SAL-VA-TION: by grace

E-LEV-EN: children from 1984 to 2006

HOME-SCHOOL-ING: since 1990

DOWN-SYN-DROME: susie and gabe

GRAND-CHILD-REN: since 2010

FAITH-FUL-NESS: my steadfast rock, my biggest supporter, my leader, my friend, my love, my husband

Friday, July 31, 2009

I love my CNP!

I recently went in for my annual physical (with my Certified Nurse Practitioner) and was surprised to learn that my cholesterol is TOO LOW. I didn't know that was possible. Janet advised me to make several changes to my diet and exercise routine to help with the problem. First of all, maybe I need to make the exercise "routine" before I think about making changes to what isn't.

Anyway, this is my favorite suggestion/mandate, and boy have I been diligent in keeping up with it!
PS I haven't gotten to the exercise part yet, so if my cholesterol isn't going up at least my weight is.
PPS Unfortunately my insurance doesn't cover this prescription, it's all out of pocket.

Thursday, July 30, 2009

Brain Bytes

Even though I've seen over and over that Gabe has his own way of expressing what he does and doesn't understand, I am still amazed when he reveals what's going on inside his head. I've mentioned before that he doesn't communicate directly in a way that tells me exactly what he's thinking. Well, he just blew me away again this week as he let me in on the nuances of his understanding.

On Saturday we were at a baseball tournament and I kept Gabe busy playing with a tennis ball. His favorite game was to sit on the ground and play catch with me. I tried to get the ball to land in his lap or within arms reach. When I missed and he had to go retrieve it I would say, "I'm sorry." On one such occasion he went to chase the ball while I watched the game. I didn't apologize and didn't give it any thought. He did. He fetched the ball, sat back down, and before throwing it again said, "I sorry".

I thought it was cute that he connected the stray ball with the apology. But I was to learn that there was more to it. Two days later while putting Gabe in his chair I slipped and plunked him down a bit roughly. He looked up at me and exclaimed, "I sorry!"

I shouldn't be amazed at the evidence of this grasp of the meaning behind the apology, but I am. I also stand corrected, twice, and will try to remember to say "I'm sorry" before he can remind me!

Wednesday, July 29, 2009

Grandma status setting in fast

This conversation JUST took place.

Owen: Mom, what's that on your slipper?

Me: Just a sticker that got stuck there. (It says "Inspected by 24".)

Owen: I can take it off for you. You know, if you can't bend down that far.

Temperature control

At supper last night Lisa humored us with this bit of information.
"It's weird, whenever I eat hot food I get cold and start 'fridgering'."

Tuesday, July 28, 2009

Summary of Government Health Care Initiative

I already knew I didn't want the government getting into health care. Now I know why.

You can find an excellent run down on some of the offensive specifics of the package that is being proposed at This Site. You can view the long form, wordy official government documentation here.

Following are just a very few of the ugly details:
Page 30: A government committee will decide what treatments and benefits you get (and, unlike an insurer, there will be no appeals process)
• Page 42: The "Health Choices Commissioner" will decide health benefits for you. You will have no choice. None.
• Page 50: All non-US citizens, illegal or not, will be provided with free healthcare services.
• Page 58: Every person will be issued a National ID Healthcard.
• Page 59: The federal government will have direct, real-time access to all individual bank accounts for electronic funds transfer.
Page 65: Taxpayers will subsidize all union retiree and community organizer health plans (example: SEIU, UAW and ACORN)
• Page 72: All private healthcare plans must conform to government rules to participate in a Healthcare Exchange.
• Page 84: All private healthcare plans must participate in the Healthcare Exchange (i.e., total government control of private plans)

New Image

Let's see grey hair, wrinkles, glasses.
Do I look like.....

A Grandma?!!

In late February or early March, Lord willing, Joey and Jamie will become parents, making me just that. Check out Joey's blog for his announcement.

Saturday, July 25, 2009

Hide and Seek

Keeping up with glasses for a three year old is a challenge, even more of a challenge than it was keeping up with them for a two and one year old. Gabe is getting more and more clever at discarding or hiding the glasses.

He had been without them for over a week after losing them in late May. While I was in Milwaukee (in June) Bryce found them outside in the play yard just before running over them with the mower. They were slightly bent and missing a screw, but he brought the pieces in and put them on the counter. I returned the next day and when I went to take them in for repair I discovered I was missing a lens. It turned out that Lisa had seen the lens on the counter and took it outside--because we all know that every seven-year-old is just dying to have an optical lens for a play toy! While running along a fence it flew out of her hand. She searched for it but couldn't find it and didn't want to tell anyone that she'd lost it.

I got her to narrow down the area to a stretch of fence that was about fifty feet long. One side of the fence was mown, one was not. I looked, scoured, raked, and felt my way along that fence for over two hours. I gave up in hopes that darkness and a flashlight would do the trick. Keith joined me in the evening search and after 20 minutes he came up with missing lens, nestled in the grass on the mown side of the fence. Halleluia!

Just a few weeks later while I was in Minneapolis for a few days the diaper bag (with glasses safely stowed away) was left at the park and never seen again. We ordered a new pair. I felt a little better about the cost when the prescription was changed and the size of the frames enlarged.

We'd had the new pair for less than 6 HOURS when Gabe successfully removed and hid them! I made everyone search the three rooms he'd been in for almost an hour. Then, we extended the search to places they couldn't be, but probably were, but they weren't. I gave up.

The next morning I was hanging laundry and kept think "I was lost and now I am found". Not really applicable but it made me think that God knew where those lost glasses were. I prayed, explaining that I was out of ideas and if God wanted me to find them, He'd just have to show them to me. As I walked into the house I turned sideways going through the door with the laundry basket and this caught my eye.

I did a double take and looked a little closer.

I wondered why we hadn't seen them from inside. It was in a window in one of our main target rooms. Here's the inside view.

Friday, July 24, 2009

That Sums it Up

Deb and I have much in common--age, faith, gender, family, homeschooling. Until Gabe came along we each had seven sons and three daughters. Our time together is limited, which is what 850 miles will do to a friendship, and our emails are about as limited as our free time.

Today she shot me a quick message as we've been communicating about our upcoming annual week together at family camp and I loved this comment,
"Normal" only happens occasionally at our house and we usually don't recognize it."

Wednesday, July 22, 2009

Bright Boy

When Mendo and Light went home last month they left behind clothing that was quickly adopted by some of the younger boys. This morning, Owen put on a green shirt of Mendo's that has "Portugal" written on it.

I was holding Mr. Gabe when he first saw Owen. He got excited, pointed, and exclaimed, "Enno! Enno! Enno!"

We're not sure if he recognized the shirt or read the word 'Portugal'.

Tuesday, July 21, 2009

Surgical Success #2

Chet made it through his operation with flying colors. His nasal septum was repaired, two splints inserted into the nasal cavities, and the sinus passages were opened. He was told that he would feel very uncomfortable and stuffed up for a week until the splints are removed. However, he says that even WITH the splints he is breathing BETTER now than ever. He may have oxygen overload next week when they're removed!

The only glitch in the whole procedure was his reaction to coming out of the anesthesia. Everyone hears stories about the weird things people do as they wake up. Everyone hopes that will not be their story. Well, it was Chet's story. They said he was yelling and resistent and repeating everything the nurses said--

Nurse--Just sit back and be quiet.
Chet--You sit back and be quiet!
Nurse--Just try and breathe slowly.
Chet--You try and breathe slowly!
Nurse (to another nurse)--He's really narked up.
Chet--You're knocked up!

I'm sure they went home with a few humorous tales for their friends and family.

Monday, July 20, 2009

Change her name

Lisa was reading to Gabe this morning and I heard,
"That is SO weird, she never even rides a bike! And they call her Little Red RIDING Hood."

I tried to explain that it probably had something to do with riding horses and the cape she wore was a riding cape so that was the base reference to riding hood--blah, blah, blah. We're so used to the name we don't think about it, kids do.

What would you call her so it would make sense to kids? Anything I'm coming up with just falls flat.

One Down One to Go

Gabe is playing ball and reading books with Lisa, acting as if nothing out of the ordinary has happened. I'm still amazed.

Chet is taking off for Wausau in thirty minutes. Ellen is acting as his designated driver. We don't know what to expect in terms of the length of surgery. He's only been warned that he will be "out of it" from the anesthesia for awhile and in quite a bit of pain.

Please pray with us that this surgery is successful and will alleviate many of the issues Chet has struggled with for the past few years. We're thankful that God led us to someone who was finally able to diagnose the problem.

I will update you this evening. Until then, I'm going to hang out with Gabe and sew bridesmaids' dresses....

Saturday, July 18, 2009

Day Three

Here, finally, are the pictures I promised. Gabe is doing unbelievably, remarkably, asontishingly (insert your favorite adverb) well. If there had room on the ultrasound schedule this morning we would probably be heading home right now! Follow the picture story and I'll give you the run down.

In the hotel room before surgery and after his bath. Gabe loved sitting propped in bed with the pillows by Daddy.

Just an hour before surgery on Thursday an unsuspecting Gabe thoroughly enjoyed the playroom.

Here he is in his room at 2 PM following the open heart surgery. His connections include: a catheter, a chest drainage tube, two pace leads (in case his heart needed pacemaker/type help--it didn't), an IV line in each ankle, an arterial line in one wrist, two IV lines in the other wrist, three lines in his neck, a brain oxygen sensor, a kidney oxygen sensor, an overall blood oxygen sensor, and I think that's all. The functions of the lines included administering fluids, antibiotics, pain medications and detecting pulse, temperature, arterial blood pressure, venous blood pressure, and respiratory rate.

Believe it or not, these pictures were taken just 28 hours later, on Friday evening. The only attachments remaining here are the two pace leads and an IV lead in his left ankle!! Gabe spent Friday evening playing in the playroom, reading books and playing toys and cars in our room, and watching the Disney and Nick channels. He especially enjoyed Dora the Explorer, Diego, and High School Musical. In between times he was up in the bed, down on the floor, over on the couch, up in the bed, down on the floor, playing with the foot controlled sink, up in the bed, down on the floor, up on the couch....get the picture?

Hanging out with Papa and Grandma--his activity level made Grandma VERY nervous!

Gabers finally conked out at about 9:15 during one of his many trips to the couch to chill with Keith. We gave him about ten minutes to make sure he was out and transferred him to the bed. Afraid he would wake up and make an escape, I slept with him. He woke up once at about 12 and I did, indeed, prevent him from climbing over the edge (they're bringing in a crib today for our overactive guy). Other than that, Gabe slept soundly and didn't even wake up for his blood draw at 4 (really? they're in the rooms drawing blood at 4 am?!! wow.). Because his lines were out they had to poke him for the blood and all he did was wince for a few seconds. At 5 he was up for good and watched the Disney cartoons while I slept a little longer.

So far this morning Gabe's played in the playroom, has forcefully let everyone know he does NOT appreciate their presence or interference in his life, had a sponge bath, and ate a big breakfast. I left him on Keith's lap watching golf. That should put him to sleep.

The final bit of news is that he is scheduled tomorrow for an early morning sedated echo to recheck his heart. At that time they'll remove those chest wires and after he wakes up and eats breakfast we'll be discharged. The only "complication" we're looking at is a small amount of congestion in one lung. When the doctors did their rounds one was concerned about the fluid and pushed for doing the echo tomorrow (another plan was to do it this afternoon and send us home today) to give them time to recheck the lungs. Our surgeon told Keith that under normal conditions no one would be kept for the insignificant amount of fluid they were seeing. However, being less than 48 hours out of open heart surgery and showing every sign of being ready to go home is not considered "normal conditions".

Our next hurdle will be keeping Mr. Gabe from harming himself and keeping everyone from picking him up under his arms. He technically has a "broken" sternum and, well, all of the sensitivities that come with opening your chest cavity, stopping your heart, cutting it open, and sewing a patch into it! I plan to buy four or five t-shirts and fabric paint "Don't pick me up" on the front and back to remind us all that we do need to be careful with him.

We are thanking God for His goodness that is packed down and overflowing in ways greater than we could have imagined. We also thank all of you who have prayed for Gabe with us these past few days and weeks and for including us in the prayer lists of your family and church groups. We know that God's people have played a large part in this remarkable outcome for Gabe.

Friday, July 17, 2009

Day Two

I brought the camera down to the computer room this morning to try to get the pictures on here, but I forgot the cords in the room. I'll try again next time.

Gabe had a rough night, so did I. The good news is that overall he's doing great. He's healthy and should have a lot of lines and some tubes removed today. He started drinking water and can move on to juice and his beloved rice milk any time. The drainage tube will probably remain in his chest for another day as there's been a fair amount of fluid draining. That brings us to our rough night.

I learned very quickly what the protocol is when Gabe's morphine wears off! The overal anesthetic wore of at about 11 last night and that's when he really needed the pain relief. But, the morphine level he'd been on was slowing his breathing too much (could it have been because of the combined effect of the residual anesthesia?) so it was decreased and my 11 to 7 nurse seemed to think it was best to try to avoid the morphine altgether. That meant that every 2 hours and 15 minutes to 30 minutes Gabe would start to get restless, sit straight up in bed (not good), thrash around, and cry. His heart rate would increase, his blood pressure would soar, and I could hear the fluid swooshing out the chest tube. The only thing that consoled him was an IV injection of morphine. His "I'm in pain cry" was always accompanied by the repetition of a word or phrase that had nothing to do with how he felt. Some of his cries were, "Bye-Bye, Bye-Bye, Bye-Bye", "Brycie, Brycie, Brycie", "I want, I want, I want", "Eesa, Eesa, Eesa", "Book, Book, Book", and "Wake up, Wake up, Wake up". Those phrases represent a lot of helpless episodes.

Finally, this morning I got the full attention of my morning nurse and the PA and Gabe has been put on an IV pain reliever that will last for six hours and the morphine will be supplemental. Hopefully, this will take the edge off. When he's awake and not in pain he's a calm, contented little guy. He watched an hour of Diego and Dora the Explorer this morning while I finally got some sleep. I get to sleep (OK, not much sleeping) in his bed with him and that has been a huge comfort to Mr. Gabe.

I'm heading back to be with Gabe and Keith and will try to get the photos of little mister up here later.

Thursday, July 16, 2009

Successful Surgery

Gabe was taken from us this morning at 8:05 AM and the surgeon came to us with the "all done" report at 1:20 PM. The repair was a success and things went as smoothly and well as they could have gone. We should get to see Mr. Gabe any minute and will be able to go to his room in the ICU in an hour or so.

I have more updates, information, and photos that I will try to put up here during the free hours over the next 4-7 days (the expected length of Gabe's hospital stay).

Thank you for your many prayers. We are thanking and praising God for this goodness.

PS We just saw Gabe as he was being wheeled to the ICU. He looked so good! They said he woke right up and was too energetic and had to be sedated. That's our Gabe!

Thursday, July 2, 2009

Surgery Dates

Gabe's open heart surgery has been scheduled for 8 AM Thursday, July 16. Keith and I will go down on the 15th for his preoperative visits. I'll post then from Milwaukee.

The title says 'Surgery Dates', plural. Chet is having surgery the following week, details are in the next post.

Please pray for Chet

Poor Chet has been sick, sick, sick. He started running a fever with headache and dizziness 17 days ago.
On day 4 he got a red, sore throat and later developed sores in his throat (still had a fever).
On day 5 he was the best man in a friend's wedding, surviving the few hours on ibuprofen.
On day 7 he went to the doctor and was given an antibiotic (tests ruled out mono and CBC was normal).
On day 9 (no change, still running 103 degree fever) he switched antibiotics and again blood tests were normal. Tests were run for strep and CMV (both normal).
On day 11 he had his first fever free day.
On day 12 he headed back up to school for summer classes and a job.
He called that night with a high temp again and Keith and Ellen drove up to get him.
On day 15, after three days of rest and no fever, he went back up again.
On day 16 he dropped the class--too weak and sore to try to get through it. He tried taking DayQuil to cope with the sore throat and devoloped a full body case of hives!
It's day 17 and he is one sore throat, itchy, coughing, nasal draining, night sweats miserable guy.

The only thing we know for sure is that there IS a sinus infection in there. He is scheduled for surgery on July 20 to reconstruct his nasal cavity and open the passage from the nose to the sinus (deformities that we FINALLY got diagnosed properly....we hope).