But I Don't Want Manna! 1/27/09

Meeting with Doctor Mercer

Daddy & Kensley

Having Fun in the Snow

Update: Today Kensley weighs 17lbs and 15ozs. She is feeling great and sleeping great, playing and trying desperately to crawl. She is on an even lighter version of TPN that has very little protein and nothing else but fluids. We are working on increasing her NG tube feeding by a ml a day, and working on taking more solids as well as drinking an electrolyte replacement drink through a sippy cup. The appointment in Omaha went great and we hope to have her off TPN by Spring Break when we return to Omaha. There is a strong possibility that she will have her NG tube (a tube that goes through the nostril and into the stomach) will be replaced by a G-tube (a tube that goes directly into the stomach via an incision). Hopefully we will have her central line out by April. This will allow us to have the option of central line fluids during the cold, flu, and stomach virus season(January-March). However, her central line has been in for six months and it is starting to be more difficult to obtain blood draws from it. So, if you have time to remember us in your prayers, pray for the central line to continue to function until we can remove it.

Now for the Manna part. I mentioned in my last BLOG that I have really been expecting a break through or turning point to happen around the time Kensley turns 9 months. Well, this is the story...

While, Kensley and I were in the hospital in July 2008, J. came to relieve me and I went to pray in the Chapel. I prayed for a while and cried for a while and then I heard something. It was a distinct voice, so shocking that I turned around to see who had come into the Chapel, but there was no one there, only me. I was there alone the whole time. AND, I did hear that voice. '9 months' were the words that I heard. I heard them three times. Some of you may not believe that God can speak to you in that way, but I felt the words in my heart also. So, here we are almost at 9 months. Now I don't know if something is supposed to happen now or within the next few weeks, but I just know that it is supposed to happen. Well, while we were in Omaha, the doctors did tell us a very important thing, even a miraculous thing: Kensley should never be a transplant candidate. This is wonderful, but was this the thing that was supposed to happen at 9 months? I should be elated. This wonderful news, because transplants are very dangerous. This should be like manna from Heaven, and it was. Only I did not want manna. I wanted something even more. I guess I really wanted something almost impossible to have, a complete reversal of her condition, or to be like it never even happened. What I wanted was not God's miracle, but my own. It is just like the Israelites who wandered in the desert for 40 years. They cried out to God for food and He gave them manna, but soon they became fickle and said no more manna, we want meat. They were not satisfied with God's miracle and started calling for their own (Exodus, Chapter 16). It sounds pretty selfish doesn't it? To scorn God's miracle? But I understand and all I can say is that I am human and impatient, but that is the way God made me. All I can do is try to do better to wait upon the Lord remembering that His plan is better than my own. Dear Lord, I ask your forgiveness and your help as I try to become the woman you want me to be. Give us all the patience we need to travel this world waiting upon your miracles and not our own. After all, you are the mighty physician and 9 months isn't over yet. Hugs from Heaven, Tana

A Stranger's Prayer 1/25/09

It has been a long time since my last blog. Time has really gotten away from us, but I had to share this God moment with all of you. J., Kensley and I traveled to Omaha on Monday, January 19th. We flew for the first time. I was nervous about how Kensley would handle the flight, but she did great. She slept most of the time and was happy and playing the rest of the time. It was a blessing. She recovered from all of her illnesses and teething and such by the time we left for Omaha, so all was good. I remember feeling anxious about the appointments. I don't really know why. I think it is because I have really been expecting a turning point or break through when Kensley is around 9 months (This is another story). So anyway, we made it through our first flight to Dallas. Then we made it to Omaha. As soon as we got off the plane we were heading to the hospital to have labs drawn. As we got off the plane, we stopped to pick up our carseat and stroller which were gate checked. There was a pilot there waiting to get on the plane. He noticed Kensley's NG tube and asked J. why we were coming to Omaha. J. explained and the man immediately asked if he could pray for her. I was so touched. There we were with a complete stranger calling on the name of Jesus to heal our little girl. I don't know how many times I have said that same prayer, but to have a complete stranger pray those same words. I can not describe what I felt or what it meant to me. It was as if God was saying. I am here. I am listening. I will never leave you. He was just using a complete stranger to do it. So, if you have that overwhelming urge to pray for some one, JUST DO IT. You may never know how much they need it. Hugs from Heaven, Tana

Listening, Waiting and Praying 1/10/09

Well our trial continues. Kensley is back on a slight version of TPN. This is of course the one thing that we did not want, but if it helps her recover from the virus and the teething and the growth spurt, then we will do what we must. (Definition-IV fluid become TPN when nutritional elements are added to normal fluid, such as protein, vitamins, etc. ) Our TPN has a little protein because Kensley has to go off of tube feeds to stop stooling and throwing up, which is causing her to dehydrate. This TPN will last 3 days and then we will draw labs again on Monday. Pray that it works and we can go back to IV fluids soon. All of these trials have really put me to the test. You see this weekend is my in-laws 50th wedding anniversary and all the family is surprising them with a reception, all the family except Kensley and I. Because of this difficulty we could not go. I had to send Kaydee and Cooper down with my sister-in-law, and again we did not get to be a family. I cried and cried. It just got to me that once again we are separated. Then all the negative thoughts started coming, the doubt and the fear. Well, enough of that! Jesus told us to fear not and have peace, and I am calling on it. With great trials come great blessing and one day we will see those blessings. I am tired of being afraid and worrying. God is my father and He wants to give His children wonderful blessing. So I'm here and I may be here for a while longer, just staying close to home, cleaning poop, doing laundry, feeding Kensley (we haven't left the house in 3 days), but here I will be listening, waiting and praying to God. I hope you'll join me, because I know that God is working to being our family a blessing, just like he is working to bring you one also. Hugs from Heaven, Keep the faith, Tana

A Bump in the Road 1/7/09

Kensley definitely had a virus of some kind around the end of December. She also began teething and grew an inch taller. All of these things have combined to create a very bad situation. They should be normal happy things, but the stress of having all these things happen at the same time has thrown her system out of whack. She has lost from 17lbs to 16lbs and 5oz. She has been stooling too much and they are liquid. She has even been throwing up. These were all the things that lead up to us being in the hospital from July 4th to July 21st during this past summer. I did not want to be back in the hospital so I have jump on this fast. I have been in contact with Nebraska almost everyday, and we have draw several sets of labs, checked a stool sample and blood cultured the central line. Blessed be the Lord, the stool sample and blood culture came back negative for any problem. Sooooo, we are just getting dehydrated again like we did in the summer when the central line failed and we tried to go off TPN and fluids. This time we were only on fluids, but with the virus and other factors it caused us to stool too much and throw up and dehydrate. Now, we are on a bigger dose of fluids but still not TPN. Yeah! BUT, pray for us. We need to stay off TPN if at all possible and we need to absorb all the fluids we need orally. It has been so busy around here with cleaning laundry that she soils every time she poops, and bottles and house work and kids stuff and other stuff. BUT and idol mind is the devil's playground. I have complete faith that Kensley will recover soon and start gaining weight soon. God will not leave us. Neither will the work and chores, yet I know that some day we will have this fight behind us. I 'll be praying for you. Tana

New Year and New Challenges 1/4/09

I hope everyone is enjoying a great start to a great year. We are making it, but with the new year came some challenges. On the 30th and 31st of December, Kensley decided to get the stomach virus that Cooper had on the 26th and 27th. She seemed to recover, but then her front bottom teeth came through. This just added fuel to the fire. She began to stool too much and lose too much fluid. She dropped from 17lbs. to 16lbs and 7oz., and she began to look and act dehydrated in addition to being in teething pain. It has not been a great week for Kensley. BUT, as always the SON has begun to shine on us again. Today Kensley really began to get back to normal. She stooled less and more consistently. She was also her happy laughing playing self. It was so nice to see her back to normal. I hope that we will begin to regain the weight quickly.
It seems that everyone I talk to has or has recently had the stomach virus. It is really bad around here and that makes it hard to take Kensley anywhere for fear of contracting something. Right now my hands are cracked from washing and using hand santitizer so much. I think that we need one of those beautiful cleansing snow falls that covers the whole area with a clean slate and kills all the bacteria and viruses for a while, then melts within 4 days. We are lucky in Lubbock we rarely get a severe snow fall, and few are over 4 inches. Most of our snow melts within a few days too. But we haven't had one in a long times. So, my prayer is for gentle, non severe snow. And I pray that all of our hearts could be especially tuned to God this year as we face all challenges. I know that with each challenges comes a great lesson, but sometimes I'm not learning like the teacher's pet but more like the teacher's problem. BUT I'm going to keep trying. I hope you will too. Hugs from Heaven, Tana