Sunday, February 14, 2016
There's a medical saying "when you hear hoof beats, think horses, not zebras." However, in Kreed's case, he has always been a zebra and in the past week, we know how rare of a zebra he is. So rare his doctor said you won't find another person in the state of Colorado with it. There are few people over all in the world with it.
For those that don't know, Kreed's development was fairly normal until he was 3. Kreed spoke. Had great motor control. Was a smiling, happy, rambunctious three year old. Then over the course of a year, Kreed lost everything. Motor control. All speech and language. Everything. Gone.
Fast forward years later and things continue to go wrong in his body. Non-stop. Every single year he is hit with something new. He has had specialists follow him his whole life, most scratching their heads. He never fit a box. Never fits any box. Looks like autism, but not quite. Looks like so many things but not really. And his continual decline in health led many to believe it was mitochondrial or generic. But still no one could find it. No one could quite put their finger on it. Tests have always been run. MRI's, exnome sequencing, CAT scans, blood work, lumbar punctures. The list is endless. While everyone can find the diagnosis of the year, no one could find the thing that ties it all together.
Then we moved to Colorado. Kreed has continued his decline, which also seems to have accelerated. More wrong in less time. More doctors and tests. Then one day, he loses the ability to walk completely. We are devastated and have no idea what has become of our life, his life. So we take him the Children's Hospital of Colorado.
They are just as confused. They are just as lost to Kreed's sudden decline, but they want to find it. A world renowned metabolics Doctor comes to his room and starts to go through his records which we brought with us. And with the odds against it, he finds a pattern. The pattern leads to some tests. The tests lead to a possible diagnosis. After all these years and all these tests, one doctor, in one state, saw something no one else ever has.
So here we are, waiting on some final tests to determine exactly what Kreed has. But it's the reason for his developmental delay, his neuropathy, seizures and a few other issues. Something he was born with that no one knew. And it was wreaked havoc in his body, not letting him live a normal life. And now we wait, to see if there is treatment and if there is, what that treatment can do for him, if anything.
All these years we just wanted to know. We wanted to know what was taking our sweet boy from us, what was taking his mobility and motor skills. What took his speech forever. So we are sitting at Day 10 in the hospital, waiting to hear the next plan and the new diagnosis. Waiting to hear what life has in store for us next and what will happen to Kreed for the future.
This picture depicts the area in Kreed's body with the dysfunction. We are waiting for the final diagnosis, could be one of five or six things or a new presentation of it.
And this is the boy we hope to get back with treatment.
And this is the state that held the one doctor (out of two) in the United States who even has a clue about this dysfunction in the body. Talk about luck in moving.
Tuesday, February 2, 2016
The night before.
It's the night before we possibly admit Kreed to the hospital. So many thoughts run through our hearts and mind. And fear. So much fear. Fear the doctors won't listen to us. Fear that he will get worse. Fear for what his true diagnosis is. Fear of the unknown. We have no idea what caused Kreed to cease walking a day and a half ago. Or what started his hand tremors a month ago. Or why he cries or why he holds his legs out to us to tell us they hurt. We fear.
So tonight is the night before. Tomorrow we have our checklist: medication, Bipap, clothes, food, medical records etc. We will gather and get ready. We will look at each other and ask if we're really doing this. Going into the unknown, for an unknown diagnosis and an unknown length of hospital stay. Are we doing this? We know we are- he lays in pain day after day and shows us his pain. We look at each other and we know we are doing this.
The night before I'm in the living room sleeping while his Bipap and oxygen machine are providing the night sounds because the only place he could sleep was his comfy green chair. So I sit out here worried and googling what could have possibly taken our son's ability to walk. His ability to be even remotely independent. His ability to communicate.
Today was so hard. He is completely wheelchair bound and he is now a full grown man almost. Transferring him from his wheelchair takes two people and even then it's difficult. So we fear. The unknown. Is this our life? Did our life just drastically change? Has he lost the ability to walk? What's happened? We don't know. So this night before is a mind trip. Of so many thoughts and feelings that get so jumbled. The anxiety is through the roof. The only peace is knowing he has finally slept after two days.
It's the night before and I don't know if I can sleep. So much unknown. So much unclear. So much could happen. All we know is Kreed is in pain and deteriorating before our very eyes and there is nothing we can do to stop it. Can the doctors? Can they see past his lack of ability to communicate? Can they see him, a boy of 18 who is probably more scared than we are because he doesn't understand why he suddenly can't walk? Can you even imagine losing the ability to function and not being able to tell a single soul? This is what keeps me up at night. Always.
It's the night before and all I can do is worry and think and research. And hope- always hope- that there will be a brighter day. But right now, in this very moment I fear. For his life, his ability to walk and if the doctors will be able to help.
This is the night before.