We are completely disoriented.

Wednesday: seemed both comforting & productive. We all really believed she turned a corner.

Today: cards...visit (http://www.st-johns.org/visitor_info/cheercards_home.aspx) to send cards to Regan. Apparently they are printed out in a little gift shop here in the hospital & delivered by a little-old-man-volunteer. After he had made multiple trips to our nurse's station, Chantell overheard him ask, "Who is this girl?" After the nurse explained, he said, "We've never had this many messages for one patient...we barely get this many for the entire hospital!"

It's amazing to think how many people are impacted by this little girl...who has never spoken a word. You may not realize it, but this blog is read by people all over the world (it would be encouraging to read your responses/prayers)...now that is some community...and it gets the attention of the hospital workers & doctors around us. They all wonder, "Who is this girl? Who is this strange community that supports her family?"

We hope that they eventually ask, "Who is their God?" Because we all know that as much as we really do love Regan, this is also about God. We're watching & supporting Regan for His name's sake. We really want to see God's power in the weakest places, to experience it and to praise him for it....don't we? Don't you? Isn't that what you're looking for here? We all desperately need to see God's presence in Regan's life. Our faith may depend on it.

4pm: I arrived @ the hospital w/ the older two kids. Regan looked about the same as yesterday...disappointing, since I was hoping for more obvious progress. But she was alert, singing & laughing again.

6-10pm: she sent every monitor alarm into a fit and bounced her numbers around like basketballs. I've never seen her chest heave like that for so long. She seemed somewhere between panicked & excited. And I was scared.

6:30pm: Doctors have talked to us for years about DNR (do not resuscitate) orders, encouraging us to consider the limits of medical treatment we were willing to use. But this week is the first time they have asked us for an answer. They did it on Monday and again just now. We requested some changes to her treatment, hoping to settle down her system. (Do we even know what we're talking about?)

8:45pm: Chantell and I had to decide whether she should go home w/ the kids as planned or stay w/ me just in case. Should we have the kids camp-out in the family room? How are you supposed to make those decisions? And how are you supposed to live with their consequences?

We tried to watch the numbers on the monitors & find some trends. Finally, we just had to go w/ our gut...we decided that they all needed rest, and that Regan would probably pull through the night.

9pm: I'm divining every blinking light in the room for some sign that we made the right decision.

11:30pm: Right now she seems as peaceful as she's been in awhile. Her numbers look better. She sounds better. She's breathing a little easier. The changes we made 5 hours ago are paying off...so I'm going to bed.

Tomorrow?: I honestly have no idea what tomorrow holds. I don't know whether to anticipate progress or pain. So I have to rest in Psalm 33...read the whole thing when you get a chance. But take this w/ you for now: "We wait in hope for the Lord; he is our help and our shield. In him our hearts rejoice, for we trust in his holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in you."

Laughter is Good Medicine

Today has been a good day...Regan is very alert & happy. I got to lay next to her for nearly an hour while she talked, sang & laughed w/ me.

But she's in the same place clinically...she's still struggling much too hard for every breath. It's like she's been running marathons around the clock since Sunday. I'd be dead or angry...maybe both. But Regan seems to have a sweet fellowship with the Holy Spirit that helps her to maintain a good attitude, pleasant disposition, and a strong enduring hope. We pray that her body finds the same strength to endure this marathon. While we still wait for progress, we are at least grateful that her condition isn't getting worse.

Wait Control?

Five years ago today--when life changed forever--I remember well how hard it was to wait. We were disoriented. We didn't know what we were dealing w/ in Regan. We didn't know how our lives would change. And our lives had been relatively easy up to that point--so we weren't sure how to handle personal crisis of this magnitude.

I was impatient for test results. I was impatient for Regan's progress. I was impatient to interpret it all w/ doctors & try to peak around the corner. But we constantly had to wait. We were in the hospital for nearly a week....we spent most of that time waiting for the next test, result, event or consultation. And when we got home the waiting got worse. Now our doctors had to schedule weeks ahead just to see us 45 minutes. You'd think after 5 years of that, we'd be used to waiting for answers. But I'm not.

I know God is teaching me to wait on him...to trust him. But that's hard for someone who is independent in the name of "responsibility" and a control-freak in the name of "stewardship."

Chantell, Ryder, Rylee & I have been here w/ Regan all day...we spent the night up here last night after some warning from the doctors that Regan could get much worse. But the good news is that she hasn't. There's been no relative change. She's still working much too hard for every breath. And we're still holding ours to see how she'll do.

The bottom line is this: Regan is receiving the most aggressive & supportive therapy she can get right now--and she's not improving. The doctors try to calm us by saying it will just take time--for some kids it can take days to see real improvement. But they admit their concern for Regan's energy resources. How long can she endure labored breathing? It seems we have to wait and see...thanks for waiting w/ us.

A Little Inspiration, Please?

Chantell is a lot better at hope than I am. Oh, don't get me wrong...I have it & hold on to it. I even like to pass it around whenever I can. But sometimes I just need to get the cynic out of the way first...Would I disappoint you?

My calendar is a little different than Chantell's, too...on my calendar, Regan was admitted to the hospital for the first time on March 27, 2002. (Remember it was a Wednesday, Dear...) That means tomorrow will be the irony of ironies as we remember the day our life changed forever 5 years ago...and we'll celebrate the day in typical Regan fashion--in the hospital.

The older two kids were off for the weekend w/ Grandma. I had come home a little early from work so Chantell & I could go out for the evening. And I noticed Regan was unusually hot. Turns out she sustained a 102-105 temperature all night. We treated it until it broke mid-morning on Saturday. Then we ran some tests during the day to determine what was going on. All were negative. But the fever returned Saturday night. Sunday morning we took her to the ER first thing. They found a mild pneumonia & began treating it w/ a quick 24-hour therapy schedule. We thought we'd be out soon. But by 5pm they increased her status to ICU and put her on an external ventilator to deliver 40% oxygen, multiple nebulized meds continually and forced air. The goal was to support her system as she struggled to get enough oxygen into her blood. She was working really hard to breathe.

Turns out 24 hours later she has more medications in her body than she's ever had at one time before (somewhere over 15...I'm losing count). She has more medical technical support than she's ever had at one time (5 different pumps putting things into her body, 3 different machine removing thing from her body, and 8 things monitoring different vital functions). And she's more vulnerable than ever. I'm sure I could be pretty dramatic right now...and it would feel therapeutic for a little while to let it all out. But I'm more interested in Regan's therapy than mine...

To be "inspired" is literally "to have breath." It also means "to be spirited." Would you please pray for Regan to be inspired w/ breath tonight? And would you pray for Chantell & I to be inspired w/ Holy Spirit wisdom and strength. Many kids like Regan go through this all the time. But this is new territory for us. And we're trying to find the path that leads through it.

From comfort to comfort to comfort.....

Five years ago this week Regan began having seizures. It is strange to think back to all that has changed in those years. Like most anniversaries it seems like only yesterday but in so many ways also feels like a life time ago. Five years is not really that long but I feel like I have aged twenty years. It was on the 22nd of March that Regan had her first seizure. It was on the 28th of March that we were in the ER for the first time. On March 31st this picture was taken it was Easter morning we were celebrating the resurrection from the hospital. (I told you we have aged 25 years!) On that day in the ER God have me this scripture that brought me comfort that day, and today and many many days in between. May it bring you comfort as well.

2 Corinthians 1:3-11
"Praise be the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comforts, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed it for your comfort and salvation; if we are comforted , it is for your comfort , which produces in you patient endurance of the same sufferings we suffer. And our hope is firm, because we know that just as you share in our suffering, so also you share in our comfort. We do not want you to be uniformed brothers about the hardships we suffered in the province of Asia, We are under great pressure far beyond our abilities to endure, so that we despaired even of life. Indeed in our hears we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril , and he will deliver us. ON him we have set our hope that he will contiune to deliver us.. as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."

...a life on hold!

So today is just one of those days were I have to keep on laughing in order not to lose my mind. My mama told me there would be days like these....I am sure your mama told you the same.

We do not have a land line which is great because I don't have to come home and find out who's call I missed or how many phone calls I have to return. I never want a land line again. I love my cell phone. Except when I have to make doctors or insurance calls. I have been either on hold or on the phone with an insurance company since noon and it is now 1:33p. That is a lot of minutes. I am not not done yet. As I type I am interrupted every few seconds with "Please hold for the next available operator." Even funnier is that I have been on hold for 15 minutes and they gave me an estimated time of only 1! I think their estimator needs a trip to the emergency room because something is wrong with it. When they go to the emergency room I hope it is in network or else they may find themselves on phone trying to get it all straightened out.

I also love this line just given to me by the billing company that I was dealing with before this phone call. I was on the phone with her for twenty minutes and she said at least five different times that this bill looked strange and that it didn't make sense that Regan's secondary insurance had not payed the the difference..BUT their was nothing she could do. NOTHING THAT YOU CAN DO! So, I said, "Well there is nothing that I can do either; if you get to use that as an excuse then I do to." She said, "No Mrs Mills you have to pay it." So I said, "Then we better figure out what you can do because I am not paying a bill that in your words 'looks strange and doesn't make sense.' So why don't you let me talk to someone who can do something." She put me on hold. Then she hung up on me. But at least as they electronic system was hanging up on me it said, "Good-bye and thank you for calling."

So I decided to write on the blog.....and say that I am thankful that God gives us people in our lives that will not...
Put you on hold
Tell you there is nothing they can do
Ask you if you could hold while they pick up the other line.
Ask you to please hold for the next available operator.

And even if your friends (me included) sometimes will God never does...

to an endless measure.....

Ryder took ISAT's this week. He didn't mind it too much because that meant no homework and because it has been so beautiful here this week he could really play outside a lot. On Wednesday he had to write an essay on "Who is Your Role Model."

He chose his Dad. I am sure this is no surprise to anyone except Brian. In Ryder's essay he said that he could show his dad was his role model because he 1) Loves our family 2) Works really hard and 3) Always wants to spend time with me. It was a really great essay. It was interesting for me to see why he thinks his dad is great. In the paragraph regarding his dad's work he said wrote about how my dad has devoted his life to giving God glory and how his dad works harder than anyone he knows and never complains about it. What a great lesson! Since God loves work shouldn't our children see that our work is fulfilling and enjoyable. He also said that his dad is always willing to spend time with him. Just last weekend Ryder and I were having a talk about how some of the kids in his class either don't know their dad's or have been taken way from their parents because their parents were abusive. What a gift it is to have a parent who wants to spend time with you. Lastly (and my favorite part) he said in the first sentence to prove how much his dad loves our family that "My dad loves my mom to endless measures." I can think of no greater gift that I could give my children than to love their dad and for their dad to love me. It builds them up because they are a reflection of both of us. When I am loving their dad in a since I am loving them. I have had a theory that part of the way you help your children find good mates is to inspire them by your own relationship. Ultimately marriage is suppose to be a reflection of unconditional love of God. I know Ryder is only ten but I am encouraged to see that at least he see's an earthly example to "endless love." Maybe sometime when he feels like God's love might run out he will remember that God's love never ends either just like David did in Ps 100:5 when he said "The Lord is good and His love continues forever; His faithfulness never ends." Now that that would make a great mission statement of every Christian marriage.

Lights, Camera, Action!

Today a small crew (2 people) came to interview Brian, Regan and I for the Children's Miracle Network telethon. They came over and filmed for about a hour and a half. They will also accompany Regan to a couple doctor appointments so get some shots of her with some of her doctors. Regan did great. She was really awake for all of it and even sang a couple little songs. Pretty cool for everybody but Moby who had to stay in his crate in the van so we couldn't hear his yelping!
Regan had a seizure on Saturday and one today. So that is very good so far. We are enjoying the great weather here. And we all sing "Let the sunshine, Let the sunshine in, the Sun shine in!" Brian thinks it is cold because he was in 80 degrees all week in Vegas...poor guy! Ryder is taking ISAT's this week so he would appreciate the prayers. We did home church yesterday. Rylee lead the worship. She always does a great job. Ryder preached our sermon entitled "Will you?" He asked the provoking question will we drop our nets and go follow Jesus. He has also renamed the trinity the "trio" which is a very modern spin. And to all the grandma's no it was not on video.

Got Lemonde?

My sister sent me the funniest card...
"Hang in there...Sometimes life hands you lemons but then you make lemonade.
Of course, sometimes life pulls down your pants, runs a power sander across your naked butt, then pours lemon juice on your raw abraded buttocks. In that case a cool citrus drink wouldn't really help but darn it you've got to hang in there anyway!"

Too true. I have always thought it is funny how people think that if they had a child with heath problem they just don't know what they would do. I always say, you would just do what we do because there is no other option. Life goes on...drink more lemonade!

Regan has not had any more seizures but the meds are making her kinda zoned out. We will take that for now. (A lemonade moment!) Ryder is good. He has a week of testing next week so they are really prepping for that. This week he has really been working hard on the book he is writing entitled "The Seventh King". Rylee is great. Yesterday she put on a pair of pants that she thought were her cropped pants that she wears with her boots. She came out and they were way to small. The button was four inches from coming together. She had this shocked look on her face and said, "Mama have I really gained this much weight!" I asked her to turn around and I said, "Rylee those are Regan's jeans, I've been wondering where they were." We laughed so hard. Since they were Regan's they were short so the cropped leg was right but their size is about 5 sizes different. I told Rylee, "Every woman you know will understand how shocking a moment like that is.....normally we don't have a little sister's jeans to blame it on ..we did just gain that much weight!" Again..drink lemonade (maybe the sugar-free version!)

Seizure Free Day.

Well, today we had no seizures. Thank God! When I spoke the the neurologist yesterday he told me to up her evening dose of medicine. It helped but I am not sure how long this will last. For now it is good. She is happy and content. Julie is back with Regan in the morning. So, that will help. If she goes all night with no more seizures I will send her to school in the morning.
I took this picture this afternoon. My Dad's restaurant just got new T shirts so all four of us wore ours today. So we wanted dad to know we sported them with pride...Thanks!

Yesterday was a hard day...my girlfriends were working over time. Shelley's organizing meals, Mandy came for lunch, Marci came for tea, Shannon called several times to check, Jen brought dinner, and Tesha came and hung out from nine to midnight. I am truly blessed. Please contiune to pray for our strength. Thanks for all your emails and prayers. I can not express how much strength I feel from it.

they're back......

I don't have much to say but the seizures are back. She had two this morning before 8am. I have called the doctor to see what they want to do.

1. Please pray for Regan. Pray the seizures will stop.
   
2. Please pray for Ryder and Rylee they were both discouraged when they left for school. It is hard for them to leave her all day and not know what is going on.
   
3. Please pray for Brian since he is not here and that makes his heart sad.
4. Please pray for me. I must admit I had some hope this medicine might work. I had hope that they honeymoon period for this medication might last longer than six days. I am frustrated with the fact I can not help her.....
   

...thoughts from the mama

It is my turn to blog. Brian graciously handled everything while I was with Regan in the hospital. I was so glad to come home. As you remember two weeks ago I asked you to please pray a little more focused for the relief of the seizures. She had a couple days of relief. I believe that those days of respite were to hold us off from taking her in until this past week so our new neurologist would be on call. Last Tuesday was very surreal for me. I could tell by the way the doctor and nurses were treating me that Regan was in bad shape. It felt much like the first trip to the ER we ever made in March of 2002...only this time the world of blood draws, monitors, EEG's, and all thing neurology and pulmanology are in my realm of understanding. It is amazing what comfort familiarity can be. When all the nurses left and the doctors were seeing other patients Regan and I sat by ourselves. My cell phone didn't work so no one to call. I sat in a fairly dark rook watched her body strain to take a each breath. I stroked her hair and stared at her sweet face between the bed rails and rested my head there. I decided to pull my bible from my purse and I read....

"I love the LORD because he has heard my appeal for mercy. Because He as turned His ear to me, I will call you to him as long as I live. The ropes of death were wrapped around me and torments of Sheol overcame me; I encountered trouble and sorrow. Then I called on the name of the LORD; "Lord save me!" The LORD is gracious and righteous and God is compassionate. The LORD guards the inexperienced; I was helpless and He saved me. Return to your rest my soul, for the LORD has been good to you, for You LORD rescued me from death my eyes from tears my feet from stumbling, I will walk before the LORD in the land of the living." Ps116:1-9

I cried....I had not idea what the next few days would hold...It was good to remember truth. The truth that no matter what happened the Lord is compassionate, he guards the inexperienced, and he returns rest. He has done all of this for Regan (the innocent and helpless) before and no doubt he will do it again. He has done that for me (the not so innocent and helpless) before no doubt he will do it again.

Regan is doing great. She is resting well, breathing well and seems to be handling the new meds well. Brian's flight went well...even in Vegas he gets us at 4:30a. He called me at 6:00am Vegas time and was driving around drinking coffee...that is the man I love! Ryder and Rylee enjoyed a pajama day yesterday. I scrapbooked most of the day 14 pages! I think think this is called the land of the living....

Home & Hope

Regan spent much of Wednesday on oxygen and went through another EEG. But she improved steadily throughout the day and had a great night. Tonight we have some great news...

Regan is home and our hope has been renewed. She has been breathing well w/out oxygen since 2pm yesterday. Her lungs are clear (for her). And she still hasn't had more seizures. That would be worth a party all by itself. But there's more...

There are about four places in the country we'd love to take Regan for specialized Mitochondrial care...San Diego, Seattle, Atlanta & Cleveland. In each city is a special clinic with some of the world's leading Mitochondrial experts. At the Cleveland Clinic is Dr. Bruce Cohen, who has had a major hand in leading the United Mitochondrial Disease Foundation. I have been very impressed with his leadership, patient care and writings as I've learned more about him. But he's in Cleveland...and we're in the corn...484 miles according to Google...sorry Drew Carey, but that's just too far away. We can't bridge that distance...but now we don't have to.

We have met a new doctor in Springfield. He just happens to be a pediatric neurologist who worked & studied with Dr. Cohen in Cleveland. He has extensive experience with mitochondrial issues. And he has moved from Cleveland to Springfield--we're convinced JUST FOR REGAN! For us, meeting new doctors is often like meeting the Wizard of Oz behind the curtain...they turn levers, make a lot of noise & blow smoke but don't have a clue about how to help Regan's mito issues. But Dr. AbdelSalam may just be the real thing. He's already made some significant suggestions and changes to her care. He's been able to explain some things to us that we didn't understand about the way her body works. And he has a get-it-done kind of attitude. He's all about trying new things. His grasp of her metabolism encourages us. And his optimism is refreshing.

We're not sure what's going to come of all this. But we're home & filled with hope tonight!

EEG, ER, ICU & ???

If you look back, you'll see that on Feb 9 Regan's pulmonologist gave her a great report, saying he didn't need to see her again for 6 mos. On Feb 10 she began having major seizures that compromise her breathing. We have been doing breathing treatments throughout the day since then & dealing w/ seizures through the night. We have given her an "emergency stop-seizure" form of valium more than 4 times since then. But she is still struggling. Additionally, in between the seizures she has been "twitching" constantly. Finally, last night the twitches got severe enough where we decided to get her checked out.

This morning, Chantell took her in for an EEG (brain wave test). She was in "Status Epilepticus," which basically means her brain was in a constant seizing state. For most people this is an emergency situation after a 5 minute episode. Regan has been dealing w/ it for hours at a time multiple days the last 2.5 weeks.

She was taken to the ER to give her a different "emergency stop-seizure" drug, which worked! But her breathing was in bad shape. She was retracting (chest caving in under the strain of the lungs trying to take in a breath) badly and could not keep up her own oxygen-saturation rate w/out oxygen supplement.

She's in ICU for now while they try to help her. They've done a chest x-ray that looked OK...and other initial tests look OK, but her breathing is still an issue without a clear explanation. We're in a holding pattern for now, keeping her on oxygen & hoping for her strength to return soon.

Her seizures have stopped & started suddenly at other times over the last 5 years...we really hope we'll see a sudden stop tomorrow. That will be a big key for helping her lungs to do their job. Also, this "status epilepticus" can cause significant neurologic impairment. Her little brain can't keep this up.

Thanks for praying for her & for us.

Weekend update

Friday night we played some games and ate supper late. We were all watching "Man vs Wild" and Ryder and I noticed that Daddy and Rylee were asleep. What a cute pair they are. I am sure daddy was happy to have someone to snuggle with. So sweet.

A few months ago a family gave Regan a money gift to buy her bath seat. Since we got the bath seat for free we decided to use the money to install some much needed ramps in front of our house. Brian worked hard trying to find just the right ones for our family. He installed them on Saturday. They are awesome. Ryder and Rylee can push Regan outside with no trouble and I can do it much easier. This will really be helpful this summer when Regan is going in and out so much more. In the evening we also had our friends the D'Andrea's over for homemade Pizza and a family game. We played a round of parent's vs kids of "Disney's Scene It". Of course the parent's lost but we had fun doing it.

Sunday was Ryder's play that he has been practicing with his Drama Club the "Living Stones." They preformed "The Lion, The Witch and the Wardrobe" Ryder was the Lion "Aslan". He did an outstanding job. This pictures is with Ryder's two best friends from church Ethan Golden and Hannah D Andrea. They were both in the production as well.

So, that is our weekend in review..of course more happened but I would hate to bore you with all the details. Regan is continuing on her up and down trend. This week she will be home with me all day because Julie is heading to the Dominican for a mission's trip. So, it will be nice to have her with me.

Kidney Stone

Just thought everyone might like to see Regan's kidney stone. It is the size of a match head. She is amazing because she did not even cry....Sort of a weird picture to post. But sometimes it is just interesting to see what we are talking about. She slept well last night. Thanks for the prayers.

Companionship

Today before Brian left to "go change the world" as I call it. We had a great discussion about Ecclesiastes 4:7-12. If you have time today I hope you read it but I wanted to share a couple thoughts...here is a portion of it passage

"Two are better than one because they have good return for their labor. For if either of them falls, the one will lift up his companion. But woe to the one who falls when there is not another to lift him up. Further more if two lie down together they keep warm, but how can one keep warm alone? And if one can overpower him who is alone, two can resist him. A cord of three strands is not quickly torn apart." (4:9-12)

• I am so glad that I have Brian in my life. I praise God that he gave us each other. I feel it is such an honor to love him. I feel proud to be his partner on life's journey. I feel that God keeps me warm by having him to lie with..I feel strength to resist the evil one because of him and the strength of God (this cord of three). What a good return we have not only in our children but in our ministry opportunities.
  
• We also feel blessed by those of you who take interest in our life and intercede on our behalf. I hope you feel a good return. Thank you for lifting us out of the pit of despair that we sometimes find ourselves in. What a mess we would be in if we didn't have you as companions...we would be in "WOE."

Regan had a rough day yesterday. She did pass one kidney stone and was what we call "ticking" (small seizures) all day long. We kept her home from school Julie held her in the morning and I most of the afternoon and evening. Rylee of course had to get some time in too! I guess it is a way we can feel like we are "keeping her warm" because she can us holding her and then she can know that she is not alone. It is probably more for us than for her.

Today she is having a good day so far. I get to bathe and dress her for school on Friday's so I love Fridays a lot. I walked her to school (along with Moby). So, it was nice to get some fresh air. I actually took Moby on a walk today because he needs fresh air too! Ryder has his big play on Sunday. So please pray for him. Brian leaves for Vegas next Friday for his Week of E trip. So, please pray for him and the 35 students that will be going with him (more of that changing the world stuff).

Thursdays Thoughts

Interestingly last night I went to Focus (which is our LCC Wednesday Night Worship Service). I (along with three other staff/faculty) was asked to pray for students who wanted prayer. So for almost two hours I laid hands and prayed for those who wanted prayer. Students who were weak and feel separated from God or just students who wanted prayer. What an honor. I am strong believer in praying scripture for people..since it is truth and the ultimate will of God. So for two hours I basically tried to pray every scripture or biblical truth I knew that was applicable to them. What a wonderful blessing for me to remember what and say with faith what I know to be true.
It seems appropriate that all of this is going on as we prepare and enter into a time of Lent. Our family attended a Ash Wednesday service. We needed it. We need to remember all Christ did for us. We agree we need God's mercy.....What a wonderful season we are in as we anticipate Easter.
Regan had a long night and a rough morning. Please continue to lift her up. Even though today is heavy with seizures we know God is hearing us and responding. Yesterday and Tuesday were the lightest days she has had in a while. We are so blessed to worship the God that inclines His ear to listen. We rest in the words of Christ when we said....
"Blessed are the poor in spirit for theirs is the kingdom of Heaven."
"Blessed are those who mourn for they shall be comforted"
"Blessed are those who hunger and thirst for righteousness, for they shall be satisfied."
"Blessed are the pure in heart for they shall see God."
oh is our family blessed beyond measure......Thank you Jesus!

we wait

Regan was asleep most of the day. It was difficult to see her so asleep. She did not even wake up with Julie got her ready for school. She slept all day until about 4:30p then she started to open her eyes some. BUT she had no seizures. Praise God! Thank you for all of your prayers. I moved all of them to a word document and prayed them over her twice yesterday.
She did however have a couple seizures in the night..so please pray for that. Yesterday Brian and I both went to chapel and we couldn't find each other so we didn't set together but God spoke to us. The service was about the power of God's word how it brings about revival, gives us life, helps us cope. We also sang and read about how our help comes from God. How he does not grow weary. We are weary but he is not. We find strength from Him and in each other..Please contiune to pray for Regan. We know it is a lot to ask of you to be burned with us but we know no other way. Now we wait on Him.
"I wait patiently for the Lord, And He inclined to me, and heard my cry. He brought me up out of th pit of destruction, out of the miry clay; And HE sat my feet upon a rock making my footsteps firm. And He put a new song in my mouth , a song of praise to our God. Many will see and fear, AND will put trust in the Lord." (Ps 40:1-3) let it be so

....oh the seizures

Hello everyone out there in blog land. I just wanted to take a couple of minutes to ask you to pray for Regan's seizures. They are really ugly right now. They we are now into week two of these long and convulsive seizures. Last Friday I took her in for lab work and she doesn't not have any infections that could be prompting the seizures. You sorta wish there was, at least then you would have something to blame. Brian and I continue to be heavy hearted about her situation. It is frustrating to go from great news about her back to these the next day. We were saying last night as we were falling asleep that you just have to compartmentalize her different issues sometimes so you can rejoice in the good stuff. She is tired all the time. It is been days since she really smiled or was interested in a lot of activity. She needs relief. Only God can bring her that. We trust HIM to carry her through. Please pray for her. If you don't mind responding/commenting in the blog or via email a prayer or letting us know you are praying that would be great. I would like to post them on her board by her bed and read them over her. I know it would encourage her spirit to hear you pray or simply to know you are praying for her too! I love how the internet is a tool that God can use to bring us together even though we are states or even countries apart. I consider it a blessing from God.

John Mayer Concert

TOO COOL! He was so great. We loved it. Brian bought me John Mayer tickets for my birthday/Valentines Day! So much fun. We both love him and only a week after is big Grammy win. He is so amazing. He even played Brian's favorite song as the last encore song...really great way for us to end the concert. We enjoyed it greatly. Our friend Marci watched our kids for us. So, thankful to her for loving us enough to let us go be "us." Another kinda weird thing but sorta cool too is that Jessica Simpson was there. She and John date and so she came to the concert sat in the sound booth which we sat right next to. So, we "sat next to Jessica Simpson" during the Concert. We were literally 25 yards from here with nothing in between us but a metal railing. Sorta frustrating too because once people started realizing she was there they kept walking by...I took a couple of pictures of her. I posted the one when she was leaving. She was so close I could touch her...and we have the same coat (which Brian bought me for me birthday, too).Anyway is was great to see John and to celebrate his wonderful music that is the background of our life. Ryder and Rylee would have loved it. Maybe someday we can all go. I think John Mayer is the James Taylor of the new generation. There were people there from all ages and backgrounds. Similarly as James. So, it was great just wanted to give an update on how it went. I took more pics if you want to see them let me know.

Snow day Number 2

Snow day number two brought some sledding. Brian and the kids went out with Rob and his kids (Shannon went along to take pics). Thought I would download a few to the blog so everyone could see what fun looks like. Looks like the boys might get run over by to crazy girl drivers. Not all snow days are this fun. Everybody is back to normal life. Brian is hitting a very busy season so we consider these snow days a blessing. What a joy!

Snow Day!

We all went to bed last night praying for a snow day. God heard us and boy do we have snow! As you can see the drifts are very high and the blowing snow is awesome. You can also see that the Tao is missing from the drive way because Brian and Ryder are out driving in this! Rylee walked to a friends house to play in her snow tunnel. Regan, Moby and I are staying in! The big kids and daddy are planning a sledding outing later today with the Maupin kids if the snow stops : )

Please pray for Regan's seizures because they are really bad right now. This causes her respiratory issues because it is hard for her to get deep breathes during the seizures. She had one this morning at 2:30am that last until 3:15.....crazy. We love her so much and it is hard for us to see her suffering this way. Brian and I like to call these seizures "damn seizures" because they are worse that regular ones and they have no redemptive value at all...so they are one day going to be damned...so we say to each other....oh those damn seizures. Mostly it makes us feel better.

I think I'll do some ironing and finish organizing my new office (closet). Brian made me move my diploma to the closet/office instead of by the washer and dryer where it has been hung. I miss it there because as I am doing load after load of laundry I have a reminder that I actually do know about something else. Thanks to everyone who sent cards and stuff for my birthday.
I feel blessed by all the love. Brian and the kids made my day very special. Ryder took this picture of me on the morning of my birthday before church. I know my mom and dad will be glad to see me... I am looking forward to John Mayer on Saturday..."the big date!" I was glad he at least won one grammy! I just love singer-song writers. Here is a link to his site....love him! http://www.johnmayer.com
Brian and I spoke at a local college ministry on "dating 101" it went well. It is always a weird topic for us. But the students seem to be down with it..so that is what matters.

Rejoice!

Just wanted to update everyone on the doctor appointments. Great news...Regan's curve is better! It improved from 67% to 54%. So, right now now surgery. We will go back in three months and see where she is at then. Right now we think the brace is working. He also came up with the idea of shooting some botox in her shoulder and in the tops of her feet to help the muscle relax. The pulmonologist said her lungs sound clear. That is great news as well. For those of you who have been on this journey for along time know that we don't have many appointments that tell us she is doing better. Scripture tells us that we grieve with those who grieve and rejoice with those who rejoice. You get lots of chances to practice the grieving part..So today REJOICE!

the look of captivation...

I love these two pictures. They remind me that it is possible for two people to be fully captivated by each other. No one else matters. We need more of that today. More attention to who are standing/setting right in front of you. More attention to the needs of those around you. More attention paid to the fact that when you smile at someone you might just get them to smile back. Regan teaches us so much everyday. One of the biggest things is that you have to slow down to have relationships. Most people miss out of Regan because they don't take time to get to know her to to slow down long enough to wait for her response. We praise God for the opportunity to live with her and know her so well. Her life is a constant reminder to us that no relationship can be rushed. They need time and attention which sometimes leads to a relationship that captivates you. You know the kind of person you can just listen to or talk to or sit with because they are just wonderful to be around. Oh, do we see God in those people.

Tomorrow is Regan's ortho appointment to talk about her back. Please pray for Brian and I as we pray and search for the best answer for Regan.

Intention

It is very cold here. My van told me it was -3 on the way to take Rylee to school yesterday. It intended to tell me a fact but really, if it is bellow 0 you don't need to tell me. It just makes me feel worse knowing that is in a - number. Rylee doesn't understand negatives yet. I found it difficult to explain. I hope her teachers do a better job.

I have a horrible bladder/kidney infection. I think Regan thinks I am a wimp...she is thinking, "Mom how about 14 kidney stones!...now that is pain.....get over yourself!" Even Moby feels bad for me. Brian took care of the kids this morning so I could sleep in. What a jewel of a man he is, I intend to keep him FOREVER! Julie is here now with Regan. We are keeping her home this week because we are so nervous for her to be out in the cold. She hasn't left home since Saturday.

I enjoyed some reading yesterday...since I was in the bathroom so much. If you haven't read Dallas Willard's latest book on Spiritual formation you should. It is jewel "The great Omission". Brian and I are reading it slow together. In the book he quotes my favorite writer Henri Nouwen "nothing conflicts with the love of Christ like service to Christ." This is so true for me. This quote got me thinking (because this is different that where he went with it). The very thing I "do" for Christ can very easily make me feel like I am earning Christ love/grace. What a paradox that God gives us service...this forces us to let go of the earning mentality. Simpling resting in knowing Christ loves us will only come through intentionality.

Listen......what do you hear.

Today we decided to stay home from Lincoln Christian and have church at home. Our meditation was on listening. We sat quietly and listened to the sounds in our house. Then we plugged our ears and listened to "the stuff moving around in our brain" as Rylee called it. We could not hear the sounds of the room because we closed our ears to rest of the world. We were totally focused on our selves. God wants us to Listen....to him, to what is going on around us, and to what is going on inside of us. This is our primary job as believers. To listen so we can love him with all of ourselves and love others as well. All great!

Awaken is over...it went great! The team did a fantastic job and the girls who attended loved it. Praise God for his faithfulness in all things. I am sore today from our jazzersize to "Manic" and "Let's get Physical". I add my "flash dance" costume on....very scary but the girls loved it. Thanks for all of you for all your prayer and support. Brian moved my desk to a closet in our family room this weekend. So, it frees up some space in our family room. Great because we needed it. Brian went and bought a chair from the second hand store from $35 it is great. Not the coolest but still great for $35...it feels great to live inside what you can afford...it makes me proud of the chair. It fulfilled one of Brian's dreams for our marriage...for each of us to have our own chair...amazing you could make a dream happen for only $35.

It is very cold here. Regan's breathing suffers from it. Could you please pray for her. Also pray for us to not catch the flu. Lincoln is really suffering from many cases of it. I am even considering keeping everyone home next week until people get better. Many of our friends have had it and it would be bad if Regan got it. We are having a party tonight. It will be great fun! Ryder loves the Bears so i put the type orange and blue to support the Bears even though they probably won't win.

choose this day!

Today was Regan's urology appointment. We arrived at St John's at 10:45 for an 11am sonogram and xray. Then the appointment started at 1pm. This was on of those days where you can tell from the very beginning that nothing was going to go right. I decided early on that NO MATTER WHAT I was not going to get mad. I knew the evil one was seeking who he was going to devour...and today that was ME.....sorry not today! So the worse it got the happier I became. Regan and I just put our heads and kidney's forward and took whatever blow the evil one choose to throw at us. Needless to say it was a fun day! There is not enough room in the blog to list all the attacks. But one funny/favorites was an x ray tech who actually asked Regan to hold her breathe while she snapped the x ray!!!! Are you kidding me? This was one of those days that you just CHOOSE who you WILL serve...as for me and Regan ....we serve the LORD!

However the sonogram and x rays showed that she is did pass two of the stones that were in her kidneys so we are down to two!!!! Yea!!! We will have to go back in six months to check again. We have been off the medicine for a while that we think was causing them. So, hopefully no more will develop.

....off to listen to my class downloads...not as exciting as it sounds...

,,,,,,,,are you awake????????

AWAKEN is on its way! The All high school girl event that I help to plan is just a few days away. Will you pray about that for me! I believe so much in this tool of the Lord's. I feel stressed about about all I have to do not only for this but also for my class and our parts of my life. I know that it will soon be over but it will be a lot of hard work to get there. Fortunately hard work is one of my favorite things! Rylee is planning to attend with me so that will be some fun time for her too! I praise God that he has given me this ministry to be a part of. I love the chicka's that I work with and even more so I love the ONE who awakens my heart to all things. His passion for me is a gift. It fuels me to love more deeply and breathe grace as often as HE does.

This morning I am reminded that he fame continues be awakened through the whole earth. I received word that my sweet Megan (who's been in my SFG for three years) is finally on the move. She has been stuck in southern part of her Guinea for two weeks. She is awaiting peace from the riots so they could more to their destination in the northern part of Guinea. I have another dear one who of mine who is in China. She is spreading the Love in a blessed city. Shannon another of my SFG girls is planning her life in Niger Africa. As well as one of my dear friend Becca who just returned home from Uganda. Even as I write this tears run down my face as I think of the Love of our FATHER being spread to those who need to hear. The evil one has lied and JESUS has come to AWAKEN us to His light. This morning the song that says "How Deep the Father's love for us (all over the world)...How vast beyond all measure...that He would send His only Son to pay my ransom.......Now if that doesn't awaken you to the passion of the Father I don't know what will.......oh how sweet He IS!

Please pray for Regan's breathing...she is very congested.

Growing up in God's presence.

I love Friday's for lots of reasons. The first is that I get to get Regan ready for school. Brian and Ryder and Rylee have "Donut day with Dad" on Fridays. So they go to the donut shop with all the old guys before school. Julie doesn't come since I don't have to take Ryder and Rylee to school. So, Regan and I get some extra time...I really enjoy it. Today we gave Moby a bath too! I also love laundry and I do laundry on Fridays. I feel like the air is full of hope on Fridays.

I also love them because it is when the weekend starts. On the weekends our family spends time together. I love it! Sometimes we doing stuff but almost always we are "doing" it together. God made us to live life together. I love that about Him. He did not create us to live on a island all alone but in community. Our first community is our family. Even Jesus had one. 1 Samuel 2 says that "Samuel grew up in the presence of the Lord." Even though he was away from his family he lived in the temple with Eli and his sons. I pray that our family say infants in our dependence on God but that our faith matures (grows up) in the presence of our awesome LORD. We are all growing up in God's presence together. I pray that is true for you too!

Regan is well...a little congested but well. She has a kidney appointment next Wednesday. So pray for that. Also, Brian is speaking at a Mid winter retreat this weekend for high schoolers. Please pray that they will have hears to hear and Brian brings a word from God. I get to go with him tonight. That will be fun...sorta like a date.

God's Word....

I just want to say something about God's Word....it is amazing to me. I do not know how to understand that something written so long ago and something that is so divine can be so simple to understand yet such a mystery. This paradox is huge to me. Today I am unable to grasp it. I Praise God for it. I know left up to human hands we would have totally messed it up. Yet he has entrusted it to those who wrote it and those of us who read it and want to understand it.

Regan is still wearing her brace with no trouble....Brian and I agree this can only but God. She and I are going to lunch today with a girlfriend. I thought since she is in such a great mood and laughing a lot we should take advantage of it and have lunch with friends. I took this picture a couple of days ago and it is not a great photo but so cute of her laughing....

Ryder and Rylee are had at their Math-a-thon for St Jude's. They love helping St Jude's and Rylee loves math so it works well. I am sure some of you will be getting calls for sponsorship. Brian speaks at a retreat this weekend so we are already missing him. I am practicing my Hebrew alphabet. Rylee said, "I looks like you are in kindergarten!" I said, "I am!" Julie is a Hebrew expert so she wrote a children's book about Hebrew she is going to loan me...and this is master's level work? Blessing to all of you.

Lord have mercy!

This morning I went to chapel at LCC. It was on how we are unholy but God is HOLY. So while we were worshiping together it occurred to me how much I try to do on my own. I am a "dooer" so I often fall into a pattern of trying to show God how much I love him by going and going. I do it as worship but sometimes I am distracted from my dependency on God because I am doing too much in my own strength. This morning and last night at bible study I was reminded that God wants my dependency in big and small things..with my sin and righteous acts....with small step or big ones. Regan is a great reminder of what that looks like and what a joy that kind of life that can be.
Regan has been laughing and smiling a lot for the last couple of days! It is such a blessing. Rylee is not feeling great but we are trying to put her in bed a little earlier to try to keep her rested. Ryder is great.

Cool pic of Rylee!

So it Rylee's turn! We had a great time. This is one of my favorites. What a pretty young lady.
Her smiles makes me smile. It was a little sunnier so they look different but still great. The kids got their report cards Friday. Ryder got all A's and Rylee did great too (she doesn't get letter grades yet!). We are proud of them.

Regan had a really tired day yesterday. She has been more awake today but We think she is having some seizure activity in her brain with not actually outside evidence. She is still a little out of it. he is wearing her brace for 8 hours with no marks....thanks for your prayers! Right now she is awake and looking at the computer while I type. We spent the afternoon watching the football game with Rob and Shannon Maupin while the kids played in the snow and leggo/dollhouse . It was fun...go Bears!

Cool pics of Ryder!

I took some pics of Ryder today. This picture is so him. There are lots of great ones but we thought this one was great. I just wanted to share a joy in my life......If you are interested in seeing them all send me an email and I put you on my Snapfish account!

Regan's Bath Seat

I thought I would put up this photo I took today of Regan's seat. She really liked it. Julie is sick so Regan stayed home with me. It was a great day for us. She did have four seizures in the last 24 hours. So please pray for this. But she is happy.....

Baby It's cold outside.....

Today is a cold Illinois day. I dislike them greatly! Regan did not sleep great last night but mostly we kept having to get up because her feeding tube kept getting clogged. It is compounded at the pharmacy. It costs $980 a month...you would think it would be ground fine enough but this month it was not. Right now Regan is sitting beside me singing her song.....Now, that warms a heart like the month of May!
Just some FYI stuff: Rylee has an orthodontist appointment today. The big kids and I have church. I got a great surprise in the mail yesterday from my friend Michelle from TX. A box full of the cutest brown and pink material to use for AWAKEN. We are going to use them to wrap around the cute journals that they are getting. All the girls will love them. It even matches from ribbon we already had. Thanks Michelle!
We have been putting Regan's brace on her for about four hours each night. She is seeming to tolerate that. So please pray she will continue to do that. We were also given a bath seat for Regan by her OT! It was one of her former patient's who just out grew it. Awesome..because they cost about $500. We are also looking into some small ramps for our doorways so not having to spend the money on the bath seat frees up some money for that! Will you praise God for his faithfulness.
Brian preached a great sermon yesterday in chapel. He reminded us the God is building the city but we are called to pitch a tent and build an altar. For me this blog serves as an altar. So add some comments to how you have seen God be faithful and let it serve to remind us all that GOD is at work. (If you want you should down load the sermon from the LCC website.)

Breath Check????

So for those of you who haven't heard my new year's resolution is to breathe more grace. I feel this will help me enjoy life more and extend the hand of fellowship in a renewed way. I am hard on people....I expect a lot from those around me and often I don't walk in grace or give it the way I should.
This morning I was thinking and reading and journaling some thoughts on paper. I realized as I was in a gripe session about myself that I maybe I need to breathe grace on myself too! You know when you check for bad breath and you breathe in your hand so you can smell it. I figure I need to check to see if I am breathing grace towards myself.
Man I am hard on myself. I feel unable, incapable, irresponsible, and stubborn. So, I really need the Ephesians's spirit today and everyday. The Holy Spirit empowers me to take away all the IN's and UN's of my life.
Ryder and Rylee are well and Regan is hanging in their you could pray for her back and her chest. They need it. She is curved and congested.

MLK. Day.....

We have spent the last two days in Nashville visiting the Terashita's clan. Strong coffee, strong love and strong opinions are always flowing. It is just my kinda place. Some of my favorite conversations have happened within this relationship. So, glad to have them. I will post some pics when I get back. We are leaving later today. We have had beautiful weather here. We sat out on the back deck both days with no jacket! Regan had a hard day last night and cried for several hours. I awoke this morning and decided that it was time to get up when I had a dream that Brittney Spears and Lindsay Lohan had become Christians and they are asking if they could do workshops at AWAKEN. I was actually having a conversation with Brittany about it in my kitchen. Scarry! Then I cam upstairs to a cup of coffee and great breakfast....in other words hope of a new day. I love MLK jr. I am so happy that my kids are learning about him. I am so glad we have a holiday to remember him. What a passionate man. I love a dreamer.

Communion with God

Last night Brian and I got in bed at 9:30p. We were so happy to be laying flat in our bed. He fell asleep fast. He had a long hard day so he was tired. I laid there listening to Regan breathe. Those of you who have children or you yourself suffer from breathing troubles you will understand. But for those of you who don't here is an explanation of what you have to do. People who think medicine is a science are crazy... it is an art. You have to rely on all of your senses to know where you are. Sometimes clinical diagnosis are more effective than simply test (for those of you who watch the TV show HOUSE you will know this well). We learned this from Diane (our neurologist assistant she is a pro at at stuff like this) she worked in ER for years before moving to neurology she taught us that we have to feel Regan's chest, look at Regan's eyes and the coloring of her skin. We should also look at her chest and listen closely to what the breathing sounds like. Even the Ryder and Rylee have picked up on some of it. When Regan coughs they will say "Good cough!" We have an machine that helps us know what the level of oxygen in her blood stream is. So, yesterday and last night she was doing poorly. All your senses told me this was not headed in a good direction. At midnight I got up after laying listening to her sleep and breathe but knowing I couldn't have a treatment until midnight. I put her on the oximider and it said 90%. So, I decided to let it go since she was resting and if in the morning it was not better put her on oxygen. I went to bed and meditated on the fact that God is in communion with God. He never leaves her, falls asleep, makes the wrong call, ignores, and knows the ins and outs of breathing perfectly (since it is his breathe anyway). When I woke up this morning I put the oximider on her and she was stating at 99%! Excellent care by the Great Physician. Tonight she is fussy again and He knows why even though we don't. Amen!

Isn't it great being a girl!

Today I just can't get out of my head how great it is to be a girl. I know we complain a lot about how hard it is (having periods, PMS and babies) but really I'd much rather be a girl.

• I love it that we can be mushy and everyone says "It's a girl thing"~ Yea it is a girl thing and it is great! Even the men in my life are mushy with me. Girls do that to boys you know! Brian is mushy, Ryder is mushy, My daddy is mushy, Gary Terashita is mushy...even Moby my dog is mushy. Today all of them gave me encourgement through telling me they love me..their girl..in their own special way! I just don't think guys do that with each other.
  
• I am planning a retreat for high school girls at the beginning of February. The planning team is made of all GIRLS! We love it. Our theme for this year is "AWAKEN the Passion." Our color palate is brown and pink. I have been emailing and phoning with this team all day. They love to use there gifts to honor Christ. They love being girls who are gitty over pink and brown lunch bags! I just don't think guys care what kind of bags their lunch comes in. But these high school girls will notice and they will love it!
  
• I love my "chickas" (other wise known as girlfriends!) They ask how are you and mean it. They give me pats or emails or phone calls just to say .....glad your my friend. I just don't think guys do that on a regular basis. Someone has to die in order to get them in touch with their feelings.
• I love my two girls. Rylee lied this morning. I busted her playing dolls in her room when she was suppose to be dressing for school. I asked her why she wasn't dressed and she said it was because she was "going number II." Okay I am not blind or stupid so unless she is a dog she is not "going number II" in her bedroom floor surrounded by her baby dolls. So, she finished getting ready and we cried together and she asked for forgiveness. I forgave her...then we hugged and cried together and all was well. I just don't think guys do that!
  

Okay I will declare it from this blog "GOD LOVES GIRLS!" All the kids are great. Brian is in meetings all day. (Yes Kim I know I am rambling on so I will stop!)

Just a normal Monday!

I spent the day trying to get my photos down loaded onto Snapfish. Looking at all the pics makes me glad that I have such a great family. Regan had a seizure today but over all had a good day. She was "deliriously" happy at school according to Julie. Right now she is watching Rylee do cheers to memorize her spelling words. Give me a S-I-G-N! Don't forget the "W-R-I-T-E" Go Team! She is something! Regan simply thinks she is great!

Ryder is at drama practice. He is Aslan in the January production for the Living Stones. Brian has a lot of meetings this week. Regan and I went grocery shopping today. We spread a little love all over Lincoln. It's tricky shopping with her. I will be glad when Mellisa (my afternoon helper) is back. But it is fun to take her out. Regan is a constant reminder of contentment.

This past week I have been thinking a lot about how important it is to know the full character of God. We can't know exactly what Jesus would do in every situation but we can know his heart for us and those around us. I am comforted by knowing that He knows me too! He is not hung up on each little mistake I make or each little success I have. I knows ME! He sees my heart. He knows you too! The heart is the heart of the matter.

There is just nothing like a sleeping baby!

Thanks to all of you who have been praying. Regan did sleep last night and I know the rest is God's gift and your prayers have given all of us strength to arrive at this moment with hope.

I inserted a picture of Regan with her Grandma Vera resting....appropriate for today.
Regan did go to school yesterday. She had a great time playing with her friends. Her Occupational Therapist hooked up the "Polly Pocket" mermaid set to her switch and she entertained all her classmates. Each time she hit the switch with her elbow the mermaid few up. All of Regan's classmates where cheering her on to "hit it again Regan hit it again."
They missed her and they were all glad she was back!
We are concluding from this that it is probably a kidney stone that has been causing the pain. Now we are watching for one to appear sometime today or tomorrow. Diane' our neurologist assistant called last night to find out how Regan was doing. God's comfort is felt through this medical professional (one among several) to travel this journey with us.

Rylee spent the night with a friend so Ryder and Brian watched the latest X men movie. I worked on Kim Terashita's birthday gift. We are planning to go to Nashville next weekend since the kids are out of school. So, I want to take it with me. Right now Ryder is watching the history channel with Regan while I type this. He keeps saying "now that is the problem with scientist." Funny boy! Brian is finishing teaching his last day of his class (which has gone great!) Rylee is still gone to her friends house. We plan to attend the LCC basketball games today and have dinner with our friends the Maupin's.

It's foggy out there.

It is a foggy day here in Lincoln. That is what my brain feels like....like I am in a fog. I thought I would give an update from yesterday. I am never sure who checks in with us but just wanted I thought an update would be good. So, I was on the phone most of the morning yesterday trying to figure out what to do. She stopped crying about 11am or and that hung on until about 10:30p-2:30a she cried. It drains every bit of energy from me to hear her cry and to be able to do nothing about it. Since my brain is not working well this morning. Thankful Julie is here to help. Regan is in a good mood/not crying this morning. She is bathing her and giving her a breathing treatment. We will see where that leaves her. We are just going moment to moment. I guess you could say we are traveling slow down the road today...the fog makes it hard to see in the distance but sometimes just seeing what is right ahead of you will do.

Some things I am praising the Almighty for:

1. Julie's ministry to Regan and myself.
2. My friends who help with Ryder and Rylee when Regan is not doing well. They always do whatever and usually say "could I also do this?" I love them.
3. Brian, in an act of desperation, emailed and phoned messaged three of the top mitocondrial doctors in the nation yesterday. One called back last night at 7:30p. He spoke with Brian on the phone for about 20 min. WOW! And it happens to be the guy Brian respects most. They talked about Regan and different issues we are faced with and what his advise would be. He knows Mito disease and he is the best patient care/mito doctor we have heard of.
4. Thankful for Ryder and Rylee. Ryder said yesterday, "Mom I have to tell you that I did worry yesterday at school but I tried not to worry too much." I should try that sometime...not worrying too much. It sounds like something Jesus might say.
5. I'm thankful for this picture of Regan because it is a source of light for me today. I hope it is a source for you to. This was taken on Dec. 26th driving down the road on a clear sunny day. What a smile!
   
6. I am thankful for Brian who can't make Regan better but keeps me from going of th deep end.
   
7. I am thankful for Jesus who renews me even when I don't feel renewed.
   

Hard day today

This is an old picture of the girls but I love it because Regan's hair is "don kingish." Regan is having a difficult day today. She is crying and we don't know why. Rylee said this morning "I know she is trying to tell us what is wrong." This is nerve racking for the other kids to go to sleep and wake up with her crying. She did sleep some last night but it is wearing on our hearts to hear her cry. I am comforted this morning only the God's promise that when we sow with tears we reap with gladness. Only in God's economy can that be true. I am sure Regan has storehouses filled to the brim with gladness at this point.

Part of the issue here is that we don't know what it is. Sometimes when we take her in they find something but sometimes they don't. Usually when they find something Brian and I already knew that what they would find...ear ache, kidney stones, dislocated hip etc.... I am giving her Tylenol with Codeine and that seems to help some. I have calls into three doctors and am waiting now to hear back from them. Julie is setting with Regan. God's bless Julie....I don't know what I would do without her.

• Please pray for God's wisdom to be increased in Brian and I and all the doctors as we try to figure Regan out.
  
• Brian is teaching all morning this morning and Ryder and Rylee are at school would you pray for them to give the burden of this to God and be present where God has them this morning.
• Please pray for all of us to be comforted through many tears and heavy hearts.
• Please pray for God to heal Regan from this pain.

Today I proclaim COME LORD JESUS COME!

Happy New Year!

We are finally home....it is true there is no place like it! We drove back from KC on Sunday and celebrated in the New Year at home with our sweet family. We made homemade BBQ chicken pizza and Rylee made her famous brownies. It was a great night . We played lots of games and watched Dick Clark's Rockin' New Year!

Brian and I also celebrated our 12th anniversary on the 30th. Grandma Vera and Papa Ray watched the kids and Brian and I went out for coffee and dinner. It reminded us how important small times away with no kids makes a big difference. We were like newlyweds. We continue to feel blessed by our marriage. We love each other more deeply and sincerely than ever. We feel God has set this up for us as a true gift of grace!

Last night we had our friends the Maupin's over for nachos and football. It was great fun and they didn't go home until after midnight thanks to OU's overtime. Shannon and I enjoyed visiting while the men watched the game. The kids played and it was a great time. We are thankful that God has brought them to Lincoln and to the LCC family.

The kids start back to school tomorrow. Brian started back today (he is teaching a intesive week class this week). I don't start back for a couple weeks. We aren't ready for real like to start back. We like being together too much! Regan is having some back pain. Will you pray for her to be free from that. We will be making some decisions early this year regarding what to do with her spine. The brace is not helping and she has increased her curve by 12% in only 8 weeks. This is very disheartening. Her ear is healing well, thanks to all of you who have been praying for that.

We learned a few years ago to not try too hard to figure out what the future hold. God's desire for the Mill's family seems to be "hold on and remain faithful." We know that this year will have lots of common everyday days and many surprises but God is in all of it.