History

Friday, December 29, 2006

12-29-2006PM
It is with very heavy heart I must post another passing of one of our sweet Angels. Kyle entered Heaven today at 2:55pm.

Kyle's Site: http://www3.caringbridge.org/oh/kyle/

12-29-2006 AM
I am very sad to have to post this message. I wanted all of you to know. Another one of Eli's Angels has moved into Heaven. Lance passed away last night peacefully in the arms of his mother. Please say a prayer for his family.

Lance's Site: http://www2.caringbridge.org/md/lance/

Wednesday, December 27th 2006

Please continue to pray for Kyle who is now in the hospital. http://www3.caringbridge.org/oh/kyle/

Also prayers are needed for Tay-Tay. She is in the hospital fighting a sepsis infection. www.caringbridge.org/visit/tay-tay

Monday, December 25th 2006
I hope you all had a very Merry Christmas. Ours was very quiet. I just wanted to update one little note after looking at all the ads in the paper. Don't forget Eli's Angels when you go out shopping tomorrow. You can pick up Christmas items for the kids at huge discounts. Books, stocking stuffers and other little items are perfect.

Thursday, December 21, 2006 10:44 AM CST

Well let’s see what has been going on around here. I have been pretty busy with Eli’s Angels. The Christmas boxes all went out last week and well I'm working on paperwork stuff. Oh yeah and we have been snowed in the house for 2days. I am sure some of you are caught in the same storm or saw it on the weather channel. Denver is getting snow for Christmas. It doesn’t snow that often so to have this much is a little fun. Yesterday was nuts. DIA was closed no planes in or out. People stuck everywhere and our poor dog didn’t know what to do. She couldn’t reach the backyard for her potty breaks. I guess the snow will stop soon then it will be time to dig out. Chad’s dad Dan came for a visit this week and has been enjoying the lazy days. Now that is a vacation. Sort of! I made him go grocery shopping with me Monday and Tuesday. YEAH! We did it in time. Chad is going out to shovel now. I will be sure and post a few photos of that. LOL

The news keeps comparing this snow to the March 18th 2003 blizzard! Oh boy to we remember that storm. Eli was just a month old. We lost power for more than a day and had to go to the neighbor’s house to keep our newborn warm. We were so scared he would get sick. The hardest part of the whole thing was just walking across the street. We put Eli in his car seat and off we went. That storm will never be forgotten.

I wanted to share my favorite Christmas book well really it was my favorite anytime book to read to Eli. I am sure that most of you have read it but I wanted to share anyway.

The Crippled Lamb By Max Lucado

Once upon a time there lived a little lamb named Joshua. He was white with black spots, black feet and …Sad eyes. Josh felt sad when he saw the other lambs running and jumping, because he couldn’t. Josh had been born with one leg that didn’t work right. He always limped when he walked. When he watched the other lambs run and play, Josh felt sad and alone-except when Abigail was around. Abigail was josh’s best friend. She was and old cow and her voice was always kind and friendly. Some of josh’s favorite hours were spent with Abigail. She would spend hours with josh, telling him stories. When Josh got sad because he could not run and jump and play in the grass, Abigail would say, “Don’t be sad, little Joshua. God has a special place for those who feel left out” Josh wanted to believe her. But it was hard. Some days he just felt alone. Then one day the shepherds decided to take the lambs to the next valley where there was more grass. All the sheep were excited. Josh hobbled over and took his place on the edge of the group, but the others started laughing at him. “Go back, Slowpoke. We’ll never get there if we have to wait on you!” “Go Back, Joshua”

Then he heard the shepherd’s voice. “They are right, little Joshua. You better go back. This trip is too long for you. Go and spend the night in the stable.” Joshua turned slowly and began limping away. Never before had Joshua felt so left out. A big tear slipped out of his eye, rolled down his nose, and fell on a rock. “Don’t be sad, little Joshua,” said Abigail. “God has a special place for those who feel left out.” The two friends walked to the stable together. After eating some hay, Joshua lay down on some straw and closed his eyes. Abigail came and rested beside him. Josh was glad to have Abigail as a friend. Soon Josh was asleep. He dreamed of running and jumping like all the other sheep. He dreamed of being in a place where he never felt left out. Suddenly, strange noises woke him up. “Abigail,” he whispered, “wake up. I’m scared. Somebody is in here.” They looked across the dimly lighted stable. Josh and Abigail were surprised to see a baby lying on some fresh hay in the feed box. Josh limped across the stable. He stopped next to the mother and looked into the baby’s face. The baby was crying. He was cold. The woman picked up the baby and put him on the hay next to her. Josh looked around for something to keep the baby warm. Then Josh remembered his own soft, wool. Timidly, he walked over and curled up close to the baby. “Thank you, little lamb,” the baby’s mother said softly. Soon the little child stopped crying. About that time, a man entered the stable carrying some rags to cover the baby. “Look, Joseph, this little lamb has kept the new king warm” A King? Joshua wondered who the baby might be. “The baby’s name is Jesus. He is God’s Son. He came from heaven to teach us about God.” The mother said. Just then there was another noise at the door. It was the shepherd-the ones who had left Joshua behind. “We saw a bright light and heard the angels…” they began. Then they saw Joshua next to the baby. “Joshua! Do you know who this baby is? The young mother smiled. “God has heard your prayer, little lamb. This baby is the answer,” Somehow Joshua knew this was a special child, and this was a special moment. He also understood why he had been born with a crippled leg. Had he been like the other sheep, he would have been away in the valley. But since he was different, he was in the stable, among the first to welcome Jesus into the world. Joshua turned and walked back to Abigail and took his place beside his friend. “You were right” he told her. “God does have a special place for me”

God bless you all and have a Merry Christmas
Ann K

Please say a prayer for Kyle, he is one tough cookie and fights hard. He is going through a rough time and could use a few extra prayers.
Kyle’s site: http://www3.caringbridge.org/oh/kyle/

Please continue to pray for the Reynolds Family: http://www.caringbridge.org/visit/morganreynolds

Saturday, December 16, 2006 12:42 AM CST

As you all rush around preparing for Christmas celebrations I ask that you say a prayer for the Reynolds Family. Morgan Elizabeth passed away 12-16-2006 at home with her family. You can visit her site at: http://www.caringbridge.org/visit/morganreynolds

Wednesday, December 6, 2006 6:32 PM CST

As Morgan M is now in Heaven another Eli’s Angels member Morgan R is struggling. She is in the hospital and is being sent home tonight on hospice. She may only have a few hours, days or weeks. I ask that you all pray for comfort and peace for this sweet little girl and for her family as they let her go. She has been in pain and not tolerating feeds for some time now. You can visit her site at: http://www.caringbridge.org/visit/morganreynolds

With a heavy heart I share this information with all of you. It is hard to see these families going through the most difficult thing anybody can go through, the loss of a child. I think of how our precious Eli reached out and grabbed hold of so many hearts. For every child that suffers through their journey with a mitochondrial or metabolic disease there is an entire community that will miss them. Please lift the Myers and Reynolds family in prayer along with all those that will struggle through the holidays.

Ann K

Reminder for our local Volunteers! Christmas Packing day is
Saturday 12-9-2006
11-1
North Metro Church

Sunday, December 3, 2006 9:21 PM CST

Tonight I share with you some sad news. One of Eli's Angels Morgan Myers past away at 6:30am today. I ask that you all join me in prayer for her family. She will be missed dearly.

Morgan Myers
March 14,2000 - December 3,2006

Ann K

Sunday, November 26, 2006 1:26 AM CST

This is from Daddy on your first heavenly birthday.

My dearest Elijah,

Sweet Pea, as I sit and reflect on the past year I seem to be veiled in numbness. I had hoped a cathartic expository would explain what life has been like without you to share it with me and mommy. I find it difficult to grasp at words and syntax that ultimately fall short in their ability to explain my thoughts and emotions. It is as if they have transcended the volumes of written words. Despite this struggle, I will do my best.

Lijahs’, my earliest thoughts of you bring a smile to my exposed face. I went to bed each night with an uneasy feeling that something was just not right. Here is where words will fail me; but I dreamed that you were very ill, but then I would remember it was only a dream and I would then Praise Him for blessing us with such a beautiful, healthy boy. I had never contemplated being the parent of a special needs child or even the parent of a child with a terminal illness. In retrospect I understand that God was preparing me in the years leading up to your birth. He had slowly humbled and retooled me to be worthy of such a gift; and you were a gift son. As I held and played with you before work those first two months, I remember dancing with you, singing the silly song I made up just for you. You remember the words, don’t you? I often smile and sing the song to myself. In my head I replay that morning over and over again. I sometimes find it curious that such a joyful memory turns my smile into tears. I am thankful for those precious months before we knew. The three of us were innocent, bursting with life until we knew. Until we knew what God had planned for our beloved Elijah. I know in my heart He feels my pain as He sacrificed his only beloved Son. It makes me wonder why He would write your name in the Book of Life so early, knowing the pain the loss of his own Son brought to Him. I recall reading of Jesus sitting in the Garden or Gethsemane, blood passing from his pores so deep was His pain. Please do not misinterpret my analogy as a comparison to the Lord, but I am reminded of the awful seizures you would have and the pain that you were unable to express. It was as if the seizures and the accompanying shrieks were forcefully pulled from your little body; the pain so intense. Feelings of helplessness, anger, and sadness, would wash over me. I don’t know how I did it Elijah. God must have prepared me, though I felt completely unequipped. I don’t know how YOU did it son and it shreds my soul to have not been able to take your pain as my own.

The blood of Christ seeped through His pores. On your second Easter Sunday I vividly remember talking to friends after the service. You sat quietly in you kid-kart. It was difficult to engage in any meaningful discourse as my mind was always focused on you son. It was at that moment that I saw a lone delicate tear slowly weep from the corner of your eye. A tingle ran down my spine as if it were divine intervention. I was at once concerned and vulnerable, not knowing what it meant. Was this an expression of pain? Was this the Lord reaching to my increasingly brittle heart? Was this your sadness for the Father’s sacrifice? Oh how I ached to know, but it was not for me to comprehend, not then. The bond of a loving father and devoted son is so strong.

Lijah’berry, I wanted you to be perfect on Earth. Denial of your perfection would sometimes drive my sadness and anger. God spoke to Paul in 2 Cor., "My grace is sufficient for you, for my power is made perfect in weakness." You were perfect son. God had given you one of the greatest gifts. In your Earthly weakness, His power was made perfect. Appreciating this concept, it follows that you would positively impact the lives of many. There is no doubt that you did. Does this epiphany diminish my pain or sadness? It is probably too soon to say. What I do know is that like Christ, your pain served the will of the Father. I may never know or understand His plan. Nor can I truthfully say this affects my anger and helplessness in a positive way. I do know that the Father’s sacrifice secured a place for you and me to be together again. Thank you God!

Do you remember when I used to play ‘tickle monster’? Oh Praise God I can still replay those moments in my mind. I would tickle and tickle until you burst with you own special laugh. The sweetest sound I have every heard. So quickly you would tire, and I would kiss you and say, “Thank you for the laughing and smiles Lijahs'. Thank you for the laughing and smiles.” What seems like such a routine occurrence for so many was a treasured memory I will forever hold close to my heart. Soon these moments diminished as Leigh’s continued to invade and rob you of the few pleasures we could share.

Bear, you had gotten so big that we could hardly lift you! At 3’ 8” and 55lbs you were more than a handful. Despite your size, on your second birthday, we walked to the pool together. We were the only ones there at first. I recall holding you as you floated on your back, reassured by my hands behind your head and back. Then I removed them and you were floating all by yourself (maybe a little help from your wetsuit). At first your eyes glanced and your face contorted as to yell, “Where are you daddy!” I spoke softly to you and soon you relaxed. My big Bear was swimming all by himself. What a proud father. What an amazing son. Something happened that day Elijah. Daddy for the first time – let go. Elijah for the first time – you were on your own. This dawned on me at this very moment. It was our first lesson in independence; and dependence on the Lord.

I doubt my disconnected thoughts have added up to anything evocative. Tying loose ends together may help me to understand where I have journeyed this past hour. I could continue, but I am afraid it may be at the cost of something poignant.

Elijah. This past year has been painful, heart wrenching, tearful, grief stricken, filled with anxiety, depressing, physical and mentally painful beyond any pre-conceived notion I previously held. Wow, just a little honesty.
But, and this is what I want you to remember, life with you and subsequently without you the past year has forced me to realize many things.

You were here for a purpose greater than I. You were here to serve the Father. My selfish desires for your life beyond the Will of the Father were just that, selfish. Much like Joseph, it was not for me to question, but to follow. This is something I didn’t always do with graciousness, for that I am sorry.

Elijah, your pain and seizures and handicaps introduced me to a whole new world. It made me face some difficult life and death decisions. It drew from me a strength I did not know I had. You taught me that nothing is impossible in Christ. I gained a deep admiration for the disabled and profound sense of empathy for those who have lost a child; empathy beyond that of the inexperienced. Your passing had a tremendous impact on so many others. Leading the lost to Christ even today. I am humbled by your faith Elijah. I am humbled by your sacrifice. I am proud to have been you daddy if even for the briefest of moments.

Independence. Eli, I know you were ready to go home. It doesn’t mean that I still don’t, “Love you to the moon and back”. Your work here however had come to an end. To my relief and sadness, Jesus took you home.

As I sat in front of your headstone today I said these words, “Eli, I love you so much. It is hard to believe that a whole year has gone by since you went Home. Although so much has seemed to change around me; everything is still the same. It is also one whole year without pain, yuckies (seizures), tube feeding, topomax, clonopin, depakote, feeding pumps, suction machines, oxygen machines, etc… and that makes me so very happy!!!
Unconditional Love. I did not know the meaning until you taught me. To be willing to beg to take your child’s pain, to helplessly watch them slowly slip away, to love them all the more because of and in spite of it. To let your child go. That is Unconditional Love. It is nothing that can be explained, concepts, definitions, etc… will always fall short. Unconditional Love must be lived and experienced. Beware there is an incredible cost, but if you are strong enough to give a part of yourself away, forever, the gift can be inconceivably wonderful and without compare.

Elijah, you taught daddy so much. I thank you for being patient with me and look forward to future revelations. I am even more excited thinking about the day when we will be together again in His House. God Bless you my dearest Elijah. I will always love and miss you – with an Unconditional Love.

Elijah Jeramie Kurtz
“My Main Man with the Plan”

Your daddy,
Chad

Saturday, November 25, 2006 0:09 AM CST

I pray each of you had a wonderful thanksgiving. It really is a time to recognize all we have to be thankful for.

I wish to thank each of you that have posted in the guestbook or sent an email to me or Chad on this most difficult day. We appreciate you thinking of our little guy and remembering his life. It was short but he accomplished a great deal.

When Chad and I first wanted to really start trying for a child we never imagined the road that we would have to travel to be a family. Everyone in our family had children in abundance. Matter of fact when you look around it seems everyone has children. We never thought this would be a “difficult” thing for us to do. Most of you know the struggle we had, to even get pregnant and then to miscarry. After that the years of heartbreak and yearning for a child Eli was a sweet blessing. I was so worried when I was pregnant with Eli until the day he was born. He was full of color and perfect in everyway. I had everything to be thankful for. I had been given the gift of this precious baby boy. No matter the problems along his journey he was a blessing.

This time of year has always been my favorite. I have ALWAYS had so much to be thankful for. Even in the off years I have been blessed. Now maybe I haven’t always seen it that way. After all I was just a bratty little kid. Just ask my sister. Still I see it now.

The last few weeks have been extremely difficult for me. The vivid details of the last day of Eli’s life pop into my head often. It feels like both a dream and a nightmare. A nightmare only because after these thoughts or pictures pass through my mind I am filled with tears, tears and more tears. A dream because even though he was only here for a short time I will carry his sweet presence in my mind forever. There were moments in the last week or so and I am sure they will come again where I just sit. I don’t want to do anything no matter what it is. I don’t really think or function. They are indifferent moments. Nothingness…

It is hard being sad! I know that sounds strange but I am simply not good at it. I am naturally a happy person or try to be. I smile whenever possible and often do it at the wrong times. I can be very annoying. I love to laugh and be laughed at… There is nothing funny about loosing a child. It has now been a year. A quick year or a fast year well I can’t really say. I do know that it hasn’t gotten any easier really time has only deepened the pain. I long to hold my little bear’s plump fingers, brush my hand through his thick hair or just hold him all snuggled next to my heart. I just miss him so much.

Thanksgiving! This year it may not have been a turkey, stuffing and all the trimmings for us. I have my husband and I am so thankful to have such a good & loving man in my life. I am thankful to have been mommy to such a wonderful boy even if it was short. I have so much in my life that even though this year brought so much sadness it has not formed in my heart as bitterness. I pray it never will. I owe that to my little boy who never knew hate and anger he only knew the purest of things. Love, Peace and Comfort. God gave him all that he would need to teach!

Oh yes I have much more to say but can’t. The tears just seem to flow to hard to organize anything more.

God Bless you all through the good times and the bad.

Ann K

Saturday, November 25, 2006 0:09 AM CST

Friday, November 10, 2006 12:04 AM CST

First off I know that there are some guestbook problems. I had the guestbook archived and it hasn’t worked since. CB has a messages and I am sure they will be getting it fixed soon. You can still email me at: akurtz1974@msn.com

As some of you know last night was a very important night for Eli’s Angels. We received an ARC Award “2006 Arc of Excellence Award for Outstanding Contribution”! It was an emotional night because there were so many uplifting and touching stories. Eli’s Angels was among some wonderful people doing some amazing work. I was honored to have just been present that night. We listened to an inspirational band called “The Incident Reports” To watch them wasn’t to listen to the music it was to see the joy on their faces as they played. Most had developmental issues and played with such excitement and enthusiasm. It was too cool! Their first set was the national anthem. The lead singer had a problem with some of the words so the band started over and gave him a chance to get through the whole thing. It was an ahhhhhh moment.

My speech went ok! I practiced at home and didn’t cry until the very end. Things are different after you have already heard a few very inspirational speakers. When I walked up I was already emotional so I struggled for a bit and then got it all out. When I reached the end I did have to take a moment breath and finish. We have to do some hard things in our lives and getting up in front of people and telling them about a very special boy is easy. The hard part is that I know all of the difficult parts of the journey and that Eli is no longer in my arms. I also shared about our member Owen and some words from our Angel Natalie. I touched on the affects that Mitochondrial and Metabolic diseases have on our children. I can only pray that people will take a little of what I had to say with them. I don’t know if or when I will have to give another speech but I would have to say that I was honored to have had the opportunity to speak. It was hard oh so hard. Instead of putting one foot in front of the other it was words. I put one word in front of another until I had reached the end of the things I wanted to share. I have to say that it was much easier a subject before Eli left us. It is difficult to patch the heart even if it is for ten minutes of the day. Well my patch didn’t hold but that is ok.

I thank everyone that has supported Chad and I through our journey with Eli. I thank each and everyone that has contributed to help give Eli’s Angels wings to do the things that we do. I thank each of the volunteers that take the time and put in great work to give our kids something wonderful. Finally I thank our families. So many people travel their paths alone. Chad and I have not only been blessed from our father above with a wonderful biological family in the last few years we have gained new friends and family that have embraced us and held us when we needed. God is Good! I have been blessed.

I wanted to take a few moments and tell you about ARC for those of you that may not know. The Mission of The ARC of Adams County is to advocate for adults and children with developmental disabilities so that they can live, learn, work, and play in environments that are inclusive interdependent and encourage individual and family empowerment. They are funded by The ARC thrift stores and individual contributions. ARC was responsible for setting up the fund for Eli’s Lift and coordinating all the funds until the lift was placed. They get things done! THANK YOU!
Find our more about our local Chapter www.arcadams.com

We will always be connected to this organization for the good people that they employ. Paula was an advocate for Elijah and will always be a special part of our lives. Alice also works for ARC and was involved in helping Paula do what she could for our bear. Alice has also done so much for Eli’s Angels herself. Recently she got involved in our Christmas stocking project and cut and donated many fleece blankets for the birthday blanket project. I have never shared this on this page before but Alice asked her husband a PI to look into our burglary in hopes to get some of Eli’s things back. Nothing ever came back but we recognize his and his partner’s efforts to do the background work and try. We thank all of you!

Christmas stocking update: I thank those of you that have contributed to this project. I would love to have a good count by the end of next week so please get them out.
Send them finished to:
Eli’s Angels
PO BOX 423
Eastlake, CO 80614-0423

Christmas Gift cards: We still need Blockbuster or Pizza Hut gift cards so that each family will have a little something. We can also use gift cards to major stores like Wal-Mart & Target or other nationwide stores.

Local Volunteers Santa Packing day is December 9th 11-1 so please email me if you would like to come. We need many elves to help!

Thank you for your time.
God Bless
Ann K “Angel Eli’s mommy”

Wednesday, November 1, 2006 10:13 PM CST

Halloween proved to be an emotional day for us. I hope everyone had a good time trick or treating.

Chad and I had a chance recently to see Eli’s Stone. It was the first time since it was placed. I looks wonderful. I posted a photo of the front so you could all see why we had to wait so long to get it. We wanted the perfect bear for Eli. We think we found it. Even though it is beautiful our hearts still bleed for our sweet little boy. We love you Eli.

Ann K

Friday, October 27, 2006 10:53 PM CDT

Well I just got home from the harvest fun night at church. I had a great time. I asked Wanda Hannah’s mom to come along and it was nice to chat with her throughout the night. I do have to say that I had to be the most difficult person to hold a conversation with. I just kept spacing out. I tried really hard! I just wanted to watch all the kids in their cute costumes. They were running all over the place, it was awesome. It seems with all the church events I load up on cotton candy. There I was sitting a the front table with Blue teeth and cotton candy on every finger. I was bad I ate two.

I wanted to say a special thank you to Alice and your daughter for all that you brought over today. I know the kids will love everything. I am so very thankful.

I pray you all have a safe Halloween. I don't know what we will be doing. It will be hard! Even though Eli never could eat candy we still dressed him up and took him to a few houses. It was a normal thing and we wanted him to do it. I love to give out candy but I just don't think I will do it this year.

Sorry just a short update, But that is all folks.

Ann K

Monday, October 23, 2006 2:27 PM CDT

FUN STUFF COME AND JOIN US AT:

FAMILY FUN NIGHT!!!!!

Friday, October 27, 2006
6-8:30 PM
North Metro Church
12505 Colorado Blvd. Thornton

-Wear fun costumes (no scary stuff)
-Come for the $1 hot dog meal deal
-Join the games
-Collect lots of candy

Face painting-Bounce Castle-Live Music-Balloon Animals-Games-Obstacle Course

Bring a Non-perishable can or box of food to donate for COMPA FOOD MINISTRY.

I hope to see you there! Ok on to a sort of update.

I have set out to update a few times. The truth is I just don’t feel like posting them when I am finished. I am sure you all don’t want to hear about my boring days hanging out with our dog! Well my days aren’t always boring as some of you know. Then there are the all too emotional days when I cry. I guess I didn’t’ post them because I didn’t feel like it. For so long I opened every aspect of my life to all of those that wanted to learn about my son. For the most part I still share what I can about his life although I understand that some things in my life are nice to keep private. Especially when I feel as though I am winding my way through a thick forest. It is my forest and even though there are those that help I have to do the walking.

I am still trying to find way through this thing we call life. Through the ups and down it is all very hard. I am trying to find the parts of me that are shattered. They can never be put back in same way. I feel like a completely different person and I know that is OK. Things change, people change and well our journeys change. God is in control. Even though we like to think we are. I do take things as they come. Sometimes it is just harder than others. When I meet new people it is always awkward. One of the first things people ask a stranger is “Do you have any children?” I am always one that is so proud of my son that I want to share him with the world. The problem is the unsuspecting public. Most people don’t expect to hear that when you meet them in the grocery store. I am learning a new ways to live. Balance! So for now (I know this sounds so strange to those of you that know me well) I may not have much to say. There are a few social activities that I used to enjoy, that defiantly don’t have the same affect anymore. It used to be awesome meeting new people and getting to know others a little better. I feel really strange now almost selfish. I don’t seem to care about all the little things. They just don’t matter in my world anymore. I guess for me it is a blessing. I am learning to listen better.

I have done a few more pages in Eli’s scrapbook and let me tell you it has to be a really good day when I work on it because there is always a moment or more that I just breakdown and cry. I just miss holding his little hands complete with his little round fingers. I miss the morning, afternoon and evening snuggles. I just miss my son. On the other side I look around at all of the photos we have up on all of the walls in our house and see the progression of his horrible disease. I see that it was his time. That is why I can accept his death. He was in pain and his quality of life wasn’t good. I remember him in his last few days and wondering how long he could stay like this. It just broke my heart. So I understand but I don’t have to like it. I accept that my son is gone but I still don’t have to like it. I just have to live and go on without him.

Much love to each of you in your own journey

Ann K “Angel Eli’s Mommy”

PRAYERS
I also wanted to ask you all to pray for little Morgan. She is in a great deal of pain and uncomfortable. There aren't any answers to why. I ask that you lift her and her family up in prayer. You can also visit her website and leave a message.

http://www.caringbridge.org/visit/morganreynolds

Friday, September 29, 2006 12:00 AM CDT

Sorry it has been so long but really I just don’t have much to say. I thank those of you that support me no matter.

Things have been pretty quite, yet busy. Sorry I haven’t shared about Eli’s Stone. It is not carved yet. We hope it will be in the next couple of weeks. It was our fault. We didn’t have everything for them to get it ready. So I do promise I will let you know.

This week has been a hard one in respect to Eli. When he was born I went out and bought the best scrapbook on the market complete with all the baby pages. I started out filling in all the blanks and looking at how to put stuff in it perfectly. Things changed. So much didn’t go as the lines in the pages said. There were no 1st this or 1st that. So I put it away and never did anything with it again. At that point I just knew that he was not that “normal” his story would have to be told a little differently. However I did save things for one day when I felt I would do it. Now I have started and it is oh so hard to do. At first I took an event for which I had lots in the box. Looking at everything made me smile. By the time I was finished with a page or two it hurt so bad. Tuesday I worked on his birth pages. Oh how fun it was to remember how small and see all the faces as they held him for the first time. Then I moved onto his 2month photos. Smiles everywhere! He is even moving his arms and legs. Some he is holding toys. What joy! It wasn’t long after that I was in tears for those were the only times in his life he could do those things. I stopped at that point it hurt too deeply and I know the next pages will be hard and may take me a while and I might just skip and go back later. Those are the photos when he started slow down, loose weight and was diagnosed. I am determined to do this for Bear. Also for those of you that took a page to fill out at his funeral please return them soon. I am making sure they all match up right.

Check out this story. I didn’t know they would print it in the paper. They did. It went out yesterday the Thursday Yourhub.com. Just to be clear we didn't win the grant yet but it would be nice.

http://denver.yourhub.com/THORNTON/Stories/community giving nominations/Story~126571.aspx?IsDraft=False

HELP YOU FAVORITE NONPROFIT WIN $1000.00
Go to yourhub.com submit a short story

Post a story on YourHub.com about your favorite nonprofit-include information on what the organization is doing to better your community and why you think they should receive this award. All submissions will be reviewed and a $1000.00 grant will be awarded in each YourHub.com neighborhood. 15 Grants will be given to local nonprofits.
Deadline- Friday Oct. 20th

If you live in Denver there is an event tomorrow “LIVE THE CALL”
An event to unite, inform and educate people by celebrating local missions and ministries in order to further God’s Kingdom where we live.

Sept 30th 2006
Riverside Baptist Church
2401 Alcott St
Denver, CO
303-433-8665
Open house from 10am -1Pm

This event is free event open to all people that want to discover the many ways that nonprofit ministries in our local area are reaching out to win lost people to Jesus Christ and how you can get involved in helping them out.

God Bless all of you

Ann K

Friday, September 29, 2006 12:00 AM CDT

Monday, September 18, 2006 11:02 AM CDT

Well the broncos pulled out a win yesterday but not by much. As the saying goes Any given sunday so we will see how the rest of the year pans out. Chad was able to go to the game with his Dad(KC Fan). I think they had a good time.

Bonnie, Just for you.

I still have to pick up mountains of dog poop in the back yard. No it is not the same Joy as cleaning Eli's Poopy butt. Nothing will ever bring that kind of joy. It was a joy because of the difficult time he had so in my house as you know we would say PRAISE FOR POOP! Really I get no joy at all cleaning up after the dog. I thought about starting a poopy butt cleaning service though I don't think it would fix the whole in my heart. That would give poop a new healing power.

Eli is missed a great deal. Some say that time heals. I am sure that it will for now the longer he is gone the more I miss him and the faster the tears come. CB is not the same! I have trouble updating this page and I can't find the words to leave in other CB guestbook’s. However I check up on all of our kids. I keep this page going and when I have the words I right not at all like I used to. I had a great time sharing Eli's Story and telling people about the little joys in a life that from the outside must only seem to have it's troubles. I enjoyed sharing so much of how our God helped Eli, Chad and I through every moment good and bad. I often say that with Eli I never had trouble seeing things for what they were. LOVE-PEACE-JOY Now a days things are cloudy from time to time. Without Eli things are not as clear to me. The answers are harder to see. I pray more often yet the prayers seem so selfish and meaningless. Every wall in our house is covered with reminders of the wonderful little boy that we called son. He was truly a blessing. Sometimes all I can do is smile when I think of him and sometimes I can’t stop the tears.

God Bless
Ann

Sunday, September 10, 2006 11:24 AM CDT

Burr! It is cold today. Strange weather. We go from really HOT to really COLD… How are we supposed to get used to it. It has been a while since I wrote a thing. You know I am sorry for not updating but there really isn’t much to talk about. Life is life. Sometimes boring and sometimes it’s not. Right now I say I am in the middle. I entertain myself. I haven’t been good at much lately but we all have those times.

It is fun to read about all the kids and School starting for most. What a time of year. Everyone getting back into the swing of things.

Eli’s Stone is still being engraved. I am so excited to show all of you so hopefully soon.

Sorry this is a short one like I said I just don’t have much to say.

Ann K

Tuesday, August 22, 2006 4:50 PM CDT

Well today is a good day! Sort of... After months of waiting for Eli's Stone to get her it is. I went down to see it today. Hopefully it will be all carved and put in place in a few weeks. I will post a photo of it when it is all finished.

I just want to take a moment and thank all of those that doanted to Eli's Memorial fund. It helped pay for his beautiful stone. I am sure you will all love it.

Got a call from mom about the fundraiser she said total donation about $1100.00 plus a few kids items. Wow! that was a lot of work but thanks mom.

Ann K

Aug 16 2006

This is from: Matthew C. Haddad Account Representative - Sales
Colorado Rockies Baseball Club

The Colorado Rockies are pleased to announce the line-up for the 2nd Annual Christian Family Day on Sunday, August 27 at 1:05 p.m. This year's post-game event will include testimonies from both players and coaches, as well as live music and a special guest speaker.

Many players have expressed a desire to participate and are looking forward to sharing their faith. Clint Hurdle, Matt Holliday, Aaron Cook and Mike DeJean highlighted last year's list of participants.

We are pleased to announce two new additions to this season's event. Former Major League pitcher, Dave Dravecky , will be sharing his message of hope and will be reflecting on his Christian walk. His remarkable story is both motivating and inspiring. To learn more about Dave, please visit his website at www.davedravecky.org.

John Waller and the Southlink Worship Band will provide live music and lead in worship. John is an award winning songwriter and musician who has produced five CD's, including the new release titled "Say to My Soul." He has shared the stage with some of the top names in the Christian music industry such as Newsboys, Stephen Curtis Chapman, Third Day and many others. You can learn more about John and the band at www.southlinkchurch.org.

We invite you to join us for Christian Family Day 2006. Please click on the link below to view the flyer that should help in promoting this special day for your church group. If you have any questions or would like to reserve your tickets, please call me at 303-312-2485. I look forward to speaking with you and appreciate your support!
http://ftp.coloradorockies.com/cfdflyer.pdf

Monday, August 7, 2006 5:14 PM CDT

NEWS ABOUT THE OMAHA FUNDRAISER!

It will be held on August 20 from 12-6pm why so long. Mom has been pretty successful at getting things for the silent action donated. Then a band will be coming in to play. WOW! I only wish I was going back. My mom and Dave have worked so hard. God Bless them.

Where: Knights of Columbus
205 Industrial Dr
Bellevue, NE 68005
(402) 291-6887

When: August 20, 2006
Time: 12-6pm
What to bring: You are asked to bring a Book of stamps, new children’s books, Gift cards, something for the kids or a donation of cash/check. This will be your admission to the event.

I still don’t have all the details but if you are in the area please come and check it out. Meet my mommy! Karen is her name for those of you attending. Make sure to say hello! Also make sure that you email those you know in the area we want a good turnout.

I have to laugh sometimes because the things I choose to share these days are of little importance. So sorry! They are just things that get me through the day.

All I have for you today is that my mower is bad. Apparently I was not supposed to mow. I pulled and pulled and well it just would not start. The better part is that it is so old now that you have to wait between each pull. Even better is that every time the bag needed to be dumped the same thing over and over. Good thing lifing my Eli all the time helped me gain big muscles. LOL! MAN I am beat! In the middle our neighbor asked if I needed help. I said no it was just being mean. Then after that it just kept on doing it. OMG it took me forever to mow our little postage stamp lawn. I would have kicked it but a few years ago when I tried that I burned my leg so bad I still have a scar. Needless to say I finished and yes hopefully our mower will live to see another yard. I look around the neighborhood and wonder why people don’t take care of their yards well after today I understand a little. To all of those that don’t mow, spray or fertilize I just bet you have a lot more time on your hands. But really I must tell you that I like to do it. I like to garden, mow and be outside I just like my tools to work. Eli’s G-mom said that “our gardens look like and old lady’s” So yes I guess I am officially old. Humm maybe I will post a couple of photos.

Well I guess I have one more thing. Chad's broken computer is now fixed. I don't want to bad mouth companies I try not to so this is all I have to say. We kind of ended up this this one so from now on. We are NEVER-EVER going to purchase another DELL. EVER...EVER... EVER....Sorry if you sensed a little anger. You should hear Chad tell it. I am sure you wouldn't want to read it.

God Bless and much love.

Please keep our Eli's Angels members that earned thier wings in your prayers. As time goes on and on the prayers get us all through one more day.

Ann K

In Eli's Garden His flowers bloomed in 3s.

I know this isn't the best shot but here is some of what Eli's Garden is. Papa Dave headed up the sidewalk building in 2004 just for Eli. There are all kinds of things for touch & feel and really strong smelling stuff. We wanted him to enjoy it too. He didn't have to see to enjoy different things.

Wednesday, August 2, 2006 5:43 PM CDT

Here I am. No I didn’t disappear off the face of the earth. Things have been going on but not much to tell. Sorry! I am so excited about all the fundraisers that parents are doing for the UMDF… WAY TO GO! Keep up the good work. This month is the BIG OMAHA Fundraiser for Eli’s Angels. My mommy Karen has put together lots for this to be a success, please pray that it is. I will post information on the when and where soon.

I have to go mow the lawn in a little bit but wanted to update. Not much to update I just didn’t want you all to worry. We are doing ok. Time is passing and passing. Hopefully Eli’s head stone will be here soon. Not sure when but hopefully within the next month. I talked to the company today and no news yet. We are getting excited to see it.

Broncos Training camp started this week. For those that don’t know the Broncos hold training camp that is open to the public. We took Eli every year. His first training came was just a week before he was diagnosed with Leigh’s. Yeah that sucked. Anyway it was our last FUN family thing before. A couple of weeks ago the neighbor girls were asking if we were going. Part of me wants to go but just can’t do it. I don’t know if I could. There is always next year and the year after. We did that just for Eli. Then there is the count of the missing broncos things that we will never see again(darn brats). We still have all of our memories. Nobody and I mean nobody can take those away. I may not be able to remember my own birthday but I won’t ever forget my bear.

Today has been and up and down day. I just don’t know which at what times. Sometimes all I want to do is get out of the house then when I do I am just reminded of all that I did with Eli. Shopping just sucks. I hate it. Yes! I said I hate shopping. I used to go up and down the isle’s looking at everything now there just isn’t anything that I need. With Eli if I even thought he could use something once I bought it. Anything! Well most parents by their kid a sucker at the store right well I bought Eli a book, stuffed toy or something else. It has been a while since our little bear passed but not yet a year. Time is a funny thing. There are days that the whole thing seems like a dream. Then there are days you just wish with all of your might that there was a big 56 pound kid (complete with bear juice dripping all over your shirt) snuggled up on your chest. I miss that the most…It always made me smile when I put him down and went to change my very soaked shirt.

Really I can’t pretend as if I have been sitting at home on my butt although some days I do. I have been busy with Eli’s Angels. The August Packages are in the process of going out. Christmas is creeping up on us and I am planning! What fun. Sometimes I wish that we were a huge charity and could do more but others I am just satisfied that we can do what we do. Thank you to all of those that help out with Eli’s Angels, Those that have donated and all of the families that let us into their lives.

God Bless
Ann

Wednesday, July 19, 2006 11:57 AM CDT

Our computer problems are not solved. They are a bit better. Lately it has been one thing after another. Chad’s Computer has plummeted to junk status. It may be a while and a few $$$ before it will ever work again. There are other issues with my computer to keep my internet working. It has become very frustrating. Don’t these electronics know I have things to do? YEAH RIGHT!

Ok on to the drama… LONG story really short. I got to see MIKE (my brother from CA) last night for about an hour during his long layover at DIA. Then I got locked out of my house until the locksmith could let me in at 2AM.

Today I had to cancel my first interview because we have to get our garage door fixed. Yes this was the cause of me being locked out. Bad Door! Did I say my first interview? YES! In an attempt to get a job and get off my rear I set up an actual interview. Lots of good that did me. It was so hard to cancel. I know how bad it looks to cancel on them. I’m the one that wants a job. My excuse, well the garage door. Yep! I told them the truth. I find that my truth is sometimes way more interesting then a lie. I once called into work late because I was stuck behind a DEER in the Road. Really it was a herd of Deer that had recently escaped from the Rocky Mountain Arsenal (An animal refuge now). When I finally did get to work my co-workers and bosses had printed all the deer photos they could find and put them up around my desk. That is the best one but I have a whole book of good TRUE stories. I am one of those people that try so hard and well sometimes it just ain’t gonna happen. People look for signs in their daily life to tell them which way to turn. I guess I am stubborn because God has to drop bricks on my head. I just never learn!

Man what happened to happily ever after. Isn’t life supposed to work like that? Oh yeah I have read way too many children’s books.

I do have lots to updates and am working on them. Hopefully I will be getting it all up soon. Stay tuned.

Ann

Wednesday, July 12, 2006 10:45 AM CDT

We are having lots of computer trouble in the Kurtz household in the last week. I am sorry if there are Emails that I have not answered. It is all about our access. I will update more when know that I will not loose my connection within mins.

much love
Ann K

June 23, 2006

Fathers Day 2006 A Note to My Elijah on Our Special Day – Father’s Day

On this, a father's very special day,
I feel sadness as you are away.
I lose track of the tears that stain my face,
I struggle, but know you are in such a better place.
You are with The Father - for my son there cannot be a better place, but I still miss you dearly, ‘Lijahberry.
I think of our late night 'talks' as we snuggled in bed.
"It's okay to go Bear, Daddy knows you are tired and in pain." "You needn't stay just for Mommy & Me; Jesus is anxiously waiting for thee."
"You will have so much fun in Heaven my 'Lijahs, do not worry about me. You deserve so much more, that only The Father can restore to thee." "I tried my hardest to be a good Daddy, I hope you remember the times we played, the brief moments when a smile would cross your face and a giggle would erupt. I remember the morning of August 7th, 2003. Grandmom had stayed with you at the hospital that night, but when I walked into the room and longingly reached for your embrace, a smile appeared on your weary face. What a beautiful gift for a Daddy, from his son in so much pain. You always gave more than I could possibly return. I wanted to make it all better but it was not to be. November 19th, 2005 as you lay on the floor with Grandmom you reached for my voice as I walked by. Your vision gone and hearing in decline, you still knew your Daddy and you were mine. How was I to know that in a few short days you would no longer be with us? The pain is still real and the cut still stings. My love for you however remains unchanged.
Last year on this day you helped me put my Father's Day present in my garden. Today, I will place a Bear next to the Gnome to remind me of you Eli. I put up a heart and flowers on your gravesite today and read you two books, 'Daddy Kisses', and, 'You Are My I Love You'.
I will put up a train in your garden tonight.
My son, Elijah, all I ever wanted for you was everything. All I could give you was my unconditional love. Despite my shortcomings I tried to be the best Daddy I could be. Thank You, Thank You, Elijah for allowing such a feeble and tired man to be your father. Ahhh, what a privilege to be blessed by your perfect soul. I ache and ache to hold you again. In Heaven my son, we will be back to together again. We will lie in fields of daisies and stare at the clouds laughing about the shapes we see. I'll help you catch your first fish. I'll take my first steps with you. I will hold you close dear son - and Praise Our Heavenly Father for allowing us to be together for eternity. Until then, I will do my best to endure the pain. I will try to remember the good times and the life lessons you taught me. I will dream of your bluest of eyes and your think wavy hair. I will sometimes feel fleeting grasps of your hand. Your perfect fingers wrapped around mine. I know if you could, you would shout from the Heaven's "Happy Father's Day Daddy, I Love You!!"
I miss you dearly Elijah-berry.... my heart is broken.

I love you to the moon and back, and to infinity and beyond!!!!
Thank you for allowing me to be your Daddy.
Your tired,loving,
Daddy.

Tuesday, June 13, 2006 11:42 AM CDT

I just wanted to add a note that came in a card. One of these days I will figure out how I can share some of the thank yous.

Tabitha says "thank you to everyone who cotributes... You are all Angels! We love you Dearly!"
http://www3.caringbridge.org/tn/tabbypaige/

Laila-has a new CB site. Please visit and say hello. She has been a member of Eli's Angels for a while now.
http://www.caringbridge.org/visit/lailaprather

First off I want to tell you all something cool that happened on Friday…I met Carolyn and her daughter Sarah. Carolyn’s other daughter is thought to have a neurometabolic or Mitochondrial disorder. I first talked to her months ago when her newborn was having many problems. It was pure music to my ears to hear that now 7 months old she is doing much better. They haven’t found a reason for her problems yet but she is being watched. Sarah is the sweetest young lady. I didn’t get to talk (Shy) to her much but she smiled a lot. I sure like those. It was so nice to meet both of them I talked and talked. I am starving for human contact or something.

Sarah had been working on a special project for the kids in Eli’s Angels. I am still in awe! The project was beautiful note cards with her artwork on the front and a special little note on the back. There are 6 different designs. OH MY! I know our members will love them. Thank you Sarah…Carolyn had a book drive recently and she brought boxes of books over. These two ladies worked so hard to help Eli’s Angels. Thank you both.

You would think that someone that doesn’t work would have enough time to stop in and update once in a while. You are right! I do have the time but not the energy to update. My statement is “Summer Sucks”. Sorry to be so blunt. This last month has been so hard on me. Everyday it is something different. Basically I need to find a JOB! Yes it is time before I go completely nuts. There isn’t much to do and I stay as busy as I can. Each day like clockwork I hit a wall with no motivation left. Please don’t hear me wrong I am lonely. I could explain it in twenty different ways but the truth is that I miss Eli and the things we would do. When it came to him I would try anything at least once. Now without him I am an old bitty in the house.

I trust in God and know that there is something for me to do. I am stubborn and can’t see it yet. It will come. Maybe until I see the light I can at least find something to do.

Oh the truck goes in for the bumper work tomorrow. Should be fun!
6-14-2006
Change of plans… The truck cannot go in unless we plan on paying for it ourselves. We got a call yesterday from the ladies insurance saying they were unable to contact her for her version of the story. YEAH RIGHT! Until they do they will not cover a claim. Boy this could turn into something fun. I had just hoped it would be easy. Can we say that our house should have padded walls. LOL

There are many prayers I will try to post them later.

Monday, June 5th 2006

Ok you will all like this. Chad and I have always been pretty Lucky. Just not the kind of luck you want But lucky indeed. Yesterday I was waiting for Chad a parking lot and BOOM…. I looked around and the van that was parked (IN A SPACE) in front of me just floored it and ran right into our parked Truck. That is great luck. I looked up and she looked up and I just waved. What else could I do? It was really odd. So we did the insurance switch a roo and hopefully all will work out. Chad thought I was kidding when I went into the store to tell him. Keep in mind we think that our BIG WHITE TAHOE could be invisible. It wasn’t too long ago a lady at a RED light thought the light changed and floored it into the back of the truck. Maybe it needs some Neon orange paint or something. This is just tooooooo crazy

Thank you Heather for coming over and helping with our July-August Eli's Angels Stuff. Boy did we get a lot done...Your help is awesome!

ELI'S ANGELS NEEDS-
General Project-
-Need Fleece Fabric.
Now that it is summer we might be able to find some great sales! Just box it up and send it to the PO BOX 423, Eastlake CO 80614-0423
Any style or colors needed.

Christmas Project-
-a few people that can sew / Just email me at: akurtz1974@msn.com

Parents of Members! Thank you for sending the updates back so quickly for those that haven't yet please put them in the mail. The updates are a great help in planning.

Tuesday, May 30, 2006 5:29 PM CDT Hello everyone! I pray that you all had a blessed Memorial Day Weekend. I would like to thank all of those past and present in our Armed forces for serving our country.

Chad’s parents Dan & Cheryl were here for the weekend. Sunday we went and visited Eli. First we had to go shopping and get him some more stuff. Oh yes he always has to have more stuff.

Monday was very hard for us. Some days are harder than others. I think I must have talked every minute of the weekend because I haven’t been able to say much today. There just aren’t words. Maybe sadness. I think that is why I talk so much sometimes. If I talk I don’t have to think. YEAH that is a good thing… I am one of those dangerous thinkers.

Natalie’s Family chose Eli’s Angels for those to give in her Memory. This meant a great deal to us for them to think of our program during such a difficult time.
$155.00 has been given so far in Memory of Natalie Eacrett
NATALIE 12/30/1998 - 5/06/2006 She is misseed dearly. Please visit her site and leave some encorageing messages for her family.

In August there are two Fundraisers being planned for Eli's Angels. In Omaha My mom Karen is putting together a concert and here in Colorado 24 hour fitness is hoping to do a whole week of fundraising events. I look forward to both… How fun!

I also wanted to tell you all about a really cool thing that my mom got to be part of. She was working catering at the Casting Crowns concert at the Mid-America Center on Omaha NE. She got to meet Nichole Nordeman and received two Boxes of signed CD’s for the kids in our program. One box from Casting Crowns and the other form Nichole. Dan & Cheryl were able to bring them to Colorado this weekend. Wow! It is an awesome gift.

I know this is a short one. I am a bit busy today and really cannot get a grasp on my thoughts long enough to organize them for a journal.

Many blessings
Ann "Angel Eli's mommy"

Monday, June 5th 2006

5-21-2006

Morgan R had a birthday this month and as a birthday gift her parents asked people to give Stamps to Eli's Angels So far there have been 12 Books of stamps and $240.00 given in honor of Morgan's Birthday... Thank you for thinking of us on your daughter's special day...
www.miracleformorgan.org
***Prayer Requests5-21-2006***
Received an email regarding one of Eli’s Angels Members Andy. He had a liver & kidney Transplant yesterday. Please pray for no rejection & quick healing.
http://www2.caringbridge.org/ma/andymaclean/index.htm

From Miranda’s Mom “Miranda is really having a rough time right now. She was just discharged from the hospital again. Her breathing is becoming more and more of an issue and she really HATES having oxygen on. I am really praying she turns this corner soon and does not end up back in the hospital.”
http://www3.caringbridge.org/pa/miranda/

Wednesday, May 17, 2006
I know it has been a whole week. Sorry. Every time I plan on an update something comes up... Chad and I have been busy in the yard. We had a dead tree so we replaced it with a much larger stronger tree. Then dirt-sod-rock. No wonder why people choose to have someone else do it I am beat.

I did want to give a couple of good announcements. Family and Friends! We are so proud of these young ones. Well I know they are all grown now.
CLASS OF 2006

Rachel - Warrensburg High School
Hogan - Bellevue West High School
Lucas - Horizon High School
Ethan - Horizon High School

May 10, 2006 Today was my Planned King Soopers fundraiser. OK it isn’t as glamorous as it seems. I spent 4hours at a table in front of our local grocery store. I gave out bookmarks, told people about Eli and Mitochondrial & Metabolic diseases. I think in general there are that many more really confused people in the world. I did try. It was interesting. The first time I have done this sort of thing. As long as I sat in the sun I was warm but once the clouds came over BURRRRRRR. So now that it has been a few hours a lovely RED color showing up on my face and oh boy it is starting to hurt. GREAT JOB ANN! That is one thing I am usually very careful about, not today! I had a pretty good time and met some wonderful people. I know that this doesn’t sound like much but it brought in $65.00… That is half of one month’s postage. It is more money than we had yesterday and well I can’t say my skin is Elmer’s glue color anymore.

Now I have lots to do around the house. The laundry is piling up and well I have to go shopping for dinner. Last week when we were out of town we had some electrical problems and lets just put it this way. I spent an entire afternoon cleaning up our thawed freezer “Thanks mom for the frozen berries” Did you know you can change the color of just about anything with a gallon of thawed berries. OH YES! I wish you could have all seen it. I was lucky I found the mess before it got warm I can’t imagine the smell then. I was glad we didn’t shop before we left. We lost all the food that was in the freezer but it wasn’t very much.

Thinking about the New Angels in heaven. I can only dream that they are having fun using all the functions of the bodies that were limited here on earth. The are all missed so very much.

I will post any further information that I hear from Toni about RJ's Arrangments. For those of you that would really like to send a card send it to the Eli's Angels PO box 423 Eastlake CO 80614-0423 C/O The Saluk Family. I will forward them on to them.

God Bless
Ann

Tuesday, May 9, 2006
I received a message tonight from RJ’s Mom Toni. “RJ earned his wings tonight around 5:15 pm”

Roy JR 8.16.2003-5.9.2006 Leigh's Disease.Visit his website:
www.caringbridge.org/visit/rjsaluk

I ask that you all pray for Toni as she makes arrangements for Precious RJ.

Please storm the heavens with Prayer for these two families. As I prepare to go through my first Mothers day without my sweet son. I think of Toni and Hope as their children have gone to heaven so close to mothers day. I ask again for you all to pray for strength them and for me. This week has been hard for me with mothers day approching. This holiday seems to be extreamly difficult for me this year..

Saturday, May 6, 2006
Prayers- Please pray for Natalie's Family as they go through saying thier goodbyes to thier brave, sweet, strong little girl. This is a message from Natalie's Page....
"Saturday, May 6, 2006 6:33 PM CDT This is probably the hardest update I've EVER had to write. God gave my beautiful little girl wings & called her home to him this morning about 6:30 AM. Natalie died after a valiant fight through this very difficult week & she is finally at peace.

Thank you for faithfully & lovingly following her 7-year battle w/ Mito & it's many, many complications & for keeping my family in your hearts & prayers.

I will post more details about the services sometime tomorrow, but as of right now I believe it will be Tues & Wed."

Sunday, April 30 2006

Busy busy but I really can't tell you what I am been up to. No good I can tell you that... I haven't updated in a few day but really don't have much to say right now just wanted to let you all know we are well.

Keep many of our little Angels in your prayers.

Wednesday, April 26, 2006

This local little girl passed away 4.25.2006 it was an unexpected health problem. Please flood the heavens with prayers for her family… Her memorial is on the 29th.

www.caringbridge.org/visit/BriannaBadger

She was 3 1/2 years old and I am sure it will be hard for her little buddies to understand. Please pray that God takes them by the hand and helps them all through this. Parents! "What about Heaven" Is a book that I often read to Eli it might be helpful.

Tuesday night late
Alright! Since Eli’s passing I have been doing updates during the day. My new normal isn’t normal at all. Everyday is different. Oh and for those of you out there the think that I am perfect I AM NOT! I have plenty of faults. Ask anyone that knows me. Oh wait that is a big can of worms…TEEEE HEEE HA There isn’t enough room on this website to list them all. I just wanted to clear up that whole thing. Eli was perfect and I was his mother that doesn’t make me perfect JUST BLESSED very blessed there isn’t a greater gift that I could have been given. I have missed him dearly since the day his beautiful blue eyes closed and went to heaven. Yet as each day comes and go's I miss him more. I didn’t think it was possible. It is… I miss that little man so much. The last couple of weeks I could be standing around the house, driving in the car, walking through the store and I think of my bear and how he would have been there right beside me in his chair. We like to hold hand and stroll through places. I even catch myself talking to the backseat like I did when he was there in the truck. There has only been one that I have reach back to touch his foot as I often did at stoplights. The crazy things we do as mothers. Well sometimes they go unnoticed and then there are the realizations that you are grabbing for a foot, talking too, walking with only a Memory…I usually catch myself right away and that is the hardest time. In my mind he should be there and he isn’t. I don’t discount the things that I have done lately I just want you all to know that even thought I feel this way from time to time. It will happen. Know that I pick myself up at the beginning or end of the day. I guess some times you just don't know what to say and others I can't stop blabing and most of it doesn't even make sense. Must be the sleep talking.

I guess this is the first update in a long time that I sat down to write before bed. I don’t even know where to start so I will start with an emotional one.

Prayer Request: RJ has Leigh’s disease This is from his mama Toni "RJ quit tolerating his feeds and has been on Pedialyte for 32 days now. The doctor from our local hospice said Pedialyte could sustain him for 25 days, give or take. He is a fighter. We know we are down to the last days and it is an emotional roller coaster ride, I don't want to let him go, but I know I have to. Again I thank you for your support and prayers!"

PRAYERS I ask each of you that visit this site
*to say a prayer for RJ & Toni as the may be spending some of their last days together.
*to pray that the time they have left is full on wonderful moments no matter how many days or even months he is here with us.
*pray for Joshua who has been recoveing from major surgery and a specail pray that the finaces revolving his care are found.
*Natile continues to stuggle I pray for good days...

The weather is following my feelings or the other way around. Of course I got out early to plant Eli’s Garden this past weekend. Saturday 80 Sunday 65 TODAY 30-40 and snow… Sunday Chad and I covered most of the plants. I pray this doesn’t mean anything bad for Eli’s Garden. It is hard enough to be outside without him so his garden has to look perfect this year.

www.elisangels.net These are donations from a fundraiser that a former volunteer Kristi P held in honor of Eli’s Birthday 2.15 The website has not been added to include this list but it will. Keep in mind we are a small non-profit. Chad updates the site and will do so when he has a moment to do it. These are the names that will be added for this Fundraiser PLEASE email me if you are missing or something was not addressed. I sent letters out in regards to these donations. If you got one then and one now just know we are double thankful for your gift...

Special Birthday Box for Eli’s Birthday February 15, 2006

Anne R
Anne R
Christy T
Cole & Beverly P
Dave & Leigh M
Darien M
Delores C
Don & Dee F
Dorine M
Dutch & Deb M
Elizabeth D
Future Pas at Union College
Hope E
Jesse S & Family
Joe & Colleen F
Joe & Karen R
John & Erica T
Jon P & Tiffany R
Johnny M
Keith & Paige D
Kelly & Kirkland K
Kelly-Christine D
Kerry & Diane In Memory of Bethany Slaven
Kristi P In Memory of Marilyn E. Blake, Margaret D. Patzman,
Patzman Family In Memory of Tracy Patzman
Lucinda B
Mary & Berlie M
Maureen B
Melanie Z
Melissa M
Michael, Tiffany, Alezavier, Jasmine & Nathanial B
Ozanira V
Paula B
Rhonda R
S Shaman-Fogel In honor of Taryn Fogel
Sandra K
Shannon K
Stacey F
Sylvia W
Take Back the Night WSU support Group
The Branham Family
The Cochran Family
The Lappen Family
The Lefevre Family
The Noble Family
The Paulin Family
The Prather Family
The Reynolds Family

That’s it for tonight I am really tired and going to bed. I shouldn’t gotten out of bed to do this but you know how your mind works in the middle of the night. It fights you until you do things. Now hopefully I can sleep.

Much love to all of you that still faithfully come here to read about our journey even though my Eli’s has the most happy ending a parent could want. No more hurt…….ever

Ann K “ Always Angel Eli’s Mommy”

Sunday, April 16, 2006

Happy Easter!!!!

PLEASE check out the www.elisangel.net to see the new members. Well some have been members but now you can meet them. Click on the names and most will take you to thier sites...

Today was a little windy and not as hot as it has been but Chad and I went on our yearly mission to get our Flowers. We drove down to the greenhouse that we used to take Eli and got all kinds of pretty things. We are only missing two things. I will have to pick those up another time. We always try to put the same things in and a few extra for fun. With Eli being blind we did really fragrant things and textured Items. When gardens are pretty to look at we catered Eli's to his needs. Can’t wait to get them planted!

Oh yes! I must say thank you to Kayla who has enjoyed a day of Return address stamping Eli's Angels puffy envelops. There were many boxes so it had to be work. She is such a sweetie.

Friday, April 14, 2006 Here are some Eli Easter photos sorry if I posted too many for those of you dial up kids...

3Pm
Just got back from runing around the city. Wow! I went over one road today and looked up to some beautiful Clear snow covered mountains. That will always amaze me when it is 80 and she sun is shining so bright you sunburn in minites. I tried to take a photo to post for you all but by the time I got to my camara the light had changed and it was time to park. Sorry... Boarders was great I picked up some really cool books and used more of the Birthday gift cards. Thanks to all who doanted.

AM Good Friday everyone!
OK ok! Sorry I had to update because the weather has just been beautiful. Some windy times but most of all it is up in the 70s. Today it is expected we should be at 80. WOW! The Gardens are ready for Annuals. Not sure when we will go and get them. It has been fun watching the lilies come up. We planted a few this year not thinking most from last year would come up. NOW lots of lilies soon. I was worried about Eli’s Beautiful rose bush but it is coming back YEAH! The warm sunshine is lovely but really HARD for me. Yesterday before Chad got home I wore myself out (Doing nothing)! So I know it was bothering me about Eli. That was pretty much confirmed when I had Eli dreams all night. Not bad, Just about Eli…The weather is great because you can get out and enjoy it but enjoy what. I just don’t know what to do with myself. Tuesday I did lots of shopping for Eli’s Angels. That was fun. I hadn’t done supply shopping for a while and was running pretty low. I also took a trip to the Bookstore and used a few of the Girt cards (Donated to Eli’s Angels this year for Eli’s Birthday)! That was fun. Everyone kept asking if I would like a basket. I said nope, I’m good. I left with a big stack of some great books. Thank you to those of you that donated giftcards to Barnes and Noble. OH! Those of you that donated Boarders cards will that will be today…. Thank you for donating them.

Chad is feeling better it was three days of yucky for him. Other than that we are doing ok. I am trying to stay busy and well Chad it toooooooo busy… what a combination we make.

***PRAYERS***
-Lily was admitted to the hospital
-Joshua is still fighting and now is having complications from his surgery.
-Natalie continues to have multiple problems and pain.

Tonight is the Easter Egg Hunt for church. This week I got to stuff all kinds of plastic Eggs. I even got to do the shopping. I loved the looks people gave when I went through the store with 21bags of 48ct eggs. I guess all together there is a count of 4000 or so eggs. It sounds like so much fun. I sure hope the kids have a blast.

Easter Celebration Sunday April 16th 9AM & 10:30AM

Many of you have emailed me wondering what our needs are for the program. Well! I have an answer. NOTE CARDS. I have a group of volunteers that send a card out to each member once a month and we are very low on Note cards. I like them to be blank inside and as fun as you can find. Along with that we are always in need of STAMPS.

NEEDS: NOTECARDS & STAMPS
You can send donations to: Eli’s Angels PO BOX 423 Eastlake, Co 80614-0423

ARC in Denver is holding a FOOD drive the whole month of April.
ARC was very involved in Eli’s life and getting him what he needed. Support them in helping others. You can drop off non-perishable food items at any ARC thrift store or call their main 303-238-5263 and have them pick up the items. You can also call this number for regular donation items such as apparel and home furnishings.

Check with your local ARC and see if they are doing a FOOD DRIVE also.

Metro Denver Store locations and phone numbers:
• 10000 E. Colfax, (303) 343-9843
• 1070 S. Sable, (303) 369-5858
• 1515 S. Broadway, (303) 777-3703
• 255 S. Hooker, (303) 936-4371
• 3047 W. 74th Ave., (303) 428-1591
• 5151 W. Colfax, (303) 825-7033
• 7485 E. Illiff Ave., (303) 752-2731
• 9661 W. 58th, (303) 420-0358
• 6500 W. 120th Avenue, Broomfield, (303) 439-7255
• 9131 N. Washington, Thornton, (303) 450-4811

Let’s help them with a successful food drive this year.

*****Please say a prayer for our members of Eli’s Angels. There are 84 now and many of them our facing health issues right now.*****

Final Note: PLEASE link www.elisangels.net
to your page so others may find our little members and pray also.

Ann K "Angel Eli's Mommy"

Friday, April 7, 2006

Today I woke up to the crashing of the lift panels. The wind was blowing so hard that the metal panels on the lift were banging back and forth. Each time I would go back to sleep it happened again. Talk about mad. So I gave up and went in the other room to watch the news. Parts of Colorado were getting blizzard warning and lots of snow. We didn’t lose anything like trees but I was glad I went on Wednesday to sell the pop cans. It is really nice when they blow all over the back yard. It is like an Easter egg hunt but much dirtier. Not this time I was ahead of the game. The wind did die down as the day went on and right now the sun is shining and you would think the morning never took place. Crazy Colorado weather! Speaking of Weather say a pray for the families that lost loved ones in the Tennessee Tornados today. Last I heard they were still digging through looking for survivors. Coming from Nebraska I remember too well tornado season. Matter of fact one touched down just last week, close to were I grew up.

This week was a pretty good week except Chad has been sick the last couple of days. Men and sick don’t go well. All the years I cared for Eli and it is much harder to care for a SICK Chad. Today I went down and got Eli’s Stone ordered. We hope they can do what we want. It will take about 4 months just for them to get it. I don’t like that we have to wait so long but if it is perfect it will be worth the wait. The lady helping me said “So your little guy died on Thanksgiving” and she gave me that look. I said NO he passed away on the 25th. Then I said for Eli though it is only fitting since we were so thankful to have him. I don’t know what she thought but in my heart I hope that it will be a time to remember him on thanksgiving for the gift that he was not for the time that he took his last breath.

I sure miss Eli… I sure do miss that little man. Everything about spring reminds me of him. From lying on the grass waiting for daddy to come home to getting out in the afternoons for strolls though the neighborhood. He is missed so dearly.

*****Please say a prayer for our members of Eli’s Angels. There are 84 now and many of them our facing health issues right now.*****

Ann K "Angel Eli's Mommy"

Monday, April 3, 2006 1:43 PM CDT

My week has been pretty busy. I actually got stuff done. WOW! My nose is still running but I feel much better. Friday I went over and met Hannah, One of Eli’s Angels. It was cool. She is a beautiful little one with a smile that goes on for miles. Her mommy is just getting started on Hannah’s Website but you can visit her page at www.caringbridge.org/visit/littlebee

This weekend went by so fast. It was hard in that the nice weather brought back so many things that Chad and I enjoyed with Eli. We got outside every chance we had. Well Saturday I got started in the gardens for the year. The front one is called “the mothers day garden”. Yes! Our yard is small but we still name our gardens. I started in the front and cleaned it all up getting old mulch out and new stuff in. It was really hard do without little bear right beside me. Still it felt so go to do it. The weather even cooperated and rained for about 30mins after I was finished. That was the first rain I have seen around here in awhile. “Eli’s Garden” on the side of the house will be next. It will take the longest because of all the beautiful things he has planted there. Plus the weeds love the sunshine on that side of the house. It was tooooooooooo windy yesterday so gardening was out of the question. We did get to visit Eli and take him new things for Easter. We also took him a brightly colored flower that blows around like a pinwheel. The wind was so strong I hope it holds up. On the way home we looked to the mountains and a huge plume of smoke covered the sky. Apparently a grass fire was started by an electrical spark and went for 1300 acres. No one was hurt or any houses burnt. I guess it is just a taste of the dry weather.

Today is a great day so far. Heather P. came over early and now all the April packages are ready to go out. 83 kids as members of Eli’s Angels now. That number has grown from the 14 that our program started with since last year. It has been a growing year for the program and for me. Many of you have emailed me wondering what our needs are for the program. Well! I have an answer. NOTE CARDS. I have a group of volunteers that send a card out to each member once a month and we are very low on Notecards. I like them to be blank inside and as fun as you can find. Along with that we are always in need of STAMPS.

NEEDS: NOTECARDS & STAMPS

You can send donations to: Eli’s Angels PO BOX 423 Eastlake, Co 80614-0423

Sorry I haven’t posted photos of my trip yet. I will hopefully get to it soon. I did download them so I have a start.

Prayers
***Joshua is in Surgery today. 9total. Please pray he recovers well.
Visit his page at:
http://www2.caringbridge.org/fl/joshuakilpatrick/

***One of Eli's Angels Members Nicole's mommy had surgery and is recovering. Please pray for her overall health and recovery. Diana we are thinking about you...

Email me if you would like me to post a prayer request!
Much Love,
Ann "Angel Eli's Mommy"

Monday, March 27, 2006

Oh boy oh boy…. I have sure been absent from this site. I find myself facing life a different way than I had to the last two years. Without Elijah live is so very strange. It seemed with my little boy around things were clear and easy to understand. He worked like my vessel. I always knew what to do. Now I am a bit like a tree branch in the winter waiting to bud in the spring. There is growth under the surface I just have to wait for the time to be right to blossom. Yes! It sounds very odd I know. So is life. I am not sad although I have my moments. I am as I always was a pretty happy person. I have been blessed in so many ways and blessed by knowing so many great people. Elijah and his life have defined much of what I am today but not all. It is hard now that he is gone to know what I am. Time will tell. It never hurt anyone to be a little lost now and then. If we all knew what was up most of the time well we wouldn’t be human. The is the fun of it all finding out…

Now to what I have been up to… Well Chad had a business trip in Canada and I went along to see the sites. That way we never got lonely, we were together. Halifax was a really pretty place I just bet it is even better in the summer. We went in good weather I guess. NO snow on the ground and the locals all said he had been great. It was much like it is here in Colorado, with a touch of rain. While Chad worked I walked all over the place. Halifax is a great place to get some exercise. UP and DOWN the hills like San Francisco! I am glad I tagged along. It was the first time I got to use my Passport. Saturday March 18 we were on the 13hour trip home and I felt awful. It wasn’t like my sinus stuff it was way different. I even got stick in the Toronto airport during the layover. I have spent much of the last week without any energy and doing nothing but sleeping. The last couple of days have been better. I am back to just coughing and a little sinus drainage. Thank God I feel a little better. I have not been sick in a very long time…Don’t worry it wasn’t the Bird Flu it was just that darn Viral bug that everyone has gone through. I have some neat photos of my trip I will try to post today.

Thank you everyone for the kind messages in Eli's Guestbook.

Ann “Angel Eli’s Mommy”

Monday, March 20, 2006 12:14 AM CST

Today I just wanted to update about one of our little members.
Skye is now in the heavenly playground with Elijah. She passed quietly in her mothers arms Saturday morning.
Skye
12.17.03 - 3.18.06

Thursday, March 16, 2006

***Update
Tabby is over the stomach bug and feeling a little better.

***Prayers Needed

Maureen says "Natalie is in the PICU due to low BPS and she has gotten many, many blood products to deal w/ her low platelet count & her low H & H (4/12) with little effect so far. She is mostly sleeping and having a lot of belly pain & nausea still. Her oxygen has has to be turned up as well. But otherwise, she is hanging in there according to Hope. Thanks for checking in on her & for your caring guestbook entries as they really help pull us through the difficult times." I ask you all to lift her and her family up in prayer.

Taylor is sick and back in the hospital.

Corey's little sister is stuggling to get the nutrition her tiny newborn body truly needs. Please pray that God offers her family stregth and a solution to her eating issues.

Friday, March 10, 2006
Another day. Wow! The weather is having mood swings like crazy. Last week people were in shorts, Snow on Tuesday and well flurries today. I would say CRAZY COLORADO but this winter the weather is crazy everywhere.

Chad and I are looking into getting Elijah a stone. It is so hard to find something that we know is just right. We will look until we find it. I think we will know.

This week must be lunch week.
Yesterday I had lunch with Dawn and Terry. We went down to this little whole in the wall bar that we ate at all the time when I worked. Oh it was sooooooo long ago. I had a smothered burrito in which was smothered with the hottest green chili. I guess it had been so long I forgot how hot it was. I spent lunch wiping sweat off my face and blowing my nose. Oh yeah my face looked like a cherry. Man it was hot. Even so I ate the whole thing. It was great….

Today was lunch with Ginny and Jo. Two people for whom I have the most respect. Many of you recognize the names, that is because they came every week to hold Eli. Really they were the only ones to care for Eli while I ran errands. They were a GOD SEND to me. I truly do not know how I would have done it without them. I love them very much. We had been trying to get out for lunch for weeks and today it finally happened. They both said how strange it was in the house without Eli. No feeding poles or equipment. Still we have so many photos up. That has not changed our house is full of Eli everywhere you look. When someone that knew about Eli comes in I often send out a GET used to it vibe. If they think the first room is strange then our whole house is under the strange umbrella. He was the most beloved Child and we are so very proud to have been able to call him son. Of course our walls will represent that. That fact to me is a little funny. I forget because it is my house. That is until others come in. Some say it is great to see how much he was loved. Life or death he is and will always be loved and missed.

I took a shot of the girls(Ginny & Jo) today after our lunch yeah they think I am nuts but I wanted one of them together. When Elijah was here they came on different days. It was cool to see them together. They are still a blessing to me. The others are some from the trip back for my grandma’s funeral. You know every small town has to have a pizza hut. This one is no exception. Cheryl don’t hurt me for the one of you and the girls. I thought it was a really sweet photo. Attacked in bed! Yes! it always makes for good photos.

Prayers:

***Hailee is having balance issues and other progression problems. She is a fun loving kid and not being able to do what she has been able to is hard on her.

***Prayers for little Skye as her health continues to degenerate and she furthers her journey closer to Heaven.

***Continue to pray for RJ. He needs to be surrounded with all the love, caring & PRAYERS that he can get.

***Joshua is traveling to Atlanta next week. He is having a biopsy done on the 15th. His mommy says that Joshua will be having by the end of the month for tubes in his ears, adenoids, tonsils, g tube, nissen fundupiflication, umbilical hernia and bilateral inguinal hernia repairs, and a circumcision, and a bronchoscope to check his lungs for any physical defect or a mucous plug to explain all his pneumonias. He will be getting them all done at once in Orlando. Please hold up this family in prayer. Pray that the biopsy goes as planed and his family is supported by loving arms as they go through this very stressful time. May we all wrap our loving arms around his mommy. Surgery is always a scary thing yet when it is your child and multiple procedures the worry is intense. May Sandra have the strength she needs to be with Joshua and get through this.

***Tabby has a tummy bug and has diarrhea and vomiting. She feels awful. Pray that she kicks this darn bug.

***Corey’s Family needs to be surrounded with prayer as they struggle dealing with the diagnosis of their new little one. Emmy has been diagnosed with Complex I. and is having many eating issues.

Continue to pray for each of Eli’s Angels little members
Let me know if there are any prayers that need to be added !!!!!!!

Wednesday, March 8, 2006

Hello Everyone.
Well I have not felt much like updating. I still don’t. There just are not any words. This last month has really been a MESS for all different kinds of reasons. First off I am still getting over my sinus stuff so I am still tired and snotty. Then my grandmas passing and the travel surrounding that just a week after Eli’s 1st birthday in heaven. Needless to say updating takes time. Chad and I have not updated the donors on Eli’s Angels Website and we are very sorry for that. Time has just passed us by and wow it is March already. We have much work to do and get all the credit to those that deserve it. That being said I want to put wonder to rest. There are many things that I would like to put behind me.

Prayers:
***Continue to pray for RJ. He needs to be surrounded with all the love, caring & PRAYERS that he can get.
***Joshua is traveling to Atlanta next week. He is having a biopsy done on the 15th. His mommy says that Joshua will be having surgery by the end of the month for tubes in his ears, adenoids, tonsils, g tube, nissen fundupiflication, umbilical hernia and bilateral inguinal hernia repairs, and a circumcision, and a bronchoscope to check his lungs for any physical defect or a mucous plug to explain all his pneumonias. He will be getting them all done at once in Orlando. Please hold up this family in prayer. Pray that the biopsy goes as planed and his family is supported by loving arms as they go through this very stressful time. May we all wrap our loving arms around his mommy. Surgery is always a scary thing yet when it is your child and multiple procedures the worry is intense. May Sandra have the strength she needs to be with Joshua and get through this.
Joshua’s Page

***Tabby has a tummy bug and has diarrhea and vomiting. She feels awful. Pray that she kicks this darn bug.
Tabby’s Page

***Corey’s Family needs to be surrounded with prayer as they struggle dealing with the diagnosis of their new little one. Emma has been diagnosed with Complex one.
Corey’s Page

Continue to pray for each of Eli’s Angels little members
Let me know if there are any prayers that need to be added !!!!!!!

This has been mentioned a couple of times in simple form but now I HAVE to take a few moments and share. Many boxes came on FEB 14th and the final gift came this week. I wanted to give a huge thank you for all the work that Kristi (A former volunteer) did to help out Eli’s Angels. The work that she put in was overwhelming and time consuming yet her drive to do this was what kept her going. The donation consisted of many boxes of Toys, Books, Gift cards and a large check. The donation was a complete surprise. I did not know how many were involved. God bless all of you that honored Eli in this way. Because of you Eli’s Angels is off to a wonderful year…

We are sad that Kristi is no longer a volunteer with Eli’s Angels. She is about to graduate and has a whole load on her shoulders. Eli’s Birthday project was a wonderful idea from a great heart. God is molding Kristi into what she is to be. We are all in the hands of the potter. He is in control. I wish her all the best in the future and thank her for her service. In 2005 she put in lots of time and energy to supply books. She ran a small drive to collect books last year to be sent. It ended up much larger than she had intended. She ended up sending us over 200 books at that time. Eli’s Birthday fundraiser was indeed much larger than that. We thank her for the work she put in. Again we wish her the best in all that she goes on to do.

God Bless All of you

Ann K “Angel Eli’s Mommy”

Tuesday, March 7, 2006

Today seems like a good day. I sure hope so. God Bless all of you.

If you would like to visit the Eli's Angels website here is the link:

Eli's Angels:
http://home.comcast.net/~elis_angels/

You may share the link if you like.

Monday, March 6, 2006
******Don't have much time and will explain more later. I know there are many waiting on this one and I can NOW SAY that I got an express package today. It is what we were all waiting for.******

Saturday, March 4, 2006 So sorry this is short. I hope to update real soon I just wanted to pop on and ask you all for prayers.

RJ is one of Eli's Angels members and has had a really rough time lately. His seizures are uncontrollable right now. RJ's mommy says they are coming ever 10mins or so. He does have some time where they let up yet they are not often. Please pray for RJ’s seizures to ease up and for him to be comfortable. Maybe even for the right medication combination to help him out. I also ask that you pray for his mother. Pray that she have the daily strength in which is needed to make the difficult decisions on their journey. Pray that she is surrounded by the right people that will walk this walk with her.

God bless all of you.

Ann K “Angel Eli’s Mommy”

I am thankful for everyone that signs in Eli’s Guestbook. Some have left email information. Please if you read the guestbook do not take this information if you intend on harassing the wonderful people I know. There are days when things are hard and reading the guestbook is what brightens my world. My friends and family are not your personal mailing list.

Wednesday, March 1, 2006

God Bless you all for coming here to check up on us. I apologize for not updating sooner. Hectic is a great word to use right now. Things have been a little hectic. We attended my Grandmothers funeral in Albion Nebraska and I have been suffering from sinus stuff ever since. My head is stuffy and my nose is running non-stop. That whole climate change does it to me every time. I have been busy getting the March Packages ready and out to the member of Eli’s Angels. Oh what fun! Chad has been busy with work craziness always going on there. Can we say stress? I know those of you that work with Chad know that word very well. YEAH?

I know many of you have wondered about this. I haven’t said anything because of my grandma’s passing and on Eli’s Birthday I just wanted it to be about him. Plus we are still waiting on a large portion of the donation which we hope will be sent THIS WEEK. Around Eli’s Birthday we received a few boxes of gifts for Eli’s Angels. Then February 14 more boxes came. We received many toys and books for our members and were really excited. I was thrilled that so many would honor Eli in this way. I did not know this was happening until the boxes started to arrive. The coordinator sent me a list today but if you donated feel free to email me if you have any questions. PLEASE I ask you to email me. Thank you for all the donations. AFTERALL it is about the kids. I want to focus on that.

If you would like to donate to Eli’s Angels. Donations need to be sent to:

Eli’s Angels
PO BOX 423
Eastlake CO 80614-0423

Checks need to be made out to Eli’s Angels and sent to PO BOX 423 Eastlake, CO 80614-0423.

I have been so busy today but I wanted to write a quick update. I guess there is never a dull moment.

This is Eli's Journey and I just wanted to tell you all how much it has meant to Chad and I how much you all loved Eli. It brings tears to my eyes knowing how many were shead for our little bear. He is so missed and loved. I spent time just sitting in his room the other day and rocking. I think of how the final months were. I will always be sad that he is not in my arms. I will also be happy that he does not have to go through anymore of the pain. This journey with Elijah has taught me so much and still I have much to learn. I guess we always do.

Ann “Angel Eli’s Mommy”

Monday, February 20, 2006

Prayer Request: Sheldon is going to have g-tube surgery on Wednesday. He has been in the hospital on and off this year and the last few days. Pray the surgery goes well.

From Morgan's Mommy Her surgery is at 8:45am on Thursday, February 23."I know many of you have asked what to pray for: Successful surgery with no complications
No infections- her shunt is at risk too
Peaceful stay in the PICU To be home as soon as we are comfortable with the g-tube Thank you! Love, Leslie"

Update: on Joseph's surgery today. His mom wrote on his site "Joseph did wonderful during surgery. He is such a tough little guy. He was pretty comfortable most of the day around 5:30pm he starting getting a little fussy I guess all the meds wore off. And now it is 11:00pm and he is up crying and wimpering. I know that the next few days will be rough for him but I will do everything that I can to make him as comfortable as possible." Thank you for praying for Joseph. Visit his page to learn more.

My grandma Iola passed away peacefully early today. She fought for life until the very end. When I talked to my mom last night she was very positive about the time she had with Grandma the night before. I know she will always be thankful. I am glad I talk to her last night to hear the joy in my moms voice. I have smiled so often today thinking about what a gift that night was to my mom and my aunts. It will be hard to go through another funeral so soon after my Eli's yet much of me is glad she too does not have to fight any longer. I think back to the days when Grandma used to get into trouble when she ate all the sweets that she wasn't supposed to. Now Grandma you can have a piece of Eli's Birthday cake. I am sure he saved one just for you. You are loved and will be missed.

Saturday, February 18, 2006 6:20 PM CST Prayer Request:
Joseph is having surgery on Monday Feb 20th I ask you all to pray that all goes as expected and that he heals quickly without complications.

I would also like each of you to say a prayer for my extended family. My Grandmother (Iola) has been in so much pain for so long. All of us are very emotional since it has only been a short time since Eli’s passing. Most of our family has already made the journey to say their last goodbyes. The last few weeks have been so hard on her already fragile body. I told her once that she would have to take care of Eli in Heaven. She just smiled. That was exactly a year before Eli passed. Grandma even made the long journey to say goodbye to my precious son. With her failing health she traveled through a blizzard to attend Eli’s Funeral. I received a few calls from my mom today and it seems that Grandma is down to only hours. Pray she is peaceful during her final hours if this is her time. She is a fighter, Just like Eli.

Weds morning Feb 15th 2006 Eli’s Birthday!
I went and picked up three balloons today. One each Spongebob, Pooh & friends and Buzz lightyear. We even got a Mickey Balloon for a little boy that passed a couple of days after Elijah. They were both born on Feb 15th. Phillip only lived a couple of days longer. Now they are both at a grand birthday celebration. We are printing out a few photos to take down to Eli. We have a Happy Birthday sign and a FEW other things. As you all know Chad and I get a little carried away when it comes to ELI. I have to write and let you all know what a powerful feeling I have right now. I didn’t want to be sad before we left yet I still went to Eli’s Guestbook. Praise GOD for each and everyone that visits here. For you have all wrapped your arms of love around us for this difficult day. Thank you!

Later, Chad and I had a nice but shorter than expected visit with Eli. We had wanted to spend more time but the weather had different plans. Burrrrrrrrrr… Then the snow rolled in. We picked up Olive Garden and came home to have a picnic on the living room floor like we used to do with Eli. After that we had some Dariy Queen Ice Cream cake and smiled as we thought of Eli.
Ann

Eli's Papa Dan wanted me to post this for him.
I wrote this 3 months prior to November 25, 2005. I wanted to read it at Eli's funeral, but did not feel I would be able to finish. In retrospect, I wish I had tried, but it's okay.
Elijah My Grandson

I was down on my knees
Hoping my prayer would turn out right
See, there was my grandson that needed your help
Everyone did all they could do
His mother and father were tired
I'm sure you understood
Each night as he slept
They would go and hold his hand
They tried not to cry
The tears filled their eyes
Oh, God can you hear me
Was I getting through to you each night?
I would ask if you would just
Let me take his place
See, he's not just anyone
He's my Grandson
When I would visit, I would
Stay a few days
And sometimes at night
I would watch him sleep
I dreamed of my grandson
And how he would like to be
He would never ride a trike or a bike
But, I could hold and squeeze him
With all of my might
At times he would seem tired
And at other times scared
But, as a loving God I just
Know you were there
Living withour him will bring such despair
But, I know that he's in your arms
And you really do care
Can you hear me, Please don't leave him alone
Oh, God he's not just anyone
He's my Grandson
As for now, I'll try to be strong
And as brave as he was
Knowing full well that I'll see him above
When he comes running and
Jumps up into our arms, then we'll know
We are home for eternity
Until we all get there
Please, God, don't leave him alone
Can you hear me, can you see him
Elijah's not just anyone
He's my Grandson
Love you Little Man
Papa

Tuesday, February 14, 2006

To My Son Elijah on His Very Special Third Birthday

Eli it seems so long ago that I gave you your first bath on your very first Birthday.
I was so excited and overflowing with love. Although Daddy was a beginner at baths, you were quick to forgive my big clumsy hands and tentative touch. Daddy was so afraid of hurting even the tiniest toenail that the nurse fortunately took over.

Eli, I was so proud of you on your Cowboy Birthday. You were the most handsome Cowboy I have ever seen. I can still see your tiny pistols, ready at your side. I remember your custom black hat and your elaborately detailed pants, lassos and all. You wore your Sheriff’s badge with so much courage. You were ‘Eli The Kid’!!!
So many came to celebrate Your day. Family, Friends, and Loved ones from all over the prairie. They came as Deputies of the legendary peacekeeper, ‘Eli The Kid’. It seems so long ago.

When I think of your second Birthday, I remember your first solo swim. You were so brave. You looked like a surfer in your Body Glove Wetsuit. You swam with Mommy, Daddy, Grandma, and Grandpa without complaint. I cherish your grip on my arm and the love in your eyes as we snuggled in the whirlpool. Ahhhh….. I could feel you say. This is happiness, wrapped in my Daddy’s arms in a warm tub of bubbles. I know you didn’t like your cake; you seldom did, but you appeased Mommy and Daddy and went along with it anyway. Thank you for being such a good sport! It seems so long ago, your second Birthday. I did not know it would be our last together.

Today, February 15, 2006, Your third Birthday! This time you are in Heaven. Mommy and Daddy cannot imagine the festivities that must be going on. Cakes, ice cream, candy, toys, games, running, laughing and playing. I know you will have the best Birthday ever with Jesus!! I must tell you son, that although Mommy and Daddy are so very happy you are finally Home, we still miss each touch. To hold your fingers and rub your thumb. To caress your face and feel your hair. Ohh… to squeeze you tight and snuggle you in.
But those would be presents for Mommy and Daddy; it is your Birthday we celebrate today. So run and laugh and play my son. Eat cake and candy and ice cream all day. It is Your day!! But if you have a moment, please lend us your ear, as Mommy and Daddy will be sending you Birthday Cheer. We will sing Happy Birthday and read your favorite books. We will shed a few tears, and hold each other close, because it is you, Elijah, that we love and miss the most.
It all seemed so long ago… and it was gone in the blink of an eye.

Mommy and Daddy Love you to the Moon and Back!!!

Daddy Wrote the above message for Elijah on his birthday! Here are some photos of our happy celebrations with our little man.

Ann

We miss you Elijah! We celebrate today Feb 15th for your birth into our lives.

Sunday, January 22, 2006 after the loss

Ch 7 news everyday hero page

We didn't win....Darn Darn Darn. Oh well win or lose It is a great time to remember Eli and keep him close in our hearts.

We did one thing. We got a Cheifs season ticket holder to wear a Broncos jersey. If you know papa it was not easy. He said he did it for Eli.

Friday, January 20, 2006

Here is something Papa(Dan)wanted to do and with a lot of help from Chad it turned out kind of fun.

Yourhub.com Go read the story and rate it.

I am a little nervous for the big News thing tonight. I haven't slept at all the last few nights. It is a fight to get even and hour of sleep. Even so I guess I am entertaining by the amount of chatter I do when I am just going in and out. Chad said I was talking for hours. I said I KNOW I remember most of it. I was caught in dreamland but waking every few minites knowing I was talking in my sleep. STRANGE, Let me tell you. Well I guess it would be more strange for Chad.

Wednesday, January 18, 2006 8:48 PM CST

Ok! OK you all got me… I guess some of you have known about the surprise for a long time. For those of you that don’t know here is the story.

Tuesday Jan 17th I was invited to a brunch at church. I knew many people were coming and was a little suspicious that it might be bigger than they told me. Just in case I wore a skirt and not jeans. Sometimes it is better to overdress than be caught with dirty jeans and old sweatshirt. Anyway I better get to the point, My father in law Dan made me stop at the store to get “something” yeah right! Meanwhile my mommy & Dave cleaned the photos out of the house and took them to the church. In I walk to tons of people just staring at me. AHHHHHHHHHHHH what! It was really cool. However as I looked around to all those that were there for little ol me I saw all of those that stand beside me and have stood with me for so long. We walked and walk through the hard times together. It is hard for me to take such honor when it seems to me that these people all give of themselves. Well next Jan S. Announced that everyone should stand together for a photo. YEP! In walks the SURPRISE! Mitch Jelniker with 7 News. They chose me for the award they give out called 7 Everyday Hero. Oh and yes his camera man was not far behind. I was awarded the 7 Everyday Hero award for my work on Eli’s Angels. How cool! I feel weird about the award but not that it is for Eli’s Angels. Just that they gave it to me. Just so you all know. I DO NOT DO IT ALONE! I have help…

I asked Chad when we got home Do you think life will ever be normal? He told me “NO” Funny isn’t he. It seems as though I am walking in someone else’s shoes. I left mine somewhere; I don’t think I would fit in them anyway. I am a much different person than I was. Each and everyday there is someone new to meet, something new to learn and always someone that needs something more than us. I have quoted this song a lot lately and I sing it in my head a lot. Natalie Grant-Awaken Album: “If I tried to make a difference would it help anyway But then I stop and to myself I say So you want to change the world what are you waiting for” “It only takes one voice so shout it out give a little more” I think we should all own this CD. It has helped me through the last few weeks. Well months. Eli and I used to listen to “HELD” all the time. Sorry for the advertisement.

I still need to post photos and Chad has to update Eli’s Angels site. We are a little behind. I pray you all understand. The NEWs is running a few times for you locals.
Friday, Jan 20 at 10pm
Sunday, Jan 22 at 7am & 5pm
Wednesday, Jan 25 at 11am

For you out of towners I will post the link when they put the clip on their site. Still it is nuts just nuts.

Ch 7 news everyday hero page

My precious little Eli. Look at all that has happened because you were my gift. God gave you to me Oh what a gift you were. I miss the times I could just touch you and let you know that mommy was near. You my not be here but you do live in my heart. This is the sweetest thing every baby. I know I have told many people this but I have to share this with everyone else. The little footprint on the bookmarks, T-shirts and webpage is actually Eli’s Footprint that I took long ago. The photos of all the kids in their shirts means a great deal to me. I have said this many times and I say this for those of you that haven’t heard me say it. Though Eli never took a step or walked a day in his life he has left footprints all over this country. How amazing is that?

I wanted to do this a while ago but didn’t so I do it now.

Eli’s Angels Members
January Birthday’s
Heaven
Nathaniel
Kiana
Alec
Breaden
Patrick
Laila
Abby

Please pray that those that have celebrated had a good day and those that still need to have wonderful birthdays.
Keep Skye & Natalie in your prayers they have been touch and go for a while now. Always keep our little members in your prayers. It is all too often that one day is awesome and the next may take a different turn. The truth is nothing is for sure and do what you can today for some of our little buddies there may not be a tomorrow. Eli’s passing showed how devastating these diseases are. Life is precious...

May God Bless each of you!

Ann

Friday, January 13, 2006 3:46 PM CST

I BAD! I haven’t updated. I guess I just have such scatter brained thoughts. I drive from place to place thinking, always thinking. Some are profound thoughts that answers many of my off the wall questions and other thoughts are things like “boy that is an ugly house”. Those of you that have spent any amount of time with me know that I can talk the bark off a tree. I am an out loud thinker. Bad really a bad thing to be sometimes. I drive many people just crazy.

I am getting back into the swing of life. Not what is normal I just haven’t found that yet. Chad has gone back to work and then there is me and what do I want to do. Always with the “What do I want to be when I grow up question?” Who knows. Maybe someday I will or I could live my life just doing what I do. I liked being with Eli. It will be hard to accept anything less. Although whatever I do will be less than being with Elijah. I absolutely love doing Eli’s Angels and will continue no matter what I decide. I tend to think that I will just fall into what I will do for work and well maybe not.

So much that we do is a reminder that we had the most wonderful gift. Something’s in the house have been put away. For the most part Elijah is still very much a part of our everyday life. We figure each day will bring something different and we will feel it in our hearts when it is time to put certain things away. Chad and I both still enjoy going in Elijah’s room and watching TV or doing little projects. We are moving on slowly. There isn’t any rush. After all we don’t have to do it in one day. We prayed for and had Elijah a lot longer than that. It is of great comfort to see the things that surrounded him throughout his life to remember all the time we spent with him and the events connected with all of his things.

I had been meaning to get down and see my old work buddies but just hadn’t had the time. Today was the day. It was a little difficult since they moved offices. I could see it, I just couldn’t get there. It took me an extra ten minutes and two U turns. It was great to see everyone and those that are new that I haven’t met. I can’t read minds, although I can still tell when people don’t know what to say to me. I wouldn’t know either. I still don’t know what to say to most people in general. I may be a out loud thinking but never anything organized.

Well I have a few things to clean before Chad gets home. He already thinks he is in the wrong house. It is cleaner than it has ever been. I am not a dirty person but I like a nice mess every now and then. Now it looks strange no Eli and clean. I like the clean and I am dealing with the no Elijah. That still sucks.

Thank you to all of those that hold us up….. We need you….

Ann

Ps I have some photos to post but I am having trouble with the sizes. I have to leave it to my expert Chad it is beyond me what the deal is. Oh and My mommy and Davie are coming tonight. I am excited. I just can’t wait to see Amber when she sees Dave. I swear they would eat out of the same dog bowl if they could. Dave my Step dad is a big dog person. He hasn’t seen her since the break in and was very angry to hear how she was affected. I bet I will have to remind him that however sweet Amber is she doesn’t belong in the bed or on the furniture.

More Later:

I forgot. You all have to root root root for the BRONCOS tomorrow. We play the pats. I know many of you are pats fans just keep quiet.

Big news:

One of Eli's Angels Members Corey is a new big brother. He now has a little sister named Emma. Mom and baby are doing well says big sister Alyssa. She also says she is holding the fort down so pray for her as she helps out in a big way.

Tuesday, January 3, 2006 11:36 AM CST

It is official. The New Year is upon us. Here in Colorado the weather has been very pretty. Another year went by without snow on Christmas. I am not sure if I like that or not. The wind has been more of a factor. It gets crazy when you and your neighbors are playing lets make a deal on trashcan lids. I think last round our blew three houses down. However our Angel Eli sign didn’t move an inch.

Chad and I have been spending much needed time together. We apologize if you have called and we didn’t answer. There are times we just don’t answer it.

Now that things are slowing down and all of those that were off for the holidays head back to normal days, I have been having a bit of a hard time. Yep! It is that little boy of mine. Remembering, Crying and doing it all over again. No matter I still feel like the luckiest mommy in the world to have been his. We have been out to his grave sight a few times. Each time it gets harder and harder. It is good that the emotions come it is much better than keeping them in. When we go there is always a comic relief regarding the few hundred Canadian geese that call the cemetery home. This last time we could even see their little foot prints and where they were laying next to Eli.

Again I would like to take a moment and thank all of you that donated directly to WELLS FARGO. I may never know who you all are so please don’t think of us as ungrateful. We appreciate you.

Eli’s Angels News- Chad and I have been hard at work with year end stuff. Wow! It was a lot of work but with Chad’s help it got done. We entered the new year with 65 members. We hope to get the members page updated soon.

Many of you have asked and NO! There isn’t any news on the burglary. I am sorry to be so blunt but every time I walk through the house I am reminded that this happened. I will let you all know of any news whether the thieves are reading or not.

I will keep updating but nothing really happens around here so who knows what I will have to say.

Tuesday, January 3, 2006 11:36 AM CST

Saturday, December 24, 2005

Merry Christmas to all of you!

I know that many of you have thoughts of our family during our first holidays without our sweet Elijah… We thank you for thinking and praying for us.

On Christmas Eve Chad and I went to see Eli just before the sun set. When Chad and I arrived there was a woman taken care and arranging things on Eli’s grave. We walked up and I cried. She has lost a daughter of her own and had a chance to meet Eli. It was a moment in time that we met and I guess now we are linked forever. She left a beautiful statue that was absolutely perfect. That is what made me cry how perfect the statue really was. Thank you DEE! She had placed the statue in the center of a real-wreath with Blue and Silver ribbon that Grandma and papa Galaska sent to him. We just found that out today. We took him a teddy and read him a few books 2 of which we bought just the other night for him. READING CORNER FANS-Christmas with Pooh and The story of Christmas by Patricia A. Pingry both are little boardbooks. Daddy also read Guess how much I love you. It was a perfect day to be out with Eli. This was a very had day and to have some perfect time with him made things a little better. One of these times I will remember NOT to wear eye make up. It never fails every time we get back to the truck my eyes are black. We miss our little man so much. We made sure that Eli knew the BRONCOS were winning. YEAH!!!!

After our visit with Eli we wondered over to the church. It was nice to be back at and see all those that have cared for us for so long. They are truly family.

Ok I have to tell you all a story. I will start with I AM SORRY NICOLE… I had a hair appointment last week. My appointment card was in my wallet so I had no idea what time it was. Now the day before our break in I knew about my appointment and afterward my mind was clear of any appointment until my call from Nicole. BAD ME. I forgot. She was really understanding, forgiving and she even rescheduled me right away. Thank you Nicole for everything. I appreciate you.

Christmas Hummmmmm… This year was hard. I know that Eli is with Jesus and they are having a grand party celebrating his birthday. It is just hard to be without him EVERYDAY. Christmas or not Christmas we miss him.

God Bless all of you.

Ann

This year Elijah is in Heaven. He got the best Christmas present ever! Even though we miss him, The last two years (well really three one in my tummy) he was our Christmas present.

I will post any information we get on the missing stuff. So far NOTHING! We just don’t know and may never. I just want to put the bad stuff behind me and concentrate on my little prince that is spending his 1st Christmas in Heaven away from us. Although are hearts are wounded his is full of love and he is with Jesus on his birthday.

Thursday, December 22, 2005

Today Chad and I did something special. This year for Eli we made a memory Christmas wreath. It is wonderful. I started it a few days before the break in and was thankful that if was not taken or trashed. I finished it the other day and we decided on today to take it to him. It has photos, a stocking with his name, a little bear, and little ornaments that he would have liked. It started out as a little project and turned out beautiful. I found a roll of the prettiest blue ribbon with silver in it. It only seemed that this was the right thing to do for our little guy for Christmas. A special wreath for a special little boy. I took his book “ The Chrippled Lamb” and read it. Is seemed a little strange reading out loud it has been a month since I have done it.

I want to again apologize to anyone that we have not acknowledged for any gifts sent to Eli’s Memorial Fund. We are grateful as these funds will be helping with Eli’s Funeral costs. Unfortunately any funds that were deposited directly to Wells Fargo have been anonymous so far. If you have donated to Eli’s Memorial Fund please know that the funds will be going toward his funeral costs. We have been overwhelmed by support and will always be greatful to all of you.

CSG Systems -Donna R and all of you that think about, pray for and support us THANK YOU! I don’t want to write “a tell all” but THANK YOU ALL for You know what... Chad and I don’t know what to do with you guys. We know that you must be getting sick of hearing about us. We are SO grateful for each of you that have Email, posted and snail mailed us messages. We DO read each one. I don’t know what else to say but Thank You!!!

December 25th will be a very hard day. It is of course Christmas yet for us it also marks the one month mark of Eli’s passing. Oh is that so hard to even write. So I am sure it will be in my mind.

Amber is becoming a better watch dog. She does not sleep in the same spot as she did and bark at anything at all hours now. As much as it is annoying at 2:30 am we are thankful this is becoming part of who she is. She is still the best dog.

Please pray for all of our Eli's Angels Members. Some of which will be spending this Christmas in the hospital.

Love Ann

Thursday, December 22, 2005

Today Chad and I did something special. This year for Eli we made a memory Christmas wreath. It is wonderful. I started it a few days before the break in and was thankful that if was not taken or trashed. I finished it the other day and we decided on today to take it to him. It has photos, a stocking with his name, a little bear, and little ornaments that he would have liked. It started out as a little project and turned out beautiful. I found a roll of the prettiest blue ribbon with silver in it. It only seemed that this was the right thing to do for our little guy for Christmas. A special wreath for a special little boy. I took his book “ The Chrippled Lamb” and read it. Is seemed a little strange reading out loud it has been a month since I have done it.

I want to again apologize to anyone that we have not acknowledged for any gifts sent to Eli’s Memorial Fund. We are grateful as these funds will be helping with Eli’s Funeral costs. Unfortunately any funds that were deposited directly to Wells Fargo have been anonymous so far. If you have donated to Eli’s Memorial Fund please know that the funds will be going toward his funeral costs. We have been overwhelmed by support and will always be greatful to all of you.

CSG Systems -Donna R and all of you that think about, pray for and support us THANK YOU! I don’t want to write “a tell all” but THANK YOU ALL for You know what... Chad and I don’t know what to do with you guys. We know that you must be getting sick of hearing about us. We are SO grateful for each of you that have Email, posted and snail mailed us messages. We DO read each one. I don’t know what else to say but Thank You!!!

December 25th will be a very hard day. It is of course Christmas yet for us it also marks the one month mark of Eli’s passing. Oh is that so hard to even write. So I am sure it will be in my mind.

Amber is becoming a better watch dog. She does not sleep in the same spot as she did and bark at anything at all hours now. As much as it is annoying at 2:30 am we are thankful this is becoming part of who she is. She is still the best dog.

Elijah Christmas-2003
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Elijah Christmas-2004
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This year Elijah is in Heaven he got the best Christmas present ever! Even though we miss him, The last two years well really three one in my tummy he was our Christmas present.

Here are the links to the stories that have been done on Eli’s Missing things. Thank you to CH 4, CH 7, The Rocky MTN News and all those that are getting the word out anything may aid in the return of the items. The Media coverage was done very well and respectful to Elijah. We hope that there isn’t any negative affects from the publicity. Maybe that is something we could all pray about. Please

News Story CH 4 10pm12-15-2005
News Story CH 4 5pm 12-16-2005
Ch 7 news 5pm 12-16-2005
Rocky MTN News 12-17-2005

Sunday night December 18, 2005

It is just nuts how much Chad and I have been through. I pray that it all stops soon. We are trying to move on. Just when we were missing our son so dearly this distraction happened. Now with the emotions settling back down we are back to missing our Elijah so much. I had to rearrange his room just a little to help with that feeling of being violated. It still just doesn’t seem real. Doesn’t this kind of stuff only happen to people on TV. I mean in a row like what we have been through. I don’t like living life worrying about what tomorrow may bring that is just not me. I like to put things behind me and deal with what I have. I learned so much taking care of Eli that worrying about this just sucks. I would rather not think about the last week and try to only remember my sweet Eli.

Amber seems to be getting better. On a funny note she will not go outside alone. Chad or I have to walk her outside to go potty at all times of the day. You know how bad that is to watch your go to the bathroom because she won’t go if you don’t. I just shake my head to all of this. I washed up her favorite toy. The morning of the burglary she vomited all over it. Now she is back to carrying it around like it is her baby. She just doesn’t want to be far away from us.

Ok here is what you are all waiting for NEWS on the items taken. Sadly we have heard nothing.

Christmas is just around the corner and as long as I don’t get caught up in all of the STUFF surrounding it and focus on the reason for the season I do ok. I only have the big trouble when I think of how hard buying the right Christmas present was for Eli and how no matter how hard it was we put up the tree(not this year) decorated the house and did the best we could. You know as much as the brats that came into our house took they can never damage the memory of how wonderful my child was. Oh boy he was the perfect, peaceful and sinless child. I was thinking of how many people are praying that we get our stuff back. Who knows? I don’t have much hope in that department. Elijah always had a way of transferring his PEACE and sense of what is right and important on those around him. I can only pray that those who took his things have a feeling of Eli while they where HIS stuff. No matter how horrible they are for doing this I don’t even know what I wish on them. For all I know they are reading all of this. Of course they surely had all the information after the Media reports. I can only pray that they make their money on the electronics and have a heart to return MY SONS STUFF…..

I opened up the window to our lives to share the GIFT of Elijah with the world. I have done that with such joy that it has done such good in my heart. Helping my son accomplish all that he needed to on earth was and will be a gift to me forever. I can’t tell you all WHY? Chad and I have to endure so much pain. If I could well I wouldn’t be human. What I do know is that everyday that goes by my Eli is still gone. I miss him dearly. I look at all that have learned about Eli and Eli’s Angels in the last week. Chad and I had a good laugh the other night thinking of the power that kid had in order to reach out from beyond the grave to do what must be done. It may be a while before we see any good from this and it may never come. I wake up lounge around for awhile, clean the house and hope I take a shower. Tomorrow maybe something different and each day after that only God knows.

Thank you to each of you for letting me know your feelings about all that we are going through. As many of you have followed Eli’s Journey with us you are greatly affected by both his death and the theft of his things. It is amazing to me how well we all get to know each other. What a large family we have. I mean all those that read, care about and offer support to those going through things like this. As much as it sucks, it still happens. I wish I could say that we are the only ones that have to endure the pain. That is simply not true. We are only two people in a huge world. We all have our good days and our bad ones.

God Bless all of you. Thank you for your prayers, Messages and caring for us. We read the emails and guestbook entries everyday.

Just one more note. I have been doing thank you cards. I truley am thankful for all that has been done for us. I just have to appologize if I miss anyone because of all that has gone on my sense of control and or organization has not been very strong. I am trying.

Ann

Thursday, December 15, 2005

Just when you think you have read the most horrible thing in the world brace yourselves. I am numb and can only write a few things. First off I am sorry for my attitude. I am just not a very happy person right now. I pray that for all of you that find me and inspiration that I can be that someday again. I must warn you all reading this entry will make you sick. BEWARE!

Last night I spent a few hours writing out thank you for all of the people that have supported us through our journey with our precious Eli. I wrote until my wrist was sore. I was so spent I went to bed. Chad was running a little later than me and his bed around 1am. We woke to a freezing cold house. Wow the back sliding glass door was open and Amber had thrown up her food in the middle of the floor. She was laying in shame in the other room so we just thought she felt bad. We blamed it on each other about the door being left open and ate breakfast. A little later we noticed. Someone had been in our house and taken stuff. We walked around and went into Eli’s room downstairs and all around. I think at I have maxed out on what I can take. I am completely numb. They took Elijah John Lynch Jersey and both Chad and Eli’s Jake Plummer signed hats. Among the missing stuff is every camera we own-35mm-digital-camcorder. The camera’s had Eli’s Last photos and everything that went with the 35mm and digital. Our camcorder is a huge loss because Chad is in the process of backing up all of Eli’s home movies. We are praying there was not a tape in it. I don’t even know what else to say. We were down and now we feel like we are being kicked over and over again. I pray that the contents of my purse show up somewhere who even knows. We are just in disbelief that this has happened and they WENT INTO ELI’S ROOM TO TAKE HIS STUFF. His CD player in which I turned on every night for him is now gone.

Local Channel 4 is doing a story about what has happened to us at 10pm tonight. We are pleading with the brats (nice way of saying it) to send Eli’s Hat and jersey back anonymously. We don’t even care how just get it back to us.

I can’t write anymore I feel like crawling in my closet and not coming out.

Later-

The story was very nice yet my heart is just shattered. On a better note I have enjoyed hearing that the Eli’s Angels boxes have been arriving. It is still just a joy to read. Anyway here is the link the CBS 4

Please just pray that the last moments for Eli never show up anywhere unless they make it back to our hands. Please also pray that whether our dog was traumatized or hurt she recovers. I couldn’t take it if anything happened to her right now.

11-16-2005

Ch 4 has been running Eli's Story on every news cast since 10pm last night. We want to thank them for that.

Rocky Mountain News will be writting a story they were at our house today. I will update on when it will run if I know ahead of time.

Ch 7 just left here and will be running Eli's Story on 5pm tonight.

Chad and I are just shaking our heads. As much as we hate to go through this time and time again. We just cannot believe this. We didn't want to go do the Media thing yet it has been ok. I don't want to build to much hope yet I am. Amber went up to play with our freinds kids for a few hours and came back a differant dog. Well needed care from the little ones. She seems better today. God bless you all for your thoughts and prayers. You know our little guy is still reaching out. This is crazy.

Ann

Monday, December 12, 2005 1:47 PM CST

How to feel, what to feel, when to feel or even feeling at all. Each day is different.

Chad and I have spent the last week at home. Wondering about our feelings and then just letting them take over. I guess if we need to cry we cry. We try to leave the house for a few hours of senseless shopping everyday. We don’t even buy stuff or I can’t remember what. We just aimlessly walk through the isles of the stores. Wal-Mart is open 24hours a day so that makes for two senseless shopping trips. Chad will be going back to work soon. We use this time to grieve for our little Eli. We have our memories and our thousands of photos of Eli and yet we still visit the not so great ones. Racking our brains about timelines, Smiles, what development was he at certain times. Nothing will really change any of it. All of it is a crazy vicious circle. You answer or deal with one set of questions and move on to the next thing that will eat at you. I guess to sum it all up, I had some pretty good days being lazy around the house with my Eli.

Thing just hit at odd times. I went to shower and I just missed my Eli so much. I dressed and then went in and sat in his room on his bed. I cuddled around his big stuffed toys. Last night I even dressed them up in his clothes. LOL Well they are not Eli but they look cute. Nothing will make my arms full of my loving Eli again. Time comes and goes and it isn’t really time you know the kind of time where you get your but up and do something useful. I know that day will come.

Some days I don’t seem like a good mom. This is really hard to explain so I won't try. I wake up every morning look around, think of Eli and crawl back under the covers. He was my sunshine bear. In the mornings I would always go in and slowly raise my voice and say “Good morning Sunshine Bear Mommy Loves you” then we would start our day. Now as I walk around the house I find myself picking up the flowers that have dried and rearranging the greens they left behind, all the time thinking of the life of a flower. Don’t we all wish we could keep a rose for a lifetime. How sad that they give us so much joy then die. What do we do? We chuck them in the trash. I won't ever compare Eli to a rose because the beauty of a rose fades. Elijah's life will remain beautiful forever in my memories never will he fade. Luckily for Eli He was the most beautiful little boy in the world. We did all that we could even after his death. That meant mommy and daddy gave him his last bath put his lotion on him and since he had some big boy pants (no more diapers)that will always makes me smile. Big boy underpants that he used under his wet suit. His service was the best we could do.

FRIDAY -9th we are doing a few things to redirect our sad energy for Eli's Angels that is. Chad and I went shopping together to buy treats for the boxes. He even stuffed and then packed all the boxes in the truck. There they sat ready for the packing party..

Saturday – 10th Very exciting day indeed. Chad and I went to the church to unload all the goods for the packing party. For those of you that wanted to come and didn’t find out about it. It was such short notice I was going to make it work no matter how many came. The whole thing was awesome. Every time I looked around to help it seemed they had it handled well. I don’t want to go into the details or it will give all the surprises away. Thank you to all the volunteers Jennifer-Colleen-Jo-Ginny-Steve-John Jay-Stacy-Christina-Glo They did a great job.

Sunday -11th The Boxes are off to UPS they gave a small discount and our bill was still a huge chuck…. Special Thanks a couple of you that sent special donations to help out with that huge Christmas postage bill. The packages would not have gone out otherwise. I always tell people. We are a SMALL non-profit. LOL.

Monday- 12 Well I haven’t showered. I have to stink! Yuck…. I think I will go do that now. Then I have a few things to go out and do. That couple of hours out of the house thing. I Chad needs to get to the gym. He is going through withdrawl. Maybe I will go to and stand around. Exercise just isn’t my thing right now. Who knows maybe I will get to know one of the treadmills. As least I will look like I am doing something.

God bless those that have helped out during these not so good days. Our close friends and family. CSG and Integris metals loving, caring workers our Carringbridge family.

By the way all of those from CSG that donated to Eli’s Angels doubled their donations by doing the matching funds program. (CSG matches funds for donations to 501-c-3 non-profits) We will see how that turns out.

Alright. I haven’t fine tuned this update. I really don’t want to take the time. I have sat down many times to do an update then get interrupted. My how that works. Anyway this is what you all get for know. We are doing as well as we can. We miss Eli so bad. This is hard and we take it moment by moments.

God Bless all of you...
Ann

Sunday, December 4, 2005

First off, I wanted to post to all of you the other day yet I was disturbed by the DEC 2nd message that I found and Chad suggested I leave it up for CB. I wish to put the whole message thing behind us. I cannot leave it up any longer. It drives me nuts. Plus I know that some of you are worried and wondering. This is going to be a very long update.

I thank all that have prayed for our little family. I thank all the family that traveled so far (thousands of miles for some) and through some awful traffic and weather to be here for Chad and I. I said a few times I don’t care who comes yet that was just my way of keepming calm in the little I could. I was so grateful to those that made the long journey. Our family was whole. Eli's Great-Grandma risked her own health coming from Kansas. I thank my aunts and uncle for making the trip with her. Chad’s parents brother and sister came along with my two sets of parents both brothers and my sister. Spending time with my nieces and nephew’s was so bittersweet. I love to hog their time and keep them as long as I can. It was not the time nor could we have the commotion 24/7. Close family friends opened their homes our family. Oh how I will forever be grateful to those around us for the support. I am sorry if I can't thank you all on this page by name. I know I would forget someone and there are so many there just wouldn't be room.

It has been a little over a week since my beautiful little Elijah soared to heaven. It is still hard to believe. In my mind I know that what all we went though this past week yet as the house quiets down it seems that Eli is just in the other room. I guess some denial. Other times it is too real. There is so much to say and so much that cannot be put into words.

I will start by telling you all a little story. A few months ago Chad, Eli and I went to look around at cemeteries. We went to Mount Olivet and saw the history and beauty of it. There are many reasons why we liked it. The best being that when we went to look at one section where there was a stone angel overlooking the children’s plots Eli had one big giant POOP. (I guess I had to discuss poop even though I will never change Eli again) I cleaned him up, changed his clothes and we went back to the office part of Mount Olivet. He pooped again. We thought of it as Eli marked his territory. I hadn’t thought of that since until the day of the viewing when we were showing my brother Gene, Angie and girls where Elijah would be buried. See even in death POOP is a big part of Eli. LOL.

Elijah’s service was beautiful. The singing and speakers did a fabulous job. The pastor “Steve” was an interim pastor at our church when we first attended. When Elijah was dedicated he was the one that did the service on Mothers day 2003. He said to us last week that it seemed like we had come full circle. I just sat through the service knowing the magnitude yet somehow forcing myself to be numb. Even though I was listening to them, I sat and starred at my little bear (looking very handsome in his little navy sweater vest and Blue shirt, same as his daddy’s shirt) he looked so peaceful. I just wanted to snuggle with him.

Over the last week I have spent it bossing people around and making arrangements with Chad and family. I look at myself and see that I was filling the void of caring for my sweet Elijah. It is when I must take care of myself that I find it most difficult. I don’t know how. Grandmom is still here in CO with us for a week or so, and then we will be on our own. Chad and I will be looking to the days without Eli and attempting to fill a very big hole. I guess the feelings I have are not what I thought I would feel. I find myself telling strangers about my little guy with a smile on my face and joy in my heart. While picking out my clothes and getting my hair done I talked to new people about my son. Yes! I told them of his passing and what a boy he was. Their tears fell and yet I kept going. I think to myself why don’t I stop, or can’t I just go about doing something and remain anonymous. I loved my sweet boy so much and I will always love him. I talk about him so much because I AM SO PROUD of who he was. My little light, my sunshine bear. Elijah! mommy will always love you, Forever and ever and always.

The sadness comes and goes. Mainly for me it is at night. The days are being filled right now with stuff that needs to be done. It is night when I so admired my baby boy sleeping so peaceful in his bed. I know that the sadness is only beginning for me. As the days go by and this dream becomes reality my arms are starting to feel very empty. I loved to spend time with the kiddos in my family in all there are 6nieces and 4nephews. Each time I see them, they have grown more into who they will be. The kids always make me smile. However after spending some time at the hotel swimming on Friday night it was terrible hard for me. We spent time with our family laughing and playing around all the while I was missing so much. I thought so much of Eli in the water. My heart ached. I got tired so fast and just wanted to come home. The hole in my heart was open and oozing for Elijah. That night I laid in bed, I cried and cried until I finally fell asleep. I couldn’t hold my little bear to make it all better. That is what I did whenever I had heartache. He always made it better.

Eli’s Angels News: I know that some of you little Angels got your birthday gifts and December packages already. I wanted to thank both of Eli’s Papa’s Dave and Dan for taking time to hold up the line at the post office. It was for a good cause since I could not do it myself.

Last: I have been to many of our CB buddies sites. Thank you all for honoring Eli with your wonderful messages. Some where so overwhelming. I haven’t the strength to respond sometimes yet know I appreciate your words. I always found it easy to love and care for my son it was never a chore or a question of doing what I did. Then I read the pages of people that know him only though photos and the moments Chad and I have shared and see the love for our Elijah. So many people were affected by his life and by his death. We are not alone in our grieving. I am sad that others hurt too although I realize the impact a little boy had on so many and again I am so proud of my Son.

Thank you to all who have held us up and supported us. To look at each act of love for us just brings so much joy to my heart. I give God the credit. We are so fortunate to have so much love surrounding us. Oh how lucky we are. What a lucky women I have been. The time I had with Eli was such a blessing. I had the most of both sadness and joy. Most people cannot even say that they have ever experienced such a love.

Please keep your prayers coming for Chad and I. This is so hard for both of us. We are just taking it minute to minute, eventfully we will get to hour to hour and maybe someday take it a day at a time.

Sunday, November 27, 2005 3:12 AM CST

As you can all see above I have posted some important information and moved some things around. First of all we are so overwhelmed and comforted by all of the wonderful ways that Eli’s life has touched so many. I sometimes thought myself nuts for opening my world to anyone that would read. Then after spending hours the last couple of days reading so many comforting words from all who signed the guestbook I know I am not totally nuts. It fills my heart with such love knowing that so many loved my beautiful little boy. How oh how we were devastated when we learned of his horrible disease. This journey that we are traveling has brought the most joy along with the most unbearable pain. I guess to truly understand deep love you must feel the both.

Even though we have done many of the arrangements I still think that my sweet Elijah is in the other room with his daddy. It is becoming more real but isn’t yet. Friday my body underwent so much pain my stomach couldn’t contain anything. I spent the entire day staring at our toilets, which by the way need cleaned. Funny that only in bad moments do we see the things we slack at. Right now things are busy and our minds are full. There will be days soon that our house will be lonely as it will be just us. I am tired, spent and empty. There is so much to do and so much I cannot do. Now that we are thankful for all of you. The words of comfort have been read by me and Chad many times over and will help us get through this most difficult time.

God Bless
Eli’s Mommy

Friday, November 25, 2005 12:37 AM CST

I am deeply saddened to tell you that our beloved son Elijah earned his wings at 4:30am this morning, November 25th. As most of you know, Elijah was a fighter and beat the odds. His prognosis was that he would live to the age of two at most. Well, my little Eli fought his way to 2 years, 9 months, and 10 days. He was without a doubt a true Angel on Earth and touched so many lives. Ann and I cherished each day with our Bear, but nothing could prepare us for his passing. Elijah was loved by so many and for that we thank each and every one of you. Without your love and support, Ann, Eli, and I would never have made it this far. I know my Elijah is in a better place; sitting at the throne of our Heavenly Father. I know he is running through open fields, laughing and playing; no longer restricted by his Earthly handicaps. This is some consolation, but a huge hole is left in our hearts. Never to feel his touch, hold his hand, or snuggle with him before bedtime. Please pray for Ann and me as we struggle through the coming days, weeks, months, and years. Please pray for Elijah, returned as an innocent to our Creator, much like the prophet he was named after. Into the Heavens on a chariot of fire; our Elijah now waits for us to some day join him.

Chad & Ann

Saturday, November 19, 2005 9:44 PM CST

Today wasn’t a fun day. Eli has had many seizures and they are the really bad ones. We are not sure what is causing it. He is happy now that he has a rag in his mouth so I guess we are back to the mouth pain stuff. That poor kid and his teeth. Me well I was driving myself nuts doing very little and yet my head felt like it was one thing too much. Eli is laying in Grandmom’s room watching TV chewing on his buzz Lightyear towel in his buzz Lightyear pajamas. I sure hope he doesn’t have any more yuckies tonight.

Amber update: I took her to the vet today to get her leg checked out and to make sure that it wasn’t infected. The cut still looked really clean yet it was in a bad spot so they had to put her under, reopen the wound and then stitch it back up. A few hours and dollars later she was home groggy and not looking real happy. Well at least I know she will be ok.

Eli’s Angels News:
We still need lots of Gift Card YOU CAN HELP! Provide a dinner for our families in Eli’s Angels.
Purchase a gift card and have it sent to Eli’s Angels P.O.Box 423 Eastlake, Co 80614-0423

Eli watching Finding Neverland with mommy. Ok listening.
Image hosted by Photobucket.com

Thursday, November 17, 2005

Dog days:
Grandmom is coming tomorrow. She is hitching a ride with some friends driving out for a wedding. Way to go grandmom on saving gas and a lonely drive. I look forward to giving her a big hug when I see her. She had a difficult day today. Garth, her dog and Amber’s daddy was not doing to good and had to be put to sleep. It was a really hard thing for the whole family. Strange the way life works. Amber’s brother Barley became a dad and his daddy Garth went to doggy heaven. Hmmmmm if it were not dogs you would think it was a soap opera. In other Dog news Tuesday night I took Amber out and when she came back in she was limping. I laid her down and saw one horrible cut. It was dried so it must have happened on her last trip outside. Anyway I was really worried. She wouldn’t put any weight on it. I shaved it cleaned it and wrapped it. I had to really work to get her upstairs. Two days later she is doing much better and she is at least putting some weight on it now. Each day that I clean it and wrap it I just shake my head. Don’t I have enough medical stuff to do with Eli and now I have a daily bandaging date with the D. O. G. Crazy this would that we live in. To tell the truth, she is my buddy. Since Eli was born and Barley has a even better home then we could give him, we are stuck together. She is pretty selfish yet that is why we love her so. However with all this new attention do to this mishap I hope she doesn’t get any funny ideas about doing it again.

Elijah the sleepy guy:
Eli must have known it was cold and yucky outside today. He slept the entire day. I think total he opened his eyes for 2hours. We almost have him off of the Valporic Acid. That is a good thing. It has taken a while. He has do the holding of the head a few more times. Of course I have to show my strong guy off. He needs to poop. It will be a regiment of miralax and message tomorrow in hopes he turns into a poop factory. Other than that his stats are good. Maybe he is resting up for grandmom. Tonight we had a movie night in Eli’s room. We finished watching ER and then we watched Finding Neverland. This was the first time I had seen it. I really enjoyed it. Eli and I rocked for a while and then I propped him up in the chair and ohhh he looked so cute. So big. I have to sit sideways to hold him so when he sat in the chair by himself I laid on the floor and just rocked the chair.

All in all a pretty boring week. I LOVE BORING. Now I am really tired but wanted to update before the weekend. I love you all and God Bless

Ann

PS. I just tried to post some photos. It looks like you all have to wait. I use Photo bucket and well it is closed right now. LOL. So you will have to wait. Darn the pic of him in the rocking chair is too cute.

Sunday, November 13, 2005

Alright Folks,

I have been bad about getting to updates. Tonight I want to be ahead of the game, it hasn’t even been a week. Yeah for me! There are a few things I wanted to share. Bare with me this one is all over the place…

First off GRANDMOM’S PRAYER:
I want to thank you all for storming the heavens for a seizure free day. On 11-12-05 in the afternoon I started to think “I haven’t seen any really bad seizures today” I hoped that would not jinx it. So around 10:30pm I put Eli to bed. Still no BAD seizures. I thought again to myself WOW! I went into the office(Next door to Eli’s Room) where Chad and I were playing with our computers. Elijah was sound asleep and might I say as cute as he always is. Sweet and peaceful like always. Then it happened. I stopped everything and went to be with him. Sure enough it was a really bad seizure. He was screaming and smiling. The two things he hasn’t been able to do in 2years outside of it being a seizure. It soon ended and I thought to myself. $!(# #$#$Ok that wasn’t nice but true. I am a pretty honest person. It wasn’t until I was talking to grandmom tonight about something else when it hit me. God did answer our prayer just not the way we think he would have. You see we asked for one seizure free day. We think of a day as 12am until the date changes at 12am 24hours later. I am going to say that YES Eli went more than 24 hours with out one of his bad seizures. Now can’t we consider that a day? I know that I always see the bright side of things but you must understand. These seizures normally are bad in the afternoon and evening. So in my mind I am excepting this one for God Answer. You can look at it as you may. Just to clarify one thing. Eli has several kinds of seizures. Most of them only last a second or two or go unnoticed. I didn’t count those in this request. I consider those are just part of everyday life. The screaming ones are the kind you drop everything and pray they stop. Praise God for helping a little guy out for at least 24hours. So like Grandmom said “Let’s give credit where credit is do” Give it to GOD!

Are you a glass half full or empty? Most of the time I am a glass half full and I am always looking on ways to overfill my glass. Every so often I look at my life and see that glass half empty. Not too often but I do. This week I swear it is a women thing. I have been thinking a tremendous amount about LIFE… I can’t even begin to share the wacky things that go through my head as they don’t even make sense to me. What I do know is that if we spend our time in worry about things that might not happen we MISS the good things that are happening right now. Be thankful for today and don’t put too much worry into tomorrow. Things change…

Here is another really really awesome thing that happened tonight! No not the Broncos win over the Raiders. Yeah that was cool but something that doesn’t and hasn’t happened for over 2years. I went to pick Eli up out of his lovesac for some stretching and he gave me the best gift ever. I grabbed both of his hands and pulled his arms until his body was starting to lift. I was then going to grab is head. I hesitated for a moment and ELI DID IT HIMSELF! His truck control weakened about 3months old. When the doctor would pull his arms like that his head would just hang. Tonight his lifted it and pushed it forward. Yes, when it went forward it flopped but the point being he lifted his head all by himself. Ok ok for those of you that might get the wrong idea. Eli is not getting better. It was just something I am thankful I got to see. I was really excited. Daddy ran to the store so when him came home I told him what Eli had done. He had his own way of being thankful. As those that know Chad can picture. Anyway I had hoped he would do it again for dad. Later when daddy was watching I tried to see and he did it again. Not as fast but he still did it. It was really cool and you can bet I will try tomorrow and even if I never see it again I can smile about it.

This is a personal note that most of you don’t and won’t understand. So please don’t worry if you don’t get it.

Congratulations DICK on your 15 new Grandbabies. Congrats Barley on becoming a dad. Smiles all around…
I made the calls to the great grandparents already. They couldn’t believe 15. I pray they all stay healthy and create plenty of mess for those around. How fun! Thank you so much for sharing and keeping me a part of your lives. I thank God for hand delivering you to Barley every time I think of that Big loveable guy. You came in just as a young family was hearing the worst news they could and took some of the load off. During this whole journey when I think of you Dick with Barley there is nothing but happy thoughts and thankfulness. I always tell people when they ask about Barley that it was a “God thing” and proceed to tell them the story. Weather they believe me in the end or not I don’t know. I do know God had his loving hands around the whole thing. Thank you, Kenya for putting all of this in motion. Some people might not see the impact of this situation and see it a silly. All I can say is that I know the impact these people had in my life and I am thankful oh so thankful…

I will end this message with this. I am thankful everyday of my life. Ok I do have my moments yet I remain thankful. I always use this month as a true reminder of what I have. I call it the thankful month. Why should we all just say what we are thankful for one day of the year? So I extend this to all of you who are a one day a year kind of person, Make this month 30days of thanks. I just bet you will be a different person in the end. Silly me I guess Thanks giving is just next week so maybe you can still have a couple of weeks of thanks. Just be thankful for what you have. When you see a child as precious as my Eli don’t think of all that sucks for us (We do that enough) look at your own children and thank God for all that they are.

Ann

Wednesday, November 9, 2005

Today was a pretty good day. Eli was up bright and early until daddy brought him in to snuggle with mommy. Then it was lights out. I think he was up do to a little mouth pain. Still every few days those darn teeth are an issue. I promised to go swimming and that is what we did today. I dressed him sleeping, put him in the car, took him into the locker room and he woke up when I put his wet suit on. Yep! He did wake up. He did really well for 30min. I was about to take him to the hot tube and he started growling at me. Those of you that have ever heard Eli growl know he means business. That is his little way of saying DONE NOW. He doesn’t get mad often so I know he means it. We skipped the hot tub and headed for home.

Mommy and daddy got flu shots last Thursday. Eli gets his tomorrow. Ouch. He hasn’t been poked since his RSV shot last march I think. Poor guy I feel bad. Now for those of you that wonder about the whole vaccinations with mito kids. Yes! Some kids to have negative adverse affects. Eli has done fairly well with it. I can’t say this time will be the same I just pray that it will help KEEP him healthy. When you have a kiddo with a disease in which their whole system is compromised it is always a tough call on what way to treat or to treat at all. There is no standard because each child is SO different and presents different symptoms.

I am still plugging away at Eli’s Angels Christmas stuff. Still so much to do. 56 kids are now in the LITTLE program. I am so thankful that we have been able to send the monthly packages out and planning for Christmas. It is still amazing to me. I pray it all comes together and shipped out before Christmas. Yeah that would be nice…

God Bless all of you…
Please say a few extra prayers for Natalie who is still fighting hard. I also ask you to say a special pray over all our little ones in Eli’s Angels. Many of them are already showing signs of winter. Please pray that they are able to heal quickly from the bugs that have them fighting.

Ann

Jenny you have been on my mind a lot lately. Give those girls a hug and kiss from auntie Annie…I miss you guys.

Tuesday, November 8, 2005

Early morning!
Hello Everyone! It is a gorgeous day here in Colorado. Wow! I will feel guilty if I don’t get out to enjoy this warm November day… Plus our brat dog has been driving everyone nuts. Jo comes today and well nothing else going on.

It has been a week since my last update. Eli’s O2 has been better. I am still using Blow by at night. I do think it helps him sleep.

Later at night!
The boys are in bed. Eli is sleeping like a sweet little angel. As always. Daddy is in bed I don’t think sleeping yet…Sorry to say he has a few really bad Yuckies (seizures) today. I know that you all have been praying. Thank you and please keep praying. He had tons of gunky stuff tonight and all today. He was getting most of it up. The suction machine was working overtime. He has been lots better since his nice warm bath. He always loves the bath. Monday Eli’s vitals were all normal for him and his O2was good as well. So all in all he is doing all right. I know you are all going to wonder about me but this is the shortest update in a long time.

Tomorrow I promised Eli swimming Help or no help. I told myself that I wouldn’t do it by myself again yet I told my little guy that mommy would take him this week. He is getting a Flu shot on Thursday so tomorrow it is. I always pray for poop well after being kicked out of the hot tube last time due to his age. I pray that the poop comes before or after swimming.

That all folks. Going to bed.

Ann

Wednesday, November 2, 2005 2:08 PM CST

All Right all right… I will do another update.
Not much going on around here. Eli is doing ok. Today is a beautiful day out. Eli and I are going to try to get out for a little stroll. As for his health he is still having a few days where O2 is needed. It is now routine to run Blow by at night to help him out. The last week or so he is gunky I mean really gunky. Spiting up mucus whenever he gets a chance and of course slobber. He has done really well keeping his lungs clear. We did do a neb treatment to help him out a little last night and today he seems to be doing ok. Seizures are still has a 2-4 bad ones a day. I think that is really good considering.

Let’s See Eli wore his Bear suit on Halloween. He did his rounds to his 3 houses. The weather was great except I think the cool breeze really had him coughing. I am glad we only did the 3 houses. Daddy pushed and mommy spent the time picking up Amber’s Clown hat. Oh yes! It was the first year for her being dressed up. She was a clown. She didn’t like her hat and after you see the photos you will understand why I did it.

I have still been hard at work on Eli’s Angels stuff. Holiday stuff is hard to get delegated. I am greedy and want to do it all. I do realize nothing will get done if I think I can do it. So for those of you that know me and live in our area. We are going to have a little wrapping and packing party. Please email me for details: akurtz1974@msn.com

Provide a dinner for our families in Eli’s Angels.
Purchase a gift cards and have it sent to Eli’s Angels P.O.Box 423 Eastlake, Co 80614-0423
The Gift cards will be distributed to our Eli’s Angels families for Christmas.
Please send me an email letting me know what was purchased and who you are. Thank you for helping us out.

Please Keep Natalie in your prayers.
Ann

Grandmom’s Prayer: I talked with Eli’s G-mom tonight for just a few minutes and she asked me for something. I could have just asked except I wanted you all to know this request comes from a heart of a grandmother. A heart that was also torn when we learned of Eli’s illness.

Please join us in praying for something specific. As you bow your head, fold your hands, meditate in the quiet or however you pray for those around you say a special one that Elijah could go just one day without a seizure. ONE SEIZURE FREE DAY

As this request was shared with me it brought up so many of my insecurities in my own faith. I do believe in the power of prayer. I do believe in Miracles. I guess in my mind it is all about HOPE. I try not to give myself false hope. You see this is so hard to explain with out all of you thinking oddly about me. I have always been pretty open with all of you even those who I don’t know nor will never know. I am almost scared to share these feelings on this site. In good ol Ann fashion here goes. In some ways I am glad that all HOPE was taken away when they told us what Leigh’s disease would do to Eli and that any future children could be affected too. It is like we lost our present and our future all at once. Some of you might understand this: When our hope was lost we concentrated on what we had left. We have one beautiful little boy that needs us. We concentrate on loving him and giving him everything we can. We couldn't think of anything but being with our beloved son. That time and every moment I have with my Eli will always be cherished.

As much as I am an optimist as those of you that know me well have seen, I also am in the business of protecting what is left of my heart. The heartache that already exists in my body it too great to open up for more. I have seen God work in many ways. Large and sometimes very small yet, I am always grateful. I will always be grateful for the answered prayer of a young women that wanted a child so badly. I will always be grateful for the time I was allowed to be Elijah’s Mommy.

I will join all of you in this prayer. A grandmothers prayer.

Cheryl I hope you approve I did the best I could.

Saturday, October 29, 2005 1pm

I just got a call from Ann E. telling me some news. One of Eli's Angels Members is not doing well at all. At this time I am calling all of you to storm the heavens for little Natalie. She is on a ventilator. I don’t have any more information. Natilie and her family NEED PRAYERS NOW.

Please drop by and leave some words in her guestbook.
NATALIE

Friday, October 28, 2005 9:23 PM CDT
Hello Everyone! Oh boy it has been a busy busy week. Just doing the same ol stuff. I wanted to get Eli out of the house so Wednesday we went swimming at the Thornton Rec center. Yep! Just Eli and I. I had a huge workout. It took a lot out of me. It was well worth it. Eli and I had lots of fun. We even got kicked out of the hot tube. Eli of course is one 2 ½ so he is not aloud. I kindly told the (young)man “Eli and I were leaving in a few and we would get out soon”. I think he wanted us out right away. I didn’t care. I had my next line ready had he pushed the issue. After that we packed up for home. Wow! I still can’t believe we did it without any help. My back sure could tell when I went to bed. Still worth it. I would like to do that often and I have already started to recruit help. Maybe Eli will get a weekly trip to the pool and at $6.50 for our 30min swim it is a good thing Eli is FREE. Not me but oh well.

Chad is right now working on adding all the new members. He had to do changes so it isn’t up yet. It will be up soon. Check it out. We now have 53 members. Some of them are not pictures as we do not have photos of all of them yet. I hope soon.

Anyway. We are all doing ok. Eli has been awake and showing his blues off the last couple of days. I have been enjoying the heck out of it. So beautiful.

God Bless
Ann

Monday, October 24, 2005

8pm- My mommy and Dave left Sunday morning for home. Yep! We had a lot of fun. Well we did my mom had to work the whole time. We ordered Eli bear Halloween costume online and it never came. Last check it will be here on NOV 1st. NICE…. We decided that we would go to Joanne’s store and get a pattern and have mom make one. Simple! That is just what we did. We were there for over and hour just getting fabric and all that we needed. Then I call Christina and in listed her sewing machine for my mom to use. I have one, but this job was much too large. Long story short. Mom got to work right away and had enough on it done Friday night so Eli could go Trick or Treat at the school that is right up the street. The amazing thing to me is that once all the neighbor kids found out Eli was going, they all waited for him. Oh how they care. Little hearts always so pure. It was lots of fun. Kayla held Eli’s Bear bucket and Grandma pushed and me I held the camera. Funny how much candy a little guy gets when he cannot eat any of it. Still it is an experience. We like him to do whatever he can. If that involves candy well we will put in the fridge until I end up eating all of it. Poor me…..

He has been gunky for two days now. Extremely gunky. I want to give him meds to dry it up but I feel then his chest would get tight. Oh the decisions. Always tiring to find the lesser of two evils. Ok will finish the update before bed….

Later- Well Chad is sleeping Eli is sleeping and it is still fairly early and I am headed to bed too. Just wanted to finish. Hummmmmm where was I. Oh yeah. It was nice to see grandma and papa even if we kept them moving all the time. Thanks mom for Eli’s little bear suit. It is bearirrrrfic.

Today. Oh man. I am beat. Too much in one day for little ol me. It was a triple “C” morning. Chris, Cindy and Christina all before 11:30 then Eli and I headed off to have a nice relaxing lunch with Colleen. Whoops did I say relaxing. It was great to see Colleen. We ordered our food and I settled in to feed Eli. Got his bag out opened it and realized I forgot a feeding tube and syringe. It is at these times I want to cry most when my sweet little Eli cannot even have lunch because I forgot to bring a tube. My everything I have to take for an outing is vial. It is never a quick drive through pick up hand the kids their sacks and off we go. We ate our appetizer and had the girl pack the rest and headed for home. I still feel horrible. I know for those of you that are going to write that I shouldn’t I KNOW. The problem is reality. Eli could not have lunch on time all because he cannot eat. You would think after two years of doing this I would have put those extra tubes in the proper hiding places. I did check them. I usually have extra stashed somewhere just not today. Regardless Colleen and I both waited to eat and well all three of us ate and hour late.

I have been filled with a wide verity of feelings all on my own. Then to think of all that goes around me. I ask you all to pray for our Church. When we first visited there I was 8months pregnant and they were in the midst of a pastor search. They spent many months searching and found David. He stayed with our church for one year and now it is time for him to move on. This puts North Metro at the beginning of yet another pastor search. Through this church I have grown and met so many WONDERFUL people. These times are always difficult on churches. Pray that God leads that right person here. We attend church when we can yet they feed us every Wednesday and surround us with love. No matter they have been there for us. I pray for those in the leadership roles. What a task they have ahead of them. They are all worn and I am sure it is a roller coaster of emotions they have been on. I have never in my life been around such GOD filled people. To me it is if God is saying you guys don’t need a pastor! You are doing fine without. The truth is that we do. I never really got to know David in the time he was here. I too pray that God works in his life and all that he teach people. I also pray for those that had become close to him and his family. Their hearts are hurt. I pray for our Church. These things are the world around me. Even though in my realm of reality I face deep emotions everyday. I do pear out to the world and see all the others must face also. Then I look at my son* He is perfect-Beautiful-He cannot see the wrongs that I do- He doesn’t know hate-I say that is a wonderful thing.

Last I wanted to say a BIG THANK you to a couple of people:
Christina C-For letting my mommy use your wonderful sewing machine. Let’s not forget all that you do for others.
Stacey F-For the awesome shoes for Eli. I can’t even begin to explain how wonderful they are and how great they fit. I can’t because you can’t see the happiness on my face. I have tried and returned many shoes this fall already. Your Cozy Toes slipped right on to perfection. YEP Perfection. You can’t get better than that. Matter of fact he sported them on our outing today. Thank you

I do have photos to post but as I said I am going to bed. Good Night everyone.

God Bless
Ann

Thursday, October 20, 2005 2:33 AM CDT

Alright for once I will leave the time up so you can all see how naughty I have been. It is well 1am. I should be in bed. Well my excuse is the I normaly will update after I put Eli to bed. I got to my computer and I know I am tired because I found myself aimlessly wondering around the internet. You just never know what things you can find.

Eli has been up and Down. The last couple of days have been good days. A little less O2 needed and he has shown mommy his beautiful blues that ohhhhhhhh MELT me in and instant. I cannot remember the last update date so I cannot remember where to start from. So I guess I will ramble on.

This week has been so beautiful out. I have made it a point to take my sunshine (Eli) out into the sunshine for a walk or run to the post office or something. It rained Weds. but we still got out. Eli and I got to do the best thing in the world. We got to give his old Kid Kart a good home. Without too many details I know it found the right place. A beautiful little girl will hopefully enjoy it. I was soaring on the clouds after that. If felt so good to connect someone with some needed equipment. I KNOW HOW HARD the battle to get that stuff is. Now they don’t have to wait any longer. We also ran by the post office and got out the last of the new members beginning packages. So if your child is waiting email me if they don’t get one. Hummmmmmmmmmmm

Now Eli is sleeping-Chad is sleeping. Me well I am writing all of you. Crazy. Really I don’t want to go to bed yet. My MOMMY is coming. Last I talked to them they were 3hours out. That means any time now. I already have their bed turned down so they can crawl their sleepy heads right in. I can’t wait. Mom and I have some work to do. I don’t sew and my mom and Chad’s mom do. That means every time one of them comes to town I hit the fabric store and put them to work. Cheryl had the task of making Eli new blankets for his make a wish trip. He just had to have new ones that matched the parks. Example: he has a blanket that has fish-dolphins and other sea creatures just for the day a sea world. My mommy gets the task of making Head supports and covers for the new wombat headrest. Oh yeah she doesn’t know it yet but she will in the morning.

Special thanks to Christina C for brining Dinner buy Weds. and Risha for making it. You two are such a tag team.

Oh yeah this is for CHERYL…… Tomorrow we are taking them to Sams. I know you will miss that trip. Ha HA Boy sometimes I think I am so funny. If it I couldn’t laugh at myself well nobody would.

I cannot forget to tell you all about the latest in the POOP NEWS! This is a good one so pleas hang on. I was looking at the poop dates that we post on the fridge and well it was time again. Elijah needed to poop. Mommy did some exercises and Miralax. Still no poop. Then I snuggled a little and laid him down for more movement work and YEAH Poop. I always know when it isn’t enough. I tried to do movements so he could finish and nothing so I gave him a really nice hot bath. He loved it. Then it was off to snuggle with daddy in our bed. We were all quite comfy when Eli was coughing and that means it is time for mommy’s shoulder for a little CPT. I grabbed him from daddy and put my hand under his tush and ohhhhhhhh yeah he was a cream filled muffin. You know the one that drips everywhere. I said Ahhhhhhh Ohhhhhh and daddy says nicely DID HE POOP? I took one look at my hand that at this time was covered in caramel filling and then looked at Chad’s chest where I got the little bear from and laughed so hard I almost filled my pants too. There in plain site was a pile of caramel muffin filling laying on Chad’s tummy. I cannot forget any details for your guys. Ohhh Yes there was a nice stream all over both of the comforters that we have on our bed. I took Eli to his bathroom and there I got my first glimpse of my PJ’s Oh Yes there tooooooooo. Huge spot of caramel filling all over. I traced my steps to the bathroom. We lucked out. Only a few big messed on the bathroom floor. I cleaned Eli , put him to bed, Helped Chad out. Took all poop covered items to the poop wash and started what would be Three loads of laundry. I haven’t yet made sure it all came out and I really don’t care. If my Pj’s are stained for the life of them I will remember how funny it was. I hope you all enjoyed this episode in the Eli poop saga.

Wait –the weather is changing and getting cold. We had to turn the heat on today. Boooooooooooooooo…. I guess it is October.

Going to bed now.

Ann

Sunday, October 16, 2005

Broncos 5-1 It almost wasn’t. Yet they pulled it off.

The weather has really been in control of what we do lately. Except I LOVE IT…. The weather isn’t too hot or too cold for Eli. Friday we even got out for a little walk. I think it did us both good to get out and enjoy some fresh air. As you can see we made it to the pumpkin patch this weekend. Yep! We got our photo. Believe this. The photo above is one of maybe three or four where his eyes are open. He decided that he was going to sleep in that pile of hard orange things. I kind of felt bad. He just wanted us to pick him up. I think what he needed what G-mom. She has been here every year that we have done the pumpkin patch thing. Chad even said before we left my moms not here. Still we did it. He made it one more year.

Today was another Football day. I like to watch but I think after one or two games a day I am burnt. It just tires me out. Isn’t that what highlights are for.

I have been trying so hard to focus on the good stuff. It is just all those constant reminders that things are not really as good as I want them to be. It seems to me that time is slipping away. I am a little lost. Chad and I were discussing Eli and death. This is not a new conversation. For some reason when I put him to bed I just sobbed. Here it was looking me strait in the eye. What did this mean? Now this is and odd thought but I was really thinking I don’t want to start the rest of my life NOW… There is so much wonder of what will become of me once Eli is gone. Will I go back to work? How will I find a job that could ever compare to being Eli’s Mommy? YES! Please all of you don’t worry. These are just thoughts I felt like sharing. I do not let them eat at me and I will not. To some this all up I know that you all have seen that J&J commercial that says HAVING A BABY CHANGES EVERYTHING…Since I have been home with Eli I have heard that one thousands maybe even a million times. It was around august 2003 when I wanted to start throwing shoes at the TV… To this day I still hear is about ten times in a day. I know how much having a baby changes everything. My problem is that not having Eli WILL change everything? Then what? I guess the root of the problem is that with Eli sleeping so much I don’t feel like much of a mother. Sure his needs are met. I make sure of that. It is the extra stuff that I miss.

Oh yeah I almost forgot. Eli's Grandma and papa are coming this Thursday. It will be nice to see them. We are really greedy. We always hog up their time. Sorry Jen, Don't be mad at mommy. LOL

Elijah in his new Buzz Lightyear PJs. It is so hard to find them for my boy. He is so big and the PJs are either too heavy or too light. Get this they are a size 10….Wow Well PJs do run small.

Thursday, October 13, 2005 7:07 PM CDT

Ok I really don’t have anything exciting. Just wanted to update on what is going on with the little man. He has been going through many changes lately and well we have seen thing change which he has always been so strong at no matter. The O2 thing is a little wacky. Chris has been checking him and he is not messuring at what he has always been. He has ALWAYS done real well on room air. I have been giving him Blow by (laying the mask next to his face) at night to boast him. Today while he was flat on his back he was really good. Then we put him in his new wombat chair and down it went. All the way to 70… I could tell by looking at the discolor in is checks so we measured it and yep. Now the new plan is to run O2 at night and during the day. He is not yet dependent on it and I will keep it that way as long as I can. Everything else was same ol Eli.

We did go to the bookstore today. He really wasn’t into it. He just sat in his chair looking miserable. When we got him I scooped him up for some NEEDED snuggle time. When Daddy came home he moved his arms as much as he could so right now he is sitting with daddy in the chair. Snug and sleeping. Me well I lazy… I ordered pizza for dinner. It should be here soon. I just wanted you all to know what was up.

Oh we are hoping to get that October 2005 shot in this weekend. It should be nice enough to get to the pumpkin patch.

God Bless
Ann

Monday night, October 10, 2005

Hello everyone. I know you have all been waiting to hear something from us. I updated this on Monday night. It was there when I left my Computer. Good thing I do my updates on Word first a little cut and paste and I hope it stays this time around. Thanks Sarah for letting me know.

The weekend was pretty quiet. We knew it would be the last nice day in a while so we did the yard work and Chad finished up some of the weather proofing. Eli spent most of the weekend snuggling. Chad and I just took turns. Two hours here and two hours there. He is really fighting some bad tooth pain. I have been brushing his gums and I think we got them both through. Now all we need is for them to come up a little more. Otherwise this will be a constant battle as the gum grows back over the molar again and again. Sunday he had 4 really hard seizures and of course several others in-between. Anymore I only count the big ones. Anyway after the 4th I laid him down brushed his teeth and ended up with a bloody toothbrush. That was really good though I felt bad. He felt better. He closed he eyes and enjoyed he neb treatment. No more seizures that night. He only had two bad ones tonight and I think those had a lot to do with his teeth too. We are doing the Tylenol and Ibrophen combo to help and it does. His temp gets all screwed up his face is hot to touch and his body is cold. I cool his face down quickly but wait before I heat his body. YES! That is a tricky thing. Knowing is difficult. Chris was here today and he seemed the normal Eli except he hadn’t been awake yet. I think it is because of his hard Sunday and the really cold day outside. She has been checking his O2 and this is the first time he has gone into the 80s and stayed there. She said it could be because he was sleeping pretty hard. Maybe she was making me feel better. We put O2 on him and POP. It went right up to 98. We haven’t been using O2 unless he seems to be breathing hard. Know I will be running it at night and when he is resting hard. Other than all of that it is pretty boring around here. We didn’t even leave Eli’s Room until 4pm and even then it was to go downstairs to snuggle. It was a LAZY day.

Right now Eli is in bed. I am up to make sure his temp stays down. His sweet little face is still flushed. He is on oxygen and before I go to bed I will give him another dose to help with the darn tooth pain. I feel so bad for him. On one hand it is nice he is fighting something normal but in the whole scheme of things can’t my little man be left alone. He opens real wide and lets me look, just as long as I am brushing and WOW those new molars are huge. I would be in pain too. Please Pray for those babies to come up out of the gums quickly. The less days of this the more time we can concentrate on the REAL problems.

Oh, those of you waiting for the October pick. Well it will be a few more days. Denver got hit with some really cold weather, even snow in some parts. It is still funny to me that a city can be so spread out that parts can get FEET of snow and others (luckily us this time) only get rain all day. Crazy city! They say that it will warm up this week for a couple of days so maybe we will get to go then.

God Bless and have a great Tuesday everyone.
BUrrrrrrrrrrrrrrrr It is coooooooold.

Wednesday, October 5, 2005 2:00 PM CDT

Ok Here goes. Eli has had a bit of change in his breathing as long as Chad and I stay on those Nebulizer treatments. He loves them. He looks at us like THANK YOU mom or dad… His stats remain the same. Strange kid. I can tell that he has taken another neurological step down. His breathing is different he is Sleeping a great deal and the worst is that his ability to cough is about 50percent weaker. He is having a some trouble with the 2year molars which seem to be the last few months. It is taking them so long to come in because he doesn’t chew and when I give him something to bite on it is hard to place it all the way back in his mouth. The best thing for this problem is his spongeBob spin toothbrush. He loves that thing. He opens his mouth (which he never does) and lets me brush his back teeth. I hate to tell you all that the end is near cause we just don’t know. I hate the neurological changes. Sunday Eli was able to get a little poop out yet it was not enough. Good that he did a little on his own. I gave him 24 hours and then we did what I call “pushing the poop” We do a session of tummy rubbing and then last a suppository. It took about 30mins but it worked. He got lots out the Eli playdoh factory. Sorry for those that are afraid of the POOP all I have to say is POOP, POOP, POOP. You are reading the wrong page cause POOP is a great thing to hear about specially since is takes almost 7days each time.

The weather has been changing dramatically over the last couple of days. I still haven’t given Amber a bath. I asked Chad if it is ok so I might sneak up and drop Amber off at the dog groomer today. We have been going from Air-conditioning to heater almost every day. I can’t open all the windows because the stuff blowing around outside really gets to Elijah and I. We don’t need that. They say it is going to freeze tonight. Yeah,,, That means I am supposed to cover all my plants. Hmmmm I am so lazy that I just might cover Elijah’s Garden but the rest are going to have to suffer. I know I am mean.

Chad has been crazy, trying to winterize our home. There isn’t much we can do that we are not already. They say the energy costs are going up up and away….We do keep our home on the WARM side. Chad and I have to suffer all because of Eli’s little control system does not work. His feet freeze at night and most of the day if it is at all cold in the house. Last year we got smart and bought a heating pad with a two hour shut off. I put it under his feet and turn it on right away. One his feet are toasty his stays warm. Plus his Grandma G made him lots of Fleece blankets that we bundle him up. The only problem is with the nero damage you just never know when it is going to be too much. For the most part Eli is cold but every now and then he will be tooooooo hot. I drive myself nuts at night decided how to cover him. I really hate myself when I go to check on him and I choose wrong and I have and Eli-icicle or a blanket burring Eli.

It has been hard for me the last few weeks. Unwinding from our trip I have been forgetting to take my medicine and I can’t sleep at night. I just can’t seem to level out and well it is all my fault. I need to take my medicine and get some sleep. All of my wackiness plus these changes with Eli well you just never know which me you are going to get. Yesterday it was the running 500 miles an hour Ann. I was like the energizer bunny. That is what happens when I don’t get the sleep I need. Last night I got lots of sleep. Chad brought Eli into lay with me and well we over slept together. I knew it was getting late it is so hard to put him down when we were both so peaceful.

Last a bit of CRAZY news on the Eli’s Angels wagon. We have so many member I haven’t even put them all into the program yet. I think we are at 52 yep That is FIFTY TWO members. Wow! At the beginning of the year we planned on 50 or so. Well we passed that. I sure hope all of you that read this can help us out for Christmas I have some nice plans but NEED HELP please Email me for details. We have been busy so if you are waiting to see them all up on the homepage it may take a while. Even so they are in the program and will start receiving their packages. Also we are waiting on Photos so we can share all the new members with you.

God Bless and I pray all of you have a beautiful day…. Hopefully I will be in the mindset to update sooner. It seems there isn’t much to update with the new change. Each day is the same. Eli sleeps and Chad and I do what we can.

Ann K "Eli's Mommy"

Friday night September 30th 2005

Sorry I have been so bad about getting and update in. I have been naughty. I come to my computer and do other things. Always read the guestbook and email. It makes me smile at how many of you care that I haven’t updated. I don’t mean to worry you all. I procrastinated my way through High School and Collage. I relapse every now and then. Today I felt really shaky. I assume it must have been the chocolate truffles I had for breakfast because the turkey sandwich with fudge pop afterward was just fine for lunch. I do feel better after dinner. I think I am suffering from Cavewomen syndrome. You know when someone spends too much time inside. I just don’t want to do anything and then when I get the urge I do too much. You all think I do a lot well I sure have you fooled. My sinuses are draining but that’s it just the yucky slime in my throat. Ok that was a little graphic sorry. I feel really horrible. I haven't given Amber a bath yet (she played in the mud today) that means her pet visit at Elms Haven is off this week. Who knows what tomorrow will hold maybe I will give her a bath and take her in the afternoon. Or maybe not. We will see.

Praise GOD I did get to see Eli's beautiful blues for a couple of hours today. I took full advantage of it. No! We didn’t dance. We did go and lay on a blanket in the shade of the tree as the warm sun set a nice glow all around. It was wonderful. We got out there just in time for the Kids walking home from school. The screaming and chatter they do really peaks Eli’s interest. I wish I could sleep out in the sun. Not me I am way to fair completed then there is my angel Eli that has never had a sunburn. We stayed outside until Daddy came home. I hope to something like it tomorrow. Maybe the Cavewomen thing can be helped out by a little sunshine.

Eli is still really sleepy. I am taking the opportunity to back off of the Valporic Acid. We tried once and had a huge increase in seizures. Now since he is sleepy anyway my hope is that he won’t notice. Yeah I know silly. I will take the chance. He has to come off it sometime. His seizures are changing again. The intensity is not as bad yet I don’t think that means he isn’t having them I just think we don’t notice all that he is having. Sometimes he eyes will just bounce for a while then he will be ok. Other time his face twitches. I could name a lot of different things that I have been watching that I consider a seizure but I won’t. You know the have those T-Shirt that say Mean people suck, I need one that says Seizures suck. For those of you that don’t like that word sorry. Anyway Chris came on Thursday and said that Eli’s Vitals are all really good from Heart rate to his O2 level. I think and hope he is one of those kids that keeps his stats on target up until the moment Jesus scoops him up. I just don’t know what to think. All roads lead to heaven for my son. I hate the fact that we don’t get a map I want to review. He could just be exhausted from the trip. Maybe not! I guess I will get up tomorrow, the day after that and so on. That is what I choose. I do know that I have to focus on some stuff or I won’t have any hair left. I have always been a little scatterbrained but this week I feel like scrambled Eggs. I do know that Eli will let me know what is going on. I may not like it but that is my problem not his. He is perfect….

Last thing before I check on Bear and hit my bed…
Today I did some focusing work on Eli’s Angels. I do need some help so if your child “is not a member” Email me for details. Or if you have any ideas I am always looking for some. There is so much on Eli’s Angels to tell all of you but I just haven’t. Mostly because we were gone for a week and I swear it will take me three to get caught up. What I do know is that we are 44 members and strong. Sadly I think about Heather everyday. I pray for her family and pray the have peace in their hearts. Heather I know you are on the playground in Heaven.

If you didn’t get any of the above. Eli is much the same maybe a little more awake just a little. His body is telling us nothing is wrong. I know better I am his mother. It is a waiting game. I feel like I am standing in a very long line.

God Bless and I pray you all have a wonderful weekend.
Ann

Tuesday, September 27, 2005 3:13 AM CDT

Alright hear goes. Since the last update Eli has still be gunky and sleepy. I keep waiting for him to snap out of it. Deep down my heart keeps telling me that he might not. This whole brain thing kind of sucks. We just don’t know what is coming next. However one beautiful thought is that Eli is very comfortable when he sleeps his 22 hours a day. The other two are spent coughing and pooping. YAH! He pooped 3 times today. Wow, that is awesome for him.

Today Eli and I snuggled for a few hours. I got up did the morning meds routine. My little guy was so comfortable I left him in our bed all snuggled in. Chris (hospice nurse) came in and had to do the check up in our room. We discussed all that had been going on and she looked him over very thorough. All of his vitals were his normal stats. O2 level was good! I had to laugh. I just don’t know and I really won’t begin to understand. I resort back to a book that every child in Eli’s Angels is given when we sign them up “I’m thankful each day”. I hate it when he is soooooooo sleepy. Everything I do seems like it doesn’t matter. We don’t get a chance to do the FEW things we can do during the day. I feel worthless. I really don’t know what to do with myself. I could clean or do something productive BUT WHY? When I can hold or just look at my Angel. I do wish for so much yet still thankful for what I have. Oh yah back on topic. Chris ordered Eli some topical cream to help him with some yeast. It is the strangest thing the yeast…. She also talked to Dr Craig about getting a Nebulizer they feel that maybe that might help Elijah breathe a little better. There could be any number of reasons my little man is sleeping so much. Just please pray that it is not permeate. I miss putting him on the floor and playing hip hop so we can do DANCING. You know where mommy takes is arms and legs and pretends Eli is doing it. Ok well I think it is fun. Eli just opens his eyes and I get to watch his face light up. I want to do that again.

We are also working on getting lots of stuff for positioning. Eli has had a curve in his spine. After some concern to keep it from getting worse we(Chris, Cindy, Julie, Amy and myself) have been working on outfitting Elijah with a few things. I know Eli is on the extremes for handicaps yet the only special needs equipment we have are, His wheelchair, Car seat, Bath chair and the lift. He just got his new Wheelchair and the bath chair is getting too small. So it is time to upgrade and get my little man in some comfortable positions. This is work. There are many things out there for special needs kids. It is all about matching what will work best with Eli and for him. Pray the things he needs are brought to him in a timely fashion.

Last thing. We get to see the Broncos play a couple of games a year. This year we haven’t been so lucky. We had to give away our first two games. Finding a Elijahsitter is a difficult task. God blessed us tonight. You see I am afraid to ask anyone to watch Eli anymore. His is so heavy that many people are afraid they might hurt him. I am afraid that they might both be hurt, the sitter and Eli. I tried my luck last Friday when Ginny was here. She called me the next day and said that Grandma 3 and grandma 4 would both be coming to watch Eli on Monday night. Wow what a blessing. Ginny and JO seem to always take care of us. Anyway, Chad and I went to the Broncos beating on the Kansas City Chiefs. Well I guess KC did score a few points. We were in total shock. I really thought the KC looked like they were going to hand the Broncos a loss. We got home really late do to some very heavy traffic on I-25. Both of them had worried looks on their faces. They had Eli on the changing table doing some suction. I felt bad that he did not sleep for them the whole time. I guess he had been coughing for a while and they were doing their best to clear him. I picked him up to rock and do some CPT and will he pooped a big one. What a way to say good bye to some wonderful ladies. Thank you Ginny and Jo It was nice to get away. That is something very rare around here. Eli is sleeping well now 2am after much coughing and sneezing. I will check on him one last time then put myself to bed. Tomorrow is going to be another busy day. I get to learn to do yet another medical treatment when the nebulizer comes. I don’t even remember what else, oh yah Amy his PT is coming. She will love doing PT on a sleeping floppy baby. It is like moving heavy pillows around there just isn’t any resistance.

By the way I think I wore out the phrase I DON’T KNOW today. I said it over a hundred times easy

Love Ann

Saturday, September 24, 2005 1pm

I am so sorry for this lame update. I am half asleep and not functioning very well. Yes I know it is afternoon and I haven’t even showered. To tell you the true I don’t plan to either. I think later I will fill the big tub and have a nice bath with Eli. He really likes to float. Ok now for why I am so exhausted. Yesterday was a strange day. Eli had me very very worried. Then he seemed fine and then I would worry again. You see he didn’t wake up all day but for maybe a total of 1hour all day. Now I know he sleeps a lot but this was too much. I couldn’t take it. I picked at him to stimulate some kind of activity and nothing. I had to leave him for a couple of hours and before I left he seems great. Then when I got home it was back to deep sleep. It wasn’t like a nap thing; it was DEEP nighttime sleep all day. I tried different positions. I tried pestering him to the point where he just got mad at me. Then I threw up my arms and decided maybe he is just tired. About 10pm I found out why. He had a really long bad seizure and then tried to cough. He had been able to cough so I didn’t understand why he was struggling so badly. What to do? It is so hard to know the answer. I gave him CPT for a few and there was my answer a yellow and thick like playdoh. Yep! He spent the entire day building snot in his chest and it was too thick for him to get out. I immediately started to suction. Wow! Did that open up a can of SNOT. It was so thick that every time he coughed he gagged dry heaves. I cried he was hurting so bad and tears were rolling out the corners of his eyes. I just kept suctioning. I increased his nighttime pump intake and added water, in hopes to thin it out. I suctioned every time he gagged all night long which was about every 15min throughout the night. One note is that we watch the whole ordeal with the RITA storm. I finally laid down on the floor in Eli’s room about 3:30am. I still had to get up and do the suctioning but I was getting too weak. It has been a long time since Eli has had such a bad night. I was sooooooooooo thankful when I heard Chad’s voice in the morning. I changed Eli, took him off the pump and asked if he could take over. Thank God! I went to bed and got a couple of hours of sleep.

Today Eli is still very sleepy which I can understand now. He was up all night. He is still very gunky. I don’t want to try the Robenall(sp) that is what started this whole mess. The extra fluid I gave him last night helped a great deal. He is at least able to cough it up. He looks like a rabid dog. He just keeps foaming at the mouth. I am just about to do another CPT session to break up any remaining thick stuff. On top of all Eli’s snot I just keep feeling my drain too. Please just pray for Eli to get some clear time. I am humbled by what we are going through yet remain so very thankful that he has done so well lately. Wow! He really has. Like I say at the top of the page we are on borrowed time. I don’t forget it for a second. I use all my energy not to cry when I look into his sleeping face. It just reminds me that that is how I will see him before he goes to heaven. His beautiful blues always pierce my heart with such JOY…..

God Bless
Ann

Monday, September 19, 2005 8:07 PM CDT

For the journal of our trip I just wanted to do sort of a photo diary. Enjoy….If you have any questions about the trip just ask in the guestbook and I will answer next update. We did so much it is just hard to tell everything without sitting in the office for weeks. I wanted to say thank you for all of those that bought Elijah his special wet suit for our vacation. Now when his hits the water he will do it in style and it will keep him warm. It was a wonderful gift that he will enjoy for time to come.

As for Eli’s health. He is still coughing like crazy. This is usally after he wakes. Then it starts. He gets tired so quickly it is hard to watch him struggle so. However I now think that all the gunk is not caused by a allergy or Cold. I think much is do to some Molar problems. His left check gets hot without him having a fever and he will bite anything that goes in him mouth. So that is what I do. I spent the day putting pink tootheets in and letting him chew until it got bad then put in another. Teething sucks. There just isn’t much topical stuff we can do to help him. The saliva thing just is so hard to manage.

Saturday- Left 6am landed in Florida. Hot Hot Hot. We sweet so bad we were dripping right of f the plane. We headed over to Give Kids The World. Later after pizza Chad and Eli headed up to Mayor Clayton’s Birthday party. Eli even got a football painted on his cheek. Mommy had to go to orientation. Tired oh we were so tired. The 2hour time change really kicked our behinds.

Sunday-Still trying to adapt to the time change we decided it would be best to stay around the resort. The dilemma was that the Broncos were playing Miami; we needed to find a place to watch. Mommy asked around and found a place very close by. Ok so many of you may find this offending. I have to say it was MY idea. Chad didn’t even know where we were going until we got there.We went to Hooters, Anyway the Broncos played a horrible game and lost. Booooooo…..Then we spent the afternoon in the pool at the resort. It was perfect. Eli relaxed and loved it.

Monday-Off to Animal Kingdom to enjoy the safari ride and will whatever else we could find. We didn’t do much yet it was a good experience. The lion king show was really cool. At that point Eli was done and he had a couple of yuckies. He seemed to really like the Safari ride. He was awake the whole day.

Tuesday-Eli started to cough a lot. We didn’t quite know what to do. We waited for him to clear most of the day and finally decided maybe it would be a good day to go to the beach. We picked one that was only and hour or so away and took him to the ocean. YES! His first trip to the ocean. We found out he is not too fond of the Ocean. He didn’t seem to like it much. He grunted at dad and held on real tight.

Wednesday-Our last full day. Eli was up all night coughing which means mommy was too. Chad and I were not to keen on leaving the Villa yet we knew it was now or never. We decided to hit Sea World. We were so glad we did. The time spent there was priceless. He got to play with the stingrays and the trainers were so great. They helped us get a Dolphin close to the wall where Eli could pet it. Wow!!!! We have a great video and lots of photos. Oh I almost forgot. We took Eli to the Pirates Dinner show. He might have liked it if he wasn’t so tired. That is ok. It worked out. He slept through it and we ate. No problem

Thursday-Yuck we had to pack. Boy was that fun, Chad and I sitting on Suitcases trying to close them. Then we took and hour or two and enjoyed the pool GKTW was nice enough to let us shower and clean up before we checked out. I felt a little guilty for staying. If you ever get a chance to go to Florida check out GKTW volunteer or donate. They really make a difference.

Thank you MAKE A WISH COLORADO and GIVE KIDS THE WORLD….
This was a trip for our family to be with Elijah and we created some unforgettable memories. God Bless you, your sponsors and all of the volunteers that make these trips possible.

Friday, September 16, 2005 9:55 PM CDT

We are Back from Florida! All went pretty well. I am working on getting some time to do an update as well as getting photos posted for you all to see.

Eli and I are both really stuffed up. Going from dry to humid and back again really got to us. He is caughing so much. At least he can. Me well, My head is full of snot and it hurts really bad. Pray the gunkies clear soon.

Hope to get will you all reall soon. I do have some sad news to share. One of Eli's Angels has earned their wings.

Please send many prayers to heathers family. She is now with Jesus.
HEATHER
09-25-2002 - 09-16-2005
Bring her peace in heaven…

Stroll Along For Children

A family fun walk & celebration to Kick-off the Babies Can’t Wait CampaignJoin in on Saturday September, 17 2005 at E.B. Rains, Jr. Memorial (Webster Lake) Park Northglenn sensory park. This is a FUN DAY for children and families that includes a stroll around the lake and a variety of activities for children. Activities include Face Painting, Games, A special guest (the Chick-Fil-A Cow) and much more!

There is NO REGISTRATION FEE to participate in the walk which will be a couple laps around Webster Lake.

Schedule 10am-11am Walk
12 noon picnic lunch that will be provided!

For More information contact:
North Metro Community Services
1185 W. 124th Avenue Westminster, Co 80234
303-252-7199
or
Early Childhood Connections
2727 W. 92nd Avenue Federal Heights, Co 80260
303-450-0852

Proceeds (Join the Friends of Early Beginnings Group) go to Adams County children, birth to three with developmental delays and or disabilities. The funds will be used to provide services to children in the Early Beginnings Program. Eli and kids like Elijah are a part of this program that helps them in so many ways. Without the help of North Metro Community services Eli’s lift would not have been possible. Their large donation finalized all that needed to be collected. Cindy the greatest massage-OT in the world came to us through this program. I hate to think where Elijah would be without her.

THANK YOU NORTH METRO COMMUNITY SERVICES FOR ALL THAT YOU DO.

Tuesday, September 6, 2005 10:42 AM CDT

***PRAYERS NEEDED*** for HEATHER This is from Heathers CB page dated today written by her mother. "Heather's lung function had been slowly becoming less stable over the weekend and suddenly got much worse this afternoon. They were no longer able to keep her oxygen levels up on the regular ventilator and had to change her to a high frequency oscillating ventilator, which gives hundreds of shallow breaths per minute. She is receiving medicine to paralyze and sedate her. She still has signs of a serious infection somewhere in her body but they can't locate the source. She's on heavy-duty antibiotics so it's probably being treated." www2.caringbridge.org/ma/heather

Eli's Journal 9-6-2005
Grandmom and papa left yesterday morning. Chad and I slowly got the office and computer mess put back together. G-mom needed Chad to do some upkeep on her computers. She lugged them out from Omaha. I won’t go into details it wasn’t pretty.

Eli still had a few bad yuckies. I knew he needed to poop and took a chance maybe his discomfort was causing a few. All I can say is after a suppository and “pushing poop” The little guy felt a lot better. He took a really good nap and seemed MUCH more comfortable. Oddly! No seizures after that for the whole day that is that I know of. He had some really good awake time also.

Today should be interesting. I have soooooooooooo much to do. I do have to apologize to all our CB Angels. I visited many pages today and prayed for each of you yet I didn’t sign each of your pages. Know that we are thinking of you.

Eli’s New Chair

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Julie and Eli After she got him hooked up.

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Eli outside for the first time in his new chair

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Eli’s Angels notes:

Those of you that have wanted to donate to Eli’s Angels and don’t know what to give I have a couple inexpensive ideas. The Family Christian stores are having a really nice sale on Children’s things. September 10-17! DVDs CDs BIBLEs Books all for $5.00 each. Limit 5 per customer. There is a whole page of really nice stuff. The God of Wonders CD is one of the best ones Eli has. Matter of fact he listens to it each night before he goes to bed. We love it. There is also a Hermie the Caterpillar DVD. Hermie is one of Max Lucado’s creations. There are many other items, if you have a family Christian store nearby check it out.

Familychristian.com

God Bless

Sunday, September 4, 2005 5:35 PM CDT

I have a few moments to spare Eli is down stairs snuggling with G-mom. It has been a pretty busy day. It is nice when we have visitors because I am more likely to go to church. G-mom, Papa and I all went. Daddy stayed home with little bear. We ran a few errands had lunch then it was working time. G-mom cleaned inside and I mowed the lawn. Papa and Daddy were working on some tables. I still have to ponder what is for dinner. I think I am looking a pizza delivery. It Saves G-mom and me from doing anything stressful such as cooking. I think they are leaving tomorrow, maybe tonight, who knows.

Eli is still having a few really hard seizures a day. Still the number is staying very low but the intensity of each one is still very strong. I am hoping that to will decrease.

I wanted to say thank you for all of those that bought Elijah his special wet suit for our vacation. Now when his hits the water he will do it in style and it will keep him warm.

The local news was broadcasting that Denver would be receiving our first plane of evacuees from New Orleans. My heart really goes out to these people they have nothing left and now they are being shipping all over the country. At least by coming all the way to Colorado they will be living in the old dorms on Lowery air force base. I don’t know if they empty at the time or they made them empty to accept all that they could. I pray the transition goes well for all of those that are now many states away from where they once called home.

I have been meaning to tell you all about this for a few months but with each update I am slave to my forgetful mind. You know it is getting so bad now. I have forgotten appointments and well forget to write things down and frankly it is not like me. Anyway a while back when I checked the mail there was a package a little brown envelope and inside was a sweet little crocheted Angel. It was really neat. Then a day later another and two more until Eli had received so many we filled a string and hung them on his bed. Among the Angel mailings were beautiful butterflies which arrived at our house the same way. He sleeps we a string of angels every night at the foot of his bed. I may have mentioned this before, I wanted to again. It was really special of those ladies from all over the country to do that for my Eli. Please visit their site: Angels for hope

Saturday, September 3, 2005 12:26 AM CDT

Again I am so much to say but no time to say it.

Eli’s seizures seem to have calmed down yet again. We will not do any more changes until we get back from Florida. Then we will try again. Grandmom(Chad’s mom and dad) and Papa are here for the weekend. Chad is doing some fix it stuff with their computers there are computers everywhere. I think at some point I will lose mine for a brief time.

My friend Ann in MS did contact me and they are alright.

This week will be really busy getting ready for the big trip. Eli gets his hair cut today. Me I don’t know what to do with my mop.

God Bless and I will try a better update soon.

Wednesday, August 31, 2005 11:46 AM CDT

I am sorry this update is really short. I am people worn out. My door has been revolving for the last few days. People in and people out. NOTHING BAD. I am just tired. We have had some really cool things happen yet I don’t have the energy to share.

Elijah did well when we added on the Keppra. When it came time to lower the Depacote (valporic acid) it didn’t go so well. For three days he had some nasty seizures. After a talk with his nero we bounced it back up and won’t take it down again until we get back. Other than that the kid has been doing great.

Big news: This is much bigger than it sounds Eli got his new chair yesterday. Julie came and Wow IT is so cool. We even got a reaction from Eli first he loves the arm rests and second he made a big poop. Lucky that mommy had just taken him out of his new seat. It is just sooooooooo Cool.

I have so much more to say but after all that I did yesterday I feel as though I was hit by a truck while was sleeping . Not sick just worn.

One more note. Pray for those that Katrina hit. I know a few people including Ann E from the Heartbeats for mito site. I am hoping to hear something from her soon. I pray for her daily.

Eli’s Angels notes:

Those of you that have wanted to donate to Eli’s Angels and don’t know what to give I have a couple inexpensive ideas. The Family Christian stores are having a really nice sale on Children’s things. September 10-17! DVDs CDs BIBLEs Books all for $5.00 each. Limit 5 per customer. There is a whole page of really nice stuff. The God of Wonders CD is one of the best ones Eli has. Matter of fact he listens to it each night before he goes to bed. We love it. There is also a Hermie the Caterpillar DVD. Hermie is one of Max Lucado’s creations. There are many other items, if you have a family Christian store nearby check it out.

Familychristian.com

God Bless

Saturday, August 27, 2005 4:44 PM CDT

Hello Happy Saturday everyone.

Lots of news on the horizon. Eli was granted a wish by Make a Wish Colorado! We are taking him to Florida to “Give Kids the World” in September. It all happened so fast. Those Make a Wish people really have it all under control. We are hoping it is a nice get away. Eli does have many physical as well as mental disabilities yet we feel there will still be much he can enjoy. Defiantly going to take him to Sea World, I know they have a pool of reef fish that he can touch such as starfish. We were debating a dip in the ocean. All we have in CO is mountains and he hates cold. Who knows what we will do or where we will go. From what we have heard the Give Kids the World resort is fun enough. That sounds like a real treat. Anyway we are praying all goes well. Let’s not forget NO HURICANES except the football ones. Oh and don’t you worry we already bought a 1GB card for my digital camera. It is the only thing we prepared thus far.

Little man has just about made the whole medicine adjustment. We are starting to lower and remove the Depacote or as we know it Valporic Acid. He sleeps a lot and then is awake for a few hours. It is really hard for me to adjust to the changes. I usually keep it quite for him when he sleeps and plan activities around his awake time. The change as made that nearly impossible. Theses day’s things are spontaneous. We didn’t plan until late, Chad and I were going to go to the broncos game. It didn’t work out so our friends Christine and Jeff will take our place. I hope they have a good time. GO BRONCOS. We will be watching from home all dressed in our gear. Eli in his #47 jersey… John Lynch. Daddy in the #16…Jake Plummer… Me in my Pink shirt and Pink hat. Who knows maybe it worked out for the best. It is clouding up outside and we may get rain. You just never know.

If you have talked to me and I have been a brat lately. I deeply apologize! I have control issues. Especially when I am in a world wind and loosing power. My front door seems as though it has been open for the last month. Not a day has gone by that I can take a breath. Please don’t get me wrong I love my visitors it is just hard for me to make an attitude change and I come from a long line of Foot in the Mouth genes OR as some would say speakers before we thinkers. I love you all and forgive my bratiness. I am a brat at heart. I even told the poor woman that is brining Eli’s wheelchair next week when she called to confirm” It is a good thing because I was going to have to break your legs if this was a cancellation call.” I laughed but I don’t think she found it as funny. Boy I am just mean? Still if it doesn’t come please don’t call. I will be out of character and you will not want to talk to me.

YES! Eli’s wheelchair is coming on Tuesday. I will let you all know if it all works out. Wow! I am so excited. I won’t be afraid to take him for walks anymore. He will be sitting up like a big boy again. YES! Too cool.

Elijah has changed his breathing pattern. His color is good and his stats haven’t changed, I know though. I know him well enough to know it is a little different. I think it is do to the med change. He is also back to wanting anything to chew on. This is always a hard problem. Once you give him something substantial, his saliva chokes him. Constant battle.

In the next week we will be getting the Eli’s Angels packages out and packing for our trip. Praise God for all the is going on. Sometimes it is overwhelming but always makes life interesting.

God Bless

Monday, August 22, 2005 10:34 AM CDT

First I will take care of the scooter mishap. I was pulling our truck out of the garage and into the street for loading of the kids and well I didn’t know there were 3 scooters laying flat in my grass. So I made sure I hit all three.

Ok On to the update. Eli seems to be doing much the same. Gunky and only a few seizures a day. All in all not too bad. It is the best I could ask for. Since we are in the midst of raising one of his new seizure meds he gets used to the dose and then up it goes. Today it another up day but I can say we have enjoyed having him more alert the last couple of days. This increase should be the last for awhile. Then we start to decrease the other med in hope to take him off. I tell you all it is really a challenge to get all the meds RIGHT at each meal during dosing changes. I do it so often it is like tying my shoes then a change comes along and I get all messed up. I always pray I get everything right. Strange, that when I feed my child there is always a fear of taking the wrong bottle and causing a major problem. The average mother out there only has to worry about cooking hotdogs and mac and cheese. Yes! I do realize it is harder than that I was just throwing the life or death issue out there. I waited a few days before I did his last med increase because this past weekend we had even more visitors. Grandma(My mom) and Papa(Stepdad) came for the weekend.

Hmmmmmm! What else? Make a wish came and met with us. We are thinking of taking Eli on what would be our first (only) family vacation. The only place he has been is back to Omaha to see family. It would be a real treat. It is something amazing like this. We don’t think about vacation cause of Eli’s Medical needs. After learning what they had to say and then knowing what our CB friends do, I think it would be a little better to go through Make a Wish then do it on our own. At least then the medical needs and extra stuff like that would be taken care of. There is no way we could do it on our own. Anyway we don’t even know if it is possible. It is just something that might be.

We are all doing Ok we do need a few days rest after having so many visitors but we will manage. Eli gets his massage today and his visit from Chris other than that time will tell.

God Bless

Monday, August 22, 2005 10:34 AM CDT

Wednesday, August 17, 2005 12:37 AM CDT

Friday night well it was Saturday morning. I got a surprise well 5 of them. My sister(Jenny), her hubby(Brian) and their three girls(Jocelyn, Lauren & Delaney) drove into town for a visit. Oh yah their two hot dogs Sammi and Cera. Oh Boy a house full! What a long week for them. They live in Duluth MN and drove to Table Rock Lake for a week of boating with Grandma and Papa then thought they would drive another 8 or so hours to see us. I cannot even imagine taking that long of a trip with little ones. Anyway, It was a fun visit. I love seeing my sister and doing little girls hair. I am recovering from all the playing we did. Wow having able children is so much work. For those of you that have a few don’t feel bad for me you have your hands full. I slept really well every night. No lying in bed watching animal planet till 1am. I was out when I crawled into bed. I won’t explain all that we did or didn’t do I will leave you with some really cute photos at the bottom.

As far as Eli’s health. He seems to be doing alright. He has had some trouble sleeping through the night. Poor guy. He just can’t communicate to tell me what is bothering him. Cindy told me on Monday during his massage that his left ear felt a little full (or something like that) That does explain why he has been up at night. Maybe his little ear hurts. He doesn’t seem to be in discomfort. This would be the first one I HAVE missed. Usally I can tell. This time I couldn’t. We are hoping that he just got a little water in his ear. You know kind of like swimmers ear. Chris is going to check it really well Tomorrow (Thurs) and hope it is clear otherwise he will have to go into DR Craig. His seizures have been decreasing slowly. That is except for yesterday where he had a few really bad ones. Last Thurs he had another increase in meds so when the girls showed up and the noise in our house jumped he didn’t seem bothered. Normally long durations of noise really get to him. The gunky stuff is still flowing thick. The suctions machines are still working overtime. It could be related to the ear problem. Again who knows? I do my best to guess and listen to what the signs tell me.

Me well I am doing a little better. I forgot my meds the last couple of days and that throws me off. Yesterday I could really tell. I took them ASAP then took a 45min nap with Eli. I am coming around. Today Chad works from home and I have a few things to do but not too much. I made another boo boo with the garage. That makes I think three different cars in 8 years. We have a small garage and yet we get a car, truck and a motorcycle in it. Yes! This requires talent to park. I am missing that. I was doing so well for so many years then Whops. I was backing the car in, avoiding the motorcycle and slid the back passenger door along the opening to the garage. I dented it pretty bad. My mind was in another place and well it happened. Chad told me today that he took a look and it is really bad. At least this time Chad doesn’t have to fix the garage door like he had too many years ago when I claimed the ICE made me do it.

I will get back to normal and make the visits to our CB friends Just remember we love you and think about each one of you daily.

Eli’s Angels needs your help getting a few books. If you are out and about and you think of us. Pick up a gift card to a bookstore or one of these books.

The Tiny Snowflake- Arthur Ginoifi
Birthday Monsters-Sandra Boynton
What about Heaven-Bostrom/Kucharik
You are special, little one- Tafuri
The legend of the THREE TREES- Boardbook adapted by Catherine McCafferty
If I only had a Green Nose-Max Lucado
The Crippled Lamb- Max Lucado
A very special Critter-Gina and Mercer Mayer
Everyday Angels-Moulton/ Winget
The Giant Surprise a Narnia Story-Hiawyn Oram/Tudor Humphries

Boardbook-Hardcover-softcover Whatever you can find or spend. We are just thankful.

Ann

Wednesday, August 10, 2005

It hasn’t been a week yet. Yeah for me getting to an update. Eli has had a fairly good week. After he got the poop out Friday it was like a whole new Eli. As good as it gets I guess. He seemed to be a little more alert and not as sleepy. I was really wondering if it was the medicine changes or the poop. I think it was a little of both.

Now he is having a few seizures a day. They are the screaming, laughing, smiling, kind. I really hate those and then he is having a few stare ones. All in all not too bad. The biggest problem the last few days has been gunk. He seems to be coughing. Of course his cough is not strong enough to get anything up but at least he tries. Both suction machines have been working round the clock and I really hate to do it that often. I am left with no choice he coughs until he turns himself red or starts holding his breath. There are a few things that could have contributed to all of his gunkiness. #1 starting with our neighbors. They haven’t mowed their backyard in years and they decided to do it on Saturday. We had plans to be in our backyard for some swim time. I went out and took one look at our pool and it was covered in dry weed clippings, the whole yard was. It wasn’t just a little it was piles everywhere. We cleaned the pool out as much as we can, covered he button and got to swim for a little while. #2 His gums have been trying to come over his molars again. I keep bushing his teeth and do my best at mouth care but I know it hurts and causes extra saliva. #3 finally we have gotten some reasonable rain around here. Not a monsoon or a drip but a nice slow steady rain. Perfect. I really don’t care what is causing the gunk I just want it to be less. I consider it unreasonable if I ask for it to disappear so I just ask for the problem to shrink. Last night I was a little afraid to put him to bed. I tried to calm myself and put him in Gods hands like I do. Some nights it is a little harder than others. This morning I went in to find my little man glad to hear mommy. His little spit blanket wasn’t as wet as I thought it would be which means the night wasn’t so bad. After a quick diaper change it was off for a snuggle with mommy. Daddy was very busy on calls and blowing up his computer. Yuck. It is now in pieces all over our office. Who knows maybe he will be able to get everything loaded back on it. He wasn’t very pleased to say the least.

Amber has been driving me crazy. Saturday was our trip to the care center. As usual Amber did great. She met some really neat people and even made a few smile. I am enjoying this so much. I know she is and that is what is driving me nuts. She thinks now that we go for visits it should be every week or day for all that matters. I don’t have that kind of time so she follows me around and it always under my feet. It is hard for me to tell anymore if she wants to go outside or follow me. I take her out and she stands right by me. I walk in a circle and she follows. I think she is afraid that I am going to forget she is there. IT is Like “ME AND MY SHADOW“. She is a good dog so I won’t complain too much. She keeps me company even when I ignore her. Let’s not forget she does get the paper every morning.

We don’t have anything major planned anytime soon so no upcoming events. August is another month filled with birthdays and reminders of those that have passed. The first week in August will always be the week Eli was diagnosed and our world became what it is today. When you put all the dates together it is really strange. I have mentioned before that I had a little brother Jason that died when he was 4. No known cause just lots of contributing factors. We will never be able to say it was what Elijah has; I just say I believe it is the same. Those of you that know these Mito diseases understand the not knowing thing. Jason was born in August ironically Eli was diagnosed on the Day of Jason’s birthday. So many memories.

I also have to apologize to all our little CB buddies that I have not signed in. Sometimes it is just because I want to make sure that everyone it doing well and then there are the times I don’t know what to say. Mostly it is a time thing. I just haven’t the time lately. Summer….You are all in my prayers.

I must go now. I didn’t sleep very well last night and I think Eli is out for the count. Sorry about all the typos. Don't have the energy to fix them.

Friday, August 5, 2005 2:58 PM CDT

It was a day that didn’t start off too well yet it is turning out to be a great day. I woke up to Eli screaming at 5am. Yes! This means a seizure. Then I suctioned him until 5:45 and tried to go back to sleep. Nope! Time to get up it is training camp day. Chad and I got all ready loaded the truck and took Eli strait from bed to the truck. He had another really bad yucky then relaxed for the drive down to dove valley (the broncos headquarters). The weather was cool and very beautiful. A little too chili for Eli, a little blanket that grandma made fixed that.

Still pray for Poop. None yet!!!!

Friday night - Thanks for the prayers!With the enema help we got a good one tonight. Now little bear is all relaxed and maybe he will get some better sleep tonight.

Thursday, August 4, 2005 5:18 PM CDT

Please everyone Pray for POOP! Elijah is going on 7days. We need poop today or Else….

Alright here goes. Wednesday was a very busy day. We got up and headed to children’s for some routine blood work. Elijah did very well. Got home and watched the rain wow the rain. If flooded streets and almost knocked over our new little trees. Good thing we just tied them down. Daddy did some errands while I worked hard resting with Eli. Ok Napping. I did however manage to do 6 loads of laundry. Washed dried and folded. I have yet to put them All away. It was also the day for Christina from church to bring dinner by. She GOT ME! Christina did something I never in my life expected. She reads this sight and saw how on Friday I was doing a bit of complaining about having to eat BBQ Chicken and wanting SEAFOOD. Last night she showed up at my house made my table all up complete with candles. Then asked if I remembered what I wanted. I started to cry. She got Red Lobster to donated two very wonderful meals for Chad and I. We had the works. Lobster, Crab, Fish, Rolls, Scallops, shrimp and a few other things. Wow! I still can’t believe that women. My heart was truly moved. I told her that she had surprised me and anymore that is kind of hard to do. All I am left with is WOW! Thank you Christina and Red Lobster.

The Car: Ok. We got it home after replacing the battery only Chad noticed that a light was still on. Stopping at the Auto store he found out that it could still be the alternator too. He pulled that hard to reach thing out of the car and took it up to be tested. Yep! it was bad too. Now I know our cars are both 97” but did they both have to have new alternators in the same year too. He got the new one in last night and left for work this morning so we will find out how it runs when Chad gets home in a couple of hours. Cars are such money pits. I guess if we were gamblers we would call them slot machines. You put money in and you can keep playing for a while longer.

Eli’s Haircut photo must have been missed. I have had a few E-mails and requests in the guestbook. I can’t take a new shot as his hair is already growing out. I have two to post. One is him in his swing. The other I didn’t want to post because he is having a seizure and has a big smile. Still it is a really good shot of his hair. Both posted below.

The big news is Broncos Training camp: This week has been so busy that the only day we can take the little man is tomorrow- FRIDAY. He has his new jersey, socks and little football. He is all go.

Eli’s Angels needs your help getting a few books. If you are out and about and you think of us. Pick up a gift card to a bookstore or one of these books.

The Tiny Snowflake- Arthur Ginoifi
Birthday Monsters-Sandra Boynton
What about Heaven-Bostrom/Kucharik
You are special, little one- Tafuri
The legend of the THREE TREES- Boardbook adapted by Catherine McCafferty
If I only had a Green Nose-Max Lucado
The Crippled Lamb- Max Lucado
A very special Critter-Gina and Mercer Mayer
Everyday Angels-Moulton/ Winget
The Giant Surprise a Narnia Story-Hiawyn Oram/Tudor Humphries

Monday, August 1, 2005 3:25 PM CDT

Saturday Swimming was so much fun. Eli protested at first and his first dip didn’t last too long. After some warm lawnchair time. Mommy couldn’t take the heat and got in the pool. At this time I thought Eli might like it better since the water had warmed a bit. Yep. I didn’t feel like putting his swimming suit back on so he swam in all his glory. I loved the time we had together in the pool. It was wonderful. We played for nearly and hour. My arms were so tired from holding his head and my self up. All the soreness was well worth it. I laid him on my chest face up and crab crawled around the pool. Yes a workout but he was real sensitive to where I was, more so then normal. He did not want to let go or be any distance from mommy. I had to hold him real close. That’s ok I like it.

Sunday nothing big Eli did get to see grandmom and papa via Webcam.

Monday. Wow have crazy it has been already. Chad was all dressed up for work and left on time. He called me a soon after he left for work. I ignored it the first time as Eli and I had just got all snuggled up. It is too much work to through away for the phone. I figure it this way. If it is important they will call back and a couple of seconds later he did. “COME GET ME” A Oh. He drives our car so I have the truck for Eli’s things. It seems not far from home the battery died. He was able to coast around the corner so it wasn’t in traffic. Luckily it wasn’t that far. The biggest problem is that I had Eli. I didn’t even bother to dress him. I loaded him and the tools and off to save Daddy. We got there tried to jump start the car, Nope! No such luck. That car is stubborn. We were praying it was only battery problems. At least that is the cheapest to fix. Chad got the old battery out, threw it in the truck and I drove him to work. Needless to say he was late. I got home, fed Eli and hung out for Chris to check him out. Vitals are the same just a little more gunky. No Cindy today she is on vacation and a little business too. I was hoping our neighbor would have a hour that she could hang out with bear. Yep! Carrie and her daughter Morgan came to save the day. They watched Eli while I got a new battery. Yeah!!!!! I have the battery and when I pick daddy up from work we have to go get the car and pray that it works.

Busy week already…. We have to pick a day for training camp and then make a stop at children’s for some routine blood work. Oh and let’s not forget we still have to go to the stadium to get Eli’s new Jersey we haven’t even done that. Man O Man.

Love ya

Ann

Friday, July 29, 2005 5:43 PM CDT

Alright 8am was tooooooooo early for Eli and mommy. Then to top it off mommy couldn’t get to sleep for anything last night. Wow! I was so tired. So was the little man. Eli was really mad when I washed the tush dressed him then put him in his CARSEAT. He looked at me and gave me an awful look. He thought it was morning snuggle time. He was right but not today. I am sure that Chad had a good laugh at me complaining about getting up so early. The 8am wouldn’t have been too bad if traffic on the highways was better. Really it wasn’t too bad today. We got there on time. The visit went well. Everyone was in Ahhh of Eli’s 52 lbs Yes it is official he is now 52 lbs of loveable boy. His docs just stared at him for a few minutes. I guess to those that don’t see him everyday his is a tug boat. Well maybe a tanker. We are going to play with Eli’s meds introduce a new one and pull one of the old ones. That should be fun. They also wanted to get a CT scan and since Chad and I aren’t so great at making multiple trips we were off to see if it could be done today. YEP! We were even able to get the CD copy right then and there. Wow the hospital was full of great service today. Only a couple of hours to get it all done.

Many of you may want to know about the whole CT scan MRI thing. It is a question that many parents ask me. Why Elijah doesn’t have more scans or MRI’s? Well we don’t see a need. Nor do his docs. That is the best answer I can give. It has been almost two years since his CT scan and MRI. This is the first one done since. We feel that all of his doctors have Eli’s quality of life in mind when they make their decisions. An MRI takes sudation and if we chose to have that done in the future it will require much debate. We just don’t know how he would handle sedation with all the atrophy. He docs take good care of him and make great decisions. We could protest but we agree. How we got so lucky we can only thank our God above. Anyway, what we know about the CT so far is that it is no surprise to anyone, even us. His brain is very degenerated (damaged) from his last scan. Nothing new we expected that after two years. It wasn’t shocking at all. I felt bad standing there talking to Eli waiting for his little brain to pop up on screen. I don’t know what I was waiting for. I knew what was coming. I can’t tell you what I saw exactly, except I knew it wasn’t good. At least we weren’t blindsided with it this time. That was one of the first tests they did on my little guy the night we took him to the ER. You know something is bad but don’t know how or what. Same thing today just a different outlook, THANKFULNESS! I know that we are on borrowed time. I can kiss my Eli today. That is all I need to know.

We got home sent Daddy to work and took a 30min nap before it was back in the truck. Eli was so sleepy all day. He has been sleeping ever since we got home. I even took him to my haircut and he slept through that. Even when a little girl screamed that ear piercing pitch he remained peaceful. My little sweetheart. We are hoping to get in the little backyard pool when Daddy comes home from work. I just don’t know I think I would rather curl up in bed or eat a lobster. Great now I am hungry. Seems to be my note for the day. I didn’t get a chance to eat anything before we left for the appt and then they closed the Café just before I got there and had to get a muffin from the vending machine. So a lobster dinner oh wait crab dinner sounds awesome for me. Nope! I already have chicken thawing. Yah frozen chicken. Much better than some mouth watering king crab or any kind of sea food dipping in hot butter with garlic mashed potatoes on the side. YUMMY…

Ok I have to go now I will try to add some photos later.

FRIDAY before bed.

The chicken thing didn’t work out too well. We ran out of gas for the grill. I improvised and boiled it and made BBQ. I did forget to mention one of the docs concerns and it is one that is brought up every now and then. Eli does have a little curve in his back. A little scoliosis. We do as much positioning as we can. It is becoming more difficult with his size. It would be nice if we could get his new chair to help out a little. Another big problem with positioning is that he likes to be held. This is not good for the curve. I do try to stretch him out and make sure he is strait. He is so long and heavy that is difficult. It does suck so many things besides the atrophy to worry about. Everything requires such difficult and life changing decisions. Let’s just pray his new chair gets here soon. We can’t even use the lats on his kid cart anymore. He is just too big and he looks so uncomfortable. We do have those that help but it is still hard to know what equipment would be helpful that he would use. Everything is mainly geared toward learning a skill which is wonderful just not for my Eli. He is as floppy as the day he was born oh wait I do think he is much floppier. When he was born he had a real strong trunk control. His head would just look around. We want to do what is best for the little man I don’t want to Velcro him to a board and call it quits. Like I said we strongly feel we are already on borrowed time.

I wish I could explain it better. I do what I can to take care of his positioning I just wish that I could do more. Thus brings me to the realization that I do need more (professional) help. As it stands it is Chad and I doing Eli’s Care. He has Cindy come in once a week to give the little man his massage(Which he loves) Chris his hospice nurse comes twice a week for a couple of hours for vitals and stuff like that. Both have been critical in Eli’s Care. I am asked all the time if I have nurses come around that clock and well I am writing this to let all of you know. NO! I want to do it. Eli is our only child and mostly sleeps through the night. Where I need some help is during the day to work with him. The times when I do the care but not the extra workouts and daily muscle work that he so desperately needs. I know I have not mentioned the CNA it just hasn’t worked out too well YET! She says that she will be making a point to schedule better. My problem is that I don’t know how to use people to our full benefit. Truly Ginny Winn and Jo Haan have been my Angels. They come once a week and have since Eli was diagnosed. Now these ladies are not very big and it breaks my heart to know that with Eli’s size they could very easily get hurt. There isn’t a simple answer. I sure wish there were. I am so greedy I want to be his mother for as many minutes in a day I can. There is nothing I would rather be doing. I want mommy time BUT I don’t want to give up Eli time. I guess we can’t have cake and eat it too. Mostly I feel that when Eli is in heaven I will have all the time in the world and right now time is so very precious. It already seems as the door is ringing or opening often. Spoiled! That is how I feel. Chad works so hard to keep me home with Elijah and I eat it all up.

Here is a thought I saw a commercial for a show where the moms left home and the dad’s took over for a few days. What they should do is ask the moms how the time away from their kids felt. Not what they got to enjoy but how their hearts felt. Plus I know that I couldn’t possible do Chad’s job nor would I want to which leaves me right where I want to be. I guess I am sick of all the whining and complaining. Those shows are helpful to so many ungrateful people BUT one week with any parent of children like Eli and they would be kissing the ground and thanking everyone for what they have. Raising children is the most important, difficult, time consuming job ever yet THEY SHOULD BE GRATEFUL THEY GET THE CHANCE TO DO IT…. It people are grateful for their kids it doesn’t mean that their kids are going to turn out as the cream of the crop it just means that they are loved as the gifts they are. I want to vomit when I watch the news anymore. So many children so much abuse. Oh does it make me sick. If only they could appreciate their kids. On the other hand it is easy for me to ask that. Elijah has never talked back or been naughty. How trying children can be. We waited to have children then by the time Elijah came along it seemed as though we were waiting forever. Praying and asking God to bless us. And bless us he did.

Ok I have gone off the deep end again. I better go fill the pool in hopes the water won’t be so cold for swimming tomorrow. Not a chance it should be 100 again. It was today... hot stuff. Still need to get new photos posted. Sorry. Also I don't mean to affend any of you and sorry if I did. I am venting and don't mean any harm. Don't we all wish we could take the world's hurt away. Don't we all wish we could fix the wrongs. That is why we have God. That is why it is on TV to make us get our butts up and do something about it. In my little way that is why I post some of the things I do. If anything I do or say can help someone else than the hurt I go through isn't so bad. Selfishly doing this journal has helped me a great deal.

Love Ya
Ann

Thursday, July 28, 2005 1:27 PM CDT

Our weekend was really hot. Too hot to spend any amount of time outside. We have hit record heat in Colorado the last few days. Wow! I lost any motivation I once had. I even like being cooped up in the house. I think I am becoming a cave dweller. Nothing really exciting. Grandmom did get to swim with Eli in the backyard. We had to squeeze to get all four of us in our little pool. We kept Cheryl busy the whole time she was here. I am sure when she went home she slept for days. Grandmom left on Monday morning.

Eli’s health has been alright. The little guy keeps hanging in strong. We have increased his Valporic Acid (Depacote) for seizures. It seems to be keeping them at a minimum. The only problem is that with each increase in seizure meds he has to get used to them again and sleeps a lot. I did discover he is waking up in the middle of the night. I don’t know how long. I just know that I go in change his diaper and position and hope he can go back to sleep. He usually does fairly quickly. We pray it is not due to any pain. He has this thing he has been doing with his right arm. It always has to be up above his head so his fingers are in his hair. Maybe he has caught on that his hair is irresistible. It seems to comfort him and sometimes he cannot fall asleep until it is placed on his head. It is a cute site to see. We are just afraid it is due to the brain atrophy. Really it could be from anything simple to something major. I hate not knowing. His vitals are all the same. Chris Eli’s nurse is always saying that with most patients that cannot speak their vital signs speck for them. She says if Eli is in any amount of pain his body is not showing it. That is of some comfort to my mind. It is just that nobody knows for sure. My crazy little kid. Maybe it is his plan to just through mommy and daddy for a loop. I do miss having him awake. It isn’t as though we can play a whole lot but we do are own things.

Coming events:

Tomorrow he has a neurologist appointment. I know DR Bernard will be shocked to see Eli’s size. He is huge. I looked in the mirror last night as I was walking him in his room for bed and his body is darn near a big as mine.

Broncos training camp also starts tomorrow. It runs for a couple of weeks. We are hoping to go sometime next week. We haven’t decided what day yet but I can guarantee photos.

Sorry I have been absent from updating. Nothing interesting has happened and like I said my motivation level is real low. I have also been getting the Eli’s angels packages ready and out to mail for August. We have two Birthdays’ this month. Trinity 8-1 and RJ 8-16. I hope to be a little more motivated next week. After all it did cool down it is only 92 today SO FAR.

Wednesday, July 20 2005

A quick update and I am posting photos. Eli is doing pretty well. His breathing seems to be easy going. Not too much for struggling. Today was a really busy day. Daddy worked from home while Eli and I went down to Integris to see my old work buddies. That was lots of fun. Much work too. Then we were off to the mall to do some things for daddy. Meanwhile Grandmom got to our house after a long drive from Omaha and was sad that little bear was not home. Poor grandmom. Now Eli is in bed resting really well. I have many photos to look through yet so here are some that date from 6-27 to 7-16 sorry don’t have time to do much for comments. Just enjoy…

Happy Birthday Daddy!
7-21

Sunday, July 17, 2005

Last week was pretty boring. We increased Eli’s Valporic Acid just a bit and it seems to have helped a little. He had been breathing and doing well overall until today. It was really windy and I think maybe it got his sinuses running. Chad and I took turns all day holding the little man and when we did put him down he would have coughing fits until he couldn’t breath. A little cough suppressant helped that and tonight he doing well. I just put him down and he is working his way back to sleep. Daddy finished Eli’s Swing. Cindy had suggested putting a spring on it to give it a little bounce and wow. It is too fun. His very first swing set even if it is a hammock. It was made just for him. Now since the sun has been so bad we came up with the idea to put a little shade on it. Yep! It is Chad and I so we are way overdoing it. I think by the time Chad is done it will have a 8x10 tarp. Our neighbors in back are going to think we have a 3 ring circus in our postage stamp back yard. I still have to tell you all about the planting of the tree in the front yard saga.

Tomorrow will be busy as always.Happy Birthday Jenny. This week will be all kinds of family birthdays and I just know I will forget one or two so don’t be mad. Daddy’s is on Thursday and I hope it is a good day. Going to bed but wanted to let you all know that all is well.

Love Ann
Here are a couple of shots. I didn't have time to do the rest. This is Eli before his haircut. He is so cool. He was happy and moving his right arm. His big thing lately.

Monday night Late July 11, 2005

I told you that I would be better with updates this week.

First thing: I didn’t make it to bible study. I sure miss them; I am just finding it hard to leave my little guy for any length of time. This is completely my fault. It was a good thing though. Eli made the biggest messiest POOP. It was a little runnier than normal but not bad. Just really REALLY messy and yes I will describe it to you. I put a blanket on me before and picked him with the blanket he was laying on. That didn’t matter. Before I got too far I could feel it running down my leg. Yuck. All I could do is keep heading for the bathroom and Laugh. Oh I laughed. My shirt, shorts and legs were a new color and not too pretty. Lets not forget the blankets. Wow was that a bomb. You guessed it TIME FOR A BATH. Washed up and smelling much better. Grandmom called just in time to do webcam with a naked bear. No it isn’t naughty. Grandmas see grandkids naked all the time and since his is out of state we make do.

I didn’t tell you all in the last really long update that Eli got his hair cut really short. Sooooooooo Cute! My handsome guy. He just gets better looking everyday.

Monday went fairly well with only one maybe two snags. First happened early early early: Our fire alarms are eclectically connected to each other that way if one goes off in a fire they all go off. The problem is that when ones batteries die sometimes they all go off. So yep 5am they all went off then stopped and off again. RUDE! I went downstairs half asleep and got the ladder. Then waited for them to go off again so I could find the culprit. Nope they never went off again. Man oh Man you have got to be kidding me. Second happened when I was upstairs snuggling with the bear, just getting ready for the day when the doorbell rang. I realize that most people are up and showered by this time of the day but Eli and I have our own time. Needless to say I answered the door in my purple PJ’s for the lift inspector. YAH! The whole world gets to see my PJ’s. That is one thing I bought many of when Eli was diagnosed. No more T-shirt days. Too many people come and go around hear. Anyway the inspection went well. They don’t do much but check paperwork, he didn’t even ride it. Maybe the sight of me in my PJ’s scared him and he wanted to get out as quick as he could. Then I managed to fold all the laundry that I washed and dried last night and get the table ready for Eli’s 11am massage. I was on a roll. That is what happens when I get very little sleep sometimes it backfires and I become the energizer bunny. Now if only I could find that broken alarm so I could share some energy. I was on my way upstairs with the last of the folded laundry and the doorbell rang. Crazy thing three people just standing there. It seems Chris and the social worker were at the door and I didn’t here the first ring. Then Cindy came up and they rang again. Wow! Everybody at once. We all ended up sitting in the kitchen falling asleep as we watched Cindy relax little Elijah. Boy he loves her. Afterward it was time for a little mommy and Eli snuggle. I had hoped to nap but couldn’t settle down. Overly tired I think.

Wheelchair update: One referral to go and they will order. Nope it hasn’t been ordered yet and that means they can’t give me a time. I hope soon. It has been two months already. Every time I pick Eli up I must be stretching him because he is getting longer by the day. I made a neurology appointment for July 29th 8am. Oh boy I hope we can do it. Eli and I are late risers.

Oh yes one more thing. Daddy is building Eli a A frame for his hammock. His little chair hammock has been hanging in the living room for him to use since his birthday. Daddy thought it was time to build something so it could go outside for Eli to enjoy. After mommy helped Daddy pick out lumber this weekend it will be as Grandmom says strong enough to hold an elephant. I just thought the other boards didn’t look strong enough to hold my Eli. Maybe I shouldn't help with stuff I haven't a clue. Well what do I know about lumber? Nothing, before this weekend that is. Now I am educated. I want to feel comfortable swinging Eli and not have to worry that it would tip or drop him. Now and for hundreds of years I won’t have to worry. The structure Chad is building is way overkill. It is entirely my fault but I won’t be afraid to use it. That alone is worth it. I did forget there was one more snag in our day. Chad and I were taking turns staining the new A-Frame and I was the finisher. Bad. Bad. Idea I finished the work on the boards and was thinking that I would use the stain up that we had poured. I began to stain the wood fence (which will be the next outdoor project) and before I knew it I was going to town on the gate. That wasn’t so bad it was the dripping of the stain on the concrete. I guess I was too tired to care. I was out enjoying the night breeze painting away. It was peaceful so I kept doing it. Chad came out wondering what was taking me so long. After all there wasn’t a whole lot of work left on the boards. He freaked out when he saw the mess I made. When he asked me what I was doing and if I noticed the ground I replied “Yep that is why I opened the gate”. I made no sense. He looked at me shock his head. I won’t repeat what came out next. It was too funny a situation. I really DON’T know what I was thinking. It was like playing in the mud. We don’t know why we do it, it is just plain fun. I did try to clean up my mess but like Chad said Honey it won’t clean up “you are staining the fence so you are STAINING the concrete". A little crazy sure goes a long way. I think the brown spots on the sidewalk add character. Chad says "I know you can’t paint (I paint myself like a little kid would or make big messes) and I left you unattended. Never again"
I BAD OOOPS…….Well I got a start on the fence. LOL

Eli gets to see his Jo tomorrow. It has been a couple of weeks. He loves her so.

I ask you all to pray for Florida. So many people without power and the distruction caused is huge. All day I was thinking of our Eli's Angels Members that live in Florida and Georgia. I beleive they are all out of the bad spots but I prayed for them anyway. I couldn't imagine having to deal with such Devastation and a child with medical needs. Too much.

God Bless
Ann

Monday, July 11, 2005

7-8 Hello Eli’s Mommy here as if you didn’t know that. It is so Hot. Living in Colorado is like living on the surface of the sun. We are closer to the sun so we burn with less exposure time. I have to be really careful. I burn so easy. My first trip out to Colorado to visit Chad (before we were married) I burned my nose so bad it blistered and looked bad for weeks. Eli has never felt the hurt of a sunburn. We are careful to keep him in the shade or coat him with the lotion. I even found him a swim shirt to keep him covered while in the pool. It has spf #50 and he loves having cover on. I think it makes him feel more secure. Ok now for the update…

Eli’s health: He has been doing well. We have noticed a change in seizure patterns; he is having a few more a day. They suck. It is hard to even catch some of the yuckies. He has many stare or absent ones and since he doesn’t move anyway you have to be looking right at him. The other ones are the ones I hate. He gets a big smile then as each pulse of the seizure comes he squeaks. Sometimes he squeals so loud it is almost like a cry. It breaks my heart. I do what I have to do and make sure that it stops and then go about what we were doing. The squealing seizures take so much out of him. He will usually take a really long nap afterward. His breathing is alright. Some mornings he is really gunky. If he wakes up he can cough a bit and get it up. If it is one of those slow to rise days, he will rattle for hours. Chris (his nurse) said on Thursday that his “stats are the same ol Eli”. Funny how something’s can stay so sable yet unpredictable. Crazy kid of mine.

Our 4th: Eli’s Papa Dan came out for the weekend but had to leave in the morning as he had to work on the 5th. I set up chairs, a bucket full of Ice and pop, Towels, and all we would need to spend all day outside. That is just what we did. We all went swimming and Eli wore himself out. Swimming does that to a guy. We snuggled in the shade for an hour or so then I got up, dressed him and laid him on the lawn chair and that is where he stayed for a long time. He was so wore out he slept until it was time to eat. I felt bad that Papa couldn’t join us in the pool. We tried to get out all weekend but something always came up. Too cold, Too windy, Rain or just too busy. Chad and I did a little around the yard and Carrie our neighbor came over and invited us to do some 4th stuff over. We weren’t sure what to do. Eli can’t see and loud noises aren’t really his thing but could we set around the house and not join? HUMMMMM.

7-10 Ok I have been bad about getting this update out. It seems every time I set down to write my mind wonders away and then my body soon follows. I end up not doing an update. I haven’t been online much due to some busyness around the house. Eli had some pretty strong yuckies today. He smiles and screams. It is hard to see the only time your child smiles and know it is only caused by a seizure. My attitude towards these yuckies is getting really bad. Each time he has one. I brings me down. I pray it stops and I hold him as tight as a mother can. Sometimes I want to scream along with every pulse his body gives. I would say it seems like we are winding down to the last months of his life but with my Elijah I refuse to say that anymore. I guess we could say he is on borrowed time already. At the top of the page I have that the stats say two years at most. Well my little boy is over two. The stats are for infantile onset. Some children that are affected older do live to be a little older. As the docs keep saying EACH CHILD IS DIFFERENT. I wondered way back when why they kept telling us that. Surly they can tell us how old other kids lived. Now I see why there were no answers. Story after Story kids affected with Mito diseases show how strange and unpredictable these awful illnesses are.

Other than the yuckies, Eli is back to pooping ever few days. Perfect…. That is when he works best. Lately it is so strange. One week no poop and next week poop every day. I have been trying to stay up with him adjusting his Miralax with every change in the process. He seems to want to be held and is trying his hardest for us to see that he wants to be held.. Example: When I go in to get him in the morning I stroke his head and pull his arms up for a morning stretch. If I let go of his hands for just a second to grab a diaper he gets super big eyes and starts moving his head or arm as much as he can (which sometimes is just a shaky movement). At that point I just have to scoop him up and snuggle him. The times he does that and I can’t pick him it I almost cry out of guilt. I know he wants mommy and he even took all his energy to move his little fingers and WHAT mommy is going to ignore him. Tomorrow is a big day here at the Kurtz house. Chris comes (Eli’s Hospice nurse), Cindy(Eli missed his massage last week it was the 4th) and the last inspection (I think) on the lift. Wow!!!! I hope it goes well. It will be nice to have it all wrapped up. Mommy will be really busy. I am in the process of doing all the laundry. That means lots of clothes on my couch until I get to fold them in the morning. I have to call on Eli’s Wheel chair. I need to see what the time frame is. Poor Eli is so big he is falling out of his Kid Kart. His little tush doesn’t even fit all the way back. For those of you with Kid Karts he only has a thin pad left for padding every thing else has been removed for growth. When we go to the store now I have to watch real close. His head falls over, his arms fall to a hanging position and then his little tush starts sliding down. This poor kid. Maybe if we all pray for a rush on his new chair it will come a bit sooner. For those of you that have never ordered special needs equipment there is NO RUSH. It is always a time frame of thee to four MONTHS. That is if all the referrals, paperwork, ordering, adjusting. Shipping, and insurance approval gets done. Please pray there are no snags in this process for my little bear is not safe in this chair anymore. I don’t even want to take him for a walk in it anymore. Besides that I think I have about 5 major calls to make and I hope to end up and bible study tomorrow night. I sure do miss everyone. Getting away is not always easy.

I have some great photos to share. The problem is that I took them from our 35 mm , developed them and forgot to order a CD. Now I have to scan and do all that stuff. So maybe soon.

We do have one major event for our family coming up. BRONCOS CAMP. Every year the Broncos invite the public to view training Camp. It has become tradition. The first one was just a week before our future crumbled. Eli was diagnosed with Leigh’s. Then of course we didn’t think he would live to see a second one so we HAD to go and now it will be his third. Each year we had to upgrade broncos stuff because our little guy outgrows everything. We are going to make our trip to the stadium soon to get his little Jake Plummer jersey. My little bronco fan. Ahhhhh! Sweet! It is such a cool thing for kids to do. I never got to do something so cool as a child. It makes me happy and sad at the same time. Happy because he gets to do it and sad because he can’t really grasp the experience. You know like a little kid would be big eyed with they see the quarterback go back for a pass or the three hundrend something center close up. Or even the whole team in shorts doing the stretches from only a few feet away. The wishes a mother had for her little guy…. And the wishes a mother had for father son activities. I don’t go there often because I see the hurt of sharing all those things with our child. Every parent saves things from their own childhood to hand over to their precious offspring. For Chad and I we look at these things and put them up in the closet. There are so many "THINGS" I have to remember that THINGS is all they are. One day the perfect home for these things will come along. I know that there is no preparation yet I still try to brace myself to live in the childless category. It really sucks that we are categorized like that. Takes me back to high school except we are older and been through a heck of a lot more. I wanted to grow old with full turkey dinners with all the laughter of a growing family of Sons, Daughters, and oh the grandchildren. At this time it feels that all of that will be gone. Time will tell. God will reveal his plan. Really I don’t want to know right now. It is much too painful.

Alright alright this update is all over the place. I guess I had way too much fresh air today. You know in Colorado we also have that whole the air is thinner thing. Maybe I have just gone insane. Goody I will have great company I know a few other moms that have visited the insane world lately too.

Monday midnight. Boy I thought I could get this in before midnight. NOT! I am still up doing laundry and to think there are only three of us and with all that laundry that we are changing our clothes five times a day EACH. Well here is the update, I really don’t have the time to go back and fix what is confusing so good luck reading it. I do need to update more often this week. I have many people to actknowlege and give thanks. Everytime I leave this page I think of all the people that I have missed and need to give a special thanks to. Know that I am thankful. Just busy right now.

God Bless,
Ann

Friday July 1st 2005

We are doing well. Hoping to take Eli in his little pool on Saturday. Today we spent time with the inspector for the Lift and repairing molded trim on the house. FUN! I know you all wish you were here having such fun. YAH! Well I hope to get to a better update tomorrow. I only had a few mins to spare. God Bless and have a SAFE 4th...

Tuesday, June 28, 2005
Elijah is doing well today,Coughing a bit more than yesterday. No big update I just wanted to share some photos before we get more and you all miss out. They are of Eli and Daddy on Father's Day, Eli and Daddy ridding the lift, Eli, Mommy and Colleen at the pool last Friday. I will update soon. Until then have a great week.

Ann
God Bless

Sunday, June 26, 2005

I will start with Friday….. We did get to go to the country club with Colleen. I can only thank her so many times but I want to throw one more out THANKS COLLEEN. Anyway, Eli did not baby Ruth’s the pool as I though he might. Our little outing was perfect. I couldn’t have ordered a better swim time. It was Eli’s first time in a big outdoor pool. We pulled, pushed and yanked that kid around just to put his little wet suit on him. That is when I really wish he could let mommy know what is in his mind. After the torture we got in the pool Whew coooold at first, then after a couple of seconds I was good. Colleen handed Eli to me and he did the some and after a couple of minutes he was good to go. He floated and bobbed. He really liked the sound of the other children playing. I thought he might like to feel the water so I took his wet suit off. NO! he was kind of mad at me. He clung to me with all his might and looked afraid. It took some time to get him to come around and then he was only happy when mommy held him close and ran across the pool. Yah that is a weight loss program. I did let Colleen hold him a few minutes in the pool. I guess I am a really greedy mother when it comes to Eli. I want to have him all the time. Then I felt Eli was done after I think 30-45min. which is great. We got him out and laid him in the sun naked,(He loves that) Got him dressed and off to sleep he went. Colleen ordered us the best hot dogs ever. She had to get going but I stayed for a little while giving Eli some time to rest on his little mat in the shade. He was all tucked out. They are resurfacing many of the roads around town. This was unfortunate for Eli since he was so tired every time I went over a uneven area his little tired eyes would pop open then close again. I got him home, put him in his Love Sac he slept for the rest of the night. I only woke him up to give him a bath. I had to get the sun block and pool yuckes off. He is a crazy kid.

The LIFT: is great. I still walk the stairs it is just great for taking Eli up and down. Oh how it is nice. Eli can ride his Chair up and down. The important thing is that he is safe and with him in his chair there is no chance mommy with trip on a stair and fall with my big guy. He isn’t getting any lighter that is for sure. The lift is a real blessing and I thank all of you that helped up in getting it. I may not know all the names of who donated but I intend to try find out. If I have not thanked you personally please know that our family will forever be grateful to you for thinking of us enough to donate. The gift is truly overwhelming. Some days I feel guilty that so many supported us for the lift. I just want everyone to know that I am forever in you debt.

The Rain- Colorado has some funny weather. If it looks like rain you don’t have to worry much. It never really produced that much. Except when the freek storms pass through. Friday afternoon after swimming it was sunny one minute and a downpour the next complete with hail. I tell you all this for a couple of reasons. Our lift leaking. Not a really bad thing still it was lots of rain inside. I called and they said that it wouldn’t hurt the lift but where the house meets the lift could be a problem. They made special arrangements to finish up some things on Saturday to make is better uncase another FREAK storm rolled through. I felt bad two guys took time away from their families to keep our house from leaking. I thank you guys. You know who you are.

Saturday-We decided to visit some cemeteries and find a peaceful place for Eli. It was wonderful to have him with us while we went. There is one place we like and Eli marked his territory. He pooped 2 times while we were there. I am not sure what that means. I was just happy for the long awaited poop no matter where I had to clean it. We did ok emotionally. I was doing really great to my surprise that is until later. Chad and I started to talk about some of the other arrangements and it just keeps me in check that my little guy won’t be here for me to hold. How will I let go? It was a great day and I was so thankful we got to do this as a family. We are not very far into planning. I guess you can say we are procrastinating. It is something we shouldn’t have to do. The reality is that WE DO.

Sunday-Daddy had work calls. Not to many and it didn’t stop him from coming outside and helping Eli and I with the yard work. I even tried my hand at replacing sprinkler heads. It went ok WITH Chad’s help that is until his turned the water on. I asked him to but wasn’t ready and I was fighting a volcano of water. The best part is that I was sitting holding the sprinkler and couldn’t move. I had wanted spraying all over me. Finally Chad heard me and shut them off. FUN Yah that is what we call it. By the time I was done my shoes were full of mud. My cream shorts looked like I took a dump in them and I was full of Colorado clay.

Eli is doing ok. He is still gunky from time to time. We just wipe him off and suction when needed. Whatever does the job.

I sure hope you all had such action packed weekends. I do have a few more things to add, I will try tomorrow.

Ann

Thursday June 23, 2005 before bed

Lift News: It goes up and down up and down………. YAH! I thought something was wrong with me and didn’t want to share out of thinking I was not grateful. Now that I am fixed I will share. My excitement level about the lift has been kept to a minimum. I felt bad that I wasn’t happier when they started. I think on the fact that how much MONEY and TIME have been put in by so many to get this for us. I also keep in the back of my head that Eli is terminal. Therefore I was just in a strange place. BUT NOW I am HAPPY , excited and GRATEFUL.

Thursday morning I went and got Elijah out of his bed and into ours. You know the daily snuggle thing then when it was time to get up I looked to my right and there it was all ready for us to get in. I took four steps off my bed and we were on the lift. I went downstairs with out even waking up. The real excitement came a little later when I took Eli upstairs for the washing the face and tush thing. We got in the lift WITH his wheelchair. Oh my God it is only the second time the chair has been on the top level of our house. WOW this is going to be so cool. Now that Eli has had a chance to use it am Happy really happy. I can see I will gain a few more pounds from not using the stairs. I hope not. Amber is confused. She watched Eli and I go up then paced downstairs waiting for us to come out. Chad had to take the dog for a ride so she would get it. I don’t know if she does yet but it is funny to watch her anyway. Maybe we can train her to operate the lift then I wont have to. I will post photos later I am up way to late and Eli and I are going swimming at the country club with a friend of course. We are not members but our friends are. I think it will be a caddy shack thing. Just one little problem which I hope gets solved before we go. Little man is holding the poop again. Miralax twice and nothing, it has been 5days I think. I knew the poop everyday was too good to last. Like I said I think it will be a caddy shack thing although they won’t be baby Ruth bars floating. Pray he poops before we go. I would hate to embarrass our friends they are really good to us. Tonight after daddy got home from work we did have a chance to take a dip in our little pool. AHHHH so nice. Then we all took a ride upstairs on the lift. Wow is this Disneyland. Who needs to travel. We have it all right here.
God Bless Ann

Have a great weekend Love Ann

Sunday, June 19, 2005

Hello everyone and I hope you all had a wonderful father’s day…. We did. Daddy slept in well an hour or so longer than norm. He has a really hard time sleeping so this was awesome. I got Eli up and went down for a few hours of snuggle time then we played pass the Eli so mommy could do the breakfast thing. Elijah seemed to have a lot of mucus today. Coughing, coughing, and coughing. Not really getting much up just spit and bubbles. Well as a family we managed to stay inside most of the day. Moving from place to place not doing much of anything. Then it was time to spring into action. You see we spent Friday night and Saturday repairing Eli’s pool that we got him last year and finally it was fixed(We think). We waited until later so the Colorado sun wouldn’t fry us in the first ten minutes. The whole family suited up and off to the backyard we went. Oh it was such fun. Chad got in the pool with Eli then mommy joined them. Elijah really loved it I could see it in his eyes. The water was perfect and there were times when Eli wanted to just fall asleep. When we were finished we wrapped him in towels and laid him in his bath chair. I dressed him and wrapped him back up. He was so relaxed he went to sleep right there. No bothering him. I cooked dinner and we ate outside. I hope Chad had a good day because I sure did. I don’t think I could have asked for a better day.

Last THE LIFT NEWS:
More of the Lift is done but not finished. They will be back out tomorrow and the hope is that it will be up and running by the end of the week. Crazy-Crazy It is still funny to think that we are going to have a lift. Our neighbors that don’t know Eli or anything about him are starting to wonder what this growth is on the back of our house. You see our yards are so small that I am sure a few hundred houses can see the lift. We say “OH WELL” It is really their problem. The lift may not be the prettiest thing but we need it. If anyone has a problem with it I will gladly give them a 50 lb bag of sand to carry up and down their stairs. Really that would be easy. Pray that the rest of the process goes smoothly.

Wednesday, June 15, 2005

Today went by very fast. The house was full and rumbling by 9Am. Chad is home all week and the lift guys as well as our contractor were all running around. Eli and I don’t know what to do with them all. Really we want our quiet snuggle mornings back yet there really isn’t anything to complain about. Eli will be able to ride his chair upstairs. I did notice today that the neighbors can still see into the lift while we are using it. Only through a foot or so they would have to look real hard. You all know what that means. No riding down before I get dressed for the day. Eli and I went to lunch with Colleen at her country club. Wow Fancy. We saw that they have a pool there and Colleen said that maybe next week we could take Eli. I hope that would be so much fun. Anyway they all made good progress on the lift and it is very close to being finished. Wow lift rides soon. We could have a fundraiser. No I don’t think so. Not sure when they will all be back I know that it will be all finished at that time. Cooooooool I will post different photos after I find my camera and then download. Chad had it last so I think it is in the garage. I pray you all have a wonderful Thursday. Who knows what mine will bring. I would like to get out and build (out of scrap) a little something for Eli’s Sweet Peas to climb up on. Surprise Ann they are climbers. I didn’t know. Oh well they will be nice in his little garden. Better go I have to give Elijah a bath yet.

Last THE LIFT NEWS:

Many of you have supported and donated to help us get this lift. I want to share so much of it with you. This week has just been crazy. Lots of work to be done tomorrow so here are some up to date photos.

Eli's Angels NEWS: We are still writing letters for support. Nothing substantial yet but we will keep trying. A few new kids will be added soon. They are in the program although they need to added to the members page. Here is a list of books that we would like to distribute to the children. Please help us by picking one or two and sending them to us or send Boarders or Barnes and Noble gift cards for us to purchase them. Oh and we are in need of children’s CDs Music that is fun or soothing.

The Tiny Snowflake- Arthur Ginoifi
Birthday Monsters-Sandra Boynton
What about Heaven-Bostrom/Kucharik
You are special, little one- Tafuri
The legend of the THREE TREES- Boardbook adapted by Catherine McCafferty
If I only had a Green Nose-Max Lucado
The Crippled Lamb- Max Lucado
A very special Critter-Gina and Mercer Mayer
Everyday Angels-Moulton/ Winget
The Giant Surprise a Narnia Story-Hiawyn Oram/Tudor Humphries

Tuesday, June 14, 2005

Oh boy of boy. I know that I will be beat by the end of the week. Eli has bounced back from his little breathing issue. Who knows what really caused it or who cares just as long as he is good. We went to the mall today to make a build a bear for a friend that just had surgery. It was fun but Chad and I are really out of place in “Kids” places like that. It is partially because the longing we have for Elijah to have what every other child has. Then the selfish thoughts that after Eli is gone there may never be anymore children for us. Only God Knows what is in the plans, for us taking the chance of another biological child is much too risky. Some of you have asked before and since we do not know the underlying cause of Eli’s Leigh’s our chances of conceiving another child affected is 0-100 they cannot give us a percentage unless they know what the genetic breakdown is. Even so it is a roll of the dice. For us the chances are too high. I don't think I can do this again.

It seems lately I have been surrounded by pregnant women and babies EVERYWHERE. I am happy for them yet after I have passed the 30th one at the store I do get a little jealous. I try to think that I do not know what they have had to endure in their lives and I look at them and see a beautiful pregnant woman. Just as they look at me, they do not know the journey that I am on. The babies oh the babies EVERYWHERE, I feel like I did before I had Eli the wanting oh the wanting. I just smile and say a little prayer in my head. I pray that everything they go through can be healed. I pray their parents never have to know the pain that Chad and I feel. The parents will never know me nor will they know the prayer I prayed for their newborn. Again I am proud to call Elijah my Son. I don’t know how another child could live up to his standards anyway. Like I said God Knows the plan for us.

Last THE LIFT NEWS:

Many of you have supported and donated to help us get this lift. I want to share so much of it with you. This week has just been crazy. Lots of work to be done tomorrow.

Sunday, June 12, 2005

The weather has been crazy. YES STILL! RAIN here that is crazy too. In Colorado much to disbelief it is like the desert really dry. Then in between we have a few teaser days where the sun is out all day. The furnace is going to break soon. One day the heat, the next the air conditioning. We could hack the changes but with little (52lbs) Eli we have to keep the temp from dropping or rising too much. The damage in his brain doesn’t allow him to change like the rest of us. He has handled the changes pretty well. I have seen better days for myself sneezing all the time.

Eli had been doing fine that is until today. He snuggled all day with mom or dad until 1pm then we had to move around a little. I noticed a change in his breathing. Rapid! I hate rapid. It usually means that Elijah is getting sick. I put him on O2 for a little while. It didn’t change the pattern. I wish I could explain every thing to you guys and most of the times I do. I spend so much time with Eli that even without the meters, machines and others things to go beep in the night I can tell where most of his problems are. His color is good his just has rapid breathing. Tonight I tried a few things and nothing worked. Now I have him lying on the floor with nothing on with a towel on his head. Finally he slowed his breathing. Who knows why or cares just as long as it is much slower. In my mind it is as if he had one big long seizure. That is what the breathing pattern sounded like to me. The atrophy in his brain affects temp regulation. Mito kids can often use what they call cooling vests. At this point I don’t think it would help Elijah, when he has these episodes where I think they are silent seizures from the neck up he gets red in the face and fever hot. During this the rest of his body might be ice cold and when I say Ice cold I mean blue cold. Decisions are hard to make. Do you cool him down or heat him up? We are always tiring to figure out what to do. Chad and I were watching a movie today and one of the Docs said to his patient “The brain is so complicated we just don’t know enough yet” Isn’t that the truth. I know that his disease is in his DNA yet in Elijah the most that has been affected has been his brain.

LIFT NEWS: I hope to get photos up soon. Sorry been busy. They are coming on Monday to do a few more things and I think they said it should be done by the end of JUNE. Yah No more will I be frightened to carry Eli up, down, up and down our stairs. It will make him happier to because he can have his chair upstairs too. Much better than lying on the floor or on a bed all the time. Oh back to the progress. Our neighbor Paul is doing the electrical work and was over today. I guess we will seeing lots happening this week. I sure won’t miss the big plastic tents up in my room. Down stair it only covers the remote so to turn channels you have to lean a little. Upstairs is much more of an issue. I sleep on the side of the bed that the tent is on any air movement and it sounds like a trash bag blowing in the wind. When I was a child I could sleep through anything now it is rare that I don’t hear every little noise. Sometimes people look at me and tell me I look tired. I laugh because right now who knows some nights I sleep really well and others every little noise is like torture. Picture this. Last night it is 2am I had been sleeping for only a couple of hours. I wake up to the tent snapping and the sound of a roaring (Chad snoring) freight train at my head. All of you that think you can cure sleeping with a loud snoring person forget all that you know I have tried it. Staring at the ceiling works best.

Hope to have the pics up soon. I have to tend to my little man now. Bed time and Pray that the breathing stays at his normal. That rapid stuff makes me feel as any minute he would go into cardiac arrest. Not today I say not today. I am thankful always for just one more day Lord. Thank you

Ann

Eli's Angels NEWS: We are still writing letters for support. Nothing substantial yet but we will keep trying. A few new kids will be added soon. They are in the program although they need to added to the members page.

Eli’s Angels

Sunday, June 5, 2005

Just a short update to let you all know that we are good. Sorry no new photos yet. Maybe tomorrow. I just have to download out of the camera. The weather is still up and down. Rain/cold one minute then sunshine/heat the next. It is really odd to have your heater on one day and the air on the next over and over. We would go without the air, except Colorado nights get chili and we can’t leave the windows open as Eli can’t handle the night air. Then if we leave the house shut up with no air it is 5000 degrees upstairs. Crazy we can’t win.

Eli has been doing well. Still pooping a couple of times a day. Strange so much talk about poop. Our lives revolve around the stuff. We have been spending time outside in between the rain storms. We get out here and there. Today Lauren (one of the neighbor girls) helped Eli and I deliver bookmarks and flyers around the block. Amber (our dog) even wore her Eli’s Angels Dog scarf that LeighAnn made for her. Thanks LeighAnn it looks great and she was all dressed up for the part. It was Hot and good thing that Lauren was ready to go home. I was too. She was great. It is so nice when the young kids want to help out. I don’t know if she grasped all that we were doing but it seemed she had a good time. That is until we all got so hot.

Chad has been working like crazy call after call. It has to be tough working for home when work is crazy. You pick up the phone, put it down, start to eat, pick up the phone, food gets cold, then eat and repeat all day. I thank all that work under Chad for working so hard on the project that just can’t seem to end. Hang in there guys.

Thank you Kristi P for the: elisangels.org that is so cool. I am sure that many people would like to visit Eli's Angels site without typing that long address. Thanks again.

I hope all of you have an awesome Monday. Eli gets his massage and his visit from Chris.
God Bless
Ann

Oh my I cannot believe I almost forgot to tell you all what Amber and I did on Saturday morning. I will try to be short but I am so excited:

There is a care center near our home. I have stopped in there before to ask about pet visits. I thought that Amber would be good at it. People are always telling me that she could do it. It took us a long time to follow through. She isn't certified-maybe someday. We met up with Paws for praise they are a group from a local church that visits the care center once a month. The leader took one look and Amber and heard we wanted to do visits and said “What a blessing” I guess the group had a few move out of town and others that don’t come anymore. I hate to be crazy about this but I was truly amazed at how well Amber did. She is really really good at the pet visit thing. She didn’t even go nuts when she saw Cloudy the groups CAT. Yes ! CAT! Amber was so sweet. She even gave kisses to the people that cupped her face. The response from some of the residents was too precious. For her first visit ever I am just in awe. I thought I would have some control issues off the bat but NO she fit right into the job. Now she can earn that expensive dog food we have been feeding her all these years. Just kidding. I was proud of our Amber. Dogs are so unpredictable and she proved herself.

The best feeling is that I can give back a little something to others. It isn't the same people (there are so many) that have supported us through this journey. We have had such an outpooring of support I could never give back that amount that has been giving to us. I feel that my recieving cup is full. That is when I start feeling a little guilty for all that others do for us. It is a huge circle and I have a need to do something. However I enjoyed it so much I don't know what cup to put it in. I can’t wait to go back and it was nice to do something without having to worry about my little guy. Daddy was in charge.

Tuesday, May 31, 2005

Lift News: Sorry I still haven’t taken more photos. Don’t worry nothing new has happened. It is kind of on hold for a week or so. The doors and lift had to be ordered and it all is like baking homemade bread. You do something and then wait, do something else and then wait and in the end we get a lift.

CB UPDATES: I have tried to sign on many times and Caringbridge is making lots of changes to be able to add more families. Just know that if you have trouble getting on keep trying. It is not your computer or networks. You might see some changes around the sites. Elijah's site should stay the same for now then who knows. His page is considered a Classic page now.

Monday was so boring around the house. I am used to it but that husband of mine was driving me nuts. It isn’t his fault he has been so busy with work that I don’t think he has a shut off button. He didn’t know how to sit still. Today we must have gone insane. We thought we should plan something so we didn’t run into the same problem. Really I would have looked bad if I had to lock Chad in the basement. We planned to do some Eli’s Angels stuff. That is always fun to do as a family. Driving around town giving bookmarks and flyers to a few bookstores was a hit. Only a couple refused. That’s ok. We just want people to know what we are doing with out paying someone to advertise for us. By the time we were done I was tired and ready to curl up with bear but now I was suffering with the “have to do something syndrome too”. I hate that. We finished the night off by watching the recorded season finally of CSI. It was great with no commercials. I can’t believe how much time we saved. I did however take us two weeks to get around to watching it. It was a beautiful day out and we spent it driving from place to place. Chad works from home tomorrow so I plan to get plenty of snuggle time in with bear to make up for the lack of today.

Today was so much fun and even better that we did it as a family. At times it was a little nuts. When I tell people Metabolic/Mitochondrial I either get a blank stare or 5 million questions. I do prefer the questions and it is hard to answer them in prompt to. I should be used to it by now even in daily life at the bank, the store, everywhere we go the questions are there. I should have every answer prepared. Really the only one threw me for a loop I didn’t answer it in true Ann form.

The long form;.
Of course it wouldn’t be me unless I shared. Here goes. It was the quickest stop of the day at the Family Christian bookstore. I went in by myself. After a few intense medical questions I was asked “How do you do this?” I thought he was talking about the non-profit SILLY ME! Then without a word from me he adds “As a parent? How do you get through this?” Great` not the one I was ready for or had a simple answer. I would have cried then told him a few hours of the truth. I stumbled and said “there are many ways I get through it”. My mind stuck in the day to day. I said “I hold him, I love him, I READ to him and I spend all the time I can with him.” Then I went on to say that being out today with my family (pointing to the truck where Eli and Chad were) Is a wonderful thing. I don’t know what he was looking for. The easy answer would have been to look around at my surroundings and see God’s words and say GOD. Why isn’t that what I said? I have know idea. I just don’t know why I didn’t say that. GOD knows. HA HA I know that if I would have said GOD I would have stopped for a moment, looked at him and said so THEN STARTED CRYING. After all it is more of a testimonial at that point. I get tired of crying in front of people. It is always hard to open your life and YOUR deepest hurt up for all to see. Then to answer questions as to why your son at two years old is so very handicapped. I am not so good at the ME questions. We still have a long road to travel. I may take things how I do now because I still have my Eli. I realize that won’t always be. As I look back at the conversation I wish I had the time to tell him more. How God has a presence in my life. How I have put one foot in front of the other day by day. How each person that has been put in my life has made a difference and I have learned from each one. I have meet some of the greatest people through my journey with Elijah. I am not the person I was, nor am I the person that I will be. I have been humbled and humiliated and yet I have so much to learn. I sit hear yearning for the knowledge that I don’t have. Maybe I didn’t answer the man at the bookstore but I know the answer in my heart.

*Oh please say a prayer for all that receive a bookmark from Eli’s Angels let them be led to at least check it out. I want them to know about our precious gifts.

Love Ann

Sunday, May 29, 2005

I sure hope you are all having a wonderful three day weekend. It is Memorial Day tomorrow and I wonder about all those that have passed before us. I pray they found peace. It used to be a family tradition for us to drive around to all the small Nebraska towns to visit those who had passed. It was a way for me to know those who I may have never met or those I was too young to remember. I thank my parents for not sheltering me from the experience of death. Now my family is so spread out all over the country. It seems like the times have spread families all over. We are not able to visit the sites just remember those that have passed always live through your memory of them.

This week has been beautiful out. We laugh because the weather was beautiful until of course today. Hot, HOT now Cold BURRRRRRR…and wet…

Monday-Was a crazy day. The work on the lift, Eli’s massage and his nurse kept things moving. The rest of the week seemed to just evaporate. Usually around us time stands still. Eli is still the little poop monster that he was last week. Chris and I think it has to do with all the extra mucus and pushing from coughing. It could also have to do with the degeneration of the brain. Lets just go with the mucus stuff it sounds better. He has been doing fairly well. Coughing a little during the day but overall not much. Pooping 3 to 4 times a DAY. For those of you that are new to Elijah’s story this is not the norm. Eli’s NORM is every 5 to 8 days. Chad even got to change one yesterday. YAH! Friday was another very busy day. Eli and I had to get to ACE hardware early we love rebate sales and they had a good one this time around. I don’t know I guess it is fun. The things we do for fun. Crazy! It was another day of people in and out of the house. Eli did meet a very nice lady by the name of Julie. She came over to resize his kid cart. I wish you all could see the difference. It was just resized in January. He is getting so very tall and big. Julie fitted him for a new chair. I don’t cross my fingers anymore I just do the time. They say it should be a few months, at least the process has been started. I was concerned for Eli. It seemed he was so big for his current chair that his head falls forward every little bump or turn we take. With the new adjustments it is much better and I hope it will work for the next few months until his new chair comes. Ginny came while Julie was here and as soon as she left I quickly got out to mow the grass. Then Chris pulled up for Eli’s end of the week checkup. She said he sounded much better the congestion is back up in his throat, again NORM for him. He can’t clear is out of his upper airway and we deal with that best we can. Mommy is feeling a little better. I am afraid to go to sleep because when I wake I have to start clearing all over again. Sneezing, coughing and runny eyes hit me right away. Chad said he looked at the allergy meter and not much but cut grass and something else were on the meter but low. I am starting to think that I am allergic to my life. Sorry I found that funny.

I sure hope you all have been keeping busy. Saturday was lots and lots of stuff around the house. I can’t say that we did anything specific we did spend lots of time outside. I bet it was me staring at the beauty of Gods creation. I love green and the flowers. I love to be outside. I was an art major in collage and for one of my classes I sat outside to do my homework. Trees, buildings, flowers, people, and some really strange stuff yet all of Gods had. Here in Colorado it is hard to admire the beauty of the trees. There aren’t as many. It took me a few years to appreciate Colorado for the green that it is not. It took me even longer to figure out how to grow things on the surface of the sun. Or as some would say our back yard. I have heard it referred to as the moon before due to all the holes Amber and Barley dug over the years. However. I have filled most of the holes from the dirt dug for the foundation. I may not break and ankle after all.

Eli’s seizures are still present. They have changed again. He is having some strange laughing seizures. Anymore it is hard to measure the number of seizures he is having. Most are absent or some call them starring seizures. I have to take a second glance and sometimes even touch his face to get a reaction. I can be happy the have changed. It is so hard to watch the hundreds he was having. The strange ones are still hard to watch as he goes from moving his eyes to squeaking and even a sound that I can only say is a cry. I know that it has nothing to do with a cry it is just a seizure. I haven’t heard my little man cry in so long. I wish I could tell people at 3am when they are up with their newborns to cherish every cry. As I found out you may never here it again. I try to make light of the situation when we go shopping. You know the little kid that is screaming at the top of their longs and stomping around. I stroke Elijah’s hair and say “you are such a good boy - Mommy loves you ”. There are the times I can’t get past my selfishness/pity on myself to find my humor but I try.

Last –Today Sunday. Burrrrrr Cold we woke of to a very cold house. It seems that when Chad asked me to turn the air on last night I must have been out of it because I set it at 64. My first thoughts when I woke up were to run and check on Eli. Not so different from my norm but he can’t regulate his temp very well. I was so scared I would go in an find an Eli sicle. NOPE he was as toasty as could be. Sleeping peaceful and covered with a quilt that a good friend FRAN made for him. I guess it was the quilt that kept him warm in mommy’s opps. Outside today wasn’t even 64. Chad came down and turned the air off and the heater on. Chad went out for yard work I choose to stay in with Bear. We snuggled for a few hours. I decided we had enough and we dressed and went to Home Depot and Lowes. Our trip to Lowes was interesting and very painful. I went out in the rain and pulled the truck up to the door. That way Eli wouldn’t get wet. I picked him up and opps. I slipped and dropped him in his car seat. Although he was fine and in his seat on the way to the ground I only hit my Knee and I hit it good. I can only hope it heals fast. It hurts like crazy. I feel that it was long over due. I get away with so much and never fall.

Next day
Monday- It is another cloudy chili day out and we are stuck lounging around the house. So much cleaning to do and yet the whole family is in the office playing with our computers. Eli made a stinky and already had his bath. He is now on my lap sleeping. I don’t think he cares what I do as long as I am holding him. What a treat for me. He is such a cuddle bug. Since he got his bath he smells so good. He has melon shampoo and yummy. He is smells good enough to eat.

I need to post some more photos of the lift process. Sorry none today. I have to take them first.

God bless you all and have a wonderful day.

Ann

Love Ann

Eli’s Angels

Monday, May 23, 2005

The sneezing, coughing continues at our house. Good news is that Elijah’s lungs aren’t as full. He seems much clearer still coughing but not as much. Chris came today and said he sounds much better the congestion is mainly in the upper airway and lungs. That is normal for our little man. Mommy on the other hand can’t go outside without sneezing or itchy eyes when I come back in. Tonight after a nice spring rain I went out to look at our flowers(yes I am addicted) well the moister had brought all the slugs to the surface. I got out my slug killing thongs and went into action squishing all that I could find. They are eating my beautiful flowers, the leaves anyway. Then I went to Eli’s garden and did the same. It someone out there knows a good way to kill off slugs or any reason I should keep them around please share. I know my neighbors thought I was strange I must look like a little kid playing with bugs. That shouldn’t be anything new to them. I always was sort of a bug freak. I loved to play with worms. Sick I know. I did work at a pet store during collage and learned a great deal about bugs and animals in general. Anyway when I came inside my eyes were burning and watering. I did some drops and yet they still hurt. To top it off I have been sneezing off and on all night since. To tell you all the truth it is all my fault I often for get to take my own meds and well zyertec(sp) is one of them. It really helps with my allergies. Boy does it help. I sure miss it when I forget. Humm with all the meds I give Eli in a day you would think I could remember my own. No such luck.

Here is another “the neighbors think I am crazy story” Friday my new rocker was finished and the stain was dry. Eli and I tried it out in the morning for a hour or so and then ran some errands and sat in it for another hour or so. My neighbor Linda saw us the first time and then stopped the second time and said have you moved or have you been there all day. Saturday morning we went out and read the Lion the witch and the wardrobe in it. I love it. I know that it will be used so much. We have to run the air because of the allergy sinus stuff and it is nice to enjoy and hour or so at a time with my bear outside.

Today was also a very busy, fun, people, tiring and productive day. That is a lot to say in one description so I will TRY to be short about it. 1)Michael the contractor was her first thing getting right to work(This is a Good Thing) 2)Chris in first to check Eli, I snuck up to Eli’s Bathroom because our was open to the contractor cutting through walls.3) 2 gentlemen from freedom lifts to check specs 4)Cindy came bearing a gift it is called a grabber and it is really cool. She worked him over giving his much love message then mommy took him up to the guestroom where we spent most of the day. I gave him his new chew toy and wow. He didn’t let it go not even for a second and this went on for a hour or so. It put him right to sleep.

Enough of my ranting on with the photos. That is why you all come here anyway. RIGHT!

First up is Eli and the chew toy I had to post these because I was amazed. 1st one was right after I gave it to him and the 2nd one is 5mins later fast asleep. I guess he likes his new toy. I can tell we might have to invest in a few. Cindy says that people loose them long before they are chewed through. Thank you Thank you Cindy.

Thursday, May 19, 2005 4:21 PM CDT

Today the sun is really shining and wow a very strange day indeed. I don’t have any lights on in the house and I was blinded by the sun when I went for the mail. It is Hot-Hot-Hot!!!! Chad even drove his motorcycle to work today. I don’t think any of you know this fact but I once drove one two. We sold it after we found out I was pregnant with Elijah. Someday I will ride again. Now I have more important things to do.

Eli was up early wanting to snuggle I got him out of his bed and into my arms. We do this in the mornings. I snuggle with him until it is breakfast time. Today we had to get going a little earlier and when I say going I really mean it. I laid Eli down on my bed so I could shower. Then I couldn’t resist. I crawled up next to him for a few. In Eli form he looked at me and pooped. He got a bath right off. He is an afternoon bather so the morning bath was a bit strange. I have changed so much poop in the last few days I think it covers all the diapers I have changed in the last month or so. Tuesday he did it 7times total. None on Wednesday and two again today. We ran Pedialite in his pump the past two nights just in case he pooped too much. I really don’t think it is anything to worry about. With all the pushing from the coughing and all the drainage I think he is just fine. Chris came today and did say he sounded a little clearer. That is good. I didn’t think there was much change.

Lift News:
Our lift has broke ground the contracktor has dug on huge hole in the ground and they are getting ready for the concrete. Inspection tomorrow.

Eli’s Angels

Wednesday night

Wednesday is almost over. I just put Eli in bed and he is doing ok. Suctioned him a couple of times. He still has lots and lots of gunk. He coughs plenty until he gets tired then it is my turn to help. He seems to be about the same no change. I am still the same with my stuffy nose and coughing so I bet whatever it is just needs to run it’s course and well I am almost a week ahead of Eli. I still don’t have my voice back fully. We did get some time outside today among the beautiful weather. For mothers day Elijah got me a rocking chair for outside and I just can’t wait to use it. We love to go out for a few minutes each day even when the weather isn’t nice enough for a walk it is still nice to get out of the cave. Well it is a wooden rocker and had to be treated before it can stay outside. So today Eli and I started the treating process. WOW it is so beautiful. I just can’t wait it is driving me crazy. Now when I want to spend our time outside I hold Eli and sit on the concrete. Last week my bum fell asleep and my back hurt all night. He is 50lbs and thinks he is 10lbs. My body knows the difference. Back to the chair, It is in the garage drying and I think Chad said it migh need another coat which means maybe we can use it by this weekend. I am toooooooooo excited.

BIG NEWS:
The lift stuff has been a long, Long, LOOOOOOONNNNNGGGGG, road and it might be coming to a wonderful point. Tomorrow the contractor is starting the footings. It is still surreal for me. I never thought we would have it. It seemed that far out of reach and in our life I try not to get too excited about things that may not come about. I am still pretty calm and sarcastic about the whole thing as really it scares me. It is such a big change. I will adjust it will take some time. However I will try to get photos along the process for all of you to see what is going on.

Mommy Note:
It has been a while since I gave you all insight into my head. Some because my head is full of snot and some because I get tired of being such a bummer all the time. Plus I have had other things to say and maybe I just didn’t want to share. Something is eating me tonight and nothing can be done about it so I guess that means I have to share it and get it out. I was putting Elijah’s clothes in his closet and saw his kick and play. This toy will always bring such tears. It was given to Eli by a very sweet neighbor that used it for her two children. At the time Eli wasn’t ready to play with it. After his problems started and he was diagnosed with Leigh’s toys were difficult to adapt to his needs. He never advanced past that of a newborn. He never really learned to roll over maybe once or twice. He just wasn’t strong enough. Of course that doesn’t mean I let him off the hook oh did we try. I have never seen my little man meet his milestones. Some parents dread seeing there children stop walking or many of the things they once did. I thank God sometimes I don’t have to watch that. I do have to watch him lose the simple things we all take for granted. He has been blind for some time now, many look at him and swear that he can see because he looks to sound. Oh God what I have missed. You know sometimes I get sad because we don’t have any other children and then it is quickly wiped out by thoughts of Eli. Pros and Cons all the time. I wonder if it is just the grass is greener trying to take my happiness from me. My grass is green and it is because I have Eli. It is true that I mother differently because he is all that I know. I am happy about that. Then I let things seep in and wonder if I don’t prompt more from Eli because I don’t expect things from him. Oh let me tell you the swirling of my mind. I long for children. Then I am happy that I only have Eli. I have plenty of time to miss being a mommy later.

Opps- Back to the kick and play. Even before the dreaded hospital trip I hooked the crib toy to a laundry basket and put it close to him for him to play. He would punch the big red foot button and it would do its thing then he would do it again and again. I would let him play until he fell asleep. After the whole hospital, Leigh’s, Brain damage, two years to live crap we hooked it to his crib. Every night when he would wake up he would push the button. We always left it on. Batteries oh the batteries we used. Then we got smart and got rechargeables. Chad and I would be in bed and we would hear the toy over and over sometimes all night long. It was always welcome in my heart. Then slowly he stopped pushing the big red button and mommy would have to put in on extended play. That way he could hear the same sounds he just didn’t have to work so hard. We finally took it out of his crib when he got his big boy bed. It just makes me sad how one toy can bring me down so quickly. I don’t dwell on what Elijah CAN’T do because he never could do much. He has always been the prince of peace. When you hold him you instantly feel overwhelmed with a feeling of peace and he has been know for putting many to sleep including myself. Ok! Thinking back maybe not always. Those first three months he was so unhappy he cried all the time oh my to remember those days they were a blur. You know my whole life I have wondered where the time went. It seemed to fly by. Now I know where ever second of the last two years have gone. It has been a very long two years some good and some bad but always THANKFUL.

Alright I will go to bed now and leave the rest of my mind to my dreams and those of you that know me KNOW that I have some strange dreams. Yes I am a dreamer, then again I always have been even the days I used to dance on my bed singing Banana rama songs, thinking I would be a famous singer. Really I can’t even sing on key most of the time so now that all seems so funny. So much seems funny anymore.

Did I ever think I would be in the place I am today?
NO…

Would I change anything?
NO…

One day I was at the store and the clerk was talking about the powerball. They all were laughing and sharing what they would do with the money. I knew it would happen and tried to think of a better answer then when the asked me the truth came out. I simply said "IT WOULDN'T MEAN A THING TO ME" They didn't understand, I am glad for that. Wow did they give me a strang look. The whole time in my head were thoughts of a disease for which there is no cure. A horrible disease that drains a child of all they have. So many children that fight every day for one more day. Those poor people if they only knew. We all wonder if knowing is better. Most of the time YES! then sometimes it is nice to dream........Don't get me wrong. I do have my powerball dreams they weren't on my mind that day. I guess you have to play to win and well I don't play.

Sorry to go way way out there but I have to sometimes. Love Ann

>

Tuesday, May 17, 2005 2:57 PM CDT

I wanted to put up a quick update. Yesterday Chris (Eli’s Nurse) came by and seemed worried about the congestion. She said his lungs are full but air still seems to be moving pretty well. He is not on O2 and doesn’t have a fever. We are watching him very closely. He pooped 3times yesterday and already 3times today. When he wants to clear his throat he pushes with his whole body in hopes to get one little snot bubble out. Instead a stink bubble slips out. Wow he sticks. We made a quick trip to Kohl’s in the afternoon and he made one big bomb right there in the return isle. I think he just wanted new clothes. It was funny after I cleaned him up and took a naked bear to the boys section and dressed him right there. Well he couldn’t shop naked and I paid for his outfit. We did get a lot of looks as I know others thought we were stealing. No! Matter of fact he got a few things due to the poop factor. Cute, Cute, CUTE Elijah. At this time he is sound asleep in Jo’s loving arms. She is such a blessing.

Please pray Elijah’s little lungs empty or at least keep moving air and NO fevers……

God Bless
Ann

Sunday, May 15, 2005 5:01 PM CDT

I will start with Mothers day. Well some of you already know what we had going on but most of you do not. Chad had some business meetings and such in Omaha Nebraska. He vowed to never leave Eli again. He held strong on that promise. We planned to spend the week in Omaha visiting family while he worked during the day. We had planned on leaving Saturday morning May 7th. One thing led to another and with no voice and absolutely no motivation nothing was packed until really late. I went to bed at 2am and Chad 4am we left Sunday morning and spent mothers day driving 8hours. It wasn’t all that bad. Then well I was taking my turn driving and noticed the battery was loosing power. A quick stop to check battery connections and back on I-80. Well the connections were not the problem and about an hour from Omaha the truck lost all power. The rest of the story is sort of funny. Before we lost power we put a call in to Grandmom who intern went to the auto store(15mins before closing) and bought and alternator for our truck. We were on I-80 going as fast as we could for as long as we could when an 18 wheeler cut us off. That meant we had to slow down and never regained the speed. That’s ok because he did so right by and exit with a gas station. YAHHHHHH! The weather was great and Chad started to remove the alternator( With JCPenny tools that are always kept in the truck ”Thanks Jenny and Brian”) and had it out within minutes. Grandmom got my Mom and Dave and off they went. I laughed because I got to see my mom and mom in law at the same time. I walked up singing HAPPY MOTHERS DAY TOO YOU!..... I am a nut. If something bad happened well everything was covered so nothing worse happened. I tell you it was a God Thing.

I had all week to do something and even though my allergies were bothering me so I thought I would help Cheryl with her garden in the front of her house. Before I go on I have to say SORRY CHERYL…….. I had a ambitious but do able plan THEN. The rain came and Chad put in his two cents anyway to make a very long story short. The garden was started and never finished, Two 100 foot evergreen trees got cut down and we left on Friday leaving one huge mud pit and only half a boarder built. I felt bad that my plan didn’t go as planed and Cheryl was left with such a mess. My intentions were good but as we all know life never goes as we planned.

We got to see some of our family. We didn’t tell anyone we were coming so they didn’t have much time to plan a visit. That was not planned but necessary as thanksgiving was much too hard on the little man going here and there. We are now home and well Eli and I continue to be one big SNOT factory. He keeps oozing and coughing until his little body is too tired then the suction takes over. Meanwhile mommy has Kleenex all over the floor and coughing, coughing, coughing. My voice is still on the mend which is very welcome to Chad who has to listen to me ramble all the time. The good news is that all our snot is clear and no sign of infection with either of us. I pray it stays that way. We did come home to a wonderfully cleaned house thanks to Jo H and Virginia W. If you know these two fabulous ladies please stop them and give them a hug from us.

Saturday Colleen brought Amber home. She was a very happy dog. Not because she was home but because she was with Colleen. She even jumped back in her car when she got ready to leave thinking that she was going too. Now she is getting used to the plane life with us again. She spent the week as an only child hiking in the mountains and visiting other cute dogs and well Colleen told me that she was only naughty on the first day when she went through their screen door. I hope that was all she did because that was bad enough. She is a people dog. I hope they can forgive us for our dog messing up their door. I BIG Thank you for taking such care of our Amber.

Ok now that I have you all up to speed. This week should be better and quite I hope. The weather has been beautiful out today and if that keeps up maybe Eli and I can kick the yuckies. Then get outside to enjoy the sunshine..

*****I have visited many of our CB friends in the last couple of days and after being gone for a week I was sad to find many of them suffering from some of the same things we are but WORSE... Please visit the members page on Eli's Angels and leave these kids messages letting them know you are thinking and praying for them.*****

Now for Eli’s Angels…. We have many new kids on the member’s page and a few more to add. It is both exciting to meet all the kids and yet sad to know so many have these horrible diseases. I do enjoy sending the gifts out and we have really gained lots of support in the past month. Let’s hope the support continues to grow. We are coming up with lots of Ideas. It is hard to wait to do everything. I guess that is part of being a non-profit. We have only had a couple mail mishaps and one human error. Rheana’s Birthday gift never got to her and I hope she will get it soon. I guess we can’t all be perfect.

Sunday, May 15, 2005 5:01 PM CDT

I will start with Mothers day. Well some of you already know what we had going on but most of you do not. Chad had some business meetings and such in Omaha Nebraska. He vowed to never leave Eli again. He held strong on that promise. We planned to spend the week in Omaha visiting family while he worked during the day. We had planned on leaving Saturday morning May 7th. One thing led to another and with no voice and absolutely no motivation nothing was packed until really late. I went to bed at 2am and Chad 4am we left Sunday morning and spent mothers day driving 8hours. It wasn’t all that bad. Then well I was taking my turn driving and noticed the battery was loosing power. A quick stop to check battery connections and back on I-80. Well the connections were not the problem and about an hour from Omaha the truck lost all power. The rest of the story is sort of funny. Before we lost power we put a call in to Grandmom who intern went to the auto store(15mins before closing) and bought and alternator for our truck. We were on I-80 going as fast as we could for as long as we could when an 18 wheeler cut us off. That meant we had to slow down and never regained the speed. That’s ok because he did so right by and exit with a gas station. YAHHHHHH! The weather was great and Chad started to remove the alternator( With JCPenny tools that are always kept in the truck ”Thanks Jenny and Brian”) and had it out within minutes. Grandmom got my Mom and Dave and off they went. I laughed because I got to see my mom and mom in law at the same time. I walked up singing HAPPY MOTHERS DAY TOO YOU!..... I am a nut. If something bad happened well everything was covered so nothing worse happened. I tell you it was a God Thing.

I had all week to do something and even though my allergies were bothering me so I thought I would help Cheryl with her garden in the front of her house. Before I go on I have to say SORRY CHERYL…….. I had a ambitious but do able plan THEN. The rain came and Chad put in his two cents anyway to make a very long story short. The garden was started and never finished, Two 100 foot evergreen trees got cut down and we left on Friday leaving one huge mud pit and only half a boarder built. I felt bad that my plan didn’t go as planed and Cheryl was left with such a mess. My intentions were good but as we all know life never goes as we planned.

We got to see some of our family. We didn’t tell anyone we were coming so they didn’t have much time to plan a visit. That was not planned but necessary as thanksgiving was much too hard on the little man going here and there. We are now home and well Eli and I continue to be one big SNOT factory. He keeps oozing and coughing until his little body is too tired then the suction takes over. Meanwhile mommy has Kleenex all over the floor and coughing, coughing, coughing. My voice is still on the mend which is very welcome to Chad who has to listen to me ramble all the time. The good news is that all our snot is clear and no sign of infection with either of us. I pray it stays that way. We did come home to a wonderfully cleaned house thanks to Jo H and Virginia W. If you know these two fabulous ladies please stop them and give them a hug from us.

Saturday Colleen brought Amber home. She was a very happy dog. Not because she was home but because she was with Colleen. She even jumped back in her car when she got ready to leave thinking that she was going too. Now she is getting used to the plane life with us again. She spent the week as an only child hiking in the mountains and visiting other cute dogs and well Colleen told me that she was only naughty on the first day when she went through their screen door. I hope that was all she did because that was bad enough. She is a people dog. I hope they can forgive us for our dog messing up their door. I BIG Thank you for taking such care of our Amber.

Ok now that I have you all up to speed. This week should be

Now for Eli’s Angels…. We have many new kids on the member’s page and a few more to add. It is both exciting to meet all the kids and yet sad to know so many have these horrible diseases. I do enjoy sending the gifts out and we have really gained lots of support in the past month. Let’s hope the support continues to grow. We are coming up with lots of Ideas. It is hard to wait to do everything. I guess that is part of being a non-profit. We have only had a couple mail mishaps and one human error. Rheana’s Birthday gift never got to her and I hope she will get it soon. I guess we can’t all be perfect.

Eli’s Angels

Link Eli’s Angels site : http://home.comcast.net/~elis_angels/ To your site or send the link to all you know. Help us get the word out! We want to reach as many children affected with Metabolic and Mitochondrial diseases as we can.

*Need at this time is Greeting cards and Note cards*

Help by donating goods:

Children’s Books
Stuffed toys
Toys
Children’s Music CDs or Cassettes
Children’s DVDs or VHS tapes
Books on Tape or CD and or Read along books
Cards- Birthday, Holiday, Thinking of you and Blank note cards
Stickers
Anything you feel these wonderful children would enjoy!
T-shirts Boys and Girls: All sizes

Help by donating supplies:

Packing Tape
Bubble Packs for mailing
Mailing Labels
Wrapping paper –Birthday and non-specific
Stamps .37cents and postcard stamps .23cents

Gift cards to any retail store will be put to good use buying fun stuff for the kiddos.

Check donations made out to Eli's Angels will be used to purchase postage or the goods and supplies listed above.

Send any and all donations to:
Eli’s Angels
PO BOX 423
Eastlake, Co 80614-0423

You can also do some shopping by way of IGIVE.COM and they are set up to donate to Eli’s Angels. Just Click Here.

***Thank you to all that come here God Bless you***

*Please pray for all the little children that have to fight every day. They are heroes and angels.*

Wednesday, May 11, 2005 1:58 PM CDT

Hello!

I bet some of you have really been worrying about us. Well I am sorry. Eli has been doing very good it is me that has been not so good. With all the weather changes up and down and up again my allergies have gotten the best of me. Last week I felt so bad and yet I was overwhelmed with so much to do. I lost my voice and could only whisper. This week I feel better (Lots of sneezing and blowing of the already raw nose.) but my voice is still trashed. Eli started to get real snotty last night. I sure hope he doesn’t feel like I did.

I can’t give you the whole story of the past week or so but I will give you some highlights. Kristi P came all the way to Colorado for a visit. She stayed with us on Thursday and most of Friday then she was off to stay with some good friend in Lakewood. It was a lot of fun and she has been the only one from the CB page that has come to see Eli. At times it was strange meeting someone for the first time and yet they know everything about your life. Thanks Kristi for the visit. I am so glad you were able to make a stop to see Eli and snuggle with MR snuggle man.

Amber is off spending time with her friends Colleen and Steve. They went fly fishing and well they took Amber too. Oh I know that dog is having a great time. I sure hope Colleen and Steve are able to put up with her. She is a very spoiled Dog…..

I was able to get all the flowers and Rose bushes in, yet I am afraid to plant our one tomato plant.

I have to make this entry short as I have lots to do today. I thought you all worried too much. Thank you all for the wonderful Mothers day wishes. I will have to start my next Journal with my Mothers day.

Eli’s Angels

Link Eli’s Angels site : http://home.comcast.net/~elis_angels/ To your site or send the link to all you know. Help us get the word out! We want to reach as many children affected with Metabolic and Mitochondrial diseases as we can.

*Huge need at this Greeting cards and note cards.*

Help by donating goods:

Children’s Books
Stuffed toys
Toys
Children’s Music CDs or Cassettes
Children’s DVDs or VHS tapes
Books on Tape or CD and or Read along books
Cards- Birthday, Holiday, Thinking of you and Blank note cards
Stickers
Anything you feel these wonderful children would enjoy!
T-shirts Boys and Girls: All sizes

Help by donating supplies:

Packing Tape
Bubble Packs for mailing
Mailing Labels
Wrapping paper –Birthday and non-specific
Stamps .37cents and postcard stamps .23cents

Gift cards to any retail store will be put to good use buying fun stuff for the kiddos.

Check donations made out to Eli's Angels will be used to purchase postage or the goods and supplies listed above.

Send any and all donations to:
Eli’s Angels
PO BOX 423
Eastlake, Co 80614-0423

You can also do some shopping by way of IGIVE.COM and they are set up to donate to Eli’s Angels. Just Click Here.

Thank you to all who have donated. We are putting everything to good use and have some great Idea's for the upcoming months.

***Thank you to all that come here God Bless you***

*Please pray for all the little children that have to fight every day. They are heroes and angels.*

Tuesday, May 3, 2005 11:56 AM CDT

Alright another week has gone by. Really it wasn’t my fault. I just didn’t have much to say. Nothing exciting at all. Eli has been doing fairly well. Always gunky but he has been pooping every few days. Better than eight or nine. I am hoping he will do another one today. The weather stinks. When it comes to Colorado the sun shines 300 days a year even when we have snow. Well lately it is like the old days in Omaha. Cold and drab. The cold rolled in right after I planted Eli’s new RED rose bush. This whole week it lived under a trash can and a few inches of snow. I took the can off yesterday and it looks really good. However we did loose a couple little plants right next to it. I still have plants sitting in my garage from the same day we bought the rose bush. I am wondering if I will ever get to plant them. Today I woke up to the sun creaping in through the window. I had to get up just to see if it was true. YES! The sun. BUT….. I have a very busy day. I think Jo is coming to hold Eli and I have to get lots of stuff done. Then Eli’s CNA Maria is coming in the afternoon. We are going to attempt the bath thing again. Boy my 50lbr sure puts people on their toes. I think that kid grows an inch a day. It is not only that he is 50lbs he is very long too.

Well I hope to not make you all wait so long. I will try to keep you better informed. Really there isn’t much to say right now and that isn’t bad.

Ann

Sunday, April 24, 2005

I have been very bad about the updates lately. Sorry yet again. With the weather changing so rapidly around here we are all riding with the drippy noses one day and dry cracked noses the next. We have also been trying to take advantage on nice days when we can. Killing weeds and doing a few things around the yard and in the little gardens. We don’t want to go overboard our neighbors might have a problem if we made our yard look too nice. Amber made sure of that with her brown spots here and there and well her litter box in the back yard.

Eli has had some ups and down. Just like him! The congestion comes and goes bad one day and not so bad the next. Same thing with his breathing, slow at time and fast at others. He went almost eight days without pooping and then well he got some out. Thanks Ginny! He pooped for here then waited until mommy and Eli were out then pooped again. Luckily we had to wait for the lawnmower blade to get sharpen. The man beat me done. I was still cleaning poop when he came out with the blade. TIMING. That’s Ok we still like the poop. That was Friday. Saturday was a work outside day. We even went to the green house and got a special rose bush for Eli’s little garden. I had to move his little evergreen tree. WAY too much sun, poor thing. Now it is in mommy’s garden and I hope it comes back. Now in it’s place is the special rose bush that will love all that sun. I already have a few throne injuries. I look like we have a cat, Nope not in our house.

Today was a really big day. We drove up to Lily’s birthday party. Eli dressed up special. You know he had to look handsome for all the girls. Daddy slicked his hair and off we went. Eli and I drove up to see the Lily bug. It was a nice drive there Elijah was awake the whole way. We got to see Lily’s whole family (Good people) and a few friends. Lily got a trampoline for her birthday. I thought what the heck; Eli had never been on one. We got in and when everyone jumped up mommy and Eli went. At times he loved it and other times I think he was trying to place all the voices he kept hearing. Overall it was a hit. It even got more gunk out from all the bouncing. Lily sure loves her present. She was all smiles. It was time to do inside stuff and well Eli was done. He had his feeding and took whatever nap he could get here and there peeking every so often. Eli wasn’t the only one. Lily was tired too. All the fun and excitement sure tuckered the two year olds out. The drive home was not so nice. All the way down I-25 with heavy rain. That’s Ok daddy got us good tires. NO sliding at all. Silly Eli he doesn’t like to sleep while driving and waited until we made it home to finish his nap. Then nap he did, he woke of for one maybe two seconds to push yet another poop out. I took advantage of it and gave him a quick bath. His little eyes were bloodshot. I gave him some of my allergy drops and wow what a difference. He looked so happy. I think he needed the freshening up. He sure looked and smelled better. A few minutes rocking with mommy and back to sleep. He didn’t even blink through the meds or the shoulder ride up to bed. Now he is sleeping peacefully. It is still raining out. The grass will love it. I hope it is somewhat nice out tomorrow. I need a few minitues outside everyday or I go nuts. I have mentioned it before but I have been known to check the mail box several times a day just to get out if even for a moment or two.

Monday, April 18, 2005

Elijah had a much better day. Still gunky but not so bad. He really hasn't struggled until I put him in his own bed. Now I have been going in to suction every 15min. Maybe once he gets it out he will sleep well. After last night's Update. I went in his room unhooked his pump, Did CPT, rocked him, suctioned, and did some strecthing technics. This helped clear him up and I put him back in bed. Then went to bed myself around 2:45. I had planned on going to bed early tonight but Eli is really coughing. Funny how once you pick him up his stops. I know I know it is due to the change to upright but it is more fun to think he does it just to be held....God Bless Ann

Sunday, April 17, 2005 Sunday night Update
Ok today was good bad and ugly. It started terrible. I went in Eli’s Room at 6am for morning meds and show a Eli that didn’t look like he was going to make it long. I was scared. Soooooo… scared. Every breath he took his chest would cave in. His color was fine(his perfect rosy color) no signs that his O2 was low. I suctioned him thinking that I hadn’t anything else to try. He gave me so much think goop. Wow! His chest was still sinking in with every breath. Time stood still as I thought about what was happening. Chad was downstairs. I called for him to come up to Eli’s room. The two of us were confused. Eli likes to though these cures at us. We did the only think parent could do. Chad picked him up and took him to our bed and gave him O2 just in case. On Chad’s chest he started to finally let us in on what the problem was. He coughed and gagged, with a horrible grimace. I got the suction machine got as much out as we could then it was CPT and suction for the next couple of hours. He was all gunked up but it was clogged and he couldn’t cough it out. We couldn’t even get the suction catheter into his right nostril. He doesn’t like it anyway! Chad finally got through only to get a little. Well really long story short the morning was hell and the three of us stayed in our bedroom until 11am. Knowing that wasn’t helping I was TOLD we had to get up and move around and well HE was right. Eli struggled at times today and we tried to take him outside to enjoy the beautiful day. Each time we would try two or three minutes later he would have a coughing bout. There was once I think he made 30min while mommy did work in the garden and Daddy killed weeds. Chad held him a lot today then tonight I tried a warm bath and CPT then cuddle with mommy. We have had both the portable suction machine and the heavy duty one going round the clock. I put him to bed a little while ago. He was so tired he didn’t even open his eyes. I am trying some different positions in order to help him drain and not get as stuffed up. We also increased he water intake for now to think out the mucus. He is back to breathing the way he was on Saturday. Everything so far has come up clear, no fever or discomfort. WHAT DO YOU DO! I thank God he is breathing and for every breath he takes. Now he is sleeping peacefully and I am so tired I have to sleep too. I will pray with him before I go to bed and do what I do often I give him to God and trust that he will be taken care of whether it be here on earth or in heaven.

Sorry to have a not so good update I did leave the ugly out by mistake. I was the ugly. Because I spent all morning with Elijah then the after noon in the Garden Why shower? I did shower before I gave Eli his bath so at least I did take one. Now I am not such a looser. I will try to write a quick update Monday afternoon after Chris and Cindy have been here. Great now I am coughing. Maybe it is just the springtime change getting us all whacked out. YUCK!!!!!

Saturday, April 16, 2005
Hello everybody! I sure hope the weekend is going great. Friday Eli and I drove up north to meet up with Lily and her mom Sarah. It was so much fun. I think I lost track of what mind I had left. I was too wacky. Poor Sarah. She probably thinks that I am nuts. Really, It is my very little human contact that is to blame. Once I got going there was no stopping it was psycho loose at a mall. Truly, my Sister and my buddy Jeanne have seen this side of me. Yes! it has happened before. I am a little bit of a goof. I almost feel sorry for those around me. They have to put up with my constant babble and my speak before I think talking. I sure get myself into trouble sometimes. To sum it all up and my sister could have told you all this I AM A BRAT….. It took me a long time to accept that but here it is. I know now and well it is just how I am. Oh well enough of my sort of apology to Sarah. I am so thankful that you invited me up. I REALLY NEEDED IT and we can’t wait to come to Lily’s birthday party.

Our weekend is going pretty good. We took a real easy morning then had an outing for new flowers for the gardens. It was nice enough when we got home to even get started. Chad and Eli soaked up the sun while I soaked my hands in dirt. Perfect afternoon, I say…We are going to do the same tomorrow. Chad of course has to work but we are hoping it won’t be for too long. Then maybe he can come and play in the dirt with Eli and me.

Elijah’s Breathing is still rapid and shallow. He has been that way for a couple of weeks. He is still at 952 which is pretty good. Low for him. Even when he has gunk he is at 97-100. Funny because most normal adults test lower than that. Still having a little trouble with urine. He holds it until he can’t anymore and he fills his diaper with one shot. Sometimes I have to prompt him. His nurse Chris had a talk with Eli’s Pediatrician and it didn’t come as a surprise due to the damage in Eli’s Brain. Which then brings something up in my mind. My little prince had horrible brain damage in his 6month of Age MRI. He is doing pretty well for all the damage that occurred so young. It is true that I have seen him loose much of what he could do and never got to see him do many other things but my little blue eyed wonder is hanging in there. Please pray that his breathing will somehow get back to his normal. If not this is more degeneration and breathing is the most important. I don’t have to tell you all where it will lead.

Wednesday, April 13, 2005 11:32 AM CDT

Elijah has had a pretty good week. His breathing is a little off. Faster than normal and when he falls asleep it takes him longer to get to a good pattern. No telling if it is anything yet. We are waiting for a poop again. I sure hope today. I can’t think of anything else right now. I might be back on later for more.

Later April 14. 2005
Ok Eli pooped Wednesday after noon and then again today. A really good one today. I had to change my clothes his and pretty much hose everything down afterwards. God Blessed us with the poop Yah. I pray all our little friends that have trouble with poop have the same kind of luck.

Besides poop we got out to do some garding and for a nice long walk today. Eli is out for the count he has been sleeping ever since his dinner.

Sunday, April 10, 2005 9:37 PM CDT

I know many of you have watched the national news and have seen the snow. Yes Snow. We are covered. They predicted it but you just never can believe them. I got up at something like 3am and looked outside. It was blowing in. At 6am Chad said it was just starting to cover the ground. I looked out at about 7am and it looked like a blizzard. I unhooked Eli from his pump and went downstairs to check on daddy. Daddy was all snuggled up in the love Sac and Eli and I took the couch. The news did none stop coverage. Funny stuff, people from Colorado going crazy about the SNOW. The day went on and so did the blowing snow. We even did webcam with family back in Omaha to show. I pointed the camera out the window at Chad digging out our driveway and my nephew(in Omaha) was out mowing. The power of technology. When I first moved to Colorado I thought it snowed all the time. I wasn’t all the excited about the winters. Now I know it is a crock. We usually have the best weather. Although you can’t tell that by the drifts of snow in our yard or all the way up to our front door. Oh and it is still snowing….

Lily’s Birthday party was postponed due to a few feet of new snow. It will be in a couple of weeks. I sure hope it goes as planned this time.

It is one of those things you just laugh at. Well I just wanted to update and let you all know that we are warm and ok. God Bless.

Friday, April 8, 2005 2:30 PM CDT

This week has been pretty good. Chad is still really busy at work but taking the time to do the snuggling with Eli. Me, I have been up and down. My mind is mush. Eli had the strange day on Monday but was recovered the next day. Still gunky I don’t think that will ever change. He can’t swallow at all so the gunk has to go somewhere. Tuesday as I said, the wind was so bad it blew stuff all over, shingles off houses, knocked over some old buildings and even tore up the convention center downtown. Denver is so spread out the North got wind, West and south got snow and east got rain. We were lucky rain and wind no snow. Wednesday was normal no issues. Thursday was wonderful. It was so warm I put shorts on Eli. We went outside for a really long walk always with Amber tagging along. She found some nice boys down at the park. They asked me how come she doesn’t chase them very far. I said honey she is a lazy dog. She is inside all the time and just doesn’t know what to do with little boys. So they sat on the park bench and pet her as long as they could. She would do that all day if she could. Eli loved hearing all the kid’s voices at the park. The three little boys asked me a few questions about Eli but never seemed rude about it either. It was nice. Then we finished our walk. The sun shining brightly on Eli’s little fingers. I know he enjoyed the warmth of the sun.Thursday night was bible study. I always enjoy having the warmth of such wonderful sprits around me.

Lily’s Birthday party is this Sunday and Eli was invited. We do plan on going. Please pray that all the kids are feeling healthy and the party goes well.

God Bless and have a wonderful weekend.

Friday, April 8, 2005 2:30 PM CDT

Tuesday, April 5, 2005 2:15 PM CDT

I know that many of you have expressed your worry. I am sorry I have not been able to update. Chad’s parents were here and gone and then my parents came in this past weekend. Chad has been working really crazy hours and the time that he does have he has just been exhausted. All of this makes me tired and no time to update. Eli is getting all the grand-loving he deserves. I have been busy doing all kinds of stuff. My mom and Dave helped me with Eli and planting some new things in the yard since we had some nice weather Saturday and Sunday. Yesterday and today is a different story. The wind is so bad all the trash cans are blown over and I can hear it banging on the windows. I have to go out with Eli today; I really wish I didn’t have to. It is never fun to maneuver his 48 lbs trying to keep him covered and warm, Then to get him into the truck without the door banging us. Yuck.

Ok on to the important stuff. ELI’S HEALTH:

He has had good days and Bad days in the last week. I think some is progression and some is the changing weather. Saturday I had to do lots of suction over and over. I even laid on his floor for awhile until he was sleeping well. Sunday was a wonderful day out but Daddy had to work so we just stayed in. We did venture to Wal-Mart for some stuff. Monday the congestion seemed much better he was so unhappy. He kept giving me a look. I still don’t know what was wrong. Cindy came at 11: for him massage and he gave her the same look. She said during her visit that his tummy might be a little upset. He is pooping ok. So I hope it is not a urinary infection. He is still fighting the yeast. I am trying to help him. I just can’t seem to do enough for him. Chris came to check him out later in the day and he seemed a bit better but still not right. All is vitals were normal. No fever! Last night he was gunky but not bad. He wanted to be held all day. I did just that. I had to answer the door for the UPS guy and he said it took you so long I didn’t know if you were home. I had a big huge wet spot on my shirt from little bear or BEAR JUICE as Cheryl calls it. I am sure he wondered what I was doing. He would have felt bad if I told him I was snuggling with my sweet little boy that needed it and it took me so long because he is so heavy. He seems much better today. We have to leave soon and I am sure that he will have a big poop 5mins before we have to leave. He likes to do that. You know you wait for poop all week and here it comes as you walk out the door. I really don’t care as long as he gets to poop.

Thank you all for worrying about us. I feel your cares upon us. I may not update but I check the guestbook every chance I get. The messages mean a great deal to me.

God Bless

Monday, March 28, 2005 1:07 PM CST

Easter weekend was great! Elijah is still gunky but not sick. He had a couple of bad seizures but not too many. Papa and Grandmom came to visit Friday thru Sunday. They left right after church. Eli was living it up being passed from one person to another. Snuggleville. He is mister snuggly. He even growled at his daddy when he tried to lay him down after church. Nope daddy had to keep on snuggling. Silly Elijah. All and all it was a really good visit. Thank you God. Elijah will be getting more visitors on Wednesday when Papa(Dave, my step dad) and Grandma(Karen, my mom)come to visit for the weekend.

Me I have been ok. All the talk of the funeral planning has my mind spacing often. Easter weekend even! I hope we can do it soon and then not have to think about it until the time comes. Tears well up in my eyes when I even think of seeing my precious son (lifeless) at the front of the church. So many emotions. I always cry when I know that I will have to come home to his empty bedroom and pack away everything that was his life. I guess I can be thankful that we are able to start planning, that we know ahead. Tragedies seem so much worse when you are grieving, planning and still in shock.

Now that Eli’s Angels is all official and stuff we are all on the move. Everyone we know is getting involved in some way or another. I have a neighbor that helps by bringing Soda cans by. He leaves them on the porch. I always smile when I go out and see them. I never know when he comes it is just fun to know he and his family are helping out our cause. We have friends that live far away and can’t really donate cans instead they are finding other ways to get involved. Spreading the word to people they know. Papa has set up a donation jar at his office. Many others have e-mailed me to see how to help. What a way for people all over this country to come together and help such wonderful children. As Chad has said “Thank you to all that gave Eli’s Angels its Wings” I smile because it is the kids that win most of all. And everyone involved gets the gift of helping such special kids.

Update 2:30 I got on to add photos Then Eli and I are going for a walk in our 73degree weather.

Thursday, March 24, 2005 5:23 PM CST

Oh Boy a big Weekend coming up. Happy Easter everyone.

Elijah got his last RSV Shot today. He did really well. Overall he is doing ok. The seizures haven’t been increased in the last few days. ALWAYS GOOD! One of the issues he is having today and everyday but it seems much worse today. He is so Gunky. If I hold him on my shoulder it helps him drain. The problem is I can’t hold him all day. I have to let him cough it out. It is a awful sound. He struggles so much. Maybe it is just due to the weather changes. Colorado is just crazy.

He has a really cute little Easter outfit. I can’t wait to show you all. I will take photos. I may not always be good at posting the photos but we take many.

On a rather sad note as it is our reality we are starting do the funeral planning. I know it will be the best for all of us to get this done. We tried once before and didn’t get very far. I feel now is the time we must finish. So many things have to be decided on and Chad and I want to be in the frame of mind to make good choices and not because we have to. We want Elijah’s service to reflect his life and be wonderful. Sometimes it is so hard to think that my Eli will be gone so long before I will. We just never know what is in the plans.

**Oh Wow! I just looked outside and the snow is blowing around like crazy. Weird weather again! I did gardening the other day and now it is snowing. Oh well. I wonder how much we will get? Please pray Dan and Cheryl (Papa & Grandmom) have a save trip out tonight. They are driving and the road they bring is nothing but dangerous when it is icy.

I have so much to tell you guys and can’t think of any of it. I know my mind has turned to mush. Well maybe next update. I still have to add the photos of Eli and Lily. I will do so soon I hope. Sorry this update is short. We have bible study at our house tonight and I have to clean up a little. You know make sure we don’t appear like slobs.

Monday, March 21, 2005

It has almost been a week since my last update. Normal stuff going on around here. Elijah has been real stable. Maybe a little increase in seizure ( stare, absent and the never welcome laughing ones) activity. His saliva is remaining about the same. I am trying to only suction him really deep before bed. That way he can sleep better. During the day I hold him upright on my shoulder and that seems to keep him clear for a while. Of course it also means that I have to change shirts a lot. I love it when strangers come, it always nice to answer the doorbell with a huge wet snot/spit mark on my shirt. Oh well that’s life. I would rather have it on me then in my little guy. He went another 6 days and no poop and then Saturday he gave a really good one. Then to my surprise another good one today. What a good boy I have. I didn’t have to beat him up this week to get a poop. YAH!!!! Awesome.

Thursday our little friend Lily and her mommy Sarah came to see Eli and I. We were going to meet somewhere but they came to our house instead. It was great. Lily is too sweet she liked Eli’s hair and did everything she could to touch him. Amber (our dog) licked oh I mean liked Lily. Every chance she got she gave her a big doggy smooch. DOGS! Always in the action. Well we had a great time and Lily even got to try out Eli’s swing that he got for his Birthday. She loved it. Lily even invited Eli to her birthday party. Wow! His second birthday party ever. We are planning to go. What a big boy I have.

Next time Sarah we will make the drive. Thanks so much for coming for a visit Eli and I really needed it. I will post the photos after I download them. Sorry I bad.

This weekend was really nice. Saturday the weather was beautiful. I took advantage and did some work in Eli’s little garden, getting it ready for spring. I can’t believe most of his Annuals are sprouting. I guess we won’t have to buy much. While we were out our old neighbor John strolled up. Wow! It was a blessing to seem him walking. Just after Elijah was diagnosed John was in a horrible accident. The man that hit him died. John and his two little kids were spared. Thank God that the children walked away with just seatbelt burns. John on the other hand did not. He was in really bad shape and spent many months in the hospital and has since undergone 13 surgeries. He still has a long way to go and will have many lasting affects of a moment in time. I just couldn’t believe it was him WALKING up to our house. He is moving back to this area and I will be nice to see him again.

Sunday was so much colder. The morning was nice then the clouds rolled in and rain came soon after. I miss going to church. I know that we will be going this Sunday. I just pray that we will be able to go more often. I need it and miss all the wonderful spirits there. On a different note due to not going to church Eli was passed from Mommy to Daddy for snuggles most of the day. Each one taking a turn until we had to get up then handing him to the other one.

My Mom and Step dad are planning a trip soon. I do know that Chad’s parents are coming Friday. That will be fun….This week should be same ol same ol.

Tuesday, March 15, 2005

This week is kind of strange. Eli is still having many stare or absent seizures and the gunky stuff in his throat comes and goes. Sometimes it gets so bad he pushes and stops breathing because he wants to cough. Then there are the times he sneezes and up it come. Every night for the last week or so I have had to spend sometime doing suction. I consider our selves lucky that Eli hasn’t been on O2 or in need of much suction in the last couple of months. Really this year has gone pretty well until now. I think that is wonderful. It could have been so much worse as I am sure it will become. For now I will enjoy ever moment I have with him.

Monday I woke up with a horrible cramp in my neck that still hurts(not as bad) today. I couldn’t turn my head to the right at all without excruciating pain. Eli took it easy however he was awake for Chris and for Cindy. Cindy was nice enough to take a few minutes and take a try at my neck. She made it feel better and now it just has to do the rest on its own. The rest of Monday was a blur. I know that I got my bear and sat (napped) in the recliner for a long time.

Today started off much of the same. Eli and I snuggled all morning. Wow! I wanted to get up and do so many things today. Elijah was so peaceful I didn’t want to disturb him and well he had already slobbered my shirt. It was also a day for Marie to come. She is the new CNA coming once a week to help with Eli. I finally admitted I can’t do it all. Yes! It was hard and I now understand that I need help. Until now it has mainly been just me and Elijah. That is where Marie comes in. I am showing her how I do things and hopefully soon she can do them without my help. I don’t know what I will do with myself. I know I will figure it out. My Jo was coming once a week. Right now she is recovering from a recent surgery. Virginia has been coming on Friday’s to hold Eli and last week she brought her husband Roy. I ran to sell cans and came home to Roy still holding Eli. He said he wasn’t giving him up. I think Virginia only got to hold him for 2 or 3 min at the most. I thank God that these people are all in my life. I don’t even think of where I would be without them.

Eli’s Angels – Update
I told you all about the IRS paperwork and now it is time to do state stuff. I have filled out all the new paperwork and the hope is that I can run downtown tomorrow and take care of the forms and applications. We are starting to get the April package ready for the kiddos. It will go out the 1st week in April. Ohhhhh What fun.

Sunday, March 13, 2005 9:56 PM CST

This has been a pretty quiet week. Eli went 8days without a poop. On the 8day (Wednesday) it was Miralax, massage and then suppository. Viola! Poop. I felt bad the poor little man had to go that long. He didn’t seem to be in pain or discomfort until the last day. The last few days he has had the poops ok. Saturday and then again today (a really big one) he seems to be back on track. His seizures are still continuing to get stronger. He is having many stare or absent seizures and a few laughing and since he can’t laugh he just makes a loud sound. Today he is fighting all the gunky stuff yet again. I am sure all that gunky stuff is due to our extreme weather changes. I tell you it is really nuts around here. One day 70 degrees the next snow. Now we have the ground cover in (much needed) snow and I just bet after the sun comes up tomorrow all of it will be gone.

Saturday Chad and I decided to go out for dinner. I can’t remember the last time we did that and now I know why we don’t. Olive Garden is close to our house and seems to be a good open place to take Eli. I guess that would be right just not on Saturday night. We waited for over an hour to sit and when we decided to give it a couple of more minutes we had a table. Eli did really well. Of course I hate it when people run into his kid kart and play with the things we have attached to it. I realize that children are curious and I don’t mind as long as they don’t touch. It is a germ thing! That is how we keep our little man healthy. Anyway after we got out table all was well. The food was great and Eli even took a nap. Then it was off to Barnes and Noble for Bear books. Eli got a couple of books and one read along CD. Eli got a couple for his birthday and they are kind of fun. By the time we finished the snow was falling hard. Of to home it was. I don’t even know what we did all night. We stayed up really late and laid around all day today. I think it was a much needed weekend. A family weekend.

Tuesday, March 8, 2005 8:53 PM CST

Hummm…where to start. Nothing exciting to report or maybe my brain is so fried that nothing seems exciting. I gave you all an update on Saturday I think? Never mind. We always have something going on.

Oh wait we have had some pretty cool stuff going on. Daddy finished a little bookshelf he built for Elijah and it is in his room. It looks great. We put all his books on it, well almost all his books. Daddy did such a good job is matches Bear’s bed and dresser. Wow! That is really cool.

Elijah has been doing well. Still with those saliva problems and then the yuckies (seizures) are coming back to full strength again. We may have to play with the meds yet again to compensate. We are so thankful that we have enjoyed the last couple of months with only a few seizures a day. Tonight he is coughing quite a bit. I think he needs a little CPT (beating) and then he should feel better.

Monday was the best day. Chris tried to beat Cindy here but NO! She couldn’t. Cindy comes at 11: and Chris tries to check on him before that. We all had a good laugh and joked that Chris could have got a ticket. I guess you had to be here. After that Eli and Mommy did some needed snuggle time. I debated going for a walk yesterday was so beautiful and warm. Instead I thought we would wash the truck (oh so dirty) run by the PO Box and then to Kohl’s to get Elijah a few things with his Birthday money. The PO Box had a piece of GOLD in it. Not really, close though! WE GOT THE PAPERWORK FOR ELI’S ANGELS. WE ARE OFFICIAL. A 501 (C) (3) Public Charity. Now we can really pump up the program. Wow! Soooo cool. Well it was off to the car wash. I broke it and had to wait for the attendant to come out. I told her I felt really blonde. She told me it was the washes problem nothing I did. I am never sure anymore, that kind of stuff always happens to me. I try to take it in stride and sometimes it bounces right off. Then there are the times it doesn’t. Enough with that Bear and I had shopping to do. Little boy’s clothes in his size look awful. He is a handsome boy. They should have the HANDSOME boy section. You know, Where they keep all the cute things. I did find him some cute things among the horrible stuff. He has a basketball and baseball outfit complete with the long silky shorts. We also found a sports Scooby doo outfit that will look really great on him. If you know me I love to just look around. Once I am shopping I could look around all do. We strolled by the hat section and yes I managed to find the little guy some cool hats for spring time. One of them is kind of like the old hobo style and he makes you cry when he has it on. His blues just peek out from under the bill oh my you guys would love it.

On a better note. Eli’s Angels is going strong we are adding 5 more children to the website tonight. Actually Chad it doing it now. Through all this crap we deal with everyday I am thankful I have the privilege to work on something so wonderful. God has blessed me with Eli as well as his Angels. I know our program can’t change the outcome. I only hope something good comes form it. I already know the good it does for my heart. Eli will leave such good things behind. Help us spread the word. Tell everyone about Eli's Angels. Let's make it a very successful program.

Visit Eli's Angels website and click on the Members Page to see the new kiddos we added. Corey, Carsen, Caden, Rheana, and Patrick....I must worn you all they are cuties.

Friday night, March 4, 2005

Tuesday Chad stayed home from work. He wasn’t feeling the greatest. I was dragging. Also my Jo that comes on Tuesday’s had surgery. I found out that it was done at a hospital real close to us so I stopped in to say hello. My Jo has been a blessing and I don’t know what to do without her. Pray she makes a full recovery and feels much better soon. Wednesday electronics at our house were going nuts. Chad had problems with everything. That is the day he works from home. He usually is on the phone a good part of the day. Thank God for Cell phones. Our phone went out and the computer went nuts. Oh and during one of his calls I told him to go to the basement. I took some boxes down and there was water all over the floor. Yep! Water…. Those of you that have been to our house know that our water heater is trying to die. It still has life left in it if only a little. It has a slow leak that turned into a poor. Chad got it stopped and I cleaned it up so he could finish his call. The water heater will live until another day. Poor Chad I think he was on the edge. He got better as the night went on. Less stress I think. The best thing that happed was that Eli not only pooped he pooped twice. Two awesome poops. Good Job!!!!

Eli is coughing a bit and I think it is due to one nasty molar causing some saliva. I took a look in his mouth again today and one of his new back molars is HUGE. Nowonder it hurts. It must have been causing him some discomfort because he let me in to rub the inside of his mouth without biting me. That is amazing. Normally he clams down as soon as he feels a finger. You know human chew toys. I have noticed some more sizure activity. I hope it isn't going to stick around. His meds are almost maxed now and he already sleeps so much.

Thursday was pretty quiet. Chris Eli’s nurse came and did the normal check him out stuff. I loved the day we had. It seems we snuggled for a couple hours here and a couple of hours there. It is hard to stay in one spot long enough to please him. He always wants to be held. Even on nights I have had plenty of sleep he is so peaceful he makes me want to nap. Dishes can wait Eli wants to snuggle. I think I have taken some what of a sabbatical from the household chores. I did so much laundry the last few days. Now I have to put it all away. The last couple of days I have been doing a lot and it feels good. I really hate being LAZY. I love being with Eli it is just sometimes I can feel the pounds adding up. I think I am finding my almost spring motivation. I am getting back into the grove of things. We don’t have anything planned this weekend so far. I know Chad is going to build Eli a bookshelf for his room. We had to lower his JR bed to make it easier for me to get him in and out. The bookshelf that was under it had to be removed so the bed could come down. Chad is very talented when it comes to building things if only he can find the patience. You know wood sometimes fights back. I am sure it will look great. I am so glad we were able to bring his bed down. It was killing me at night. Diaper changes and getting his early morning meds into his pump were becoming harder and harder. Let alone the 2am crash I took head first off it one night a couple of months back. I have been enjoying going into his room and sitting on his bed. No ladder involved. AWESOME!!! Mornings are the best. I am half awake and when I get him up I have to be real careful when I pick his hefty 45lbs up the way we had the bed. Now it is a piece of cake. Well maybe not that easy. I do what I can.

Eli’s Angels News- Our official non-profit paperwork is on the way. I don’t know if you any of you have seen a commercial where the lady checks the mailbox about 20times a day. Lately I am that lady. SAD but true. I talked with the IRS this week and he said they had some delays and it should be coming any day. Any day to me means to check the box all the time. I like to think that is my exercise. Then I wonder how sad I must look to my neighbors. They really should be used to my crazy ways by now. It has been almost 7years in this house. Oh my God!!! Life…. I must be getting old. The last few years seems like a lifetime. Anyway it is on the way and I am too excited. We have also signed up 5 more kids in the last two days. Wow!! How cool is that. April will be a great month for Eli’s Angels.

By the way Jeanne I did take a Ziploc with us to the salon….. I laughed when I read you comment and I forgot to e-mail you right after word. You do know me well. I pray all is well with you and you bundle.

Another little buddy Sam left this earth on March 3 to live among the angels in Heaven.
Sam
Please pray for his family…

Monday, February 28, 2005

I know, I know I have been toooooo Bad. Normally I update a couple of times a week. I can’t blame anyone. The truth is most of my updates are done right after I put Eli down for the night. That way I can make sure he is sleeping well before I turn in. Well lately he has been OUT right after I put him down. Taking advantage of this new thing I have been “trying” to go to bed early. I have a bad habit of “Farting around” as I call it. I find anything and everything to do right before bed. You would think I am 4 years old. For some reason they say my behavior could have something to do with prolonged stress. I just don’t understand that. Hummmmmm? Stress…. Me….

I don’t have much of an update about Eli. I do feel like we are going through the calm before the storm. He has been stable for a few weeks now. I feel there is a decline coming. I try not to dwell in that though and I feel that is healthy. Eli is being funny about the congestion. Eli tightens his legs and holds his breath to try and force a cough out. He will struggle and struggle sometimes for awhile before he sneezes, coughs or drools a little gunk out. Then he sound completely clear like it never happened. Repeat-Repeat-Repeat. Some days he is clear and others he is gunky. I just look to God and am thankful he can still clear it, even if it takes awhile.

I have so much to be thankful for and sometimes my Thank you’s are a little late or missed. I want each of you to know that we are appreciative of all the help and support we have been shown.

To all who leave messages in our Guest book. THANK YOU! I read each and every message. I find encouragement in all the words left. Many of you go out of your way to bless my family.

I made a list of all those who sent Eli birthday greetings. I was going to thank you all by name right here but thought maybe some don’t want their names posted. Know that we sat down with Eli and read each card to him. Thank you so very much.

I want to thank a very special group of people. I used to work with them at Integris Metals. I worked until the Friday before Eli was born (Saturday). They supported me then and continue to support me now. My job wasn’t all grace and complicated algorithms. I did it because I was surrounded by a huge circle of wonderful people. I learned and continue to learn from them. Some good and some bad. They will always live in my heart. I remember each one for the corky things they do that make them unique. I am a talker and would talk to you guys all day just to explain how great these people are. Well maybe I will share a couple of stories. I was 7 months pregnant with Eli and after a day of running around we came home to a porch full of baby things. The cards were signed from famous people such as Tom Cruise and of course Santa Clause. It was Fred- A quite guy that sits in the back and minds his own business. I was surprised by the gift and truly overwhelmed with his humor. I never knew how much I could look to them for help after Eli was born since I really didn’t work there anymore. Then it was 4am and Eli was just admitted to Children’s hospital after having many tests come back abnormal including the Head CT. Scared and worried Chad and I were trying to make arrangements to pick up Cheryl from the Airport. Neither of us could leave the hospital nor were we in the frame of mind to drive. I rang Terry. The next morning he got the message and knew it was BAD. I talked to him and he offered to go and pick Cheryl up at the airport. He not only picked her up, he paid for parking and carried her bags up to Eli’s room. Not to embarrass him. Oh heck why not. He calls me every week or so to see how we are doing. Well on to the real reason for this long story about my work. Saturday after Eli’s Birthday Dawn came by and brought with her a few things they all contributed. She brought Jackie’s custom made BIG card. Jackie only makes BIG cards for special occasions. Everyone that was there signed it and then such a wonderful gift that there are no words. Each person donated to the Elijah’s Fund for our lift. I was speechless. It doesn’t happen often but I was. How grateful I am to know them. How grateful I am for their gifts. God has really blesses us in so many ways.

Monday-Monday
Today I had run a few errands. Chad watched Eli and meet with Chris. I wasn’t gone for long and was back in time for Cindy. Eli missed her last week and he showed her by sleeping through most of his massage. After that it was a boring day. I hope I am not getting sick. I feel hot and I laid on the floor for almost an hour. Sounds crazy but it felt good. Later I crawled in bed and took a nap with Eli for almost an hour. That is why you didn’t get an update in the morning. Tonight Chad feels the same. You just never know in this house. We don’t get sick often. Of course we have to deal with Eli’s everyday disease stuff but to just be sick we aren’t. Or at least I hope we aren’t. We kept pretty busy last weekend and I hope it is just that our bucket is filled.

Monday, February 21, 2005

Ok so I am bad. It seems the longer I go without updating the harder it is. We have been busy and tired around here. Let me start out by putting you all at ease. Eli had a wonderful birthday. He has been doing well. No change in health. The gunky stuff comes and goes. We are real happy it hasn’t stuck around.

Here goes. Our conflict for the week was what to do about the mandatory conference Chad had to attend Downtown or for the locals in the DTC. It is and hour or more drive each way. We learned a few weeks ago that it was to be held the 15th through the 18th. It is something that Chad had been waiting to do. He wasn’t expecting it to be on such an important day. Well our philosophy was that if daddy was going to miss most of Eli’s birthday we would embrace it. Instead of making daddy do the long drive everyday we went to a hotel close to where the conference was held. That way we could do some fun stuff and Chad wouldn’t miss a thing. He left early Morning for his conference and we left much later to check in at the hotel. By the time we were settled(Eli pooped) and rested, daddy was on his way. After dinner and birthday ice cream cake, we ventured into the pool. We were really excited! You see Eli has never been in a big pool. We found a wetsuit with flotation pockets. At the time we didn’t even know how it would work. It was the best $5.00 ever spent. Elijah was able to float on his own. It was a blast. Grandmom and Papa were there too. I can’t think of a better way to spend such a wonderful day. We wrapped it up with a quick dip in the hot tube which Eli just loved. He had the best nights rest. Perfect ending to a perfect day!

Wednesday- As with all hotels the air was dry. We all had dry skin and sore noses. I was worried at how the stimulation would affect his seizures or the dry air in his throat. Elijah was just fine. The seizures were no worse than normal and the air didn’t seem to have a big affect on him. Gods Blessing indeed. Eli and mommy spent the day with Grandmom and papa at the Part Meadows Mall. It was too expensive for our taste we left with only a few things. Eli showed Nordstrom’s what he thought of their bathroom or maybe telling mommy what he thought of shopping. While I was tossing the old diaper Eli took the opportunity to show us his BOY POWER. I heard a rainfall and by the time I got something to cover the sprinkler, he had soaked everything in site mostly his stuff. Everything was wet. I guess he had held it for a long time. Off to the hotel to warm up and rest before it was time to swim again. The second night we decided not to do the wetsuit and Eli hated that Idea the pool was too cold for him and he grunted at Dad. Off to the hot tub we went and that night was much better. It was not as hot so we stayed in for longer.

Thursday- Brace yourselves this is a big one.
We packed up from the hotel headed home, unloaded and gave Eli a bath. After all he had to be clean for his first haircut. YES! I did say very first haircut. Debi came in on her day off just to be the one to cut Eli’s beautiful locks. I don’t think she understood that she was the only one that would be allowed to cut such an angel’s hair. It was awesome. His hair is much darker now that the baby blonde is gone. We love it. He looks like such a little boy. Let me tell you his hair was driving me crazy it was so long that I gave up. He looked like young Einstein.

Friday- Grandmom and Papa left for (Omaha)home. Virginia sat with Eli while mommy went to get her hair cut and we got back to everyday life. Since then it seems there is plenty going on but nothing really. I think it is all in my head. You know winding down from the week’s events.

I have so many photos to post and that means I have to go through crop, resize and then post. So I will get to it later today or I will try really hard to.

God Bless

Don’t forget to swing by the Eli’s Angels site and look at the photos we have up of some of the kids already in the program. They are posted on the “Eli’s Angels Members” page. Chad is responsible for all the good work. He does have a couple more to post and right now work has him so busy I think he is really tired.

Thank you to everyone that sent a little Birthday happiness our way! May God Bless each and everyone of you in many ways.

Happy Birthday To Eli!

Amber wanted to say a quick Thank you to Kayla and her family for taking such good care of her while we were out. Oh and coming over today to get her for a trip to the dogpark. That is a first for her and I hope it went well.

Two Children that are very close to my heart earned their wings recently. I just learned this news today. I am sad they are gone. They are in Heaven now and will be there to show Eli the ropes when joins them. It comforts me to know that so many amazing children will be with Elijah. These children will be missed dearly. Jacob was one of our little buddies and we have followed his journey for many months now. His birthday was the same as mine and I will always think of him. Like Eli, Jacob's life took him through more that you or I can imagine. Yet through it all he had a light that could never be taken. Now he will shine in Heaven.

Jacob
Bracken

Pray for these families....

Friday, February 11, 2005

Today was just beautiful outside. The sun was shining brightly. There was still a little chill in the air so no walk for Eli. He had a very quiet morning. Virginia stopped by to hold the handsome guy for a while. Mommy got out of the house for about an hour or so. Running here and there doing the little stops that are hard to do with Eli.

Throughout the day and a little last night I kept massaging Eli’s belly, hoping to stimulate a good poop. Miralax wasn’t doing the trick this week. It had been seven full days since his last bowel movement. Today is the last. I try not to let him go over seven days. It just isn’t good for him. Tonight I massaged his belly for a good while and then had to resort to the suppository to get him going. Wow! That did the trick. POOP. Then Bath.

He has been doing really well with the saliva, cross your fingers it stays that way. The tremors/shaking in his arms is getting more apparent now and seems to be happening every few minutes. It happens more often and stronger in his left hand. We are still not sure how they relate to his seizures. His normal seizures aren’t that bad and are holding steady. Tonight was a bad mouth night. After his bath I was brushing his teeth and he bit down on his little brush and wouldn’t give it back. I let him have it for a bit and then he was foaming at the mouth. I put one of the mouth sponges in to release the brush and well he bit down on that too. He then looked like a walrus, the toothbrush sticking out of one check and the stick to the sponge out the other. CRAZY KID.

Eli’s Angels is going strong. It seems Chad and I are always finding something to do. We love it and are having so much fun. There are some really good things in the works due to some wonderful donations. Ok just one little hint and that’s it. Hummm one word only (publisher). Well I am so excited. If you have a child affected with a mitochondrial or metabolic illness please go by the website and fill out an application.

Eli’s Angels non-profit for children affected with Mitochondrial or metabolic illnesses.

We are getting ready to celebrate Eli’s Birthday. I told all of you that it will be just family. I don’t want to spoil any of our plans so I will update after his birthday and let you all know what we did. Eli will get to see his Grandmom and Papa Kurtz. They are driving in from Omaha tomorrow. I am not sure how long they will be here. I do know that we will all be competing for snuggle time with the birthday boy.

I plan on putting up more photos sometime on Saturday sorry you will just have to check back. I am going to bed. Way too tired to play with photos tonight. The boys are both sleeping. I guess I should be too. Oh just one little thing. Sometimes my E-mail outbox plays tricks on me so if you are expecting an answer from me and haven’t received anything. I have answered all that I had sorry if you didn’t get an answer. Please send me another e-mail with the original request. I really hate that when I don’t know which messaged got messed up.

If you live in our local area and you get Denver 9news. Our little buddy Lily is going to be on Sat at 10pm so tune in to she what a cutie she is.

Saturday
One prayer request: Elijah is very gunky today. I think he aspirated. He has really bad choking and gagging. I want so much for him to have a nice birthday.

We took so many digital photos I can only post two months. I hope I can get through the rest of the year. There are still so many great shots. Well here is some from March and April of 2004! Oh and since we will have company here I can’t say when I will update again. It might even be after Eli’s birthday. God Bless

Thursday, February 10, 2005

No change in Elijah’s health or anything exciting around here. Chris comes today and I am not sure what else we have going on.

Thought I would share more photos. Enjoy! I will keep posting different ones and I will remove some that are up here. I think it is fun to share all the great pics we have of Eli and believe me when I say I can’t possible share all of what we have taken of Eli.
God Bless
Ann

Monday, February 7, 2005

I couldn’t quite wake up today. I stumbled into Eli’s room for the early morning meds. He was a waking up but I couldn’t function yet so I turned on his music and we both went back to sleep. I think maybe I had a little allergy problem. I cleaned out the vacuum bag yesterday and it was so dusty it went everywhere. I think it really caused me some issues. Even when it was time to get up my eyes were swollen and itchy. I felt really tired I think it will all clear up by tomorrow. Besides my eyes and being tired which I shouldn’t (I have been sleeping) be I feel alright.

Now onto the real reason you all come here. The precious little boy we all know and love. Elijah! Well he seemed to have a very good day. Snuggle time, breakfast, visit from Chris, his massage and finally a very long afternoon nap. As you all can read he had a rough day. Ha Ha.

His health has remained the same. The little yeast or thrush in his mouth comes and goes. I wish I could be more diligent in treating it so it might stay away longer. He is still having the tremors or shaking of his left arm and now it seems it right is doing as well. His little muscles need to be worked more and more often. I don’t know if he is cramping. He just doesn’t look comfortable and is stretching often. Cindy his massage therapist showed me a few more things to specifically address these new problems. I don’t know if they help but Elijah just loves the hand thing. His little eyes close in peace when I do it. I have to tell you all for what Eli is missing he is so darn funny. Last night I was rocking him before bed. I had him on my chest(his favorite spot) and I felt his left arm push on my back and keep pushing until his couldn’t bring it up anymore. Remember Eli doesn’t move much at all. He can’t. Well I wasn’t sure what he was doing so I did my mommy thing and thought I would move him to his other spot on my shoulder. That was all his wanted. He took a deep breath and then I felt his entire body relax. That is his sign that all is well. Things like that always amaze me. He has lost so much and he still knows what he likes. What a sweetie.

One week until Elijah’s Birthday Wow!!!!

Saturday , February 5, 2005

We ran to a few places today trying to enjoy the sunshine. Wow in some place you would hame thought it was spring. Now I bet tommorrow there will be rain showers. Oh well. Eli has lots of sizures in the morning but he was sleeping all afternoon so I don't know how they affected him.

God Bless you and I pray the weekend goes will for all of us.

Wednesday, February 2, 2005

Today was a good day. Elijah slept off and on. The morning was a bit crazy but nothing bad. Elijah did really well with the congestion. “No Suction”!!! It was a very sunshiny day but still too cold for little bear. Eli even got to see Grandmom and papa via web-cam. Oh my I just can’t think of anything profound to say. Good days are good days and I will take them however they are served up.

My two year old. It just sounds so odd. I won’t have to say his age in months anymore or figure out what month it is. He will be two. Wow!!! Many people are taking the news about not having a party ok. I think they are disappointed. I know everyone that knows him wants to celebrate his life with HIM. I feel bad that we are not going to have a BIG celebration and I know it is the best thing for Eli so I stand my ground. Just because we are not having a big party doesn’t mean that we can’t have a big celebration. We should celebrate with praise to God. Praise for Elijah’s life and praise for the impact Eli’s life has had on so many. I have been asked about birthday gifts for Elijah. Well prayers are the best gift that you can give him. If you insist on sending him something. Hummmm! I read to him a lot, he likes soft stuffed toys, music CDs, and he grows so fast he can always use clothes (Boys small). Let your heart lead you. Celebrate his life.

Thank you to all of you that have done so much to help our family. The meals are so great and really show the dedication of those around us. For those of you that only visit this site. Do you know there are people in our lives that have dedicated time to make us dinners for a year and a half? Sometimes I feel guilty and perfectly capable of doing these things on my own. Then I look back at the days that dinners have come and I am oh so thankful. I am humbled. Jo! Oh I wish everyone had a Jo. If I could send her to all the mothers I talk to, they would feel the same as I do for her. She has dedicated one day a week (most weeks) for over a year to come and sit with Eli. She strokes him as they rock. Most of the time he sleeps and sometimes she does too. He knows her voice and loves her so. She can’t pick him up or move him much anymore due to his size and still she comes. I usually set him in her loving arms and have mommy time or get stuff done. Confident that he is being loved. I know that I can never repay everyone for the kindness that they have shown us and I am not a person that likes to take and not give back. I just want everyone to know that I may not be able to return such wonderful things to each one of you but know that I am thankful beyond words. I will never forget.

I read this tonight in a little book the Kreagers (my sister’s family) got me for Christmas. I thought it was cute. I think WOW I have a lot of angels around me.

"Be an angel to someone else whenever you can, as a way of thanking God for the help your angel has given you."
Eileen Elias Freeman

I am getting tired better go to sleep while it is still fairly early.
God Bless
Ann

Saturday, January 29, 2005

Eli had a fairly good day and he finally got to meet Lily. Well she got to meet him. He was comfy and felt is was time for a little snooze. Lily is one beautiful little girl. I wish you could all see her beautiful eyes. Her lashes reach to the stars. Elijah’s congestion isn’t fully cleared but it hasn’t caused any major problems lately. The only new thing is that his left arm has been twitching. Sometimes like a seizure and sometimes it is random. It started about two weeks ago and is increasingly getting worse. It was just his little finger and the pulsing can now be felt up through his shoulder. You can just feel the muscles twitching. Each time I see it happen I just shake my head. I know his poor little brain has so much atrophy. It is sucks to have it shoved in my face all the time.

Oh Elijah’s Birthday is coming. Oh boy he is going to be two. I don’t say I never thought this day would come really I didn’t think about it. I just can’t believe it. Wow! As of now we know that we are not having a party. We decided that it will be a family year, a small intimate celebration for Eli’s Birthday. We don’t want to punish anyone it is because Eli is blind and has a real hard time in strange environments, loud noises and lots of people. Some ideas we have but have not decided on are that we might take him swimming. He hasn’t been since we took his pool down this fall. We have also been back and forth on the haircut issue. I think it will come down to a coin toss. I do know one thing no matter what it will be a special day. Will let you know what we have in the works after we make some decisions.

Thursday, January 27, 2005

Elijah seemed to have an even better day today. Chris came and said that most of the congestion remains in his throat. That means that his lungs are still clear. That is always music to my ears. He still struggles to cough but it is not because he is sick. It seems to be a direct result of the progression of his disease. It was a little on the cold side today so no walk. The news says maybe snow soon. I don’t have much to complain about after I saw some of the pictures on out CB friends sites. Wow!!!! Many are buried under a mountain of snow.

Eli napped almost all day. It was a good day to get some Eli’s Angels IRS stuff done. I had to do a few add ons. I don’t want to get too excited but it is looking good. Chad has done lots of work to the Eli’s Angels website so come for a visit. Check it out. It is not finished yet and we have many ideas but if you have any suggestions well just let us know. It is a work in progress.

Wednesday, January 26, 2005 3:01 PM CST

Hello, Thought I would get on and give you all a quick update. Elijah is feeling better but still fighting bad congestion. Nothing like Monday but sometimes durring the days he fights pretty hard. He is sleeping better and not as much gagging. Maybe that means his gunky stuff is getting a bit thinner. We did get out yesterday for a little walk, just around the block. He coughed alot even so I know he enjoyed the sunshine on his face. It is to cold for Eli outside today so I am just thankful we got out when we had the chance.

God bless
Ann

Monday, January 24, 2005 Late night

I hate to keep doing this to you guys, one journal good and one bad.
Welcome to our world. One day good and one bad!

I can say that at least there are good days. All the bad ones make me oh so thankful for the good ones. My emotions are taking the ride also. It is strange what happens to your body and mind when you spend almost two years caring for a terminally ill child. Everything that happens is so important and requires a great deal of energy. I don’t know what lunch would be like without tubes and meds. Constantly weighing what is right for your child and guessing if they are comfortable. Every time you think it is the END and you try to brace yourself for it, your most beloved child bounces back. The only way I can explain it to those of you that don’t understand is this way; imagine a roller coaster that has hills so high they reach to the heavens and dips so deep into hell. Ride that for a year and the hills and dips don’t seem so extreme anymore. It is almost as if the roller coaster is coming to an end but I have said that before. Our little fighter has shown me a few times to never count him out. He will always prove me wrong.

Onto the update: Sorry to tell you all this but this week seems to be a repeat of last. Eli fought the congestions so hard today. He won but barely. He is now sleeping and it seems that he is out for the night. He broke my heart over and over and I know his dad’s too. It is not his fault he only wants to breathe. It is just so hard to watch him cough; turn red, and then tears build in his eyes(he can’t cry so tears means pain) and then roll down his checks. Maybe he can get something out but mainly it is fruitless. Chad and I tried suction and a few other clearing techniques it seems it is something Eli has to do. He is just so gunky. On a positive note if this is a repeat of last week he should cleared out by morning. Last week it seemed like the start of something horrible but cleared up. Like Margo (Corey’s Mommy) has said many times before. “Oh how a day can change things” or something like that. A day can really change.

I just ask you all to say a prayer that Eli will bounce back and clear up. It is so hard as a parent to sit by and watch your child go through something like this. I will pray to be able to update after a good day again soon.

Update: 12:32am

One last check on Eli before heading to bed. He head had moved which never happens unless something happened. Eli just keeps coughing and sneezing. I wish he could sneeze more, it seems to get more gunk up. I suctioned him and he is sleeping once again. Wow!!! Will I be able to sleep? Sometimes yes and sometimes no. It is nights like these that I must put all faith in God to watch over my beloved little one. Trust.

I guess I will find out. Good night everyone.

Thursday, January 20, 2005 3:33 PM CST

Thank you all for your prayers for Eli’s health. He seems to be feeling better than Monday. Tuesday he slept almost the whole day I was afraid I would have to wake him to take a bath but he was nice enough to wake for that. Wednesday we hung out around the house until Daddy was done with work. The weather was 58, we took advantage of it and went for a nice long walk. Eli’s baby blues we open most of the ride.

Today started off badly. He was awake and contorting his mouth early. That means ouch mommy. I think he felt a little better after a dose of Tylenol. Chris said his heart rate was down and he seemed real comfy. He has a little gunky stuff today but it is clear and he has been getting it up one way or another. He is taking a little nap right now but when he wakes we are going to get outside. It is 70 out today and the sun is shining. Wow!!!! Praise God it is just what I needed. I nearly passed out after the walk yesterday. I am so out of shape. Endurance is not my thing anymore; I am a power lifter (Eli’s 43lbs) most of the time. Elijah is having fewer seizures at 10-15 a day. That is wonderful!!! They are also not as long.

Maybe since I have some motivation I can get those things done around the house that I have been meaning to do.

God Bless and Have a wonderful Friday

Monday, January 17, 2005 8:58 PM CST

Things have been going ok. It had been a full 7days since Eli had a bowel movement. Friday we had to do a little extra to get the poop out but it worked. He has had a few new problems also. Elijah had a little yeast in his mouth and we have been working to keep it away. It seems to be doing alright. It is just hard to keep up with. Any and all fluid introduced into his mouth is hard for him to handle. When I brush his teeth I have to make sure I wipe out all the toothpaste foam. With the medicine for the yeast he does alright. We only have to use a little bit and swab his mouth. So the last week we have been keeping an eye on that so it doesn’t get worse.

The weekend was pretty ok. Eli has been off and on sleeping a lot, probably a result of the Topamax increase. The issue this week seems to be secretions. Friday he coughed a lot during the night and his blanket was full of slobber in the morning. It comes and goes. Saturday or Sunday the secretions didn’t seem to be much of a problem. Today has been constant coughing and suctioning battle. Chris came early and held him he was so gurglly. She got up a bunch with the suction machine. A few hours later he was back at it. I keep wiping and suctioning it just doesn’t seem to help. It is in his throat and hard to reach. I am thankful that his coughing is working. Sometime he is too weak to even cough it up. So far it is all clear let’s pray it stays that way. Elijah did get a super poop out tonight, stinky too. I was just happy it wasn’t another 7 days.
Tomorrow Elijah’s buddy Jo is coming to see him. Mommy has a few things to get done.

As far as me I do alright too. I think I need a couple nice days so I can get outside. I have been out and about but nothing takes the place of being out in the sun if even for a few moments. I asked someone the other day “If they ever felt like sitting and staring at the walls cause that is how I felt”. Some days I am just tired not sleepy tired but life tired. It is a hard mood for me. I am generally a happy person. Even in such a situation as now I still try to keep an upbeat attitude. It doesn’t mean that I don’t get sad. It means that I don’t stay sad. I think exercise is my main problem. Since it has been cold I haven’t done much of anything but housework here and there but that just doesn’t do. Motivation is also a problem. I will work on that.

Update monday night: Prayers needed please......

Elijah is in bed and sleeping but keeps waking up coughing and sneezing. He felt warm so I gave him something to help and suctioned him. I hope this is not going to get worse. It has been a while since he had his last bout with non-disease related illness. Pray that the snot clears and he feels better.

God Bless and have a wonderful week.

We are working on getting a wheelchair lift in our house, since Elijah is so heavy it is becoming harder to carry him up two sections of stairs. Paula at Arc has been so kind to set of a fund to help defer the costs. If you would like to help our family get this lift send donations to;

“Elijah’s Fund”
c/o The Arc of Adams County
Attn: Paula
11698 Huron St, Suite 106
Northglenn, CO 80234

Thursday, January 13, 2005

It has been a couple of days. Sorry to leave you all wondering. I am really tired but I wanted to get an update in. Eli did ok today. Only a handful of seizures all day. I really think the increase in medication is affecting him now. It has been almost a week. I just don’t know how he will be from day to day so I am just thankful that today wasn’t so bad. He is sleeping peacefully and I hope he has a wonderful Friday. It should be fairly quiet. Chris will be by to check on bear. Thank you all for your prayers I am always overjoyed to read that each one on you has been praying for our little Bear.

Something to think about: February 15th Eli will be Two This Saturday the 15th he will be 23months old. I just can’t believe it. We are debating but Chad and I think that for Elijah’s birthday we will take him to get a Big Boy haircut. If you have been looking in most of our latest photos, Elijah has really long hair. It has never been cut. We just didn’t want to cut it because it is so beautiful but he will be two and he should look like a little boy. Who knows we might change our minds. That might mean that I will have to start slicking it over with some sort of goop. It is way out of control. Most days he looks a bit crazy.

God Bless
Ann

We are working on getting a wheelchair lift in our house, since Elijah is so heavy it is becoming harder to carry him up two sections of stairs. Paula at Arc has been so kind to set of a fund to help defer the costs. If you would like to help our family get this lift send donations to;

“Elijah’s Fund”
c/o The Arc of Adams County
Attn: Paula
11698 Huron St, Suite 106
Northglenn, CO 80234

Tuesday, January 11, 2005

I am very sorry to have to tell you all that after such a wonderful Monday morning, Monday evening was not so good. Eli started having seizures about 6:30 pm and it seemed like they were every 5mins or so for a couple of hours. We gave him a Diastat but it didn’t seem to affect the seizures at all. Now my thoughts are that since the damage in his brain is beating the medications will this continue or will we have another relief period. We go up another dose today and I hope that will help. He went to bed just fine and seemed to sleep well. Maybe today will be better. Yesterday the he had more seizures than the last 3days combined. Please pray for some relief for little Elijah.

Monday, January 10, 2005 5:33 PM CST Monday Wonderful Monday!!!

I actually got up early, showered, did a little cleaning all while Eli took it easy in his Lovesac. Sleepy Guy! The morning flew by. Before I knew it Cindy was here for Eli’s massage. Not more than a couple of minutes went by and Chris was here too. Well I guess all the Monday stuff done in the morning. Wow!!! Eli was in and out during the massage but soon after was fast asleep in my arms. He is just too snuggly. He ate lunch then off to sleep again. Thank you all so much for your prayers. Elijah only had a couple of seizures today. What a blessing.

Then I got a call from Sarah a wonderful woman that I meet through E-mail. After talking to her and hearing her passion I decided to share her families story with you. It is so moving I cried. This is a story of a mother’s mission and I wish for you to pass this website on to anyone you know.

I was watching the news one day and I saw a beautiful little girl. She mesmerized me. The longer I watched I saw such similarities to what our family is faced with everyday. Then I saw one of the doctors that helped in Eli’s diagnosis, Janet Tomas speaking about Lily. I want you all to meet Lily and her mother Sarah or at least visit Lily’s website . This is a little girl that CAN change the outcome of many lives without even knowing the outcome of her own. Lily has a metabolic disorder called Glutaric Aciduria Type I or in short GA1. Most surprisingly to me is that with expanded newborn screening the sever affects that Lily has suffered may not have occurred. It is sad to think that $25.00 would have changed her life if only Sarah knew about these tests. Sarah now wants the world to know about what happened to Lily to bring awareness to expanded newborn screening. It could mean the difference between having a child that functions normally or a child such as Lily that must undergo therapy: PT and OT, G-tube feed, and damage in her brain causing many delays among other medical issues.

I have talked with Sarah and I do plan to meet with them real soon when Lily is feeling better. I look forward to meeting such a precious little girl. Lily has been sick often and I hope you can all say a prayer for her. I want everyone to check out this site but I don’t want you to get the wrong idea about Elijah’s Leigh’s Disease. We don’t even know the mutation that caused Elijah’s Leigh’s Disease. There is not a test that could have told us any sooner nor would it have made a difference on how we have treated him both medically or emotionally. After seeing the story and talking with Sarah I look at Eli. I think that if I there were a test out there that would have prevented his suffering YES! I WOULD HAVE WANTED TO KNOW. I encourage everyone with a newborn or planning to have children to ask about these tests. It could make a difference in having a child affected such as Lily or a child that can function normally. The more I think about this the madder I get. Please help Sarah to get the word out.
Thank you all for the many prayers for Eli. He has been having a good couple of days. Well at least until Monday evening. I also want to thank Jo H, Joan K and anyone else that has saved cans to help with Eli’s Angels. It is getting to be something that will bring such joy to my life as well as the children that will benefit. I just can’t wait. I have been busy getting organized so Eli’s Angels will be a success.

God Bless and have a wonderful day!!!!!

Saturday, January 8, 2005 12:12 AM CST

This week has been a good one with the exception of Eli’s seizures. They have been well into the hundreds. Some days his body is too tired to even have a seizure. Friday we took Elijah down to see Dr Bernard and Dr Benke his neurologists, two wonderful and CARING doctors. Elijah is up to 43lbs and his has grown a lot in length and is 38 inches I think. No wonder why he is so hard to carry. It was a good visit and we have some new changes to Eli’s medication to try and reduce those darn yuckies. He had several while we were there and even more when we got home. It was a very bad day for seizures. We even gave him two Diastats in the evening to help him out. Not sure if they did. He pooped soon after and then it was a 10:30pm bath. Obviously it was a huge one. His schedule was all messed up for the day. He went right to sleep and seemed to be peaceful.

We started today off really well. No seizures that I know of and he is resting. I hope that is the same throughout the day. I pray for a very quiet weekend.

We are working on getting a wheelchair lift in our house, since Elijah is so heavy it is becoming harder to carry him up two sections of stairs. If you would like to help our family get this lift send donations to;

“Elijah’s Fund”
c/o The Arc of Adams County
Attn: Paula
11698 Huron St, Suite 106
Northglenn, CO 80234

Monday, January 3, 2005

Hello everyone. I hope you have all made it through the holidays without too many extra pounds.

New Years Day was uneventful and Lot’s of FOOTBALL. I think I have seen my share. It is a good thing I get a few months off. Saturday night I decided to take a bath with Eli. I haven’t done it in awhile but he used to love to float. When I get in the tub with him he doesn’t need his bath chair because I just hold his head up. It was a lot of fun. I just don’t think he liked it the same as he used too. He did all he could just to have me hold him. I tried to read weather that meant he liked it or not but I just couldn’t tell. I can only hope he did. I know mommy did.

Sunday Chad and I asked Colleen and Steve to watch Elijah so we could go and see the Broncos beat the Colts. The may have beat them on Sunday but it wasn’t Payton and the rest of the starters. So we will all see what happens. It is just hard for me to be away from Elijah that long. I miss him so much. I know he was in good hands. Plus Amber (our dog) really missed Colleen since her vacation to their house Thanksgiving week. She really got spoiled. Colleen is Amber’s best friend. I can’t say she is picky anyone who will pet her is her buddy.

I have to say that Monday’s are becoming my favorite day of the week. Last week we had an awesome day and today was quiet but just as wonderful. Chad went to work and for the first time in a few weeks it was Eli and I. Chris came first thing and checked him out. I suspected Elijah might have aspirated a little on Sunday and she did say that his upper airway sounded a little junky. He has been coughing and trying so hard to clear it out. I try to help but it is just out of my reach. I hope he can do it on his own. It is always better that way. Otherwise it becomes a long fight to get him cleaned out every night. Other than that he had been doing pretty well with all the junky stuff. The suction machine was on vacation. It is always ready I just hope we don’t need it.

POOP!!!! Ok well you all know how I love this subject so I hope you all will stay with me. Here goes.
Eli’s bowels are changing. I am not sure if this is a permanent thing and could be a result of change in medication or his system is processing differently. He normally is a little constipated and it takes Miralax to help him push things through but I haven’t given it to him in a week. It was good to see him poop ever four to five days. The last couple of days he has pooped about EIGHT times. Some of them are diaper bombs and some skid marks. The last couple of weeks he has had a major increase in GAS. Oh my God at first I blamed Amber not knowing that foul odor could come from my little angel then last week at the bookstore he kept farting on me. The little kids in the store kept looking. Who really knows what they were thinking and I really didn’t care. I am not sure if the Gas and Poop is something to be concerned with or not. I talked to Cindy today during the massage and she said his bowels don’t seem to be in discomfort. She even said it sounded good. If Eli is ok I don’t mind cleaning poop lava all day if I have to.

The dreaded teeth update:
Still these awful things cause my little bear so much pain. The bouts with the pain are spread out a bit but are still a major issue. I think the bottom molars are half way and the top is where the pain is coming from. It is just so hard to tell. If I think he is in pain I do all that I can to help. My hands are tied and there really isn’t much I can do. Growing pains suck. He shouldn’t have to go through them. He is special and should be able to skip the whole teeth thing.

Believe it or not I can’t think of anything else tonight. I will check on my sleeping angel and head to bed.

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