Sunday, January 31, 2010

Busy Week Ahead

We'd appreciate your prayers for us this week. Sumana has her nerve testing in Rochester at 8 am Tuesday. We plan to visit her sweet baby friend, Giana (she got her VEPTR in October!) Time permitting we'll 'hit' an Indian restaurant for lunch, then finish off the day with the pulmonary clinic. Sumana has a check up with Dr. Voter, including a lung function test. Throw in PT and a haircut and we have a pretty busy week in store.

We enjoyed the company of a new friend this week. She's a 15 year old girl and we're planning to have her at least 2 weekends a month. She's very lively, and everyone loves her. She has had a really rough start to life, so please pray that we can be an encouragement and support to Kathleen.

Sumana is in one of her 'moods' again this week. She is SO 'over' PT and respiratory exercises. I think it was especially hard to do them this weekend with our new friend visiting. Maybe with a new week, she'll be reminded of the need to be as healthy and strong as she can be for surgery.

Thursday, January 28, 2010

ADT/Nerve testing

Our whole family went to see ADT (A Decent Tuesday) in concert last night. This is the band Jeffrey (Sumana's 19 year old brother) plays guitar with. It was really good. I mean it. Last time we saw them it was really NOT good; so this time was a pleasure! They write all their own songs and seem to love what they do. If you know anything about MySpace (which I DON'T), you can check out their spot . . . A Decent Tuesday. They have been playing at least twice a month since October . . .I guess that's why the improvement shows.

I have a friend whose daughter dealt with many spine surgeries. She wrote a note that seems to explain what I have been unable to explain about Sumana's mystery appointment next week:

"It sounds like Sumana might be having a baseline nerve test. Maybe she has had one already since she had spinal surgery but Samantha had it before each spinal operation. She had to wear shorts and a t-shirt and it took about an hour and a half. They glued round receptors on her head, neck, arms and legs and put electricity through the receptors to test her nerve responses through her nerves in her spine. It was like an electric shock only not painful. It showed if her nerves in her hands,arms, feet and legs responded and it gave them an idea of her nerve response pre-op. Then they hook up the same apparatus during the operation to monitor nerve response as they operate to make sure that nerve response remains the same. I was really afraid that it would be a painful test, but Sam ended up laughing because she thought it was cool to see her feet and hands pulse without her control. The worst part is getting the goop they use to attach the electrodes out of her hair!"

So, how 'bout it? Sumana has NOT had this test before, but it should be an interesting addition to her repertoire!

Wednesday, January 27, 2010

How many visitors??

The company that provided my free visitor counter discontinued their service recently. I found another counter and thought I remembered the last count, but realized I was remembering the Caringbridge site, not this blog site. Anyone remember the last count? I'd like to keep an accurate count of visits . . . it's encouraging to Sumana. I know we had about 1000 visits in October . . . Please let me know if you remember any of the latest numbers. Thanks!

No needles required!

Wooo-hooo! No pre-op testing is needed for Sumana's VEPTR lengthening! She is one happy girl! (No needles!!!) She still has the nerve testing and her regular pulmonary follow-up next week, but that's it!

It was quite a 3-ring circus at Dr. Sander's office today. I think he must have been cramming in lots of patients today so he can leave for Haiti tonight. He came in to check Sumana's new x-rays, then left so a tech could come in and do pulse and blood pressure, then his nurse practitioner, Suzanne, came in to do health history and a physical. THEN, Dr. Sanders' resident came in to go over the consent for surgery. Finally, Dr. Sanders came in again with another medical student and gave his dictation note about to Sumana while talking to me. Though it sounds chaotic, I think everything got done rather efficiently.

The bummer, though, was that we didn't get a lot of Dr. Sander's time. I found out most answers of questions from the resident and the NP. This is what is planned for Feb. 10: 1-hour surgery, with 2 small incisions over the lengthening part of the VEPTR and then 1 night in the hospital. Sumana is starting to lean again, which Dr. Sanders says means he should be able to get a good amount of lengthening. He said it also means it's TIME to lengthen the rods.

Dr. Sanders is being very cautious after Sumana's 'performance' following the last surgery. He is concerned about her lungs, primarily, but also said there is a risk of the rods breaking or even ribs breaking during the lengthening process. Yikes!! That would complicate things quite a bit. Please pray that everything goes smoothly and that these complications don't factor in to Sumana's surgery.

As we were leaving, Dr. Sanders asked us to make an apppointment for 3-4 weeks after her surgery. However, one of the secretaries let us know that he will be in Haiti AGAIN in March for TWO WEEKS! So, factor in his time off and our proposed vacation to NC in March and we couldn't get a date til the end of March! So, I asked them to schedule her for two weeks post-op. It's a little soon, but I feel better about that instead of waiting 6+ weeks!

Tuesday, January 26, 2010

2010 Rochester trips commence

I can hardly believe that I haven't made a trip to Rochester with Sumana since November 2!! And, that was to get her H1N1 shot! I think it was mid-Oct. before that! What a wonderful break we've had.

Tomorrow we head up to see Dr. Sanders for Sumana's pre-op appointment. Hopefully, we can get her urine and blood tests done as well. She'll have more x-rays, of course, which Dr. Sanders will use to prepare for her VEPTR expansion.

I got a rather odd phone call today from 'Strong' (the hospital). I still am not totally sure who it was who called. All I know is that Dr. Sanders wanted some baseline nerve testing done. Sumana has to show up next Tuesday morning at 8 am: shorts in tow, no hair conditioners or lotions. The tests will take 1 1/2 hours. (This really has my curiosity up. What could possibly take so long??) However, if it's anything like her sleep study apparatus, most of the time will be taken up by just PUTTING the wires and 'sticky things' on. I guess I should make sure to take my camera!

Sunday, January 24, 2010

Dr. Sanders is off to Haiti!

How cool is this?? Sumana's wonderful orthopedic doctor is going to Haiti this week to help out with whatever surgeries are needed for the children there. His office called last week to reschedule Sumana's appointment for THIS Wednesday. As most of you know, I work really hard to keep all of Sumana's appointments on ONE day, as to limit travel and school disruptions. As you can imagine, my initial reaction was not a happy one!
However, NOW, I don't mind the change at all. In fact, I am sooo very proud of Dr. Sanders. He travels almost every year to Honduras or the Dominican to volunteer and help however he can. This trip, though, will be his first experience in a disaster area. Please pray that he has the strength and courage to deal with whatever he finds there. Please go to 13 Wham to find the written story and video link of the story. The story you're looking for is More Local Doctors leaving for Haiti. Here's my attempt at a link:
Sumana's pre-op appointment is Wednesday. I'm anxious for Dr. Sanders to see how well Sumana is doing and find out what his plans are for this first expansion surgery. Dr. Sanders leaves Wednesday evening for Haiti. I think he's staying about a week. He'll be back just in time to perform Sumana's surgery February 10th. What a busy, committed man! I wish you all could meet him (and his amazing wife, Trisha, for that matter!)

Friday, January 22, 2010

An unexpected Milestone

I'm not sure what made me think of it, but I was figuring out how long Sumana has been here and how long she lived in India. Surprise, Surprise! As of last week, Sumana has been in the US longer than she was in India. That really snuck up on me! She lived almost 5 years and 7 months in India. She has been a part of our family for just over 5 years and 7 months!

She has such a hard time remembering things about India. I find she now retells stories that I have told or makes up stories to go with pictures we have from India. It's really pretty sad. To me, it seems like just a short while ago, but to her it's been the equivalent of her whole lifetime. No wonder things a foggy to her!

Well, it is rewarding to see how far she's come. She didn't speak English and didn't even walk when she joined our family. Now look at her! Just flipping through this blog is a testament to her spirit and love of life. What a blessing she to us!

Tuesday, January 19, 2010

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!

Monday, January 18, 2010

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.

Saturday, January 16, 2010

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!!

Tuesday, January 12, 2010

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!

Sunday, January 10, 2010

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.

Wednesday, January 6, 2010

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!

Friday, January 1, 2010

. . . . 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!