Wednesday, December 28, 2011

8 years


My dearest Abigail,

8 years old. You turn around twice and 8 years pass by. I can remember being pregnant with you like it was yesterday. I remember the first time our eyes met and the first time I held you. It all seems like it just happened.

You have grown so much this year in so many ways. I love hearing you describe different things that you have read or learned and almost be able to see the wheels in your brain turning. You are so smart. It amazes me to see how your mind works and how you are constantly thinking about how the world works. I love watching you grow in knowledge.

You still have such a sweet heart. You hate to see others in stress, and you always try to cheer people up when they are down. Your love and care for Nathan is unlike anything I have seen. You have a special bond with him and take it upon yourself to make sure that he has everything he needs. You are such a good big sister to Emma and Nate.

Your are an amazing girl, Abby. You have a wonderful heart and are a really special kiddo. I love you, my sweet Abigail Nicole. Happy 8th Birthday.

Saturday, December 24, 2011

Christmas trip phonetopraphy, round 1












  

Thursday, December 15, 2011

My little dancer



Wednesday, December 14, 2011

The craziness of wintertime


So, Abby has pnuemonia. So much for whatever I had being seemingly non-contagious. It seems that a potent, nasty virus has invaded this house, and we really, really hope it left after Abby. Whatever this is seems to camp out as a high fever and invade the lungs. Out of everything we have had the past few years, I am the most concerned about Nate getting this bug. We are supposed to leave for our long northern bound Christmas trip this Saturday, and I am really nervous about what may lie ahead for us. I really hate feeling like the other shoe is about to drop.
Abby is now on a good antibiotic and hopefully will break this stubborn fever soon. We are also doing regular chest percussions on the poor kiddo because her xray also showed atelectasis. Hopefully she will be back to good in no time. Although watching TV a lot more than usual is a blast, she is sad that she has missed out on this final last week of school before the Christmas break.
In an ironic twist, Nate had a regular follow-up appt with his pulmonologist today. We absolutely LOVE his pulmonologist, and although the little guy was a bit cranky from a lack of a nap during the visit, it was a good appt. It was also really great to finally meet the new chair of the department and talk extensively about all the weird ins and outs of mito with him. Like all the rest of our docs, he was great! I am always impressed with our doctors' inquisitive natures and zeal to learn about mito disorders, especially the ones here new to Nate (there literally aren't many we haven't seen at some point before), and therefore fairly newish to mito disorders...especially the disorders with Nathan's presentation. We left once again thankful for the amazing doctors employed by our children's hospital.We have such a great team here.
I also picked up some labs when I was there that the little guy had done last week. His lactate was normal once again, but his pyruvate continues to be quite high. I don't think Nate has had a normal pyruvate in all his life. His liver labs were elevated...in addition to him having some random issues with hypoglycemia lately, I am not surprised that his liver may be struggling a bit more lately. In conclusion, his IgG is once again low, and he seems to have lost most of his response to his pneumococcal vaccine once again.. Even though we know the little guy is struggling in different ways, it always seems to be more apparent when we get his labs back. But even amidst it all, the Nafey boy continues to do well. He's hanging in there...eating more than he has in quite a while and still quite energetic. These are times where I am glad that we look at the patient and not the lab work in regards of treatment. I really hope and pray that he can get through the wintertime without problems with illness that can quickly set him back.

Sunday, December 11, 2011

Tebowing


Nate made it on the website tebowing.com: http://tebowing.com/post/14019734545/tebowing-for-a-cure-with-his-stuffed-puppy

Its pretty neat to see him on that site, and I do have to admit that he is purdy darn adorable with his little Tebow puppy.

Friday, December 9, 2011

Who turned the calendar to December?


Its kinda funny when you are in the smack dab middle of the intense craziness of the holidays and your body decides to throw a monkey wrench in every single one of your plans in the shape of something called pneumonia. Seriously. How in the world does a healthy 30 year old contract pneumonia completely out of the blue?
It was a tough 5 days of a fever that was beyond intense at times and a cough that continues to tone these "post-3 babies" flabby abs, but I can now say that I have survived the worst illness of my entire life. Literally. And I learned a lot during those few days...like it is imperative that you keep an empty bladder when you are coughing up a lung, and that having all of Nate's medical equipment around can be helpful to others than just him, and that I married the absolute most amazing man in the whole world who held down the fort and did anything in his power to keep me comfortable. Well, and if you have to cancel plan after plan after plan for a few days, it will all still be okay.
The great thing is that this pneumonia does not appear to be viral whatsoever, so that means that the kids are safe. I do admit that I was pretty darn worried Nate would get this before we knew what it was. I knew it would more than likely be disastrous if that happened, so I was relieved to find out that he should be safe from it. Now, to find out how I all of a sudden succumbed to the lung infection. Obviously, we don't do medical stuff by the book in this hood.

We have one more week until our annual trip to Kentucky (and Ohio this year), so we are in the countdown of preparing for that long trip. The kids are beyond excited about getting up north and seeing all of their extended family and hopefully snow!
We had the entire month of November off for doctor appts for the little guy, which has been such a welcomed relief lately. It was so nice to have such a long break. We've had 3 appts scheduled here right before the holidays, and we have 2 appts the week we get back home right before we head to Houston. Last week, Nate saw our surgeon and his team for an adjustment to his stimulator. It was the first time we have seen them since his last surgery, and it was so good to see everyone again. Nate had a lot of fun wearing his Halloween costume to the appt. The adjustment to his stimulator has helped him eat a bit more along with getting his tube feeds, so we hope this will help bump his weight up again.

All in all, Nate is doing extremely well. He is doing better right now than he has in a very long time, and it is so wonderful to see him like this. He just feels great. His energy levels are good more often than not now, and he just seems so happy right now. I pray it lasts for a really long time and that he isn't hit hard this winter with illness. The next few months always have us on edge when it comes to him getting sick.
The last week of school offers a lot of fun activities for the girls, and they can't wait for all the fun festivities to get here. It will all be over before we know it. I still can't believe it is already December and Christmas is around the corner!

Monday, December 5, 2011

Party like its 2011


We had a slumber party last Friday night for Abby's 8th birthday. Due to the facts that her birthday is 3 days after Christmas and that I'm just not a party planner, the poor kid has never had a friend party for her birthday. We had a blast trying to plan the activities for her slumber party, but I became a little panicked about what I had undertook the closer the day of the party came. What in the world was I thinking having 10 second graders (and Emma) over for a slumber party?

But it really was a blast! The girls all had so much fun spending that time together, and they were all so very well behaved and sweet to each other. I have quite a few pictures from the wild and crazy night that I need to edit, but here is a little sneak peek of the fun times they had:

Wednesday, November 30, 2011

It's beginning to look a lot like Christmas...



Tuesday, November 29, 2011

Thanksgiving Day


We drove a little south for Thanksgiving so we could spend the day with my grandparents and extended family. I have such fond memories of running around their yard barefoot with my cousins each Thanksgiving, sneaking off behind our Great Grandmother's house to pick oranges off the neighbor's orange tree, suck the honey out of the hibiscus flowers, climb the gorgeous Oak trees in our Great Grandmother's front yard, and race one another by running the length of the yard on top of rolling cable spools. Those were some fun times.

The older one below was my partner in crime growing up. We always got in trouble at some point, and our grandmother would make us sit in the livingroom and read the bible when we fought with one another. She taught me how to clean pig pens and help calm down a steer. We always talked about sneaking out at night on an adventure of running through some neighboring orange groves, but we never did it. She was my closest cousin in age and friendship. I sure do love this gal.
It was so good to be back here for Thanksgiving. It was good to hear my grandfather's heartfelt prayer and remember back on the past few years of family gatherings. It was a delight to watch our children play with my cousins' children and form those relationships and long-lasting friendships while sharing with them our own stories of when we were their age.
The little guy was a bit off that day, sleeping for a good portion of the visit and just being pretty low key. He did perk up the last 20 minutes or so of our visit, but he missed most all of the fun with all of the cousins. He just didn't last too long playing.

It was a wonderful day of family fellowship and reflecting on the blessings that have engulfed each of our lives not only this year, but for the past several years.

Tuesday, November 22, 2011

Thankfulness


He rustled a bit in the covers as I peeked around the crack in the door, confirming my suspicions that he was indeed waking from his nap. I crept up to his side of the bed, ducked my head under the top bunk, and was greeted with a sleepy smile and arms outstretched. As I snuggled in on the wall side of the bed, he wrapped his soft, skinny arms around my neck and pulled me close until our foreheads touched. I brushed the tip of my nose across his cheek. Even after almost-4 years, his skin is still so soft.
"You're my snugglebug. Snuggle, snuggle, snuggle." he uttered as he somehow inched his tiny body closer to mine. It's a ritual, these few minutes of cuddle time when he wakes. Oh, how I wish I could bottle up that feeling, those smells, the emotions of that special time together. That love.
Lately, my thoughts have often gone back to those first few months of his life. He was a little over 2 months old when our neurologist took account of his symptoms and instantly said he thought our son had SMA (a neuromuscular disease with usually a very short life span). Our world seemed to crumble for a while surrounding that appointment. It was our first realization that Nathan's serious symptoms weren't transient like we had hoped, that he was more than likely facing something that would dramatically affect his life, and that his life was indeed in jeopardy. Thankfully, we realized a few weeks later that Nate did not have SMA, but those terrifying few weeks were our induction into the fear of wondering what our son may face due to the genetic defects of his body.
To say that we were scared and heartbroken those first couple of weeks after that initial neurology appointment is a vast understatement. I prayed for God to heal Nathan's broken body. But in those same prayers, I would beg God that if it was his will for Nathan to die early and be completely healed in heaven, that he would take him quickly...soon. They were the hardest words I had ever uttered, and the prayer was two-fold...

At that point in the overwhelming information and emotional overload of the new medical world we had entered, I was horribly frightened that Nathan would suffer through the durations of his life with the frailties of his body. As parents, we automatically want to protect our children from the pain and sufferings in this world, and it was excruciating knowing that I could not protect my son from his genetic flaw. But what I didn't know then was that my views and expectations of the "suffering with a disease" I had imagined were skewed by fear. Yes, Nathan's life is different. His body does not work like it should, he lives with daily pain and discomfort, and he is not able to keep up with kids his age...but, he is not suffering. He is living...and living happily, joyfully, and full of zeal and laughter and enjoyment. Simply put, his life is amazing. That was something I could not foresee during those grueling first few weeks of his life when everything looked so grim.
But the main reason for the difficult prayer was sadly a purely selfish reason. The little guy who I had carried inside of me for 9 months, and who I had held in my arms for a few weeks, had stolen my heart like all of our children do. When we were told that his life could be shortened, I was literally afraid to love him anymore than I already did. I was afraid to love something so dear to me that could be taken away, and I knew that I could not protect my heart from loving him more each day. I had no idea that amidst the difficult, painful, and arduous circumstances that encompassed my son's life, that he would grow to show honor and glory to our God each day through his multiple trials and tribulations on this earth.
"Heavenly Father, please heal my son's body so that he may live a long life. But if that is not your will, please take him. He is your child. I freely give him back to you."  That was my heart-wrenching prayer during those excruciating first few weeks of Nate's life.

And in response, God spoke to my heart through his word with instructions to trust him: "O taste and see that the Lord is good: blessed is the man that trusteth in him." Psalm 34:8, to know that he was always in control: "the Lord is in his holy temple: let all the earth keep silence before him.” Habakkuk 2:20, and to give him honor and praise and gratitude, even through the hardest of trials: "O give thanks unto the Lord, for he is good: for his mercy endureth for ever." Psalm 107:1
This year, I am thankful that God hears our prayers but does not answer some of them. I am so very thankful that our omniscient God knows every intricate detail of our lives and how to lead us through the mountains and valleys. I am thankful that while he has not taken away Nate's disease, he has given us the tools and attitudes to live a joyful and fulfilling life amidst the trials we all have been given.

I am thankful for today...that I can kiss my husband when he gets home from work each day and hug my girls before they walk into school. I am thankful that we have been given the gift of not taking these precious years together for granted. And I am thankful for the little fingers that still wrap around my hand, for the little brown eyes framed in beautifully long eyelashes peering into my own eyes, for that coarse, brown hair that I love to run my fingers through, for that smell...however metabolically smelly it may be at the time, for the sword and gun fights, and for the belly laughs that I can't get enough of hearing. I am thankful that God knows the course our lives will take and how to prepare us along the way. I am thankful for the knowledge that God is on his throne and forever in control.

"O give thanks unto the Lord, for he is good: for his mercy endureth for ever." Psalm 107:1


Friday, November 18, 2011

November


The girls have been super busy this week with all kids of activities as we make the whirlwind round of activities to wrap up the end of the year. Thankfully, 2 of Nate's appts scheduled for this week were canceled and rescheduled, freeing up some much needed time to shuttle the girls around.
Both girls have been in an after school program one day a week at a local church with quite a few of their friends. They have had a blast in this program the past couple of months, as they work on crafts, snacks, and a little play/singing performance. Wednesday night was the big night of the performance, and both girls were giddy with excitement all week long leading up to this night. It was so much fun watching them sing and dance in front of the audience.
 
I know I say this a lot, but they are getting so big! That fact stops me in my tracks every once in a while as I see them tackle so many circumstances with maturity and less need for help.
Emma's Thanksgiving feast with her kindergarten class was yesterday. We had the same feast with this teacher 2 years ago when Abby was in her class, so it was fun to be able to participate with the adorable pilgrims and indians once again.
 
Emma has a really great class this year. Being able to volunteer for a few hours each week, it has been such a joy to get to know the little personalities of the kids in her class. And it has been an even greater pleasure to see her grow intellectually and develop unique friendships throughout the year. I often wonder what these little kindergartners will be doing 20 years from now. I can't wait to find out.

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