Life with the Ferrells

In the land of SCIS-SOR...

2010-01-03T23:06:00.003-05:00

Once upon a time, there was a fair prince who was in dire need of a haircut. His ole' moppy head had gotten the best of him, and while his mother wanted a little boy with long beautiful curls around his ears, his father insisted on the boy looking like him...almost bald-headed and all (love ya babe!).
So, the littlest little Ferrell was sat upon his throne, which justsohappenedtobe a uniquely made porcelain thingamabob that squirt water out of its mouth. Some would call it a sink. But we will call it a throne for the time being...for the little prince...who has been so graciously bribed to sit upon it for about 20 minutes for a dear price of one sucker, to which he has so graciously obliged.
However, after the 20 minutes of scissoring and burring, the dear prince was not as obliged. He threw a curse word or three in the language of aged2, but we let him slide just this once...
...cause after all, doesn't his new "do" look so dang cute?

Christmas...the second half

2010-01-02T16:57:00.008-05:00

We arrived home on New Years Eve from our many days of gallivanting across the beautiful Kentucky countryside. The second half of our Christmas trip was spent at my parents' house, where the company is always...errrr...interesting...
It twas a great visit and went by way too fast. The kids enjoyed learning how to put on coats, playing with cousin Hailey, critiquing how their uncles' rooms smelled, and pestering the poor cat during their every waking moments.
The eve of my little one's 6th birthday, she lost her second top tooth...making her a pirate no more. She has the cutest little lisp ever...especially since I know it is temporary and will be going away once the teeth return. However, I am enjoying the big ole' gap while we have it before the quintessential "too big for her little face" adult teeth come through. Here's to entering into the awkward stages of growing up.
Another treat for the kiddos was a small snowfall blanketing the ground, which just so happened to be exactly what they had been wishing for during this trip. We wasted no time getting outside to catch snowflakes on our tongues...a must for the kids since seeing it once on a Charlie Brown special. And to make it even more special, Aunt Bethany had given the girls a gorgeous makeover before the snow came, which gave them such a wonderful street-corner appeal for the must-have snow pics. Gotta love me some hot pink eye shadow.
After the kids were tucked away soundly under humpteen dozen blankets, my littlest sis and I decided to take a late night sledding trip. My parents have one of the crappiest lots in the city when it comes to mowing, but it just so happens to be the best when it comes to sledding since the back yard slopes at about a 278 degree angle. With cookie sheets and tupperware tops in hand, we conquered the hills, ran into a stray tree or three, and wet our britches just a wee bit...afterall, we aren't as young as we used to be. I seriously haven't laughed that much in ages. We took the kids out the next morning before the snow melted too much, and they created lasting memories bundling up in multiple layers of clothing, sliding down the hills, and watching their fingers turn an eerie shade of dark purple. Turns out that holey thin gloves don't hold up too well when they get wet...who knew?!Emma spent most of her time outside sampling snow, to which she was reminded over and over not to eat any snow even mildly resembling the shade of yellow...or brown...or green...or basically anything but white. Basically, we just taught her some life-long lessons that she more than likely will never learn in our home state.
Hailey was such a doll. She has the sweetest smile and loves to congratulate herself with a round of clapping each time she thinks she deserves it. Of course, this would create a room full of applause...because she is just so stinking adorable.
We celebrated Abby's 6th birthday at Gattitown, which is a suped-up Chuck E Cheese without the annoyance factor. The kids had a blast, and amazingly enough, the grown-ups did too...take that Chuck E.
It was great to see my littlest bro on his break during basic training. He left again today to head back to Fort Sill, OK for a few more weeks of basic and some additional classroom time. We sure are proud of him taking this step to serve our country.
So after being gone from home for almost 2 weeks, we decided that it was probably time to get back in to our regular routine...meaning that the kids couldn't go 3 days between brushing their teeth anymore. We made the long trek back home to the deep south with a really sick little girl in tow...poor Emma got sick a couple of days before we left and is still sick. She has been running 103-104 temps for 6 days now, which prompted a quick trip to the after-hours doc within an hour of our arrival home New Years Eve. The poor girl is still miserable and exhausted, as this virus has taken a ton out of her. Nate came down with a runny nose yesterday and woke with a fever this morning, so we are keeping a close eye on him as well, although he seems to be doing really well with it all. Anyway, good trip and great visits with friends and family...but it is nice to be home again.

6 years

2009-12-28T00:05:00.001-05:00

My dearest Abigail,

You ended your 5th year with a bang when you lost your second top tooth, officially making you an honorary snaggle tooth. You spent the rest of the evening trying to say words starting with "s" and singing the "All I want for Christmas" song. You were about as cute as they come all evening. When putting you to bed, I carried your long lanky body curled up in my arms like a baby and realized that my knees would be shot if I gained an extra 50 pounds, and we went through the perfunctory "6 years ago tonight..." talk. I love those moments with you.

This year has been a momentous one for you...lost teeth, kindergarten, making friends. I look at you and simply can not believe my eyes at how grown up you are now. Seeing you at school makes me realize how independent you are, as you walk through the halls like you have been there for years and transition into different aspects of your school with ease. You love school...absolutely love it. It is simply incredible seeing you excel and enjoy it this much. One of my favorite times of the day is when you come home and we curl up on the floor and talk about your day. I know it can get annoying having to relive these intricate details of your day, but it means so much to me to hear your recap...giving me a little window into your world away from home.

The night before your last day of school before winter break, you started crying when you realized that it would be over 2 weeks before you could see your friends again. You have always been our little social butterfly, and this year was no different. You have gained numerous good friends this year, and you are constantly trying to get to know others more. In the academic part, you are just thriving! You are reading at a 1st grade level and doing small math problems. After a lot of practice, your handwriting is improving drastically, and you are enjoying writing stories with words that are spelled right phonetically...having that kindergarten twist to the spelling. It's a blast seeing these developments in you.

We have always been taught that it is important to be more beautiful on the inside than in the outward appearance. My dear girl, you are simply gorgeous on the outside...but you are even more gorgeous on the inside. You have one of the sweetest hearts. It tears me apart to see you cry at movies now, but it also makes me smile knowing that you are so soft on the inside. You are constantly worried about what others think and if everyone is happy, and it worries you to death if you know that someone is upset. I love your tender heart.

You are one the sweetest sisters...you are a little mama to Nathan, always getting him the things he wants and showering him with love and attention. It is so sweet to see your relationship with your little brother. And even though sibling spats come naturally with someone so close to your age, you and Emma generally get along really well. You play your own little make-believe games together and talk about all sorts of things. Emma looks up to you more than you realize, and it is mainly because you include her so much in your personal activities. My heart melts every time I see you grab for your little sister's hand so you two can run side by side during the morning mile. You introduce her to all of your friends and beam with pride while doing so.

My sweet Abby, my little snaggle tooth girl, my big 6 year old...I love you sweetheart. Happy Birthday!

Photo and video editing at www.OneTrueMedia.com

Christmas...the first half

2009-12-26T20:46:00.005-05:00

We are currently on round 2 of our Christmas trip, meaning that we are in Lexington, KY now, but we had such a great time in Clinton the first part of the trip. The kids loved being able to spend some quality time with their cousins, and we enjoyed the fellowship and rest from the week. Here are a few pics from our visit with the Ferrells and Sargents in Western Kentucky...

Jay's aunt/uncle/cousins from Memphis came up one day, and it was so great to catch up with all of them...

Emma watching bear-bear in the washer...

The kids played treasure hunt one day and loved it...

Skulls rock!, Merry Christmas!, and Sayonara!

2009-12-17T22:16:00.002-05:00

This would be Daddy's Christmas present to the Nateman...
I can't say much (except that it is too stinkin' adorable on him) because I bought him a snow hat with a mohawk on it a few weeks ago. We are so not the skater/mohawk/skull type of family...that is, until they started to look so cute on our kiddos. Never say never...that's all I gotta say.

Oh yeah, and MERRY CHRISTMAS! From our family to yours...
We're heading out for our Christmas trip to Kentucky to visit family, and we are hoping to at least catch a few snowflakes on our tongues while we are there. Blogging will be sparse at best, but I should at least have a little birthday shindig up for Abby's birthday shortly after Christmas. I can't believe my baby girl is about to be 6. Anywho (sniff, sniff), MERRY CHRISTMAS!!!

Back to the Basics

2009-12-17T14:57:00.003-05:00

While shopping the other day, the girls and I made a pit stop in the restroom. After the bidness was done, I told Emma to wash her hands. She looked down inspecting the details of her hands and said "No mom, I only wash my hands if I get poo-poo on them".
Bear-Bear hasn't been in too many pictures lately because he spends most of his days in the girls bed for fear that he will get lost one more time and be banished to the attic for who knows how long. When Abby turned 4, we made her forfeit her blanky at night time...that was back in the day when we worried about the kid carrying it around until she was 30. Funny how the things you worry about change with time and experience. Regardless, Bear-Bear will more than likely be a bedpartner for a bit longer than our previous "4 year old" rule.

While Jay was sewing him up the other night...yes, my husband does the sewing around here. The last time I sewed something, I couldn't thread the needle, so I ended up sewing up a hole with dental floss. However, I am very happy to say that the floss has made it through multiple washes and is still holding up like a charm...a very minty charm. Okay, so Jay was sewing bear-bear up and Emma was right under his nose tightly grasping Bear-Bear's worn out paw. When Jay asked her to give him some room to work, she replied "I have to hold his hand so he won't be scared." The arguer of the family may be a stinker, but she sure is a cute stinker most of the time.

V.I.P.

2009-12-16T21:01:00.002-05:00

When I was in school, it totally stunk it up to have a summer birthday. Everyone else got to bring cupcakes and wear the birthday hat on their actual birthdays, and I was given an extra day at door holder. Abby messed up her "birthday at school" plan by coming early and making her entrance 3 days after Christmas...not a summer baby, but just as tough. The good thing these days is that regardless of when the kiddos are born, they are awarded an entire week that is all about them...their VIP week. This week was the pirate's VIP week.

Oh, pirate? Yes, I obviously birthed a pirate wannabe. Any chance she can sing the "All I want for Christmas" song?
The VIP week consists of a poster of baby to present pictures displayed in the classroom all week, getting to talk about things that are important in their life, having cupcakes delivered for the whole classroom, lunch with mom or dad (Jay says that he would rather work for the mob than eat in an elementary school lunchroom again, so I'm up for that job), and just be doted on a little more than usual. She has loved it.
Her cupcakes were super easy to make, and believe me when I say that "easy" is the number one thing I look for with cooking. Abby loved them, and I felt quite Martha Stewartish afterward. I dropped off the cupcakes to her teacher and ran as fast as I could before getting the stink-eye for bringing chocolate on chocolate ooey-crumbling goodness. Word on the street is that the lunch room janitor waved the white flag after cleaning that mess.

Funny how the internet works...

2009-12-14T21:38:00.003-05:00

Over the years of enjoying the interweb, I've "met" many women who I would label as friends. The ""s in that sentence mean that I haven't really met met them, but merely intermet them. We talk online, worry about one another, celebrate (internetishly) eachother's victories, and maybe even talk on the phone. I sound like a dork, I know. But really, these relationships impact my life in ways I would have never thought possible. One of my dearest friends is someone I met online, and we talk on the phone nearly every day now. I truly have made some incredible friends from all across the interwebacommunication world.

Having a kid with "issues" just opens that internet world up even larger, as we search for others who are going through life at a similar pace and experiencing the same daily struggles as we do each and every day. Thankfully, we have been able to meet some of these other families who have a permanent job caring for a child with mito. And by meet, I mean really meet...like not in parentheses world, but in real life. Or IRL, for the tech savvy.

Meet...the Elliott family (well, part of them coupled with 2 of my rugrats):
The Elliotts are from a bit more northward and were heading down into the land where we still can wear shorts in December, and they so graciously stopped by for a few hours so our two "hose-noses could meet", in the words of Courey (the mom), which totally made me laugh hysterically. Linden has mitochondrial disease. He is a little over a year older than Nate, and barring a few details, their lives are almost carbon copies of each other to an extent. While the kids ran from room to room, tangling up eachother's oxygen tubes and having a grand ole' time, we sat around and talked biopsies, lab work, type 1 fiber predominance, GI dysmotility, liver stuff, MOM enemas, ports, cooling vests, and whatever else came to our minds. I don't think we finished a conversation, but we sure did start a lot. It was just so fun to talk to someone who "gets it" totally.
At one point, Linden came waltzing through the living room, and Courey said "Hey, put your bag of bile back in your backpack", to which we both looked at each other and cracked up while muttering "Is this really our life?" and throwing oxygen tubing over our heads while the kids circled the couch. A few minutes later, she said "No, we do not throw potatoes in the house." Now, that's a lot more normal, right? But really, it's all normal. Somehow, somewhere along the road, everything becomes so very normal...even the bile and O2 and ports and meds and watchful eye for temperature problems and...and...and...it just becomes normal. And it is so good to see another family whose normal is the same to an extent.
Aniya and Emma hit it off really well. They played and did dress up and played some more. It is great how they can adjust to every situation as well and just flow with it.
Nathan walked up to Linden one time and started studying him, and then he pointed to his own cannula attached to his nose. He's never seen another kid with one. It was neat getting these two together...they share a special bond, whether they know it now or not. A mito bond...not many are like them, so I am glad they have each other. Thanks for making the effort to come over Isaac, Courey, Aniya and Linden...we truly did have a wonderful time with you all!

Nafey-magic

2009-12-10T22:08:00.003-05:00

We ventured out to the med plaza this morning to see all of our favorite nurses and one of our favorite doctors: Nate's neurologist. It was a loooooooong, but great visit. From a neuro standpoint, the little guy is doing just great. His tone is still low, but greatly improved since he was a baby. And his muscle weakness seems to be what is causing his funny run and asymmetrical chest muscles. Our neuro also reiterated that it is imperative that we aggressively treat even the most minor of illnesses with Nathan, as times of illness is when this disease can be thrown into a downward spiral of regressions from which he may not bounce back. It's always scary having that looming over our heads, which is why we are super vigilant each and every time Nathan's gets sick. But thankfully so far, Nate has bounced back relatively well from his tough bouts of illness.

It is always so wonderful to talk to our neuro, as he seems to know this disease more than any other doc in these woods. I am constantly amazed at God's work in having this one neurologist overseeing Nathan's care from when he was just a few weeks old. When it takes years for so many others to be diagnosed, our neuro caught the red flags when Nate was just 4 months old. God is so good.

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On a warm December morning...

2009-12-09T14:58:00.003-05:00

The morning mile starts at 7:00 every morning...which means that everyone has to be dressed, fed, medicated, and in their seat belts by 5 minutes to 7. (We live really close to the school.) It's no small feat to get everyone out the door by this time each morning, especially without raising your voice at someone (usually the lollygagger first born). But it is totally worth it once we see those smiling faces and itty-bitty legs running around the dirt track.
The little guy is doing a lot better. Aside from some balance issues that seem to be due to weakness, some of his regular post-illness stomach issues, and a really bad case of the grumpies, he seems to be doing a lot better. The illness left just as fast as it arrived, so we are happy about that. Nathan had a few abnormal labs when we were in Houston...one that was significantly elevated was one that related to his liver function. Since he has had issues with liver labs in the past, we were a bit concerned about this one. Thankfully after some retesting, this lab came back normal! Even though I was suspicious of the original reading being an error (it was over 2700 and should be under 400), it is still such a huge relief to hear that his liver function does indeed seem to be fine right now. Phew!

Another encouraging bit of news was that his CO2 level was normal for the first time in ages! Nathan has pretty much always had low CO2 levels, as it was his body's way of compensating for his high lactic acid levels. Since being on oxygen supplementation, his lactic acid levels have been normal and his CO2 level is also normal. Not low, not high...normal. Again, a nice big load off my shoulders knowing that his body is doing amazing in so many ways with the O2 use. So aside from a different liver function lab that is often elevated in his bloodwork (due to the disease process), Nathan's labs were almost perfect. Ahhhhhhh...

'Tis the season

2009-12-07T22:01:00.002-05:00

I have to say that one of my favorite parts about this time of year is watching the pure excitement and joy through the eyes of my children. We put our tree and decorations up a couple of days after Thanksgiving. The next morning, with coffee in hand, I just sat and watched the lights reflecting in the kids' eyes as they laid beneath the Christmas tree for what seemed like hours. I remember those days. I remember that joy. And I love reliving it again through them.
The little guy is pretty sick right now. He has been looking a bit under the weather for a few days This shot was taken a few days ago...he always looks rough for a while before we realize if he is just having a mito day or if he is getting sick. This time around, he was getting sick. It hit him hard and fast like it always does...fever then vomiting due to gut shut down and then misery. He had eaten so well last week, and now we are starting all over again with his motility. It's a bit disheartening at times. His wonderful ped prescribed some zofran for him today so we could try one last measure to keep him home during this illness and not have to go in for fluids. So far, the zofran is doing the trick! He is drinking and keeping it down, and he even ate a few bites of food tonight. Now if we can keep reigns on this insanely high fever of his, I think he will be fine at home. We are hoping and praying that he stays well on our trek up to Kentucky at Christmas!

Chiquita ba-what?

2009-12-05T17:04:00.002-05:00

Emma: Mom, can you open my banana? And don't kiss it.
Me: Don't kiss it?
Emma: Noooo, don't quish it.
Me: Oh. Don't squish it. Say 'sssssssssss-quish'.
Emma: I can't say dat one berry well. Just don't do it.

On the third day of December my true love gave to me...

2009-12-03T20:50:00.006-05:00

...a TV for my bedroom. The televisheeeon in our bedroom kicked the bucket many long moons ago, so we have been living daily life with one tv in the house for a very long time. 3 computers, but only 1 tv...egads. But really, I didn't realize how much I had missed watching the shows I had tivoed while I was folding clothes until I had the TV back...and it was soooooo nice. With a capital NICE.
So, this could possibly be the post of all randomness...first bit of random: Jay grew a goatee. And then he shaved it off. It was too itchy and hairy, but it was a nice mix-em-up for a couple of weeks. So, when he had the goatee, he took Em to her first Gator football game...and she luuuuuuuuuuuved it. Or in Emma words, "It was awethum." Which just so happens to be Emma talk for "awesome". My girl gave me a huge hug after the game and proclaimed "I saw Tim Tebow! And he was awethum!!"
Thanksgiving...was awethum! Jay's parents made the leeong trek down here and Wandy and Bwudder Jimmy came and ate the ooey goodness that Thanksgiving dinner brings. And then we all sat around on the driveway for hours and laughed about old times and solved the future's problems. It was indeed a wonderful day. Emma...has earned her 2nd foot for her morning mile necklace, which means that she has tallied a full 10 miles of running/walking/galloping so far this school year. She is purdy darn proud of her feet on her necklace and will show anyone around her great accomplishments...But what she shows everyone...EVERYone right now...are her ears. Specifically, her earRINGS. Yep, the kid took the plunge and got her ears pierced last Saturday. And would you believe that I have not taken any pictures of them yet? No stones, please. Abby was the one who talked her into the big step during our big girls shopping day, and even though she knew it would hurt, she said she was good and ready to have holes.

The kid talked incessantly as they were doing the prep work. She talked and they laughed and she talked more and they laughed more. And then they poke the holes in her ears...and she cried. And cried. And CRIED. So much that I am quite sure that anyone in a 4 store radius will not be getting anything pierced in a very long time. But after about 10 minutes, the kid turned a corner and was so happy that she took the plunge.
Abby...well, she has 5 feet for her morning mile necklace, meaning that she has run 25 miles. Enough to be able to participate in a city marathon thingamajig in February. She's doing outstanding in school and loving her friends these days.

Absters got an early birthday present last weekend since she is usually bombarded with ALL of her Christmas and Birthday presents at Christmastime. She received a shiny new pink bike...put together by her littlest bro. Her old bike has been growing smaller and smaller over the months, and it has been way past time for some new bigger wheels for the chica. She loved it...I think. Of course, she has to be at the age where excited emotions are definitely not shown as brightly...a precursor to teenagedom.
Nathan...is doing relatively well right now. His motility drug trial is going great, as his lactic acid level has not risen any yet and he seems to be eating a bit more. Score more for some fat on those skinny bones. He has also had 2 more meds added to his regiment, meaning that the poor kiddo is getting 14 doses of meds a day now. He had some labs come back abnormal from our appt in Houston, and he needs some repeated on Monday. All I'm saying is that I sincerely hope that one of the labs that came back extremely elevated was just a lab error, as it was really, really elevated.
Other than all the routine medical stuff that doesn't seem to let up, the little dude is doing pretty well. He has added a couple more words and many more levels of tantrum to his agenda, which has shown us that he is edging ever so closely to the age of 2. Seriously? He's a sweetie...and a stinker...and a booty head...and adorable...all in the same 5 minutes. Yep. Almost 2.

Wordless Wednesday: True Love

2009-12-02T21:20:00.001-05:00

More Photos for Mito

2009-11-30T20:51:00.003-05:00

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

2009-11-29T21:46:00.005-05:00

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

2009-11-20T22:21:00.002-05:00

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

2009-11-19T21:33:00.004-05:00

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

2009-11-18T20:31:00.001-05:00

Being a parent is hard...

2009-11-17T15:58:00.004-05:00

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...

2009-11-16T13:06:00.003-05:00

...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...

2009-11-12T13:08:00.002-05:00

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!

2009-11-09T20:45:00.002-05:00

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

2009-11-08T23:05:00.008-05:00

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

2009-11-05T20:47:00.004-05:00

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.