I have not been meaning to keep everyone in the dark about Logan and his progress. I don’t really know what is going on with me. I think after 18 months of this being my reality its still really tough to write about him and his progress (or lack their of). When I found out that his oxygen levels were a bit higher and that we could hold off on the Fontan for the winter, it was the biggest gift….I thought. But it has just given me more time to worry about the Fontan. It is going to be here in a blink of an eye and everyday that Logan gets bigger and stronger and shows more and more personality his next OHS is going to just get tougher and tougher and tougher.
It literally makes me sick. It makes me sick to think about them having to re-cut open his chest (his nearly perfect incision is barely visible right now) It makes me sick that he will have to spend hours and hours getting IVs, lines, and blood draws. About 4 weeks ago I had to make an ER trip for myself, I was having a horrible asthma attack (thanks autumn…) and had to get an IV of steroids. When the nurse went to go get the stuff to start the line I held my breath and prepared myself for a big ordeal. It wasn’t…it took 2 mn. and it hit me how different the perspective is. For those of you that haven’t experienced this getting an IV, or PICC line in a baby with a complex heart condition (bad veins) it HORRIBLE. It takes hours. It takes 3-4 people holding your baby down while they stick him over and over and over again trying to get access. Most of the time with Logan we would go thru 2-4 people before someone could “get him” many times they would have to use an ultrasound machine just to find his small frail veins.
I just cannot believe that we have to go thru this again.
But right now…Logan is so happy. He is getting less and less scared of people every day. He even lets other people hold him now! He jibber jabbers constantly which is the sweetest sound to my ears. He still cannot sit up unsupported or crawl, but he has compensated and scoots on his back. He gets around quite well this way. He loves to sit in his high chair and “eat” dinner with us. He more or less pushes a few crackers around but loves feeling like a part of the family.
His brother Ethan just turned 3 this last week. He is an amazing little boy with an amazing talent for guitar playing. I know what your thinking…but I am serious he actually plays. Scott is teaching him notes! Ethan is started to understand more and more about Logan as well. Last week we had a new babysitter here and one of the first things he did was lift up his shirt, point to his chest, and tell the sitter that Logan “has boo boo on chest” I had to explain to Ethan that tomorrow a doctor has to come (really a nurse) to give Logan a boo boo on his leg (his RSV shots) Ethan is very upset by all this and doesn’t want Logan to get anymore boo boos. Its just heartbreaking.
I wish too…that Logan didn’t have to get anymore boo boos.
Ethan with his prized Green Guitar that he got from my parents.
And Ethan taking a break after a jam session with Dad!!!
Now for Logie Pics….highlights from the last 2 months
Loves that he can now sit up in the Bumbo. It has given him a whole new perspective on life.
He loves to sit at the table. This is him “eating” he maybe eats 3-4 tiny bites of a cracker. I have found that he will eat a handful of goldfish though. I have tried all different types of foods and he still is being stubborn about the food being dry and crumbly.
About 4 weeks ago he grabbed a sippy cup from the couch and just started drinking it. Luckily I had my handy IPhone near by and actually caught the moment!!! His first time drinking from a sippy cup. Even with the new sippy cup he will only drink apple juice at room temperature. Nothing cold nothing warm. Nothing too sweet, nothing thick (tried smoothies and milk) he is VERY finicky when it comes to textures, flavors, and pretty much anything new. Starting to wonder about Sensory Processing Disorder.
In turns of sleeping…that has gotten a little better. As he is starting to eat more at a time (10 goldfish instead of 1) he will go a little longer in the night without getting hungry. I think we are just stuck in the newborn eating/sleeping schedule because he doesn’t eat food. I mean that is why we start our babies on cereal and food is to help them sleep thru the night…please Logan just eat!!!
In terms of physical development he is still like an infant. But mentally he has turned into a little boy and it is so exciting to see his personality come out. He loves music like his brother and gets so excited and moves his head back and forth whenever something comes on.
Logan has an echo on Thurs…PLEASE let there be no surprises….please… oh and almost forgot to mention. He weighs in at 18.5 pounds now. Not sure if that is good or bad. We will find out on Thurs.