Nurse Shmurse

This has been a very bizarre week. After welcoming our nurse, Denise, back from her personal leave last week, she failed to show up to work on Monday morning. No call to me or the agency. Finally, Tuesday morning the agency heard from her. I was told that she would not be returning to our case. she informed them that our case is more of a babysitting case and she felt like she wasn't being properly utilized here. WTF!!!!!! Because Amelia isn't hooked up to ten machines and on oxygen or worse. What does she need? A critical care baby to feel validated? Amelia is, thankfully, in the rehabilitation stage. Her needs are still great, but unless she's sick (and believe me it's scary) she's not as fragile as she once was -- but a babysitting case? I wish. I wish I could just drop her off at babysitting at the gym or call someone to come and babysit her so Nestor and I can go out to dinner. I wish that were my life, this is not what we signed up for and how dare someone diminish what we do here everyday and night. I am in constant motion (as every Mom is) from morning to night -- but my motion is washing syringes and tubing. Making sure everything is clean washed out for the day. Whether it be a suctioning unit, feeding pump, feeding bag, restocking medical supplies or medications. Dealing with a very heavy therapy schedule, scheduling clinic and dr. appts. Worrying about things like that the letter to Con Ed is up to date so if there's a power outage they know we have a medically fragile baby with equipment that runs on electricity. Carrying around a 25lb. , 34 1/2 inch baby who doesn't help you lift her -- doesn't crawl, doesn't walk. We have no one here to help us -- JUST US -- SO GIVE US A BREAK! To leave us high and dry like that. Have the decency and professionalism to call and tell us why you're really not coming back. I know she had lots of personal things going on and I know people's lives and families come first -- I get all that -- but be a human being about it and communicate what's really going on. She waved goodbye to us Friday night and said "see you Monday."

So we've now left our nursing agency, Maxim and are now working with a new agency called Family Pediatric Homecare. I'm really looking forward to having some new nurses and new people to work with. I wish Maxim had been more up front with us and told us that they really have limited Pediatric nursing available, whereas this new agency ONLY does peds nursing. My friend Carrie uses them with her little boy and has been very satisfied, so everyone keep their fingers crossed for us.

So on another front, Nestor and I have been looking into the idea of getting a pediatric walker for Amelia. Our PT, Merna is vehemently against it -- she says she's not ready for it, but she was also against the stander and that's been one of the most important pieces of equipment we've gotten for our girl. So, we decided to investigate further and contacted the wonderful PT, Michelle at UCP NYC. She told us to come in and we could play around with the walkers she has there at the center. So that's what we did this morning. Success! Michelle said she is absolutely ready for a walker called "Smartwalker." Click the address below to view the walker and see video:

http://www.aodmobility.com/SMART/smart.html

It's brand new and in defense of Merna, Michelle said that Merna has probably never even seen on of these yet they're so new. Anyway, it's very exciting! So she's going to call us and let us know when the next Smartwalker clinic will be at UCP, we go there, they fit her, and then we order it thru Medicaid. It's about 2ft by 2ft with a seperate full body orthotic that you strap her into. It goes from under her arms to shoes that hook into the metal bar that extends to the floor. There's nothing in front of her -- no bars to hold onto -- just open space. It's hard to describe -- but we're really excited about it.

Also, today Art and Terry (Uncle Artie and Titi Terry) came down from upstate and spent the day and evening with us. It was great to see them, we've barely been up to the house since it turned cold, so it had been awhile. We had a wonderful time and Amelia was adorable as she snuggled into Uncle Artie and giggled at his shenanigans. And Titi and I gave Miss A a warm, lavender fresh bubble bath which she thoroughly enjoyed, while the guys went out and got pizza. What a fun night.

Not much planned for the weekend, but Monday we meet our new nurse and nursing supervisor. We also have our new OT coming Monday -- so lots of big stuff happening next week -- we'll probably just hang in (as always -- but I love it!!!). I DVRed "It's A Wonderful Life" so that will definitely be on the To Do list.