There are SO many things...
I could choose to write about.
I thought about sharing our holiday decorations with those of you who have asked about seeing pics of what it all looks like this year. Our house is most homey around the holidays and we all enjoy sitting around the family room under the glow of the lights each evening.
I could write for days and days about our beautiful Allie and all that is happening in her world.
I SO love this young lady. Her sweet heart is as beautiful as her outside appearance. As I watched her getting ready for a banquet last night I wondered to myself where the years had gone and how did they pass me by so quickly. I could picture my 4 year old Allie sitting in front of the mirror spreading lip gloss on everything BUT her actual lips. The memory made me smile as I stood across the room and watched her add one last layer of gloss to that smile before she ran out the door.
I wish I had the words to share with you guys all about this young man who lives in our home. So many exciting things are beginning to take shape in his life. The dream of college baseball is so close its almost scary. As I read the emails, receive phone calls, and open letters I have to pinch myself. He is no longer our little guy swinging with all his might to knock that ball of the tee. The years and year of practices are starting to all come together. We spend a lot of our weekends this fall traveling to this showcase and that letting as many coaches see him play as possible. There is so little time left I can hardly believe it.
I know God is working is his life and I can't wait to see where He sends him.
Then there is our Ashley. What a mess! I seriously have so much to share about the goings on in her life. This week between club tryouts and baseball showcases for our big kids we will be squeezing in a trip to Omaha for our little one. Its not really a trip we want to take, but we are indeed taking it. How I wish I could travel to Omaha to visit all the sweet nurses who have become such precious friends to me or to catch up with those friends who have loved and ministered to us so well over the years. I love them all so much! Instead we will be traveling 30 hours round trip to spend less than 6 hours in Omaha! Seriously unbelievable to me, but it is what is to take place.
Dave and I are leaving Longview tomorrow evening around 7 and driving straight through the night. We should pull up to the hospital around 9am. Ash's first appointment is at 10am Thursday morning for an ultrasound. It will be followed up with labs and a clinic visit at 1. As soon as the visit is over we are loading Ash back up in the car to travel back home. All in all we will be in the car for over 30 hours. Its going to be a marathon! Our plan is to be back home as soon as possible.
The trip is going to be a long one! There are many, many things we have to discuss while we are there. No one really knows how we should proceed. We of course are looking for quality of life for Ashley Kate. That has always been our goal for her. Give her as many days full of love and laughter are we can. We know we are not prepared to yet list her for another transplant.
Her liver function has improved a little over the past month, but it is no where near what it has been prior to the onset of this last round of illness. We are all aware that its struggling and are hoping for a turn around for her. We are not naive about the state of things. We have not forgotten about her limited line access. Nor have we ever forgotten that she is extremely fragile medically. The goal at this point is to get everyone on the same page as we lay out the options and discuss plans for her future. I'm not looking forward to these tough discussion or the decisions that we will be asked to make.
I am however, looking forward to having many, many hours to spend with Dave. Its not often that we have time to really slow down long enough to talk about the hard stuff. I feel like we are doing just enough to keep our heads above water and survive most days.
Other than needing a lot of extra hours to rest Ash is feeling fairly good. She's been home for over a month and not gone out to any events at all. She loves for us take her on drives in the car though. Her daddy happily loads her up most evenings and takes her for a little ride through the neighborhoods. Just enough to let her see the outside world and whats going on it.
So...like I said...there are SO many things I could write about and would love to share, but time just hasn't allowed it this week as we prepare to head out to Omaha. Your prayers for us as we travel on the roads, prayers for our teenagers safety as they stay behind for school, and prayers for our tiny girl's future as we sit down with some of the most brilliant transplant surgeons in the country to develop a plan would be greatly appreciated.
We anticipate returning in the early morning hours of Friday of this week. I am then looking forward to staring straight ahead into a wonderful holiday season spent with our children here in our home. God Bless you guys this week. Love you all. Trish