A new September

Just two short years ago, Kensley and I were living in Omaha, NE. I was desparately looking for hope. Hope that Kensley could live. I never dared to hope that things would become more normal. And yet here we are. Things are not perfect. Kensley is growing very, very very slowly, but she does seem to be growing. Her stools are very liquid most of the time, but here is the great part...Kensley is starting to potty train, and she is doing great. Most of the time she poops in the potty. This is amazing. Our house doesn't smell horrible. The carpet is not being constantly stained with leaking diapers, and our clothes are not destroyed. We actually get to do many normal things. Kensley is an active, VERY ACTIVE, two year old that is doing everything a two year old should. Playing, eating, potty training, and enjoying life. Praise be to God.

2 years 2 months and 8 days , July 6, 2010

OUR TRIP TO OMAHA, NE

2010

Picking Flowers in Kansas

Kensley's First Swim EVER!

Kids with Dad at the Park in Omaha

Choo-Choo ride at the Omaha Zoo

Omaha Zoo

Buffalo in Oklahoma

Picnic in Oklahoma


I can not tell everyone who prays for us and thinks of us and helps us, thank you enough. The past two years have not been easy, but they have been worth it. Kensley is doing great! We just got back from our annual appointment in Omaha, NE. It was great and we got a great report. No, she is not CURED, but healed. She will always have SBS (Short Bowel Syndrome), meaning that she will have more stools and be more sensitive to certain foods. There will be times of vomiting, bloating, and always diarrhea, but it looks like there will NOT be surgeries, or transplants, or central lines. Wow! I can not tell you how this makes me feel. God is good. In his providence he delivered our child, the child who was not supposed to live, or eat on her own, or grow or anything. Now she laughs and plays and runs and loves and EATS.

There are always people who ask me what I learned through all this or how my faith has grown or my life has changed. These questions are almost too complicated to answer. There are many fine points that have changed and many lessons learned and my faith has definitely evolved, but not because of Kensley's condition. These changes came because of love. The love of Jesus, the love of family, the love of friends. In spite of all the poopy diapers, and the late hours, and the days in the hospital, and the time away from my family, and the illnesses, the surgeries, the central lines, the tube feeds, the medical needs, etc, etc., there was always love poured THROUGH our tired and weary souls. So much so, that our wells never ran dry even in the worst of times. Sometimes we were close to losing our minds, and faith, and strength, but somehow we held on to each other and made it through. I found out that my husband really is a knight in shining armour. I found out that my children are amazing and worth every heartache and headache. The reward of being their mother is enough. I found out that people really care. They pray and give and pray and give some more. I found out that I can survive the worst of nightmares and that even when I want to give up, God never gives up on me. So love ....longer than you have to, deeper than you want to, and more than you think you are capable of. God will never let your well run dry either. Hugs from Heaven, Tana

A ban-aid! 3/13/10

Kensley with her Central Line

Kensley without her Central Line

Yes! A ban-aid! That is all the dressing we have. Kensley's central line is OUT! This is BIG! This is HUGE! We had this line removed yesterday, March 12th. It has been in since March 3rd, 2009, over a year. It has really grown in and there was tissue surrounding the cuff that goes into the body, but now IT IS GONE, and only a little ban-aid covers the place where it was. WOW! Kensley went 6 weeks without any fluids and she did great, so out the line came. Now we will skip labs for this coming Monday (3-15th) and have them next Monday (3-22nd). That will tell us a lot. It is just amazing to be down by one tube. Before, we had the central line which was in her chest going into a vein so that she could get fluid hydration, and the feeding tube (G-tube) which provides her with formula that goes directly into her stomach. So, now we will work on the G-tube feeds and hopefully someday that will go away too. It may be years, but we will keep holding on. Kensley has been doing really well, but she is going through a period of not wanting to eat or drink as much, just not hungry or thirsty. So her weight gain was down last week . She still eats a great breakfast of eggs and bacon, but the other meals are hit or miss. She just isn't as hungry after being on the feeding tube all day. We will keep working on increasing oral feeds and decrease the tube feeds until one day we are off the tube entirely. Kensley will be 2years next month, so there is still time before we would go to kindergarten. Preschool may not be an option, but we can hope. It would be nice for Kensley to have someone her own age to play with. There will be more updates and pictures on LubbockGrapevine.com. Become a member and keep up with the Free family there.

A new year, A new hope 2/3/10

It is a new year and here are some new pictures. Kensley has come a long way since last Christmas. She and I had only been home from our stay in Omaha for 5 weeks. At that point my Mom-in-law and Mom had spent more time in my new house than I had. Wow! what a journey this has been. I can't say that it has been fun, but now I can see all the blessings, and all the things that I have a greater appreciation for. I have learned how essential forgiveness is, forgive yourself, forgive others, forget time and enjoy moments.

"> Yes, Kensley is in the dryer. She was helping me unload the clothes and as quick as a wink she crawled in herself. So, of course I grabbed the camera. The problem is that now every time I try to unload or load the dryer, Kensley wants to get in. Not the best idea.

We were fortunate to be able to take Kaydee and Cooper to the A&M vs. TU game on Thanksgiving. It was Cooper's first time in Kyle Field and as you can see, he was wide eyed the whole night. We had a great time with the kids and racked up some great memories.

We were dreaming of a White Christmas and we got it! There was about 8 to 10" on the ground and 4 foot drifts. Of course Kensley had to have labs drawn in the ER on Christmas Eve, but we all survived and enjoyed a simple and less hectic holiday.

The snow hung around for about a week, and Kensely and the kids played outside a lot.

Although our Christmas was filled with strep and double ear infections, the weeks that followed must have been followed by a growth spurt for Kensley. She ate and ate solid food as if she was normal. It was wonderful. Unfortunately it did not last and we are going through a slow eating period now. As I understand this is very normal for Short Gut kids.

We are currently trying soooooooo hard to get off of any kind of fluid therapy. We got down to giving her 100mls over 3 hours every night, then 100mls over 3 hours every other night, and now we are cold turkey. We have not had fluid for three nights, and we will find out next Monday (lab draws) if she handled the transition well. Please add this to your prayer list. We would love to be able to give Kensley a real bath, or to take her swimming this summer. It would be a dream come true.

Christmas ills 12/29/09

Wow! What a holiday. We were so sick. Kaydee had strep. Kinsley had double ear infections. Both girls were miserable. Kensley had to have two antibiotic shots. Kaydee took oral antibiotics. We were going to go to Grandma's for Christmas, but we were too sick and I was too tired of taking care of everyone to load up and go. So we spent a quiet Christmas at home with snow covered ground, a white Christmas. It was nice. The kids began to feel better on Christmas day. We watched the Nativity Story on Christmas Eve and made our lists of what we would give Jesus for His birthday. On Christmas morning we opened gifts. They loved their presents and we remembered the miracle parts of our year, inspite of the extremely hard few days that had just past. Kensley had been waking up at 2am for the 6 days. Her stools went from 3 times a day to 6 times a day. I am sooooo tired, physically, mentally, emotionally. I pray that her stools will slow down again, and that we can finally get off of her fluids at night. It has been soooo hard. We almost get off and then she gets sick or a cold or something. We really need a break, a time of blessings, and we pray that January will bring that.

Welcome to Fall-What's a little dirt? 9/23/09

It is beautiful in my part of Texas as Fall begins. It makes it bearable to live here considering that in the Spring time the wind blows 90 miles an hour and the dirt from New Mexico seeps through every nook and crack to land on your floor. BUT, what's a little dirt when the today was sooo beautiful with the crispness of the fall air and the leaves just beginning to turn. I have started to notice that our lives are very similar...what's a little poop? HA. Everyday there are 3 or 4 liquid stools that no diaper has been designed to contain, and there are messes, and lots of laundry, all while regular life continues (homework, school activities, shopping, making lunches, football, dance, etc. etc.) BUT, what's a little poop when my children are all so joyful and growing and dealing with all the things we have to deal with as if that is life. YES, joy. It has been a long dark winter that lasted from Fall of 2008 until now. Hope seems to have floated back to the surface. I can finally look at my baby girl and see the 22lb bundle of happiness that she is in spite of all she has been through. She simply is the happiest child-simply happy to be alive. She is soooo normal. BOY, did I worry about this. She has met all of her developmental milestones so far. She is between the 35% and the 50% on height, weight and head circumference. She runs around everywhere. Hugs and loves all of us, including our golden retriever puppy, every day. She simply doesn't know that anything is wrong with her. If she did not have her feeding tube attached for 20 hours each day, no one else would know either. BUT, again there is hope. At this time Kensley has a feeding tube and a central line. The central line allows her to have fluid (basically saline) infused each night. At this time we have weened off of the fluid to 200 ml over 7 hours, and her labs show that she is handling everything great. So, now we will be decreasing the fluids even more, until they will be so minuscule that they will go away all together, meaning that the central line could be removed before Christmas. If you're in a praying mood, that is my request. I can not believe how far we have come or how hard and long this part of our journey has been. This is a chronic condition and there will be mountains to climb in the future, but the whole family has finally broke in the climbing boots and we are much more prepared for trip.

I have to be honest to everyone who has followed any part of our story. From the moment that Kensley came out of the 2nd major surgery(40 hours after birth), and we were told that she lost most of her small intestine, and that the prognosis was not good, I was not living in faith. I was not praying in faith. I was not existing in faith. I was scared, and desperate, and devastated, and angry, and confused, but I was not faithful. I didn't really pray to God with faith that HE could do anything for Kensley. I begged and cried to God...for almost a year. I could not feel the Holy Spirit and I could not really see the progress that Kensley was even making. All I could see was that things were not good. They were messy and gross and scary and impossible. I heard it over and over in my head, "How can she thrive with this condition, How can she lead a normal productive life, How can I keep this type of care up, How can any of us lead a normal productive life while caring for Kensley? AND, Why did God let this happen?" I don't know when my heart began to let go of all the bitterness, and fear, and hopelessness. My depression got pretty bad. I was putting on a good face, saying the right things, but not necessarily feeling them. Inside, I blamed myself for Kensley's condition. I had to give up the job I loved, not to mention the financial strain. J. has had to travel a lot with his job. He carries the insurance that has kept us afloat. So, I am the single mom for at least 3 nights a week, usually more. I became 60lbs overweight. I haven't slept through the night in 16 months. I don't get to go to church regularly anymore, and I have not been away from Kensley for more than 3 hours since she was born. Then there all the regular daily things that have to be done. It is quite a list. I am probably entitled to a little depression. I do know that the only thing that has keep me partially sane has been my daily Bible time. I have just kept reading God's word. Some days I think I was just reading and not even thinking, but I was there and even though there were times when I could not feel it, God was holding on to me. Holding on until my pain lessened enough to start hearing Him again, lessened enough that I could start feeling His love again. You see, God believes in me, no matter how I FEEL. He believes in me and J. and Kaydee and Cooper and Kensley. He believes we can do this. He believes we will not only make it but we will succeed and be better than ever. He believes we will show the world what God does and that many will believe because of it. How do I know this? I kept reading and some things got through...

"And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character, and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us" Romans 5:2b-5

"For I am convinced that neither death nor life, neither angels nor demons, neither the present not the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:38-39

I guess I finally figured out that Kensley was not born dying. She was born dying ...to live. Tana

Summer time is almost over 8/19/09

June-Our new puppy! Now I have two girls that poop on the floor.

July -Kensley and Daddy with the cows at PawPaw Free's.

NICU reunion June- Kensley with her Neo-natologist, Dr. Contreras

Summer update: We made it through the summer. Things are rather steady around here. Kensley is 15 months old and running, not walking all over the place, which is a big problem for mom because she is attached to a feeding bag that is too big for her to carry, sooo, I have to follow her every where she goes. You can image how little gets done around here, but she is very cute, and a joy to watch. Kaydee and Cooper have really enjoyed this summer in comparison to the previous summer. Lots of swimming and play dates and fun. Kensley and by necessity, me, were both in the hospital most of last summer(2008). In fact we went into the hospital on the 4th of July 2008, so you can image how excited Cooper was to shoot off fireworks this year. We went to our friend's house and together we enjoyed our $20.00 of fireworks as if they were a million dollar show. Praise be to God. Kensley had another appointment in Omaha on the 3rd and 4th of August. She made the trip well. The appointment was great. Her small bowel series showed little dilation and lots of length. Yes, I said lots of length. Don't get too excited. Her bowel is still short, but it has approximately tripled in length from the portion left after the surgery just after birth. This is what the doctors hope for, but it does not always happen. So, we praise God again. Her bacterial overgrowth does not appear to be out of hand at this time, but her stools are very liquid, about 3 or 4 a day. And we expect that this will be our life from now on. We can not say that we are out of the wood or that we see the end of the tunnel, but we are encouraged. Praise be to God. Tana