Friday, May 17, 2013

Make-A-Wish and More

July 2012





























 




Make-A-Wish dedicated their wheelchair accessible playground to Eliah on Saturday.  It was a big event! We had several Make-A-Wish representatives here, including the President and CEO of our state MAW organization, also the wonderful person responsible for making our wish happen, Jodi Papagakos.   In addition, Zaxby's Restaurant provided catering, and we even had an appearance by their mascot, LZ.  Their marketing company came from Florida to do interviews and film the entire event for use in a commercial and their training videos. We even had the local newspaper here to do an article on Eliah. The day was chaos from beginning to end, but I am so grateful for the love and attention shown to my family. What a special day indeed.

As far as the playground, it is so much more than I was hoping.  Everyone went above and beyond to donate and work on this project.  There's a platform swing that allows us to roll Eliah's wheelchair onto it and swing without having to take him out of his chair.  There's a water and sand table that is open underneath, so Eliah's wheelchair can pull right up to it.  A pergola shades the entire area so that the sunlight isn't too harsh on Eliah.  They even built an extra frame for another type of handicapped swing and a hanging bar for Natalie.  The whole thing is useful, tasteful, and completely amazing.
 
You will see by the photos how much Eliah and Natalie love their new playground.  Already having a handicapped accessible house, and now adding this accessible playground, makes me feel like all is right with the world, and my family is being taken care of in the most special and appropriate ways. We are able to relax and enjoy our environment because we know it's safe. We don't have the limitations here that we see every day in public.

In addition to the new playground, we have now been approved for a Private Duty Nurse.  Eliah's seizures have been increasing, so our needs have dictated the importance of having someone that can give him medications.  In time, we will be upgraded even further to a full time nurse.  Eliah has already been approved, but he is number 52 on a Critical waiting list.  With a nurse, I will be able to leave the house, which I have not been able to do up till this point. 

Eliah also had his first evaluation for school services this week.  We had a total of seven therapists/experts come to the house on Monday.  Eliah will most likely need home bound schooling and therapies, but we are excited that he will finally get back into Speech, Physical & Occupational therapies.  He hasn't had any (other than my own version) since he was kicked out in December for being too much of a liability.

The next step in that process is our first IEP meeting.  That should happen in the next six weeks.  All I have to do now is read a couple books, do a lot of research, and pray I'm ready to fight for what Eliah needs. 

Overall, there is major progress going on around here.  But as we push forward, Eliah pushes back with seizures, almost every two or three days.   It's a very tough balancing act to know when to push him to do more or take it easy, so we step lightly.  Speaking of stepping lightly.....

We have also found out that Eliah and Natalie's best friend, Molly (the five month old puppy), has a major heart condition and is only expected to live a couple more months, if that.  She has already begun the first stages of Congestive Heart Failure, so we are taking it very easy with her.  It's just another one of those circumstances that we cannot control, but we love the best we can, while we can, as heartbreaking as it may be.

The days are moving swiftly here, and there is movement at all times.  Sometimes I wonder if I'll ever catch up.  Ultimately, the most important thing, and I know I say this every time, is that my children are happy and loved.  But it's more obvious than ever now that it's not just family that loves them,  it's friends, it's the community, it's strangers from around the world, all coming together to do something special for my two amazing children.  I am moved.

Thank you all so very much.  I am forever grateful.

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