Friday, October 31, 2008

Whew!

It was quite a day here! Jordan had a field trip today, so we had to pack a sack lunch before the bus came. This kid is a snail. On a regular day it is a struggle to get to the bus on time. He also had a class party this afternoon, so the costume had to be sent to school in a bag. Last night he was not happy with his costume shirt, so I was worried that he might freak out on me this morning. Nope, he was very easy to get along with this morning and made the bus on time. Whew!

Next, I had to finish Rose's dress for her class party. Thank goodness that she goes in the afternoon. I still needed to hem the dress and I have never hemmed anything! It took me two hours and it doesn't look pretty, but it got done just in time to pack up for afternoon Kdg.

After she got on the bus I scrambled to get out of the house and do some last minute errands. We started at Goodwill. Wesley works there and was invited to a luncheon since that store won the store of the year award, or something. While he was eating, Ralph, Leroy, Thomas and I shopped. We found a shiny metallic tank top that looks like chainmail - great for playing dress-up. I also found a ladies size 4 suit coat that was perfect for Thomas' costume.

Next we hit the Walmart for drinking water and to look for a costume for Leroy. We found a couple of costumes for about $20, way too much. I wanted some vampire teeth, but they only had packs of 20. 20 vampire teeth?? Everything was picked over so I grabbed some pirate tattoos and the water and we left.

Next stop, Dillons. I love this place, mainly because they double coupons and mark down meat and produce. I also saw a cute costume the other day, but I didn't buy it because it was one of those shopping trips where I bought diapers, wipes and dog food. High dollar items! I left Wesley in the van with the baby, and Thomas. Leroy and I ran into the store on the off chance that the costume was still there. It was! Cheaper than the stuff at Walmart AND, 33% off!! We grabbed a couple of bags of candy just in case some kids knocked on our door tonight. The funny thing is that Leroy's costume fit him, but not the hat. I was perfect for Ralph, though!
Next we take Wesley for a haircut. He pays for his own haircuts now so he can choose where to go. I wait with Leroy, Thomas, and Ralph, who is getting really tired by now. Me, too. It is now 2:30pm and I need to get to the school to help Rose get into her dress. I promised.

We head for home after this. The traffic is heavy, very heavy. Of course, it is party day at the K-5 schools. Our whole little town is jam packed full of the cars of moms helping with Fall parties. I considered riding my bike up to the school, but I'm late. I'm late enough that the traffic had died down after I drop the kids off at home and get the baby down for his nap. Lucky me, my mother-in-law lives next door to the school so I park in her driveway. Otherwise I would have to walk 1/2 mile to find a parking space. Whew!

I brought Jordan and Rose home myself after the parties so they didn't have to take off their costumes for the bus ride. Rules. When we got home it was time to carve pumpkins. I delegated this to dad this year. He is normally out of town on Halloween, so it was great to have him around today. I broke out my old make-up kit and had a little fun with Thomas after the pumpkins were done.


By the time we ate a little dinner it was time for candy gathering. Dad and I took the four little kids, Thomas, Jordan, Leroy and Rose. Richard and Chipper stayed home with Ralph to hand out candy. Wesley had a date, so he wasn't around. That seems to be happening a lot lately.


What do you think of my pirates, Jack and Will? How about my cowboy and pioneer girl? Whew! I'm ready for bed.

It starts tomorrow!

Angel Tree

Extended by Overwhelming Poor Demand!!!

You may notice that the custom handbag chip-in has been extended by one week. Interest has not been as great as I had expected. It is understandable.



Many of my readers are already big fans of Reece's Rainbow and there are many raffles going on right now by families who will soon be traveling to bring home their new children! You could enter a raffle for a laptop computer, a Visa gift card, and TWO for a Wii, just to name a few. Some folks are just raffled out.



This is really not such a bad problem to have. This month alone, at least 18 new families have made commitments to adopt a child featured on Reece's Rainbow. There have been many homecomings as well. Praise GOD! Many of these children have been waiting for a very long time. Oleg is still waiting.


I've extended the chip-in for another week in the hopes that my friends would spread the word to people who may not know about Reece's Rainbow. Maybe you could skip a super-sized value meal or designer coffee this week and chip-in a 5-spot to a little boy with Down Syndrome who is facing a dismal future?



On a bright note, a sweet friend of mine has given me a check for $40 for Oleg's grant fund. So that would bring the chip-in total up to $115.



Also, exciting news - the Reece's Rainbow Angel Tree Project goes live tomorrow. Starting at midnight tonight the Reece's Rainbow prayer warriors will be praying over each Angel Tree child for the next 24 hours. I'll have more information about Angel Tree Project in the next few days.



My thought for the day (I'm meditating on this) - God does not always call the equipped, but He always equips the called!

Thursday, October 30, 2008

Bread Pigs

I have a habit of saving heels. You know, from loaves of bread. I probably learned this from my Gram. As a teen and young adult, I worked for her in her restaurant. She showed me how to make a couple hundred dollars out of a couple of chickens! We would save heels to use for croutons and breadcrumbs and bread dressing.

So, for years I have stuffed my freezer with heels from nearly every loaf of bread we use. Over the past year or so, I haven't had much time to cook yummy homemade dishes with my bread stash. The freezer was getting to be ridiculous. I almost posted a picture, but way too embarrassing. I'm all for keeping it real, but I have to draw the line somewhere!

The other day I was reading Christine's blog and found her bread pudding recipe. I started thinking it was time to introduce the kids to a old-fashioned dish and clean out the freezer at the same time. I actually made a dent in my bread stash! Christine's recipe didn't have cinnamon so I looked up some other recipes and ended up making up my own. It turned out pretty good.

Here is what I came up with:

Bread cubes - crusty and dry or stale
1 1/2 cup brown sugar
8 eggs
4 cups milk
2 tsp. vanilla
1 tsp. salt
2 tsp. cinnamon

I buttered my 12 x 18 cake pan generously. I filled it with the bread cubes and sprinkled the bread cubes with the brown sugar. I blended the remaining ingredients together with a hand mixer and poured over the bread cubes. I pushed down some of the floating bread so that none were dry. I baked at 350 until a knife came out clean, about 25 minutes. If your kids like raisins you could just toss them in with the bread cubes, I'll bet.

This was supposed to be dessert for dinner, but guess what? The house smelled so good when the kids got home from school that there was no way it was going to last. I was even going to get a picture of my pretty brown pan of bread pudding, but it was gone in a flash. Ralph even ate some. It was sweet enough that no sauce was needed. Rose told me, "We are all just bread pigs!" How true.

Wednesday, October 29, 2008

Bagels & a little laugh!





I finally found something that Ralph will feed himself! Lately, every bite size piece of food I give him goes flying. The dog appreciates this very much!

Got a piece stuck in my tooth!

Got one over here, too!

Tuesday, October 28, 2008

Dr. Visit

Ralph had his pediatrician visit today. I took Leroy with me just for kicks! When we pulled into the parking lot he said, "Oooh, I like this place! They have fish!" There is a nice fish tank in the waiting room. I noticed while waiting that his shoes were on the wrong feet, so I asked him who helped him get his shoes on. He said, "I put them on by myself. Are they on the wrong feet?" He's only 3 years old, but he realized what I had not said.

Dr. H was so pleased to see Ralph looking so big and healthy. He's up to the 5th percentile on the typical child's growth chart! She has seen him in very bad shape more than once so I know she is sincere. It's been over six months since he had any respiratory illness! Wow. Since he had the high fever on Saturday and Sunday, he has been doing OK. In fact, Monday he really bounced back and didn't even take a whisper of a nap. Doc said his throat looks fine today and whatever caused the fever has probably resolved.

Oh yeah! Before we left this morning I noticed that Rose was itching. I found some round red bumps on her shoulder. Chicken pox? There were no blisters yet, so how do I know?

I told Dr. H about this when we started discussing immunizations. Her recommendation was to give Ralph the Chicken Pox shot today in the hopes that IF he was exposed then he may not get sick at all or have a very mild case. He got one other shot today, too. He was MAD! Poor thing. I gave him some pain medicine when we got home.

Dr. H did some checking for us today and found out that another doc in the office was ordering some mercury-free flu vaccine. Now I don't have to call around trying to track it down. I know a lady nearby who drove an hour to get her children the mercury-free version. I'm glad I don't have to do that now.

ALSO, she wants Ralph to get the Synagis shots again this year. This protects against RSV, a common cold virus that can be devastating to premature babies and babies with lung disease. Great. But what about the $300-400 co-pay PER MONTH? Now is when I am kicking myself for not applying for a medicaid waiver. This can act like secondary insurance for disabled people who don't qualify for medicaid or SSI and would be nice to have right about now. I'm just unsure about getting the gov't involved in our lives in this way. I have a month to decide.

Monday, October 27, 2008

Liberty

She was born the day that Ralph was airlifted to Children's Mercy Hospital. She was Ralph's roommate for a while in the ECMO room. She was a little small, born a little early. She was a beauty.

I was certain that she would be going home well before we could even consider taking Ralph home. She did not appear to be nearly as sick. I was wrong. I'm not used to being wrong, but I have been dropped in a world that no longer makes sense all the time. A world where logic and knowledge sometimes fail.

God never fails.

Today it has been one year since Liberty went to live with her Heavenly Father. Here is a video made in her memory - http://www.youtube.com/watch?v=CVf6MChnC9g.

Sunday, October 26, 2008

Sick

Ralph is sick. This has happened before...we have a good visit at the cardiologist and the next day or two Ralph is under the weather.

I had just swept the kitchen and dining room and getting ready to mop yesterday morning when I noticed that he was not acting right. He was just sitting and crying. He was shivering, too. I spent the next two hours on the couch snuggling with a feverish baby. He is not normally a snugly child so I was sort of enjoying this!

He has had a fever off and on today also. The good news is that his O2 sats are good and his lungs sound good to me. We have an appointment with his pediatrician this week. I hope we can wait until then.

Friday, October 24, 2008

Good news

Today was cardiologist day for Ralph! We had an early appointment so the morning was crazy with getting everyone dressed and off to school. We made it, barely!

I was by myself with Ralph today. Since I was carrying a purse, diaper bag, oxygen tank and a 22 pound child, I had to ask the receptionist to sign in for me! We didn't have to wait too long in the waiting room. That was good because the virtual fish tank that Ralph likes so much is actually a TV and was on CNN. I'm so sick of the news that we sat somewhere else.

First thing is to strip down for the weigh in. 22 pounds 5 ounces. Not bad, but not quite as much as I thought he would be. Next the nurses get blood pressure and O2 levels. Ralph hates this part and is always very naughty, pulling on the cuff and rolling around like an alligator. His O2 levels were only 92%...baffling to me at the time. (Later, when we got home I found a kink in the oxygen tubing.)

Then comes the EKG!! The nurse attaches many electrode stickers to his chest and then clips wires to them with alligator clips. (I can't believe I have used the word alligator twice!) Ralph has to stay very still for about 60-90 seconds to get a good reading. Ha! He uses fingers and toes and whatever to pull off wires. He rolls some more. One nurse starts to blow bubbles to get his attention, then he lunges off my lap to grab them out of the air. Another nurse begins to sing Itsy Bitsy Spider. If it sounds like a circus, then you are getting the picture. We get a good reading eventually, but I'm beat and we still have the echo to look forward to.

It seems like forever that we wait for the echo tech to come get us. I ran out of the house without grabbing any toys, so we play peek-a-boo with the dressing curtain and mirror. Our echo tech is the bees knees! The guy knows how to deal with children. He had a Sesame Street music video playing before we even got to the room. Ralph starts out sitting up with the tech reaching around him! But Ralph couldn't decide what was more interesting, the video or the echo display! So we laid him down and he watched the video like a nice boy for the rest of the test. This is the first time that he has been through an echo without downing at least one bottle. Normally it is the only way to keep him quiet and still.

We head back to the exam room and wait for the doc to review the echo and visit with us. We wait. And wait. Seemed like forever. I could easily nod off if I weren't wrestling with Ralph. The doctor comes in very upbeat and energetic and it takes me a minute for me to wake up enough to pay attention.

So...the echo looked good! His heart size is normal and his pressures are about the same as last time, 30's I think. This is higher than normal, but not scary. He said that the EKG was still abnormal. What? We never discussed this before, but apparently right heart trouble shows up on the EKG. He said that the EKG results are the last to improve. OK, I'll take this.

So we are scheduled to go back in 4 months! Wow! Don't you just love good news?

Thursday, October 23, 2008

Pondering rainbows...really boring.

Richard has strict instructions to never let me leave the house without a camera. Of course, the only time I see anything extraordinary is when I don't have a camera on me! He said I could get a cell phone with a camera. Funny kid...I gave up carrying a cell phone about 6 months ago and I'm sure I'm a huge embarrassment to him!



So, tonight while I was driving my son up to Tabor College I saw the most incredible rainbow. I'm not old, but I've seen a few rainbows in my day! NEVER have I seen such a rainbow. It was short and fat and blindingly bright! I don't have the words to explain how bright and vivid this rainbow was. This photo is similar to what I saw. Isn't it bright?



As we were driving, we could see the spot on the ground where the rainbow ended. Sometimes we could look through it and see the trees and fields. And then a moment later the rainbow was obviously behind the trees instead of in front. THEN another rainbow appeared, a pale imitation of the first one, but still bright enough for me to notice that the colors are reversed! Have you ever noticed this?



Sorry if this is a little geeky...I'm kind of a science girl! So I've been researching the scientific explanations of double rainbows tonight - after baking cookies for Jordan's class! I've also been thinking about the first rainbow and God's promises. Oh, I almost forgot that I listened to Chip Ingram on the way home. He was talking about how we used to BE darkness and now we ARE light. And, I'm thinking about Reece's Rainbow, too. I'm just pondering these things tonight.

Wednesday, October 22, 2008

Special Exposure Wednesday

Ralph got a present this morning. His PT and the kids worked hard to get it ready.YAY!! Ralph has a new trike!
Check out these modifications...that is a lot of foam!
Now we can take walks together.

Grow, Ralph grow! Then we can remove some blocks.

Tuesday, October 21, 2008

OK, so I missed Sunday and Monday and I've messed up the 31 for 21 challenge. I'm just going to start fresh today and press on just like I do in real life!

Some odds and ends today...

Ralph is doing well on 1/4 liter of oxygen. He visits the cardiologist Friday, so I hope to know for sure then.

Richard does not need a cast for his stress fractures. In fact, he is beginning to put a tiny bit of weight on his bad leg while still on crutches. YAY!

Sometimes Leroy is so bright and funny. Today we went shopping at Lowe's. When we parked, he asked me if this place was the "hard work Walmart." I love the way he makes sense of the world!

Don't forget about Oleg! His fundraiser ends next week and I'm giving away such a nice prize. Oleg really needs a family to find him quickly and his grant fund will be a great incentive.

Saturday, October 18, 2008

Bathtime

The weather has been so nice lately that the kids play outside all day long. I call them in for lunch and I call them in for dinner and I call them in for bedtime. They come in smelling like fresh dirt! Perfect for deer hunting, not so good for clean bedsheets!



We did the assembly line bedtime bath tonight. First Rose gets in and we wash her hair. Then I put Leroy in and go check on Ralph. Rose gets out, Jordan gets in. I wash Leroy's hair and then check on baby again, he is in his highchair in the kitchen with Thomas. Transfer Ralph to the bathroom in a locked baby walker. He is getting excited because he knows he's going to get in, too!

While Jordan washes his hair, I blow-dry Rose so she doesn't look fuzzy in the morning. Leroy gets out and Thomas gets in. We add warm water to the chilly bath water. Thomas washes his hair while I get the other two into PJ's. Now it is Ralph's turn!

It's his first bath with brothers! The three boys play with squirty ducks that they got at the buddy walk. I wash Ralph's hair and let him play awhile longer. He is the next one out, because he is getting crazy and won't sit still. Jordan gets out next. Thomas is out last and gets to clean up the toys and washcloths.

I'm beat by now! But, I make some old-fashioned pop-it-in-the-pan popcorn and send them off to bed. I've got all the laundry done, so dressing for church in the morning should be a snap, right?

Friday, October 17, 2008

Ralph's progress

Ralph will be 18 months old this month. I was hoping that he would be walking by now, but he isn't showing a whole lot of interest. He crawls like lightening though!

I like the way he pretends to sign when the Signing Time videos we borrowed are playing. He even has a couple of new signs: milk, and "all done."

It is hard for me to judge how he is doing speech-wise. Every now and then we will hear him say a name or something, but he is not consistent with that. He does, however, say thank you almost every time I give him his milk! Cool, huh? Bye-bye, nite-nite, dog and dad all sound the same - DA! I need to have his speech evaluated soon.

On another note, I think I coming down with a migraine tonight. I just don't feel right. At least dad is home tonight!

Thursday, October 16, 2008

"Victimized" by a RAK

Today I was shopping for jeans for Rose. She really only wants to wear dresses to school, but today she has a field trip to the pumpkin patch and I think a dress would not be appropriate. Plus, it is starting to get very chilly here and she will need pants soon anyway.


First stop, Goodwill. It is the closest place to shop for clothes anyway. The pant were really picked over, nothing in a size 7 or 6x. We did find some cute overalls with ribbons and embroidery on them. They were a bit big, but only $1.99 so we bought two pair.


OK, now it is 11:20 and the bus comes at 12:30. We still don't have jeans. Next stop, Target. We found the cutest boot-cut jeans in a 6x and they fit perfectly! I grabbed a long sleeve top also and we headed for the checkout.


The lady in front of us was buying 7 plastic pumpkin buckets and a boatload of candy. Rose and Leroy (yeah I took him with us, too) started going bonkers! "When are we going to buy Halloween candy? Are you going to make us give out our parade candy?"


"No, I was just joking about that!" The kids got so much candy from the Fall Festival parade last Saturday that I told them we had enough to give out on Halloween.


The lady in front of us quickly handed me a Target gift card and said, "God bless." Then she disappeared. (not literally) So, was it my kids begging for candy or was it that I looked like I slept under a bridge. I wasn't planning to go anywhere today, so no makeup or anything? Or, was I simply the victim of a "random act of kindness?" $30! hmmmm.

By the way, today Ralph discovered the joys of playing under the table! He dragged my shoes with him. How fun! I should pin a swiffer cloth to his butt!

Tuesday, October 14, 2008

Special Exposure Wednesday - Tale of Two Boys















Two boys. Oleg on the left. Ralph on the right. Very similar, and at the same time, very different.

Both little boys are creations of a loving God, made in His image to accomplish His purpose. Both boys have Down Syndrome. Both of these little boys have dreams and potential. Both of these little boys have captured my heart.

One little boy lives in a wealthy country with opportunities for people with intellectual disabilities, one does not. One little boy has access to quality medical care and adequate nutrition, one does not. One little boy has a loving mommy and daddy, one does not. One little boy almost 18 months old, one is nearly 4! The one is a bit small for his age, one appears to be quite tiny.

One little boy is about to be shut away in a mental institution for the rest of his life.

Will you join me in praying for Oleg and the countless children like him all over the world, children facing a dark and uncertain future? Will you consider whether God is leading you to adopt one of His children and rescue them from that dark future?

Not everyone is led to adopt, but will you consider supporting someone who is? There are many families in the process of raising money to rescue a child like Oleg. Visit http://www.reecesrainbow.com/ to find out more. Chip in for Oleg, if you can. If you cannot, do something even better, pray - and God bless you.

Little bitty ears

Ralph has failed several hearing tests over the past year. I was recently advised to take him to an ENT - Ear Nose & Throat doctor. I don't know why I was resistant to this. After all, many children with Down Syndrome battle ear infections, need tubes in their ears, need their tonsills and adenoids removed, and so on.

Ralph has never had an ear infection, though. And, I think he hears fine. But, what if there is some subtle loss that might affect his speech development? One of the things I want for Ralph is clear and understandable speech. I think that poor speech may hold our dear children with DS back more than anything.

So we went. To the ENT. Today. What a waste of time. I found out the Ralph has very unusually small ear canals. I found out that they are very hairy, too! So the doc looked in his ears and didn't see anything out of the ordinary. He wants him to have a speech evaluation or a sedated hearing test.

After wrestling with Ralph so the doc could look in his ears, I stood, still wresting, while he sat and talked. I found it very difficult to pay attention while fighting with Ralph. At this point the doc sounded like the teacher from Charlie Brown, wah-wah wah wah-wah-wah. Shouldn't this guy at least have looked at his nose and throat, too? I mean he is an ENT, not just an E.

Of course, I just thought of this now. Six hours later. Sometimes I feel so inadequate.

Monday, October 13, 2008

You know you are tired when...

You fall asleep just as soon as your head hits the...crib mattress! Ralph played hard today and it shows.

Jordan's birthday is today! My handsome little man is 7 now. He is the pokiest of children. Today he missed the school bus, again. I was late for a meeting so I had to drop him at the corner by his school...and it was raining. Poor thing.
Jordan has the most amazing green eyes. He's a real heart breaker! The birthday boy got a bubble bath all to himself in mommy's tub.

Sunday, October 12, 2008

Buddy Walk 2008

People, all kinds of people, are drawn to Ralph. He makes people happy, even strangers in the grocery store!

I just got this picture by email. I was so concerned about the cookies that I was supposed to bring to the Buddy Walk that I walked off without my camera! I'm very thankful for good friends and friendly strangers who were willing to send me some photos from that day.

Saturday, October 11, 2008

Fun on the trampoline with Ralph

We had some fun on the trampoline this morning. I thought this would be a great time to try out the video capabilities of Richard's camera. It was VERY windy today, but if you can ignore the wind noise you'll hear Ralph laughing. Seriously, it sounds like we are in the middle of a tornado!

video

Gunther wants to jump, too! He insists on being outside whenever the kids are jumping.


Friday, October 10, 2008

October Raffle One-of-a-kind custom handbag!

Do you remember Oleg? If not, then read this: http://ralphcrew.blogspot.com/2008/09/let-me-introduce-you.html He needs his new mommy and daddy to find him soon!
This October raffle is very special to me and will help build up Oleg's adoption grant fund! My friend, Michelle, has a company called Sassy Klassy 'n' More which makes wonderful, high quality handbags. The winner of my October raffle will get to create their own photo bag. With Michelle's expert assistance you will choose your own photo in black & white, color or sepia, choose coordinating fabrics, and any other customization you would like. This is over $100 in value!

Isn't this a darling bag in sepia? The photo has been transferred into the fabric! Take my word, this looks fantastic close-up and in person. Hmmm...I'm thinking this would be a great Christmas present for any grandma.Here is another example in color:

For even more examples of photo bags and available fabrics check out the Sassy Klassy website: http://www.sassyklassy.com/.






If you contribute to the chip-in AND post about the raffle on your blog I will give you an extra entry for every $5 you contribute. So, a $10 contribution plus a post on your blog gives you 12 entries. $5 by itself gets 5 entries. Get it?

Use Mr. Linky if you post on your blog don't forget to leave a comment for me here. The contest ends on October 31 and the winner will be announced November 1. Thank you and good luck!

UPDATE - The raffle has been extended to November 7. Good luck!







Thursday, October 9, 2008

Babies with Down Syndrome

I was chatting with a friend yesterday who said she thinks that babies with Down Syndrome are the cutest babies of all! I think that she is right. We both have children with DS, so I guess we are not completely objective.





Ok, this is an old picture, but one of my faves. Go on, tell me this kid isn't a beauty. I love his sweet almond shaped eyes. His eyes are a deep brown so he does not have any Brushfield spots like the girl in this picture. Brushfield spots are white flecks around the iris and are a physical characteristic of DS.

Another physical trait associated with DS is a nuchal fold, a thicker than usual area of skin and fatty tissue on the back of the neck. Ralph has this and it is the sweetest, yummiest place to nibble and kiss. I love it.

For more terms and definitions check out Kimberlee Kadar-Kallen's article here. According to Kimberlee, "it has been discovered that cuteness is located on the 21 st chromosome." Amen.

Wednesday, October 8, 2008

Special Exposure - Signing

This is Ralph watching Signing Time. By the way, Signing Time videos are the BEST EVER! His facial expression never changes, but his hands are never still while the video is playing! He begins his pretend signing as soon as the music starts. I wish I could get it on video.

Tuesday, October 7, 2008

Changes?

A large percentage of babies with Down Syndrome are born completely healthy. Many are born with heart defects and other problems that are easily repaired. In a few cases the problems are serious. In Ralph's case, pulmonary hypertension makes DS look like a walk in the park.

Ralph has been pulling off his oxygen at night and when his blood oxygen levels fall his O2 alarm goes off. Nothing really new about this! I've been getting up countless times at night to fix the cannula for many, many months. Some days I wonder if I will ever get a full night sleep again!

Lately things seem to be changing. The alarm is going off less and less often. Even with the cannula off his O2 levels are not falling enough to set off the alarm! During the day, Ralph likes to take the cannula off and chew on it. Of course, I can't monitor his O2 levels during the day, because the meter just doesn't work when he is up and moving around.

So...do these changes mean that his pulmonary hypertension is resolving?

I talked to Ralph's cardiologist's P.A. today and we have a plan. Since he has an echo scheduled for later this month I will cut his liter flow in half, from 1/2 liter to 1/4, for the next couple of weeks. We will then see how the pulmonary pressures look on the echo. As I know from experience, blood oxygen levels don't always tell the whole story where PH is concerned. But, I'm still optimistic that Ralph's lungs are growing and remodeling and his PH may eventually be nothing but a bad memory.

Monday, October 6, 2008

Blogoversary?

Well, Renee is having one at Life With My Special Ks. AND she is giving away some cool gift baskets. Check it out!

'tis the Season

A biotech company called me the other day. They wanted to make certain that they have current insurance information for Ralph. You see, cold and flu season is fast approaching. Ralph's pediatrician wants him to have monthly Synagis shots again this year.

Synagis protects against RSV, a respiratory virus that can cause life-threatening illness in premature babies and those with lung disease. The series of monthly shots begins in October and ends in March or April. The good news is that our insurance will normally cover Synagis if the doctor writes a letter stating that it is medically necessary. The bad news is that the co-pay is $250 per month, at least it was last year. Probably more this year because Ralph is bigger. We only managed two shots last year.

Ralph DID end up in the hospital with a respiratory virus last year, but it wasn't RSV, it was adenovirus. I'm not sure what to do this year. Ralph seems to be so much stronger and healthier than ever before. But, babies and children with Down Syndrome are especially vulnerable to respiratory viruses. Is spending $250 each month to protect against ONE virus a wise move?

Oh, and the flu shot...what to do?

Sunday, October 5, 2008

New Old Friends

Last year at a local DS Society meeting a woman came up said, "Stephanie?" Yes! It turns out that we went to school and graduated together 20 years ago in a little town 3 hours away from here. I guess I haven't changed much because she recognized me right away. Her little boy is 4 months younger than Ralph and is a cute little butterball!

My friend and her husband and 2 little boys came to town this weekend for the Buddy Walk. We were privileged that they joined up for church this morning. They even took our larger than average family out for lunch! The two babies sat side by side in their high chairs and studied one another. So cute!

So, is it a coincidence that this girl I went to school with has a baby with DS about the same age as Ralph? Is it a coincidence that we bumped into one another? I don't believe in coincidence! We were meant to have babies with DS. We were meant to be friends. Life is really rich!

Saturday, October 4, 2008

A beautiful day - not just the weather.

Today was the DSSW Buddy Walk. That is the Down Syndrome Society of Wichita. The weather was a bit breezy but comfortably warm and sunny. For my children this is the highlight of the year! There were well over 1,000 people registered this year, the 5th year of the Buddy Walk here.

Yesterday we all took a road trip to my hometown for the homecoming parade and to visit family. We had to make a detour to deer camp on the way home so we didn't get home until 11pm last night. I committed to bringing 5 dozen cookies for the buddy walk. They didn't get baked yesterday. They didn't get baked last night. They got baked this morning! I'm sure they were still warm when we arrived at the walk!

I was so worried about getting the cookies done that I forgot to grab the camera on the way out of the house. I'm very thankful for the friends we met at the walk who agreed to email us some pictures. The DSSW makes signs out of pictures of our children to place along the one mile course. We all had our picture taken next to Ralph's sign. Brian and Kellie from KFDI were there as emcee's and handed out the medals to the children with DS. I thanked them for being there. They seemed to be genuinely humbled and pleased to be there, in fact I think I heard Brian's voice crack just a bit. Good people.

After the walk, the kids played carnival games until the lunch line got a little shorter. I'm not one for waiting in a long line with kids who would rather be playing! All the little kids got tattoos, including Ralph. Somehow Rose wandered off and went through the lunch line on her own. I wonder how she managed this.

Leroy, Rose, Jordan and Thomas each went home with a bag full of prizes, little toys and trinkets. They all said that the games were the best part of the day. But I say, that the very best part of the day was watching all the kids (kids of all ages I should add) play together. There was an authentic atmoshpere of acceptance and respect. I wish you could all experience this. It was a beautiful day.

Friday, October 3, 2008

I dare you!

Get It Down; 31 for 21

My son Ralph is amazing and Down Syndrome is just another part of who he is. As a result, I've developed a rather large soft spot for children with DS. It is sad that 90% of babies diagnosed pre-natally with DS are aborted. But did you know that that babies born with DS are routinely abandoned and institutionalized in many counties around the world? There is no future for these children, unless...

There is an organization that is committed to changing hearts and minds about people with Down Syndrome around the world. It starts with proving the beauty and worth of babies and children with DS through international adoption. It continues with developing special education and parental support opportunities around the world. If services and support are available, parents won't feel compelled to give up their disabled children.

RR 31 for 21

In honor of Down syndrome awareness month in October, this organization, Reece's Rainbow, along with many in the blogging community commit to post once each day about Down syndrome awareness. Reece's Rainbow with be posting a DIFFERENT AVAILABLE CHILD each day this month for 31 days! That's 31 different children that will be here for you to see, pray for, and share!

Click on the button above to see all the beautiful children featured this month. I dare you!

Thursday, October 2, 2008

Ralph

Within minutes after Ralph was born the midwife said, "I think your son may have Down Syndrome." He was having difficulty breathing, so this didn't seem terribly important at the time. However, James and I have known people with Down Syndrome and we were totally OK with it right from the start. We had faith that our sovereign God placed him in our family by design.

We have had more heartache than I can describe in the past 17 months since Ralph's birth. I've seen him overdosed. I've seen him crash more than once. And as terrible as the difficult times are, nothing outweighs the joy that he has brought to our family.

Here he is at one month of age.

And again, one year later.

I often wonder what my pregnancy with Ralph would have been like if I had a pre-natal diagnosis. Would we have been encouraged to abort? Would we have been devastated? Would we have worried? I don't know.
I do know that 90% of women with a pre-natal diagnosis of Down Syndrome abort their babies. In my opinion there is a poverty of thinking in this. Must we make it through our lives without difficulty and pain to be fulfilled? We end up sacrificing authentic joy and meaningful life lessons. I could go on, but not today.

I've heard many wonderful things about people with Down Syndrome - they are so happy, they are angels and so on. These are generalizations. I'm certain there are elements of truth in these sayings but above all people with Down Syndrome are individuals with unique gifts, talents, hopes and dreams.
I'm so very thankful that Ralph is a part of our family. I am just getting to know him, but here is my take: He has taught our family all about acceptance of people with and without disabilities. He holds no grudges. He knows how to celebrate. He loves without fear. He takes his time. He makes people happy. He is so many things that I wish to be.

Wednesday, October 1, 2008

Rose and DS Awareness Month












She has her own sense of style - dig those tights! She was sitting with me as I was reading the blogs on my list today and she noticed the Ban the 'R' word button. She got a little bent out of shape about this since her name starts with R. I tried to explain, but she is still not happy about it!



Get It Down; 31 for 21



I'm so happy that it is now October - the best month of the year! I love the cool crisp mornings and the warm sunny afternoons. October is also Down Syndrome awareness month. I am accepting a challenge to blog everyday for the month of October to raise awareness of Down syndrome (a.k.a. Trisomy 21). The challenge is called 31 for 21! So check back each day to see if I am still on the wagon.