It's too hard to get admitted to hospital, so once he's in here I like him to stay! 


At this point they are looking at sending him home tonight or tomorrow. They want to get lots of this I.V. Prednisone in his system to settle the inflammation of the intestines. 


Apparently we will see the Specialist in a couple of weeks, at which time we will discuss whether he feels the Remicade is still doing it's job, or whether we will switch to Humira. 


The side affects of these drugs is quite frightening; however, what else do we do? We are trying to watch the foods that Blake consumes so as not to aggravate his intestines; but sometimes even plain ol' water bothers him. I guess the trick is getting the intestines healed up first and then trying different foods. 


It's been two years and days like today I feel like we're right back at the start. There's so much to learn. I joined a Facebook page regarding Crohn's Disease & Ulcerative Colitis. Hopefully to read other's stories will prove to be of some benefit. 


Anyways, folks, that's about it for now. I know this was a long and rambling post; but so many ask us for details, it's just easier to post it all here. 


Your prayers and concerns for Blake (and our family) are greatly appreciated. We are thankful to be sheltered under the Lord's wing and surrounded by a caring bunch of family and friends. Despite the physical ailments, we are truly blessed. 


I will attempt to keep this blog more updated for those who have been asking. :o) 


Regular up-to-date posts are always on Facebook. Feel free to add me as a friend to stay up to date on Blake's situation at "Michelle Fraser Found".

Hot and Humid

It's hot and it's humid. 


They say today is likely the hottest day of the year. 


I am not doubting it. 


Came across two different comics today that I thought were hilarious. 


Enjoy.


And stay cool!!!! 

Jesus, Bring The Rain

Today the weather has been a bit wonky. 


Started out as a beautiful sunny morning with a nice slight breeze, just enough to blow the humidity around.


Then it quickly darkened up. The clouds rolled in and hid the sun. Then the sound of raindrops. And more raindrops.


A downpour of water. 

I went back to my chore, and when I looked out again, the sun was shining brightly. 


I listened and heard no raindrops, but rather the singing of the birds. 


I chuckled as to how quickly things change. 


A few moments passed, and the rains returned. Everything was drenched with water. 


Moments later, the sun peaked through again. 


I got a text from my youngest son. I needed to pick him up from work. He couldn't do his outside job in this rain. I told him it was sunny here, but he assured me it was non-stop rain where he was working.




Before we are finished texting, the rains returned here. I went out into the rain to get to my vehicle. 


I only got a few miles and the sun started to shine again. The edges of the ol' country roads showed pools of water collecting, creating big fresh cool bathing puddles for the birds. 


As I continued to drive, I thought of how the sudden change in weather is comparable to our experience in life. 


One minute we're enjoying the sun, soaking up it's warmth, basking in good times. 


All is well. 


And in an instant the trials, the "rains", come. We're not prepared. We don't expect it. We run for cover and just want to hide. We can do nothing about it but sit and watch and wonder "how long is this going to last!?". 


We all experience it at one time or another. Some more than others. 


But what happens when the sun comes out again..... you realize the little downpour of water was a good thing..... it gave the earth a drink. The flowers and plants appreciated it. The animals appreciated it. The rains didn't last forever; they were just here for a time. 


Same with our trials. They don't last forever. They may seem like they last forever. They may last a few minutes or a few months or years; they may last your whole earthly lifetime. 


I used to really dislike when I would hear people talk about how they thank God for their trials; how the trials made them stronger. I didn't want to hear about that. I wanted to hear how God could teach us to be faithful during the good and easy times!


Now, I'm realizing that's not really possible. Just like when you exercise.... it's not effective without some pain and effort. You don't build those muscles while lying on the couch eating potato chips.


And our lives are the same. We don't always learn much when everything is going along with great ease. 


I cannot tell you how much I have disliked the trials that we've experienced, in the last number of years most especially. And I cannot tell you how I really don't want to keep enduring them or go through them again.


But I can tell you that when I look back, I do thank God for them..... [did I really just say that?]... for they have taught me more about who I am, who I want to be. They've taught me who and what is important in my life. I've learned to appreciate the little things more.... the most simplest little things. 


Would I have learned all of that in the sunshine?  Not likely. I had to be out in the rain. In the downpour. Getting wet. Getting soaked. 


But the sun comes out again. And it's a richer sun. A brighter sun. A warmer sun. 

More rains will come. And the sun will not be far behind. In fact the sun is there, behind the clouds.


More trials will come. And the Son is there for me. Not behind a cloud, but He is there for me..... and in me... and all around me.... and through me.


And I'm slowly learning to understand the concept of "Jesus, bring the rain".

To Be Totally Truthful

After debating with myself on what I should write about, since I haven't posted anything for four and a half months..... yah, I know,.... sorry!, I thought I'd make this short and to the point....

...figuring you'd all get a good chuckle at MY expense.

This past Sunday, early evening, I was visiting "the little girls room" and made a shocking discovery.

I realized that unbeknownst to me.....

or anyone else (thankfully).....

all day.....

I had been........

uhhhhhh......

wearing my undies......

ummmmmmm......

inside out.

Now, is that not just totally embarrassing, or what!?

So isn't this a great way to get back into blogging? with total openness and honesty? (I know.... "too much information".)

Hey!....

at least they weren't on backwards!!!!