Thursday, November 8, 2012

Package Surprise

We are in the middle of battling the second illness of the season with both boys. I'm again frustrated as my lack of leniency with washing your hands upon entry rule is likely what caused this recent bought of sickness in my household. I'm always worried that I'll offend a therapist, professional or visitor by asking them to wash hands or make a point to remind them we don't accept ill visitors - but not anymore my backbone just got super tough after this last time. If you're offended then you don't have respect for me as a special needs parent who's working really hard to take the very best care of Noah. Surprisingly Noah is coming through this rather well, while his little brother hasn't been as lucky.

Yesterday was filled with some really great news, Noah's Hi-Lo Base chair was approved. I had all but almost thrown in the towel thinking it would either be flat out denied, and that I'd be unsuccessful in appealing. It will still take some time as it's now on order - but it's in the near future, and Chris and I are so relieved. Finally more feeding safety for Noah - we might even be able to progress to eating solids with better positioning. And he can now be on Luke's level since he'll now have seating that will lower to the ground. Which is going to be so nice for him. It's almost so exciting that I feel like I need to make a party cake!

 Now for the freaky news:
 After a few months of back and forth correspondence with Freedom Concepts and one of Noah's therapists to try to trouble shoot how to make his bike actually fit him and be customized to his needs without having about to fork over a few more thousand to do so, Freedom agreed to give Noah a smaller seat. There are still items like a neoprene lap belt and other accessories that I feel Noah needs but we simply don't have the money they want out of pocket to get those things for Noah. I was hopeful this might be a band-aid fix, although I know we have a long way to go to get this bike where Noah needs it to be for him, until the parts arrived today. Imagine my surprise when I answered the door to UPS to find that Noah's seat part was shipped in a box used to ship herbicide/poison. No joke.
Herbicide/Poison Box Used to Ship Spare Parts

It's unbelievable that Freedom Concepts would think it was appropriate to ship anything to a medically fragile child using a herbicide/poison box. Shoot it's inappropriate to send anything to a any child in a poison box. With all I've been through with this company over the past year I'm not sure I can recommend them to any special needs family. Very bad judgement on their part. To say the least the box remains unopened in my foyer because I really don't want to go near it. There never seems to be a dull moment in the land of special needs. Just when you think you've seen and dealt with it all. I of course have contacted the company but I'm not sure what their response or correction to this new problem will be. But this simply is not okay.

"What gives me the most hope everyday is God's grace; knowing that his grace is going to give me the strength for whatever I face, knowing that nothing is a surprise to God." Rick Warren


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.