tag:blogger.com,1999:blog-6748120729776824370.post3136527525912799246..comments2023-10-06T10:20:27.335-05:00Comments on Ruler of Hope: Landrey's Journey Part 13 (The Official Diagnosis)Kristen Earglehttp://www.blogger.com/profile/14181534313833398087noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-6748120729776824370.post-88040240571925699552020-05-31T07:05:52.745-05:002020-05-31T07:05:52.745-05:00energetic diagnosis I just got to this amazing sit...<a href="https://energiaambiente2050.it/diagnosi-energetica-a-roma/" rel="nofollow">energetic diagnosis</a> I just got to this amazing site not long ago. I was actually captured with the piece of resources you have got here. Big thumbs up for making such wonderful blog page!Charlesdayhttps://www.blogger.com/profile/14773516967845965767noreply@blogger.comtag:blogger.com,1999:blog-6748120729776824370.post-92002351724224944322020-05-30T03:29:37.487-05:002020-05-30T03:29:37.487-05:00Thanks for such a great post and the review, I am ...Thanks for such a great post and the review, I am totally impressed! Keep stuff like this coming. <a href="https://energiaambiente2050.it/diagnosi-energetica-a-roma/" rel="nofollow">energetic diagnosis</a>I am blogger 14https://www.blogger.com/profile/14171395171042255476noreply@blogger.comtag:blogger.com,1999:blog-6748120729776824370.post-74687424653136292019-06-13T06:05:44.607-05:002019-06-13T06:05:44.607-05:00Are you searching for Intellectual Property Lawyer...Are you searching for Intellectual Property Lawyer in US? <b><a href="https://www.lexprotector.com/" rel="nofollow"> Lex Protector </a></b> is a leading intellectual property firm. We provide <b><a href="https://www.lexprotector.com/services/ip-management/ip-consultation/" rel="nofollow"> IP Consultation</a></b>. We specialize in patent services, trademarks, copyright, commercial IP, IP enforcement, dispute resolution & more.<br />• <b><a href="https://www.lexprotector.com/services/ip-enforcement-and-copyright/dmca-takedown-notice/" rel="nofollow"> DMCA Takedown Notice</a></b><br />• <b><a href="https://www.lexprotector.com/services/trademark/trademark-registration/usa-tm-registration/" rel="nofollow"> Trademark Registration</a></b><br />Lex Protectorhttps://www.blogger.com/profile/10504684182290849610noreply@blogger.comtag:blogger.com,1999:blog-6748120729776824370.post-40941391180752123412019-05-30T12:36:44.409-05:002019-05-30T12:36:44.409-05:00Hi Kirsten. We would like to to get in contact wit...Hi Kirsten. We would like to to get in contact with you. Our son was diagnosed in 2017 with a mutation on the CSNK2b gene (in frame duplication). At the moment we have a facebook group of 13 parents who have a kid with a mutation on this gene. Together we share our information and help each other with questions. You are welcome to join.<br /><br />Best regards from the Netherlands,<br /><br />Tijmen and Esther<br />Tijmen en Estherhttps://www.blogger.com/profile/12343160460488645319noreply@blogger.comtag:blogger.com,1999:blog-6748120729776824370.post-27660120815580382392018-11-04T14:06:16.944-06:002018-11-04T14:06:16.944-06:00Blinds have always been one of the best choices wh...Blinds have always been one of the best choices when it comes to covering windows at homes as well as corporate working environments in a stylish manner. For more details visit <a href="windowshades.net" rel="nofollow"> windowshades.net</a>Anonymoushttps://www.blogger.com/profile/15995243381640526865noreply@blogger.comtag:blogger.com,1999:blog-6748120729776824370.post-39440953467511350722018-09-02T12:07:35.233-05:002018-09-02T12:07:35.233-05:00Your story of pain, love, hope, and joy is an incr...Your story of pain, love, hope, and joy is an incredibly touching and inspiring story. I volunteer in our church's special needs room and I see families who come together regardless of their income, background, ethnicity, or family orientation lean on each other, family, and friends for the betterment of their children. I often state that our politicians could learn much from families of special needs children because their differences are irrelevant and they work together to improve their children's lives. God bless you and your family on this journey. Your strength and resiliency may vary during extremely difficult times but no doubt your love for one another and God will always be strong. God bless you and please continue to update us on Landrey's story. Anonymoushttps://www.blogger.com/profile/15245531527567506084noreply@blogger.comtag:blogger.com,1999:blog-6748120729776824370.post-9330556478377357092018-08-28T08:57:15.802-05:002018-08-28T08:57:15.802-05:00Hi Kristen, I live in Clarksville and just read yo...Hi Kristen, I live in Clarksville and just read your family's story in the newspaper. Never having dealt with anything even close makes it hard to imagine the difficulties you go through every day. I can feel the heart wrenching pain and also the love in your blog posts. I'm an Austin Peay fan and now a Landrey fan. If there is anything I can do for you or Landrey please email me. Praying for you guys. Kathy OwenKathy Owen, Petticoat Junktionhttps://www.blogger.com/profile/02996819479475060341noreply@blogger.comtag:blogger.com,1999:blog-6748120729776824370.post-52509356080807285362018-08-27T22:25:32.693-05:002018-08-27T22:25:32.693-05:00One of the blessings of Landrey is that you are ex...One of the blessings of Landrey is that you are exposed to the absolute best version of everyone you meet with her. It's an amazing blessing and provides an incredible view of what could be on this earth. I'm proud to be a Landrey fan!Dawgnoreply@blogger.comtag:blogger.com,1999:blog-6748120729776824370.post-64223381145525261682018-08-23T19:25:19.364-05:002018-08-23T19:25:19.364-05:00Your eloquent writing of precious Laundrey's f...Your eloquent writing of precious Laundrey's fight and will to live so touched my heart. I will continue to follow her story and believe God for complete healing, as well as wisdom, knowledge, and understanding for your and your husband. God's richest blessings and love.Anonymoushttps://www.blogger.com/profile/15730085943309655142noreply@blogger.comtag:blogger.com,1999:blog-6748120729776824370.post-36196517053679662132018-08-17T06:09:18.335-05:002018-08-17T06:09:18.335-05:00Sorry it’s debbie Dobbs who is the disability advo...Sorry it’s debbie Dobbs who is the disability advocate (auto correct!)Keri sullivan ninnesshttps://www.blogger.com/profile/17511654877013549397noreply@blogger.comtag:blogger.com,1999:blog-6748120729776824370.post-447703924036788112018-08-17T06:08:25.203-05:002018-08-17T06:08:25.203-05:00Hey Kristen, my name is Keri Ninness and I saw a p...Hey Kristen, my name is Keri Ninness and I saw a post on your family on Facebook. My son also has a rare genetic disorder, mutation on csnkn2a1. He was the 6th child in the world but with increasing access to whole exome sequencing testing, there are now about 50. I will second the above, we are in Atlanta (I went to college with mary Beth Smart- amazing family!) . Look into the katie Beckett deeming waiver. It’s a federal program but state run. Your child needs 5 therapies a week unless IQ is signicialtely low and then 5 therapies aren’t always needed. Pays for 2000 a month in therapies and all md copays. It literally saved our finances. There are advocates who can help with the application process (google debbie Donna- huge disability advocate In GA but she may be able to refer in TN.) my son Thomas will be 6 on September 10 and we just got an answer a year ago but ours was similar to yours- an answer with no answer. Like you, we are people of great faith and know that God has such purpose for our babies. About also like you, the day to day is daunting and scary and wonderful and expensive and exhausting. It’s so hard to explain to other people. Anyway, your family has my prayers today. We are actually flying out to my today to meet with the head of pediatric genetic at Columbia university, dr Wendy Chung. She does a lot of work with rare diseases as this is her passion. Just another name to keep in your back pocket. Have a wonderful week. Will be cheering for your family and for the brave and strong Mama fighting for her girl! Keri Ninness. Keri.ninness@gmail.comKeri sullivan ninnesshttps://www.blogger.com/profile/17511654877013549397noreply@blogger.comtag:blogger.com,1999:blog-6748120729776824370.post-26842709612621122582018-08-14T18:18:49.981-05:002018-08-14T18:18:49.981-05:00My name is Julia Nalle and we have adopted a child...My name is Julia Nalle and we have adopted a child who was just diagnosed with CSNKCB too... We got the diagnosis today. My e-mail is covenantb@yahoo.com We need to connect. Our daughter is 7 and has severe epilepsy - Doose Syndrome - major speech delay. My blog is covenantbuilders.blogspot.com - or Micah Six Eight I'm trying to read everything I can since finding out today and stumbled upon your post. I saw Cassidy Snider's comment too and think it is really strange that three families all hear the same extremely rare gene mutation within days of each other.<br />Juliahttps://www.blogger.com/profile/04814524050417570766noreply@blogger.comtag:blogger.com,1999:blog-6748120729776824370.post-21586788966297632982018-08-14T10:45:23.148-05:002018-08-14T10:45:23.148-05:00This was an amazing read! I have a 2 1/2 year old ...This was an amazing read! I have a 2 1/2 year old daughter that has just been diagnosed with the same csnk2b genetic disorder. It was frustrating up to this point going to dr after dr, having test after test done, many nights in the hospitals, & so many unanswered questions. Then we finally found out that she has this rare condition & it’s like we’re back to square one. I’m thankful that we have an explanation but not so much that I will never know what her future may hold & as a mother that’s a very scary thought. I will definitely be praying for your girl & your family as I know what you are going through. I wish her the best of luck & will continue to follow her story! Anonymoushttps://www.blogger.com/profile/03990851990242612791noreply@blogger.comtag:blogger.com,1999:blog-6748120729776824370.post-6810541374673342892018-08-11T10:13:25.801-05:002018-08-11T10:13:25.801-05:00Kristen, I saw your story when Coach Niedermeyer ...Kristen, I saw your story when Coach Niedermeyer posted it on twitter. My wife and I have a 4 year old who faces similar challenges as Landrey having a genetic syndrome and having been through three open heart surgeries. <br /><br />If you haven’t already, please look into Medicaid waivers programs in your state. In Texas, our daughter qualified and based on the seriousness of her issues she has both regular insurance and Medicaid which means her extra therapy and formula, etc. are covered. Medicaid also covers her deductible with our insurance company. Anonymousnoreply@blogger.com