another update

Wouldn't you know it? I give a nice update on Claire only to have it followed-up by a trip to the hospital. Claire caught the cold that went around and it's landed her back in Doernbecher's for respiratory support. That said, she has not had seizures and is fairly interactive. We got in last night and will stay until she doesn't need high-flow O2 support.

more updates

We have Claire's lab results back. The neutropenia (ability to fight infection) is improving...good news!!! Claire's liver is showing stress but nothing the neurologist is worried about yet. Claire's blood showed elevated AST and stable ALT since her last labs. Claire does have bilirubin in her urine now but it is not yet at the concerning level. We will repeat these labs in 3 months unless we feel she needs them done earlier. So...good news!!!! Now just pray she gets over her cold quickly and without too much trouble. Thank you for your continued prayers & support.

update on Claire

Update on Claire: We had Claire's neurology and dietary appointments at Doernbecher's on Friday. We had yet more confirmation that Claire's condition is not hereditary. My wife shares a DNA substitution with Claire (which means it is not the source, otherwise Rebecca would share some kind of symptom). We have released Claire's medical records for yet another study. This one will sequence Claire's entire genome. Though we know it will not ultimately change Claire's condition or fate, we are hopeful the studies will help give insights to rare diseases such as hers.

Claire remains as stable as she has been in her life. Though this has been very nice for us, Claire is more lethargic and has not shown therapeutic mental or physical improvement. We may reduce her current Depakote drug level to try to improve your responsiveness. We await labs, but we are still concerned Depakote may also shut down Claire's liver. We will update as Claire's labs come back. Thank you for your well-wishes and ongoing prayers.

We are home

We came home...

Claire is home. As our Neurologist so appropriately stated, "With Claire it's like we all have to just hold hands and jump off the cliff together." You all know she is incredibly resilient and endlessly surprising. The Depakote appears to be giving her more than her typical honeymoon and as of yet there has been no change to her liver enzymes. That said, we brought her home with DNR paperwork. Although neither of us are thrilled with the risk of Claire passing away at home, Rebecca and I can't take the extended hospital stay any longer. We have many nurses and doctors we consider family now, but the stress of our family splitting time apart takes its toll. Claire is as stable as she has been in the last year. For that, we are grateful. We will keep you updated on Claire's status, particularly if she seems to decline. Thank you for your grace and prayers in the past weeks. For some, they choose to deal with such matters privately. However, I believe that drawing on your friendship and encouragement provides us with a strength we would not have otherwise. For those experiencing similar situations, I would ask that you lean on your friends and seek public outlets for your grief. God bless you all.

more updates

As you have seen from recent photos, Claire is surprising us with good days. Rebecca Hales and I would like to reiterate that our rational minds do not think this will necessarily last. However, we are now at a place where we must consider next steps. Tomorrow we will begin planning on how best to bring Claire home. We will likely use Hospice. I ask you to continue to pray for us. We need to make a plan that makes this as comfortable as possible for Claire if things turn for the worse while she is at home. Quite frankly, as experienced as we are with medicine, Hospice and Post Mortem planning is scary and stressful. But this long term hospital stay is waring thin. — at Doernbecher Children's Hospital.

small favor to ask

Hello, my name is Traci, I am a friend of the family... I do my best to keep this blog updated for Jacob and Rebecca to give them as much focus on Claire as possible. So this is me Traci, asking you, friends and family of the Hales to do me (them) a favor.  Three years ago my husband and I almost lost our son and my myself due to being born 12 weeks premature and other complications, through all the highs and lows we too were surrounded by prayers and support like Jacob and Rebecca. We asked this small favor and it blessed us in ways we never could have imagined... the Lord has put it on my heart to do this same thing for the Hales, but I need your help...  Could you send me an email with your first name and city, I will compile them all and it will be a comfort to see just how many people, even complete strangers, prayed for them... Send it to freckles279@hotmail.com.  Also pass this request along to others that you have shared this story with and are praying even if you don't know the Hales personally...
Thank you for your time, thank you for caring so much. Jacob and Rebecca's faith through these years is nothing short of inspiring and encouraging. Please take a moment to consider this request. May God bless you and your family with health and quality time with your own loved ones. 
Sincerely, Traci 

Claire's update

I apologize for the lack of update in a few days, but honestly, Claire is doing her typically thing of throwing us surprises that we weren't sure how to describe. She is stable and only had light seizure activity over the past 72 hours. We have been hesitant to share this as we don't wish it to be interpreted as great news, improvement, or progress. We suspect it is a honeymoon period from her newest drug Depakote. This has allowed us a reprieve, getting her exubated, and gaining us some quality time with Claire at her baseline. However, honeymoon periods rarely have lasted more than a week for Claire and there is still the substantial risk of liver failure in the near term. We plan on keeping Claire at Doernbecher's for at least this week and we will begin a re-evaluation on Friday, assuming she continues to do this well. Beware that Rebecca and I are thankful for this time but, noting Claire's history, we are not optimistic that the honeymoon will last much longer. Your prayers and outpouring of love has no doubt contributed to this reprieve. The support and kindnesses carry us forward each day. To that, I humbly thank you. We will keep you apprised as events occur.

Faced with

Rebecca and I are faced with the toughest challenge as parents. We have tried every medical treatment available to science to gain control of Claire's epilepsy. In the past, Claire would lose seizure control whenever she was sick. But more recently, Claire has had to come to the hospital and be intubated with no detectable reason other than drug levels becoming unstable. This is a sign that either her brain or liver (or both) gained tolerance to her meds. Last Thursday, after only a 27-hour stretch at home, Claire returned to the ICU and was re-intubated. In a last ditch effort to gain seizure control, we put Claire on Depakote, which in combination with her other anticonvulsants, places her at a high risk of liver failure. Claire has only had a maximum of 2 weeks seizure free on any medication. Having expended every medical option to try to give Claire a good life, we have come to the conclusion that constant seizing and intubating is not giving Claire the quality of life she so deserves. We have decided this will be her last visit to the ICU. We will not resuscitate or re-intubate her moving forward. If her recent patterns hold constant, we suspect that Claire is in her final days of life. We ask for your continued prayers for our strength and peace in this time.