Oh boy...

OK, I've typed this once and lost it once already.

I'm coming up on an incredible busy week. Tomorrow I head to Kansas City with Ralph and Ruby. Ralph has an appointment early Wednesday morning at the Children's Mercy Down Syndrome clinic. I BEGGED them for an early March appointment, because I knew. I knew what a tortuous day would be in store for me with a newborn and a two year old who doesn't walk yet.

So, I leave tomorrow and I'm still not sure how it's going to work. I've got major schedule conflicts to work out at home, too. I DO have a hotel room, though! I guess that is something!

If I live through that, Thursday is graduation rehearsal and ice cream social. Friday is decorate the graduation cake day and pick up the house day. My mom is staying here Saturday night. Saturday is graduation ceremony in the afternoon and the senior roast dinner at church in the evening.

Sunday is graduation party in the afternoon at our house. Consider yourself invited! Come and go from 3pm-6pm or so. A sweet neighbor lady has taken pity on me and is fixing the food! We'll have barbecue pork, coleslaw, baked beans, and cake. I still need to come up with the perfect graduation gift for my firstborn. (I'd better put that on the list for Friday)

I guess that would also be Mother's Day?! And Monday is daddy's birthday. There is something happening on Monday and Tuesday, but I can't quite remember...

Never thought I'd see the day...and other stuff

Going, going...

I never allowed myself to think about this day. Somethings are better off not considered. But, it's here and it's done! I called the evil home health company today and arranged for them to pick up all the oxygen tanks AND the oximeter. I'll miss the sound of clanging tanks, NOT!

Of course, they require doctor's orders to discontinue service. That only took a simple phone call to Ralph's fantastic, friendly cardiac NP. I wanted to keep the oximeter and a back-up tank of oxygen, just in case. But, she talked me out of it. I haven't been checking his levels much lately anyway. I'll go buy a cheap, portable oximeter if I find that I can't handle this loss of (imaginary) control. At least I get some additional square footage!

Wesley took another CLEP test today. And he passed! I knew he would, I'm so proud. What a frugal and effective way to earn college credit! All the preparation is his responsibility...true learning. I'm impressed with College Plus so far. Graduation is a week from Saturday. Senior Roast is that night at church. Graduation party is Sunday afternoon.

Ralph goes to the DS clinic at Children's Mercy next week. The appointment is at 8 am so I'll need to drive up the day before. I'll need to bring help in order to care for Ruby and Ralph at the same time. This is presenting a childcare challenge considering that daddy will be in Arkansas next week. I'll figure it out...after I freak out for a couple of days.

There are birds building a nest...in a wreath...on my front door!? These must be the stupidest, most ill-informed birds I've ever seen. Don't they experience my many children going in and out of the house and slamming the door each time? I'm baffled.

Miss Ruby is up 9 ounces from last Friday! She is a much happier baby now that I'm actually feeding her enough. This photo was from last Tuesday when she was looking a little thinner.


Today she looks a bit fuller in the face and is sleeping better, too!

Ramblin' catching-up

Life is so stinkin' busy around here right now! I feel like I'm just hanging on tight so I don't fall off the ride. Ruby is snoozing for the moment so I'll have to make this fast!

Thomas did well on his state assessments last week. It was three days, two tests per day. Thankfully dad was in town last week and was able to help me get him there and picked up several times. He was signed up for morning testing, but he had to leave early and come back in the afternoon one day so that we could attend a memorial service. Phew.

Yes, a memorial service. James aunt passed away on April 1. She was young, too young. Cancer sucks and then it sucks some more.

Wesley passed his first CLEP test last week. Thomas, Leroy, Ralph, Ruby and I dropped him off on Thursday afternoon and then went to Eastborough Park to kill a couple of hours. Leroy likes to harass the ducks there!

Chipper had his first track meet last week and it got rained out. :( He had another one today and then an orchestra concert tonight! Richy is also running track this Spring.

Oh joy! Summer rec baseball practice starts this week. I've gotten a few emails from coaches about practice times. It's always funny because the emails usually say "I'm your child's coach this year" and so I have to do a little research to figure out which of the children they are coaching! Five children, five different teams. Next year I'm going to offer them $20 ($50 even!) NOT to play baseball. I think my sanity is worth a couple hundred dollars, don't you?

Wesley's graduation is coming up! WOW! He is so incredible...really a treasure to me. We ordered some announcements today because tomorrow it the deadline to turn in announcements for the graduation ceremony scrapbook. That's me...last minute scrambling. Oh, also turned in a graduate info sheet to church today...2 days late. I know people understand my being lame, because I've been preoccupied with Ruby, but it still feels bad to be so lame!

Ralph had his appointment with the cardiologist today. I brought along a Signing Time video for him to watch during the echo. I thought he would be so mesmerized by it (like he is at home) that he would be still and good. Well...no. Of course today he wanted to show off all his signs! I had another bright idea to slip his socks on his hands during the EKG! He still managed to pull some wires off with his toes!

Ralph's test results were pretty good. He has been off of oxygen for a little more than a month. And, he is staying off of oxygen!!! His pulmonary pressures were only slightly higher than last time when he was still on oxygen. He is running at 35-40 mmHg. Not terrible. Now we are working on taking him off of some of his medications. After some blood tests this week, I'll know more.

One thing the doc said that bothered me...he mentioned Bosentan in passing. I'm pretty comfortable with the medications that Ralph is taking right now. I've been under the impression that his PH would be improving over time, but maybe I'm wrong. Bosentan scares me. It would be something to consider is Ralph gets worse...a lot worse. He is such a yummy little piece of sunshine! So, I can't think about that right now. If I do, I'll go crazy.

I'll leave you with a little sample of my sunshine:

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.

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!

My Wednesday

So, I totally blew off the MomDot Blog Party today. And, I don't even feel like writing right now, but I have to stay up for another half hour to give Ralph his medicine anyway. So here I go...

Ralph is so cool. Sometimes I just love staring at him, taking in all his coolness! He's been a bit difficult to feed lately. I'm trying to get him to eat table food. Baby food and Pediasure gets expensive after a while and he has a good set of teeth now. But he balks at anything that is not smooshy. He turns his head and he signs "all done."

I got tired of dealing with him last night so I just set a bowl of macaroni and a shrimp fork on his high chair tray. What do you know - that little booger cleaned it all up. He did really good with the fork! What he couldn't get with the fork he picked up with his hands. So now I know he's been holding out on me!

Notice the dog in the background? He loves it when I feed Ralph!

Thomas turned 9 this week. I wish I had time to scan some baby pics. He was SO chunky. And those eyes...I used to call him doll-eyes! He still has them doesn't he? Poor little guy had a fever that day. I wasn't going to force him to smile.

How do you like my 30 minute lion cake? Seems like I never take the time to do anything right these days. But he liked it and that is all that counts.

Today was my lunch at the tea room with my quilting friends. We do this occasionally and leave the kids at church with a sitter. I love to hang out with these gals. Some are moms, some are grandmas, and we have the most interesting conversations!

I get the itch to open a restaurant every time I eat at a tea room. The food was very great - my corned beef sandwich was REAL corned beef! But the service was a bit slow and they had to turn people away because the dining area was full. If they would convert some of their retail floorspace to a dining area and turn their tables a bit faster, OH what money could be made!!

Tonight, I shopped for Operation Christmas Child. I have such a hard time picking out things to go in the shoebox to be sent overseas. I'm always afraid I'll get something that is on the no-no list. I ended up getting a baby doll with a bottle, hair pretties, combs, a little satin purse, socks, stuffed mouse, a pink nubby ball, and twizzlers.

When I got home, the stuff didn't fit in the shoebox we picked out. So, I found a bigger box! We will drop this off at church tomorrow.

I also took Wesley shopping for a new coat tonight. I'm so glad he has a job now and buys his own stuff. It's hard to blow a lot of money on a coat when it is your OWN money! We went to the military surplus store. He found a great coat - long black with a furry lining - for only $18. They had a lot of really cool coats in the $150 range. I wonder how warm they are?

Tired.

Last week was exhausting. Now that I know Ralphie NEEDS his oxygen on all the time he has started ripping it off at night! I've been very thankful that he has worn a cannula for so long that it doesn't seem to bother him. Now it seems to bother him while he sleeps.

I reset his O2 meter to alarm at 93, so I can get him back above 95 ASAP. So now I'll bet I get up 15 times each night to put the cannula back on. Thank goodness James was home this weekend so I could catch a nap. He is taking Richard and Wes to North Carolina tomorrow for a week, so I'm sure I won't get another nap for awhile.

Tonight I'm going to try mittens on Ralphie. I've heard that other children are less likely to grab and pull things off when their hands are covered. I'll let you know how it goes.

On another note, Wesley got a job this week. He will start when he gets back from N.C. I was on my way to pick him up after his last interview when I noticed that he had started walking home. Then I noticed him fall down. Then I noticed him fall down again! He really hurt his ankle.

When we got home I could see a huge lump on his ankle, like a bone sticking out. I grabbed daddy's crutches, from when he broke his leg last fall, and we set out for the minor emergency office. I have to laugh every time I picture Wesley using his daddy's crutches. They are way too short, but it was better than nothing.

It turns out that the lump was just swelling and the ankle was not broken or dislocated. It was just a very bad sprain. Thank goodness.

Extreme Makeover

Wesley was invited to a friend's wedding today, so I thought he would like to look more presentable. We spent the morning shopping for some new duds and getting the Triple Play Haircut at Sport Clips. The change is remarkable! Just take a look-

Before

After










A little less hippy. A little more hip!

What the heck happened?

Our firstborn, Wesley, turned 17 today. We were only kids when he was born!

I see a lot of Ralphie in him, don't you? James did a double-take when he found this picture!

He was the most laid back baby ever. He LOVED his playpen and would play contentedly in it for hours. He had a knack for spinning fantastic lies stories at an early age to make sense of the world.

It seems like yesterday that we brought him home from the hospital, two months and three surgeries after he was born. He was the only full-term baby in the NICU.

More than a few people refer to Wesley as a "walking encyclopedia." He's been a voracious reader for many years. Now he is turning his natural talent for storytelling and his love of reading into a writing career. Check out http://www.rexpennae.com/ for a taste of his work. My little baby boy is suddenly a man.

Yeah, he still knows how to smile. You just have to be fast to catch it!