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.

A chronicle for the mother...and perhaps the grandparents

For my own enjoyment from time to time, I like to recap a little of what the kiddos have accomplished or are going through in these stages of their lives so I may come back to this post in months to come and say "Oh yeahhhhhhh, now I remember thaaaaaaaaaaaat."

Abby...Oh Abby. The kid is a blast. And spastic. But mostly a blast. She absolutely LOVED soccer this year, so she was truly bummed when she had to miss the last 2 games of the season...one to a rain-out and the other to the flu. The little miss has turned out to be a purty good soccer player, if I say so myself. She's tenacious and strong and can pretty much keep up with the boys on the kindergarten level.
Speaking of boys...Enter in Andrew. Andrew is in Abby's class, and the two have hit it off quite nicely. Let's just say that Andrew's name is mentioned quite often in the Ferrell household these days. The thing I like so much about Abby's school is that even in a larger city, the schools are sort of "community schools". Most of the kids that Abby is going to elementary school with will continue on into the same middle and high schools together. The families and kiddos that we are getting to know right now will more than likely still be around through the next decade+. So in 10 years, it might be quite comical to remind Andrew and Abby about the time in kindergarten when that they got in trouble in the lunch room for intertwining their arms and legs together and pretending like they were stuck together.Enter in Conner...Emma has a crush on Conner...
Abby and Conner played soccer together. They also go to the same school, though he is in a different class. Still, we see him and his family all the time...and nearly every time we see them, Emma always quietly utters "I just love that Conner." Maybe it is because he always calls out to her when he sees her...maybe it is because he runs with her at the school's morning mile...but whatever it is, Emma always says "I just love that Conner."Speaking of the morning mile, Miss Emma received her first foot necklace this week. Let me explain...for every 20 laps the kids do each morning, they get a "foot" charm for the necklace they are provided. Abby is about to get her 3rd foot. Emma...well, she has itty bitty legs...and she is only 3. She averages 1-2 laps a day, and we have been keeping tally of her laps at home. When I asked the school's PE teacher if I could purchase a necklace and foot charm for her when she reached 20 laps, she was more than happy to oblige. Because Emma...well, she is kind of like the little morning mile mascot around there. The big kids always call out "HEY EMMA!" when they see her and pick her up and swing her around. She has met about as many friends at the morning mile as her sister. She wakes up with gusto each morning just because she gets to go and walk around the track. She tires quickly and doesn't last nearly as long as her "friends", but she absolutely loves to get out there each morning. Nathan...oh, Nathan. He is talking more these days and really enjoying the little songs we sing each day. He understands almost everything, so it is extremely frustrating to him when he can not figure out how to tell us what he wants. It's a tough age for him...and yet, it is a fun age as well.

The past 2 weeks have been difficult for the little guy. When he is sick, everything in him struggles. He's sick again right now, and he just feels puny. And just like every other times he gets sick, his stomach seems to have shut down again. This is one of the most frustrating things we deal with...when his body is stressed, his stomach will not move the food he eats into his intestines. All day, he has retched after a couple of bites of food...something that is heartbreaking to watch and exhausting for his little body. Tonight, he took 2 bites of dinner and proceeded to throw up. His stomach just isn't working.

Thankfully, due to a GI appt this week, we have some new plans in the works for hopefully helping him when his stomach slows down like this. We have to do something to keep him from vomiting every single time he gets a cold or extra tired or whatever. The poor kid is down to 20.3 pounds now...we have lost every bit of weight he has put on in the past 6 months, and that is so incredibly frustrating. But the most frustrating part is seeing him refuse food because he knows it will make him throw up. I just wish I could help him feel better when he does this. Please continue to pray for the Owens family.

Wordless Wednesday: In touch with his feminine side

Or proof that a boy has older sisters...

Recap of last weekend

The kids were all fever-free and about to bounce off the walls nearing Halloween night, so we decided to take them up a down a few streets for some trick-or-treating. It only took Nate a couple of houses before he realized that if you knock on these random doors, strangers open and give you candy in your big round pail. Throw in a your own version of the mysterious saying your sisters were uttering in a trance-like state, and the inhabitant smiled even more and threw in an extra "you're so cute" piece for good measure. (btw, it totally melted my heart to hear the little guy say "tack uh tee" after he knocked on some of the doors.) He loved it.

The girls are becoming old pros at this cavity-induced evening...barreling through all the lit houses in the neighborhood with stealth speed, in order to gather enough sugary goodness to last until the their Bat Mitzvahs...or something of the like. The stash was indeed plentiful with loads of nummy kit-kats and minimal crappage. It was all around a fun night for the three little munchkins.

A few excerpts from our days of being quarantined to the walls of the flu-filled house:

Make an on-line slide show at www.OneTrueMedia.com

Prayer for this dear family...

First off, we are doing well. My fever broke today, and since I am the one bringing up the rear with this flu, I think we are over this virus. However, Nathan has a fever again tonight and a horribly runny nose, so I am suspecting an ear infection or something of the sort and foreseeing another trip to the pediatrician sometime this week. Other than that, we are doing very well.

I come to you tonight begging prayer for the Owens Family: http://www.gavinowens.com/. This is a family whose blog I have been following for some time now, as their 3 year old son has mitochondrial disease...and the mom is a photographer. Hits a little close to home.

Gavin is in his last inning of fighting this awful disease. His parents, along with the help of his team of doctors, have made the incredibly tough decision to move to the final stage of caring for their terminally ill son...just trying everything in their power to make Gavin comfortable. I can not imagine the pain these parents are experiencing seeing their son in this final lap of his journey, as just 6 months ago he was a smiling blonde-headed cutie waiting to tackle life. This disease has just progressed so rapidly over the past 6 months for this little guy. My heart hurts for this family. Really hurts.

I haven't mentioned the prognosis of this disease on this blog before. I don't particularly like to talk about it. If you look up the prognosis of mito, most websites mention that it is "variable". "Variable" is good. "Variable" has a lot of hope strung to its letters. "Variable" means that my son may outlive me. I like "variable".

But then I also read from a few sources, including a paper from the UMDF about mito and overview of the NIH's efforts with it, that children who are diagnosed mitochondrial disease under the age of 5 have a 20% chance of living to the age of 20. And that stings. And then I also read in Nathan's ER protocol letter that "mitochondrial disease is often, but not always, fatal." And that stings.

But what I cling to in those is the "20%" that live in the first statistic and the "but not always" in the second. What I cling to is hope. And what I cling to most is the God of hope...

"Blessed is the man that trusteth in the LORD, and whose hope the LORD is." Jeremiah 17:7

Yes, we do realize that this disease does not offer much hope for the future as we know it on this earth, but we do know a God who does offer MUCH hope for the future. Who offers ALL hope for the future. Who loves us and knows exactly what our future on this earth enfolds...and will always be there for whatever circumstances are to come. And due to that, my mind is at ease...and my heart is comforted. Like I have mentioned before, we have been instructed to "Be strong and of good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee withersoever thou goest." Joshua 1:9.

Nathan is doing well. He is enjoying life to the fullest right now. He, nor his sisters, realize the severity of this disease. And this will be the absolute first and last time I mention the prognosis of this disease on this blog. We do realize that it is important to be realistic about this disease, but we are also living with the hope that our God will intervene on Nathan's behalf by creating a long and influential life for our son.

But families who are losing their children to this disease constantly weight heavy on our hearts. Please, please remember these families in prayer. Remember the Cole family who lost their 8 year old son a month ago. And please pray for the Owens family in the coming days as they embark on the last leg of their son's journey on this earth.