Two weeks
Yesterday was another great day.
He felt great the entire day.....
slept in quite a bit and went to bed pretty early.
But between all of that, he smiled.
A few things came up with his positive cultures he had the other day, they had to switch to a different med because the bug is showing to be more resistant than originally thought.
Still, at this point.....not a huge deal.
Today started out quite the same.
He slept in rather late.
Woke up in a pretty good mood.
Felt great.
and then, in a moments notice.....he didn't.
The doctors had just left....
they had talked about how he was tolerating his feeds well, he was gaining weight and how impressed they were that he hadn't gotten sick.
It came on quickly and with out warning,
a comment about an upset stomach,
a scream from the pain......
and then vomit.
He puked out his feeding tube when he got sick.....not such a huge deal, except.....he needs a feeding tube.
Almost as quickly as it came on.......it was gone.
He felt better.
He didn't feel bad again until it came time to replace the tube.
The placement of feeding tubes is relativly awful.
He has it done every two weeks and it never gets easier.....
You cannot blame him for his anxiety......I cannot even imagine how hard it would be to allow someone to shove a long tube up your nose and down your throat....that would scare me, an adult.
His counts still aren't where they need to be,
they still haven't figured out the medicine situation for the infection......
but overall,
he is still doing great.
He is a little bit tired.
He is a little bit weird.....
He is a crazy boy....
He is still fighting this fight.....
like a champion.
It is day +14.
Two weeks out!!
and defiantly on the road to recovery.
Please never stop praying.
Please never stop believing.....
Parklen is going to change the world.
It has been a long time that I have been living this life.
Something I have come to realize over the years is this.....
hard times bring out the best and worst in people.
Rough roads will show you who your true friends are....
hard times will even reveal the best and worst of your family.
Going through difficulties will reveal the motives in people around you.....
I have seen some of the best friends I thought that I had, fall away......
I have made some of the best friends in the midst of my heartache.....
I have shifted the people I trust and rely on....
all based on my struggles.
When you come to a point in your life when you need help, it is hard.....but, I promise there will be a time......
nothing makes it easier to ask than having people that give with a happy heart.
Attitude makes all the difference.....in every situation.
Easy.
Hard.
Happy.
Sad.
You can change someones life with a simple smile.
You can better someones day with a gesture of kindness.
In the same way,
you can add to the stress.....
make them feel bad,
just by your attitude.
I hope to teach my children that asking for help is sometimes difficult but necessary, and you should always pay it forward.
........that lending a helping hand is one of the best and most rewarding things that this life has to offer........
To never make someone feel less than by helping.
Only help people if you can do it with a happy heart and a positive attitude.
As long as you have joy, your hands are full and you always have something to give.
I am so thankful for the people that God has placed in my life.
I am so thankful for the generosity that has been shown to my family....
I look forward to days of health when we can be the givers and bless others the way that we have been blessed.
God is good and he keeps pushing the hands on Parklen's healing clock!
The best is yet to be.
He felt great the entire day.....
slept in quite a bit and went to bed pretty early.
But between all of that, he smiled.
A few things came up with his positive cultures he had the other day, they had to switch to a different med because the bug is showing to be more resistant than originally thought.
Still, at this point.....not a huge deal.
Today started out quite the same.
He slept in rather late.
Woke up in a pretty good mood.
Felt great.
and then, in a moments notice.....he didn't.
The doctors had just left....
they had talked about how he was tolerating his feeds well, he was gaining weight and how impressed they were that he hadn't gotten sick.
It came on quickly and with out warning,
a comment about an upset stomach,
a scream from the pain......
and then vomit.
Almost as quickly as it came on.......it was gone.
He felt better.
He didn't feel bad again until it came time to replace the tube.
The placement of feeding tubes is relativly awful.
He has it done every two weeks and it never gets easier.....
You cannot blame him for his anxiety......I cannot even imagine how hard it would be to allow someone to shove a long tube up your nose and down your throat....that would scare me, an adult.
His counts still aren't where they need to be,
they still haven't figured out the medicine situation for the infection......
but overall,
he is still doing great.
He is a little bit tired.
He is a little bit weird.....
He is a crazy boy....
He is still fighting this fight.....
like a champion.
It is day +14.
Two weeks out!!
and defiantly on the road to recovery.
Please never stop praying.
Please never stop believing.....
Parklen is going to change the world.
It has been a long time that I have been living this life.
Something I have come to realize over the years is this.....
hard times bring out the best and worst in people.
Rough roads will show you who your true friends are....
hard times will even reveal the best and worst of your family.
Going through difficulties will reveal the motives in people around you.....
I have seen some of the best friends I thought that I had, fall away......
I have made some of the best friends in the midst of my heartache.....
I have shifted the people I trust and rely on....
all based on my struggles.
When you come to a point in your life when you need help, it is hard.....but, I promise there will be a time......
nothing makes it easier to ask than having people that give with a happy heart.
Attitude makes all the difference.....in every situation.
Easy.
Hard.
Happy.
Sad.
You can change someones life with a simple smile.
You can better someones day with a gesture of kindness.
In the same way,
you can add to the stress.....
make them feel bad,
just by your attitude.
I hope to teach my children that asking for help is sometimes difficult but necessary, and you should always pay it forward.
........that lending a helping hand is one of the best and most rewarding things that this life has to offer........
To never make someone feel less than by helping.
Only help people if you can do it with a happy heart and a positive attitude.
As long as you have joy, your hands are full and you always have something to give.
I am so thankful for the people that God has placed in my life.
I am so thankful for the generosity that has been shown to my family....
I look forward to days of health when we can be the givers and bless others the way that we have been blessed.
God is good and he keeps pushing the hands on Parklen's healing clock!
The best is yet to be.
Though we have never met, I just wanted you to know that you're not alone. I am a mother of an ALPS patient. I know how lonely and hard it can be to have a child who is so very sick and not have people understand his condition. I hope that his treatments are going well and that he improves in health and stamina. My little guy with ALPS just turned eight a few weeks ago and spent his first Halloween out of the hospital in years. He is getting stronger and healthier thanks to new (very expensive) medications and treatments. There were times when I never thought he would be able to lead a normal life for fear of germs and sickness, but he's come a long way. I pray the same for your family. (I can hardly look at the photos on your blog, it brings me back to more difficult times.) Hang in there! It was during those really hard times that I felt the love of God strongly in my life and in the life of my children. I really believe he doesn't give us more than we can handle. Your little guy is strong. God knows know him and loves him.
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