Gratefulness and Contentment

It's another one of those philosophical days for me. They don't come around that often, but when they do they seem to consume me. So 'lucky' you- my blog friends- get to share in my thoughts of the day.

First of all at PT today, Sumana was walking backwards with Miss Kristen guiding her hips and feet (no other assistance). I told her to 'stand up straight' or 'squash the bugs' (one of those reminder cue-things), and she replied, "I'm TRYING, MOMMMMM!!!"

It dawned on me right then and there how hard she DOES try. When we mentioned the event to 'Miss Wanda' as we were leaving, she shared about how her girls' kindergarten teacher 'buried' the word 'can't' at the beginning of the school year. They were taught not to use that word in their classroom (and they DID learn!). That's what I need to be truly grateful for in Sumana. Right from the time she arrived in our family she has tried and tried and tried. She rarely uses the word 'can't'.

This is where a little of the philosophy-stuff comes in . . . where did she learn that? I know a lot of it came from her experience as an orphan. She demanded attention from her caregivers and sometimes that was achieved by impressing them with some new feat. Here at home, her AWANA commander, Pastor McNabb, doesn't allow 'can't', either. Even though Sumana has limitations, he encourages her to do her best at everything from learning Bible verses to trying new games. Same thing with Miss Kristen at PT. Even the characters in our homeschool reading demonstrate the 'I CAN' kind of attitude. Johnny Tremain in 1774 Boston, burned his hand to the point of being crippled. In spite of the life-altering injury, he learned to chop wood, write with his other hand and ride a horse. Nothing like reinforcement from all quarters for our girl!!

Ultimately, I know that at the root of it all, it's a fairly simple answer . . . it's the way God made her. And, the way God is growing her up in Him. I guess no matter where that attitude came from, I want to remember to thank God for it. It certainly makes my job as Sumana's mom, more rewarding and satisfying.

On the theme of contentment, I heard a short thought on the radio on the way home from PT. It was all about the Bible verse that tells us that God will provide all we NEED . . .not what we want or desire or wish for. I couldn't help but be GRATEFUL again, for the way God truly has provided for our needs.

I have seen a couple of Hyundai Entourage and Nissan Quest mini vans on the road over the last few weeks and I must tell you I've had to fight off feeling sad about not getting a new van in 2009. They're so darn good looking! But, on the other hand, we've paid off a lot of bills the last few months and have never lacked food or other true needs. I have to admit that I felt SOOOOO thankful yesterday afternoon when I got the word that our big, green van passed its state inspection with flying colors. I really do like that van. And, I have to admit I am content with it. Through many different events over the last 6-8 months, God has spared us from a car payment and we still have a reliable vehicle. It's a good lesson that God really does know best.

Well, I've rambled long enough. Thanks for hanging in with me and my philosophical day!

Doing my civic duty

As promised, I wrote letters to all of my legislators (state and federal). I re-capped our health insurance woes and suggested a fix that would make 'us' lower income people more a part of our health care costs. It still really bothers me that if I DON'T work, we can get FREE health insurance, but if I work too many hours, we'd have to pay $700 a month. UGH!!!! I suggested more of a sliding fee scale for premiums, similar to what the Child Health Plus programs do. However, I suggested higher premiums and added co-pays than used for the CHP program.

Since I first wrote about our issues, I've come across two other families in the same or similar boat. And it's only been a week or two!! Well, I'll let you know if I hear anything back.

She's Working Hard!!

Today Sumana walked for 6 1/2 minutes on the treadmill (over a 15 minute period). She did one minute of it without holding on (just mom 'spotting' her at her middle). Remember, at PT she walks at a speed of 1.0 mph, this treadmill has her going at 1.5!! We've been increasing her time every day and we're finally to a point that she's starting to get winded a bit! Yee-haw!! It's so good to see her working hard!!

I only wish I had taken pictures a different day at a different time! The beautiful sunshine really messed up the exposure. Well, we'll try another time! At least you can get the idea!!

Treading the mill!!!

Yep . . . she's doing it at her own house now! Thanks to Miss Betty and Mr. Wallace, Sumana has a treadmill to workout on! She's only been on it once so far, but she's doing GREAT! At PT, the treadmill can go REALLY slow . . . she had worked up to 1 mph. The lowest you can set this treadmill is 1.5 mph. A HUGE increase! Miss Kristen noticed right away today that Sumana seemed to be walking quicker.

The benefits should be fantastic! Though she has to hold on while walking at the quicker speed, it really works her muscles and should give her a good cardio workout. We're going to add time each day and see if we can determine a good workout plan for her. Yea!

Sumana is still hanging in there health-wise. She had to wear her mask to church and AWANA this week, but she seemed to be fairly ''OK' with it. (whew!) I hate to be so over-cautious, but surgery's a-comin'.

Here's a great Sumana story: You have to realize that Sumana has consistently been the early riser in the family, (especially compared to me and the teenagers!) Today, it was about 7:45 and she STILL wasn't up. I had to leave at 8:30, so I wanted to get her started on exercises before I left. I opened the door to her room and just walked toward her bed . . . I didn't say anything . . . HONEST! Sumana just rolled over and muttered 'I know, I know, I know!' She sounds like a teenager already, huh? Well, I had to go up two more times before she actually made it downstairs. We only got the cough assist exercises done. But Greig and I had a good chuckle!

Working within the system

Guess what?? I made $26 too much last month and we were told we were no longer eligible for Family Health Plus. Is that CRAZY or what?? We found out that to get the same coverage it would cost almost $700 a month (and that was WITH an income-based program)!!! UGH!!!! So, keep working 36 hours a month and pay $700 a month or quit and pay nothing??? (And let me ASSURE you that I don't make the $20 an hour it would take to pay for health insurance!!)

I am going to take some time this week and send letters to all of my congressman and representatives. I can easily see how millions in our country are going without health insurance. I also am getting a good feel for what 'they' mean by the working poor. With healthcare reform in the news every day, you'd think I might be optimistic about a solution, but let me assure you, I am not!

Here's what I'd like to propose to anyone who will listen: Follow the example already set out for the Child Health Plus Program. Yes, use income guidelines, but as families work themselves out of their income bracket, start charging a monthly premium. In the case of CHP, it goes up to a monthly maximum of $27 per child, I think. Though our family has had Family Health Plus for years, we would have been happy to pay co-pays on doctor visits and prescriptions or a modest monthly premium. It seem crazy that if you make below a certain amount, you can get FREE healthcare, but if you surpass the limit (even by $26) you are TOTALLY ineligible for ANYTHING (except that $700 option!)

This universal healthcare talk makes me sick! (no pun intended, but it works!) Trillions of dollars in cost??? Who's going to pay for it? Where's the bank vault that's holding all this money?? Why the need to give handouts to people who are able and willing to work???!! So many people are buying into this idea of letting the government take care of them. I must admit that subsidized healthcare seems like a better option to me . . . but I suppose if you have insurance through an employer you may not even want tax dollars going into a subsidy. It seems to make sense to me that people should be contributing toward their healthcare costs, maybe using a sliding fee scale. I know I don't know enough about this to probably say too much, but it has hit really close to home this week and it's made me think about it.

Thankfully, because of Sumana's disability, she gets her own insurance through Medicaid. AND, Gretchen and Andrew still qualify for Child Health Plus. So, that leaves, Jeffrey, Greig and me. I reached an agreement with my employer to cut back my hours to stay within the guidelines of the 'system'. I've struggled with the whole idea of integrity through this decision. We feel we're being honest, because I'm not hiding unreported income, but it still feels awkward to have to 'play by their rules'. Sorry for the soapbox speech . . . it's been rather all-consuming this week! For what's worth, I'm going to take these ideas and frustrations and pass them on to the people who are making the rules.

Shhhh . . . it's gone!!!!

I'm sooooo excited to report that for the first time in her life (from what we've witnessed and read in her India medical reports), Sumana had a cold and it went away. I have to give God the huge-est 'THANK YOU". He has been so faithful in Sumana's life in the past and continues to take care of her in ways Greig and I never could.

Isn't it amazing to think it was only 9 months ago that we were making preparations to get her ready for the VEPTR surgery? It was only 4 months ago that she had the actual surgery. I had boldly asked Dr. Sanders in October how soon we could expect to see pulmonary improvement. Since she had just recouped from pneumonia, he was very cautious with his answer. He predicted some gradual improvement over time, but no remarkable improvement for about a year. I consider this latest feat quite a remarkable improvement. Many of you know that within 24-48 hours of beginning cold symptoms, Sumana tends to develop pneumonia. I'm back to my hypersensitivity over her, though. We're so close to surgery (about a month!) that I want to give her every chance to be healthy til then. (Back to the mask . . . poor Sumana!!)

We're also going to go 'full tilt' with her exercises. A friend is giving us a treadmill and we're going to add that to her mix of PT, OT and respiratory exercises. She's not particularly excited, but her mom is! It's ANOTHER thing on my plate (more prodding!), but I really think it'll strengthen her physically and cardiovascularly. Once we get her set up, I'll share pics. Speaking of pictures . . . check out the silly pictures Gretchen took of Sumana and her cousin Lily!

. . . . and a Happy New Year!

Well, time has flown again and I have neglected my blog duties. Apologies to one and all! I guess my main excuse is throwing my back out just before Christmas. I was being impatient with Sumana getting out of the van, so I grabbed her and lifted her out. How many times do I have to do that before I remember that it is NEVER a good idea? Thankfully, Dr. Watson was able to see me at his house Tuesday after Christmas (even though he didn't have any scheduled hours this week!). However, between Wed. Dec. 23 and Tues. Dec. 29th, I was pretty out of it.

Anyway, life continued on with Sumana. She played with her cousin Hannah, from Texas on Monday before AWANA, then also went to the movies with her the next night. Sumana sang and played boomwhackers at MBC's Christmas Eve service. We had our Christmas Eve get together with my family on Wednesday before Christmas. Then, we had Christmas with the Dorman clan at noontime on Christmas. Check out the picture from our house of Sumana giving Jeffrey a hug. Ahhhhhh . . . .

Sumana, Andrew, Greig and I just stayed home for New Year's Eve. We had lots and lots of food (Sumana said, 'Thanks, Mom, for making all this junk food'!!!???). We played games (check out the pic of Sumana playing Star Wars Monopoly) and watched movies. Very quiet, but very fun!

We were so sad to see the Owen family leave. It was so much fun to have them around. I certainly hope we can make our way to Houston some day. It's wonderful to have family who are also friends! By the way, after being healthy since mid-October, Sumana has a case of the sniffles. Usually this means pneumonia within 24 hours, but so far it's been about 48 hours and no serious effects. We've upped the cough assist to twice a day, and if she starts to cough at all (on her own!) we'll start up the albuterol, too. We'll keep you posted. She's on the home stretch for her expansion surgery in February. It would be fantastic if she could stay healthy til then!!

So, after all that, we wish you all a Merry Christmas and a Happy New Year, too!