Tuesday, February 27, 2007

Standard Baby Faces

Here is a montage of baby faces that every parent is familiar with: frustration, obstinence, curiosity, and piety.

The Face

I know this is blurry but Matthew has started making this "snarky" little face that just cracks us up. We are having difficulty capturing it because he is a little "Flash Gordon" and indoor shutter speeds are no match for him!

If it's not one child...

If it's not Matthew dumping coffee on the floor, then it's Quixa ripping out the stuffing from her chew toy.

Sunday, February 25, 2007

Baclofen seems to be working!

Here's an update until Mike can post some new pictures of our little soldier boy...

We went to see our new GI specialist on Thursday ... Dr. Baron said all biopsies looked fine.

The retching remains a mystery, but it does have something to do with how his tummy adjusts to volume. Doc put him on Baclofen, he gets 1cc three times a day...
and so far....

NO MORE RETCHING! Well.. he had one tiny retch which was nothing compared to the usual turning purple with eyes bugging out.

Since this drug is a muscle relaxer... we have noticed him being a bit wobbly when he walks ... we'll keep an eye on this and report to the doctor next week.... loses his balance very easy now.

He seems a little on the "testier" side :-/ ... but we'll see ...

We're thrilled that he's not retching ... but hoping the side effects won't last.

We GOSH DARN wish our previous GI specialist would have listened to us 8 months ago when we first suggested Baclofen (after friends of ours started their cardiac child on the same meds for a retching problem)!!!!!

OHHH and yes .....

Matthew has a brand new specialist to add to his huge doctor list...oh boy ...
you all must know how much we love spending our days in the doctor offices.

That will be a pediatric dermatologist .... Dr. Doug Thomas....
Matthew's had a weird rash on his arms and legs only..... for over a year now ... we've tried three different topical meds (one being a $265. can of foam) .... nothing seems to be helping.

We couldn't get in for five weeks .... so we'll know what's up with his skin at the very end of March.

Tuesday, February 20, 2007

Early morning pre-op

Yesterday we arrived at the hospital for Matthew's endoscopy at 6:30am. We met with the doctors, got Matthew dressed in his undignified pink gown, and then checked his vitals before he went into the operating room.


Matthew was in-and-out of the operating room in 30 minutes. Thankfully, there was very little pain involved with this procedure so he awoke quite peacfully by comparison.

Have you ever been this tired?

They say, "Play is the work of a child." Well Matthew is no slouch! While Terri and I were excercising in the back yard last week, Matthew was playing hard. In fact, he plum wore himself out. I think I looked like this behind the wheel a time or two when I worked graveyard.

Monday, February 19, 2007

Endoscopy update

All went well today... in fact it couldn't have gone better. Matthew was a champ as always.
Mike will be posting pictures tomorrow. We took quite a few.

Dr. Baron was able to take a few pictures of his esophagus, inside his tummy,
the beginning of his intestines and the fundoplication. He said all looked normal.. except, the bottom of his esophagus is inflamed a bit. He took four biopsies of different areas and we will get the results when we go to our appointment this Thursday. After we find the results, it sounds like we'll be putting Matthew on a drug called Baclofen... apparently it helps w/ spasms. I know another family in LV of a cardiac baby that used to retch ~ he was put on Baclafen and quit retching.
Our previous specialist wasn't interested in trying Baclofen.. I guess it's fairly new to the "world of retching kiddo's" ... this drug is typically used for kids that have spasms related to cerebal palsy. Don't worry.. Matthew does not have cerebal palsy.

We are anxious to try it and see what happens. Our friends swear by it.

So far, his retching remains a mystery!

Endoscopy today

We're getting ourselves together now to have Matthew at Sunrise Hospital by 6:30 am for his 8:00 am procedure. We are thinking we'll be home by noon.

Mike intended to put up some cute pics of Magoo yesterday, but life got in the way :-)

Please keep Matthew in your prayers today. He will be put under during the procedure, so it should be painless.
We never like being in a hospital during RSV season.. we are hoping to keep him healthy!
So far, been very healthy this winter... WOOT!

I sure hope this will be the LAST test for a while and we find out what is causing this retching ... and of course, we hope whatever they find will be a relatively easy fix.

Thank you! Mike & Terri

Oh.. the Mannings have posted the cutest pictures of Mason and the family over on their blog... link below.

Friday, February 16, 2007

Quick Baby Surgery Update

Josh called us this morning and so far ... everything is going great w/ Lincoln's heart transplant. They are thrilled and for the first time in his life they saw 100% oxygen saturation levels. He's doing very well ~ but, the next couple days are critical. They are forever grateful to he donor family and are keeping them in their thoughts and prayers. What an amazing family the donor family is. They have given the ultimate gift of life.

Lisa called this morning and this afternoon to give me updates on Mason. The surgery went well and Mason is doing good. His chest will remain open for a day or so until the swelling goes down. The next 24 hours are also critical. It is always a stressful time for us parents when they close the chest back up. Matthew's chest remained open for four days and he experienced a bit of difficutly, but then again... Matthew's lungs were so badly damaged.

I will allow you to go the their blogs for further updates. The links are below.

Thank you so much for all your concern and prayers. That is all we "heart parents" can ask for!!

The Carter's and Manning's are humbled by all the well wishes!

Matthew's test results

Dr. Baron, Matthew's GI specialist called yesterday afternoon... his gastric
emptying study was normal. YAY!

We will be going Monday morning to the hospital for an endoscopy ~ they will
put him "under" for that. Thank God they will put him to sleep BEFORE the
IV is placed. Whew, that's a relief for me ~ I stress about that.

Today is such a big day for our dear friends w/ cardiac babies. Lincoln just
had a heart transplant last night... came out at 3:30 am this morning... Mason
went in first thing this morning for his heart repair. I have posted about both
of them below. Links are provided.

I will be busy praying for these little guys. Thank you for
your prayers.

Mason Manning in surgery NOW

I just spoke w/ Lisa ... they took little Mason back for his surgery!! They moved him up to first surgery instead of second surgery!! YAY! Please keep this family in your prayers ~ it will be a long day for everyone... surgery is scheduled to be approx 7 hours. God bless Dr. Hanley and his team and baby Mason. www.littlebabymanning.blogspot.com

Thursday, February 15, 2007

Lincoln Carter getting a heart transplant tonight!

This is the Post written in little Lincoln's blog by his daddy, Josh:
Lincoln Got A Heart!
We are so excited to share that we got a call at 8:30 this morning that there was a heart offer for Lincoln. Unlike the previous offers...this one is perfect for Lincoln. We don't know much about the donor nor can we get into the details...all we know is that it is a great match! Our hearts are filled with joy and excitement for Lincoln yet our hearts break for the family who lost their child to make this possible. Lincoln is scheduled to go into the OR around 8:30 PM. The surgery will last most of the night and into the morning. We are very very nervous! Please be praying for the surgery and that God orchestrates the whole event beautifully tonight as He has been doing from the start. Also be in prayer for the donor family! We will let you know how things go as soon as things settle down tomorrow! Thank you all so much for everything....We love you all and will talk to you soon. Pray! Pray! Pray!

Wednesday, February 14, 2007

Endoscopy scheduled

Funny, the billing department of the hospital called us today
to confirm all of our insurance information for Matthew's
Monday, February 19th Endoscopy.

We didn't even know that one was scheduled. :-/

I'll be calling Dr. Baron tomorrow to find out the results
of Matthew's gastric emptying test.
I am hoping to find out the time of his procedure Monday.

Happy Valentines Day

We wanted to send Happy Valentine Wishes to everyone...
and we're sending
BIG HEART (((hugs))) your way.
Mike, Terri, Matthew, Quixa, Petie Cat, Sunnie Bird and Aimie Bird
oh, and Happy CHD Awareness Day, too.

Tuesday, February 13, 2007

Matthew's Gastric Emptying Study

Matthew was a real trooper today. They gave him some mildly radioactive fluid and then took images of his digestive tract every ten minutes for an hour. We will get the results Thursday. Terri & I were relieved that the contrasting fluid went in through his g-tube and not down a tube in his nose. Based on the results of this test Matthew will likely need another test of his esophagus. As you can see by the look on his face, he was quite apprehensive about being in another medical office. At first he sounded his displeasure. Then, as it has done so many times, his mood turned to quiet acceptance of the way life can be.

Monday, February 12, 2007

Another test tomorrow

We'll be taking Matthew to a diagnostic center at 7:30 am for a "gastric emptying study" ~ we are still trying to find out what is causing his retching. The upper GI he had a couple weeks ago didn't show anything was wrong w/ his stomach ... and the fundo hadn't slipped. We were happy about that! They were unable to do an "esophagram" because he doesn't take anything by mouth. That was too bad, we were all very curious what that might have showed.

The test after this will be an "endoscopy" where they take a peek down his throat, they will put him "out" for that.

Sunday, February 11, 2007

The Las Vegas Coffee Party!

Matthew has been fascinated with my coffee cup for almost a year now. He thinks the "spill-proof" lid discriminates against little-bitty fingers however. In the past, he has likened it to "taxation without representation". As you can tell by this photo, Matthew has reached a new milestone in his dexterity. In a scene reminiscent of the Boston Tea Party, Matthew managed to open the lid of my cup and pour the contents all over the floor in his room. Then he spread the coffee all over the house by walking through the puddle.

He's in the Jail House now...

After removing his coffee soaked clothing, I put Matthew in his playpen while I cleaned up the mess.


Matthew & Quixa are inseparable. Often times Quixa is just trying to get away from those little ear-grabbing hands but they still play well together.

Pious or Ghostly?

What do you think? Does Matthew look more like an angel or a ghost?

A Head Above the Rest

Raising Matthew over my head is a surefire way of making him smile. In this montage, Terri snapped a picture every time I launched him up in the air.

Saturday, February 10, 2007

A special week to recognize people born with heart defects, to remember loved ones who lost their battle to CHD, and to honor the dedicated health professionals who work with us.

More than 40,000 babies are born each year in the United States w/ a Congenital Heart Defect.

Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.

Despite the fact that CHD affects millions of families, a relatively small amount of funding is currently available for parent/patient educational services, research, and support.

Two little guys that we know, are in the hospital now.

Lincoln Carter ~ he's been in hospital going on 8 months, his entire life ... waiting for a heart transplant at UCLA. Josh & Kristin are away from their home.

Mason Manning ~ born this past Tuesday... having open heart surgery this coming week up at Stanford. Justin & Lisa are away from their home.

Friday, February 09, 2007

Matthew's portrait

This is for the newcomers to Matthew's blog.
A brief story of Matthew's life with some pretty sweet pictures of him.

Click on the link below.

Tuesday, February 06, 2007

Baby Mason Manning is born on Feb. 7th

We have special friends here in Las Vegas named Justin and Lisa. Lisa was 20 weeks pregnant when she found that the baby boy she carried had a heart defect. He has Tetralogy of Fallot,
pulmonary stenosis and disontinuous pulmonary left branch. They are currently at Lucille Packard Children's Hospital at Stanford. World famous, Dr. Frank Hanley will be perfoming the open heart surgery... hopefully next week sometime. They were blessed w/ room availability at Ronald McDonald House.

They are an absolutely adorable couple with a 15 month old boy.

As Mike and I know all too well, it is SO very hard to be away from home during such a stressful and emotional time!! We would like to ask everyone to keep Justin, Lisa and the baby in their prayers.

Here is the link to their blog if you'd like to send well wishes or follow the progress of the new baby, Mason. He was born on the first day of CHD Awareness Week.

Thank you!

Monday, February 05, 2007

Just in case you Wondered...

Terri is our neighborhood "Mrs. Kravitz" and her curiosity extends into cyberspace. She was nosing her way through the site meter we installed on Matthew's Blog and found some very interesting stats on how some people find the blog. For instance, here are some of the subjects that were searched on Google and ultimately lead people to our blog:

1. MAPCA’s
3. G-tube
4. Cardiothoracic Surgery
5. Belgian Malanois (Quixa’s breed)
6. Kevin Odor (Our Pastor (see March ’06))
7. Johnny Hazelwood (my buddy from high school)
8. Cradle Cap
9. Weening off BiPap

Some of these searches are obviously medical in nature. Others are much more obscure.

Sunday, February 04, 2007

Home Improvement

Matthew couldn't wait to help me hang Amy's new birdie-perch. We took a severe detour when the tape measure came out.

The Carnivor

Hey son, don't eat the zebra!

The Daredevil

Never satisfied to simply sit in his rocking chair, Matthew insists on standing up and, as a result, taking precious years off the life of my heart & nerves.

The Button Pusher

Matthew loves all things electronic. Show him a button and he has to push it. If Terri & I wish to get through a TV show, we are forced to pile up some obstructions around the entertainment center first.