Prayers for Evie

Please continue to pray for my friend Jaime and her daughter Evie (I previously posted their story here... http://www.aworthyjourney.com/2014/10/beautiful-evelyn-needs-our-prayers.html...) as they are discharged from the hospital tomorrow.  Evie still has a long road of recovery ahead of her.  They will stay in a nearby hotel until the last of Evie's follow-up appointments is complete, which is at the end of October.

Evie didn't pass her swallow study and is currently fed via an NG tube.  In addition to the hotel fees they will be facing (the hospital housing has no openings and the Ronald McDonald house is only for oncology patients), there are now more equipment rental fees since they are out of state and cannot get equipment and supplies from their normal supplier.  They can get reimbursed for equipment and supplies, but have to pay up front. 

I would LOVE to be able to bless their family with the amount they need for hotel.  If you $5 to spare today, please consider giving to help them with their medical costs.  Thank you!! 

 http://www.gofundme.com/fakzyk

Madi talks to Siri... This is What Spina Bifida Looks Like

Most of the time, this is what spina bifida looks like for us... enough said!

 

Madi Dancing in Her HKFOs using her Rifton Dynamic Stander... Spina Bifida Can't Slow Her Down!

Madi loves to dance and often puts on "performances" for us.  She's loving her new stander and wanted to try it forward facing.  That, of course, lead to a dance performance.  Today it was "Let it Go" from Frozen.  This girl is just too cute!!  When the doctors told me all the things she wouldn't do, they forgot to mention that none of it would matter because of how amazing she would be :).

 

Our Spina Bifida Awareness this Month

For those of you who are my facebook friends, you may have noticed I've been posting daily pictures to facebook of my gals who rock spina bifida.  You  may have looked at my photos and said to yourself, "Why is she posting these?  There is nothing special about these photos!". 

And you are right!  That is the point!

Yes, my girls have spina bifida, and yes, sometimes life requires some creativity, but the point of my pictures is that most of our days probably look so much like "normal" lives.  We play, we get dirty, we learn, we eat, we go on vacation, we have little adventures, we swim, we bike ride, and the list goes on and on.  Sure, we do those "other" things like therapy and cathing, appointments and surgeries, and sure, the girls do many activities while zooming instead of walking, but the point is that they still do them.

Sometimes I feel that others focus on what we do differently, when the fact is, much of what we do is the same! 

Here are a few "boring" photos of us from this past year, just living our lives, because spina bifida doesn't mean life stops for us.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Beautiful Evelyn Needs Our Prayers!

A little over a year ago I heard about a beautiful little girl with spina bifida needing an adoptive family.  Though I would have loved if we could be her family, I knew it couldn't be us as we had just brought Ramya home.  I started sharing her story and trying to advocate for her.  Then, she just kind of disappeared.  Many months later, I got a call from my friend Jaime.  Before I tell you that part of the story, though, let me tell you the back story on Jaime. 

Jaime and I went to the same school but hadn't seen each others in years.  We re-connected through a mutual friend because we both were adopting internationally at the same time.  She just so happens to live close and even shares the same birth date as me!  They had been trying to adopt an amazing little boy from Russia and were so very close.... and then Russia closed it's doors to adoptions to the US.  They were (understandably!!) devastated.  They had gone and met him, he was theirs, and they loved him.  They tried everything they could within their power to find a way to bring him home, but there was just nothing that they could do. 

One day, Jaime's family got a call about a little girl needing to be adopted.  She just so happened to have spina bifida.  Jaime called me and over the course of the next few days/weeks, we spent a lot of time on the phone talking about specialists, day-to-day care, Evie's specific needs, etc...  Finally I realized it was the same little girl I had advocated for months before!  Wow!  There is a long back-story there as to why she came back up for adoption, but Jaime's family was just the family I had been praying for all of those months... dedicated, loving, kind, patient, amazing advocators that would never give up.  They were perfect for each other.

I'm telling you this story because sweet Evie is struggling with her health right now and needs your prayers.  She is in need of a decompression surgery, but she is a very complex case.  The neurosurgeons in Arizona had not done decompressions as complicated as hers before, so Evie and her family went to see Dr. Warf in Boston for another opinion.  It was decided that Dr. Warf would do the decompression surgery later this month.

Sweet Evie has been really struggling since getting home from Boston.  She was very fussy, cried a lot, and was just not herself.  They ruled out everything they could and couldn't find a cause. Jaime called Dr. Warf and it was decided they would bump up Evie's surgery date.  Yesterday at 5:30 am Jaime got a call that she needs to come to Boston THAT DAY.  They were worried about Evie and needed to run some tests and needed her there ASAP.  Life was thrown in to a whirlwind, but they got there and are there right now.  Jaime was not able to bring all 4 children, as she needs to care for Evie during surgery, so Jason, her husband, flew with her to get them settled and there safely, and then came home to care for their other 3 children. 

Please be praying for Evie as she undergoes decompression surgery.  Because her Chiari goes down so low, and because she's a complex case, we are praying she does not lose any function from the surgery, but will see big improvements in her health. 

If you would like to help Evie's family I have set up a Go Fund Me page.  Being out of state for medical care is never easy and the financial strain it can cause is something a family should never have to go through when they have so much else going on in their lives.  I would like to bless their family in a tangible way and help take away some of their stress.  Their page is http://www.gofundme.com/fakzyk. 

Thank you so much for your prayers!!  I will keep you updated on sweet Evie and how she is doing.  You can also wear red, Evie's favorite color, as a reminder to pray for her. 
 

Fun on the Beach

We are a beach family, so going to California means LOTS of beach time!!  The girls prefer to build castles and moats and let their toes touch the water.  Conner prefers to be in the water the whole time and boogie board.  They all have a blast though!  Here are some beach pictures from our trip....

 

Getting our "tootsie toes" in the water

 

Where my feet are happiest....