Long Over due
Its been too long since my last update. I know, forgive me. We are in the process of switching computers at our house and it makes posting very difficult. Today is the first time I've had any internet in almost a week. Anyway...here is an overview of what has been happening around our house.
Our sweet girl is so wonderful. There are moments in our days when I allow myself to forget about the "truth" of where we are and just get lost in the amazing memories being made with our beautiful Ashley Kate. This picture was taken this afternoon. I think she looks AMAZING! Stare at this face and just try to picture where she's been this summer, what she has survived, and how far she has come. Wow. It gives me chills when I remember.
I share the beauty of these moments with you because I'm exhausted with the ugliness of the others. I truly am. Not all of her days are like this. Not even all day long are her days like you see in this picture, but there are moments of them that are as sweet as what you are looking at.
Each and every day we go outside. The weather has changed and with its changing God has granted us some of the most beautiful memories we've ever shared with our Ashley. She loves to take walks. LONG ONES. She wants to go, go, go. So...we do. We take turns. Me, my mom, and Dave. It gets exhausting to keep going and going and going so we tag-team it. She doesn't care who is pulling that wagon as long as that wagon keeps on trucking.
Ash is still sleeping a lot more than she used to. I mean A LOT more than before she lost the bowel. She used to sleep this much before she was transplanted. Its the whole liver disease issue. Its exhausting for her. Her energy level gets depleted very, very quickly. Her liver numbers are still elevated. Its still struggling to survive. We are still no closer to obtaining Omegavin than we were months ago. It is heartbreaking to know there is help out there and yet it remains outside our reach.
Other than her liver disease and the need for a new one, oh and the need for a bowel too, she mainly struggles with retching and vomiting. Its daily. All day long. As soon as she goes from a lying down position to a seated one it begins. She begs for water. Constantly, and yet she can not tolerate even the smallest of sips. As soon as it goes in the vomiting begins. There is almost no flow into the remaining few inches of bowel. Its as if it sits in the stomach until it reaches capacity and then all comes up. The constant laundry is exhausting. Without my mom's help I'm not sure I could survive the mounds and mounds of it.
Her meds have been weaned again. She only remains on 12 mics of fentanyl and we hope to remove it next week. Each week we witness the life in her eyes coming back to us as we watch the drugs disappear from her system. Her liver function is also better without the struggle to metabolize the narcotics. Her indirect and direct bilirubin remains around 12, but that is down from the previous weeks of 14 and 17. We are grateful for any changes in the right direction.
In all honesty if I could keep her here and NEVER put her through the pain and uncertainty of transplant I would. I try not to think of the day that we will leave our home. I try not to think of the struggle that lies ahead of Ashley Kate. I hope in the deepest part of my heart that this line will hold up for years and years and that this sick liver would repair itself so that my girl could just stay home. Stay home and live. Live for a long, long time. I know its unrealistic but the knowledge that we are starting over is so painful for me that it cripples me if I think on it. It makes me want to hide and never open my eyes again.
So...I'm trying not to think about it. Instead I am soaking up the days we have here together. My mom is a huge help. Her presence allows me the opportunity to be there with and for Blake and Allie's activities. I am LOVING this time.
Allie's volleyball and soccer seasons are in full swing. It is so fun to watch our girl play ball. She is such an incredible athlete. What joy it brings to our hearts to see her on the court and on the field. Allie doesn't play anything just a little. Its all or nothing for her.
She has picked up the game of volleyball as if she's been playing it her whole life. She is having so much fun with her team, her coaches, and all of her friends. School has been amazing for her this first 6 weeks. She LOVES it. I worried and worried over the change in schools for her, but so far its been a huge blessing. I am afraid of leaving her. She is at an age where moms are important and in all honesty there have been tears shed over a few things before bed on a few nights. Growing up is not easy and you kind of need a mom to share broken hearts with. Dads just don't get the whole "boy" thing. According to Dave and Blake, Allie is free to be interested in boys at the age of 30 and not a day sooner. Blake has already taken it upon himself to text some of them (without her permission) and warn them to stay away from her. She could have died! Lots of tears of this one! Although I understood her being upset I kind of smiled on the inside knowing Blake has told this one kid, "I'm your worst nightmare". How could I not laugh about that?
She is still playing for the Texas Pride. This will probably be her last year in rec soccer. She needs to go club. She has fought it for years not wanting all the travel, but she's ready now for a little more. She has the opportunity to play as a guest for a club team in a tournament this November. That will be a great "test run" for her before tryouts in January.
Blake is great. Loving his life. Loving baseball. Loving high school. Loving his sisters. Not really loving his drivers ed class that starts at 6:50am causing him to be in the gym by 6 every morning so that he and Dave can get their work out in, but the pay off will be worth it. In a few weeks he will get his permit.
He is playing on two different teams this fall before trying out in December for the high school baseball team. He's doing great. Playing some of the best ball of his career so far. I love watching him. I really get lost in soaking up each moment he's out on that field. One of my biggest hurts about leaving for transplant is knowing I will be missing out on his first high school baseball season. I try not to think about it because it does make me cry.
Blake turned 15 last Saturday. Wow. It amazes me that my son is 15 years old. I could not be prouder of this young man. I love him so, so much. He is a great kid. Truly he is. We celebrated his birthday with his girlfriend Allison who also turned 15 the very same day. It was a wonderful party with lots of fun and fellowship with their closest friends. I couldn't imagine celebrating it any other way than we did. They are both such great young people who make us so very proud. The also celebrated their 1 year anniversary that day. Crazy, I know, but he is blessed to have such a sweet, beautiful girl in his life. She is a blessing to him and that makes her a blessing to us too.
So...we are doing it. We are home. We are living life. We are enjoying our family. We are loving on all three of our kids. When you face days that make you unsure if you'll ever get to have them all together again it makes the reality of actually living them so precious. I can't describe to you how good it feels, among the pain, to just be here with our family. We still hurt. We still cry. We still question. We still wonder. We still pray. For help, for direction, for miracles, for organs, for another way, if only there could be another way made for us to keep her in our lives. We just do...but...we are surviving and soaking up the moments we have been blessed with.
Thank you for your continued prayers. For all your kind words of encouragement. Thank you for sticking around. Its a rough life, but its a blessed life. I think we can all agree on that. Good night and God bless you. Trish