HBOT dive #2 . . .a wonderful surprise

Well, I survived dive 2 with the help of Benedryl.  Apparently it does indeed take the edge off.  I also avoided my full caffeine intake this morning as I didn't need any extra help in the heart racing department.  I tried visualizing before I went in and more prayers of course.  The biggest help was bringing my ipod with a few new songs.  I was going to load it with the exact number of minutes of music so I would be able to track time but I had about 40 min on there and that was fine.  I let Doodle borrow it and it kept her occupied a good 15 minutes.  She especially likes Justin Bieber's "Baby" and I do too.  I do not care who knows it.  He is adorable and that makes some people want to hurl but I love it. 

Doodle kept me calm.  It was amazing.  As long as she laid still and played with my phone or a book I felt relaxed but when she started to sing or kick from boredom I started feeling the panic return though much milder than yesterday's experience.  I also found that if I covered my eyes with my arm and couldn't see the ceiling of the chamber, I was okay.  Sitting still helps the heat to not build up to bad. 
Speaking of the word CHAMBER.  What an awful word to use in this situation!!  Its like calling it a Hyperbaric COFFIN or DUNGEON.  Why didn't they name it the Hyperbaric fun tube or the HB Oh boy!  Sheesh, who wants to lock themselves in a CHAMBER that doesn't suck blood?  Me that's who.

I haven't decided if I will post a video daily or intermittently yet.  But here is the really wonderful surprise.  After the dive we had to go straight to her psychologist for ABA therapy (I will fill you in on that soon.)  She did so great today the Dr asked me what we did differently because Doodle was so calm and cooperative.  CALM and COOPERATIVE.  I don't think anyone has ever used those two words together to describe my daughter during one of her many therapy sessions.  That is mini miracle #1  But not the wonderful surprise.  The surprise is . . .

We were sitting in the waiting line at the pharmacy drive thru in the silence no dvd, no radio, no talking and out of the blue she says to me "I love you" 
You have to understand that she hasn't said that to me in 2 or 3 YEARS and never on her own.  It was always echoed.  Boy, what a reward for all I'm going through.  If you have never had a kid who couldn't tell you they love you you probably won't understand how it felt, or maybe you can imagine it.  I don't know but it's like hearing you've won the lottery.  Really.  That's all for today.  Stay tuned and thanks for your many prayers.

A few thoughts on Hbot dive #1

Well, we did it.  We dove.  It.  Was.  Awful for me that is.  She had no problems until it got hot and muggy about half way through.  Then she was bored and hot and started to fidget.  But back to the beginning.  Unbelievably I had quite an experience.  It started out ok.  I am not panicky.  I have never had claustrophobia, I ride roller coasters and am not skittish.  I had a mini freak out when the Dr. zipped it shut.  Its cylindrical in shape and about 7 feet long so we had room to lay down or sit up.  it has to inflate and that takes 5 min and it makes your ears pop like when you drive up in the mtns.  Not uncomfortable though.  I had to turn around and look out the vinyl window to see the Dr and I just thought "I can't do this, I won't be able to get out.!"  Terror welled up inside me as well as panic and guilt because I paid a lot for this (we are skipping our summer vacation at the beach) and I love her and want to be able to bear anything to help her, even my own discomfort.  The shame of losing momentary control was immense.  It was mostly in my head thankfully, I didn't scream but I did insist she unzip the chamber and let me stick my head out and think for a second.  She said it happens sometimes but most always with the parents, the kids are fine.  And that was true.  Doodle thought it was funny.  She happily read books most of the time, or laid in my lap.
 I psyched myself up and told the Dr we would try again.  I laid down and did the only thing I could think of that might help.  I prayed.  I started saying the Rosary.  Now I am Catholic and that may be foreign to some of you but let me tell you - if you have ever been in a moment of intense fear and have nothing to cling to but prayer it helps to have something repetitive or meditative to say because you can't find the words that may be in your heart or head at the moment.  Just get yourself to that place of peace that surpasses human understanding as fast as possible.  I hate to sound dramatic.  I certainly don't live my normal life like this but I want to be honest about this whole process and this is really what happened.  It worked, I asked God and Virgin Mary to calm me and Pauli and to get me through it for her sake.  I was able to have my phone in with me and that helped. I could call my husband, a friend or the Dr in the next room. 

I started reading, time went by.  It felt good and relaxing for a while.  Then it began to be oppressively hot and sticky due to the pressure.  I had a small fan but I directed it at her to keep her cool mostly.  She got bored and agitated.  I started panicking again . . . I thought "She is going to flip out and want to get out, I wonder if she is feeling what I felt at the beginning?"  I had to get out.  I prayed again, harder and slowly the panic subsided. I imagined a clock in my head counting down the time.  Theoretically I knew we were safe and that there would be an end soon.  But what did she think?  Did she think we would never get out again?  I can only imagine what she thought as she has never been able to tell me more than "sad" or "mad" and that has been very very recently.  I hate autism.  I hate it.

So I had an epiphany of sorts.  I always thought people who freak out about enclosed MRI's were kinda wimpy and needed to get over it.  My own mom had to have relaxing medication to get through it.  The Dr. told me to take a Benedryl before coming in tomorrow.  It hit me - my sister Becky, who passed last year, took a Benedryl every day of her life along with other medications like Zanax. She had panic attacks and phobias her whole life.  God I had been so unsympathetic!!  How could I be so harsh on her??  I am so sorry Becky.  I get it now.  I will never judge someone for their phobias again. I get it now.  You have zero control over it and can't talk yourself out of it.  Its a physical and psychological thing.  I get it now.  Wish I had understood then.  I'm sorry . . .

HBOT Session #1

Tomorrow morning Doodle and I will start her first "dive" in the hyperbaric chamber.  I am learning as I go but here is what I know so far:

~It is used on brain damaged victims (such as those in car accidents)
~used on diabetics and others with non healing wounds
~used on divers who acquire the bends
~used on kids with autism who theoretically have areas of the brain not being used due to a possible lack of oxygen perhaps during birth?

~I have heard it can have fantastic results with decreasing behaviors that are undesirable. 
~There is some scientific proof of positive results out there yet it is not approved by the FDA or whatever governmental body regulates such things.
~it is fairly expensive for being experimental, or maybe all experimental treatments are expensive since insurance won't touch them.
`Its probably the only thing we haven't tried to help my daughter.  She is seven now and a well-respected Psychiatrist in the field once told me that when she turned 7 the therapies quit working as well.  Makes me feel panicky and sad but still hopeful.

I believe in miracles, even small ones.  I will still believe in them even if this turns out to be a big waste of money.

I will keep you posted if you are interested.  I plan to take some short videos of me asking her social questions which we have been practicing under ABA therapy every day or two and will post anything interesting that happens.  Feel free to follow our journey.  I am excited and optimistic yet tempered with realism and nagging random voices from science professors in my past!  Prayers are much appreciated as always.

Summer

Here are a couple of recent shots from the inlaws. I love going to visit BUT in the summer they aren't big fans of really putting the AC to good use. That and the fact that the kids come home with ticks (icky!)


Little man is quite a ham and quite a handful. He loves to ride the gator. That is probably the biggest attraction there besides Nana and Pop.

Pop is growing a nice veggie garden this summer and the kids are really getting interested in where their food comes from.

One day I plan on having my own garden but for now I need to get someone potty trained and let the dog mature a bit more. Hopefully next year!

Doodle's new activity

Here is Princess #3, well technically she was born 2nd so I guess she is 2. Anyway, she loves her Daddy almost as much as she loves Pizza and playing on the computer. He is her security blanket. I try not to be jealous but sometimes its hard. At least she connects with someone. That is such a blessing when you have a child with classic autism.
There is so much talk these days of autism. I hear people in the grocery store casually throw around, "oh my son has autism" I look at the son and he is smiling and talking to mom or the cashier and maybe he gives a little screech or repeats a phrase he just heard but I am thinking "really?" Umm No your child is "on the spectrum" and that is a whole other ball game. Being on the spectrum is nothing like having full on autism. Its like night and day and I don't understand why they are even considered the same thing. It makes me mad, sorry. But when people say their kid has autism so casually it really makes light of the heavy load the kids who are really afflicted (and their families) carry. If your kid can't tell you they love you, or what they want for dinner, or why they are crying at 3 am or doesn't even look at you when you come into their room at school, then you know what I mean. Otherwise your child is on the spectrum or has PDD-NOS. They do not have Autism per say. Yes I know there are different levels of severity. Something about this just really makes me angry. Sorry. But on a lighter note . . . We have a new equestrian in the family!! Doodle has started horse therapy and she LOVES it!!
See that smile? It lasts the entire 30 minutes she is riding. And she is getting better and
more independent each week.














These are some of the volunteers at the farm she rides at. They are awesome and some of the kindest hearted people I have met in our journey so far.

Musings of a Wal Mart Shopper

We have no idea what it really means to be inconvenienced do we?  I mean yes, sure, when my two year old decides to explode his diaper just as I am checking out - that is an inconvenience.  And maybe when my Aunt from Alaska calls just as I am drifting off into a delirious and happy nap experience - inconvenient.  But really, take the Wal Mart experience . . . Love it or hate it, you have convenience as a way of life now.  Most people live only a short distance from one of these mega discount retailers. 

Up and down the aisles you can wander and find nearly everything you want in one store.  You can ponder the important questions of life - Does it make me a bad person if I don't buy the detergent that cost 2 dollars extra and sends its profits to Haiti or Katrina Victims? (no, I prefer to send my donations directly and buy the cheaper detergent)  And the less important . . . Do I really want my armpits to smell like Cherries?  Yes they have that "flavor."

I really don't like considering myself a Wal Mart Shopper but alas with 5 kids it is inevitable.  HOWEVER, were I to win the lottery you would probably never find me on the inside of one again just to avoid the random weirdness that occasionally crosses your path there.  Does that make me a bad person?  Don't answer that. Now let's see I am thinking lemon might be the right choice. . .

Summer Begins

I love this shot! Not bad for getting 5 kids in one place at one time. I think this may be my Christmas card for next year so if you are on my list forgive me. Do you know how hard it is to get 5 kids dressed up, hauled across town, and forced to smile by some overly eager worker at a portrait studio who you know is thinking "SMILE DA***T!!! - I hate my job!!!!" Well they don't all think that . . .that is until they've experienced my crew. The quads are seven and Budgie is two and change. Its great that they can help out with the little guy now. By this time next year he should be well out of Pull Ups, yay for the budget!

A good shot of Buddy's new waterproof green cast. He earned this about 2 minutes after the picture above was taken by falling off the monkey bars - How Cliche?

Princess #1

Princess #2.

Princess #3 will be in very next post showing off her new activity!