Oh Rileys...Oh They Have Come Again!

The Riley reunion has been going on and it has been good to see everyone!

I really miss the ones that did not come though.

Particularly Ashley.....I love you !

And someday I would like to meet you Tom.

This year I can't do as much as I want, but I will do as much as I can.

Anyway.......

When I came home I found out I had an appointment with a surgeon to see about an issue I have with my tube....the doctor was not comfortable working on it yesterday.

That will be tomorrow, I am glad though because it is driving me crazy and it should not be a big deal to fix.
It NEEDS to be fixed.
stupid granulated tissue junk. ( If you wanted to know).

I am thankful I have a family that cares so much about me :)

p.s. I borrowed the title from a song O'Reilly  OHHH  O'Reilly  but since I changed it, copyrights should not matter.

Adaptation

 Both Physical Therapy and Occupational Therapy are amazed with me.....how I figured things out on my own .

I am determined for as long as I can to use my right side, the good side to the best  I possibly can.

I WANT to get myself dressed ....If it takes me some time ..oh well, I am going to do it until I cannot.

I WANT to wash myself....yes I am exhausted after getting myself  into the shower and washing my hair one handed.

This actually is exercise ya know.

O.k. so some days I can't get pants on my twisted up leg...I go with a dress or skirt, thats my style anyway.

Button up shirts are mostly used as jackets now.

Drawers are really hard to open and close , I keep most of my everyday clothes in a plastic box.

Who cares if it looks weird?

So when I could no longer sit on a shower chair because I cannot sit unassisted I invented my own with pool noodles....it is not exactly a chair but a sort of body support thing , it allows me to wash my hair.

I drew up a plan and mommy helped me make it.


Lots of people get injured and sick and maybe you can't figure out something ...sometimes your Mom will need to put on your shoes for you.  ( or some body out there )

But its o.k.

It is also important to know what you cannot do ....to the person who thought I could tube feed myself all with one hand, I would like to see them try that!!!

I adapt as much as I can but I also am extremely aware of what I need help with.

On to other things ....
....IVIG  was so much easier!!!

O.k. I still feel a bit off  however I think all tube feeding greatly increased my hydration and made everything much better.

Now on to something else.....o.k. so I have had this heart/ oxygen monitor thing ever since I  came back from the hospital .....both things drop ridiculously low at night .

The neurologist thinks maybe seizures??? 

I guess I have a lot to tell the doctor when I see him next time.

Personally I believe it has something to do with my nerves...on days when my pupils stay dilated longer the worse this seems to be.

Who knows????

But hey I am alive today and rejoicing that I am alive.

Life will change for many of us...but it just means it is different not necessarily less good, however yes a great deal of emotions will be there but we have to adjust.....unless you choose not too of course, and that is up to you.  I don't believe bitterness really cured anyone, or anger either.....thats all I have to say about that right now.

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.