Cardiologist on Friday!

**Update**
Ralph has been sick since Thursday night. Probably Rotavirus, grrrrr! His cardiologist appointment has been rescheduled for Tuesday, Mar. 3.

This is my 199th post here. I hope to have a special surprise for my 200th post, so stay tuned, OK?

Ralph sees the cardiologist on Friday. He hasn't been seen for three months! I feel really good about him right now. Tuesday morning his O2 alarm started going off intermittently and I couldn't figure out why. Every time I looked he was in the high 90's. Finally I noticed that his reading was flirting with 100% and the alarm was set to go off at 100%.

This morning Ralph was sitting up in his crib when I woke. The sat monitor doesn't generally work well when he is awake, but he was sitting very still and I could tell by the waveform that I was getting a good reading. He was at 96% AND he was not wearing his cannula.

I felt comfortable enough to take Ralph to church this morning without his oxygen tank. He pulls the oxygen off enough at home, that it is hit-or-miss on the best of days anyway. I quilted for awhile with my friends while he played unencumbered in the nursery. When we came home the cannula went back on, no problem! He didn't mind a bit.

So, about the cardiologist...would you pray? First, that we might see at least some small improvement in his pulmonary pressures. Secondly, that he will tolerate the testing. I truthfully don't know what it will take to get a good EKG reading...he is so active and grabby. All those wires are irresistible to an almost-two year old. And, sometimes he is well-behaved for his echo cardiogram and sometimes he is not.

Also, I know you know that I love our cardiologist-nurse practitioner team, but it may be time for Ralph to start seeing a pulmonologist. If this is the case, I need it be crystal clear to me.

I'm so in love with Ralph these days! He is really changing, growing up, losing that baby look. I'll try to get some pictures up soon. Then you'll see.

Leroy

Leroy will be four years old next week. He is amazing smart! He is loud! He is solid!

He knows all the lines from the Chipmunks movie. He zips his pajamas like Mr. Rogers zips his sweaters...all the way up then down a bit. He never forgets to brush his teeth before bed. He calls Lowe's the "hard-work-Walmart." He cracks me up. I couldn't imagine life without him.

On Friday afternoon, I was at the auto repair shop, talking to my friend, K. I know how much Leroy likes this place, so I took him with me.

K says, "So, Leroy...you want to be a mechanic when you grow up?"

Leroy replies, "Nope, I'm going to be a truck-fixer."

He never missed a beat.

Just got back...

Just got back from the doctor. You guessed it, Ralph's sick. He has been super picky about food for the past week. He really only wants milk or juice. He started "squeaking" a couple of days ago so we dug out the nebulizer again and started up with Pulmocort and Albuterol. Last night he started coughing a lot.

The strange thing is that his sats have been great! I did bump him up to 1/4 liter of oxygen because he sounds so rattle-y, but he's been pulling 97-98% at night. That is, until he rips the cannula off and drops into the 80's. I'm feeling guilty because lately I've been sleeping through the alarm! I'm generally a very light sleeper.

I honestly never know when we leave the house headed for the doctor's office if we'll be coming home in an hour or so, or whether we'll be headed up to the hospital! I try to be pretty aggressive with the breathing treatments and snot-sucking at home before we even see the doc. Once they get you in the clink...it's very difficult to get out! If you've ever considered signing your child out AMA, just know that they will sic the authorities on you!

I'm thankful that today was different. We suspect that Ralph has a sinus infection. He is wheezing so much that the doc couldn't have heard any lung crackles if there were even any. He'll be on oral steroids for a couple of days. If he's not better by Friday, we may start an anti-biotic. We left the office with some new goodies...two new super-sized snot suckers and a new neb mask.

Whew!

Auntie Deb? Can I smack you?

I found a little girl at the grocery store tonight. She was hanging out in the toy aisle. Maybe 4 or 5 years old. By herself.

I was browsing for a couple of upcoming birthdays. You can find some good clearance prices at Dillon's right now, by the way. I spent quite a bit of time looking at Lego's and other boy stuff. Then I spent some time looking at some girl stuff.

I'm taking my time...watching this little girl out of the corner of my eye. She has a little kid cart with some groceries in it. No grown-up in the vicinity. The store entrance is at the end of the aisle. If I had any ill intentions, we could have been out the door in 10 seconds or less. I would appear to be removing a bratty out-of-control child from the store.

I'm appalled that I'm putting myself in the place of a predator, but something here is not right. I can't walk away from this little girl. Where is her mom?

I was walking down the aisle, ready to check out and leave, when I heard a crash. The little girl had dumped over her little cart. I turned and looked. It took me a moment, but I walked over to help her pick it up and replace the groceries. I asked her if she was OK, and she said yes, very quietly.

That was the last straw. I sent my hubs and Chip to check out while I hurried to the customer service desk to let them know about the little girl in the toy aisle. The girl at the desk called another associate to check it out so I went back to stand in line with my guys.

Then I see my little girl wandering along in front of the check out lanes. She is obviously still alone! I walked over to her and asked, "Where is your mommy? Are you lost?"

She said her mommy was at work!

OK...I said, "Who are you here with?"

She said her Auntie Deb is taking care of her.

I took her cart and led her over to the customer service desk. I told her that the girls that work here will help her find her Auntie. I left her there, confident that all was OK. Whew!

I was paying for my groceries when I saw a woman walk past the customer service and walk away with the little girl. I hoped that was Auntie Deb. I wanted to strangle the woman! I wanted to confront her with a "What were you thinking!?!?!?!" Hubby said to let it go. He's right.

But I still wanted to smack her.

Ralph gets his first computer...well sort of.

Ralph has earned a very bad reputation around this house lately. He has demonstrated a talent for the destruction of computer keyboards.

First he ripped a few keys off of my computer. No big deal. I was able to put them back on with a bit of patience.

This kid is fast. I mean you cannot turn your back on him because he crawls like greased lightening! Dad found this out when Ralph took some keys off of his computer one day.

Next he got Thomas's school computer. He grabs at the keys repeatedly until they pop off! One of the keys went flying and is still missing!

Then the very worst possible thing happened...Ralph got to Wesley's computer. Wesley just bought his computer after saving up for it and college all Fall. Ralph snuck in to Wesley's room. He had lots of time to do his work before he was found out. Not only did Ralph rip off many keys, he destroyed the seatings.

Did Wesley purchase an optional accidental damage warranty? Nope. He replace the keys that he could replace and has been limping along without the others for about three weeks. Last Friday he left his computer unattended in Ralph's reach AGAIN! This time was just as bad.

Wesley and Ralph are close...I mean tight! They adore one another, but I thought Wesley was going to wring Ralph's little baby neck! I told Wesley what I told him weeks ago...call the manufacturer...see what they can do. This time he actually called! They are sending a brand new keyboard and it will be here tomorrow!!! See...you should always listen to your mom.

Today Richard found this old desktop keyboard for Ralph. I wasn't sure if he would like it, 'cause it's not a laptop keyboard like he enjoys so much. He was quite tickled, though. He had a great time pounding on it and laughing out loud. We'll see if this helps reform destructo-baby.

Planning a trip to Holland

For most of us parents of children with Down Syndrome, our trip to Holland was a surprise. Our trip was chosen for us. Some of us went willingly, joyfully, some of us kicking and screaming! But Holland chose us, we didn't choose Holland. (If you don't know about Holland, you should read Emily Perl Kingsley's "Welcome to Holland.")




Every now and again you might meet that rare individual who is choosing to take the trip. Some people who have never been there are baffled. Why would anyone choose this life? Others who have been there, like me for instance, are tickled that someone outside the club actually 'gets' it!


I know of many parents of children with DS and other disabilities who go on to adopt children with DS and other disabilities. But there are those rare parents...ones that have no children with special needs, but go on to adopt and commit their lives to disabled children anyway. Shelly and her husband are great examples. They have made two trips to Eastern Europe to bring home children with DS!


I've met a local family recently who is actually in the process of planning a trip to our figurative Holland! They have two young typical children already and now are preparing to adopt two children with DS. They 'get' it. They understand that adoption is a reflection of God's love for us. They understand what Christ said about 'the least of these.' They see beauty and worth in a child that the world considers defective. I'll be supporting them as I'm able. They are trusting the Lord to provide for this journey, so if you feel led to help out too...let me know and I'll put you in touch.

Can you see? In memory.

I was saddened last week to learn that my favorite little guy from Reece's Rainbow had been moved away from his baby orphanage and placed in a mental institution. Little Maxim is now in a very dangerous place. Many children who are transferred don't survive for long.

Sure, he has crossed eyes - totally fixable. Can you look beyond the eyes and see the little boy who wants to run and play? The little boy who deserves to know the love of a mommy and daddy? The little boy who is priceless not because he is perfect, but because he has intrinsic value as a human being?

Meredith has written a beautiful piece that explains Maxim's new reality. She wrote this in memory of two beautiful girls who, we learned yesterday, died in one of these institutions when the flu swept through.

While we were eating...
... they were hungry

While we were playing...
... they were restrained

While we were tucking our kids into bed...
... they were alone

While we turned up the heat...
... they laid in the icy cold

While we wrapped our children in blanket sleepers...
... they laid in their own excrement

While we sang songs and listened to music...
... they listened to the screams and cries of those around them

While we rocked our babies...
... they silently rocked themselves

While we hugged our kids...
... they scratched at their own faces and pulled their own hair for stimulation

While we cried over scraped knees...
... they moaned in their loneliness

While we brushed our daughters' beautiful hair...
... they had their heads shaven to stave off the lice

While we fought off the flu with love and nourishment...
... they got the flu and went Home.

No longer suffering... but so many more still are.


In memory of those that have never felt the love of a family, but
have passed away alone. Today we learned of the passing of these two girls in Eastern Europe.

Margarita

Katarina

Meet Wesley - Rexpennae

This is Robert Wesley Austin Nance, known to his family and friends as simply Wesley. He is the oldest of the (soon to be) nine Nance children.

Wesley is a prolific aspiring writer and future filmmaker. I'm so proud of him, mainly because he is growing up to be a caring, conscientious person. He cared for Ralph every morning last year so that I could continue to teach. They have developed quite a bond! Priceless.

Wesley would like to invite you to read his blog, Rexpennae, which means "king of the pen" in Latin. I believe that he is working on developing some new characters for one of the several books he is working on. His writings are dark and strange, on the fantastical side of reality. He was fortunate to meet several popular Christian Fantasy writers at last year's Colorado Christian Writer's Conference. They have encouraged him to keep writing and writing and writing!

Can you swallow this?

I'm not a fan of the so-called stimulus plan being hatched in D.C. this week. It's bad enough that we are going to be on the hook for trillions of dollars of pork spending and double the national debt, but there is a more sinister provision hidden therein. There are rules in the bill that are potentially hazardous to your health.

I learned about the health provisions slipped into the bill from an article by Betsy McCaughey at bloomberg.com. I STRONGLY URGE you to read it in it's entirety HERE. In a nutshell, the stimulus bill creates a new bureaucratic department designed to monitor the treatments your doctor is providing you in an effort to control costs and "guide" their decisions. This would seem to be the brain-child of one Tom Daschle who, in his writings, praises Europeans for being more willing to accept “hopeless diagnoses” and “forgo experimental treatments,” and he chastises Americans for expecting too much from the health-care system.

Does anyone else have a serious problem with this? I've had a busy day today and I've been thinking about this the whole time, trying to process it in my mind. I want to share this with you because I believe we are entering a frightening new era of government control over our everyday lives. Or is it new?

Solomon relates in Ecclesiastes 1:9 that "...there is nothing new under the sun." I want to thank Michelle for reminding me of this. Thank you, Michelle, for reminding me of the propaganda and scholarly thinking of the 1920's and 1930's that led to the involuntary euthanasia (i.e. murder) of those whose lives were not cost-effective.

Please read Michelle's well researched and written post and then try to put yourself in the shoes of a mother of a child who has already been written off by society as "less-than." Put your self in the shoes of a retired/elderly person (i.e. no longer contributing economically to society) who desires to pursue experimental cancer treatments in order to see their grandchildren grow up and be a part of their lives. Put yourself in someone else's shoes and see if you can swallow the fact that the government will be deciding what treatments are cost-effective and whose lives are worthy to receive them.

Those of you who are fantasizing of free nationalized/socialized health care beware..."free" may come at a very high price.

Phone day

It's my insurance/doctor office/hospital phone call day and my head is spinning. (It also could be the huge amount of snot packed in my head.) I seriously need a secretary or a manager or something! Barbara had a good idea for me the other day - go read your insurance policy. Novel idea! I'll bet it would cut down on the time I spend on the phone.

My pregnancy sonogram in November was charged to my individual deductable. I have another one scheduled for this Friday and I think I'm going to cancel. New year, new deductible. I guess it wouldn't be so bad if they would reimburse for my midwife, but no.

Two weird things - On Friday I picked up Ralph's Sildenafil, which normally costs $64 and change per month. They only charged me $30. I'm not one to complain, but I've been here before...someone screwed up and they are going to want me to make up the difference sometime down the line.

And today, while on the phone with the hospital to make a payment for Ralph's May '08 ICU adventure, I am told that he has a zero balance. So I call the insurance company to verify that what payments were made and when. Now I'm calling the hospital to see when the payments were received. It seems that I have been getting billed for the amount of the "discount" that was written off the original bill. Grrrr. Do I dig up the paperwork on this or just let it go? If I'm correct, they owe me about $200. (That's almost enough for a couple of tires for my van.)

Ralph is doing great, by the way! We've seen lots of improvement this week with balancing and walking skills. We are continuing to have him walk from one person to another. Typically he will take two steps and fall on his face. He thinks this is great fun! At church, he pushes a toy shopping cart, containing his O2 tank, around his sunday school room. Yesterday we had a luncheon after church, so he pushed the shopping cart down the halls and all around while we were gathering and chatting. He was adorable and SO enjoyed "talking" and waving to everyone in the halls.

Ralph visits the cardiologist later this month. I'm so curious to know what his pulmonary pressures are doing - improving, staying the same, or what! Funny thing, I've caught him trying to put the cannula BACK ON lately after he has ripped it off! But, I'm still longing for a day when we don't pack O2 tanks everywhere we go, when I don't get up 5-10 times every night to fix a cannula, when he can walk and run without tripping on tubing.

In the grand sceme, a little O2 isn't that big of a deal. I've got to remember to count our many great blessings, don't I? Ralph is one of them.

Husband Tag

I found this on Renee's blog and thought it looked like fun! If you do it too, let me know!

Husband Tag -

1. Where did you meet? At a bar in Hays, KS. Shocked??

2. How long did you date before you got married? Date, hmmm, don't know if I would call it that. About 15 months.

3. How long have you been married? 17 years.

4. What does he do that surprises you? Brings me candy.

5. What is your favorite feature of his? His great big hands.

6. What is your favorite quality of his? He has a rare kind of common-sense.

7. Does he have a nickname for you? Mama.

8. What is his favorite color? Blue.

9. What is his favorite food? Mexican

10. What is his favorite sport? Baseball

11. When and where was your first kiss? Undoubtedly the night we met in October 1990.

12. What is your favorite thing to do as a couple? See #13.

13. Do you have any children? Yes, eight... soon to be nine!

14. Does he have a hidden talent? He's really, REALLY good at Galaga. I put a link here for you young whipper-snappers.

15. How old is he? 38

16. Who said I love you first? I honestly don't remember!

17. What’s his favorite type of music? Country or classic rock.

18. What do you admire most about him? He works harder than anyone else I know.

19. Do you think he will read this? Of course!

Good news on the news?

This is the kind of acceptance we all want for our children with DS. If this doesn't make you smile, then you need to get a new heart! Enjoy...

Visit msnbc.com for Breaking News, World News, and News about the Economy

Special Exposure Wednesday

I was having a little fun with Ralph after oiling his scalp! By the way, olive oil is great for cradle cap!

Out of the mouths of babes...

Apparently the kids at school had their own presidential election this year. (Can you guess who won with the elementary crowd?) Even a 5 year old kindergarten girl couldn't escape the political mania of the past several months! It's kind of sad really. Shouldn't she be learning to read, playing house and legos and little kid stuff?

Today I took my little girl with me to the midwife. We had a chance to spend about an hour in the car together. We were listening to the radio when the news came on. Out of the blue she asked me if Obama was a good man or a bad man!

Hmmm. How do I respond? In my experience kids don't usually need as much information as we think they do. So I keep it simple. But honest.

I said. "I don't know, but I don't like some of the things he has done as president so far."

In a low serious voice, my daughter says to me, "I think I made a mistake voting for him."

I said, "I think a lot of people are feeling the very same way right now."

Better.

Ralph sounds much better this morning. I'll keep up the breathing treatments every 6 hours for now. I can not yet hear good movement of air in his lungs. He looks sick, too. He has the dark circles under his eyes, yet his blood oxygen levels are good. I'll have to wait and see.

I visited my midwife this morning. I'm 34 weeks and 1 day. Baby sounds good and measures perfect. Our plan is for the baby to be born at the Birth Inn! This is a little house that my midwife has set up for out of town guests and such. One room is a master bedroom sized birthing room, complete with a hot tub! I would prefer to be at home, but it is the next best thing. Kathy's concern is that our house is a little too far away from a hospital for her comfort. So we compromise.

I'll be having another ultrasound on Friday the 13th. Now, you all know that I'm NOT superstitious, right? We will get another real close look at this babe before she comes. Can't wait!

We have...

We have croup! Ughh.

Tonight I heard a little bark coming from Ralphie's room. James and I looked at each other and I said, "Did you hear that?" He has never sounded like that before.

When Ralph spent time in the hospital at Thanksgiving time, his cultures showed that he had a croup virus. He was never barking, though. And, he seemed to be feeling fine today. Weird.

On second thought, his appetite has been low. And I noticed teeny tiny white spots on his tongue today. I looked it up online and didn't find anything alarming, so I didn't call the doc or anything.

We had PT scheduled for tomorrow morning. I guess we will cancel. My goal for the week was to get Ralph into some SureSteps. Maybe next week!

God willing, this will not turn into anything serious. I'll be up again at 4am-ish for more breathing treatments.