Sunday, December 20, 2009

Health updates and Traveling Dinners



As a quick update, my dad had a good doctor's report last week. He is continuing to make progress as he re-coups from the endocarditis. He is down to one IV a day for the next two weeks. Dad has another echocardiogram on Tuesday and sees his cardiologist. My Grandma Dorman had a stress test last week and passed it with flying colors. So, I guess there will be further tests concerning her esophagus down the road. She continues to improve after her fall over a month ago.

Today was our annual Dorman traveling dinner. It was a day full of eating, eating and more eating. My cousins from Texas were up with their 4 kids AND my cousins from Rochester brought their two girls down for the festivities. We started with appetizers at Uncle Charley and Aunt Melanie's house. Then, soup at my mom and dad's. Since there were so many of us, the next course (dinner) was at the Middlesex Baptist Church. Finally, we had dessert at Grandma Dorman's house. It was wayyyyy yummy and sooooo fun to see all the kids playing together.

Between soup and dinner, Sumana, Gretchen and I went to my niece, Daisy's pre-school Christmas program. As we walked in, a little voice nearly screamed, "Sumana!!!". It was our little friend, Crystal. She is in Daisy's class. Check out the pictures . . . how cute! Daisy just stood with a quiet, pleasant look on her face, while Crystal's motions were bigger than life and she just oozed all over the stage. What a contrast in personalities, huh???

Gotta catch up with the news!






As always, I'm backlogged with news. I think I'll try to make several 'smallish' entries instead of one mammoth one.

I finally took some pictures of Sumana on the treadmill. She walks with no crutches and her PT supports her hips to remind her to keep them in line. The other picture is of her on the Wii balance board. Her balance is really poor, but it is easy to see improvment as she practices week to week.

She'll have PT Tuesday this week and then 'off' for Christmas. Also, as a schedule update, Sumana's first expansion surgery was changed to Wednesday, Feb. 10th.

Saturday, Sumana attended a friend's 5th birthday party. It was a tea party and boy did they have fun! Sumana doesn't do a lot of things with kids her age except at AWANA, so this was a real treat!

Wednesday, December 16, 2009

Ring, Ring those bells!


Well, we were inside and no ringing was allowed. Sumana had a little sign that said, "Ring, Ring, Ring" so we were exuding the thought if not the sound! The Wood Library (where I now work), sponsored a day of 'bell-ringing' for the Salvation Army Red Kettle Drive. My new friend, Barbara Henry, joined us for an hour in the entrance to Tops.
The older kids were planning to go caroling tonight and I was feeling guilty about not wanting to deal with taking Sumana (in and out of cars, up and over uneven lawns, navigating slippery driveways, getting there just in time to sing 'We wish you a Merry Christmas' and then trekking back to the van to do it all over again!) Well, Sumana was feeling the same way about caroling and she was glad to have her OWN outing where she was relatively warm and could sit down if she needed to.
She was so excited and kept flashing her million dollar smile. We had so many people look at her and just be drawn to put something in the kettle. One woman said, "I already sent a check in to support the Salvation Army, but I can't walk past that smile without giving something more!" Sumana was our 'secret weapon' . . . I bet our hour brought in the most money!!! (We'll never know!! LOL!!)

Please pray for Grandma Dorman

I just checked my e-mail this morning and got word that my mom's mom was admitted to the hospital last night. I guess she was having crushing chest pains. Her primary doctor was worried about a possible heart attack, but the cardiologist (the same one that is seeing my dad), thinks it may be 'just' heartburn. At any rate, she has a stress test today and I guess they'll go from there.

I haven't mentioned in the blog, but about a month ago Grandma (86 years old) lost her balance in her garage and fell, hitting the back of her head. She got a pretty 'good' concussion out of the deal. Grandma hasn't been feeling very well since then, though she has been improving. She's always been healthy and active, so this setback has been trying for her. Please pray for wisdom for the doctors to diagnose what's going on and for her strength to come back. Thanks so much!

Tuesday, December 15, 2009

Another week has passed???!!

Sorry it's been soooo long again! That certainly does NOT indicate that nothing has been happening in the Holman household! Thankfully, everyone has been healthy . . . but VERY busy!



As an update, my dad is doing better. He actually DOES do the infusions himself (wow!) Today he did grocery shopping with my mom and went for a short walk up their road. Considering all he's been through, I can see forward progress. He sees his primary doctor tomorrow and next week he sees the cardiologist and has another echocardiogram.


Sumana has been busy doing her OT and PT exercises and schoolwork. She is not only getting stronger physically, but is improving by leaps and bounds in her reading, writing and 'rithmatic! She gave a handwritten note to Miss Kristen today and received some pretty high praise for her improved handwriting. (Thanks, Miss Kristen!!!)


Sunday, we all (except Jeffrey), went to Gretchen's Christmas choral concert. It was soooo beautiful! There was a mix of Christmas standards, jazz and her group did a selection of Latin and Spanish classical Christmas music. I don't think I've heard such beautiful choral pieces since Greig and I sang in our college choir!

I keep forgetting my camera . . . even when I put it right next to my purse!! I'm REALLY going to try to get some pictures for you over the next few days. There is lots happening and I'd love to have you share it with us!

Tuesday, December 8, 2009

Lots of News!

Well, first of all, my dad is home. He has 4 infusions every day for 2 weeks and it sounds like he does it himself (I'm impressed!) He sees his primary doctor next week and then the cardiologist on the 18th for another echocardiogram. I think the doctors will re-assess the leakage from the aortic valve and make plans from there. So, we'd appreciate your continued prayers.

Sumana has had 2 VERY exciting days. Last night she was awarded The Clubber of the Month for November at her AWANA club. She was sooooo very proud. She has been working hard at learning Bible verses and completing various projects to complete her second Truth and Training book by the end of the school year.

Today she saw Dr. Hollister for her 11 year check up. Except for her poor vision, she's doing really well. (If you remember back to August, the eye doctor said that Sumana's optic nerve damage is such that her eye does not respond to correction). Anyway, the good news is that the growth she gained through the VEPTR surgery has gotten her closer to the 'normal' growth curve. She has always measured 4.5-6 'blocks' below the normal growth curve for girls her age. NOW, she is only 3.5 blocks below. An impressive improvement!

More good news (and a bit sad, too): Sumana has reached all of her goals for Occupational Therapy and has been discharged until her next surgery, (at which point we'll re-evaluate her need for any further OT). Mr. Darryl has worked really well with Sumana. He's had a balance of challenging her and teasing her that makes her work really hard. She can now lift a drinking glass and drink without her hand and arm shaking. She also can put on and take off long sleeved shirts independently. (She was not able to do these things after surgery). We are very grateful to Mr. Darryl for his attention to Sumana's weaknesses and his help in giving her the exercises she needed to regain her strength. Way to go Sumana and Mr. Darryl!

Monday, December 7, 2009

Update on my dad

Bummer of bummers. Dad is still in the hospital tonight. He had a test today on his heart and the cardiologist could see 'moderate damage' to the aortic valve ( I think I have that story right . . . my mom just called with the info). So, even though he's had the antibiotic, the bacteria has already done the damage. Unfortunately, my dad may be facing heart surgery down the road . . . and lots of doctor appointments. UGH!

The plan is to meet with the county health nurse tomorrow morning and get a routine figured out for his daily iv injections. (maybe my mom will be getting help???? I didn't quite catch that info!) Thanks for your continued prayers!

Williams Christmas


Sunday we had our Williams family Christmas brunch at my sister's house. There were a dozen kids ages 1-19! It was especially fun to see my cousin's 4 kids (2 year old triplets and a 1 year old girl). Oh my goodness . . . were they ever busy and cute as anything! We've been doing Christmas brunch with my dad's family for so long, I can't remember when we DIDN'T do it!! We have a traditional family menu: quiche, ham balls, fruit, French breakfast donuts, and other goodies!


As expected, Sumana was in her glory with all the cousins to play with. She sat next to Brady for brunch and then played Play-dough with the kids, making Christmas cookies of all colors! The picture at the top is of her playing with Eli.
Meanwhile, my dad was stuck in the hospital. He was admitted to receive antibiotics intravenously for endocarditis (basically, a heart infection). He is supposed to come home this afternoon. The bummer is that he has to have DAILY IV injections of antibiotics for 4 WEEKS! YIKES! Poor, mom! (and poor, dad, of course!) He still has his great sense of humor, but I know he can't wait to get out of the hospital. Please pray that the infection will clear and the heart valves will stop leaking so he won't need surgery. Thank you sooooo much!

Wednesday, December 2, 2009

College Students!

I have not had much luck getting on MY computer lately. Gretchen has been busy trying to get her college work done (and of course, her obsession . . . Facebook). So, today she's at school and I'll try to get a quick post in to catch you up on Sumana.

First of all, we have her first expansion scheduled for February 8! We were able to get all of her annual appointments and check ups scheduled, too, so we only are making ONE trip to Rochester the week before her surgery. Then, it should just be one night in the hospital and home again, home again diggity-dog!

Sumana is continuing to get stronger and stronger. She got word yesterday that she will probably be able to be discharged from Occupational Therapy soon. Yea! She has met all of her post-op goals and has regained (and gained!) new strength in her upper body. Now we'll be back to concentrating on her lower half! She still hopes to walk for Dr. Sanders WITHOUT crutches at her February appointment.

We start our Christmas celebrations this week! Sunday we enjoy 'Christmas' with my Dad's side of the family. It will involve lots of children so Sumana will be in her glory! It actually will be nice to start early with the celebrations . . . we have them spread out all month!

Thursday, November 26, 2009

Birthday Happenings!







Sumana had quite a fun weekend. We visited our little friend Crystal on Saturday and then went to Papa and Nana's. Sunday, Miss Jean had cupcakes for Sumana at Sunday School. Our neighbor, Mr. McCann made the trip up from Florida for hunting season, so he was on hand for her birthday dinner. As promised: chicken, mashed potatoes and gravy! And then, of course, chocolate cake with chocolate frosting and M&Ms!

Monday, cousins Ruby, Lily and Daisy came over for a doll tea party. This was probably the highlight of her celebration. She absolutely LOVES her cousins! The girly giggles were just tooooo funny! (What a switch from a couple weeks ago when Jeffrey had his GUY friends over for his birthday!)

Check out some of the fun pictures! Look at the humongous cupcake Sumana's PT, Miss Kristen made for her! Yummy!


Friday, November 20, 2009

Two days and counting!

Sumana is sooo excited about turning 11. She is having one of her favorite dinners on Sunday (chicken and mashed potatoes and gravy) and then opening presents. She's having her cousins over Monday afternoon for a doll tea party, then AWANA. It should be fun, but I'm tired already!!! LOL!

We FINALLY heard back about a possible surgery date in February. Unfortunately, I was at work and missed the call. UGH!! However, it looks like Dr. Sander's schedule is pretty wide open in February, so we can basically choose the date we want. This is for Sumana's first VEPTR expansion . . . her first 'cranking up'! I'll try to finalize things with the secretary on Monday. She has all of her annual check ups with her specialists in February, so it'll be helpful to have the surgery date set.

Monday, November 16, 2009

No computer . . . AGAIN!

I've got to say it again . . . 'Computers. You either love 'em or hate 'em.' Right now I 'hate 'em'. We've had more issues. So, that's why you haven't heard from us. However, thankfully, everyone seems to be healthier, so that's good news.

Saturday, Andrew, Sumana and I went to Jeffrey's band concert. His band, 'A Decent Tuesday,' played in Naples. I was so proud! The band writes their own songs and I must say, their music is really developing as time goes by. It was loud, of course, but the band had lots of energy. I was afraid the noise would really bother Sumana, but she really liked it!!

Sunday, Sumana sang in church with her kids choir. They did such a good job! It was a song that had lots of hand motions. Sumana really kept up with the motions AND kept her balance!! (falling over would have been a bummer!!)

This week appears to be quieter. We're busy planning Sumana's 11th birthday party, though. She has tons of ideas, but we're probably scaling WAY down! The easy part is chocolate cake, chocolate frosting and M&Ms! Yum!!! I'm glad she shares my taste for chocolate!!

Wednesday, November 11, 2009

Oh, well . . .

Andrew DOES (or DID) have H1N1. The rapid culture came back negative on Saturday, but the longer culture came back today POSITIVE! UGH!!! If we had known Saturday, Gretchen and Jeffrey could have gotten Tami-flu, but since they've had symptoms since Friday/Saturday, it's too late to treat. Gretchen is still hanging in there pretty well. Jeffrey is, too, though his mom doesn't like the way his eyes look!

I am sooooo tired of wiping and spraying and cleaning, but I continued again today. Also, I've lost my main dish washer and laundry helper, so I've added those chores to my 'routine'(do you hear the violins????). Woe is me . . . carer of the sickos!

Sorry for the whining! Last night I really did not feel very well and this afternoon I'm still not convinced how I'm doing. I really hope I can ward off the sickness; I have my new work schedule and am supposed to work Thursday and Friday. Wipe and clean and spray some more!!! Drink some water and then drink some more! Hey, a friend recommended elderberry juice to shorten the duration of the flu . . . I may have to give that a try!

In the midst of our drama, Sumana continues to do well. She's once again getting stronger and stronger. Her PT, Miss Kristen, and I could really see HUGE improvement in her strength yesterday. Kristen mentioned that the VEPTR placement allows her to use muscles she never was able to use before. How cool is that??? By straightening her back, she will have increased lung capacity and increased muscle control across her back. I still am amazed to see the benefits of the surgery already and look expectantly to the future. God really is good, isn't He??

Monday, November 9, 2009

Now a 'Beginning of the Week Update'

I'm sooooo thankful for the last two warm days. I opened ALL the windows, sprayed disinfectant ALL over the house and cleaned like crazy, wiping door knobs and handles with Clorox wipes. I think I made a dent in the germs. At least I feel good about what got done. Andrew is slowly recovering; I still don't like the sound of his cough . . . maybe we'll re-visit the doctor tomorrow if he's not MUCH better. Meanwhile, Gretchen came home sick from work on Saturday with a nasty cough. She's muddled through the last couple of days and actually went to college today. She doesn't seem any worse tonight, so maybe she'll 'muddle' her way right through the illness.

Good news. Andrew does NOT have H1N1. So, even though he's been one sick puppy, he isn't spreading H1N1 to the rest of us. There's one less worry, huh?

Oh, yeah. Sumana. This is HER blog . . . She's been doing pretty well throughout this sickness phase of our family. She actually is seeming stronger. I wrote a couple weeks ago about how I was concerned about her tiring easily and seeming weak. Last Thursday she walked longer and faster on the treadmill than she ever has. In addition, it was a better quality walk. Since then, she's continued her exercises and tries walking around the house with NO crutches. It's so cute to see her determination kick in when she tries something like that. I still think that aspect of her personality is going to take her far. We all get to sit back and watch the story unfold! You go, girl!

Friday, November 6, 2009

End of the week update

Well, it has been a busy week! I worked 10 hours at the library already and another four tomorrow! In addition to running around getting Sumana's H1N1 and her usual therapies, ANDREW got sick! And not your average cold. He has been sick IN BED since Tuesday . . . fever and a horrendous cough. I finally took him to the doctor today. Since the doctor said he heard 'crackling' in Andrew's lungs and the fact that Andrew got an antibiotic, I'm assuming he has at least an early form of pneumonia (though the doctor didn't specify). However, the doctor feels the lung issue is secondary to something else . . . so he tested Andrew for strep (negative) and H1N1 (results due later today).

The doctor is well-aware of Sumana's condition, so he also prescribed Tami-flu for her, pending the results of Andrew's H1N1. He also shared the 'good' news that while we've managed to keep the sickness isolated with good handwashing and LOTS of Lysol wipes; the system is bound to break down somewhere. He's concerned for our WHOLE family. UGH!!!! Greig's picking up a homeopathic flu remedy for us and believe me, at the first sign of anything we're taking it!

So, I guess I should have been less specific in my prayer request!!! Pray for health for ALL the Holmans, 'cause Sumana has to live with us!!! (LOL!!)

Monday, November 2, 2009

She got it!!!!

What a relief!! Sumana got her H1N1 vaccine today. I found out today that her pediatrician's office was not making a priority list for the H1N1 and that put me on the rampage. I've been told over and over that Sumana is high risk and needs to be among the first to be vaccinated. Well, she didn't qualify for the county public health program because of her restrictive lung disease (they only offered the mist for her age group) and her pediatrician's office still hadn't received the vaccine.

Thankfully, I called her pulmonary doctor's office (AGAIN!) and spoke to the right person. After being on hold for 10 minutes (??!!) I was asked to bring her in immediately. They had reserved a dose for her because she is in the high risk category. So, we hopped in the big, green van and drove to Rochester. Though I've been basking in the glow of not traveling to Rochester, I was more than happy to make the trip today. We even got child-sized face masks for her to wear to AWANA and church. That seemed to make her happy, so the rest of us are happy, too!! AND . . . Gretchen was able to get her H1N1 at the college today. Yea!! Two Holmans down, four to go!

Please continue to pray for Sumana's health. She still doesn't seem sick, just weak. I think we're going to make her walk more . . . not so much TV and coloring! We'll see what happens!

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 crosswindsonline.org

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: http://www.caringbridge.org/visit/ourgirl

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: http://www.caringbridge.org/visit/ourgirl/journal/1 or http://thebisnetts.blogspot.com/2009/10/and-breathejust-breathe.html

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

Sumana-isms

'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!)

Tuesday, September 29, 2009

PT and OT

Well, after getting some school done, Sumana and I got our haircut. It was a rather momentous occasion. Miss Shelly said that today was the easiest haircut ever for her (with Sumana). Usually, she has to prop Sumana up, have me help tilt her head up or down, etc., etc. Pretty involved process. Anyway, Sumana now sits up so straight and tall that cutting her hair is not an issue. Yea!! Another bonus I didn't even think of! They better list that on the VEPTR website in the benefits of surgery column.

Then, we did our usual shopping errands and headed to PT AND OT. Sumana had already done her respiratory and PT exercises this morning (VERY grudgingly, I might add!). By the time she got thru with all of her upper body and leg exercises she was whooped! She really worked hard and Miss Kristen and Mr. Darryl seemed pretty pleased with her efforts. If we can just keep her motivated and work around her emerging 'attitude', she will be VERY strong and healthy, very soon!!!

Sunday, September 27, 2009

Church and a painter's mask!

Well, Sumana made it to kids choir, sunday school and church today. But, she did in a painter's mask and lots of hand sanitizer. I noticed lots of people being rather paranoid about illness, too, so I didn't feel quite so crazy! Lots of people were avoiding hugs and grabbing the hand sanitizer after shaking hands. Hopefully, lots of people will stay healthier this fall by taking some precautions.

Anyway, Sumana really had a good morning and then ate another HUGE lunch and dinner. (Still sounds like good news to me!!!) One item of prayer tonight, though. We have a pre-teen with us tonight. She actually was placed with us in cooperation with the Sheriff's office. I think it's a long story, but I didn't ask. Our job is to give her a safe place for the night. She's settled down alot already. Hopefully it'll be a quiet night. (please pray to that end!)

Saturday, September 26, 2009

What an eater!

Well, I did forget my camera Friday night. Too bad! Our Sumana can really put away the food. It would have made a great picture to show all she ate! She ordered a cheese quesadilla and ate the WHOLE thing! Then, she proceeded to pick away at her mom and dad's fish fry! She probably ate a third, maybe a half of our huge battered fish. THEN, we had an apple cobbler at our friends' house and she ate a HUGE bowl of that!

Now just in case you're thinking it was a one-time deal . . . NO! She has been eating like that all day today! I hope this means she's getting on the healthier side of things! I only gave her one albuterol/cough assist treatment today (only 2 yesterday!). She really seems to be doing well.

She is very anxious to get to Kids choir and church tomorrow (she missed last week because she was sick). I keep hearing about all these colds and viruses that are going around and I can't help but be nervous about her being around germs. Here's how paranoid I am: I called my friend who's a nurse and asked if she had any face masks that Sumana could wear. (She's not sure if she has the medical kind, but her husband thinks he has the painter kind!!)

I hate to make her wear one, but we can't afford to have her get sick. Greig's youngest nephew gets married next weekend in Pennsylvania and she CAN'T get sick!! I know I should have faith that God will protect her from 'whatever' is out there, but I also want to be smart about helping her stay healthy. She has been sooooo good with using a liquid hand sanitizer. I even got her her own bottle that she carries around with her! I just plain freaked out by how a simple cold with Sumana becomes pneumonia within 24 hours. UGH!! I guess besides praying for our whole family's health, you can pray that Sumana will survive her crazy mom's antics!!!

Friday, September 25, 2009

Forgot my camera!

Oh, man! We went apple picking this afternoon and I forgot my camera!!! UGH!!!! It was soooo beautiful. I guess you'll just have to imagine Sumana under an apple tree picking apple after apple and placing it in her bucket. It was quite a sight. And, the apples were so plentiful it didn't take long for us to pick 50 pounds! Apple pies and apple cobblers here we come!!

Sumana still seems pretty healthy. She had more symptoms at bedtime last night, but she's seemed good so far today. She also got a whole day of school in. We actually have two whole weeks of school done! It's great to be able to 'double up' when we get behind. If we can get in some more good days, we should be able to get back on track with our initial school plan. Hip, hip, hooray!!!

Tonight, all three of our older kids have plans. This means Sumana gets to go out for fish fry with Mom and Dad and their friends. This should be interesting! Maybe I'll remember the camera this time!! LOL!

Wednesday, September 23, 2009

Really good day!

What a good day Sumana had (particularly, breathing-wise). She didn't get up for a 5:30 am breathing treatment AND she didn't even have coughing fits when she did wake up. Greig and I decided to cancel her doctor's appointment, but continue the albuterol and cough-assist today. We did that this morning, but then she didn't need anything else ALL day. (No Motrin til lunchtime! She went from bedtime til noon on one dose!) We'll do the breathing treatments tonight and probably twice again tomorrow.

So, we actually stayed home ALL day! I even took my long awaited nap! Tomorrow Sumana has PT in the afternoon, then hopefully we'll be home again on Friday. I could really get into staying home again!!! Yeeeeee-hawwww!

Tuesday, September 22, 2009

Two trips to Canandaigua

Well, Sumana woke up today just like most other days lately: coughing, trouble breathing, low grade fever . . . . So, we went in to see her primary doctor this morning in Canandaigua. She didn't cough at all on the way out or in the office. Surprise, surprise her lungs were clear. Thankfully, the doctor listened to me stress about how rough the last few days have been. He suggested it was time to give her a course of steroids to help her get over this once and for all.

The whole day was much easier for both of us. Except, of course, the fact that I had already planned to be in Canandaigua this afternoon. She did pretty well in physical therapy and even did some modified sit ups (first ones since the surgery!). Then, she got to meet Mr. Darryl for her occupational therapy evaluation. It was pretty clear that she's got some post-op issues to work through. Some of her goals are to be able to put on shirts independently, drink from a cup and raise her hands above her head without pain. Pretty reasonable, huh?? In addition to these post-op goals for her right side, she will also learn some exercises that should help strengthen her left side (which is affected by her spina bifida).

So, that means PT and OT on Tuesdays, PT on Thursdays. She also will probably be going back to her primary doctor tomorrow to make sure she's finally on the road to recovery. Whew! I'm ready for a nap!!! LOL!

Monday, September 21, 2009

Post-op update



Well, there you have it. The top picture is from today, showing a curve of approximately 32 degrees. The curve on her early August x-ray (bottom) showed around 52 degrees. (Today, though, Dr. Sanders measured close to 70 degrees on one of the curves . . . I guess it depends which curve you're comparing) At any rate, there has been GREAT correction and excellent chest cavity expansion. Dr. Sanders is VERY pleased with the results. We're VERY pleased with his expertise and gifts that he used to help our girl.


The official word is that Sumana grew 3.5 cm. (I thought it would be closer to 2-3 inches!) She goes back for another check up in a month. The next expansion is planned for February. As far as I know, it is an outpatient procedure where they make a small incision and crank up the rods. Also, Sumana asked if she was the oldest patient to receive a VEPTR implant and she found out 'close, but no cigar'. She is the most physically mature patient Dr. Sanders has ever worked on, but there is an 11 year old boy out there that takes the 'oldest' prize.


The not so good news is that Sumana had a really rough day with her lungs. It started before 6 am with coughing and trouble breathing (albuterol nebulizer to the rescue). Thankfully, she got back to sleep and slept til almost 10! Then she had more albuterol and chest PT and we headed out for her regular PT with Miss Kristen. After that we headed to Dr. Sanders (more albuterol inhaler on the way). By the time we were on the road home (3pm) she needed MORE albuterol. When we got home at 5 she was in really bad shape (back to the nebulizer and chest PT).


She was so bad at dinnertime that she couldn't eat or breathe easily. That meant no AWANA. She was sooo upset and crying that her breathing was worse than ever. UGHHH! Poor girl! We barely made it to an 8 pm nebulizer treatment and more chest PT. What a day! I'm sooooo tired of all these treatments, and I'm not on the receiving end!


Bottom line, unless she's much better in the morning, we're off to her primary doctor tomorrow. There really isn't much more we can do to help her. I guess we could start up the middle of the night treatments again, but that's soooo hard on all of us. She also has a PT make-up tomorrow and an occupational therapy evaluation. Unless she's in the hospital, I'm going to do my best to get her to her therapies. She seems weaker than she did right after leaving the hospital. It's a vicious cycle from needing exercise to get stronger body and lungs, but being too sick and weak to do them. UGHHHH!!! So, again, please pray for wisdom for us all in the morning and healing for Sumana's lungs.

Sunday, September 20, 2009

Two steps forward . . . one step back

Well, I have to say Sumana is still much better than she was Thursday, but she's still not doing great. She needed albuterol at 6 am and again before nine and then every 3-4 hours since. UGH!!! She's been 'freezing' today. UGH, again! It's over 70; it's beautiful! She doesn't have much of a temp; but she's still on Motrin, so I guess she's still fighting it. I did make her go out side for an hour, though. (I'm such a mean mom, huh! Making her kids go outside on a nic e day???!!!!)

So, even though we managed to get out to Crosswinds last night between treatments, we couldn't swing ANYTHING at Middlesex Baptist today. Tomorrow I'm cancelling her brace check up so that she only has her post-op appointment with Dr. Sanders. Hopefully, that will help keep her on the 'healing track'. Thanks for your continued prayers!

Friday, September 18, 2009

She's Much Better!

Sumana woke up in a better way today. No coughing. No crying. But a fever of 101. So, I wasn't sure if I should be happy about the 'no coughing' or not. I thought that maybe the fever meant that things were settling in more. However, when we got to the doctors' office in Rochester and had her checked out, it was definitely GOOD NEWS! Her lungs were quite clear and she was acting much more like herself. The doctor said that the antibiotic probably took effect right away. (And, a lot of prayer helped, too!)

We ran some errands and before I had finished all the errands, Sumana 'hit a wall'. She started coughing and having trouble breathing. So, thus ended the errands . . . postponed til another day. We came right home and got the albuterol and meds going again. She definitely is still dragging tonight, but sooooo much better than yesterday!

Sumana has an adjustment scheduled for her braces on Monday and the ever-anticipated post-op appointment with Dr. Sanders later in the day. That'll be an exciting day!

Thursday, September 17, 2009

Pneumonia :-(

What a bummer! Miss Sumana has pneumonia. UGH!! We've been working so hard to keep her lungs open and healthy . . . but she still got sick! I knew she was not feeling great yesterday . . . she was literally dragging her feet. Then, this morning she woke up crying. She was really upset about not being able to breathe (I think we would all want to cry!) She coughed and coughed almost uncontrollably. It was so sad.

We got in first thing to see Dr. Byer from Sumana's primary's office. Once again, it's her left lung that's the culprit. He's concerned enough that we go back to see him again tomorrow morning to make sure things aren't any worse. In the meantime, we're going to squeeze in 4 respiratory treatments today and have started on an antibiotic. I also informed Dr. Voter (her pulmonary doc) of what's going on. So, I'll keep you posted.

Our first bump in the road

Well, Sumana has been doing sooooo well it's really taken us by surprise. However, yesterday and this morning she is having a lot of difficulty breathing. The respiratory treatments aren't cutting it . . . I think I'll go back to 4 treatments today and see if that helps. Also, a trip to the doctor might be good to make sure things aren't 'settling' in her lungs. Sigh! Just when I was reveling in getting back into 'normal' life . . . I know 'it's' out there on the horizon.

I've been pondering the title "Sumana's Faith" lately, too. Faith is an unquestioning belief in something, a complete trust, a resolute stand. What a tough word! I can see that while my faith in Christ has always been there, I certainly have questioned and wavered a bit in His plan for our family. His way is always best, but that doesn't mean it's easy! In regards to Sumana, her faith in Jesus is so real . . . it's beautiful to see. And then, when you consider her determination to overcome challenges in her own life . . . WOW, what a package! She really is such a blessing! Please pray for her health today and for wisdom on my part to know who to call and what to do. Thank you!

Monday, September 14, 2009

AWANA!



Well, Sumana went to the orthodontist today (braces coming in 6 months or so . . . :( Then, she had PT with Miss Kristen. Afterwards, we visited with Great Grandma Williams. She ate 2 ho-ho's, a cookie and a huge glass of chocolate milk. (No wonder she didn't eat much dinner!)


Then, she went off to the AWANA blast off night. She was supposed to be 'watching' game time, but as you can see from the picture, she got right into it! She was sooo glad to be there. We had warned her months ago that she would miss the first few AWANA's. I guess we forgot about the power of prayer and the determination of one young lady! As you can imagine, she was VERY tired and ready for some pain meds when we got home. I'm just proud that she gave it such a good try. The more she tries, the stronger she'll get (I think!!)

Sunday, September 13, 2009

Sunday School and a Picnic!

Well, Sumana made it to Kids choir this morning and Sunday School. She probably would have stayed for church, too, but I didn't want to overdo it. She had soooo much fun . . . 'even though her voice isn't back yet'.

Then, after resting a bit, we headed up the hill to the Conservation Club. The Dorman/Emory family had a reunion of sorts. Our cousins from Texas and Pennsylvania even came. What fun! And, Sumana was in the middle of everything! (Especially playing with her cousins!) We only stayed for a couple hours, but Sumana was pooped. I guess she also had reached her pain limit, 'cause she took a FULL dose of the pain meds when we got home. She was really glad she went, though. (I posted a picture of her with Great Uncle David at the picnic).

Tonight she seem fine . . . except very 'itchy'. Those steri-strips are starting to loosen up! I bet they'll be mostly off by next Monday when she sees Dr. Sanders for her post-op appointment. Incidentally, at that appointment we hope to find out the 'final results' of her surgery . . . i.e. her growth and curve correction. In the meantime, she has therapy twice this week and a check-up with her orthodontist (that's an odd ball appointment, huh???)

ICU Withdrawal

Well, here's one of my 'back-stories'. I've waited to share it because Sumana has had so much news of her own to share. So, here goes:

Thanks to the Ronald McDonald House and lots of prayer, I adjusted really well to PICU life. I stayed with Sumana the majority of the time, but I got out to the play deck almost everyday, I got a good night's sleep most nights, and there was always plenty of food in the RMH frig to choose from. However, I'm thinking I adjusted a little TOO well.

When my dad picked us up last Saturday to take us home, I had the most bizarre experience. EVERYTHING was overwhelming to me: the sun, the crowds at Wegmans, the noises. Yikes! I guess being isolated in our little PICU room really had an affect on me. We had plenty of visitors and there were plenty of noises and plenty of nurse interruptions, but I really adapted to them. I guess it was still a controlled, predictable environment, (in an ICU sort of way!)

I realize you probably can't relate and it may not seem to be a big deal . . . but, WOW! Did it ever affect me! Today, I took Sumana to Sunday School and I had a very similar reaction at church. It really has something to do with crowds, noise, etc. It's funny that shopping at the outlet didn't affect me . . . of course it was very quiet/uncrowded there and we had a specific objective.

Anyway, it's not a very pleasant feeling. Hopefully, I'll get over it soon. At least we've adjusted well to being home. We're down to three respiratory treatments a day and I only have to get up once at night to help Sumana to the bathroom. It's just amazing to me to think that we've only been home a week and Sumana is doing stairs, walking to and from the van, and actually PLANNING on going to AWANA tomorrow night. God is GOOD!

Saturday, September 12, 2009

Some New Pics!





















So, here you have it: The Before and After. You can see Sumana still sits heavy on her left 'cheek', but now she doesn't need to!





















Here's Sumana in two of her new outfits . . . sporting her new, wider shoulders!











Friday, September 11, 2009

So Much to Tell!

I have soooo many 'back stories' to tell (not Sumana's back, but behind the scenes stories!) But first, an update an today's events. Sumana slept ALL night til 5 am, then again til AFTER 9 AM!!! That's gotta be a record for her! I kept checking on her to see if she was in pain or needed albuterol. She kept saying, "just wanna sleep". So, sleep she did! (She went all night on one dose of the pain meds and then a Motrin 'booster' at 5 am).

After our morning respiratory therapy I asked if she was up for shopping. MY GIRL, said 'YES'! So, we made a trek to the Waterloo outlets. Sumana got some new shirts, dresses, pants and sweaters. She had sooo much fun! She loved telling the sales people that she had surgery and grew so much that she needed new clothes!!

Because she slept in so late and then we did the 'shopping trip', I decided today was a good day to try three respiratory treatments instead of four. Sumana did not cough AT ALL today til dinner time. I think I'll see how the night goes and how she is in the morning. If it goes okay, I think we'll call three treatments 'good'. Somehow, three is so much more manageable than four. I'm sure Sumana will be happy for the change, too!

So, 'back stories', I already am out of time for them. But as a reminder for me, and a teaser for you, I have stories about the PICU and PICU withdrawal to share. Also, I have new 'after' pictures of Sumana's back, but they really don't show the change. I'm going to try some different angles and try to get her to sit 'straight', now that her back allows her to. (Miss Kristen noticed that she is still sitting 'lopsided' out of habit. Something else to work on!)

Wednesday, September 9, 2009

More Good News!

Yea! The chest x-ray taken today is much better! There are still signs of fluid around the surgical site, but the left lung we've been working on is greatly opened up. Dr. Voter agreed with Dr. Hollister and I about dropping the middle of the night respiratory work; but said we should continue it four times a day until Sumana seems to not need it. Then we can drop back to three 'beatings' LOL!

I was also concerned about when to let Sumana get back into her social routine. She so LOVES being around people, I was afraid she'd want to get back to the routine before she was actually able. Dr. Voter encouraged me to ease Sumana back into her 'social' stuff. I think we'll try Sunday School this week and (maybe) even an hour of AWANA. I guess the key is not to wear Sumana out. She can do whatever she can physically handle. Pretty cool, huh??

I'm so encouraged to see how much stronger Sumana gets every day. She is so determined. And, she really doesn't complain much. I just know that if I were in her shoes I'd be laying around, sleeping all day, moaning about my aches and pains. Good thing she's the patient!

Well, tomorrow is the start of PT again. (Tuesday was considered an 'evaluation'). Afterwards, we're going to hit a store or two to look for new clothes. It's amazing how much wider her shoulders are than before. Hardly ANY of her tops fit! She's soooo excited (actually, so am I!!)

Tuesday, September 8, 2009

Good News!

Sumana had her follow-up with Dr. Hollister (her primary) today. Her lungs sounded good (for her!) and we agreed we could stop the middle of the night 'beatings' (respiratory therapy). We're both looking forward to sleeping in our own beds for the WHOLE night tonight . . . hard to believe it's almost been 2 weeks!!!

Sumana also had an evaluation with her PT, Miss Kristen. She walked with one crutch down the halls and around the gym (probably 75 feet??) with Miss Kristen 'spotting' her. Then she did a series of endurance tests . . . sitting unsupported, standing unsupported, etc. It really appears that she is actually stronger NOW after surgery than she was after her more minor surgery in May. Unbelievable! That's the power of prayer and lots of hard work on Sumana's part (her PT, too!)

We're going to request occupational therapy for Sumana for a few weeks, too. Her right hand is very shaky and she can't lift her arm above her head without pain. If you can imagine having all your muscles cut and moved in your shoulder blade area; you can probably imagine the healing that needs to take place in order to get your arm and hand functions back. Sumana really struggles with feeding herself and almost anything requiring her hands. OT should help us retrain her as her muscles heal.

Tomorrow we're off to Strong for a follow up chest x-ray. I know we could have had one done in Canandaigua, but I really wanted her pulmonary doctor to be able to compare this week's film with Saturday's. I'm hoping the fluid is still dissipating. I'm wondering, though, how long it will take for the fluid to go away and if she is exposed to germs at this point, if her lungs are at a higher risk for pneumonia. (???) I'm going to ask around tomorrow. I'll let you know!

Monday, September 7, 2009

VEPTR Experience in Review

Just wanted to share some pictures of from our hospital 'adventure'. Dr. Pagoli and Dr. Sanders are planning their 'moves' before surgery. Then, there's a pic of Sumana with all her tubes and such. Then an x-ray showing her new straight back. Sumana with feeding tube, but no ventilator. First time sitting up. Then a pic of her playing basketball on the playdeck!
I'll try to get my 'after' shots taken today so we compare with the 'before' shots!
























Sunday, September 6, 2009

We're home!

Surprise, surprise. Sumana DID come home Saturday afternoon. Her lung x-ray was MUCH improved from Friday AND she was doing everything they wanted her to do; so they sent her home!


Now, mind you, though it is wonderful to be home, it is NO picnic. We have to provide aggressive respiratory therapy every 4 hours around the clock. Add in frequent bathroom breaks (we're still pushing fluids), and that means we rarely get an hour break. That was particularly hard last night, I didn't get more than 2 hours of sleep at a time; I didn't officially 'get up' today, til 3pm!

Friday night was rather 'memorable'. Sumana was experiencing a lot more pain and discomfort when she was 'cupped' (whacked on with a respiratory mask). So, I offered to stay with her til after her midnight regime. Then, I planned to go up to the RMH and sleep on an air mattress. But when midnight came, our nurse got really busy and didn't do the cupping. By one a.m. I went to ask her about it, and a resident told me it looked like we would be moving 'to the floor' soon because they had several new patients coming in.

Long story, short: We didn't move til 3:30ish and by the time we got settled in and ready to sleep, the orthopedic resident came in to make sure she was okay and THEN the x-ray tech showed up. UGH! We didn't get to sleep again til 5:30!! Dr. Sanders came in at 8ish and said he thought we could go home. I was a little uneasy because her PICU doctor hadn't seen her chest x-ray yet. Dr. Van der Jagt was more than happy to look at her x-ray with me. We saw definite improvement, but still lots of fluid hanging out in her chest cavity/lungs. Dr. Van der Jagt felt it was okay for us to go home as long as we maintained a consistent regime of respiratory therapy. He was so pleased, that he even left the PICU to go see Sumana and give his good wished to 'one of his favorite patients'. (she makes an impression on everyone, doesn't she??)

Today, Sumana walked out to the deck several times. Then, this afternoon she wanted to go out to her sandbox!! She walked with her walker all the way out to the sandbox and played for over a half hour. By the time she got back to the couch, she had been up and around for a whole hour! What a trooper!

Thank you, again, for your prayers and support. Please continue to pray for Sumana's healing, especially her lung situation. We're hoping to hang in with 'the plan' til her appointment on Tuesday. Then, hopefully, we can drop the nighttime therapy. Also, I'd like to ask you to pray for my health, too. I usually have a hard time staying healthy when I don't get enough rest. I'm hoping to break the cycle this time, so I can be there for Sumana.