Daddy I Want Too But I Don't Know If I Can....

Last Sunday Daddy took me to church at the local Lutheran church, they are wheelchair accessible neither Daddy or I thought I should be carried with my raw sore tube,  so this worked out well and we followed our neighbor and he sat with us.

I have not been to church in a looooong time.

Anyway....it came time for communion.

Daddy asked me if  I wanted to do it and of course I did but I was not sure if I actually could.

Last time I did the bread just sort of had to set in my mouth till it went down ...and the wine ...I coughed.

At the Lutheran church you go in the front and they give it to you there...at our chruch it is passed out at your seat.

I told Daddy I was afraid I would cough up communion.

Daddy came up with a plan...If they give you too much bread I will eat the rest, If you can't get down all the wine I will take the rest. Daddy said it would be o.k. and God would understand.

Daddy had to take some of the bread ....but ever so slowly with many many swallows down went the wine.

I was praying and praying.

Thanks be to God.

And it was fine.

To some people it probably seemed odd Daddy had to take some of my bread....to others they probably wonder why it took me so long to swallow the wine, but that does not really matter , not really.

God understands.....and that is that.

A Panda Named Spud

 I was given a stuffed panda which I named Spud when I was in the hospital.

I nearly squeezed his guts out after surgery because of pain.....yesterday I realized his arm was hanging by a thread.

Poor Spud ...he smells of some strange chemical like surgery smell... ether ???

He helped me out a great deal and nearly lost his arm in the process.

Daddy said whoa he looks rough! 

Poor Spud....but he is mended now.

Yesterday I had a doctors appointment , I will resume IVIG Monday.... The doctor remains cautiously optimistic.

There was also the discussion of brain surgery and VNS.

I said VNS would be o.k. but NO to removing part of my brain .

But....he upped the onfi and we will see how  I do until next month.

So that is that.

We will see how things go.

And Yet Another New Normal

 So on June 1st I had really bad seizures ...ended up needing bagged but started breathing on my own.

The local hospitals ICU was full so they sent me to another hospital.

My memories are a bit hazy....there are a few things I do remember though, but I think I will write about that another time.

I had multiple seizures.

I ended up with a feeding tube which with all honesty I knew I would probably end up getting, since October I started having a really hard time chewing and swallowing followed but I thought I was managing everything.

I would squish all my food with a fork until it was mush and mix oil in it which is always one the table because my family eats lots of salad.

I could not eat salads for months and months.

I only ate mushy or mushable stuff.

I recently found myself coughing and gagging when I tried to drink.

I was not managing that....I just thought I was.

I failed the swallowing test.

I thought I would actually.

I CAN swallow 1/4 a teaspoon of honey consistency of stuff but it takes me so long and so much work that I burn more calories than I take in.  You can't sustain yourself that way.


So now I have a PEG tube.....and it was about the worse surgery pain I ever had.

Speech therapy came today and said I will probably need the tube feeding for the rest of my life....but the lady that did the swallowing test told me that also.

I do not like the PEG tube....it still hurts actually.

I am thankful for it....and that I am back on my drugs that don't come in i.v. form...I went without them for a week.

I am thankful I am home.

I am also upset with the fact that every time now that I have really bad seizures I seem to lose something....or something in my body won't work right anymore.

I have not really talked about that because I just don't want too.

I don't want people to know.

Probably way too much info anyway.

I am thankful for the many visits I received, I am thankful for all the love and prayers.

I am still here and adjusting.

More About IVIG

The actual infusion is not bad....it does not burn or anything.

I am very small so I am about half of the usual adult dose.

It does make you feel pretty rough though....fevers and general stomach sickness.

Hopefully I am over the worse and the good is yet to come.

Hope Hope Hope Hope

Been falling asleep a lot ....could be the seizure drugs though or just a combination of it all.

Sleep is good though.

I had a really weird dream.  I was on a sailboat and I was a pirate princess and Kelsey was on the boat too.  We were both pirates but we were not stealing stuff we had a note from Daddy written on yellow legal paper that said something like this:

  Dear Jessie and Kelsey,

Please come get me I am at the green circle island ( See map...there was a map stuck to it with a paper clip it was a green circle drawn in crayon with a red arrow pointing to it with a stick man that had "Daddy" written on it ) ,  I am trying to catch you a monkey.

                                                                            love, Daddy  XO

The only problem was there were 40 green circle islands and we never found him or our monkey :(

Bummer.

Anyway this dream made me laugh it is super goofy but I needed it ....:)

Wednesday I Start IVIG

  IVIG is a load of antibodies from over a thousand different healthy donors ....OVER a THOUSAND.

 So literally when I say a thousand thank yous...It will mean a thousand thank yous.

Wednesday ....All of that will be inside of me.

Whoa Dude.

seriously.

EMG Results And A Diagnosis

  So today I had an EMG done.....was not painful at all they did not use needles some sort of conductor thing and metal probe things. ( Well not painful for me.)

 So my left side is pretty bad , the nerve conductors are like blocked or something.

I sort of figured that.

Anyway I now am diagnosed with CIDP  Chronic Inflammatory Demyelinating Polyneuropathy.

It is an autoimmune disorder, my body has decided to attack itself ...to attack the myelin sheathes around my nerve fibers.

The destruction or demyelination of the nerve leads to an impaired ability of the nerves to communicate and function.

That is all I am going to say about that right now.  It is bad.

Also the EEG I recently had showed a seizure from the left temporal lobe.

The Dystonia is due to the CIPD.

Now I am hopefully going to be getting IVIG...to stop the progression.

We don't know how much or if it is actually going to make me better but if it keeps me the same that is better than worse...I have nothing to loose.


Thanks for your thoughts and prayers.

When I Really Feel Down...

 It seems like something amazing happens that cheers me up....
Recently things have been rather rough and on a very hard day I got this in the mail..

 It was a good reminder , something I needed to hear that day and also it was a wonderful reminder of how much this friend cares for me and prays for me.

I have been having a rough time getting myself  to get my work done....you may be wondering what work?

My Art for The People project, some of you know about it and some of you do not.
I make lots of  half page size drawings and give them to people ...mostly I hope it cheers them up.

When you go to see doctors as much as I do you will see sad people....not just at the doctors you see them everywhere.

Sometimes I am one of those people...but I don't want to be... I want to make a difference in the world I want to cheer them up like others have cheered me up.

I let my stack of drawings get rather low .

I feel like I was not doing my job.

So...maybe I can't make 15 a day ...some days I can't make any ...but some days I could of made 2 but I didn't .

I intend to do better...one could make a difference and if I am supposed to do it I better do it.

I pray for the people that get my drawings.  If it cheers some one up then I think I have done my job.

Jobs don't always make you money....sometimes you are just supposed to do something because God wants you to, and if you do it I believe you will have peace in you soul.