Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Tuesday, November 10, 2009

Jessi Singing and Decisions…

This is a low quality video of our Jessi singing to Bella.  This is Bella’s song from Songs of Love.  We think it’s sweet – and right on with her sweet personality.

Jason and I have some decisions to make.  After much paperwork and the nursing home stay, Bella qualified for MDCP (Medically Dependent Children’s Program).  It gives us more nursing hours and a certain amount of money for home modifications.  We are grateful for the nursing hours.  Our nurses are life-savers and I am grateful to have them.  I am grateful for the money for the home modifications, but we aren’t sure what to do.  Bella’s room was our formal dining room.   We want to add doors to her room for privacy.  The paramedics have asked for a sidewalk.  As they carry the gurney out to the ambulance, they have to walk over our pavers and some tree roots.  For safety we will do that.  But what else?  Unfortunately, this is a one time shot.  We have to do everything right now.  We can’t do some things and then in a couple of years, do more.    Well, I guess we could, but we would be paying for it from our own pockets.  Today I talked with her nurse, her therapist, and the contractor who specializes in remodels for those with disabilities.  If only we had a crystal ball….will she need a roll in shower?  Or will she become mobile?  Today, she will not tolerate weight on her legs at all.  If you pick her up, her little legs curl up like frog legs.  Will she get off the vent?  Today we are desating again.   Hmm…I just don’t know whether or not to try and add some handicapped accessible facilities to our house.  The contractor said to also keep in mind resell value.  If we start adding random showers and closets to rooms, how will we ever sell?  Not that I see us ever leaving, but….   And what if this coming summer she suddenly gets better?  Then I don’t need any of it.  Sigh…I need a crystal ball.  :)  What a blessing that this program exists.  Even if there is stress, I am grateful for this opportunity!

6 comments:

Lacey said...

Wow, what program is that? I think you should add what she may need if she was totally dependant. I don't think it will hurt the resale value, extra bathrooms never hurt. You need to be prepared for the unexpected, expecially if someone else is paying.
Jax doesn't tolerate weight on his legs either, and he'll be 4 in a couple of weeks. Although he is a brain injury kid, he won't put weight on them at all.

Lacey said...

Oh and that video is so sweet. And seriously, a couple of times close to the end, Bella is making the i love you sign with her hand.
Also, a questions, are your nurses there when your home? We now have nursing care because he's trached, and I'm not used to having them. I feel wierd with them in my home.

Stephanie said...

You might want to think about installing a generator that would power the medical eqipment and fridge. We had to use our for electrical, but if I could do it over I would have installed a back-up power source too. :)

Steph and Christopher

Michelle said...

Here is my suggestion...make a list of all the possible changes, additions, etc. then pray about it, fast and it will come to you. None of us know what the future will hold for our little one's but someone does and He'll guide you!

debra said...

Shelly, I was thinking about Mandy and when she was in a wheelchair. Bella may be absolutely mobile with no special needs but she may never walk also. I remember the problem with getting Mandy into a bathroom - any bathroom. You need to have one in your house that is wheelchair accessible with some kind of shower also. Just a thought.

My name is Sarah said...

This is Joyce. Oh I hate this one time only stuff. But then again, one must be grateful when money does come. I fully agree with Debra. Bathing is still a challenge with Sarah. She just cannot get the shampoo rinsed out of her hair properly and standing for long times can be hard for her. I wish I had a shower that would accomodate wheeling in if we should need it, a bench for her to sit down and room for a caregiver to assist.