Leading us to Prayer,,,

This is Chantell....

Regan has had a stable day today. She is currently laying in bed with her daddy standing over her saying, "Donut I'm so proud of you." Regan replied with a coo and a big smile from behind her bipap mask.

Ryder and Rylee are at a movie with Grandma Vera (Brian's mom) and Nana (my mom). We are really glad they are getting get out and having some fun. All of this is very hard of them and they needed a break. My dad and Brian's step dad Ray are watching basketball. Grandad (Brian's dad) and Granny (Brian's step mom) are MIA but we think they are having dinner somewhere.

Brian and I have just ordered Thai. It is pouring rain outside. Brian's not to happy about having to go pick up our food in it.

Today we moved to room 8 in the ICU. This room has a bathroom and shower in it. That helps a lot and it is closer to the family room. One of the nurses here just brought me a warm seven layer cookie. (Now that is above the call of duty). Regan is steady today. It feels good to not have to think we took another step back today.

This morning I was visiting around a table with the some dear friends of ours from our family here at LCC. I was telling them that we let Regan lead us in prayer at home when we eat. We know that her communion with God is so strong so we love when she prays for us. Some people might think that is weird but we know that Regan talks to God. Her body may have a disorder but her her spirit does not. Now it is amazing to watch Regan who has never spoken lead people all over the world to prayer. And these prayers are not silly prayers. These are sincere prayers that touch the heart of God...thank you!

The Image

Headline Update for the caring but busy:

Today was a rather boring, status-quo day until around 1pm. I moved Regan to her wheelchair for a posture that would support her back a little more than the bed she's been in all week. As I drank coffee & read next to her she had some difficulty w/ her oxygen levels. Within an hour, her system started to crash quickly. We put her back on the bed, increased her oxygen and began the external ventilation we were doing on Monday. She responded well and has settled down. But we have taken a few steps back today. We're praying that this non-invasive support will give her a chance to gain some strength so she can breathe on her own soon.

We'll probably be staying in Springfield for a few days until we know how she'll do.


Reflections for the Musers:

We received another load of cards today. The girl from the shop downstairs handed them to me w/ an inquisitve look in her eyes. As I watched them pan around the room, size me up & finally land on Regan I could tell she was trying to figure out what was so special to so many people.

Chantell, the kids & I know that look well. We see it in peoples' faces all the time. People tell us far too often that Regan is "special." Being the cynic I am, the word usually drips of sentimentality and sticks to me in an unpleasant, messy sort of way. (Sorry! It's my problem, not yours I'm sure.) I think the most special part of Regan is not really any different from you and me...it is the basic image of God in her soul.

That image is powerful no matter where you see it. It is captivating, endearing and impressive. It is stimulating and catalytic. It is affirming and challenging. And it's in all of us. The problem is that our fallenness hides it, abuses it, perverts it and uses it for evil. What God has given us we usually think is ours for our own purposes. What makes Regan special is not the image itself, but that she's better than the rest of us at revealing it. Her Godliness is apparent in her perfect humble submission to his will. Her Christ-likeness is understood in the way she bears suffering. Her fellowship with the Holy Spirit is felt in her gracious fortitude as she depends on his strength rather than her own.

Please remember more than this sweet little girl...remember the powerful image of God revealed in her weak human vessel. And don't miss the lessons she teaches. You have the same responsibility & opportunity to redeem & reflect.

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!