Sunday, August 22, 2010

The Summer of Firsts

The Law's have had a busy and HOT summer to share with you. It's about time, right?!? We have travelled a bit, seen some long distance family and hit some major milestones that Graham is going to show off for you. It has definitely been The Summer of Firsts. Everyday it seems Graham is doing something new. Of course, we thought the first time he stuck his finger in his ear was just as amazing as him sitting up. So at this point G-Man thinks he's pretty hot stuff. I've compiled some pictures and videos to try and chronicle some of what we've done. Enjoy.


Loved the sand on my toes, but the Lake Michigan water was just too cold!


Hanging with Mom on a pontoon ride.


Had a blast with Daddy swimming in the pool.

And drum roll please.....

I'm sitting up like a pro!
He's been gabbing up a storm.
video
Graham has also gotten his two bottom teeth. Those are a little harder to capture on camera since we only catch glimpses with his big smiles. All in all, we are blessed with a very happy baby. It seems like he's having as much fun discovering all this new stuff as we are watching it. It just keeps getting better and better.
I often wonder at times if these moments are heightened because of what we witnessed Graham go through the first few months of his life. With each passing day, I feel our time at Riley becomes a distant memory as we make new ones. With that being said, there isn't a day that goes by that I don't look at my son and still have a little piece of my heart break for the babies and families robbed of getting to experience these firsts with their little angels. As much as I would like to forget some of the horrible things we saw Graham go through, I know it brings an appreciation for the miracle that our family was so fortunately granted.

There is much to report as well when it comes to Graham's medical issues. First off, he has been off his feeding tube for almost 4 weeks now. Good news is he never lost weight when we took that away. We are working with a nutritionist through the First Steps orgaization that Graham receives his therapies through. She has been so useful helping us supplement the calories Graham is not getting through the tube. It's been trying because our stubborn little G-Man refuses to take milk from a bottle. That can be common with nursing babies, but would've been so much easier transtioning off the tube. We didn't see a weight gain the first couple weeks, but we are now seeing one slowly but surely. We add calories to the solids that he eats with a product called Duocal and monitor his weight pretty closely. So...we are officially tube free.

A visit to see Dr. West last week is forcing us to start to look toward Graham's upcoming surgery now set for next summer. During this visit we also met with a plastic surgeon who will be involved in placing tissue expanders in G's stomach muscles surrounding the omphalocele (which has grown to the size of a softball). This will be quite a process, one in which I'm glad we have 7 months to mentally and emotionally prepare for. Starting two months before the "Big Surgery" they will place a port and the expanders in Graham. For 6-8 weeks, EVERY week, we will take Graham in to have more saline added to the expanders. It will cause him discomfort and a general anethetic will be used for each of these procedures. The reason we are doing all this is so when they put Graham's liver back into his abdomen, the muscles will be big enough to cover and attach together in front. It also eliminates them having to use any artificial material instead of his own muscle. He will have plenty of skin to cover it with the new skin he has formed covering the omphalocele right now.

Hope you've enjoyed a little glimpse into our wonderful world of Graham. This little guy turned our worlds upside down and still continues to do so by bringing so much joy into our lives.

6 comments:

  1. Enjoy? Definitely! Sure, there's worry about for the future, but so much to enjoy now.

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  2. Great news on the "Graham Front"!! He's in our daily prayers and will be until things are normal in his little world. Enjoy your firsts and thanks for sharing some of them with all of us!
    Love, John & Edie

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  3. Grandma talked an hour and still didn't tell us all the joy Graham has brought to them. Makes seeing and hearing about the grandbaby on this blog all the more precious to us. Keep updating us so we can smile along with you!
    Keep Up The Progress, Graham.....Nancy & Bob

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  4. Graham looks so good Katie! I'm so glad he's doing well off the feeding tube! I'm also glad you have some time before the next surgery so he'll have plenty of time to just grow and develop. It's similar for us too that the days of Riley seem so far away. Some times it seems like I had a completely different baby. We definitely appreciate each day and each milestone a ton more now than we ever would have before though.

    take care!

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  5. We love the pictures. So glad you three are enjoying your summer. Looking forward to seeing Graham in his snow boots! Love, Jim & Mylien

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  6. I am the grandmommy of an almost 6 wk old precious baby girl born with a giant O. She is still in the NICU in San Antonio, Tx. She was just fitted with a prothesis so that she can hopefully go home soon. We saw in your photos that you transported Graham in a car seat and are curious exactly how you did this and what type of car seat you used. My daughter's name is Brooke, her daughter is Harper. Her blog is peekinourworld.blogspot.com Any information you could give them would be greatly appreciated.
    Graham is adorable and it is so encouraging to see a fellow O baby thriving and doing so well. The very best to you and your sweet family.
    Janet

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