MIA

So, we have been MIA for a few months.  My heart had many moments that it wanted to update the blog but I just never seemed to make it to the computer.  Life has been crazy.  Here is a quick run down on all things Bella.

Current weight 12lbs 6oz (she gained 1 lb in 10 days)
length is 25.5 inches

Neuro:  Bella is still shunt free.  Our next appointment in Salt Lake is in July.  I don't worry so much about the hydrocephalus anymore.  We had a couple appointments with the neurologist and while she was a very nice person and oohhed and awed over Bella, I have no desire to see her again.  Why, you might ask?  Because she got to be the bearer of difficult news.  Because of the bleed Bella had in her brain at birth, she is now missing about 1/2 of her total brain volume.  This sweet doctor gave us this news as well as the diagnosis that Bella has moderate spastic quad CP.  Is it becoming clearer why I might want to avoid seeing her again?  As long as Bella remains seizure free (she is at high risk for seizures) we will only have to see Dr. Green once a year.

Eyes: Bella will be having her first eye surgery in April.  This surgery is to align her eyes, which will hopefully help her eyes and brain work better together.  We have seen some improvement in her CVI which is reassuring.

GI: Poor Bella has been through the ringer with getting the right food for her to grow on.  Bella was labeled failure to thrive and we had actually scheduled surgery to place a g-tube.  We tried her on Pediasure which was a big no go.  Then switched to Pediasure Peptide (protein is more broken down) this lasted about 1 month before she was throwing up all the time.  It is my diagnosis that she does in fact have a milk protein allergy.  She is now on her 3rd week of Neocate Jr. she seems to be handling it well (hence the 1 lb gain in 10 days).  The g-tube as been postponed until we re-evaluate in May.  Prayers are that she will keep eating the Neocate and grow, grow, grow.

Therapy: We love our Missy!!!  Bella now goes to therapy 3 times a week.  Twice for PT/OT and once for feeding therapy (trying to get her eating solids).  Progress seems very slow to me.  It seems like we make a good stride and then Bella gets sick and we start over.  She still isn't sitting on her own.  She can roll back to belly but then is stuck there until a) someone takes pity on her and rolls her over or b) she goes to sleep.  She still doesn't push up on her arms when she is on her tummy.  BUT her legs are not as tight.  She is sitting supported better and her head control is coming along.  PATIENCE is SO hard!!! 

We are gearing up for the March of Dimes walk.  We are also working on the "Because of Bella" project.  My goal is to update at least here monthly.

How you can help.
We always appreciate prayers.  Specifically that eye surgery will go well, that Bella can continue to eat well and grow (hopefully without a g-tube), and that she will respond well to therapy.

As always, thank you!!!