Today we may have made a breakthrough with Lydia’s stomach problems! And so far, it is an easy fix. Since we left Seattle, Lydia’s tummy has been upset. I have been petrified that she is having GVHD problems (which lead to 9 months of steroids), even though she is not experiencing typical gut GVHD. Well NOTHING with Lydia is typical, is it? I am so thankful for my wonderful doctors, who want to investigate her symptoms and not jump to conclusions as I do. On investigation, the Dr. Cook has wanted to get x-rays of Lydia’s gut to see if her feeding tube is in the right place. She was hoping that it was positioned wrong and the culprit for Lydia’s major problems. Today, it was discovered that the tube had slipped out of position and working as a TP tube (a feeding tube positioned differently that doesn’t agree with Lydia’s feeding schedule). A new tube was placed and x-rays taken to make sure that it was in the exact right position. Since then, Lydia is keeping up with her dietary schedule WITHOUT getting sick! We are not out of the woods, but for now it looks like this was a hardware problem not gut GVHD! I am elated.
Though Lydia, ate well in the beginning, she takes most of her formula through her feeding tube. This is most common of a baby that was transplanted. Right now, I just pray that her stomach can handle the food that comes in.
I, personally, have been a wreck this week. With Lydia sick, David going back to work, and NO more than 1 hour of straight sleep a night. I have been ridiculous. I have much hope, but pitiful living in many of the moments this week. I have faith that God is with Lydia, my boys, my family, and me, but can’t “feel” him. I am so exhausted it is unreal. I have much hope that this is just a season, so I keep moving forward and finding God working in the moment. I have been overwhelmed knowing that I haven’t let you all know how this next year is pivotal in the health of Lydia.
Lydia is still VERY immune compromised. Because of that Lydia and my sons are not suppose to play closely with other children or be in any kind of crowd. Next May, things may be very different. Hopefully by then, she will have gotten through without an acute flare-up of GVHD, be off of more meds, have an immune system, eat on her own, continue to be cancer free, and start catching up with others her age (right now she is on more of a six month level, I think – This is typical of children hospitalized so much, not to mention ALL of her meds, chemo, and radiation). Lydia is down to about 20 doses of meds that I draw up a day. Most are to compensate for problems that her immune suppressant drugs cause.
Today, in the midst of being totally emotional and tired, I was calmed down, reminded of the sweet peace God has given Lyida and me through her. And that a season that starts as a crisis, often ends just as quickly as it begins. Jesus is my hope, even when all I want to do is nothing at all. I don’t feel like I have anything to give you as you read this. This is just our lives as we live them. I feel crappy, exhausted, and aged most of the time. The other part, I am thrilled in the moment.
Thank you for your continued prayers. We still have a long road ahead of us.
September 13, 2008 at 11:33 am
Thanks for the inspiration you give to so many through your writings. You may feel that you have nothing left to give, but God gives encouragement and hope through your struggles. Our prayers are with you.
September 13, 2008 at 1:54 pm
Liz, You inspire so many of us with your words and your faith, regardless of if you “feel” like you have anything to give us. Just the fact that you can put your experiences into cohesive sentences after so little sleep is amazing! Thank you for sharing the inner parts of your lives and hearts with us. Just this week I came across a verse that spoke to me. I pray that it refreshes your heart too. 2 Cor 4:16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. The chapter goes on to remind us to keep our eyes focused on what is unseen, not what is seen! I love this!!! In short, keep your focus on Christ. He will continue to love and sustain you. Much Love, Shari
September 13, 2008 at 6:34 pm
Hi Liz,
I check little leaps most days to see if there’s been an update, and I just want you to know how much I admire your strength and courage. Even if you’re not feeling strong, the rest of us can see it so clearly.
I hope you can get some good rest soon– I can only imagine how much you need it. I expect that once you’ve had a few good nights of sleep, the moments of rejoicing will be longer and more frequent.
Take Care–
Christine
September 13, 2008 at 6:44 pm
Liz, I love that you are so real. You think you have nothing to give us, but you are so wrong. You give hope, encouragement, and you show us what faith looks like in real life. I can’t wait to see you when we get home. I’m praying that God gives you rest. If not physical rest, then emotional rest. We love you guys so much. I’m so glad the feeding tube got worked out.
love you,
Mary G.
September 14, 2008 at 6:36 pm
I can’t wait to come and visit and allow you to get a little sleep. I know a little sleep will go along way toward a greater perspective. You will see that the rest of do. Your strength, your love and your grace and how you are passing that on to your kids.
You are doing awesome. Keep it up.
Love you,
Amber
September 15, 2008 at 1:08 pm
HI LIZ,
HANG IN THERE, YOU ARE GOING A GREAT JOB,THIS IS TOUGH AT TIMES BUT I KNOW WE DO WHAT WE NEED TO FOR OUR ANGELS.. YOU GIVE ME MORE STRENGTH AND COURAGE.I AM GLAD THAT YOU WERE ABLE TO GO HOME AND BE WITH YOUR FAMILY.
KEEP YOUR FAITH LIZ YOU WILL GET HELP SOUNDS LIKE YOU HAVE A LOT OF FAMILY.
ENJOY YOUR FAMILY AND TAKE IT ONE DAY AT A TIME. I WILL CONTINUE MY PRAYERS FOR YOU AND MISS LYDIA..
I WENT ON THE SOULUMINATION WEBSITE AND SAW
LYDIA AND ANNAH… THEY ARE BEAUTIFUL PICTURES…
September 15, 2008 at 4:01 pm
Hey, Sweet Thing!
Just remember that SO many prayers are being sent up on behalf of Lydia and the entire family, that people are NOT forgetting about y’all – and of course, neither is GOD – HE will NEVER!!! I can only imagine what it’s like to be going through what all of you have been going through for these many, many exhausting months ~ but with yours and David’s strength, spirit, and trust in our Lord, you all will be just fine! Only HE knows the future, but I’m sure that there are great things in store for all of you!!!
Much love to all!
Give all three kids a hug for me.
God bless!
Aunt Kay
September 17, 2008 at 1:02 pm
Liz,
Your words brought me to tears. I feel so much for you. I wish for you and your family so many things……health, rest, peace. Please know that you are being prayed for every day and let that and your trust in God give you the strength to go on. YOu are such an inspiration to us all! We love each of you!
Suzanne