It has been about 3 weeks since I took Hudson to the E.R.
At the time I asked the Dr. to give him an antibiotic, but she didn't want to and I was told it would have to run its course. I wish some doctors didn't think they know my son better than me. He doesn't fit the typical mold, and running its course leads me to taking him to his PCP 3 weeks later for antibiotics.
You might think I am making a pot of coffee in the background of this video. No...it's Hudson's breathing....it's the gunk that has turned yellowish/green that is sitting in the back of his throat...I am certain it is the same stuff that has been brewing since we took him to the E.R. 3 weeks ago. He is choking on it, coughing, vomiting......seizures remain off the charts.
He is seizing through the night...early in the morning....it wakes me up, because he cries out....coughs....chokes....
This child endures far behind his capacity....he is a fighter....thank God!
As one can imagine....the only way I can really help my little guy is constant suctioning....sometimes I have to go back with catheter further than I would like to make him cough up the goo that is suffocating him.
He will sound better for a few, and then it build right back up again.
This is right after suctioning....
Between illness and seizures he is so lethargic.
He has been spending his days lying or sitting, but nothing else. I don't have it
in me to do much more with him. I canceled PT yesterday, I stayed home from work today....
one of the gals I work with.....her daughter came down with chicken pox 2 weeks ago....
none of my kids have the vaccine....and she would be there today with her kids...couldn't risk it,
I needed another week for peace of mind.
Praying I see a turn around now that we have Augmentin.....in return, I hope his seizures back off.
We did get the script written by his PCP for the Clobazam (never without a fight).....now I am waiting for the Canadian Pharmacy to call me and get my money so they can send it.....feels like the waiting game is endless!!!
I sure hope it is worth it.....poor Hudson needs some relief!
Tuesday, April 26, 2011
Sunday, April 24, 2011
Friday, April 22, 2011
Sharing Ella Mae
- Ella Mae Will Dance for Jesus in the Kingdom | Sermon Notes, Luke #71
- Over 400K Will Watch the Good Friday Film This Year
- Yes, We Will Be Live-Streaming the Easter Celebration at Qwest
Posted: 21 Apr 2011 10:18 PM PDT
In this week’s sermon, Pastor Mark told us about meeting Ella Mae, a young pastor’s daughter in eastern Washington. Ella Mae has spina bifida, but has always dreamed of being a ballerina. When Pastor Mark mentioned this in an early sermon, a young woman who was in the service and is a ballet dancer with the Pacific Northwest Ballet came up afterward to say that they would love to have Ella Mae come meet all the ballerines next time she was in Seattle.
So Pastor Mark wrote her dad to let them know the good news. This was Ella Mae’s reaction, as told in her dad’s reply:
Dude. Huge. I don’t even know what to say. I read your note to her this afternoon. Ella Mae’s eyes got big and she exclaimed, “Really??!! Truly? I get to meet a REAL BALLERINA? Mom, Mom, guess what Pastor Mark did for me!” Oh man, I should have videoed it … it would have put gas in your tank for miles. Her face was priceless. Good stuff.Read Pastor Mark’s full story about Ella Mae in this week’s sermon transcript.
We’ve sometimes wondered whether or not we should “encourage” the whole ballerina thing, for obvious reasons. And then I overheard her telling Levi a couple days ago driving home, “Levi, do you know what will make heaven so wonderful?” “What?” he said. “Heaven will be wonderful because there won’t be any walkers, braces, wheelchairs, or Spina Bifida, which means I’ll finally get to run and play with you like I’ve always wanted to do,” —said in her excited voice, as only she can— “and I’ll be able to dance for Jesus too. He’ll love it. He’s amazing you know, and he really likes ballerinas. I can’t dance now because my legs don’t work, but he’ll fix them in heaven, and then I’m gonna dance my heart out. He can’t wait to see me dance.”
Word for word, from her mouth. My eyes watered and I almost drove off the road.
So bring on ballerinas. One day, here or there, my daughter’s gonna dance. So thanks for blessing our family with this gift. It’s a little like Christmas in April. Seriously, we’re overhwhelmed, humbled, and grateful. God is so good.
Tuesday, April 19, 2011
too many seizures for one little boy
I wonder if in his little life, if we will ever see a day without a seizures.....
there is no break
there is no rest
he battles daily....
we try to put on battle gear (his meds)...
but it all just crumbles all around us....
leaving him completely defenseless against these monsters....
I wish I could see a glimpse of who Hudson is...
without his seizure saturated brain...
without a mushy body....
without trouble swallowing....
without a g-tube....
without debilitating drugs that put him in a fog.....
without this thing called mitochondrial disease.....
I wish I could hear his voice.....
would it be raspy, soft, loud, sweet?
I long for a belly laugh....or even just a giggle.
I wish I could be the one to figure out how to lift the fog that surrounds....
to find answers....
to help a little boy that I absolutely adore...
I would give up everything....including living....to see him live....
to let him have every opportunity of a life he so deserves.
I hate seizures.
I hate what they do before, during and after their attack.
They are like a thief in the night....
they stalk my son on a hourly basis...
It is choking me to see him seize so much....
and yet I can only imagine what it feels for him...
to go through endless seizures for the last 3 1/2 years....
daily...
too much for such an angel....just too much.
grab the tissue box....
I just read this on another blog for the first time....
I am the Disabled Child
I am the child who cannot talk.You often pity me. I see it in your eyes.You wonder how much I am aware of...I see that as well.I am aware of much...whether you are happy or sad or fearful,patient or impatient, full of love and desire, or if you are just doing your duty to me.I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do.You cannot conceive my isolation, so complete it is at times.I do not gift you with clever conversation, cute remarks to be laughed over and repeated.I do not give you answers to your everyday questions,responses over my well-being, sharing my needs,or comments about the world around me.I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself.I do not give you understanding as you know it.What I give you is so much more valuable...I give you instead opportunities.Opportunities to discover the depth of your character, not mine;the depth of your love, your commitment, your patience,your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you ever go on your own,working harder, seeking answers to your many questions,creating questions with no answers.I am the child who cannot talk.
I am the child who cannot walk.The world sometimes seems to pass me by.You see the longing in my eyes to get out of this chair,to run and play like other children.There is much you take for granted.I want the toys on the top shelf.I need to go to the bathroom...oh...I've dropped my spoon again!I am dependent on you in these ways.My gift to you is to make you aware of your great fortune,your healthy back and legs, your ability to do for yourself.Sometimes people appear not to notice me; I always notice them.I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.I give you awareness.I am the child who cannot walk.
I am the child who is mentally impaired.I don't learn easily, if you judge me by the world's measuring stick.What I do know is infinite joy in the simple things.I am not burdened as you are with the strife's and conflicts or a more complicated life.My gift to you is to grant you the freedom to enjoy things as a child,to teach you how much your arms around me mean, to give you love.I give you the gift of simplicity.I am the child who is mentally impaired.
I am the disabled child.
I am your teacher.If you allow me, I will teach you what is really important in life.I will give you and teach you unconditional love.I give you my innocent trust, my dependency upon you.I teach you respect for others and their uniqueness.I teach you about the sanctity of life.I teach you about how very precious life is and about not taking things for granted.I teach you about forgetting your own needs and desires and dreams.I teach you giving.Most of all, I teach you Hope and Faith.
I am the Disabled Child
~Author Unknown~
there is no break
there is no rest
he battles daily....
we try to put on battle gear (his meds)...
but it all just crumbles all around us....
leaving him completely defenseless against these monsters....
I wish I could see a glimpse of who Hudson is...
without his seizure saturated brain...
without a mushy body....
without trouble swallowing....
without a g-tube....
without debilitating drugs that put him in a fog.....
without this thing called mitochondrial disease.....
I wish I could hear his voice.....
would it be raspy, soft, loud, sweet?
I long for a belly laugh....or even just a giggle.
I wish I could be the one to figure out how to lift the fog that surrounds....
to find answers....
to help a little boy that I absolutely adore...
I would give up everything....including living....to see him live....
to let him have every opportunity of a life he so deserves.
I hate seizures.
I hate what they do before, during and after their attack.
They are like a thief in the night....
they stalk my son on a hourly basis...
It is choking me to see him seize so much....
and yet I can only imagine what it feels for him...
to go through endless seizures for the last 3 1/2 years....
daily...
too much for such an angel....just too much.
grab the tissue box....
I just read this on another blog for the first time....
I am the Disabled Child
I am the child who cannot talk.You often pity me. I see it in your eyes.You wonder how much I am aware of...I see that as well.I am aware of much...whether you are happy or sad or fearful,patient or impatient, full of love and desire, or if you are just doing your duty to me.I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do.You cannot conceive my isolation, so complete it is at times.I do not gift you with clever conversation, cute remarks to be laughed over and repeated.I do not give you answers to your everyday questions,responses over my well-being, sharing my needs,or comments about the world around me.I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself.I do not give you understanding as you know it.What I give you is so much more valuable...I give you instead opportunities.Opportunities to discover the depth of your character, not mine;the depth of your love, your commitment, your patience,your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you ever go on your own,working harder, seeking answers to your many questions,creating questions with no answers.I am the child who cannot talk.
I am the child who cannot walk.The world sometimes seems to pass me by.You see the longing in my eyes to get out of this chair,to run and play like other children.There is much you take for granted.I want the toys on the top shelf.I need to go to the bathroom...oh...I've dropped my spoon again!I am dependent on you in these ways.My gift to you is to make you aware of your great fortune,your healthy back and legs, your ability to do for yourself.Sometimes people appear not to notice me; I always notice them.I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.I give you awareness.I am the child who cannot walk.
I am the child who is mentally impaired.I don't learn easily, if you judge me by the world's measuring stick.What I do know is infinite joy in the simple things.I am not burdened as you are with the strife's and conflicts or a more complicated life.My gift to you is to grant you the freedom to enjoy things as a child,to teach you how much your arms around me mean, to give you love.I give you the gift of simplicity.I am the child who is mentally impaired.
I am the disabled child.
I am your teacher.If you allow me, I will teach you what is really important in life.I will give you and teach you unconditional love.I give you my innocent trust, my dependency upon you.I teach you respect for others and their uniqueness.I teach you about the sanctity of life.I teach you about how very precious life is and about not taking things for granted.I teach you about forgetting your own needs and desires and dreams.I teach you giving.Most of all, I teach you Hope and Faith.
I am the Disabled Child
~Author Unknown~
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Hudson Tyler
Our sweet angel!