The medical supply company is coming out on Monday to switch out the big portable oxygen tanks with the more compact sizes that we can refill and carry on a backpack when we go out. Thank goodness! Honestly, I couldn’t see carrying around a big tank like that “just in case” every where we went. Although, I do think we will bring one with us on long driving trips as a better safe than sorry, but that will be in the car with us.
We have our date scheduled for Hannah’s nursing home stay to satisfy her requirement for the MDCP (medically dependent children’s program) so that we will have access to Medicaid, respite services, etc. December 22nd. We have to be there in the early afternoon, and we get discharged in the morning of the 23rd. Yep, the day before Christmas eve. I chose that date because the kids will be home from school. Also, since they won’t be staying at the nursing home with me and Hannah, the kids and Daddy can have some fun in a new town that night. Fortunately, we get two-hour leave passes a couple of times during the day, so we aren’t required to spend the entire day there, just the overnight.
It really sucks about having to think about putting Hannah in a nursing home overnight. It is a regular nursing home facility with a wing for pediatric patients. I’ve heard from two parents who have stayed there now to fulfill this requirement, and they both say it is just something you go through, get it down, and it is over. They both said it isn’t the worst nursing facility they have seen, but…
Yesterday we were looking through Ethan’s first scrapbook I made him when he was about 18 months old. He was holding a spoon by then, running around, playing catch, talking, coloring. Then I looked at Hannah who still has the cognitive and communication of an 8-month-old to an 11-month-old with very little progress in the past four months.
Being hit with her delays again as well as dealing with oxygen tanks and this nursing home thing… it is just a stark slap-in-the-face reality check of this crappy disease.
**Hug** I am glad they were able to come up with a more portable oxygen option for Hannah. As always, we hope she won’t need it, but it is simultaneously great and sucks that you need to have it “just in case”. I hope the MDCP will get Hannah and your family the help you all deserve soon.
.-= Cristina´s last blog ..A History of Bertrand =-.
I hope it serves its purpose. {{hugs}}
I know it sucks. I wish I could change things for you.
We are praying for you! You are wonderful parents! GOD BLESS!
Yea it really is terrible that you have to do that to “FULFILL THE REQUIREMENTS” but you know what GO WITH IT as you do with everything else that you do and and we hope and pray that things will get better for you guys as far as getting in the system for HELP that you need! Sucks that it has to be this way tho1
Glad that you are getting a PORTABLE oxygen for Hannah!!
Keep your chin up and as always we pray for you all everyday!!
I’ve never heard of this sort of requirement before.
Portable oxygen is a good thing.
You are an amazing Mom. And I love the idea of getting all the crappy stuff done and LEFT in 2009.
*smooch*