Love For Lucas

Lucas just turned 8 months on sat 2/27. This is something no child should experience. We thought we he was doing so good and then like before it came out of nowhere. Over the past month we had started noticing that Lucas was having minor issues. It started with head shaking and grabbing his head in pain. It has become an everyday on and off all day thing now. I thought it was due to all the constant weather changes as I know many Chiari suffers experience trouble with the weather. This past week he started choking on his bottles and then became uninterested in eating after 7 consecutive bottles and I instantly knew something was not right. He also holds his head to the right as though it is stiff. He had 2 sleep apnea episodes which I caught when he was sleeping next to me which I instantly made an appointment with his nuerosurgeon right away. Lucas sleeps with his mom next to him because he has to lay on his side propped up in order to sleep and not shake his head uncontrollably. He was seen on Friday 2/26 and with his symptoms and the fact his head is measuring larger than it should, they urgently admitted him and did an mri right away. His mri showed he had enlarged ventricles like before and fluid sacks on his brain. Also the syryngomyelia (syrinx ) has grown slightly in size which it either should have stayed the same or become smaller so that is of concern. He will be having another sedated mri with comtrast monday 2/29 first thing in the morning then a swallow study in the afternoon and sleep study in the evening. He will most likely be having surgery to correct this or attempt to correct it as it is affecting his daily life. We ask for prayers and any help that is able is greatly appreciated. Lindsay has yet to return to work from caring for Lucas from the last surgery. Food, gas, parking and trying to keep up while spending every second she has with him has become financially difficult but regardless we will get through and Our little family will shine. We will keep this updated and thank everyone for your support and prayers. Someday I plan to pay it forward to someone else who may be in need once we get over this hurdle. Lucas is a happy baby and deserves a pain free comfortable life and we will continue to do the best possible things we can to make it that way!!

Our beginning of this journey:

Lucas Gabriel Clemm was born 6/27/15 and is now just 3 days shy of 4 months old. He was born a happy healthy boy. What started out with what we thought was a common cold and congestion with Lucas, sadly has turned into more than we could have imagined. After hospitalization on October 10th and 11th and being released with improvement we ended back up on October 20th in the Pediatric Intensive Care Unit at Woman's and Children's Hospital in Buffalo NY where we currently are staying. He was at first on a ventilator helping him breathe but since has been able to keep up on his own. After several tests and Mri's it was found that he has Chiari malformation and syringomyelia will be undergoing brain and spinal surgery in the next several days. Please keep Lucas and our family in your thoughts and prayers as we start this rough unknown journey. He is one of the happiest good natured babies and doesn't deserve to go through any of this. His cooing and smiles can light up a room. Lindsay Clemm(mom), Sherry Berra (Nana) and Allyson Clemm (big sister) thank everyone for all the love and support we have been given thus far.



The bottom photo is from right before he had his decompression surgery in october