Monday, November 19, 2018
Update on Molly and Charley
Molly has been having seizure episodes lately, we go back to the neurologist in Feb but in the meantime we keep adjusting meds to help her find the right dose. In the past 2 months she has gained over 10lb which is a HUGE deal for Molly, however the struggle is to keep enough meds in her system w/ her weight gain! She was way under weight and the old med was responsible for that. She was on an adult dose of TOPOMAX which the Doctor coined as "dopomax." Molly is suffering from seizures as a direct result of her time spent on ECMO. They say now ECMO patients are treated for seizures while on ECMO and for years afterwards...………. medicine evolves so much in just 8 years. ECMO can cause brain bleeds in babies and is hard on their little body, her brain has some "injury" spots and that is where her seizures are stemming from. There has been talk of removing them but its in the very early stages. This is where Charley comes in. Just Friday Molly was up in the middle of the night talking out of her head, if she wouldn't have been laughing hysterically I wouldn't have heard her to wake up. She then started pacing and finally threw up very violently for apx 30 minutes...……...so what does this have to do with Charley? She struggled to breathe, it was terrible to see. She has asthma and tends to want to breathe in her vomit prior to her body being done retching……..this is the case when she is seizing and she can be in her room unbeknownst to anyone and struggling....this is how Charley girl will help! She will alert us that Molly is in trouble and we will be right with her. She is also being trained to help Molly with anxiety. She has been struggling for the last few months with debilitating anxiety. She can't handle when I leave the house, she completely breaks down and can't breathe. Yes, she goes everywhere with me or knows the exact time she will see me...…...Charley will help bring her some peace during times of high anxiety. She is very fearful she won't have one of us (Myself, Moran, Mitch or Macy) around when she has a seizure, she's getting to the age where she understands the gravity of the situation. We do not tend to sleep well at home (We .. meaning Moran and I) and we are on high alert most days trying to decide if an episode is that she ate something wrong, the flu, an anxiety attack, a seizure, etc! Parenting is hard, its hard for everyone... I don't know if we are doing it right, I feel like we fail daily and I feel like someone forgot to hand us the manual on how to deal with all of this. Charley needs to come home and if you are reading this blog please please share our GFM page to get the cause out there. I wish I didn't have to ask for you to share our campaign but I wish MORE that this was not Molly's journey. Thank you Thank you to all who have shared our campaign and thank you to those who have given out of the kindness of their heart, it means the world!
https://www.gofundme.com/a9cw5-bring-charley-home&rcid=r01-15426574767-59ebef4243eb4d57&pc=ot_co_campmgmt_w
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