A better week

Last week was better.

Less fits.

Less anger.

Less overwhelming frustration & panic.

That last one was about me.

First 3 were about Kiahna.

To what do I credit it? 

God. Prayers. Promises Kept.

God’s brought us a better, more knowledgeable counselor, and the means to pay for it.

God’s closed the door on one doctor for medication & opened the door for another with  much more expertise with K’s disability.

God’s provided a school full of teacher’s and administrator’s who love Kiahna & are doing so much to help her.

God’s giving us (ME) the willpower to remove sugar from our diet, along with food coloring.

God’s teaching me to understand more about how Kiahna’s brain processes the world & alleviating my frustration levels.

God’s created medications that are helping a little bit.  Still waiting on Him to open the door with the insurance to approve for the med to be given the way the doctor prescribed & the way that was helping.

Encouraged by K using words to request her preferences rather than just getting angry.

But, realizing that most of the time she still cannot regulate her moods & will take a small issue and make it into s mountain so quickly.

And something that was a small issue one day will be a huge issue the next.  Very unpredictable.

We have a long road ahead… one that may last her lifetime in one way or another… but unlike last weekend, this week I’ve had a few glimmers of hope.

God is Good.

Pam

Bethel Track

I spent my day at James’ Track meet!!  He worked hard, didn’t place in anything & didn’t do hurdles today.  It was very, very nice to see him!

The younger 5 stayed home by themselves… the house is still standing.  I rented 6 library movies. 

Only issue was Leah putting a bunch of macaroni down the sink (after she called me to find out if we had any cheese & realizing we didn’t) and clogged the drain.  My dad had to take apart the sink to get it unclogged.

So, I got to relax with my parents, sit, watch James,take photos, talk with friends, & even read a book today!!!!  I LIKE TRACK MEETS NOW!

Here are some photos from today!

James & Alex

Waiting his turn in the 4x400 relay…

Dying in the relay…

Handed off the baton…

Talking to Gma & Gpa after the race…

Can’t wait to go watch again!!!  Maybe in 2 weeks!!!

Pam

Icy Winter musings…

I took this photo Sunday morning when we had all that freezing frost…

Lots going through my mind tonight…

It’s almost 1/3 of the way through the winter…

No school today because of and ice storm last night…

I’ve exercised every day for the past 15 days…

I joined a fitness center for the first time in my life 2 weeks ago…

I believe it might be what is keeping me sane at the moment…

Got the call back from the testing place in Chicago for Kiahna… now must figure out if I am doing this testing how I am going to pay for it…

Her behaviors seem to be getting harder and harder to deal with & have required more changes at school & learning at home…

She’s responding well to the changes at school…

I have a lot to learn at home…

It would have been our 20 year wedding anniversary today…

Lots of things to think about…

Praise the Lord… He never changes… Has all things under control… and is never surprised…

Pam

Leah’s Birthday Party

Friday night brought a house full of eighth graders over to our house to celebrate Leah turning 14! 

It went really well!!

Thanks to my mom for lots of cleaning & babysitting the other kids… my sister and Brother in law & Shania’s parents (it was a double party) for coming to help me chaperone!

They were good kids!

Pam

Our trip to Pokagon

We spent the last 2 nights of Christmas break at the Potawatomi Inn

Tobogganing…

 

Zach’s on the back of the one above (cousins in front).  Below, James is in back, then Zach, Lucas & cousin Brandon in front…

Leah, Jadon, Kiahna & Grandma… Kiahna repeatedly told Grandma how “mean” she was for making her go down this hill. 

Warming freezing hands by the fire pit…

Leah & Livia in the line…

Swimming…

Back to school…

The kids went back to school on Wednesday.

Kiahna refused to get out of the van on Wednesday.  And on Thursday.

Today she got out in the car pool lane without a fit.  Good news!

Her behaviors continue to be a huge concern. 

Put her back on the medication she was on before the last one we tried.  She seems to be just as angry off the medication as she is on it.  At least on the medication she is calmer & less impulsive.  We will see how long this lasts.

Her neurologist no longer takes our insurance.  Found that out yesterday.

Taking her to her new therapist today.  She doesn’t take our insurance either.

A week from today we are meeting at school to go over her IEP.  The special ed teacher admitted to me today that Kiahna is the first diagnosed FAS child she has worked with.

UHG.

DEAR GOD…. HELP!!!!

James went back to college on Wednesday too.  It was really nice to have him home.  It went well.  He’s maturing a lot and I am really proud of him.

Track meets start up for him next weekend.  We will try to get to some of them, many of them are hours away from here. 

Zach is 16 & 180 days today.  Officially old enough to take his drivers test & get his license. 

This could be good or bad.  We will see won’t we. 

(repeat above prayer here)

Leah’s birthday is Monday.  She will be 14.  She is planning a party for next weekend.  Wants to have boys and girls. 

shudder.

pray above prayer again.

I purchased a family membership to the new wellness center about 5 miles from our house. 

I’ve walked/ran 10 miles this week.  Swam some laps too.  Mentally I can see a big improvement in myself.  Physically, my body is screaming some things I can’t repeat on this family blog. 

It will be good for us all.

Better diet.  More exercise.  Good things.

Pam

First day of the new year…

How are you spending your first morning of this year?

I am looking through recipe books.  Finding recipes that don’t contain milk, white flour, or sugar.

Needing to buy some groceries.

Needing to pack food & clothing for our little family trip that we are going on tomorrow.

Wanting to feel positive and encouraged about the new year.

The old one ended quickly when we tried to spend some time with a large group of friends and my 6 year old bit someone.

My 6 year old who I have recently been told has FASD.  Fetal Alcohol Spectrum Disorder.

As I read and educate myself, I see her fitting more and more into this box.

I find myself fighting tears as I realize this is our life.  It’s not going to suddenly be something she “grows out of”.

I want to get her a t-shirt with a full explanation on the back of her hidden disability & how she really isn’t a bad kid.

As she makes the dog growl for millionth time at my feet.

I met with a new counselor this past week.  One who I believe will help me & her learn & deal with this disability.

I learned of a place in Chicago where I can take her and have a full neuro-physc screening done, that is supposed to be able to tell us what parts of her brain are working properly and which ones aren't.

Those things are encouraging.

When school starts back up again next week we will set up a meeting with all the people who work with her.  We will make her a new IEP based on her new diagnosis.

Will school get better?

Maybe.

Maybe not.

We just tried our 5th medication on her to try to alleviate some of the symptoms.  Fail.

I am learning that FAES is brain damage. 

Diet changes seem to help many people with FAES.  (why I am going through the recipe books)

Neurotransmitters that send messages from the right to left & vice versa sides of the brain don’t fire like they should.  Medications don’t absorb like they should.

Everyone with these disorder is different, because whatever was developing the day that the substance was abused is what was damaged.

I need help.

I know God is providing it. 

Meanwhile, part of me is so hurting.  Grieving.  Aching.  Angry.

Pam