Wednesday, December 22, 2010

Possible Answers

Sumana saw Dr. Sanders Tuesday and the x-ray showed something earlier ones (apparently) did not. The lamina on the vertebra that the VEPTR is attached to is eroding or damaged. And, the lower right rib appears to have cracked where the other rod attaches. Both these things sound worse than they are. Both are risks of using growing rods. The good news is both areas appear to be healing well and Sumana has been doing better pain-wise.

The other good news is that her upper spine is in good position. Dr. Sanders is VERY pleased with that. My concern about her still 'slumping' to the right is not the big concern I thought it was. The doctor's main goal is to help her straighter her scoliosis curve and that's happening. Since things look good, we're looking at surgery in May. If she has any complications before then, Dr. Sanders will move the date up. However, he feels confident in waiting til May at this point because his objectives are being met.

Overall, good news. Sumana starts PT at my PT office tomorrow. She'll get some special attention for her back and hopefully continue to help her work through her remaining back pain.

Saturday, December 18, 2010

We owe you pictures!!!

Well, I think we're still lacking December pictures, but at least we're starting to get you caught up!

By the way, Sumana still is having quite a bit of pain, but she is going to start some intensive PT to address the issues with her back. She'll still get PT on Mondays at the Happiness House, but she'll go an additional day or two to a different PT to get treatment on her back. She sees Dr. Sanders again this week, so we'll see what his next plan is for her. We'll update again next week, with more pictures (I hope!!)

Sunday, December 5, 2010

Sincere Apologies . . .

I'm so, SOOOO sorry it's been soooo long. Unfortunately, this time 'no news is NOT good news.' Sumana started out great after surgery, but we've had a rough couple of weeks. First of all, I took her back in on her birthday (November 22), to check on the way her back was 'bulging' or 'sagging' as bad or worse than before surgery. Usually, she comes out straighter and taller, but this time we saw little, if any, improvement. At that visit Dr. Sander's nurse practitioner said things looked good on the x-ray, so the obvious answer was that we didn't get as much benefit from the expansion as usual. This was the last expansion on these rods, but I can't help but wish the doctor had put in new rods THIS time. I'm afraid she'll be having surgery much sooner this time.

Well, pain-wise Sumana did very well: that is until Thursday when she started up with a sharp, stabbing pain on the right lower side of her back. It seems to be at the place where the rods connect on the lower side. So, we were off to see Dr. Sanders on Friday, Dec. 3. Once again, the x-rays showed nothing. The rods look like they are properly secured and there was no sign of infection. However, she's back on the narcotics and she wakes me up EVERY night for meds. If she's not better by Thursday, the doctor wants to see her again.

So, it's been a rough time this time around. Add to that, the fact that Daddy has been in New York City, Philadelphia and Albany for work . . . Sumana really misses her dad (ditto for the rest of us, too!)

We're off to celebrating the Christmas season. Gretchen has a choral concert Thursday, our Williams family get-together is Sunday, the Foster Family party is next Tuesday, and the list goes on. I still have pictures to load, but it takes awhile, so that will have to wait for another time.

Tuesday, November 16, 2010

New Record

I haven't found the post that I'm thinking of yet, but I think our quickest surgery was 12 or 13 hours door to door. Yesterday we made it down to 10 hours! Sumana's surgery didn't start til almost 2pm, but Dr. Sanders was out to give us a report by 3:40. It was a standard expansion, no new rods needed. The only issue was anesthesia. As always, they had a hard time finding an IV site. We had hoped to get the IV put in before surgery because it had worked out so well for her shunt surgery. (ie: she didn't throw up!) But after 2 hours of prepration, they didn't see a good site and said she needed to use the mask. The good news, though, is that she still didn't throw up! She laid almost flat for her whole recovery, eating and drinking slowly. When she was ready she sat up and got dressed. Then we went home!

Last night was really long. Sumana had to get up almost every hour to go to the bathroom! UGH!! The pain seemed to be more than usual last night, but this morning she seems to have turned the corner. She's been playing on the computer this morning and has gone 5 hours without the serious pain meds . . . just ibuprofen. We appreciate your continued prayers!

Friday, November 12, 2010

Late Monday Surgery . . . .

UGHHHH!!! Poor Sumana! Her surgery is scheduled for 12:30 Monday. What a long time to go without food!! AND . . . it'll be tough to get out of post-op before they close at 8. Sumana doesn't have a PICU room reserved, so I'm determined to go home. I want her to be ready and stable, but I know I do an awful lot of work on a 'regular floor room'. I'd rather be doing an awful lot of work under my own roof!

Sumana has six (count 'em SIX!) girls over for her birthday. The actual day is 10 days away, but we thought she'd enjoy it more now before all the trauma to her back. I'll try to post pictures tomorrow. I hope we can all get some sleep! They're still pretty chatty and it's almost 11pm!!

Saturday, November 6, 2010

Fun Visit and busy week ahead

We found out last week that my Aunt Ruth had been moved to hospice care and had requested to see Sumana. So, this morning we headed over to Hospeace House outside of Naples. What a lovely spot (even in a snow squall!!!) Aunt Ruth was so pleased (and surprised to see Sumana. It brought tears to her eyes. It really was precious! We had a wonderful visit and got to hear all sorts of stories. I always enjoy visiting Aunt Ruth . . . but the visits are always very far apart. Aunt Ruth was very alert and talkative . . . very much herself! Sumana flashed her beautiful smile over and over.

This week Sumana has PT twice, gets her stitches out on Tuesday and has her birthday party on Friday. Poor Andrew gets all 4 wisdom teeth out on Tuesday. Greig goes to Cold Springs (near Newburgh, NY) on Monday and comes home next Sunday. Sumana's next VEPTR surgery is Monday the 15th. The good news (sort of) is that this is my first week not working at the library, so I should be a little less pressed for time. Whew! I'm looking forward to being able to catch my breath.

By the way, Sumana's friend, Giana, has her next VEPTR surgery with Dr. Sanders on this Monday at 7:30 am. I know her family would really appreciate our prayers for her and the surgery. Thank you!

Saturday, October 30, 2010

OK . . . so there are 34

Wow, I used to be such an exaggerator. Huh . . . . I got to counting Sumana's stitches today . . . 34 total in the 3 sites. So, more than I thought . . . but I'm still impressed with how much hair Dr. Silberstein was able to save. He's a surgeon who knows about girls and their hair!!

Sumana still has had quite a bit of pain today, but the alternating Ibuprofen and Tylenol has worked pretty well. She is VERY weak, so I had her doing some of her leg exercises and 15 minutes of Wii balance today. I guess that's my biggest concern now for her upcoming surgery. We need to help her get her strength back so she can 'go under' yet again. I actually may agree to spend a night in the hospital this time . . . though I'm still trying to catch up MY sleep from our latest adventure.

Sumana will get to stay home with Daddy on Monday and then she gets her re-eval at PT on Tuesday so she can resume her work with Miss Becca on Thursday. She wants to at least go to Sunday School tomorrow, so I guess we'll try. I'm pretty nervous about germs, but I guess we'll go with the flow. If I see or hear anything suspiciously germy, we'll be out of there. (However, Sumana did agree to wearing a face mask if she has to. I already feel bad about her having to cover her shaved head, though . . . I don't want to turn her into more of a spectacle with a mask).

Friday, October 29, 2010

Quick explanation

The reason Sumana had surgery was because her shunt had stopped working. As a result of being born with spina bifida, I guess the spinal fluid couldn't drain off the brain as easily as it should, therefore she developed hydrocephalous (water on the brain). So the shunt drains excess fluid off the brain, maintaining a fairly constant 'normal' pressure on the brain. The fluid flows from her brain to her abdominal cavity in a tube, then it is absorbed by the body. Instead of doing anything with the shunt on her right side, Dr. Silberstein put a brand new shunt in on the left side. I hesitated to call it brain surgery earlier because I didn't want people to freak out, but that's really what it was. She has a total of maybe 20 stitches in three separate incision sites . . . two on her head and one on her belly.

Home again!

Well, I'll make this short. We're pooped! Sumana had a rough night last night, pain wise. However, she woke up feeling better and ate a good breakfast. We got the ok from Dr. Silberstein to go home. Because it was going to be a big 'party day', though, we got permission to stay a few extra hours so Sumana could participate.

In the morning, she went 'shopping' for a costume. The Spirit Halloween store had donated a TON of costumes. She ended up with a Fairy princess . . . very pink! I even bought a wrap from the cancer patient store to help cover her off-center reverse mohawk. (She's super self-conscious about her 'stitches' . . . I don't think she's realize some of her hair was shaved. Though, the surgeon did a nice job preserving some hair to 'flop' over).

While I was looking for a camera and a hat of sorts for her, a volunteer (whose family is from Chennai!) wheeled Sumana around the fourth floor and then started a game of Monopoly with her. (That's the first picture). The next picture is some of the PICU nurses. They had so much fun dressing up. Our favorites were the dreadlocks and 'Pebbles'.

I thought the trick or treating was on the children's wing of the 4th floor . . . it's REALLY long. Kids started at the PICU end and worked their way to the end. The hallway was lined with nurses. staff and students (most in costume, too)all handing out candy, silly bands, pencils, stickers, etc. etc. But at the end of the hall we didn't turn around and go back . . . no . . . another hall as long as the last one was lined with MORE faculty and students handing out MORE stuff! She got 2 HUGE bags crammed with stuff.

I must admit, before we were half through the 'parade', I started to tear up. There were sooo many kids. All dressed up: Jessie from Toy Story, Buzz Lightyear, Spiderman, Batman, Big Bird, princesses, fairies. Some of the kids walked independently, some in wagons or wheelchairs, some with IV poles, some obviously with cancer. And, all the staff and students were so eager to give things to the kids. I overheard some of them comment about all the 'thank yous' from the kids. It was a regular mutual admiration society. It is probably one of the most moving sites that I have witnessed in a long time. Everyone wanted to make Halloween special for kids that were probably going to miss the festivities at home. What a production and what a ton of love!

Anyway, Sumana is exhausted tonight, but glad to be home. Greig is back in New Jersey, but he'll be home for good Sunday afternoon. Sumana is cleared for surgery November 15, so please pray we can keep her healthy. Thank you!

Thursday, October 28, 2010

Surprise (??!!)

So, yesterday I called Dr. Silberstein's office and was told that since his schedule was full, we should go to the ER at Strong to have a CT scan. We grabbed lunch at McDonalds on the way and got to the ER a little after noon. The first thing done was a shunt series of x-rays. That was a real waste of radioactive exposure. Nothing showed . . . and I mean NOTHING. On the x-ray there was NO SIGN of a shunt. However, you can see the scar, feel the tubing . . .etc., etc.

So, a little while later the chief neurosurgery resident came in to see Sumana and said he wanted to see a CT scan (surprise, surprise!!). I guess that showed enlarged ventricles in her brain (not a good thing) and it was evident that the shunt was not working. You may remember, this shunt was placed in 1999 in India and the last revision was in 2000. So, no one in the US knew what kind of shunt she had and there were no records from India.

After consulting with Dr. Silberstein, he dropped the bomb. He said that though there wasn't a lot of change in the CT scan from her past baseline CT, they didn't like the symptoms she was presenting: blurred and double vision, headached, loss of balance, etc. I guess Dr. Silberstein asked the resident if he had any plans that evening, because he didn't and he'd like to put a new shunt in.

What a shock! Poor Sumana teared up right away. She acted like she had the rug pulled out from under her (me, too, by the way!) They called the OR and told us she'd be going into surgery between 7 and 8. They planned to put a brand new shunt in the LEFT side of her brain, totally ignoring the dysfunctional one.

That's when the flurry of phone and texts took off. I had texting ability in the ER, but no phone. I had to contact Jade and the other kids and poor Greig in Princeton, NJ. He took off immediately to come be with his little girl. We also had no clothes or toiletries for our sudden hospital stay, so I had all kinds of people helping with that, too.

Anyway, she was taken to surgery around 8 pm and the doctor came to see me just before 10 pm. The surgery went really well and he put in a "Delta 1.5" shunt. (Don't you love the technical jargon . . .hey, dad . . . I've got a Delta 1.5!!) Because we had had that trip to McDonalds, they had to use a different anesthesia. Before going to surgery Sumana HAD to have an IV put in and blood taken (in addition to the blood draw she had on Tuesday). Thankfully, the numbing cream, warm packs and patient nurses worked and they were able to place an IV after 'only' four times. Also, Sumana was upset about not having Rocky, her stuffed puppy. Thankfully the nurses at Strong are very persistant and resourceful. They managed to scrounge up a beautiful black Beanie Baby to stand in until Rocky arrived.

So, my parents had been in Grove City, PA when all this excitement happened around 4 pm. They were supposed to spend the night in Erie before coming home after 2months on the road. However, just as Sumana was coming out of surgery, I called them again and found out that they were in Henrietta . . . 15 minutes away!! Also, Greig showed up just as Sumana was getting settled in the PICU. (Incidentally, a couple hours earlier my Aunt Bonnie and Uncle Rich had delivered our necessities and ROCKY! So, when she woke up and had Daddy AND Rocky . . .she was a happy camper).

Because it was a major neurosurgery, the nurses had to check Sumana EVERY hour! UGH! not much sleeping went on . . . but lots of good Sumana stories. She didn't vomit after surgery (which she ALWAYS does) and she woke up really thoroughly, so she was very entertaining throughout the night. At just before 4 am, the nurse asked if Sumana would like to have the lights turned down . . . "I'm not a 3:50 kind of person" (translated: Yes, nurse. Turn them out and let me sleep!)

By morning she was not as perky and had more pain. However, she was able to eat breakfast and visit with Papa and Nana who came over at 8am. Unfortunately, she became nauseous after eating and lost her breakfast. She rebounded well, though, and wanted to be wheeled down to the play deck area to pick out some books to look at. By that time she was walking (with help) to the bathroom and trying to sit up for 30 minute periods.

Since that time she has kept her lunch down and is tolerating the pain on JUST Tylenol. (She HATES the taste of the codeine and would rather live with a pain level of 4 than have to take the stuff!) Oh, yeh. Before we went to surgery she said, "I just want to get this over with!!!" LOL!! What a trooper!

So, the other surprising thing is that Dr. Silberstein said he doesn't see any reason why Sumana won't be ready for her next surgery in 2 weeks! Can you believe it??!! As things stand this afternoon, Greig is going home to get some sleep and will go back to NJ for 2-3 days. Sumana should be released sometime tomorrow. Any adverse effects are supposed to surface in the longterm, so no complications are expected at this early date.

More good news: Sumana's former PT, Miss Kristen visited today AND she got to play Medical Bingo with a bunch of other patients. She really wants to hang around the hospital til tomorrow afternoon because they're letting kids choose costumes in the morning and then having an all out trick or treat event up and down the hall of offices on the 4th floor. What a riot!! They really do try their best to make the most of kid's hospital stay.

Thank you for your prayers. I'm just amazed at how everything has gone and the safety God has provided for travel and health. By the way, Sumana's vision was back to normal this morning (another confirmation that this was a good and timely thing to do!!)

Tuesday, October 26, 2010

Back from Rochester

What a day! We left at 7 am and got home at 4. Everything went very smoothly but it was exhausting. Here's the day in a nutshell:

Dr. Gearinger (pediatric eye doc): Sumana's right eye drifted outward for him (which he said is better than drifting in??!!). He said he has a similar problem. He showed her an exercise to force her eyes to focus near and far repeatedly. His main concern was if this was an issue related to her shunt. Her eye pressure was ok, but her optic nerve is so damaged from birth that he really couldn't say if it was inflamed or not. So, she's to try out these exercises and come back in February.

Nerve testing: Miss Kathy and Miss Lisa rigged Sumana up with a bunch of sensors and wires and then zapped her with electricity. (cue mad scientist cackle!) It really didn't bother her much, mostly crazy laughing from the tickling action she felt as they cleaned her skin and placed the sensors. However, the funny thing for me was listening and watching Miss Lisa. I imagine she is an older woman from the former Soviet Union. She would count as she raised the electric current. "I'm at 8 . . . 9 . . . 10, are you ok? really? let's keep going: 11 . . . 15 . . . 16 . . . 19 . . . 20 . . .. 21!!!!!!! I could just picture her as a former KGB interrogator!!! (I must have been desperate for some entertainment!!!)

Indian lunch: We went to Mysore Woodlands again. They have such great food. I still get a kick out of watching Sumana eat. This time we had Gavin with us, so we got to watch his reaction to the food. He seemed to love the chicken, rice pudding, and naan. I guess the restaurant staff must have thought he ate a lot . . . they charged us $5 for him??!!! Well, it was for Sumana and it kept Gavin happy, so I just went with it. (Note to self: don't take Gavin next time!!! or only feed him his baby food!!)

Dr. Sanders: Sumana had the obligatory pre-op x-rays and physical with Nurse Suzanne. Dr. Sanders came in and discussed his plans for the next surgery. He thinks this is the last lengthening he can get for the rods, so the next surgery will be more involved because they'll change out the rods. He was pleased with how this VEPTR looked and is optimistic about this surgery. He will reserve a room for her again, but as long as things go ok, we can head home the same day.

He did seem to think it would be a good idea to run Sumana's symptoms by Dr. Silberstein(her neurosurgeon). He doesn't see any potential complications with the upcoming surgery, but because of the symptoms, he advised us to get Dr. Silberstein's opinion. That will be on my agenda for tomorrow.

Thanks for praying for us . . . I'll try to keep you more informed over the next few weeks.

Monday, October 25, 2010

Lots of appointments tomorrow!

UGH! I'm already dreading tomorrow! Sumana already had 2 appointments scheduled: nerve testing with Umit and then a pre-op appointment with Dr. Sanders. However, just in the last 2 weeks we've noticed Sumana has developed a 'lazy eye'. She JUST had her eyes tested in August, but the sudden, noticeable change made me call her eye doctor. He is concerned and wanted to see her right away. So, we are his first appointment tomorrow. (That means we're leaving . . . with Gavin . . . no later than 7 am!!)

I haven't posted about Greig in a while. The life insurance sales job proved to be way too much . . too many hours, too little pay . . . too many 'rough' characters, etc., etc. Thankfully, just when we started looking, Olan Mills was hiring in our area. So, Greig is back with them again!! Yea!! He was in Philadelphia last week, Princeton, NJ this week and hopefully back in NY next week after training.

Andrew had an appointment last week with a knee specialist. The sort of good news is that he doesn't need surgery right away. The bad news is that he has WAY too much flexibilty in his knee joint. That means that the doctor needs to do a type of knee reconstruction . . . he'll actually graft in a 'new' ligament to try to hold his knee in place. However, since the area that needs to be worked on is right around his growth plate, the doctor wants to wait until the growth plate closes. He'll check it in 6 month intervals. He expects to do the surgery in a year or so.

Oh, yeh. So, because Greig will be traveling a lot and work most nights, I decided to quit my beloved library job. It just seems impossible to be able to keep up with everything AND work. I'm really sad about it, but I know it's another one of those 'seasons' that I need to be more flexible. Hopefully, life will be less hectic.

I'll try to update in the next day or two to let you know about Sumana's appointments.

Saturday, October 16, 2010

'Hi' from Sumana

Sumana is unhappy about me posting 'not so often'. So, here's some Sumana talk:

Hi, Miss Kristen, Matt and Megan, and I have no clue who else!!! I've been playing with my baby doll and watching TV. Mom made me do the Wii today. I did balance games, aerobics, yoga, pretty much everything on the balance board. She also makes me do my exercises every day except Sunday.

AWANA is fun and teaches you about the Truth. AWANA stands for: Approved Workman Are Not Ashamed. It is from II Timothy 2:15. Falling Leaves night is coming up this Monday. I'm going to do a leaf rubbing and maybe press some in wax paper.

Miss Becca is working me hard (note from Mom: though we haven't been to PT in almost 3 weeks!). I work on balance, strength and treadmill.

Sunday School with Miss Jean is fun. We do crafts and learn Bible stories and have snacks.

And . . . that's all!!

Saturday, October 9, 2010

We're back!

We had a fantastic trip to the Philadelphia area. While Gretchen toured Valley Forge Christian College, Jade, Gavin, Sumana and I toured historic Valley Forge. It was a rainy day, but we managed to take in the visitor's center (with video), and we took an audio tour in our van. It was really interesting to see where history happened. I guess I was in Valley Forge as an 8 year old, but it all seemed new to me.

After getting lunch at the college and a few meetings, we headed off to the King of Prussia mall. What an amazing place! Two levels, with TONS of stores. I guess it's the largest retail mall in the country. We were surprised at the variety of stores and the good deals. But, none of us bought a thing! We were true 'window shoppers'.

We dropped Gretchen off Tuesday morning at Philadelphia Biblical University. It was still rainy with frequent downpours, so we opted for a trip to the Adventure Aquarium in Camden, NJ. It was right across the river from Philadelphia. On the way there it was fun to see all the signs and billboards cheering the Phillys.

It was homeschool week at the aquarium, so that meant that we got in for LESS than 1/2 price (regular tickets are $23!!!) It was an amazing aquarium: floor to ceiling windows, glass tunnels that go through/under the tanks, hippos, penguins, of course all kinds of fish . . .!!!!

It was a great trip in spite of the weather. I sure was glad to get home and not have to drive in any more rain with tractor trailer trucks all around me!!!!

Saturday, October 2, 2010

Off to Philly!

Well, we take off for Tatamy, PA and a quick visit with the Tielmanns. Gretchen will check out Valley Forge Christian College on Monday, then Philadelphia Biblical University on Tuesday. Jade, Gavin, Sumana and I will visit historic Valley Forge on Monday and depending on the weather Reading Terminal Market and a drive around tour OR an outdoor walk around Independence Hall and the surrounding historic area.

The bummer is that Sumana is going on the trip with all kinds of meds. She is being treated for bronchitis/early pneumonia. She got the meds yesterday and thankfully, she's much better already today.

We'll have pictures to post when we get back. More on Wednesday or Thursday.

BTW, my friend who also has a daughter with spina bifida, posted this on Facebook: "October is Spina Bifida awareness month. Spina Bifida is THE most common, permanently disabling, birth defect in the nation. More babies have it than cerebral palsy and muscular dystrophy combined! 7 out of every 10,000 babies are born with Spina Bifida. If you know, are related to, or love someone with Spina Bifida, please re-post to spread awareness!! I love someone with Spina Bifida."

Wednesday, September 22, 2010

A Quick Update!

I have been having a very difficult time finding a chance to update y'all. So, at least I'll type up a quick update.

Sumana is doing really well in school this year. I can't believe she didn't 'forget' the basics over the summer break. She sees Miss Becca once a week for 45 minutes for PT. She's been back on the treadmill there and at home. At home she's up to 2.5 minutes 4 times!! Her next VEPTR surgery is November 15.

Jeffrey is still working at the bank and will graduate from Finger Lakes Community College in Dec. He just bought a beautiful new-to-him car.

Gretchen's surgery went well and she's now in a walking boot. It comes off in 2 weeks. The doctor will then do an x-ray to see if it is sufficiently healed and then she'll start PT if needed. It's been almost 6 weeks since she's driven her car and boy, is she antsy!!!

Andrew is in 9th grade homeschool and seems to be enjoying his studies. He also works most weekends at LeTourneau Camp washing dishes. He still takes guitar lessons and recently was certified in CPR and AED. He dislocated his knee twice this summer and is currently in PT.

Jade (our foster daughter) decided to go back to high school. She really likes her teachers and is looking forward to TWO homecoming dances in the next 2 weeks. She still works 10 hours a week at FLCC's cafe.

Gavin (Jade's son), is cruising around furniture and mamama-ing and nanana-ing all over the place. He'll be 1 in November.

Greig recently began a new job in the area of life insurance. He is now licensed and has a full schedule working in 'his' territory. It's hard work, but he really likes the products he offers and has a great boss that is 'grooming' him to be the next sales manager for our region.

I still work 10-15 hours a week at the library and play 'taxi-driver' for our kids. I watch Gavin while Jade is in school and work with Sumana on her 5th grade work. It is extremely crazy, but God has been faithful to give us what we need, when we need it. So, that's all for now, folks!!!

Sunday, August 29, 2010

Welcome September, Goodbye Miss Kristen

It is with great sadness that we must say 'good-bye' to Miss Kristen. She has been Sumana's physical therapist for four years (I think!). She has accepted a PT position closer to her home. While we wish her well and know it's a good move for her, we'll REALLY miss her!

Miss Kristen has single-handedly challenged Sumana to new heights and achievements we only hoped she MIGHT achieve. When Sumana started working with Kristen she was using a walker. Today, she can walk easily with arm crutches. When Miss Kristen sits behind her on a wheely chair, Sumana can walk with just a little support and NO assistive devices!! When Miss Kristen first worked with Sumana, she could not even raise her head off the table mat. Today, she can do full sit-ups and can use her elbows to sit up.

Here are words straight from Sumana's mouth: "Thank you for working with me, Miss Kristen. You worked with me for a long time. You came to the hospital when I was there, you helped me get stronger after surgery. When I saw you in the hospital, I really wanted to be back at the Happiness House doing work still, but I was glad when I could get back to work with you."

From a mom's perspective, it is just amazing to see how far Sumana has come. Miss Kristen is a classic coach-type . . ."cheater, cheater, pumpkin eater" teasing her and cajoling her into working harder and making each exercise count. She was fantasitc at teaching me what to look for as far as exercising certain muscle groups. Sumana is quite adept at compensating for muscle weakness by using nearby muscles. Kristen helped me see how Sumana would 'cheat' and what I could do to help her work the weaker muscles. It sounds a bit technical, but it really helped Sumana's home exercise program to be more effective. In true Miss Kristen form, she gave Sumana a new exercise sheet before she left the Happiness House.

Please enjoy the pictures. The first four pictures are the oldest (2 years old, I think). Then they go from most recent backwards about a year. (Too bad I'm having trouble reading computer code tonight---otherwise they'd ALL be in chronological order!!!) Thanks, again, Miss Kristen . . . you've made a HUGE difference in Sumana's life.

Saturday, August 21, 2010

Feeling neglected, readers????

Wow! I can't believe how tired I am and how sttrreeetttcccchhhed I feel! Sumana hasn't said anything, but I can't help but think she might be feeling a bit neglected these days. I'm sure you, our faithful readers, feel that way, too!

Gretchen had her BIG ankle surgery Tuesday and it turned out to be BIGGER than we expected. The doctor lengthened her tendon (1 incision), did an arthroscopy procedure to scrape and suck out the scar tissue in her ankle (2 small pokes) AND broke her heel to reposition her foot and ankle (1 more incision and a poke in her heel).

When she sprained her ankle last year, it never healed. After many doctor appointments, we discovered that the problem was a congenital defect in her heel. As long as her ankle was strong, she didn't have a problem. However, once the ankle was injured, it continually rolled over and over and would not heal. Thus, the need to fix the heel to prevent the roll-overs. So, her post-op plan is crazy! She has to keep her "toes above her nose" for SEVEN DAYS!!! THEN, once she can get up and around, she still can't put any weight on her foot for 2 more weeks. I think she can start PT after that, but she still won't be able to drive for at least 8 weeks!

And, just to keep things interesting, Andrew has re-injured his knee twice in the last month. When I took him to the pediatric ortho (Sumana's docs), they saw more chipped bone floating around and lots of fluid. Just to look at his knee you can see that it's way off track. Instead of pointing forward, his left kneecap points diagonally to the left. So, he's scheduled for an MRI Friday morning and I can bet he'll be having his own surgery soon, too.

I didn't check to see if I already mentioned this, but Sumana's next VEPTR surgery is scheduled for November 15th. It feels good to have that on the books and for it to be before her birthday and the holidays. She also has her pre-op appointment and her neurological testing scheduled for October, so she should be all set.

Gretchen, Jeffrey and Jade all start their classes at FLCC August 30. I'd like to start our homeschool then, too, but I still have lots of work to do in order for that to happen. If Gretchen is up for it, we'd like to get to the state fair, too.

You know, it has been so crazy, but I know God has given us the strength that we need to get through it all. God promises us that His strength is made perfect in our weakness. I need to remember that I can't do life on my own . . . I need God's strength and presence every day. Woo-hooo!! So glad He's there and that He cares about us!

Tuesday, August 10, 2010

More Pictures!

It's been WAYYYY crazy again, so I'll recap in pictures!

Another Creature Feature at the library!

A long, overdue visit with Sumana's friend, Giana.

Back to PT with Miss Kristen (Sumana's fire dancing!)

Ruby and Sumana at the Dorman/Emory family reunion!

The newest news is that Sumana got two great doctor reports! Last week her pulmonologist, Dr. Voter and respiratory therapist, Miss Kim, found that Sumana's lung function has improved 20 percent since February!! We're convinced God has used Dr. Sanders and the VEPTR to open up her lungs and let her use them! She also saw the sleep study 'people' and her study was (like last year), normal. We'll continue yearly sleep studies, but this is more good news!

Also, Dr. Sanders' secretary called today to schedule Sumana's NEXT expansion!! Holy cow! Now that's efficiency (and a very busy doctor's schedule!!) Monday, November 15th will be the next surgery . . . about 5 months since her last surgery. I think we're all pretty happy with the date. It's before Sumana's birthday and all the holiday activities, so hopefully she'll recouperate as well as she did in June.

Sunday, August 1, 2010

Final Week of July: Review in Pictures!

Swimming with the Hinterbergers in Watkins Glen.

Sumana's last day working with Miss Alyssa. She and Sumana had a lot of fun this summer. She gave Sumana some new exercises, helped her work on her Wii tightrope walking and introduced her to some yoga stretches. We wish Miss Alyssa all the best with her PT schooling. She's going to be GREAT!

Mr. Ray fitted Sumana with her brand new PURPLE braces. Once we get her some sneakers that don't have worn-out toes, this girl will be walking tall!!!

Sumana went to work with me again and was able to read to the dogs! This week Sam listened to Sumana. (and this time mom had her camera!!!)

Cousin Ruby had an AWESOME girly birthday party. The girls acted out a short play. It was sooooo cute . . . Sumana was the mother!!!

What birthday party is complete without a pinata!! Uncle Carl and Auntie Kerri rigged up a WAY COOL version of the pinata. Here Sumana is taking a wack with her noodle!

This week is going to be super busy again. I have my regular library hours PLUS 6 additional hours of training on some new circulation software the library system is switching to. Sumana also sees her pulmonary doctor, eye doctor and dentist this week. We end the week with our church's community fair. What a week!

Monday, July 26, 2010

Camp Re-Cap

As I suspected, Sumana had a great time at camp. I'm afraid she sat around too much and got too little sleep, though. When I picked her up on Saturday her legs were shaky and she was very unsteady. I have conflicting reports about her activity. Gretchen said every time she saw her, Sumana was using her crutches. However, Andrew said the opposite. He said every time he saw her she was being pushed around in her wheelchair. I know I have to consider the source a bit, but I'm afraid she's fallen behind a bit with her strength. I'm trying not to be disappointed about that and concentrate on the fact that she had a wonderful time doing stuff that 11 year old kids should be doing in the summer.

Sumana did comment, though, that next year she'd like to go to a camp for kids with special needs. There is a wonderful Rotary-sponsored camp not too far away, so maybe she'll try that out next year.

Today Sumana and I took Jade and her sister out for ice cream. Their birthdays are only two days apart. Afterward we went to the playground and let Sumana and Neena play together. It's always fun to see little girls playing together! The last picture is for Grampy and Grammy . . . they haven't seen Jade and Gavin for 2 months AND they've never met Jade's sister. Enjoy Grammy and Grampy!!!

Thursday, July 22, 2010

Kids' Camp!

Here are come 'first day of camp' pictures. Sumana is LOVING all the people and activity!

Tuesday, July 20, 2010

More Library Fun

Monday was another Creature Feature day. I was able to snap a few pics, but I missed the overall theme of the day. It doesn't really matter, because Sumana had a blast. One of the animals was actually a baby and the caretakers didn't expect it to run . . . . guess what??? It ran away under the bookshelves! I guess it was quite the drama!

Today Sumana had PT and then hung out with me while I cleaned my friend's rental house. We went outside this afternoon with the baby and Sumana did some swinging and sliding. It was really fun . . . especially when Gavin giggled and giggled at Sumana. It was a lot of fun. Tomorrow Sumana is off to camp til Saturday. She's so excited!!! Hopefully I'll get a few good pics to share!

Saturday, July 17, 2010

Reading to the dogs!

It's been another crazy week and Sumana was tired of being left home with 'a teenager'! So, she went to work with me today at the library. Five whole hours in a place that's supposed to be quiet and peaceful!!!????? Not a very interesting place for an 11 year old???? Guess again!

In addition to surfing the net for Adventures in Odyssey cds and info, Sumana got to do something extra special today. She read to a dog!! A local woman brought in her therapy dog for kids to read to her. Ruby layed on the carpet still as can be as 6 kids took turns reading to her. What a riot!!! Sumana read an Arthur book to Ruby and the other kids listened in, too.

I couldn't believe how busy Sumana kept. She said she liked to help kids that were looking for books. She had lots of suggestions and she knew alot to help find books and if she got stuck, she told them to ask me! It was too darn cute!

Sumana went to Creature Feature last week at the library (quilled animals visited) and I guess she's going again this Monday for more Creature Features!! Libraries certainly aren't what they used to be!! There is so much to do at the library (especially in the summertime!). It's my first summer there and I can't believe what a hoppin' busy place it is!! (I better remember my camera next time I go to work with Sumana!)

Wednesday, July 14, 2010

Camera in the car

Ugh!! I missed so many photo opps today and I had the camera with me . . . it was just packed in our overnight bag!!! I'll try my best to re-cap, but the pictures would have said it all a lot better!

Tuesday started out bright and early with PT at 8 am. Miss Alyssa introduced Sumana to some yoga stretches. Sumana was trying her best to get out of doing what was being asked, but Drill Sargeant Miss Kristen was close by to keep her working. It was pretty funny to see her try to get sympathy from Alyssa and then Kristen would be right there making sure she did just what she was asked to do!

Then we headed home to take Jade and Gavin to Penn Yan. We visited with friends for awhile because I had an 11am meeting. What a riot to see my friend's 4 year old daughter rubbing Sumana's skin over and over. Jazzy is really fair skinned and we found out that she was trying to see if she could rub off Sumana's dark color. (Did she think Sumana was dirty??? That would be REALLY dirty!!!) That was my first missed photo op. It actually would have made a great video!!!
After my meeting we headed to Rochester to look at a 'new' van. I had found two cars over the weekend. Interestingly enough, the local car was sent to auction and the Rochester van had been sold by the time we got to the dealer. I love how God directs us so clearly. Because of our research last year, I've pretty much settled on two vehicles and we know what price range we're looking at. The two vehicles met all the requirements, but I guess it's not time to get a new van. I didn't mention that on the way to Rochester, we dropped off the Big Green Van. The 'service engine soon' light has been coming on and off randomly since our camping trip. I guess nothing is really wrong, so we're just going to keep driving it . . . a little unsettling, but definitely the most economical solution!

Next, we were off to see Dr. Sanders. I had forgotten to grab Sumana's handicap parking tag when we got our loaner, so I had to park at the VERY back of the lot. I did drop Sumana off at the entrance, but it through me off enough that I forgot to grab the camera (AGAIN!!) It was so far back out that I didn't dare leave Sumana to get it, so there it stayed. And, that's why I don't have a new x-ray picture for you. And, boy was it a good picture. You can clearly see both rods and the ribs they are attached to. The doctor thinks the rib that broke in April is holding well. He said the rod might migrate and break the rib again, but it looks good now. (If something happens again, at least we’ll have an idea that it’s rib and not just ‘random’ pain. . . .Ugh!!!) Dr. Sanders wants to see Sumana in November with an expansion surgery sometime after that.

When we first got to the office they took Sumana in for her x-rays. They always have trouble keeping the pelvic shield ‘up’. There was another missed photo op. It kept sagging and sagging and by the time the tech was ready to take the picture, the shield had to get strapped on again. Sumana and the tech just giggled and giggled. (I guess you had to be there!)

On the way back to the waiting area we hear, “Hey, Sumana!” It was my cousin Matt and his little guy, Brady. I think I’ve mentioned him before. He is a tough little cookie, battling neuroblastoma and scoliosis resulting from the tumor-removal surgery. What a riot to meet in the doctor’s office! After Sumana’s appointment we were able to visit with them before it was Brady’s turn to see Dr. Sanders. I was so proud to see Brady standing tall to get measured and weighed on the ‘big’ scale. Gone are the days of being afraid of doctor’s offices. God is soooo good! (By the way . . . that was ANOTHER missed photo op: Brady and Sumana meet in Dr. Sanders waiting room . . . UGH!!!!)

Well, the day kept on a-rollin’. We headed off to Mysore Woodlands and a yummy Indian dinner. One of the x-rays techs was from India and I asked what state she was from and what her favorite restaurant was in Rochester. She was from Punjab state (more Northern India), and her favorite restaurant was India House (where her dad is a chef!) She did say the Mysore Woodlands was the best choice for South Indian food (we totally agree!!)

Tuesday was Dosa Night, so in addition to a huge dinner buffet, we could order as many dosa as we wanted. There were 8 varieties to choose from. (We were so hungry I didn’t think of this missed photo op til we had finished eating!) I would describe dosa as the Indian equivalent to a flour tortilla. It is rolled and stuffed with potatoes and/or onions, cheese (cottage-cheese-type) and a variety of spices. Yum!!! I wish I had JUST eaten dosa . . . I ate so much off the buffet that I only got to try 2 dosa!!

Once again, Sumana drew a lot of attention from the staff at the restaurant. We met another waiter from Chennai (her city) and a chef from Nepal. He greeted her in Hindi and I reminded her of her similar Tamil greeting. He said Sumana means ‘good heart’ in Sanskrit. (I told him the name was ‘right on’!) It means ‘flower’ in Tamil. Sumana said the food and smells reminded her of India. I love to watch her eat at Indian restaurants. She uses her hand in the most elegant manner. It’s sort of a sweeping/scooping motion . . . really quite beautiful. AND, her face just glows.

After dinner we headed back to the same office park, but a different building. Miss Amy greeted us and got us situated in the BEST room for Sumana’s sleep study (it had it’s OWN bathroom . . . woo-hooo!!!) Since we needed the overnight bag, I finally had the camera. So, here’s one picture from our extremely busy day! By the way, Sumana slept really well and didn’t get disconnected from any of her sensors. That’s quite a feat! There were leg sensors, belly and chest belts, snore and breathing sensors, eye and jaw movement sensors, as well as brain sensors. That’s a LOT of wires!!! We’ll have a follow-up appointment in August.

Sunday, July 11, 2010

Busy Week Ahead

In all the heat last week we did manage to make it to Vine Valley one day. The lake water felt soooo good! I plan to do it again soon. The beach is only 3-4 miles away and it's so nice!

Last week's big news was that Jade got her permit! (She says to stay off the sidewalks!!! LOL!!!) This week we're off to Rochester for Sumana's post-op appointment and sleep study. We'll squeeze in a dinner at Mysore Woodlands between appointments. Sumana is pretty excited.

Today we went to a friend's graduation party. I forgot my camera . . . what a bummer! You should have seen Sumana playing with all the little girls. She had so much fun! She also got to see lots of her 'old' friends from Crosswinds. It's so traumatic for me to see all these grown-up 'kids' . . . how does that happen?? And I don't feel any older??????

Wednesday, July 7, 2010

What a Weekend!!!

The WHOLE Tielmann, Aubrey, Holman gang!

Sumana and Leah: coloring, game-playing, smore-eating buddies!

Sumana and Leah . . . fish girls!

What a perfect camping weekend!! The weather was gorgeous! Our campsites were in the shade and there was always a nice breeze at the lake. I think there were 19 kids ages 3-19 and everyone got along really well. Sumana loved all the little Aubrey boys, but played the most with her friend Leah Tielmann.

Sumana was really weak and unbalanced, so it was tough on mom. Sumana's wheelchair was no good on the rocky, bumpy paths so my plan A for transportation was out the window. However, Aubreys let us borrow their double stroller to get to and from the bathroom, so that was a LIFE SAVER! Even though she had a great time, I think the weekend was a stretch for her physically so soon after surgery.

This week is already full of appointments and responsibilities. We are going to squeeze in lunch with my sister and her kids today. The Happiness House has a new Wii game, so Sumana is motivated to do her exercises. (Exercises = Wii time at PT) Next week is her post-op appointment and annual sleep study. Yikes! What a(nother) whirlwind!

Friday, July 2, 2010

Camping Trip

Well, I won't be posting for a while. We're in mad-dash-packing mode for our annual camping trip. Thankfully we camp with two well-equipped families, so if we forget something it won't be the end of the world. I'm pretty excited about the weather forecast, too. We've had our share of rainy, cool (cold!) weekends, so this should be a treat!

We're meeting friends from college . . . The King's College . . . 80's era. At one point or another all six of us were in the college choir. We started camping together about 20 years ago, we missed some years because of new babies and schedules, but we've been fairly consistent the last 5+ years. It's so much fun and the kids always enjoy getting together (us grown-ups, too!!).

Hopefully there will be lots of pictures to share. Please pray for a safe and healthy weekend for Sumana. She has had a lot of pain again and has started back on her pain meds. I'm a little concerned to take her out in the middle of nowhere (literally!!), but she is two weeks post-op and has had a good week overall. So, talk to ya on the other side of the holiday weekend!

Monday, June 28, 2010

'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!!!