Co-Date Night

On Tuesday night, my brother and sister-in-law, Andrew and Vanessa, joined Kc and I on a date night. Vanessa's mother, Gramma, came over to my parent's house and watched Jonah while Nana took care of Noah. It was SO nice to get out with friends and have a "grown-up" meal. We went to Max's Bistro and immediately ordered the sweet potato fries. Yumm-O. The food was excellent, martinis were divine and the fellowship with friends/family was amazing. Thanks for spending the evening with us! Let's do it again when you're back in Fresno!

Family Weekend!!!

Last weekend was an amazing couple of days filled with food, family and fun. On Thursday evening, my brother and sister-in-law from Iowa, Drew and Vanessa, flew into town with their two month old son, Jonah. It was so good to see them - the last time we were together was March - and finally meet my new nephew. Later that night, or more accurately...early the next morning, my other brother and sister-in-law from Susanville, Adam and Melissa, drove into town with their fifteen month old son, Hunter. It was great to see them as well, especially because Hunter is now walking - and what a cute walk he has. The entire Smith Family was together with all three grandsons. I think Nana and Papa were walking on air!!!

On Saturday morning, Drew and Vanessa dedicated Jonah to the Lord. It was a beautifully intimate ceremony in my parents living room, where Jonah was surrounded by friends and family who will help him along the way in his walk with God.Later that evening, the Smith Family had a photo shoot. Cori Derksen of Derksen Photography came out to the house and shot some AMAZING pictures. If anyone in the Fresno area is looking for a photographer, I HIGHLY recommend her. We were sad to see the weekend come to an end, especially because the Susanville Smiths had to travel back home. It makes me look forward to the next time we're all together, however. Hopefully then the little boys can start to play together.

Nana - 1, Mama - 1, Daddy - 0

On Friday morning, Noah and I were doing tummy time. Well actually, Noah was doing tummy time, I was doing everything I could to keep him interested and happy. He usually lays on his Boppy or a small pillow to help him keep his weight off his trach. I have been trying to slowly get him used to laying directly on the floor, but he DOES NOT like it.After about ten minutes of laying on the pillow, I removed it and tried to get my little man to push up on his arms. Noah would have none of that and started to cry. He turned his head from side to side as a way of protesting being flat. I was trying to help him push up on his arms when I realized that I didn't hear him breathing. I quickly rolled him over and noticed his hands and lips were turning blue. While twisting about, Noah had pulled his trach out and was unable to breathe. As fast as I could I grabbed the end of the trach and shoved it back in. Hearing Mr. Man start to breathe again was the sweetest sound ever. He lay in front of me sucking in the precious air and staring at me with love in his eye.

It was a very scary moment, but we can now joke that both Nana and I have replaced trachs. Now...it's Daddy's turn.

Fraser Syndrome...Officially

Back in April, our geneticist, Dr. Curry, found a scientist in Germany who is currently studying the genes that cause Fraser Syndrome. There are two known genes that cause over 50% of the cases, but the rest of the cases are caused by unknown genes. Kc, Noah, and I send blood samples off to Germany for the scientist to analyze. Before Ryan was cremated we saved a few samples of his DNA, so we were able to send that to Germany as well.

On Monday, we met with Dr. Curry and she delivered the results from Germany. Noah officially has Fraser Syndrome. Both Kc and I have a common recessive gene, FRAS1, that we passed onto Ryan and Noah.

Coincidentally, we got the unofficial diagnosis of Fraser Syndrome from Dr. Curry on a Monday in February. Maybe I need to be more selective about the days I make appointments with doctors...especially Dr. Curry! I suppose, however, in a weird way it is nice to have an official diagnosis. As we continue to venture on the journey, God has provided us with everything we could possible need. We have amazing doctors, awesome friends, and loving families surrounding us each and every day. The answers we are seeking are slowly being provided and the help we need is always there. God is bigger than I could possibly fathom and loves us even more. Wow!

Rice Cereal

Now that Noah is six months old, we have been given the go-ahead to try some rice cereal. Normally, Noah feeds a little less than an ounce of milk by mouth and the rest is fed through his G-Tube. Because he has long since refused to suck from a bottle as well as from a pacifier (Wubba is gone but not forgotten) we squirt small amounts of the milk into his mouth from a syringe. It is a painful process for me because Mr. Man HATES to swallow and whines and cries the entire time it takes to feed by mouth (about five minutes).

I suppose a small part of me was holding out hope that once Noah tastes "real" food, he will all of a sudden look at me with joy in his eye and want to swallow more. Alas, this was not the case. Here Noah is quite interested in what Mama is so excited about.
We were both cautiously optimistic that what was on the spoon would go in quickly and easily.Once the food hit his mouth, however, Noah sang a different tune. The wincing, crying, gagging and whining continued for three spoonfuls. At this point, Mama could not take it anymore and the feeding stopped.Well...we'll keep on trying, perhaps with some pureed fruit, but I'm less optimistic that Noah Man will be eating by mouth any time soon.