Join Team Double Trouble as we Walk for HOPE with HopeKids!

This year, in addition to walking in the walk-and-roll for Spina Bifida, we will also be walking with Hope Kids!  Please consider walking with us, or donating to Hope Kids in our girl's honor. 

Hope Kids is an amazing organization that we LOVE!  They put on amazing events for families that have little ones with serious medical needs.  They bring families HOPE during their times of trials, and are an amazing support to those families and children.  Please help us bless them, as they have blessed us!

http://www.firstgiving.com/fundraiser/jamie-veprek/hopewalkaz2014

New HFKOs, Brand-Name Keppra, and a Flooded Car.... YEAH

Today was quite the day!

It started with me waking up to David describing how he drove to get an iced coffee but ended up stranded in a parking lot instead.  It was pouring down rain and had been for hours.  There was major flooding and the roads where terrible.  He was in the grocery store parking lot, but couldn't see well because it was 4:30 am and dark, and accidently went into a deep drainage area in the parking lot.  His car stalled.  There was smoke.  He couldn't get it to start back up.  He tried to push it by himself but it wasn't budging, so he locked it up, turned on his hazard lights, left it there, and walked home.  It was not in a parking spot and was kind of in the middle of the driving lane, but there was nothing else he could do.  My sweet hubby didn't want to make me come get him at 4:30 in the morning, since I would have to drag the kids out of bed, and we live pretty close to the store, so he just walked.  I am not sure why he didn't call my dad, but apparently he enjoyed the walk, and as an added bonus, he got a shower too!  After that he was crazy busy at work and couldn't leave while I was still there, and then we had to leave for an appointment downtown, so it sat for a while.  We were afraid it was going to get towed so later in the day our very kind neighbor, Jerry, took David to his car and helped him push it out of the way and in to a parking spot.  After I got home we called a tow truck to take it to our mechanic.  Unfortunately water got in the motor so we are praying there is minimal damage.

 

 

On the plus side, Conner loved "building dams" after the rain died down.

 



 

 

Today both girls had an appointment with Ron at Hanger to get their HKFOs fitting them.  The downtown area was flooded, and of course that is where we were headed, so my dad came with us to make sure we were safe.  I am pretty spoiled with an amazing dad who loves us very much!!  It was also nice to have an extra set of hands since I had so much cargo to haul.  It turns out Madi needed brand new HKFOs so she got casted for them.  We should get the new HKFOs in about a week.  She wasn't sure if she wanted "a zillion Scooby-Doo's" or just plain pink, but decided on just plain pink.  She did a great job being patient while Ron casted her.

 

 

(Ron was a great sport and let Madi measure him :))

 

(Conner was a great sport as well and baby-sat Madi's new tiger for her while she got casted (yes, that is a glove she drew on ;))

 

 

 

Next up came Ramya.  The great news is she has GROWN and her HKFOs finally needed an adjustment!  Yeah!  He made them 1/2 inch taller and also widened the back portion a bit.  She did great with waiting as well and we were able to take them home fitting, which was wonderful.

 

 

 

On the way home we stopped at Urban Bakery and the kids got gluten-free vegan donuts.  They had been really good for the appointment, which was a few hours long, so I wanted to surprise them and get them a little treat.  My dad stayed in the car with them and I ran in and picked out a few.  I got my dad a few cupcakes too, because there has to be some perk for helping me wrangle 3 kids.  Ramya didn't want hers (I will never understand how a kid can say no to sweets!  I even got her favorite kind... vanilla with icing), but Conner and Madi gobbled them down very happily. 

 

 

 

 

We were also able to pick up Madi's brand-name Keppra today... YEAH!!  I am really praying this helps with her rashes.  There's some back-story on getting the medication, but it was not too bad!!  On Thursday we headed out to see The Rugrats Live with the kiddos.  I had forgotten my phone but decided not to go back for it because I thought it was too late in the day for calls from the doctor.  Of course I came home and realized I had missed a call from our neurologist at 7:45.  I was bummed!!  I called the next day, Friday, but couldn't get ahold of him.  His nurse said he had made notes in the file stating he had called our pharmacy and they were working towards getting the brand-name keppra approved.  The nurse suggested we talk to the pharmacy to verify.  The pharmacy said they did not have a record of this, but talked to George, the main pharmacist who thankfully loves our kiddos, and always remembers us, and he got right on getting it approved and processed.  He called the neurologist office, called me back when he couldn't get through to ask me the best way to get ahold of our neurologist, called again his office again, and then left a message with Dr. Condie's nurse.  He called me back after that and told me he hadn't been able to reach them but would order the brand-name for Madi anyway and figure the rest out later.  Thankfully the nurse called him back shortly after that and sent him a prescription for brand-name keppra, so he ran it through insurance to make sure he didn't need to call them as well, and then called us back and let us know it was all taken care of and our prescription would be ready Monday.  I'm thankful it all worked out and getting it was relatively painless!!

 

 

Next on this week's to-do list is picking up Ramya's glasses, setting up a hearing evaluation, calling to see where we stand with getting Madi oxygen to use during seizures, getting some blood tests done (the MTHFR mutation test for me, and food (IgG and IgE) for Ramya and Conner), homeschool co-op, OT, PT, and the play Charolette's Web.  Oh, and I am getting a teeth cleaning.  It will all be worth it though because we go out of town next week for vacation... woooo hooo!





 

 

 

 

 

Our Newest Wheelchair Decorations.... Disney Style!

I took the girls to Michaels and let the girls pick out new decorations.  They both decided they wanted Disney decorations, since we are going to Disneyland soon.  I told them to pick out anything that reminded them of Disneyland.  This is what we came up with....

Madi's Chair....

 The ribbon is Disney princess ribbon and the Hello Kitty is a mermaid....

 

 

Ramya's Chair...

 

Purple, of course...

 

 

It took a few hours to get these all on the chairs but it was so worth it!  They love them!

 

Appointments Galore.... Ophthalmology and Neurology

Last week I brought Ramya to an optometrist/ vision therapy specialist who works with kiddos needing vision therapy, specialized glasses, etc...  Ramya's left eye looked slightly off in the photos we would receive from India, but I hadn't really noticed any problems after she had been home for a short time.  I did notice, though, that she had a hard time at midline  (which can be common with kiddos that have spina bifida), had a hard time with tracking, complained of her eyes bothering her sometimes, and I still wasn't sure her glasses prescription was correct.  Tami, our PT, suggested we see Dr. Glonek.  Dr. Glonek was very thorough and spent over an hour with her.  He said that her eyes are crossing when she is trying to focus on something (and now that he said that, I can't stop noticing it... he is totally right!!).  He said he doesn't think vision therapy will help her right now because it's been happening for so long and her muscles have now grown differently.  At this point he thinks there is a good chance she might need an eye surgery.  He wants to try and re-train the muscles first, before we talk about surgery, but he's not sure that will do the trick.  She is a  +0.75 prescription, but he wants to put her in +1.25 to see if over-correcting her will make her muscles work a little more. If that doesn't work,  we will have to see Dr. Cassidy, a surgeon, and then will follow up with Dr. Glonek for vision therapy after the surgery.  We ordered new glasses and he wants to see her after she has been wearing them a month to see what kind of progress she is making.  I am praying that the change in glasses will help and that she will not need another surgery.  I also had him take a quick peek at Madi and Conner, and it seems they may be having some problems too, so I will have them checked out more thoroughly as well when we go pick up Ramya's glasses. 

Orphanage photos...

 

 

 

Now...

 

 

 

 

Today I took Madi down to PCH for an appointment with Dr. Condie, her neurologist.  He didn't get to see her last time we were admitted to PCH, and though they said we didn't need to follow up with him until our next scheduled appointment, I had some questions I wanted to discuss.  His wife is about to have a baby so getting an appointment with him was tricky, but the squeezed us in and I was very thankful!  He also spent about 45 minutes with us so that we could really talk things through, and it always means a lot to me when a doctor is willing to take that kind of time with us. 

 

I told Dr. Condie that I would like to have oxygen at home to put on Madi when she is seizing.  The clonazepam, her rescue medicine, never seems to be enough.  The turning point for getting her to stop seizing seems to be once the paramedics put oxygen on her.  I told him I want to be able to pop a clonazepam in her cheek and then put an oxygen mask on her right away in hopes that we can stop the seizures quicker and bypass the need for the extra doses of clonazepam, the paramedics, and a trip to the hospital. Madi has really only had 4 seizures this year, which is wonderful, but they were very long ones (they can easily last between 20-45 minutes at least!).  We agreed that the quantity of seizures is no the big issue, it is the duration that is such a problem.  He agrees that the oxygen would be a good idea for her and said it may take a little time to get it, as it's not a regular prescription, but that he thinks he can get it for us.  We left her Keppra dosage the same and are going to try the oxygen for now and see how it goes.  If this doesn't help, she may need a second seizure medication at night before bed (the kepra is twice a day). 

 

Another issue I talked with him about is rashes Madi has had around her mouth.  She gets the rashes any time she gets a little gluten or dairy, but even being very, very careful with her diet (we don't eat many processed foods anyhow, and I cook mostly from scratch), I cannot seem to get the rashes to go away.  I asked if it could be from her Keppra, as we get generic.  He said it very well could be from the generic form of keppra.  With generics, they can change the formula of their suspensions (the medication itself is the same, but what they mix it with can vary) and not notify anyone, so it very well could be that they changed the formula and she is now reacting to something in it.  We are going to try non-generic keppra and see if that takes care of it. 

 

Dr. Condie would like Madi to see an allergist because of her food sensitivities, as well as how she reacts to bug bites (I was telling him I would like to get an Epipen, just in case, because she gets huge welts from bug bites and I worry what a bee sting could do to her).  Today when I brought her in she also had a rash all over her chest, abdomen, armpits, and legs.  I have no idea where the rash came from or why she had it.  He gave us a referral to an allergist that works out of phoenix children's hospital (PCH) and we will make an appointment with her tomorrow.

 

Other than that we don't have any big updates.  We head to California for about a week and a half and will spend 2 days at Disneyland while we are there.  The kiddos are SO excited!!  We have quite a few more appointments to cram in between now and then, so these next few weeks are going to be busy.  We can't wait to go and relax though, and it will all be worth it!!



 

 

 

Two HUGE Answers to Prayer This Morning

This morning shortly after I woke up I got a call from Pryanka, our adoption counselor at WACAP.  She said CARA (the organization in India that oversees adoption) finally put Deena's information on the CARINGS website (we have been trying to do this for many months... the CARINGS website is the site that they load children on in India so they can be matched with families), and WACAP was officially able to match us with her!!  Our information was still on the CARINGS website from when we adopted Ramya, and though they aren't sure why because we are the only family still on there after adopting, it meant they could use that information to match us!  Well, they may not know why, but I know why.... God can move mountains and He heard your prayers for us!  This is a HUGE and very reassuring step in our second adoption.

And wait, it gets better!!

I hopped on my e-mail to send a message to Oasis, our homestudy company, to inquire about our homestudy approval.  It's been sitting on a judge's desk for months and we have been waiting for approval that whole time.  Well, before I had a chance to e-mail I saw an e-mail had come in saying OUR HOMESTUDY IS APPROVED!!  YEAH! 

The next steps for us are to get approved federally through the US, and then through India.  This means a ton of paperwork, lots of notaries and all kinds of crazy things we have to do.  There will be many hoops we have to jump through.  Please be praying we are able to get this all done quickly.

Thank you again for your prayers, and please keep them coming!!  Exciting things are happening!

A Review of Kidecals.... We Love Them!

Kidecals ( http://kidecals.com/) contacted me and asked if I would like to write a review in exchange for some of their decals/stickers.  I glanced at their website and noticed they had chalkboard stickers and very excitedly said "yes"!  I have been wanting some chalkboard stickers to use on my canning jars and couldn't wait to get them and try them out.  I also saw a "no soliciting" sign I loved, so I ordered that as well.  They have a lot of cute stuff so it was hard to pick!  They also have keyboard decals, name stickers, and lots more!  Here's a picture of what I picked....

 

 

 

 



I was worried I wouldn't like the chalkboard decals because in the past I have found that the material is too slippery and the chalk doesn't write well on it.  I was very pleasantly surprised to see that the chalk went on evenly and it showed up very well.  I was pretty impressed!  They decal is also not a flimsy decal that bends easily, like some of the others I have tried.  It's nice and thick so it peels off well, is easy to position correctly, and it stays on well. Here's a picture of the chalkboard decal in action on my pickles (I made fermented pickles)...

If I was giving these as a gift, I would have done a better job writing nicely, but I like that the chalk when on nice and bold, without smudging.  I also used one for some elderberry syrup I gave my mom, but instead used a sewing pencil that was white, and that wrote very nicely as well.

Even if I had not gotten these for free, I honestly still would have been happy with my order.  They came quickly, they were nicely packaged, and they are high quality.  If I need more labels in the future, I will use them for sure!

http://kidecals.com/

 

Our Big Announcements... Finally!

Sorry to keep you on the edge of your seats!!  Life has been crazy busy and I just haven't had the time to sit down and start this blog post yet!

I'll start with our first big announcement, and then I'll go back and explain why this announcement has all of a sudden become so important/urgent.



We bought a lot and are starting on plans to build a fully accessible house!

We are SO excited!

It has always been our dream to build a fully accessible house for our girls and it really seems like the time is right.  Our house is up quite a bit from where we bought it at, we have lots of equity in our house, my dad is a general contractor and wants to build the house for us, and David is (well, at least he was.... this last week has been pretty rough on him) doing amazing at work, so it just seems the time is now.

Our date nights have started to look like this....

 

 

 

 

.... and we have an architect working on our plans as we speak.  We are also working hard to get our house on the market so we can sell it and pull the equity out to help us with building.  Along with everything else we have going on, it feels a little crazy, but we are excited.

 

I'll jump back now and talk about our next announcement, and why this has become an urgency for us.

 

Back in May of 2013 I wrote this post about trying to adopt again.  We started our homestudies and started perusing our second India adoption to be able to adopt Ramya's friend, Deena****, from India, who has ostegenisis imperfect., aka brittle bone disease,  Then life fell apart.  David was struggling hugely at work, I was afraid he was going to lose his job (though he wasn't afraid he would), he was struggling emotionally more than I have ever seen him struggle before, and things just felt so yucky.  We were in survival mode.  We started counseling and began working through everything that was going on.  For his sanity, we decided to pause our adoption.  It was a terribly hard decision and I never had peace about it.   That is where a whole different huge story comes in, so bear with me....

 

In October or November, I honestly don't even remember now because it's such a blur, I broke down in our neighborhood church group and shared how I never had peace about pausing our adoption.  I shared that it just all felt so wrong and I felt we weren't trusting God that we would pull through our storm.  I cried and let it all out, which is something I reallllllly am not fond of doing, especially in public ;).  My friend asked what would need to happen for me to have peace, and I said Deena would need to have another family so it was very clear we were not meant to be her family.  Well, I go home that night, open up my computer, and read that Vathsalya, her orphanage, was closing and ALL of the children had found families.

 

Wow.  I didn't even know what to think.  I cried even more, thinking I was wrong the whole time and we were never meant to be her family.  I tried to get in touch with our adoption agency and they tried to get in touch with Vathsalya so we could figure out what was going on.  At that time, David and I also talked and prayed, then talked and prayed some more, and then decided that if she had not been adopted to another family yet, it was time to start our homestudies back up and try to adopt her again.  Long story short, about a month goes by and we finally hear back that she had not found a family yet and that we could still adopt her, but because they were closing the way we would have to go about it looked different and it was unclear as to how we could get her in the system so that WACAP could match us with her.  Our adoption counselor at WACAP was actually headed to India in December and said that she would talk to Mary Paul, the director of Vathsalya, herself and try to see what we needed to do to adopt her.  There's more long story, more back and forth, and finally in about February we still didn't have any clear answers.  We finally decided that the best thing we could do was finish our homestudies so that if/when India found out how we could adopt her, we would be ready.  It didn't take us much to finish them as we only had to meet with Oasis, our homestudy agency, one last time.  Then we waited for a bit to get all of our new letters of recommendations and things like that in and we waited as the report was written up.  When everything was finally ready it was submitted to the state of Arizona for approval. 

 

With of all of the back and forth with the adoption previously, as well as all of the unknowns, we didn't publically share that we were trying to start the adoption process again with very many people.  We just kind of kept it to ourselves, shared with family and close friends, and kept on chugging along to get approved. 

 

As of right now, our homestudy is still sitting on the desk of a judge somewhere, and we are still not approved.  Though it's hard to go back and announce it all again, especially because things are very unclear as to whether or not we will even be able to adopt Deena, we feel it's time to let people know because the fact is that we need prayer to get our paperwork moving again.  If we don't share, people don't know how to pray for us, and that doesn't do any good.  We know we need your prayers!

 

So back to the house....

 

We have a big beautiful house, but it only has 3 bedrooms and an office (but David works from home and needs the office to work from and I homeschool from the living room since I need a nook to homeschool from).  We cannot have bunk beds, since our girls cannot climb up the ladder, so we have to have a room that we can physically fit 3 girls and 3 beds in, as well as wheelchairs.  We also need a bathroom that can be accessible for the girls, but the bathroom in this house is very narrow and will not work well.  We prayed and told God we would step out in faith to adopt Deena, but that He was going to have to help us figure out where she would sleep, since we just physically don't have the room for one more bed (she will sleep in our room for a while, but to adopt you have to have a bed for the child in a room shared only by other siblings of the same gender).  Now that we are working towards adopting again, we were, once again, trying to figure out how to physically fit another bed in our house.  It became clear that it was just time to try and find a new house so that the girls would have the room they needed.  We also really want them to have an accessible bathroom so they have more freedom and independence.  We looked at multiple houses in many different price ranges and found that there was just nothing that was going to work for our unique situation, unless we poured a ton of money in to a house, which would end up costing us more than just building.  Finding a single-story house that can be made to fit 3 girls in wheelchairs is, well, a challenge we discovered.  That's when we decided to try and pursue building. 

 

So there you have it.... our two big announcements are that we are building and adopting, all at once, because we are just nuts like that.  Oh, and we will be looking for a new car soon too, because my mini van just won't fit 4 kids and 3 wheelchairs.  Life feels a bit crazy right now with all the changes we have coming up, but we do have a lot of peace about the direction we are headed and we know it is what we are meant to do, no matter how crazy it feels.  We would really appreciate your prayers through this whole process and appreciate each and every one of you!  Please also pray for Ramya and our family as we are going through some tough things with her right now and could really use your prayers.