The Button

Mic-Key Low Proile Gastrostomy Feeding Tube.

Also known as the Feeding Tube.

Or known by our family the "button".

Diagram of what the button looks like.

Matthea was diagnosed with a genetic disorder called Cri-du-Chat at the age of 10 months. She was also tested positive for aspiration. Which means that she inhaled her food, literally. The food would not just go into her stomach, but also her lungs. So, the "button" was inserted and life changed for us. This was almost 6 years ago.

About a year ago we started feeding Matthea by mouth in small portions. And all was going well.

This has been the first winter that she has not had any lung infections or extremely high fevers. It's been wonderful!

About three weeks ago we were given the green light to stop using the button and let her eat and drink by mouth only. I was elated, yet nervous. Thoughts running through my head...

"This is the year of jubilee for our family!"

"We really are going to be "button-free" someday soon!"

Then....

"What if she aspirates and we end up in the hospital again with tubes running all over the place and machines screaming at us?"

"What if she loses weight? They are already concerned about her being too skinny."

"Can I do this?"

Well....

She's been doing great! (and so have I for the most part) Just this past week she gained 400grams.....so, we'll see. We meet with another doctor on March 22nd to show him the collected data (daily temperature, daily fluid intake, and weekly weight) and see what he thinks. My hope is that in 6 months we will be taking out the last button and be done with it.

There will be one big celebration the day that happens. We'll keep you posted, so you can celebrate with us!

Matthea with her soymilk, which she loves!

In the Spotlight

OK, this is for those who wanted more details about the TV interview.....

Looking in the mirror at a person I sort of recognize beneath the make-up and fake eyelashes, I begin to question how I ended up in this chair. The phone call from the producer. Our return phone call to say OK to a TV interview...a TV interview? The makeup artist sprays a mist on my face. I blink and remember that we are about to walk into a studio with cameras. I look in the mirror again and wonder if I look energetic and youthful or more like I feel most days, a tired old mom. I had told the makeup artist I wanted to look younger.....well, the TV monitor will let us know, eh?

Led into a dark room I begin to feel my heart racing and my feet dragging. Can we change our minds? Uwe grabs my hand and squeezes it.

"You have too much makeup on, but you will look beautiful on TV," Uwe tells me.

I laugh knowing that I look kind of questionable. I couldn't wait to show the kids to see what their reactions would be to all of this, especially the eyelashes.

We sat on a red couch. So glad I wore the black sweater instead of the red! It was warm with all the spotlights on us. We were given our microphones and got them hooked up. Nerves started racing again.

My eyelashes bothered me. What if one slips off and falls on my lap or sticks to my cheek while filming? You know the "I Love Lucy" episode or is it from "His, Mine, and Ours" where Lucille Ball's eyelash falls off and into a wineglass.....I can't remember, but that scene haunted me for most of the interview.

Three cameras were set up; two in front and one on the side.

Two monitors were visible for us to see ourselves....felt like I was watching a home video of myself and Uwe sitting on a red couch.

Weird.

We were told not to watch the monitors when filming started....now THAT was going to be easy to do, especially since they were facing us! HA!

The hostess sits down and introductions are made. We chat. We laugh. I’m at ease until the count down began…

Then 3-2-...it began.

The interview itself lasted 1.5 hours. I was so thankful to know that it wasn't live! I had hope that they would edit out any of my answers that sounded too lame. And, the last half hour I was understanding nothing...absolutely nothing. I'm not even sure if I understood my name, so I was so thankful they edited out the parts I would say, "Dui buqi, ting bu dong." (sorry, I didn't understand). Then she would graciously repeat in English for my tired brain.

But, it ended. My eyelashes didn't fall off; it was edited well, and I survived.

Things I learned from this...

1. It takes a lot of time and patience to get a TV interview together. (They also spent an entire day with us following us around).

2. Stripes are not good to wear on TV. (at least that was one of our rules)

3. I am not to make a career out of being in front of a camera, which I'm thankful for. =)

4. How to take off fake eyelashes. This one a friend had to call her SIL to find out for me. LOL

So, that is the story of my day in the spotlight. Give me a pen and paper or a computer any day. I'd much rather write about it and let everyone read "my story", then to stand in front of a crowd and take a bow.

Btw, my kids’ reactions to the temporary do:

Marcus was embarrassed that I came to school to pick him. Matthea didn’t really notice much, just happy I had returned. Megan loved the eyelashes; thought they were real and couldn’t figure out how I grew them and really confused when they “disappeared”.

Lost.....(part 3)

This time....I lost......my entire family.

Yes, I lost my entire family on a walk.

Just a simple walk to the plant market, right? Well, we were almost to Da An Park when Uwe and I both were craving some juice. So, we agreed that I would run down to Wellcome and get some. We'd meet on the corner.

I came back up with the juices and walked to the corner.
No family.

"Maybe he said the corner of the park"
Got to the park.
No family.
I waited and watched for about 5 minutes.
At this point I realized that neither one of us had our cellphones with us.

"Did he say he'd keep going and meet me at the corner of the plant market?"
I looked back to the original corner, no one.
I looked down one street, then the other....no tall foreigner with three kids.
I stepped into the park and began a fast paced walk towards the opposite end.
For those of you who have never been to Da An Park, it is very spacious with lots of green trees, grass, and on the weekends LOTS of people.

About 10 minutes later I was at the corner opposite of the plant market. I stood and watched about 30 people cross the street and enter the market.
"I know he did NOT take the kids in there," I said to myself, "But, where are they?"

At this point I just decided to go back home. I surely would find them there sometime this day. I kept my eyes open through the park again noting this time the soccer games going on and a family playing baseball. I noticed two foreigner gals laying on a blanket reading books. I saw so many people out relaxing and enjoying the sun.
But where was my family and why couldn't we be just like these people out enjoying the sun?

I got back to the corner of the park and began to cross the road to the "corner" I had thought I was suppose to meet them at.
And there he was.
My husband. Standing above the crowd scanning the roads searching.
For me.

As soon as the light changed I ran across.
Looks of confusion and relief filled faces, then we all began to talk at once.

What happened?
They were sitting outside Wellcome to my right. I came out and went left, not even seeing them. They, on the other hand, were playing and didn't see me come out of the store. Uwe was actually quite worried and getting ready to go to the police....it had been over 30 minutes at this point and they had checked the store various times and had even asked if a foreign lady had come in. The clerks had said "No".

Anyway, moral is take your cellphone with you no matter what. No matter even if you just plan to have a nice walk with your family.

Lost.....(part 2)

Two days left before we fly back to Taipei home from US.
My first flight with the three kids.....alone.
My fears were getting the best of me...
"What if we're not seated together?" (even though I had preselected)
"What if one of the kids is too annoying on the 13 hour flight?"
"What if I lose a bag?"
"What if I lose Matthea again?"
I was beginning to think I was crazy to even think this was possible.

But, the morning of the flight I was calm. It was definitely from the Lord, because it wasn't me.

With tears in our eyes we said our good-byes and went through security.
Slower, but no problems. In fact, they were quite pleasant and helpful!
Handed in our boarding passes and folded up the stroller.
Still Ok.
Airport personnel helped me get the kids on the plane.
"This is going to be smooth...what was I worrying about?" I thought to myself.

Landed at the first of two layovers. Kids carry their backpacks and we walk up the only aisle of the plane. Slower, but ok.
Just as we are about to exit the plane I hear, "Please don't kill the messenger of bad news."
Yep, here comes the problem of the trip.
"Ma'am, your stroller was left in Kansas City. But, it is on its way to Taipei via San Fransisco."
"Seriously," I ask, "I have a daughter who has special needs and can't walk well enough to get to all our gates." Plus, I'm thinking...my carry-on, my other two and their stuff....head starts spinning.
But, then I hear, "No problem, we have a wheelchair for you all."
Sigh of relief.

This "loss" turned out to be a huge blessing because with the wheelchair came a person to push. So, I had a free hand to hold Megan's through both of our layovers, through security checks, and through immigration. And, yes, even out to my awesome husband who somehow was able to get past part of security so he could be just that much closer to be my Knight!

The stroller was not at the airport when we arrived, but it was delivered to our apartment two days later with no damage.

But, two weeks later I lose more than the the first two....and learn that I should never go anywhere without the cellphone.

Lost.....(part 1)

Lost......child.
A parent's nightmare.

Hand dropped for split second.

A glance in the purse.

Then gone, she's disappeared.
Yes, truly a parent's nightmare.
My nightmare come true for a whole 3 minutes (which, by the way, feels like eternity).

This is the story of Matthea's disappearance at the Taipei airport.
We got there early, checked in, and still had time for breakfast at Burger King. We went through security, immigration, and got to the gate with no problems.....we had the stroller.

Time came to board. Kids got their bags, we got ours, I pushed Matthea; still no problem.
Ran the boarding passes through, got Matthea out of her stroller, folded it up and laid it by the others...problem began.
First, they scanned the wrong boarding ticket for Uwe.
Second, they noticed that he was not a US citizen and wanted the "Pre-approved" document. (Thankfully, he printed that out just before leaving the apartment)
Third, I dropped Matthea's hand and pulled out the documents.
Forth, she was gone.
No where to be seen.
Not behind us.
Not waddling down the long hallway towards the airplane.
Vanished.
Of course I ran down to the plane and saw people boarding, but she wasn't there. In my head I thought, "There is NO Way she could have gotten around them that fast. Plus the flight attendants would not have let a child board alone, especially a special needs child."
I ran back to the wide-eyed family and airport personnel looking at me expectantly.
I shook my head back and forth.
My head began to spin, heart began to race, stomach began to form knots. My non-verbal, mentally slower child was gone....how was she going to yell for help if she needed it?
Nightmare Reality!
My ever so calm husband asked if I looked on the plane.
I shook my head, turned and raced back down the hallway.
I stepped on the plane. My doubtful, yet hopeful, gaze racing down the only aisle searching.
Adults standing.
Adults lifting carry-on baggage.
No child.
Eyes dance back and forth at each row.
Adults in large cushion seats reading magazines.
Adults sipping on juice.
A flash of a child's red hair in the last row of cushion seats.
Sigh, I found her.
Sitting by the window with her backpack beside her, she smiled up at me; pointed out the window and signed "airplane".
Sigh, smile, relief.

We walked back up the long hallway and retrieved the rest of the family and together, all five of us, walked back on the plane to our seats.
Economy seats.

As the plane backed out from the gate, Uwe looked at me and said, "At least she has class sitting in business, huh?"
I smiled and shook my head in disbelief at what had just happened.


I have written part 1 because in the past two months I have experienced "lost" in my life. So, stay tuned for part 2 and what was lost on the return trip...

Humble Pie

Humility. Jesus lived it. Christians strive for it. Most fail at it.

This weekend was the lesson of humility for me. Huge error occurred. I have a great list of excuses, as I am queen of giving them.
"Too much going on this weekend."
"Juggling too many balls."
"My husband was gone for 2 days so he couldn't help."
etc.

But, bottom line....I messed up.
I put the wrong date on the invitation.
I did not double check.
Can anyone relate?

Deep sigh....and rewind to the beginning of Saturday when the lesson of humility began.

CPR class in the morning. All was good. Saved "Annie". Certification renewed.

Afternoon was spent baking a cake.
Matthea's Circus birthday party was going to be awesome with all her old classmates from last year. I was riding on the success and fun from last years party without a care in the world, except that a Boy Scout ceremony loomed in the late afternoon. So, not much time to do all the final touches.

3pm, the phone rings and guess what....guests for the party have arrived at the school. Frantic, Uwe and I looked at the invitation and sure enough....the date was the 12th, NOT the 13th.
What to do? What to do?
Boy Scouts starts in a an hour.
Cake is NOT iced.
No party favors.
Not Ready! No way to wing it, nothing to do but to suck up the pride and apologize.

Uwe bikes over there and talks with them. Apologizes profusely. We both feel like idiots at this point!
They CAN come back tomorrow. (whew!) But, they want to play with Matthea for awhile.
No problem, that can be done.
Uwe races back home.
I pack a mini bag with things needed for the Scout meeting (clothes for me, clothes for Matthea, diapers, etc.)
I race over with Matthea and see everyone.
Aplogies made over and over again as Matthea plays with her friends. I'm feeling a bit better, but at this point I've accepted the "idiot tag" I've put on and be grateful for their graciousness.

Half hour later, Uwe shows up with the other two kids and we take off for the Scout ceremony. I dress Matthea in the taxi. I dress at the place where the ceremony was held (wasn't THAT desperate!). Get the Scouts ready and sit down. 2 hours later leave the ceremony.
Kids fed.
Kids in bed.
Tears finally come....

Humility, being humbled sure doesn't feel good. But, I also learned that it isn't beating yourself up. It's accepting grace. Am I a humble person now? Probably not to the fullest. I am a continuing project for the Lord to work on. Praise Him that He won't give up.

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How did the party turn out on Sunday? It was wonderful and loads of fun. But, if you want to know more details, you'll have to wait until the next posting...as I've run outta time and probably space.

"Why I Don't Like PK"

OK, the title is a little misleading, as it isn't me that doesn't like preschool....it's my daughter Meg. The first week was a little rough for her, but it has gotten so much better. I thought I'd write down the reasons she doesn't like to go....and the mishaps that have happened on the way that probably didn't help matters.

Meg with Uwe in front of her classroom.

1. "I don't like it when you leave me Mama." (after Day 1)

2. "I don't like my teachers." (morning of Day 3 in the elevator) "Why?" I ask. "Because, because, hmm, because their hands are dirty." (this can't be true as the fear of H1N1 has caused all people to wash hands more)

3. Day 3&4: Meg smelled of wet pants. I found out that she wasn't wiping properly and threatened to send her in a diaper to school. Day 4 same thing, so when we told her that she was wearing a diaper the next day she screamed, "But there is NO toilet paper in the bathroom. It is on the outside and I have to walk out in front of everyone!" (Ahhh, light bulb comes on!) After getting her calmed down and convinced that she doesn't have to wear a diaper, I tell her the secret to Chinese bathrooms......get the toilet paper before entering the stall. (Ahh, another light bulb goes on!)

4. Morning of Day 7 she begins to like going. She stops crying and walks into her classroom all happy. Until Day 8.....I have to drop Marcus off at school this day. We take our bikes. I load my bike in the elevator with Matthea already strapped in. Meg walks in and stands behind me. Marcus gets his bike on. First floor...Marcus gets off; Meg can't, so I maneuver and get my bike out. Marcus holds the up button so the doors don't shut on Meg, only the doors shut anyway. I scramble to get the bike balanced and try to get the door to open, but too late. Door closes. Meg is gone. We hear screaming as the elevator travels down to the basement. A few minutes later it comes back up and a scared little girl runs out and grabs my leg. "Mama, you shut the door on me!" I tried to explain what happened, but it just didn't make sense to a 4 year old. But, she made it to school and went inside without crying....a miracle I do believe.

With all of this, she is still going without crying. The teachers say that she is trying to speak Chinese, which is a relief to my ears! My fears of the summer of having a kicking, screaming, clinging daughter for 2-3 months has vanished. She is totally ready for school and it is so exciting to see her have a love for it.
Thought you might like to see what my bike looks like with both girls on it. I LOVE it!