February 23, 2010
I am excited to report that my March for Babies fundraising is going extremely well this year. With the economy being what it is, I had asked people to give what was doable and they have come out in droves to help me reach my goal of $2,500. I am getting closer every week and I am grateful to so many people for their generosity. Who knew that when Becky was born prematurely at 30 weeks that it would launch a new world for me in terms of advocating on behalf of parents and their preemies and helping to educate preemie professionals?
Interested in participating in my March for Babies campaign? My website is: www.marchforbabies.org/discenza
February 23, 2010
Just found this site for parents to help their kids with special needs do social networking in a safe environment. Is anyone using this site? If so I’d love to hear about your experience on there.
February 19, 2010
So I am excited to write that the Developmental Nutritionist has us coaxing Becky into trying new food with just a simple phrase: “Food Homework.” That is all it has taken so far as well as the reward of playing Daddy’s “Pocket God” application on the iTouch. We are starting with 3 fruits and 3 vegetables a week that she has to try out and it appears to be working. Yes, the interest is more on the fruit side, of course! And so far what I imagined to be large grocery bills in the check-out line as my selective and/or picky eater figures out what she likes has not yet come to pass. I am finding my way through this as is Becky. Fingers crossed. I am praying this works and that we can get her out of the White Food Diet rut.
In the meantime, the specially compounded multi-vitamin and the specialty fish oil are getting into her system as well. Thank God! The downside is that these medicines are super expensive and she will be on them for long-term. Ouch!
No, the NICU may be over, but the preemie stuff is not! Agh!
February 10, 2010
So as the blizzard roars outside, I am finding myself vividly remembering Hurricane Isabel as it slammed Virginia back in 2003 during Becky’s NICU stay. Talk about the strangest days of my life. In short:
- Becky was safely tucked away in the NICU and “kicking back at the beach” as we noted because she was currently under yet another set of the bili lights for jaundice. Our tiny little preemie continued to struggle on various fronts but did well in the end.
- At home, our house had a brown out while I was pumping breastmilk . . . “Oh no you don’t!” I shouted to the ceiling. The lights blasted back on. To this day Gregg, my husband, is in awe saying I shouted down God. He is too funny.
- It was truly bizarre to celebrate having electricity after the storm only to find out that our water was not safe to drink. We showered, we had to deal with toilets that would not flush. At the NICU we were advised to wash our hands but then to use hand sanitizer afterward as a precaution. I was a freak about giving Becky germs obviously. All I could think of was “This sucks!”
- During all of this I wound up in the Emergency Room due to heavy post-birth bleeding. What fun!
My heart goes out to all of the preemie families that cannot get out to see their babies today and to those that chose to sleep at the hospital. None of this is easy. And a big hug to all of the NICU staff that struggled to get into work today. I pray that everyone makes it through this storm intact.
February 2, 2010
Late last week I had a conference call with a Developmental Nutritionist to help me get Becky’s severely limited diet expanded. With a newly minted Autism Spectrum Disorder or PDD-NOS diagnosis in hand from the school I was able to give this new information to the Nutritionist. Wow, I had no idea just how “typical” Becky’s diet was until that call. It was a huge relief to get some explanation of why Becky does what she does and how we can help her.
In a nutshell, Becky’s brain processes tastes differently than say you or me. I was fascinated by that. So we have to help her brain “train” to treat new foods a number of times in order for her brain to accept hem as an “old food” that she will then eat reliably. While this may sound like Baby Diet 101, it sort of is but with a twist.
The other important parts to our conversation included Becky’s multi-vitamin. Apparently the generic Gummi Vites we are using is not appropriate. In today’s UPS shipment I received a dry ice package with a large bottle of Becky’s new compounded liquid vitamin from a specialty pharmacy in Baltimore, MD, complete with Bubble Gum flavoring. And in the next few days we will be receiving a special shipment of a lemon pudding-like flavored fish oil supplement. It appears the research in the last year or so is showing this supplement to be beneficial to preemies both as babies and as children. Here is a great Time Magazine article to that effect:
The big news of the day is that we need to treat learning to eat fruits and vegetables as “Food Homework” and not a food battle. Wow, what a concept – because it actually works! And Gregg took Becky to the local Whole Foods to explore the produce department and had Becky pick out things she would like to try. So far we have been able to get her to consistently try new types of apples, eat a different type of cheese, and even eat a full leaf of lettuce. And her lunchbox now consistently holds a banana. Fingers crossed that this adventure continues and has a happy ending!!
Have you had a child with a feeding issue? I’d love to hear from you. Let’s compare notes!