I took it for Granted.

    The last two years have taught me so much.  I’ve learned so much about myself.  I’ve also realized how much I took things for granted.  This isn’t to say that I am complaining or saying I’m not grateful for Bella or all she has accomplished, I’m just saying that I didn’t realize how many of the little things that came so easily to my older children I didn’t ever think about.  When you watch your child struggle with every little milestone you pay more attention.  You celebrate the things you once didn’t give much thought.  When Ally sat up for the first time we were so excited but I never realized how instinctual so much of it was.  The same with crawling or walking.  Bella is pretty much stuck where we put her.  She can explore her environment on a very limited basis.  She doesn’t learn by mimicking behavior because she can’t follow me around they way my older children did.  She is also getting to the point where she knows what she wants to do but is limited by a body that won’t allow her to do what her brains says it wants to do.        As we have been on our journey through special needs I’ve been thinking of all the things that my other kids did that I took for granted.  Here is just a partial list of things I took for granted:

1. Being able to deliver a baby that was healthy and went home with me after 24-48 hours in the   hospital.

2. Holding my baby the moment she was born.  Bella was a couple of weeks old when I had the opportunity to hold her for the first time and it was a terrifying and miraculous moment all at one time.

3. Watching my older children meet developmental milestone.  Do you realize what all goes into sitting up or rolling over?  I never thought about how easily these things came to our older children.  There are days that I tell myself, “If Bella can just learn to sit up and interact with her environment that would be enough for me.”

4.'Eating.  I never knew the heartache and helplessness that comes with watching your child be unable to eat.

5.Going to the grocery store without being in a frenzy about all the germs and hosing down everything with sanitizer.  I took my son out when he was just a few months old to, gasp, Walmart right in the middle of cold, flu and RSV season!  Who knew to be worried, not me!

6. Not being required to have an “unofficial” medical degree.  I have learned more medical terminology and procedures over the last 2 years to last me a life time.

7. Being able to pack up at the drop of the hat and go camping, swimming, family outings, you name it.  All those things that we did on a daily basis now require extra time, effort, and a lot of equipment.

8. Being able to go to the doctor’s office or the dentist or visit a hospital without it triggering PTSD in my child.

9. Talking.  When Bella was born, her not talking was something that never entered my mind as something she wouldn’t do or would struggle to do.  Oh how I want to verbally communicate with her!

10. Having full function of your body.  Until Bella non of my children struggled with physical disability.  Watching Bella in therapy struggling to hold her left hand open, hold her head up, extend her upper back, clap her hands, sit, roll over, etc. is heartbreaking and yet at the same time joyous beyond measure!

    Nothing in this world or out of it would make me trade Bella.  She is who God intended her to be.  I’ve learned lessons from her that I wouldn’t have learned any other way.  She has brought our family closer in so many ways.  She has made me appreciate and be more aware of the blessings I enjoy with our 3 older children.  She has taught us to enjoy the small moments.  To let go of the things that we don’t have control over and rely more on the wisdom and direction from our Heavenly Father.  We have witnessed miracle after miracle not only with Bella but in the lives of others that we have been blessed to meet because of her.  I think of the people I am now honored to call friend that I wouldn’t have known without Bella. 
    That said I am all too keenly aware of the things that prior to 2 1/2 years ago I never gave a moments thought to.  I hope we take the time to celebrate the little things more.  To relish in the beauty of life and give thanks for the small things that seem so common that we sometimes forget how miraculous they really are.

Bella update

I said I would be better about blogging and I haven't been.  The only excuse I have is that, well, life is busy!  Things are good.  For the first time in a long time there are no surgeries in the near future and no medical issues causing us major stress.  We are finally just getting to enjoy life and what our new normal is.  Knock on wood and lots of prayers it stays that way!!  Now I'm not saying there is no stress or worry but it isn't like it was when we were dealing with head surgeries, failure to thrive, g tube surgeries, and eye surgeries.  Now we worry about our house not being practical for a growing child with multiple disabilities and well as the fact that the equipment that goes with said child is getting heavier as well.

Bella is really doing well.  She currently has a fever and isn't feeling well but other than that things are good.  She weighs 23 pounds and is about 32.5 inches long.  She was growing so good in fact that we had to reduce her calories.  That was something I thought I would never hear about Bella.  She was actually gaining weight too fast....go figure!  She is still 100% tube fed and while I want her to eat by mouth, I don't stress about it too much anymore.  It is such a relief to be able to get her the nutrients she needs without it consuming my entire life.  She is also now big enough to be forward facing in her carseat and boy does she love it.  Now we can't go anywhere without a DVD playing.  She loves to smile and laugh and wait for it............she has started saying words!!!!!!!!!!!!  Can I be more excited?  I think not!!!!  She says: mama (music to my ears), dada, nana (for granny), bebe, aa (for Ally), aba (for Abby), bubble, and more.  She hasn't quite figured out Dallin yet.  She is still working hard in therapy and we are getting closer to sitting up.  She loves the water!!  And will let you walk her around everywhere until you feel like your back might break from being hunched over.  She also loves to swing.
 
I finally feel like we are leaving the world of extreme prematurity and entering a whole new journey of adjusting to special needs and all it entails.  The details of her birth will always be overwhelming and scary but they don't dominate my thoughts anymore.  As always we appreciate the prayers and encouragement from you all!!

All things Bella

Just a quick update on all things Bella.

Weight: Is around 22 pounds
Height: around 33.5 inches

We are doing pretty good.  2014 has started off better than 2012 or 2013 did.  We aren't in the hospital like we were in 2012 and we don't have several impending surgeries like we did in 2013.

It has been fairly quiet around our house with just the usual activities.   We do therapy and...well more therapy.  She is getting PT/OT 3 days a week and 2 days of speech and some feeding therapy here and there.

Bella is still all tube fed but is getting better about letting me put her Nuk brush in her mouth.  I tend to be better about updating Facebook but will try harder to put the fun and exciting things our little miracle is doing here as well.

We always appreciate prayers.  And thank you for them as well.

Right now one thing we are focusing on is finding a way for Bella to communicate with us better.  Her understanding is totally there but she isn't able to tell us what she wants and is starting to get frustrated.  The hard part about this, is that we aren't dealing with just one disability.  Bella is very involved with her motor (movement) and also has CVI and other vision problems.  We had once thought that sign language was a good path for her but we are realizing that with just the use of one hand (old leftie doesn't participate much) sign language isn't going to give her a very usable vocabulary.  Although she does sign more, yes, me, and please consistently.  We are looking at a picture board but then her vision becomes a problem.  SO I'm not sure what we are going to do but I know God will give us the direction that we need.

I still can't believe she is 2.  It really does feel like it was just yesterday that we were in the NICU. 

Bella inspires and amazes me every day.  Thank you for following us on our journey!!  We love you all!!