Today is not the day.

Ralph is looking much better today. He is awake and playing with daddy right now. Yesterday he slept all day...very strange for him.

I was very concerned about his nose yesterday. I could tell by the sound that he was mouth breathing. I couldn't tell if his nose was stuffed, or irritated and puffed up. I doesn't matter how much oxygen you push through a cannula if the poor kid can't breathe through his nose. I could feel and hear the air going in and coming right back out of his nose.

This morning Ralph was a mess after his nosebleed last night. I asked the Resp. Tech to leave me some saline and help me clean his nose up. She didn't have much luck. A bit later I tried to suction him again and I pulled some huge clots out of both sides of his nose. Since then I've been able to go down to 2 liters of oxygen! Yay! I think I could go down some more, but he is so active that the sat probe doesn't get good readings.

Ralph is not going home today, though. The docs are being extra cautious, considering how sick he got last year. Today they are going to do some snot cultures and give Atrovent with his breathing treatments. Maybe tomorrow?

Looking up

Ralph has a nosebleed, but is looking a bit better than earlier. He is still on 3.5 liters of oxygen but now his sats are consistently in the 90's. His breathing treatments are now every 2 hours. Seems to be working.

On a side note, why do I have to hunt down a nurse to give 11pm meds at 12:45? This kind of thing drives me nuts. What part of 'every 8 hours' don't people understand? Our nurses have all been very capable and kind, but this happens every day. It would be so much easier if they would just let me draw and administer his home meds. Grrr.

And, by the way, these pillows suck.

Saturday morning with Ralph

I'm just sitting here in Ralph's room watching him and watching the monitors. I like the quiet so I keep the TV turned off. I've had to bump up his oxygen to 3.5 liters to keep him above 90%. It's kind of disappointing and I don't know what is going on. Maybe the gunk in his lungs is breaking up? Maybe he is just sleeping very deeply?

OK...I just found a bottle on the floor. I remember the nurse giving him his meds in a bottle of milk this morning. I don't remember hearing a bottle hit the floor. Could it be that he didn't get all his medicine? She said she was giving potassium and lasix but she didn't say anything about his Sildenafil. Hmmm. I must be off my game. I usually watch the medication schedule like a hawk.

No news is...not good

Sorry I've been MIA for the past week! Right now I'm up at the hospital with Ralph. I brought him to the ER on Thursday night because I couldn't keep his O2 levels up. He was running about 83 at 2 liters.

We spent Thanksgiving Day in Tulsa with my family. Ralph spent the day sleeping on the floor. That is quite uncharacteristic. He has been on antibiotics and breathing treatments since last Sunday. I would not have taken him on a trip if I thought he was not getting better.

We spent last night and all day today in the PICU. Ralph needed 5 liters of oxygen to keep his sat levels up. He has steadily improved all day and has weaned down to 1 liter. I'm guessing we will go home tomorrow. Normally our trips to the PICU are disastrous. This time is a nice change. Thank God.

Well...I guess it wouldn't be a holiday without a hospital visit.

I'm humbled and I have great news!!

Melissa, a new blogging friend that I met over at MomDot.com, has given me an award! You should check out her blog here:

I am especially honored for two reasons: This is my first ever blog award and this is an award from a lady, whom I just "met" online. We may have just met, but we have at least one thing in common - we have a heart for "the least of these" She has a son with special needs like I do and she enjoys volunteering and visiting at an assisted living establishment. She makes the sweetest comments on my blog! I'm proud to have introduced her to Reece's Rainbow International Down Syndrome Orphan Ministry.

Thank you Melissa! I'm so glad to "cyber-meet" you and the award means a lot to me.

Here are the guidelines for receiving this award:
1. Put the logo on your blog
2. Add a link to the person who awarded you
3. Nominate 10 other blogs for this award
4. Add links to those blogs
5. Leave a message for your nominees on their blogs
6. Give a reason why you consider their blogs cool

Okay, here goes to pass on the bloggy love. There is one new blog I am giving this award to. I met her last year at kindergarten! Her daughter and my son were in the same class. She, and her partners, make incredible hand crafted handbags. I gave away one of her beautiful photo bags as the prize in my October fundraiser for Oleg. I was pleased to assist them in rolling out a new website this year - www.sassyklassy.com. Check out her new website and her blog,.

And, for the rest of my recipients:

Shelly is an incredible lady. She and her husband have adopted 2 children with Down Syndrome over the past 2 years and she always has something worthwhile to say here.

Tammy has a cute little boy named Parker. I found them during one of my marathon pulmonary hypertension research sessions. Their blog is inspiring.

I really like Christine for who she is. Her blog is cool because of the way she shares about her family and her life. Check it out here.

Lou and her husband are incredible. They are preparing to travel to adopt a beautiful girl who needs immediate medical attention. I follow their blog religiously and pray that they can get her home in time.

Kansas Milkmaid is probably the first blog I ever read. I used to get fresh raw farm milk from this lady. She always has something interesting to share about farm life, homeschooling, and her relationship with Christ.

I love to read Meredith's blog daily. She has 4 very young children, 3 of which have Down Syndrome. She also administrates the Reece's Rainbow blog here. Busy lady, no?

So what is the great news? I got the word last night that a family has committed to adopting Oleg!!!! No, it's not us. But here is the cool thing...this same family, the Spencer's, have also committed to Pavel!!

If you've never seen the pictures of these two little boys on the Reece's Rainbow website, let me tell you how stinkin' cute they are! So now they will become brothers...how sweet is that? Both boys were at risk of being sent to a mental institution in the coming months. One more thing to be thankful for this week.

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?

MomDot Blog Party Day 5

DAY FIVE QUESTION

Today, make a blog post about what you do to give back during the holidays. Do you volunteer your time? If so, please tell us where. What do you do to teach your children the true meaning of the holidays?

This is Oleg! Isn't he darling?

I'm so pleased to answer the day 5 question! The Christmas season is a great time to think and act on behalf of others. The spirits of thankfulness and giving are inseparable. Although the need is great all year long, we make a special effort to give during this season. Normally we give through our church's angel tree ministry.

Our church has an angel tree decorated with colored paper stars. Each different color represents a different local organization. Some orgs, like the children's home, need people to volunteer in person to wrap gifts and accept and sort donations. Some ask you to sponsor a family by buying presents and food for the whole family. Some ask for specific gifts for a specific child or adult, usually a toy or clothing.

In years past, we have teamed up with another family to sponsor a family and provide gifts and food for their Christmas. I happen to know that this WAS their entire Christmas, giftwise anyway. We have also participated in the Operation Christmas Child where we load a shoebox full of assorted items for a young boy or girl. It's always fun AND instructive to take the children shopping for some mysterious child across the ocean, perhaps. It starts them off wondering about the way that other children around the world live. It is the beginning of compassion.

This year will be a bit different for us. I have fallen in love with children with Down Syndrome. Yes, all of them!! It saddens and crushes me that the world does not see their beauty and worth. In the United States somewhere near 90% of prenatally diagnosed babies are aborted. In other countries, babies with DS, and other imperfections, are routinely institutionalized. Many don't survive past childhood. As the mother of a medically fragile 18 month old child with DS, I'm well aware that he probably wouldn't have survived his first year had he been born in Eastern Europe.

There IS an organization that is changing things for the better! Through Reece's Rainbow, the international adoption of children with DS is showing the world that they are worthy of love, learning, and a family - simply because they are human. Do you know that many of the institutionalized children have no baby pictures? The caregivers are so certain that no one wants to adopt them that they don't even bother taking them!!

Supporting Reece's Rainbow is the way we are giving this year. They have an Angel Tree Project where you receive a beautiful Christmas tree ornament with a gift of $35 or more. There are about 100 waiting children pictured in the gallery of angels. Please take a few moments to look at these beautiful faces. Most are living in baby homes right now, but the children whose names are in red letters are facing transfer to a mental institution very soon.

Oleg, who is pictured at the top of this post, is my special little boy! I just love him. He is nearly 4 years old and will be sent to an institution next year. UNLESS...a family were to commit to adopting him! I've been raising funds for his adoption fund for the past few months. When a family commits to adopt him, the money in his fund will help offset the huge financial burden.

Will you join me in praying for Oleg and the family that God is preparing to adopt him? Will you consider a small gift to an angel on the Reece's Rainbow angel tree? Due to the sluggish economy, I guess, this annual fundraiser is off to a slow start.

When my children and I look at the faces of orphans from around the world, we better understand the meaning of a Christmas gift. When I look at the faces of the thin, sick, unwanted children, I am convinced that I am looking upon the face of Jesus. When we give to them, we are giving back to God - this is Christmas.

Matthew 25:35-40 (New International Version)
35For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.'

37"Then the righteous will answer him, 'Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38When did we see you a stranger and invite you in, or
needing clothes and clothe you? 39When did we see you sick or in prison and go to visit you?'

40"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.'

I'm trying to relate this to my children. They are already better persons from having a baby brother with Down Syndrome. They are more compassionate, more giving and more accepting than any other children I know. I told my 16 year old son that I feel God leading me to adopt a child with Down Syndrome. I asked him what he thought about this. He said that if God is telling me to do it, then I had better do it!

When Ralph's health is more stable, I'll do it. But Oleg can't wait. Oleg and many others need a mommy and daddy right away. Whatever you do this Holiday season, help someone else. True thankfulness is more than a feeling, it is doing something, taking action.

Here is a challenge: When you are feeling blue, broke, and afraid of the future, find a way to help someone else. Write a note, make a phone call, make some cookies for someone...doesn't have to be an expensive gift. You'll feel better and so will they. If you can't help me help Oleg or one of the other Reece's Rainbow angels, find someone to help! And have a Merry Christmas!