'bout time for an update!

So much has happened and I haven't gotten to 'blog' about it. I'll try to re-cap the last five days or so for you.

Thursday was back to Sumana's 'regular' PT. Check out the picture of her playing the Wii with Miss Alyssa. Her pain level has continued to decline and she seems to be at the point where ibuprofen manages her pain (as of Monday evening).

Friday Sumana was fitted for new braces (AFO's in orthotic language . . .ankle-foot orthotics). Mr. Ray was very thorough and measured all of Sumana's quirky angles and shapes. He is going to make her braces 'in-house' so he can make the specific adjustments that Sumana needs. This will be the first time her braces have TRULY been custom-made. Hmmmmm . . . why didn't I realize this before??? Hopefully these new braces will correct her problem of leaning/walking on the insides of her ankles. Miss Kristen was able to contribute to the fitting, too, by mentioning Sumana's persistant walking issues. I can't wait to see the result!

Saturday I had to work at the library so Sumana was home with the teenagers and baby. When I got home we played Wii. She is so good at boxing! She knocks her mom down all the time and manages a knockout at least once a match! That night (ALL night!) I was in the Emergency Room with our foster daughter. It was a very longggg night, but we were very glad we had gone and she was so much better when we got home Sunday morning.

Sunday I had planned on taking Sumana to kids choir and Sunday School, but I was soooo tired we stayed home and I slept most of the day. Sumana needed pain meds that morning and was pretty dizzy anyway, so she wasn't too upset about staying home.

Today Sumana had Daddy helping her with her exercises and he reported that it took her 45 minutes to do her exercises. The good news is that he worked with her to make sure she did them the right way. Later they played Wii and he taught her how to improve her bowling game. (They're playing again tonight and Sumana is AHEAD!!! Maybe Dad taught her too well!!!)

Our electricity went off right after I got home from work, so Andrew, Sumana and I played Skip-bo. Sumana had never played before and it was a bit challenging to hold cards and reach to build her number piles . . . it was probably good exercise!! After two games she really had the hang of it. As a side note, we were one of only 9 homes affected by the power outage . . . over two hours . . . without AC . . . . UGH!!!!!! (I've become very fond of our air conditioners!!!)

This week starts our summer schedule. Jade has class and Sumana has PT every Tuesday and Thursday morning. It'll be an early start for all of us, but then we'll have the rest of the day for other things. Also, we go camping with our college friends and their families this weekend. It's always a majorly fun time!!!

New Dressing

I haven't taken the time to look back through the blog to see if I've commented on the dressings that Sumana has had on her back, but I must say this one is the prettiest and neatest ever! I took a picture today because it's coming off TOMORROW!!! The time has flown by. Sumana has been so much more comfortable this time that we haven't yearned for the 'un-dressing' day like we have in surgeries past. She still takes benedryl once a day, but she hasn't complained constantly about the itchiness.

Also, medicine-wise . . . Sumana has cut back on the pain meds!!!! Instead of 3 times a day, we're down to TWO times a day. It may not sound like a big difference, but we see it as a big sign of healing and progress. She has PT today, so she'll probably need it afterward, but she'll just have Ibuprofen in the meantime. Tomorrow, she goes back to the Happiness House to get fitted for new braces!!! Yea! We're so excited to be able to take care of them so close to home! One less trip to Rochester!!!

Doing Better

Yesterday Sumana had a terrible cough, low grade fever and trouble breathing. So, being the super cautious mom that I am, I called Sumana's pediatrician and took her in. The doctor thought her lungs sounded good, but put her on prednisone to help her through the next few days.

She seem better today and even went outside to play at her sand table for almost an hour. She started back with some leg exercises and goes to PT tomorrow to try to get back in shape.

Meanwhile her mom is totally exhausted. I haven't slept all night since last Thursday . . . but I did get a wonderful nap this afternoon. I'm hoping that since Sumana can get around better by herself I'll be able to sleep again soon!

All Sumana can think about now is having a friend over for a sleepover, camping with our college friends' families and going to Kids Kamp. She has a busy, fun month ahead. Hopefully I can catch alot of fun pictures to share with you.

PT (Pain and Torture)

Sumana has had a LOT of pain this time around. She rebounded well enough on Saturday that we didn't take her back to Strong, but Sunday and today were still pretty high on her pain index. I guess we'll have to reconsider leaving the hospital so soon. When I called the doctor on Saturday he said the only option was to take her back to the hospital for IV pain meds.

I was wearing thin by yesterday, so Sumana layed on the couch more than anything else. I had her moving on Saturday, but I could barely move myself yesterday! I think Sumana paid for her inactivity today. She had her PT re-evaluation today so that she's ready to begin regular PT on Thursday. Her muscles were really tight and she was really dizzy from the pain meds. Miss Alyssa and Miss Kristen were able to get the info they needed, though, so at least that's done!

Yesterday in Word (pictures follow!)

We had hoped to leave early enough in order to have time to visit our friends Giana and Dana in the PICU, but with traffic and construction we only got to the hospital 10 minutes early. The good news, though, was that they were packing up to go home anyway. Yes! By the time we got to the pre-op area it was 9:28. All that effort and we were only 2 minutes early!

They took Sumana back fairly quickly and started to get her ready for surgery. Once they found the requests for nerve monitoring, they had to move us to 'the quiet room' because of the fumes. What a great room! It was a private room with a door, not just a curtain! (It felt like the Taj Mahal!)

As she sat up in the bed, doctors and nurses were coming in and out, in and out. 90% of the people remembered Sumana from previous surgeries. It was so funny! It was like she was a celebrity and everyone wanted to come and get her autograph! (Actually, Sumana's crazy mom was taking pictures of all of them with her!)

We had seen Dr. Sangeev in the hallway as we came down to the pre-op waiting area. He told us that it was his last day and he was moving to New York City. We were soooo bummed. It was always nice to see him and Sumana together . . . they were both born in the same Indian City. Anyway, he made a point of stopping in to see Sumana before her surgery and to say good bye. We'll really miss him, but we're happy to see him moving ahead with his career. If you're reading, Dr. Sangeev, Sumana and her family with you the very BEST for your future!!!

We got to meet the Dr. Constantine, who's in the next class of anesthesiologists after Dr. Sangeev. He took all of Sumana's info and was very friendly and kept Sumana laughing. He was great at setting her at ease. We'll look forward to seeing him at future surgeries.

At the same time, Miss Geri came in with posters and markers, stickers and chapsticks! She's a Child Life Specialist, who's job is to play with kids before their surgery!! She and Sumana had so much fun experimenting with chapstick flavors for her mask. Sumana still insists on having the laughing gas before any needles touch her body! I think it's more about playing with chap stick, though!!!

Dr. Sanders came in to see our girl next and he was his usual efficient AND friendly self. (It's such a nice combination!!!) He marked up Sumana's back and explained his plan again. At that point I asked him if we could go home that night if things went well. He was more than happy to agree to that as long as there were no complications in the surgery.

By 10:50, the OR was ready and Dr. Constantine came to take Sumana back. She and Rocky (her stuffed Black Lab with hospital bracelet and matching surgical cap!)rolled off for surgery 10 minutes early. Greig and I hung out in the waiting room and were joined by Mrs. Curtis, Miss Melody and then Miss Sonja. Thankfully, there were only 2 or 3 more children taken back after Sumana, so we had the whole place to ourselves and we could eat our lunch in our own private dining room (LOL!!!). It really helped pass the time to have these ladies with us.

We didn't have any updates til Dr. Sanders came out at 2:15ish (I think). He said the surgery had gone well. He replaced the lower portion of the far rod with the largest rod he could fit in. This will hopefully allow for many future expansions. The rod closest to her spine was expanded 2 cm and the previously broken rib held up well. I guess there's still a chance it might break again, but he has no concerns at this early stage. So, in a nutshell, things went extremely well and we are very grateful to Dr. Sanders' team and our own prayer team.

Since this post is getting WAY long, I'll try to speed through the 5 hours she was in 'recovery'. When she first woke up she announced to the post-op nurse that she wanted her DAD!!!! UGH!!! So, when they came out to get ONE parent to go back, i stood up and started back, but the nurse said, 'Is dad here? She's asking for him' Whatever!!! I'm just chopped liver (LOL!!) After only 20 minutes or so, they let me go back to, so I guess I'm not holding too much of a grudge!

By the way: they put her in 'the quiet room' again til we moved to the PICU or went home. It was such a great room, because we could close the door if it got noisy and it had 3 chairs and a TV! It was the perfect place to hang out for an extended time. And, we were glad not to have to visit our PICU staff friends!

She started having to do 'number one' within an hour of surgery and so we are now acquainted with another form of 'medical equipment' . . . the bed pan. Not to embarrass her, but let me just say her bed pan got a LOT of use over a 3 hour period!! We had to wait til 7:30 to get a final dose of Toridol (sp?)for the road. Just before that, Sumana WALKED to the bathroom, 25-30 feet away! Then she PULLED herself back into bed for her IV. AMAZING!

We left right after the IV and Sumana slept ALL the way home. THEN, she walked up our grassy hill (in her hospital socks)and in our back door. I've said it before and I'll say it again . . . WHAT A TROOPER!! We gave her an albuterol treatment and gave her a snack, drink and meds and tucked her in her comfy couch! I took the other couch and set the alarm for 2 am. Thankfully, she needed a bathroom break at 1:30 am, so she got her next dose of pain meds without having to be woken up. She was still up every hour or two for bathroom breaks, but no pain issues or lung issues overnight.

So far today her pain level has been at a 10 even with the meds, but the TV seems to help distract her. She also said she wants to play on the Wii balance board with help later, so I'm thinking the pain isn't a true '10'. We'll see how the day goes. As long as we can manage her pain she can stay home, otherwise we may need to take her back in. But, since she knows that I'm thinking she'll do everything she can to stay home.

Yesterday in Picture

Here's a picture of Dr. Sangeev and Sumana. They were both born in Chennai, Tamil Nadu (India). He has been involved in at least two of Sumana's surgeries and Friday was his last day. He finished his residency at the U of R and is now off to New York City for further training in cardiac anesthesiology. We are REALLY going to miss him.

Here's a picture of Dr. Constantine. I understand that he is Greek and he is a year behind Dr. Sangeev in school. So Sumana is working her way around the world meeting new anesthesiologists. So, we'll hopefully see him a few more times before he completes his program. Both men have been extremely friendly and thorough in caring for Sumana.

I can't even remember what you call what Umit does. He's put wires all over Sumana three times now. I know it's to monitor her nerves while she's in surgery, but I don't know what you call it. Anyway, it continued to be a fun morning in the pre-op area . . . like a reunion of sorts. (weird, huh??!!!)

Miss Geri has played with Sumana before. She has the cool job of being a Child Life Specialist. Miss Geri gets to play with kids before surgery. Having an operation just isn't what it used to be! No wonder Sumana likes visiting the hospital!

Miss Geri brought stickers and flavored chapsticks to decorate and 'aromatize' Sumana's face mask. Strawberry with a touch of Kiwi! Yum!

And, of course, our star team captain . . . Dr. Sanders!!! (Yea!!! The crowd roars!!)< span>r>
This is a picture of Sumana about an hour after surgery. She came 'out of it' so quickly this time. Yes, she was still a bit groggy, but nothing like February. I think the anesthesiologists have her figured out!

This is a picture of Sumana standing outside our van when we got home. I think you can see how tall and straight she is. We'll get more pictures soon. But it's a good start! Our foster daughter's first words to Sumana were, "Wow, you're soooo tall!' It was really cute and Sumana beamed.

12 1/2 hours door to door!

Just a quick update to let you know that Sumana's surgery went FANTASTIC!! She was in surgery about 3 1/2 hours and was able to recuperate in the 'quiet room' in the pediatric ambulatory unit. Dr. Sanders was able to use her same incision from the first surgery, so it is really long and goes all around her shoulder blade. However, no other incision was made and nothing new. Woo-hooo!! The rod nearest her spine was expanded 2 cm and a super long NEW rod was put in the lower half of the far rod. (So, lots of expansions should be able to happen there!!)

I can't wait to share pictures from Sumana's social pre-op time. It seemed like she knew everyone and everyone knew her. It was such a riot!!

We're home and it only took us 12 1/2 hours door to door. Thank you so much for your prayers. Dr. Sanders was VERY pleased with the procedure and happy to let us come home tonight!! Yea!!!

Surgery Tomorrow (Friday)

Well, surgery is set for 11am Friday (we have to be there at 9:30). We'll have our usual team of supporters wreaking havoc on the waiting rooms (we can get noisy!!). I also will be able to visit Giana and her mom. They're still in the PICU with G's undiagnosed fever. It was up to 104 today! Please pray for wisdom for the infectious disease team. So far all of her tests have come back negative. I know they're hoping to go home tomorrow, so I may miss them after all. However, if they're there it will be a nice distraction for me.


Last Saturday, we did something 'different'. We went clothes shopping BEFORE Sumana's surgery! I don't think she'll grow out of 14s yet, so we got her some more summer clothes to get her ready for camp. Please pray that things go smoothly so she can get to camp!


We'll try to update as soon and as often as we can. That means I'll have to dictate to Greig. LOL!!

Gotcha Day #6

Well, it snuck up on me in spite of Sumana's constant reminding. Yesterday marked her sixth 'Gotcha Day'. Greig and I flew into the US on June 14, 2004 with a frightened, tiny Indian girl. It didn't take long for her to adjust and learn English. What a spitfire! And, as we all know, she continues to be such!

We didn't do much special yesterday except say 'Happy Gotcha Day' and I made idli for her. I must say THANK YOU WEGMANS for stocking Madras Sambhar. I was SOOO not into making it from scratch. Sumana even said it reminded her of her 'childhood' . . . huh . . . she talks so grown up!

Well, our little friend Giana made it through her VEPTR lengthening and removal very well. They're still trying to figure out the strange fevers she's been having for the last 6+ weeks. I guess she has the 'go-ahead' to leave from an orthopedic stand point, she just needs to be cleared by the other departments. She should be discharged before Sumana goes in on Friday. (Good for Giana, but we'll miss sharing the hospital experience with the Bisnetts).

In other news, Sumana should finish up her homeschooling before her surgery on Friday. Hip, Hip, Hooray!!!

Crazy week behind us, another one ahead!

Last week was full of doctor, school and work appointments for our foster daughter Jade. Sumana tagged along for some of them, but mostly spent her time at home . . . with her 14 year old brother (GASP!) She wasn't too thrilled, but she also knew we were keenly aware of her attitude (remember the dishes and exercises??), so she managed to get through it.

Now, to report on the attitude adjustments we were working on. The idea of doing dishes and exercises EVERY single day seemed to put Sumana on high alert toward her mouth. She seemed to 'catch herself' frequently and either stopped what she was going to say or at least acknowledged that she was 'doing it again'!!!! I gave her a choice for lunch one day and instead of choosing one of the options I gave her, she offered another suggestion. As soon as it was out of her mouth she said, 'No, I'll have PBJ . . . I don't want to have to do dishes again!' I told her the way she asked didn't show attitude and she was OK . . . no dishes that night. However, she did do dishes 5 nights in a row! (Jade and Andrew (our other dishwashers), were pretty pleased about that!!!)

On to other topics: Miss Kristen (Sumana's PT), has a student working with her this summer from Upstate Medical. Miss Alyssa and Sumana seemed to get along right off the bat. Check out the picture of her and Sumana getting ready for her Wii balance challenges (Miss Kristen is hanging out on the exercise ball). Alyssa has chosen to do her case study on Sumana. She asked for lots of background info about Sumana and her past treatments.




That got me digging through a folder that I used to keep. I have so much paper from Shriner's Hospital, the Kirsch Center at Strong, several PT providers and a bunch of other stuff. Boy do I NOT miss those early days of not being certain about who to believe regarding the treatment for Sumana. We had extremely conservative options being presented locally and some pretty extreme options laid out by Shriners.




I am sooooo thankful for Dr. Sanders' arrival in Rochester. He is God's man for our family as far as pursuing the correct treatments for Sumana. Because of his concerns, we started seeing a pulmonologist (lung doctor). That led to getting a cough assist machine which has helped her immensely in sickness or in health. We also learned that an annual sleep study evaluation would give us early warning of any respiratory changes that might occur. Yes, it means more appointments, but it also means Sumana is much healthier and stronger. As I've mentioned in an earlier post, all of the doctors and clinics at Strong can access all of Sumana's patient info, MRIs, x-rays, etc. It really helps to get her the best care possible.




With all that said, her buddy Giana (not quite 2) is having surgery tomorrow and then Sumana will be in on Friday. Please pray that both girls will have clear lungs throughout the process and that the doctors will make the best choices for our girls' procedures. Sumana's VEPTR adjustment should take place around noon on Friday. Thanks for standing with us in prayer!

Forgotten Excitement!

Things were so busy with our houseful, that I forgot to share the extra excitement that was ALSO going on! On Saturday (5/29), I cleaned my friend's two rental homes so she could get away for the weekend. If you remember, the weather was starting to turn very warm (hot!) I was soooo looking forward to a nice long shower to get the sweat and grime off, but as I entered our house I soon found out that wasn't going to happen any time soon. Our well had gone dry.

Somehow the water had gotten left on for watering our new grass seed. Five people had taken showers and Grammy had just started a load of laundry and planned to do the morning's dishes. By 11ish, there was no water. I got home around 3 and they still didn't know about the water being left on. Thankfully, Grammy noticed the hose in the backyard and we got the spigot turned off by 3:30.

Before too long we had water again, but alas, the washing machine still wasn't working. Hmmmm, not a blown circuit, not a problem with the water coming 'in', but NO other action whatsoever. And, the machine was only about 18 months old!! With our crew of 10 people, we NEEDED laundry done, so I carted a couple loads to my Grandma Dorman's on Saturday, another load on Sunday and another couple of loads on Tuesday. Thankfully, our trusty appliance repairman came on Wednesday and diagnosed the problem. It was a broken lid connector. Whew! That was a reasonably easy and cheap fix! Boy am I grateful to have my washer working again! Five loads done . . . just today!!! Wooo-hooo!

Also, over that same time period our Big Green Van needed attention. It got 4 new tires, an alignment, a new exhaust and most importantly . . . . the AC got fixed. Hallelujah!!! It seems like a new vehicle . . . at a fraction of the cost!

Well, Sumana continues to have lots of teenage 'attitude' creeping in. It's rather exhausting, but we've been through this before. She doesn't like it, but the more she complains, the more she gets to do the dreaded task, (i.e. instead of doing dishes every third day, she now must do them once EVERY day til the attitude changes. If she complains about exercises, she'll do MORE the next day and not get Sunday off). Hopefully, she'll catch on soon . . . she's getting 'in' pretty deep! LOL!!!

Back to 'just us'

Grammy and Grampy left yesterday . . . I can't believe they were here 10 days!! The time flew and no one killed anyone! Between the hot temperatures and close quarters, that's a miracle!!! But really, we had a WONDERFUL visit. Jade and Gavin seemed to enjoy Grammy and Grampy, too. Check out the picture of the WHOLE clan!! (well, Grampy, Grammy and grandkids!)

The house seems really quiet now. Jeffrey started his job at Canandaigua National Bank. Gretchen started her killer summer school schedule (2 classes in one month!!) Andrew, Jade and Sumana are trying to finish up their school work before Sumana's surgery. Sumana will definitely make it, but Jade and Andrew have a ways to go! At least we're getting close!