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.