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Carterís diagnosis - GRIN1 genetic mutation *UPDATE*

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Carterís diagnosis - GRIN1 genetic mutation *UPDATE*

Old 11-26-2017, 05:08 PM
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Originally Posted by olsaltydog View Post
I'm not always sure how to respond on threads like this, words typed just don't always seem to come out the way you want them to, but good to hear you guys are getting more information. Your little man looks adorable and adventurous. If nothing else, you guys will always have THT family in your corner. Will keep you and yours in our thoughts and hope your future holds calm seas and favorable winds.
Well said....
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Old 11-26-2017, 06:21 PM
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God bless and good luck. He is a very good looking kid.
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Old 04-06-2018, 04:05 AM
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Sending prayers for Carter and ya'll.
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Old 04-06-2018, 08:56 AM
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From the pictures it looks like you have a good looking, happy and active kid. Keep up the good work mom and dad.
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Old 04-06-2018, 09:04 AM
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He is adorable.

My manager has a disabled son, he will never live on his own and will always need care in some form. He was already a stand-up guy but I can tell that his son and the life lessons that he has had from the experience has made him a much stronger leader, a more patient person, much more appreciative of the things he has going for him and has a very good relationship with his wife. Some of it will be a struggle, some of it will be a blessing. You sound like a stand-up Dad and husband.
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Old 04-06-2018, 01:37 PM
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I think Carter and his parents are awesome! You all are true models to us all.
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Old 04-07-2018, 04:14 AM
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Thanks again everyone. I can’t believe it, but Carter will be two years old next week (4/14). It seems like yesterday when we were leaving the hospital with him. My man has really been exceeding everyone’s expectations lately. He began assisted sitting on his own (using his hands for balance) about 2 months ago. Now he can do two to three minutes of both assisted and unassisted sitting without falling over. Our living room floor and fireplace is completely padded because he won’t stay still. If he falls, he just rolls around some and sits right back up like it’s nothing. Diaper changes, medicine time and putting on clothes can be fun since he doesn’t fully understand “no” yet. His comprehension of certain words has expanded though, as well as his response to our voices. He knows the words for his bottle, solid food, pacifier, and medicine. Our voices will gather his attention, but I don’t think he has figured out his name yet coming from a stranger. We are making a lot of progress, but in small steps. He has been diagnosed with Cortical Visual Impairment (CVI). We went to Houston again, but this time to see a CVI specialist. She assessed him and showed us where he seems to fall on the CVI chart (0-10). We also learned about some new tools and techniques to use or build to help. There is a GRIN1 conference being held in Canada this summer that we will be attending. Europe was out of reach for us and many others, so one was set up for North American families. We’re excited as our journey continues.













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Old 04-07-2018, 04:25 AM
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Ya'll are incredible!!!!
God bless ya'll and Carter. He is a handsome young man and very lucky to have such awesome parents.
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Old 04-07-2018, 04:37 AM
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Amazing! Y'all are great parents and Carter is an amazing little man.
Love and healing to Carter and his family.
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Old 04-07-2018, 04:39 AM
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Beautiful lil' Guy!!!
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Old 04-07-2018, 05:57 AM
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Missed this thread somehow. What a great looking kid, those glasses are pretty cool!!

Sounds like you all are doing all the right things.
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Old 04-07-2018, 08:13 PM
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Are you guys using baby sign language (BSL) with him? Is it an option?
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Old 04-09-2018, 09:49 PM
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Great parents! Many blessing to the family. Go Carter!
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Old 07-03-2018, 04:16 AM
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My wife started a GoFundMe for Carter. He has almost outgrown the crib that I built before he was born, intending on having a typical child. Everything has been done to make it safe as possible for him, but he can’t use it forever. Knowing how wonderful the insurance industry is, we are anticipating his bed being denied, so we are reaching out to our friends and family. It’s not the route I want to take, but sometimes life forces you to make choices you wouldn’t otherwise. If it keeps Carter safe and my wife happy, I’m all for it. We aren’t asking for much, but after posting about Carter’s diagnosis, many of you PMed me and recommended starting a GoFundMe page. We were very reluctant because we’re not ones to ask for a hand-out. We both work full time, and overtime, to make sure we can provide the best possible life for Carter. Thanks in advance to anyone who can contribute, you’ll never know how much it means to our family. I posted my wife’s entry from the GoFundMe page and some updated Carter pictures. Thanks again everyone for the thoughts, prayers and support through all of this.

https://www.gofundme.com/carter-can-cartermancan

I have put this off for as long as I can, but as a last resort, we are in desperate need for some help with Carter's care.

If you do not know my son, he is my greatest treasure and I will do everything in my power to keep him healthy and happy. He is extremely delayed and diagnosed with a rare disorder, GRIN1. This leads to multiple impairments such as epilepsy and motor delays.

These funds will help us to purchase a special bed to keep him comfortable and most importantly, safe, at night. We are also going to use them to purchase a special bath seat to grow with him as he ages. We have done, literally, everything in our power to keep him safe and as he gets bigger, it gets a little more difficult (and more expensive, unluckily).

Any other leftover funds will be used directly for his care. I will keep everyone updated on his page, https://www.facebook.com/mycartermancan/, which I use to show our daily life with my man and his progress.

This child means everything and more to me. Any help is more than appreciated and if I can do something in return, please do not hesitate to ask. If you cannot donate monetarily, which I more than understand, please like and share this post to help us out. We love all of you and the support and love for us, thus far, is something we hold near and dear to our hearts. #cartermancan and #cartermanwill









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Old 07-03-2018, 04:20 AM
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God bless you guys.
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Old 07-03-2018, 05:41 AM
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With you and Carter in spirit and prayers. Donated, too!
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Old 07-03-2018, 06:29 AM
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Beautiful little boy! Your a wonderful dad, keep it up.
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Old 07-03-2018, 08:24 AM
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These children are not just the most precious gift but also our future.
God bless that little fella
I am in
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Old 07-03-2018, 10:42 AM
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All I can say is, there is nothing like that look of pure joy on your child's face, like the middle pic of first set. It is priceless. Carter has our prayers.
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Old 07-03-2018, 05:05 PM
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