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Thursday, November 20, 2014

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! 

Tuesday, November 18, 2014

Madi Singing While She Walks in her HKFOs

This girl cracks me up.  I love her confidence and creativity.  She brings so much joy to our house!  She loves to make up songs and is constantly singing.  Here's the most recent one she sang while walking.


Saturday, November 15, 2014

Madi's Frozen Friend Party

Today was Madi's girls-only friend party (she was pretty serious about the girls only part :)) and we had a blast!  Two very special guests came to visit us and spend the day with us.  I expected a bigger reaction from Madi, but once she realized they were there to celebrate with her, she was very excited and really enjoyed their company!  Here's a video of our special guests arriving....

Anna and Elsa did glitter tattoos, face paint, and singing/dancing with the girls.  They really loved it! 
Here are some pictures from Madi's big day....
The cake is gluten free and vegan, purchased from The Gluten Free Creations Bakery.  The cake pops were full of all the good stuff, and were raved about (purchased from a friend who makes them). 

Conner made most of the dipped pretzels to the right and was very proud of himself.  He did a great job!  Our friend Hailey helped with the dipped marshmallows too and she had a blast.


I used to babysit and occasionally mention "Baby K" in our blog... she's not a baby any more!  She's such a sweet girl :)

Facepaint is for grown-ups too!  Though we realized it was kind of awkward trying to catch both our faces in a photo, hence the second photo :)...

There was singing and dancing of course....

I seriously cannot believe she is 6 already!  She is such a special little girl; you can just see the joy that radiates from her!  We love celebrating every minute of her!

And of course there were presents galore, which Madi loved!


A big "thank you" to everyone who celebrated with us and helped make this such a special day for our girl.  We love each and every one of you!


Tuesday, November 11, 2014

Madi Turns 6!

Today my sweet, smart, sassy, joyful, loving little girl turned 6.  She was so excited and has been beaming all day! She really loved her family birthday party today (Saturday will be her friend birthday party).  She wanted a Frozen party, of course!  She requested donuts instead of cake and got her wish.  I made a bunch of Italian food, and she loved that as well.  Here are a few pictures of my beautiful girl's party...


Her dress sings and lights up :)


Birthday donuts!

Happy birthday Madi!  We love you to the moon and back (a million billion times)!

Saturday, November 1, 2014

An "Us" Kinda Day

I know I mentioned in my last post that we have been crazy busy.  In addition to our weekly therapies for attachment, speech, occupational, physical, and cranial sacral, we have also had a lot of testing and appointments.  We have all been feeling the strain and decided that today would be a down-day, with nothing planned or on the schedule.  It was just what we all needed!

This morning we all slept in a little and then decided to ride our bikes to The Good Egg for breakfast.  I LOVE eating breakfast out, but it's something we do not do often.  After we got home we spent some time talking and playing with our neighbors, ate lunch, then headed out to see Alexander and the Terrible, Horrible, No Good Very Bad Day.  We all laughed and really enjoyed it.  We had to pick up Madi's Keppra so we ran in to Walmart afterwards, then come home and played outside a bit.  After dinner the kiddos got a bath and then they headed to bed.  It was a relaxing and wonderful day, and we hope to have more like it soon!!

P.S.  I can still haul the girls around on my bike, but they are just under 100 pounds combined now.  It's getting harder, I admit!!  Does anyone have a good solution?  If so, please comment here or message me.  Thank you!


Friday, October 31, 2014

Halloween Fun with the Vepreks

The kiddos had a lot of fun carving pumpkins yesterday and going trick-or-treating today.  We had a potluck with our neighborhood group and then set out in the neighborhood for some trick-or-treating. 

David let the kiddos pick a costume for him, so Conner picked Optimus Prime, because he was Bumblebee.  I had gotten a Pocahontas costume at Goodwill, so Ramya decided she wanted to be Pocahontas too.  Madi got a mermaid costume that she loves.  Here are some pictures of our fun times!


Thursday, October 30, 2014

My Momma Never Said There Would Be Days Like This....

If you've wondered why I've been so quiet lately, it's because we've been really busy!  It seems that each day is filled multiple appointments and/or multiple therapies lately, not to mention homeschooling, homeschool co-op, neighborhood group, Church, and the rest of "life".   I'm looking forward to it calming down a bit within the next few weeks.  For now, we are just enjoying and cherishing moments of joy and togetherness amid the hustle and bustle.

As for medical updates, we have a lot!!  Adoption updates are slow.  I'm working on some paperwork and we're waiting for some approvals, and that's about it.  We go in for our Biometrics in a few weeks and then hopefully things will move a little faster.  I also hope to get a bunch of paperwork notarized at the bank next week, as well as at the doctor's office.  The paperwork isn't due yet, but I want to keep plugging away at it in hopes of having it done when the time comes so that it doesn't hold anything up.

And now for the medical "stuff"....

  • Ramya got fitted for her first wheelchair a few weeks back.  She has been using Madi's old chair, as she still fits in it, but the wheels have started crumbling.  We could buy new wheels, but she's finally growing and won't fit in it much longer anyhow, so the time has come to get her a new one.  She picked purple, of course, and is very excited!!  We should have it in about 2-3 months.
  • The 3 kiddos got eye exams a few weeks back.  Ramya's eyes are adjusting well to her new glasses and the strength.  We are starting a taping exercise to help re-train her muscles and hope that works well.  We are really hoping to avoid an eye surgery and are trying anything we can first.  Conner has a hard time converging his vision/eyes, but it's minor, so for now we are watching it and hoping he grows out of it.  Madi's eyes are just fine!  Conner and Madi were really hoping for glasses so they are a big disappointed that they do not need them.
  • Ramya has been undergoing a series of psychoeducational tests over a few days and weeks at the Melmed center to determine where she is at educationally and how we can best help her learn.  The test was pretty consistent with the testing done at the school district and what I'm seeing at home, however, it gave me more detail about how to help her learn.  Her lowest areas are working memory and fluid reasoning.  Her strength is quantitative reasoning.  She does best when she has visual cues and has a visual plan, so I am going to make a bunch of "social stories" in picture form for her (aka.... pictures of how we brush our teeth, how we get dressed, how we eat, our daily schedule, etc...).  I am also supposed to start working on environmental print so she can start identifying and learning sight words based on commonly used objects (chair, table, door, plate, etc....).  Other than that, I was told I'm basically doing what I should be doing when it comes to working with her.  I would like to find a tutor for her that can come to the house a day or two a week that is knowledgeable in working with kiddos with learning struggles that can also help me with strategies for helping her learn.  I know that the testing is skewed for her and that she will test lower just because of her language, so I'm not too focused on the numbers she got, but I do want to help her learn in ways that best work with her learning styles and abilities.  
  • Madi and Ramya had follow-up appointments with urology and both girls are doing well.  They go back in 6 months for renal ultrasounds and another visit.
  • Ramya was evaluated for speech therapy and qualified.  Her articulation is great, but they will help her with language processing and things like that.  She had her first session and enjoyed it!  We were able to find someone that does in-home therapy, so I'm happy about that.
  • Madi got her new HKFOs from Ron at Hanger and they fit her really well.  Ramya also got hers widened so they are fitting her much better now.   They are both happy girls!  And of course, we went to urban cookies afterwards for vegan gluten-free donuts, so that made them especially happy!
  • Cranial sacral therapy, occupational therapy, attachment therapy, and physical therapy are all  going well and the girls are doing great!  
  • I think I finally got to the bottom of our appointment mess and how to coordinate the girl's appointments.  Basically, Madi is AHCCCS for her secondary insurance and she is supposed to go to CRS (children's rehabilitative services) to see her doctors.  Ramya is finally on AHCCCS but was never put in CRS.  Because of this, we were still having to make separate appointments out of different offices even though they see the same doctors.  Ramya should have also been put into CRS, but after many hours of calls, we found out they coded Ramya's disability differently than Madis, even though their primary "labels" are the same, so Ramya never got put on CRS.  We think it's all fixed now and an application has been submitted, so hopefully she will get in as well (she should) so we can start coordinating appointments better.  
  • Poor Madi got two spots we think are staph.  One is by her mouth and one is in her pull-up area just under and to the left of her vesicostomy.  We aren't sure how she got them, but considering she rolls on public bathroom floors with her wheelchair, I'm not too surprised.  I always wash her hands, but then she touches the dirty chair  wheels (she is always playing with the wheels though she actually uses the little railing for wheeling). I am going to start disinfecting the wheels when we leave the bathroom to help avoid this type of problem in the future.  Our naturopath prescribed an antibiotic cream for her, and I have her on colloidal silver as well.  It's just about all cleared up.  The tricky part has been keeping the area below her vesicostomy clean and dry, so she's been having lots of "naked time" to air out.  I use waterproof pads and prefolds under her on her little chair, then a rolled up prefold over her vesicostomy that I change often.  At night, I use a waterproof pad under her with moisture-wicking material on top and absorbency, then prefolds under her and on her vesicstomy, and I change them about every 2 hours.  I'm not sleeping much, but it's working and keeping her dry.  I also am doing insane amounts of laundry, but it's worth it, because the spot is almost gone.  I'm really hoping to avoid oral antibiotics unless we need them.  
  • Ramya's food panel finally came back (LONG STORY) and it's not showing allergic reactions to beef and pork, but it could be because we eliminated those foods after her last testing.  For now we are going to continue to avoid them and then slowly reintroduce and see what happens.  I'm praying her gut is finally healing and she will be able to eat beef and pork again, in addition to the many other foods she cannot have.  
  • David and I got tested for the MTHFR gene mutation and each have it to a degree.  That's a big post I will post later and talk more about, but it makes a lot of sense.  We are staring supplementation with methylated folate and methylated b vitamins for ourselves and the kiddos. 
I think that's all of the big updates from the last few weeks.  Don't forget to join us for the rock-and-roll for spina bifida on November 8th... go team Double Trouble!!