John’s dad stayed with us from Sunday until today. He was so easy to have around and he got some great quality time in with the kids. Oh did they all have fun together!!!!
Kite night. Melvin, John, Justin, and the kids were all out in the field. At one point there were 7 kites in the air and only 3 adults out there. I think Wyatt had a kite attached to his stroller, Hayden had one in hand, and Mel had 3 going….”the kite master”!
Hayden and Mel helped John fix the shingles on the roof. Darn wind storms keep blowing off our shingles!!!
And the park visit…..we had fun!
We have been home now for a little over 24 hours. And OH are we a happy happy family!!!! Hayden is a bit tired and can’t quite keep up, but he is laughing and playing and talking and eating and giving so much love!!! He’s our “one big hug” guy. We are so grateful. SO GRATEFUL! The past few days have been so crazy….so REAL….so terrifying…..yet SO beautiful. I wouldn’t wish that experience on anyone, though I am somehow grateful for it. God knows why this whole thing had to happen to us and we have yet to figure it out. I know I reflect on it constantly. My only prayer is that some way….some how…..we will all be better because of it.
Blessings to you and yours. Thank you once again for all the prayers and well wishes.
*pictures will come soon*
Hayden wanted his brother and sister to visit so badly. He waited and waited and tried to stay awake until they got there. He fell asleep about 15 minutes before they got there. We couldn’t wake him for nothing!
So we made sure we took pictures to prove they DID come visit him like he wanted.
Hayden’s first trip outside of his room. His legs were still a little too weak to walk on so he got the “medwagon”:
And just before we left John asked if Hayden could maybe meet a helicopter pilot. They took it a million steps further in invited him to the roof to meet the pilot AND sit in the helicopter. Hayden LOVED that!
And then we went home with a safe bill of health!
Thank you so much for all of your prayers!
Just 24 hours ago we were faced with the most devestating news a parents could ever receive – aside from death itself . Our Hayden was literally fighting for his life against a disease they saw to be HLH. There were many tests that needed to be done and the results could not be completely confirmed until a bone marrow sample was taken. They couldn’t take this right away because Hayden’s blood levels were toxically low. But from what they saw under the microscope they assumed it to be HLH and would thus proceed with very agressive treatment (HLH is a severely aggressive disease and could kill him if not treated right away). So that was the plan. Build his blood levels up for a bone marrow test this morning followed by a chemotherapy drug (along with 2 others). They assumed they would find HLH. However, the little fighter’s body began producing a good antibody that has not been linked to any HLH cases which made them think that maybe it wasn’t HLH and it could be a form of anemia. Again, the bone marrow test would confirm either way. Our hopes were lifted with this news.
Hayden underwent a little procedure this morning and the tests have come back negative for HLH and positive for anemia. PRAISE GOD. He is being transfered (as we speak) out of the PICU and into a regular peds room where they will begin his treatment, monitor his progress, and hopefully discharge him before the end of next week.
I cannot even express my gratitude to God for this ginormous miracle he has granted our family. And I know with every fiber of my being that it is exactly that…….a MIRACLE. Hayden was dying. I held his limp unresponsive body in my arms, I saw his blood levels, and I heard from the doctors what that all could mean. He was fighting. And all we could do was pray and love. I want to thank everyone for all those prayers that stormed the gates of heaven. Because of them, because of the mercy and love of Our Lord, because of our love for Hayden, and because of the fantastic knowledge of several doctors, Hayden is here and safe and alert and WILL GET WELL again.
Thank you. With all of my heart, thank you.
Dearest Friends (online and off),
I am writing this post from the pediatric ICU of MeritCare Hospital in Fargo, ND. This morning I took Hayden to the clinic because of his lethargia and pastey color. They immediately sent him via ambulance to Fargo where his condition has been diagnosed as HLH. I won’t even try to write out what that stands for (right now), but all I know is my little boy is very very sick. VERY SICK. HLH is a very rare blood disease which attacks the red blood cells. It literally causes the white blood cells to “eat or burn” the red ones. His body is fighting against itself…..and losing (right now). We need prayers. Lots of them. He got very sick very fast….within 36 hours. And the doctors are trying very hard to stablize him enough to undergo a form of chemotherapy that will kill off this disease……hopefully before it kills him. Chemo starts tomorrow morning. Please please please storm heaven with prayer…..join us in pleading with God for Hayden’s life. The survival rate is only 50/50. It is very fast acting, very fatal, and very rare. And Hayden is very young and not very strong right now. I beg you…..PRAY!