Monday, June 30, 2008


Ralph has started crawling this weekend! Sometimes he crawls a few feet and then flops back down on his belly 'cause he's faster that way. Sometimes he crawls all the way across the room. Now we have to keep the basement stairs gated all the time.

Our Sunday school class did the nicest thing yesterday. After daddy updated everyone on Ralph's eventful week, they said that they wanted to do something for him. Since the device that closed the hole in his heart looks something like an umbrella, and he's living under the umbrella of the prayers of many people, and under the umbrella of God's protection, about 8 or 9 people opened up umbrellas in class for him! Isn't that fun? Too bad Ralph and I were running very late and were not there. ;( Good thing we don't believe in bad luck!

Today was Ralph's 14 month check-up. His pediatrician really spent a lot of time with us today. She was so happy to see him looking extremely healthy. Of the 4 shots that he is supposed have today we settled on 2. I'm so glad she doesn't give me a hard time about waiting for certain immunizations. It is nice to have a doctor who "gets" me.

I've got to find a way to get over to K-mart for cereal this week. Our cereal stock is about empty. We are really broke, but I've got coupons for cereal that make it $0.49 per box!

Saturday, June 28, 2008


I've been wondering if the heart repair would help Ralph's pulmonary hypertension and to what extent. I've been cautioned that the ASD was most likely only part of the problem, and possibly not a big part.

So I've been cautiously watching him over the past few days. Watching and waiting for a definitive sign that he is improving. Trying not to get my hopes up too high.

We have been struggling to keep the cannula on. He likes to rip it off and chew on it. He will do it whether I am watching or not! So naughty! Lately he has taken to ripping the stickers off of his face and trying to eat them! This really scares me. Did we get his heart repaired only for him to choke and die on a stupid face sticker?

He has also been ripping the tape off of the sat probe and eating it. For this reason I only monitor him at night. The alarm went off last night (OK, 4am) and when I checked him the probe was off and the tape was gone! In his mouth! So I guess I can only spot check his sats now.

I just put him down for his morning nap and I decided to spot check. 100%!!!!! He is pegged at 100% on 1/4 liter. He is not drifting around 97-100 but PEGGED! I'll take him down to 1/8 liter now and see how he does, but I'm considering this proof positive that we are seeing significant improvement.

A great movie to see...

I love to watch old movies with my older children. All kinds of older movies, from Gone with the Wind to the Rocky movies. I think of it as a sort of cultural education. It works even better when we all read the book first.

Several years ago Wesley and I read The Hiding Place. The book was terrific, but we had never seen the 1975 movie until last night. I was shocked and delighted to see a scene where Corrie TenBoom was leading and teaching a beautiful group of children, some of whom obviously had Down Syndrome. I must have forgotten this part of the book!

A little later on in the movie, Corrie was being questioned by a Nazi officer about her "work." He is digging for information on her role in hiding Jews. He didn't want to hear about her watchmaking so she responded by saying, "Oh, then you're referring to my work with retarded children?"

Here is the exchange recorded in the book:

"Your other activities, Miss ten Boom. What would you like to tell me about them?"

"Other activities? Oh, you mean- you want to know about my church for mentally retarded people!" and I plunged into an eager account of my efforts at preaching to the feeble-minded.

The lieutenant's eyebrows rose higher and higher. "What a waste of time and energy!" he exploded at last. "If you want converts, surely one normal person is worth all the half-wits in the world!"

I stared into the man's intelligent blue-gray eyes: true National-Socialist philosophy I thought, tulip bed or no. And then to my astonishment I heard my own voice saying boldy, "May I tell you the truth, Lieutentant Rahms?"

"This hearing, Miss ten Boom, is predicated on the assumpition that you will do me that honor."

"The truth , Sir," I said, swallowing, "is that God's viewpoint is sometimes different from ours- so different that we could not even guess at it unless He had given us a Book which tells us such things."I knew it was madness to talk this way to a Nazi officer. But he said nothing so I plunged ahead. "In the Bible I learn that God values us not for our strength or our brains but simply because He has made us. Who knows, in His eyes a half-wit may be worth more than a watchmaker. Or- a lieutenant."

Indeed. She articulates her view more fully in this quote: Many years ago I worked in Haarlem [in the Netherlands] among mentally retarded people. I had several Bible study clubs with them it was great work. You and I need the Holy Spirit to understand eternal truths. The foolishness of God is the greatest wisdom. We cannot understand it with worldly wisdom. . . . The mentally retarded people had very little wisdom of the wise. But the Holy Spirit gave them a great deal of the foolishness of God, which they accepted much more easily and without doubts. They also understood it. Then I saw the truth of the Word that we must become like children, so that we can enter the kingdom of heaven. I could never tell them too much of God's love. . . their faces was radiant.

How sad and ironic that the Netherlands, a country with a rich Christian heritage and Corrie's homeland, should be the first to legally embrace euthanasia.

Friday, June 27, 2008

No place like home!

We are home now for a couple of days and as you can see, Ralphie is no worse for wear! Here he has disassembled the DVD shelf from the entertainment center.

We ended up leaving the hospital at about 11 am on Wednesday morning. Almost exactly 24 hours after we checked in. Isn't that amazing? The whole experience was uneventful. Isn't that amazing?

I was hoping to see immediate improvement after the surgery, but I'm not sure what to look for. When I do notice little changes, I have to wonder if I'm only "seeing things." His sats seem to have improved, I think. But he's also been ripping the cannula off to chew on. He has also taken to quietly eating the sat probe! His eyes look a little different...less puffy at times.

Thursday, for the first time, I notice Ralph crawing on hands and knees! This is a pretty big step. It requires upperbody strength and coordination. He is also doing great bearing weight on his legs. He can stand for a few minutes against the bench if I help him to his feet. As soon as his punctures are well healed we will be attending water therapy again to work on walking!

Tuesday, June 24, 2008

Looking great.

Ralphie's been in his own room this evening. He is happy and playful as always. He has been very good-not tearing his cannula off, not tearing the sat probe off, not tearing the IV off.

He was taken downstairs for an x-ray earlier. The nurse took him down laying on a pillow in a wagon. Apparently, he enjoyed the ride quite a bit! Later he had an EKG. It was some trick to get him to lie still and not pull off any of the many wires.

I took him to the playroom for awhile, but his sats were a little low so I took him back to his room. I then noticed that his oxygen tank was never turned on! He tried to laugh when we played catch with a squishy ball but has no voice. I can't wait to hear him giggle again.

I asked the surgeon if he made any pressure measurements after the device was in place. He did, but said that there was no real difference. However, I'm sitting here tonight watching him sleep and watching his oxygen sats and I can tell somehow that he is better. I don't always trust my intuition anymore, but...I really think this time is different. Time will tell.

Update #2 June 24

Everything went well! The device closure was very straightforward, acording to the doctor. Yay! No open heart surgery! I have not seen Ralphie yet, but I think he will be out of recovery very soon. Thank you all for your generous prayer support. Please pray for continued healing for his lungs and for the pressures to return to normal. We hope to be going home tomorrow.

June 24 Update #1

The nurse from the cath lab called at 12:51pm and said they were going ahead with the device closure. 14 minutes! Unreal. I can't believe it only took 14 minutes from the time they took him. They must be quite certain that it will work, huh?

June 24

After a crazy morning of pre-op stuff, Ralphie was taken into the cath lab at 12:37pm today. The doctors and nurses have all commented on how much weight he has gained and how healthy and energetic he looks!

After they do an echo they will make a decision on whether to attempt a device closure of his ASD. They will call me and let me know at that time. It should be about an hour. I'm going to get a bite to eat now. I didn't think it was fair for me to eat breakfast when Ralph couldn't have anything!!

Pray for God to guide the surgeons hand and for a successful device closure. I will update this when I have more information.

Monday, June 23, 2008

A favor to ask...

I have a little favor to ask. Like many of you, my children at home will be checking Ralphie's page for updates. It means so much that people all over are praying for him. Since they can read the comments would you mind leaving a little note of encouragement for them? They are concerned about little brother and also missing mommy. Daddy and I have decided that he will not come up unless the procedure does not work and Ralph needs open heart surgery this week. He is feeling a little blue about this so please remember him as well. I will update again tomorrow afternoon when I know more. Bless you!

Sunday, June 22, 2008

Amplatzer Applause

Tomorrow Ralph and I will be on our way to Kansas City for Ralph's heart repair. I would like to meet the person who came up with the device that the surgeons will use. It is called an Amplatzer and it is about the coolest thing I've ever seen.

It is wire mesh shaped into two flat discs and a waist in the middle with fabric inside. Think of a skinny yo-yo. The whole thing collapses and is inserted into the heart through a catheter! The surgeon opens it up inside the heart with one disc on either side of the hole to close it off. Who engineered this thing? I hope they are getting paid handsomely! How did they form the wire mesh just right so that it can be collapsed and open up into this special shape? How many sweet little babes have been spared open heart surgery? These are the kind of things I think about.

So, if this procedure works we may be coming home Wednesday evening. If not, open heart surgery is scheduled for Wednesday. Which reminds me of "Gone With the Wind," and the famous line of Scarlett's: "I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow."

So do I pack for two days or do I pack for a week?

Saturday, June 21, 2008

Rose on TV!

Rose was on TV tonight! The video is posted here:

She is the first t-ball batter in the video. It's all fine and good to be on the news but the sad part is what some scumbag thief did to the ball fields earlier this year by stealing over 600 feet of copper wire. Now there are no lights and no irrigation for the fields, no electricity for the concession stand and the restrooms are dark. Along with the crazy wet weather, this has caused scheduling nightmares for all the rec league families and major headaches for the league officials.

On another note, the crew is back together. Richard returned from England yesterday. He claims to have taken 800 pictures over the past 10 days. I wonder on whose computer he plans to download these!?!? Chipper returned dirty, stinky and worn out from Quivira Scout Ranch today. James is home from Arkansas so we are all together for a few days at least.

Thursday, June 19, 2008

Ralph's Makeover

Finally! A haircut.

We had arranged for Ralph's first haircut on his birthday in April but, sadly, we ended up going to the hospital that day. Pneumonia. Figures.

Now he is healthy and life has been good. My dear friend Anita came all the way over to our house to give Ralph his new look. She is very talented at trimming a moving target.

He looks so much older now. Kind of reminds me of Wesley's (my oldest, and oddest) baby pics!

Monday, June 16, 2008

On my mind...

Things I can't get out of my head:

  • I can hardly believe that Ralphie's heart repair is happening next week.

  • I haven't crossed off much of my summer project list.

  • Are we losing our humanity in the pursuit of comfortable, convenient, pain-free lives? What would life be like with no more DS babies? Abortion rates for babies prenatally diagnosed are reported to be over 90%. Now this is sure to increase that rate.

  • When will our baseball games stop getting rained out?

  • I really hate doing dishes.

  • The house seems really empty with only six children and no daddy. Richy is in England. Chipper is at camp. Dad is in Arkansas.

  • Ralphie is getting cuter and more fun every day. (I really do sit and think about this.)

Sunday, June 15, 2008


Ralphie is growing up so fast I can hardly believe it! Last night daddy was feeding him some ice cream when he made the sign for "more"! I read about babies signing all the time. I occasionally use signs when I feed him, or when we see frogs or fish. Part of me wondered if I was wasting my time, so I haven't worked with him a lot. Plus I always seem to have something in my hands, which makes it difficult to sign. This is cool, we will have to keep this up!

Ralphie also said his first word this week! Thursday night I set him down in the family room with daddy and then I left the room. Ralphie started shouting "MAAAAAAAA" over and over. I wondered what was going on, so I came back into the room and he stopped yelling. Daddy and I just looked at each other like, did you hear that? I left the room again. Ralphie started yelling "MAAAAAA" again! So, it is now official, Ralphie says Ma. I'll take that!

Today Ralphie sat in a highchair at a restaurant for the first time. I know, what on earth were we thinking? Only a little over a week until his surgery and we take him out to an enclosed public place. Insane. But, he did great! He ate some new foods like mandarin oranges and jello and left a huge mess behind. He's come a very long way.

Ralphie's great-grandma's birthday is today. Isn't she beautiful?

Then. And now.

Friday, June 13, 2008

Friday the 13th - our blessed day!

I took Ralph to the cardiologist this morning. I always love to take him to see Dr. M, even when the news is not the best. We love Dr. M. He has a positive and loving attitude toward us and our son.

He came to the hospital around midnight the night that Ralph was born. He spent some time with us that night explaining what was going on with Ralph's heart. He drew a great big picture of a heart and labeled it nicely, all this in the middle of the night.

Over the next month of so, he would come to the NICU to personally do Ralph's echoes. He never asked me to leave and always explained everything to me as he went along. I didn't realize how spoiled we were until we transferred to the big city children's hospital later on. There a tech would do the echo and we had to wait at least a day for the doctor to read it and report back.

Today's visit was a good one. First, all the nurses are in love with him, of course. Today they were so surprised to see him so strong and healthy and energetic. It was nearly impossible to get good O2 readings and blood pressures because he wouldn't sit still! Dr. M was all smiles as he came in to do the echo. He always asks about how daddy is doing if he isn't with us.

The echo looked great! Ralph's left ventricle is smaller that last time! His tricuspid valve regurge is barely detectable!! This means that he cannot measure the blood pressure in the lungs. This is a good thing! I can't stop using exclamation marks!!! He showed me Ralph's ASD also.

He said that he thinks that the device closure, which is planned for June 24, will be successful, based on the appearance of the hole. There appears to be sufficient structure around the ASD in which to anchor the Amplatzer device.

It was so good to hear these words. In my experience, doctors never want to make any predictions. Ralph has open heart surgery scheduled for June 25, just in case the device closure does not work. I know that plenty of babies have had open heart surgery and they do just fine, but the thought of it is enough to break my heart. I'll be one happy mommy if we get to cancel that surgery!

Isn't this great news? Dr. M's P.A. asked me to call her and let her know how everything goes on the 24th. You see, we will be back at the big city children's hospital. The doctors there will call our cardiologist here with results, but she asked me to call her personally. She said she would rather hear the news from me. Aren't we blessed?

On a convicting note, a funny thing happened in the waiting room today. A woman that I recognized checked in at the desk and sat down by us. She was one of the doctors we met at the NICU. I still remember her negative comments to me and they still hurt. I mean, really, don't EVER, EVER tell me that my son will not be able to do something! Who is to say what is impossible?

My oldest son, who came along to help me out today, asked me if I was going to say hello to Dr. Sourpuss. I told him that I was still holding a grudge against her. As soon as she sat down by us, however, Ralphie started flirting and babbling and waving to her! My son whispered to me, "I guess Ralphie doesn't hold a grudge." No, he doesn't. He has a lot to teach me.

Wednesday, June 11, 2008

Homecoming and 1 Year Later

Ralphie had his Rainbows teacher and physical therapist over to the house today. It is nice to have physical therapy that makes house calls! Especially with a little guy who is so susceptible to respiratory infections. I'm wondering if families in other parts of the country have this luxury of in-home therapy. We were discussing his progress over the year when I realized that I missed the anniversary of Ralphie's homecoming.

On June 9, 2007 he finally escaped from the NICU and got to come home for the first time. (If you want to read about the things we went through during those first 7 weeks of his life, you can visit until I get his story placed here on this new blog site.)

I remember that daddy had to drive 3 hours that day with a brand new car seat to come get me and Ralphie. Ralph had taken a car seat test the day before in a crappy hospital car seat and the charge nurse was not about to let us out of the hospital in anything else! This was a real letdown to daddy since he spent hours picking out the perfect new car seat that very morning. All of a sudden it hit us - as soon as we walk out the door, he is ours. So we left the building with two seats, switched the baby over in the parking garage, and dropped the hospital model off at a non-profit org. Naughty, huh? It was such a stressful day and I was hoping that someday I'd look back and be able to laugh. I'm not there yet. Especially since we are headed back to the same hospital in two weeks for heart surgery.

So here we are after one year

  • Ralphie can stand up straight and tall with a tiny bit of spotting. I have to pull him up, but he can do all the work after that.
  • He can hold his own bottle and he can feed himself finger food.
  • He can army crawl and is toying with the idea of crawling on all fours.
  • He is babbling and jabbering, no words yet, and can wave "hi" and "bye"
  • He weighs 20lbs!!! I have no idea how tall he is - I just never seem to care enough about this to remember.
  • He is on 1/2 liter of oxygen around the clock.
  • He takes 4 medications: Sildenafil, Lasix, Potassium and Sodium.

There were moments that I didn't know if we would make it this far. Pulmonary Hypertension is so scary, I walk the line between "no expectations" and "high expectations." It can be maddening at times.

Praise God for bringing us this far. Praise God for this life changing experience. Praise God for the privilege of raising Ralphie.


It's nearly 2pm here. My Richard will be taking off soon. He is headed to England for an educational tour. We discussed this trip last year, but the price tag was too much for us to handle. Then Ralphie came along and the expense of a trip like this was out of the question.

Shortly after this past Christmas I got an interesting phone call from the tour coordinator from Richard's school. A family from the school wanted to contribute some (a lot) money toward this trip for him. A family who wished to remain anonymous. Would we accept?

Of course, we accepted this generous offer. Richard went out and got a part-time job and participated in fundraisers at the school to make up the rest of the money. He actually has three jobs - picking up chairs at church, umpiring for rec league baseball, and Papa Murphy's pizza. I'm quite proud of him.

Pray for travelling mercies for Richard and the entire group. He has the camera, so I won't have any new pictures for the next 10 days.

Tuesday, June 10, 2008

When I wake up...

this is what I see in the crib by my bed. Oxygen doesn't do a whole lot of good like this! He has a way of wrinkling his nose so that the prongs pop out. He has also become quite bold at ripping the whole thing hand...while I'm watching...with a cheeky grin on his face. He's turning into a little stinker. I guess that means he is feeling OK.

Many of you (hi Mom!) will be happy to know that Leroy got a
haircut today! I'm so in love with his curls that the thought of them going away just makes me so sad. Well it looks like they are here to stay!

Monday, June 9, 2008

1st Day Away

Today was my first day away from Ralphie! I don't believe I've ever been so far away from him before...but he did just fine at home with big brother today.

I spent the day in Manhattan, KS. You know you are from Kansas when you think of Manhattan as the home of K-State and NOT New York City! Richard had a baseball exposure camp today. Exposure meaning the players show off what they can do on the field. It was a great learning experience for both of us. He got a chance to play with some very fine baseball players and compare his skills to theirs. Now he know what to work on for next season.

It felt strange to be back in Manhattan for the first time in nearly 20 years. Much has changed! Some of the old joints are still around...Last Chance Saloon, Bushwacker's, Varney's. I just wish we had more time to explore. All in all...a very relaxing day.

Saturday, June 7, 2008

Uh Oh...

Rosie has a cough this morning. A nasty, croupy, scary cough. How in the world am I going to keep her away from Ralphie? His surgery is just a little over two weeks away.

I wish I had a safe room for him, like little Parker at This sweet child has pulmonary hypertension and Down Syndrome, just like Ralphie, among other things. They try to keep him in a special room where anyone who comes in to see him has hands washed and sanitized.

Say a prayer for Parker today, if you would. He has been through major surgery lately and his family is facing financial ruin from the TREMENDOUS bills. They are not able to find help because they are not poor enough...yet. They made the mistake of trying to pay their bills.

Each year their hospital raises funds through the Children’s Miracle Network. We are talking BIG money here. And as part of their promo they talk about how your ability to pay makes no difference to them. Yet they get collection notices often. Turns out the funds are reserved for those with no insurance and people from other countries. It kind of makes you feel like a dope for being responsible enough to carry health insurance.

Thursday, June 5, 2008

Bright Spot

Today Ralphie and I had lunch with a dear friend and took a tour of the Bright Spot for Health. I've been dying to check this place out for months now. The pyramid is visible from the highway nearby but not everyone who drives by knows what this place is all about.

Their definition of health is having the reserve to do what you need to do and want to do with energy and enthusiasm. Well, Ralphie's reserves have

always been low and I'd like to see what I can do to help build them up. I've always been a believer in complementary medicine - It just makes logical sense to me. I don't get the pyramid thing, though. A little too weird, even for me!

My dear friend and I have been close for over 6 years and I love her dearly. She just happens to have a daughter in her 40's who has Down Syndrome. I'm happy that God brought them both into my life so many years ago. I'm certain that it prepared me, in a way, to welcome Ralphie into our family.

Wednesday, June 4, 2008

Feeding the Crew -or- A Tuesday Night Ritual.

I just got done ordering my coupons for the week! We don't take the Sunday paper so I never get to clip coupons. That's just as well because I've been ordering coupons from for over a year now. Yes, you can BUY coupons!The Coupon Clippers

So every Tuesday night I stay up a bit late and check the Dillon's ad online. The new ad for the week is normally posted sometime around midnight, give or take. I open another window and check for coupons for any items that are on sale that I would actually use. For instance, this week VanCamp's Pork and Beans (daddy's favorite) are 2 for $1. I ordered 5 (the limit for this product) coupons valued at $0.50 off 4 cans. Since Dillon's doubles coupons up to $1.00 I get 4 cans for $1.00. That's a "stock up on it" price!

This week I'm also getting practically free toothbrushes, great for donating to shelters and such. I'm getting spoiled. I rarely ever pay more that $1.00 for a box of name brand cereal. I grab the good coupons, wait for the sale and stock up. I have to hide these things, however! The kids go a little nuts when I bring home a new load of their favorite cereal!

Last week I stocked up on $0.39 Campbells Tomato Soup and $0.50/pound pork sausage. A few months ago it was canned tomatoes and tomato sauce for @ $0.20. Since I stock up the freezer with marked down ground beef or turkey and I use dry beans, I can whip up a batch of chili whenever I want for next to nothing.

Yeah, I'm cheap. I'm proud of it, too.

Monday, June 2, 2008

A milestone.

I took Ralph to have some blood drawn today. He needs his electrolytes checked again now that he is fully recovered from the dehydration of a couple of weeks ago. His sodium levels were dangerously high at that time. Now we need to know if he should restart his sodium supplement.

I also wanted the doctor to see Ralph because his hands are peeling. Sheets of skin have been coming off for a few days now. Turns out that it may be an after effect of the dehydration or possibly another type of infection. Not terribly worrisome. At least his lungs are still clear as a bell!

Oh, the milestone...Ralph finally tips the scale at 20 lbs.!!! Ok, he had on a diaper...but I say it counts. I'm sure the people in the waiting room heard me yell YES!! when I saw the scale read 20.0 right on the nose.

His heart cath is in three short weeks. A lot is happening between now and then so I'm sure the time will fly. Richard will be leaving and returning from England. Chipper will be leaving and returning from camp. Baseball games gallore! James will be in and out of town. June 24 sounded like a long way off last it's just right around the corner.

God willing, no more delays.