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.

Surrendering...

So, it was inevitable. My super immunity powers held out as long as they could, but the flu was bigger and stronger and just bullied my body into succumbing to the big bad virus. So far, I only have a low grade fever that is making my legs feel like they want to fall off joint by joint...but other than that, everything is tee-totally peachy. Don't ask me how I'll be tomorrow, as Jay's second day of this has been plain awful with a really high fever. At least the girls are perking up a bit now. Aren't they old enough to take care of their parents yet?

Looking on the bright side of everything, it was best I got this sooner rather than later in the week, as Photos for Mito is NEXT SATURDAY!!! I am so excited for it to get here, but I still have a ton of work to do in preparation for the big day. Thankfully, I was able to crank out some of the work today before the fever settled in...and the next two days will more than likely be spent doing just about nothing but popping fever reducers, so I may be able to stay ahead of the game. Anyway, I wanted to share a little something I made today that I am having printed and will showcase on our mito table at the fundraiser:

Oink, Oink

It ain't over 'til the fat pig sings...right? Or am I just delirious from the copious amounts of fever reducers I have given all day coupled with the amount of time I have had steaming hot girls laying on my chest? Yep, the girls came down with Mr. Piggy flu today. And to top that one off, Jay also came home with a fever. I am the lone survivor so far in a land with many swine casualties. To be honest, we knew this was going to happen at some point. With as many Dr. appts we go to, and Abby in school, and needing some sort of food from the grocery store every once in a while...a woman just can't purell her chitlins enough when they stick their fingers in their mouths every 23 seconds. Seriously though...the flu is simply awful down here. So beware all you wanting to vacay in the sunshine state.

A Nafey boy feeling much better after 2 days on tamiflu:

Today has been a rough day for the girls. When they both woke up with fevers and realized that they were going to miss the only carnival...the one that everyone has talked about since the beginning of school...that the elementary school had today, they started to cry. And then when they realized that they couldn't partake in the very last soccer game of the season tonight, they started to sob. It was a heartbreaking moment in the Ferrell household. We're not even mentioning the fact that Halloween is right around the corner. Their fevers have been super high all day and their headaches are awful. Both girls have hit all time highs with their temps...Abby at 103.4 and Emma at 105 (orally)...both while on Motrin piggybacked with Tylenol continuously all day. When Em was 105, we immediately put her in a cool shower and then made her wear Nate's cooling vest for quite a while. That brought her temp down to 103.5. They are sick, sick girls.
The good thing (well, good for us...not sure who all we infected along the way) was that the girls and I were able to attend a trunk or treat at a local church last night where they had loads of fun and received quite a bit of candy in the process. The girls put on their costumes a few minutes before it was time to leave, and I instantly regretted not making Abby try her costume on previously. Turns out that the hand-me-down Dorothy costume that was labeled as a size that should fit a second grader (for crying out loud) was quite a bit skanky and escort-ish when she actually had it on. All attempts to get her to wear last year's monkey costume failed as monkey costumes are "so last year, mom". So Abby decided to go to a church trunk or treat dressed as the Wizard of Oz skank. All that was missing was some bright red lipstick and fishnet stockings. Score.
Abby (and her best friend Maddie) partook in their very first haunted house where I was sure that they would squeeze the blood right out of my hands. They came out unsure of what just happened but very excited that they did the ritual a lot of kids do at this time of year. And Emma and her main man Zachary spent their time at the petting zoo...in Emma's words "petting the goat's bodunkandunk". Yep, that's my child.
Emma spent a good portion of the night running as fast as she could so she could showcase her super powers...because of course, she was SUUUUUUPER EMMA! This costume could not suit her more. I just laugh at her every time I see her wear it. Em was quite perturbed that she didn't get to go to the haunted house with the big girls. When I told her that she would have freaked out, she said "No mom, I not freak out because I'm SUPER EMMA!" Yeah, uh-huh. The girl wouldn't go near a few of the trunks that had candy because she was freaked out by the hanging spiders and scary pumpkins. Super Emma, hmmmmm.
Nateman stayed home with Jay. He is doing great now, but he still isn't completely up to par. The IV fluids and tamiflu really kicked out this flu quickly for him, and all that is lagging behind is his energy level. Today, he was pretty much back to normal but still slept a good deal. This has been a nasty bug, but we are so thankful at how well Nathan has responded with the treatment...it has obviously saved us a few days in the hospital with him.
Who knows how the kids will be on Halloween. Our hope is that they will be fever free for at least 24 hours so they can go to a handful of houses for trick-or-treating. But if that doesn't happen, I'm sure we can figure out a different plan that will ease the disappointment a bit. Gosh, I hate this though. What a time for everyone to get sick.

Wordless Wednesday: She's her father's child

Teaching a child healthy eating habits: Fail.