Home from Madi's Shunt Revision

For those of you who are friends with us on Facebook, you probably saw that Madi was in the hospital for a shunt revision.  We are happy to say that we are home and she is doing well!

Last week Madi had a headache for about 3 days in a row.  I would give her motrin (when she would let me ;)) and it seemed to come and go, but was mostly consistent over those days.  We were planning on going to my parent's cabin in Flagstaff on Friday and I didn't want to take her up if she had a problem going on so I put a call in to her neurosurgeon.  After waiting a bit I decided it was probably best to just head down so I put her in the car and started driving.  When we were almost to Phoenix Children's Hospital (PCH) the neurosurgeon's assistant called me back and told me that it likely wasn't shunt if the headache was coming and going and there were no other symptoms.  They said to go ahead and go to Flag and just watch her very carefully and take her to the Flagstaff hospital and call them if she progressed.  I contemplated taking her in anyway but decided to just keep a close eye on her.  She did pretty well the rest of the day but she had a rough night that night and was waking up a lot so I had her cuddling in bed with me.  When she woke up I noticed her left eye was turning in.  I held up one finger and asked her how many fingers I was holding up and she said two.  I knew what that meant so off to the ER in Flagstaff we went.  The doctor in the ER called PCH and they said it would be best for us to get there.  The doctor contemplated if he should helicopter us over or have us drive, and decided since she was stable we should just leave Flag and drive straight there.  Madi had thrown up a few times by then but was still feeling still and was in pretty good spirits considering. 

 

 

It took us a few hours to get to PCH but Madi did well in the car.  She threw up once and was confused about seeing double but was a trooper.  When we got to PCH we got settled in to the ER.  They got Madi an eye patch so that she could stop seeing double and she was super excited about that.  They ordered a one bang MRI and shunt series and we got in pretty quickly.  They let me go in the MRI machine with her and she did awesome.  After the MRI we were taking x-rays and David told me that they had already reviewed her MRI and it was abnormal and her shunt was indeed failing so they were taking us straight to surgery and he had already signed the release paperwork.  Dr. Shafron, our neurosurgeon, wasn't on that day, so Dr. Adleson met us at our ER room and walked us over to pre-op. 

 

 

 

The kiddos and David waited in the waiting room and I went in to talk with the anesthesiologist and do the pre-op stuff.  He agreed to let me go back and sing to her while she fell asleep, which I really appreciated.  She had fallen asleep during our walk over and woke up confused when the mask was going on her so I was very thankful I could be there to tell her what was happening and sing to her.  They were able to get the IV in her foot after she was already asleep, so that was awesome too!  After surgery prep the surgery itself only took about an hour.  When Dr. Adelson got in there he discovered that the shunt itself was functioning well.  The tubing, however, had disconnected itself.  Basically the shunt was pulling the cerebral spinal fluid through it but it was just accumulating underneath it instead of going down to her abdomen to get reabsorbed.  He left the top part of her shunt in tact, since he had tested it and it was functioning well, and only had to change the tubing and re-connect it.  This meant she only needed one incision; yeah!!  He also was able to go in through her old shunt scar.

 

During surgery I had missed a few calls from the doctor in Flagstaff so while I was waiting to see Madi I called the doctor back.  He said he was worried about Madi and was afraid he made the wrong choice by not flighting her to PCH to transfer her.  I assured him she had done ok in the car and that she was safely through surgery.

 

After surgery they didn't let me back right away, which I wasn't very happy about.  They had wanted to make sure she woke up ok first since she was intubated.  When the woke her up, though, she had woken up kicking and screaming, like I had told them she would (she doesn't wake up well from anesthesia), and was trying to rip out her IV, had already popped a few of the staples holding in the guaze on her head, and was trying to hit nurses so they had to sedate her quickly.  They let me back and when she woke up again, she was doing the same things, so they got an IV med started to keep her calmer and partially sedated and I helped keep her hands away from her surgery site and IV while we waited for the meds to kick in.  Because she was so cranky and trying to push me away I kissed her hands and that was enough to keep her pushing me away and keep her hands away from anything important.  The meds kicked in  and she was able to rest.  Once she woke up she was doing much better so they were able to cut the sedation amount in half and then not too long after they were able to turn it off all together.  She also finally got water which made her very happy.  We watched TV for a bit and then tried to sleep.  They had her neuro checks set for hourly, though, so we didn't get much sleep (especially me since they had to wake me up in between her hour checks to ask me questions).  Her nurse was really sweet though and tried to let her sleep as much as he could.  At 2 am she woke up really hungry and wanting gluten-free pizza.  That wasn't possible so her nurse offered to go down to the vending machine and get snacks for her.  We decided that if he sat with Madi I would head down since I knew what was ok for her to eat with her food allergies.  I found a ham sandwich and took off the bread and cheese and she happily ate the ham.  She also had a bite of granola bar as well and watched a little TV.  She slept on and off a little more after that in between her neuro checks but was up for good at 5:30.  We watched some movies and vegged and then at 7 am I was able to order her some gluten-free pasta and she was pretty darn happy about that.  My dad came and sat with her around 8:30 so I could grab coffee and oatmeal and I was pretty darn happy about that.  Next David and the kiddos came to visit and she was really happy to see them.  They had left after her surgery because she was so upset and it was upsetting Conner and Ramya.  We  had felt it was best for them to head home, but she sure missed them and told me many times!

 

 

 

We did another one bang MRI and it showed that her ventricles had indeed decreased so they said as long as I was comfortable with it, Madi could go home.  Her shunt site was sore, of course, but other than that she was doing great so we agreed to be discharged.  She has complained a few times about her shunt site hurting but other than that she really is doing wonderfully.  Her eye is still turned in and she is still seeing double but it's looking much better.  They are hopeful that it will correct itself, but if not, we will see a specialist about it.  Please join us in praying that it goes back to normal on it's on soon and that it doesn't cause any long-term issues.  Please also join us in praying that her shunt stays happy and infection free.  She got 3 IV dosages of antibiotics in the hospital so hopefully that will keep her from developing an infection.  Since her shunt was infected once as a baby though I always worry about it.  Please also be praying that she rests well tonight and can catch up on sleep. 

 

Thank you so much for praying for our sweet girl and for all of the calls and texts to check in on her.  We appreciate you!  I'm so thankful she only needed a partial revision and is already feeling better!  It's a miracle!

 

Oh, and a big "thank you" to our friend, Annette, who brought us a yummy dinner so we could relax tonight.  It was VERY much appreciated!

 

 



Neuro, Uro, and Thankful for a Crappy Day

Whew, what a week!

I know I say that often, but it just seems to describe this week so well.

Tuesday we had an appointment with our neurosurgeon, Dr. Shafron, as a follow up from Madi's last seizure.  The ER had mentioned Madi's right ventricles were slightly larger.  I told them that she is shunted on the left so they always are, but they wanted me to follow up with neuro and just make sure there were no changes.  Dr. Shafron compared the images from the ER to her last images and her ventricle size looked identical.  Yeah for a well-functioning shunt!  I remember when she was tiny and she was flying through shunts.  I felt like that would be our life forever.  It's now been over 6 years with this same shunt!  6 years!!!!!

Thursday the girls had appointments for renal ultrasounds and a follow-up with our urologist, Dr. Zuniga.  They had a really hard time finding Madi's left kidney, and they aren't exactly sure they even found it.  Madi has a super kidney (her right one) that performs as well as 2 kidneys.  Her left kidney doesn't really work at all, though.  They think it may be shrinking/shriveling, which they said is typical.  Her right kidney continues to look great, though, so we are thankful for that.  Her bladder is also looking good.  Ramya's tests all came back great as well, so that was good news!  We eventually need to consider surgery for the girls to help with urinary and bowel things, but I told the doctor I would prefer to wait until after our adoption goes through and we re-settle as a family since both girls are doing well (they just can't get out of diapers/pull-ups at this point, which I know eventually they will want to do).  He agreed that was a good plan, so for now we wait.  He also answered a few "boy" questions I had about Conner and put my mind at ease, which was very much appreciated.

Now on to our crappy day that I am actually quite thankful for....

Today we had homeschool co-op and we had a blast like always.  Conner takes Mini-Mozart, which is an acting type class for kids.  He also takes What's Bugging You, which is a class that teaches them about, well, you guessed it, bugs.  He really loves both!  I teach the class the girls are in and usually pick a topic to learn about and then we have activity centers to work through related to the topic.  We also have music and PE class during that time.  We learned about polar animals and did a lot of fun activities.  The girls really enjoyed it.  After we left and got to the car is when the fun started.  Sweet Madi unlocked her wheels (she's very independent and knows how to lock and unlock them and usually uses them appropriately), unstrapped herself, and reached over to grab something.  That's when her wheelchair went flying backwards in to the parking lot and she went flying forwards, belly first, on to the asphalt.  She was scared but somehow was completely unscathed.  Not even a scratch!  There were many tears shed, but she told me she was crying because she was scared, not because she was hurt.  Thank God!  I'm so glad she wasn't hurt.  We talked about why we need to make a different choice next time and I know she learned a good lesson.

Next we had an appointment with our naturopathic doctor for a blood draw so we started to head that way.  Before I get to that part, though, here's a little back-story.....

Unfortunately this blood draw had been a really frustrating situation for all of us.  A few weeks ago the neurologist asked me to get a draw for her to check her keppra levels.  Since we had to do the draw anyhow and she wasn't due for any other labs, we decided to check anything we could and he also included folate levels, b 12, amino acids, thyroid, homocystine, and a few more.  I made an appointment at our pediatrician's office since they do draws all the time and I figured they would be the best with kids.  They did a great job on the draw and got her on the first try and were done quickly.  Unfortunately, though, somehow when they were transferring the neurologist's orders over to their paperwork, they left off the most important test... her keppra levels.  When I got the call that her results were ready I sent David by to get them.  When he got home I realized that the level was missing but the office was already closed and I couldn't call.  I called first thing Monday and after many conversations with our neurologist's nurse, Sonora Quest Labs, and our pediatrician's office, we realized what the error was but it was too late to do another test from that sample.  I had the neurologist write up another test form for us, including white blood cell count this time as well, and made an appointment with our naturopathic doctor this time for the draw so that I could also get a food allergy panel run at the same time.  I had tried to have it run with the first round of blood tests, but because it was an outside lab they wouldn't do it for me.  I figured we would at least get to kill two birds with one stone.  Now back to my previous story...

On the way to our naturopathic doctor's office we were all getting hungry and decided to stop at Whole Foods for lunch.  It was raining, though, and the traffic wasn't great.  As I was exiting the ramp I almost got rear-ended.  Almost.  I am so, so thankful for that almost in there.  God really protected us!  While we were shopping for our lunch I got a call that our new physical therapist (such a long story there but Tami, our amazing PT, was no longer contracted with our insurance so we had to switch.  We found Kelly after a few months of self-pay appointments with Tami and lots of phone calls.  We've had her a few months and really loved her) was no longer with the company and they had no other therapists for us at this time.  GAH!  It took me so long to find her and she was great with the girls.  We are so so bummed to be losing her, especially so soon.  I texted her to see if we can follow her to her next office but she's not sure at this time where she's headed.  Here's the good news, though.  The last few times Tami had worked with the girls she decided to bill our secondary, fully expecting them to deny her, since she was no longer contracted with them.  Instead, they paid!  We aren't sure if this will last, but for now, we can continue to work with Tami until we find another PT.  Even though we are bummed it's amazing how God has worked out all the details.  I also ran in to two friends at Whole Foods, so that helped soften the blow.  A hug from a friend just goes a long way!

After we got our lunch we headed to the office.  Dr. Vitaro was great with Madi, but unfortunately he couldn't get a draw on the first try and there was just no way she was letting him try again. She was pretty upset.  There were more tears shed.  The doctor felt really bad, and I felt bad that he felt bad.  I had just got done telling him how I was really frustrated at the other office for messing up her labs, but new it was a mistake and was trying not to be upset, and then he couldn't get a draw from her.  It was just a bummer.  I decided to just forget the allergy test for now and make an appointment to go back to the pediatrician's office for the draw since she can be a hard poke and they can get her on the first try.  That appointment is Monday, so I am praying like mad that Madi will do ok during the draw.  She was upset during the last one , which she also thought would be the last one, and I really pray she doesn't have anxiety about the appointment and that it goes smoothly.  Hey, third time's the charm, right??? 

On the way home Ramya apparently still had some gluten-free pizza crust left (that girl can really hold on to food forever!!) and gave it to Madi.  We were on the freeway and I heard her start to choke.  She cleared it quickly (thank God) but she started making her "I'm going to puke" face that she gets any time she gags.  I pulled off the road quickly to give her water and help her but she was fine thankfully.  Again, I am SO thankful for protection for her.  I know I sound like a broken record, but really, I am! 

Whew!!  Once we got home the rest of the evening went well.  We went out to dinner with David's grandparents to celebrate his grandfather's birthday and enjoyed spending time with them.  After the kiddos went to bed David and I finished watching a movie together and it was nice to just relax.  I'm thankful that tomorrow is a new day and I'm looking forward to Madi and Ramya's dance class and then working a bit in our garden.  We also have a family movie and some relaxing time planned. 

Though this week was busy with appointments, therapy, and homeschool, we had lots of fun times in between that I am thankful for.  I think these pictures speak for themselves and just how blessed we are...

(Relaxing and eating lunch after our urology appointment Thursday.  It was a BEAUTIFUL day out!)

 

 

Working on our garden...

 

 

Dressing up for silly photos at the Ice Cream Social at Madi's old preschool, Stepping Stones...

 

 

 

 

Relaxing foot soaks in momma's foot tub.  Madi said she couldn't feel it but was pretty sure it felt amazing.  She cracks me up!  She did also put her hands in it so she could feel the warm bubbles.

 

 

 

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!

Round 3.... The BIG News From Our Third Opinion

Well, today went a totally different way than I expected, but in a good way! 

Dr. Shafron remembered us from Madi's previous surgeries that he did (he did a few of her shunt surgeries when he and Dr. Moss were both still out of Phoenix Children's Hospital and Dr. Moss, our regular neurosurgeon, was gone.  He didn't actually recognize Madi, of course, because she was only about a month old when he operated on her, but he recognized her name.  He said he doesn't always recognize or remember names, but that for some reason ours stood out to him.

Dr. Shafron reviewed all of Madi's medical x-rays and MRIs over the last few years.  He said that when he compared the MRI scan from when she was two to the MRI we just did a few months ago, her tethering was actually stable and he didn't see any significant changes.  He also said her spine does not have the classic look of one with significant scoliosis.  He could see both side of the spine, and the nerves were straight and not twisted around the spine at all.  He said her ventricle size had very slightly increased since the last scan, but that it is very minor and he isn't too concerned since she is showing no signs of shunt malfunction.

I asked his take on surgery, as well as the approach he would recommend.  He feels that there is no rush to do surgery, and in fact, he's not even sure she warrants a surgery.  He said he feels like we need to get further x-rays to study her scoliosis.  He said that we really need to figure out what degree she is, try to figure out if it's stable or if it is worsening, and then see if the orthopedic surgeon feels that a de-tethering surgery would really help her.  He said they usually watch the spine carefully by using the same test and watch for change.  He said since we don't have a baseline, we don't really even know if there is a change.  He also said there are multiple things, like her syrinx or her Chiari II malformation, that could be causing the scoliosis as well.  He basically said that he thinks the orthopedic surgeon would be the one to determine if she needs surgery or not, because he's not convinced she does.  He also does not recommend an aggressive surgery when the time comes to de-tether her.  He said that he only uses an aggressive surgery with a child that has had multiple de-tethering surgeries before and that has no movement at all in the legs.  Because it would be Madi's first, and because she does have some movement and feeling in the legs and toes that you wouldn't expect for her level, he said that he would not want to do anything aggressive or permanent.  That was music to my ears!!

Right now we have decided to put off Madi's surgery, get back in with Dr. Goggins, our orthopedic surgeon, and get some better, more accurate pictures of her spine, that include standing in her HKFOs with hips level, laying, and side views.  Next we will determine where her spine really is at.  At that point we will decide if he thinks she warrants surgery, or if watching her and continuing to carefully monitor her would be a better approach.  Our appointment with Dr. Goggins is June 12th, so I hope to have so more information then. 

Thanks so much for praying for our family.  Please continue to pray for answers as we decide if she needs surgery or not, and also pray for clear x-ray photos so that we can get an accurate view of her spine and her scoliosis.  I am so thankful, though, to have a good plan of action and to be able to have Dr. Shafron do the surgery so that we can have a conservative surgery, and still be in Phoenix.  I am so thankful for the answers we got today!!
 

A Quick Update from Boston

I am typing on my phone, so this will likely be full of errors and brief ;).

Today we went to the spina bifida clinic in Boston.  Our primary purpose was to see Dr. Warf, an amazing neurosurgeon they have here, but we also saw the orthopedic surgeon and urologist.  They have a multidisciplinary approach where all of the doctors discuss your child's care with each other, in addition to with the parents.  This is something I believe is so very important, and sadly lacking in our care in Phoenix.

We really liked Dr. Warf and we are glad we came to see him.  We liked the urologist a lot as well, and the orthopedic surgeon was ok.  Not as pro-standing as I like, but he did suggest putting Madi in daytime AFOs to keep her legs stretched out and her heel cord loose, so this is something I will further discuss with our new orthopedic surgeon, Dr. Goggins.  It's something I have been wondering about, and I am glad to have an opinion about it.  The urologist and neurosurgeon feel that Madi's vesicostomy, while it did solve her problems in the short term, was not what she needed.  He said she really needed the de-tethering surgery last year, and that likely would have solve her bladder issues.  Now that a year has gone by, they aren't sure if the de-tethering surgery will help her bladder at all.  That is a big diss appointment, but we will be praying big and that the de-tethering surgery does reverse her bladder issues (her bladder was great for years and then became spastic).  The fact that she only has one kidney that works also makes her care a little more complex.

Dr. Warf feels that Madis tethering is very by-the-book and warrants a traditional, not a more intensive , surgery.  He said that he has yet to read any research that shows that an intensive surgery leads to a decrease in re-tethering rates or long-term impact on the spine.

So what's the plan?  Well, at this point, we are not sure if we want Dr. Moss, our neurosurgeon, to do the surgery, since he wants to go a more aggressive route.  We also would prefer not to be in Boston for the surgery, since we would be away from home for about 3 weeks or so, and our secondary insurance won't cover out of state surgery.  But, if this is where we need to be, we will absolutely make it work.  Before we decide, we are going to Dr. Shaffron, another neurosurgeon we know and trust in Arizona, to get his opinion.  We may also have him do the surgery, depending on what he says.

Please continue to pray for us as we are still figuring out Madi's surgery and what that will look like, as well as where it will be.  We are very thankful for Dr. Warf's opinion and are so glad we came.  Thank you for keeping us in your thoughts 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

 

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.

I may need an attitude adjustment

Lately I haven't been in the best frame of mind. I am so frustrated with the system and all I want to do is scream and throw something against the wall (though I've yet to do either, so no worries). I previously posted about some money that was supposed to be reimbursed to us that will go toward a playground for Madi. After another round of calls and messages, and no answers or replies of course, Tami put me in touch with someone who advocates for families and helps resolve problems they are having. I finally found out that the paperwork I resubmitted must be lost in the mail because they are still not showing they got it. I am not sure why they could not just tell me that, but at least I finally know. So today I spent about 1 hour getting everything in order again to once again resubmit it. I did not get to finish and could not sleep until it was done and I could once again see the office floor, so I spent another hour and a half or so copying, compiling, organizing, and writing letters. This, of course, is not the only issue we are having. We still do not have her walker, which came in over a month ago and we should already have, but they are having a hard time getting authorization from her secondary insurance. We do not have her wheelchair or bath chair either. I have left multiple messages to see where these items are and when we should expect to get them, and no one has returned my calls. I was dealing with trying to get Conner in speech therapy which meant calling the doctor to get the referrals in the right place, talking to companies, and trying to figure out the cheapest way to get him a hearing test (which involved calls to the hospital, a few offices, and insurance). Then there is Madi's catheters. Don't get me started on that one. Apparently the company we were going through (edgepark) does not take her secondary insurance, only her primary. We found that one out after a lovely bill over $160 for a month worth of caths. The place her secondary referred me to only takes her secondary, not her primary, and the place that company referred me to only takes her primary. Confused yet? So am I. So with one box of caths left, I still have 0 places to get the caths from. I've called her primary insurance, her secondary insurance, and her urologists office, and no one seems to know where we can go. Nice. Then there is the neurosurgeon appointment I've been trying to make for a little over a month. There is always something else they need, someone else they need to talk to, someone else I have to call. Madi is due for a shunt series and CAT scan, but because her neurosurgeon changed offices, we have to start from scratch and it's taking forever. Then you throw in to the mix that Conner just started preschool 2 days a week, which I volunteer at least 2-3 times a month, I started homeschooling the kiddos the other 3 days (nothing big but it still requires prepping and planning), Madi is in therapy 3 times a week, Conner finally got tested to see if he qualifies for speech therapy (he does) and will now be going twice a week, and everything else that goes along with life. Needless to say, having to spend my Friday night dealing with insurance was the icing on the cake.

I am grateful we are getting the refund for part of the medical bills that we paid early this year. When we paid those bills, we were not expecting to get reimbursed. I am thankful they backdated her secondary insurance so these bills would be covered.  I still find myself getting very frustrated, though.  Madi is such an amazing blessing and makes it all worth while, but I really wish all of this extra 'fun' stuff would just disappear. I don't think it's fair that families have to deal with so much junk when they have so much else to do and think about. I know seeing Madi and Conner play on a playground, together, because it fits both their needs, will make it all worth while. I know the freedom and thrill Madi gets from being able to play independently with the other kids, high up in the air where she normally cannot get, will make me forget this mess in a second. I know all of this, but I still wish I got to spend my time on other things. I'd like to use that pedicure gift certificate David got me for Christmas in 2008 and I'd like to use the cooking class giftcard he got me too. I would like to wake up refreshed in the morning. I would like to spend my time with my family, instead of on the phone. It is times like these, though, that I remind myself that God tells us his presence is with us and He will give us rest.  I know it will all work out in the end and it will be worth the hassle.  When I look at Madi's sweet face I remind myself of all I have to be thankful for. Taking care of insurance may not be fun, but it is part of taking care of Madi, and I still would not trade it for the world.

Such great news today!!

Though it is too easy to say when things are going well, GOD IS GOOD! All the time! We went for a routine MRI today, as well as a routine neurosurgeon appointment. The MRI went smoothly. They allowed me to get in the MRI machine with Madi so that they did not have to sedate her. I rubber her little soft face and sang to her while they did what the call a "big bang MRI", which only takes about 5 minutes. It was a bit eery feeling to be crammed in such a small, enclosed space, but I was thankful to be there! Madi did great because she knew momma was right there with her the whole time. She wasn't a huge fan of the ear plugs or the fact that she could not move her arms, but she really did great! I got a little nervous for the appointment because Mary, Dr. Moss's nurse practitioner said she would look at the MRI and be back, but kept not coming back. I was starting to get worried, especially considering we are supposed to be on a plate today to head to disneyland. She said there is more fluid in the left side, just like there was before, but things looked good. The reason it took so long is because she called Dr. Shaffron and had him compare her old MRI to her current one. Things looked pretty much exactly the same. THANK YOU GOD!! Then she said the most amazing thing..... we will see you in 6 months! Now, for some people, 6 months might not sound like a big thing, but to us it is HUGE. We had a very rough start with shunt problems and within the first 2 months had spent about 1 month in the hospital. Those were some very rough times. For now, things look great, and I couldn't be more thankful. We're taking it one day at a time.

Well, here we are again

Just as I feared, we are back in the hospital. At some point, Madi's shunt had stopped functioning correctly.  It started about 4 or 5 days ago.  Madi wanted to eat constantly and would only take a small 45 minute nap before wanting to eat again.  Considering that she is exclusively breastfed, let's just say I was hurting a bit!  I took her in to the pediatrician who said it was most likely a growth spurt and not to worry.  I also called the neurosurgeon who said it was normal for babies to act like that after surgery because they are trying to heal, which takes a lot of calories.  She continued to want to eat constantly, but her fontinel (soft spot) felt great, she had no fever, and she was reletively happy so I continued to monitor her but thought everything was ok.  Last night I started noticing her fontinel felt firmer.  She slept well and still had a great appetite but throughout the course of the night it started feeling more and more full.  This morning I knew that something was off.  I tried to call her neurosurgeon but the office was closed for the holiday.  After that I called her pediatrician and left a message for the nurse on call.  The nurse talked to me, the doctor on call, and then instructed me to take Madi in to the Children's Hospital.  As soon as we got here we were brought back to a room in the ER.  They ordered a cat-scan and some x-rays but couldn't find anything wrong.  Next they decided to tap her shunt to see if she has an infection.  The initial gram stain came back negative but we have to wait 24 hours to make sure that nothing grows in the culture.  If it comes back that she has an infection they will take out her internal shunt, put in an external shunt, start antibiotics, and we will be here for another 2- 2 1/2 weeks.  If there is no infection then they will go in and see what is clogging up the shunt.  That would mean we are here for about two or three days.  Either way, Madi will need yet another surgery and goes NPO (nothing by mouth) at 4 am.  I am praying that her shunt is not infected again.  As of right now, Madi and I have spent 50% of her life in the hospital and it's just not much fun.  I know that God has a plan and there is a reason why we are here, but today is just a depressing day.  We should know more tomorrow and I will keep everyone updated.  We would greatly appreciate your prayers!