Good Advice 5/19/09

Well, it has been forever since I last blogged, but the good news is that life is hopping. We are so busy with the end of school field trips and programs, etc. etc. that I have hardly had time to think. Things are going well here. Kensley is 19lbs and 2 ozs which puts her in about the 10th percentile of weight and she is 29 inches long which puts her in the 50th for height. This is really great. Her older sister Kaydee was only 17lbs and 13oz at 1 year which is the 5th percentile (Kaydee was also 31 inches long which is the 95th percentile). So I think we just make them long and lean. The doctors say that Kensley is doing great and she looks great too. She turned 1 year old on April the 28th. I can hardly believe that any of us even survived this year.

She is only having 3 stools a day (occasionally only 2). Sometimes they are liquid, but bacterial overgrowth is just going to be a part of our life. She has been off of all TPN calories(IV nutrition) since the end of February. Presently Kensley is receiving 400ml over 10 hours at night of IV fluids through her central line (because of the short gut it is very difficult for these children to maintain fluid levels), but we are reducing the fluids every other week and she is doing very well in maintaining her own levels. The doctors suspect that she will be off of fluids all together by the end of August. I have learned not the maintain concrete deadlines, but we will lift our prayers to God and let him determine the time line. We are not "out of the wood" and I don't even want to look for a light at the end of the tunnel, because I feel that Jesus has blown the roof off of the tunnel and just let the light shine down all the time. The days are not always good. Sometimes there is poop all over the floor, the highchair, the clothes and the toys, but the moments, those precious moments of laughter and love and hope and always great and now that I have my eyes open to that hope again, I can finally see them clearly.

This has obviously been quite a spiritual test for our entire family. We have been strong and faithful and weak and doubtful, sometimes within a few hours. BUT, God has remained with us. I have daily proof in Kensley and in the many wonderful friends and family who often had to come to our rescue. Thank you. I have received a lot of advice through out this year, and there have been some very inspiring people and moments, but the most inspiring-a true miracle and blessing came in the form of a mom who knew all too well where I stood, because she had filled the same shoes. Her name is Tina and her son, Eric was born premature with an intestine issue that caused him to lose even more than Kensley. Eric is now 9 and doing great with little or no symptoms of Short Bowel. He is truly a miracle and an inspiration to me. She has been there to remind me to have faith and to give me the gentle kick in the pants that I need on occasion. With humor and love she always inspires me to keep keeping on. Thank you Tina.