Going Tubing...

Yesterday was a difficult day in our house. It started off as a day that we were filled with so much hope and encouragement about next steps in our journey with Payton. We had an appointment at CHoC that we thought was going to turn a corner for our treatment of her seizures. It turned a corner all right and we smacked right into a big brick wall. First off her neurologist has now refused to sign her papers to get her red card for Charlotte's Web. It was not only that she didn't want to sign it but she did everything in her power to steer us away from it. She has asked us to give the other medicine, Onfi, another try while we wait on the list for the CW. We have used the Onfi before with no success with Payton, but it was a very small dose. We agreed to give a stepped up dosing schedule a try while we continue to wait for the CW, which won't be available to Payton until at least October.

 Now for the BIG whammo...the Dr's want to put Payton on a feeding tube. Talk about a kick in the gut. We went up there yesterday thinking we were taking a step in one direction, only to find out we were going to be going a completely different direction. We were just completely shocked when they told us this. I will admit, I spent a lot of the day yesterday in tears, and in prayer. I ran the gamut of angry, asking why, asking for guidance, and finally accepting His direction. Payton has not gained any weight in almost a year, in fact she has lost some. It can take up to an hour to get through feeding her a full meal, and that's if she doesn't lose interest and quit. She has never really been good at chewing, but we have continued to work on it with her hoping that we could get past that, but eating has always been a struggle. We have tried protein shakes, and adding other things to her diet with no luck. There is a a bit of good news to it though, we will not be jumping straight to a G-tube. Her Dr would like to do an NG tube first. That is the tube that will run up her nose and into her stomach. She will only be hooked up to the pump at night to receive some extra nutrition at night. During the day we can continue to work on feeding and chewing to see if we can get that going better. I think we realized that feeding for Payton is more of an inclusion thing for our family, not necessarily something that is providing her the whole nutrition that she needs. We also know that with getting more nutrition and the right nutrition into her body will possibly be a help in her doing so much more than she is able to do now. She tires very easily and is still needing several naps everyday and it could be just that she is not getting as much nutrition at meal times as we would like to believe that she is. We will be doing some blood work in the next week to make sure that the problem is not her thyroid or that her growth hormone is off before we put the tube in. If the NG tube ends up helping her and we cannot improve her oral feedings we will then discuss a G-tube for her.

 Please continue to pray for our whole family as we go through this transition. We had always thought that we were going to be able to avoid the tube. I know it is going to sound strange, but it was always something that brought us a sense of how well she was doing that we weren't on a feeding tube. I know in my head that a feeding tube does not mean that she is not doing well, but in my heart it hurts. It feels like a step back from where we have worked so hard to get. I woke up this morning feeling so much more at peace with all of this after spending a LOT of time in prayer yesterday and last night. I love it when He speaks to you, I just have to share in closing a quote from my study this morning in Jesus Calling: "I am above all things: your problems, your pain, and swirling events in this ever changing world. When you behold my face your rise above circumstances and rest with me in heavenly realms. This is the way of Peace, living in the Light of My Presence. I guarantee you will always have problems in this world but they must not become your focus. When you feel yourself sinking in the sea of circumstances, say "Help me, Jesus" and I will draw you back to Me." I love it when God grabs me like that first thing in my day. Thank you Jesus for pulling me closer to you.