Madi's New Wheelchair

After lots of back-and-forth with insurance, I am happy to share that Madi got her new wheelchair today.  She got her first at about 22 months old, her second a few years later, and this is her third chair.  She loves it and is very excited about it, especially because it sparkles.  We stuck with the Zippie Zone, the same type of wheelchair she had last time, but added a scoliosis back and foot strap.  We are saving her old wheelchair for our next little gal, so that she has something to use while we get insurance straightened out.  In the meantime, Conner is enjoying playing around with it (and is pretty bummed he can't use it out and about...).  The chair is a bit wider, but Madi is adjusting to it quite well.  Here are a few pictures of her new chair...

I also forgot I was going to need to bring 3 wheelchairs home... Madi's old chair, new chair, and Ramya's chair.  I discovered that I can fit 3 wheelchairs, with some wheels removed, but only 3 kids.  That sure won't work when our adoption goes through, so please join us in prayer that we can find a big enough vehicle to accommodate 4 kids AND 3 wheelchairs that is also affordable.  We may just have to get a big van for the time being and get something accessible later, which means continued lifting and hoisting of chairs, but thankfully that's something we are still able to do.  My dream car is a Mercedes sprinter or the new big Ford van.

(All 3 kiddos are in the middle row.  One wheelchair is sideways in the very back, then the other two in front).

It's been a busy few days with appointments, but it's so worth it!  We are thankful for such awesome care, insurance, and the ability to get equipment for our gals that give them FREEDOM!  

Two Big Reasons to Rejoice Today

We have two big reasons to rejoice today!

To start with, both girls had appointments with Dr. Goggins, our orthopedic surgeon, today.  He wrote a prescription for new HKFOs for Ramya as she has outgrown her current pair (Which is great news because she is finally gaining weight!!  Her eating hasn't improved, but she is looking so much healthier, building muscle, and retaining new information so much better!  Yeah!).  He also said he signed off on both the girls new wheelchairs, which they were both recently fitted for, so we are excited to get those.  The biggest news, though, is that Madi's scoliosis came in at 42 degrees when standing again (laying down with the pressure off her dislocated hip it goes down to 28ish degrees), which means her scoliosis is stable and right now there is no reason to proceed with detethering surgery.  Of course if she started declining neurologically, started losing function, or her scoliosis suddenly changed we would know the surgery was necessary, but for now, she does not need surgery.  We go back in 6 months and we will check Madi's scoliosis again at that time. 

Here is the second great bit of news today...

 

 

I know that is hard to read, but that is our U.S. approval to adopt from India.  That means we are one step closer to being able to bring "D" home!  I'm almost done with our dossier paperwork and then that will go to India for approval there.  We still have a long way to go, but I love that we are one step closer!

 

 

Please be praying for our doctor paperwork to get notarized correctly tomorrow (wait, today?  I'm up past midnight so often I forget it means a new day has begun :)).  We have had some issues getting it completed so far.  Basically, about 2 or 3 months ago we got full physicals and a blood panel done to make sure we were healthy.  Everything looked great so our doctor signed the paperwork needed for Arizona/US approval stating that we are healthy enough to adopt.  For our Dossier India wants a different form, though, that states (give or take), "Upon examination (insert name here) shows no signs or symptoms of hepatitis, tuberculosis, HIV, or any other communicable diseases."  I called our office, twice, to tell them what we needed.  We set an appointment date, found a travel notary, and showed up to get the doctor's signature notarized.  After waiting about 45 minutes we were told they wouldn't sign the paperwork because we had never actually been tested for hepatitis, tuberculosis, or HIV.  I tried so hard not to get frustrated, but was feeling pretty bummed.  Not only did we have to pay the travel notary anyhow, as well as our co-pays, but I have been going to the same doctor for about 22 years and David has been going to them for about 11 years.  They have done blood work for both adoptions, and we are always very healthy.  Not to mention the form said that it was "upon examination", not via blood test.  However, I do understand the only way to really know is to test us, so we went ahead and got tested.  All of our blood work and testing came back negative, as we expected, so they said they are now ready to sign the paperwork.  I made an appointment for tomorrow, as that is what worked for our travel notary, but I cannot be there as I teach at homeschool co-op.  I asked if I could drop off the form for the doctor/notary, since my signature does not need to be on the form,  and they said that was fine.  Once David got there to drop off the paperwork, though, they had no clue what the paperwork was for once we dropped it off.  Sigh.  Please be praying it all works out and the paperwork is able to be signed and notarized tomorrow, since this is one of the last "big" things I need to do in order to complete the Dossier.

 

Thank you for following our journey and sharing in our excitement! 

 

Ramya's New HKFOs... Spina Bifida Won't Keep Her Down!

Ramya had KAFOs (leg braces that went up to her thigh), but she was really struggling with walking and posture, so we had her fitted for HKFOS (leg braces that go up to her tummy).  Ron, at Hanger, did an awesome job as usually, and she loves them!  I can't wait to work on walking with her.... spina bifida isn't going to keep this girl down!  Here are a few pictures of her new braces....

 

 

We have two appointments downtown this week, so I decided to take the kiddos to Whole Foods for lunch to make our first trip special.  The love their gluten free pizza (you can even get it with dairy free cheese!!), and also enjoyed some sorbet for dessert. They were pretty happy kiddos!

 



Thursday we head down to see Dr. Goggins, our new orthopedic surgeon.  We are praying we can get a good picture of Madi's scoliosis and a clear game plan on how to proceed with detethering surgery.  I will keep you updated!

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!!
 

Madi's Scoliosis Brace and Upcoming MRI Date

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

 

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

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

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

 

 

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

 



 

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

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

Thank you for being our prayer warriors!!

Fitted for Her New Back Brace

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

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

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

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

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

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

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

 

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!