Monday, December 28, 2009

6 years


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!

Saturday, December 26, 2009

Christmas...the first half


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...

Thursday, December 17, 2009

Skulls rock!, Merry Christmas!, and Sayonara!


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


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.

Wednesday, December 16, 2009

V.I.P.


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.

Monday, December 14, 2009

Funny how the internet works...


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!

Thursday, December 10, 2009

Nafey-magic


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.

Wednesday, December 9, 2009

On a warm December morning...


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...

Monday, December 7, 2009

'Tis the season


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!

Saturday, December 5, 2009

Chiquita ba-what?


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.

Thursday, December 3, 2009

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


...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.

Blog Archive

Followers

 

Life with the Ferrells Copyright © 2008 Green Scrapbook Diary Designed by SimplyWP | Made free by Scrapbooking Software | Bloggerized by Ipiet Notez