Playing with Cousins

Snuggling with her sisters:

Bella got to go outside and spend some time with her cousins!

Aunt Cyndi holding Bella for the 1st time!  :)         A happy little girl!

Crazy Bed Head

Happy Progress

Bella has been well since December – I simply can’t believe it!  With 2 months to work with, she is developing like crazy.  She went from not being able to distinguish between strangers and familiar faces to showing a distinct preference!  :)  She is making sounds now to say, “Hey you, come talk to me!”  She is amazing!!  Give this kid some healthy time and she’ll take full advantage.  This Mama’s heart is so full!  :)

 

I love this picture!!  We are starting to work with Bella on “reading” books and turning pages.  One day while sitting next to Bella, Joy took Bell’s hand and pointed to the red bird.  Someone’s had a lot of therapy!  :)

 

 

We are trying to get Bella upright and “playing” with toys every day.  Doesn’t she look so grown up?

   

 

The weather was wonderful and Bella was doing so well that we took her outside.  We just went up and down the driveway, but it was so fun! 

Sound asleep.  Made me smile  :) 

Lax ligaments – text book example  :)

We got her AFOs and her stander was approved – after only one appeal – WAHOO!  Hoping that will come sooner than later.

Worthy of a post all of its own…..

She was outside!  She was swinging for the first time!  YEAH!

Wahoo for living!  (and HME time!)

Last February

Last February we were stuck up on the Cardiology floor.  I used to take pictures of her hair when I was bathing her.  So looking at her like this today brought last February back to me in a flash.  I am allowing myself to process all of last year.  Ugh – what a year.  How grateful I am that she is doing so well now.  How grateful I am that she is progressing now.  A friend commented last year that my spirits must be good because I was having so much fun taking so many pictures.  (See this fun post)  Truthfully, I was taking so many pictures because I wanted to have some for her funeral.  Proof of her existence.  She was here!  She was adorable and incredible!  Don’t forget her.  One year later I am still taking pictures like crazy and she has only shown me more and more how wonderful and incredible and amazing she actually is.  I love you Bell – all of your funny body parts and your crazy hair and your sweet and incredible spirit!  Love, Mama

Bella’s Week

Things are going well.  The doctor on Monday said to try and increase her time off the vent if she could tolerate it  - and she has.  She is doing fantastic.  Our goal right now is 3 hours off a day.

Some holding shoots:

Some therapy shoots: 

Just hangin out shoots:

 

And then Valentine’s : I love this picture!  It is so good of her beautiful skin!  I thought she could try a taste of the candy ring she got from Grandma, but no, she wasn’t interested.  It made me chuckle and remember her biological sister’s reaction to candy.  One day in the NICU, her family was visiting.  One of the nurses took Bella’s sister with her to the vending machine.  Let’s face it, a NICU is not that exciting for a 3 year old.  When she came back, she had this horrified look on her face and she told her mother that the nurse had bought chemicals (said with the most disgusted tone you can imagine).  Bella’s mother likes healthy, natural food – and candy is not on that list.  :)  So today I smiled at you Bella because you reminded me of your family.  They would have been so proud!  :) 

Doing great….

Today we went in for a ….well child checkup.  Wow!  Those don’t happen often around here and I was thankful.  We walked out with referrals to 4 more specialists, but she is doing great.  I am so thankful.  She is doing so well that I’m waiting for the next shoe to drop. 

I also feel so guilty.  I just found out that a very sweet little girl is losing her battle with cancer.  My heart is just breaking for her family.  I am so sorry.  I wish I could fix it.

But with that spinning in my head, when the doc saw a little rash on her upper arm/chest and ordered a CBC, my stomach flipped.  Please no…  The doc is pretty confident it’s nothing.  She is even letting us wait till we do our TSH/T4 draw the first week of March, because she’s sure it’s nothing.  I hope so.  I really do.

Today we are 8.6 kg and 68 cm long.  She looks good.  She is playful and interactive.  She is a complete joy to be around.  I love ya Bella!

An adventure and a hope

Today’s adventure.  We were home without a nurse (we haven’t been having much luck this week in the nursing department, but we are doing just fine).  We had Bella on the HME and in the kitchen with all of us as we made and ate lunch.  Bella’s numbers were OK, but not as high as I would like, so I had plugged in a little oxygen to the HME.  Little Bella just kept pulling it off again and again and again.  On the millionth time, Kris looked at it really closely and asks me, “What is this other tubey thing?”  Other tube?  What is she talking about?  I walked over and after removing the gauze and HME that were hiding everything, I see this:

That tubey thing is her trach – out of her body!  And the kid is sitting there sating in the 90s.  What?  Jason and I spring into action and our baby girl is now sporting a new trach IN HER THROAT where it should be!  :0 !!  The only thing we can figure is she pulled it out in one of her many, many pulls.  Golly gee willikers!

But this leads me to my hope.  Bella is doing really well right now.  She is playing and doing some serious off vent time (1 hour at a time a couple of times a day!!!)   I dare not even type it for fear of what could happen, but I guess I should embrace the healthy times when they come.  Here are some dang cute pics of my little princess.