tag:blogger.com,1999:blog-8149631277259218166.post8291681378418901180..comments2023-05-29T05:37:49.224-07:00Comments on Notes of Naya: Baby StepsJamiehttp://www.blogger.com/profile/12985679868789331257noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-8149631277259218166.post-65366494284127900372011-09-09T11:47:39.136-07:002011-09-09T11:47:39.136-07:00You don't know me. My name is Denise and my c...You don't know me. My name is Denise and my cousin Sara is one of your friends. Our church has been praying for Naya since the Sunday before her great improvement. My heart breaks at the tough decisions you and your husband have had to make and it also breaks at the stuggle and battle that Naya is going through. <br /><br />I am a mom of a special needs child who was born with a chromosome deletion (we didn't find that out until he was 7 years old). They did a CAT scan when he was 3 months old to find that he had more fluid and less brain tissue and they felt it was atrophy (the brain will continue to shrink). We were to expect the worse. If he survived he would never walk or talk or be able to feed himself. After much prayer we took him in at 15 months and his brain had filled the empty spaces and they didn't understand why. I know why...God. It has been hard work, but our son is a freshman in high school. He is in Special Day classes, but he walks, talks, feeds himself and is a great guitar player. <br /><br />My youngest son was placed in NICU within hours after being born with Pneumonia. The hospital where he was born could not keep his O2 sats above 60 and had to transport him to a different hospital and he wasn't even 24 hours old. Praise God he did a complete turn around and was home in 7 days. He is 7 now and has grown of the asthma that this had caused.<br /><br />I only tell you this for two reasons one for encouragement because we do not know what God has for Naya and the other is to let you know that I have been near your shoes. I do not know all that you are going through. Some of the decisions you face I have not had to face. But some of the fears you have I have had and I have been amazed at all that God gives parents who have children with special needs or who are seriously ill.<br /><br />I commend you and your husband for sacrificing yourselves for the greatest benefit to your daughter. That is such a selfless act to want what is best for her even if it means losing her. That is the hardest decision a parent ever has to make and one most of us never want to go through. I will continue to pray not only for Naya and what God feels is best for her, but for you both to have comfort, strength and the peace from God that surpasses all understanding.<br /><br />I know God answers prayers. I also know they are not always the answers we want. He knows what is best for her (whether to be here with you or in heaven). I hope I didn't step out of line with my words or on your feelings. I just wanted to let you know your not alone, that we are praying for you along with everyone else you know and if you need an ear to just vent, scream or cry you can e-mail me and I will be glad to send you my phone number so that you can call anytime day or night for that extra support or that shoulder. 1dshaight@gmail.com<br /><br />Thank you for sharing your journey and for the opportunity to share with you.<br /><br />God Bless,<br />DeniseDenise Haighthttps://www.blogger.com/profile/09499580544239999313noreply@blogger.comtag:blogger.com,1999:blog-8149631277259218166.post-47218012104948134752011-09-01T19:26:51.899-07:002011-09-01T19:26:51.899-07:00Hi, Jamie -- this is Johanna Rubba, you're old...Hi, Jamie -- this is Johanna Rubba, you're old teacher from Cal Poly -- I saw the piece about Naya in today's New Times and looked up the various links they gave. I'm so sorry you have to go through this torture! I can't imagine having a new, tiny baby who is so beautiful and then has to go through this fight for her life! I'm glad you have your family and friends to support you and your husband. I read all of your blog entries and it was such a relief to read that the edema went down so much! <br /><br />You SHOULDN'T be blaming yourself for your daughter's troubles. You didn't do anything wrong. Sepsis is not all that uncommon in newborns, and there's no way you could have avoided it. The docs you saw should have panicked a little sooner, but lymphangiectasia is so rare.<br /><br />Again, it's great to hear she's lost a lot of the swelling and that she's putting out a lot pee. It's also wonderful how she responds to music -- keep that going!<br /><br />I sure hope they can free her up soon from whatever lines and tubes she's hooked up to so you can cuddle her and really let her feel the love!<br /><br />You can bet I'll be thinking about Naya and you and Dan. 9/18 is the day before classes start, but I'll try to make the picnic. If I can't, I'll send a donation.<br /><br />You go, Naya!!Johanna Rubbanoreply@blogger.comtag:blogger.com,1999:blog-8149631277259218166.post-69882566868277374782011-09-01T09:52:26.027-07:002011-09-01T09:52:26.027-07:00Gotta love wierd hollywood hipsters... or as my da...Gotta love wierd hollywood hipsters... or as my dad refers to them "hollyweird". Love you guys. So happy to hear of Ms. Nayas improvements. Oh, and thats nice that Dan got you another job to work on! haha. Youre a busy mama!Shawna Lauringsonhttps://www.blogger.com/profile/10293424115406536856noreply@blogger.comtag:blogger.com,1999:blog-8149631277259218166.post-30365845521981959742011-08-31T22:33:16.244-07:002011-08-31T22:33:16.244-07:00SO happy to read this. Yes, more days like this p...SO happy to read this. Yes, more days like this please (minus the crazy sidewalk guy). :-)Myahttps://www.blogger.com/profile/10162087502835812438noreply@blogger.comtag:blogger.com,1999:blog-8149631277259218166.post-58080099347665270312011-08-31T21:33:03.074-07:002011-08-31T21:33:03.074-07:00Ty and I read this together tonight. and Ty just w...Ty and I read this together tonight. and Ty just wants to say, "Watch fish stick sandwich burrito and wish Naya a good week!" We love you.Tonihttps://www.blogger.com/profile/06807765239605993359noreply@blogger.com