Watch out world!

Guess who's behind the wheel again??? Yep, that would be ME- woohoo!!! I passed David's driving test last week, and he cut me loose. It was weird but great to be driving again. This has been the second long stretch of not driving- 1.5 years while living in Vietnam and four months here with this flare up. Pretty freeing feeling to not have to depend ALL the time on someone for every single ride!

Sorry I can't put captions under each photo when I post from my phone. Mom had the privilege of directing her ladies ensemble in the national
anthem at the Big 12 championship game-cool! Lady Baylor Bears won!

The girls and I attended Secret Keeper Girl pajama party tour live last nite. They were asked to be models for modesty, and they said yes! They did a great job and had lots of fun! It was a great event for moms and daughters teaching modesty in dressing and true beauty from the inside that comes from a relationship with The Lord.

My next IVIG is next week, March 4-6. I'm so thankful the treatments seem to be working. I'm getting stronger, PT is getting so much easier, and I'm having minimal side effects. Well, to be honest... I'm struggling with my oh-so-thinning crown (my hair!)- uggh. My doctor says hair loss can happen when one is very sick, and the more I read about IVIG it is a side effect, too. So, it make sense that my hair thinning (sounds better than hair loss to me!) has gotten worse these past two months since I started IVIG. I know it's a small price to pay if my overall health is improving, but it still is difficult to look in the mirror and see a different person in the mirror than just two years ago due to this horrible disease and medicines pumped into my body. It's a challenge- not gonna lie. I guess I'm having to work a little extra at modeling for my girls that our beauty does come from the inside and walk with The Lord.

Delayed Daddy/Daughter Date...

Okay, say that title five times fast! David had planned a special Valentine's daddy/daughter date for the girls several weeks ago, but it was postponed three times due to the girls getting sick and David's work schedule. He bought them long stem red roses, cards and chocolates to accompany them on their date. Well, the girls benefited from two box of chocolates since daddy gave them some to make them feel better while they were sick then gave them some more last night on the real date...not too bad of a deal! I love how my man loves our girls and how they adore their daddy. They have a special relationship, and I pray that continues throughout their lives. We are very intentional about taking the girls out on "dates"- sometimes we take them together, but we do lots of one on one dates, too. It is just so convicting to David and me that in our culture today that as parents we must, must, must make every effort to raise our girls knowing that their expectations later in life with dating and marriage must be modeled to them (oh, and how we fail so often- uggh!), covered in prayer and trust God with it all!

HAPPY dance!

Well, something on my blog has gone haywire, so iif you subscribe to my blog and are receiving this for the second or third time please forgive! This original post was dated February 11, 2013. Sorry! Any techie type of person out there who can help me??? All my horizontal pictures are getting chopped off all of the sudden. Leave a comment with your email :-)
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I was going to write about our last week's events before I told about my appointment with the rheumatologist today...but I can't wait! My CPK has gone down to 500!!! Woohoo, happy dance, praise The Lord!! It hasn't been under 1000 since last August/September! Can we say excited? I actually didn't get my results back until closing time today. The rheumy was again so pleased with my progress (even before he took my labs) when he saw me first thing this morning (based on my symptoms, strength and improvement after the IVIG). Pretty humbling to hear him say again, "You were a very sick little lady when I first saw you in hospital, and I wasn't sure how all this (any treatment) was going to play out for you." Quite frankly, I do believe was a bit nervous/scared(as David and I were, too, to be quite honest ). Ugh. Well, all I can say is praise God from all blessings flow. HE is the Great Physician and has been using prayers, medicines, doctors, IVIG and time to heal me.

So, last week was a busy week for me (relatively...for me!). On day 3 of IVIG I noticed I was sitting in such a way that my legs were stretched out like I hadn't been able to in months! I stood up to try to bend them again...and... I could! Goodness, I was so thrilled! For several months my quads/thighs have been so super tight they've felt like rubber bands that were about to snap at any moment! Although I wrenched my back almost two weeks ago, had a constant dull headache, and the PT has had to "rethink" my therapy due to all of those issues...I had a great week. I was much more active. I could definitely tell I had more strength- endurance and power. Yay!

I even had a little bit "ummph" in me to host Audrey An's birthday party (just a couple of months late, poor baby!). Yes, I planned on a day when David was in town. Abigail loooooves to decorate and bake so she was most helpful, too. It was a very low key/ low maintenance party. AA invited three little gals over after school. They brought their favorite doll, played bingo, dress up, painted nails and had a tea party- fun for all! Another exciting thing for Audrey An was last night she found out she did get a part in the musical she tried out for at church. She has a non-speaking part... a sheep! She couldn't be more exited about her "non-speaking" part. Seriously, sooooo beyond ecstatic!! The first thing she asked was, "Mommy! Do I get to wear a sheep costume?!" Then, one hour later-KABOOM! She spikes almost 103 fever. Ok, where did that come from? She and daddy-o got themselves to the family practice that is thankfully open on Sunday. No strep, but we are awaiting flu test results. She didn't go to school today nor will she tomorrow because of fever. Bless her heart. She did perk up a bit tonite when she and Abigail opened a Valentines package from their Nana, Papa D, aunt/uncle and cousins :-)

One more blessing that came tonight- we skyped with AA's foster family. It has been several months since we "talked" with them. It's always such a surreal experience. They are really lovely people. We are and always be so grateful for them! Many smiles were exchanged and even a tear wiped away by her foster mom when AA showed her a red rose that David bought for the girls and I typed "red rose for mama". Our real time translation tool hasn't been working too well so it's a tad tedious cutting and pasting our conversations into google translate- but at least we have that! They cared (care) for Audrey An deeply and are genuinely so thrilled to see us on-line.

Grateful.

Lots to be thankful for today. As our Sunday School class has started a new study in the book of James, I guess today is good example of a day when it IS actually easier to "count it all joy..."

May it last longer than a day-

Really???

So...Audrey An was not any better this morning in spite of her two hour yesterday afternoon reprieve. Praise God (truly!) David had off today to take her back to the doctor. The doctor recommended taking her for further testing at the Children's hospital on the complete other side of town. Loooong day and loooong story short they did X-rays of her chest and abdomen, drew blood (two different times...AND the staff was amazed because girl does NOT flinch!), wheelchaired around, and did a breathing treatment- all without her momma being there to hold her hand. Sniff sniff... for BOTH of us!! Bottom line: she has walking pneumonia and her stomach cramping is from, well, not pneumonia related. She's miserable. Oh! And she's lost two pounds this week. Like she has two pounds to lose!!! Bless her heart!

Praises for my little girl are that we've got correct diagnosis and meds (we think!). Praise that David was in town to see about her today. Please pray complete protection against ANY more infection for our family. Given that I have dermatomyositis, I'm needing specific prayer for this. It can be very dangerous for DM patients to get any kind of upper respiratory infection due to already weakened muscles and breathing difficulties at times. I have had a flare up on my hands (the typical redness that comes and goes with me) and an itch (not normal) late this afternoon. God has protected me this week with three sick family members in the house, and I am asking boldly that The Lord will continue to keep me in the palm of His hand! The other request for Audrey An is that she will continue to trust God even when she doesn't think He is answering her prayers. We had a great discussion last night about this (these are probably my most favorite mommy moments!). She just cried crocodile tears while telling me she missed school and friends this week and wanted to be well. I asked her if she thought God heard her prayers and she looked up at me with a quivering lip and those dark chocolate brown eyes and shook her head very sheepishly "no". Isn't that how we all feel sometimes? I told her that God had answered her prayer about returning to school (especially on Valentine's Day), but it was not the answer she wanted. I told her that her body wasn't ready to go back to school and if He had said "yes" she could get her sweet friends sick. Sometimes God says "no" to protect others. Sometimes He says "no" because its just not quite His timing. Oh, how I love to teach me, myself and I my own lessons sometimes through my own kids .

Abigail update: she caught the last two days of school this week and is feeling better. She still does have a cough though. I had to include the two pics of Abby tonight with her new sponge rollers- flashback to my childhood!

To clarify! Audrey An did go to the ER, but she was released. She is safe and sound at home now!

Roses, Chocolate and Rx (or two!)

Nothing says Happy Valentine's Day to your two daughters like prescriptions from Walgreens, right??? (Or your man going to our new Sunday School class' party without you because mommy nurse needs to be at home with the little sickies). Audrey An has been out of school all week, and Abigail missed Wednesday. Thankfully, no strep or flu for either one of them. AA's cough is about to drive us all nutso....ahem, "Love is patient. Love is kind..." :-) I'm so thankful of David's days off this week since I'm still not driving yet. He has taken both girls to the doctor, filled prescriptions and kept the fridge stocked...what a guy! Love you, Valentine!

David gave the pretty red roses to the girls over the weekend. He asked the girls out on a daddy/daughter date, but they didn't get to go due to Audrey An getting sick. Oh, they were all so disappointed since it was the talk and anticipation ALL week long. Better "date" days ahead though! Abigail went to school today, and AA has perked juuuuuuust a bit this afternoon.

IVIG Round #2

I started my second IVIG 3 day treatment yesterday. Thankfully, at the end of Day 2 of 3 I've not had any bad side effects. This round (and the remaining treatments) of IVIG will be completed in home. On Wednesday, we received two large boxes via UPS filled with all the meds and supplies- complete with IV pole. (Isn't my delivery guy handsome? See below!) The company asked if they could leave the boxes on my doorstep if I wasn't home. Ummmmm, NO!!!! I'm not chancing a very expensive shipment of blood plasma (or what I'm calling liquid gold!!) being delivered to the wrong house or being stolen. Guess what happened?? They left it on my doorstep...and David and I were even home when it was delivered. Thankful I spotted it quickly! I've had two different nurses each day and both have been super nice. They both had difficulty finding a "good vein" and had to stick me several times, but we got my liquid gold flowing finally-even had to restick me mid-infusion because it was leaking. Liquid Gold canNOT leak...just sayin!!!!

Other praises aside from the obvious of getting my IVIG finally approved and scheduled after A LOT of red tape, phone calls and frustration include the following:
*I'm grateful that when a new month of flying started for David yesterday,the timing of the in-home infusions corresponded with when my man being gone-yay!
*Abigail "re-started" flute lessons. This is another huge answer to prayer. She's been completely frustrated all year long with band. We had started lessons (actually just one) right when I had my flare up in the Fall; therefore, I couldn't continue the lessons due to my inability to drive and get her there which resulted in more flute frustration which resulted in more guilt for me of things I can't do for my children...and I regress...
*Her flute teacher came to our house this week for a lesson! She will continue to work with her after school one day a week at the school. Now David will just have to delay school pick up that day and we are good to go!
*Audrey An auditioned for a short drama part for her church choir musical. I was so proud of her. She was really excited to try out, but then her nerves and the "what if I mess up?" attitude got the best of her last week. I stopped that immediately and asked her what we did when we were scared. She said, "Pray." By the time she got home from music practice last week she had a smile on her face and came bouncing into the house all Audrey An-like with a different attitude and announced matter of factly, "Mommy, I have prayed and I think I'm going to be okay. I want to try out for a part!" So, we practiced the 4-5 lines and prayed all week about just doing her best, it's ok if you don't get a drama part, and praying through things that are scarey to us (mommy included!), etc. Results to be announced at a later date!!!

Lastly, I couldn't leave out a special large envelope that was delivered this week. It was full of encouraging cards and scriptures from the ladies of my sisters adult bible fellowship class from her her church. It made me tear up, of course. Again, I can't express the gratitude of the prayer warriors interceding on my behalf! Some of my favorite scriptures on these cards....
*Isaiah 26:3 "You will keep in perfect peace those whose minds are steadfast, because they trust in you."
*Isaiah 41:10 "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."
*John 10:10 "The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full."
*Romans 15:13 "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."
*I Peter 5:6-11 "Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings. And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen."

I also wanted to share a quote I read this week from Pastor Tony Evans of Oak Cliff Bible Church in Dallas, Tx: "Sometimes God will allow you to experience a bigger-than-life Goliath so that you get to experience a bigger-than-Goliath God." Awwwww, I love that ! Bring on the sling shot, baby!!!!!

When you pray for me, please add a high school friend of mine's daughter, Hannah (she is a teenager), to your prayer list as well. She's been ill for a year now and just completed her second IVIG treatment yesterday, too. We will overcome!