More Photos for Mito

Here is another shoot that was dragging behind a few days in the Photos for Mito fundraiser. This so happens to be one of my dearest friends' families, so it was a very laid back session. The last pic is one of all the grandkids for their staunch-Gator fan grandparents. Must I mention how great it is to be a Florida Gator? :)

Only Florida's finest

In between wrapping presents, repositioning the ornaments from the bottom 2 branches to the rest of the lopsided tree, placing goodies behind the avent calendar doors, and trying to remember all the hiding places that the various gifts have called their home for the past month, I decided to edit some pics from the week before I got too far behind. Our Thanksgiving week was a really good one, as the kids enjoyed spending a few shorts days with their Grammie and Papa.
On the day after Thanksgiving, we made the trek to a local-ish farm that housed an orange grove. Through the rows of citrus, we dodged fire ant beds as we collected as many oranges, lemons, and grapefruits as our Publix bags would hold. Abby really enjoyed the mini-field trip and lessons on how to choose the fruit that seems to be at its optimal ripeness...
The other two munchkins...well, they were none too impressed with the awesomeness of picking fruit straight from the trees. Instead, they spent most of their time trying to figure out a way to get through the barbed-wire fence to the forbidden land.
They also tried to hijack the farm's equipment...
The scenery was gorgeous...the weather could not have been more perfect (though it could have been a little less sunny for better pictures), and the sky could not have been any more crystal blue. It was a day that was simply supposed to be spent doing something outside...just an all around amazing day...
Along with the lesson on fruit trees and various other plant schtuff, Abby also had her first experience with a port-a-potty...or as the kid who can't remember anything's name says "The Pizza Potty". This is what makes life so fun...seeing things for the first time again through the eyes of your children...
Pics from Thanksgiving day coming later this week...

A little break

I'm going to take the next week or so off from blogging. I have a lot on my mind right now with some decisions for Nathan, and I just think I need a break from a few things for a while. In the meantime, we will be enjoying some family for Thanksgiving, the start of Christmas music, and just watching our kiddos laugh and dance around the house. I hope you will enjoy the same this next week.

Abby showcasing the second tooth that fell outta her head:

Nathan complaining that we had not started our walk yet...don't ask about the poop colored bruise on his head. I'll just say that it involved a tad bit rough housing...with an exercise ball...and his mother. Not the most stellar moment as a parent. It was all fun and games until...

Happy Thanksgiving!

Heya Pilgrim

It wasn't until Emma and I had the classroom Thanksgiving feast with Abby's class yesterday that I realized that Thanksgiving is in a week. As in just a few days. So is it just me, or has life taken on at warp speed over the past few months. Sometimes it doesn't even leave room to sit and think about what happens day in and day out around here...it just goes by so fast. Morning, Night, Morning, Night, Rinse, Repeat.
Abby's Thanksgiving feast was so much fun. She had on the cutest little girl-pilgrim hat, and I was cursing myself for forgetting my camera. We had a pot-luck of all the fave thanksgiving food, where we were able to get a head's start on the stuffing of the bondunkadunk/thigh season. My mouth still drips with an absurd amount of slobber each time I think about the pumpkin pie the teacher made.
Artwork was displayed that showcased the seasonal "What are your thankful for?" turkey creations. On Abby's list of what she was most thankful...1) My family, 2) My friends, 3) Noodles. I'm thinking that her steady diet of Ramen Noodles has made a huge impact in her life.

Emma received her wish to be a kindergartner for a few hours. She sat in group time with all the other kiddos and listened to the story of the day, ate lunch with us, and then remained in the classroom for an additional hour so I could help clean up. She made her own friends and played right along side of them the entire time while Abby moved about her free center time with others. I've always known that Em was independent, but she even surprised me with how quickly she adapted and made her own friends in this element. She received lots of "Bye Emma"s from the class when we left, and the kid was beaming with pride. I may look into a preschool for a couple of days a week for Emma next year...she wants to go so badly, but I really do have a hard time letting them go off on their own so early. I'm selfish like that.
We had a good week with some friends from Indiana this past week. It is a family with 3 kiddos with mito, and they come down to Shands every year to see one of our incredible endocrinologists (for their hypoglycemic/glycogen issues), our immunologist, and a pulmonologist in our clinic as well. Their kids are right around the ages of my little munchkins, and they all have so much fun playing together each time they come down. I'll post some pics of their visit in the next couple of days (still working on those pics, Jenny).
We had a good appt with our pulmonologist yesterday, and he was definitely pleased with how well Nathan is doing on oxygen. I don't think I have mentioned this on here, but O2 is going to be a long-term thing for Nate. His body has made incredible progress since starting it, so there has been no talk as of yet if whether he will still be on it or not when he is older. One day at a time. He did say that he is not pleased with his weight at all, as he lost quite a bit during his flu/bronchitis stint and has not been able to gain it back yet. Our pulmo wants to schedule Nathan to have a g-tube placement after the first of the year, but after I consulted our mito doc about this plan, she had some different options...everything is still relatively undecided and up in the air at this point. And we are very hopeful that emycin will do the trick to make the guy extra hungry and be able to keep the weight on his skinny bones. He needs a good month.

Wordless Wednesday: Two is definitely better than one

Being a parent is hard...

The great news is that I have finished editing the shoots from Photos for Mito, so after a couple of days of getting all the pics onto CDS, I should have the CDs in the mail by Thursday. Thanks for being so patient, all ye fundraiser participants.
On the medical front, we have a new plan regarding Nate's GI issues on the docket. It has been a taxing battle seeing Nathan's stomach issues rising over the past few months, and we are at our wit's end with trying to get him to gain some weight...and keep it on. It's heartbreaking seeing him retch and vomit each time he is extra tired or even a little sick...and then stop eating entirely for a while. It's draining for us to see him go through it...I can't imagine how it actually feels in his little body.
There is one drug that he has had in the past to help speed up his GI motility, and he responded very well to it. But we had to discontinue it after a while because it is a drug that is potentially toxic to his mitochondria, and the current med that we are using just isn't working the same. Our wonderful GI has been diligent to figure out what we can actually do to help the little guy, and after numerous emails back and forth between her and our mito doc, they have decided to let Nathan try the old motility drug once again. The only catch being that we have to keep close tabs on how the medicine is affecting his mitochondria...meaning that he will need 6 different blood draws within the next month checking to see if his lactic acid is being affected by the med. My heart hurts for the little guy having to go through this. So often in his life, in order for something to help him, he has to be hurt in the process...I hate that. Sometimes it is difficult to accept these circumstances with a good attitude. I just wish I could take all the pain in his place.

"When I was your age...

...we had to actually watch the commercials. Every one of them. And we didn't have cartoons on all the time either, so we lived for Saturday mornings. And we actually played outside on train tracks and rode our bikes in the middle of the street and walked to the farmer's market to buy candy that cost a penny and orange coke that was 35 cents."

In this DVR-age, the kids have learned the wonderful ability to skip through all the commercials to get back to the "good stuff". So while we were listening to a long few minutes of commercials on the radio in the van this morning, Emma piped up "Mom, can you run through it?" When I explained to her that we couldn't skip through on our radio like we could on the TV, she instantly got the look of utter disgust on her face. I couldn't help but laugh as I explained what life was like when I was her age...not all that long ago.

What Floridians do on the first chilly day of the season...

Laugh all you want now...we'll be back in bathing suits at the end of February. Well, at least March. And in the mean time, we will most definitely be wearing our snow hats on our cold 60 degree days.

Dada!

The little guy in the fam believes that every male in the 20 to 50-ish age range shall be referred to as "Dada". I have mentioned to him that I would actually prefer him to refer to these complete strangers as "Mr." or even a "Hey you!", but he still continues to look each middle aged man directly in the eyes and excitedly proclaim "HI DADA!"

This mode of greeting has gotten quite a few laughs from everyone we have encountered under such circumstances. It has even gotten a couple of nervous glances from kid to me to kid to me. I'm seriously debating surprising someone someday with a request for some child support after the child to "dada" exchange.Nathan is doing really well right now. After yet another trip to the pediatrician for some antibiotics for Emma's ears, the ped listened to Nate's chest and said that he sounded a lot better than he did last week. He's definitely on the mend. Finally. A session with his OT today prompted her to make some additional calls for some more evaluations for therapy. The little guy needs more physical therapy for his legs/ankles/balance that have been weakening lately...his hypotonia rearing its ugly head once again. We are going to put him back in his orthotics to help with ankle stability and are awaiting another eval for more therapy and orthotics. Treatment for Nathan is always changing...just when we are in a fairly comfortable spot, things change. That is something that is so difficult to get used to.
The kiddos are good though...we have a really busy few weeks coming up with school, holidays, quite a few doctor appts, friends coming into town, family coming for a visit, and a partridge in a pear tree. Oh, and trying to teach the little-un that there is only room for one "dada" in this town and try to curtail the nervous glances our way.

Photos for Mito

Our first annual Photos for Mito was on Saturday, and it was just such an incredible day. The weather could not have been more beautiful the entire day, and the atmosphere was delightful. From a photography standpoint, the day could not have been easier. The church where we held the sessions had the perfect amount of shade and light at all times throughout the day...this made my job so much easier. It was simply an amazing day.
Jay and the kids came with me to set up early, and then they all went back home to hang out. I have to give kuddos to my dear hubby for watching the kids ALL day long. The following are a few pictures for sneak peeks for the families involved who signed the model release forms...
At the end of it all, we collected almost $1100 to send to the UMDF. With a goal of $500, counting the money we received brought tears to my eyes. It just feels so good to be able to raise funds and awareness for something that is so close to our hearts. Thank you all so much for helping assist in this fundraiser. Thank you. (This photo of me and one of my best friends, Rachel, was taken by the sweet Nicole Franklin...thanks Nicole!)
There is still quite a bit more work to do with editing and sending off the CDs to the families involved in this fundraiser, but has all been such a wonderful experience and delight. The plan is to make Photos for Mito a yearly event...probably at the same time each year (as there is only a small window of nice, cool-ish, rain-free weather in Florida). I will definitely give plenty of advance notice before the next one. Thanks again for everyone's participation and help! And for a bit of information that applies to the reason we desire to raise funds for awareness, reasearch, and treatments for mito...little Gavin Owens passed away while snuggled up between his parents tonight. He is now abiding with our Lord...with complete peace and happiness. Please keep his family in your prayers as they mourn the passing of their young son.