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!

Madi's Preschool Pictures

Madi goes to Stepping Stones Preschool and loves it!  This is her second, and final, year.  Next year she will be homeschooling with momma full time :).  Here are her school pictures from this year, I love them!

 

The Vepreks are Headed to Boston

It's official!  We have a date for a second opinion in Boston and I think we have everything lined up.

The big day is May 14th!  Please pray all of the medical records and everything they need get there in time.

We had planned for just Madi and I to go, but it just so turns out that David's parents are going to be in Boston at the exact same time (well, except they are staying for two weeks) to visit with David's brother and sister-in-law.  And it also just so happens that David's brother works at a hotel he can get us a room at that is right next to a train station, and the train goes right to the children's hospital.

I was not wanting to spend the airfare to get us all there, but David is really wanting to go and visit with his brother and sister-in-law, so we are going to go ahead and all go.  The kids are super excited about riding on an airplane, as neither Conner or Madi were old enough to remember the last time they were on one.  David is really excited about seeing somewhere new.  I am super excited to get a second opinion on Madi's surgery.  So basically we are all pretty excited over here!

I'll keep you all updated on the specifics as we get closer to the travel date.  Thank you for your prayers, I know they are working.  We were told, multiple times, that they would not book us a date until they both received and reviewed all of Madi's medical records.  Yet, here we are with an appointment, even though none of that has happened yet.  On top of that, David is getting a bonus, so we will have the money to go.  Praise God!

 

Conner's Keyboard Performance

Conner had a piano performance last week, and did a great job!  Instead of a live performance, the kids got to make a video with their music playing in the background.  Conner wanted to set off a volcano in his video, so we did that at home, and his teacher helped him with the rest.  He's only been taking classes since February, so this is new to him, but he's loving it!  Here's his performance...

 

 

Life Keeps On Rollin'

The last few weeks have been busy, to say the least.  There have been extra appointments and phone calls as we work through trying to decide the best path to take for Madi's upcoming surgery.  We are working hard on getting to Boston to get a second opinion from a neurosurgeon there.  Before they will make our appointment, though, they want to get all of Madi's medical records.  I have pre-registered Madi and have also returned all of the forms they needed to be able to request the records.  I am praying that they can get them quickly.  The doctor we are trying to see goes out of the country in mid May and is also taking the last week of April off, so it's going to be cutting it very close.  Please join me in praying that we can get an appointment before Madi needs to go in for surgery here. 

This weekend was busy, but a lot of fun, and I am thankful for that!  Thursday at homeschool co-op we had a special guest... Jungle Jill!  The kids really loved seeing all of the animals.  It was great!

 

 

Friday we had friends over for dinner and we made a few treats that we can eat on our cleanse/diet.  It's been stressful the past few weeks and not being able to medicate myself with starbucks and chocolate has been hard!  It's actually been really good for me, though, because I munch a lot when I am feeling stressed and use eating as a coping mechanism.  I feel so much better and have a ton more energy since I've been eating a cleaner diet.  I feel happier and more in control of my eating as well.  I also have some weight I've been yo-yo-ing back and forth with since I had Madi, and I am really hoping to get it off and keep it off this time. 

Yesterday we had errands to catch up on.  David needed new softball cleats, Madi's seizure medication needed to be refilled, and we needed to catch up on grocery shopping.  I hadn't been to Sprouts in about 2 weeks, so I had a big trip to make.  While we were there, an employee told David that all the employees love when we come to Sprouts.  They said our kids are always so well behaved and happy, and Madi always has the biggest smile.  It's funny because if I haven't been in a week or two, I get multiple comments from the workers about how they have missed us and haven't seen us in a while.  I'm glad to hear they think the kids are well behaved, though, because I'm usually shopping alone with them and sometimes I feel like I'm wrangling squirrels :). 

Saturday night we went to my friend's wedding.  The kiddos looked adorable and had a lot of fun. It was Ramya and Madi's first wedding, as well as the first wedding Conner remembers.  It was very kid-friendly, and we always appreciate that!

 

 

 

Of course, whenever my kiddos hear music, they dance!  They love to dance!

 



Just to be totally real, though, let me tell you a fun story about the wedding.  I don't want you thinking our life is TOO perfect ;).  David came to the ceremony but then had to leave for his softball game.  His team was already down players and he didn't want them to have to forfeit.  I had the three kiddos by myself at the reception.  It was time to get food so I had to come up with a plan for getting 3 kids and 4 plates of food to the table by myself.  I decided that each child should hold their plate and I would hold mine while pushing the girls.  The dinner was not very diet friendly for my littles, as most everything had gluten and dairy, so the only thing we could really eat was the chicken.  I put a few pieces on each kid's plate and then asked them to carry them.  Sweet Madi (you know, that adorable little girl who was complemented for her great listening and smile earlier in the day) decided she wanted noodles.  Instead of asking me, though, she decided to just put her plate on her head and pass it back to me, without using her words and actually telling me her plan.  She ended up dumping her chicken, as well as the sauce on it, in her hair.  In my effort to catch her chicken, I dumped mine on the ground.  As I dug chicken out of her hair, I told her that her behavior was not ok and that I was not happy with her choice.  She got upset and decided to go on strike and not move her wheelchair, or let me move it.  When I told her that we were holding up the line and she needed to listen, she broke out in her classic hysterical crying.  Madi doesn't really have a medium, so she is either incredibly happy, or incredibly upset.  Thankfully she is usually very happy, but she has her moments, just like we all do.  I shuffled the kids back to the table, put the food down (thankfully someone brought us new plates of food), and bent down to hug her and hold her because she was still sad.  Because she had been crying, though, she did what she usually does when she cries; she puked.... all over her dress and my feet.  I cleaned her off the best I could, wiped off my feet and shoes, and we quickly ate dinner.  A little girl asked me why Madi puked, and I told her that Madi just throws up easily and that puke was just part of life for us.  The look on her parents face was quite classic ;).  After that we decided to head home so that we could all clean up , Madi could have a bath, and we could head to bed. The kids were looking forward to cake, though they couldn't really have it anyhow because it wasn't gluten, dairy, and egg free, so I stopped on the way home and got them a little treat.  That made them very happy!

Today was another busy day, but it was a lot of fun.  Our Church, Imago Dei, was having a community snow day.  After Church, there was 25 tons of snow to play in.  The kids had a BLAST!!  We threw snowballs, went in the jump house, ate, got our faces painted, and went sledding down a snow slide. 

 

 

 

Even the girls went down the snow slide and loved it.  I helped them at the top and my mom helped them at the bottom.  They were VERY proud of themselves!  

 

 

(both the girls flop off at the end, but both were happy and laughing and safe, so don't worry :))

 

 

 

 

 

 

 

There was music too, so of course, there was more dancing!

 

 

 

After our Church event we trekked downtown for an Arizona Rattlers game with Hopekids.  This was the kid's first football game, and they all loved it!  Conner said he wants to go back every week :).  Just to keep it real, I will share that taking the girls potty in the public restroom did lead to me getting slightly covered in pee; twice.  Luckily I keep a melaluca spray in our bag, though, so I can disinfect any messes I need to.   I was pretty quickly and easily cleaned up.  After the game they let us all down on the field so that we could get autographs and the kids really had a blast with that.  Some of the players were really sweet and took time to talk with the kids. They also had a kids area with a fun jungle gym and video games.  They were very accommodating and the kids had a blast.   The workers even encouraged me to put the girls on the zip line.  Madi was wanting to ride it, so I held her and ran across the netting so I could hold on to her a little in case she slipped.  She had a blast! 

 

 

 

 



I am about ready to call it a night.  I picked up the house quite a bit as it was so very messy.  Now it's time to tackle the dishes, and then, off to sleep.  Amongst the other things we have had going on, we've also been working with the district to get the girls evaluated.  Arizona has a very cool program for kiddos with special needs that are homeschooled called an ESA.  Basically you can get any extra money that the district would get for servicing your child and can use it towards therapies and curriculum.  I'm hoping to get the girls qualified so that they can start a therapeutic riding program.  It can also go towards the out-of-pocket cost we have for Ramya's physical therapy every week.  As an added bonus, any money we don't spend can be saved for college for them.  In order for them to qualify, they have to get MET reports done through our local district.  Madi should be able to qualify after that, as she is 5 years old, but Ramya will need 100 days of pubic schooling next year since she is over 5.  Since I can't actually put her in a public school (let me rephrase that... I don't think it's a good idea to put her in a public school), I am going to sign her up for K-12 online, or another similar online school, so that she can do public school from home.  I may sign Madi up as well, just to keep them on the same page and make next year's homeschooling year run smoother.  Tomorrow morning I have to get Ramya to our neighborhood school at 7:15 am for a meeting, as well as a hearing/vision test.  We are not usually up until about 7:30 or 8:00, so I am not looking forward to being there so early!  If anyone wants to show up at my door with an iced coffee, black of course so I don't mess up my cleanse, I won't say no ;). 

As always, thank you for following our journey and for praying for us!  Your prayers and support make a world of difference! 

Saying Good-bye is Hard!

A few weeks ago we found out Dr. Segal, the girl's orthopedic surgeon, is leaving to practice in another state.  I was really, really bummed, as he's seen Madi since birth, but I scheduled a last appointment with him to try and get our ducks in a row.  We were supposed to get in with him next week, and then he was going to move in four months.  It was important that I talked to him because he wants to do a heel cord release on Madi during her back detethering surgery, so we were needing to discuss that, but also trying to appeal insurance to try and get Madi's Rifton Mobile Stander covered, so he was going to do a peer-to-peer for me and try to get it covered.  Today I call to ask his nurse a question, only to find out he's gone.  Just... gone.  He left four months early.  I am  SO bummed.  Dr. Segal had a passion for kiddos with spina bifida.  He came to all the local spina bifida association events, speaks at the yearly spina bifida conference, and was always involved.  Instead of looking at my girl's diagnosis and level, he'd look at them for who they are.  This is something that so many doctors do not do, but it is so very important.  He was pro-walking, and was always supportive when we needed new leg braces or new equipment.  I am just heartbroken to have to see someone new, especially because I now have no idea who to choose for Madi's heel cord release surgery, and this person will be totally new to us.  Sigh.  Please be praying as we work through trying to find a new orthopedic surgeon, especially one that is pro-walking and will advocate for the girls.  I am hopeful that I have found one we will like, so I am going to try to get in to them ASAP.  I know God's got this, and He has someone amazing in mind for us, so please pray we find this person quickly (hopefully the person I have picked out will be wonderful!!), so we can have peace of mind about her upcoming surgery.  Thank you! 

A Give-Away... The No-Cry Sleep Solution for Toddlers and Preschoolers

I've been going through my books and found a book I LOVE but no longer use.   The No Cry Sleep Solution Series (the first book is for infants and toddlers and the second book is for toddlers and preschoolers) was a life-saver in our house.  I used the tips to help my little sleep longer stretches at night, without tears from either of us.  I have 1 copy of The No Cry Sleep Solution for Toddlers and Preschoolers to give away to someone who can use it.  Just use the rafflecopter below to enter and a winner will be picked on Sunday.  I will even mail you the book for free, so there is no cost at all to enter. 

 

a Rafflecopter giveaway

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! 

Ramya Turns 7!

Tonight was Ramya's 7th birthday party, and we had so much fun!  She picked a Hello Kitty theme, and really loved her cake and decorations.  It was a small but joyful celebration.  Now that the kids are older I have been letting them pick who they want to invite to their parties (I used to just invite all of our friends).   Ramya picked 3 kids, all from 2 families, so we had all of mine and David's family (which is a lot right there!), as well as two other families.  It felt odd not having all of our friends there, as we are blessed with so many amazing friends and are used to celebrating with them, but it was also nice having a small party, and Ramya was thrilled.  I think Ramya did better too, and wasn't overwhelmed like she has been in the past.  This week was also a super crazy one, and party planning was just, well, hard!  Monday was Madi's sedated MRI.  We left at 8 am and made it home at just about 4 pm.  Tuesday was homeschooling, physical therapy, a dentist appointment for David, and church group.  Wednesday was preschool, homeschooling, occupational therapy, and a GI appointment downtown.  Thursday was homeschooling, a dentist appointment for me, dinner at a friend's house who is moving out of town, and grocery shopping.  Friday was preschool again, homeschooling, visiting with a friend who is in from out of town, and then more grocery shopping, as well as making a gluten, dairy, egg free cake for Conner and Madi (I ordered Ramya's cake and it came out adorable!!!), making the food for the party, and going out to Indian food to celebrate Ramya's birthday, per her request.  I stayed up until about 1:30 am to finish the house and food, so that today could be a fun day.  We finished picking up the back yard and then headed off to see the Lego movie.  Conner, Madi, Ramya, and I had watched it with Hope Kids, but David hadn't gotten to see it yet.  He loved it!  Then tonight was the party, and we really enjoyed ourselves!  Ramya was just glowing and was so excited.  It was very sweet!  Ramya had requested hotdogs to eat, so we had brats, hotdogs, red pepper sausages, toppings for everything, coleslaw, pasta salad, quinoa salad, asparagus, baked beans, watermelon, chips and dip, and chips and salsa, and made it an All-American feast.  Here are some pictures from Ramya's special day

The centerpieces

 



 

Ramya's adorable cake from Cakes She Makes.  It was vanilla, just like she wanted!

 

Instead of goody-bags for the kids, I bought bags of cotton candy from the dollar store.  They were a hit!

 

I found this cute dress for Ramya on Amazon

 

Every birthday girl needs a crown!

 

Pinning the bow on Hello Kitty

 

David played too.  At first he wanted to be spun 32 times (I was spinning one spin for each year old someone was), but at 12, he called it quits :)

 

So many fun gifts!

 

Blowing out the candles....

 

Of course, no night goes by without a little silliness!