Month: February 2019

Connor always loved playing make-believe, especially with me, his Mama. I think every mother of little boys looks forward to the day her son says he wants to marry you or in Connor’s case, “I’M GONNA MARRY YOU!”. He used to tell me this all the time and it was the sweetest thing ever. Tom would explain to him that I was already married to him and Connor didn’t care one bit. He was determined to marry me no matter what, even if it meant sending Dad away! Connor and I had planned every little detail. We were going to have a pumpkin themed wedding. Connor loved pumpkins and everything Halloween!!! He would wear his Superman costume of course. I would wear a Wonder Woman costume and have a beautiful yellow dandelion bouquet. Connor always picked dandelions out of the yard for me! We would play the best music; Bruno Mars, Michael Jackson, CCR, Lynyrd Skynrd, Tom Petty, The Nightmare Before Christmas soundtrack, etc. We would dance to our song, “Have You Ever Seen the Rain” by CCR. We would have a picnic dinner and sit on blankets on the grass. The food was the most important thing! There would be hotdogs, lots of pickles, fruit salad, root beer, and a big pumpkin cake. And we would live happily ever after, driving off into the sunset in his little blue Cozy Coupe car!

When we found out about Connor’s diagnosis, we made a bucket list. The last thing on the list was keeping the promise I made to Connor to have a make-believe wedding and we did just that. On Wednesday February 20, 2019, we got married at home in Connor’s hospital bed. Tom officiated for us and I can’t put into words how much it meant to me. I had picked out a very special song when Connor was little for the mother-son dance that I would play and we would dance to at his wedding, if he ever wanted to get married. I played this song on my phone as I took his sweet little hand in mine and we “danced”.

As many of you know, Connor has had a lot of ups and downs lately and he is struggling more often. Tom and I have had some of the most difficult conversations with doctors that a parent can have but it is important to us to prepare as much as possible for Connor’s ever-changing needs. One of the biggest decisions we made is to start hospice now. His hospice nurse is coming on Monday to see him and create a regular schedule, which can change week to week based on his specific needs. This will allow Connor to be in the comfort of his own home as much as possible and eliminate many exhausting trips to the ER. They will take care of all of Connor’s pain management needs and provide any needed durable medical equipment such as a hospital bed with seizure pads and a Hoyer lift. They can even do some x-rays if needed and all of his blood draws at home! Through hospice, we will have an RN, CNA, Social Worker, and a Spiritual Care Provider. Volunteers (who can help in a variety of ways including Respite Care) are also available by request. Also, it just so happens that one of the on call nurses for hospice apparently lives a few doors down from us! We are so happy that we are able to keep Connor’s Primary Care Provider and Patient Care Coordinator through St. Luke’s! They know him best and we trust them to help us make big decisions concerning Connor’s care.

We were approved for 20 hrs./week for Personal Care Services and are hoping that will start next week some time. This person will basically be there to assist me in all of Connor’s daily needs such as brushing teeth, bathing, dressing, diaper changes, transfers, stretches, etc. They can also travel with us to doctor’s appointments and care for Connor while we focus on talking to the doctor. That would be a huge help!

Last week, we met with Connor’s new Neurologist who was highly recommended to us by friends. We were impressed with him and his approach to Connor’s care. He had brand new ideas and together, we came up with not one, but three possible plans moving forward to get Connor’s new seizures under control. He wants the least amount of meds possible and we completely agree with that. We are changing the dose on Connor’s two current seizure meds with the goal of getting him to just one med if at all possible. If it works the way we want it to, he will have full seizure control and be more alert at the same time. If we can’t get seizure control on his current meds, we will try Epidiolex (the new FDA approved CBD oil). And we discussed Vagus Nerve Stimulator (VNS) therapy as a last resort, however we feel Connor is too weak to go through any surgery at this point. Due to the fact that Connor’s oxygen saturation levels have been dropping so much, Connor will be going in for a sleep study soon. This will tell us if he is having any kind of sleep apnea. His PCP thinks he may be having central sleep apnea due to his nuerodegenerative disease. Basically, when this happens, the brain doesn’t tell the body it’s time to take a breath. If that’s what’s happening, he will be put on CPAP which is positive pressure oxygen. Connor is also having trouble coughing or clearing his throat which really bothers him so we are looking into getting him a Cough Assist Vest.

As stressful and emotional as this has been for us lately, we know that God is lighting our path and surrounding us with all of the angels Connor needs. We want to thank our family, friends, and followers for all of the love, prayers, and positive thoughts. It is lifting us up and helping carry us through this more than you will ever know.

With Love,

Tom, Renee, Jake, and Connor