Continue Praying for our Family

So sorry it has been so long since I have updated our blog, but quite honestly the last few months have been very hard emotionally. I think once we hit being here a year we all sort of went numb not knowing when we were ever going to go home. We also found out that Wright's gvhd (graft versus host disease) was chronic in both his liver and skin.This was VERY hard for us to swallow.  Everytime we tried weaning his immunosuppressives we would end up in the hospital with a fever or gvhd flare. What does this all mean? Well, we really dont know at this point except he will likely remain on immunosuppressives for a very long time. He is not in pain which is a complete blessing and he has a good appetite which sometimes is not the case with liver gvhd. We have so many things to be thankful for inspite of all the challenges we have faced and will continue to face.  Our goal is to get Wright stable enough to come home. Our visits home have been the absolute best medicine for him physically and mentally. Once home we will be able to go to UNC weekly to see a BMT physician that left Cincinnatti Children's a year ago. We will travel to Cincinnati monthly. Wright will receive homebound school, physical therapy, occupational therapy and speech therapy at home for next few years.  Our biggest concern is going to be keeping him well and keeping old viruses from reactivating while we continue to suppress his immune system to settle his active t cells down.  Also, preserving organ function. His liver has taken a real hit and sometimes gvhd can cause permanent damage to the liver. Our liver doctor reassured us he would be eligible for a liver transplant should he go into liver failure. Not sure how "reassured" we felt after that appointment. The thought of another transplant made us sick to our stomachs. His kidneys also have had some trouble so we have to constantly monitor them. On a more positive note his bone denisty scan was surprisingly on the curve which is almost unheard of with all the steroids he has had in the past year and he is actually headed towards his projected growth path. His last PT evaluation was good as well. His therapist really feels once home he will blossom. So what we need from all of you......please pray for our family to remain strong.....pray for us to go home soon.....pray for our transition back together as a family to be seamless. We need to be together more than anything! I completely trust God and His plans for our family and I know His timing is perfect!

Wow.....One Year.....

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

Full Body Scans .....in a bit

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!!

Update on Wright

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!

Making our life a Glorious Adventure

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.

Still on A5North for Now!!

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.

Happy Reunion Deets

After picking up Tena and Bease, we had to make a drive thru stop at Chic-fila, their fave!!!! Then we made our way to the apartment to begin our fun. Wright had little gifts for Tena and Bease that he had wrapped himself.  I believe they played for hours.....dress up, wrestle men, school, coloring, Smurf Dance Off, watching TV, doctoring on poor Max, puzzles, etc. Wright played with toys he had not played with EVER. We accommodated every one's cravings by ordering Domino's and PF Changs. Wright taught Bease how to eat with chopsticks.

This picture made me holler!!!

Drinking that Chic-fila SWEET TEA!!!!

Playing, playing, playing!!!

Lord, they finally went to bed and thank goodness everyone slept late. While Princess Beasley was sleeping Saturday morning,  Wright scurried around and helped cook breakfast. He actually told me what he wanted to cook and was a big help. We had bacon, scrambled eggs, grits, toast and pancakes that he cut into butterflies and flowers. He was so proud and it was delicious!!!

We played some more and then we ordered take out from a place Wright saw on the Food Network. It is called Terry's Turf Club. Boy was it good!!! The place was packed and Tena had to drop me off so I could run in and get the food. A little pricey for burgers, but none the less worth it!!!

This was a really neat place and looked just like it did on TV. Wright was so proud!!

That night when we went to bed, Wright asked as he always does, "Mama, what is tomorrow's day"? I told him Sunday and he began to cry because he knew Miss Tena and Beasley would be going home. I am not going to talk much about the departure because I will cry again, but as soon as Tena sends me her pictures I will post them.

Happy Reunion

This weekend was very special to say the least! Wright was reunited with his best buddy, Beasley, that he did confirm they will marry when they are 21 years old. They were beyond excited to see one another. I am so glad Tena was well enough to make the trip. We were blessed that Wright received the okay from his doc about the visit. I think it meant the world to these two children and it tickled my soul to see Wright play with someone his age and act normal. He did an excellent job keeping up with Bease and for just a moment, it was like none of the past year's events had ever even transpired. It was AWESOME!!! I felt like a normal Mom with a normal kid having a normal play date. Bease never for a minute looked or acted as if Wright was any different than he was before. She warmed my heart the way she sincerely loves him... simply because he is Wright.

 Now, before going into any weekend details, you must first understand the origin of Wright and Bease's friendship. My sister, Gina, and Tena are the same age.  For as long as I can remember, she and Tena were best  friends. We all grew up together, went to school with one another, came back from college and all settled back in our hometown of Wallace. We helped one another get married to some local boys and we were right there to help as we birthed our babies.  Gina and Tena were pregnant with their first baby together.  Tena and I were pregnant with our second babies together (Wright and Bease). Our due date was actually a month apart, but we would joke and say "wouldn't it be cool if they were born on the same day?". Now, honestly I was not all about waiting until Tena's due date to have Wright. For goodness sake, a month late??? Well, I did go two weeks late and Tena went two weeks early. No, hate to disappoint anyone...they were not born on the same day..... Wright was born on May 16, 2005 and Beasley on May 17, 2005. Boy was it a time in the hospital with Ken Roberts. We had a special time. We all had lots of visitors. All Tena's visitors stopped by to see us and all our visitors went to see Tena. I have a picture at my house that I will certainly post later of the two babies  side by side in the hospital bassinets. They were adorable. Wright weighed 9 lbs 11 oz and was 23 1/2 inches long.....a whopper!!!! Sweet Bease and her petite self weighed only 7 lbs 3 oz and 19 1/2 inches long. They have celebrated every birthday together  ever since except this past year. Their little friendship goes even beyond their entrance into the world.  Miss Tena keeps children in her home. And as fate would have it, when our precious baby sitter Grandma Mary became very sick, Tena had openings for two children and began keeping both of my boys while I was at work. So basically, Wright and Beasley have grown up together. This is really the first time ever they have been separated....EVER!

 Celebrating their 5th Birthday together at Cinderella

 Lazarex trike a thon while attending preschool together

 Christmas at Twilight

 Bease in Cincy

 Happy Wright

 In the car after we picked Bease up from airport! They were so tickled!

 Playing Smurf Dance Off

Watching movies

Their friendship is so special and TICKLES MY SOUL. Wright truly loves Beasley with all of his heart and misses her so much. This visit was better than any medicine any doctor could of given him. It was good for me to get a "dose" of normal too!!

I love children! I always have. I love the way they accept changes, differences, and challenges. They are so resilient! I love the way children love Jesus. I love the way they pray. I love that when Wright prays and asks Jesus for his help, that Wright is confident that his prayer will be answered.

"Let the children come to me. Don't stop them! For the Kingdom of God belongs to such as these. I assure you, anyone who doesn't have their kind of faith will never get into the Kingdom of God." Mark 10:14-15

Thanks for all the blog support!

Thanks for all the encouragement and sweet comments on my new blog and my sweet followers!!!! I have made quite a few non-facebookers pretty happy.  I got a text from my precious Daddy this morning that he liked it...it just tickled my soul!! Gosh I miss him and my Mama so much. After having Hill and Wright, I understand and appreciate so much more all the sacrifices they made and sleepless nights that had because of Gina and me.

So Wright has had a pretty good day. Those four days at home have really motivated him. I love it! He wakes up now each morning ready to take his medicine and get dressed. He picks out his own outfit and actually dresses himself and bless his heart sprays on axe deodorant. He smelled so high today I got a severe headache. we are in a very different place than where we were just a few weeks ago. \0/Praise the Lord \0/  I put him in his "bubble stroller" wearing his "green mask" and let him pick out school supplies today. He was so excited and it was bittersweet for me. I so much wish he was attending first grade in a real school with the rest of his buddies. I know that time will come soon enough but I can help but feel like he is missing out. I do cherish our time so much and feel like we are making so many memories of our own. Anyway, he picked out some supplies and we are fixing up a room in our apartment like a classroom so we will have our own space for school. So glad to see him excited. I let him get a lunchbox and bookbag because he has wanted one so bad. He asked if we were going to have nap time at school and I think I yelled "yes" so fast I scared him!!! Remember, its the little things!!! Okay, so I like to ramble....enough for now. I'll explain our title later as well as try to get all my 'notes' during Wright's journey on the blog.

First Blog Ever...

Okay, I finally did it!!! Thanks to Heather Owens and Georgia Farrior as my teachers and encouragers, I have attempted to create a blog. Lately, I have been following several blogs and think it will be a very neat way to document our crazy life. I have to admit, it was a little intimidating trying something new. I really like the ease and "mindlessness" at which I post on facebook. However, I know numerous people not on facebook that would like to get  Wright's updates, so I am trying to accommodate all levels of internet access. Anyway, today in day hospital has proved to be a pretty good day if I do say so myself. Wright's labs on Monday were awesome!! Praise God!!!! And for the most part, were relatively unchanged today. A few things went up and a few went down, but no real big change. Adenovirus was <625 on Monday, so minus all the diarrhea CMX is proving to be successful. We are contending with a cough/runny nose issue that got better the 4 days we were home, only to flare again when we returned. I told the doctor we were allergic to Cincinnati and needed to get home quickly to get this dreadful allergy fixed. She partially agreed and gave us a script for allergy meds. Oh well, it was worth a try. Then the bloody noses that are self inflicted with Wright's pointer fingers, but none the less cause us a great deal of stress. Even though platelets were stable, we got some today just to be safe.Today as we were leaving the hospital he somehow got choked on a huge blood clot from his nose in the lobby. I thought for sure someone would see us and admit the poor guy. I got out fast. But not before he opened his mouth with blood all in it freaking out the other people on the elevator. He looked like something off a horror movie screaming with blood all in his teeth . I had to chuckle to keep from crying. We did meet Wright's new teacher today. He will see her once a week and the rest is up to me. Oh NO!!! All I can say is we may have alot drive by field trips. Teacher friends....HELP ME!!!We got other great news! We do not go back to day hospital or clinic again until next Wednesday. Yep, you read that right! God is soooo good, isnt't He? As long as he continues on this great path, we will only go to the hospital once a week. The other awesome part is we may get to go home again for an extended vacay once a month pending travel. Our doc will not let Wright travel in a car for 10 hours just yet, nor can he fly commercially.  I tried as best I could to pin down our doc on a "possibly home for good date". No one here likes to ever go there because its just not "good luck". Well, we know how our "luck" seems to be, so I did not press too hard. Basically, we need to wean Wright's steroids down to half per kilo, which is roughly 10 mg daily with no rebound GVH or other problems. We have to wean Wright VERY slowly because of his severe GVH history but also his history with fevers and body aches with steroid wean. I ask each of you to pray, pray, pray that he stays well and is successful with the steroid wean. That his liver and kidneys continue to function well. That his platelets continue to increase on their own as well as his ANC. This has been an extremely long and emotional ride and we are ready to be in Wallace for good with Daddy and Hill. Well, I think I have written enough for my first blog entry. I promise they will not always be so long!!! Maybe next blog I can explain to you where the title of our blog came from. Those who know me really well should know......that tickles my soul!