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!