Spring Update

The Denver Adventure

So our trip started off trying to beat the unpredictable snow that spring in Colorado brings. On our way over a mountain pass, we came onto the scene of an overturned semi truck. We stopped and helped the driver and passenger. Roy cut her seat belt, broke the window and pulled her out. Another passer by stopped and helped pull the husband out of the crushed cab, both survived.  So needless to say this started our trip out with a shakeup.

Trip:

We arrived in Denver, tried and cramped. Ready to rest and prepare. Jaden and I hung out in our make sift home for a week, yeah casa Best Western.  Daddy and Micah went down for a swim, dinner and bed for us all. We awake 2 hours later to the sound of Micah crashing to the floor.  Nothing more than thud! No crying even, daddy scoops him up and does a sleepy check over. Seemingly fine, we lay down. Micah whines about his toe, we hit the lights, pull the footie jimmies off and find a bloody mess of a toe. Freaked out, child hurt, not at home and snowing like crazy outside; I throw on shoes and run out of the hotel with Micah in tote, wrapped in a blanket and daddy left standing in the room, all the while a peacefully sleeping Jaden never knows the difference.  No stitches for the toe, needless to say no more swimming either.  One unplanned visit to Children’s Hospital down three more planned to go.

Jaden:

So Jaden’s news is good. Neurosurgery, Neurology and Muscle Rehabilitation all agree slow progress for Jaden.  Our message to come home is keep doing what we are doing!   After our next three moth visit, we are cleared to move visits to every 6 months, god willing Jaden keeps making slow progress.  On the therapy front, we have turned a new page so to speak. We have not given up on crawling and rolling but it is time that we start working on walking, slowly working on learning how to stand up, so with new information and techniques we progress slowly. 

Networking:

After appearing in the news paper, I have been working full steam ahead towards organizing a support group here in Durango. The feedback I have gotten has been awesome.  I feel like I have another full time job speaking with other parents and networking with people whose lives have been touched in similar ways. 

Mommy’s Fear:

The fear of knowing everyday that my child could become sick and need a shunt revision has been hitting me hard these last few weeks. I feel like I can never let go and just feel like everything is ok. I feel like if I do, something is going to happen to Jaden.  How do we as parents deal with this stress every day?

Medical:

And here we are to one of the largest catch 22’s I have come across yet.  Jaden was found medically eligible for SSI benefits. The catch? We are over income to get any help from this. However I am looking at this in a positive way. When Jaden had RSV in February, we each missed a week of work. This puts us under the income cap for one month, allowing them to pay a small amount. The awesome part of this is because we did qualify for this- Jaden is Medicaid eligible. In a rushed conversation with a government case worker, we were also disqualified because for some reason it matters how much money we have in our bank account on the last day of the month.  Well it just so happens that Roy gets paid once a month and I will give you three guesses at which day it posts and the first two don’t count.  So, the money would be helpful, but having the secondary insurance is HUGE for us! Help is help and I am grateful.

I will be posting updates soon, Thanks for taking time to read our story and remember never to take the simple things in life for granted.

Love and Health,

Jaden’s Mommy