Lazy Tuesday Morning

I'm sitting here drinking my coffee (which, I have no idea why on earth I waited until 10 to start drinking coffee!) , Hunter's watching Wall-E (which we raced out this morning to get after we dropped Will off at school - He's been saving a duplicate birthday present to exchange for the DVD when it came out and has been patiently waiting for a month now), Olivia is taking her morning nape, and I just am not feeling well. I know I said that I think of all these grand things to blog about and how to word them perfectly, but it seems every time I sit down at the computer, my mind goes blank. Or, the news is just so horrible, I'm not at liberty to share it with the world wide web. Sigh.

My count dropped last week to 12,000, which meant another round of steroids. I haven't had to treat in over 4 months and I know I should be thankful for that. And I am. But I think, in a way, that not taking the steroids has made it harder to deal with the side-effects when I DO have to take them. It's been a long week. I started taking Zoloft for anxiety, when I was taking steroids regularly and it was awesome. It totally helped and even though I hated being on one more drug, it made life tolerable. As life calmed down, and I was taking the steroids less and less, I started feeling just 'medicated' and had my Dr. switch me to Lexapro which is not nearly as strong, and has fewer side-effects. I'm noticing, though, that while Lexapro is great for day to day (I don't think I really even need it on a daily basis) it is not effective at ALL while I'm on the steroid. I struggled with so much chemically induced anxiety this week, that the battle has honestly worn me out. Steroids suck. I noticed this week too, (I guess sometimes you need a break from it all to really see how your body is reacting) that I feel tired and weak when my blood is at war with itself. That part really gets me discouraged. I could deal with a blood disorder on a semi-regular basis (though, I'd clearly rather not) if it didn't have such drastic physical side-effects that affect my ability to keep up with my 'work'.
Another frustrating thing is that all the things I think "I want to start doing this when I feel better..." keep getting pushed back further and further.

So, now, with all this in mind, I'm going to finish my coffee and fold some laundry before we have to leave to get Will from Kindergarten. I'll put up some new pictures when my laptop gets back today or tomorrow!

Random (Hopefully) Useful Information

I know I suck at blogging. Bottom line. I have great thoughts while I'm away from the house on topics I'd like to blog about, think about how to put the thoughts together eloquently and come home with excitement and great intentions. But, then I get home and my 3 children and piles of housework and laundry suddenly come to the forefront of my schedule, and blogging gets pushed back.

Anyway, I have a minute while the oven pre-heats so I wanted to share my thoughts about my new favorite thing!

I was watching Oprah a few weeks ago and this lady was talking about how she can save up to 70% on her grocery bill. I was schocked and amazed and realized that even though I had no way to save 70% right off the bat, I could for sure start clipping coupons and planning my meals around the sales, and not making a meal list then buying everything full price. I also decided shopping in bulk would be a great idea as things go on sale (her idea, not really mine) but meat is especially hard for me because of freezer burn. Enter "Ziplock Vaccum Freezer System". For $11 I got the pump that sucks the air out and some quart sized bags. Love it. I figure I can write "Chicken" on the bag and reuse it over and over by writing the date in tiny print on one side and crossing it out each time the meat is replaced.

Also, my platelets dropped from 93k to 43k in 2 weeks. Still okay though, and no treatment necessary!

Hunter & Livi turn 3 and 1!

We had a big double Birthday party for Hunter and Olivia this weekend since their Birthdays are a week apart (They are 6 days short of 2 years apart in age). Since it was Livi's first, we invited lots and lots of people and we had fun! It was a little chaotic (I helped Livi open presents and Jenee helped Hunter, so I have no idea what he got from whom!), but I love family gatherings, so it was well worth it! Here are a few pictures from the party:

Livi getting her hair brushed as she wears Hunter's silly glasses.

A post-party bottle.

Skippyjon Jones!

Mmmmm. Cake!

Will...stealing a present and running.

Thank you to everyone who was able to come and make the kids' Birthdays so much fun!

I suck at blogging.

Here's the deal. As a teenager, going into college and as a young, single adult, I always tried writing in journals. I would start and do it for a couple days, then quit. After I got married, there were many reasons I wouldn't want to share so much of what was on my mind with other people, that I would only journal when I was frustrated, as a way of venting. I wish I was better...but there are other areas in my life I'm trying to discipline right now, and writing, just isn't one of them. Hopefully, someday.

Happy Birthday Olivia!

From 5 pounds 7 ounces, down to 4 pounds, 15 ounces to all grown up at one year old! I cannot believe how fast this last year has flown by. In so many ways, I am glad I kept a low profile and we stayed home so much, just the 4 of us (5 when Joel wasn't working!). Her early entrance into the world and stay in the N.I.C.U. was unimaginable at the time it happened, but I think it made us stronger as a family.

Olivia is such a healthy, active little girl and has been a joy to us during this hard, hard year. She quite simply is the perfect third child. So laid back, so easy-going, almost always happy and ready to goof around with her brothers anytime, anywhere. We are so blessed by our little girl, and that's truly what she is now...a little girl.

First Day of School!

My big boy is off to Kindergarten! He started on a Thursday and by Friday night he was so exhausted, he fell asleep early at bedtime! We are in a great school-district (Battle Ground) and Will's teacher is awesome! I found out she's a Christian and has grown children of her own (no grandkids yet) and has actually written some children's books! (The link is there, but impossible to see unless you scroll over it with this background). She's a kind and matter-of-fact lady and is cute as a button (am I allowed to say that?). I totally love her and so does William. School has been a great experience and he's already learning so much.

End Of Summer BBQ

Hunter...little heartbreaker!

Daddy & Hunter going for a horseback ride!

Will's Turn.

Hunter 'helping' with dessert!

Every year, we attend the "Uncle Dan & Lacey End-Of-Summer BBQ" at the Malmin's house. This year was no exception, and we headed over for a Mexican fiesta/family shower for Bo and Katie. Joel's cousins Rian (Tuttle) and Shawn (Stevenson) brought their horses and most of the family went riding in a monsoon! Seriously, as soon as they got out there and saddled up, it POURED buckets. But it was so fun and you should see the pics of Jenee, Jasmine & Katie. Soaking wet and they are hot, hot, hot!

I am so blessed by Joel's family. It hasn't been easy living 3 hours away from all of my own family especially since we grew up so close-knit. But Joel's family is awesome, so much fun and I love them all!

I cannot believe how big Olivia is! Her Birthday is just around the corner and my baby will be ONE! She has 5 teeth and another really close, she crawls everywhere, she can pull herself to her knees (remember she was 7 weeks early, so she's about 2 months behind in some of the developmental things like pulling up and walking), she chases the boys and will eat anything in her path. Baby girl is FEARLESS. The boys hated being thrown in the air, and she adores it when daddy does it to her. She gets on our bed with the boys and knows it's wrestle time and has honestly been the perfect baby for the year we've had. She's so easy...happy, happy all the time except when tired, hungry or poopy.

A quick 'catch up'.

I tried to upload all my pictures at once and my computer kept crashing! I guess I'll just post several small posts...so bear with me! I'm trying to go in order, too! Hopefully, I'll bet better now that we've somewhat settled into our school routine.

Thank you, everyone, for your thoughts and prayers and we capped off a pretty horrible year, with an even worse ending. All I know is God is good. Truly, through all we've been through, God's faithfulness has been astounding (isn't it funny how we're surprised when God comes through for us?). His mercies truly were new every morning and without them, I'm not sure our little family would have made it through. I can't even imagine how people walk through this life without a relationship with Christ.

--Betsy

Honestly...

Could she be any cuter??

Hunter dropped a chunk of dry watercolor paint out of the box...and Olivia found it.

At a Loss

"Plan for the worst and hope for the best" is a motto that Joel has always lived by. I think it's a good one, too. We were all hoping for the best. And I suppose it could have been worse. But when you are talking about the affect on someone's life, 'it could have been worse' just doesn't cut it.

It's bad enough.

The thoughts in my head are just swimming around in messed up circles. I just keep thinking "Why didn't I tell her I loved her more?", "What must be running through their little heads as they go to sleep tonight?", "I hope she isn't too scared, all alone"...and so many other things that as I think about them, I can't help but weep.

I just wish there was more that I could have done, that I CAN do now. I hope she knows how much I love her...how much we all support her and how we will do anything in our power to make things easier...if there even is something we can do.

Wait...I still have a blog?

Yeah...I fell off the face of the earth for a while. What can I say? It's Summer, I have 3 kids and craziness all going on and my friends all have craziness going on, so when I have a free minute, I try to think of someone other than myself for a while. I'll just update and then hope that as we work into Fall, I'll be better.

1. I figured out why Olivia wasn't eating well when I laid her down one day and realized she had 4 hard little white lines on her top gums. Poor baby is cutting her 4 top teeth all at once!
2. My platelet count had been doing okay (staying above 30k and even going up to 42k on it's own) but it dropped out to 19k last Thursday. I had to take a round of Dex and had my couple days of side-effects and am now starting to feel better again. My count was 84k yesterday.
3. Will is registered for Kindergarten! That was so exciting and scary at the same time. On the one hand, I look forward to this stage of my kids life, but on the other, I don't want to lose my baby...and I don't want my baby to lose his innocence. Does anyone else out there struggle with the balance of preparing your kids for 'real life' and wanting to protect them from everything that could ever affect them? I can't think about it too long or I make myself crazy.

Doesn't it all seem so simple when you're just in the "let's have a baby" stage? I know we considered the seriousness of being parents, but honestly, you never really know what you're getting into.

4. Joel started a new job! He's repping tile/hard surface for Emser Tile. I think this will be a good change for him, and he's for sure excited about the job.

Okay...that's it for now. I have stuff to do.

No More Bottle?

Olivia seems to be losing interest in her bottle. I started her later on baby food and she's only eating 2 jars, twice daily (so 2 stage 2 jars or 4 stage 1 jars each day), which doesn't strike me as that much solid food, but the last couple days it is a BATTLE to get her to take more than 4 ounces of formula when I offer it to her. And she's been sleeping through the night now for months so she's maybe getting 4 4oz bottles per day. Not nearly enough according to my pediatrician. I've been told to cut back on the solids to make sure she's getting at least 24 oz of formula per day, but I think munch mouth isn't going to be too happy about that since she begs for food whenever she sees the boys eating. She's 9 1/2 months, so I don't have to cut her off for much longer (we try to lose the bottle by 12 months), but it's still annoying! She's different than her brothers. I had to put fruit at the front of the spoon to get the boys to eat anything savory...they liked the sweet! She doesn't mind the fruit, really doesn't like the sweeter veggies (squash & sweet potatoes) and she LOVES the green veggies, carrots and meat of all things! Such a funny girl.
She's also rolling everywhere now and can army crawl in circles, but hasn't learned to go forward or back yet. She is for SURE at the stage where you have to have a constant eye on her because she will be gone before you can look up from whatever you're doing. Also, I usually find her rolled right over to where the boys are playing, as close as she can possibly be. She loves her brothers! I had Holly & Aaron's boys here overnight last night and she was in heaven right in the middle of the boys. I was so worried someone would step on her in their excitement, but they did good! The only mishap was one of the Cole boys gave Olivia a mini Eggo waffle. I thanked him for sharing, but told him she couldn't have those things. He'll learn soon enough when his mom is yanking chokables away from Sabrina & Sophia!

Two sets of twins eating popcorn & watching a movie before bed.

Chocolate chip pancakes & bacon for breakfast!

A New Post: I don't know what to write.

I know I haven't posted anything of any substance in a while. I think in a way, the things that we are dealing with right now are too overwhelming and personal to blog about. I don't feel comfortable blogging this bit of this chapter with everyone in cyberspace - even for the sake of the 3 people that read my blog. Or, maybe I'm just too tired to deal with it. Emotionally, physically, spiritually - Tired.

I will say this: I solicit your prayers. Joel and I, and our family, have found ourselves smack-dab in the middle of what is quite possibly one of the worst things we could imagine. It has consumed the last month of what has easily been the worst year of our lives and, frankly, it's sucking the life out of me. Aside from that, there have been hundreds of little, seemingly trivial (well, compared to this) things that by themselves might be manageable. All together, however, they are just weighing me down.

That's it. That's all I have tonight.

Don't You Just Need a Reminder Sometimes?

You are Lord of Lords
You are King of kings
You are mighty God
Lord of everything
You're Emannuel
You're the Great I am
You're my Prince of peace
Who is the Lamb
You're my living God
You're my saving grace
You will reign forever
You are ancient of days
You are alpha, omega, beginning and end
You're my Savior, Messiah, Redeemer and friend
You're my Prince of Peace
and I will live my life for You.

Something to do before bed...

5 Things I'm passionate About:

1) Living Purposefully; Making the things I do count.
2) My Love, Joel and my little loves, Will, Hunter and Olivia. Committing to be the wife and mommy they deserve.
3) My relationship with Christ - the more I go through in this life, the more tightly I cling to the cross.
4) No trans-fats!
5) Realizing that I am a steward of three little lives, not the owner - their purpose and destiny is bigger than anything I could plan for them.

5 things I want to do before I die.

1) Watch my kids grow up and grow old with Joel.
2) Do something - whether a business or a charitible cause, that makes a difference in this world.
3) Go to Europe
4) Buy/build my parents & Joel's parents a wonderful little house they can retire in.
5) Realize the call on my life and Joel's, and begin to walk in my destiny each day.

5 things I often say.

1) "Ask nicely"
2) "No."
3) "Holy crap"
4) "Good grief!
5) "Are you kidding me?"

5 books I have read lately.
1) The Red Tent
2) Real Food
3) Superfudge (getting ready to read it to Will)
4) Any number of Disney Cars related books
5) Horton Hears a Who

5 movies I have watched 5 times or more
1) The Princess Bride
2) Jurassic Park
3) You've Got Mail
4) The Patriot
5) Toy Story 2

Blood, no guts.

My count was 23k on Wednesday, so I took a round of Dex. Recheck yesterday was 56k, and I've really had a hard time with side-effects this go around. Today is the first day I started feeling 'normal' and I would say it's just a start. Not 100% myself. Keep on keepin' on.

Cole Update

Just an update for anyone wondering... Sophia Cole came home again yesterday and is doing okay, but Sabrina was taken by ambulance today to Doernbecher Children's Hospital this morning after coughing or spitting up blood. Last I heard from Holly, Sabrina was stable and they were doing some tests, but the doctors are thinking that it's pneumonia. Please be praying for Sabrina and Sophia as they are still so little (6lbs each) and fragile with all their 'preemie stuff'. Be praying for Aaron, Holly & the boys too as their family has been in utter chaos for months now.

Summer!

Livi's New Friend

Miss Sabrina Cole meeting Olivia for the first time.

Platelets

Are 33,000 today. No dex! I have to have them rechecked on Friday because they're creeping down slowly again, but at least there hasn't been a significant drop off.

Character Boy (aka, Mini-Joel)

I never in my life thought I'd have a child to whom I'd have to say "Okay, it's time to stop talking now". That child is Hunter. He not only talks non-stop all day long, he repeats himself over and over and over if he doesn't get an immediate (and I mean immediate) response. While I have to say that boy adds delight to my days and keeps me laughing with the things he comes up with (he just licked my face...for no reason whatsoever as I sat here typing), he also wears me out!

Joel says that he remembers as a little boy company coming over and at some point in the evening and his mom would say "Okay, time to go change your clothes". While she meant change for bed, he thought it was time to change costumes...so he could perform for the company. Hunter is this child. He is SO EXCITED about everything in life and wants you to be excited with him. He makes it hard to be in a bad or sad mood, and I love that about him.

Here are pictures of him first cracking up hilariously with "Nunkle Dam" and then asking (over and over, of course, even though Dan obliged immediately and repeatedly) for "more stories!". Hunter-Roo. I love you.

Platelet Update

I have some this week! We had my count done on Wednesday since I've been taking the Dexamethasone (which from now on will be referred to as 'Dex') on Thursday mornings. I discussed the possibility with Dr. K of leaving my count untreated and asked the likelyhood of my platelets working 'harder' than a normal person's since I tend to not have any symptoms (bleeding, bruising, petechiae). She said she was comfortable leaving them untreated at 30,000. Wednesday, they were 47,000 nearly a week after the dex. Yay! No dex this week for me which means I get to sleep. I'm so happy about that.

Olivia's BFFs...

(Sophia on the left...she loves her binki! Sabrina on the right.)

I just wanted to say a quick thank-you to all my family and friends who have been praying for my friends Aaron & Holly and their sweet twin girls Sabrina & Sophia (who were born just before 27 weeks). The girls are doing GREAT and get to go home soon! The girls have had so few problems considering how early they were and every time something looks to be creeping up, God swoops in and does another amazing miracle. The girls are adorable and I can't wait for them to be big enough to play with Livi! You can read more about their journey at www.hollycole.blogspot.com.

Do you want to jumpy-jump with me?

She leans a little when she jumps.

Grand Floral Parade

Saturday was the Grand Floral Parade in Portland. Joel's family used to go every year, but the last couple years, a lack of interest has kept the family from going. This year, a bunch of the family decided it was time to start going again and Shawn & Tom agreed (much to our delight) to go down early and back their pick-up trucks up to the parade route on a side street.



Joel's parents came and picked up the boys at 8:30 and Joel and I took Olivia over to the hospital to have my platelet count done to see if the single dose of Dexamethasone I took Thursday worked for me. It did! My platelets were 67,000, so we busted out of there and got to our parade spot just in time for the parade to start! (If my count had been 15,000 or less, I would have had to stay and have a round of IVIg.) I didn't get a lot of pictures (corralling three kids on a busy street with hundreds of other people around doesn't make for an excellent picture taking situation), but here are the few that I did get! The boys had a blast! They got to play with their cousins, eat donuts and hot chocolate, play with sidewalk chalk and blow bubbles. It was a fun time and after Hunter got up from his nap, he asked me "Can we go back to the parade, please, please, please, please, Pleeeeeeease??" Too cute. Also, Hunter, Jasmine & Kaden all made it on the Channel 2 news (http://www.katu.com/news/19631794.html)!



Joel and I have been talking about things that we can do as a family that will be the start of traditions for us. Last year we took the boys to the circus and decided to make it an annual outing and the parade is for sure something else we want to do. I love my family!

Thursday

My count was 16k today, so I was ordered to take 40 mg of decadron one day a week. I took it today and I go in to the hospital Saturday to have my count checked again. If it's 15k or less, I get to stay and have a round of IVIG. Good times! Maybe I'll take my computer and catch up on blogging.

Peace

A little song comes to my mind when I think about peace. I can't remember who sings it (It's a toss up between something Agapeland and Psalty I think) and the words are these -

"Shhh. Peace, be still. Shhh. Peace, be still.

We all need peace, we always will.

Shhh. Peace, be still"

A lot has happened in the last 24 hours for Joel and I both spiritually. It's all still very fresh and raw and a little personal to be sharing here right now - probably someday soon as we discover what exactly it is that God is speaking to us. But I wanted to share this. Today I was praying and looking around on the computer at different websites. Since we attended Living Hope Church, I stopped by their website to see what was new and was hit with their "Only God" slogan. I smiled and started singining the "Only God" song that they wrote for Easter last year at the Rose Garden (When Pastor John has a theme, he runs with it!). As I was singing, God started speaking to me and the realization that

Only HE is my Healer

hit me like a ton of bricks. I am currently on my 8th line of treatment for my blood disorder. 7 different treatments have not worked and the 8th one, I found out today, probably isn't either (my count is 35k today. It'll be re-checked Thursday again).

I immediately and unexplicably had the most perfect peace in my spirit. It doesn't matter that 7 treatments haven't worked. It doesn't matter that this treatment won't work. It doesn't matter if any treatment, any time works. God is in control of the war raging in my blood right now. When He chooses to heal me, it will be in His time and for His glory - which incidentally has been the cry of my heart the last year as we've dealt with so many hard things in our family.

Today my count was down. But I am more encouraged than ever. I am believing that as I journey through this season, God's going to answer the one prayer that I have cried out for since the very beginning: That His Name be glorified in my life.

She can't sit up yet, but she can do this:

Sorry it's sideways!

Prunes!

Quick Update

I went in a week ago (Memorial Day) and my platelet count was at 189k after 5 days of steroids. On Thursday, it was 187k still!! I honestly was a little shocked. I don't think my count has stayed the same for 4 in over a year. I go in again Tuesday to see where we're at. On a related note, the steroids jacked me up good. While I was on them, I had anxiety attacks, couldn't sleep, trouble regulating my temperature (frying hot one minute, freezing cold the next). As I went off them (I was told not to wean off like you normally would off a steroid) I struggled with more anxiety, sleepless nights, extreme muscle fatigue, dizziness, and joint pain. To lift my children was a struggle. More and more I am asking God for a miracle in my life. As the treatments seem to be more troublesome than the problem we're treating, I am having a hard time allowing my Dr. to "treat" the problem. Please continue to pray for me (2 weeks a month dealing with these side-effects) and for our family as the last year/year and a half have been a trying time for us in almost every area. Thanks!

There must be a leak...

Last Thursday at my appointment with Dr. K., my platelet count was 617,000. A week later, on Thursday, it was 40,000. While 40k is better than 8k (which it was a couple weeks ago), it's still discouraging that I lost almost 600,000 platelets in only a week! I have started the steroid 'pulse' and am on day three of the nasty pills. They only come in 4mg pills (it's dexamethasone, not prednisone this time) so I get to take a handful of 10 each morning. I am allowed to spread them throughout the day, but since the large dose makes it harder to sleep, I prefer to take them all at once in the morning with breakfast. I'm going Monday (my last day on this round of steroids) to the hospital to have my count checked again. Then, I go Tuesday to have a bone density scan done to check for bone deterioration. I had a bone scan done a couple weeks ago, but I guess they are different scans. Nice of them to tell me that up front! I feel as though I've unwillingly donated my body to science sometimes!

Anyway, that's the news for now. I'll post more Monday or Tuesday after I get my count back.

Update

Ecc. 3:11: "God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God's work from beginning to end. "

So much to tell! Let me start by saying this: My faith has been stirred. Maybe it was the weeks of not being able to participate in church or church related activities, maybe it was the constant agonizing pain and/or the dopiness of the pain meds, maybe it was a combination of everything the last year + has held for me (and us), but I was losing my faith. I didn't stop believing in God or deny the fact that I believed Jesus is the Son of God, and he saved my soul, but I was losing my belief that God could really work a miracle in my life. That being said, here's the 'practical' plan for my health and the spiritual side of God working in my life and in my body.

Treatment: We have stopped the injections. While I was very disappointed and overwhelmed at the thought of them not working, I was VERY relieved because frankly, I couldn't handle the pain anymore. Between the pain and the pain meds, taking care of my husband, children and home was nearly impossible. I never left the house unless I didn't have a choice and the kids and I spent a LOT of time "snuggling" on the couch watching cartoons together - because I couldn't handle doing much else. I have a new respect for people in chronic pain. The longer it goes on, the more it wears on your mental, emotional and, if you aren't careful, spiritual state.

I went in on Thursday (with my wonderful Husband by my side) and met with my Doctor. My count was 617,000 which leads us to believe that if we could do small doses of something to stop destruction and do small doses of AMG 531 to cause production, we could have a good plan on our hands. However, until the AMG drug is FDA approved, the Doctors' hands are tied in how they're allowed to use it. Since we couldn't immediately go down to a small dose (requirements stipulate that it must be weaned down dose by dose), we decided to stop completely and try something else. If my count is 300,000 or less on Tuesday (i.e., down my more than half), we will start a round of 'pulsing' the steroid dexamethasone, 40mg for 5 days, then off for 3 weeks. We're going to try this for three months.

All of that being said, Tuesday afternoon, I went in for my lab draw and the study nurse had decided to hold off on my injection until my appointment on Thursday. On Thursday after my appointment (after it was finalized that I was off for good) I emailed my house church pastors to let them know we'd be able to start coming again. She emailed back and said that they had prayed for me/us that Tuesday night, which is not a coincidence that all of this happened the same week as the decision for my treatment to stop. Today, we were at church and there was an altar call for prayer for healing. Of course I jumped on it and as we went forward, Joel's cousin Shawn met us at the front (they're house church/lay pastors on the prayer team). He said that he had really had a burden to pray for me/us as he walked into church this morning and was glad that we were standing there together.

I can't say what will happen Tuesday, but I know this: God's timing is perfect.

What God Hath Promised

Yesterday my count was 567,000 and I didn't get an injection. I'm going in tomorrow to see Dr. K. and to make a decision about my treatment. The pain has gotten to the point where it's intolerable and I'm dependant on pain meds to keep it under control. I hate it. I hate it so much. It's not a benefit to anyone if the treatment is worse than the problem we're trying to control.

I should be happy and elated - my count is up and no injection leading to pain this week...but I feel very overwhelmed. To be honest, I feel let down that this treatment didn't work for me. Now what? I know my Dr. has the next steps of what she wants to try lined up, and I'm confident in her ability. Where my confidence is lagging is holding on to the promise that I dont' serve a God of statistics, I serve a God of miracles. My faith never wavered when Holly was on bedrest with her little girls, but for myself, in the midst of all of this, it's an overwhelming 'reality' that ITP, according to statistics, never goes away. It might go into remission for a short, or even long time, but it never goes away. I know I need to put away the statistics and get out the Word of God. I'm just so tired.


God hath not promised skies always blue,
Flower strewn pathways all our lives through;
God hath not promised sun without rain,
Joy without sorrow, peace without pain.

Refrain

But God hath promised strength for the day,
Rest for the labor, light for the way,
Grace for the trials, help from above,
Unfailing sympathy, undying love.

God hath not promised we shall not know
Toil and temptation, trouble and woe;
He hath not told us we shall not bear
Many a burden, many a care.

Refrain

God hath not promised smooth roads and wide,
Swift, easy travel, needing no guide;
Never a mountain rocky and steep,
Never a river turbid and deep.

Words by Annie J. Flint
Music by William M. Runyun

I still believe God is in control...

Today I went in for a platelet count check since they were down on Tuesday and we also left my AMG dose at 7. I have 8,000 platelets. I was sent immediately (well, with a stop off at home to change into comfy clothes) to Southwest Washington Medical Center to have a platelet transfusion and 80g of IVIg. Here's the awesome part: I didn't get to go for my massage because of my count being too low AND SWMC has changed the brand of IVIg they use. To the one that Legacy uses. The one that has to be run insanely slow and gives me horrible migraines. I've been in tears a lot today. I feel like I've been punched in the stomach. It was like one piece of bad news after another all day long today. We are so blessed that we have family around to help us though and Joel's grandma watched the kids this morning and his dad took over in the afternoon until Joel got home from work.
I still believe God is in control. I still believe there is a plan for my life and I have a destiny to fulfill. But honestly, a year later, I am starting to feel weary. I am literally physically exhausted and mentally and emotionally trying not to check out.
I'm going to stop being a wah-wah now and go to bed. I have another full day of IVIg tomorrow and my mom and dad are coming to spend some time with me at the hospital. That has honestly been the highlight of my day. I am so very happy that they are able to do that.

Massage Therapy - Mommyville just got a little easier.

My platelet count was down to 58k this week. Bummer! I went in on Friday for a mid-week (mid injection week) check because it was down to 75k last Tuesday. It was up to 193k on Friday! I breathed a little easier and had a good weekend with my kids and hubby. I am going in again this Friday because we left my dose at 7mcg, and since my count was down, my Dr. wants to check my count before the weekend to make sure it's gone up.

The good news for this week is that we're going to start trying massage therapy to combat the pain I'm in to see if I can depend less on narcotics for pain relief. I get to go in Friday for my first massage and am happy to announce that it's covered my my insurance! I'll be honest, if not for the pain, then for the fact that I am a mother of three children 5 and under, I am really looking forward to an hour long massage. Every week. My kids' pediatrician is also technically my primary care doctor (she's an internist) so she recommended accupuncture if the massage therapy doesn't work for me.

Livi had her 6 month well-baby check-up today (she's actually 7 months...we got in late this time) and is 14lbs 13oz and 25.5'' long. On the non-adjusted growth (so the curve for term babies) she's 15% for weight and 20% for height. She's doing great! She had her shots today and she REALLY let the doctors and nurses know that she was MAD. Normally, the boys would get their shots, I'd pick them up and calm them down and they'd be fine. We could get dressed, get in the car and they'd fall asleep. She screamed (Screamed, mind you, not cried) the whole time getting dressed, while the boys picked out stickers and all the way to the car. She's a fairly laid back baby, but when she's upset, she lets you know. Drama.

Insomnia

One of the wonderful side-effects of my injections (which, I just found out this week) is insomnia in 16% of patients. Wonderful. Nothing helps chronic pain like not getting enough sleep! Tonight, I'm trying to take it in stride and instead of laying in bed trying to fall asleep while my mind races around thinking of all the things I need to get done, I'm getting some of the things done! I just swapped a load of laundry, swept and mopped the downstairs floors, and unloaded and reloaded the dishwasher. Tonight when I do finally fall into bed, I hope to not only be good and tired, but also not have anything to think about because everything that I can be doing while awake is done!

Since I was in so much pain with my injections, my Doctor decided to take my dose of AMG 531 down to 7mcg from 8. Since my platelets were down on Tuesday AND we lowered the dose, I went in on Friday for another platelet check to make sure we didn't need to treat with IVIg over the weekend. Happylujah! My count was 193k!! I was very encouraged by this and almost skipped out of the office on my way to the weekend.
The pain is not much better this week with the lower dose. I am finding this week that I wake up (with no pain meds in my system) to stiff and painful joints. I have a hard time even getting out of bed most mornings. Once I am up, moving and have some Doans or Oxy in me, I start to feel better, but getting out of bed SUCKS.
My floor should be dry now, so I'm off to replace the furniture and finish up what I need to so I can go to bed!

ITP Update 4/29/08

Platelets were 75k today, down from 196k. My doctor decided to go ahead and reduce my dose of AMG 531 from 8mcg to 7mcg to see if it makes any difference in the amount of pain I'm in every day. I don't anticipate much of a change this week, but hopefully next week if we go down again it will make a difference.

More of the same - ITP Update

Platelets were 196k today, up from 89k last week! Yay! Dose of meds stayed at 8 (same as last week) and the only thing really any different this week is pain management. I spent a little while discussing this last week with my nurse and the nurse in charge of the study. This week, I had pain all the way through to last night, even. It's been more common to have it start to be significantly better by Friday and the weekends are usually really good, but this week, that was not the case. I hate being dependant on pain meds, but on the other hand, I need them for the constant pain I'm in.

If you believe in prayer...

Please be praying for my friend Holly. She delivered her twin girls Sabrina & Sophia last night around 8:00pm at 27 weeks, 3 days gestation. Both girls were 2lbs 3oz and are doing okay now, though Baby B had some complications during the night. Holly has also had some complications from the C-Section and while she is doing okay, she is very weak and sick right now. As any Mama out there knows, it's distressing to be sick when you know that people are depending on you, so it's hard for Holly right now on top of all the other stress that's on her.



Specifically, you can pray for continued development and health for Sabrina & Sophia, strength & health for Holly, and peace & strength for Aaron, the boys and the extended family as they go through this trying time. Let's believe for an even MORE awesome testimony of God's love and grace than they've already seen in their lives during this time.



Thanks everyone!

A Weekend Away

This weekend I was able to get away with some of my good friends. We planned a trip to Olivia Beach for the weekend and it was WONDERFUL! Sometimes you don't realize how much you need a break until you get it. We were able to hang out and watch movies, nap, hit the Lincoln City outlets and go to dinner. We made breakfast in and just relaxed, which is exactly what this mama needed. I had a GREAT time and I am excited for next year already!

Olivia is Eating!

Miss O. joined us at the dinner table tonight, so since she's just passed the 6 month mark (April 6th) I decided to mix up some rice cereal for her to eat! I can't believe she's six months old already. She's so close to rolling over from her back to her tummy. I honestly think the only thing holding her back is the fact that she HATES being on her tummy! Livi's little personality has really started to develop the last month or so and I can't wait to see who this little girl becomes. Sunday at church, there was another baby girl about one or so, sitting in the row in front of us. She and Olivia toothlessly grinned at one another and suddenly, Joel and I hear a quiet "growling". Livi was totally growling at the other baby! She had the biggest smile on her face, but she was growling at her! It was so funny.

Speaking of funny things that happened at church, an older man was sitting behind us in church (by himself) when we noticed he had fallen asleep. He started snoring! It was pretty quiet, but every so often, he'd let one out that would get a couple people to turn around and look. I felt really sorry for the guy, but since you never know how people wake up (or react to being awakened) I thought it would be best to just let him sleep since Pastor Bob was preaching at the time. Well...close to the end of service (I was PRAYING nothing would happen before the service ended) he let out this SUPER loud snort and woke himself up! He looked around to see several people totally turned around looking at him and quickly got up and left the service. I felt so bad for him!