Archives for April 2011

I was talking with a good friend of mine recently, more like venting actually, at how much it hurts that we can’t provide Hannah with the therapy and mobility equipment that we feel she would benefit from.  For whatever reason, special needs and therapy equipment seem 5x more expensive than they should be!

She suggested that we set up a medical fund account so that those people who have offered to help us (whom we have declined) can actually help us get Hannah what she needs.  So I met with our Wells Fargo rep, and we decided to go ahead and do it.

It is set up so that any person or company who donates money to this fund is eligible for a tax deduction on their donation.  Any money that we do receive from this will go specifically to getting Hannah what she needs to have a better quality and (hopefully) a longer life as well as covering those medications and therapies that our insurance/medicaid will not cover.

Those that know me know I hate asking for help, so I will only likely post about this once in a very great while.  But here are the details:

Hannah Ostrea Medical Fund
c/o Wells Fargo Bank
640 South Green Valley Parkway
Henderson, Nevada 89052

For those of you who have offered to help us over the past 9 months, thank you so very much, and thank you for your patience with me!  It is so hard to accept help sometimes, but I need to forget my pride and do what I can to keep Hannah with us as long as possible.

We lost one of our favorite nurses this week.  She had been with us since Hannah was released from the hospital back in July 2010.

She has always been so wonderful with Hannah.  You could see there was a real connection there between them.  Even Ethan and Abigail enjoyed her company.

However, these past few months she had called out more than she had shown up for work.   It was proving very difficult because it was always a rush for our agency to find us someone new, and more distressing was that Hannah was constantly having to have new nurses show up.   When we have a new nurse, there is always an adjustment period, and we can’t go on about our daily lives because of this period.

Yesterday, however, she didn’t show up for her shift at all.  Not a text or a phone call saying she would be late.  Our agency never heard from her (although this was common).  Two weeks in a row she left us hanging without a nurse, and the timing of all of this could not be worse with Daddy having quite a few out-of-town trips for work during the next three weeks.   Today I had to stay up almost 28 hours because she wasn’t there and Daddy had to go to an event for his work.

I know she was going through some personal issues, but we finally had to agree with our agency that it was time to let her go.   We can’t keep throwing new nurses at Hannah, and we also need reliability to know that when we have a nurse scheduled that she will be there.    Having a nurse miss 15+ shifts out of almost 40+ is just too much.   We put up with it because we really cared about her and how good she was with Hannah.

We are going to miss her terribly, and I honestly have no ill will towards her.   Because she had spent so much time with us over the past 9 months, she felt like she was a member of our family.   She was so good with Hannah, so good with all of us.  When we told Abby and Ethan about it, Abby got really sad for a bit.  She got attached to her too.

But it is time to move on.  Our Monday-only nurse has agreed to take on more days to help cover this gap, which is a huge relief because she also is very good with Hannah.   But I’m not sure how it is all going to come together.

I just hope we can get back into a routine where our nurses predictably show up so once we move I can work on getting my life in order, get away from the chaos we have been living in for the past few months.