Well like I shared in one of Paxton's first posts, his first smile in his sleep came when I played the song for him, "I Am Like a Star Shining Brightly."
Paxton has been a "star" long before tonight! We are so proud of him and humbly grateful for his presence in our fortunate lives! Tonight we were able to share his struggles and triumphs with many people. Already our reporter from KSL has put us in contact with a mother who emailed her immediately, with a daughter who has a deletion somewhere on chromosome 7 as well! It may not be the same gene breaks, but I'm so curious and excited to learn from her! Already a great result from tonight's story. So thank you for letting us share, and for being so interested to see this sweet babe on his TV debut. :)
Here are the links to the story:
The preview clip.
The 4 minute story.
We think Paxton knew what was coming tonight, as he made so many improvements today... It was as if he wanted to tell us all he is happy. He knows he's teaching us all by hanging in here.
Again, he has been the benefactor of many prayers and blessings, the tender care of incredible nurses and doctors, and all of our combined faith, love, and concern. Before we left tonight we experienced this beautiful moment with our calm and happy, awake son. How wonderful to see him improving so much from last weekend's complications. Thank you all for your continued support for our angel boy, Paxton! We love you buddy. Sleep sweet!
Sincere thanks to Jennifer Stagg, who reported Paxton's unique and truly "one of a kind" story so tenderly tonight. Thank you Jennifer; it was beautiful and will be a treasure for all of us and I hope, especially Paxton, someday. You shared it so accurately and kindly, which we appreciate so much. Thank you for showing him as the inspiration he is, bringing "peace" to all of us as we continually wish so much for him. Thank you very much!
26 comments:
What a beautiful angel he is! You are all such a cute family! I know my mother in law, Mary Ann Hansen, feels so blessed to know you all and be able to help Paxton!
P.S. thank you so much for the tickets it meant so much for us to be able to go!
I saw your news story tonight and wanted to tell you I was very touched and I am praying for Paxton. We had the NICU experience for a few weeks and I know how hard it was for us, and it was absolutely nothing compared to what you are experiencing. Hang in there and enjoy those cute little smiles he gives you. You have a great little family.
I am praying for little Paaxton. He is such a cute little boy. I know that the NICU can be a scarey place but just hang in there and enjoy your little miracle.
We just had our first son premature and as a result he is still in the hospital with minor complications. I know how hard it is as a parent to juggle all of this and not have your child with you and wonder if he'll be ok. Your story and faith is amazing! My wife and I will be praying for you and your family.
Read your story this morning. I will share this story with my family tonight. THe Kauffman family will be thinking and praying for you.
very touching story by ksl. i posted the link on FB so hopefully there will be even more people praying for him. he truly is a miracle. such a beautiful miracle baby!
Congratulations on your beautiful baby boy! I just read your story on KSL, and wanted you to know that I will be keeping your sweet Paxton in my prayers.
My youngest daughter also has a rare chromosome disorder, a 6q deletion. I don't know if anyone has directed you to CDO (Chromosome Disorder Outreach) at www.chromodisorder.org, but that can be an extremely helpful resource.
Good luck and know that you aren't alone! I will be thinking of you and keeping you all in my prayers.
Hugs,
Wendy
What a beautiful family you have, I have been inspired by your story and know your family is in our prayers. (Ami Speirs Arbon).
What a great story. My son also has a rare chromosomal disorder, although not as rare as yours. He has trisomy 18 and I recognize so many of your comments and feelings. If you're around (and up to it) I'd love to visit. We're in room 4310 at PCMC now. Not sure how long a stay it will be. Hopefully not too much longer.
Rebekah
Just read your touching story - your son is beautiful. You don't know us at all, but we'd like to add our prayers for Paxton and your family.
What a beautiful picture of Paxton! I'm glad you had a good night last night with Paxton. The news story was wonderful! I think they did a beautiful job capturing the beauty of Paxton and your entire family!
I'm so glad he was doing better last night! I love that last picture you posted, and that sweet face! You can sure tell he loves his family!
I saw your story on KSL and it brought me to tears!! I have a son who was a preemie (31 weeks) and was diagnosed at 4 months with 2 holes in his heart as well as pulmonary hypertension. While his condition wasn't NEARLY as critical as Paxton's, I know what it's like to worry and wonder what the future would hold.
Please feel free to email me if you have any questions, or just want to talk to someone who can sort of relate to your situation!
Nikki
www.brokenheartsmended.blogspot.com
Want to give your family and little Paxton the best of wishes. My wife and I know ohh to well the daily ups and downs you can go through and just how precious each moment with him is. We lost our little Ireland Rose last summer after a battle but would do it all over to spend those loving days with her.. Best Wishes to you and yours
Shannon, you are so beautiful! You and Dave are amazing parents. Your boys are so lucky to have you two. Paxton is such an inspiration and he is truly blessed with the gift of love. I have never met him but when I read your posts and see his sweet pictures my heart is softened and I am reminded why we are here on this earth. I Love you guys so much and I hope to get to see you the next time I am in Utah.
Just saw Primary share your story on Facebook! Me and my little fellow 7q deletion gal are cheering your family on and wishing Paxton a speedy exit!
Thanks for being such a great example of courage and strength. Go Paxton go!
Obviously you don't know me. I had the opportunity to speak with your dad many years ago when I lived in Provo. He was the speaker that day in church. He had an original copy of the Book of Mormon with him. I talked to him afterwards and I looked at the Book of Mormon and I remember that it was neat talking to and meeting him. The day you blessed your son, I was leaving PCMC and ran into your dad. I told him I had wanted to contact him for years. I served my mission in Rochester, NY. I gave tours at the sites, one of them being the Book of Mormon puclication site. I wanted to contact your dad and tell him that. So, I stopped and talked to him that night as he was on his way up to be a part of the blessing. Your sweet mom showed me the picture of Paxton on her cell phone. My son was at PCMC for a week and a half, then medically transferred to Philadelphia where he was for 4 1/2 weeks. He is doing fine. Your parents got my son's name and said they would pray for him, and we were praying for Paxton Norton. That was a couple months ago and there has not been one day that has gone by that I have not included him in my prayers. We came home to our 3 other children and with busy life, I have not been able to call your dad to find out what ever happened with Paxton. My husband called me from work today and told me that Paxton had his debut on KSL last night. For the past hour I have been reading your blog and bawling. You are such a strong woman. I have been inspired by you just reading your beautiful story. My experience was hard, but nothing compared to your story. You have a beautiful baby and family. I thank you for your amazing words and testimony. I continue to keep you and your precious son and family in my prayers.
As I heard you singing, I thought of Sandy in the Senior Class Play at SHS about...11 years ago. You've come a long way since then, Shan. ;)
Love the way you and Dave support each other. It was sweet to see on camera...
Goooo Paxton!!!!!!
Aunt Traci
I just watched the story. absolutely beautiful! Love you Shan!!
Thank you for sharing your story. I have been very touched by your blog and your darling little Paxton. Your entire family is an example to me and I want to be a better person after reading about the great faith you have.
I grew up with Dave and knew he was an amazing person and now know he has an equally amazing wife.
your story touched my soul in sooo many ways. my son was born with a rare genetic disorder and even though its no where near the same it was still hard to hear. they thought that my son had trisomy 18 at first as well. i would love to chat with you some time email me at janny1214832000@yahoo.com
he is beautiful and such a blessing!
Love Paxton's smile! His coloring looks great... glad he's doing better :)
Shannon,
I am the mother that contacted Jennifer about your Angel, Paxton. Please feel free to contact me anytime. She is now 24 and like Paxton, she has two brothers who would go to the ends of the earth for their sister. I actually didn't see your story on TV. I happened to be reading the news on KSL.com and saw the preview print of the baby with a rare disorder (I think that is how it had been printed). The story was to air that night. My mind immediately thought "what are the chances of it being the same as Sammy". The preview didn't give any details. We don't have TV in our house (we own TV's but have chosen to have cable and etc...removed for now) so watching it on the network wasn't a choice. I decided to check it out the following day on their website. I woke up at 10:10pm and had an overwhelming feeling to turn the computer back on and find the story. There it was, "7q deletion with 15 documented cases". I was floored and emailed Jennifer. I was told those exact words with my daughters diagnosis. One that didn't come until after 2 months of age. They knew something wasn't right but couldn't tell exactly what. The details are a very long story and I will save those for another time. I just want you to know that there is hope. You just have to believe that they want to be here and you can take whatever this diagnosis brings. There will be days of wondering "why" or "how much more can he take" and he will be the one to show you just how tough he is and help you to find why. Good luck to your family and contact me at anytime. sljacob@allwest.net
Stacie
What an amazing story! Your're little guy is an example to all of us. Keep smiling. XOXO
Amazing you guys! So sorry to see your sweet boy so sick but soo happy to see him feeling better what a beautiful picture of him smiling!! What a CHAMP!! We LOVE you guys soo much thinking and praying for all of you xoxoxo! Please call if you need anything!!! LOVED the news broadcast!
Shan, you have such a beautiful voice! Loved it!
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