All things Bella

Here it is almost October and I haven't kept up on the blog all that well.  Here is the run down of Bella the last few months.

I think the biggest news we have is....her weight.

Weight: 18lbs 8oz (up from 12lbs 11oz in May)
Height: 30 inches (up from 27 in May)

She actually has rolls.  I am SO excited!!!

One major bummer of the last few months is that Bella has decided that she won't eat by mouth anymore.  In a matter of a few weeks she went from 100% oral fed to 100% tube fed.  The doctors and therapist can't explain it, other then to say that she is acting age appropriate (in telling us she was tired of the bottle and the nasty formula).  This has been a huge disappointment for me.  Her eating orally has always been the one thing she did well, so for her to loose that was devastating to me.  However, her growing and getting the proper nutrition trumps those feelings.  She still has massive reflux and can vomit when the mood strikes her.  But it is way less than before so thank you nissen!

We go back to Salt Lake City in November for another MRI and a follow up with the neurosurgeon and eye surgeon. 

Bella refuses to wear her glasses and I haven't figured out a way to keep them on her so I pick my battles.  We see a specialist from Denver's Anchor Center every 3 months and I am encouraged with what she has to say.  We were told again today that Bella has enough functioning vision (without her glasses on) that they are confident she will be a visual learner!

We were able to cross one specialist off our list this week.  As of Thursday, Bella was released from the heart doctor.  Bella's heart is a picture of health!!  What great news!!!

I get the question a lot "Where is she cognitively?"  That is such a hard question to answer.  Because Bella is so involved physically it is hard to "test" her on things.  Who realized how much we use our body to demonstrate what we know mentally.  My answer to that question..... She is pretty delayed but making great progress!! 

We recently started speech therapy.  We were told that for speech Bella is at a 6-9 month level.  Not to shabby for a little girl with her history!!

Therapy is going well.  We have a Stander for Bella now in addition to her chair.  This helps her learn to bear weight on her legs and lets her view the world from a different perspective.  She rolls both ways now, which is exciting.  We are getting ready to Botox her legs soon.  Hopefully this will break up the spasticity in her legs enough to let her learn to sit and stand better.

Things she knows.  Bella knows where her hair, ears, nose, lips, tongue, belly, toes, and finger are.  She will show you these on command.  We actually taught her how to pick her nose.....don't judge.  It was the only way I could get her to show me where her nose was.  She is starting to learn her colors.  She can also take things out and put things in a bucket.  She plays patty cake and peek a boo.  If you cover a toy she will remove the cloth and play with the toy (this is huge).

She will growl at you when she is upset and sometimes will even bite herself.  She knows how to tell you no no no (and does this quite frequently at therapy).  We are working on sign language and the sign for "yes".  She is quite vocal some days (especially with her siblings).

I think that is it.  Bella in a nutshell.