Hai-Tides of Change-Ku

The time for a change
Was several months ago
But I can be slow

Wanting perfection
The perfect four column theme
Then hours of coding

Two sites to build up
One from scratch, one remodeled
And now they are up

My site of myself
My own goals and challenges
Beyond the children

Saving money, time,
My health, the environment -
It’s all there inside.

So here you are in my new theme!!  I hope you like it.  I tried to make it easy enough.  If you have problems seeing it (the sidebars), please tell me.  My BFF had issues, but others have not!! 

I’ve also launched my new site Redefining Self.  It’s going to keep my green living, frugal, and healthy eating posts off of this site so I can maintain my focus on the kids, my family and their lives and challenges - as this blog was meant for!!  I’m very excited about the new site…and I hope you’ll visit it from time to time!!

P.S.  Yes, I said my renewed blogroll would come with the new layout.  I am still working on it, but should have it up in the next day or two!!  I have a lot of site this time around!!

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For more Haiku’s more clever than mine, visit Jennifer!!

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Thursday Thirteen #14

Don’t forget to ask me some questions!!  I’ll answer just about anything!!

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Thirteen Random Things

1. My garden(s) have sprouts!!  Sage, Dill, Rosemary, Lavender,  and Basil are growing in my herb garden (The Oregano is stubbornly absent)…and Tomatoes, Potatoes, Garlic and Beans are popping up in the small veggie garden I spontaneously created!  I feel proud.

2. Last night Miss M co-slept with us.  None of my kids have done this after the age of 4 months before.  Night terrors led to last nights foray. 

3. M has had night terrors all week.  Every night at midnight.  Do I blame school and the over stimulation?  Or is it just a phase?  She’s had them before…

4. I hope to turn my kitchen battle/challenge into a haiku for tomorrow.  It’s been waiting long enough that my kitchen no longer looks like it does in the pictures…maybe today I’ll repeat the challenge.

5. I’ve been watching Angel in the mornings since I have to get up to get M ready for school.  I’d probably understand it a lot better if I wasn’t watching every-other episode (There’s no way I’m waking up at 6 to watch the first epi of the day).  I admit to not watching it first run, even when Spike came on.  Angel and Cordi just didn’t pull me in the way Spike and them did.

6. I’ve begun making jewelry again.  I’ve made two necklaces.  Would have made more last night…but…after #3, well, it didn’t happen.

7. I need to get off my arse and finish making my veggie bags and grocery bags.  My Kroger bags are great…when I go to Kroger….

8. I still plan to launch the new layout and new site tomorrow.  I’m behind, but procrastinating brings about creativity for me.  Knowing I only have a few hours in which to complete a task really lights a fire under my butt.

9. I channelled Jess last night.  Dizziness for 5-10 minutes royally sucked.  I don’t know how she survives living in a constant state of it (she has Meniere’s Disease…vertigo is a virtual constant)

10. I went to bed at 12:30 last night.  In case you didn’t know…that’s UNHEARD OF.

11. I have no blogging inspiration at the moment?  Can you tell?  No?  REALLY?

12. I’ve been so wrapped up in other stuff and blah that I haven’t touched my Interweave Knits magazine…I got it 4 weeks ago!!!

13. Dora’s voice annoys me a GREAT deal.  Seriously.  The show isn’t so bad, but her voice grates my nerves.  I prefer Kai-Lan.  She’s far less annoying at the moment. 

Yeah…sorry for the crap-tastic post.  I have a high potential for Crapicity today, though.  Yesterday too.  Want to help out?  ASK ME QUESTIONS!!  *G*

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Feed me Fodder…

For lack of anything particularly creative to say today, I’m opening the floor up to you, my valued readers.

What do you want to know?

I’ll answer any question (within reason).  It can be about personal stuff, special needs stuff…whatever you want to know about me :D 

You can ask as many questions as you like. 

The only rules are:

1. I reserve the right to refuse a question (like I said, within reason)
2. I may use them to create a full post, or use several in one. 
3. Make them silly, make them serious…
4. Have fun

Yup.  That’s it.  Feed me Fodder…I’m not entirely inspired today and would love the assistance :D

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We have liftoff!

It seems very, very strange to be excited over this, but I am.

After a year and a half of struggle and “hurry up and wait”, and almosts….we finally have received what we’ve been looking for.  A diagnosis.  Officially, permanently in ink on a doctor’s chart.  A letter being mailed so that we have a copy in our hands. 

M has OFFICIALLY been diagnosed with:

Autism (a mild form)
Russell Silver Syndrome

Like I said, it seems so strange to be excited over these diagnoses…BUT…it’s been such an uphill battle to reach this point.  WITH a diagnosis we can get more assistance to help her.  It’s opened up doors that were staunchly closed before.

The doctor said simply when I broached the subject of autism today “I can see it in her.  It is mild, but she does have a form of autism” (P.S. this made me thrilled since he sees her so rarely…but then again, he is a specialist for a reason :D )  He went on to offer me a letter stating it so we can “receive services easier”.  He also confirmed the RSS diagnosis, but that was less of a toss up. 

Other than the diagnoses, he was THRILLED with her growth (she’s on the charts!!  Woohoo!!), and development…and we have been officially taken off of the “regularly scheduled” roster.  In fact, we don’t have to see him until December now :D

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Onto the K portion of it all.  I explained to him the full situation.  All of her issues (thankfully he listened since it wasn’t technically her appt *G*)…and he remembered most of it (have I mentioned that I love him?).  And I told him about us receiving SSI and childrens for her, and the whole CF sweat thing…and, well.

His advice was to not do the genetic screening at this time.  He said that as long as she is continuing to make SOME progress (even if it’s small) he’d hold off…”because she has the diagnosis of CF with the two sweats…and that gets her qualified for services.  We do not wish to jeopardize that…”

Again…have I mentioned that I LOVE him?  He reassured me on the level of anything serious being wrong genetically…he’d be more concerned if she wasn’t making ANY progress.  He is also concerned about us maintaining our services (so is our Pulm.  I love these people). 

IF anything should change or worsen with her the ball is in the air again.  Until that time, we just wait.  I still don’t like that missing puzzle piece…but I’ll live with it for now and see how she ages.

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And that is the visit in one big nutshell!!  I’m happy happy…but it’s a bittersweet happy.  As E said “I didn’t ever want her to have this label.”  But as I pointed out…we’re living our lives BEYOND the labels, and we’ll continue to.

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My clever kid…and other news…

For mother’s day DC made me a card.  In Christmasy colors (green and red just happen to be his favorite colors), the front was colored with a simple “Happy Mother’s Day.”  I open it up to see this written on the inside:

Roses are red
Asphalt is black
When you sit down
Watch out for the tack

Yup.  Ain’t my kid sweet?!  *lol*  I have to admit, it did give me the biggest smile of the morning.

In other news, Miss M is singing her ABC’s now (sort of).  We get lots of mumbled letters mixed in with actual letters in their correct places!  She knows the order, she’s just trying to connect what’s in her head to her mouth.  But it’s so cute to hear her singing it.  I thought it would never happen.

K is officially two weeks away from having only 1 therapy a week.  Her PT’s last week is this week (she’s moving out of state).  Her ST’s last day before summer break (she always takes off for the summer) will be two weeks from today. This will be the last time we see any of these therapists as K will begin preschool in the fall. 

E and I are in hot debate on whether or not to get the genetic testing done on K.  If they aren’t able to find the CF gene defect, will we lose SSI?  For that matter will we lose all assistance we’ve gotten for her?  But will it bring us more answers to my never ending questions?  Should I wait another year or two?

The hair issue WILL be brought up at today’s genetics appt.  I don’t care if it’s K’s actual appointment…she WILL be mentioned as well.  My ped wasn’t concerned about it…but it’s getting worse on K now…and I wasn’t worried so much about hers before. 

Oy.  I feel like I’m back on the treadmill to nowhere.  And I just don’t know what to do about it.  Do I look for the answers, or just stay in the current “safe” zone with K.  We have the support we need…do I really need the answers NOW?

I’m feeling very naseous this morning…I’m also feeling pregnant…which is very impossible.  I think I may have to go down to CVS and tell them to shove the generic estrogen up their collective…*ahem*  I mean, ask them nicely to get me the name brand perscrip.  I feel preggers and have become very zitty again…I no like zitty.  On name brand estrogen I wasn’t like this. 

I’ll stop there though there is much much more.  I have set a deadline for the new layout by Friday.  Hopefully that will keep me from continuing to be lazy about it.  Today is bad…I have to go take workout clothes to E…and then we have ST and the genetics appointment this afternoon. 

I’ll fill you in on the geneticist and what he says about M when I return!!

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Another Voice for Early Intervention

If you didn’t already know, I’m a big advocate for Early Intervention.  I think there’s no better program for not only easing concerns about developmental delays, but for working toward resolving them.

Last month I asked Jenny of Special Considerations if she would mind telling me about her Early Intervention experience.  I was pleased to have her respond enthusiastically and quickly with a post about her son Jackson’s time with EI (he has since aged out).  I’m pleased to share it with you now…

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At six months of age, my son Jackson seemed like a happy, typically developing child.  Over the next few months though, I began to notice he wasn’t doing many things that other babies his age were able to do (sitting up on his own, babbling consonant sounds, feeding himself, holding a cup, etc.).  At his nine month appointment, our pediatrician also expressed concern that he was delayed and recommended getting an evaluation from ECI (Early Childhood Intervention). 

I experienced a range of emotions at that time: shock, grief, a sense of failure.  And then there was part of me that thought all of this was silly, that all children develop differently, and that maybe the doctor was just overreacting.  

But after reading and talking to some people who explained the tremendous benefits of early intervention if there is a delay, we went ahead and set up the evaluation with ECI. 

I must admit that I was skeptical.  ECI is a federal program, which means ECI agencies receive much of their funding from the government. And, honestly, I wasn’t sure that a government funded program would be that great of a program!  I felt sure that we would find better services through private therapy.     

Despite these concerns, we decided to give it a shot. After all, it was free (as long as our insurance paid a portion of the cost, we wouldn’t be charged anything for therapy services)!  Jackson was evaluated and qualified for services.  He began receiving physical therapy once a week and occupational therapy twice a month. 

The therapists who came out to our house were wonderful.  They were pleasant, professional, extremely competent, and seemed to love working with kids.  And, did you catch what I said, they came out to our house!  I cannot emphasize enough how nice it was to not have to load Jackson in the car every time he had therapy.  They were able to work with him in an environment in which he was comfortable and were able to show me ways I could work with him at home.   

Within two months, we could already see progress.  He learned to sit up and to crawl right before his first birthday – we were so happy for him!   

Around this time, an MRI revealed that Jackson had some brain abnormalities (microcephaly and reduced white matter) which meant his development would most likely continue to be significantly delayed.  As we grieved over this news and began seeing countless doctors to try to find more answers, we kept hearing the same thing again and again.  Each specialist we saw praised our pediatrician for recognizing these delays and recommending ECI as early as he did.  Though no doctor we saw could give us a diagnosis, they all told us that we were doing the best thing we could for Jackson by starting him in therapy so early. 

Over the next two years, we continued to receive PT, OT, and also speech therapy through ECI.  Jackson made tremendous progress and we grew to dearly love our ECI therapists.  There is no doubt in my mind that he received the best therapy services available. 

Jackson turned three this past month.  He is now walking, finger feeding himself, drinking out of a straw, and has about 15 word approximations with another 15 signs. Because ECI only goes to age three, we had to bid them farewell (and there were many tears shed)!  Jackson is now receiving a combination of private therapy services and public school therapy services.  We know he’ll do well thanks to the incredible foundation he received from ECI.  

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Weekly Winners - Mother’s Day (5/12/08)

Happy Mother’s Day to all the wonderful mother’s!!

For the week of 05/04-5/11/08
Weekly Winners is the brainchild of the wonderfully Sarcastic Mom, Lotus.

Burgeoning Beauty

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Eye of the Tiger

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Feed Me, Seymour!

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First Sprout!

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Lilac overflow

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Solitary Stunner

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Pouty, but Pretty

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Sing…Sing out loud…

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Hands across my heart

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I surprisingly didn’t have a ton to choose from this week…and the hands one wasn’t what I was going for…but overall a decent week :D

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Migraine…

I have a migraine….

And I was out most of the day so I wasn’t able to post.  Met with my girl, Indygirl, again tonight.  Had a blast, despite being unable to do what we WANTED.  Good food, walked through a mall - which I haven’t done just for kicks in YEARS.  Good times.

Now I wait for the drugs to kick in (you know my head hurts if I’m taking drugs for it) and then crash. 

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Broken balls = MAD Mama

I’m seeing red.  I’m furious. 

And being the letter writer that I am (I get it from my father), I’ve written a letter. 

To set up the letter, I’ll tell you that today we took our 1999 Explorer in to have and oil change and lube - and told them to check it out.  This is the trustworthy mechanic that gave us the Mazda.  He called a few hours later…and after some finagling and ruling out what isn’t LIFE THREATENING, we’re out $900.  The money isn’t the main reason I’m ticked (although that has a LOT to do with it)…it’s the fact that I’ve been driving this vehicle (with my children in it) for 3 months when it had a major life-threatening issue with it.  Here is a copy of my letter (not the final draft, but very close…I’m still tweaking w/ help of hubby) to the dealership we bought it from (no, there is NO lemon law in Indiana).

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Auto place

 

To Whom It May Concern: 

On February 13, 2008 we purchased a 1999 Ford Explorer from your company.  It was explained to us that the Explorer had been in the company’s possession for some time, and we were assured that the vehicle was in very good condition – that it was originally intended for Tom’s daughter.  Having previously purchased a vehicle with Pence we had no reason to doubt this assessment. 

Today I learned that I’ve, in fact been driving a vehicle is not safe.  That it hasn’t been safe from the day we purchased it.  

The lower ball joints were falling apart and it is by sheer luck that my children and I have not been seriously injured in the three months we’ve had this vehicle.  As I’m sure your mechanics will tell you, if a ball joint breaks it could cause a very serious accident.

This issue is not recent, or caused by over use.  We have only driven the vehicle 1500 miles in the three months (98,001-99,516).  It was caused by the vehicle sitting for some time, and would have been present at the time of purchase.  At a time when it had been sitting at the dealership since December, and any inspection during that time should have uncovered such a major issue. 

I’m disappointed that a local dealership I felt was trustworthy has failed me in a more major way than any larger dealership ever has.  You can rest assured that you have now forever lost our trust, our business, and we will spread the word to our friends and family.

 

 

 

Sincerely,

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  It’s not like the ball joints are something minor.  Hell, if the transmission had blown I wouldn’t be this ticked off.  But if a ball joint goes it can cause a MAJOR accident…and this is our “kiddie driving” vehicle. 

 

 

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Hai Ku - Lessons learned

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When teaching kids hot
Include more than your stove top
Think of your light bulbs.

One touch, few seconds
Blisters and redness emerge
Crocodile tears, too

Curious toddlers
Will not be contained to one
Pain experience

But protecting them
Is in our very nature
Screw the lessons learned

From pain and sorrow.
Keeping my baby from a
Blistery finger

Again would be grand.
The monkey’s too curious
It cannot be helped

She’s too curious,
Monkey-like, and very fast
She learns by doing.

I had so much more to lament on today, but given that it’s haiku Friday…I’ve kept to one subject.  Sorry feed readers that saw another post I have since pulled :)  It may be back in different elements later.  As you can see, my monkey decided to play with a lightbulb (regular, soft white, 60W bulb).  The image you see is the result.  All day she would look at me with big eyes and say “hurt”…I’d have to kiss it better and give her hugs to soothe.  Not fun, not my favorite way to spend my day.  But, she’s like me…she learns by doing, and she’s going to have many more pain experiences whether I like it or not.  *sigh*  So remember when teaching your toddler “HOT”, include lightbulbs in it!!

P.S. This is what it looks like 2 days later:

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For more Haiku Friday, go visit Jennifer.

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