Monday, May 6, 2013

Metal Test Results

Two weeks have passed since starting the blog and I can't believe the amount of support and following it has gathered. The blog has been visited over 20,000 times and I've received dozens of emails and comments of support and prayer. As our journey continues, I hope this following will only grow and continue to share the lessons I've learned from Landon's life. I am so blessed to know him and I want to share my good fortune with anyone who will listen (or read in this case).

Our two hour cry sessions continued last night as usual. Starting in the middle of his 3 am feeding and lasting until just after 5, I really can't understand what he gets so upset about. It's almost like colic but just at a very strange hour of the day. I think part of the problem is that he works himself into a frenzy and then has a hard time calming down. I'm sure Karen thinks I'm just not rocking/holding him right because almost as soon as I handed him over this morning he calmed down. I essentially passed out as soon as he calmed and unfortunately missed going to my local church this morning. I know it's important to catch up on sleep but it is always nice to have fellowship and worship with the families I grew up with. Several people at my Elmwood church have been family friends for half a century or more.

After they left church, my grandpa Charles and his friend Peg dropped by to meet Landon. It was a nice moment for me to have four generations of Shrader men sitting together at the same time. Landon is the first male great-grandson for either of my grandparents and that is a special memory for me to have. We plan on visiting my grandpa Richard this coming week sometime, assuming we can work around doctor appointments. My aunt Sherri, uncle Ron, and cousin Morgan all made a visit today as well as Mikaela, Brandon, and Sophie. I think I might have been bad company due to fatigue but I'm sure they will all forgive me.

Karen received a call this afternoon that our metal whole blood test results were in. Landon's copper and ceruloplasmin levels were normal, ruling out Menke's Disease. This was not unexpected but still warrants a sigh of relief. Our best chance at a diagnosis anywhere in the future is with the results of the micro-array ran last week. We should get the test results sometime this week, most likely after Wednesday. We have an appointment with a genetics specialist tomorrow morning and hopefully his exam will shed some light on Landon's condition and give us a more definitive prognosis. We are well prepared for more "we just don't know" answers.

With each day, it is obvious that Landon is getting stronger and more stable. While he still has occasional seizures, his sucking has improved, his is awake longer, and he tolerates more and more food. His cry is even stronger. An unfortunate side effect of this added strength is that he doesn't sound much like a goat anymore but I suppose we can keep the nickname anyway. Hopefully as he continues to improve he will begin to sleep more during the night. I can say with confidence that as much as I love the little man, there are times during his morning cry that I just need to pass him to someone else. Still, sleepless nights are a small price to pay for the blessings he brings.

Today I would like to close with a couple of photos taken by my brother-in-law Brandon today. Finally, a chance to see how cute Landon really is!

Sophie and Landon

Little Goat

4 comments:

  1. Very precious! Trent you always share such encouraging words! God bless!!

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  2. He is such a beautiful boy! So happy to hear that things are going better, and sending prayers for continued improvements in Landon!

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  3. OMG THAT BOY IS JUST BEAUTIFUL! He is going to continue to make strides. I am uplifted to put more of my life in God's hands just by reading your blog. I hope there will be many many more great days ahead for Landon.

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