This and That

Hi again.  Hope your weather is as beautiful as ours is today.

It has been a busy couple weeks as usual.  We are trying to find our groove with school schedules and therapy schedules and work demands.  I think we are getting there slowly.  It all just takes time.

The weekend before last, we had the opportunity to tour the Lucas Oil Stadium, new home of our Indianapolis Colts. Thanks to a generous co-worker of mine who shared some tickets with us...we enjoyed the time together and the chance to spend the day downtown.  It was very exciting to see the new stadium and to see so many other people excited too.  I've included these pictures so you can see it too.  It really is cool...would love to be able to take Caiden to a game there someday.  He had a good time checking the place out.  Say it with me now...GO COLTS!!!
 

    

 

Avery continues to progress.  We started with private PT today and we are so excited about it!  While we miss First Steps and our therapists, this is a new chapter and we are excited about the possibilities.  Avery's new PT, Ellie, is FANTASTIC with her.  She worked her very hard today, which is what she needs, yet she was so very calming and loving with her.  As Avery's Mom, there is nothing more I could ask for.  Once we begin seeing Ellie twice a week, I have no doubt that big changes are gonna come and Avery is going to make some more great progress in her gross motor skills.   To that end, I have also placed her on the waiting list for Hippotherapy.  We have heard so many great things about this therapy and we are anxious to get started with it too.  Please pray that a slot becomes available soon and that it will work with our schedule to take it.  We have also scheduled an evaluation with an OT that specializes in feeding and oral motor therapy.  We are very excited to be getting to work with her!  Please pray for her to have the wisdom and skills to help our Avery keep progressing in this area too.  And pray that we will be able to afford to have her on our team, as she is a private pay therapist right now.  We are willing to "pay" to have one of the best...not to mention the comfort and convenience of her coming to our home instead of having one more appt. to travel to.  Next on our list is to get Speech therapy lined up and to get a nutritionist to follow Avery and help us move to a blended diet instead of the mass produced formula she is on.  I can't help but believe that she would do so much better on a diet of real foods (blended to be put down the G-tube) than any of the formulas produced for G-tube feedings...especially from a GI and vomiting stand-point.  We certainly know it will be more work...but worth it in the end???...we hope.  We need the help of a nutritionist though to make sure we are getting all the nutrients that she needs into the diet and to make sure she keeps gaining weight and growing.  We also have to get on the schedule for vision therapy with our former First Steps therapist.  Thank goodness...she also does private work and bills insurance.  She has already done such great work with Avery through First Steps and we can't wait to continue that.  Right now, we are STILL waiting on various equipment to arrive...some of it ordered long ago. I will never understand why it truly takes so long to get some of these things!  Our children could be making more progress and gaining more skills in that time, yet they are held in this holding pattern by all the red tape.  Yet to arrive are her pediatric wheelchair (though it looks like an adapted stroller), her Tumbleforms Tri-Stander, her augmentive communications devices, and her new bath seat/support.   Then, we need to start working on the other items we still need to get. 

It is most definitely always ongoing work and follow-through for her needs, as well as ours. Can you believe I spent 3 entire hours on the phone last Friday just making and rescheduling appointments (medical, eye, teeth and therapy) for her and for Jon, Caiden and I.  Mind boggling and exhausting to boot.  Anthem isn't going to like us much in the next few months!  Between eye exams (all of us), dental exams (all of us) and the many medical appts., we keep chugging along and trying to find "fun" time as a family.  It's harder some days than others, but we somehow make it work most of the time.  What more can we ask for really?  God is so very good to us and we are so thankful to have all these resources and skilled doctors to help Avery and the rest of us and for all the friends and family who continue to support us emotionally, spiritually and physically.

Thanks for checking in on us again.  I hope your week is good and that you get the chance to enjoy some great times with your own families.  

God bless!

Holly

Comments

[Cris and Kristi]

Hi Holly,

You guys continue to do amazing thigs, and keep a great attitude. You are an inspiration to us in everything that you do.

I'll be talking to you again real soon.

Cris