Wednesday, June 30, 2010

I can’t make this stuff up, folks…

Well, we’ve had another first…

Ok, so our central air went out.  No worries, we have window units and we’re staying perfectly comfortable.  But, because of this we have a large fan in the doorway of the boys’ room blowing the cool air throughout the rest of the house. It is perfectly safe...little fingers can't get in it or anything, but


Normally I keep Faith’s roughly 2.5 feet of tubing tucked neatly away in her pump belt, but apparently she was playing so much that it had wiggled itself free and was flappin’ in the breeze when Faith walked into the boys room.  She walked past the back of the fan and it sucked her tubing into the fan, sucked her TO the fan, cut the tubing in half and spit her out!

My big kids came running in the room where I was and they were FREAKING OUT... I couldn’t even understand what they were trying to explain to me that had just happened.  Thankfully, they had unplugged the fan and run to get me.  By the time I got to the boys room Faith was laughing.  She thought it was too fun.  The big kids didn't find it so funny though, they were scared to death. 

I can imagine it was a scary thing to see your baby sister get sucked into the fan...and the noise that must've made...

Everyone is fine though.

Just one more story for the book…


Friday, June 25, 2010

she’s TOO smart for MY own good…

I’m SO behind on my blogging…have a couple of little funny things to share…


So, a week or so ago when we had to be at the hospital for the water deprivation test Faith was still in the middle of her extreme thirst.  As the name suggests we had to deprive Faith of all fluids for the test so we were giving her a paci in place of her bottle.  At some point she drops her paci and Chuck picks it up, washes it off and sticks it back in her mouth.  She sucks the water off of it and drops it again.  Again, he picks it up, washes it off, and puts it back in her mouth.  She proceeds to suck the water off, drop it and ask her daddy to give it back to her.  About this time Chuck realizes…she’s doing this to get the water.  He picks the paci up this time and just holds it.  Faith starts fussing and pointing to the sink and telling her dad (in 16 mo old speak) to wash it off!  He tells her no, brushes it off and hands it to her.  She picks up the paci, kneels down, RUBS THE PACI ON THE FLOOR, stands back up, stretches her hand up to give the paci back to her daddy, and then adamantly points to the sink! Smart little toot!!  (WHAT ARE WE GOING TO DO WITH HER AS A TEENAGER???)



The other day I was changing Faith’s infusion set.  This consists of inserting a canulla under her skin (much like an IV only not in the vein). 


The needle for this is pretty long…


I get it inserted and lay the needle in my lap, safely away from the other 3 kids who are watching, and finish taping everything down and attaching the tubing.  Faith all of a sudden starts kicking like a mule and….


I guess I deserve that after all the poking I’ve done on her these past few months… ;)

Always somethin…


So, now Faith’s body has decided to develop an allergic type reaction to her insulin.

Yes, her insulin.

You know, that life saving stuff that she must have in order to SURVIVE!

I want to shake her little body and say, “Don’t you know you NEED this stuff? Don’t you know it’s good for you??  WHY are you rejecting it??”

Then, I think of how this is what we so often do with the gospel…we fight off the very thing that will save our lives.  It’s GOOD for us…why do we fight it?


When I put Faith to bed Monday night I noticed a little pink in her canulla (the tubing that is inserted under the skin).  I thought that was odd, but she otherwise seemed fine so I just made a mental note of it.  The next day I walked in her room after her afternoon nap and she had pulled her infusion set out of her leg and was scratching at the site.  She never ever touches her infusion set so I knew something was up.  Upon further inspection I found that she had this really angry looking red bump.  It was hard as a rock and painful to the touch.

I texted several of my type one mom friends and none of them had experienced this before.  Why Faith insists on pioneering all these oddities is beyond me.  I really wish she’d go easy on me, but why start now? 

Ugh. I was afraid it had become infected so I started trying to call Dr Casas.  We played phone tag and I didn’t get to talk to him until the next morning.  By then it was looking better and the swelling was starting to go down.  He said that as long as it was an isolated incident and was looking better then we’d just put some neosporin on it and watch her. 

Next morning, walk in Faith’s room and alas…pulled another infusion set out.  Again, lovely red bump.  Not as bad as the one before, but definitely not normal.  Ring ring, Dr Casas.  He asks us to come in so he can see it and we make our way to Tyler. 

We get there and he checks it out and says he thinks she is having a reaction to her Novolog insulin.  (??!!  Really now? Her insulin??!!)  He gives us some Apidra to try. 

I insert another infusion set in the office, fill the pump with Apidra, and head home to see if that corrects the problem. 

So far, so good. 

We’ve made it through one whole set cycle and no redness or swelling.  I’m glad this problem had a fairly easy fix, but it makes me a bit nervous.  What do we do if she reacts to this new insulin??  I’ve looked online and it seems this reaction to Novolog isn’t unheard of.  I guess that’s good news.  (If you’re trying REALLY hard to see the silver lining here…maybe if you squint? ;)


O give thanks unto the LORD, for he is good: for his mercy endureth for ever.  Psalm 107:1


I remember hearing this story about a Type 1 child in a third world country. 

Type One children in developing countries

The story goes that a group was taking a vial of insulin to this Type 1 child in a village in a country where insulin isn’t readily available.  The child was close to death and they were going to get there just in time.  When they arrived and were handing the vial to the family it was dropped and broke, spilling what could have saved their child’s life.  This is dramatic and tragic, but illustrates what so many families go through when insulin is just out of their reach.  Some families are forced to choose between food to feed and sustain their whole family or insulin to save that one type 1 child.  These children die without insulin.  I’m so very thankful I don’t have to make that choice.

I’m so thankful to live in a country where I have access to the technology and medicine to manage Faith’s disease well, but  I have a love/hate relationship with insulin.  I love that it’s available, but hate that Faith needs it.

Every time I change Faith’s infusion set I have to replace her insulin cartridge in her pump.  There’s always quite a bit of insulin left in it and it always makes me sad to waste it.  I think of those  that are watching their children die without it and how I’m just discarding it like it’s nothing.  I don’t know why, but one day it just hit me… This is what we often do with the life-saving gospel of Christ.  There are those dying without it and yet I go on living and wasting it instead of sharing it freely as if their very life depends on it.  But it does! So, why hasn’t that been making me as sad as pouring out that insulin?

Saturday, June 19, 2010

Who are all these kids and WHY are they calling me Mom??


So, I’m sitting here eating some strawberry shortcake and missing my husband so much I can barely breathe…and thinking about our precious babies.

Tonight I had to run to the store for laundry detergent.  Our washing machine decided to start working again for some reason (YEAH!!) and I hadn’t gotten around to making anymore laundry soap so we ran to Brookshire’s.  As the sackboy was helping me carry my bags to the car he said, “Wow, are these all yours?” (referring to my kids) This question always cracks me up.  I get it surprisingly often.  I only have 4…FOUR…kids! Not fourteen.  My last name is not Duggar. (though, those that know me know I’d go there in a heartbeat) Now, I realize that I don’t have four normal children and sometimes being around my four can feel like there are fourteen children around, but still this question always cracks me up.  I said, “Yep, they’re all mine.” He said, “Wow, really”?  “Yep, wouldn’t change a thing….though I could use a vacation!!” 

HAHAHAhaha…even now that makes me chuckle.  The kids were being really quiet and obedient at the time too…he’d probably have a heart attack and die if he hung out at our house for 10 minutes!!



JC is such a sweet boy.  He is my old soul.  The wisdom that comes out of his mouth astounds me sometimes.  Tonight we were driving home from the store and he said (with tears in his eyes),

“Momma, look at Faith.  She is just so pretty.  When I look at her it just makes me happy.  It makes me think about her story.  It’s a blessing we still have her.”

The best big brother in the whole world. He was playing his XBox and Faith wanted to watch so he put her in his lap and played...for about 20 minutes! She just sat there...and he'd tell her what he was doing as he was playing...SO precious.

So, at this point I myself am tearing up and thinking about what a sweet sweet boy he is…and in the very next breath he says,

“Momma, do you think you and daddy can trade and you can be gone all the time and daddy can be home?”

Little rat.




Grace’s favorite song is Casting Crowns East to West.  She walks around singing it all day.  She has one of those tracks that you use when you are gonna sing a special at church. (I’m sure they have a name, but I don’t know what it is… :) She plays it on repeat ALL THE TIME and sings with it.  She and Eli like to have mini concert performances for me, JC, and Faith all the time.  They grab their ‘tars (guitars in Eli speak) and go to town. 

Her favorite line from the song (or the one that gets stuck in her head the most) is ‘here I am Lord and I’m drowning, in your sea of forgetfulness’.  Well, Eli apparantly got it stuck in his head today too and has walked around all day saying “Lord drown me” over and over again.  HAHAHAHA! I think he may be missing the lyrics a bit here. ;) They are SO cute together.  T.R.O.U.B.L.E. waiting to happen!




Today Faith’s blood sugar has been through the roof…again.  We upped her basal rate…again.  But still, her bedtime bg was 577! I corrected and two hours later she was 367.  I’m so frustrated with it.  And exhausted.  She is totally worth EVERY sleepless minute, but checking her bg every two hours around the clock is EXHAUSTING.  I feel so bad for her too because she is SO fussy and miserable.  I wish I could figure out what is going on with her! 

Today was our day to change her infusion set.  I removed the old one, inserted a new one, and sent her on her way while I cleaned up the mess that causes.  A few minutes later I walk through the kitchen and there lies Faith’s pump…still attached to the infusion set…that I just put in her thigh…  I was promptly informed that Eli had been playing with Faith and ripped it out of her leg!  Ouch!  Faith didn’t seem to mind…she just left it laying and went on about playing.  UNTIL she realized this meant I was going to have to insert a new one.  She started running away from me screaming “no momma, no momma, no momma”. It about killed me.  As soon as we got the new one inserted she was totally fine, didn’t cry a bit, but boy did I hesitate for a minute!  I made sure it was on there good and had a good talk with Eli about being careful with Sis’ pump.  Poor baby felt so bad.  He ran over and kissed her on the head and told her he was “sowwy”. He is so precious with her.  The pictures below were taken in the hospital one of the times she was in there.  They hadn’t seen each other in days and when I put them in the cage (hospital crib) together this is what happened.  Ugh, how cute is that??














Well, it’s time for me to check Faith again and try to get an hour or two of sleep.  Praying for good numbers!  (Sounds like I’m playing the lottery..)  Good night!

Thursday, June 17, 2010

More Faith?

Right after Faith was diagnosed with Type 1 I had a (well meaning, I’m sure) lady come up to me and tell me that God had sent her to talk to me.  She told me that God didn’t want Faith to have Type 1 and I should reject the diagnosis.  She even had the audacity to lay hands on my baby and pray that Faith’s parents would catch a vision for how God would (not could, would) heal her if we had enough faith.  Forgive me, but I think she was used as a mouthpiece that day, but it wasn’t by God.

I know God could heal her.  It would be nothing for him to.  But, when I look at what God has done in Faith’s life already, and the people she has touched, I can’t help but feel (or KNOW) that this is his plan for her.  Her life and story are touching people in more ways than I could have ever imagined.  Do I like this plan? No.  Would I choose this path for my baby girl if it were my choice? No. I can’t (or won’t) believe that this is a punishment or a burden she is straddled with due to my lack of faith.  I’ll be the first person to tell you that I could use/need/desire more faith, but to imply that Faith’s living with diabetes is a direct result of my lack of it is ridiculous.  I can’t tell you how that thought makes me feel. 

We were never promised an easy life, but we were promised that He’d be there with us through it.  I for one can tell you that I have found this to be true.  There are so many ways that God has ministered to us during this and made himself known.  I have never felt him working so intimately in my life as I have through all of this.  It’s goose-bumply at times.

Today has been a rough day (there seems to be a pattern here lately), but it was made easier by the people that God has placed in our lives.  Most as a direct result of her diagnosis.  To know that there are people out there praying for us and seeing the direct result of those prayers INCREASES my faith more than my denying this diagnosis (and thus KILLING my daughter) ever could have. 

I think of Jake, who was diagnosed just about a year and a half ago.  Or Lydia. Or Jeremy. Or Logan. How different my experience (and countless others) would be if they had not developed Type 1.  As a result of their lives, and the faith and compassion of their families, I have had my Tyler Type 1 family to walk this diabetes road with me.  I really don’t know how I’d have gotten through these last 7 months without God placing them in my life.  You can’t tell me that God hasn’t orchestrated all of this.

I for one find God most often in the valley.  Why would that be if he didn’t intend to reveal himself to me there?  I’m no theologian or great student of the Bible, just a believer trying to figure this stuff out.  I don’t know why this is what’s on my heart today, but it is.

Anyway, when my husband reads this post he will probably tell me that I sounded a bit rude.  He’s always telling me that. :)  If the lady that said those things to me almost 7 months ago happens to read this, I hope you will think long and hard about this.  I’m sure you meant it in love, but it cut deep.  I have no intention of calling you out and sharing your name with anyone who asks.  I’m just sharing the introspection that your words to me caused. 


This blog thing is funny.  It feels like I’m just writing my thoughts down in a private setting to sort them out for myself.  The reality is that anyone can read them.  That leaves me feeling vulnerable, but something I feel called to do.  I hope that my ranting does some good some where for some one and please know that this post isn’t meant to hurt anyone.


Love yall.

My poor kiddos…

Ever feel like your life is one big science experiment and God just shaped your petri dish like a house?

I do.


Got up late this morning.  Kids had VBS at 9 this morning and I didn’t get up until 8:24. 


BUT, I managed to get them ready and out the door in time to be able to slide in to the church parking lot RIGHT on time.  (Thank God we’d done baths the night before.)

Walk outside and the horse that should be in the pasture behind our house is standing in the yard in front of our house.  UGH!  He had pushed the fence over a bit and jumped it.  The other two were going nuts trying to figure out how to join him in his new found freedom.  I catch him and put him in the backyard temporarily so I can get the kids to VBS.  Get home and he’s pushed the fence (this is all chain link, mind you) over and jumped it to get back into the pasture he originally jumped out of!!  I walk over to him and he’s happily munchin on grass and looking at me like “what?”.  I’m going to shoot him.

Ok, so I’m not really going to shoot him…but for a second there I did fantasize about it… ;)


I still couldn’t shake that nagging feeling that something is just not right with Faith.  I had to increase her insulin AGAIN today.  Finally got her blood sugar down to her target at around 430 this afternoon.  I was so worried she was going to crash tonight.  She started to dip down in the 100’s and I was bracing for a low.  But, it didn’t come.  I don’t know what would bother me more at this point, the low I’m expecting after giving her all this extra insulin OR the fact that she’s not low after giving her all this extra insulin!

I emailed Dr C today and asked if he thought we might be overlooking something.  I trust his judgment fully, but nobody is perfect.  Plus, the symptoms he got to witness at the hospital didn’t match what she’s been doing at home for the past week.  I expressed to him that I just had alot of anxiety since leaving the hospital yesterday.  Within 20 minutes of sending that email he’d responded saying he had discussed it with our regular pediatrician and she wants to see us in the morning.  I appreciated his quick response.  It may be nothing.  I’m probably just paranoid, but I just don’t have peace about it yet.


My poor kiddos.  I feel like there are times when I can’t think or talk about anything but Faith’s blood sugar, or carbohydrates, or insulin.  And managing this disease is stressful and doesn’t always bring out the most patient gracious side of mommy.  Some days I don’t know how I can keep doing this, and of course don’t know how I can NOT keep doing this.  It’s just so overwhelming and all consuming at times.  Thankfully the kids are so good about all of this.  There hasn’t been any jealousy among them from the fact that Faith gets so much attention.  Chuck and I have tried really hard to prevent jealousy.  We’ve talked to them about it and tried to make time for each of them.  They seem to somehow understand that she just needs a little extra attention right now.  I’m so proud of them and so humbled, but I need to do better.  They don’t deserve the snippy, short-tempered, stressed out mommy that they end up with most days.  Gonna have to pray and work harder on that.

So, tonight I’m clearing the table after supper and I hear the horses making a commotion and think to myself “…ugh…bet Zipper is out again”.  About this time I hear the kids yelling, “mommy, someone is here!”  Go to the door and it’s one of my neighbors that I’ve yet to meet. (Well until he introduced himself on my porch at that moment) “Ma’am, do you have a big sorrel horse?”

Grr, he’s out again. 

I go to the barn and get a bucket of feed and a halter.  As I’m walking back I hear cars slowing down and honking. Zipper is standing in the middle of the major highway that we live on! Praise God no one hit him.  That would have been disastrous.  I call him up and put the halter on him.  Thank the neighbors that notified me he was out.  Met the other neighbors that pulled up to make sure he was in fact my horse and not one of the other neighbors’. And put him IN A STALL.  He will be living in the barn until Chuck gets home to fortify the fences.

As I’m doing all this I’m thinking to myself, “What is God trying to teach me? And WHY am I such a slow learner??”  If I didn’t have bad luck these past few months I’d have none at all!  If he’s trying to teach me to rely on him, I’m trying to get that.  If he’s trying to show me who my real friends are, I’m starting to get that too.  If he’s trying to show me that he can use those around me to bless me and meet my needs…and how to accept those blessings… I’m sure starting to get that one as well.  As much hardship and heartache we’ve endured these past few months we’ve also received amazing blessings from those around us.  It’s been incredible and come from the most unexpected places!  We are truly thankful for that.  BUT, I gotta tell ya, sometimes I wish I could get the cliffs notes version of this life and the lessons He’s trying to teach me. 

I often say I wish he’d write it on the wall in pink crayon...  Pink crayon, because in my mind that would make a hand writing on the wall a little less creepy and intimidating. 

So, until he sends me the cliffs notes version, and I get life all figured out, I guess I’ll keep writing down what He’s teaching me…or what I’m failing miserably to learn…and  keep praying that somehow my poor kiddos manage to escape all of this relatively unscathed.

Wednesday, June 16, 2010



Answers. Even though DI is not the answer we wanted, we were thankful to have answers.  But, that was yesterday.  Today we learned that she doesn’t have DI after all.  That should leave me so relieved…but I’m not.  I can’t shake the feeling that we are missing something.  Faith has had so many odd symptoms this week and so many abnormal lab results.  Something is not right, but what? 


This week she has been drinking and wetting more than (anywhere near) normal.  She’s had good blood sugars, but large ketones.  HIGH blood sugars and no ketones.  For the past 48 hours I have increased her basal rate by a scary amount and struggled to get her bg below 300.  (It’s only happened about 3 times in 48 hours)  She has been sweating profusely.  Getting almost panicky when her bottle is empty, and even eating more than normal at times.  Her pee has NO smell and almost no color at all and she has dark circles under her eyes.  Some of these things probably wouldn’t even be noticeable to anyone else, but I notice them.

Right now the most unsettling of all the symptoms is the sick feeling in the pit of my stomach.  I just can’t shake it. 

But, why?  Is it the Holy Spirit or my paranoia?


The other feeling I can’t shake is guilt.  I have a friend that is SO gracefully living the nightmare we have been praying about and dreading this week.  Her daughter was born with DI and diagnosed with Type 1 at 2 yrs old.  I can’t help but feel so guilty and sad that we got to dodge that bullet and she didn’t.  I know it is all part of God’s plan.  I know that.  But, it is still hard to understand and live with.


Tonight Grace came in my room and said, “Momma, I’ve been real worried about Faith this week.  I didn’t like her not being in her bed last night.  I kept getting up and looking over in her crib hoping she would be there…”

(Pause.  Obviously has been pondering something and wants to ask, but not sure how.)

“Momma…how long is Faith going to live?”


“Well, baby, until God calls her home.  Same as the rest of us.”


Type 1 is not a death sentence.  You can have this disease and manage it well and go on to live a long happy (different and hard, but happy) life.  BUT, it definitely can get scary and especially at this age..and it causes all kinds of emotions.  I don’t mean to sound like we dwell on death or even the negative aspects of this disease.  We really try to go on living our normal lives in spite of it, but there’s no getting away from it and some days it just gets you down.  I just want to share honestly what it’s like to live with diabetes and honestly, some days, it’s hard to ignore the what-if’s.


I read this somewhere and have really been repeating it to myself today…  He is who He was yesterday.


and He will be tomorrow…

Monday, June 14, 2010

Even when the sky is falling…

Today has been an emotional day.  Chuck and I visited with our friends at their church.  Both their daughters accepted Christ this week at VBS and today was the first time I’d gotten to see them and talk to them about it.  I loved hearing those precious girls tell me that they had “Jesus in their hearts” now!  A lady at the church stood up to sing a special.  She chose “That’s what Faith can do”. I heard the first note of the song and I lost it.  Listen to the words.  It’s the song we chose for Faith’s video and the song Children’s Miracle Network chose for Faith’s video also.  It was just too much for me this morning after the week we’ve had and they day we have ahead of us tomorrow.



This morning Faith drank quite a bit, but mid day it seemed to have slowed some.  I started to think…hmm, maybe it was a fluke thing, maybe I imagined it… then I, how do you imagine your 16 month old chugging 100 oz of water in a day and having diapers so wet that you have to change YOUR OWN clothes? I did start to think, though that maybe it had passed, but tonight she’s back to soaking everything and has added profuse sweating to the mix.  I had to run to Robert’s house to wash a load of clothes because our washer has decided to stop working…ugh…and when I got back Chuck and I checked Faith.  It’d only been 2 hours since we’d changed her diaper and she was soaked…her clothes, sheets, everything.  I started to just feel really anxious and Grace witnessed us having to change all her bedding and everything and picked up on my worry.  She asked if we could pray together and JC heard us and came in to join us.  So sweet, he just walked in and put his arms around us while we prayed for peace.  I love my kids.  They are precious.

Later I grabbed my Bible and plopped up on my bed to read a bit and try to calm my nerves.  I’m not one to play Bible roulette, and I had every intention of opening to a certain passage and begin reading, but when I looked down at my Bible it was open to Philippians and this was highlighted on the page.  Rejoice in the Lord always.  I will say it again: Rejoice! Let your gentleness be evident to all.  The Lord is nearDo not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts  and your minds in Christ Jesus.  Philippians 4:4-7  

I think that’ll do…


I’m gonna go read this to Grace and go to bed.  Love yall.

Friday, June 11, 2010

Diabetes Insipidus

I’ve renamed this post a dozen times.  It started out with a light hearted name because it started out as a light hearted day.  It’s since gone downhill.  I’ll start the post with the fun stuff.  Then I’ll get to the other reality that exists in this house…


I’ve got to remember to keep my camera at the ready.  Bear with me, I’m new at this blogging stuff.  This morning the kids and I were supposed to take our annual trip to Blueberry Hills Farms.  We go every year with Robert and her kiddos and then go home and make blueberry pancakes with our bounty.  This morning it was storming. So we didn’t get to go today. 

The kids decided they wanted popcorn, but I only had one of those easy peasy microwave bags.  One is NEVER enough in this house, SO, I decided I would pop some the old fashioned way in a pot.  All went well until I realized that maybe…just maybe…I had gotten a little over ambitious with the amount of popcorn I poured into the pot.  My first clue was when the popcorn started to lift the heavy glass lid off the pot!  I was certain I’d poured too much however, when it started to overflow all over the stove, counter, and into the floor!  I so wish I had a picture!  The kids started laughing and catching it as it was falling from the pan like it was manna from heaven.  Hilarious!

Later I was in the bathroom blow drying my hair when Grace came in and gave me a hug. 

Grace: “Thank you for letting us have a great day even though we didn’t go blueberry picking.”

Me: “You’re welcome, baby.”

Grace: “Have we been good today?”

Me: “Yes ma’am, yall sure have.”

Grace: “What do you say, momma?”

Me: “What do you mean, what do I say?”

Grace: “Say Thank you, momma.”

Me: “Thank you, Grace.”

Grace: “You’re welcome, momma.  We thought we’d surprise you today.”

Lol. That child.


Today Faith has had an unquenchable thirst.  Now, looking back, it’s been building for days.  I dismissed it as the heat and such the past couple days, but today there was no mistaking it.  This morning I poured her 8 oz of water.  I handed it to her and poured the other kids some drinks.  By the time I got theirs poured she had downed hers and was asking for more.  Since then she has taken @ 100 oz the best we can figure.  Of course some of that has been spilled, but that’s abnormal any way you slice it.  She has soaked her diaper and every outfit she’s had on today.  Her blood sugar has been right on target and she has no symptoms of being sick, but because of her thirst I decided to check her ketones. Large. Ugh. Ring Ring, Dr Casas.  Thank God for him.  I have to take Faith in tomorrow morning to be tested for Diabetes Insipidus.  This is a totally different type of diabetes that she may have in addition to Type 1.  My heart is very heavy tonight.  Say an extra prayer for my baby girl today if you think about it.

Went out to tuck the chickens in and two of them were missing.  For some reason they’d decided to roost on Lulu’s (the mini schnauzer) outside kennel.  Took them to their own beds and realized…hmm, it’s awful quiet…where is my Lulu…gone. Praying she’s back home in the morning.  Chuck and I both drove up and down the road and called and called for her. No Lulu.  Man, I’m ready for this day to be over.


The Lord is good, a refuge in times of trouble.  He cares for those who trust in him. 

Nahum 1:7

Wednesday, June 9, 2010

Mixed emotions

Today was just one of those days. 

It rained, which was GREAT! But, that meant my kids were stuck  inside ALL day which is NOT great.

Got a call that my friend’s little girl accepted Christ tonight which is INCREDIBLE! But, I’m so bummed that we weren’t there to see it. (More about this in a minute)

Changed Faith’s infusion set today.  For the first time she didn’t wince, whimper or grimace. At all.  She just sat there and let me do what I needed to do.  When I was done, JC (my 7 yr old) said, “Wow, momma.  She didn’t make a peep!” Now, you might think this is a great thing.  Truth be told, it is. BUT, it filled me with so much emotion, and not all good.  For some reason I was overcome with deep sadness.  It makes no sense, really.  It just made me realize (again) that this is something that Faith is just going to have to learn to live with.  Like not crying over it is admitting defeat somehow.  Like fighting me when I’m inserting a new infusion set is a slap in diabetes’ face.  I know fighting it won’t help anything and it’s best for her to learn to just roll with it.  My head knows this. My momma’s heart wants to scream. Maybe I’m offended that my 16 mo old is handling this more graciously than I am.  I’m supposed to be the one holding it together for her, right?  I gotta tell ya, most days I feel like she’s the rock in this situation.  I keep it together on the outside, but inside I just wanna lay in the floor and throw a fit!  Then I look at that precious Faith, and hear her say “Thank you”, and smile and play… On one hand I feel like I should scream and warn her…I feel like she has no idea what the rest of her life is going to be like with this damn disease.  Like she’s running out in front of a train and I can’t get her to stop.  On the other hand, I thank God that he has so blessed her and I think to myself that I wish I had the strength and grace  that she has. 

Tonight when my kids and I all piled up in the boys’ room to pray my Eli (2 yr old) went first.  We have never been a family that did those little sing song prayers with our kids.  We just pray in front of them and allow (and encourage) them to pray in their own words when they’re ready.  It always surprises us how early they are ready and how deep their prayers can be.  Tonight was the first time that my little Eli branched out and really prayed from his heart beyond the thank you for my mom and dad stuff.  He prayed and thanked God for his daddy having “a good job that was blessings” and “Keep daddy safe at work and send him blessings”.  It was too cute. 

JC’s prayers are always filled with wisdom.  He thinks of and prays things that I am ashamed to say I might overlook if he didn’t remind me during his prayer time and in the most honest ways.  Listening to him pray is like sitting and listening to a conversation between friends.  I love that.  I can’t wait to see what God has planned for my little man.  Tonight he prayed for Dr Casas and his family.  Nothing new about that, really, we always thank God for him. Except that JC prayed for his children specifically.  That just really struck me.

Grace. Oh Grace. This child wears me out and challenges me and humbles me and blesses me in the most extreme ways.  Nothing is middle of the road with her.  If I’m honest with you I’ll tell you that some days I struggle to see this as a blessing.  Then she says something that knocks me to the floor.  Tonight she prayed for the bully girl at her school.  If you’ve followed me on facebook you’ve heard me mention her before.  This little girl has tortured Grace all year, yet Grace just loves and prays on.  Amazing.  She doesn’t pray little ‘make her be nice’ prayers either.  It’s breaking down strongholds kind of stuff.  Always floors me. Then she started to pray for Faith…  and apparently I’m not the only one that was filled with sadness over Faith’s diabetes today.  It was all I could do to keep it together tonight when she thanked God that Faith was still with us and prayed that God would allow Faith to grow up a little longer so she could see what it was like to be a big kid. Man oh man.

Then as we’re sitting there talking to Daddy on the phone and telling him good night we get the text that our friend, little 7 yr old Aly Belle, had accepted Christ.  You’d have thought we’d gotten word that we won the lottery or something! (Aly did!) We were whoopin and hollerin and prayin.  After I walked out of the boys room and headed to tuck the girls in I heard JC say to Eli, “Hey, you wanna pray and thank God that Aly got saved?” and Eli exclaimed “Yeah!” So I stood just outside their door and listened to the most precious little boys pray the most precious prayer thanking God for saving their little friend Aly’s life.  I was so moved and so thankful. Kids get more about this stuff then we usually give them credit for. 

Then the house got quiet and we all started missing daddy. And crying.  And needing sips of water. And needing to go potty. And Faith’s pump started going off. 

Just one of those days…

Tuesday, June 8, 2010

CMN 2010 Celebration Telethon

Type 1 Diabetes sucks. Sorry, but it does. BUT, it has brought with it several fun experiences so far.  This was, by far, one of the kids’ favorites.

We were asked back in January if we would be interested in sharing Faith’s story through Children’s Miracle Network.  We were excited to do so.  Since that time we have been filmed at the hospital, Dr. Casas’ office, and in our home.  This footage (hours of it, lol, we know I can’t be brief) was condensed into a 3 minute video and then we got to be interviewed on the local news. 

We all truly enjoyed this experience.  When we left after the first day of the telethon our big kids got out in the parking lot and exclaimed (almost in unison) “Momma, I’m a STAR!” Well, kids, I don’t know that 10 minutes on the local news puts you at star status, but… I think it’s pretty close! ;)

Below are clips from the telethon…




Monday, June 7, 2010

Getting started is always the hardest part…

Getting started is always the hardest for me (for most, right?), no matter what it is.  Writing, cleaning, cooking, just taking that first step seems so daunting and then once I do I'm off & running.  SO, with that said, I've been thinking of, planning to, brainstorming, even opening blogger to start my blog and just never started typing.  BUT, here I go...

Faith's story touches people in ways that I still don't fully understand or comprehend.  I am resolving to not let my lack of discipline keep it from being fully told.  SO, I'm going to try to make it a point to blog our highs & lows (pun fully intended ;) of managing this disease & my crazy brood of four children, four roosters (down from 10!), 3 hens, 1 dog, & 3 horses.

We'll cry, we'll laugh, I'll know, pretty much a normal day...

If you've never read Faith's story, catch up now...



"Before Faith learned to walk she learned to sit through 8-18 finger pokes a day.

She learned to be brave through her insulin shots before she could even say the word "shot".

Most days when I give her an injection she says "tank tu" when I'm done...God love her.

Type 1 Diabetes is a war and if we don't get up and fight it every day, we'll lose."

— Sarah Wilson, Faith's mom

This is Faith's story.

Sunday, Nov. 15, 2009, Faith, our 9-month-old daughter, woke us up at about 4:45 a.m. fussing.  I went to get her out of bed and she was soaked.  I just thought it was a leaky diaper; so, I cleaned her up, got her a bottle, and got her back to sleep.

I went to bed and she woke me up again at about 7:45.  This time she had spit up her bottle, but she didn't look sick or anything, didn't have fever and wasn't particularly fussy, so I thought maybe her bottle hadn't settled well.  I gave her another bath and set about getting everyone ready for church.  We put her in the church nursery as usual, but when I picked her up, the workers said she had been very fussy.  She didn't look very good either and she felt warm.

The older kids had stayed the night with my husband's parents, so after church, we had to drive to pick them up.  Before we could get home, Faith had started throwing up everywhere.  I mean, everywhere.  It was on the back glass, on all the kids, even in the floorboard behind her.  We pulled over and I cleaned her up as best I could.  We hurried home.  She threw up a couple more times by the time we got there.  We couldn't get her to hold down anything.  I called the nurse on call and talked to her about it.  She told me to give her fluids in a medicine dropper.  I did that, but Faith couldn't even hold that down.  She was running a 101.4 fever.  I was very concerned

Chuck, my husband, took the older 3 to church that night. I took Faith to the ER.  In the ER they concluded she had the H1N1 flu and an ear infection.  They sent us home with Tamiflu, antibiotics and Zofran for nausea.  We went home.  She seemed a little better Monday and slept most of the day.  Tuesday morning she seemed OK, but the more the day went on, the more concerned I became.

I couldn't tell you exactly what it was at first that made me think she was worse.  I just felt uneasy.  Sometime around lunch time, she started throwing up again (but only once), which concerned me.  I started thinking maybe I needed to call the doctor.  She started breathing heavy, but I kept reasoning -- she has the flu, of course she's going to look sick.

I battled with myself over whether or not to call the doctor for a couple of hours.  It seems we are at the doctor every other day.  I kept telling myself that they would think I am crazy if I called them and said, "Um my baby that has the flu, well, she looks sick."  I called and talked to the nurse (the first of many things God worked out that day, because normally you have to leave a message and wait for a call back…generally after hours).  The nurse told me it wasn't a bad idea to bring her in for a recheck so I picked the kids up from school a bit early and headed to Tyler.  Thankfully, my mom and sister were in Tyler, so I asked them to meet me at the doctor's office to pick up the older 3 kiddos.  By the time we got there, I was frantic.

When I got into the doctor's office, our pediatrician wasn't there, so I saw her nurse practitioner, Shana.  The moment she walked into the room she yelled for the nurse to bring a pulse ox (to measure oxygen in the blood and stuff.) and said Faith just didn't look good.  Faith was this very noticeable, very scary gray color and was breathing rapidly like she'd run a marathon.  However, her oxygen rate was perfect and her lungs sounded perfectly clear.  SO, Shana could easily have said "she's sick with the flu, of course she's going to look bad, but her lungs are clear and oxygen is fine so go home." THANK GOD SHE DIDN'T!

She told me to go straight to the hospital.  That if I promised to go straight there, then she would not call the ambulance (where the heck else would I go?).  She handed me papers and sent me out the door.  She told me to go straight up to the pediatric floor and not to stop at admissions.

When I got to the hospital, the nurse met me in the hallway.  By this time, I'm crying and scared to death.  Now, this is not my first rodeo...I have four children.  I've been through the flu and hospital visits NUMEROUS TIMES, but something just felt WAY different about this time.  I was terrified...and alone. I don't usually cry, but I just couldn't contain myself that day.

They walked us to our room and the first thing I saw sitting in the windowsill was the most beautiful sight I may have ever seen -- a pumpkin decorated as Horton from Dr Seuss' Horton Hears a Who.  The reason this is beautiful to me is that one of my very close friends works at the hospital and had decorated that pumpkin.  There it was in this room.  I don't know why it was so comforting to me, but it was.  It made me laugh.  It sort of snapped me out of it.  This was so totally God working to comfort me. When I texted my friend Nicole, who decorated it, I wrote, "I love you, wanna know why?" as the caption and sent her a picture of the pumpkin. Almost immediately, my phone started ringing, which I thought was weird because we usually just text and she was at work, but I answered, and Nicole asked me where I had gotten that picture.  I told her it was in Faith's room and she told me that they'd been looking for that pumpkin to throw away and hadn't been able to find it!  Keep in mind this pumpkin had been at the hospital for more than a month!  They had decorated them weeks before Halloween and this was November 17th!  It was perfectly intact and not rotting at all.  This may seem like a silly insignificant thing, but it wasn't to me.  It was just what I needed at that moment to comfort me and lighten the mood.  I didn't feel alone somehow because this pumpkin, that my friend had decorated, was in the room waiting on me.

They whisked us off to another room where they attempted to get an IV started and couldn't.  So, they tried to catheterize Faith, but for some reason it didn't work.  She ended up peeing all over three nurses -- their faces, their scrubs – but, thankfully, one of them had the presence of mind to grab a little vial and catch some of it.  They caught the tiniest amount and decided to send it to the lab to see if they could do anything with it.  I can't stress to you enough how important this was!  This turned out to be another miracle, but I'll get to more about that later.

So they're trying to start an IV because Faith is severely dehydrated at this point.  They try for 50 minutes and can't get one started.  I finally said, "Ok, enough.  Get someone else."  It was time for a shift change, so they sent us back to our room (where Horton was waiting, LOL).  When the next set of nurses were on, they took us back and tried to start the IV again, for an hour.

This time I requested they bring a NICU nurse or the Flight for Life team in to try.  The Flight team came, and tried.  They couldn't get it either!  Poor baby Faith was SO upset and screaming her head off, so we kept giving her Pedialyte bottles and pacifiers dipped in SUGAR water to somehow console her.  (OMG!  Now that we know she has diabetes, I shudder every time I think about this.)  By this time, Faith had downed around 30 ounces of Pedialyte (which is now a red flag, but wasn't at the time.  We just thought she was making up for lost time).  They sent us back to our room and said they were going to call the doctor and see if they'd call off the IV since she'd drunk so much Pedialyte and was keeping it down.

So, remember the nurse having the presence of mind to grab a vial and catch the urine that was going everywhere?  Praise God for her!  I hope she realizes that God used her that day.  (I have since told her...)  That teensy bit of urine is how we ended up finding out that Faith has diabetes.

By this time, Chuck is with me at the hospital.  The nurse came in and says they've gotten the urine results and they don't look good.  She said Faith's glucose levels were in the thousands and her ketones were above 150.  This meant absolutely nothing to me at the time, so I asked, "Ok, what is a good ketone number?" and she said "Um, 0..."  (For those of you that don't know, her glucose levels should be between 80 and 120!)  I still was clueless what this all meant, so I asked her, and she said, "Well, if the test results are correct, it means diabetes.  I don't want to concern you just yet, but we definitely need to get an IV started and run more tests.  We'll go get the room ready and be back to get you in just a few minutes."  Oddly, this didn't concern me.  I just knew she had to be wrong.  I turned to Chuck when she left the room and said, "No, that can't be right.  She just has the flu.  Call your mom and have her get online and research what could cause these glucose and ketones levels BESIDES diabetes.  I just know it's not diabetes!"

Now, Faith hadn't been sleeping well since she'd gotten sick, so I was exhausted.  Chuck and I decided to take shifts.  I took the first shift sleeping so that I could be up with her later, since Chuck had to go to work the next day.  So, when they came to get her for her IV he took her, and I stayed behind to rest.  I quickly fell asleep, and apparently I died, because this was all happening around 8 p.m. and the nurse came to wake me up at around 2 a.m.!  I looked up and realized Chuck and Faith weren't in the room and was immediately brought back to reality.  I looked at her (Nurse Barbara...I'll never forget their names.)  with a look that must've expressed exactly what I was thinking and feeling because she just looked at me with this sad expression and nodded saying, "Yes.  Come with me.  It's not good and we moved her to a bigger room."  My mind was racing…Is she alive?  Why did they let me sleep so long?  Has it taken them this long to get her IV started?  I just remember being so afraid and confused.  That walk down the hall took SO long.

I walk into this dimly lit room at least twice the size of the one we'd been in and find my baby is laying in a hospital bed (the "cage" as we affectionately call it) with an IV in her head and one in her hand.  My husband is crying. There is a doctor I've never seen before.  My heart sank.  I was suddenly so angry at Chuck.  "Why didn't you wake me?" is all I remember saying before Dr. Casas looked me in the eyes and told me "Faith is very sick.  She has Type 1 Diabetes and is in severe Diabetic Ketoacidosis."

I was so shocked and confused.  First of all, I didn't know what that meant.  I knew of diabetes, but only Type 2, which I associated with old people.  Trust me, Type 1 is different -- This Ain't Your Grandma's Diabetes!

This next part is such a blur to me.  When I replay it in my mind, it is like one of those dream sequences in movies that jump around and have that haze around them.  I remember putting my hand over my mouth and apologizing to Dr. Casas for crying and I remember him telling me that I could hit him if I needed to.  He told us that she was on an IV drip to bring her sugars down and clear the ketones.  I remember that as soon as he left the room, all I could do was "yell" (quietly) at Chuck for not waking me up...this was irrational, but I was in shock.  He told me that he knew I was exhausted and thought it better to let me rest until they knew something for sure.  He said he knew I must have been tired, because when Dr. Rogers, the doctor on call that night, had come in the room to tell us they were fairly certain that she had diabetes and that he had called Dr. Casas in, I just slept right through it.  I remember calling my good friend, Kristi, to tell her...and I distinctly remember not worrying that I would wake her.  That is a sign of a true friend.  I just knew that she would get up and take my call.

Also, I remember crying and crying and searching my brain for what I did to cause this.  I was just sure that some negligence on my part was to blame.  (I've since learned that there was nothing I could have done to prevent this from happening. Type 1 Diabetes is a result of genetic factors already in place. Some virus or unknown environmental factor triggers the onset of the disease.) Dr Casas gave us a few moments and came back in to tell us that he was staying at the hospital with us that night (God Bless that man!!).  He said that they would be in every hour to check her sugars and adjust her insulin.  He told us that she was very, very sick, but that he thought she would be OK now that she was on the insulin.  He told us that in a few more hours she would have likely died…Even now that makes me sick to my stomach.  Had I continued to dismiss that intuition--that whisper from the Holy Spirit-- that something was wrong, I'd have likely found her dead in her bed the next day.  Wow!  Moms, LISTEN to that still small voice!

I remember that after we calmed down a bit, I walked out into the hallway and asked the nurse to wake me every hour when she checked Faith to tell me what her numbers were.  I also remember that she didn't have to wake me once.  A few minutes later, I realized that Horton wasn't with us, so I walked back out into the hall, and there was a different nurse standing there.  I looked at her and said, "I need Horton.  Can I go get Horton?"  This makes me laugh to this day.  This woman probably thought I had snapped...LOL! She just looked at me with this puzzled expression on her face and said, "Um, what?"  I was too drained to really see the humor in this until the next day, so I just flatly replied, "The pumpkin that was in my room, I want it."  She said, "Um, OK," and led me down the hall to our previous room.  I tried to explain why it was important to me, but I'm sure I was making no sense. She didn't seem to get it.  She just looked at me as if to say, "OK, crazy lady, go back to your room."  So, I did and I lugged the pumpkin elephant sign from God back with me.

The next morning, Dr. Casas asked me if I felt up to visitors.  Let me interject here that 1. This is an illustration of what a great doctor he is.  He was concerned about us emotionally, as well as Faith, physically.  He really made us feel like he cared.  He referred to her as Faith every single time, even though her first name is Elizabeth and that's what shows up on her medical records most of the time, and remembered our other children's names.  We really thank God for bringing him into our lives.  2. This next part is one of a million miracles that God performed that week, and one of the many reasons I know He has a plan in this.  Dr. Casas told me that he was looking over his schedule for that day and saw that one of his appointments was a 19 -year-old boy that was diagnosed with Type 1 at 16 months old.  Faith was diagnosed at 9 months old.

Being diagnosed at such a young age is very, very rare, and presents more challenges than in older children, so he thought it would be good for me to meet someone who had been down the road that I was now on.  He also told me that this young man's mom and some other ladies were starting a Type 1 foundation, and he thought they'd like to reach out to me.  The very fact that they were scheduled to come in that day was a miracle.  They had been scheduled to come in the previous week, but had to reschedule.

A few hours later in walked one of the many angels I met that week.  Susie and her son, Jeremy, walked in to my life and they were definitely a Godsend!  Seeing Jeremy was huge for me.  I really had no idea what a Type 1 child looked like.  To see that he was a great looking, articulate kid who, if you ran into him on the street, you would never know had fought this battle all his life was SO encouraging to me!  ESPECIALLY at a time when my baby girl was laying in a hospital bed unable to even lift her head.

Susie stayed with me for a bit, and we talked and cried and prayed.  She also told me that Dr. Rogers "just so happened" to be the same doctor on call the night Jeremy was diagnosed 18 years earlier!  It gave me chills to learn how God had orchestrated all this.  I don't know if she'll ever know what her visit meant to me, but I love Susie like I've known her my whole life.

Later in the morning Dr. Steeger, our pediatrician, came in just as shocked as we were that Faith had been diagnosed with this disease at such a young age. She was so supportive. I was so afraid and so down on myself. I felt like I had done something to cause this to happen to Faith, and like I was too much of a flake to handle this. I have to be one of the most disorganized, forgetful people on the planet. I just couldn't see how I was going to be able to manage such a time and energy intensive disease. Some days I still don't, and every fear that I had about me forgetting or losing something has happened at least once since we've been home, but we've recovered, and for the most part, have managed to stay on top of everything. When I expressed my fears to her, she was so encouraging. She reiterated that my bringing Faith in, and Shana sending us to the hospital, had truly saved Faith's life. Her support during this difficult and terrifying time meant the world to me. Shana came to visit later, she said she couldn't believe it when she'd heard the news. We hugged and cried for a bit. How do you thank someone who saved your baby's life? I'm still trying to figure that one out.

My dad, Preacher, and sister came to see me.  Dad ended up staying most of the day.  I was glad, because I didn't want to be alone.  Chuck had gotten up that morning and gone to work.  That seems so weird now, but I think we were just in shock.  When you don't know what to do, you do what you know, I guess.  The rest of the day was fairly uneventful

The next day another angel walked into our room.  Margie and her son, Jake, (another Type 1 family and executive director of Tyler Type One) came to visit and encourage us.  They brought us a Blessing Basket from Tyler Type One. It contained good snacks and other survival items that we would need to get through the next few weeks. It proved to be invaluable, as I would have never thought to buy the glucose gel that they included, but ended up needing several times.  Again, seeing Jake and how bright and vibrant he was, despite having this disease, was SO comforting to me.  Margie has become a close friend that I love dearly.  I cannot yet say that I am thankful for diabetes, but I am SO thankful for the people that this disease has brought into our lives.

Managing this disease is a constant battle.  It never rests.  The word that we, my Tyler Type One family of moms, have all landed on is relentless. This disease is relentless!  There is no "today we're going to take a day off from diabetes and just relax."  No, "tomorrow will be better."  Until there's a cure, we don't really ever know what tomorrow holds or what the next hour holds for that matter.

We check Faith's blood 10 to 15 times on a good day, more if she's sick.  She gets around 8 shots a day.  We check her during the night, any time she's fussy or sleepy, and anytime she is hungry.  Her tiny fingers are so poked up. Most days she handles it like a trooper, but she does have what we call our "We Hate Diabetes" days where she just can't take it.  These days she will just fall apart crying anytime she sees me reach for any of her paraphernalia. Most days, when I give her an injection, she says, "tank tu," when I'm done.  God love her. On the outside, she looks perfectly normal and healthy, but inside a battle rages 24 hours a day.  The inability to see it from the outside leads to a lot of "What is the big deal?" and "She'll be fine, I'm sure she'll grow out of it" comments that I'm sure are not meant to hurt, but do. Before she learned to walk, she learned to sit through 8-18 finger pokes a day.  She learned to be brave through her insulin shots before she could even say the word "shot."

Without a cure she will never remember a single day without a finger poke.  Think about that!  She'll NEVER have a single day off from counting carbs or checking her blood sugar -- not her first date, her graduation, wedding day, or the day her children are born --not one single day off.

She will not grow out of it and we are not lucky we caught it this early.  We caught it this early because she got it this early! It is a nightmare to manage at this age. Everything affects it.  When she's teething and doesn't want to eat, her blood sugars drop to dangerous levels.  When she wants to eat like a normal infant/toddler and graze all day she can't.  When she learned to walk, and thus her activity level increased, she ran low a lot.  SO many things affect it.  It is so rare for someone to be diagnosed at this age that they don't even make insulin for her.  Insulin has to be diluted specially at the hospital so that it is possible to draw up the correct amount in a syringe, which we also have to special order.  When she is sick and doesn't have an appetite, I can't explain to her that she has to eat.

It's a war, and if we don't get up and fight it every day, we'll lose.

Related Posts Plugin for WordPress, Blogger...