So this is it, this is my first blog post in a couple of years. Just like Will with his roller skates, I'm trying something new. I'm thinking that the first one back is the hardest, I hope at least. For a pretty private person this is huge for me and my journey. A journey that I'm determined to take into myself and my life. I have a whole lot of New Year's resolutions and this is one of them. To blog about me and our family so that one day we can look back and remember this precious time. My previous posts about Sophia have been both heart wrenching and beautiful to go back and read, but I am so glad they're there.

So, resolution #1-Start to blog again, #2- To be healthy! As many of you may know, I have been a slave to the night shift for 5 years. That is 5 years too long. All of Will's life and all of our marriage I have been a cranky and sleep deprived space cadet. I start a new chapter on January 21st....day shift! This is a real game changer and I cannot wait to be normal again. I'm hoping day shift can help with a lot of things, my moods, my diet, and my tan (being asleep during the day can really make a girl pale)! I'm ready to eat more salads and drink less caffeine in hopes of becoming the ulimate ME. A better person, mother, and wife. Watch out, once I hit day shift I'm going to be unstoppable! #3-To pick up a new hobby. My wonderful husband bought me an amazing Nikon camera for Christmas because he knew that I wanted to get into photography. Unfortunaley, I'm really into instant gratification and I haven't yet taken the time to read and learn how to use it to it's full capacity, but so far I love it. My favorite subject so far is Will as I'm sure you'll be able to tell. #4, 5, 6- Stop yelling, be more patient, and no more curse words. I don't think those need any explanation :) If my boy can be brave, so can I!

My, it's been a long time since we've written an update. I guess no news is good news! We've had a pretty great month. Sophia is doing really well and is still at home with us. We have learned the art of prevention with her. If something is just a little funny, or she has a low grade temp, we take her to the doctor before it gets too bad. So far it's working! She is tolerating more and more formula (my milk supply is almost gone) and weighs almost 11 pounds. She is taking a little by mouth and does really well with that as well! She smiles a ton, grabs at toys, and is cooing all the time, all of which I must say are about the cutest things ever. It still amazes me when she acts like a normal baby. We are working on strengthening her neck so that she can hold up her head. Its really hard for her with the low muscle tone and because her head is bigger due to the hydrocephalus, but she's making progress.

Will has made some progress too. Mike and Will went to Indianapolis over New Year's to visit family and Will came back a different kid. He is soooo active and is constantly climbing, jumping, spinning, yelling, moving. I thought he was all over the place before! He is also talking more. He says "What is that?" constantly and is trying to recite the alphabet (sorta, not really). He is really sweet with Sophia and calls her "Sia". He is just an all around good kid and we're really proud of him and how he's handled this difficult transition.

I was supposed to go back to work this weekend, but got sick. We've all been passing something back and forth and trying to keep it away from Sophia. I'm actually looking forward to doing something somewhat normal again.

We got some not so good news on Monday from the neurosurgeon. After another head ultrasound, they told us that Sophia is going to need the shunt. Her hydrocephalus isn't getting any worse, but its also not getting any better. Now, they're trying to decide what the best course of action is. She will go and get a cardiac cath in a few weeks to measure the pressure in her lungs and to see how she is growing into her pulmonary band and it will also help decide what anesthesia is appropriate and so forth and then she'll get the shunt at some point after that. We're obviously not very happy about that, but if she needs it.... So, when you think and pray about Sophia, if you could think specifically about her brain, maybe we can will it to heal itself. Stranger things have happened!

Love to everybody and Happy New Year, it's gonna be a good one!

Home again, home again

As anticipated, we got to bring Sophia home yesterday. While at the hospital we transitioned her to breastmilk which has made a world of difference. Her digestive tract is working much better and she hasn't thrown up at all (which I think is what caused her to aspirate in the first place). Now we are just hunkering down and preparing for a wonderful Christmas. Happy Holidays to everybody. We love you!

Here we are again

So, we are back in the hospital :(. Sophia wasn't quite acting right on Sunday and sure enough that night she got another temperature. We took her to the ER at Memorial (where I work) and they then transported her by ambulance back to UCSF. The whole ordeal was pretty traumatic. The moment we got back up to the floor where we had spent so much time, I lost it. It's really like reliving a nightmare. Hopefully, this time the nightmare will be shorter. She has aspiration pneumonia again and after a few days of IV antibiotics, she is on the mend. There is buzz about us leaving as early as Friday. The most frustrating part of this all is that we did everything we could at home to prevent this from happening. Because of the Down Syndrome, Sophia has low muscle tone everywhere. This includes the sphincter that is supposed to keep stomach acid down, so unfortunately, I'm not sure if this is entirely preventable. Other than this, she is doing very well. She is moving around more, trying to grab at toys, and getting bigger. She is now able to be given breast milk through her G tube instead on Monogen, so I think that will help with her stomach issues. We are shooting to be out of here by the end of this week, take her home, and continue with the wonderful time we were having!