Hokey Pokey

Do you remember the Hokey Pokey? I'm sure most of you do. I've noticed that our life feels a lot like the memorable childhood song right now, but without the fun music.  The verse that I would assign to our son's healthcare team would be...."You put your head in, you put your head out, your put your head in and you shake it all about...you do the Hokey Pokey and you turn your self around...that's what it's all about." Whereas, our designated verse would be "You put your whole self in, you put your whole self out, you put your whole self in and you shake it all about, you do the Hokey Pokey and you turn yourself around...that's what it's all about."- If this horrid feeling of questioning Kaden's future reminds me of a song,  then I must be struggling with my coping skills. I've accepted that we're up against so many battles to no feasible end. Well actually, I've accepted it at this very moment. I just may freak out later. Who knows? There is some bonafide truth to the "5 Cyles of Grieving". The most accurate statement of my frame of mind is this.... It is difficult and life changing to grieve over the loss of a loved one. I must say that it seems to be even more difficult to grieve over the hurdles of a loved one that is alive and struggling because there is no absolution. The grieving just cycles constantly.  Again, no absolution. I'm sure that's why so many people relate difficult times to emotional roller coasters.

 Seriously though, the past few months with Little Man have been in my mind, memory building songs, poems and memoirs. I don't know about you, but I know that sometimes when I read other peoples feelings manifested through writing, I sit back and ponder if I understood the authors intention of their written word. Some make sense and others simply don't. I do the best I can to explain what we're feeling, but there really are no words. Furthermore, I write for my own sanity and coincidentally you may find pertinent information that satisfies your curiousity about the well-being of our little boy.

Kaden's had an entirely new set of struggles added to the original issues. He started having seizures in February that at first glance seemed to be something else. In actuality, he is having seizures in addition to the Rolandic discharges as previously diagnosed. For a short time he was consumed with migraines as well. We added in a new medication and it seems to help a bit. For this we are more than grateful. 

We spent a couple of days in the hospital this week to further investigate some of the new hurdles. The docs did a spinal tap and MRI under anesthesia. Kaden's MRI looked good, but his blood work and CSF leave much to be desired for our precious little guy. He is very anemic and there are a couple of other major concerns regarding his bone marrow, blood and full body neurotransmitters. We will see the hematology/ oncology team and cardiologist in the next 2 weeks. When we recieve definitive information from those two teams I will further explain our findings. He's been storming all week and dealing off and on with a "spinal headache". For now we know that Kaden has a Mitochondrial disease that is causing Dysautonomia, which most of you know has plagued him for almost 6 years. He will be 7 in September and is still tiny with very little appetite. Everything is starting to come together regarding his illness. He has been oxygen dependent again lately and we are working very hard to encourage him to eat and are closely monitoring his little heart.

Kaden almost finished his home-bound school semester already and as of Friday the 6th, he will be considered a 1st grader. He lost his 2 front teeth and looks quite adorable. He still laughs, enjoys the little things, and continues to remind countless people about the things in life that really matter. He has a special friend named Luna. She is patient with him and very loving. He also likes to play with Tyler who is a close friend of Kylee and Evan. Tyler is great at comforting Kaden and they love to hang out together.

So, I guess that's a wrap for now. 

We love you son. You make us proud.