Unseen

People often ask me how Christopher is doing. I don't really know how to answer that. See, he looks fine, he really looks good most of the time, though sometimes his eyes betray him.  Lyme manifests itself in all kinds of ways but not usually in ways that you can see physically. It manifests in other ways.  Behavior, internal pain, which rotates, stomach pain, those kinds of things. It's also quiet. It's a bacteria. And it keeps drilling. Further and further in to his body. The further it goes the harder to treat. The longer the treatment. The truth is he will really never be cured. His symptoms may go in to remission but he will always have to watch his diet and look for symptoms and he will always have to question and wonder...is my Lyme coming back?  Something a child should never have to do.  All the way in to adulthood this will haunt him. His whole life. He will have to worry about his wife and children. Because, yes he can give it to them. What a heavy burden for a little boy. And all the while it's unseen to the naked eye.

So for right now he's ok. He's had a not so great last few days for sure. Yesterday alone he had three accidents. I blame it on our diet right now. As we have laxed some with two birthdays and Christmas and family coming in from out of town I'm doing what I can to keep his diet straight but I can't stay on top of all of it. January will be hard but will be a welcome change though he may have some bad herxing again.

Only time will tell.

Taking on a whole new thing. #lymeawareness

What is?  This is http://www.jrn.com/newschannel5/news/Nashville-Child-Faces-Lifetime-Battle-After-Missed-Lyme-Diagnosis-284702031.html?lc=Smart

My mom in va talked to someone today that saw this over in Europe. Wow.

It blows my mind. I can't ever give enough thanks to Todd, the reporter. We are blessed by what has happened in just two days. My only hope now is the big networks pick up his story. Woohoo!


A stranger somehow got my husbands phone number and called him.

I'm in a fb group related to a specific clothing brand I like but can't afford much of...and someone in that group had seen his story on her newsfeed!

Way to go little man!!!  Your famous!
#lymeawareness!!

Thanksgiving

Thanksgiving.  It's a big holiday.  But it's not just a holiday.  It happens all the time.  On thanksgiving, as I reflected on this last year, what I was most thankful for, was the people, the strangers, the friends, the family, who all in one way or another have helped Christopher.  Have cared for him, shown love for him.  There have been friends and strangers alike, that have donated to his cause.  For no reason.  And I'm not talking small donations either.  That is thanksgiving.  Again, today I'm thankful, and moved by events that have simply occurred over the last two days.  We are doing yet, another fundraiser (they seem to be something so easy to do).  And a friend posted in a local group about a fundraiser yesterday.  Mind you, I've posted a few fundraisers in there, but she posted his picture yesterday and well no one can resist his face.  Well, a news reporter saw the post.  He did some digging. And now tonight, Christophers story is on the air.  In front of thousands of people. This morning I had a child who had gotten sick from pain meds in our van, and tonight, a news reporter was at our house doing an interview.  It's been a whirlwind day, and it didn't start out great. But it's ending really well. And I am very thankful!  Thanks giving.  I'm so thankful for those who are willing to help a little boy and a fight for his life.  Words will never be able to express my thanksgiving.

Accidentally

Little man Christopher is having accidents again.  Tonight his ears were red and hurting him.  He said they were cut. But they weren't. Maybe it was a herx reaction. But then again...maybe not.

It seems things happen in an ebb and flow. Things seem to be easing a bit but he's still definitely twitching...

But the stomach pain is not something he complains about any more. He does still complain about his joints though just not all the time.

I love my little man

A man dies, his legacy lives on. Day 8

There's a dr.  His name is Dr. Burgdorferi.  He found the lyme spirochetes which was later named in honor of him.  Today he passed away. Without his knowledge and research I don't know where Christopher would be.  Images of him not walking, or gripping his stomach and groaning, or doing a head bob all come to mind.   All of these things I just listed are lyme related.  Without dr b we would know so little about this awful paralyzing disease.  I'm thankful for his unending research and for his willingness to share his knowledge and expertise.

Thank you dr b.  For how you've helped my son.  Thank you.

Day 7

I'm having to get refills on Christopher's prescriptions and had to call the Drs to find out how log he'd be on them (larger quanitties are much cheaper from a compounding pharmacy).  The reply was 3-6 more months.  And the addition, possibly of another script.  Though erik and I are both nervous about this script.  It's heavy duty with side affects like depression and anxiety.  I can't imagine all that in a vibrant 4 yr old.  In some ways I see him coming out of this, seeming better, but in other ways, it's worse.  It comes in waves.  I just wish it would go now.  Kind of like Marvin k mooney.  Will you please go Lyme disease and bartonella (harder to treat than lyme) and leave my child alone.  Unscathed any more.  He's already developed a sense of trepadation and trauma from all the Drs he's seen.  And while I know it's good and helpful but I feel like an awful parent having to subject my innocent, unknowing child to 8 vial blood draws, medicines he cant stand to take, one med that turns his pee and tears orange.  Can I have my son back now?  Enough.

day 6

Last night Christopher went to bed with a rash on his chest.  It looked prickly and he was itchy.  Now the questions begin.  Is he herxing...  or is he having another allergic reaction?  What is a herx you asked - A Jarisch-Herxheimer Reaction (often called a Herx for short) is the reaction that your body gets when there is a spike in die offs from the Lyme disease and associated co-infection bacteria.


So is he having die off?  If he is than it's ok to have the rash.  But if he's having an allergic reaction it's bad.  And us, his parents and his dr have to figure out what it is.  This makes treating lyme, and bartonella so very difficult.  The unknown.  The questions.  It's almost like playing Russian roulette.  An allergic reaction could be fatal.  but a herx....  that's ok, though it doesn't go without risk either. 


My word, I just want a break.  why.  my son will never be the same again.  ever.  why didn't they treat him :-(