2015 is here!

Happy New Year everyone. So far so good. Really (knock on wood - don't be getting any ideas 2015! We had a wonderful Christmas here at home with the most beautiful tree ever, happy (healthy) kiddos and my mom came to visit. She taught the girls chess and now they ask to play almost every day. Santa brought both of them the 2 gifts they really wanted - a mermaid tail and a robot dog. And Macsen got cars, cars and more cars. They were all very happy. Aaron was able to pick up some shifts at work and wasn't forced to use a lot of vacation to cover unpaid lay off days - he is hording his vacation days for Macsen's upcoming surgery this summer.
I have spent all day on the phone with different medical equipment suppliers, lactation consultants from all over, and our insurance company. A few friends suggested I ask about insurance coverage for a new pump and it turns out they will cover buying a new electric pump. Woot! I would ultimately like to rent a medical grade pump that is much better - I use the one at CHOP whenever we are inpatient or have appointments and my supply always goes up. Insurance doesn't cover all the cost of renting one of those though so we have to weigh the pros and cons. I had to research what medical diagnosis necessitate insurance paying for 80% of the rental - insurance company wouldn't tell me of course. I had to go through all Macsen's paperwork citing every code from every specialists\ until I gave them the magic one. Surprisingly HLHS wouldn't work but 783.3 - feeding difficulty would. Nuts. In the meantime a friend gave me her old pump so I wouldn't be without. Never in a million years would I have thought I would be looking to buy a new pump this late in the game but hey - we do what we must.
Macsen seems to be doing well. He's still slowly gaining - almost 26# now and not sure of height but I did have to put up several pairs of pants that are now too short. He is babbling more every day. He now has very clear signs for his sisters and asks for them when they are at school. He says "wawa" in addition to his "mama" and "uhoh." We are working specifically on vowel sounds with his speech therapists and it seems to be clicking better for him. He is running better - not falling as much. He is taking more solid food - infinitesimally more most days but to the trained eye - the desperate eye - it is definitely more. He makes all the animal sounds in his favorite books. If you stop and restart a movie he gets mad if you don't get it in the exact spot it was when it turned off - even if it has been an hour since it was turned off. And he is consistently pooping on the big potty. Not bad for barely 2 :) We are so proud of him.
We are STILL waiting to hear results of the lymphatic portion of his MRI from November - crazy to think we are going on 2 months of waiting. I also had to request all the records from that visit bc we have received nothing cardiac wise - just a letter from his neuro. There is an electronic site you can access to view test results but it has surprisingly little information on it. It's a shame because it really could be very helpful if I could see everything the office has access to - all MY son's medical information. Wasted opportunity and it would make my life easier.
I am struggling to find the motivation/time to work out. All this time at home doesn't help if it's with a tiny cling-on attached to me. 3 surefire ways to make Macsen stop playing sweetly and independently = 1)Try to have an important phone conversation. 2)Try to clean the house. Or 3)Try to put in a P90x video and start jumping and kicking wildly around the room. He comes like a shot "hold me, hold me." followed by tears and lately a full blown lying on the floor, arms waving, feet kicking, face purpling tantrum. He has also perfected the art of making me feel guilty - he drops his head and shoulders and sighs or when he really wants to pour it on he pokes his lip out, makes it quiver and silently sobs. The girls and I are complete suckers and give in everytime. We love that little stinker.