Today is exactly one year since Wright and I were flown from NHRMC by plane to Cincinnati. Within days we were told that a bone marrow transplant was our only chance to cure Wright's rare immune deficiency, XLP with secondary HLH. Without a transplant he would eventually get an infection his body could not recover from or even worse lymphoma or leukemia. We also learned that Wright had developed another rare condition, MDS (myeloid dysplastic syndrome) which is Pre Leukemia and abnormal cells were rapidly growing. With the additional diagnosis his transplant was pushed up 3 months. Nothing, absolutely NOTHING could have ever prepared us for this past year. With all of the challenges, fear, uncertainty and grief we have faced this past year.....somewhere along the way we have learned more than we could of ever imagined. We have learned to let go of things not in our control. People ask us all the time how do we do it? Our answer simply is God. Without our faith and trust in God we would be completely lost. We have also learned so much about one another. I believe this experience has brought the four of us closer together than ever before. We have learned to spend quality time because we do not have the luxury of quantity of time. I have seen Denny at his absolute lowest and I still think he is the strongest, bravest, most amazing man ever. He has seen me totally lose it and almost not be able to put one foot in front of the other and he has helped me through it. We have seen both of our boys suffer and hurt in completely different ways. But we have done everything we possibly could to survive and provide as much stability and normal as we could for our boys. We have learned there are so many awesome people on this earth that go above and beyond to show us we are loved. These people include our friends, family, church and even strangers from home as well as new friends, even more strangers and an awesome team of health care providers and hospital staff. Wright is slowly making progress from his last hospitalization. His mobility really took a hit. Each day I see improvements. Each day here is progress and a day to rejoice!! We will do whatever it takes for however long it takes.
As Hill's letter to me above said "Our family is going to be together some day". We completely trust God and His plans for our family. Please continue to pray for our family and thank you God for all our blessings!!
Just to share today in Wright's devotion for September 20 his bible verse was....
The Lord directs our steps, so why try to understand everything along the way? --Proverbs 20:24
It goes on to say that God has a perfect plan for our life, so to trust Him and try to see things from His point of view. The simple act of trust will keep you from weighing yourself down with little frustrations.
For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
--2 Corinthians 4:17-18
Please say some prayers for Wright today. Today is day five with a fever. Just to rule out all possible causes he will receive a full body scan. Cultures still negative and he is covered by a string of antibiotics for infection and steriod schedule is being tweaked. I feel very postive today which is a good thing!!!Thanks!!
So discharge today was a no go. Wright has managed to spike a temperature every morning since Saturday morning and fevers occur around 8 am each day. At first, I was convinced his body wanted steroids. This has happened before and we did decrease steroids and change from IV to oral on Friday just 24 hours before his fever. I am still not ruling that out. Today's fever was quite different though. It did not go down with Tylenol initially and he was pretty miserable all day. Blood cultures are all still negative which is great. Pneumatosis and area on bottom seems to all be improving. So what is causing fever?? Could be inflammation still from pneumatosis especially since belly pain increased. We kept him from eating again today to see if that helps. Pray for our team to figure out source of fever, get a treatment plan that is successful and send us on our merry way. I am thankful that after fever subsides, he perks up quite a bit and looks pretty good. He even asked to wall the halls tonight which was a positive sign. Keep my Wright in your prayers and please continue to keep Cole Hiestand's family in your prayers too.
Something my boy taught me today.....be nice to everyone...you never know if one of them is Jesus pretending to be someone else. Wow, love that boy!
Okay, Denny just left and honestly it probably was the hardest departure we have had in a long time. I have missed him so much. I think more than he will ever know. When he is here with us, all feels right in our world. I sometimes secretly resent the fact he gets to go home to "normal", but realize home isn't "normal" anymore. And maybe, just maybe, the old normal is not what we need. I know it is hard on him being a Daddy and Mama to Hill! He works at home and his job very hard to provide for our family. He also does an awesome job being a Daddy and husband to us hundreds of miles away. I ask you to pray for him to continue to be strong and healthy. Pray for God to keep him safe as he travels, works, sleeps, etc. I can not do this without him!
I pray every day for God to give our family strength but to also speak to us and show us what He wants us to do with our lives. I really struggle sometimes. Especially on days like yesterday when a wonderful Mom and Dad say goodbye to their child and give him back to God. I can not comprehend why sweet innocent children get sick, suffer and leave this world way too soon. I have a lot of questions for God when I go to heaven. I have a feeling I will have him hemmed up for a while chatting. Sounds pretty familiar, huh?
So anyway, I do believe in signs or that God speaks to us in unique ways. While I was "blog stalking" as a fellow blog follower calls it (I miss you sweet Lauren), I read on one of my favorite blogs a devotion that literally jumped out of the screen and grabbed my heart and spoke VOLUMES to me. It comes from Jesus Calling devotion:
“Instead of striving for a predictable, safe lifestyle, seek to know Me in greater depth and breadth. I long to make your life a glorious adventure, but you must stop clinging to old ways. I am always doing something new with My beloved ones. Be on the lookout for all that I have prepared for you.
For the past year, I have been striving for a "normal" and "predictable" life. Clinging to our old ways. I am always disappointed and let down with every "bump" in the road. I believe God wants me to stop mourning the loss of our old life and things I feel disappointed that we have missed. I think He is telling me to seek Him even greater than before and trust that if I let go of our "old" life and quit striving for what is safe and predictable that he has prepared something amazing for us.....He longs to make our life a GLORIOUS ADVENTURE!! So pray for us as we try to let go of our "old" normal and help us to embrace our "new" normal.
Promise we have not dropped off the face of the earth. We are still on A5N making progress with Wright's pnuematosis. I took a short facebook/blog hiatus because it seems as soon as I update, things change and quite honestly I am just tired of the roller coaster. We are so fortunate to be surrounded by awesome nurses and other families whom seem like family. We see them more than I have seen anyone in the past year. In almost 2 weeks, September 20th to be exact, will be 1 year Wright and I have lived in Cincinnati. I have so many mixed feelings about how much our lives have changed this past year, both good and bad. It blows my mind sometimes the length of time we have been here, all Wright has been through, all that I have missed in little Hill's life, being away from Denny and seeing so many families losing their children. It is really starting to take a toll on our entire family. Please continue to pray for all of us to have strength to endure this crazy ride. Today we were suppose to go on a pass, but Wright decided to spike another temp so we stayed at the hospital. Wright and I have so enjoyed being with Denny since Tuesday. We miss him so much and he always brings so much fun. He also brings us calmness, stability, confidence and just safety to our little world here. I could cry thinking about him leaving Monday. Now, before I have my own little pity party, I must remind you how fortunate we are in so many ways. Wright talks, walks, eats, drinks, sleeps, plays, laughs, cries, jokes, cusses, loves, sings, prays and has a strong desire to get better so he can go home!!! Children are amazing gifts from God!! I will try to continue to update more frequently. Don't get too worried if you don't hear from us. It usually just means Mama (me) needs some time to adjust to a change, get her act together or I'm busy loving on my family. Happy Labor Day to all!!
Please pray for our friend Cole Hiestand who recently transferred to PICU. They have become very dear to us. Cole is ten and he was transplanted two weeks after Wright. He, like Wright, has been here for almost a year. His entire family needs our prayers.
