Saturday, June 29, 2013

Suddenly I feel an urge to vent

Nathan had a new feeding evaluation this week, which included feeding, speech, OT/PT, psychological all in relation to feeding.  Since the feeding program at St. Joseph's and since our insurance contract terminated with their clinic, all feeding progress has been lost.  Really the plan developed at that clinic was unsustainable and was way too demanding on me.  Not that I did not want to feed him extremely structured meals or could not do this, but the actual process of booster seat/5 point harness, lumbar support, chin support, measured meals of this and that in ounces, ipad pause/play between bites basically kept me tied to our home and made it impossible to do anything else with our days.

The actual feeding progress was lost when Nathan got sick with a cold and started vomiting from the excess mucous, and then got dehydrated, losing weight, vomiting more, and lost all hunger.

The new plan is basically very commonsensical, believe me we have tried it already many times in the past 4 years.  Make food preparation, planning, shopping, meal time fun.  Have him sit with us at the table, put an unknown food on separate plate without expecting him to eat, slowly put in closer and then ultimately on his plate.

Well he is my vent - as much as people tell me not to worry that it will take time, this whole feeding/eating situation consumes me.  He doesn't eat.  I don't care if he ate one bite of this or two bites of that, he doesn't do it willingly and it is not enough.

Yesterday he had a can of pediasure 1.5 in the morning and then fought tooth and nail not to eat 1/4 of an 8" personal pizza at 3pm.

Today, it's 11 am, and he has been uninterested in a waffle with maple syrup and butter for 2 hours.  He has had nothing to eat or drink yet and it doesn't even phase him.

So if you ever wonder what is consuming my thoughts and all of my energy, it is this.  I can't show concern for anything else because this is life or death.  It is no secret, you need to eat to live.


Oh an one last thing, I won't mention it again, but the Cystic Fibrosis Run to Breath 10K is July 20th, and I'd appreciate it if someone, anyone, would consider donating even $5 so I don't feel like a complete failure this year.

Sunday, June 23, 2013

Stop the presses, I'm turning 30

This year I will be reaching another milestone in my life, turning 30. I feel like alot of people have a hard time aging and tend to get really philosophical at these age milestones but quite honestly I feel nothing. I don't think it's a good thing or a bad thing, I just tend to let birthdays come and go, not quite paying attention to my age. Age isn't stopping me from doing anything I want to do in life, if anything I am pushing myself to do more and be greater as I get older.
 I already have almost everything I want in life. A loving family, a husband, two beautiful children, and a handful of really awesome friends. Of course it would be nice if I had a retirement fund or at least enough money not to be losing hair paying the monthly bills, but the one thing lacking in my life is the promise that my son will be able to live a long, healthy life well past his 30th birthday. Currently there is no guarantee, even though the life expectancy for individuals with Cystic Fibrosis is increasing with treatments and medications, there is always the exception.
So, as I turn 30, I want to make every breath count and focus on the good. I choose to fundraise for the Boomer Esiason Foundation because it is a foundation that not only funnels money into research for a cure but also is concerned with the quality of life of people living with Cystic Fibrosis today, like Nathan.
On July 20th, 4 days before my 30th birthday, I will be participating in the Central Park Run to Breathe 10k. It would mean the world to me if you can help me reach my fundraising goal.  Every little bit counts and I appreciate all donations, large and small.
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!  You can donate online by clicking this link or the banner above:

Thursday, June 20, 2013

It's June

It's practically the end of June.  It has been a busy month, but then again which months aren't busy.  There have been no hospital admissions or major sicknesses plaguing our family (mainly Nathan), high five to that!

Father's Day has come and gone, and I've been trying to get the kids outside as much as possible.  We've really been enjoying swimming even though the water has been on the cold side.  Pool sharks, we are.

In other news, we made a late decision to register Nathan for kindergarten in the fall so a preschool graduation popped up on our calendar.  It's better for me emotionally not to have been planning and thinking about my baby boy graduating preschool for months.

And now tomorrow I have an initial meeting with the Child Study Team requesting an evaluation.

I'm adding a bunch of mobile photos and will post some of the graduation photos as soon as I am caught up on client sessions.