We have a new DOG in the house

For those of you that know our family well, you read the title of this post and said,

"WHAT?!?!?! How in the world did you convince Paul to get a dog?"

Because you see, I've been trying to convince Paul to get a dog for a couple of years now.  Ever since our sweet Zoey passed away.  And the answer is always a resounding, NO!!  

But when I called Paul the other night from the pet store and asked him if I could bring this little guy home to our family, I wasn't met with too much opposition.

That's probably because

DOG

IS

A

FISH!

Yep, that's right.  We got a fish.  And Alexa named him "Dog".   It's quite confusing really and I think we are going to start calling him "Doug" instead.  But if Alexa would've named him "Doug" to start with this blog post wouldn't have been as much fun.  

In case you were wondering, fish are not nearly as good of pets as dogs are.  So....I will keep trying to convince Paul to get a dog - the furry kind that bark.   

Being paid with smiles

The other day, I was getting frustrated because of all the unanswered questions relating to Parker and my desperate need to figure it all out and make the best decisions for my little boy.  Sometimes I unload all of this on Paul and I constantly ask him questions in which I know he doesn't have the answer.  On this particular day, Paul just looked at me and said, "He didn't come with a manual, you know."  I just giggled.

It's nice to be reminded that NO child comes with a manual.  No parent knows what the future holds for their child or what impact the decisions they make now will have in the future.  Parents try very hard to do their best with the knowledge and tools they have.  They want the best for their kids, for them to have a good quality of life and to be happy.  My desires for Parker are no different and I am just trying to do the best I can for him.  It doesn't matter that he has a unique diagnosis or could have a book written about his medical issues, my wishes for him are THE SAME.

So...if you are one of the Doctors, nurses, medical professionals, durable medical equipment people, therapists, insurance company representatives or pharmacists that I deal with on a regular basis, that is why I am the way I am.   I don't have a manual, I'm doing the best I can and I want the best for my kid.  I don't think I am being over-protective, purposefully annoying, or expecting too much.  All I ask is that you return my calls, follow through on what you say you are going to do, don't assume anything and treat Parker and our family like people instead of a case number.  I'm just advocating for my child because he can't do it for himself and please realize that you would do the exact same thing if you were in my shoes.

Whew!  Now that I got that off my chest, here's a recent picture of me and my little man.  Paul says Parker pays us with his smiles and with smiles like these, I think I'm being over paid.

You'd never know it by looking at his big smile, but Parker currently has a very nasty bug.  Even though I haven't taken Parker anywhere...I repeat, anywhere...except for the Doctor he has managed to get a pretty big-time infection.  We noticed it first around his g-button and when we got the results back from that culture I looked it up and began to wonder if he had that same bug in his lungs because he fit the criteria.  I've been trying to explain to the Doctor's for over a month now that I think something is going on because of the frequent suctioning that needs to be done.  So....last week I called the Dr. and asked if we could do a culture of his trach secretions and they agreed.  Sure enough, it came back with the same bug and they have prescribed some pretty powerful drugs to get rid of the thing.  The trick is (once again) to get the insurance company to agree to pay for the medications.   **Side note:  It sure would be nice if parents with medically fragile children didn't have to fight so hard to get their kids the care and treatment that is necessary.  And if it all could be billed correctly the first time, that would be nice too!**

For all you people who live more in a "trusting mode" than I do, I would appreciate prayers for Parker to get over this thing sooner than later, for him to get the care and treatments that he needs and that will benefit him, for me not to get so frustrated with some of the service providers and for me not to get so caught up with all of this craziness and remember to enjoy the everyday special moments with Parker, Alexa, and our whole family.  Thank you.

Alexa's first on-line tutorial

Start with some butter,

add some sugar,

crack an egg,

mix it up,

 add more stuff until a dough forms,

flour your work area,

roll out the dough,

find the strength to roll some more,

cut out some cookie shapes,

make your own cookie creation with the dough.

take a break for a day then come back to frost the cookies,

add sprinkles (and put some frosting on your face for good measure),

and most importantly, don't let anyone tell you you can't make Christmas cookies with Easter-colored frosting in March!!

SEVEN

Seven years ago, Paul and I were jumping off this

burying ourselves in this

hiking to this

 

snorkeling with these

and watching these.

But most importantly, SEVEN years ago today, Paul and I were getting married on the beautiful island of Hawaii. 

When I think back to that day, it seems like a lifetime ago.  So much has changed and we've grown up so much.  The one thing that remains the same is that I was lucky enough to marry my best friend who I look forward to spending each moment with.  I can't imagine life without him.  I can honestly say I love him more now than ever!  Ok, enough of the mushy gushy....  

In Seven Years we've owned ONE pet, been blessed with TWO beautiful children, visited THREE other countries, attended FOUR churches, exercised FIVE times, had SIX different vehicles and moved SEVEN times. 


I wonder what seven more years will bring?  

Random Thoughts

Potty training is for the birds.  I really dislike it.  I'm positive I'm doing it wrong and afraid I'm going to scar my dear, sweet child for life.  We had started this process right after Alexa turned two but had only been going at it for a couple of days before Parker was hospitalized.  She was actually doing fairly well and had gone pee pee AND poo poo on the potty.  She wasn't thrilled with the whole thing but she did get the concept.  I don't think the grandparents tried it while we were away and she didn't seem interested in starting back up when we got home.  I figured this was OK because I've been told not to potty train during times of stress or when you can't focus enough time at the task at hand.  So...we've held up for a few months.  But, I figured it was time to press forward again and I think I should've waited....until she was at least SEVEN!

It took me about three days just to convince my child to sit on the potty.  She didn't want anything to do with it.  Since she showed no interest in the little potty, I thought maybe a toilet seat for the big potty would be a better option.  I took her to Wal-Mart so she could pick out which one she wanted.  For the first time ever, she did NOT want to take something off of the shelf and put it in the cart.  When I asked her to pick one out, she just said "NO" or "Put back".  My child is adamant that she is NOT going to try this thing.

I have purchased just about every little "potty reward" that I can think of to no avail.  Even though she will now sit on the potty, as soon as she needs to GO she wants to get up and says, "Put diaper on."  HELP!  Anyone know how to get such a strong-willed child through this?  Or, any tricks to help Mommy not lose her mind through this?

I'm taking a sign language class that is offered at our church on Wednesday nights.  I really do enjoy it but I have been bad.  I am not studying/practicing enough.  I've slid under the radar until now.  Last night, a gal who is deaf came to our class and she went around the room asking us questions.  No voices were allowed.  I was able to communicate what I wanted with her but I was pretty lost trying to understand what she was telling me.  How embarrassing!  I should be doing better.  This is not typical for me.  I was always the girl who studied and did well in school.  I got A's and I wouldn't accept anything else.   Maybe I'll have to ask to be graded and that would encourage me to try harder?

My little man is so happy lately.  He's all smiles and loves being held and cuddled. This, of course, makes me happy too. Now that Parker has been diagnosed with hearing and vision deficits, he is able to receive additional services and resources.  There is a vision/hearing specialist from the schools coming out to provide us with ideas on how to assess what Parker can see and how to present things to him appropriately.  It's a bit tricky because Parker can only see things that are above his head and back a bit.  He's not able to see straight out in front of him or below him.  He's also only able to see certain things and certain colors and we're working on figuring out what all that includes at this point.  We know he can see mylar balloons because they are big, colorful, and shiny so I think we'll be getting a different colored balloon every week to see which colors he responds to best.  Hopefully our house won't fly away with all the helium inside.

Parker has been doing better with his therapy.  He has more head control now and can roll from side to side at times.  He uses his legs a lot for his movement and positioning and we're trying to encourage him to use his arms.  In the last few days, when he has a rattle or small toy in his hand, he has figured out that he can work his little arms up to the top of his head so he can look at it.  This is the cutest thing and I'm so proud of him for figuring this out!  Go Parker!

Other than that, I'm tired.  Really tired.  I think I could curl up and sleep for three days...easy.  I know Paul feels that way too.  People think being a stay at home Mom is easy but it isn't.  It's hard work, much harder than when I was working full-time.  You can't really explain it - you just have to experience it yourself to understand.  I get frustrated because I don't seem to get anything accomplished during the day.  It's hard when I have to suction Parker 7-10 times per hour.  It's been like this for over a month now but none of the Doctor's seem concerned.  They just say, "It's no big deal - kids with trach's do this sometimes."  I wonder if they've ever suctioned someone that often for a month? 

That's enough rambling for now.  Until next time....toodles!

Then & Now

THEN

Paul with his sisters, Taryne and Serina.
 Oh my goodness, could they be any cuter?

NOW

THEN

My little brother, John, and me

NOW

From Surviving to Trusting

As a young child, I had an Old Maid card game.  On one of the cards was a banker with a big smile on his face and stacks of money in the background. There was no question what I wanted to be when I grew up - a banker.  A little later on, when I found out that the tooth fairy gives you money in exchange for your teeth, I would sit and wiggle and pry at my teeth until I loosened them just so I could cash in.  When I was given $5.00 for a birthday gift from the grandparents, I wouldn't spend it.  I would put it in the bank (I had my own bank account at a pretty young age).   And....at Halloween time, I wouldn't eat all my candy.  I would save it.

I realize....I had issues.

It didn't stop in childhood.   When I got to high school, I thought it was more important to work as much as possible than join school related activities because I was hoping I could save enough to pay for college.  Too bad I didn't know that 10 years later I would still be paying student loans.

As an adult, I didn't become a banker but looking back I don't know why I didn't go into finance.  I like to crunch numbers, I like making a budget, I like saving up to buy things and I always pay my bills on time.  I like to feel in control of my money. 

When Parker came along and we started seeing medical bills that totaled more than everything we own combined (including our house), I freaked out.  I won't go into specifics on how much Parker's bills have totaled but let's just say it's A LOT.

We do have health insurance through Paul's job but we go over our YEARLY cap for medical equipment in less than one month so needless to say I was worried.  I fretted and stressed out and wondered what in the world we were going to do.  I remember thinking, "How are we going to survive this?"

I was reminded of this yesterday at my MOPS group when we had a speaker talk to us about the 4 modes we can live in:

1) Pleasing mode (always trying to please everyone around you)
2) Striving mode (always trying to strive for and accomplish things)
3) Survival mode (just trying to make it through the next moment or day or week or whatever)
4) Trusting mode (living your life fully trusting God and letting him take control)

Well, it took me no time at all to admit that I am in full survival mode.  I don't plan ahead if I can help it, I just focus on getting through each day and each week.  Thinking about several months down the road is hard for me right now.  I'm trying to maintain control and I am NOT doing a good job of putting my trust over to God and remembering that he really is enough.  He has a plan and through him I will get through this. 

Knowing this and acting upon this are two different things.  I don't know why it's so hard just to let go and say, "God I can't do this on my own anymore.  I need your help."  But it is.

Looking back, I wish I would've been able to switch modes regarding the financial concerns I had with Parker's medical bills.  I was in survival mode but needed to be in trusting mode.  God has always provided for us and this instance would be no different.

Due to all of Parker's health issues, he needs what they call "skilled care".  Kids with high medical needs like Parker used to have to be cared for in nursing facilities or hospital settings because home based care wasn't as widely available.  Fortunately, now there are programs available that allow children like Parker to remain in their homes with appropriate services in place because it's better for the child and family and much cheaper for everyone.  The program that was the answer for us was Katie Beckett.  This program is what makes it possible for Parker to remain at home and us not to drown in medical bills.  It covers the nursing services we receive and picks up the leftover costs after our primary insurance.  Luckily, when Parker was found eligible for the Katie Beckett program, they went back to November 1st to make it active.  You know what that means?  All of the big bills that Parker had were covered. 

GOD IS GOOD!

I'm so glad that people who live more under the "trusting mode" were praying for us and praying for our financial worries to be taken care of.  Thank you!

We do, of course, still have expenses related to Parker's medical care but they are so small in comparison to what they could have been.  I do know there will come a time when he will no longer qualify for Katie Beckett.  I know the healthcare system is in trouble and I know programs like Medicaid/Medicare etc. are in jeopardy.

So, I will continue to save for those times.  That's just how I'm hard-wired.  But, I won't go as crazy as I have in the past. I will try to better trust in God and know that he is enough. He will get us through.  And even if we fall on hard times, some good will come of it - it always does.  I will strive to live in a more trusting mode.