Wednesday, November 14, 2012

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.


Lady Esther said...

Hi Just got back to my special needs blog and saw your link on my page. Thought I would check in and say Hi! Your Lucy is big. She must be 2 this year because that post was 2012. Amelia is big! I hope you guys are well! Bethany is getting dafos and the the best shoes I found to fit her are because they are naturally wider. She turns 10 June 28th. They found a genetic mutation but I need to get another test to verify. I am so lazy about doing stuff sometimes. But if we could turn a doctors appointment into a vacation that would be motivation.

Anonymous said...

I stumbled upon your blog by accident but am also the mum of 2 SN kiddos. I noticed you said that your Amelia is never alone, that she always has either family or nurse with her, and I am curious as to how you are able to afford round the clock nursing care for her. I looked into it but the cost is astronomical and so I was hoping you could help me.
Can you tell me how much nursing care costs in your area? My area runs about $65 per hour with a 4 hour minimum. Are their grants available with the government? Are there insurance policies that help pay? Any information would greatly help since I don't have anyone to lean on here with my family overseas.

Thanks and God Bless!

Debbie said...

Thanks for the comments. Sorry I haven't gotten back until now.

Happy almost Birthday Bethany! 10 is a big number. I can't believe Amelia is 7 already and Lucy is 18 months going on pre teen, I swear! I always say that unless a diagnosis is going to change Amelia's care -- my kid is my kid. She's great and dragging her to every Dr. under the sun, moon and stars isn't going to change who she is. Dx or not!

Anon, to answer your question, we have nursing through our insurance and respite hours through the Regional Center. We are very fortunate to have wonderful insurance and very unfortunate to have a child who fits the criteria they use to determine benefits. I have had case management through Blue Cross since Amelia was born. They contacted me while we were still in the NICU and have been on board as advocates ever since. With all the hospitalizations Amelia had, equipment and supplies necessary and the amount of Drs. involved in her care, case mgmt. has been my go to whenever I need anything to get done. I don't know where you live or what your situation is, but if there is anything I can do to steer you in the right direction, please let me know!

All the best! Debbie

Lady Esther said...

You must be busy you have not posted in a while! Happy 4th of July. I was looking for tent beds and remembered you and Amelia and just thought to ask you what kind of bed does Amelia have? I'm not sure how mobile she is. I had a custom made bed by a friend but it was so heavy. We made it out of oak. Then years later I realized that there where portable tent beds for less than it cost to make that bed. I like the tent bed because it is on the floor and Bethany can crawl into it on her own. But what I found is that threre are only two companies that make these beds and unfortunately no middle priced competition. The one I have is cheaper but not as durable and has some entrapment issues. I wanted to get the safety sleeper bed and at one time is was 1000.00 but since then is almost 3k! I was disappointed because I feel like they are making a huge profit off of families that really need them and can not afford it. If I was business minded I would design my own middle priced tent bed but it seems there would be liability issues and product safety issues etc and I don't know how to do that. I hope you guys are well. Amelia is getting big. My Bethany turned 10 recently. God bless you all