Thursday, May 2, 2013

Poof. Another week gone ...

The last week has been crazy. But then again, all of my weeks are crazy. But this last weekend, specifically, crazy, crazy.

Today as I write this, we have a major wildfire raging through the mountain side not far from us. The last report said the fire had burned through 6,500 acres. Our family and my little town of Camarillo, seem to be clear from danger but literally right up the hill, it's a whole other story. Very scary and praying for containment, which currently stands at 0% with high winds and high temperatures in the 90's hindering the efforts. Hoping we will hear of some progress soon. For now, we are urged to stay indoors as the air quality is horrific. This asthmatic will be heeding those warnings.




I will try and blow through the events of the week, as not to bore anyone to death. My mother in-law is now "online", so I am trying to keep her happy. Hope it's working Barbara. The following graduation pictures would have been way better, as in way, way better, if someone had remembered to put an SD card into the digital camera. Entire day of photos taken but not actually taken, because no card and no internal memory in the camera, equals no pictures. Such a bummer. Mark tells me there were some "super good ones". I'll have to take his word for it. These will have to do. Thank the Lord for cell phones. I think I will try and stop beating myself up now. I tend to hold onto things a tad bit. Shouldn't come as a surprise to those who know me well.





*And Joe the photo bomber strikes again.

After a long but beautiful day in Malibu at Taylor's graduation, we came home and kicked off our shoes for a bit, ate some good food and yummy desserts, then Zoey and I headed back out the door with a good friend of mine to attend a fundraiser for a non-profit called 'Zeno Mountain Farms'.You can read about Zeno Mountain Farms here  but in a nutshell, this is their mission statement:

The goal at Zeno Mountain Farm is simple: We wish to support friendships between people with and without disabilities. To this end, we vigorously maintain the following principles:
  • No one, including directors and administrators, is paid or pays to take part in camp.
  • Parents of campers are discouraged from making donations.
  • We expect our art, film and theatre to be more interesting and beautiful because of the unique people in our community.
  • People are invited back year after year to be together.
  • We are a community of friends. We are not “staff and clients.” Everyone at camp is expected to support the community to the level of their individual ability.




The video speaks for itself. Suffice it to say, I was in tears by the end of the night. Zoey and I, were embraced and loved, unconditionally, for an evening and it felt like home.





video
Clearly, Zoey had a blast.

Sunday found us celebrating Jessica Leigh at the first of two Bridal Showers she will be having. Beautiful day. This was her "friends" shower and Jess was so sweet let an old lady like me, crash. So much fun. Great bunch of girls and it is obvious that Jessica and Matt are loved by many. Hard to believe that in a little more then 2 months I will have two married daughters. That sure happened fast.











And let's wrap this up with a combined Monday and Tuesday update, since they go hand in hand. Monday Miss Z and I spent most of the day at CHLA visiting a new Gastroenterologist. Who I loved by the way. Who, as of today, has emailed me now 3 times and called me twice. Anyway, our supplemental insurance for Zoey is a pain in the #@S. They are now requiring us to see a GI doctor twice a year in order to get her G-tube supplies. Seriously makes you want to say forget it and pay for things yourself. Which I must tell you, I think is the whole idea behind making things so difficult. And some people do say forget it. They decide they can't jump these hoops any longer and pay out of pocket for orthotics or diapers or whatever their child's needs might be, because it is ridiculous the lengths you have to go to to get things paid for. Not all things but certainly many. Actually I found myself crying hysterically on the phone to someone last month because I was just that  overwhelmed. Then I called my friend who has been at this 12 years longer then I, and I cried some more. This world is not for sissy's I tell you but when you are emotionally spent, it is just too much.

So the new doctor is a gem. Very laid back and easy and will take my lead. We decided to try a new formula  to maybe boost her nutrients and calories a bit. She is after all still on infant formula at 6 years of age. We drew labs to check on various things but mostly to check her milk allergy. He gave us samples of formulas that should be tolerated by children with milk allergies and we go on our merry way. Happy that, as long of a day that it was, I deemed it a success.


So Tuesday comes and we start with 2 ounces of formula diluted with 1 ounce of water and within 40 minutes, this is what happened:


Everyone and I mean everyone, cannot believe her reaction. They are so confused by the severity and what in it may have made her react, if the formula is indeed compatible with children who have milk allergies. The website for the manufacturer of the formula however states that it is NOT for children with milk allergies so why the manufacturer says that and the doctors and nutritionist say otherwise, is beyond me. But leave it to Zoey to do it her way. We are now waiting for the labs to get back and perhaps they will give us some insight on yet another mystery our girl has presented with.

I will call that a wrap. Zoey Grace has been super patient as I write this. Which for me, takes forever. The boys are home from school now and a certain nearly 10 year old is ticked off they have cancelled soccer practice due to air quality and he is fighting me about going outside to play.

Looks like I need to put out some fires of my own.

5 comments:

Anonymous said...

Wow!! and might I say first - your mother-in-law is loving it Heather, (I knew she would)!!!

Once again you had a very busy weekend with your "girls" Taylor & Jessica. Great photos.

As for Zoey Grace photo I was blown away (with sadness) at the formula reaction. Poor little angel! But - having said that - loved the video! She was having a super time!

Just hope those fires stay away

Bluebelle

Elizabeth said...

Wow. That camp site! Just wow! How can I get involved in that?

Anonymous said...

Good job, your mother-in-law.

krlr said...

So much I hardly know what to comment on!
- I remember the fires from a couple years ago. I flew into the LA basin at night, with the fires lighting up the hills & I could not stop the landing in hell jokes. Sorry to disparage your home but you have to know I have a love/hate relationship with LA. If they're still burning in a week, we'll have to talk about you coming to PV (long drive though, sorry, but fresh air?).
- Love to all your girls.
- Yay for awesome doctors... but that allergy is NOT ok.

Anonymous said...

Oh poor baby, definitely reacting to the broken-down whey in Peptamin! Some kids just CAN NOT tolerate it. Is Neocate Jr. or EO28 Splash an option for her? A friend's daughter also just recently started on Pepdite.

If you have time, check out the forums at kidswithfoodallergies.org

There is an entire section dedicated to families with tube-fed children, many who have severe allergies.