Friday, September 23, 2011

No More Feeding Tube!!!!!!

Hooray for Emma! Today is her 6 month birthday and there is so much to celebrate! She was eating so well that on August 15th we took her feeding tube out for a 2 week trial run. Now, almost 6 weeks later, she's still going strong! Her weight gain hasn't been consistently an ounce a day like her pediatrician Dr. Terashima would like, but at least she hasn't lost weight. I tell you what, it is sure nice to not have to always worry about her pulling it out (especially now that she is a lot more coordinated with her hands) or it getting wrapped around her neck, or catching the end in chairs when you stand up, etc, etc... Not to mention how nice it is to not have to wash all the syringes. I finally took the back-up tube and face tape out of her diaper bag yesterday and it was so liberating! She is still on a higher calorie formula for now (27 cal.) but we hope to slowly back it down to the normal 20 cal.

Dr. Garnreiter, Emma's cardiologist at Primary Children's, saw her 2 weeks ago and said that her heart murmur (VSD) is still there but continues to improve. He took her off the Lasix which was her only medicine at this point... No more medications to keep track of (another HOORAY)! We won't need to go back to cardiology until she's a year old. :)

Emma's shunt incisions have healed beautifully and it continues to work properly. She scratches at it a lot on the side of her head and when I asked the neurosurgeon about it he said that is very common because it itches while it's still healing. I asked my dad if his shunt itches and he says that it does and he has to rub it. Poor little thing, I just keep her finger nails trimmed and hope she doesn't scratch it too hard.

Developmentally she is right on track according to Susan the physical therapist. We couldn't be more thrilled that the spina bifida itself has had such a relatively small impact on her motor skills... We will know more as she gets older if it will impact her ability to walk, but things are looking good. Below is a picture of her learning to sit up that I took 2 weeks ago.

Our Little Aggie

Sweet girl, 5 months old.

On to bigger and better (I think) things, like rice cereal...

...and sweet potatoes!!

I love to see those tiny toes wiggle against all odds!

Learning to sit up!

Now that takes some skill.