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!!!

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.

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.

Love,
Sumana

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!

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!

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.

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!

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.