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.