2019 ended with a number of challenges for us. Tanner was in the hospital twice with RSV and Rhinovirus and boy did they take a toll on him. He developed a movement disorder, of some sort, from the viruses, that as of today is still affecting him and It is worse than the seizures! Any time you touch him, move him, talk to him or anything, his whole body goes into crazy jerking movements that cause him to sweat profusely and often sends him into a seizure. In addition to that, our CNA (nurse) was assigned to a new case as of November 1 and the company we are working with has not found us a new one yet. we are going on 3 solid months of NO help for Tanner and we both work fulltime. When they can find a fill-in they send one but it's not all the time and constantly training a new person on how to take care of Tanner is often no better than caring for him ourselves. The company says our area is just hard to find good care in. In addition to that, we started the elevator install back in July. All though we were very excited, it has caused problem after problem and we still have NO working elevator. The contractor built the shaft almost a foot too small on one side and isn't willing to make it right, so before the elevator company can even install anything, we need a new contractor to come out and expand the shaft. Meaning our whole house needs to go back under major construction and we are in need of legal assistance as well! We want you to know that the money raised at Toasting Tanner 2018 ($26,000) was used towards the total elevator cost of $50,000 and we cannot thank you enough! Unfortunately, it could cost another $10k to fix the problem and another many thousands in legal help. And trust me when I tell you that Tanner is not getting any lighter! I was also diagnosed with psoriatic arthritis at the end of last year, after living with extreme pain for a year and a half, so carrying Tanner is a bigger challenge even for me right now. So when I say 2019 ended with a number of challenges, there you have it.
As 2020 is just starting, all of those challenges have followed us in addition to emotionally trying to make sense out of our friends getting ready for the loss of their CDKL5 child. The constant battle between your mind and your heart is very real and not everyone may even understand this. We always knew in the back of our minds that unless a cure was found, there was a good chance Tanner would not live forever. So we fight for a cure and we hope and pray we get it, but we prepare for the worst. but what does "prepare" even mean?
Tanner is still not 100% well and is still fighting some sort of cold. With no fever, there's really nothing a doctor or hospital can do for him that we can't. When mucus builds up in him, he can't clear it and without help it obstructs his ability to breathe. So to help clear out the excess mucus we put him on a vibrating vest every 4 hours. In addition, he gets a breathing treatment of albuterol and sometimes another one of salt water to help him cough. As that loosens everything up, we stand by ready to suction the mucus out. All the while keeping him on oxygen for extra comfort. Every 4 hours!! Last week he decided to pull all-nighters. He's pulled an all-nighter before and sleep disturbances are part of CDKL5 but he's never done it for 2 nights in a row. 48+ hours he was awake. that's 2 nights in a row of not closing his eyes for even a second. He was just too uncomfortable! I don't know how he did it. And then, finally, his body gave up from exhaustion and he fell asleep. Only this time, he stayed asleep for 40.5 hours! I'm guessing most of you have not experienced this with your child so I am here to tell you that your mind goes in a LOT of different directions when your child doesn't open his eyes in 40 hours. I thought to myself, "is this it? Is his body just shutting down? is this the sign of organ failure? is he really this exhausted?" Thankfully, he really was that exhausted and did wake up (thank you god), but was that my mind trying to "prepare" me for "one day"? Maybe. I posted in our CDKL5 group around the time Tanner had been asleep for about 36 hours and I asked the other parents for advise. I asked if there was something I was missing and if this really was a sign for something. Looking back on it now, my gut told me he was fine and was just exhausted but as a mom, your mind takes you to places you never knew you could go to. I have always been able to chase the "what if" and negative thoughts away with hope and positivity and strength and I hope I am able to continue that way. I truly hope that the challenges that followed us from 2019 will only bring us solutions in 2020. And for our sweet friends going thru what no one should ever have to go thru, all I can say is that we love you, we are devastated, we are here for you always and we will continue to fight. There is no rhyme or reason other than CDKL5. Well...F--- YOU CDKL5. Our kids deserve more, so bring on that cure!