tag:blogger.com,1999:blog-66829340608964747702024-02-19T00:12:57.283-05:00Alice in CraniolandOn June 18th 2013, our soon to be 5 month old baby girl was diagnosed with Left Coronal Craniosynostosis. We were told she missed the window for having the smaller endoscopic surgery and that she would need a major reconstructive surgery of her skull around one year of age. We were determined to find a doctor who would still do the smaller surgery. This is documentation of our journey in hopes of helping others who are going through the same thing.
Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.comBlogger51125tag:blogger.com,1999:blog-6682934060896474770.post-11132647766009298282021-04-15T21:46:00.010-04:002021-04-16T08:05:40.738-04:00Update about Alice's eyes<p>Alice has been going to the ophthalmologist regularly since her Cranio surgery. They first brought up concern with her eyes when she was about 2 years old. The doctor wanted to operate but we tried alternative options. We tried some vision therapy exercises on and off for a while. It seemed to help but the problem never went away. I started noticing it getting worse again recently so I brought her back in to get checked. They recommended surgery again but this time on both eyes. Her main problem is V pattern exotropia. Her eyes are just not working well together. It's very common for children with Craniosynostosis to have eye problems, specifically the kind that Alice has, Left Coronal Craniosynostosis. </p><p>It isn't easy putting her through more surgery, that's why I've tried to put it off for so long but I knew she needed to have it done. I was sick as can be leading up to it, even though I knew it was so much smaller than her Cranio surgery, it didn't make it any less nerve wracking. </p><p>She had surgery yesterday April 14th. She was incredibly brave but did talk to me a lot leading up to the surgery date and asked lots of questions. They worked on 2 muscles in one eye and one muscle in the other eye. She was a trooper and did amazingly well. She barely even shed a tear, even though I know she hurts. She woke up and said “That wasn’t so bad” I swear these cranio kids are so tough! My other kids definitely wouldn't have handled it so well. </p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3sU9MHPWkGBLAtnuPpyOb64gu4cUFQlC52qtJH8jxt8GMQrtObpQBvn_uUN5HWjlqIONfmieEgNN1kxSEWRhuErmSrIdvDrx6rEyPci9ZFl-Gs0Vib0u-FbUGDilIkGdweR-98HNRVc4/s2048/IMG-6452.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1539" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3sU9MHPWkGBLAtnuPpyOb64gu4cUFQlC52qtJH8jxt8GMQrtObpQBvn_uUN5HWjlqIONfmieEgNN1kxSEWRhuErmSrIdvDrx6rEyPci9ZFl-Gs0Vib0u-FbUGDilIkGdweR-98HNRVc4/s320/IMG-6452.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5GJ0utnznWD1lZUXn3Rjts3Cu4BsbW7oU_vlQZ2HxS_9hqlL9ugSpy0EZv0hAiPh8_wTRQOcz3263-z0nzllzuvxbfxBxC9YRPkCV-7Du9jk7VJ8E-jU4PEtLU-AyQaJygOeOXdZV7oA/s2048/IMG-6460.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5GJ0utnznWD1lZUXn3Rjts3Cu4BsbW7oU_vlQZ2HxS_9hqlL9ugSpy0EZv0hAiPh8_wTRQOcz3263-z0nzllzuvxbfxBxC9YRPkCV-7Du9jk7VJ8E-jU4PEtLU-AyQaJygOeOXdZV7oA/s320/IMG-6460.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQAW_ukJbCISCKADj_0Zca8D8XSpXIKYWmDfSYmg5XQH8KKPgc5kbLGr1zRCD-b-epRsWPDJ4EnXf_oOTVb43MA34mVgGuj__YfDkpsXG-mm8alWl29D46EEYlnS9YPNZx-OO5v2v2LO8/s2048/IMG-6465.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQAW_ukJbCISCKADj_0Zca8D8XSpXIKYWmDfSYmg5XQH8KKPgc5kbLGr1zRCD-b-epRsWPDJ4EnXf_oOTVb43MA34mVgGuj__YfDkpsXG-mm8alWl29D46EEYlnS9YPNZx-OO5v2v2LO8/s320/IMG-6465.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><p>She was in bed most of the day after surgery and wouldn't eat. She was hurting and her throat was bothering her from surgery. I finally got some applesauce in her before she went to bed last night. She woke up hungry this morning with a little better appetite. She was pretty puffy and her eyes were very red this morning. She had a post op appointment today. They took measurements and did eye tests. She is having some double vision periodically but overall she had a great report and expect her to heal well. Her eye alignment measurements were much improved. She will follow up in 6 weeks and we will know her final results then. It could take up to 2 weeks to heal and the redness to go away. Thank you all for your prayers and concern, it means a lot. </p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS4a8wzuVjZa4Huc2tf4Y4rvXkAClTL_MAXXIONZc-9giP9vaP9U_3VHbu5a2b27fgXUZyJK6jOq3OtdgYog6ygxV1uDJr2uqIZPMkeyvwO3wnqxrCwPQsZwRCy_ipt71RBhzwJrq2JSo/s2048/IMG-6474.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS4a8wzuVjZa4Huc2tf4Y4rvXkAClTL_MAXXIONZc-9giP9vaP9U_3VHbu5a2b27fgXUZyJK6jOq3OtdgYog6ygxV1uDJr2uqIZPMkeyvwO3wnqxrCwPQsZwRCy_ipt71RBhzwJrq2JSo/s320/IMG-6474.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2Lok9jCDCahTwPpEKupgkSs57msA_SxvMrY7oeF_ZNq0NGPCXY1HkmS7eNrLEL4zUFRxRdoxYg1uCYx-CCIMAZVg7wu5i-pup7Cn77WwNq999fh22NRCaTHBlMND_t2rP0o0-_Go6AOc/s2048/IMG-6483.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2Lok9jCDCahTwPpEKupgkSs57msA_SxvMrY7oeF_ZNq0NGPCXY1HkmS7eNrLEL4zUFRxRdoxYg1uCYx-CCIMAZVg7wu5i-pup7Cn77WwNq999fh22NRCaTHBlMND_t2rP0o0-_Go6AOc/s320/IMG-6483.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhQPHFCr49hwaBfPPOtFWt_BTGFtEp9r6KWddgeg0cAZh_Uqcf9A1rICnFKf3flHA1zwTCxyVVy-S0YNJ8pNAUnt9UZvj5Kv71iAA_odg3-ok-_pPBVR048cHcfsl-pgz0qqIfumllanM/s2048/IMG-6493.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhQPHFCr49hwaBfPPOtFWt_BTGFtEp9r6KWddgeg0cAZh_Uqcf9A1rICnFKf3flHA1zwTCxyVVy-S0YNJ8pNAUnt9UZvj5Kv71iAA_odg3-ok-_pPBVR048cHcfsl-pgz0qqIfumllanM/s320/IMG-6493.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_pXs5FW8b1_g3CC7WvuKrTbvxK48s_3OpnbsrN3plo7j2q4Ue9uhR78KfPr7s_Uf8-q1xA1VseswAeIvExB1D7i3VYhKu7Z0MDMnBxCF4eBbqWLDNKvOSfsR9f2dkIftq_LU3AwgI7PY/s2048/IMG-6498.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_pXs5FW8b1_g3CC7WvuKrTbvxK48s_3OpnbsrN3plo7j2q4Ue9uhR78KfPr7s_Uf8-q1xA1VseswAeIvExB1D7i3VYhKu7Z0MDMnBxCF4eBbqWLDNKvOSfsR9f2dkIftq_LU3AwgI7PY/s320/IMG-6498.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpJS4V6J_N1G8WnjbvnDrs58I1ZF342NZo5ZiBv4VxU9JMdsRoAaLDJTosWrwkZeHHsnaOf_AwN7NH5d-5oYAYiwo6sd_GmZXTsO3YGI59pDMqRGV9YFZq0mfblWSo0uzdaZP_sWXVeGY/s2048/IMG-6515.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpJS4V6J_N1G8WnjbvnDrs58I1ZF342NZo5ZiBv4VxU9JMdsRoAaLDJTosWrwkZeHHsnaOf_AwN7NH5d-5oYAYiwo6sd_GmZXTsO3YGI59pDMqRGV9YFZq0mfblWSo0uzdaZP_sWXVeGY/s320/IMG-6515.jpg" /></a></div><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxuSNwJLWx-01feZtaEkzKl7-M081OnJSPy_W3cCjZ30DseBU8JNna8_4wxE7_xA3qRc7BlHMMMT4nBoOqAI55mFNttq9-3Plfy3XLTUSBVzRMhIBZh-JTGdI124Ybw1sRZ2QHXbrwafU/s2048/IMG-6555.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1152" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxuSNwJLWx-01feZtaEkzKl7-M081OnJSPy_W3cCjZ30DseBU8JNna8_4wxE7_xA3qRc7BlHMMMT4nBoOqAI55mFNttq9-3Plfy3XLTUSBVzRMhIBZh-JTGdI124Ybw1sRZ2QHXbrwafU/s320/IMG-6555.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">example of V Pattern exotropia</td></tr></tbody></table><br /><p><br /></p><p><br /></p>Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com1tag:blogger.com,1999:blog-6682934060896474770.post-42764686132445586562020-07-12T22:05:00.000-04:002020-07-12T22:05:16.392-04:007 years post opHappy Cranioversary to our sweet girl!<br />
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I'm not sure how it's possible that it's been 7 years since that emotional July day. She's doing amazing and we are so grateful that we were able to find a doctor that would perform the endoscopic surgery on her. If I could do it all over again, I wouldn't change a thing. My gut instinct led me to fight for the endoscopic surgery and I know it was the right decision for her. I pray that she continues to do well and that her journey with 'Craniosynostosis' is in the past. Here'a a little throwback vs this year on July 4th. She's getting so big!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghzBo5Gh9RGg1_f3hBEvZ7xJOwBVOFXnrkoxsAU3aBhh16jkhGZybfGSSClXXhldrQuJlJGcOuoCjuSHJPE0-yj4GnDAMmvEGaOMzuZSmYYyog3-ugmVZNLE5BR5xmj4eMz-YoIuOP1Hk/s1600/2c.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1067" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghzBo5Gh9RGg1_f3hBEvZ7xJOwBVOFXnrkoxsAU3aBhh16jkhGZybfGSSClXXhldrQuJlJGcOuoCjuSHJPE0-yj4GnDAMmvEGaOMzuZSmYYyog3-ugmVZNLE5BR5xmj4eMz-YoIuOP1Hk/s320/2c.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">July 4th 2020</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvNkCCjfVsDzkuqOFYXjMk14Z7wSXjb7B8n39sG3Z8EA9CaUq7SyAGoJ09_0M7qyiIBudHtRYzkP2RWPj1P7UK6U3jLcDyf3_v-qorc6iyczT8lnVWsq-3v9RAcoOxiOd2BBXkVOLTNJk/s1600/1fourthofJuly.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1072" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvNkCCjfVsDzkuqOFYXjMk14Z7wSXjb7B8n39sG3Z8EA9CaUq7SyAGoJ09_0M7qyiIBudHtRYzkP2RWPj1P7UK6U3jLcDyf3_v-qorc6iyczT8lnVWsq-3v9RAcoOxiOd2BBXkVOLTNJk/s320/1fourthofJuly.jpg" width="214" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">2013 - a week before surgery</td></tr>
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<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-47077366210458329842020-05-19T22:31:00.002-04:002020-05-21T19:25:36.846-04:00“Something is wrong with my eyebrows”<br />
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I knew it would happen one day, the day she’d look in the mirror and ‘see it’. Left/Right Coronal Craniosynostosis and the asymmetry it causes is much more obvious in the mirror image. Tonight when getting ready for bed she looked in the mirror and said, “Something is wrong with my eyebrows, they look weird”. I asked her what she meant. She said “One is higher than the other one” We have talked to her about the surgery and how the doctors ‘fixed her head’ but not in a lot of detail. I told her that the Craniosynostosis was on the left side of her head so the left side may not look exactly like the right side and that she was beautiful.<br />
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We always said that if her asymmetry bothered her as she got older, then we would address that then. We will see but we are thankful she has done so well and hasn’t ‘needed’ any other surgery.<br />
With that being said, I wanted to follow up about her eye condition. As of now, we are just waiting it out and seeing how her eyes do. They seem to have improved so we are not rushing into surgery. If it starts to get bad again and bothers her then we will revisit that option.<br />
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I hope everyone is doing well and staying healthy in these crazy times.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR4eB-NklD2c2ubUo2OFO4lpvvN8Ni_MMidELnRe6YnplsfxzlnCJwYKYqBH_E-gu2s3GjECRVDxOUIe7ZHTHKiLbbxkYdzVYq9jKGVA6CWdXiTM3fBxsNvwTb2zaEIVp87Yg07Ks1so8/s1600/EAEA47E8-0DC9-4341-A01C-9A084F0D6B3F.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR4eB-NklD2c2ubUo2OFO4lpvvN8Ni_MMidELnRe6YnplsfxzlnCJwYKYqBH_E-gu2s3GjECRVDxOUIe7ZHTHKiLbbxkYdzVYq9jKGVA6CWdXiTM3fBxsNvwTb2zaEIVp87Yg07Ks1so8/s320/EAEA47E8-0DC9-4341-A01C-9A084F0D6B3F.jpeg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I ordered this shirt a couple years ago from Cranio Care Bears and had forgotten about it until recently 💕 </td></tr>
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Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com1tag:blogger.com,1999:blog-6682934060896474770.post-9048772814271268942020-01-27T23:53:00.000-05:002020-01-28T23:13:58.087-05:00<div class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal;">
<span class="s1">I can’t believe our sweet girl is 7. As I edited her birthday pictures, reality hit. Picture after picture I couldn’t deny what I was seeing...</span></div>
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<span class="s1">Last week I took Alice to the ophthalmologist because of concerns. Just when I think we are in the clear, I get a reminder that craniosynostosis will follow Alice forever. Alice will very likely be having eye surgery in the near future. She started having very noticeable problems again about a month ago. The drifting has gotten bad and it’s really bothering her. I am so reluctant and just want to avoid the surgery but my gut is telling me she needs to have this done.</span></div>
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<span class="s1">When she was cleared a while back, it was because she was able to control the drifting. She could pull it back in on cue. So they said she no longer needed the surgery. Now it is happening so often and she is not controlling it well. I don’t want her being bothered by it and blinking constantly. We’ve tried some vision therapy stuff (like we did before) but it hasn’t helped yet. We are going to give it more time then make a decision. </span></div>
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<span class="s1">I tried so hard to hold back the tears in the office that day. The word ‘surgery’ just triggered me. I couldn’t fight the tears. Every time I talk about it, I cry. The thought of her having to go through something else, after having such a big surgery when she was a baby, just kills me. No parent likes the thought of their kid being put under anesthesia. The thought of my other kids having surgery on anything is upsetting as well, this just triggers me in a different way. It’s so hard to put into words how it makes me feel. I know this is a very small surgery compared to her craniosynostosis surgery but it doesn’t make it easier. I knew my friend in Texas would understand how I am feeling so I messaged her right away. Her son also had surgery for craniosynostosis when he was a baby so she “gets it”. She wishes, like I do, that we could just put this all behind us. </span></div>
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<span class="s1">It took me a week to find the words. Just wanted to give a quick update Please keep her in your thoughts. I will keep you posted. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCxJcHDrMEJbFX2wXxgtSoMa1VTMJD9vi-x-60V2hDCl4BQF-3NK_Mv3MAd6U2OXp41AH8TE6o8Bl7txWsQYg2vpSMacOXI2hnQ5TWlrFrOOlMNJ8d0BUcQFIpTAL45Ayh7SZqZv019wE/s1600/1Alice1iWEB.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="575" data-original-width="851" height="216" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCxJcHDrMEJbFX2wXxgtSoMa1VTMJD9vi-x-60V2hDCl4BQF-3NK_Mv3MAd6U2OXp41AH8TE6o8Bl7txWsQYg2vpSMacOXI2hnQ5TWlrFrOOlMNJ8d0BUcQFIpTAL45Ayh7SZqZv019wE/s320/1Alice1iWEB.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy 7th Birthday Alice!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Can’t believe this sweet thing is 7 years old!</td></tr>
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Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-80795366151271307222019-11-15T22:23:00.000-05:002019-11-15T22:23:23.871-05:00Long overdo updateHey everyone! I apologize for such a long gap in posting. Time is just flying by!<br />
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It's hard to believe Alice will be 7 years old in a couple of months. I remember in the beginning of this journey, it seemed like time moved SO slow. Waiting for a diagnosis was agonizing, then waiting for the surgery date, in tears everyday...then the LONG year in the helmet. I'm not sure how time has flown by since then but it has and here we are with a sweet, beautiful smart little girl who made it through and is doing amazingly well. I am so thankful that I listened to my gut instinct and pushed for the endoscopic surgery. If I had to do it all over again, I would still make the same decision.<br />
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We took Alice for another opinion a while back. It was actually the first neurosurgeon that diagnosed her at VCU, Dr Gary Tye. We wanted to hear his thoughts all of these years later. He had ZERO concerns. The plastic surgeon also came into the appointment. She took pictures and told us she thought she looked great. She did mention that at any time in the future we wanted to do a small 'fill in' surgery, we could always do that but they both agreed that the average person would never know she had anything wrong. She still has a small indentation on her forehead but it has come SO far since she came out of that helmet. Of course we see it, because we know what she went through but to this day Alice has never asked about anything looking different. She knows about the surgery and the helmet but has never seen anything in the mirror that she questioned. So we will follow up as needed as far as her cranio.<br />
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We also had a followup at the ophthalmologist. They thoroughly examined her and said that she had outgrown the eye problem that she had and that she no longer needed to have the surgery to have it corrected. Oh my goodness that was a relief. Again, I followed that mommy gut instinct and chose not to have the surgery. We did some simple eye exercises with her and she ended up outgrowing the issue. I am not the type that's going to immediately jump and do exactly what the doctor says. I will get second and third opinions and do my own research for my child. I do the same for myself with issues I've had in recent years. I try my best to avoid surgical intervention unless it's absolutely necessary. Thankfully Alice was able to avoid the surgery and is doing well. I pray that she will continue doing well. She is a healthy, normal little girl and I'm so proud to be her Mom.<br />
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Thank you to all of you that take the time to read my blog. I appreciate your comments and messages so much. All I wanted when I started was to help other parents that were in my shoes. I truly hope it has.<br />
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We took Alice to Disney World for her first time about a month ago. Here is a picture of her with Jasmine and Aladdin. Seeing that smile just melts my heart.<br />
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<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-27420612615945424322017-08-28T21:50:00.003-04:002017-08-28T22:03:16.852-04:004 years post op - neurosurgeon appointment<br />
Alice is a little over 4 years post op. (surgery date- July 12, 2013)<br />
Each year near her "Cranioversary' I take photos of her, so that I can document her progress.<br />
Here are a couple from July 2017.<br />
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Alice had a followup today with her neurosurgeon, Dr Magge. It's been almost a year since we had seen him. We were past due to see him, she should have seen him in the Spring. This was the longest we have gone without seeing him since her surgery. I was very anxious to say the least.<br />
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I know many look at her and don't know she ever had surgery or the ones that do know may think 'she had surgery, she's fixed now' The thing is, her skull isn't 'normal' like the average skull. Yes he made room for her brain to grow but he will continue to follow her into her teenage years. </div>
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Why? He's monitoring the growth of her skull, making sure it charts within normal range and that growth doesn't slow down. If it does, then that would be a red flag. Dr Magge also wants her to continue to be monitored every year by an ophthalmologist and checked for Papilledema, which is the swelling of the optic nerve as it enters the back of the eye due to raised intracranial pressure, which would be a red flag also. This is all pretty standard for most cranio children. </div>
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Dr Magge took several measurements today of her head. Her head on the left side is about 12mm less than the right side. But her head growth is good overall, continuing to progress on the growth curve. He did discuss how he could surgically fix the left side of her forehead, an orbital advancement, an ear to ear incision, basically a reconstruction of the front part of her skull, forehead and eye sockets BUT I just can't put her through something like that solely for a cosmetic reason, I would only agree if it was medically necessary, meaning signs of intracranial pressure.<br />
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I talked to him about how I read that when the sinuses start to form, that things will improve even more, physically. He looked at me and smiled and said " I forget I'm talking to the cranio expert" lol. No I am definitely not an expert but I am very knowledgeable on the subject since June of 2013, I have done TONS of reading. He does think things will continue to improve for many years to come, as she gets older.<br />
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Overall it was a great checkup. I will always worry about her but I feel a little sense of relief after seeing him again after so long. I am so thankful she was able to have this less invasive endoscopic surgery and that she is doing so well. She has no delays and is a very smart little girl. Her head/face is not perfectly symmetrical but who's is, cranio or no cranio.<br />
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We followup with him again in one year. </div>
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Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com1tag:blogger.com,1999:blog-6682934060896474770.post-36195466492286331422017-03-20T23:33:00.000-04:002017-04-02T09:47:43.330-04:00Facts about endoscopic surgery<br />
The one thing I have tried to do is just stick to the known facts about endoscopic surgery when trying to help others. I had to research so much to get accurate factual information (instead of opinions being thrown at me) The main reason I started this blog was to make it easier to find information about endoscopic surgery. I take this same approach on social media and on support groups. All I want to do is highlight the benefits of endoscopic surgery and make people more aware that it can be done up to six months of age. I genuinely want to help people. I have learned SO much in the past 4 years since Alice was first diagnosed and I just want to share what I know.<br />
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Dr Mark Proctor is a well known neurosurgeon in Boston. Alice was scheduled to have surgery with him initially however insurance denied it because they found a doctor closer to us that would do endoscopic surgery on her. He trained under Dr Proctor, so it was a huge blessing.<br />
Dr Proctor did a study about the benefits of endoscopic surgery for each type of craniosynostosis. This is based on his actual experience, about actual cases. It is very informative and full of FACTS. He offers both types of surgeries. I do feel like everyone needs to see a doctor that offers both types of surgeries or get 2nd or even 3rd opinions.<br />
Here is a link to the article...<br />
<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4729850/">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4729850/</a><br />
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Since my daughter had unicoronal (left coronal) I need to point out how much I agree with this study. Everything that is stated has been true for our case. Dr Proctor states one of the early benefits of endoscopic surgery for coronal babies is that the nose and mouth asymmetry starts to correct quickly after surgery. Yes! It does, that is one of the first things we noticed. It was amazing to see how things shifted so quickly after the suture was opened like it should be. Also in the before picture of Alice, her left eye socket was significantly larger than her right one. This was also corrected. The brow bone correction is slower with endoscopic surgery, but I was ok with that. Knowing that immediately after surgery, my daughter's brain had room to grow. I didn't have to wait and worry for months wondering if she had pressure and also continue to watch her facial features worsen. The flattening on her brow has continued to improve each year, just as Dr Proctor stated. You have to be patient. I understand that's hard, but it is amazing to see the changes. Endoscopic surgery is a pretty natural approach, it essentially recreates the suture so that the brain can grow without being restricted. The helmet then helps to shape the skull. <br />
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<tr><td class="tr-caption" style="text-align: center;">The before and after photos speak for themselves,<br />
It is truly amazing to see how far she has come.</td></tr>
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With that being said, when searching for a surgeon who offers endoscopic surgery please make sure they are experienced. A HUGE component in the outcome of your child's results is helmet therapy. For coronal babies it is very important that they stay in the helmet for as long as possible. Alice wore hers until she was 18 months old (1 year post op) Helmet therapy is crucial after having endoscopic surgery..<br />
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This a video I made and poem I wrote for Alice's 3 year Cranioversary (3 years post op)<br />
It shows her progress over the years. I thought I would share again.<br />
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<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-82483304112963169132016-11-22T22:42:00.000-05:002017-03-20T23:40:14.796-04:00Following my heart again...<br />
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A few weeks ago Alice returned back to the ophthalmologist because I noticed her eye drifting more often. I see it most often when she is looking in to the distance at something. We were told to call them if we noticed that things were worse, so I did. She has strabismus, more specifically intermittent exotropia. Strabisbus is something that is very common with Craniosynostosis, unfortunately. They want to do eye muscle surgery within the next few months to prevent more problems. I'll be honest, it took everything I had not to fall apart the second that she said the word 'surgery'. The whole idea of it obviously triggers some things for me...even though this surgery is much smaller, it still doesn't sit well. I've been pretty upset about it and didn't want to tell anyone. I suppose it's my way of pretending it's not happening. We were thinking about waiting until February after the holidays and after her birthday but then we decided waiting was just harder...so we scheduled it for early December.<br />
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In the mean time I started noticing Alice's right eye not acting quite right either. I was not totally confident that fixing one eye would magically fix the problem. I researched online and started reading about Vision therapy. I started wondering if this would be a possibility for Alice. My heart would simply not accept that surgery was the only option for her. I started calling all over the area and could only find one optometrist that offered it. I scheduled her for an evaluation asap. She was evaluated today and he feels that her eyes are not that bad and is VERY confident that she will improve, with some simple exercises he showed me. He did also note the right eye was a little off as well. He didn't think her eyes were bad enough to suggest therapy sessions 1-2 times a week like many other patients do. We will followup with him in 4 months and if in that time she has not improved, we will revisit the surgery option. We have nothing to lose by giving this a try.<br />
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Please keep our sweet girl in your thoughts. We only want the best for her. With her skull surgery, I followed my heart and pushed for another opinion. I felt the same calling in this circumstance. I can only hope and pray it helps her.<br />
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Below is a video of us practicing one of the techniques we learned today. Focusing on something in near proximity to essentially cross her eyes. The hope is this will help her eyes and brain to work better together. You can see at the end that her right eye tried to focus on me and her left eye goes out.<br />
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UPDATE: March 2017<br />
Alice is now able to bring her eye back in on command when it drifts. This is wonderful news! She is not leaving it out there anymore and I know that the vision therapy exercises have helped with this!!<br />
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<a href="https://youtu.be/5BIKvYDwR5E">https://youtu.be/5BIKvYDwR5E</a><br />
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<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-1251970821378637532016-09-14T23:09:00.002-04:002017-04-04T21:43:05.586-04:003+ years neurosurgeon followup <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<span style="color: #1d2129; font-family: helvetica, arial, sans-serif;"><span style="background-color: #f3f3f3; font-size: 14px; white-space: pre-wrap;">Alice in the atrium lobby at the hospital where she had surgery</span></span></div>
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Alice had a followup with Dr Magge today. She is about 3 years 2 months post op. She has been out of her helmet for about 2 years and 2 months.<br />
So just a brief summary of her visit...<br />
Overall, Dr Magge didn't have any immediate concerns, meaning her brain still has the room it needs. Her head is gradually growing, although she is still in the 10th percentile. He is going to continue to monitor her. We discussed symptoms to look out for, which would indicate signs of pressure in the brain. We followup again in 6 months. We are hopeful that she won't need any more surgery but we know that is not a guarantee, just as with an 'cranio' child, no matter which type of surgery they had...the most important thing is that as soon as they opened her skull up during endoscopic surgery, her brain immediately had room to grow. Any other surgery recommended would most likely be for cosmetic reasons, which we wont consider unless it's for medical reasons.<br />
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We went to a Nationals game after her appointment today...she had SO much fun!!!<br />
She loves baseball and wearing caps (I think her helmet had an influence on that lol)<br />
<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-7055503741035485462016-08-12T00:24:00.000-04:002016-08-20T13:12:48.165-04:00Always a Beauty to meI have mentioned in previous posts, how the longer you wait to treat unicoronal (left or right) craniosynostosis, the more the facial features are affected...causing more asymmetry and eye problems, in particular by waiting to have CVR. Which is why being diagnosed and treated in a timely manor is so important. Six months of age is the cut off for endoscopic surgery. I feel very strongly about treating craniosynostosis as early as possible, to prevent even more medical problems.<br />
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Alice has done amazingly well. She was 5 and a half months old when she had surgery. She did so well with her helmet, without that, she would not have the results she has today. I can't stress enough how important it is to keep that helmet on 23 hours a day, and the longer the baby wears it, the better. Most doctors recommend wearing it up to a year, which I think is VERY important to the end result. Alice wore hers until she was 18 months old, she wore it for almost exactly a year.<br />
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3 years post op and we are starting to see a few minor issues. At Alice's followup at the ophthalmologist, they observed her left eye drifting. This only seems to happen when she 'stares off into space' or becomes tired. We followup in 6 months, but if she starts drifting more often, then we need to call them. I can just hope and pray that it doesn't get worse. I can only imagine how much more her eye would have been affected if we had waited 6 more months to have the larger surgery. Babies with coronal, in particular, should be followed by a ophthalmologist. I hate to think of her having a surgery for her eye muscle, but if she does, I know it's a much smaller procedure than her skull surgery and she will be ok. Will keep you updated.<br />
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Coronal babies will never have perfectly symmetrical faces (really, who does?) but I'm ok with that, and it doesn't matter which surgery they get. I know by treating her sooner rather than later (vs 1 year of age, as recommended for CVR) not only gave her room for her brain to grow but it also helped to improve her facial asymmetry from getting even worse. As soon as Alice had the surgery and they opened her skull up how it was supposed to be, her facial asymmetry started improving right away.<br />
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Alice was dealt a card in life that I wish she hadn't been, but it has taught me so much. Not only have I learned about a condition that I never heard of. I also learned how strong, brave and resilient these cranio babies are and just how beautiful they truly are... scars, imperfections and all.<br />
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Alice will always be a 'Beauty' to me. Which is fitting because she is really loving Princess Belle these days and insists on sleeping in her dress and crown.<br />
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She follows up with her neurosurgeon in September, we are very eager to hear what he has to say...<br />
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<tr><td class="tr-caption" style="text-align: center;">Always a Beauty to me</td></tr>
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<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-18307477411287681482016-07-12T09:02:00.001-04:002016-07-12T09:02:14.360-04:003 years post op<div class="separator" style="clear: both; text-align: center;">
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It's so hard to believe how far we have come since we first heard the word Craniosynostosis. It felt as though time stood still that day...and everyday leading up to surgery. To this day, I get emotional about what she went through and it's sometimes hard for me to talk about it without tearing up. </div>
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When we were told she would be in a helmet for up to a year that seemed like eternity. but here we are 3 years post op and it's been 2 years since she's been out of her helmet. It flew by and she's doing great. All that worry and just look at her, I couldn't be more proud. Now I'm not saying I don't worry. I will always worry about her, I do with my other children too, it's just a little more of a worry with her. So forgive me if I hover around her more than the average parent. I will always be protective of her and of her skull. </div>
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We are so happy with her results and still so grateful that we fought for the endoscopic surgery and that she was a candidate for it. Thankful to Dr Magge in Washington DC, thankful to our orthotist at Hanger. Without them, it wouldn't have been possible. </div>
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I made a video and wrote a poem to celebrate this special and emotional day.</div>
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You can view it here...</div>
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<br /><iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/vnfHhy3SVMk/0.jpg" src="https://www.youtube.com/embed/vnfHhy3SVMk?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<a href="https://www.youtube.com/watch?v=vnfHhy3SVMk">https://www.youtube.com/watch?v=vnfHhy3SVMk</a> </div>
Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-10885482272372698722016-05-31T23:08:00.001-04:002016-06-01T11:34:35.579-04:00The mind of a Cranio ParentIt is such a whirlwind of emotions, this whole cranio journey. It's hard to believe it's almost been 3 years since I first heard the word CRANIOSYNOSTOSIS. In the moment it felt like my world stood still. I still get teary eyed thinking about everything that Alice went through and the emotions that I experienced the first year of Alice's life....anger, fear, joy, happiness...geesh it was quite a journey!!<br />
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Cranio has changed me as a person...for one, I will never be able to just admire a baby anymore and say "awhhh"...I will inspect EVERY baby head, child head and even adult head. (it comes w the territory lol) You too will become a 'head picker' through this journey...<br />
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Another thing that will probably never go away, is how much you worry about your cranio baby. It does not matter what surgery they have or anything...you WILL worry your heart out. This is normal. Even almost 3 years later, I worry, not quite as much as I did in the beginning, but I do. You'll worry about your baby's head, appearance...everything. Just remember YOU are doing everything you can to make your child 'better'. Surgery is necessary to correct this condition. (except for some metopic cases)<br />
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The thing we loved about endoscopic surgery is that we didn't have to wait. The Doctor released that suture and instantly, her brain had the room in needed to grow. That was why we pushed so hard for endo...I just wanted her problem treated as simply and as quickly as possible. The idea of a cut in her skull VS a reconstruction of the skull sat better with me. The skull is essentially how it should have been at birth, and the skull and brain can grow as it should.<br />
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Here is miss Alice being so proud of her new haircut! (her 1st haircut was by the neurosurgeon)<br />
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<tr><td class="tr-caption" style="text-align: center;">She'll be 3 years post op on July 12<br />
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<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-61557479830412017762016-05-24T15:38:00.000-04:002016-05-24T15:39:54.846-04:00Craniosynostosis Endoscopic Surgery Support GroupPlease join this group and post any questions or stories about Endoscopic Surgery for Craniosynostosis. Hoping to help others just starting this journey with Craniosynostosis<br />
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<a href="https://www.facebook.com/groups/523481684505643/">https://www.facebook.com/groups/523481684505643/</a><br />
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<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-57636656137190179692016-01-29T00:01:00.002-05:002016-01-29T09:50:51.093-05:00She really has come so far...<div class="separator" style="clear: both; text-align: center;">
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Our sweet Alice turned 3 years old today. I thought I would post a comparison picture to celebrate how far she's come in 2 and a half years. She had endoscopic surgery for left coronal (unicoronal) craniosynostosis when she was 5 months old.<br />
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I noticed her asymmetry at birth and I kick myself for not following my gut feeling and getting it checked out sooner. I convinced myself not to worry and that it was just from the birthing process. Thank goodness it was caught in time...it was caught just barely in time for her to be a candidate for the endoscopic surgery. Moral of the story is to always follow your gut feeling!Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-69534748497608972842015-09-02T22:53:00.001-04:002020-01-30T11:01:30.093-05:00Photo timeline of Alice's journey<div class="separator" style="clear: both; text-align: center;">
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I thought I would post some before and after pictures of Alice through her cranio journey for new visitors to this site to see. She had endoscopic surgery for left coronal craniosynostosis at 5 and a half months old. She wore a helmet from Hanger for 1 year (she went through 2 helmets in that time). She is now a little over 2 years post op and doing great!<br />
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<tr><td class="tr-caption" style="text-align: center;">1 day old<br />
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<tr><td class="tr-caption" style="text-align: center;">5 days before surgery</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">recovery room</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">1 day after surgery</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">4 days after surgery</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOZ3M7MerGKOG1xdswf5WvAJZNE75mwwibYcWdnGe2vcvBfBiDkUouQXuyrUydlKUzmM9YZVhHIjquTgNf_X9_DkMVIRNhODk16SqxHwNDAgBe0kAFIsDaBD_AO9xR_8Z-u2UswbFgQi4/s1600/Alice.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOZ3M7MerGKOG1xdswf5WvAJZNE75mwwibYcWdnGe2vcvBfBiDkUouQXuyrUydlKUzmM9YZVhHIjquTgNf_X9_DkMVIRNhODk16SqxHwNDAgBe0kAFIsDaBD_AO9xR_8Z-u2UswbFgQi4/s320/Alice.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">1 month into helmet therapy</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">6 months into helmet therapy</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPKjLc25cmLGHdQXKKXJAiuC4jdyvKRWRso4qsQ-xobkDFT6m4pqsBpI5meaqMy7ZIQGN7b1024l1984L_Hbec12ssFXAfLyFK1VEXf_J2BZHxgHfgU2O7Tarwk8hN_Ue5W1zMJ_DT8ec/s1600/1helmet.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPKjLc25cmLGHdQXKKXJAiuC4jdyvKRWRso4qsQ-xobkDFT6m4pqsBpI5meaqMy7ZIQGN7b1024l1984L_Hbec12ssFXAfLyFK1VEXf_J2BZHxgHfgU2O7Tarwk8hN_Ue5W1zMJ_DT8ec/s320/1helmet.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">2 months before helmet graduation</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvgue3bJW2lYHLhkpUYMqMRBtSx80q5fj9I2BqnWAuv0_7Xpc0Pv9JW3LXxNUktnqSpFbZ4UjY8rJljTfImrpjxjd4knykjrmAdkao9kFXRbk0OFZbF5T8Fu_m264VKMyTas2Pl5uwLuM/s1600/1wagonride2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvgue3bJW2lYHLhkpUYMqMRBtSx80q5fj9I2BqnWAuv0_7Xpc0Pv9JW3LXxNUktnqSpFbZ4UjY8rJljTfImrpjxjd4knykjrmAdkao9kFXRbk0OFZbF5T8Fu_m264VKMyTas2Pl5uwLuM/s320/1wagonride2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">1 year post op, all done with the helmet</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVod8iACAmOrXKOxCANoPsVHtk7cko6pvCe-mHmJhS_cidBvEu5Feq9dLsQNscbCubNTjVHkFa3tCaziFtB7Nu115YfPHzd3AD_XCdzxxDLRlghM7ep57zQrqbxANcEIguNAngQKhSeVM/s1600/1alice2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVod8iACAmOrXKOxCANoPsVHtk7cko6pvCe-mHmJhS_cidBvEu5Feq9dLsQNscbCubNTjVHkFa3tCaziFtB7Nu115YfPHzd3AD_XCdzxxDLRlghM7ep57zQrqbxANcEIguNAngQKhSeVM/s320/1alice2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">6 months post helmet</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkipaAvWG7zSniG50NbsmuAc-BMyzkQ_ftkrdQWDEH7QeuPsJOW4P1tJMWVfGoSF_xKzQBHYBPYU9LdHgo5Zy1pmNWhaHR08R-miaXvMiCeAkB2uVYDI1meg6kMXQOOGldeXwfKPuE9M4/s1600/1aliceFINALcrop.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkipaAvWG7zSniG50NbsmuAc-BMyzkQ_ftkrdQWDEH7QeuPsJOW4P1tJMWVfGoSF_xKzQBHYBPYU9LdHgo5Zy1pmNWhaHR08R-miaXvMiCeAkB2uVYDI1meg6kMXQOOGldeXwfKPuE9M4/s320/1aliceFINALcrop.jpg" width="236" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">almost 2 years post op</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">3 years post op</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">4 years post op</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">5 years post op</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyTVrjUDZvwoKSVhgFdJEObF8Ipy901Eq8a4PMVJz2JRqnIdj2SWvZPx7BhAvJoZ7klJDi1uDXMuuq-H7BBux3hcY6te237_Gh4i_EwiA9dL0aXU6GQfABjepx6gyYT0GKX3genAyqwnc/s1600/teeth1FINAL2WEBBB.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="567" data-original-width="851" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyTVrjUDZvwoKSVhgFdJEObF8Ipy901Eq8a4PMVJz2JRqnIdj2SWvZPx7BhAvJoZ7klJDi1uDXMuuq-H7BBux3hcY6te237_Gh4i_EwiA9dL0aXU6GQfABjepx6gyYT0GKX3genAyqwnc/s320/teeth1FINAL2WEBBB.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">6 years post op</td></tr>
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Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-71498949301018242022015-07-12T08:52:00.001-04:002015-07-12T08:52:02.863-04:002 years post op!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlrIIBtnNbU8UXbnS_z00KgyDRjI91ZynRgoAq91zBqWR_Coss6NVUD6yhPTdSzbOSTvtDF0yxhKzKtRy7QCbU37HACe6nV2ZIdUwbxCjkHJITrbNnewjKYUxbYxalgghyphenhyphen7CuYlQ1UygI/s1600/1aalicebeforeafter.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="204" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlrIIBtnNbU8UXbnS_z00KgyDRjI91ZynRgoAq91zBqWR_Coss6NVUD6yhPTdSzbOSTvtDF0yxhKzKtRy7QCbU37HACe6nV2ZIdUwbxCjkHJITrbNnewjKYUxbYxalgghyphenhyphen7CuYlQ1UygI/s320/1aalicebeforeafter.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small; text-align: start;">Happy 2nd Cranioversary Alice!</span></td></tr>
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I can hardly believe it's been two years since this sweet girl underwent skull surgery. It was the scariest and most emotional thing I have ever had to do, handing my 5 month old daughter over for surgery. The strength she showed me as a baby was truly remarkable. She was smiling less than 24 hours after having a piece of her skull removed. She has come so far in two years! She will be followed by her neurosurgeon for years to come to make sure her skull is growing the way it should be. We are so thankful her Craniosynostosis was caught in time to have the endoscopic surgery option! She is doing wonderful and I would definitely choose this option again if I had to do it over.<br />
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Here's the link to my blog about her surgery.<br />
<a href="http://coronalcraniosynostosis.blogspot.com/2013/07/surgery-story.html">http://coronalcraniosynostosis.blogspot.com/2013/07/surgery-story.html</a><br />
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<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-86805083566712931402015-02-04T21:44:00.001-05:002015-02-04T21:54:49.788-05:00Alice's 2nd Birthday & Neurosurgeon Followup<br />
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<tr><td class="tr-caption" style="text-align: center;">Happy 2nd Birthday Alice!<br />
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I can't believe our baby is 2! She has brought us so much joy over the past 2 years. She has truly blessed our family. Alice had a wonderful time celebrating! She had so much fun at the Children's Museum...and she loved her Frozen cake!<br />
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We followed up with Dr Magge this week. Overall, he think she looks great and has no immediate concerns. He thought she had made great progress and said she would continue to progress over the next few years. He reminded us that since she was on the older side for endoscopic surgery that her results may not be as good as a younger baby, which we knew going in, but we chose to go with the least invasive option possible, that was really important to us. We didn't want her going through a larger surgery when her medical concerns could be treated with the endoscopic surgery. He thought her facial asymmetry looked great and had improved a great deal. He said that is not something you get with the larger CVR surgery. Those babies may not have a flat spot on their forehead, but their nose and mouth cannot be corrected in that surgery. We did realize that and I am glad that we chose this option...I feel that it prevented further asymmetry of her face and also "stopped craniosynostosis in it's tracks" as a friend put it. </div>
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Dr Magge told us that he will followup with us again in 6 months and track her growth and her progress. He had no concerns this week and felt that there was enough room for her brain to grow...but that it something he will continue to watch and monitor for MANY years to come. Signs for us to look out for would be headaches, restlessness, irritability, etc....signs that would point to pressure on her brain. Things he is looking for is progressive growth of her skull. He takes many different angles of measurements. If at any times she stops progressing or growing at a normal rate, that would be a reason for concern. We don't anticipate this happening and praying she will be in the clear of more surgery. However, we are very glad he is monitoring her so well. </div>
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As always, if anyone that has stumbled across this site and is looking for more information or would like to talk to me about Alice's journey, please feel free to email me at AliceinCranioland@gmail.com or contact me at www.facebook.com/AliceinCranioland.</div>
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<tr><td class="tr-caption" style="text-align: center;">One of her favorite gifts</td></tr>
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<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-57751441214865272282014-09-08T23:01:00.000-04:002015-10-01T14:18:04.111-04:00Neurosurgeon Followup, after helmetAlice had a followup appointment with Dr Magge today in DC. It was her first time seeing him since coming out of the helmet. It was a pretty horrible drive there in the rain and Alice was not herself....including in the room with Dr Magge. She's at the age where's she's scared of everything...and she DID NOT want anyone touching her besides her family.<br />
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Dr Magge thought she looked pretty good. He took head measurements and she had a little head growth since our last appt in June. He could also feel the bone bridging over the gap where he did the strip craniectomy. Which basically means its growing back together. He asked us if there were any concerns with her developmentally or her complaining of headaches or holding her head...and we said no. These things would be signs of pressure on her brain.<br />
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He told us that he would be following her for many years after surgery. He also said that just because she had surgery it doesn't mean she is cured of Craniosynostosis. It's something he will have to watch and monitor.<br />
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Praying that everything will be ok and that there will be plenty of room for her brain to grow. We will followup with him in 6 months.<br />
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<tr><td class="tr-caption" style="text-align: center;">waiting to see Dr Magge</td></tr>
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September is Craniofacial acceptance month. Please share Alice's story to help us raise awareness. Thank you.<br />
<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-85405558195653161702014-07-30T22:59:00.000-04:002015-06-12T23:03:19.121-04:00Life after the helmetGoing into Alice's surgery all I could think about was getting her the least invasive surgery option, the helmet didn't even cross my mind. But after the surgery was over and I could finally breathe again...the helmet came soon after. I will admit, I was a little sad at the fact that she had to wear it, but happy she could have the endoscopic option. I couldn't believe she had to wear it for a whole year, it seemed like an eternity. At the same time I knew how important the helmet was to her end result.<br />
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The feelings I had about the helmet in the beginning quickly subsided. It became part of her. At first it was weird seeing her in the helmet, but after a month or so it was very strange seeing her without it. Alice with the helmet on was our new norm. I honestly had anxiety when it was off, especially as she became mobile. It was truly a blessing during all of those falls when she first learned how to walk.<br />
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<tr><td class="tr-caption" style="text-align: center;">Love that we can still use her flowers and bows from her helmet<br />
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So getting used to the helmet being off has been alot different than I thought it would be. Initially I was excited that it was over...but soon after I started having this urge and want to put it back on her...it really was hard to NOT put it on her...I wanted it on. I was actually sad that it wasn't on. I was so used to her in it...her squishy little cheeks, that sweet flower velcrowed on her helmet...I even got used to the headbutts and velcrow burn lol....like I said that was our norm. Even Alice has had some adjusting to do...she was used to have that security of her helmet, she would bang her head on things...walk into things and she would never feel any pain. She's had MANY boo boos and bangs on her head in the two weeks she has had it off. It's like she didn't understand what the feeling of pain was on her head when she hit it. She would rub it and looked perplexed...like "What just happened?"<br />
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In the beginning it was hard getting used to holding her with it on, nursing her, rocking her, even kissing her cheek...the helmet definitely intruded on those things a bit...but I got used to it. We learned to work around it and it wasn't a big deal. I can't tell you how much I cherish those things now though...just holding her sweet little head, kissing it, rocking her...my goodness it's just the best feeling. It's like I am reliving the newborn/baby stage all over (except she doesn't stay as still lol)<br />
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<tr><td class="tr-caption" style="text-align: center;">18 months old</td></tr>
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Honestly, the helmet is not an inconvenience at all to the baby. It really isn't...they adapt to it faster than we do. Alice even walks up to me and hands me the helmet now and wants it back on. So for those parents considering endoscopic surgery for their baby that may be reading this...please don't let the helmet deter you. One year in the helmet is a very short time compared to their life span. It seems like a long time at first but it will go by faster than you think. I seriously can't believe how fast it flew by! If I had to choose which surgery to have all over again, I wouldn't hesitate to go the endoscopic route.<br />
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We enjoyed decorating her helmet very much. We used her helmet to help spread awareness and I am continuing to spread awareness in any way I can.<br />
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We followup with Dr Magge at the beginning of September.<br />
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<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-26536508692419814092014-07-17T23:20:00.002-04:002015-07-17T16:29:39.679-04:00So long farewell...Wow...I can hardly register the emotions I am feeling today...<br />
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I have been going to Hanger every two weeks for a year now. At the beginning of June, Daniel, at Hanger, did a laser scan on Alice. Four weeks later he did another scan to see if there had been any change. At this point in helmet therapy change is minimal. So Dr Magge wanted to see the comparison to see if the helmet was doing any good at all.<br />
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From the beginning of June to 4 weeks later, there had been only a half of a millimeter of change over her left coronal area (forehead area) Today compared to two weeks ago there was no change. So Daniel doesn't think the helmet is doing anything and she wasn't benefiting from it anymore. As he's saying these words I'm in disbelief...and wasn't sure if I was going to cry or jump up and down. I made it to the checkout counter and he brought all the girls there up to say goodbye to us. This place has been like a second home...yes of course I would miss seeing them. That has been our life for the past year. I couldn't believe it was over. A flood of memories of the last year and emotions came over me and I just lost it...couldn't hold the tears back.<br />
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<tr><td class="tr-caption" style="text-align: center;">The little hat they put on Alice when they scan her</td></tr>
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The goal was for her to stay in the helmet until she is 18 months of age...she will be 18 months in 10 days. Pretty darn close. She has come so far! The tears I cried today were happy tears, grateful tears and tears of worry...I will always worry about her. The worry didn't stop after surgery, the worry hasn't stopped since. Everyday I would inspect her head wondering if everything is ok...worrying about the suture refusing or another suture refusing...and hoping the bone would grow back together as it should and that there won't be any gaps...looking at her eyes constantly, wondering if it will work itself out or if she'll need surgery on her eye...I mean the list just goes on and on. I can't even explain to you how emotional this whole ordeal has been. As a parent, you worry about your child anyways...but with Cranio it's a whole new level of worry. I am not naive...and am not going to pretend that the chance of a problems arising isn't there...but I know in my heart that we did the best thing we could for her. I am 100% positive that we made the right choice in choosing endoscopic surgery over CVR surgery. Everything else is in God's hands.<br />
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I hope and pray that one day every baby will be diagnosed early enough that their parents will also have the ability to choose which surgery they want for their child. That has been my goal from day one, raising awareness...and I will NOT stop trying to do so...<br />
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I cannot thank each and every one of you enough for your words of encouragement and prayers over the last year. Believe me, every single one has been noted and it means so much to me. I save and print everything so I can make a scrapbook for Alice about her cranio journey, so she will know about all the people who cared.<br />
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Thank you so much to Daniel at Hanger for being so wonderful and taking the time to make sure Alice's helmet was fitting correctly over the last year. I am so grateful!<br />
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Celebration video :-)<br />
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<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-58170566161355520062014-07-12T00:03:00.000-04:002015-06-12T23:19:12.081-04:00Happy Cranioversary - 1 year post opWhen I first found out Alice had Craniosynostosis, I was a mess of course...I couldn't believe my little baby had something wrong with her. I thought that was a horrible feeling...but it doesn't even compare to the day my baby had to have surgery. It was the most heart wrenching and emotional thing I have ever been through. Handing my 5 month old baby over to strangers...and watching them walk down the hall with her...knowing that they were about to drill into my baby's skull...I can't even put into words how hard this was for me. It took every ounce of energy I had not to collapse..I have never been so scared. I cried like never have before...I couldn't stop shaking. I wanted to be with her...I wanted to hold her. Fears took over my thoughts. Would she make it through the surgery? Would she be the same sweet Alice afterwards? Being away from her for those few hours seemed like eternity. I literally ran back to recovery when they called us...and when I saw her there...white as a ghost, laying limp...I think I literally didn't breathe for a couple minutes. I knew she wouldn't look great...but she was so unresponsive, I knew she wasn't in the clear. Was she going to wake up?<br />
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After 5 long hours, she did. The strength she showed as a 5 month old baby, amazes me. My sweet girl had a whole drilled in her skull, a strip of her skull was removed...and she was smiling a day later...even with one eye swollen shut. Really?! </div>
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I am so amazed and proud at how far she has come. I am forever grateful that Alice had the opportunity to have the endoscopic procedure, no matter what her future holds, I know that it was the best choice for her. </div>
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<tr><td class="tr-caption" style="text-align: center;">My sweet Cranio Princess,<br />
one year later</td></tr>
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I know the worry that I feel in my heart everyday is something only a cranio parent will understand. I don't think I will ever stop worrying about her. I thank each and every one of you for your thoughts comments and prayers over the last year. I read through all of them recently and plan to print them out to show Alice one day...so she will know just how many people prayed and cared for her.<br />
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<tr><td class="tr-caption" style="text-align: center;">One Year Post Op<br />
What a difference!</td></tr>
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Here is the link to my detailed blog post about her surgery<br />
<a href="http://coronalcraniosynostosis.blogspot.com/2013/07/surgery-story.html">http://coronalcraniosynostosis.blogspot.com/2013/07/surgery-story.html</a><br />
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This is a short video I made to help raise awareness and spread the word so that more babies can be diagnosed earlier. Please share this with your friends. <a href="https://www.youtube.com/watch?v=FaZ6SzCXDXU&feature=youtu.be">https://www.youtube.com/watch?v=FaZ6SzCXDXU&feature=youtu.be</a></div>
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Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-14688842051873610222014-06-02T23:06:00.001-04:002014-06-05T19:40:07.765-04:00How Far We Have Come!<br />
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<tr><td class="tr-caption" style="text-align: center;">On the way to DC</td></tr>
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As May, June, July approach...I must admit I feel more emotional than I thought I would feel. I am in awe of how far we have come! Last May I remember getting the referral to a neurosurgeon...and then the beginning of June is when we saw the neurosurgeon for the first time...and heard the word Craniosynostosis for the first time. And then July...fighting insurance, waiting for what seemed like eternity and then getting the green light for surgery. It was such a whirl wind of events. I was a wreck, for sure...but I had more strength than I thought I did. I look back and wonder how I didn't just crumble and fall apart. A friend of mine, who I met through a cranio forum, who's child also had the same type of cranio and same surgery shared this with me. It has been so nice to talk to her through this journey...<br />
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<tr><td class="tr-caption" style="text-align: center;">This is so perfectly fitting for our cranio journey</td></tr>
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We traveled to Washington DC today for Alice's followup with her neurosurgeon, Dr Magge. I think every parent who has a child with Craniosynostosis can relate to the nerves that come with each appointment. The construction and traffic on the way up didn't help the nerves at all.<br />
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My husband and I had some questions going into today's appointment...so we were eager to hear what Dr Magge had to say. Alice is on her 2nd helmet. She was in her first one just under 3 months...and has been in her current one for almost 8 months. The plan was for Alice to stay in her helmet until around 18 months of age. So with her being 16 months old now...we wondered how this would play out...whether she would need a 3rd helmet or not. See, when you first get a new helmet, they are somewhat large and need lots of adjusting to make them fit right...so in my opinion, you don't get alot of change in the beginning of each helmet...you notice the most improvement when they are snug, like Alice's is now...which is why Hanger was reluctant to order that 3rd helmet. Being as that we already owe Hanger right much money for the helmet she is in now, Dr Magge thought it would be silly to get a new costly helmet when she would only be in in for a month maybe. So....<br />
Dr Magge said she will stay in this helmet until she outgrows it!!!! Which could possibly be earlier than 18 months...although we really want her to make it to 18 months to get as much improvement as possible before the end of helmet therapy.<br />
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<tr><td class="tr-caption" style="text-align: center;">Playing after a long car ride home</td></tr>
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Dr Magge did tell us in the beginning that because Alice was on the older side when having the endoscopic surgery, that her results may not be as good as a younger baby. But we were willing to risk that...because we wanted this surgery for her. But Dr Magge seemed VERY pleased at how Alice looks and her results so far! We then starting discussing some pros and cons to both types treatment for Craniosynostosis (CVR and endoscopic) I told him my view point about how I see what endoscopic surgery does...and how I feel it stops Craniosynostosis in it's tracks...and stops any physical distortions. When the strip craniectomy is performed and that suture is released...the skull starts to grow as it should be. The nasal and mouth deviation that Alice had before the surgery, was noticeably improved within a short time. For Coronal babies...if you wait months for the larger CVR surgery, that is just more time for things to distort and worsen. Dr Magge did say that during CVR surgery he can correct the flatness that occurs on the forehead in Coronal babies but the nose deviation is something that cannot be corrected. Well... I am just fine with that!. Alice's forehead may be a little flat on one side for a little while but I am ok with that! If we avoided putting our sweet baby through a large reconstructive surgery of her skull, an ear to ear incision etc...and all she has is a flattened spot...so what?!? Although Endo babies continue to improve after helmet therapy and their brow is pushed out by sinuses. When her helmet is off, you can't even tell what she has been through. I couldn't be happier with our decision to FIGHT for this endoscopic surgery! So grateful for Dr Magge coming into out lives at the perfect time and so blessed to have our beautiful little Alice...she is my hero!<br />
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I also want to take time to thank a sweet friend of mine who recently hosted a fundraiser for Alice on Instagram to help us pay for her helmets. I can't thank you enough for your hard work and your sweet heart! (@auctionforAIC)<br />
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Below is a new awareness video I have been working VERY hard on to help other families and also awareness of Craniosynostosis and shed light on the endoscopic surgery option. It would mean the world to me if you would share this video with others...especially new mothers/fathers.<br />
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<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-31289817320639223632014-03-13T22:22:00.000-04:002014-03-14T11:17:09.303-04:00A Momma's Nerves<div class="separator" style="clear: both; text-align: center;">
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I couldn't sleep at all last night...I kept tossing and turning and WORRYING. Leading up to this appointment I was extremely nervous. Over the past few months there has been very minimal growth of Alice's head...which could be a sign of a problem like refusing of the left coronal suture. To add to my nerves...Alice's followup appointment had been moved due to a snow storm a couple weeks ago and was rescheduled at the hospital where Alice had surgery in downtown DC instead of the usual office we go to just outside of the city. As I tossed and turned last night I just kept thinking about her surgery and how scary it was for us...and returning to the hospital where she had the surgery just added to my uneasy feelings.<br />
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My husband, Alice and I took a day trip to DC...did a little sight seeing on the way in, some accidentally as we took wrong turns and ran into road work but we made it to the hospital with an hour to spare. Just enough time to grab lunch in the hospital cafeteria and take Alice in the hospital Atrium/lobby where I wished I could have taken her last time...but she was stuck in the hospital bed.<br />
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<tr><td class="tr-caption" style="text-align: center;">I knew she would love them!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">They added new balloons since we were there in July for her surgery</td></tr>
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So Dr Magge measured her head and took pictures. He asked about how she was doing developmentally and how we thought she looked. I told him about my concerns about Alice's eyes recently and that I had them checked. I have heard alot about babies with unicoronal (left or right coronal) having eye problems. He explained to me that most of those cases are babies that had CVR (reconstructive skull surgery). There are studies to support that babies that have the endoscopic surgery don't seem to be as affected since releasing the suture that is fused helps with the asymmetry and reduces the chances of eye problems. We told him we noticed very early on how quickly her nose and mouth asymmetry was corrected. He then asked us how we think her forehead/eyebrow looks. We told him that it without a doubt it has improved a great deal...but it was still flat looking. We knew going into this endoscopic surgery that her results may not be as good as a baby that had the procedure done at 3 months old but we were willing to risk the cosmetic aspect of it to avoid reconstructive skull surgery. He said he could feel that the bone was starting to fill back in where he did the craniectemy but that it wouldn't affect her progress. The plan is to keep Alice in her helmet until she is 18 months old, although he will followup and keep an eye on her and could possibly extend it depending on how's she is doing. As Alice continues growing...her brain will push her skull outward and continue to push her affected side outward. With time, her skull will not appear as flat and her brow bone will eventually come out, even though it is recessed now. There isn't a medical need to do further surgery on Alice...it would only be cosmetic at this point, unless something changes.We won't be considering another surgery unless Dr Magge thinks she NEEDS it. The reason her head has not been growing dramatically is just because she is in the lower percentile for growth...her head is in the 25th percentile. She has a small head but it is growing gradually just like the rest of her. We call her our little runt :)<br />
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My point to this post is not to only let my friends and family know how the appointment went but to also let those of you who have stumbled across this blog to know how happy we are that we chose endoscopic surgery for our child. There are so many posts I ran across when I did my research in the beginning that said babies who have the endoscopic surgery are more likely to have to have more surgery....well, this is not true in most cases. Endoscopic surgery literally stops Craniosynostosis in it's tracks...when your baby's affected suture is released during surgery, amazing things begin to happen. We saw almost instant results with Alice's facial asymmetry....and then the helmet started to do it's magic. Some people may look at the helmet as an inconvenience to them...but it's not to your baby! Your baby adapts amazingly well...and it becomes part of them....and IT WORKS! Parents adapt too...the helmet becomes the new normal after a few months. My husband and I always talk about how different she looks without it because we are so used to her with it on...we actually get nervous when it is off while we clean it. It definitely comes in handy for a baby learning to walk that falls constantly :) Please consider this option for your child if you are given the opportunity. It is truly amazing how far our sweet Alice has come!</div>
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Thank you so much to my friends and family and even complete strangers who sent positive vibes and prayers our way as this nervous Mommy awaited this appointment. So happy that Dr Magge helped to ease my fears...I feel so much better! One thing that will never change though...how much you worry about your baby after they have been diagnosed Craniosynostosis...that fear is always there... </div>
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<tr><td class="tr-caption" style="text-align: center;">Just 8 months into helmet therapy! She has improved so much!</td></tr>
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Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-39319692667056255822014-02-09T22:10:00.004-05:002014-02-10T12:56:12.714-05:00If you Believe in it, then Fight for itI have to vent...based on my experience.<br />
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It is unimaginable to me that some doctors don't look out for the best interest in their patients....why? I don't know...because it is so routine for them, because of money, or maybe some of them just don't genuinely care like we would like to hope. Well, I guess most doctors expect the parents to just take their word and go with whatever they say...but not this mom!<br />
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<tr><td class="tr-caption" style="text-align: center;">A little something I created to raise awareness. It's a picture of Alice's foot with a bracelet<br />
my older daughter made for her. I love this quote...it seemed very fitting.</td></tr>
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As a parent you put your trust into this doctor you are seeing and trust their judgement...but please don't take the word and opinion from the first opinion you get. That, to me, is the biggest mistake as a parent you could make.. Why jump into a surgery for your child based on one person's opinion? Why not get additional opinions? You owe it to your child to explore other opinions of qualified doctors who can treat your baby.You are your child's advocate, their voice. If I had taken the first doctor's opinion and not pushed for a second opinion..my child's treatment and outcome would have been DRAMATICALLY different.<br />
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You have to remember that some doctors look at CVR (the open surgery) as such a routine thing, it's no big deal to them...it's not their child! You would hope as a decent human being that they would look out for your child...and if your child wasn't able to get endoscopic surgery based on their typical endoscopic window, that they would say..." Hey I know a Dr _____ will do the endoscopic surgery past 3 months of age" ...but no, that is just not the case, as you would expect. You have to research and find that out for yourself.<br />
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My intentions from the start were to get my daughter the less invasive treatment she needed and not settling for the first opinion...I knew I would do whatever I could to avoid reconstructive skull surgery for my child by fighting for endoscopic. CVR may seem routine for some doctors, but not to the parents going through this. I started this blog and did the news story (<a href="http://www.youtube.com/watch?v=NKSUElWbzfM">http://www.youtube.com/watch?v=NKSUElWbzfM</a>) so that awareness would be raised about craniosynostosis...and so others would know that there are some doctors out there that offer endoscopic surgery up to 6 months of age...which I would have NEVER known if I had not researched it myself.<br />
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Parents...PLEASE get many opinions.You owe it to your child to get many opinions and go with the doctor that you feel is right in your heart...not the one that is closest or the one you first saw...don't take NO for an answer. You will run into road blocks, you will feel defeated...but I promise you, there will be such a huge reward for fighting for your child. I have never been more proud of myself than I was with how I handled Alice's journey. I knew what I wanted for my baby and I made it happen...no it wasn't easy but it was worth it. I am so grateful for all the people that were helpful along the way and for everyone's support.<br />
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<br />Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0tag:blogger.com,1999:blog-6682934060896474770.post-63132441515367251432014-01-27T23:15:00.000-05:002014-01-28T00:12:17.867-05:00Don't Worry, Be Happy<br />
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From the moment you hear that your child is being referred to a specialist, specifically a neurosurgeon, fear comes over you. The last thing you want as a parent is to see your child go through surgery or be in pain...and you naturally want to protect them from that...until your realize you can't. This birth defect is not something that you can bypass....surgery isn't an option for the majority cases of Craniosynostosis. Then once you finally accept your child has to have surgery then you have the anticipation of waiting for surgery day...even on that day I battled a mix of emotions. I just wanted to pick her up and leave..I didn't want her to have the surgery. I think that was the hardest part for me...accepting that this had to happen and I had to trust complete strangers with my child. After you get through the surgery and recovery you then live with that fear of more problems coming up. In our situation our daughter had endoscopic surgery for left coronal and now is in helmet therapy. I constantly inspect her head and examine her physical features fearing the worst...that another suture has fused or that she will need another surgery...it consumes me at times.<br />
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<tr><td class="tr-caption" style="text-align: center;">Alice's skull (left) before surgery compared to a normal skull of a newborn</td></tr>
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Last week Alice had a helmet adjustment appointment. I already had some concerns from two weeks prior but was hoping I would be relieved of my worries this time...but I wasn't . Alice's head has not had hardly any growth in 4 weeks time...which can sometimes be a big concern. I immediately went into panic mode thinking the worst. She could possibly need more surgery, my worst fear. I emailed Dr Magge as soon as I could and expressed my concerns. I also vented to a couple friends...one who had been through the same surgery with her son, and one who had been supportive through Alice's journey. They both tried to calm me down and were very sweet and reassuring. One friend said "Remember you have done everything you can do right now. Gosh forbid Cheryl she has to have a larger operation at some point (prayerfully that won't happen but if it were needed) you also have to remember you have helped delay it by having the less invasive one months ago. Had you waited till she was a year old to do the big surgery we can only just imagine how it would have effected her sweet face and possibly motor or cognitive abilities. Keep the faith, pray and ask God repeatedly to take away any fear that is creeping in" Her words definitely helped me realize that I have done everything I can for her...I fought hard for the less invasive endoscopic surgery and even traveled out of town so that she could have that surgery. I have no regrets on my decision for endoscopic surgery for my child. I feel like it "stopped Cranio in it's tracks" as my other friend said...and helped her in the long run, more surgery or not. I have done everything in my power to help her...it is out of my hands and in God's hands now. </div>
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<tr><td class="tr-caption" style="text-align: center;">Alice, one year ago</td></tr>
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Alice's first birthday is tomorrow...it blows my mind that it has been a year. When I reflect back on just how much she has been through in her short year of life, it makes me emotional. What a strong girl I have. When I brought her home from the hospital she was somewhat fussy at first...and for the first several weeks. For some reason I started singing her the "Don't Worry, Be Happy" song (from the late 80's, remember?) It seemed to soothe her so I continued to sing it to her over and over for the next few months. So, I am going to take my own advice and try not to worry and to be happy. Easier said than done...i think I will always worry about her...but hopefully we will get some reassurance when we followup with her neurosurgeon in a month. Please keep Alice in your prayers. Happy 1st Birthday to our sweet Alice!!!</div>
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<tr><td class="tr-caption" style="text-align: center;">Happy 1st Birthday sweet girl</td></tr>
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Cherylhttp://www.blogger.com/profile/04614386833879757688noreply@blogger.com0