Thursday, July 21, 2011

It Takes a Village

Amelia just got off her second round of antibiotics for a recurring sinus infection.  Poor thing was MISERABLE!!!!  She seems to be much better now and her system is regulating itself (you know, digestively speaking!).

Summer school started a couple weeks ago and will be finishing in a couple of weeks.  Her healthcare worker, Esther, who is with her during the school year has been by her side all summer and Amelia is so happy to be with her.  She looks for her every morning and carries on until Esther arrives.  Esther is just so good with her.  She knows Amelia's sounds and personality so well and has been able to push her further in her communication skills.  For example, Amelia has a button on her cheap talk at school to use the potty (their facility is really well equipped -- I'm working on getting a toileting system here at home for her) and Esther has figured out how to figure out if she is finished or not.  Esther will ask her if she is finished and put her hands out, with her fingers touching (this how you begin to make the ASL sign for "finished").  If Amelia is done she will put her hands on top of Esther's hands and the two of them will complete the sign by pulling their hands and fingertips apart and saying "finished".  If Amelia isn't done, she'll push Esther's hands away.  It's quite amazing that they were able to figure this out!  We're incorporating that for everything now.  Giving her a chance to let us know what she wants.  Not easy with a non-verbal child!

I am also in the process of getting Amelia some much needed adaptive equipment.  The toileting system, which I mentioned is one.  Also,  a new stander (Snugfit Gecko Upright Stander, size 2) and a tie down stroller for the bus (The New Bug Seating System, with a 4 wheel base).  Getting all the sizes, colors, options and accessories sorted out was a little daunting, but it's done and now we're just waiting for the letters of medical necessity to be reviewed by the insurance company so we can move forward with the vendor, ATG Rehab -- who have been wonderful to work with.

As for me, well, I look like I've swallowed a watermelon -- whole!  I'm getting rounder by the minute.  We've hit some complications -- baby is fine, thank goodness!  I am 22 weeks and it is too soon to make an official diagnoses -- it's not usually done until 26 weeks, but looks like I have placenta previa.  That means that the placenta is on top of my cervix.  This makes me prone to bleeding, which is what happened last friday -- sending us to the OB.  There was a small tear in the placenta and a tiny blood collection in the uterus, which is what caused the spotting.  I was put on bedrest for the weekend and went back to the Dr. last monday to follow up to make sure the collection was getting smaller not larger.  The blood collection is gone!  YAY!

However, the snafoo for us is that I am now ordered by the Dr. to "take it easy!"  Lay around, no working out, nothing stressful and most importantly, no lifting anything over 10 pounds.  Uhmmmm, Amelia weighs 50 pounds!  My OB said that I've had 1 bleed, 2-3 bleeds and I'm in the hospital for the rest of the pregnancy!!!!  So my poor husband has been on call 24/7 when Amelia's nurses aren't here and he has been a doll!  Honestly.  It doesn't surprise me, but boy o must be annoying to hear me every few minutes "Nestor?!  Can you come here and....."  He's been a real sport!

I called the insurance company, Anthem Blue Cross and our nursing agency, Maxim last friday to start the process of getting more hours of homecare nursing in place while it wasn't an emergency.  As the primary caregiver, I can't take proper care of Amelia by myself and if Nestor isn't here, I need some more help!  Imagine our surprise when Nestor got a call that he was going to be flying out to North Carolina today to do some reshoots on a pilot.  Yesterday.  At 4pm.  Can you say WHAT????????  I went into panic mode and called EVERYONE!!!!

I am very fortunate to have terrific people around me -- so here how it went down.  I called Maxim yesterday, right away and found out that I needed to get a prescription from Amelia's pediatrician.  Her pediatrician isn't in on wednesdays so I knew that was my first call this AM.  Because of the placenta previa, Blue Cross assigned me an OB case mgmt. nurse to oversee the rest of my pregnancy and make sure I'm getting all the care and services I need -- so I put a call into her VM yesterday, to call me today ASAP!  And the rest went  "more awesomely" than I ever could have imagined!  Usually it takes 5 days for BC to evaluate and determine a request for more hours of nursing -- but this was a bit of an emergency, so they sped it along.  Might have helped that I reminded them that if something happens to me they are going to end up paying for my stay in the hospital for 3.5-4 months and 24/7 home nursing for Amelia! I got a call around 1:30pm letting me know that the approval had gone thru!  WOW.  Just WOW.

Nestor flew out at 6:30AM this morning.  So, our neighbor, Chuck came over at 8AM and transferred Amelia from the house to the carseat for me.  I called the school on the way over and an attendant met me outside and took out Amelia's 45lb. stroller and transferred Amelia into it.  Then at pick-up, Esther walked us out to the car and did the reverse.  When I got to the house, Amelia's nurse was supposed to be here -- but hit traffic and texted me she was on her way.  In the meantime, Chuck's wife peeked out and asked if I needed Chuck again..."yes" I said with a sheepish smile.  He came over and transferred Amelia back to the house.  Then Amelia's nurse showed up and all is right with the world!   We'll do the same tomorrow and Nestor will be home Saturday night.  *breathe*

It takes a village people!  It takes a village.