Girlscouts Game NIght

 

More March Madness

 

Random March Pics

 

Developemental Pediatrician

Emmalee had her Developmental Evaluation today. Emmalee has significant delays of developmental Milestones. There are referrals in the works for early intervention and we are hoping her Medicaid will kick in over the next 6 weeks. She has grown out of her leg braces and will be fitted for new ones. Her Hypotonia is her main struggle and continues to cause her to tire out faster than most kiddos her age. Her internal organs, specifically her digestive organs, are affected more severely and require her to be on medications that can have adverse side effects. We are continuing with feeding therapy and guidance from her dietician to help with her PED (Pediatric Feeding Disorder) and providing her proper nutrition and hydration. She has sensory disturbances/sensory processing and integration disorder. There are still concerns that she has staring spells with decreased attentiveness. She had an alarming staring spell today while being evaluated and it was extremely hard to snap her out of it. We will follow up with her neurologist…again. We discussed the gene mutation on her DPF2 gene and she suggested we seriously look into getting her a more full and extensive test. She is hoping we can get more definitive answers. We know she is a carrier of Myotonic Dystrophy and has a gene Mutation on the specific gene that causes Coffin Siris Syndrome. She recently completed 16 weeks of therapy. We are taking a break from Physical and occupational therapy. Emmalee is currently in Speech and feeding therapy. She is such a precious little bug and we cannot get enough of her. We are starting to get into the terrific twos but are working with her to self regulate, communicate and reset. She responds amazingly to taking a break on her rug in her room. She is easy going, easy to love and loves us with her whole heart. She is our miracle and a precious gift. She has taught us all so much about strength and perseverance. So excited to be along for this incredible ride.

Cute Kids

 So incredibly grateful for these three beautiful blessings in our life.

Family Playdate

Dinner and Games with the Ayelsworths

 

Anniversary

23 years and counting!!!! Patrick and I were instantly drawn to one another and began dating while in high school. We have made many incredible and fun memories since then. He will always be my best friend. We continue to make eachother laugh, smile and lift one another up in love and are spiritually connected. Every passing day is better than the last. Here’s to another 23 years and beyond!!! Love you Creepy!

OMSI