Lovin' the Snow!

Wii Fit with Miss Becca- one week post-op!

Wii Skiing with Miss Becca

Walking backwards with Miss Kristen!

In spite of being pretty physically and emotionally drained, I was rather 'giddy' on our short drive to church this morning. The snow is SOOOOO BEAUTIFUL!!! It's the first time this whole winter that the snow is sticking heavily on the trees and bushes. It had quite the calming and peaceful effect on me. (Boy, did I need that!) I won't go in to details, but the addition of a 15 year old girl has been rough on our whole family. For a family who treasures routine and personal space and LOTS of quiet . . . . you can imagine the stress we're all under. (But, I do think Kathleen is adjusting well. She just has a lot of 'our' rules to adjust to and 'our' liberties to enjoy within reason).

This week will be busy with two appointments for Kathleen and getting her registered at Whitman. Sumana has PT twice this week and I'm going to try to get an appointment with a foot and ankle specialist for a second opinion on Gretchen's chronic ankle troubles. Never a dull moment at our house, huh??? We're SOOOOO looking forward to a get-away weekend with our college friends and their kids in a couple of weeks.

I promised pictures a long time ago. So, I will pass them along. Enjoy! )At the top, of course! I still have troubles with computer 'stuff'!)

A very, VERY long day!

Whew! What a day! We left the house at 6:45 am and got home about 5pm. Poor Kathleen! She really got the Holman trial by fire treatment! I think she got the hang of things by noon, though. She was LOVING checking out Rochester (her first experience there). Again, Kathleen is our new foster daughter. There is so much paper work involved in transferring from one high school to another, there was no chance they were ready for her today. (Hence, her LONG day with us!)

With the addition of a third girl in Gretchen and Sumana's room, we wanted to try to reconfigure the bedroom. After lots of measuring, we decided to get a different desk for Gretchen and possibly a futon for Kathleen. I found a desk on Craigslist and we had to leave at 6:45 am to pick up the desk before the seller had to leave for work. The roads were horrible! (slushy snow) We actually almost didn't make our appointment due to a bad crash on the thruway. We found out tonight that one of the drivers was killed.

After getting the desk (that's another LONG story!) we did some Wal-Mart shopping and then made it to Sumana's orthotics appointment a little early! Miss Christina gave her all kinds of new padding . . . not sure it's helping, but it's worth a try!

Next we went next door to Dr. Sanders' office. Sumana had x-rays done to check the position of the rods. Dr. S was very pleased. He also showed us why only one part of one rod needs to be replaced. There are 3 or 4 MORE notches left on the rod nearest her spine, no notches on the other rod. So, Dr. Sanders plans to replace ONLY the lower part of the lateral rod. That should make it somewhat less serious surgery. He also want to wait 6 months til the next surgery, even if Sumana starts to lean again. He knows now that the lateral (outside) rod will fix the problem. Bottom line, Sumana will see him in June and have surgery in July or August.

Meanwhile, the snow continued to fall as we grabbed lunch at McD's and ran a few more errands. We made it to Canandaigua in time to get Kathleen boots and Andrew sneakers. By this time, the snow was getting heavier and blowing and there were more accidents. UGH! Sumana had her PT with Miss Kristen and by then I was READY to GO HOME! Thankfully, as I was leaving Canandaigua I got a call that the library was closing . . . so I didn't have to come back and work! What a relief!

Andrew was waiting for his guitar lesson, but I called to take him home before it started. (He was soooo bummed!) ANOTHER accident held us up trying to pick him up. Half an hour later we were back on the road to go home! Sigh! Now, we're trying to get the girls' room set up and plan to STAY PUT!! (At least til lunchtime tomorrow!!!) Good night, all!!

Found Part of it!

Woo-hoooo! My cousin reminded me about Amazon for buying 'stuff'. I had checked for the Wii products over the weekend and they weren't available (for the 'new' price, anyway). When I checked TODAY the consoles were available! So, we've got the console and 2 remotes and 2 nunchucks covered, but still need to find the Wii balance board with Wii Fit. Feel free to give a shout if you find it some where! (BTW, don't share the news with our kids if you see them . . . it's a surprise . . . they never read this blog!!!)

Sumana had an orthodontist appointment today (after a dental cleaning this morning!) I was determined to tell the orthodontist that her teeth are fine, she has enough stuff to deal with. However, her teeth do 'hit' each other in a BAD way. I'm going to check with Greig and Dr. Sanders, but if they say it's ok, Sumana will get braces next month! (Oh, brother!!! I am NOT ready for that!)

Also, it looks like our family will be getting a new member this week. Kathleen (15) has visited us two weekends this year and it looks like she'll be moving in full time this week. We still need to figure out more permanent sleeping arrangements in the girls' room, but all the kids are looking forward to having her come. Please pray for me . . . that means 4 teenagers and one 11 year old under one little roof! Yikes!

We're still here!

Boy, it's been awhile since I've updated. Sumana is doing pretty well. The itching is still an issue from time to time, but the benedryl seems to be helping. Also, Greig and I have been working and WORKING on getting off all the adhesive that was applied after her surgery. Once we get it a bit liquefied it still won't rub off; we have to 'mush' it into a ball. It feels like the rubber cement I used in elementary school. Strange stuff!!

I need to post some pics, too. I have shots of Sumana playing the Wii at PT with Miss Becca. She tried out a bunch of new exercises on the Wii Fit . . . yoga was her favorite. BTW, I finally called the Yates County Special Children's program about the Wii Fit software and balance board. We got approval for it today. Sumana's PT and primary doctor have already expressed their support for it, so now we just have to find one. A lot of places seem to be sold out, so if you happen to see a Wii console with Wii Fit Plus, let us know!

Sumana has her post-op appointment with Dr. Sanders on Thursday. We'll try to do some Wii shopping after that. She also sees Miss Christine about her leg braces. She has developed a lot of heavy calluses since she got these new braces in September.

In other news, Sumana and I went clothes shopping at the outlet mall on Saturday. What a lot of work! Pushing the wheelchair around . . . in and out and around racks . . .taking off her braces and shoes . . . trying on pants. Standing, leaning on mom to put one foot in then the other . . . repeat this 7 or 8 times. UGH!! I took a nap as soon as we got home. AND, we only hit 2 clothing stores! She did come away with 3 pair of new pants, 2 shirts, a hoodie and a jumper. It is CRAZY to see the sizes she wears. She needs a 12-14 girls size, however when you look at the length the pants are a good 4 inches too long. UGH!!! Thankfully, we found leggings and sweat pants with elastic around the ankles.

Sumana was eager to get on the treadmill at therapy today (though THURSDAYS are her treadmill days!). Miss Kristen just 'went' with it and Sumana did 10 minutes on the treadmill! She left with 'jell-o' legs, but I sure was impressed! That was 4 times at 2:30 minutes! 2 minutes is the longest she's tried (post-op) at home. Way to go, girl!

She slept ALL night!

What a relief! Sumana slept ALL night long. Whew! That felt good for mom and dad, too! Sumana had another rough day yesterday, but thankfully she slept a couple of hours in the afternoon and then a bit more in the evening. (That's her resting last night in the picture). Before all the sleeping she did 5 minutes on the treadmill! (5x 1min.)

We called the doctor's office to ask about options for the itching . . . but never heard back! UGH!! So, Greig took matters into his own hands and called a friend who is an orthopedic doctor. He discouraged us from putting anything ON the steri-strips. Instead, he said we could try Benedryl. (Maybe that's why she napped in the evening, too!)

Today she is in much better spirits and the itching doesn't seem to be as bad. I told her she could take some more Benedryl if the itching bothered her again. She immediately said, "No! It's yucky!" We'll have to see how it goes. She has PT today with Miss Becca. I'm not sure what's planned, but Sumana is counting on some Wii action as part of HER plan!

Thanks, again, for all your prayers, cards, calls and e-mails. They really mean a lot to Sumana (and her family!)

Still Itchy and Miserable . . .

Well, we made it through yesterday. At times it seemed we made it 'just barely'. Thank you for all the encouraging notes and prayers. Unfortunately, though, today is starting out as a repeat of yesterday (up at night with itching and pain and itching this morning).

The added bummer today is that I looked under her dressing and saw dried blood all around the stitches under her right arm. That's the place that she has been 'doing the chicken dance' to. (that's the first thing that came to mind to describe her crazy elbow/arm technique to scratch herself!) I told her yesterday she had to be careful not to pop the tape open, so today I may have gotten through to her because of the recent bleeding/oozing. The areas still all look really good, except for the one spot.

In spite of everything yesterday, she still did 4 minutes on the treadmill (4 x 1 min.). She's got a lot more pain today, so we had to back off the OT/PT exercises. The treadmill doesn't seem to bother her, so we'll try for 5 minutes today!

Itchy and miserable!

Please pray for Sumana today. She is really itchy and in a lot of pain. She was up during the night with itching fits and it continued this morning. Greig and I decided to change her gigantic dressing to a smaller one. Leave it to me . . . when I took off the bandage I freaked out. Her entire shoulder blade area is stitched up. (The same size and place as the FIRST surgery). On top of this, the itch-iest part is under her arm, on her right side . . . RIGHT where there are stitches. UGH!!!!

So, she has been one sob-machine today. I'm afraid my freaking out didn't help at all, either. The doctor had shown us one small incision spot at her pre-op appointment. I could see looking down into her dressing (and from his markings right before surgery) that he had to go in around her shoulder blade . . . but the WHOLE area! Yikes! I'm going to lobby for TWO new rods at the next surgery. I don't want to see her cut up like this every six months. Oh, remote . . . . Where are you???

Thanks for your prayers. She definitely has 'hit the wall'. Our little trooper is pretty discouraged. It's pretty sad. Hang in there, girl!

More Pictures!

The bandaging is as big and thick as the August surgery.

Here are some shots of the new and taller Sumana. She's still doing really well. We've cut back to twice a day with the respiratory therapy and once a day with the pain meds. Sumana continues to do a little more every day. She did 3 minutes total on the treadmill today. Yea, Sumana!

PT Evaluation

Check out the flexibility!

Soooo tall and straight!

Sit ups 24 hours after surgery???!!!

Even a turn on the treadmill!

Other than holding down her food and medicine, Sumana's main excitement today was her physical therapy evaluation. Whenever Sumana is hospitalized she has to be re-evaluated before she can resume PT. So, in anticipation of resuming PT next week, we opted to do the evaluation TODAY only 24 hours after surgery! How amazing is that?? I say it all the time, but Sumana is such a trooper!

She had strength and flexibility tests, balance evaluation and even a treadmill trial. Some exercises were harder than others, but Sumana really tried her best. She lost some strength and balance, but nothing serious. One of the awesome benefits today was to see the PTs reactions to Sumana's straight and tall look. Of course, Miss Kristen noticed it the most because she has to put up with Sumana twice a week, but even the other PTs admired her new look.

It's crazy to think one day Sumana is slumping over to the side and the next she's straight as an arrow. What an amazing gift the VEPTR has been for her. By the way, I told her I wanted her to try her crutches at therapy today. When I gave them to her, she said they 'felt funny'. Well, duh, mom. She's taller and needs them lengthened again! We also are busy bagging up her outgrown clothes. Hopefully we won't have to repeat our post surgery shopping spree to the extent we did in September, but some shopping must be done. (A good excuse for mom and Sumana to shop! We're girls, after all!!!)

A good night (and a REALLY LONG post)

Here's a picture of Umit putting on Sumana's nerve sensors.

Here she is waiting for surgery . . .what could she be doing???

Dr. Sanders drawing on her back--about a 4-6 inch cut line over her August incision.

This is what I saw when I went into the recovery room! What a gift!

After several barfing episodes, Sumana settled down and had a really good night. I woke her up at 3 am for albuterol and cough assist. She got a lot of gunk up . . . which made her mom happy in a gross sort of way. She slept the rest of the night and then got up BY HERSELF and went downstairs (BY HERSELF) to watch her favorite morning TV shows.

She is sitting so straight and tall. Last night as she climbed up the stairs we noticed how tall and straight she looked. This VEPTR contraption is really amazing!

Now that I've had some sleep I can recount the chaos of yesterday. Last night it was too close and too stressful to relive. In a nutshell, Dr. Sanders reserved a PICU room for Sumana to spend the night in. We got that call at 7:30 yesterday saying the surgery might be cancelled because there were no PICU rooms available. By 9:30 a room WAS available and surgery went as planned. The chaotic part started after surgery. Since she came off of the ventilator pretty quickly, 'SOMEONE' called the recovery room and said she didn't need a PICU room.

The really crazy part was that Dr. Sanders, the anesthesiologist and the attending PICU doctor expected her to go to the PICU for observation. Our recovery room nurse was livid when she found out about the mix up. In the meantime, someone else had taken Sumana's PICU room. So for almost an hour we didn't know WHERE Sumana was going to go. Finally, they said she was going to a 'regular' room, but there wasn't one available yet. They moved Sumana BACK to the pre-surgery area to wait for the room. By this time I was remembering what it's like on the 'regular' floor and as I said last night, I didn't want to do it. It may have been a purely selfish act, but if Sumana wasn't in danger I wanted to go home.

Since I told the rest of the story last night, you're up-to-date. Oops. I didn't tell you that Sumana climbed right into the big green van at the hospital or that she walked all the way up the sidewalk and stairs to get into the house last night. AND, I forgot to tell a great SUMANA STORY: She has met so many techs, nurses and doctors over the last year that she remembers them and they remember her. She told me yesterday that it was nice to know everyone in the operating room. Dr. Chen was the only new face, but he and Sumana hit it off right away. There was Umit, her nerve monitoring buddy, Dr. Sangeev (her Chennai, India 'brother'), Nurse Maryanne and Sumana knew Dr. Sanders would be on the way. Before surgery I reminded her of her favorite scary-time Bible verse: Jesus said, "I will never leave you or forsake you.' Between the Bible verse and all of her hospital friends, she was very at ease.

If you're still hanging in there, I'll tell one more SUMANA STORY: She amazes all the medical personnel she meets. She can readily tell her name, complete birthdate, allergies, type of test or surgery she's having and how she likes to go to sleep for surgery. Dr. Chen laughed out loud when she said she wanted the mask with the chapstick first, then he could put in the IV. Dr. Sangeev first introduced her to the box of scented chapsticks in May '09. She can choose her favorite scent and they coat the mask with it and as she goes to sleep she smells strawberries instead of the yucky gas smell. Then later, of course the recovery nurses were blown away that she was going home . . . especially after the whole PICU mix-up.

Well, that's the long, drawn-out version. I'm going to keep up the albuterol and cough assist every 4 hours today, maybe tonight and tomorrow. If she's up to it this afternoon, we'll go to see Miss Kristen for her post-op re-evaluation so she can start up PT again next week. Thanks for your continued prayers! God is answering them in a BIG way!

PS-- Sumana just said, "Thanks for begging them to let me come home. It's much quieter here!"

Trapped in the basement, but now free AT HOME!

What a day! As I wrote in the earlier post, we went to the hospital this morning not sure that Sumana would actually have her surgery. However, when we got in to the surgical waiting area, they took us RIGHT in! I guess a bed did open up and that kept Sumana on her slated surgery time. The real bummer was that in the basement there was NO cell phone coverage OR internet! It was such a claustrophobic/cut-off sort of feeling. So many apologies for not posting sooner!

The surgery was supposed to be about an hour; however Dr. Sanders had reserved the operating room for 2 hours. I was fine for the first hour and a half. We had our 'usual' waiting out the surgery crew: Melody, Deb and Sonia so there were plenty of distractions. However, as 2 hours approached I started to get really antsy (maybe it was the 4 cups of coffee I drank!). At 2 1/4 hours I was up and around asking questions. Then, thankfully, at about the 2 1/2 hour mark, Dr. Sanders came out to speak with us.

The surgery went VERY well, the rods were lengthened at 2.5 cm. The good and bad news is that now she's outgrown one of the rods and will need a new implant at the next surgery. Her left lung did not look very good on the initial x-ray, so he said she would not be extubated right away. What a disappointment! But, 45 minutes later, they called me in to see her and lo and behold, she was awake, tube-less and smiling!!! What a wonderful surprise!

The ensuing hours were VERY chaotic and stressful. I don't even want to go in to it. Greig says the bottom line is that it worked out for the best. There was so much drama going on about where Sumana was to go next, that they kept her in the recovery area . . . . and kept her . . . . and kept her. By that time she had had 2 glasses of water and a bit of cracker AND she had used her cough assist machine. When they finally said she'd be going to a regular room, I began to have second thoughts.

The other two experiences I have had on the 'regular' floors were not particularly good ones. Both times we were moved to ANOTHER room in the middle of the night. Also, I had to do all of the care of Sumana and we had all the usual hospital noise and interruptions. So, I thought 'If I have to take care of her any way, I want to go home!' And, that made me brave enough to ask the doctor if we could go home. The resident called Dr. Sanders and surprise, surprise HE SAID YES!!!! (By the way, her lungs sounded good at the time!)

So, we left the house at 8:15 this morning . . .the roads were snowy and we saw a couple accidents . . . but not bad . . . and we were home by 8:00 tonight. Sumana is doing really well. The bummer is that her pain meds make her throw up, so she hasn't had anything besides Motrin since 2:30 this afternoon. Her pain level is at a '5' so she's hangin' in there pretty well.

I have some pictures, but I'm pooped! I'll try to post them tomorrow. Thanks for your prayers for us today. Please continue to pray that Sumana's lungs stay clear and that she heals quickly.

Prayer Requested . . . . NOW!

The hospital just called and said there are no PICU beds available. Sumana's surgery may need to be cancelled. Even though she shouldn't NEED that extra care, the doctor wants to be prepared after our experience in August.

The doctors round between now (7:30 am) and 10 am. Please pray they find someone in good enough shape to move out to the main floor or to go home. Thanks, in advance, to our faithful prayer warriors!

BTW, when I came downstairs Sumana was doing her ankle exercises!!! LOL!! I told her, "No PT today!" We did do cough assist and OT exercises, though (and she was VERY agreeable!)

Surgery is Tomorrow!

"Mom, I can't wait for tomorrow. I can FINALLY get a break from my exercises!!!"

Well . . . maybe not. Sumana's surgery is scheduled for 11 am tomorrow (Wednesday) and she doesn't have to be at Strong til 9:30 am. That leaves PLENTY of time to do her exercises before we leave. (I haven't mentioned that fact to her yet. Maybe she can take Thursday off!)

We have had so little snow this year! I had to suppress that 'green-eyed monster' a lot over the weekend. To see all that beautiful snow and how it paralyzes places that don't know how to deal with it. I say, "We'll take it!" Our poor kids have only been sledding once this winter and there was so little snow that they got bruised doing it!

So, tonight and tomorrow we're supposed to get 5-7 inches. Hmmmm . . . . now I'm not so eager about the snow. We actually have to get Sumana to the hospital through that stuff. I can't just stay home and bake bread and cookies. The easy answer is to let my Maine-iac husband drive and enjoy the ride. Then, again, the snow probably won't even materialize. It's missed us every time so far.

Please pray for Dr. Sanders. I know he's back from Haiti, but I don't know what shape he's in. I know he gives everything he's got for every surgery, but I can imagine he's still feeling the effects of his work in Haiti. Also, pray that Sumana's lungs remain clear; that was the problem that kept her on the ventilator for so long in August.

Thanks in advance for your prayers. I'll ask Greig to update the blog as we get more information tomorrow.

Expansion explained

Many people have asked what Sumana's expansion/lengthening surgery is all about. She had the VEPTR placed in August (Vertical Expandable Prosthetic Titanium Ribs). Every 4-6 months the rods will be expanded/lengthened to accommodate growth and increased lung capacity. On Sumana's x-ray Dr. Sanders showed us the device on the end of each rod that will be adjusted. In the picture the adjustment spot is on the lower end of each rod (I'm not sure WHICH spot, though!). Dr. Sanders will make two small incisions over those spots and use a tool to 'crank up' the rods. The only 'bugaboos' with this surgery will be the risk of breaking ribs and device failure. As long as no complications arise, the surgery should last about an hour.

In doing some research, I found that in the near future doctors won't have to do an invasive surgery to expand these rods. They actually have developed a REMOTE to expand the rods in the doctor's office! How cool is that??? Family members have joked about accidentally cranking up Sumana when they actually mean to turn up the volume or change the TV channel!

Thanks for your prayers about MY health. While I still 'feel' a bit of cold symptoms, nothing has developed. I'm actually much better today than I was on Friday. I'll update Tuesday with Sumana's surgery time. Hopefully, Greig can update the blog at the hospital on Wednesday (I still 'don't do' laptop keyboards!!!)

Response from New York State Assembly

Well, I got a very prompt and personal letter from James Bacalles and George Winner in Albany. Many of you will remember our recent health insurance scare and my subsequent soap box tirade. I sent letters to all of our state and federal representatives bemoaning the lack of insurance options for working class Americans.

The response from Bacalles and Winner, while sympathetic, left me with the feeling of "that's just the way it is." Here are excerpts from their letter:

"While we understand the $700 per month cost is a burden for your family . . . . on the open market could run as high as $2-3,000 per month."

"All of the subsidized health insurances sponsors- Family Health Plus, Child Health Plus, Healthy NY--had to be approved by the federal government . . . ."

"The state tried to be as flexible as possible with options, sliding scales and generous eligibility guidelines, and still win federal approval. We don't anticipate these rules to change in the near future. In your case, you must choose to either work part-time while keeping your income level at a point where you will remain eligible for Family Health Plus or not."

So, it appears to ultimately be a federal issue. I still don't 'get' why Child Health Plus can charge monthly premiums for families who 'go over' the income guidelines and Family Health Plus just terminates coverage and a family is forced to consider the next equivalent option . . . with a price tag of $700 per month. I'm curious to see what kind of response I get from our representatives in Washington . . .

For now, we're opting for me to volunteer my Friday hours. This helps to keep our income in the right spot. I think this option allows us to retain our integrity AND continuous health coverage. I'm confident God will inflict us with a good dose of guilt if it is not part of His plan for us! He always seems to get His message through to us one way or another!

The Last Hurrah!

We're doing it again . . . cramming as much fun in as we can before surgery (while attempting to limit exposure to germs!) Sumana spent Friday evening with her AWANA girls' group at LeTourneau Camp. They ate lots of food, played lots of games (Sumana got to teach her friends how to play Wii bowling--she learned in PT) and in general had lots of fun.

Today, Sumana and I spent a few hours making Valentines and other cards. Though I'm a Stampin' Up! demonstrator, I don't think we've ever sat down with such a concerted effort. She had her list of cards to make; I had mine. It was a lot of fun and a good project to get out of the way!

Please keep Sumana's health in your prayers. AND, mine, too! I've been fighting off a cold for several days. I even wore a surgical mask during school on Friday. I'm being so psychotic about Sumana not getting sick from others and she's being exposed to plenty of germs right at home. UGH!!!

Her lengthening surgery is Wednesday. We won't know the time til Tuesday afternoon. As long as there are no complications, the surgery should be over in about an hour. However, her experience in August has the doctors calling all bets 'off'. Thanks for your encouragement and prayers as we press ahead this week with Sumana.

"Weird" and "Outstanding"

First of all: Weird. That's how Sumana described the sensation of the nerve testing. She had 4 wires to her head, 3 on her upper back/neck area, 3 on her lower back and 4 on her legs and ankles. She said it felt like her hands and feet were falling asleep. The funniest part was when the technician applied the electrodes to her neck. It tickled her so much! She giggled and giggled. It was really cute.

Now: Outstanding. That's how Dr. Voter described Sumana's lung function today. (Now this is "outstanding" for Sumana, not compared to any normal function tests). Though her overall lung function is about the same (low 40%), her inspiratory numbers HUGELY improved (from 39 to 96!!) I had mentioned to Dr. Voter how much Sumana hates using the cough assist, so she was quick to praise Sumana for her hard work. She stressed how much better and healthier she's getting. But, when Sumana asked her when she could quit the cough assist machine, the doctor told her probably not for a long time.

I guess it has also been a rough season for lots of Dr. Voter's other patients, so she was especially pleased to hear about Sumana's good health AND that she caught a cold AND got rid of it! Again, she told Sumana this is because of the VEPTR and all of her hard work at PT and the cough assist. Dr. Voter was pleasantly surprised to find out that Sumana walks on a treadmill EVERY DAY. Sumana told her she gets short of breath sometimes after doing that, but Dr. Voter said, "keep at it . . . don't stop the treadmill!" So, hopefully, Sumana 'gets' the fact that her hard work (even though "boring") is really making a difference.