Wednesday, April 24, 2013


Its been a long time since I posted...what can I say, I am busy. I went back to work on the 8th of April, I am managing our household, a puppy, and FOUR kids.  Its a full and lovely life.

Auguste is 10 weeks old. He is doing great. We took him to cardiologist last week and his PDA and pulmonary hypertension have fully resolved. His lymphedema to his left hand remain. He was seen by the phlebologist Dr Stambro, who specializes in lymphedema. He said Auggie is his youngest patient. He believes Auggie has a lymphatic malformation. Essentially he also thinks it is a close observation but told us that we are in it for " the long haul". We asked if he thought it would resolve and he said it would be the first time. He was really nice and recommends physical therapy with mld therapy. Unfortunately the best therapist for him isn't in our network and insurance will only cover 30%... So I have to make some calls and see what I can work out, otherwise we will have to use one of the therapist who mostly see the breast mastectomy patients rather than kids. Dr Stambro thinks we will start w therapy and wrappings and will eventually order custom sleeves. He does not know of we are out of water as far as effusions etc.. So still have to watch. Ugh. He also said that often the edema gets worse w puberty. We also need to be cautious and pray he doesnt ever injure the arm. Fortunately, he said that typically the only time you see deformations is when it is neglected and confident we will be right on tip of things. The meeting felt to be one of the most informative thus far.

We see infectious disease on Friday and can get some insight on our plans regarding his immune system.

He is really the sweetest baby evah!! He loves to cuddle and is starting to be very content watching the kids, and its much easier to get things done.

He is a big boy. He actually is 24 inches long and 13 lbs at his doctor visit a few weeks ago. Wowzers. What can I say, the boy likes to eat!

Mickey is in Kansas this week interviewing at Kansas State. Yes, you heard me correctly. This was a hard thing for me to take at first. I had said all along that Nebraska was off limits due to weather...Manhattan Kansas is only about an hour south...geographically speaking, no different than Nebraska. 

I know that Mickey has worked hard to get where he I have decided to seize the day. I believe we can use it as an opportunity to downsize and simplify our life. I am not going to work initially and may only go back part time for a while. We know that any move we make right now is only temporary, so why not use those years as an opportunity to really focus on the kids and each other. So no matter what happens, and where we end up next,  we are going to make it all about our family.

I am actually looking forward to taking an opportunity to slow down and be able to spend more time holding my babies and helping in Oliver's classroom, etc.  I also want to use these few years to do a few things I have not had the time to do, like writing, music and sewing.

I am not sure if Manhattan (Kansas) is the place we will go...there are some other potential things that I will fill you in on later. I am just praying that Mickey feels clear that whatever school he chooses is the best thing for him and for our family. Pray for us as we make so many changes in the near future.

Now, here are some pictures.