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!