Tuesday, September 30, 2008

Quick update

We're all still here...just tired and busy as can be. Nate's GI appt was today, and it was pretty uneventful. His AFP marker came up again, and his GI doc has no idea why. It still isn't terribly high...if it was signaling tumor activity, the level would be in the 100+ range. His level from last week was 20 with a reference range for the test of 0.0-8.7. Like I said, not terribly high to signal immediate trouble, but it could be signaling something else since it is rising just a wee bit instead of continuing to go down (the level was 15.7 a couple of weeks before).

Our GI doc said that he needs to do some research and get back to us because he has no idea what could be the problem. Hmmmmm, seems to be the story of the past 7 months. We see him again on Halloween.

He seemed to be a great doctor and was super nice, but it was a frustrating appt because he had no ideas and more questions. He was wondering out loud about Nathan's elevated platelets over the past month and self-questioning if an immune deficiency could cause elevated AFP levels, etc. He also noted that Nathan still has ankle clonus, which is a neurological symptom that should have gone away a few months ago. Him bringing it up at this appt triggered a memory of our neurologist briefly mentioning it a couple of appts ago...and I am kicking myself in the rear for not inquiring more about it at either appt. There are always so many little things you forget to discuss...adding to the frustration of these days sometimes. Oh well, we see our neuro again on Thursday, so I'll ask him about it then.

One of my best friends, Tara and her daughter Jolee (one of Abby and Emma's best friends) spent the night with us last night so she could keep the girls for me today through Nate's PT and GI appts. We had so much fun, but stayed up way too late talking...hence the exhaustive rambling tonight. Thanks so much T! I had a blast!!!

Of course, can't leave you without a picture...

Friday, September 26, 2008

Proof that Emma truly is cantankerous sometimes

...but pretty darn cute too.

Thursday, September 25, 2008

Clue that it's time to loosen the straps

Abby was trying to buckle Emma in her car seat this morning (she's such a big helper...I don't say that enough) and with concerned frustration and a little sweat accumulating on her brow, she proclaimed that she just couldn't do it today. When I asked her why she couldn't, she replied "Because she's just too much of a fat girl. All of her fatness is keeping me from being able to buckle her."

After explaining that Emma will claw her eyes out if she says that in another 10 years or so, I pulled the tight straps over Emma's lasting baby squishiness with a grunt and a promise to loosen the straps later.Yes, that is indeed underwear on her head. She wore it all morning calling it her "new hat".

A little medical recap of this week: We were released from hematology yesterday! Woohoo!!! Although our hematologist was by far my favorite doctor personality-wise, it is nice to have one less specialist at this point. Nathan's absolute neutrophil count is finally normal and has been for the past 2 lab tests. She said we do not need to come back unless we start seeing his neutrophil count creep down again, which would mean that he could indeed be suffering from cyclic neutropenia...I don't think that is the case though.

On the day we were released from one specialist, we were referred to another: Genetics/Metabolics. We have had a couple of doctors make reference lately that it is indeed time for us to see them, and our pediatrician made the final decision yesterday and called in for the referral. Some new information lately has made us take a closer look at Nathan's organic acid panel that was taken back in April, and we are seeing some elevated levels that are usually indicative of mitochondrial disease and another that is sometimes indicative of a fatty acid oxidation disorder that inhibits mitochondrial metabolism. We hope that a geneticist who specializes in metabolics will be able to decifer what the spilling of these organic acids in his urine are pointing towards. We do know that all of what he is spilling is pointing towards an inefficiency in energy production, so that helps us know why he just doesn't seem to have as much long-term energy that he should and why he tires out so easily.

Regarding the immunology referral: we no longer have a pediatric immunologist at our hospital, so the rheumatologist has been taking all of the immunology patients. The poor doctor is stretched thin, so it is taking a while to get in to see her. Our hematologist talked to her yesterday about Nathan, and the rheumatologist is definitely wanting to see him. She said that he could either have an immune deficiency or an IgG deficiency, so we are having an extensive immune deficiency workup with lab work before we see her. Nathan is also being tested to see if he has any titers (antibodies) to the immunizations he has had previously. If he hasn't retained the titers, he will have to be re-immunized for each one until he starts to show them...that is, when we are given the green light for more immunizations.

The other great news is that his AFP (tumor marker) is starting to come down. It is still high, but coming down on its own. His liver just seems to be moving a little slower to get rid of some of these levels, but it is indeed getting rid of it.

We see GI and neurology next week. Busy times, as usual.

Wednesday, September 24, 2008

7 months

My Nathan,

I stood against the sink loading the dirty dishes into the dishwasher as I kept one foot positioned on the bottom rack, carefully keeping it in place as you swatted at the silverware. Crawling into the kitchen to see what I was doing, you were mesmerized by this new discovery. You pulled your body up holding onto the lid and played in the water that dripped. I would routinely look down at your strawberry-blonde head and just marvel at the progress you had made this month...crawling everywhere, pulling up to standing, being completely curious of the world around you. You have been blessed beyond measure, my sweet boy.
This month was indeed a transformation for you physically. As we were constantly fed a stream of poor medical news this month regarding your little body, you were constantly growing and developing just like any baby your age and even older. We would be down in the dumps about a certain test that came back abnormal, but you would get on your hands and knees and crawl over to us, use our bodies as leverage as you pulled up, and lunge into our laps for some loving. I completely believe that this is the Lord showing us that he continues to be in complete control. Things may not look good on paper, but look at how much the Lord has protected you these 7 months. You have been blessed beyond measure, my sweet boy.
I often get asked, "So do you see a difference between Nathan and your girls yet?" And I can finally say, "YES!" I love to sit back and watch you play with toys...with remotes...with the wheels on the baby doll stroller...with magazines that have mistakenly been left on the floor. You play with things so differently than the girls did. You hit everything. You even hit yourself a lot, throwing your right hand in the air like you are riding a bull and bringing it down on your thigh over and over again. When you don't want to go to sleep, you stand in your crib and repetitively hit the wall separating your room from your sisters'. You also throw things. Anything within a 5 foot radius is fair game of a beating when you pick up something small enough to be thrown.
You like different toys than the girls did as well. You will search and find the only 3 cars we have in the house (note to grandparents: we need cars for Christmas) out of a whole basket of toys, and you will spin the wheels over and over. You like to study toys, picking them up in your chubby hands and turning them all around studying every intricate detail on them. But your favorite "toy" so far would have to be the laptop that must be kept in high places at all times now. You love the feel of the keys under your fingers...you don't hit them, but rather tap on them like you have been sitting at a computer all your life.Even though you are rough and tough and such a boy when it comes to everyday life, you are usually extremely gentle with people. You absolutely adore long hair...often when I am trying to rock you to sleep, you will wrap your tiny fingers into my hair and slowly pull until you have reached the end of the strands, then repeat until you are too tired to move. You love to run your fingers through your sisters' hair as well...never pulling maliciously (yet) and always gentle and sweet. Abby let's you play with her hair. Emma does not. But are you really that surprised?
Within the past week, you have started reaching for people to hold you. You LOVE when Daddy comes home and will immediately stop whatever you are doing and lunge for his strong arms. You are my little snugglebug, often burying your face into my chest for a game of peek-a-boo, some loving, or a little comfort. I asked you for a kiss today, and you whipped your head to my cheek with an open-mouthed slobbery one. It melted my heart.You still suck your thumb at night, but you rely on a paci more and more during the day as you stop to take frequent breaks for periodic energy boosts. You have a special little stuffed puppy that you sleep with every night, rubbing his ear or tail or foot against your face as you fall asleep. We have named him Tebow.This month has been a blast watching you develop. Your smile continues to brighten our day 100 times over. Your personality makes my heart swell, and you continue to make people fall in love with you where ever we go simply with your reaction to their presence. I love that about you. I love so much about you. And my darling boy, we have been blessed beyond measure by having the opportunity to call you our son.

Happy 7 months, Nafey.

Sunday, September 21, 2008

'Tis the political season

Emma: Daddy, I can't find my bubble gum. How 'bout I just have some of Abby's.
Jay: You can't find your own so you want Abby's?
Emma: Uh-huh.
Jay: Spoken like a true democrat. Can't find a job so you want other people who have jobs to pay for you. Do you want to be a democrat?
Emma: Uh-huh.
Jay: NOOOOO, you want to be a republican.
Emma: Nuh-uh.
Jay: An independent?
Emma: Nuh-uh.
Jay: Green party?
Emma: Nuh-uh.
Jay: You can't have your sister's gum. Go find your own.
During school today, we were talking about our eyes. I asked Emma what she did with her eyes, and her reply was, "I cry and cry."

And a little later, we were talking about professions when I posed the quintessential "What do you want to be when you grow up?" question:

Abby: I want to be a Mommy.
Me: (totally beaming with pride at that answer) Well, what do you want to be Em?
Emma: I want to be a Daddy.
Abby: You can't be a Daddy...you're a girl.
Emma: (with her perfected whine) But I just wanna be a dadddddddyyyyyyy.
Me: Fine. whatever.
Abby: (whispers just loud enough so everyone can hear) Ugh! She is being so cantankerous today!

Thursday, September 18, 2008

Look who feels better...

...with fake smile and all:
She kept every ounce of liquid and food down today, and that makes a concerned and weary mama very happy. She was still quite a bit weak, having to stop and rest multiple times throughout the day. I asked her to get dressed this morning, and I went to check on her when she didn't come out of her room after a good 5 minutes. She was dressed...and laying on the floor staring at the ceiling. It just took everything out of her...talk about breaking your heart! She was rested up enough this afternoon to lay on the floor so we could do a little school, and we both enjoyed that little break in the day.
Emma, on the other hand, decided to prove the law of motherhood in that "if you clean it, they will dirty it." by spewing all over my freshly steam-cleaned carpet and couch. Nice one. And then she had an accident of other origins on another part of my freshly steam-cleaned carpet. It weren't purdy. I know I should have waited until I knew everyone was finished purging the contents of this virus before I brought out the steam cleaner, but I just couldn't handle the nastiness anymore. Plus, I've got a baby crawling around on that pukey floor.

Emma had to receive a phenergan shuttle this morning, and that turned out to be the debacle of the century. Just ask her about it...she'll tell all. We were all a bit traumatized after that 20 minutes.

But for the most part, I came on here to proclaim:


Wednesday, September 17, 2008

Crikey! Will this ever end?

Okay, we're really alright, but I have been wanting to use "Crikey!" for a while now and figured it worked best for today.

But yes, when will this virus ever end??? Abby and Emma both got sick again last night and Abby got sick after she woke up this morning. This is day 6 for her, so I am taking desperate measures and keeping her doped up on phenergan all day and trying a new strategy with fluids and food. The poor chic is STARVING. It has been 6 days since she has eaten much of anything...and she seems to puke each time she gets anything in her belly. She's lost a full 10% of her body weight, putting her on the scales at 36 pounds of pure skin-covered bones. With the phenergan today, she has been able to keep down a cup of liquids and a plain waffle. Score! She's still so hungry (that's a good sigh, eh?) but I am limiting her food to just a little something (crackers or dry cereal) every hour or so. I hate telling her she can't eat when she is so hungry, but we've GOT to stop this vicious cycle.

Emma is handling it really well, and she hasn't gotten sick at all today. I was assured this morning that I could give her a half of phenergan if she started getting sick again today...to which she ran in the other room and hid when she caught wind of the sneaky plan to stick things where they are not meant to be stickened. So far, she hasn't needed it.

I am doing well...thanks for everyone's emails. Jay has been gone the past couple of days with work, but he gets home to relief pitch tonight. I'm out of carpet cleaner and I think we need some good bacteria-building yogurt, so I'm sending him off for a grocery run before he even gets home. The good thing about the girls being so sick is that with all their laying around and sleeping, I have been able to catch up on a LOT of house work that has been pushed aside for the past, oh, forever months or so...give or take a few. And I just watched last night's new episode of House...you really need to start watching that show if you don't already. But I have started breaking up the girls cartoon watching with bursts of book-reading and song-singing and story-telling before their minds completely turn to mush.

Now I'm no immunologist (though I did stay in a Holiday Inn Express one time), but I think that Nate's quirky blood work has really helped him out with this nasty virus. You see, little dude has an absurd amount of lymphocytes at any given time...these are the virus-killing white blood cells. From an amatuer's point of view, I think this is what helped him fight off this virus so much easier than the girls. Now if this had been a bacterial infection, it might have been a different story since his neutrophils (the bacteria fighting WBCs) are normally low. Score one for quirky blood cells!

Tuesday, September 16, 2008

Round Two

Abby is doing a LOT better! The phenergan knocked her out yesterday and allowed her body to consume and keep down some liquids and a few crackers. She woke up this morning still really tired and weak, but feeling 10 times better. I have seen her energy level gradually pick up as the day has worn on.

Emma woke up this morning and headed to jump into bed with me, but decided to take a detour to the livingroom instead and toss her cookies in the middle of the floor. Since we are talking about our wish list of new furniture, might as well add new carpet to that as well. Do they make a microfiber carpet that costs...like...small change?

As soon as she "frew up", she started freaking out and crying, "I don't wanna have medicine in my booty hole!!!" Turns out that yesterday's suppository adventure was more traumatic for Emma than anyone. And thankfully, she has only thrown up once...her other end is a different story. But I can take that any day of the week over puking. At least she has always made it to the toilet with the runs.Here's hoping that this nasty virus doesn't wrap around and get Nathan again. He had a great day yesterday and had more energy that I have ever seen him have. We usually have to have quite a few cool down sessions throughout the day where he just sits in my lap and sucks a paci for 20 minutes until he reenergizes and hits the floor playing again, but we only had to do that once yesterday. Today is a different story though as he is just exhausted and cranky.

The cool news is that Nathan is the new proud owner of a pair of bottom chompers. They popped through a few days ago, but I kept forgetting to announce the milestone...that is, until he bit down on my hand this morning and left teeth marks. The stinker.In other news, keep little Hailey (my neice) in your prayers. They are keeping her in the hospital a little extra time because she has dipped under the 4 pound mark. She also has a VSD (hole in her heart) and is undergoing some additional testing to make sure everything is okay. Gosh, I wish I could head up there so bad right now.

Monday, September 15, 2008

Gatorade LOVES us!

I have a sick sick sick little girl on my hands. Abby's little fever and runny nose turned into a tee-totally nasty stomach bug that is still causing our house to smell like febreeze and lysol covered puke. If it weren't still 95 degrees outside, I could air the house out a bit. I'd recommend no one coming to visit until either puke-scent comes back in style (who said I can't be a trend setter?) or until it cools down and I can open the windows for a day or twelve.

Oh, and we need a new couch. Yes, indeedeo, a new couch is a MUST at this point. And perhaps a new recliner. I have no idea why I even give her puke bowls...it seems that the immediate urge to purge overwhelms the ability to actually remember getting up and running to the bathroom or picking up the bowl that's been beside your head for the past 3 days.

We made yet another visit to the pediatrician this week (I forgot to mention that Nathan had this last week...though he only threw up once and had a solid week's worth of watery poop...I find it strange to call it watery stool, like something you can prop your feet on, so I use the more common redneck term around here, but I digress...). Nathan gave it to Emma (who had the exact sysmptoms as him for about a day and a half) and Abby ended up getting the brunt of this nasty virus. Nathan is firming up a bit now (nice picture, eh?) but has had a runny nose for 2 weeks that we are wondering if it is from this or something else entirely. Ramble, ramble, ramble, I forgot why I even started this paragraph.

Oh yeah, today's visit to the ped gave Miss Abigail a prescription for some phenergan suppositories to try and stop this pukefest. Dude, suppositories give me the heebeegeebees...or in the words of a pale Abby "Mom, I don't think this is fun at all." So far, so good as little miss lays on the puke-scented couch half-glaring at her 4th day straight of continuous cartoons. Hopefully she will start to perk up and be old Abby again in a day or two.
I would like to ask you to remember little Landon Weber in your prayers. (click on his name to go to his website) He's a darling little boy with mito who has been in the hospital in Houston for almost 60 days trying to fight off a nasty infection. He was intubated on Friday night (just before the hurricane hit) and put to sleep so his body could use every ounce of energy it has to fight this infection instead of using the energy to breathe and process food, etc. He and his family have been heavy on my hearts for a while, and he needs your prayers! Please lift him up to be healed from this horrible infection!!

Friday, September 12, 2008

All you can do is laugh at all the craziness

Introducing...Hailey Marie, 4lbs 3oz, born September 12, 2008: My younger sister, Ashley, went into labor in the middle of the night last night and had a baby girl by c-section at around 10:00 this morning. Thanks so much to many of you who emailed me the pictures they had received so I could put a pic up on here! You guys rock!! Hailey is doing great...her apgars were 9, and she is able to be in the same room with Ashley. She's just an itty-bitty wittle thang.

My youngest sister, Bethany, had ACL/LCL surgery on her knee yesterday and is at home recovering...and in some rough pain. I wish so bad that I could drive up there and help out with everything going on, but I just can't make it work out.

Abby woke up this morning and told me she didn't feel good. She is now quarantine to my bedroom with a 101 degree fever and a snotty-nosed Emma at her side watching copious amounts of Tom and Jerry and being threatened not to get near their brother. And I just received word that Emma drank all of Abby's water. Beast.

Seriously, all you can do is laugh at this point.

Thursday, September 11, 2008

Another one of the medically technical posts

I know that I get too technical with these medical posts about Nathan, but I am mainly just writing all of it down for myself. It is so good to put everything down and then have something to refer back to during this journey.

It seems as if the Lord knew that we needed some good news at Nathan's neuro appt today. When you repetitively get bad news, it just gets overwhelming, and this has just been one of those weeks where I felt like I couldn't quite catch my breath. It's hard to hear so many things wrong with your son when he looks so good.

So the good news: After our neurologist has centered most of the convos and tests over the past 3 visits around the fact that he thought Nathan had a form of mitochondrial disease, he said for the first time today that he was thinking that he actually may not have that now. Essentially, cognitively and gross motor wise, Nathan doesn't look like other mito kids. He has really developed a lot in the past month, and the neuro is extremely pleased in his progress. The only thing that is a throwing everything off is his elevated latate/pyruvate levels and the fact that what ever he has seems to be systemic (affecting quite a few of his systems).

But I'll take his wavering on that diagnosis any day of the week! We don't want mito...not that we want Nate to have anything, but we really don't want that progressive and unpredictable disease. Oh, it is just a huge weight off my chest to know that our neuro is merely thinking mito may not be the culprit.

That being said, Nate is going to start on what has usually been considered the "mito cocktail" at the first of next month after we get back some additional blood tests. It is a group of supplements (carnitine, CoQ10, B vitamins, etc) that are used to help his body with energy consumption. And there is still a muscle biopsy in question, though we won't do that anytime soon and we'll have to travel to either Cleveland or Atlanta to have it done. For the most part, he just wants to watch Nate for a little while and see if he continues to develop as well as he is currently. Also, there are still quite a few genetic mito tests out there on Nathan that are going through DNA sequencing right now...he said some of these will take 6 months to come back.

Part duece: Our neurologist is, however, concerned about Nathan's liver and is anxious to find out what the GI doc says at our appt on the 30th. On top of that, his latest lab work showed that his IgG level dropped even lower, so it looks like Nathan might indeed have to start having IVIG (intravenous immunoglobins) once a month. We'll find out more when we see our hematologist on the 24th. And, our neurologist referred us to an Immunologist...specialist #5. We are also not to give Nate any more of his immunizations for the time being until we can shed some more light on what is happening in his little body.

Again, a lot to absorb, huh? This is why I do not go to these neurology appts alone! I can take Nathan to any other appt by myself and pretty much get all of the info I need, but there is so much thrown at us during the neuro appts that I definitely need Jay's ears as well.

Nathan's doing great! He started on prevacid this week. We have known that he has had reflux for the past few months, but it hasn't seemed to cause him any discomfort. But he's spitting up regular food now and starting to seem a little more uncomfortable sometimes, so I told our pediatrician that it was probably time to start him on reflux meds. But he's doing great...always our happy little man.

Wednesday, September 10, 2008

I can taste the latte' already

Up in this hood today, there has been mucho tears, gnashing of teeth, snide remarks, sibling spats, rolling of eyes (that would be me), sighs, and a whole lot of huffing and puffing going on. This tumultuous scenario could only mean that either all of us are going through PMS at the same time (if you don't think a toddler can go through PMS, I'll give ya my chillens for a little while) or it is indeed the heart of summertime in FL coupled with one of the worst skeeter seasons we've seen in a long time.

Will the fact that I'm typing one handed so I can continuously scratch the 4 new red mounds of itchy flesh I received last night from a nasty ole' booger who obviously camped out in my bedroom give you a clue? Holy long sentence, Batman.
Dude, these mosquitos are killing us this summer. We have a new breed of skeeters this year that are producing blood suckers that are the size of a small goat, I kid you not. Well, maybe I kid you a little, but they are beastly huge. Abby keeps thinking they are wasps. There were 3 of them that landed on Nate the other afternoon as I was taking the page boy pics, and we were only outside for a grand total of 3.07 minutes.
So, we have reached the time of the year where our summer is like the north's winter, and we just can't go outside for more than a few minutes at a time. The girls are getting a bit stir crazy and literally climbing the walls and silently threatening to put their mama in the looney bin by week's end. I am pretty good at admitting when I have reached my breaking point, so it looks like a nice and QUIET evening at a local coffee house with a book that I have only been able to read while waiting at doctor's offices lately will be in order as soon as Jay gets home in a few hours. Time to recharge the batteries a bit.

Monday, September 8, 2008

Look what the little dude can do

Okay, no more cowboy pics...how about cute little page boy pics? All he needs is a good pair of suspenders:So, the little dude can stand on his own. How cool is that? He started pulling up to standing in his crib a little over a week ago...I walked into his room to check on him and saw him standing for the first time. I screamed with excitement and he gave me the bottom lip poke from being freaked out by lunatics bee-bopping into his room and screaming at him. He obviously wears his feelings on his bottom lip. Now, if someone can kindly remind my son that we do not need to practice this new cool skill of partying in your crib in the middle of the night, that would be grrrrrrrreat! Nate's hem-onc appt was this morning. Our hematologist is a sweet little woman who laughs a lot, so we hit it off from the start. I love her personality and am once again thankful for the wonderful doctors that are treating Nateman. Nathan was in typical Nathan-fashion today and literally lunged into his doctor's arms and gave her more smiles than I thought was humanly possible.

We were referred to her because of Nathan's neutropenia (low absolute neutrophils) and other quirky bloodwork. His neutrophil count was a bit higher today...the percentage was still low, but his abs neutrophil count was in a more normal level. It looks like he could be suffering from cyclic neutropenia. The only way to know for sure is for him to have blood work done every week for 6 weeks. I told the Dr. that I wanted to hold off on testing him for it unless he started having recurrent bacterial infections, and she was completely fine with that decision. I just hate having to do any more bloodwork than we are currently doing already...I mean, he was stuck twice today for blood tests. Even though he doesn't seem to mind the tests that much anymore, I still hate for him to endure them.

The one thing that she was really concerned about was how low his IgG count was. She said that on paper, it looked only mildly low, but it was very very low for someone Nathan's age. So low that if his levels are still that low from today's lab work, he will more than likely have to start having IV infusion immunoglobins. She is going to talk to our neurologist about this, and we go back to see her in a couple of weeks.

So right now, we are concentrating on his IgG counts. It does look like Nathan might have some sort of immune deficiency, and we are so thankful that he hasn't really gotten sick before now (he has a runny nose right now). She also said that she will probably want to do a bone marrow biopsy whenever he is put under to have a muscle biopsy to take a better look at his cells and see why his blood work is coming back abnormal.

All in all, it was a great appt. I know that sounds like a lot of frightening information, but it was all pretty much expected. The bad thing about the internet is that it will scare the begeesus out of you with any medical info you may have, but the good part about it is that it will prepare you for the next steps you know you will eventually have to face. The hematologist also said that we would probably be referred to genetics/metabolism soon and to ask our neurologist about that. We see him again on Thursday...another long day at the pediatric specialties clinic.

Sunday, September 7, 2008

Photo shoots

I took the month of August off from photo shoots due to our crazy schedule, so it has been so nice to be back in the saddle this month. I am completely full for September shoots, but I am taking appts for October and November (taking December off to do some Christmas shopping...are we seriously already to this point in the year??). Let me know if you want to schedule a shoot...I only take about 3-4 a month, so they are filling up fast.

It was so wonderful to see a dear old friend from my childhood today...it has been like 15 years since we have seen each other. And I had the wonderful privilege of photographing her gorgeous children after church this afternoon. Gosh, it was so much fun!! After the very short afternoon, we promised to meet up again soon so that our kiddos could play some more (I am holding you to that promise, Betsy!) and parted ways once again. As soon as we saw each other today, it was as if 15 years had never been between us and we began conversing like we have been best friends for years...gotta love those PB friendships!! It was a fun afternoon, and here are some pics of her gorgeous chillens:And like always, more shots from both photo shoots this week are on the photography blog.

Saturday, September 6, 2008

Mini Marlboro Man

With a Marlboro-flavored thumb...although, Nate's addiction is a lot healthier than the original Marlboro Man's.

Friday, September 5, 2008

Is this week already over?

Man, these weeks are just speeding by with warp speed! Every time I turn around, it is already the weekend...BEAST! This has been a busy and fun week, starting with a laid back Labor Day around here. We laid around the livingroom all morning watching TV and drinking coffee, and the girls watched entirely too many cartoons all day. It was a wonderful relaxing day. Mid-afternoon, we all headed outside to play in the water via washing the van.
And of course, we had the cowboy photo shoot that day which produced some of my favorite pictures ever.
Some of our close friends who moved to Cleveland a couple of years ago came down for a visit. They have two precious girls who are close to our girls' ages, and it was a wild and crazy party for 2 days. The girls LOVED it, and Abby totally boo-hooed when they left Wednesday night. We miss you guys so much!!
Here are a couple of shots from our photo shoot this week...I'll post more on the photography blog in the next couple of days.
So, today is our first day of "school" with the girls. They are both giddy with excitement and rushing around trying to finish their morning chores so we can get our learnin' on. This will also be the time that I try desperately to teach Emma to recognize the colors green and red. She has the others down pat, but those two stump her every time...hopefully she just needs a little more time with those. Because seriously, girls are not supposed to be color blind.

Wednesday, September 3, 2008

The good and the bad

The good news: Nathan more than likely does not have cancer! The ultrasound of his abdomen looked great with no visual evidence of tumors, and his CEA level is perfectly normal.

The bad news: Nathan's AFP level was pretty high, indicating that something screwy truly is going on in his liver. His neurologist referred him to a pediatric gastroenterologist, bringing Nathan's specialist doctor count up to 4. Hopefully he can shed some light on the liver problem.

After poking a thermometer in the poor guy's rear every couple of hours for a few days, we are starting to figure out that Nathan's temperature issues seem to be related to his energy consumption. When he wakes up, he has a perfectly normal temp of about 98.0-98.5. As soon as plays around on the floor for a little bit, his temp shoots up to the 99.7-100.5 degree range...a good 2 degree differential. After talking to our neuro's nurse practictioner for a while today, she confirmed that with so many of Nathan's systems being affected, his problem is looking more and more mitochondrial in nature.

We have our first hematology appointment on Monday morning, and we meet with our neurologist again on Thursday morning. And from the way she was talking, I don't think it will take long for gastro to see him either. Even though it is tough to find more and more things that are abnormal with our little guy, we are thankful that we are getting closer to finding out what truly is causing all of this. And through it all, the little man keeps smiling and laughing.

Monday, September 1, 2008

The nekkid cowboy

That one's for you, Brother Darryl. Thanks for the boots!!

Internet is out...as in "I spent an hour and a half on the phone with foreign lady trying to figure out WHY it was out and finally asked for someone to come and fix it, I don't care if I have to pay for it, thankyouverymuch." It wasn't a fun afternoon. Jay's blackberry has come quite in handy today.

We have some dear friends coming for the next couple of days, so I may be a little absent. :)

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