Daughter of Purpose (DOP) is going in for a follow-up MRI tomorrow…which is 9 months after her brain tumor was removed. We are praying for the residual amounts to be all gone again. Please pray with us!

In preparing for the experience, I was reminded that I had meant to write a post about DOP going to Shriner’s Hospital for a Gait Study several weeks ago.

For those of you that do not know, DOP had Polio as an infant while she lived in an orphanage in Russia prior to our adopting her in 2008. The effects of the polio have rendered her legs to be weak, which is why she wears braces on both ankles and walks with a funny limp. This is unrelated to the brain tumor found earlier this year.

As a result of her weak legs, DOP has been a patient at Shriner’s Hospital for many years meeting with an orthopedist, a polio specialist and various other doctors and specialists who custom make her braces. She is sometimes a “patient study” because it is very rare that American doctors get to work with a child who had polio. We are always impressed with their care and organization and willingness to try pretty much anything…even when it’s slightly unorthodox. They truly care more about helping the patient than they do about insurance, cost, standardized processes or public appearance.

So none of this may seem very exciting to you. I get that…but here is some stuff that is just simply cool.

The doctor’s requested DOP do another Gait Study. Essentially, it is a study of her gait, her walking, her movements, limps, pressure she puts on each foot and legs, the way she leans and, to some degree, the way she falls….which is kind of a lot. She has done this study before, a few years ago, but this time I got lots of pictures and video and was able to learn a lot more about the technology and process.

Here is how the process works….

DOP puts on a tight swimsuit-like top and shorts. This by far is the most awkward for DOP since she doesn’t like bikinis and she feels like she is wearing one in front of people. I tried explaining the differences between what she was wearing and a real bikini, but it didn’t seem to help. Whatever, girl….

Only the back right shoulder blade has a marker and there is a single one on the center chest. This tells the computer which is her front and which is her back since they are not symmetrical.

The technicians stick onto her body several dozen reflective markers that are silver-like balls. Placed on her shoulders, legs, knees, chest, hips, and feet, they are used to map out different portions of her body. There are 12 infrared cameras placed around the room that shine an invisible light that makes the reflective balls glow back on the cameras. A computer registers the exact location of each marker and records it in real-time. In the computer, the technician draws a line between each marker which then shows a stick-figure of the person. As DOP walks around the room, the cameras and computer produce an image that walks around the computer screen, showing and recording every angle, bend, fall, and detail of her movements. Since the image is just a stick figure, in order to keep the front of her body separate from the back, she has a single ball marker her right rear shoulder blade. Since this ball does not have one on the symmetrical side, they always know this is her backside.

The reflective markers are placed in very specific locations and adjusted to the millimeter so they match on each side of the body.

DOP was tested with this three times. First she did it with no shoes or braces, just her normal non-supported walk. Then she did two more, both with two different types of braces and shoes. The outcome is not necessarily related to either of these types of braces, but it is all we had on hand at the moment.

Without special lighting or a flash, they are plain grey in color.

Reflective Marker lit up with a flash of the camera. They glow!

Waiting to start her first walking set with no shoes or braces.

With a flash from the camera, the balls glow! They’re much brighter in real life…it’s pretty impressive actually.

All the reflective markers are placed at joints and other major locations…even on the shoes.

It is called 3D Motion and the process is frequently used in Hollywood for computer animation as well as video games. The application for the medical field is amazing. The techs record her walking around the room with both this 3D Motion system as well as regular video. The doctors can then later watch the detail of each step over and over again, zooming in or out to get better perspective. They can flip the image around and watch from the front, the side, the back or at any angle. In addition, they can merge the actual video footage with the 3D Motion footage and get a wire-frame over the top of her actual body, slow the speed down and analyze every single aspect of her gait. It’s quite amazing!

Click here for a video of the 3D Motion.

Click here for a video of her Walking with Brace and the reflective markers glowing.

Next, they tested her foot pressure. Using a pedobarograph (that’s a big medical word), they test to see how much pressure she is using on each foot while she walks. It gauges the exact movement and pressure applied to each square millimeter as she places her heal down, then the arch, then her toes…all in real-time as she walks. There is a set of silver metal plates in the floor that gauge all this as she just walks normally across it. Again, it is recorded by video so the doctors can see exactly how the movement flows…or doesn’t flow in DOP’s case.

Click here for a video of the Pedobarograph.

All of this is done so that the doctors can better analyze her gait and determine what the next best course of action is. Since all of the doctors agree that surgery is not the best thing for DOP, most likely these tests will simply provide the direction for which kind of bracing will best suit her needs and possibly strengthen her muscles a bit more in the future.

We go back in December to learn of the results and what the doctors suggest we do for bracing. In the meantime, please pray for her continued recovery from the brain tumor.

Nathan and Brandy

Update on DOP for July 18, 2014

Well….it has been six months since DOP’s brain tumor surgery and five months since I have last posted about her. So many people prayed for her and for our family and we still frequently run in to old friends who ask how she is doing, so we figured it was time to update everyone.

Physical Therapy

DOP (Daughter of Purpose for those of you with short memories) is no longer doing any kind of physical or occupational therapy. She finished them a couple months ago and according to the doctors and physical therapists, she is within 95% to 100% of where she was before the surgery. We think she is also, except for the fact that she still walks slower and is a little more unstable than she was prior to surgery. But she will continue to get stronger just by living life and should eventually gain more stability.

On a side note, her doctors at Shriner’s hospital have changed her leg braces recently and that seems to help. In September, she is going back to Shriner’s again for a Gate Study…a real-time digital recreation of her actual and true gate…it’s the coolest technology ever! I’ll be sure to take and post lots of pictures.

Picking out new braces styles.

Vision

A vast majority of the time, DOP no longer sees double-vision. If she is tired or straining to look in an odd direction, she gets double-vision…but don’t we all??

For the most part, her vision has cleared up substantially and this doesn’t ever seem to bother her anymore.

Kayaking with brother at Adaptive Sports.

Bowling with Adaptive Sports.

MRI

Three months ago, DOP had an MRI done and the doctor just said that it was “stable.”

Stable?!

What exactly does that mean? Well, it means nothing changed from the scan that was done right before she left the hospital three months prior. No change is okay…since it means the 1% of the residual tumor is not growing. As long as it doesn’t grow….we’ll leave it right there and not touch it.

“Hi, this is my daughter. She has 1% of a 3” tumor stuck in the middle of her brain.” It’s just weird.

Jump three months later…

We took her in for a six-month follow-up MRI today and had great results after a bit of a struggle to get into the MRI…

DOP does awesome in the MRI! She has never complained about the loud noises, cold room or claustrophobic environment. It’s pretty dang awesome for a 10 year old to lay still for 45 minutes, not moving with nothing to look at.

But that needle before the MRI………….

To do the particular MRI that she needs, they scan the brain using a chemical called contrast that helps the tumors and other parts “light up” in the scan. To put in the contrast, the nurses have to put in an IV needle. This, is where the awesomeness breaks down.

It. Freaks. Her. Out.

I’m not sure where this came from…perhaps it is because most of the eight IV lines she had while in the hospital were put in while she was asleep. She never had to endure really feeling them being put in. To make matters worse, she has thick skin (in a variety of ways!) and several nurses during all our experiences have had trouble getting the needles just right with DOP.

Three months ago, at the MRI, the nurse had to stick her three times. Today….six. The MRI technician tried one time and failed. She got another nurse who tried two more times in different locations. Fail. Fail. She got a third nurse who tried another location. Fail. In came an anesthesiologist. Seeing that DOP was not doing well emotionally by this point, she gave us a few options, but those all involved coming back another day. So I asked for her to try it herself. Fail.

Then…finally, she stuck it. Whoo!

DOP was happy again. Off to lay still in the cold dark MRI room…

I must give a world of thanks to our long-time friend Becca who works at the hospital and came up from the Child-Life Department and sat with DOP during the entire episode. She was a great help and comfort to DOP. You’re awesome!

After the MRI, we sat with the surgeon to get the results. This is what it looked like.

The right side is three months ago. The left side is today. Amazing!

The photo on the right is three months ago. The photo on the left is today.

Inside the red circle on the right is two white spots on either side of the black ventricle. That is the residual tumor the surgeon left inside. The reason was because if she kept scraping that area, it would have done permanent damage.

The left circle has no white spots! Yeah!

The doctor was clear to say that this doesn’t necessarily mean the tumor is completely gone. There is the chance some is still there, hiding and maybe not picked up by this scan. As was always planned, DOP will still get a full MRI every 3 months for at least a year more.

However, this is looking REALLY GOOD!!

We are very excited and Praising The Lord!

MRI done, let’s eat and praise the Lord!

Thank you everybody for your prayers and continued support for Daughter of Purpose. We’ll be sure to update you again if anything changes.

Blessings to all of you who have cared so much for our family.

Nathan and Brandy

Update on Daughter of Purpose for February 18, 2014

Daughter of Purpose and I stayed in the hospital for 30 days. Yep…a whole month for a brain surgery and initial recovery.

In some respects it felt like forever.

Time frequently stood still as Brandy and I grappled with understanding the medical situation of our daughter. Nurses and doctors came in continuously. They used big words. Just when we thought we understood what was going on, there would be a nurse shift change and new doctors and nurses would come in. They would use different big words. Medicines changed constantly. Then they would stop the meds. On some occasions, time would just stop and stand still. Days turned into more days and those turned into more days. I started losing track of what day it was in the hospital because every day seemed the same. It was like walking next to a train track while a high speed train roars by. You might be moving forward, but it pales in comparison to the train. You can try and see what is happening on the train, but it is completely useless. It just moves too fast.

In other respects, time just flew by.

Although I lost all sense of time while we were in the hospital, as I look back, it was just….done. On several occasions Monday jumped to Friday. 3am skipped to noon. I wondered where the time went and if I missed something. The doctor said the next MRI would be in two days…and then in twenty minutes we were pushing DOP down the hall for the MRI. To use the same analogy, if you’re standing on the high speed train and are trying to look out the window at the passing scenery you can see off into the distance, but you can’t possibly tell what is close by. It’s all just a blur.

I learned there is no real time in hospitals. The doctors don’t follow any logical time pattern. Friends and family never show up when they say they’re going to. The time difference between when you fall asleep and are awoken by the nurse to check DOP’s blood pressure is about 32 seconds. The cafeteria, which is “just down the hall and around the corner” takes 8 minutes and 37 seconds to walk to. A 4 hour brain surgery actually takes 6 hours and 10 minutes. And a 45 minute MRI lasts 30 days….

Brandy says I should be used to it all because my previous traveling days seemed to run about the same way. Perhaps. But the difference is…my daughter’s life was at stake.

And I would do it again….

DOP has been home for just over a week now. She is doing really, really well. When we run into friends or see our neighbors, everyone asks how she is doing. We definitely have felt the love from everyone. So I figured I would give a post-hospital update for all those who wanted to know.

The incision point is healing very nicely. By the time her hair grows back, only about an inch will be below the hairline. If she keeps her hair at a decent length, nobody will even be able to notice.

DOP came home with a walker, a wheel chair and a shower seat. She only uses the wheel chair when we need to walk long distances, like in a store or to an appointment in the hospital. She also uses it in high-traffic areas, like at church. Yes, she has been to church twice since being home…her friends missed her lots!

Having fun baking with mom. Definitely, her wild personality is still there!

She can walk around the house on her own now, although she is still very slow. The last few days she has put the walker aside and just used counters or walls for stability. She can walk up and down the stairs also! Woot! No more carrying her!

For her daily therapy, she works on her arms with a pull strap and plays with a hard putty to work her fingers. She still uses the walker for her exercises and is capable of getting all the way to the mailbox and back….that’s about 600 feet total. She has built up a bit more confidence, although it still wanes after a while. She will have PT and OT therapy for 6 to 12 weeks at least. But she is doing well.

Occupational Therapy.

Her eyes are still seeing double. She says they’re getting better, but we’re not really sure. She wears a patch during the day and switches it back and forth. We have a follow up appointment with the surgeon next week and we’re hopeful she can talk to us more about this. Please keep praying for her eyes to get better.

The talking is back…yep {sarcasm}. Sigh. I failed to enjoy the silence while we had it……

Thank you everyone for your continued prayers and support for DOP and our family. You all are the best!

A sock fell. She had to figure out how to get it herself.

Here is some other interesting data and facts about the hospital stay. Well, I think it’s interesting.

All of this took place during the 30 days in the hospital…

A PICU doctor once prescribed the wrong medicine. It was really early in the morning and even in my sleepy state I could recognize that something in the medicine’s name didn’t seem correct. I immediately asked about it…turns out, it was the wrong med! Parents, pay attention to the meds when in the hospital. If you don’t know what it is….ask! On another occasion the nurse gave DOP the wrong dosing of medicine. I didn’t catch it until it was too late, but no harm was done. Generally speaking though, she had FANTASTIC nurses and doctors.

DOP got thirteen visits from Northpointe Church staff, none less than an hour long. Honestly, we were completely blown away by their love and support and care. This church knows how to care for their sick kids (and parents)!

62 Starbucks drinks were purchased. I know the name and face of four of the Starbucks employees who work at the hospital location. After two weeks of ordering the same tea at night, the baristas knew my order…so I had to change it up to make myself feel better.

2 of the night guards know me by name and face.

I ate 26 grilled cheese sandwiches with fries or tator-tots.

DOP had 6 MRI scans.

13 days in PICU (Pediatric Intensive Care Unit).

3 days in a recovery room.

14 days in the rehab center.

The operating room is billed by half hour increments.

1 unit of blood was given during surgery.

296 medications given.

314 general and hematology labs performed.

9 chest x-rays taken.

1 page…the total length of the form giving permission to perform brain surgery. One. Single. Page. (Car salesmen could learn something from hospitals)

28 pages….the detailed billing for just the first 20 days in the hospital.

I wrote 9 papers and read 3 and a half books for my university classes. Don’t ask me what they’re about…I have no idea.

DOP took 23 visual, verbal and motor skill tests over two days for a Neuropsych Evaluation.

87 bazillion….the number of texts and private messages Brandy and I received and sent.

3” by 2.5”….the size of the tumor.

4”…the length of the incision on the back of DOP’s neck.

54 meals were brought to Brandy and the kids at home or to me at the hospital.

Our best friends, Randy and Monica, spent countless hours at our house watching our other kids, making meals, and making sure our kids did their school work and chores. One of our babysitters, Sam, also spent a significant amount of time helping too.

Our other kids went through 50 boxes of Kleenex and 10 bottles of Musinex because they were all sick during the same time…for almost as long.

1 visit to urgent care for Brandy.

2 feverish kids.

7 people swooped in to help our family within a half hour of us posting on FB about our daughter’s condition.

56 nightly visits from Little E (in to see Brandy) because DOP was “not in bed.”

I took 23 showers (don’t do the length-of-stay comparison here….)

3 kids started public school for the first time (on surgery day)

7 hours…the exact amount of sleep I got during the whole month. Total.

All this for one Daughter of Purpose. Our family is exhausted, but we are on the recovery now, thanks to living low while at home and all the support we received from everyone.

Nathan and Brandy

Update on Daughter of Purpose January 31, 2014

DOP is doing well in rehab. Every day there is a marked difference in her motor skills and abilities. She is talking more, although not as much as pre-surgery. She’s getting more sarcastic with the nurses and therapists….DOP at her finest!

She is eating very well and asks for all kinds of stuff we wouldn’t normally allow her to eat….somehow I’ve become a pushover when she asks for candy at 11pm. Several Gatorade bottles are drunk each day.

Last night when she went to bed, she was facing the left side of the bed. When I checked on her about an hour later, she was lying on her back. When I woke up this morning, she was facing the right side of the bed. She can turn in the bed all by herself! That’s a big jump from just a few days ago when she would yell in agony when we adjusted her neck.

Her daily schedule has increased and is quite rigorous. There are now three sessions each day for a half hour each for both OT and PT. This comes to a total of three hours of hard work throughout the day. Both therapists communicate well with each other and with Brandy and I so everyone knows what everyone is doing.

Target practice on dad is apparently a fun therapy.

DOP practiced her aim and arm strength by shooting balls her brother.

DOP can also now sit up in bed on her own and helps dress herself. She brushes her teeth in the morning and can use forks and spoons to feed herself fairly well.

Relaxing in bed.

Like I said….there is much improvement!

Anxiety From Walking

There is one thing that is kind of new and rather unexpected. She suddenly has this massive fear of walking and falling. Both therapists are working with her on standing up and walking with a walker and this is a major component of her rehabilitation. She is able to do it fairly well given the circumstances. However, for some reason, she is totally freaked out about it. When we ask her to stand up, her anxiety shoots through the roof. She begins to cry and yells out, “I don’t want to do this! I don’t want to do this!”

Honestly, I have not seen her have anxiety like this since her Gotcha Day when we took her from the orphanage five and a half years ago. When it started this morning, I was rather surprised. We talked with her to make sure she was not in any pain. She is not. She is simply scared of falling.

Now here’s the thing….anybody that knows DOP, knows this is really odd.

DOP falls all the time! She always has! And she never cries about it or is scared to fall again.

Until now…for some reason. She’s been through a lot. We certainly get that. But everything else has been fine with regards to her rehabilitation. This just kind of came from nowhere. And she hasn’t even fallen once yet!

We discussed it with the Rehab doctor and later in the day someone from Psych came to meet with us. Basically, we agreed we would wait another day or two to see if this subsided on its own before any sort of medication is discussed.

Please pray for this. Everyone has been very supportive and encouraging when it happens. We pray with her daily and in the midst of her anxiety, Brandy and I have each stopped the therapist to pray with her. Aside from this one hiccup, she is doing great! Please pray her fear of falling subsides and her anxiety disappears.

Child Life

The Child Life department at the hospital is amazing! Every day we get to do something new and exciting. From them delivering movies each day, to playing games and borrowing books, to having a volunteer play the violin for us, this department knows how to help kids have a good time and forget they’re in a hospital. Yesterday, Blue the dog, came to visit. Two days ago, we had someone come and do music therapy with both girls in the room at the same time. The girls played drums while the therapist played a guitar and sang worship songs. We all loved it.

Blue, the Sheep Dog, sitting on the bed with DOP and CTB.

A couple of days ago, we took the girls to one of the play rooms and met several other kids and volunteers. While we played cards, one of the volunteers played his violin. It was fun!

Playing cards in Child Life with violinist in the background.

A Big Room

Our roommate, Cloe the Brave, was able to go home today. Yeah for her and her family! While we celebrate that her friend gets to go home after nearly three weeks of being in the hospital, we are sad to have her leave us. Like us, her family has been through a difficult time and it was nice to be able to share our story together. But now, Cloe and her parents can sleep in their own beds, in their own comfortable home. Thanks for all the UNO games and good laughs!

Playing more cards with our roommate.

For the moment….we have this massive room to ourselves.

One Week To Go

After meeting with the Rehab doctor yesterday, she suggested we had about a week left here in the hospital. The goal is to get DOP to a place that everybody feels comfortable with her leaving by next weekend. This would put her (and me) being here for a total of one month. Ugh. It feels like way more than that. Based on her performance, this may change by a day or two either direction. Certainly, the anxiety issue needs to be resolved first.

Pray we’re outa here soon!

Thanks for praying and for keeping DOP in your thoughts.

Nathan and Brandy

Update on Daughter of Purpose, January 29th

Sorry, I have not updated much. Brandy has kept most people up to date with the basics via Facebook. Here’s where we are at with our little Daughter of Purpose.

We’ve moved to the Rehabilitation Wing of the hospital on Saturday night. We always move in the middle of the night….because it’s fun….and never wakes the kids up….and is awesome….and easy since you’ve already started sleeping….

Sunday we had a fairly easy day because they don’t do any therapy on Sunday. Monday started DOP’s three hours per day Physical and Occupational Therapies. The teams that are working with her are great. She doesn’t like it at all, but she is very easy going and does what they ask for even when it hurts. It’s just in her nature to not say no. Already we see improvements to her motor skills and movements.

She can sit up in the bed (after some help of getting there) for a minute or two and can even lift her arms above her head and bring them down in a somewhat controlled fashion. The PT guys got her to stand up out of bed just to evaluate where she was at. She screamed most of the time, but she did it! There is a long way to go and our best estimate is that she’ll be here for a week, possibly two.

Standing…in a bit of pain.

Please pray for her strength and coordination and a good spirit of motivation to get out of here.

After not pooping for more than two weeks, the doctors prescribed a few different medicines to help this problem…which eventually worked…and then worked too well! So those meds have now stopped. In fact, except for one stool softener, she is OFF ALL MEDICINES whatsoever! In fact, after going to the bathroom this morning, the nurse never put her heart and oxygen monitors back on. Woot! Woot!

Also today, the surgeon pulled off all the remaining steri-strips off DOP’s neck so she could look at the original incision and stitches. It looks great! I had to count the stitches for fun….20!

20 Stitches!

MRIs and CSF

DOP had another scheduled MRI this morning to check the pressure in her ventricles again. I’ve had several people ask me about why she keeps getting MRI’s and what they’re looking for….so here’s the best explanation I can give.

There are four ventricles in the brain and they are essentially hollow areas that produce and store cerebrospinal fluid (CSF). This is the fluid that your brain and spinal cord sit in and creates somewhat of a “cushion” (among doing other things I don’t understand). The tumor was located mostly in the fourth ventricle which also allows the CSF to flow down into the spinal column. So when they removed the tumor, the hope was that part of the brain tissue would just “go back to normal” and fill in where it is supposed to be. The remaining “cavity” would be filled with CSF which is what is supposed to be there anyway.

Still with me? Good.

When the ventricles become too full of fluid, this increases pressure in the brain….that’s bad. So the reason DOP keeps going in for MRI’s is to check the pressure that is building within the ventricles. We have a picture set of what they looked like prior to surgery, but since that contained a 3″ mass of a tumor, that’s not good for a baseline. So the day after surgery, they did a full MRI to use as a baseline. During that scan, DOP still had the EVD line (Exterior Ventricular Drain) exiting her head so this allowed the surgeons to more-or-less control the amount of pressure in her head. So they used this scan as a baseline when the ventricles were at the smaller size post-surgery.

Scan of ventricles a few days after surgery.

Since they removed the EVD line, the only way to know about the pressure in her head is to watch for visible signs and use an MRI. Visible signs are nausea, headaches, eye issues like double-vision, blurred vision or blindness, and a few other things. Except for DOP having double vision, she has experienced none of this. But the doctors are not sure if her double vision is from too much pressure or simply side effects from having their hands and a bunch of sharp objects poking around inside her brain. So we look to the MRI.

If she continues to show too much pressure, then the solutions the doctors would take is to install a shunt. It would be a small tube located under the skin that would run from her head, down her neck and into her lung cavity or some other location that can absorb the extra fluid. It would be permanent…as in, she would have it forever. That would suck.

So we asked all of you to pray that the pressure would go down so she wouldn’t need the shunt.

Of the last three scans, the pressure has seemed to decrease to acceptable levels and with this last scan, the ventricles looked their best. So no shunt! Yeah! For those of you who prayed…thank you so much. For those of you who didn’t…well, you can pray for the next issue and redeem yourself.

Double Vision

Please keep DOP and her double vision in your prayers. She doesn’t seem to be bothered by it. But it bothers us! We were hoping that this problem would go away sooner, but it has stayed fast and we’re not sure it is getting any better. She watches the TV with both eyes open and she doesn’t want to wear a patch on one eye. Both the in-house doctors and the neurosurgeons test her eyes daily and know it’s an issue, but they don’t seem overly concerned. Is this because double-vision is an acceptable collateral damage as compared to….death from a tumor? Or are they not concerned because it will go away? Or are they not concerned because it can be fixed later with corrective lenses? We’re just not sure…

So please pray that DOP regains the perfect vision she had before this whole ordeal started. Our God is bigger than a tumor and bigger than double vision.

Lastly, our friends whose daughter had a heart attack two days after we came into the hospital is now sharing a room with us in the Rehab Center. They refer to her as Cloe The Brave (CTB) because she has always been so brave in this and previous heart surgeries. We’re privileged to allow the girls to see each other and do rehab together! Many of you know both families and have been “praying for the girls” together and we both appreciate that so much!

Thanks for praying and caring so much.

Nathan and Brandy