After nearly 6 weeks of waiting Jadon received his new stroller yesterday. It is an Easy S (stage 2) and it is really nice. The best feature that we have used so far is the high/low base. The seat removes from the stroller base and attaches to another base that we will only use inside the house. This base literally lowers to the ground or raises to the height of the kitchen counter.
Jadon got to help Mommy get the food ready for book club last night. It was so great to have him in a different environment than just the living room or his room. The base is on wheels and therefore we can roll him into any room in the house and even out on the deck.
Now we just need to get a minivan and we will be mobile. The stroller can actually be anchored in a van and act as the secure seating system. The plan is that we will have all of the needed equipment on the bottom shelf of the stroller and simply roll him in.
Looking for vans is no fun at all. I did find a heck of a deal on one but I had to wire the money and the van is in London…..but the shipping is paid for. RRRRrrrrrrrrrrright!
The search continues for a van but we are very excited to have the stroller.
370 days ago our dreams for Jadon were much like every parent with a two month old. We wanted him to grow up and be someone special. Not necessarily in the eyes of the world but in the eyes of the people that matter to him. We wanted him to have experiences like every kid.
We saw him climbing every thing he could, like Kristin did. I envisioned him jumping his bike into the side of the house and skinning his knee and bruising his head, like I did. (I know, that explains a lot) We envisioned ourselves watching from our office window as he dragged his book bag home from the elementary school across the street. I expected that call from the principal when he snapped some poor girl’s bra strap. We saw him graduating high school and hopefully going on to college. We saw a young man that we would be proud of no matter how he turned out.
We are so very proud of him right now.
One year ago today the test results came back confirming that Jadon has SMA type 1. Our lives were turned upside down and our dreams were shattered. Our “normal” was gone and replaced by something that we are still trying to figure out. The one thing that I am certain of is that he has changed our lives forever. Forever he has changed us for the better.
Things around here are not always smiles and laughter, but the fact that he is able to smile and laugh after everything he has to go through, shows me that I have nothing to complain about. It is amazing the things that I have complained about in my life that just don’t matter. We are truly living every single day for the moment.
I truly don’t know how we would have made it without the support we have received from our family, friends and sometimes complete strangers. We have been continually overwhelmed at everyones generosity. I still don’t know how to truly say thank you loud enough or strong enough, but I only know to keep on saying it. Thank you, Thank you, Thank you.
Today we are trying reverse psychology on Jadon. Kristin told him to “have a whole bunch of episodes today”. Every morning she has been telling him to not have any, and he has done just the opposite. We will see how this works. He is on his first Bipap nap at 9:00 and we are episode free so far.
We have also decided that I will hang out with him all day. We have been trying to have the new nurse (nurse Cheryl) do as much as possible. The intent was that she would be able to do everything with him all day and then I could go back to work for a couple of days a week. We have given up on this plan for now.
This morning we just hung out and read some books (including the new books from cousin Mark) and listened to the news. It was much more relaxing than yesterday morning. He rests peacefully right now.
Jadon has figured out how to get our attention. He holds his breathe. This action is pretty typical for a one year old but the problem is that because of the SMA he is not strong enough to bring himself out of it. We are then forced to do coughs and bipap in order to get his numbers back up. This is not very much fun at all.
He currently is not letting anyone other than Mommy or Daddy take care of him which doesn’t work very well when we are trying to train a new nurse. The alarm seems to be going off all day long today.
The Briggs (My Mom’s side of the family) have a family reunion every two years, which we were unfortunately not able to attend this year. I got an email that said “pictures from the reunion” and I fully anticipated seeing pictures of my cousins wrestling or my aunts dancing on a bar. You know typical reunion stuff (not really).
Instead I got this! It was a complete surprise and it brought me to tears that they were honoring Jadon and also building awareness for SMA.
I was in tears again when I learned that there was money involved as well. They raised over $900 that day. This is just over whelming; another example of incredible people doing incredible things.
Thank you to all of the Briggs Family!!!!
posted by Tony
Daddy got a new wristband. Notice the space between the “CURE” and “SMA”. That is so I can go back later and add a “D”. There are several promising research studies going right now that are trying to get approval for human trials. We believe that one of these truly could be the cure for SMA. How exciting would that be to cure a disease. We will see it happen, I believe that.