Our Neurosurgeon Report from Today

Today we had a neurosurgeon appointment down at Cardon Children's Hospital with Dr. Moss.  We reviewed Ramya's MRI scan from 6 months ago (endocrinology wanted a sedated MRI due to her early puberty, so we had Dr. Moss send in orders for a full spina MRI so that we could coordinate, even though we didn't need the MRI quite yet.  It's always nice to have one instead of two!!).  Ramya's spine is tethered, as we would expect since she has had spinal surgery, but because she is not symptomatic we are not looking at doing surgery to release it.  She has a Chiari II malformation as well, as we expected, but fluid is able to flow around it (her brain stem ;)), and she doesn't have any chiari symptoms, so we are not going to do anything in that area either.  Her pituitary gland looks like something is putting pressure on it, but she does not have any cysts and the fluid levels in her ventricles look good, so he's not quite sure why.  It may be the reason she started going in to early puberty, but there is really no way to know.  So basically, lots of things we expected and nothing that we didn't, no need for surgery, and we don't need another appointment for a year, so I count that as a win!  Yeah!

After the neurosurgeon we grabbed a quick lunch at Chipotle and headed over to our naturopathic doctor, Dr. Vitaro, to discuss the results of some blood tests I had done.  I have a family history of thyroid problems and we felt it was a good idea just to keep an eye on my thyroid.  My overall thyroid level looks good, but when you break it down, I do have an area that is below the "normal" range.  I'm going to start taking a natural thyroid supplement to try and keep my thyroid healthy, as well as hopefully boost up my numbers.  He also tested me for any possible underlying autoimmune disorders, since that can effect the thyroid.  Everything came back negative, so I have nothing underlying going on, which is great!  My only real thyroid symptom is that losing weight takes a lot (I mean lot!) of work for me.  Part of that is the fact that I've had kids, part of that is the fact that I was addicted to graham crackers and milk when I was pregnant with Madi, part of it is the fact that I like food, then of course there's the fact that I'm 32 and my metabolism is slowing down.  Oh, then there is that whole working out thing, and the fact that I haven't consistently worked out in a long time.  All of those combined makes it tough!  I've been eating really, really well the past few months (very little fruit (I actually had none the first month, but now have a piece a day), only quinoa and millet for occasional grains, lean organic meats, and lots and lots of veggies and some nuts... I've basically been following the candida diet), and have lost a little weight, but am having a hard time getting below my current weight.  I've been hovering around this number for quite a while.  I just started yoga and I am hoping that will help.  I'm starting to feel healthier, which is my goal, and for that, I am thankful!

On a totally unrelated topic, next week is Madi's last week of preschool.  The following week is actually the last week, but we will be in Boston getting a second opinion on surgery, so next week is her last week.  The teacher is letting me come in next Friday to do a few fun things with the kids to celebrate.  I can't believe the school year is almost over for her.  Next year she will officially be a homeschooling kindergartener!  I can't wait!!

Please be praying for our upcoming trip to Boston.  We are praying that we get answers on HOW to proceed with Madi's detethering surgery.  Thank you for your love and prayers!

 

MRI, Check!

This morning Madi and I left at 8:00 to go to Cardon Children's Hospital for her MRI to check for tethering.  The were scanning her head as well as her full spine.  We got to Cardons to check in at right about 9:00, which was a little early (make a note of that... we are never early!!).  They took us back pretty fast, and we were able to start the scan a little early, at about 9:45.  At first the anesthesiologist said I couldn't go back with her.  He said he doesn't like to divide his time and it would take attention away from her.  I assured him that I would stay out of the way and would not ask questions.  I told him I knew what to expect and that I had gone in many times before, even for surgeries.  He told me he has some moms trying to interfere or fainting.  I assured him that would not be me.  I also told him Dr. Moss had promised me I could go back.  He didn't love it, but he did decide to let me back.  I was thinking we were just going to have to leave and re-schedule with a different anesthesiologist, so thank God he changed his mind!  I held Madi's hand and sang to her while she fell asleep.  After one "Twinkle Twinkle" she was out.

They said the can could take as long as 4 hours, though I knew it would be less.  It ended up taking right about 2 1/2 hours.  They came and got me while she was still sleeping, and we let her sleep until she woke up on her own so that she would wake up peacefully.

 

 



When Madi woke up she was a little cranky and a little groggy but not too bad.  They were able to get the IV in her foot (yeah!) so that wasn't bothering her.  The only thing she was upset about was her thumb.  Having the pulse-ox monitor on her thumb and then having her thumb in the same spot for so long had caused a loss of blood flow.  Her thumb was a little purply and puffy.  They tried getting ice for it, but she didn't want it. 

After giving her a few minutes (and some water... she said no to a snack) they discharged us and sent us upstairs for an x-ray.  Madi has a programmable VP shunt, which gets programmed by a strong magnet.  Because the MRI machine is essentially a large magnet, it can re-set the level the shunt is set at.  We had to wait quite a bit, but then they called us back.  Right about the time we stood up, Madi looked at me and threw up all over myself and herself.  Poor baby.  We had skipped anti-nausea medicine because she said her tummy didn't hurt and she didn't want it, but we should have given it to her.  After throwing up, she felt much, much better and was back to her old self.  After the x-ray I took her to the cafeteria to eat.  It was almost 3:00 by then and she hadn't eaten all day!  She picked a hot dog with no bun, French fries, and chocolate soy milk.  She was very happy to eat and was able to keep her food down just fine.

We finally left there and made it home right about 4:00pm.  It was a long day!  Now we're getting ready to eat dinner and watch a family movie.  Relaxing just sounds good right now!

We won't see Dr. Moss until next week as he is out of office this week.  I will update everyone with results once we have them.  Thank you so much for your prayers, I know God was watching out for her!  Please pray that we get clear tests results and for wisdom, discernment, and clear direction for Dr. Moss, as well as for David and I. 

Madi's Scoliosis Brace and Upcoming MRI Date

Last week we picked up Madi's first scoliosis brace.  She was very excited to pick up her brace and was even more excited to try it on.  She gave it a few kisses and announced that she "loved it." 

 

Madi with Ron Whiteside, our go-to guy at Hanger that we love

Then we brought it home, put it on, and she realized she loves her brace.... just not when it's on.  The first few days of having her wear it were a little rough, involving some tears from both of us.  Unfortunately it makes her body stiff, which throws off her movements and balance.  It's hard seeing her feeling limited in her mobility, as her movement is already limited.  I kept reminding her (and myself) that it would stretch out soon and would feel more comfortable, and that she would learn how to move around in it and get used to it quickly.  Ramya and Conner have also been encouraging her to keep trying, it's very sweet.  I am so very thankful for her amazing determination and positive attitude.  She really is adapting quickly to it and is doing very well.  I am thankful that she will never let anything slow her down, especially not an adorable little pink scoliosis brace!

Madi takes off her brace when she stands in her HKFOs, goes potty, and for a few little breaks here and there.  She also does not have to wear it while she sleeps.  Sometimes I'll notice she doesn't have it on and I will ask her what happened to it.  She will tell me, "I said, "bippity, boppity, boo, and POOF!  It disappeared!"", which really means, bittity, boppity, boo.... I used it as a door stop, mom...

 

 

Did I ever mention that she is creative?!?!?  Ha, I love that girl.   Yesterday I took Madi potty, got her re-dressed, and then told her she had a few more minutes and then she would need to put her brace back on.  I walked out of the room for a second and when I walked back in, she was wearing her brace.  Apparently Conner put it on her, correctly, and she was pretty excited about it.  He was pretty excited and proud as well.  He got the brace in the right place, and even had the straps buckled the correct length.  I was pretty impressed!  Here's a video of Madi explaining why she wears her brace...

 



 

In other news, Madi's head and spine MRI is all set for this Tuesday, February 25th.  We have an 8 am check in at Cardon Children's Hospital, so we will leave around 7 am.  She will have to be sedated and they said to plan for up to 4 hours, though I think it will be closer to 2 hours for the scans.  They are doing 4 scans, and set the estimated time at the max time for each scan.  Her little body just won't take that long to scan, though.  She will have to go NPO (nothing by mouth) and midnight. 

Please be praying that Madi handles the anesthesia well and that they are able to quickly and efficiently get the images they need.  Pray that the anesthesiologist will let me go back with her while she falls asleep, which is really huge for Madi's peace of mind.  Pray that she wakes up calm from anesthesia, as she usually wakes up very confused and angry.  Please also be praying for wisdom and discernment for her neurosurgeon, Dr. Moss, as well as David and I, as we determine if and when she will need detethering surgery.  If she needs it, I am hoping we can wait until May, when she is out of preschool.  Not only would it be summer break, but also, she will be homeschooling full time after that and we will be a little more flexible.  Our homeschool co-op, which she loves, will also be on break for the summer, so she wouldn't miss homeschool co-op.  I am also praying (and PLEASE join me in prayer for this) that her scoliosis isn't truly as bad as her x-ray looked (where she was sitting on her out-of-socket hip) and that doing the surgery, if we decide to go that route, will actually reverse her scoliosis so that she does not have to wear a brace any more, or at least not all day like she wears it now. 

Thank you for being our prayer warriors!!

Fitted for Her New Back Brace

On Friday, Madi was fitted for her new back brace.  The plan is for her to wear this all day, but not at night or when she is standing in her HKFOs.  It will be made out of the same plastic material as her HKFOs and is being custom made/fit to her by Ron (our go-to-guy) at Hanger Orthotics.

Madi was very excited to get fitted for her new brace.  I know she does not really understand what she is facing, but her enthusiasm and amazing attitude does wonders for this momma's heart! 

When she got her last HKFOs made, she was really bummed that there were not decals for eggs, caterpillars, chrysalises, and butterflies.  She wanted the whole life cycle of a butterfly on her HKFOs.  Ron remembered that and brought in a sample of a new decal they have that is all different types of insects.  Oh boy, that made her day!!  She tried to keep the sample, and then kept kissing it.  She is such a ham!  Ron promised he would keep the sections he cut out of her new back brace so that she could keep them.  She was pretty happy about that, and decided that it was ok to give the sample back to Ron. 

Ron made her a "special" tank top to wear under the casting material, like he always does when he has to cast her body to make a mold.  He uses a light meshed material and cuts it to go over her body like a shirt.  She always thinks these are treasures, and refuses to take them off.  Oh yes, she did wear that tank top (which she called a bathing suit) all day, even out to the grocery store ;).  She was so proud of her new "shirt".

We head back in a few weeks to pick up her new brace.  It can go under or over her clothes, but she will need a t-shirt under it so that it does not bother her.  I'm now on the hunt for light-weight tank tops, because it gets so darn hot here.  Adding a shirt and brace is going to get hot for her. 

Friday we go in to the neurosurgeon to discuss everything we discussed with Dr. Segal, our orthopedic surgeon.  I am praying for wisdom and direction for both David and I, as well as her team of doctors.  Her doctors are conservative with surgery, and really consider all the angles, so I am very thankful for that. 

Thank you for all of your prayers for our sweet girl.  We have really seen God's hand throughout our newest journey.  We were actually supposed to see Dr. Moss, her neurosurgeon, a few weeks ago, but they rescheduled the appointment.  The timing was perfect.  If we had seen Dr. Moss before seeing Dr. Segal, it probably would have taken us months to get back in with Dr. Moss to discuss the x-ray and newest findings.  Also, Tami, Madi's physical therapist, was able to go with us to our "big news" appointment with Dr. Segal.  It just so turned out that our appointment time was at the exact time Madi normally has therapy, so Tami offered to come with us.  We also usually wait at least 1-2 hours to see Dr. Segal, but this time, we were seen in about 30 minutes, which is a huge miracle in itself.  Because of that, Tami was there with us for the entire appointment.  It is awesome to have that second set of eyes and second opinion from someone who has seen Madi on a weekly basis since she was a baby.  I am so thankful for these little God moments, and how He is orchestrating everything and putting each little piece in its place. 

 

Update on the Neurosurgeon Appoitnment Today

Madi is officially tethered, which I really already knew.  It is not too bad, and it is lower down her back, but it is there.  Dr. Moss said that Madi is kind of in the grey area where she might benifit from a cord release, but at the same time, it may not be a huge necessity.   Our decision was to wait another 4 or so months, check her bladder/reflux again, and see if it has gotten better or worse.  There are basically 5 reasons to de-tether a cord, and Madi only has 1, but it's a big one.  Our goal with her bladder/kidneys is obviously to protect her kidneys.  The tethering may be why her renal reflux worsened.  If the cathing (we do this every 4 hours, so it works out to about 4 times a day) does not help her reflux, we will consider a detethering surgery.  This could be the only surgery she may need, or she could go through it only to tether again.  He did say that the rest of her spine looked good.  There were not "water" pockets up it like some children have.  Overall, things looked really well.  Thank you for keeping Madi in your prayers! 

Oh, another huge answer to prayer.....  Shriners is flying Madi and I down to their Las Angeles center in May to evaluate her.  If they decide that she is eligible for Shriners, they will help with some of her surgeries as well as standers, AFOs, and other items (not wheelchairs, though).  We will fly over on Thursday,  May 13th, stay that night, be evaluated on the 14th, and fly home that evening.  So that we can save money on airline costs, it will just be the two of us (Shriners is paying for my airfare, so our only cost will be hotel and food, but they only pay for one parent.  They offered to pay for David since Madi is still free, but we decided I would just go by myself).  They will also send a van to get us from the airport so we will not need a rental car.  I will stay with Madi in a hotel or, most likely, a Ronald McDonald house.  If they accept her, we can go to the local traveling Shriner's clinic in the future.  They do not have pediatricians at that clinic, though, so we had to go to LA for the initial evaluation.  If anyone is looking for a place to donate to, Shriners is it!  They are amazing!!

Tomorrow is the big MRI day!

Conner loves his sister very much!  She is lucky to have such a kind and loving brother!

Tomorrow is Madi's big MRI to check and see if she has a tethered cord.  Please keep her in your prayers.  She will be under anesthesia, which I hate, but I don't want her to be scared either, so I know it's a good thing.  It should take about 45 minutes for the actual scan, but we are supposed to get there an hour early, and I am not sure if they will keep us for a while afterwards.  Her scan is at 11:30 at Phoenix Children's Hospital.  We then see Dr. Moss next Tuesday and he will tell us how to procede, or if there is even a problem.  I am praying her cord is not tethered, but if it is, then I know that's in God's plan.  I will update you all as soon as I know something.  Have a blessed rest of the week!

Please keep Madi in your prayers....

Conner took this picture of Madi and I.  He's quite the little photographer!

I think I posted before that Madi's renal reflux went from a level 2 to a level 5.  That is pretty much the reason that we are cathing her now.  One reason for the change could be tethered cord, which is essentially where the nerves grow in to the scar tissue, causing problems as the child grows.  Here's a great explanation:

http://www.spineuniverse.com/conditions/spina-bifida/spina-bifida-tethered-spinal-cord

At birth, the spinal cord is normally located opposite the disc between the first and second lumbar vertebrae in the upper part of the lower back. In a baby with spina bifida, the spinal cord is still attached to the surrounding skin, preventing it from ascending normally, so the spinal cord is low-lying or tethered. Although the skin is separated and closed at birth, the spinal cord stays in the same location after the closure. As the child continues to grow, the spinal cord can become stretched, causing damage and interfering with the blood supply to the spinal cord. This can result in back pain, leg pain, changes in leg strength, progressive or repeated muscle contractions, orthopedic deformities of the legs and scoliosis, and bowel and bladder problems. A definitive diagnosis of a tethered spinal cord is made through diagnostic tests.

The shunt is checked through a computed tomography (CT or CAT scan) or magnetic resonance imaging (MRI). In some cases, the shunt is tapped to assess shunt function. If there is any question about shunt function, the neurosurgeon may explore or revise the shunt, before considering operating on the spinal cord.
If the shunt is working well, usually an MRI of the spine is done to exclude other problems. Additional studies such as a Manual Muscle Test (MMT) and special bladder studies (urodynamics) may be prescribed. These will be compared with prior studies to assess changes and to give a baseline against which to compare after the surgery. Untethering is generally performed only if there are clinical signs or symptoms of deterioration.


The surgery involves opening the scar from the prior closure down to the covering (dura) over the myelomeningocele. Sometimes a small portion of the bony vertebrae (the laminae) are removed to obtain better exposure or to decompress the spinal cord. The dura is then opened, and the spinal cord and myelomeningocele are gently dissected away from the scarred attachments to the surrounding dura. Once the myelomeningocele is freed from all its scarred attachments, the dura and the wound are closed.


The child usually can resume normal activities within a few weeks. Recovery of lost muscle and bladder function depends upon the degree and length of preoperative implications. The combined complication rate of this surgery is usually only 1 to 2 percent. Complications include infection, bleeding, damage to the spinal cord or myelomeningocele, which may result in decreased muscle strength or bladder or bowel function. Many children require only one untethering procedure. However, since symptoms of tethering can occur during periods of growth, 10 to 20 percent require repeated surgery.



Although having a tethered cord (Basically, all children who have Madi's form of SB do have tethered cord, it's just not always problematic) would give us answers to why her bladder problems are worsening, it's not a good answer, because it means a yucky surgery and hospital time.  Though I would love to know why her bladder condition is getting worse, I'd also hate to see her undergo yet ANOTHER surgery and more anesthesia, so I'd really hate for it to be tethered cord.  We go in for a full spinal MRI on Wednesday at 10:30.  Madi will go NPO earlier that morning and will have to be sedated (put under anesthesia) for the MRI because it is a long 45 minute one.  They will let me be in the room while she is put under, then again when she is woken up, but I will not be able to be in the MRI room (though I plan to try and push for it again) during the procedure.  I hate that they have to put her under for it.  When they are doing a 'big bang' MRI to check her shunt, they allow me to go in the MRI machine with her.  Because this one is so much longer, though, and they have to do anesthesia, that will not be a possibility.  I am really sad about that, but it is what it is.  We then have an appointment with Dr. Moss, her neurosurgeon, on the following Tuesday to discuss the results.  I need to call and see if we will be going straight to surgery that day if it is tethered, and if I need to pack and prepare for that, or if we schedule surgery, go home, and come back.  Please keep our little Madi in your prayers this week.  We will keep everyone updated.