Sumana's Faith

Finally, some FUN!!

2011-08-28T14:04:00.002-04:00

Sumana enjoyed a week at camp in July, but other than that not fun much has happened this summer. I was tired enough and just not myself so staying at home always sounded good to me.

After an MRI, EEG, sleep study and lots of blood work a friend suggested a trip to the chiropractor. That was the ticket. I had a vertebra pressing on my skull and limiting the flow of cerebral-spinal flow. As soon as my neck was adjusted I had a major head rush and immediately my vision was clear and colors looked bright again. Really strange. But, I'm really thankful. I go back to the chiropractor every couple of weeks for awhile to make sure it's fixed for good.

Sumana got good news from her sleep study. She moved oxygen and CO2 better this year which indicates that her lungs are stronger. She also saw the eye doctor again. Her vision has plateau-ed at 20/50 so that means that she'll start formal vision therapy in September. I'll have to keep you posted on what that entails.

So, back to FUN . . . Sumana and I finally made it to the George Eastman house in Rochester. It was just beautiful! Sumana is very interested in the 1890s to early 1900s . . . Edison, Ford, Eastman, etc, etc. We also visited Sonnenberg in Canandaigua. There was a very impressive art show. We spent most of our time in the mansion and the gardens.

Then, this week we took a trip to the Great New York State Fair! Sumana didn't remember going to the Fair 6 or 7 years ago, so it was truly a new experience for her. We watched the crazy high dive show, attended a circus, watched soap being made, and she ate a corn dog! What more could a girl ask for??

We started homeschooling last week and it's been a real pleasure for both of us. I 'gave in' and purchased hands-on activities that I knew she would enjoy. One of the items is a timeline. I can see already that this will help her place her history and hopefully remember it better.

Long overdue!!

2011-07-27T18:41:00.001-04:00

As always, things have been busy in our household and time seems to whiz by. Sumana had her sleep study earlier last week. Let me just say that the novelty of the 'thing' has long worn off. I had to DRAGGGG myself there, knowing that I wasn't going to get much sleep. Unfortunately, neither one of us got much sleep. Miss Amy got Sumana all hooked up to the sensors and was ready to turn out the lights right around 10:00, however, nature called and she had to unhook Sumana, let her 'do her thing' and then hook her up again, re-checking everything to make sure the wires were all working. It was almost 10:30 by the time we turned out the lights (about an hour later than her bedtime). Then at 1:30 a.m. we were up again, this time diarrhea was the culprit and then again at 5:45, (wake up call was at 6:15!!) UGH!!! She slept most of the way home, and I slept 4 hours once I got home. We'll know next week if they were able to get any profitable information from the study.

The later part of the week was Kids Kamp at LeTourneau. Sumana had a FANTASTIC time. Miss Emily was back again (she's been a counselor in training for 2 years, now she was promoted to THE counselor for Sumana's cabin). The heat was terrible and the wind was kicking up such big waves, the waterfront had to be closed. However, Sumana and Emily took to the slip and slide and had a blast. We borrowed an adult stroller for Sumana this year. She was rather mortified at using a 'stroller' so even though it was hot and there were a lot of hills, she hoofed it by herself all over the camp. She rarely used the stroller. (Maybe a little self-consciousness is good for her . . . it meant exercise in this case!!!)

This week we visited Great Grandma Williams at her beautiful new apartment and went to see Dr. Voter afterwards. Sumana's lungs continue to get stronger, in spite of her stinky attitude. I told the doctor that she 'grudgingly, but faithfully uses her cough assist machine.' Dr. Voter got Sumana to admit that the cough assist is helping her to feel better. Dr. Voter is awesome at use child psychology to its best advantage with Sumana. It's wonderful to see her help Sumana take responsibility for her overall health.

This week brings tests and doctors' appointments for ME, for once. Not that I'm proud of that, but it is strange to schedule MY appointments around the KIDS' schedules! I saw a neurologist Tuesday, my PA today, I have an EEG tomorrow, then an MRI and blood work on Friday. Woo-hoo! That's the way to get 'er done! They're trying to find an explanation for my speech issues and short term memory loss. They think it might be a delayed reaction from my rollover accident in February. The timing seems to fit, but that was over 5 months ago! Anyway, I follow up with the neurologist in a couple months. Hopefully things will resolve themselves as time goes on.

You need an update!

2011-07-02T15:30:00.002-04:00

I can't believe how the time flies. I apologize for not posting sooner. Sumana is doing really well, but is trying all kinds of new things. Once I find the cord to download pictures from my camera, I'll share a visual of her latest exploits.

First of all, she is getting nightly eyedrops to keep her left eye dilated and basically useless. This is to force her weaker, right eye to engage and hopefully improve its vision. The bummer I've encountered, though, is that she can't read AT ALL with this current regime. I called Dr. Harvey and he commented that he and I have differing and conflicting goals for Sumana. I need her to continue to work on her reading, he needs her to improve her distance vision from 6-10 feet. He suggested reading glasses to help us both reach our goals for Sumana.

Sumana now uses 2.0+ reading glasses for reading in both books and on the computer. I never have to ask her to put them on. They must make enough difference that she knows to wear them when doing close-up work. How cool is that? To work on her distance vision, each day I write spelling words and math problems on the white board and place it at one end of our kitchen. She sits at the far end of the kitchen and copies the things I've written for her. She knows this is for the benefit of her vision, but mom is happy that she's also reviewing spelling, reading and math while working on her vision! (I'm so sneaky!!)

For those of you who have kids with vision issues, check out this website: I met a family at the homeschool convention in Harrisburg, PA, who recommended Dr. Bowen and his website. He also has videos on youtube.com. He is a neurological optometrist and deals with alot of crazy vision problems. Quite often, he uses prism glasses to help his patients. Dr. Harvey has mentioned this treatment for Sumana once her vision improvement plateaus.

July promises to be a busy one with appointments. Mr. Ray will check out her orthotic braces soon and let us know if Sumana needs new ones. She has her yearly sleep study and then goes right to 4 days of Kids' Camp at LeTourneau. She sees Dr. Harvey again after that.

Another new addition for the summer is Aqua-therapy with Mr. Darryl from the Happiness House. (He works on Occupational Therapy with Sumana). Since I work Monday afternoons, Daddy takes Sumana to therapy. On Thursdays, she has her regular PT with Miss Becca. She's growing like crazy. I'll upload new pictures as soon as I can.

P.S. If that website didn't link up right, here it is again: www.simplybrainy.com

What an eye doctor!

2011-06-15T18:06:00.003-04:00

I must admit how pleasantly surprised I am with Sumana's new eye doctor, Dr. Paul Harvey. I have to really concentrate and put on my 'SAT' vocabulary ears when I listen to him. Even then, I need to ask for clarification, but who cares??? He's taking time to figure out Sumana's eyes and give us some direction to work with.

Sumana's eyes improved last time from 20/80 to 20/60. Today's exam wasn't very remarkable: she's solidly at 20/50. However, Dr. Harvey was able to diagnose some more issues. He has already learned that Sumana has blind spots in her field of vision and she has NO depth perception. Today he was able to determine that at close range Sumana sees double, then as an object moves away, from 4ft to 8ft, her right eye shuts completely off. Then beyond 8 feet it'll come back and try to work with the other eye. Isn't that amazing?

Our next plan of action is to apply eye drops every night at bedtime. This will relax her good eye and MAKE her weaker eye work. We will still continue to patch periodically throughout the day to give her an even greater workout. She will be re-evaluated in 6 weeks and then he'll do more tests and give us some exercises depending on his findings. Dr. Harvey is hopeful that we can correct some of these visual problems AND (get this . .) possibly DEVELOP some depth perception. But, of course, that's WAYYYY down the road. I'm just sooooo thankful to have a local eye doctor who is willing to stick with Sumana and try out different things. What a huge blessing.

Crazy Good News!

2011-06-01T08:35:00.002-04:00

Dr. Sanders measured Sumana's x-rays yesterday. Her curve improved from 28 degrees to 18 degrees! (The curve was over 50 degees when we started with the VEPTR surgeries). He also checked her skeletal age by examining an x-ray of her hand. At the most, he thinks she has a year of growth left.

So, because of the improvement in her curve, the fact that she would need brand new rods at the next surgery and her remaining expected growth, he recommended that we leave her alone and let her GROW! Woo-hoo! That means no surgery in 4 to 6 months . . . only a follow up appointment in November. Is that awesome news, or what?? Sumana is so excited!

Also, Dr. Sanders and Dr. Rubery are forming a nationwide study of kids with early onset scoliosis and their treatment. Sumana is 'Number 33' in the study. So some day if you're reading up on the treatment of kids with scoliosis and you come across 'subject 33' you'll know it's Sumana! I'm really pleased to have her participate in the study. It will outline her history and treatment and the resulting effects as she grows. Pretty cool, huh?!!

Recovery Report

2011-05-30T08:25:00.002-04:00

Sumana has recovered so well from her latest surgery. Dr. Sanders excised some of the scar tissue and the new scar looks so good! She had the crazy itching for a couple weeks as usual, but no complications. We go for her follow up appointment with Dr. Sanders tomorrow (Tuesday). After her appointment we're going shopping for clothes. This kid is growing like crazy! She's outgrown children's sizes so our goal is to figure out what size she wears in junior/misses clothes.

We're winding down with school as well. In spite of all the ups and downs and interruptions, we should be done in 2-3 weeks. Yea! Sumana is finishing up her standardized testing this week.

I need to cut this short. I'll try and update later. We're off to the Memorial Day parade.

The Flood of 2011

2011-04-27T20:54:00.010-04:00

Wow. Check out the pics of our flooding. This has happened 5 or 6 times in the last 2 weeks, each time is a little worse because the ground is so saturated and the rivers so swollen. We just noticed a little water in our basement. Others have had it much worse. We've lived here 19 years and I have NEVER, EVER seen anything like it.

I'll have to get pics from up above our house. The pond is overflowing with all the streams coming through. Andrew and I counted 6 new independent streams coming down the hill. Yikes! To top everything off, we had a full-fledge tornado WARNING tonight. We didn't have any trouble here. I guess I'll have to check to see what was reported in the wider area.

Here's Jeffrey checking out the drainage pipe that goes from west to east. You can see the spray of brown dirt toward the bottom of the pic . . .sorry it's so blurry!

This is our neighbor's overworked drainage pipe!

Under 11 hours!!

2011-04-18T18:40:00.002-04:00

It's a new record! It was just over 10 1/2 hours door to door today AND, yes, Sumana did have surgery! She didn't go in til 11:10, was out by 1:30 and on the road home by 4:30!

Her lungs sounded pretty good at 9:30, but they wanted her to have another nebulizer treatment before surgery. Dr. Sanders looked at her x-rays again and he found a way to eek out another 2-3 cm on her current rods, so he changed his plan to a simple expansion, instead of the more involved rod replacement.

Everything went well and aside from the usual pain, Sumana seems to be doing well and is very happy to be home!

Surgery?

2011-04-16T11:47:00.002-04:00

Sumana saw her primary doctor Thursday and received pretty good news. Her lungs sounded clearer than they had a week earlier. We're still a little unsure about surgery on Monday. We are supposed to arrive at the hospital at 8:30. The anesthesiologist will have the final say whether the surgery will happen or not.

In the meantime we have Sumana taking regular albuterol nebulizer treatments and playing Wii Fit or treadmill to try to clear her lungs. Please pray that she is all clear on Monday. I'd love to see her in new rods . . . she's growing so fast!!

I'll keep you posted!!

Pneumonia . . . .:-(

2011-04-08T20:13:00.002-04:00

So sad. Sumana went from a cold on Wednesday (we did see the doctor and got her started on a steriod) to bronchitis (took her to the ER for shortness of breath) to bacterial pneumonia today (back to her doctor's office). Her O2 sats were around 93 yesterday and today. If they get below 89 they would admit her to keep her on oxygen. Those numbers are too close for my comfort!! The poor kid! She is acting okay, but the coughing really hurts her chest and ears.

The doctor doesn't think that she'll be able to go ahead with her April 18th surgery. I'm afraid she's right, but I don't even want to consider what that might mean. Dr. Sanders was booking into July a month ago, so unless he can squeeze her in somewhere, we'll be looking at August at the earliest. As much as I'd like to get the new rods in her back, I really don't want to take a chance with her weakened lungs. The whole ventilator experience is a once-in-a-life-time thing as far as I'm concerned. Been there, done that . . .don't wanna do it again!

So, please pray for healing and wisdom for us. I'll contact Dr. Sanders office next week and see what they say.

Here's a quick, funny story: After her doctor appointment we went out for lunch. She sneezed so hard and unexpectedly, that she knocked over her glass of ice water. It dumped across the table and into my lap!!! Where is the video camera when you need it? She was sooooo startled (me, too!). It was sooooooo funny! Wish you could have witnessed it!

Improvement!

2011-04-06T08:58:00.003-04:00

I must say I'm pretty close to speechless . . . and that doesn't happen very often! Sumana saw the developmental eye doctor yesterday. I looked back at older posts and she has tested as poorly as 20/70 in her right eye. Yesterday she 'almost' made it to 20/50. I think I've mentioned how much she has resisted patching her right eye. She was supposed to be patching her eye 2-3 HOURS a day. In reality she has been doing it about 30 minutes a day. . . if that. When we went to the doctor yesterday I didn't expect to see any improvement, in fact I expected to have to accept the fact that she was nearly blind in one eye.

I can't even begin to express how stunned I was to hear that there had actually been improvement in her right eye. The doctor is not even close to being ready to talk about corrective lenses or visually adapted reading materials. He wants to see her get to 20/30 and THEN he'll have her start vision therapy (more exercises!!) and THEN maybe talk about corrective lenses.

Because Sumana has been so resistant to patching, the doctor explained WHY she needs to do this. He explained that to drive, you need to have a certain level of vision. He told her that it is only for 10 weeks and if she is faithful, he won't have to prescribe eye drops (which she hates). Once her right eye is strong enough, he told her that he can help her train her eyes to work together as a team. (They probably have never done that before). When they are working together correctly, she won't have the blurriness and double vision (that's from the left, dominant eye taking over for the right eye). I think the doctor got through to her. She only has to patch her eye two hours a day and it can be for 20 minute intervals throughout the day.

I am so relieved! I have been making plans to buy a Nook and subscribing to a large public library to try to get reading materials for Sumana that have a larger font. I've been concerned about all of her school subjects and the small size of the font that is used as the kids advance. The doctor told me how to make a typoscope for Sumana. This will help isolate one or two lines of reading material, and he says that's all the assistance she needs at this point. He showed me the type size that she can read and it is the size of most of her books or even smaller. Her problem is with crowding and with the typoscope, that will help eliminate that problem. How cool is that??

Anyway, please be in prayer for our girl. Sumana picked up a really bad cold this week and it's gone to her chest. She doesn't have a fever yet, but the albuterol and cough assist aren't helping. We'll be off to the doctor's today or tomorrow. Sigh . . . She's pretty concerned because she is anxiously awaiting her surgery April 18th and doesn't want anything to get in the way of that! (What a trooper!!)

NC was a GREAT break!!

2011-04-03T16:23:00.008-04:00

Sumana, Andrew and I had a FANTASTIC time visiting Papa and Nana in North Carolina. It was a fun, relaxing time and just what the doctor ordered! The weather was fantastic . . . no rain, lots of sun and it even hit 80 at the beach one day. Woo-hoo!

When we got back (after driving through snow . . . ugh!), Sumana had her pre-op appointment. She's all set for surgery April 18th. I still need to verify that Dr. Sanders is swapping out her rods for new ones. He was not at the pre-op appointment. Last time we saw him he planned to give her longer rods. The way she's growing, she needs them!!

NC here we come!

2011-03-11T11:34:00.003-05:00

It has been probably one of the most stressful weeks of my life. Without going into detail, we had to ask to have our foster daughter removed from our home. It is always difficult to be forced to choose between your own children and another who needs you. However, in reality there is no choice. We always have to protect our own kids' best interest. Please pray for Jade, because this transition will be very difficult for her. It will be a good chance for her to really see that Jesus is the only true constant in her life. It also is a good chance for me to get out of the way and watch God work.

I really need a break, so we're heading to North Carolina a bit earlier than planned. I'm really thankful my parents are flexible and that I have good friends at the libary willing to cover for me while I escape. Sumana and Andrew will go with me. We're all looking forward to a change of pace. Gretchen will spend the week in Arizona with one of her best friends. Jeffrey and Greig both have to work, but seem to be looking forward to some peace and quiet!

I'll try to get some fun pictures to share when we get back. There are always lots of wonderful photo ops!!

My Radar

2011-03-06T19:53:00.002-05:00

Huh . . . so much has been going on the last few months it hasn't even registered on my radar that Sumana has surgery coming up. April 18th is not that far away. I guess it's a really good thing that I've practically forgotten about it. That shows that Sumana is doing well and I'm not anxiously awaiting a needed surgery. This one is definitely needed, but I guess I don't see the physical signs in Sumana that make me wish a surgery date would hurry up and get here.

Sumana has been very healthy this winter season. I think she's had two colds, but got over both with relative ease. (I was recounting to someone at church today about how she used to catch every little cough that went around and it would immediately turn to pneumonia). She has been busy with AWANA, birthday parties for friends, an AWANA girls' overnight, etc., etc. It is such a relief to be able to let her go to these events and not worry about her catching something.

This next surgery will replace both VEPTR rods. After the last surgery, Dr. Sanders told us that she has outgrown both rods. Sumana has her pre-op March 23 and we're hoping to go on vacation the 24th (to my parents' in NC). Then it'll be just a hop, skip and a jump and she'll be up for surgery. It'll be nice to get this one out of the way before summer.

Greig's new van!

2011-03-01T18:46:00.003-05:00

So, I think we’re finally done car shopping. “Oh, what a relief . . . it is!” I got the 2007 Sienna about 2 weeks ago and today Greig brought home a 2002 Sienna. Supposedly both models are the ‘base’ models, but Greig has a bunch of goodies that I don’t have. (I’m not bitter, though!) Greig has dual power doors, an automatic hatch opener, daytime running lights and privacy glass. Woo-hoo! La-dee-dah! I have 75K fewer miles . . .so I guess I’ll be very happy with that!

I am very thankful, though. As awful as it is to lose two vehicles in about 2 weeks, none of us were seriously injured. AND, we got really good settlements for our old, high-mileage cars . . . much better than we ever could have sold them for. The really good news, too, is that we only have one car payment. I really see these circumstances as gifts from God. It’s kind of funny, too. We now have 3 Toyota vehicles out of 4. We just need to convert Gretchen!! I hope this means we'll be visiting our friendly mechanics less frequently!!

I didn't look at my earlier posts, but it's worth mentioning again. The van doors are so light that Sumana can open and close them by herself. Yea!

Our NEW GREEN Van!

2011-02-21T17:18:00.007-05:00

Well, with minimal sweat and tears, we have a new van. It is not a twin of my beloved Astro, but it is a good van, nonetheless. We found a 2007 Toyota Sienna in Greece (NY!). It only had 27,000 on it when we got it. It is their base model, but is more than adequate to meet our needs. The doors are light enough that Sumana can open and close them herself. It also has 'quad seating' so Sumana has her very own seat. I like the way she fits in the seat MUCH better than in the Astro.

The Astro, by the way, was totalled. The last pictures I posted didn't look too bad, so I asked Greig to take some more pictures. I've posted one that show fairly well how the roof was smooshed down nearly to the back of the driver's seat. I guess that's why my head and neck hurt so much. Probably any more 'smooshing' and my neck would have broken. Yikes! A very sobering thought.

I'm now working a three-month job at the Red Jacket Community Library in Manchester, NY. I had to work on Saturday, so despite the horrible weather I drove to and from work. I wanted to turn around many times, but I kept plugging along. Even though it took nearly 1 hour (normally a 30 minute trip), I made it safe and sound. By the time I reached home, I felt very good about our new van. It is just a standard front wheel drive, nothing fancy . . . but it handled very well in the snow and wind.

Our latest 'drama' is that Greig was rear-ended yesterday. It wasn't his fault, but it makes another headache to deal with. He so graciously handled my mishap, I wish I could help him with this one. However, he knows all the collision people, so he'll be in a good position to work through this problem. Since his van is 14 years old, it will probably be totalled with just the rear hatch damage. He definitely has some whip lash to deal with, too. Please pray that we can work through this as smoothly as we did my incident.

Also, keep Sumana in prayer. She is very stubborn about wearing her eye patch. I know it's because she can't see much . . . but she needs to try to strengthen the weak eye.

My poor Big Green Van

2011-02-10T16:47:00.003-05:00

This post has nothing to do with Sumana, except that 'her' vehicle was involved. I was on my way to get Jade last night from work and hit a huge section of 8 inch deep, packed snow. I was going slower than usual, but still way to fast for what I encountered. Long story short, I did a 180, went over a steep bank, rolled over completely and landed in 4 feet of snow. Gavin was with me and, thankfully, was well restrained in his car seat.

The roof was ripped down the center and Gavin and I were covered in snow, but no broken glass. We were able to get right out of the vehicle. We got checked out at the hospital and were home by midnight. No cuts, scrapes or broken bones. Gavin seems 100%, I'm just very bruised from the seat belt. I'm so thankful for God's protection. The doctor called it a 'near death experience'. Wow. It all happened so fast, I still haven't processed that part of the event. I'll keep you posted on what happens as far as our transportation for Sumana. She doesn't have many appointments for the next couple of months, so except for my work and Jade's work and appointments, we should be ok for a while.

Thanks for the encouragement!

2011-02-06T19:49:00.002-05:00

I just wanted to post quickly to say 'thank you'. I had hoped not to sound too discouraged in my last post, but I guess it came across that way. I know we've done all we could and done what we thought was best for Sumana all along. It is frustrating to find ourselves at this point. However, it is good to remember that we're finding this out now when she's twelve instead of in five or six years.

Also, there is plenty of hope for treatment, even if her eyes do not improve through patching. I guess the good news is that we can still help her progress in reading. I actually am looking into getting an e-reader for Sumana to enlarge the print of books that are the next step 'up' from where she's at now. At any rate, I'll keep you updated as things happen. Thanks, again, for your encouragement!

Unbelievable!

2011-02-01T21:22:00.003-05:00

"If I had seen her when she was 4 or 5, I probably could have helped her. I'll still try, but I'm not very optimistic." That's pretty close to a quote from Sumana's new eye doctor. UUGGGGGHHHH!!! Hello . . . .!!! Sumana had her first eye exam within 4 months of coming into our home and we were sent to a pediatric eye doctor. Like I ranted in my last post, I thought that I was doing what was best for her . . . taking her to a specialist. Now, 6 1/2 years later we find out that something more could have been done. I know God has used circumstances and different doctors and friends to lead us on the paths that we have taken for Sumana thus far, but when you hear what we found out today, I think you'll feel my frustration.

Sumana had test done today that she has NEVER had done before. I guess some of the tests are usually only done on adults, but none-the-less, as she completed each one, the doctor was able to get a much clearer view (pun intended), of how Sumana's eyes function. First of all, on a standard 20/20 scale, her right eye tested a bit better than last Friday: 20/70, left eye was a shaky 20/25. Not much new there, BUT the doctor did a depth perception test (you know the ones that have a lot of dots and you have to tell what picture pops out at you??). He quickly found that Sumana has NO depth perception! ZERO! Unbelievable!

Here's a side note so I can beat myself up a bit: Sumana has the classic habit of reaching up onto 'my' counter of junk to reach something that is hers. Usually her stuff is in the middle of the counter behind a bunch of other junk. Inevitably, sh knocks a ton of stuff off the counter; once it was a vase of flowers . . . what a mess! Well, I'd usually 'yell' at her and tell her to be more careful. Guess what? Everything must have looked like it was lined up to her, not in front or behind what she wanted. I'm trying not to feel too guilty, but I do feel bad to find out that it wasn't poor motor planning or impulsiveness that caused the accidents . . . she literally didn't see the depth of the objects.

On to the exam. The doctor also did color testing. He was 'gushing' about how girls are so good at telling colors and boys aren't. Sumana's left eye did great, however her right eye has a hard time distinguishing the color red! Unbelievable!

Now, as far as the 'lazy'eye that started this whole quest in October: He reconfirmed what the ABVI doctor said about double vision being a good thing. It shows that her right eye is still trying to function. It hasn't totally shut down. When he looked at her optic nerve he saw optic nerve pallor (pale color--not much blood flow) and optic nerve atrophy. He explained the the central nervous tissue does not regenerate like normal skin does. It doesn't grow back. That's why he's not real optimistic about getting much improvement in Sumana's right eye. (By the way, that damage probably happened at birth. Further damage could have happened in October. He hopes to retrain the newly damaged nerve to restore some of her focus).

The doctor also did a visual field test. It tested Sumana's peripheral vision. Not surprisingly, the left eye tested quite well. However, the right eye test indicated she was blind in the right eye. We know that's not true, however it does suggest that she has A LOT of blind spots in her right eye's field of vision. UNBELIEVABLE!

His plan of action is to have Sumana wear a patch over her left eye 30 minutes in the morning and 2 hours in the afternoon or evening. He hopes to force the right eye to re-engage and improve her 20/70 vision. As long as he can get improvement, we will continue to patch the eye. Once he feels we've reached her best possible vision, he'll start to work on methods of correction. Despite what other doctors has said about Sumana's vision not being correctable, THIS doctor corrected her vision TODAY to 20/30. So take that! (can't you FEEL my attitude tonight??!!!)

The sad part and potentially telling fact, though, is that when Sumana used the patch tonight she could not see where she was going. She kept asking where things were so that she would not bump into something unexpectedly. It was so hard on her that she only wore the patch for two 10 minute tries and one 5 minute try. I'm hoping she can progressively get used to the patching; however, this initial try has us so overwhelmed that it's hard to believe you can get something back that's not even there. I guess the amazing part is how her left eye has taken over to help her function so normally. God's amazing design. If Sumana never gets any improvement, at least she has what she has now and we know it's worked for her so far. Who would have thought her right eye was so bad?? Why didn't any other doctors ever notice this???? Unbelievable!

So, we're trying the patch 'thing' for 2 months, then getting a re-check with this doctor. Then, he expects another follow up 4 months later. At least we're trying to address this issue now and not much later. She is reading at a 3rd grade level and has reached a standstill because of double vision, blind spots and general blurriness. I'm going to look into reading materials that have large fonts and lots of white space. I know of several possibilities. Maybe if she can read increasingly more difficult passages in this format, she can progress with her reading even while we're trying to figure out this eye puzzle of hers.

Well, I've rambled enough and didn't even touch on the horrendous roads this morning or Sumana's appointment with her pulmonary doctor. Suffice it to say, she's doing well. She needs to restart her cough assist exercises and needs to resume using her inhaler spacer to ensure she gets all the aerosol into her lungs for the most benefit. Her lungs are about 50% the size of a comparably sized and aged child. Her doctor wants to increase the muscle tone around the lungs and force expansion of the lung cavity to increase her potential to knock out viral infections and to give her the stamina she will need to continue walking (and other activities) as her body grows. I think it is lung capacity numbers that started around 30 percent and now she's up to 52%. Definitely better, but it needs to get much better. She still is diagnosed with restrictive lung disease. That's it in a nutshell! Good night!

The Problem with Assumptions

2011-01-29T09:31:00.004-05:00

I think I must be the Queen of Assumptions. It is not a crown I wear proudly. This time I think it was a truly innocent/ignorant kind of assumption, but I think it's caused some delays in helping Sumana, none-the-less.

I ASSUMED way back when Sumana came home that a pediatric opthalmologist would address any issues that came up with her vision. I thought (assumed) that instead of taking her to Canandaigua, (like the rest of the family), going to Rochester to a 'specialist' would meet her needs. I guess I was wrong.

Sumana and I went to the Association for the Blind and Visually Impaired (ABVI) to get their doctor's opinion about some visually problems she seems to be having. Within 10 minutes I knew the pediatric ophthalmologist had not done her any favors. (As a disclaimer, she's seen TWO different pediatric eye doctors; it's not that I have a problem with either of them, I just found out that they had us 'barking up the wrong tree').

Within a short time we found out that Sumana's left eye is much stronger than her right eye. The strabismus that showed up in October was, in fact, likely due to increased pressure on the fibers running through the optic nerve. The pressure probably interrupted the innervation between the eye and the brain and 'helped' to 'shut down' her right eye (thus, the wandering began). The good news is that Sumana's double vision is a sign that the right eye hasn't TOTALLY shut down yet. With therapy, it can probably be trained to work properly again.

VISION THERAPY?? Until about a week ago I had never heard of it. Sure, there's physical therapy, speech therapy, mental therapy . . . why not vision therapy? I read an article about a week ago in our state homeschool magazine that addressed many questions I had about Sumana's academic progress. I was convinced that her academic problems are largely due to visually problems. AND, I also started looking into vision therapy computer programs. In addition, a friend of mine mentioned she had heard of another child who had just completed vision therapy. Huh . . .??!!! I guess it is out there, just another option I hadn't heard about.

So, back to the pediatric eye doctors: I have been told Sumana's optic nerve atrophy makes her vision uncorrectable. At the most, she was given a simple eye exercise to try to refocus her eyes when the right one strays. In just a short time, ABVI's doctor recommended a developmental opthalmologist. What? That's another thing I've never heard of! And, get this, he's in CANANDAIGUA!! UGH!!! I've been traipsing to Rochester all these years and the doctor Sumana needed was right near us!! UGH!!!

I know this is all in God's timing, but it is rather frustrating to find this out six years after beginning visual tests. I also know, that the incident in October probably made us more aware of her issues and some possible causes.

Back to the ABVI appointment: We also found out that Sumana has multiple blind spots. These are areas that she literally can't see. She called out letters off an eye chart and skipped the same one over and over. This happened in three different areas with one eye and two times with the other eye. I almost feel guilty for getting frustrated with Sumana when she would skip words in a story she was reading. Huh . . . she couldn't even see them! No wonder I had to completely isolate the word for her to find it.

The ABVI doctor didn't give Sumana a full exam with recommendations, because she felt the developmental eye doctor should be our next step. However, Sumana did experiment with magnifiers and prisms and both helped her see nearly 20/20. (That's amazing, considering her right eye tested at 20/80!) So much for not being correctable! She may not wear a traditional pair of lenses, but there are specialized lenses that will definitely help her. Yea!

So, Tuesday morning we go to meet with the developmental opthalmologist. It will be interesting to see what he recommends. It probably will be some type of vision therapy. We'll just have to wait and 'see'. (ha, ha!)

Also, on Tuesday, Sumana will have her annual (or is it semi-annual?) appointment with her pulmonologist and respiratory therapist. We have not used the cough assist machine in six months. I hope we don't regret it, but I guess it'll be a good test to see if she really still needs it. She is so fed up with PT exercises, eye exercises, OT exercises, etc., etc., that I've let the cough assist slip. (She really is developing a very strong opinion and sees great injustice that no one else has to do all the exercises that she does. Forget the fact that it makes her stronger and healthier . . .I guess that doesn't matter to a tween!)

So, I've learned that I need to ask more questions and if I don't like the answers I get . . . look harder to find someone who might be able to find the best answer for Sumana. There are so many new options available today that Sumana's future is going to be very bright. We just need to get her the correct type of help and encourage her to do her best!

Busy Time

2011-01-21T12:10:00.002-05:00

As always, we've been on the run. Just to give you an update, Dr. Silberstein (neurosurgeon), is pleased with Sumana's recovery since he placed the new shunt in October. Unless she starts to get unexplained headaches, he doesn't need to see her again for another year!!! Yea!

Sumana does continue to have a lazy eye (strabismus). I thought it might still be related to her shunt because the symptoms began just 2 weeks before her surgery. However, Dr. Silberstein said he does not think it is related. I have seen Sumana's reading progress plateau over the last year. Moving to chapter books has been very difficult for her. Her eye doctor said she has permanent optic nerve damage from birth and her vision is not correctable. Since her vision seemed to test ok, we've just 'gone with it.' Now, though, I'm not so satisfied.

Next week Sumana will have a low vision exam at the Association for the blind and Visually Impaired. I don't know if she'll qualify as visually impaired, but I guess it makes a logical next step. The association has lots of resources available. I've actually had their phone number for THREE years! And I never called! UGH!! Anyway, if they determine her vision is ok, then I'll start looking into developmental disabilities. However, she does much better with books in large (giant, actually!) print, so I have a feeling she has some kind of visual problem. I guess we'll know more next week.

Gretchen goes back to college next week and Jade starts back up with work at the college. I've inquired about part time work at two area libraries, so I may be back working soon, too. Jeffrey LOVES his new 'permanent' bank home and starts additional training in February. Andrew is looking forward to turning 15 in February so he can apply at Wegmans! Gavin is 14 months and is starting to get the hang of walking. Greig still likes his work with Olan Mills, but he's only working 2-3 days a week, so that's a bit rough on the pay check, but it's the season, I guess. I'll try to update when we have more Sumana news. Take care y'all!

Progress!

2011-01-10T08:16:00.002-05:00

Sumana's back pain is virtually gone. She is back to doing her PT exercises and stretches. She has a final electro-stimulation on Thursday. I think the combination of exercise/stretching, e-stim and more movement in general have helped her get past the pain.

She saw her neurosurgeon on Friday and he is pleased with her recovery. She will only see him once a year now! The doctor did not think her 'wandering eye' was related to her shunt, so now we're on to other causes. It's just strange that her eye began to wander 2 weeks before the shunt issues . . . it was better immediately after surgery, but it has been really bad the last month. She sees Dr. Gearinger (eye doc) in February. I've also asked for help from the Association for the Blind and Visually Impaired. She has plateau-ed in her reading ability and I want to find out if it's related to her optic nerve damage, wandering eye, or what?

Her next surgery is April 18th and it will be a VEPTR revision. That means that Dr. Sanders will remove the outgrown rods and replace them with new ones. Sumana is pleased that we were able to schedule surgery on a 'non-AWANA' night so she won't miss out on the fun.

Possible Answers

2010-12-22T08:08:00.002-05:00

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.

We owe you pictures!!!

2010-12-18T16:18:00.002-05:00

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!!)

Sincere Apologies . . .

2010-12-05T20:30:00.002-05:00

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.

New Record

2010-11-16T11:06:00.002-05:00

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!

Late Monday Surgery . . . .

2010-11-12T22:25:00.002-05:00

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!!

Fun Visit and busy week ahead

2010-11-06T17:11:00.002-04:00

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!

OK . . . so there are 34

2010-10-30T20:18:00.002-04:00

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).

Quick explanation

2010-10-29T21:06:00.003-04:00

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!

2010-10-29T17:51:00.005-04:00

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!

Surprise (??!!)

2010-10-28T16:37:00.004-04:00

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!!)

Back from Rochester

2010-10-26T17:27:00.003-04:00

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.

Lots of appointments tomorrow!

2010-10-25T18:39:00.002-04:00

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.

'Hi' from Sumana

2010-10-16T14:54:00.002-04:00

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!!

We're back!

2010-10-09T19:25:00.009-04:00

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!

2010-10-02T19:46:00.002-04:00

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!

2010-09-22T19:54:00.003-04:00

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

2010-08-29T16:48:00.017-04:00

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????

2010-08-21T11:25:00.003-04:00

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!

2010-08-10T19:12:00.008-04:00

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!

2010-08-01T18:38:00.008-04:00

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!

Camp Re-Cap

2010-07-26T08:11:00.007-04:00

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!!!

Kids' Camp!

2010-07-22T14:42:00.005-04:00

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

More Library Fun

2010-07-20T16:35:00.006-04:00

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!

Reading to the dogs!

2010-07-17T19:19:00.003-04:00

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!)

Camera in the car

2010-07-14T12:20:00.003-04:00

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.

Busy Week Ahead

2010-07-11T18:39:00.004-04:00

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??????

What a Weekend!!!

2010-07-07T07:31:00.005-04:00

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!

Camping Trip

2010-07-02T07:21:00.002-04:00

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!

'bout time for an update!

2010-06-28T18:16:00.007-04:00

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

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

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

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

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

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

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

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

New Dressing

2010-06-24T10:09:00.002-04:00

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

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

Doing Better

2010-06-23T15:51:00.003-04:00

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

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

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

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

PT (Pain and Torture)

2010-06-21T15:56:00.002-04:00

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

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

Yesterday in Word (pictures follow!)

2010-06-19T10:59:00.005-04:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yesterday in Picture

2010-06-19T09:01:00.019-04:00

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

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

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

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

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

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

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

12 1/2 hours door to door!

2010-06-18T21:24:00.002-04:00

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

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

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

Surgery Tomorrow (Friday)

2010-06-17T13:23:00.005-04:00

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

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

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

Gotcha Day #6

2010-06-15T07:01:00.003-04:00

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

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

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

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

Crazy week behind us, another one ahead!

2010-06-13T15:54:00.005-04:00

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

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

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

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

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

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

Forgotten Excitement!

2010-06-05T19:29:00.002-04:00

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

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

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

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

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

Back to 'just us'

2010-06-02T21:10:00.002-04:00

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

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

More Info

2010-05-28T19:56:00.002-04:00

I forgot to tell you one other thing Dr. Sanders commented on Wednesday. He said that Sumana's x-ray in the lying position showed that her scoliosis was 'good.' She really looked pretty straight. I forgot my camera . . . AGAIN . . . so I don't have the pics to show you.

Also, I have a pretty good handle on appointments for our summer. It's amazing how similar it looks to last summer. After Sumana's surgery she has her annual sleep study and a post-op visit the same day. About a week later she goes to camp. Then, she has a follow-up sleep study appointment, pulmonary check up, an eye exam and a dental cleaning thrown in for good measure! Whew! And that's just Sumana's appointments! Gretchen has her surgery in mid August and Jade and Gavin have a bunch of appointments, too! Whew! It'll be another busy summer! Thankfully, most appointments are routine check ups and only happen once a year.

We're enjoying having Grampy and Grammy with us. They are so much help around the house and they're so willing to help with transportation it's a real plus to have them around! Grammy said we should have a deli counter for knowing who's turn is next in the bathroom! Other than sharing the bathroom and dancing around each other in the kitchen, it's been fine having extra bodies around! They'll be here til Tuesday so we're cramming in as much fun as we can!!

Surprising Pre-op Appointment

2010-05-26T17:33:00.002-04:00

Hmmmm. I guess that migrated rod broke the rib it was attached to. I guess I thought it had come loose and moved up into another rib, but no . . . it cracked the rib it was attached to. It means both good and bad news. The good news is: the rib has healed well and Dr. Sanders is only going to extend that rod (the one closest to her spine) . . . he's NOT going to replace it. The bad news is: the rib may crack again under the pressure of extending that rod and he may have to reattach the rod to a lower rib.

Dr. Sanders thinks that he can replace just the lower part of the rod farthest from her spine. Again, this is good news because it is less invasive. He doesn't expect to need a chest tube and he's hopeful that Sumana will come off the ventilator well again. All this being said, he is planning on keeping her one night for observation, but makes no promises that she won't be staying longer. I guess I'm hoping it goes like February's surgery and we can even escape the same night. (Wishful thinking . . . but actually, we WANT to stay in the hospital this time so we can hang out with our little friend Giana and her mom. Giana is having VEPTR surgery 4 days before Sumana).

Dr. Sanders was really pleased to hear that Sumana successfully navigated through two colds this year with no complications, (i.e. pneumonia). As he was leaving he said the nicest thing: "There are some people who bring a smile to my face every time I see them and you're one of them!" Does that describe how most people feel after they've been around Sumana??? What a treasure! Now that I'm starting to see more 'teenage attitude' from Sumana, I really have to remember compliments like this. As frustrated as I can be with her sometimes, I want to keep 'it' in perspective with her whole personality.

So, it was a rather unusual pre-op appointment. Dr. Sanders did the entire history and physical (not his resident or NP), and his news was potentially optimistic. I guess I had anticipated an entire re-do of the initial surgery and that will not be the case. Please start praying now that Sumana's body will be strong and healthy for her June 18th surgery.

Speaking of praying, please pray for our 22 month old friend Giana (Sumana's VEPTR buddy). She has had unexplained fevers for something like 6 weeks. We had planned to visit with her before our Dr. Sanders appointment, but she was in for testing today at the hospital. Please pray that the doctors involved in her care will find the cause and treat her promptly. Thank you!

Gretchen's Party!

2010-05-24T15:56:00.004-04:00

Gretchen's belated high school graduation was yesterday at LeTourneau Christian Camp. The weather was absolutely BEAUTIFUL!! So good, in fact, that a lot of the teens jumped in the lake!!! BRRRRRR!! She had over 80 people join her for food and fun. Sumana enjoyed playing with all the 'little people' that joined their parents and siblings.

Grampy and Grammy came all the way from Northern Maine and cousin Brittany came in from New Hampshire. We've had so much fun! (Even though 11 people in our house is kinda crowded!!!)

Grampy and Grammy will be here for another week, so I'm leaving our days as open as possible. Wednesday is Sumana's pre-op appointment, though. I'm hoping to get Dr. Sanders' opinion on what the hospital stay might be like this time. Since her lungs are so much stronger I'm hoping for a much shorter stay. The only other problem might be the chest tube . . . if she needs one again. They had to keep it in her longer than expected last August. I'll pass along what we find out. Again, the surgery is scheduled for 11 am on Friday, June 18th.

It's been a good feedback weekend!

2010-05-16T19:33:00.002-04:00

We've gotten lots of good feedback and encouragement this weekend. For starters, one of our special friends from Crosswinds is going to use Sumana's story for a class she's taking. It's rather humbling to think of others sharing Sumana's story. I think it's a pretty cool story, but that OTHER's think that, too???!!!

My group at Sunday School was really encouraging, too. I was bragging on how well our kids accept foster kids and welcome them into their circle of friends. One person said, " well, it's because you've groomed them for it." I thought that was a rather odd thing to say, but with a tweak in the wording, I could agree with it. "GOD has groomed them for this." We started out getting a homestudy through the county because it was free and we needed one to adopt. Then, we felt led to care for babies and preschoolers. NOW, 8 years later . . . TEENAGERS???!!! I really can't believe it. I NEVER would have seen us doing this. In fact, I clearly remember saying that we would 'consider' any younger children, but NOT teenagers!

So, I guess through all these years, GOD has groomed us ALL for this ministry. And, it really is a ministry. We could never do this without God leading us and giving us the grace to get through each day. He ministers to us, so we can share His love with the children He brings into our life. More coolness!

Sumana has just LOVED having a baby in the house again. She and Gretchen don't mind at all if he wakes up at 5 or 6 for a bottle; and if Jade needs any help, Gretchen is right there. THEN, they just all go back to sleep! It's pretty amazing! Tonight, Gretchen took Jade and Gavin out for ice cream. Oh, yeah! Last night Jade left the baby with me so she could go to Jeffrey's band's show. Like I said earlier, I love how our kids include our 'new' kids and make them feel so welcome. It helps Greig and me a ton to have not only their support, but their involvement. I'm just feeling really 'filled up' tonight and I'm very happy to share it with you!!!

The Quiet you hear is GOOD!

2010-05-15T19:12:00.002-04:00

Well, once again, 'QUIET' on blog front means we're busy. We've had lots of appointments for our new family members, as well as our usual PT and work schedules. Busy has been good and NOT STRESSFUL!!! God is good! He knows how much we can handle! There sure is alot going on, but it's been enjoyable. Jade and her son Gavin are such a blessing to us. She is a great mom and sooooo helpful around the house. She's also agreeable to homeschooling, so that makes one less hassle.

Sumana is back to her workout routine, though the treadmill seems hard to make progress on. I still haven't worked with her on our Wii, but I guess she's gotten in some time with Jade and/or Andrew. We're hoping to get Sumana in tip-top shape in time for her surgery. Her lungs seem to be in great shape. She had a nasty cold (I mentioned it in an earlier post). It hung on for over 2 weeks! Thankfully, she got over it with lots of albuterol and rest (and lots of prayer, too, I should add!)

Next Sunday is Gretchen's grad party, so I'll be busy making stuff and getting things organized. Greig's parents and niece arrive Friday. It's going to be one fun weekend!

Fantastic 'Mom' Weekend!

2010-05-09T19:31:00.003-04:00

Once again, my friend Cheryl and I had a wonderful getaway to the Pennsylvania Homeschool convention. My longtime friend, Jennie (from The King's College days), was also able to meet up with us for half the time. What an added bonus! We all got along great and ate lots of great Chinese food!

The weather was beautiful in Harrisburg: 80-ish and sunny on Friday and 70 ish and windy on Saturday. What a shock to hit SNOW in Cohocton! It was so cold and miserable; I wanted to turn around and go back (well . . . almost!)

I think I'm pretty well set now for school next year. Now the goal is to finish this year strong. Both Andrew and Sumana will complete a subject or two in the next week, so we can see the end in sight. Other subjects, though, will take us into June. I don't foresee any problems finishing by Sumana's surgery June 18th.

One big change we will be adjusting to is the addition of a 16 year old and her 6 month old son. After our most recent foster care experience, I'm almost embarrassed to tell you that we're doing it again. However, we all want to try it . . . including the mom and her son. I will be homeschooling her and will try to mentor her on how to raise up her son. She is very anxious to get into a family environment, so though there will be adjustments, she WANTS to come and is ASKING for our help.

Please check your calendars for May 23rd. If you are available, we'd LOVE to have you come and help us celebrate Gretchen's belated high school graduation. It will be at LeTourneau Christian camp and run from 3-ish, til 10-ish (weather permitting!) Please RSVP by next Sunday (May 16). (585) 554 5301 or holmans@frontiernet.net

Thanks!

Lots of News!

2010-05-04T15:39:00.002-04:00

Surprise, surprise! Dr. Sanders just added some surgery time June 18th and Sumana's got it! It will mean that she'll have plenty of time to re-coup for camp at the end of July! She is one happy girl! (Her attitude continues to amaze me . . . not 'poor me I have to have surgery' . . . but "YEA! I get to have surgery early enough so I can go to camp!"

Sumana has had a yucky cold for about a week. She was having such a hard time breathing on Sunday that she stayed home from church and had albuterol treatments every 3 hours! I thought for sure we'd be off to the doctor's by now, but she's fighting it with all she's got.

Today is my mom's birthday, so we're all looking forward to having her and my dad over for dinner tonight. Sumana has been busy making a special picture for 'Nanya' (where's the Spanish keyboard when I need it!!!).

Thursday I'm off to Harrisburg, PA with my good friend Cheryl. We've been going for 7 or 8 years for the PA homeschool convention. I don't have nearly the shopping list I usually have, but I'm really looking forward to the time away. 'Mommy time' still is pretty special even though the kids are much older.

TWO summer surgeries!

2010-04-30T12:42:00.002-04:00

It's looking like a July surgery for Sumana and NOW Gretchen in August! My poor big girl has had a lot of ankle trouble over the last year or two. We finally saw an ankle specialist and after 6 weeks of hemming and hawing, she will need ankle surgery. She has a congenital defect in her heels that make her 'the leaning tower of Pisa' and I guess the injury to it compounded the problem.

The doctor is going to break Gretchen's heel bone and take out a piece; hoping to straighten her up. Then she's going to lengthen her Achilles tendon and suck out all the accumulated scar tissue. Nice, huh?? Because of Gretchen's busy summer (graduation party, summer school and working at camp), we're opting for a mid-August surgery. By then, Sumana should be in better shape, too.

The bugaboo at this point is scheduling. Dr. Sanders is already booking up for the summer and his secretary is out til mid week. Dr. Baumhauer only does surgery 1-2 days a week and hasn't finalized her August surgery schedule yet. Lots of hoops to jump before the BIG days.

While Gretchen and I were waiting to see her doctor, a woman in the area was LOUDLY complaining about how she had driven 1 1/2 hours to see the doctor and how things were not going as she planned. I must honestly say that I was quite irritated with her attitude. True, we only drove an hour, but I am soooo thankful that we have such wonderful surgeons/specialists within an hour or hour and a half that we can see. I remember all of our 5+ hour trips to Philadelphia to Shriner's because we felt the need for a continuing second opinion.

I'm so glad those days are gone. We have some of the best doctors in the country right in our backyard! What a HUGE blessing. Though I had to drive to Rochester on Wednesday afternoon with Sumana and then Thursday morning for Gretchen, it really didn't bother me at all. I am just plain thankful we have that option.

Migration in Spring

2010-04-28T20:19:00.003-04:00

We expect and even look forward to the birds migrating back to our yards in Spring. However, migration in a VEPTR rod is definitely not something we want to EVER deal with, no matter the season! Sumana and I just got back from seeing Dr. Sanders (he squeezed us in at the VERY END of his day!) It was obvious to him that the rod closest to Sumana's spine has migrated UP into her upper ribs. On the x-ray it appears to be at least a 1/2 inch change from February's films (maybe more . . . that's MY guess-timate).

So, believe it or not, Dr. Sanders wants to wait a month and see if the area heals and if Sumana can cope with the pain. In the meantime, he wants to schedule surgery for July. If she has too many problems between now and a month, he will do her surgery earlier. As always, the skin on her back incision sites is a real concern. Up until 3 weeks ago, one area was still 'oozing'. Her skin is really struggling to heal with the close succession of surgeries. The longer we can wait the healthier her skin can get.

The real bummer in all of this, though, is that the offending rod is actually the one Dr. Sanders said didn't need replacing yet. There is plenty of room for expansion: maybe 2-3 inches. Because of this rod trouble, she'll need the ENTIRE, full-blown surgery AGAIN-- Both rods needing to be worked on, or replaced. There is so much room left on the rod on the spine-side, I doubt Dr. Sanders will even consider replacing it. You can bet I'll ask, though!

Sumana and I made the best of our late-day appointment. We had a late lunch at our new favorite: Mysore Woodlands. They do REAL South India food. Check out the size of the Masala Dosa in the picture! (That's by far my favorite dish. It is cooked potatoes and spices that are rolled inside a paper-thin crepe-sort-of-thing!) We also 'hit' Lands End Inlet and the mall for a little sale hunting. We were very successful!!

Other good news: Sumana saw a different orthodontist last week and was told she has BEAUTIFUL teeth (that's kinda what I thought!) He said in an 'ideal world' there is work that could be done, but nothing critical or even really necessary. Yeeeee-hawwww! One less thing to deal with!!!! I couldn't be happier (Sumana, too!!!)

Happy Girl

2010-04-25T15:50:00.002-04:00

Sumana has been so much happier this week. I hadn't realized how the stress had been affecting her. After watching 'the little boy' this week, she commented how much she loves taking care of babies . . . 'They're so much fun.' Then she commented about how our last foster care experience was NOT fun!

Thanks to those of you who prayed for the single mom we're trying to help. It sounds like things are not as bad as she first thought. I also re-read my last point and realized that it sounded like I was probably talking about racial prejudice, but I'm actually becoming much more aware of prejudice toward people with mental illness. The girl that was living with us definitely is dealing with some sort of mental issue and so is the mom who is currently in crisis.

Since I have struggled with depression for years, I guess I can understand the overwhelming feelings that overtake some people . . . how they can feel so alone and hopeless. When the mom came to pick up her son, she was a new woman. Just a break to 'get her head together' and to do some things for HERSELF really seemed to energize her. How ironic that I, too, was energized by watching her little boy. It's indescribable, really. My own kids used to wear me out, but now if I help a family in need by watching a young child I'm energized. It's pretty cool when you know you're doing what God wants you to be doing!

Back on the subject of Sumana, she has been having a lot of pain this weekend. I had planned on calling her doctor today, but we seem to have found a balance of pain meds that's working, so I guess I'll wait til tomorrow. She is scheduled to see her doctor on Wednesday, but because she's having more and more pain I at least want to touch bases with him. I'm concerned that the VEPTR has moved or become loose . . . something's going on. I'll let you know more when I do!

Wii Fun . . . FINALLY!!!

2010-04-20T16:36:00.002-04:00

We have been busy doing things that are special for our family since our foster daughter was removed last week. It feels like we're celebrating in one way, but there sure is an ache in my heart that reminds me that it's not ALL happy. I still haven't made contact with K yet, if I don't hear by tomorrow, I'll be more assertive about getting a phone number.

Friday we got take out Chinese for dinner (that's a once a year type of event). Saturday and Sunday we just hung around the house and I got caught up on paperwork and SLEEP! Monday we all went out to Applebee's for dinner. (That's NEVER happened before!) And, today . . . I got Andrew to set up the Wii! It's a beautiful day outside, but Andrew, Sumana and I decided to hang out and play!

Sumana was soooo surprised! She actually showed me and Andrew how to play some of the games. We all tested our BMI and set goals . . . this system is soooo cool!!! Sumana's favorite game is actually a RUNNING game! Andrew is pretty cute doing a hula hoop type game (don't tell him I told you!!!)

Another family is in crisis and our 'number' is up again (already!) I think we would have helped this family even if K were still here. We'll have a 15 month old for a couple of days this week. It's another sad story . . . people can be so prejudice against others that aren't like 'us'. I just want to break into song . . . 'can't we all just get along'?????!!!! Please pray for this single mom who's in a tough situation. She needs wisdom and some good legal advice.

We're also busy starting to plan a belated graduation party for Gretchen. We (I) decided last minute to graduate her early last year and promised we could give her a real party this year. Mark your calendars: Sunday, May 23 at LeTourneau Christian camp. It's going to be a BIG party . . . Gretchen invited EVERYONE on Facebook. (Hopefully we get a better RSVP this time than at her birthday party!!!)

Change is here

2010-04-16T18:36:00.002-04:00

Our foster daughter was moved today to a therapeutic foster home that's over an hour south of us. It'll make it next to impossible to visit her; however this placement is only temporary while she waits for the diagnostic center to open up. I don't have any details . . . the social workers came to the house to pick up her stuff and then got her right from school. 'They' thought it would be better if they handled it and we did not get involved. That was hard, but hopefully we can connect soon.

Thanks for your prayers during this difficult time. Maybe I can get back to blogging about Sumana now!!!

Off to Dr. Sanders again!

2010-04-16T08:53:00.002-04:00

Well, I knew it was too good to be true . . . no Rochester appointments til June??? Sumana's PT, Miss Kristen, and I took a good look at Sumana's back yesterday and did NOT like what we saw! I knew she seemed to be 'leaning' already, but her whole posture seems 'off'. Her right hip just about TOUCHES her right shoulder blade and the incision over her spine is diagonal (it used to be vertical).

Needless to say, I got on the phone IMMEDIATELY to get a message to Dr. Sanders. He does want to see her soon. Though he'll be on vacation next week, we'll get in to see him the week after. I guess it's a good thing to see him soon. His secretary said his surgery schedule for summer is already packed! Yikes!!

Our 'situation' with our foster daughter continues to be a major stress factor. Her case workers are having a hard time finding a place to send her. There is a 3-6 month wait for the diagnostic center they were hoping to get her into and they're already looking in Rochester for a temporary group home that will take her while she waits for a spot to open up. I hate to see her moved that far, but she's proven that she needs a higher level of care than is available in our region. Please keep that situation in prayer. We really need to have her moved . . . and SOON!

Cool Song 'Experience'

2010-04-12T18:14:00.002-04:00

We talked in Sunday School yesterday about those special times where you know God is talking to you. Well, have I got a cool story to share today! As you know, we are extremely stressed at our house with the addition of our 15 year old foster daughter. I thought I had 'licked' the nail-biting habit, but it's back with a vengeance. I've never felt more trapped in my own house. I often feel like I want to crawl out of my skin.

With that as a backdrop, I'm driving to work today listening to music on two different Christian radio stations. I have no patience for talk or commercials, so I'm constantly flipping between the stations. Also, there are certain places on my trip where I only have reception for one station. I was listening to the song 'Love the Lord thy God' (It's Matthew 22:37 set to music). 'Love the Lord thy God with all your heart, with all you soul, with all your mind, with all your strength'. I started to lose the one station so I switched over to the other one and I heard the same song, so I switched back and it was REALLY the same song, just a little re-wound on the 2nd station. I guess God wanted me to get a GOOD listen to the song. I almost cried, it was just a reminder of priorities in the midst of our struggles. How cool is that??!!!

Meanwhile, Sumana is surviving with a stressed-out mom, but a lot is falling through the cracks. She really is not exercising like she needs to and we still have the Wii in the box! She is dying for Indian food, so we may have to make a trip to Rochester next week. We're not 'scheduled' to go to Rochester til mid-June, so that's a ways away. We didn't have time last week between appointments, so a special trip might be warranted! Also, we STILL haven't caught up with our friends Giana and Dana. We'll keep you posted on Sumana's plans!

Update . . . FINALLY!

2010-04-03T09:20:00.003-04:00

When it's quiet on this end, it usually means we're 'crazy busy'. However, this time it's quiet because there's been so much stress I haven't been able to keep up with my usual routine. Since it involves our foster daughter I won't go in to too much detail, but she has been at the center of the stress.

I really wanted to something together as a family for Easter, but with Greig's schedule and area church's schedules, nothing seemed to fit. However, Greig's friend Vaughn called him and invited us to his church in Painted Post. It was a powerful presentation about 'The weekend that changed the world". We ALL went (all 7 of us). It 'would' have been just what I had hoped for, but our new addition made the 1+hour trip down and back just miserable! Of course there has the been the issue with how she treats Andrew and Sumana, but this helped push things to the breaking point.

Even though she was warned almost 2 weeks ago that we were her last chance, she seemed to not care. Now, the bottom line is that she will be moved to a diagnostic residential center. I hate to see it come to that, but maybe if she can get a higher level of care, she can return to us down the road. Please pray for Kathleen. Though we've told her what was coming, she doesn't believe it'll really happen. AND, to make matters worse, she has been a delight the last 2+ days. It's hard to know if she's ready to make a change or if she's just trying to get out of the inevitable.

Meanwhile, Sumana had her annual check up on Thursday. This is the BIG one that involves an ultrasound of her bladder and kidneys and then a 3 hour appointment where she sees upwards of 4-5 practitioners/doctors. Her kidneys have grown again (yea!) and her bladder continues to function well. Both of these areas are usually major concerns for kids with spina bifida. Also, I guess her VEPTR surgery could have negatively affected the function of these organs. (That was one thing I hadn't been warned about!) However, she was not affected at all. Praise God!

The nurse practitioner that has seen her every year for 5 years noticed a HUGE improvement in her appearance/posture and her use of language. She answered all her questions directly and even asked her questions. I also commented that her attention to schoolwork has improved a lot this year. We still need to work on her handwriting. I have the materials, it just takes time and regular practice. She's doing so well in other subjects, I guess it's time to focus on that now.

We also went shopping after the appointments and got Sumana all set for summer clothes! I had never been to the Lands End Inlet before, but what a pleasant surprise! I love their stuff anyway, but when we went to the check out EVERYTHING was half off! I guess there was a special kids sale, but I was happy with the price BEFORE the discount. If we had more time I would have gone back and looked for MORE!!!

We are looking forward to celebrating Easter at Crosswinds tonight and tomorrow at Middlesex Baptist. This is BY FAR my favorite holiday of the year. It has such depth of meaning to me. Jesus is not dead, HE IS RISEN! With all of the stress of the past weeks I am continually reminded that because of His resurrection, He proved He is God and He can do ANYTHING!

Concert and little boys

2010-03-28T16:51:00.002-04:00

Well, Sumana got to go see her big brother, Jeffrey, in concert Wednesday night. His band, A Decent Tuesday, performed at 'Hot Topic' at Eastview Mall. There was a great turnout and Sumana actually enjoyed the concert. I don't know if she's getting used to the loud volume, or if the venue was a little easier on the ears . . .??? Before the concert we went to Tom Wahl's. For you out-of-towners, TW is a western NY hamburger chain. Huge burgers, homemade rootbeer . . . yummy, yumminess! Sumana ate an entire WAHL burger . . . complete with ham, cheese and all the fixin's! Who knew she could eat so much???!!!!

Friday night we had a 22 month old boy stay with us for a short respite for his guardians. We hadn't seen him in over 9 months, so he didn't remember us or our home. Sumana and the other kids seemed to break thru to him, though. He really warmed up to us and seemed to have a good time. On Saturday another little boy came (15 months old), so we had two little boys for the morning. Thankfully, the older boy left before lunchtime, so we only had one little guy for the rest of the day. Sumana LOVES little people. She was so good with them . . . she got right down at their level and played along with them. How cute!!

Today I led Children's Church. Check out this truly 'God thing': The theme of today's lesson was showing Jesus' love by helping others who are different than us. It was all about helping people with disabilities. We brought out Sumana's wheelchair and walker and talked about why people might need them. Some kids had older relatives who needed them, so they could relate on another level. Everyone had seen Sumana before, so they were comfortable talking to her about ways they could help her. I also taught them 'Jesus Loves Me' in sign language and talked about people who can't hear. It was a WONDERFUL experience and I think the kids really 'got it'. How cool that the ONE Sunday I sign up to help, it's a topic that our family is pretty passionate about. Yea!

Beautiful post and update

2010-03-21T08:24:00.004-04:00

OK, you haven't heard from me in a while . . . of course that means I've been busy. Yesterday I actually was home all day and got through my ENTIRE 'to do' list (updating the blog wasn't on the list!!!) So, today I'm feeling a bit more prepared for the week ahead.

We had our difficulties last week, though. I guess this isn't MY difficulty, but we were sad to hear my Grandma Vera fell and broke her hip. We visited her once last week and she's doing pretty well . .. but in a LOT of pain. Please pray for her recovery. MY difficulty last week was dealing with Kathleen and her schoolwork. She is getting failing grades in some of her subjects and it's not for lack of 'smarts' . . . she's just not doing the work. AND, she's said some really horrible things to Andrew, too. It breaks my heart. One of my favorite benefits of homeschooling is the limited chance our kids have to be called names and picked on. I STILL remember the hurts from junior high name calling.

Well, then I read my cousin's post today. It is soooo beautiful. I HAVE to share it. We all have scars from hurts others have caused or poor decisions we have made. Megan's words and the associated link say it perfectly. Please read it and then listen to the song. You will be blessed!

http://www.stepsforbrady.blogspot.com It's the Saturday, March 20th entry, called Redemption.

Thank you for praying!

2010-03-15T18:17:00.011-04:00

Gretchen (17, Andrew (14) and Anna (20)

Zach (16), Jeffrey (19), Andrew (14) and Phil (ahem . . .)

Emily (12) and Kathleen (15) cutting veggies.

Noah (7?), Leah (almost 9) and Sumana (11)

Our amazing, budding mechanic: Jeffrey!!!

Thanks for praying for our 'adventure' to Tatamy, PA. We had a WONDERFUL time! ALL of us . . . .REALLY!!! The kids played board games, Wii, spoons and even 'Mennonite Madness!!!" What a riot! Check out the fun pics of Sumana and her good friend Leah. They were soooo cute! They both had been counting down the days til they could be together. Sumana stayed in Leah's room. At night they talked and even prayed together til they fell asleep. They were up and playing games by 7 am. Monopoly and Horse-opoly seemed to get the most attention.

The older kids played games like 'Faces', identifying old-time photographs with phrases that pinpoint the facial expressions. They also played spoons (dangerous!) and a new game for us, 'Mennonite Madness'. They had to write the numbers 1-100, but there was only ONE pencil and a roll of '6' on a die earned the right to use the pencil . . . that was pretty rough, too! Sunday morning we all went to church and in the evening all the teens went to a Cuba Gooding movie at the church, "Gifted Hands'.

The only bug-a-b00 in the weekend was the effects of the rain. I checked the info when we got home . . . we got almost 3 inches of rain and wind speeds were recorded at over 60 mph! Well, our big, green van was out in the weather. I totally forgot that it doesn't like to start when it gets wet . . . and it got REALLY wet. When it wouldn't start for church on Sunday, we got it into the garage to dry out. Today, Jeffrey tore the audio console off the van to get to the spark plugs. Who in the world designed it THAT way??? Thankfully, Jeffrey is pretty handy that way, so he was able to disconnect the spark plugs and dry things out with a hair dryer. Once he got the van running, we put things into overdrive to pack it up and get on the road. We made it home in 4 hours, with no incidents. I am truly thankful!

AND, I must report that our new daughter handled herself quite well. There were several intense moments, but all in all, she held her tongue and temper very well. She even announced when we got home that she had lots of fun on our weekend! A BIG thank you goes to the Tielmann family for bravely welcoming the six of us into their home of 9, already! The other sad note, though, is that Greig had a really rough weekend at Crosswinds and he ended up not coming down.

We're off (almost!)

2010-03-11T22:00:00.002-05:00

Well, we take off at 5pm tomorrow for our weekend in Pennsylvania. We're all really looking forward to seeing our friends . . . too bad it's supposed to be rainy!

Today Sumana got caught up with a lot of her schoolwork (as you can imagine, it's been a rough week!). She also had PT and got to hang out at the library for a bit. She just LOVES the library . . . it's pretty cute to see her sitting in a chair reading, or looking for a new book on the shelves OR (get this!) using a computer to find a book she wants. I often forget that she IS 11 years old. She really is becoming pretty self-sufficient. (YEA!!!)

We would appreciate your prayers as we are on our trip: Kathleen has been a handful (or should I say 'mouthful'???) We want to make her part of the family and hope she'll enjoy the time hanging out for the weekend, but she REALLY needs to watch her mouth so we can ALL enjoy the time. I'm realizing how I've slacked off with the constant, intense praying that I've enjoyed in the past. It's that same old, "if things are going good, I don't seem to need God as much" BUT, "if things are bad, I'm on my knees all the time!!" It's amazing how many times I've repeated this pattern . . . when will I ever 'get it' that I need Jesus ALL the time!!!???? Well, thanks for hanging in there with us!!!

Happy Tuesday!

2010-03-09T20:30:00.002-05:00

Boy, am I having a hard time getting on the computer! We have been soooo busy! Things are going well, though.

Many people have asked about how Gretchen's first date went. She and Nate had so much fun. They had dinner at Ponderosa and then came home to hang out. Nate gets high marks from me 'cause he could quote Napolean Dynamite like nobody's business. We just laughed and laughed!

Meanwhile, poor Sumana has had to share Mom big time with Kathleen. I can't get over how many times I've had to go to the school for 'this' or 'that' and then getting her caught up with appointments. UGH! I have not been nearly as faithful as usual getting Sumana on the treadmill. Thankfully, we're keeping up with all the exercises. She is sooo excited about going to Tielmanns this weekend. "I can't wait to play with Leah and her little brothers!"

I've made it through five of my 8 day work 'week'. I'm working more this week because another clerk is on vacation this week and I'm taking NEXT week off.

Dr. Sanders video clip

2010-03-06T18:01:00.002-05:00

I finally had a minute to look up Dr. Sanders' team's video. Here's a link: http://www.youtube.com/watch?v=Pjy46qSxQml If it doesn't work, the video is called: URMC Medical Team Helps in Haiti. I found it by just searching on Youtube.

Wow, March is here!

2010-03-05T20:23:00.002-05:00

I can't believe it's March 5 and I haven't posted yet this month! As you might expect, it's been a VERY busy week with appointments and my work schedule. Last night (Thursday) I began an eight day stretch of work that goes through til next Friday (except Sunday, of course). In addition, we have Sumana's two sessions of PT, court for Kathleen and a foster parent support group meeting (which I REALLY need!!!)

Sigh . . . . I'm already looking forward to NEXT weekend. We're ALL travelling to Tatamy, PA for a long weekend with our college friends, the Tielmanns (and their seven kids). It'll be nice to relax and catch up on each other's lives. Kathleen will go with us, too . . . Greig is actually coming later in the weekend.

The kids are still in the dark about this, but it is now official! We own the Wii console and Wii Fit Plus and balance board!!! I'm not sure when we will 'unveil' it all, probably after our weekend with the Tielmanns. The older kids are 'off' for Spring break and since we're not heading South to visit my parents, it'll provide something new and different for us all.

Last week I mentioned deciding to go ahead with braces for Sumana's teeth. Well, SCRATCH THAT! (to the tune of 5,000 scratches!!!) Her braces cost more than Andrew AND Gretchen's braces PLUS another $800!!!! Insane! Her monthly brace payments are the amount I would expect to pay for a CAR!!! (Can you hear my sarcasm and disbelief???!!!!!) I'm getting a second opinion for Sumana and an initial evaluation for Kathleen with an orthodontist in Penn Yan. Unless the cost is a whole lot different, our girl will NOT be getting braces.

Well, I must sign off quickly, I am a very excited and nervous parent this evening. Our girl, Gretchen, went on her very first date tonight with a very nice young man she met in her Music classes at FLCC. Nate even called earlier this week to talk to Greig and get his permission to take her out to dinner. Yikes!! I knew this day was coming . . . . but it's here NOW!!!!

Lovin' the Snow!

2010-02-28T13:26:00.007-05:00

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!

2010-02-25T19:29:00.003-05:00

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!

2010-02-23T18:20:00.003-05:00

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!

2010-02-22T17:37:00.002-05:00

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!

2010-02-18T08:10:00.004-05:00

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 . . .

2010-02-17T09:00:00.002-05:00

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!

2010-02-16T10:27:00.002-05:00

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!

2010-02-13T17:58:00.005-05:00

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

2010-02-11T19:13:00.006-05:00

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)

2010-02-11T08:33:00.011-05:00

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!

2010-02-10T20:31:00.003-05:00

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!

2010-02-10T07:38:00.002-05:00

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!

2010-02-09T15:22:00.002-05:00

"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

2010-02-08T08:05:00.002-05:00

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

2010-02-07T17:23:00.003-05:00

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!

2010-02-06T16:56:00.004-05:00

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.