tag:blogger.com,1999:blog-4997156159638877174.post5750245251324082574..comments2023-09-26T00:25:51.171-07:00Comments on Little Wonders: To wean or not to wean, that is the question?Heatherhttp://www.blogger.com/profile/04209967185741239050noreply@blogger.comBlogger39125tag:blogger.com,1999:blog-4997156159638877174.post-69631673503216664372011-12-30T08:43:36.636-08:002011-12-30T08:43:36.636-08:00Gorgeous girl! Thought about you all and wanted y...Gorgeous girl! Thought about you all and wanted you to know. xo<br />jessica<br />tuesday's momAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-41411849784047225202011-12-29T18:01:24.965-08:002011-12-29T18:01:24.965-08:00Love your girl, it will be okay, she deserves the ...Love your girl, it will be okay, she deserves the world and then some....Angihttps://www.blogger.com/profile/16534707158108334999noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-1084378788724572062011-12-28T13:28:13.783-08:002011-12-28T13:28:13.783-08:00Definitely praying for Miss Zoey. We are just star...Definitely praying for Miss Zoey. We are just starting down this road with Kellsey and it's freaking me out. EEGs are a whole new world for me! Ugh! Praying that you see the huge speech explosion in Zoey that you've been waiting for!!Mommy to those Special Kshttps://www.blogger.com/profile/07321242319840791482noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-50735574132222334722011-12-28T06:04:03.997-08:002011-12-28T06:04:03.997-08:00To Cheri: What beautiful words "Wonder&quo...To Cheri: What beautiful words "Wonder" Thank you for sharing with everyone in Zoey's Blog family<br /><br />Loraine (Bluebelle)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-48509489677345042692011-12-27T17:13:14.384-08:002011-12-27T17:13:14.384-08:00The Baby was just weaned off of Phenobarbital afte...The Baby was just weaned off of Phenobarbital after a very loooooong weaning process. The first thing I noticed half way through is (and she is 4 years old) that she began to TALK. She was officially weaned off two weeks ago and has been seizure free. She will probably have seizures in the future due to her extensive neurological damage but there are more appropriate drugs for her if that day occurs. The Teenager has been weaning off of her Zonegran and will be off completely on the 31st. It's similar to Topamax but not as appetite reducing. The neurologist told me half the nurses at the hospital are on Topamax for "headache" i.e., weight loss...SECRET PEPPER PERSON:https://www.blogger.com/profile/06434583043459305729noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-1591466209502185952011-12-27T09:11:58.964-08:002011-12-27T09:11:58.964-08:00Zoey was blessed with the most incredible, strong,...Zoey was blessed with the most incredible, strong, loving, and brave mom. It's the truth.... though I am sure at times you do not feel strong or brave... but we all see it out here. Though I am sure everything in you is wanting to "Keep it safe" with the Topamax I can also sense that you are sensing that Zoey's ready to try and see...<br /><br />I love Zoey, have always loved Zoey since the first day I saw her adorable little face on your blog. On bended knee I am praying that she shows the world that this too she will concur, and I am praying for developmental leaps that again "Make the doctors wonder" <br /><br />"Wonder"<br /><br />Doctors have come from distant cities<br />Just to see me<br />Stand over my bed<br />Disbelieving what they're seeing <br /><br />They say I must be one of the wonders<br />Of god's own creation<br />And as far as they can see they can offer<br />No explanation <br /><br />Newspapers ask intimate questions<br />Want confessions<br />They reach into my head<br />To steal the glory of my story <br /><br />They say I must be one of the wonders<br />Of god's own creation<br />And as far as they can see they can offer<br />No explanation <br /><br />O, I believe<br />Fate smiled and destiny<br />Laughed as she came to my cradle<br />Know this child will be able<br />Laughed as my body she lifted<br />Know this child will be gifted<br />With love, with patience and with faith<br />She'll make her way <br /><br />People see me<br />I'm a challenge to your balance<br />I'm over your heads<br />How I confound you and astound you<br />To know I must be one of the wonders<br />Of god's own creation<br />And as far as you can see you can offer me<br />No explanation <br /><br />O, I believe<br />Fate smiled and destiny<br />Laughed as she came to my cradle<br />Know this child will be able<br />Laughed as she came to my mother<br />Know this child will not suffer<br />Laughed as my body she lifted<br />Know this child will be gifted<br />With love, with patience and with faith<br />She'll make her way<br /><br />~We love you Miss Z!Cherihttps://www.blogger.com/profile/08644571627468626304noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-88560763619462349502011-12-26T05:59:01.876-08:002011-12-26T05:59:01.876-08:00Wishing you and your family a Happy, Healthy New Y...Wishing you and your family a Happy, Healthy New Year. I know you have had tough decisions to make but watching Zoey, through your blog, indicates you are are on the right path. Loved the Hula Hoop venture, whatta a gal. You are in my prayers and I'm sure God is giving you and Mark the strength to weather this journey. Bluebelle keeps me up on your postings. May 2012 be a wonderful year for you and your family. Little Zoey, you keep up the great work. You certainly are a strong warrior.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-26556579365989325942011-12-23T17:16:37.805-08:002011-12-23T17:16:37.805-08:00It's definitely a leap of faith, but you'v...It's definitely a leap of faith, but you've stood on that ledge before.<br />And Zoey is surrounded by her own army of prayer warriors who continue to hold her (and you) up.You'll never know unless you try.<br />Can't wait to see all of you!<br />Peace....just jeanhttps://www.blogger.com/profile/12189362646676599482noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-30294440527876144292011-12-23T15:47:07.515-08:002011-12-23T15:47:07.515-08:00She is such a sweetie. I remember the day I foun...She is such a sweetie. I remember the day I found your blog and fell in love with her. I've watched has she's progressed into the little beauty she is today. Go with your instincts. Can't wait to see what Zoey does in 2012. A very Merry Christmas to you and your precious family. Hugs and loveScrappy quilterhttps://www.blogger.com/profile/08643346408388508283noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-82784009762703033372011-12-22T21:27:22.987-08:002011-12-22T21:27:22.987-08:00I'm here for support only as I have absolutely...I'm here for support only as I have absolutely no experience with seizures. Looking at that precious girl of yours sure gives hope though. The hula hoop story is testimony enough that she deserves everyones attention.<br /><br />Do you follow Cayman's blog? If not here is a post by her mom that might be worth reading.<br /><br />http://livelifeinwonder.blogspot.com/2011/12/big-bad-seizure.htmlJoycehttps://www.blogger.com/profile/08466914387696533499noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-36314135314243511312011-12-22T14:20:04.592-08:002011-12-22T14:20:04.592-08:00oh Heather. My heart aches for even the possibili...oh Heather. My heart aches for even the possibility. I will pray that she can be free from the drug and free from the seizures. So hoping for a bright year for this sweet girlShelly Turpinhttps://www.blogger.com/profile/04950719033017424725noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-59747275029825857072011-12-22T08:19:02.858-08:002011-12-22T08:19:02.858-08:00I love the new Zoey pictures. She brings a huge s...I love the new Zoey pictures. She brings a huge smile to my face every time I see her.<br /><br />While I can't even begin to imagine how hard a decision this is, it seems like you are more ok with weaning than you were six months ago.<br /><br />You and Zoey, as always, are in my prayers.Melissahttps://www.blogger.com/profile/06474584473012742915noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-31033700619784676182011-12-21T21:59:03.731-08:002011-12-21T21:59:03.731-08:00Thinking of strong sweet Zoey...What ever decision...Thinking of strong sweet Zoey...What ever decisions you make are made with love and hope for your sweet girl! Love the hoolahoop pics...! She SO knows what she wants to do!Kaden Epsteinhttps://www.blogger.com/profile/01825509371289403882noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-32649935684225142362011-12-21T21:46:07.674-08:002011-12-21T21:46:07.674-08:00We have been praying for Zoey every day for over 5...We have been praying for Zoey every day for over 5 years, and now we will pray even harder. What a hard decision Heather, but Zoey has surprised you every step of the way. Trust in your doctors, trust in your amazing daughter, and trust in your God!Bea Braunhttps://www.blogger.com/profile/02731571117429173461noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-11219375769219322002011-12-21T19:55:43.485-08:002011-12-21T19:55:43.485-08:00Hi Heather,
Love the new pictures of Zoey!!! Just ...Hi Heather,<br />Love the new pictures of Zoey!!! Just can't get enough of that sweet face!Lots of good comments, information, and advice already posted. Lots to consider. Just had one thought to add to the list - how about waiting to actually make the decision until Jan. 2nd, and not worrying about whether it's the right choice until then. Maybe that would allow for a much less stressful and much more enjoyable Christmas and New Years. Just a thought. <br />Sending much love from Logan Ut. As always, you and Zoey will be in my prayers.<br />KarenSalinas familyhttps://www.blogger.com/profile/07559230479268867574noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-52309485161218499412011-12-21T19:51:22.318-08:002011-12-21T19:51:22.318-08:00Hi Heather,
We are with you in prayer for wonderf...Hi Heather,<br /><br />We are with you in prayer for wonderful results. Take care.Mayhttps://www.blogger.com/profile/11261005294052391862noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-69557860343990908132011-12-21T17:41:43.568-08:002011-12-21T17:41:43.568-08:00Sending positive thoughts that this works for Zoey...Sending positive thoughts that this works for Zoey. Be at peace with your decision. There is no definite answer and you can only go on the best data and advice. Really hope it works and she can stay off the meds.Megnoreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-61524389378967666082011-12-21T16:32:45.677-08:002011-12-21T16:32:45.677-08:00Heather,
I've read and lurked for a long tim...Heather, <br /><br />I've read and lurked for a long time, but rarely (maybe once?) commented. I cannot imagine how absolutely gut-wrenching this decision is for you. I just want you to know that I'll be praying. Zoey is a sweet and precious little girl.Life and Times . . .https://www.blogger.com/profile/16831765275767754572noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-50356469142836847902011-12-21T12:51:52.706-08:002011-12-21T12:51:52.706-08:00Daniel has been on Topamax for about ten years now...Daniel has been on Topamax for about ten years now. It's kept him pretty much seizure free. <br /><br />I too wonder if I'd see a leap in development if we were able to wean him, but my ped and neuro both advise against it. His EEG is abnormal, though.<br /><br />I don't know what to suggest at times like these except to pray about it and hope that the right choice becomes very clear.<br /><br />I had a hard decision to make awhile back involving growth hormone, and when I was doing the most soul-searching I just "happened" to bump into a developmental pediatrician (and I didn't even know we had one in my city) who had some strong opinions to share that backed up the direction I was leaning in.<br /><br />The thing is, I still question whether I did the right thing or not! When I do, I remind myself that I'm just making the best decisions available to me with the information and advice I have on hand. <br /><br />Thinking of you.Carolynhttps://www.blogger.com/profile/05377137120590834662noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-90722877282890332322011-12-21T12:33:38.515-08:002011-12-21T12:33:38.515-08:00Those are precious photos from the Buddy Walk! Sh...Those are precious photos from the Buddy Walk! She is constantly amazing us all.<br /><br />Prayers are certainly coming your way! HUGS!!!!Sweet Pea's Mommyhttps://www.blogger.com/profile/04865365312620255005noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-71796076051025995132011-12-21T11:43:50.843-08:002011-12-21T11:43:50.843-08:00I am so hoping it works. I don't think I woul...I am so hoping it works. I don't think I would have the nerve having watched my friend go through a long period of time with a daughter with uncontrollable seizures. But without taking a risk, one cannot have the possibility of moving forward.Catherinehttps://www.blogger.com/profile/11149885637140617891noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-27276288690646135272011-12-21T11:14:36.205-08:002011-12-21T11:14:36.205-08:00Praying hard for Zoey to soar and not have a singl...Praying hard for Zoey to soar and not have a single seizure! <br />Praying for peace for your mama's heart that wants the best for your girl.<br /> We have a little girl at church that had infantile spasms and has been off meds and seizure free for almost 2 years and wow what amazing progress she has made.Rochellehttps://www.blogger.com/profile/11866781944242761406noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-17058822386318698932011-12-21T10:25:01.384-08:002011-12-21T10:25:01.384-08:00That was my question as well. Have you had an EEG ...That was my question as well. Have you had an EEG lately? Maybe get one to have as baseline. And did he say that if the seizures started up again, that they would be harder to stop, or would they stop again with restarting the drug. Such a hard decision, seizures suck! We know that for sure. You want to see her be able to do more, but 50/50, I'm not sure I would take those odds either!Laceyhttps://www.blogger.com/profile/03321275110857561824noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-7927858251865008912011-12-21T09:01:56.851-08:002011-12-21T09:01:56.851-08:00its all grace isnt it. We cannot be perfect and yo...its all grace isnt it. We cannot be perfect and you know what they say about hindsight being 20/20. You dont have that yet. But, you have an incredible team that can help you navigate this ugly thing called IS- seizures. I agree that maybe you could request an eeg halfway through the wean? Trust yourself......<br />many prayers flying your way. (she is delightful! What a beauty you have on your hands, takes after her mama!)Annahttps://www.blogger.com/profile/05452607521750848540noreply@blogger.comtag:blogger.com,1999:blog-4997156159638877174.post-68202685328307987692011-12-21T08:51:43.190-08:002011-12-21T08:51:43.190-08:00bringing me to tears..well I say if shes been seiz...bringing me to tears..well I say if shes been seizure free long enough its worth it! I pray one day I will get Madie off her Depakote..she too has feeding difficulties.:( tough. Our sweet girls want to emerge and be strong and these darn drugs are so..yuck. Topamax was a crummy one for Madie..I very much remember getting her off clonopin too and she figured how to sit! :)lots of luck and hugs.Jamiehttps://www.blogger.com/profile/08806816819294256310noreply@blogger.com