Thursday, August 28, 2008

A full day

One of the conversations I had with our pediatrician on Tuesday was how the Lord has prepared us for all of the difficult steps we have endured during Nathan's life. Each step has been heartbreaking and scary, but looking back, it had prepared us for the next step we faced.

Going through the pregnancy with the possibility of Nathan having Down syndrome prepared us for the realization that something was indeed wrong with our son..."wrong" doesn't quite seem to be the right word to use there, but I can't think of any other way to describe what I am trying to say (it has been a long day!). Going through Nate's hospitalization prepared us in knowing how the medical field works, made us less star-struck by medical professionals, and introduced us to a whole slew of new terms we needed to know. And going through the time when we thought Nathan had SMA made us enjoy TODAY with our children because we don't know how long God has planned for any of us to remain on this earth. Going through that extremely difficult time also prepared us for the future "scary sounding" tests Nathan would have...tests that would have stressed us out horribly if we hadn't already been brought down so low with the SMA diagnosis.

Today was a long day...the longest we have had so far in regards to doctor appointments. We left the house a little after 10:00 and dropped the girls off at a friends' house. We didn't get back home until 5:00 this evening. So, a LONG day. Nathan did great. He is the sweetest, happiest little thing, and regardless of how tired he is, he still makes a point to flirt with everyone who looks in his direction.

He doesn't have a diagnosis yet due to the new symptoms he has had in the past 2 months: unexplained fevers, tachycardia, more abnormal lab results. Because of these symptoms, he had to have some more of those "scary sounding" tests done today...more on that later.

Essentially, the neurologist has narrowed the cause of Nathan's problems to three things. He thinks that Nate either has 1. problems in his liver, 2. a bone marrow/blood disorder, or 3. dysfunction in the respiratory chain in his mitochondria (mitochondrial disease). Really, the symptoms and some blood work were pointing to mito (mitochondrial disease), and they still are for the most part, but we have to rule out the other issues first.

Today, Nathan had an ultrasound of his liver and some blood tests looking for cancer and tumors. We go back to the neurologist in 2 weeks to discuss these results and future tests/treatment. Due to his recent troubling lab work and fevers, the neurologist had to look into the possibility of Nathan having Hepatoblastoma. From how the neurologist presented this, we just needed to rule it out...but if he does indeed have this, we would need to start treatment immediately.

But due to Nathan's elevated pyruvate and periodic elevated lactic acid levels along with many other symptoms, most of the signs are pointing to mito. It looks like the next step with that is for him to have a muscle biopsy to check for dysfunction in his mitochondria and other muscle disease indicators. At the next visit, we will more than likely decide whether to go ahead with the muscle biopsy or wait to see what the hematologist/onc. suggests about his bone marrow.

A lot of information to absorb, huh? I am so thankful that Jay is able to take off work and come to these neuro appts with me...there is just so much info thrown at you in 30 minutes. Everytime we get back in the van, I say "Okay, tell me what you got from that appt" and he tells me everything he remembered from what was said.

With each visit, we have more and more respect and admiration for our neurologist and his nurse practitioner. They are wonderful people who are clearly some of the busiest people I have seen in a long time, yet they will still sit down and talk about daily life along with medical mumbo. It makes you feel more connected with them.

So, a little closer to a diagnosis. Not much, but at least a little bit. The neuro was extremely pleased with what all Nathan is able to do right now. He said that his muscle tone is a lot worst than his muscle weakness, and that is the reason he isn't behind on gross motor skills. That's a good thing! Well, not a good thing that he is hypotonic, but a good thing that his muscle weakness isn't too terrible.

Thank you for your emails and prayers. The Lord has blessed us exponentially through this journey, and I believe your prayers are being heard. Thank you.

Tuesday, August 26, 2008

The middleun

She wants me to brush bear-bear's hair everyday and put a rubber band around his hair "hat". She says that bear-bear is her other little brother.

She insists on wearing Abby's underwear, which look like big ole' granny panties on her teeny body. Seriously, they go up past her bellybutton.

She has no reservations about holding wiggly earthworms, alive frogs (at least they're alive before she holds them), lizards, snails, and caterpillars. Bugs, however, are her greatest fear. Give her a spider, and you will have claw marks all the way up to the top of yo' head. This is coming from the clawed-up horse's mouth.

She follows Nate around wiping the constant dribble of spit-up from his mouth. She is the first to tell me when her little brother needs a new diaper. And she insists that he is hungry every time he fusses. She's a miniature Sherri Crawford. (Only a few of you will get that.)

If you don't let her have something she really wants, she will always ask "But why are you not my best friend today?"

She puts her underwear on backwards 100% of the time. She puts her shoes on the wrong feet 100% of the time. She puts her shirt and shorts on backwards 100% of the time. I am beginning to wonder is she is clotheslexic.

She's two and a half...and I just LOVE this age!


We're on a first name basis with the storm that decided to set up camp here for all of last week. In fact, any inhabitants of states routinely hit by hurricanes have the honored privilege of leaving off the prefixes of these's a perk. And by saying "Fay" in any context of conversation for the next few weeks, everyone around will know exactly what you are talking about.

So Fay went directly over us, which was really a good thing because we got a lot less rain than our surrounding compadres due to the large sloooooooow moving eye coming right over us. But we got rain...oh yes, we got LOTS of rain. Enough rain to cause our backyard to fill up with what the girls call "the swimming pool". They love playing in our swimming pool, though we are really having to be extra vigilant of snakes now...wanna move to Florida?

They had a blast playing in the rain and jumping in the puddles and soggy grass. We caught earthworms and rescued pine cones that were destined to the gloomy despair of the street drain. The back side of the storm proved to be the worst for us...producing the highest winds and pouring rain. We lost power once for a while and then it flickered off and on for a few days. We suffered no damage whatsoever, but we had a couple of neighbors who lost medium-sized trees. It is the rain that soaks the ground and then causes the trees to uproot from the wind on the backside of the storm...of at least, that is my semi-expert opinion from living here for 4 years. Take it or leave it.
Don't mind the wedge...the poor child just takes after her mama. This is Em in the "swimming pool".

Next up: skeeter season. All of that free-standing water is a breeding ground for some nice blood-suckers. Really, you wanna move to Florida?
Nathan had his 6 month check-up today, and it went really well. I know that I have said this before, but the Lord has blessed us exponentially with wonderful doctors, nurses, and therapists through this journey with Nathan. Nathan is growing well! He still isn't eating as much as he should, but he is gaining weight nicely so I'm not concerned at this point. Our pediatrician said that we may need a little more OT in the future, but he is okay for the time being.

We had a wonderful heart-to-heart at the appt where we talked about the uncertainty for the future (for anyone, not just for Nathan), and how difficult it is to not be in control of every situation, but how wonderful it is to know that God is still on his throne through every circumstance. He is in complete control. I left the appt uplifted and once again thankful for this dear woman in my family's life.

She also said something that we get a lot, "Gosh, Amber. He looks so great. If you didn't look at his labwork or see the way he breathed or knew about his hypotonia, you wouldn't have any idea that anything was wrong at all." It's true. He looks great! He's happy and joyful and doing things that the average 6 month old is doing, and that is so wonderful to see each and every day. He has another neurology appointment on Thursday. We pray that the neurologist will shed more light into what he thinks Nathan's biochemical and clinical symptoms are pointing towards. I'll update when we know more.

Sunday, August 24, 2008

6 months

My dearest Nathan,

Yesterday, you scooted around on the livingroom floor, found a toy you wanted to play with, and sat up straight so you could play with it easier. It was the first time you have sat up straight by yourself on a hard surface (in other words, somewhere other than the grass). I gasped and told you how big of a boy you were, and your whole face lit up with the biggest smile ever. Oh, it made my day.
Now granted, you still fall back and bump yo' noggin every once in a while, but even that is cute.
6 months, Nate. Half a year. Where did it all go? This month has been a good one. You started really moving along the floor with your inch-worm crawling method. If you really want something really bad (like something your sisters have), you can get going pretty darn fast. You still tire out after a short time and need to be picked up to catch your breath, but I love using those times to rock you and nuzzle my nose into your neck creases to make you laugh.
Many times this month, I have heard the loud shrill "Nafey! No, No! Don't get my..." I just laugh, and you just smile. For some bizarre reason, you use your energy bursts of super fast inch-wormin' every time you see the opportunity to tackle a dropped "Bear-Bear" or Abby's prized pink poodle. You love these two stuffed animals that your sisters have claimed as their "hands off" property to everyone else. Often throughout the day, I hear "No, Nafey! That's my bear-bear!" You're a clever little dude. I think you do it on purpose. You got your pestering qualities from your dad...and your oldest sister.You started eating baby food this month. You like bananas, sweet potatoes, carrots, squash, peas, and guava. Yes, guava. And I like when you eat guava makes your poopy diapers smell rather tropical and exotic. Like you want to serve it on a platter with a pink umbrella stuck in it while you bask in the sunshine by the infinity pool. Dude, I'm serious.You do not like peaches...and chicken baby food. I don't blame you on the last one. It smelled like feet. Like old man fungus feet. You gagged so hard on the chicken that I thought you were going to throw up. It weren't purdy.I've had so much fun buying your baby food over the past couple of weeks. I just bought you some wonderfully appealing jars of food, and I can't wait to feed them to you. Mango, Papaya, Country Breakfast (this one had a ham on the front), Meuslix and Apples, Chicken Noodle and Sweet Potato, Corn Chowder, Stuffed Duck with a hint of lemon, Cedar Plank Salmon with capers and white wine pilaf. Okay, so they last 2 aren't on the shelves yet, but I think they would totally make great baby foods. But seriously, you are eating some 5 star baby foods compared to what they had when your sisters came up this 2 years ago.
Okay, now let's talk little dude. You are 6 months old now...almost grown, right? So why do you still insist on waking up in the middle of the night once (and sometimes twice) to eat? Huh? Sweetly enough (for me anyways), Abby has been praying that you would sleep through the night so I could get more sleep. She picks up on every little thing, and I thought that was darling...and maybe a little suggestive that I would be a better mom if I got a bit more sleep. Hmmm, I need to think about that for a bit. But come on, Nate! Please sleep through the night. Pretty please. With sugar on top. And a cherry. And some sprinkles.Your sweet expressions continue to win my heart over from the moment you wake each morning until you hit the hay at bedtime. Your smile literally melts me...seriously, the feeling my heart gets when I see it can not be put into words. I crack up at how you can effortlessly raise your eyebrows up and down when you are flirting with whoever has won your attention at any given time. But the new thing this month has been your bottom don't like loud noises or harsh play, and when those things happen, you poke that bottom lip out a mile and furrow your brow for a good 5 seconds before the waterworks start. It is so pitiful that it is cute. Cute enough for us to torment you every once in a while and jump out to scare you when you know we will get "the lip". But then we shower you with hugs and kisses, so it's all good. The girls were watching a cartoon this morning that you were very interested in...and then up popped a cow on the TV screen...and it mooed rather loudly. Out came the lip, to which I laughed hysterically and then gave you the talk of "you need to toughen up, boy. You'll never be a cowboy if you are scared of cows."You are the sweetest thing ever. You still snuggle your head right into my chest when you are tired, and I soak up every bit of it I can. You still smile the biggest squinty-eyed smile every time you are able grasp our attention. You are inquisitive and loving and fun. These are wonderful days, my son. We have no idea what the future may hold for us, but I know that I will always be able to look back on these days and smile. These are happy days.

Happy 6 months, Nathan Andrew.

Thursday, August 21, 2008

Curly-head makes another appearance

I thought that Emma's curls were all gone, but the intense rain and humidity from the past few days have brought that curly head back with a vengeance. It's nice to see it again.
So, Fay is upon us. In fact, the eye is literally coming right over us in the next few hours. It has been steadily raining all day, but the wind has just recently picked up and is it NASTY outside. You'd love it, Marty. Jay has been gone for a couple of days, but I am extremely thankful to say that he should be home really soon...and the university is closed tomorrow due to the tropical storm, so it's like a HOLIDAY! Woohoo!! We plan to take advantage of this warm rain and play in some mega puddles all day.

Abby: Mom, I think that taking a bath is making me shrink.
Me: Huh?
Abby: I shrink every time I take a bath.
Me: What makes you think that?
Abby: Because I measured myself before I took a bath and I was this tall (motioning the height on the wall), and then I measured myself after my bath and I was shorter.
Me: But what makes you think that the bath is making your shrink?
Abby: Well, because clothes shrink when you wash them in hot water, and I take hot baths.
Me: Dude, you are way smarter than I ever give you credit for.
Abby: Yeah, I know.

Wednesday, August 20, 2008

I could literally EAT him up!

I wanted to save his 6 month pictures for his 6 month post, but alas, this one has been calling my name all morning. Plus, I wanted to show off his new skill...he's sitting up tall every once in a while. Granted, he will only do it when he is on the grass, go figure, and it only lasts for a couple of seconds before he slumps down or topples over, but LOOK HOW BIG HE IS!!! And I know that he's my kid and all (barring any unseen baby exchanges after I gave birth to the kid), but he's is just so darn cute to me. I mean, those cheeks...and those lips...and that whole entire face. I just want to pinch it the very sweetest of ways.

Dude, this kid is going to be spoiled. I foresee it already.

This week has been so great! It is our "off" week for the month of August...even Nate's PT appt was cancelled because his therapist is sick this week. All that we have had to do so far is get some additional blood work for the little guy (should have those results sometime today). This tropical storm has given us some nice cool weather that makes it feel so much like fall time around here...that is, if your fall time still consists of 85 degree temps, BUT with a cool-ish wind. It has given us the first opportunity we've had in a long time to go to the park and play outside in between feeder band showers. This storm is supposedly going to come right over top of us sometime tomorrow, so the girls are pretty excited about getting to play in this steady tropical rain. This storm sure has made a nice lazy week for us!

On a side note, make sure you root for Eli Bremer tonight as he hopes to score a medal for Team US in the Modern Pentathlon in Beijing. Eli is the husband of one of my dear friends I went to grade school with when we lived in South Georgia, Cami Grebel Bremer. Here's more info on where and what time you can watch him compete on streaming video. And good thing that it is on streaming video, 'cause that's the only way we are able to cheer on our fellow Americans during these Olympics due to that fact that we don't have NBC here. I won't get started on that rant right now. But I was bound and determined to let the girls enjoy one of my favorite pastimes as a kid...just modified a little with the times as they sit around the laptop, watching the Olympics.

Edited to add: Nathan is being referred to a hematologist/oncologist. His latest blood test from Monday show some more troubling numbers. His hemoglobin remained stable (yet still a bit low), but his haptoglobin dropped even lower (it is quite a bit low), and his liver function is even more elevated. But his white blood cell differential seems to be the most abnormal, producing his lowest neutrophil count so far at 9%. Hopefully our new specialist might be able to shed some light into his continually abnormal lab results.

Monday, August 18, 2008

The pictures that don't usually make the "blog cut"

This shows just how difficult it is to get a picture of all three of them...looking at the camera...making nice faces...and not licking each other...
or pulling someone's hair. But come on, do you really blame him for that one? And those of you routinely smell like soured milk after you hold the little guy will be proud of this everyday shot. But in all actuality, I posted this one for you, Sister Dina. Mmmmm, Yummy!
And this is what happens when you try to take pictures in hot Florida grass at sunset. You can't see them, but they are there. Trust me. BUGS! Itty-bitty flying green bugs that started crawling on Em's face in this shot.
And this is perhaps one of my favorite pictures of all times...taken during his 6 month photo shoot, where he was obviously ready to stop being propped up against sharp, scratchy propper-uppers. Oh, but I love that face...even when it is all scrunched up mid-wail.

Thursday, August 14, 2008

One more test behind us

Nathan is doing great! The day went off without a hitch, and it was definitely easier than I thought it would be. I was able to hold the little fella until he fell asleep while they put the mask of anesthesia on him, and then they put in an IV and whisked him away for the MRI. While it was tough not being able to be with him the whole time, it was definitely one of the easier tests we have had to go through. They didn't even stick him until he was asleep. So, watching your child's limp body go under anesthesia is a whole lot easier than holding his head still during a spinal tap or holding his arm still during blood tests.

He was in the MRI for a little under 2 hours, and then it took a good 30 minutes for him to wake up. They used an oxygen cannula to keep his O2 sats up, so he didn't have to be intubated at all through the procedure. We got a kick out of him trying so hard to open his eyes and look around in the recovery area...the little booger is a curious fella, even when he can barely keep his eyes open. We had to stay for an additional 2 hours in recovery as protocol for all babies under 6 months old, and he was passed around by the nurses and talked to everyone who would listen. All in all, it was a very blessed day! He's a little limp noodle today since his muscles are having a tougher time getting back to normal, but he is all smiles and scooting all over the floor like normal.

We won't know any results from the MRI for a little while. The results will be faxed to our neurologist within the next couple of days, but I don't think he will give them to us until our appt in a couple of weeks.

While Nathan was in the MRI, I was able to run over to the records office at the hospital and purchase some of his lab work to keep on hand for reference. I did this purposefully to view the results of some additional labs the neurologist ordered at our last visit. The results were interesting, and we are anxious to sit down and talk to his neurologist at the upcoming visit. I won't go into depth here until we discuss everything with Nathan's doctor and gather more information on it, but it looks like we could be heading in the right direction for a diagnosis for our precious son. His appt is 2 weeks from today.

Thank you for your prayers. The Lord was merciful once again. Nathan had no problems, and the doctors and nurses took incredible care of him. The bit of nervousness that has been in the pit of my stomach was gone when I woke this morning, and it never returned all day. We missed the little fella when he was away from us, but we knew he was in good hands...the Lord's hands.

Wednesday, August 13, 2008


Nate's pre-op appt went well this morning. Since he will be put under anesthesia (the very first time I have written that word without spell check popping up...go me!) for the MRI tomorrow, he had to undergo pre-op this morning.

The nurse practitioner shared my concern about the possibility of malignant hyperthermia, and thankfully he will be given anesthesia that is safe for kids with muscle issues and not given the neuromuscular blocking agent "Succinylcholine". Some muscle diseases make a person more prone to experiencing malignant hyperthermia when put under anesthesia, which could be life threatening. It is rare that this happens, but it is serious if it does indeed occur. This is something that I have worried about for a while, and I am just so relieved that precautions are being made before hand.

His MRI is scheduled for 7:30 tomorrow morning. We'll be at the hospital for a good part of the day. Please keep the little guy in your prayers.

Tuesday, August 12, 2008


If I were at my parent's house today, my dad would take a seat beside me, lay his hand on my knee and quote his yearly ritual: "27 years ago today" he would start...

"Your mama told me that it was time to go to the hospital, so I drove as fast as I could on wet roads and almost ended up in the ditch. We got to the hospital and our precious baby girl was born. You were so small that I could hold your head in my hand and your feet ended at my elbow. And that night, my mom and dad took me out for a steak dinner and dad told me that tomorrow I would be walking you down the aisle and giving you away to some boy."I've gotten that story every year for the past 27 years...although the past 8 years have been told over the phone. It's a sweet story, and I have always enjoyed hearing it. And every time I laid in a hospital bed after giving birth to each of my kiddos I thought about it...and was glad that my husband wasn't out eating steak while I was eating unsalted overcooked hospital crapola and wincing from my uterus mutinying on me. So, 27 years old today. Those who are still friends with me despite knowing my quirky idiosyncrasies will tell you that I'm not all that excited about turning 27 only because it is an odd number. I don't like odd numbers. Thankfully, I was born on an even day (the 12th), and all three of my chillens were even kids too (the 28th, 20th, and 24th). Don't think I didn't think about that when I was giving birth to them. My husband...well, he's the odd one of the fam with a birthday on the 21st.

I know...I have issues.

(I really have no idea where my children get their big cheeks.)
Abby and I were looking at old pictures the other day when she stopped on my school pics. "What is wrong with your hair?!!?" she shrieked (see 1st grade below). "Ummm, yeah. Don't blame me...that was your Nana's doing." "What did she DO to your hair?" Although I can totally hear mom saying "It was in style then." Just like fanny packs and Chia pets. My hubby gave me a gift certificate for a night on the town by myself (ie: a little shopping) and a hot rock massage. Beast! My girls have given me countless hugs and "Happy Birthdays" over the past few days because they are really confused on the actual day of my birthday. And I got a "red-faced/heart beating ninety miles and hour" surprise at our shrimp n' grits get-together with our church family when they started singing "Happy Birthday" and had a cake there. Thanks guys! It embarrassed the crap out of me, but it meant a lot.
It has been a wonderful birthday. It has been a wonderful 27 years. The Lord continues to bless.

Friday, August 8, 2008

Mucho medical jargon

So, Nathan's blood results were still abnormal. Our Pulmonologist called this morning after he had consulted with a hematologist/oncologist about the blood test. Essentially, his blood tests have always been abnormal (we all know that now, right?), but they haven't gotten any worst. They haven't really gotten any better, but not any worst either. So we are going to sit and wait right now until he has another "weak" episode in a few weeks and test them again to see if they are dipping even lower during those times.

From what this report told us, (this is for you, delurker Dana...all that cool terminology) his hemoglobin, hematocrit, mean cell volume, and haptoglobin levels are all low. The Pulmonologist is a little concerned that he is breaking down his red blood cells during his "cycles". However, since his levels have always been lower than they should be, there is also the possibility that these levels are just a result of whatever else is going on in his effect of whatever is wrong with the little guy. If the results are even lower when we test him again during his next weak cycle, we will then see the hematologist. Though, from the Pulmonologist's reaction after talking to him, I don't think the hematologist knows what to think of these levels in relation to Nathan's other issues either. All together now: This kid is an enigma!

We did learn a bit of new info from this blood test though...Nathan's IgG (immunoglobin) level was lower than it should be. This is the level of immunity your body has to bacterial and viral infections. Since he was breastfed for the first 3 months, I would hope that this level would be higher than it is. Hopefully this doesn't mean that he is a bit immune deficient. I will be anxious to see what this level is at the next test as well.

I emailed some pics to our Dr. for his presentation of Nate's case on Monday...some of his belly breathing, and one of him turning grey around his mouth and eyes. Oh, if I could be a fly on that wall on Monday...

Thursday, August 7, 2008

Squash: goooood! Peaches: baaaaaaad!

Wednesday, August 6, 2008

DUDE! My kid is famous!!

Today was Nathan's pulmonology appointment where I learned the ever so exciting news that Nathan's case was being presented by our Pulmonologist to the Department of Medicine at our Med School on Monday. Essentially, all of the "heads of..." departments (ex: head of pulmonology, head of cardiology, etc) and med students will be there. I wonder if our neurologist will be there...he is the head of Pediatric Neurology.

The nerd in me goes "NO WAY!!!! That is soooooooooo cool!" In fact, I believe that those were my exact words when our Pulmonologist told me today. The mom in me now realizes why it is taking so long to diagnose my poor son. This really is a tough case. A case worth "presenting" to the med school. Dude, he is so famous!

I went to today's appt with very little expectations. Nathan has never had any lung issues...just issues with the way he breathes, so I never really expect much from a "lung doctor". Funny that they are the ones that have caught the hypotonia and today's mystery...

Our pulmonologist said that he has been studying Nate's case from the beginning for the past few days in preparation of his presentation on Monday and he has found that Nathan's blood tests have never been normal. "In fact, they have been very abnormal" he relayed to me. I told him that I was aware of this, but my questions about this a couple of months ago to a different doctor were ignored. I have kept Nate's paperwork of his blood work from his first two months of life because I knew that they were highly abnormal and wanted to keep them as files for the future. And because I am a total nerd and like keeping them for reference. (Don't tell anyone, but I have always secretly loved any medical crap I can learn.)

Anyways, he is very concerned with his heamtocrit, red blood cell, protein, liver function, and hemoglobin levels. Does any of this sound familiar? If not, go back to the month of March where we went through all of this to begin with. The problem is that these blood counts got lost in the shuffle between specialists, and no one thought to look into them more. I am just so thankful that our Pulmonologist is presenting Nate's case as his "presentation" and has had the time to study him a little more than everyone else.

Nathan had a complete hemolytic workup at today's visit (a blood test). He didn't even flinch when they stuck the needle in his vein. I didn't know whether to celebrate that blood tests don't bother him anymore or be sad that a needle prick doesn't warrant even a yelp from my sweet son. I chose to celebrate by telling him that he was such a brave boy and shower him with kisses. Our Pulmonologist will call us on Friday with the results from today's blood work. If anything is out of the ordinary, we will be referred to a hematologist.

A blood or bone marrow disorder would be something that could cause his tachypnea, tachycardia, dusky/blue spells, and pale skin. However, nothing blood realted could cause his hypotnia or respiratory muscle weakness. And essentially, that is where our Pulmonologist gets stumped. You see, this Dr. has a son that was born the day after Nathan, so he is very aware of how a 5-1/2 month old should feel. Where we have seen so much strength and progression in Nathan lately, our Pulmonologist brought us back to reality with his assessment of our little man. He is still pretty low toned in his trunk area...from his neck to his hips.

Our Dr. said that it was very good that we were keeping Abby home this year instead of sending her to preschool...something that we have been told before. Nathan needs at least another year to work on strength for his respiratory muscles before he is exposed to the full gamut of "kid" germs. Essentially, kids with weak respiratory muscles often present with a weaker cough than usual. If you don't have strong cough to keep your lungs clear of the junk that accompanies colds, then your lungs are susceptible to more respiratory infections, bronchitis, and pneumonia. Needless to say, we will put stock in Purell once fall rolls around. And just a heads up...we are not supposed to pass the little man around at church during the cold season (though we will probably keep a bottle of purell at our bench when the time comes...wink, wink).

So, it was a very interesting appointment, to say the least. We should learn more on Friday about his blood levels. Personally, I don't know what to think. Part of me wants them to be abnormal so we know more of a direction to go...but then, what about his hypotonia and muscle weakness??? Then part of me want them to be normal so we don't have to add one more element into this mix. It's like what I have been telling people lately...I pray that we are given a diagnosis so we can get out of this limbo period and know more of what to expect. But I also pray that Nathan be healed of everything that is wrong with him. They pretty much go against eachother, huh?

The great news of the day is...we gave back the heart monitor! I can not even explain to you how nice it is to pick up and move little Nateman without having to pick up the monitor also. And in the words of Abby "YAY! We don't have to hear the loud beeping anymore!!" However, the monitor gave us a lot of great showed that Nathan is tachypneic most all of the time when he is awake still. And more importantly, it showed that he is tachycardic more than he should be as well. A referral to a cardiologist is still in question between our Pulmonologists...I think they are waiting to see what the hematologist says about the referral first.

So, that's our day in a nutshell. The past few months have been complete emotional rollercoasters, and that feeling just doesn't seem to end. I am anxious to see what his latest blood tests show...both the tests that were run today and his genetic tests for mitochondrial myopathy from last month. He is showing so many symptoms of both.

Please continue to pray for our little man.

Tuesday, August 5, 2008

Who moved my cheese?

Go ahead. You can pinch 'em. I know it is too hard to resist. I'm just glad that I have him around all day long so I can pinch those scrumptious thighs any ole' time I want. I also like to poke my finger inside his little cellulite holes. Oh, if only cottage cheese thighs could be that cute the older you get. Oh, and off the top of your head, does anyone know how to get sliced American cheese off the bedroom wall? It's molded in squished on. And some of it has melted into the grooves of the wall a little due to our desire to save the world in this energy crisis save money on our freakishly expensive utility bill and keep the thermostat at apparently the same temperature that sliced cheese melts on walls.

Somehow, I can hear my mother snickering via the internet in a "you get what you deserve" sort of way because of the time that my brother and I thought it would be hilarious to throw bananas on the ceiling. It was hilarious. I remember belly laughing every time that banana would stick. And ironically, that was the exact same reaction that came from the cheese perpetrator.

Monday, August 4, 2008


I dip the knife into the jar and pull out a heaping amount of peanut butter to smooth onto the bread. Nathan sits in his exersaucer while the girls take turns popping up from the floor with an over-exuberant "Boo!" that causes a burst of deep laughter from their little brother. I cut each of the PB&J sandwiches in half but leave the crusts on this time in hopes that they will start to eat them one of these days. As I cut the last sandwich and listen to more laughter, the feeling of complete contentment comes over me.
I stand there for a minute...just listening. This is what I have wanted my whole life. This life. This marriage. These children. Oh, how I have so much to be thankful for. Last week was exactly what we needed. With only a PT appt and a visit from our home health nurse, it was as if we had a "free" week. Our schedule has been so hectic over the past few months that it was so nice to take a week off to recharge, so to say. And to spend some much-needed one-on-one time with the girls. We read countless books, played in rain puddles, put together Strawberry Shortcake puzzles, and finger painted. I just don't do messy art (remember, I like digital photography...with computer mess), so letting the girls paint was a huge thing around here. And I am pleased to report that I only had to tell Emma not to eat the paint once. My girl...she's growing up on me.

My list of chores was completed. Well, all except for purchasing a new cell phone, but after talking with church friends a couple of nights ago about their previous mishaps with water-logged (in my case, formula-logged) cell phones, I decided to insert the battery again last night and see what I got. Would you believe that the sucker turned on good as new. Beast!
Nathan's PT appts have been moved back to the treasured 8:15am slot on Tuesday mornings, so Jay is going to be able to stay with the girls again during these appts. My friend who usually keeps the girls is teaching preschool starting in Sept, so I was thankful that we were able to get this early slot again. The Lord continues to provide in every little way.

Nate is continuing to do great! He is scooting all over the livingroom, and I just love seeing it! He has a pulmonology appt on Wednesday where we hope to be able to give back the heart monitor. Nathan seems to be plagued with mysterious fevers periodically that causes havoc with his heart monitor...he had 2 separate days of these fevers last week. The fevers usually don't go above 101 degrees, and they only last for about a day each time. Just one more of the mysteries that envelop the little guy. But he is strong, and he is sweet, and he is continuing to be blessed in growth. And for that, we continue to be extremely thankful.

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