Amazing Amelia is Officially a Teenager

Happy Birthday Amelia! Yesterday Amelia turned 13.  Whew, that was fast!!!  Amelia may not be the typical teenager but she is excellent at ignoring me, eye rolling and yelling at everyone when we interrrupt her TV watching.  She loves playing around on the IPad, she is part of an incredible weekly adaptive dance troup and as is every teenagers right, she has been less cooperative in almost everything we try to do with her (walking, sitting, standing, respiratory therapy, etc). Sometimes we chalk it up to her being a young woman.  Other times it seems more neurological and her lack of ability to coordinate her movements.  

Amelia is a wonder.  She has taught us so much about enjoying life and overcoming struggles.  With Amelia we must all live moment to moment.  Day by day.  Nothing is taken for granted because everything about Amelia’s life can change instantly.  Her health, her nursng care, her therapists, her body and her needs being met.  The world is different for her in that her communication with us has not developed easily.  We know when she’s happy and sad by her sounds.  With all the programs and devices out there, Amelia hasn’t been terribly motivated to speak to to us and therefore, that piece is still a challenge for us.  

However, all that said....Amelia is having her Bat Mitzvah in June! We are beyond excited!!!  We’ve been working closely with one of Amelia’s former teachers.  She is absolutely committed to helping us make this happen.  Actually, we are surrounded by an incredible village who are paving the road with us for this extraordinary event.  From her teacher asking OT’s and Speech therapists for their input (and them coming up with stellar ideas), to our temple who just updated the Bimah in the sanctuary to be wheelchair accessible and the multiple meetings we’ve had with our Rabbi and Cantor to tailor the service exactly to Amelia to set her up for wonderful success, to all our family — especially her little sister, Lucy and my nieces and nephews who have stepped up to say they want to be her “voice” for her Bat Mitzvah.  So many moving parts here to make her day a spectacular success.  

When your child is born with special needs, you learn to let go of milestones and expectations.  It’s the only way to survive as a parent.  Well, I now have a lovely vision of Amelia’s (near) future.  A beautiful, sunny day in June where Amelia will be surrounded by the love of her village and participate in the tradition of becoming a Bat Mitzvah.  It is rite of passage for every young Jewish person.  I am so grateful that Amelia will have the opportunity to stand before us and create that milestone for herself.

Big Changes. Big Year.

So the first thing I need to do is give a huge Amelia update! It appears that she has had some kind of cognitive growth spurt in the last couple weeks.  I don't know if this is due to the growing necessity to assert herself before her little sister steals all her thunder or what...but something big is happening for her and it is so exciting.  Amelia has been more social in the past week than she has been her whole life.

Usually hanging in her room, particularly once we put the TV on for her, is all she wants to do.  Amelia will just play for hours in there with or without anyone (she always has either us or a nurse with her -- but she is content to do her own thing, you know?).  In the last several days we've had different visitors, cousins and my parents.  Amelia has started to complain when we're in the other room playing with Lucy.  I have always dreamed of Amelia hanging out with us in the living room wanting to play but every time I've tried it she starts to cry or belly's into the den wanting the big TV or any variation thereof.  But in the last couple days...she WANTS to be with us.  Playing in the big blue toy box in the living room and hanging with us.  It's astounding!!!!

And not only that -- Amelia has begun to do the most amazing thing physically.  She reaches up for me and it looks like she wants to give me a hug, but what she really wants is to use me as leverage to stand up.  She puts her hands on my shoulders, gets her feet flat on the floor and pushes her tush in the air and then I give her hands support so she can push her upper body upright.  It's incredible and she figured it out on her own.  Now that I know what she wants to do, I can really help her. And once Amelia's up, she wants to walk around, maybe go outside and sit in a comfy chair...I mean, isn't that what we all do;)

And let's not forget the newest and biggest change in our lives...Lucy.  I can't believe it but our little girl is turning one tomorrow.  She has done everything she's supposed to do on the early side of when she was supposed to do it!  I was able to read "Babycenter" emails each week and not cry. Watching Lucy eat will never get old for me -- I could watch her do it all day!  Seeing her roll over, sit up,  then dance on her tummy like a beached seal until she figured out how to crawl, stand up, cruise, walk and now almost running!   She and I giggle endlessly and come up with new and nonsensical words.  I have been able to experience the endless joys that come with raising a typical child.  And I am so grateful!  I will owe that to Lucy for the rest of my life.

I've also felt the deep sorrow that comes with the knowledge that Amelia and I were both cheated of so many wonderful experiences -- but comforted by all the special moments and the bond that I know only Amelia and I will ever have.  I am the person today because of all the gifts Amelia has taught me.

Soooooooo Typical!

I've attempted to sit and update for some time now.  I've been slightly busy.  So much to tell you!

Well, first and foremost...Amelia became a big sister on November 15th, 2011.  Amelia was not terribly thrilled about the whole thing.  For one thing, Mom was gone for 5 days, when I came home -- I wasn't a whole lot of fun (tired and recovering from the c-section) AND I brought with me this little screaming, crying and attention grabbing critter that we all keep oohing and ahhing over.  Seriously?

 Lucy Rebecca

Lucy Rebecca is healthy and strong.  She is as typical as they come -- from the get-go!  Lucy is in the 90% for weight and 95% for height.  Her babbling, eating and movement is right on target in every text book and chart.  I am in awe of her.

 This is Lucy at about a month old.  

I couldn't believe the smiles she was giving me.  

This was taken after her first holiday party.

We've had our ups and downs, but 4.5 months later -- cut to today, I'm standing in Amelia's room speaking with her OT.  Amelia is sitting at her little table and chair and I come in and plop Lucy on her table, sitting.  So the girls are eye to eye and the OT and I are talking...next thing, I hear Lucy start wailing and I look down to find 3 of Amelia's fingers in Lucy's mouth!!!  Amelia wants so much to interact with her baby sister, she's just not sure how yet.  I keep telling them both "just wait, you're going to be BFF's!"

 

  The gorgeous Amazing Amelia

 

  Amelia's 6th birthday party at school.

 Amelia turned 6 on January 24th. 

 I can't believe what a big girl she is.  She is growing up so fast. 

My beautiful girls

This was taken a little over a week ago.

Here's a wonderful article.  I hope Lucy is this devoted to her sister one day.

Why a Rising Women’s Basketball Star Left Hoops Heaven for the Home Team

Playdates, Halloween and More...

Yes, she IS a Rockstar!!!

Amelia had her first official playdate yesterday.  We met up with one of her schoolmates, who has a typical twin sister -- so it was doubly fun!!!  Nestor and I have become friendly with their mom, who is just terrific, so we were really happy to hang out with all three of them.  We met at Brandon's Village in Calabasas, which is a universally accessible playground.  It was our first time there and it was really awesome!  There are ramps to every part of the structure and we were able to take Amelia all over the place.  Their favorite was thing there was this pole with a button you can push to create a cool mist of water.  It was in the upper 80's out here and we had spent some time in the sun, so it was wonderfully refreshing!!!  The girls LOVED it.    Here's a link to the video we took.  *Turn down the volume on your computer because I am WAY too loud.  Sorry, I'm still getting used to the video on my new phone!

Today we went to Amelia's school for their Halloween Parade and class party.  It was adorable!  Amelia was dressed in a festive outfit to show off her Halloweeny spirit.  After the big parade, the kids all went trick or treating from room to room and then Amelia was treated to a big plate of frosting from the big Halloween cake her teacher had brought in.  She had quite the amazing time with it!

Amelia at the parade in her stander

Concentration is the most important part for destroying a plate of icing! 

Testing the icing to make sure it's okay to proceed

 And it's good!!!!!!

And not to be ignored...Mommy went as an 8 Ball!

We're 2 weeks away from the big day!  And yes, I am getting a little excited/nervous/anxious/crazy!!!!!

Fun at School

Playing in the pool!!!

Looks like fun, right?

These are pics of Amelia in the "swim program" at school.  It looks a little more like sitting in a really cool jacuzzi, if you ask me!  There are jets in there and the water is shallow.  All her little classmates are around her playing....very cool stuff!  Amelia loves the water so it's really exciting that she'll be participating in this every Wednesday of the school year.  Of course, nothing is ever easy and I had to get letters to fight the school doctor who wasn't going to let her participate.  Apparently, in the past, other parents of kids with Gastrostomy tubes have sued the district because their children developed an infection around their G-tube sites after being in the water.  We were told that each class has a freshly cleaned tank and water to go into.   I had to write a letter stating that I accept all responsibility for any complications that may arise (uh...didn't I take that oath when I gave birth to Amelia??????)  and that I had received permission from Amelia's Gastroenterologist that it was okay for her to participate.   I get it.  Everyone needs to protect themselves these days because no one ever wants to take responsibility for anything.  The great news is...she got the ok and it's all good times and "slip and slide" fun!!!

Nestor and I have been shlepping Amelia to all her specialists.  It's been sooooo busy.  In the last 2 months we've been to her pulminologist, neurologist, opthalmologist,  dentist, gastroenterologist, ENT, had her MRI done, pediatrician for 6 shots:(  -- she was SUCH a good girl and a check-up and lastly, a feeding evaluation done at Children's Hospital.  This has been on top of all her school and therapies.  We're exhausted!   Good news is, it's done.  Now we have a month to wind down a little and turn our focus on getting things ready for this new little critter -- who will be invading our house mid-November. I have a c-section scheduled for November 15th...so unless she can't wait, we'll be seeing her just before Thanksgiving.  Is it mean to have the nickname "Butterball" already picked out?

My folks came into town a couple weeks ago.   My mom, sister and dad (yes, he gets credit because he shlepped the boxes to the post office!) worked very hard going thru the hundreds of bags in my folks' basement and picking out the girl stuff  0-12 months, to send out here to me.  So much work sorting thru, but so much fun!!!!!  Very exciting stuff.  Also, the big dilemma has been to ship, or not to ship -- the big baby gear that is.  The clothes were a no brainer, but the baby gear is another story.  My mom has strollers, high chairs, bouncers and swings in her basement.  The question is....how expensive is it to replace these things here in CA or is it cost effective to ship it all and pay hefty rates?  While my Mom and Dad were here we went to Babys R Us and did some calculating.  Well, somehow we hit some amazing shopping kharma, because they had tons of stuff on clearance PLUS, a salesperson walked by us and mentioned that everything was going to be 25% off on Friday (we were there on a Wednesday).  I mentioned that the things we were looking at might not still be there Friday to which she said "put it on hold and call tomorrow (Thursday) and ask them to put it on hold for another 24 hours and you'll be in on Friday to pick it up!"  GENIUS! And somewhat sneaky....but who am I to argue with a brilliant plan?  So that's what we did.  We got a high chair, bouncer, excersaucer, glider with ottoman and a sweet little chandelier for Amelia's room.  We already have a crib, pack and play and infant carrier from Amelia and I was able to pick up a snap and go stroller off of Craig's list for $30.  So we're in really good shape!  Now all I need is to pack my bag for the hospital.  Oh, and get everything up to the house from the garage...and wash the hundreds of baby items in Dreft...and put the crib back together...and wipe everything down that's been sealed up in the garage....and, and, and......:)

The peace of mind that is helping me thru....Amelia's BFF, Jozette -- who was her respite worker in NY, is coming in the Saturday before the scheduled c-section and staying until just before Thanksgiving.  Jozette has an extraordinarily demanding job at UCP, NYC managing adult residences there.  She is taking her vacation time to come out west to be here to take care of Amelia while I am in the hospital.  Getting Amelia up in the mornings, doing her treatments and packing everything up for school, taking her to school and picking her up.  Jozette is an angel!  That's all I can say.  She is member of the family -- and we are so touched and grateful that she is going to be here.  I know it will help Amelia feel grounded when I'm not here.  Jozette is so loving and productive, I know she's going to make the transition as smooth as possible.   And after that, my mom will be coming out to help.  We're so lucky to have such an incredible support system.  Truly, truly blessed. 

First Day of School

Well, Amelia had her first day back to school yesterday.  I really wanted to get pics and video to share...but she was not such a happy camper yesterday.  Not sure if it was getting up so early (she had been sleeping in until 7:45/8am every morning!) or just the frantic pace it takes to get her up, dressed, respiratory therapy done and out the door to drive to school.  In any case, NOT HAPPY!  I did take some video, but it's pathetic as she is kvetching the whole time!!! Today was much better, so I'll try to take some happy video/pics and post them soon!

Nestor and I are really excited for this year because Amelia has been placed in a higher functioning kindergarten class.  Many of the kids are ambulatory, some are slightly verbal and they are all very engaged.  It's so terrific to see her around a bunch of kids who are interactive with their environment.  Not necessarily with each other at this point -- but the potential is there!

The other fantastic piece is that Amelia is with her Pre-K teacher, Carolyn again who is just phenomenal!!!!  She goes so above and beyond what is expected and that's such a blessing in any classroom setting.  Also, the support staff, meaning all the classroom assistants are the same and the biggest thing -- Amelia's healthcare worker, Esther is with her again this year!  Amelia is absolutely crazy about Esther and vice versa!  Esther works her like no one else!  She has high expectations and doesn't take any baloney from Amelia:)  Esther treats her like a regular kid and  Amelia definitely steps up to the plate when Esther's around.  It's great to see.

There's definitely a settling in process though.  Amelia's school day is now much longer, from 8:15am to 2:40pm.  The glitch is that she still naps, sooooo that's a little hard.  She came home yesterday and was wrecked!  It was really hard to get Amelia to nap -- but totally necessary because she was in complete meltdown mode.  Also, it was so late in the day I was afraid to let her sleep too long, but things were so "fly by the seat of our pants," unfortunately, we did let her sleep too long (about 50 minutes) and she would not go to sleep last night.  Nope, not having it!  Last night I think she finally conked out around 10:30pm (yikes!).  The really cute thing that happened though is that I laid down in her bed with her for awhile trying to soothe her.   I had my big pregger belly to her little back and wouldn't you know it?  Amelia's little sister, from deep inside me, started kicking Amelia in her back!  Obviously, they were little thumps, but so cute!  I was just lying there in the dark, holding Amelia while she was settling down, with a huge smile on my face, while my belly was wrestling around with her future big sis!  I just kept thinking -- well, here we go!  The little one isn't even here yet and she's already instigating!!!!  Life's about to get a whole lot more interesting!

P.S.  By the way, the MRI went great last week.  Thanks to all for your support!  We'll be seeing her neurologist at the end of September so we won't really know much until then.

MRI Tomorrow

After many cancellations and reschedulings, we are finally taking Amelia in for an MRI brain scan.  She hasn't had one since she was in the NICU.  It may sound odd that we haven't followed up on an MRI -- being that we have a child with neurological issues, but it hasn't really been my priority.  Amelia's MRI from the NICU never showed anything.  Nothing.  Big fat zero!  She is who she is...but no tests, scans or otherwise have ever come back as anything but....normal.

I always cringed at the idea of putting Amelia under anesthesia and exposing her to radiation in order to see some images that are never going to make a squat of a difference in her life.  If Amelia was having seizures, this information would be important.  If she was regressing and we couldn't figure out why, this would be critical.  But as things are today, it's not going to change her plan of care.  It's not going to give us some magical answer that will give us the knowledge we need to "heal" her.  It's just a gathering of information.  Nothing more.

So, why now?  Well, she's five.  Also, we have a great neurologist at Children's Hospital (CHLA) who thinks it's time.  She posed it simply to us:  "She hasn't had one since birth.  It's time to have a new MRI done so we can have a conversation about it."  I don't know why it made so much sense to me when she said it this time, but it did.  I felt like, ok.  Let's do this!

It also helps that Amelia has been very stable these past few months.  Since she had her ear tubes replaced in April, she's had just a sinus infection over the summer.  Otherwise, she's been healthy and thriving -- although, I will say LAZY!

Must be the mood in the house with me on "low activity"=sitting on the couch!  And Nestor...well, in a nutshell, he climbed up on wall by our front gate to fix a light sensor, fell and has the "rolls royce" of ankle sprains.  So he's been lying on the couch next to me.  Together,  we're about 1/2 a parent!  Poor little Amelia, her parents are such fuddy duddys!  Anyway, Nestor's on the mend and I am in a temporary state of being...so we'll be back and better than ever in no time.

Meanwhile, have a great  Labor Day "last weekend" of summer.  Hope your hot dogs are perfectly charred and your lemonade is cold and sweet!