Today is a beautiful day! Which considering I just spent 4 hours in a car and 3 hours in hospital you wouldn’t think I would feel this way but I do!! Tyler had his MRI today. Something about spending the whole day with just him and Miller made me feel so good. Though there are many unknowns ahead of us I am so greatful for every moment. I sat in the back with Ty during the MRI while Miller dozed off in the waiting room. Just watching him for those two hours (cause there is literally nothing else to do back there), made me so nastolgic. Here he is I have a 12 year old man. Not a little boy anymore. We did it we raised one kid more than half way to adulthood success 😉. I have been trying to focus everyday on reasons to be greatful and today I feel so many. Chewed up shoes means dogs I love! Camper to clean means family memories to be made. Bills to pay means we are still making it! And best of all at the end of the day all 5 of us are together a family and that is all that matters. Life is good. Focus on all the gifts you have. Spend one whole week being greatful for every thing that comes your way! I guarantee it will change you!
Just got done freezing and watching Tyler run a 200 and 400 meter dash. He did great!!! It’s crazy isn’t it all of the things we worry about in a day. That broke down car. Those stacks of bills that never seem to go away. The never ending fights between kids. Then something simple puts it all in perspective. Hearing Layla fumble through over the rainbow on the piano for months , then one day out of the blue she gets it perfect. Listening to Cassie take a shower with the dog while she sings and he growls. Or watching Tyler run tonight and seeing the excitement in his eyes when he finished. It takes my breath away. And although my husband would never admit it his eyes are full of tears often times when these little things happen. So put down those phones, forget those bills, and look around you. I’m guessing there is something that will take your breath away 💕
These past two weeks have been a roller coaster of emotions. When Layla was 12 months we knew something wasn’t quite right with her legs. She always stumbled and didn’t walk unless we held her hand. When she did walk she had an “egg beat”‘pattern. At her wellness visit her pediatrician sent us to an orthopedic doctor who recommended some orthotics. They seemed to do the trick and life went on. Another year passed and we went for our yearly check with the same orthopedic. He was watching Layla play sitting on the floor in her W as he called it they way she always did. He turned to me and said I think your daughter has CP. My heart sank I ran into the waiting room to grab my husband who was sitting with our other two kids. He saw me crying and panicked. He kept saying does she need surgery. I explained what the doctor said and he could not understand why I was so upset. I had worked in long term care. I knew what CP was. She might have cognitive problems we don’t know about. She might not ever live on her own. My mind was wandering to a thousand different horrible thoughts which I am ashamed of now knowing some very special people who have CP who made the biggest impact on my life. After a trip to UW Madison children’s hospital and then settling with a neurologist in Green Bay we were told she had a genetic condition called Hereditary Spastic paraplegia. We knew it would be a struggle for her for life but it was not something that would take her life and for that we were so great full. So we have been every 4 months since she was 4 doing Botox injections as well as casting and orthotics when needed. Sometimes her legs look great sometimes she looks like a pretzel 😉. But all in all she’s doing very well. Then around 2 months ago we noticed our oldest Ty walking on his tippy toes a lot. So I randomly checked his legs and he had clonus . My heart sank again this is an abnormal reflex we hear way to much during Layla exam. So back to Dr. Edgar for an office visit for another child. This time he seemed more serious than he was with Layla. Having two children siblings with the hereditary gene from my side seemed to be a game changer and he felt very strongly that we needed to get the genetic test done as well as a MRI of the spine. He told us that he wanted to give us a better picture of how the disease would progress for the kids. So here we are two weeks from that day waiting for news one way or another. Tylers MRI and genetic test is Monday so we will hopefully have the results of that test within 2 weeks. We are praying that the gene mutation is SPG4 this had the least progression and the most manageable symptoms for the kids in the future. We have struggled with the decision for genetic testing for sometime as we always said we never wanted Layla or now Ty to choose not to have children because of this disease. But in the end we decided if it could possibly help us better manage their symptoms it was worth it. So anyone who may be reading this we ask for lots of prayers for the coming weeks? Especially for me (mom) I have been knows to be a little anxious!