Ramya's Appointment with the Orthopedic Surgeon

On Monday we trekked back down to Cardon Children's Hospital to see Dr. Goggins, our orthopedic surgeon, but this time for Ramya.  This was her first visit with him as she previously saw Dr. Segal with Madi. 

Dr. Goggin's examined Ramya and said she looks good... her hips seem to be ok, her back seems to be straight, and he agreed with our decision to move up from KAFOs to HKFOs.  He was in a cheery mood and spent a long time with us.  It's so much nicer to see doctors out of their private office, instead of CRS.  At CRS they always seem rushed and stressed, but are always so much more relaxed in their offices. 

After the hospital I decided to take the kids to Butterfly Wonderland.  We have never been, and it's on the way home, so I figured it was about time!  The kids had a blast!  There was a 3D movie, a place you could view chrysalises of all the different kinds of butterflies they get, a really neat habitat with thousands of butterflies in it, a small aquarium, and a few other exhibits with bees, ants, and other desert creatures.  The really loved the 3D movie on the butterfly life cycle and butterfly migration.  They kept reaching out and trying to touch the butterflies.  They also loved the butterfly habitat and got very excited when a butterfly landed on Madi's foot and stayed for a while.  Ramya did NOT want the butterflies to touch her and kept hiding behind me, but she really did have fun too.  She loved looking at the butterflies, she just didn't want them near her.  Here are a few pictures from our visit...

 

(after they emerge, they catch them and put them in the large habitat)

 

 

 

(This is the one on Madi's foot)

 

Conner wanted to make sure that Ramya knew all about scorpions and centipedes (part of their extra exibits).  He insisted on lifting her up himself and explaining to her that if she ever saw one, she should not touch it, get away very quickly, and tell mom.  I made sure to hover just in case she slipped, but he did great and was quite proud of himself.

 

 

 

Our next appointment with Dr. Goggins isn't for 6 months for both girls, and this time, I think I can coordinate them!  YEAH!

 

Updates from our most recent appointments.... Neurology, Orthopedic Surgeon, PT, OH MY!

I just realized I never updated from our appointments last week! 

On Thursday the week prior (the 12th), Madi saw Dr. Goggins, our orthopedic surgeon, at Children's Rehabilitative Services (CRS).  We got some better x-rays so we can better see how her scoliosis is doing.  Her degree of scoliosis when standing in her HKFOs was 42 degrees.  When she was laying down, though, it went to 27 degrees.  He felt it was a good sign that her back is still flexible.  He didn't want to tell me if he thought she was a good candidate for a detethering surgery and he told me he wasn't a neurosurgeon.  This is why I hate that we don't have a multidisciplinary approach here in Phoenix.  Instead of the doctors talking to each other, we talk to each one separately, often getting passed back and forth.  It really frustrates me.  Don't get me wrong, I'm thankful we have amazing doctors here to help us out, but I just wish the doctors would talk  to each other as well in order to come to a conclusion about what they felt was best.  Anyhow.... He felt that waiting 6 months and x-raying her again would tell us more about if she is stable or changing.  He did also say her scoliosis and tethering are in the same area, meaning her scoliosis is likely from the tethering, but we don't know if de-tethering would correct the scoliosis.  He also said that he didn't see any big urgency to do anything about her spine right now, so that was good news.  I have an appointment set for 6 months, but also have an e-mail in to the neurosurgeon to see what he says about her degrees of scoliosis. 

On Tuesday I saw the dermatologist.  I have a few spots I like to keep an eye on (I've gotta keep myself healthy for these kiddos!), and everything looked fine.  Yeah!

On Wednesday Madi saw Dr. Condie, our neurologist.  We talked about her last seizure (she hasn't had one since the one a few months back) and racked our brains trying to figure out if there was anything concrete that could be the cause.  There didn't seem to be any reason, other than she did go through a growth spurt, meaning her dosage might have just been a little low for her.  We are keeping her dosage of Kepra the same, but will adjust it again when she gains weight again.  It was a pretty boring appointment, just like we love!

On Thursday we headed back down to CRS so that Madi could get evaluated by the physical therapist there.  We already have an amazing physical therapist, and are not looking to switch, but we are still fighting insurance to get Madi a medium Rifton Dynamic Stander, and CRS thought this may help.  The PT agreed Madi needs a bigger stander, agrees that it's beneficial for her and could tell she uses it often, and is working on submitting a letter for us with the verbiage they are looking for.  We've been appealing and have not been getting anywhere, so hopefully this does the trick!!

In other news, I got a letter this week stating that Ramya was approved for the department of developmental disabilities (DDD), meaning she will now get a secondary insurance through the state.  YEAH!!!!  This will pick up the out-of-pocket money we spend on therapy every week for her.  It also means I can FINALLY coordinate their appointments.  I had the girls seeing the same specialists, but because Ramya didn't have the secondary, she couldn't go to CRS, meaning she saw them out of their office, and Madi saw them out of CRS, and none could be coordinated.  So awesome that we can coordinate now!!! 

I think that's about all the updates we have for now.  Tomorrow we head to see Dr. Goggins, our orthopedic surgeon, out of Cardon Children's Hospital for Ramya's appointment, so I will update on that appointment soon. 

Have a blessed week!

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!

 

Our Appointment with Our New Orthopedic Surgeon

Today we made the trek down to Caron Children's Hospital to meet with Dr. Goggins, the doctor that we were hoping would take Dr. Segal's place.  Our appointment was at 3:15, and we live about an hour away, so we left at 2:15 to make it there in time.  We checked in right on time but actually didn't get to see the doctor until about 4:45, so it was quite the wait. I am happy to announce, though,  that we liked Dr. Goggins and plan to use him for Madi's upcoming surgery, as well as our future appointments.  He spent quite a bit of time with us and never tried to rush us along.  He was sweet with Madi and didn't seem to be bothered by her mini-meltdown during the appointment.  We talked about Madi's tight heel cord, the plan to fix it, the stander appeal we had in the works, her recent MRI, her scoliosis and tethering, and all of that fun stuff.  He is going to help us appeal her stander and seemed to have a good plan of attack.  He said he would write a letter with everything in it they were questioning so that they didn't have any more arguments, but is going to have his nurse help him with the logistics to make sure that it was done correctly.  I asked him to review her recent MRI and his findings left me quite hopeful.  He had a bit of a hard time seeing her scoliosis, as one scan stopped half way through where her scoliosis is located, and the other one started half way through.  He said he thought he was able to see it good enough, though, to see how she was doing.  Her spine is curved, but only down lower where the tethering is.  He said it was about 20% curved, which is a huge difference from the 50% we were told after her last x-ray.  Scoliosis between 20% and 30% can often be stopped, or even reversed, with the de-tethering surgery.  He also thought that the spine wasn't twisted/inverted, just curved from being pulled.  What amazing news!!  He also had a good plan for getting accurate x-rays in the future, so that we can better judge how her scoliosis is doing.  He's also on board with coordinating her heel cord lengthening surgery (the one he would do) with the spine detethering surgery.  The bummer is that she will have a cast on for 6 weeks, which will keep her out of the pool, but between the lengthening surgery and the cord release, we hope to keep her left leg/foot nice and flexible.

So that's that!  We have a new orthopedic surgeon and we are hopeful that we will get great care with him.  God really answered our prayers!  Thank you for joining us in prayer!

The Tethered Cord Verdict Is In.... Looking For Advice

Whew, what a day!

This morning we started our trek to Cardon Children's Hospital to meet with Dr. Moss, Madi's neurosurgeon.  He brought up her MRI and reviewed the results.  Her MRI showed significant tethering.  He basically said she was very significantly tethered and absolutely needed surgery.  Although I hate the idea of her going through another surgery, I was praying that it would be a very clear "yes" or "no" to surgery, and am thankful that it was.

Madi's Chiari II malformation looks good.  It's not pulled down too tight, it's not being too compressed, and he doesn't see any problems there.  Yeah! 

Madi has started developing a syrinx at the top of her spina cord, but it's very small, so he's not worried right now.  It's just something we will keep an eye on.  I'm so glad we don't need to deal with one more thing right now. 

In enters the curve ball, though, and this is the tough one.

Dr. Moss is going to try and clean up Madi's scar tissue by de-tethering her as much as he can.  He did tell me, though, he felt he might need to do an aggressive de-tethering.  What does an aggressive de-tethering look like, you ask?  Well, that's the part that is not so pretty.  The neurosurgeon actually goes in and removes the lower part of the spine, the part with nerves that do not function, below the area that does function, to be able to fully free the spine and fully de-tether/release it.  Yikes.  I am so hesitant to do something that is so permanent.  I mean, SO permanent.  On the other hand, though, if she is really significantly tethered, and he can't release her with out it, then we don't know if the surgery will be enough to help her.  Her left leg keeps getting tight, despite standing daily in HKFOs.  Her bladder was looking amazing, then got spastic and she had to have the vesicostomy, which is likely related to tethering, and now her scoliosis, which is for sure related to tethering.  If we chose not to be aggressive, and her scoliosis continues, we are looking at a rodding surgery, in which they will have to then do the aggressive release anyway, because it's the only way they can get the spine fully straight.  If we do the aggressive de-tethering, and one day some new advancement comes along, she wouldn't be a candidate any more.  Dr. Moss doesn't think anything huge is headed our way within the next 20 years, but who knows!  Either way, she will re-tether, but the aggressive surgery leads to less of a chance of needing another detethering surgery, where-as the non-aggressive route may lead to needing another de-tethering surgery, as well as a rodding surgery.  It's such a hard decision.  Not de-tethering aggressively could lead to life-long damage to her spine that cannot be reversed, but aggressively de-tethering takes away future options.  Bleh.  I also have a call in with the urologist to see how the aggressive or regular surgery will impact her bowls and bladder.  I bumped up our appointment with Dr. Segal, our orthopedic surgeon, so he can review her MRI and see how her spine/scoliosis looks in that, versus in the x-ray we took.

Dr. Moss said he won't know what he thinks we need to do until he gets in there.  At that time, he said he would call me (I'll be there, but in the waiting room, so he'd call me in the waiting room), tell me what it looks like, and I'd have to make the call.  I'd either tell him to go ahead with the aggressive detethering if that is what is needed, or to just do what he can and leave the rest, not doing the aggressive surgery. 

I really wish Madi was older and could make this choice for herself.  I really, really wish there were better treatment options, but as far as I know, there are none.  So, David and I have a lot of praying, researching, and talking to other parents that we need to do.  This is a big decision and I really want us to have peace about whatever path we take.  I don't want her to end up needing rods and other de-tethering surgeries, but I don't want to do something permanent either.  It's a lot to process!

Right now I am praying for wisdom and answers.  I'm praying that God will put the right people in our path to help us get direction on how to proceed.  I am also praying that she just plain will not need the aggressive surgery, which would be huge.  I am praying, above all else, that he will get in there and decide he can de-tether her sufficiently without being more aggressive.  Please, please join us for prayer!!

Hospital time will be about 3-5 days as she recovers.  She will have to be flat on her tummy for at least the first 2 days.  There is a good chance we will be in the ICU, but we are used to that.  In fact, I spent the first years of Madi's life not realizing we were always in the ICU.  First it was the NICU and then the PICU, but always the ICU.  Once we made it up to the 8th floor (for seizures), I realized there was such thing of hospital life outside of the ICU :).  Once we are home, she will have a few more weeks of down time before she can resume her regular activity, with either surgery.  Please be praying for quick healing and minimal pain for her.  I explained the surgery to her and asked if she had any questions and her questions were...

1- Will it hurt?  To which I answered that it might, and if so, she needed to tell momma and the nurse so we could get medicine and help her feel better.

2- Will the mask you put on me stink?  To which I answered, probably, sorry baby, but you can ask if they have one that smells better.

and

3- Will you hold my hand and sing me "twinkle twinkle", which I of course said yes to.

After that, she went off to play again.  As long as she knew the answers to those questions, she felt ok and didn't really worry.  Oh, and the good news is Dr. Moss said we are not in a hurry, so he is ok with waiting until preschool is over in May, so that is when we are looking to book the surgery.  It will likely be the 3rd or 4th week of May.  He also said he will request not to have the last anesthesiologist I had, and also wants to know his name so that he doesn't use him again. 

We are thinking of driving to California in April for a few days and going to LEGOLAND before the surgery.... kinda our last little "hurrah" for a while.  David is doing really well at work again (thank God!!!) and has his confidence (mostly) back, so we should be able to go.  We found one buy-an-adult-admission-get-a-kids-admission-free coupon, so we are hoping to find one more and only have to pay for two adults and one kiddo to get in.

That's all our news for now.  We appreciate your prayers and ask that you will keep sending them our way! 

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!!

The Big (Tethered Cord) Plan

Today we saw Dr. Moss, Madi's neurosurgeon.  He's not only an amazing neurosurgeon, but he is also gentle, takes his time, and he truly cares for each of his patients.  Dr. Moss has been Madi's neurosurgeon since before she was even born.  We love him! 

I talked to Dr. Moss about everything going on with Madi, from her head to her (sweet little) toes.  He agrees that it sounds like she may have a symptomatic tethered cord.  She has multiple tethered cord symptoms going on right now... renal reflux, tight left heel cord (that was released but re-tightened, even though we work on standing daily in HKFOs), scoliosis (that may be worsening), and spastic bladder.  Before deciding about surgery, he would like to do a big bang MRI and a full spine MRI, which we can then compare to the MRI she had about 2 years ago.  The plan is to go in for the testing, then go straight to an appointment to see him.  At that appointment, we will determine if we are going to do the tethered cord release surgery or not. 

We did get some really great news at the appointment, and I am so thankful for that!

1. We would do surgery at Cardon Children's Hospital, as he now works there primarily, instead of at Phoenix Children's Hospital. I was nervous about this, as we have only been there in the past for visits, and I do not know their policies and the such.  He assured me that if we do surgery there, I can go in with her while she is going under anesthesia and that I can stay with her during her entire stay, even if she ends up in the ICU.  I told him I've heard stories of families (in other states) not being allowed to stay with their children in the ICU, and he assured me he would never let that happen.  I feel SO much more confident about being at Cardon now. 
2. If we do the tethered cord release, he would like to do an aggressive release.  He does not feel that she will loose any mobility or sensation from the surgery, which is always a risk.  He also thinks that doing an aggressive release will clear things up, and keep things cleared up.  He does not think she would need another release in the future.   
3. We can do a heel cord release at the same time and hopefully get her left leg nice and stretched out again.  Because she does not have sensation in her feet, this additional surgery should not bother her, but will save her from needing to undergo surgery again in the future to release it. 

They said to expect a call to schedule the MRI and appointment within a week.  I will keep everyone updated on when our next appointment will be.  Please continue to pray for wisdom and guidance for David and I, as well as Dr. Moss.  Thank you for keeping our sweet girl in your prayers!