..we were working on standing.

Bebe was working with her Physical Therapist the other day and she was working on standing.  Her Physical Therapist would press slightly down on B's hips to plant her heels down on the ground.  Bebe did so amazingly and would stand on her own for a good 4 seconds.  So, when Chad got home (about 1/2 way through the session), we wanted to show him how well B had done.  So, her Physical Therapist was showing Chad the technique and all she took her hands off of Bebe's hips.  To which, B decided to take like 3 steps towards Chad all on her own.  We all just sat there wide eyed.  FIRST STEPS, SERIOUSLY!!!  So, her Physical Therapist was like "We were working on standing, but if you wanna walk....."  It was so funny & so sweet that Chad & I were both there for her first official steps.  I am so very proud of her.  We continued to work on it & are still working on it.  She is standing better and better & we know she'll be off and running soon enough.  That kid is amazing.  Her Physical Therapist suggested we get some good supportive running-style shoe to help her pronation (her little inner ankles were almost touching the ground when she stood).  You can see the picture below of her "big girl shoes".  It took her a few days to get used to them, but now she loves them.  Good thing, since she has to wear them like all the time.  :)  

Also, when we went back to the doctor, we verified that she hasn't really gained weight since November.  She is still holding strong at 14lbs.  So, we will be going to see a pediatric Gastrointerologist and a Nutritionist.  Since her sweet little heart is all better, I'm ready to dose this kid up with some calories!  She is still eating, which is sort of a miracle in itself (many WHS kids have PegTubes).  We will see what they say about it. 

We also have decided to participate in the Walk Without Limits Walk to help support United Cerebral Palsy of Birmingham.  Although Bebe does not have Cerebral Palsy, UCP Birmingham facilitates "Hand in Hand" (http://www.ucpbham.com/our-programs/hand-in-hand.html), which is B's Early Intervention Program.  They provide Bebe with in-home Physical Therapy, Occupational Therapy & Speech Therapy at no out of pocket cost to us.  I can not really express how important this is to us, since precious children with special needs tend to have so many medical bills.  Without this program, I am unsure of how much therapy we could actually provide for her.  Hand in Hand bills the insurance and UCP's funding continues to provide services to us when insurance stops paying these services (there are generally very specific and narrow limitations to therapies under most insurance plans).  B has been in the Hand in Hand program for an entire year and has truly been an integral part of Bebe's ongoing developmental successful.  They help teach us how to most effectively teach her.  I understand that many state budgets are being cut, which appear to be filtering down to this amazing program. 

If you feel led to help support our efforts, please visit our fundraisting page at http://www.firstgiving.com/fundraiser/bevynmaple/race-without-limits.  Also, if you'd like to walk with us---PLEASE let me know.  We would LOVE LOVE LOVE to have you with us! 

Thank you all for the prayers & support.

..let the blogging begin.

Well, here we are.  I finally started a blog to chart the amazing journey we are walking through.  As you can see, I have pulled all the old posts that I had listed on Facebook over to the blog.  I definitely feel excited about being able to share our journey and our walk with others.  And to be quite honest, it's sort of therapeutic for me.  I know we are not just walking through this for us, it is for others too.  So, let me sort of catch everyone up to date. 


Spiritually: Chad & I are coming together for what we are calling "our crazy prayer".  We are praying for full & complete healing of Bebe.  Head to toe, inside and out, whole and complete.  It sounds crazy, we realize.  But, it's not too big for God.  So, hey, why not just go ahead & believe in something that can ONLY be done by God.  So, we are not only praying, we are believing.  And if His plan is even BIGGER than just a mere healing---that's good too.  Ultimately, He has some sort of plan for B.  I can't wait to see it all unfold. 


Medically:  We have a wealth of doctors now on board to face the medical side of the syndrome.  We, of course, have her pediatrician.  We don't see her much more than the average child, except for this time of year.  Bebe gets a Synagis shot each month.  Synagis is also what you may hear me refer to as her "platinum shot".  That would be because each month's dose is about $2,000.00.  Yes, you read that correctly.  Thankfully, she only has to have it about 5 months a year.  Synagis helps her body combat RSV.  If she were to get RSV, the shot would help make her case less severe.  Last year & this year, RSV could be fatal for B.  So, we get this shot to keep her a little safer.  Next, we have been put out to about every 9 months with her Cardiologist.  That is down from about every 1-3 months.  Since the surgery was so successful, they feel we can back off follow up visits.  We also have a geneticist on board.  He seemed extremely pleased by how well she was doing & her overall strength.  He set us up with a Neurologist and an Endocrinologist.  We will see them in the summer.  He also explained that one of the biggest fatal complications with WHS (Wolf Hirschhorn) has to do with renal issues.  So, he set Bebe up for a renal ultrasound.  The ultrasound showed "some bright spots".  Because of this, they want us to follow up with a Neurologist.  They said they did a little research and found another little girl with WHS who also showed these "bright spots" in her ultrasound.  They followed her & found that by about 5 years old, the spots had completely gone away.  She had no renal issues.  So, we are just praying that whatever these "bright spots" are (which my dad calls her fairy dust) going to just disappear.  God can do it, no biggie.  The way we view it, we don't mind getting new doctors on board.  We view it as a bigger audience to watch what God has in store.  So, bring em on!  Let's see.....I think that is all of our medical team.  The ones we have met already are great.  They all have a similar pleasant surprise to them as they watch B flourish.  Her pediatrician is a believer already, and so I think she REALLY understands that it is all God---to HIM be ALL the glory!  And we thank Him for our fantastic medical team to help us out. 


Developmentally:  We are now working with physical therapy, occupational therapy & speech therapy.  We have the great opportunity to work with "Hand in Hand" and they are simply amazing.  Bebe learned to sit on her own by 11 months, she is standing for a few seconds by herself, she is instigating attempting to walk, she is babbling & jabbering......she really is remarkable.  WHS is quite broad spectrum and all the amazing people with WHS are different.  There are WHS folks who are unable to speak or walk, there are WHS folks that are able to speak in short sentences & help with daily functions.  Heck, even "average" children's learning rates are quite different.    So, it is similar in the "special needs" arena, as well.  I am encouraged that B is really progressing & becoming more "present" every day.  The first year, she was quite disconnected from the world.  At home & with family, she would open a little.  But, she has really come out of her shell.  We are so encouraged by her fabulous progress.  There is just no telling how much Bebe is going to end up being able to do. 


Life: Life is challenging & busy.  But, that little one is so worth it.  I guess it just feels like life as usual.  We don't really know any other way.  When we are overwhelmed, God always finds a way to encourage us.  We are so very blessed.  Sometimes I almost can't contain my emotions about it.  I am so proud of B & I am so excited about what God has done and is GOING to do........can hardly contain it!