Saturday, October 31, 2009

Pumpkins and Theology!

Another first for Sumana: carving pumpkins. Of course, it was the cleaning out of the pumpkin that she attempted. I tried the carving part. What a bummer, though, we had no sharp knives in the house. Her pumpkin is one of the homeliest one's I've ever seen! But now she knows about carving pumpkins for Halloween.

Tonight we went to Crosswinds for the evening service. I'm soooo glad we went. The new pastor, Joe Roberts, shared a really challenging message. I've always struggled with the idea that Christianity seems to tell people, " You've messed up. You need to get right with God and get your ticket to heaven." That's it. Joe quoted a source that really resonated with Andrew and me. He said this view is like an item that has a bar code. Once it's scanned, 'Blip,' it's good to go. Is that all there is to Christianity? 'Blip' . . .you're good to go????

Joe shared God's original plan, His dream, for this world. He started in Genesis. God created the world and the things in it for us to care for. He had a plan, an order so that everything would exist in harmony. Jump ahead to Revelation. God makes His throne among His people, here on earth. His dream is fulfilled. All the stuff in between Genesis and Revelation is how we messed up and God had to fix it; how He had to make a plan to get us back to His original dream.

Now I don't want you to get me wrong. Forgiveness is still important. Trusting in the work of Christ on the cross is still paramount. However, focusing on that and making that one-time decision the bulk of your faith is selling yourself (and God) short. He wants us to LIVE life here and now . . . to find fulfillment in what we do now . . . not just floating through life waiting to get to the 'end'. He wants to use us NOW and throughout eternity.

I was really jazzed to hear this view of Christianity. It makes so much sense. It still addresses the need for Christ to make us right with God, but it also addresses the needs we face everyday and the needs of the world around us. Once we are made right with God, He can use us and we can impact our world for Him. Please check out Joe's message for yourself at

PS-11/1/09- I just looked at my notes from last time Joe spoke. The bottom line: it's not just about accepting Jesus . . . it's about following Him.

Friday, October 30, 2009

Yes . . . we're still here!

I can't get over how fast time flies! We really are 'back in the swing' of things with school and therapy. However, I had to throw a new job into the mix! We stopped by the library last Thursday to get a couple of books for school. When I checked out, I saw a posting for a part-time library clerk. Well one week later, I started! It's only 10 hours a week, so it shouldn't be too difficult to work in. However, training is another issue! I'm working a lot of hours next week and some are during our school hours, so guess what?? We're having school on Saturday this week (and maybe next!).

On the Sumana front, she has me worried a bit. She didn't have the stamina to do the treadmill very well at PT yesterday. This whole week she's complained about her exercises being too hard. And, she's coughed and sneezed a few times. Ordinarily, one might think . . .' big deal.' But, this is Sumana we're talking about. In the past, weakness or cough immediately preceded sickness. Please continue to pray for her health. BTW, she still hasn't gotten the H1N1 vaccine. I've found the mist available, but she needs to have the injection because of her compromised lung function. I saw the newspaper yesterday and H1N1 has arrived in our area, so I'm really bummed she hasn't gotten the shot yet. I'm calling her lung doctor today to see if she has any ideas of where to find the vaccine.

Monday, October 26, 2009

Fall leaves

Well, Sumana and I get an awful lot of inspiration from my cousin Megan's blog. (She's the one with triplet 2 year-olds and an almost 1 year old). We try to check her blog every morning. Today Sumana saw pictures of the kids playing in the leaves. 'Why are they laying in the leaves, Mom?' Ummmm . . . they're playing in the leaves. You've played in the leaves before haven't you?? 'Nope!'

So, today Sumana played in the leaves. I raked a big pile and told her to back up and fall into it. She looked at me like I was crazy and carefully put down her crutches, got on her hands and knees and THEN backed into the pile and sat. My good friend had just called me from Alaska, so I just left her there thinking she would figure out how to play in the leaves. But no. She just sat there looking at me, wondering what all the fuss was about leaves!

When I got off the phone, I grabbed a bunch of leaves and dropped them on her head. 'Mom, what are you doing??!!!!' We're PLAYING in the leaves, Sumana!!! 'But my hair is getting dirty!'

Oh, brother! She lasted about 20 minutes and was VERY ready to be 'done'. I'm sure it would have been more fun with other younger kids, but it was such a nice day . . . .I was enjoying it!

It's times like these that I realize yet another thing that she missed out on by coming to our family as a 5 1/2 year old. I have tried to 'catch her up' on nursery rhymes and songs, but we always come across one she' doesn't know, or has forgotten. I makes me sad to realize how much she's missed. I know we've done our best to expose her to lots of things, even though they often seem too 'young' for her. But, it is sad to know that a lot of those precious preschool moments are lost forever. Hey, here's a good lesson for all you young-up-start parents!! Play in the leaves with your kids! Read them nursery rhymes like crazy! Sing them stupid songs! They'll be 5 before you know it and ready to be 'grown up'!!! (Please catch the sarcasm in my tone! Parenting is tough work . . . I wouldn't want to repeat the preschool years!!!)

This last picture is at AWANA Bible-ween night. Sumana is the wee little man in the sycamore tree . . . Zaccheus! Check out the happenin' mustache. She looks wayyyy too Hispanic, though!

Saturday, October 24, 2009

Books, books, books!

Well, we're getting into a routine (finally!) and that means books are flying around our house! Of course, Jeffrey and Gretchen have their loads of textbooks for college, but we (Andrew, Sumana and I) are also back to enjoying our 'read-alouds' for school. So far, we've read Peace Child by Don Richardson. What an incredible story of a missionary who was the FIRST to live among the Sawi tribe in Papua New Guinea. The Sawi were headhunting cannibals and let me tell you, I skipped around A LOT doing some real-time editing. Yuck!!!

Anyway, the missionary struggled to find ANY connection, any analogy between the tribe's beliefs and customs and Christianity. He was about to give up ever finding a connection when he witnessed the giving of a 'Peace Child' as an assurance of good will between tribes. Each warring tribe would surrender a 'Peace Child' to the other and as long as the Peace Child lived, there would be peace between the tribes. However, if the child died, war would start all over again. Richardson was able to share the hope of the once-for-all Peace Child, Jesus. From that point on, the tribe changed for the better and influenced tribes in the entire region for Christ. What an inspiring story!

Another story we started recently is Walk the World's Rim, by Betty Baker. Here's another incredible story of perseverance and maybe even God's grace. It's a work of historical fiction following the story of Esteban, a slave who came with the Spaniards who 'discovered' Florida in the 1500s. Though nearly 600 men perished, Esteban and 3 others pushed west from Florida, trying to make it to the Spanish colony in Mexico City. Everywhere they went, they prayed for the sick and did all they could to help restore health. Since they had come from the east and healed many, the Indians called them 'gods-from-where-the-sun rises'. Currently, we're at the point that an Indian boy joins their trek to Mexico. His father, the chief, wants his son to get to know the God of these men. The boy, himself, admires the men and hopes to learn more about their God.

Jeffrey, some of his friends and I have been racing each other through a series of books. It's been funny to see who pulls ahead and who catches up; who gets the next book first. When I was in the hospital with Sumana I read so much that I had to get Greig to 'steal' back a book from one of Jeffrey's friends, so I could keep moving through the series. Since being home, my reading has slowed WAYYYY down, so I had his friend on my case to finish the book so he could do the same!!!

Well, Sumana is a reading maniac. Every night she takes books to bed with her. American girl stories, Berenstein Bears, Arthur and of course Amelia Bedelia. For school she has to read shorter chapter books. It's still quite a challenge for her, so I read a page then she reads a page. Greig mentioned this week how far she's come in a year. It was soooo good to hear that! I think I'm too close to the situation to see the improvements. Teaching kids to read has always been my biggest challenge. I'm glad Sumana's the last one! I think teaching another one would send me to the loony bin for good!!!

PS-- Praise God for the good word we've been hearing about Giana. She was on room air and alert the evening after surgery. I guess she's struggling with elevated heart rate, fever and rash. However, it sounds like she's doing great and is signing to her family. Please continue to pray. Here's the latest link to her site:

Tuesday, October 20, 2009

No Rochester appointments til February!!

It's true! It's true!! No more trips to Rochester til February! Sumana saw Dr. Sanders yesterday and he's very pleased with her progress. He said he was going to ask his secretary to start working on scheduling Sumana's first lengthening for 4-5 months from now. Yea!!

So here's the scoop: she'll have a pre-op appointment in February to get up-to-date x-rays. Then she'll go in for surgery. Dr. Sanders says there will be 2 incisions at the adjustment sites. each rod will be lengthened, then they'll 'close her up'. Because of the 'excitement' she caused at her initial VEPTR surgery, Dr. Sanders is going to reserve a PICU room and he wants her to spend the night after the lengthening. If she doesn't need the PICU room, he'll move her to regular 'floor' room, just to monitor her overnight. Since the surgery is usually done on an outpatient basis, I'm pleased with his cautionary approach. Sumana is not the 'average' kid (in more ways than one!!)

So, we also threw in a brace check up and PT for good measure. In between appointments we met some homeschooling friends at the Strong Museum of Play. Unfortunately, I forgot my camera (AGAIN!!) I'm sooo bummed! Sumana had such a blast. She LOVED shopping at the mini-Wegmans and checking herself out (barcode beeper and paper receipt included!!) She also LOVED the Berenstein Bear section. She reads those books EVERY night before she goes to sleep. I often have to take them away from her so she'll go to sleep! She got to do leaf rubbings, egg processing, jumping contests and played a make-shift xylophone. All in the Berenstein bear area.

Well, a couple of prayer requests. In the midst of our running around yesterday, I was not feeling well. I've been fighting something off on on for days now. Even today I'm not feeling much better. It's a low-grade fever, cough, sore throat . . . yuck! Just what Sumana doesn't need! So, pray that she stays healthy and I get better FAST!

Also, please pray for our little friend, Giana. She has her VEPTR surgery on Thursday. She's got lots of complicating factors, beside the fact that she's only 15 months old! Dr. Sanders will be doing her surgery as well as Dr. Campbell (the c0-inventor of the VEPTR). She and Sumana have a special bond . . . two very special little girls. I know the Bisnett family would treasure your prayers. Here's their caringbridge site: or

Sunday, October 18, 2009

Last Rochester appointment????

Oooooo. I'm feeling the excitement. OK, maybe it's a bit premature; but I can't help it. Tomorrow Sumana has her follow-up back appointment with Dr. Sanders. As of today, tomorrow is the last scheduled appointment in Rochester til February! As you may remember, I crammed every conceivable appointment in BEFORE Sumana's VEPTR surgery so that we could plan to stay home and recuperate. Well, so far the 'staying home' hasn't materialized. With her pneumonia, she has been going to Rochester almost weekly since the middle of September. So, we're looking forward to staying home more.

Sumana has a bunch of questions for Dr. Sanders. 'Will my expansions really be 'in and out'?" (outpatient) 'How do the rods make my back straight?' 'When will my lungs get stronger?' Etc., etc.!

So, we see Miss Kristina at 9 to check Sumana's braces. Then, we head over to the Strong Museum to meet some homeschooling friends. The teenage boys are already planning to get lost in the new comic section of the museum. Sumana is hoping the Berenstain Bears are still there. Me? I could sit and watch the fish all morning! We'll leave Andrew at the museum with our friends and Sumana and I will head back to see Dr. Sanders. Time permitting, we'll get to spend another hour at the museum before heading to PT.

Oh, yeah. I forgot to mention that we're dropping off the van to get some repairs done BEFORE we head to Rochester. So, at least this time, we'll be putting miles on a loaner instead of our vehicle.

Wednesday, October 14, 2009

No new van

Well, it's pretty final now. We're not only not getting the Entourage, we're not getting ANY vehicle. Here we were approved to buy a 2009 van in July, now we can't get approved to buy a 2007 van!! We thought the original approval was still in effect, but alas, the 60 window has closed (even though a bank rep called us 2 weeks ago to check our status on the loan . . .???) Anyway, we had to reapply today and were rejected because we refinanced our house in September. It's kind of a bummer to be penalized for making wise choices. Oh, well! It's better to have our house paid off in 10 years with no van, than to pay longer on a mortgage AND make a van payment. My mom made a wise comment, "Pay yourself, instead of the bank." So, that's what I'm going to do. Save up Sumana's SSI and next year, we can try again.

Meanwhile, Andrew and I headed out and cleaned the Astro van interior. Tomorrow I'm getting it washed and waxed. Monday we'll have it in the shop to get some repairs done, then we should be good to go, (well, I suppose we should check the tires out . . .) I'm convinced that God is behind this whole matter and even though it's disappointing, we're ok with it. We love our big, green van!

As I've mentioned, Monday is Sumana's last scheduled appointment in Rochester til February. We're trying to make plans to meet some friends at the Strong Museum of Play. I can't wait!! We go at least once a year and it doesn't matter the age of the child, they ALL have fun! (Last year we took Andrew and Shantell . . . then 12 . . . they had such a blast checking out the collectible toys and grossology exhibit).

Please continue to pray for Sumana's health. There is soooo much 'yuck' out there, I almost hate to take her out of the house. I also am fighting with our teens about them getting flu and H1N1 shots. Though the flu is rampant at a nearby college and not at their's yet, it'll come. We can't afford to have it in our house. It's another lesson of 'it's not about you'. I'll keep you posted on our progress!

Tuesday, October 13, 2009

Love 'em, hate 'em

Well, you haven't heard a lot from us lately: 1) There hasn't been much to report about Sumana. She has been healthy (praise God!) and getting into her routine of school and PT/OT. 2) I've been having major computer issues lately. Even as I started typing this entry, our antivirus program shut me down.

I can't tell you how much I appreciate having a computer. How much it helps with schooling, researching medical stuff and cars, banking, how it keeps me connected with my friends and family . . . . But, as much as a love it for these reasons, I hate it more (I think). It sucks time away from our teenagers (therein lies a daily battle to reign them in). It subjects us to all kinds of garbage that we don't even ask for! This has been my battle lately. I can't google something, click on a site and expect to go there. NO! I get taken some random place, from health and beauty to sports to morally questionable sites, AND (get this) I got taken to a Jesus Loves you site. Everyone has their hand in the pie. And, I don't even ask for the stuff! It just pops up when I'm trying to do something else! UGH!!!

Anyway, enough griping. Just wanted you to know we're still here, doing well. Our last Rochester appointment is on Monday! I can hardly stand it! To have a week without a trip to Rochester???? I'm hoping to get used to that! BTW, we'll be driving a new-to-us van to the appointment next week. If all goes well, we'll be the proud owners of a 2007 Hyundai Entourage tomorrow. I'll try to post pictures . . . if my computer will let me! LOL!

Wednesday, October 7, 2009


'We've got to get those muscles cookin'!' (by Miss Kristen at PT) Sumana: Huh? (What's for dinner?)

Sumana to Dr. Voter regarding the cough assist machine: 'You know how you said the machine would force air in and then suck it out? It kinda makes me want to cough.' (Thus, 'cough assist') Dr. Voter told her to go with it!

Sumana doing her Explode the Code: 'Mom, look. Church starts with a ch and ends with a ch.' Mom says, 'What's missing?' Sumana, ' U-R' . . . pause . . . giggles . . . oh, YOU ARE!! Followed by hysterical laughter. Boy, is she easily amused! ( just like her mom, huh?)

I know there are more treasures to record, but those are the ones that come to mind. Today we actually stayed home all day! I got caught up on some cleaning and laundry and Sumana and Andrew got a TON of school work done. Tomorrow is pretty quiet, too, just PT and guitar for Andrew in the afternoon.

Tuesday, October 6, 2009

Wedding Re-Cap Part 2

Well, after the wedding and pictures we headed out to the reception. Sumana was a dancing maniac! I could tell she wanted to join in but didn't know how. So, I took her hands and took her out on the dance floor. What a riot! She had soooo much fun! Her cousins Josh and Kylie helped her a lot on the dance floor, too! (check out the pictures!)
We had a wonderful time celebrating Jon and Charlotte and visiting with family. Greig has such a wonderful extended family; it was nice to catch up with them. We had a fun time at breakfast with them on Sunday.
After packing up, we headed to the big town of Tatamy! What a riot as we turned on to Main Street and saw nothing but cornfields on either side of the 'street'!!!! Our special college friends Phil and Jennie Tielmann have lived there for 6 years, but this was our first trip to their home. (We usually meet them for a weekend of camping half way between our homes!)
We had a yummy lunch with them (including their 7 kids). Our kids have established a unique bond with their kids over the years of camping and facebooking! Sumana really hit it off with Leah.

We had a rather uneventful trip home (thank goodness!!). Monday had us back into the school, PT/OT and AWANA routine. However, today had us out of our routine with a trip to Rochester. Sumana finally got her new braces adjusted (we had to cancel her last appointment because she had pneumonia). We then tried out a new Indian restaurant: Mysore Woodlands. It was REAL south Indian food like I haven't had since India! WOW! Did that take us back! We had our fill of Masala dosa, idli and sambhar, and lots of other wonderful goodies. Yum!! We're going back in 2 weeks after we see Dr. Sanders! (It's only 5 minutes from the hospital!)

Sumana also saw Dr. Voter today (pulmonology). It was VERY disappointing news. Sumana is basically back to where she was BEFORE we started the cough assist. So, we're going to continue the daily albuterol and cough assist until further notice. Hopefully, when she returns in February we will see lots of improvement. Our big goal is to keep her healthy thru the Fall and Winter. (BTW, on the way home, she got her seasonal flu shot at her primary doctor's office. She goes back in a couple of weeks for the H1N1).

There you have it! You're up-to-date! (I think!) Sorry this was such a LONG post. Here's one final picture of Sumana with her Grampy and Uncle Richard:

Monday, October 5, 2009

Wedding Re-cap!

Wow! How time flies when you're having fun! There's soooo much to catch you up on, it may take me a few entries to get thru it all! Friday's travelling went pretty well. There wasn't as much construction in NY as I expected. However, PA didn't disappoint. There were a few spots merging into one lane that slowed us waaayyy down. Then, when we arrived at the hotel and tried to find our way to the church we hit rush hour . . . in corn/wine country . . . . go figure! (BTW, Sumana traveled well and didn't need any Motrin til we were almost 'there'--Allentown).

Anyway, the rehearsal was still going on when we got there. Afterward, we headed in to nice restaurant for the rehearsal dinner. There were probably 30-40 people there, but it was mainly Charlotte and Jon's family, so it was a nice setting to visit and relax. AND, of course eat great food! Sumana got a children's meal as soon as we got there. She ate a hamburger, applesauce and fries before we finished our salad course! So, of course she had to sample our food, too!

She slept great at the hotel and when we got up, she had to get right to her morning exercises. It was a little frustrating knowing that a yummy breakfast was WAITING for us downstairs, but she hung in there and got her work done first. Then, she was rewarded with french toast and yogurt. Yummm!! AND, of course, lots of family to visit with!

We managed to squeeze in a trip to the Goodwill store and Ross (our favorite discount clothing store . . . why can't they make a store in NY????) Gretchen made out well finding jeans and shirts. Then, we grabbed a quick BK lunch and headed back to the hotel to get dressed for the wedding. After all my fretting about cool rainy weather, it was a BEAUTIFUL day . . . sunny and around 70!

Greig was the photographer, so we had almost 1 1/2 hours to 'kill' before the ceremony started. Jeffrey was occupied as video guy and Gretchen wanted to be 'in' on all the action, so Andrew, Sumana and I headed off to a local farmer's market. It was like a mini-Windmill (for those of you from OUR area). We were all dressed up and stood out like crazy (especially me with my dressy clothes and clunker brown shoes!!) But, we found lots of fresh veggies CHEAP! I treated the kids to fresh Pennsylvania Dutch pretzels. Andrew's was a steak and cheese pretzel(???!!!)

When we got back to the church we grabbed a few quick photos and then were seated. What a beautiful ceremony! It was held in a small stone chapel . . . GORGEOUS! Jeffrey and Greig were 'working' and Sumana 'had' to sit with Grampy and Grammy, so Andrew and Gretchen and I ended up together. It was fun to watch their excitement as their cousins participated in the ceremony!

Thursday, October 1, 2009

Mom's Day Out

Well, Sumana and I have been getting up earlier than usual in order to get all of her breathing and PT/OT exercises in before school. She's not lovin' it, but at least she's pretty cooperative. Today we had to finish school early because I had an appointment in Rochester. Gretchen and Andrew helped 'hold down the fort.' Gretchen even did the transporting for PT and guitar lessons today. Yee-hawww!! It's nice to have another driver in the house!

So, since all the home bases were covered, I was able to run errands and generally just goof off for the afternoon. It was WAY too much fun! I happened to take a dress back to a store for an exchange and it was so quiet that I had the undivided attention of 3 saleswomen! It was fun trying on things I might not have thought of on my own. I actually exchanged the dress for a really sparkly, trendy top that one of the saleswomen found for me. Woo-hoo!

One real bummer today is that I had to say goodbye to another friend. First, one of my best friends moves to Alaska, now another one leaves for Virginia on Saturday. We were able to visit Gina and her family last year in Oklahoma as part of our college road trip. Her family rather unexpectedly moved 'home' in August. So, really the past 2 months have been a 'bonus'. Nevertheless, it stinks to have to say goodbye. At least Virginia is a whole lot closer than Oklahoma!!

Tomorrow we pack up and head to Allentown, PA for Greig's nephew's wedding. Packing the clothes is no big deal. Packing all of Sumana's respiratory stuff . . . that's another story. I really need to take everything she needs NOW and anything she might need if she starts to get a cold. UGHHHHH!!!!

I'll try to get lots of new pictures of Sumana all dressed up with her family. She really looks so much different since her surgery. It's fun to show it off in pictures. (If I can just remember to pack the camera!)