Tuesday, March 22, 2011

What a Day!!

It's been a day of WOW.  The day began with a grassroots cookie selling fundraiser!  It has ended with donations coming in from all over the world and a donation page, plus more in the mail. 

We have had to switch DME's due to insurance today.  This was a mess.  Paperwork is mostly done but now the logistics of having to switch over a whole lot of equipment and supplies and information.
We've fielded phone calls galore dealing with Eli's flights to Atlanta.  There is more paperwork than I could have ever imagined.  So many things need done and so many approvals.  We are unsure if it's going to all get done on time.  The doctor missed 1 little box on the form and oxygen details on his typed letter.  So we have to start all over again.  Unsure if we will get it done in time.  We may end up having to travel which means 2 days of driving EACH way, and extra nights of hotels.  Not something we are looking forward to.
There was a point today where we thought we may have to cancel the entire Atlanta trip, atleast reschedule.  An unexpected upfront cost came up with the surgery center that we hadn't expected and hadn't budgetted for.  A dear friend of the families heard about it and within an hr she had personally paid 20% of his surgery fees that were left after surgery.  We again don't have the words to describe how absolutely blessed we feel.  The love and support and encouragement from people all over the world is definitely felt right here in our home.

This afternoon Eli finally had his seating appt.  We were there for 2 1/2 hrs.  Every drop of his body was measured and he spent time trying out different wheelchairs.  When he set in the Tripod we knew it was the perfect one, the one we would pick.  So it's official.  His very 1st wheelchair has been ordered.  He is getting it in orange to match his house color!  Perfectly fitting.
TriPod  Eli's will of course be way smaller, and the pieces that are blue will be orange.

I am overwhelmed right now.   Everything is moving so fast, scary fast.  My little man is growing, we are seeing the age changes in him.  Sometimes I look at him and am amazed at how big he's getting.  Then I watch him take a few crawls and get so tired he has to lay down and take a rest before he can do it again.  He was rolling and crawling a bit at seating clinic today, and I watched as he got so tired, his face bright red, his hair soaked in sweat, his breathing becoming so labored.  All from rolling a few times and making a total of maybe 10 crawls over 45 minutes.  It breaks my heart to watch my little man so determined, the sparkle in his eyes as he wants to so badly.  He wants to go, he wants to do it, but his body just can't keep up.  I'm so excited for his wheelchair to be in in a few weeks, but I can't believe I'm here, that I'm doing this.  My son is getting a wheelchair.  One of the factors on what I picked is how I can configure all of his medical equipment on his wheelchair.  They therapists and specialists chatted about how they hoped this wheelchair is hoped to last him until he's 3 and at that point we will move onto a powered wheelchair as he will probalby never have the strength to push himself around.  I listened to her talking to me about needing to wheelchair proof my house, and all the modifications we will need to make over the next 2 years. 

It terrifies me to the point of panic sometimes to think that this is my life.  This is truely my life.  My son will never be what I had imagined he would be.  He will never be able to do the things other little ones get to do.  Each new piece of equipment tells me more and more how life is shattering around my tiny little man.  Yet he smiles and laughs and plays peek-a-boo and tried his hardest to chase his sister as she passes thru his play room.  He doesn't realize it's not how it's supposed to be, and that alone breaks my heart.

He is special, and amazing and the things I have learned from him will be forever a part of me, as he has changed me, more than I could have ever imagined.

"Children with disabilities are like butterflies with a broken wing. They are just as beautiful as all others, they just need help to spread their wings..."

Last but not least you can donate on Eli's page at Eli's Fundraising Page

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