T-Minus One Week

Hey All Kirsten here... per usual things are a bit nuts in our world so I figured I'd give you a quick update of where things stand.
Last weekend we stayed in DC and had a number of fun activities planned here is a brief summary.
Friday Evening we saw all of our old friends at an annual fundraiser hosted on the roof top of Charlie Palmer's Steak House. For non-native DC folks, this is possibly the best view of the city with the capitol building in full view. We have attended this event for three years and ran into folks who we haven't seen since last year when Madeleine wasn't doing well at all. You could tell people were nervous to walk up to us not knowing what we would say when they asked about our daughter. We were happy to report everything is going famously! One of the highlights for me was running into a woman we met last year from the Children's Hospital development office who I once again offered to help in any way we possibly can. Brent and I continue to owe everything to CNMC and any small gesture we can do would be more than worth it in our book.
Saturday morning Brent's family from TN, Bill and Bernice came for breakfast. It was great to introduce them to Madeleine and catch up with them since it had been 3 long years. I cooked breakfast and I gave them the whole treatment with fire alarms and all. I tried to make one of my Aunt Jen's breakfast casseroles and I almost had a panic attack trying to determine whether the eggs were cooked. I hope I haven't scared Bill and Bernice to the point of not wanting to eat my food again, I'll know if the next time they come they offer to go out to eat!

After they left we had a lovely day of putting on sweatpants and laying on the couch to watch both of our teams lose miserably, in my case on prime time national television. As I see it, at least PSU didn't wait to break my heart in November and in some ways I'd like to thank them for giving me some free time this fall! JK - I'll always watch.

Sunday we worked on the house b/c we are hosting a baby shower for our good friends Becky and Steve. The highlight from Sunday was when Brent's beloved Lions finally won a football game. With a minute to go Brent was holding Madeleine in his lap and I turned to him to ask if I needed to take her for fear he may toss her if they lost the game in a last second play. Needless to say they won (sorry skins fans) and our phone immediately rang off the hook....

Yesterday we had two doctors visits GI and pediatrician. Our GI doctor was amazed at her progress and she looked like a nourished kid! It's one of those comments that makes you wonder, well what did she look like before? While it bruises my ego, I know what she is saying and I am happy that we have now arrived at nourished. We are condensing feeds to 14 hrs a day. This is WONDERFUL news b/c it now means that our ventilator weans are now aligned with our feeding weans. She is on the vent at night and during naps and we are now on that schedule for feedings as well. It was somewhat annoying to have to drag the feeding pump around when she was off the pump and often times we forgot (shhh don't tell the doctors). The plan post surgery is to start going towards a more normal formula, bolus feeds and then many many moons from now real food. I'll talk about how mouth feeding is going later. We are making painfully slow strides but I have been directed to not get frustrated because I will project that on Madeleine and it will delay things even longer - so alas I'll swallow it and keep it to myself :-) This too shall pass right?

Our pediatrician was great and was thrilled to see how well she was doing. We reviewed all of our doctors visits since we last saw her in June and she got her RSV shot and her flu shot. Madeleine let out a very loud angry cry when she got the shots, something we rarely hear. I know this will sound very weird to parents of typically developing children, but I love to hear her cry like that. When she has to hyperventilate to get the air to scream some more... It makes me smile. I know I sound evil, but the root is in I love the fact that she CAN do it, that she has the lung capacity to really let loose.

OK --- for those who are still reading here is the best news. She is now (drum roll please) 17lbs, 8oz. We gained well over a pound since our last weight check! She is in the 50th percentile in length on the Down Syndrome growth chart and 25th percentile for weight. Let me put this in perspective... The first 14 months of life - WE WERN'T ON THE CHART. As our GI doc said yesterday - you wish your bank account had that kind of growth --- ain't that the truth!

We have one crazy weekend followed by one wild week leading up to next Friday aka Surgery day. They estimated she will be in house for one week putting her estimated arrival home on 10/16. My birthday is the 19th so all I want is to have my birthday dinner with my little girl in her highchair....

Take care folks - have a beautiful fall weekend. We'll post next week.

PS - My uncle took amazing pictures when we saw him a few weeks back.... I have not posted them on purpose b/c I want our parents to get a gift I have been working on prior to sending it out to the masses...