Wednesday, March 31, 2010

Another joy of living in Florida


I had this long elaborate post floating around in my head to accompany this array of pictures from last week's kindergarten field trip to a local strawberry patch. But alas, the week is getting away from me and the night is creeping on and my thoughts shall be summed up in just a few pictures from the many taken on this very, very fun day with some of the greatest bunch of kindy kids ever...starting with the 3 I was seemingly responsible for throughout the day:

Tuesday, March 30, 2010

Nathan's "bugs"



So, the little black "bug leg-like" thingamajiggers on Nate's finger are...stitches. Yep, the kid who has had a really good string over the last couple of months had to go and throw a curve ball and remind us that he is indeed a boy. While trying to climb on a stool we have in the kitchen, the stool toppled over and landed on the kiddo's finger, smashing it so badly that it split wide open. Lots of screaming, lots of blood...it weren't a purdy sight.

After trying to steri-strip it together, we realized that we probably needed to head to the ER when it was still dripping in blood 2 hours later. ER on a Friday night is NOT what I wanted to do at all, but a little extra nudge from our pediatrician on the phone sealed the fact that we needed to get it seen about. Sure enough, Nate's little adventure earned him 2 stitches.

We have seen most of the staff on in the ER before, and the attending immediately asked for Nate's protocol letter to read up on the drugs he can't have and everything else, even though he was just in there for a laceration. We've seen this attending before in the past, and she is incredible...I made sure to thank her for her knowledge of mito.

They gave the little guy some ativan to make him sleepy for the procedure, but it unfortunately had a delayed reaction and didn't have much affect until a while after they stitched him up. Let me say that Mr. Nafey boy is hilarious on ativan! He kept looking around through half-opened eyes at the curtains and laughing over and over. He was cracking us all up at his "out of it" hilarity...and loud, boy that kid was laughing so loud. By 1:00 in the morning, he didn't care at all that he had smashed the mess out of his finger.

It was a nice in and out ER visit, and hopefully our last one for a LONG, long time.

Thursday, March 25, 2010

Awareness


A fellow mito mom from North Carolina worked long and hard to put together the following video in an effort to raise more awareness for mito. The more awareness that is brought to this disease, the more funding scientists will have for potential treatments and hopefully a cure. Thanks to Amber Greenawalt for all her work on making the video.

To help us find a cure for Nathan and the many others suffering from Mitochondrial Disease please support the United Mitochondrial Disease Foundation, www.umdf.org.

PS...you may recognize a few of the photos of an adorable little guy (wink, wink).


On a different note, but still in the realm of raising awareness for mito, I was contacted yesterday by a representative from Miracle Flights. They said that they were using Nathan's picture and story for their "Sample Patient Story" on their website to help direct parents requesting flights for their children. I am so honored they chose Nathan to help represent their organization, which has been an incredible help to us in so many ways! You can view the page by clicking "here".

Wednesday, March 24, 2010

Her name ain't Grace, that's fo sho


Have a kid who is clumsy just walking around on a good day? Slap some skates on that booger and watch hilarity ensue.
In all honesty, if the batteries were charged in my other camera, a full length video of Abby skating just might have been the next great you tube sensation. It was that funny. And the most hilarious part of all is that she seemed to think she was pretty good as she sped up and down the driveway with every limb on her lanky body just a flailing in all directions.
Knee pads...well, they were definitely a must for the kid who spent a good portion of her skating experience on the ground in positions that caused my body to ache just looking at them. Only, knee pads were something that had never crossed my mind to purchase. When I was a kid, we fell, wiped some dirt into the blood and sported our roughed up knees until they were healed enough so that we could pick the scabs until they bled all over again. Yeah, those were the days.But today...well, my kid needed knee pads. As a self-proclaimed mother of make-shift inventions, I figured that all I needed were a few rolled up washcloths and some packing tape. Voila! Redneck knee pads.
The kiddo had quite a few bruises and scrapes from today's adventure, and I sure as anything could have sworn that the tip of her tail bone would have been broken completely off and floating mindlessly around her lower half, but she seemed no worse for the wear. I give her credit though...it didn't matter how many times the kid fell, she always got right back up just a flailing as much as she did before. Graceful, she is not.

Wordless Wednesday: the epitome of adorableness


Tuesday, March 23, 2010

Special Needs Parenting


It took me a while to admit that we are one of "those" few...you know, special needs parents. I still have a hard time saying it. Its the stigma that comes with those words. I have often thought "I have no idea how parents of kids with special needs do it, nor do I want to find out." Yet, here we are...and it is somewhat normal to us. We are still living. We are still enjoying life. We feel somewhat normal...most of the time. Special needs parenting isn't all that different...

...most of the time.I came home exhausted today after spending most of the day at a cardiology appt (which was good, by the way) and a therapy appt for Nate. A good portion of the past couple of days has been spent getting a hotel and rental car for our upcoming trip to Houston and talking by phone with the neuroscience liason about the intricate details of the tests Nathan will have performed while we are there in a couple of weeks. Next week is full here with 2 therapy sessions and 2 specialty appointments before we head to Houston the following week...well yes, special needs parenting is a little different sometimes.Abby and I were playing a game a few days back when she looked up and asked "Is Nathan going to die soon?" The question startled me and made me want to wake up from the nightmare that was overshadowing my life at that moment. I picked my heart up from the floor and carefully proceeded with "No hun. What makes you ask that?" She told me that a friend had told her a couple of weeks prior that since Nathan had a disease, it meant that he would die soon. Abby had carried that on her heart for 2 solid weeks before asking me...a burden I wouldn't wish on anyone, especially a 6 year old. She simply adores her little brother, and it hurts me to know that she is affected so profoundly by circumstances that most other children don't have to endure or think about. I explained to her that while Nathan's disease was indeed serious at times, we are trying everything we can so that he can be healthy. "The prayers, the medicine, the oxygen, the doctor appointments...we are doing all of that so that Nathan may live a very long life. Just look at how great he is doing right now!" was my ultimate answer to her. Yes, special needs parenting is a little different sometimes.I have always had aspirations of homeschooling. I absolutely love seeing the little light bulb go off in the heads of my children when they learn something new and "get it". As Abby reached closer and closer to starting kindergarten, I realized that I had to throw in the white flag of defeat...I, the mom who thought she could conquer Mt. Rushmore and Mt. Laundry at the same time, could not "do it all". Taking Nathan back and forth to doctor appts and therapies was taxing on my physical and emotional strength, and after much prayer and deliberation, I realized that Abby needed to attend our local public elementary school. Thankfully, she has excelled in this environment more than I had ever realized could happen, and we are beyond happy with the arrangement.

Of course, pride still gets in the way sometimes...I took great pride in the fact that I kept Abby home with me and was able to teach her at home until she started kindergarten, and I planned to do that same with Emma. "A man's pride shall bring him low: but honour shall uphold the humble in spirit." Proverbs 29:23Due to an increase in Nathan's therapy and doctor appts recently, I have had to take Emma with me some. My best friend keeps her sometimes during these times, but she has 3 kids of her own, and I often feel bad for asking her to keep Emma so often (even though she will scorn me for mentioning this). Emma is a typical self-centered 4 year old, so an appointment directed just to Nathan usually ends up in Emma acting out in some way...which more often than not, ends in me being especially exasperated with her. The past few appts have been especially tough for some reason. At a therapy session last week, she couldn't understand why she couldn't interact with the therapist like Nathan does. When she overheard that Nathan would start therapy in the pool the next week, she broke down in tears while sobbing "Nathan gets to do everything, and I don't get to do anything."
I completely understood what she was saying. Therapy is fun...new toys, one on one attention, constant praise at normal, mundane daily accomplishments...who wouldn't love therapy for a toddler? And she is right...even though I have tried desperately to spend more snuggle time and one-on-one time with her lately, she doesn't have anything that is for her. She is stuck in the middle...being pulled from appts to therapies to picking up her sister from school to other functions. She is being left in the chaotic dust that is currently our life. Yes, special needs parenting is different sometimes.
After some parental discussions and setting aside of appropriate funds, we have decided to enroll Emma in preschool next year. She will be attending at a church within walking distance from our house...the school that my best friend's son is also attending so that she can easily pick Emma up if needed. This is something she will love...something that is all her own. Emma is beyond excited already at this opportunity. And while I can't help but think that I am pushing her aside for someone else to "take care of", I also have a huge weight lifted off my shoulders.

You see, even though our daily life seems so normal, and we generally live our lives laughing and dancing in the livingroom and sharing stories about our day around supper at the dining room table, I also admit that special needs parenting is different at times. It's hard...yet, it's more rewarding that most will ever know. It's just a...special way of life.

Monday, March 22, 2010

Just pictures


Because there simply aren't enough hours in the day right now...I give you pictures from a few weeks ago. Think warm thoughts.

Friday, March 19, 2010

Adventures in potty training


I would be doing an injustice to society as a whole if I didn't share too valuable lessons I have learned this week...

#1: In putting a boy down for a nap in a pull-up, it is imperative that you make sure that his "manhood" is not peeking out over the top of the pull-up to see what it can see in the world. If this is the case, you will hence and forever more have a pee stain on the mattress pad cover and a boy drenched with ammonia smell from top to bottom. Add in a little riboflavin, and you will have glow in the dark neon yellow sheets (the mito world shall know what I'm talking about with that one). Bottom line: "manhood" needs to be tucked away neatly.
#2: When taking a kid to the bathroom in the morning and discarding of the night's diaper, it is probably a good idea to put on some skivvies or the like on the kiddo before zipping the footy pajamas back up...especially if the muchkin is not doing exceptionally well at informing the caregiver before he proceeds to go in the #2 department. Having a kid come to you with a lump in the leg of the footy pajamas is not a good way to start the day...especially if he was been kneading the lump with his toes for a while.

Other than those, Nate is doing very well in with potty training. The first time he pooped, he jumped up with excitement because he thought he had peed. He started chanting his "I pee-peed in the pottay" speech when he looked down at his other-worldly remnants and said "OH NO MAMA! What is THAT?" He has been mortified at the sight of the prize in the potty each and every time he has pooped on it since then. Funny kid. I'm sure he'll get used to the sight before too long though and be a pro at explaining the intricate details of them once he hits about 55.

The little guy has been "off" all week. Mostly non-specific things like lower tone, skin coloring and mottling, elevated heart rate, more labored breathing, retching, pure exhaustion...all things that makes us realize that his body is under some kind of stress. His temp was 95-96 for a couple of days, so I kept him bundled up in covers to raise his body temp a bit...again, he does this periodically when he is under some stress. I took him into the ped on Tuesday, and while she agreed that something was going on, she couldn't figure it out then. He got more "off" as the days went on, and last night's fever and cough/runny nose clued me in that I needed to have him checked once again. Sure enough, he had an ear infection, and I was so relieved to hear the doc say those words. "Off" weeks are always so hard because you never know what is wrong, but to know that it is something that can be treated is such a huge relief! Hopefully the little guy will be back to himself in a couple of days.

Wednesday, March 17, 2010

Winner of world's laziest kid contest


Emma: Mom, I think I want to start wearing pull-ups again.
Me: What? Why?
Emma: Because I have to go to the bathroom every day, and I'm just getting tired of it.
Oh Lord, please help me with this kid.

Tuesday, March 16, 2010

My my, how things change


I was talking my dear sweet husband's ear off last night about some exciting events that are going to happen in the next few weeks when it hit me. In the middle of my 90 miles an hour speech, I stopped and thought out loud "3 years ago, if anyone would have told me that I would be getting excited about stuff like this, I would have called them crazy."

But in reality, our life has changed so drastically in the last 2 years that what we once would have imagined to be crazy is indeed truly exciting!

At last summer's mitochondrial symposium, I met a wonderful mom from Orlando who was interested in raising awareness and funds in our state for this disease. She and I quickly became friends, and she convinced me to become the UMDF ambassador for my city. The two of us, along with another new friend from Tampa, were encouraged to start a mito group for our state. A bit reluctantly, we did, and it seems to be taking off fairly well.

This Saturday, March 20th, we will be having a support group luncheon in Winter Park. We look forward to chatting with other families about this disease and how to raise more awareness and funds for the diagnosis, treatment, and cure to mito. Any family who is interested in attending this meeting can contact me (amberferrell@gmail.com) for more information.

Next on our agenda will be Grand Rounds in April. This is something that I have wanted to happen at our hospital since we were going through the diagnostic realm with Nathan. While there are a couple of our docs who understand mito quite well, there are still a large number who are not familiar with it or are only familiar with severe cases...or even worst, they mostly know the myths that are associated with mitochondrial diseases and think of those as truth. Secondly, I wanted Grand Rounds at our hospital because many families will not have the opportunity to travel out of state to hear a doctor specializing in this disease talk, so I wanted to bring these doctors to our state. In attending the symposium and in meeting with Dr. Koenig in Houston, we have gained invaluable information on how to care for Nathan...I wish this opportunity was accessible to everyone dealing with this disease.

So, our Central Florida Mito Group mentioned to UMDF (umdf.org) that we wanted a mito doc to conduct Grand Rounds at our hospitals, and they arranged that for us. Dr. Bruce Cohen from Cleveland Clinic will be conducting the Grand Rounds for physicians and for families. He will be having a physician meeting at a hospital in Tampa on April 26th, but I am not familiar with the details on that meeting. On April 27th, he will be at Shands in Gainesville. He will speak to physicians and other medical professionals in a separate meeting first and then conduct a meeting directed to individuals and families affected by mitochondrial disorders. Anyone can attend this meeting...therapists, educators, medical professionals, and anyone who is interested in learning more about mito.

Grand Rounds Family Meeting
Shands Hospital
Gainesville, Florida
April 27, 2010
1:00-3:30pm
Room Number: to be determined

Please contact me if you need additional information.

And lastly, we were approached last week about potentially doing a mito day at a Tampa Bay Rays baseball game in September. These plans are still in their infancy, but we are excited about this opportunity and hope the plans will continue into fruition. The game will be the afternoon of September 19th. Please contact me if you would be interested in attending.

So, LOTS of stuff going on in the mito world in Florida, and it is all very exciting!

Thursday, March 11, 2010

Last weekend


See the smiles here?...
and here?...
and here?...
Okay, so the little hooligans were past exhausted when I snapped these pics, but it truly was a good weekend...errrrr, Saturday. Soooooo, my dear husband's evening puking adventure tonight reminded me that I hadn't mentioned our wonderful/half-wonderful/"i-just-wanna-be-home weekend" with some dear dear friends.

The weekend I slept half way through. Yeah.

One of our dearest couple-friends (translated to mean: friends that got married long time ago and had kids and became a family, but have always been our friends) was ordained to be a Primitive Baptist minister this past Saturday. We were so excited to attend the ordination in the good ole' state of Middle Georgia. We saw wonderful close friends, friends we haven't seen in a while, and friends we have never met during the ordination service and was blessed by the incredible spirit in the service. Afterward, we spent our evening at the ordanatee's house while our childrenonatees played among the toyanatees and threw fits when we told them it was time to clean-up-anatees.

We then returned the our hotel...and that starts an entire new story of the stomach bug of 2010 in a hotel room that all 3 of the Ferrell women thoroughly fumigated with stinch and gastrointestinal bugs of unknown origin. It 'twas nasty...I know that fo' sho. And Sunday...well, I kind remember my dear husband running to Wallymart to buy some puke pails and crackers for the way home...and then I remember sleeping most of the day. And by "most of the the day", I mean a good 18 hours. The puking wasn't the tough stuff...the exhaustion was what kicked my bodunkadunk.

4 days later, All 3 of us Ferrell girls are doing purty good, but the father Ferrell has to go and start puking on us. That leaves the last little Ferrell left from this virus...and he is the most delicate Ferrell of all when it come to this stuff. Praying like crazy that the littlest Ferrell doesn't get the funk!

Wednesday, March 10, 2010

Wordless Wednesday: Success!


"I pee-pee on the potty! High five! I get a tweat!" is what I heard an extremely excited little boy say 7 times today. He also said that he wanted to wear his "Percy undies" tomorrow (a train from the Thomas the Tank series)...I'm not so sure yet. I'm thinking commando and pull-ups may be the way to go for a while. And for all you that have talked potty training talk with me in the past, yes, I said pull-ups. My all or nothing potty training rule has lost some steam in my old days. I'm just not ready to tackle this full on with another kiddo quite yet.

Tuesday, March 9, 2010

This and That and The Other


First off, I want to mention a couple of sites that have been a huge help to us lately...

Our Occupational Therapist is an incredible help in Nathan's life and in the life of our family as a whole. She has been telling me bits and pieces for the past few months about a bowl she was creating that literally is stuck to the table in order to help kids eat. For any of you that have ever used the suction cup bowls, you quickly realize that they can become unstuck by our crafty kids quite easily. Nathan has been a slower learner on spoon/fork feeding himself, so we have been working often on this skill over the past few months. One hiccup he has had is that he often has to work intently on keeping the bowl still just so he could get a good bite of food on his utensil. It has often been frustrating for him. So, our OT gave us one of her new bowls, and it has been such an incredible help! I HIGHLY recommend this bowl to every little toddler out there. http://www.todays-mommy-baby-toddler-guide.com/spill-resistant-bowl.htmlAnother company that has been an incredible help to us lately has been Miracle Flights. This is a nonprofit charitable flight organization that helps families fly their sick children to areas of the country to receive medical care. A dear friend told us about this organization a few months ago, so I decided to contact them regarding our upcoming trip to Houston. There is a good bit of paperwork to fill out and some information needed from home doctors and from the doctors the child is visiting, confirming the diagnosis and reassuring that the child is medically capable of flying on commercial airlines, but the leg work is well worth it. The workers at Miracle Flights were a joy to communicate with...just so kind and thoughtful. We recently received our flight information from this company, confirming that they were able to get a flight for Nathan and myself for this upcoming trip to Texas. In the midst of everything, I am so very thankful that there are organizations like Miracle Flights. www.miracleflights.org
On the other news, Nathan is doing really well...really really well. The past month has been a wonderful month for him in regards to his physical health, and it has been a wonderful month in regards to our emotional health. During the fall and winter, so many things were happening back to back and sometimes it felt like we were in a constant state of mini-crisis mode. Starting in February, Nathan was relatively well, and our appt schedule was clear for an entire month. Oh, that month "off" of most things medical was exactly what we needed. It was a breath of fresh air and gave us the ability to hit the ground running again. It felt like a vacation of sorts.March started his string of "spring cleaning" appts...the appts that he needs once a year to make sure that certain systems are all still A-okay. His ophthalmology appt was perfect. It also helps that his ophthalmologist is the mom of a kid in Abby's class, so we see her around school from time to time and catch up at different functions. She super sweet and a great doctor. Some more upcoming appts are cardiology, immunology and neurology...and then we have the week in Houston the first of April.The little guy had a GI appt this morning, and it also went really well. He has gained a bit of weight and height and has made us and his GI docs very happy. I'm telling ya, he's had an awesome month! Due to some weird labs and other GI issues, we are doing a little work up for pancreatic insufficiency and treating for a probable small bowel bacterial overgrowth. He had lots of labs run today...LOTS! Like "9 viles of blood" worth...literally. We needed labs for his upcoming immuno appt, to check on his anemia issues, and to check some vitamin levels. We were able to see our favorite phlebotomist ("favorite" and "phlebotomist" should not be mentioned together, but alas, she is really great) and Nafey dude didn't cry at all. Through all that blood, he just sat there and sweetly ate his Dora fruit snacks while running commentary on the identity of the fruit snack that was about to be consumed. He's getting so big.So, busy month ahead of us, but we are hopeful that Nathan will continue to do as well as he has been doing. It is so much fun to see him blossom into this fun little guy. This is truly a wonderful time in our lives.

Monday, March 8, 2010

Conversations you never thought you'd have, 212th edition


Me: Hey hun, did you know that there is a dried turd in the bathtub?
Hubsters: No, but I did notice that the bath was a weird color when I got the kids out last night. I just thought it was from the popsicles they were eating.

Why in the world my toddlers like to poop in the tub is beside me, but what I do know is that I seriously need some more bleach up in this hood.

Friday, March 5, 2010

The oldest


She is a joy to be around. She loves deeply and emotionally, and that shows in every aspect of her relationships with others. She hurts when others hurt and rejoices when those around her are happy.
She's in the 85% for height and 75% for weight for kids her age...our super tall, super muscular kiddo all the way. Aside from a battle with strep throat this week accompanied with egg-sized lymphnodes and the quintessential scarlet fever, she's healthy as a horse! Seriously healthy and growing like a weed.
She's doing outstanding in school! She earned a "Great Kindergarten Achievers" award a couple of weeks ago and was showcased on the morning announcements at school one day this week for the award. She beamed with pride and was just so cute up there standing next to their principal. She's simply a joy and sweet all around. A bit rambunctious at times, but full of compassion and love and beauty, inside and out.

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