Here we are...

Well believe it or not we made it to Ronald McDonald House last night! We arrived out of breath and overwhelmed but we made it! What a big feeling of heavy responsibility to have a table full of very important meds that have to be given at the right time in the right way as well as blood sugar testing and insulin. To say the least I considered turning back to the hospital. Just kidding. The feeling was one of freedom! Not sure how much I told you all about the feeding tube/drain drama but where it all got left was Dr C wanted her to have a feeding tube for another 3-4 days. I made my peace with the fact we were to continue a little more tube feeding as the original plan was 2-3 months worth of it. I prayed that night that God would lead the docs in what to do when her tube/drain got changed (even if they didn't understand themselves why they were doing it). The next day she went in for the procedure and came out with different than the doc asked - she only had a tiny button that can open into a drain if need be. I was stunned... It wasn't what the doc asked for. I inquired into the orders and it in fact said feeding tube too!! But it wasn't there! I told the IR team of the mistake but told them to leave "as is" until I had word from the surgeon that it "had" to be done again. Long story short the next day he came in and said, "Well it must have been providence for her to not end up with the feeding tube because I did in fact order one. But not to worry she is obviously ready to fly and we can stop tube feeding!"
I said under my breath, thank providence my foot, thank God! He knew and orchestrated the whole thing!

We are now at RMDH without tubes to worry about and that is so liberating! After we got all the meds organized and set all my iPhone alerts we had our first real meal. It's so different to be counting carbs and giving insulin coverage but it's only temporary. In fact, they dropped her long acting insulin another two units this morning! We are on our way!!

Today was are just relaxing, doing laundry, making greeting cards and watching movies. Just needing some mama and Ta' time. You know, without a medical team watching us breath ;)

What's next? Well, she has clinic appointments all through out the week until mid/end of June. After that, Dad should be done with surgery and recovering well to where me and the kids will come back home. That seems forever away but it's all just a moment in time. I am thankful that I have been given the opportunity to help my husband and child get past this ugly giant. God made it all possible and has given us the desire of our hearts!

-Prayers-
That Tasia will continue to eat well and not lose any weight. (So far so good)

That her digestion process will do what it needs to do - start to finish.

That she will continue to dodge some of the normal digestion pain and side effects of new re-routed belly. (So far she's only had some nausea this morning and that could have been cuz she took her meds before eating instead of after.)

That her recovery will continue to move along at a good rate and meds will be less and less.

That May 10th will come really fast! (When our boys join us!)

Thanks again for all your prayers! We love you all and will continue to keep you updated on our MN saga.

XOXO,
Jillian