Saturday, October 30, 2010

Gooney Bird


I have recently found that one of the greatest things about being a parent is that if you time it right, there are opportune times when it is absolutely okay to act like a lunatic. Well, a lunatic by adult standards, but it is totally okay in the kid world. So essentially, these are times when you can act like a kid again.
Abby's class finished reading the book Gooney Bird Greene this week and wrapped the week up with a full blown Gooney Bird party, complete with outlandish outfits. It was a blast...and absolutely hysterical to see all the crazy clothes everyone was sportin'.
The other fun part about this day was that I had offered to volunteer to help in the classroom during the party...meaning that I spent copious amounts of time finding my own Gooney Bird outfit and loving every minute of it. I love the times when it is completely okay to act like an idiot. Seems that I fit right in during those times.
Abby had no idea what I would show up wearing (ideas about me wearing my undergarments on the outside of my clothes was frowned upon by her, for whatever reason), so it was fun to see the look on her face when she came into the classroom. I am totally holding onto these moments as long as I can before she starts becoming completely and utterly embarrassed by every little thing I do. It was such a fun day, and I can't say enough about her class and teachers this year. They are simply incredible and have so much love for all of their kiddos. It's been an amazing year so far, and I love being able to be a little part of it.

Wednesday, October 27, 2010

Wordlittle Wednesday: Halloween


Halloween...the time for
fun
and family
and fabulous outfits...
food
fun with cousins
and friends
Halloween...the time when smiles are in abundance and all diets are thrown out the window.

Sunday, October 24, 2010

Won't ever be able to live this one down


As a general rule, we make numerous decisions daily. Most of our decisions are centered around a well-rounded thought process supporting the reasons behind such decisions. But then there are sometimes where you just don't take the time to think of all the dreaded consequences that could come from your actions, and the stupidity that you try so hard to hide just comes glaring through.

Such a thing happened today, and I will be the first to take full responsibility for the events you are about to read...

Heading to church this morning, we realized that we had forgotten to take Nathan "potty" before we left the house when he declared that he had to "go"..."really really bad" were his words. Not wanting to stop on the side of the road, I did what every well respected redneck would do...I grabbed an empty sippy cup. And he did have to go...really really bad. For fear that the contents would slosh out of the cup with any sudden movement, I stuck the lid back on the sippy cup and set a mental reminder in the left corner of my cerebral cortex to dump the contents when we stopped.

Obviously, the left corner of my cerebral cortex is already full because I totally didn't remember to empty out the pee cup when we got to church.

Fast-forward a few hours (we old baptists like to get our church on, and today was lunch Sunday). I buckled Nate into his seat and happened to look up at Emma making the most awful face with spit running down her chin. "UGH! What is that?" she said with utter disgust as she placed a slightly less-full orange sippy cup back into the cup holder beside my seat. "Did I just drink pee-pee?"

My father used to tell me almost daily that I wasn't truly mature until I thought of everything that could happen from my actions. I'm guessing I still have a ways to go to maturity.

Wednesday, October 20, 2010

Houston


Lately, quite a few of my thoughts have been centered around the amazing workings of God in our life...in the many aspects of our lives, but particularly those surrounding us since Nathan's birth. A year and a half ago, I met with an amazing doctor at the mito symposium in DC, and she gave me her info so that Nathan could enroll in the mito clinic in Houston. A year and a half ago, we needed help and direction and someone to be able to give us many of the answers we longed for on a daily basis when tackling a complicated disease of that our son had recently been diagnosed. A year and a half ago, I had no idea the relationships and friendships that would ensue from the decisions to seek help in Houston...I had no idea about the love and joy and heartache that would encompass our lives from these decisions. A year and a half ago, I had no idea about the amazing plans God had in store for this chapter in our lives.This week has been a wonderful week. During our last visit to Texas in April, we had met and become fairly close with the Knight family, along with other families in this region. We were been extremely honored to be able to stay with the precious family this week. My heart has sunk quite a few times this week in missing Samuel running around with Lauren and Nathan, but it helped so much to see the pictures of him everywhere...his gorgeous angelic face looking at you through a photograph.
Ben and Missy and Lauren are simply incredible! Through the grace of God, they are teaching countless others through their actions in innumerable ways. Our week with them has been amazing, and I know that both Nathan and I will miss them terribly for the 6 months until our next visit. Nate and Lauren were two peas in a pod this week...playing together, sitting beside one another when together, holding hands walking to and fro. It has been quite cute to watch. Missy and I just laughed and laughed during our visits...the kind of laughter that makes your cheeks and stomach hurt. Amidst the laughter, we also had serious and heartfelt conversations, sad and reflective ones...but more than anything, we laughed. It's amazing how God places people in your life to make such huge impacts on you and to teach so much about his blessings. I will miss my dear friend.
Nathan had a really great week. As he gets older, it has been nice to see his excitement during these trips...the airplane ride, seeing friends, remembering the doctors from past visits. On the medical front, we had quite a few questions in his care answered. He will now be on a continuous dose of iron to help combat against his iron deficient anemia...it is clear that he can not retain iron stores without constant supplementation. We know that iron is a free radical and poses its own risks against patients with mito, but we are at the point where the pros seem to outweigh the cons in this treatment. We also ran quite a few metabolic labs to try to help figure out some oddities with the little dude metabolically (and with absorption issues, etc) and genetic studies again. It would be so nice for us and for future generations if we could pinpoint his genetic mutation, but like his mito doc mentioned during our appt, only about 10% of the patients have a confirmed genetic defect to support the diagnosis. We are still so much in the infancy of this disease...
Our appt Thursday was with the doctor in the clinic who specializes in pulmonology, immunology, and allergy. Since we had a trial time off Nate's asthma meds over the past couple of months, we have seen a few "flags" that he was indeed benefiting from the asthma protocol we had him on since he was really little. I had always questioned the diagnosis of asthma from our home pulmo because he was so small when he was diagnosed...he wheezed during activity and when sick, but I just didn't know if that diagnosis fit. Since being off meds, he hasn't wheezed too terribly much, but he does cough during exercise, retract deeply, and drop his sats. So, we have started back on flovent and added xopenex instead of albuterol, and she has officially diagnosed him with asthma...obviously, sometimes a mother is wrong. :) She also said that we needed to increase his O2 liter flow from 1 to 2 liters per minute continuously to help with his desats, periodic retractions/tachypnea and increased exhaustion cycles. He had labs to check to see if he was keeping his titers to his vaccines (he tends to lose those titers and needs to be revaxed...all as a result of his immune deficiency due to mito) and other labs checking immune function, and a flu shot.
We absolutely adore the doctors in the mito clinic here. Its amazing how doctors like these can steal your heart so quickly. We have wonderful doctors at Shands here at home, but going to Houston is just different...they know so much more about this disease, and they have answers to the many questions and treatment plans for the confusing symptoms. I always leave there so uplifted by the level of care and support we receive...and the love they show to Nate. He was old enough this trip to be able to talk with the doctors some and show them how to use the ipad. He was really great this trip...well behaved and so sweet.
Along with being able to spend a lot of time with the Knights, we also had the wonderful privilege of visiting with another mito family from Knoxville, TN who was there for their appts as well. Eric was so precious...he and Nate shared cars for a bit before Nate fell asleep for a majority of the visit. It was so wonderful to get to talk with Eric's mom and grandma. We also had the chance to meet Cooper and his mom, Sarah, for a bit. Cooper underwent an intestinal transplant about 6 months ago in Pittsburgh, and they have recently made it back home to Houston. They are currently in the hospital, so we were able to visit shortly, but I never had the chance to take any pictures. It was so good to finally meet them! And finally, we were able to attend a family/sibling support group of the Houston chapter for UMDF, and it was really great to be able to meet quite a few more mito families from that area.All in all, it was a wonderful trip. We miss our friends so much, but it is good to be back home. We'll be back in 6 months, and I look forward to seeing everyone again!

Sunday, October 17, 2010

An addendum to Thursday's post


Emma came to me this morning complaining of something being stuck in her ear. Any guesses on what it is?? Think "snow".

Saturday, October 16, 2010

Houston Bound


Nathan and I are headed to Houston early Monday morning. This is our every-6-month recap of appointments in the mito clinic out there, and we are looking forward to the week. We will have the wonderful opportunity to visit with old friends and new ones. Nate is finally old enough to realize that he will be flying on an airplane and is so excited about that...but directly after his excitement waned, he made sure to tell me "I not want to be hurt" in talks about his upcoming trip.
Conversations of his anxiety of pain are fairly new to us...meaning, we have only heard of him talking about this in the past week. I had an appointment with one of my doctors this week that Nathan had to attend, and the first words out of his mouth while entering into the waiting room was "I not want to be hurt". I assured him that this appointment was for me and not him, but he repeated the phrase in the nurses station and exam room.
As a mother, we do everything we can to keep our children from pain. We baby proof our houses, intervene in childhood disputes, reign them in as they climb too high on various objects, even try to intervene in friendship/relationship issues...we hate to see our children in any kind of pain, both physically and emotionally. It hurts my heart to know that Nathan fears pain. And it hurts even more to know that it is inevitable in his life...even more than his sister's lives. He will hurt...even more than the belly and muscle pain that he complains of on a daily basis...he will endure more needle sticks, pokes, prods, and tests than most suffer from in a lifetime. There is no way around it. Unfortunately, this encompasses his life.
As parents, we are instructed to guide our children in the ways they are to go. That becomes a bit harder when so much pain encompasses their lives. We then teach them to be hearty...brave...strong...resilient. But that is difficult to watch...and we secretly ask that their pain be inflicted upon us instead of them. What I wouldn't give to encompass the physical pain Nathan has daily onto my own body...as a mother, it hurts like nothing I can describe to see him in pain.
But that can't happen. This is his life. This is our life. This is our journey. Our journey that God has set for us to trek. And during this journey, I will try my hardest to teach my children to go in the ways God teaches and has shown to us. God has given us the incredible foresight to enjoy and love every single moment together...to wrap our arms around our children, to kiss, to laugh, to look into each other's eyes, to touch, to be thankful for all of this...God has given us the ability to excessively enjoy every single moment. This...is a blessing like none other.

Thursday, October 14, 2010

Not in the parenting handbook


A mother has lots of duties. Cooking, cleaning, wiping bodunkadunks, making up beds, washing clothes that I swear are NOT dirty, making drinks in sippy cups and cleaning up the messes they make because the no-spill valves are either non-functional or still stuck up in the cupboard. Yes, a mother's job is a busy one.
So, while a mother unloads the dishwasher and calls friends to line up child care for when she is going to be gone, she totally expects her children to sit on the sofa with their hands folded neatly in their laps while they look out the window and contemplate the wonders of God's nature. Children are usually that perfect...especially mine.
She does NOT expect to be distracted from her phone call with exorbitant laughter and look up to find a living room full of snow. And she does not expect that snow to be thousands of little staticky foam pellets that once housed themselves inside a lovely lady bug bean bag that she would later regret purchasing.
She does not expect her children to throw the foam pellets into the air while yelling "It's snowing!!!" and making snow foam pellet angels on the carpet. She also does not anticipate just how glue-like these cushion pellets are, as they stick to every little thing around.
And to top matters, she does not realize that staticky foam pellets like to migrate and stick to warm, moist places, which would mean that the mother would spend an exorbitant amount of time manually picking the pellets from her children's "nether regions"...those suckers seem to really like cracks and crevices...and nostrils.
And as much time as it took to clean the foam balls, it was totally worth my two littlest ones pretending that it was indeed snowing in our livingroom. They now know not to EVER unzip a bean bag again, but it was indeed fun while it lasted!

Wednesday, October 13, 2010

Wordless Wednesday: Random shots from the past month


Tuesday, October 12, 2010

Quintessential Boy


We have been in the trenches of potty humor for the past few days as the little Nafey dude has figured out that if he changes certain words or phrases to have burps or toots in them, he will get a gargantuan laugh from his sisters...and perhaps a little snicker from me. What can I say; the middle school girl in me still thinks that burps and toots are hilarious.

Sorry. They are.

Especially coming from a 2 year old.

Saturday, October 9, 2010

Photos for Mito: November 6, 2010



I am extremely excited to announce the second annual Photos for Mito fundraiser!! Last year's fundraiser was an incredible success, and we were blessed to raise more money that I ever thought possible, especially in our first year.

All money collected during this fundraiser is donated to the United Mitochondrial Disease Foundation. According to umdf.org, "Since 1996, the UMDF has provided nearly $7 million in grants to support the research that may lead to a less invasive diagnosis and ultimately a cure. UMDF's mission is to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families."

This is an organization that is very near and dear to our hearts. They have provided much needed information and support for our family through our journey with this disease. Through UMDF and 2 dear friends with children affected with mito, we have been able to create a group for our state that helps provide support, information, and resources to those affected with mitochondrial diseases in our state and those seeking information of these disorders. I feel very responsible for helping the United Mitochondrial Disease Foundation in any way I can, and I am so delighted to be able to use the talents God gave me to help in this mission.

Our second annual Photos for Mito fundraiser will be held on November 6, 2010 at Trinity United Methodist Church. Due to the popular demand for these slots, most of the 12 slots have previously been filled. **I do have one remaining slot open at 2:00 on the 6th for anyone interested. Please email me at amberferrell@gmail.com if you are interested in booking this session in our fundraiser. **See bottom for up to date info about remaining sessions.**

UMDF has supplied us with a fundraising website for Photos for Mito this year, equipped with the ability to donate through the web if you desire. Simply click on the "Donate Now" button if you would like to help in our fundraising efforts and are not able to make a photo session. http://www.umdf.org/site/c.cvKVIcOPIlJcH/b.6279397/k.BF85/Home.htm

I always hated fundraising in school...I even hated asking my parents for money for various items. Asking for money is definitely not my forte'. However, I do know that money is what funds research and research is what creates trials and trials is what fuels cures, and I pray that we find a cure for mitochondrial disease in Nathan's lifetime. Thus, I ask that you support the United Mitochondrial Disease Foundation monetarily in helping us find a cure for mito...for Nathan.

**Edited to add...ALL sessions are now booked. Please stay tuned for next year's Photo for Mito fundraiser if you are interested in a photo session.**

Wednesday, October 6, 2010

Snapshots from The Swamp


In the past, we have been notorious for being the best fair weather fans around...that's what happens when you follow your husband south through the SEC stopping here and there for degrees at different schools. When in Kentucky, do as the Wildcats do. When in Georgia, sick 'em Dawgs. And you have to admit that as much as any of you may despise Florida, we have the coolest mascot around. I mean, who can really top a gator?
I have now lived in Florida more than a year longer than I lived in Kentucky, so as we were preparing for the big Kentucky vs. Florida football game a couple of weeks ago amidst the wanderings of our friends on what team we would be displaying on our shirts, we could matter-of-factly say "Go Gators"! We are indeed bonafied Gator fans now...through and through, much to the chagrin off all the family and friends left both in Kentucky and Georgia. I could say that we are Florida fans because they pay the mortgage...or because its impossible to live in a college town and not root for the home team...or because we are surrounded and simply have to root for them...or because they are just really good at sports and make it easy to cheer for them. Really all of the above.
We love living in our town, and we really enjoy getting to experience and help the kids experience the neat attractions that make our town special (excluding any Quran burnings that may be planned). The football game was so much fun! The atmosphere was unreal and electric and sent a strange sense of euphoria through your mind for the duration of the event. I've been to college football games before, but being in The Swamp on game day was unlike any other game I had ever experienced.
As if we may not have known already, we realized that night that Emma is our wild and crazy chitlin, as we witnessed her scream and high five and hoot and holler at every little chance she got. She was soaking everything up and loving every minute of it. Abby enjoyed it for a little while, but the poor kid was exhausted after a long week of school...a night game was a bit much to put her through, so we left shortly into the 4th quarter.It was a good little getaway with the girls, and it was even better that we did indeed beat the Cats this game (though don't even think about bringing up the royal bodunkadunk whooping we received from Bama last weekend). We look forward to returning to the Swamp to see it all again next year.

Blog Archive

Followers

 

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