Friday, November 23, 2012

Friday, November 16, 2012

BevMo Opens in Santa Maria In Style

So I had an experience today that just proves I am much cooler in my mid Thirties than I was on my twenties.  I went to the Grand Opening of BevMo in Santa Maria.  Yep that's right we are moving up in the world.

I dropped my girls off at the bus and went straight over expecting a huge line for their goodie bag, and nope. I was fifth in line.  Right behind the cat carrier someone had left to mark their spot.

My son was such a trooper and clearly bored out of his mind...but mom had made good friends with those people in line with her.  Yep no more introvert for me!!

The morning started off right with beverages provided by Coffee A La Cart.  Yes Bevmo paid for my Mocha this morning (in fact 2 of them).

Mayor Lavagnino joined us for this event teasing about those of us waiting in line for our alcohol.

John cheered up as the line began moving inside as it had started to rain!


Here are the happy employees of BevMo.  They clearly have already created a bond and it's nice to see people happy to be at work.  They even had a morning cheer to get us all amped up!!


Here is the Mayor after cutting the ribbon and the new manager getting his crew jazzed up!!



Here I am at the front with my mocha getting ready for my goodie bag.

So what was in it:

Quite a nice bag and a new beverage for me to try.

It was nice to be a part of something in the community.  I love that I didn't know the people in line with me, but we made fast friends.  It's nice to see businesses coming to Santa Maria.

So you may have missed the goodie bags but check out Bevmo located between Trader Joe's and Costco.  They are having a whole grand opening celebration this weekend, with products, vendors and samples. 

Just to note I was not asked to blog about this I just chose to and my opinions are my own. 

Thursday, October 25, 2012

Zevia Review

Recently I was selected to be a Mom Ambasador for MomsMeet.  This will allow my MOPs group to try various products and give the company our feedback.

My very first product review is for Zevia no calorie soda.

 
I was excited to try this one as we are avoiding sugar and certainly don't want artificial sweeteners.    We don't have soda too much but every once in a while we crave one or the kids ask for one.  I'd much rather give them a soda with more natural products, no coloring and sweetened with Stevia.
 
Stevia, unlike artificial sweeteners is simply a plant that has a sweet taste.  Evidence is showing that it may also aid in insulin reactions thus making it a good substitute for sugar.  Click here to see Marks Daily Apple

Mark Sesson wrote the book The Primal Blueprint which we are trying to follow.  He does a lot of research on subjects related to food and health and link above is what he found on Stevia.

So back to Zevia.



This past Monday my MOPs group got to put our taste buds to the test.  The results were mixed.  The fruit flavors taste like carbonated water with fruity overtones as opposed to a soda.  However, the cola and cherry cola flavored varieties reminded me of one of my favorite soda's.  A couple of the kids tried it and they seemed to enjoy them, which means this may be a way for parents to give their kids a once-in-a-while treat without completely rotting their teeth or filling them with artificial coloring or sweeteners.

The soda is not available everywhere just yet but here is their website so you can find where to buy them in your town.


As part of this program I was provided the product, recipes and health information but was in no other way compensated for my review.  The views on here are my own.

Thursday, October 18, 2012

My next party

Fleischmann’s® Simply Homemade® House Party



I am excited to host a Fleischmann's party through house Party.  Though not technically a part of my diet at this time, I am a bread lover.  Not many of my friends and family have cut grains out so when I have people over I love to cook homemade breads.

They are very time consuming though so I am excited to try a quick method for getting that homemade taste and feeling.  This will work out perfectly in timing as Saturday's are our Family game night where we invite our friends both with and without kids to join us for a variety of board games.  On November 10, our friends will get some homemade goodies and coupons to buy their own.

I will let you know how it goes and how the product is once I get to try it.

Tuesday, September 25, 2012

Saying Goodbye

This week has been a hard one as most of you know.  My dear friend Wren lost her battle to cancer this past Saturday.  For those that don't know the story, she was here in California for 3 years and 2 of those she was my MOPS leader.  She held my hand and prayed with me throughout Tom's battle with cancer. 

They were planning on their family being complete at 2 little boys, but despite all precautions she became pregnant again.  They took this as God's blessing and knew he would provide.  Quite suddenly Brian was moved by the Spirit to return to Texas for a new pastoral job.

Within a month of that move and at 25 weeks pregnant they discovered Wren had stage III Colon cancer.  They weren't totally sure at that point if it was only stage III because they couldn't do a CT scan, but from what they could tell on the MRI it was stage III.  They had to do a milder form of chemo that was relatively safe for their baby.

Grace Horn was born in August of 2011 with much rejoicing.  Though she spent some time in the NICU she was a fighter and quickly was able to go home.  They discovered that the cancer had spread though and Wren's fight got harder.  I won't go into all the twists and turns.  What I will share with you is that throughout Wren's battle with cancer her faith was steadfast.  She took time to look at other people's needs and to pray for them.  When it became clear that treatment was not helping she went on Hospice and on September 22, 2012 Wren went home to heaven.

It never ceases to amaze me that someone I knew for such a short time has had such a profound impact upon my life.  I keep shedding tears as my heart breaks for her children and those of us left behind.  The world lost a huge light on Saturday and I am sorry for those who never got to know her.  As someone said, she never knew a stranger.  She had this infectious smile that couldn't help cheer you from even the worst of moods.  I may never know the purpose in Wren's journey ending this way, but I do know she led people through her battle to Christ.

This morning in my sorrow a poem came to me...I literally sat down and typed it out.  I couldn't even see the screen for all the tears pouring down my cheeks.  But it has seemed to bring comfort to many.

So I will share it on here and I hope you will join me in saying goodbye to Wren and in praying for her husband and kids who now must face this life without her.






Wren’s Wings

Big blue eyes shining Bright
Met their Savior the other night
Babes at rest did not know
Their sweet mom an angel would go

Sweet Sweet Husband held her hand
Through every test though not their plan
God hold his hand now
As he goes on, but doesn’t know how

Friends all prayed from far and near
In hopes their pleas God would hear
The answers you see are not always yes
Sometimes the answer feels like a test

She knew her path was clear
We all still hoped it would veer
Her faith stood strong it never failed
And now heaven to her is unveiled

Sweet Sweet Wren traded her wings
From those of a bird to those that could sing
May her babies always know her love
For it will shine from above

We will miss you dear beautiful friend
Your spirit could fill a canyon with no end
Fly fly wonderful mother and wife
We will see you in the next life.

Wednesday, September 19, 2012

Confessions of Wonder Woman



Okay I know what you're all thinking, "just what kind of ego trip are we taking now?"  Well I am actually here to derail this myth.  You see of late I have been hearing a lot of comments directed my way along the lines of, "You are incredible in all that you do." or "I don't know how you do all that you do and so well." or even "no one else could do what you do."  Yesterday I had a play date for Alina and when they arrived I had to apologize for the state of my home as I am in the midst of reorganizing, and we all know that means more chaos before the calm.  She actually told me it was refreshing to realize I am human too as she has had this perfect picture of me and seeing a perfectly kept house would have been just too much for her.

What I want to know is how I got this reputation?  I am far from wonder woman and those who know me well know all my foibles and love me anyways...but they certainly don't think I'm Super Hero status, right?  I guess I'm doing a good job of putting my best foot forward for the world.

Here is my problem though, I really wish I were Wonder woman.  First of all, I'd look smokin' in a bikini, but more important I'd have the answers.  Right now I wish I had x-ray vision to see into my kid's minds to see what was really going on in there.  Maybe then I'd have a little patience.

Yesterday, I shared a post that talked about trying for a minute to know what it's like to look good on the outside but be falling apart on the inside, like those with autism, cancer, ADHD etc...  I shared it and realized this described my kids.  You see they are judged daily on the same bar everyone else is, but both my son and my daughter have to struggle to reach that bar.

As my daughter flipped out over a pretend game, once again, this morning and I felt myself losing my cool, yet again, I realized two things...1) this was becoming an all too familiar pattern and 2) I was not practicing what I posted yesterday on Face Book.

You see, I too judge my kids by what my minds eye sees as "normal" and want to scream "Why can't you be more like_____________"  But I realized, in a moment that literally took my breath away; it's not their fault, they have inner chaos that ___________ doesn't have.  Alina has demons she battles everyday and even still sees the world in such a positive light.  The same world that rolls their eyes and walks away when she throws a fit, or snickers when she counts items repeatedly, or guffaws when she tries to read out loud and freezes for no apparent reason mid stride.  This same world is the one which she sees for only it's beauty and prays for all those who have it harder than her daily.



I think God shattered Wonder Woman's steel heart this morning as I realize I have NO IDEA what is going through Alina's mind or how her body is feeling at any given time.  What I do know is that right now we are struggling to find balance for her.  She grew over the summer and thus a need arose for an increase in medication as she was having a few seizures.  But the increase in medication has made it nearly impossible for her to concentrate as she is so tired.  She took a nap nearly every day this weekend and she slept an hour longer in the morning, both accommodations are not possible in her normal school day. 

How about my son, who I've been exacerbated by lately as he will suddenly say really mean words or physically try to hurt someone?  Maybe he is having leg pains and at that moment doesn't want anyone near him, or maybe his tummy hurts.  Or maybe he's feeling tired but is three and doesn't want to admit he has to slow down.  I know some of these issues are common among three year olds and their parents, what I struggle with is knowing if my son actually has something more going on than the usual.

My son possibly has a disease that we will never for sure have a diagnosis for.  What we do know is we have two neurologists saying that he has many things that indicate he does have mitochondrial disease.  He has basically tested clean on blood work, but that actually doesn't rule anything out as there is no definitive test for the disease and you can test clean and still have the disease.  It is also possible that Alina is more evidence for the disease.  It is possible she either also has it (some children don't have symptoms until 10, then there is the adult onset version) or she has "soft signs" indicating it is in the family.

The scary thing is I want to live in this bubble that we have seen the worst we will. That is a possibility, but it is also possible that this disease will progress and my son and/or my daughter will "degenerate" before my eyes.  That is a thought I have pushed very far to the back of my mind.

If I truly were Wonder Woman, would I be able to tell when my kids are acting out due to physical or psychological pain versus just misbehaving to get what they want?  I would hope so.  But this is a striking reminder that I am no Wonder Woman, because for my kids I just don't ever really know the answer to that. 

Sunday, September 9, 2012

My Mom...My Hero

So, although it's not mother's day, I've been reflecting a lot on my mom lately and our relationship.  You see if you didn't know, I am the youngest of 8, and as you might imagine when you get that many personalities in a room it gets interesting to say the least.

My mom and I have had an interesting reltationship and most of my siblings (if not all) would classify it as a me being spoiled type of relationship.  I used to feel the need to apologize for my birth order and some vague appearance of getting more than someone else.  As I've gotten older, I have realized that appearances are just that, and you can "other side of the fence" yourself right out of perfectly wonderful relationships.

I love all of my siblings in different ways and they each provide a unique perspective on our childhood.  The one thing I can say is that being the one born so far from the rest, (the next sibling up is 7 years older) I always felt a slight distance to my siblings.  They have all these memories together and I am but an after thought.  I don't share in the collective memories.  As children on basically a working farm, we each had to pitch in, and as the youngest the load got a little heavier each time someone moved out.

These used to be things I was jealous of to be frank.  My siblings however, saw a different picture.  They saw their youngest sister get all the love and attention to myself, that themselves craved.  It's not that my parents didn't give them that, it's just there are only so many hours in the day and when you are dividing by seven, it's a smaller piece of the pie, than when you are dividing by1one.

I think in highschool I resented that single minded focus my parents could devote to me.  You see I got away with nothing (not that I tried to do much really).  So, for a time my mom and I fought a lot.  At this moment I really could tell you over what we fought, but it seemed important at the time.    Being a mom I now admire the things I used to be disgruntled over.  You see my mom had the audacity to make me wash my own clothes, cook my own breakfast and make my own lunches.  I also was in charge of some family dinners.  Not to mention all the animal related tasks that came with living on 90 acres with lots of horses, dogs, cats and even some chickens.

When I went t o college, I was shocked at how few held these skills.  They could all cook a bowl of cereal, but beyond that was asking a lot. And laundry?  Well that's what visits home were for.   My parents launched me into the world ready to be functional in it, but still provided a net in case.  I am now taking a page from my parents play book and trying to teach my kids what it takes to be in the world.  You see we do them no favors when we do EVERYTHING for them. We launch people into the world that then EXPECT the world to give them a hand, instead of people who look for ways to offer a hand.

A week ago I began the training task by having Bella make our family a dinner.  I set rules.  There had to be a fruit, a veggie, a protien and she could pick a side if she wanted.   We pulled out the cook books and she figured out a menu and made her shoppping list.  I then took her to the store and showed her how to shop within a budget.  Then the night of, I helped her in the kitchen, but she was the chef.  She got help with things like the big boiling pot of water, and cooking tips, but the accomplishment was all hers.

The pure satisfaction she took at knowing she could do it was eye opeing for us both.  She knows there's a lot to learn, but she wants to learn it.  She then took left overs to school, and proudly let her friends sample it and the boost this has given her is more than I ever hoped for.

The new rule in our house...do not ever say "I'm bored" we will find something for you to do and it may just well be pulling weeds or scooping poop.

My mom is still teaching me and this also makes her my hero.  You see she is on her last year as City Council Member in Page, AZ.  I had no idea until I spent time with them this summer all that my mom has accomplished in her tenure.  From dedicating city trails (thus ensuring their future), to cleaning up the trash (literally),  to abating substance abuse problems, not by punishment but by education and offering alternative activities, to actually balancing a budget on the heels of major cuts in revenue.  She has taught me that when you see something that needs fixing, you don't wait for someone else to step in, you take the initiative and you do it.

Thanks mom for all the lessons you've taught and for being my hero.

Thursday, August 30, 2012

Summer Days...

Well, I was sure quiet this summer.  I guess it went with my last post about Alina.  But our family was so much enjoying our summer break, who had time to Blog.


I already posted about our San Jose trip, but we didn't stop there.  We had oodles of activities.  Our family was involved in our local Relay For Life as Team Eeyore.  Both of the girls were a part of our team.  Their main goal was to stay awake for midnight pizza.  Poor Alina made to 11:30....and no amount of my nudging would wake her up.
 
 
We had a couple of weeks of swim lessons in which all three did great!!  It was nice to have those before the last leg of our summer.  The girls also attended a VBS at Grace Baptist.  They do a wonderful job every year of reminding my girls of all the gifts God has given us; all the beautiful things in this world He made for us to enjoy.    This was a great reminder before we set out to enjoy some new scenery.
 
John's brother tied the knot in July and this was the launching point for our fun filled adventures.
 
The five of us headed down south to Del Mar beach, which is in Ocean side on Camp Penelton.  Thanks to Nana and Julianne the whole Fanshier family got to spend 4 nights in bungalow's on the beach.  We literally could walk to the water...it was great.  Alina tested her bravery by attempting to boogie board.
 
 
While Bella attempted to master the skill
 



Alina made it her mission along with cousin Eva to hunt sand crabs...they found some huge ones which creeped me out.




After 4 beautiful nights and 5 fun filled days of cousins playing  the sun set on this leg of the trip.

 
 
We drove from Del Mar to Redondo Beach where the kids and I spent the night with my brother Dave.  Which was fun as we don't get to see them much.  In the morning my brother took us to the airport to board our flight on Great Lakes airline.  Now you may not have heard of this company, that's because it is VERY small.  It seats 18 passengers.  It was hilarious seeing this tiny plane next to jumbo jets.
 
Now I need to state here that I am petrified of flying.  This being said, my heart dropped when we landed in our first stop and we were told there had been a malfunction in flight so we would not be able to continue on our next leg.  Okay this was not what I wanted to hear.  They fed us a very nice lunch while we waited to hear what would happen.  You see unlike a major airline, there were no back up planes.  So they chartered a bus. (Picture planes, trains and automobile's here)  well it turns out the malfunction was in the Transponder which does not affect the plane function at all...just it's ability to communicate with the towers.
 
Right after we loaded our bags on the bus, they got the all clear to fly at a lower elevation, making a transponder unnecessary.  The kids thought it was a grand adventure...I was just hoping we'd land safely.


We had seemingly endless adventures while in Arizona and for sure enjoyed the time away from the hustle and bustle of our every day life as well as spending quality time with Grandma, Grandpa and Aunt Julie. 

We swam in Lake Powell nearly every day, and though we mostly chose the same swimming hole, the skyline treated us to a new show daily.


The kids even got to try their hand at kayaking.




After attempting to kayak with Jasz and hitting him in the head with the oar...I decided to let him try on his own...which he LOVED!!
 
 
We spent a day exploring the North rim of the Grand Canyon and boy was it beautiful. 
 
 
 
Here the kids pose with Grandpa and Aunt Julie while overlooking the Grand Canyon.  We even had lunch at the Grand Canyon Inn, which boasts a restaurant that literally hangs over the edge of the Canyon...and yes I enjoyed myself.
 
 
On the way back from the Gran Canyon we discovered the Stone Houses.  Which are homes carved out of the huge rocks, complete with stone beds, stone fire pits and stone kitchen counters.  They weren't occupied by the same person all the time, rather they were used as stopping places for those traveling across the desert.  The kids decided they were the perfect little homes to play pretend in.
 


The kids even got to dip their toes in the Colorado river, and though the air temperature was quite warm, all three were in agreement that the water was COLD...Brrr!!


 
One of the last things we did while in Page was take an Antelope Slot Canyon tour.  These canyons are formed by the flash floods that happen in most desert areas.  The landscape created by the swirling and rushing water is beautiful.  These canyons fall on Navajo territory so we had to pay for a tour, but it was worth it, even the kids enjoyed the scenery.


This one is called the Torch.
 
                                                            The kids pose in the shadows and colors of the Slot Canyon.
 
 
On the way home we took a scenic detour to explore Zion National Park.  Zion is a beautiful canyon with vibrant colors of red and green.  It also is home to one of the largest tunnels carved literally through the mountain.  It was a lovely place visually and looks like it would be quite a place to camp.
 


We made our way home and thus have started the rushed reality that is our life.  It was nice to escape, but it is also nice to be home. 

As the song says..."Thanks for the Memories."

 
 

Friday, July 27, 2012

Pillsbury Baguette Chips Review

I was super excited to be asked by MyBlogSpark to try the new Pillsbury Baguette Chips.  I have been looking for a new, better snack for my kids and this fit the bill. They have less fat and are tasty.  So what did they send me?

You can head over to the Pillsbury Website to see their ideas and information on the baguette Chips.


The kiddos enjoyed both flavors, although Alina prefered the Cheddar Sun-dried Tomato as Tomatoes are her favorite.  Izabella on the other hand prefered the Italian Cheese and Herb, not surprising for my cheese lover.

Try them for your self with a discount by  clicking here

General Mills provided me all product and information through MyBlogSpark, I was not paid for my opinion.


Summer Bliss

Well, I guess I have been off the Radar as of late...that's what happens when the older two are home full time.  I no longer have a nap time of uninterrupted silence, nor have I suffered the insomnia which gave me the extra time to blog.

The Fanshier house has been blissfully busy.  We began our summer with a bang.  The kids and I spent 10 or so days in San Jose.  I will say for all local peeps, the family membership to the Santa Barbara Museum of Natural History is the best buy in town.  Not only do you get into the museum and the Ty Warner Aquarium, as well as getting into all planetarium shows for free..it comes with all kinds of reciprocal benefits.  So, we got to see several sights in San Jose...absolutely free.

 The Jungle Started off our excitement and each kiddo found their favorite activity (This was not a reciprocal spot, but it was fun)
 Just Hanging out!!
 We spent a day at the San Jose Tech Museum.  Below the kids are riding the virtual roller coaster they made.
 Ahh the rides at Happy Hallow.  What a perfectly sized park for my three, especially now that they can all ride the rides.. Jasz was hilarious on the Roller Coaster, he just belly laughed the entire time.
Now our summer has been fairly non stop, we've had swim lessons and Vacation Bible school and we threw a wedding in there too. 

We also all were involved with Relay For Life.  Though Originally I started the team in Tom's honor, this year I walked for my sweet friend Wren who is battling Stage IV Colon Cancer.  Her strength and courage make me feel weak and frightened in comparison. 

I suppose this entry is less deep insight and more a touch basis...I just didn't want people to think I've forgotten them.

Oh yes, I almost forgot..I taught myself how to make Jam this summer and spent several of my days cooking up various flavors of the yummy stuff.  I made Strawberry, Orange Marmalade and a Lemon Marmalade.  Good stuff and not as hard as I expected.  And I felt a sense of accomplishment when I was done and could count up my jars.  Sounds silly maybe, but sometimes we can measure success in how we feel.  Have I made millions this summer?  No.  Have I cured a disease?  No...But I have given my children that sense of summer bliss I remember so fondly from my childhood.  The endless days and never knowing the excitement the next day would bring (even if it was just visiting the local orchard.)  It usually meant visiting with at least one relative.  I am glad I can give my children Summer bliss.  Thank-you God!!

Tuesday, June 5, 2012

BlogSpark and Genreal Mills Cheerios Give Away

I was very excited when a package arrived at my door step and it was two sets of the new double boxes of General Mills Cheerios!!   My kids love cereal and I love a good deal.  Costco has really good deals but one thing that always was hard was the way the Cereal was packaged.  One big box with two bags in it.  So once we finished one bag you had to keep the bigger box to continue having the double protection against staleness. Plus pouring it often got messy as there was no box frame preventing spillage.

Cheerios came out with a solution: The double box. It is Two boxes packaged together but easily taken apart.  This eases storage and pouring, which is important when you have kids wanting to pour their own cereal.

Also by changing the packaging Cheerios was able to accomplish the following:

  • By reducing the amount of air in each individual bag, these enhanced containers fit 10% more cereal than before and use less packaging
  • While each box contains more cereal, packaging material has been reduced by over 200,000 lbs, saving 1,000 trees and taking 130 Cheerios trucks of the road, decreasing CO2 emissions

The following video gives you all the details:













Now you too can enter to win your own double set of double boxes.  Simply leave me a comment below telling me why you like cheerios and someone will be picked by using random.org.

The deadline is approaching fast for me to submit the winners information so the drawing closes at midnight in June 16, 2012.

Disclosure: Cheerios cereal, information and giveaway have been provided by General Mills through MyBlogSpark.  I have not been paid for this posting.


Sunday, May 27, 2012

Quiet

Things are going well in the Fanshier house these days.  We continue to see so much progress with Alina.  Where she used to read below grade level, she is now excelling.  She is also learning what things make learning hard for her and when she needs to make changes.  We have a 504 plan for her that allows her to tell her teacher when things are overwhelming in the class room so she can go to the library to work.  Not that we needed a plan for her teacher to be doing that...it's just nice to know there is a record of it in case.

The ironic thing that never ceases to amaze me is the child that can scream the loudest is also set off by loud noise.  To me that's like an elephant being afraid of heights.  How can someone who screams over nothing have loud noise as a seizure trigger?  I don't know the answer to this but I know it's true.  Alina also knows it to be true.

The other night for example, we went to a Knights of Columbus dinner. Now never underestimate the ability for a group of older men to get loud when alcohol is involved.  The noise level in the room creeped up and we watched Alina struggle more and more to eat her dinner.  Finally, daddy leans over and asks Alina if she's okay.  Alina responded with, "no, it's too noisy I need to go outside."

So we took turns walking with her outside to get her out of a trigger zone.  So irony is not lost that the loudest of our three also needs the quietest atmosphere....who knows maybe she started yelling to compete with how loud the world seems to her?

Alina had her MRI this week and frankly I was worried that Missy would not be able to hold still long enough as she tends to be a wiggle worm.  But with much coaching I watched my little girl take on a task that many adults fear.  She climbed up on  the table, got slid into the tube, closed her eyes and willed herself to stay still and calm.  She ultimately was able to sort of fall asleep. What a trooper!

I realize now in my interactions with Alina that I had kind of ignored her for years.  I gave her love, I gave her time, but I think a part of me got tired of her being different and having no answer and no resources on what to do.  Last year her teacher told me she was the most empathetic child she had ever met and I was blown away by this observation . As well as embarrassed that I never saw that in her.  I was too busy dealing with sibling spats and her pacing and her need for repetition that I couldn't see anything else about her . After that I tried really hard to see it.   It pains me to admit that I was just so frustrated I failed to see all the good that was in her.

She used to struggle so badly to get a thought out and I never knew why, but I knew it was annoying to hear the same sentence over and over with no completion.  I knew her teacher would tell me Alina had lots of stories and details rolling in that head of hers and at times I heard them, but not as much as her teacher would.  All I heard was fighting and homework frustration and pauses mid sentence.

I have seen the beauty in Alina though and it kills me to know I almost missed it.  A couple of months ago Mrs. Wilson was having a tough time in class and just frustrated with kids not listening and almost at her wits end.  She told me that amidst the chaos, Alina walked up to her and sensing everything gave Mrs. Wilson a hug , then tells her, "You know you are a great teacher!!  I know it probably feels like you're not sometimes because the kids don't listen to you or they are being loud, but you are a great teacher."  Mrs. Wilson shared the story with me because at that moment she had been feeling low and like she was not a good teacher.  Alina sensed that and on her own boosted up her teacher.  Alina does these kinds of things all the time.  What I thought was an almost unfeeling child is really a child who listens more than you realize.  She reads body language, tone of voice and your words and she can tell what is going on.

I try to not berate myself, for not doing more for Alina earlier.  I have found out that this type of seizure disorder is often missed and usually is not discovered until 9 or 10.  Which means for most kids they have had years of being labeled as a goof off and years of missing vital information in class.  Often it is difficult if not impossible for them to catch up. 

We really don't know if her odd behaviors started because of the seizures or just worsened because of them..so who knows how long she's been having seizures.  It pains me still to know how lost my little girl was.  She felt like she was drowning and no one was able to throw her a rope.

The good news is we found it now not three years from now and she is doing wonderfully.  I also notice something new in my daughter which is sooooo nice to see.  She has confidence and her eagerness to learn is back.  She doesn't take for granted what we all do.  She appreciates being able to focus and therefore perform daily tasks with ease.  The other day she spent an hour reading in the play room.  She laid out several books and read them each in turn.  She used to do this but she would make up the words.  She couldn't focus long enough on a sentence to read it through so she had given up on that.  She for a while would only read books with 2 word sentences (probably all she could focus long enough on.)  Now my baby READS those books.  She's not pretending to read them. She also knows the difference and will announce proudly that she read them by herself and got all the words right. 

We take so much for granted and Alina has at such a young age learned the lesson not to.



I am so proud of my Alina and how far she has come in such a short time.  I also am proud of who she is as a person.  She has taught me a lesson.  Sometimes, in the quiet is where we learn the most.  Sometimes in the quiet is when we understand people the most. Sometimes we all need quiet and we need to recognize when that is.

Monday, April 30, 2012

The Stare Monster

Last I wrote about Alina she had just been diagnosed with Epilepsy.  So many things went through my mind, one of which was that it couldn't possibly be true.  I walked around in a dazed state for 3 days, then cried for my little girl, and then accepted what was.



Over the past month I have noted some changes in Alina.  Her teacher has been reporting a more on task girl needing much less redirection.  I have noticed that with homework too.  Also, there were always concepts on the homework that Alina was adamant that Mrs. Wilson had never taught.  I mean she would be reduced to tears because she didn't understand why Mrs. Wilson would give her homework on something she hadn't taught.  I was also getting quite frustrated at how often this happened and we would teach her the concept.  We are not experiencing this any more.  Home work is so much easier.  I had set up a bead system.  Rewarding Alina with beads when she stayed focused on her homework.  When her little container got filled she got a reward.  Hind site tells me it is an unfair system. She doesn't have control of her focus ability.  The first day back from spring break Alina wrote two pages in her journal without help or redirection...a first this year. 

People kept asking if Alina was aware that she was epileptic and what that means.  So I finally asked her if she knew why she was taking the medicine.  She shook her head no.  I tried to simplistically explain seizures to my 6 year old.  I then asked her if there were times before the medicine when she didn't know what was going on around her?  She began to shake her head but then stopped and said, "Yeah that happened a lot and it was scary.  But it doesn't happen as much now that I'm on medicine."

Let me briefly take you on a journey with Alina.  You see when she was three we started noting some odd behaviors.  She would pace in circles, almost unstoppably.  I had been told at the time that some kids have trouble focusing and this was a way they focused themselves.   She also began her OCD type behaviors (eg., lining up pencils in a certain order, rituals regarding daily activities-if it didn't happen a certain way it was the end of the world, ...etc)  I took her to our family Dr. worried that my daughter might have some form of autism.  He didn't think so.  He indicated he leaned to OCD more, but also said that 3 year olds in general have that tendency.  He suggested watching her and seeing if symptoms eased as she got older.

They didn't.  They didn't get worse until last year though.  We attributed it to Alina grieving her Pa's death as she had had a delayed reaction to it.  I had spoken with Dr. Carter (the pediatric neurologist seeing John and now her).  She had suggested watching her closely and possibly taking her to therapy.  Of course dealing with Jasz' issues, I put her on the back burner.  This year she was counting everything, she couldn't wash her hands or brush her teeth without me checking to make sure she did a good job, she would color in a certain order.  Trina, being my resident expert in child behavior, suggested that Autism may still not be off the table.  She also said we need to nip the behaviors in the bud, showing her that things will be okay if she doesn't do those repetitive things, otherwise it would certainly worsen.

This year school was so much harder for Alina.  She couldn't stay on track.  She had to have someone next to her at all times and Alina wasn't enjoying it.  She despaired at how hard things were for her to complete.  She saw how much work the other kids could do and how little she could finish.  Almost every classroom assignment was modified/done orally.  Her teacher and I felt like we were losing her.

Then we find out she is having seizures.  School improved and so did most of everything else.  Alina herself notices the difference.  She played a game with Jasz the other day where there was a monster and if he looked at you all you could do was stare...they called him the stare monster.  I found it interesting and sad. 

It wasn't until last week when Dr. Carter asked me if her OCD behaviors were lessening that I really thought about it and realized..OMG they are.  We are seeing WAY less pacing, and the counting she's doing is more like casual kid counting not repetitive or absolutely necessary.  She has completely stopped asking me for confirmation about her hands and teeth being clean.  We've also noticed fewer tantrums, although they still happen.  She is in general more comfortable in her own skin.

For us the hard part about these seizures is distinguishing between a seizure and normal 6 year old behavior.  Dr. Carter agreed but also suggested that some of those tantrums are likely seizure related.  I had noticed that Alina was for sure having them in the car still.  I asked Alina if she felt okay in the car and she said, "well the medicine is working for me but not in the car."  So Dr. Carter increased her dosage as seizures can cause brain damage.

Post appointment we had to have blood drawn, to make sure the medicine isn't causing negative bodily affects.  She was so brave and did not shed a single tear.  She in fact mid draw looked at the tech and said, "Don't take all my blood okay."  I love her wit.  We will soon also be having an MRI.  Dr. Carter doesn't believe we will see anything on the scan but we need to be sure.

The stare monster is what made me want to write this post.  I can't imagine how scary Alina's world has been.  Imagine not knowing what was going on around you at least 70% of your day.   People would be in different places, the teacher was talking but you can't remember about what,  not remembering what word you were reading or writing.  The stare monster seems to explain her OCD behavior. There was very little in Alina's world that she felt in control about.  These few things were it and she was holding on to them with all her might.  It makes me want to weep to think about it.  But Thank God her teacher is observant and I am willing to push.  A side note: Mrs' Wilson's son is an EMT and he commented that she was so much younger than most people get diagnosed with this type of seizure.  Usually they are so much older and have missed so much more and have had brain damage caused by it.  He complimented the two of us for keeping the communication lines open and being willing to look at what is going on with her. 

Also of note, the report from the school had indicated a high chance of Alina being ADHD.  Dr. Carter mentioned last week, "do you see how easy it is for kids to get mislabeled?  Then they get put on ADHD medication and it doesn't work so the dosage gets increased. See how easy things get missed?"
Scary.

Well hopefully we'll be saying goodbye to the stare monster!!

Thursday, April 19, 2012

When you don't know the difference

A few of you may know that my son Jasz had surgery.  Most of you didn't know the reason why as I didn't want my son the butt of future anatomy jokes.  A recent discovery made me realize though, that the correction which was made was not a cosmetic thing.  You see my son was born with a condition called  Hyposadias.  In laymens terms he had two urethral openings.  Only one was functional and it wasn't even noticed until he was nearing two.  At the time the Dr. who discovered it thought there were no pediatric urologists locally and we would need to go to LA.  He did not seem alarmed however, so we kind of put it on the back burner.

It wasn't until a friend was talking to us that we discovered there was a good pediatric urologist right here in town.  I took him in and it was about a two month wait to get in.  He looked at him and said sure enough he does.  He said it required surgical correction and it was a medical necessity.

I didn't understand why it was a medical necessity though, but trusted his expertise on the issue.  I doubted myself right up to the day of the surgery. Was I just having my son mutilated, was it really necessary?  I had nightmares over it.  Every worst case scenario went through my head. The only thing I had noticed was his pee stream angled up...I didn't think that a medical urgency.

Thank God my husband took the day off to help his basket case wife.  I could have done it alone, but it sure nice to have him there.  My son had no fear and was his usual charming self.  After the surgery, he even groggily said that the Dr. was nice.

The end of that day he was hurting and we had to give him the pain medicine they prescribed.  Come the next day we no longer had to.  It stung when he urinated so he could tell when he had to pee.  He mentally prepared for it and by the end of the second day was peeing on the potty like a big boy.

Once the intial pain left, there were a few things I noted.  One my son told me, "the Dr. fixed my penis"  Okay well that tells me he noticed a difference and it was a good thing.  Secondly, my son used to wake up with a beyond saturated diaper in the morning.  I mean the diaper, his jammies, and the bed soaked EVERY morning.  I was doing laundry A LOT!  I also had noted when he was around 18 months that his morning urine smelled like Maple syrup.  Well we had him tested for all kinds of things based on that and all came back negaitve. No answer to that question that kept nagging me, "Why?"  Well after the surgery, that morning smell went away as well as the overloaded diapers. 

At the post op appointment I asked the urologist about this.  He told me that for Jasz this surgery was medically necessary.  When he began operating he found the problem was more severe than originally thought and he has a SEVERE blockage.  That means when he peed it likely hurt every time.  It also meant that he was likely unwilling/unable to completely empty his bladder.  Likely the urine was backing into his kidney's thus creating that sweet smell and the overloaded diapers in the morning.  Likely the night time was the only time his body could relax enough to emply the bladder.

I have been pondering this for a couple of weeks.  There were times when my son was less than a year that he would scream his head off uncolsolibly all night long.  It would happen about once every couple of weeks.  He would sleep well for two weeks and then we'd have the scream night.  After we learned of his muscle issues, I thought "oh he must have been having muscle pain...poor guy."  We had taken him to the Dr. many times and no answer was ever found.

Hind sight happens again and I wonder if when my little guy was less than a year the pain of peeing was keeping him up and after a year he got used to it.  So by three he knew nothing else. It was just how life was to my little guy.  He never told us it hurt to pee...he assumed it hurt for everyone. 

I really have a better understanding of how kids and people in general cope with many horrible things.  When you know nothing else, that's just how life is.  I've heard that said by many a victim of child abuse, they assumed it happens in everyone's home.  They didn't know the pain was unusual.

I feel great now knowing we made the best medical decision we could for our son.  I am so thankful he doesn't have to hurt like that anymore.  I looked up my sons issue on google so I could remember what it was called and stumbled on a posted question by a mom whose son is my sons age and has the same issue.  The responses boggle the mind.  Things like, you should do nothing as it will cause trauma and nightmares and he'll blame you; or you should let him decide when he's old enough to; or it's not causing harm leave it alone.

Well speaking as a mom whose son had that issue, we thought our sons was minor and not really causing a problem either.  I also wouldn't leave medical decissions up to a Yahoo question board.  But realistically we didn't know anything was truly medically wrong in that department. We didn't know the difference. 

Thursday, March 29, 2012

What?

You may think this is a silly title, but it is exactly what went through my head after talking with the Neurologist Tuesday.  You see Alina has been struggling in school for a few reasons.  The biggest is that she can't maintain focus.  She will just stare off into space.  She hardly gets any work done in class and what she does get done has been modified. 

Alina is aware she's not getting the work done and not one person felt it was a work ethic thing. Her teacher felt she might have some processing disorder.  Considering family history some sort of learning disability would not be strange at all.   We had the school SST meeting and I found out that she is zoned 60-70% of the time.  It's more than zoned because she is hard to get back to reality.  Her teacher had mentioned that she would gently call her name 4-5 times and when Alina "came to" she would be startled.  Almost like a "where did you come from?" reaction.

At home we were having some of those types of spells, I don't think as frequent, but still present.  The school psychologist requested a neurological exam to rule out anything medical.

So Tuesday I took her to see Dr. Carter.  Dr. Carter did a full work up and said she can tell Alina is super smart.  Well yes, if she is missing 70% of her day because she's zoned out, yet she still grasps the concepts?  That's pretty good.  Interestingly, Alina's patellar reflexes were almost as difficult to get as Jasz'.  The rest were normal but that one was difficult.  Alina showed signs of poor balance as well.  Also, in school she has difficulty with her fine motor skills.

After an hour Dr. Carter said, "you know what let's do an eeg and I can do it right here."  So Alina got the cap on, which was quite a process.  They had her lay down and do several things, talk, hyperventilate and relax while lights were flashing at her.  Eventually Alina got so comfortable she fell asleep.  Then we woke her up and Dr. Carter read the print out.  She told me that during that sleep time, when Alina should have consistently calm brain waves, she had two seizure like episodes.  So my reaction, "what!?!"  She believes Alina is having Absent Seizures.  She has prescribed her Depikote.  She also prescribed her Carnitine.  Here is the interesting part, that the scientist in me finds fascinating...Alina is showing "soft signs" of Mitochondrial disease.  Siblings and relatives of Mitochondrial patients will often show these types of signs.  In other words, they don't have the full blown effects, but they have some of them.  Seizures, learning disabilities, diabetes, short stature, fatigue, and headaches are some of those "soft signs".  I am not sure that Seizures is the only thing going on with Alina, only time will tell us that.  I feel like our family would be an interesting case study, but I don't want to be a lab mouse.

Alina has started her medication and we shall see.  Overwhelmed would be a good word to describe me. It is interesting to me that as humans instead of turning to those closest to us we feel safe enough to lash out at them.  I have been snappy and cranky of late.  I totally get that things could be so much worse, but it took me the rest of Tuesday and yesterday to wrap my head around what I was told on Tuesday. 

I think I feel a little like I'm on a runaway train....we've started so there's no turning back.  The school immediately wanted to know what accommodations they need to make for Alina...do I look like a Dr.?  I have no idea.  I don't think we even know what is triggering her seizures.  I do know Dr. Carter said that computerized testing is inappropriate for her...so no more NWEA for her?

Her teacher told me she talked with the PE teacher and all those who work with her....things I never thought of.  So today I need to get my head back in the game.  I need to push forward.  I can not be a tree and stand still. 

Most of all I just don't want things to be so dang hard for my kids.  I want them to be able to succeed and we will get there.  One thing is for certain...I have kids with determination and grit, personality for miles and BIG BIG Hearts.  I always said I would rather raise good people, then the smartest people...I am getting to see both in all three of my kids.

Monday, March 26, 2012

Jesus Loves You

If only I had the absolute faith my children have.  I just had to share a story that shows the true heart of my little Alina.  She came home from school and said to me, "Do you want to know why I sing Jesus songs on the playground while I swing?"  I of course wanted to know.  "Well, you see...I sing them really loud so all the kids can know that Jesus loves them.  Especially the kids that are mean because they need to know most of all that it's okay, they don't need to be mean because Jesus loves them just like He loves me."

So after I pulled myself together I told her she was absolutely correct.  How easy it is for us adults to forget that Jesus loves EVERYONE!!  He died for all of our sins.  So just because someone is on another side of an issue, doesn't make them less worthy in God's eyes.  Why can my six year old see that more clearly?

I love that God gave me the children He did...I learn something from them every day.

Saturday, February 25, 2012

God's Compliment

It seems that life intends to never be dull for this family.  I had a case of the "Why me's" the other day, but pretty quickly realized why me.  I have been endowed with skills and abilities that have prepared me for this journey with our family.  I know I am far from perfect, but I think I'll choose to take trials as a compliment.  It does my heart and body better than griping about them.

So why, you may ask, did I have a case of the Why me's?  Well, Jasz has been referred to the genetics department at Stanford to maybe finally get a for sure diagnosis.  As well as to make sure he is on the right supplement "cocktail".  Frankly, watching my boy over the last month I have no worries for him and am not entirely sure we need this step.  For example, between last Saturday and Tuesday he figured out how to do a perfectly straight and well executed sommersault.  He is getting more and more balance by the day.  Though he still has off days at times, I feel like we all do.

Regardless of his progress though, I am following Dr.'s advice and proceeding with our next step.  In speaking with the genetics department they wanted detailed information about our whole family.  I casually mentioned that Izabella was short, but hormone tests had been done and all appeared normal.  The lady paused then asked, "So, I assume you took her to an endocrinologist and have had a bone scan done, just to rule out anything."  I paused and responded with, "No but our family Dr. seemed unconcerned.  He feels like she'll just be short."  "Well, is there a family history of that?"  "My great-grandmother was short."  She responded with, "That's too far back genetically speaking.  People are taller than they used to be because nutrition is so much better.  If she were my daughter I would take her to see an endocrinologist just to be sure. you see, she is in an important window and you don't want to miss it."

We finished our business around John, scheduled an appointment and hung up.  I then printed out a growth chart and marked Izabella's place on it and realized that she is an entire graph square below the growth chart.  Part of me feels like she has always been below the chart so what's the worry.  The other part of me does not want to ignore it and then find out later it caused problems for her that could have been prevented.  So off to another Dr. we go.

Meanwhile, we had requested Alina have some school testing done because she is having a really hard time focusing in school and some of her more "OCD" behaviors have increased.  We had her SST meeting on Friday and it was recommended we take her to a pediatric neurologist to rule out anything medical.  Good thing we know a good one in our area who knows and cares for our family. 

Overwhelmed and anxious would be the two words that could be used to describe me right now.  I finally felt a sense of peace because Jasz is on an even keel right now.  Perhaps all of this waited and bided it's time so I could more fully devote my time to it.  Do other parents have these kinds of worries too? 

I realize now, I hope they do not.  God has provided every time and we will be okay.  There are other's who do not know God and would be less equipped.  Whose kids might not get the fight my kids will get because their parents don't have the will.  So I guess I will take it as a compliment and trust in my abilities.  Having been given that trust I will proceed forward and find our answers.

Wednesday, January 25, 2012

General Mills Review and Giveaway


We were so excited the other day to come home to a package from BlogSpark.  In it were five boxes of General Mills cereals for our family to try.  My girls were super excited as you can tell, 






This is what was included:


We are always looking for ways to get good food into our children.  One recent suggestion for eating healthier is to switch to foods containing whole grains.  This increases fiber intake and improves digestion.  
Cereal's with the white check make it easy to identify which ones are made with whole grains.  
 
For my kids it was love at first bite.  We often use cereal as a snack or even a dessert and getting them more whole grains in the process is all the better.
 
According to Dr. Travis Stork, emergency room physician and host of “The Doctors,” identifying whole grain products can be challenging. Shoppers can look for nutritional cues on the front of the box, but they need to read the ingredient list to know if they are getting enough whole grain. Ingredient lists detail ingredients in order of prevalence, and if the words “whole grain” are followed by a grain like wheat or oats, it means the food contains more whole grain than any other single ingredient. Here’s how to determine if your cereals have whole grain as a first ingredient:

With all the health messages facing grocery store shoppers, it can be confusing to translate what appears on food labels into nutritional needs, and hard to determine which foods have a meaningful amount of whole grain. Dr. Stork has some additional recommendations to help you include whole grain easily into your diet. They include:

Start Early! The Dietary Guidelines recommend people get at least 48 grams of whole grain in their daily diets. Get a jump-start on the day’s nutrition by incorporating whole grain into your morning routine. For instance, when choosing cereal make sure whole grain is listed as the first ingredient. One easy choice is cereal with the white check, which have more whole grain than any other single ingredient.

Make Simple Swaps. Choose whole grain versions of the foods you love. Great options include whole wheat pasta and whole wheat bread or even whole grain crackers. Also, try different types of whole grain. Use brown rice instead of white rice as a side dish at dinner or popcorn, which is a whole grain, for a snack.

Don’t Judge a Food by Its Cover. The front of food packages provide good nutritional cues, but don’t forget to read the ingredients and check the nutrition label and side labels for additional health information. Cereals with the white check even include the amount of whole grain per serving on packaging.To help with choosing products with whole grain, General Mills developed “Fast Lane for Whole Grain,” an online educational game. Consumers can navigate virtual grocery store aisles and identify products that have whole grain as the first ingredient, with the option to enter a sweepstakes to win one of each of the 50 cereals with the white check.
Make a commitment to add more whole grain to your diet by simply pouring a bowl of cereal with the white check including Cheerios®, Lucky Charms®, Cinnamon Toast Crunch®, Honey Nut Cheerios® and Total®.

For more information on the importance of whole grain and a chance to enter the “Fast Lane for Whole Grain” sweepstakes, visit http://www.wholegrainnation.com/.
 
You also have a chance here to win the same prize package I recieved and begin introducing your family to yummy whole grains.  Disclosure: The prize pack, information, and giveaway have been provided by General Mills through MyBlogSpark.
 
what's in it:
5 Boxes of General Mills cereal with the white check
 
Now the good stuff.  Here is how you enter to win:
 
*Comment on my Blog by answering this question: With which of your favorite General Mills cereals with the white check will you kick start your morning this New Year?
 
You can earn more entries by spreading the word:
 
Follow my blog (comment below letting me know)- 1 entry
Post about this gieaway on Face Book (Comment Below Letting me know)-1 entry
Tweet about this giveaway  (Comment Below Letting me know)-1 entry each up to 5
 
No more entries will be accepted after midnight on February 7, 2012.  One person will be chosen using random.org...Good luck and Happy eating!!!

Thursday, January 19, 2012

Alphabet Soup

So I have been contemplating all week just how to put into words our latest visit to Stanford.  I have feelings of relief, irritation and a little wondering when it comes to the next steps.  Dr. Lee-Messer did another Neuro work up on Jasz, which I guess needs to happen at regular intervals throughout his life.  Everything is about like the last time we saw him, so no new news there.

Since our last visit, He went over Jasz' genetics testing.  He found the addition on chromosome 16 is associated generally with Autism and learning disabilities.  Okay, but Jasz isn't showing signs of either at this point.  The deletion on Chromosome 15 is a little more interesting in that the specific deletion isn't near anything, but further along on that chromosome there are the genes associated with Mitochondria.  Though those were intact, one of his theories is that the missing piece on Jasz' chromosome may be the switch that turns those genes on...so he may be missing the light switch. 

It had been a month since John and I had had our genetic test run, so we were surprised when he told us he had not received the results.  Well, they had received them, but no one had delivered them to the Dr.  Once he looked at those he discovered two interesting things.  John has the same addition of chromosome 16 and I also have a piece missing on chromosome 15, but not the same piece.  Interesting.  Makes you wonder what the combination of those mutations means...if anything.  Dr. Messer said it was all very interesting information, but not in the end that useful.  Listening, and later reading about the specific alterations in our genetic make-up had two effects.  I began to hear and after read them like a bowl of alphabet soup.  My brain was trying to make sense of these letters and numbers and there really is no sense to be made.  The second feeling I had is being vulnerable.  I know it may sound strange but, these people saw us to the core, they saw what we are made of.  It's like being stripped naked and then some.  Maybe others wouldn't feel that way but there was a part of me that did and still does.  Then being told it really didn't provide useful information after being told it was important we have this done, felt even more violating.  Don't get me wrong. Dr. Messer is a nice guy and I truly believe he was hoping for a magic answer out of that testing.  The effect is the same however.

Dr. Messer presented us with a neatly typed report from our first visit with him.  He outlined in detail for us his neurological and muscular findings of Jasz.  Then he laid out a step-by-step plan he wants to pursue....eventually.  You see, Jasz is doing AWESOME praise the Lord!!! In light of his forward progress and lack of regressions we are at a stand still with testing.  Eventually, some more blood work may need to be done, an MRI and a muscle biopsy.   But, until he goes backwards in progress those tests will not be as relevant.  Things won't really show up when he is doing well.  So we are in status quo mode and it feels good!!  We still will go back every 6 months for a neuro work up. 

The last thing he left us with was that he is referring us to another department at Stanford...the nuerogenetics department.  Apparently, they have specific expertise in Mitochondrial disease.  He wants to be sure that Jasz is on the right supplement and if he may need additional medications or different one's.  Since the Carnitine worked so well for Jasz it's not likely that will be changed, but they may add some CoEQ10.  You see he still has stamina problems and just plain gets tired fast.  So the Carnitine is helping with muscle strength but can do nothing for stamina.  Mitochondrial disease is a cellular disease and thus his cells need a little help regenerating energy.

We will trust in the Lord in this journey, we haven't been led astray yet.  I think at this point we have been given some breathing room and I'll take it!!