Monday, December 29, 2008

A couple of days before Christmas some friends dropped by. It was Sam and Jean! They had a box of 10 big plastic candy canes filled with chocolate kisses. One for each of us. She had a cute new haircut, I noticed. They only stayed to chat for a few minutes.


Sam and Jean are very special people. We go to the same church, but we didn't know them at all until they began showing up at our house with boxes of food every month last year after Ralphie was born. Each month would bring another visit and more steaks and other goodies.


Sam was a helper in Rose's Sunday school class at church. Jean was a public school special education teacher. She would bring me many bags of school supplies for the kids each Fall.


Together they were foster parents. Several sets of kids have come and gone over the past year and a half that we have known them. One time they took our older kids and their kids out for a night at the amusement center. Another time they took our younger kids and their kids to the zoo together. We had a barbecue at their house last summer.


We hosted a birthday party for their foster daughter at our house this Fall. At 14 years old, it was her first real birthday party! Jean and I and this girl went to a women's event at our church this Fall, as well. She was a very troubled girl, but they were not afraid of her. Jean just wanted her to know that someone loved her.


Sam and Jean have both had more than their fair share of health issues. I couldn't even count the number of times that Jean had to be taken to the ER. She almost always had a cheerful attitude though.


Jean suddenly passed away yesterday. We were all very shocked and don't even yet know what happened. I know Sam is going to miss her like crazy. My consolation is that she was a devoted follower of Christ and she shared my love for unwanted children. She taught me much about giving. We will miss her but are happy that she is now completely healed.

Thursday, December 25, 2008

First Christmas - Well..sorta

Here is some footage from today, Ralph's first Christmas at home. Last year he was in the hospital with adenovirus - a nasty case of pneumonia. It's also his first gift opening experience as he spent his 1st birthday in the hospital as well.

We took over 300 pictures today. There are some funny looking ones, too! Why is it that I never see a double chin in the mirror, but there it is when someone takes my picture?

Merry Christmas to you!

Wednesday, December 24, 2008

Ralph

Well it is Christmas eve and it looks like we will be sharing Christmas together at home this year! In fact, we won't be going anywhere tomorrow. If we stay in PJs the whole day - that's even better!

We've been trying to convince Ralph for a long time that standing and walking are good things to do. He seems to be getting the idea, finally! Check this out:

You may notice that he is digging in and walking on his heels. Not good. He doesn't get to see his PT for a couple more weeks though.

You may notice that he is not wearing his cannula. He has developed a habit of chewing on it! I do my best to keep it on during the day and try not to stress out about it. He does quite well at keeping it on at night, which is when I monitor him anyway.

Monday, December 22, 2008

Way too funny!! You gotta watch this!

Send your own ElfYourself eCards

Cleaning and purging day!

We had a little cleaning party today. My laundry room was getting ridiculous! Plus, Grandma Linda is coming for Christmas. I'm not sure if I can live up to her standards with eight children in the house. But, we hope to avoid grossing her out!



So why should I mop the floor when I have the "A" Team? Four kids, each with a washrag, can make quick work of the kitchen and dining room floor! They are also expert at wiping down doors, window sills and baseboards.

I sorted the huge pile of clothes and stuff that my helpers pile up in the laundry room when they don't feel like putting it away where it is supposed to go. One bag of trash, one bag to Goodwill, one laundry basket for the consignment store, one box to store for Ralph and one box of baby girl clothes and a ton of clothes that the kids forgot that they even had! Seriously, my kids have way too many clothes! This purge is long overdue.

I boiled 5 pounds of potatoes and started the beans for tonight's chili. The potatoes should make enough hash browns to last all week. Now my legs are shot! I'm going to chill out on the couch for a while.

Sunday, December 21, 2008

Problems? Not me.

My attitude is nearly completely adjusted thanks to Christine. I live an incredibly comfortable life. Maybe that has been part of my problem.

It is very easy where I live to forget about the kind of suffering that exists in the world. I have to face it, and look at it, and let it change me. I have to do more for God's children and less for my selfish self.

I can easily become overwhelmed by the magnitude of the problems in the world. I could easily do nothing because I wouldn't be able to make a difference. But it is not my job to save the world, is it? That has already been arranged. It is my job to love God and love His people and do what is right.

Do you need an attitude adjustment as much as I did? Then pop on over to Christine's blog and check out the video of Sam and Esther. (If I could figure out how to post it here I would.) It may change more than your attitude.

Saturday, December 20, 2008

I'll take a little cheese with my whine.

I'm having problems. It feels like someone powerful is opposing me. I can't get anything done. Does that mean I'm doing something right? Or something wrong?

I just wanted to make a quick shopping trip yesterday. I promised Rose a trip to the dollar store a few weeks ago when she go some tooth fairy money. So my plan was to go when she got home from school at 4pm.

But, Chipper got done with wrestling practice at 4:30. So now the plan was to pick up Chipper and take him to the dollar store with us and then come home.

But, Chipper had a camp out this weekend. He needed to be packed and up to the church by 5:30. So now we had to go home so that Chipper could pack quickly and we would take him to the church and then go to the dollar store.

We get to the church at 5:30. No one else is there. So we wait. And wait. People start to show up around 6. All the time we are waiting, Rose is in the back seat asking me when we are going to go to the dollar store.

As Chipper got his gear out of the car I suddenly thought to ask him if he packed his medication. No? No. I don't have time to run home and back before they leave. Chipper borrowed a cell phone to call dad at home.

If you know Chipper, you will know that I should have called myself. For some reason he gave me the impression that I needed to go home and get the medicine, so I went. When I got home, dad was gone. He HAD brought the meds up to the church. I. Give. Up.

I give up. It is now 6:30, I still have to cook supper. I told Rose we would go in the morning. She was fine with this because grandma Connie was having the little kids over to her house last night.

We did go to the dollar store today! Rose had $1 to spend and it was a very hard decision to make. I was going to run by the grocery store, but ran out of time. Surprise, surprise.

Oh, while I'm complaining...Ralph is so attracted to my computer that he keeps ripping keys off. The "o" the "c" and the "2" and really messed up. I put them back on, but they are all crooked and don't work right. Grrrrr. I suppose I'll have to take it in for repair, $$$.

Also, I have carpal tunnel syndrome ONLY when I am pregnant. I'm going a little nuts that I can't feel my hands most of the time. Three more months of this seems like forever.

The doorknob fell off the front door.

OK, I'm done.

Wednesday, December 17, 2008

Gold nuggets to share

I've been putting off posting for a couple of days now. I DO have stuff to share...I'm not sure why I'm not exited about sharing it. I guess maybe sitting in front of the Christmas tree this time of year makes me want to treasure some things up in my heart.

Here are a few of my treasures.

It has been so cold here. Single digits early in December is out of the ordinary. But, I'm so thankful to have a furnace and hot water. I've heard from some families traveling in Ukraine right now that many places have no heat and no hot water. Winter is not even technically here yet!

That makes me think of the precious orphan children in Eastern Europe that I've been praying for. Are they suffering from the cold? On top of malnutrition and lonliness? It is enough to bring me to tears and to my knees. I feel so small and helpless. Only God can make these things right, so I go to him.

On a happier note, I feel so privileged to have introduced a new friend to Reece's Rainbow last month. She did not know that this Down Syndrome Orphan ministry even existed. Now her and her husband are planning to adopt a little girl from Eastern Europe. Wow! I'm so humbled that God would use me this way to rescue one of his little children.

I was hopeful that I could announce that we would be pursuing the adoption of a child with Down Syndrome from Eastern Europe this year. It is quite obvious to me that God is leading me down this road. The whole idea of adoption is a picture of God's love for us. A more perfect kind of love. If you really want to know how I feel about this read the Reece's Rainbow blog post on redemption here.

God has other plans for me this year it seems. While I've been pining away for a child on the other side of the world He has been creating new life in me! James and I are expecting a new baby in March. I've been treasuring this secret for awhile. We are led to believe that this baby is a girl! Rose is quite excited as she has prayed for a little sister for some time now.

This time last year Ralph was in the hospital with pneumonia and we were bidding the year 2007 good riddance! This year has come and gone like lightning. There were some scary hard times, and I've learned a lot, much like the year before. I'm looking forward to 2009 as a new challenge, another mountain to climb. Oh my...I better quit this. I really need some sleep!!!

Friday, December 12, 2008

What have I done?

I borrowed this meme from Melissa at Multi-tasking Mama. Sounded like a fun way for my readers to get to know more about me. I enjoyed learning the things about Melissa!

It’s just a way to give your readers a little more insight into your life and what you have done! Enjoy! Feel free to borrow this and let me know if you do so I can come read yours! The things in bold are the things I have done and the things I have in red are the things I would like to do:

1. Started your own blog (I actually am in the process of helping a couple of other people start theirs, too.
2. Slept under the stars
3. Played in a band (school bands count right?)
4. Visited Hawaii (someday!)
5. Watched a meteor shower (piled the kids in the truck at 3 am for a drive in the country so we could see it better)
6. Given more than you can afford to charity (yes, but you can't outgive God)
7. Been to Disney World (as a young child - we've not taken our children)
8. Climbed a mountain (I didn't make it to the top - does this count?)
9. Held a praying mantis (ewwww!)
10. Sang a solo (a couple of times too many - now retired)
11. Bungee jumped
12. Visited Paris
13. Watched a lightning storm at sea (I'm a Kansas girl - never been on the sea.)
14. Taught yourself an art from scratch (does knitting and sewing count?)
15. Adopted a child (someday! This is high on my priority list.)
16. Had food poisoning
17. Walked to the top of the Statue of Liberty (no, but I floated past it in a party boat)
18. Grown your own vegetables (yumm! looking to expand the garden this year)
19. Seen the Mona Lisa in France
20. Slept on an overnight train - I've heard about those overnight trains in Ukraine!
21. Had a pillow fight
22. Hitch hiked (SCARY!)
23. Taken a sick day when you’re not ill (honey, would you call in for me?)
24. Built a snow fort (LOVE the snow)
25. Held a lamb
26. Gone skinny dipping
27. Run a Marathon (running sucks! cycling rocks!)
28. Ridden in a gondola in Venice
29. Seen a total eclipse (I saw the most incredible lunar eclipse in Arizona back in hmmm...1997?)
30. Watched a sunrise or sunset (I love the sunrise after you've been driving all night)
31. Hit a home run
32. Been on a cruise
33. Seen Niagara Falls in person
34. Visited the birthplace of your ancestors
35. Seen an Amish community (Always interesting to see a horse and buggy hitched up)
36. Taught yourself a new language (Russian anyone?)
37. Had enough money to be truly satisfied (why am I NEVER satisfied?)
38. Seen the Leaning Tower of Pisa in person
39. Gone rock climbing
40. Seen Michelangelo’s David
41. Sung karaoke (I want to but I freeze up)
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant
44. Visited Africa - I have a friend in Ethiopia who has extended the invitation.
45. Walked on a beach by moonlight
46. Been transported in an ambulance (with Ralph, several times)
47. Had your portrait painted
48. Gone deep sea fishing
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling
52. Kissed in the rain
53. Played in the mud
54. Gone to a drive-in theater (They have triple features at our drive-in, if you can stay awake that long!)
55. Been in a movie
56. Visited the Great Wall of China
57. Started a business (several actually, some successful, some not so much)
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies (Oh my gosh! Just ask my poor mom. I had to be the top seller every year. Hundreds of boxes to deliver.)
62. Gone whale watching
63. Got flowers for no reason (Too impractical)
64. Donated blood, platelets or plasma (yikes - doesn't that involve needles?)
65. Gone sky diving ( no stinkin' way)
66. Visited a Nazi Concentration Camp
67. Bounced a check (snort! Wish I had a nickle for each one.)
68. Flown in a helicopter
69. Saved a favorite childhood toy (my stuffed mouse Topo Gigo for one)
70. Visited the Lincoln Memorial (no, but I was born in the Land of Lincoln)
71. Eaten Caviar (unfortunately)
72. Pieced a quilt
73. Stood in Times Square (actually I was walking, no time to stand around)
74. Toured the Everglades
75. Been fired from a job (Best thing that could have happened at the time)
76. Seen the Changing of the Guards in London
77. Broken a bone (I've got big bones! LOL)
78. Been on a speeding motorcycle (yes, my own motorcycle, too!)
79. Seen the Grand Canyon in person (you can't even imagine - unbelievable)
80. Published a book (I have a lot to say - just don't know if anyone wants to hear it!)
81. Visited the Vatican
82. Bought a brand new car (ordered a chocolate brown Dodge Ram truck once)
83. Walked in Jerusalem (I'm so jealous that my hubby gets to go to Israel next year)
84. Had your picture in the newspaper (a real flattering, not, picture of me taking a breath while swimming in a race)
85. Read the entire Bible (can't get past a few of the books)
86. Visited the White House
87. Killed and prepared an animal for eating (I've had a deer butchered on my kitchen island - does this count? No, I didn't personally kill it.)
88. Had chickenpox (while pregnant with Chipper! Have you ever seen chicken pox scars on top of stretchmarks? Not pretty.)
89. Saved someone’s life
90. Sat on a jury (am I weird that I want too?)
91. Met someone famous (a few while working at the Marriott - the Judds, Dick Clark)
92. Joined a book club (I'm very jealous of people who have time to read)
93. Lost a loved one (Grandpa - just last Spring)
94. Had a baby (a few, LOL)
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a law suit (God forbid!)
98. Owned a cell phone (when I'm out, you are out of luck!)
99. Been stung by a bee a wasp
100. Read an entire book in one day (I remember those days.)

As you can see, I'd love to do anything that involves travel! What have you done?Just copy & paste and bold what you have done & un bold what you haven’t.Have fun with it and if you want, comment with your link to your What have you done? post!

Thursday, December 11, 2008

More turkey? Nope...

This time it is a 7lb Honeybaked ham and potatoes that turned up on our porch! The UPS man must think we are really hungry or really crazy.

I can feel the love.

A Punk Coward?!

Thank you to http://www.raisingjoey.com/ for posting this excellent interview with John C. McGinley, aka Dr. Cox from Scrubs: http://raisingjoey.com/?p=1767.



I've known for awhile that John has a son with Down Syndrome, but I didn't realize how much I liked him until I read the interview. He has a lot of good things to say, but the part of the interview that stood out to me was where he outright calls a popular award winning film director a punk coward. See if you can guess who!


Wednesday, December 10, 2008

Just in Time for Christmas - Dark Knight for Christian Parents

The movie The Dark Knight came out on DVD this week. My dear friend Eileen, a gifted writer and literature teacher, has written an essay about the movie that she wishes to get into the hands of as many Christian parents as possible.

If you have teenage children, chances are they have either seen the movie or bugged you to let them see it! Would you be surprised to hear that the Gospel message is contained in this dark movie? Read what Eileen has to say, discuss the movie with your children and decide for yourself. Here are excerpts of a note that I received from her today:

Just a note to let you know that I have posted my essay (tome?) about The Dark
Knight on my blog at http://lochinvarguides.blogspot.com/.
It is entitled, “Neopaganism Meets Christianity in The Dark Knight” and concerns
what I perceive as the Christian allegory underlying the movie. The essay
ended up being quite long, so I have entered it in my blog in five blocks:

Part I: What Hath Ledger Wrought?

Part II: The Protagonists

Part III: The Antagonists

Part IV: Man

Part V: Bibliography


In Him,

Eileen/Mom/Mrs. C.

Lochinvar Guides
http://lochinvarguides.blogspot.com/


Tuesday, December 9, 2008

9 words never spoken

I almost forgot to mention the most amusing part of my Saturday with James:

My husband dragged me to a Pampered Chef party!

Yes, it is true. And those are 9 words I never imagined that I would say. My poor old can opener has not been opening cans very well lately. He HAD to have a new one. My mini-server's handle fell off a long time ago. This is his favorite fried egg turner for our little cast iron egg pan. I ordered him two new ones! To be completely fair, it WAS a come and go party so he didn't have to sit through a presentation or anything. But really!

He found a Pampered Chef catalog in the waiting room at the doctor office a few weeks ago and poured over it. He asked me if I was sure I didn't need anything! So when our neighbor had this open house over the weekend, he dragged me across the street before we did ANY other shopping.

I just wanted to share a little chuckle with you.

Yummmm! Warmness.

Thomas: Mom, what's that stuff called that you're cooking?

Me: It's called soup.

Thomas: What kind?

Me: Potato and sausage.

Thomas: Oh! I like that kind.

Me: What do you like about it?

Thomas: I like the smell and I like the taste of it. And I like the warmness.

Busy weekend

Time is just whizzing by! I don't want off the ride, but I might enjoy it more if it wasn't going so fast.

James and I had a date of convenience Friday night. This is how it went - Wesley needed a ride up to Hillsboro for a banquet with a friend. It's too far to make two trips in one night so we told Richard that he was babysitting, then James and I set out to deliver Wesley and we made a date out of it! There is a nice little Mexican restaurant in this little town and not much else, unless you consider Wendy's or Sonic date-worthy. We had a nice dinner. It wasn't like the mouthwatering food we had in Arizona, but not bad for the mid-west. Then we closed down the local Alco. I guess you could say we "did" the town!

Saturday was interesting. My sweet friend Mary offered to babysit my children, all of them-even Ralph, all day long - 11:30am - 7pm!! She did this for several families that day as a Christmas gift. My only dilemma was whether to go home and sleep all day or go Christmas shopping. So what do you think I did? Shopping of course!

I had a long list of errands, tasks and gifts to buy. James and I went together and knocked off a good portion of my list! It's pretty incredible for me to spend any time with him at all much less two days in a row. We wasted a lot of time browsing and thinking and revising our gift ideas for the kids. It was a good time.



Sunday was also a busy day. After church I had furniture to move and vacuuming to do. You see, we promised the kids that we would for sure put up the Christmas tree today. Quite a project. Many of my ornaments are things that the kids have made over the years. Some are ready for the dumpster! The sequins are gone, the popsicle sticks have come unglued and such. The only really nice ornaments are from my quilting group's Christmas party ornament exchange! This year's party is next week - not to be missed!

Isn't this young man getting to be rather tall?

Ralph was an angel the entire time! I was worried that he would be messing around with the tree a lot. He hasn't even touched it in the past two days! Leroy on the other hand...

Big kids helped little ones spread the ornaments out nicely. I put on the hooks!

All done! By the way, how to you keep shirts on your young boys? I am forever requesting that they please put on a shirt! Now everyone was ready to watch the movie Prince Caspian. A fun way to end a busy weekend!

Thursday, December 4, 2008

More turkey!

We got two more turkeys today! One is from a mystery friend and one is the one we ordered for ourselves. Yikes! The freezer is full! We should invite some friends over for a turkey feast.

Ralph had a follow-up appointment today. His lungs sound perfectly clear, isn't that great? The thimerasol-free flu vaccine shipment arrived this week so Ralph got his flu shot today. He's been on a waiting list for the mercury-free version.

Can you believe that the mercury-free stuff is not widely available for babies and children? If you don't know to ask, you would never know what your child is getting. Of course, I had to sign an insurance waiver. This is so the doc's office can charge me $60 if my insurance company declines to pay. Whatever.

Since Ralph has been sucking up more oxygen than usual, we had to go to the home health office to pick up some extra tanks this afternoon. Some of you know how I feel about this screwy outfit. Every time I deal with them I ask myself why I haven't yet switched to another company. Today was no exception.

I called this morning to make sure I could pick up 10 tanks. They recommended that I come to their downtown office, since it was closer to me. I told them I would be there at 2pm. I got there at 2pm. No tanks. Apparently someone had to go pick them up at another location and she wasn't back yet. We (me, Wes, Thomas, Leroy and Ralph) waited for 40 minutes for her to show up. Since I had to be home before 4pm to get kids off the bus and get Wesley to work on time, I didn't get to finish all my errands. I didn't have a choice of whether to wait for the tanks or not - we were out at home.
This is the same company that called me last month here in Kansas because they had an order to deliver tanks to me in Tulsa. Oh, they also thought my name was Connie. This is the same company that can't figure out how to file an insurance claim from the information listed on my insurance card. Somehow the hospital and doc's office can. I don't know how many times I've called them trying to get them to file a claim. Then they had the nerve to send our bill out for collection! That's been taken care of, but we still get an automated phone call from them EVERY day.

I haven't posted many pictures lately. My son, Richard, has been hogging his camera! Here are a couple of cute ones:



Wednesday, December 3, 2008

Unwinding

Ralph is doing quite well. I'm not as good.

I didn't realize how much sleep I missed over the weekend until it hit me on Tuesday. I still feel hungover today! I need a good 12 hours, uninterrupted, to unwind properly. One good thing about St. Francis - the macaroni and cheese is the best!

We got another package from Honeybaked Ham Co. today. Steaks! My husband's company gives out a voucher for a turkey, or a comparably priced item, from Honeybaked Ham to their employees as a holiday gift. Apparently some folks thought it would be a good idea to send in their voucher and have the turkey, or other item, to us! So far we have received a huge cheesecake, a turkey and now the steaks! What a nice bunch of folks, huh?

Today I'm signing Chipper up for String Fling. This is an orchestra festival in January that I attended when I was young. Things have really changed in the last 25 years. Did you know at his school they don't challenge for chairs anymore? For me, much of the incentive to practice was to challenge the person ahead of you for their chair. If you played better you get to move up one chair. Are these teachers trying to make wussies out of our kids?

Wesley and dad went hunting today. It was opening day of rifle season. I know that Wesley was hoping to fill up our poor freezer even more. Too bad they didn't see anything.

Monday, December 1, 2008

An hour? What a joke!

So, Dr. K said we'd be ready to go in an hour. She wrote instructions in Ralph's progress notes to discharge him. Then the attending physician writes the discharge orders. Then we get to leave. Right?

Right.

God bless the persistent nurses who kept reminding him, and reminding him, and reminding him that we were still waiting for discharge papers and prescriptions. Have you ever met someone who was a little too focused? Someone who couldn't multi-task to save their life? Men!

Mental note to self: residents begin a new rotation on December 1st. Attending Dr. may be preoccupied. Be prepared for dumb questions and long waits.

By the way, Ralph's cultures came back positive for para-influenza virus, AKA croup!

So we got home at 4pm. Four hours later than I had expected. It's OK. We are here, life is good.

I managed to clean up the front room and rearrange some furniture so we have room for our Christmas tree. The carpet is appalling! I'll rent a carpet cleaner later in the week. If that doesn't help, I may be in the market for an area rug. I am re-instituting the "remove your shoes and wash your hands" rule upon entering the house. Don't forget it! Can't be too careful, can you?

Thanks for all the prayers! Ralph is not 100%, so don't stop now.

11 am

I just saw the doc! We'll be out of here in about an hour!!! I really like Dr. K. She always seems very reasonable to me and I can tell that she trusts me. Phew!

Is it really Monday already?

I was looking forward to putting up the Christmas tree over the weekend. Maybe even putting some lights on the house, shhhh! Now it is Monday and the kids are back to school. I'm still sitting in a hospital room with Ralph and I'm sure the house is wrecked.

I'm really hopeful that he will get to come home today. His sats were very good all night long, but then he was getting breathing treatments every 2 hours. His sats are good unless his nose is plugged up. I was trying to clean his nose this morning when he got another bloody nose! Then I noticed he was breathing through his mouth a few minutes ago so I cleaned his nose again. Another bloody nose!

The nurse says that lots of kids do that here because the air is so dry. I just hope this nose business isn't the thing that keeps us here another day. It is 10:30 am and still no doctor, not our doctor anyway. But you can surely tell that it is Monday! This morning we have seen a medical student, 2 student nurses, one nurse in orientation, Ralph's nurse, resp tech. and the resident! I like the weekends because it is so quiet up here.

Another medication snafu this morning! The nurse brought in Ralph's 7 am meds and asked me if I want his lasix pills crushed or what. Pills? She said they were in his medicine box. I sent her back to look for the little brown glass bottle of liquid lasix. Grrrr.

I asked our day nurse, because she is the one that I totally trust, to check out his medicine box and let me know what is going on. She said that I can request that the medicine bottles be brought to me so that I can draw up the doses! Wow! I wish I had known this 3 or 4 days ago. I'm so uncomfortable with other people in charge of his medication. It turns out that the pills are, indeed, his. They were sent up from the pharmacy because they didn't know that he had home meds here. But, pills?

I'll update after I see the doctor. I certainly hope that today is the day we get to come home. I'll let you know.

Sunday, November 30, 2008

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, November 29, 2008

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.

Friday, November 28, 2008

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.

Saturday, November 22, 2008

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.

Wednesday, November 19, 2008

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?

Tuesday, November 18, 2008

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!


Monday, November 17, 2008

MomDot Blog Party Day 4



DAY FOUR QUESTION: What is your favorite Holiday recipe? Describe your Holiday table and your biggest holiday cooking disaster?

Day Four Blog Party Question is Brought to you by Bottlewise and Glow Mama

I love to bake. I love to make things from scratch. I always peeled and quartered potatoes for mashed potatoes until just a few years ago. I can't fit enough potatoes in my mixer now to keep all the big boys happy! I love to make my own bread stuffing and dinner rolls. But, I just had to give it up. I buy dressing mix, potato flakes and frozen rolls now and the world hasn't ended!

One thing I refuse to buy is pie. And Cool Whip, yuk! I prefer to make my own pumpkin pie and pecan pie for the Holidays. And REAL whipped cream is a must. This year I have a couple of gallons of cooked pumpkin in the freezer. I may try to make pies out of it. I'd share my recipes but my cookbooks are packed away from our move!

I'm a little sad because we had a glorious old pecan tree at our old house. The kids and I would head out when the nuts were beginning to drop and smack the limbs with a rake. Sometimes I would stand on the van to reach high enough. The kids would run around and pick up the nuts that rained down and put them in a plastic bin. After a few weeks of drying time, I would crack nuts whenever I had a few minutes to spare. After a while my fingers would be ripped up and sore. The shells were hard but the nuts were tasty. I guess I have to buy them from the store this year.

As far as Christmas sweets, I love to make peanut butter fudge, penuche, and anything covered in white chocolate. My favorites are dipped pretzels and peanut butter balls. For the peanut butter balls I mix natural (of course!) peanut butter with powdered sugar until it is very stiff. Then I roll the mixture into little balls and use a fork to quickly dunk them in melted chocolate. If they are not eaten up immediately I like to dip them a second time after they cool. Yeah, right.

My holiday table is the same as my regular table only we will use a tablecloth! I don't have china and my silverware doesn't match. We can't have candles in the house because the baby uses oxygen. We are traveling to my grandma's for Thanksgiving this year, so I know we will be eating on her pretty china and drinking from her nice water goblets that I remember from childhood. The little children will sit around the coffee table and eat.

My biggest cooking disaster is pretty funny since I'm always determined to make my own pies. One year I made a pecan pie that was impossible to cut into. I don't know what happened! I just remember the kids laughing at me trying to cut into this concrete pecan pie. I finally picked the whole pie up out of the pan and broke it in half with my hands. Now everyone is cracking up! It must have been 8 or 9 years ago, but the older kids still remember.

Saturday, November 15, 2008

Weekend Update

I seriously can't believe that it is November already. Each new month is sneaking up on me. And then, it's gone! My mother called today to ask about Christmas lists. Christmas?! I'm still trying to figure out plans for Thanksgiving. Funny though, as I was cruising down the main street of a nearby small town tonight, I noticed a Christmas tree all decorated and lit up!


Oh, about the deer neck stew...it was delish! I was concerned at first that I'd have to give it to the dog, but it turned out quite good. The meat was very tender and tasty. Better than any old beef stew I've had. I added 5 pounds of gold potatoes and 1 pound of carrots. I did run out of carrots, but it was all I had on hand. Ralph even liked the stew!


Ralph has been coughing at night and I noticed that he has a lacy red rash all over his trunk and face. Viral, I'm certain. He isn't interested in eating much, but he is drinking fine. His sats are good, too. I'll give him until Monday to perk up before I call the doctor.


James has been coughing, too. And sneezing. He was on the phone the other day when he had to sneeze. Did your mom ever tell you not to hold in a sneeze? She was right. James tried to hold in his sneeze and felt something pop in his chest. He's been in a great deal of pain ever since. It's either a rib out of place or a muscle strained.


Richard is at a youth convention in Oklahoma this weekend. Wesley is working today. Chipper had a music festival all day today. Thomas had a sleep over last night. I'm looking forward to Thanksgiving weekend when we will all be together! I'll leave you with a picture of Ralph on his rocking giraffe. Giraffe? I know, it's weird, huh?

Friday, November 14, 2008

MomDot Blog Party Day 3

DAY THREE QUESTION-Have you started your Christmas shopping yet? Do you budget for the holidays? Do you always stick to your budget? Share with us any budgeting tips you may have!

Oh boy! I have just started THINKING about Christmas presents. In the past, I normally would have picked up a few things here and there already. I would have found something special on clearance and stashed it away.

This year is a little different. We are still playing catch-up from when we got behind on our bills. Ralph's medical bills are still rolling in. And, we've had two house payments for a long time until just last month when we FINALLY sold our old house. Phew!

I've never budgeted for the Holidays. Maybe I should, but I just don't. I'll make a list for each child of things that they need and want. Daddy and I will go over the list and shop for them together. This may take more than one trip! LOL

Since I don't have budgeting tips to share, I'll share a cheap-o gift idea. There have been other lean Christmas times for us. One year when I had to literally clean out the couch cushions for loose change, I made rice bags for each child. I bought a large bag of rice from a warehouse store. Then I found some fabric remnants at Wal-mart. I made large 9 x 13 pouches and filled them with rice and sewed them up tight.

These rice bags were the best gift ever! Everyone loved theirs...and we began the rice bag ritual at bedtime. Each child got to put their rice bag in the microwave for 3-4 minutes and head off to warm up their cold bed. Sometimes they would warm one up for their feet while doing homework at the kitchen table. Sometimes I would swipe one to use for myself!

I hope your Christmas shopping is fun and that you don't break the bank!

Day Three Blog Party Question is Brought to you by Appledonia, Hippos Toes and My Bag

Thursday, November 13, 2008

Holiday Traditions

Today is day two at the MomDot blog party and we are talking about our favorite Holiday traditions and traditions that we want to start. The traditions of my family growing up were very different from the traditions of my husband's family. This caused some confusion and friction early on. We soon decided to just do things our own way.

I was used to large family gatherings at Thanksgiving. We dragged out all of the table leaves, all the chairs and sometimes a piano bench. Sometimes we needed a separate little table for the children. I remember swiping stuffed celery and black olives while waiting for dinner to be ready. I remember sitting on phone books so I could be high enough to reach my plate. Turkey sandwiches for supper later. Football zombies passed out on the family room floor. Cousins!

I believe that my my hubs would usually spend Thanksgiving at deer camp while growing up. A four day weekend was not to be wasted during deer hunting season! I'm not sure if his mom cooked anything special...

Starting in 1999 when we had a mid-November baby, I stopped trying to be my grandma and I cut myself some slack in the cooking dept. That year we had pizza and tater tots for Thanksgiving dinner! It was the most relaxing Thanksgiving day ever! A couple of years later we had an October baby and we did the same thing again. I still appreciate a traditional dinner, but I don't kill myself over it anymore. I think it would be a nice tradition to start inviting single, or lonely people to share the day with us. What do you think?

This year the ten of us will be travelling 3 hours for one of those old-time family Thanksgiving dinners. It's going to be crazy, but you never know if you'll get to spend another Holiday with the ones you love. More important than the 5 pies I'm bringing are the memories we'll be sharing and making. Like the MasterCard commercial...priceless.

As far as Christmas goes, we always like to put up the tree at Thanksgiving. Growing up, we would wait until it was closer to Christmas, but my philosophy is why not enjoy the festive decorations as long as possible? With eight children I don't do any of the decorating. I hand out ornaments with hooks to the kids one at a time and they trim the tree! The big kids help lift the little ones to place ornaments up high and help spread them all out nicely. I take pictures also.

We love to watch movies together at Christmas time. It' a Wonderful Life is a favorite, along with The Christmas Story. We also play games, although it is hard with big AND little kids to find a game that everyone can play. I remember playing charades with my family as a child. I'd love it if I could get my children to play charades!

On Christmas morning, it is ridiculous! Thankfully, my kids have always slept until a reasonable hour. They get to snuggle in bed with us until everyone is up and then we all go together to check under the tree. Then the kids go in the hall and start over so we can take the fake surprise pictures, because we forgot to get the camera ready the first time.

Last year was a difficult Christmas. Ralphie was in the hospital from December 17 - 31. I just cannot bring myself to leave him when he is there, so I didn't get to spend much time with the other children over Christmas break. I did come home to go to church on Christmas eve and wake up with the other kids. When I got back to the hospital, I found that Santa had visited Ralph, too! What a crappy way to spend your first Christmas, huh? We celebrated again on New Year's Day so he could open some presents at home.

I don't know about you, but I get a little blue when the decorations come down. It would be fine with me if my house was always Christmassy! What are your family traditions? Share them with us and be sure to thank today's sponsors of this fun blog party at LaPlates, Let's Go Strolling and Natity's Designs.

Wednesday, November 12, 2008

MomDot Blog Party Day 1

Today kicks off the Christmas Blog Party at MomDot! Day 1's question is: Introduce us to your family and share pictures from past Holidays.

Here is our family portrait from last Christmas:

Sorry, I don't have access to any other Holiday pictures :-( Meet my children:



Here is Wesley, age 17. He is a prolific writer and future film maker.


Here is Richard, age 16. He wants to study engineering as a possible pre-med course of study.


Here is Chipper, age 13. He is a history buff who wants to be a professor.


This is one of the only pictures I have of Thomas by himself, age 9 next week. He is a future family physician. He cares about people!

Here is Jordan, age 7. Isn't my little chef a cutie?

This is Rose, the princess of the family, age 5. She wants to be a mermaid and a baby doctor!

Leroy, age 3, loves the movie Cars. He wants to be a truck fixer. How about those curls?

This is Ralph, age 18 months. He is the superstar of the family. I know, he needs a haircut - I trimmed the top this morning, so now he has a nice mullet!!

It is strange to me that my children seem to be so very certain of their future professions. I still haven't decided what I want to be when I grow up!

Day One Blog Party Question is Brought to you by La Belle Toile and This and That by Randi




Special Exposure Wednesday

How many ways are there to avoid wearing your oxygen anyway?

Tuesday, November 11, 2008

My Tuesday - gotta brag a little.

Today is my major shopping day. It just about kills me to pay full price for anything. So, when I find that there are staples on sale AND I can find coupons for them, then its stock up time! This week is tomato sauce, diced tomatoes, Lysol, Listerine, and rice week. After my 6 trips through the checkout, due to limits, I'll have enough tomatoes and rice to last for the winter. Here is my receipt from this morning:


I bought 10 large cans of tomato sauce, 10 large cans of diced tomatoes, 5 boxes of popcorn, 5 boxes of toaster pastries, 2 cans of green beans and 4 candy bars. $23! With a large family, it pays to stock up. I plan meals around what is on sale and what I have on hand. Besides, in this political climate, it can't hurt to have some goods stashed away.

Speaking of what I have on hand - my husband brought me a deer neck last night! Sorry if you are not into eating animals! I think that deer are very beautiful - I don't know if I could shoot one. But, they also happen to be very tasty!

James and the boys cut up two deer last night and after many hours they were very tired and sore and didn't want to deal with the neck. I was hoping that it would make a good stew but I can't fit it in my stock pot! I'll have to let you know how this turns out because I've been simmering for 14 hours now and I still can't get the lid to fit!

**********************************************************************

UPDATE 9:15 p.m

The stew is looking good and smelling yummy! I will let the meat cool in the broth before I pick through it for gristle and bones. Tomorrow I'll add the veggies and bake some bread and it will all be ready for an early dinner.

I didn't quite finish my shopping today. The stores ran out of tomato sauce before I could get back tonight. I ended the day nearly on target though :-) All together I spent $100.89. Only over my budget by $0.89! For this I got:

  • 50 - 28 oz. cans of tomatoes - sauce, diced and crushed
  • 22 rice mixes - jambalaya and such
  • 10 boxes of popcorn
  • 9 boxes of toaster strudel
  • 5 cookie mixes
  • 5 boxes of cereal
  • 5 cans of Lysol
  • 5 bottles of Listerine
  • 4 boxes of fruit snacks
  • a couple of other misc. items

I hope you don't mind me braggin' a little bit. I'm really glad that I got the Lysol today because Rose is not looking good. She has been whining for a few days and now it appears that she has pink eye! We'll be extra cautious from now on through cold and flu season to wash hands and spray doorknobs and telephones and other things that people like to touch. I can't imagine how pitiful Ralph would be if he contracted pink eye, too.

Monday, November 10, 2008

My Monday

Last night was rough. I had to get up many times to put Ralph's cannula back on when the O2 meter alarmed. One time his sats didn't come back up after a minute so I had to go check the oxygen tank. Yep, empty. Changing tanks in the middle of the night is not my favorite thing to do. I was convinced that it was almost time to get up anyway, but when I looked at the clock it was only 4 am!

Later, James was kind enough to get up an fix breakfast for the little kids so I could sleep a bit longer. I didn't get more than 10 or 15 minutes before Ralph woke up. It is funny to watch him wake up. He will sit up for a minute and flop back down. Then he will roll over and over and play with his feet. I like to lay there and watch him for a while.

I watched him a little too long today because when I got up to change him and make his medicine I found that he had poop up to his armpits! There is nothing like waking up to this kind of mess. I carefully wiggled him out of his shirt and cleaned him up as best as I could before dumping him in the tub.

Even though the weather today was dark and rainy and cold, Thomas had a good day at school. He would have been done before lunch if not for science. He is learning how to read and take notes. This is painful and slow. And it is so hard to stay awake when the weather is like this.

Tonight was chili night, perfect considering the weather. I normally make chili and homemade cinnamon rolls on Monday nights. I didn't get the dough started early enough today, so I (horrors!) bought some rolls from the store. I'll do better next week, I promise.

We didn't get to sit down together anyway because James and the big kids were cutting up the two deer that he shot yesterday. Two deer! In the space of about 15 minutes. Isn't that impressive? It is a lot of work to cut up, but now we have more burger in the freezer. I hate to run out of deer meat. Ground beef just tastes dirty and greasy to me.

Friday, November 7, 2008

Handbag drawing and other stuff

I'm drawing a name tonight. The lucky person will get a customized handbag from www.sassyklassy.com! I'm so happy that $235 was contributed to Oleg's adoption grant fund. I'll be even more tickled if some wonderful family commits to him during the Christmas Angel Tree Project!

Here's what I did - I put all the names into column A in a spreadsheet. I then generated a list of random integers and put them into column B. Then I sorted the two columns by the numbers in the random list. This gives me a random list of names. Next I used a random integer generator to pick one number - the corresponding name is the winner! Am I a geek or what?

The winner is - #12 Laura Mendez! Woo-hoo! I can't wait to see how your new creation turns out.

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I spent the day organizing my bills and stuff. I just put the bills in a pile until I have money to pay them - great system, huh? The pile was getting out of hand, but now it is under control again.

Part of the big pile is claim forms for our health care flexible spending account. This is a way to use pre-tax money to pay for medical bills. For years I have sent in copies of receipts along with a form to be reimbursed for medical expenses. This year our company sent out a Visa card to use instead.

I was so happy about not having to send in receipts and forms. It was going to be great. Except one thing - 3 of Ralph's 4 prescriptions are from a compounding pharmacy. When I use the Visa card there the payment gets rejected every single time. The dentist payment was rejected, too. So today I spent today tracking down receipts and filling out forms - the very thing I thought I wouldn't have to do anymore. GRRRRRRRR!

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I personally put Ralph's cannula back on 17 times today. (Other people in the house also replaced it a time or two.) Yes, I counted. I seemed like 100 times, but it is not right to exaggerate, so I counted.

I have a long mirror propped against the wall in the hallway where Ralph plays. It is so funny to watch him crawl down the hall while looking in the mirror! He crawls back and forth, looking at himself all the while. He even shares his bottle with the baby in the mirror, so I know he won't die of thirst like Narcissus!

Ralph has a couple of new signs, eat and all done. He uses both appropriately. We are going to start working with flash cards very soon. My goal is to teach him some sight words along with their signs. He's a very bright boy. I don't see any reason why he shouldn't be learning to read!

Thursday, November 6, 2008

Last day...

Today is the last day that you can chip-in for Oleg through my blog. He is still waiting on a family to commit to him. I think he is a cutie, but then I have a big soft spot for little boys!

Oleg is one of the many beautiful children which are photo listed in the Waiting Angels Gallery at Reecesrainbow.com. You may want to consider a gift to one of the other angels listed. You can also see the totals of the gifts received for each child since the Angel Tree project started on November 1. Pretty impressive, huh?

Wednesday, November 5, 2008

Pulmonary Hypertension

Thanks to my friend Pam at Rhett's Journey I found out that November is Pulmonary Hypertension Awareness Month. There are not many words, outside of cancer perhaps, that strike terror into the heart of this mother like pulmonary hypertension.



I describe PH to people as high blood pressure in the lungs. It's really a big deal because the high pressures in the lungs cause the heart to work harder to push the blood through, resulting in right heart failure. This can be deadly as the heart simply wears out.



Symptoms of PH are chest pain, coughing, shortness of breath, edema, fatigue and lightheadedness. OK, now imagine asking a baby if they have chest pain or feel fatigued! Ha! Ralph has a regular EKG, and also an echocardiogram which can approximate the pressures in his lungs. He has had a heart cath done twice. With a heart cath the doctors can directly measure the pressures in the right heart.



Ralph is on PH medications as well as oxygen around the clock. He doesn't mind wearing his nasal cannula most of the time. If I leave him in his jumper seat too long, though, he rips it off and starts chewing on it! Also, if his 50ft. of oxygen tubing gets hung up on something he will take it off and keep right on crawling. I suspect that he has learned that I cannot find him if he crawls away without the cannula on!



At night I monitor Ralph's blood oxygen levels with a pulse oximeter. This is a handy dandy piece of equipment, even though it doesn't work when he is awake. When Ralph was sick with rotavirus last Spring it was the oximeter that let me know he needed immediate medical attention. I could not get a signal on either of his feet that one morning. The meter worked on my finger, so I knew that it was working properly. I figured out quickly that his pulse was too weak for the meter to pick up. We raced to the doctor's office and then on to the hospital immediately. Just in time, too.



Ralph has been nearly completely healthy since that scare. And since his heart repair in June and an adjustment in his medication in July, his heart size is improving and his pressures are normalizing. We are on a long and winding road. Will he ever outgrow his PH? Children sometimes do, although it is considered a chronic and incurable condition for adults. Will he EVER get off oxygen? I sure do hope so. Probably not for a while.




When you are dealing with PH, Down Syndrome doesn't seem so scary. Sometimes it seems that the docs, at the hospital especially, are so hung up on Down Syndrome that they don't see him as a baby with PH. I get so worried about the PH that I sometimes forget about the DS!



I'm convinced that there are certain aspects of gene over-expression that come along with Down Syndrome that may aggravate his pulmonary hypertension and it drives me nuts. I don't have the knowledge to read and understand the research in these areas and I don't really have anyone who is all that interested in helping me.



Perhaps Ralph will live to see amazing advances in treatment! We briefly discussed a heart-lung transplant with the doctors in Kansas City last year, but the survival rate is poor and can be a case where the cure is worse than the disease. New drugs are being developed, but many take a terrible toll on the liver. I'm quite thankful for Sildenafil, AKA Viagra! It has done wonders for him. This drug was initially developed for high blood pressure but the researchers found that it had an interesting side effect - and the rest is history.

Couch potatoes

I left to run an errand the other night and came home to this sweet scene. Richard doesn't get to spend much time with Ralph so this warmed my heart. I consider my children to be gifts to one another. What a fortunate bunch!
On another note, Richard is participating in a "Doc for a Day" program this weekend at our local medical school. He will learn about tying surgical knots, intubation, cardiac skills, obstetrics and how to prepare for medical school! He is a sharp, confident young man and I hope he finds something to get excited about. He will be successful at whatever he chooses to do, but I feel he would make an excellent surgeon.

Tuesday, November 4, 2008

I said I wouldn't

I said that I wouldn't sit around watching TV tonight and I'm not. I'm not really into drama like I used to be anymore. Just tell me when it is over, please.

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I love the whole idea of homeschooling. To me, it seems to be the most efficient and natural way for a child to learn about the world. But it is not always a picnic! I have found a great incentive to get school work done in a reasonable amount of time. If Thomas can get his required work done before 1pm then he can swim laps at the YMCA or take a short field trip! We can easily do this two or three times a week.

Today Thomas finished the equivalent of 13 lessons before 1pm, so I took him and Leroy with me to vote. We drove over to our little community building after lunch to find no waiting. The boys got an "I Voted" sticker, but not one offered me one. I was done in 5 minutes and we talked about elections and voting as we made our way down to the YMCA. When life and learning intersect it makes for a great field trip!

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The leaves are starting to fall here in Kansas. I've been waiting for this because I want to try shooting some portraits of the kids in a Fall scene. I've been keeping my eye out for a place to do this. I may check out the county park here in a few days. If my photos are nice enough I may have trouble getting prints made at Walgreens. The lady at our photo counter is a stickler for a copyright release!

Saturday, November 1, 2008

Pumpkin time!


After Halloween last year I was traveling to Kansas City for a memorial service. I stopped for gas in Olathe and noticed a pumpkin stand next to the gas station. There was a sign that indicated the pumpkins were free! I stuck 5 of them in the van and went on my way. When I got home the next day I surprised the little ones with a pumpkin of their own.
We decided to try to cook them and make some pumpkin treats of some sort. The best thing we made was pumpkin butter. I don't care what all the recipes say, a large carving type makes fine pumpkin butter.

I was hoping to find some pumpkins on sale this morning, but was surprised to find nothing left! Sure, they have the little pie pumpkins at the grocery store, but they are $0.78 per pound. Unreal!

Since we carved our jack-o-lanterns at the last minute yesterday, I thought I might still be able to use them. Since I delegated the cleaning and carving to my hubby, he naturally delegated the cleaning to the kids. They did a pretty poor job of cleaning them out. That's OK, though, because I was able to peel the outside and the inside and get a nice pot of pumpkin cookin'.




This pot is overflowing with one large and one small pumpkin. I add a little water and cook it to death. When all the chunks are soft I blend with a hand blender. Then I add 4 tsp cinnamon, 2 tsp. allspice, 1 tsp. ground cloves and a couple of cups of sugar. It is almost midnight and the pumpkin butter is still cooking. I'm leave it on warm all night long and it will be reduced in the morning. I'll taste it then to see if it needs more sugar then let it cool. Some will go in the fridge in a plastic container and the rest will go in the freezer in freezer bags. Yum, enough for the rest of the year, I hope.