Thursday, February 26, 2009


There are so many things happening these days.

Photo by Tina Guiomar

Nestor is still in LA. Making the best of a slow pilot season.

Amelia is moving closer and closer to beginning school. We are putting the finishing touches on her paperwork. As it turns out, rather than getting into a long drawn out fight with the Board of Education over providing a nurse for Amelia during the school day, her new school, Roosevelt, stepped up. As it turns out, there is a little boy, similar to Amelia -- g-tube fed, suctioning, nebulizer treatments, etc. His family is going through the same process as us. They are neck in neck to start school. Roosevelt looked into their budget and decided that they are going to hire an LPN for Amelia and this other boy. The two will be in the same classroom of 6 children and the LPN will be there just for the two of them. It's like having a huge gift put right into my lap. Now we just have to get her busing and after school therapies in place and we're good to go -- just about.

I'm having issues with the insurance company now. because we won't be using 40 hours a week of nursing, they are essentially telling me that old addage "if you don't use it, you lose it." So now they're doing another medical review to try and reaccess Amelia's need to have her nursing in place, regardless of whether we use it each week or not. There are going to be days that Amelia will be home sick...and chances are I'll have been up with her all night -- if Nestor's out of town -- that's not a good recipe. There are always tons of doctor's appointments to go to and i will need help with those too. I keep trying to explain that because of Amelia's $2 million lifetime cap on her insurance, we've been looking forward to school so that we can cut back on nursing to try and save the less than $850,000. we have left until she's 18 years old. Most of her specialists don't take Medicaid, so when she exhausts her primary insurance and the Medicaid kicks in, we're going to have to find all new specialists (Neurologist, Pulminologist, Opthomalogist, ENT, Pediatrician, GI, Surgeon and more). Anyway, we have really compassionate Case Managers on it, whom I have good relationships with.

That's Lia holding Amelia at her Birthday party this year, in front of Lia is her son, Everton playing with a balloon. Smiling at her is the lovely Keisha, Amelia's other nurse who will be with us until "we tell her to not to be".

And lastly, the saddest part, it was Lia's last day with us today. She's been with us for over a year and she is the one person, in the world, who would come in here 3 days a week and meticulously take care of Amelia. She calls Amelia "her baby from another mother." Lia would call the next day if Amelia had been sick the day before...or if we even suspected she might be coming down with something. She was the one that Amelia would turn to, with arms up, to save her when therapy got too hard or she just wanted to cry or be held. Lia was a master at restocking the supplies, thoroughly cleaning and rinsing them. She knows each and every sound, noise, sneeze, wheeze and cough Amelia makes. Lia was with us each time we made the trek to Long Island for therapy and help out in every way possible. She knew Amelia's schedule completely and was always on top of when, how and where a feeding, therapy or diaper change took place. Lia came in each day with a big smile on her face and a million stories about her crazy kids and co-workers at the hospital where she worked when she wasn't here. When we told her Amelia was going to go to school she was so happy for her, but knew she would soon be having to find another case. Instead, a position at her hospital opened up and because we thought Amelia would be beginning school the first week in March and this position started the first week in March -- she thought the timing would be perfect. We had no idea that we would have the delays we've had because of the in-school nursing situation. I am so happy for Lia that she is off to this good position. She's always talked about going back to school and this would be the perfect opportunity for her (when you're full time at a hospital they'll usually pay to send you back to school). But I am so sad for us. There was a real comfort in knowing I would see her 3 days a week. We have promised to keep in close touch (she's a friend on FB) but it's always different. The end of an era for us. I am so grateful to have had her for the year, she will never know how much.


Dani said...

very exciting news that amelia will be starting school soon! i am sure you have many different emotions about it! i remember when gracie first started going i was so scared for her but excited at the same time because i knew it would be so good for her! looking forward to updates of how it goes when she starts! xoxo :-)

Anonymous said...

I know this has been a really difficult time for you--with all that is happening. Lia is wonderful and you will miss her, but hopefully you will be able to be in touch and she will watch Amelia grow and flourish.

You are doing an amazing job, advocating, paper work, and dealing with all the details. I wish I could help you out, and take some of the load off your shoulders.

School will be great--once she gets there! So that's the focus!


Ellen said...

That is so great she can be starting school soon AND that they were able to get an LPN for her and another child. One less thing to worry about, right?

I hear you on the insurance company. I am doing battle with mine, as you may know, because they have decided they do not pay for therapies for kids with CP.

We've had the same wonderful nanny since Max was born, and if she left I'd be devastated. I know exactly how you feel about Lia leaving. It is good that you had someone like her in your life, even if for just brief time.

Jodi Cutler Del Dottore said...

Lots of info in that post, and very emotional. What you wrote about Lia was beautiful, I'm so happy for you that you had someone so special with you even for a short time. She needs to go bless others now.
And you, are doing well- go girl. Hugs