Wednesday, September 23, 2009

We aren't always aware of the passage of time. Sure, our days are hectic and fly by so quickly. Playgroups, therapy, bible study, doctor appointments and so on. How is it that we often stop and say, "where has the time gone?" Why are we so surprised?

A week from Saturday will be Ralph's 3rd Buddy Walk. The first year was sweet. Lots of friends joined us. I really couldn't believe that they would give up their Saturday morning to come walk with us. I was grateful, bus disbelieving at the same time. Wesley carried Ralph across the finish line. Those two are quite close.

Last year's buddy walk was fun. I actually submitted Ralph's photo and registration in time to get t-shirts for everyone. We weren't newbies last year and actually were acquainted with many other participants. 

This year I missed the photo deadline. I missed the early registration and free t-shirt deadline. I promised the kids that we would make our own, but I'm not sure we'll get it done. Time is moving so fast!

On a bright note, this will be our first time walking at the Buddy Walk without dragging an oxygen tank around with us! Also, Ralph can actually walk this year!! He's looking strong. He's lost the baby face. He's growing up.

He loves to talk on the phone. He always calls daddy. He only calls daddy!

Look who else is growing up. Closing in on 12 pounds!

Friday, September 18, 2009

To cut or not to cut?

I took Ralph and dad to get haircuts last week. But, I forgot the camera. When is was Ralph's turn to get in the chair I decided to come back another day...with a camera. Part of me thinks that he would look super cute with longer hair. I know he looks handsome with a little "boy cut." Now I'm undecided. Anita...what do you think?

The sisters! Incredible matching eyeballs!!

Tuesday, September 15, 2009

Can you hear me now?

Ralph got his 1st pair of hearing aids yesterday. Wow!

I was never under the impression that Ralph had a serious hearing problem. He never really acted like it. He was always alert to the sounds around him...including me tip toeing into his room in the morning!

After failing hearing test after hearing test, Ralph was considered a candidate for hearing aids. The ear molds were taken last month and the electronics ordered at that time. Yesterday was pick-up day.

After a brief wresting match the hearing aids were in! (The part that goes into the ear was not made correctly. It was supposed to be a softer, squishier plastic so they are being reordered. We'll use these for the time being.)

You could have knocked me over with a feather! Ralph had the funniest look on his face like he was hearing everything for the first time. Maybe things just sound different. I don't know, but I was shocked by the way his face lit up AND by the fact that he didn't attempt to remove the hearing aids.

Then Ralph and I went to the sound booth for some testing. He did great! In fact, he turned his head when he heard things that I couldn't hear. Maybe I should get my ears checked?

Pictures soon, as soon as I can swipe Wesley's computer while he is at work!

Saturday, September 12, 2009

Dollars and Sense

(As opposed to dollars and CENTS.)

Today's Down Syndrome Society of Wichita meeting featured financial planner Scott Adams, co-founder of The Special Needs Planning Center. Too bad Ralph is still feeling punk. He would have enjoyed playing in the nursery now that he can walk well!

I knew that I couldn't miss this meeting today. I've been concerned about financial and guardianship issues for awhile, but OH DEAR! I think I have more questions now than before!

Maybe this is a good thing.

All I knew before today was that in order to get services as an adult, my son will have to be broke. It's kind of crazy the way these things work. I understand that there needs to be a system to determine who qualifies for services, but this keeps an entire segment of society in perpetual poverty. Not what I want for MY son. 

There are ways to ensure his quality of lifestyle. (I don't know what they are yet.)

So now that I know a little bit about how much I don't know, I have the SENSE that I need to educate myself. Just like I educated myself about Down Syndrome, heart disease, pulmonary hypertension, I need to educate myself about how to make sure that Ralph has a financially secure future.

Let me encourage you to browse around the website of The Special Needs Planning Center. There are many helpful educational articles and links. Don't wait. Life is so uncertain and your children, special needs or not, are counting on you!

Thursday, September 10, 2009

A (mostly) happy note.

    I have a sick little guy. We spent the better part of last night and this morning in the ER. That's not happy, but I also have perspective. Here is how that goes: 
  • Ralph will keep the nebulizer mask on by himself now! 
  • No needle sticks at the ER. This is huge!
  • Ralph did not get admitted to the hospital.
  • He has a ton of new signs and can tell me what he wants and needs.
  • I have excellent friends, including one that let me borrow an oximeter.

    On a totally happy note, I went shoe shopping for Ralph the other night. Silly me. I went to the store looking for something specific...a high top shoe that laces. There were none. Everything is velcro, and that just won't work for keeping Ralph's little mitts off of his braces. I should have shopped online first.

    I found these sweet little Chuck Taylors at Perfect! $7 cheaper than any other online store and free shipping. Score! I ordered them yesterday. They arrived today! How on earth did they get here so fast?

A sad note.

My aunt passed on last night. She was a unique and loving person...quite young - 53. She was my mother's baby sister. She was my grandma's baby, the youngest of four. She was a mother to my 2 cousins. She was a grandma to two children and a baby that is soon to be born.

I wish that she had the chance to grow old with someone who adored her. I wish that she had the chance watch her children make their mark on the world. I wish she had the chance to see her grandchildren grow. 

However, she had been fighting cancer for many years. She went through some terrible surgeries and treatments. I wouldn't wish that on anyone. The truth of the matter is that she has been liberated. Her earthly chains are gone and she's been set free. 

Sure, I'm sad. But I have hope. I try to get right with Jesus every day and enjoy the people I love while they are here. I highly recommend that to everyone.

Wednesday, September 9, 2009

We have croup!

I'm so thankful that Ralph has not been ill since last Thanksgiving, but I often wonder when it will happen again. Because, it will, right? Yep, we have croup in the house again! It's Ralph.

He's not been "right" for maybe a week. Not eating well (surprise, surprise!), cranky, and naughty. Now I know what's been bothering him. Should I take him to the doctor? 

It bothers me that I don't have an oximeter anymore. I can tell when his fever is serious or if he might be dehydrated by looking at his heart rate. I can tell if the breathing treatments are working by looking at his O2 levels. I feel blind and helpless without that little piece of equipment. Is that sad?

Ralph gets his hearing aids next Monday. I hope he's feeling better by then.

Thursday, September 3, 2009

21 children?

As a young girl I imagined myself with lots of children. In fact, one of my favorite books was (and is!) The Country Bunny and the Little Gold Shoes.

The momma bunny in the book was fairly liberated, considering her 21 children, but somewhere along the way I was impressed that having lots of children was not too cool. Even ten years ago I could not have imagined where I would be today. 

If I had known all the things that would happen, I would do all of it over again. Yes, I would.

But, we still struggle from time to time.  I almost hate to share the hard stuff, because I want to be the sort of person who lifts people up. I'll be real today, OK?

Ralph won't eat. More accurate to say that I cannot predict what he will decide to eat and when he will decide to eat it. He is not too thin and his little thighs are pretty meaty looking lately. But I worry that he is not getting the nutrition he needs to grow properly. You know...up and not out.

Ralph will ALWAYS drink. Milk, water, juice, anything liquid. Is this because of the Lasix? He never seems to get enough to drink. When I set a plate of food in front of him he turns his head and asks for a drink.

This is making me crazy. Sometimes if I can pry his mouth open and get one little bite of food in his mouth he will eat. I don't want to fight with him at every meal though.

I'm going to try to relax and give him a break. I'll give him toddler formula instead of milk and give him a little space at mealtime. He ate a nice lunch after water therapy today. Maybe he needs more physical activity? 

Photos for your viewing pleasure:

Leroy at the Fall sports program at the high school.

Everyone was ready to go, except Jordan. Here is Rose tying his shoes for him!

Ralph and Ruby playing on the floor. He is so tender with her, when he's not smacking her! LOL

Ruby laying on Ralph. She really seems to like him!

The pound she gained over the last two weeks went straight to her cheeks.

Chipper, my football star.

More Ruby. She has one of those faces...full of character.