tag:blogger.com,1999:blog-293150125648303777.post4153691109515771704..comments2023-08-28T07:35:22.997-05:00Comments on Eli's Journey: Eli's UniquenessesMelissa Ramirezhttp://www.blogger.com/profile/10378839919180816409noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-293150125648303777.post-75912255811211770322008-02-11T09:55:00.000-06:002008-02-11T09:55:00.000-06:00My son was also born with craniosysnostosis (in th...My son was also born with craniosysnostosis (in the sagittal bone) and a cleft of the soft palate. He had pierre robin and had a Frankenstein forehead which cleared up after his surgery. His right ear had to be reconstructed due to misplaced ear bones, but he didn't have any of the bone issues that Eli has in his arms and legs. <BR/><BR/>The point is, I know a nano-smidgen of what you feel and how miraculous every milestone is. I pray faithfully for this little child I've never met. When my son stopped vomiting (we were using pre-digested formula), it was like a vacation, but to this day, I cannot smell Nutramigen without feeling a tiny ping in my heart at the memory of those difficult days.<BR/><BR/>My son is eighteen now and his difficult days are far behind him. His every success is a miracle and few people understand why I get so emotional seeing my sun RUN in a cross country race, much less wear a medal around his neck. I never thought it possible when he had a helmet on his head, his skull was oatmeal and he was in a walker because the doctors told us a fall could klll him. But with God, all things are possible.<BR/><BR/>My prayer is for you and Eli to one day have all these challenges behind you and I know you already feel that overwhelming joy at watching him experience miracles. But, if these challenges continue, know that God is crafting each one of you into something positive and beautiful out every difficult moment.<BR/><BR/>People who don't even know you, love you and pray faithfully for you because Jesus loves you.<BR/><BR/>Mary Nichols<BR/>Forney, TX<BR/><BR/>p.s. I put something in the mail for Eli. I hope you get it soon.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-293150125648303777.post-67974068330914023272008-02-10T18:24:00.000-06:002008-02-10T18:24:00.000-06:00Congratulations on the new teeth! May Eli's smile...Congratulations on the new teeth! May Eli's smile be even more precious. Thanks for the blog. You've done an excellent job on it. I'm thrilled to hear about the weight gain and that he's not throwing up anymore. Maybe next time I'm there I can "bounce" him. :-) Love to you and sweet Sophia. Hugs and kisses to all.<BR/>Love, Great Aunt LesliAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-293150125648303777.post-18052318320239183922008-02-08T15:12:00.000-06:002008-02-08T15:12:00.000-06:00Thanks so much for starting this website! I am ex...Thanks so much for starting this website! I am excited to be able to follow the progress and growth you're reporting in your little man. I am sharing the site with the Little Light House staff so we can all pray very specifically for little Eli!<BR/><BR/>~KateAnonymousnoreply@blogger.com