History

Journal History

Monday, December 31, 2007 7:37 AM CST

We've just returned from a wonderful visit with our family in St Louis.

It was so great to see everyone and to have some fun playing together as a family--PHASE 10!

Please remember Miss Hope today--today is her baby girl's birthday, Natalie.

If you would, pray for her.

Sunday, December 23, 2007 1:03 PM CST

Oh How I love Jesus, because He first loved me.

What a simple thought, true and real--one of my most favorite old hymns. He does love me in the midst of all my fleshly struggles, within the temptations brought before my weakness. . .He is my all.

This has been one of the most peaceful holiday seasons for us. Although, last week was tremendous and other changes which have taken place; opting out of EVERYONE'S race has been a major Victory.

Listening to incredible music from Handel to Harry Bellefonte has ministered to my quiet and often times dry soul.

So thankful for the faithful people who pray, care and give to us in ways I may not know, but God does.
Thank you for continued concern regarding Papa Virg; he is doing so well.

Now, to the business of a new pouch, some cuddling before baking three sets of cookies. A first for us here. . .food art.

All to give GLORY to the KING of KINGS
and
LORD
of
LORDS!

Thursday, December 20, 2007 9:57 PM CST

It has been an incredible week.

Life seems to move so slowly at times with other moments flashing by without notice.

Many changes are taking place. God has been moving pieces around and making our life's schedule right now look different; He has been really doing that a lot lately and I'm reluctantly and slowly giving up on control and the dependence of people pleasing.

Olivia has decided she wants to take dance class again. I think it is a combination of watching Kourtney give it her all and going to her friends' recitial earlier this month. The dance instructor and I finally made a connection and it is settled--I'm having to step way out of MY comfort zone--I can't even begin to imagine Olivia's, but in this I will take her lead. As I seek God. But He has placed healthy, Godly people in the puzzle.

I also received a kind email from her Knittin' teacher saying that she can be flexible about lessons (dance being on O's Saturday Knittin' days)--which more than anything made my day. Olivia loves more than anything, her lessons with Miss Betsy--and all that takes place in those moments. It has been such a great skill, outlet, therapy, whatever you want to call it--for her.
It is so ironic--how much she delights in skills of old--but yet depends on her life to be in the days modern medicine.

But knittin' and dance lessons are not cut and dry--which also helps with our life's schedule. So, if O misses a dance she can attend another day, and well, with Knittin'--it isn't the end of the world. Again, it is exposure, exercise--movements which I hope will help her motility, help her feel good about herself and grow!

David has changes as well which we are very excited and anxious to watch him develop. He has done very well in swimming and now has a new violin teacher. He and I both will be taking violin! Very fun.

Music is in the air here. I'm enjoying teaching both piano, working on singing and practicing flute and piano myself. We are studying Vivaldi right now--and David is learning one of his pieces for piano.

Singing at our church's Handel's Messiah was such a great learning experience for me. Being exposed to this type of singing was great--the kids both sang in the children's choir as well.

Tuesday ended up being a strange day. As I was preparing Olivia's line for a fluid ball her central line sprung a leak. EEEK. Olivia methodically walked us both to where her "line clamp" was and we called Nurse Gerry. Called the folks who were coming for art--(David's friends still could come since Daddy was here)--and off we went.

Gerry repaired it and 8 hours later we were home.

Grandma Lodgie came in that same night and Wednesday we recouped, regrouped and reclaimed part of the house.

Today we drove to Olivia's TPN clinic. She had a flu shot (yuk) and found that she still hasn't grown. No weight gain, and only 1 cm in height. Labs were drawn to see why. . .and I'd love (Thanks, Shelle!) to hear from any LONG term TPNers out there--and their growth stories in the single digit years.

As always walking into CCHMC is a tremendous time of reflection. I never want to take that place for granted--so many really sick kids, hurting families, scared faces, yet the staff--filled with hopeful smiles. As I was walking in to meet Mom and the kids, Auntie Rosella stopped me (she was there to visit with us) and I apologized for her having to wait. . .and she said,

I'm just sitting here counting my blessings.

Yes. We all have such different blessings, don't we?

We are not out to win the fastest pace race, but run steady and not falter.

Praise God.

Some through the fire, some through the flood, some through the water but ALL through the Blood.

Thursday, December 13, 2007 7:59 AM CST

Happy Birthday GRANDPA Jerry!

Yesterday was one of those days which could easily be erased.

I awoke with a neck kink--could not turn my head to the left and had incredible spasms if I moved my whole body the wrong way. Talk about discouraged.

I had hoped we would get much accomplished and have top it off with Cottage School.

The kids were so good. They kept me in warm compresses and played quietly with their knights--recounting what they had learned at the Frazier Arms Museum from the day before.

My neck seems to allow my head to turn much better today! Will keep on top of it.

Tonight we have our Handel's Messiah rehearsal.

A few nights ago the kids and I watch The Little Drummer Boy. I hadn't seen it since I was a kid, but bought it for the kids as I always loved the music. It was such a great lesson.

Olivia "looks" pale to me. Thankful that we go in to clinic the 20th, but even more so, because Mom will be there which means we'll see Auntie Rosella and Auntie JOYCE! I need to see good dear friends (wanted to say old, but mom sends this to them and THAT may not go over well. . .'SMILE').

Today was (it is 4pm now) such a huge relief. The kids and I accomplished so much. We are doing a lot of geography right now along with math. But the big thing was how we all worked together (although Grandma Lodgie was a distraction--:)
Her video chat doesn't work, but her phone part does--fun. Life, love, family. . .

Praying for Anne.

Tuesday, December 11, 2007 8:32 AM CST

It seems the sun is trying to shine. It has been several days (a month?--felt like it!) of rain-and as I hear there are those out in this country in terrible ice storms.

I must stop here and again rejoice in God's tender mercy towards us. Olivia is NOT taking Zelnorm, yet she is doing so well. I'm so pleased with how she is really taking over a lot of her "stuff"--she came to me begging for a clean Gbag yesterday! She was eager to "make" it herself as well.
She saw her friends in their dance recital this month and so wants to dance again. Praying that God will give her the right teacher--and this will be a good thing. Also, she really wants to learn the FLUTE! So, I've been looking for flutes made for little hands and arms. Fun.

But she is nibbling rather consistently for that we are so thankful, and although our rather NEW fridge decided to quit on us--and we've resorted to hit and miss eating--she's done well.

I'm so proud of David. What a YEAR this has been for him. In September when he had auditions for his first orchestra--his sister was in the hospital. I was unable to be with him, Dad had him and Robin took him to the audition. Like a pro he rose to the occasion. After he got in--the music was hard, little "teaching" in the beginning, he kept on--and learned ALL the music. He now understands what it really means. He has never had to work hard at anything--things come easy to him, but this with music far harder than his level--he got it! That and David is now swimming. We are not around water for the obvious reason (kids w/ central lines tend to NOT swim--infection!)--it was time. If David was to be a BOY Scout--he needed to learn to swim. He is doing very well in the water! I think being able to have status quo with Papa's first night home--the two of them alone--was a wise thing. David has his Papa back. November was hard here and I know so many other places--and although December here thus far has been a healing time, I pray for those who are grieving they too will have a special kind of healing.

I signed up for Cub Scouts this month. We are doing Scouts differently this year. Dave is working with a group one year older than David and I am not doing anything but helping out here and there. It was interesting to see David with his peers. He is SO loved and well liked and he is so helpful. Dave and he were teaching a new marble game and he ended up giving each boy 5 marbles out of his own marble collection. I think he has got it. Thank you, Jesus.

It was so fun to be with the boys, learning to keep it simple and fun. We did painting and singing both nights I was there. I told them, if you see me coming--it'll be art and music--and boy did we all have fun. Enjoying their boy energy--and watching them really try to learn to paint. I'll have to get photos.

Today is my all girls upper elementary art class. One of my favorite classes (THEY ALL are my FAVORITE CLASSES!)--doing linoleum blocks. . .excited to see their faces as they ink the blocks. . .

Truly !

It is a beautiful morning--fog rolling out from the valley--all viewed here from
Fort DeKold.

Thankful.

Continued prayers.

Friday, December 7, 2007 9:34 PM CST

Papa is home; he sounds good. We'll see him tomorrow as he will be coming down for David's first orchestra concert.

Dave has to work this week--:( But I'm sure David will put on his own performance for his Daddy.

Both kids are yet again, congested.

It is going to be a long winter; I pray an at home one.

To Jesus!

Tuesday, December 4, 2007 11:18 PM CST

Isn't it just like Him?

He makes the crooked straight. I was and still am crooked.

After having a rare night out with a dear dear friend--I come home to my daughter's arm wrapped around her Daddy's. Both fast asleep.

. . .

Papa and David went to Papa's house today. Midnight and Mordie as well.
Tomorrow Olivia and I will ride up and meet the "boys" to shop for all the needed foods, etc. for Papa's homecoming.

It has been just under a month that yet another life altering surgery took place.

I'm in awe.

Pretty much over everything.

To the depths of that valley--to the highest mountain.

To the fact that a mother mourns over the death of another son--my thoughts are with Anne and her family. My prayer is for comfort.

The mountain which Olivia for two months now has not experienced severe distention. She is NOT on Zelnorm. She IS eating.

I so want this time to extend--allowing her to be without all of that.

But I think about her nurse and doctor and how much I appreciate who they are to our family.

And to my support friends far away.

And to those who touch us daily on real life levels.

There IS coming a day. . .

Thursday, November 29, 2007 3:49 PM CST

Pumpkin bread www.caringbridge.org/wi/zachsam

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Tuesday, November 27, 2007 11:39 PM CST

God has a way. His ways are not our ways. And we can't understand it all--not now--not with our human minds.

I have long since tried to figure it all out; I rest in knowing that one day what I needed to know will be revealed and that which didn't matter will be washed away.

Zachary Ryan has passed away. I never met Zach, but knew of him through his mother's words on a computer screen--a Christmas card. Anne is one of those moms who feels it deeply--the living part--not the business of being busy, but the business of being. Being with her family--capturing the depths of life and cherishing it. She is one of the most gracious people I know.

Please, let us continue to pray for Heather's, Natalie's, Kyle's, Sam's and Zach's families. . .

There is coming a day.

Monday, November 26, 2007 10:09 PM CST

Papa is doing great. Tomorrow will be a big day as Dave, David and Papa will head up to his place--and Dad will drive his truck back down here. That will be a big--almost final step in his recovery--except of course lifting heavy duty.

He'll be back home after his last follow up next week. I'll miss my Dad. He is very good company and a great substitute teacher. The kids both are reading to him, and doing their math with him. He is a great help and support.

We are gearing up for something--Orchestra concert, December Scouts, Art classes, all sorts of things sprinkled here and there.

Olivia is doing so well. She is a knittin' machine and although has slowed a bit on the eating--she is doing really well.

Tomorrow is a trip to the art museum with the two Tuesday art classes--"O's group" and the all girls group. Fun kids, am excited to see what they come up with in their sketchbooks--such treasures!

Friday, November 23, 2007 5:46 AM CST

Thanksgiving Day.

It is different in each house around this country. Ours was quiet, peaceful--reflective.

So thankful to have Papa here and healing. He is eating more each day and stronger with it.

Olivia has ended her big feasting season, it may have been just for Thanksgiving Day. She could not stand to come to the table; our table is modest. I have learned to not make a huge deal out of a "meal"--when you have someone who sometimes can't stand to look at the food, let alone smell it.

But the preparation was fun. David peeled 12 POTATOES! Olivia broke up the bread for stuffing--it was so nice to have their help as we listened to their songs they are learning for Children' of the King.

Olivia has really put on mass, praying it stays with her. This is something for which to be thankful--and with no ZELNORM--we thank GOD for it is He and HE alone who sustains us.

We have our Cadbury to bury today. What a dear bunny he was to our family. I am sure the hens miss their furry buddy as well. This Spring we want to plant flowers around his little grave. It will make for a nice tribute to our bunny.

Please continue to pray for Zach. He is going on week 10 in the hospital, I believe, and 8 of those weeks in ICU. His mother has always been such a source of support and encouragement to me in this journey.

Wednesday, November 21, 2007 7:05 AM CST

Today is Papa's 46 staple removal day! YIKES!

We'll head to Madison to see surgeon then go check his house.

David and Olivia have been enjoying doing their own interest kind of thing--kind of unschooling in a way lately.

Olivia LOVES scrambled eggs and has been eating up a storm. When I looked at her the other day I saw that she really has put on good mass. We don't have TPNclinic until late December when Grandma Lodgie will be here to go with us.

Please remember Zachary. . .

Sunday, November 18, 2007 5:31 PM CST

The days are melted together.

We are afloat--not drowning, not quiet swimming yet-- not bobbing for air but comfortable, at peace on our backs feeling the Son on our lives.

Friday, November 16, 2007 2:18 PM CST

THANK YOU.

Doesn't it make the hard times of life SO much easier when you know people are praying--when you can see God's Work upon the moments of a day?

Dad is home today! After two very difficult days, he had a great night and is safe and sound in David's room resting with his faithful friend Mordie Bird.

Although the last two days were by far hard to see, it gave Dad and I a place to be alone and figure out "how to"-- I stayed at his house for 2 nights alone and God again revealed to me so much more about my Dad that will make his going home eventually to his 12.5 acres, chickens, peacocks and CATS, bird and Sweetie the community beagle--easier.

so thankful it IS Thanksgiving approaching.

Thursday, November 15, 2007 9:44 AM CST

FYI:

Had a full email but then Dave just called: O seems a bit warm--dark urine, etc. So, pray he can get her urine down to lab w/o a fever erupting and making things creative again.

Also, I'm up at Madison, spent the night at my Dad's so I can be here more easily. Dad had VERY hard day yesterday--it was the 3 step back thing--praying today is in the healing direction.

Thank you to my special friends sending precious messages to Papa--and all your help in various ways imaginable.

Sh
P.S. No clinics today--or? :)

All in His timing. . .

Wednesday, November 14, 2007 0:40 AM CST

Dave and David hung out with Papa today. He did his walking and Dave suggested a chair ride (he is the BEST at those!) which they did. But as Dad stated, he looks good on paper, but he really doesn't feel all that great. He said he would ask for some Tylenol tonight. I pray he did. He didn't call back and hoping that means he rested--and SLEPT.

He did have soft food. I know this seems like too much information, but a lot of it is my way of keeping track for him as well. His story. Mom did that for me during O's stuff--and she took pictures too.

Art day was productive. It took a lot out of me. Olivia got to visit with her friends for a time afterwards. And David went home with Keesha.

Tomorrow Olivia and I will get things ready for Papa to come home, grocery shop, and other few things--Dave will go up and be with Papa.

We are thinking Thursday or Friday at this point.

Thank you for your care--

Monday, November 12, 2007 6:38 PM CST

He is slowly walking. I got to walk with him today. He does well. I'm so proud of how hard he is working and NOT working (resting when needed).

We are looking SO forward to Papa being here. Understanding his new norm--COOKING for everyone.

On an O front--It hit me today. She is over her "cold" and she is eating like a normal kid again. I mean normal pack it down and not wear the Gtube. Such God given Gift for sure.

Tomorrow O and I will stay home; I have two art classes and hoping she and I will be able to hit the clay studio as well. Wednesday back up to Papa. Dave and David will tend to Papa tomorrow.

Thank you to ALL who have sent such sweet tender messages to Papa (VIRGIL CLAUSEN--MARSHA-you BRIGHTEN MY DAY!)--very nice.

Well, Papa's Midnight and Mordie bird are here. And Surgarbelle is all eyes on BIRD. We have an official ANIMAL HOUSE. 1 bird, 1 hamster, 2 rabbits, 3 cats and 1 dog. 2 Hens. HOW DID THIS HAPPEN? Fun.

Keeping my EYES on HIM--the AUTHOR and FINISHER!

Sunday, November 11, 2007 7:40 PM CST

Another day with Papa; David joined Olivia and me.

We had a very nice visit, with Papa and me both napping a bit. The kids played softly with their Star Wars Lego. They are so very peaceful being there with Papa. There are so unafraid--so different from how I was as a child. David was horrified when I took off Papa's O2 to wash his face--he alarmed that we should have asked permission from the Doctor!

Some glitches for Papa, but a lot of it "normal" for what he has been through. . .

I feel so blessed right now--God continues to show us such amazing perspectives.

Continued prayers for Zach and Maya. . .

Saturday, November 10, 2007 8:32 PM CST

After dropping David off with Miss Robin this AM so he could make it to his last IUS Sci class--O and I headed up to Madison.

I have to stop here and say that Madison in the Fall is most beautiful.

As we walked into ICU the nurse claimed Dad was going to be moved to the floor ASAP. But 2.5 hours later finally--lots of weird quirks in ICU; I was glad to get him out of that realm.

He has a low grade, UTI and elevated white count, but other than that--he looks GREAT. He only hit his PCA once and that was in anticipation of riding in the wheelchair.

I think his urine is a bit dark, but not getting worse, but slightly getting better.

Papa is a delight and more than anything I've enjoyed just sitting and talking with my Dad--as it seemed that over the last few months we've not--really connected like we usually have in times past.

So, isn't God amazing? And Olivia was again SO good--today. Hardly knew she was there; she did get to watch movies on her DVD player, but knitted the ENTIRE time. And we took a field trip up to Papa's to feed and check on everyone "inside" then a lunch at our fav downtown Madison eatery--and then a jaunt to get some home made chocolate. It was nice to take in the fall leaves, the crisp clean air--and feel, 'normal'--walking with the people with their parsals from the day. . .

Olivia is a bit pale--we'll see.

She and I have completed all 4 Volumes of Jonathan Park (David is behind by a Vol.)--and with it --have learned SO much more about God as Creator--

and. . . can't WAIT to hear the next. . .

wow.

P.S. Thank you for the eCards; they blessed an old man for sure.==and me too!

Friday, November 9, 2007 6:36 PM CST

Thank you so much for the prayers for Papa Virg! He did WONDERFULLY during surgery today. O and I prayed up and down the halls--over Papa before we left. . .it was such a blessing today was.

Dad's surgeon is good to talk with--easy to ask questions.

He is resting in ICU to be observed for a few nights. I have to admit, it is hard to see your daddy lying in a hospital bed like today--I've seen it before, but today was different. Major surgery for sure.

After praying and talking with Dave and Greg, I felt peace to come home with Olivia.

I want (need) to be there the next few days as they will be monumental as many of you reading know and have experienced.

Olivia and I had a wonderful morning with Dad before he headed out. We were able to spend fun time with him back in pre-op as well. The nurses were in awe over a little girl with a backpack, bag and knittin' FINGERS! I was SO thankful the allowed us to BOTH go back. Didn't even have to ask! :)

Thanks to Eldridge family for taking care of the David boy.
And to all who left messages--calling--dear friends.
Thank you Heidi for finding the eCard link--Dad will be so blessed.

I have to say I was so delighted to hear that our Kboys will remain in our midst as well as seeing photos from friends who were in a wedding. . .life keeps on moving along--and to be included meant SO much today of ALL days.

So thankful for a mom and a step dad who are so supportive. For my brother who will listen to me. . .and to Dave who will put up with me in my intense mode.

But Olivia really was the gem today. I felt as if I had a grown friend with me; only once did she mention something, but she prefaced it with, I dont' mean to complain. . .oh yeah, it was because she was thirsty. Kid needed her fluids.

Cover us in prayer for Saturday and Sunday specifically that Dad will not be discouraged and keep his goals--baby steps--not leaps. And that all who work with him will be encouraging and loving. Papa is both of those traits.

Thank you JESUS for changing Dave's work schedule around!

You ARE the Master Planner. . .

To Him I give ALL the Praise.

Thursday, November 8, 2007 8:10 PM CST

If you could please keep my earthly daddy in your prayers. What a special man he is to me; how much he has done not only for me, but my brother and all those children he taught over the years. He helped David and Olivia with their math today and I'm in awe how he can explain something in such a way that at 43, I'm surprised once again!

His colon is tired. That is the best way I can explain it and we are all of one accord. It is major surgery and all that THAT means. Right now Dr. G will try to pull the small intestine on down to the rectum.

I was able to have face to face time with the surgeon; I heard him speak via phone this AM. I'm very pleased with how well Dad is advocating for himself--I only had one other question which he did not cover.

David is staying with Miss Robin (that way I know he'll practice violin and piano!:) and O and I will head up early to be there way before they take him.

Dave HAS to work, STARTING Monday he is off for 9 days. We are going to hunker down over these next few days--make sure Papa is cared for--PAIN managed--etc. --and PRESS on.

If you think of us, please pray for Virgil Clausen.

And that O doesn't get sick. She has her big clinic/testing this coming Thursday.

--To Jesus--
forever
and
ever.
Amen

Wednesday, November 7, 2007 7:03 PM CST

Still awaiting Papa's testing--he has a bad colon--sounds like. Just pray we can be with him when we need to be most.

Thank you for your care.

Tuesday, November 6, 2007 8:58 PM CST

A Tuesday here feels like an old Sunday of days of old. Dave is starting his FIVE days on--which can be longer than long.

and with that--

We ask for prayer for Papa Virg. He is at Kings Daughter's Hospital in Madison, Indiana. We are awaiting results from testing.

Gear up--

Press on--

AND RUN the RACE!

Monday, November 5, 2007 6:23 PM CST

November is going to fly; I can just feel it!

We've had some new changes in the house. We were given a bunny who needed a new home. And just as I had thought, Cadbury needed to come in. When I went out to feed him today he could no longer hop. So now we have two bunnies--"Inkie" and "Cadbury"--both are sweet little creatures. The kids are really enjoying them both, not to mention Charlie who surprisingly is sleeping at my feet right now--he is usually on bunny patrol.

But alas, we have the sniffles and coughs again--been a hard fall in terms of those such things.

Looking forward--

Thursday, November 1, 2007 11:04 PM CDT

I look out into our valley and see so many flickering lights. How can it be so much just out my window.

Olivia continues to pick up speed. In reflecting I do believe all the face time with kids like her albeit, most all boys--she has taken on a new attitude regarding her Jbag being attached.

I asked if she wanted to put it in something, she responds with a little Miss Spit comment--"I just want to drag it behind me". . .

OK.

Like soldiers we gear up and move on to the next appointed battle of sorts.

Clinic is but 2 weeks away and before we see Dr. K she gets to have a "formal urodynamics study"--now this may not be a big deal, but to Olivia it is something she's never had--or if she did have it it was in the way back days--no one remembers (not even I) and that always brings forth the anticpiation factor. I dread it as I'm not too keen on the whole "urology" department, but Dave will be off during that time frame so we can make it a whole family gig.

I haven't reminded O, nor will I until maybe a day or two.

She had some incredible itching around her central line dressing--she was so concerned for her line. Asked so many questions regarding what it'll be like, how she'll know if she needs a new one--

Anyone out there willing to talk to a 7.5 year old about that? I told her I'd find someone who could speak to it--and give her straight answers.

Be blessed--God is right here.

Thursday, November 1, 2007 2:24 AM CDT

November--October is nearly over and here is NOVEMBER!

When I received the photos of the kids on the horse in an email yesterday it was such a a testamony of His Promise of His Faithfulness.

In praying for good friends for Olivia--I see that God has brought into our lives people who like us have experienced the Faithfulness of God. The realness of incredible hurdles, and in turn God gives them that depth perception that leads to compassion and empathy. They are human beings; they are not perfect but I can picture God's Hands as He weaves the fabric into the warp or pushes and pulls the clay to fashion it into a beautiful vessel. I'm in AWE of His complete care.

Olivia has been feeling so well, although the last 2 days she has been a bit distended and requiring Jbag and fluids. Nothing drastic, just life with Pseudo Obstruction. I reminded her that she'll probably need fluids tomorrow (tonight) during choir practice--now, granted this is with a group of children she will not know. She said, I know--I don't care--if I have to drag it behind me I will. If I have to hold it I will! She makes bags dangling and fluid balls (we had some fluids balls instead of bags and pumps--she loves them!) rolling almost fashionable. It is hard to explain unless you see it. As a woman would wear a boa around her neck--she twirls and almost like a dance with these contraptions.

My prayer is she'll be ready with an answer as I'm sure there will be comments--or questions.

See, I still over think such small things to most, and I know that whatever happens good or not so good--will be a growing process--it always is.

David is enjoying learning more on the computer and Olivia is into weaving!

Please continue to pray for our friends--we are so thankful to hear Zach is starting to "wake up"--and that his Mom has been able to be with him.

We ask God to keep Maya well for this upcoming season, and for Hannah Elise to feel better. . .and wrap His loving arms around--giving Peace which comes only from Him.

To Jesus!

Saturday, October 27, 2007 7:25 PM CDT

Our prayers continue for the people of California; Zach, Alex and their families.

This week although so much happening from afar, yet seemingly so close--God brought me to a place of thanksgiving, such thankfulness was deep into the joy of who I am in Him. No one can take that away--no one.

We had a great week of learning together, Monday's orchestra practice went well: David has grown SO much since his first meeting! It is such a real tangible way for him to grasp (in such a short time) what hard work can lead to. Tuesday, he had his first swimming lesson in the AM (Dave is off now on Mondays and Tuesdays and EVERY other Saturday and Sunday!) so Dave took him while Olivia and I stayed back as Tuesdays (twice a month) is her art class and then during the 2nd art class--Olivia learns how to sew from a very loving godly woman. It is such answered prayer.

Wednesday we had our friends over for Cottage School--pretty intense voice lessons, a math moment and science--(weather)--I am so utterly thankful that I have someone who CAN teach singing--but more than that--the CORE of WHY. . .to worship--to SING to. . .to sing ABOUT. . .the Most High.

Thursday was piano and violin lessons as well as O and her time with Rachel who is opening a whole new world to Olivia--it is time spent with friends and more relaxed day, but good and full.

Friday I had my older art classes. The oldest group of the four I've been with some of these kiddos now for 3 years? 4 years? Miss Kara's gift of a spider lily made my WEEK! It has beautfiul linear leaves. This group touches me in a way my first group at NBCS did. Dears. And then the 2nd class is SO much fun too--this is David's group. O is upstairs playing with a little sibling (girl!) and so it works out to be a great time for all. (IF YOU CLICK ON MY OTHER SITE AT BOTTOM and click on wwart--you can see one of David's drawings)

I love the art classes as I can get the main core of D and O's work finished (and then some) prior to anyone coming--and the they get art! It is working out well so far so good. PLUS, I absolutely LOVE to teach art; it is my hobby, IF I ever had one. To see what the children come up with--how MUCH they ALL have learned over the last few years--I'm encouraged and hoping that it will draw them closer to God and their families--slowing down, being quiet.

Saturdays are different depending on if Dave is off on working. If he is off he takes David to his IUS Mad Sci class then they do whatever they do--work on their model airplane, putter. Olivia and I are on week 3 of clay class and she has knitting every other Saturday. Soon Saturdays won't be as busy, but I like them full for the times Dave is working we do school.

I had a few people asking how our year looks--it seems full but not to me. (for me!)

Mondays we are home until 3:30--Orchestra. Scouts 3x a month So, O and I have Monday nights to cozy in! Keepers 1x a month
Tuesdays Olivia and I are home the entire day--David off to swimming in AM (art 2x a month)
Wednesdays Home all of us
Thursdays off to Piano at 1:00 PM/violin/Library too
Fridays Home all of us (art 2x a month)
Saturdays IUS (4 classes) Clay (5 lessons) & Knittin' Club (2x a month)

BUT those of you who do know this already and do not confine learning to a building or time frame--learning is 24x7 all the time, it all depends on what you want to feed your children--TV, Radio, BOOKs, PLAY, what is available to their hearts, minds, souls. . .to their bodies which are so badly in need of growing!

Having Dave home Mondays and Tuesdays has been different, very good different. Since David and Olivia were given to us; I've often felt like a single parent with a pay check--some may say--not a bad combination, but coming from the upbringing and wonderful childhood I had--it would not have been as good if it hadn't been for both parents playing a major role in my life. Dave's new schedule has afforded him to play a major part in the kids' schooling! He and David are reading stories together for a Book Club, they are working on a model airplane, Dave checks over the kids' math (especially) and is aware of WHAT they are learning--

It isn't coming home every night late--surviving--doing TPN (like a robot) and crashing. Very little during the week fellowship as a family--at all. Now we are able to have dinner together, discussions, knowing what is GOING on--as a family--having more family meetings--all of it. So good.

Medical Minute: It is a miracle. It is a God given Gift. Olivia has done so well WITHOUT Zelnorm. I have NOT felt a dark cloud of DOOM--of fear--of wondering WHAT is going to happen next--she has not had a gross distention in what seems like weeks. She is eating as much as ever. . .energy VERY good at times--she is happy--learning to CARRY to the hundreds place--reading--grasping things along side her brother about science. . .It is a Miracle. It is.

And in saying that I do not say it lightly--I believe it is God answering prayers of Grandmas, Grandpas, Uncles and Aunts--of a mom and a dad, of dear friends who faithfully lift up a little girl--not a perfect little girl--(And don't we ALL know that!?)--but a little girl whom GOD loves and has a plan for--as HE does for each and everyone of us--

Knock and the Door will Open
Seek and You will Find.

To Jesus--to Him alone, my Lord and Savior.

Friday, October 26, 2007 7:16 AM CDT

It seems our wind and rain have slowed--I can see the sun this mnorning.

We concern and care for Zach and Alex. Please include them in your prayers as well as their families.

Tuesday, October 23, 2007 7:54 AM CDT

It is raining in Southern Indiana, praying for those in Southern California.

Continued prayers for Zach as he slowly takes baby steps in the healing direction.

Tuesday, October 23, 2007 7:54 AM CDT

It is raining in Southern Indiana, praying for those in Southern California.

Continued prayers for Zach as he slowly takes baby steps in the healing direction.

Saturday, October 20, 2007 8:44 PM CDT

What a wonderful 1/2 birthday Olivia did have.

She and I raced up to Corydon for the annual (our first) Fiber Festival. I'm HOOKED! We met up with the Knittin' Club which is such a huge blessing for us.

We stopped and had a light lunch on the square then down to see Norm at the clay studio where we had him all to ourselves. He helped O throw FOUR pots and make other goodies and showed me how to make a HUGE pot using a plaster mold.

Dave took David to his first MAD SCI class at IUS and loved it and came back knowing MORE than his Mama (not a surprise)--they talked about AIRPLANES and made all sorts of paper airplanes and talked about the sci of it all.

Daddy took David and O to the park while I finished up during "studio" time--

Charlie is gonna sleep hard tonight!

I think we all will.

So it is official--7 and a 1/2 she is. Full of energy!

So thankful.

TO JESUS!

Thursday, October 18, 2007 5:00 PM CDT

This is a very full week--getting back to the outside activities and with a few added in which are either once a monthers or special events--all so rich and clearly good for the growth of children's hearts, minds and bodies.

Yesterday we visited 3 horses and each child had a turn to ride. A good ride, full of adventure--both David and Olivia loved it, but said they were SO SCARED! They enjoyed the time at the park afterwards which was huge--castle--it really was a good time.

Olivia is doing well. She is so enjoying reading, math and today made a popcorn pie for her teacher, Rachel. Rachel does the neatest things with O during David's violin lesson. They read good books then follow up with a recipe. It will be a treasure indeed.

David's new news is that he is following in his Daddy's foot steps building real life big time model airplanes--the kind you fly!

I am so thankful for the change in Dave's schedule; it allows us to be together MUCH more as a family. It would be so hard to go back to that.

With the wind change I heard the train in the valley last night blowing the horn long and hard--that and the rain-kept me awake--felt like I was waiting for the alarm all night.

Be safe--

To Jesus.

Wednesday, October 17, 2007 6:44 AM CDT

We are mid week into our fast paced out of the box schooling. With having had 2 weeks of INSIDE the box it is a nice change to be outside and seeing folks again.

Olivia continues to do so well! She needs extra hydration from time to time and is able to nibble along side us. Scrambled eggs are the fav right now, but I see it dwindling. The burnt toast phase seems to be over but not the SMART BALANCE--she craves it by the spoonful.

Olivia and I are back at the clay studio taking classes (THANK YOU GRANDMA LODGIE and PAPA JERRY!) so we were able to run over to do a few pieces yesterday after art classes here. I do see improvement on her structures she is building! She is prolific that is for sure. She does 8 to my 1!

But the REAL news is Olivia's sewing. There are two art classes on Tuesdays (2 times a month) here at our house. The first is O's group, the second an older elementary girl group. During this time Olivia receives one on one sewing instruction. It has been one of the biggest blessings of this new year. I'm so thankful that Mrs. Smith's (sewing instructor) daughter is such a blessing to me--and LOVES art class!

He so richly gives us the desires of our hearts.

To Jesus!

Friday, October 12, 2007 7:41 PM CDT

I really have to stop and thank God for the days we have had. Yes, the kids have had horrible colds (on the mend), but for the most part Olivia has done so well GI speaking small amounts of food, keeping hydrated with extra fluids, but I think that is more due to a cold than NO ZELNORM. She has been off of FLAGYL too.

In my own uncomfortable physical feelings I slipped into a pool of POOR me, (pity party?)-and thankfully God is faithful and TRUE.

Wednesday, October 10, 2007 7:02 PM CDT

Grandma is gone.
Had a wonderful visit with Grandpa Jerry. He is one deep guy.

Dave goes back to work tomorrow.
Both kids are still pretty congested, but getting better.
I on the other hand am experiencing (I GUESS?) some change of life symptoms which are NO fun.

O's hair is cut--will post pics after this weekend. Want people we love (who are close by) to see it first. . .in person.

Thank you--prayers continued for Zach.

We are looking forward to Saturday and Sunday.

Sunday, October 7, 2007 11:47 AM CDT

We are in survival mode of sorts.

David and Olivia are faithful to their neb treatments, writing down when they do ANYTHING for their health. It is really interesting what has taken place in the last 48 hours here.

Grandma's "lighted match" throat is better, but she is harbouring a cold. My throat is whispering and Dave never admits to anything.

On our way home yesterday David disclosed that he hoped he was well enough to go to ORCHESTRA! What a HUGE blessing. He is practicing even though he feels bad and is making great strides. Both are doing school right now--and David has enjoyed looking over Olivia's work and he is actually writing without moaning how painful it is.

What has HAPPENED?!

Grandpa Jerry is on his way to be with us for a few days then he and Grandma will make way to Texas to visit with family. I sure do wish we had more to offer him--like WELL PEOPLE--!!!

Soon we'll be home without Grandma, Dave's new work schedule warrants many days off in October which is almost hard for us to fathom. For so long we've lived weekend to weekend. We are excited about having MORE family time and time to get things ACCOMPLISHED here at our homestead.

But right now, we are working towards getting better--doing more each day.

BIG news is--that Olivia wants to cut her HAIR off. She will donate her hair, but not after I have a skinny braid to keep. I think Aunt Becca planted the seed--about the "BOB cut" after her last inpatient--then she saw some cute little girls' hair at David's Pack Meeting--! So, it'll be a nice change--less for me to keep up or to from feeling bad that I didn't brush or fix it--long, fine, hair. . .difficult--!

Continued prayers for Anne's children--Zach and her two girls who I am sure are just so concerned for their beloved brother.

And so thankful for time I got to spend last night on iVideo with my Brother, SisinLaw and dear Carolyn--to know Carolyn is to just want to SQUEEZE hug her all the day long. . ..

Saturday, October 6, 2007 12:08 AM CDT

Took D & O to Ped today.

Grandma woke up with a sore throat so wanted to have peace of mind.

D & O both are on NEB treatments--David has a schedule written out and Olivia is David's student. He set her up; she breathes like she is running a race while she does it. It is pretty comical. David is quite the doctor nurse in the making. Labeling the tubing, picking out wash cloths for drying the tops. Wow. Makes my job easier.

We've had good food and doing some make up school. What a blessing it is to homeschool; time for sickness--recouping no stress about making up work--nothing is a HAVE to at this point in our lives which really gives me a sense of

RELIEF.

David now has O looking at the artist fan looking for Claude Monet then Edgar Degas--to distract her from breathing too fast.

----

Anne updated about her dear son Zachary. There are small steps; we are in constant concern and prayer--and from looking at O's guestbook, Miss Hannie is doing fine--such a relief there too.

Looking out over the valley today--the shadows--the breaks of sun--reminds me of God's covering in the shadow and in the sunshine.

Rest dear Zach--may your body heal and be ready to wake up soon for your dear sisters and mother await you.

And to those who are constant care givers of their children young and old--my prayer is for a day of thanksgiving and rest to you.

For the beauty of the earth--is from Him and Him alone.

Friday, October 5, 2007 3:01 PM CDT

Yep! SICK DAYS again!

But we are all in need of a major down day.

I am chuckling to myself when I think about my "plans" for this weekend--I'm just SO glad that I didn't play ANY of it up to the kids.

I think O is going to be fine if she rests, maybe just knittin' club tomorrow--but David needs to rest and drink good juices and eat good foods.

GOd really is showing that I CAN deviate from the norm--from what is expected--and everyone won't fall apart.

PRAYING constantly--for Zach.

Hannah Elise and Kody too. . .

Kourtney too.

THANK you Jesus.

Thursday, October 4, 2007 1:55 AM CDT

Please pray for Anne's Zach.

Our time spent in Cincinnati was so nice; it is like going home to me--it is like seeing old friends. . .the skyline, Union Terminal and even CCHMC.

Tuesday we were able to have Papa and Grandma join us to see Roving Mars and The Alps. I had seen that they had one more week of showing at Union Terminal's Omnimax so we saw both--back to back! Then to see the amazing murals, the building itself warrants a visit.

Off to Vernon Manor--another favorite of us DeKolds. Old Cincinnati hotel, maybe one only someone whose roots are deeply planted in this city would appreciate.

The kids, mom and I had such a fun time playing games--David was so silly and alas woke with a sore throat and in a asthma flare.

We had a morning visit with Auntie Joyce and Auntie Rosella! Again, to see dear friends, nothing like it--sharing bagels and stories. . .

We popped over to Krohn's Conservatory and were pleasantly surprised to find quail in the DESERT room! This is one of my favorite rooms--that and the orchids--but the kids sat and "talked" with the quail for most of the time. What a TREAT!

I got a new small agave--one of my favorite plants and many pictures.

Clinic:
Still no Zelnorm. A glitch in wording will have it go back basically to the drawing board.

Discussed other this and thats, but O had gained 2 kg--which is good. I was glad to hear since she had missed 2 nights of lipids in the last week.

Had a DEXA scan on her bones.

Overall she is doing well. WE can't live in the--but she is distended, etc. etc. place--it is part of the disorder. We have a month before her Urodynamics study and next TPN clinic then a follow up with a new Doctor to discuss the Urodynamics. Things will change then, I'm sure.

Nurse Gerry is going to help us get the ball REROLLING concerning a wheelchair. It is apparent that she needs one on the big belly days. She is ALL for it, me too. Hard in some ways, but really over all--it is funny--how God totally clears the path for thanksgiving. So thankful there are such things--wheelchairs, pumps, bags, tubes, pouches, little girls who despite it all--wants more than anything to keep on!

Overall, Olivia says her tummy is a burden. It is that beyond bloated feeling which is tiring to her. I have seen her over the last few days very tired.

With David not feeling well and her increasing fatigue tomorrow is a very low, quiet down day.

On a great note, she and I started reading Black Beauty last night. What an amazing book--I don't ever remember reading this--it'll be more than a treat.

And her knitting--she is working hard on this project having had it destroyed by (I'm sure IZZA!) an animal.

She took her sewing with her to clinic. We both got lost in our work, I was reading up on weather--and she was sewing when I noticed she was singing a little ditty I made up--

North American, South America, Asia and Africa
Europe
Antarctica and Austrialia too!

The kids played in the back all the way home--sing song voices--both tired.

SO thankful to be home.

Monday, October 1, 2007 6:31 PM CDT

October didn't come in very nicely for Olivia.

She is distended and uncomfortable. I am amazed as to how well she copes.

Her 88 stitches for her 6 inch knittin' project got destroyed by kitties so she is working on it now. Knitting is such a blessing to her hands; keeps them busy, keeps her distracted, it is better than any drugs right now.

She did ask tonight after her shower if I thought she would be big again tomorrow.

We head up to Cincy tomorrow for museum time and hoping to see Auntie Rosella and Auntie Joyce--Olivia calls them the old ladies--in the MOST utmost loving manner--how could you not--

Keeping our dear friends in our prayers as they are struggling for answers and hope.

And for those who are desperately filled with sorrow from the loss of a precious one. . .

On the mountains and in the valleys--we will praise the Lord.

Saturday, September 29, 2007 7:20 PM CDT

We are home.

It was so good seeing everyone. Thank you.

COSI is one of the best Science Museums for kids I've ever been to--and today's Pumpkin Festival/parade and rides was fun too. Olivia was thrown a mini/baby stuffed dog which looked just like Conrad.

Dad has the most beautiful tomato plant growing by his rooster's pen; I think he should have put it in the "judging" up in Versailles.

Tuesday/Wednesday back on the road to Cincy for clinic and two cool IMAX movies--Alps and Mars Rover with Grandma Lodgie and Papa; we don't have clinics (urology testing and urology and reg TPNclinic) again until November--so I'm looking forward to some home/nesting time. Praying SO!

Schooling this fall has been different than what I thought it was supposed to be--but am I excited as to how it is all going.

More of a life style, hands on--unit studies--I feel our direction going that way--with no reservations. Now to pray and find God's leading to which area. We are going to study the Westward Expansion until Thanksgiving(ish). The Falls of Ohio will have some neat Lewis and Clark stuff going on in the next few weeks--O read her first biography about Daniel Boone; he had 10 children!

We are praying for Zach, Hannah and our dear friends without their children tonight.

Wednesday, September 26, 2007 4:57 PM CDT

Please continue to pray for ZACH
www.caringbridge.org/wi/zachsam

~~~~~~~
AND HAPPY BIRTHDAY TO SPENCIE:)

Happy BIRTHDAY to my mom--she and Auntie Midge are somewhere in Indiana making way north for Mom's 50 class reunion.

Please pray for Zach--he is out of surgery, but bleeding--and for Miss Hannah to feel better.

AND PRAISE the LORD--O's belly is DOWN! She had a FULL belly all day yesterday--she kept saying how when it is big it just weighs her down. But she and her brother have been playing this AM in her bed--and I saw that her belly is DOWN! So thankful--praying she'll really enjoy the time at Dave and Busters--just as Kyle did. . .and that tonight will be ground breaking moments all over...

And for my dear husband who didn't get home until well after 11 PM last night--thank you for your strength. Love you, Dave.

~~~~~~-------~~~~~~~

It is truly the last days of September.

We are gearing into a short jaunt north to visit friends and participate in an event being held by a new homecare company. Donna Noble asked if I would speak (bless her heart--does she know what she is getting herself INTO?) to Living Life on TPN. I have to say the last couple weeks in preparing the movie, looking back into the past at the beginning dark days--all of it, and then putting it to words. . .has been a shaping process.

I have to stop right here and thank God--He brought us through some pretty tough times. We were never alone, although we didn't have a support system built like we do now, but God WAS it--He provided those we so needed at that time and place. Mainly--each other.

I look back and I have a renewed sense of respect and love towards my husband who not only has always been a great provider, but a great dad--adventurer in this race. He would push the envelope in places I would not (like at the hospital) and I would push elsewhere (like traveling this country)--but to see his sleeping next to Olivia in the PICU bed just a day after her surgery. . .really speaks volumes. Dave jumped right in there.

And now although, I'd have to say we have survived the Dark Ages and on into the Adventure Stage--now it seems we are just old and tired!

~~

Into the now--the present. We've been pressing on with school and working on the house--yes, it has been over a year, but that is all right--it is a process.

Today, we went on a field trip to the local 4-H Club's meeting as they had the WLKY's Weather Class. A young Meteorologist came out and spoke to the kids--afterwards did a video pan back and forth of the group--Such fun--we JUST viewed it on TV. (Boy, now I remember why we NEVER watch local NEWS--whoa--YIKES)

But alas, Miss Olivia had the big belly, and went with Jbag. She had some stares by some kids--but the kicker was when we were walking out--a lady came right up to Olivia and me, snickered with her two children and asked, "What is under your shirt?"--Well, let me tell you this--I didn't skip a note, beat, tone, melodic harmony--nothing. I looked her and said,

She has a G and separate J tube and well, other things too, but I need to help my son--as he was being held by the neck by some older boys.

So, Olivia and I get into the truck--and she says, "what did she think I had under my shirt, TOYS?"

Come on people (I know not YOU people because you are well educated:), but if you see something different on someone--do you come up and?

I told O--she'll have plenty more times like this--and there are times where I would go up and ask that same question to kid--like at GI clinic--only with O standing right there ready to show hers. . .to help. . .to aide. . .to be. . .

BUT on a cute note--we were at a restaurant afterwards, and the waitress tripped over O's Jbag--(I have NO idea how THAT happened), but boy, was she on it--she didn't freak out like WHAT IS THIS--she was so. . .calm--brought the kids stickers, felt horrible, WE had a GOOD laugh over that on the way home--joking. . .laughing. . .

I was so thankful to be with my friend who gets it. SUCH A HUGE blessing.

So, that is our life--

We are praying for Zach (in surgery), Hannie (waiting on news) Mrs Steph (bad belly aches for two days), and for those folks who have been left behind--

who many on a daily basis tend a grave site of their child.

May they all be comforted right where they are--

Stay close to Him.

Saturday, September 22, 2007 8:07 PM CDT

What an amazing week.

God healed two babies this week. One here on earth and the other in Heaven.

We rejoice with our dear friends!

Please join us in praying for Connor's parents. Deb and Scott are amazing parents--and their son's love for God is so apparent--to see him praising God in a photo on his website. . .helps. It is not Connor we concern about now, but the family who loved him so much--left behind.

Connor's Mama sent Olivia a blanket 2 days prior to her last admit; we took her Connor blanket with us--it was such a blessing. A picture of God's love wrapped around her. . .

Olivia continues growing and learning despite bouts of a "pseudo obstruction"--she asked for me to take her Jtube out on Friday--of course, just minutes before leaving to pick up Grandma at the airport--10:30 PM. But it is such times which makes us only stronger.

Dave and David are at Cuboree with Cub Scouts--no doubt hot, but having a great time.

Grandma Lodgie is here. For that, too is something to be thankful.

There is COMING a DAY. . .

There will be NO more pain.

No more suffering.

Tuesday, September 18, 2007 7:00 AM CDT

Olivia continues to do well.

She did have a leak fest yesterday during David's FIRST orchestra rehearsal which required our coming home fast to get cleaned up prior to her little Keeper meeting. God is so good.

I knew it would be a fast paced outside kid fun at the end of the meeting so hooked Olivia up to some fluids. She is such a tiny mite but once you get her started she is a fire ball. It helps that she already knew some of the girls (who are gems) and one of the Moms is her Knittin' Club Lady (who O adores).

Keepers is a little group of homeschooled girls who work on different projects each month. I like it because it is based on God's Word and spending time with your family--Mom and Dad, depending on projects. This month was about HORSES! There are many activities which go along with it--it'll take more than just one month for us to work through it. I'm excited to learn about horses and see O's knowledge grow in something she loves so much.

When we got there O was quiet--naturally so and cautious. But the "guest", Miss Gracie the HORSE really opened everyone up--what a huge blessing. She was the most beautiful horse and the girls got to feed her carrots.

There were saddles set up and O was again cautious but her Knittin' buddy coaxed her up and it was ALL over then.

Marshmallows! What fun! Olivia has perfected her roasting abilities with her time up on the Wood "farm" this past summer, and so she loved doing that.

I unhooked her fluids quietly and quickly--O took it all in stride while sitting with two other Moms--I'm just in awe and so thankful for the kindness of the moments shared there.

I'm in the midst of writing a "talk" on "LIVING LIFE on TPN" and last night was a perfect example of maybe a simple coming together with others may seem like just an every day event, but for Olivia--(Me)--it was so ground breaking--it is always when coming together in a new situation. What will be good about this is each MONTH it is at a different place--which will really be interesting.

After much prayer, Olivia went to Sunday School last Sunday as well. Again, nothing is just "done" without much consideration. For the most part I believe she enjoyed it.

David is learning a lot life lessons right now. His first orchestra rehearsal was hard, but he didn't give up--he did say he'd go ONE more time--ha--that is WHAT HE THINKS! I think he'll learn much more than playing a violin in a string orchestra.

And THAT is what is all about.

Be blessed.

God is right here.

Friday, September 14, 2007 4:18 PM CDT

Ah--this week almost over.

Now onto this weekend of rest and HOPING we get to the BENNETT HOUSE!

It is so good to have all our family back together; Dave got David last night from Papa's house.

Just really want to stop and thank everyone for their prayers, encouragement, and listening ears--helping us during a medical interruption of life.

So thankful that Oivia seems to be getting back (no fluids were run on her today), that it IS Friday and Dave can have two days home, David is back with Charlie and it looks like it COULD rain. . .

A good rain washin' is in order.

!

Thursday, September 13, 2007 6:54 AM CDT

**Little Carolyn is awaiting results--my little sweet niece has spent some "time" inpatient while O was in regarding blood sugar levels.

**Dear Papi (Steph's husband) lost his earthly Dad. So thankful he was able to come to the wedding and participate in the celebration.

NEW PHOTOS on PHOTO PAGE:

1. Wedding: My favorite from the wedding.
2. Carolyn with rooster--she is so intense.
3. My dear brother who I love so much and miss!

24 hours ago I was so desperate--that kind of scared which doesn't come from God above. Fatigue is a bad thing. But through the morning I kept talking to God--wrestling with Him over the last few weeks. The changes which have occurred and are still--

So I called Aunt Becca; she is between jobs right now and in town. It is as if I heard God say--call Rebecca--she'll help you--and she did.

I was not up emotionally for the battle of the bed hair. When O isn't 100t can be a task full of tears and frustration so I put Becca on the hair which was done all in fun and fast!

O's 3 boxes of supplies which came were put away and every room looks so much better--and the best part is Olivia had school. Not just basic get it over with, but GOOD school.

She still hasn't broken over to the reading where she doesn't sound out words she doesn't know--that was concerning me. David and she are such different learners and that all was so apparent yesterday that I found myself rejoicing!

We started her Grand Tour II book. Let me back up, I was reading in some homeschooling article somewhere about the myths of homeschooling or something like that. One was, you do NOT have to finish every book! It dawned on me--Olivia's end of 1st grade book was far tougher than she needed right now. The 1st grade book with this curriculum is advanced and to me a bit overwhelming. But as I was reading posts about it--to see if it was JUST me or what, but that is basically what others were saying too--and that they found (as I do) the Grand Tour series for 2nd grade easier to handle with how it is laid out. The pages are much more thought provoking and will begin to work on WRITING. SO--with her almost finished with 1st grade book and with her 2nd grade book in--I decided to go ahead and start her on it.

It of course reviews over all learned in book previous which takes her back to square one--easy! She whipped through it--giving her a spelling prequiz on all the words she missed only 2 out of 40 words! We have a new thing we started this year which I found at the local teacher's store--spelling checker. So now, when we read we circle words she stumbles over and later she looks the word up to see if it is in her spelling checker, and writes it on the line whether it is or not--we review over the words--it has helped her so much.

She is learning the 7 Continents, 4 Oceans, 4 Time Zones (although there are 6 in the nation and 24 in the whole world!), 13 Colonies. . .some review, but we are having fun with the 13 Colonies.

Before falling asleep, we started our first chapter book together. She remembered how I would do this with David and wants to start now. Usually she'll read one of her books, but boy, is she a snuggler and loves to be as close as possible. We began book #2 (could not find David's #1--go figure!) of Magic Tree House. She reminded me to get a pencil so we could CIRCLE the WORDS! She did SO well! Mysterious and serious being two she'll write in her spelling checker.

I can't wait for Mom to come back end of this month to see how much more smooth O's reading has become.

Today I get to pick up my MUCH needed new glasses. These have been clouded over with scratches from the scratch guard put on the lenses! I'll run to the library too. . .and tonight Dave will drive up and grab David.

Papa and David went to their last Reds game for this season. I'm so glad they were able to go. . .it was dog night at the game. No, Charlie, stayed back at Papa's--who would want to take a dog to the game? :) So David boy will be back for HIS art class tomorrow.

Teaching art keeps me in a different world that I need to stay in touch with--I can't live in that world, but it is nice to visit.

With Dave's new schedule we are hoping to power work on some of the long weekends he'll have.

All of the above--is such a God given revelation. I'm so thankful that He guides me each and every day. Those days which I have walked down the wrong direction are so miserable.

Like horses that are yoked to chariots of kings.

Hook me up to Your Heart

never to be free. . .

K. Prosch

Wednesday, September 12, 2007 8:16 AM CDT

To be honest, right now, the only energy I have is to sit here and journal. Olivia had a lot of pain last night. She is in an obstructive mode for sure. This morning she is talkative with her huge bed hair (that will be a project for today for sure) which makes her so adorable.

Today is one of those days. There is too much to do and little energy--even concern for it--that is not good. So, it'll be step by step, moment by moment--keeping on top of Olivia's fluids and getting her cleaned up which is a major task for her--when not feeling well.

I would appreciate prayers for Olivia and me today. I'm feeling a bit lost as to what to conquer first.

Tuesday, September 11, 2007 9:17 AM CDT

Home--thank you for all your care, concern and prayer. WE ARE HOME!

xoxoxoxoxoxoxooxoxoxox

Funny morning. An Olivia-Sheila morning--a start of a day which always makes me smile, giggle and even laugh OUT loud--part of the humor end of this journey.

Last night Olivia and I fought for space in the bed, so I told her I was going to the parent bed--she said thank you--the silly girl.

I don't like sleeping like that as I then don't have one hand on the pouch--and early this AM I heard Mama. . .I'm wet.

So, it looks like a nurse spilled pouch while emptying at night. I still have my moments with the watery stool--and angles, etc. We get O cleaned up, the bed remade--and as she is getting back into bed the Jtube pulls out--you got it--all of this before MORNING COFFEE! :)

The resident GI comes in during it--I'm telling him we are going home today--dumping is a way of life--we just keep her hydrated, constantly, etc. Continuously. . .

So he got to watch the Jtube insertion. O is such a trooper. She really is getting good at telling everyone what is needed.

So they rounded--all is well. I'm so thankful for Doctors who respect those of us in the trenches ALL day--every day--every night--doing the best we can by our children's medical needs. Dr. Bates is so kind and encouraging. . .

So, the hope is to wait until NOON when the cultures are all due--and we'll skeedaddle on back to Southern Indiana.

Right now, O is getting a foot massage. Nice.

To Jesus--
Thank you. . .

Monday, September 10, 2007 4:39 AM CDT

Slowly she is more perky. Huge belly and tired. Cultures are negative (urine and blood)--so praying we can go home tomorrow. We shall see.

~~~.~~~

David made it to the violin audition and off to Scouts.

Thank you Robin. . .Papa and so glad Daddy's day turned out to be good.

A big sigh of relief for sure. Now to get us home!

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Olivia hasn't had a temperature since 8 PM last night, but she is miserable with a capital M. Her belly is grossly distended. With the pre-medication for VANC she tends to feel worse after the Tylenol and Benedryl. Her heart rate has been steadily high all night. She does not look good, but her labs are still fine. She is having a rough time of it. Going to ask about options instead of VANC.

We'll rest and rest and rest today.
More later, I'm sure--thank you for checking in on us--we appreciate it so much!

Sunday, September 9, 2007 7:45 PM CDT

Oh wow.

I was always quick to tears as a little girl. When Olivia got "sick" or diagnosed--a lot of those tears hid far far away only coming out in moments where laughter came on--which would turn into a deep sorrowful weeping session! Extremes!

I see how God can soften us yet, through this makes us stronger.

Olivia awoke with a cry out to Daddy this early AM. He is less like to snarl at 3 AM--but I followed him--to feel a warm little girl. Not warm enough--so we all tried to sleep a bit more but her next temp warranted a drive to CCHMC. And there in the ER we sat for 7 hours, awaiting something, still not sure.

We did however have a few nurses who actually acted like they really loved their job, the children they touch. It was refreshing.

After premedication for the VANCO--O still had a nasty itch session.

She is tired and growing more distended in her abdomen. We are at the routine--watch and wait--watch her--wait for cultures, etc. We got to see Dr. Farrell of the FARRELL bag! I like him A LOT. Breath of fresh air--called to ER asking WHAT was taking so long to get his girl up there! YES! MY KIND OF DOCTOR!

She's quiet and miserable. Those would be two good words to describe her.

So yeah, I was a big baby driving up--maybe it is hearing my Dad's voice and how it still comforts me--how he still can come in and fix the day. . .coming down to watch David and taking him to his FIRST audition (everyone gets in, but it is a big deal for a Boy full of Wonder)--and then to Scouts.

"Dave the Daddy One" HAS to be at work tomorrow as he has a big day as well. . .

I feel like they need me--and then comes the HEAVENLY Father to the rescue! He was right there all along--watching over, comforting. . .and drawing us closer to Him. . .leaning on Him.

> > > > > > > < < < < < < <

<><

Thursday, September 6, 2007 7:05 PM CDT

Singing the Praises to the King of Kings--the ONE WHO can bring me to tears. . .sorrow and joy. All of it.

Today was SO much better all around. With Dave home it gave him opportunity to be a part of school which may be happening more.

David and Olivia both felt better.

I had an incredible eye appointment with an eye doctor who not only loves what he does but loves to teach. So during my dilation of pupils I got a pretty extensive anatomy lesson from one question about smooth muscles in the eye!

I can't wait for the kids to go to him. I chose TWO new pairs of glasses. SO needed.

We were able to get everything accomplished--even David practicing VIOLIN!

I felt like a LOT of things which have been concerning. . .are slowly melting away.

Thank you for your friendship and prayers.

Wednesday, September 5, 2007 6:04 PM CDT

School days--SICK DAYS!

UGH! Horrible when BOTH are not feeling well, and then add a Mama and Daddy too--who are not feeling their tops.

As a friend said--the first day of school has left ROOM for improvement.

David has a low grade temperature and very little energy as well as just plan feeling rotten. With David you can tell how badly he feels by how many baths he takes. He is up to 3 for today.

He is concerning over his little "audition" for mini orchestra, with having been away and not feeling well he hasn't practiced. He'll be a youngin' that is for sure and will have lots of room for improvement. He is afraid he'll be too sick to audtion. Real stuff for a boy.

And Olivia is anxious about getting sick. She is way off and knows it. The flu is on her mind and we've been trying to talk it all out. She is low low grade as well, so praying that it doesn't turn into anything more than just a warmth.

I'm trying to push through it--realizing that there is plenty of time to do what I had hoped, and looking at we were able to do. Bible and pushed through math and language arts. . .cuddled up in bed. The kids are excited about Impressionism and all the little stories I'm finding about that time period. How the critics claimed the SKY looked like BUTTER!

We've had some deep times here lately, foreboding, if you will. Last weekend while I was alone I felt God's Presence and His pressing me to be ready. And this week has given us some surprises for sure.

All in all, I'm trusting my Heavenly Father in it all. He is showing me that I really can't plan it all out. It'll be in His timing. LETTING IT GO.

I have to share one huge blessing of Tuesday's art class:

God totally worked out my desire to have smaller classes in art this year. One of my favorite classes (OK, so they ALL are my favorite) is an all girl upper elementary class. The day which I felt such foreboding, this sweetie came in with a homemade card, sharing how she wanted to be an art teacher like me someday, other little sweet tid bits, but the kicker was this. . .she asked if I had art work at the local Art Museum in town (we are going for a field trip soon). . .I giggled and said no, she continues to tell me my art work is hanging in Heaven.

How incredible is that? Really made me snap into eternal perspective--the ONLY way to LIVE!
Thanks, Abigail!

Tuesday, September 4, 2007 7:22 AM CDT

Everyone home; Dave got to work; kids are sleeping. . .and another year of school is HERE!

David's outside learning will be piano, violin (with hopes of being in a children's string orchestra), Scouts and fencing. Olivia will continue with piano, a weekly Readin' Club with Miss Rachel, Knittin' Club and Keepers of the Faith. Olivia has her weekly Readin' Club with Rachel during David's violin lesson. It works out nicely. We'll continue with our Cottage School as well.

I have 4 classes of art I'm teaching. Each class is my favorite! Now that I'm in my home and the classes have been cut back a bit I can teach a class longer which means we have more time for art history/appreciation. Impressionism is first on the docket. I know I've enjoyed researching and coming up with interesting stories to share with the kiddos.

On a medical note Olivia is congested, and probably tired, so we will take it slowly this week and get to bed early to rest. Her tummy is still VERY soft and flat. Today we'll have to cath between art classes so that should be FUN! We've already talked out our "plan". . .

To Jesus!

Sunday, September 2, 2007 6:32 PM CDT

Everyone is safe in St Louis.

Olivia calls me. I love her little voice over the phone. It sounds like she is 4 years old; it rips my heart to be away from my family, but I needed to stay home.

Tuesday will be our offical beginning of the school year. Although we've been doing plenty, this means all the extra stuff will be in full swing as well as ALL the subjects each day.

In art we are studying Impressionism. The scenes from the paintings remind me of my little girl--sewing or knitting--she is such an Impression for sure.

Be safe this Labor Day.
Know He is God.

Friday, August 31, 2007 8:36 AM CDT

END OF AUGUST!? Wasn't it JUST yesterday I typed first day of August?

What an amazingly meaningful summer this was and still is. We were able to connect with family and friends this summer which only could be borne out of The One who is Love, Mercy and Grace. . .Peace, Joy and Compassion. . .Patience, Kindness and Righteousness! I give HIM all the glory for the GREAT and WONDERFUL people, experiences and places we've been able to visit!

On our way home from a dinner out with our IDAHO friends--Olivia and I had a most revealing talk. As we were pulling out of the parking lot I mentioned that one of her friends (who is 10) was having to go on TPN and may have surgery for an ostomy.

She was so surprised as she thought her friend already had a central line and TPN by how the friend responded to Olivia.

Olivia went on to say that most of the younger girls look at her and are scared--then the older girls tend to be more relaxed and just talk about how they do this or that. We talked about how older girls have impressed upon her and how she wanted to as well. Which she has been! The funny part was that she said she would NEVER talk about the pouch. I said never say never--and she said, I KNOW--ALL THINGS ARE POSSIBLE with GOD!

Wednesday, August 29, 2007 7:22 AM CDT

Monday night while Dave and David were at Scouts Olivia and I did some grocery shopping. As we walked into the store holding hands there was that moment of shear thankfulness.

Olivia has had nothing BUT incredible days. Her belly is flat and even she has commented how nice. She for the most part has enjoyed eating canned pears.

Her energy is SO much better as well and I am thinking this could be due to the fact we are giving her the lipids she needs. We'll have to wait another week before starting the new TPN from clinic--as we have plenty left over.

I give thanks unto the Lord for His care and mercy--for sending the people (we) need--He is a loving Father.

Sunday, August 26, 2007 11:49 AM CDT

Last Sunday in August.

Dave took the kids to church with him so I could have some time alone, quiet time--alone. . .but NEVER alone--I am NEVER alone! I'm so thankful for this Truth-this PROMISE.

This old girl needs some time alone to replenish.

This past weekend was such a special time. Kenny and Stephanie are now one! To have been even a small part was a blessing and we are grateful for such people in our lives. This was another life opportunity for both my childre; Olivia especially was dazzled. The night before she kept asking if I thought Steph was happy she chose her to be flower girl. Even on the ride home she asked again--reassuring her that she indeed picked who she wanted.

In looking over the summer we've not been home very many weekends. And this coming weekend isn't any different with Dave taking D and O to see Grandma and Grandpa in St Louis. They are excited to see their grandparents. I would love to go, but at this point, with school starting I so need this time to be quiet, busy, building my nest--home and school.

Now to ready for my troops to return so we can press forward.

**Medical note: Olivia has had wonderful flat belly days. We think it is the Rocephin she is on for the UTI. We will shoot for early October for TPNclinic/Urology's testing and appointment as that will give us some time home to get some school days under everyone's belt and a few days in Cincinnati again for visiting with dear friends.

To Jesus!

Thursday, August 23, 2007 11:05 PM CDT

An extra out of the ordinary day!

Rising and shining early is not one of my strengths. David POPPED out of bed, showered and loaded the van. He is such a boy who helps. He has taken over hooking up the cooler and loading the TPN, lipids, vitamins, Zantac and TWO med balls!

I'm resolved to not hurry. We were not 'on time' for the 10:40 appointment, but we all arrived intact, (David fed) and happy that the tire on I71-I75 which was running rampant didn't cause a wreck. Just a rolling tire--bizarre.

Urology will be a repeat; Urodynamics study in order along with a follow up with UROLOGIST. We'll start cathing 3 times a day when she is not cathed over night.

TPN clinic was celebratory to a degree: ZELNORM is just but 2-3 weeks away!

I know many of you have prayed for this and I thank God for His mercy, care, love. . . and for the faithfulness of His saints.

I had to share this with you.
Thank you for caring--more tomorrow, as there is a WEDDIN' TO ATTEND to!

Wednesday, August 22, 2007 5:51 PM CDT

3rd TRIP TO CINCINNATI in AUGUST!

Tomorrow we head up to CCHMC for Olivia's "Healthy Bladder Clinic" and regular TPN clinic. It'll be an early wake call for sure. There are several items up for discussion, but that is always the case and really not worth mentioning at this point. The "Healthy Bladder" thing makes me giggle--hope I'm giggling by tomorrow afternoon. One blessing is we will be able to visit a new friend who'll be "in" having a CVL placed. Thank you, LORD!

The excitement grows for our STEPHanie and Kenny. Olivia is a bit intimidated about her dress; I'm just praying she keeps a semi flat belly so she'll be more than comfortable. That was Steph's goal--for O to be comfortable. I can't believe it is here. . .and to see other friends as well. . .

We had another great schooling day. Although we are still in a summer session, meaning not all subjects covered we've been doing devotions and just started the study of Jesus' life. The kids really like the study and it makes the day flow so much better when we've started it out concerning Him.

I have to say it was a fun day. I was able to get all the packing of clothes, supplies and other fun things for our trip, but also sat through David's violin lesson. He is being taught by a high schooler and son of a dear friend. Benjamin is a hoot and he uses his mother's amazing teaching tools to explain fingers, etc. It was exciting to sit and listen to them both. Meanwhile, Olivia was having a one on one with Rachel--they read a story using couplets and after wards they wrote a couplet and made a paper jam sandwich.

Our day ended with our return to home and Papa and Charlie sitting outside. So I got to see my earthly Daddy. . .
Can't wait to see my Heavenly Father. . .

Awaiting His return.

Monday, August 20, 2007 9:06 AM CDT

Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning
James 1:17 KJV

I received a gentle touch of a Greatgrandmother on my shoulder yesterday at church with words of encouragement--from someone I really do not "know" was uplifting, healing and helped seal the deal after such a great sermon.

Homeschooling is the most challenging life's work I've ever attempted. It is not done before peers but truly before God and your children. It works only when you listen to what God tells you to do, not what others do--what feels right or even looks good. It all boils down to the brass tacks of the Heavenly Father's flow of direction.

Before I go further with that, I have to mention that our home AND outside has all new furniture. Parents of a dear friend gave us NEW furniture that now it looks as if we JUST moved in--we were ALL out of drinking glasses except for the Cincinnati Reds glass which Grandma Lodgie has "dibs" on when she comes and the countless mugs, but once again even in the smallest of things--God pulls through and using these people gives us a BEAUTIFUL new set of glasses AS well! (I had been telling Dave I needed to get some!)

So, with only having 3 days here at home before we head up to Cincinnati Children's for a 10:40 Urology appointment and a 1:00 PM TPNclinic and a WEDDING on Saturday in the Mason area. . .I realized we can do "summer schooling" this week, pack, organize this beautiful furniture and start next week.

Olivia slept until just now, she was tired. UTI will do that to you; she looks too skinny to me and loss a lot of fluid out her ileostomy pouch--so fluids will be in order today as well as. . .

Happy Birthdays to Izza. Olivia's kitten is now officially a "CAT" and David is playing Happy Birthday for Izza right now!

We'll bike ride, Bible, read and write a letter, pack and pack and organize and clean. An ALL day home day. My favorite for most days.

Again, every good thing is a gift from God. Big, small--all.

Sunday, August 19, 2007 8:52 AM CDT

Got a phone call from Nurse G early evening Friday and our dear Olivia does have a UTI. Hard when weekend comes, but the med ball arrived without any glitches at all--but the kicker is now we have to do our first dose at PEDs or ER. So O and I went to Floyd Memorial to infuse. We had a great time, but missed out seeing our friends. That is for another time.

Praying for the sick at heart and body.

Friday, August 17, 2007 8:34 AM CDT

Still waiting on lab reports on O's urine. I don't think she has a UTI; I believe she was obstructing and behind a bit on her hydration.

When David and I came home yesterday from fencing lessons Olivia's belly was bigger than big. By bed time her belly was flat she had a dumpin' session. Fluids are in order for today--this day that Grandma leaves us.

Olivia continues to have a great belly, but this too can change within the hour.

Grandma, David and Olivia are looking at all the photo albums--mine right now when I was a little girl.

Got an email back for O's Nurse G saying that maybe Healthy Bladder clinic is something like Healthy Guts clinic. So, we plug on--and see the Nurse Practitioner this coming Thursday with a follow up normal nutrition/TPN clinic with our beloved Nurse G and Dr. Kocoshis.

Safe travels for Grandma Lodgie.

Thursday, August 16, 2007 5:48 PM CDT

Ah--life.

Huge COLD front came in and blew away the heat.

Got a phone call from CCHMC reminding us of the upcoming urology appointment--it is funny, "healthy bladder clinic" who comes up with such a name for anything but a healthy bladder? O has to see a Nurse Practitioner before even seeing an Urologist, which will mean another trip up. Didn't know THAT was part of the plan.

I really want to get O's story on paper. (I believe after her last hospitalization I was going to do that!) But other circumstances have arisen which in doing this will aide in the progress of understanding.

School starts back Monday (FULL THROTTLE SCHOOL) and I don't feel I'm remotely ready. Hoping to get much planned out during Labor Day.

Hanging in there--PRESSING ON-

Wednesday, August 15, 2007 6:50 AM CDT

God is so good. He gave Dad a wonderful behind homeplate kind of game on Friday for his birthday. He brought us all together to laugh, cry, play, talk. . .it was amazing. I miss my family so far away in California. As Carolyn put it, "Tahoe is too far away"--but we live in a time where we can still communicate face to face. Just like anything else, technology is great; it can be misused, but then so can most things.

We've been laying low, catching our breath for the next round of events. Mom will go back to California on Friday which will end one of the best visits ever. Each visit is better than the last! She'll return end of September for her 50th High School Reunion in Crown Point--so we'll have her for 2 short weeks.

Next week Olivia will be in a wedding. It isn't any ordinary wedding by any means. It is the product of several years of support and love. The lady getting married is one of my favorite people and having had the priviledge to get to know her over this last year a bit more I'm so blessed we are included in this WONDERFUL event. You see, Stephanie is a mom of 5 boys, and 1 grandboy. She is MY age born on the SAME day! She has a central line for TPN as well as two other of her boys. Her fiance also wears a catheter for TPN. It was after our visits this past year to Steph's boys that I saw Olivia start to bloom--and couple that with our time spent at Oley--and again last Cincy trip with Noah, and Donna and Kelsey--it has been an amazing growth time. People who understand--get it--love her. . accept her--her people.

So we have the dress and shoes, just some details now and I don't think Olivia can contain her excitement at times!

Since we school all year--15 days a month would be required--but August 20 we will restart FULL school so we can take off extra time for up coming fun--holidays. . .

Thank you for your love and care.

Friday, August 10, 2007 9:53 AM CDT

For those of you know--(I'm not good at surprises)--the SURPRISE was a HIT.

Mom, David, O and I arrived with PAPA to the Marriot here in Covington KY with Uncle Greggie and Carolyn...Daddy Dave followed later after work.

Papa was VERY surprised. We are having a blast. He is proudly wearing a BIRTHDAY BOY pin that David brought. . .fun stuff.

God is so good.

O has an amazing flat belly; she is enjoying her girl cousin as is David.

Swimming and Reds today.

Praying for our dear friends. . .

Thursday, August 9, 2007 5:08 AM CDT

UPDATED PHOTO PAGE of D>A>V>I>D!

August Cincy Trip #2

We leave today after David's fencing to pick up Papa and take him over to Cincy. TOMORROW is Dad's 70th birthday and we are going to a Reds game.

The kids are all excited about celebrating and also going to a Reds game.

It has been VERY hot here and so I'm a bit apprehensive about Olivia's hydration, but will keep her full of fluids. Put a call into the guest services at the Great American Ballpark and the response was helpful. We may spend time in FIRST AID to cool off.

I awoke early this morning in a dream. Visiting Jerry's sister in California and all her daughters. While I was there I got a call about Zelnorm. That alerted me and POOF--I awoke at 4:30 AM--

We are running low on Zelnorm with no word from FDA.

I'm really trying not to fret. God knows how it works for Olivia; He is the ONE doing it all. I have to constantly remember that.

Olivia has been doing SO well, distention wise.

Thank you for your prayers and care.

Monday, August 6, 2007 8:42 AM CDT

TUESDAY--HAPPY BIRTHDAY TO HOPE, Natalie's Hope as we call her at times.

www.caringbridge.org/ma/natalie

DENTIST!

We have a great dentist. Her dad is an orthodontist in this area. She is also the sister of the police officer who was shot and killed. When it came my turn to ask questions it was all I had to not ask how she was doing. It was the flesh speaking. But I go back next week (old teeth:) so I can say something--press something into her hand, something O can make for me.

We then watered our friend's plants and off to Meijer.

I realized it had been a VERY long time since being with my children in a store together--just the three of us. It was delightful, clean and simple fun. It was refreshing to have gone to a medical appointment and find NOTHING is wrong with ANY of us. I felt like skipping through the store--I think we all did.

It is days like these that I'm so thankful for the depth God has shown me, but counting times of rest.

HOT--we saw 99 degrees today. Amazing.

~~~~~

Home!

Dave and David made it through Resident Camp for Cub Scouts--with the piercing heat they endured til the end. So pleased they stuck it out. Way to GO, DADDY DAVE!

Olivia continues to do well, distention is always a part of her day, but overall she is nibbling at times and feeling well.

I love the above photo of Noah and Olivia.

Noah was right on board with showing off his belly; Olivia a bit more modest but understood the "why" of it and agreed. There are many reasons for this photo. My prayer is that other children like Noah and Olivia will see it and know they are NOT alone. Also, that those who know us will realize Olivia is not the ONLY one.

It shows the light that is evident within them despite the different way they are made.

When I stop and really think about what these kids carry under their shirts--not just when they feel like it, but EVERY day. . .they can't just rip the pouch off when it starts to bother them and leave it off--it stays--it has to--there is no option. Wild!

I asked Olivia the other day about her central line--as I was feeling it under her skin as it tunnels over to her heart; "Does it ever make you wonder what is going on inside with it?" Her response was. . ."I just don't want it to ever come out"

These "appliances" are as important to her as her arms, legs, fingers toes, --she has said once or twice I wish I didn't have. . ., but now sees the IMPORTANCE of such man made tools for her body. That is not to say she doesn't wish she didn't have, but she does, so let's move on--

Keep on Pressing On--

!

Saturday, August 4, 2007 7:03 AM CDT

Well, today is the last of our first trip in August to Cincy. Yesterday was filled with great memories with great dear friends. We visited with Ginny, Tom and Winkie (Pinkie as O calls her) for lunch then headed over to Ginny's studio for O to paint. We did take a hike/walk into her woods to see the waterfall, which I ended UP falling! It was beautiful and reminded me of how much I love the Midwest's woods. And how great friends really are.

Then off to SWIM. Olivia and Grandma played in the pool; Olivia had a blast. Then we showered and readied for the tent meeting.

I had never been to a service like this and was blessed by it beyond measure. I felt God there and could have stayed all night long. I so wished Dave and David could have been there.

We ended eating at SKYLINE with Rosella and Pastor Lary afterwards--O bellied up to the food bar with her TPN bag. She was SO excited to finally have some Skyline cheese. We'll probably pay for it today, but it made her so happy.

. . . . . . . . . . . . . . . . . . . .

Although the fig tree shall not blossom, neither shall fruit be in the vines; the labour of the olive shall fail, and the fields shall yield no meat; the flock shall be cut off from the fold, and there shall be no herd in the stalls:

YET I will rejoice in the LORD, I will joy in the GOd of my salvation.

The LORD GOD is my strength and he will make my feet like hinds' feet, and he will make me to walk upon mine high places.

Habakkuk 3: 17-19

Wednesday, August 1, 2007 7:47 AM CDT

AUGUST!
Late August 2--Cincy Trip #1

After breakfast with Auntie Joyce, and her daughter in law and grand daughter, AND Auntie Rosella, Grandma and David, Olivia and I headed out to look for a flower girl dress. We got side tracked a few times (I) with all the diverse shopping here. We DID find THE dress--a white dress, plain, but fit her and has "layers" for poofieness--and twirling capabilities.

I caved and said yes to swimming. David was so excited to have his sister in the pool. Kelsey taught David how to do different "jumps" and he had O on his back--they were precious--the three of us had the pool ALL to ourselves.

Prayed over her line as I changed the dressing--If it be God's Will to keep her safe.

We joined the dear retired Loveland teachers for a time together (we do this every year when Mom comes in)--and got to see Angie and her Noah and Noel.

So utterly thankful.

Papa took David as tomorrow Daddy will pick up David and take him for the weekend for Resident Camp.

We'll have breakfast with Ginny and Winkie (Pinkie) and go from there; we hope to visit Auntie R's church for an old fashioned tent revival.

I know, O wants to swim again. I feel so much better being HERE to do it. Living!

Thank you dear friends for the faithfulness of your prayers and care.

To Jesus. . . .

Early August 2:

Made it up here, dropped off Charlie with Papa and headed on over to Cincy. We had a great afternoon with Kelsey, Donna--even got to see Auntie Joyce and her grand DAUGHTER, Megan!

Check out the photos by Keesha--of O's portrait and knittin' purse.

Thank you for caring!

_________~~~~.~~~~_________

Olivia's health has been extraordinary! We've been able to keep her on Zelnorm thanks to dear friends who had a good supply. I received an announcement from Olivia's homecare company regarding Zelnorm from the FDA. It looks like it may be back for selected individuals. We are praying Olivia is one as well as those who truly need it.

We are off on the first of three mini trips to Cincinnati. This trip we hope to see Donna and Kelsey, Angie, Noah and Noel, Stephanie and some/any(?) of her boys, plus all our dears from the Loveland area!

I love going to Cincinnati; there is virtually NO stress in staying there as I'm just MINUTES away from THE hospital which cares best for Olivia. It is my home town!

We have been able to get some good schoolin' done over the last several days. The kids are studying George Washington, quarter, dollar bill and about Washington's Monument. David LOVES history. We are so blessed to have someone who has a love for this country, has BEEN and experienced D. C. and knows about our country in a very unique way--a perspective that not all AMERICANS can speak to--having someone in their family run for office--and HOLD an office! God is SO good.

He provides in ways that I never could have thought up myself. He connects us in ways that only He could do.

Please pray for Zach and his family. www.caringbridge.org/wi/zachsam

Friday, July 27, 2007 0:41 AM CDT

*Another TPNsupport friend has lost their child. Judy lost her dear daughter, Sara. Please join us in praying for the family. We continue to pray for the families of Kyle, Natalie and Sam.

www.caringbridge.org/oh/kyle
www.caringbridge.org/ma/natalie
www.caringbridge.org/wi/zachsam

and Matthew's Mom, Dad, sister and brother.
~~~~~~~
David's day was by far the most low key. It is the sign of the times here at our house. Less IS more. He enjoyed playing around on the computer and watching his "shows"--we celebrated at Trans a Japanese restaurant which does the show in front of you. He was so happy as he had Pepsi probably for the 3rd time on MY watch. We came home and he and O put on a music show for Papa; we ate cake and acted goofy while doing it. Olivia was done and in bed. She chose to knit in bed while we had cake.

AND. . .we took out Jtube as it was about to come out with her stoma being WAY too big. She PUT IT BACK IN and adjusted the disc! This is MAJOR! She is doing more and more. . .and is ready to visit her friends at the Bennett House again. And I think I'm more than ready too.
David received a pretty massive model of a space ship from Grandma Bert and Grandpa Pete. He begn working on it and stayed up with Papa and Daddy until his birthday was no longer. . .BOYS!

It has been a nice retreat over the last several months of working through and being quiet (sometimes).

Last night before bed I was reading in Kings about Elijah's end of his ministry and the beginning of Elisha's. Olivia sang out "I love the best and true God". . .in a soft voice. At this point she was snuggled close. She spoke to what knitting is to her. It is something that no one else in the house can do; it is her voice right now. Interestingly, she mentioned how she likes people to notice it. She has been making/knitting very pretty little pocketpurse necklaces.

I'll get photos of some.
~~~~

My boy's 9th birthday.

He had a great day at fencing class and then to history and science class with our friends.

He is enjoying playing Heart n Soul, Swanee River and other old favorites. Grandma looked up Twinkle Twinkle Little Star in Latin to sing while he plays it on violin.

He is precious as he'll sing as he plays.
We'll celebrate with a quiet day at home and a cookout on Saturday.

We are looking forward to what God has in store for David.

Thursday, July 19, 2007 7:12 AM CDT

Summer's humidity and heat has decided to stay. Just a few minutes outside for Olivia and she will wilt like a cut flower out of water.

We head out today to Papa's to begin our trek to Central Indiana to visit my Aunt Linda and her family and watch the CIRCUS parade in Peru, Indiana. We'll then head over to Connie and Jack's staying with Amy and JackIE (I still call him that!:) where it is air conditioned. I'm looking forward to seeing the corn, the chickens, and making art with the kids.

Praying Olivia will enjoy it. She's not eating much right now. She is off and on distended to big distended. I'll take a cup for urine sample. Never leave home without it!

We've been doing school. Both kids have been practicing piano regularly which produces accomplishment! Olivia's Two Little Blackbirds song is ADORABLE and then I got her hymn book out and she can almost play Praise Him (all ye little children, God is love, God is love)! She will surprise her Mrs. Robin with that! She sits down by herself without my hounding (ok, nagging) which blesses any mom/teacher!.

One very sweet thing. When the kids are learning a new song I'll sit with them and play one hand while they play the other. Two days ago, I made it as if O and I were playing a duet, explaining how when David and I play duets he will press into me to let me know he is "ready" --well, she loved that. We played a song over and over--and she would elbow me very slowly and softly! BUT SHE LEARNED the line easily!

David and I have been playing his old duets and the we improvised with Heart n Soul--he did a GREAT job and was so pleased with himself. He tends to be SOOOOO HARD on himself.

Pray with us? Dr. K has the appeal in for Zelnorm. Two friends gave us their Zelnorm which gives us a bit of a cushion, but that cushion is running out.

We look forward yet live in the right now, look back, but try to stay in the moment.

A special prayer for parents who have lost their children, to those still seeking answers that through it all they see eternity's prize.

Praise Him Praise Him all ye little children!

Friday, July 13, 2007 11:44 AM CDT

There is such a freedom to be oneself.

In this chronic sickness journey there was the dark ages of learning to care for a daughter with needs I had never even heard of before--to have nutrients infused into her veins, to have tubes in her body to release body fluids OUT, to put medications IN, for her body to excrete in a different way, into a pouch and into a catheter! Wild! It was an incredible time of living moment to moment.

Looking back to those first few years, how YOUNG David and Olivia BOTH were! 2 years old was Olivia and David 3! How they adjusted far faster and better than we adults EVER did or WILL!

Then there was the stage of breaking out into the world outside our comfort zone. How I tried to make it all seem so fine, working hard behind the scenes--putting on the stainglassed smile with pretty much everyone (new) in my life--which isn't fair to anyone. That can't last for it isn't real and I guess that is when it all came tumbling down last summer/fall and finally last January, God never gave up on me--He gave me my heart's desire, peace, liberation and dear friends who know me and still love me.

And our trip to Cape Cod, to the Oley Conference really wrapped it all into a tightly bound bow.

I guess, I reflect this afternoon (because I'm trying to be patient with two children who were playing around instead of doing their studies) and after receiving an email from a dear friend stating she is working hard on being Grateful--I stop and thank God. And I so appreciate that in her--for it is hard for us, isn't it?

Olivia this morning was sitting looking at photographs of the time period RIGHT before her tubes. Not once did she say, I wish I didn't have tubes, but pointed out how distended she was in the pictures--and she now (still experiencing such gross distention) KNOWS what a BLESSING these tools are for her. She saw herself as a baby, little girl, just poignant to her (always to me)--how she was and is.

I saw in those pictures (VERY carefree days compared to today's concerns) snapshots of today. My children are alive, growing, learning, not in any dire crisis--listening to the birds, giggling at Charlie charging after Izza, and trying to win over Sugarbelle.

Tomorrow is NEVER guaranteed, eternity is just a moment away. . .

Hope is always in the midst.

Wednesday, July 11, 2007 4:46 PM CDT

Grandma came and went. . .BUT will be back Friday evening.

Auntie Midge scooped Grandma for the ride down to KY as they are delivering Cousin Heidi with her work as Midwife. It was great to have a Midge drive by moment with Heidi. Neat lady.

The kids are baking their first cake together. They are splitting the batter and making one small round cake and then cupcakes; will be interesting to see HOW they clean the kitchen.

I'm enjoying slow days, piano playing, violin too--by David, math, reading, reading, reading and we are working on letter writing. Thank you notes, birthday wishes, just getting them to write--and bless someone.

A lost art in today's world.

Dave is feeling MUCH better and has been back at work; I am having a hard time sleeping at night with a nagging ache in my head.

We lift our dear friends to Jesus--for His healing touch and mercy. . .

Saturday, July 7, 2007 8:40 AM CDT

Nothing new under the sun.

The last few days were survival mode type days having to go to town both days to run errands. Dave has some funky summer cold which makes it hard for him to talk; David and Olivia have been reading, practicing piano and playing with their Star Wars toys which Hope's Zachary passed to them.

Olivia is also working on coloring books for people. She wants to send a book of cacti to Uncle Bill and Aunt Vangie. So we got some books at the library about cacti.

David is working hard on the reading program this summer at the library. He has read all sorts of books, although, his favorite are biography. He finished a book on Johnny Bench and now is into Davey Crocket! He has Ronald Reagan and Neil Armstrong for over the weekend.

Olivia and reading: She can do it, but she still hasn't broken over to that ease of reading which makes it enjoyable. She rather knit, sew, draw, crochet, paint than read. She wants to be an artist!

I'm hoping to finish astronomy by end of August for science, but reminded the kids that they will always be astronomers--always looking at the sky and we'll study again more in depth one day.

Charlie dog and I have some business to take care of, more exercise and watching what we eat. My boney days have been officially over now for several years and I need to get down to business about it. So, Charlie is going to be my buddy in helping me and I helping him. (HE so loves to sneak into the kitty food. . .)

Praying for Anne's Zachary today; he is so heavy on our hearts.

Thursday, July 5, 2007 9:41 AM CDT

NEW PHOTOS on PHOTO PAGE!

Ah! We WILL have days at home--NO urology appointment on Friday! Got home to a message requesting Olivia come in Friday; I'm thinking, huh?

Turns out the clinic is closed and needed to reschedule!

So August 23 it is.

Time to get the Sugarbelle kitty from the Vet and hunker down; we had WILD storms all night last night.

Wednesday, July 4, 2007 9:45 PM CDT

God Bless America!

Tuesday, July 3, 2007 8:37 PM CDT

This morning I awoke and felt I needed to say. . .
Yes, it was the best conference but there were children missing. We chose Oley so we could SEE Kyle again. He was not there. It was so good to be able to give hugs and talk face to face with so many people I've missed or wanted to meet. All of that said. . .

Oley Foundation offers conferences, many use the time to sit in on sessions. For me, it has always been about hanging out and talking with the PEOPLE.

I have very little memory from our 1st Oley conference only that of Kyle dragging his TPN and Donna following behind with a Diet Coke. I was so amazed as to how strong that boy was. He is a bit older than O. I took away from that moment much as to how we drive things here--when needed we push and rest when called for.

And then there was Colyn who graciously, gently showed his tubes to Olivia and she to him (she was 3/4?) and it was a done deal as far as Olivia was concerned.

Ah, well, read on if you haven't already, press on no matter what.

Home!
Scattered thoughts. . .

We are home. Today is Aunt Midge's birthday! It was also Matthew's birthday; been thinking a lot about him. How he held our hens and gave us Cadbury the Bunny. And many other things as well, but mostly how brave he was over and over again.

Bravery. My friend speaks that to Olivia. Tells her she is a Brave Woman. I spoke that to a few kids, wish I had said it to more, but I still can. Internet is an awesome tool.

This Oley was by far the best; I think because the kids are older they have their preferences, etc.

I cherish the chance to talk with Mariah. Olivia just thinks Mariah is SO beautiful. She loves Allison and Brittany as well. There were TWO Samanthas there which she adored both. It was so funny how I had to always tell her who everyone was. KELSEY TOO! OH MY yes!

I met people I never thought I would (Coleman Family, Justine and Samantha and Allison and Zachary!), I always knew I'd meet Hope, but didn't know if the timing would work to meet Zachary and Allison. I have to say, Zachary WOULD have (has?) me WRAPPED; he has a good sense of humor and depth; two pluses in my book. (Allison is TOO much like me:)

To see others that we've met before, like Tim and Ann, etc. etc. etc. Alycia--who Olivia also adores. LEXI--and to meet CAMERYN and Mr. JOE! SWEET CHILDREN!!!! NOBLES and WOODS! CONRAD! FAMILY--

To be there for the Memorial and the Scholarship--to see Kyle's incredible photo. . . . .to be there. . .

To watch Natalie's slide show--WITH HOPE in HER HOME. Incredible.

To get hugs from Colyn. . .what a dear--Olivia has grown up from Colyncalifornia to. . ."Colyn gave me a hug"!

We just got to do so much in such a short time! Exhibit hall was a BLAST! All of Olivia's stuff minus the pouches! She even "won" (Thanks a LOT Patty! HA HA) some SINGING BRITTANY SPEARS FROG (Oh yeah, THANKS A LOT PATTY!).

The kids and I went to a MARSH (I was NOT NOT going to go--it was WAY too cool), they did Mini Golfing, we road on a fire boat, went to the beach for the day, David swam, Olivia and shopped on Main St with Hope and Allison and us two girls alone too. We spent a LOT of major cool down time with friends, went to a PJ party--made pillow cases, t-shirts, other crafts, participated in a silent auction and painted rocks at the picnic!

WHEW! And when we left headed up to Plymouth Rock, Lowell (where Hope lives) then stayed the night in Lexington.

Off to HOME which we went over George Washington Bridge and saw a very tiny Brooklyn Bridge and Midtown, but my children saw it nonetheless! I think I was by far THE most excited over that.

But we are home.

I do love to travel; and this trip had several strange situations which made me want to run home, but in the end--it was one of the hardest, yet best trips ever that we four have taken alone.

We stopped by to pick up Charlie and Izza, Sugarbelle will be scooped up as soon as the VET is open.

Thank you dear friends. . .and to all may you have a blessed July 4.

Monday, July 2, 2007 8:07 AM CDT

We are officially on our way home.

We had a stop over here in Boston area. A visit with Hope and then last night with the Woods and Nobles. What a major needed blessing.

Dave and his TOM TOM will get us home. The purist in me caved so we shall see. The features are great, but being a map lover--well, time will tell!

Olivia has a soft belly--we are excited to get home to IZZA and CHARLIE, oh yes, and SUGAR and all our dear friends.

We stopped by Plymouth ROCK yesterday! I could have stayed there all day, very quaint and beautiful.

Again thank you so much for your prayer support, for my brother's home and our trip.

Looking forward--pressing on!

Sunday, July 1, 2007 6:46 AM CDT

JULY 1st!

WOW!

Yesterday was another connect the dots kind of day! So many parts to it which then makes it feel like you've earned additional days within just one day.

Dave and David went swimming in the morning then WALKED down to the Village Green where the picnic was happening. I drove Olivia down. Olivia's belly is big but she manages and copes.

Art is such a magnet for kids. As soon as we sat down there were plenty ready to do whatever there was to do. I just wish I had some photos of the rocks!

Olivia has been so social as well as David, but Olivia really had come out of her shell she was in late winter early spring. I do believe she was depressed. A lot of prayer, friends not giving up on her feeling-- their unconditional love and I think things started to crack open when we went up to see Korey in the musical. It is so vital for her to know she is NOT the only person out there with contraptions and alternative nurtitional support. She ran around Jammin' Jammines with her belly (distended as it was) hanging out.

~~~...~~~
Hope, Zachary and Allison made it to the very end of the picnic! IT was such an amazing opportunity to meet them all. They ended up staying until 10:30 PM? There was a lot of time to talk, connect more dots and talk.

It has been so great to meet people who I have loved from a distance, who I have connected with on a certain level--to be able to see and hear and touch.

I am inspired by these people. I'm ready to fight the fight all the longer.

We are going to head home this early AM. I feel like I've not really talked with David in weeks!

Going home is a great thing with July 9 around the corner; that is when Grandma Lodgie comes!

Thank you to my dear friend, Keesha. Who has shown that unconditional love over and over to me--whose amazing emails yesterday really set the tone. . .

Fighting this fight--running this race--until I see HIS FACE!

Friday, June 29, 2007 11:01 PM CDT

Today was so emotional.

The Noble family was amazing. Kyle R. Noble Scholarship was announced.

Olivia's belly is huge again.

David is pretty worn out.

Hope may come tomorrow. I can't believe I may see MY HOPE.

Friday, June 29, 2007 7:28 AM CDT

I received word from Greg that the fire is 70% contained and with the skies being clearer water can be dropped on the hot spots! So very thankful.

We moved from Holiday Inn to Cape Codder (long story). I was able to go on the YOUTH activity yesterday to a MARSH! To me it reminded me of being out at my Dad's pond, but the really fun part was to see kids who never get out playing with fiddler crabs. I had to think of a few of our little friends back home and how much they would have loved it. It was hot and Olivia waned but was hooked up as soon as we got back.

The Silent Auction was too funny. The kids get so excited about it all. The iPod did great! Thank you, Uncle Greggie!

Love to all.

Thursday, June 28, 2007 6:57 AM CDT

Ah! The opening reception! What a blessing to see our friends. David finds a friend, Olivia flutters about.

I've had opportunity to meet a couple of moms I've never met in person. Which is always such a treat.

Yesterday I opted out of the RC meeting so I could take the kids down to the harbour for a boat ride. There was a pirate ship which had all kinds of whistles and bells--then a quiet little boat. . .it FIRE TUG! The captain was the owner and very much into educating kids on fire and boat safety! It was perfect. It was just us and another little boy. They gave us binoculars, taught the kids the different parts of a boat, how to give directions off the boat, wind, and even gave them opportunity to spray their own hose! They did a demonstration of MAN OVERBOARD and closed up with knot tying! It was perfect. There was a young man who is taking his tests for the coast guard who led the lessons and a young woman who OLIVIA adored. She saw how well O worked with "string" so even showed her how to make a neat bracelet. Good stuff.

No word about Greg and Kim's home.

Keep praying!

Wednesday, June 27, 2007 8:01 AM CDT

Today is the actual "start" of the conference. People are coming in--Olivia is very anxious to see "people"--so much last night when the phone rang SHE answered it, but not in time. That says a lot.

David is doing great with swimming; O and I took the car and drove down to Main Street and walked and shopped. She was so pretty, people smiled at us--special mother daughter stuff.

Excited about a new day!

The kids had a blast by the Atlantic yesterday.

Thank you Lord.

Tuesday, June 26, 2007 8:09 AM CDT

OLIVIA'S BELLY IS SOFT--HER BODY IS WORKING AGAIN--THANK YOU DEAR HEALER OF ALL!
So thankful for the faithful friends! YES!

We are HERE! We had a GREAT day yesterday despite many concerns.

We listened to awesome "Jesus music" and really had a good time of fellowship. It takes a few days to get into our groove--since we hardly ever really spend time together like this.

After unpacking we headed down to the harbor to eat, take a walk and see the ATLANTIC Ocean! The kids didn't want to leave; it was growing chilly. . .

David and Daddy swam last night in the pool. Olivia and I tried to sit at the edge with our feet in the hot tub but was told only 15 yrs and up; I asked can't she just put her feet in? No. She was crushed and held back tears; she is a PRO at that. Then we went to the pool's edge--she watching David and Daddy--Daddy would take her out on his shoulders--how she desired to SWIM in the pool--but not on the first day of a trip and NOT 1000 mi away from home. I was ready to leave and sat in the hot tub for a few and she said she was too--yeah! So we came back to the room. Caught a bit of "OUR SHOW" Little People Big World.

Olivia mentioned at the pool's side how one day her burdens would be lifted. And yesterday while we on the road she started the whole worship session with Victory in Jesus; I had to think how far she (we) had come--and how we only truly have victory over all this crazy life when we constantly turn it over to Him.

We are excited to see our TPNsupport/Oley friends.

Monday, June 25, 2007 9:03 AM CDT

We took out Olivia's J tube yet again and there was so much that came out, but she is still amazingly impressively distended.

We need prayers of protection upon her central line as some leakage did get on her cap as well as we need relief upon her body.

When she is THIS big it is hard for her to move.

Many of you may already know this but many people of South Lake Tahoe have lost their homes; I've not heard of any lost lives. Thankfully Greg, Kim and Carolyn were in the Bay Area Sunday night. Their house is in grave danger of being lost as well.

This is a hard day for sure, but really seeking God all the way.

We are anxious to get to where we are going--Cape Cod--and that will be today--settle in, and hopefully hear that the fire is under control and all is well with our family in California.

We press on, with sound mind, love in our hearts. Jesus rose from the dead for US--HE IS!

Sunday, June 24, 2007 10:01 PM CDT

Niagara Falls.

Olivia is horribly distended!

Pray for her body to start MOVING!

Sunday, June 24, 2007 7:12 AM CDT

Rejoice!

I feel like shouting!

We saw Lake Erie last night! How marvelous this country is, so amazingly diverse.

I want to ask for prayer:

Olivia's G tube's balloon (has a balloon inside her body which keeps the tube in place) had lost water and therefore started to push through on her stoma (hole) which caused bleeding and much pain. She was afraid to mention it as she thought we'd have to stay home. Something that bothered her for a full day and a sleepless night was "fixed" in literally 5 seconds. Pray she'll be all right and the soreness will GO AWAY and that she has learned a VERY valuable lesson.

She has had 3 times (I can remember) where it took 30+ minutest to get her Gtube back in which also accompanied a lot of pain, stress and fear. It is a very UNcomfortable feeling to have something OUT of you which YOU KNOW you need to have back in--I know many who are tube fed, dependent understand this--I do to a degree being totally dependent on my glasses. I do NOT like when someone takes them from me.

So, Olivia feared (Oh sweet little girl) that I would have to take it out (which I did) and she saw there was some blood (which really scares her) and that we would have to go to Cincy and not Cape Cod.

Also, we are going to be so close to Hope. May GOD totally WORK it out for us to see her nest, meet BOTH children and pray in Natalie's garden.

Pray that Hope can get her work done--and come down to the Cape as I know many would love to see her and Allison. Zachary is so dear to my heart and I'm so excited that we may be able to connect.

Also, for my little David. Who is growing so fast. Pray that although I have to tend to Olivia, I am still his mother and love him like no other little boy. He was who made me a mother. May God continue to touch David's heart, to see outside himself when needed. . .

Pray that we can let go of so many day to day, care to care, life long stresses and enjoy truly the blessings of what God has for us THIS day. Let us start with today.

It is so exciting to see new parts of our country with my husband and children that NONE of us have ever seen.

Anyone ever been to Niagara Falls? We hope to stop there--any tips?

Please keep us in your prayers as we travel; we thank you.

P.S. Miss Marsha--I JUST READ YOUR NOTE which came in the mail. . .you are so kind, full of love and generous.

Thank you.

Thursday, June 21, 2007 7:48 AM CDT

Olivia and I have enjoyed our week together. She has moved through her obstruction from Saturday, it seems.

She is a knitting machine!

David is enjoying chess camp. Charlie misses David while he is gone. He is rather lost without his boy.

Getting things together--moving forward--and pressing on.

Monday, June 18, 2007 6:02 PM CDT

Chess Camp week--the week before our journey to the Northeast for the Oley conference.

David enjoyed his chess camp day; this is his first time going a full day. He learns SO many different parts to chess playing besides just standard chess (which I'm sure there is a name for that type of game). I had prayed he would have someone to eat lunch with, someone who would be his partner if needed, although they are divided into different groups, pawns, knights, bishops, etc. and David said he had "Jack" to eat lunch with him, and offered to be another's partner who was "new" to chess camp. All good stuff. GOOD considering we, here at Bohemian Ranch tend to NOT get to bed at normal schedule type folks--but they both have been bathed and ready for bed since 6 PM! A great EYE opening experience for HOMESCHOOLboy! He is so durable.

Olivia and I enjoyed our day. I began the concept of packing supplies and two kids clothing. Not so bad, until IT dawned on me--that I needed enough supplies for the remainder of THIS week, our travels to MA, our stay in MA and our travels home not to even mention when we get home and the amount of supplies until our next delivery. I have it all straightened out, confirmed with Holiday Inn and even got Olivia to pack her "bag"--which is NOT an easy task for a little girl who knits, crochets, beads, draws, etc. whatever else she can fit into her bag. But all in all, we are looking all right.

Tomorrow is ART day! Olivia and I will drop brotherboy off at chess camp and we'll make our way over to the SPEED and later will meet up with some students for sketching and short tour of some important/favorite pieces. Maybe Olivia will have some time at ART SPARKS too.

A belly report: Big. Not biggest but big enough. She said, "It doesn't hurt, just weighs me down, feels like it is so heavy" but she had such a great day(s)--we've been low down slow motion, but as always such a blessing.

Thank you, God for all You show us.

Sunday, June 17, 2007 12:27 AM CDT

I had to post this. Written by my brother to my (our) daddy.

My Dad has given me much.

First, a love for many things that make America unique. He knows what those are, but stories of walking to Crosley Field and memories of riding behind a steam engine never leave the mind of a little boy.

Second, a love for God�s Creation. Whether it be learning to care for a menagerie growing up, transplanting to Montana and experiencing places as glorious as Yellowstone and Glacier or tending the tilled earth, my memories are filled with so much more than myself.

Third, a love for freedom. My Dad never told me What To Be, but he did tell me Who To Be. He never said you need to be a baseball player when I loved music. But, he did tell me to be responsible. With freedom comes responsibility, and I learned that the hard way too. But, you cannot learn when you are always being told. And I learned that the unconditional love of my parents did not make failure a scary proposition, but one of the adventures of freedom.

Thank you Daddy.

Thank you Papa.

I love you.

Sunday, June 17, 2007 9:04 AM CDT

Happy Father's Day.

The kids made coupons for Dave; they had so much fun making for him.

Olivia so enjoys her knitting class--she finished a purse and made a kitty toy for Izza.

Olivia 'blew up' gradually, anad was distended last night. SO we restarted Zel and get her on her bike today.

Saturday, June 16, 2007 8:20 AM CDT

Olivia is having great days. She is able to nibble eat which always makes her extra strong. And with that we are pulling out the stops; Dave slept with the kids in the tent last night! Those gooses were so excited to be out there again.

The kicker is our screen off of the deck had a huge hole and our brand new loaf of bread out on the deck--our Legendary COON came to visit--YIKES!

Saturday--Knitting lessons. . .Olivia is LOVING them.

Thursday, June 14, 2007 9:31 AM CDT

We did it! A night out in the tent; Olivia in the middle using Uncle Paul's cot he gave us David on one side and I on the other. What fun--the kids told their stories, Olivia told one she heard from the story teller at the Art Fair Sunday! It was SO cute--even David said, "Olivia, that is so good--so cute!"--Daddy helped set it up; he and David, scouts for sure. Dave could hear us from his bed and even called to us--Olivia LOVED that! Charlie slept with us and growled at one point. MYSTERY! How children love that.

So we made it through the night and I feel infigorated having done so.

Today is COTTAGE school day! We'll meet with our friends to do science; can't wait. We've not done "school" with them in a long while.
I've been teaching batiking classes and with all the dyes mixed we'll make a SUN (front) and CONSTELLATION (back) Tshirts for part of our science class.

Olivia's belly is flat and soft--it has been so great since we decided to hold onto as much Zelnorm as we can. We really want her visit to Cape Cod to see our Oley Family to be good--so holding onto the Zel for that time frame.

SOON!

Tuesday, June 12, 2007 6:52 PM CDT

Home again we are.

Sunday Olivia and I headed to Versailles to stay with Papa for two nights and pick up David from his visit there.

The skies there too, were so clear the stars could have been plucked if I jumped, but alas I did not try.

Olivia had a flat soft belly last night when I came to place the overnight cath and hook her up to TPN and Lipids. It brings such a sweet relief. She is "eating" well for her--a small nibble meal a day--she is always quick to pray. . .

"Thank You God for this day, thank You for all we are able to do. . .and thank You that we get to eat, in Jesus' Name"

. . .yes, thank You God we get to eat.

Friday, June 8, 2007 12:37 AM CDT

*Prolific writing has become such a part of my daily life. I steered clear of it for so many years, but now, know it is a way to communicate so much to so many--Who God is in my life to sharing a deeper place of this life for my David and Olivia to know me--who I am--through the written word. They know me through the verbage (oh--some days not so great), and through song, and music I play, but here is a place I share daily times.

For those of you who have been faithful followers--who pray in times of need and laugh with us, cry with us--as dear friends do--thank you.

We soon will be going to Cape Cod for the annual Oley Foundation Conference. We've attended only one national and Olivia and I last fall went to the regional conference; it is a support group for those with alternative ways of receiving nutrition. (www.oley.org) We are growing with excitment as the time grows closer. There is a walk a thon (which we have reached our goal--thanks to DEARS: DEKOLDS of ST LOUIS, Uncle Bill and Aunt Vangie, MISS MARSHA, Grandpa Jerry and Grandma Lodgie) and a silent auction: UNCLE GREG sent an iPOD--with inscription! So, I feel for ONCE we may be a help to this group. I'm not a great planner in these situations--time creeps up and POOF it is too late--so this is EXCITING to finally participate.

~~~~~~~~~~~~~

The above "new" photo was taken at the Monroe County (in Ohio) Fishing Derby for Special Kids. Olivia caught a CATFISH (everone did!), but I so loved this photo with her crunched face from the glare--her bandana, beads, pink dress--she was a sight--in true Olivia fashion.

I can't even remember the last time we had a morning like today. Knowing the storms were coming I wanted to mow, so while I mowed O rode her bike. David called me (he rarely calls me while at Papa's) which made the morning complete. I felt like I had a great morning workout--which I used to do regularly "back in the day" as Olivia would say, when I could leave my children with the folks at the Y and go to a class to keep fit--mentally and physically. After mowing I took to our hill which is over run with "weed trees" that make the view a bit obstructed (oh, there is that word!). I was thinking how although we live in a "neighborhood" of sorts, it is feels out in the country too at times. Being in the back it really does since there are no houses on a sloping hill.

It is quiet here. Peaceful. Home.

It looks as if the snake Keta Jo and I saw last weekend got caught in Dave's old red truck and died. It's tail end dangling down, reminding me of the Wizard of Oz when Dorothy's house fell and only the ruby slippers revealed. I tried to tug it out, but it is stuck and has made for some interesting smells.

Olivia on our star gazing walk last night, stopped and listened and watched the Mockingbird. What a curious creature, how God really makes me smile with this bird. It felt so good to see the bats with their wings wildly wrangling the wind. And last night's sky was of the tint of red and orange which seemed to complete it all.

Olivia brought up the birds. "Remember Mama when I came home from having the flu, and we opened the window and I lay right there listening to the birds and feeling the wind. . ."

That was such a monumental moment. She remembers how those moments felt. I will always. And so will so many others who spend time banished inside a box.

Nothing can compare to what God has created for us, His beloved. No company can mix a scent, sound or touch than that of The Creator.

To God be ALL the Glory
Great THINGS HE HAS DONE.

So loved He the WORLD that He gave US HIS SON!

Thursday, June 7, 2007 8:36 PM CDT

VCUG and Renal ultrasound went relatively well. Olivia clammed up, but as soon as we were finished she was back to her talkative self.

We hit Rookwood Pottery Restaurant which now has a different name then the Krohn's Conservatory as it was still open due to the butterfly, but since we are not photographers we could not be admitted.

Dave, Olivia and I took a good long bike ride; Olivia did SO well! After a day like today, it is very meaningful to watch the little girl petal and work and make it up the hills. She and I worked in the gardens and then it was a walk to see Venus.

Beautiful days.

Wednesday, June 6, 2007 7:56 AM CDT

Olivia has a FLAT belly, but she is very nervous about tomorrow's VCUG/renal scan (both she has had but doesn't remember)--please pray for her.

Once again I am amazing how God can bring peace and comfort during times of sheer overwhelming circumstances.

Good things are happening and in the shower of rain and dark clouds it was these things that God kept showing us--all.

Darla was in town. Dad was being discharged; she helped us get him home without having to drive! It was a bizarre day filled with many bumps in the journey, but the fact Darla was in town, Dad was OK, and Olivia's dark urine cleared up after a day of fluids. . .are all great blessings.

We were able to have relaxed times with Darla as she still went into her work and meeting up in the evening. Today is her birthday--HAPPY BIRTHDAY DEAR FRIEND--thank you!

The very interesting part of this story is how Olivia reacted to Darla. As many of my friends know, Olivia has been silent for months towards them, not speaking but still extending a crochet to them saying "I DO love you"--

She had gotten to the point of not even speaking to Mrs. Robin during piano; I believe she has come out of it, praying she'll continue to grow in this area.

I found someone to teach Olivia her textile skills, one for knitting which will start this Saturday and another for hand sewing and crocheting which will start in August. So, on that front she is very excited to learn and have her "own" thing--and it is something she really enjoyes.

I have to say I didn't handle the last few days with the graciousness and hope within me--I do feel so much better after two decent nights sleep and a good nap yesterday. Sleep is imperative. Counting one's blessings is more than imperative.

It is the Presence of Your Promise

and the PROMISE of your Presence

It is the Presence of your Faithfulness

and the Faithfulness of your Presence

And it brings me Joy.

Really brings me Joy.
Fills me with Joy.
(Kevin Prosch)

Monday, June 4, 2007 2:32 AM CDT

Art show was beautiful. I love my students! Photos to follow.

My Dad called the night before saying he was having some problems; Dave ended up taking him to the ER at Floyd Memorial (10 minutes away from our house!).

The kids and I hung out at Miss Donna's today before heading over to Papa.

We think he'll come home (to us) tomorrow night and stay at least ONE night here then the kids and I will follow him home on Tuesday.

So, it has been exciting as usual here.

Olivia has her VCUG and renal US Thursday. I was thinking of rescheduling so the kids could do something, but now I think we have no choice. Dark dark urine tonight. Need her seen by urology.

Gearing up for Oley in just a few weeks. YIKES; I've not even planned anything other than reservations at the final destination.

Knowing He is right here...is awesome.

Thursday, May 31, 2007 7:01 AM CDT

Where is MAY?

It was a summer month, not a Spring and with the daisies already blooming makes one wonder what July will look like.

Yesterday's first portfolio day went well. I had two helpers and they got all the work mounted which needed to be besides their own.

A lot of good work, will make for a fun showing.

The kids and I planted annuals for punches of color and cucumber plants which were raised by "seed" and given to us by an art student yesterday. What a wonderful gift--and how much we love cucumbers for their beautful vine, flower and fruit!

So the kids and I planted quietly together, David's veggie garden is looking very good as well as flowers. Olivia was pretty distended last night, but I could tell the joy of flowers and soil and the occasional passing by worm helped so much.

Day 2 then tomorrow we set up the show and Saturday IS the show.

If you are local and would love to see some student art work, and I believe I'll have some of my bisqued (non glazed) clay pieces as well as three of my paintings (two still in progress) to show. I've asked my friend to show hers as well. . .:)

Graceland's APEX
1-3 PM

There will be punch and delighful dishes to nibble.

Monday, May 28, 2007 8:18 PM CDT

My family is home. They had a wonderful time visiting; Olivia said they even had Grandma Bert as a BEAUTY QUEEN! How fun. SO thankful that we are able to visit them.

Today was my last harrah in being busy about and I lost steam, but still got much completed.

I think the one thing which sticks out was cleaning Olivia's disaster of a bedroom, with clothes, purses, shoes, stuff animals, Polly Pockets, "Bobbleheads" AKA Littlest Pet Shop, BEADS BEADS AND MORE BEADS which had stumbled across her floor. Since she has been sleeping in the big bed with me now for almost 3 months her room was more of a dumping station/play room gone wild. But it was the purses with little coin purses filled with broken crayons, beads (did I say BEADS?), and her Jpillows and little note pads, oh yes, and her YARN. What a funny girl, made me ache for her, all of them to come home.

It is a strange thing, rest--sleep--quiet. Going to get to bed early tonight as this week is a big 'un. Saturday is my student's art show and all week long we'll be preparing for it. Work, but lots of fun work.

Sunday, May 27, 2007 8:08 AM CDT

God is so faithful, so enduring, steady, ready and true!

The kids are in St Louis enjoying their quiet get away with Daddy seeing the DeKolds of St Louis; I only spoke to David yesterday and that was in the morning--oh yes and Olivia briefly as Daddy was still sleeping and she wanted to get MY approval to stop Lipids, clamp line and take off Lipids.

Keta Jo has been my companion who accompanied me to "hair" which Miss Anita braided hers as well-and to the clay studio so I could reorganize my cubby and pay Mr. Norm and give Miss Kj a tour! She is good easy company--not a chatter box, unless I want it--just easy to be around, not taxing or taking too much energy on my part--which is good. And gives me time with one of my STUDENTS!

On our return we hit the basement. I'm slowly turning my basement into a small art studio, classroom so it can be used to teach small groups of artists and will use it for some of our school days. I've come to the realization yes, we may have a school room, but our kitchen table, diningroom table, big bed are all places we learn from our books.

It was such a peaceful night--and as Kj and I were organizing all the art supplies Charlie who was behind the house with us jumped out of the section of dried leaves and earth to the black top--we walked over thinking he had discovered a lizard or skink, but no--it was a 3. 5 foot long BLACK KINGSNAKE! It was a BEAUTY! And the kicker is--Keta Jo wants to be a naturalist--and was AS excited as I! It went into striking pose, even shook the tip of tail like a rattlesnake would (that was my clue as to it being a Kingsnake)! It was a little smaller than my "Queenie" at full size--"Queenie" was my South Florida Kingsnake I had until after David was born. We gave her to a lady in Dayton Ohio who kept reptiles as a ministry! "Queenie" was beautiful and because of that was easily handled; she probably is remembered today by many students--preschool on up--INNER CITY at that! NEAT!

Then I kept hearing a bird--Kj said, it is probably a mourning dove--and I'd never heard a dove do that--and indeed it was!

Then we rode bikes with Charlie and Kj started singing a song about the gibbous moon--which is waning. . .so thankful that the kids are learning--life long details God placed around us.

They know more about astronomy than I ever did--not until now (teaching) did I truly understand parts of it and to really mediatate upon this fact can blow m head off my shoulders!

God as the Master of ALL--when He CREATED all of this--from 3-D to gases, liquids, solids, to living, moving, feeling, thinking beings. . .to other forms that sing to us, purr at us, bark for us, swim around us, and the amazing green parts with colors attached--a sky which unveils a new picture every day. . . all of it--whew.

Truly amazing.

And He still has time for me--and you.

Amazing Love.

Thursday, May 24, 2007 1:30 PM CDT

Home!

Fishing Derby, KMart with a Kboy, boys playing fun, flowers, airplanes and even those quiet moments of talking with friends--then off to Papa's for Reds game.

Olivia is still pretty distended and the heat has added another factor, but she is coping and happy.

Glimpses of moments which are heart keepers would have to be Kody's hug to Olivia when we were leaving. She told me in the car--he hugged me and I think almost kissed me!

But for now, time to repack for a trip to St Louis to visit Dave's folks. I will stay back and regroup.

Time to rest.

Thursday, May 17, 2007 10:43 PM CDT

Clinic was uneventful on the medical doctor kind of front, but regarding a little girl making decisions it was a very eventful day.

We did our usual briefing with Nurse Gerry then I remembered our talk a while ago concerning tubes vs. buttons. Olivia's two tubes can make for a 'lump' as she calls it under her clothing. She opted for practical, comfort so far, but now Olivia (like all of us?) would love to not have that protruding from under her clothes--how many times she has been asked what is under your shirt; I'll not know.

I mentioned it and Gerry the gem that she is talked about it and got a sample/teaching button then a baby doll which she let us bring home. It was major. While Gerry was out of the room Olivia hinted she was ready today to take her tube out and get sized for a button. WOW! POW!

After talking with Dr. K. who managed to survive the CRUISE (without us:) and is back--thankfully, Gerry took out the J Tube and sized up for the button and put in the button.

Of course there will be a learning curve for us all--Olivia had a button to what seems like a 100 years ago, but that was for feeding, not for venting and now we'll learn the when tos and why tos.

I think the one thing which sold Olivia was having the CONTROL to switch out to a tube if needed and if she is feeling well and NOT distended she can stay with the button. Kind of like having two pairs of glasses. She is such an amazing trooper--quiet tears came out--lots of kisses on her forehead from her mama who had her own quiet tears. The thing that is so tender is Gerry allows us our private moments even when she is right there. I try not to think about what CCHMC--CNC clinic would be like without her.

On a side note: She shared that she was once called to the Cincy Zoo to help with a monky who had a c-line for nutrition!

SO if all this goes well, off to a G button. But I'm sure that'll be a while, but the G will really take that lump down, although those of us who really know and love her don't even see the lump in the clothes.

Tomorrow art and then we are up to Cincy/Dayton area to spend time with support friends--seems silly to call them support friends, but that is how we met and truly they are support.

TPN rules! :)

To Jesus.

Tuesday, May 15, 2007 7:53 AM CDT

Riding bikes, singing songs and reading books.

Dave came home to scoop the kids and run to the bike shop. There I met them and picked out bikes--with gears and hand brakes. They both are completely in love with their bikes. Olivia sang her songs as she rode; she is so very happy.
David announces which gear and speed he is using as if he were in some sort of space craft. We took time to see Venus through the telescope.

Olivia is huge at night, dumps through the night and is soft bellied in the morning. It has been that kind of season.

Clinic on Thursday.

All Hail the Power of Jesus' Name.

Sunday, May 13, 2007 8:17 PM CDT

After such a week, I've found myself so wound tightly, a quick call from my own mother who is at Wild Animal Park with her son, daughter in law and sweet little tiger of a grand--daughter--it was so great to hear their voices, and to later see photos of my mother feeding wild animals. True love, so thankful she is having a great time. I so miss my family!

Here in Southern Indiana we opted yet again to stay home from corporate church for home. We read from Proverbs and memorized another passage. Glory to _THE_ King of KINGS!

Then from Olivia's directing--a bike ride to Black and White Kitty's house--which we did, all of us. It was remarkable as we then came home and took off the training wheels.

Both rode without. It just happened. Right before our eyes. So we all rode Lee Drive together--round and round.

The kids are so excited. It was a great day for this to happen--after such hard times, big belly blue kind of days, pressing on--far more than I'll ever know--Olivia was able to truly shine--ride. . .she is one very tired girl--she did stop on her own, David kept riding Olivia's bike as his blew a tire. O retreated to her bedroom, beading--her new "thing"--and I GOT a necklace from my dear daughter!

So hungry for God's Ways, not mine.

Saturday, May 12, 2007 8:04 AM CDT

Our prayers have been answered. This morning Olivia has a soft not so distended belly.

The last few nights have been incredibly difficult.

Olivia loves "Little Women" and has become her movie of choice when times are hard. We were watching it the night we took out the G and J and David pipes up "This movie is too dramatic for me" all in the midst of Olivia's crying out--taking the tubes out is scary--especially since G has been known to be VERY difficult to get back in--but it slipped right back in.

Olivia tends to be drawn to the plight of others, what I call the fullness of life, whereas David doesn't, not surprising.

Thursday, May 10, 2007 9:38 PM CDT

Once again Olivia is at a record distention size.

We took out J tube and G tube tonight.

She has a VCUG and Renal Ultrasound in June and of ALL days the urology appointment on DAVID'S 9th birthday; I'm thinking they'll want to see her earlier than that with all the break through UTI.

We are asking for God's help.

Monday, May 7, 2007 11:13 PM CDT

Distention is down--lots of CRAZY sounds coming from Olivia's belly tonight.

Amazing Grace.

Olivia recognized that God had relieved her. When I remarked about it again tonight after she was all hooked up for the night; she had that Olivia quiet smile which if you didn't know her--would maybe pass right on by. . .

We were up and at 'em--gathering goodies for Tuesday, and got to stop by and see Aunt Becca. O and David took a hike on the hill when we got home; she did retreat to the bed and "her shows" as she calls them, which was fine. She needed rest as tomorrow we head to the zoo to celebrate Livi's birthday (the little one!).

David planted for most the afternoon today. He was hot, and tired from a full weekend, but was determined and FOLLOWED THROUGH with his gardening.

He planted tomatoes and lots of seeds of flowers.

David and I have been taking late night star gazing walks. It is so amazing how when we stop and look at God's masterpiece how it heals. Being drawn together--in awe of something far larger than any part of us. David and I had been at odds prior to our evening walks, his struggle of growing pains and I with reeling him in; it really has been a major breakthrough over the last month.

Venus is very visible in the Western sky--and Mercury will be visible May 17 for 15 minutes starting at 9:30 PM. We are having a hard time with some of the constellations, but with the moon toned down we should be able to see much more.

The beauty of the skies. . .

It knocks me on my knees.

Monday, May 7, 2007 8:33 AM CDT

I'll never get used to the kind of distention Olivia endures.

It is hard to understand and describe. There comes a point of pure concern when I think she can not be any bigger.

She was amazingly happy and full of good energy despite it all; she was hooked up to fluids all day which I think kept her balanced.

After I took out the J tube (2nd time in two days) she did have relief! Things started to move a bit, although she is fairly large in distention.

So thankful for dear friends, praying friends and family.

Thank you.

Saturday, May 5, 2007 9:54 PM CDT

Sunday AM--

Olivia is at record size in her distention through her abdomen--It is amazing she is even able to breathe as I'm sure her lungs are being pressed--she is not well--concerned and asking for specific prayer for relief on her body.

~~~~~

It was a rough beginning; Olivia asked if we could cancel today!

BUT once her dear little friends arrived (It was Derby Day)--we all had such a great day.

Sugarbelle was festive, while Isabella hid the WHOLE time. Charlie followed his boy.

I relish in God's gift of friendship in someone 8 minutes away.

Thank you for your prayers. Olivia had a great day.

Thinking of Hope.
Praying.
www.caringbridge.org/ma/natalie

Friday, May 4, 2007 10:18 PM CDT

Olivia is still huge.

It is so disheartening to see her so full of air and fluids. She is obstructing for sure as she has many signs of it.

I even took out J-tube tonight; she didn't like it--none of us did and with it came little relief.

His Mercies are NEW every Morning.

I miss my Mom terribly.

But God is so faithful with His gifts which can come through an email from family so far far away, or a calming phone call from a dear friend.

Trying to press forward--towards the Prize.

Thursday, May 3, 2007 9:26 AM CDT

Olivia blew up like a balloon all day yesterday--slowly growing to her gross distention proportions--leaking, the whole nine yards, but a GOOD warm shower, getting all cleaned up and venting really helped things--even had the ostomy working again!

This is what is meant by the rollercoaster ride. It is BIG and little, WIDE and narrow, UP and down, eating and not eating, wearing a G and J bag and not wearing a G and J bag, needing fluids and NOT needing fluids, having a UTI and NOT having a UTI, pain. . .and pain? But with it all still being TPN dependent, being cathed and wearing the ostomy pouch, and having two tubes pinned to an under garment!

Isn't it amazing, GOD'S GRACE?

Tuesday, May 1, 2007 10:08 PM CDT

NEW PHOTOS ADDED May 1

David decided on the balloon border!

MAY 1!

What beautiful days we are having. We started the day off with math, breakfast, violin and piano--singing praises and a bike ride! The kids rode while Charlie and I jogged behind (JOGGED? WALKED FAST!). Our main zip up and down the hill road, Fairview Knob has been been under ROAD WORK, so the kids and I walked down the the BIG curve to see--alas, NO ONE was working on such a fine day. We concluded they are not in a hurry to meet the folks on the hill's needs.

But we collected rocks and imagined all sorts of things, Charlie's tongue made it an easy way to get home, David wanted to go on and farther away from home, but I know Olivia would not have much left if we did, so, thankfully out of pity to the dog, a long tongued, panting dog--we headed home. It wasn't the bike ride David so desired, as I too, could not bear to go in and we didn't--they each cleaned out their rag tag flower gardens and I gave them some Sweet William, mint and Sedum from other parts of our yard.

Then off to Cottage School where we studied more.

Home and more bike riding and star gazing--planets too?

To bed and tomorrow again--

For THESE are the DAYS GOD has made--may we cherish them so.

Sunday, April 29, 2007 5:11 PM CDT

Beautiful days here, blue skies with clouds floating on their own distinct course. Dave and I both decided to stay in again this Sunday and read from Proverbs. We all took turns reading and some good discussions. It was timely once again and showed me a way to help direct the kids.

Olivia and I headed over the clay studio and dropped off some earthenware. I realized if I'm going to get anything to the folks at Oley I'd better STEP on it.

I worked in gardens which hadn't been touched all last year and feel like the OUTSIDE has a chance of looking decent. It is such a conversation working the dirt, stones, plants--I think back to my childhood, to important people in my life and ended up cranking up some worship music out of the truck at the end.

David and Olivia rode bikes back and forth on the street, Charlie followed right beside. I was impressed to see Olivia so active, but came inside to see her all ready for the second half of "Little Women"--her favorite movie right now.

New week ahead, need to call Urology, make sure CNC is ok with the date I gave for clinic, this and that--praying for another productive learning week.

To, ALL to JESUS!

Friday, April 27, 2007 7:28 AM CDT

Yesterday morning we met with Dr. Nassim, our PED. When I think back to HOW I even met her and the events of life how can one not acknowledge our Heavenly Father?

David was examined, Olivia too. We had so much fun, joking, laughing--it is crazy but we really had FUN at the doctors--have to--we go so often! It was especially fun as David was in center stage, so I played that up a bit. He was so helpful in answering questions concerning HIS asthma meds. He took it and ran with it.

We have a great game plan and I feel very at ease, comfortable knowing that we are CONNECTED. It was a matter of our saying what we needed--isn't that a basic truth?

After zooming down the hill for Science and History (even ART!) the kids and I got home to PAPA being here! We had a relaxing night with him, O got her big bath and all that goes with it.

Olivia and I were invited to a Mother Daughter Banquet tonight. The lady who is hosting the table is a precious Gift. She knows all about caregiving and what suffering looks like in our human form. I'm just so blessed that we will be able to attend. This will be so good for Olivia, me...all of us.

But alas, both kids are in a coughing flare, stuffy nose--I have to admit it is a tiny bit concerning as the flu is still lurking closely.

Wednesday, April 25, 2007 10:06 PM CDT

Ah, so the little girl is getting more and more distended. We are on day 5 of her antibiotics and there is still extreme discomfort when being cathed at night.

Tomorrow we'll meet with her PED; will be working on some game plans and check in on David boy and his asthma and allergies. 10AM appointment.

We have been hitting the books hard, working through our history, and science--now off of planets and onto the Sun. I feel as if I'm learning things for the first time. It has been quite a journey.

Papa joins us tomorrow as he'll stay home with the kids while I teach art on Friday. So they'll have PAPA school on Friday!

Monday, April 23, 2007 11:55 PM CDT

Thank you for all your sweet birthday wishes and prayers!

Olivia's levels are good. With certain antibiotics blood is drawn (from her central line) before the med is given and after. Drawing blood from Olivia's line has always been easy, meaning a good blood return and kind of fun for us. I just don't like having to drop it off at the lab and dealing with the "lab". Otherwise it is fairly simple.

We had a very full week last week and topped off with a major weekend. Saturday we hung out with favorite people, very low key and quiet, which was what I needed. Keesha made a fun cake for Olivia's birthday (which I had not done yet!)--it was so cute and Olivia felt so--loved. I could see it on her face.

Sunday was _THE_ Blue and Gold Banquet--the LAST RAH HA for Cub Scouts this year. It was like throwing a party for 200 at someone else's house, but the good part was I had GREAT help, #1 Keesha kept Olivia at her house where she played and had a less stressful, quiet day. I ran over to give MEDball and all was very well--the little girls decided they rather stay there than come--which was great. Olivia and I have decided Keesha is worthy of learning "cline care" THIS IS A HUGE step for O. #2 all the dear Scout helpers!

But it was overall a great day which left us all depleated for Monday. Having to give the antibiotics every 8 hours, etc. can make for less sleep too.

I'm all for resting as David is congested, Dave and I whipped, Olivia looks greatest of us all.

So, now time to regain some energy again to face the next horizon. Looks like Urology is up on the docket along with another clinic in a few weeks.

Birthday PHOTOS to follow. . .

Friday, April 20, 2007 7:32 PM CDT

I had forgotten something.

When Olivia was first being prodded and poked and cleaned out and scoped at the tender sprout age of 18 months, Dave and I would ask her--"who loves you?" and we would list God first and then all the people we could name even down to Papa's kitty, Midnight. It would calm her.

Last night before the curtains were drawn to begin the Springboro High School Spring Musical, there was an announcement! We would like to wish Olivia DeKold an early birthday!

I whispered, "so many love you, Olivia" . . .

Clinic was clinic. Talking through Zelnorm, weight management, the fact that she looked AMAZINGLY flat bellied with a style of "Natural Bohemian" there was the concern of the last UTI coming too close to the other and the "Breakthrough" from the Furadantin she is on to prevent UTI--I knew it was time for Urology and spent a night in the depths of CCHMC's urology website listing making sure we were with THE best person. It was great as always and always to see Gerry, Olivia's clinical nurse--Dr. Kocoshis in his own manner and Tracey, and Dr. Alex--fresh back from BERLIN! :) So David got to hear his accent. OK, so yes, it is full of much learning. All in all, still waiting to hear about Zelnorm, Dr. K and Nurse G are starting the mounds of paperwork to make it work.

Off to the Vernon Manor an old Cincinnatian hotel where we tend to stay for overnighters there. It is in the heart of where I lived for many years. Many memories, although they are so far in the past that they are like distant fogs on each of the Seven Hills. Now, replaced with new smells, thoughts and direction--the kids begged to stay in--we did and it was wonderful.

We did dress for dinner and went downstairs. I love being with my children. At one point Olivia stood and asked for my hand and twirled around, happy.

The next morning we headed out to find decent breakfast and had fresh bagels then the Children's Museum. We decided if O is having a Great day let's run with it--and they did--for hours! Having the time of their life~ back to Vernon Manor for a bite and rest before our drive to Springboro.

Our time visiting with the ALL of Stephs Kboys . . . men was the needed shot Olivia so needed. To be in a house where TPN in the fridge is the norm, and IV poles perch in the corners, backpacks and TPN drug around. . .Kody, steals my heart each time--which I'm sure he does with EVERYONE, and Killian with his ways makes me want to dig deeper, and then Korey the ACTOR we drove to see--and it is inspiring--all of them--the WHOLE family. Olivia loves them all--and especially relates to Steph--Olivia looks forward to that special day where she is going to be FLOWER GIRL! More on that.

So during intermission Olivia stands up, lifts her dress (she had tights on) and takes her bags off her tubes; I mention that she just lifted her dress--and she commented that she didn't care! WOW! She was so not ashamed of ANYthing. Like I said, SHOT in the arm, thank you Kenny, Steph and all you KBOYS--can't wait to see you...as soon as possible.

Up again this AM, moving a bit slower as we got in late, but headed to Papa's on such a blue sky day.

The kids, Charlie and all of us had a blast back at the pond. It was cut short when Dave called my Dad saying that Nurse Gerry had called and the 48 hours on the urine culture was positive--JUST on the edge of being done with ABX (antibiotics). This is concerning. It knocked me on my butt to say the least and thankful my Daddy was there to hold my tears on his shoulders and I his.

So Dave took O to Floyd ER to administer the first dose. I think I'm in a not so nice mode right now with people in general and would blow any kind of "do unto others" at this point. I had wanted to talk with PED this WEEK at our appointment to get this sort of thing set up--oh well, how about on a FRIDAY...and on one's own birthday to boot, but again, I'll follow HER lead as she dressed to the Olivia hilt--and was so excited about going OUT with her daddy--so WHAT if it IS the the ER to get a first time drug.

That is my girl.

7 years ago she came on a stormy night--weighed in at 8lb 10oz, nursed like a champ for 5 years! Always to be my baby.

Happy Birthday, Olivia Blinn!

Tuesday, April 17, 2007 9:18 AM CDT

! Please keep praying for many physicians to NOT grow weary in their fight for ZELNORM !

Olivia seems to have leveled off; She and David played outside with Charlie.

We didn't get to school until night and it turned out to be a huge blessing.

The process has started for seeking a wheel stroller for hard days. A friend sent some pics of her son in his--can't wait to show Olivia. She is ready for it, it isn't anything negative, but a positive direction which will allow ALL of us a better quality of life--back life! :)

To Jesus!

Sunday, April 15, 2007 9:12 AM CDT

Praise the Lord for FULL Salvation, God still is UPON the THRONE and I know the BLOOD STILL REACHES deeper than the stain has gone.

These words from an old Lester Roloff song. One of my favorite Jesus singers of all time. He had a home for girls who were pregnant down in Texas. When I was young in Jesus I went on a missions trip to Mexico with Rodger Randall and saw this home. I believe we even spent the night. It was such a wholesome believing place.

Many have asked why Zelnorm, what does it do for Olivia? I think it is a miracle drug, a God given tool for Olivia to not be in line for something more hard, life path altering kind of thing. It is designed for women with Irritable Bowel Syndrome, but when I read on TPNsupport about a pre-teen boy with Hirschbrungs having success with Zelnorm in regards to HIGH output I brought it before Dr. K. It was in the midst of Olivia's VERY high output season. We were having to hydrate her above and beyond her TPN (then maybe 1500ml per day), the concern of such a dependance on a central line for so many hours in a day, the possibility of infections, line access, etc. All was pre concerns as Olivia (Lord's PROTECTING POWER over her) had only had ONE "line" infection and that was during her first month home with a PICC line (not a central line, but a catheter placed in her arm--sometimes used for short term iv access--but we know those who have had one for long term as well).

What we see OFF of Zelnorm is a bit disturbing. Output (ostomy) is MUCH higher, for those of us without an ostomy it is like having diarreha every day, all day--all night.

BUT--An email was posted on TPNsupport the STEPS needed for FDA--I sent to Dr. K and he said he'd call first thing Monday morning.

There is something to be said about dear doctors. There is something so special about this relationship.

Specific prayer for his phone call to FDA, for two little girls I have been following for some time and feel very connected to--Miss Samantha--and Miss Maya. Olivia and I love looking at their smiles. Olivia so wishes she could meet them both.

Dear others--we lift Hope and her family to the GOD and the NOBLE family.

Darla too, as Matthew's day is a comin'....April 22. . . .

Oh I want to see Him--Look upon His Face--there to sing forever---OF HIS SAVING GRACE.

All to Jesus I MUST surrender.

Saturday, April 14, 2007 7:46 AM CDT

EVERYONE is 200% better.

Dave slept with Olivia and she has already unhooked her lipids and talking to Izza. David declared he feels SO much better--he'll be wary of eating. AND I got a full night sleep. Dave went into work today in preparation for his Friday deal. So, maybe we'll live Friday on a Saturday?

Great news! I can hear the ANGELS SINGING--this is truly a major blessing and praying that it is true and will come to fruition in that Zelnorm is being considered for COMPASSIONATE USE! It looks like Dr. K will have to call, etc. PLEASE JOIN US in praying for this--Olivia and MANY other children's lives have been altered from Zelnorm.

It is subtle when one is slowly declining.
I was reminded of this while viewing a photo of a mom and her two boys in a hospital bed. One, requiring a 2nd bowel transplant and the other son, (older even) clinging to his mama--both boys asleep, but the mother's eyes acutely awake. The "well" son missing his "sick" brother, was the caption. It was an abrupt reminder that chronic illness, medically fragile, or the medically challenged (however it is labeled or explained) touches the core of each and every family member.

And then the family as a whole must quiet down. Slow the pace and circle the wagons around the camp--to pray, heal and renew the plan. It is a time to grow in confidence as to WHO we are in God and His plan.

We are far away from our extended family, which doesn't seem unnatural to me in any way having never lived in the same state as my Grandparents, Aunts and Uncles or Cousins. But there are times when it quickly steals my breath knowing how far my Mom is--but with her having been here and done it--I can tell her and she knows it. This is her usual Spring visit time. With Olivia's birthday approaching we would normally have Grandma here soon. She has a doctor's appointment regarding that HEART of hers April 23 at which point we'll have a better scope as to when she can visit.

Thankfully Charlie has stepped up lately and been David's playmate outside. Olivia hasn't the energy nor the desire at this point.

Olivia said she was SO tired last night, "I'm not fully recovered from the Flu yet", she spoke of her "hot lava" in her throat from the night before. When she is having reflux it is "hot lava"--Thursday I was quizing her on her "or" words--she had written 15 of them and I went on to 'pre-quiz' her with the remaining--she did well, but commented: "I'm not familiar with those words yet". I can't believe she'll be 7 years old. That she is reading, writing, singing, playing piano, twirl dancing when energy allows and eating. EATING. She ate 4 pieces of DRY toast yesterday.

My daughter ate yesterday!

Thank you, Jesus. Tears of relief, hope, and believing.

Friday, April 13, 2007 3:01 PM CDT

It was horrible last night to come home from a very productive creative time at clay studio to a boy vomiting. But WAIT, it gets WORSE--Olivia too joined in and vomited all night as well. It was a night of fog, trying to give David the TLC and making sure Olivia was all right too. She vented her G tube so many times and vomited more times than I can remember.

We all slept from 8-10:30 AM but I was awakened by Sugarbelle's meow, which sounds like one of the kids saying "mama" --then Izza decided to play the piano, to be honest, sounded pretty good!

Olivia played with her little animals in her room while David got into the big bed and slept off and on. . .That is one thing about both D & O, they know if someone is sick it is quiet day--and let the sick one rest.

I think O's vomiting is more flare/pseudo obstruction. I would not even be thinking twice IF David hadn't puked all night and into this morning.

We had two good days, a bit of momentum building only to have us coming to a screeching halt.

I know things could be worse.

Thursday, April 12, 2007 7:24 AM CDT

But alas, there is always another storm right around the corner. When I returned from the clay studio, David had vomited in his bed. He is one hurting boy. Dark rings under the eyes--no sleep and he is NOT the professional puker that Olivia is. Olivia is the worlds best vomiter. David has missed the BIG hospital PINK pan (I'm talking the one where all the toiletries, etc. is in when first admitted)--Olivia can get every last drop into the small kidney shape, juggle a FULL one while still puking in a empty one.

Going to try to sleep.

After all the current storms which Olivia has endured, it was such a blessing that after the storms yesterday we had not one round of rainbows, but two--and both were double. What a Promise God gave us through the rainbow--how we take it for granted!

David took this photo. His artist eye is coming around. He decided to take the "date" off of his photos, it was a hard thing for him to do as he wanted to know WHEN the photos were taken. But he finally saw that it detracted from a great shot. He and Charlie enjoyed the after storm, early evening, waiting for Daddy to come home time yesterday. Olivia was busy braiding, her new things--with different color combinations.

The new photo of Olivia is by Daddy and I had fun in iPhoto with it. She had one of her best days in a long while in terms of recovering, her body seems to be healed from the flu and now to see how the UTI and low in Chloride has resolved--Labs will reveal this next Wednesday.

We went OUT to breakfast yesterday and then ran errands. One being Feeders Supply a local animal supply store. Charlie loves to go there. The kids love to visit with the kitties.

We did night school yesterday. Olivia is just maybe a diligent week away from completing her 1st grade math. It blows me away how (it is the younger child thing for me--MY BABY!) she is computing, figuring things out; she loves math! She is doing very well with her reading--I hadn't heard her since before she got sick and wow, now she is really reading! It happened the same way with David--I took a break at listening to him and POW!

We are reading through Proverbs; I love to hear children read GOD'S word.

DAVID is less than a week away from finishing his Language Arts book! He is over half way through his math book. It is 3rd grade math (I kept him in the Indiana age frame, but now I think he would be considered 3rd now--a VERY too young 3rd being right on the cut off date--never good for boys!)--ABeka is pretty advanced and he is doing more than the PS kids in 3rd grade, so I backed way off as he was getting a bit frustrated. We are resting on what he has already learned, drilling on mulitplication, practicing division. I found him at 12:20 READING Swiss Family Robinson in Olivia's ROOM last night! He is a good reader, loves information and novels.

So, we'll keep plugging along. It is hard to have a set plan around here. it is such a foreign concept to have a scheduled vacation/break. If Dave takes off, it is usually around a hospital stay, if we take off generally it is due to sickness--the gotta do something about it kind. And decluttering the not so needed stuff is essential as well. So year round "schooling" lends more to my philosophy, life is learning--learning is life--how can you put it into a time frame from this time to that time?

Pushin' on--

Tuesday, April 10, 2007 7:51 AM CDT

Olivia continues to gain a bit of speed.

A season of endings is upon us. AWANA has 3 more weeks. Cub Scouts' Blue and Gold Banquet is April 22, which I'm pretty much the one in charge, but I have plenty of more than able helpers surrounding me. This school season art classes will be over after June 2nd's art show. I was more than at peace with handing over AWANA, and now Cub Scouts as well. Can it be? It was a great growth season for us all, but now the direction has shifted.

Our weekly scheduled events will have diminished to only music lessons, and our cottage school with the possibility of David participating in a homeschooling Track and Field group. This could be an answer to prayer, but I want to be wise before jumping in and go alone and see who/what/where/ etc. There is way too much at stake to blindly agree to anything at this point.

With any ending there are amazing beginnings. And having cleared the hours from scheduled have to kind of experiences it makes way for more imagination, relation building moments.

I'll refrain from too much more commentary on this subject.

We continue to enjoy our little cottage school reviewing over the planets and reading through our history books. We hope to take the kids to see Mr. Norman's clay pieces this week.

An amazing side note: Yesterday as I was driving our McCue girls to their home (Dropping O, L and L off during scouts) and taking KJ and D--I put the CD that Winkie gave me (I've listened many times before) of Jean Pierre Rampal playing Mozart. . . prior to that they were all busy talking, being silly--as SOON as I put it on (more for MY listening pleasure) they ALL got quiet; looking out the windows and listened. It was so peaceful and made me think of MTT's comment about how classical music is for all--it talks of life--and how this piece was pure joy, a child like joy. . .

Pressing on.

So thankful.

Sunday, April 8, 2007 4:14 PM CDT

Yeppers, good ole ECOLI UTI.

Praying all is having a blessed RESURRECTION DAY.

Recovering from Flu, no Zelnorm, and UTI. . .not a good combo, not to mention TPN formula was off....

BUT praying we are starting to climb that hill...

Thank you, Jesus.

Thursday, April 5, 2007 8:05 PM CDT

Friday PM--

UTI.

Check out view PHOTOS for Olivia in her new glasses.

Friday AM--

Before Olivia went to sleep I asked her if she had any questions about clinic.
1) What if she didn't take the new medicine?
2) Would she have to take it for the rest of her life?
3) Wasn't there another alternative to the catheter in her leg? and the 2x a day shots?

She seemed almost giddy silly over it all.

(I'm all right, MOM!--love you!)

Olivia has her adorable new glasses. Photos to follow. . . .

Thursday Evening--

Thank you for all your prayers. There were times today where I just felt God's care all around us. Olivia's caregivers are so incredible.

I'm so thankful for their steadfast commitment to caring for Olivia and children like her.

Tender kindness goes such a long way.

We were a bit late, which was fine because they were SWAMPED. So we opted for Dumbo; O and I held hands and what a great story.

Zelnorm issue is so frustrating. We bounced that back and forth and all around, so I'm going to write some letters.

We talked about getting a stroller--wheelchair type thing--I know many of our friends have them already and I NEED to really research this before we start pulling insurance's chain.

She was 20.7 kg and 115.5 cm. We will be back in clinic in 14 days to see what is going on. Close watch is in order.

Olivia was so distended, quiet and overall miserable and elicited a lot of empathy from everyone who touched her.

So we'll extend our April 19th stay to the 18th--and have clinic then. And begin a birthday celebration. . .in Cincy.

No changes to TPN as she has gained from her stay, it is a matter of getting her over the flu hump, figuring out what we are going to do in lieu of Zelnorm. . .and the option is not what any of us wants.

I shared with Olivia that Spencer has these kinds of "shots"--so we may need to put a call in to VA fairly soon.

Keeping the faith
Running the race...

Fighting the fight.

Wednesday, April 4, 2007 10:11 PM CDT

Clinic tomorrow.

Zelnorm

Nutritional Status

(and other concerns which will fall under nutritional status)

She has a very distended abdomen right now. She said she feels like she is going to pop. I can't believe she is as controled about it.

Feel like our lives are all in a major limbo mode.

Dave took the day off so I could take Papa to his colonoscopy today. So Daddy took Olivia to pick out new glasses. She wanted a pair like Mama's--the plastic kind. Breaks my heart--how I love my little girl--how great it was to have time with my Dad and David. . .

This week is disjointed with us all being in different directions--clinic for O and me, David down to Mrs. Robin's, Friday both will be with different folks while I finish my commitment teaching art.

Looking forward to Saturday and Sunday and being with my family.

Mercy.

Monday, April 2, 2007 8:20 PM CDT

Keep praying that Zelnorm will be an option down the road.

Also, took both David and Olivia to the opthamologist today. Olivia has considerable change in her eyes--David can still squeak by with no glasses. I gave the tech my glasses and she was IMPRESSED with how blind I am--:)

Well, too bad Olivia got her eye sight from me. It was a bit concerning but he reassured me that she has grown and that happens.

So hopefully Wednesday Daddy will take her to pick out her new glasses--she needs them ASAP--pretty hard to study astronomy when you can't see the sky!

Overall, it was a laid back day, short school and fun at scouts. It will be so nice to be able to be a parent next year and have time to be more with the people...

Got to see some of my favorite art students too at the campus tonight. Neat stuff.

Sunday, April 1, 2007 8:49 AM CDT

Friday after art class I learned that Allison had passed away to Jesus. She was a young adult who would send Olivia gifts, stickers, cards...she was such a great encourager to many children of the caringbridge community.

My thoughts have been turned to her family and as her sister continues to prepare for her upcoming wedding.

Then also the same day on TPNsupport group there was the notice concerning FDA pulling Zelnorm off the shelf--all the shelves.

We've always felt that Zelnorm was God's little miracle pill for Olivia. We are praying for another one--and fast. Many children will be affected in a not so positive way concerning this. We'll discuss this further at clinic; I am sure of that.

Friday night was highlighted by a much needed long talk with my Hope. Please remember her and her family in prayer. Natalie will have been gone 1 year May 6.

Yesterday was a surprise. Aunt Becca came up with her 5 year old Miracle girl, niece. Her name is Miracle and I add girl. Her smile in infectious along with her voice and questions. Miss Donna came over too and we all took a quick trip to a wonderful nursery to do the best shopping in the world--plants! I pushed Miraclegirl and Olivia--Olivia was TALKING TO HER! Telling her of how she used to eat lady bugs when she was younger! I believe they had fun together.

I'm so concerned for Olivia on many different levels (Hope)--it seems the pain above her ostomy has subsided, her output will be something we'll watch very closely now, without Zel, she looks pale, and am anxious to get her to clinic to see what is going to change with her eating so very little--TPN only covers her up to 75% of her calories.

But mostly, I want Olivia to feel comfortable in her own skin, to want to be around others. . .she has so many who reach out to her and sometimes she'll not respond, please if you are one--do not be dismayed. She loves you dearly; she is trying to relocate her voice--it seems.

Thursday, March 29, 2007 9:13 PM CDT

So I did ask. I asked specifically. No fevers today!

She sat at the table with David (he had my LOVE breakfast to him--PANCAKES) and had a nibble off of ham with mustard.

They each did some school. I know for Olivia it is a matter of normal life starting to take place. I was not trying for any kind of hoop jumping, but allow her opportunity to write some words.

The aire here IS different. I'm pretty closed off with anything pertaining past my drive way right now. That does not mean I'm not doing the stuff that comes my way, but it means I'm not locking myself into a schedule which does not allow time to--be someone's help in real time need.

Someone's need today was and will be my children. David was picked up and dropped home again by a friend's mom. We had a visit from Miss Robin, Rachel and Samuel. Very good. Rachel said Olivia even talked to her--a LOT! Thank you so much. I could go on and on about this family!

But when David got home Olivia was done although she did very little physical today, but she crawled up into my lap as I sat in the only chair we have right now--there _SHE_ rubbed my arm--put _ME_ to sleep and I woke up to her asleep in my arms with her little hand snuggled down into my long sleeve. IT has been way too long that I've held my baby girl like this. It was pure Mama delight. David was secure in knowing he could do whatever while I was pressed into the chair.

TOO funny. He may think he knows what I'm thinking, but I know what HE is thinking!

SO O rode over to clay studio with me. We observed all of spring and arrived to a locked studio! But I found a window and crawled in and captured my finished (glazed and done) pieces, grabbed my clay and pushed earthen ware out to the kiln. I'd not been in a long time--month? It was nice to move things around and see pieces I had totally forgotten about.

Hoping Olivia can ride back over Saturday so we can drop of tiny stuff she's done.

Her speed is slow. She knows it and it has totally changed my mind set, my limit and overall tone right now. She is being ever patient with me and I with her. This morning's alarm was a POUCH leak all over the big bed--she immediately apologized. . .something really special is happening. She is recognizing, acknowledging, growing...Thank you for praying for her.

On a side note, tonight I got an email from the AWANA director. As many know, Olivia opted out of this Wednesday night program at church a while back. And because I used to be a "leader" I still get the emails. Can I just say, I wish I had deleted. It was a listing of the end of year "awards"--Sigh. Olivia of course is a "participant"--Double sigh--just found that a little heart piercing--but I asked her if she wanted to go a while back and she said--no. She is not a quiter, not a slacker, oh let it go, Sheila.

We tried to figure out the telescope that Papa loaned us--Dave and David took that over--that will be an interesting chapter for sure.

Peace be with you--His peace.

Wednesday, March 28, 2007 10:45 PM CDT

It is exciting to see how much better Olivia looks. This FLU thing is wild. I know many understand this first hand; thank you for your own personal information. It has helped me to be more understanding, patient and calm!

This morning Olivia asked about David and truly he is such a great friend to his sister. Papa is such a great help to us. Those two had such great times together. David spilled many of the glimpses from the past week. But Olivia's question this morning as to whether David is coming home or not, really spoke her novel volumes.

After David and Olivia played a bit in the big bed, David talked me into baseball (with a tennis ball) out front. We were trying to teach Charlie to field. We had the window open so Olivia could see out and hear. David's smiles, laughter, red cheeks was worth it all.

A friend who has an amazing testamony for what God is doing in her life and her family's life brought dinner tonight. I SHOULD be taking HER dinner, but nonetheless it was so great to see her and her Jacob--and to talk out things. Her older son lives with RSD. She found out about me through our homeschooling group when Robin (dear piano teacher--friend, mentor--sister!) sent a prayer request regarding a hospitalization last year. Anyway, it was nice to see her, we email, but never get to see each other--and we live 6 miles away! It afforded me the energy to play with David--it really made such a difference.

Olivia came to the table tonight; I think when someone brings dinner--it is such a curiousity to her. She nibbled on strawberry dipped in MUSTARD, nibbled on a piece of bread and asked Daddy to make his world famous tasting scrambled eggs--which he did--and she took a few tiny bites. ! This is milestone night!

I'm looking forward to a few projects for my children, but I don't see them coming to fruition until after the Oley conference end of June--

BUT I want to make a 3 page informational report about Olivia.
1) Medical Information, meds, sizes of catheter, tubes, supplies, etc. etc. etc.
2) Who IS Olivia (this will be fun, and also something I want to do with Olivia)
3) What IS Pseudo Obstruction

She had a nurse say to her "Don't you want to eat? No wonder you are so skinny"--that is pure 100% ignorance.

I also in the medical section what to lay it all out--what is DEKOLD POLICY in terms of Olivia's central line care and TPN or fluid hook-up.

I know many out there are saying; you've not done this already? And no. I've never felt that it was needed, but I do now.

So, only 2 spikes of fever today!

Praying for NONE tomorrow.

Tuesday, March 27, 2007 10:44 PM CDT

Olivia had such a good day! She spiked around 10 AM, Motrin and she felt better within the hour. I noticed she was sitting up (without prompting) and moving all around in the bed, so I threw a dress at her and we headed outside! She walked around the house with me looking for spring.

We put Cadbury in his bunny run to nibble on grass and let the hens out to scratch and grub around.

I ended up on the hill cutting down unwanted plants and Olivia stood/sat guard over the hens.

We came in and that was it for her; I was done too.

It was so great to see her walking. I know she is still wary of how she feels.

So just taking it slowly and resting a lot still.

David will come home tomorrow.

It is so good to have Dave home and seeing him able to accomplish things that HAD to be done around here. We fought the sliding door tonight--and we could just not do it alone, thankfully our new neighbor's workers were still around and they helped! Talk about ANGELS!

God's hands--I heard them earlier singing JESUS LOVES ME--I know they saw O out back...sweet.

Tuesday, March 27, 2007 9:54 AM CDT

Last night was very interesting, for us, staying home with a high fever is a bit unnerving, but knowing it is the flu helped a bit.

Olivia started with low grade and then SPIKED--I called GI immediately but we all agreed keeping her home and dealing would be best.

Her TPN will be finished soon so I can switch her over to replacement fluids and keep on track with that. She began dumping again which seems normal with this kind of fever.

Talk about SPRING FEVER!

Monday, March 26, 2007 12:49 AM CDT

So thankful to have a Heavenly Father who will take the guessing out of things.

Thank you all for your encouragement; we are so blessed with such a team of warriors!

Last night Olivia had pain off and on--she would cough (her Flu is resp) then vomit because of the coughing--GREEN Sludgey Bile.

This morning she looked worn out, sick, no fever and low output. The Docs were OK with her going home IF I was, she is very distended and miserable for the most part, but again, it will take rest and time to heal.
We have a tenative clinic for this Wednesday, but if she is doing and feeling well we'll go for the following week, or talk to Gerry to get another clinci set. Right now, I want NO stress for her--relaxation and peace--no medical sounds, but only that of the gentle spring day!

I asked her if she was ready for the ride and indeed she was. Although she said very little on the ride home, as we turned onto our hill CC's SET ME FREE came on and she cried it out. Yes, SET ME FREE!

So, we noticed how the Red Buds, Forsythia, and all the bulbs are blooming, how quickly that happens--

We cleaned her up a bit, took out J tube to relieve the pressure, hooked up fluids and propped her in the big bed by the bird bath and Izza at her feet entertaining Olivia with her kitten antics. And has talked more within the time we've been home than she did the last 5 days! ! ! ! ! ! ! !

Dave has the week off save Thursday so we can TRY to get over this and accomplish something--I'll take O and nurse her back to health--David will stay at Papa's for another day to ensure he has his fun filled day.

Thank you for all your care and concern. My heart breaks for those who are still "in"--Miss Maya, we are praying for you and your J tube placement! Praying for the children we saw at the hospital--for the parents whose faces scarred with pain, concern and the weariness of it--may they too see that Sparrow and know that He is watching and ever full of care.

Sunday, March 25, 2007 10:59 AM CDT

With her output slowing down, I talked the Doc into giving her a window to be unhooked so we could take a little ride. We went to the cafe--(It is so dead here on the weekends)--and there was saw a teen boy with a PICC line and we sensed a button under his shirt. I then took her to her birthday bench outside where we celebrated her 2nd year with bubbles. We fed a little sparrow there which was a highlight.

Back in she was exhausted. We were gone maybe 40 min tops. She dozed off and on for the rest of the early early evening--topping it off with some scary tummy pains. Venting helped and now she sleeps.

Just not sure about tomorrow. No more fever, but she just is so not well. BUT if fluids are managable, no fever, I say home--with Izza at her side.

Earlier today:

All right--we could use some good news around here! Her chest XRay looked good in regards to her lungs, but then again, everyone was impressed with her LOOP of bowel--:) Aren't we all? So, now she is to practice sitting UP, blowing out birthday candles...

The GI Fellow is delightful. He is German, straight from Berlin; I love the German accent. I preluded our conversation that my son loves WWII, which got a booming laugh--then talk turned to Yellowstone, Yosemite--it was nice to talk about something other than G bags, output and TPN.

There were tears today regarding missing Izza, along with the quivering chin--which gets me every time.

Saturday, March 24, 2007 8:31 AM CDT

This evening~~
Resident came and broke the news--Influenza B. I knew it! Not sure what that means--she has NO GI function at all (which can be semi normal for our O), but still temping and not feeling her greatest.

As always--
Sh

~Motrin has helped and has her CROCHETING!~

She was 38c through the night although the Tylenol did bring it down.

But alas at 8 AM it was well over 39c. We are awaiting the panel for Flu, blood cultures are due around noon, and new labs were drawn this AM as well. The plan right now is to DC the ABX when either the tests come back as positive towards the flu and 24 hr after blood cultures are negative.

The night was uneventful except for the every 90 minutes emptying a full pouch. She is dumping fiercely.

Her hydration looks great.

Yesterday we watched the first part of the OLD Dr Doolittle. She giggled outloud and I was so surprised as to how much she loved the Push me Pull me--I don't think I'd ever seen this movie? We'll watch the beginning again to see all the animals; we watched Beethoven's 4th which of course had dogs and we both enjoyed the movie for the most part.

She has little energy to do much of anything but TV and play with her Pollys--or watch me play with them.

Dave is not well and will stay home this weekend; thankfully David is with Papa and all is well there.

Thank you for praying with us concerning Olivia's stay here.

Friday, March 23, 2007 9:08 AM CDT

Still running fevers, but after Tylenol she seems a little perky.

Did a nose swab for flu, and stool for Roto, etc.

So, we'll hang tight, nap and watch TV.

Last night was rough in terms of sleep for both of us--so naps are def in order.

Dave was going to come tonight, but is starting to sink into the sick club, so we opted OUT of that party.

If you try to call--and can't get us--that means we are sleeping/phone off the hook. FYI!

She's quiet and sick, how is that for a description?

Friday, March 23, 2007 2:14 AM CDT

I guess it was February when we were last here.

So, Dave got Olivia up here and started the process. She was 104+ on arrival which is not her usual type of temp.

When I arrived she was sleeping. She started to perk up around 8 PM, but again spiked around 1 AM.

She is on Gent so they are drawing before and after this dose to check her levels. Olivia has been sleeping, talking out in her sleep which made sense with her fever.

So just awaiting to see what the cultures will present, she is sicker than I've seen her in a long time, belly still very distended, dumping (not surprised), and a bad cough. She is quiet, when awake, we got to i VIDEO with UNCLE GREGGIE! It was so cute as the nurses would walk in and I would answer his question! For all of you with your family tightly around you--be blessed--when I think about HOW far my Mom and Brother are--whew--but again so THANKFUL for technology. This machine was a high spot for O tonight! (ME TOO!)

On a bright note, one of the nurses who came in is a transport nurse--I shared with her how much we so admire that group (I just love excellence!) and how they helped us so much almost 5 YEARS AGO! Olivia's anniversary of being diagnosed and gaining all her tubes, etc. is one month away. . .

David and Papa are plugging along. I am SO thankful that David can be with my Dad and Dad with David. Dad was talking about taking a drive with him today--they'll look for trains and all the other neat details of the world around us.

AND--having the mac here enabled Olivia to see her Izza pictures! I told her about Maya and how she misses her kitty when she is "in" too--and how they put a picture of the kitty at the foot of the bed so she can still sleep with her...(OK, every time I say this, I cry) Olivia indeed would like that and brightens and straightens a bit when I remind her she is NOT the only one--

From Jars of Clay Remdemption Songs CD:

GOD WILL LIFT UP YOUR HEAD

Give to the wind your fear
Hope and be undismayed
God hears your sighs and counts your tears
God will lift up
God will lift up
Lift up your head

God will lift up your head
God will lift up your head
God will lift up your head
He will lift up, lift up your head

Leave to His sovereign way
To choose and to command
Then shall we wandering on His way
Know how wise and how strong
How wise and how strong

Through waves and clouds and storms,
He gently clears the way
Wait because in His time, so shall this night
Soon end in joy,
Soon end in joy
Soon end in joy,
Soon end in joy.

Wow!

Yes!

Thursday, March 22, 2007 6:17 AM CDT

Marching on--
March is never a great month for us; it IS the beginning of Spring, but it is when David's allergies and asthma play havoc, it has a flavor of waiting to know about Olivia and usually Olivia makes it in for a hospital stay each and every March since 2002. This year she opted for two tries at a March stay.

Last night, I was so weary, teary and blown away with how not good she felt because of Pseudo Obstruction, distention, congestion--she is such a trooper in her quiet way--it is almost deafening.

She has been sleeping in the big bed with me to I can touch her through the night and she me; several times we awoke to touch and she would say, "I love you, Mama"--and my love back to her.

When she awoke announcing full as a tick pouch I jumped up and when I felt her she was on fire. 102+ under the arm, but I know it was higher.

Dave was off today; I asked him to take her to clinic today with having been sick, David sick and O (in a way she has felt the best of us all--until now)--I so needed to rest, do some errands, and get things back in working order here. Now, when I say that I'm not talking about making House Beautiful at ALL--I'm talking about making sure we have clothes, the dishes are done and at this point the garbage is taken out. Right now, with all of supply boxes, and other big items, our back looks like a dump.

Olivia and I were going to have a mama and daughter day tomorrow, but I guess we will, but only under restrictions.

David is with my Dad; I took him up there last night. Olivia could not get out of the van. She was obstructing so, but loved seeing Papa, Midnight and Sweetie who jumped into the van.

God is showing me more and more how important it is for me to take away the distractions and concentrate on the calling He has for me.

Right here--in my very own home.

Thank you for your love and prayers.

Tuesday, March 20, 2007 5:56 PM CDT

Happy SPRING--
Lucee's birthday and Grandma and Grandpa's Anniversary!

We are the sick ward here--all of us--except for Dave and I know he didn't get any sleep last night.

Will be NICE to get over this hump--

!

Monday, March 19, 2007 6:00 AM CDT

David is still coughing and Olivia decided to follow in line, actually, I'm right in there too, but still at the stuffy runny nose end. It is so strange this normal kid sick stuff. I never was very good at it and still am not. I think Olivia will bounce back faster because of fluids. David resists any kind of flavored substance which WILL help him to feel better even if just temporary. That leaves little patience on my end for sure.

As you can see there is Izza--THE Isabella of Olivia. This kitty has been such a BLESSING to us all, mainly Olivia who has her so mellowed and trained. She LOVES Olivia's way of petting her. She is very sweet but as any kitten turning into cat learns--they can jump higher and get to places they never could as baby cats. Well, Izza is IN that stage for sure.

Charlie LOVES her--we just say, "Where's your Kitty" and Charlie goes running for Izza. Charlie and I are going to start walking; he has feasted at the cat food bowl and has added a bit of a layer (who hasn't?) so, he and I have a date each day--wanted to do it in the AM, but with not feeling well, will wait for it to warm up outside. (yeah right)

Dave and I visited that scary sad stage of this life last night. It is so vital we make the trip to the Oley conference this year. I don't like placing any kind of expecations onto any one event or person(s) as right now (we) feel so fragile. God will, God is...

Ah, yes, it must be clinic week. That it is.

Friday, March 16, 2007 4:23 PM CDT

Tonight is David's square dancing graduation. He is not feeling well, congestion, we call it the Ohio Valley Gunk. If it weren't for graduation we'd all stay home, but we'll go for a bit--he will be fine.

O will wear fluids; she is congested now.

Yeah, David boy square dances. We like to think outside the box. :)

Please keep our Colynincalifornia in your prayers, and Miss January will have a NEW central line next Friday! And it looks like Kody decided to go visit the nurses on 5th floor.

Daddy survived his Friday and I'm awaiting this weekend's business to be over with so we can move onto getting finished with a few loose outside the house stuff.

It is more and more a reality. My role is to my family and home; it has been such a blessing this week. Things had to change; I'm so grateful to God and His direction--and His allowance He pours over me.

Wednesday, March 14, 2007 10:55 AM CDT

David boy is feeling MUCHO better; it is more his allergies/asthma season more than anything. He was silent on Monday but yesterday he practiced violin and did some work.

Today he is even better.

So much better while his sister was preparing to empty her FULL empty pouch--she turned to him and said, something that a little sister would say and accidently emptied her FULL (did I say FULL) pouch onto the CLEAN bathroom floor--but both without whining and fighting CLEANED IT UP--I of course took Charlie for a walk and came back in to the final steps.

THAT is a HUGE accomplishment for BOTH.

Now, onto school....

Monday, March 12, 2007 9:45 PM CDT

David BOY is sick. I truly thought it was the Monday morning flu, but turns out he got his mid March flu that he seems to manage each year. Congested, fever, quiet and moaning would discribe it best. There is something to be said about the typical kid getting sick in a household of chronic medical/health issues.

It was a strange day with our being home anyway due to the COUNTER TOP TO THE ISLAND being installed--which is absolutely beeeeuuuuteeeeeeful.

On my way up the steps my hand slipped and the world's biggest splinter injected under my right middle fingernail. It totally slowed my day down after that.

Dave took Olivia's stuff/care over tonight while I laid low. She is such a little Mama. She brought up her own basket of dresses from the basement.

AND--this is major news--she is REALLY crocheting now. She keeps telling me (repeating herself? WHERE does she GET THAT?) that Grandma showed her the next stitch, but Grandma didn't think it was right, but she checked her crocheting book and it was right--and she did 4 rows--granted it is a circle because it is so tight--but STILL--I just wish I were more--crafty--as I think Olivia really enjoys it as a form of her distraction.

She took good care of Izza and Charlie today, and David boy.

Thank you, Lord , for little sisters.

Saturday, March 10, 2007 7:33 AM CST

Please pray for ZACH at this moment he is in need of the Great Physcian's touch, His Creator.

We lift Zach to our Lord Jesus.

www.caringbridge.org/wi/zachsam

~_~_~_~_~_~_~_~_~

Thursday night's stay home was best. It enabled for Friday's art day to go more smoothly. Thankfully, one of the moms took David and Olivia with hers to get a bite to eat. It is just a long day, one I'll not repeat next year, again learning my boundaries, what I can and can't do anymore. I DO enjoy it, I love teaching art seeing what the children are making--being able to show them the Jesus I know--and touching each one specially.

David's art work is at a point which he is ready to go much deeper in his study of drawing. This is very exciting as I, as a child, was never like this, I know my brother was, but I was a late bloomer and had to be taught a lot--it didn't come as natural as it does for many. His self portrait has an eagle and an American flag along with his name. He is to draw a portrait of the people we meet in history and science too--it has been a fun way to see progression in drawing as well.

Olivia is running on a mid to large distention though. I slept with her last night and when I reached over her tummy was taunt and gibbous. How does she stand it? NEITHER bag was on her tubes, so I put them on and a rush of air came out from her Gtube, ah---how I have grown to LOVE that sound!

She ran out of energy long before she admitted last night; they had KJ and L over after art to play outside--Charlie too! Finding lizards, playing in the sandbox, digging holes, Olivia was quiet, but held her own, but did come in and get in the big bed--and was done.

Today is Pinewood Derby District race which is held at our church's gym which is nice as we'll not have to travel far. We'll pop over for a bit then come home.

Praying for Darla and Spencer, Zach, Colyn, Malisa (GO HOME!), Allison, Alex, Kody, and many other friends...with love.

Friday, March 9, 2007 7:02 AM CST

Olivia seems to have leveled out a bit with output. We are no longer chasing our tail trying to catch that perfect hydration.

Olivia has looked into her crochet book and working on the next stitch. Her crochet work is a voice for her. Example. Wednesday David had a friend over, it was one of those days where winter has rested and spring has spoken. Olivia and I were taking Charlie for a walk around our 'horseshoe' when he spotted our neighbor's two dogs. We struck up a conversation, I've never really spoken with this woman and her 5 year old grand daughter who lives with her. It was so pleasant and that night, although Olivia spoke only to the wind, and not to a person, she busily mixed her fingers around the yarn and needle--for the little girl across the way. It is her line to communicating, this twisted, knotted line of yarn.

A friend got a mac--a FRIEND in CALIFORNIA--although Olivia would not speak to Colyn, tonight she kept asking me to check to see if he was online. I used Colyn as an example about the possibility of her needing to use a rolling backpack for full TPN, she rested in that thought and without a sneer. What a blessing this will be for Olivia--so see a support friend. TEARS!

We had two full days with our cottage school--David accidently called it college, I think he is right! I've never done this deep of a unit study before, it is so incredible to see how the American history (Christopher Columbus) and Astronomy are connected not to mention all the "language arts", math that is being introduced or reviewed. I introduced the circle, what diameter is, etc. And at this point little Livi was there with us (Not my Olivia) and being her almost 4 years old--when asking her a question says, "DIAMETER"! HOW great.

Learning.

I was unable to get to clay studio last night.

I had to be here. I have to let it go. Still going, but let it go when I just can't.

It has been very good for me to fall away a bit from doing it all within the week. I can't believe the marathon I was running and how close (we) I was to spraining a muscle. . .

So thankful for His leading.

Please pray for Miss Ginny's George, Miss Robin, Zach, Alex, Noble family, Eacrett family, Coleman family, MISS Hannah. . .and for Daddy's back--,

Monday, March 5, 2007 5:17 AM CST

The weekend was memory making greatness.

Seeing Hilary Hahn in person, hearing her was an amazing experience. But I have to say the whole night was memorable. We bought front row tickets (cheap seats!) and could feel the cello when they were in full force, at intermission one cellist remarked to the children and welcomed them. It was very pleasing.

Olivia drew through the first half of the "show" a drawing for Hilary Hahn, one of a girl and her violin and notes all around. It was true blue Olivia.

After the concert a very long line awaited to get HH's autograph, and my two and I were ready for dinner, so O ran up to her and dropped the drawing and ran away, Hilary's smile was great, too bad Olivia didn't see it. Next time!

Thankfully, her output slowed a bit, I unhooked her as the orchestra began to fill the stage with their scales. She continues to "dump" and require replacement fluids. We are praying it slows back into her normal and soon.

We had a fun adventure afterwards finding a place to eat. David was all concerned being in a city, THE LARGEST in INDIANA--he is such a treat. (For the most part!)

Sunday Papa, Miss Donna and Jordie stopped by which was a BLESSING! The kids played while we just HUNG OUT--Olivia made us all green tea; she looked so radiant, happy and spoke in her British accent.

We'll start the week slower than usual with no piano and violin today. We are being cautious.

Saturday, March 3, 2007 11:55 PM CST

Miss Hahn is an amazing artist.

Olivia's dumping slowed a bit, but it has started up again. It'll be an interesting night for sure.

More on the concert; I've caught the classical bug again. Thank you, Brother!

Saturday, March 3, 2007 10:08 AM CST

Olivia is a dumping girl.

3 Liters out in less than 2 hours.

Her "tummy" hurt a lot yesterday and was extremely distended throughout the day.

No skate night, but she and I had a good time playing math games online.

Today we head to Indy for a violin concert--Hillary Hahn. Greg, of course, clued us in on this gem.

Please pray O's output will slow down and we can go.

Tuesday, February 27, 2007 6:22 AM CST

Olivia seems to be recovering although her baseline is a bit different, requiring extra fluids being one. Even after an additional L yesterday she still seemed a bit low, she is dumping again. High volumes, today I'll keep track to know exactly what is happening. We are praying Olivia's output will slow down and her body will settle.

Last night after PACK MEETING I found Olivia in her room looking at her picture book that my Mom made for her. It is her April 22, 2002 story. There you see her in the PICU, later in PT relearning to stand, all of it. Little round baby faces from David photos of daddy, grandmas, grandpa and me--we all look so much younger!

She asked me, if I was scared during that time.

When I saw her in recovery with blanket upon blanket mounted upon her and all the tubes coming out in various places, I told her I felt as if someone had kicked me mutiple times in my stomach and I could not breath, but this is not something you can let on to anyone. So when told we needed to get our "things" to change rooms, I quickly offered to help leaving Daddy there.

So there you have it, Olivia.

But David interjected, I want to hear when I was born, as if April 22 was when Olivia was born! It seems at times it is, but not really, as her birth was as different as night is to day from David's.

As I told David, his was nothing but pain, pain and more pain--and crying from a wailing baby boy--only to be silenced by his Daddy's voice saying, "Hi, Baby"-- Isn't it remarkable?

We are praying for Logan's family, Noble Family, Eacrett Family, Coleman Family. Please continue praying for Zach and his family.

May we see Jesus Lifted.

Friday, February 23, 2007 7:18 AM CST

Dr. Kaul had us out in record time.

I heard the nurse come in to give O her pre medications prior to receiving Vanc and I asked him to stop as we were going to be discharged--he debated with me a bit--felt like that the whole hospital experience had such a questioning flavor to it, as if Olivia had never been in before--it was frustrating--I know I need to step up the advocacy end of things.

So he paged Dr. Kaul who was coming to round and within 20 minutes we were on our way out! The nurse did return saying he needed to eat his words.

It was probably a UTI, but she was medicated after having a urine culture sent.

She looked pretty sick. With a fever for any kid with a central line it is to be addressed and attacked with fervency and when questioned WHY were there with a 102 under the arm--I was dismayed and my thoughts went to our friend Kyle.

We came home and rested--another day gone, but we did snuggle snuggle and snuggle some more. Olivia took a heavy duty crashed out nap, her little body still healing and still working to catch up.

She is experiencing a lot of drainage out her G tube which is bright green green bile and pressure out her J tube, urine looks good and still high output in general so we'll need to keep the fluids flowing all day.

Hoping she is up for "hair" on Saturday as she had agreed to go with me to get my hair done and let Miss Anita do hers--with finger polish rather than a sucker that the Great Clips would give her. That is WHY she wants Great Clips for a sucker--? OH MY, what has this world come to?

David and Dave have Pinewood Derby tonight (Fun Race) and tomorrow (Pack Race)--a bit bittersweet as they've not had time to even make the car completely, but oh well.

Time to unpack, regroup--no piano or violin on Monday--SEE--I AM trying to keep it simple--and thankful that there are those around me who are supporting and holding me accountable.

To Jesus!

Wednesday, February 21, 2007 8:56 AM CST

How long will I wait oh God
If it takes all night Ill wait all night my Lord
Were watchmen on the wall night and day
waiting on the promises waiting by faith oh Lord
And you promised that the lame would walk
you promised that the blind would see
Your not a man that you should lie
its the presence of your promise
and the promise of your presence
its the presence of your faithfulness
and the faithfulness of your presence
its the presence of your goodness to me
and the goodness of your presence
its the presence of your promise
and the promise of your presence
and it brings me joy really brings me joy---

Kevin Prosch

This morning at 6 AM I hear,

.....come, now is the time to worship.....

I have yet to figure out the IHOME contraption Dave gave me and it slept while we slept and awaking to such a moment in time with that really was beautiful.

Olivia and I indeed did snuggle last night. WE had another awesome nurse who took good care of us both (taking care of me is emptying O's outs for me).

We watched Little Women which was such a delight and for the first time ALL day Olivia spoke in a normal tone about the kitties in the movie--she lit up. She held her stuffed Izza.

She has whispered all morning long but did smile a bit with me prior to rounds.

SO thankful for our GI nurses who UNDERSTAND and have such a clear knowledge to these "TYPES" of kids--and Dr. Kaul--always a pleasure to see him, although I have to admit to hear his accent really takes me back almost 5 YEARS ago--5 YEARS! He is such a dear man, affirming Olivia not commenting, judging her quietness--remarking on what a darling David is, what a great doctor.

David is with Papa, Dave is back to work--Izza and Sugarbelle are probably sleeping and Charlie happy as is David to be with Papa--

The weather here is nothing but FOGGY.

Weather report and animal report over--I must be Virgil Clausen's daughter.

Going to print out some sheets on the solar system for Olivia. Went to the play room to grab my coat I heard Olivia talking about Izza, saying she was nocturnal. I love it.

Thank you for all the sweet messages of love and praying for us--

Really brings me Joy.

Tuesday, February 20, 2007 4:51 PM CST

Wow, it is raining here. Olivia and I had a good 3 hour nap; we awoke glued together and her still complaining about her arm. Her nurse got the go ahead to take the IV out. It really bothers me that they placed one in ED to begin with--which may seem like a little thing, but for someone like Olivia who packs a punch of hardware under her shirt, it is a big thing. It was on the inside of her elbow which then made it impossible for her to do her simple things--and all who have seen Olivia in action--she loves to crochet, color, draw, and do math? Maybe tomorrow.

Her temp is down a bit, but abx have been started, as well as Tylenol. She's quiet, but also very glad to have her stuffed Izza--they had a stuffed kitty at the gift shop which looks JUST like Izza! Made her smile.

Dave is driving David to Papa--Papa has had a couple of rough days, so am praying that David will be a blessing to Papa and visa versa. I don't like the spread out family thing, but I have to say, I'm enjoying the major cuddling up time with Olivia--I can't believe she'll be 7 in exactly two months--how beautiful she is.

One of the docs asked if she ever walked around like a NORMAL kid--I tell you what--I had to laugh, because Olivia never walked, always ran and even now when we stop and look at all she had gone through and holds under her shirt she still can run with the best on a good day.

Presence of Your Promise
and the Promise of Your Presence

The Promise of Your Faithfulness
and the Faithfulness of Your Promise...

Kevin Prosch

Miss Donna could you put the words in the guest book? You know which song--it really spoke to me and reminded me...that He is RIGHT HERE!

His LOVE endures forever.

Please keep Skye and baby Fi Fi and Livi M--in your prayers--and all the Grandparents out there who have grands sick; I know it is hard on them in a way I do not understand.

Thank you!
Pressing ON!

Tuesday, February 20, 2007 9:18 AM CST

I could not sleep last night and so around 1:30 am when I touched Olivia she was hot.

So here we are in CCHMC; after 5 hours in the ER and many other encounters which I'll not address here and now.

Olivia continues to be around 103, quiet but VERY glad to be in HER ROOM. Those caring for her now seem to be like sunshine.

Nothing alarming at this point, but I can't help to think of all our dear friends who have dealt with nothing alarming only for it to turn into a crisis.

Olivia's concern was that Keesha knew we could not have Cottage School today and her Izza.

Would appreciate sanity prayers for me as I've had no sleep at all and all those who FULLY know me--that is NOT good--ever!

Jesus, You ARE all that we need!

Friday, February 16, 2007 8:15 AM CST

NEW PHOTO of David and Charlie on PHOTO PAGE!

As I type Charlie is lying on his back with his legs UP in the air and he has a slight SNORE. This dog has been SUCH a gift from GOD. I'll take him out to run, and do his "thing" and never have I felt resentful. He gives so much to our family just as Izza and Sugarbelle and even Snoopy the hamster and the two hens and well, then there is Cadbury BUNNY. Pet report over.

We had an amazing day yesterday.

Another gift straight from GOD and I decided to finally give the cottage school thing a try. We'll meet once a week to start out and go from there. We are pooling our resources and building a study of American history and science. We'll add other subjects in after we have these up and running.

The huge blessing is to see each child rise. Each had a certain amount of growth which could be visibly seen.

Olivia has been VERY gassy. And if you are gassy with an ileostomy (or any ostomy for that matter) you have NO control over any part of that. But with this family no one bats and eye--precious--and by the end of our time there Olivia was no longer wincing each time. It is SUCH A RELIEF to have people in our lives who see her as a little girl--not a victim or a sick child.

So off to the Planetarium today; we talked a lot about what that means and hoping this will be a very meaningful field trip for all.

`~_~_~_~_~_~_~_~_~_~_~_~_~_~`

For our Miss Donna, The Noble Family, Colyn, ZACH, Hannah, Allison, Malisa, HOPE, Z and A, BEN, Anne, Cousin Mindy, and little FI FI.

Grandma Lodgie, Aunt Vangie, Papa Pete, The entire Coleman Family, Samuel Bell and his little sister Savannah Rose.

And Jennifer (guestbook, Jennifer)

We lift these precious souls to you, Lord Jesus.

~ ~ ~ ~ ~ ~ ~ ~ ~

This is a portion from Kevin Prosch (MY fav right now):

into my hands have come many things
you should be disappointed
for i have wasted most of these
my innocence and youth
i poured them out like water
and to think to you that i am God
still worth saving from the fire

Everyone has a story, don't we?

I know that my REDEEMER LIVES!

Thursday, February 15, 2007 8:29 AM CST

Dave came home with CHOCOLATE for me! IS HE TRYING TO KILL ME OR WHAT?

We had a sweet time last night with the kids, play SPY ALLEY (Thanks AUNT JANICE) and eating chocolate.

And as we were all on the big bed the phone rang; it was Blackiston Mill Animal Clinic. AND....everything came back NEGATIVE on IZZA! We are so thankful. I have to admit, I thought for sure she would have something, but Olivia said immediately, "I knew she would be all right"--so there you have the IZZA report.

My heart is very heavy these days for people I've loved all my life to those more recent and even those I've never met!

As one grows older complications of living comes into factor.

But today a young teen in WI will have a pacemaker surgery and ask you pray for him today as he can be a complicated guy with bleeding issues. He is a GREAT artist and I am praying that he'll not need a LOT of blood, and pain will not be an issue and he'll soon be doing what he loves to do...and for the Noble family for their loss of their SON KYLE, Hope for her loss of Natalie, but also for her own recovery from a cardiac cath back at the end of December.

Grandma Lodgie got news a few days ago about Atrial Fibirlation (Ok, so the spelling is way off) and she'll have testing, etc. and NOT be able to come back for her Olivia birthday visit--so we are praying that medication can help for now. Jerry has been such a ROCK and I am so thankful for that.

Olivia is holding her own. She is eating less lately, maybe two bites of something and she is done. HOW she loves to EAT and TASTE and it hurts too quickly afterwards. She's been so gassy which is a whole new avenue when we are out and about.

I'm anxious to get her back to the clay studio--there folks are so raw.

Olivia is one raw little girl. She continues to push the boundaries of fashion, and is strong in her faith. All in all she is a strong little girl.

She loves her Izza SO much. She talks to her (like most people!) as if the kitten would respond, they have conversations. I think Izza was JUST what the DOCTOR (HEAVENLY FATHER) ordered.

And David SPYwonder. He and Charlie are inseparable.

Monday, February 12, 2007 7:23 AM CST

This week could bode well for the house if all the pieces fit. A new TPN fridge since the old basement fridge decided to quit, our island is finally going to be fitted for a counter top; the kids and I found a stove on sale last week, so...soon we'll have a full working kitchen again.

Then there is Izza. Olivia's cherished first kitten little best friend of her world. . .Izza. Izza slowly got worse all week and after art class we nabbed Izza at the house and raced to the VET. I was taken a bit off guard, did seem concerning the kittencat had gotten sick again so soon, but wasn't ready for the "talk"--

Seems Miss Izza needed to be tested for all the Kitty Viruses out there. Her being sick so soon could mean that she has one of these viruses. She had/has a secondary bacterial infection which we are treating with ABX and plus some other concoction for the virus.

Our VET consists of a husband and wife team; he had told her about Olivia. When Mrs. Vet to me that kitty could need meds for the rest of her life--tearing up--for at this point David, Olivia, Keta Jo and Lucee were in the waiting room to meet all the new arrivals--introducing themselves to each neat pet and owner--God really has a way to make you physically FEEL His arms wrapped around you.

Izza is so much like Olivia as any kitten probably would be, playful, curious, cuddling bundle of joy. Olivia and I thought Izza would be so cute with J and G tubes, as her tummy is hard at times--maybe she needs to vent? And now with the possibility of meds needed; it could be overwhelming but really it is a blessing. Life lesson for sure. We'll know this week what comes of the kitty blood tests.

Then Charlie, sweet blessing dog. He is a pal to all of us, mostly David.

Papa Virg our official weather man says snow is coming--can't get here soon enough.

David has a weather station set up outside the window--that and a window birdfeeder and we have it science central.

I finally got a long instant message session with Hope--who is STILL recovering from a cadiac cath in late January. Please keep her and her family in prayer.

Thursday, February 8, 2007 8:21 AM CST

YES! Yesterday was our anniversare (David's spelling--WHO IS his spelling teacher anyway?). The kids each brought Dave and I a little picture with a dollar bill to us as we had our evening debriefing of the day in the kitchen.

Dave met us for church; Olivia and I in the front row--she with her huge golden purse walked right on down the aisle. She cracks me UP!

We had a good time, but she kept asking if I wanted to watch David during game time, and asked her if she wanted to go to participate. Still no. Hard.

~_~_~_~****~_~_~_~****~_~_~_~****~_~_~_~

AND today is yet another very special day--one that has been special all my life.

It is my brother's 45 year. Gregory Scott has always been my best friend from the start of my life. Greg is one of the most generous, sensitive, intelligent and humble people. God has worked a mighty work in Greg. We want to lift Greg to Jesus today especially and pray he has a great day.

Love you--Brother.

XO

Wednesday, February 7, 2007 7:41 AM CST

February 7th!

As Dave says, the BEST day of his LIFE!

God gave me a great man in Dave DeKold. He spoils me in his own way and drives me nuts in his own way; it all balances itself.

Cadbury escaped ONCE again yesterday so the kids spent their time outside trying to recapture him. They ended up on the hill with plenty of adventure, but it wasn't until David was in bed last night that he saw that crazy white rabbit hopping about, so Dave and I grabbed our coats and shoes and lights to find him. With glowing eyes I found him in the side yard and he was happy to be herded back into the hen pen.

Olivia seems very pale, skinnier but thriving off feeling decent. She had a small obstructive day. She also had a season of what most ostomates experience a every couple months or so, which made her very uncomfortable. It is over with now and she is able to be her "normal" again.

But in this season she disclosed that she didn't like AWANA anymore; that it isn't enjoyable. There aren't any kiddos she connected with in her group. David is in the group as well, but always has kids about him. He said it isn't his favorite thing, but they both enjoy the handbooks. So in praying for ways to cut out things; AWANA may be one for next year. Olivia prefers to be with adults or older kids and the situation of large groups of rowdy kids doesn't appeal to her. It is how she is made. I have had to come to grips of this. I think it has a lot to do with her feeling safe and understood to a degree as well.

I'm realizing too that I do not have anything to prove. Two big strikes, (from the society's standpoint) homeschooling (which I didn't "DO" because of Olivia, but because God placed it ON my heart before David was even born!) and a medical darling make for an interesting recipe for a family. I found myself in my natural man trying to please, impress, express, that _I_ __CAN__ do this and make it.

I got caught up and into the idea that THE more is THE better and by doing THE more my children ARE NORMAL and are getting SOCIALIZATION. People freak out if their kid doesn't look like all the other kids--I had people tell me that Olivia was missing out on things by being with me in adult church, that it was as if _I_ was holding her back, but no, it was her saying she wanted to be with me; I'm not going to put her into a situation which she doesn't feel comfortable with--and on top of that--I push her when she needs to be pushed and being in a room with too many kids is not my idea of a place to push someone like my God given gift, Olivia.

I then become the over protective HOMEschooling MOM OR the Mom who over reactes because her daughter has some sort of medical issues--as all of you know, Olivia LOOKS very NORMAL (do not like the word normal).

I canNOT say enough how thankful I am for those dear friends God has given us as true gifts--who accept us, Olivia as a little girl who can be sick a lot, but don't put her into the victim category, who don't allow their children to play caregiver to her when not needed, to talk down to her, to treat her as less than--and they greater than--faster than--smarter than--

But that is found every where--we are HUMAN BEINGS! Imperfect in ALL our ways.
Life is full of seasons for sure.

She is very much our little girl, but there are times when I realize her normal is so different; she also concerns over her central line, tubes, ostomy all of it. It isn't just my being watchful nursemama.

I made reservations for the Oley Foundation conference in Cape Cod at the end of June. I believe that Olivia really needs to see her people, friends which she only really remembers as names. I'm excited about seeing everyone and this part of the country. MY biggest hope is to MEET my HOPE! As she will be very close.

Sunday, February 4, 2007 3:34 PM CST

It is so very cold here.

I am trying to keep Olivia in as much as possible.

David and Olivia are enjoying their homebound time; I've needed the rest as well as Dave.

We are excited about the Super Bowl.

A very nice lady from Davivd's sq dancing group's daddy is having yet another heart procedure and we are praying for Malisa, Allison, and Zach.

Precious people.

We call upon YOU OH LORD

Thursday, February 1, 2007 7:34 PM CST

PAPA went home tonight.

He'll have a follow up 2/9. I'm sure Greg and I will get our heads together and come up with some questions as well.

We DeKolds are calling this a week of HERMITVILLE. Have to. We got a bit of snow (nothing worth really mentioning, but the PS were closed!) and D and O did it up along with Charlie today. I had officially put off school until Monday anyway so it was nice to finally get some good sleep for all of us--putter and get things accomplished--no one is feeling 100%.

Just so thankful that the light at the end of the tunnel is really shining...

Shine on--

TO Jesus!

Thursday, February 1, 2007 7:34 PM CST

Wednesday, January 31, 2007 3:31 PM CST

Papa called me last night as he was driving himself to Madison's hospital (1 hour away from me) around 11 PM. Thankfully, after a VERY STRANGE couple of days, I did catch a cat nap during AMERICAN EXPERIENCE with David watching Berlin Air Lifts--so I was ready for the task.

My Dad's heart was racing and skipping around. He is THE kindest soul I know. It was a nice drive up and back with my Heavenly Father and on the way home I got those pin prick kind of spiritual heart feelings reminding me how much GOD does love us.

Dad had a great nurse. And I felt people smiling at us, being kind back. That to me is worth so much.

As I saw my dad with his IV, O2, and gadgets, I was amazed that had this happened years ago, it would have hurt so much more, but God has softened me, helped me, educated me, directed me...through the little girl he gave me, Olivia!

So, Olivia is determined to ride with me. When I told Dad he didn't say, oh no, I could tell he wanted his little g-daugther to come if she could. So she and I will hop up to Dad's and make sure all of Dr. Dolittle's friends are all fine--it is COLD.

Lots of hard reality items that really are liberating. But no time now for such thoughts.

Thinking of my Dear Aunt Vangie today--as I know she had testing as well--procedure for her precious heart.

To Jesus.

Sunday, January 28, 2007 10:04 AM CST

The MORNING that Grandma Lodgie left Olivia awoke with needing to have her stomach "syringed" in DeKold terminology. She wears a "G-bag and a J-bag" every night to allow for decompression of fluids, bile, food, stool which needs an easy way out, or just plain air.

She has no problem wearing her bags while in bed, but because she has been able to not HAVE TO wear them during the day sometimes (most always) the adjustment can be hard to have these pieces coming out from under her dress, shirt.

Friday she slowly wore down and by the end of the last art class she was lying on her tummy on the floor. I saw a glimpse of what it would be like for her if she was in a traditional school setting. A few other children helping me pick things up, their energy level was certainly different. I know this to be true, but after a great season (over all) it was slap, but mostly for Olivia.

She recovered a bit at home while I cleaned her up a bit and gave her a FLUID ball and a new pouch. We were off to spend the night with friends just 8 minutes away--David, O and me--and we did, but she was obstructing, no stool out and green green bile, which kept her hooked up on fluids, G and J bags, which was a bit of a struggle.

I'm SO grateful for my friend, who--does not put Olivia in any specific box, but sees her (and David as well!) with the eyes of Jesus. Olivia remarked earlier this week, that Mrs. Robin (piano teacher and dear friend of mine) and Keesha are a lot alike. They ARE alike, in that they Love the Lord God, and show His tender loving Hands....to her.

But today Olivia's body is starting to work, we are seeing stool in the pouch and she is excited about a homemade brunch of eggs and pancakes.

D, O and I remained home while Daddy headed off to church. We've been visiting CB sites of Devin, Maya, Malisa. . .Olivia is feeling a bit like an island.

Yesterday Olivia had a hard time wearing her bags in public--she so needed to--she claimed last night that it embarrassed her. As I RE-explained (patience!) the WHYS to decompressing--#1 NO VOMITING, etc., I heard the word...

Confidence.

Yes! And when I shared this later with DEAR friend--CONFIDENCE IN WHO SHE IS IN CHRIST JESUS!

YES!

So, God gave me the "message" for today's homechurch.

He is such an EVER Loving...Father.

~~~

Thursday, January 25, 2007 8:24 AM CST

Papa Pete had one of the best days in a LONG time yesterday of which we are SO thankful and know it was the tender mercies of GOD! Thank you, LORD!

Yesterday was our (well, my 3rd) day at the library, finishing up the display case with art work and seeing Stephanie again--I think we have made a new friend. Thank you LORD, again.

We had our 6 month dental appointment; David and O LOVED it! They want to go every day so they don't have to brush their teeth. As we walked in, Olivia was confessing her lackk of brushing. She thankfully, has my teeth, whereas David has his Daddy's, Grandma Lodgie's and has had oodles of filling work done last year, but alas--NEITHER had anything--clean bill!

I just have some rickety old silver filling which is cracked and should be replaced which accounts for the 'tooth achey' times.

Olivia had her med ball and loves it--silly girl--and loves the fluid balls that we got as well for on the go days. I think we'll save ordering those for the more hot days of summer.

Off to school--and rechartering our PACK today. PRAY that I can FIGURE IT OUT--it has been this looming assignment over me and time is running out--I have been having flashbacks to college days where English essays are due--ick!

As always, praying for our dear friends and family in need.

Monday, January 22, 2007 7:47 AM CST

Papa Pete is at home resting and eating...thank you for the prayers....

Dave's earthly Daddy is not doing well. Grandma Bert is taking him to the doctor, then hoping for a quick admit to the hospital.

Praying for peace and love to abound.

January 23, 2007

On Sunday I had a feeling Monday would be one of those days--not sure what kind and really during the day many pieces fit together even if it didn't seem as if. . .

David and I had a great start of the day dropping Charlie off to be neutered, there we met Carlos a beagel, and our neighbor Cheryl and her dog. Off then to breakfast, where David and I just enjoyed each others' company.

On returning I asked Mom if she wanted to go with me to piano lessons; she was hoping to stay home to preview "Luther" so we could watch with the kids. So, OFF we were to piano, I dropped Rachel off to orchestra while David and Olivia had piano and I could have an hour to run to art store and library.

Here is where the day got interesting. As I was writing my overdue book check, the lady who I have seen there for years, finally asked if she could asked a personal question. (To all who know me this day is a Sheila type deal) I am thinking, great, she is going to ask why I seem to have late fees, but alas, no, she asked me if my daughter was in kidney failure. So after giving her a short quip on Olivia's deal, I offered her the platter and there she told me of her best friend who died last year of kidney failure and her love for her friend. It was remarkable! All this time when I would try to get a smile from her, she was HURTING SO MUCH. So MANY HURTING PEOPLE.

Today, January 23, is her best friend, "little sister's" birthday. We spoke of healing in heaven, of a loving God who knows all, and how it will always hurt, bringing to mind Hope, Anne, Donna, Darla...so many who have lost, and here on January 22, I lost a dear friend...Sarah.

As another friend would say, GOD YOU ARE CRAZY!

But it gets better. As I was walking out I could not find my keys, which means, stopping and putting the big purse on the chair and emptying out all the books, etc. I went back in to retrace my steps only to walk out and noticing the empty display case in the hallway and out to the parking lot where my keys lay--in the LOCKED van.

So, thankfully MOM did NOT come with me and could come get me with the truck, and while waiting I went in and inquired about the empty display case (Oh no!) which I had signed up to fill for January and February--OOPS!

Having my OLD cell phone I was able to contact an art family with 3 children so I could fill the display case.....TOMORROW...on dear Stephanie's friend's birthday! When she had mentioned that her birthday was the 23rd, I felt that tug of--Sheila, come down here. . .and do something, give something.

So, GOD made a way for me TO come down without a doubt or struggle of flesh and having been praying about a way to use all the clay pieces I am making (nothing worthy, but full of love) I felt as if I am to give them away to people, yes, but especially make pieces for special people, mothers, maybe even siblings...oh thank you Jesus for this opportunity. I've been praying for ways to make visual arts a blessing to others.

So today, Olivia freshly unhooked from her TPN will accompany me out into the dank cold day. We'll hit the Sweetlands for their art, then breakfast, library, PC Lumber to pay for our island, Kroger to get the cherished Boars Head ham my daughter has aquired a very sophisticated taste.

Order our steps, dear Jesus. Help us to see the Promises and the Preciousness of all we met.

This month has zoomed by, not because we've been busy running, but having Grandma Lodgie here--taking each day, living it, learning within it and growing.

Mom leaves Friday early, again we will miss her, but know it is her time to return to Grandpa Jerry. When I introduce my mom and tell them she is here from California it can get a bit confusing--thinking that I am native of the Golden State, when in fact I'm a Buckeye through and through.

When my mom comes I don't have to concern over laundry, Dave has socks, the kids have all their clothes and we never open the small linen closet and find empty shelves. I never have to load or unload the dishwasher. I always have a friend at my disposal, the kids have a teacher and friend, and every day almost feels like a party--even when things are hard.

It also helps me to slow down and "be"--

I know that with her coming here 3 times a year at 4-6 weeks at a time puts her life in California on hold, Jerry is so very generous to us. It is hard for Mom to join up into small groups, be an active player in California with her traveling back. It is a huge gift to us--Hands of God.

We've been in partial isolation, rest mode if you will. Yesterday we had home church. The kids and I have been going to cyberhymnal checking out different old hymns, Trust and Obey, I Surrender All, and Standing on the Promises are the 3 we are working on right now. We sang those, and read Acts Chapter 7--it was more of a study. It was WONDERFUL, leading the children along, teaching them God's Word.

Praying for our friends who are living with the earthly loss of their child--Praying for their daily walk. With Love.

Friday, January 12, 2007 11:49 PM CST

Hard rain is gonna fall.

It has been raining much.

David and Olivia skated tonight. They love it. I love that they are able to do it.

We had a delightful time in Cincinnati. Bittersweet in many ways for me; I love that town--all that it offers, a GREAT children's hospital (the best in MY book), museums, Krohn's Conservatory, roads which flood wonderful memories, music, all of it. But the people, people you have "history" with--friends who have seen you grow up into a responsible adult, people who I've always admired and loved. Friends, dear.

The kids and I headed to Carew Tower Tuesday.

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We parked at 7th and Vine and walked. It was WINDY and COLD but that only seemed to energize us as we ran down the sidewalk. The only children to be seen. We ate at a very high end seafood restaurant where Olivia obtained a sweet compliment from the waiter. Up the 45 floors, to then get onto the smallest, creakiest elevator _I've_ ever ridden--David glasped his hands and said, "OH LORD please!"--then to the 48th floor where we walked the last--cold, but warm at the same time--the views clear and we were able to talk more on the seven hills of Cincinnati.

Finally back to the car the kids and I detoured over to Krohn's Conservatory where they took photos, drew, explored while I had quiet moments. We also added Mexican jumping beans to our list of pets.

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We met up with Grandma and her slew of friends for dinner. Dear dear people. I love them so.

To bed, then onto another day--a tour of Ginny's art and home, LaRossas with Winkie and Ginny, then back to Ginny's for HUGE bubbles and art. A short visit with Tom and Winkie "Pinkie" as O calls her--in their library and art house. All the treasures collected--displayed. The kids saw and felt it too.

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David, Grandma and Auntie Joyce went to "Rosella's" church Wednesday night. Lary and Rosella are doing an amazing work to the children in that area, feeding them, telling them about the amazing Grace, teaching them--they pick them up and bring them to church. David wants to go back every Wednesday night. We are excited to see how God continues to work in this mission. David had Rosella sign his missionary section in AWANA.

Newport Aquarium was a great way to end a great trip. How can anyone not love that place? We got to pet a baby bat ray, baby leopard shark, guitar fish--David fell for "Sweet Pea" the shark ray--the ONLY one in the Western Hemisphere.

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We picked up Charlie at Papa's (both Papa and Charlie had a grand time) and headed the last miles home.

That night at clay studio, as I was glazing some pieces it occured to me I'd been to 3 states, eaten at Johnny Rockets, pet sharks, watched jelly fish. . .saw my dad.

Olivia's meds for the UTI are over; so far so good. MISSED her Izza.

And David, well, as any boy, is happy to be back with his dog.

Here are a few photos of David's Halfway Dance with Square dancing--the little girl with blue is S. Lyons' daughter (author of the poem!).

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~~~~~~~~~~~~~~~~~
We continue to lift the Noble Family in prayer.
Please pray for our Hope--she had a cardiac cath and is not 100et.

Friday, January 12, 2007 11:49 PM CST

Hard rain is gonna fall.

It has been raining much.

David and Olivia skated tonight. They love it. I love that they are able to do it.

We had a delightful time in Cincinnati. Bittersweet in many ways for me; I love that town--all that it offers, a GREAT children's hospital (the best in MY book), museums, Krohn's Conservatory, roads which flood wonderful memories, music, all of it. But the people, people you have "history" with--friends who have seen you grow up into a responsible adult, people who I've always admired and loved. Friends, dear.

The kids and I headed to Carew Tower Tuesday. We parked at 7th and Vine and walked. It was WINDY and COLD but that only seemed to energize us as we ran down the sidewalk. The only children to be seen. We ate at a very high end seafood restaurant where Olivia obtained a sweet compliment from the waiter. Up the 45 floors, to then get onto the smallest, creakiest elevator _I've_ ever ridden--David glasped his hands and said, "OH LORD please!"--then to the 48th floor where we walked the last--cold, but warm at the same time--the views clear and we were able to talk more on the seven hills of Cincinnati.

Finally back to the car the kids and I detoured over to Krohn's Conservatory where they took photos, drew, explored while I had quiet moments. We also added Mexican jumping beans to our list of pets.

We met up with Grandma and her slew of friends for dinner. Dear dear people. I love them so.

To bed, then onto another day--a tour of Ginny's art and home, LaRossas with Winkie and Ginny, then back to Ginny's for HUGE bubbles and art. A short visit with Tom and Winkie "Pinkie" as O calls her--in their library and art house. All the treasures collected--displayed. The kids saw and felt it too.

David, Grandma and Auntie Joyce went to "Rosella's" church Wednesday night. Lary and Rosella are doing an amazing work to the children in that area, feeding them, telling them about the amazing Grace, teaching them--they pick them up and bring them to church. David wants to go back every Wednesday night. We are excited to see how God continues to work in this mission. David had Rosella sign his missionary section in AWANA.

Newport Aquarium was a great way to end a great trip. How can anyone not love that place? We got to pet a baby bat ray, baby leopard shark, guitar fish--David fell for "Sweet Pea" the shark ray--the ONLY one in the Western Hemisphere.

We picked up Charlie at Papa's (both Papa and Charlie had a grand time) and headed the last miles home.

That night at clay studio, as I was glazing some pieces it occured to me I'd been to 3 states, eaten at Johnny Rockets, pet sharks, watched jelly fish. . .saw my dad.

Olivia's meds for the UTI are over; so far so good. MISSED her Izza.

And David, well, as any boy, is happy to be back with his dog.

We continue to lift the Noble Family in prayer.
Please pray for our Hope--she had a cardiac cath and is not 100% yet.

Sunday, January 7, 2007 1:57 AM CST

1/7/07

Since my mom's return to us here, our lives have slowed to a different pace.
Thank you, Jerry. What a generous gift!

Auntie Midge and Mom took David to his first SQUARE dance! He's been taking lessons and it was THE Half Way Dance which means he got to "dress" the square dance part. I loved hearing it all from the Sisters and then from David.

Meanwhile, Olivia and I took Charlie for a walk (in the dark and rain) and then decided to come in. We headed for the basement for hot glue gunning, painting and clay work. It was a grand time, but hard for me to do anything serious with her little comments. She so loves to paint, draw, all of it--and would constantly if given the opportunity!

So, today was an Auntie Midge Work Day. But yesterday, while I was away, David, Olivia, Auntie M and Grandma had a tea party. How I wished I could quietly sat and watched. Mom said that Midge was commenting on the dark day, David got his light from his bedroom (the sun) so Midge put on her sunglasses--all with full accents from everyone--and REAL tea. So, the kids are into tea.

Thank you, Auntie M for not just working but playing. . .

School Note: David is starting to write without moaning in pain. He finished The Three Little Pigs story--with the Pigs blowing the Wolf house down. Then had to write about someone who does a careful job, he chose folks who work on electric lines! His last story for this week was about a favorite game--He chose Rail Baron. He's been such a great reader, but now to hear/read his thoughts--it is such a different picture. He is also learning how to write letters! It is a fun new frontier.

Running the race!

Thursday, January 4, 2007 0:05 AM CST

I can't stop thinking of Rich, Donna and Kelsey.

Today they buried their son--brother.

Constant prayers for the whole "family" of the Nobles.

Kyle will be greatly missed.

~~~~~~~~~~~~~~

Olivia has a UTI. Seems almost silly to even mention. We rode to Cincy and back today.

~~~~~~~~~~~~~~

Thank you for your prayers.

Tuesday, January 2, 2007 2:39 PM CST

Oh, sweet daughter of mine.

The past week or so has been such a healing time for her and me, emotionally, spiritually...she is growing so much and her footing at times is slippery. Walking in and out of different worlds--I just want her to know--and rely on THE ONE--and look to the HOPE that offers.

She endured stabbing pain and lacked much sleep a few nights ago. The next morning Grandma, Olivia and I hit the lab outside of St Louis to leave a urine sample to get cultures.

Our homecare company (as always) is ON it and has been keeping up with the status, and so is the hospital. Our Dr. K has asked for us to come to clinic tomorrow so she can be seen. She doesn't know yet--after a long ride to Dave's family--I'm hoping riding in the truck will make it less the long trip feel. Maybe a quick side trip to the art museum afterwards too--something...

My mom has a sinus infection, which means horrible headaches, but she was seen at the URGENT CARE today and will be on the mend--so she, David, CHARLIE (said will affection), and Izza and SUGARbelle will hold the fort down--praying the ISLAND DOWN--as our island is due to be delivered tomorrow.

Dave is back at work tomorrow too, of course, but that is all right--someone has to work around here!

I'm still reeling with sorrow--sometimes hidden--for the Noble family. It is hard for people to understand how connected we all are. So thankful for those able--or made it possible to be with them at this time.

Hope could use some prayers as well--Natalie's earthy birthday was a few days ago--and she was recovering from. . .a cardiac cath.

Press on.

Friday, December 29, 2006 7:49 AM CST

We lift up the Noble family in prayer.

Tuesday, December 26, 2006 11:21 PM CST

Quiet days indeed.

Please pray for the NOBLE family and for ALLISON Clark.

Could be holidays are times of rest for this family. David is off with Papa at his place, along with Charlie. The three boys are having a nice time of it. Dad sent a photo of David EATING PIZZA while playing a GAME on the computer with MORDIE (Dad's bird) on the back of the chair, Midnight the cat behind David on the chair MEOWING as Dad took the photo, and with Charlie, the loyal friend lying behind David's chair on the floor. NO WONDER the boy loves to go there. ANIMALS, COMPUTER and EATING all at once!

It was a bit of a sacrifice for David to go up there, but with Dad leaving on Christmas and once January starts back up--as well as school and all the afternoon small group classes of this and that--time was prime for a David visit.

This Friday we'll ALL head to St Louis area to visit Dave's family for Christmas.

Mom and I watched all of the Lord of the Rings movies. The striking good vs. evil theme made it impossible for me to patiently await seeing the final outcome--although I had seen it before--I relish in knowing that THE LIGHT side, GOOD side...WILL PREVAIL.

And alas, Olivia has been distended which makes it easier to go around without restraining clothes and she had been wearing her Ladybug towel which our California family sent. . .she caught her G tube on one of the art works which lean against the wall.

It seem to take HOURS to fit the tube back into the stoma--but maybe only 30 minutes.

Having to hurt her (replacing the tube) to help her is a strange place to be. Thankfully Dave, mom were here to help encourage but most of all pray that it would go back in--which it did.

And she fell asleep with a giddy, fun spirit again. I had emailed her piano teacher and our dear friend to pray for her. . .thank you, Robin.

Best get some rest--

Sunday, December 24, 2006 8:24 AM CST

Merry Christmas!

Olivia's cold seems to be on the UPswing, Grandma is here and so is Papa. We are hunkered down for our two days of rest and celebration of what God has done for us.

Photos of Charlie to follow. . .

Friday, December 22, 2006 4:24 PM CST

Praying for a peace filled home bound Christmas for our dear friends.

Our little family is now completed with the arrival of "Charlie", David's dog.

A sweet little friend for us all, thank you HEAVENLY FATHER!

Tuesday, December 19, 2006 7:44 AM CST

Join us in lifting these people and their families, doctors in prayer:
Kyle, Colyn, Malisa, Hannah, Zach, and January!

*~*~*~*~*~*~*~*~*~*

Christmas.

It is almost here.

Olivia has been tired, pukey and draining green bile from her Gtube. She did however perk up at Mrs. Robin's yesterday. Piano lessons turned out to be more of a Christmas party. The kids and Robin's Rachel went to the basement and played with their 3 kitties and Popcorn dog. Olivia's sore tummy was soon forgotten. She just pulls the cats into the cradle position and carries them around. How she loves animals, especially those in her close contact. Tomorrow we'll spend the day with Rachel as David will be in Louisville for chess camp. So we'll grab Rachel and head to Louisville for fun.

I love talking with Robin as she IS the Southern Indiana music lady! With her growing up in this area and having played in orchestras, teaching and teaching piano and having two children in orchestras, etc. She knows everyone and can give me her slant and has her hand on the heart of what is going on. I take that for granted at times and when I think about all she does in the community whether it be on a classroom level or to sending meals over to a neighbor or praying with a neighbor--she is top notch. So blessed.

Her oldest son will start David out on violin this JANUARY! We are ALL very excited to see how this will transpire. It will be a great lesson for both B and David!

Olivia then spent the evening with her Keesha. She and her girls made art! Olivia gave hers to David. What a deep blessing.

So Dave, David and I were at the PACK MTG. Our dear CUBmaster is in the hospital and our gracious CUBmaster from last year who is NOW TROOPmaster came to be the guest MC, as well as our children's pastor who came to speak! It was chaotic at first, but it totally amazed me how God just smoothed it all out and made it SO much FUN.

I love working with the parents, but most of all running the Scout store at the end and making it a meaningful fun time for the boys. Scouts and teaching art and even the volunteering I do at Church is such a blessing--it fullfills the GREAT need I have to minister, work with children yet I still can be completely in charge of my own. Thank you, Lord for this--

As with any kids who parents head stuff, they tend to get pushed aside (like we've not even looked at David's handbook) and are the willing helping hands and feet to get it all accomplished. David is no exception. His personality is such that we can do this--he totally knows his handbook inside and out and works in it on his own. He was such a great help last night in setting up and tearing down.

Just like a sibling of a chronic medical kid, David is called to be the hands and feet of gathering needed supplies, of emptying green bile from a puke pan, and for the most part with joy, but there are times--as any human being--when he is tired, or not feeling the greatest himself when his participation is magnified.

This is why I'm so thankful to my dear friends. I shared a little with Mrs. Robin and how she ministered to David yesterday. It makes him feel uncomfortable to talk about deep things unless the lights are out and in bed. Bless his heart. Praying that we can keep him open to communication--he is going to be 9 in JULY--getting to some crucial years.

Olivia is either running with full energy or sitting in her uncomfortableness. I tend to not dwell on this because she doesn't. She is like the little kitten, playing playing--then rests.

Funny, my life IS an open book to some certain extent. This journal, I hope, is a testament to God's Amazing Grace and His Mercy which are NEW every morning. That all good things upon my family only come from HIM, not from anything I have done, but all Him. How in my weakness HE is made strong. And that people will know that GOD has a plan for us all--it may not be the plan which is most appealing by our human being--but one day we'll understand it.

I want it for David and Olivia to know that although I am not perfect (THEY of ALL people know this) my love for them runs pretty deep. Sometimes too deep--as I need to reserve the deepest of love to my Creator.

And for Dave, my dear dear husband. God knew I so needed him. One who loves me for better and worse for sure. I'm not the easiest to live around, with, by--I'm a born leader--go getter in a very passive aggressive sort of way and can be a bit too intense. Dave encourages me in all that I do--Reels me in when I start drowning and has truly become the head of this house spiritually. I praise GOD knowing that He is working not just in my heart, but Dave's (who has become quit the preacher man:).

I praise GOD for Cincinnati Children's who is filled with humans, but people for the most part who want to make a difference and care about their work. For the doctors and nurses God has placed in our path--not by chance but ON a PURPOSE. Dear people.

For our Church Family--Thank you for loving us where we are. Thank you for opportunity to share the talents God has given me.

Well, this day is officially started, IMing with Grandpa Jerry. He and Mom are joining Greg, Kim and CAROLYN in San Fransisco to see the NUTCRACKER and to it UP at some fine dining establishments. What fun! Greg, Kim and Carolyn had an amazing weekend there with Peter and the Wolf, Cable Cars and all other fun things a city provides.

I CAN'T wait to have MOM here.

THANK YOU JESUS.

Thursday, December 14, 2006 7:47 AM CST

We are going to LOUNGE today. We've been busying making goodies (crafts--not foods) and doing this and that--it is time for rest.

My body tells me, so does David's. Olivia slept through "adult" church last night opting out of AWANA. It was my Wednesday and David wanted to go as well. I slowly started to feel the throat action and by the time we had to leave I was hurting. So canceled the rest of this week and here we are...praying for rest.

We continue to pray for our many dear friends.

Sunday, December 10, 2006 3:44 PM CST

Unexpected blessings.

Giving is better than receiving, for in the giving one receives so much.

I told this to Mrs. Jewell today as she thanked me personally for taking out time to visit her and all at the Bennett House.

What a rich and raw experience it is. Many a months I've walked in, weary and tired and half tempted to call and say we can't come, but in the giving the blessing is deep.

Olivia's twisted mulitcolored pipe cleaners of her own making and the melted plastic bead ornaments were such a hit. The "workers" said they'd go knock on doors, but I asked if we could. I did the first few and before I knew it D and O were knocking on doors waiting to invited, there at the door they stood encouraging the folks out the lobby for a singin'. We had a few who wanted to watch the "game"--something about the Colts--we giggled and passed their gift to them.

Olivia started out the "program" with her very own Jingle Bells on the piano, I coaxed her to keep playing it allowing for those who were coming to come. Then came David and I playing the Ukrainian Bell Carol--which on a VERY out of tune piano made for some WILD sounds.

When I was a little girl my mother told me while driving in the car that there was a flute in the backseat. I didn't want to PLAY an instrument; piano was going to be the DEATH of me--and how God touched my mother's heart so long ago and now how He touched my heart. . .

So there I played many Christmas carols for our friends on the flute.

D and O alternated on the 12 Days of Christmas, then we all sang Silent Night, AWAY in the MANGER and I sang the verses to GOD REST YE MERRY GENTLEMEN with everyone singing the refrain.

Then on to hymns--I drumming along on the piano and oh how we all worshiped this day to the KING OF KINDS and LORD OF LORDS

TIDINGS Of comfort and JOY.

COMFORT and JOY.

Wednesday, December 6, 2006 10:38 PM CST

Amazing days. We've had a lot of face time with friends and cleaning house, preparing for Christmas, etc.

Tonight at AWANA Olivia was leaking out her J. It had made it's way to the vest even. Sometimes I am knocked over with what she holds to herself--what she does to keep herself from going nuts.

Tears were apparent as soon as she saw me, but was fine with staying as long as I stayed there as well.

When we got home she ASKED ME to take out the Jtube. I did and there was some undigested food stuck at the opening of the stoma. As soon as it POPPED out--we had OLD FAITHFUL. She was experimenting with pushing and at one point I'd say a good 3 feet or close to it--spewed--even hit her prepared TPN! AAAAACH!

I have that achy heart feeling tonight. That, whoa, she is a walking determined child. I feel like I take her strength for granted.

.

Anxious for my mom's arrival. I feel the need to close up shop, light the fire and "be".

Wednesday, November 29, 2006 10:51 PM CST

David is off with Papa for the weekend. I took him up after his square dance Thursday night. It was such a beautiful night drive with a steady rain. We listened to some preaching tape then the quiet of the rain. Be Still and KNOW I am GOD.

So the two went over to Cincinnati's Convention Center for something called Red's Fest. From what I gathered over the phone, David got his photo taken with several players--one of his favorites--all going towards charities. I can't wait to see the photos. Papa sounded like he was having so much fun. The two of them are such pals--Reds, trains, animals, their travels--so thankful.

Olivia and I were quiet most of Friday as I was pretty whipped having gone grocery shopping and getting home around 2:30 AM.

BUT the evening was anything but quiet. Olivia and I went to Graceland's skate night. Because I'm now volunteering she gets to skate both sessions--from 6:30-9:30! Midpoint during the two sessions a time of devotion and races, games. IT was A BLAST! I gave a short devotion and am JUST SO BLESSED by the folks--GOD IS SO GOOD. It is a great time to get to know the children and just hang.

And race time, Olivia lined up for the race--and she won! Last year she came in last each time--wobbly and even falling a few times--my heart would ache for her, (David too) as it is so hard to be a beginner.

So, she won a candybar. She wanted to get it for David.

It was just a very cool evening--and this weekend there is nothing we HAVE to do at any certain time--YEAH!

Dave will be busy working on the house--and I too, Olivia giving us her reports on the kitties and crafting all the way.

Bless you.

Monday, November 27, 2006 8:05 AM CST

Clay Class!

A photo of the studio with the empty kiln. Everyone is inside celebrating!

Taking the bricks away. . .

Casey-

Norman the instructor.

So finally our work is completed. Well, most of it. A photo of our dining table to follow of all the beautiful pieces by David, Olivia and Sheila!

Blessings.

Friday, November 24, 2006 8:34 AM CST

NEW PHOTOS on PHOTO PAGE--
Worhip Choir, Piano Playing and--iVideo!

HAPPY BIRTHDAY MY DEAR DAVE!

I do believe Marsha, you are the 2nd to wish him a new year.

His present from us to him is to let him DO his thing--working on the trim of the windows. He is such a great man, works hard all week, works on the house, helps with O's TPN EVERY night all of it. SO thankful for my husband.

David won his first RISK game yesterday from Dave and me. He is elated as this is his first game to win from his parents and we didn't even cut him ANY slack.

Nice to have Dad here. Very laid back yesterday--and hoping for that again today.

Be blessed.

Tuesday, November 21, 2006 11:05 PM CST

Thanksgiving.

Every day thankful for yet another.

This season is so rich in treasured moments, but yet can be so drenched in pain.

Everyone has felt it, all, but to different degrees. Loss. Pain. Regret.

Life has that sweet release of having loved, having had those deep times, but again the depth which has been experienced in love will then be many times over deeper in sorrow of loss.

I think of dear friends who have lost a child, a husband, a parent, a friend. . .

Grab tightly to this moment.

Monday, November 20, 2006 6:47 AM CST

THANKSGIVING WEEK!

So MANY blessings--so MUCH to thank GOD--

There is much pain in this world; I can't imagine going through anything without Him.

Dave and I gave our testimony in church. As usual I was a blubbering mess--Dave did a GREAT work. So thankful GOD gave me an anchor in a husband.

Our dear friend were there--and like the great friends they are--there to encourage, hug, and accept us for who we are. It was a great night all around.

I had several people approach me who have seen me around or have some sort of contact with me who had no idea about Olivia. . . us. So, I believe that was a God thing--a good thing.

Prior, Olivia FOUGHT me tooth and nail about having a bath which means a dressing change. Dave as so good with her--I was in low mode--Olivia was in lock down lip mode, huge tears mode--and when I asked her to put her head back to wash her hair in the tub--without her glasses she looks like my baby girl....again--

So, I ask her (testing the level), Do you want to ride with Daddy or me--and she said, mama. I knew then she was just trying her independent wings--she really didn't feel like having the dressing change--it isn't her favorite thing.

God is good.

Friday, November 17, 2006 11:12 PM CST

What an AMAZING week.

We paced ourselves and finished the race. Although, the weekend promises more--tomorrow bright and early Dave and David will SCOUT for FOOD, then the kids and I will go to our 2nd to last clay class. (WHY DIDN'T I TAKE PHOTOS?). Sunday the kids and I will stop by The Bennett House and then back to church for a special Thanksgiving service. Dave and I have been asked to share a testimony; at first I was not up for it, but now I can't wait. I want to tell my Brothers and Sisters what our Father has done for us.

Long day--full day. So glad that the kids and I took Wednesday and Thursday and totally kicked into LOW slow mode. Today we were at church 12 HOURS! Art then back for CUBANAPOLIS (a make up cuboree) and it was also SKATE NIGHT! It was so fun--O skated for 3 HOURS--two of my girl friends kept watch of her while I was over with the Scouts-Dave and David. I walked a bit with Olivia but it was good for her to hang with her girl friend.

Sherri, Thank you.

I see Sherri coming looking through the crowd; I knew it was for me--O's clip on her pouch came off--and oh yeah--it was a big spill.

Her pants, panties, socks, and skates all soiled. Sherri ran over to the church and got clothes for O out of the closet--making them making cute to boot.

God, You are such a loving Father. Tender Spirit and Forgiving Son.

Cleaned up--(and a STINKY bathroom)--O was back at it. I got to watch David participate in all his stuff--Pinewood Derby, (I can't even begin to remember the technical names of the Space and Boat, but fun!) and other races. He was so tired though; his allergies/asthma taking a bit of a toll.

As Dave carried Olivia out to the car--she says over her daddy's shoulder--Mama, I love you.

We get home--let Kitten out (Isabella--which we call her just about EVERYTHING BUT) instant entertainment--and when I come in to hook up TPN; O is sound asleep.

Big day--made by GOD!

Tuesday, November 14, 2006 10:45 PM CST

We know of several young people who are struggling, baffling their doctors, awaiting new results, all of it. It is too much to hold onto.

Cast your burdens on Jesus for He cares for you.

Olivia was pukey again tonight. It MUST be TUESDAY. She was sick last Tuesday as well. Hence, chronic.

We are all so terminal--I am just so thankful we can be ETERNAL through JESUS CHRIST.

Oh I want to See HIM look upon His face--there to sing forever of His saving Grace.

Jesus.

Thank you--Giver of ALL life.

Sunday, November 12, 2006 8:10 PM CST

Please pray for Kyle. He is a newly turned 8 year old boy who is struggling for his life. His parents have been such an anchor for many.

We had hoped at one point they could come and visit, but medical life got in the way.

Precious family.

bless you.

Thursday, November 9, 2006 10:08 PM CST

19.2 kg and 44 inches.

Olivia's increased TPN and lipids every night has made a difference. She is growing, gaining weight and has a good mass on her bones. There are times which I allow myself that moment to examine her TPN bag--and at the bottom it says, 7 days a week. It kind of blows me away. Yes, 7 days a week. She has to have this, every day.

Clinic overall was the coming together of friends who know us in a way not many do. Gerry noticing Olivia's healed yet a trace of dry; she remembered how Olivia hates to have anything on her lips.

And could be that our Dr. K may do O's homecare conference. How we'd love to be on that boat, too. We shall see. But the roar when I stated that now, if Gerry were going--Dave would make sure we'd make it. Nurses like her are God sent.

After the fun, and celebration really--putting things into perspective--yeah, she ate some things which caused problems, but she is healthy.

Flu shot.

Olivia crawled into my lap and into her shell. It will always amaze me how a shot will turn the bravest kid into a ball of tears. The kind that are silent and full for when they finally hit they leave huge spots.

There we sat with the elma cream in place, awaiting the needle.

With it's entrance Olivia finally gave a cry, and Gerry a kiss on her patient's head.

Later we spoke of it, Olivia proud that she received such a kiss.

~~~~~

David escaped having spent the day with Dave--who FINALLY took some time off.

So, Olivia and I left early and visited Cincinnati's art museum and had lunch in it's quaint cafe. There we sat, mother and daughter.

Thank you, Jesus.

Wednesday, November 8, 2006 2:20 PM CST

The day is cloudy, Olivia had a rough day yesterday with vomiting--and on through into the sleepy time night. She seems better today, although she's not been out of bed.

I've not pressured her to rise up for it has been hard all around here today.

She received an extra Liter of fluids and enjoying watching Little House (and me too) and Drive Thru History--good old escape stuff--good learning--life lessons and history. Love it.

Thank you to Mike and his family for running a hard race--and all those who gave their time, money, efforts as well. It is the Indiana folks who will be hurt in the end. The Sodrel family are amazing folks; God bless them and keep them.

And may God give rest to those in pain--relief and love, forgiveness and comfort.

God save the people.

Monday, November 6, 2006 8:37 AM CST

Still I come and pour my heart out--I've tried many times to not be so bleedy but I think until I can get back to painting on a regular basis, typing it out is healing enough.

Life.

The diversity of where people are spiritually, emotionally, physically, etc. It sure can get sticky.

I look at just the diversity around me in my immediate world. How many folks have loved their child, cared for their child, did everything they could for their child and their baby dies. How they can walk around such people even like me and maintain their heart's placement is beyond me. (It would have to be God living in me) The fortitude to continue on for all the right reasons is a miracle.

Then there are those who live in a constant balance of severe chronic to terminal status. How their lives are broken down to the pure pleasure of seeing their child awake, smile, reach for them. You can bet there is no time for petty living.

The category (if you will) in which we live is not terminal (well, wait, aren't we ALL terminal?) but the constant work which requires to stay in that chronic to well stage. Masking most of the medical differences striving to preserve a child's childhood.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Sunday's dedication of the new children's building was a blessing. Sherri Lyon's spoke. She is a gifted woman of God. David did his part and cut his part of the ribbon then carrying the scissors the correct way--galloped over to Ollie for her to snip. I had to giggle (my first reaction was to say--DO NOT RUN with scissors!).

This week will prove to be yet another action packed--paced remaining days.

Today we'll hit piano and errands, set up for scouts--it is our family's turn to lead the den meeting tonight.

We are continuing in prayer for Mike Sodrel's re election.

The kids and I were able to bring home a few of our final fired clay pieces! They are SO ADORABLE! We are displaying them on the dining room table--and figuring who gets what. It'll be very hard to part with anything--but there will be so much (gifts!)--so as long as I get selected few!

Please remember, Kyle, Hannah, January, Sean, Kyle J, Brittany. . .and our whole TPNsupport family.

Sunday, November 5, 2006 6:51 AM CST

As always, if you could pray for our dear friends from TPNsupport. There are a few who are in a chronic difficult struggle right now.

I do not want to leave anyone out, so I'll not list, thankfully, God knows.

Bless you on this beautiful Sunday.

Saturday, November 4, 2006 6:46 PM CST

This week would be catergorized as, LEAK FEST.

It has only been going on for 3 days, but that can begin to feel like 1 week. Red J tube area, keeping it dry and clean. Lots of pressure built and we forgot JBAG today while we were at CLAY CLASS. Thinking we'd just glaze a few and head home but the pieces which were at final stage got us all excited and pushed it--she was so wet. The folks there really get a kick out of Olivia and when they find out (see her with her dangling jbag) all that is under her shirt they are amazed.

So, I guess she's been in an obstructive week, did manage to do most of her stuff and tomorrow is yet another climax as our new children's building will be dedicated. Praying that many children will be blessed and will come to Jesus and truly KNOW Him.

Now, onto the election--then clinic, and I'm looking forward to each, taking each day quietly and making sure we have towels, socks and any OTHER CLOTHING!

Anxious to start "school" at home on a more regular basis, but for now there is much going on for outside learning.

:)

Popping Popcorn--then doing O's hair and watching a DRIVE THRU HISTORY video with the kids. COZY up time.

GO MIKE!

We are praying for you~

Tuesday, October 31, 2006 8:36 AM CST

The fall colors are once again into the stage I love best. Deep oranges and reds--I feel God's arms wrapped completely around me. The Autumn sky which many would say Winter, but the contrast of the blue of the sky and the oranges is almost too much for my eye--unless I'm sitting at a canvas.

Today we are heading over the the Forest Discovery Center and then to Hubers which is a generational family owned farm. We'll EAT there. It was my craving when I was pregnant with Olivia. We've not been there much since having found our Foster's farm just around the corner which is MUCH more affordable on LIVE harvest items like PUMPKINS (ORANGE again!).

Yesterday, Olivia didn't feel up to par. Her congestion partly, maybe something else brewing, some DIFFERENT colors showing in her Jbag so she didn't have a piano lesson, but when she saw Mrs. Robin's NEW kitten she sure did PERK. Since I'm still working on the PRESCHOOL Puppet Theater, we met Keesha and her Girls there. O slowly hit the wall, Keesha took her home with her while I got things set up for Scouts.

O loved being at their house all by herself. It was clearly the distraction she needed and she no longer vomited or anything! I called a few times only to relax and enjoy David boy and the Pack Meeting--and to KNOW that Olivia was in loving care.

She even got a new pair of PJs out of the deal.

It is so REfreshing to have a friend who is very in tune not only with the physical aspect of Olivia, but spiritually. PRECIOUS.

Thank you, Jesus.

Saturday, October 28, 2006 8:56 PM CDT

Yes! We were totally blessed ONCE again to see President BUSH IN PERSON!

His coming to Southern Indiana was in support of CONGRESSMAN MIKE SODREL. The energy was amazing. The speech electrifying. The message of truth.

We were surprised to have the opportunity to sit with the Sodrel family which afforded David a Secret Service pin, and I grabbed President Bush's hands as he saw OUR KEESHA and smiled--I just KNEW she had probably given him a taste of her humor earlier--which was true.

USA.

We LIKE MIKE.

I was blown away for most of the time; tears, so thankful for this man whom many hate. I'll not go any farther here.

Olivia laid during most of it as it was hot and she was tired; the cheerleaders sat near her I saw them looking at her. Any other time I would have approached them, but the time wasn't right. She was wearing her Jbag and received fluids on our return. Dark urine, but also a cold coming on--tomorrow the Kids of the King Worship Choir--will sing their first song...all in worship to THE KING.

Thankful for FALLING back on the time; we'll need it for early service!

TO JESUS!

Thursday, October 26, 2006 0:10 AM CDT

Ah clinic was due today, but David has a weird sore throat and is NOT feeling well at all. It could be allergies. He just needs to rest today.

Olivia is doing so well; she looks like she is adding some good meat to her bones.

When I look at her, I'm amazed at God's complete blessing in her.

My children are God's gifts to me. He gave me the desires of my heart through them. David is the little boy I would have picked for me and Olivia is the little girl who could be given to no other.

Tonight during our "talk. . .prayer. . .reading" time I asked Olivia to tell me all about AWANA.

I had dropped them early as I needed (another God given gift) paint tonight on the puppet theater. They were in a room where a little girl kicked David repeatedly. Olivia said she even told her to stop; we talked about other things she could say as well. She is so zealous; she will.

Then during council time it was asked of the children what they wanted to be when they grew up--here we talk about what God would have them to be. . .David said a missionary. Wow. This is something totally new and blesses me beyond. And Olivia said, "I never got a chance to say, but I wanted to say an artist, but I wasn't sure how to say it. I thought maybe, I want to carry on my mother's work."

When she came to me into the preschool room David told me right away that she had fallen in game time. Fell right on her face and her glasses bent and a nice gash above her eyebrow. Now that is my GIRL! A huge hug and a kiss and she started to cry again; she said later she tried so hard NOT to cry, but a little came out.

Tears.

Tomorrow, we'll remain tucked in late, praying for rest and that Daddy remains strong in the midst of all the battles in his world.

Friday, October 20, 2006 7:10 AM CDT

Time for ART again!

The kids and I had a more relaxed week. We did manage some clay studio time on Tuesday. We each threw on the wheel--and -I- did it! I centered the clay and made a pot that didn't look all topsy tervy!

I help David and Olivia center their clay then off they go!

I love working on the wheel and with clay. The kids are getting it--how the clay when off center pushes our hands out of control. How wonderful it is when we are centered on GOD!

Olivia loves Mr. Norman. Both are concerned what will happen with class is over. I am too! Dave is interetsed in taking a class! WOULD BE SO GOOD FOR HIM!

So today is ART class. I've taken the younger classes VERY slowly, introducing to them value as they learn to draw the different forms as well as new medium. Chalk pastel so far is a hit for all children. Today I'll introduce pen and ink to the Intermediate. They will LOVE it. I can't wait to see what they do.

We are doing a lot of exercises still which I'm praying will be a good base or foundation.

Olivia is doing so well! She had an obstructive day on Wednesday; she was not up for the fun frenzy at AWANA that night so we opted out. The next day she was back to go go go! We hit the bank, Our Fav restaraunt (A NICE RESTAURANT) for breakfast then off to grocery shopping where we redeemed COINS! It was fun to watch them get sucked in and counted.

Olivia loves to sing her Jesus songs EVERY where she goes. She keeps saying--"SING, SO the WORLD can hear YOU!"

Praying for all our dear friends far and near. We want to lift up Mike Sodrel to Jesus for his faithful service to the 9th District of Indiana and his love for God, Country and Family.

We lift up our TPNsupport group, and Cousin Mindy--she looks great!

Wednesday, October 18, 2006 0:20 AM CDT

http://www.boston.com/partners/worldnow/necn.html?catID=80777

A short piece about Mitochondrial Disease.

Our children's pastor is having his gallbladder taken out tomorrow. We know so many children who have undergone this--I half heartedly mentioned it to Olivia--that maybe one day she may produce "stones" and have to haver hers taken out.

Ouch. Never under estimate. She asked over and over, so tonight we looked up the gallbladder, saw some stones--I thought they were a curious color, almost pretty, and David said, maybe something to collect.

Read about the liver, small intestine, again.

I have to share these few stories. A friend overheard Olivia and her daughter. Olivia was sharing how her "doctor" scared her. (we talked it through some more tonight, but she was in a silly mode)--it is his mustache! Then this friend's daugther--said, Olivia, you have to be the bravest person I know--Olivia pipes up--Oh no, my daddy is--he had to have his EYE taken out once for surgery.

Just so thankful for good friends and daddy-o.

Monday, October 16, 2006 7:52 AM CDT

I finally got to see A LION in the HOUSE. It was a documentary filmed at CCHMC's oncology unit. It is not for the faint of heart by any means and blew away any reality TV garbage which floats around these days. It was a bit close to home, opening parts about other children too who have been precious to us.

So another week is ahead of us. Olivia had some discomfort last night before falling to sleep. It was the first time in a LONG time that has happened.

She and I went to the grocery and clothing store, came home to Dave and David conquering the world--RISK.

We took it easy this weekend. The kids and I had our 3rd clay class; we began the process of learning how to THROW ON THE WHEEL! I had ALWAYS wanted to learn this. I'm completely excited, the kids did great, with Mr Norman and Miss Jennifer's help.

I just keep thinking about vessels.

To Jesus!

Saturday, October 14, 2006 3:38 AM CDT

Ebbing and flowing.

Olivia would more than anything love a kitten or a pony. Papa is working on fencing around his barn a space for a mini horse. He has basically done this on his own, up and down his tractor digging the holes for the posts. The kids sweep out the barn area pretty much every time they go up there. She wants to raise a kitten as a baby. She has such mothering instincts. If there is a lull at any point of the day she will be found wrapped around Sugarbelle.

But as she spoke the other night, she wants something "life-lasting" in terms of her "WISH"~~ She wants something which she can enjoy for many years.

To hear her describe it, it sounds like a mixture of a mini castle with trap doors, moats, draw bridge kind of thing. In essence she wants a little all year playhouse which she can put all her art things and share with David. She at one point mentioned a green house.

Sugarbelle kitty continues to be a blessing. The animal thing is a deep thing right now for me. We had prayed for a kitty. And she is such an incredible fit to our home. She loves to be invited into the space. She is frisky in the morning and loves to swish Olivia's crochet chains on the hardwood floor. I just love what she brings to the home. She is very vocal too, so she and Olivia get along great.

It is so good to have Dave home. I didn't do well with his absence this time. I felt weary.

Looking forward to a peaceful, restful weekend.

Love to all.

Wednesday, October 11, 2006 10:17 PM CDT

Dave is out of town--coming home late Thursday night. The lack of sleep really plays havoc on my every part.

Olivia is doing G*R*E*A*T! She has taken over preparing and giving the ZELNORM. We are getting good school in, but not all that _I_ would like to do with them at home. I'm going to let go of it for now with all their outside stuff going on. She is enjoying and IS participating on a different level this year. My dear friend picked David and Olivia and took them to Spanish then over to choir--she didn't want to go at first, but relished it as far as I could tell. Hoping to do more of this sort of thing as I'm in GREAT need of some time at home--which I could get if we didn't do this other cool stuff, but as long as they can--she can be 8 minutes away--thriving and safe, then. . .let's go for it.

Olivia has had a few interesting comments. She wondered if she were to attend public school--maybe she and David could turns hearts over to Jesus. And then tonight while laying between them we were discussing her MAW. First time in a long time I've brought it up, but obviously she and David have had a pretty intricate discussion. She said she wanted something "life lasting". And then to top it off, she reminded me that our clay class would be over in November and we would have Saturdays back. Oh my, she is such a mother. Supplying David and me with more than enough kisses throughout the day.

Tonight at AWANA a girl asked her what was under her shirt. Olivia said, "tubes". She's not had to be ready with an answer in this regard in a while, so we talked over her "speech". We talked about having different needs, extra needs at times, and what it could mean. It is hard when one appears to be "normal" (ahem, what is normal?)--and for the most part we'll just go with that.

She has the cutest song, "MAILMAN" for piano. "Mailman, I'm so tired of waiting" rest rest rest rest "Waiting." rest rest rest rest "Waiting" rest rest "for YOOOOOOOOOOOOOOOOOOOOOOOOOOOOOU". She sings it as she plays. Fun.

So, we are plugging along--thankful for these very VERY good days. Her flares seem to come and go as a wave.

We miss our friends and family far away. Let us know you are out there!
Love!

Friday, October 6, 2006 8:10 AM CDT

A day does make a difference, sometimes even a night or an hour. Olivia bounced back and had a great day yesterday. Last night we had our first Keepers of the Faith meeting. It is designed for girls and their Mamas. A few of our friends are doing it with us; it will be a blessed time for sure.

So today is ART day--all day we'll be gone--to me it is a gift.

I can't wait to see what ALL the children do within their picture planes.

May we all soar closer to our Creator this day.

Thursday, October 5, 2006 1:12 AM CDT

David and I were able to go to a "debate" at IUS last night. David and I prayed for Mike Sodrel as he spoke. I've never been very political in my life always exercising my right to vote but not really reading up and making an informed opinion. I have to say my brother, step Dad and now dear friend's influence has made it clear it is time to get serious. It is easy to get passionate over our 9th District Congressional race with someone like Mike Sodrel. A man who doesn't compartmentalize his life. Someone who is NOT a politician. At the rally, David and Olivia brought their own handpainted signs--David's read--IF I could VOTE it would be for SODREL and O's was more to the point of VOTE SODREL. I was moved by the conversing at the rally. Mrs. Sodrel's passion shone and I am an emotional person, but can be skeptcial but these folks are real and they are fighting for the real deal. Congressman Sodrel spoke with such GODLY wisdom at the "show" so thankful he is willing to spend the TIME, and EFFORT. Olivia so wanted to go, but she was pooped. She asked, "will he be speaking again soon?" This froma 6 year old. When he and Mrs. Sodrel arrived at the Rally--David and Olivia ran to him. OLIVIA! One who keeps her cards to her vest--as a friend once commented--so true!

No AWANA for Olivia tonight. Her belly was so distended and she was pukey.

Praying she'll feel better tomorrow.

I'm just so thankful for friends who don't hold me to the wire on commitments--AKA plans. It is so special when God sends such people into our lives. Giving allowances for being sick, yet, not focusing entirely on it, not trying to fix it, nor telling me over and over how thankful for having healthy children, not comparing, but encouraging.

Had hoped to do LIBRARY school tomorrow with our friends, but I was told we needed to stay home--which will be nice after a hard night.

What a great gift a true friend is.

Yes.

Press on.

Monday, October 2, 2006 11:48 PM CDT

Glimpse.

Tonight was Scouts. David had an absolute blast.

Dave is a den leader and I'm committee chair.

Olivia and I had hoped to escape out early and have some one on one girl time. We are realizing that is precious.

BUT--it was our first REAL den meetings and there was a lot for me to do. Olivia and I ended up staying afterwards with CM and his son and another denleader and his son.

The major blessing:

As I'm trying to gather the information (this scout stuff can sound like Greek after a while) I look over and there is Olivia playing a simple game of Hide and Seek with these two boys--3 and 5 graders. Then after the older boy leaves with his Daddy Olivia is left with W the Bearscout. She is now wearing his hat and Neckerchief. BEAMING.

We get into the van driving home and she is just SO amazed that she has two friends who are BOYS and her VERY own brother was not there and that these boys do not have sisters, but when I told her they did she seemed doublely impressed with the fact they would still play with her.

( I held my breath so thinking she was going to comment about her having tubes--she had a 4 inch drainage stain on her front--I wonder--what kids THINK about that sort of thing? )

Olivia is now giving her own tube meds, getting her supplies for over night cath and today she clamped her lipids and unscrewed them, turned off the pump and took them out and through them away. She is emptying her own urine bag in the toilet, not to mention her emptying her own pouch and making her bed. She takes out the bathroom garbages and empties into a larger and unloads the dishwasher. She is a vital part of our family. She is working hard at her chores (she and David often work together and make a game out of it), she is doing very WELL in school!

She is reading above her standard 1st grade reader. She LOVES math, loves to draw. . .and had an excellent piano lesson.

The cool thing about Olivia is she will go around singing songs to Jesus.

And it is TO HIM--I owe it all.

Wednesday, September 27, 2006 7:27 AM CDT

Today is a special day. It is MY Mama's birthday. I want to announce to all what a great friend she is to me. She amazes me how much she gives to her children and grandchildren. Her ministry to our family has been priceless. A gift, from God.

Love you, Mom. Grandma Lodgie.

Olivia has been having FABULOUS days.

!

Sunday, September 24, 2006 8:19 AM CDT

Yes, we are home.

If anyone looked at the national weather--our area got hit hard with rain.

Dave and David stuck it out as long as they could Friday night, but came home around midnight to amazing show of lightening and RAIN. They returned to the camp Saturday to get in archery, bb guns and leather tooling, but everyone was told to take their tents and GO by 2 PM.

We had Ollie visiting with us and we made rag rugs.

Olivia continues to be tired. She took a huge long nap, hard down kind phone next to her didn't wake her, nor my getting up from her. . .She is in healing mode I do believe.

While in the hospital she had alarming low blood pressures. And we tried to wake her which we did, but she tends to run low, BUT BUT BUT (lots of BUTS) it concerns me.

That and the weird breathing she tends to do when she is extremely tired. She does it while in California and on the way home too if she sleeps while flying. I felt her do it a couple of times at home, but it isn't a regular thing.

Our house is (and will be) still in repair, the flooring is beautiful but now it is time to get painting and get the trim back up and on and on--we will be redesigning an island in the kitchen. Felt as if we were to have a "table" rather than a "bar" island and am excited that God revealed.

There is a new week before us; praying that we can get trhough school in time to get house (long term) house things done.

Life interuppted can be discouraging, but BUT BUT--

WE KNOW WHO IS RIGHT HERE and in CONTROL.

Cool.

Thursday, September 21, 2006 8:15 PM CDT

We are home.

It was a mild interuption in our life. All is good.

Olivia was in the play room today and met TONY the TIGER. Funny.

We had some good mama and daughter time.

Dave and David are off to Cub o Ree this weekend...so more time for Olivia and me.

Wednesday, September 20, 2006 9:42 AM CDT

I don't see it being a big stay--Olivia has a thing for spiking a temp getting us out of the house and in the "
big" house for a few days. . .

We had driven to Cincy just yesterday for iron infusion. Getting out early decided to hit Papa's and go to dinner with him. Got home and O was hot. We arrived in Cincy Children's at midnight and into a room at 5 AM. I was a regular comedian as I was so TIRED, but I think my daughter thinks I'm pretty cool.

We've been listening to some awesome preaching tapes. God is SO amazing. Talking about our thoughts--where they can take you--I started down the woe is me path, but Glory to GOD!

One thing I have noticed lately with Olivia--when we had A LONG walk back to the car in INDY after our conference--she was so tired and I have a load I was carrying already--she started to sing "Victory in Jesus"--and we sang it out on the street. . . again last night she sang her spiritual hymn in the truck until she fell asleep and again while waiting and growing frustrated (ER waits:) she and I began singing Near the Cross at which after she went into a whole other worship song. . .very cool stuff.

Just lovin' Jesus all the day long.

*******

No art classes on Friday (I will miss this so much). I know I will need to have major regrouping/recharing to start next week. God is my Strength.

Sunday, September 10, 2006 8:55 PM CDT

It is official. I shall no longer be SheDeKold@aol.com, but SDeKold@mac.com.

This MacBook Pro that Greg gave me is amazing.

Just tonight my brother sent me a birthday gift. . .Jars of Clay CD, GOOD MONSTERS, an amazing body of work. Jars of Clay's Redemption Songs, THE MESSAGE-Psalms, KEVIN MAX'sThe IMPOSTER, Casting Crowns-Lifesong, these are my top CDs which are flooding through my heart and soul, almost continuously at times.

But this entry almost seems to belong on the "other" site, so on with the other kind of life.

Olivia and I went to Indy for the Regional Conference for Oley Foundation. I have to say it was one of most intimate conferences I've ever been to--small, yes, but I was actually afforded time to ask a question at a round table. Maybe I'm just growing up, who knows. Olivia passed out her crochet chains. She won't say much, and needs time to warm up--everyone is so nonjudgey about that; sweet.

So, this conference was attached to a MACDADDY one--Association of Venous Access--the kind of conference for RN/Docs--and so we were able to walk the exhibit because Oley had a booth. "Are you her helper?" Olivia was almost offended. It was so interesting seeing all the catheters, pumps, thises and thats. . .Olivia said she was going to have nightmares--with the many exhibits--some showed bodies with several accesses. . .

There was a retired doctor there who had come up with a highly successful gadget to put on an arm with a PICC line. When I told him about Olivia having a central line, ostomy, tubes--he started to CRY! Said he would make one for free...kind people are precious gifts from God. We had many little gifts from God. They have always been there, just able to see them more clearly.

One strange moment as I walked slowly looking at the exhibits. I thought of the first time I went to an educational conference. And it hit me.

I'm a home teacher--sometimes, many times classroom teachers misunderstanding why I would want to do what I do with my own children. Having to prove, and then as if one of the displays had reached out and pricked with a needle. . .
I'm a home nurse. WAIT? WAIT?

Oh my Dear God, You are amazing--you took this skinny little girl who was too afraid to tell her 2nd grade teacher why she is crying...because she got a bad grade on a paper and said it was because she was hungry.
You sought me over and over again. You.
You took me. . .and taught me how to do things I never desired, but gave me a longing for it, knowing that I have to and will. You were right there. Even though I wasn't calling on You, not yet. I didn't truly know, You my Dear God--The Creator.

You did this. And in doing this gave me new eyes, ears, touch, even a deeper heart.

You can turn me inside out.

Wait. You ARE in every part of this life.
You. There is no separating You from me. You.

Thursday, September 7, 2006 7:34 AM CDT

Olivia had a rough morning yesterday with amazing amounts of output and full fledge vomiting. So I switched TPN to fluids and she held her own all day.

BOTH the kiddos went to AWANA last night. Olivia was so excited as it was crazy sock night--so after their work they each put on a pair of white socks and colored them with marker. They were so proud.

O was just so happy; it was such an answered prayer.

School is going great. I'm having fun spending time with each child alone. They both did the Ferris Wheel song (language arts) which is HARD for me! But last night I heard Olivia singing it again and I do think she has GOT it!

As soon as they awaken we'll jump in the van to draw labs, maybe breakfast out and stop by church to see how things are looking for the worship ministry event tonight.

All to Jesus

Monday, September 4, 2006 4:10 PM CDT

Labor Day 2006

Things are working out for Olivia and I to make the Oley regional conference in INDY this Saturday. I feel that this is on the radar for Olivia's needs, her reaching out and finding a safe place where she is "like" others. I see this as a much bigger opportunity eventually in this area.

Many times in life we wish we could see the future. This season is one I'm glad God kept away from me. With the house in rework repair, school beginning, outside commitments, and many other things"--I think I would have dreaded this--felt like spinning off track, but instead--relying on His direction.

It would be so much easier to send "them" away, so I could accomplish all this world says I should, but in time, keeping the important things top of the list.

May be in 2 weeks before Dave gets the kids to St Louis which gives me extra time to really decide on paint, gives O and I the blessing of our trip to INDY together.

Our riding mower didn't start. In examing it two baby mice popped out and a mommy escaping. The babies can't be much more than 2 days old. I think of babies who are sick right now, unable to feel their Mama's arms--Olivia is very sensitive to this.

So now we have two hairless babies, trembling and shaking in a cozy cotton haven for now.

David's been riding his unicycle and Olivia riding her (well, actually David's hamster, but since her's is "gone" she has taken over Snoopy) hamster around in her baby buggy.

FULL time school tomorrow.

Day 3 of ABX today.

Labs in two days to check on her potassium.

And Lord Jesus...at any time.

Friday, September 1, 2006 7:55 AM CDT

Early Sunday around 1:30 AM

Miss Snickle is taking Rocephin (MED BALL, which SHE LOVES--"it's so cute") once a day, her vomiting subsided today, but J is still pretty much in a bad way, not to even mention G. No more extensive output from G and J, but now into the dumping out the ileostomy. She has been such a sweet trooper and is rising the challenge. She is working very hard to keep her J dry and with it's powder.

We were SO blessed with the fact Rocephin is something we've given before therefore NO UNWANTED trip to local (YIKES) ER. All the links (GI fellow, to Dr K, the two different homecare companies) were clearly welded nicely! A blessing when things work out.

We ended the day with beginning a game of Risk with Dave, and David and me. Oh boy, this will be fun.

Keeping the real soldiers in our prayers.

And for those children meeting major challenges we ask for those around them to love them like Jesus.

VICTORY in JESUS!

Time for a medical minute update:

September 1

Our little darling is growing out some nasty bugs and has been declared having an UTI. Along with that with all the vomiting (UTI related) her labs were off, therefore the change in TPN. Plus, she is low on iron and dehydrated. So, that is it all in a nutshell.

Since the sensitivies are not known we have no ABX until tomorrow at which time her doctor would like for the first dose to be given at our local ER. Then we are praying to see a feelin' better O!

I had a lovely night away seeing Miss Donna, Jordie and my Dad over in Louisville. My heart was so heavy from the change of plans--Our STL family once again not being able to see D and O and the much awaited time I feel "I THINK" I need. . .but in the end it is all working out.

Jesus is my strength!

P.S. A very special thank you to a gentleman who had a bear made for Olivia. Dave had not brought it home until last night. It was SUCH a blessing and great distraction after the "tube" crisis! We all giggled when we listened to her "talk"...thank you, Mr. Wilson.

. ~ ~. ~ ~. ~ ~. ~ ~. ~ ~. ~ ~. ~ ~. ~ ~.

Yesterday was clinic.

Tried very hard to be early and ended up being LATE. How did THAT happen?

Olivia was pukey all day yesterday, dark green bile as well out her G tube and lots out her J. Kept her on fluids all day (will today as well) and found that her labs show she was dehydrated. Anxioius to talk to Gerry today about her labs.

Olivia has been very private about her tubes (another mom lesson to be learned) at which point at clinic noticed she had a bit of yeast brewing under her J.

But not until we returned home around 10:30 (which will help get the full effect), and I decided to take out J to clean around it. She was not distended or in any kind of pain, but we needed to switch out the tubes. About a L of pre processed (j drainage) came GUSHING out. It was amazingly WILD. I then took out G which she fought me on--only to see it is in a bad way.

So into the shower with overnight cath in and her two tubes out (very uncomfortable feeling to have your tubes out) I cleaned her up--with her SO very concerned about her G tube. The hole was very small and I had to work fast and unable to get the 16 F back in, but withsome work 14 F finally in.

Praying these heal quickly and easily.

Just another reminder.

We met Angie, Noah and Noel for dinner while in Cincinnati. Noah has ALL the same things as Olivia and will be 9 yr old. He is the only other person we know "just like Olivia" and I knew it was time to see them, for the obvious reason of missing Angie so much it hurt. David and Noah became fast friends again (they had come to spend the night 2 years ago) and Noel is a talker and can sign! Olivia and I listened and I had so much fun with Noel. Olivia loved them ALL! I was so surprised thinking she might not, Noel, but she did!

It was WORTH coming home late for that experience. I would replay it as those relationships is what Olivia needs right now.

Dave will pick up the new TPN (7 bags--a weeks worth) with more sodium and potassium , L fluids and new pumps. PRAYING he can still take the kids to St Louis EVERYONE is so looking forward to it.

Please keep Kyle in your prayers.

Thursday, August 31, 2006 7:24 AM CDT

CLINIC!

So glad to be going today to see if Olivia has gained any weight. I seriously doubt it. She looks tiny to me still, but we shall see.

It must be the change of season or something, but she has not been eating much lately and if so, she is sick the rest of the day. Lots of output from G and J, still and little to nothing out her pouch.

So we shall see.

AWANA was a total no go yesterday. She asked if she could go to church with me I realized she was not up to AWANA. I am feeling less than and with working very hard on the house I decided to stay home with her.

Where there is conflict on such issues, I've confided in a friend and her wisdom helped me get back far enough to think more clearly, less small picture. I don't see my NOT signing Olivia up for AWANA, but I do see her doing it differently. I have to be at peace about it, and I am for the most part I am. Thank you for such wisdom and love towards me, friend. You know who you are.

David was very excitd about his new CLIMBER book. His verses this year are going to open a whole new place for him.

THANK YOU to Miss ROBIN for helping -- in getting the house in order!

Dave will take the kids to ST LOUIS this weekend to see his family there. David and Olivia are begging me to go, but just coming back from California and with school, house, art, even scouts to get a grip, I will stay back and get some of my stuff together.

This will be an especially good trip for Olivia since she has been so very connected to me lately. We need some away time to be healthy. We shall see.

ALL to JESUS!

Tuesday, August 29, 2006 11:05 PM CDT

Our day was close to an end when I announced time for our walk.

David is out of sorts; he suggested bike riding, but I wanted peace, quiet, their hands in mine.

As we walked, David ahead and Olivia behind, I reached my hand back as if I were expecting a baton in a relay race and there within a few beats of our steps Olivia's hand connected to mine.

We stayed clasped for most of the walk with David galloping or a mixed up sort of jogging to his next destination--a mailbox, road sign, shadow on the road, always within my view.

We stopped to watch a curious caterpillar and to open Olivia's Gtube--there it ran down into the soil; we always talk about how the ants and other insects probably love it! We switched the Jbag onto the Gtube with much relief!

We talked about AWANA, being around other children, how it feels to be stared at, looked over, inspected, talked about.

She claims she is ugly when wearing her TPNbackpack, or her G or J bag are being used.

So, there we grasped hands walking along the road, stopping to pick up the persistant Jpillow which kept falling off.

But she kept up on a good walk this 2nd day of school.

Saturday, August 26, 2006 11:40 PM CDT

ALL home, all CALL--we are here.

Called Papa, he has 5 baby kittens. Oh Ah My EK!

Friday my girl Keesha called in only the way Keesha can call to decrease my Jet LAG--and up out of the house--

Olivia and I drove to Lilly's restaurant. Keesha and her amplified violin was to be entertaining the diners of this upscale eatery. WHICH SHE DID A WONDERFUL JOB!

Keesha as a dear friend does--pushed, challenged and pushed again the buttons which ignite the creative--and I was there and in my big purse my flute, and in my hand was my daughter's boney hand.

So, I played on Keesha's time off--in between sets--and since I was NOT amplified I was able--and so encouraged by my Keehsa to roam the different intimate rooms of dining. Interestingly timid I was in some ways!

I had never in my musical life improvised in such a way--making up little sonates--using either an old hymn as a base or those dreaded scales! I'm SO thankful for my friend in giving me such a opportunity. . .KEESHA!

Olivia was a dear companinon. SHE IS my daughter but one thing this journey over the last few weeks has solidified is that she and I are companions.

She with her crocheting and needle and thread informed two older ladies (at yet again Keesha's prodding) that the little patchwork was for her kitty.

Oh LA LA! KITTENS!

On another note--David was BUMMED out to say the least that he was unable to walk in the parade today representing our CONGRESSMAN MIKE SODREL. BUT as Mrs. Keesha says--there will ALWAYS be a parade.

BOTH slept as IF they were still in California. God bless the kittens.

With a sweet rain we rejoice in the mercy which falls on us daily.

Be blessed.

Friday, August 25, 2006 1:29 AM CDT

NEW PHOTOS AUGUST 25

~H*O*M*E~

At least we girls are home.

What a nice visit we had out in California with family. As always when leaving Tahoe (and my darling niece) I have to disconnect and not THINK that I'm still in HER state and not WITH HER! It was such a blessing to get the paints out with her, sing, hike, play, and just watch. I know OLIVIA loved EMILY (one of Carolyn�s kitties!).

As many of you may remember David rode the California Zephyr (spelled incorrectly originally) with Papa Virg OUT to California starting in Chicago and arriving in Sacramento! They had a sleeper and it was one of those once in a lifetime memory makers. So we all were in Tahoe together on my Dad's 69th birthday!

David, Olivia, Grandma Lodgie and I headed to La Grange and Grandpa Jerry after Tahoe, Uncle Greg, Aunt Kim and Cousin Carolyn.

We hit Yosemite for the day, met up with Jerry�s sister, mother and other family in Modesto another day but overall it was the relaxing and rhythm of an actual day with my mom and Jerry in their home which was great.

It is SO hot in the day, and cooler at night so every night we opened the windows (unheard of in our HUMID climate!) which allowed for all sorts of night sounds! And then coffee on the deck, discussing the world as we know it and closing the windows in due time. What a haven!

Jerry and Mom then drove David to Sacramento to hitch up with Papa Virg and Uncle Greg. There they had time to see some little steam engine and have dinner before Greg headed on down for work on Monday morning. Papa and David then boarded the train Monday and arrived in Chicago Wednesday; spent the night there and pretty much all day today and are on their way to CINCINNATI as I type. May be even there?

The extra time spent with Mom and Jerry was the icing on the cake. At first, I started getting all amped out about what I NEEDED to be doing in preparation for school, art classes, Scouts, LIFE LIFE LIFE�it was JUST what I needed to regroup and get that grip!

A life perspective grip. LIFE stuff is ALWAYS going to be there�just HOW am I going to handle it? BALANCE! KEEPING it into some sort of HEALTHY balance!

We took a day to watch OLD BLACK AND WHITE MOVIES. We even watched �TO KILL A MOCKINGBIRD� (my fav novel as a teenager) and the next night Olivia was deciding on a movie she said, �We could watch, Kill Two Birds with One Stone��She and I were talking Bette Davis speak after a while! What a hoot!

But a cherished day was when Jerry drove us to Sonora, stopping by a Fish and Game fish hatchery, then on to Sonora for shopping a great lunch at (oh let me see if I can remember) El Jardin�and on to Columbia where Olivia enjoyed panning for gold and walking the powered dust streets. Jerry taught us so much every time we got into the car.

Our flights were hard on the girl. She blew up the higher the plane elevated. At one point I took her to the bathroom to vent her tubes�she was crying, �help me, help me, help me� then clung to my legs and cried �can you just imagine being home right now?��It was HIGH drama.

She vomited (spit up type) all throughout but was so elated to have a wheelchair (and I so glad to be back to my homeland�the MIDWEST) and to see Daddy jumping out from behind a pillar�

AND THE HOUSE! THE big room is 80ompleted (HARDWOOD FLOOR/TIGERWOOD�it is beeeeeeeeeeeeeeeuuuuuuuuuuuuuuuteeeeeeeeeeeeeeeeeeful. And the rest of the house�well�looks like a MAN lived here for 2.5 weeks alone and boxed everything up with everything everywhere�dust, this and that�like we are just moving in�

BUT I�m HOME�with my Dear Husband�who is my love of my life.

In reading the above again, as usual this is in PURE journal form, typing as fast as the words come and not correcting until completely finished and even sometimes NOT proofing the text, but�I was struck by the talk of home�homeland�house�

And got me to thinking of that day�when I go to my true home, my eternal home. . .to be with THE ONE who is the GIVER of all LIFE. . .and all that heaven will be�to be in that moment of facing my Creator, Savior, and Lord.

SO thankful that a few of our friends who are NOW home as well from dreadful hospitalizations which disrupts life.

TO JESUS�SHINE ON!

Thursday, August 17, 2006 5:22 AM CDT

AUGUST 23
THANK YOU Grandma Lodgie and GRANDPA JERRY!

More on our trip to follow; Olivia is feeling great--tomorrow we'll fly home and David is in Chicago with Papa tonight and will be treking to Indiana and picked up by Daddy-O FRIDAY NIGHT!

~~~~~~~~~~~~~~~

August 20

Today Grandpa Jerry and Grandma Lodgie will drive Davidboy to Sacramento to hook up with Papa Virg for their train ride home. It'll be quiet here without him.

Happy BIRTHDAY SAM AND JOE! HUGS from SHEILA TO YOU!

~~~~~~~~~~~~~~.~~~~~~~~~~~~~~~

We had a very quiet day today.

The kids enjoyed watching Tom and Jerry and playing Monopoly with Grandpa Jerry. Mom baked and we two girls made dinner together.

This evening as the kids and I were settling down for the night--David and I playing our game of chess, I plugged in one of Grandma's videos. I chose the one closest to Olivia's birth and it so happened to be THE tape!

It starts out with my singing to David just 7 days before Olivia comes into this world. I'm telling him over and over how much I love him, singing all the little songs we sang; Olivia sitting on the couch, crocheting smiling. . .seeing her in my belly!

It quickly flashes over to her birth day and we hear Sarah Krauskopf telling her husband how one of the girls loves peanut butter on banana as a suitable snack before bed time. Olivia is born, tears all over the place and again Sarah's care to get Olivia nursing as soon as possible was in great timing. I am so blessed to have known her and to have had her present at my daughter's birth to aide in making it a great entry!

On through the tape the kids were amazed as to how cute they were--David at just 21 months, reciting his ABCs, counting and telling us things--I had forgotten really how life before Olivia's surgery had been.

As we watched David would go over to Olivia and hold her again, love on her, and David would run to me--I told him, I've been teaching you since you came into this world--and how much you have learned thus far...

Dave announced today that THE flooring has arrived. If you have been to my house in the recent days (even the last year)--you'll know this is something which is MUCH needed. I know God is in this and the timing perfect. So as we plug along with the house--I'm reminded--and truly want this to be not ours, but His.

Bless you this day and know that HE is God.

Tuesday, August 15, 2006 10:51 AM CDT

Today we'll be traveling to La Grange. We've had a very nice visit in Tahoe but now it is the time to see Grandma's house!

Last night we took the kids down by the "lake" where the waves were good enough to make one feel you were at the beach and with the cinnamon sand all three went into high mode of building a long dam at an alarming pace!

But my artist's mama heart was pumped full when Olivia said, "we need details!" She brought back sticks and pine needles.

This was a confirmation about the "Disney cruise" that Olivia's homecare is offering this year as conference. We've not missed a conference since coming under their care, but Disney really isn't our main focus and I was hesitant in highlighting it, plus the cost, being on someone else's schedule, and how much really (swimming?) would Olivia be able to participate on a non stress level? So THE day we had to make the decision--(It was TOTALLY GOD)--as I was typing back to Dave as we were in California--my fingers started to type, about our going to Florida but on our own. We've not done that since before Olivia's life change and how much fun it would be--playing in the sand, walking the beach, relaxing. PLUS GRANDMA L could come with us. It all fits so much better. And after seeing the kids enjoying the sand (they love their sand box at home) giving them time to play together without all the bells and whistles interrupting--being together quietly or loudly, but on our terms.
It goes right along with what God has placed on my heart for this year.

Family.

The DeKolds of Indiana.

It'll be interesting to see how much hydration Olivia will require once in the "valley." She has had 1 Liter to 1.5 L extra a day. One pretty obstruction flare with pain, but after 500 ml of GREEN GREEN bile out the Gtube she seemed to bounce back--all during the night. Night healing.

So as this day starts, Olivia is beside me still sleeping, we'll pop up and begin our journey to see Grandpa Jerry. It is a peaceful slice of life there. I can't wait to see the century plant which is just a short walk down the road. I'll never forget it being in full bloom, hummingbirds attacking it, the stalks of the blooms as big as a small tree. David and Olivia both have a relative of this plant at home on our deck--the agave!

Love to all at home--thinking of you.

Saturday, August 12, 2006 2:49 PM CDT

David and Papa had a wonderful experience riding out on the Zepher--they went through ten states and Papa was telling stories of how David was asking folks the "traveling train" questions, "where are you from, where you going" kind of thing. So different from how I was as a kid--Dave too.

Olivia, Grandma and I had a nice flight out--kept her on her TPN until mid flight to Sacramento at which time I unhooked her and then a big later she vomited into the "barf bag" and venting her tubes into her bags, other than that she had a marvelous time. She was very tired, but held her own, only had one melt down concerning cleaning her glasses--GIRLS!

We girls stopped at IN and OUT Burger (those in California know exactly what I'm talking about) which I OVERate their French fries--and checked the packaging for the scripture references. John 3:16 and Revelation 3:20. Cool stuff.

On up to Tahoe which Carolyn was having her "BEST" people and Aunt Kim went to pick up the train trackers so Olivia got to hang out with Carolyn alone (with Amit--Ca's best person for that day), then spent time as two girls would...chasing and LOVING all over--

EMILY (o's fav) and PENNY kitty kittens.

Now all who are going to be here are here and we've been just enjoying hanging out, keeping it low key spending time. Taking hikes and exploring with paints. Olivia is painting bark, branches and rocks found on our morning walk this AM. David is enjoying his camera taking "timed" photos of everyone.

I MISS my Dave!
As always, when you are in the thick of the IN and OUTS of life--you forget all that maybe one does--the preparation of TPN is SUCH an enormous help and I miss Dave's help so. I can do it, not a biggie, just really have felt how much that does help out with the evening routine.

Praying that Dave is able to accomplish some big and little things while at home. His time is so preciously few at home. . .

Will be an interesting journey home with all that is going on in our world today. Fluids/TPN/lipids all being LIQUIDS, pumps, laptop...ahhhhhhhhhhhhhhhhhhhh!

But just as I stated on the TPNsupport group--I'll say it here--and I'll be the Noah--"IT (this world) ain't gonna be getting better"--we are in the end times, folks.

Tuesday, August 8, 2006 11:59 PM CDT

Mom, Olivia and I fly out EARLY WEDNESDAY--opps, that would be today!

Olivia has had GREAT days--flat, no pain, happy, enjoying having Midnight and Mortie (Dad's two) here.

Monday, August 7, 2006 7:02 PM CDT

The boy of wonders is in Iowa with Papa Virg. Both training it and having a grand time. Uncle Greggie giving us up to dates via the Amtrak website.

Art meetings over--tomorrow a quick breakfast and a stop and we are home home home--to finish packing.

The girls fly out at 7 AM from Louisville--and

So thankful to O's homecare company who ismaking a trip 3000 miles away--pretty easy.

Ready Set...

GO

To Jesus.

Monday, August 7, 2006 7:02 PM CDT

Saturday, August 5, 2006 8:03 PM CDT

Sometimes the blessings are so...hard to put into the English language.

Life is in "wow" mode.

Olivia is doing great.

David is ready for his trip to CALIFORNIA on the train with PAPA Virg.

We are all gearing up for this trip.

Olivia's body mass looks SO much better.

Dave has worked on a DVD for the DeKolds of StL ALL day.

Life is so precious.

Spend each moment wisely.

Monday, July 31, 2006 7:20 AM CDT

What a great weekend!

Dave and David went off to Resident Camp about 45 minutes away with a few others from our Pack. Archery, BB guns, Swimming, Fishing--plus some crafts--leather tooling. David had quite a time with his leather medalion. He made it then lost it, then made another because they were earning beads for each place they went. When he was getting a bead for fishing he looked down and there was his FIRST MEDALION! Good thing as the last morning he lost the 2nd (better of the two according to him) and all his beads he had earned down the latrine never to be seen again. He was completely crushed, but by the time he was home and he knew we ALL knew--he was joking around about it. David also caught some fish--but really overall just had a great time; Dave too, although it was SO HOT and HUMID--I bet they both slept like logs.

So, Olivia last night read the rest of GO DOG GO. She is so cute to hear her but this was the first time she said I'm stuck on a word rather than becoming all frustrated. She kept on reading while I was doing hookup, new pouch and overnight cath. It was wonderful!

She got bigger and bigger as the night went along and is in a bit of a dumping phase right now--with very dark urine, but with extra fluids it was a bit better yesterday and we'll do fluids all day and an early hook up as tomorrow is David's DENTAL appointment.

He is VERY concerned--I'd appreciate any prayers for this little guy.

It is that new thing which has him a bit over the edge about it.

Monday, July 31, 2006 7:20 AM CDT

Saturday, July 29, 2006 9:49 PM CDT

GOD WILL LIFT UP YOUR HEAD!

This is one of my favs right now off of Jars of Clay--Redemption Songs.

Today Dave and David were at Resident Camp; Dave called and announced David HAD indeed caught his first fish. They are having a blessed great time. So thankful.

With just we girls here Olivia, Grandma and I were not as energized, but did do some spray dying of clothes outside and fed the animals. We organized and talked and sang and played.

But tonight I went down to get the shirts we had left out on the line--and Olivia was singing--over and over--tunes--came up and Grandma was recording her singing--it was absolutely precious. Father Abraham, I am a Possibility, Be Unto Your Name, Near the Cross. . .she standing there with her purse filled with yarn balls, crochet needles, crayons and little notepads. She always has her "stuff" right there.

THE BLESSING IS...her belly is completely SOFT and FLAT.

Praise God from whom all blessings flow,
Praise Him all creatures here below,
Praise Him above ye Heavenly Hosts,
PRAISE FATHER, SON and HOLY GHOST.

TO Jesus!

Thursday, July 27, 2006 2:07 PM CDT

Sunday we had skating performances. Heart full.

Monday piano lessons and dental appointments for two children. It was O's first full fledged so had the IV abx med ball--she has great teeth, David on the other hand not so. He'll return Aug 1 for a good 1.5 hours worth of tooth work. He is working hard on his teeth, but we feel it is genetic. Bless his heart.

Tuesday was David' "birthday party" lots of pics on the sdekold mac page. We had a blast--Olivia blew up and was huge and tried to hang for as long as she could. Broken heart.

Wednesday I had eye appointment and O went with me. We had very nice moments. She gives me kisses and she totally wants me to crochet as she does. I can feel the pull to her and she to me. Heart pull.

I read on Hannah's site how now she is able to even give her Mama her kisses.

Praise GOD.

Wednesday evening David had his Papa V, Grandma L, Daddy, Mama, sister for his birthday feast. The kids and I kicked the ball outside--ate ice cream cake and headed over to Ch's lake to fish with friends.

Today phone calls singers wishing our boy wonder a happy day--indeed!

Sunday, July 23, 2006 4:00 PM CDT

Life keeps on going doesn't it?

Olivia seems to have bounced out of her no energy stage. She wears down and maybe will have a slower day after a faster pace, but she is doing relatively well.

She is eating again. Off and on--Olivia style.

Friday, Mom and the kids and I headed towards Versailles. There we hooked up with Dad and drove to his "hometown" of Peru. We met Connie, Jack, Amy and the 3 girls for dinner. Olivia ate WAY too much melted cheese on her potato skins--yuk. And alas, she had a horrible night, miserable. I do think though that the days of eating the wrong kind of foods--at least to abundance may be over. Lessons are being learned.

Saturday we were a bit "late" arriving to the CIRCUS Parade, but Aunt Linda and Uncle Bobby had a placed saved for us. It was a GREAT parade; made just for girls like O and me--lots of pretty horses:). We saw my cousin's son ride a 5 FOOT UNICYCLE! Way to go DANIEL! The kids were very impressed! We then had lunch with JackIE, Amy and the 3 girls at a neat restaurant called "The Siding"--it is old passenger train cars made into a restaurant. FUN. Olivia of course didn't eat much, but just fruit--go figure.

Then back to the park across the way from where my grandparents lived and now my aunt. It was a BEAUTIFULLY moderate day--(THANKS to JESUS!) and the kids were able to enjoy the park.

The highlight of the trip for David--would have to be when Cousin Dwayne announced there was a unicycle at the house for him. He has been practicing all day on it. What a major blessing. David says it is the BEST gift ever. :) Thank you, Dwayne.

Mom and the kids and I headed out after a park visit and decided to pop in at the "farm" where JackIE, Amy and the 3 girls were and even got to see DAVID and ANDREW--the kids got up in the combine, grain truck and saw JackIE's hens--all new photos will be put up on the mac.com site. It was a glorious trip down memory lane in Indiana. Fun stuff.

Today we are readying the house for a birthday boy week. Many aspects of the house are in better display than others. The big room is in HIGH mode of construction whereas the basement is ORGANIZED--yes, folks ORGANIZED!

We know WHO makes it all possible.
We love you all.

Monday, July 17, 2006 7:21 AM CDT

Clinic: Olivia gained weight! She was at the onset of her last admission 17.1 kg and at clinic 18.7 kg. and with a flat soft belly. No bowel sounds, but Dr. K was very pleased--we all were. She talked her head off which was the TRUE Olivia. Nurse G got to hear all the things going on at my house of which I HAD NO CLUE. GIRLS!

Our stay in Cincinnati was very dear--I guess it goes along with getting older, seeing folks you have always respected and loved and know that this earthly life is NOT forever. I want to thank all who came out to Linda S's party--what a sweet gift you gave by stopping by. I gathered much wisdom at Friday night's little dinner and at Saturday's party as well.

Friday was spent at Cincy's Union Terminal--Children's Museum and BEAVER omnimax! I don't know WHO had more fun--the kids or DAVE. It my heart SO good to see daddy-o playing and relaxing/enjoying his children. What a great man. Goofy at that:)

Olivia is feeling so great these days that it is hard to contain her level of energy. I'm starting to understand her a lot better and realize her quietness is not out of rudeness (I know I know get a grip, SHEILA), but her way of coping with pain.

I saw at the "party" how Olivia relished in the food (the more choices the better for her--any child, right?) but I know that afterwards her tummy will hurt.

We went to a mother/daughter baby shower yesterday and she had an absolute blast. I was BLOWN away with how HAPPY and FUNNY she was. My friend commented that Olivia had her "teasing" back. (YIKES) She was quoting lines from "CARS" and "CHICKEN RUN" and proud of it.

~~*~~We called PAPA PETE to sing happy birthday--IT was SO cute-- all the little girls sang--and he in true Papa Pete form--Thank you Thank you Thank you--everyone fell in LOVE! :) WE love you Grandpa!

We brought ML home to spend the night. All three children played so great and ML, O and I slept in the basement. I let ML help me run the pumps through to start and then Olivia began to recount her last admission. She said it was the worst because I could not be with her, but she really enjoyed having Auntie Rosella, and Aunt Becca there--it made her feel so big to have them there. She was talking about how Becca was reading a book after lights were out with a flashlight and how she wanted to whistle to pretend like she was the wind. (What a silly) It was so interesting--how so much came out last night--she was ready and the dam had broken and while I was trying to keep cool about it all--she really exposed a lot of her feelings.

It also gave me opportunity while O was doing SoMETHING upstairs for the UMPTEENTH time to talk with ML. I thought about --how it is hard for this little one to have a friend who will be SO vivacious at one point and so quietly shut down another day. They roll so well. We are so thankful for such great friends.

Olivia has been counting her "sisters" as of late. She and I never having had any "sisters" rejoice that God provides. Keta Jo, Lucee, ML, oh, yes, Sophia too, and if you mention another--oh Yes, they are too.

THANK YOU PAPA for taking David boy--BOY WONDER to another game. David is in the FULL throngs of BASEBALL now with REDs baseball cards. He was most distraught that HIS #1 player was traded the DAY of the game we all attended. Great games were seen for sure.

(true journal--no spelling checks)

Wednesday, July 12, 2006 7:43 AM CDT

Holding tightly!

It has been up and down for Olivia. Monday was a great day and overall she has been eating more and showing more energy. Yesterday at the movie theater the smells really knocked her off the chart. She came back strongly to finish the day after a hard down nap.

Clinic today. Praying for increased weight, protected liver and an opportunity to discuss Make A Wish.

We'll stay for three nights for Reds game--GO REDS, Museums (BEAVER IMAX) with Daddy (MAJORLY CAN'T WAIT) and a PARTY with LOVELAND DEAR (old:) FRIENDS!!!!

God has given me an increased awareness of who Olivia is--what she endures (my wearing one of her pouches for 3 days just about drove me nuts) and His help in time of trouble has helped me to be more giving to her.

But on the flip side, there is another element to this precious equation--David.

Last night we had an enormous validation talk. His being Olivia's brother and Olivia being his sister--what that means--he was mentioning how everyone always asks about Olivia but not him. This at first sounded so self centered but as we dug more deeply he really just needed to hear that he too, is most precious and asked about and thought upon and prayed over.

David's overall cheerfulness cracks any mold that I made for him. It is truly God's working in his life.

The only deaths I ever experienced as a child were that of great aunts and uncles and my dad's cousin who was 20 years when she passed. I remember how big of a deal that was to me. She was so young. Then it was grandparents--but they were "older" and expected.

I explained to David that the depths of life has been shown to him--at a YOUNG age; he has experienced amazing feats concerning his sister's care--he has seen his Mama as ER nurse to Floor nurse nightly and has become my Nursing assistant. It is about that bridge thing again. It is for a purpose--for a reason. God's purpose.

It is all about perspective. I just love how God used David last night to straighten my eternal lenses on my eyes and heart.

He can look at it as Olivia this and that--WHY does SHE have to be sick? Or. . .

Wow...This is deeper than deep and I've been chosen to be a part of God's plan. . .now let's get to it!

Sunday, July 9, 2006 8:45 PM CDT

Ah, July--9th!
My spiritual birthday; 17 years old.

Olivia continues to eat more; Friday she ate a plain burger, loving the carrot cake and nippbling on ham again. It had been a long time. Fluids are still important and lots of venting out the G, but overall; she is perky.

Today was The Bennett House. We had to cancel the last 2 visits due to Olivia not feeling up to it. None of us (not that I admitted it to them) really wanted to go--but we did. David and I played his Heart and Soul over and over to gather the folks and I started in on my list of hymns. Mr. Howard LOVES the hymns and after the kids played their piano and sang their songs I sang and played several--David and O helping out on the ones they knew.

I could hear their voices--some in their 90s singing along and didn't want to stop. They were so blessed by us; and I told one lady how much they give to us...tears. D and O saw and felt that tangible blessing of doing the stuff.

Nice to SEE the WOODS, spend time with a friend...and be quiet.

Praying for Sarah as she lost her Mama who was 87 years yesterday and blessed me with a dear phone call. Love you, sisterlady.

~~As I sang today~~I started to cry; what a blessing--17 years I've been His and He has been mine.

There is no other name as sweet. . .

JESUS!

Friday, July 7, 2006 9:29 PM CDT

It is so nice to have not just Grandma Lodgie here, but Grandpa Jerry. He drove mom here all the way from California. We had the two APPLES out all day exploring GOOGLE Earth, making plane reservations and taking pics and sending them off.

Olivia was here today. No EXTRA FLUIDS were needed. SHE ATE again tonight; we'll have to wait and see IF it stays in her, but she was a DELIGHTFUL child today--HERSELF.

I REJOICE in such a gift from GOD.

The kids and I read our history (HIS STORY) and then I closed my eyes. Olivia cleaned my feet and scratched them and rubbed them, then would alternate in scratching my back. She did this off and on for 2 hours and in between her ministry to me she would crochet. What an amazing time.

Thanking GOD for a day like today.

Wednesday, July 5, 2006 8:34 AM CDT

Clumps of time seem to rush by on the river of life.

Olivia is gaining strength, but still gives out pretty hard. She is now getting the 2L TPN and the lipids every night along with at the very least 1L of normal saline. I experimented by hooking up EARLY on TPN and switched over to fluids around 6 AM (not my best time in the day--but hoping to get the bulk of the fluids in before the day starts.

God and Country service at church was great. I have to say though, the highlight was our Pastor's message. I am still hearing it and wrapping myself around what God had to say that day.

He spoke of building bridges; he also challenged us not to think "why me' in terms of our plight, bu 'why me' being born into a nation where there is liberty.

Olivia sang the 2nd service and David in both. I was able to perform with the orchestra--STARS AND STRIPES FOREVER! My fingers remembered most of it.

We then were invited celebrate, relax and have some FUN with some friends at their lake home. There were many NEW life experiences for David and me, and even Olivia--riding on the boat and doing things as much as she was able.

Olivia is so. . .quiet when spoken to. . .I could not tell if it was because there were so many people or what.

Monday her belly was big and she was constantly leaking out the Jtube, so I talked her into taking it out. A couple of friends were there of mine and hers--and I'll tell you what; I NEVER have seen such an amazing display--the stoma was SHOOTING out Jejunum Juice 6-8 inches out; it was WILD. She had much relief, but still I'd never seen it like that for such a LONG period of time.

I'm anxious to get back to Cincinnati for clinic next week. There's talk about lipids which I still need to research, as something was brought to my attention from the Oley conference, plus, a paper which was written--and anxious to see HOW much weight she has gained. I know He is able and will--and all perfect gifts come from Him.

What a blessing the last few days have been. We all needed some time away, but yet close by--Dave had a blast yesterday too.

Now, onto July. Grandma L and Grandpa Jerry will be here within a day or two. We need to start getting serious about the house (the living room and kitchen are in need of NEW flooring!), clocking some school time, traveling to Cincinnati for a 3 night stay, clinic, Reds game, museum day, and PARTY day with mom and dad's dear OLD (precious dear) friends. Then home again to continue with house and school. . .a birthday party for a boy turning 8, and a quick trip to Peru to see my daddy's sister, AUNT LINDA.

After speaking to Darla July 3, Matthew's earthly birthdate; I think we may press about MAW. Olivia has it soldified in her head. First, she wants a pony--which Papa V is working on--dear old dad. Secondly, she would like a greenhouse/art studio. We (she and I) have talked about a "trip", but with pseudo obstruction--a trip could be just another disappointment--not feeling well, having to keep up on a schedule--something long and lasting is more practical--Olivia sees it and knows it. We are able to travel for the most part and that is not an issue. She's not attached to the Disney scene (thankfully) and if anything would want to snorkel in a coral reef or something.

I'm rambling--new day.

Building bridges.

Friday, June 30, 2006 8:46 PM CDT

How much of my childhood I took for granted. Even the summers spent planting and weeding, throwing dirt clods at my brother while he wasn't looking, the suppers after dark of fresh tomato and mayo, walking along the "lake", all of it.

After dinner the kids and I took an adventure walk. We've not walked much this summer, shoot, I feel like we've not even been home.

Olivia could barely contain her excitement; and I see that most of her energy--her new found nourishment--is starting to pay off.

We walked down a way on THE ROAD which leads to our hill. Olivia spotted spiders, and David was into the rocks. We identified the trees along the way as well. David commented it was a very good hike. We heard the evening birds and back at the yard they collected several lightening bugs.

Lightening bugs. What an amazing creation by an ever loving Creator. Olivia again was so excited as if it were her first time ever; David so willing to help and teach her. Usually at night she's spent.

Last night she had TPN, lipids and a Liter of fluids, and after that I plugged another Liter of fluids in and we see tonight she is still going.

It saddens me in a way how dependent she is right now, but so very thankful there are such ways to keep her home and chasing the bugs.

In my efforts to reel Olivia in (as her 6th year she is trying to find her footing as to who is in "charge") we opened our history book today. The first chapter talking about "His Story"--how history has an end and a beginning, but God is eternal. I love this curriculum (same which I read the 4th grade to the kids last year which ignited David especially with history), and it has a companion "coloring book/work book" which is MY ACE in the hole. O loves that stuff.

Thursday, June 29, 2006 12:20 AM CDT

Olivia and I are home! Dave and David will be here in an hour or so.

It was a bit more than a routine 48 hour wait for cultures, due to her gross distention. We see it; Dr. K (clinic Dr. K) has seen it, but when others see it--whoa...watch out, we have x-rays, and high alert. :) THANKFULLY SO! But also, it is Olivia's life, her body way of doing what it does.

But she was discharged this morning even with a distended belly, but things are moving so that is a good thing.

What a stay. I vowed to not pig out at the cafe and enjoy the rich foods I don't usually partake, only to be the sickest I've ever felt in the belly before.

Since after Olivia's last clinic and how God has been speaking to me in regards to having more compassion for her, and even a Pastor coming and sharing a Word and confirming what I've been knowing. . .I've been ever so curious as to what it must be like to. . .be Olivia.

Monday evening as we cuddled into bed watching Shrek 2 (a def hosptial movie gig), my tummy hurt. It hurt so bad I had to stop the show and lie down. When I told Olivia that I was sick, because my tummy hurt, she said, that isn't being sick! Oh my.

So, you know the drill--breathing through the waves of nausea, praying, pleading that this could NOT be so--I submitted and knew that it was serious and called Dave at 1:30 AM--2 hours away. Bless him. What an amazing husband.

Olivia was awake through my misery, only because my sweetie was hurting a lot. She was so huge and if I had been able I would have insisted we take out her tubes to release what air we could. So at one point I told her--Olivia, IF you need me, you'll have to call your nurse, because mama's sick. She had heard me vomit--as I'm sure the WHOLE pod did, so right then she rang for her nurse and said,

"My mama's tummy hurts so bad that she can't get off the bed." What a precious creature she is. I asked her if she needed a nurse--she said, yes--and then I heard O telling the nurse "how-to" vent her tube--as she was so big it was difficult for her to bend and do it!

So Dave without one inch of complaint piled David into the car dropped him at my Dad's who thankfully still had his phone on--and got to Cincy around 4:30 after having made a reservation at our fav Vernon Manor.

Whew. But next morning when I called Dave was puny, not puky, but puny. Yikes! Grandma L suggested Rosella! YES! She came and sat with O until Aunt Becca--(instant party--and 5 E will NEVER forget US again:) got there--! YES! Sponge baths, toes and fingers painted, coloring, singing and who knows what else took place--all I know that my girl was happy again!

THE HUGE PINK PONY with wings--Pegasus (how does one spell that?) from Keesha helped as well--and BOY did we have all sorts of fun with it! IT is 2 x the size of Olivia...only Keesha!

SO blessed.

So home we are--and I had to smile even wider when I read the page--all who know my brother appreciate this--of COURSE he figured out how to add bold and add links--actually I think it took all of 2 minutes while we were on the phone.

THANK YOU to all who called, prayed with me--loved on us--in the way you were able...

We KNOW your hands were HIS!

TO JESUS!

Tuesday, June 27, 2006 8:33 PM CDT

Uncle Greggie (Wednesday, June 28) Update. . . .

Grandma Lodgie relayed that all should be coming back home on Thursday.

Amen!

Uncle Greggie (Tuesday, June 27) Update. . . .

Olivia is on TPN and Lipids (stopped antibiotics at 5 PM Tuesday) -- still at Cincy Children's awaiting test results.

Sheila noted earlier LadyO's loss of weight, so having Olivia on TPN will help.

While Olivia awaits her test results, Sheila is resting and recovering from a nasty stomach bug at the Vernon Manor Hotel (She hasn't eaten in over 24 hours, which could be one possible explanation for her severe headache She now has this Tuesday evening).

We just spoke on the phone, and we joked how She needs hospital food -- broth and jello!

Sheila was going to call for room service and get some soup and crackers -- and She is eating oyster crackers now!

Daddy-O should be arriving now at Vernon Manor Hotel as well -- he needs rest after making his relief trip in the middle of last night.

Back at Cincy Children's. . . .

Many thanks for Rosella's time today with Olivia while Daddy-O caught his breath (for those who do not know, Rosella is a former colleague of Grandma Lodgie, and a dear, dear friend to all of us).

Aunt Becca has also arrived and is helping Daddy-O with Olivia.

What Blessings to have friends who help.

David -- well David is with Papa Virg at the Ripley County Ranch!

Their day was filled with outside activities -- another Blessing that David has his Papa accessible and in the country!

Prayers of Healing for Olivia and Sheila.

Prayers of Wisdom for Olivia's caregivers and doctors.

Prayers of Strength for Dave.

Prayers of Thanksgiving for friends and family helpers.

Prayers of Peace for all.

Monday, June 26, 2006 9:28 AM CDT

Sunday AM: Olivia was vomiting which IS UNcharacteristic of her in such a manner. A bit of a temperature as well, which had us in ER of CCHMC.

Thankfully, this trip has been LIGHT years better than the last two--in terms of care.

Olivia more than likely has a virus which attributes to the HIGH output.

Thursday's clinic she was 18.4 kg, last night she was 17.1--do not like that in ONE bit.

But yes, could be a lot worse.

So once again my trip with Dad (really this makes the 3rd time) is cancelled. Dave is home with David as he had taken off in hope of taking the kids to ST LOUIS.

Continued prayers for our many friends.

AND FAMILY!

Sunday, June 25, 2006 7:55 AM CDT

Olivia continues to struggle. I'm anxious to get her 2L of TPN flowing. We've been pumping lipids every night. She continues to flare. Her belly distended as well as thick drainage out the G tube, but the biggest concern was the vomiting this morning.

J-tube to vent as well so there is plenty of decompression going on, and as she sat up during her vomiting I could her internal body fluids moving.

We ask that you pray for protection on Olivia's liver from the TPN/lipids, but that it would allow her to grow and gain the much needed weight.

With VBS over with and even the dreaded pool party today was to be church and the kids and me singing at the Bennett House before heading to St Louis, but Dave took David to sing in church and Olivia went back to sleep after vomiting.

Dave and David had a grand time at the pool party; Olivia and I went back to IMAX and saw Coral Reef. Then we walked through the sci museum and toured the Frazier Arms Museum as it was free. Over to see Darla as she is hospitalized right now.

Darla mentioned Matthew's vomiting with Lipids. Olivia used to do that in the beginning--wondering if that is why she is so miserable again.

I had a phone call from a sweet friend yesterday. It was a deep talk about this journey. She too, is on a very similar walk but having been down this path much further has a depth which I feel I'm still on the surface at times.

Olivia's season requires that I sit up and pay attention. Although I do feel we are heading for the valley where shadows and darkness may abound; I know that God is leading and there will be a sweetness which none other could provide.

~~~~~~~~~~~~~~~~~~~~~~~~~~

Dave is taking D and O to St Louis.

I'll be taking time away with my daddy. Our trip in March was cancelled due to O's illness -- and really my own as well. So, we'll hop on the train EARLY Monday AM in Cincy and rail up to Chicago for 3 nights.

Friday, June 23, 2006 3:34 PM CDT

Back to lipids (little white bag/fats) every night and TPN from 1250 ml per night to 2000ml. Glad to see it all; want my little girl fed.

She is bones alive.

Had about 2lb since last clinic. Weighing in at 18.2 kg.

So thankful for Dr. K and Nurse G.

Gems.

Tonight is last night of VBS. David is disappointed/concerned that Olivia has not been able to participate like he has, but she is perfectly happy. Instead of the "POOL PARTY" (ugh) tomorrow night; she and I will go to the IMAX and check out the CORAL REEF and tour the museum a bit. Now, David is feeling like HE is missing out, but a public pool really isn't THE place we want to be right before a trip out of town.

Have enjoyed the VBS with the preschoolers; Olivia has helped one night maybe again tonight. She and Miss Lucee--dears.

Blessings to all.

Monday, June 19, 2006 7:49 AM CDT

Day 5 of chess camp was great. Olivia and I hit the IMAX theater and saw the African Safari and learned so much about the BIG FIVE. Olivia was grossly distended several days last week and Friday we snuggled at the theater and I was able to see some amazing smiles on her face thoughout the showing.

We then returned to wait for the door to open in the hallway; she laid on top of me trying to have some comfort from the distention.

Day 5 is also awards day. Each child is given a Participation award then those who have beat a teacher (wow!) which there as 3, then the Character/Sportsmanship award. David and 3 others were awarded such standing; what a blessing! David is so happy go lucky, but last night when I commented on his demeanor while driving home from my dad's David cleared it up--he said,
oh mama, I'm CHEERFUL! A cheerful son I have--where in the WORLD DID HE GET THAT-? OH, yes, that is right, it doesn't come from the world, but from the ONE who created it.

So, David was away to Papa's watching a Reds game and our grand reunion yesterday was sweet. The kids slept together and when I went in to put Olivia's J-bag back on and check her pouch they were all intertwinded--they love each other so much--THANK YOU JESUS!

AND WE actually had time as a FAMILY--the four of us, thank you, Dave. You do SO much for us; I love you so and miss you.

Last week was a hard Pseudo Obstruction kind of week. It can make me a little nutso! I offered up major affirmation to Olivia about her role in all of this. Our church has two services. The 2nd Olivia and I lead the Preschoolers in song. So, she and I went to the early service so we wouldn't miss the message. It was GREAT--about Fathers--and even about a mother...John and James' mom. The absent father and the mother who was trying to push for positional gain for her two sons.

But afterwards one of the assistant pastors came to Olivia and sat down, asking her how she feels and went on to give her an encouraging word from God. How when seeing her smiling and doing all she does despite all the challenges which are all around her--makes him during his hard times snap out of it, (he said it so much more impactful). But what was so great about it was how it was something that I had been preaching to her all week. YES!

She was more concerned about eating.

After a hard week I do see how she stiffens and almost a hardness which takes time to peel away again. I just want to stop reacting and have God's heart/eyes/hands to aid her through it more gracefully.

I stayed up way too late ordering curriculum; there was CHEAP cds of classical music which lured me into checking each out. How I long for my children to hear this music and love it. I think David has that already, but want to keep it flowing.

So, this week is VB S. 6:30-9 PM. Late nights, will be interesting to see how Olivia fares. I am leading the preschoolers in music. (What a SWEET AGE!) We'll have to pace ourselves--that is FOR sure. Thursday is clinic and I'm about to formulate the email to Dr. K.

In that vein, I find that when time has passed between clinics and Olivia is a bit off--I get a little panicy. I'm no longer dreading it, but looking forward to seeing our team and talking over my concerns however FAR fetched or clearly concise, nevertheless being with our lifeline support team.

I see the advanced artist kids Wednesday. I'll share Cheryl's comments with them about their art work and get them started on some problems for the summer; hoping in July to do plaster casting of their feet or hands. . .what a true gift they have been to me as an art teacher. God's sweet gifts, blessings.

IF you have time, there are pieces of the art show on the mac.com site. I hope to get more up at least two more pages.

Next is to display in the KY State Fair and get classes set up for next year!

ALL to JESUS!

For HE is LIFE!

Thursday, June 15, 2006 6:33 AM CDT

This is DAY 4 of CHESS CAMP for David. So far he loves it. Andrew Porter is a top notch educator and we are so blessed to have him in our community.

Olivia and I drop David in the Highlands off of Bardstown Road--one of this area's most arty fun spots; I don't even think Cincinnati has a comparable string of shops, restaurants, galleries on one road. Then again we returned to Speed Museum which is the art museum here. Tuesday we took Aberlyn and looked at the 3 or 4 rooms of art--it is such a small space and yesterday Olivia and I ventured to ART SPARKS. Art Sparks is for children, where they can dance and make images, build with all sorts of blocks, do rubbings, paint, draw, dress up, have a puppet show, etc. O loves it there. So we went as two girlfriends and I let her take the lead.

She is so creative.

Both days there was an older gentleman who was there to gather information about WHO comes to the museum and why. He was so surprised to see us again. Very sweet.

David enjoyed Chess Camp and we headed to Library to sign up for Reading Club--a summer thing and I got to talk with a very sweet mom who knew of me through HnH group. Then off to church for orchestra practice.

Stars and Stripes. Fun. But I'm finding I'm not much of a orchestral flutist any more. Praying about that.

So Olivia and I slept together last night--she slept all through the message at church. OUT LIKE A LIGHT. David went to WILD WEDNESDAY, but it is just a bit too wild for Olivia and me.

She is in a not so nice mode right now; can't tell if it is a phase or just not feeling well. By the time we were home and she in bed--she was sweet again.

Fluids and TPN last night so we shall see.

We SHALL SEE!

Thank you--for the affirmation on the email prior--now to DO IT!

Wednesday, June 14, 2006 3:49 AM CDT

Hearing David and Olivia I got up and Olivia was lying in a pool of stool; her pouch off--I can say that I truly do HATE that. They had slept in David's room so off to Daddy David went and Olivia to her own bed.

She continues to require fluids every day/night she doesn't have lipids and on the day she doesn't have lipids we run a Liter. Her urine is still dark.

Just a lot of things about Olivia's medical stuff needling me; no, I don't have numbers from Lab reports, but I do see that she can't stand 2 hours of walking around the art museum without needing a stroller.

She was very quiet during choir and afterwards the kids were drawing around the table; Olivia stayed well after all the children left, David included. It breaks my heart to see her so "different" in a way; we opted out of having company during our art museum trip tomorrow and Olivia was perfectly happy.

So, I'll stand on that; just thankful that she is so independent--not needy in that aspect.

She does have a birthday party (tea party and is to bring her doll!:) on Saturday. She is looking forward to that. She doesn't seem THAT anti-social.

Anyway, just plugging along and gearing up for clinic next week--formulating all my thoughts and concerns in an email prior would be best. That way I don't have to choke back all the concerns which come in form of fear and tear!

Monday, June 12, 2006 3:47 PM CDT

"THE" show was an absolute B*L*A*S*T!

I was able to get all the little small details finished before too many arrived; the DeWilligens came a bit early to fix any fallen pieces. After that people poured in--making new friends and just having a glorious time.

I was SO impressed that the families GOT into the spirit of it, walking around, nibbling on great eats, and KACIE (THANK YOU!) came and we played our flute duets which we've not attempted in TOO long of a time frame. It added so much--THANK YOU! Other children stopped by the keyboard to play their recital pieces--before heading out to the refreshment table again and several had fun out at the creek behind (I know my DAD and David did:) the APEX.

I was presented with a card, flowes and oh my, a gift of cash--for ME to buy MY OWN supplies; which I will do--Kathy Bloom was more than generous in her description...oh and CHERYL BARNETT coming to judge for 3.5 hours in Friday then again stopping in for the actual show; what a cool friend you are, Cheryl--again thank you; quality people are way cool.

Thanks to Pete Lyons for his gift of time and foam board, Jan Whittenburg for always opening and helping at the APEX, Aberlyn who could have had more work in if she hadn't been helping me ALL week long--sweet sacrifice. Graceland Baptist for ALLOWING us to USE the classroom; and APEX for the show...

Oh and Sweet Jesus for directing me all along this art path.

ALL TO JESUS!

(PHOTOS TO FOLLOW!)

Friday, June 9, 2006 6:32 AM CDT

Olivia's cultures came back negative after 12 hours. She looks a lot better; will have to keep an eye on her today that she doesn't over extend if outside. I think it is the OUTSIDE thing that gets her.

I know it is.

BUT today is JUNE 9th! THE DAY we will set up the art show. All week long we've had kiddos in and out of the house, painting, preparing art work, all has really given me such a great blessing. I love it. David and Olivia have enjoyed it as well.

Aberlyn, a 16 year old came yesterday and finished up hers and her brothers' works. She is amazing and can't wait to show her work--all of their work!

Elise has been a great help and support! THANK YOU ELISE SO good to have you back--now that she is Miss COLLEGE GIRL!

So meeting down at the APEX around 9 ish. Also, got the music for the GOD and COUNTRY event; STARS AND STRIPES FOREVER!!! I wasn't going to play but when I saw they are playing that I HAD to. HAD TO--I'll probably cry through it all and won't be able to play a stitch!

BLESS ALL.

In my heart I dedicate this art show to the Grace and Love of Jesus, to those HE has called home to Him earlier than we want.

Tuesday, June 6, 2006 4:52 AM CDT

We made it!

Yesterday was a great day. Olivia spent the majority of it in bed watching TV, but she started to feel much better by evening.

I shared with the kids that I had spoken with Hope and how Zachary and Allison would love to meet them. David quietly said, "I wish I could have met Natalie". He is starting to share his heart about Natalie more and more.

Dave is now a MODEL. :) He helped out with a photo shoot--we'll post the website when it is up and running.

David had a blast chasing butterflies, baby bunnies, lizards with Keta Jo and Lucee.

The older art students came over to paint in the front yard--landscape painting! A couple of others were preparing their art work for the show. Have I said how much I love teaching art.

I decided to take urine down to the local hospital lab. We have a standing order there, but it is being renovated and we had NO idea where the lab was! David wore Olivia's backpack with fluids and I carried her G and J bags so we were all attached. We had a BLAST. Nurses were double glancing at us. The techs took one look at Olivia--us--and they were bending over backwards for us. Need to get a good contact there now that they are moving.

Next to Blockbusters which I NEVER do--Dave will pick up movies from time to time, and I was such a blunder--it was fun and the salesgirl had fun right along with me--us. It made Olivia so happy and she did a good belly laugh and LOTS of drainage out G and J--letting gravity do some motility.

So thankful that the day ended the way it did; Olivia was tired, but was in very good humor spirits.

After tucking in Olivia; I went in to tuck David and we heard the oddest sound--ended up being a RACOON outside scratching Daddy's grass seed bag. Riot.

So--things are falling into place for this weekend. I submit it to Jesus.

Monday, June 5, 2006 9:08 AM CDT

Please pray for Olivia.

She is huge; I do not say this lightly.

I was so blessed to have spoken to Hope via phone last night. I slept with Olivia in my arms all night in hopes of keeping her elevated a bit. Her belly was so tight. When I touched her I thought it was a bone, but alas, it was her abdomen.

We'll run fluids all day until TPN's turn.

Today is a big day with two friends coming and older artists coming to work on their canvas painting.

David had a temp yesterday and was so concerned. He walked in this morning and said, "I'm HEALED!"

Aunt Becca has surgery Wednesday and the doctor will not know what to expect until she is "in there"--so we are praying and concerned on that front.

This week is the art show--Saturday--it is the big gig for me and with all that is going on--brewing so to speak--

Turning it ALL over.

Friday, June 2, 2006 7:33 AM CDT

A storm is outside the early morning thundery kind, but here inside the storm within seems to have settled.

Praise GOD--HE hears and ANSWERS prayer.

Wednesday, May 31, 2006 11:40 PM CDT

Upon waking to the BEEP BEEP of Olivia's pump; I was trying within my dream to find my way back to the parade formation and my piccolo. It was such a great dream; life as a young adult marching in the band.

And there I stumbled and realized that I was now responsible and a mom to TWO incredible people who look to me on almost every accord. I've never been much on integrity as a young person. Maybe a bit warped morally as well, but God does work miracles. And did open heart surgery on this girl 16 years ago in preparation for these moments--NOW!

It IS a flood--that reality wave which strikes when you least expect or more like--DO NOT want it which can throw me to my knees. Fluids, TPN and Lipids running tonight. It is hot and the heat will take away Olivia's day.

But this is but a moment in time; it isn't the whole day in a capsule but just this time in space--recounting that carefree dream.

Olivia had a weird place under her Jtube. The disk looked like it was a frisbee taking a turn--not flat. So, I check it out and immediately she and I go into this mini battle of which I AM the enemy. Maybe I'm too clinical? Curious? Hey, I just want to see--I wanna KNOW what IS doing this. So I take out the water, and although she chants how she hates it (my taking out the water--tube?) and then a flood of jejunum juice erupts out the hole in my daughter's abdomen. Olivia continues to chant her hate list but is quiet and is touching this special place on her body. It was the first time she ever did that.

I'm either getting old, tired, or something. . .I am trying to find the strength to make a new day new. Maybe that is the problem--it is not my job, it has already been done, in Jesus Christ.

I'm all right. It is all good.

There was WET Wednesday tonight; we opted to stay home. Olivia would not have made it at all, and well, although David thrives off of anything--he had his own sprinkler action here at home.

It was precious. Then he planted his tomato plants which he bought with his own money today. Watered Olivia's plants as well--both of their gardens are absolutely them. David is now starting on a veggie garden.

I guess the other miracle is even when I feel so disenchanted--the kids are still so vibrant in their sparklie ways.

God preserve their hearts--build a hedge of YOUR love, grace and mercy.

Protect Olivia's body from Pseudo Obstruction--keep her safe from its terrible ways.

God please give me a new way to see Your plan==order my steps and open that heart You so tenderly fixed to You 16 years ago. . .

~~~~~~~~~~~~~~~~~~~~~
Prayers for Hannah.
www.caringbridge.org/wv/hannahelise

As Shelle asked for Trust--Trust. . .
Faith.

Lord, please.

Wednesday, May 31, 2006 9:39 AM CDT

MAY 31?! WOW

It has been a whirlwind as of late.

We are all still adjusting to being home, the heat and just well, life.

We had a quick trip to Versailles to see Papa. We also attended a Memorial service on Monday.

Dave is working on the house; we are about to start painting.

The art show is June 10 at Graceland's Apex if you are local I'd love to see you there. I'm so pleased with what we accomplished this year in art class.

Thursday, May 25, 2006 10:28 PM CDT

Things seem to have settled a bit. Then again, we've been home. I love to travel, but we so need some major home time to re-establish LIFE here.

Olivia had some hard days with her ability to empty her pouch, but she's starting to regain the fact SHE has to do it.

David is in a very sweet mode. Like honey to the bees.

Monday, May 22, 2006 8:19 PM CDT

We are ALL home. Papa dropped off David and we heard snippets from their trip to West Virginia's Cass. Trains, mountains, observatories, all sorts of things. I'm going to have David journal this.

Olivia had a great time in St Louis seeing the DeKolds.

I'm just beat up; life's lifey ways caught up with me but God is so faithfully sweet, full of mercy and grace.

Thank you for all the kind comments.

Romans 8.

Thank you, Keesha for hearing me; listening to me--and being right here and there.

To JESUS!

Thursday, May 18, 2006 11:15 PM CDT

She is a skinny girl.

To me, it seems, she is but bones and beauty.

Obstructing fully, her belly rounded--encased as the abdomen of a spider with legs and arms.

Her brown eyes large speaking words her mouth cannot say outloud?

So much air and fluids rumbling inside her body's plumbing. It is almost too much.

It is this edge which has me on my knees--tears racing and thoughts in a fury.

And yet, (although great friends you've never put it to me in such, but only my thinking how can I?) she is here; alive, breathing, the pumps sustaining her nutritional needs--it's is this edge which brings me to God.

Our help and hope comes only from Him.

Thursday, May 18, 2006 3:22 AM CDT

David boy is off with Papa today. They'll be heading to CASS in WV for steam engines galore. This is the kick off really of our summer and the exciting things in store. I'll be making a quick run over to St Louis with Olivia to see St Louis family. I'm looking forward to Olivia time and seeing everyone there.

I was a lazy sloth Wednesday. I drank NO coffee allowing my body to rest after such a big weekend of NEEDING to be pumped up.

So, I fell asleep early and here it is almost 4:30 AM.

Hoping that next week we'll have a visit from our IDAHO friends which will get us to the end of May.

June will comprise of the art show, chess camp, VBS and the last and final week--a Chicago trip with my Dad! It also will mean back into "school" for the kids.

Both David and Olivia are required to read each day (ooops, Olivia! She had David read to her!), and during the summer we'll continue with reading, but also writing, and adding math in there as well. We'll be reading on into the 1st grade history having completed the K level--which I learned a LOT. I had found a 4th grade level American history book and was reading it to the kids. I had no idea it was a curriculum, etc. so I went back and ordered K-3 grades and we are reading through them as they are "readers" with questions.

Piano, Spanish, choir, and church will be the outside stuff along with family and friends visits and treks.

With MY (ahem) new APPLE macpro book (THANK YOU BROTHER!), Dave (ahem) has found out how to make movies, and all sorts of other things. Mom does this a lot as well, but I've not had time to explore and anxious to when the time is RIGHT. Anyway, while viewing a video clip Davd had uncovered from last July--I was STUNNED as to how Olivia had lost her BABYFACE look.

Gulp. David has lost his for some time now and really, his change was so gradual that I can still see that part of him, but for Olivia JUST like in true Olivia fashion she has her young girl look. This child never has stayed long in her various stages. So quickly arriving.

Just as she now takes out her overnight cath, unplugs her pumps, gathers the pumps and TPN and lipid bags and gets up and out of bed--she also will unhook her G and J bags from the tubes. She also empties her out pouch, WHEN reminded will empty her overnight urine bag and G bag if needed--gathers the supplies for the over night cath--make her own sandwiches as I can't keep up with what is in VOGUE for her eating pleasure. And now that she is wearing a little under shirt thing she can get out of bed and dress herself as there is no unpinning (she does the G and J tubes, but I don't allow her to do CVL YET).

She IS distended and was a bit miserable yesterday and last night. I'm lying next to her typing; she rolled over and there was MAJOR plumbing sounds (fluids moving through her bowels from gravity)--praying for a SOFT belly day.

O*L*I*V*I*A!

JESUS REIGNS

Tuesday, May 16, 2006 9:02 PM CDT

This week (weekend)--has been action packed.

Not sure when I last journaled and even not sure how much longer I'll keep up this caringbridge site for our day to day life as I'm thinking of starting a blog on our homeschooling life. I will of course keep cb site for what it is intended; keeping friends and family up on Olivia's medical life. So many days so much happens within that realm which I never mention as it is so much a part of our rhythm--her not eating or eating bizarre combinations. Her vomiting in the night, or distention, the pain she feels, her lack of energy after full days, her thin body, tubes, catheter, ostomy, all of it.

There is so much more to Olivia than all of the above and yet, here I feel almost wrong in sharing our lives as we live it.

But until I can get enough time together to set up a site; here I will continue to share how our days play out--medical, educational, spiritual, emotional, physical, all which make us who we are.

Saturday was the kids' recital. Mrs. Robin in TRUE Mrs. ROBIN fashion made it all very special, relaxed and FUN. Olivia was precious. David played his solo so well; I'm still in awe as to how he has progressed and our duet came off great. The other players had me in tears as well--so much passion in their hands to the keys.

Off to Indy after a dinner. . .

The hotel was downtown and BEAUTIFUL with 20 floors and an elevator which delighted ALL children! We saw Cousin Nancy GRADUATE with her MASTERS in Social Work; Olivia slept through most of the ceremony while David crossed off the names as they were called. We are SO proud of you, Nancy! So thankful there are folks like YOU out there!

Olivia claims Nancy is THE most beautiful girl in the world. She loves her smile. :)

The next day we went to the Children's museum with Aunt Midgie and Nancy. Indy's Children's Museum is a must.

It was just Mom and I with the kids today at the zoo. It was touch and go in the beginning with all too many kids, but the dolphin show, the zoologist who was filming the 3 rhinos and the elephant show we saw was full of great information. We were up close and personal with the African lions, kangaroos and joey, giraffe, ponies, hog, chickens (oh, they wanted to stay there for a while!), baboons, . . .

It was a VERY full weekend--thank you Aunt Midgie (O's name for her), Uncle Jim, Joey, Nancy--and it was great to see the Bakles and Uncle Paul and Miss Joann(e). Wonderfully sweet.

Indy is a great downtown experience; I enjoyed walking the Monument Circle on Mother's Day while the kids played with Aunt Midgie, Ryan and Robbie. We saw Indiana's capitol building as well.

I reflected on how my life changed the moment David made me a mother. How other mothers may be feeling having lost a child--or expecting a child--or concerned for their child.

When I reminded David that he being the older "made" me a mother; he said, yes, but it was Olivia who made you super mama.

All for Jesus.

Friday, May 12, 2006 0:22 AM CDT

We are here.

Olivia has enjoyed her dear Grandma time.

We are gearing up for recital on Saturday; all of us practiced as the library.

David's solo piece is in the fumble fingers stage; his teacher and I agree--2 weeks ago and he'd been prime. I'm just so pleased he can play it! It is hard! Our duet was great; I'm very excited to play with my son. THE KNIGHT MEETS THE DRAGON---ohhhh!

Olivia fell right before we went in and she was shut down. The first page on her piece didn't make sense (and this she's had mastered for some time), but alas, I have things in perspective--again--I'm so excited as to HOW far she's come. It amazes me.

Robin is THE best piano teacher EVER.

Grandma, D, O and I will head to INDY for a few nights. My cousin Nancy is graduating--so PROUD of her. We'll get to see LOTS of family. Can't wait.

Please remember Nancy's sister, Mindy-- in your prayers.

Bless you!

Monday, May 8, 2006 10:48 AM CDT

www.caringbridge.org/ma/natalie

Our prayers are with the Eacrett family.

The sun is shining and the wind blowing. The hamsters' cages cleaned and hens and bunny have food.

It is hard to get life going when you know people you love and care for are hurting in such a way. Just so strange to be so connected and yet so darned far away.

Grandma is visiting friends in Cincinnati for a few days.

Our piano is being tuned.

David and Olivia are enjoying the sweet sunshine of Spring--with their pretend cities and their bikes as buses.

And I sit here listening to the tuner pound away at the old piano--making it better by the second.

Thank you for all the kind messages.

Monday, May 1, 2006 8:20 PM CDT

Please pray for Natalie and her family.

Sunday, April 30, 2006 7:08 AM CDT

Counting blessings.

Looks like Olivia's line repair is holding up. Wisdom from a friend off of TPNsupport enlightened me a bit more. Her daughter has been in patient for some time now.

Olivia's homecare conference was HERE in Louisville. Looking back to our first and then this one--how we have grown; all of us. Some new doctors, of course I presented Olivia to them, but for the most part I get lost within the medical terminology. This year's presentations had GREAT visuals--some a bit graphic, interesting stuff.

David enjoyed hanging with the his friends and Olivia made TWO new GIRL friends. GOD KNEW EXACTLY WHAT _SHE_ needed.

One of the little girls is a bit older than David and has Pseudo Obstruction as well. She and Olivia hit it off.

We got to meet a couple of folks from our TPNsupport group.

Last night we went bowling; it was loud, but once I got over that and just enjoyed it--the KIDS had a blast.

Today we hope that a few friends will join us at church before heading home or on their next destination. What a neat honor.

Praying for our friends.

Friday, April 28, 2006 3:09 PM CDT

The 2nd repair seems to have been successful.

I'm pretty beside myself with the fiasco at large.

Trying to cool down before I say much at all.

I do have to say that Thursday was such a blessed day. David and Olivia had a BLAST together, good school, outside play, just being so kind and loving to each other. THEN...this.

Tonight is the NS conference welcome dinner. Will be nice to hang there for a bit before coming home and getting some sleep.

All day tomorrow will be sessions, with a slant on PED pseudo obstruction and mito disease. Sometimes, I'd rather hear about other stuff than our own. And Mito has become so close to home...(no, Olivia is not diagnosed, but we have many we love who are on the FIRING LINE with such a disorder).

Thank you for your prayers. I don't say that enough. As I drove UP--I spent alone time with God, really grasping that He was right there--as close as...

And on the way home drinking Coke (YUK--I've been on my health kick a bit--and am BUMMED about that)--to stay awake--and heard some absolutely AMAZING Christian testimonials on the radio--O and I both. And even though I'm a bit heated about the FIASCO--God brought goodness from it, shedding His Light on my walk as Mama to David and Olivia through the Focus on Family classic show. Powerful.

Yes LORD!

Thursday, April 27, 2006 9:25 PM CDT

A Daddy-O HiJacked Journal

Thursday nite 10:00p.m.:
Sheila and Olivia are enroute to Cincy Childrens. Liv�s central line has a pinhole leak. This should not be serious; it looked repairable (not unlike a pinhole that we have had before). Soooo�..

We�ll ask for prayers for their safe return tonight and for everything to be a simple, quick repair deal.

We�ll post tomorrow morning after every thing has played out, and hopefully they�ll be safe at home sleeping.

Thank you to all our friends that read and care about my daughter and my family. May God bless you all and return your prayers and love tenfold back upon you.

Daddy-O
Dave

Thursday, April 27, 2006 1:20 AM CDT

Ah, well--It is Thursday isn't it? And at a time when only the trains and the night birds sing.

Home today--this Thursday-day.

Last night was AWANA Awards. Olivia was DECKED out with NO tummy hurts. David looked so handsome.

We are up to David being annointed by Samuel in our Old Testament reading. Saul's disobedience.

The great reminder that God looks upon our heart--not upon our appearance.

My life to You, I give.

Tuesday, April 25, 2006 6:36 AM CDT

Olivia's party was a hit. It wasn't what we did, but the folks who were here.

We were blessed to attend "THUNDER OVER LOUISVILLE" at a downtown location with such gracious hosting and dear friends along with new ones. Grandma and Olivia stayed home and enjoyed relaxing.

Olivia wanted to go to church with me. It is so neat to see her there beside me with her Bible on her lap; she, such a young little lady.

David's BLUE AND GOLD BANQUET in the afternoon had us HOPPING to get things ready and in order. Dave was the INDIAN CHIEF who passed the TIGER CUBS onto WOLF CUB! FUN!

Monday dear Aunt "MIDGIE" (as O has been calling her) orchestrated operation LAUNDRY. We've been going through EVERY stitch of clothing--HOW GREAT!

So, today we are back into school, piano lessons and worship choir later.

As a friend ended an email to me recently:

So THANKFUL for TODAY!

Sunday, April 23, 2006 0:06 AM CDT

Precious birthday party.

So much to tell, but mainly--Nurse Gerry's words rang in my heart and head--"not all kids even eat their birthday cakes", Olivia was not up for that at the moment, but did try.

But as always, God moves His people at the right time and Uncle Greg called just as we were about to sing Happy Birthday--and there, it all came tumbling--tears that is, thankfully all the children knew "me" well enough to know--it was a mixture of sweet and salty saline tears.

((LOVE YOU GREG!))

Everything feels so raw and open; Olivia back to being quiet, she went back during her party to vomit. She kept a good cover--

Her homecare conference canNOT come too fast.

Wednesday, April 19, 2006 10:53 PM CDT

Happy ALMOST birthday, Olivia!

You will be 6 years old.

April 20, 2000--you were born on a Thursday! I will never forget that day. Dreaming of fried chicken and talking to Grandma Lodgie who was still in California. And then you started to tell the world you were ready. Calling Daddy, then Sarah to get her in on it.

You came so easily into this world. 8lb 10oz worth of precious baby girl.

And now, there is no doubt that you are a beautiful girl. No bow needed.

I know you've been looking forward to tomorrow, not for presents, but for another year--6 to be counted.

~<><~<><~<><~<><~<><~<><~<><~<><~<><~<><~<><~<><~<><~
Tonight Pastor Ken asked who would like to hold the Bible while they pledged. O raised her hand and for the first time this year didn't have a Bible, he graciously allowed her anyway by borrowing a PINK one from a friend. There she stood on the stage with her arms held OVER her head (something of a rarity) and her shirt up and pouch and tubes exposed.

Meanwhile Grandma is home baking one of her first layered cakes--we always got the PAN cake as kids--and believe it or not--I have survived! It is a beautiful white cake which I'm sure Olivia add some color to tomorrow.

Papa is due to arrive and he'll either accompany David to a "scout's" birthday party--while Grandma, O and Mama go just a block away to paint pottery. Olivia will be sleeping in the basement with Papa.

But all this doesn't happen until after breakfast out and piano lessons.

()*()()()*()()()*()()()*()
Friday art for upper elementary and advanced students--preparations for April 22.

Olivia's birthday party--her 4 year anniversary of G-tube, J-tube, being on TPN, needing to be cathed, and her ileostomy. She had her central line placed later in June--day after Father's Day.

I can't mention April 22 as only Olivia's as it is the day God called Matthew to perfect healing--no more pain, no more ports, no more medication, no more sickness--no more hospital beds!

Matthew Lindenmayer!

~<><~<><~<><~<><~<><~

God is SO good to us.

He has been throwing blessings at us left and right.

Thank you.

Monday, April 17, 2006 11:06 PM CDT

Easter.

What a remarkable service we had. Olivia didn't move an inch the entire time.

Olivia is different. I have mentioned it before but it is more and more apparent and I feel more and more helpless. Maybe, when Grandma gets here, or maybe at the NS conference or maybe her birthday or maybe this or that--she's quiet and not feeling the greatest in the days.

Saturday, April 15, 2006 10:45 PM CDT

Sometimes I feel like such a...overreactive weirdo.

Artist eyes.

While at the Cincinnati Art Museum we viewed and examined rather closely a sculpture of Eve. She was rather plump--my kind of gal. Olivia is anything BUT plump. I miss those days of TPN cheeks and chub girlee. She is a little lady now yet sometimes seems so tiny--boney? I love you, Olivia.

Last night I met up with a friend and her girls at a coffee house--her daughter's (8 yr) guitar teacher was performing Jesus music. I had her "Livi" (almost 3) on my lap. Just a sweet and sour chunk.

This little chunk's mom said something very profound--yet so simple to me.

A friend having made a WONDERFUL dinner--Mrs. A.--makes THE BEST REFRIED BEANS--EVER. It is hard when one does something for you--isn't that strange?

"GOD DOES NOT HAVE PHYSICAL HANDS.

He is using these people to EASE--HELP you."

_______________________________________________________

A week ago I called my Dad in tears. How I missed my brother Greg. I feel so utterly honored to know my brother--that GOD...in HIS most incredible WISDOM--would set me up with THIS (kind of) brother. . .another example of LONG term...LOVE from Above.

He LIVING in California and I here.

So far.

Friday, art day--the doorbell--I checking and seeing it was. . .FED EX (oh dear--THE enemy!:)--

And so, I pull in a slender shipping box, from California...

Hmmmm...is it from Nutrishare?

No, it is addressed to ME!

ME?

The kids and I open the box.

WE find another BOX.

And neatly inside is

an

Apple COMPUTER!

HUH?

DAVE?

(call him)

NO!

Call my brother who is APPLE. (in my eyes)

Yes.

God's Hands again...

More.

to follow.

May you KNOW who Jesus _is_.

Friday, April 14, 2006 0:57 AM CDT

THREE CHEERS for Nurse GERRY!

What a great picture of compassion and care.

No changes except for Flagyl dosage as Miss Olivia has OUTgrown her dosage.

David and Olivia each had a camera and they took photos and I did too of our trip to Cincy.

It was glorious--only THE FATHER in HEAVEN could have made it all possible. IT was just what we ALL needed.

Art museum, Krohn Conservatory, driving around downtown to see Plum Street Temple, City Hall...and staying at the Vernon Manor. The kids were plain JOYOUS. David was such a helper. Olivia was in a HUGE flare--huge belly but we pressed on and had fun playing a few new games--Birds and State JINGO. We learned new facts about birds.

Tomorrow art with the olders--then HOME.

Easter.

Monday, April 10, 2006 10:22 PM CDT

OK, I canNOT say enough about Casting Crowns--Lifesong CD. Each song could be an anthem for the 140 Lee Dr club.

~ ! ~ ! ~ ! ~ ! ~ ! ~

Finding that I start almost every sentence with "I think"--my confidence was shattered a few weeks ago and now the footing seems so slippery.

Something which always came so natural--teaching--and to have one not so good experience break the flow. I see it as it is--an attack. Dave and I both having parallel moments over the last month makes me want to laugh that crazy laugh and spit at the enemy. We know WHO "it" is.

No qualms from this side over snack; Olivia pouting over the fact she was stuck at yet another Scout meeting and NO snack to boot. The Tigers headed out on their hike after their sketching the cardinal bird--the model a 3-D model my Daddy's Mama painted and probably shared with her own students.

And just as He always does--the Great Provider--I hear Mrs. Whittenburg's voice. God's love walking on earth.

And there she told me we could have the food being offered to one of the groups--SNACKS--even Olivia smiled over that.

And later--we caught each other again--and I was so overwhelmed by the change in Olivia. How she isn't "herself"--little smiles--(its me)--Isn't it always the mother?

Olivia talks a lot about my dying; places she would keep my picture, and she has her "book" out--surgery book. She wants to tell her story.

Praying how to help her--join me?

Sunday, April 9, 2006 10:43 PM CDT

I know--I know.

But sometimes it does feel as if I can't catch my breath--my heart is so swollen.

Please keep Heidi Coleman www.caringbridge.org/ma/heather
in your prayers. She is ^Heather's^ mama.

Friday, April 7, 2006 9:18 PM CDT

Our sweet friend, Jordan--he needs our prayers. He has been so sick for too long. ((JORDIE))((MISS DONNA))

And all our other dear dear sweet friends...((Kyle, Natalie, Sean, Zachary, Samuel))

((Ben))

Press on--

Friday, April 7, 2006 5:22 PM CDT

Thursday, April 6, 2006 10:11 PM CDT

Rain came today.

Heaviness prevails.

Months ago a woman on the homeschooling email loop put out an plea for prayer for her son. We shared a few emails. Then, when Olivia was in the hospital--Robin, her piano teacher put out a prayer request for us. So, Tammy and I reconnected.

Sharing the common parts of a walk with a chronic hurting medical kid.

So today we visited.

I could not help but think of Matthew. Along with Olivia's birthdate comes Matthew's deathdate of this eart--two days later--which is also Olivia's anniversary of tubes and ileostomy! I remember the first time I visited him at his house--how much he taught me in the short few months! How scared I was of him! How much he had to share! And how lonely these kids can be. What a need. How much could be done.

David and Olivia worked on paper school as I got to know Tammy--and when I saw that Ben was up to a visit--I cut off some pages and let David go and play Mario (WHAT A TREAT!)

I am reminded of so many of our friends--who cannot get out and around--praying that people will be sent to them.

~~ ~~ ~~ ~~ ~~ ~~ ~~ ~~ ~~ ~~

((Sean)) ((Zach)) ((Natalie)) ((Kyle)) ((Samuel))

((Mamas, Daddies, Sisters and Brothers))

May God hold you tightly.

Tuesday, April 4, 2006 9:34 AM CDT

Lincoln Luncheon on Sunday was a true experience--even for this old girl who never has been very political. Sodrel's speech was worth it all.

David and Olivia sang the Sodrel campaign song--

From Indiana's heartland
farm to riverside
We defend our flag for freedom
We salute America's pride!

We are for Mike Sodrel
a leader we can trust!

Mike Sodrel for CONGRESS
he's gettin' things done for us!

Lots of rain on the way and many games of Flea Circus (thank you HEIDI and gang) it is STILL a family favorite.

David, in true Uncle Greg form, watched the opening game of the Reds on TV yesterday; he worked fast and hard so he could. With glove in hand and standing before the set he rooted the Reds, but Cubs won! President Bush threw out the ball (which we missed due to finishing up READING about THE FIRST PRESIDENT!).

Olivia helped so much at Scouts last night. David had a blast. The theme is "feathered friends" and so I "winged" a talk about birds; it was a lot of fun. They made bird houses and took home a bird feeder to make.

Olivia awoke the house at 3:30 with a hurting tummy--vented her and she was HUGE. But she sounds fine this morning.

Off to piano--my favorite day is Tuesday. Piano day.

Saturday, April 1, 2006 10:26 PM CST

Two in one day; I guess there are some days you just want to wrap into a paragraph since there were not photographs taken.

Patchie was calling to us to let her out again today. The sun shone as Olivia and I headed to Madison to meet Papa and David for lunch. Olivia claims, and I do tend to agree that Thursday (was that the most sunniest and warmest of Spring days?) was the hens' most favorite day of the world. They were out for hours and Olivia experienced the pleasure of giving to "others" in such a way.

Dad announced when we got back to his house he needed to lie down; the weather had turned to a dim grey and the kids were quietly playing and so the two of us laid on his bed--listening to the REDS play their last Spring game--dozing.

WLWT--radio, Cincinnati.

I thought how Dad would drive to a pass when we lived outside of Helena just so he could hear his Reds. Hearing Marty's voice, the joy that game has given my Dad over the years. Oh sigh.

We walked then back to the pond. Dad busy as the beaver is as if one is to keep up with a beaver one must be VERY busy. That creature is just remarkable. Olivia and I took off into the woods to plant her walnut; David caught up and scouted us out into the dead corn field and around to the corner of the woods we have named "Songbird Corner". David and I showed Olivia all the Beaver's handiwork and we examined and determined what was new teeth cuts.

A good friend lost the last of her "older" family. Her brother only remains. He was 94 years old. I began to explain this to David and Olivia on the way home. It would be as if Aunts Linda, Vangie, Midge, not to mention great Aunt Dorothy, and all the Uncles and my parents were gone. . .gasp. Takes it away from me. Then we related it to them; their grandparents, aunties and uncles great and otherwise. We all agreed that another trip to Papa's next Friday after art (especially IF it is to be nice) is in order. And soon we shall head to St Louis to be with Grandparents and Aunties and Uncles.

Shower baths and reading of stories and prayer...off to the Land of Nod they both slipped.

Saturday, April 1, 2006 7:30 AM CST

April!

Today Olivia and I will run up to Madison, have lunch with Papa and David and head out to Papa's house--POND--checking out the Beaver's work.

Olivia is doing so much better and had a great day yesterday. Dave and I took her out to eat then home where we puttered, but we played lots of Flea Circus and Dave played many games of Sorry with her as I had my "hair done".

Sunday we have a Lincoln Luncheon--more on that! And MONDAY WE START BACK TO SCHOOL!

Can't wait.

Will try to take many pictures while at Papa's.

Thursday, March 30, 2006 1:08 AM CST

Olivia left the house today. Granted she fell asleep to their destination; she and Daddy had a brief date while I shopped.

With David gone and pretty much the world being on "spring break"--and DADDY-O home; I'm all for SPRING BREAK. It has been very low key--we needed low key. Not much being accomplished--I guess part of the coaster ride.

Olivia was UNHOOKED today when her TPN was over--had a shower bath--and I trimmed her hair. It looks SO much better! She was OFF of fluids ALL day and her urine looked and she looked all right.

Everytime something big happens--like she gets sick or has a hospital stay I get such an insightful push in the right direction. Family priorities--you find out who are in your corner in the thick and thin in their own capacity; its a very enlightening cool experience especially once you are through it.

Since Olivia hasn't been able to see her friend they have been speaking on the phone. It has been really special and I am so thankful that her Mama is allowing it; not all 6 year olds are allowed to converse at such length with a friend. They count, they play Simon Says, they giggle and chatter on and on; ML is quite the story teller as the last time she spent the night we three girls slept in the big bed and had HER telling stories; they were amazing tales!

I caught David and Papa out at the pond undoing what the beaver had done just over night. INCREDIBLE! They were in true boy form all excited about their endeavor; it reminds me so much of Greg, Dad and me back in Morrow. How I loved playing at the "lake" as we called it. Then next they were in Versailles at the corner McDs. Later David was beating Papa in a game of Monopoly. THE LIFE OF PAPA--RILEY!

God's mercies are new every morning!

Tuesday, March 28, 2006 7:05 PM CST

Took David up to Papa's today. We met in Madison, ate, shopped and headed to Versailles.

I know I needed some outside/fresh air/no-low stress kind of day.

David, Papa and I took a walk back to the pond and discovered the beaver (3rd on this pond since Papa living here) dammed the pond so well it was FULL!

We did take a hike and found many trees which have been taken down by the beaver. I find them to be such interesting creatures.

Olivia has perked up a bit! Her belly is HUGE and her output is A LOT, but we are keeping up on it and she looks SO much better, not 100% at all, but still is on the upmend.

She got out of bed today and played Polly Pockets and painted.

I spoke to Nurse G yesterday and today received an email--it is official--Olivia DOES NOT NEED A LINE REPLACEMENT.

That really helped Olivia's demeanor.

Saturday, March 25, 2006 6:52 AM CST

Monday night:

Olivia had a slight temp last night and again today. Her little body is fighting this virus. She has to be on IV fluids 24 hours a day to keep up with the amount coming out of her. Not out of bed today, but then again, I remember David and I didn't want to get out either. She did do some school.

Nurse G and I spoke; we are waiting to hear about the central line.

Dave feels achey; Papa is gone and David is roaming around--not 100ut ready to be enagaged. I'm thinking of taking him to Papa's this week which will enable me to work on the house without feeling like I'm pushing him aside and he and Papa can do their "thing".

~~~*~~~*~~~*~~~*~~~*~~~

Olivia is home. We were discharged yesterday afternoon. It was a strange stay.

We did get an Xray of Olivia's chest to check the location of the tip of her central line catheter. It is no longer in a "central" position and will need to be replaced.

Olivia has many questions and concerns and I'm hoping I can call surgery tomorrow--get a date and some answers which will put her heart and mind to rest. Well, all of ours.

Papa is here. David is eating, both D and O practiced piano and we are keeping Olivia on fluids 24/7 to maintain a hydration balance. She seems to have slowed down on the "dumping". WE ARE LOVING the NEW "big daddy" pouch!

Aunt Becca brought over a huge WONDERFUL fresh meal. We will be able to feed on that for a few days. THANK YOU! Fresh is key.

Dave (journal guy!--whoa!) is off this week as Papa and I were going to take a train trip to Chicago, but that will happen at a later date. It really is all good. We'll go when it'll be warmer. I'm just so THANKFUL to be with Dad--having him here--seems like a special kind of glue--that helps put us all back together.

So after about a 10 day of wild sick rides from all of us (EXCEPT DAVE!); it'll be a slow uphill journey to get back into our norm swing.
Hamsters==not GUINEA PIGS--hamsters--and ONE IS MIA.
Piano, reading, writing--if we can accomplish that this week; I'll be a happy teachermama. We are really having to play some catch up.

Not to even begin mentioning the house...
nor the emotional little hearts--with big thoughts and feelings. ((Thank you Hope--what amazing insight you shared the other night--do you know how much I treasure that in you?--Please keep Natalie in the forefront of your prayers))

Dave's message was so incredible--transparent--and so thank you to friends--old and new who have really been there to hold us up.

Thanks to God. To Him we give it all--for in our weaknesses HE is strong--we can do nothing without Him and do all things through Him which strengthens us.

Life is so life.
Pressin' on!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Wow, it has been a long long time since I have journaled.
Olivia is doing better. This fever appears to be just that CRUD that has been going around (flu?). They are saying it is viral as her blood, stool, and urine cultures are all coming back negative. (Nothing bacterial for those of you who are non-medical) so it pretty much has to run its course. Thursday night she did a huge dumping which impressed the Dr.�s, it will also result in extending the stay for an extra day possibly. All in all, it was just her version of diarrhea �pretty spectacular non-the-less.

The plan when I left last night was to finish the antibiotic regimen (Vanc and Gent) which was going to be a two day deal starting Wednesday/Thursday night at midnight, (it should have finished last night late) and to continue to push replacement fluids. With any luck she will be coming home today, or more likely tomorrow, although once you are caught in the hospital�s time warp, it seems a �still in on Saturday� always results in �still in through Sunday�. Like Hotel California, they are programmed to receive, and discharge on a Sunday is even slower for the lack of personnel.

I want my family back together where they belong: at HOME.
---------------*******---------------
Friday morning a baby two rooms away was called home to heaven. It was tragic. I don�t know what happened but we were awakened to the alarms and many people working on the child but to no avail. I pray that Olivia�s needs that night (or my own need to sleep) did not contribute to it. My heart felt prayers go to that family and to the nurse who took the loss personally.
--------------********----------------
I was reminded once again of the fence that separates our �chronic child� life with �normal� life. We have now had a 4 day hospital stay for basically the flu. In a way I am concerned/embarrassed by that; if work were to find out I was awol because my kid got the flu how would they react? Do our friends at church understand how we cannot accept commitments which are long term; those where people (or children) depend on us to be there every week? Our life is dominated by Olivia�s condition and care. The central line raises the stakes to the Big Leagues. I accepted long ago that it would create a totally different set of priorities and lifestyle for me. I remember daily what is important in the life that God has given to me. While we see each other through the fence, we are separated by the differences. My deepest thanks for those who continue to reach through the fence and understand that we will disappoint them constantly, not for lack of love, effort, or concern but simply because our life on this side requires it. Know that you will never understand it and that you are blessed for not having to. (This may sound harsh but�my thought to those who really really want to try: tonight go to bed at 10 pm. Set your alarm clock to wake yourself up every two hours. Get up at 5:30 a.m. Repeat the following night. Then when you get up, do something life critical which requires that you be on your �A Game�-like drive your car with your kids in it. Take how you feel physically and imagine it for a week, then for a month.) Sleep is heaven.
---------------*******---------------
In anticipating O�s return, I cannot wait to get my family back together. I see us all in The Big Bed and watching Andy Griffith (sp?). We had been close to the edge these past couple weeks. I kept having the image of the ice cracking out from underneath us as each of us took to being sick and life continued to press upon us. It came to the inevitable conclusion and we seem to have survived it. Thank you to those who pray for us � it works in God�s most glorious way. And praise to a loving Father who blesses me with a family that I love to the largest extent of my heart.

Hug your kid today.
The next journal will be about Andy Griffith and Mayberry.
(Jo � did I make you cry?)
Love you all � thanks for caring.

Daddy-O

P.S. The chickens, rabbits, and guinea pigs are fine.

Friday, March 24, 2006 7:53 AM CST

Olivia still carrying a fever.

I'm going on up this morning after sleeping pretty much the last two days and had a great nights sleep with my cough syrup. My back hurts from so much bed rest.

Papa will keep Davidboy and they'll maybe do some much needed chores around here.

Can't wait to see my girl.

Praying for Kyle--Natalie.

Thursday, March 23, 2006 10:09 AM CST

1 800 344 2462

That is the number for Olivia.

She is on the Vanco and Gent and still temping. Hoping I can get up there later.

Dave will meet with the Fellow as he was awakened during rounds and really didn't "get" all the info.

Praying for NO INFECTION and a HAPPY GIRL.

Thursday, March 23, 2006 7:26 AM CST

Olivia had a fever last night. I was down with my "sickness" so, Dave took her.

Do not know anything else. Been trying to call.

Tuesday, March 21, 2006 9:38 AM CST

One day after Spring and we finally have snow.

First of all, if I could list a few folks for those of you who pray--and with each child's name goes a whole family--a slew of people who are deeply concerned and in full care.

Sean, Kyle, Alcyia, Zach and as all of you know--Natalie.

********

David was taken to the PED and found no strep, but has a viral infection. His blood shot eyes, fever, stomach aches and now a cough--not eating and we are just in shut down.

So, Olivia's Gtube popped out in the middle of the night--so when Dave caught it and an explosive pouch at 5 AM the stoma had closed to 10F. After some work we were able to get the 16F tube back in. Not a way I prefer to start the day. Nor Olivia. She was so good--overall.

Friday, March 17, 2006 10:01 PM CST

What a BOO HOO kind of day.

But it is the BOO HOO days which bring forth true JOY and PEACE!

Olivia was record belly; David was very puny. And I with the drainage stuff. So, yes, I turned the TV on. AND THERE WAS BACK TO BACK LITTLE HOUSE ON THE PRAIRIE! What a GIFT! Olivia wore fluids all day cranked up (for her) at 200ml per hour. Off to art where I prayed the way down that I would keep my heart off the ole sleeve and keep quiet. BUT as soon as I park who is coming towards me?

MRS. JAN W.! Hugging and seeing Olivia knew exactly then and there; encouraging we all walked into the empty building together--she on one of her missions and the kids and me to set up for art.

We met again outside and there I spilled my heart and she giving me a beautiful picture of God's magnitude and His love for us. It was such a cool gift from God which really gave me a THE shot in the heart I needed.

She talked of one grain of sand--and then all the beaches in the world--how that one grain of sand could be like "this life" and how we could never count the other grains--"eternity"--THIS IS JUST THE DRESS REHEARSAL.

A picture I needed. A gift.

I was spiraling down to that place where I shut everyone off and out.

Now, Olivia was looking fine, but if you looked at her belly--OUCH--huge and she was even took bites of chicken at our early dinner out as we HAD to get some NEW clothes for Boy who grows TOO fast.

At dinner a lady comes up and asks, "Are you hooked up to a machine?" I SPOKE up--YIKES? MACHINE? WHAT? It is funny, how a simply placed word can sound SO out of context. Olivia said, no, I have tubIES. She hasn't called them tubies in a while. She then asked to see what was under her dress! Before I could say anything Olivia had her dress (with leggings on) up and showing her tubes. I tell you what--she left a bit humbled. I was too. We just went back to eating--and I asked her not looking at her--

(In true 80's Sheila lingo)

"Did that freak you out?"

She said, "a little"

WHOA!

Wild.

So she's in bed bigger than ever--and David is in his bed with a fever.

JUST SO THANKFUL THAT DADDY-O is HOME!

YES!

Friday, March 17, 2006 6:54 AM CST

Olivia asked me last night,

"Mama, how come my prayers are not working?"

"Every night my tummy hurts."

This morning her belly is very hard and distended. My heart just breaks for this little girl. There are times when I see how Pseudo Obstruction has taken over her life and this would be one of them. Her voice becomes smaller and higher and everything is different--slightly off--still just a slight--so I'll hold onto that.

She is still sleeping and praying that her medications will do their job today--Please Lord.

Dave is home thankfully and hopefully the "house" and all in it can start healing from his absence.

Wednesday, March 15, 2006 4:07 PM CST

Dave is due in tonight around 11:00 PM.

It was a flood gate. Knowing that we are at the homestretch really meant that I could let it all out.

He is the only other person who totally gets it and when he isn't here; I _feel_ so all alone.

Dave's morning duty allows me some time to sleep; O's pouches are defective--RIPPING and therefore, oh yes...leaking. Every morning!

Last year was an "easy almost typical year" on the outside--Olivia's care was covert. This year has been challenging. Olivia's flares are closer and she is a "sick" girl more often. With a disorder like Pseudo Obstruction in which even the doctors will label it as an interesting disorder, no rhyme or reason--then throw us out into the "world" around us.

I am weary.

It could be worse.

I guess my humanity is pouring out all over.

I know all the right answers--truly.

Tuesday, March 14, 2006 6:28 PM CST

Hurtin' belly blues again--I can hear Mrs. Jo's blues song playing--

Olivia hit the wall pretty hard when we got to worship choir. It still (to this day) amazes me how quickly she can change from feeling all right to--head on the shoulder--pain in the belly form.

On our return there was a message from one of our neighbors that Mr. Bob had passed away. Mr. Bob was our neighbor exactly beside us. The kids and I had planted his gardens by his front door--I found him one morning calling out because he had fallen. He had been having bouts of falling and in and out of the hospital and rehab for falls. We are pretty sad about it. He was 83.

So, overall we are in a low mode. I'm still feeling weird, achy, headache--falling more and more behind.

Pressing on!

Saturday, March 11, 2006 4:33 PM CST

I love Fridays! ART!

I can't wait for the art show.

Today was Pinewood Derby. Dave was called away on business early this AM so he missed seeing David--and his black racing car. He had two wins and two losses. He fared much better this time than at the Pack's derby.

Strange how the day started, major storms, NO umbrellas, and a Mom from the Pack practically vomiting all over me in regards to something which is OUT of my hands. (You know, the ole bark at the waitress about what the cook has done--sort of thing) The thing is it was out of EVERYONE's hands, whatever. Some people really just miss the whole point.

But thankfully, I was able to lightly vent and relieve the pressure and even have great fellowship with fellow cub scouters, grandparents--I sat next to a grandpa who was an assistant chaplain seeing 9 1/2 years of duty.

But the kicker was-- a Dad was praying for me and afterwards I opened my eyes and there was a woman--and she says, "HOW DO I KNOW YOU? I KNOW I have met you and LOVE you!"

I immediately remembered her as Botts had said we looked like sisters!

WOW! It was Jan from Wayside Christian Mission (homeless shelter we had sung at during Christmas)--and what a MAJOR HOLY SPIRIT ENCOURAGEMENT!

I had hoped to talk with the director as he had given me an awesome CD which the residents had made--a choir--true grit gospel--shootin' right from the heart! But I also, wanted to speak to them in regards of art--sharing art there.

AND THERE SHE WAS--the ACTUAL FACTUAL PERSON I needed to speak to! HOW Way COOL is that?

She tells me they have a REAL DEAL gallery which is INCLUDED in the GALLERY HOP in Louisville--does it get better? Yes! She offered for me to help fill it! I could place anything from my own to my students work in it!

I'm painting again--it is from either the Sermon on the Mount--or the City on a Hill--its light cannot be hid--but my painting is no where near ready for any kind of showing--nor is that the emphasis right now.

I feel like the flood gates have opened!

Excited.

So Dave is away, it was a rainy day. I would love to hunker down and homechurch it, but David requested SS and the Bennett House.

Lets serve it up, Boy WONDER!

Just talked with my Dad and he's recorded over 5.5 inches of rain in the last 3 days!

Thursday, March 9, 2006 9:40 AM CST

Imposter.

Slowly taking down the barriers which would label me as such. Little onion layers peeling away--past present--things which maybe one thought were over and done with, but not completely reconciled with God. Holy Spirit revealing the stains, Jesus there to take it on and God the Father still there--just as He was with the Israelites so He is with me.

I have much to Praise God.

Like a child who didn't get ALL that she wanted. The day laying flat on my back with the technician announcing "a girl" is living deep inside you--Dave, Davidboy and Aunt Becca there sharing in my tears of joy--a dream alive.

During Olivia's first hospitalization I struggled with my past life and how this had to be the reason Olivia was enduring this--the sins of her Mother being passed down to her belly.

I truly felt I had a grip on that; God didn't work like that, but I read books, GOOD Christian books which added just layers of bandages onto hurts which still hadn't been reconciled with The Creator of All.

It all boils down.

I've been angry at God. So very subtle that I hadn't realized. Through so many people the Holy Spirit has been talking to me--but like maybe Gideon who wanted to make sure--needed yet another sign. I was not seeking any signs, but God gave many pieces to the whole picture to reveal what was concealed.

And I've probably written in this vein before. Its been a long haul.

Most times I'll deal with anger by withdrawing, so I did with my Savior.

Mindy, Keesha, Jo, Heidi, Patty, Mom, Dad, Greg, Kimberly, ANGIE...The ball started rolling with Casting Crowns' CD given to me...and Kevin Max and "WHEN HE RETURNS" -- all the late night preachin'-:)...then the basic support from those who Love Him and in a trench...parents who pray and love me...a true picture of God...and a brother who is so precious to me no matter how far...and a cousin who with such grace given by God living life...

Dave, who always listens--lives with me--loves me...what an amazing Gift God gave me in my Husband. The right one.

Kim who has been with us from the start of this--just had her 4th BOY--Nathan...and little Joey a twin who I've been hoping to take to AWANA--this is what she sent this morning...

I had promised David that when you brought Joey back we'd call Daddy. I let Joey talk to Brian and he told him that he went to church with Sheila....Brian said "what did you do at church?"and Joey had the most awesome response, he replied "I found my voice." Isn't that remarkable? He later told me when we were falling asleep. "Mommy, I love Sheila and I love apples."

I praise God. Learning to keep the communication open to Him even in the Storm. To say it and mean it.

Yes, Joey...I think we both found our voice.

Precious.

How Great IS OUR GOD?

May ALL see HOW GREAT HE IS!

Wednesday, March 8, 2006 2:21 AM CST

Olivia did have a break on Tuesday but by the evening her belly was big and hard again.

Mrs. Robin gave her a 1/2 hour piano lesson. She has come so far and is doing great! Her recital piece really sounds good; she's been working hard on it. Then later after worship choir the kids went outside to play and Olivia (of course) stepped on a nail.

My heart just bled for her; she of all people did not need to step on anything which would cause pain. She was afraid she'd have to go to the hospital, but we called Dr. N. and all is well.

She asked if Daddy would be home tonight--she gets lots of special love from Daddy.

I slept with her again.

Praying for a break.

Monday, March 6, 2006 6:27 PM CST

Little girl tears.

She's not felt well since Saturday. Last night she was very emotional while playing SORRY and today during school very fragile again. Lots of vomiting, drinking of water--plenty of fluids, but still so "off"--just part of the ups and downs. She did manage to get through a lot of good work. She's a cool kid.

Hoping tomorrow there is relief...
from the
big belly blues.

Sunday, March 5, 2006 10:32 PM CST

Darlings.

I live in a house full of darlings. Dave struggled as a Daddy does when one of his are not well. We really stopped the weekend and slowed way down. It was delicious.

Since Don Knotts died recently TVLAND had a marathon of Andy Griffith. The Andy Griffith Show is THE coolest thing in this house. I had gotten them some episodes from CB the last time we were there and since they've been hooked. Barney is their favorite and really they enjoy his silliness--we all do. Good fun.

Imagination play was in full bloom today. They kind where they gather a few stuffed tiny animals and just act out all sorts of scenerios right there on the floor. It is what they do when Olivia isn't feeling well. Interesting.

Tomorrow is a full school week. Having slowed down last week and taken off Thursday/Friday for our "trip"--THE WARNING has been issued--We are OFF to the races tomorrow.

To JESUS!

Sunday, March 5, 2006 3:20 AM CST

We were blessed by a time away with friends at their parents home. Beautiful.

Olivia did well, but in the evening she grew so tired--she looked so pale...so different.

Friday the pool was opened and Olivia pranced in her bathing suit. I think that it was the biggest part. David needs to learn to swim; Olivia can't at this point--as there is no place safe to swim regularly.

I don't know, but maybe it is just me, but this parenting thing is the most wild ride.

Her belly grew all day on Saturday and is still huge now. I awoke to gurgling and glooping sounds.

We'll stay home today. The Bennett House will just have to wait until next week.

Wednesday, March 1, 2006 9:01 AM CST

NEW PHOTOS! March 2nd

March 1st!

It has been such a big deal to Olivia--these eye glasses! I've had to really stop and acknowledge.

Yesterday after piano lessons the kids and I ate at a small Italian in New Albany. On our way out a lady came right up to Olivia and touched her belly--"what is THIS"--she thought Olivia had her arms through her shirt and the bulge was her hands.

So, right there on the sidewalk Olivia and I explain the mini--extra quick version--GI disorder these are tubes kind of deal--and boy did that lady get quiet! Everyone involved was very composed!

Off to the library where I am always inspired. Then to Choir practice. The children are learning "HOW to" sing right now. But the main key goal is to grow them spiritually. They are keeping Jesus Journals. Olivia wrote in hers right away last night...

I love Jesus and I love God.
xoxoxoxoxoxoxo

I'm trying to get through to them that God is with them right NOW--next to them--beside them--ready and willing. In talking this out with them, I realized that in my pride and hurt over the years I had closed many of my Jesus doors in my heart. I had stopped talking to Him--in real ways. I'm praying that this worship choir will grow us all.

Monday, February 27, 2006 0:13 AM CST

Olivia's demeanor has been one of delight. She is a gem to be around with her little air kisses and "you are the best of all the mamas". It isn't to gain anything but voicing her feelings.

Tomorrow David will read what Pseudo Obstruction is, and a little history of Olivia's story. Olivia then will take over with show and tell. She is very excited was coaching David to make sure he did this or that. It is SHOW time for Olivia. We've discussed how to respond to the "ewww yuk" comments which may fly. When your kid wears her poop in a pouch on her belly--and you are TELLING what it is--you are opening the firing line.

Today's message at church dealt with the storm while Jesus and his Disciples were in the boat. The song which I've made almost my anthem--"I'll Praise You in the Storm" Casting Crowns--was sung. I want it to be true in my life. We talked about what a storm is with Olivia. Olivia came with us. Its flu season and the SS rooms are so small. I guess too, I'm a bit zealous about having her close by right now. She crocheted with her smallest needle throughout church and gave it to David's SS teacher afterwards. Time just feels so extraordinarly precious.

I've had two days in which Olivia and I take a nap together. We are wrapped together--she loves my warmth and I love the fact she is right there beside me.

She seems pale.

It is such a strange sensation when Olivia's clinic report arrives. Even with relatively good news--it is just so hard to read it on paper vs. having it being said.

As I tucked David in--he commented that he wished he had a central line so he couldn't get out of bed and do his chores until after he was unhooked. Had THE talk of the importance of his reading the "speech" tomorrow. He was concerned that the children would not understand it all.

He was intrigued by the mentioning of NG tube, and now can read words like contraction, obstruction, motility, chronic, esophagus, and ineffective.

So, boy wonder continues on this journey with us.

I'm so thankful.

Sunday, February 26, 2006 0:25 AM CST

PINEWOOD Derby! All the Scouts in their chairs rooting one another on; David was MADE for Scouts. It has been a God send in a world where athletics for boys is such the NORM.

Olivia and I snuggled in for a nap together. Out of the blue she said, "I just can't wait to be in Heaven and to be without my tubes; I won't have any more tummy aches, right Mama?"

In checking my email--I skipped over to some caringbridge sites to find that a little girl had passed away waiting for her organs. Looking at her pictures I saw Olivia's legs.

So the kids and I checked out giftsfromheaven where there is a photo of David and Olivia when she was 2. Olivia had a lot of interesting questions and we discussed transplant again. She asked if she has had a transplant.

Today IS the day that THE LORD has MADE. LIVE it!

We were invited to join Aunt Becca and Jordie to see 8 Below. I knew it was rated G and nothing else. It was an amazing story. We had much to talk about when we arrived home. What a blessing.
Two movies in less than 2 weeks. Whoa!

Back to reading.

Monday is Science Club. Postponed from last Monday! The focus this month is HUMAN BODY. David and Olivia are going to share about Pseudo Obstruction--and in doing so delve into the GI tract.

I would appreciate prayer with this. As this is the first OFFICIAL speech both will be delivering on such a topic, so very personal but yet so timely and needed.

Wednesday, February 22, 2006 10:54 PM CST

Countdown begins. It is officially ON Olivia's horse calendar. The receptionist said 2 weeks, and that is what we counted out. And after 14 LOOOOOOOOOOOOOONG days there is a drawing of GLASSES. She is PINING for them. Praise GOD!

WOW! All the edges are ripped and torn! It is going to be so AWESOME when the house is put back into order.

But ALL in due time.

I found a wonderful website from a Classical Education point of view stating 10 things one should do with their child prior to 10 years. (All right, some of you are snickering) One that stuck out was reading to your child. How much David and Olivia (esp) LOVE this. Anyone who has spent time here end UP reading to them.

Mom took over the reading when she was here and I realized how much I love and miss it when we don't. Taking each day as it comes--there is no set mold or time frames to the teaching and learning--that has been #1 lesson of this year. If we have a certain cool type day in which it seems to fit; it worked for that day. Which means it may not WORK for the next. Having piano on Tuesdays at noon is case in point! Taking each day as it comes and putting the learning groove into action.

Spelling bees are the high fashion as well as money and time flash cards. Olivia is mastering time and money and it allows me to work on multiplication with David by asking if Olivia's balloon was 6cents then how about 3 balloons. Lots of crossing over and weaving into--I love to teach my children.

Today was case in point--during David's piano practicing Olivia reminded that we hadn't PLEDGED to the American flag! It was so cute; we all turned and there was a mini flag on the wall--and we all in unison began without missing a beat. I had to get over that we may not do it TOP of the MORNING 8:55 SHARP, but boy, when we say it--its pouring out of our hearts!

Tonight was alphabet night. I was given the letter M. Messy jeans with MOM written on the, a map, sheet of music.

Olivia chose J. Jesus, Jell-O, Juice, Jewelry, Jungle and Juggle. I really need to start taking photos. She was beautiful. She said, "Oh I wish I could wear God too". Whew.

David's letter was S. Speed skating, sheriff, soldiers in his pocket, shark, sweat shirt. HE and I are BIG fans of APOLLO! GO APOLLO!

Pastor Ken was sick and asked if I would do extended worship. I took liberty to do a few of my heart etched songs. What was so cool was, Olivia singing OUT--"OH HOW I LOVE JESUS--OH HOW I LOVE JESUS--OH HOW I LOVE JESUS...because He first loved me." I thought about that while talking with a friend today--HE loved me--and has been preparing me for the NOW. SO COOL! He placed in my heart as a child the LOVE of sharing, teaching before I KNEW HIM. And kept it up...all along.

David did the OLD TESTAMENT BOOKS! And said there wasn't enough time for Psalm 23. Sitting behind me he recited it--driving home in the dark--He said it with the sweetest voice ever. We then all broke into our SURELY GOODNESS and MERCY. . . Olivia loves John 1:1-4 and did AWESOME on her two Proverbs.

Dave was working on TPN and I was chatting with him, David eating a dinner snack after church and O in bed--with tummy pains. David asked if I was going to stay out for much longer--asking him why, he said, if so, I'll go back with Olivia.

Arms of love

Wednesday, February 22, 2006 0:00 AM CST

Tuesday!

David and Olivia both received their recital pieces at piano lessons today; I can't even play David's! Olivia's is called "Splash, Splash".

Off to eye examinations for both. Olivia indeed needs and was fitted for glasses. She is going to be counting the days until she gets them.

Nearsighted. Doctor said nearsighted children are the best readers.

Olivia was in full MISS SPIT form.

We rode bikes when we got home and began putting the pieces of Olivia's room back.

Love to all.

Monday, February 20, 2006 5:11 PM CST

Please continue your prayers for Natalie. There are updates being listed on her guestbook.

Olivia is in a constant obstruction. She's got that LOOK.

Her Jtube is still playing havoc, but Olivia now understands a bit better as she kept pushing the disc down which then pulled the balloon into her stoma stretching it. Hoping that she gets it and will leave it alone and it'll heal. It has been a bother to her--more like a fearful concern. And MAMA has a grip on what is going on--I was wondering WHY it kept slipping--the snickle thought she was helping herself but really was making it worse.

Dave is stuck in Atlanta's airport.

I miss Dave. I feel like his arms and my arms are outstretched never to be close enough to touch! I so hate that mode.

ITS COLD!

I really need prayer that I can get O's hair rat free. It happens in one night--and with the weekend we had here--it has gotten to record worse state. I fear I'll have to cut it which will crush her. I've never seen hair tangle like hers.

We were such a sight today eating breakfast out. I had to get out of the house--both working on their work, Olivia with her hair in a braid but ratty, putting her head down due to the smells--all of it! We all ran for cover inside our little box we call home. It was trial run for piano lessons tomorrow, AND eye appointments for the kids--(about time, Sheila).

LIFE!

Did I say its cold?

IT IS COLD!

Sunday, February 19, 2006 1:49 PM CST

It is finally WINTER cold here. Cracker crisp. David fed early the hens and bunny.

Olivia is in big belly mode. She looks off and her hair is in need of a major brushing--total RAT central due to not having brushed it.

Dave called and is in Texas for another day. Will swoop in hopefully in time to take the Tiger Scouts on their "hike"--

Friday, February 17, 2006 5:55 PM CST

Poor Papa. So sick. He called right after we returned from seeing Curious George. Driving the kids to Dave and Dave able to change his travel plans until tomorrow AM.

A total God thing.

Time alone with my earthy Daddy. Precious for sure.

He is much better.

Yes.

Curious George: The music was delightful--I wanted to dance. "If I had a minute for every hour wasted..." was one of the phrases from a song. Reminding us to live life--now. NOW. Glad to see a RATED G movie I could take my children out for a movie date. Not as emotional as NEMO for me, but it was good.

Love to all

Thursday, February 16, 2006 9:10 AM CST

Thanks to all sharing information, advice and support all in ONE! So needed!

On this path of life where the corners are not designated as anything in particular and the valleys a bit darker and deeper at times and things seem to go on and on--until you realize you've been heading down the spiral a little faster or longer than needed--when one flips out (even if it is just here in words--or even in the shower--or or or...)it is as if the gear shift of life adjusts to head inch by inch in the right direction again. Prayer.

Olivia had a big day and asked to be brought home from AWANA early. So, Daddy to the rescue. Her Jtube is leaking a lot due to the balloon stretching the stoma, but I'm on top of it for the most part. Her feelings were raw last night because of that and she overheard someone commenting on her tubes which normally doesn't produce tears. "THEY saw my tubes and and and I heard them talking about my surgeries, they do NOT know about my surgeries". She is very much into educating folks right now. So may see if we can do that with her AWANA bunch.

We shared at choir practice about her tubes, etc. Will again at Sci Club as the focus is going to be on HUMAN BODY. Since I missed the deadline for the Sci Fair (bad teachermama) David and Olivia will take part in this. And then next month it is my turn to leadteach and they again will have there portion to present.

Sometimes I want to say, yes, there are people in this world who have NO food. NO food to eat. There are also people in this world who CANNOT eat food. Wild. When I read about friends whose children are NPO--NOT allowed to eat for it'll make them sick. Whew. Olivia has to self NPO herself.

Dave said when he brought her home she had a lot of questions on death and Heaven. This isn't anything new, but maybe a different level of understanding. She was so concerned when I changed her tube out when I saw blood. (just drops from the stoma being irritated by the balloon) She was sure she was going to die.

Its time for her to have some fellowship with "her" people--who are now OUR people--embracing them closely. One conference around the corner at the end of April and another end of June. I'd say needed from all aspects--Olivia, David, Mama and Daddy...

Shine ON!

Tuesday, February 14, 2006 8:09 AM CST

Snap Crackle and POP!

That is how I feel with NO SLEEP!

Over and over the days will come and go and broken sleep just about does me in--I'm like a walking time bomb. I know Dave has been feeling it too--he emptied once or twice last night. AND STILL GETS UP AT 5 AM. Whew.

The dam broke last night--admitting my weakness and His Strength--

Larger pouch for Olivia and one of the new fangled ones to let out air at the top. WE NEED HELP! The pouch is either filling with air or stool--too many times in the night.

The beat goes on.

Shine on!

Sunday, February 12, 2006 8:28 AM CST

Sunday morning.

We did the trade off Friday. I left David at his buddy's house while I took two of the girls to art. Olivia loved being with her "older girlfriends" as she calls them. She told me during the 2nd older art class that she "tooted" and one of the girls called her on it. She's had an increased level of gas; her pouch at times looks as if it could lift her off the floor it is so full. Olivia commented that Rachel scowled at the other little girl who brought it to attention. Sensitive kids are the coolest!

Papa showed up in time for pizza then off to watch the kids skate. ROLLER SKATING is offered two times a month in our church's gym, skates and all. A MAJOR BLESSING! Dave comes straight from church and immediately gives Olivia another lesson. She holds onto his pockets and for several seconds at a time will have grace on feet. I love watching Dave skate. He helps the children and it is showing. Olivia was skating on her own! She even raced; David too--HOO HOO it is so nerve rackingly fun.

It was like old times having Dad there. I got to give play by play on the folks--several of my art students there and kiddos from church. It gives "ME" that sense of communtiy I so love with other children. It can't be helped!:)

Saturday morning we finished bringing the rest of Olivia's room out into the big room. Dave has the flooring about 80inished! We'll paint the baseboards and maybe do a little painting. I don't know when, but we will.

Olivia was big again yesterday. Lots of drainage out the G tube and pressure out the J tube. She was having a hard time collecting her thoughts last night but is fine this morning. When she is tired and done she is tired and done.

We met up with some friends to make Valentine cards. So, now Olivia is in a constantly manufacturing new ones. Don't anyone hold your breath as I'm horrible about mailing things. But her eyes lit when I read her card from Papa Pete and Grandma Bert--she loved it, thank you! And when I read the back of BIG O--she knew instantly it was from Auntie Joyce.

Love all of you!
Shining for JESUS!

Thursday, February 9, 2006 4:43 PM CST

Olivia had such a great day and thrived at AWANA last night. Cubbies didn't "need" music so I had opportunity to watch the kids during game time. I was amazed watching Olivia--she looked so typical and normal--SO excited and full of life.

I love the basement school. For anyone who has seen our basement prior will be amazed. It was half dumping zone and half art studio and well, did I say dumping zone? :)

I have a desk! If the kids have a question or we need to look something up we can google--lots of neat multi tasking--I can go to some of my fav teacher websites and get extra helps when needed right then and there! And the kids can do some enrichment via internet games as well--I love it! It was time!

We start each day with the PLEDGE and PRAYER and then it is very flexible. Today David worked on his poster for his "book report". He has 5 more books to read before graduating to 2nd grade Language Arts. Some are hefty chapter books--all which he chose from a stack I offered him.

Both are SO close to their 20 sticker goal for math. They receive a sticker for every 100% page on classwork/seatwork or anything we do related to math; it had helped Mr. Speedy to slow down and Miss Spit to work a bit harder.

Olivia is in a weird obstruction again today; she is to vent on both tubes and a bit weak. Will give her fluids now.

Shine ON!

Tuesday, February 7, 2006 12:32 AM CST

I've seemed to settled back into writing more frequently again. Seasons.

The roller coaster ride is a fast one and Olivia's belly was flat this morning. She and I both slept in the big bed again and when her TPNpump awoke us and I began to unhook--I tapped her belly with a smile as David had joined us in the early morning and was still sleeping next to her--and she mouthed, "I have a FLAT belly again!"

I knew that I had to let go of Scouts (I help Dave get things together) and funny thing--I bet it would be a lot better if I would just stay out of it and not make it so--educationally organized!

Olivia not feeling well I backed down and out so Dave and David went off to Tigers--two menboys. AND GUESS WHAT? IT was fine!

O took her long awaited shower bath--standing with the shower head--I washed her hair and then she stand there--it lasts as long as the hot water lasts--she gets one at the most a week. Afterwards we comb out her hair, dry under tubes and hit the bed where I take off the wrappings which covered her central line. Last night she read to me--and I sat there thinking--wow, how far we've come she and I. I am not lazy in changes now, but know how things can be done safely and sterile--without masking up to my eyeballs. She would need to have the TV on and holding someone's hand in the beginning; the beginning began at 2 years old. She's almost 6 now.

After a fresh dressing and a new cap I left Olivia to her crocheting while I prepared the TPN and lipids. When I returned she had fallen asleep--needle in hand and a beautiful pink chain about 2 feet long.

Hooked her up. She slept through it all--7:30 PM and she was completely done.

With Dave and David home and their dinner fixed and sent to the basement; I delve into Olivia's language arts. I'm so utterly excited about the leaps she is making.

I was working beside Olivia as she slept and that all too familiar smell--POUCH LEAK--on the CLEAN SPANKING sheets!

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAACCCCH.

As I moved her to place a towel under her--she woke up and smiled, "Thank you, Mama" and I, with a grumpy heart of grouchiness of yet another stripping of bed in the morning said, "for what?" and she said to me, "For everything".

Gulp.

Ouch.

Wow.

Yes.

Love.

Talk about a smile embedded onto my mama's heart.

Sunday, February 5, 2006 6:31 PM CST

Long night with the girl. She vomited several times and was in pain. She has gross distention. Low urine. Will take some in today--lab. Praying they will not look at me like I have 5 eyes.

Praying for leading in EDUCATING these people.

Olivia had a pouch leak (my least favorite, mainly because I know she hates it so too) in between the other wake up calls. Thought it would be best she and I sleep together in the big bed--glad now we did. She said that her belly felt like it had a dozen eggs in it and the way it rounded out--it looked like ONE HUGE egg. In the middle of the night she'll say the most bizarre things and I attribute it as a blessing to (even though sick) share these moments with her.

Then upon emailing this morning I was struck that this is the 3rd week in a row (that I clearly remember) that Olivia has been obstructed--this time it didn't wait for a full week. Ugh.

This brings one to imagine all sorts of things.

Feb 4th
Little Miss Olivia.

She and I sitting at the computer--showing her things which have been sent weeks ago!

She had the hair wrap and wanted a picture--so this is fresh off the press!

Big belly tonight, but we anticipated and gave a Liter so she looks great.

Did some stamping with ink today--which is what you see.

Having fun in our IMPROVED basement--

God is so good!

Saturday, February 4, 2006 9:23 PM CST

Friday art was so fun! We worked on collagraphs and with time left had the children draw a self portrait using their oil pastels. David didn't get to his yet, but Olivia is ADORABLE.

I will try to place her drawing on the next page.

But we came home to very sad news. A dear friend passed away. She was such a great encourager at the last NS conference and sharing so much about her life and her zeal for the Lord, precious. I remember our not wanting to leave--I remember hugging her thinking we may not see each other again in this lifetime. She will be greatly missed.

Precious friend.

There are several of our dear friends who are in a major crisis. We ask for prayer for them.

As always we give thanks.

Thursday, February 2, 2006 10:35 PM CST

In just a few hours I'll be driving my Mom to the airport. This has been a very incredible month.

Olivia had a mini meltdown tonight. She claimed she was so tired; I checked on David while Mom was saying good bye and he was in there crying. How much they will miss her.

I will miss her.

The kids really took off with piano and reading and everything; I owe it all to her consistant badgering! Nice to have parents who are really cool teachers of life.

So, I'm in my blue bug mode; tomorrow I teach art and the kids will go with me. I want to hide away a bit, but really can't. I tend to get myself into such fixes as I know I could easily seclude.

Checking in on many caringbridge families tonight I'm reminded how precious life is and how quickly it can change. I'm encouraged by the courage.

I think that makes my heart ache so is knowing my Mom will be far away again. That she won't be that added extra love factor in the house. In a world where sometimes you don't feel a fit it is nice to come home to that connection intact.

I'm praying for a more eternal view and some days it is like the blue sky and warm breezes, but then there are those days in which the dankness of the day can take over into those places. . .

So, Olivia continues to be snotty. Maybe IF we ever had WINTER it might be different? She had a Liter of fluids again today. She looked good. Going to keep her well hydrated to get through this nasty cold. She was in a dumping season as well, but that seems to have slowed. She just looks so pale; her labs came back looking in range.

I am reluctant to take her to PED (massive flu junk going on here)but may have to break down if she continues and possibly some sort of ALLERGY meds.

. . .

. . .

. . .

. . .
. . .

Tuesday, January 31, 2006 0:35 AM CST

Olivia got lost in church Sunday.

We do attend a fairly large church (biggest for me) and between services she and I were chatting with one of our most favorite people Mrs J Whittenberg. If anyone knows her they know why we love her so. Olivia asked if she could go sit with Daddy. I pointed her just directly to the door--not far--just down the aisle (I'm not talking super mega huge big church building). She got to the front pew and no Daddy.

When we talked about it later that night in our N.E.S.T. having a PIZZA she started to spill it all out.

I had NO idea she had this episode and felt as if she were lost. We've talked about what to do if separated and who to turn to what NOT to do, etc.

She went on to say that she would have surely died if someone had taken her. They don't know how to do my TPN.

Those of you out there--with little ones in special circumstances (Oh yes, I feel this way with David on many occasions, but a lot due to what it must be like to be a brother to a sister who wears such things to keep her alive)--how I would love to understand more fully--to spend a 5 minute time frame in Olivia's head.

But then again--it would be of colors, yarns, kitties and dogs, babies, songs and giggles for sure.

David's TIGER PACK MEETING! David was the "caller" for his den--he called out the commands! He did great! It was a lot of fun.

I hear Papa snoring on the monitor. He is sleeping in Olivia's bed while Olivia in her sleeping bag on her COT from Uncle Paul. What a blessing. She wanted to camp out with Papa.

> > > > > > > > > > > > >

Thursday, January 26, 2006 11:00 PM CST

Listening to Casting Crowns--Lifesong.

Amazing CD a friend sent to me after I had disclosed my mask wearing days were almost over--still not sure. I want to be set free of pretending.

The swirl of different worlds keeping me in a constant whirl.

Finding laughter. Don't we all go through passages in which we lose something? Then God sends it to us--whether we accept or. . .

Olivia lying on the examination table for her final look over--Dr. K turning to the Fellow and me. In essence we all concurred--Crazy disease--deceiving. Flat bellied, big brown eyes and hair almost to her bottom; she handed out her crochet chains to her Nurse Gerry. Keeping everything the same--she's growing. Dr. K again turning to the Fellow sharing all that Olivia does do. That's right--all that she does do.

The day started with breakfast out. Olivia loves pancakes--lets pack the pounds on girl. There (a bit tired from the night before) she sat with the biggest fullest tears on her cheeks and one just waiting to fill a bit more to drop from her jaw bone--"I never get to be with Papa alone".

Entering the clinic waiting room. Some days there we sit alone, but today Olivia in her multicolored skirt and long sleeved Snoopy shirt and PINK boots from Mrs. Keesha--she sat with her smallest crochet needle and finest of yarns--like the old soul that she is. Around her children older and younger just watched her. She and I spoke of the birds on the walls--naming them. Uncle Bill, you'd be proud of her. She is getting so good. Now to get her on the field for a test.

A little boy with little to no fingers and probably toes--his first time at GI clinic--stole MY heart away and Olivia's new white pony her brother had bought her just an hour before. She graciously allowed his precious fingers-- which I'm sure his mother has grieved over--hold.

Dark skinned children, light skinned children--there we are a part of an intersting family. Wondering each's story (at least I am--there my mask is easily taken off--I am willing to go out on the line--scream WHAT keeps me together--where to find REAL support and REAL LIFE MEANINGFUL answerS--knowing that they have felt life changes in ways they never though possible--your WHOLE family has been--changed--within a few words called a diagnosis)

I did laugh today and even in clinic. Today was that kind of day; one is free to laugh in such a way when all is well.

Auntie Joyce and Mom met in the cafe during clinic. Precious people in our lives.

Olivia has asked so many times lately about her surgeries. Mom mentioned to her that the crown of paper flowers hanging on the back of her bedroom door was given to her by Aunt Becca. So now it comes to how her story is interwoven with other people. Yes, Aunt Becca and Miss Donna came to see you after the BIG surgery--there she painted your toes. And sang her animated songs, tickled your toes and probably even put them in her mouth. Yes, Olivia she was there every day when you had your infection from the PICC line and came the morning of your central line surgery. Isn't that cool?

Got word that Mindy did well today. A year of the same is ahead of this strong woman--a wife, mother, daughter, sister and the list goes on--but He is there. Praising HIM!

Jennifer G--Prayer Bears--wow--thank you for praying for my cousin.

Marsha--your messages really perk my heart into gear, you know YOU are making a difference?

Stained Glass Masquerade

Mark Hall~Nichole Nordeman

The performance is convincing
And we know every line by heart
Only when no one is watching
Can we really fall apart

But would it set me free
If I dared to let you see
The truth behind the person
That you imagine me to be

Would your arms be open
Or would you walk away

Would the love of Jesus

Be enough to make you stay?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Wednesday, January 25, 2006 11:13 PM CST

I am glad you are retrieving more of you...yes...being a mom, especially of a medically challenged child, is a large part of who you are...but it is not all you are.

wife, daughter, gardener, teacher, artist, sharer of faith, lover, friend, reader, worshipper, creator, naturalist, God-bearer, mother, neighbor, blogger, joyous, aunt, driver, crier, doubter, prayer-er. foodie, swimmer, sister, grateful, lover of Jesus, ..... and that's only the beginning... :)

~~~*~~~*~~~*~~~*~~~*~~~*~~~*~~~

I received the above from my first real sister in Christ. I say real because I saw her 5 days a week and she loved me anyway.

I just loved her wording of all "we" are to one another.
Bless you, Sarah. I miss you and love you so.

*~~~*~~~*~~~*~~~*~~~*~~~*~~~*~~~*

Tomorrow is my cousin's first chemotherapy. She was diagnosed with breast cancer just days before her sister's wedding--end of December. Remember Mindy in your prayers.

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

Olivia did in fact put on her own pouch last night. There was pouch which the wafer had already been cut so she used it. Grandma said that Olivia had millions of questions after the lights were off. Mom shared with Olivia about the day her dad died. The questions which surfaced from such a conversation kept the two girls awake on the late side.

The pouch needed to be replaced prior to leaving for AWANA. She did it again--I cut the circle for her and she did the rest. I am sticking to her having to be at least DOUBLE DIGITS before even attempting ANY sort of training on her central line. I have not said WHICH DOUBLE DIGITS either. She is in a growth spurt. I ache to hold my babies again. They are truly little people.

***********************************

School is progressing nicely, but it does help to have a substitute teacher on hand--I think Grandma has moved to FULL TIME TEACHER; I bet NEVER in her wildest dreams (she was a HS business teacher) did she think she'd be teaching two children. Olivia excelled on her verses, both David and Olivia have had THE best piano lessons EVER; and I do believe that Olivia improves daily on her phonics. Mom is a DRILLER--a good teacher. I'm blessed. Not only has she been a teacher, but ALL the laundry and dishwasher duty.

WHAT AM I GOING TO DO when she returns HOME?

Love you, Mom. Thank you SO much--arms of love. You are the bestest.

~~~.~~~.~~~.~~~.~~~.~~~.~~~.~~~.~~~.~~~.

Clinic tomorrow; I can't wait to see HOW much Olivia has gained!

*****************************************

TO JESUS!

Sunday, January 22, 2006 1:13 PM CST

22

It has now been 2 years since Sarah's passing. How much growth has taken place within her own family; I look forward to seeing Chris and the girls soon.

April 22 is the day Matthew went to Jesus. It is also the day that Olivia had major surgery.

22.

The basement is increasing in STUFF; OLD stuff NEW stuff--stuff we didn't KNOW we had STUFF--it is great. I'm ENERGIZED to TEACH here--

The classroom will be officially called

"THE NEST"

Nurturing, safe, warm (when the dryer and heater are on), full of learning and guidance--

THE NEST!

Most of the crafty STUFF is out and available so Olivia is THE CHILD in the candy store--opps, CRAFT STORE!

TO JESUS!

Thursday, January 19, 2006 8:34 PM CST

Seize the day.

The kids and I began THE huge task of making our schoolroom in the basement today. It IS time. With their increasing interests and the upstairs lacking in space we need to move EVERYTHING down and use little desks and set up stations. I am SO excited and I think they are too.

Olivia was quiet today--not her usual running self. Not sure what is brewing. Her urine is darker as well and so it might be time for urine culture AGAIN.

David practiced piano--
GOOD NIGHT LADIES--

He is getting it whereas it seems Olivia is back peddling--sickness will do that.

But the little snickle wrote DAVID at the top of HER paper today. She is so fun.

David loves history. Mom got the kids Lynne Cheney's book _A Time For Freedom_. We are reading from A Child's Story of America. And I have fallen for George Washington--so got a book for David to read about this Founding Father. It begins way back as a boy. It is just great stuff. I loved history in 7th grade with Mr. Mershon. He was probably one of the top 3 teachers I ever had in elementary/jr/highschool--I loved history then but it was stamped out somewhere else along the line, only to be rekindled by my 7.5 year old son.

It was afternoon--Olivia was so quiet and just quiet all day. I told the kids to go outside to play--and Olivia asked if she could fly her kite from Uncle Greggie and Aunt Kim. IT WAS SO COOL. THE WIND WAS SO STRONG--SHE was SO happy--it made her smile. David got his out too and THEY BOTH FLEW KITES with ease.

Slowing the pace has been so healing in so many ways. I think sometimes we go so fast to hide from something.

Thursday, January 19, 2006 9:40 AM CST

FINALLY.

Grandma has gone to URGENT CARE--horrible cough and overall not feeling well for too long.

Olivia was in an obstructive mode all day yesterday--no eating all day but plenty of vomiting. Fluids ran to keep her hydrated.

David full of energy but locked into place--but today we'll get him out.

We played card games (phonics) and then pulled a Bible card--talking about Jeremiah. How he needed God to give him the words to say--

Then at the bottom asked who is the best speaker and best speech you've ever heard.

Olivia piped, "Pastor Scott and Pastor Ken"--only after we said eartly men now. Then when we mentioned the President both said--OH YES! Neat.

But the best speech for Olivia was when Jesus told the Disciples to let the children come to him.

We watched March of the Penguins. Oh my. How God has created his creatures!

Amazing.

Monday, January 16, 2006 9:09 PM CST

Its time for an overall update.

We are striving for more sleep. FOR ALL of us.

David is really diggin Scouts; he got his first lesson on Pinewood Derby car tonight. He is most pleased with it all. School for him consists of a book he is reading about George Washington. It is a neat chapter book with terms from our nation's past. I even have to get the dictionary out for reference! I love how it talks about the fortitude and greatness of our first President. I've let go of his reading the 1st grade reader when he is reading above that level and the topics and themes would be a bit trivial almost. Math is fun; he is still really reviewing thngs we covered last year in hodge podge, but the meat is coming fairly soon and he knows it. We did some logic today which he really sunk his teeth into. American history, Bible history, verses and monthly science (for now). Spelling and language arts really comprise of worksheets from various avenues--but for the most part lots foundational stuff. Starting to write creatively every day and drawing along side. Something that is so important but little time if doing ALL the WORKSHEETS--just a new season!

Olivia practiced a LONG time on her two songs for piano lessons tomorrow. I can't wait to hear how she did. She's been enjoying time with Grandma. They are two peas in a pod to say the least. I can't even begin to share in HOW MUCH OLIVIA is EATING. I hate to even mention it, but will SING the praises of THE ONE who CREATED her!

She is very much into fiber working--yarn is her tool of choice. She loves it.

I'm hoping to really carve some major time and make a unique space for her "stuff"--artist thing.

Her eating--RICE CRISPIES still--I think maybe a box every 2 days? Strawberries, and anything else--she loves DRINKS other than just WATER now--PINK LEMONADE and MILK!

Grandma has been such a great help--still feeling REALLY--VERY LOUSEY--sending her to URGENT CARE tomorrow to see if SHE needs something.

Praying that O will be still a munching girl come clinic next Thursday--she will knock their socks off--I know she's chunked out...I love it.

Thursday, January 12, 2006 4:57 PM CST

We have been blessed by God--it is truly His working that allowed this to happen.

A dear new friend afforded this chance:
And I--having a very hard time accepting this "favor"--but now I'm so thankful that we "went" for it. . .

Dave, David, Grandma and Olivia and I . . . .

SO, there we are-- a great first time--once in a lifetime experience--this after in our American history learning about George Washington and the Constitution, etc. Wow wow wow.

Yes, I'm a Bush supporter; don't want to make this a political thing.

He ROCKED!

His beginning introduction was so great--laying it all out--very down to earth--real. I know for those who disagree--will disagree, but I know what I saw and heard.

ANYWAY...it was in a Town Hall forum and with about 400 people present at the end he made his rounds signing, shaking hands, and I was encouraged to take the kids down--we were only 4th row up--and there...I kept telling them to scoot down--

and just as he was about to leave--a woman said, 'Mr. President, how about these two--and he patted them both on the head and said, Hi there!'

It was such a remarkable day--having commentary being played by someone who is "in" the know of a lot of this...just a HUGE blessing.

THANK YOU LORD--and thank you for using such a person like MRS. Keesha...to be brought into our lives...thank you.

Stars and Stripes playing as he left--tears--the piccolo solo was grand. (recorded music, but someone KNEW what they were doing when they chose this one!)

I could go on and on--but wanted to share with such folks who GET it when your child is afforded something--very special--It made me think of our SAMUEL in SCOTLAND...

I know that Olivia and her testimony really has touched so many--but the major blessing on the way home was when out of the blue--while sucking down a HOT CHOCOLATE was when she said--

"I want to be Baptized"

(David stated he must learn to swim first)

Whew.

What a day.
Peace.

My step Dad said he watched it IN FULL out in CALIFORNIA on FOX NEWS! Way COOL!

Way to GO JERRY!

Saturday, January 7, 2006 8:14 PM CST

Grandma LODGIE (Logi) is HERE!

It has been such a great visit. Laundry is CAUGHT UP--although, Grandma may not say completely so.

Last week was still running to and fro connecting dots which were left unattended.

Monday we'll start back to "school" although time spent with Grandparents and loved ones is always a learning experience.

We are working on sharing stories, listening to one another.

This could be a most exciting week, but more to follow in those regards.

Olivia's pseudo obstruction has been nearly invisible. She is eating Rice Crispies daily; she counted 5 small bowls tonight at dinner. Strawberries, really anything--she is an eating machine and her cheeks are starting to show some slight change.

Emptying her own pouch now, before she would still ask for help, but now--it is completely her own private world. She'll take the overnight catheter out in the morning as well. Every morning at Grandpa and Grandma's house she was FIRST to greet the day with Grandma--David was most dismayed! She would take her TPN bag and pump on down with her! This is BIG stuff and something I didn't really plan for, just like potty training David--I just took the diaper off and said, use it. He did. Not too early--nor too late--God's gentle voice saying--try now.

Just as the other night I felt that same Voice--try it. So, I grabbed one of Olivia's SSRW books--the short u book--and she sounded out words. She is what I would call officially reading. Very exciting.

As Aunt Becca and I lay on O's bed she crawled up and read to us...putting us to sleep after a yummy lunch after a hearty morning workout.

David's leaps are just as monumental, but will save for another time--he is officially my "Boy Wonder".

Peace.

Tuesday, January 3, 2006 9:48 PM CST

POW!

A NEW YEAR to BOOT!

We had a grand time in St Louis; it was such a blessing to be with our family.

Grandma was dropped off by her two sisters. It was a needed face time no matter how quickly the time passed.

With mom here I hope to put Sheila a bit on top of the list of things to do. With help from Aunt Becca--I hope to get a jump start.

Boundaries are also top of the DeKold list.

I'll have Dave post new pictures as they'll speak volumes.

God is so good.

ALWAYS.

Friday, December 30, 2005 0:08 AM CST

December has come and gone!

We are in St Louis--the kids and me.

David with a horrid cough and Olivia's still lingering.

The time here very blessed and precious.

Looking forward.

Monday, December 19, 2005 11:12 PM CST

This is THE LAST week of Dave being away during the week in IL. When he first told me I thought of all the things I would accomplish and how it would be just fine, easy, even.

It has been anything BUT that.

I miss him. I hate that my best friend is away from me and we are unable some days but to talk briefly.

Papa Virg has been such a blessing by coming down the last two Sundays to be with the kids so Dave and I can go to the last weeks of our Bible/study class. More on that when we are completely finished.

Christmas choir really has been a big gig. The Widow's Banquet was such a success--others are asking for them to sing! We hit The Bennett House--assisted living home--where D, O and I sing and play piano once a month--then the choir did Wayside Christian Mission. I have to say each opportunity has been a heart felt changing blessing. We go there to encourage, entertain, and energize the folks, and come away from it blessed more so I do believe.

It IS better to give than to receive!

Olivia danced at her last recital. We'll be looking again for a dance teacher/class which might fit more what our goals are. She did such a great job!

This week is. . .crazy.

And this morning God gave me something this morning--pointing out the difference between being LED nad DRIVEN.

I want to be LED by GOD--not DRIVEN by my self.

So, its Monday--Dave leaves, Dad and the kids and I go to lunch, I then RUN into a fabric store to pick out material for the COSTUMES for the Friendly Beast song the children have been asked to sing for both EVE and DAY service. (It is gonna be good--very good--because I'm tired--and would rather NOT go--SO I know GOD IS GOING TO BE ALL OVER IT!) Come back home and start to get things ready for the PACK MTG. Hoping to hook up with Mrs. L to get the shepherd costumes before the PACK MTG. And I realize I had forgotten the TIGERs' BEADS!

So off we go, Elise home with Olivia--David and I drive back home--its dark now. And as I'm approaching the church from grabbing the beads--

. . .I'm crying (WOE IS ME) how DID I get into all of this? LORD help me.

Then with the direct stillness of HIS mighty VOICE, You cried in October because you could not go. Remember? You were driving to Cincinnati with Olivia and her broken central line.

Now, you cry because you can go.

I then I realized in the mist of all this--business--really HIS all HIS Business--in need of Him. It made it all great again. Reminding me, that yes, He is there.

DID I NEED THAT! All day long I prayed for His ordering of my steps--which He did--even when I forgot the beads; it gave me opportunity to reflect--and not reject the moments approaching.

There in the warmth of that room--the pack meeting, MY first ever Scout PACK Meeting--we sang Scout songs--and all that takes place--and I sat there, camera in hand, just being Mom...

David's Mom.

It was a refreshing role.

Is.

Thursday, December 8, 2005 9:51 AM CST

Praise the LORD!

YESTERDAY OLIVIA awoke with YELLOW urine--FLAT belly!

Monday's Christmas choir performance was most heartwrenching from every angle. Driving in the dark to a place never visited before--David had the directions and read them to me--map boy that he is. With Harold, Chris and girls following and Olivia in huge belly mode--so many things uncertain!

Olivia and I briefed before leaving. She understood why we had to go and that she could indeed sit down if she needed to.

Joy to the World--full choir, which is made up of K-5 graders--precious!

12 Days of Christmas--each child having their own part--Olivia didn't sing her first 7 swans a swimming, but after that you can bet--she did--BELTED it out.

Jingle Bells--Wanted to do something different--and so got recorders for the kids showed them very simply how to play Jingle Bells! All but Olivia, she rang the sleigh bells and SANG it--belted it once again! The kid were SO cute!

Friendly Beasts--4 solo parts.

Away in the Manger--solo parts--David sang the opening verse.

Silent Night--Stille Nacht! Keta Jo sang the first verse in German (which all of them know now and are so wanting to sing it!), 2nd verse partially German--3rd verse is 1st verse in English...and then the last verse in English!

All with Miss Ollie playing the guitar--precious!!!

So it went--O sat for Friendly Beasts and Away in the Manger--she just sat right where she would stand! She didn't want to come by me--and stood again for Silent Night.

Wow.

So, nothing on for today or tomorrow!! Yes, Ms. Jo--NOTHING! I cleared it off and GOd did the rest with the prediction of snow--everyone is clearing things--yeah!

Looking forward to Dave's return Friday--hoping the snow won't be a problem.

Sunday, December 4, 2005 5:09 PM CST

December 5th, 2005

There is a sense of relief once I say, no, we can't--not today, maybe another day. But relief is soon passed over to loss. Chronic illness when it really flares can be all about a loss here and there. They begin to add into a mix which can turn into something ugly.

I was really hoping by today Olivia would be turning around, but not yet. The distention and "cold" and well, the UTI are all working their best to keep her (and me) down. We had tickets to see Hans Christian Anderson's _Nightingale_ this morning, but there was no way. I'm so thankful to Chris for taking David--driving here to pick him up and taking him. It breaks my heart that we can't be together--yesterday's choir practice was like that too.

A phone call from Hope this morning helped to talk it out, my concerns, bouncing things off of such a great friend...it just helped. Please keep Natalie in your continued prayers. This week could be very monumental.

So the valley is dark.

Tonight is the Widow's Banquet. I was asked to gather a group of children together specifically for this night--we've been practicing every Wednesday night before AWANA since end of October--and here it is.

I'll be real--and say, it hurts. All of it. I want to hide.

I know my REDEEMER lives.

Just as He lived for Abraham, Isaac and Jacob, Moses, Job and Isaiah--King David in his triumphs and trials, Solomon in all his wisdom; He lived then and is living now.

Pressing closer to the Father, for He is able.

** ** ** ** ~*~ ** ** ** **

Checking Olivia in the middle of the night--she stirred and plainly stated, "George Washington".

It was all I had to not squeeze the history major.

Crazy day, but things were weeded down and out.

Home, on our last night before Daddy heads to IL for peak assignment.

Olivia stayed home from choir dress rehearsal; her belly is back up to huge statis.

David dropped his recorder during "Jingle Bells" and after he gain control again of it, I winked--and there plain as you please did my son WINK back.

God is good.

Keeping it real and on the right stuff.

Prayers for the Big Belly Blues to fade away.

Friday, December 2, 2005 10:20 AM CST

Increasing Zelnorm and keep her hydrated.

Finally we have seen yellow urine! But she is dumping at an alarming rate--she is working on 2 Liters of stool this morning.

It is the shift from total freedom--no bags attached and no IV infusing--to everything added onto an already stressed body which is out of proportion.

Taking her cue and art was out for today and not sure what is on for tomorrow.

I think it is more of Dave and me adjusting than anything.

Nurse Gerry--is Nurse of the year--and all she has done for us could never expressed with justice. I was reminded of our Lord washing the feet of his Disciples as she washed the dried tears from Olivia's face.

After cathing, Olivia stood up and the dams broke. G poured out, then J and Olivia's reference to her two tubes was most endearing, especially when she finally agreed to our taking them out to truly let things flow. "Central line is an UNinvited guest to this"--meaning lets get it OUT Of the way of any leakage! What a girl.

Her weight and height were relatively fine. Hard to weigh her with so much belly, but knowing that she grew is good. She is so out of proportion with her gross distention.

She rode in a wheelchair--which many of our friends do on a daily basis--I could not help but praise God for the throne on wheels. She admitted later she was embarrassed, but clarified it was not embarrassment, but difference.

I told her we are all in this together as I'm different too--I'm a different kind of Mom--and then said she just didn't like that she could not swim. But aha...yes, you do. Take away the half empty and place the half full one, my dear. After we listed all she can and has done--all was well.

As we waited for Dave to bring the van--Olivia and I cruised the CHRISTMAS trees (no political pun intended?)--each year different groups decorate--and we stopped at one not realizing what it was for--until it hit me! It was the TRANSPLANT tree! Livers, Kidneys--we searched for a small bowel but didn't find one--all the precious faces--Olivia commented she wanted a transplant too.

Lord guide us!

But for us adults our brittle hearts take longer to heal.

Thank you so much for the emails, I know many of you--also have girls who are doing and GOING through the same type stuff right now--and are paving the way; I just pray that this season is gone soon.

Lifting the children to the Lord.

Thursday, December 1, 2005 3:53 AM CST

December!

Olivia continues to make crocheted chains everywhere.

We are baffeled by the ups and downs--huge and hard belly and soft and flat--those days are less and less.

Olivia has been in extreme pain throughout the night. She is huge and hard--complaining where her liver is--not a happy thought at all.

Working on joy.

We've been doing extra fluids and usually after a Liter Olivia's urine would run yellow to clear, but it hasn't. It has remained tea colored. I had a friend tell me that it could have something to do with the liver.

I'm not the medically sound person--that is why I have TPNsupport and specific friends to help me through--feeling a bit crumbled. Trying not to OVERwork things--just being aware.

Hope called during hook up and we chatted. I shared with her that we'd studied the "Boston Tea Party" yesterday and with her Bostonian accent commented.

The lights out--and I began to sing--quietly David whispered "Natalie"...

So tomorrow--well, today--actually in a few hours the kids and I will prepare for a day away. We'll swing by Dave's work and he'll drive us all to Cincinnati in his VW--we call it speed racer car. He doesn't speed in it, but looks like you'd want to. (Who knows if he does or not?)

Clinic was moved up from 22nd December to today's December day. So thankful Dave is able to go as well. Much needed.

Would appreciate any prayers sent in regards to wisdom and strenght.

Monday, November 28, 2005 9:25 PM CST

David is back.

His time with Papa is truly a vacation.

Olivia and I were mother and daughter.

She is now making chain stitches in crochet constantly and is thrilled to be THE ONE to teach David.

But her belly is so huge and her urine so dark. She's up and down with dumping, etc. But it IS this disease and really we can hang with it, but then in seaps

Tonight at dance she did her best.

She just wore sweats and a long t-shirt. Her pouch peaking out from the shirt. When we got to the truck she said, "People are not supposed to be able to see other people's poop". "It was so hard to boogie woogie with my tubes hurting, I was afraid when I coughed J was going to pop out." Now again, I stood behind her (we were invited in to watch) and watched her from the back side and saw her in the mirror. This child of God's given gift to me did her best I believe it to be true, but not so sure that her best will make the cut.

It was tiring for me to hear the teacher and another mother (who doesn't even know Olivia) telling ME Olivia is tired.

Olivia accompanied me to the dentist.

There in the chair humbled with my mouth wide open--I began to replay much of the last few years.

I hadn't been to the dentist in 4 years. I remember cancelling my last appointment because we had just brought Olivia home from her major surgery. This is not poor me stuff--just wow, had I hibernated that long?

It takes one time to snap back, but back isn't where I'll snap. I can't begin to express the feeling of loss I felt today--staring at the light which beamed into my mouth--feeling old and old.

When the dentist came in--a beacon of light--and when she said, (as Olivia sat in her chair chain stitching not saying a word) "Mama's got pretty teeth".

How long it has been since I've heard that! My teeth were NOT falling out!

Now although things seemed so bittersweet this day and Olivia's comments from dance class--she is coming out there is no doubt. . .but tonight in bed as she was chain stitching during her care--I suggested that she decorate her tubes--and yes, she now has very celebrated tubes. . .she said that G's should be longer because it is older--the other night stoma was a girl, but pouch a boy, G a girl and J a boy and central line is a girl.

What an imagination.

Fly girl, fly.

Wednesday, November 23, 2005 7:55 AM CST

I wanted to share a poem that a friend wrote with Olivia in mind after the skate night:

I am quite special

As you can see.

There were no mistakes

In the making of me.

If you know how to look

Its my heart you will see.

I am quite special. Can you look? Can you see?

I like to play

Just the same as you.

For me somethings

are hard to do.

When I keep on trying

I grow through and through.

Can we play together? Me and you?

I have real giggles,

Real tears when I cry,

Days are a gift,

You don�t know what�s inside.

At the end of each one

I can say that I tried.

What makes you giggle? What makes you cry?

We all look different

On the outside and in.

We all have our troubles

And struggles within.

We all have our victories

And battles to win.

Isn�t it better when shared with a friend?

S Lyons
2005

That is something that God is teaching us; we need to let go take off our masks of "all is well" with save friends. That can take more energy than anything I know.

Dave and I have been so very blessed by taking a "Bible study/class" in regards to parenting. One thing which S. Lyons from above said--and she says many things is "Dare to be Different". I have always been different is so many ways and Olivia's condition has furthered the cause, but in the context of what SL was speaking is the Difference we want to be and make--being the Light--showing the world Jesus through our lives, our families. It is not us but You Lord kind of mentality. To say this out in the open I'll be ready for the darts with my full armour placed and Standing on the Promises.

I fell like I'm healing from the toll of fear; the battle of what ifs and how comes. It is such a long process and clearly worth taking that step of faith--out of the boat and into my _Lord_ and _Savior's_ Arms.

Olivia looked so pale last night in the choir; maybe time for some iron again. Wishing not so, but I'm sure so. She tried to interrupt while I was directing (big NO NO) and later I asked her what she had wanted to say and she said--Might I suggest that during Away in the Manger those of us who are not singing solos have a chair to sit down?

Tired girl--but still out there doing the stuff!

Able.

We are so very thankful.

Now with the monitor on; Olivia is waking, David is with her, "Olivia, did you have a good nights' sleep?"

Time to get rolling--

Happy Birthday, Dave. We can't wait to have you home with us tonight.

Continued prayers for Hope and Natalie, Zachary and Allison, Maureen. Sean and his parents, Kyle, Kody and all our dear TPNfriends.

Thank you LORD!

Saturday, November 19, 2005 0:10 AM CST

Tender mercies.

Dave was away on business for three nights this week; huge storms beat our side of the country and even warnings of tornados to boot. It seems when such air pressures hit Olivia's bumps whine AIR IN LINE which makes for LONG nights.

Olivia's belly is back at the BIG stage; she says she is fat. She has had two pouch BREAKOUTS in a week. A little down cast at times, but overall hanging tough.

Tonight at our church it was skate night. Time set aside just for K-2 grades. Both David and Olivia took to the floor and didn't want to stop. Olivia had a few falls, David even more since he had on the super duper regular type skates on. Olivia wore the Barbie kind--which you keep your shoes on and just kind of walk around! There was free skate--or ALL skate--then RACES. Oh my. I was NOT prepared for that. Olivia popped right up to race with 4 other Kindergarteners. She went around without falling once and came in 2nd to last--another little fellow wearing the REAL skates was flopping all around behind her--bless HIS heart! I was so proud of her! All the children watching--so BRAVE!

David did the same as Olivia. My heart was so full of deep thankfulness for their outward confidence, yet I was horrified that they were so far behind the others.

But that was not it--it was when Olivia fell and her pouch emptied all over her tights--dress--thankfully DAVE was there and rescued her home.

I was SO taken off guard by this! We have our safe friends; many here at church within our homeschooling community--neighbors, but to be in front of all those people--I just didn't want anyone to know.

It made me ache for Grandparents who unconditionally love, Aunts and Uncles, Cousins...to be with family.

So thankful Thanksgiving is around the corner. Looking forward to Christmas at home and early January traveling to St Louis for a short week. There David and Olivia are David and Olivia. Not...anyone less--or different.

BUT--in the MIDST of all this. . . worship music was playing and I KNEW that GOD was right there with me--growing me another step along this way. OUCH, but yet,
AWEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEESOME!

Great week; can't deny it. Won't let one incident spoil it especially since Olivia snapped back--it is we who are old and brittle who tend to take a bit of time to get it back in order.

Order my steps, Oh Lord.

Labs FINALLY DRAWN. What a fiasco, but it is over.

SCHOOL:

We are JAMMING! Olivia is really playing the piano now--SILENT NIGHT! She is working on ADDING numbers already! She is SO cute to watch--and is sounding out her words too, although she finds it to be SOOOOOOOOOOOOOOO "hard" at times, but I think it has a lot to do with HOW she is "feeling" too. She loves history and Bible reading time. We are working our way through Genesis and we are up to George Washington's life right now. SHE LOVES to write her letters and words and make "math homework" for DADDY!

David has grown a LOT. HE heard the message on Wednesday night and has really stepped it up in the servant mode. He is whizzing in math, history, science, reading, geography, music, art, but boy oh boy--spelling is like pulling TEETH! But it is SO painful for him.

We've been talking a lot about Olivia's care. It is time to take another step. She is now taking water out of balloon/removing/ overnight cath. Going to have her start really working on emptying her own pouch. Hard for little hands, but I think on good days--she can. And will.

Extra love and prayers for Sean, Natalie, Zach, Samuel, Patrick, Colyn, Kyle, Kody, and all our other precious TPNfamily.

To Jesus.

Monday, November 14, 2005 2:44 PM CST

Monday!?
Oh, yes...I am sure it is!

Late start today; its all right, yes it is.

Olivia lost her FIRST TOOTH--how long it seems she's been waiting and I being away knowing that it would happen while away...told her to NOT wiggle it, but at 11 PM Saturday night my daughter called to tell me the news.

Yeah, no book work, but Olivia did make a Jasper Johns type 100 chart and David a 6 foot growth chart with pen and ink!

David made pancakes doubling the recipe with no help, doing it all even cleaning up with NO help!

They are playing with all sorts of sizes of dolls with the theme of the British are COMING.

Time for dance and Scouts--then cozy.

Its a rainy Monday!

Friday, November 11, 2005 8:42 AM CST

Veterans Day!

Last night as we all piled ONTO Olivia's bed, David had a book out and found a photo of Colin Powell. There he noted that Powell had earned a purple heart all from his studying and reproducing the "decorations" from the encyclopedia. Olivia was eating a cup of peaches and looking at one of David's other books he had checked out. "Oh, David look at this airplane and this". Dave and I in the other room smiling. They are such best friends.

Last night was hard. No other words to describe it. Dave at work late with projects on the block and Olivia's belly was so distended last night.

The kids and I watched a video nicely done about Squanto. It was illustrated by paintings, not animated and the story line captured all of our attention. Brought a new sense of perspective which was needed.

When Olivia doesn't receive LIPIDS we've been running fluids on the big BIG belly nights and it seems to help; part of me (that no good flesh part) wants to dwell on this and fear for the future, but God has placed a new sense of faith and we really are taking it day by day.

Yesterday the children and I had lunch at a friend's house. There I was treated to a delicious salad and fish stew. The children played as we talked and shared more of our lives. Blessings. We hit Meijer on the way home as tomorrow AM I'll be heading out bright and early to Brown Co. with another friend. Hoping to get my Christmas shopping on the way, enjoy some down time, practice crocheting and reflect on the Lord.

A friend is teaching me how to crochet--reteaching--and as my fingers work I can't help but to pretend they are my Grandmother's--I giggle to myself as to how silly I can be.

Dave will take David and Olivia out on a Scouting for FOOD event. Hoping all will be laid out for them and it'll be a relaxing day and night as Sunday Dave will be heading out for a three night business trip.

We also learned that he'll be on a peak assignment through December! OH BOY! At first I was UP for the challenge, then in thinking it over--whew, but now, I'm ready to re-evaluate it all again. The only concern--and this will be plainly stated and given out to all those who have been helping and working with me.

It is so comforting to know that in DOING HIS stuff, will, work--it IS all His. Not mine--if I can't be there; it'll still move forward--still reaching others with or without my being there.

Oh HOW I love JESUS
OH HOW I love JESUS
OH HOW I LOVE JESUS

because He first loved me.

God had lighted the fire within me--not the same as the first when I came to Him but now with aged wisdom and power, love and a sound mind.

To Jesus!

Wednesday, November 9, 2005 10:03 PM CST

There are just some days you hand over; today was amazing.

Kim called saying she needed to get to the hospital--it was a great day for a baby to be born, but he just wasn't ready. David, Olivia and I hung at the Potts' home with their 3 boys; I was so proud of how David was a leader. After putting Sammy and Joey to naps I invited David Potts to our quiet time. There David Peter worked on his decorations from the encyclopedia from wars, Olivia drew and David Potts cut and drew--I closed my eyes for the day was just starting.

It was a false alarm. We were back home by 3 PM; one hour before Ollie, but she called to say she had a dentist appt and would see us at church. Ollie is a study of pure helping handedness. She comes on Wednesdays after school and I (haven't in a while) give her flute lessons. She has been helping me with the Christmas Choir so as soon as she gets here we hit the road to Christmas Choir.

I got a love note from her tonight; what a blessing.

So we putter down the hill conserving gas because we had NONE--and realizing we had FORGOTTEN our canned veggies we BOUGHT 2 weeks ago in HOPES of being prepared for canned VEGGIE night. . .I grabbed cans of veggies while paying for gas. A quick $5 didn't get me off the screaming NO GAS LIGHT, had to throw that in for my parents.

Meanwhile; Olivia has been quiet. Puts on her bags and poof--she has a mini explosion of leakage.

We pick up KJ, ML and we have a van full minus our usual Ollie--and singing Silent Night in German! Memories.

Out of the van and Olivia falls harder than hard on the concrete. Both knees and hands are beaten up. She's already coping with a SWOLLEN BELLY--and then this.

Christmas Choir; she seemed fine--content that I had said to her lets work on recorder next year and she'll be our sleighbell ringer--and can sing while the rest play--she SO loves JINGLE BELLS--she literally has sung it ALL year round.

And after CC she starts to dance out of AWANA again. Knowing that Dave truly wanted to get what was meant for him tonight; her leader and Olivia start to talk it through--and yes, I bribed my daughter with a ROOTBEER FLOAT...to stay...and she did. And she even came to me with a full pouch. God loves her. I know He does. I know He looks at her and just smiles at her comical ways and serious thoughts and tender times.

Pastor Ken asked who wanted to pray; David speed hand raiser was chosen. I had no idea when I walked into the beginning of AWANA WHY David was IN FRONT with Ken. Looking to Chris, my eyes and ears--told me.

He said a precious prayer.

Lots of neat things going on within that boy.

Council Time with the kiddos was awe inspiring. We worshiped together; as they leave we do the high fives, hand shakes, hugs. In a darkened world...

On and on...people entering my life here on a local level; sharpening me in the LORD.

Over a month still before Olivia's clinic appointment. She's been the PED more in the last 2 months than in a whole year. Couple that with the central line repair; it still feels like a year since we were sitting in the room talking with Nurse G and Dr. K.

In talking with a friend on the phone--one of those sharpening ones; and she asking about Olivia...and I think back to her distention of the night, hurting knees. . .

saying...I don't know what I'll do...meaning--we've given her meds, she'll be hooked up to TPN and lipids, over night cathed placed, etc. But how can we get that tummy down?

Pray. You can pray.

Ah yes.

Pray.

As always, this journal straight from my heart to the tips of my fingers; not checking spelling, grammar, etc...in true journal fashion.

Keeping our prayers for Natalie; no word from Hope today, concerned. Concerns.

If you see me out; I'll be wearing my silver chain bracelet from my mom, my Autism bracelet and MITO bracelet and my silver bangle which reminds me I'm bought with a price.

www.caringbridge.org/ma/natalie

Yesterday we spent with my Dad; he went to piano lessons. On our way home we detoured. He took us to see the mini horses; what a grandpa thing to do. As we winded around Skyline Drive he spoke of times passed and there my children experienced their Grandpa sharing as he did for so many years as a GREAT teacher. . .sitting on his desk. . .he and I going over our memories setting things straight. I love you, Dad. Thank you for being a great Dad, Grandpa and Friend.

Thursday, November 3, 2005 8:31 AM CST

Well, Tuesday was a big change in plans--this whole week has been.

Funny, when Olivia is "sick" with Pseudo Obstruction we try so hard to maintain as normal of life as possible so when something like Strep Throat hits we HAVE to stop and regroup. I'm not used to that. This normal kid stuff is the pits.

The new PEDS office is a palace. If there ever was a Ped who has worked hard and deserves such an environment--it is Dr. Nassim and her associates. It is nothing but WHEELCHAIR accessible--very in tune with special kids. She's her humble self saying how blessed she is to be working with her staff--and Nurse Beverly--the FIRST nurse ever for the DEKOLD family--runs over and gives me a hug. They truly appreciate us and what we are doing or not doing. So thankful for such a relationship.

BUT, Olivia hid in the corner after the swab--and with the news of positive knew that yet ANOTHER SHOT was in order.

Took 3 of us. David by the window cringing, I over her head and although in the scheme of things in life right now, nothing, but very much something to Olivia. We all cried when we were left alone, rocking.

She feels SO much better, but we all have been brought down a few notches. David STILL has his cough and I am gaining one, Daddy is exhausted and hoping to catch up at work tonight. Olivia looks good. We've been running fluids with her TPN to help flush out her system.

The days have been absolutely beautiful. Today I hope to have the kiddos draw the front of our house as their art teacher requires it (wink) for next class. I'm thinking of taking a new approach (my eclectic style of teaching) for November and December in school. Continuing on with Olivia's "book" work, but an educational game a day with both. David contining on with spelling (as my mom pointed out to me, capital--I knew capitol meant only the dome--I remember that from 7th grade English class--when I taught it:), and reading and thinking, but working on Sci Fair and writing his first ever book. And both of their choir duties for December will require extra work, piano and recorder--so need to slow down the "book" end and enjoy the hands on stuff.

When Grandma comes in January we'll have one major HOUSE project and she'll have "school" duties with each child. This will give a new approach as well. I'm really excited for a change. I love the idea of year round school as well as it goes along with the philosophy that LIFE is learning. Nice to take a different approach at times to keep things fresh.

David will spend time with Papa this weekend which is always another level of learning. With my Dad he has learned so much about maps, to mention only one. Those of you who know, Dad is a retired elementary school teacher who I had the privilege many times to observe. He was why I wanted to become a teacher. He'd sit on the edge of his desk and tell his stories, make them read and think, do their math, retell their stories, read, and write. Did I say read? :)

But with all good things--I want D and O to KNOW how, but to LOVE TO most importantly.

Natalie was NOT doing well last night. Bleeding out of her mouth, she is in a drug induced coma and had tears coming out of her closed eyes. Heartwrenching. We lift the whole Eacreatt family to the Lord constantly.

Our other friends have things happening in their lives, or coming up...we just want to lift Kyle, Zach, Sean and Heidi Coleman especially to the Lord.

Last night at AWANA a young teen was being "doctored" from a bloody nose. Instinctually I found myself asking if the boy was all right--I'm thinking bleeding disorder--and ready to diagnose him...brother. Different perspectives, then I was found in my heart thinking of Derick, Sean, Kyle, Natalie, Zach, Patrick, and my Olivia who had to be at home.

May November be a renewing month for so many.

I lift my heart and my cry to you oh Lord Jesus, maker of this world and lover of each child.

Tuesday, November 1, 2005 2:01 AM CST

Miss Olivia has had a low grade for over 24 hours. She complains that when she yawns or swallows her throat hurts. She asked, do I need to swallow when I sleep?

She had a lot of plumbing sounds tonight. Its when I can hear fluid moving around her bowel--like a pipe with water. It can be a dripping sound to almost a flushing through--so much stuff trapped in there. How strange.

So went ahead and canceled Tuesday; piano, no b-day party and possibly no dance again for Olivia.

The pump has beeped all night, therefore I am here although I did start slumbering at 9:30PM and Dave did pump duty.

Not much more to say, just praying that Olivia snaps out of this; I'm not really up for a mini trip to Cincinnati although the stinker did say that she didn't want to go as she was not looking forward to getting blood drawn, but she DID want ROOM SERVICE--she LOVES CCHMC's food.

I did talk with Hope last night: Natalie is still in the woods and struggling.

Continued prayers for Hope's family, Donna's family, Anne's family, Heidi's family, and the Coleman Family.

Saturday, October 29, 2005 1:43 PM CDT

Saturday afternoon.

Tonight we are heading over to a fellow AWANA leader's home for fellowship. Dave and I are frantically working on household chores--Olivia with Daddy as he picks up our long lost sick vacuum cleaner. I hope it has decided to work.

But aside from all that normal stuff life has been interesting.

We are in high prayer mode for Hope's daughter Natalie and their whole family--as it is a family affair when one is sick; Natalie is in need.

I've had a few conversations with Hope; I cherish her.

She has taught me grace and perserverance--leading by example.

Friday the kids and I (and cell phone--waiting to hear anything from Hope) went to an IUS (local college) series--the first. It was the Bernstein Bears. And afterwards to lunch and we headed out to Corydon with Sci Club/Art friends.

Corydon was Indiana's first capitol and is a quaint place. There is a small Christian bookstore/homeschooling consignment shop/drama lessons/cafe/ thing going on there. We got to see a very innovative drama about Daniel's doings with the Lions. Seven or so children--mostly teens--some of the best acting I've seen out of this age group. WE stayed on afterwards with children playing games, making new friends; they asked if I'd play my flute--they have musicians on Saturday nights and lots of other neat musical--artist things.

The drive was beautiful. One of the prettiest Falls I've seen, although we Midwesterners probably say that each year; I would miss these colors so. It IS my season.

David and Olivia went out to feed this morning. Our back blacktop if FILLED (even with my sweeping) fallen acorns. It has been a remarkable harvest. Olivia slipped and hit her upper chin and a scratch on her nose as well. No tears were heard and David told me out of concern when she had gone to put on a princess bandage. I went to find her and she told me, I slipped on an acorn hit my lip or chin on a rock then had a piece of acorn in my mouth!

Oh my! So she is wearing a bandage with some princess horizontally covering her chin.

She looks like she cut herself shaving.

We hit the Japanesse restaurant last night--the four of us. David had an asthmatic attack, but as soon as our chef began his show David was in awe. Both children did so well yesterday in respects of respecting others when spoken to--etc. Afterwards, David searched the restaurant to give chef his tip. $3 of his OWN money.

Kids are determined to pay their way. All right!

Oh please, please--pray for Natalie. And many other friends--there is some big stuff looming for dear ones.

Donna's, Anne's, Heidi's. . . to mention but a few.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Thank you so for all your kind comments. I hardly ever mention this, but we are very grateful for those who love and pray with us and for us.

May you have a blessed day.

Monday, October 24, 2005 8:44 PM CDT

Tuesday! All is as planned; piano and flushots--Daddy home.

With the darkened winter sky fall's full array of color seemed to be announcing its importance; selected trees electrfying the wooded hills--no doubt about it; we saw a show.

With the ER packed--I withdrew from the hopes of an in and out procedure. How quickly I forgot our prayer prior to leaving the truck!

400! Only TEN minutes of waiting and we were off to TRIAGE and there Olivia withdrew and quiet but safely within our mother daughter bubble we giggled and talked as we waited. I reminded her--someone will say you have beautiful eyes--or eyelashes--and what will you say?

Off to the trauma section of ER with no other available rooms--we met a new friend, Nurse S. She was full of zeal for her work and mentioned prayer--I believe she prays as she works. We discussed things and as she left to order the repair kit she said--My Birthday is in April too. . .

Not only a good nurse, a tender hearted one--but wait--there is not such thing as a good nurse without a tender heart.

I got her "story"--she hugged Olivia and told her she would keep her in her prayers--leaning back and with a twinkle in her eye said. . .isn't that what is is all about? And with a wink--I felt that God was directly talking to me.

Listening to preachers on the way home--the resounding theme. He wants all of me--not a bit--All. Prayer---speaking to Him.

I feel the deepening happening. . .

It is more than a broken central line. . .it is more.

In case you haven�t heard, Olivia�s C-Line ruptured tonight. The inner lumen had failed and it would blow up like a little balloon when we would flush it. I had arranged to take off work tomorrow and take her up there for the repair. Well, it didn�t make it.

Sheila called ma at 4:45 this afternoon and we were off to the races. We met enroute. I took David and She took O. They got there about 7:00. She called me at 7:30 while they were sitting in the waiting room for E.R. I heard them call their number ad now I just heard back from her a few minutes ago. They are heading home.

Man, do we love Cincy Children�s.

They fixed the line and it appears to be flushing fine. (No clotting.) Looks like we are good to go. They also met a friend of Nurse G, whom we love (truthfully, they are all like family to us.) and O had an excellent C-Line nurse. Truly a saint.

First, thanks to a great God who watches us and loves us. I see God all around us in our life and in the life of our children. We do ask for extra prayers of protection that no infection got into the line while it was open, but even as I write that and ask for it, I know it is already been granted.

Tomorrow, flu shots and piano lessons. It�ll be a great day.

Love to you all.

Daddy-O.

Monday, October 24, 2005 8:44 PM CDT

Wednesday, October 19, 2005 8:41 AM CDT

The days pass so quickly, don't they? I'm trying to be in the moment as much as possible.

David has had an asthmatic flare and now into a pretty good cough, but other than that is feeling fine.

Olivia continues to be distended; her tubes are red from leakage. Yesterday she hit the wall about 30 minutes before we had to be at church for pictures. It was one of those heart wrenching moments. She asked if she could wear her bags for the picture, she had leakage on her dress and really looked whipped. It was interesting to see the expressions on the folks' faces with this little girl droopy and with tubes coming out from under her dress.

The photographer was awesome. I hated the whole idea but during it I had a great time, Dave and I giggled through his prompting and David and Olivia really doing a great job.

Daddy took Olivia home as I finished up the ordering of pictures. And then took David for ice cream--and we called Auntie Kim and Cousin Carolyn for their birthday.

After the slap of reality of Olivia not feeling well--the kind when it is hard to hide, but she pulled it out with flying colors. The type of "not feeling" well, that others point out to her--
"Oh, someone doesn't feel well tonight" sort of thing.

So after this slap I called my dears in California. And hearing the exuberance in Kim's voice, the celebratory tone about her daughter's birthday--oh yes, one she shares as it is her own. I could hear Carolyn in the background with her Nana Shirley--and David and I sitting in the dark van--his eating ice cream--and how I realized how far--how big as my brother puts it half a continent really is.

Earlier that day the kids and I had an early lunch at Mrs. Robin's. She and I had a chance to talk over lunch before piano lessons. I'm 42 and stil trying to figure out the balance of life. How much do I do for others outside my home and how much do my children NEED of that--it was nice to have a talk face to face; it was the beginning of the tone of the day--Dave, Heidi and Hope, thank you for listening and giving good direction.

Olivia is reading music. She sight read a piano piece with 3 different notes! She has many leaves in her leaf book and working on a pumpkin pamphlet as tomorrow we go to HUBERS a family owned and operated farm. David is thriving in piano and plowing through school--amazing stuff.

Thursday, October 13, 2005 3:24 PM CDT

Olivia still has her little girl voice, you know, the textured voice of almost a baby voice. Her face at times is so lean and resembles that of a young girl, but this morning she had that look of a little girl--concerned, no, flat out scared.

It was Kindershot day. We met with David's nurse--who follows him at the PED's office in regards to his asthma. Filling out the chart on her development; David was sure to encourage her and was trying to keep her mind OFF of the fact she was soon to be given SHOTS. Hearing test fine, but eye--she needs to see the eye doctor. She is having problems there. All went well and it was a blessing to really think that she's not had UTIs or anything MAJOR going on.

Yes, the ups and downs of tube care, catheter care, pouch and ostomy, cathing and doing all the ordering, TPNing, all of it, but really in the scheme of things she is doing great.

I've been given those short little glimpses of her babyhood-toddlerhood and now past preschool into Kinderhood--her little hands working the pencil and her eyes so thoughtful when telling her side.

On the developmental chart: What is a ball?--"a round sphere" and what do you do when you are cold? "sit on the vent"--I love it.

TEAL: Olivia loves you and talks about you EVERY day--any time she makes anything she puts it in the box we are making for you. You are such a sweet girl.

Tuesday, October 11, 2005 9:48 PM CDT

While Olivia had her 15 minutes with Mrs. Robin, David and I searched for textures for art class. Rubbing our crayons over the paper with new patterns arising.

Then Olivia and I explored the street for textures and she went into a British accent of sorts listing the reasons why she loves winter. Wearing boots, playing in the snow, going skiing, sledding, snow, snow, snow.

Today was filled with textures and collecting leaves, piano lessons, Origami! It was time to buy supplies for my students and David saw the origami book and paper. He and Olivia dove into it as soon as we reached home.

Olivia loved her time with Aunt Becca here; oh yes, David too. They rode bikes we ran--they worked in the big room--we cooked.

Olivia awoke with a very flat belly, but tonight it is full as a tick, tight as a drum--we'll see what that means tomorrow.

Or the next?

God is IN control.

Monday, October 10, 2005 8:29 AM CDT

All SCOUT material copied and ready for tonight, the 5 minute warning has been given and listening the kiddos they are already cleaning up--not waiting to be told again! YEAH!

Saturday was SUCH a blessing of a day. Harvest Homecoming is a BIG deal in a little town like New Albany, Indiana. Last Saturday was sat back and enjoyed the parade, rising each time the American flag passed, and this Saturday Olivia and her friends danced in the coolness of the morning! How cute. Olivia LOOKED cold, A and B hamming it up--it was really precious!

Off to explore with our friends the Festival and then OFF to a birthday party at the bowling alley for David. Our family and another ended up bowling--then hitting the Festival again! How fun! The highlight was the Italian restaurant which was very authentic where we ate--escaping the festival evening crowd. I'd wanted to visit this place; it was well worth it!

LONG day, good day, Olivia holding up and enjoying it--all of us.

Now onto a new week. The 5 minutes are up--David is already getting his breakfast, time to unhook Olivia and start a very slow paced day of schooling. . .

at home!

YEAH!

Saturday, October 8, 2005 0:48 AM CDT

My family is home.

It was a homecoming like none other--my heart so willing and ready to have them here, truly.

Olivia's belly is huge. Now, I can look at it and allow fear to grip my heart and wrap itself around and smother all other thoughts, even making an almost gasp of a prayer OR the idea occured to me, maybe this is just how her body is supposed to look like at times--and with that it keeps me faithfully talking to God, trusting in His Way of showing us as to HOW to care for Olivia. She is not due back to clinic until December 22nd and I can just hear Nurse G if I were to email--or call. I know it is "just" Pseudo Obstruction--what she is experiencing how her body is formed on the inside reflects on the outer.

She recited two of her verses tonight and the SPARK talking rules. Reviewed over our NT Book song and she did well--reading out of the HUGE family Bible which has paintings from the Old Masters. . .there I was sandwiched between two bodies which at one time were inside of mine.

The quickness of their growth has hit me hard lately. As I tooled around the Meijer picking up this and that I heard a Mama pushing her young toddler in the cart--how I loved those days--with their eyes bigger than ever brightly absorbing all the textures, colors and LIFE within a common store.

Now their eyes widen with stories read from an American history book telling of the 13 Colonies, David is whizzing through his 2nd grade math and I found a neat mental math book I'll begin using with both. David has a huge Spelling TEST this week covering 7 weeks of words; Olivia has her first set of words, fat, fan, bat, ban, mat, man, cat, can, Olivia and Jesus.

I felt the need to start over in our study of God's Word. And turns out in Sunday School they are talking about Noah! We are now into Abram, having read about the Tower of Babel. We'll make a time line this week before we go too much farther.

So tomorrow, Saturday--Olivia and her two friends, Amanda and Breanna will be on stage ALONE dancing at the Harvest Homecoming. When did this HAPPEN? I can remember few years ago going to watch our neighbor's daughter dance there. How fast!

Thank you to Grandma and Grandpa, Aunties and Uncles who loved all over David and Olivia. They had a blast and love all their treasures. More on THAT...later!

Wednesday, October 5, 2005 2:04 AM CDT

If you could choose any place in the world--to visit ANYONE, Olivia--who would it be?

I want to go to Grandma and Grandpa's house.

Smile.

That was a couple of weeks ago and tonight--well, this morning Dave and the kids are visiting our St Louis family.

My heart has ached since I drove away from them having the first of a lot of meetings--gatherings for the day.

Things are different here.

I've had to step back from online support "groups", but am in contact with personal friends via email and occasional phone calls. The group scene became too much to keep up for now. CB sites make it possible to check--and if no update an email--personally addressed works better for me.

Strange--sometimes I feel like I'm floating out there by myself, but not really. I know its time to let God take over in some major areas of my life--IF--I want HIM to take over major areas in David and Olivia's life.

Dave and I are are taking a Bible study together on Sunday nights. It has been an amazing journey.

Monday the children and I hit school after breakfast for David and Olivia is unhooked. She doesn't require breakfast most days, unless we are doing eggs or pancakes.

Once a month Monday we hit Sci Club.

Monday evenings are filled with dance for Olivia and Dave and David off to Tiger Scouts. Olivia's last few classes she has been grossly distended but really coping well. Her teacher even has said she has been a "rascal". O knows now that THAT is not a good reputation overall. She was being silly and the teacher was RELIEVED that she was feeling well enough to actually dance and perform in other ways. Hoping our little talk has helped!

Tuesdays are piano. Still utterly blessed by Mrs. Robin and all she is teaching both of the children. When asked, David says, "OH YEAH"! It is fun to sit out on her porch swing and hear her WHOOPING it up over their progress.

I have got to get the camera out and get photos of David in his Scout uniform. Adorable.

In a month I'll redraw Olivia's labs. Feels strange to have not been back to clinic. I grow anxious some days and others just trying to go with the flow.

More than anything I'm really trying to seek God's Word for leading in comfort, sound mind, power, and love for my family.

It has been just incredible all that He has been showing us all.

Wednesday, September 28, 2005 9:54 PM CDT

Many thoughts and prayers going out to the Coleman Family tonight.

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

Today. This day. After last night I could not stop thinking how incredible Olivia's capacity of adoration for a clumsy Mama and how much I'm growing increasingly concerned over the need for her J-bag to be attached all the time. It would not be nearly as heart clenching if Olivia weren't so bent on NOT wearing it around others. She insists she is embarrassed and I believe her.

Today was an out to eat day, but she was not up for it so laid her head on my lap. Then sat up staring at David's sweet potato and nibbled on a roll. I wanted to enter her heart's window but it was not the time nor space.

But back up--to piano lessons. She had a great time; she loves Mrs. Robin and I can't begin to tell you how full of thankfulness I am that she is ABLE to have students in piano and my children can benefit from her wisdom on not just piano, but MUSIC and such a GODLY example--in a very real way. David is soaring and Robin also sees what I see in him--I like that I have the confirmation from another teacher type.

After lunch we hit the car/van wash--always a nice break and then I swept the van.

But back up after piano lessons--LIBRARY. There David picked up/out about 10 chapter books and more science related books for weather. HE HAD HIS NOSE IN BOOKS THE WHOLE WAY HOME!

Olivia's natural state is to be in a book. So thankful.

Home and a big BIG SHOWER WASH. Olivia was done. Big day.

Off to Christmas CHOIR practice--this is gonna be lots of fun--working with K-3 graders--teaching them songs I grew up with and introducing the recorder to them--and on and on...EXCITED!

Daddy got Olivia before AWANA. She wanted home and needed it, something other than AWANA. Dave took her bike riding--pray it helps her.

David and I love AWANA.

Olivia isn't sold yet; I don't think. And I'm finding out that...THAT is all right. Yes, it is.

Wednesday, September 28, 2005 8:02 AM CDT

This early morning I awoke--with my glasses misplaced, as I had left them by David's bed. He and I had a "talk" last night about MAKE A WISH.

I realized I hadn't put Olivia's Jbag back on--she needs it everyday--almost 24/7 now as there is so much pressure. Dance class was so hard for her--her stoma was buzzing as we drove down the hill.

Knowing I'd have to empty her pouch as that too is another thing--not since early August have we seen digestion/absorption.

She was awake there at 3:30 AM and I placed the urinal off to the side but picked it up incorrectly (no glasses) and spilled 1/4 of a Liter of STOOL all over my baby.

"GROSS"

Forgiving and with her sense of humor--when I came back with everything I needed to get her cleaned up to last until a shower in the AM--she giggled as she retold the story. How she LOVES to retell stories...

She'll no doubt add it to her long list of Mommy's sillinesses.

Oh Olivia, So proud of you--

In the dark of night...
Your LIGHT SHINES!

Sunday, September 25, 2005 10:25 PM CDT

September 25! MY BIRTHDAY!

In the scheme of things it was just like any other day. Although I was not home much today--I loved my birthday songs from family and friends--and e cards too, thank you!

I get to say that I'm 42 now.

This past week was a blur and the weekend away from Dave and David was a bit of a punctuation of an exclamation point. The scouting camping experience was grand, BeeBee (or is it BB?) gun, archery, fishing, hiking, campfires, tents, all of it. I cuddled with David to hear his version while Dave finished tucking Olivia.

Olivia and I had a very sweet (too short) visit with Papa. Saturday night we headed to Versailles for their Pumpkin Festival. It had quieted down and I told Olivia one ride--she chose the FERRIS WHEEL! There we were almost as high as the clock on the TOWN SQUARE's CLOCK TOWER! What fun--all smiles she was. The whole weekend she was a bit reserved...without David.

Dad and I drove around a bit prior as Olivia had fallen asleep. Thank you, Dad for just driving and talking and looking at things the way you do. I love you.

After Olivia was hooked up and asleep I got out Dad's Indiana Gazetteer--what FUN--then ALASKA'S! WOW! I told David that Papa and I had looked up on his gazetteer where he and Daddy were camping. David smiled and mumbled something about, "I knew you would". Papa had told me his last trip up North a few weekends ago when he took David that DAVID had his nose in the gazetteer the whole trip!

MAPS!

Olivia had an amazing amount of Jtube drainage--pressure this weekend. Dad and I were wondering if it had anything to do with all the storms. The ride Friday night was nothing but an electrial show with a deluge. Olivia was as quiet as could be--and the roosters in the back of the truck wetter than they'd ever been.

Lots of green bile too, but no pain and she keeps on eating--nibbling--fascinated by food.

Ah--roosters are rooming or should I say penning with the guineas. Red was obsessed by the other cocks and Mr. Penny just happy to be out of the raccoon trap/cage. Guineas are so oblivious to everything I think they all will be just fine.

It is awfully quiet here, that is for sure.

On to Monday. . .

(Olivia counted to 100 with only 1 help 2x)
So proud of you Ladybug, Girlie Gum, BOOBUMBEE!

Sunday, September 25, 2005 10:25 PM CDT

Friday, September 23, 2005 7:01 AM CDT

Natalie is home. www.caringbridge.org/ma/natalie

And the hurricane is coming--again. David is most concerned for Alex. (my cousin's son)

The weekend has arrived. David's first camping as a Scout. He is in a full blown asthma flare, but other than that he can barely contain himself. We saw the PED yesterday to make sure his red raw throat was what I thought it to be and not strep. The Ped them gave us a couple of recipes for fun campfire goodies.

Olivia has been all right, yesterday had a great day, but with having Pizza King yesterday that seemed to blow her UP again. Too bad. I was blessed to see the Potts Family.

DAVE IS BACK! I missed him more this time, not for his helping hands but as my husband.

Our school days have been great. After realizing we get to the table at different times each day (the beauty of it all) depending on what we've done the night before--we can sleep in or get up, etc. Once we sit down we work until we get it all completed. During our car time we do our verbal stuff so that helps break things up into parts too.

Both are doing a great job. All of the work has been added this week, so I laid off reading history, but will get back into that next week.

Wednesday I did read a book on John Muir. He was very instrumental in Yosemite becoming a National Park. We read his whole life. Then that night at church a gentleman spoke about his and his friends' hiking trip to California. David was engaged and afterwards saw him telling Mr. M about his trip to California. Add in the Scouting this weekend--it was such a neat mini unit study!

Olivia and I will pack up the TWO roosters and spend two nights at Papa's house. The crowing isn't as quaint here--I never enjoyed rooster crowing, geese honking or duck quacking in the early morning as a kid--and STILL don't! My poor canary would be scolded for waking me in the early morning as well.

Time to start a big day.

Praying to be His Light and Salt everywhere we go.

Thursday, September 15, 2005 7:55 AM CDT

Prayers for our TPNsupport family.

Especially the Colemans as their daughter Heather is tired.

www.caringbridge.org/ma/heather

Please keep Hope's Natalie and their WHOLE family in prayer.

www.caringbridge.org/ma/natalie

*****

Last Spring I felt ready for this new school year--making plans for art, and other activities, choosing the right curriculum and now it is here I can't seem to get the groove. Feel like I'm chasing my tail, but one thing which has helped is to not overly teacherize the schooling experience at home. Both children are making great strides not just in school work, but in heart work--which is most important.

Our field trip to Deam Lake was worth the time away from our "home" schooling. There a seasonal naturalist took the time to come out special for our group. I stood back and listened to him talk to a few folks while we were finishing lunch. He and I got to talk prior to his talk and right away I knew he would be a great resource for not only the HnH group, but also, maybe Scouts and just our family in general. I told him about (of course I would:) my uncle Bill and boy did his EYES grow! He wanted to hear as much as I could tell then I spoke of my Grandmother's cousin, Marietta--two very special people in my family who I've had the priviledge to glean from their knowledge and zeal for those things natural.

We lined up took a very short hike, but stopped and observed much from insects to turkey feathers and nests, trees, bushes, wildflowers, bullfrogs. David and Olivia recognized certain flowers from either Papa's our our hill, etc. I had to hold my tongue and wait making sure no one was going to answer. I learned a bit more as well--I know David and Olivia did too.

Off to home to walk our neighbor's dog, give Ollie a flute lesson and work on the Christmas Choir stuff, then to church...home.

HOME for today--Mrs. Darla is coming to help me dig out and ready things for our Southern families or a yard sale.

May you twinkle with God's Love and Light today.

Wednesday, September 14, 2005 6:26 AM CDT

Olivia is still teetering on the big belly season. There are moments I think she's heading back into flat belly, but those are far and few between. The key is no pain and she is able to maintain her level of activity and learning. She does have evening pain, usually after eating and then lying down.

Yesterday was a full day--piano then lunch with friends then over to the library. There I found a book about Oglethorpe who we had just read about in our history. The kids were so excited--and after reading about the the Penal Colony, Georgia and reviewing and asking questions Olivia called him Oglethorax. Silly girl. But I did find two wonderful books about the Native Americans--and couple that with the neat book sent by her Tia and Tio in New Mexico she is raring to go.

Another book I found was beadwork by the Indians. Monday I needed to sew David's boyscout patches and I invited Olivia to help me pick out the threads. I brought up beads and an embroidery circle I had bought on sale a while back for the kids to use. We stretched some fabric over it and I taught her how to thread a needle and she went for it! She had 20 beads nicely sewn. She is very good with her nimble fingers.

When I got home a slew of phone calls poured. Our neighbor is going out of town and had asked us to watch their "Bubby" dog. He is white and grey and looks like a dustmop but full of FUN energy--David and Olivia LOVE him. I just am all anxious about the alarm system.

Our van is still not working right; it has taken a lot of energy, time and soon money to figure out. Last night Mr Mir helped Dave get the rental car and van here. So thankful the kids and I didn't have to do that.

So today is our field trip to Deam's Lake where we'll have a naturalist identifying plants--etc. We are to pick up two friends as well. Take a packed lunch--but it is drizzling now so wondering if its a go.

We are so blessed by the homeschooling group here. My prayer has been answered with the sense of community which really started last year by teaching art. And couple that with church and now again teaching art, SCI club and field trips as well.

The library was filled with homeschoolers! GREAT!

Also, the Nscalers were there. David spent a good 2 hours going around and around watching the trains, talking with the hobbiests--and I sharing my stories from my childhood to adulthood about the mode of transportation. Made me miss my Dad terribly. When I told them of the TRIP Dad had won--they ALL knew what I was talking about--neat.

The kids are still in FULL snore mode--sleep my children--rest--grow and grow some more.

For the fullness of life--I give it to you GOD!

Tuesday, September 13, 2005 7:37 AM CDT

I can hear Olivia's pump via the monitor--it is ramping down which means my sleeping girl could be unhooked in less than an hour, but will probably need longer time to sleep.

She made it to dance, but she had tears prior--she was so frustrated with her tubes not being where she wanted them to be. Her belly so swollen and legs and arms so thin in comparison. The dance teacher said she seemed tired. Yes, she's not been 100% at all. It is the rollercoaster ride that is so baffling.

Scouts was incredible. Seeing David in his uniform--SO INTO it--PRECIOUS for sure.

Praying for a new day--better one.

Sunday, September 11, 2005 0:37 AM CDT

Olivia is huge.

If you've been reading this ride for some time now you'll remember the big belly days.

She is big.

Hurting off and on too.

We are all home together.

Friday, September 9, 2005 3:49 AM CDT

Any sounds of the ordinary will awake me. It was the wind and rain just an hour ago. Upon entering Olivia's room she was awake with leakage from her pouch all over her. It wasn't coming off just too full and had to come out somewhere.

Cleaning her up--I moved her to David's bed.

Clinic went well. I did ask about scopes and if she was due or needed anything. For now, no. With things going well no reason too. Labs are good, growth great. But on the way home extreme pain. That is something we could do without, but she was fine when we got home.

It was a long day with iron infusion attached to the beginning and the van smoking on the way up to Papa's and just all that weird kind of stress. It took forever to get checked into the hospital and I just felt OFF all day--out of it, off my game sort of thing. Olivia too. Tired girl.

Olivia cried for David when we got home. When we called he and Papa had just arrived at the motel and were getting ready for bed. David said it made him so sad to hear Olivia "wanting him"--sigh.

Papa and David SURPRISED Aunt Linda for her birthday--they'll be taking her to a REDS game and she'll stay with Papa for a few nights before Uncle Bobby picks her up! Olivia and I will get David and see her Saturday.

Olivia hates to NOT be in the mix, but soon she'll have Papa and his place all to her when Daddy and David do a scouting camp.

TO see Papa and David walking away as we pulled out--TWO peas; SO thankful Dad is close by--so bittersweet. Wishing that Olivia and I could have stayed...soon.

Tuesday, September 6, 2005 10:22 PM CDT

TOMORROW IS IT! Our first "official" day of "school"! My girlfriend laughed at me--telling me that THEY HAVE BEEN IN SCHOOL AKA learning...but you have to label it that way to keep everyone happy.

But I must back up a few spaces before today as yesterday was a day which I'll always remember and giggle until my dying day.

David, Olivia and I had packed into the van seeking the NINA (A REAL to life replica of good ole C. Columubs' ship) which was docked down by the Crab Shack. The kids and I were amazed as to how tiny a ship it was--how she must have tossed with the Atlantic! So pleased we got a primo parking spot and NOT having to pay (big into that these days)--David blurted--I DIDN'T WEAR SHOES! Oh, my--that BOY! So there in the van Olivia had 3 pairs--that is our girl. We tried to coax him into wearing the clear flip flops which were a size too small and the stripes on the flop itself were a bit--unboylike. He just could not do it.

Oh we HOOPED it! Belly laughs--and even David mellowed and realized it isn't the end, but off in search of some sort of Office place for some special office supplies for school. He opted for the cart as to not show off his "shoes"--then over to WILD OATS--where I told him no one would care if he wore his little sisters flip flops so he enjoyed pushing the little kid cart. But it was all over when we took a restroom break.

Olivia and I usually opt for the larger stalls to make it easier to accomodate the empting of THE pouch. And when we were finished and about to unlatch our door--Olivia pointed and said, "OH LOOK MOMMY--David's feet!"

Oh another round of laughter--that image of those awkward toes--over the edge of those striped flip flops.

David too, laughed.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Piano!

Lessons went great!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

So tomorrow we'll "do" school--and MAKE school T-shirts.

Decided on school bird and tree.

Colors:

RED (O's fav) which represent the blood that was shed.
Orange (Mama's fav) which represent the riches in Heaven
Purple (David and Daddy's fav) which represent the royality of Jesus!

...

Oh yes, and a school song!

To JESUS!

Monday, September 5, 2005 8:49 AM CDT

So the roosters--yes plural--crow.

They are beautiful, but if one goes to Olivia's room in the middle of the night THEY sound the alarm.

Friday night was a family picnic birthday party for A and B. They both had wanted David and Olivia to be present at their party so waited until we got home from California. It was a great way to kick off the Labor Day Weekend! Dave and I plus a few others kicked the soccer ball and the kids had a BLAST. There was a path leading into the woods. We hadn't really hiked/walked since coming back from California--what a part of our lives it is! I took the birthday girls, David and Olivia and another Kindergartener. The children were amazed at the woods--we stopped all along the way pointing things out, but David in his SCOUT mode was ahead--Olivia following her brother. A beautiful mound of moss lay before us and I stopped asking the girls if they knew what it was--calling David and Olivia back--Olivia looked at is and recalled, "Oh that is moss!"

We've collected caterpillars who love "Queen Anne's Lace" Olivia has been replenishing the caterpillars supply.

Dave is in full force working on improving the CHICKEN pen. No longer is it JUST a hen pen--THAT is for sure.

Papa, Jordie and Miss Donna all came by, oh yes, and Aunt Becca! We spent some time together then a dinner at Becca's new home just minutes away.

While we are all about, Papa on his belly was reading to Olivia--two peas--so thankful.

This is our last day truly before everything will be in swinging fully. Piano lessons start tomorrow with a dear friend--amazing how God worked it out, Friday I'll have taught art--at the end of this week all our school schedule will have been.

Thursday is clinic. Mixed feelings here. In the scheme of things--something a GOOD dose of perspective aids--although Olivia is still not where we'd like her to be in terms of distention, her dumping stool. Iron infusion on Thursday--I pray will give her a boost of good energy as well.

It is horrible what has happened to our Southern states. I'll not commentary here.

Do what is right no matter if the stars fall.
(paraphrased-Bob Jones)

Thursday, September 1, 2005 10:46 PM CDT

Thank you, Elise--over and over again--with her help we GOT David's room into a very ordered space.

Bittersweet!

Dropping off Mary Lessie and the kids and I heading for a quick lunch out--dressed with their pleases and thank yous--the waitress said we were the most polite people today. She even blew up EXTRA large FRESH balloons for them.
It had felt like we hadn't been together all week so there we sat--all on one side of a booth's bench--hugging and kissing all over each other. "I've missed Olivia"

Blessings.

Off to the SCOUT store! There the sales scout lady got all the things we needed. I was in tears! David boy! Olivia sat in the chair glooming glumming staring out the window, "David is growing up too fast"! OLIVIA!

Off to a Christian bookstore where the saleslady gave me 25ff my sale!

But Olivia was hitting the wall, but then would seem fine.

I hooked up fluids before TPN/lipids and tomorrow will piggy back right back into fluids.

David must have read to Olivia for well over an hour--all her favorite Clifford books--and Bibles stories too.

He is by far my favorite boy in all the world.

Wednesday, August 31, 2005 10:12 PM CDT

FIrst AWANA night and I have to say--THANK YOU GOD that I can serve in this capacity, and mostly--that David and Olivia are able to particpate.

Olivia is INFLATED again; she is HUGE--scary kind of huge but she still eats and still runs during game time.

It is at night when she is in bed she hurts the most.

Please pray.

How I wish I could bring together all my favorite children from all over this country--touch them in a way that would make a difference in that moment.

So many thoughts--and too tired to type.

David boy--I love you; and Olivia I love you.

Tuesday, August 30, 2005 3:54 PM CDT

Olivia seemed to come out of this flare finally although I do believe she was building up to it for several days.

Our school activities are slowly starting. Sci Club was yesterday studying magnets. David answered several questions and was on it; as I said to my brother Olivia was probably more interested in the colors of the magnets.

It is raining--non stop--I just fed the chickens and they were soaked to the chicken bone--in good ole chicken slop--gave them good goodies. Cadbury looked good; he gets the best spot--bunny king.

We are blessed to have Mary Lessie staying with us during her mother's eye surgery--her mum is still recovering in the hospital with her daddy by her side; we are so thankful to be able to lend this helping hand. David and Olivia are grateful too. They so would love another child in their midst; Carolyn is tops on that list.

Looking forward and trying to stay dry.

Extra special news is that Natalie answered her phone in a step down unit (no longer in PICU) as her Grandmother posted on their guestbook.

Need to drum up a game of Flea Circus while we wait for dinner. Who said three was easier than two?

Blessings!

Monday, August 29, 2005 7:58 AM CDT

She deflated! I've not checked her this AM, but yesterday was a MUCH better day for her.

Friday, August 26, 2005 4:15 AM CDT

It is 4 AM and there is a distant Olivia cough--THE cough that is the warning. "My tummy hurts" I lay there wishing that Dave would have heard as he'd jump to her side but alas he is still sleeping.

I didn't sleep well last night again I never really do knowing Olivia's belly is growing bigger by the day.

I tried to pull from her G tube which only made her vomit. The chunky green bile type stuff.

She requested cold water, not in a whining "COLD water" fashion; it was different.

Next to her now rubbing her foot and feeling her belly we had one of the precious conversations that she and I can have in the wee hours.

I told her about Dr. I's presentation at the conference--the concept of surgical procedures to aid in those with intestinal failure. I sat at a table and told him about her pseudo obstruction; I knew it would not float for her these miraculous surgeries.

"you didn't sign me up did you"

No, no surgery.

Then we told our silly dreams.

"it is still night"

No it is very early morning.

"early like getting up for the plane ride"

Sometimes I allow myself to cry with my children--after reading books, or watching a sad movie, or tears over her swollen belly.

"what is it, mama"

I'm just sorry your tummy hurts.

All I can see is her profile. Petting her hair off her forehead--she is quiet.

"I like the cold water after I vomit because my teeth are all slippery"

Do you want your toothbrush?

"no"

Close your eyes.

SNEEZE

"sometimes when I sneeze it hurts my J tube"

Did it just hurt?

"no because you put more water in the balloon last night"

Last night was the first night that Olivia allowed me to replace water without extreme fear her tubes would come out. When it was all done--she felt better with them snuggly secured.

She reaches over to her nightstand for a tissue, blows her nose. It hits me how "old" she is.

What if I hadn't come in time?

"I was about to turn the light on and get my pink pan; I just couldn't see it without my light"

Yes.

Close your eyes.

Time to place an order--we are running low on fluids.

Ah--Olivia's rooster crows.

It is morning.

Thursday, August 25, 2005 8:58 AM CDT

Days are slowed here; which is good.

Last night's AWANA kick off was a blast.

Those AWANA workers who were available signed up crowds of children for this year. It was the last night of WILD WEDNESDAY--something David and Olivia had not attended pretty much the whole summer with being here and there and getting ready for there and here.

There was a cake eating contest--when I got down there I saw Olivia painfully trying to eat WITHOUT her hands--not something a dainty girl likes to do. But she tried.

Both of my children were taken with their bathing suits. Olivia had a little skirt on as well--and her belly distended. I had her so wrapped underneath with AQUAguard and Tegrederm to keep her line from getting wet--I actually think it was better like that as it wasn't pinned but up against her body.

She slid down the SLIP n SLIDE on her bottom. Neither of my children go too wet but had a blast. Although very much a little girl she loves to be physical--she is a good little athlete. STRONG.

It was good for me to be around all the other children; I love mine, but I know my gifting and calling is to other children as well. I was DRENCHED. I was chased and until I started to fight back--was pretty much an easy target. It was silly fun.

But I'm reminded constantly of those things we are able to do--to NOT take them for granted--I loved that Lindy and Chris were up for the fun with the kids as well--fully living.

Thanks friends.

Tuesday, August 23, 2005 10:02 PM CDT

I'd love to know WHO invented "stuff".

It seems everywhere a child goes stuff is given out--and if it is not stuff it is candy.

Digging deeper into David's room which has not had a deep clean in maybe--6 months--I'm discovering a whole new world of stuff--pack-rat-dom. This boy in true boy fashion has anything from bottle caps to rocks not mentioning the slew of Lego and K'Nex and things made for him or by him.

Olivia's room has been DEstuffed with many items gone--TO be given away. My lofty dream of having a YARD SALE with my children to start saving for this or that is that--LOFTY and LOONEY. I want this STUFF out of the house so it will not longer dangle around our heads.

OUT of here!

Stuff strangles me after awhile.

But relief is on the horizon--I know it to be for no more stuff will just appear.

Olivia had a shower tonight. How that child LOVES water in ANY form--COLD to drink--HOT to wash. During her cap change and dressing change she actually asked me if it was all right for her to talk--and DOES she LOVE to talk. SO on she went and I brought up the skating incident from today. Olivia has mastered manipulation. She will twist her face in such a fashion which David falls to her every whim. We discussed this through her dressing change--taking a break to read a few books, but then after the lights are low again.

How she has grown--watching her ride her bike--"riding up hills brings on the pain"--meaning she is WORKING to get up the inclines--very much so--we ALL are!

But before she fell asleep she asks--Remember at Grandma's and we watched the silly cartoons and one was called the place we went to--Olivia sometimes forgets--Oh, you mean Yosemite? Oh yes, Yosemite Sam!

She requested paper--2 SHEETS and pencil as tomorrow morning even before she is UNhooked she is writing a book.

Oh dear. What am I to DO?

Tuesday, August 23, 2005 7:32 AM CDT

New calender.

After transfering all the dates for art, Cub Scouts, AWANA and other little school related activities I became sore afraid. I had needed a short activity like that so I could put Jbag back onto Olivia's Jtube. She's been growing bigger and bigger--like the days long ago. Her distention has become almost a norm again.

We had a day at home with school--Olivia is really practicing her letters. They are precious like little people in her drawings marching across the lined page. Sometimes as tall as they should but mostly each uniquely made. She's so aware.

I've decided to keep on with our history--reading it in a story form with lots of interesting facts along the way. Helping them to see how things came about and geography is much a part of it too. William Penn was our discussion yesterday. It was fun to learn (for them, I of course remembered and KNEW the whole story...the JOY of homeschooling!) how Pennsylvania got her name--even the story of the log cabin origins.

Spelling is another subject as we'll be in a non-competitive once a month spelling bee. Olivia will be working on her short vowel three letter words--and David his list will come from his spelling words for that week. But within spelling is poetry memorization. Yesterday I read through "The Elephant" Author Unknown for David twice and he had it--and with hand motions. FUN! Both are such performers that I think this will be a great way to get them speaking in front of people (Bennett House) more. Although "hams" of sorts they can be extremely shy.

Science we are reading about magnets. Today we'll break out all the different magnets we have--next Monday will begin our first Sci Club meeting! Magnets are on the docket!

For music we had to find a new piano teacher and will wait for David to settle in with her before adding Olivia. So many changes for such a little one--being accountable at Science and Spelling with her dance added in next week as well.

Art will be on Fridays. Where I'll teach over a months time about 50 (not sure on numbers:) students! I'm extremely excited over this--especially with David and Olivia participating in their "own" age appropriate class, but also will be sitting in on all the other classes! So much they'll learn--not just about art either!

Monday nights is Cub Scouts and dance. Daddy has committed to CS and I'll take Olivia to dance. She already has all her shoes in a backpack ready to go.

September 7 is our first official day. We'll begin with the Pledge to the American Flag and prayer with their Bible story--all else is subject to flexibility with mornings designated for Mama as teacher.

Just anxious for Olivia to experience a good year just as last year was. She's grown so much in many ways--with Daddy stepping up the father--son stuff--I'm looking forward to mama and daughter time.

All for Jesus.

Monday, August 22, 2005 8:32 AM CDT

A fresh week.

A great weekend home helping to solidify our being really home--what an adjustment--not from being in the hospital but from a great get-a-way--blessings.

We went to church as a family for the first time in several weeks. Sunday has a different feel. I'm taking it as the Lord's day--being with family and resting. No longer am I leading music on Sundays (switched to only Wednesday nights) and it made such a huge difference. I was able to "BE" with my family. David and I headed over to the Bennett House--an assisted living home. Now that got my blood flowing again! David played his 5 songs--so cute--I wanted to reach over and hug all over him. Then I took my old hymn book which I've had since accepting Jesus--no more cover to it--I used this book when I played church piano years ago--drummed--maybe, not play. But just as the people of that church were so thankful so are the folks at the Bennett House--there I can drum along--sometimes only playing one note and singing these wonderful songs of Zion. God's great Love for us! It was a great worshipful time.

The highlight of the day was our family bike ride. Onto Skyline and back into the new subdivision--they did great--O did have a fall, and when we got home I weeded a bit and Olivia was done for the day. Today will be fluids only because she was so distended yesterday--and want to make sure she's not running on empty.

The conference is still very fresh indeed in my heart and mind--not necessarily the information but the friends who were made and those incredible moments I'll never forget.

The last night's farewell dinner was great. It was Mexican fare and I'll have to agree--with T--in that Mexican may not have been the best choice of food--with GI challenged folks--:) There was about a 8 piece (I'm not good at counting exact numbers on things) Marache band--I know the spelling is way off! There were two trumpeters, string--guitar, etc. Dancers as well! But when they took their break--and the band just played--I told Olivia to dance--and dance indeed she did--with such passion--at that moment--I wanted the world to see her--mostly (funny) I wanted her doctor and nurse to see her--if they could have just seen the strength (which I'm sure they are aware) in her. In the next room were games set up--and each time the children one they put their name on a ticket to be drawn. Olivia WON the big bear! It was a great night for her--David too, as he sat with his Kaj, Mr. Tim, Sean, well, the Forney family--and magicians to share their magic.

Please continue your prayers for Natalie; she is still in the PICU critical.

Saturday, August 20, 2005 7:19 PM CDT

20.

I awoke this morning remembering that I was almost 42 years old. In my heart and mind I feel like a wise 25--maybe?

Adjusting--and seeing it was clearly 10:45 AM--still on our California time, but everyone else wide awake. Dave reading a book, David making something and Olivia imagining something else.

No more caffiene for me; it was just a year I had to--now discipline hopefully will make me sleep when needed and if a jump start is called it'll be tea--much more milder.

Olivia was deflated when she and her two boys brought her home from a Target field trip. She was complaining about people poking her while sleeping--like the women she is--she was drawing from the plane trip home when I had to wake her--TWO VERY LONG deep breathes then nothing for TEN seconds--over and over--sleep.

On returning we began our stepping into school. David wrote the titles of the 5 songs he would perform/play for the Bennett House tomorrow--he has added some tags to the titles of each song. I can't wait to see how he presents each song before such a sweet crowd--80+ yr! I'll play my flute and play piano for them.

History and science too--gradually hitting subjects before September 7's first full day here at Valley View Christian Academy.

Our trip has me a bit disengaged from life here. I think about Carolyn--my one and only little niece. She clearly has stolen my heart in such a different way than David or Olivia--I guess something similar to what a grandparent feels. I hear her voice and all comes into perspective. Special children have a gift to do that to those of us driven...

Weeds are growing everywhere--where in California it was dry here it is green and weedy. Plants growing on top of plants. Little surprises have finally blossomed; I have melons growing in the front YARD--and by the mail box! (I LOVE IT) and the chickens are now far too large it seems--a new pen is in order.

So much to say and to write about concerning our trip. Another time--it is still very fresh indeed.

To God be the glory great things He has done...

Wednesday, August 17, 2005 11:29 AM CDT

Home!

As I put in an email to my art moms--it was an incredible trip God's leading our paths every step; I'm in awe.

One of the first nights in Tahoe Olivia had a low grade fever; I was about to go into numb mode and call Cincinnati when she snapped out of it. I give thanks.

All the sights were spectacular, but none compared with the fellowship with friends and family along the way.

More to follow--thank you for loving us.

Tuesday, August 9, 2005 11:11 PM CDT

We ask for prayer--Natalie is struggling for her life. I spoke with her grandmother today as her mom, Hope has been by Natalie's side constant.

Very difficult times.

The visit here at Grandma Lodgie's and Grandpa Jerry's house has been very relaxing and special. Cartoons, Monopoly, a weekend sleepover with my brother and YES--COUSIN Carolyn--oh, how I miss that little girl--and a highlight of a family "reunion" of sorts at Jerry and Cindy's home in Modesto--Sunday.

Great food and dear family and people who I know are praying for our family daily. Easy to be with--as if IT hadn't been the 2 years since. It was such a great day but of course bittersweet as it was the day I'd not see my brother and Carolyn for too long of a time--and too, the many folks there I wished weren't so far away--all of it brings tears. I guess it is also part of being away from home and the dear friends there--and missing my own Dad--Dave's family in St Louis--God's best gifts--

Olivia said tonight, "Grandma, I wish we lived here, or that we lived next door"--I will miss my mother.

Jerry took Dave and the kids to a fish hatchery while Mom and I stayed back--packing and napping.

Little pieces of my heart are sore--missing my family here already.

So off to San Diego; a treat to those in Northern California it seems; for us DeKolds from Southern Indiana--almost a dream--anxious about the drive--the length and stress of it. There we'll be with yet another group we call family. TPNers.

Please remember Natalie.

Friday, August 5, 2005 3:46 PM CDT

Its been a week since we started our California journey.

Now that we are in the "valley" near Don Pedro Lake just an hour or so away from the entrance of Yosemite National Park the days are warmer and instead of green and blue of the Tahoe we see the golden land and California Oaks.

Since my last journal we were treated to a trip up Heavenly in Lake Tahoe. We took a gondola ride to a mountain of 9100 feet. There Tahoe was in full splendor and able to see Carson City where we had visited the day before to a RR museum. The kids enjoyed it fully; Olivia was a bit deflated but came "to" when we visited gift shops. David fit nicely into Auntie Kim's ice cream trips.

The day we left Tahoe David, Olivia, Carolyn, Greg, Grandma and I took a short walk/hike back to a swamp near their home. The wild flowers were great; Olivia learned that we only pick if we are going to identify the flower. It was precious to watch Carolyn on a walk. She is such a darling.

She stole my heart.

Since being at Grandma's Olivia hasn't required fluids.

We enjoyed Yosemite yesterday--bring back my memories of Yellowstone as a child visiting Aunt Vangie--the smells--then reminding me of the trip Uncle Greggie and I took with David when he was just a year there. Yosemite is awe-inspiring--God's largest granite display--an Eden for those climbing the largest of and D and O and I crawling over the boulders in the river--waterfalls--

David and I took a short walk to the base of the Lower Falls. Then we jaunted over to the vista of both falls lower and upper--just a boy and his mama. He took pictures of me and I of him sitting on a boulder remembering John Muir.

Grandma was most gracious the whole day keeping her eyes on the road and hands on the wheel assuring that I could look away from the road to the granduer. Truly.

Learning that my children are but children. Young, small, with big hearts and limitations. I had suggested a travel journal for David; he added that he would put in what HE has done so next time (as this helps us not to be overwhelmed on our travels) he knows what he's done and can do "more". If we had had more time I would have climbed with David.

Yosemite.

And today so nice to sit here with the laptop at my fingers after a good deep 2 hour nap, something I've not done in a week and for a mama who wakes up in the middle of the night to empty pouches, switch TPN to fluids or fluids to TPN, respond to the beeping pump--it isn't that I'm lazy and need to sleep my life away, but to rest so I can live a life.

Greg comes with my little niece Carolyn tonight. Driving in from the Bay Area and staying over two nights going with all of us to Sunday's California Family party given by Grandpa Jerry's son and daughter-in-law in Modesto. This is the day that Daddy will join us. Can't wait to see Dave. I miss him.

Thank you for the prayers and care; we are having a very nice time. God has helped me to keep things in perspective and lean on Him more.

Tuesday, August 2, 2005 0:52 AM CDT

It IS Tuesday already? Here in California it is just 11 PM, but I'm up checking all the caringbridge sites; I'm not very good at that much anymore, but tonight I felt the need since I'm waiting for TPN to warm--fluids running first--then TPN. Olivia has pain tonight; belly IS distended, J and G bags, overnight cath--fluids flowing--I feel SO far away from home. I continue to amaze at the fortitude and longsuffering of families who deal with such major life threatening choices and care within their home or are living INSIDE a hospital--doing WHAT they HAVE to--no planning it--no getting around it.

Yesterday my cousin who lives in RENO and his family came here; what a blessing--David and Olivia both very happy to see them again and SO soon after our reunion early July.

Then off to Carson City to a RR museum; Carolyn was completely adorable. Eat and a drive to a very special place for a short hike. Singing the whole time in the suburban--when I had stopped, Carolyn said, "Sing Auntie Sheila"...music to MY ears. David saying "AWWWWWWW" to Carolyn's cuties...

I think we'll put her in my oversized suitcase and take her with us!

Thank you for your continued coverage of prayer...

Saturday, July 30, 2005 11:53 PM CDT

Incredible.

David's exclamations over a plane lifting into air--both children's faces pressed to the window; Olivia in front next to her mama and David behind with his grandma.

From a small plane to a larger--the western views--easy flights.

Grandpa Jerry and Uncle Larry there to greet and send us on our way; stopping by IN n Out Burger then to Tahoe where we were surprised to see Uncle Greggie who had taken the day off!

Playhouse, swing, sand and cousins--brothers and sisters...family.

Outside all day found Olivia a bit warm and concern heightened the evening, but now she is asleep--low temp free.

Please, prayers of protection.

Thursday, July 28, 2005 4:25 PM CDT

Less than 12 hours and we'll be UP and AT 'EM!

The level of anxiousness--EXCITEMENT is POURING EVERYWHERE!

Grandma is on J tube meds until Daddy gets out to us; YEAH!

ALL is packed and HAS been for days now--not taking any chances of forgetting something important when there is SO MUCH which is important.

The weather feels like autumn--how I love it and to say goodbye to my garden(S) and dear friends here--but to cuddle on the airplane with either child has me so delighted. To see their eyes light as they learn and see new things. What awesomeness.

Please pray for Natalie and her Mama Hope, Heidi and her daughter Heather, and all our NS family who'll be traveling to SD as well.

I can't wait to see my brother; will miss Dave until he meets us.

Thank you, Kimmers for taking care of the hens and bunny--
and to all great night!

TO JESUS!

JOSHUA 1:9

Wednesday, July 27, 2005 8:10 AM CDT

In the beginning it finally dawned on me after how many years? I don't care for birthdays because with them come expectations. God has been working long and hard on me with me for me ON this for some time now. (YEARS)

Last night's dual party with Seth was so much fun. For Dave and me, as well as David. IT was hot, but the bulk of it was spent inside as we pretty much had the whole www.TUMBLESTATION.net to ourselves.

All of David's buddies were able to come except Darla's two, (Please pray for her during this heat very hard on her with the MS.

After tumbling, pizza (which I had wanted to pray--and I just got so choked up--I could not speak for probably, hmmmm...15 secs--TEARS OF THANKSGIVING!:) cake, ice cream, presents (OH MY!) it was time for GO KARTS!

There were only 3 in the smaller group. Get this, 2 pink and 1 yellow. WE let the birthday boys go first, and David got the BARBBIE RACER! OH MY! An older boy yelled out--David, you are in the BARBIE CAR--David said later he could care less--he was in "RACING MODE"--and then this same boy said,

"IT takes a REAL man to drive a PINK CAR"--YES! But God works. One little girl didn't want to ride and Lindy (Seth's Mama) gave David the ticket--he got to ride twice. Lindy also gave Seth's 5 RED balloons to me to give to Olivia when I got home. How that brightened her face (although she had her own blast with Grandma and Grandpa:).

Thank you, LINDY!

Time got past us--and people needed to leave, but there were those who were there for the long haul--so we did PUTT PUTT next. Nice to chat more leisurely with the moms there. (THANK YOU)

Talked about BOY SCOUTS; we are SO excited about having David participate! Being with like minded mamas--what a blessing.

BUT TODAY is David's 7th BIRTHDAY! 7 years ago! THE CHILD WHO MADE ME A MOTHER WAS BORN.

I can still hear Dave asking every nurse who came into the room, "ISN'T HE BEAUTIFUL?"

Beyond my wildest dreams; God gave me exactly my hearts desire in both of my children.

Looking forward.

Monday, July 25, 2005 5:22 PM CDT

Very strange how this hot air has hit us. It rained for what seemed like days and since the rain its been too thick to do much outside.

We are in what the DeKolds call "lock down"--not going anywhere unless absolutely needed. David's need to go shopping for two birthday presents tomorrow and sandals and possible hair trim with Grandma--then his birthday party.

I've been just sick over this party--wanting something special for David, but realizing that it is not safe really for Olivia to go. Last time she was there she got sick (viral) and with our leaving out Friday--the heat--

I asked her, "Would you rather have 3 hours at David's party or 3 weeks in California". It was a no brainer and she seems very content in staying home with Papa Virg and most like Grandma too. Wednesday is David's "real" birthday and we'll be home all day to love and treat him.

Overall, I've been struggling with fear, fragility and frustration. Fear over this trip--fevers and what ifs have consumed me.

I know it is time for Faith to take over, yes.

Saturday night Olivia complained of her tummy hurting, pain, and vomiting; Sunday she was even more quiet and pretty much stayed "down" all day. She pipef that she wanted to go with Daddy on errands which was disasterous. Lots of venting of the G and lots of everything coming out. Tears and not wanting to wear her G-bag--in the CAR at that. Not our Olivia.

But today I called Jan W about looking at the art room for next year. An amazing woman--back on track a bit--reminding me that there are scores of people praying for Olivia's protection.

But today Olivia is back to happiness--although my day was crazy with nothing which was planned coming through--our eye doctor just up and left this area--without any notice to us--wild. Strange day, but Olivia is better and with that we'll rejoice.

For this is the day that the Lord has made.

Friday, July 22, 2005 8:11 AM CDT

David's birthday is approaching.

He is quick and sure of it along with the fact that he'll have a birthday with friends, at home, in California and finally in St Louis. There is no getting around it, this boy is ready to live it up.

Last year I didn't even sing happy birthday to him; he swallowed his birthday like a big pill sinking to his stomach. Papa and he had dinner with Miss Donna on their way to Papa's; while Mom and I scrambled to get things together and Dave held Olivia in Kosairs--waiting for the transport vehicle to arrive.

David mentioned just a few weeks ago, that last year all he wanted was his sister to come home and to be all right.

Back to the present.

Olivia seems to have bounced back from not only the virus, but the antibiotics she had flowing through her veins. Her dumping episode was most likely due to the antibiotics, etc. She looks and feels great again.

It IS hot here, finally. So we'll be staying inside, packing, practicing piano, reading--they each need 4 more books for their library reading.

Slowly I'm becoming excited about our trip--not fearful as much. Hoping to continue with minor schooling and San Diego is teeming with all sorts of learning activities--it is almost overwhelmingly so.

God IS in control.

Thursday, July 21, 2005 3:29 PM CDT

I can see the finish line--or is it the starting line?

THE California trip is drawing closer and closer--a WEEK tomorrow we'll be flying out of LOUISVILLE to head to Sacramento!

Everyone has been very supportive and excited for our going, but I'm a bit nervous. Will be glad to get ON the plane.

Clinic went well.

Reds game was great--GO REDS!

Cubbie fans were OUT of control!

Mom is visiting Connie and Jack. Tomorrow the kids and I will have school--pack--rest--but pack!

Growing excited about seeing family--dear friends...

Handing it over to GOD!

Wednesday, July 20, 2005 7:04 AM CDT

We've had power weeks.

Dave gone for a week to California--then our trip to Papa's, coming home to a Family Reunion away for two nights then POOF to Cincinnati for a few days--Auntie Vangie here for a well needed visit--now back to Cincy for a planned REDS game with dear friends of long ago, Papa and Grandma Logi--and clinic tomorrow.

(THANK YOU AUNTIE FOR COMING!--the kids adored her--playing games, Olivia singing CHEER Cincinnati on the deck to her:) ALL OF IT--great!:)
WHEW!

Stopped in at church yesterday to pick up Miss Lindy as she and I are planning a birthday party for Seth and David next week at the Tumblestation. A hug from Jan W and Sherri really was great and knowing that they are praying for our upcoming trip to California because I have to hand it over to GOD.

As I said in last clinic--either I'm getting old or just tired, these long distant adventures are more difficult. In the grip of fear--wondering IF she gets a fever--even if it nothing--something could COME of it if she's in a place which will NOT listen to me--Oh, I could go on this vein for a bit, but will not.

Pushing it over onto God as I know that this will be a growing experience--and the kids are extremely excited to fly--Tahoe--Uncle Greggie, Auntie Kim, Cousin Carolyn--La Grange to Grandma Logi's and Grandpa Jerry's--then to San Diego to see our Nutrishare Family--precious folks.

Praying we'll see Yosemite for a day and every inch of the days filled with good memories.

But before that day of departure we have many loose ends to tie, a birthday party, interviewing a piano teacher, eye appointment for Olivia...

Oh but the joy of it to see their noses pressed against the window looking out into the sky!

Olivia seems to have leveled off a bit. Praying that clinic goes well and we can be home again home again early Thursday.

ALL to JESUS!

Saturday, July 16, 2005 10:03 AM CDT

RAIN!

We have had RAIN! What a blessing as it has been so utterly dry--now it won't stop! But knowing it is but a season and one well needed.

David and Olivia played ALL day yesterday around piles of suitcases, books, supplies, the house a wreck, but their only requirement yesterday was to pick up their toys in the big room--and to reconnect, play. So missed each other. AND THAT they did. Fully and completely...Olivia and I started the day feeding and cleaning outback on the blacktop. What a joy. She so loves the animals and is becoming more and more sensitive to their needs. David was out of sorts, until Olivia gave him attention.

Dave took David to the Dayton Air Show. Tears. Blessings that Dave did this. One very tired old DaddyO, but willing to sacrifice to do something with his son--which will leave a very lasting impression.

Olivia hated to see David go. We had to talk David through it somewhat. He is so much the caregiver. At Papa's library I ran across a magazine "CAREGIVER"--and they had a section for siblings--David was it to the "T". He IS a caregiver to his sister. Just something to be very aware and sure that we allow him outlets. Boy Scouts will be so good for him...

She had pain last night--no stool--scary when that happens--but after a foot rub and "Near the Cross" she fell asleep with a content smile. But throughout the night she whimpered and after a 7 AM Mommy melt down I stopped TPN and hooked a liter of fluids--and we both said sorry and held hands.

Now for Grandma Logi to come--with her older sister, Auntie Vangie from New Mexico. Also got a call that Aunt Becca and Jordie are on their way...so needed.

Love.

Thursday, July 14, 2005 4:20 PM CDT

Home.

With tears Olivia left--as she was NOT finished with watching Cinderella during her grilled cheesed breakfast.

David ever loving--playing off of Papa's back with some of his gadget toys when we arrived. Dad and I caught up then off to the pond. I want to regain our normalacy as soon as possible and the sterility of a hospital vanished with Papa's pond.

One the way home we stopped at McDonalds--too tired to think about dinner and after they ate (OK, so it lasted a week not eating in the van) the fun began.

I was so tired I could have pulled over and napped. But soon I started to really listen to D and O's play--which alerted my senses.

Olivia's little animal was in the hospital starting a new medicine and feeds. David's animal was soothing, caring--sometimes the doctor sometimes a friend--but encouraing Olivia's to come on through--to not stay sick.

He is so kind; David is quick to share how much he missed Olivia and loves her. Not weak in all of that, but sure of it.

But we are home.

One my trip back up to O's room (it took two trips to the van) back at the parking lot elevator I witnessed yet another snapshot of pure 100% love.

The "patient" had to be 16--craters on his face from extreme acne--holding his mother's hand after she told him that he had done a fine job pressing the button on the elevator. Inside, he drew closely to his Mother's ear and whispered and she turning to him--looking into his eyes--reassuring him with their phrase I'm sure is "their phrase"--what love--how tender--how...

So many snaps--like the Impressionist who captures that moment--

Home.

Adjusting and quietly family filled.

Wednesday, July 13, 2005 1:57 AM CDT

WEDNESDAY AM--
GI ROUNDS: Discontinuing all antibiotics and watch for 24 hours. Praying for home tomorrow. Olivia is up and at 'em today--talking all the while--a bit on the bossy side--all the nurses are most impressed with that--and comment she has a VERY HEALTHY SELF ESTEEM...I pray that will carry her through the tough times--anti-tube times...I know how I felt just having GLASSES! OH MY!

I just love seeing Malisa's smiling face everytime I come here and D and O's newness of this journey...how blessed we are to have been called here--I truly believe that. AND to see my dearest friend's long beautiful hair who reminds me constantly--that we are..

Called.

Thank you.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Today was a strange off day--one of those days in which we camped out in bed, slept, watched some bits of tv, and did medical care.

I learn something new every visit and with Olivia having a reaction to the antibiotic Vancomyacin she required pre-medicating with Benedryl. A nurse "pushed" Benedryl in 3 minutes into Olivia's central line and Olivia reacted to the PRE-medication--which was a bit scarey. SO thankful for the internet as I was able to get several people's point of view on this within minutes. And with the next dose had everything rectified.

Olivia was OUT like a light for the entire time from 2-7PM. Her body needed shut down rest plus with the drugs--there was no fighting it.

She temped all day at 101.somethings--not until after her long sleep did the temp BREAK! Her whole demeanor seemed to change a bit as well.

This has been a hard stay. There is an awareness that things are happening at home which we are unable to participate; it is getting harder for Olivia to be separated from David.

After talking to the resident she feels that we should go home on Wednesday. But last time a resident told us that; we ended here for another day.

I've had some very kind encounters off of the floor.

Lots of pumps beeping--at least at home I can DO SOMETHING about it...Olivia was so cute tonight--well, this morning--at midnight the pump was beeping and I called for the nurse (O has really taken on calling the nurse BY herself--what a big girl!:) and Olivia half awake said when the desk called back--said--"MY pouch needs to be emptied"--I started to do that so tired giggle--I said, "No, her pump is beeping".

Got sweet little pick me up gifts today from faraway friend--it really made O and I feel a LOT better.

And hearing that Olivia's little girlfriends have been going forward at VBS to pray for Olivia--and hearing from Dave all who have been praying for her--us--seemed to make me feel better too--

Its been a lonely few days--my prayers and thoughts have increased for the likes of those who do this on a regular basis--being in patient with your child--day in and day out--with no end in sight most days--and for those of you with other children...

may your family be protected--and encouraged--and know that Love surrounds you not only by friends and family but with God.

Monday, July 11, 2005 10:35 PM CDT

Olivia STILL is temping...praying

"I wish there were American BOY dolls" and David resonded quickly with, "You just want them to get married".

"It is part of God's plan" bouncing the conversation ball quickly back to her brother--and he--but NOT ALL people get married.

So true.

"Not everyone is called to be married, I'll not get married"--for some reason when I hear my daughter say such things it is as if my heart sighs relief. This 5 year old is in no hurry to fly the nest.

Olivia didn't seem sick and as I dawdled in preparing for the (at least) 48 hour hospital camping trip I grew more and more blue about having to leave a partly cloudy day with talk of Dennis possibly visiting.

Cramming clothes and repacking supplies we were off and the conversation was well oiled the whole way.

Dropping David at Dad's seemed like a replay of last Thursday except this time there was NO set clinic appointment and I could sneak to the soda fridge for that needed jolt of Coke. Olivia laid her head on "the moving pillow" Midnight and I took a peek at Dad's Rose of Sharon which are in full bloom. Olivia and I both talked how much we wished we could have stayed.

David wheeled his suitcase filled of asthma and allergie prevention--and when told to ready for "Yellow Dog"--David sheepishly asked "so soon"?

I began to think about Cincinnati and immediately began spelling the chant--
C I N C I double N A T I--THE only way it seemed as a scared freshmen I could learn to spell the silly city as I would write checks out to the University.

And from there we sang:

Cheer Cincinnati!

Cincy will win; fight to the finish; never give in.

You do your best boys, we'll do the rest boys and onward to VICTORY!

After singing it through SEVERAL times; I asked her--do you know what it means?

She thought it meant that Cincinnati was in a war and when the boys were finished the girls would take over.

What a hoot.

But after blood sticks--she went a bit inward didn't talk to the Fellow at all--interesting chap and looking forward to hearing more from him.

After making it to the room she sat on her bed; she looked so tiny and a bit sick--but ate two small sized pancakes.

Only one verse of Amazing Grace and she was down.

So thankful for everyone's prayers.

Monday, July 11, 2005 9:54 AM CDT

Miss Olivia went to sleep with a low grade which at one point hit 101. something--going to Cincinnati.

Please pray that it has nothing to do with her 3 year old central line.

We ask too that you give us wisdom as insurance dwindles.

Thankful for my Dad to watch David.

Praying we can stay at RMH instead of inpatient.

BUT Olivia looks good--but off--a bit, like something is brewing--

And Dennis is making his way here too.

Prayers for tender David.

Sunday, July 10, 2005 6:11 PM CDT

Back from the BLINN COLEMAN Family Reunion.

Five years ago in Tahoe was the last--this years was in Indiana. David and Olivia enjoyed playing with cousins (not first cousins), many stories here but am exhausted with the thought of recounting.

I do have to say that I'm so thankful that David made a dear friend and Olivia had many teens trailing after her.

Glad to be home. Two nights of little sleep and two very tired kiddos--it was a lazybones day.

Getting fired up for VBS this week.

Grandma Logi went off with her sisters but will be back with Vangie end of week.

Oh PONY RIDES!

Thursday, July 7, 2005 11:56 PM CDT

Clinic.

WEIGHT GAIN! Leaving TPN/lipids alone and increasing Zelnorm slightly--lots of gas and some distention lately and want to see what that'll do. I can't even begin to express how much O's team means to us--how they treat her on EVERY level is amazing.

Olivia caught Nurse G up to speed on Papa's roosters while Nurse G drew labs. It was so hilarious to hear her slant on "One Eyed Jack" and "Mr. Whitey". And while waiting she drew on the board--of course accompanied with a story.

We drove a bit around town as we were hoping to meet up with Miss H and M, but M had to stay at her home hospital--with a line infection; hoping to mee them next time they come to Cincinnati.

(I GOT TO TALK TO JO!:)

While driving Calhoun Street by the University has been torn down and built back--and parts are still boarded where soon new and TALLER structures will live. Wow. I was reeling having not eaten--and Olivia declared that I SHOULD GET TO CHOOSE THE RESTAURANT SINCE MY HOMETOWN WAS BEING TORN DOWN. Olivia!

She has plenty of Olivia parts today; She exclaimed with glee when I mentioned hitting the art museum (FREE EVERY DAY--I LOVE THAT:)--

but the kicker was when we got off the elevator (all during the time we were waiting for her perscription she was twirling--after all she WORE her twirling dress)--I had to stop and remind her to walk like a young lady--as the halls are BUSY--walking city--people zooming--bustling, etc.--and a woman walked by and said, "Girl, let her dance--she wants to dance"--made my day--and so there she twirled while holding my hand.

Twirling.

And David with Papa--digging up a huge rock so I'm told while Papa worked on the tractor--Papa said that at the "play area" that David made two little friends. When David left they were calling to him, "Good bye, NEW friend"...this time boys.

So thankful.

Thursday, July 7, 2005 2:58 AM CDT

David's trying to work into an asthma flare; I got up to give him a breathing treatment--now no sleep.

Today is clinic day. Although Olivia is still doing relatively well; she has more distention than she's had in a long time. Required fluids yesterday and probably with that will adjust TPN. I never thought it would last, this cutting back, but it still stings.

And after a season of "tra la la"--blinders--living life in the "typical" sense--I feel that lately I'm supposed to really reel everything in--to close down shop--and get ready.

In the dark of night all things seem a lot bigger or unobtainable.

The what ifs really scare the life out of me. In the grip of fear.

But it boils down to the young girl with pseudo obstruction who at 14 went into liver failure and in need of a transplant died on the table.

Can't stop thinking about this family. Praying.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Today~~piano lessons. Olivia went first and was such a chatter hound. I love seeing her sitting at the piano--"Oh look, a robin is hopping around"...Mrs. L is SO good with her, smiling and commenting but back to the piano--"You are a girl who likes to dress up" was Mrs. L. comment to Olivia later. Yes, in true Olivia fashion; a dress, sandals, ladybug necklace, no bracelets or rings as they may distract from her piano playing but of course clip on earrings....

Off to a field trip meeting; Olivia preceeded to preach to some older kids about the words "Stupid and Shut up"--David told her to stay out of it. So glad we stayed home from church tonight so we could address this fully and learn from it.

So thankful for Dave.

Tuesday, July 5, 2005 9:18 PM CDT

Catch up.

Caught up with so many folks via the phone today; I'm not much of a phone talker but trying to set up a birthday party gig for David.

Tired. Late night and felt it today.

Elise was here all pumped about the Blinn Coleman Family Reunion taking place this weekend at Brown County; she IS a part of our family and will head out with us. I'm in a bit of denial over the next few weeks and the level of participation for Olivia. But as Dave and I have discussed; it is just 2 days out of 365--we can handle it.

Swimming with a central line isn't always something which folks do. The catheter is going into her heart--and if GERMS get in there--NOT a good situation. But it is summer; I loved playing in the water as a kid, not something we did every day it was always a very special thing, but perspectives are different and we'll flow.

As she sat on the sink for her "sink bath" tonight we discussed ways she could participate in the Reunion during the "pool" time. Her whole attitude was so upbeat and inspiring. She came up with all sorts of ideas. Now as I cut the corn off the cob for David at dinner THAT was a different story--"Oh I WISH I COULD HAVE CORN"...Olivia lets think of things you CAN have not NOT have.

She practiced the piano this morning--and when we reviewed this evening she really had improved--since the last time I heard her over a week ago--no time at the keys being at Papa's.

I wanted to slip my arms around her today--stop her chattering--have her look into my eyes--kiss and hug and squeeze.

As she sat at the island with Daddy--reviewing her "words"--Dave got a taste of reading with Olivia.

What a trip--and thankful to be on it with her.

Monday, July 4, 2005 11:54 PM CDT

Moment.

Moments.

They can seem as if a year has passed--if painful.

Time is said to fly when having fun--but there is still a future before us, isn't there?

Cutting to the chase in my round about way.

Closing off of the pain and fear, but within it is incredible sense of belonging, strength and love.

Over the past month I've had to cut back on my "groups" with so much happening with a more social part of schooling in the summertime, my preparing art classes for the fall, church, and just basic routine life.

It always feels as if I'm missing a vitamin or some supplement in my diet of emotional balance and in many ways, spiritually as well when I am not able to participate either on a group level or on an individual relation.

And reading not "just" struggles but life decisions parents are having to make and hearing of children dying waiting for transplants or in need of them or...those who cannot have a transplant--

And for those who are in the aftermath of a transplant--the raw realness--it isn't a slap anymore, but a deep shot of pain which turns to numbness.

As a very strong mother (who if asked would say is tired, weak and weary) attributes this lack of feeling to coping.

Nothing new under the sun--nothing new much said, but felt.

*****************************************************

Having had a great Fourth of July with a sweet family sharing in our day, thank you.
*****************************************************

Sweet Samuel you come back to the States and we'll share a pony ride--somewhere.

To all our Oley attendees--So thankful you had a great time and were able to give support to one another--

And to all who are going to NS's conference; we canNOT wait to see you...

With our care and love and concern--but mostly hope for a new day.

Monday, July 4, 2005 11:54 PM CDT

Saturday, July 2, 2005 8:47 AM CDT

What a great time with Papa.

To be in one place for a good amount of time enables a sense of routine.

My Dad is a night owl so in the AM while he is still sleeping the kids and I read and worked through David's review in math and Olivia's reading. With Independence Day coming David suggested a book on it at one of our visits to the library so we headed down a unit study around July 4th, Revolutionary War--sprinkled with our history book which had us reading about John Smith, Myles Standish, John Winthrop.

Next we would unhook, dress (David making his own breakfast), we would head to "town". Having an early lunch hitting the library or other little errands then coming home. In the heat of the day Olivia would watch a video, we would read while Dad and David sat at his shaded picnic table by his "birds" and play games and read.

Olivia would say, "I'm going out with the boys"--and I would have a good afternoon nap. Yes!

The kids had a blast in the pen with the chickens, peafowl and geese on the other side of the fence too.

Dinner then back to the pond for our evening exploration. Fishing or walking the edge or the woods, etc.

All good.

I tried several times to capture the bull frog, even went out after Dave got here in the dark with a flashlight, but alas, I was either too timid or slow, but next time I'll have one to "observe". A word we've used a lot lately.

Olivia has grown to love Pocahontas (Disney is way off, but it is a great conversation starter). So she is now Pocahontas and David the great Indian chief.

Last night having Daddy here at the pond--dark so close the bats came out! Papa told us how to throw something near them to see them hone onto it--then collecting lightening bugs--beautiful blinking jar--kept Olivia satisified somewhat since David and Daddy slept in the tent, and she in her bed--not until we get a cot--otherwise her "venting tubes" will not drain!

Home today--nice get away--

Love you, Papa, thank you.

Wednesday, June 29, 2005 8:46 AM CDT

Right now the Oley conference is taking place. About two months ago I got a wild hair thinking Dad and the kids and I would rent something and drive to upper state New York. HUH? But after our visit in St Louis with the DeKolds it didn't make sense to complicate the summer. So here we are--Day 3 at Papa's. It is Papa's turn.

Papa doesn't have air conditioning and I'll have to say it has been delightful despite warm temps; we manage and enjoy. Our last two days consisted of a slow rising with a trip to "town" for lunch/brunch then library and then back. I love the little library and have found some great books there. A new tradition for sure.

Yesterday I detailed the van (WAY overdue--like maybe 2 years worth?) Olivia and Papa played in the shade. Dad had his little jobs then David and I washed the van--after a storm flew in--knocking the electricity out for a few hours. So off to town to eat--a nice breeze hit too.

While Papa pulled with his tractor two bushes out of his front garden, the kids and I took a jaunt back to the pond. There we saw a HUGE BULL FROG (one of my goals this visit is to catch one) and saw lots of tracks. Great timing of the day to be there. We all three took separate paths back; I of course lost, but had some quiet time on my way.

Olivia is doing great. She is still dumping a bit during the early morning hours but hasn't let anything slow her down.

Well, except maybe Mr. Whitey.

Monday, June 27, 2005 8:01 PM CDT

Resting at Papa's...

Great day.

Crayfish, chickens, cats, Papa's library and Yellow Dog Restaurant.

Life is good...and SLOW~

Thursday, June 23, 2005 5:45 AM CDT

After literally little sleep Tuesday night--last night's 6 hours straight felt like a weeks worth! And here I am awake at 5:15 which was good as Dave's alarm would be sounding. I unplugged that clock; I have NO idea how to TURN off the alarm and all week its awakened me--so I UNPLUGGED it.

That felt good. I loved seeing its little lighted numbers turn a blank black.

When one reaches her 40s life's changes do set in; I never really believed Dave when he told me 5 years ago, but I DO now. If I don't get movement in my day--and I'm not talking about endless jaunts up and down the stairs for laundry, supplies or whatever--but getting out and taking a good 3-5 mi walk--I might as well just hang it up. Where do people get time to do such things? Yeah, they make it, well, I've YET to find the recipe.

I'm a little harsh today, maybe the lack of sleep (one cannot catch up with just a 6 hour frenzy) or hormones or just the plain fact that sometimes the love for others squeezes you so hard you can't stand it anymore.

Having HAD to be at church last night because of the God and Country service this Sunday and the leading of a 30 member choir for it--just days away--what a blessing--so dearly bittersweet. As during orchestra Olivia came to me with her eyes dimmed saying her tummy hurt. She wanted to be held. Carried and close. So off to children's church carrying her, then remembering I forgot to get David out of the room with Ollie. So we had to WALK on OVER again--(In our 90 degree weather that happened to show up YESTERDAY)--I may have a layer of fat, but I'm strong--which is a blessing.

I thought about Angie's Noah--Nurse G. saying how distraction is a great pain controller. It did help and having kids around her who loved her, REALLY pray for her was a blessing.

But I could see she was in her shell--when one feels they are in a bubble looking out--without a voice.

Lord have mercy.

Ollie spent the night--dear Ollie. She is such a blessing to this family.

While Ollie and David ate Olivia was hooked up in all four places and watched Queen Esther--her favorite.

She wanted me to pray for her.

I had laid hands on her earlier and then just broke out into song--praising and asking--crying and I looked over there was David with his face down on the bed praying as well. Great tears.

I gathered David and swooped him into the big bed with me--there he whispered in the dark of night.

"In Heaven will life be fair?"

Reminding that there will be no pain--no tubes--

"But Olivia, she won't have her tubes? Her cute little tubes? And her poopouch?" Almost disappointed, but soaking it all in--I realized that he too knows how important all these extras are for his sister. HIS SISTER?

I have a child who requires me to watch her ever move--I'm not being overly cautious, just doing my job. I don't just have a medically fragile daughter but a son who has a medically fragile sister; it HITS him too.

When Olivia is in pain, Mama, I feel it in my throat. Lord have mercy. Mama, I think my tummy hurts too.

David, I hate that you have to eat by yourself sometimes while I tend to Olivia. Life IS unfair, and I could begin the list but...

Look towards the prize--Keep your eyes upon Jesus--for there is Victory in Jesus--draw near to what was done at Calvary--for not just you, Olivia, but all.

Lord, and your people cry unto you! For YOU are Holy! Humbling themselves to YOU! FOR YOU alone are HOLY!

Thursday, June 23, 2005 5:45 AM CDT

GOD and COUNTRY services at Graceland Baptist Church in New Albany:

9:00 AM and 10:30 AM.

Pictures to follow...

After literally little sleep Tuesday night--last night's 6 hours straight felt like a weeks worth! And here I am awake at 5:15 which was good as Dave's alarm would be sounding. I unplugged that clock; I have NO idea how to TURN off the alarm and all week its awakened me--so I UNPLUGGED it.

That felt good. I loved seeing its little lighted numbers turn a blank black.

When one reaches her 40s life's changes do set in; I never really believed Dave when he told me 5 years ago, but I DO now. If I don't get movement in my day--and I'm not talking about endless jaunts up and down the stairs for laundry, supplies or whatever--but getting out and taking a good 3-5 mi walk--I might as well just hang it up. Where do people get time to do such things? Yeah, they make it, well, I've YET to find the recipe.

I'm a little harsh today, maybe the lack of sleep (one cannot catch up with just a 6 hour frenzy) or hormones or just the plain fact that sometimes the love for others squeezes you so hard you can't stand it anymore.

Having HAD to be at church last night because of the God and Country service this Sunday and the leading of a 30 member choir for it--just days away--what a blessing--so dearly bittersweet. As during orchestra Olivia came to me with her eyes dimmed saying her tummy hurt. She wanted to be held. Carried and close. So off to children's church carrying her, then remembering I forgot to get David out of the room with Ollie. So we had to WALK on OVER again--(In our 90 degree weather that happened to show up YESTERDAY)--I may have a layer of fat, but I'm strong--which is a blessing.

I thought about Angie's Noah--Nurse G. saying how distraction is a great pain controller. It did help and having kids around her who loved her, REALLY pray for her was a blessing.

But I could see she was in her shell--when one feels they are in a bubble looking out--without a voice.

Lord have mercy.

Ollie spent the night--dear Ollie. She is such a blessing to this family.

While Ollie and David ate Olivia was hooked up in all four places and watched Queen Esther--her favorite.

She wanted me to pray for her.

I had laid hands on her earlier and then just broke out into song--praising and asking--crying and I looked over there was David with his face down on the bed praying as well. Great tears.

I gathered David and swooped him into the big bed with me--there he whispered in the dark of night.

"In Heaven will life be fair?"

Reminding that there will be no pain--no tubes--

"But Olivia, she won't have her tubes? Her cute little tubes? And her poopouch?" Almost disappointed, but soaking it all in--I realized that he too knows how important all these extras are for his sister. HIS SISTER?

I have a child who requires me to watch her ever move--I'm not being overly cautious, just doing my job. I don't just have a medically fragile daughter but a son who has a medically fragile sister; it HITS him too.

When Olivia is in pain, Mama, I feel it in my throat. Lord have mercy. Mama, I think my tummy hurts too.

David, I hate that you have to eat by yourself sometimes while I tend to Olivia. Life IS unfair, and I could begin the list but...

Look towards the prize--Keep your eyes upon Jesus--for there is Victory in Jesus--draw near to what was done at Calvary--for not just you, Olivia, but all.

Lord, and your people cry unto you! For YOU are Holy! Humbling themselves to YOU! FOR YOU alone are HOLY!

Tuesday, June 21, 2005 6:26 PM CDT

Summer.

This spring has been odd, but then I find myself saying that each season. With cold snaps then heat waves no constant weather pattern it feels strange to think it is officially summer.

Dave is in California blocks away from the beach. This is also hard to imagine; the ocean is such remarkable place. When he told me of the street by the beach and the shops and little restaurants; it was hard to not be a bit jealous.

But here we have had two very full days. I knew this week would be like this as next week we'll check out and go to Papa's and be quiet. It is something I need.

Tomorrow is piano lessons then church. Both have practiced a lot this week. Olivia is so determined and David has mastered two songs which gave him trouble in the beginning.

Reading, piano...summer.

Sunday, June 19, 2005 5:21 AM CDT

Chess camp ended Thursday with awards. David was SO cute; I knew he did well in something due to the big wad of bubble gum he was chomping. His group had won the Team Jeopardy. Each child received a neat chess medal, their binder, pencil and those who placed in the Blitz Tournament got a ribbon. David got 2nd place in his age group, the Pawns! So he enjoyed himself and has been quizing us over chess ever since.

It was a nice week to spend in Louisville catching up with Miss Donna and Miss Marsha--seeing the Highlands everyday was a dose of creativity.

Olivia is not 100%. Not that it is easy to tell what is total health with her. But yesterday was a hard day in comparison. She had belly pains off and on all day and needed to be vented. She and I will hang close to home today instead of church. Needed to sleep with Mama too; its all good.

This past week she tried to nurse, but Olivia and I have concluded that she has forgotten how and "moo time" is officially over! Although she's not nursed over the last 2 years daily and many might find it odd or weird to allow a child to wean herself--it was a natural totally natural experience. Olivia being the younger has been afforded the opportunity to do so. We've had such an interesting nursing career; I strongly believe that her interest in mother's milk helped her to grow for so long without any medical intervention and also, it helped pull her out of a very hard season. She went on strikes and would come back in full force; it helped her to maintain oral during the month we brought her home after surgery. It was a comfort; it was the link of before and after.

It was a total God giving thing.

David's patience with Olivia is endearing to say the least. One night I heard him telling Olivia about his chess coach. This coach in college had run 110 miles. Olivia then piped that she could easily run that and David said, "Oh, Olivia--that is like running to Cincinnati, well, 10 miles over running to Cincinnati." She continued down her path and David kept explaining it to her.

Friday we had our first of two initial art meetings here in the home. I was going over supplies, expectations, talking a little about the 3 images in art and Olivia raising her hand asked, "When do we get to draw?" OH DEAR that child! How I love her! And David showed me last night at the piano his drawings he did during art--it is his BOOK OF THE WORLD. Eifel Tower, Pyramids, Great Wall of China, etc. Encouraged him to use these as sketches and redraw and add value or color to each and label, etc. He was so excited to be talked to like the big boy he is.

David and piano. Mr. McGill lived UP on a hill--we say, Mr. DeKold lived UP on a hill--it is the CUTEST song about living up on a hill and a man who plays the piano--David is soaring. Reading,art and piano are top priorities for summer!

The other night we read a book on Helen Keller. One of my favorite Americans by far. What she overcame! What she was ABLE to do! It was interesting sandwiched between D and O how they each reacted. Olivia was very much into Annie Sullivan and the fact that Helen would hit her, etc. David was so sorrowful that Helen could not see the flowers in her garden and could not hear the music being played at the concerts. TENDER spirt, thank you LORD!

Olivia snoring beside me; praying that she has a better day. Hoping that she can. Knowing that it is all in the Father's Hands.

Tuesday, June 14, 2005 10:14 PM CDT

Day 2 of Chess Camp for David.

Olivia and I jogged over to the JB SPEED Art Museum.

What a treat to have her all to myself the little flower that she is.

We sat on the floor naming colors in paintins, discussing whether they were landscapes, still life or portrait...all of it.

The museum has a section called Art Sparks which is geared to the child.

There were a few intersting exhibits but Olivia and I waiting for our turn alone to dance in a little room. Our movement then turned into a psychedelic video of our dance. Separately at first then we began to dance together; joy.

Joy.

Crayon rubbings (which we had been doing at Grandma and Grandpa's) off of neat stamps and a weaving wall.

I loved just sitting with her reading books about artists to her.

My delight.

Color flower.

Tonight both David and Olivia helped me move mulch and Olivia said, "it would be nice to dance with flowers"--she gathered her bouquet and danced...

Allowing them to sleep together, I heard Olivia asking David about future and she gave the answer, and David so tender of a teacher said, "yes, Olivia, very good".

Joy.

SO thankful for my children, that they LOVE to be with one another.

Tuesday, June 14, 2005 8:53 AM CDT

Chess camp this week for David; he loves it.

Olivia and I spent time with Miss Donna--A TREAT beyond.

She introduced me to some new (old?) worship music.

Busy week--warm weather and flowers blooming.

Olivia is doing great.

Thursday, June 9, 2005 4:11 PM CDT

Time to hit Papa's house again.

This week has been incredible.

Monday was a treat with Elise AND Ollie here to help prepare for art classes here. We ended our work time with batiking, but more than that I had felt so overwhelmed and God supplied the hands to help and it was a success!

Tuesday was the first batiking class and with such a range of ages and group it was a bit chaotic. Batiking can be hard to grasp at first.

After a few hours after art the CURRYS stopped in on their way to WI. This has become an annual event. Then a visit from our ALABAMA friends--what a treat as usual. Pictures to come.

Soon after they departed Ollie was here again and joined us at piano lessons.

~Olivia's first piano lesson~

I wish I had video taped it. It will be forever etched into my heart and mind. Mrs. Lynette showing Olivia the very beginning parts of the piano--2 black keys and 3 black keys, Olivia responding verbally after EVERY word spoken--and her little fingers talking as well. It was one of the most precious pieces I'd ever witnessed. The view was most artistic too, her back mainly with little fingers talking--oh.

Off to lunch at my local mentor�s house where the kids enjoyed playing all in their imagination land.

ORCHESTRA~~Piccolo and FLUTE! How I HAVE missed them both!.

We are rehearsing for the God and Country service. I've been asked to head up a song with a group of kiddos. There are about 6 boys and the rest girls (10?) and to see those boys excited about singing--listening--really was impressive. Olivia has a new technique to achieve vibrato--oh dear, can you say, GOAT? It is CUTE at home, but?

That is our Olivia.

David humming coming down the stairs--time to ready for Papa's with a quick drop by at Darla's.

Jesus keep me near the cross,
there a precious fountain.

Sunday, June 5, 2005 8:35 AM CDT

~~Ballet Recital~~

Olivia BLINN! Dressed and ready to go--tense--will SOMETHING go wrong? How many times have I had her dressed for class and her Jtube would LEAK all over, etc. This COULD NOT happen to her costume! Just those sort of thoughts--over and over--then the hair, make-up all of it--so out of my pool of comfort.

The energy at such an event it WILD--so different from a music recital there is not backstage costume changes, make-up, all of that--just make sure you have your music and instrument--on yes, and reeds.

With a liter of fluids having infused and in keeping her out of the sun she was like a flower in full show. Bundle of (too much by a mother's standard:) energy and raring to go.

The recital was a big event with over 30 different shows, some solos, others big groups; entertaining.

But when those purple ballerinas came out--ohhhhhh!

It WAS monumental for Olivia, for ALL of us.

I'm in awe of her zeal.

Thankful for Mercy and Grace.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
A Daddy-O Hijacked Journal Entry�.
Happy Sunday Morning.
Olivia and I are home this morning. Sheila and David went to early church. Livvy is still sleeping. She is now hooked up to a 1,000cc bag of fluids (saline). Which is all to say; Olivia�s perfect run seems to be over for now. She has been dumping at night (is it a bug, something she ate, maybe the well water at Mom and Dad�s�???) and she is dehydrated. What it is in simple terms is just �life�.

When Liv is dehydrated, she is just wilted. It is just like a flower wilting before your eyes. So the goal for the day is to pump her up and hopefully rejuvenate her. She has a ballet recital tonight and we are hoping to have her in shape for that. Prayers for the day that we are successful.

Minor disaster last night. In the midst of the dumping that starts almost as soon as she gets in bed, I missed the urenal while emptying pouch last night. Oh man, I hate when that happens. It was a mess. At these times, �Team O� instantly springs to action. It�s almost like a NASCAR pit crew in motion. We are a team and in less than 12 minutes, Olivia is in the tub and the bed is changed and she is back where she was. This is one of Sheila�s shining moments; how she can be cheerful through this and not be mad (really mad) at me through it all is a testament. I am trying to learn such �non-crotchetiness� from her.

From the �It�s all about me.� department: Olivia�s perfect season �what a blessing it has been. For the first time I could start to envision (and believe) the miracle healing was possible and coming. Now I have to face my doubts. I still think that Olivia is buoyed by prayers from so many people � she is doing far too well for it to be anything but a God-thing. I am coming to understand the meaning of �Thy will be done�. (Note that it�s not �Thy will be Easy.�) While I cannot explain it; there is a thread of continuity through it all that we are aware of. It has to do with who is chosen for this task, what will come of it, the growth of each of us in the unit, and those that observe us, and yes, pray for us. It all fits.

It has been sooo long since I�ve journalled. I think Sheila�s entries are so much better than my own (I didn�t always feel that way) and for as good as hers are, I hate to overwrite them with mine. But this time, it has been a while since she�s journalled and the existing entry is a little old so here I am. Filling the void.

Quick closing thoughts, as I hear Olivia starting to stir:
-Note to Sheila: feel free to overwrite this when you feel like it (make it soon).

-Note to Marsha: yes � I did take the picture that had the lamp growing out of David�s head (thought I didn�t notice that one didn�t you?). I don�t know that I ever answered that one.

-David's cast is off, and he is also back to 100Gosh was it only Tuesday since it came off? Seems like a month already.

-Prayers for our friends who are hurting, You are all wonderful courageous people - continue to hang with it. We are praying for you.

-Hopefully I didn�t make my one fan cry with this entry.

May God bless us all.

Sunday, June 5, 2005 6:54 AM CDT

Tonight is Olivia's first dance recital. Already she's dumped close to a Liter of stool. She is behind starting the day.

Will put fluids on her.

And pray.

The guessing game continues as to WHY she is having such a season like this.

Asking God to reveal.

Wednesday, June 1, 2005 5:05 PM CDT

Home days--down days--time to recharge at home days.

David was slow yesterday and wasn't hungry before the removal of his cast. He looked green to me when the nurse sawed it off--and was extra quiet during the doctor's explanation of the dos and don'ts. Olivia piped in as much as she could possibly pipe and Dr. B. was most amused by such a chattering "smart" girl.

As we walked the hall to the elevator I tried to bring celebration into the moment but David said his tummy hurt--Pizza King did NOT sound good--uh oh, and beside a bathroom I took him in just in time for a good cleansing--vomit.

Greener than ever--and with a fever; David boy stayed in bed; Daddy came early so Olivia could indeed go to her dress rehearsal; beautiful ballerina queen.

So with a Liter of fluids she was in her top form; delighting and dancing--first in line, again sharing her bits of tid bits to anyone who'll listen. She truly amazes me how uninhibited she is--and how nothing deters her from doing what she wants.

It has been a while since she's been publically "hooked-up" and she took it in stride, not once mentioning it; insisting on carrying her backpack and 'wearing' her purse full of Polly Pockets.

After dress rehearsal Olivia summoned even more--a bike ride on SKYLINE with my running to keep up; she Olivia singing as she pumped up the inclines.

David was full of fever all last night and with his arm sore; he holds it like he did with a cast; he's been in bed most of the day.

Dr. B. said, give him a day or two and he'll be using it again, but no bike riding or wrestling--and we'll see him in a month.

So a day or two? For David that may mean a week. Cautious, careful...

Sunday, May 29, 2005 10:39 PM CDT

NO UTI, more than likely a flare; her body seems to have kicked back into shape--no fluids today, but she did hit the wall tonight at hook-up and fell asleep with my just touching her arm.

This has been by far the best trip here; the kids have relished their times with their Aunties and Uncles; Grandma and Grandpa--St Louis the city. I am sure Olivia is going to wail when we leave tomorrow. David has completely fallen for his Uncle Ken and it is most endearing how we all have fit together.

I've come away with a totally different outlook to this summer and so thankful for it.

Thanks to the many who keep us in their daily prayers.

Friday, May 27, 2005 8:37 AM CDT

Butterfly HOUSE and a NATURE Center! Heaven ON earth for David, Olivia, and Mama. Thank you, Aunt Janice; she took off work yesterday and drove us in her BIG WHITE truck--we all learned more on butteflies and look at them a bit different than before. It was a great review of what we've been learning in our butterfly unit.

Olivia said that yesterday would not have been as fun without, Aunt Janice. I love that they are making memories with their Aunt; it was so nice to have a friend along with the kids too.

Olivia has taken several steps back medically speaking; requiring replacement fluids, still her output is far greater than her input, needing to be cathed, belly aches, but the topper--one which I can do NOTHING about--

distention.

I hate it.

I HATE it.

I HATE IT.

But as always with Olivia WE TAKE HER CUE not ours and even though she is still sleeping and had a rough night we'll see how it bodes for Science Center today. Saturday and Sunday are designated STAY HERE days--

Last night when we were hanging on the back deck, Uncle Ken (what a dear--dealing with his own medical fragility) tossing with David (delighted to extreme measures)Olivia ran around the house--David did too, but I'm amazed, I really am at the amount of effort Olivia puts into her life. It raises the bar.

Ken gave us all yo-yo demonstrations; David in awe again.

This truly despite the glitches of frozen TPN, spilled stool, and all Olivia is enduring has been one of the best trips here (for me)it is a sigh of love to see the kiddos enjoying their grandparents, aunts, uncles, sitting at the table with someone else gladly serving every command--(Oh, yes, we've had to have some straightening out) but the memories.

To the Moms who are in the memory making business--to the Moms who can see the slightest everyday triumph--
and for those watching and waiting for the tilt to go in favor of their child--

I love and thank you for your continued support, care and love.

Thursday, May 26, 2005 0:01 AM CDT

WHAT A DAY!

Started out with garden walks--Grandma's and Aunt Janice's...the kids trailing along collecting all sorts of plants. Glorious.

Relaxed and peaceful.

But then. . .

Of course!

Nurse Gerry to the rescue! She called letting me know the order for urine culture was being faxed to the nearest hospital lab. But in cathing Olivia I barely got enough urine. She had just voided prior. Off to the lab and then back to get TPN out and BAM! Frozen bags AGAIN, but 3 were salvaged. Olivia's pouch clippy came off--at that point I was ready to sit in the circle and NOT move.

But the night ended delightfully with Olivia and me working on the short a sounds.

For really the first time--just hit me--as I was typing an email to David's piano teacher soon to be Olivia's--that I haven't envisioned Olivia reading, playing the piano, advancing...it is as if she is frozen in my head, but not anymore.

She IS able and has lept boundaries over my head and around.

Wow!

My little girl--is.

Tuesday, May 24, 2005 9:49 PM CDT

We made it! Only 5 hours--two stops--both pouch related and unhooking fluids--we made it.

Here it is peaceful; David and Olivia's chattering is gathered by two grandparents in love with their D and O.

We got to see the wild turkey; I can't wait for the garden walk tomorrow--and to see Aunt Janice's too.

But on a somber note; Olivia is not 100%, and I do NOT regret coming, but am a bit concerned. Will check out options tomorrow as I may want to drop off urine. It was dark all day--gave her 500 in fluids and she had to wear both bags all day--and still there was leakage around J. With only getting a small amount (for her:) of TPN, I increased the rate so she'd be getting over a hydration level and will zap her with more fluids tomorrow right after TPN. I'm sure there is a technical term for that, but...I'm at loss right now.

I have to say; the future really looks foggy--after the last few days. Not having her 100% can cloud one's perspective rapidly.

Monday, May 23, 2005 9:49 PM CDT

GRANDMA! Tears dropping for Olivia's cheeks to her shirt--she cried from the airport to the library. David howled with her as well. At the library we chose books for the summer reading program and Olivia came to me several times saying certain things reminded her of Grandma and how she wished she were there. And I got a loving hug.

But the anticipation of tomorrows journey west has swept away the sorrow, although it does come in waves for Olivia still, but the thought of Grandma Bert reading to her appeals nicely.

So we have packed 3/4 of the truck--sardines we'll be, but what fun we'll have! Listening to books on tape, Schoolhouse Rock, talking--singing--they know MAMA doesn't stop unless a pouch needs emptying or a little boy HAS to go...

But special prayers, as Olivia has drainage which has made red raw skin--stool watery--no absorption--just a little off--Daddy thinking maybe our trek should wait a day; I tend to agree.

Oh SIGH!

Sunday, May 22, 2005 10:56 PM CDT

May 22nd DID come; Olivia sang in the "preschool choir" this morning in church--what a darling--although I didn't see too much of her as I really had to concentrate with signing and singing.

And we came home to still just 2 butterflies but did see one of the chrysilis shaking had the video cam out hoping to tape the birth of the butterfly, but it waited. During David's FIRST piano recital this butterfly emerged.

The recital was fresh and entertaining. Starting out with one of her more advanced students, Mrs. O knows what she is doing. Her younger students beginning learners to highly advanced students. David popped up, did his bow and did WELL! He has a nice touch. And Mrs. O said something about even with a broken arm--and how he started back to playing with both hands after only 2 weeks of breaking. Sweet. Some of our "art family" also take from Mrs. O which made that part of the fun to hear friends playing. I was most impressed and Olivia would ask some of the more intriguing pieces' names, like "Dragon Hunt" and then began drawing a parade of dragons. She did so well sitting with bobbing head to the music.

Our last dinner with Grandma as tomorrow she'll fly back to California; David is most distraught. Olivia had Grandma tonight to sleep as David had her the FIRST night.

But Tuesday after David's piano lesson the kids and I are OFF to visit our family in St. Louis--there I hope to slow SLOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOW down and regroup.

Visiting...thinking...recharging.

Friday, May 20, 2005 10:44 PM CDT

Trickles.

Here and there it falls, it?

Like glitter a child will shake onto his paper.

The sparkles sticking.

We have chyslids.

Mom and I planning a day trip; David exclaiming, in his true David tender form, I'll not miss this for anything.

This. The blooming of our 5 butterflies.

Drawing an analogy of the caterpillar to butterfly, David true in spirit said that as a butterfly--being new in God would then go from flower to flower, like country to country...OR...house to house to tell others about Jesus.

I can see the process--THE transformation from a crawling creature bound to the leaf it devours to a flying masterpiece which...is able.

Friday, May 20, 2005 6:27 AM CDT

What a spring this has been! Busy! But it is coming to an end with this Sunday; David will have his first piano recital and Olivia will sing in church. Still a few other committments, but slowly things are settling.

Last night for homeschooling meetings for this season and we were able to show our art work from this year. I am (in a good way) so proud of how hard the children worked. Will hopefully have pictures up soon. I can't even begin to express how EXCITED (my word of the month) to start classes. How precious this time will be not only in working with students, but their mothers and learning from them in many ways.

During the devotional part of the meeting Olivia fell asleep in her Daddy's arms. How glad I was to see Dave come in--my knight. Everytime I see him in places I'm not used to--he is like a beacon of light--all is well. It was great for him to meet some of the ladies who have come to be friends this year.

It was storming last night--huge electrical type; which hindered David and me leaving. But it was a blessing to help break down the room. I am amazed at Mrs. W. giving to not only the church but to the homeschooling community, not even mentioning her two grandsons. She is an amazing part of our world--Dave and I both agree--she is a keeper.
But like all storms--there was a degree of excitement--and David and I ran in the rain to the van. There he told me how he lent his umbrella out and stayed with toddler while the Mom got their car. ((YES, DAVID!:)) He was so proud.

So many parts of yesterday--Olivia had her first time BY herself--with a friend--ONE on ONE yesterday. She was so delighted; I was 5 minutes away.

Great day.

Thursday, May 19, 2005 0:39 AM CDT

Received Olivia's report from Dr. K which comes after each clinic. Could barely read it with the tears distorting the letters. Such a great report--a couple of words I've yet to look up and little reality slaps to remind me that she does have special "needs" like a central line catheter to receive her nutrition--which is only for 50ow. Funny, too about her voiding 3-4 times a day but still having her overnight catheter for her urine.

Olivia is now giving her own meds. Daddy draws them every morning and I remind her; then she puts the syringes back (as Daddy has trained her well).

She is talking constantly about her Kindergarten shots and how her life is so difficult because of such things.

Will get her in earlier than later as I am SURE she needs glasses.

Her pouch problems seem better, and when I mentioned it; I said maybe because you didn't move and kept your hand on it, she said, "No Mama, because we prayed, remember?"

Sunday, May 15, 2005 8:24 PM CDT

Glorious day.

Leading worship and seeing my son and daughter on their faces praying during prayer time; thank you, Lord.

Off to play in orchestra first time in a while; but not until I drug Olivia over to her age group class; she didn't want to be separated from her brother. Playing in orchestra felt like I had lost 200 lbs as it was so EASY--worshiping without having to THINK too much--yes, it was nice to be back with flute.

Practice with the preschoolers; Olivia did so well--it is a sweet song. So precious to see her there; can it be?

I do believe
As I feel the wind blowing

I do believe
As I gaze at the stars

I do believe
As the ocean is foaming

I believe in WHO YOU are.

I do believe
As I see the many nations

I do believe
As I watch the eagle soar

I do believe
As I wonder at creation

I believe in WHO YOU are.
Jana Alayra.

The signs for this song are beautiful.

Daddy ran home with Olivia to meet up with Grandma while David, Kacie and I went to a quick lunch provided at church, then the three of us played for the folks at Bennett House.

How I love to sing the hymns; and how much they appreciate it. I told Kacie afterwards; she had major blackmail on me--as I played piano--sang--all at the same time--

All for Him.

Now Daddy and David are off mailing letters, stopping to get milk (Dave is so good about helping with this sort of thing:) while Grandma, Olivia and I chattered, got the chrysalids into the butterfly pavilion--and prepare for an evening movie.

This week is it all for ALL three of us--teacher, and students; every week is ALL for Daddy. But David will finish preparing for her recital on Sunday, Olivia will sing in church next Sunday and both will be participating in the AWANA awards Wednesday and (tears) they'll be showing their art at the last HnH meeting. I can't wait to see all the students work. Very pleased with what we accomplished this year and looking forward to pressing on next year.

God is calling so I won't look back; His WORD is keeping me on the TRACK...

To Jesus--

oh

TO JESUS!

((OLIVIA's)) reduction in TPN so far has gone well; EVEN with her having sniffles and a cough. Praises! We have clinic in 2.5 weeks. Anxious to see how things look then.

She continues to nibble, drink plenty--talk and grow. She did remark it hurt her feelings when I said that she jumped on David's arm and it broke; so I had to change the wording.

We continue to live in this miracle!

Wednesday, May 11, 2005 1:52 PM CDT

Night and day.

Fear to faith.

Since last September when I walked into Olivia's Cubbie group toward the end of their first meeting and saw a leader trying hard to lead music. . . God has been working miracle after miracle in our life.

At that point I said I'd love to lead the music--I was so afraid to take a step out. Then an email came over the homeschooling group looking for affordable art classes--another door opened--into a beautiful friendship not just for me, but for my children. September which is usually a month in which flowers fade and drop to the soil--our family was just blossoming. Over the course of time God moved me into leading David's group which was a blessing to be a part of his group work as I've always been available for Olivia. Slowly our petals opening.

Each clinic visit we came back with nothing but great reports, no longer did we have to keep the laborious in and out sheets, and Olivia's need for replacement fluids no longer.

Playing in the orchestra learning the clarinet, but now going back to my first love as my season with the reed instrument is over--just as Olivia's great season could turn around.

Olivia playing basketball, taking ballet and dance--her last dance class teacher had their costumes--purple. Slipping them on then their tu tus--excitement building and one of the little girls' clothes underneath bunched which made her look like she had TUBIES! She exclaimed--"I've got TUBIES" and I immediately checked Olivia's cue--and she was DELIGHTED and they all jigged a "tubie dance"--acceptance.

I reassuring the mom it was a good thing--healthy--and that I'd follow Olivia's feelings on such a thing--sigh of relief.

Time.

Sitting quietly during David's piano lessons, blessed by the care and godliness of the teacher.

Riding bikes every day, feeding the hens and bunny--imagination.

Being asked to lead a "children's choir" for God and Country--an opportunity to "be" with the children at church, but to make a difference.

Care.

Sunday AM leading not just Olivia's preschool class in worship but also started recently leading David's age for their Children's Church. I have David AND Olivia (although she hasn't officially graduated yet) in there and to see them respond, listen--sitting next to one another--so careful. Precious.

Love.

And today I think it hit me how far we'd come. We walked into church so I could tie up a few loose ends; David and Olivia (mainly Olivia chattering constantly) gravatated to Miss Lindy (a friend of David's mama) at the desk--I working with Miss Becky (God's sweet gift on this earth) and then my catching a chat with Miss Carlee (music and visual artist)--all so different--all working at this church--accepted.

Energy.

To be able.
Able. To be able.

I count it a priviledge to be ABLE to serve--in any capcity--to use my gifting for His glory--

To give it ALL back.

Three years ago Dave and I barely kept up with mowing the lawn.

To God be the Glory Great Things He has Done...
SO loved He the WORLD that He Gave US His Son...

Tuesday, May 10, 2005 5:46 PM CDT

Cutting back on the TPN! Olivia is doing great.

Mother's Day was a blessing out at Papa's house; I love that place.

Physically exhausted from moving 40 lb bags of dirt; excited about the next few weeks and this summer--not to mention next year, but looking at this moment to enjoy.

Saturday, May 7, 2005 2:28 AM CDT

Some days are just like that.

That cup is over flowing feeling.

Could be that Dave has taken David and Olivia to the park (up here on the "hill") then to dinner out AFTER coming home from work. The kids and I have been attached--something that moms who keep their children home with them understand--I'd have it no other way--seeing their lightbulbs go off--or their asking countless questions--but its nice for them to have another teacher--Daddy. His perspective is unique to him. Oh, how I love, Dave.

But alas--they are home--
AND THE very first voice I hear is..."MAMA" by Olivia.

Saturday, May 7, 2005 1:55 AM CDT

Saturday, May 7, 2005 1:54 AM CDT

Friday, May 6, 2005 8:48 PM CDT

Friday, May 6, 2005 8:30 AM CDT

Clinic.

Dave wanted to discuss the possibility of starting J-feeds(formula into her Jejunostomy, aka J-tube)--I too had entertained the thought and mulled over different ways to accomplish this, but never had peace. Overnight feeds don't work well for Olivia; I didn't want to put her on a pump during the day after the year of freedom--and with her doing so well to boot.

She is eating remarkedly well some meals surpassing David and some skipping, but she is eating--a miracle.

The plan is to lower TPN from 1650 ml per day (night) to 1250 ml. Thankfully lipids are given separately as the dose has been changed from every day (night) to only 3 times a week. We've been at one point not doing lipids at all.

Dr. K. said Olivia has a miracle belly--we believe it is happening one day at a time.

Olivia had a bit of a mouth yesterday when asked about her birthday; saying Mama didn't do anything fun for her on her birthday.

Later when we were talking it through--she in those quiet tears asked, "David? Whose team are you on, Mama's or Mine?" Whoa.

I did my bit and she was too "hurt" at that moment to get it, so later--(Thank you LORD)--I began to tell her how God has given us each gifts. And there is one who wants to steal those gifts and use them for his own gain. Boy--DID she get it! And how this lesson taught me! Satan is trying so hard to STEAL! It is subtle, but so very evident.

Wednesday, May 4, 2005 11:28 PM CDT

Give me eyes to see You.

Ears to hear from You.

Feet to follow after You.

God is moving.

A trip to drop off labs ended being a full court exploration of "David's" hospital--a week ago. Triage to outpatient surgery--we talked so much--then to pick annual flowers for their gardens--then lunch.

Clinic tomorrow.

Many prayer requests, My brother, Hope, Natalie, Zachary, Allison.

Saturday, April 30, 2005 5:23 AM CDT

April!

What a full month--a four night hospital stay, David's broken arm, Grandma visiting, OLIVIA's week long celebration birthday week--how the blessings wash over us.

David has done so well with his arm; the surgeon suggested a sling but remarked that most kiddos keep it for the first 24-48 hours, but David is wearing it diligently as well as making sure not a DROP of water hits the cast. His piano lesson went great as his teacher (a veteran teacher) didn't bat an eye other than to make sure David was all right--and made revisions to fingering as his FIRST recital is MAY 22nd!

We have ANOTHER visitor with us--FLAT STANLEY! Our dear friends from Idaho have Flat Stanley making rounds to our TPNsupport friends--he is so cute! We can't wait to share with Sean all that Flat Stanley sees and learns while in Floyds Knobs.

We had a great school week in that we did table school--David writing sentences, and doing a unit study on butterflies as we wait for our caterpillars to arrive and reading daily from our Children's Story of American History book. We've covered Christopher Columbus, the Cabots, Balboa, Ponce de Leon, and De Soto! It has grown to be my favorite time--all cozied on the couch reading with globe--then a verbal quiz! Olivia really holds her own--Florida--Spanish for "flowery"--sounds like a name Olivia would pick for an animal. The butterfly study has me in a state of wonder--can't wait for NON rainy weather so we can go exploring for eggs and caterpillars.

So thankful for a leading husband. Last Saturday Dave went to the Men's breakfast at church where a gentleman spoke on slowing down. I think more than anything for me it isn't stopping the things we are doing, but slow down the pace--in all forms. Evaluate WHAT--WHERE--HOW we do things. Olivia and I were going to "RUN" over to the library to drop off books during David's lesson since Grandma was there to listen. After closing the door behind me I turned and there was my newly turned 5 year old.

She had already collected as many maple seeds her right hand could hold and was working on her left. The birds singing and the flowers blooming--it wasn't raining and it was morning in this little neighborhood. So we took a preschooler walk, finding squirrels jumping from tree to tree, peonies about to burst into bloom, iris already and stirred the dog choir.

Wednesday, April 27, 2005 8:26 PM CDT

Connected. Oh that is the understatement of the day.

David and Olivia enjoyed free time this morning only for Olivia to JUMP onto David's radius and break it--with her shin.

David is deflated, but coming around with a cast well past his elbow, no baseball and not sure about piano--was his left arm.

Grandma has been a nice comfort and Daddy came to the hospital with David and me.

So praying for the boy to bounce back and Olivia to STOP bouncing.

Tuesday, April 26, 2005 5:19 PM CDT

ALL DAY HOME DAY!

Great school day--taking a break to watch NEMO--as it was a RAINY RAIN day--and as I was cleaning out the computer ran across precious pictures of my babies. Still connected at 5 and 6.5 years old--sitting in the same computer chair playing the highly regarded basketball game Grandpa Jerry gave them. A treat.

Always connected I pray.

Learning about butterflies since Olivia received a raising butterfly container for her birthday from Grandma Bert. It is amazing how much they both know about these creatures! AND what they remembered from the ant study we did a while back!

Read about Balboa--I love reading history to the kids in novel form with our globe from Aunt Becca to help us find all the grand places.

So thankful I bowed out of the childhood home of Lincoln field trip; would rather go in June sometime with Papa Virg. It was heavenly to be home all day. Did I already say THAT?

Monday, April 25, 2005 1:11 PM CDT

~~B*I*R*T*H*D*A*Y PARTY~~

COLD and windy, but it was warm inside, full of dear children who seemed so shy at first, but I think fun was had by all. So thankful for new and old friends who stayed along to enjoy it with us.

Blossom Bloom a dear little clown of 7th grade age--one of my premier artists from art class added such a special touch! I want to have another party JUST so we can have her again! What a dear!

Kacie--and her dog, flute and just her overall friendship--Miss Elise and her friend--just fun.

Yes, Olivia received many flowers and will post picturs as soon as possible.

School is in full force as is the deeper cleansing of this house and our lives!

GOD is so good.

All the time.

ALL the time; HE is good.

AMEN!

Friday, April 22, 2005 8:27 AM CDT

APRIL 22nd!

This day means so much to us now.

Last year Matthew died on this day--www.caringbridge.org/in/angelbarneyboo--Darla's beautiful tribute to her son. I can't believe a year has passed since he has gone away. Please remember Darla in your prayers.

And 3 years ago Miss Olivia had her life changing/life saving placement of tubes, and ileostomy--TPN was started. There in the PICU she was so small, but thankfully Cincinnati Childrens allows for parents to go back to the children; I don't even think Olivia had awakened yet from her surgery--a mound of covers, with tubes coming out from everywhere--oh my--how far we've come. And how she took it all in stride at 2 years old. Never pulling at the new parts of her. I remember walking to our "old" room to get things to take to the PICU and how the GI FELLOW was asking me about David--it was so horrible. DAVID? I have a SON too? Thank GOD for my parents during this time.

Dave was so strong staying with Olivia is recovery; I had to leave--to a breath as it felt like a total body slam when I saw her.

And this morning she awoke with my lying next to her her arms so full of muscle and strength and with the tubes coming from her--her G bag, J bag, Urinary bag and her TPN line and lipid line.

We are still in the early years (I pray--as that would mean a LONG life for Olivia) 3 years and running. 3 years of learning about pumps, dumps, tubes, pouches, a new community of medical terms, meeting the most remarkable families who have paved heroic paths, and with it the tears and joy running deeper than ever.

I want to personally say a thank you to Olivia's doctor(s). One who diagnosed her and handled us with such care--as well as his nurse. And to our Dr. K who has worked hand in hand with me--his knowledge surpassing most and his heart as big as it gets. Coupled with the worlds best nurse doesn't hurt either. We love Olivia's doctors and nurses.

And to her brother who knows all the terminology and is arms, hands and feet of love many days in helping; who has the most tender of hearts and shares our concern over his sister. We know God is preparing him for a special journey. Precious boy.

"Daddy-O" a remarkable man, husband and father. The most patient soul I know and although works intense hours still is there for us all. Who KNOWS his daughter's care and CAN care for her. What a blessing you are to me, Dave.

She is our living miracle today.

Thursday, April 21, 2005 8:25 AM CDT

When asked last night Olivia almost said, four and a half, but caught herself, maybe that was the first time she said, I am FIVE.

Dear days, with Robin, Samuel and Olivia's cherished Rachel stopping in on such a beautful sunny day, Papa coming as well as he would not miss her day.

Thinking back 5 years, how Sarah Krauskopf was a part of that day with humor, care and wisdom. How I wish I could see a birthday greeting from her on the guestbook.

Grandma in true Lodgie fashion whipped up 50 some cupcakes and D and O iced them for CUBBIES last night. What do I do without my mother's help--HUMOR--care and wisdom when she is not here to keep ME in place?

Then after a very full Wednesday night--David and Olivia already carrying two plants from her friends unable to attend the birthday party--opening the van door--

Beautiful azaleas in full red blooms, two balloons and a card. The card (as Dave loves to give) was straight from his father's heart; I so caught up in each word, Olivia just anxious to KNOW WHO left such a load of goodies. OH DADDY! She held them in her lap as a princess, her car seat her thrown and I the driver.

I love you, Dave.
.......................................................

Monday, April 18, 2005 7:25 AM CDT

Arrived home Saturday night with all their goodies from aunties to grandparents; Olivia wearing her dress up sleepers and was so proud of her violet purse from Aunt Lynn. David could not wait to set up more of the train set. Dave and I unloaded the trailer and back of truck as we were given by Aunt Janice her dining table which sits maybe 10 people when all let out and we have it ALL let out now for fun. And with that came a prize piece of their Aunt Grace and German hutch, beautiful whimsical, fun!

So yesterday was filled with MOVING in as it felt like since moving pieces here and there.

Kinder-2nd graders have had really no one leading music on Sunday mornings and with a new children's pastor coming in June I felt led to fill the gap even until then. But with David being in a asthmatic--allergy attack (the OAKS are in bloom!) and Olivia's TPN still running I ran down and "did" music then ran back home and got everyone ready. David in SS class Olivia in Planet Praise and I did music with the preschoolers, who I'll miss them for I do believe I'll graduate with Olivia, but hoping the kids and I can come back and sing for them and even the toddlers.

David, Olivia and I (I was hesitant to take Olivia as she is TIRED and can be a bit of a grump)finally made it to the Bennett House. It is an assisted living "palace" as Olivia called it which I had called a couple of months ago to set up times for us to minister there.

We have NEW friends! David, who is 90 years old sang right along with me as I played the flute--then would sing the verse afterwards. What a blessing. David Peter played his piano first then D, O and I sang Jesus Loves Me, and Day By Day by Jana Alayra (love it) and then I played a variety of old hymns on the flute and would sing, and "Oh, How I Love Jesus" I played and the kids sang and everyone tried to sing, bless their hearts. Olivia wanted to sing that again so we did, then David sat at the piano saying he had ONE more song--without a book? It was from the Dozen a Day--5 interval scale--it was so cute, a great ending.

David and Olivia were pretty much quiet. I will lead by example; it'll be good for them to see their Mom doing something good--maybe they'll pick up on the good parts of Mom too--not just the growling scowling parts.

Excited to see our Friends again next month.

NOW--TODAY GRANDMA LODGIE COMES! A MONTH OF HELP with laundry, and I PRAY to start TOMORROW on working out. I hope to hit the gym daily while she is here getting a jump start. THE KIDS are SO excited--

AND WEDNESDAY--

OLIVIA'S BIRTHDAY!

5 years.

How can it be?

Monday, April 18, 2005 7:25 AM CDT

Thursday, April 14, 2005 12:58 AM CDT

Olivia was in the truck ready to go an hour before they actually left; she awoke saying, "who is coming over today?"--

YOU are going to see Grandma BERT and Papa PETE today--smiles.

David and Olivia love their adventuring there; David remarked the other day that he could not wait until they took 64 WEST as we were going East.

Dave, the best husband for me, taking them allowing time for regrouping on every part of my life hoping it happens!

How it warms my heart to know they are seeing their family, how much they have needed hugs and kisses from their Grandparents, Aunties and Uncles...
````````````````````````````````````

Being a child of two remarkable public school teachers, I saw the attention, care and love my parent shared with their students. There were times I grew jealous. I found that to be true of David (not Olivia) during this time last year with my time spent with Matthew.

"I have learned that some pain cannot be healed, but must be endured.
I believe our Higher Power will help us to endure and find peace. I
loved the boy with the utmost love of which my soul is capable of and
he is taken from me--- yet in the agony of my spirit in surrendering
such a treasure, I feel a thousand times richer than if I had never
possessed it."
William Wadsworth 1812

Tuesday, April 12, 2005 7:32 AM CDT

Honestly, she did have a blast.

Sunday was such a blessing with our neighbor girls whom we've not seen for almost a year came and played with David and Olivia.

On the teeter totter I heard Olivia telling 12 year old Sarah, "Now you might feel left out about this, but I get to make a wish, like have a playroom in my closet like my Cousin Carolyn or something like that". At that moment I had to hide my face as I was about to explode with laughter. I was preparing the earth for D and O's garden; their VERY own garden, to which Sarah replied, "Oh, yes, I've heard of that, I think it is smart to pick something you'll have for a long time".

So it seems Miss Olivia's little wheels have been turning.

It was fairly nonstressful at the hospital; having to let go of what the week was supposed to be and live in the moment of playroom hours, room service, art, what movie to watch at night--snuggling, fixing hair--coping with and teaching nurses, working on manners all the while--it was a good thing. Queen for the Day in the "playroom" was a hit and there it all came tumbling down on my mother's heart.

Of course we were the first to arrive and my outgoing girl showed some shyness when asked if she wanted her nails painted and she grabbed the first bottle without looking at it. So I stepped way back--receiving that artists' view--of the (some) veteran girls rolling into the room with their poles as escorts, most I'd never seen another adult with them, their hair not brushed in days--aching for their loss of that time beginning into their teenhood. At that age where they hid their excitement (unlike Olivia who beamed as if she indeed had been crowned Queen for the Day), after visiting what used to be the craft table--now makeup and nail salon the girls came away almost with a clown like face, but smiling for the first time since our stay. Each were given a tiara and a gift and all wore them proudly.

Olivia wore hers and fanned herself with her new PINK feather fan as I drove her back and forth along the ground level. I determined to get some sort of exercise.

It was like a harsh COLD slap in the face standing next to Mrs. Ohio--her blonde hair just right and nails perfectly shaped and well, you get the picture. The rest of us just thankful to have had a shower! But she was most gracious and kind and asked (after filling out a consent form) if Olivia and she could be photographed.

There was a young teen and her mother across the hall from us; I found it most endearing that as they walked the hall it was the daughter who swung her arm around her mother--I pray that will be daughter and I in years to come.

Saturday, April 9, 2005 9:54 AM CDT

Olivia is home! She and Daddy arrived earlier than anticipated on Saturday! Immediately she hopped on her bike.

David and I arrived home last night; leaving Daddy and Olivia to finish up the stay; WE PRAY.

She is already in CRC getting ready for her iron infusion and when I talked to them she was ordering ROOM SERVICE--I think yesterday she had 3 grilled cheese sandwiches.

Tuesday she was 18.5 kg, Thursday 18.3 kg and Friday 19.1 kg! She is packing on the pounds as fast as I AM!

so thankful to be with David.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Thank you Mrs. Jo for posting this--so what was needed this night--

Coins
By Jean Chapin Seifert

Jean Chapin Seifert, �Coins,� Ensign, Aug. 1988, 53
Little one,
remember when I took
the five brown pennies
from your hand,
and in their place
I put a gleaming silver dime?
To my surprise,
you cried with rage�
replacing five with one
could not be fair!

I smiled, then,
at childish reckoning �
until I thought how often
that our Father takes away
the copper blessings
from my hand
and in their place
He puts more precious ones.
Yet, angrily, I count myself
defrauded by the gift.

I have not understood
Eternal reckoning.

Thursday, April 7, 2005 10:16 PM CDT

Olivia woke with glassy eyes and a heated body.

No iron and no discharge, full round of labs and Olivia had to be stuck. Screaming.

After cuddling she was extremely adorable talking with all the nurses; we taught a student nurse how to cath. Usually I would do it, but Olivia and I really liked Nurse N. and IF anyone is going to learn to cath, O is perfect as she easy. We taught her about G and J tubes--it is all a part of Olivia learning how to "teach" as well, very interesting.

Discovering for tube changes, flu shots (unless David is also on the receiving line), or anything remotely close to a "stick" it is best to not talk about it but just tell her about it moments prior.

Dark cloud lifted minutes after Olivia's much anticipated tube change by Nurse G. yesterday. Even at the zoo she was disengaged to a degree. But she told me last night she was glad to have a clean NEW tube, of course, I told Nurse G that today and O was playfully silly about it all.

She was telling how the peacocks were showing off, and for anyone who'd listen and there are plenty here on the adolesence end where we are--they are all giddy about having an almost 5 year old, what a delight they find in coming into her room.

No playroom with her fever, but we managed school and...

most of all...

Daddy and David VISIT and with an added surprise from PAPA VIRG since he was in town for a REDS GAME!

Dave makes hospitaling fun in his own way--strollering--we all went exploring through some old digs, as much of it has been torn down, just reconnecting as a whole. I tend to feel so disconnected from home, our local world here; but to have Dave and David here really helped--and having laptop to talk to a couple favorite support friends, helping to keep things in balance. I'm determined to not feel left out--alone--how can I be? For Thou art with me...

Letting fears go--For my hope is WHERE YOU ARE, JESUS.

Prayers heading for the families in need--and for the dear ones who are grieving in ways no one could ever imagine unless having lived through it.

Love you Papa for coming by--Davidboy I miss being there with you and for you and DADDY--I love you!

Thursday, April 7, 2005 8:34 AM CDT

Thursday morning update:

Sheila just called. Livvy is running a 101.5 degree fever. Suddenly the whole game changes. Still we�re hoping this is not a line infection. The cultures should be back today so we will know more, I suppose. Also looks like they won�t be coming home today, in fact D.P and I will be going up there.

I always feel funny asking for prayers. There are so many in our circle who are sick as well, usually more so. And usually Olivia is doing so well. I feel like my Olivia could use up the prayers of a whole church. I must come to the conclusion that prayer is unlimited, that it is not a �zero sum game� in that if Livvy gets prayer, someone else does not. Both prayer, and the blessings that it brings, surely flow freely. I also wonder if my own hesitation in asking for prayers is really due to the humbling nature of such a request; it�s an admission that I cannot by myself bring the outcome I so desperately want. Nonetheless�..Asking for prayers for O today.

I�m sure She will post as soon as she is able to, but they are on �Hospital Time�. In the mean time I�ll update as we learn anything.

-------------------------------------------------------
Wednesday, April 6, 2005 9:31 AM CDT

Olivia in the playroom--while I sped up here to get passes to the ZOO! We are 'IN' for another night--waiting the full 48 hours after blood and urine cultures drawn.

This so far has been an easy stay--she is NOT hooked up to ABX and playing, being together--excited about the zoo.

Miss my David boy--and Dave man.

Wednesday, April 6, 2005 9:31 AM CDT

Olivia in the playroom--while I sped up here to get passes to the ZOO! We are 'IN' for another night--waiting the full 48 hours after blood and urine cultures drawn.

This so far has been an easy stay--she is NOT hooked up to ABX and playing, being together--excited about the zoo.

Miss my David boy--and Dave man.

Tuesday, April 5, 2005 5:23 PM CDT

Praying just routine.

Sunday night Olivia vomited, but we were able to redeem the day--with dance class.

And I slept next to Olivia again last night to make sure she would not start again, only to wake up to her feeling warm.

The temp sends us to Cincy because of Olivia having a central line.

We were able to connect with her clinical nurse and skip ER and get Beauty and the Beast in--our first viewing together.

I feel it is viral; she has nasty cough but, gotta follow the rules. She is in the "teen" section which is pretty funny as everyone is so excited to see such a little star--but she watches the clock to hit the playroom--couldn't wait to get rid of me.

But please, pray not only for Olivia's safety while here and nurses handling her line, but for Olivia's doctor as he seemed very down--

praying for the sick children here--they are in abundance.

Monday, April 4, 2005 10:13 AM CDT

Sunday--full of sunshine and the SON.

It was a marvelous family day here; Dave took the kids home after church as I had a meeting for those working with the children at church--what a blessing it was.

And on my return my family out skating--then Daddy-O fixed my bike and the kids and I rounded Lee a few times (more than a few!), finally cleaning up Christmas lights, blowing leaves (why have I NEVER used that thing before being surrounded with OAK trees--leaves keep me BUSY), mowing--all of it--felt good, kids drawing with chalk outside and pretend riding in the old truck while Dave and I did the more dusty and "noisey" stuff...

I peeked out at the kids as I started dinner, there on the blacktop with extensive drawings--so normal--so normal...

But the slap of medical reality hit pretty hard last night right after hook-up and David called "MAMA" and Dave and I both ran to O's room and she was gagging, vomiting air and little else Dave syringed her G-tube and back to bed, but only to have her again in need.

So I slept there next to Olivia and she would cough and then gag, vomit air and little else all night long--several times an hour or sometimes taking off an hour. She is a tired Ladylove today, but thankfully we have nothing planned until later tonight.

Her tummy did hurt and she said she was warm--but today it seems to have subsided, the pain and there is NO temp--sigh of major relief.

Outside sunshine and air--exercising the chicks--afternoon school, then HOPEFULLY dance and baseball...we shall see.

Saturday, April 2, 2005 9:35 PM CST

Wish I had had the camera, Dave held the kids' two baby chicks who are NOT so baby at this point, brinking on adolescence if you ask me, with their big girl (praying not boy) feathers and trying to fly OUT of the box. Cheeping their cheeps then finally settling into their night trills of going to sleep music.

David and Olivia invited to a birthday party of their David Potts at THE MOST FUN place in Southern Indiana if you are 5, 6 and even 7 or 8. Tumblestation! Climbing, sliding, jumping and Olivia came to me with her G-tube stopper missing--it had broken off for some time but we've been VERY responsible about remembering where we put it when using the G-bag, but today, it must have popped off (as it no longer is attached to the tube) somewhere during sliding and climbing and Olivia distraught thinking this was the end of her fun, but I ripped open a NEW tube and bit off the stopper and plugged up her tube then taped it. Smiles and happiness.

Hoping to post pictures, SOON.

Friday, April 1, 2005 6:03 PM CST

April 1st--April is a big month for us, Olivia's 5th birthday swinging around as well as her 3rd ANNIVERSARY of having major surgery (her tubes placed, TPN started and ileostomy)!

THREE YEARS! How far God has stretched, taught and kept us we'll never know until we are gone from the earthly cares. How deep He has shown life's paths through this journey and placing the right people along the way, beside us, some ahead and behind, but all sure to be gifts from Him.

Olivia's anniversay date (April 22nd) is also the day Matthew died. They are linked.

But into the now, THE today of April 1, 2005, art class where David completed another symmetrical painting, this time using only warm colors and Olivia's full painting only 1/2 the size, but seemingly more advanced than last weeks. The students so dear and have been all along, but I hadn't opened myself but have now and am enjoying the flood of the relational parts to the class. One boy (a year older than David) came and held my hand as I talked to another student--his way of telling me he wanted my attention but not interupting. Cool stuff like that--tears, thank you Lord, thank you to those who kept telling me take this step; it has been a great one for the kids and me.

Then to library for a drop off of the "dam book"--as I said that I chuckled and again flooded with thankfulness that my children would not confuse that with a different adjective.

But glories of all glories, the eggs in the incubator had hatched 3 chicks and David and Olivia stayed by asking questions as if they had never seen chicks before. It was precious to see their first moments of life.

On my game, I had prepared "Grocery Hunt" worksheets for our trip to Kroger. Each having their own questions; it took math, reading and writing into life practice.

And now, my favorite time of the week, the children snuggled in bed--even watching "their" movie as Dave and I settle in to watching a favorite show, the only one we watch really, home, safe, warm. . .

Thursday, March 31, 2005 10:46 PM CST

.......................................
I even had the presence of mind to snap photos of
Olivia making pancakes and David constructing his
weather vane.

Chicks in the sun, Kacie here visiting--always a
dear--blessings from our Father above.

Hearing both of my parents' voices--even my little
niece's--Hi Auntie Sheila. . .

David running at baseball practice coming in second
from last--please David not--last--oh, David just do your best, If you come in last--you come in last.

The last will be first.

Mom reminding me of how she felt when I ran the 440 yd (ok, now I'm dating myself). It never bothered me that I wasn't the best--I was one of the better on my team--that is why I GOT STUCK running it, but I was always just thankful for finishing without puking my guts.

Days grow seemingly similar, two weeks I've been in a funk and realized listening to Terri's news how it had been 14 days.

Every day I read on TPNsupport how a child is struggling; how a parent is grieving, and my heart grew numb, dry, but Terri's life reOPENED my heart and now I feel again. I am just a phone call away from a friend who held her son as he died. This is not stuff which is your run of the mill--how is it going sort of conversation.

Yet, we maintain and go on.

Soooo, Kacie--will we get to hold your kitties again? Olivia!

David is in full planning mode about visiting Papa Pete and Grandma Bert, wanting to hit the road early so he can have some horrible something which McDonalds makes for breakfast, something I'm sure will thicken his blood, but is sure to practice baseball and so desiring a keyboard so he can play for everyone.

Olivia asking if I'll go too. Although, my heart wants so badly to go, I know I've much to do, quiet things, planning for school next year and now, art--tending to the gardens and yard. After baseball is over the kids and I hope to go visiting in June for short week.

Oh David, Olivia, I so love you.

Wednesday, March 30, 2005 9:24 PM CST

Struggle.

While bathing the tears flowed harsh and real, why?

The first month of being home with Olivia washed over; it had been a while that I've grieved with such intensity--as it seems so selfish to when she is such the flower that she is.

Last night's meeting of the family really brought to mind a lot of the past I'd put away and it surprised me how much it tripped over my heart this day.

To the point just minutes before Ollie (6th grader from church I'm teaching flute) came over. How can I do anything more, Lord? But He assured me that she would be a blessing and that she was and then some.

On Wednesday nights I lead the Cubbies, preschoolers and Sparks, K-2 grade in--what I call worship--some say music...
and as I "ran" through the songs prior to the 50 million Sparks invaded the room--reflecting over what the words were, meant--overwhelmingly so--
**************************************************
I'll fight this fight
I'll run this race

I'll serve you Lord
in all I do...
Until I see your face.

I see the cross before me
and I'll keep on pressing on--

God is calling so I won't look back,
His Word is keeping on the track

To Jesus
TO JESUS!

~Jana Alayra~

***************************************************

So simply stated as for a child, but ministering to my soul--heart--body-- in its very imperfect state. . .

___________________________________________________

So Terri is still living. I have resolved to only speak to a certain number of people in regards to her.

I just can't believe what is happening.

****************************************************

My wallet was missing. IF you read any of my posts this is an ongoing crisis in my life, I believe it started back in college with my meal ticket, room key, yes, there could be a solution.

For a couple of days I've felt that nagging feeling and as we were about to walk out the door I gathered my CDs for kiddos, unzipping the pouch--there was my BEAUTIFUL wallet.

I went into a PRAISE THE LORD dance--which Ollie didn't even bat an eye--(I so love kindred spirits--no matter the age)--and Olivia didn't miss a beat with,

"Mama ALWAYS does that when she finds her wallet"

Olivia very intuned to her Mama--as is David, but he is less likely to voice--reminding me that my daughter short of 5 years is teaching me so much about life--mothering.

She didn't want to stay in one iota today--"I want to feel the breeze, Mama"

I do too, Olivia, but I'm just having a hard time--

will you show me how again?

Wednesday, March 30, 2005 3:34 AM CST

Olivia went to her first "tea party" with "older" girls.
I was so proud of how she maintained herself. I had forgotten that girls like to whisper; and that took Olivia by surprise. We don't do secrets, but we talked it through on the way home.

We held hands.

Met Daddy and David at Pizza King even though it was already almost 8PM; God knew.

As I sat in our little "cubby booth" a little boy stood outside the entrance of our booth. HE HAD A FEEDING TUBE!

My neighbor had told me of a family with a little boy younger than Olivia whose older sister was in HER son's class...this WAS the family.

After introducing, Dave talked with the Dad (as Mom was not there) and I hung out with my two kiddos and these two.

This is a B*I*G deal for us to see someone LOCALLY who has tasted the medical-life and this family has. WHO understands that the LOCAL hospital is very SCARY for families like ours!

What a total God thing for me personally. And for Olivia she showed her tubes and her ileostomy (that goes without saying if she's showin' off the tubes). I'm so glad that she has been "raised" with knowing she is NOT the ONLY child--PERSON with tubes, pouches and lines.

Thanks to Robin, dear sister, today you saved me from myself. Allowing me to just talk--safe and sound, and for your dear daughter who Olivia adores.

Sweet Lord, thank you for giving me a day like today to help get "things" in order. To you I give my life.

Tuesday, March 29, 2005 7:42 AM CST

And today the sun shines. . .

There have been many rainy days connected and today the sun is already shining, but alas, we'll be on the go for this day.

I'm having some mommy pains, not sure why and what but patience is worn thin and now in thinking of the rain, could it be that we ALL need TIME outside to release such wiggling needs?

Making plans for a "friends birthday party" for Olivia--WHAT AM I DOING? Its funny, in the beginning I was so tense about it, but after talking with Trisha last night (who is in the STATES and I cannot get up to see)she helped me keep it SIMPLE, just by changing the time; it'll be amazingly more easy. Games, art, cake and ice cream--WAAALA!

Not even thinking of the possiblity that she could be sick, didn't even occur to me around Easter--Easter came and went--and all was well. Am I living in denial--or just starting to enjoy this part of the ride? I tend to look over my shoulder, look into her eyes, and try to find any clue as to what is on the horizon--as I do NOT like surprises when it comes to Olivia--either of my children.

Must get an iron infusion in before next clinic.

David and Olivia received homemade MATCHING PJS yesterday! David was DELIGHTED as he thought for sure it was ALL going to be for Olivia--with a birthday pending. Must show pictures--thank you, Miss Denise for sharing your newfoundtalent!

Have I said how much I love the ART CLASS? At first I was adament about having something for MY children--(age wise) but I think it is one of the richest things we do in our homeschooling experience. (David's piano being tops for sure) There are seven families including us and some have 4 children some have one, Olivia the youngest and the oldest maybe 13, all super kind and sweet to the youngers and David has a couple of boy buddies and Olivia latches onto the older girls of which they all adore her and she them.

The younger children are given large paper to just draw, paint depending on what the olders are doing, but this week we finally began painting the nonobjective designs. The paper is HUGE and I reminded the youngers what symmetrical means--next thing I know David has a DESIGN drawn and ready to paint--which he did! Olivia painted as well the WHOLE picture plane (asymmetry was her gig) but the sweetness of it all is that people recognize and acknowledge all the children's uniqueness and talent.

David rose to the project. The boys will work a good 45 minutes then will go outside to "play" with the girls following--they have extensive game time--with older children keeping everyone in line with love and kindness. I kid you not. It is available out there!

It is the most rewarding teaching experience I've ever encountered and I've had a variety. Having moms to young children all in the same room, teaching not "art" but how to see--how to see--how to--see!

Thanks to my basic drawing and painting instructors--as they taught me more than how to draw and paint.

But more than anything--I give thanks to GOD--AWESOME CREATOR for allowing me the opportunity--to...do.

To Jesus.

Friday, March 25, 2005 11:25 AM CST

Where has March marched?

Thanks to Darla my house is no longer ruling over me. It was a great time, I think we did a great job of tag teaming with the kids.

Two nights and I hated to see her go; spring HAS to be around the corner--I'm really trying to maintain.

One thing that really pressed my heart was when talking about Matthew's wishes--talking about his funeral--Darla told me that he asked for ME to talk. I thought all this time it was she who had wanted me. It seemed to open a wound. But also made me smile deeply; Matthew did love me. Funny, boy.

Today our last day of spring vacation--not that we really announced it to be, but off to art class today; I can't wait to see my students. Today we start our nonobjective paintings. For any of my "former" students--I'm sure you remember such a project it is one I stole from my high school art teacher in which we learned about color, painting while not having to do too much technique.

On Terri S.

I like to think of her as a person, bringing the whole crisis into a personal perspective. Having listened to a news reporter say that there are children in the public school system like Terri who are being educated, one who was never given the opportunity to have MRI or rehabilitation--so it seems that taking her feeding tube out would go right along with the rest of her life.

Livid.

Then going down the what if road. . .
What if Olivia marries...has a stroke...etc.

Starving.

As my friend just said to me--what does this mean for the future?

Better dead than disabled?

Lord help us all.

I wish I could say what I need to here, but. . .please visit my brother's blog if you want to hear real commentary--and real news on this.

Sunday, March 20, 2005 10:03 PM CST

HOSANNA!

Yes!

TO GOD be the Glory great things He has done so love He the world that HE gave us His son!

Olivia insisted on sitting in the front row, but end up in the second row, the perfect place for my family to be as I could see them and they me--and only a few feet away. There instead of watching the drama unfold I watched their eager necks stretched to see and Dave's smile as his eyes reached mine.

It was meant for them to see and hear.

I look back over this past year and how much we've grown as a family--as individuals, but mostly as followers. It is only through God's grace, mercy and love that we have been able to enter into such a different place.

Before the "program" all the actors, musicians, singers all met and the two pro actors gave a short talk, but before there was a man who stood up to give an update on a member of the church who has cancer. Doctors had inserted a feeding tube. And to hear the gasps around the room--I felt a slap of that reality--

A feeding tube.

It is a strange place this world.

I'll have to admit for the few hours each night surrounded with musicians I could loose myself--and dream high dreams of playing in a band--talk music, reeds, flutes, music stores, clarinets, all of it--as any mother would if given that outside moment to be?

But tonight to see Olivia, tired, waning a bit--I could not wait for intermission so I could scoop her and run to the restroom--to be her Mommy--to put aside all those lofty thoughts and stare at David's profile as he listened--to see his eyes.

For there is only one thing I desire right now--and I'm so blessed to have the opportunity to do it.

David and Olivia, I love you little darlings--may you rest well tonight.

Saturday, March 19, 2005 8:22 AM CST

Raining--and Miss Kim and I have the day to shopping--birthday girl stuff, Easter--life--house.

A day to be with a friend.

Stepping back, yesterday was a great day. With Papa here we headed over to pick out two baby chicks. David's is Penny and Olivia's Flower. They are TINY as in DO NOT OVER HANDLE THEM AT ALL.

David has a chart in the box to measure their growth.

The Easter production at our church is going so well. I look out and see a sea of faces I do not know. It never fails--God moving and tears flowing.

He has control over my fingers so thankful HE does!

Olivia is feeling back to herself--and is now in full fledged schooling making an ABC book. She is ready. For the letter C she drew a camel--with LOTS of colors. When I mentioned that C is for COLOR too, oh, she liked that.

Olivia is probably the most colorful person I know.

Thursday, March 17, 2005 7:06 AM CST

Tonight begins THE EASTER PROGRAM at church. It is simliar to last years, but not for me as I'm playing a whole new instrument and growing from the adventure.

After running through THE hardest piece for me last night I had to lean over and disclose to the oboe player who is a guest to our orchestra saying--that I REALLY am a flute player TRYING to master the reed and all these extra keys without chirping and squeaking she said, in a true oboeist fashion, well, next year you can play the oboe. Dave and I chuckled over that last night. NO WAY!

Its been fun to share my challenges of learning a new instrument with David. And with adding the clarinet into our family has been of sorts like adding a pet, funny.

Miss Olivia is coming out more and more in expressing herself and those with little girls will laugh (or VERY verbal boys)because there seems to be no END to the tiniest phrase to the LONG drawn OUT eventful story--fiction (we are learning what THAT means) or nonfiction--doesn't matter Olivia has much to say on either. And I'll catch David seeking eye contact so we can say with our faces--"how cute". David has been very verbal about Olivia's inner and outer beauty as of late. She has taken my breath away when we are readying to go--and David too, will say how beautiful she is. Olivia too, will say David is handsome and as he walked through the door with SUPERDADDY-O (after being at WORK ALL DAY, coming home getting O's backpack, helping with Cubbies, taking kids to SUBWAY to get dinner...and a MUCH needed hair cut for Davidboy) and a new cut--although I hated to see his thick beautiful hair sheered; it'll serve him well for the next month or so.

Olivia's flare has seemed to pass as a hiccup in the week, gulping down ham and bacon from her SUBWAY sandwich last night--raving over the fact there was graham crackers, marshmallows, M&Ms and ICING at Cubbies--I think she may have bounced back and we can possibly sigh a deepness and go on.

Last night as we TOOK the time to SIT and EAT together even though SO late, NO TPN prepared, etc. We sat holding hands praying as we do--and I felt the moment--I love feeling the moment when nothing else matters--but the stream of love flowing from hand to hand.

Renew me, O Lord.

Tuesday, March 15, 2005 9:27 PM CST

Dave and I both believe Olivia has experienced a "mini" flare over the past days. Having to vent her tubes, is a sure sign, and the writhing in pain during the night too, but Dave kind soul got up with her and syringed--pulled G and J juice out of her and she fell back to sleep in her Daddy's arms.

But today with the clarity of coffee to help with the morning--we started off with piano lessons of which David did so well considering he was home for only two days to practice this week and then home again to check on the plumber.

It was one of those days I was five steps behind--the house at least twenty but knowing next week it'll be easier somehow.

Home--we ate quickly remembering that we had to pick up SOMETHING for reading circle, Olivia's "last ever in her life" as David put it so dramatically. I had wanted to put thought to it all week, the kind of thought one has when they have all the time in the world, but raced into Dollar store and picked up packages of plastic insects--beats candy that one little girl I know can't or won't eat. David counted them out on the way and we weren't even late although I felt we were sure to be.

The neatest thing about today was, not only was it Olivia's last reading circle, but as we drove frantically yet carefully down the hill I realized that Miss Olivia has been sounding different now for a few days and it DAWNED on me--she is NOW saying GIRRRRRRRRL instead of GILL. THE R has arrived.

How does such things just happen.

There in her green patterned dress and striped tights which maybe pick up one color from her dress and those ruby-sparklie slippers everyone wants to tag "Dorothy's", but Olivia assures them it is the RED she loves--Olivia flitted--a friend snapping her picture as I forgot the camera--

Miss A and Miss B sure to have Olivia safely tucked between them as if they bookends and she the precious book, all making bunnies out of cupcakes and Olivia almost eating all of hers--no tummy ache afterwards, but only dried icing which I proudly allow to remain on her face as a badge of honor.

To God be the Glory--

Prayers for Angie's recovery, Hope's Natalie, Miss Hannah, Kyle of Columbus, and many more of our dear friends, and to the mothers whose hearts are shattered--

God save the people.

Monday, March 14, 2005 8:39 PM CST

Olivia had a "good" day, but still is requiring to be vented via her G and J--the bags trailing behind her.

She found the Degas coloring book--I can't believe how she wants to COLOR EVERYTHING--my art professors would be HORRIFIED, but she does plenty of FREE art too--it is just so wild!

So, off to dance--in pure ballerina form--a picture to follow--but Daddy said she had a tummy ache.

Wish she'd feel her 100% again.

Olivia, I love you.

David--I love you.

Monday, March 14, 2005 0:11 AM CST

With various obstacles mounting we opted to pull out--I took Olivia to my Dad's to catch up on laundry. A plumber called and after a look see it it was apparent he was going to need another day--digging into my gardens to figure where, why, what--therefore no washing machine and after a week of going through a lot of "clothes" with accidents leading my thinking to UTI; it was time to go to Papa's--besides I could do LAUNDRY and pick up my boy and see my Dad.

David asking me, "what is today" as anyone who is on "vacation" looses track of time--David always KNOWS what day it is--once realizing it was Sunday--I felt a flash of guilt for not having them in church, but knowing that we so needed to be where we were--for obvious and many reasons.

But Olivia decided (or at least her gut) that enough is enough of the good times; and after gorging in her nibbling fashion which is so dainty yet clearly pleasurable for her she spent at least a full day of gagging, running to the toilet vomiting, venting her tube and having "G-bag" following her, and David asking, "what's wrong with Olivia?"

Maybe she is allergic to cats? She seems to have her nose in either Blue's or Midnight's fur the entire time, but who knows.

Dark circles come and go--thinking she would fade but tonight she looked good as new, again.

Pseudo Obstruction! How completely confusing!

Friday, March 11, 2005 7:05 AM CST

Clinic days are long, but they are so full of precious pieces we call family life.

We headed out a bit later than usual because David was practicing piano--I know know what it feels like when you are IN the "zone" of music and having to stop; I think he has mastered one of his new songs. The boy is doing so well.

And off--with coffee in tow, something I've not done in a long while, but also making plans for something exciting in June.

Dave gave the OKAY for the kids and I to attend the OLEY conference! AND PAPA SAID YES in going with us! It'll be in Albany, New York and there will be folks there (praying so:) that we've known now for 3 years and have YET to meet! We are very excited. SO David and I were figuring out how much gas, how much gas would cost, etc. WHEW!

And dropping David off at Papa's Olivia and I zoomed into Cincy through the side door of I-74, one of my other favorite entrances.

18.5kg and 42 INCHES.

G-tube got some silver nitrate and Dr. K. said that he heard more sounds this time than ever--and--was amazed with that fact and with her FLAT tummy! We are almost getting used to it now.

Such a blessing Olivia's team is. We really really love them and pray for their safety and wisdom.

We discussed briefly lowering TPN, but really think she still needs it--she is SO active.

In the next month we'll go back up for iron infusion. Hoping to get it during a time when we have friends there as well.

Having said all that--

Dave and I are both a bit speechless when it comes to the miracle we are experiencing with Olivia.

As I was reminded yesterday--Olivia had at her Manomentry Testing (bowel motitily) almost 3 years ago that she NONE. NOTHING. NOTHING!

And to look at her now--as Dr. K. puts it, PICTURE OF HEALTH.

Our goal more than anything is for people to know and be educated about motility disorders, but to see Olivia as,

OLIVIA BLINN.

Praising God on the mountain.

Thursday, March 10, 2005 8:04 AM CST

TO CLINIC to clinic to weigh my daughter--

HOME AGAIN HOME AGAIN praying JIGITY JIG!

Blessings for this DAY!

Wednesday, March 9, 2005 9:17 AM CST

Whether it rains
or
whether it pours

I'll trust you Lord
wherever I go

In the light of day
or
in the dark of night.

I'll trust you Lord
will all my life.
Jana Alayra~

It is raining here, the sky is clear but it feels like a downpour is stuck over our house, not just ours, but over many people we know and the song above I taught the Cubbies last week has really meant a lot in holding to Him.

Trust. Something that is taken for granted, or not taken to its fullest of potentials--it was brought to my attention last week that, yes, I believe, wholeheartedly that Jesus is the Son of God--that He was born on this earth and walked and talked and taught and healed and was crucified buried and rose again on the third day--and ascended into Heaven and sits at the right hand of God the Father. I believe it--I even believe that, . . . in the beginning God created the heavens and the earth, Adam was THE first man and Eve was made from him, and that their was a fruit which was forbidden and a serpent which enticed Eve. As well as Noah's flood was a real earth and life altering flood, Abraham, Isaac, Jacob, Moses, and on and on--the history so rich so real and I believe it happened.

But Trust. Why is it sometimes it seems so hard to TRUST on the things of life right here and now?

But as I reminded Dave this morning, although things may look and feel out of control--it is nothing in comparison to almost three years ago when our lives were altered, changed and for the better we do feel although many may not think, but God has given us a new sight, a new purpose a new life.

I loved what Anne said about her Sammy, that even when his care became so complex (and I mean complex) she never felt burdened. What a testamony of a Mother's love.

Tuesday, March 8, 2005 7:00 AM CST

I love Tuesdays.

It is the day in which I snuggle next to Olivia and listen to David's piano lesson. It is the day in which we go out to lunch, today we'll go to Tuckers and see Miss ELISE (Oh, how we miss our collegiate girl) and then to the library. Only 2 more sessions of Reading Circle for my Olivia. We'll have graduated out of it for next year. They both are interested in helping with Reading Circle, but one must be TEN! So, we'll keep on plugging along at the library and see maybe if we can do something for the RC through our music from time to time.

We've been given the opportunity to visit an assisted living home once a month to play, sing and if you are Olivia, d*a*n*c*e! The kids and I will go in a few weeks during the week but will start up or regular time on Sunday afternoons (once a month) and Miss KACIE will join us, so she and I can play our duets, flute and flute and hoping to work up a flute and clarinet. She'll be visiting this Friday to give me MUCH needed practice on the Easter Program music. I love playing clarinet, but am still thinking in terms of flute fingerings. 30 years to battle!

Last night at Olivia's dance class--Dave swung by to take David home. They both tried to see into the lesson room--we're not allowed to as it distracts the little ballerinas. David told me last night as he was carrying Olivia's new "HELLO KITTY" shoes back to her room for her, that when he peeked into the dance room he saw her these little shoes, and he said, that he said to himself "AWwwwwwwwwwww, those are Olivia's little shoes".

I've noticed a lot lately that he picks up on her "cuteness and humor" and Olivia is quick to stick up for David--and he--her.

Praying for a "NORMAL" day for Olivia. Awaiting results on LABS and excited about going to CINCY on Thursday! Can't wait to see the special people who care for my daughter and get some help with Gtube, and just talk face to face with folks who know it.

Time to start this glorious day, which is trying to act like winter.

To Jesus.

I will FIGHT this FIGHT and I WILL RUN THIS RACE--I will serve you Lord in ALL I do until I see YOUR face.
Jana Alayra

Sunday, March 6, 2005 8:20 PM CST

Praise Him for the GOOD and for the HARD places--for the valleys and the mountains--THANK you--YES, LORD, YES!

Friday was a great day, we got to see our art friends--I am enjoying this class so much; very talented young people and even MOMS! I'm so glad that I was encouraged to take a step of faith and try something outside the walls here.

That evening our church held a Preschool Drive-In. The kiddos came with "cars" which were handmade out of boxes; David and Olivia really got into this project and it reminded me how important it is for them to work on a large scale. I no longer will sigh over the oodles of boxes which accumulate--they are building blocks--canvas--for the children's creativity! It was a GREAT time.

Speaking of boxes, David has his eye on the newest--our hot water heater--bless Dave--for he is going to tackle that job next. There is ALWAYS something new...or is it old?

We were able to attend the Louisville Ballet on Saturday; a remarkable performance--and the first act had a pianist on stage--ALONE with the dancers! David was intend and CONTENT in watching. What a great field trip. I so enjoyed this better than any other ballet I've seen. Olivia on my lap trying as HARD as she could to be silent, but HAD to ask, "IS HE A BOY?" Or comment on the costumes, "ARE THEY WEARING THEIR UNDERWEAR?" but at the end it was worth it all when I remarked to David how he was so quiet and he said, "Because I really liked it, Mama!" YES! We are due for an orchestra concert!

Then off to a CANCER FREE PARTY! Miss G is FREE! GLORY TO GOD! What a blessing to see many dear friends and co-workers of Dave--to speak to the mother of the CANCER FREE daughter--to see HOW GOD has CHANGED her heart--her LIFE!

And to see David and Olivia in a new element--a new surrounding and keeping their poise, Olivia walking down the stairs in her ballet dress (which Miss Darla gave her) and her big pink bow--the little girl I always wanted--with her light shining so brightly--Yes, LORD, YES!

But we wonder if Olivia's UTI is really gone--she has been experiencing some mucus drainage which can be normal for ostomy folks. It has been a bit of a learning process for her--embarrassed. Her urine output has been dark, but good amount.

Glad this week is CLINIC! Need to address her G-tube again which looks like granulation (PRAY SO) and her mucus, checking out her labs as I'll draw her blood labs tomorrow and with that drop off a urine sample too. She looks good, good energy, but sometimes she looks a bit grey to me. Maybe that is just her color.

So far we've gotten through the first week (almost) of March--the last 2 years Olivia has had an UTI and in-house for both--

FULL week ahead--learning, growing, working. . .

Saturday, March 5, 2005 9:50 PM CST

OLIVIA working her DETAILED CAR!

Olivia is ALWAYS drawing--coloring in ANY BOOK withOUT color!

Thursday, March 3, 2005 8:49 AM CST

A shift in life awoke me earlier than usual and as I did my morning email I found a dear friend online--

in which we both opened an email pertaining to one most special boy, through the words of his mother we all had fallen in love--it was so apparent that his whole family and all those anywhere near or far would want to embrace him and now although his life was a short one--I sometimes think that some of the shortest of lives speak to us in greater volumes than a long term on this earth.

As I checked in on Olivia who was already chatting to herself with her stuffed friends around her--I could not help but to take her in my arms, smell her TPNbreath, look into her eyes and count her teeth, kiss her leg and count her toes as if she had just been given to me--but alas, she had, for this day--to not waste or wish away.

Scrambled eggs for David while he began his handwriting lesson for today--kissing his neck and then the tears--

One thing I took away from the Compassionate Friend meeting I attended with Darla was that it is just plain un-natural for a parent--to loose a child--no matter the age.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Olivia loves her dance class.

David did so well at piano lessons and last night earned his last red jewel by reciting Psalm 23:1-6. We've been talking a lot about what it means--want it deeply set in his heart that he may never be alone.

Today we'll be home, learning, cleaning, cooking, baking, writing bills, folding laundry, and making cars out of boxes for a much anticipated "drive-in" event for preschoolers at church this Friday.

Don't let Winter pass you without hearing George Winston's December.

But may Spring soon be here and with it the reminder of Life Eternal.

Thursday, March 3, 2005 8:49 AM CST

Saturday, February 26, 2005 5:15 PM CST

Funny how locked "up" one can be--after having pretty long talks with a couple of moms this week which helped to OPEN UP the heart gates once again--Olivia and I had a marvelous day.

But before I committ our girl day into writing I must note that Daddy took David and one of his church--basketball buddies to see the IMAX Spacecenter movie. And Dave, in DAVE FASHION claims he is going to sign up to be an astronaut. Gotta love him.

So, after working OUT (YES!) I raced home to shower and brush Olivia's hair; she was steppin' out for our girlie girl day with her denim dress with red tights and of course--her sparkley RED SHOES! We decided to eat first, her choice--"A Nice Restaurant"--fine pancakes, but I had a veggie omelet. She ate 1/4 of a pancake and I didn't eat the rest!

Off to PAYLESS--and YES! They DID have her TAP shoes and can order her BALLET slippers from their online store--she was so delighted; purely innocent gratitude!

We decided we would pull out ALL the stops and head over to Louisville to spend Papa's gift card for Mama and another for TOYS R US that Olivia has had since Christmas--

We examined the department store--trying clothes--girlie girl day.

"We saw Miss Donna, Miss DONNA!"

WE LOVE YOU, MISS DONNA!

:)

Saturday, February 26, 2005 6:52 AM CST

There are NO secrets with Olivia, none.

"David whispered to me, are you going to show him your tubes?"

David had a friend over yesterday and as I was doing a dressing change and hook-up last night Olivia told me that she really didn't want to show her tubes--all with a big IMPISH grin on her face--which means she wanted really to enlighten our guest.

She walks the line.

She also said her stoma told David to do something, can't remember what--oh dear! A TALKING STOMA!

But David and I both have a nagging weird cough one which made him vomit up BLUE noodles since he had THE cupcakes Daddy brought home with BLUE icing. We had a good giggle over it and then he fell asleep to my telling my vomit stories. Oh David!

I can see the sunshine again; the light is abounding.

This morning I'm checking out a fitness center just minutes away. I hope to workout in the AM before Dave leaves for work enabling me to BE healthy.

HOPE AND NATALIE ARE HOME!

I call heaven and earth to record this day against you, that I have set before you life and death, blessing and cursing: therefore choose life, that both thou and thy seed may live:

That thou mayest love the Lord they God, and that thou mayest obey his voice, and that thou mayest cleave unto him: for he is thy life. . .

Deuteronomy 30: 19-20

Thursday, February 24, 2005 8:50 AM CST

SNOW!

Winter is still hanging tightly to Southern Indiana. As we left AWANA last night it had just begun; the children were so excited to see snow; how they love its promise of possibilities.

Olivia is feeling MUCH better--she was in true form last night and enjoyed being with a NEW friend; whereas David thinks he has none, but when I remind him then he is a bit comforted. But Olivia is quick to say David is still her first best friend.

And they have decided that they would not live far away from one another, that David would live next to Olivia.

My heart just goes out to my boy. He is so much like all the men IN his life; a different kind of male. Gentle, caring, wanting to follow the rules--I just keep telling him, EVEN IF THE STARS FALL--always do what is RIGHT. I peek into his room in AWANA--all the boys are out of control, the girls in a group, and then there is David. Olivia is a leader by nature, David more of a follower, so this is a GOOD thing as he is not running with the pack.

I'm amazed as to how kids talk to adults in general. But I'll not get on that soapbox here.

He said something the other day--while we were outside riding bikes the NURSE from PEDS had called and left a message. I listened and so had he--and afterwards, he asked is that good news? Is that what we want? I know he has a big plate full and sometimes full of concern!

As I type, Olivia is awaiting her TPNpump to beep, David is working on RINO in the MUD--a new song--he so loves the piano.

........................................

Tuesday, February 22, 2005 7:39 AM CST

Yesterday morning and afternoon was a bit of a fiasco in regards to Olivia's UTI and urine supposedly having been taken to lab for culture.

Thankfully Olivia is doing well, and with this mistake we now have a plan--as to WHAT I can do and expect from the PED office. So in the end, once again, something good has come from something seemingly bad.

Olivia continues to look good, and was elated by dance class yesterday--it is truly a GOOD thing for her. She will be a good little dancer too; her legs are so strong right now and with her bulk she looks so good (and darling). She takes it all so seriously and appreciates it all. She and I are due to go shoe shopping--shopping in general--watch out DADDY!

David and I took the time to toss the baseball and got to give him baseball 101 while Olivia was tapping and ballerinaing.

It is such an interesting life--and it is detrimental when I slip and get my eyes off of the One who loves and cares for me most!

Spring IS going to come again--the geese flying overhead remind me.

We are not victims but called in a different race--journey--place!

Blessed be the Name of the Lord.

Monday, February 21, 2005 7:23 AM CST

David has a song in his piano book called Rollercoaster. How last week was such a ride, in many aspects.

Very concerned for Hope's Natalie; Hope too. I can't seem to shake what they are enduring and wonder all "THE" questions. The connection of Natalie being a little girl just wanting to play and learn can really tear at my heart. I wish I could help in some way.

So, I feel like I'm living in two worlds; trying to keep on keeping on, but knowing and concerning over people (some) I've never met.

I've had to let go of some of my expectations, like having the kids participate in the Easter program--and realize that there are other ways--more practical and natural for the kids to minister to people with their talents.

Olivia bounced back and has been so happy since receiving the shots and her evening medball of Rocephin. Her energy level good, still a bit refluxie along with a cough, but she looks so much better.

I can always tell when I'm done--not empty but just need to take some time out. This weekend was just that, and in turn I didn't play in orchestra and with tears streaming--coming to terms once again with this world and how it works--for now--thinking of Hope, Natalie, Dylan's family, and so many others. . .

Yesterday was Recreation Sunday at our church. We are members of a church which has soccer, basketball and baseball leagues and other recreational opportunities. This year (maybe they did it last year but we didn't know about it?) they had an awards program. Following a light lunch a young man who played for U of L football spoke--it was inspirational, funny and moving. Something I needed.

But prior to all this while folks were lining up for their hotdog I finally made a connection with a woman who months ago said she'd love to have lunch with me. Why me? It was as if God sent her specifically to me yesterday (HE DID:) and she spoke words which were clearly uplifting to me. I've realized that I have not been as open to people locally as I am to maybe my TPNsupport friends because they understand what we do daily, what it is like to have an alternative eater, medically fragile, but 100% child girl, daughter sister--Olivia living with us. But this dear woman having a special daughter of her own, and talking of feeling alone, in need of a sister in Christ to share her thoughts feelings and...I bore my most inner feelings standing there on the gym floor with children flurring past and she to me--amazing.

It was so tender--she didn't feel sorry for me; she embraced me.

Amazing Grace.

Saturday, February 19, 2005 3:15 PM CST

Olivia's two shots have proven to give her the antibiotics she needed. She assured us that her legs no longer hurt but still wasn't into playing her last basketball game.

Dave and Papa Virg took the kids down to David's. I felt like I needed to check out for a bit.

So, Olivia is a brand new girl today--in her happy--gonna let the world know it mode--too much for me today and I hate that, but tomorrow is another day--and I know I'll feel better then.

Friday, February 18, 2005 6:11 PM CST

UTI. A shot in each thigh tomorrow we'll have the med ball.

Olivia doesn't look good, but painted up a storm during art class today--then played freeze tag outside with her brother and two friends.

Heavy hearts here as we hate when our girl is not well.

She picked out a Roo for herself and Piglet for Davidboy from the treasure box.

Thankful for my Dad--as he took David to the flood wall--I wonder, David and Papa--together usually means--Olivia and Mama somewhere doing medical stuff. Now Papa is napping on O's floor as D and O are watching Jungle Book--all hooked up--new dressing--the works tonight for my girl.

And tomorrow is Olivia's last basketball game--looks like she may miss it--her legs are so so so so tender.

Wish I could draw the drapes--if I only had some!

Thursday, February 17, 2005 8:42 AM CST

In David's SPARK handbook I'm to keep track for a week when he makes his bed, helps in the kitchen and explain what he has done which is kind for someone.

Every morning he and Olivia will wait out the end of her TPN infusion engaging in all sorts of play, reading, talking--

Our house is such that Dave and I KNOW where and what the kids are doing all the time. Our monitors are a way of living here. This morning as I was folding clothes I heard this.

Olivia, white is the smallest number of money. You can learn so much about things playing this game, you learn about money and try to get a monopoly. You want a lot of money.

Oh, David, I don't want to be rich in money, but in love.

But Olivia, you need money.

Oh, David, I don't want to be rich in money, I want to be rich in love, I want to be a good Mama.

But Olivia, I want a LOT of money, so I can DO things. I'm going to put the Titanic back together to save the ship.

We'll see how long this game is played. David's patience may wear thin as Olivia insists on buying all the pretty colored properties.

She is SO like me--David so like his Daddy.

Olivia is completely congested now, a little gray with the dark circles. She blows her nose then throws her tissue into the gigantic trash can next to her. Oh, look, Mama--at my tissue.

Oh, yes--it is precariously hanging to the edge...

as I left--David says, Olivia, do you remember that word?

What a kind teacher, brother and friend, you are my dearest son, my son who made me a mother.

With a full cup.

Wednesday, February 16, 2005 5:00 PM CST

After being alerted that the flu has reached our area and several children are out with it; Dave and I decided to hang close tonight.

With my head pounding and Olivia snuffy, David looking tired we took a break from AWANA.

David has been working on a world atlas poster which comes with flags of all the countries. Since he completed yesterday all his language arts for today he had more free time. He is working on Christopher Columbus as well and will start drawing the few pictures needed for his book.

What a treat for today--we had Miss Connie visit us then Trisha called FROM France. (THANK YOU!:) Olivia overheard my conversation about "moo" and asked several times today. So when she crawled into her nap bed and knowing she isn't 100e came together and there she fell asleep--closing my eyes I imagined her a baby again, the rhythm of her breath as she suckled--to when she began to twitch--my baby needed a nap too. What a glorious afternoon!

It was interesting to share my home with Connie today--someone who hasn't seen it in 2 years or so--and as we looked at the deck and now the closet--I was filled with so much thankfulness and pure love for Dave. He does so much for us everywhere. . .

Dave gets up at 5:30AM every morning. I've never see him waffle about whether or not to go to work--he will arrive at work between 7:30AM on and most nights not home until on or after 7PM. It is not unusual for him to come rolling in at 8PM. It was an adjustment for me as I grew up having my Dad home when I was home--having been a school teacher--Dave is in a different world--they call it corporate. But despite, he comes home and most nights prepares Olivia's TPN and draws her medicines into their syringes--we are a team--he picks up when I fall.

And boy, can I fall!

Tuesday, February 15, 2005 10:09 PM CST

There is yet another baby called up into Heaven tonight. We lift the family of Little Dylan to THE one who loves her most and created her.

Olivia had a bit of a slow morning--tummy hurting--seemingly tired--not her 100% self.

But both kids had a very productive table learning time, exploring ants, the letter K, David dictating his "book" on Christopher Columbus, his reading and writing--and FRACTIONS!

We joined Miss Kim and David Potts in watching the new Pooh movie; it was sweet.

But tonight--Olivia vomited several times, David fast on his feet to grab the pans, being my arms and hands of love--helping boy.

Praying it was just the orange she loved so much tonight--and nothing else.

May God's mercy continue. . . .

Monday, February 14, 2005 6:26 PM CST

What a monumental Valentine's Day this has been.

David received a sticker on a song he had only one week--a really fun song--great piano lesson over all.

But the BIG news is that Olivia attended a dance class tonight. She was so utterly excited and happy--and did well--so says the teacher--we were unable to see them, but canNOT wait until we do.

I remember fretting over whether or not I should put Angelina Ballerina on Olivia's wish list for Christmas; thinking she would never be able to experience it herself.

She sat so quietly with her hands folded--waiting.

Beaming when she came out showing me a few little steps, but informed me too much to tell as she learned so much.

Sometimes I just can't believe it.

Sunday, February 13, 2005 10:13 PM CST

Worth it.

Late night hook-up. Dave's been in the sick bed all weekend--and the kids and I have steering clear.

As I prepared TPN tonight--I was overwhelmed with the love, mercy and grace which abounds. Listening to a CD which my SarahSmith (SarahSMILE as my Mom calls her) sent me maybe for my last birthday--something I've not dug into; I seem to never dig into anything Sarah gives me right away--and when it is the right time--pow. Great worship time while TPNin'--and as I entered Olivia's room, she asleep on her throne and David groggily still hanging onto the last moments he could ever of this day--

with his half sleepy eyes watching his mother as she primed two lines at the same time--my heart began to speak and found myself...

It is worth it David, to sit with you at the piano and help you practice, to clean the basement, for you to keep your room in order, to correct you...it is all worth it. It is worth it to sing with you--help you read--and it is worth it to have extra things we have to do to keep Olivia. It isn't hard anymore.

It was a late hookup tonight--I in my work mode, holding the kids to their promise that the big room WOULD be back together to start our school week.

As I prepared the TPN I my heart swelled with thanksgiving that my daughter could be hooked up late--and that her lips are not dry, that hasn't needed extra fluids in weeks and that Friday was like a day away with Olivia--in a very special place with special friends old and new around us.

Tomorrow Olivia will live one of her greatest dreams. I guess it is a dream of all little girls, did I? She will go to a ballet class.

He gives and takes away; blessed be the name of the Lord.

***********************************************************

Saturday, February 12, 2005 9:01 PM CST

Daddy-O Hijacked Journal
I know, it�s been a long while since I�ve enetered. Have been meaning to do it especially since �The Big Ski Adventure� but there just hasn�t been time. And quite honestly, Sheila�s entries are so deep and insightful my entries pale.

The Slopes �
Skiing was a blast. We had suited up (or dressed out or whatever you call it) and get pulled away to a small secluded side of the bunny slope where She-Mommy would never find us. Had a great lesson, learned how to stand, how to stop, turn, etc. The kids listened for about five minutes (how to stand) missing every thing else but eager to get going. The teacher was excellent and I, standing there in 200 pound boots next to the kids in their skis made one realize just how helpless you are to move without the skis. But things were cool. Finished our lesson and it was time to rest inside. I carried Livvy in, thought I was gonna die.

Back out 2 hours later and we were skiing. Kids came out with Sheila and it was great. Livvy let me straddle her skis going up the rope tow and she got comfortable with me enveloping her while we moved. Next I straddled her skis with mine and me behind her and we went swooshing on down the hill (the first half any ways) It was great. After an hour or so, Livvy started with �Daddy, I can go by myself� Yea, Fat chance kiddo. The one time we went through the pipe and stepping back over a high spot, we got to the top of the rise. She leaned forward, WITHOUT me and swoosh, there she went. I was in hot pursuit. Now remember the �didn�t listen to the Stop Lesson� thing and she was heading right at an eight year old and the instructor. Following ten or so feet behind her, I started yelling, �SIT DOWN LIVVY, SIT DOWN!� Fortunately she did, the instructor looked up to all the commotion and stepped in front of the lad, just in time for a Livvy Ball of Snow to come sliding into their feet. Everyone was fine. Despite my absolute terror, both Livvy and David were fearless (and survived.) Skis are like big ice skates, except you can�t get up after you fall down. To hear Sheila tell about it, I was the King of the (Bunny) Hill.

Back to Now.
Am listening to the kids on the monitor. David says, �Livvy I think you won�t have pseudo-obstruction when you get older.� She responded that she would have it while she was little. I didn�t intrude. At this point in life, I don�t even know what to think of our life much less any thing beyond just focussing on the day to day, moment to moment living it. It�s just Life, whatever form it takes for any of us.

Gotta go put in night time catheter.

Friday, February 11, 2005 11:03 PM CST

Striped legs, Valentine turtle neck and pink tennie shoes and of course O's trademark, red corduroy jumper past her knees--and we sang all the way--she slept the whole way home and painted, drew and talked the whole 5 hours her iron infused.

Praise God.

18.4 KG--my girl is growin'!

Wednesday, February 9, 2005 8:31 AM CST

Today Miss Angie goes for consult with surgeon about her tumors on her brain. She has been an inspiration--relaxing on the Lord with all of her cares, not just HER medical crisis but for her son's care and the rest of her family.

Many of our TPN friends are not well, in and out of the hospital, awaiting their "call", struggling for their life on a minute to minute basis.

Olivia is still hooked up to her TPN and she is in bed singing her songs, marking off her calendar (just like her brother faithfully does) and polishing her toes. (Where is Aunt Becca when she NEEDS her?)

David at the table writing his "words" for 20A in his Raceway book. There are 36 steps and he is seeing the end near and is rising to the challenge. Of course he is singing "Silent Night" as he writes.

With the hens pen and bunny's cage already cleaned out this morning I see this day as a day full of good things.

Tomorrow I'll take David to Papa and then hoping for a stop over to see Miss Darla who is struggling with the open wounds of the meeting last week.

Then Friday another driving day to Cincinnati. My home town and my daughter's safe place

But last night--David was working on building something with his K'Nex (beyond me:)listening to Gould's piano of Bach. It was a great ending of my brother's birthday--I remember his telling me about how this man would play Bach and you could actually hear him humming as he played. Genius. We also read about Mozart and how he DID love the clarinet! And listened to a minor Serenade for 2 clarinets, 2 oboes, 2 horns and 2 bassoons! My boy has a LOVE for ALL music! Praise GOD!

So utterly thankful for my dearests who support and love us.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The heart of a child is the most precious of God's creation.
Never break it. At all costs, never break it.

~*~Joseph L. Whitten~*~

Tuesday, February 8, 2005 7:18 PM CST

A minor glitch for most of our TPNsupport friends--but it is a major gig for us this Friday. Olivia is asking what getting iron will be like--my prayer it will be easy with no complications and a nice visit to CCHMC. Because Olivia has never had iv iron there could be a reaction, but I know we'll have the best care.

God knows.

Piano lessons--David got two stickers (means he is OFF of them) and then off to the library. While I jabbered (too much) with other moms David searched the aisles of books and found several and even read a couple, his love for books is growing. I regret not spending more time with him today, and will make a point to be more available for him; tender boy. Going to look through his library books tonight.

Struggling to have more time at home and regain valuable family time it has been a wild ride lately.

I do feel as if I'm a little edgie, probably more due to the Friday deal--being separated from David as he'll be with my Dad.

Olivia walked around the basketball court 10 times tonight during David's basketball practice! She was so cute--with her fingers out counting each turn. David had a blast with his buddy Seth.

TPN is put away--Olivia making valentines for her Cubbiefriends and David and I are going to read--Daddy--fixing TPN--early night we all need.

But not without saying Happy Birthday to my one and only brother--Greg. My thoughts were with him all day and tears welled when thinking of all the birthdays we spent together as children and now that is not possible. He would ask for fried chicken for dinner--things were so simple then.

If you live close to your family; I pray you appreciate that.

Sunday, February 6, 2005 8:10 PM CST

WHEN did Olivia grow into herself?

"Oh I love taking money to give it UP to Jesus"

And today as we prayed before we ate she talked about how during Sunday School they would squeeze hands to let the next person know it was time to pray. I noticed her prayer tonight too had grown, it wasn't JUST--"and Chris in Iraq" but she asked for safety for him.

Having been around such compassionate people the other night--with their hearts rawly exposed limping through their story of loss--it made me stop and slow down the world. That night I watched one of my dad's "shows" with him; contemplating my niece to certain depths and then the intense guilt for having been away over the past few days helping on a project, oh--just want to be back to the basics, listening and having the squeezes and hear their thoughts and stories.

And with that deciding that trips to Papa's house, and more freedom to visit grandparents in St Louis is more important that signing David up for baseball.

I keep going back to a website which Sarah (thank you) sent me several years ago when we were both talking of homeschooling our children--it was of a family's schooling journey and the oldest boy basically learned from his grandfather on the farm. This young boy turned out to be a doctor.

Last night we had a fire on the deck--in Dave's birthday present--kids roasting marshmellow (does marshmellow have a W?) and enjoying the livelyness of fire. Olivia is NOW due for a hairwashing as she smells like a campfire.

All good. She missed her basketball game and didn't even know it. Want to get her rested for this week's trip to Cincinnati.

Tomorrow Dave and I will have been married 7 years. Olivia said something about it being special for us.

Yes, Olivia.

How I love my children--I pray they know that into the deepest parts.

But to love them isn't enough--how I love my husband!

Friday, February 4, 2005 4:54 PM CST

Home again HOME AGAIN Jiggity JIG.

It was a winterwonderland Thursday when we awoke here on the hill only for SPRING to try to thaw before we headed to Papa's.

There we walked back to his pond in 3 inches of SNOW! Looking for animal tracks with David far ahead of us all; he so loves it there as we all do, but it is something private to him I can see it.

Only 15 minutes away was the Compassionate Friends meeting and boy did I learn so much. I fell in love with each person there and in hearing their stories of loosing their child took an emotional toll. One gentle man who lost his ONLY child a daughter, 42 years old, reminded me too much of my own Dad and in hearing Darla share her Matthew was such an inspiration. So different as for 8 years Matthew was "sick" not just sick but very ill with lots of hardware, medications, hospitalizations, etc. Darla will be a great leader in such a group. Am hoping to go with her for a while as well as I felt such a sense of relief there, safe there, even in sharing Olivia's story and with many other children heavily weighing--it was such a special space there with such folks.

Off to art when we arrived home and found an email from Nurse G--sprinkled with talk of spring and the need of Olivia to have IV iron--will have to go to Cincinnati. Can take anywhere from 2-4 hours; this is her first. Was hoping that we could spend it home ALONE--as David was going to be with Papa spending the night next week. Oh dear. But am looking forward to the time. Any quiet time, hopeful healthful happy time with Olivia.

Am emotionally drained to be upfront and personal. Our TPNsupport friends are hurting, some so sick...

Just want to draw the drapes.

Thursday, February 3, 2005 8:03 AM CST

PAPA'S HOUSE!

Olivia is STILL sleeping! THAT is good news. She has been going going going and going without resting it seems. She is moving rather rapidly into that preschool little girlie thing to the LITTLE girl stage. My heart aches when I think how quickly they BOTH are growing. David with his mouth changing out teeth--talks differently, smiles differently, I stare at his mouth trying to remember what it looked like before--much like when his gums started to shoot out white--oh--life is so ever changing--so quickly to move from one place to another. May I know when to stop and watch.

Yesterday we met up at the church to help transform a room for preschool chapel. David and Olivia LOVED it as they got to spend time with their friends. S is just one day YOUNGER than David and both David and Olivia adore her.

I concern over such adoration especially when Olivia's Jtube popped out just standing there changing her pillow! I prayed that it would not freak, gross out, turn off any of the children and parents and we quickly just put it back in with more water. It was all right. And no one even batted an eye. What a blessing! They are seeing her for WHO she is...not what she has under her shirt. It has been my prayer all along--that folks could see the vibrant God created kiddo that she is.

How far we all have gone! O shed a few tears more out off guardedness--not pain or fear. And I just wanted to make EVERYONE comfortable--Olivia being first, David being my extra hands and then answering wonderful insightful questions afterwards.

So off to pack for an overnighter to Papa's. The main reason for our trip is the opportunity to go with Miss Darla to her FIRST compassionate friends support group meeting. It is being held 20 minutes down the road from Dad's and she and I can have dinner first--talk FACE TO FACE and attend the meeting. I'd have to say that I think Darla has done fairly well over the last 9 months considering that she herself has battled some health problems and now in 3 months it'll be a year since Matthew's departure of this earth. I know I've stuffed a lot of my feelings on this down deeply and am anxious about the meeting tonight--not ANY where like Miss Darla.

To ALL the mothers full of care--

And continued prayers for Natalie as she is now in PICU.

Wednesday, February 2, 2005 7:11 AM CST

Incredible days have hit us. Fantastic--Wonderful!

David picked out 8 books yesterday and is working on #5 as I type. He is starting to really not only get reading but the joy of it. Anxious for Olivia to read and I keep forgetting she is not even 5 yet but does know her sounds and much more, but just hasn't crossed over the line.

Monday we stayed home and Miss Kacie came by after her school so she and I could play duets. CLARINET and flute. I love the two instruments together. And if I want to hear it I'll play the clarinet to get the job done. We played some difficult pieces Greg and I used to and I muddled through, but also practiced the Easter program--I have my work cut out on a few sections, but God has brought me thus far!

Olivia continues to fight a cold, and after a binge of brownie bites with different colored icings which led to the most colorful pouch emptying in a long time, it seems she is on the up swing.

I guess I could say that Olivia has finally weaned. She has nursed probably once in the last week and that was because she was tired and I was lying next to her reading--our last nursing position. She and I have had an interesting career and although I at times miss it--it is more missing nursing a BABY not a preschooler. It was at times a power struggle and even during her almost 5 years there were months where she didn't have any.

I just know it is SO good for her and hoping we can find something useful for her that she'll drink. Nothing has stayed a favorite with her except water and "moo".

Natalie is being transfered to PICU. They have been riding the scariest rollercoaster as of late. Feeling helpless in Indiana.

Jeremy--Allison, Kody, Dylan...and the list goes on and on...

Friday, January 28, 2005 9:06 PM CST

But...

Yes, she does need TPN and all her stuff to survive, to live, to thrive and it does take money, doesn't it?

Dave just gave me the number. THE number. Where Olivia's statis stands with insurance.

Gulp.

I hardly see her central line anymore. It is there. It is the spoon which feeds her, and we cleanse, sterilize and respect it. But it is not something I can draw from the drawer. It has to have skilled hands to place or replace.

Tubes both the same yet in different places. From her belly they dangle. Does she think of them, doesn't seem so.

Pouches, caths, tapes, needles and dressings. Paste, clips, pins and caps. Bags of all sizes, pads or sticks. Saline and heparin all drawn and ready.

Sterile gloves, pumps and pole.

Tpn and lipids, fluids when needed. Flagyl, Nystatin, Furadentin, Zelnorm and a water chaser.

PUMPS! Lines and vitamins too.

2x2 slit "pillows" under her J. . .

Oh, Olivia you are worth it.

So worth it.

Just ask your brother, your mother and dad. Grandparents and cousins and aunties and uncles--friends and neighbors and those who know that you are a girl who needs to continue to grow.

Olivia Blinn we love you so.

And does He who made you.

Thursday, January 27, 2005 7:40 AM CST

A special day indeed. David's half birthday, also was Mozarts FULL birthday!

But on a serious note, my dear gift of friendship, Angie, one I met through the fine doctors at CCHMC because her son, Noah was created similiar to Olivia (they both have the same "equipment, but Noah is able to eat and receive Jfeeds to thrive.) has to have surgery.

After her face falling and the possiblity of having had a stroke, she was diagnosed as having tumors on the front part of her brain. She will be undergoing surgery Feb. 9th.

Amazingly though when she first told me of this I had nothing but peace and she too--clearly a God thing.

And realizing that the DeKolds are at such a sweet season floods over me--mercy--like sweet spring rain.

After leading the SPARKS in music last night I gave David a hug and squeeze; am so thankful I can still do that. I never want to forget that.

Today I am going to relish in the fact that we are home, a house which is in desperate need of care, children learning , working and playing...

Wednesday, January 26, 2005 2:44 PM CST

Louisville's orchestra played a mini concert at a local college. It is part of a series for school aged children and a dear friend is in charge of getting tickets for the HnH group and allows me to go in because of Olivia's "needs".

While waiting the kids and I got to meet various musicians as Olivia and I would walk up and ask what they played. French horn, violin, bassoon, and the CONDUCTOR! He was such a KIND man and knelt down to Olivia asking her name and then talking with David and Samuel. What FUN! During the concert he asked many questions about America--going over rivers, mountain ranges and the Atlantic and Pacific Oceans. This was a group of about 300 children or more. David raised his hand for a lot of the questions and finally was called--"ROCKY MOUNTAINS" YES! His buddy Samuel was so happy for him--and later S even got a chance to answer--two happy boys--who love music--and ENJOYED themselves.

The kids and I drove to yet another part of Indiana we've never seen to collect two FREE desks and were blessed to see six wild turkey! What joy! Had to call Papa as he delights in such things.

Then we sat down for a lunch out--just talking and I realizing that sometimes I get so concerned how people perceive the kids--are respectful enough--do we do this or that or should we or should we not; it was nice to be alone with them and enjoy them. And know that yes, they are polite and sometimes shyness (mostly David) can seem like disrespect, but really it is shyness.

Ah, but an hour before we are out the door again for orchestra practice and AWANA.

Have enjoyed our field tripping this week but will enjoy putting the HOME in homeschool.

Tuesday, January 25, 2005 4:14 PM CST

Prior to our skiing experience Dave summed it nicely--at his age he tended more to the familiar than the fresh or new. Dave is a natural skier having gone through the kids' lessons in the AM (we go separated from each other). He'll have to account that time frame as I am still consumed with my 1 hour lesson which I'll never forget.

The instructor had the thickest European accent; I usually am very good with deciphering but once we put the boots in the skis I seemed to be like a child who has all the materials sitting before them but still told to listen. I was too busy getting the feel of the boots to the stance, etc. I sailed all about to mini hills which of course were in the wrong direction. Another addition this instructor was probably in his late 60s up to my chin and after my first fall he said he'd help me UP if he COULD. He and I got pretty good at getting me back on my feet--he attributed it to my being athletic--and later he sat with Rachel and me for a bit--saying that it was a difficult place to ski as it is pretty much solid ice.

NICE.

I don't know the lingo but after GOING DOWN the little BEGINNER SLOPE which meant TWO dreadful LIFT rides--I saw OLIVIA--DADDY--OH JOY! We were joined again.

After lunch Dave took David out to the tow rope--kiddie slope--(nothing kiddie about it for me)--and Olivia and I made it there and I was COMPLETELY amazed at Dave's natural ability--and David's courage--and then Olivia tells me I can do it, Mama--I could not be on my skis and have her--not a pretty scene. David and Olivia were so GOOD--so excited--Daddy took Olivia down between his legs--and up the rope--so many times--David did his own thing; it was SO much fun. She got away once--but Dave said SIT DOWN OLIVIA and she did. D and O stopped like I did--on my BOTTOM--maybe next time we'll get to that--all of us. Dave got it down though.

Just an overall great day--meeting up with the family who encouraged us to go as well--good friends--great day.

I am SO utterly THANKFUL DAVE came with us. It was a great first time. SO SORE. But Dave MUST tell his version--I'm too tired to do it justice. And I know he'll have a different slant.

Sunday, January 23, 2005 7:59 PM CST

Weekends.

Both David and Olivia have the congestion cough syndrome; David admitted to having given his cold to Olivia.

But Saturday Olivia attended a birthday party at a FUN place--jumping, sliding, really wearing herself out; we feel very blessed and honored to have been included. Thank you, D and H! Afterwards Olivia made note that some of the little girls could slide down on their bellies and she could not. It was interesting as she said she could not be their friends because she could not do what they were doing. At this point she was so tired and I decided to save it for another day.

David played a FUN game of basketball and did so well running up and down the court! One of the other player's Mom kept saying how much fun David was having; so true. He is so happy and easy going over all.

But this morning Olivia looked dry, withered, stuffy so Daddy stayed home with both. 1 liter of fluids and she looked so much better. David was beside himseld because he missed church.

I so love playing the clarinet. The rented one has made a WORLD of difference and although I am not able to play scales like on the flute; I am thinking in terms of clarinet fingers more and no longer looking at the fingering chart! What joy it brings.

David and I had an afternoon lunch date today; and later Olivia and I changed her room around--put up her flower canopy from Grandpa and Grandma. I was impressed with her room overall. Fairly picked up and organized--Olivia puts away her work/toys before getting something else out. So she and I painted her table that Daddy made. She stayed in there the whole time working with me--being little legs to put things here or there.

Now David is determined to sleep with his sister; they both love the canopy.

Tomorrow will (hopefully) be another DeKold history moment--we are ALL skiing for the FIRST time. Kids are PUMPED; Dave and I are--well--hmmmm...dread?

Saturday, January 22, 2005 7:31 AM CST

Yet another moment in DeKold history.

Olivia had been talking about sleeping in her own bed after Grandma went home, last night she was determined to sleep in her yellow room even though it isn't "ready" for TPN and lipid bags, pumps, etc. She came into the "family bedroom" and said, I'll need my pole and picked it up and walked out with it.

It will mean a whole new routine at night--and looking forward to it. Last night Dave and I could hear a whisper, "DAVID" pause "DAVID" over and over well, next thing we knew David was in bed with her.

Before Olivia was diagnosed and since we practiced the family bed I saw the kids weaning off our bed into a bed together, but it was longer than expected as it came down to Olivia feeling comfortable to sleep in a separate room, and for Dave and me. Since Olivia hasn't vomited in her sleep (well, she did at Vernon Manor) and if she does we can hear it coming. We can hear her pump go off even without a monitor--a PLUS to having all the bedrooms close. It was strange night not having a child sleeping with me.

Today David has a basketball game and Olivia has been invited to a birthday party at a place which is full of fun. I've not been but Dave and David have for a boys morning out. It was so cute because the little girl is in Olivia's Cubbies and her Mom and I have exchanged emails and spoken--but Olivia and Miss Hanna are in different "groups" (Hanna and I are in the same group:)--and Olivia didn't really know who Hanna was, but she made a point of knowing--and now is talking about Hanna's beautiful blonde (straight--not like Cousin Carolyn's) hair.

She was so quick to pick up when I told her she had to get to bed early if she was going to Hanna's party.

Olivia is now the official over night cath supply girl. She even puts the water into the syringe. It is the little things like that which make it easier--David is in charge of getting TPN and lipids out and they both usually help in unpacking the supplies.

David of course is "woe is me" mode with sister going off without him. I think he is more dependent on her these days than she him.

We miss Grandma Lodgie, and yesterday we just took it easy recovering from the early drive to the airport and enjoying just being HOME. Next week we'll start a new month of school--hoping to start Monday with SKIING!

Thursday, January 20, 2005 4:16 PM CST

ZOOM.

Zip.

zap.

David is in a full blown cold or something. He is a walking stuffed nosed coughing miserable boy. Completely worked himself into fear and worry over the dentist.

"I can't WAIT to go to the dentist" Olivia chimed that one liner ONE too many times for David's tastes.

She was just having her teeth counted and looked over, but David was there for the cleaning.

I have to say this guy is so sensible. It seems David's adult teeth have good enamel so far but he'll more than likely need braces.

When I asked Olivia what he said to her, she smiled and said, "He said that my teeth are pretty".

Olivia's teeth have spaces--GAPS--CANYONS between each tooth but he assured me that will be a GOOD thing--plenty of room for her teeth! This is a good thing for Olivia; she's always concerned over her big gap in the front--like she's already lost a tooth.

And after stopping for a last supper with Grandma (Of course Olivia had to tell our hostess she had JUST been to the dentist)--David PUKED (no nice way to put it--) on the way home. Miss my boy.

Click.

Time to shut down the world and rest.

Wednesday, January 19, 2005 9:27 PM CST

Is it true that flowers bloom in mid winter?

There is a certain type which is unique, a real one of a kind--Olivia Blinn DeKold.

Her petals are multiple in color and her stem strong against the cold winds.

Her roots grounded in the soil of courage.

Can it be?

Tuesday, January 18, 2005 9:23 AM CST

HOME.

We are staying home today.

NoT going ANYWHERE.

Olivia already dressed for the day in her pink long sleeved nightgown, my patterned socks, and patterned leggings with her ruby slippers on her feet.

My creative daughter.

She asked from the bedroom last night as she was already hooked up, "Does green stain?" Green marker whiskers and feet. Oh brother.

Olivia had much green bile out of her Gtube this morning and her eating has slowed down a bit; thinking her body is slowing down a bit--so she does naturally. But she still is running everywhere--never does this girl walk unless she is sick.

But home--David with a major allergy flare, miserable, but didn't want to call it a SICK day as I described. He will plug along--we all will.

Papa today, Daddy home tonight, Grandma gone Friday!

Monday, January 17, 2005 3:50 PM CST

YES!

Clinic.

Nurse G. is such a gem; it something that is worth repeating. When she comes in for the preliminary questions she directs them all to Olivia now. I may interject if needed, but it is clearly a cool situation. They all lit up with we mentioned skiing and laughed a bit as well--forseeing Dave and I will be on our bottoms most of the time. The issue of her granulation turning black seemed to intrigue and worry Olivia but when she saw that it didn't turn her WHOLE belly black she was relieved as well.

Our stay at Vernon Manor was as always magical. Olivia twirling in the open spaces saying how much she loves Vernon Manor. The kids and I had room service while Grandma and Auntie Joyce and Rosella had dinner in the restaurant. The kids were so excited, so utterly sweet to one another and I thoroughly enjoyed the dinner and my little companions. They were nestled in one bed hugging throughout their meal--proclaiming their love for one another and God! (I KNOW that David was probably AS relieved as Olivia that all WAS well with her tubie and when Dr. K mentioned ZAPPING the skin with silver nitrate--David's eyes GREW 5 sizes.) We were given the top floor which looked west--over to University of Cincinnati. All night we looked at the McMicken building. Its great to share with the kids and the next morning we took a driving tour of the campus; it has changed so much since Greg and I attended.

Our field trip to the aquarium in Newport Kentucky afforded all of us learning time. David and Olivia were drawn to the tidal pool where they could touch and ask countless questions (OK, I was right in there) and they fed birds which Olivia got bit and really had her bummed out, but I put brown soap on it and she felt much better.

Was a great mini vacation and Grandma Lodgie really made it fun and happen. Its always a good time to travel with her.

Then a lesson in rock-n-roll 101 as we ate a diner--Johnny Rockets--David enjoyed the jute box.

Basketball games with Papa.

But with this being Grandma Lodgie's last few days with us we are quietly gearing up for the next season. Ready for her to go home so she can come back--afterall--IT WILL BE TIME FOR OLIVIA'S fifth birthday.

HOW DID THAT HAPPEN?

Thursday, January 13, 2005 10:46 PM CST

A New, Daddy-O Hijacked Journal Entry
Just looking and I haven�t journalled since November. As Sheila�s journal entries become better and better, I am less compelled to write. But tonight is different, I�ve had a couple of items on slow simmer for a while and w/ She and the kids out of town at clinic today, tonight is a good night for me to write.

Clinic:
Sounds like it went extremely well. G-tube stoma (hopefully the proper terminology) was simply granulation (the best of the possibilities) and they treated it with silver nitrate (or some kind of nitrate). No pain and Livvy is fascinated with the thought that the area will turn black.

Very good weight gain, they (Dr. K and Nurse Gerry) are pleased. �You�re doing great don�t change a thing.� If I may paraphase what I thought Sheila reported to me. The kids brought gifts for them both and they had something for both kids as well. Through the thick and thin of it all, these white-coated medical professionals have become our family. I truly feel that God brought wonderful and wonderfully talented people to care for us.

Sheila, The Tire, and St. Louis.
Have been sitting on this story for a couple of weeks. It is a short story about my wife.
We left St. Louis traveling in two vehicles a couple of Sundays ago. I had to stop for Starbucks and we all pulled into the lot after a whole 18 minutes on the road. Coming out I happened to glance at one of the van�s tires and it was showing steel threads. Oh Man, it would never make it 300 miles (less 18 minutes). I was frantic trying to get my StL support team to search out a reasonable tire store that was both close and open on Sunday. (Ken, my B-I-L is an ultimate Gear Head and this is good sport for him.) In ten minutes he had a store three minutes away. We drove there and no one was there waiting. Perfect. Through even the perfect rescue I am still absolutely frazzled and I am assuming the rest of my DeKolds of Indiana clan will be too. I negotiate the �I�m-not-really broken-down-and-stranded-here-in-a-foreign-city� tire price and as I am walking back up to the van, Sheila has the kids out in the parking lot throwing Frisbees and kicking soccer balls and they�re all laughing and running all around. Sigh�. I have always admired (and envied) my wife�s optimistic perspective on life. My great attraction to being coupled with She is that I feel like I am the mother ship who releases a satellite and gets a daily report from a magical, far away, world. Yet it�s my very own house.

My Kid Sister
Another of the special women in my life. My sister has graduated college with a degree after like 200 years of attending and at the age of......well let's just say it is pretty close to my own half century.
CONGRATULATIONS JANICE. A quick note: Jan is a foreman (forewoman?)who manages a crew that builds airplanes (fighters) for McDonnell Douglas (now Boeing) in St,L. She has a job I could not do myself and does it well. And now she has a degree. Impressive. You make me proud sweetie. Good work.

11:30, Time to get.
I promised myself I would only go 30 minutes tonight, am tired (always) but happy. I am sure it has nothing to do with my dinner (6 Krispy Kremes, milk and coffee). I feel like I am going to explode. (I can only imagine what Livvy feels like when she is flaring.)

I continue to pray for the miracle healing (who doesn�t) but would gladly accept a continuation of this season. For me it is extremely difficult to not have an idea of the probabilities, much less any control to affect the outcome. (Do any of us ever know or control?) I relate it the need in this life to trust God blindly for that is the only way to enjoy today�s good day. I think some of us just live with the awareness of the thin veils between good life, sickness (bad life), death. I have never had difficulty knowing there was God (even accepting the Jesus-is-Saviour part) - that is a head thing. But living it(i.e. trust) with such high stakes and finding the joy in good days, that is a heart thing, It can only be done with a huge leap (rather a free falling) into total trust. Life certainly is a funny thing, beautiful and terrifying at the same time.

The house is entirely too quiet without the rest of the gang here. (I don�t like it.)

Love to all our friends and family and Prayers for all our friends in need. May God watch over us all.

dave

Tuesday, January 11, 2005 5:51 PM CST

RUNNING!

Piano--lunch out--no BBQ sauce but ketchup and chicken for Olivia--and then on to my ULTRASOUND.

Had Olivia come with me as she has never really been with anyone for THEIR medical appointments and this was a great one for her. She and the Nurse got along famously and we ended up talking more about Olivia than me! Olivia told her all about HER and how she loves hospital beds and hates Jbuttons and Mama uses lubicration on her catheter every night--just amazing things were coming out of her mouth--after the nurse commented on such a pretty name Olivia said she was OLIVIA BLINN and her brother is DAVID PETER and he is SIX and a SPARK and she is a CUBBIE. We GO TO AWANA.

The nurse also mentioned how great Olivia looked--she truly is beaming these days--especially now after a shower and GOOD hair washin' and a trim. Pretty girl.

We then took our time and looked for ALL the GILLS on ALL the fish in the HUGE aquarium in the waiting room.

I love how ALL the pieces to our learning fit together--NATURALLY--A COOL GOD THING for sure.

So off we drove to a music store in Louisville where I tried out probably the most awesome flutes ever--kind of like shopping for a Mercedes or BMW--but only went in to rent a student clarinet--which PLAYS SO MUCH BETTER than my OLD (dad's and Greg's) clarinet! What a blessing!

David and I fighting over who gets to practice--he is anxious to get at it with his metronome.

Olivia even sat at the grand piano outside the music store and played a very nice tune. (Her own, of course)

Although I feel like organizationally speaking we are living on the EDGE of edges, but in the fullness of life--learning--experiencing--living--we are right where we are called to be.

Every good and perfect thing comes from God.

Monday, January 10, 2005 6:04 PM CST

Fresh--New--Clean.

A new week.

With a moderate temperature this morning of 42 degrees I mentioned a bike ride which means I'm held to it and with my new view on life of stressing less--resting more--eating less and moving more--it fit right in. But instead of riding around our "horseshoe drive" which is 1/4 mile around we warmed up with 1/2 mile then I suggested a REAL bike ride. Hadn't taken one in ages, being winter. But off we were with hills and curves David leading the way with his signals for taking off--3 bell rings, car coming 2 rings and one for reminding Olivia of single file! On the way back we started to work on momentum, strategy on making it UP and down hills and using the power to our advantage and not wanting to leave Olivia riding alone I was in full sprints at points. Glorious way to start not only a day, but a week. Have to clock the distance!

David is fascinated with Pearl Harbor and we are reading a very interesting book so we pulled out the DVD Greg made of Mom and Jerry's trip to Hawaii last year. Olivia had a lot of 4.5 year old questions.

Book school for David and we reviewed some passages from her AWANA study--John the Baptist (her favorite right now) and she began her Bible Book. I've enjoyed our Bible studies--a fairly new thing for us.

They are SO excited about the aquarium this Friday and made reservations at the Vernon Manor on the SEVENTH FLOOR--David had asked for the HIGHEST FlOOR!

Olivia took a nip of "moo" and a nap on the couch tonight--the bike ride really took it out of her, but she is back in full force.

BBQ sauce is her mode of eating--with chicken legs.

SO far so good, Thursday clinic!

**Trying to add cool photos by Grandma Lodgie--but they are TOO BIG:)**

Saturday, January 8, 2005 5:16 PM CST

It is strange to see January.

I remember distinctly a day in late December last year when I was in Olivia's room with both David and Olivia playing with the bristle blocks and spoke with Darla. She had updated me on Matthew after not having spoken with her in a while and then she told me her fears for Sarah. And now January feels different to me and each time I touch the bristle blocks I am taken back to that afternoon in Olivia's yellow room where moments passed so incredibly clearly.

But onto this January, my Mom (Blinn girl #3) is back from her whirlwind short week with Auntie Midgie (Blinn girl #2). They even saw Tia Vangie (Blinn girl #1) during this week all the way in New Mexico!

Auntie stayed on to see Olivia Blinn's basketball game.

Interesting game it was. Olivia popping around as usual but kept fingering her tubes and then a spot by her pouch (eeeeeek!) showed--and the coaches' wives caught it too and Dave and I finally at the right end of the court grabbed her--nothing! Maybe a tube which was open? Who knows...we were all fine with it, but I was reminded of how much Dave and I have grown--I running to the end of the court with a smile--(NO BLOOD--that is good--she's not crying--the tube isn't out--all good things--:)

And on our return to our bleacher seats Auntie with a full face of tears.

How I love the passion and care that is felt from our family and dearest of friends. (Just wanting a little girl to have a typical time of it) Nothing typical about Olivia's basketball playing! SMILING!

But I really do believe I've traded my tears for smiles on such an occasion--if it doesn't phase Olivia--then cool--

Let's run--

Jump into the light--

Dribble down the court--

Roll on the floor--

Stretch our muscles--

Tackle the brother--

Dance to the music--

Live!

Friday, January 7, 2005 4:39 PM CST

We'll advance clinic about a month heading up to Cincinnati next Thursday to have her Gtube checked out. Dentist rescheduled for the kids--David elated.

But a full day--I like them, but I didn't get to really "be" with my Dad as he came to pick up his zoo and we were heading out for art class. So good to see Papa after his wonderful travels and when the kids give hugs to see his love for them; they have a unique relationship with him. David helped carry out boxes and even carried one of the kitties in their carrier--what a sweet helping boy.

Olivia had her brother's heavy sweat pants on today with her multicolored turtleneck--so adorable when I would look at her sandwiched between to of the older girls at art class. And had David and Samuel on his sides and even though ALL three of them full of BOY energy--ALL three did SO well! So glad I decided to bring the YOUNGERS into the room. 1 point perspective was reintroduced as we barely touched on it last October; I was amazed at the level of talent in the room--and even mid youngers doing their thing--all willing to work and HARD! What a wonderful experience!

A good week of school!

Thursday, January 6, 2005 9:34 AM CST

Resolutions

Over the past months it finally dawned on me that we are at a different place on the roller coaster ride. Depending on what kind of ride you prefer it could be the anticipation of climbing the hill or the hair twirling and spit flying arm waving zooming the bottom. I tend to think what we are experiencing now is the straight track with the slight inclines where you smile and say, wow, that was fun--or wow, we made it.

As of late our biggest concern has been Olivia's Gtube stoma (hole into her stomach where her tube is) since it has taken on a new form, but after talking with Angie who has been at the place we are now in Noah's care--for some time--just passed it off so nonchalantely which released some of my anticipated fear. Her stool also smells like bile and IS dark green as if it is coming straight from her stomach--another concerning point and always being on the lookout for an UTI which can lurk about without notice then POW. But overall Olivia's biggest issues right now are more emotional.

It is JUST a phase; I know it. But she can be a little "spit" as coined by Miss Heidi. She has been at such a tender place and to have the sort of words which were spued out of her mouth last night I was really in shock. "Can't you understand English?" WHAT? When asked where that came from--she said "the trees whispered it to her"--oh boy. David and I both agree that Olivia is in a lying stage--trying her wings (or horns).

David on the other hand has finished his Empire State Building and announced yet again that he is going to be President of the United States and also wants to be the man who saves people. "You know mama, when there is a hurricane."

We'll have clinic next week to have her stoma checked out, labs drawn--checking her iron as well as her typical TPN labs. Was thinking this morning what a blessing it is to be with a doctor who calls her ileostomy an ileostomy and not colostomy and doesn't ask which tube is which and all that sort of thing. And a nurse who is compassionate at the right level.

Tuesday, January 4, 2005 7:28 PM CST

Come on Olivia, I'll do it.

I heard David coaxing Olivia this morning during my morning tea and checking email.

He pushed her pole with her two pumps while she carried her G or was it her urine bag--looked like J bag had been taken off prior. But the whole walk down the hall had nothing to do of what act was taking place; it was all about what they were going to do once in the "big room"--Olivia was to punch out the windows of the Empire State Building but it really ended up being little stuffed animals, dolls, etc. gathered around playing within and about the work in progress.

This is monumental. It is about taking life as it is and not majoring on the "stuff" but living through and around it.

Today was first day of school for 2005, in many ways I felt it a step closer to what we are becoming as a schoolingfamily. David's piano lesson was the beginning--although we listened to phonics songs the whole way there.

We ate out at what time I quized both of them over mental math, their life science and just plain enjoying each other.

Off to the library where we did language arts and math split up with building blocks and looking for books. David took his 15 minutes of free time to read a book on Pearl Harbour. Olivia had math lesson with coins while helping me at the copy machine. It was glorious.

We played a math game as well--David proud to be there playing a game.

But the topper of the day was not five minutes away from Miss Lynette's house for lessons did David's FRONT tooth (his 3rd--but FIRST top tooth) popped out! He's been SO concerned over it and was SO relieved to have it OUT.

Now to get used to his new smile.

Daddy came home in time to run David to basketball practice--nice ending to a good first day--good exercise as well as we didn't get to our music/moving time this AM.

Olivia got a full maintaince, shower and hair washing included--and EVEN got to watch LITTLE MERMAID. We usually only watch Disney stuff (fluff) when hospitalized--and she saw it; and I do believe it belongs to Miss KIM!:)

So thankful for a great day with my children.

A true gift.

Monday, January 3, 2005 5:09 PM CST

Our drive home was completely DeKold style--had to have a little mishap--AKA drama mixed into the journey.

Dave noticed the front left tire was so bare. But thankfully we found a tire shop and while it was changed out we had time to frisbee and play with the big purple ball--glad I hadn't taken them out--the weather here is unseasonally springlike. Makes my heart yearn for the flowers, dirt and longer days.

In waiting to find out when we'll go to Cincinnati but did talk with Nurse G (G is for MAJOR GEM!:) and she gave me some imput and we may wait until next week OR this Friday.

But Olivia is happy. She is in a funny mood at times walking in circles with her hands in her pockets almost chanting--how much she misses this or someone. I think not only David but she needs to be challenged--so glad tomorrow we'll step up our school year and start it off with David's piano lesson then to the library for school as we'll do on Tuesdays.

She and I had a day out--she chatters constantly sometimes with the most intense of questions and other times in her world swept with imagination which makes me giggle deeply within.

David is working on his Empire State Building model from his Aunt Janice and Uncle Ken; it has challenged him which HE needs. I read this weeks science to them both and I think by the end they'll have the concept down.

Olivia wanted to know today when she dies will she still have blood.

Godspell playing softly as the kids both were singing PREPARE YE THE WAY OF THE LORD. I love it.

Sunday, January 2, 2005 7:50 AM CST

A new year

Still at Dave's Mom's and Dad's house; it has been such a sweet visit with each night the kids opening presents from Grandma and Grandpa, Aunties and Uncles. Olivia really has taken to Uncle Ken (what a girl!). It was interesting to watch David and him put together the crane. Daddy arrived late Thursday feeling better and almost back to himself.

Yesterday Daddy took the kids next door to Ken's garage and I came over a bit later then David and Olivia and I walked home via walking to the bottom of the hill--as there rests a beautiful rock formation and a place special to me. I used to go there each visit, but stopped after Olivia's stuff, but what a victory! She DID the hike--discovering "nature" all the way and reminding David to not HIT nature with his walking stick. We saw a lot of neat things (could have really used Uncle BILL) and it was a great beginning for life science which we'll begin THIS week!

Just a great visit.

BUT -- isn't there always one?

Olivia's Gtube still looks "funny" and after posting to TPNfriends and her doctor looks like we'll need to get up to Cincinnati this week. I am praying for Thursday.

Olivia has skin around her tube which has grown UP the tube--it has bled slightly on and off--nothing hardly at all. But it could be granulation--something which can possibly be addressed with a cream, or it could mean that her stomach is prolapsed. Meaning the stomach is what we are seeing wrapped around her tube--which requires a minor surgery--not sure if we'd have to stay over night--etc. etc. etc. What to do with David, etc. etc. etc. I do know NOW that I want him to go with us--Olivia will need him and he'll need to know she is all right. They need one another.

Big time.

Grandma is being scooped by her sister Midge and niece tomorrow AM and then Mom and Midge are flying to NM to see their sister, Vangie--for a birthday dinner then flying back to Indiana the next morning. What JETSETTING girls!

Just hate to have any interruptions for Olivia; her whole world is going so well and she doesn't think there is anything "wrong" with her tube--she even put a "pillow" (2x2 which she wears on her Jtube ALL the time) on the G in hopes of making things better. Things are bound to come up--issues.

Just anxious to see her doctor and nurse this week; that will help us all.

Wednesday, December 29, 2004 6:58 AM CST

New pictures on photo page.

Christmas Eve

The children were called forward for Pastor to tell a story; he had brought his dog and of course received full attention--or should I say dog did!? David didn't want to go up but Olivia dragged him; Mary Lessie sat in front of them and when she turned to look at Olivia (something I didn't notice when I was taping but later when we viewed) Olivia gave her such a sweet tender look--which makes one say, AWWWwwwwwwwwwwwwwwwww.

Olivia is in love with her little friend, something even 6 months ago we would have never believed.

But on the our return we had sad news, but thankfully our friend is coping with eternal views--such a blessing.

Dave stayed home and now so thankful he did as Christmas Day and the the 26th he was SICK. We missed him GREATLY on Christmas; SO thankful that Grandma was here to pick up pieces and help out. David's K'Nex and Pulley were meant for Daddy help but he really figured them out nicely without TOO much help!

A new Christmas for so many of our friends, a Christmas without a loved one or a Christmas with knowing that it could be the last.

I can't help to do the same--knowing that life is so precious--even knowing while putting away Christmas decorations I found a box which I hadn't gotten out--hoping that next year we could all be home again. Not allowing the little things which can tend to bog down the bigger brighter picture.

School starts January 4th and the first 2 weeks are all planned! I canNOT wait; adding LIFE science (Lesson 1, IS IT ALIVE?) and history and geography for both. Geography and history end will be mostly review for David but hoping to have FUN with it as well. David loves geography. David wants to learn some physical skills so (and I SO NEED IT) we are going to put on 2 songs to start out and do exercises--skills, movements--two fold--practicing for AWANA music, and MOVING! YEA GOD, thank YOU for this idea. FOR ALL IDEAS!

Olivia has passed from icing girl to deli ham girl but her stool is watery and much of it! Maybe we need to switch back over to icing? She looks GREAT despite and is so full of giggles, smiles and desire to help and learn.

She's been enjoying her first phase of fashion dressing. Her skirt from Trisha and a scarf on her head and little pink sandals--of course with a smile.

Thursday, December 23, 2004 9:30 PM CST

Merry Christmas to ALL.

My writing this journal was first brought about by my dear friend and Olivia's doula (birthing assistant) Sarah Krauskopf who at the time was battling (she never said that phrase) cancer and January of this year went on to be with her Creator after giving each of her family goodbye hugs.

Sarah not only helped to bring Olivia into this world in a peaceful manner, but also was a soul sister in her love for family and I'll always be grateful for her encouraging my writing on caringbridge, mainly because it is my gift to David and Olivia. I hate for a day to go by with having some record of moments.

Rereading over many entries I am in awe of the TENDER mercies we've been experiencing now for some time in regards to Olivia's medical fragility. Looking over words written by a frightened mother, sometimes angry, or frustrated and weary the reminder of no guarantee comes to mind also that I never want to be so far from the hardest of days to forget what they feel like.

A meaningful passage for me found in Proverbs 30 puts it into perspective.

Remove far from me vanity and lies: give me neither poverty nor riches: feed me with food convenient for me:
Lest I be full, and deny thee, and say, Who is the Lord? or lest I be poor, and steal, and stake the name of my GOd in vain.

I never want to be so full or so poor.

The light is brighter these days; and I give that to the Lord on High. He has brought us through some pretty scary dark unknowing places which parts now are just plain routine. Olivia being sick is NEVER routine, although some of her symptoms may seem so, but never.

Praying for David and Olivia to not feel too full on Christmas.

Thursday, December 23, 2004 3:06 PM CST

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S*N*O*W!*!*!*!

We have plenty!

The roads were not touched this morning up on the hill so we decided against our plan for the Nutcracker. Dave needed the 4WD for getting to work.

David spent a good deal of time working on the snow and feeding this morning--Olivia was hooked up to fluids as she looked grey and dry to me. She was sure to tell me how much she felt left out, but we watched Emergency VET (Animal Planet) and "Its a Wonderful Life" and unhooked and OUT the door she went while I worked a bit more on the boardwalk.

"Its a Wonderful Life"--a good reality check. Tears and David was most silent throughout--will have to crack him open about it sometime when he is willing to disclose his feelings. Olivia just asked nonstop questions--I even took a short nap--this day really was what we needed.

Outside in the snow an overwhelming thought washed over me--maybe being teary from the movie--and just life in general, but the thought that less than 30 minutes ago Olivia had tubing attached to her central line which was threaded into a pump and infusing fluids into her. And here she was sliding down a 4 foot snow drift delighting in it. Pure delight. (Infusing--is a NEW word David learned to read this morning:)

Olivia looks good--even her fingers look chunky to me--her cheeks, legs and arms look fuller than David's even. Her smile brighter than ever and clearly in high alert anticipation mode for Christmas.

David snuggled deeply last night; yesterday's trek was a bit over the edge for ALL of us. David said it was the time we got stuck going UP the hill which scared him most. Olivia voted for the sliding DOWN as the scariest.

To be home...

Wednesday, December 22, 2004 4:35 PM CST

Felt like we experienced another Henryville tornado. Called Dave this AM to find that the roads were not so bad and I could not use that as an excuse. But Mom suggested the kids and her join me--so very thankful they did.

Going down Greenvalley Rd (hill) we SLID--then SLID some more to one side of the road to the other and almost head on into another car--not fun at all.

Blood drawn--yes.

When it was time to go UP the hill--we tried two roads to NO avail and called Daddy-O to the rescue. 4 wheel drive is a must that is for sure.

Pretty stressed over it--I find that my sense of adventure has been zapped--something in me snapped during the tornado drive home--and today again.

When we were packed into the truck--Olivia announced--my pouch is coming off!

So glad that was the period at the end of the sentence and not a comma--as the drive UP the hill with Dave was nearly perfect.

But the call is more snow for tonight--tomorrow--and (sigh) tomorrow is the NUTCRACKER--Grandma Lodgie's Christmas present.

We all SO want to go.

Tuesday, December 21, 2004 9:22 AM CST

Christmas IS coming and the goose is getting fat!

Olivia is in prime mode of JOY. She is out of her icing stage and into her Jell-O stage and with that we are seeing remarkable coloring coming out of her tubes and pouch.

Tomorrow (if we are not snowed in) I'll run Olivia's urine down for a check and yes, for those of you who have been nagging me--I'll be getting my blood drawn.

Praying that her urine is all right. She looks a bit dry today, drinking a lot of water, maybe to flush her system from all the sugar of the last few days.

David and Grandma are on a "date"--haircut, lunch and grocery shopping.

So nice to have Mom here.

Priceless.

Sunday, December 19, 2004 11:21 PM CST

**Happy Birthday to GRANDMA Bert!**

With Mom in the passenger seat and Olivia behind her, we three girls treked out this almost blizzard like Sunday to church; Daddy and David to follow.

Olivia was absolutely precious. She had her hands in clutched singing position except for the times they were to raise to Jesus. And--she sang the WHOLE song--never did she NOT sing--and loudly she did--and during the pauses she was sure to come in early--her little ML was standing next to her giving the cutest glances. Miss Kim and David Potts joined in our day and Grandma got tons of photos.

Dave and I had a DATE--shopping and a DINNER.

But David boy called his Grandma Bert and sang to her--oh yes and disclosed that he and Olivia have SEEN some of their presents.

It is so overwhelming to see WHERE Olivia IS now compared to last year--I understand children grow, but this girl has grown leaps and bounds from every aspect. As we were leaving I reminded her to sit on the potty to put G and J on if she sits during a game (Monopoly, of course). So, I bought her a Hello Kitty purse with little pockets in it so she can carry it to Sunday School with a syringe and "J-pillows". She will rise to the occasion for sure.

When Mom and I asked Olivia about her singing in church--

She said,
"Yes, I was scared, but I knew I had to do it." Not said in a mom made me do it sort of way, but kind of like, hey, I'm up there, I might as well sing--and sing she did--yes, she did! (I've said that already, haven't I?)

It dawned on me last night before her bath she was being SUPER silly--she always is smiling and is always very joyful--but SUPER SILLY (too much icing--her 3 day "mode" of eating?) and it hit me--wow, she is acting like a 4.5 year old. But into the shower she popped and washed her OWN hair--only to come out and lie still for all her special Livy maintenance which at this point is just down right special time--as she is so easy about it all.

David's day comes Wednesday as we'll have a home recital--taping it for sure. He and Grandma have little programs made up already.

Papa and Greg are having a WONDERFUL time--many special memories being made.

Thank you Lord for the abundance of your love.

Saturday, December 18, 2004 3:10 PM CST

From Greg's (my brother) blog--

The cat is out of the bag!

Talked with Papa Virg tonight, and he has discovered the surprise.

The Amtrak ticket agent at Cincinnati Union Terminal (CUT for those In The Know) asked, "Is someone else is traveling with you from Chicago?"

Papa was waiting for the Westbound Cardinal. He should be boarding about now (and I should be in bed). Sunday we take the California Zephyr together from Chicago to San Francisco.

He still doesn't know that he will be staying at The Drake Hotel which will provide some element of surprise. Much to my delight, I was upgraded to a "Junior Execute Suite." Nothing "Junior" about it. It is about three times the size of our condo in San Bruno, and is a corner suite overlooking Lake Michigan -- stunning (more than makes up for the fact that United has lost my luggage -- just clothes, nothing valuable).

Ate a sumptuous dinner at The Drake Bros. Premier steak and the service was impeccable. Dinner consisted of Pine Ridge Cabernet, Heirloom Tomato Salad (highly recommend), Petit Filet, Shiitake mushrooms sauteed in garlic, ginger and soy (ambrosia), a wonderful corn special side made by grilling corn on the cob and shaving the corn with fun spices. No room for dessert.

Met the restaurant manager (he was hooked when I started talking about Napa and Sonoma wine country which he is planning to visit for the first time this January) and he made a reservation for Papa and me overlooking Lake Michigan for tomorrow night (I enjoyed looking over Michigan Avenue during dinner tonight). The music was pure Greg -- Frank Sinatra, Ella Fitzgerald, and I was transported back to the 40's.

The Drake is very festive with Christmas decorations, moving nutcrackers and -- Trains!

Looking forward to exploring tomorrow after picking up Papa.

After all, I may just have to shop for new clothes in the Water Tower!

________________________________________________________

What a precious gift Greg has given Dad. I've been afraid to talk to my Dad in fear that I WOULD BLOW it, and when I KNEW that David would not see Papa again before his trip I told him as soon as possible. Hated keeping it from the kiddos, but on my--they would surely let it out, Olivia!

But it was I who on the very first night of Grandma Lodgie's visit here spilled that the kids and I were taking her to HER VERY FIRST NUTCRACKER.

Memories.

Olivia made to baskets today at basketball with the help of her coach. Such dear people.

Mom got to see first hand Olivia's dribbling--(?) of the ball. Precious.

I'm a bit under the weather, but puttering--and readying for the preschoolers debute in church tomorrow. Olivia's first time singing in church. MORE TEARS.

Thursday, December 16, 2004 7:55 PM CST

She is HERE.

Yesterday action packed from school in AM, to church in afternoon to practice for Christmas Eve, cupcakes for Cubbies, new pouch, Papa dropping off his zoo as he is OFF to California. Kids could barely contain themselves with the IDEA of NOT only Grandma coming but GOING to the AIRPORT AT NIGHT! Dave had TPN/lipids ready--so MEDBALL infused and then I started TPN/lipids in the van in the parking lot. BUT WE MISSED Grandma's entrance! But BOTH got to run and give her that FIRST hug...

AWANA night!
Through the WILD energy of all the childrenn last night and electrical glitches small little treasures somewhat subtle and caught as by accident were given. I kept my eye on David during SPARKS music--what a special kid.

But during Cubbies on my knees before them Olivia with her arm around her ML and kissing her straight on the cheek--something so innocent but yet, she'll need to be reminded to keep her hands to herself soon enough. She claims she loves ML.

But I think the sweet gift was when little Grace used her own money and bought both D and O a gift. That so blessed David--as I think he was a bit left out during the SPARKS festivities. Lots of girls in his group and they tend to clump.

He carried his new bouncey ball in his pocket to piano today stating that he "loved it"--and Silent Night and Away in the Manger played by his precious fingers--so blessed.

Blessings to dear Grandma Lodgie and her hands on love and care for David and Olivia. I don't know who talks more--Grandma or Olivia!? That is yet to be determined.

Full heart--fullness--

Thinking and praying for our dear special friends.

Wednesday, December 15, 2004 8:38 AM CST

Myriad of thoughts and feelings.

Today my mother arrives here. Olivia blurted several times yesterday that she canNOT wait for Grandma Lodgie, that she will NOT go to AWANA as she wants to go STRAIGHT to the airport. Each has their own relation with their grandmother. As it should be.

Winter is here and Olivia's homemade bird feeder twirling from the branch has the birds very interested. By Olivia's window is water and feeder for the birds. This has totally ingnited her knowledge for the featherd creatures. In the mornings when she is still "hooked-up" she can see life--we've stopped morning TV all together--and since then she has been sounding out words and writing letters and words, drawing EVEN more. And talking!? We watched a NEAT 1960s video on fish and their sounds; talk about QUESTIONS! She sure does love animals.

Her G-tube has granulation tissue--nothing to major--and have an email out to her nurse. Yesterday we had guests here and Olivia showed off her pumps, tubes, and surgery pics. She also stated, "I have a medball." We LOVE MEDBALL--so EASY! One time a day right before TPN. Hoping UTI is gone NOW.

BUT David--Oh, my. The things he is growing into is happening so fast. What a blessing to see these things. He is determined now to read the whole Kid Bible to Olivia--and practicing piano--working on his pouting face--and Daddy knows too how important it is to have physical Daddy time--after their little time--I heard David singing at the top of his lungs while putting away TPN with Daddy--"CHILDREN OBEY YOUR PARENTS"--He is working hard at the things I'm pointing out--like looking and speaking to adults--he is quite shy overall (I would have been HORRIFIED to do such a thing) and is making real strides. Working on the word immediately as well; and he IS working at it.

But--I'm so excited about his love for birds. He now has a beginners bird watcher book--which he puts the sticker by the information and has spaces to write where and when it was viewed. But the fun part is there is a space for remarks. And here he writes WHY he likes the bird.

Time for school.

Monday, December 13, 2004 9:55 AM CST

Was going to start school--then a quick call to Grandpa Jerry to sing HAPPY BIRTHDAY--and he reminds us of Cousin Alex's birthday--HAPPY BIRTHDAY to you BOTH!

And David scurrying to pick up all the potholder weaving, but Olivia is busy now with it--little fingers alternating--over and under, over and under--so we'll start in a few--spelling quiz, math--

Olivia went with me yesterday to a memorial for Matthew Lindenmayer and others who passed last year at the funeral home. Paul's words were read--rejoice in the Lord alway--not just rejoice--but IN THE LORD! Wonderful news.

Olivia told me yesterday she loves her central line--it never hurts or comes out (oh do I HOPE that is true!:).

She also said said she was in a new "mode" now--hummus--she herself remarked that she is always changing modes with foods she wants to eat. Scrambled eggs--melted cheese--hummus now--and I do think Jell-o is coming on too.

David is now reading books to his sister and this morning I heard him reading the David and Goliath story to Olivia as she was picking up and decorating her room! What JOY!

Now David is playing his Christmas songs for his Grandma Bert.

The Messiah is softly playing in the background.

For Jesus.

Saturday, December 11, 2004 2:57 PM CST

Looking back this week really was a typical pseudo obstruction kind of week--ups and downs--all arounds.

Olivia discovered her Jbag and thought it was full of blood a couple of days ago, but it was just the beginning of her body shutting down and shifting gears, no blood just a change, but good "EYE" on her part for sure.

So she has her once a day medball with is NO BIGGIE and although last night she said her tummy hurt off and on she did have a good sleep; Dave slept entangled with his daughter and in the morning told me that she looked distended. We opted to not wake her for basketball pictures and game. She took it in her usual Olivia stride, but Dave and I were a little saddened.

She is filled with all her typical smiles, talks and JOY that completes Olivia.

Dave stayed with the kids while I ran over to Louisville to drop off my flute to be FIXED--repairer said it is in BAD shape--no wonder I've had to work my tail off to get a good sound. I opted to rent a NICE flute while it is fixed since I'll not be playing clarinet until after Christmas. What a JOY it is to play such an instrument. WHOA! Then over toe WO to pick up a few health foods (why we don't have a decent one over here I'll NEVER know!:) and saw Miss Donna--one of my most favorite friends in this world--a Lover of Jesus and Tender of Spirit. Sisterhood at its best.

And on my return David and Olivia STILL in PJs playing a game of chess at the kitchen table--

I love that my husband (although he has fine taste and has had THE house beautiful)allows for us at this time to have house learning--everywhere--not to say we are not working on house cleaning and picking up as part of our daily routine--but thankful that maps, art, charts and be hung without concern of decor.

Tonight IS movie night which fills our home with a bit of excitement.

Family--home...with added anticipation of Grandma LODGIE--soon.

Friday, December 10, 2004 8:43 AM CST

Well Miss Missy has decided to play the pukey game--distended and overall not feeling her sure FIRE self. Although the UTI has reduced from first look talked Dr. N. into IV antibiotics. Not really talked her into anything, but she agreed at the looks of Olivia's belly. The cool part is her nurse asks ME what I want--a dip or a culture--love that I can call the shots; so needed. Another totally added blessing is that Dr. N. said her number is in the book and to feel free to call anytime. How is that for a down home touch?

But before all this we escaped to the library to check out movies for Movie NIGHT this Saturday. Tears. I had popped a quick email to a new dear friend and she and her Samuel (one of her three) came by and scooped David off to play for the rest of the day. She and I both talk about never having a sister and have decided to adopt her. She is officially mine. I am whipped, and not just from O's ups and downs this week, just overwhelmed--ready to see my Mom in the FLESH and have my time with her.

Now Olivia and I will cuddle for as long as we can. Fluids running.

*************************

Olivia has been acting fast paced but this morning she is grey again remarkedly distended and vomited. All signs that something is up and with her having a possible UTI still will run her urine down to PEDS and see if anything is up there--if so I'll ask for IV antibiotics pronto--no more fooling around with hopeful wishes.

Olivia cannot stop spelling words and writing--if she is not drawing or imagination play with her little animals then she is spelling, writing words. She has 2 journals going now--one for bedroom when she is hooked up and another for "school". And after 2 or is it 3 weeks of daily spelling quizes David is "hearing" each individual letter sound and doing so much better. He'll read to Olivia when asked but is rather shy about his reading. He is a good reader too. Piano is still very much a constant--first thing David does when he wakes up and last thing before bed with several practice sessions throughout the day. Olivia is starting to stop by and explore--I'm waiting to see when she is ready.

Just praying Olivia feels better, tomorrow is picture day for basketball; she has to be there at 8:30 AM! YIKES! EARLY HOOK UP TONIGHT!

Time to cath Olivia and get bundled for our trip to PED, hoping we can get her figured out.

Tuesday, December 7, 2004 7:36 AM CST

After receiving a call from PED we headed down to the office. Olivia was in pure 100reative wild child gear. I put on a X and O and heart turtleneck for her (as I have to pin up her C-line and two tubes) then let her have it. She put on some skort thing (pink) and a pair of my patterned dark blue socks which she wore up to her knees, with her tennie shoes but the kicker was her multicolored poncho and over that David's bomber jacket, oh yes, and her pink necklace which reaches her belly.

Switched to Bactrim for 10 days. Olivia is "ON" constantly and so full of things she must say so I'm surprised the Dr had a chance to even let us in on the plan. So thankful--she is happy and clearly feeling well.

Christmas tree was decorated and both David and Olivia have played for hours with the Playmobil Nativity. David practices constantly his piano and everytime we are driving SOMEWHERE (seems a lot lately) we sing the 12 Days of Christmas. They love taking parts.

Grandma Logi will be here the 15th--we are so in need of her help from ALL fronts.

Monday, December 6, 2004 9:10 AM CST

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Kody seems to have slowed on the spiral down and slowly upward is the direction.

***********************************************************

And yes, Olivia did make it to her little friend's birthday party and had a sweet time. She is still very independent of others.

Her UTI doesn't seem to have been a "BIGGIE" although we are still waiting on the sensitivities and what is growing in there--I'm willing to see if we can knock it out WITH the JTUBE medications. She has GOOD absorption right now and find that her energy is UP and her color back.

We walked the preschoolers down to a big room to practice for their singing December 19th. It was SO adorable--and I'm sure to find Olivia and experience her even though there are 40 some little bodies I'm trying to keep on the task of singing--OF course I have WONDERFUL great helpers--

Olivia is so cute--she sang in the "rests"--

I slept while Dave and the kids got THE most beautiful soft pine Christmas tree.

New week--school! Much to be accomplished.

Saturday, December 4, 2004 3:38 PM CST

The earth groans.

Olivia was lifted by her coach so she could make a basket. She continues to spend more time trying to get the ball under control than dribbling. It is Olivia. She has no fear.

David hustled and recovered the ball several times and even dribbled down the court--to the other team's basket. He is so brave.

But the groaning continues within the depths--whether it be Natalie--Kody--Jeremy--Sean--so long away from "home"--how birthdays are sometimes postponed, children hardly seeing their mothers, parents hearing the hardest words about their children--and the basis of it all--children get sick and are sick all their lives.

Olivia told me that her friends tell her they are sorry that she has tubes. I asked what do you say to this?

"I was born to have tubies."

Friday, December 3, 2004 12:31 AM CST

Please increase prayers for Kody.

Was blessed tonight to see the beginning of life. Kim asked me to go with her to her ultrasound. Flickering light--a heartbeat.

There was a mix up and O's antibiotics were not at our usual pharmacy. But O's PED was ON CALL! AND--WALGREENS is open 24 HOURS AND--they can do OLIVIA's FLAGYL! We've been paying OUT OF POCKET!

What a blessing.

Praying for Kody.

***********************************
With a tinge of grey and that look of "off" especially this morning after unhooking TPN--rings under her eyes; I knew something was up. Indeed. UTI.

Now my mind is in a tizzy as to what would cause it--we've not been cathing throughout the day and there have been a few days in which I have totally forgotten to remind her--and she does not "feel" she needs to void therefore--oh. Was just thinking how "LONG" it had been without any intervention like this. She had a dumping flare a few days ago as well. Usually after something like that she'll have an infection in her bladder--like everything is pressed up into and spilling the germs into the bladder.

Am a bit wary as PED recommended only Jtube antibiotics until the sensitivities come back. Last time Olivia had a UTI it put her whole gut into a spin which none of us want to repeat.

David had his first piano lesson yesterday; his teacher is WONDERFULLY professional and truly a gifted teacher. We feel honored to have her part of the teaching team. Had hoped to have a friend teach him, but she is full and I really felt he needed someone now as I could not keep up nor was I sure on the technique. Olivia and I stay in the "studio" and I take notes on what she is teaching him--and Olivia listens and learns as well!

Later, David and I worked on the train puzzle more then he left me to play with Olivia. Always a joy to hear their conversations. Olivia tends to narrate during play at which David corrects--reminds her he prefers her to NOT do that. But the neat part was Olivia could not keep her hands off the piano last night. I think the lesson sparked her--and she made up a song.

"Seahorse Town"

Overall this week has been difficult. Too many TPNfriends are fighting for their lives. Hard to concentrate at the tasks at hand. Kody, Jeremy, Natalie, Sean, Jordie, Allison-- and a local girl who was just diagnosed with cancer.

And tomorrow is a big day for Olivia. Her first basketball game then her first GIRL birthday party. So--I'm a wee bit concerned UTI will progress--do not want fever--do not want pain--

I'm trading my sorrows
I'm trading my pain
I'm trading my shame
I'm trading my worry

I'm laying them down for the Joy of the Lord.

Yes.

Tuesday, November 30, 2004 4:41 PM CST

Today the kids and I visited a family. Olivia and the little girl (David's age) played while David played with the older boy.

I asked Olivia later if she showed her friend her tubes? She said no, but told her that she had two tubes, ileostomy pouch and cline. She said that her Mom had told her but that was it.

Cool.

She was so excited to see the same doll house that is at Cincy Childrens' playroom.

"When I was sick..."

AH...

Monday, November 29, 2004 4:19 PM CST

Natalie is back in OR,

Sean has his big surgery today,

and Kody continues to struggle.

Jeremy is in the hospital baffling the doctors.

Others receiving hard news.

The "network" of families mean so much to us. It is a whole "other" family.

But we have a couple of friends who have received their GIFT(s) OF LIFE and are doing WONDERFULLY! We pray that transplantation continues to have such great outcomes.

Olivia's nagging cough ended her into a good 2 hour nap with replacement fluids. This morning's school was precious and productive.

David and I are addicted to the 600+ train puzzle given to us by Natalie's older brother Zachary.

Grandma Logi (Lodgie) is here December 15th and I have strict orders for laundry to be under control.

Sunday, November 28, 2004 1:07 PM CST

Our miracle continues.

Olivia eats small amounts--fried eggs are her choice now, but only the whites. She had 2, plus 1 white of scrambled egg and one piece of Amy's frozen cheese pizza. Could it be? Tomorrow may and will be a different day, but for this day I will rejoice in what has been given.

Still TPN dependent and really I don't allow my thinking anything other than that, but I did allow myself the thought of maybe only TPN every other night? Fluids would of course always be needed. Can one dream? Pray?

I think for the first time in this journey I'm allowing myself to pray for such things. Before it was always--for her life to continue. And many time my prayers fell silent; almost jealous of those who could still pray. I am so thankful for those who faithfully pray.

So many of our TPNfriends are so sick and without answers. How do I respond to God? Olivia reminded Dave and me of Pastor Ric's message almost a year ago concerning the sick of this world and the whys to it all.

To give glory.

And as I continue to follow Chris Krauskopf's journey I wanted to respond in the guestbook only to find Sarah's mother's words--something I've heard over and over sung in Handel's Messiah and had been placed on my heart from my reawakening in my walk with God.

I know that my REDEEMER LIVES.

And reminded of what my "other" Sarah reminded me as a young Christian, God rains on the just and the unjust.

And today in worship--it hit me--He gives and takes away.
Yes! He STILL loves me--all of US. Everyone has their "stuff" their problems--and HE never gives US too MUCH.

Olivia is His, David is His, Dave is His, I am His.

He has flooded me with gifts of friendships. A renewal of committment to Dave, to my children as not just mother and nurse, but teacher.

Recently talking with another mother in charge of church duties remarked to me--that I can see the details and big picture.

And as I write here, allowing my words to just flow from heart to finger tips to a keyboard--

It hit me.

That is the key. As one who has a Hope of Glory. That is the BIG picture. The sickness, sorrow, shame, anger, and all the good of love, joy, tears, all could be viewed as the details to this big picture.

I am laying down all the above details and say--no cry,

Yes Lord Yes.

Friday, November 26, 2004 9:05 AM CST

New Photos.

David seems better--less coughing. He slept with Papa last night after scanning a few states with Papa's atlas he takes with him everywhere.

Yesterday was peaceful and quiet. Less piano with David not feeling well, but Olivia's chatter and full energy flowed throughout the house.

She made the scrambled eggs for David and Papa's breakfast, helped with the Thanksgiving feast, setting the table, she even did some more additions to her place mats she made for everyone. Each made their headband with feathers.

Olivia is nothing but pure joy to be around these days. She is just so full of life.

Wednesday Olivia received an invitation to her first real "girl birthday party" in the mail. Inside the card was a drawing where ML had drawn two little girls holding hands. Olivia was so touched; and hung it immediately. Then came to me and whispered, "How do you spell, I love you, and I will come to your burtday party"

Off to the kitchen table to write it all out. M-s looking like W-s and W-s looking like M-s. It was so precious I hated to send it off to the mailbox. Which we'll do today.

Olivia continues to search and learn more about God who created her in such a manner. Dave got to hear the bulk of such conversation last night. Maybe he'll share some time. As I want to have it on record.

Giving Thanks.

Praying for~

Natalie and her family, Darla, Sean and his family, Kyle and his family.

Tuesday, November 23, 2004 10:51 PM CST

Tomorrow is Dave's birthday. It was 8 years on this day that Dave and I met face to face. He drove up in his Zcar as I waited. We ate a meal while he looked deeply into my eyes as I told more of my story and felt as if this man did care. We held hands as we walked along the Ohio in Madison and hugged at my Dad's '76 truck I had borrowed that day. He was the boy next door who had lived a life before, but was mine that day and from then forward. Dave and all his impulsive ways, tender, gentleman. I love you.

David and Olivia now know that both of their parents were divorced. This happened on our drive to Home Depot as they were asking questions about a little boy who didn't live with his parents. David's concern was that Dave and I were going to do the same; isn't that the fear of all children; it was mine. We talked through it, but Olivia was driven to know the name of my husband before. She would not let "him" go for some time, but David squelched it as he tends to, with, "I don't want to talk about THIS anymore."

Me either!

MERCY!

I received a sweet email from Grumpa Jerry today relating Olivia as a flower, it was interesting as Olivia claims she wishes her name WAS Flower.

And she is LOVING the paper dollies from Miss Donna--cutting away.

She did vomit this evening, still a bit pale, but enjoyed the trampoline that Miss Kim returned today. Had some tummy pain but syringed out the belly, green bile but is having good stool.

David on the other hand is NOT well at all. Breathing treatments and running nose, eyes, miserable. I miss him so much when he is sick. He is such a huge help and a SPARK around this house and when he grows dim we feel it in the most subtle of ways.

God heal his body.

Be with Jordie as he heals.
Sean.
Natalie and Hope, Zachary and Allison.
Kyle.

Monday, November 22, 2004 8:01 PM CST

David is devouring his piano books and after the recital yesterday of a couple of art students he and I both agreed it is time for someone to help him learn piano.

So starting December 2nd David will have an OFFICIAL piano TEACHER!

Got two Christmas books for him--of course he can't keep his fingers off the KEYS! Jingle Bells in SLOW motion--with his singing along with it.

Today we ran many errands and many stops to insure home days to follow.

Gearing up for Daddy's 51st birthday and Thanksgiving.

Last night Olivia had blood in her J-tube about 2 inches worth. But thinking it may had been her wrestling and running, praying so.

Other wise--she looks great, eating and happy, but a little pale. In two more weeks I'll draw labs and see what her iron is.

Received her clinic update letter.

17.4 kg which was an 800 g weight gain.
Height is up to 106.2 cm which represented 3 cm of linear growth. Both over a three month period.

Calcium, phosphorus and magnesium were all slightly high and therefore her TPN will reflect that.

David playing piano--Olivia drawing her faces.

Sunday, November 21, 2004 12:38 AM CST

Once again Olivia's performance at basketball a complete treat with dribbling 1/2 inch off the floor to basket shooting barely over her head or behind her and her looking on to me signing "I love you". Her coaches are so absolutely tender with her; so blessed by their efforts.

She did however take a good spill and tears poured immediately but I coaxed--bribed her back onto the court and on the way home she announced the next time she has a GAME! So excited for just the opportunity to be involved in this sort of activity.

David dribbled all around which has me in awe at his improvement! And after a few weeks of effort has completed his FIRST piano book and onto the next and adding two other books to his collection. He loves playing the piano--which is pretty much non stop throughout the day.

Today was the first time I played in church my brother's clarinet. There was a very exposed part for the clarinet and it went great! Tears! Overwhelmed by the fact I was playing my brother's clarinet that he played as a boy--and how it was "Clari's" first time--tears rolled down--helping with wetting the reed.

Taught the Preschoolers a song they'll sing in church in December. I just love their voices and facial expressions; trying so hard. This will be big stuff; glad Grandma Logi will be here to enjoy.

Olivia is next to me with her little family--in a full blown story. I catch myself when she says, "Mama"--then I get that look--NOT YOU, MAMA!

And David at the piano--

Life is tender and precious.

Friday, November 19, 2004 8:31 AM CST

The rollercoaster ride has picked up speed, whirling around corners with our arms up high and hair blown behind us all the while with smiles for the moment.

Although an hour before leaving for orchestra/AWANA, Wednesday night church Olivia started to vomit. Bags attached to her tubes off we went with them in her canvas bag along with a puke pan. She needed it once during orchestra practice, but overall she was coping and wanting/needing to be out and distracted.

Daddy brought her home early but all was well.

Something new and exciting has and IS taking place--because we are IN a PLACE for things like this to happen. When explaining Olivia or answering questions I feel so--reassured that God is indeed in full care of her (all of us) and He is with us. There have been so many different places I've been with God on all of this. I want to remain here for the rest of the journey but I know more valleys and mountains must be explored and visited for growth to continue fully.

Yesterday was Olivia's last "Fall-Reading Circle". They had a little party and Olivia brought sunglasses for all the kids. She had a blast. But David and I noted that (Olivia's last opportunity to participate as next Fall she'll be Kinder aged) Olivia really has outgrown Reading Circle. I love to point out how Olivia is growing to him as he is more able to understand she is more independent!

AND David.

He took his Kindermath test and did so well. We'll be taking a break from a math curriculum for a bit as I'm not sure where to go from here for him. So we'll be using the "Rods" that cousin Heidi sent for a new slant and will introduce pre-algebra concepts. But the most remarkable thing has occured within David and that is his joy of playing piano. He plays throughout the day equaling well over an hour and mastered two songs yesterday. He then moves right on to the next. This sends chills and I can't help think he'll be accompanying me on the flute one day.

And FINALLY Greg's old clarinet (the one with FORD for President sticker on it) was READY. Two months I dropped it off to get a rehaul and now it is HERE. Although playing the flute will always be my first love, learning another instrument is like a new language! When I hear a clarinet it always pricks my heart back to my childhood when Greg would practice or perform. Makes me feel closer to him when I play.

Oh Joy.

Every step I take I take with YOU, Jesus.

Wednesday, November 17, 2004 12:37 AM CST

Others.

J
O
Y

Thinking of others.

Jesus

Others

You

Working on that around here; running off to Walmart to "get" for others and with it "praying", "thinking" for other kiddos.

Natalie is struggling and last I spoke to Hope this morning was in the OR. Major bleeding.

Makenzie is in need of special prayers of healing and protection; she had a small bowel transplant.

Sean is away from home and will be for more time; praying for healing and correction in his body.

Precious in His sight. Carolyn, Jeremy, David, Noah, Kyle, Kody, Sam, Samantha, Heather, Hannah, Angel, Zach, Samuel, Colyn, Stacey, Izzy, Alycia, Ian, Em, Nina, Carter, Patrick, Miranda, Jordan, Carolina, Kourtney, Killian, Derick, Sara, Ray, Devin, Tiffany, Allison, Alicia, Malisa and even a little girl named Olivia.

For all the Moms and Dads and siblings may they be enriched to a fuller life because of their calling to a different path.

I hate to list as I'm sure I've forgotten many precious parts of our family puzzle, but please those of you who read here and believe in prayer--if you would lift these children up to the One most High.

God save the people.

To Jesus be the glory.

Tuesday, November 16, 2004 8:05 AM CST

David helped me pick out the pictures and when he saw the last picture on the photo page he too said, "AWWWWWWWWWWWWWWWW", which is one of his phonics combos. The song for it says, when we see a baby we say "awwwww"--Olivia is SO cute in her basketball shorts and t-shirt not to mention how she tangles with the ball.

Today is Aunt MIDGE! The kids are so excited to have her here and so I think I'll slip down the hill and get my brother's old clarinet which has been in the shop for months and pick up another piano book for David and get one for Olivia. David is devouring his piano book ever since I figured out how to keep him motivated. Playing the flute soothes my inner soul, but for some reason I feel that I should be playing the clarinet now. I think it is a way to feel closer to my brother and who knows, maybe one of the kiddos will play although Olivia wants the flute and David the trumpet--what about VIOLIN OR CELLO--I ask?!

Our vacuum cleaner bit the dust seems like WEEKS ago and we (all) are anxiously awaiting the arrival of our NEWEST contraption. David's nose was found pressed against the window all day yesterday spying for UPS, so today is Olivia's TPN shipment and supplies and HOPING FOR A VACUUM as well!

Stepping out, step by step, day by day. Although it is SO encouraging to see D & O doing so much in their worlds; it also scares me. What ifs glare but I'm trying to see them for what they are truly just IFs, the fear of when or IF something happens--the disappointment of missing out on their basketball, art, music--church--all of this, but we will make a way.

To Jesus. For Jesus.

Sunday, November 14, 2004 7:11 PM CST

Peaking into the window I saw Olivia being "Simon" during game time of Sunday School. I had wanted to check her pouch, but clearly she was not in any need of my help. It was a glimpse I rarely see--just her movements, her smile, her little dress folded up in front from repeatedly bending down to pick up the bean bag--she was so content and happy--looking so typical through that door's window--this picture without the sound of her chattering.

I must look like an overprotective mother to most peering through that window. But it is different from a year ago, or even 6 months ago. Now it is to maintain that trust of our being there IF and when she needs our help.

Smiles are abundant these days.

Little to NO pain--Olivia's belly is flat and having the energy of a 4.5 year old little "gill".

Yes!

Saturday, November 13, 2004 2:26 PM CST

"Awwwwwwwwwwwwwwww"--

If that is a word that would be best to describe Olivia on the basketball court.

The ball looks as if it'll knock her down but she wrestles it into control each time she is thrown the ball. Her dribbling is even cuter--she is practically bent completely over as the ball leaves the floor about an inch a couple of controled times before it rolls off into oblivion.

She loved playing defense and really grasped the concept fast and was a great rebounder--I think football would be more her sport the way she tackles the ball into submission.

After her practice we had an hour before David started his own so the kids and I played on our own little court. By the end of the time Olivia was throwing the ball to make a basket which would FLY over her head backwards. It'll be fun to see her improve mainly because there is TONS of room.

David has really shown such a major jump from last years basketball experience--dribbling and even making baskets from a higher hoop than last year!

Once again we are blessed with very special people coaching; what a neat experience!

Hoping to use our Y membership to get in some much needed basketball practice--great physcial education time.

BASKETBALL!

Thursday, November 11, 2004 10:30 PM CST

Fog, rain and more rain.

The weather forcast was right on target--RAIN!

Olivia had to be awakened this morning in order to get ready for clinic. When reminded that we were going to stop at the gift shop for Grandma Bert's birthday gift Olivia's first words of the day was that she was going to buy Uncle Bill's birthday gift. Well, that isn't for a few months--maybe he'll get it on time?

As we backed out we always stop and pray; David piped in "THANK YOU FOR THE GOOD DOCTORS AT CINCINNATI CHILDRENS"!

Yes, Thank you, Lord.

Clinic!

Up an inch and gained weight, going to tweak a bit on the TPN and not due back for another THREE MONTHS! When I began my sheepish excuses about Dave and my laxing on the numbers keeping Nurse G. did her nod and remarked that WE know her best KNOW WHEN she needs FLUIDS which has released us from a task I've not enjoyed. No more INS and OUTS tallying (for now)!

I'll draw IRON and regular TPN labs in 4-6 weeks at which time Olivia may need IV iron; we'll infuse at the PEDS office and can take 2-3 days at three hours a stay. Sounds like some good school time already getting ideas on making it fun for us all.

Liver and spleen felt great to Dr. K. and they were so pleased not only on the medical aspect of Olivia but the whole child--all that she is doing and accomplishing.

She was quiet and nursed a bit prior to Dr. K. coming in--the longer times between clinic does make it hard on the flow of the relationship, but at the end--Nurse G. could NOT get Olivia to BE QUIET. I always cringe when they (D and O) get started, WHO KNOWS what they'll draw from their well of knowledge and EXPOSE to the world.

Thursday, November 11, 2004 8:11 AM CST

Clinic day.

Will be interesting as I'm going with only a weeks worth of numbers; and highlights from the last three months.

Olivia continues to really shine developmentally--emotionally, physically and spiritually.

Ever since I announced she would indeed be in Kindergarten next year she has worked so hard in school, writing out words from her dictionary, math, learning her ABC sound song. I believe I'll start her on K math in January. She is taking showers, her own tube care, sitting on the potty.

Physically she is more active than ever--playing basketball, hoping we can find a ballet class with her two little girl friends.

Spiritually. She is in constant song; recited the whole of John 3:16 last night.

Anxious to see Dr. K and Nurse G. Olivia made a cut out spiral thing for Dr. K--she drew juice glasses and several doctors. What a funny girl.

Tuesday, November 9, 2004 9:30 PM CST

A hijacked journal entry:

It�s been a good week, however it�s now over. Back to work tomorrow. Mommy has arrived back home, the house and kids have been whipped back into shape. (Ahh). I am glad She cut her stay short; she was much needed.

The first night I was hooking her up, I had problems. I think it was one of the reasons that Sheila came home; I freaked her out the first night she was gone. After hookup, the pumps started obstructing with a line blockage. Our standard hookup is two different IV bags (one for Lipids (fats) one for TPN) supplying two separate pumps. Pumps are connected separately into a �Y� loop, the base of which then gets connected into the C-line. The �Y� and pumps and supply bags are freshly connected every night. For both pumps to indicate blockage indicates either a C-line problem (serious) or the connector itself. I called Sheila frantically. I had started breaking things open and trying to flush things, all of which jeopardizes your sterility because lines are opened up and being held. Nothing was working. I was sure it was the line itself (it had to be). The blue connector (I had used it all week and it had been fine. While I am an engineer/mechanic, one still panics. Sheila talked me through it; it�s almost easier for the (helpless) disconnected one to remain logical. It wound up being the blue connector; it has a small check valve which must have jammed or something. After taking it apart from the �Y� loop, the line flushed fine and the pumps and Y-loop re-connected and worked just fine. Weird and scarey. That was the start of my time.

My friend says his measure of success is that he ends his babysitting with the same number of kids as he started out with. By that measure Daddy-O succeeded, but it was a white knuckle flight.

So many of our friends around us are hospital bound going into the holiday season. My heart aches for them all. In our circle, the measure of a successful holiday or birthday is to celebrate it at home without drama. With holidays coming, you almost are always expecting the other shoe to drop. It�s a shadow over the whole holiday. The only way to get through is to focus day-to-day, (live in the moment), and appreciate what one has in that moment. If I had one wish, it would be for the power to heal. Maybe I do, maybe we all do, in the form of prayer. To our friends, know that we pray for you every night before going to bed. I trust that God listens to the little ones when they pray.

I have another friend who reminded me how short the time is that any of us have with our children. The average kid is pretty much hanging out on his own by 13, and by the time they get car keys, whew, they are gone gone gone. So the typical parent only has from about the age of four to fourteen any way. It makes me miss my parents. I can only imagine what it is like once your children are grown and have left your house. It�s all too short. (My solution, ground my kids starting at about age 9 until they are 50.)

They go to clinic Thursday. I�ll be back at work. We expect a non-event but one never knows. Those are full days, further complicated by the fact that David has basketball practice at 6:30. That will crimp Sheila�s usual task of doing something after clinic to make it an adventure. She is a great parent (good thing because I am only average.)

Well, I don�t have much more in closing. It�s been an exhausting time but good. It is just nice to have us all back together. I am sure "She" will once again start journaling in the next two days.

Saturday, November 6, 2004 7:12 AM CST

Day Three � a Daddy under siege:

Well, we survived both AWANA and Reading Circle/Chess Club. These are the biggest days of our week. Today (Friday) is a down day for recovering. I have to admit, I do not have �the flow� that Sheila has developed for each day. I am slipping: David is doing about half of his chores, we�re doing about a third of home school. I am getting rolled over here�.But we�re happy. (until Mama comes home and straightens all of us out.)

It�s been sweet being home. The days have a quality that a day at work doesn�t; maybe it�s the availability of hugs whenever I want. There is also more chaos; I think the kids are winning. (There�s two of them, and they work together.) The sentence for the week thus far: �David, in this country we don�t negotiate with terrorists.�

Day Four: Negotiations contiune.
Friday was kind of a waste. I spent whatever time I had all day either doing bills or arranging the Blue Cross Blue Shield statements. Recently they (BCBS) had decided to hassle the home care company. Livvy�s care is expensive and it is worth their finding a thousand ways to delay payment while they play with the float. It happens once a year and is always a hassle. I somewhat got on top of that but as a result, our down day (actually a pajama day) was depressing. All that beautiful, cool sunshine and we never went out in it. Having blown the day, I felt bad about it. I mustered remaining forces and decided to go for a walk in the dark at 7:00 pm. The little terrorists insisted it be a bike ride. Good enough, negotiations concluded, we bundled up. Had a great time in the dark (with our flash lights of course), them riding, me running. They wore me out. Did TPN and we all headed to bed.
�Daddy, you didn�t feed us dinner.�
�You didn�t want any thing.�
�We�re hungry.�
�That�s your own fault.�
�.�If I was going to make something, what would you want?�
More negotiations. We had cheese, crackers, apples in bed (big mistake.) Livvy-terrorist wanted a cheese roll-up (�I don�t like that kind of cheese.�) (I tend to give in when Livvy is hooked up and thus immobile.) Cheese roll-up it was.

We ate, chased the cracker crumbs out of the bed, re-brushed teeth, and settled in. It was a good day after all.
***********************************************
Sheila is coming home early at my urging (or maybe it was more like whining.) In these last few days, I have learned some powerful (terrorist) negotiating techniques. Sheila, being a few days off her game of how to handle terrorists, couldn�t hold up. So MOMMY IS COMING HOME TONIGHT. Whatever it takes to make this up to her, I will do it (gladly). Just come home, Sheila.

I need to scoot. The church basketball coach called for David; he has practice at 2. A day later, Olivia�s coach called; she has practice at 1. I have no idea where their stuff is. I had the foresight (vision?) to keep their sweat shirts and tennis shoes out from last night�s ride. That was the easy part. Now to find other stuff. I suspect there might be a 12:15 run to Target today. I am so apprehensive about her playing. Wish Momma was here; she is fearless and embraces adventures.

Life is beautiful.

Daddy-O

Wednesday, November 3, 2004 3:16 PM CST

A highjacked journal entry
Today, Wednesday; my first day alone with the kids. (�Day One � a family under siege.�) We miss Mommy. In fact Olivia said that last evening (Sheila had only been gone 5 hours.) �I really miss Mommy.� Yep, Baby Doll, so do I. We made a run to Kroger, and stopped in to my polling place on the way. Showed Olivia the machines, the ballots, etc. She acted interested. (And I felt very civic.)

It�s a gray day outside (and inside). The kids and I have had a good day already, but I�ve got the blues. There is so much I fear about this path. Livvy just fell asleep on my arm during nap. She was tired and I knew she would go down quickly. You know she has gone down hard when she gets this little snore that rattles the top of her nose. It is so adorable. She just breaks my heart. I want this life to go on forever and I am so afraid that it won�t. Such thoughts can absolutely paralyze me if I let them run. So I don�t.

Olivia is hooked up to fluids (as of about 3 o�clock.) We�ll barely have enough time to pump 500 cc�s in before we are unhooking and heading to AWANIS. It is really tempting to blow off church tonight. I dare not.

Sheila made it successfully to Albuquerque. (A place I can never spell without a spell checker.) She had a good flight, and long quiet layover in Houston and lots of time to herself. A valuable commodity that I know she needs. And perhaps, I�ll get a few of my house chores done. The list is extensive. I am very pleased that Sheila is able to visit her family there. It is a great introspective place for her. (Just don�t forget to come home, Mommy).
******************************************************
Only one comment on the (scarey) election. In my 50 years of life, I have never gotten into an argument with my parents over politics. This year I did. A very divisive election which I fear characterizes our country.
**************************************************
David has just informed me that Blue (originally Sheila�s cat, then our cat, then her Dad�s cat, and now apparently ours again) might need to go to the Vet�s because her ears are bothering her. Put it on the list, David Boy.
*****************************************************
Hmmm. 4:16. Two hours to departure to AWANIS. Will we make it???? Man, I don�t know where any thing is, much less what it is that they do need.. Will worry about it in like 30 minutes.

Closing thoughts till tomorrow (or so). Does anyone else think that DHL�s yellow and red delivery vehicles look UGLY? I do.

Time to start looking for stuff. Take care and love to you all.

Daddy-O

Monday, November 1, 2004 3:32 AM CST

As I lay in the bed already; David off to look for Prince Caspian Olivia hopped off the bed, "I can look over here even with all my tubes." "Over here" is Olivia's library. Many of which are chapter books from Papa's 4-6th grade years, library books, hodge podge of variety levels of reading. She is THE book girl. I love it.

5 different lines and/or tubes. Incredible!

Prince Caspian unavailable we read a book about the Earth. Crust, mantle, outer and inner core--all so fascinating--solar system--galaxy. Blows my mind.

Olivia has slowed on the eating front and when I park there I almost panic because she's not receiving anything other than TPN. But at times I do think she is getting "something" from her nibbles as her pouch proclaims, but still?

After my trip to New Mexico that immediate Thursday we'll pack up and off to Cincinnati for clinic. Anxious to discuss enteral feeds and see where she is weight wise.

She "looks" great.

Sunday, October 31, 2004 10:48 AM CST

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
We are His daughters and sons--we are the colorful ones--we are the kids of the King--REJOICE in EVERYTHING!
Keith Green
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A Family Festival at our church last night--lots of smiles; David Peter holding David Potts' hand--sweetness.

Was fun to see so many of our church family--but to share it with our Brian, Kim, David, Sam and Joe. Joseph and I are buddies.

Little kiddie rides, hay ride, carnival games, inside air filled games, seeing so many Cubbies--bending down to sing a part of our songs and have them finish the song--with such ZEAL!

But there in the front was a fire engine and Kosair's transport ambulance. The kids took a quick tour; I snapped a photo of Olivia inside. She takes my breath away.

Lump in my throat. My baby rode in one of those with morphine being administered.

Can't camp there.

Daddy and David went to church and I stayed back with Olivia to regroup on many fronts.

Tonight we'll join our Potts for dinner.

JUST TWO DAYS and I'll be FLYING--my heart already aches for my children--although as my Heidi says--I'll come back refreshed--ready.

Traveling to see special folks and places has always been one of my top favorite things; am so blessed and thankful to have another chance to do so.

Excited for the next few months of holidays--making the moments count.

Friday, October 29, 2004 4:14 PM CDT

You have to love Dave. There are things about him that can drive me completely insane. The one thing about Dave is that he is THE MOST endearing, kindest and funniest soul.

Olivia has him wrapped. Some mornings it starts around 4:30--always with a whisper she'll start "When is Daddy coming?"

Water.

Before I head out to my Dad's with the kids, Mortie (the bird), Midnight (the worlds biggest cat) and Eltie (the world's oldest cat) yesterday has to be recorded in full.

Maybe my laziness, but I was reminded that the urologist said it would be GOOD for Olivia to urinate on her own. So we started working on that and indeed the girl can GO. You have to remember for almost 3 years she has not needed a toilet like "most" folks, only to puke, or vent a tube or to empty a pouch. So this is FUN stuff for her.

AND she is taking showers. Just like her friend Colyn suggested almost a year ago. She loves them like her brother and before she got in she got ALL the supplies out needed for afterward. Overnight cathing stuff--dressing change box--new pouch kit--she was READY!

While I put Olivia back together after shower, David practiced piano and Daddy working on preparing TPN and lipids.

What really moved me was David working on 5 songs. He has to play 5 times for a star then an additional 3 for a sticker--then move on to the next song--after he has earned 5 stickers he chooses a "sweet treat". Thanks to my piano teacher friend--this is WORKING! He is chewing up songs and learning them! He is GETTING it! After finishing up Olivia (He has to play star and sticker songs for me to approve) I sat with him.

He was so excited. Hugging me in between playing each song.

It was such a delight.

It's been a hard long week--Dave and I both in our own funks but I think we are seeing the light again. It is hard when we BOTH are in that place at the same time.

Time to unhook and prepare for a FULL day.

God speed.

Thursday, October 28, 2004 8:55 AM CDT

Looks like Olivia may be coming out of her flare. The last few days she's required extra fluids during the day and to be vented on her G and J. She went last night to AWANA with both in her canvas bag. I peeked into the gym and saw her friend carrying it for her. She has come a long way.

David.

Davidboy.

David is such a delight. Having started on kindergarten work last year although not Kinderaged he is bound and determined to tell everyone he is in FIRST grade. Last night his SS teachers came in to get their son and David was with me. I don't take David to SS because of orchestra so I've not talked with them. They said how much they missed David and then I told him he was not FIRST grade aged--because Daddy--put him FIRST grade SS. They had no problem with it and said what a great asset David was to the class. Then later his Leader from last year who I've come to totally respect and love. (She brings two little neighbor girls every Wednesday night--one is a Cubbie the other a SPARKIE friend of David's. And the Cubbie is one of my best Cubbie friends) We giggled over how much David has COME OUT since last year. He is so outgoing, loving and friendly. So unaffected.

On the way home we discussed his tooth and POOF! He has lost his second.

I put TWO dollar coins into a baggie under his pillow. The fun part is this morning when he came into bed with Olivia and me he had that jingling baggie. Oh Davidboy.

Today is library day--my favorite day.

Still not 100% but hoping for Papa's tomorrow to return his kitties and bird. I can't wait for him to see how much the kids have grown over the last month.

Tuesday, October 26, 2004 8:14 PM CDT

Not able to sleep and flipping through channels last night and literally never watching TV during the day--as it gives me the sense of life passing me by, but I'll succumb late at night and when I did happened upon the Brooke Ellison story. I had seen her interviewed on a talk show a week or so ago.

Not sure who the actress was who played the mother, but whoa did she "get" the part.

The scene of the mother bathing Brooke before her first day back at school (which was a major feat) in the morning was heart wrenching. The power of courage oozing from this young girl to continue life even with such a major impact of change.

The element of being separated from the other children was very powerful which is such a major concern of mine always.

Amazing strength exhibited not only within Brooke but her mother.

********************************************************
Tubes and lines with a pouch.

I laid there with the earphones on while watching this story and could not help but look at my own brave courageous girl.

It is those moments as of late when I really look at her and all that is going on during the night to maintain her life that I kind of feel that grip of fear and wonderment at the same time.

Olivia's nutritional needs are such that she has two "lines" which provide her IV food. TPN and lipids. Most people have both in one bag therefore only one pump but our doctor doesn't and since Olivia is infusing at night it is not an issue. We use a "Y" connector so she only needs ONE central line. We have to spike the bags and prime the lines. TPN has vitamins and medicine added to it. This is a time which I'll listen to music and sing. Dave usually primes the lines while I scrub her cap which is on the end of her central line.

Then she has her G-tube always to drain at night--sometimes there might be something in the morning, like this morning dark green bile which tells us her GI tract has slowed or stopped.

Her J-tube used to (and we pray will again) supply her with enteral feeds or formula feedings, but she has not tolerated much lately. So we have that to drain as well. Dave and I think that ZELNORM and keeping her J to drain every night has helped in the distention.

Then there is her overnight catheter which if you have ever had a surgery know what this is. Olivia has one every night and then we cath her once or twice during the day.
I usually will put the overnight catheter in before or after TPN is hooked up. I like to do it first as it settles her in for the night. Testing first the balloon to make sure it will inflate and deflate properly. Olivia takes the tape off her leg every morning and after I take the water out of the balloon now takes the catheter out herself.

In the morning everything is unhooked after infusing, dumped, thrown out, in regards to her line scrubbed and maintained sterile.

She naturally and slowly is learning her care in her own time.

Although a full belly day--with G and J accompanying her--several times Olivia squealed with delight.

Ah--that heart smile--smile on.

Monday, October 25, 2004 4:25 PM CDT

No strep for David just some weird viral thing floating around this area. David was beside himself when I called and made the appointment. He just melted into me in a ball of tears. So not like him to cry, although a tender spirited boy he rarely cries unless he is TIRED and SICK.

Olivia responded to all the doctors commands on David.

She was delighted DAVID was in the spotlight.

With naps part of the prescription we came home and I adhered to the orders. Olivia eventually but David did not.

I feel a lot better; as most of you mothers know--WE are NOT allowed to be sick.

Sunday, October 24, 2004 2:29 PM CDT

Just over a week and I'll be in New Mexico.

Talked to my Mom last night who is visiting Greg in Tahoe. Both of them have SORE throats. Realizing how close MY trip was I began to feel scratchy. I do believe it is a Lois trait she has pass onto her children. If we get overly stressed or know of something big about to happen we get the sore throat.

Waking in the middle of the night I knew I was in trouble for this day at least. Dave working diligently on the leaky pipe from the master bath, Olivia on fluids and both kiddos a bit cranky and Mama with the cold symptoms.

Olivia looks behind; her face a bit gray with circles, but happy and doing relatively well. She has pudgey fingers! She has good cushion on her bones.

BUT yesterday David played his first soccer game IN a DOWNPOUR. And _I_ am the one who gets sick? Anyway, he loved it and Dave and I were very pleased with how he had improved since the VERY first game to this last.

Olivia concluded that she would NOT play soccer and I tended to agree and we began a list of the "can dos" which pleased her.

Papa VIRG arrives to his home in Indiana tonight. Daily I've talked with him or heard his messages of all that he saw with bittersweet tears. Chasing a steam engine, seeing the snow, wildlife, to visit his dearest land. Will be good to have him home again. He drove past our "old" house outside of Helena, and passed by the "Forty Acres" in Missoula even got up to Essex where the good people there took good care of him. All around he traveled the old man with his white hair and gentle heart. How I love my Dad.

One who can see the good in anyone. And the beauty in any place.

Thursday, October 21, 2004 8:42 PM CDT

Wednesday nights usually zaps our energy for Thursday.

Library day.

We were surprised with a fire engine during reading circle time. Olivia was right up in the thick of it; David needed coaxing.

Afterwards Olivia began to decline again and as we walked into the Chinese restaurant she came out and vomited in the street. Hooked both G and J bags and she still wanted to go.

After coming home from a homeschooling meeting (which was HIGHLY INSPIRING--major blessing) kids in bed with Daddy-O watching the ST LOUIS CARDINALS (Where ARE you REDS?)--Olivia piped up--

I'mmmmmmmmmmmmmmmmmm

HUNGRY.

Toast?

Yes! TOAST!

To toast.

Praise God.

Wednesday, October 20, 2004 10:45 PM CDT

Olivia's HALF birthday--today.

If my children had their way we'd have a birthday everyday. David immediately sang happy half birthday to Olivia; I as well, but boy does that boy jump on anything do to with birthdays. Both tried to weasel all sorts of birthday things out of me, but I stood my ground.

:)

The whole morning was all about school. Olivia and I worked on her Cubbie project--making a picture time line--got all the old hard copies which Mom used to give me.

Olivia delighted in herself as a baby. We all did. There was no Pre-tubie feelings, but just looking at my baby girl and yearning to feel her that size again.

David alongside working on his reading, writing and spelling.

But time for church and O's belly is a BIT distended so put on J-bag and the flood walls burst. She wore it all through orchestra practice and I could see she was slowly wearing out.

By the time I got to her in Cubbies she was thirsty and put her G-bag on during music. Usually sitting RIGHT in front of me, but not tonight--she had attached her G-bag and around her sat 5 or so kiddos watching the contents in her stomach flow. Oh my!

Olivia said she felt weird.

I told her I have felt weird many times; different is what I prefer to say.

Told her it was God's gift to be different.

For now that stuck.

Tuesday, October 19, 2004 7:42 PM CDT

Our rain let up today and actually was warm and humid. After finding boots and bulbs we headed out to dig holes; David off to the far corner and his garden was not heard of until it he was finished. Purple tulips and crocuses.

Olivia tired of the digging or maybe from my saying deeper but she ended up being the bulb placer and coverer. Afterwards she helped me out back with the hens and bunny. She really was right there with me wanting to help; able to help; physically strong.

In September she weighed in at 37.5 lb and last Thursday she was 39 lb. She is not receiving any extra (icing on the cake as we call it) calories from enteral feeds (Jfeeds) right now as we are determined to wait it out until her next clinic where we can discuss the possibility of changing over formula. But she IS eating which has me in a cooking frenzie and David is trying new stuff too.

He loves Grandma Bert and Papa Pete's sweet potatoes and gobbled the pumpkin pie that we made.

Funny how having a kiddo who "could not" eat for a season really stunted my love for cooking but now realizing that it isn't about eating always, for Olivia it is the preparation, the table setting, the socializing during the event and even the clean up which helps make her a part.

My my--how far we've come.

Chronicles of Narnia almost finished; I had not read the book since the very first time and as a 27 year old adult. As I read the sacrifice of Aslan yesterday to David and Olivia they were so utterly captivated. What is so incredible is to hear their recounting the story and what parts they pick to illuminate.

Last night while reading _Animals in the Woods_ a book about animals and what they can be found in the winter, spring, etc. Reading really is such a great tool. There a sentence read something about a cardinal perched on a bare shrub. Asking Olivia was bare meant and giving her a definition she said it is like bare bottom (of course) or bare feet.

She was so cute yesterday with the tape on her G-tube up near the disc (which means up by her belly) and with that made the G-tube hang lower than her J-tube and hanging out from her T-shirt. It was a cute tubie thing.

And David boy. Extraordinary transformation has taken place in this boy. One who fought me with every fiber and gave me the angry eyebrow if I even THOUGHT about his chores or having to do "school" has moved to yet another stage. HE LOVES to do both. More so the chores as Saturday is allowance day. Today he stood on the deck screaming at Olivia since she was helping with the hens--HIS CHORES. (Oh my oh my!) He was afraid I'd subract from his pay.

How could I? He and Olivia unpacked her supplies (huge box) and delivered the TPN and lipids to the basement fridge with a little help from Mommy.

To Jesus.

Sunday, October 17, 2004 9:59 PM CDT

**NEW PICTURES**

And in closing of the day I had to stop and recount parts of this journey.

After having my post coffee nap and as agreed we took 30 minutes and ALL worked to pick up, clean, etc. What fun! David withOUT a grumble and Olivia has found her niche in spraying and wiping clean surfaces. Then we all broke again into our spaces--David working a US puzzle and Olivia several different alphabet puzzles and I on the coming week's school folders. Daddy in the basement.

As I looked over the folders I was reminded how grateful I am to be ABLE to teach my own at home. Although I appreciate and ENJOY our schooling outside the home I relish our home days and all that takes place.

David stole Mordie's heart and had her perched on his finger. Mordie will cat call everytime _I_ walk by and has a "tweet" just for David and well, Olivia Mordie is still not completely comfortable which just about destroys Olivia (very much like the butterfly on David's shoulder at the zoo, but not on hers). So today David won Mordie and I do believe she even grabbed a hold of Olivia's finger too.

And I even got a good walk.

David had US all playing Monopoly. Even Miss Olivia can officially play along; David is such a whiz with the money, numbers, it all.

Praying this winter is filled with family games.

((NATALIE IS HOME!!)) Please pray for Hope that she'll get HELP in Miss Natalie's care. And Ian is doing great after receiving his GIFT of life--3 new organs.

To God be the ALL the GLORY.

Sunday, October 17, 2004 12:42 AM CDT

Sunday--a day in which we come together as family.

With Gordon Lightfoot's guitar strumming and Dave cathing Olivia, David writing tickets; I am here to release the pure thankfulness.

Dave stopped on the way home and brought a fancy coffee drink for as dessert after our Sunday feast. We drive separately sometimes so I can be on time to play in orchestra. From the "stage" I look and and their is Miss Smile in the arms of her Daddy-O. God, thank you. Thank you.

So, now my thoughts and cares pouring.

So many good things surrounding our family right now, mainly just everyday blessings that could easily be overlooked.

Olivia is thriving.
At her PEDs visit for her flu shot she had gained. She is NOT on Jfeeds, but is EATING on most days.

She is learning.
She proclaims daily she wants to do school ALL day.

David's courage to try new situations blesses me. He is growing in ways I never could imagine.

My heart pours out to my dearest of all, Dave. How he continues to nurture and support me as he did day one of our meeting.

Early November he will take a FULL week off from work so I can fly to my dear Tia and Tio in NM. Yes, again. There I will be surrounded in their love. How can it be?

I am reminded of hospital stays (even the shortest of ones) in which I am bound to do what many others tell me. It is this thought that propels me into living life.

Let us go and run for it.

Run.

Saturday, October 16, 2004 8:24 PM CDT

The big brown eyes can melt her mother but it is the heart smile which overtakes me. Tonight as Daddy watched St Louis (a rare moment to find Dave on the couch watching sports) David and Olivia crawling all over him with Miss Blue Kitty (I can see David's nurse wincing now), but it is Olivia who adores Blue in a totally fresh way. Carrying Miss Blue Kitty gives Olivia that Mama power. But once settled on Daddy's lap Blue--a cat who wrote the book on purrrrrrrrrrring--smiling in her timid way and if a little girl could purr it would have been heard from Olivia tonight. Her heart smile beamed--no teeth--just the perfect shape of lips into the heart.

At the dinner table tonight we started a new game. Riddles. Some were decent but towards the end Olivia's were so FAR out. It reminded me of the night when UB was here and we did the NO coughing ZONE game while Daddy did TPN. I guess it would be called the Gerund Game.

Just mild tummy hurts tonight--hoping it doesn't mean she in for an obstruction.

A boy on our TPNgroup got his call today for new organs. He is doing well--Ian is his name--if you feel led to lift him to the One who created Him.

Blessings this night.

Friday, October 15, 2004 4:05 PM CDT

SAVE THE PEOPLE
from GODSPELL

When wilt thou save the people?
Oh God of mercy, when?
Not kings and lords, but nations,
Not thrones and crowns, but men!
Flow'rs of thy heart, o God, are they;
Let them not pass, like weeds, away,
Their heritage a sunless day.
God save the people.

Shall crime bring crime forever,
Strength aiding still the strong?
Is it thy will, o Father,
That men shall toil for wrong?
"No", say thy mountains;
"No", say thy skies;
Man's clouded sun shall brightly rise,
And songs be heard instead of sighs.
God save the people.

When wilt thou save the people?
Oh God of mercy when?
The people, Lord, the people,
Not thrones and crowns, but men!
God save the people, for thine they are,
Thy children as thy angels fair.
God save the people from despair.
God save the people.
Oh God save the people!
God save the people!
Oh God save the people!
God save the people.
Oh God save the people!
God save the people!
Oh God save the people!

When wilt thou save the people?
O God of mercy when?
The people, Lord, the people,
Not thrones and crowns, but men!
God save the people, save us,
For thine they are, for thine they are.
Thy children as thy angels fair:
O, God save the people,
Save the people,
God save the people,
From despair.
God save the people!

God save the people,
O, God save the people,
God save the people,
O, God save the people,
God save the people,
God save the people,
God save the people.

An AT HOME day for sure; clearly relaxing with life slowed. But before Clifford and the evening push the kids and I cranked up "Save the People" a rediscovered treasure from my childhood. My brother sent the whole lyics of Godspell to me the other day--how relevant to today.

Olivia washed windows--all that she could reach and bringing up her TPN and lipids. David unloading the dishwasher and taking dirty clothes to laundry room. Picking up the weeks worth of stray heres and theres ready for a weekend.

Dinner then baths. Having scrubbed the tub as Olivia is demanding a bath; which is followed by a new pouch, new dressing and cap change. She loves her baths. There was a time I would NOT let her take one in fear of line infections, but so far she has done so well--she practically swims--well, I think she does. It is one of her dreams as of late. Hoping we can do something about it next summer. ((AUNT JANICE!:))

I am completely amazed that she has not had to endure the severe distention; could it be? Could her obstructions...

Tomorrow David has his basketball evaluation and then soccer game. Olivia too is going to play basketball.

Tender mercies.

Thursday, October 14, 2004 5:40 PM CDT

Neat day.

Flu shots, of course we were a bit late, how can one be EARLY for a shot? Both on the docket and they had bargained who would go first and with what prize at hand. I being the prize Olivia wished. Big cozy night sleep with her tonight probably with David at my side as well.

Olivia screamed her monsterous yell prior and all was washed away with the Charlie Brown bandage. David on the other had lost it completely. But managed to pull himself together and too wearing a CB bandage. Everyone was amazed as to how well Olivia looked. She is doing so well. THANK YOU LORD!

Off to a little bistro downtown for a quick lunch before Reading Circle and Chess Club. Olivia loves Reading CIRCLE--trucks were the theme for the day. David played game after game of chess then had a blast as well as Olivia with the other youngers there which all the Moms decided on the Riverfront Park to wrap up the time.

Hair cut on David's insistance; he is taking much pride in his hair.

Time for the BIG PUSH before Daddy even gets home so we all can be cozy tonight to tell of the day's events.

So blessed to have time with other like minded Moms--cool kids.

The fun part is most all of them are "my" art students!

FUN!

TO GOD BE THE GLORY!

To HIM!
TO Jesus.

Wednesday, October 13, 2004 8:25 AM CDT

Dave had a work dinner tonight which in turn left the evening with the kids wide open.

We did bed-school tonight with Olivia practicing her letters and demanding yet another number line; David worked on place values from a workbook I found on 2nd grade level to make him think.

Then David began to follow me and write and cut out the letters which spell the most beautiful wonderful sweetest name I know. Jesus.

Last week I taught Olivia's Cubbies

J*E*S*U*S No one better from the east to the west-Higher than the highest better than the best J*E*S*U*S--JESUS J*E*S*U*S.

I want them to know what JESUS looks like as well. David made one for the Cubbies; red letters cut out and glued onto blue with the two S-s backwards but yet so perfectly made. He has a servant's heart.

Thinking that stepping into a leadership role for Olivia's Cubbies might overwhelm our family--if anything it has increased our singing three fold. We are singing more than ever. I know there was a time when music fell silent but now it is the thread which binds us.

Several nights ago in thinking of leading such precious souls in music about our God; I felt His calling. It was to "do" music but I had been in turmoil as to when to stop moving along with the kids' ages. When I felt God's whisper on my heart saying to stay with K-2 and one day your own will come and help lead. I wanted to not say anything to anyone until at least January, but when I saw the Children's Pastor Sunday and asking him before I knew if they had found someone to lead SPARKS music (David's group)--I knew it was a God thing.

So after talking to the Commander of AWANA; I will be leading a fairly large group of kiddos right after my own personal time of worship.

Saying all this is a huge thing; I've always been there for Olivia. I can't even begin to put into words what it'll be like for me to see David in such a setting. To be "there" for him on this level. As he begged me to be a SPARKS leader this year instead of Cubbie and last year wanted me to be a leader for his age group in VBS. I would look back to where he sat many pews behind us (Olivia, David Potts and me) and see his brown eyes.

So after Olivia fell asleep I slipped on my earphones and watched Jana Alayra's video. She performed at a children's pastor conference I attended while pregnant with Olivia which changed the course of children's worship music for me--and our family. Her music ministers not only to kids, but adults as well. In the video she talks about having four girls and how one has gone to be with Jesus. At the concert I saw in person she talked more about this--I remember standing there with tears falling with my Olivia growing inside of me. But at the very end of her video made for children she sits on the steps of the stage and sings a song which has clips of her girls; it is a song dedicated to her daughter. At the very end you can hear her say--I love you Lynnie and a child's voice saying--

"I LOVE YOU MAMA"

It sounded just like David or Olivia.

I look at Olivia sleeping with her many tubes coming from her body; and I'm reminded of what truly is important.

To Jesus.

Sunday, October 10, 2004 8:23 PM CDT

Pinch me.

After cutting Olivia's bangs (she and I both tired of having to tie it back daily EVERY day) last night there was a feeling of newness in our home. Saturday was a meltdown Mommy kind of day.

Mommy has those days.

But today was glorious. There was a feeling of clean slates and clarity in my heart. David off to his Sunday school class and Daddy and Olivia waving to me from the congregation--to see them looking at me--my heart was full. Olivia determined to NOT go to her Sunday school class as she put it--they do not know me and may pull my tubes out. Not going to put that fire out as I'm not really sure I want her in Sunday school with a new teacher every Sunday--next year she can be with David. She has plenty of time with others directing her.

So a new week is upon us and Olivia's room is maybe 2etter shape than it was on Friday--switching summer over to fall/winter--folding--finding creative ways to store clothes--then I get a call from THE Auntie Midge. To the rescue? Hoping so.

Dave took the kids to say good-bye to our children's pastor and his wife; they are moving to Texas. Then off to the park which at that time I took a LONG walk with Kim and Sammy--to only meet Dave and the kids down the road for a ice cream and Mexican. IN THAT ORDER.

Overjoyed that Olivia ate much of her food--just sitting there like a typical family on a Sunday night--tears. David and Olivia hugs all about me and I scooped Olivia into the truck for the ride home.

In those moments where she is free to spill out all her girl talk--I sit and wonder why I am so blessed. She went on and on and on and on and on and on--

and on and on.

With her new bangs--clearly sure she knows-on and on.

Friday, October 8, 2004 8:12 PM CDT

Don't most full weeks packed full end with an exclamation point?

Wednesday night's AWANA was incredible on many levels, but one especially was that Olivia went to one of her leaders asking for help with her pouch--it needed emptying. Before I had begun Kid's Worship I checked in on Olivia and she said she was fine. But when she hadn't come to sit for worship I knew she was up to something. She joined the 40 something group of 3, 4 and 5 year olds squeezing in to be RIGHT in front of me.

Mrs. L. shared later the whole story and OF course I got Olivia's slant as well. It was such a blessing on both accounts.

Just so THANKFUL there IS stool.

Thursday was library day in which we spent close to 3 hours there in and around Olivia's Reading Circle. David helped clean up the tables after their craft and they spent time doing math and reading/spelling on the computers--something we don't do much of at home and now I am glad.

But today--Friday. Art DAY!

Some people can remember the day they came to God, or when they were "called" to something and I too--can remember the exact moment on both accounts. I was in second grade living outside of Helena Montana and there I knew I wanted to be teacher. Never did it ever escape me and the problem was to teach WHAT?

It was art, but God had once again given me the desires of my heart by allowing me to have the opportunity to teach many different subjects, but I do love art and how it can minister on many levels--for a shy preteen to teenager it can be a safe place--

Back to the exclamation point--

After an hour of teaching children from Olivia on up to teenagers art--still life drawing today--it is the most intense teaching I've ever done--not only teenagers but MOMs too--several asking ME for suggestions on their sketches--switching gears from not only person to person, but age--getting to really know the "person"-- we were cleaning up and I was still in my "teaching pumped up zone" and I heard someone say--

Sheila--your daughter....................

There was my beloved; with tears welling and a splattering of the most beautiful POOP--speckled with the palmentos from last night or was it the night before--anyway they were there--and on the carpet of our FIRST time using this space so generously offered by a church.

Dripping down her leg and into her "most beautiful sandals" and on the inside of her dress was her stool. Someone had tried to pick her up--opps.

Clippy popped off and there we have it. I LITERALLY thought about this the other night--thinking--that has never happened to us, but Angie's Noah--boy--has happened a LOT. (EVEN at AWANA!)

She and I had our clean up time in the bathroom--and I shared with another Mother Olivia's story--who turned to be a nurse at one stage in her life. What compassion I felt from the two Moms who "knew".

Cleaned it up--deep breathing through it as tears wanted to flow--something I used to do so easily, but now--I've learned to trade in fearful moments for composure--

AND Olivia saying yes, she was embarrassed--but off to play.

Off to play.

Praises. Tears. Laughter.

Love. Peace.

God.

Thursday, October 7, 2004 9:43 AM CDT

My brother's thoughts last night--

I remember visiting Taiwan and staying with a friend and four generations of family living together.

The home was large and spacious, and with the grandkids running around, all were filled with life and good humor.

Americans, on the other hand, are a diasporic people.

My Sister and I live a two thousand miles away from one another. Papa is also half a continent away (well he is in Wyoming as I type tonight).

Even I am separated from my wife and daughter during the week as they stay in a home, while I putter in the Bay Area (this is a choice that can be, and will need to be, remedied).

Yes, technology is making the world smaller, but that doesn't work as well for cousins who want to hug and play together.

We chase our careers and often lose our families.

As my niece would say, I miss my "Gills" tonight -- all of them, everywhere.

____________________________________________________________

So thankful for my brother--a constant source of familiarity--someone although may not live it--gets it.

Lately I've felt a bit lost and after reading this felt found.

Tuesday, October 5, 2004 10:46 AM CDT

What can one say about a husband and dear daddy like Dave? I'm humbled by his care not only for the kids but for me as well.

With both kids under the weather--Olivia having eaten like a typical kid over the last weekend and prior too--no stool out on Sunday made for a hard HOOKED up Monday--hooked up to her G and J bags and her 1/2 Liter of fluids, but we managed in the morning to hit the monthly activity with our homeschool group to bowl, skate and basketball. We skate first and both had shown more confidence and Olivia wearing a shirt and pant outfit was very self conscience of her tubies and pouch. Her smile--etched into my heart--proclaiming that she WILL do it despite. She began to desire water and with that made bowling more of a vomiting time--while David bowled. But she did play basketball with me prior but I could see her wilting fast.

David's asthma has been triggered and made for one tired looking boy yesterday, but we pressed on and both had GOOD schooling time. They both worked in sketchbooks as well!

Yesterday was not a good place for me--I get tend to get lulled by good days and when a hard one comes along--ALL the fears of future surface.

Thus--Daddy-O steps up to the plate.

Trying to allow GOD to work in my heart--praying almost continuously for patience and His mercy.

We have part of my dad's zoo here. Mordy his bird--a dear bird and then kitties all sequestered to the basement or garage due to asthmatic boy. But I awoke in the middle of the night with kid worship songs pounding my heart and I asked--why am I so fearful?

With my Dad on his way to Montana--his love--something that I know he has put on the sideline for far too long due to our needing him--I became paralyzed thinking WHAT IF--What IF Olivia needed to hospitalized (July's trip still fresh)where would David go? Who? I grew sick to my stomach then continued down the spiral to WHAT IF Olivia had to have a transplant down the road? What would happen to David?

This comes with thoughts of my dear Heidi's Sean and the beginning of his journey of hope--and with Hope's Natalie still struggling. How these two mothers care for their "OTHER" children--

As I type--David and Olivia are playing with David's new train set from his FAMILY in ST LOUIS and with Olivia's small animals. It is an amazing time.

The other day they had over 30 of them in a line starting for Olivia's room and slowly moved each one keeping them in the curved line marching them one by one to the living room. It was such a feat. So thankful Dave saw it too.

Entertaining themselves--for time endless--God protect them.

Wednesday, September 29, 2004 7:08 AM CDT

A Daddy-O Hijacked Journal Entry: What a trip this has been. I now have a fuller understanding of Livvy�s care and how well Sheila does it. It has been just beating me up. Of course the fact that Mom and Dad�s house is two stories and the bedrooms are upstairs has meant lots of running up and down during her care without the usual flow due to the different surroundings......Whew. It will be nice to be home and be able to do our routine.

Livvy has done well on the trip under my care, although if any of my healthcare failures manifest, I am sure it would take a couple of days to show. We did have one anxious moment Mon. Night. Hooking her up I got the one line to flush, although it was hard, the second line (on the same Y-loop) wouldn�t. I couldn�t understand it and without extra supplies, I started to stress. I am the mechanic/engineer, physical-mechanical things don�t usually confuse me. Livvy fell fast asleep (I mean like hard down.) I wondered, Oh my have I done something really stupid like sent a big air bubble into her line and knocking her unconscious....no-no-no. Nothing�s really hooked up yet and running.....

Thinking it was her arm position, I moved her arm around, no help. Got Sheila on the phone and we were started towards unhooking things and flushing from the primary (first) cap. My Mom is off to the side, watching, trying to be of help if the opportunity arises. I look at O as I am moving her arm around to different positions, it has to be the arm. Then I realize it. Her head has fallen down onto her chest, right underneath where the C-line comes across under her chin. �Mom, move her head!� -I push through the syringe - no resistence-YEA. ..............Just hope with all that opening and reconnecting stuff I didn�t touch anything. The adrenaline rush exhausted me, although I didn�t fall asleep till much much later. I woke up 3-4 hours later. My subconscious replaying the tape in my head. I see my hand on the tachni-color BIG SCREEN, jamming two open IV line connections together, slipping and running the one end into my gloved hand. I talked to Jesus, hope it didn�t really happen and went back to sleep.
...........................................
Last night Livvy asks me, �Is everyone a 100?� She has those big, innocent brown eyes focused on me.
�Do you mean,. Does everyone get to be a 100 years old?� ((My Dad is 80)).
�Yes� she says. ......................... �No� I reply.,�very few make it that old.�
�Are you going to get to 100.� ......�Yes, I am going to try very hard to and I think I will.�
�When you get to 100 do you go heaven?�
�No, Honey, the way you get to heaven doesn�t have anything to do with how old you get. All you need is to love Jesus.�...............�Oh� she says.
�Who is going to die first?� ..................�Probably me,� I say, �because I am the oldest.�
She picks up the logic immediately, �then Mommy, then David, THEN me.�
�Yep, that�s the way it will probably work.� �But, that�s okay because we�ll go to heaven and we�ll be together again, so who dies first doesn�t really matter.�
She is beaming............

Oh My Dear Sweet Babydoll. If only it would work out so.

So in the meantime, we'll focus on that, �so we�ll all be together again� part.

May God bless us all, and prayers for our friends who are sick or in need. Love you all.
Daddy-O

Monday, September 27, 2004 12:38 AM CDT

Mommy WHO?

The kids (and Dave too--I'm sure--NOT to mention ALL of the Saint Louis family) are having a blast!

When I talked this morning Dave said Grandma was making Olivia her second egg--that rascal! I know she is enjoying the variety of food and all the attention.

Aunt Janice and Grandma took David and Olivia to Toys R Us and they were busy building trains. (THANK YOU JAN and LYNN!) David had a birthday of sorts there.

So thankful for this time--Sunday I did ABSOLUTELY NOTHING but read here and there snoozed--talked to a couple people I've not in a LONG time and watched some mindless TV.

Today a different story as I'm making dinner for Cheryl my neighborfriend I've not connected truly for too long; we both are excited about a dinner and I'll do her hair.

Gardening--looking at all the flowers which are hanging on despite autumn is here and all my mums ready to burst with their fall energy. I have to say the mum I received for Easter my first living her from Jennifer Harker is my favorite by far. HUGE.

Good things here--missing my family to a degree, kept thinking I had to get out TPN last night or that I heard a beep last night--alas--maybe it was that Dave was?

Sweet man--Thank you for doing this.

Saturday, September 25, 2004 6:44 PM CDT

One's own birthday.

Both so excited about their visit to their family in Saint Louis--Dave and I both thought today would be better than an early EARLY start tomorrow. After David's soccer game would be better. Didn't David have to wait? I shall wait as well.

Papa came to watch with Jordie an added blessing for us all for after the soccer game Papa sitting on my beautiful birthday bench David and Jordie had their own major league baseball game with Dad giving them "rules" of the game and Olivia literally dragging out the bags to expedite the departure.

In the frenzy I forgot to take my wallet out of the backpack which doubles as my purse and hold all of Olivia's necessary supplies. It will change my priorities but all is well.

David showed such IMPROVEMENT. I heard even a few DAVID cheers--he had more "touches" with the ball today than ever. He was called to do THREE side line throws. It was good to have my Dad there--a retired elementary school teacher who also coached my brother's soccer team. Having my Dad there is always soothing. We DeKolds carry a blanket with us which enabled Olivia to crawl all over Papa and Daddy during the game. She wearing one of those baby headbands I always hate to see on newborns, but boy--she wore it as an Indian chief's daughter today. Dad said she looked like a doctor. Yes. My doctor of sorts.

David is growing up--Heidi warned me that he will one day no longer have that look--and it has happened along with his voice--it all seemed to take place after his tooth came out. And with NO permission from his mother!

Called to see how my family was faring on their journey. David quick to say they were in Illinois--and had he placed the sticker on Illinios and MO on his U.S.A. map? Of course. And Olivia tells me that they had JUST passed Vernon Manor. Tears. Sweet child--that is in Cincinnati--a hotel in which we stay for your clinics and stays. Mt. Vernon is where you've driven through--sweet girl.

What a great father my children have. What a great husband I have--so nurturing and caring--giving. How I love you.

And how I love my supportive TPN friends and their insight and STRENGTH.

And a God--even though--still loves me.

Today I'm one past forty.

Thursday, September 23, 2004 6:48 PM CDT

Olivia seems to be in a pseudo flare--needing extra fluids, gagging at the smell of food or tasting anything. Doesn't bode well for Mommy nor Daddy--even David. Yesterday my head pounding found myself sinking fast as I thought about the what ifs in the future surrounding this young girl.

But today although she's eaten nothing and has drunk way too much water only to have it drained back out into her 2L bag being drug behind her and at times not needing it--she is looking good even without a nap.

Off to the library to return books and make copies for ART day tomorrow here--something (praying) I've wanted to do for some time and took the plunge. Teaching art to homeschooled kiddos and it seems there was a need within our homeschool group! We shall see. But the library as always proved to be a good time with Olivia dressing the felt kittens and David helping with the copies--math lessons.

Off to the music store to pick up my guitar with new strings, but we parked in front of "ART STORE" and had to step in--there an artist man gave us a short tour of his gallery and gave the kids each toys from a box as we discussed the Fine Arts and making a living.

Good day--although I collasped after all the other endless errands and too much pizza at Pizza King.

Soccer practice for David while Olivia and watched on and Daddy came--taking David to dinner.

AWANA last night was precious. I love helping with the Cubbies. The music time was absolutely priceless--they are really eager to learn new songs and are easily captivated.

One of the leaders told me that one of her twin girls asked THE question--IF God is...then WHY is Olivia? Gulp.

All I could say is THANK YOU GOD for sending such little girls to befriend Olivia--such depth from a 4 year old.

Sunday Dave and the kiddos will skip on over to St Louis for a much needed visit with Dave's family and I shall stay at home for some HOME alone time--regrouping MOM time and FINDING SHEILA time.

Its all good.

Monday, September 20, 2004 1:11 PM CDT

David's cake completed him. He had missed out on his birthday activity and cake in July when Olivia was sick. Daddy took him miniture golfing and the cake this past weekend now--I can have my Grater's cake (that David slipped up and told me--although Daddy claims he had just mentioned it--but NOW I'm holding them to it) knowing David had his cake. Blowing out the candles several times we did. Singing each time.

I am resolved to bake more cakes.

The kids had a blast in their world again yesterday after church and lunch. They love when we mow. I didn't realize that they were rolling in the CUT GRASS AND LEAVES! David did NOT have a flare UP! Amazing! They had a blast.

Olivia and I discussing the White Witch from Narnia, how she is deceiving Edmund into thinking she is THE QUEEN of NARNIA. Computing it as always and spitting it out during table school--explaining to David that the LION is a TYPE of JESUS! Oh my! That girl--a literature lover for sure.

David is such a great brother and friend.

Saturday, September 18, 2004 5:33 PM CDT

"What should we do?"

Our evening flow has been blessed. Dave reading _The Lion Witch and Wardrobe_ to the kids while I prepare TPN in the kitchen listening to music which soothes my soul.

Last night Olivia was sleeping in the crook or her father's arm when I came carrying her TPN and lipids with David on the other side still awake.

Dave and I discussed the fact that maybe Olivia needed a different formula. David piped in with "Yeahhhhhh--she has a tummy ache the next day after Jfeeds."

"What are we gonna do?"

I felt like we were all under cover trying to figure out the message before us. David seriously involved.

A cake has been baked in his honor.

David-boy will have his birthday cake with icing--tonight.

Praise be to the King of Kings.

Thursday, September 16, 2004 2:22 PM CDT

Quick trip to Peds checking on David's asthma meds and Olivia's weight and urine! ALL IS WELL!

As we waited for Dr. R. the kids went into a rather elaborate story about iguana and hummingbird. After a few minutes I just sat back and watched the plot to unfold. I could hear bits from what we've been learning.

Off to lunch then to a music store to get guitar and my brother's (Dad's too!) clarinet ready for me to explore. We popped into a pet store and saw more animals.

David was a math machine yesterday and Olivia did a weaving with paper. More her speed and she loved the over and under--over and under; easier.

Last night's AWANA was wild! Tons of CUBBIES everywhere! Olivia's dear little friends (twin girls) protecting her. What darling girls they are--when they play train Olivia is ALWAYS between them. Sweet spirits. Hoping Olivia will continue to be open to their love and friendship.

Talked with Hope--Natalie slowly is progressing--prayers continuing.

Tuesday, September 14, 2004 6:07 PM CDT

Full swing of home learning for David Monday but Olivia was a bit off--draining and do believe an intestinal obstruction as drainage out the G-Tube was more like stool. But she clicked into place many times throughout the day.

After lunch it was to be reading time, but brought out the mini looms in which David made a cool design with both the warp and weft. He stuck to it and really enjoyed it; Olivia is very much a fine motor kind of girl. But the actual weaving end of it was too hard and only added 3, but realizes it will be an ongoing project. Hoping Dave and the kids will make looms for us all--larger ones. I love to weave.

Worked out both kids with soccer in the evening--Olivia will throw her whole body on the ball if she thinks we are going to kick it away. David is so tender playing against her. He and I ran the Lee Drive and both kiddos riding bikes and made a obstacle course with cones. They both did very well!

I am amazed at Olivia's muscles in her legs--almost thicker than David's.

Today's trip to the zoo was peaceful. Hardly anyone there and many of the animals became our friends. We spent a good deal of time in the petting zoo with the donkeys and goats, but I loved to watch the African tortoise.

We met Elise there and road the train and the carousel--a favorite around here.

Over to Elise's dorm to meet all her friends and see her room.

Neat field trip(s).

Olivia after eating lunch went down hill fast with the pukies, but bounced back and rose to the occasions presented. I'm so proud of them both.

At lunch we sat in the back all alone acting out different animals--Olivia always allowing ME to win (guess) her animal which irriates David so--but I casually remarked to them both--What a great day--

David's response--

Olivia is having a good day, Mama.

Yes.

Daddy is away on business and both are settled into their bed nests--

Yes, a great day.

Sunday, September 12, 2004 4:28 PM CDT

Grandma is gone.

Olivia and I took a MUCH needed nap--it seems I've not been sleeping well for too long and Olivia's gotten up TOO early the last few days as well. But I feel rested for the first time in a while. WHEW!

Dave being the patient kind soul of a man that he is has helped me get through this bump graciously and has taken David to PUTT-PUTT and even bring home my most favorite ice cream. Allowing for Olivia and I to have just a quiet Sunday alone. First Olivia watching Lion King with her hand resting on my chest then falling asleep right afterwards. I slept through the movie!

Special loving thanks to Grandpa Jerry--you give so much to us.

Saturday, September 11, 2004 9:09 PM CDT

Dreams.

With it being Grandma's last night here--our farewell--birthday dinner for Grandma Lodgie with special guest, Papa Jerry--we are all a bit blue, but yet so utterly thankful for the times we have together.

Dreaming of times to come.

David taking orders for frozen bananas or frozen grapes. (Thanks Miss Donna for the suggestion last week!)

Olivia tasting everything under the sun.
(Thanks to God for allowing her the ability.)

I shall miss my Mom--she is the absolute best.

Dave--I love you.

I adore you--David and Olivia.

My waiters--waitresses--so fun to watch you interact and play amongst us.

Olivia writing on a tablet--I love you all in my family.

Precious.

Praying for protection of their tender hearts.

David's soccer today made me realize that we are in a different world. Most on his team having played more than 2 years ALREADY!? When does this happen? But--even though my mild mannered boy stood when he should have run--I REJOICE in how GOD created him.

Special note: On our way off the field we saw a chess club buddy--an older boy--who said "HI" to David by name. Kind of gave me that extra hug from God I needed.

Crickets chirping.

Friday, September 10, 2004 6:47 PM CDT

Olivia continues to have great days. She is an eating machine--with her constant cheese roll-up order which she can easily fill on her own--she is growing with TPN and cheese I do believe. Although when we give her any amount--like 14cc of formula into her J-tube over several hours she complains of a bad tummy. But after eating half of a pancake and bacon--she is raring to go!

David is now in full swing of helping--carrying in the lighter groceries we were able to get the goods in the house faster. Kids went immediately into their imagination play and I laid down for a quick cat nap.

GRANDPA JERRRRY IS HERE! I could hear the running and the joy in the children then David comes in to tell me that Olivia's tubes popped out. Both. I could not find my glasses blind that I am without them it is imperative that I have them for the simpliest of task even for the relatively piece of cake slipping another tube into my daughter's many stomas.

Glasses found--Grandma coming in carrying a syringe saying Olivia had instructed her to get syringe.

J Tube was a cinch; G Tube on the other hand gave us fits. Olivia's tensing in her frustration and pain and I was incredulous this was actually happening--then I was back on the phone with Hope some several weeks before when she said she could not get Natalie's J Tube back in--I could hear Natalie's voice again.

How much such children endure!

Finally the G Tube POPPED into her stoma and Olivia and embracing, Grandma collapsed next to Olivia on the floor and David--relieved there was not a hospital trip during this day.

Tomorrow is David's first soccer game--he'll have quite a ROOTING section with Grandma AND Grandpa, Daddy, Mommy and OLIVIA!

Special thanks to those who have covered me with their loving care through prayer.

Thursday, September 9, 2004 8:45 AM CDT

Our Wednesday night is packed full.

Next week will be entirely different with my Mom being gathered by Jerry who should be here TOMORROW! He is driving in from California and will stay a few nights before heading on to their next destination. We hope to have a DEKOLD DECK DINNER celebrating both Mom and Jerry Saturday night. The kids and I shopped the other day for Grandma's birthday which is end of this month.

So next Wednesday the kiddos will have to come to orchestra practice before AWANA, which will be a great time for David to review his verses. He received his HIKER handbook last night--so utterly excited and can READ the verses this year! What a wonderful way to read--through God's Word!

The sign language class is a riot. The teacher--entertainer is so fun. He is deaf and has really opened the world of signing for me. Mom sat in with me as well. I leave out to lead the CUBBIE's WORSHIP (Olivia's group).

When I ran in the Cubbie group was divided into three rooms, Olivia was working amongst her little friends on her craft. She has FRIENDS! She claims she ALWAYS had these friends. Time for music and she plopped down right in front and I felt her pouch--RAN to the bathroom to fill a very FULL pouch (mainly AIR).

Oh--It was so much fun to be in front of a sea of 3 and 4 year olds. I so love to work with children. All the songs except one or two the children did not know, but my little song bird sang right along with me. Big brown eyes and two braids to her shoulders and smiling as she sang. Tears.
Playing my flute--singing--whispering--keeping their attention for a good 20 or so minutes will be such fun! David slid in next to me with his NEW book--beaming--and Olivia's girls wanted to immediately check OUT the big brother's AWANA book.

Keeping it all into a new perspective. Olivia IS doing relatively well. She isn't even taking naps and surviving the day albeit some days she can be a bit grumpy.

Hope's Natalie is fighting hard. I feel so blessed to have Hope as a friend; she has taught me so much. She is exhausted and her Bostonian accent so thick and seemed to almost mumble last night. She made a joke on herself and said--you are supposed to laugh that was funny--I told her that the delivery was horrible and then we BOTH laughed. Amazing woman.

Prayers appreciated for Natalie, Sam and Kyle. Three children all with similiar issues--struggling.

Prayer!

Thanks to you who have answered countless questions and have been so kind and supportive to my requests for prayer.

God KNOWS!

www.caringbridge.org/ma/natalie
www.caringbridge.org/oh/kyle
www.caringbridge.org/wi/zachsam

Tuesday, September 7, 2004 4:52 PM CDT

After a full weekend working at Papa's and about the home here--we are ALL in a LOW energy mode.

Olivia has been looking so great and EATING (good? bad?) and with it seeing digestion in her pouch. So last night I gave her J-feeds (formula into her J-tube). Today was a my tummy hurts, but still eating day with her color off into the gray tones. Extra fluids and some down time and hoping she bounces back for tomorrow's AWANA night.

Hoping that eating (at least) will cover her liver from any harm from TPN rather than what we had hoped enteral (formula into her J-tube)would do.

Going to an early hook-up and early bedtime for EVERYONE here.

****************************************************

Hope's Natalie continues to struggle, she was extubated but on a bi-pap machine and slow to "wake-up"--praying that Wednesday is a turn around day for Natalie.

Sunday, September 5, 2004 12:25 AM CDT

Friday Olivia had one of those spit and sputtering type days, but by evening was almost back to par.

Saturday was glorious at Papa's.

Friday night I got Chicken Pen Building 101 from Professor Papa Virg which allowed me to assist and train Dave on Saturday. Since Dave is tall in comparison to my side of the family he was able to reach and do things more easily. The kids along side helping and learning.

David and I ran a relay race back to the pond of course winning an Olympic Gold while Olivia hung back with Grandma.

Dave brought out Goldie (the lone hen) when he came out Friday and she enjoyed the day scratching and receiving the spa treatment (dust bath) with the other hens. We brought back a buddy for her--a red hen like her--aptly named "Patchie" due to her loss of feathers thanks to the barnyard roosters.

Olivia was leaking out Jtube having lots loss out her G and J today so she is on fluids, but happy, grey but happy. I suspect a UTI. We shall see. I wish we had our own lab right here.

Friday night at Papa's Olivia named off all her professions to come while David pretended to write them down. Police officer and fire chief were tops on her list. Adding in ballerina and artist. David said a doctor and I asked what kind, maybe a Ped like Dr. N. or a GI like Dr. K. and he exclaimed a GI!

Tears.

David is thrilled with his chart of duties.

Not as much as I.

Friday, September 3, 2004 10:11 PM CDT

One of those long pukey kind of nights. Olivia drinking water and vomiting--alternating between the two acts.

But although she was still in that mode we continued with plans to Papa's house. Hoping to get his feathered animal pen all set.

Lots of leaking from the J-tube and just basic miserable belly, but after we got to Papa's and O rested for a bit she really snapped back.

Now Daddy is here with all of us and like it always is when we come to Papa's a sense of pioneering--back to basics--

On our way we FINAllY stopped in at Charlestown State Park and explored a wee bit. The playground there is great and the trail exhibited more wild flowers I'd ever seen.

Can't wait to get back there. Maybe alone, but Olivia insists on going as well. On a better day--yes.

Hoping to check in with Hope--Today was going to be a hard one for everyone. Praying.

Thursday, September 2, 2004 6:50 PM CDT

Our homeschooling group had a picture day at our church.

David and Olivia watched closely as the older children had their pictures taken. When it was time for our family's I asked photographer if he wanted the shortest like with previous families. He said it didn't matter, so I asked David to go first but he insisted on Olivia who popped onto the stool and as soon as her bottom hit flashed a somewhat anxious smile. So adorable. David's turn came and he beamed. Was able to get both together.

It is the small things in life.

Olivia is in dumping mode and tired due to it, but a good bath and early hook-up has her all in order.

While dressing changing she watched National Geographic's Spin in Deep Sea Animals. Listening to her reaction is priceless.

******************************************************

Natalie is fighting lung issues; still on the vent and exhibiting pain having the sedation reduced. Praying not only for Natalie, and wisdom for the doctors, but of course for the strength and fortitude for Hope.

Wednesday, September 1, 2004 9:50 PM CDT

Olivia is really showing interest to book--table learning which makes this time so much more challenging. Today I broke out the notebooks Elise had gotten long ago and each picked the color Elise had originally chosen each. Within it I hope to capture this "school" years growth through pictures, writings--Olivia on her return from AWANA exclaimed she wanted her journal to write about a BEAUTIFUL PRINCESS. Today they journaled about trees.

Mom dropped me off for orchestra then brought the kids back down later for AWANA. Olivia marched right in with no hesitation whatsoever. David of course is Mr. Sparkie USA so he was in his element--beaming sporting his vest. When I peeked in on him I saw he was turned around showing and explaining all his jewels and patches.

Tonight was VIP meeting for Cubbie parents. I took in a short blurb about Pseudo Obstruction and Olivia's capabilities. Since she has all the same leaders except a few I just quickly reviewed over things--mainly with Miss Lemon (Olivia shortened her name from Lemonade) and decided tonight might be a great time to explain about Olivia's concerns. So I asked if it was all right and Olivia said yes and that she did indeed want to show her tubes. So after introductions were made of the Leaders--I on my knees in front of 30+ Cubbies--began explaining. Didn't want to make too big of a deal, but did want to relieve Olivia's stress about hugs--and unwanted touches. It was so sweet and the kiddos were great. When I sat went back to my space on the floor a mother told me the first time she had seen Olivia she thought she was the prettiest little girl. Oh yes--tears, gulp and Olivia back into the sea of Cubbies and when marching to their next station didn't even look for me. WHO TOOK MY OLIVIA?

After changing a J-Pillow I ran over to my sign language class and there was immersed into the deaf culture.

Olivia did well. No pouch leaks, no J-Pillows, No vomiting she informed me on our way out. She was quick to tell me of all the food she ate and how Miss B. who has been praying for Olivia for well over a year now was gentle with her as they bounced the ball. We took a walk on our drive and she danced and fluttered like that beautiful princess she so wanted to create.

Monday, August 30, 2004 8:08 PM CDT

Our hearts and our home is in constant concern and prayer for Hope's Natalie. Natalie continues to fight with many struggles.

I remember when Olivia was in the hospital this last time and Hope and I were instant messaging one evening after Olivia had gone to sleep.

Natalie's J Tube popped out while she had been sleeping and the stoma was closing up so fast. I called Hope and got to hear Natalie's little voice--so precious and so heart wrenching to hear her cry. Later Natalie was concerned about how I felt about all of it. I had hoped to meet Hope and her children this August but it just was not to be.

The only thing Miss Natalie needs right now--is our prayers.

Sunday, August 29, 2004 2:43 PM CDT

Continued prayers needed for Natalie for the whole family--for any doctor or nurse touching her tiny body.

www.caringbridge.org/ma/natalie

Saturday, August 28, 2004 7:02 PM CDT

At Papa's the kids BOTH got baths. Olivia Tegredermed until there was ABSOLUTELY NO way water could touch her line or her anything. I put the neccesary pieces on then I let the kids put some on--part of the fun. As they play--in the tub I hear Olivia shriek--DAVID PULLED out my JTUBE. Upon entering David is curled obviously sorry and Olivia begins her drama 401--she has graduated over the years. Having to be careful--know the difference.

Finally after how many years living in this area we hit the Art in Speed Park. Hot and humid was still on the menu but when we mentioned an art show Olivia was all for it.

Dave had David at soccer so Olivia, Mom and I toured each mini gallery. Pulling out Responding to Art 101 from deep back of my mind--Olivia and I began to describe what the image was, what type of medium used, no interpretations.

The boys caught up with Olivia and me at the "playground" where there was a merry-go-round sort of thing in which all the kids were on--Olivia rode and at times jumped off to get the 'round going.

Mom sat in the shade listening to great Bluegrass.

Rain began right when the kids were at the top of the tall metal slide--Olivia froze and was afraid to come down.

Oh Olivia-JUST come on down.

David still with his soccer gear on--red cheeks--reminding me of the boys on my Dad's soccer team. It is although his legs run faster with his little cleats and guards.

Had to walk--even ran tonight--running for Natalie--fighting for my breath I prayed she would just stop bleeding.

Please Lord--Guide the doctors--Wrap your arms around Natalie's body--Help Hope to rest--Lord--WE CRY out to YOU.
HOLY is your NAME--Jesus--above all OTHER names.

JESUS.

Friday, August 27, 2004 1:31 PM CDT

Hot and humid Southern Indiana here at Papa's house with no air conditioning, just as it was on Morrow-Cozaddale after rolling up fencing and carrying metal posts to the barn I followed the edge of the corn field across the road to the border of the property.

Walking a new wilderness path without the children stopping by to see dead old goose which Olivia announced to Grandma and me yesterday after the viewing.

Looking for traces of the Spring flowers and spent heads when shaken their seeds ready to go back to the soil.

Grasshoppers and spiders heaps.

Last night two pouches, three wakeful beeps from pumps, two my tummy hurts and this morning I listened to Olivia whimper. But today it is all history. The night is such a different space in time. As I put on the second pouch Olivia plunged into her imagination inviting my participation.

"Mommy-let's pretend my stoma is a Queen" the tubies were her guards and the safety pin the King. After hre pouch was placed--she was finally crowned.

Coming in from my walk Olivia follows me into Papa's room asking to watch Jana Alayra. She sings and does signing to innovative--Jesus songs. Not religious songs, not even churchy songs, but JESUS songs.

Jesus Reigns
I will praise Him
Jesus reigns

I'll join the thunder

and tell of His wonder
That JESUS reigns.

And really for the first time Olivia is singing right along. Saying she LOVES this song! Or THAT song. But her favorite part is the last song where Jana sings to her daughters--and when Jana talks of loosing one of her daughters--tears. I remember seeing Jana at a convention for Children's Pastors when I was 9 months pregnant with Olivia and she (Jana) shared her story. How my heart sunk into my womb and wrapped around my baby within my body.

God! MASTER! KEEPER OF MY SOUL!

"I'll put ear plugs in Mama when Satan talks to me."

"Olivia when Mommy journals do you know what that means?"
"It means Mommy writes her thoughts out so someday you and David can know Mommy more. It is like Mommy is writing a book for David and you."

Ohhhhhhhhhhhhhh!

JESUS REIGNS!

Thursday, August 26, 2004 9:33 PM CDT

Smiles--

Kids LOVE Papa's house. MUD and chickens.

"It's so nice to have so much room" Olivia notices.

Realized that today Olivia ate and ate--nibbled and nibbled and didn't THROW UP!

She is incredible with her stories.

Wednesday, August 25, 2004 8:55 PM CDT

If I looked back a year from now would I find the same trembling in my heart?

Tonight was the week before AWANA is to start. David elated that there was a "Welcome Back Party"--Olivia easily dissuaded, with Grandma promises which are always firm and true. Not knowing what this night would entail for a Cubbie girl she opted to stay home with Grandma.

David for one hour and fifteen minutes listened to a hodge-podge of musicians practice until it was his time--AWANA party.

David so eager--kind--sweet--so UNaffected by this world which will soon tell him how to talk--how to dress--how to--be. It pains me. With his baggy shorts and VBS shirt and black sneakers with no socks--his preference--he walks into the gymnasium which from my perspective looked like a stadium. David stood in the midst standing like a pilar with no fear. Peaking from the window at my son--completely amazed at his bravery. We speak of Olivia's bravery--Yes--Uncle--I see now what you were saying.

He catches my spying on his moment--frozen.

Entering and crumbling down the wall to face his face--he whispers, "Mama--you go ahead and go to worship." "Sure?"

Whistle and balls are thrown out for the frenzy and David still the sprout gobbled a basketball and from that same window I see his dribbling.

All seems so simple but within it so complex.

Off to worship--tears finally warming not only my cheeks but all down my neck until I realized my heart parched ached set some things straight. Allowing the subtle anger about the pain and sickness surrounding my family to wedge itself into the spaces which only could be softened by God's love--promises--mercy.

That same wall held me again on my return for my boy, but this time our smiles connected and as our bodies crashed into a huge hug--happiness.

Tuesday, August 24, 2004 4:43 PM CDT

I received a forward today which was beautifully written; I don't usually read forwarded emails--but given who sent it--I read each word.

The writer claiming he had changed his perspective on what a star is--not the Hollywood "star" memorizing lines being paid oodles of money--he stated to him the real stars of this modern age are the American soldiers; they own that title.

Now I'll not get political--not one little bit--but I appreciate the fact that my nephew is now in a place where danger is real. I'll label him a star or a hero which ever he desires.

But my commentary will lie to some pretty special Moms. As I read this gentleman's words I immediately thought of many women I know--I __really__ know and when honored with my words through compliments they'll turn it around to me--or say--"It is what a mother does."

Not all mothers do and not all mothers are called to such places in which they see their child in pain with pain medications, or where their skin turns yellow from liver disease, or where their child vomits daily-over and over again--where their lab results are dangerously frightening as if they too are on the firing line--where their body bleeds--yes--the children are amazing creatures created for God's pleasure for God's purpose and sometimes I gulp down the tears and the thought of all that.

Dave just called--Mom and Auntie Midge took David and Olivia down for David's soccer practice. Asking me--what was the matter--I had swallowed an update email from a Mother. It was stuck in my throat.

Olivia is pukey again. Why do I say again? She is most days and some days she isn't. We tried Jfeeds last night and today she is blown up. 800ml of fluids to try and get her caught up. No--she isn't in dire straits. She announced today she had to vomit--I ran to the family bedroom to get a pan as they were stored there--and as I come running back--Olivia puffed out cheeks and David running a commentary; "AND SHE MAKES IT JUST IN TIME."

Yes. Just in time.

I'm not bitter--I'm not even sad--

Listening to an incredible song--"A Poor Man's House"

"Mama says--God tends to every skinny sheep--so count your ribs--say your prayers and go to sleep."

Sick Girl's House? No--

Olivia's house.

I hate that a little boy who ran and played soccer last year is now learning now to walk; that a little girl is yet in the hospital again and with a possible surgery and her little body tired. Oh there are more.

Monday, August 23, 2004 4:03 PM CDT

Started this day with running and soccer kicking. Olivia melted down for what seemed like hours because David had put on "her" shinguardsockthings. But David and I had a great session. Good exercise! Grandma with her CD walkman doing her walking too! FUN!

Reviewing odd and even numbers--making a chart--while Olivia glued colors and announced "we are HOMESCHOOLINGLEARNING" at which point David smiled his sweet smile and nodded. Reviewed coinage as well--he loves numbers.

Having found the two missing books I grabbed the opportunity to escape to the library alone. Sorted through CDs of musicals and picked out four Nat'l Park videos. Then up took time to check out some SHEILA books which always feeds my soul.

On my return the rest of the National Geographic videos arrived which I'm saving for my rainy day--reward kind of moments. (Thanks HEIDI for introducing us!)

Olivia needed a new pouch and while I put it on she listened to a book on tape about "Air is All Around Us" then one about "Leaves Change Colors". She had to comment on the red leaves she sees back in Papa's woods. And while we were looking at the shapes of leaves she identified the OAK! This week we'll start our leave collection while at Papa's.

A sweet CD I borrowed last week from the library, by Ella Jenkins has several delightful songs but one--"Many Pretty Trees All Around the World" names off several trees--Oak, Elm, Pine, Eucalyptus--and "Please is a Pleasant Expression"
and then sings different pleases in different languages! Fun. I played this as an album when I worked with the Preschoolers at Catherine Booth--in Cincinnati.

****************************************

Dr. K's clinical update letter which he sends out to Olivia's PED and us came in today's mail. I try to always stop in that moment sit and read and reread. Yes, she has lost weight but looks good and mentioned her quality of life is more than good. He said that her clinical state had returned after the UTI episode.

I really work very hard to live life in the now. And to hear him say that is reassuring for the now.

Sunday, August 22, 2004 9:24 AM CDT

Mom and I had our day Saturday. Shopping. How many times I've been by myself and hear other women call to their mothers. What fun to have Mom there with me--our giggling as two best girl friends do. So blessed to STILL have my mom!

Dave had the kids all day literally!

But the day started with David's FIRST soccer practice. We got the call about practice on Friday night--I had written it off since we had missed the evaluation which also doubled as a parent meeting. I was heartbroken as I knew David was looking forward, but was ready to replace my mistake with something equally fun. The coaches wife called and I knew it was a God thing as dear people they are reassuring that it was all right. So Daddy and Grandma took him to practice Saturday morning chilly that it was while Olivia was still infusing. Both Dave and Mom reported that David stood back watching--soaking it all and seemed to enjoy although too polite on the field!

Hoping that soccer doesn't displace chess!

Olivia looks GREAT! She is enjoying oral feeding. Lots of tofu, ham, eggs, cheese puffs, refried beans, banana. I want her to eat--it can get crazy 'round here at meal time. At times I feel like a short order cook!

I love Olivia's giggles.

David is lying in the grass outside with his soccer ball.

Daddy off to church and we'll get his supplies for soccer then have home church. One of my most favorite things to do with my kiddos.

Glorious SUNDAY!

Thursday, August 19, 2004 3:57 PM CDT

The day finally has come--and the part David has dreaded for over a year is finished.
Today David was evaluated as a Kinderlearner! He did so well and enjoyed the vision and hearing tests. It was the immunizations which just about sent ALL of us over the edge but he bounced quickly back although I think Grandma's and Mommy's hearts still are a bit pricked.

Before his PED visit I met with the asthma--allergy nurse and received TONS of information about David's care concerning asthma. He did so well with the testing and surprised everyone how he would follow directions with the meter. I'm so numb by the days activities I can't even remember all the terminology right now. Funny-the nurse mentioned how I need to be Nancy Drew in figuring out what triggers David. Boy--doesn't THAT sound familiar. I've been a Drew understudy now for almost 2.5 years concerning Olivia's care. After David did his breathing test and came back in--prior to his Kindervisit--he said with almost tears--
I want to leave. I've never felt so soft for my children's feelings as I have in the last couple of months. I think for so long in doctors offices I've tried to maintain a poker face during the tough stuff that to see that David was about to break just about broke me.

Olivia kissed him as we waited for the "shots". McDonalds for him afterwards was a given.

We then hustled down to the library where CHESS group was meeting.

What a sigh of relief to have such a great experience with a group of kids ranging from 5.5--11! David actually won TWO games! I got some WELL needed HOMESCHOOLING MOM face time while he played and Olivia met a new friend-Rachel--11 yr.--who took it upon herself to play with Olivia. It was nice to be in a space where I didn't not have to justify why we do what we have chosen to do. Safe and sound.

Tonight is a monthly meeting for homeschoolers in this area--meeting at the church we attend--which makes it VERY accessible. But by what I hear from Olivia upstairs looks like Grandma will might stay home with the kids. Too big of a day to take them out tonight.

On the Olivia medical front--she was pukey several times today. If she wakes up or vomits anymore today-tonight or morning I'll take a sample of urine down. Vomiting seems to be one of her first symptoms of UTI. The PED docs all thought she looked better--I think she looks too skinny--pale and running about 75f her potential.

Of course with the weekend approaching. . . .

Wednesday, August 18, 2004 7:38 PM CDT

A game of chess a night seems to make David such a happy boy. He has beat me twice now with some coaching but still he has totally grasped the concept and is no longer fearful of pushing the other "players" into the game.

Olivia is at that stage where she doesn't want to be too structured but wants to ATTACH herself to me.

Since today Grandma took David for a hair cut and a lesson at the bank; Olivia and I cozied up for some of "Born Free". Olivia knew right away that the "Ranger" was going to bring back the lion cubs. To listen to her "ah" and "oooh" throughout the beginning stages was priceless. We'll save the rest of the movie for another time. Not into TOO much TV but for some reason today was a laid back lazy day-and the movie just fit nicely. Olivia really takes it all in and spits it back out-like tonight with Daddy.

Gave her 500ml of fluids today as well as 75ml of Jfeeds. She looks good, but yet, I guess I do not take anything for granted. Still dumping a lot of stool-not sure why that is, praying that Zelnorm has not lost its affect-or is it effective-effectiveness.

Made it to the first orchestra practice since summer. It was nice to see all the folks; I have missed them. Miss Kacie was there! I slipped into Worship and caught the last few songs. I realized I had not been in coorporate worship like that in TOO long of a time. Then heard our Pastor share what God's given him. Keeping it all upon God-Jesus-not him. His humility is a blessing.

I've struggled all summer long where do "I" fit in God's church. There have been a couple of you who have really uplifted and encouraged me. One thing Pastor Scott mentioned tonight was how we ALL are ministers (yes-heard THAT before) and I sometimes get caught into what I should be doing in regards to WHAT the "church" wants or needs from me-or my family. But I felt an overwhelming peace flow when he talked more about Jesus and not committees-that "WE" can touch people all throughout our day-walk-journey. I'm not doing it justice, but it gave me hope.

Tuesday, August 17, 2004 7:05 PM CDT

Interesting day-at least from my perspective.

Seeing my husband lying on a bed and a nurse putting an IV into his hand-seems like nothing in the whole scheme of things. I was accused of taking it too lightly, but when I think of what Olivia has been through-David too-all of us seeing how she has dealt with three ostomies being placed AT once into her body, a central line and all the CARE it takes to keep it all working-to keep her alive-

It is all a matter of perspective.

Dave's colonoscopy went fine-nothing concerning which made the day's ending all the nicer.

Grandma stayed with the kids continuing David's learning on time keeping and Olivia was surrounded with all her little animals on our return.

Olivia and I slipped down the hill to stock up on soil. I'm attached to Rich Mullins' CD that Aunt Becca gave (loaned) me a while back. His songs are such love songs to THE Savior. I asked Olivia who she thought was the Deliverer-"Jesus". She held her yellow mum on her lap on the way home. Peeking at her at the stop sign I have the image of half of her face-brown eye looking with the mum covering the rest. Oh Olivia. You are my hero. I told her that.

Her Jtube leaked a lot. We went through a lot of everything until I could get Gbag onto Jtube, there she drained about 500cc in just the walk into the store. She commented that she didn't want her tubes to show. People will say there is that silly girl letting her tubes show.

Time to check the water level in the balloon.

As I type David is brushing his teeth-60 seconds!

Olivia is enthralled with one of the many books Grandma has read to her this night.

Daddy is puttering about picking up his toys-tools and I think to tomorrow-

No, I'll just think upon this day a bit more.

Monday, August 16, 2004 7:38 PM CDT

Relax and let it JUST happen.

Still not 100% comfortable in my own skin about teaching my own children. A fear creeps in when David doesn't do exactly WHAT I WANT-WHEN I WANT.

After I let go of my control issue of the moments; the day flew its own course.

David and I had completed his study on a basic leaf and math before Olivia had even awakened! We then went out to plant burning bushes digging a hole and needing 1/2 a bucket of water which went right along with what we were discussing in math. Then Olivia collected some nice blooms- too nice just let be wasted so we practiced making a plant press on the flowers; next week we'll start the leaf collection.

Of course I am thinking HOW many-numbers numbers numbers-then as I walked from the corner garden A.K.A. David's garden-it hit me-it isn't about HOW many at this point. Lets just see how many WE DO collect. David collects and presses, Olivia collects and presses. Let it GO!

Following their lead with my own direction-just like any other day, just a little more concentrated. That is all.

Grandma took Olivia to the grocery. What a treat to see Olivia with her own little cart-I napped and Daddy started her prep for colonoscopy-sorry Dave while David was putting something together.

Reading to the kids-Rat a TAT CAT card game (Thanks Tiffany! THE BEST CARD GAME!) baths and now Dave is completing the reading. Hope sent TONS of books and it feels like a library here; anxious to get there soon.

Olivia looks amazing. Clearly thinking-growing-bangs pulled over to the side-looking too much like a big girl.

Tomorrow I'll take Dave which will enable me to have some quiet time!

So thankful Grandma is BACK!

Sunday, August 15, 2004 8:03 PM CDT

A great way to start off my night away journey was to drive to Darla and stopping in at Matthew's cemetery. Mums are starting to bloom and all the trees and wildflowers completes the picture in my heart.

Lynn's Paradise Cafe was our next stop. I remember going there with Trisha years ago after she told ME about it. Pretty funny your friend from France tells YOU about a restaurant in your area. It is a place full of so much to see and the food excellent. It was fun to watch Darla taking it all into her and computing it all.

Shopping then finally heading over to Marsha's with Miss Dee as well. Nice to cut loose a bit and not have any responsibility. Was spoiled by such great food and BREAKFAST off the grill. Fun-Thank you--MARSHA!

Although I did call and got David on Dave's cell phone at which time sounding like the big guy telling me about all the things DADDY has bought. RACCOON trap.

Yes-Darla and I were greeted by a trapped coon. Dave and David drove him to a new home several miles away. We'll see.

Funny. But Dave has a better slant as it is his gig.

Tomorrow will be the official beginning day of school-but as I shared the other night-it isn't really "school" but more learning. Life is learning-we live life daily therefore we learn constantly whether at the table, or driving to the doctor or out in the yard or with a friend.

The kids' first science project is a little leaf booklet before pressing leaves and identifying them.

Math with reading, writing, spelling all mixed into it as well.

Olivia looks good but lots of green bile out her ileostomy. Strange, but she looks great.

Friday, August 13, 2004 8:16 AM CDT

The drive to Cincinnati wasn't nearly as forced as it has in the past, the clouds clearly in sculptural form laying out the perspective path on I-71.

We spent the early part of the trip talking and then brought out Jesus Christ Superstar. Mom brought a copy for me of the original cast-the one I listened to over and over as a kid and was even labeled a Jesus Freak by a teacher because I sat and sang many of the songs. It was interesting to share it with the kids and each part I would stop and explain the terminology being used. "What's the buzz tell me what's happenin'" sort of thing. We also have watched part of Godspell as well. Explaining to them that it is a writers point of view, music and lyrics, a rock opera.

David has been enjoying my David songs, where I sing out about him then he takes over as well, "David loves to see how things work" is his slant on himself. His speech is so different now, working into the boy stage and when given any time he is making something.

Dr. K. was raving over the Sprinkler photo of Olivia, claiming that I MUST have taken it since I am the "artist" in the family. Confessing it truly was Dave's photo.

Although little enteral feeds and little weight loss-17.2 now 16.6-but looks great and clearly felt well he opted to leave everything the same and give the green light for a 3 month clinic! I'll go to PEDS to get weight and will draw labs early October! WOW. It wasn't what I expected, but even her skin around her tubes was icing on the cake.

We spent the remaining time talking about quality of life.

With a lump in my throat I asked if they thought it possible for Olivia to see Yellowstone. Dr. K. turning to Nurse G-they both said OF COURSE-yes. I wanted to cry.

Within the path we are on right now-the uncertainy. The woe is me mentality can take over. I realized it is MY perception of what I THINK the kids NEED to see and do. My love for the West as I obtained from my Dad's willingness to step out and move us there triggered a long lasting love since my early childhood. As any parent-my desire is for David and Olivia to see and know this as well.

Yellowstone is not THE whole part of the West but a starting point as it was for my family. There is rich history there. As I shared that with Dr. K. I learned that he was building a second home in Montana, of course now, I'll be asking more.

Dr. K. mentioned a survey while at a conference. The children's quality of life overall is all right-they have their own coping skills-I mentioned Olivia prefered adults over children. He thought that was very normal and within range, then he said even the fathers had great quality of life-but it was the mothers who said quality of THEIR life was the pits. I fortunately have a husband although away for sometimes HUGE blocks of time, still will allow time for Sheila.

The drive home I dreamt about a Yellowstone trip.

Wednesday, August 11, 2004 8:00 PM CDT

Dried.

Full days seem to leave me dried and empty.

Tomorrow we'll go back to Cincinnati this time for clinic.

Wait-it must be the clinic blues.

Tuesday, August 10, 2004 9:48 AM CDT

It was so QUIET here yesterday!

David and the K'Nex is amazing. He put together a hot air ballon and little other things. Playing Chess with David is such a new experience for us both. He totally grasps it now and with his speech different from the lost tooth sounds so much older. Oh when did he grow so?

He sits by the big window nestled with all his pieces surrounding his body, like a bird in its nest. Olivia not too far away with voices of people; each in their own world, quietly learning and growing.

Today we will drive to Cincinnati to enjoy the Reds play. There we'll meet up with dear old friends and with it memories of my childhood all around. I love exposing my children to the sweetness of my past and exploring all the new things of our life now.

Praying for creativity in the upcoming months for school. It seemed so much easier when I had a classroom full of students, time was set apart. Keeping a notebook of lists, ideas, goals, David is excited and yet curious about the kids who go to "school".

Miss Goldie spends her nights with Cadbury Bunny. In the morning she CLUCKS loudly "TIME FOR MY HEN PEN" and there she spends her day alone, but she did lay an egg yesterday so she is working!

A little boy from TPNsupport group was found today. He had fallen and has been "asleep" for days. Today he responded in ways which come only from the One who loves and created him to be. Tears flowing down my cheek for his parents-joy.

Monday, August 9, 2004 7:36 AM CDT

David lost his first tooth. Uncle Bill suggested .10, Grandma . 25, I said .50 and well, Daddy prevailed with a dollar coin.

With this loss of a tooth I almost literally heard or felt a thread being cut. His voice is different at times and when I compliment him I get "Oh MOM" but as the night approaches I hear "Mama" again and if I snuggle into bed with him he is close. Having lost the tooth so close to his birthday makes the jump from 5 to 6 all the more apparent. There is an amount of joy in it all, but also realization he is not getting younger but older. As all are?

I gave him K'Nex for his birthday-the big container full-helicopter, camera, little jet and last night he put together an airplane almost the size of him. He worked while the rest of us sat out on the deck.

Later he put on Olivia's purple ballet costume and Olivia followed with her "lavender" and a performance was. David as "Purple Guy" and Olivia "Lavender". David wrote tickets:

B P A L

Ballet

Purple Guy

AND

Lavender.

Olivia survived yet another day without naps and replacement fluids. I will not take this as stone that she is outgrowing naps, but I am pleased that she seems to be working without the need of additional fluids. We have tried to restart her enteral feeds (Jtube) but find the next day she is a bit distended again. Her belly is flat and her intake of food far greater than it has been in the recent months of good season.

There is no clear cut plan on HOW to care for Olivia.

She as well seems to have had a growth spurt. A grandma coming, a transport ride, hospital stay, an uncle visit, a lot happening in her world but still I think she is the most balanced of us all.

How does that happen?

So tomorrow is my Dad's birthday and we have plans to Cincinnati-not for clinic but for a REDS game. TPN hook-up will be a little tricky but I feel UP for it. I refuse to get stuck in the fear place right now she IS doing relatively well.

Clinic on Thursday. It will not be a clear cut Olivia is doing so well type of clinic, but what in the WORLD happened. I no longer dread clinic days, but almost desire that contact with her doctor and nurse. Almost like going to the womb-almost safety-security-to be with people who know what my daughter has and doesn't question or try to come up with weird solutions. Sometimes it is just their listening to my concerns and validating all the way. Realizing there MAY be NO solution is almost a solution in itself.

Dave awoke me at 1:30AM. Felt like he was talking riddles and when I finally understood it was that Miss Sweetie-the prettiest of the two hens had been taken by a raccoon. I've yet to inspect the pen to see HOW this creature confiscated this feathered friend. Will be interesting to see how David and Olivia handle it and what SOLUTION will come.

Sunday, August 8, 2004 2:57 PM CDT

What an enriching week it has been.

As I type I hear Olivia reciting a ditty her Great Uncle played with her and it reminds me of all the small moments and the larger more complex ones the kids shared with him. David learned to play croquet as well taught Uncle Bill how the DeKolds play MONOPOLY! Olivia knows all about the hummingbird and David how to catch the lizards. What rich times. Olivia was found on his lap or on his chest depending what HIS orientation was.

The last night David and Olivia followed him as they wanted to see his ear plugs. There Olivia asked, "Do you see anything new in your bed?" "I've put softer pillows here for you" and David's placing his toothbrush next to his Great Tio then Olivia to follow a day or two later.

Having Grandma here was such an added bonus as it gave Tio and me time to explore-such FUN! He is patient with all my questions on plants.

Olivia is on day 4 withOUT any replacement fluids; she did catnap on the way home from our stop over at Darla's.

Grandma is now in Cincinnati with her dear friends.

So we DeKolds are ON our own again.

As I drove home today and thinking over the past few weeks I was impressed how Olivia wasn't overly medical with her Uncle. She knew he was aware, but she didn't talk about her tubies a lot and didn't show them off.

She just ~was~ with him.

Thursday, August 5, 2004 10:28 PM CDT

Utterly blessed.

I am.

The flow of this week has been so sweetly spattered with special attention geared toward David and Olivia.

Today Grandma gave David an introduction to chess while Uncle Bill played his own sort of word making with Olivia.

Later while UB and David played Monopoly-I replaced Olivia's pouch. After a pouch is placed it required Olivia lie still which means we usually like to do it before a nap or nightsleep, but sometimes doesn't fit that way. SO today Olivia looked through MANY books for over an hour all the while soaking up (I'm sure) all that was being said during the heated Monopoly game.

Olivia went without naps and replacement fluids today. Her clinical nurse responded to an email saying that basically to take it easy with her-that we want her to feel good.

Yes.

Having my Uncle here has given me a respite from the reality which is ever present and all encompassing.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Praying for some very special boys out there who are struggling.

Power to the Mamas and the Papas.

God's Power.

Wednesday, August 4, 2004 9:10 PM CDT

The last of the antibiotics for the UTI were run this afternoon. I'm not 100% sure that Olivia's UTI is gone.
Sent an email out to her doctor and he reminded me that really there are only certain folks who should look at her films-those who KNOW her.

She looks gray and was pukey today. As I cooked dinner she vomited at just the smell-a common thread for such a disease but something that she hasn't done much of but has been more as she gets older.

But none of that has cooled her affections towards her Great Tio from New Mexico. Tonight as David and he were playing a couple of rounds of Rat-a-Tat-Cat I found Olivia safely sitting on his lap. AND she gave him a good night hug-that is major stuff.

Friday we'll take her urine in to see what is going on there. I feel like our coverage is gone being off the antibiotics and am a bit fearful.

Am going to SLEEP NOW because I CAN-no more med balls for now!

More later-

Saturday, July 31, 2004 9:39 PM CDT

This week could have been a year with all the emotions which were wrapped so tightly around each moment.

Just a week ago the kids and I had just arrived home from Peru. Olivia was starting to vomit and not feel well in general, but tonight Olivia is quietly resting with her hair washed and dressing changed.

David and Olivia enjoyed both Elise AND Lunden today as they came bearing gifts then later came by to play "LIFE" with David and check out the iceeEEEEEEE machine.

Tomorrow Uncle Bill (Tio) is COMING EAST! We are all very excited.

Olivia is looking so so so so good. Praying she can have some great days while her Great Uncle is visiting.

Friday, July 30, 2004 3:44 PM CDT

Friday.

Olivia has her gray cast about her, but she and David reclaimed their bond through a variety of play today.

The antibiotic schedule is very doable. 6AM-2PM-10PM.

But my worry are THE Gram Negative bacteria and IF a UTI can swing her to the other side; what is next around the corner?

We have been so fortunate that bacteria has not gotten into her blood stream.

Weird being home-regaining control over parts of life, yet still spinning around and round.

Olivia is napping long and hard which she needs. I do believe we will have another restful night.

Thursday, July 29, 2004 8:46 PM CDT

Home.

Olivia sleeping before we hit the interstate.

I slept between my parents on the way home.

Stopped by Kosair and got the van.

Dave home to prepare Olivia's TPN and I with David to the PED's office.

There the nurse who first led me into the office as I carried my one week old boy stood with a few others and sang Happy Birthday to him. I realized I hadn't even sung to him.

He indeed has strep and got the shot in the butt. It is like the period at the end of a sentence hoping the end of this sickness here.

Time to heal the many types of wounds now.

Thursday, July 29, 2004 8:16 AM CDT

Nurse Gerry is NURSE of the century.

Not only did she come yesterday but stopped back with a bouquet of her own garden's flowers.

My concerns:

Major DARK green bile OUT the Jtube and NOTHING out her ostomy.

Gerry nodded and said normal. She confirmed all that I had learned from TPNsupporters.

Going to send us home on two medications every 8 hours, not sure which yet.

Olivia did have a pretty good night-she is tired today as she was running on feeling better energy yesterday but today she is tired.

Waiting for Grandma so we can go to the gift shop for David.

She on her own decided her HUGE horsey balloon is going to David. She has been talking about David's birthday and BEAMED when I read Elise's entry.

Thanks to all for your encouragement and wisdom.

I believe as well as many others that this was a heavy duty PSEUDO flare.

Wednesday, July 28, 2004 10:47 AM CDT

Olivia arrived with Daddy and a GREAT team of folks from Transport around midnight.

Mom and I were waiting outside for her; so thankful we were able to beat them.

Olivia had been given morphine while at Kosair and was given while on her journey to Cincinnati. So when I saw her she was out of pain, but when put in her room the pain started up again.

While lying in bed I noticed that her Jtube looked as if it had drainage yet there was nothing coming out into the Farrel Bag. During my time away to take Mom back to the hotel Dave managed to syringe out about 400cc out. THEN when I returned her bag was FULL as a TICK I thought it was going to POP! After that she SNAPPED back-NO PAIN-and has been PAIN FREE for almost 12 hours now.

GI came around but I was back the hotel and Dave was awakened out of deep sleep so not much there, but I did track down the floor doctor. They did take another picture and we are waiting to hear what that said. Going to watch her today; she is very tired, but talking-HAPPY-precious and brave.

We had some pretty deep talks last night she and I. I had to explain to her why I was not with her and why I could not sleep with her up close. She started out being angry with David for waking her up in the mornings (it is more like SHE wakes HIM!) and I asked her if she missed her brother and indeed yes. Then she said he had surprises for his 2nd birthday. She wanted to get a Slinky for him and more Lego. We talked about Jesus.

She is watching "Where is GOD When I am Scared" then naps-then some gluing then playroom.

We may boot Daddy OUT Of here this afternoon so he can go back to work. He tends to clutter this room.

Dave is awesome and I look forward to really hearing about the transport. I did get to speak to Olivia at the get go-my Brave Girl.

My continued inspiration.

(Our phone works now in the room!:)

Tuesday, July 27, 2004 6:27 PM CDT

Dave and Olivia are waiting at Kosair ER for Cincinnati Children's Transport.

Mom and I are driving up ASAP.

On one of her belly pictures it looks like there is something mechanical or ?

We are very concerned.

Tuesday, July 27, 2004 7:42 AM CDT

Olivia fell asleep in the truck.

GI on call received yet another CALL from us-she felt it was truly UTI related and there was nothing they would do differently than what we were doing already so we came home.

PED appointment at 10AM.
We shall see.

Monday, July 26, 2004 9:26 PM CDT

Tears.

Taking Olivia to Cincinnati. Her pain is beyond Tylenol.

Mom is here and Dad too. David is crushed, but is all right.

Monday, July 26, 2004 7:57 AM CDT

Prolific.

Countdowns galore 'round here. First there is Grandma Lodgie's arrival tonight at 7:27PM. Then of course David's BIRTHDAY tomorrow. These are both very important events in this household but there is yet another which I've been counting down for as long as it has been in place.

My dearest Uncle Bill from New Mexico is coming HERE next Sunday. While our Tia (Mom's oldest sister) is away in Taos for watercoloring with other artists TIO is coming here. Did I say my UNCLE is coming HERE? I reminded Olivia that tomorrow morning Grandma will be with her and that maybe Uncle Bill will watch STANLEY with her. I keep giving the flowers pep talks as I want them in GOOD show for him.

It all follows the flow of how blessed I feel with all the dear special people.

After receiving a full day's dose of Gent at 5PM Olivia seemed to be snapping back into place. She only vomited 4 times through out the night and asked for her tube to be vented only once. And this morning she spoke my favorite words, "I love you, Mama". OH YES! I love you my dearest daughter! Before getting sick she went around saying "You are my most favorite lady" "You are my bestest Mama"

David is finishing up his Monopoly game he and Daddy started yesterday right now-BY HIMSELF! What a TRIP this boy is getting to be! He is actually TALKING to Daddy as he plays. IMAGINATION! It is more like SINGING to Daddy!

BAN VIDEO GAMES!

Sunday, July 25, 2004 5:49 PM CDT

TWO days and David will be SIX years old.

He and I headed out to TOYS R US as there were NO birthday gifts for him yet. Chess and another K'Nex set. All the while he played at the big slide inside the store.

My heart was all the while stuck in my throat as I held back tears that there was someone missing.

Dave and I agreed that IT had to be another UTI and on my way out with David we stopped off at the LAB with Olivia Urine.

There a Lab Tech and I muddled through the fact Miss Olivia has a standing order. At which time the Tech asked if I DREW Olivia's blood every time. I explained that Olivia has a central line and all else she has. She was so sweet and genuinely sorry-saying I was super Mom and my mind immediately went back to the article written by a Daddy about his almost 5 year old daughter awaiting a new small intestine. I had just read it the night before. His cousin said something about you are going to deal with things because it is there to be dealt with-simple as that. Simply stated and chalked full of wisdom.

Calls back and forth and indeed our Olivia is in a full blown UTI, pain, vomiting and our stand by homecare company had antibiotics here within TWO hours. Blessed.

Papa just stopped by with his birthday present to David. Miss Whitey. She is a white Auracana and will lay interesting eggs. One of Papa's favorites.

David was such a dear today with the birthday hyper energy but I realized his is also nervous energy for his sister. He asked for a balloon for his sister. Heart stuck in throat. He took part of his roll out to feed the baby bird we saw on the way in; he concerned over it throughout out our brunch. He is cut throat now playing Daddy Monopoly. David ran to get Olivia's supplies to cath her; set up Dumbo for her-remarked that Olivia will start to feel better after her nap and having her first dose of antibiotics. Lump in my throat-yes, David, but even at almost SIX that saddens me a bit HE knows such. Just where I am today.

Olivia is starting to talk again. We miss her so when she shuts down. I hate pain; she insists she doesn't want anything for it. She is what? FOUR YEARS OLD? Wild. "Ah, there is Dumbo's Mama". "David-here comes our favorite part" I sit and see her smiles with her HUGE "HOPE BOX" next to her. She saw her name and wore her first REAL smile of the day. Tears.

Reminding me that Olivia asked if she would still have Tubies and TPN when she is a Mama. (Whew-lump is NOW lodged in my throat) We've talked a LOT that some women are never Mamas that God has a different calling for them. She insists she'll be a ballerina then a Mama. She took the idea of TPN and TUBIES as a Mama and said that she would "just be a special Mama with her Tubies and TPN".

I fight the Marlin in me constantly. God knows what she will be able to do and NOT to do-I just need to stay out of HIS plan and be more trusting and full of Faith.

Saturday, July 24, 2004 8:13 PM CDT

Taking all the backroads from Floyds Knobs stopping off at Versailles for Papa then on up to Peru-David did some serious map reading and Papa was in his true element. Driving and pointing out all sorts of wonderful sights.

Riding with my Dad would be in my "Favorite Things" list.

Olivia was in a rollercoaster medical mode needing to be venting via her G-Tube and J-Tube most of the trip.

We were able to visit Grissom Air Base where Papa did some work long ago and the kids sat in helicopters and Air Force planes and gazed and amazed at the planes in the grass outside.

After naps and a batch of replacement fluids we met up with Aunt Linda, Uncle Bobby, Cousin DJ (I'll always call him DEEEEEEEEEEWAYNE-THE MAN), Cousin Tammy and PRECIOUS Daniel. I felt my Grandparent's presence as I changed a leaky pouch right on the grass my Grandma loved to just lie in as we all would-as we talked and talked. Wild. Heart. Love.

I knew the pouch would NOT stick as David and Olivia were aching for the NEW playground just down the street. This was THE most fantastic place and after 30 minutes her pouch was indeed leaking-and she was in a high volume stoolage at that. Lovely. Just keep smiling.

Aunt Linda so precious with love and concern. Papa helping carry urinals G-Bags. Tears. Thankfulness.

Peru's Circus is THE largest amature circus in the world I do believe. The performers are 21 and under. It was THE most spectacular show-from tight ropes, trapeze, juggling, UNICYLES (COUSIN DEEEEEEEEWAYNE is a trainer and DANIEL PERFORMED) the list goes on and on-David was high on cotton candy and Olivia was waning but hung in best she could.

With a fly by visit like this-it is just a taste. It is bittersweet. Wish it could have been longer-always wanting more.

My heart is so full of concern for Olivia tonight. In thinking August 12th is her next clinic-there will be no praises of how great she has been doing. She hasn't been able to tolerate much enterally and tonight is experiencing much pain.

The showers of blessing overwhelm me-I could feel in my Dear Aunt's hug her love and concern and as she whispered in my ear--

"Be strong"

I am reminded of Kyle Noble-

-of Heidi and her Sean and all they've been through and the times ahead.

-of Hope and Natalie.

-of Dan, Shelle, and Hannah.

-of Darla and her loss of not only a son but a dear friend.

-of too many.

And as I checked my messages on my phone tonight I saw:

Joshua 1:9.

Be strong, be brave, don't be afraid.

Our family reaches far beyond and my heart aches for our extended family-those who live it daily and know that when it is hard it is hard-even behind the smiles.

Strength.

First sleep-then maybe tomorrow strength.

Only from Him.

Wednesday, July 21, 2004 8:09 PM CDT

David loves Spencer. Eating lunch at Miss Kim's I saw David pat Spencer's knee. They almost hold each other at times. Darla mentioned how Spencer misses Matthew and his need for an older brother. I realized today he IS the big brother now. Tender.

Tomorrow the kids and I will stop off and switch over baggages and supplies into Papa's truck to zoom up his home town for a TWO night stay! The kids are beside themselves with anticipation.

I'm full with longing of seeing my Grandparent's grave sites and see a town which remains so dear to my heart.

But to see my Daddy's sister and everyone else brings tears to my eyes. Full heart.

Olivia woke up after a night of GAS! Her pouch was HUGE several times! BUT flat belly!

Praying for GOOD days while in PERU!

Tuesday, July 20, 2004 9:50 PM CDT

Feeling the deep energy of teaching my children in a very natural intense mode as of late.

Playing many types of games with David and Elise took over for a bit today as well while Miss Kacie and I dueted on our flutes. It is such a high. Almost needing to cry in the midst and a full heart swelling of thanksgiving that my parents in all their wisdom gave me such a gift-lasting gift. Miss Kacie and Elise are two extraordinary girls-lasting positive impressions for David and Olivia.

Looking at the above photo which I believe Dave took. It was during our visit to St. Louis to visit Grandparents, Uncles, Aunts, Cousins-a family reunion. But there in the front lawn David and Olivia enjoyed one of the simpliest pleasures of Midwestern childhood summer. (Nothing I did as a kid as we had a well.) Olivia is in pure water fun. Thank you-Grandma and Grandpa-Uncle Ken and Aunt Janice (Dave's younger sister) for making it such a special visit. Aunt Janice came back (Jan and Ken live next to Dave's folks) over after going home when she found out David wanted to eat cake with her. Tears.

**********************************************************

Tonight Olivia's pouches didn't want to stick. David and I took off for a walk. It was nice to slow the pace down and just "be" with him withOUT counting money or this or that. Just freedom. He found what we think is a hawk's feather and several interesting fruits from trees.

When we hit our horseshoe road David wilted and made grass angels in Mr. Bob's yard as Daddy spoke with our dear neighbor.

Olivia fluttered out so she and I walked about a mile together-we were butterflies, bumble bees, red-headed woodpeckers. Of course the baby butterfly came to the mama butterfly for water.

Olivia had NO fluids today-still distended but clearly feeling well enough to run. She came to live tonight outside.

David's giggle.

Olivia's stories.

David's contemplating the next Monopoly game.

David's watch care for Olivia.

Olivia's pestering of her brother.

Brother and Sister.

Olivia Blinn.

David Peter.

Monday, July 19, 2004 10:54 AM CDT

Weekends-accomplishing more than sleep and laundry.

Olivia seems to have snapped back but this morning after unhooking about a liter of bile drained out of her G-Tube. We road bikes over to Matthew's house where David stayed. Olivia was very concerned about tipping over and on her BIRTHDAY bike. She was unsteady-not really like Olivia.

Back home she dusted and now sits-tired and quiet.

A big weekend by our standards. Full days outside playing ball-spys-running to and fro-no wonder slow today?

Last night when time for Beer Can Chicken to go on the grill the kids were corralled onto the deck. We chose to make the deck an extension of the house not accessible to the yard. Glad. There David and Olivia played with their insects going on and on in their imagination. Still outside but calming down. Stripped down to Aquaguard for baths-they continued their play. Never really skipping a scenerio until hair washing. David took it well bent his head back and dried his eyes on the towel, Olivia screamed and David told her what to do and gave her the towel to dry her eyes. He was so loving. Before baths while I was gearing her up-he loves to help take off the backing of the Tegraderm and commented on her JTube. Olivia reminded him it was a new one-because the other was clogged, Mommy changed it during her sleep. Such conversations-so naturally their own diction.

Olivia found the oak's leaves with the pods stuck to them. She insists they are stomas. Olivia is clear that her Great Uncle Bill the botanist will clarify all her questions and concerns over the flowers. "Oh, Mommy-another SUNFLOWER is SHOWING"-"Foxglove is dead".

A short stop in visit by Papa Virg; there Olivia gave her WISH list-Pony, Tent, and Club House. She is determined to get a WISH because ALL kids with TUBIES get to make a WISH.

The kids and I will be driving to Peru-Circus City Capital-where my Dad was raised. Hoping Olivia snaps into place and no more see-sawing.

Next week Grandma LODGIE (LOGI)-ONE WEEK from today! Then the next David BOY'S 6th birthday! David is determined that NO on will boss him on HIS birthday and he can do whatever. Makes me laugh and cringe at the same time.

Time to cuddle Olivia into a rest before Cheryl comes as I'm adding spice to her hair again.

Fun.

Saturday, July 17, 2004 7:22 PM CDT

Pseudo Obstruction.

What a strange disorder which tries to control our surroundings here.

It seems the liter of fluids yesterday got Olivia over her dehydration look and the dumping of stool seems to have slowed down a bit; she is receiving some enteral feeds-Jfeeds which enables us to see some good stooling as well.

I disconnected today. A local nursery was having its summer sale and it was time to spruce up a bit.

There I found the Sensitive Plant. One of my all time favorites which I have yet to show the kids as they'll touch it too much and I wanted to get it repotted first.

Lemon Grass-new petunias which both kiddos helped plant. Something about planting with them which soothes my soul. Olivia planted the petunia plant all alone while David and I were disengaging the root bound Lemon Grass from its small home. It is now very happily waving next to the penstemon from Papa's and Olivia's Jelly Bean tomato plant from Auntie Joyce. David's Goliath tomato plant is JUST that! TALLER than DavidBOY!

David with a bit of a cold when not playing with Olivia seemed lost, but Olivia seemed content to hang out with Daddy-O in his garage right next to him-learning.

More I needed to say but can't seem to feel the beat of the words.

Friday, July 16, 2004 7:29 AM CDT

Last night was one of THE worst nights for Olivia.

With little Cierra on the other side I opted to sleep at the foot of the king sized bed. Springing to action each time I would hear Olivia retching. Two years ago when this was a norm she would not hold the pan, but now she is well into a session before I am awakened and she has her pan in position.

Lindenmayers were here yesterday for a relaxing day and finally Spencer and Cierra were able to spend the night. All four kids were so good and appreciative.

Maybe it was the popcorn that got Olivia started?

She hasn't really eaten much in the last few weeks and if she does-she gags.

Her color is a bit off too so when her tummy looked soft and flat (not a GOOD flat but a start) I started Jfeeds. Maybe not a good idea.

David so enjoyed having Spencer here yesterday-Olivia was distraught as to how her brother left her out. I had to remember back-yes-that is a pretty natural thing and let it go. Talked her through it.

Hoping that whatever it is which is making her vomit so often has passed and she can have another good day.

She has good days despite. THAT is the real blessing.

Wednesday, July 14, 2004 11:19 AM CDT

David and I played Monopoly yesterday.

Olivia rolled the numbers when she felt like it. It helped keep all our minds off the fact she was not well. I realized while hooking her unto TPN last night that we had not heard any laughter. Then she said "poo-poo" in the cutest voice and I said say it again and instantly we had belly-Olivia-laughter.

Monopoly was interrupted by 80 MPH winds which sent the kids and me down to the basement and concerned about Daddy driving home.

Olivia's belly is still big not her biggest and has been spying on me with her new binocolars from the library while I clean up debris out back.

They both continue to thrill me with their sense of imagination.

My David boy was so loving; he ought to be-Park Place and Boardwalk with FOUR houses and ALL four of the RR.

Today looks like a decent day with Daddy surviving his presentations and BRINGING home Chinese! Celebratory day!

Tuesday, July 13, 2004 7:54 AM CDT

Last Friday Olivia stopped ALL stooling. And increased her G-tube (bile from her stomach) drainage.

I had hoped it was a day thing but I see now it is Tuesday and even though yesterday and a little last night her motility seems to have clicked in a bit-she is distended more today and has grown bigger as each day passed.

There were a couple of days in which she mentioned pain and I see it in her face she is not 100% right now. Trying not to borrow worry that she is heading into a full blown flare.

It could be a long day today with our air/heat being replaced and there is a promise of good ole Midwestern heat along with its cousin humidity. With the workmen's suggestion I cranked up the air in hopes of keeping it cool until they are finished.

Time to unhook Olivia and see what we have.

Monday, July 12, 2004 1:15 PM CDT

Trisha is one of my longest and dearest friendships.

Her Mathilda was born at home and discoverd soon after having cloaca. Spent her beginning weeks covered in IVs and eventually surgeries.

She has been such an influence on my life-for the better.

How our lives have changed and as we sit capturing our lives-our fears-our joys-disappointments-it is incredible how we both have little girls which require special care.

The visit was so rich in bonding of children-yes-squabbles but also moments-precious.

We tye dyed.
Painted.

Stamped.
Built trains all about the big room.

Trisha gave me a lesson in making crepes with Mathilda and Olivia's help.

Three nights of staying up past any cathing schedule; it was worth it. To laugh again-to quietly reflect.

Our hugs were more meaningful-tears.

Since the passing on of Sarah and Matthew-life seems more meaningful with a thickness of care. To make each moment given count-to say the inner gut emotions-laying them out.

Trisha may you continue to be that Succulent Woman.

Saturday, July 10, 2004 8:13 AM CDT

Wednesday evening my long time friend Trisha came down from Cincinnati area with her two-Ansel, 8.5 years and Mathilda 2.5. Trisha lives in France with her husband who is a veternarian.

Both kiddos (Trisha too now) have adorable accents. When I say "Mathilda!" she'll say "Quoi?" (Ansel just told me how to spell it!) meaning "What?". Both children are full of imagination. Which makes it easier for Trisha and I to visit.

Bilingual. Yes!

David was so cute the first night in bed he whispered "I have a hard time understanding Ansel's accent!" so we talked about listening carefully and keeping what he is talking about in context. But it isn't an issue as David gets him. I saw Olivia kiss Mathilda. They are TWO girls in a pod although Olivia has moved out of the 2 year old stuff it has been a delight having Mathilda-she reminds me of Olivia's spunk at that age. GIRLS!

We collected rocks down the road a couple of days ago and picked them up last night. The kids insisted on walking so I drove back while Trisha started the trek home. Olivia was running up a storm, but Dave just walked out and said she looks like she is in a flare. She had a lot of green bile last night out G-tube. But its all right-its all right-it ALL right.

Wednesday, July 7, 2004 8:13 AM CDT

While I weeded on the side garden the kids played in the sandbox. Listening to their dialogue and interaction warms my heart. Since David's return from his visit with Papa he has been even more kind to Olivia. They had only one scabble later in the day and I heard Olivia come out asking David if he was ready to play her way.

Lots of storms in the sky and even though things here are going so well my heart is stormy of sorts.

Hope's Natalie-Donna's Kyle-Anne's Sam. They all need mercy and a major break.

Monday, July 5, 2004 4:17 PM CDT

Daddy was in the garage fixing and making wood things.

Kids were in the basement playing up a storm.

Olivia content to have her brother home and David happy to be here.

I'm here and there picking up and organizing oodles of Olivia supplies which seem to multiply.

Even the ground is happy with a drink for Heaven.

It is a good day. Mixed up rice crispy treats which now David will make into all sorts of shapes and decorate.

Beer can chicken on the grill.

Life is simple and good.

Sunday, July 4, 2004 10:31 PM CDT

I'm speechless-no not really-singing praises of thanksgiving.

Papa brought us David and with it many new memories of which I still need to hear in full. Tower A-stunt planes-
But today was a special day indeed.

We were invited to Miss Robin and Mr. Dan's house. Robin cuts my hair and loves gardening and does it in similiar fashion. She is sisters with our old neighbors who we love very much.

On their 3 acres they have not only sweet gardens, but a pond. There the kiddos got to take a paddle boat ride-Dave and I played a game of volleyball which reminded us both of how much we love to be active. Food-dear people who allowed us to join with them. I do believe we were one of the very few not related. Sweet.

During the storm they broke out a Karioke machine. I know I didn't spell that correctly. It was a blast. Being the song bird that I am (or as others might perceive a MIC hog) enjoyed singing and with John (our old neighbors BUT his sister is moving in soon:).

The kids floated about doing their thing-mainly Olivia hanging on David instead of me and David wearing his Oley beach hat from last year with two leaves coming out of the top. Huh? I love it. May make people wonder, but makes this Mama know her son is his own man. Oh yes- and fishing.

The fireworks were fantastic-roasted marshmallo and SMORES. A very full experience for us all.

We got to see a snappin' turtle and a snake. David informed the "Twins" that there is NO such thing as poisonous snakes only venomous. She was so impressed asking if HE went to school yet. Yes. He's been in "school" since the day he was born. With that David hugged me; tender boy that he is.

There was a man there who works at the local children's hospital. As he left I told him we "do" hospitals a lot. Then told him all about Olivia; he had no idea! Wonderful. I love it. Thank you GOD for a NON medical day.

What a great summer the kids are having-and really the best is yet to come.

Saturday, July 3, 2004 8:50 AM CDT

"Papa's trucks are all girls," David announced to me over the phone last night. My grin grew.

Why is it while my son is home I feel that he will never mature enough to throw away his Boost container? Yet while I listen to his take on his day with Papa he sounds like he is 9? David has contracted a VERY Southern Indiana accent which orginated after a weeks worth of VBS.

Olivia continues to insist on ballerina outfits throughout the day. She is the armpit kid while David is away. Her independence out the window and attached to the side of my body. She looks good in every way. Her obsession right now is the end of the world. Wondering what will happen and where all the buildings will go. She likes to ask about the ending of people's lives as well. Asking if Papa Virg would be alive when she is an adult. After digging deeper into this subject on the way to see Papa Wednesday David exclaimed that he NO longer wanted to discuss the subject and I had to agree.

Last night I reminded to David that after Noah and Noel leave we'll start doing some Table School. He said he loved doing math and really wanted to read more. He is ripe and so is Olivia in her 4 year old way.

I have really taken a LAID back approach but look forward to finding a few outside activities for the kids this fall. Soccer and AWANA for David and Reading Circle and AWANA for Olivia is the start. Still would love to find THE perfect person to teach piano-but I guess it is still me.

Dave is OFF Monday! What a blessing! We are still digging out of the hole which we fell into 2 years ago, but at the same time enjoying our days. He has become a hands on Daddy working his projects with the kids along side. True homeschooling in my opinion.

Prayers for our dearest of friends struggling; may they see the sun today.

Thursday, July 1, 2004 7:12 PM CDT

Red Jello and whipped cream alternating in a clear plastic cup is what Olivia chose after her line repair to eat. With a spoon she licked the whipped cream never making it to the Jello switching to a pickle with mustard.

Olivia was uncharacteristically quiet today and little warm with red cheeks.

She was nervous!

A resident joined us during clinic where Dr. K shared that Olivia's Pseudo Obstruction is severe throughout her GI with bladder involvement. We each sang praises for Zelnorm because with it Olivia receives about 25f her nutritional needs from her enteral feeds (J-tube). Her labs were awesome. Blessed and thankful.

The line repair was remarkable; gave me a new appreciation not only for Nurse G. but to the central line. Olivia played with her little animals the whole time while I watched. Basically she CUT the line and took a new line with a metal stent gluing it into place. Her catheter is longer now, but in the end Olivia did say she loved her new central line and clean clamp.

So for now David is at Papa's doing what they do best. Daddy hooked Olivia up to TPN/lipids tonight and I am going down the hill to walk the aisles of Stuff Mart looking for annuals to plant with Olivia-flowergirl tomorrow.

My heart is heavy not just for little children who are dealing with major issues but the amazing mothers who keep life flowing for their children.

God bless the Mommies.

Tuesday, June 29, 2004 11:45 PM CDT

Olivia's blood drew back beautifully today. As she held the vial tubes and gently mixed them she commented on what good blood she has. I pray so.

Having read the twenty books, it was library day. David chose a plate to put on his bike with our library's name and a slogan about reading. Olivia binoculars.

While there a woman introduced herself to me. Way back when Olivia was a baby I did Jazzercise then again she saw me at the library for Reading Circle. She was from Muncie where Sarah and she shared a year of high school together. She found out about Sarah's death-journal-therefore Olivia's. Very small world indeed. It was encouraging for her to step up to me. Of course as we spoke Olivia was tackling David to the floor. She was a relentless little sister today. Thank you God.

After naps we restart the day with music again and with it Olivia put on two new ballerina outfits, put Cadbury back out into his run.

David can carry Cadbury and can recapture him almost as good as I. He has learned to crouch down and not run after him. I love how David is turning into a animal lover.

Daddy took David to get fireworks while on a donut buzz while Olivia and I puttered-weeded while of course wearing a different outfit-her multicolored.

She and I rocked in the chair while I sang to her. I love how she is growing to love music more and more.

Tomorrow we'll head to Papa's to spend the day and night and run over to Cincy from there to check in with Dr. K. and hopefully get Olivia's line repaired.

It is all good, but prayers always appreciated.

Kyle-Sam-Kody-Makenzie-Miss Hannah KEEP GOING GIRL! And for those traveling to California for the Oley conference we pray it will be a special time.

Monday, June 28, 2004 11:49 PM CDT

We have a friend who is off of TPN right now. Denise sent Miranda's supplies and in another box was filled with ballerina outfits.

Six or seven?

Twirls - spins -then a new outfit to be tried and with it a dance.

Olivia NEVER would wear a one piece of ANYTHING which restricted her tubies but these fit perfectly and she didn't mind that they weren't pinned.

It was precious timing as Cheryl and Matthew popped in and Cheryl being the kind of Mama sat and indulged in Olivia's prancing, while David and Matthew made airplanes.

The next coolest was how Matthew and David allowed her to do her thing and when she switched her frills and tubies all out there to see-no comment.

Bike riding and bunny chasing (since Cadbury LOVES to escape when the bunny run is lifted) and even some celebratory sparklers.

Thanks to Denise for such a sweet gift.

Thank you GOD for such a wonderful day.

Monday, June 28, 2004 3:00 PM CDT

Received an email from Olivia's "clinic nurse". She agreed that a line repair is due.

She said it'll take about 30 minutes which she'll do after seeing Dr. K. for her "normal" clinic.

Have not seen the dilation since that one night and her line is flushing nicely so hopefully this will alleviate any problems.

Tomorrow I'll draw labs and we'll drop them off on our way to the library. We'll have completed the 20 books or 1000 pages for the book club. Goal reached-good feeling.

Last night Aunt Midge-Uncle Jim-Cousin Mindy along with 2nd cousins-Alex, Lindsay and Eddie popped in for a quick visit on their way up to Northern Indiana. Always good to see family no matter how brief. David put on his boots and showed off his hens; he really is proud of them. It is soothing to hear their hen purrs and clucks.

As I type I hear Olivia's pump singing its tune of fluids.

Sunday, June 27, 2004 5:25 PM CDT

Journaling-thoughts.

Assigned seventh and ninth grade English my first year of teaching-it was journaling which made the class.

Thoughts on the moment-off the cuff?

Daddy and David completed Bunny's run and there he is with the cool grass beneath him-as it was meant to be. He nibbles on the grass with a twitching nose.

Olivia request pictures after making herself beautiful with bows, necklace and anklet-nothing I've pressed on her-just the opposite.

For hours my children's imagination to far away places ran and complex plots they play-until covered with mud.

There they are cleansed and my heart rejoices in yet another day.

Friday, June 25, 2004 7:36 PM CDT

*************************************************
Olivia's central line is different. Below the clamp it looks like a snake which has eaten a rather large rat. When I used this analogy for Dr. B over the phone he chuckled. And after a few volleys with emails with Olivia's homecare pharmacist I feel better-but not relaxed and will not be until rectified.

Days here are full. I like being home alone with my children. Our flow throughout is so natural and their drama play fills in any the cracks between art-food-care-chores-care. I've stepped off of David's "book" work but stepped up reading to them and David reading to us.

David asked me who was his oldest friend-first it was Elise-then I asked him if he considered his Papas as friends-indeed! Papa Pete won out as the oldest friend. He did mention Aunt Velma who passed away-bless her heart what a saint of God.

************************************************

As I tackled Olivia's room we discussed what she played with and what to do with what she doesn't anymore. The blanket answer is for everything to go to Cousin Carolyn.

************************************************

www.caringbridge.oh/kyle Please pray for Kyle. We have met him and his family were hoping to come here this summer. He has a VERY bumpy road ahead of him. Talk about brown eyes.

*************************************************

Thursday, June 24, 2004 11:03 PM CDT

The moderate temperatures have made this summer a delight thus far.

With two infusions of MEDBALL breaking up Olivia's 12 hour TPN schedule she's had to be hooked up longer making our days starting a bit later.

Today was an especially fun time since uncovering many art supplies in a basement which was used as a dumping zone over the winter-the kids and I made wood blocks for printing. David took me into Daddy's -neverneverland- garage and we picked out all sorts of fun stuff to create texture and pattern.

Of course all of this done in the shade of our two oak trees outback and each made a few prints with glitter sprinkles.

Olivia wanted to keep going so they both glued found objects onto their blocks.

David has stepped up to the plate and has been patient with Olivia during her time of adjustment.

Tonight I had orchestra practice; it is a big deal. Many local musicians come in to complete the need of certain instruments. I warned David and Olivia of the importance of their being quiet. Everyone saying how well behaved they are-I look and what do I see-but OLIVIA'S FOOT and leg and David sitting there smiling. She was having TOO much fun kissing David and hugging him. He was really trying to maintain as he knew if there was a problem---he came to me twice saying Olivia needed to vent her tubie.

Sure didn't look like it to me as she BOUNCED down the aisle.

But Daddy came to the rescue to my relief since I really did need to focus on what I was doing-playing.

So, yes-Olivia has bounced back-another crazy rollercoaster twist. Although fluids are needed and major Gtube venting too-she was in much better spirits with NO mention of pain.

Praises!

Wednesday, June 23, 2004 8:40 AM CDT

The look is back.

Yesterday Olivia walked down the hallway with her ear on her shoulder walking in a zig zagging path. Coming back from the family bedroom with a pink pan. She sat and vented her own tube.

Olivia had a full blown 10 scale melt down yesterday. She was angry with me and told me in every form of hitting, scratching and words. Her face twisted and tormented she clearly was furious. It didn't pass quickly, but eventually she said she loved me and was sorry without prompting. David was very helpful throughout and was so concerned. We both reassured we loved her. He was so tender. Later I heard her singing David is the best brother.

So that afternoon I had a napmare. Cuddled with Olivia in my arms I dreamt that a woman pulled Olivia's central line out at the movie theater. Then when I came home I could not remember the number to Cincinnat Childrens. There was more to it and scary I awoke from a much needed nap almost scared and paranoid about her line. It has been a bit of a concern lately. Still a little stiff in flushing.

As I was going through the puzzle cabinet and saw the scrapbook Kim made for me I could not help to rest on Olivia's baby and toddler pictures. How beautiful those rose lips and such a cheering smile. How much pain she must have dealt with before her words? And as I read the books she had picked out last night I was reminded how young she still is and I could see those little lips as I read taking it all in. She is just so beautiful from this Mommy's perspective.

There has been more vomiting lately and this morning she stated that today was going to be a down day.

Her tummy hurts.

Time to get distraction mode in gear and change it from a down day to a glorious one.

Sunday, June 20, 2004 3:26 PM CDT

A Hijacked Journal Entry:
It is Father�s Day. What better day than this to hijack the journal!

It is afternoon. I have just taken a brief 20 minute nap (not a power nap; just the plain old lazy day kind). Things I should be doing right now and aren�t: finishing taxes (ugh!), putting the grass catcher together and picking up the fallen hay-length dead grass that is every where on our front yard, work for Monday at work. Things I have done that I should have: eaten Krispy Kreme glazed doughnuts for breakfast, called my Dad. It�s a good day.

I never thought I�d be a dad. My previous marriage ended, I was 43 ish and it had never happened. Met Sheila and it was the right girl, wrong time and generally too late. But it happened. It is still a thrill thinking about holding your first (second) child when they are so small that they fit in the crook of your arm. It breaks the heart of the biggest strongest man. You change in that moment and are never the same. Good thing too because that moment carries you through the later times when you want to choke one of �em. Mostly I remember staying up with Olivia, dancing and singing to her because she didn�t sleep well.

Fatherhood changes one for sure. We were driving home last week from St. Louis, me and the kids (only). I had hooked Olivia up to fluids as late as I could so she was hooked up during the drive. This drive is 300 miles. I have made it before (sans kids) in under 4 � hours. David and I had made it together that previous Thursday in 5 hours. Great drive � good time. Coming home I hoped to make it in around 5 � hours so that I would not have unhook Livvy on the road or cath her, both of which would be better done at home.

Awful trip. Her pump went off every 20 minutes for the first 1 � hours. David had to pee at EVERY rest area. We literally didn�t miss even one. I was edged. Livvy wanted peaches to eat (try finding that on the interstate). We were 4 hours down the road and we weren�t even halfway yet. I�m thinking we were going to have to get a room and sleep enroute.

And then � one of those magical dad moments happened. (�What would Sheila do ?�) I acquiesced to the situation. One of our final rest area opportunities, I quit fighting the situation. We played on the swings after I cathed and unhooked O. We took our good ole time. Enjoyed the moment (beautify cool weather, the swings, playground, nice) I want to remember our trip home as to those last 3 hours, not the 7 hours it took. It was nice. Even though I am crotchety, I think I may have been made to be a dad.

Today also makes me think of my dad, Peter Carl DeKold. He�s 81 this year. Married to my 30 year old mother for over 50 years now. My dad was a great influence on me. We all become our fathers (or mothers for women.) I have never told my dad how much I respect him. Later in life we all learned to verbalize �I love you� (another Sheila contribution), but I find it extremely difficult to break down that one last barrier that says, �Dad, you were awesome. You taught me how to be a man, a man of my word, a man of honor. And Thank you.� I was born in the 50�s, which to put it into historical perspective, makes me the last of the John Wayne generation. I don�t cry at movies, I don�t vocalize all (or most) of my feelings. And I know I am running out of time for this one last thing I need to say to my own Pop.

My Dad taught me how there is strength in gentleness. Took me a large number of adult years to figure it out, it was so subtle that I couldn�t grasp it when I was young. And now, I walk (almost) in his shoes. I appreciate him all the more. And I find myself saying many of his own phrases.

Now my challenge is to bring up my son in the lessons passed from his grandfather. How do I begin to do it? Many times I am not sure. All I do know is that it is one of my most important tasks and I cannot back down from it. My son David Peter was almost named Peter David for my father first. He is the sole branch to carry on Peter�s family name.

Time to close. We are getting ready for �The Pool Party� for VBS (Vacation Bibile School). Will be interesting to see how Livvy handles not being able to participate in water activities. I�ve been hearing a number of times, �I wish I didn�t have tubies,� or �I wish I was David.� Oh Baby Doll. I am just happy to have you, any way. Share my joy, Little One. It�s Father�s Day.

Love to you all.
Daddy-O

Saturday, June 19, 2004 8:55 PM CDT

My sweet daughter is in an obstructive mode-full abdomen and an UTI to boot.

BUT Dave and I both decided it wasteful to sit around here waiting for antibiotics when the day was so moderate in temperature so we headed up to Lexington for a small town festival of sorts.

It is apparent when Olivia has had enough and with it me.

Darla as always was girl fun and to see how Spencer, David and Cierra care for Olivia blends my heart where there might be a cut.

Pool party tomorrow night.

We shall see.

Friday, June 18, 2004 10:58 PM CDT

David IS consumed by AWANA and VBS. I do believe he is a CHURCHgoingBOY. Olivia on the other hand is not nearly as dogmatic and is not obsessing over all that it means.

Which IS a blessing.

Miss Kacie and I got a bit of duet flute in before we headed over to pick up David's Matthew and My David Potts. I loved having a full van. Loved it.

But before the very first station Olivia showed me that her new pouch had leaked ALL over her panties and her pink shorts.

Cleaned her up and with Kacie right there called Daddy on her cell to bring some clean stuff.

Kacie was like an angel.

But mostly I stood amazed watching Olivia dance-chasing bubbles-with no fear of her pouch.

Then after her craft time we were off to put a new pouch as it had leaked all over again.

But she played with toys in a nursery type space as we listened to folks out in the hall talking about who won this or that in all the contests.

VBS has been such a growing experience for ALL of us. I still am the Marlin-fearful over things maybe I should NOT be-but also watching Olivia interacte has taught me that she really is adjusted and is not afraid.

There were a few kiddos who saw her tubies and they were horrified; my heart just broke for them and took them quietly aside to share that Olivia stomach (tummy) doesn't work (didn't EVEN get into the small intestine) and she needs her tubies. Olivia never really had a three or four year old mentality. And as many will attest nor will she have a five-six-seven-etc. which is typical.

Olivia was bound and determined to stick it out, but as soon as she saw her Daddy she wanted to go home with him-I WANTED TO GO HOME WITH HIM-but I stayed and went to the last two stations without David Potts AND My Olivia. I felt so naked without backpack and my two little monkeys.

Sweet that Miss Lemonade (as Olivia named her back in AWANA) asked right away where Olivia was and with it my heart was pierced.

But-

Really-

It is ALL right.

Thursday, June 17, 2004 10:30 PM CDT

Day 4 of VBS!

Olivia overall has enjoyed it completely (I THINK DAVID WAS MADE FOR VBS!) and even though she went NAPLESS and with it pretty pukey-she did great.

She doesn't sit on the sidelines as she did during AWANA's game time; I think she feels safer with a smaller group although her group is the largest! Many little bodies running in every direction, but I keep thinking of Marlin and Nemo. Olivia reminds me too that she CAN.

We spent two hours at the PEDS office. I'm not one to keep track of time, but whoa. Met with a nurse brought in to specifically follow chronic kids. It was a blessing over all and to have her two main PED docs really come in and "touch" Olivia with such depth of kindness touched all of us. The nursing staff-included.

Of course Olivia is the only in the practice on TPN and so I did a little educating and both David and Olivia were in show off mode. Great. Olivia insisted on her pouch being emptied (attention seeker) and added she was still getting used to her new J Tube.

Everyone marveled at how healthy Olivia looked.

Her urine sample did show something so was sent to culture.

As the kids were dusting-using their feather dusters-David's got caught in Olivia's J Tube. Just as a new mother learns the cries of her baby and her needs-I immediately knew it was "TUBE POPPED OUT" cry. So, I grabbed a washcloth and told Olivia to find a place she wanted to put it back in-David saying sorry and I tending to his heart. I let him put the water in the balloon of the new tube and all was well.

But of course she had to tell everyone she met today and tonight how she just wasn't not used to the new J Tube.

Thanks for the special blessing of Miss Kacie in our lives. She gave Olivia special love tonight at VBS.

Thursday, June 17, 2004 8:14 AM CDT

Olivia and I had one of our big talks this morning. She claims that God has all the flowers not me and there are others with white petals. The daisy (in any form) is one of my favorites stemming from my childhood of wild daisies around our pond. Outside our family bedroom the Shasta daisy is in full bloom.

Olivia was surprised that the birds were not stopping by for a drink or a bath this morning. She did say surprised too.

Then went on to say how she wanted a weeping willow tree. By far her most favorite tree. We talked about how willows like lots of water. Then I shared about the stream which flows down Uncle Bill's and Aunt Vangie's mountain and how you can see from a distance where it is because of all the willows. She then wanted me to dig one up and bring it to her front yard. Silly girl. Talked about how the land is protected, etc. She loves to weave the talks.

Again my back is telling me something is wrong.

Today a special PEDS visit to discuss or review Olivia's chart. We'll see what it'll be about. I wish I didn't have to take David. I may see if he can stay out with the nurses. He is still in his phase that Olivia gets all the attention-doesn't have to eat all her food-sort of spiel.

A boy on TPN list got his "GIFT CALL" this morning. He'll be transplanted some time today. Wild. Natalie-Kyle-Jeremy-keeping them in our thoughts and prayers.

Wednesday, June 16, 2004 9:34 PM CDT

David and Olivia absolutely LOVE VBS. Being a "station leader" for Olivia's group (David P's too) I get to see her in action.

She is quick to respond and has enjoyed the recreation games. Funny though how my artist girl has little to do with the crafts set before her. (Art SNOB!:)

Olivia is having such great days but I've found myself in a bit of a Mommy funk. The BIG POOL party is on for Sunday evening and I find that I'm growing anxious about it. David is so excited it just makes me almost sick to my stomach. To hear his exclamations and pure boy joy just rips me in half.

To add to my pain-my back. What in the world? It hit me yesterday and didn't think much of it or was it today? All I know that if I move a certain way I feel like a rod is being shoved into the upper part of my back. Hot showers help, but tonight as I was writing a check to pay for T-shirts it hit me.

It was a long three hours.

Praying that Natalie grows stronger after her line placement today. How I wish I could reach through the phone or this computer to touch both Hope and Natalie.

God knows.

Monday, June 14, 2004 8:39 PM CDT

Dave and the children are about 75 miles out.

3 boxes of TPN could be put away and TPN preparation still in line of duty as well as other things, but I must stop and get it all out.

First night of VBS. I am blessed to be a station leader-meaning I along with other adults keep our group of 3 and 4 year olds together and moving from room to room.

My little friend David is joining us this week. He was adorable and did so well-I experienced another mother's walk tonight. David is not typical just like Olivia isn't nor was Matthew nor many of our other friends. But David looks perfect with THE most crystal blue eyes.

But all is well, because although maybe David did not spit back everything when told-in the end he got it.

Jesus loves you.

Jesus loves YOU Daddy, he told Brian when I dropped him off. Yes, David. YES!

On the way home he said it over and over and when I told him not only does Jesus love you, David-I love you.

With his sweet little David voice said-

I love you TOO Sheila.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I cannot wait to see my own and am interested to see how Olivia will respond especially to David's holding my hand tomorrow night.

I can't wait to see all my little friends again tomorrow night.

Bless the children, Lord.

Sunday, June 13, 2004 8:56 PM CDT

Full awareness will never be completed on this earth yet God's view on certain subjects I never dared to approach have been placed into my family.

Alone I sat on our deck that my husband rebuilt where the blessings of our home contain. There I sat watching the storm roll on by and with it the wind beating the dangling Christmas lights which were never taken away for the next year.

That is us.

I remember the little boy fighting for his life and with it his parents-family-friends await word of news. Kyle is struggling but alive.

Thank you God.

For Natalie life's edge seems so narrow.

God, we pray for mercy.

It all can seem too much-

Then the spider which is wrapping its dinner round and round reminds me that He is in control.

Dave continues on in St Louis staying at his parent's home which is a haven of flowers-birds-live abundant. Dear grandparents and aunts and uncles.

Thank you again, God.

My little boy calls to tell me of his uncle Ken playing catcher and even cousin Nick tossing the ball too. Baseball is in the air around his world.

God help me to recognize and encourage where it is needed.

Hooking up Olivia seems a bit labored tonight, but I'm 5 hours away.

God grant Dave wisdom.

What a glorious visit we all had and so thankful for Elise's willingness to join our family.

For all the people who touch us daily Heavenly Father touch them in this journey.

May they see the Jesus.

The sky in all its grandeur again reminding me that with the depth of pain-sadness of loss life there-the sun sets and in it life continues and the magnitude of the clouds of purples, pinks, blues, and whites-

The sun too shall rise again.

Just as the Son did.

He is there.

He is.

Thursday, June 10, 2004 2:41 PM CDT

Hope's Natalie is holding her own exhibiting her Mama's spirit and fight. Hope may have updated Nat's page.

www.caringbridge.org/ma/natalie

Olivia's line was cleaned OUT with the TPA and the chest x-ray showed nothing mechanical so we whipped in and out of Children's in a whiz.

With Elise packing and Olivia helping we are off to ST. Louis which OLIVIA told EVERYONE she met we were going.

:)
Thank you.

Wednesday, June 9, 2004 8:19 PM CDT

Olivia's line IS concerning and sluggish.

So given the option of Kosairs or Cincinnati Children's a major NO brainer.

Olivia and I will pop up to CCHMC early AM for chest x-ray to be sure the line is where it SHOULD be then off to clinic for TPA. 2ml of medicine (for lack of better wording) which should clean the catheter out and hopefully get things running smoothly again.

The plan as it stands is Dave will take David on to STL and then Elise, Olivia and I will follow on our return from Cincy. Elise of course has plans to see off her dear friend from Spain so she'll not make Cincy with us.

David and Olivia are in HIGH energy excitement. We asked David if he would be all right in missing his first night of VBS so he, Olivia and Daddy-O could stay an extra night David was ALL for it. He is such a Grandma's boy. Grandpa's too, but boy does he love his Grandmas. Elise and I will head back on Sunday so she can make a Monday AM gig at COLLEGE which will afford my first night alone in my house in? Years?

So hoping all goes well as Olivia is pretty distraught in ANY kind of thinking of missing out on ST LOUIS trip.

*!*Still no word from Hope; tried to call her early this AM. Will call and leave my cell number with her.*!*

Wednesday, June 9, 2004 6:50 AM CDT

You can tell it is summer by the places in your yard you are now able to mow after all the spring's rain. Dad had said that yesterday of his yard and I had to think; I can tell it is summer as Olivia no longer can stay outside the whole time.

With her fluids on we headed to Versailles to finish up some gardening, planting pumpkins, sunflowers and to spread the wildflower mix Darla had brought me. It was fun to see such a girlie girl working with her hands and driving the mower. Becca is a good worker but mostly it was nice as she tended to Olivia and allowed me to keep the flow.

When Olivia's fluids were empty and pump beeping she went straight to Papa's bed for me to cath and unhook her. Becca got the fan and Olivia decided HERSELF that she needed to cool off and stay inside with "Little Mordy" as she calls Dad's cockateel. We went in to check on her and told her we'll come get her when it is time to go back to the pond. Dad said she caught him outside a window and told him she would go to the pond when it is time.

Olivia is a cool kid. David too, but he is struggling right now with rights and wrongs especially with his peers. He is doing all right, but overall takes a lot of emotional energy. Olivia has the way about her which she is wiser and older than her years. I sometimes forget she is ONLY 4 and at times during her care or just as she talks she seems so much older. The stuff David sweats over is NOTHING to her. BUT she is a girl and he a boy and thus the old lifelong mystery.

Monday and last night Olivia's line was hard to flush. This is a new avenue for us-and one which is old hat to many, but new here. It could mean that her line is getting clogged or maybe even she is beginning to outgrow it. As minute as it may seem in the scheme of things-it really has me on that edge of no control-of not knowing when. I've come to respect her line and knowing what I know it scares me. I am reminded I'm still a baby in this journey of medical care. I'm so fortunate to have so many other mothers who have been doing far more for a longer time to help me jump the next hurdle. It is so comforting to have Darla close by as well.

I sit her typing and I see our 80 year old neighbor retrieving his mail. He was away last weekend and-after asking of course-we planted flowers in his gardens by his door. He had called and left a message on his return thanking us, but last night I saw him out and ran to him PJs and all. (I love where we live-everyone is WHO they are) There Mr. Bob clapped his hands with his garden gloves and held his arms out bellowing my name! Never had I seen him so animated nor happy. He preceded to exclaim his thanks abundantly and share that he finally "made it" to 80 which took place on his time away.

I could not help but stop and think of little Natalie when I caught a beautiful toad. Every child should get to see a toad-frog-butterfly-lightening bug-the moon-feel the sun. I kept thinking of her life struggle. I know that after our stop by to see Darla-there was a element of Matthew all around me yesterday. I know Becca felt him too.

But there is such life teeming and streaming around which helps keep the flow pressing.

Monday Miss Kacie (Kaci?) from orchestra came to play duets. I've not played such level of music with someone else in years. The kids were subdued by it and even Olivia told me yesterday that while Becca and I were whistling together it sounded like Miss Kacie and me playing the flute again. I love how homeschooling doesn't always mean they are sitting at a desk-nor on a field trip, but something as simple as a mother and a friend playing music together. We even practiced music for the God and Country program coming up. David was our sound guy working the CD player.

The morning is darkening which means I'll not get out to mow, but that is all right. Its all right-Its all right-Its ALL right.

Tuesday, June 8, 2004 8:34 AM CDT

Olivia is doing relatively well, still a bit on the higher output edge, but all right.

I'm speechless. It is so hard to be so far away and not able to be hands in the here and now for Hope.

With Matthew I could drive to see him be with him, touch him be someone to him.

Off to my Dad's to love on him.

Monday, June 7, 2004 8:58 AM CDT

The beat is pounding away.

If you choose to become close with people who are chronically ill with life threatening illnesses you always know of someone in a crisis. It is a way of life-a fact.

I at times do feel a bit wary of becoming close to new people but with Hope it was different.

She has never made me feel that Natalie's issues are greater nor my concerns petty. Hope is bright and intuitive and caring.

If you think of us today, I ask that you remember her Natalie in prayer. Add Hope into the prayer too while you are at it.

www.caringbridge.org/ma/natalie

Natalie too has Pseudo Obstruction but it secondary to a Mitochondrial Disease.

God's mercy.

Grace.

Tender mercies.

Friday, June 4, 2004 6:58 PM CDT

Full naps and 1Liter of replacement fluids for Olivia and she really is starting to look better.

Friday, June 4, 2004 0:30 AM CDT

June?

I still cannot commit to the fact that Olivia is not up to her 100%. Is it hydration? Bacterial Overgrowth? Obstruction?

Up and at 'em to Papa's for a blue and sunny day.

Both kids are learning so much. They are learning too how to pull chains and push buttons. David would not give Olivia her water so I had to pull over.

David not an emotion hinted, but Olivia with tears welled I even told her to blink and there fell so many down the cheeks of my daughter.

David is entering a hard place; Olivia gets to have all the attention, Olivia always gets this or that. Olivia doesn't have to eat all her food, etc. Trials.

We've held back David in fear of Olivia being hurt by the fact of NOT swimming or not bathing every time, etc.

Seeing the need to shift a bit.

Maybe swim lessons for David and horseback for them both.

Thinking outloud and will pose this somewhat of a problem to the "group" and see what bites I get. There are some remarkable families who have been through so much and could write the book.

I sometimes wish we had several children so David would not feel so left out nor Olivia.

It is either all or nothing.

Wednesday, June 2, 2004 9:17 PM CDT

In thinking of what it means to have no motility I was drawn to the conversation between Miss Emily, Olivia and me last night. Emily was so intrigued by Olivia's ostomy pouch and even touched Olivia's stoma. Kept wanting to see the stool come out and or see the gas pass. Olivia loved it and with that moment Olivia I think found her first true friend.

Most folks steer clear of the "poopoo pouch". Olivia and I told Emily that the red skin she sees is her small intestine the same type of tissue or skin that is found in the mouth.

And with that we brought out a human physiology book I got from a friend years ago. Emily of course educated us on the liver.

It looks as if Olivia's decent season is changing. She hasn't looked as well and yesterday and today required replacement fluids. Her stool is a funky green and watery.

BUT-having said that I am reeling my children back into the fold. A late night last night I did brave taking them out in public AND to the library. We each reclaimed a card after my thinking I had my wallet stolen a few months back. Each picked out their alloted number of books, and I found some more _Littles_ books. One is called _Littles and the BIG Storm_ which of course we are reading first. Also, several on the beaver. Papa and the beaver battle is still raging and hope to get a glimpse tomorrow. So library was a good thing and signed the kids up for some sort of reading thing. David loves contests, but I just want to get into the disciplined mode again of reading regularly to them.

Then off to orchestra where they night before took toll in the middle of practice as they sat in the back on the floor. Olivia didn't want to give up the pen David so had to have or was it David didn't want to allow Olivia the priviledge of the pen? David knew the boundaries were crossed, but Olivia was on edge meltdown and brought attention to the situation. Dave came to the rescue taking them both to worship so I could play in peace.

FINALLY I braved the overnight catheter for collecting Olivia's urine. Don't know why it always takes me so long to try things; I guess I have to be reminded why we so need it and tonight is one of those nights I could use a good solid 6 hours.

The moon was fantastic tonight smiling as I walked and the bats as evening butterflies.

Wednesday, June 2, 2004 10:32 AM CDT

One of the most beautiful rainbows ever was seen off our deck last night after yet another huge storm went through our area.

As soon as it was over our passing by visitors, the Curry family stopped in for an overnighter on their way to visit family in the North.

How I love teenagers! Not a shy bone! John the oldest the scientific and lover of books, Andy the artist type (even noticed collection of acorns and commented:), nurturing Emily with her love attached to Olivia and Kyle master of disguises enjoying being policeofficer to doctor all in one night. Just a delight visit and great to connect with yet another who loves to teach and be with their own children. I met Shawn on GIFTSfromHeaven a group supporting those who have had or going to have liver, bowel, kidney, etc. transplantation. It is also a place for folks with chronic issues. Pictures to follow later tonight.

Kids to bed late which makes me SCARED to take them in public.

Dear Marsha's Dad finally gave up his fight and has joined Matthew and Sarah in Heaven. Please remember her and her family. Marsha has been one of my biggest cheerleaders and surprise blessings from this journey.

Monday, May 31, 2004 9:13 PM CDT

Watching a mother arrange and rearrange the flowers at her son's gravesite is a sobering experience.

The giant tulip tree was still shedding clusters of leaves from its beating the night before, but the ferns still marched in their straight line as they folded under the touch-me-nots. Redbud smiled as Olivia would have shining a heartshaped grin.

The cemetery is something so naturally set in a canopy of green but Matthew's shell rests in the sun.

Dave kept David and Olivia so I could go alone with Darla.

Our county was hit very hard with the storm last night and we lost a tree-well our neighbors did but I feel like we did as well. They had it cut up before we could even say boo this morning. And when I looked out the window there the CHICKEN PEN was WIDE open and the HENS GONE!

I tore through the house as I do when there is an emergency with the kids following behind. We all stood out back and there was Miss Goldie II (not yet ready for us to have Miss Goldie III) at the end of the steps I'd made going down the hill. Talking hen talk I gathered with little work, but still no Miss Sweetie. We've come to not fret too much over our hens partly because they are birds and like to roost at night and we have an endless supply at Papa's. David was ready to call him and request 2 more hens as he thinks he wants to open an egg selling business.

So Daddy saw Miss Sweetie this evening thus reuniting our two feathered girls.

Cadbury on the other hand is my rebelious one. He has been kicking his cage open and smiling while he does it. I do think Matthew is laughing me.

But we again enjoyed the sunshine and wind up here on our hill; glad to have another day of just being alive.

Sunday, May 30, 2004 6:54 PM CDT

More storms hit today and more to come.

WIld weather.

David let his toad loose tonight.

Olivia's low on urine and it is dark. Sure not sure.

May take a sample to the lab tomorrow.

Prayers for sweet Kyle who is fighting hard for his life.

Saturday, May 29, 2004 9:24 PM CDT

"Am I the most beautiful gill in the world, Mama?"

"I do NOT like my tubies and why do I have a hole between my teeth?"

"When my JTUBE POPS out you can see my small intestine."

Some old standards popping up 'round here lately.

Olivia had me a bit concerned Friday with her stool output being a rather dark green then turning to a darker brown. New stuff for her, but at the end of the day EVEN a LATE hookup on her TPN tonight and her urine looked SO good and her lips as well. She has not required extra hydration except for one day in a couple-or maybe it has been several? Time to get her numbers out and look them over; clinic isn't until July 1st.

Her energy has been amazing and I keep looking and checking thinking I'll sunken eyes and tired girl but I don't. She is NOT taking naps either. Just as our Pastor said we are already experiencing our miracle. I do believe it.

Talked with the pharmacist at Olivia's homecare company. I usually wait about 2 weeks after he has called to give him an update. Now if she were in a crisis it would be different, but I tend to stay away from the medical scene when and while I can. I know I must drive them nuts.

The conversation dealt with updating medication list; all the same. Weight and height, catheter care-if there was something wrong with THAT puppy you can bet EVERYONE is going to hear about it. But he asked about Olivia's doctors in hopes of their presenting at the next conference. I would love that. I have such respect for both. One saved my daughter's life and the other continues to do so. He also commended Dr. K's talk about transplantation remarking that NO one wants to hear that sort of talk in the PICU. It is always so refreshing to talk to folks who get that TPN is not a death sentence. Yes, bacterial overgrowth is a biggie, liver and bone issues even a bigger biggie and then catheter care as well. But things have come so far and even though there is NOT a cure for Pseudo Obstruction nor is there whole LOT in that avenue but to go to transplant-there is much being done for TPN.

So we plug along; I have such a new vision for the future.

I see Olivia growing despite her illness and her "plumbing appliances" and with her readiness for reading I see this Fall as a very exciting time. We've slowed down on "SCHOOL" and have just "LIVED" and amazingly enough the kids are still growing and learning. David is JUST now Kindergarten age and to be honest I really just want to follow his flow in learning. It isn't a race. I'm sure there are 5 year olds out there who have no idea what a small bowel is, or a catheter or what sterile means or can draw up 5cc of water and even know that organs are transplanted. And that is just the beginning.

But I also see Dave and me. Striving to accomplish goals together and separately serving God and raising our children and when the sun sets; we can be thankful again for another day we had not just with Olivia, but with David and each other and the many we so love.

Friday, May 28, 2004 8:04 AM CDT

After Wednesday's big adventure and low energy on Thursday little was done other than David and Olivia reaquainting after David's stay with Papa. Elise and Matthew B. came over to break up the day as well.

Miss Kacie my sweet blessing at orchestra who plays the flute and loves classical music and just not your ordinary kid (I love extraordinary kids) invited me weeks ago to her final band concert of the year.

All day was left to get ready for this event and in the very last minutes; Elise enjoying a game of tiles with David and Olivia played in their own world I didn't have the heart to break it up so left them here. THANK GOD!

Had directions via interstate so I opted to go that way there and then on the way back explore the backroads. As I drove the sky was dark and once again lightening cracked across the horizon and vertically. I didn't think anything of it as it has been the norm here for what, 3 days now?

Found the school a SMALL country town and the folks were dear. As the 6th grade band began to play I hear an older man say it was time for our daily thunderstorm. After 2 of the 3 scheduled choir songs the band director (who was a HOOT) stopped the concert and advised everyone to get into the hallway as a tornado was spotted and heading our way.

GULP! Immediately I felt my heart just ACHE for my children but then Kacie's Mom and I had a chance to chat. SHE IS A MEDICAL RESEARCHER at U of L! Can ANYONE believe that one? Kacie now standing with us and I'm drooling over her brand new flute (silver-that feels and sounds like melted chocolate in tone when played.) and holding off and on for her as she got drinks. She was so excited to have me there; dear dear girl. AND she had a SOLO in BOLERO. Time passed film crew was there interviewing band director, hallway getting steamy hot, tears here and there, and we headed to a window. It looked pretty bad still with little wind and rain. The concert called off; Kacie walked me out to my truck under an umbrella and profusly apolgizing for bringing me out here for nothing. AH, but it was for nothing. It was delightful time.

But as soon as I got back into the truck and turned onto the road I saw what happens with 4 inch rainfall in 1 hour does to a small street. The streets were flooding and as I head up the hill I stopped at a gas station before getting back on I-65. A young kid and a woman my age working both seemed unaffected (except the kid when we were talking alone) but it was clear it was not safe to drive yet. Wind-rain-lightening-TORNADO...didn't see one last night. Two old country men came in and we all started the talk of what was going on where and I grabbed one of the Indiana maps (I LOVE MAPS) trying to figure where all these places were. As it grew calmer I hopped back into the truck after saying my goodbyes to my new friends and began yet another journey. Found a station which was giving updates and now there was a TORNAdo WARNING for FLOYD COUNTY! WE live in FLOYD COUNTY! I could NOT believe this was happening.

I decided I would not go straight home but try to make it to Brian and Kim's. Then started to think about Darla and then Laura as I know they were gonna get hit and wondered how Cheryl was taking it and ELISE! Oh my! SO thankful I had NOT brought her OUT into this! OH MY! NOT to even mention again my babies.

Never before had I been out to Henryville nor had I taken the exit off to Sellersburg and found I was going the WRONG direction! I was heading right into the heart again! Thankfully too, I had Dave's truck and once I got into to Sellersburg with the winds pulling the truck up I hid behind another under an overpass for safety. I was NOT going to move until the radio said it was clear a bit.

As I drove past Kim and Brian's road I knew I could make the extra 5 minutes up our hill and did.

There Dave had D and O in the basement having a hurricane party (TORNADO!) with candles. Olivia was dancing around happy and excited where as my David boy was horrified. Once in bed I held him for a while and let him say all he needed to.

He was so concerned for Papa now, as "Papa can't walk very fast" and said we needed to watch Storm Stories more so we'll know exactly what to do. He said he was very worried for me. He said he was too young to not have a mama. Immediately I thought of Theresa, Zoe and Ingrid and Sarah. I told him that God would not give him anything too big to deal with.

No electricity for 6-7 hours meant a concern for TPN, but all is well. SO thankful Olivia didn't have any medical issues last night. Dave really did a great job of not alerting the kids to my crisis.

So thankful to hold my kids again and to kiss my husband.

Wednesday, May 26, 2004 11:07 PM CDT

Rain sheets of it; wild day with concerns for many.

Kyle, Natalie, Hannah, Anne's Sam, Kim's Sam, Parker, Jeremy, Stacey, Allison and dear Tio. Coming home to add Malisa as well.

Time spent with Darla was clearly a gift today. Visting Matthew's school and Darla handing out her thank-you cards to the special folks who loved Matthew and saw him in situations we never did. Wild.

Olivia obstructed today. The intestional kind. Over a liter of gastro fluid collecting into her bag in a short time not to mention all in the Jbag. Giving her a choice she decided fluids to be hooked up right there in Matthew's school. Wild.

I was not mentally prepared for such a medical day with Olivia and almost felt angered by it; not at her. Hard to say and to admit, but it is done. Wild.

Although she obviously was having a flare her abdomen tonight looks wonderful. No distention at all. Darla and I both kept her well vented. Lots of vomiting today as well and drinking well over a gallon in water all of course flowing into her Gbag. Wild.

Today was an emotional day for Darla to revisit Matthew's school and I was so concerned that all of Olivia's pump sounds and all it takes to keep her going would put her into a funk; almost to the point that I was so UNaware of what was going on with her as I was so wrapped up into Olivia's world of hydration and yeast control. Wild.

Ilex and stomapowder really did help get yeast under control around her G and J and belly and chest. THANK YOU HEIDI! WILD!

David home after major adventures with his Papa; I can't even begin to say how thankful I am to have Dad to give extra one on one love and attention to the one who made me a mother. Wild.

Hope and Love.

Wild.

Tuesday, May 25, 2004 9:59 PM CDT

While waiting to be called back into a room yesterday Olivia and I found a book on "wildlife". In it explained the food chain. She was amazed and after I read to her she spit it ALL back to me. And so today as we puttered around she asked if an egg would be in a food chain.

Olivia's art work is unique in that it is almost like another language. As she works she tells a story as in the daddy seahorse and how all the baby seahorses were in buckets and the daddy had to save them. Then today she painted and all the colors represented her family members. I was yellow (usually I'm orange), she was red, David purple and well, Daddy got green this time. She and I chattered all day long.

Whew!

But the kicker is she recognized a different bird chirp and jumped to the chance to help identify it. We weeded which she really has down. Fun.

Meanwhile, David had a full day yesterday with Papa-going to the pond to clear out the beaver's handiwork then to McD's playground for hours, then back to the pond using a flashlight where they spied the beaver's TAIL as he was escaping! He had ALREADY plugged up the culvert. I love it.

Today I got a call from Cincinnati. Dad took David to see the Reds play. What a LIFE! My boy WILL never want to come home. The good part is that Dad is a good grandpa but also is a disciplinarian; he is a retired school teacher - elementary style.

THEN-I got a box from Tia Vangie! Olivia and I opened it and I tried on the clothes-awesome stuff.

Olivia asked me if I was happy.

Yes, Olivia elated.

Monday, May 24, 2004 8:17 PM CDT

Days.

Smiles yesterday were brightest I've seen in ages.

At the AWANA picnic the kids each fished for a bit then on to the slides and then swings. Over and over and back and forth.

Olivia looked better hydrated than David.

With the car seat next to me David and I headed North to Papa's. Walking back to the pond to see the beaver's newest endeavor I spied a flower I met while in New Mexico; not the exact of course maybe a distant cousin but a friend nonetheless. David and I collected many flowers to examine but he found his place in the water mucking it up enjoying his youth.

Took off to dine then Dad took us on one of his drives checking out his new backroads; we saw a quail!

On over to visit Darla my heart felt so twisted not painful but sorrowful as I knew Matthew would not be there. Like two teenaged girls we giggled yet read Matthew's writings-laughing again-celebrating him and watching a video of him. Missing Matthew. He gave me a sister in Darla.

Today was the race of all races to Cincinnati. What WAS I thinking? 10AM clinic with a 2 HOUR drive?

Dr. R. was gracious as he explained the bladder to me and after sharing the amounts of urine we collect during Olivia's TPN he adamently said night time catheter! I could not believe my ears! So, I was shown HOW to place it, which is VERY simliar to placing a G or a J tube all the while Olivia was having a blast opening up with the nurse. We also discussed Olivia's taking over her own cathing during the day and basically we had been starting the process naturally, by having her gather the supplies, and holding it when in place. The next step will be to allow her to take it out then finally placing it. Exciting!

We were blessed to have a moment with Mr. Ron. As he walked toward us I knew we knew him. He faithfully visited Olivia during her big surgery stay and has remained in contact with us. Dear man was there for something to do with those who volunteer there. Tender heart.

I think everyone should take a basic drawing course and volunteer at a Children's Hospital.

David MADE me a mother but Olivia taught me HOW to be a mother. Thank you Stefanie for putting into words I so needed. www.caringbridge.org/md/alycia

SO basically this was an ENORMOUS day-NO more WILD cathing duties (at least not for now).

(ALLISON~JEREMY~SEAN~NATALIE~MIRANDA~TPNFRIENDS)

Sunday, May 23, 2004 1:26 AM CDT

David seems to be coming out of whatever it was that had him down. It was weird to have HIM quiet and low energy. He would just sit and stare; I know he didn't feel well. While Daddy and Olivia went to Miss Dee's retirement party he and I had pizza and watched Babe. I think more than anything he just wanted to be close and really seemed to pop over to the other side.

Dave is out of sorts now, tired and just not himself. Hoping a good sleep and major down time on Sunday will get him girded for next week.

Olivia was such a flower tonight. Something about her sparks such an energy of life. Her zest for living is contagious. Tonight after her "party time" when I asked her what was there she said "FOOD! GOOD FOOD! I so LOVE food! Then went on to tell me about a few people there. Later she was singing in a strange voice, "I can see my small intestine when my J-tube pops out." She had such an impish grin. She is SO particular over how they are pinned up and if they even dangle for one millisecond she is fearful they'll pop out; she is getting better at it and even kids around about it.

While Daddy fixed the washer (sigh of relief!)with David Olivia and I went grocery shopping. She SO loves the store with the "baby carts" and by the end of the experience it is FULL. It is a great one on one time for learning about so many things but also about foods. This is our second time and I now have an offical helper. Of course she gets all sorts of "AWWWWWWWWWWWW" remarks. She is SUCH a busterette!

Sunday is the AWANA picnic at a local park. The kids can fish and swing, etc. Thinking of taking their bikes as well. I'll take David straight up to Papa's afterward; David is SO looking forward to this time with Papa. I am looking forward to the drive with David and seeing Dad. It sounds like he has a few things to show us. One being Mr. Beaver's handiwork at his pond! Hope to see the Lindenmayer's on my way home as well.

BUT Monday morning will hit hard with an 8 AM departure to Cincinnati for urology. Never again will I do THAT.

Hoping to discuss UTI, cathing procedure, antibiotics, Olivia's uro in general. The doctor we are seeing was who we saw initially so hoping to get established there as O's motility doctor said he sees all the Pseudo Obstruction kiddos.

Would LOVE to be home at a decent time Monday so maybe Olivia and I can get a start on Tuesday's stuff.

Time to get ready for summer season of school although really we've not done too much "table school".

I love how the kids have been naturally learning; they collected all the many types of flowers from the gardens and in doing so last night while I had my nose in my wildflower book he said, "That is our bush by the door!" He identified it by its flower! NOW that got my heart a pounding!

Friday, May 21, 2004 10:49 PM CDT

Friday was not a total bust.

After Dave arrived home I escaped into the humidity to check on the seedlings and transplants. All was well and a little drink for Matthew's lilac and others while I walked Lee Drive.

There upon I came across the neighbor girls making a secret hideout in the forcythia bush in their yard. They always delight me with their constant chatter; one being the girlie girl and the other such a tomboy!

I came back to our front door to have Olivia join me as she really hadn't been out or moved much to speak today. She immediately comes running with her chubby cheeks bouncing in her very "busterette gonna make you smile all the while" personification. David mustered some energy to walk as well and they ended up under the forcythia as well.

Neighbor Ed was testing his hot air balloon! What a treat! Dave took the kiddos over and I joined them after some quiet alone. There Dave and I got to help put the balloon away.

Night had swept upon us so the kids with Jennifer and Sarah and I walked home the long way. Sarah turning cart wheel after cartwheel with Olivia saying "I don't know HOW to do THAT yet" and David trudging along tired for sure.

While Olivia played in her room I rested on her bed listening to her singing her imagination songs all the while. She is such a treat.

She has this thing lately when she first wakes up to talk either of God's love or how Satan is a liar and a deceiver.

David is still under the weather. Not sure what is going on there; hoping he snaps back as we have a "party" FOR Miss Dee tomorrow night. If not, Daddy and Olivia will have another party date.

Want to add little Sammy to my concern list of prayer; and especially for his Mama- Kim.

Friday, May 21, 2004 9:37 AM CDT

Many of the TPNfolks are really hurting and in need right now. There are so many children who are struggling: Jeremy, Hannah, Natalie, Sam, Sean, Miranda, and I know there are even others but I've not kept up with all the emails and I'm sure there are new folks on the list. Forgive me. I've struggled with the support group idea, but feel led to be more of a one on one supporter. My dear friends are so important whether close or far.

I know that Allison could use extra prayers right now as well. www.caringbridge.org/ky/allison I so hope that by forgoing Oley Conference this summer we can visit Miss A. She has been such a supportive dear. What a SAINT of GOD! I always love JUST sitting next to her. Blessing.

Got an email from my Step-Dad saying his Aunt Velma is in her last hours. She is 95! She has prayed for us over the last few years and is praying constantly outloud now. It was said that she is praying for our country and covered Olivia twice with her prayers yesterday. We had the priviledge of her laying her hands on Olivia last summer while visiting.

My David has a fever; seems so petty in the scheme of things but it is never taken lightly in this house. If Olivia has the same fever off to Cincy we go.

So, our day to Matthew's gravesite is postponed for now; has me a bit blue but talking to Darla I feel silly for even being a bit blue. Hoping to set up my creative studio space again in the basement. To live and redeem the day.

Thinking of all those hurting...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
If you want your children to turn out well, spend twice as much time with them, and half as much money.

Wednesday, May 19, 2004 10:29 PM CDT

Streaming down my face.

Tears.

How could He love one like me?

The children in their blue vests march in first single file and I see the little girl with a pinkish red ribbon pulling back her hair. Olivia marched.

David knew to look for me and there he was the brown eyed boy found me.

Worshiping the One who created us all tears streaming down my face.

After months of anxiety and prayer, we made it.

As Olivia came down the steps I held my breath as she is her mother's daughter. She was true to form and tripped as she came to me.

You are the Famous One Famous One...

Someone asked me the other day how I do "it"?

Anything GOOD which I do comes from the Father and all else is my weak flesh.

God knows.

Thankfully.

Tuesday, May 18, 2004 1:37 PM CDT

Time to stop.

Sit.

A good weekend; kids taking all of me and I receiving all they have to give.

Today with its slight breeze and sun I'm determined to get all the seeds and plants and transplantings in the ground. (I say this everyday I have to garden) Gardening has become my therapy my creative outlet which has no boundaries.

David and Olivia playing the entire time in either their sandbox or newly turned up soil or anywhere but inside. David announced that HE changed Olivia's J-pillow and I've not heard a peep out of them. If someone were to drive by they would see a brother and a sister rolling in the grass.

That is what I see too.

Thanks to Auntie Joyce for the seeds and the two tomato plants; how we'll cherish them.

Matthew's bush is visible from every window. Grow lilac grow.

Get better, Sean.

As I dig I pray.

Monday, May 17, 2004 7:55 PM CDT

"Well, looks like Pediatric Surgery got a hold of Olivia before me" he said looking at Olivia's tubes. Dr. C. was straightfoward and asked "What can I do for you?"

"Yes and no" Looking at the xray it is evident that she was being held down with her arms over her and our spine is something that moves which really didn't give a true picture. Yes, should have had a "standing" xray but after those two xrays Olivia had made it clear (back in March) she was NOT going to be cooperative and all the picture taking came to a halt.

So we'll go back in 9 months at which time Olivia WILL stand up for a xray. No biggie; easy. We'll stop by next Monday after urology and see if the techs will show her what to expect.

Miss Olivia has a slight "squiggle" as Dr. C. dictated right then and there in front of us so I could correct him if need be. Pretty impressive how he can summarize Olivia in such medical terms in a few moments.

David in his Crater Lake cap, jeans and tied dyed purple t-shirt and his favorite footware-goulashes. He too was concerned this morning as I unhooked Olivia from her TPN and we reviewed over the day ahead. Precious boy.

Olivia was relieved that Dr. Kocoshis was still her doctor; she isn't ready to trade him yet.

Sunday, May 16, 2004 10:34 PM CDT

Cincinnati ZOO!

and

BOTANICAL GARDENS!

The kids were fired up and I was a bit anxious seeing that there WAS no air in the double stroller's tires and Olivia woke up with a "secret". . .which means she didn't feel well. Putting her Jtube to drain about 500cc came out but little out her Gtube so it looked like a "pseudo obstruction" without too much bother. Normally I would have hooked her up to hydration but guess what? I FORGOT FLUIDS! She has not needed them since my return from NM that I completely forgot BUT she STILL looked so good after a 3 hour nap. Whew~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

So in the AM the kids and I hit the zoo, which brought back so many memories and joy to watch their responses.

After naps we, Grandma included, drove to one of my favorite hangouts Ohio Avenue Park. There were a few others there and the kids had a blast. We saw the city view before heading down to Ludlow's Gaslight District. There one can have the feel of a small Greenwich Village type gig. We had pizza and sundaes in a favorite spot.

We took a short drive around checking out all my stomps increasing my desire to get on the University's grounds to see all the changes.

BUT tomorrow is back to medical reality. This will be our first visit with Ortho. Although Olivia's xrays came back saying NO scoliosis I am still a bit nervous there will be a glitch somewhere. When we drove past the hospital Olivia was relieved that it wasn't a Cincinnati Children's Day. Me too, Olivia.

While at the zoo we had some looker ons and a couple gave us American flag pins as well as some biker patch for David! My backpack spilled out with pouches-spare tubes falling out! What a scene! Olivia insisted on wearing a T-shirt and shorts and most of the time SOMETHING was visable (no matter HOW long the shirt) so she always keeps folks wondering and thinking I'm sure. Her words are always a comfort. While riding the zoo train she was so "done" and had her head on me but was so concerned that David didn't have his ticket. What a little mother hen.

It gives me great courage (as the Lion would say) to GET out there and just GO and DO knowing of fellow friends. . .struggling and TRIUMPHING to do the same.

Saturday, May 15, 2004 9:25 PM CDT

After rounding ourselves and all our paraphanelia we hit the misty day and the rained roads.

I love taking rides and with it talking to the co-driver. Mom and I explored so many places and people; I'm so convinced God gave me not just a mother, but a sister and a best friend.

David and Olivia emersed into their world per usual and with no medical dramas-all is well.

Olivia did however dump a bit and after dropping Mom to her Beloved Rosella and whomever she can capture for the day we headed over to MY Angie. Noah and Noel my blue eyed dears picked up right where they had left off with their visit to us a while back. It was great to see Angie's gardens and how much better I'm getting at identifying! :)

Olivia was right with them Noah and David and O let Noah give her hugs.

I asked David if he is aware that Noah has tubies like Olivia when they play (because they surely DO play like boys DO play) and he said only when I give him a hug do I remember and then I think; how I love him. YES! So awesome for Olivia to BE AROUND Noah and all his enery and boyness about life. It gives a new bounce into Olivia's step.

Vernon Manor our favorite hang out here in Cincinnati which offers us Old Cincinnati flavor and many memories of my time spent in Clifton at the University. It is strange to be a stranger in an environment I claimed as my own.

But no trip is without any kind of mishap or situation like tonight the TPN tubing popped out and spilled all over the floor but thankfully I have an extra bag with me. Olivia was sure it was her fault.

So tonight we'll rest; nothing but a possible zoo trip (I told them San Diego was one of the best zoos and Cincinnati as well and when we called Daddy Olivia announced that we were going to the San Diego Zoo tomorrow; poor Dave!:) or Newport Aquarium if still rainy. Hoping for some time at the Ohio River Cincinnati style or maybe Eden Park.

Friday, May 14, 2004 11:09 PM CDT

A "down day" as we call it 'round here; although the fog and rain made it possible David and Olivia kept the flow of their imaginations busy. Sometimes I want to interrupt their play thinking there is a conflict but if I listen carefully it is only complete drama.

David finished gluing and hammering things and we went out and did yard work. I love that we can both go out and do our own thing and say not a word all that is required. I'm finding at just before 6 years I am already befuddled by his ways. I look at his olive color and brown eyes as wide as his imagination and there is something troubling, but what? Tell me David.

He and Olivia gone from the house while Mom and I busily packed for our upcoming jaunt to Cincinnati where she'll visit with her dearest of dears and I will hopefully catch my Angie and hug her Noah and Noel for a bit; check out my favorite zoo and then on to O's first ORTHO appt on Monday.

They each had their Easter nets and were collecting flowers from all around the yard. I peeked out the window to hear Olivia say; is it a wasp? They laid their wares out onto the table and each made several nosegays (smile) which are dispersed around the house. They took specimens from anything with flowers. I whinsed to see certain flowers, but we did get to have a mini botany session.

One mile of bike riding was the criteria for PE today and they did that and some weight work as well. Olivia's legs look fuller and as I marched behind her AND I allowed myself to imagine her the same but without distention ever. . .to continue with her light days of prancing and pure happiness. WHERE IS THE FUTURE?

Picked out my Matthew bush a liliac which should grow to tower any man. I will cherish it as I did and do him.

Thursday, May 13, 2004 9:28 PM CDT

Balance.

What a treat to visit Elise in her ELEMENT (she is probably by far the coolest kid at Floyd Central High and not cool by today's standards. . .she doesn't wear clothes which put her body on exhibition but her eyes light up any room). The "O Team" all dressed in our thematic red shirt of sorts found our way to the attendance office only to have been expected (so Elise!). Auntie Midge in charge of digital stills and Grandma the video; David and Olivia with big eyes at all the lockers and anticipation. Elise got out of her 2nd bell and we had time to visit prior which she admitted that she was planning on "winging" it...TOO FUNNY!

We were the first to arrive with Elise at the podium and Olivia perched on the stool next to her babysitter it looked as though Olivia was up for auction. She took her little kittycat with her and had no fear AT ALL about her visibility even with all the students arriving.

It was a riot as Elise said her teacher had corrected other students on their presentations, but she knew SHE was save in that the teacher knew nothing and could not correct her.

I was very impressed by the questions her classmates had afterwards. Transplant, insurance, normal illnesses, will Olivia always have tubes, how old was she, is it something you are born with or acquired, etc.

I LOVED it. I loved the opportunity.

David on the other hand is in his funk of Olivia getting all the attention. There has been a cloud hanging over him for a while now nothing a some good Mama time can't fix for now. Mom and I plan to make all over him Wednesday before the AWANA awards as he did earn his review patch and will be getting a ribbon. Olivia will too, but going to make it a big show for the boy; he worked very hard and still not even 6.

Olivia is doing so well I can't even begin to explain how that feels. She didn't have any fluids or Jfeeds this afternoon and her urine output looked SO good; her energy is never ending and she is acting so typical. She is at her best spiritually, physically and emotionally. Tonight while I prayed with them she prayed for my face to stop hurting and for Daddy to understand Mommy's ideas. What a girl! David sang his prayer my little music man.

Looked like MY fibroids have not grown much and neither the cysts, but will have the conclusive report next week.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
. . .an arm is just an arm til it's wrapped 'round a shoulder. . .

Iris DeMent

Wednesday, May 12, 2004 3:55 PM CDT

With Auntie Midge here time has been spent planning a year away event. If I could only transport Olivia's season right now to then. If only.

David went with me to run an errand. Listening to Gordon Lightfoot's "Pony Man" the imagery taking us into our own quiet place all the while holding hands. I love to hold hands.

Tomorrow will be interesting.

Elise's research paper on Pseudo Obstruction will become a presentation. Thirty seniors! Olivia has asked for ME to lift her shirt to show her tubies. This will be our "first" chance to educate on a group level.

A couple of days ago we were outside and our neighbor kiddos stopped by on their scooters. Sarah and Jennifer (2nd and 4th grade) have seen Olivia's tubies after Olivia badgering me to show them a couple of months ago, but Eddie (7th grader) had not yet. For some reason Olivia just had on a LONG t-shirt and was not allowed to show. She ran inside and when she came back out BURST into tears! She had gone in to put on shorts so she could lift her shirt to show Eddie her tubies. She was devasted that she didn't get to show him. Whoa.

My emotions seem to be leveled; I think Dave saying that he would gladly send me back to New Mexico in 6 MONTHS really aided the whole heart matter, plus talking with Miss Jo this AM. I've been feeling somewhat detached and feeling guilty for needing a little Sheila space in which I could grow in the directions God intended.

As my Auntie V said this day (could NOT stand NOT hearing their voices) when I called, Dave is such a loving man.

Now to get into my "garden" and start planting and see the rewards.

I really thank Vangie and Bill for plowing the field and for those of you who have encouraged my planting and remind me to water along the way may your gardens grow as well.

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Wednesday, May 12, 2004 0:18 AM CDT

The days continue and Olivia's Pseudo Obstruction has not truly presented itself in several weeks which can be so deceivingly hopeful!

Her abdomen is the softest and flatest it has been really since her partial colectomy two years ago. Her energy is great and overall I'm so pleased to be walking these days with her.

I on the other hand have been experiencing lots of tears; I so miss my Tia and Tio far from me now. I've shared with a few folks some parts of my trip and those I spoke with today like my Dad, Kim and Mom got to hear my tears but with my talk with Dave I immediately felt peace as he said he had NO problem with my going out again within the next several months!

To understand this trip there is some insight needed. It was the weekend of an artist studio tour which my Aunt Vangie is a part. It is when around 40 artists in their area show their work out of their "studio-home". Tia's watercolors are deliciously full of deep color. I was able to see other's works (thanks to Tia) and meet her fun friends.

So the few days were nestled into such a festivity but it all had such a natural flow.

I got to "do" anything I wanted floating between my gracious hosts and receiving such intense love with concern and care. FREEDOM!

Vangie and I explored into her past art into her present and she gave me watercolor demonstration as well as insight to her work. I remember as a kid delving into her jewelry and was pleased that we did that this time! Have I said how proud I am of her?

Special walks and a good hike for both Tio and me. I loved hearing all his stories of his life (like looking into Tia's portfolio!). He was so patient with me as I asked what everything was twice over! Next time I WILL have his book as my guide book. Just a few months and his 3rd book will be out and with Vangie's illustrations!

Cool-way cool.

Art, music, natural things...all that was missing was church BUT Tia took me to see the memorial gardens at her church and there I saw the plaque with my Grandparent's names.

Not only did I get to hear live music but perform. (WINK!) To see the glow from both Vangie and Bill was worth it all.

I felt fed, restored. I realized that I HAVE to be me still. Performing music, making art, learning...learning...and teaching, yes, but to have the time separate from being SheMom.

I'm not doing the visit (nor my aunt and uncle) justice, mostly it was so priceless to feel such love and FREEDOM!

Period.

Monday, May 10, 2004 10:41 AM CDT

Olivia looks absolutely great and David still struggling with the changes taking place within him as well as his Mommy.

Dave DID rise to the occasion as I knew he would and could. Time away was good for ALL of us. . .

I feel a newfounded freedom which in my state of mind right now is so needed.

My visit with Bill and Vangie (yes, my aunt and uncle but too, my dear friends) was incredible. Love, talks, great ART (more on that), music...nature wildflower walking and hiking...with one who can name it all. I felt like I was away for a month with all that I experienced at such fantastic levels. That out of body thing-it could not have been Sheila? Yes...it was. I found parts of me which have been slipping away and intricate places I so want to share with my children and what may have brought Dave to me.

I want to live again fully, not just making sure Olivia is or David, but if they are-I must to a certain extent?

So much to say and many feelings brewing inside of me but today is a beautiful day and Darla, Robert and kiddos are on their way to till and chill.

Another time.

My heart is so swollen!

Sunday, May 9, 2004 8:19 AM CDT

A Hijacked Journal Entry:
Day 4 � A Family Under Siege
(But Momma is enroute)

So how did Daddy-o do on day three? Did he sleep in late, get behind the schedule and destroy the family�s last full day alone together?

Noooo, Daddy-o came through. We went to the Falls of the Ohio (always a nice field trip) and the three of us scampered over rocks and launched �boats� into the raging floodwaters (river�s really high). We were later than Sheila would have had us up and out but we made it nonetheless. We got good and tired then home for naps and fluids hook up. Up later we washed cars, waxed the truck (w/ David�s big boy help) putzed around the yard and had a nice outside evening. David-boy couldn�t contain himself and hosed down anyone who came within range. You could see that he just couldn�t stop himself. Olivia was out there and everywhere even though she was �hooked up� to fluids. She�s big enough to carry the back pack on her back even with the majority of a 1,000cc bag in it. (The small size is 500cc). WE also did sink bath (for O) and shower (for DP). Awesome day (third one in a row) with awesome weather.

I got them in bed wayyyy too late to get up and go to church though. Am back. As I was writing, they just woke up. I�m downstairs on the good computer and I hear a �Daddy-oooooo. Daddy-oooo�) Of course Olivia just woke up her brother. We pushed meds, got morning peepee out and they are sitting in front of the tv (Roley Poley Oley- an Earth Mama approved show ((there aren�t many))).

I disconnect O at 10 or 10:30, not sure exact time.

We�re all excited. Mommy is coming home. (Presently ebroute as I write.) Yesterday morning O was looking kinda pukey. I asked her what was wrong, she said, �I miss Mommy.� (She got over it) It was cute.

She is having a great time. I am glad she was able to get away, even if it was for such a short (compressed) time. Sounds like it did her good. I will let her fill in the details there. But I think we�re all happy that she�ll be home soon. I think it may have made all of us appreciate each other more (except the kids who are getting tired of Daddy-o)

Well, time to scoot. Gotta go and get the day started. We're burning day light here.

Love to all our friends. Those who pray for O and help us and care about us. As always, thank you all.

Daddy-O

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