tag:blogger.com,1999:blog-39119188949085938842024-03-05T03:34:14.367-08:00Overcoming Movement DisorderCristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.comBlogger846125tag:blogger.com,1999:blog-3911918894908593884.post-15564339298890254712016-01-01T09:07:00.004-08:002016-01-01T10:28:00.059-08:00Happy New Year from Bertrand!Bertrand enjoyed the fireworks for New Years Eve in Park City!
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We captured a little laughter (and hiccups) and his sister being sweet:<br />
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Happy New Year from Bertrand and the rest of the Might family!<br />
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We're all hoping that 2016 is a slower-paced (but no less momentous) than 2015!Matthttp://www.blogger.com/profile/05481739222422277274noreply@blogger.com0tag:blogger.com,1999:blog-3911918894908593884.post-49301988971904826372015-11-29T21:16:00.001-08:002015-11-29T21:16:24.540-08:00Happy thanksgiving with NGLY1 -- and Bertrand's home!Apologies for the delayed update!<br />
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Bertrand got out the hospital just in time for Thanksgiving, and he's recovering rapidly in his natural habitat. Azithromycin worked!<br />
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Unfortunately, he developed an abrasion in his cornea from the forced ventilation, and that's requiring a lot of around the clock care to recover, but that too seems to be mending rapidly with Cristina's attentiveness.<br />
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We're hoping Bertrand will be well enough for school later this week.<br />
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We had a wonderful Thanksgiving with fellow NGLY1 family the Esteniks, who flew from Missouri to join us in Salt Lake and Park City!<br />
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It was one big happy family!<br />
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We're still pulling pictures off the cameras, but here's a few quick ones from last week:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYe5n3MDozTzJLN4J4fcUT-yDpZMG3zy4OA66Asd918LyRySActCvF_J3wh6x9jiE-bEKCaftTrpTcg7lw8dUMlP21ZTExD5VF1fBw7zj9xYqn7RhKDFNy3z6utwxEO-gkpuVf_TzGSOE/s1600/2015-11-28+16.34.47.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYe5n3MDozTzJLN4J4fcUT-yDpZMG3zy4OA66Asd918LyRySActCvF_J3wh6x9jiE-bEKCaftTrpTcg7lw8dUMlP21ZTExD5VF1fBw7zj9xYqn7RhKDFNy3z6utwxEO-gkpuVf_TzGSOE/s400/2015-11-28+16.34.47.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Smiles all around -- and some overalls too.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2_DzrYPxWTRSkzwSmCYnrCbiJYcJciUAui87FaFaIXWPswF2RgQEzLBmTuJZib8WqlrmjmWTohrVByvbmjqs0ZtgqxAVEf11lX8zlkZowr6PnqHyoPtbhn8LpaUgb7FKJ4aETSFPR6_s/s1600/2015-11-28+16.37.05.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2_DzrYPxWTRSkzwSmCYnrCbiJYcJciUAui87FaFaIXWPswF2RgQEzLBmTuJZib8WqlrmjmWTohrVByvbmjqs0ZtgqxAVEf11lX8zlkZowr6PnqHyoPtbhn8LpaUgb7FKJ4aETSFPR6_s/s400/2015-11-28+16.37.05.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Benji and Bertrand hamming it up.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisvs8ToNlSu8gKp79yXiSjHAfV-8v4Z0zu1tQzLsp6TIMvI7fjLUanBqRM7PXGYgOZSlZp1oyBFG8NDMoUrT9Kk-cr254esf4ciDANQ8aXujrRZqVm3GnKokrZ_0Av339_V7dYysDnWuM/s1600/2015-11-27+18.10.12.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisvs8ToNlSu8gKp79yXiSjHAfV-8v4Z0zu1tQzLsp6TIMvI7fjLUanBqRM7PXGYgOZSlZp1oyBFG8NDMoUrT9Kk-cr254esf4ciDANQ8aXujrRZqVm3GnKokrZ_0Av339_V7dYysDnWuM/s640/2015-11-27+18.10.12.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aunt Eileen made special shirts that spelled out NGLY1 - "We can solve it together!"</td></tr>
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<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/AVvXsEiPYvEe_HRg0aFYq4bc-nPbgcOo0agM1XEpY4r9mCVuHubN2dWJ3VM73gef2yZB3OadpfaIHHIE8-rxQXDmPWRBgTsfwKtwaXDAG6sv-hT-wVh-hYlStZ2QfID_rFw0R66OgPTZ69GklaE/s1600/2015-11-25+11.15.13.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPYvEe_HRg0aFYq4bc-nPbgcOo0agM1XEpY4r9mCVuHubN2dWJ3VM73gef2yZB3OadpfaIHHIE8-rxQXDmPWRBgTsfwKtwaXDAG6sv-hT-wVh-hYlStZ2QfID_rFw0R66OgPTZ69GklaE/s400/2015-11-25+11.15.13.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Uncle Carl has a real talent for making NGLY1 kids smile, laugh and reach their potential.</td></tr>
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<tr><td style="text-align: center;"><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfBdz4rlgukbXWs_sm2fGfXaVaan9G4290Zxoy4V-uqgqDHvi_dVLZO_0z_imFsYUf2goafOpqN3VkQVbNEnlApMLbDgfLQSg1ixfHo8StS6fIteIQngmRZ2m7PFu9dYs5qluhrREjykk/s1600/2015-11-27+18.18.57.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfBdz4rlgukbXWs_sm2fGfXaVaan9G4290Zxoy4V-uqgqDHvi_dVLZO_0z_imFsYUf2goafOpqN3VkQVbNEnlApMLbDgfLQSg1ixfHo8StS6fIteIQngmRZ2m7PFu9dYs5qluhrREjykk/s400/2015-11-27+18.18.57.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">V and W build a secret weapon at the science museum.</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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Matthttp://www.blogger.com/profile/05481739222422277274noreply@blogger.com4tag:blogger.com,1999:blog-3911918894908593884.post-86115292013756418582015-11-21T06:32:00.001-08:002015-11-21T06:32:55.037-08:00Hospital update: Morning of Day 6: Good signs?Bertrand had a rapid drop in O2 on Day 4, which sent him to the ICU.<br />
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It took 35 liters of oxygen to stabilize his O2. ("A leafblower up his nose" is how I described it.)<br />
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Once stable, they switched him to a far gentler cpap machine and inserted an NJ feeding tube.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxwkqp7kZdKpQeIOcg4GWf7XHurhOvk6ulwl8o5SyERwGbwGv0rIVtufISBigswc_UQoWI9dCk9D25JcP86bWjqKepx-49UA0U5lT-Wpafuo3ecR3EGN63ya7s-jNdJxl-9Bivu8iHKkg/s1600/2015-11-20+16.28.24.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxwkqp7kZdKpQeIOcg4GWf7XHurhOvk6ulwl8o5SyERwGbwGv0rIVtufISBigswc_UQoWI9dCk9D25JcP86bWjqKepx-49UA0U5lT-Wpafuo3ecR3EGN63ya7s-jNdJxl-9Bivu8iHKkg/s640/2015-11-20+16.28.24.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gentler.</td></tr>
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After some firm parental advocacy by Cristina, the medical team put Bertrand on azithromycin, something we'd requested since the start of the admission.<br />
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While we can't find indications of mycoplasma bacteria this time, azithromycin is also anti-inflammatory, and it has been what's pulled him out of the hospital every other time a lung infection has overwhelmed him.<br />
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Since nothing else has been working, it seems worth trying once more -- especially since the side effects are so manageable.<br />
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Except for a couple intrusions by the medical team, Bertrand slept straight through the night.<br />
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Today, I woke up to him giggling at the nurse around 5 AM.<br />
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He smiled at me, and then tried to rip his cpap mask off.<br />
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Seeing Bertrand alert and showing emotion means a lot.<br />
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While still on support, his O2, heart rate and respiration look much, much better today.<br />
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I'm keeping my fingers crossed that we can start gradually reducing his external support today or tomorrow.<br />
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This kid wants to come home.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgogCZwHlZQhT4sIomOu-BMc4yg5Up2tCymm2-MkFbUqyFiF6NjBLUVO72fqoZAqZiaBHRk3TA9HF6vfc3CtQ0OfgoE35GywcW-n3zDCMMe60A21-fUoLFP6XbEOTRZhyphenhyphenrE8p504GIYAzI/s1600/2015-11-18+17.06.07.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgogCZwHlZQhT4sIomOu-BMc4yg5Up2tCymm2-MkFbUqyFiF6NjBLUVO72fqoZAqZiaBHRk3TA9HF6vfc3CtQ0OfgoE35GywcW-n3zDCMMe60A21-fUoLFP6XbEOTRZhyphenhyphenrE8p504GIYAzI/s640/2015-11-18+17.06.07.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The view from the hospital.</td></tr>
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<br />Matthttp://www.blogger.com/profile/05481739222422277274noreply@blogger.com4tag:blogger.com,1999:blog-3911918894908593884.post-43933736094899627272015-11-18T19:34:00.001-08:002015-11-18T19:34:31.623-08:00Hospital update: Day 3Bertrand is on Day 3 of hospitalization with a severe respiratory infection.<br />
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It's become very clear having met other NGLY1 families that respiratory infections that spiral quickly are a major challenge for many of these patients. Bertrand seems to end up in the hospital about every 18 months on average with an episode like this. (Living at altitude probably doesn't help either.)<br />
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And, even though we could almost anticipate this would happen at some point and even though we've been through this before, this hospitalization has still been harder than most.<br />
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For starters, everyone is sick.<br />
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I'm sick. Cristina is sick. Victoria is sick. Winston is sick. Aury is sick. My mom is sick.<br />
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Even the dog is sick.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTS5O0pb3IpxQoS8qG7UjY5djWjPnf7BrunUZQvdS7gc_qA1t4SmojGpAxs8F4hNovQ31rttSi-kzoeDGUmgc55rOhNpvjI_MSL3n4kZRSGABwU8eAmG_wqfveq9jxpS_e4LFlIVMIBbg/s1600/meepish-penny.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTS5O0pb3IpxQoS8qG7UjY5djWjPnf7BrunUZQvdS7gc_qA1t4SmojGpAxs8F4hNovQ31rttSi-kzoeDGUmgc55rOhNpvjI_MSL3n4kZRSGABwU8eAmG_wqfveq9jxpS_e4LFlIVMIBbg/s400/meepish-penny.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Penny's had enough of this.</i></td></tr>
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I did hospital duty the first night and ended up getting much worse.<br />
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I went to Instacare to beg (unsuccessfully) for antibiotics:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYRnTfKsQOp6MoaE7BJSbFzU9RzA3Dn3y2GEb1YTJ-is06SwGw1i5uLB98PWhxwG6tWuHG9m7hzcn88nRNuJGFXWbNbrHGi9zZOdd3NbcKRumGloDpLD8OqfkRUKOKkx2b1JF5KciuNtY/s1600/2015-11-17+18.20.01.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYRnTfKsQOp6MoaE7BJSbFzU9RzA3Dn3y2GEb1YTJ-is06SwGw1i5uLB98PWhxwG6tWuHG9m7hzcn88nRNuJGFXWbNbrHGi9zZOdd3NbcKRumGloDpLD8OqfkRUKOKkx2b1JF5KciuNtY/s400/2015-11-17+18.20.01.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I've never been more annoyed to find out I didn't have <i>strep</i>.</td></tr>
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My mom did hospital duty last night so Cristina and I could get some rest.<br />
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To make things crazier, there are at least two pathogens. One is <i>strep</i>. One is a virus. Each of us has one or the other -- except Bertrand, whom seems to have both, plus pneumonia.<br />
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Normally, when Bertrand gets hospitalized, we can stabilize him in 24 hours, and then he starts to improve.<br />
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While we've stabilized Bertrand once again, he hasn't really started to improve at all.<br />
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His O2 hasn't budged much beyond the low 90s, and his breathing is just as labored despite regular suction, albuterol treatments, cough machines, percussion vests and manual pulmonary therapies.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgofETvVQNEiEUIgwpK7CcGNORCSP6cGjsPPrSmQeBv5fPU5dcW29QNy9X5IxbdX0fiJqgKGAYv67S-OGqulMpKeeoe2i9GaSOUgid9Q74FHdtyyJdin0X5SqsmnuiNezl0QnXVrnL_KQo/s1600/2015-11-18+16.59.41.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgofETvVQNEiEUIgwpK7CcGNORCSP6cGjsPPrSmQeBv5fPU5dcW29QNy9X5IxbdX0fiJqgKGAYv67S-OGqulMpKeeoe2i9GaSOUgid9Q74FHdtyyJdin0X5SqsmnuiNezl0QnXVrnL_KQo/s320/2015-11-18+16.59.41.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hooked up to lots of lung technology.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHzfP6t5u9M0K9YK4UDs3ZZzLOxHoDpFe4unK4w7ar1W5Mkb-oYgYydrpGp4gpwu0qGMKnj-2lgpJdXXh4KFj-DJFMiu-ZcA7HZO4xrT7eO8oc8CQg3vGon7n0tOMJWn3JX4Yk8N-yvUs/s1600/2015-11-18+17.10.51.mov" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHzfP6t5u9M0K9YK4UDs3ZZzLOxHoDpFe4unK4w7ar1W5Mkb-oYgYydrpGp4gpwu0qGMKnj-2lgpJdXXh4KFj-DJFMiu-ZcA7HZO4xrT7eO8oc8CQg3vGon7n0tOMJWn3JX4Yk8N-yvUs/s320/2015-11-18+17.10.51.mov" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It's like wearing a lawnmower.</td></tr>
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The attending physician believes Bertrand has asthma, in part because he responds well to anti-inflammatories during these episodes. <br />
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Complicating matters, he's having clinical seizures again. While Bertrand's EEG remains abnormal, his clinical seizures had largely vanished for the past year.<br />
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And then yesterday, Bertrand had the worst episode we've seen in years.<br />
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Luckily, the medical team was rounding and able to witness it as it unfolded.<br />
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After witnessing for 5 minutes, they promptly ordered rescue medication (Atavan), which stopped the seizure instantly. The seizure itself was close to 20 minutes by the time it stopped.<br />
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Today, Bertrand just hasn't been himself. Normally, Bertrand is alert and cheerful most days. Since getting sick, he's been largely out of it, and I think that the sideways progress is agonizing for all -- and Bertrand especially so.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2VXwfqmN9oUmGzrnoB9_-lSgK6qosHCWyjdCzLdG0-B0kU1t7ChIMDnybuugPnUo1JcjZS70J01IHXvIJXeZH8RUd4Xjazyy5HM-fd8mINUI7o2mmqSfzCTPuhCkD9FW7ZGyNAvX1MPE/s1600/2015-11-18+16.54.43.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2VXwfqmN9oUmGzrnoB9_-lSgK6qosHCWyjdCzLdG0-B0kU1t7ChIMDnybuugPnUo1JcjZS70J01IHXvIJXeZH8RUd4Xjazyy5HM-fd8mINUI7o2mmqSfzCTPuhCkD9FW7ZGyNAvX1MPE/s640/2015-11-18+16.54.43.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Winston is done with this too.</i></td></tr>
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On the other hand, we've been encouraged by the many people wishing Bertrand well from around the country and the world. And especially by Bertrand's local fan club, including visits from Aunt Gina and Aunt Karen.<br />
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Thank you to all of you for your love, thoughts and support!<br />
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<br />Matthttp://www.blogger.com/profile/05481739222422277274noreply@blogger.com5tag:blogger.com,1999:blog-3911918894908593884.post-62557359631278478262015-09-16T08:31:00.001-07:002015-09-16T08:31:21.873-07:00NIH-backed Undiagnosed Diseases Network launches!The NIH-backed Undiagnosed Diseases Network (UDN) is launching today!<br />
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If you or someone you know has been on a challenging diagnostic odyssey, it's time to apply to the UDN:<br />
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<a href="http://undiagnosed.hms.harvard.edu/apply">http://undiagnosed.hms.harvard.edu/apply</a><br />
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The UDN is a nationwide extension of the NIH's highly successful Undiagnosed Diseases Program (UDP) to clinical and research sites around the country.<br />
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I've been working with this group of clinicians and researchers for the past year, and I can tell you that it's immensely talented and caring group. They really do want to make a difference in the lives of patients.<br />
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Please spread the word!Matthttp://www.blogger.com/profile/05481739222422277274noreply@blogger.com0tag:blogger.com,1999:blog-3911918894908593884.post-13583388056565470482015-09-13T14:47:00.001-07:002015-09-13T14:48:28.519-07:00(Almost) Wordless SundayLife continues to move at a pace faster than we can process.<br />
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Rest assured that despite our silence, good things are happening. (In fact, too many good things might be the best way to describe it.)<br />
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Given the speed with which we're moving, it's important take a moment from time to time to appreciate the "little things."<br />
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I've been on the road almost continuously for many months now, but I've found myself watching this video from the past month over and over, drawing from it a kind of strength that only flows from child to parent:<br />
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I hope you enjoy:<br />
<iframe width="560" height="315" src="https://www.youtube.com/embed/g5sKFZwjuGA" frameborder="0" allowfullscreen></iframe>
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<br />Matthttp://www.blogger.com/profile/05481739222422277274noreply@blogger.com5tag:blogger.com,1999:blog-3911918894908593884.post-38023130767872445572015-08-12T11:33:00.001-07:002015-08-12T11:33:46.129-07:00Wordless Wednesday<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjl6vg4B0QmzsIsXBcyI8_JqwgItzYESrrFONPEKmtq2nYKgr3A38vbX12I90UH9Vu9LOkFuayda3WWRzmz823-zC_OEeS3HyUsL5pawJ5A0MWfkFvmUQqyLi7rHf0L3YL_aTv19BcuLXI/s640/blogger-image--1410952437.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrhcYUvHkdZsm7xpJwVdPMGfrNN3M2u9tI76mAW0ROiY1ymD30qcRREO35jbwghQaKGKd4b8ygVYseMKyjyedLxKc9SXnZYf9QY0ZSrOQnUzCcnS4GudpPu4Wlj6UKEqvewoEq6wmnzfQ/s640/blogger-image-1065635329.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrhcYUvHkdZsm7xpJwVdPMGfrNN3M2u9tI76mAW0ROiY1ymD30qcRREO35jbwghQaKGKd4b8ygVYseMKyjyedLxKc9SXnZYf9QY0ZSrOQnUzCcnS4GudpPu4Wlj6UKEqvewoEq6wmnzfQ/s640/blogger-image-1065635329.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjl6vg4B0QmzsIsXBcyI8_JqwgItzYESrrFONPEKmtq2nYKgr3A38vbX12I90UH9Vu9LOkFuayda3WWRzmz823-zC_OEeS3HyUsL5pawJ5A0MWfkFvmUQqyLi7rHf0L3YL_aTv19BcuLXI/s640/blogger-image--1410952437.jpg"></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Bertrand is back in action with his intensive therapy!</div>Matthttp://www.blogger.com/profile/05481739222422277274noreply@blogger.com1tag:blogger.com,1999:blog-3911918894908593884.post-30495994483884474782015-06-04T11:57:00.001-07:002015-06-04T12:46:54.389-07:00Back at NIHBertrand and Winston have been hanging out at NIH for year 2 of the CDG protocol for NGLY1 this week. <div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4SQPIXcbpr5ftgCL7Q_23DE6HKJSwI-MjOpTA9KY6-RDNaVmVV_FdW6uJavvU_8-OBzXcztjzkfNCETX4hv1EgZOkZrlgpnjxHDp0cMGjCDVGQ9_e5Anw5c3kD8zWge0i0VG909S6izM/s640/blogger-image--161374660.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4SQPIXcbpr5ftgCL7Q_23DE6HKJSwI-MjOpTA9KY6-RDNaVmVV_FdW6uJavvU_8-OBzXcztjzkfNCETX4hv1EgZOkZrlgpnjxHDp0cMGjCDVGQ9_e5Anw5c3kD8zWge0i0VG909S6izM/s640/blogger-image--161374660.jpg"></a></div><div><br></div>Here's a quick pic to show the two brothers in action. </div><div><br></div><div>2015 has been a non-stop collection of sprints for the entire Might family. </div><div><br></div><div>We're hoping things will even out sometime this summer!</div><div><div><br></div><div><br></div></div>Matthttp://www.blogger.com/profile/05481739222422277274noreply@blogger.com1tag:blogger.com,1999:blog-3911918894908593884.post-69971511898195808722015-04-20T06:19:00.000-07:002015-04-20T06:20:11.341-07:00Boston for Bertrand<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/AVvXsEjIks8xr7tK9sIhdm2pp2Ez0axh5zc8IlsKHde8ZKh7Hl7w6gmOpVCQysluO1gdVlxCCUOTHIWbMMrZY7O7-xwwhwnpGkN42XbnqOO5xx-z6yJwXuyTorva6UTLKAV8pZqpYRLj45ty8lA/s1600/unnamed.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIks8xr7tK9sIhdm2pp2Ez0axh5zc8IlsKHde8ZKh7Hl7w6gmOpVCQysluO1gdVlxCCUOTHIWbMMrZY7O7-xwwhwnpGkN42XbnqOO5xx-z6yJwXuyTorva6UTLKAV8pZqpYRLj45ty8lA/s1600/unnamed.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bertrand's runner, Pam (#28444) and her husband yesterday.</td></tr>
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Today, Pamela Lynch (Bib #28444) is running the <a href="http://running4rare.org/2015/04/18/boston-for-bertrand/">Boston Marathon for our sweet Bertrand</a>. <br />
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In his name, she is raising funds for the NIH's Undiagnosed Diseases Network (UDN). <br />
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You can make a tax deductible donation through NORD to support the UDN and give undiagnosed families answers and hope <a href="http://www.firstgiving.com/fundraiser/Pamelaelynch/2015-running-for-rare-diseases-team">HERE</a>.<br />
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Pam is a regional manager for Genzyme, an amazing wife, mother to 2 kids, athlete, and an advocate for rare disease diagnosis, research and treatment. <br />
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Bertrand was supposed to be cheering her on today at one of the checkpoints in Boston.<br />
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Instead we will be FaceTime-ing with her from home as Bertrand's cold progressed to pneumonia, and we were unable to make our Friday flight. <br />
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(I'll update on this later. He is feeling much better thanks to antibiotics but not 100%.)<br />
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We are honored to have her and the Running 4 Rare Team championing Bertrand, NGLY1 and the rare disease community.<br />
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As we well know, a diagnosis is the first step toward understanding, treatment and a cure.<br />
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The groundbreaking work the NIH's UDN is doing deserves all the support we can muster. <br />
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All families deserve answers. They deserve hope.<br />
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Thank you, Pam! Your Running 4 Rare is making a difference! We love you!Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com1tag:blogger.com,1999:blog-3911918894908593884.post-65262938201477465422015-04-07T13:14:00.004-07:002015-04-07T13:14:52.395-07:00Dubby's 9th Month<div class="separator" style="clear: both; text-align: center;">
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Just a quick post to share our adorable 9 month-old Danger Dubby.</div>
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His favorite song is "If you're happy and you know it." He requests it by clapping his hands.</div>
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Even sick (like he was in these photos), he is always happy!</div>
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He waves, blows kisses, and can point to body parts (eyes, nose, mouth, etc).</div>
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He is almost walking. Eep! He is fast becoming a toddler. *sniff sniff*</div>
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Everyone who meets him, loves him. His parents most of all. :)</div>
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<i>All photos by Staci Cummings of Sweet Envy Photography.</i></div>
Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com3tag:blogger.com,1999:blog-3911918894908593884.post-67139326335608913422015-02-09T20:56:00.001-08:002015-02-10T04:56:53.746-08:00HB 94: Utah "Right To Try" Act<center>
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HB 94 is Utah's "Right to Try" Act. Right to Try allows terminally ill patients access to investigational medications and devices that have completed FDA phase one safety testing.</div>
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We are extremely grateful to Jonathan Johnson, Rep. Gage Froerer, the Goldwater Institute, and fellow rare advocates <a href="http://updatesontalan.blogspot.com/">Jen and Stan Summers</a> for helping to get this important piece of legislation to the floor. </div>
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Many thanks to Jen (<a href="http://updatesontalan.blogspot.com/">Talan's mom</a>) for the photos!</div>
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Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com0tag:blogger.com,1999:blog-3911918894908593884.post-49682407881806422722015-02-05T23:32:00.000-08:002015-02-08T23:38:42.472-08:00Obama<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwOZBL5Rj_PYAC20tKmKXIscZf6dVSNLBLSCVFZ1ZBd_kC0C1Ym1hm9YNfbl5XpYK_YskavFXgfXFJQTczmll6hvvdG8m2HcES7l_t8s0RM6n3JBrflD9HTmwlRZLUwfNtp1CWY5rF7ig/s1600/GgGmZHcP.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwOZBL5Rj_PYAC20tKmKXIscZf6dVSNLBLSCVFZ1ZBd_kC0C1Ym1hm9YNfbl5XpYK_YskavFXgfXFJQTczmll6hvvdG8m2HcES7l_t8s0RM6n3JBrflD9HTmwlRZLUwfNtp1CWY5rF7ig/s1600/GgGmZHcP.png" height="400" width="400" /></a></div>
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I fell off the blog post wagon because <a href="http://www.ngly1.org/2015/02/president-obama-congratulates-ngly1.html">THIS</a> happened last week.</div>
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Kids are sick, Matt is out-of-town, but life is busy and beautiful.</div>
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PS-If you live in Utah, you better register for <a href="http://utahrare.org/">Rare Disease Day</a>!</div>
Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com0tag:blogger.com,1999:blog-3911918894908593884.post-26843104564236138562015-01-24T20:48:00.000-08:002015-02-09T20:57:04.695-08:00Sundance Stephanie<center>
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We were lucky enough to meet Stephanie D Fischer this week for Sundance!</div>
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We call her the "kid whisperer" because she charmed all 3 of the kiddos--the adults too. :)</div>
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Next time, Steph, you should just stay with us!</div>
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State of the Dubby Update:</div>
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Baby WJ turned 7 months on Monday. He can finally sign "more" and "milk".</center>
Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com0tag:blogger.com,1999:blog-3911918894908593884.post-36704469585720989132015-01-16T22:58:00.000-08:002015-01-17T07:36:10.642-08:00Winston's 6th Month<div class="separator" style="clear: both; text-align: center;">
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Oh, sweet Winston. Darling "Dubby". My Little Prince.</div>
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I can't believe it's been over half a year since you entered our lives.</div>
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You are a joy in every dimension!</div>
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Strangers call you the "perfect Gerber baby"--and you really are.</div>
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Even teething (you have two!) or fighting a small cold, you are always content and smiling.</div>
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And you are always, ALWAYS on the move.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0FOCiO_yPZwWX-rYkYzalaM1AtsZ6pKs6uS8HJ2NpcIo0t5wdPOhzwOcmSlYEZEtdaHr2J-H5t6VF8KLuJNrVE5uk09hPDcrBCYF9JZS_aACxmcwn9FArtnLRLulD8UVwkVFGgHQNkdo/s640/blogger-image--1710716610.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0FOCiO_yPZwWX-rYkYzalaM1AtsZ6pKs6uS8HJ2NpcIo0t5wdPOhzwOcmSlYEZEtdaHr2J-H5t6VF8KLuJNrVE5uk09hPDcrBCYF9JZS_aACxmcwn9FArtnLRLulD8UVwkVFGgHQNkdo/s640/blogger-image--1710716610.jpg" /></a></div>
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Last month you started crawling. </div>
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This month you started climbing stairs and cruising.</div>
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You are feeding yourself with a *gasp* pincer grasp! </div>
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(Sweet potato puffs are your favorite.)</div>
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What will next month bring? Every day you change so much!</div>
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Your father and I marvel at everything you do and the little person you are.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVJuCVQuAU6cJqnn7AnaIbiUwF4-T62AF9uq7GkZdNMbj_Exa8i3spMLLTCw5zM-KO1nTrYYOQB4rU7pIJNSAWZh-0cAR9ga-XtVRgowi5SscIXw_pWH0OsPJM_083dSUrqr1hw0QSTVM/s640/blogger-image-365642405.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVJuCVQuAU6cJqnn7AnaIbiUwF4-T62AF9uq7GkZdNMbj_Exa8i3spMLLTCw5zM-KO1nTrYYOQB4rU7pIJNSAWZh-0cAR9ga-XtVRgowi5SscIXw_pWH0OsPJM_083dSUrqr1hw0QSTVM/s640/blogger-image-365642405.jpg" /></a></div>
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We take nothing for granted. </div>
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You're a gift.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMSc7p8GeLkkgGCS5yV0XPD_bTktbT7bDFiDTW4XM1Q-89xbCY8juWISoDFi-jwNiknGa3XbuwdOwzIqICL3Tox09_RqESLHQ_E7cZ0qrIZitt8KoAVDPQCH_vweFEbhjL1Ob6tVCXjF8/s640/blogger-image-1728734466.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMSc7p8GeLkkgGCS5yV0XPD_bTktbT7bDFiDTW4XM1Q-89xbCY8juWISoDFi-jwNiknGa3XbuwdOwzIqICL3Tox09_RqESLHQ_E7cZ0qrIZitt8KoAVDPQCH_vweFEbhjL1Ob6tVCXjF8/s640/blogger-image-1728734466.jpg" /></a></div>
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Eventually, Victoria will come around to realizing that too. ;)</div>
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While I wish I had taken more photos (like I did with Bertrand and even Victoria), I don't regret spending that time snuggling you instead. :)</div>
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Mama loves you more than there are stars in the sky, little angel.</div>
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xoxo</div>
Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com4tag:blogger.com,1999:blog-3911918894908593884.post-81602121827066455642015-01-08T21:32:00.000-08:002015-01-08T21:32:53.806-08:00The only thing sexier than a minivan...<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOw9gfkPDspaRPfDzuOLHbD2Ke9qT-6IdOuk2eHMk1FL2JWupr58po8d3Ow4Oouh5tmYtNfDQ5DB-zdlaCZsvDpxuYh9KXraboqmppEe5NSIla7ViE3VOA1CAoMXwFP2odT70eFo1SKrg/s1600/DSCN0517+-+Copy.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOw9gfkPDspaRPfDzuOLHbD2Ke9qT-6IdOuk2eHMk1FL2JWupr58po8d3Ow4Oouh5tmYtNfDQ5DB-zdlaCZsvDpxuYh9KXraboqmppEe5NSIla7ViE3VOA1CAoMXwFP2odT70eFo1SKrg/s1600/DSCN0517+-+Copy.JPG" height="480" width="640" /></a></div>
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Our new mobility van: a 2015 Toyota Sienna with VMI in-floor, slide-out ramp conversion.</div>
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Bertrand is convinced that all the girls will love it. ;)</div>
Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com9tag:blogger.com,1999:blog-3911918894908593884.post-18073675182118340042015-01-01T20:01:00.000-08:002015-01-01T20:01:45.903-08:00Happy New Year 2015!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM3c9hB7Lux3veL3hwkwjE9tPelfM6nxetNilLrLcHQkb6dXxsNq5_os5yusFIAhbN1zrQkJM0sMtYs9AL2ikRS2uLlkCs8h5HSDadMCEb5iSlwuH4hNgrbUW9qcMRsrJbR8CsgloPCM0/s1600/F_075.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM3c9hB7Lux3veL3hwkwjE9tPelfM6nxetNilLrLcHQkb6dXxsNq5_os5yusFIAhbN1zrQkJM0sMtYs9AL2ikRS2uLlkCs8h5HSDadMCEb5iSlwuH4hNgrbUW9qcMRsrJbR8CsgloPCM0/s1600/F_075.jpg" height="426" width="640" /></a></div>
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<span style="font-size: large;">We wish everyone a joyful new year!</span></div>
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<span style="font-size: x-small;">Resolution #1: Blog at least once a week. Baby steps!</span></div>
Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com4tag:blogger.com,1999:blog-3911918894908593884.post-31835392505640842492014-12-17T08:10:00.000-08:002014-12-17T08:10:35.173-08:00Bertrand turns 7!Things have been a little hectic with the arrival of number three -- so hectic in fact -- that it's taken us a week to post on Bertrand's amazing 7th birthday!<br />
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Courtesy of the amazing Szajnuk family, Bertrand spent his 7th birthday meeting the Utah Jazz players!<br />
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We arrived for the pregame warm-up, and Bertrand got to sit on the court:<br />
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The players came over one by one to wish him Happy Birthday, sign his basketball and take a photo with him!<br />
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The Jazz then went on to beat the Spurs in honor of Bertrand's 7th birthday!</div>
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Bertrand and Victoria had a total blast cheering on the team to victory!</div>
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What an amazing 7th birthday!!!<br />
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<br />Matthttp://www.blogger.com/profile/05481739222422277274noreply@blogger.com0tag:blogger.com,1999:blog-3911918894908593884.post-6848329696897582202014-11-24T20:52:00.001-08:002014-11-24T21:03:23.218-08:00A Smile Worth Sharing - 2014<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9_4yuQL226x95EWKuWXEdPSPGIRpUiX4nzPmDeKUnNQmQmm-Ng0NkLmuMBKO5OeCakT7g7IkvB8G9t9OaZIxTzdDN2gzm5wHtjyxAc2oua5fP4LD4_Vob8dL8d-QmLZbAqqyLlpuFC8A/s1600/ch1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9_4yuQL226x95EWKuWXEdPSPGIRpUiX4nzPmDeKUnNQmQmm-Ng0NkLmuMBKO5OeCakT7g7IkvB8G9t9OaZIxTzdDN2gzm5wHtjyxAc2oua5fP4LD4_Vob8dL8d-QmLZbAqqyLlpuFC8A/s1600/ch1.jpg" height="640" width="512" /></a></div>
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Bertrand's photo for first grade, age 6, 2014-15 school year. The following are school photos from <a href="http://www.overcomingmovementdisorder.com/2011/11/worth-sharing.html">2011-12</a> (preschool age 3), <a href="http://www.overcomingmovementdisorder.com/2012/10/a-smile-worth-sharing-2012-edition.html">2012-13</a> (preschool age 4), <a href="http://www.overcomingmovementdisorder.com/2013/10/a-smile-worth-sharing-2013.html">2013-14</a> (kindergarten age 5), and proof that Bertrand is an increasingly happy guy!<br />
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I still want to eat these sweet little cheeks!</div>
Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com4tag:blogger.com,1999:blog-3911918894908593884.post-82950432768964922442014-11-13T20:58:00.000-08:002014-11-13T20:58:20.674-08:00Face of Cannabis<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/AVvXsEgjbcybeI2yrnPTKlDddinNrP6UidKq0LI5SjT28RxGceAYJKWpWEnAxbTb4uqD89DVkiIYTb-Jj3zn-_gnxiEpiQFs2JzPJ38dixuHHGv9eM-LswnjWoEKbU3WTNgotwG8rVxcXBEFW5w/s1600/BertrandFaceOfCannabis.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjbcybeI2yrnPTKlDddinNrP6UidKq0LI5SjT28RxGceAYJKWpWEnAxbTb4uqD89DVkiIYTb-Jj3zn-_gnxiEpiQFs2JzPJ38dixuHHGv9eM-LswnjWoEKbU3WTNgotwG8rVxcXBEFW5w/s640/BertrandFaceOfCannabis.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Can you spot baby Winston? :) (Photo credit <a href="http://www.sltrib.com/news/1817216-155/cannabis-oil-lake-montanez-salt-epilepsy">The Salt Lake Tribune</a>.)</td></tr>
</tbody></table>
Just a quick post to let you know we are alive but busy! Yesterday we hosted an event for the <a href="http://faceofcannabis.wordpress.com/">"Face of Cannabis" Project</a> on behalf of the <a href="http://www.epilepsyut.org/">Epilepsy Association of Utah</a> and <a href="http://hope4childrenwithepilepsy.com/">Hope for Children with Epilepsy</a> at the wonderful <a href="http://holodeckslc.com/">Holodeck</a>. It was a joy and honor to work with the talented Nichole Montanez and the 22 Utah families who came out to share their stories and support. Together, we will keep fighting to make treatments available to all kids who need them!<br />
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Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com2tag:blogger.com,1999:blog-3911918894908593884.post-64041556500637299702014-09-09T10:20:00.003-07:002014-09-09T10:21:49.424-07:003rd Annual RARE Patient Advocacy Summit<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguBBl87hzTUUs9B1R9NxBdD2N8exH6W14GYy38-SN3X_wHWgQ1YT6tS26XAl9Qd5YL03bsrhz-E8mI10mbaTg2RuyB7ih_6gW1KN6aF2E_n1H88pan96VuHC3hn9n_JpwAml9B2a63_hM/s1600/2014PatientAdvocacySummit_2014.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguBBl87hzTUUs9B1R9NxBdD2N8exH6W14GYy38-SN3X_wHWgQ1YT6tS26XAl9Qd5YL03bsrhz-E8mI10mbaTg2RuyB7ih_6gW1KN6aF2E_n1H88pan96VuHC3hn9n_JpwAml9B2a63_hM/s1600/2014PatientAdvocacySummit_2014.jpg" height="564" width="640" /></a></div>
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<span class="s1" style="border: 0px none; line-height: 1.6em; margin: 0px; padding: 0px;">The Global Genes Project’s <a href="http://cts.vresp.com/c/?GlobalGenes/36278db7ed/d7f2d05580/0ad69d1df2" style="border-bottom-color: rgb(130, 117, 176); border-style: none none dotted; border-width: 0px 0px 1px; color: #67589a; margin: 0px; padding: 0px; text-decoration: none;" target="_blank">3rd Annual RARE Patient Advocacy Summit</a> will be held </span><span style="line-height: 1.6em;">Sept. 11-12 at the Hyatt Regency Resort & Spa in Huntington Beach, CA.</span></div>
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It’s a chance to learn all about being a patient advocate, proactive and productive in efforts to better the lives of those with rare disease; to be an effective advocate in lobbying elected officials and reach out to major pharmaceutical companies, forming a relationship to bring drugs to patients.</div>
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<span style="font-size: 15px;">More than 200 participants are expected to attend. For those who can’t be there in person, the conference is also available to view via Livestream. </span><b style="font-size: 15px;">To register for the FREE Livestream Event, please go to: </b><a href="http://globalgenes.org/2014-summit-livestream-registration" style="background-color: transparent; color: #1155cc; font-family: georgia, serif;" target="_blank">http://globalgenes.org/2014-<wbr></wbr>summit-livestream-registration</a><wbr style="background-color: transparent; color: #663366; font-family: georgia, serif;"></wbr><span style="background-color: transparent; color: #663366; font-family: georgia, serif;">.</span></div>
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This year’s sessions include:</div>
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<li class="li2" style="border: 0px none; margin: 0px 0px 4px; padding: 0px;">Caregiving: Strategies for Staying Afloat, Presented by Caregiver Action Network</li>
<li class="li2" style="border: 0px none; margin: 0px 0px 4px; padding: 0px;">The E-Patient Revolution, Presented by Health 2.0 and Smart Patients</li>
<li class="li2" style="border: 0px none; margin: 0px 0px 4px; padding: 0px;">Patient-Centered Benefit-Risk Assessment, Presented by FasterCures</li>
<li class="li2" style="border: 0px none; margin: 0px 0px 4px; padding: 0px;">Making your organization an “Unstoppable Charity”</li>
<li class="li2" style="border: 0px none; margin: 0px 0px 4px; padding: 0px;">Lobbying at the State and Federal Level</li>
<li class="li2" style="border: 0px none; margin: 0px 0px 4px; padding: 0px;">Transition & Transformation with Rare Disease from Adolescence to Adulthood.</li>
<li class="li2" style="border: 0px none; margin: 0px 0px 4px; padding: 0px;">Must Have Collaborations for Successful Drug Development</li>
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Two new sessions this year:</div>
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<li class="li2" style="border: 0px none; margin: 0px 0px 4px; padding: 0px;">Deep Dives: Branched-off discussions that will allow small groups to interact with subject matter experts to help them go more deeply into the content of each session have been added to the agenda.</li>
<li class="li2" style="border: 0px none; margin: 0px 0px 4px; padding: 0px;">Science Briefs: 15-minute science pitches with 5 minutes of Q&A, discussing some of the most promising innovations in science.</li>
</ul>
<div>
<span style="font-family: Droid Serif, Georgia, Times New Roman, Times, serif;"><span style="font-size: 15px; line-height: 22px;"><br /></span></span></div>
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Those who watch on Livestream can participate via twitter and Facebook using the hashtag #2014GGSummit.</div>
<div class="p2" style="background-color: white; border: 0px none; font-family: 'Droid Serif', Georgia, 'Times New Roman', Times, serif; font-size: 15px; line-height: 1.6em; margin-bottom: 25px; padding: 0px; width: 711px;">
Read more about the summit<span class="s4" style="border: 0px none; margin: 0px; padding: 0px;"> <a href="http://cts.vresp.com/c/?GlobalGenes/36278db7ed/d7f2d05580/d791f236b6" style="border-bottom-color: rgb(130, 117, 176); border-style: none none dotted; border-width: 0px 0px 1px; color: #67589a; margin: 0px; padding: 0px; text-decoration: none;" target="_blank">here</a></span><span class="s5" style="border: 0px none; margin: 0px; padding: 0px;">. </span>To register, visit <a href="http://cts.vresp.com/c/?GlobalGenes/36278db7ed/d7f2d05580/9b29024729" style="border-bottom-color: rgb(130, 117, 176); border-style: none none dotted; border-width: 0px 0px 1px; color: #67589a; margin: 0px; padding: 0px; text-decoration: none;" target="_blank">globalgenes.org/events</a>.</div>
Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com0tag:blogger.com,1999:blog-3911918894908593884.post-55720426758692926112014-08-05T20:59:00.000-07:002014-08-05T20:59:05.007-07:00Neuroworx Consult<div class="separator" style="clear: both; text-align: center;">
<a href="http://neuroworx.org/LokomatPro_1101_5270-1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://neuroworx.org/LokomatPro_1101_5270-1.jpg" height="320" width="213" /></a></div>
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This summer we're finally getting Bertrand out to <a href="http://neuroworx.org/">Neuroworx</a>, a local rehabilitation center that focuses on spinal/neurological physiotherapy. For years we've heard nothing but good things about Neuroworx from Bertrand's friend <a href="http://noahsnoggin.blogspot.com/2013/02/turtle-steps-noahs-progress-15-months.html">Noah</a>. We're excited to see how Bertrand does with different equipment in a different environment.<br />
<br />
At Neuroworx Bertrand is going to try the Lokomat. "The Lokomat provides intensive locomotion therapy for the treatment of children with cerebral palsy or other neurological disorders."</div>
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<i>Why introduce robotic locomotion therapy?</i><br />
<i>• Functional movement and sensory stimulation play an important role in the rehabilitation of neurological patients following stroke, spinal cord injury, traumatic brain injury, as well as in patients with multiple sclerosis, cerebral palsy or other neurological disorders.</i><br />
<i>• Administering intensive functional locomotion therapy with manual training requires sufficient staff, is labor intensive and allows only relatively short training sessions.</i><br />
<i>• Manually assisted gait therapy can be challenging, especially in obese patients or in patients who are spastic.</i><br />
<i>• Gait pattern and guidance force are individually adjustable to the patient’s needs to optimize the functional training</i><br />
<i>• Improved patient motivation through visualized performance feedback</i><br />
<i>• Assessment tools allow easy and reproducible measurements of the patient’s progress</i><br />
<i>• If needed – easily switch from automated to manual therapy</i></div>
Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com5tag:blogger.com,1999:blog-3911918894908593884.post-20127978547797616332014-08-03T08:25:00.000-07:002014-08-05T21:00:10.943-07:00Brotherly Love<center>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP8uo4U8I0eciUJV953S7rkuqE4U0T3ow0Ij87-a0AorolLwgHHMMKVKF0riiBmxOaH3Omg_Uqb_FO4DqP1SbDDOC1_y0xEDPvxtCISum7h_EL6UD_DYfL-fkd_caSD7nT-LOYSjPnKTw/s640/blogger-image--560391559.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP8uo4U8I0eciUJV953S7rkuqE4U0T3ow0Ij87-a0AorolLwgHHMMKVKF0riiBmxOaH3Omg_Uqb_FO4DqP1SbDDOC1_y0xEDPvxtCISum7h_EL6UD_DYfL-fkd_caSD7nT-LOYSjPnKTw/s640/blogger-image--560391559.jpg" /></a></div>
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Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com2tag:blogger.com,1999:blog-3911918894908593884.post-30735729083671187972014-07-29T19:44:00.000-07:002014-07-29T19:44:49.396-07:00Update: Life after ICU<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/AVvXsEj1h74cmyLJMYjjAra_X_uVERhZADhSh0S-HD7h8MBNtdtOf3k9bUXAupf14uqA2mf_Kt7VPkW6MiyVFlfq_F6tJ4II_ukyizO-6PH3TlzXCCrAQKWBcTIRzDSFwg5-jxcKfUdmMo306Do/s640/blogger-image--136722656.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1h74cmyLJMYjjAra_X_uVERhZADhSh0S-HD7h8MBNtdtOf3k9bUXAupf14uqA2mf_Kt7VPkW6MiyVFlfq_F6tJ4II_ukyizO-6PH3TlzXCCrAQKWBcTIRzDSFwg5-jxcKfUdmMo306Do/s640/blogger-image--136722656.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo of Bertrand from last Wednesday. He was happy to be home! <br />
(Yes, the shirt says "chicks love me." Thanks, Abuelita.)</td></tr>
</tbody></table>
Bertrand came home from the hospital last Wednesday. His bedroom obstacle course includes: pulse oximeter, oxygen concentrator, 5 tanks of oxygen, suction machine, and all the tubes, probes, stickers, and doodads that accompany the former.<br />
<br />
Despite the accessories, Bertrand is doing very well! He is down to nighttime oxygen only (but he refuses to leave the nasal cannula in). <br />
<br />
Antibiotics are amazing.<br />
<br />
Bertrand wasn't the only one on antibiotics. Victoria also tested positive for mycoplasma, and it is suspected that my 7 week long "cough" was as well. (Cue the mommy guilt for inadvertently infecting the kiddos.)<br />
<br />
Meanwhile, Matthew had big deadlines at work (and a birthday), we've been fielding an avalanche of emails, and oh yeah, we have a 5 week-old baby.<br />
<br />
Please forgive us for the delay. <br />
<br />
If you have sent an email, I promise we will get to it. :) But, it wouldn't hurt to follow-up.<br />
<div>
<br /></div>
<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/AVvXsEjDc6SE8YMtN0xh-CSm19zdHy0Ss1YD74Wm5g3p9GPsw9f2VbPtiSJGYyn-3h2veB93NUTu6OtwBOgS8f_UHCwfY8hnRs4Bf-OGVRUhUPIzvAlGHkQ_aIvXDx880V_BoNtloD9zNLBu0u4/s640/blogger-image-1651894175.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDc6SE8YMtN0xh-CSm19zdHy0Ss1YD74Wm5g3p9GPsw9f2VbPtiSJGYyn-3h2veB93NUTu6OtwBOgS8f_UHCwfY8hnRs4Bf-OGVRUhUPIzvAlGHkQ_aIvXDx880V_BoNtloD9zNLBu0u4/s640/blogger-image-1651894175.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Winston in one of my baby blankets made by Abuelita Elisa.<br />Yep, it's blue. Everyone thought I was going to be a boy. Surprise!</td></tr>
</tbody></table>
Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com2tag:blogger.com,1999:blog-3911918894908593884.post-55283565321516445612014-07-23T14:33:00.000-07:002014-07-29T19:35:16.355-07:00Out of the ICU: Ups and down<div class="separator" style="clear: both; text-align: center;">
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<div style="text-align: center;">
<i>This is your lung on NGLY1. </i></div>
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<br />
<br />
<br />
Bertrand is into a regular hospital room.<br />
<br />
<br />
He improved rapidly yesterday (as measured by his ability to breath with decreased assistance), to the point where I got optimistic he might go home.<br />
<br />
Unfortunately, his oxygen kept dropping on room air, so they wouldn't release him.<br />
<br />
Today, he's still having lower oxygen on room air alone, but it's only problematic when he's asleep.<br />
<br />
It's likely he'll be discharged soon, but with a home oxygen machine and portable tanks.<br />
<br />
The NIH sleep study results came back, and they showed 10 central apnic episodes per hour (and low oxygen overall), so we'll also be looking at more complete and permanent solutions for his breathing, especially at night.Matthttp://www.blogger.com/profile/05481739222422277274noreply@blogger.com0tag:blogger.com,1999:blog-3911918894908593884.post-80950759680232020812014-07-21T11:12:00.000-07:002014-07-21T11:14:11.880-07:00What does community feel like?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixEM2KJrPQ2aNcdlRyT50-Gc3IYV_1x3m09gMLGndUu5KSMT1Va8eTRrwVZ_ep_ijP1jZ9iKJArweDTvSgsK5id2Zy0cwhumT-iLr4w2jh5pLhlr_Ox2BMfHVh40qAWpYVLpVag4yMeAM/s1600/IMG_2420.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixEM2KJrPQ2aNcdlRyT50-Gc3IYV_1x3m09gMLGndUu5KSMT1Va8eTRrwVZ_ep_ijP1jZ9iKJArweDTvSgsK5id2Zy0cwhumT-iLr4w2jh5pLhlr_Ox2BMfHVh40qAWpYVLpVag4yMeAM/s1600/IMG_2420.jpg" height="480" width="640" /></a></div>
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<span style="font-size: x-small;">The view outside of Bertrand's hospital room: a double rainbow.</span></div>
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<br /></div>
The love and support from everyone has been palpable.<br />
<br />
With all our heart, thank you.<br />
<br />
Rushing Bertrand to the ER and the subsequent PICU admission were scary.
<br />
<br />
But, we've seen worse.
<br />
<br />
Bertrand is tricky to diagnose, but doctors managed to identify the cause of his illness quickly.
And then to have it be bacterial and treatable? That is all good news.
<br />
<br />
The most surreal part of this entire episode has been that we had an NGLY1 community/family behind us
for the very first time.<br />
<ul>
<li>The Wilseys were the first to know we were headed to the
ER--before our own families. </li>
<li>The Leftwich family coached us on exactly
what to expect and do with mycoplasma pneumonia and offered support. </li>
<li>The German NGLY1 mom sent funny
memes which cheered me up.</li>
<li>And, Pam Stinchcomb was my angel, holding my virtual hand through a mini
breakdown. (The 19th was Winston's 1 month birthday. Will every one of his
birthdays be in the hospital and all about his older brother? Will he resent Bertrand? etc.)</li>
</ul>
<br />
To be clear, we've always felt love and support from our friends in the broader rare disease / special needs / undiagnosed community, but to have people who knew *exactly* what we were going through, and *exactly* what we were feeling? It was transcendent.<br />
<br />
I'm overwhelmed with gratitude
and joy.Cristinahttp://www.blogger.com/profile/05624255220638749596noreply@blogger.com2