Dentist Hell!

Even if Ella didn't have sensory issues, today would have been horrible.  She had two cavities to fill today.  She still drinks a bottle and we have difficulty brushing her teeth because she is "orally defensive".  She also had really horrible reflux which tore away the enamel on her teeth, hence all the cavities.  They swaddled her...and that is putting it nicely...then they held her head still while she screamed and squirmed.  They didn't didn't give her anything to help her calm down.  No nitrous, no conscious sedation, nothing...i felt so awful that I could not help her.

They also found four or five cavities while they were in there.  Needles to say, I will be filling them when we go to Houston.  Maui is a beautiful place to live, but the medical care sucks.  I really hope this didn't traumatize her for the rest of her life.  She was such a little trooper, though.  She thanked them and then told them by and gave them hugs for giving her a toy.  What a sweet little girl.

Hopefully the next dental adventure will be more pleasant!

Busy weekend....and night terrors

We had a great weekend!  Ella behaved for the most part and we didn't have too many meltdowns.....UNTIL this afternoon.   And it was a BIG one.  I am actually starting to thing she is having night terrors.

She wakes up from her nap sometimes (usually about three hours) and just screams like someone is ripping out her insides.  It is awful to watch.  She can not be consoled.  Anything I say or do makes it worse.  As evil as this sounds, I am thinking about videotaping it just so I can show the OT. They last for about 20 minutes sometimes and are really difficult to watch.  I have learned to just leave her alone, as my presence tends to lengthen them or make them worse.

On a side note...we are flying to Houston on the 21st over night.  Lets just hope she does not have a night terror (or whatever this is) on the plane.  I am sure all the passengers would appreciate that!

We have two OT sessions tomorrow back to back....it is going to be a long, but productive morning.  NIGHT ALL...whoever is reading this?!

A place for Ella

Ella keeps going in the guest room and closing the door.  Normally, I wouldn't have a problem with this, but the room is not kid proof because it connect to the bathroom.  She has figured out how to unlock that door.  Damn working on those fine motor skills!!!

Anyways, I bought a little playhouse to put in her playroom.  I think it will help her wind down.  There isn't a whole lot of stimulation and she can close the curtain behind her and I know she won't get hurt.  Chicco makes it.....

I think this may help her filter out a lot of the outside world and still get to play...Also BIG plus that it stores against the wall, so it won't take up a ton of room... OK that is my toy plug :)...we are also getting Ella a weighted blanket.   She loves to sit in the room with blankets on her, it calms her down.  We live in Hawaii, though, so it isn't like it is ever cold enough for me to pile the blankets on her so she can get some deep pressure.  Hence the weighted blanket.

Really hoping this playhouse will be a space for Ella to maybe wind down and just be Ella.

Unsung Heroes...for Evie

Too often I feel that children with siblings that require a lot of attention remain in the background unnoticed.  I don't want this to happen.  This is Evelyn Rose.  She is a precious 8 month old baby girl and a constant source of joy in our life.

She had some trouble when she was born.  She had severe jaundice, but pulled through like a trooper.  Since then we sit back and look at her.  Evelyn is patient, has and old soul (I think) and loves to laugh.

Time will tell what is in store for this child.  We will sit back, relax, and watch her blossom with her sister.

You Can

I am tired of people telling me that Ella's behavior is normal. If you think you know more about my kid that I do, then by all means....have at it.  You can watch the tantrums ands stand by helplessly. You can watch her wake up from a nap unable to soothe her self, and unable to let you soothe her.  You can can watch her run around with endless amounts of energy.  You can watch her with other kids and wonder if she will be able to have friends when she grows up.  You can watch her bite herself when she is mad because she doesn't know any other way to cope.  You can watch her hit her head and not react at all when you know it should have hurt.  You can watch her not eat.  You can because sometimes, I can't.

The more and more I read about this, the more I know the diagnosis we got is correct.  Sensory Processing Disorder is a neurological problem.  How do I help her?  I don't want to fix her, she is not a car, there is nothing wrong with her.  I need to help her and I wish I knew how to do this.

My next concern is that these OT's we are going to will not be covered by the insurance because we have Triwest.  They don't cover any kind of sensory problem.  This in itself is ridiculous.  I am tired and worn and and my eyes hurt from holding back tears sometime.  I don't talk about it because it seems taboo...and no one wants to hear it, or they think Jim and I are blowing it out of proportion.  Next time you think about saying something to someone with a "different" child.  You Can shut your mouth, and keep it to yourself.  But I can no longer shut mine.

Research and more

I was sick for two days..it was a great diet, but I am glad it is over.  As awful as it was, it was almost a Godsend.  Jim had to take off work to watch the kids for two days by himself...and I think now, and only now, he understands what goes on around the house.  The kids "tag teamed" him all day long.  Evie would take a nap, and Ella would be awake...or vice versa...it was rough.  I could hear him getting frustrated and sometimes I would intervene...for the sake of everyone!  He was exhausted at the end of the day, it was great! 

When I asked him if he understands better now what I go through, he replied "well, I don't think it is always like this"  I told him he was wrong, and then he acquiesced.  All in all, I think that the grass is greener on the other side syndrome is more that likely gone.

I had a lot of time to do some research regarding Ella, I think I may take her to a place in Colorado for about a week or so to do some intensive therapy.

http://www.starcenter.us/index.html

The Star Center specializes in Sensory Processing Disorder and I would really be interested to see if it could supplement her therapy.

Ella is a funny kid, though.  I feel like her and I have our own language (good and bad thing)  I appear to be the only one that can understand her all of the time.  She was telling Jim Pop tart over and over and over again yesterday.  When I finally looked at her and said pop tart, she replied with, "pop tart, got it"  with a thumbs up for me.  This is her new favorite thing to do...when you guess the word she is saying, she gives you a thumbs up and tells you, got it...it is one of the cutest things I have seen.

Having kids is not for the faint at heart...or stomach

What a weekend!!!!!

Evie had double ear infections and Ella is...well, Ella.

Took Evelyn to the hospital and was put in a room with another person...the Medical care on Maui leaves something to be desired.  She proceeded to scream non stop for the next hour and then crashed...followed by the doctor coming in and waking her up five minutes later.  Needles to say, both ears are infected...poor chunky monkey!

Ella has take to spitting on herself (at least it isn't on other people).  She then proceeds to rub it all over her body and say she "Mommy, wash hands"...okkkkkkk...what am I suppose to do about this?!  I think this has some sort of sensory meaning behind it, but I am not sure.  It is quite possible that she is just weird!

To top it all of, I am in bed today with fluid coming out both ends of me...ewww, I know gross.  Things come in threes, right?!

The countdown to Christmas begins.....as does the countdown to the 8 hour plane ride that I am dreading!