Whew... What a Week!

This is the time of year when all of our appointments come due again.  Although it's nice to get them all done at once and be done for another 6-12 months, it does make for some crazy weeks!  Conner's dental work and Madi's renal ultrasound kicked off our doctor business, and this week is the peak. 

Last Thursday I took Madi in to get her HKFOs adjusted, because she's grown (again).  We had a little surprise, though, when Ron told us that her HKFOs needed too many adjustments (again) and he would need to cast her and start over (again).  Madi is growing like a weed!!  We are excited about the adjustments, as her HKFOs were getting uncomfortable and, therefore, Madi wasn't too motivated to stand and practice walking, which she normally loves (mostly).  We weren't prepared for the hour-and-a-half appointment, but the kiddos handled it surprisingly well. 

Unfortunately we are without her up-ups for the time being, so we are hoping to get them back quickly!  And how does Madi feel about all of this?

Tuesday Madi had an appointment with Dr. Segal, her orthopedic surgeon.  It was quite a long appointment as there was a very long wait (read a few hours to get in) and unfortunately we weren't able to accomplish too much, as we didn't have her HKFOs with us.  I should have planned better, but oh well!  We will go back to see Dr. Segal, with Madi's HKFOs in hand, in three months to revisit her progress.  Dr. Segal discovered her left hip popping in and out of socket, which explains the sounds we've been hearing coming from her hip.  He thinks her right hip is in socket though.  Both her legs have about a 10% or 10 degree contracture (I can't remember which!!) that getting her back up and standing should help.  We also stretch every day and we are working on knee immobilizers to keep her stretched at night.  Other than that, she looks good!  We like Dr. Segal and enjoy our chats, so our time with him is never wasted.

It's hard to entertain a three-year-old for a few hours while you wait for the doctor, but we did it!  It took a little of this

Combined with a little of this...

And a whole lotta this

How does Madi feel about all of this?  This picture pretty much sums it up nicely.

Today I took Conner in to have his ears peeked at.  He has been saying they sound  "fuzzy".  I was pretty sure it was allergies, but wanted to make sure and also put Conner's little mind at ease.  Sure enough, it was allergies.

Tomorrow Conner has a dentist appointment to have a spacer put in.  He can't eat/drink for 3 hours before, but they said the appointment should go pretty fast.  I pray he does well, like the last time!

Friday is our appointment with Dr. Moss, her neurosurgeon.  We'll finally get to talk about Madi's seizure and see if Dr. Moss wants to order a more in-depth MRI to check her neurological activity as well as possible back tethering. 

Next week Madi has a urodynimcs test on Thursday, but it should be a pretty easy week!  If you have been wondering why I seem to have fallen off the face of the planet, I assure you, I haven't.  We have just been hiding out in doctor's offices and living it up on free dum-dum suckers!  We wouldn't trade it for the world, though :).



My Spina Bifida Awareness Tattoo

I got a new tattoo a few months ago and haven't gotten around to posting about it yet.  I figured today was a good time :).  Last May at Conner's preschool, they had an ice cream social.  It's the biggest fundraising night for his preschool and part of the event is a silent auction.  One of the gift cards up for auction was for a local tattoo shop.  David bid on it for me for my birthday, but I never actually went and got it done.  I realized I had it almost a year and was afraid it would expire, so I finally went in.  I had been putting it off because it is a really important tattoo for me, and I was afraid that the artist would mess it up.

I knew that I wanted to get the 3E symbol (Educate, Empower, Embrace, Love life) on my foot, along with the words "I'll Always Walk Slowly For You".  The 3E symbol is the International Symbol for Acceptance and I really love what it stands for.  I wanted to get the words "I'll Always Walk Slowly For You" for all of my kiddos, as my reminder to take life slowly, one step at a time.  To me, it represents not rushing Conner and Madi (and soon Ramya) through life. It's about holding Madi's hands when she's in her HKFOs, even though it takes more time, because that is how she feels more secure.  It's about taking life slowly, enjoying every minute of it with them, and seeing the beauty in the small things.

The tattoo artist did an awesome job and really took his time, making sure he did his best.  He had gone on our blog and knew how important it was to me and didn't want to make a mistake. It came out bigger than I expected so it's taken a while to get used to seeing something so large on my foot, but I really like how it turned out.  When I saw his design, I thought about getting it on my shoulder instead of my foot, because of the size, but really wanted it on my foot because of what it stands for.   It was hard to get a good picture of it, since it's on my foot and my foot is curved, but I tried :).  It looks much better/more professional in person.

 

 

 

 

 

P.S. If anyone is thinking of getting a tattoo on their foot, yup, it hurts :). I am proud to say I didn't cry though!

 

What's Up With Us

I realized I haven't really been on to write an update about us for a while, so here it goes!!

Madi had a renal ultrasound the other day and things look like they should.  Though one of her kidneys is still smaller than the other, they are both growing and looking good.  She goes in for another test soon to see if she still has renal reflux, and if so, if it is still a grade 5.  Lets pray it's not and it's improving, or better yet, GONE!  She's been working hard in therapy and at home and is such a little joy.  She is always smiling and laughing and is such a creative little girl.  Her latest antic was making a family of baby water balloons and carrying them around in a little purse, bringing them to t-ball, napping with them, and bringing them to our friend's house.  She was so proud of her family.  Conner has been dressing her up like a princess and it's really cute.  She's been really in to cutting and cuts everything in to a million little pieces.  We sure do love her!!

Conner had his last day of preschool on Thursday.  His next step will be homeschooling here with me.  I was always so sure I would never homeschool, but God has been working on my heart, and now I feel drawn to try.  I have my Master's Degree in Elementary Education, a reading endorsement, an SEI endorsement, and taught for four years, but I am still nervous :).  Conner, on the other hand, is excited to start.  I am looking around for curriculum and local co-ops so I feel prepared.  If anyone has any curriculum suggestions, please let me know!  Poor Conner had 3 cavities and had to get a silver cap on a tooth.  He did so great!  I read to him the whole time (they made him loopy with something he drank and the "snoopy nose") and he just relaxed.  He is now the proud owner of a 'bionicle tooth'.  It's in exactly the same place my silver tooth was when I was younger too.  He has been really in to building Legos and comes up with the most creative things.  He is a smart little cookie!  We are pretty darn in love with him too!

We are still waiting on our NOC (no objection certificate) to come to us from India.  Once we get that, it's court, apply for her passport, and travel.  We are so close but so far away!  We are praying we get our NOC by May 30th so our paperwork can go to court.  The courts are closed until May 30th anyway (the courts are on vacation in India from April 30th to May 30th), so it doesn't really matter if we get it before then anyway.

Well, that's it for now!  We hope to have more updates soon!

Peter Piper Fun

A HUGE thank you to everyone who came out and made our night so much fun!!  It was so nice to get to relax and chat with everyone, and we loved spending time with each and every one of you.  We earned $162.99 from the fundraiser, yeah!!!  Kelly, from Peter Piper (and our Church :)) said that normally the sales on a group that size would be about $400-$600 and our sales were $1086.58!  Team Ramya sure does love tokens and pizza :).  I didn't get pictures of everyone that came to our event, because I was too busy gabbing and playing games, but here are some photos from the night:

Join us tomorrow!

Tomorrow is our big Peter Piper Pizza day.  Come join us at the Peter Piper Pizza at 27th Ave. and Carefree Highway (2611 W. Carefree Highway Phoenix, AZ 85085) from 4pm until 9pm.  We will get 15% back from all of our sales, and you will get 10 free tokens with every purchase :).  We will bring extra fliers if you need one (you must give them the flyer for us to get credit, so just come find me before you purchase) and will also have our bracelets available.  We hope to see you there!