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Tuesday, December 14, 2010

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!

Sunday, December 12, 2010

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?!

Thursday, December 9, 2010

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.

Wednesday, December 8, 2010

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.

Monday, December 6, 2010

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!

Friday, December 3, 2010

The OT eval and other shenannigans

The OT was fabulous.  She explained a lot the reasons why Ella acts the way she acts.  It made me feel empowered and yet sympathetic at the same time.

Basically, she said Ella operates at a high level of awareness all the time making her feel like she is constantly in fight or flight mode.  This made me kid of sad.  The way she explained it was as follows...

You know when you have one thing go wrong...like you loose your keys.  This doesn't bother you too much.  Then you misplace your favorite coffee cup...this also is irritating, but doesn't send you into insanity mode.  Well imagine like 15 things going wrong...you then start to snap...that is basically what Ella feels like all the time.  She feels like she has no control in her world and needs to feel control.  She is much more aware of verbal sneses and visual senses than the rest of us  (eeriely so, she has a photographic memory).....I don't think I am doing a very good job explaining this.  However, I feel like I understand her so much better at this point.

I actually asked how much of her behavior is her just "being difficult" and how much of it is her actually having some sort of sensory processing issue.  The OT said probably about 90% of her behavior is because of her sensory problems.  HALLELUIA...no one wants to hear that their child draws all over the couch with mascara because she is just being evil  (this happened yesterday). 

I am going to read the book she recommended...  The Sensational Child....in hopes that I can understand more.

I worry that she won't be able to behave in school because the OT said she has a problem filtering out sensory information.  I am typing right now and am tuning out the TV...apparently that would be really hard for Ella.  I think we can get a handle on this, though!


On another note, I had a great book club with some wonderful ladies.  It was nice to be with adults and not have to wipe a but, or feed someone a bottle...(although, we all regress back to this when you think about it). 

NO MORE prunes for Evelyn...seriously, that must really be a natural laxitive...all the way up the back and over the shirt...

Sorry my thoughts are so scattered...I am tired and I think I am going to retire to bed...BEACH tomorrow!

Lets get started

I decided to start and use this blog as a way to vent and possibly a way to help others who are having similar issues.

Our oldest daughter Ella was never "normal".  From day one, we knew something was different.  Not necessarily wrong, but definitely different.  She NEVER sat still, she would wiggle when we fed her a bottle and she would wake up at night every two hours. She threw up everything she ate.  It got so bad that we had to feed her a bottle with towels around us to catch all the vomit.  Seriously, this was exorcist child...all that was missing was the spinning head.  This led to a very sleepy and stressed mommy and daddy.  Luckily, we had a wonderful friend with a child that some of the same issues, and she steered us in the right direction.

We took Ella to an evaluation with a Speech Therapist, an Occupational Therapist, a developmental pediatrician and a nutritionist.  She was diagnosed with failure to thrive, having a severe milk allergy,  GERD and being a "sensory seeker".  What the HELL is that.....this was pretty much my reaction.  All I could think of was Harry Potter and him being a Seeker on Quidditch!!!!  HA....my life would be nothing if I didn't remain with a sense of humor.

Anyway, we got her on a formula called Elecare....This stuff is $50 a freaking can.  That is insane.  However, it seemed to help.  Her cheeks were no longer eczema red and she seemed to throw up a little less.  She started to see a feeding therapist and then she got into group feeding therapy.  It sounds funny, I know.  A bunch of kids under two sitting there learning to eat together.  We seemed to be on our way to some sense of normalcy.

We Ella was about 13 months old, I found out we were pregnant with Evelyn.  I was so excited, but at the same time, scare out of my wits.  I didn't know how I was going to go through the sleep deprivation again, the ear infections, the throwing up....etc.  Not to mention, I was a high risk pregnancy and how was I going to do bed rest with a one year old?!

Nevertheless, we did it...Jim took off  half days at work (thanks to a wonderful understanding Air Force Academy) and Ella went to day care the other half of the day.  However, she stopped really eating very much and her weight was abysmal.  At 18 months old, I think Ella weighed 18lbs.  I am not expert, but I don't think the two numbers are suppose to match.  We got through it, and Evelyn was born.

It seems the Mikes family can never do something normally.  I was on magnesium (to prevent seizures) while I was in labor with Evie.  This made her very lethargic when she was born....they called it "stunned".  I call it lifeless.  It was very scary and she spent a day in they nursery to make sure she was alright.  She came through beautifully and I tried to breast feed the best I could.  However, my milk was not coming in due to the magnesium...and I was induced.

Evelyn ended up going home with mommy...HOWEVER  she was ORANGE.  Seriously, the sweet baby looked like a pumpkin.  I noticed she wasn't pooping and would barely wake up to eat.  I took her to the doctor and her billirubin level was 19.  That is REALLY high for a three day old baby.  They sent us home with a billi bed and we were to return the next day to get her levels checked.  We got her blood drawn that morning at at 10 AM we received a call that they would be admitting Evelyn to the hospital to treat her billirubin which was now 23.  At 25 babies start to get brain damage.  I was freaking out, to say the lease.

Thankfully, Evie pulled through and her levels started to drop.  And I got to take my sweet baby home.

This experience was SOOOO different.  Evelyn is God's equalizer.  She sleeps, eats and is so freaking happy.

When Evelyn was about three weeks old I took Ella in for a routine GI appointment.  The GI said we were now in crisis mode with her weight and we needed place and NG (naso gastrointestinal tube) in her and admit her to the hospital for a while.  They also wanted to do an endoscopy.

Did I mention during all this that we found out we were going to move to Maui so we were trying to rent our house out and prepare to move across the ocean....very stressful time.

Ella had an endoscopy and we placed the NG tube in her.  She was a trooper and never tried to pull it out. She had that tube for about four months and we were able to remove it when we go to Maui.

That brings me to where we are now.  We LOVE Maui.  Jim loved his job here.  Evelyn is the happiest chubbiest baby you will ever meet. I am loving living here.

However, Ella is exhibiting signs of Sensory Processing disorder or Sensory Integration Dysfunction.  If you don't know what this is....here is a link to help you understand.

http://www.sensory-processing-disorder.com/

She has a hard time with transistions, she has an unusually high energy level, she has a high tolerance for pain...the list goes on and on and on.......

Ella is exceptionally bright...her verbal skills are incredible.  I worry because I want her to live up to her ability.  I worry because I love her.  I worry because I never want her to feel different.  I worry because I don't want Evie to ever feel second to Ella's needs.  I worry for a myriad of reasons, but most of all, i worry that I won't be able to help her like she needs.

I have had the why me moments....and then I remind myself that she is healthy and happy. There are kids with MUCH MUCH MUCH worse problems.  Still, that doesn't negate how I am feeling and how difficult Ella can be to deal with sometimes...


There you have it, that is our story over the past few years.
This has tested the bond between Jim and I; however, I think because of all of it, we have come out stronger than before..

Hopefully I can use this as an avenue to help me on those days where I feel I may pull my hair out.  Hopefully this will remind me how great my kids are...as I plan to write the good and the bad....

Today Jim and I going to meet an OT that specializes in sensory issues....keep your fingers crossed that she can help us!!!!