Friday, May 29, 2009

Just a picture


Because, dang it, when did he get old enough to look this big?

Thursday, May 28, 2009

Sleep...eh, who needs sleep?...study


Last night, Nathan and I partook on the adventure of testing out our city's great sleep lab. I was pretty impressed with the hotel-esque accommodations coupled with that unforgettable hospital smell. Really, if you just shut your smeller off, you would think that you were vacationing right along the beach.

The little tech guy came in and started setting everything up for the night. He pointed the camera out to me and then tested the room's microphone system, to which I instantly cursed myself for eating those pork-n-beans for lunch. What happens in the sleep lab stays in the sleep lab. Nathan's beans didn't sit with him too well either through the night, and he made that very clear through the orchestra coming from his lower half each time he rolled over. I made sure to make eye contact with the camera each time this happened and just point to the little dude...just so they would know, ya know?
Nathan did so well as the tech was hooking him all up. He didn't seem to mind all the leads from his chest, face and head...until the nasal cannula was placed, and the little dude freaked! Thankfully, he was so tired by this point that it only took a few minutes to settle him down to sleep.

He did his usual flipping and flopping and waking numerous times through out the night. The GREAT news is that his CO2 levels were fine through the night, so he didn't have to undergo the arterial blood gas (a really painful blood test) that his Pulmonologist had ordered for this morning. And his O2 sats seemed to be okay through the night, so as a preliminary reading (granted, the tech couldn't tell me much), it seems as if he won't need any oxygen at night right now. Praise God!!
I slept beside him all night long and tried my best to untangle him from his wired-ponytail each time he flipped around. I am anxious to hear about how many apneas he had during the study, as I could audibly hear (how's that for a double entendre?) him holding his breath, then gasping and waking up from the gasp. And he did snore from time to time. We should receive the full report in a couple of weeks.

I'm really glad that this test is over and we won't have to do another one for quite a while...hopefully. I smelled coffee sometime in the wee hours of the morning and seriously contemplated finding the source and pouring a cup. The wasn't much sleep to be had on my side of the bed as I remembered why I've always dreaded sleeping with floppy mcfloppy at night.

On a different note, Hailey is doing very well. My dad just texted me a couple of pictures of her watching cartoons, and she looks so much better than I had expected. She is precious, I tell ya. We are so very thankful for God's wonderful blessings through Hailey's surgery and recovery, and we pray for a continued speedy recovery with no setbacks.

Wednesday, May 27, 2009

Hailey


Hailey came through her heart surgery well today and from the last I heard, she was still in recovery. She will be in the ICU for the next 2-3 days. Thank you for your prayers and please continue to be prayerful for a speedy recovery for the sweet little darling.

Tuesday, May 26, 2009

Lil' Miss Hailey


Miss Hailey Marie Gowens (my precious little niece and Nathan's future partner in crime...you know how those cousins are) will be undergoing heart surgery tomorrow morning to repair her VSD. I ask that you please remember her in prayer tomorrow. Pray for the surgeon to have steady hands and for little Hailey's body to respond well to the difficult surgery. Also, keep Ashley (my sis and Hailey's mom) and John (future brother-in-law) and all who will help care for Hailey in your prayers as they embark on a lengthy hospital stay.Nathan is still having a hard time bouncing back from the busy weekend. He is floppy and fussy and very unsteady when he walks. His stomach also seems to be having a hard time keeping up and is causing him to have some pretty rough GI problems. For the most part, he is just really "off" and we can not figure out what is going on with him. Our pediatrician ordered labs this morning to make sure he didn't need to be admitted for some fluids, and his blood work came back okay. So we are doing our part to help hydrate him enough to flush his system and just keeping a close eye on him. He is still sleeping a lot but is definitely sleeping less than yesterday's 20 hours! Obviously, his body is just overly exhausted and he is having a hard time getting back to his baseline.

This morning was his 15 month well check. 15 months!! Wow, when did the kid grow up on me? He's a whopping 20lbs 11oz (~5%) and 31 inches long (~45%). Despite him going through some kind of funk right now, he looks good. He is now signing "more" and "thank you" and saying a few words from time to time. Stinker still isn't saying mama or dada, but he loves to say bye-bye and apple and ball and uh-oh, along with a couple of others that I know I have heard him say at least a few times. He's growing up, my little dude.My best friend here in town called the exact moment I was loading all the kids up to head to the hospital to get Nathan's labs done and insisted that I bring the girls over to her house so I wouldn't have to lug them around for everything. I found out that she reads this blog now (Hi Rachel!) which I find hilarious because she is usually the first I tell all these crazy kid-raising stories to before I even have the chance to blog about them.

Everyone down here in the deep south will tell you that if you don't have a pool, you need to become best friends with someone who does. Rachel is my "friend with a pool". We met at the story time at the library when our oldest kiddos were about 9 months old and have been fairly inseperable since those crazy days when we had one chillen and knew everything there was to know about being a parent. In a sense, we have grown up together over the past 5 years. And our kids have all grown up together also. Emma and Rachel's 3 year old son are seriously like brother and sister and fight like the best of siblings. Abby and Rachel's oldest girl (also 5) are the bestest of friends. And we are really excited about the new addition of a baby girl to that precious family in August.

I tell you all of that to publicly thank this amazing friend I have for all that she has done for our family over the past year and a half. She is the one who works behind the scenes to help our family out in so many ways. She has kept the girls for me during Nate's doctor appts way more than I can count, and she is always there for moral support and for being a sounding board to me. We have laughed together and cried together through the many struggles our families have encountered through the past few years. Essentially, she has been like a true sister to me when our family is so far away. And I am so incredibly thankful for the blessing her family has been to us. I love ya, Rachel! Thanks for all you do.

Again, please remember Hailey in your prayers tomorrow. I'll update tomorrow when I hear more.

Monday, May 25, 2009

More rainy day week pics


Here are some more pictures from our fun puddle adventure last week...
Nap hair...
The kid truly is spoiled by his sisters, and well, everyone else for that matter...
We took a break for a PB&J lunch...
And then walked down the sckreet to the big puddle in the middle of the road. And yes, it is some nasty water in that puddle, which is why I only let the kiddos take one sip from it when they get thirsty.

I have no idea what the Absters is doing here, but good nelly, that kiddo is amazingly strong!
Emma found a worm, whom she loved and petted and pulled and twirled until it wouldn't wiggle anymore and pooped out something that strongly resembled what worm guts should probably look like. She just so happens to be every creepy crawly's worst nightmare.
We had a good weekend in Macclenny for our church meeting, but we are pretty confident that Nathan was so overly exhausted yesterday that he became acidotic in return. His neuro said at the last visit that he believed that Nathan was acidotic more than we thought but his body had learned to compensate with the high lactic acid levels, etc (which is relatively common in mito kids). Obviously, his body was so exahusted yesterday that he couldn't compensate anymore and he started vomitting.

After resting for most of the afternoon yesterday and getting some fluids in him, he seemed to perk up quite a bit. He has only been awake for a couple of hours all day today (It's 4:30, and he is on his third long nap), so he is definitely trying to restore his energy levels. After seeing him crash so fast yesterday without much warning (we knew he was tired, but didn't realize that he was so much worst off than he looked), we realized that we are going to have to come up with a new plan on how far we push him during our church meetings. Poor little dude.

Thursday, May 21, 2009

Insert comment about needing an ark or floating away here


While we are talking about arks...here is "Bible Stories, part deuce":

Me: Emma, what was on Noah's ark? (clearly looking for an animal something-or-another answer here. Bonus points if you add in a "two by two" reference)
Emma: Ummmmmmm, pancakes? We are on Day 5 of nearly incessant rain...which is all good and schtuff because we needed it and schtuff, and I am really trying to look on the bright side of having an 80% chance of rain for all day tomorrow as well. Thankfully, it warmed up quite nicely today and we even had a good break in between downpours, so the kids and I decided to make it a puddle day...
I cut Nate's curls off last Saturday...and I cut about three inches off Emma's hair yesterday. Clearly, I have been a little scissor happy lately.
The flowers are LOVING this rain though...and I'm sure the mosquito larvae are as well.
Okay, I have a TON more pics from today's "cooped up in the house for too long" adventure...I'll post more tomorrow.

Tuesday, May 19, 2009

The noggin generation...and a brag on the hubsters


The girls and I were reading about the Tower of Babel this morning, and I was trying to explain to them the concept of the people speaking different languages all of a sudden and how frustrating that would have been...

Me: Think of it this way...If I just all of a sudden started speaking to you in Spanish and you didn't understand anything I was telling you, what would you do?
Abby: I would have to watch a LOT of Dora shows so I could understand you again.
I must brag on my dear hubby a little bit today. We received word yesterday that Jay received his tenure promotion. He went up for tenure a year earlier than usual, and since he had a pretty loaded packet, he passed through the University's screening system with ease. We are indeed very thankful for the job that Jay has...not only does he do a great job, but he loves it. He works hard at his job, but he also makes a special point to spend as much time with his family as he can, and as his wife, I am especially thankful for this desire in him. He's a wonderful man...and I love him dearly and am so thankful for him.

Monday, May 18, 2009

Life with a boy


Seeing Nate do "boy things" has been one of the most exciting and scary things to witness. He's fearless...especially around water. My good friend here in town who has a nice pool and the friends at the pool/birthday party last Saturday will attest to Nathan's love of water. We have to watch him closely around water because he will dive in without even thinking twice...scary kid. He also loves dirt and sticks and rocks and bugs and will be carrying at least one or more of the aforementioned in his hand (or mouth or ears) about 85% of the time you see him. He also loves to throw things...balls and sticks and dirt and rocks...anything, really. He's all boy, I tell ya. And I love having little sticks around the house mingled in with the princess shoes and naked baby dolls.


This poor little "all-boy" boy is a little under the weather today. His eyes started getting goopy as the day wore on yesterday (sorry, all you Macclenny church-goers). A quick trip to pediatrician this morning revealed what we were thinking: pink eye...and a round of antibiotic drops. He should be good to go by the start of our annual meeting at church this weekend, and we have given the girls strict instructions that they are not to lick his eyeballs for fear that they may indeed get the pink eye plague themselves.

Thursday, May 14, 2009

Wrinkles between my eyebrows (aka: Emma's gift to her mother)


The kids and I were grocery shopping the other day and Nate dropped his paci in the cart. As I was trying to retrieve the germ-ridden mouth appendage from the bottom of the cart, Emma piped up with...

"Mom, I wouldn't look in here if I were you." When I obviously asked her "Why?", she said, "Because I took my shoes off and you are not going to like that."And that's how Emma rolls...if no one sees what she is doing, it isn't wrong...right?

Nate had another neurology appointment today, and it went very well. I really do enjoy talking with our neurologist when the students are out of school (meaning, he doesn't have med students following him around during all the appts). It just makes for a lighter and more relaxed appt. Plus, he is a really interesting doc, and I love hearing him chit-chat about the pediatric medical world. I am thankful for the relationship we have had with this wonderful doctor for over a year now.Anyway, he said that Nathan looked better today than he has ever seen him...and he was right! Nathan is having an awesome week. The month of April was a rough one for him on so many levels, and looking back, I think that his breathing problems were the root of everything. Once we got a control on his asthma, he started sleeping through the night consistently for the first time ever. With that, his energy levels are so much better than they have been in a long time, and his strength is coming back, and because he isn't having to work so hard to breathe all the time, he has gained almost a pound in the past couple of weeks. It's seriously like having a new kiddo around here. And its a wonderful sight to see...even if we have to lock all the doors in the house from now on...

Tuesday, May 12, 2009

The disadvantages of living in the swamp


It's no secret that I absolutely positutely LOVE living in Florida. Truly, I do. The weather, the daily summer thunderstorms, the mild winters, the drama that encircles hurricane season (okay, I guess all of those would have be categorized when I said "the weather", but it really is that nice). And I do love living here...with a few exceptions that are usually due to the creepy crawly things that like this kind of weather as much as me and all the snow birds (only a term Floridians understand).

SNAKES...the #1 thing I would vote to eradicate in our state when I become president. Second would be mosquitos, but ask me again in another month and they may have inched their way to the #1 spot.
Jay found this little sucker in our front yard this morning, dad-gummit...the first snake of the season in our yard. This prompted what I call in my anti-snake brain as "snake season", where I will start to watch each and every step I make in our yard from now until our first freeze next January in hopes that I will never ever ever ever ever ever step on the many hundreds of thousands of snakes that call our yard their home. I have a reputation with these snakes...one almost fell on my head when Abby was a baby...I kid not about these things. It was in the eaves of our garage door and I happened to walk under the door as it was going up...that's when the snake dropped 2 feet in front of me. And then I almost stepped on one as I was walking to our friends' front door. And then one slithered between me and the kids last year as we were playing on the slip-n-slide. They are evil, these slithering creatures...pure evil.

Jay let this one loose in the front flower bed...the one that is mere inches away from our walkway. I pleaded for him to kill it, but I would have even obliged to him letting it go a mere 60 miles from the house. Instead, he let is loose in the mulch right beside where I walk each and every single day so it can plan it's demise against my ankles. Seriously, I was headed out to check the mail this morning and a lizard jumped from the mulch and made me almost mess my pants, I kid not about these things. Not fun times...not at all. See...he's out to get me. He senses my fear. Just looking at this gives me the heebeegeebees. (I took these with a VERY long lens...the 100mm for all you camera enthusiasts...no way was I getting close to that thing with very long fangs.)
The girls LOVE it when Jay catches a snake. Emma wants to keep them as pets until I remind her that the day she brings a snake inside is the day that bear-bear finds a new permanent home far, far away from our snake country. Insensitive, I think not. Here is Nate trying to imitate a snake......which makes me so happy that I can not contain it. Not that he is imitating a snake, but that he is finally sticking out his tongue!!! Funny how little things like this can make you so excited! I have been working with him for months on him sticking out his tongue, and he figured out how to do it a few days ago. This is the kid who repetitvely stuck out his tongue every 3 seconds as a newborn/infant that had a few doctors asking a LOT of questions. Obviously, newborns are not supposed to do that, and we still have no idea why he was doing it. Once he stopped, he never did it again. And that has been one of our exercises and games for the past few months...to try to get him to stick out his tongue. You can imagine my excitement when he finally did it a few days ago. Little did I know that once he figured out how to stick his tongue out, he would then find it interesting to LICK every darn thing in sight. Trees and plants and refrigerators and feet and his own arm and lotion and chairs and doors and his sisters...nothing is exempt to licking these days. I don't have a heart quite yet to tell him to stop licking everything and everybody because he laughs in excitement every time he licks something new...like he is experiencing something for the very first time. Yes, I know...the kid is spoiled! I know. But in a way, I can't help it. I am just so glad that he is experiencing life to the fullest right now. I love seeing him laughing and smiling. I love this kid.

Monday, May 11, 2009

They are truly a goofy bunch


Loving these days...having three kiddos is a LOT of work, but oh, so much fun most of the time. They keep us laughing, that's for sure. Oh, and for you kiddos of the 80's...Emma is reciting her favorite line from a movie I watched a lot as a kid. I'll give you a hint...it has to do with Dinosaurs (Little Foot and Petrie and Sara and Duckie and Spike). Any ideas? That movie and "An American Tail" are the girls' favorite movies right now, thankyouverymuch Netflix! I just LOVE the fact that they are enjoying the same movies I grew up watching.

Thursday, May 7, 2009

April showers bring May...


I planted flowers last Saturday...for those who actually know me and have a hard time believing that, I have the peeling sunburned back to prove it. We went to Lowes to buy a new dishwasher (seriously, I need hearing aids from the effects of the one we have currently), and I decided that it was time that I grew up a little and planted flowers...so I eenie-meenie-miney-mo-ed my way across the garden center to see which flowers would work best in the bare flower bed we had in the front yard. It was seriously a big ole' guess at how much I would need and where I would place everything, not mention the fact that Jay had to inform me that "annuals" meant that they died and "perinnials" meant that they came back next year. Score one for perinnials. Do they make flowers that self-water??? Cause I'm game for that.
So I planted flowers...in the hottest part of the day on Saturday. And I got thoroughly burnt and dehydrated. But I did get finished in time to watch the Derby. Woo-hoo for 50-1 odds. Oooh, I just love the Derby. Every year, it makes me miss Kentucky, which is oh, so pretty this time of year. But I digress...

I was watering the flowers tonight and caught myself actually having a conversation with them..."Oh, I bet you are thirsty. Mama is gonna get you some water. How's that? Do you feel better now? Daddy is gonna bring some fertilizer home someday and you'll really like that." That was about that time that I shook myself to reality and realized that I was not 65. (Apologies to all of you who are actually 65, but that really was a "retired" thing to do, don't you agree?)
And that exact moment was when I realized why women like to garden. Those flowers...they are our babies (although taking care of babies seems to be a lot easier indoors...away from the swarms of mosquitoes, at least). We feed and water and talk to our precious plants. When the kids all grow up and go on yonder, flowers (and pets) (and husbands who don't pick up their dirty socks) are the only things left we have to mother.

It was at this exact instant that I ran inside and gave all of my children reverse growth-hormone juice...you know, so they can stay my babies forever. But then I remembered the incessant fighting and jumping and general craziness that went on today and decided it was okay if they grew just a little. I'm just not ready to be a gardener yet. Not ready at all.

Wednesday, May 6, 2009

Communication break-down


Emma loves to talk about body parts that should not be talked about. Part of me thinks that she only does it to get a pretty big reaction from us...poor middle child syndrome. So when she showed me a stuffed puppy that she found under her bed the other day and informed me that she had named it "Booty", I bit my tongue and nodded and hoped that my nonchalantness would cause her "body part" talk to cease soon. She renames those stuffed animals every other day anyway, so this too shall pass, right?Fast-forward a few days to today, and she is still calling that dang puppy "Booty". I'd had had it and confronted her about it...

Me: Emma, You need to rename that puppy. It's not nice to talk about booties.
Emma: But whhhhhhyyyyyy?
Me: Because. We do NOT name things after body parts. Not even your booty.
Emma: Oh. (looking a bit perplexed) But her name is 'Booty'...like Sleeping Booty.
Me: Ohhhhhhh, you mean Beauty?
Emma: Yeah. Booty.(And yes, that would be a band-aid on her nose holes...and I have no explanation other than "It's Emma. What do you expect?")

Monday, May 4, 2009

I expect to get a call from Dawn tomorrow


Little dude and oral steroids do not mix! Well, behavior-wise, that is. He was horrible for the first 3 days on that mess...the bare circle of scalp that used to house some of Emma's hair will attest to that statement. Turns out that if Nathan is consuming roids and wants to sit on the bean bag that you call your own, it might be best to just let him have at it. Oh and emotional...good griefers, it was like having a pubescent girl trapped in a 14 month old's body. Not fun times, no sir-ee Bob. And even though we are very thankful that he took the last of the oral steroids tonight, we are even more thankful that he did actually take them. I haven't seen him breathe this easily in, gosh, I dunno when. His wheezing was amazingly absent after the second day of the meds, and his retractions and respiratory rate have improved dramatically over the past couple of days. He will probably always retract when he breathes, but they at least look a LOT less intense now. Poor little fella was really struggling more than we thought. Now he will be on a daily inhaled steroid to hopefully keep the inflammation at bay. When I have kids, I will never...well, dress my boy in fru-fru outfits, of course! I want my little boy to look like a little man. And he does...a lot of the time, but I have to really learn to stop saying the "I will never" thingamabob. It's purely a set-up for looking like an idiot.

So yes, we received this stinkin' adorable outfit as a hand-me-down, and amidst "manly"comments from his daddy, I just had to let him wear it. I mean, look how adorable my sweet little baby boy is in his little fru-fru outfit. God love him. He even wore his hand-me-down "clown shoes" (that's what Abby calls them) to complete the whole ensemble. And I now need to apologize to you, Dawn, for poking fun of these outifts you love so much. Cause yeah...they're pretty darn cute.
On a separate note, we received word that Hailey's (my niece) open-heart surgery is set to be performed on May 27th. Please keep the sweet darling in your prayers.

Saturday, May 2, 2009

The Lord provides


Having a child with mitochondrial disease has been compared with living on a roller coaster...there are amazing highs and horrible lows...and there is no real way of knowing which you will encounter with each week. This week, we have encountered both. It has been one of the tougher weeks in a while we have experienced, but it sure did end on a wonderful positive note.

Last week, Nathan qualified for therapy services through our state's Early Steps program...essentially, they are services that we do not have to pay for, and they will come to our house to render the therapy. A couple of weeks before that, I received an email from Nathan's long-time physical therapist stating that she was leaving our current therapy program to work for another practice. I panicked initially, as she has been such a blessing in our lives over the past year who we love dearly...until she told me that she wanted to keep Nathan on as a patient somehow. She has come to our house twice to see Nathan recently, and I have offered to pay her personally, but she declined. As a parent, I have been troubled in how to pay her for her services. She has a skill in therapy that WE need, thus I feel the need to pay her for her services, but she has insisted that she is only helping a friend in these times. And even though I was thankful for her giving spirit in these times, I was also overwhlemed with the need to pay her for coming to help Nathan.
On Friday, I received a text (gotta love today's technology) from Nathan's physical therapist. She had been contacted by our Early Steps supervisor asking if she would consider becoming a provider with them to be able to conduct therapy services through our state's program. After the middle of May, she will once again be Nathan's "official" therapist and will be paid through the state for her services with our son. I will no longer be burdened by her providing services for our son for free...as she will once again be paid for her services. She will be the one over-seeing Nathan's case (therapy-wise) once again...as it has been the past year.After a tough week, I just cried when I received this text from her. God is in control! And He provides in so many circumstances. So many times when we have felt that we were at a road block, He has provided a way so much better and easier than we could have ever imagined. God provides! And we are living proof of that fact.

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