Florida, Birthday, Lymphedema, Graduation, and Manhattan

Hello friends. I know I am getting slack on posting, but things have been a little busy these days. Laughing out loud at just how busy busy is. In March, we traveled to Florida for the kids Spring Break and had a great time visiting with family and friends. While we were there we had the opportunity to dedicate our sweet Auggie. We wanted family to be involved and on Easter Sunday we went to my Uncle Joel's church and had him dedicated by my Grandmother's baby brother, my Uncle David. Many family members were present including two of my Great Aunts, 4 of my Dad's brothers and their wives, both of my parents, my sister and her family. In attendance also was one of the many prayer groups that prayed for Auggie during our battle with hydrops. It was very special.

Upon returning back to Greenville, we celebrated Oliver's 6th birthday with The Critter Keeper. Our house was full of 17 children who all laughed and squealed as the Critter Keeper put on a show to remember with live snakes, giant roaches, all sorts of lizards and spiders. We had a great time.

Shortly after that I returned to work full time and Mickey treked around the States on interviews. He successfully defended his dissertation and officially became Dr. L. He accepted a position at Kansas State University as assistant professor of Special education. This is a very big deal for our family and at the end of July we will plan to cross the Mississippi and relocate our little/big family to Manhattan!!!! Manhattan, Kansas!!!!

Oliver graduated kindergarten last night and we had a wonderful but bittersweet time as we said goodbye to our Shannon Forest family. Our kids have been attending SFCS since Oliver was in K3 and we have made many wonderful friends. Oliver made us laugh out loud as he leaned on the railing during the songs, doing the motions, but in a very laid back, too cool for school manner. When they called his name he threw his head back and walked very purposefully across the stage to get his diploma, almost as if saying "Okay Okay, I'm coming".

Auggie is 3 1/2 months old now. Can you believe it??? Time truly flies when you are having fun. We went to our first physical therapy appointment today and I learned a lot but know there is still a lot to learn. The lymphedema was originally in only his left hand, but now extends to his shoulder and across his chest. She even felt his face is somewhat assymetric. I felt this way when he was a newborn, and no one else really agreed, so at least now someone noticed it as well. If we stay on top of things he should have no complications, although unfortunately, everyone continues to tell us to watch for shortness of breath indicating pleural effusions as well as continuing to watch for abdominal ascites. This is hard to hear because I want to put all of that behind us and not continually have that concern. It was neat learning how to massage his arm and chest and back to help facilitate lymphatic drainage. She fitted him with a very smock, mock sleeve, to get him used to wearing something on his arm...which he will need to get used to. She taught me about the precautions necessary and frankly, they are scary. Basically, he cannot have any puncture, bug bites, burns, sunburns, or injury to this arm or it could cause infection and other complications.
However, she was less convinced that this would never resolve, in fact thinking it was entirely possible for him to "grow into" his lymphnodes.

So, as you see....life has been full and this is why my blogging is sporadic. Enjoy some pictures...until next time.

Eliot at the ranch

Aunt Jenny and Anna before Indigo Girls concert

peach blossoms

Auggie

Drive in with the cousins to watch the Croods

running to Crazy Pa before lunch

Lego Land

Aunt Marge and Crazy Pa with Auggie

Auggie and cousin Aurora

hiking

Aunt Martha

The Critter Keeper

Oliver's K5 graduation

with Teacher Mrs. Harkey

with Teacher Mrs. Todd

Updates

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 is...so 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.