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!

 

Updates From Our Casa and Easter Picture Overload

I feel like I have SO much to update, but I can't think of it all right now.  Here's a few updates, though, that I can think of.....

1) I had Ramya tested for food allergies and food sensitivities, so both IgG and IgE reactions.  I had a feeling she had some allergies going on, as she would complain of a stomach ache after certain foods (like the pediasure the GI doctor told me to have her try) or would get diarrhea or constipated.  Sure enough, it looks like she has a lot of sensitivities going on.  Her big ones seem to be wheat, oat, egg, banana, beef, pork, and a few others.  The oat and egg are going to be very hard, as we aren't really a cereal family, so we mostly eat slow-cooked oatmeal, pancakes from scratch (which usually have some GF oat flour in them), or eggs.  She LOVES eggs and it's always my go-to when I need something for her to eat.  The beef is a big bummer because we buy local, grass-fed, organic beef and it's a good source of protein and healthy fats for her.  Luckily she can still have chicken, as she usually eats chicken pretty well.  I faxed our naturopathic doctor the results, as the testing was done through our pediatrician and local lab, so he's going to give me some feedback on the results so we can come up with a good game plan on how to structure her diet and dietary changes.  Luckily I'm no stranger to food sensitivities, so while I'm bummed, I know we will work through it and we will be fine.  I am curious to see how the changes effect her (emotionally, physically, etc...) and am praying for some positive outcomes. 

2) Madi's surgery date is officially set for Monday, June 2nd.  We were able to schedule for the anesthesiologist we requested, her neurosurgeon, and her orthopedic surgeon all at once, so that's a huge answer to prayer!!  Yeah!  Please be praying for minimal pain for Madi, a successful surgery, that she will not need the most aggressive and invasive surgery, that she will have even more function and feeling once she has it, that it will reverse her scoliosis, that she will not develop any infections, and that she will not need another.  Please also keep David, Conner, and Ramya in your prayers as they will be without momma for a bit while I am with Madi as she recovers.  Hopefully our hospital stay will only be 3-5 days.  Especially pray for Ramya, as she gets very disregulated when I am gone and her behaviors are intensified for a bit once I come home.  Please pray God will give her peace and that it will not be stressful for her, and that she will transition to my leaving and coming back well.

3)  We have not been to Boston yet, but will be headed there in mid-May.  We already know that she needs surgery, it is very obvious.  This appointment is to help us decide specifically HOW to do the surgery and how aggressive to be (you can read about this more in a post a wrote about a month ago by clicking HERE).  The reason we are going to Boston is because they have the top neurosurgeon in the Country there, and we want to know his opinion on how to do the surgery, so that we have clear direction on how to proceed.  We will not have the actual surgery in Boston.  Our neurosurgeon, Dr. Moss, is amazing and we trust him completely with this surgery.  Because how we do the surgery will be up to us, though, we want to get another opinion so that we can feel confident in our decision. Please be praying that we will get the answers we are looking for and that God will make it very obvious which route we are meant to go.

I think that's about all the updates I have for now!  We had a very blessed and wonderful Easter day with our families.  Here are some pictures from our day...

 

The kiddos with David's grandparents, their great-grandparents

The kiddos and David's parents

 



 

Cousins!

 

I finally got a smile from him :)

 

Looking beautiful in the purple dress she picked out

 

We kept our hair bows in.... shhhhh... it's a secret! If you mention them, she will take them out.

 

This boy loves his candy!

 

Bunny ears!

 

Holding cousin Solomon... such a sweet baby!

 

The girls with my dad, Papa

 

Aunt Angi, Cousin Lauren, and the Squirrels, I mean Girls....

 

My brother, Uncle Tony, and Conner

 

Treats from Grammy and Papa

The Big Hunt

 

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! 

Our Bad News Appointment Today

Sigh.

When you are a momma of a kiddo (or two ;)) rockin' Spina Bifida, there are a few things that always run through the back of your mind.

1. How is that shunt working? 
2. How is their urine looking today?  Do I think they are still UTI free?
3. Are their bowels up to par?
4. Is there any tethering going on I can't see?

There are a few more, but I'd say those are the big ones.  A little cold, every flu, every bout of crankiness, you question if it could be more.  I don't think this is a bad thing, I think it is just being an aware parent, and part of what goes along with the job of raising a kiddo with some extra health considerations, but regardless, it is always there. 

Today we saw our orthopedic surgeon, Dr. Segal.  He answered #4 for us for Madi.  Bummer.  We knew this day may likely come, but it's a day that I think every parent of a child with spina bifida dreads. 

Before our appointment, the nurse wanted to do a spine x-ray, as at our last appointment, Dr. Segal mentioned she had a slight curvature to her spine and he wanted to check it out.  Turns out there is a curvature.  A big curvature.  She has scoliosis at about 50%.  That's fairly major, and the ramifications of that percentage are not so wonderful.

There is a good chance Madi is so curved because her spine is tethered.  Every child with spina bifida that has had a back closure surgery IS tethered, however, if that tether becomes symptomatic, it's time to treat it, which means a de-tethering surgery. 

The good news is that a de-tethering surgery may stop the progression of the scoliosis.  Dr. Segal said anything over about 40% curved is not often fixed with the surgery, but it would hopefully stop the progression.  The downside of the surgery is that about 10% of children come out with less functioning than before the surgery.  It also leads to more scar tissue, which can then lead to more tethering, which then, of course, can lead to more surgeries to de-tether the spine.  It's a cycle that you do not want to enter unless you have to, though it is important to address the issues and have the surgery if it is necessary, as degeneration can progress by not doing the surgery. 

Dr. Segal wanted us to see Dr. Moss, our neurosurgeon, and talk to him about Madi's symptoms and the possibility of surgery.  Thankfully we were going in to see him next week anyway, so the timing is perfect.  Madi also has to get fitted for a scoliosis brace.  She will need to be in the brace the entire day, unless she is standing, or unless she is sleeping.  I made an appointment with Ron, our go-to guy at Hangar, for this Friday.  I am praying this will be an easy transition for Madi and that she will not hate the brace.  Tami, our PT, came with us to the appointment (This is the first one she has been able to come and I was so thankful to have her at this one... that was totally a God thing) and asked Dr. Segal what that means for her mobility.  Does that mean she has to be in her wheelchair at home, or can she still crawl and climb as normal?  (As of right now, wheelchairs stay in the car for when we are out and about, and we crawl, get held, or stand in the house.  I know we can't/won't do this forever, but for now, I feel it is best for the girls.).  Dr. Segal said that there would be know way we could stop Madi anyway, because she has such a determined personality, so there is really no point in trying.  He said Madi can resume normal routines in the brace, so that is great news!

Before we agree to the surgery, there are a few things I feel need to be done at our appointment with Dr. Moss, her neurosurgeon.

1. Madi's x-ray today was taken sitting up.  Because her left hip is dislocated, though, and her right hip is not, her body doesn't sit level.  Though I do fully believe she is curved, I think the percentage may be accentuated because of the way she sits.  I would like them to x-ray her again, but this time laying on a table, so that we can see how the spine looks at that point.  If it's still 50%, then that's ok.  It is what it is.  I just want to make sure.  Also, if it's slightly off, and she's at say 30% or so, then the detethering may help to reverse the scoliosis, which would be amazing.
2.  I would like to try and establish a baseline for Madi's spine, as this is the first time we have checked for scoliosis.  Madi had a sedated MRI done about 2 years ago where they checked her spine.  I would like Dr. Moss to review the scan, specifically looking at it for the degree it is curved, and compare it to her current x-rays.

After we review those two things and talk with the neurosurgeon next week, we will likely have a game plan for how to proceed.  I will keep everyone updated. 

Though today's news was not what we were hoping for, we know everything will be ok. After drowning myself in Starbucks and talking things through with David and my mom, I feel more at peace about how to proceed.  Madi is such a spunky and determined little girl, and I know she will not let this slow her down.  Though it looks like a setback, I know in reality it will make her stronger.  I wish you could have seen her today.  She was in her HKFOs, standing tall. She walked (with Tami holding her hands) right up to Dr. Segal, looked at him in the face, and said, "I want to walk by myself!"  I fully believe one day she will.  We have been talking about getting her a device like a TAOS or gait trainer to help her be able to walk independently, but Dr. Segal says he does not think it would be a good fit for her, as it would do too much work for her.  He also fully believes that she will get to the point where she can walk on her own (meaning walking in her HKFOs using a walker or her arm crutches, without needing the help and support of an adult) one day, sooner rather than later, and told her that.  He told her to keep working hard and getting stronger, and that she would soon be doing it on her own.  That answer seemed to satisfy her :). 

Please be praying for wisdom and guidance for Dr. Segal, Dr. Moss, David, and I.  Choosing surgery is not always an easy thing to do, especially when it is not life and death and there can be so much grey area, but sometimes it is just so important (like it was with her vesicostomy surgery).  The idea of another surgery with more anesthesia, more antibiotics, and more recovery time, is not ideal, but we really want to do what is best for Madi in the long run. 

Thank you for praying for our family and for walking our journey with us.  Your love and support truly do mean more than you will ever know!

 

Two Appointment Updates and My First Kiss!

Whew.... another busy week!

Tuesday we rushed off to Mesa to see our neurosurgeon, Dr. Moss.  He reviewed Ramya's CT scan and shunt series.  He's stumped as to what kind of shunt she has and why they put it in how they did, but the good news is, it's working!  He has no plans to touch it since it's working, and that is exactly what I wanted to hear!

Today we went down to Ron at Hanger and he got her all set up for KAFOs (leg braces that go from the ankle to the thighs).  He said he'll have them ready in about 3 weeks, so that's awesome!  We can't wait!  Ramya did great during the appointment and was very excited to pick the purple butterfly print for her new braces.  We set up an appointment to get her braces and get Madi's fixed (she grew again and needs them adjusted) in 3 weeks.  Ron and his office assistant were very excited to meet Ramya.  They have been waiting for her!

 

 

Tomorrow we are off to the pediatrician to have a little lump on Ramya's left "nee nee" looked at.  It just popped up and it's bothering her, so I wanted to get her in ASAP.  It feels like my cyst does, and I've never felt something like that on a child before, so we're off in search of some answers.

 

Saturday is our big open house to celebrate Ramya and so that all of our friends and family can come and meet her and spend time with us.  We are busy getting ready and can't wait!  We hope to see you all there (well, those of you that live locally that is ;))!  If you need our address, please email me at jamie_lugo@hotmail.com :).

 

OH!  Before I forget, I got my first kiss today!  She planted a big one right on my nose!  I give her kisses all the time, but I haven't gotten a spontaneous kiss from her until today.  Now I officially have gotten a hug, a kiss, and told "I love you".  Life is good!

 



 

Whew... Only 2 More to Go!

We are almost done with our few weeks of appointments.  It's been a rough few weeks for sure!!  We've seen the orthopedic surgeon, the neurosurgeon, the urologist, the pediatrician, the dentist, and we've had multple tests.  Next week we get to pick up Madi's HKFOs and get her wheelchair adjusted and then we are DONE!  WOOO HOOO!

Conner had to get a spacer put in a spot he had an absessed tooth that had been pulled.  We went in last Thursday at 12:20 pm.  He did great and is very proud of his new silver spacer. 

The poor guy couldn't eat or drink 3 hours before his appointment, though, and was really hungry.  I decided to take him for his first visit to Sonic and he LOVED it.  He sat in the front seat with me and we ate together and talked.  We were there about 45 minutes because he kept deciding he was still hungry and ordering more food :).  I spoiled him and let him get a nasty cherry slush that was probably full of red dye, lots of sugar, and high fructose corn syrup.. YUCK!  He sure loved it, though.  He has decided that every time he has to go to the denstist, he and mommy need to have a Sonic date.  He's such a cute and sweet little boy!



The wait to get in to see the doctors have been long, and it's taken lots of creativity to keep Madi entertained.  Here we are checking Mr. Potato Head's head circumference.  He seems to check out ok ;).

Of course, we tried on his glassess too.

Although the waits stinks, I am very glad that Madi has a team of doctors who spend time with us and really care about her as an individual.  Seen here is Dr. Moss, her neurosurgeon.  He is really an amazing guy and has fought for Madi since before she was born.  He is happy with how Madi (and her shunt) are doing and doesn't need to see her for another year!  He feels her seizure was most likely caused from the MMR vaccine and does not recommend further testing at this point, unless the seizures continue.  I am also happy that he has a special place in his heart for Ramya and is eager for her to come home.  His daughter has two adopted boys from Korea, and he is one proud grandpa!

Madi wasn't too fond of the urodynamics test to see if she still has renal reflux.  She actually did great during the test, but walking in the room and seeing that big machine just did her in.  Poor baby.  She wasn't fond of the wait for that test either.  Lukcily Child Life came with an iPad in tow and she lit up.  She layed completely still for the entire test while she watched Mickey Mouse Clubhouse.  I've decided iPads are the BEST!  I'd love to get one some day!  It would sure make our appointments go smoother!

Today we saw the urologist and we discussed Madi's urodynamic test results.  Madi still has grade 5 renal reflux on the left hand side, which I already knew (I saw it on the screen during the test).  I'm bummed about it, but it is what it is.  He isn't ready to try and correct it yet and wants to watch it a bit longer before doing anything.  He did say her bladder was holding a good amount of liquid and he was very pleased with that.  Yeah!  The wait for urology was actually pretty short, thankfully.  Child life also came back with the iPad to entertain Madi, which made her VERY happy!

We seriously need one of those things!!

I've tried to have lots of fun with the kiddos when we aren't at our appointments.  We've seen movies, gone out to yogurt, gone on treasure hunts, finger painted with pudding, and lots of fun things like that; it seems to help.

(such a goofy little guy)

In other news, Kyla, the ntee we have staying with us for a bit, officially graduated highschool... YEAH!  We are VERY proud!!











We are still waiting to hear back on our NOC and hope to have it soon.  We have our little gifts for Ramya all packed and ready to go.  Once we get our NOC, we can send them off to her.  I can't wait for her to know we are here waiting for her!  My awesome friend, Kimberly, gave me a code for a free shutterfly book, so I made one for her all about our family with lots of pictures in it.  We also are sending some books on adoption, a book about plane flights, some knee pads, leg warmers (her poor knees were so sad looking :(.  Hopefully these will help!) a stuffed animal, a little blanket, and I think that's it for now... Oh, and a photo album.  We only have a set amount of space to send things in, so we have to limit what we send.  There is one thing I know for sure...

That's all for now!  Stay tuned for photos of Madi's new up-ups (HKFOs) next week, and please keep praying for that NOC to go through.

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!

Things are looking good!

Last week we had an appointment with Dr. Moss at Phoenix Children's Hospital.  They did an MRI of Madi's brain so they could see if her shunt was still correctly placed.  Everything still looks good, which was really a relief.  The fluid is being taken more-so on the side that the shunt is on and less on the other side.  It is not causing any pressure to her brain, though, so Dr. Moss is not worried.  I did inform Dr. Moss that we would be moving down the street from him so that any time we are worried, we can just bring Madi by so he can check her out :).  We are almost to the lowest point for the possibility of infection, which was very reassuring to hear.  I had been having nightmares about her shunt failing.  The first nightmare I had was that they had to draw fluid from her shunt and it was a dark brown color.  The second nightmare was that every time I tipped her head, I could hear water sloshing around.  We know that many people have Madi in their prayers and that means so much to us.  We are so blessed to be surrounded with people who love us and care for us!

Back in the saddle, or is that hospital, again...

So here we are again.  Definitely not the place I wanted to be.  Madilynn's soft spot kept getting full and then empty, full an then empty again.  David and I were watching it closely and then today she started throwing up.  I brought her down to Phoenix Children's Hospital and though her car scan and x-rays look good, Dr. Moss tested the shunt externally and feels that it is not draining correctly and may be beginning to get clogged.  She has surgery scheduled for tomorrow morning to try and determine what the problem is and fix it.  She goes NPO (nothing by mouth) a 3 am this morning.  Right now it's 10:09 pm and they are trying (quite unsuccessfully) to start an IV for fluids and (starting tomorrow after the surgery) antibiotics.  We've been here since about 5 pm so it's been quite a day!  Please pray that they can quickly and efficiently solve her shunt problems and that they don't reintroduce infection.  Please be praying for Conner and his time away from mommy and for me as I am struggling with all of this a bit.  I know God has a reason for all of this, but I really wish I knew it!  The important thing is that Madi is happy, healthy, and safe, and sometimes it's hard to keep that in mind.  

She's off to surgery

So far the culture has not grown, so the chances of infection are slim.  The plan right now is to go in and try to clear this shunt.  They are not sure where it is clogged or malfunctioning so they will go back in and take each part apart to diagnose and correct the problem.  The entire procedure takes about 1-2 hours.  She has been NPO (nothing by mouth) since 4 am, so my poor baby is starving!  The fluid in her brain is also quite built up, so I'm sure she has a headache.  They will let her eat again after the procedure and the fluid will be able to drain correctly, so I am sure she will be a much happier little gal!  If the cultures continue to stay negative and the shunt clears correctly, we will be able to go home tomorrow, which would be awesome!  We are praying that the procedure goes smoothly and she comes through it ok, that no new infection is introduced during the procedure, and that the new parts function correctly so that we do not need any more shunt revisions for a very, very long time, if at all.  Dr. Moss, Madi's neurosurgeon, is on vacation, so Dr. Shaffron, his associate, will be doing the surgery.  He is also very well known so I know she is in good hands.  This will be her 5th brain surgery in her 7 weeks of life.  She had the initial shunt placement, two external shunts, her new internal shunt, and then this revision.  I'd say she deserves a break from all these surgeries.  She is one tough little girl!

(This is a picture of Madi sleeping on a pillow in my lap while she waits for surgery)