Thursday, November 25, 2010

happy thanksgiving!

happy thanksgiving everyone!

we'll be hanging out with all our family and eating lots of food!

then, kyle leaves to go hunting, and i go to work, so jillian is spending the night with ammaw and papa. (not the traditional ending to thanksgiving, but we're making it work!)

i hope everyone has a wonderful thanksgiving!

i love this day!!

Saturday, November 20, 2010


we love our life, every single ounce of it.

but recently, we have been thrown a couple curve balls, and we're learning to love those now.

several months ago, kyle started having these weird symptoms of swelling and stiffness in his extremities. (hands mostly). so that took us to the doctor, and they weren't real sure, but thought it was probably carpal tunnel.

so kyle started wearing wrist braces, and taking anti-inflammatory meds. nothing.

back to the doctor, which took us to a neurologist, who said yes, you have carpal tunnel, but it's caused by something else, and he didn't know what.

well, then his lower legs started swelling, back to the doctor.

then to a rheumatologist, and dermatologist, and anything else that ends in -gist.. and trying every kind of anti-inflammatory and antibiotic.

about a month or so ago, we finally got a diagnosis!


we put our degrees in google to work, and researched like nobody's business, trying to figure out what the heck we were dealing with.

not the best idea when you've just been given a rare diagnosis. it kinda scares the heebeegeebees out of you!

scleroderma is a rare auto-immune disease where there is an over production of collagen in the tissues in the body.

what does that mean?
kyle's skin is becoming very thick and hard, which is immobilizing his joints. which stinks!

the downside with an upside?

it can get into all your organs, doing the same things to your heart, lungs, throat, etc. which really stinks!!

kyle has been through umpteen million tests (lots of needles involved. not kyle's fave), and it has been determined that it is not in any organs! PRAISE THE LORD!

the doctors are fairly certain that kyle has "limited scleroderma", which means it should stay in his skin, so we are praying daily, that is the case.

this is a "for the rest of his life" kinda thing, so there will be appointments from now on checking all those organs to make sure it hasn't spread.

so the treatment for scleroderma? well, that's the kicker. it's so rare, that people don't know how to treat it.

when we got the diagnosis, the doctor said, "you have scleroderma, and honestly, there's nothing really to do for it." awesome!

but, alas, we have found a way!

kyle is going through experimental treatments at southwestern medical school.

he is on several different medications, and he "tans" 3 times a week.
yes, you read that right, he tans. it's not a traditional tanning bed, it's got different kinds of lights, but he is getting tanner as we speak! kinda funny. the lights are hopefully going to be able to "break down" the collagen.

he has to go to dallas to tan at 7 am, three times a week, which is lame and tiring, but if it works, it will be totally worth it!

and praise the Lord, we are not going to dallas several times a week for chemo, or something equally as terrible.

we are so tired of doctor appointments (especially kyle, i just tag along), but truly trying to be thankful that the diagnosis is not any worse, even if it does stink. like a lot.

God has a way of opening our eyes, to show that we are not in control. nor the perfectly healthy little family like we "think" we should be.

it's been a tiring journey, but we do rest in the fact that God is sovereign, and will not give us more than we can bear.

so yeah, we're doing well, and still loving this life. curve balls and all.

and because no post is complete without a picture.. here's kyle and jillie bean at one of the many appointments. yes, she tagged along to many appointments, because i want to be there, too! all the doctors know her well =) and she actually behaves quite well there, which makes it a lot easier!

Friday, November 19, 2010

a buzzy little bee

cheesy, huh?

i'm coming out of my blogging funk, so i'm having to back track a little, which brings us to..


gasp! halloween!? yes, i actually said that and not "fall festivals". am i even still a Christian? =)

which brings us to our little bumblebAlign Centeree!

we thought this was a very fitting costume for her, because she is so BUSY!
(if i had a dollar for every time i heard someone say, "wow, she's really busy for her age!)

KILLER BEE!! (one of my favorite pictures!)

this is the huge bucket of candy at heidi and brent's house. we all gather there, hang out, and give candy. we think it's more fun to all be together, than all at our separate houses!

we may have passed out some slobbery pieces of candy! just maybe..

all the cousins (minus haylie, who was also a very cute bumblebee). aren't they all so cute!? we're so lucky to have kids who all adore eachother! i just love to watch them all play together. even with the age difference, the older kids are so sweet to the little ones, and they all have a blast!

i was dressed up as a nurse/myself, because i had to go to work later that evening. kyle dressed up as a rangers fan.

we went and trick or treated at gigi and doc's.

we took all the grandkids to trick or treat at my dad's fire station, and they got a call and had to leave while we were there. the kids thought this was way cooler! as they were climbing on the truck, dellie yelled, "is it a cat stuck in a tree!?!?" true story. that girl cracks me up.

here's a picture of all the grandkids together with my grandpa (my mom's dad).

one more picture of our little bumblebee. just to soak up her cuteness..

can you look at this and not smile? i think not.

Monday, November 15, 2010

7 months!

we have been in a bit of a blogging funk around the nelson house.

and by we, i mean me.

jillie bean boo bear is seven months old! which i believe is a little too old, but we'll move on! this is actually like 2 weeks late. maybe i should just do a 7 and 8 month post!

our sweet girl is still a very busy sweet girl. she is EVERYWHERE! and into EVERYTHING!

we love to watch her explore, and then intervene before she endangers her life. or eats a bug.

yes, she has eaten 2. TWO. bugs. bleh. probably my least favorite part of motherhood, so far!

she can wave now and it is so cute. she waves at everyone. the average joe may not notice she is waving because it is a little..erratic. but she is definitely waving, and she thinks she is big stuff!

yesterday she took several steps behind a walking toy. goodness gracious.

she is still a very good eater! she eats every 4 hours in the day. usually eats a fruit or vegetable once or twice a day. we're trying to be better out doing food twice a day, but she spits up so much after, that i dread doing it.

she is still a spitter. we recently started zantac, which has helped a ton, but the last couple of days have been spitty again. bleh.

{after this picture, she may have flipped over the edge. maybe. good thing there is a big pile of pillows on the other side of the chair. just sayin'..}

jillian may be one of the happiest babies i have ever been around! she is constantly "pumped about life!" she will just bust out laughing at nothing and it is so sweet!

i think she's going to have a little sense of humor. her facial expressions are to die for!

{this may be my favorite picture every taken of her!}

she's been sleeping pretty well lately. i think we are finally out of the "waking for no reason" phase from about a month ago. she usually sleeps from 9ish to about 6ish.

this is how she ended our 2 1/2 minute photoshoot. she never stops moving, so she offers lots of poses!