Tuesday, December 28, 2010

7 years


My dearest Abigail,

You sat in my lap this evening, holding on to every word coming from my mouth as I relived the night you were born. I enjoy thinking back to that precious night that changed our lives forever. I can still see those big, bright eyes peering into mine for the very first time. It seems like only yesterday...

I am being completely honest when I say that I can't believe you are 7 years old. I can't believe it. I vividly remember being 7 and thinking I was big stuff...and now to have a daughter who is that same age is hard to fathom. Looking back over the past year in pictures, I was struck by how much you have grown physically in the past few months. You no longer have any inkling of babyness in your face...such a bittersweet milestone.

Not only have you grown physically, but intellectually as well. My goodness girl, you are smart! It amazes me how fast you learn and how much desire you have to cram as much knowledge into your brain. I absolutely love that about you. You are excelling in school and doing above and beyond what most kids your age are doing academically. You love to read and write...in fact, one of the only things you requested for Christmas was "lots of books".

You also grew mentally this year. It was a year full of tough questions for you and tough answers for me. "How exactly did I come out of your belly?", "Why are some kids mean?", and "Why does Nathan have to have mitochondrial disease?" It was a year of tough revelations in your young life...most of which I hoped you would be a lot older before the understanding caught up with you. But like I mentioned, you are so smart and are figuring life issues out a whole lot earlier than I planned or imagined.

You are incredibly compassionate in so many ways. You can not stand to see anyone upset and will do everything you can to please those you love. One day this summer as you attended vacation bible school at a local church, you came home with a prayer bracelet you had made with numerous beads signifying those you wanted to keep in your prayers...children with a disease, people in the hospital, people without a home or food, and your family. You wore that bracelet for ages, and I smiled each time I saw it as I thought about your sweet compassion for those in need.

My sweet girl, I pray that this upcoming year will be the amazing blessing with you that the previous 7 have been. As you grow older, I see you trying different communication tactics (specifically sassiness) as you try so desperately to figure out where you fit in this difficult land of growing up. It's a tough road sometimes to know what to say and how to say it, how to act and what to do. But please know that we will be here beside you as you start to travel through some tougher years ahead, secretly trying to hold your hand and navigate you through the tough spots. We pray that God will give us all the guidance to direct you in the ways he will have you go in these upcoming years.

We love you, our precious Abby. You are a beacon in our life each and every day. Happy 7th birthday, sweet pea.

Wednesday, December 22, 2010

Home...well, kinda


Nate was released from the hospital today, and he was so happy to come back to his Nana and Pawpaw's house. In his own words in his hospital bed as he greeted his dad this morning before we left, "I all done here, daddy!" It amazes me to see his thinking grow regarding dr. appts and hospital visits as he grows older. When we were heading to the hospital, he asked "I gonna be hurt?" I told him that he would be hurt (IV insertion) for just a little bit, but it was only so special medicine would make him feel better. I knew he understood that because he would talk about his IV later as his "medicine". He hardly moved and only fussed a little when they were inserting his IV, which is always a bad sign with him, as it showcases how sick he truly is...but that IV is truly amazing to his body during certain times. Nate did not complain at all about being in the hospital and seemed to completely understand the necessity of the stay.

So, we got the release from Kentucky Children's today, and he was so excited to be reunited with everyone. He took a big nap this afternoon and played like crazy this evening. He is truly doing so much better, and we are so thankful for that. He remains of antibiotics (WBC count was quite elevated, along with his absolute neutrophils which signifies that he has some infection somewhere). Our guess is that this was an infection induced mito crash. His GI motility just isn't what it used to be, and we are seeing significant changes each time anything stresses his body.

But he is doing well now, and we are hopeful that we will enjoy the rest of our Christmas trip without significant adjustment. As Christmas approaches, I ask that you keep two families that are very close to us in your prayers. Alex, our little mito friend is still intubated in the PICU in Houston...please keep him and his family in your prayers. And please remember the Knight family, as they are experiencing their first Christmas since Samuel's death. My heart hurts for these two friends during this time.

Monday, December 20, 2010

Update


Nathan is doing much better today. The D10 and Zofran mixture really helped turn things around for him. He was even able to eat some dry cereal and a couple of graham crackers today. The question is still "what happened?" to make him so sick so fast. We don't think it is a virus, as he has no fever or diarrhea. However, his WBC was elevated, his liver was a bit enlarged and his bowel sounds were hypoactive (meaning lower than normal). My guess is that his GI system just took a nose dive.

We are highly impressed in the doctors here at Kentucky Children's and their knowledge of mito. The attending today said that Nathan seemed to exhibit a typical mito crash (as we have seen a few times before, but he hasn't gone downhill this quickly in a long time), and we may not know the exact reason to why his body all of a sudden went into crash mode. They are very kind and considerate here. It always makes you a bit nervous to take your child into a new place where they do not know him and may not know much about his disease, but I could not be more happy with the care my little guy has received here.

If the little guy continues to improve and starts drinking on his own (only had 3-4 tiny sips of juice today) and starts peeing (only peed once in the last ~20 hours), he will be released tomorrow. Hopefully this is just a small bump in the road on this trip, and we can all get back to enjoying our extended family this Christmas season. But I, for one, and very thankful that my parents live within a few short miles of a wonderful children's hospital...and so thankful that my little guy seems to be doing a lot better.

Prayer request


I knew I said I wouldn't post on our trip, but I have a couple of sudden prayer requests...

Please keep our precious mito friend, Alex, in your prayers. He became really sick last night/today and is now intubated in the PICU. Please keep him and his family in your prayers.

Also, Nate suddenly got sick tonight. He has felt great since we arrived in Lexington...ran around after church tonight playing, and then when we got back to my parent's house, he started vomiting after a bit. After throwing up 4 times within about 15 minutes and through the zofran we gave him, we knew we needed to take him in for fluids. They got us back quickly, but he continued to vomit numerous times until the IV zofran kicked in. He is being admitted to UK Children's Hospital. Hopefully he will turn a corner fairly quickly and be released in time to enjoy his grandparents and Christmas.

Friday, December 17, 2010

Signing off for a bit...


We ended our festivities of the season here with a pajama day at Abby's school and a huge classroom breakfast for the little guys. Emma and Nate also joined Abby's class all decked out in warm PJs for the breakfast, and I completely forgot my camera to capture the fun. To round the day out, Emma had school, Nate had therapy, our beloved home health nurse came by to check all our equipment before our long trip, and I spent the rest of the afternoon packing clothes, meds, and the kitchen sink for our cross-country journey to visit family for the holidays.
I did receive another call this morning from a doctor in the ENT clinic, and she confirmed what we originally thought...the biopsy from Tuesday was inconclusive. I will undergo an additional surgery under anesthesia to remove one of the larger lymphnodes when we return from Kentucky in a couple of weeks. I should know an exact date within the next week.

So, this bids you all goodbye for a while. I will have a birthday post for Abby's 7th birthday on the 28th (can you believe my baby is going to be 7??), but I do not plan to post any before that date. I do, however, plan to enjoy the company of my parents, siblings, in-laws, nieces and nephews...along with those of my husband and little munchkins. I am really looking forward to this extended time of rest and reflection on God's goodness to our family over this past year. Merry Christmas to each of you.

Thursday, December 16, 2010

'tis the craziness of the season


Yesterday was a day packed full of activities for the Ferrell chillins. We started the morning at Abby's "snow day" at school. Living in the deep south, snow is pretty much a novelty the children see on movies and in pictures of the northern regions. A "snow day" is completely foreign to them...they may have a hurricane day every few years that shut down the schools, but snow...not so much.
This is where Abby's amazing teacher comes into play (have I mentioned how much we love her??). She created a "snow day" for the kids by transforming the classroom into a make-shift winter wonderland, complete with hanging snowflakes, a construction paper fireplace, and a place to make snow angels in craft snow.
The entire day was built around the snowy theme. They had snowball fights with crumpled paper, ate their very own snowballs (powdered donuts and marshmallows), made hot chocolate, ate snow cream (shaved ice, condensed milk, and vanilla), and constructed their very own ice sculptures (from marshmallows and toothpicks). It was a day that I know all the kids will remember for a very long time.
Directly after helping out with Abby's snow day, I met Jay and Nate down the skreet a little for Emma's preschool Christmas production. It was absolutely adorable seeing all the pre-k kiddos sing their songs.
We then joined the rest of the parents in the room for some cake while our little munchkins gave us bags of gifts they have been creating the past few weeks. It was such a special time, and Emma was beyond excited to finally be able to show us what she has been trying so hard to keep secret lately. My favorite was a special little bread cloth that showcased her handprints...I just love those things to look back on as they grow bigger.
A few hours later, we let the kids open their Christmas gifts from us. Since we are leaving Saturday morning, we decided to let them open their presents a bit early so they can have some play time with them before our big trip. This was the first year that everyone was old enough to "get it" when it came to opening presents, and it was a blast seeing their faces as they opened each gift.
Thank you so much for your prayers and sweet messages regarding my last post. I received a call from one of the residents in the ENT clinic today. If she was reading the path report right, it looks like they did not receive enough lymph tissue for testing. The tissue they did receive showed quite a bit of inflammation, but there was no testing done on lymph tissue. The resident said that she needed to talk to the doctor I see so we can make the next plans, which will include scheduling an additional surgery to remove one of the other enlarged lymphnodes. I should receive more concrete plans sometime tomorrow, but I am guessing that the surgery will take place when we return home from the holidays. I'll update when I know more.





Tuesday, December 14, 2010

Choosing to See


I sat in the waiting room reading "Choosing to See" by Mary Beth Chapman. It was a bit eerie how much her words mirrored my own life in certain ways. In her book, she talks about how she had certain expectations of how her life would weave into the way she had perfected it in her mind. Only, her life turned out to be nothing like she had previously envisioned. It was hard and heartbreaking and exhilarating all at different times...it was so much more difficult and yet so much more rewarding than she had imagined. It was rattled with trial after trial. And in these trials, she and her family grew in amazing ways.

I found myself relating in so many ways to her words...all while I was facing another trial to shake up our family...

I have always been open and honest about Nathan's medical struggles, and I have reached the point where I feel that I should be open about my own recent medical issues. As mothers, we tend to undermine our own struggles and wait until the last minute to take care of ourselves...it's part of being a mother. We tend to worry about our children and put our own issues on the back burner. We also tend to hide our struggles, as not to cause worry to those we love. It is with that disclaimer that I apologize to anyone who may be offended that I did not share the following information with them previously...

About mid-summer, I had a lymphnode pop up at the base of my hairline. I often have lymphnodes pop up with illnesses and infections, but this one was different. It was really hard and fixed, meaning it was not movable. In dealing with Nathan's chronically swollen lymphnodes, I know what is okay for lymphnode to feel like...and what is not okay. My new little node was not okay. However, it was an isolated finding, so I ignored it.

About 3 months ago, I had 2 new and larger lymphnodes pop up on the opposite part of my head...again, hard and fixed. All three swollen nodes are occipital nodes. I also started getting pretty intense headaches originating in the back of my head. I was a little more concerned with more rock-hard nodes popping up and not going away, but this was a time when we had a LOT going on. It wasn't until the headaches got pretty bad when I made an appt with our family doc.

Understanding quite a bit about the medical world and showcasing my amazing skills with Captain Google, I was not surprised when lymphoma was at the top of the differential. The doc ordered lab work and a chest x-ray, which all came back normal (labwork is more of a rule out process for infections in this case and a chest x-ray was to see if the lymphnodes in my chest were swollen, which they were not). Shortly thereafter, I met with an ENT who specializes in head and neck tumors. Since I have no other symptoms indicative of lymphoma (unexplained weight loss...gee, I wish!, night sweats, and fever) he wanted to make sure there was no underlying infection somewhere causing the nodules to swell. He put me on a 21 day course of antibiotics. There was no change in the lymphnodes.

Unfortunately, one of the earliest warning signs of lymphoma are painless, hard, fixed, and enlarged lymphnodes in the neck, armpits or groin areas. Mine are in my upper neck...the occipital region. This morning, all bundled up from the sub-arctic temperatures that are unfamiliar to our area, I walked the familiar path to the hospital I have visited with Nathan countless times in the past 3 years. Only this time, I had no children with me. I underwent a punch biopsy of one of my funky little nodes, which is one of the strangest sensations I have ever had (you can actually hear it being ripped out...totally nasty!).

The procedure was painless due to the wonders of lidocaine. Unfortunately, the doctor (who I love, btw...he's from Russia and is totally hilarious) wasn't quite sure if he extracted enough of the nodule (apparently, lidocaine distorts everything, making it difficult to decipher what you are extracting). He said that if he did not get enough of the node, I will need to undergo a more complex surgery under anesthesia, where he will make an incision and remove one of the larger nodes.

However, if the procedure was successful today, we should get results by Friday. If it is not lymphoma or any other type of cancer that has moved to my lymphatic system, we can assume that swollen nodules are benign. Obviously, that is our prayer.

That being said, God has blessed us with a wonderful sense of peace regarding whatever news we will be given. It is simply amazing to think of all the ways he has prepared us for the trials we face in our life. I believe that dealing with the severity of Nathan's issues have prepared us greatly for whatever we may face in the future. God has blessed us with abundant grace to face each and every trial we have met so far, and we know that he will continue to lead and direct our minds and hearts.

But our prayers are that the findings are benign. Lord willing, we should know more soon...

"Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness." Isaiah 41:10

Monday, December 13, 2010

A bit of a medical update


The little man of the house has been holding his own lately. We have been trying so desperately to keep him well for our upcoming trip to Kentucky. This trip is tough on him to begin with, so we are hoping to start on a good note.
We have recently added a new med to his daily mix...L-Arginine. Over the past 8 months or so, Nate has been struggling with high ammonia levels that make him feel horrible. Shortly after he turned 2, we started noticing a dramatic difference in his personality and behavior. Some days he would be our sweet little Nafey boy, and other days he would be a rude and cantakerous little monster. I figured that the terrible twos were just extra hard on him.
However, this past spring he also started sleeping so much more and just laying around when he was awake. He would go through times where he just had no energy and preferred to lay down and watch everyone play around him. It was so difficult to see him like this. We knew something wasn't right, but mito is an energy deficient disease...and when you aren't quite sure what is causing certain symptoms, you just chalk it all up to mito. But I knew it was something more...something had definitely changed.
Around this same time, his stool started to take on a noxious chemical odor. I had to bleach the bathroom several times just to get rid of the lingering fumes that the little guy was expelling. At times, it smelled like someone had knocked over a bottle of cleaning fluid somewhere. It was (and still is at times) absolutely noxious. Our docs here had no idea what it could be but said it was definitely "something metabolic". Dr. K in Houston said that it was definitely ammonia. His blood test showed that his ammonia level was quite elevated once again (it has been mild to moderately high in his labs for 6 months), and she started him on L-Arginine.
Ammonia forms when protein is broken down in the gut. The liver then turns the ammonia into urea to be excreted in urine. Unfortunately for Nathan, sometime over the past year (I'm suspecting after he was so sick last winter...before that illness, his ammonia levels were usually under 20) his liver stopped being able to adequately turn the ammonia into urea. High ammonia levels in the body are toxic, especially to the central nervous system. I have to be honest in saying that this bit of info makes me nervous...Nathan has always been so bright, and one of my greatest fears with this disease is that his mind and brain will suffer at some point. Thankfully, the arginine (which binds and removes ammonia from the body) seems to be working well for Nate.

He also had a good GI appt today...his weight is holding steady at 25 pounds since his appetite has wavered lately. But he's a short little guy at the same time, so he's totally proportionate. The nurses at the clinic gave him a sweet little gift today...he named it "Sweetie Pie". They are all so good to him and make his visits quite enjoyable. This little guy sure is spoiled!

Sunday, December 12, 2010

One last photo shoot...


When I was little, I wanted to be a mommy when I grew up. I also wanted to be an Elementary School Teacher and a Pediatrician. As amazing as it seems, the Lord has blessed me with all three "jobs". I am a mother. I am a teacher to the children who look up to me for guidance. And I am a doctor to a little boy who requires continuous medical care.

With ambitious goals my entire life, I have had a hard time sitting still in one position for too long. My hands require constant work. Boredom and laziness has always been my fear, so I have required myself to stay busy throughout my work as a wife and a mother. Computer work came easy after the housework was finished, but photography was my passion. I was intent to capture each and every moment I wanted to memorize with a still picture. With much reading and studying, photography came a bit more natural to me. I adored capturing moments in time, and I likewise adored helping others capture their family memories in photographs as well.

My photography turned into a semi-business...

And then Nathan was born.

I do not have to explain how much work it takes raising a child with special needs. I know that you can imagine that on your own. But add that into the mix of raising 2 precious girls who love school, soccer, ballet, play dates, and anything that correlates with the previous mentioned...indeed, my life is full.

My dreams as a child have been fulfilled. I am a mother. I am a teacher. I am a doctor.

However, I can not be a photographer anymore. That just doesn't fit into the mix that is our life at this moment. So as of this moment, I will not take anymore photo sessions for an undisclosed time. My photography website will be erased in time, as it is a bit expensive to keep. I do, however, wish to continue our Photos for Mito fundraiser each fall, as this brings forth a good amount of money for a disease that affects our family so much. But for all else, I apologize...

As a mother, I believe it is healthy to admit to others when you are not able to keep up with your duties...and in this I admit...I can not do it all. I trust you all understand.

In leaving this incredible passion to provide other families with generation-lasting photographs, I leave you with a few shots from my last shoot...a precious little newborn who I adore:

Wednesday, December 8, 2010

Wordless Wednesday: Orange season


Alternate title: pictures that may indeed humiliate my children when they get older.

Tuesday, December 7, 2010

Learning from the past


We had a wonderful time in Tampa this past weekend. My dad flew in from Kentucky to preach the meeting at El Bethel, and it was so good to see him. He recently made a lengthy trip to Africa, and it was so wonderful to hear his stories and experiences from that land. We usually go many months without seeing family, so it is so nice to say "see you in 2 weeks" when saying goodbye.

We also had the great privilege of staying with my grandparents, who live a little outside Tampa...Plant City, to be exact...you may see their little town on the news these days as the farmers try so desperately to save their strawberries from this freeze snap by watering them each night to put a protective layer of ice around them.

Anywhoooo, living in South Georgia as a kiddo, we would make the 6 hour trek down to my grandparents' house quite a few times throughout the year. I have copious amounts of memories climbing trees with my cousins, running along the huge empty cable spools my grandfather brought home from his job as a lineman, eating fried eggs, toast and homemade strawberry jelly every morning, and catching lizards and attaching the cute little reptiles to our ears, nose, and lips. Being at my grandparents' house was always full of fun and adventure growing up.

But this time was different. Long gone are the days when we would spend numerous hours catching lizards...time is just much too precious now. With my grandfather about to turn 80, I have realized that time with them may not be as infinite as I once thought as a child...and I have also realized that I don't know much about my grandparents. Growing up, I always heard bits and pieces of stories here and there, but I have suddenly had the urgency to hear these stories and more from the mouths of Papa J and Grandma Bea.

So for the past couple of visits, I have tried to ask as many questions as I can in order to hear as much about their childhood, marriage, young life, middle age, and now. In doing so, I have so many amazing stories stored away in my head...stories about my grandfather's "performances" as a young tike in my great-grandfather's gas station/grocery store, how long he was in Korea during the war, the unusual way he met my grandmother and told her he was going to marry her within just a few minutes of meeting her, their life raising their 4 boys and then why they decided to adopt a baby girl...and got twins (my mom and her sister), why my grandfather has so many scars on his chest and belly, and so many other stories that wind together to create the life of my grandparents...and subsequently, 3 generations spawning from them as well.My favorite story is one that is both surreal, hilarious, and remarkable. It still makes me tear up when I think about it. I want to write down this little synopsis of the events as told to me, so that I never forget the amazing working of God in the lives of those I love...

My grandfather had just gotten back from the battle lines of the Korean war and was stationed in Fort Sill, OK. During his time off one day, he visited a drive-in, walked inside, and sat beside a beautiful stranger reading a newspaper and eating a bowl of chili. The gal worked at the drive-in but was currently on her break and having a bite to eat. My grandfather, always being the showstopping performer, grabbed the stranger's spoon and took a bite of her chili. Shocked and appalled at this man's behavior, she told him to leave her chili alone...and that she worked there and would get him his own chili if he wanted some. He said that he did, so she walked into the kitchen to get him a bowl of chili.

My grandfather followed this woman into the kitchen, abruptly kissed her and told her that he was going to marry her...but first, he promised another girl that he would take her out on a date that night. He said that after that date, he would date no other woman except the one he just kissed...Bea.

Obviously, Bea thought this man was a lunatic, and who wouldn't! However, after that day, he was pretty much everywhere she looked. Worn down by this man's persistence and swept up by his love, the two were married 2-1/2 months later...Julian and Bea Cunningham.

Shortly after, the new couple learned they were expecting a baby. They made the trip to Florida so that my grandmother could live with my grandfather's family while he was finishing his duties at Fort Sill. I can't imagine the uneasiness on both my grandparents and great-grandparents during this meeting of their new daughter-in-law and reunion of their son. I can imagine that my great-grandparents were wondering what in the world had gotten into their son...making an emotionally charged decision directly after being in intense battle for a year, marrying someone he barely knew, and bringing the pregnant wife to live with them for a while...I can only imagine what they were thinking. But this is that part that gets to me every single time I think about it...

My great-grandfather, who died of acute leukemia even before my mother was born, put his hand on the shoulder of my scared grandmother and said "Honey, if Julian loves you, we love you too." What a remarkable statement and showing of affection. That statement, uttered almost 60 years ago, is profound and filled with so much emotion. That statement of faithful love has affected so many generations since.

It is truly remarkable what we can learn from our families if only we ask questions. I am truly thankful for having this weekend with my grandparents...I am truly thankful for them in my life.**pictures from my cousin and his wife...thanks Gary and Danielle!!

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