Sunday, August 30, 2009

Last Weekend

Last weekend, Grandma and Grandpa Jackson came down to Fresno to spend some time with family and introduce their new dog, Biscuit. Isn't he just the cutest little thing?Kc, Noah and I headed over to Aunt Sharon and Uncle Gary's house for a lovely visit and some amazing, homemade bierocks. It was so nice to spend time with the Jackson side of the family.

Saturday, August 29, 2009

Three Things

About three things I am certain…


First, Noah has the longest eyelashes I have ever seen...


Second, he makes me smile and laugh as much as his Daddy...


Third, I am unconditionally and irrevocably in love with him.

Friday, August 28, 2009

Seven Months

It's amazing what a couple of months, a few surgeries and loads of love will do for a little guy. Noah is seven months old now and doing great! His current stats:

Weight: 19 pounds 3 ounces
Length: 27 1/2 inches Our little guy is working hard at sitting and can almost do it all by himself. He loves to roll around and play in his "gym". He currently puts just about everything in his mouth and has two bottom teeth that are just about to break through. We're looking forward to his colostomy closure surgery on September 9 and can't wait for our first poopie diaper. Looking back over the past few months, it truly is amazing how much Mr. Man has grown!

Thursday, August 27, 2009

Jumper

Noah's cousin Hunter highly recommended getting a jumper - it was one of his most favorite things to play with when he was "younger". We just recently put the jumper up and Noah gave it a whirl. He is not "jumping" in it yet but enjoys hanging out and spinning around while Mama and Daddy cook dinner.

video

Tuesday, August 25, 2009

It takes a village

On Monday, I returned to work for for the 2009 - 2010 school year. Although the first day of school for the students was Monday, the staff actually reported back a few days prior for meetings and in-services. It was a very sad day for me but I know that Noah will be well cared for.

It truly takes a village to raise a child, especially one with special needs. Because of Noah's trach and G-tube, he cannot go to an average daycare but there is a daycare center for medically fragile children that is opening up in Fresno. We are in the process of filling out all the paperwork - and boy is there a lot of paperwork - and getting the funding squared away, but are hopeful that Noah will start attending Loretta's Little Miracles on Mondays and Tuesdays. Wednesdays and Thursdays belong to Nana. She has graciously agreed to watch Mr. Man two days a week and Noah couldn't be happier. On Fridays, Noah gets to hang out at home with our good friend Lindsay. She is trach and g-tube trained and will soon be studying to become a nurse.

There are so many people in Noah's life who love and care for him. Although I would much rather be the one taking care of him full time, I am confident that those around him will do an awesome job.

Thursday, August 20, 2009

Bootless...well almost

On Monday, Noah saw his Orthopaedic surgeon. Dr. Gerardi was very pleased with Noah's feet and told us that he only has to wear his boots 12 hours a day. We are all SO happy... but Noah especially. He has spent the last few days laying on his back, putting his feet high in the air and grabbing on to them. He is quite fascinated with his own feet and loves to grab and hold them. His parents are quite fascinated with them as well and love to tickle them. Here's to our bootless boy!

Tuesday, August 18, 2009

Sleeping

Apparently Noah is afraid of the possibility of an earthquake in the Central Valley, because he always holds on to his Pack-n-Play while sleeping.This is the position you will find him in during most naps. Too cute!!

Monday, August 17, 2009

Tacos with the Horns

On Sunday, the Jackson family headed out to spend some time with a small part of the large Horn Family. Colleen and Gary welcomed us into their house with open arms and prepared a gorgeous taco feast for us. Amy, David, Micah and Claire came over and brought their beautiful lab Daisy over.Sierra had such a great time playing with Daisy. They ran after balls, ran after each other, swam in the pool and generally just tired themselves out. Amy and I agree that a tired dog is a happy dog.After dinner, Gary took Noah over to their swing set and gave Mr. Man his first push. Noah LOVED the swing and thought he'd like to spend forever there. Gary was so gentle and patient while he pushed and pushed and pushed and pushed Noah. After tacos, brownies and ice cream, swimming, playing, swinging and talking, the evening had to come to an end. Little Miss Spencer came around to say good-night to everyone before she left with her parents, Colleen and Ross.All in all, it was a great evening and I enjoyed getting to know the Horns a bit better. Thanks so much!

Sunday, August 16, 2009

Cousins...Part Two

Before Drew, Vanessa and Jonah left for Iowa, we got a picture of the two cousins together. Jonah was a bit tired and having some difficulty falling asleep, so "Mr. Grumpy" was rearing it's ugly head. When he was set down on the chair, the wailing began. Noah does not like to hear other babies crying and once he was placed on the chair, his crying began also. I think it was so cute that both cousins were screaming for their first picture together.Hopefully the next picture together will be a bit happier.

Saturday, August 15, 2009

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!

Friday, August 14, 2009

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.

Sunday, August 9, 2009

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.

Wednesday, August 5, 2009

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!

Tuesday, August 4, 2009

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.

Our Family

Our Family

Daddy & Noah

Daddy & Noah

Kc & Rebecca

Kc & Rebecca

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