Happy New Year! The last couple of weeks have just flown by. We had a good Christmas and New Year, and the kids are enjoying their winter break. We have one more Christmas to celebrate in Iowa this coming weekend with my dad. Brad is flying to Colorado this morning to spend six days with his best friend, Nathan, and his second family. I’m very excited he gets this opportunity – not as excited as he is! – but also very nervous to put him on a plane by himself. It’s probably a good thing Travis is taking him to the airport and not me because I’m sure I would cry and that would make Brad more nervous. So instead I’m at working counting down the hours until he leaves and then I’ll be staring at my phone waiting for him to call and say he is safely with the Peeples. I know they will have a wonderful time and are going snowboarding too which will be a first for Brad. Sidney and Trevor are doing well and enjoying time with their friends over the break too. And Ryan is the same. He’s still having lots of seizures but is full of nosey kisses and loves his new toys from Santa.
As we head into a new year, we are facing two birthdays with Travis and me both turning 40. I know, old! Travis just had his birthday last week; we celebrated the day with his parents eating too much, going to see Jack Reacher, playing games and watching a movie on the couch. It was actually a really nice day and Travis said it was a great way to turn 40. Our sweet daughter is throwing us a 40th birthday party on January 12th at our house (I turn 40 on the 25th) with the help of family and a couple of friends. This was all her idea and she has done all the planning which is pretty amazing for a 13 yr old; she is a gem and so very thoughtful. I still can’t believe we are both turning 40 but here we are. So with a new year and a new decade, we’ve decided this is the year to be healthy. That’s our focus as a family for the year – to be healthy, eat well and exercise. Travis and I both need to lose some extra pounds and want to be a good example for our kids.
And speaking of kids, sweet Ryan is hanging in there. He is oblivious to holidays, opening presents, celebrations and such. This year we are focusing on his quality of life and keeping him happy and healthy. We are looking into palliative care for him and I will call Children’s next week to set up an appointment. Palliative care on their website is defined as this:
The diagnosis of a child’s life threatening or life limiting illness can thrust a family into a maze of confusing medical terms, fear and heartache. Children’s Hospital & Medical Center recognizes the difficulties these families face and offers Hand in Hand, a palliative care program. Its team members work together with families in decision-making and support for physical, emotional, social and spiritual needs. The program seeks to prevent and relieve distress and promote best quality of life for patients and their families throughout the course of illness.
If you chose to participate in Hand in Hand, your goals and wishes for your child and family will be honored and incorporated into all care. Our purpose is to assist you in enhancing the quality of life for you and your child. Our multidisciplinary staff will offer comprehensive and compassionate care for the entire family.
It goes on to say the following which is exactly where we are at right now with the decision to not try any more medications because the negative affects of the meds outweight the chance of anything positive coming from them. So instead we are doing what we can to focus on his happiness and the emotional health of our family to face whatever comes next.
Doing To and Doing For
When treatments and decisions get complicated there is a question that can be helpful. “Does this treatment do something for my child, or do something to my child?” This question recognizes that sometimes a treatment may be medically possible, but doesn’t really help the child overall. For example, it may be possible to straighten a child’s bone, but if they will never use their arm or leg for other reasons, the surgery may not make sense. With each treatment, in addition to asking about harms and benefits, you can ask if it is doing something for or to your child.
So pray with us and for us please as we try to figure out what is the best approach to Ryan’s health care that will meet his needs and also maintain a good quality of life for him. We know his seizures are malignant and control is out of reach as it has been for a long time; we simply want to enjoy the life he has, the life we have together and make the best of every day. It’s a very emotional decision to make but we know with our Heavenly Father leading us, it will work out as it should. And please, do not take this the wrong way and think we are putting him on hospice and buying a grave site. It couldn’t be farther from the truth. We hope we have many wonderful, happy years ahead with him and are simply looking into making sure his symptoms and quality of life are managed and kept as our first priority. Palliative care is NOT hospice! It is a new way of approaching his health care from here on out so instead of looking for the next medication or procedure to try and instead of looking into experimental trials (he’s not a lab rat) we are simply going to treat symptoms and pain and any other complications that arise.
This is the day the Lord has made; let us rejoice and be glad in it! ~ Psalm 118:24