How far we have come! 12/29/08

J. and the kids at the zoo 9/19/2008

Kensley 7 months 12/18/08

Kensley on 9/19/08

I have been looking back at the pictures of Kensley when we first went to Omaha. She was only 4 months, but she was very small for 4 months. She just didn't look very healthy, but to see her now is an amazing change. Today she hit 17lbs. WOW! God is good. The next year is going to be an amazing year that shows us the miracle that God has planned for our family. We are not going to concentrate on the things that Kensley will never do, like eat a piece of fruit or run a marathon, BUT we are going to concentrate on what we can do, like eat meat and potatoes or have birthday cake made with Splenda. God will see us through and He will see you through too, no matter what your challenge may be. Hold tight. It's going to be a miracle ride. Happiness to you in 2009. Tana

2009 Here we come! 12/27/08

Christmas morning
Kensley at the dance recital

Kaydee and Rachel in their Leroy the Redneck Reindeer outfits

Cooper with Santa

Well, I hope everyone enjoyed their Christmas celebrations and managed to get some Christ worship in as well. It was a hectic and joyful time for the Free family. Kensley has done well. She is no longer on TPN. She is still on IV fluids, but there are no vitamins or protein going through her central line. Her IV fluids run for 10 hours each night and that is all. So far so good, and tomorrow is her 8th month birthday! I haven't blogged since before school was out for the kids. That is when the schedule went out the window. I am sure many of you understand the whole school parties, dance recitals, shopping, Christmas Card writing, Christmas parties, Church pageants, etc. etc. thing. All those activities can really mess with the peaceful meaning of Christmas. AND, we actually didn't do everything that we were invited to do this year! I thought we had pared the schedule down quite a bit, but it was still hard to do everything and get everything done. I was quite overwhelmed. It is just so difficult to maintain Kensley's constant care and do the other things like shopping and going to school parties. We try so hard to keep her at home whenever possible, which means that either J. or I miss out on being with Kaydee or Cooper. This time J. had had enough. He wanted both of us to go to Cooper's Christmas party, so we did. Then we all went to Kaydee's Christmas dance recital. AND we all survived those events fine, BUT the Christmas Eve service at church was another story. Cooper started throwing up at 4am on the 26th and continued until 10pm that night. He has not thrown up or ran fever since last night so we are hoping that he is over it. So far no one else has gotten sick. We Lysol-ed everything at least three times and kept Kensley in her room all day, Cooper in his. PRAY for us. If we can make it through tomorrow, I think we will have escaped without Kensley or Kaydee or J. or I getting sick. Wow! I know that God doesn't give us more than we can handle, but right now I wish He didn't trust me with quite so much. We have come so far, and we could be getting her line out soon. She is such a miracle and she teaches us to be better people every day. She weighed 16 pounds and 14 ozs. today, but her stools are so watery. I change her outfit at least 4 times a day. It can be very draining, but the alternative would be not to have her at all. Praise God for poopy diapers. It is the same way with all of our kids. Everytime your teenagers rolls their eyes at you, remember that you are blessed to have them even when it is hard. Hugs from Heaven, Tana

Christmas memories! 12/16/08

The meaning of Christmas? If you have lived enough years you know that it is not about presents, parties, or decorations. It is the time when we celebrate Jesus, our humble savior who came into the world in the most humble way. But this year, Christmas means even more for our family. I just keep thinking about Jesus being born, not in a safe and sterile hospital, but in a stable filled with animals who probably had never been washed. There were no soft new receiving blankets, but strips of cloth. Yet, He was born perfect and glowing. Well, that is the way Kensley was born too. She was pink and perfect. She cried out at being born, just like a baby should. It was only after the birth that everything went sooooo terribly wrong. When I think of that time, I shake uncontrollably. Now I know what post traumatic syndrome means. I have remained faithful. I have prayed. But I was confused too. How could God solve this problem? How could He cure this baby with such an impossible condition? How would I ever be a Mom to Kaydee and Cooper while being a nurse to Kensley too? How would I get it all done? How would we ever find a sense of 'normal' again? How, How How! Well, here I am, seven months down the road and Kensley has come so far. She had accomplished all the things that the doctors said she would probably never do. She continues to get stronger and healthier. I guess I have learned my lesson, or at least remembered it...sometimes it isn't our place to understand the HOW, but to just wait on the impossible, because NOTHING is impossible to God. We are not done by any means, but we are finding a way to live life and to live it loving each other no matter how inconvenient, or how messy the house is, or how little time we have. Hugs from Heaven, Tana

I am tired. 12/10/08

Kensley is doing well. Her labs looked good, and we are being told that she may be off TPN within the next two weeks. As is, her TPN(nutritional infusion) is very minimal in calories right now, but we have to work off slowly to give her body a chance to compensate for the intravenous calories. She weighed 15lbs and 13ozs today and she is playing and happy.
I, on the other hand, am tired. SOOOOO tired. A muscle in my back is really paining me. I am even having a hard time moving as fast as I want to because the pain is so bad. And there is so much to do. I guess I am fighting to find that little extra bit of speed and strength. We all seem to need those things the most around Christmas. Well, I am creating an anarchy. I refused to be stressed any more. I am going to finish my Christmas Holidays by getting up each morning and thanking God for another miracle day with Kaydee, Cooper and Kensley. Thank you Lord. Now I just have to go to bed. Sleep tight and remember, Jesus loves you and so do I> Tana

Recipe: Christian-cook slowly! 12/09/08

Kensley is doing well. She weighs 15lbs and 12oz and is playing and happy. She has made it through the central line repair without an infection. Her line however, is becoming increasingly harder to draw blood from. It is infusing well, but the draws are harder. I pray that it will hold until January, when it may be removed. For now we are all feeling the Christmas spirit and know that this Christmas will be especially meaningful because of the miracles and answered prayers that we witness everyday. Kensley is by no means completely out of danger, but we have great hope that that day will come, and we will continue to pray for a complete healing because God wants to grant the desires of our heart.

It has occurred to me that being a Christian does not happen overnight, or in the blink of an eye. AND, I do not believe that it suddenly happens the second that you hit the baptismal waters. No, baptism is just the moment in time when you decide to start becoming a Christian, and the cooking begins. Apparently Christians require many ingredients and a lot of stirring the pot. Each one must be seasoned with different spices and such. Then you have to let them rise for a long time.
I came to this conclusion after talking to a friend of mine. She was really upset because in her opinion "Tana, you are such a good Christian. If something as horrible as what happened to Kensley can happen to you, then how much worst will happen to me." First of all thank you for the compliment, but there are no good or bad Christians. Especially me, I'm just a struggling sinner like all the rest of us. You either believe and are a Christian or you don't believe and you aren't a Christian. Well, of course some people are only pretending to believe. Just like your mother always said, 'Actions speak louder than words' You can tell the believers from the non-believers by watching and not listening. So, I always hope that my actions show you how I feel about our Lord. It is true that I have had some trials. We will call them my seasonings. But, with each trial, each hurt and each pain, I have become more assured that God loves me and Jesus is standing with me. And more assured that HE is not finished with me yet. I truly believe that there are blessing and miracles and wonderful ministries ahead of me. There may even be a few more hardships, but with my hand in the Fathers, I will push ahead. I thank God everyday that He thinks this crazy Texas lady is worth all the trouble. BUT, He does and he thinks you are worth it as well. We will all face things in this life. We learn to love life only when we learn how precious it really is. So don't beat yourself up about being the perfect Christian, just keep trying and praying everyday. Life may not be fair, but God is just and if you remain faithful to Him, He will remain faithful to you. We all need a little seasoning and things baked slowly always taste sweeter. Hugs from Heaven, Tana

48 hours 12/05/08

Well, it has been 48 hours since we had Kensley's central line repaired. So far so good. She has shown no sign of infection or fever. She is eating well and playing, happy and laughing. Just 24 more hours and we will know we made it through the procedure without an infection. Praise be to God. Our dietician has cut the TPN(intravenous infusion) down again, so that at this point Kensley is receiving little more than fluid through her central line. If she can maintain this she will be off the TPN by January and her central line will be removed. Kensley never ceases to make me believe in miracles. She always comes through. I on the other hand always show the strain. I try not to worry. You know what everyone tells you... Let go and let God. Well, I think I do that and then my body tells me the other side of the story. How you ask? Well, today I woke up with a cold sore on my lip. When I am extremely stressed or very sick, what happens? A cold sore. Man, I hate that! So, if you are stressed-STOP IT! It will effect your health. Keep praying, I'll be praying for you. Hugs from Heaven, Tana

Fixin' It! 12/03/08

Well, today is the day. The repair kit arrived yesterday afternoon and the surgeon called. We will be getting the frayed line repair this morning at 9:45am. Pray that it works and carries us through until the line can be removed in January. Love to you all. Thanks for the prayer. I'll be praying for you, and if you have time around 9:45am pray for Kensley. Hugs from Heaven, Tana

Still Holding On! 12/2/08

Well, we made it through Thanksgiving. I cooked. We usually go to one of the grandparents, but since we have traveled sooooo much lately, we have decided to do all the holidays here at home. This will help Kensley stay healthy and rested.

Family Update: Kensley is weighing in at 15lbs and 7 ozs. and her labs look great. Cooper has suddenly grown 3 inches taller (so all of his pants are floods). Kaydee finally got to change her earrings from the ones that her ears were pierced with. It was a huge day for her. I have lost 3 lbs( depressingly only 47 more to go). J. is on the road most of December. AND, this family has 4 dance performances, one church Christmas pageant, a UIL contest, and to light the Christmas Eve Advent candle at church. Not to mention shopping and baking. I am sure many of you have a similar schedule, and YES, we did it to ourselves by agreeing to all of this. So, I'll be praying for you to make it through with a heart full of Jesus, the real reason for the season. I hope you'll be praying for me.

Central line update: It is still frayed. The surgeon is going to do a repair on it as was requested by Omaha, BUT...NO ONE IN TOWN HAS A REPAIR KIT. I called both hospitals, the PICU, the NICU, the ERs and NO ONE had one. So, J. called the manufacturer of our central line and they gave us the item number, but of course we are not allowed to order one. They said it could be overnighted if ordered by a doctor. Sooooo, I called the surgeon back and ask them to order it. They did, BUT because it had to go through their hospital supply chain, it could not be ordered on the Tuesday before Thanksgiving. It was supposed to be ordered Wednesday, the 26th and be here by Friday. IT DID NOT ARRIVE. I called Monday (yesterday) and IT HAD NOT ARRIVED. The surgeon's nurse assured me they will call immediately when it comes in. I am not angry about all this, just nervous as a cat on a hot tin roof. This central line is sooo critical. It is both a blessing and a threat. Blessing because it allows us to give Kensley the needed vitamins and calories that her body has not adapted to absorb yet, and it allows for painfree blood draws. Threat because they get infected so readily and this could lead to death if not treated immediately. This is why it is so wonderful to be in Omaha. They are so specialized in working with short bowel kids that they do these central line repairs quite frequently. After all, kids will be kids, and they break their central lines through play and normal activity. BUT, we are hoping that we only have 6 and 1/2 more weeks with the central line and then it will be removed taking away that risk of infection. If you have time, pray for this. If it is God's will to get a new line, fine. I just don't want any infections to arise because of breakage and late mail service! I'll be praying for you. Hugs from Heaven, Tana

Fun with Friends! 11/27/08

Enjoy the mini show. Don't you wish you had this much energy? Happy Thanksgiving. We all have a lot to be thankful for.

Here come the Holidays! 11/21/08

The first four months of Kensley's life felt like a lifetime in themselves. It was soooo hard. Then we went to Omaha and things started to go at light speed. Kensley started making great progress and growing. Suddenly we were back home and 6 months old at more than double our birth weight. Now we are quickly approaching 7 months old and we(meaning WE all had it-Mom, Dad, Kaydee, Cooper and Kensley) have survived a stomach virus with sinus infection and huge swollen mattering eyes. Kaydee and Cooper even had strep along with it. I have lived in fear of Kensley getting any virus. Like usual she just used the strong spirit that God gave her to push through. She is up to 14lbs and 11ozs. happy and growing. Our trip to Nebraska was good, but hard. We started driving on Sunday, stopped and spent the night in Wichita, Kansas, got up drove another 6 hours into Omaha, had labs drawn, spent the night, got up went to our appointment at 8:30am and then started driving again, stopped in Wichita again, got up the next morning and drove another 9 hours back to Lubbock. Kensley made the trip fine, but J. and I were so tired and sore that we will probably fly from now on. NOW, the rest of the story...
The good news is that Dr. Mercer says that if we continue making this progress we will be off of our TPN and fluid by January first and that the central line can come out during our next trip to Omaha. PRAISE GOD. GLORY TO THE MOST HIGH. Now the bad news is that on the way home I noticed that her central line (which is a tube that goes under the skin and into a vein close to the heart) has a fray in the tubing that sticks out of the skin. This is typical of these line, just wear and tear. It has been in place since July. One hard pull could tear it in two. This was devastating to me because I had just found out that I only had 8 weeks to go. Well, our nurse coordinator, Brandi G., said that we should get it repaired and flush it with a large single dose of antibiotic. BUT, the surgeon in Lubbock does not do repairs anymore. He says that they don't work very well. He wants to replace it! AAAHHHHH! I ONLY HAVE 8 WEEKS LEFT AND HE IS TALKING ABOUT A WHOLE NEW LINE! Right now we are being extremely careful with the line. We have redressed it and placed the line securely under the clear dressing called a tegaderm and we will make a final decision on Monday after we talk to Brandi again. As my dear friend Joy reminded me..."God will not give me more than I can handle. I just wish He didn't trust me so much." Mother Teresa said that. Boy is that true. Thank you Joy for the encouragement. I needed it badly. Pray for me. I'll be praying for all of you. Hugs from Heaven, Tana

Prayer requests: Caed is almost home. Hallelujah. Pray for travel mercies and continued progress AND a smooth transition to doctors and life at home.
Jake is doing well and will probably make it home sooner than expected. This is the season for miracles. God is good. Pray for continued progress and strength for him and his family.
Pray for Kensley and for her central line and that we make the right decision concerning it.
Remember Jesus loves you and so do I. Have a heart full of love for Thanksgiving. It is fat free.

Hope Floats 11/14/08

It has been a tough week, but we made it through the stomach bug OK. The problem is that we found out that the throwing up and diarrhea are only the beginning of this virus. Apparently you throw up and have loose bowels along with congestion. These are all typical flu like stuff, only that with Cooper and Kensley it has turned into a sinus infection. They both have watery and mattering eyes, and congestion with some coughing. We have had Kensley tested for everything, Roto virus, central line infection, and bacterial overgrowth. All labs show that she is negative for all these things, Yeah! However, that means that she just has a virus-a bad cold-so we have to ride it out. She is doing all right and has gained a few ounces back. She is back on her tube feed and her stools are not as liquid any longer.

We leave for Nebraska tomorrow (13 hour trip). The grandparents are here to take care of Kaydee and Cooper. J. and I will leave with Kensley on Sunday, get to Omaha on Monday, have labs drawn, spend the night, have an appointment on Tuesday, and then start home. We should be back home late Wednesday. Sounds like fun, doesn't it! At this point I think all you prayer warriors better hit your knees. We are going to need all the help we can get!

I have to tell all of you thank you. It blesses my heart so much to read your comments. You help my hope to float. I am sure that most of you have seen the movie Hope Floats. It is a good movie. One of the more memorable lines from the movie is "They wouldn't let hopelessness win. You just have to give hope a chance and it will eventually float to the top." That describes our 6 month journey with Kensley very well. There was a time of little or no hope. All we had was our faith that whatever the outcome that God was already there and He would catch us on the other side. Well, I can see Him standing there with His arms wide open. We might not have made it all the way yet but I can see Him. My hope is floating and growing stronger everyday. All of you are a part of that. Hugs from Heaven, Tana

Still surviving 11/10/08

Kensley lost 3 oz due to the stomach thing that she has. It does not appear that we have a line infection, but we are going to have blood draws again tomorrow. We are also going to test for bacterial overgrowth which is common for SBS kid. Overall, she has feels OK, but there are times when you can see that she does not feel great. We had to remove the current NG tube and replace it today, so we took the chance to have a few tubeless pictures. This is getting very hard for me. I just couldn't get the tube in right today. I made her left nostril bleed slightly and the tube just kept curling. So I did get the tube back in her right nostril. She cried and cried, so I cried and cried. I just can't stand to hurt my baby. I haven't gotten much sleep in the past few days. I am tired and worried and sad. And I pray that God will deliver me from this. I know that the NG tube does not hurt her for long, but it hurts me for days later. I desperately want to find that place where I don't worry about Kensley living to see another day, to that place where we don't have to cause her pain just to keep her growing. Please God, deliver us. Heal Kensley, and give me the strength to wait on You. Just tonight Cooper said to me, 'I wish our baby wasn't so sick'. Dear Lord, I pray for that too, and I pray for all sick babies and children and their parents. Nothing could be harder, and no one needs for prayers. So I ask God to be with us tonight. Give us peace and rest to cope with another day and be strong for our children. Please read John 9:1-5. It has helped me a lot. Hugs from Heaven, Tana

Taking Jesus at His word. 11/9/08

Well, the weekend started off good. Kensley had been slightly congested in the mornings, but has gained up to 14lbs and 10oz. Then we get to Saturday afternoon. She started having liquid, brown, rotten egg smelling poops. You may not want to hear about her poop in detail, but it is very significant to her condition. She also started throwing up. Yes, it looks like we have the stomach virus. The one thing that I have worried about has happened. She is not running fever, so our doctors have instructed us to run some extra fluid as in infusion and to take her off her tube feeds. She is still taking bottles and some breast milk, but she is getting a lot less in volume and calories-HERE COMES THE WEIGHT LOSS-. Overall, you can tell that she does not feel great, but she is not feeling horribly bad either. Thank the Lord for that.

So, this morning when I was awakened by my baby girl throwing up, I was again ministered to by Jesus. After I had cleaned everything up, changed sheets, clothes, diapers, etc., I turned on the TV. Because I knew I wouldn't be making it to church, I turned on one of the many broadcasted church hours. A Reverend Price was teaching about the time that Jesus healed the nobleman's (the official's) son (John 4:43-54). The man's son is sick and dying back home in Capernaum. Jesus and this man are in Cana. The man asks Jesus to go with him to Capernaum to heal his son. Jesus says, "Unless you people see miraculous signs and wonders, you will never believe...You may go. Your son will live." BUT, here is the exciting part...the man took Jesus at his word and departed.

Do you know what happened? The son was healed. Read all about it, you will love the story.
There was a reason (besides being thrown up on) that I was up at 5am. I needed to be reminded to take Jesus at His word. Let him send his word out and it shall be done. We have the stomach virus. I was so afraid of this thing, but somehow, I know that we will make it through this. Kensley may lose a few ounces, but she will rise up out of this too. And when she does, more people will know how she is protected and watched over and healed by our Savior Jesus Christ. I am calling out now and I ask all of you to call out with me, Kensley, Jesus Christ heals you. (Acts 9:34). Remember Jesus loves you and so do I. Hugs from Heaven, Tana

Prayers: As always, I ask that you continue to pray for Kensley, Jake, Jack and Caed.
Caed has been staying in Omaha for over 2 months now, but there is light at the end of the tunnel and we pray that they will be able to go home to Texas soon with hearts full of praise for the work that has been done and strength for the work that is ahead. curiousaboutcaed.blogspot.com
I also ask you to pray for Ashley, a little girl who recently received a small bowel, liver and pancreas transplant. She had a rejection episode and I know that she and her family need lots of prayer and love right now. Please go to ashleyadamsjournal.blogspot.com and leave your prayer and comments. It would mean the world to them right now.

A Family having Lunch! 11/6/08

Update: Today Kensley weighed 14lbs and 7oz. She looking great and sleeping well at night. I praise God for our improvement everyday. She is still having loose and watery stools, but only 5 or 6 a day. For a baby without complication, that would be a lot of stools, but for a SBS (Short Bowel Syndrome) child, it isn't too bad. She is beginning to eat her baby food well also. This should start making her stools thicker, but it hasn't worked yet. Kaydee and Cooper are really settling into being great big sister and brother. I am sooooo proud of them. Both of them have that famous wisdom of babes. Wisdom #1: The other day, we decided to grab a quick lunch at Wendy's before J. had to leave for Grapevine, Texas on a business trip. Kensley had just had a bottle and she wouldn't eat again for a couple of hours so I took one of her teething biscuits for her to chew on as the rest of us ate. We all got our food and sat down to eat. After we had been at it for a few minutes, Kaydee said, "Hey Mom, we are ALL eating together." And we were! I started crying. There we were in Wendy having a major miracle happen to our family. J. was eating, I was eating, Kaydee was eating, Cooper was eating, and Kensley was gnawing away at a teeth biscuit. WE WERE EATING TOGETHER! I can't remember all the times that I prayed that there would be a time that we would all get to set down and eat together. Praise the Lord. I hope it is a sign of the good things to come and many more shared moments around the table. Wisdom #2: J. and I were talking yesterday and I mentioned how worried I was about potty training Kensley. I just can't imagine trying to train a little person who has to go sooooo often and soooo quickly how to make it to the potty on time. So I said to J., "I just don't know how I am going to potty train Kensley." Cooper was laying in the floor watching cartoon and he turned around and said, "Why? You potty trained us didn't ya? You'll figure it out." Then, as calmly as he made the statement, he turned back around and started watching cartoons again. J. and I just looked at each other and smiled. From the mouth of babes...Maybe we ought to start asking the kids how to run the country. Hugs from Heaven, Tana

Cooper(Scooby Doo) and Kaydee (Josephina-The American Girl Doll)

The gang trick or treating.

Kensley's Harvest Outfit.

My how we've grown! 11/02/08

Kensley is weighing in at 14lbs and 3 oz. now. This is amazing and wonderful and miraculous. God is good. We are even beginning to worry that she is gaining too much weight. I never dreamed that would be my problem. Her labs remained good, almost totally normal! We have had an amazing 3 weeks at home, and I feel that we have settled into being a family again. Kaydee and Cooper are doing great also (all A's on the report cards). Kensley just loves them. They are her favorite people in the world. It is so beautiful. Here are some pics to enjoy. Hugs from Tana.

(Our First Trip to Church)

(Stylin' with Mom)

What happens to the day 10/31/08

The only chance I get to blog is when everyone else is asleep and all the other chores are done, which is usually around 11pm or 11:30pm. I have notice that these late blogs are getting sloppy. Sorry that I am leaving out words here or there or just plain blowing the grammar test. I am simply tired. J. travels a lot with his job, so I have done the baby nurse, mommy, taxi driver, tutor, baker, seamstress thing alone for about two weeks. I am starting to get a little frazzled. Don't worry though, I planning on scheduling a break soon (even if it is only for a couple of hours). The good news is that I have shown myself that I CAN DO IT. With the help of the Lord, I am making it. Kensley is getting all of her infusions and tubes taken care of. The kids are getting homework done and to school on time. I have taken the kids to dentist appointments, dance class, and birthday parties. I am making caramel apples, costumes, and other special projects. I can not possibly keep this up forever, but I am surviving. After all, it is just mommy duty with the extra nurse duties thrown in. Most all moms have to do as much(and they say Sarah Palin isn't qualified) J. has been working very hard too. He has a new territory and new responsibilities. So if you get a chance to pray for us, we need strength and rest and patience. Kensley needs to remain healthy and growing, and Kaydee and Cooper need peace and patience as we settle into being a family of five. As always I will be praying for you. Hugs from Heaven, Tana
Prayer requests: Please pray for little Jack as he continues to recover from being hit by a car. He is doing OK now and is expected to recover. Pray for a speedy recovery and to be home and healthy as soon as possible. I have a strong feeling that we should pray for Jack's lovely mom, Nicole. She has started a new job and this must be an especially trying time for her. Blessing to Nicole.
Pray for Caed as he remains in Omaha with his mom. He is having a much needed visit with Dad and sister right now. Pray that this time is special and meaningful, and that it will carry Caed and Lori through until they get to come home in three more weeks.
Pray that Jake continues to recover and thrive after his heart transplant. He is doing remarkably well. Pray that it continues.

Busy day 10/29/08

Things are OK here. Kensley weighed 13lbs. and 8ozs. this morning. She is stooling better (less frequent and thicker). Today I talked with our nutritionist from Nebraska. She said Kensley's labs look and that she is absorbing! Yeah! I hope everyone had a chance to read yesterday's blog. I am still asking the prayer warriors all over to pray for little Jack (2 year old hit by car), Jake (1 year old recovering well from a heart transplant), Caed (5 year old with short bowel), and Kensley (my 6month old with short bowel). I am soooo tired tonight that I don't think I can last much longer. Today was the usual - two kids off to school, change diapers repeatedly, feed Kensley repeatedly, mix and administer TPN and NG feedings, make formula, get everyone from school, homework, wash bottles, wash baby clothes, wash all other clothes, wash one load of dishes, carry out trash (a must with dirty diapers)- but we added in 2 dentist appointment, a Harvest Festival, and making 6 candy apples for Kaydee's student council fundraiser. No wonder I'm so fat and out of shape. The stress, lack of sleep and time crunch have really gotten to me. So many people have asked me what I need.... Well, I need two more hours in the day so that I could actually get a nap. I need another set of arms attached to my body so that I could clean house while holding Kensley, and I need a live in Lady's Maid(like they had in Victorian times) that would tend to all my clothes, fix my hair, and help you get dressed every morning. I also need the trainers from the TV show: The Biggest Loser, and let's add in another 2 hours in the day so that I could actually workout! Don't get me wrong, sleep or no sleep, fat or skinny, I am still loving life and grateful for the blessing God has given me. Good night and God bless you all! Hugs from Heaven, Tana

PS. READ YESTERDAY'S BLOG for more info on Prayer requests.

When Thing get Tough, We get to Prayin' 10/28/08

Today was Kensley's 6 month birthday and she weighed 13lbs. and 7ozs. Yeah! This is more than double her birth weight. So keep up the prayers. They are working and they are still needed.


This is Jake...



If there is a cuter cowboy out there, I haven't met him! It is hard to believe that he just received a heart transplant. His parents tell me that he is walking and playing and eating and doing all the things that an adorable little one year old should do. Keep up the good work, Jake. We will keep praying. It is working!

Continue to pray for Caed. He is recovering from a stomach bug, which is very hard on short bowel kids. But, he is recovering and he is in the right place. Pray for his continued healing and for his family as they, like J., Kaydee, Cooper and I, learn to live with this chronic condition and cope with making it "normal" and healthy for our entire family.

Now I need to ask you for more prayers. Today, I received a call that almost stopped my heart. My dear friends, Ty and Nicole are the wonderful and proud parents of two handsome little boys, Luke who is in first grade, and Jack who is 2 years old. Well, Monday around noon, Jack was ran over by a car. He was at the babysitter and on a tricycle. Miraculously, it appears that Jack is going to recover. He has a broken collar bone and femur, as well as a fractured above his ear, but no life threatening or altering injuries. He is so cute and sweet. I cried to even think about him hurting. He is a tough one, and he will recover, but the stress and worry has been very hard on his parents, and a two year old in the hospital is never an easy thing. So, pray that his injuries heal quickly and well, and pray that his parents and Luke will be surrounded by the peace of our Lord, Jesus Christ. Also, I think we should all praise God that He sent his angels to protect little Jack. This could have been a very tragic situation. One day it will be a distant memory and a few more grey hairs on Nicole and Ty's head, but I know that God will use it to minister to other of His miraculous love and protection.
Hugs from Heaven, Tana

6 Months and Counting 10/26/08

On Tuesday, October 28th, Kensley will be 6 months old. There was a time when I feared we would never get here. I prayed and prayed. I asked Jesus to heal our precious little baby. I cried out to God in the name of Jesus. I did it all! And I tried to have COMPLETE faith. But, I am human. My faith was as complete as my human self would let it. My faith has always been there, sometimes big and sometimes small. I have always kept this feeling that somehow it was going to be alright, no matter how many doubts would go through my mind. Now, don't get me wrong. We are not out of the woods yet. Unfortunately, the woods will last for years, but when I started the journey, I wasn't even sure that I could stay of the path, much less make through the woods. Around every corner there was another wolf waiting to nip at our heals. But, as you can see...
Little pink riding hood has not been worried. All she knows is that she is happy and playing. Every day she rolls and scoots on her back more. She loves to eat and grow. Her favorite playthings are Kaydee and Cooper, and life is just fine! And she is right! For now, it is enough to celebrate being 6 months old, happy and thriving. She loves and laughs and brings such joy to our family every moment, that we find it hard not to celebrate each day. There are challenges ahead and this is a very hard thing to do, but so is having cancer or losing a loved one or being unemployed or having an addiction. The list could go on and on. Jesus did not do all that he did so that we would fail and let trials and challenges defeat us. He didn't even let death defeat Him. So, rejoice in the little moments of victory, pray through the moments of mistake and failure, and smile for God is with you every moment. Read Act 3:1-16, and remember nothing can keep you down when you have the power of Jesus on your side. Hugs from Heaven, Tana
Prayer requests:
I got the most wonderful picture of Jake today. He is sooooo cute! He is making remarkable progress and recovering so well from his heart transplant. Praise God for big wonderful miracles. Caed and his family are just great people who have gone through a huge challenge. I have come to love them and wish great blessing for them. I know God have good things in store for them. Their faith will carry them through this, but we need always to go to God on their behalf for strength and encouragement. I ask that everyone pray that Caed's recovery be as quick as possible. I ask that everyone prays for T-ball. Caed is just a wonderful little boy who likes to wonderful little boy things, like play T-ball. Next summer would be his first year of T-ball,so pray that he gets his chance. Pray that if he is still on some sort of feeding or fluid therapy through his central line or G-tube, it will be only at night and he will still get to participate. God gives us our dreams and He wants them to come true. I pray in the name of Jesus that this one comes true for Caed.
Pray that Kensley continues to progress, gain, and thrive, and that we avoid sickness through her first year. This will greatly increase her chances for a normal life.
Pray for all moms who have to be nurses too. It is hard enough to be a mom, but when you add the tasks of a nurse, it can be very overwhelming.

A Trip to Jerusalem 10/26/08

The other night I got to read a book to Cooper before he fell asleep. It was a children's book about Easter and Jesus. AND, my precious 6 year old said, "Mom, I want to go there." He wanted to go to Jerusalem and Bethlehem to see where Jesus was on earth. I ask him if he wanted to go to Disney Land instead and he said, "Yeah sure, but I want to go to Jerusalem first." Wow! I love that my children are learning about God and loving Jesus. Of course he still doesn't want to be baptised. The thought of someone deliberately pushing him underwater is a bit scary. I told him that one day he might change him mind. As many of you know life has not been what you would call easy for the past 7 months (and Kensley is only 5 months), but I have kept my faith (sometimes by the skin of my teeth). I just have this deep down feeling that no matter what life throws, God is there to catch you and IT! So, if you are facing something that seems like to much, throw it over to God. He has a better catcher mitt than you.
UPDATE: Kensley is up to 13 lbs and 5 ozs. Praise the Lord. Hugs from Heaven, Tana

13 pounds and 2 ounces! 10/23/08

We did it! For a day anyway, Kensley weighed 13 pounds and 2 ounces, which is more than double her birth weight. Praise be to God. Of course she may fluctuate back down within the next few days, but I was very excited considering the day I had yesterday. Kensley played and smiled and was happy all day today. She had a good day, but she did stool more loosely and more frequently today. I think this is just going to be a way of life for a while. Thankfully J. is home safe. Kaydee and Cooper are excited because Daddy is taking them on an Indian Campers Camp out to Roaring Springs this weekend. They have been sooooo great this week by helping out and keeping their rooms tidy. I am very proud of them and thank God that he blessed me with such wonderful little souls to make my days wonderful even when they are hectic. I had the pleasure of making lunch for my dear friend Mitzi today (a belated birthday lunch). It made me reflect on something I read once (I can't remember where): God uses people to wipe the tears of those who hurt. Although there were no tears today, I want to thank all of you, my friends, who have wiped my tears through your notes and responses and cards and hugs and smiles. All these things you have given me in love. I can not thank you enough, but I am so glad God used you. Hugs from Heaven, Tana

One ounce! 10/22/08

Today Kensley weighed 12lbs. and 15 oz. Just one ounce away from doubling her birth weight. She has been happy and playing today, which is amazing after the morning we had. We started the morning at 5:30am when she again decided to yank the NG feeding tube out of her nose. You would think that some one so small could not be that quick, BUT SHE IS! One second I am changing her diaper the next she had the tube in her hand. This is not a major problem usually because I am used to re-inserting it, but today I was all alone. J. is in California. Well, I managed to reinsert the thing and then check for placement. All went well, until 6:30am. Kensley has a central line that is dressed under a clear plastic bandage called a tegaderm. I change the dressing every Friday with J.'s help to hold her still. This is a very serious procedure because the line goes directly into the vein near Kensley's heart. SOOOOO I have to use extreme sterile technique in changing the dressing. Well, after the change Kensley scratches at the site. The alcohol swabs and chloraprep really dry the skin in addition to the adhesive from the tegaderm. At 6:30 I started changing Kensley's clothes and quick as a wink she reached up to scratch at the central line site, caught hold of the edge and ripped it right off. I screamed NOOO and scared her half to death, she started crying, I had no help, the kids were still in bed. I quickly calmed down and while holding her hands so that she would not pull the line out entirely, I swaddled her arms, yelled until the kids woke up, and began another dressing change. Thank God for Kaydee, who distracted Kensley so that she wouldn't breath on the site (yes, it is that serious) as I changed the dressing. We managed, and Kensley appears to be no worse for wear. Then I got the kids fed, dressed and off to school, and I came home fed Kensley at 9am. She went to sleep and I washed the dishes and cried. I cried and cried. Will this ever end? Will I be able to keep her healthy? Will she truly have a chance at a normal life? Will I ever not be afraid? I cried out to God and offered my tears up as a sacrifice. Luckily, Kensley's dietitian called from Omaha today. As usual, God knows what I need and provides it. She said the labs were great and that Kensley is doing well. She also answered a lot of my questions and found some suggestions to help with Kensley's sensitive skin and the dressing change. We also talked about Kensley's near future and what to expect by way of eating, weening the TPN, and the NG tube. She made me feel good about Kensley's prognosis. She can do this. She is doing it! Then tonight, again I went to God's word and He lead me to Psalm 126: "Those who sow in tears will reap with songs of joy. He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him." I am doing my best to grow a healthy, happy little baby girl, sometime with tears and sometimes with songs of joy. There are some very scary things that could happen, but everyday is a day closer to being 5 years old, lined up with her kindergarten classmates, with no tubes and no feeding back pack. Today is just that day when my faith was stretched and came a lot closer to mustard seed size than mountain size, so I need the faith of my friends and family to fill in the gap. Keep praying for Kensley. God works through prayer. Hugs from Heaven, Tana
Pray request: Pray for Kensley, Caed, Jake. Pray for children and teachers, doctors and nurses, mothers and fathers. Pray for the upcoming election. I think we could all use a little prayer time.

Thanks for the Lemonade 10/21/08

I am a Chris Rice fan. For those of you who do not know him, he is a christian music artist. Well, he wrote and recorded a song called, Thanks for the Lemonade. It is a play on the 'If life gives you lemons, make lemonade' saying. Sometimes it is easier to see the lemon and not the lemonade. I was recently talking to a lady in her 70's. She was lamenting over all the things that she had not done in her life, such as snow skiing or white water rafting or going to see Mt. Rushmore. She was truly ranking her life as all lemons, even though God had blessed her with the love of her life for 49 years and 4 grown independent healthy children (which is a miracle in itself) If you look at my life right now, you might think that I received some pretty big lemons, and sometimes I might feel that way too. But in my car with this song playing in the CD player, I listened to Kaydee and Cooper sing the words at the top of their lungs as Kensley laughed at them. I smiled and thanked God for the lemonade. It is pretty sweet. Hugs from Heaven, Tana
Prayer requests: Kensley did not gain any weight this morning and we still need 3 more ounces. She is also stooling looser and more frequently today. Pray for thickness and fewer stools.
Caed has his sister with him for a while, what a praise! Continue to pray that he makes progress and that his time in NE will productive and fast!
Pray for J. as he travels.

Just three more ounces! 10-20-08

Just three more ounces and Kensley will double her birth weight before her 6th month birthday. Pray for us! Kensley is doing well. We even attended church on Sunday. I was a nervous wreck the whole time. I just don't want Kensley to get sick and of course so many people wanted to get up close to her. It was hard to isolate her, but most everyone was very understanding and kept their distance. Today was her lab draw and we will find out the result late tomorrow or Wednesday. She is happy and playing and seems great. Kaydee and Cooper have been great too! They are helping out with all the extra work load without complaint, well with little complaint. God is good. Have a great day and keep praying! Hugs from Heaven, Tana

Climbing Mount Laundry

Home again and climbing the great mountain range known as Mt. Laundry. It seems to grow bigger every day and sprout satellite hills in each bedroom. Some of the hills consist of clean clothes that have been taken out of the dryer, but not folded or put away. Some of the hills consist of dirty clothes sorted into the correct color combination for the washer. About the time I get one washed and put away, another grows. Mt. Baby Laundry is a daily climb with special detergent! I am sure some of you are thinking back to the time when your children were small, and the daily tasks seemed overwhelming. Well, sometimes they just are! You have to take care of the big rocks and let the little ones lie. There is an old saying that goes, 'If you want to visit, come on over. If you want to visit my house, make an appointment'. In the midst of overwhelming daily grind, a clean house becomes a very little rock. So, I am sending out a prayer for all the mothers of infants and little ones. We just have to hang in there. It will be easier someday and all the hardship will be rewarded. Even Kensley with all her extra feedings, and diapers and supplements and special schedules is getting easier to take care of (or I'm just getting used to it). It is no secret that this has not been the easiest year of my life, but after a trial God loves to bless you when you keep the faith and keep praising Him. And... just to give me a little hope boost, the Lord led me to Isaiah 61 (The Year of the Lord's Favor). If you need a little hope, read the chapter and claim your crown of beauty instead of ashes. The Lord knows I need it. Like many of you, I am tired, nervous, rushed and overwhelmed (not to mention my personal over scheduled and over weight problems) All these things added to Mt. Laundry can wreck havoc on your peace and self esteem. Well, no more! I am claiming my crown of beauty, throwing out the ashes and counting my blessings now. J. has continued to be my partner in all of this. He supports and loves and tells me each day (even though it is a blatant lie) that I am beautiful. Kensley grows and laughs and plays and tries to make things as normal as she can for Mommy, and Kaydee and Cooper make me laugh everyday. It is going to be a great year-No matter who is president! Hugs from Heaven, Tana
Prayer requests: For Kensley to remain as healthy as possible and to continue to grow.
For Caed to continue to make progress and for the doctors to make the right decisions for his case.
For Jake to continue to get stronger.
For churches and pastors and church leadership to stay true to the Bible and create a Biblical world view and not a world altered Bible view.
For all of you, who encourage and love and remain the hands and feet of Jesus on earth.

Home Busy Home

I am home again and things are going very well and very busy. I took the kids to school on Friday and attended Cooper's field trip to the Corn Maze, helped with homework, packed lunches, got dance outfit together, cleaned house, unpacked most of the things we took to Omaha, made appointments for Kensley, washed bottles, changed diapers again and again and again, read stories to Cooper, tucked Kaydee into bed, AND wondered how I was going to continue this schedule until Kensley is a year old. I forgot to eat on Friday until it was dinner time. My back has been hurting and I have had a headache on and off for two days. Personally, I couldn't be happier. Home is home. It is often a hectic place, but for some unknown reason it is a place a rest. Your heart rests where it is loved. My heart rests at home. Now my body is a different story-no rest there.
Kensley made the transition well. She has gained to 12lbs. and 5oz. Her stools are better, not great, but better. She is trying to roll over and she grabs and hold on to everything, including her nasal feeding tube and central line. This is the greatest problem. If she can get her hands on those tubes, she yanks them hard. The nasal tube has come out twice and I have had to re-insert it. She grabbed the central line so hard that the dressing had to be changed. But what can you do. Kensley, just like any normal active healthy little baby, is playing and rolling from side to side (she rolled over to her stomach one time, but hasn't tried again) and she is trying to cut her first two bottom teeth. She is eating rice cereal twice a day and the doctors say that she can try other baby foods at 6 months. Wow! It was a dream and a prayer that got us this far. We still have a long way to go, but I am going to keep dreaming and praying and the Lord will see my through. Some day Kensley will not have a central line or nasal tube, and I won't have to mix and administer medicine morning and night. That is my dream. You know, God gives everyone those dreams. The ones you want sooooo much, but never think can happen. Maybe it is for a new house, and a better job, a college degree, or maybe you want to start your own business. Whatever the dream, Hold on to it, ask God for help and trust Jesus to go with you on your journey. Hugs from Heaven, Tana
Prayer requests:
Jake is doing well, improving and healing everyday. Pray that he may continue to improve and go home sooner rather than later. Caed had a small bowel series, which we hope will indicate adaption of the intestine. Pray for wisdom and understanding for his doctors and parents. Kensley is still gaining and growing, but her stools remain sometime loose and liquid. Pray for continue growth and thicker stools.
Pray without ceasing for each other.

Heading Home 10/06/08

Well, Kensley and I will be headed home soon. We will have one more doctor's visit and then we travel home later this week. J. arrived safely on Saturday. It is so nice to just sit and talk. We have laughed and had a great time. We also tallied Kensley's progress during our 6 week stay here in Omaha. She has gained almost 4lbs, and grown 2 inches taller. It is amazing. If she continues this progress, she will be on track to double her birth weight by 6 months (just like a baby without complications!) We will have to travel back to Omaha in about 6 weeks for another doctor's appointment, but I don't mind. I have come to trust this team of doctors and nurses. I will be glad to see them again. I will probably not get to blog until Wednesday or Thursday, so I wish all of you a blessed Tuesday. I will be praying for you, please pray for Kensley. Hugs from Heaven, Tana

Saturday Night in Nebraska 10/4/08

Hello, I'm finally back on line. I am using a local wireless signal, but it is just an unsecured network that I can randomly log on to, soooo... sometimes it just won't let me on. I am sorry to all those who check this site daily. Don't stop! But please accept my apologies for the skipped days. They are beyond my control.

Today, J. arrived to spend the last week in Omaha with me. Yes, I said last week. I should be home by the 11th of October. I can not believe that we have been here 6 weeks. It really went by fast. Kensley started this adventure at 8lbs 9oz on August 31st and today she weighs 11lbs 8oz (that is basically 3lbs in 6weeks). She has also grown 2 inches longer, and her head circumference has gone from 39cm to 42cm. Wow! She is on the growth chart in weight (barely at the 5% weight, 20% and 25% on height and head respectively). This has really been a blessing for us, and our time is not truly over. We will return in 6weeks for our first out-patient appointment. All of our daily care will be ordered by the doctors here in Nebraska but go through our GI doctor in Lubbock. We will be e-mailing back and forth daily chart sheets and we will have a weekly conference call with our nurse coordinator. I will admit that I am a little nervous about going home, but the doctors have confidence in our abilities to monitor and take care of Kensley's needs. With that and God, we will be alright. Kensley has still been having watery stools, but the number has gone down. All I can do is pray for thicker and fewer stools. I never in my life thought I would be praying about poop! Well, poop is a major concern in my life now. It takes up quite a lot of my thoughts, prayers, and time. Yes, God does have a sense of humor. Let's face it, people are funny, and if we are made in God image then it is easy to see why a good laugh is a blessing from God. So remember to laugh today. It just might be a hug from Heaven, Tana

Prayer Requests:

Praise be to God, Caed and Jake seem to be doing better. Caed has gained some weight. Jake is eating playing and there is talk of him being home by Christmas (Wow, after a heart transplant). Keep them in your prayers, pray without ceasing!

Pray for Kensley. She is stooling a bit too much and too loosely. Pray that her stools slow down and thicken.

Pray for a special American family in Germany. They are a sweet family with 5 children, 4 of which are under 4 years of age. One has celrebral palsy. They are having financial difficulty due the medical issues. I know it must be hard to be so far from home, with no family, and little support.

Blessings to all of you.

I have always loved Scooby Doo 10-1-08

God gave me Cooper Free, Scooby Doo's #1 fan, for a reason. As a kid, I loved all things Scooby Doo. Of course, I wanted to be Daphne, but I solved mysteries and tried to get my dog Tip to talk all the time. Sometime I just knew he understood what I was saying. Well, Cooper is an even greater Scooby Doo fan than I. He would watch Scooby movies and cartoons all day if I let him. So, just yesterday, as Kensley slept I flip through the channels and found none other than Scooby Doo. I watched and pretended that Cooper was with me. I thought about my children, all three of them. There are so many things that I love about just spending time with them. Hugging Cooper tight as he pretends to be scared about some Scooby mystery that he has seen 100 times. Talking quietly just before bedtime with Kaydee about her day and her concerns and her joys, as I run my fingers through her hair. Holding Kensley against my chest as she falls to sleep hearing my heart beat. All these things remind me to love all of life, good and bad. Children touch our lives and make our moments worth living. They give us honesty when no one else will and they just want love and time. No wonder God tells us to like children (Matthew 18:3-4). So, today I encourage you to hug and hold your children no matter their age, talk to them, love them, play with them, and LEARN from them. Hugs from Heaven, Tana
Prayer requests:
Kensley is still stooling too loosely. She has gone through several feeding changes and they always make her stools loose. It is my prayer that her stools thicken up, so that she absorbs more nutrients and water from the food she eats.
Caed seems to be gaining weight. My prayer is that he continues to gains and feel better everyday. I also pray that his intestine continues to adapt and grow everyday.
Jake has received his miracle heart and is still recovering. This is a very critical time, and although the reports I have received say that he is doing well, I pray for a hedge of protection around Jake and his family as they go through this time.
I also pray for all who read this blog and who pray with me and support my family everyday. You are a blessing to my life and I could not go on without you. May God bless you and Jesus walk beside you.

Happy Monday 9/29/08

Today was lab day. Kensley's labs looked good. And, for all of you who were praying we me, God is good. Her stools have looked better today than they have in several days. She is napping well and eating well too. So we will see how today turns out. Tomorrow is Clinic day! This journey that I am traveling with Kensley is so consuming. I am not even sure that is the right word. There are times of heartbreak, joy, fear, frustration, triumph and defeat. Sometimes I can not image being able to handle all that this chronic condition will require. Sometimes I just want God to miraculously fix Kensley. Sometimes I just want to go back in time and erase it or fix it or something. I can not do anything to change our situation, our journey. The question is where will our journey lead, what will it teach us, how will it touch others. I am often overwhelmed by the daily needs of this condition. The medicine, the tubes, the limited feedings sometimes get to me. All I know is that I love this little girl and I hope she can overcome these trials. Praise God, HOPE, hope always gets to me. It is all I have. "(Love) always protects, always trusts, always hopes, always perseveres...And these three remain: faith, hope and love. But the greatest of these is love." So, here I am. I hope that I can encourage you to love and have faith that God will see you through. Hugs from Heaven, Tana

Good and Bad Days 9/28/08

Today is Kensley's 5th month birthday. She is officially 5 months old. She really looks great and things have been going well. The doctors told me that there would be good days and bad days, and plateaus. I wouldn't call this a bad day, but maybe a mediocre day. The day started out OK. Kensley has been stooling a bit more lately and they have been more loose and liquid than I like. She has still been gaining weight, but today she put more out than she took in. Tomorrow (Monday) we have labs drawn and I will have to have the NG tube re-inserted. The one that the home health nurse put in is too short. It is placed correctly, but the part that extends out of the nose does not hang down long enough so that Kensley can not roll on it or pull it out. But you know I feel like tomorrow is going to be a good day. Why? Because God is already there. I am going to pray right now. I am going to call upon my Father God, the great creator and wonderful provider. I am going to pray for all those I know of that need the help of God and I am going to ask for Kensley to be healed and for her stools to slow down and thicken. And then I am going to believe that it will happen. It will happen. I will not let the bad days or the bumps rattle my faith. Two of my favorite movies are "Father of the Bride" and "Father of the Bride II". While Kensley was in the NICU and everyone told me that she would not make and if she did she would not have much of a life, on the few times that I got to go home for a shower, I would drive by a house that reminded me of the "Father of the Bride" house. This house is as picture perfect as the house in the movie where the wedding was held. Well, I would drive by that house and say to myself that I would see Kensley grown and Kensley married. I would dance at her reception. It was my image of faith. I can picture her wedding now. I will see it. I am believing for it. What are you going to believe? If seeing is believing, then start seeing. Put that image in your mind and start believing. Believe with me and we will see miracles happen. Hugs from Heaven, Tana
Prayers: Kensley, Caed, Jake, Mellisa, Lee, Laura, J., Kaydee, Cooper and all the un-named people that need the special hand of God in their lives tonight. And if you don't mind pray for me and I will be praying for you. I need all the help I can get.

Say God Bless you! 9-26-08

As I set here writing, my nose is dripping! Pretty image right. Yes, I guess I have a cold. No fever, but I feel rotten, and my nose is running off my face. Needless to say, today has been a hard day. Besides being sick, Kensley had to have her NG (nasal gastro-intestial) tube changed today and her central line dressing. The wonderful thing is that today we had Beverly the NICU nurse as her home health nurse. She is really great. I didn't get much sleep last night, you see Kensley decided about 4am that she didn't want the NG tube in her nose anymore, so she yanked it out. This was OK because it had to be changed anyway. You should have seen her smile. The home health nurse didn't get here until 10:30a so I took some pictures without the tape and tube. It was so wonderful to she her face. I cried over the fact that I don't get to see her face uncovered everyday, but I know that God will someday give us that chance. Enjoy this face, it is the reason I get up each morning healthy or sick. Hugs from Heaven, Tana

Neat Freak 9/25/08

My husband can be a bit of a neat freak. He rants and raves at the kids to clean their rooms and toys. This worries me, because it is difficult enough to keep the house tidy with a 6 year old and a 10 year old, much less a special needs infant. Trying to keep your house perfect can put a lot of stress on a person, and I don't know if I can handle it and Kensley and Kaydee and Cooper. The point of this story can be summed up with some thing one my angels wrote to me. "Remember to get some rest and lay it down for God to pick up." I think my friend may have figured it out. Some things in life are more important than perfectly tidy houses, or perfectly coiffured hair, or perfectly fancy clothes. Sure, every one of us should strive to keep things tidy and clean, "cleanliness is next to Godliness". But loving, playing, and spending time with your husband and children is and always will be more important. So, instead of picking up stress and worry, remember to "lay it down and let God pick it up." No one on earth is perfect, but God loves us perfectly no matter what flaws we have. Hugs from Heaven, Tana
Prayer Requests:
Pray for Jake who made it through his transplant surgery very well. He is making a remarkable recovery, which tells me that God had a plan for this little boy. Praise Him and pray that Jake continues to make strives. Pray for Caed so that the doctors may find a solution to his stooling issues. Caed is such a wonderful little boy. His personality makes anyone who meets him fall in love. He may be a little boy, but he has a great big voice that will one day tell a great big story of healing to the glory of Jesus. Please continue to pray for Kensley. She has been stooling more with more liquid stools. This is not good. She needs to start absorbing more and pooping less with thicker stools. As always, I pray for blessing to all of you. I know that God is listening and that the love that passes through this small part of cyberspace makes Him smile.

Feeling the Pressure 9/24/08

Well, as J. and I discussed the Omaha exit strategy, I could tell he was beginning to feel the pressure. J. has new territory responsibilities now that his company and another have merged. It is a good thing, because there were several people who were offered a severance package and not a job, but now he will have to learn a new territory. Luckily most of the customers are acquaintances and well known to J. So, the pressure list begins with job pressure. Then add to that pressure the fact that we have to bring Kensley home away from her team of doctors. Plus, every time that we bring her back and forth to Omaha she loses several ounces and feels bad for two days. I think we will have to discuss with the doctors the long distance appointments and J. needs a more exact schedule so that he can plan his business trips around the appointments if possible. As hard as it is for me to feel so separated and left out of Kaydee's and Cooper's lives, it is also hard for J. to feel so left out and separated from Kensley's care. I guess this is one of those times that we have to remember to pray for every little decision and every little step that we make. I need more patience and understanding and decisions that are not only kind and loving but logical and efficient. No pressure there! The simple truth is that THIS IS HARD. The expense, the separation, the many decisions all wreak havoc on our lives. So now it is a time for a breather, a moment of silence, or another way of putting it...TIME TO LET GOD IN. Try reading Proverbs 3:5-6. So, through it all I feel God's hand on my back supporting and pushing me through. Sometimes I get a little depressed about how far we have to go, and I forget how far we have come. Thank you God for the road we have already travel and for teaching me so much about myself, my husband, my children and you. Hugs from Heaven, Tana
Prayer requests:
Pray for Kensley, Caed, and Jake. Pray for everyone who is cleaning up after hurricane Ike. Pray for J. and I as we make the transition back to Lubbock. Blessing to all who read this.

The Sun is Shining 9/23/08

It is Tuesday, doctor day, and it is a good day. Kensley had a good appointment. Her labs look good and she had gained to 10 pounds and 14 ounces. We will be making lots of changes this week in Kensley's tube feedings and bottle feedings and TPN. she remains a ray of sunshine on rainy days. Gosh I love her. Baby love is one of the best feelings that God has ever given me. I guess today I'm just a big pile of love. I hope that everyone who reads this feels the love today. Hug someone close to you, forgive someone for whatever mistake they may have made, just love someone today. It is always worth it. We may get to come home around the 11th of October, but we will have to travel to Omaha once a month for a while. If we don't have any complications and all goes well, we will get to manage Kensley's case from Lubbock. So, pray for us, because at home there will be lots of distractions and in Omaha it has all been about Kensley. I hope she takes the change well. For now we will keep praying for progress and for blessings to all of you. Hugs from Heaven, Tana
Prayer requests:
Continued progress for Kensley, Caed, and Jake.

Monday Morning 9/22/08

I did not get to blog yesterday. I took J. and the kids to the airport at 7:00am and cried until noon. I just couldn't help it. I missed them so much, but I know that Kensley is improving. She had been pooping a little too much, so please pray for her to slow down. Every time we make a formula change she has to adjust to it. She weighs 10 pounds and 9 ounces and has remained there for three days. This is a big change for me because she has been gaining weight every night. I hope we have not reached a plateau yet. The doctors tell me that while on the IRP program we will reach plateaus and have to make changes at that time to keep growing. I was worried that the family visit this weekend was too much for her, but so far her labs look OK. The fact is that this a a chronic condition and we will live with this for the rest of our lives. Now having vented all my worries, let me tell you this. Worrying is a part of the human experience. We all do it, mostly over things that we can not change or fix or handle. Some people even let worry turn into fear which leads to regret. They worry so much that they fear doing something, so they do nothing, and regret it for the rest of their lives. Every morning I pray for Kensley, some times with tears and worry in my voice. Then I say the words, "It is in your hands Lord, and I trust you." Some times I think I am just giving those words lip service. After all what could be harder, but I know that trusting the Lord is the only thing getting us through this. Maybe those last words really do the trick, I TRUST YOU. 'In God We Trust' is even on U.S. currency. If you truly trust someone, can you really fear and worry? No. So, here I am in Omaha Nebraska missing my husband and Kaydee and Cooper, knowing that my home and kids will have to go through grandparent withdrawal once I get back, knowing that I am only taking the first of many steps and trails with Kensley, but trusting. Trusting that my children are in good hands at home and here because God is guiding us all. I can do all things with Christ who strengthens me (Philippians 4:13) So, if you are worried about something, or afraid to do something, just trust Him and go forward. Sometimes you have to walk the walk to understand the talk. Hugs from Heaven, Tana
Prayer requests:
Please pray for my mom and my mom-in-law and dad-in-law as they have given up quite a lot of their time and life to help our family go through this. Please pray for Kensley that she might continue to adapt and absorb with fewer and fewer stools. Please pray for Caed who is dealing with a bacterial overgrowth in his intestine. We pray that the antibiotic therapy will be successful in dealing with this issue and he will no longer have diarrhea. Please pray and praise God for the blessing of a new baby for my friends Gery and Julie. They are wonderful people and will make wonderful parents some time in March 2009. Praise God for Jake and pray for his continued recovery from a heart transplant. Pray for doctors that do their job, not for money or prestige, but for the love of helping people.