VALENTINE'S DAY 2014 - My Favorite One - so far

On February 14^th, my wife and I had plans to go out for dinner. Our two oldest children were at a church activity for a couple of hours and we had a friend at our house ready to watch Aria. It had only been one week since Aria’s brain surgery but she loves our friend and we thought it would be fine.

As we tried to leave, she starts begging us not to go. She’s clinging to us and didn’t want us to leave her. So, my wife came up with a brilliant idea of ordering some food and having Aria be our waitress and include her in our romantic evening.

I headed out to Pei Wei to pick up a couple dinners to bring back. While I was gone, my wife set up a small table with candles in the front room. When I came home, we sat down and Aria came to take our order and asked us what we wanted to drink. She brings our drinks and then takes our food order. Our friend helps her put food on the plates and she brings us our food. Every few minutes she would come in and ask us if we need anything more to drink or some more food.

She was so cute. It was great to be able to include her in our special evening. After we were done, she asked if we’d like to go to a private room to snuggle and kiss. She was coached by our friend but it was really sweet. She walked us upstairs to our room and then went back downstairs to be with our friend.

We didn't get to be alone too long because we had to go pick up the kids from church and then we all headed to the airport to pick up my sister, Tammy, who was coming into town to spend a week with us.

Overall, it was just a great and wonderful evening and definitely one to remember.

Love For Aria Hope - The YouTube Video

Our friend put this video together in honor of Aria. In this video you can see how adorable she is.

They also put together a medical expense fundraiser called Love for Aria Hope. 

THANK YOU to everyone who has shown your love through your prayers and financially!! THANK YOU!!

Four Surgeries in Past Five Months for Aria Hope

UPDATE - Feb.'14

In the past five months, Aria has had four surgeries.

In Oct. '13, she had a fundoplication.  I talk about it here. Future Surgeries

In Nov. '13, she had her 2nd chiari brain surgery but this time they cut the dura (the sac around the brain). It was at this time the doctor realized that she also suffered from hydrocephalus (too much water pressure on the brain).

In Dec. '13, she was back in the hospital because she was leaking spinal fluid through the incision that's in the back of her head. She was there a couple days to watch for infection. Later in the month she started developing lumps near her incision but we hoped it would go away.

In Jan. '14, Aria went through another Chiari brain surgery to fix the spinal fluid leak in the back of her head and she spent two weeks in the hospital with a temporary shunt in the small of her back hoping to allow the brain to adjust to the hydrocephalus. We chose this option because the other option was to put a permanent one in her head.

Feb. '14 saw us back in the hospital because she had developed lumps in back of head again and within two days of telling the doctor they put her back in the hospital and put the shunt in her head, making this her fourth brain surgery. The good news is that they didn't have to open up the back of her head again and in three months they'll check to see if the shunt can be removed. We didn't know this was an option when we first heard about shunts but we're glad that if her body can heal and deal with her hydrocephalus it can be removed.

A friend started a medical fundraiser for us to help us with our hospital expenses called Love for Aria Hope. The video of Aria that our friend put together was very sweet. It brought tears to my eyes.

We're also very thankful to those who blessed us financially during this major event in our lives.

We're even more thankful for your prayers for Aria's healing. Please keep praying for her.

ARIA - "Fearfully and Wonderfully Made"

How many people do you know that have five or six rare health issues? Until my daughter, I didn’t know any. That’s what my daughter, Aria, has to deal with but if she was to walk into the room, you’d never know anything was wrong with her.

I was thinking, “How could so many things be wrong with her?” I have to realize that God made her that way.

In Psalm 139 it says,

13 For you formed my inward parts;
    you knitted me together in my mother's womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
    my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.

I know that’s a strange thing and it’s easy to think that when you’re “healthy, wealthy, and wise” but what about a little girl like Aria.

Looking at just a small part of Aria’s medical history, you’d wonder how I could think that she’s “fearfully and wonderfully made” but here is why I believe it’s true.

1. God has made an incredible girl who has allowed her body to deal with her health issues as we try to resolve them as best we can.
2. Aria has an incredibly high pain tolerance and is able to handle things that most children could not.
3. Aria has such a sweet spirit about her and is just a blessing to all those she meets.
4. God has given her such patience and grace to accept her life the way it is with very, very little complaining.
5. Although God has made her beautiful on the outside, more important, she’s beautiful on the inside. That’s what’s important and that’s what comes through her daily life as she lives, a much a possible, a “normal,” spunky, happy, and satisfied life.
6. God has a special plan for her life. Through her, God will bless others and God will be glorified.

Aria is a little girl who has been “fearfully and wonderfully made."

MOM

It's not Mother's Day but I've been thinking about my mom quite a bit last week. When I think of my mom, I think of Sue, my second mom. I don't think of her as my step-mom. She's not the one who gave birth to me but she's the one that raised me.

My mom would have been 72 on Dec. 3rd. She used to make the statement that it took four days for the results of her birth to reach Pearl Harbor. It's also the way I remember when she was born.

I was watching a silly sitcom and there was some friction between the grandma and the step-mom over who deserved the "mom" necklace made out of macaroni by the three year old girl. The grandma who helped raise her the first couple years or the step-mom who had married the father. As most sitcoms do, it all worked out well and they were with all the people who cared about each other and that made them a family.

Earlier that night, before we watched that sitcom, our family was setting up the Christmas tree. The kids started singing and my wife sang a little and I remember thinking that my mom would have loved singing Christmas songs with my kids.

Can I be honest and tell you that I'm upset that my mom's not here to see her grandkids and that my kids don't get to know their grandma? She's been gone over 18 years now. I missed her when I was single but I miss her even more now that I have kids.

I am comforted by the fact that I'll see her again in heaven. I know that here on earth her life was miserable and that she's happy now. There's still a part of me that wishes she could be here to celebrate Christmas with her son (the one she raised as if she'd given birth to him) and his family.

Moms are special and I'm glad my kids get to enjoy the holidays with their mom.

CHALLENGES

#1 My Daughter’s Surgery this Week

This week my youngest is going in for her second brain surgery to address her Chiari Malformation. She had this done back in June of 2012. She’s really strong and did really well the last time and so I’m praying that it goes really well this time also.

I know we're very anxious about it but I told my wife last night that God loves Aria more than we do. I know that He has her in His hands and He will take care of her. I have faith in my heavenly Father.

#2 Our Children’s Behavior

It’s not easy to go through and I know it really wears on our family. My wife says that she can tell that it’s bothering the kids. When she drops off the kids for school, Aria does not want to go unless mommy promises to come to school early in the afternoon to be with her in the classroom. I’m very thankful that Tina is able to do that, although I know that puts a strain on Tina to get the things done she wants to do for the day.

Suzanna and Haydn have been acting up a little more than normal. Tina thinks it’s because they’re bothered by all that’s going on with Aria. She’s probably correct but it could also be their way of attracting attention since Aria gets the most due to all her medical treatments and we cater to Aria because of how much she goes through on a daily basis.

Have you ever been at a loss on how to correct your children’s behavior?

Have you ever felt like a failure because your child just can’t seem to control him/herself?

Do you ever worry that you, as a parent, must be doing something wrong when your kids just can’t seem to listen?

Probably not and it’s just me but that is some of the challenges that I face when it comes to our kids’ behavior.

#3 Finances

Bills are always a stress and if it’s not one thing, it’s another. Medical bills come in the mail on a regular basis. Our car was hit a couple weeks ago and we had to come up with the $500 deductible plus 20% of the cost of a week’s rental on a car. I had to replace all four tires on my car about two months ago.

BUT, God is good!!

1. I have a job that pays most of the bills.
2. Tina works some and does what she can to bring in some money.
3. Tina is awesome at saving money and finding that bargain. For example, this week on three different occasions she’s saved between 65 and 85% at the grocery store.
4. Our kids have more than enough to eat and clothes to wear.
5. We live in a nice house that God allowed us to refinance last year that lowered our mortgage.

I’m sure I could go on but I’ll stop at that for now.

#4 Faith

Do you ever wonder why God allows bad things to happen to people, especially people who believe and put their trust in Him?

I know people who are struggling with or deny that there is a God because it can be hard to believe in a good, loving God when all you see is bad things happening all around.

It's especially hard when bad things happen to yourself and/or your family. We've all wondered how God could allow such a thing to happen. Doesn't God love us? Couldn't have God stopped it?

Faith can be a challenge but I believe Roman 8:28 when it says, "And we know that for those who love God all things work together for good, for those who are called according to his purpose."


Challenges are a part of life. The challenges that come into our lives should help remind us to focus on Him. That's not always easy because we like to focus on ourselves.

Let's remember what James 1:2-5 says, "Count it all joy, my brothers, when you meet trials of various kinds,
for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him."

Aria - Denver outcome & future surgeries

It’s been quite a couple months. In August, Tina took Aria to Jewish National Hospital in Denver. After lots of tests and meeting with doctors and several procedures, Aria was diagnosed with asthma, gastroesophageal reflux disease, equivocal laryngeal cleft type 1, and chronic rhinitis.

Rhinitis is a medical term for irritation and inflammation of the mucous membrane inside the nose.

Gastroesophageal reflux disease (GERD), gastro-oesophageal reflux disease (GORD), gastric reflux disease, or acid reflux disease is a chronic symptom of mucosal damage caused by stomach acid coming up from the stomach into the esophagus.

A laryngeal cleft or laryngotracheoesophageal cleft is a rare congenital abnormality in the posterior laryngo-tracheal wall. It occurs in approximately 1 in 10,000 to 20,000 births. It means there is a gap between the oesophagus and trachea, which allows food or fluid to pass into the airway.

The first two we knew about but the cleft was a surprise and might be causing some of the fat in her lungs but we’re doing the stomach surgery first and monitor her condition afterwards and if necessary they’ll fix the cleft but it’s high enough that it might not be an issue. We’ll see.

On Oct 8th, Aria will be having a fundoplication, where the gastric fundus (upper part) of the stomach is wrapped, or plicated, around the lower end of the esophagus and stitched in place, reinforcing the closing function of the lower esophageal sphincter.

Whenever the stomach contracts, it also closes off the esophagus instead of squeezing stomach acids into it. This prevents the reflux of gastric acid (in GERD).

We also had another CT scan recently and it’s showing that Aria’s Chiari is affecting her again with little fluid flow between her spine and her brain which is causing more and more headaches and could lead to other problems also.

We are planning on her having another brain surgery before the end of the year to help release the pressure again. We thought it was a “one and done” thing but the new doctor says that he’s been known to do four or five on children as they continue to grow through childhood. I hope it’s not that many and we’ll let you know when her brain surgery is going to happen but my guess would be around Thanksgiving or Christmas break to try and minimize how much school she misses. She’s already missed a lot so far.