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!!!!

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."

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!!!

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.

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!

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.

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!