Wednesday, April 29, 2009

More 'In Her Own Words'

Note from Mom: Sumana and I visited a couple of MRI internet sites to help her prepare for Saturday's MRI.

The MRI machine is going to take me into the tunnel that is shaped like a middle of a donut. It will take 20 pictures at a time. When the machine makes noise it tells me to hold still, 'cause it's taking pictures. I heard that I might be able to listen to music while I'm in the machine. I hope they have Christian music. They're going to see if my spine cord is wrapped around my spine. If it isn't, they might be able to do the VEPTR surgery.

This week I played Tic Tac Toe at therapy. I had to throw beanbags at the squares while I was on 'all fours'. We also got our 11 month-old baby friend this week. I like to play with him, especially when he's not crying.

Final note from Mom: Sumana is working really hard on her school work. She is up to date and should still finish in 4 more weeks. Yay, Sumana!!!

Monday, April 27, 2009

Saturday MRI ???!!!!

Well, I can't believe it. Sumana has her MRI scheduled and it's on Saturday, May 2nd. Who knew?? Saturday MRI's?? I've been watching my calendar, wondering what has to get cancelled. The first casualty is going to be our little respite guy. He's 11 months old and visits us one weekend each month. He can still come; he just has to go home a day early. I still have a homeschool conference, a niece's graduation and a trip to New Orleans on the chopping block. Sumana's surgery is going to take precedence over it all. The sooner, the better.

Please pray that Dr. Silberstein can see what he needs to see in the MRI (and that Sumana will lay still!!). That would be the best case scenario. Then Dr. Sanders would be cleared to do the VEPTR surgery. Otherwise, Dr. Silberstein (the neurosurgeon) will need to be in on the front end of the VEPTR surgery to correct any spinal cord-related issues.

Sumana continues to be optimistic. Her little friend Giana made it home and is waiting for overall good health to try the VEPTR again. Sumana is looking forward to what the VEPTR will mean for both of them. If you scroll down, I have a post about the device and what it does.

Friday, April 24, 2009

In her own words . . .

Sumana is going to take her turn at blogging today. Mom is just taking dictation . . . .

I have two dogs and 3 older siblings. Two of them are boys and one is a girl. Their names are Gretchen, Jeffrey and Andrew. They are 16, 18 and 13. I have 2 sets of grandparents. One is on my mom's side and one is on my dad's side. I have 4 younger cousins on my mom's side and 3 older cousins on my dad's side.

Miss Kristen is my PT. She stretches me; we do games. Today we did Connect Four. It's a game that the person has to connect four checkers in a row to win. If the other person gets the spot that you want; just get another spot.

I wanted to write to you so you can pray the x-rays will show the doctor what he needs to know. Dr. Silberstein and Dr. Sanders and Dr. Rubery are my doctors. They are going to put a metal rod in my back that's going to make me grow taller. I'm going to be in the hospital for 5 days. And it's a six week recovery (that means that I have to recover for six weeks).

I like writing to you. I will do it again soon.


P.S. from Mom: I worked really hard to not edit Sumana's ideas. I love the way she thinks! Hope you got a smile reading this!

Thursday, April 23, 2009

No news yet.

We're still waiting for insurance approval before the MRI can be scheduled. So, more waiting. (Did I mention I'm not good at waiting??!!)

We did get our standardized testing done for the older kids today. That's a relief. One less thing for me to think about. I also planned out the next 6 weeks for all the kids so they know what needs to be done in order to finish school for the year. This will certainly help me to know if they're on track or headed for summer school!!!

I guess the biggest prayer need at this point is that God's perfect timing will be accomplished and that I would be faithful with the time we have til surgery. Sumana has lots of exercises to do and a ton of schoolwork to finish. So, please pray that she would stay focused. Thanks!

Tuesday, April 21, 2009

More Tests Ahead.

Well, today was a VERY long, tiring day. Up at 6ish and not home til 5ish. UGH! Sumana had her CT scan and saw Dr. Silberstein (the neurosurgeon). However, now the future is much more uncertain. Dr. Silberstein couldn't see what he needed to see on the CT scan, so we're going to get an MRI as soon as they can schedule it. From what he can see, her spinal cord is split, but I don't think he's sure of the cause. If I understand correctly, there is a piece of bone growing in between the cord. That could be the cause of the split, or the bone could have grown up AFTER the split. If the MRI is still inconclusive, he would have to do an exploratory surgery to get an answer.

Also, since we don't have any pictures of her back from India, there's a lot of guesswork regarding how her spine opening was closed up and what type of spina bifida she actually has. (She has been labeled with at least 2 different types, I won't try to spell them here . . . for your sake and mine!) I think the bottom line is, she needs to have a free and clear spinal cord before Dr. Sanders attempts to straighten her back. (I mentioned in an earlier post that her cord might also be tethered; hung up on itself). As we were leaving, Dr. Silberstein mentioned that he might be able to do his part of the surgery first, with Dr. Sanders following him. This would save Sumana from being opened up more than once.

On a much lighter note, we got to meet Giana and her mom today in the PICU at Strong. (I'm learning all kinds of new words! Pediatric Intensive Care Unit). Here's a picture:
She's such a happy little baby. She's had so many challenges in her 9 months, but she has the best mom! Dana showed us all around the PICU, a family center/outdoor play deck and the Ronald McDonald House. She shared some of their story and what it's like to live in a hospital setting longterm. (She certainly has made the most of it; I wouldn't want to do it!) Dana is hoping that Giana will get over her infection soon and be able to get her VEPTR this summer. Sumana and I feel much better after seeing the PICU and its machines and hearing about the great staff there. She'll be in good hands.

Monday, April 20, 2009

Getting Stronger!

Well, Miss Kristen (Sumana's PT), has a great plan. From now til surgery, Sumana is going to work more and more on strengthening exercises. She already has made tons of progress, but now Sumana understands the importance of being strong before surgery. We're hopeful that all she does NOW will ultimately help her AFTER surgery. It certainly can't hurt!

Tomorrow morning, Sumana has her CT scan and neurosurgeon appointment. If all looks good, we should be able to schedule her VEPTR surgery. For those of you who are new to the blog, please scroll down to see a picture of the device.

After her CT scan, we're going to go visit Giana and her mom in the PICU. She's the 9 month old who's recovering after having her VEPTR removed. I'm looking forward to meeting someone who's a little further down the road than I am. I hope I can encourage her, too!

Friday, April 17, 2009

Fun in the Sun, Part II

Today was another wonderful day for the Holmans. We learned so much about wildflowers yesterday, that we took to our own hill this morning. We found a totally different group of wildflowers (and not as many as Sugarbush!). After all, we have an 'eastern aspect' while they have a 'western aspect'. (I told you we learned a lot yesterday!!) Sumana walked the whole way, even up our steepest incline to our pond. Way to go, girl!

Already we have met many families dealing with similar issues. Giana is not yet 9 months old and she's already had her first VEPTR surgery (and then had it removed!) Roudrabh is only a year and a half old and he is facing a possible VEPTR surgery. Giana's family is local and I hope to meet them at some point. Roudrabh's family is from India originally and they have some tough decisions ahead. This surgery is not available in India and their extended family is back in India (and her husband is here on a work visa). It reminds me, no matter how frustrated I get about politics, we are a very blessed nation. We have so much; and we often don't realize it. Please keep these dear families in prayer, too.

Thursday, April 16, 2009

Fun in the Sun!

We spent most of the day in the wonderful outdoors. I keep wondering how many more field trips we can enjoy before Sumana's surgery sequesters us indoors. So, I'm actively looking for outdoor trips we can enjoy.

Today, Chuck Winship and Pam Masterson of Sugarbush Hollow gave us an incredible tour of a tiny portion of their maple syrup farm. We learned about microclimates, viewed many early wildflowers, listened to a busy piliated woodpecker and of course saw the taps, tubes, filters, cookers and bottling stations. They farm 2500 sugar maples trees. FYI: sugar maples are ONLY found in northeastern North America. We have quite a 'corner on the market' for this first harvest of the season. It takes 40 gallons of sap to make 1 gallon of syrup. Sugarbush Hollow made 900 gallons of syrup this year. (The kids were doing lots of math!)

Well, I highly recommend visiting them outside of Wayland, NY. Sumana was quite the trooper hiking up and down the hilly forest. She also had her first 'fireman' carry. It worked pretty well to keep us with the group. Of course, we also had to bring home some REAL maple syrup for our pancake dinner tonight. Yum!

Wednesday, April 15, 2009

A Day on the Phone.

Andrew got his braces off today (yea!!), but that required a late morning appt, followed by a late afternoon appt. I was very thankful for my cell phone today! I was able to connect with the orthopedic doctor's office and the neurosurgeon's office several times to coordinate appointments for Sumana next week.

Here's what we ended up with: an 8:30am CAT scan on Tuesday, followed by a 9:30 am appt with the neurosurgeon. I'm soooo glad that Dr. Silberstein will be able to evaluate Sumana inside and out at the same appt. Whew! Since Dr. Sanders will be in the Dominican Republic, I'm afraid we won't be able to schedule the surgery until he gets back and can consult with Dr. Silberstein. But, at least things are moving forward pretty quickly.

The kids and I visited my Aunt Ruth today (she's 95 years young!) and Sumana was quite the hit with all the older ladies at 'craft time'. They all fussed over her and helped her make an Easter bonnet. It's always fun to see how a child perks up group of elderly people. Sumana is anxious to go back!

Tuesday, April 14, 2009

Another step toward surgery

Well, Dr. Sanders wants Sumana to see her neurosurgeon before we schedule her VEPTR surgery. Thankfully, she will get in to see him (the neuro.) next Tuesday. The down side is that nothing will happen for another week after that because Dr. Sanders will be in the Dominican Republic doing spine surgeries on less fortunate kids. (What a gift for them!)

Dr. Silberstein (the neurosurgeon) will check to see if there is any tethering of Sumana's spine that needs to be corrected before the VEPTR surgery. I'm not sure I can explain it very well, but it's a common problem for kids with spina bifida. The spinal cord gets hung up on itself and causes pain or paralysis as the child grows. I'm hopeful that since she has no symptoms, she doesn't have this issue. I feel good, though, to find out for sure ahead of time, not having the surprise of finding it while Dr. Sanders is doing the surgery.

Monday, April 13, 2009

No date yet . . . UGH!

Well, I called Dr. Sanders office several times today (I hate to be a pain!). The secretary was unable to connect with the 2nd surgeon that needs to be present for the surgery. Hopefully tomorrow she'll get a few dates that she can match with Dr. Sanders' schedule.

I've never been good at waiting, so it looks like I'm getting more practice! In the meantime Sumana is continuing Physical Therapy at the Happiness House twice a week and I have her trying to work ahead in her homeschooling so that she'll be done by the time of her surgery. She also will need a CAT scan of her spine before surgery and I'm not sure if her neurosurgeon will want an updated MRI. I'm sure we'll cross that bridge once we have a surgery date.

We've had an overwhelming reaction to this blog . . . thanks to all who have decided to make Sumana's Faith one of your favorites, we really need your prayers and encouragement. As you can imagine, Sumana is VERY proud of her blog and tells EVERYONE how they can find it. It is really precious to see her faith in her doctors and ultimately in God; she is very much at peace about having surgery.

Sunday, April 12, 2009

Here's a picture of the device and its placement. Kinda scary, huh?

More Info!

Happy Easter! Jesus makes all the difference in our lives. What a wonderful time of celebration we had a Crosswinds last night and at MBC this morning. He is risen!

I've been swamped with questions, so because it's Easter, I'm copying an e-mail I sent recently. It'll give you some background and maybe answer some initial questions. I should have more to add tomorrow! Thanks for all your prayers and support already!!

Sumana saw her regular orthopedic dr (Dr. Rubery) on Wed. in Rochester. He also brought in a new dr that has recently come on staff. (Dr. Sanders is from Shriners Erie). They reviewed her latest x-rays and history. As most of you know, Sumana was born with spina bifida. She also came into the world with some malformed and extra ribs. Because of this, she also has scoliosis. We have had drs. in Philly and Roch. following her scoliosis since she arrived almost 5 years ago.

Over the last 3 years she has had pneumonia several times each year. It has recently been determined that this is probably due to the spine encroaching on her lung space. Pulmonary specialists confirmed that she does have Restrictive Lung Disease.

With that said, Drs. Rubery and Sanders recommend that Sumana have surgery to implant the VEPTR device. It's like 2 vertical ribs. It is made of titanium alloy (oooo!) and is attached to existing ribs and the spine. It is expandable and will be adjusted 2-3 times a year as she grows. The VEPTR will expand her lung capacity and straighten her curve as she grows. The hope is that when she's done growing she won't need the traditional spinal fusions.

The 'God-thing' in all of this is that Dr. Sanders just arrived in the past year and he does the VEPTR surgery. No one else in Rochester does. And he trained with the inventor of the instrument.

We're hoping to get a surgery date on Monday. Because of Sumana's condition, another surgeon needs to be in on the surgery. Please pray that they can come up with a date that BOTH of them are available that is SOON! I really would like to get this underway so we can all have a chance to enjoy the summer months.

The surgery will take 4 hours and she'll be hospitalize 5 days. The recovery time is a full 6 weeks. I am fearful of the pain involved for Sumana. She has been so blessed with relatively good health and a pain-free life thus far. From what I've read, the adjustment to the device is very difficult. Once that hurdle is cleared the kids seem to do extremely well.

Thank you for your prayers. I'll keep you posted!

Addition on 4/12/09: Someone reminded me of II Timothy 1:7: God doesn't give us the spirit of fear. So, if God doesn't give it, who does?? . . . . . And why would we want to take any gifts from him??? Hmmmm, something to think about!!

Saturday, April 11, 2009

Welcome to Sumana's Faith!

I'm really new to all this 'blog stuff', but I've seen how valuable a tool it can be. My cousins have recently had medical challenges with one of their sons and their blog helps keep their friends and family updated through the ups and the downs.

Well, our family has a new challenge. Our daughter, Sumana Faith is facing major back surgery. She was born in India in 1998 with spina bifida. Since joining our family in June 2004, she has learned to speak English and WALK! She is a pretty normal 3rd grader, with a smile that could slay a giant! Her scoliosis has progressed to 51 degrees and now appears to be affecting her lung capacity.

Her orthopedic doctors recommend a device called a VEPTR. It is like 2 vertical ribs that can be adjusted as she grows. The VEPTR will expand her chest cavity and straighten her curvy back. I will add more later. Thanks for joining us on this journey. We need your prayers for wisdom and peace as we travel this road.