Thursday, September 26, 2013

Circle it and Cross it Out

This Boy! He is truly amazing. The other day at dinner, he saw a Longhorn skull on the wall and said " this a Georgia O'Keefe?"

He says funny things like "Count Me In!" when we ask if he wants a milkshake and "of course I did", when asked if he did a chore, or "Bingo!" when we answer one of his questions correctly.

He is so smart and has an excellent memory and he constantly amazes us. His little mind is always going and sometimes I have to tell him to relax and calm his mind. I get exhausted sometimes thinking about all that is going on in his head.

He does get nervous and he has chewed his little nails since he was two years old. I actually got out of the habit of even paying attention to whether or not he needed his nails trimmed. The other morning I was holding his hand and I noticed that his nails were actually quite long.
I said "When did you stop biting your nails?"
Boy: "I quit when I crossed it out..."...he went on to talk about other things and I reeled him back in.
Me: "what do you mean 'crossed it out'?"
Now this is where it gets amazing...
Boy: "I just decided I didn't want to do it anymore, so I drew a picture of it, I circled it and then I crossed it out. Then I stopped doing it."

Maybe its because he is mine...but I find this to be a fairly grown up way of dealing with things and a pretty interesting concept for a 6 year old child. Well, maybe not so grown up, because very few grown ups could actually stop doing whatever it was they crossed out.

I think it is incredible that he made this decision to stop nail biting all by himself, and took it upon himself to figure out a way to deal with it without ever mentioning it to us.

He is one insightful kid and I think we could all learn something from his simple concept. So...many months ago by girlfriend taught me to look at what I wanted and circle it. So, I mentally have circled a Christmas card photo for 2013 with Auggie in it since last year. NOW, I have a new way to mentally deal with things I no longer want in my life. Picture it, circle it and then Cross it out.

So, in the wise words of my 6 year old: "Just cross it out"

Here Comes the Dawn

So...the dreaded day approached. I had yet another sleepless night as I tried not to think about last year and focus only on the amazing little boy in front of us. We had to wake early and load the kids in the car for the early appointment in Kansas City...and as we drove, this beautiful site was ahead of us. I truly was in awe of the amazing sun rising. The song, "here comes the sun..." played in my mind and everything just seemed peaceful. It was just another revelation of the blessings and miracles that are new every morning.

Our pulmonology appointment was less eventful than I hoped. They were actually very impressed with our thriving Auggie. Of course, Auggie didn't cough during the visit. But Dr. Escobar did decide to order a chest x-ray. He talked extensively about lymphangectasia and other lymphatic issues that effect the lungs. He said these diagnosis have a wide spectrum of presentations and many remain asymptomatic throughout life. We may go on for CT in a few weeks when we visit again. We also have an appt with a vascular lymphatic doctor on Oct. 7. On one hand, this is a lot of back and forth to Kansas City ahead of us...on the other hand, its a lot closer than Philadelphia was to us during pregnancy, and the outlook is much more positive. So I welcome it. Overall, I feel like no matter what challenges we may have ahead, that every little thing is gonna be alright. So I won't worry. God's Got This!

Since we had to bring the whole family with us, we made a nice day trip of Kansas City. We went to SeaLife and Legoland and ate at a place called Fritz's where a train delivers your food to the table. The kids had a grand time and can't wait to visit again.

When the day was done, we picked up our Grandma Mille who came from Oregon for a visit. We are so blessed to have her with us this week.

Grandma Mille and Emily ride the train at the city park in downtown Wamego

Fritz's Restaurant (turn your head sideways)

Sea Life 

Tuesday, September 24, 2013


Tomorrow marks the one year anniversary of the worst day of my life. It was the day we sat in silence as doctors studied our son.  It was the day that doctors told us our son would not survive. It was the day we were told that the standard of care for his condition was termination, and that would end his suffering and avoid prolonging ours.  It was the first time I had ever heard of non-immune hydrops. It was the beginning of many months of sleepless nights and travel and doctors visits and ultrasounds and searching the internet for hope and praying and begging and pleading and........ This day marked the end of joy in my pregnancy. It took away all of my innocence that pregnancy was this beautiful thing that could be trusted. It took away my innocence that losing a child only happens to other people. It took away the notion that I truly had any control over my life.

I've been dreading this day.  Not only because of all of that, but also because it is the same day we drive to Kansas City to take that same sweet baby boy, the boy who lived, to the pulomonogist. We still know little about the chyle leak that caused his hydrops, or the lymphatic malformation that causes his residual lymphedema. We know he is healthy and meeting all of his milestones. His arm does not seem to hold him back or cause him discomfort. But he does has a very odd cough that occurs frequently and does not seem to be related to any illness. He coughs when he laughs. He coughs when he cries. He coughs when he gets frustrated. Sometimes I think he is fine and this is just the result of having sick lungs in utero. Other time I feel my chest tighten and wonder if I am being naive and that we have many more mountains ahead of us. So...its time to get checked out and find out.

On one hand, maybe this office visit being on this anniversary is a good thing. Certainly we have been blessed with this little man who is affectionately called a "Little Wave" in my support group, due to overcoming an ocean of odds to be with us. This visit does remind us of how far we have come this year. On the other hand, I am scared, nervous and anxious. If you can say a prayer for us, it would be appreciated.