My photo
wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne

The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ

Friday, September 24, 2010

what a week.

i don't know how to describe the last 17 months of our life.

i don't know for sure how to describe the last week of our life.

but....deep breath.

for a week....we have been home.

for a week....ridge's hemoglobin has not just been stable, it has been GOOD.

for a week...ridge's diapers have ALL looked normal.

for a week....ridge has been able to crawl around and walk around (sort of) on the floor....because we are home. because my home is clean- for sure cleaner than the hospital.

for a week...sawyer has been able to play in his room, sleep in his bed, do school at our kitchen table, and wake us up every night bc he is scared in his room. and i wouldn't trade it for the world, because we are home.

this week, we went to the zoo. if we are still home next week, we will go again. it is free, thanks to gibby who buys the boys a zoo pass for Christmas every year...and i will not find other things to do when i can do something with my kids...because sometimes, i can't do things with my kids.

is this disease behind us? i don't know. i have cautious optimism. but God is good. and we have had "normal" for a week.

here's where ridge is at:

we had two check ups this week. at our GI check up, here are some things we discussed:
1. ridge now weighs 22.5 lbs. this is 10.2 kilos, approx. for months straight he weighed 8 kilos. his weight, for the first time, is finally on the growth chart (not that this matters, but still!)
2. ridge is 29.25 inches long. a few weeks ago, he was 28.75 inches long. he continues to grow.
3. ridge eats more than sawyer could even dream of eating....we didn't find this out at the dr, but i just thought of telling you that.
4. we were able to reduce the medicine ridge gets at 9 am and 9 pm to just the 9 am dose. this medicine is called carafate, and when we go back in a couple of months, i will ask to come off of that as well, hopefully. so now ridge gets one medicine at 9 am, one at 11 am, 4 at 5 pm, 1 at 11 pm, and 1 at 5 am.
5. ridge is currently on the highest dose of amicar allowed for his weight. this is the medicine he gets 4x a day, and it is what is majorly controlling his bleeding. with the high dose he is now on, we had to get a new bottle of it today. the bottle of it is huge. it was also incredibly expensive. and that was with our insurance covering about 85% of it. the full price on it...between 500-600 bucks. ridiculous. we are STILL, 10 months later, waiting for approval for some medicaid type secondary insurance. it is taking forever. everyone assures us ridge qualifies-- aside from the fact we fall in that dreaded "middle ground" of income-- we have been assured he qualifies bc of his medical need. that's great. but it would be even greater if we could get the ball rolling before we don't need the help anymore....but i'm rambling.
6. the doctor wants to scope ridge again sometime. i didn't say a whole lot in the appt about this, but brandon and i have collectively decided we don't like that idea. what's the point?
7. ridge's spleen measured small awhile back. he will go for an ultrasound in october to see if that problem is worse or better.
8. the GI doctor, although he isn't the expert on this, doesn't think we need to stress dose steroids anymore. this means when ridge is sick, we shouldn't have to do steroids. his thought is we only need that now for bleeding, and then only when the bleed doesnt' stop on it's own. i like that opinion, i just don't know if it's for sure the opinion the endocrinology team would have.

i think that covers our GI visit.

later in the week he had a pentamidine infusion on the hematology/oncology's that visit.
1. a dental student was working that day and he looked at ridge's 12 teeth and said they looked good. this was good news to me bc i thought one looked rotten.
2. the hematologist thought he looked so so so good. and she thought soon we'd be able to stop doing the pentamidine. this is an iv treatment to ward off pneumasistis pneumonia (medical friends, spell it right, bc i don't know what it's called really). this is a type of pneumonia that immuno suppressed kids are susceptible to, and it is very dangerous.

i think that's it for ridge.

this week sawyer and i made cornstarch clay for our craft project for school. it turned out stupid and awful. but we had fun.
sawyer is a great helper- he helps with ridge, loves on ridge, sorts laundry for me and can even fold towels. he also apologized to me this week of his own volition with zero prompting or prodding from me. i am very proud of him.
sawyer also went to children's choir at our church last sunday night. i am hoping we can go back this sunday. he was pretty stand off-ish and shy but i think that will get better. i stayed to help him out but it turned out great for me bc i got to visit with the two teachers and i say you can never have too many friends. i also got to see several lovely people from our church, some of whom i haven't seen in a while.

in other news....

we are starting cloth diapering. so far, i really like it. ridge poops quite a bit, like 3-5 times a day so that's not fun, but it isn't awful. and they are the cutest diapers you've ever seen (fuzzibunz!) they are so soft and wash up so nicely and the stains always come out. they are one size adjustable diapers, so if we ever have another baby, i can use them on him or her too! we haven't had to buy many diapers for ridge bc we are always in the hospital, but while cloth diapers ARE expensive, if you add it up, they really save a TON of money in the long haul bc I easily spent over $500 a year on disposable diapers-- for two years, and then at least half of that for another year with sawyer. so we're talking probably $1500-$2000 on disposables and pull ups in the first 4 years of sawyer's life. you could buy all the cloth diapers you need for less than $400. and that's going with the brand i chose, which isn't the cheapest one out there, but isn't the most expensive either. AND you can use them for more than one child, so that makes them even more economical. bdawg hasn't come around to it yet. but i like them.

since being a stay at home or stay at the hospital mom, i have become more passionate about those types of things. i have time now (not that i was w/o excuse before, bc i should've been just as responsible when i worked)...and do i really have time now anyway? no i'm still busy-- but anyway- i have time in my brain to be more earth friendly. while cloth diapering saves a lot of money, it is obviously better for the environment bc my kid's poop and pee isn't soaking into some landfill somewhere. i have lots of things like this to share, but for a reason i can't yet disclose, i will not say anymore.

I am reading Dr. Sear's "The Vaccine Book"-- it is so so good. Don't worry- it doesn't take a stance on "Vaccinate/Don't Vaccinate"-- it really is unbiased and just explains every vaccine your child receives in the first 5 or so years of life. It's easy to read and it isn't too expensive either ($9 online at walmart). I think anyone with kids who still have vaccines coming should read it...and anyone who's pregnant or a new mom should too. I wish I'd have known some of that stuff with Sawyer.

This is kind of big news, and I'm not sure if I am ready to share it anyway. But I will. Something you can be praying about for us-- I have been told, repeatedly, that I should write our, write a book. I have the blog. It's enough for me, I never had a desire to write a book. This is a great way to journal my feelings and I'm fine with it. But lately, I've really had an urging to write a book. I don't know if i WANT to, I just am really feeling compelled in that direction. I can't share a lot, bc I'm not the only one involved in this decision....but I think I have a good idea about the book. So please be praying for direction, clarity, provision, open doors, all of that. I don't want to move forward unless it is truly God's will.

i have so many things i want to share, but the boys and bdawg are home with dinner, so i will go for now! i want to leave you with a song my friend kelly shared with me....

and i'm heading to the photoblog to update it as well.


Anonymous said...

Hmmm, interesting that you are thinking of writing a book; someone from our church who keeps up with you guys through us just said last night that you should write a book. Coincidence? I don't think so! So if you think that is what God is nudging you to do, go for it. Meanwhile, I'm thrilled with your blog update on Ridge -- such good news. And that Sawyer is such a special boy, truly one of God's sweetest blessings to you. Love and prayers, Alethea

Bekah said...

I also CD. It is the best choice I ever made. :) Please let me know if you have any questions. :)

Twin-Daddy said...

This company is very nice, and very helpful.

alisha said...

thanks, all three of you, for your input/advice/support/encouragement :)