I got home Tuesday night at 5:45pm and I was beat! It was just Andrew greeting me, Ollie was at my mom’s, Lily and Andi were with Ms. Sharon at home and I was so happy to see them all! 5 days was a long time to be away, but what a great get away …
Dear friends, If anything ever happens to me, please take turns cleaning my floors until Andrew finds either a new wife or a live in house cleaner. For my children’s sake, please. Love,Kim who will be cleaning floors for days.
I wanted to share a post from a fabulous CDKL5 mom who lives in Australia and had a beautiful son with CDKL5 and has twin daughters with CDKL5. Because of her family the gene was identified and now kids are able to be diagnosed all across the world. They are the pioneers in CDKL5 and …
Fall break is 2 and a half weeks long. 2 and a half long weeks. We spent Wednesday of last week to Saturday in Greer and it was beautiful! My parents had the kids for a day and Andrew and I stayed at one of their rental cabins and we had a great break. We …
Man, if love hurts, parenting is down right excruciatingly painful! Emotionally and physically!Lily’s seizures are back. She is sleeping again, eating just fine. Not sick. Everything is fine and she is up to two grand mals a day again. Suck it. I hate seizures and the only thing I probably hate more is the medication …
Today started with a 9am appointment at Ortho Clinic. My mom had a Dr appointment so I had to take all 3. Luckily Lily’s fabulous PT came to the appointment and 1st was an X-Ray. The appointment was a 2nd opinion about the scoliosis and bracing. I couldn’t have the other two wild animals in …
Please vote daily for IFCR in the Pepsi Refresh Project! You can vote easily from my blog or from http://CDKL5.com and also text daily 102973 to 73774.Lily has seizures every single day of her life. Every single day. Lily can’t say one word. She can’t feed herself. CDKL5 stole everything from her and we just …
Just wanted a happy post and let everyone know the grand mals are not back! They were here that day Lily decided sleeping wasn’t for her and left when she finally started to sleep peacefully again. We have keep this as a top prayer for us and it appears to have been answered. All us …
Lily has not been sleeping, then last night she had a huge grand mal, then became inconsolable then she had another big one. Sharon (her awesome care giver) fed her a light meal, gave her dinner meds and a quick bath and we put her to bed and she did sleep all night. I am …
When you think yeah things are gonna slow down they don’t. Or they do so much that you’re unmotivated to do anything. I’ve been dealing with so much lately and I am exhausted. Physically, emotionally drained. When I am struggling in life I go straight to writing and I have been, but it just hasn’t …
Calm Amongst the Chaos 