tag:blogger.com,1999:blog-4997156159638877174.post9218957470496812553..comments2023-09-26T00:25:51.171-07:00Comments on Little Wonders: "The question is this: Is man an ape or an angel? I am on the side of the angels." ~Benjamin DisraeliHeatherhttp://www.blogger.com/profile/04209967185741239050noreply@blogger.comBlogger24125tag:blogger.com,1999:blog-4997156159638877174.post-1663862477516060662010-12-17T20:18:50.800-08:002010-12-17T20:18:50.800-08:00I know that UCLA is THE place to be, and I feel co...I know that UCLA is THE place to be, and I feel comforted every time I think about the testing they've done for Emily and the answers we've gotten.<br /><br />Then I remember that our "2 month follow-up" couldn't be scheduled until FOUR months later, which is still TWO months away from now .. and Emily is having more and more seizures .... and I want to scream.ANewKindOfPerfecthttps://www.blogger.com/profile/11978293330074662766noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-21921368531952878032010-12-06T10:44:02.875-08:002010-12-06T10:44:02.875-08:00Has he started receiving treatment that you know o...Has he started receiving treatment that you know of and if so what was it?blogzillyhttps://www.blogger.com/profile/08268388544631653375noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-1162636281315270212010-12-05T21:52:48.929-08:002010-12-05T21:52:48.929-08:00Bravo to you. I have to confess that that surprise...Bravo to you. I have to confess that that surprises me -- not that you'd be so assertive but that THEY would respond so quickly. I am glad for that family and hope that those infantile spasms disappear.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-90158061594214194822010-12-05T20:14:59.926-08:002010-12-05T20:14:59.926-08:00You were in exactly the right place to help this l...You were in exactly the right place to help this little boy! And it is so nice to hear that there are very important doctors that really do care!Melissahttps://www.blogger.com/profile/06474584473012742915noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-7309232816547637132010-12-05T12:25:29.667-08:002010-12-05T12:25:29.667-08:00oops - forgot to mention- Great, great photo of li...oops - forgot to mention- Great, great photo of little Miss "Z"<br />\<br />Aunt BluebelleAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-17956439845434443972010-12-05T12:24:00.347-08:002010-12-05T12:24:00.347-08:00Great post Heather... Yes we do become jaded &...Great post Heather... Yes we do become jaded & bitter but this lets us know there is hope,love & caring out there in the medical world and beyond.<br /><br />BluebelleAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-77575527518300275692010-12-05T10:02:25.058-08:002010-12-05T10:02:25.058-08:00I am not surprised at how quickly the story of thi...I am not surprised at how quickly the story of this precious little boy spread through the mom community but the fact that the doctor actually responded just as quickly is unbelievable. You obviously knew how special these doctors were or you wouldn't have even tried to contact them on the weekend. The babies chances at a normal life are so much better now and YOU made that happen. Once again proving that Zoey was sent here to earth for a reason and that you were chosen, as her mother, to be her voice. You were the perfect person to be chosen by God for this purpose.<br />kathleenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-75176470537230050842010-12-04T19:26:21.684-08:002010-12-04T19:26:21.684-08:00Oh Heather I like the way you work!!! I pray that...Oh Heather I like the way you work!!! I pray that this little guy will have a miraculous outcome.Bea Braunhttps://www.blogger.com/profile/02731571117429173461noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-7350932758876425362010-12-04T17:23:03.566-08:002010-12-04T17:23:03.566-08:00Your the greatest!!Your the greatest!!Googsmomhttps://www.blogger.com/profile/04489871501422481442noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-537973599475767532010-12-04T15:34:53.016-08:002010-12-04T15:34:53.016-08:00Thank you for the message. I am so not good at thi...Thank you for the message. I am so not good at this blogging thing. I sent a long message and it did not go through, but I would love to talk with you. My e-mail is mckinney_98@hotmail.comKileyhttps://www.blogger.com/profile/01554325358151355034noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-45564948419760414902010-12-04T15:12:56.620-08:002010-12-04T15:12:56.620-08:00My e-mail is mckinney_98@hotmail.com
Topamax was ...My e-mail is mckinney_98@hotmail.com<br /><br />Topamax was the first drug we tried. We only tried it for about 1-2 weeks because it sedated Hunter. Knowing more now (2.5 years later) our first neuro. was making increases too fast for Hunter. He has to increase slowly or he become too tired. Last month we started Zonagran (a sister med to topamax). We are suppose to make another increase monday, but we have not had any imporovement. It is weird, the myoclonic seizures are better, but now he is having tonic/clonic seizures and staring seizures. Our neuro. is great, but I think he is running out of options. We have a Vagus Nerve Stimulator and corpus collosum surgery as our options, neither I am excited about. I would love to talk sometime and if Dr. Shields could help maybe a trip to UCLA is the ticket. We did go to NYC last year in hopes of some help, but again so success. My little angel deserves some so much better, I wish as his mom I could give hime that. Thank you for your kinds words and thoughts.Kileyhttps://www.blogger.com/profile/01554325358151355034noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-76747034156620873012010-12-04T15:00:51.830-08:002010-12-04T15:00:51.830-08:00Kara filled me in, and I am just sick for this fam...Kara filled me in, and I am just sick for this family. I have no idea why things like this happen to kids, and why parents must suffer through their children. I hope and pray for the very best outcome possible - they are lucky to have such a "connected" friend! <br /><br />MoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-27805245552578902222010-12-04T13:41:32.407-08:002010-12-04T13:41:32.407-08:00I found this kind of responsiveness with the WORLD...I found this kind of responsiveness with the WORLDS leading osteogenesis imperfecta specialists. They are so nice, down to earth, and accessible to us as families of kids with OI. It's wonderful isn't it? And as far as you getting this baby hooked up...this is why I feel at my age that I'm working with special kids in the 0 to 3 population when I should be retired...to get them services quickly! We are kinds of professional navigators for those parents who are unfamiliar with the terrain.SECRET PEPPER PERSON:https://www.blogger.com/profile/06434583043459305729noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-906149364827270762010-12-04T12:33:23.536-08:002010-12-04T12:33:23.536-08:00Hunter might be able to benefit from this Dr. We ...Hunter might be able to benefit from this Dr. We have battled Infantile Spasms for 2.5 years, since June 2008. We have tried prayer, medication, ketogenic diet x2, acth, everything our md has to offer except surgery. If you would be interested in talking to him/her about us maybe we could make a trip from st. louis mo. to ucla.Kileyhttps://www.blogger.com/profile/01554325358151355034noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-47613777371630550272010-12-04T12:30:45.611-08:002010-12-04T12:30:45.611-08:00Would you happen to have that dr. e-mail still? W...Would you happen to have that dr. e-mail still? We have been fighting infantile spasms for 2.5 years with Hunter and have not had a seizure free day yet. We have lost development and our son to this disease. We have tried everything but surgery. Maybe Dr. Shields would have a suggestions for us. We do live far, St. Louis MO. BUt if he/she believes he could help us we would love to go to UCLA.Kileyhttps://www.blogger.com/profile/01554325358151355034noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-39767939262559564982010-12-04T11:49:46.382-08:002010-12-04T11:49:46.382-08:00I love how God is using you, and your past. That i...I love how God is using you, and your past. That is how we met.I remember those IS days. Brings tears to my eyes, wondering how our sweet litle Victoria is doing. Sad that the guardians wouldnt listen to me during those long hard days and months. But its what led to us looking for a special little one of our very own. We too are choosing to let our past change our future. Gods plan is so big and beautiful. Heather, you rock!Annahttps://www.blogger.com/profile/05452607521750848540noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-2960090425142396602010-12-04T11:30:11.356-08:002010-12-04T11:30:11.356-08:00I love how God spoke to you and you answered the c...I love how God spoke to you and you answered the call. You are awesome!Rochellehttps://www.blogger.com/profile/11866781944242761406noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-37756352633998822612010-12-04T09:32:15.932-08:002010-12-04T09:32:15.932-08:00Ok, I need to get Jax to UCLA! Seeing the testing ...Ok, I need to get Jax to UCLA! Seeing the testing they were doing for Emily, stuff thats never been done with Jax, and now this sweet doctor. That is where Jax needs to be!<br />By the way, I called that kid Thomas, when it was Mathew. Yeah, I'm horrible with names!Laceyhttps://www.blogger.com/profile/03321275110857561824noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-58846141168061928592010-12-04T08:13:57.360-08:002010-12-04T08:13:57.360-08:00You are an amazing woman!You are an amazing woman!Sweet Pea's Mommyhttps://www.blogger.com/profile/04865365312620255005noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-2776585607650288072010-12-04T06:42:39.964-08:002010-12-04T06:42:39.964-08:00Great work Heather and I am not surprised, you'...Great work Heather and I am not surprised, you've just figured out how the system works....Hope your friend's child does well with great care at UCLA!colleennoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-39187628488412787252010-12-04T06:34:07.402-08:002010-12-04T06:34:07.402-08:00What a wonderful doctor! And, you are a wonderful...What a wonderful doctor! And, you are a wonderful friend! Hugs!!!The VW'shttps://www.blogger.com/profile/05116325494368190699noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-7340794984714077562010-12-04T05:40:05.788-08:002010-12-04T05:40:05.788-08:00God put you in the right place to help that family...God put you in the right place to help that family and that baby! So glad to have you as a friend, even if we have never met IRL! :) I think every neuro in the U.S. is at that conference, along with some of my good friends who are all Peds Neuro NP's & nurses. They have promised to fill me in if there is anything new and exciting. I'll pass it on.<br /><br />Hugs to all! Have a wonderful weekend!<br /><br />Steph and ChristopherStephaniehttps://www.blogger.com/profile/08323989778846355329noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-79654535531723261042010-12-04T05:06:11.410-08:002010-12-04T05:06:11.410-08:00Heather,
Infantile spasms is indeed one of the m...Heather,<br /> <br />Infantile spasms is indeed one of the most horrific diagnosis a family can receive. It steals your child, while leaving their body behind. It has to be a parent's worst nightmare to wonder if they will ever again see their baby's beautiful smile or hear them laugh (not to mention the horrific 180 it does on any child's development). I understand what you are saying about it being in some ways worse than leukemia, because even through all her treatments we saw pictures of Zoey smiling and fighting. I am thankful that Zoey was not left in that dark world of infantile spasms. <br /><br />Also, thank you, that you reminded us that there are doctors that still care. Like any profession, I'm sure that there are those who are not in it for the right reasons, but in my experience I have met more caring and concerned doctors than the other way around. I recently had to call an on call pediatrician at a very inconvenient hour, and I started off by apologizing for bothering him. His response was never apologize for being a mother, I'm here to help you no matter what. Thank you for sharing. Have a wonderful weekend.another mothernoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-567432920322973682010-12-04T04:50:46.266-08:002010-12-04T04:50:46.266-08:00Wow!! It feels so good to read that sometimes the ...Wow!! It feels so good to read that sometimes the world isn't so bad after all and that there are people who genuinely care. The thing about doctors is you never know when they truely care from the heart and if they actually do. Reading this was refreshing and reassuring. So happy that this little boy will be getting the help he needs and no time is going to be wasted.Tinahttps://www.blogger.com/profile/15552691097146215450noreply@blogger.com