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.

 

 

 

Woooo Hooooo Our NOC is Here

I got an e-mail from our adoption counselor today with our NOC!  Yeah!  The NOC is a certificate they issue that states they have no objection to us adopting D specifically.  Next up is court.  Court can take quite a while, especially considering they take a few months off in the summer, so we are praying our paperwork moves through at lightening speed.  Please join us in praying for this!  After court we will apply for her passport, which can take 1 or 2 months, and then off to India!  Exciting!!

 

Wearing a Special Needs Child

David and I have always appreciated being able to wear our babies and keep them close.  In order to keep an active lifestyle with our girls, though, it's still very important to us to be able to carry them around.  The problem, of course, is that as they get bigger the girls get, the harder it is to find a solution that works for us.

When Conner and Madi were tiny, I loved a good baby wrap.  Once my kiddos got a little bigger I really loved my Beco and Ergo carriers.  After Madi got even a little bigger and we adopted Ramya, we needed something even bigger yet.  We got Babyhawk O' Snap carriers in the toddler body size and really liked them.  It wasn't too long though before they outgrew those as well.  The carrier we now use is the Kindercarry in the Preschool size.  This is a really nicely padded carrier that is also nice and wide to keep their legs and hips in proper alignment.  It also has a nice long body.  Once the gals outgrow this I'm not sure what we will get next, but we are hopeful these will last a while longer.  Here are a few action shots with us out hiking.  Our backs didn't hurt afterwards, but our booties sure did hiking up the hill!

Such a Fun Day at Sky Kids

Today we attended the Sky Kids event for the first time and LOVED it!  It was so much fun! 

Sky Kids is an event put on once a year where kiddos with special needs are given the opportunity to not only fly in a plane, but also to help fly it.  It is amazing!

Ramya and David got to ride in a helicopter flown by Bruce Haffner from news channel 3.  Ramya loved getting to ask questions and help fly.  David said she asked a LOT of questions, and she sure was beaming afterwards!

I wanted to ride with Madi just in case she had a seizure (thank God she didn't), but I will admit I was a little jealous of them riding in a helicopter!  

Madi was afraid to sit up front and fly so Conner got to help fly our plane.  Our pilot, Roger, was so sweet with the kids and Madi kept him cracking up.  He had told them that they could wear headsets and tell jokes that I couldn't hear.  I heard Madi saying, "Over and out Roger, and that's not a joke, that's what you say when you fly!".  The entire plane ride she gripped the mic on the headset and said random numbers and jokes.  Conner was on cloud 9 getting to fly and was grinning from ear to ear the entire time.  

I think this just about sums up how Madi felt about flying....

They really thought through every detail.  They gave the kids pilot wings after the flew, they had activities set up for while you waited to go up, and they had lunch for you when you were finished.  

The Goodyear Fire Department came and let the kids look around a fire truck and sit in it....

The SWAT team came and let the kids check out their gear and huge SWAT truck...

Miss Arizona (who also won Miss America one year) came and brought the kids suckers and tiaras.... 

There were therapy dogs to cuddle with and pet....

The Phoenix Suns gorilla made an appearance...

And there were even storm troopers!  Some of them had some pretty good dance moves too...

Oh, and the kids were enthralled with the yo yo masters that came...

Everyone was really helpful and truly went out of their way to make sure the kids had a good time.  I'm sure it took a lot of hard work to bring the whole day together and we really appreciated it.  It was such a wonderful experience!  Thank you Sky Kids from the bottom of our hearts!

A Video of Ramya Walking

Ramya is doing really well with her walking and we are so proud of her!  For some reason I cannot find my older walking videos of her and I'm bummed because she's made such HUGE strides and I would love to be able to show everyone the difference.  The first videos of Ramya walking were just a few seconds long.  She was too nervous to have me step away and could also only take a few steps before getting tired.  She was afraid of falling and tired very, very easily.  For a while we took a break from walking and just focused on confidence, core strength, and building our leg muscles.  We also moved her from KAFOs to HKFOs (so from leg braces that went to her thigh up to leg braces that go up to her tummy).  We spent over a year just working on all of the skills leading up to walking.  I am proud to say she is now confident enough to take a trip around the kitchen without help!  Her endurance has also increased so much.  It's amazing seeing her transformation!  Here's a video of her cruising in the kitchen....

 

An Updated Video of Madi Walking in her HKFOs Using Arm Crutches

Madi told me that she wants to wear her "up ups" (aka hkfo's) and use her walking sticks to walk down the isle when she gets married (in about 20 years I say ;)).  I told her she better get to practicing!  She's been doing awesome and has been starting to balance so much better. She's now able to take a few steps on her own which is a huge accomplishment! Just a few months ago she couldn't balance, let alone take steps.  I think the therapeutic horseback riding is really helping her with her balance and core strength.  The doctors said she would never walk considering she is an L2 level.  One thing the doctors can't judge when they determine someone's level of lesion, however, is their level of determination; and that is what makes ALL the difference!  Some days she doesn't feel like walking, and I don't force her to, but mostly she really loves being up and mobile.  She's so very proud of herself too!  Here's a video of her and our new PT Kelly....

I Finally Have an Adoption Update!!!

Adoptions in India are slow.

Really, really slow.

Sometimes you will go months without hearing anything.  It is so hard not getting updates or knowing that your case is being worked on.  This time around our adoption has been moving even slower.  Because D's orphanage is closing, we are working through another organization to process our paperwork, which adds another step.  We send everything to D's orphanage to do their part.  They send it to the next organization to do their part.  Then it is finally able to go to the department it needs to go to.  It sits there for a while because of holidays, multiple signatures needed, etc... and well, you get the point.  It takes a while.  Our adoption agency is wonderful and is always checking on things for us and trying to move our paperwork through faster, but it's just a slow processes.

David and I were starting to get discouraged.  David's been struggling at work for a while now and it's been really stressful for him.  The adoption seemed to just be sitting stagnant and nothing was happening.  Add in a few seizures and normal appointment/ homeschool/ insurance battles/ church/ co-op/ therapy craziness and we started questioning if we were doing the right thing.  Of course we both know beyond a shadow of a doubt that we are, and we both love D very much and are excited to be able to bring her home, but there are still those moments where we feel doubt creep in.  Both times we have adopted it feels like we are under attack before we bring our kiddos home.  Everything seems to go wrong at once.  We know we were doing what we were called to do, but it can be hard none-the-less.  God always brings us through, though, and we have no doubt He will again. 

A few days ago I prayed that God would move this next step through quickly for us to bring us renewed hope and endurance.  A few weeks ago we had finally heard we were approved in her state, the very first step, but it took us about 4 months to get that far.  This morning I woke up to great news.  Our Article 5 was issued this week.  This means (I think... sometimes it's hard to keep it all straight) that D has been officially declared free to adopt Internationally and was given clearance to leave the country when the adoption is finalized.  They also said our NOC (No Objection Certificate), which will officially match D to us should be signed next Wednesday!!  This is a big step, because once we get the NOC we can start sending her gifts from us and she can finally know we are here waiting for her.  This will also mean we can start the court process in India to finalize the adoption.  After that portion is finished, we will be able to submit for her passport.  We still may have a long wait for all of that to happen, but there is a good chance we will be able to travel by the end of the year to bring her home.  That means that we may officially be a family of 6 by Christmas!  Yeah!!

Keep praying that our paperwork moves through the court system quickly and that we can bring D home soon.  Please also start praying that while I am in India David, the kiddos, and I will all be protected and safe, and that Madi will not have any seizures while I am gone.  I know we are still a long ways off, but that's an important thing to start praying about. 

Thank you for walking this journey with us.  We really appreciate each and every one of you!!

On Arizona Gives Day (April 7th) Choose Hope Kids!

We love being part of Hope Kids and a great opportunity has come up for you to help support this awesome organization!  I'll paste the information below...


I want to quick share a way for YOU to help bring HOPE to up to 600 HopeKids family members. On Tuesday, April 7th, we are joining together with other non-profits across Arizona by participating in Arizona Gives Day,  which is a 24 hour campaign to raise money for charities in Arizona.  On April 7th, you can choose to support HopeKids, through making a donation.  We have set our goal to raise $2,000 in one day, which will be enough to sponsor our June private movie screening & provide laser tag, bowling, and arcade games after the movie.  Alone, you are one person, but together we can have a huge impact in the families we serve on this one big day of giving.  Please click the link for more details and to make your donation to help sponsor our June movie:  https://azgives.givebig.org/c/GivesDay/a/hopekids 


If you are looking for a place to give, please consider Hope Kids!  Thank you!

 

Thank God We Have It!!

WE GOT HER MEDICATION!!!!!

(insert HUGE sigh of relief here....)


Whew. 

Yesterday our neurologist called to check on Madi and see if she was able to take the pills he prescribed.  We had tried many times, but unfortunately, she just couldn't do it.  She tried really hard, though, and I am proud of her for that.  We decided to do one week of generic, even though it bothers her system, because going without just isn't an option.  The generic didn't get called in, though, so I continued to use the emergency fill of brand-name I had, which was getting very low.  This morning I called the neurologist office to have the generic sent in and got a call back about an hour later to let me know that they had just checked with both of our insurances and we could officially get our brand-name now.  YEAH!  I called our pharmacy and they were able to run it through.  I was SO relieved!  I think I thanked both the neurologist office and Walmart about 10 times each :).

Though it always stinks to have the stress of fighting with insurance, the extra calls, and the worry about your kiddo, I am so thankful for people in our lives who love Madi and will work so hard to get what she needs.  I'm thankful that the neurologist cares about her enough to take time out of his insanely busy schedule to call us himself and check on her, making sure we got a solution.  I'm thankful for his staff who didn't give up and spent a ton of time calling insurance and helping us resolve the issue.  I'm thankful for a pharmacy where they know her by name and always go above and beyond for her.  They spent at least an hour on the phone helping us as well.  I'm also thankful for our friends and family who encouraged us and prayed for us while we tried so hard to get her medication.  One thing is for sure; we are blessed beyond measure!


P.S.  I asked if I could crush the  medication and give it in pudding or juice or something and he said no, absolutely do not crush it and give it to her.  I'm glad I asked first!


 

Yawn... Oh What a Week!

Insurance.  Bleh.  I have a love/hate relationship with insurance.  I love insurance because there is no way we could afford all of the girl's equipment and medication and testing without it.  For that, insurance is my best friend.  It always seems to be something I am fighting, though, and I get so sick of being on the phone with insurance, trying to figure things out.  This week's fun is Madi's seizure medication.  

Madi started running low on her keppra and I just had a weird feeling it might take longer than normal, so I called it in a day early.  She was on generic Keppra for years until she started getting belly issues and rashes.  At that point, which was about 6 months ago, we switched to brand-name Keppra.  Everything has been fine, until this week.  Suddenly secondary insurance wouldn't pick up their share, and our co-pay from primary insurance is a little over $600 for the month's supply.  The pharmacy called our insurance companies, numerous times, trying to figure out the issue (in fact they spent well over an hour on the phone with our insurances, and I sure appreciate their dedication!  I, myself, have spent multiple hours on this as well.  Yawn!).  First they said they needed pre-authorization, so the pharmacy and I called the neurologist office and they sent it in.  Then they said it needed the pre-authorization to go to primary first.  Again, pharmacist office and I called the doctor's office and they sent that off.  It still got denied, so then they wanted to know why she was on brand name, which we clarified.  Then they wanted to know why the dosage was changed (which wasn't until this weekend, after they initially denied it anyhow), which of course was because she's still having seizures and had the ambulance ride and ER trip this weekend.  What is making it even more stressful though is that now the pharmacy has given us two emergency refills, and said they can't give us any more (though I plan to beg and plead anyway).  At that point, I don't know what to do other than pay the $600 co-pay, because there is no way I can skip dosages.  This medication is way too important.  

We had to follow up with our neurologist because of the dosage change they gave us in the ER, as well as Madi's recent seizures, but when I called Monday to make the appointment, they said he didn't have any openings until the end of May.  We needed to get in faster so they told me to leave a message with the nurse.  Thankfully, though, before the nurse even called me back the secretary called and asked if I could come in Wednesday (today) as they had a cancellation.  I was so happy to get in quickly!  This afternoon we headed down to the neurologist and discussed Madi's recent seizure (which we now think was caused by the heat of being outside so long for the horse show, even though she was drinking a lot of water).  I also told him about the medication problems I was having so he called the pharmacy while we were sitting there to try and get everything resolved.  He wasn't able to make headway so he promised to get his office manager on it and help figure it all out.  He also wrote us a prescription for Keppra pills (generic, but they will have no fillers to bother her), because if Madi can swallow those, our problems would be solved.  I tried to get her to take them tonight, though, and she couldn't.  The other issue is she has to take 3 in the morning and 3 at night.  She has a crazy high gag reflex and it makes it hard for her.  So far she hasn't been able to even swallow one.  Luckily I still have some of the liquid Keppra left, so I was able to give her that.  I'll try again tomorrow morning with the pills and hopefully that will work.

At about 4:00 this evening I got a call from our neurolgist's office saying they think they got it all figured out and we should have our medication within 24-72 hours.  I am REALLY praying that is the case and I am also really praying for the 24 hours so that we don't run out of the liquid keppra.  I would really appreciate everyone joining me in prayer on this!  

For now I am off to bed.... I'm exhausted!!  Thank you for joining us in prayer.  Let's pray tomorrow is the day we get her medication!