Monday, March 30, 2009

You learn from your mistakes...sometimes


I was making dinner tonight while the girls had been quarantine to their bedroom until they cleaned up all the crapola on the floor, lest I blow the very last bolt that was keeping my head screwed on at that time. About 10 minutes into the "lock down", I heard Abby scream that kind of scream that makes every mother panic...because that kind of scream means that either A. Emma hung herself in the blind cord, B. Someone opened their window and was in the process of kidnapping them or C. Emma was currently applying Abby's favorite lip balm to her tongue. Little did I know that the kind of bloody scream that came out of Abby's head had a D. option: Emma stuck yet another random object up her teeny nostrils. Great. She obviously had not learned anything from the last encounter of nose-hole mischeif...but, this is the kid who would eat soap as a toddler, gag and cry, and then put the bar of soap back in her mouth. I worry about that kid sometimes.The passenger on today's trip through the nose-tunnel: a blue polly pocket shoe. And this one was stuck WAY up there. In other words, there was no amount of blowing that could have shot that sucker out. Enter in a good ole' set of tweezers. Now enter in a child who is utterly freaking out at the sight of a good ole' set of tweezers. After some serious sweet-talking and some master maneuvering, I was able to coax that teeny shoe out of her amazingly teeny nose holes. Success, once again! I'm labeling myself a pro at this now.
When all was said and done, Jay chuckled and said, "Well, at least all those years of playing the Operation game as a kid finally paid off."
I also washed my brand spankin' new cell phone in the washing machine today. It is now drying and we are now praying that it works in a few days. It's enough to deal with the stupid things the kids do day in and day out...but when I do something stupid on top of it all, it kind of throws me over the edge. Blasted cell phone!
After weeks of emailing back and forth between our neuro, we are finally getting everything settled for Nathan's mito medications. I ordered one of his new meds today, and it was $200 for a 2 month supply. Too bad that money tree in the backyard didn't survive the winter.

Here's hoping that this is not a precursor to the way the rest of the week will unfold.

Friday, March 27, 2009

The secret to good photographs


BRIBERY! Yep, add that to the list of things I said I would never do with my children. Add onto that list the whole "never give the baby a bottle in the crib" concept that I threw out the window a few weeks ago when I realized that if you just toss the milk to the kid and go back to bed, he will more than likely go back to sleep afterwards as well. Survival, people. And sanity. That's what we're trying to maintain around here. Now, when we get the dental bill in a couple of years for bottle rot, you can then remind me why it isn't the best idea to let the baby's attachment item be a nice bottle of milky goodness.
Where was I? Oh yeah...bribery. You wanna know why my children jump at the chance to go on photographing adventures with me? I pay well. The going rate for 20 minutes of their time (don't worry, it's well within the child labor laws) is one big handful of jellybeans/m&m's/smarties/take your pick. Is that wrong? Well, don't answer that. Now, when we get a dental bill in a couple of years for candy rot, you can then remind me why this probably wasn't the best idea.

You know what a handful of jellybeans got me today? This...And this...
And this...this will make me remember how difficult it was to keep her from smiling that fakey smile all 5 years olds do. I got this look out of her by saying "ummm, think about Brother David"...because the kid has the biggest crush ever on our pastor and talks about him at various times throughout the week, to which I have to remind her that he is married, has a kid, and is old enough to be her grandfather (sorry, Bro. D). To which she always replies, "I know. But I just love him."
This one almost lost her payment for the session due to pure orneriness...
This one is the easiest to photograph...that is, if you don't make him stay still for more than 2 seconds...
This picture will always remind me of the adorable little laugh she does everytime she makes this face. I can totally hear it every time I see this...
And this...oh, my heart. It's his first tie, and I am in love with making him look like a little old man.

Thursday, March 26, 2009

More prayer requests


The kids and I have had a good week this week as the only thing we had going on all week was Nate's cardiology appt and our weekly scheduled trip to Target. Thus, we have spent a good portion of the time chillaxing in the front yard in our favorite time of year down here...in other words, before the snakes and mosquitos get too bad. I have also found that when you keep the kiddos locked up at home all day, they have a harder time embarrassing you. Really, you should try it. It truly works! I do want to ask that you remember a couple of kiddos in prayer that are near and dear to my heart: Little James Mizell received a presumed diagnosis of Cerebral Palsy last week, and he is undergoing some testing coming up very soon. Please keep him and his precious family in your prayers.

Also, I talked to my sister today, and Hailey is going to be undergoing surgery soon to have a g-tube placed in her belly. She also has a cardiology appt next week where they will learn more about when they expect her heart surgery to take place. Please keep this precious little thang in your prayers. I miss her terribly and hate that I can't get my hands on her right now.

Wednesday, March 25, 2009

Perhaps a move to the artic, have you?


The girls and I spent a good part of the morning talking about how animals living in cold temperatures (ie: not Florida) have bodies that can live fairly comfortably in freezing temps. We laughed a lot; they asked mucho questions, and I gave myself a little mental high-five afterwards at the awesome quality of time I banked up with the chitlens.

Fast-forward to our weekly adventure to Target where I seem to always spend entirely more money than I ever intended. The check-out gal was in the process of handing me the way too long receipt when I felt a little hand grab a big hunk of my back fat and proclaim to all humanity, "Look mom! You have blubber too!"

And yes, my friends, I did indeed run tonight. This blubber's not going to go anywhere on its own, ya know...especially if I continue to feed it Easter candy. Mmmmm, jelly beans.

Tuesday, March 24, 2009

Echo Schmecho


The little dude had a cardiology appt this afternoon, and it went very well. He had another EKG done and then an echo, where he got to chomp down on the last sucker from Valentines Day. I really do need to invest in some more suckers...they are great for keeping him still and content during random tests. Granted, we both end up one nasty sticky mess, but it is totally worth his contentment...plus, it gives him something to look forward to when he is having to endure so much.
After these tests, the cardiologist sat down and said, "The great news is that Nathan's ASD* has closed up." to which I replied, "Uhhhhh, say whuuuuuuut?"
*ASD: Atrial Septal Defect...congenital heart defect resulting in a hole in the wall (septum) that separates the left and right atrium.
Yep, turns out that the echo Nate had in the hospital last year showed that he had a hole in his heart...yet, we never knew about it. This is one of the examples of how frustrating the lack of communication can be at times within the medical community. When he was hospitalized, he had the echo done on a Friday late afternoon, and a cardiologist was supposed to read it that next Monday. We never actually saw a cardiologist and were told that since we had not heard anything from the report, it had to be normal because they would have contacted us if it was abnormal. Yet, none of the other docs ever looked at the report, and our pediatrician was never sent a copy of the reading.
Fast-forward to today when we received the year-old news...man, was I quite surprised! Although, it did make sense why Nate's previous EKGs said "consider left atrial defect". Hmmmm, ya think? ASDs are fairly common in genetic diseases, so we suspect that Nate's mito caused the delayed closure of this hole. And we are very thankful that it has closed on its own with no intervention.
I really liked the cardiologist we saw today. The really great news was that there was no evidence of cardiomyopathy, and we don't have to go back for an entire year. The cardiologist also confirmed that Nathan had something called a "Still's murmur"...merely, a functioning or innocent murmur that he will more than likely have for most or all of his life. Other than that, everything looks great, and his heart is definitely not the cause of his periodic bouts with tachypnea these days.
We had a lot of fun during Papa's visit this weekend...the kids loved the extra attention, and we seriously threatened to zip Emma up in one of his suitcases and ship her back up north. But now I'm kinda glad I didn't fulfill that fantasy because she has been so sweet and cuddly and obedient so far this week. Makes me love being a mom again!

Friday, March 20, 2009

Ahhhh, finally.


Today. Today was a good day. In a very leeee-ong string of pretty much bad days, today was indeed a very good day. The kids were well behaved...everything went almost according to plan. In essence, it felt like the very first sunny 70 degree day after a very long snowy winter. Although, it's sunny and over 70 everyday here, so the weather analogy might not swing too well with the southerners...though all you snow birds understand what I'm trying to say. Or do you? Sometimes I don't even know what I am trying to say.
(His "preacher" imitation)

After a rough month behaviour-wise with the chitlens, they were almost little angels all day today. Nateman had to have some labs run at the hospital today, and since Jay is gone to a meeting, the girls had to tag along. Little dude did outstanding during the blood draw...he grunted at the phlebotomist a couple of times, but he really just enjoyed slobbering all over the last sucker from the Halloween candy stash while they easily filled 7 vials of blood. We then had to hang out a bit longer so Nafey boy could fill a mini-plastic bag attached to his "wee-wee" (or whatever your special name is for it).

We sat and watched a woman play the piano in the lobby for a while, and Emma decided to march right on up and start dancing in front of everyone...that was when Abby rolled her eyes and proclaimed "Ugh! She is embarrassing me!" Dude! Seriously. When did you become 15? But, Abs was kind of right. I mean, Emma's form of dance is a half-ballet/half-provocative "what have you been watching in the middle of the night" type dance. I worry about that kid.
The kids waited patiently for the 3 hours we were at the hospital...although, I did let them run around outside and climb trees for a good while, to which they instantly took on the appearance of the VonTrap kids and broke out in their very own rendition of "Doe, a deer..." Seriously, if you could only live in my brain for a day...it's constantly mis-firing and coming up with all these scenarios. What is the deal?

Nathan was looking better today than he has in a very long time. He was happy and playful and very smart. He has been extremely spacey and unsteady all week, and he has been more tachypneic than usual, which is actually a bit freaky when it happens. But today, he seemed to feel so good...I can not tell you how good it is to see him on his "great" days. I don't worry at all about him on these days.
So all in all...a stellar day. Jay should be home tomorrow...and Papa (Jay's dad, who is with him at this meeting) is coming with him. The kids have been making crafts all day to give to Papa and to their daddy...since tomorrow is his birthday and all (shhhhhhhhhhh! He HATES to be sung to at lunch after church). Happy Birthday, sweetheart. You are truly the most supportive and loving man ever!!

Thursday, March 19, 2009

An update from a prayer request


I asked for prayer for a friend of mine from the great state of Missouri back in January...their son was undergoing a muscle biopsy at that time. They received the results from the biopsy today, and their son (who just happens to be Nathan's mini-medical-clone) has been diagnosed with Mitochondrial Disease, Complex III. That part did not come as much of a surprise to this family, as they have been expecting this for the past several months...but as we know first-handedly, it is never easy to hear.

But this family also received some additional perplexing information in that their son seems to have a glycogen storage problem (another metabolic disorder) on top of everything...the question is whether this is a disease in conjunction with mito or something completely separate. I am sure this family would appreciate your continued prayers as they try to continue to figure out the answers to these questions.

Liz (the good mama of this family) and I have spent hours emaling back and forth daily and talking on the phone to eachother a few times, and I truly look forward to meeting her this summer at the Mitochondrial Disease Symposium in Washington DC. In fact, we are going to be roomies. She has been such a blessing to me over the past few months as we have tried to solve the mystery of our boys, and I look forward to actually meeting this dear friend of mine.

Wednesday, March 18, 2009

No one ever mentioned the terrible threes


Abby: I think I am old enough to start calling you "Mom" now.
Me: (Pokes bottom lip out)
Abby: Okay, okay. I know you don't like me growing up on you and everything. (Sigh) I'll call you "Mommy" for a little while longer.
The kids all like to take turns on who is going to be the "envelope-pusher" (that's what we call it, but after writing it, I have no earthly idea what it means) for the week, and Emma seemed to get the shortest straw this time. Dude, she's been a handful this week. Everything she does seems to be in that "grey area" of discipline. She's not behaving too well, but she hasn't really done anything that makes you bring out the "big guns". No, I'm not going to shoot her. I might just shoot at her...watch her dance a little. Ha Haaaaaa, totally kidding, Ha Haaaaaaa, I think. ;)
I'm not too skilled on knowing how to reprimand the kid for basically annoying the crap out of everyone around. Because that about sums up how she is this week...just annoying. There isn't one certain thing she is doing, but she makes everyone around her say, "Emmmmmaaaaaaa" in the rolling eyes/whining sort of way all day long. However, she was indeed the perpetrator who cut the camera cord, and she calmly admitted in when I asked her the next morning...in a sort of "yeah, I cut your cord. Can you believe how strong I am and how big my muscles are for cutting through wires!" sort of way.While Nathan was getting measured for his SMOs (orthotics) yesterday, an older woman walked in and the girls didn't pay much attention to her...that is, until she started talking in a very deep raspy "I've been smoking since I was 3" kind of voice. That was when Emma, who is utterly incapable of having an indoor voice, asked the million dollar question to the entire building: "Is that a woman or a man?"

God love the little mess...she's the most hilarious and cute thing around most of the time. But then there are times like this week when all I can say is, "You better be glad I love ya, ya little turd nugget."(Pictures courtesy of Sis. Danette, who just knew that I would LOVE seeing pics from their fun adventure on Monday. Thanks again!!)

Monday, March 16, 2009

Someone's gonna get a good ole' talkin' to in the morning


Nathan's gastric emptying scan was this morning, and the little guy was such a trooper. He ate an egg with a tracer in it, and then he was strapped to a table for 90 minutes while a scan took pictures every 10 seconds to see how his stomach was emptying. He fussed for a few minutes and then fell asleep (score one for him not taking a nap earlier). While he slept, I watched a sappy chic flick and realized that that probably wasn't the best idea when the technician came in to check on things and I had to keep dabbing at my eyes and making comments on how bad the allergies were this time of year. Who makes a movie that makes you cry in the first 20 minutes??? I mean really!
At the hour mark, the technician came in to make sure that Nathan was usually on some form of a prokinetic med to aid in gastric emptying. At that point, hardly any of the egg had left his stomach. Poor little guy...no wonder it seems that his belly hurts so much. Nathan woke up in time to watch a Baby Einstein, and then the test was over. Honestly, it was the easiest test he has had so far because he slept through a majority of it.The tech said that they were going to write up the report and give it to our GI doc today, and we should get some emptying totals in a couple of days. He did say that he could definitely tell me that Nathan's emptying was very slow...we'll know more results in a couple of days, though there isn't much more we can do for it than we are already doing with the meds. Now we at least have a baseline for how his gastric emptying is now, in case anything were to change in the future.
The girls spent the day with Sister Danette from church...they mosied on over to her family's farm where the girls had a blast playing with a calf, chickens, cats, and a dog. They've been talking about how much fun they had, and I am absolutely positive that they will sleep well tonight! I think Emma would move to a farm in a heartbeat if we let her...that kid loves her some farm animals. Thanks so much, Sis. Danette!! They clearly had an awesome time.
Onto some exciting news...we celebrated such a fun milestone with Nathan on Saturday night. We have been working with him for months trying to get him to clap, but he would just look at us like we were nutso. Out of the blue the other night, he looked right at me and started clapping. Oh, it warmed my heart so much to see him do that adorable skill!! Next on the "skills" list to work on: pointing and waving. And I was planning on including an adorable little video of Nathan clapping here, but I was just recently made aware of the fact that we have a little scissor happy bandit in this hood who seemed to have cut my camera cable, and I have a hundred-dollar bet that her name starts with an E and ends with a MMA. And I (and she alike) am very glad that she is asleep right now, lest I doing something like strangle her or make her sleep upside down pinned from the ceiling fan by her toenails. What? Anyone have a better punishment? Instead, you'll get pics that have absolutely nothing to do with what was mentioned in this post...but are still pretty darn cute.

Friday, March 13, 2009

Friends, Appt, and a little Photography news


Some of my favorite people in the world came over yesterday at lunch and spent the day and night with us. Dawn is one of my very bestest friends, and we try to get together once or twice a year, so we were very excited about this short visit. Oh, and it was so much fun! We laughed until our stomach muscles hurt and talked until our cheeks hurt...and our husband's ears hurt. There's nothing like a great visit with friends.We met with the mitochondrial researcher here yesterday morning and had a wonderful visit. The short story is that Nathan will not be in the current clinical trial here, which is actually good because our calendar has filled up quite a lot in the past couple of weeks, and I wasn't sure how we were going to fit in the overnight stays in-patient for this study. But, we really fulfilled our main purpose in trying to get Nathan into this trial...to get acquainted with the only people around here that know mito.

It was very good to talk to the researcher. There are some exciting things that could be happening down here in the next few years for mitochondrial patients, and it was great to talk to him about his plans and thoughts. Nathan was his usual charming self and walked right up to the doc and sat in his lap for a while.

The doctor was very interested in Nate's daily fevers...this has been an interesting symptom for most of the docs, but no one has been able to explain a reason for it. This doctor was very intrigued and said that the first paper published on mito 50 years ago featured a patient who had these daily high temperatures. In essence, it seems that it could be the body's inability to change carbs over to ATP (energy) effectively, so it creates heat in return. That makes perfect sense to me because his temperature always goes back to normal (98 degrees) when he sleeps or naps, and it starts creeping up the moment he starts moving around and playing.
I love the mito doc's nurse, and she and I have had some great conversations lately. She asked me yesterday if I would consider helping start a mito support group here, and I said "absolutely". We really need one here! She is going through umdf.org to get the info on starting up a group, so we should have something going soon.

I believe that God opened up a door for us to meet with this researcher. He is a very busy man who has many responsibilities along with his research, and he took time out of his day to just meet and talk with us...and for that, we are very thankful. I had a strong feeling before yesterday that Nathan wasn't going to be in the study, so that wasn't a surprise at all. I told Jay yesterday that I think it will be a while before we see what God had in store with this meeting, but I strongly believe that we will know in the future why we had the opportunity to sit and talk with this doctor.

All in all, it was a good day...and a great visit with our friends!Switching gears just a tenth of a degree, we have received all of the new specialist appts this week, and I wanted to share what our next couple of months look like:

March 16: Gastric Emptying Scan
March 24: Cardiology
March 31: Immunology
April 1: Ophthalmology
April 3: Early Steps Eval. (Occupational Therapy)
April 8: Hepatology
April 15: Kindergarten Round-up for Abby
April 16-18: Daytona for one of Jay's meetings (woohoo!!!!)
April 21: PT
April 28: Audiology, Hearing Eval.
May 14: Neurology

I share this with you as a precursor to say something that I knew I was going to have to eventually admit...I am taking a break from photo shoots for an indefinite time. I have gradually toned down how many families I photograph each month, and I am now realizing that even the small amount I was doing was overwhelming at times. As much as I absolutely love photography and photographing others (I really really do love and enjoy this), I need to focus all of my time and energy towards my family and the daily activities we face. The many hours of editing photo shoots in the evenings will be replaced with regrouping from the day's events and going to bed at a reasonable time.

If I have already told you that I would photograph your family and we have not been able to set a date, please know that I am still planning on this. Don't hesitate asking me about a date to do this.

As heartbroken as I am to stop photographing others at this time, I am also extremely relieved to be able to focus that time and attention towards what is ahead for our family. I trust you all understand. And I do hope to be photographing once again in the future (in fact, I am going to keep my website up and running), but this time will have to be once our lives slow down considerably. (Humor me and don't let me know if that never happens.) Thanks, guys!!

Wednesday, March 11, 2009

From the mouths of...what did you just say?


Abby asked if she could do something the other day, and I told her no. Really, I can't even remember what the convo was about...it was just an everyday casual experience, until...

She started walking away and I distinctly heard her mumble "dang it!" under her breath.

"What did you say?"
"Nuthin"
"No, what did you just say?"
"Ummmmmm...wellllllllllll..."
"I know fo' shizzle that you did not just say 'dang it' sistah! Well, crap! Where in the heck did you hear that funky trash talk? I know that you ain't heard that kinda garbage in this flippin' house. Now go on and get that bar of soap so I can wash your turd mouth out, dag-nabbit."
Okay, okay, I know that "dang it" isn't too terribly bad, but it sure did sound like the mother board of profanities coming from a 5 year old's mouth. And yes, I've been known to say it a few times, but I thought I was really careful around the kiddos. Although, little miss has stealth hearing these days and can repeat whole conversations back to me in Latin. Dude, she's that smart...and that nosey. And she's totally testing out some independence these days...evident through her crossing the road without asking last night and almost being squashed like a pancake....to which she was totally reminded that she is not allowed to assert her independence without asking us first, dang it!

Tuesday, March 10, 2009

Things I learned this weekend


~Thanks to a new fascination from the littlest Ferrell with dropping things in the garbage, I know where to look for the lost trinkets, remotes, brushes and whatnots that drive me absolutely bonkers walking around the house trying to find. Oh, and if his left shoe smells like coffee grounds and raw eggs, you'll know why.~Little Dude responds amazingly well to albuterol treatments. Not only does it help his breathing, but it increases his energy level quite a bit, and he seems to feel so good after a breathing treatment.~Having a quiet house for a couple of days (Jay took the girls fishing in Macclenny last weekend) does WONDERS for your sanity. Seriously...WONDERS!! I feel like a new mama with more patience and understanding for my children's childish antics.~I may be one of the few people around that absolutely love daylight savings time. Or maybe the warm sunny days have gotten to my head.

~While running the other evening, I realized that I have quite a bit more jiggle in my giddy-up than there was when I stopped running in the fall. I blame my sudden love of anything chocolate. Seriously, where have you been my entire life, Lindor Truffles? (Pardon my while I take a moment to wipe the drool off the keys.)

It truly was a good relaxing weekend, and Nathan is feeling so much better. His breathing is great, his cough sounds much better, and his energy level is back to what it usually is. Now, let's see if we can keep the little dude well for an extended period of time.

From what I've heard, the girls LOVED the fishing trip, and Jay enjoyed helping catch fish on Emma's pink Dora fishing pole. Emma enjoyed touching every fish she caught, and I am trying to not think about all the picture opportunities I missed by not being there. Seriously, I would have loved to have gotten a pic of Abby sitting barefoot on the bank watching her cork bob up and down. Maybe in black and white. Yeah. I can totally see it.

Nafey boy had PT again this morning. I went in hoping that we could get away with him not having to have orthotics...I mean, his walking is so much better than it was 6 weeks ago. Sure, his ankles do still give out from time to time, and he does fall all of the time, but I thought I was just making too much out of all of it in my mind. But after today we realized that yes, he does indeed fall too often, especially for how long he has been walking. And his therapist is really worried about his wrists since he catches himself on those every time he falls. She is getting a prescription for him to be fitted for some orthotics for his feet...I believe he is getting SMOs, if I heard right. He will be fitted, and we should receive them in a few weeks. Hopefully these will help him as he is walking around and playing a lot.

Other than that, we are trying to get our early steps program to pay for him to have OT done at our therapy place here. There are a few things that he needs a little help on with fine motors, and we are realizing that his vestibular system seems to be a bit off...which would be the reason why he has always hated swinging. Other than all of that, it was great to see our therapy gals today. They have been one of the biggest blessings to us over the past year, and we are so thankful for their help and care for Nathan.

Friday, March 6, 2009

The possible answer to THIS week's sleepless nights


Nathan woke up at midnight last night crying, and I cringed when I walked into his room and heard the distinct "barking" cry that made me realize that a trip to the pediatrician the next morning was in order. That "bark" took me back to my childhood when my parents would sit in a steamy bathroom with my little brother until he could breathe easier. I picked up my little fella and instantly tried to soothe him so that he wouldn't get more upset and cause his breathing to be more labored. That crazy breathing won him a night between mom and dad...a very sleepless night where I laid awake quite a bit and listened to many of his raspy breaths.
Jay took him to the doctor this morning (I had an eye appt.), and sure enough, the poor kiddo has croup and an ear infection. Once again, I am amazed at how fast he went downhill. He was a little "off" yesterday and a bit cranky but was still walking around like he owned the place and generally okay, and he is one sick kiddo today who is constantly moaning and crying out. He came home from the ped with an antibiotic, a steroid, and his very own cute little panda bear nebulizer.Abby and I went on a date to the eye doc, where I was instructed that no, the world did not gradually become blurry over the past 6 months, and yes, you do need to get your eyes checked more often. I was also made aware that my mother gave me her bad-eye genes, and I now am the proud owner of the label of astigmatism. Thanks mom. I received a prescription increase for both eyes, and Abby had the fun act of picking my new frames out for me...so if I look silly, throw the bad tomatoes at her. She decided to go with the dark frames again. And even though I totally know that she will make fun of this dark-frame trend when she gets older and looks at pictures from these days, I secretly love that darker frames take away from the fact that my eyes are entirely too squinty and not at all even close to being parallel with eachother. Hopefully I will be able to see once again in about a week with the new spects.
Okay, here's hoping that the meds make the little guy feel better really soon, and that his breathing doesn't get any worst. Thankfully, he is breathing quite a bit easier after his first breathing treatment...thank God for nebulizers!

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