tag:blogger.com,1999:blog-314614182024-03-07T15:26:35.024-05:00Ryn Tale's Book of Days:Sometimes in the heart of a lion you find a tale or two. This is the story of life with my beautiful 27-weeker preemie warrior princess.Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.comBlogger358125tag:blogger.com,1999:blog-31461418.post-54179966661935661582023-03-28T11:25:00.005-04:002023-03-28T12:42:55.168-04:00No Solid Ground<blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzmgHEhcydzsv0cGKZXSzj-oGWr5zwwg1d116C1IbZ8ePElQi1GD9-A2ycb717l_aVeJiSe45cV-Zbrxgh8xtJlxfwYvumqIpWEOsR-9gvRd9TsgYR9RriTzIujU0lqKqxagI6xpp8zrHeU_joZDy4uYNnxEBEXIsPJT5LtrcdwtFGckBPVOA/s4032/E8FD8C54-BE00-4924-8CE9-D132E6B25D98.jpeg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzmgHEhcydzsv0cGKZXSzj-oGWr5zwwg1d116C1IbZ8ePElQi1GD9-A2ycb717l_aVeJiSe45cV-Zbrxgh8xtJlxfwYvumqIpWEOsR-9gvRd9TsgYR9RriTzIujU0lqKqxagI6xpp8zrHeU_joZDy4uYNnxEBEXIsPJT5LtrcdwtFGckBPVOA/s320/E8FD8C54-BE00-4924-8CE9-D132E6B25D98.jpeg" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Ellie between surgeries. </td></tr></tbody></table></p></blockquote></blockquote><p>It's been an unexpected roller coaster of a 2023 so far. In November of 2022, 9 days after Ellie's 20th birthday, her shunt failed. She'd had it for literally 20 years with no revisions. I'm writing this from Children's Hospital Boston after her 6th revision since that first one in November. She's had a rough ride through meningitis/ventriculitis when that first revision got infected to External Ventricular Drains (EVDs) to revision after revision. The bacterial and protein debris left over from the infection has been wreaking havoc on the internal catheters and the programmable valve. </p><p>It's been rough. I am hoping this is the last revision needed. They replaced the blocked valve. The cerebral spinal fluid was really clear and she bounced back really fast. Here's to hoping. For now, Ellie is holding steady. She's still just as amazing as ever and the starlight never left her eyes in this latest surgery. It did in November. At that point I realized my assumption that she'd outlive us is entirely baseless. That changed me in a deep, deep way. The call to be present and be with her here and now is clear.</p><p>Between struggling to find stable carers for Ellie and trying to get to a solid working shunt it feels like the ground beneath us is always moving. It's like trying to get sea legs. </p><p>This whole experience is such a call to really consider our lives. I learned that it can't only be about Ellie. Dave and I have to create a life that we can live too. We are getting older. It made me want to move to a warmer more arid climate - possibly back to California/Los Angeles. Right after that thought the atmospheric rivers hit the state....Dave's take was that we'd know which parts not to go back to. </p><p>I also feel like we have been living on borrowed time. We've been so lucky to have had 20 years of no revisions. Hindsight is everything of course. </p><p>We are supposed to go home today. Ellie's got mixed feelings about it. She has been so very tired and a bit irritable as a result of unstable intracranial pressure. The image of water moving, rivers flowing and getting blocked comes to mind. Various areas of the country are awash as well. It's all fractals.</p><p>If there is no solid ground what do you do? I don't really know. </p><p>I can tell you the things that have shown to be lasting and real are my relationships with Dave and Ellie and my business partner, friends, and my clients. All people in motion, on their own rivers. </p><p>Seems obvious it's all about human connection beyond any routines or expectations of what the next day will bring. I still plan things. I just signed Ellie up for camp in June and it felt like unbridled optimism to do so. I'll be prepared and responsible and on top of things I have planned. But I don't quite trust in my plans. </p><p>It's been very humbling. I can only trust my inner knowing, be sensitive to, curious about, and responsive to the conditions that present themselves. I do feel a grinding down my ego and any arrogance I may have about control. That's probably a good thing.</p><p>The contemplative practices I learned as a teenager are put to the test too. Mindfulness meditation practices actually do work - they reset the brain and body to reduce inflammation, etc. </p><p>Discipline within the flux of a storm. Can't get into a regular routine so be opportunistic in the moments of quiet to fit things in. Like right now, writing this. </p><p>How do you deal with living on ever shifting waters? I'd love to learn from you. </p><p>Love,</p><p>Kathryn</p><p><br /></p><p><br /></p><div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com2tag:blogger.com,1999:blog-31461418.post-30577990840148168552022-09-19T21:36:00.002-04:002022-09-19T21:36:20.990-04:00Transitions and Systemic Challenges<p> The population has outgrown the infrastructure in the United States. What do I mean by that? Quite simply, doctors predicted that the population of disabled children would not make it to adulthood. Accordingly, systemic supports (food, housing, carers) for disabled adults stayed small. However, due to medical advances, those children have made it to adulthood and there are few options as they transition from the age of entitlement (under 22 years old) to the age of eligibility. Entitlement means the state must provide services because it's the law. Eligibility means the person would be considered for services if they were offered and if they existed. BIG DIFFERENCE. </p><p>The effects of this population / infrastructure imbalance in the United States are many. Here's a short list of some of the negative impacts - some. </p><p>1. The burden of care falls on aging parents. We know many stories of parents caring for their disabled adult child until they themselves become ill or die. I am searching for studies on the overall health of parents who survive and live with a child who has had severe disability and is total care. The stories of this are very sad in that all parties involved are isolated and involved in a stop gap solution. </p><p>2. Group homes are understaffed especially since the pandemic where what little infrastructure there was, was gutted. We have spoken to social workers and directors of not only group homes but day facilities who have all admitted that the standard of care is to keep the residents alive (fed and clothed) and not much else. We've visited group homes that reeked and where the vulnerable resident's health was not tracked or ever reported.</p><p>3. Abuse is rampant. Due to understaffing and poor systemic infrastructure the vetting system of staff hired to work in group homes and day facilities is poor as is their supervision. Abuse is under reported. The most vulnerable among us are at huge risk and being abused. </p><p>4. Those that work with disabled populations as a calling are highly skilled. Often they have degrees in the field. For all that care, education, and knowledge they are paid minimum wage. They are essential and paid horribly. This leads to a lot of turnover in these jobs as they age and may need to earn more money if they want to support a family for example. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicIjXCN_XUeCW6kWpZe3YXxVMb2dAUKmPB3yCHdRjBAv_ZsX1gu2St0Sl_JpyGg4wMkd84Ng3AoDDxnZ7xHnFOa7HLaprUJx5rTMKG2LTNVUhHetz_X1jbivhJ0OPP8Of9VUVDPv4PXtz4-kw5we3WzCgjVCQoaoLo74RIKaRoWMVtTDEpbeg/s4032/E86D89DE-2E27-411B-AA89-CA560421CA02.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicIjXCN_XUeCW6kWpZe3YXxVMb2dAUKmPB3yCHdRjBAv_ZsX1gu2St0Sl_JpyGg4wMkd84Ng3AoDDxnZ7xHnFOa7HLaprUJx5rTMKG2LTNVUhHetz_X1jbivhJ0OPP8Of9VUVDPv4PXtz4-kw5we3WzCgjVCQoaoLo74RIKaRoWMVtTDEpbeg/w240-h320/E86D89DE-2E27-411B-AA89-CA560421CA02.jpeg" title="Ellie working on sitting at PT" width="240" /></a></div>5. Graft. There are cases where money is put aside to solve some of these problems or at least help but the money doesn't get to where it is intended at the local level. <p></p><p>In the US you can call your local elected representative or senator and ask them for help. Remind them you are paying taxes. En masse I'd hope that may create some change. En masse this serious issue may get some air time. </p><p>It's daunting, disheartening, upsetting, and scary. Ellie will out live us both. She's doing great. And she is total care, nonverbal, and intelligent, curious, loving, and very, very vulnerable. It terrifies me what will happen to her when we pass away. The day before she turns 22, school will end. It's a big cliff we are about to go over in November of 2024. We are researching, visiting, searching for options which is how I discovered what I wrote about here. </p><p>If you are a parent/ guardian in the same boat, what is your experience? I'd love to hear from you. </p><p>Picture description: 19 year old Ellie working hard sitting independently at physical therapy this August. </p><br /><p><br /></p><p><br /></p><div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com2tag:blogger.com,1999:blog-31461418.post-21555615168791690762021-12-24T14:09:00.004-05:002021-12-24T14:09:28.352-05:00Happy Holidays and New Year!<p> Hi everyone,</p><p><br /></p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNNdOaR0rz-G5otVcp5MkpVeB5rErNyG69B2PGQZzb-VUChI9wI7H9AcZ8z7OCnS9_4HtHb58mUSnti_5rsyet8VUAkkuDV2JeCefbK3HuGdm9-zJY89NuVVEdeyKGvC3n4FC1aQ/" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="" data-original-height="886" data-original-width="886" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNNdOaR0rz-G5otVcp5MkpVeB5rErNyG69B2PGQZzb-VUChI9wI7H9AcZ8z7OCnS9_4HtHb58mUSnti_5rsyet8VUAkkuDV2JeCefbK3HuGdm9-zJY89NuVVEdeyKGvC3n4FC1aQ/w200-h200/C80A79F9-F609-4D4C-ADB3-8915D415F796_1_105_c.jpeg" width="200" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Ellie's new glasses</td></tr></tbody></table>As I write I can't help but wish health, safety, and happiness to all. It's been a hard time for many as the pandemic continues on and climate change wreaks global havoc. And yet we go on. We have been so lucky and privileged to have remained COVID free. Ellie continues to thrive. She has her own radio show now. She has named herself, "DJ Llama Donkey". No idea where she got that, but there you go. You can find her at the links below. The extraordinary thing about her doing this show is that she'll focus for a couple of hours working with Dave to pick the songs, decide the order and shout outs and then create her own songs. 2 hours. Is it the lion's mane we have been giving her or just more evidence of the brain's plasticity? Either way, I'll take it. She's really proud of her work too. They are seeing the same thing at her school where she gets to be on Perkins Radio from time to time. Parents are only has happy as their most unhappy child. In our case, Ellie's pretty happy. Below are some pictures of her to share a bit of our year. Much love to all, Kathryn <p></p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVUyvYMPXLeQh9B-NvuUSFdKXwkdA0f6pqFkfTiJJXPrFOI8b-I1K461H7xFyKA5Xjr5qgro6dhBPORzr9yCVK7Bayh3KS4ln_dXWCi1GnInYz_CAG1Gev7N5HsHbdfd79xCH2jQ/" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img data-original-height="768" data-original-width="1024" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVUyvYMPXLeQh9B-NvuUSFdKXwkdA0f6pqFkfTiJJXPrFOI8b-I1K461H7xFyKA5Xjr5qgro6dhBPORzr9yCVK7Bayh3KS4ln_dXWCi1GnInYz_CAG1Gev7N5HsHbdfd79xCH2jQ/w320-h240/56ED8ECD-FE7A-4AB4-A935-E781F5923410_1_105_c.jpeg" title="Dave and Ellie at the beach this summer" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">At the beach this summer in her hippocamp </td></tr></tbody></table><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/AVvXsEjpcnmVvU_oZCCNrY2dKR9koiRB8EDo-KrgF0ASI6T-0LqftdjmGCMCgh9toY6ZGVLlQnXoZ8k2gM87XzbAXlwdHHqgofzDfLFxDa7UFNJkLcZi_DLDK1KW7lkfqCJpLopfEeWD0g/" style="margin-left: auto; margin-right: auto;"><img alt="" data-original-height="1024" data-original-width="768" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpcnmVvU_oZCCNrY2dKR9koiRB8EDo-KrgF0ASI6T-0LqftdjmGCMCgh9toY6ZGVLlQnXoZ8k2gM87XzbAXlwdHHqgofzDfLFxDa7UFNJkLcZi_DLDK1KW7lkfqCJpLopfEeWD0g/" width="180" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Ellie's 19th birthday party</td></tr></tbody></table><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/AVvXsEhNV5P4UMjikq6PBHM0sDoioxVotNduDmeeJUyqlLjcqidkQf9Bb9cBq-tuAv5jVtaqPD9lmV7BhXuOUsIdBfcZ5W_iJ5YDv87ZcJwPn4eT8GNXvpggA3oaGDYaGZIlQ23B9jPjrw/" style="margin-left: auto; margin-right: auto;"><img alt="" data-original-height="1024" data-original-width="768" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNV5P4UMjikq6PBHM0sDoioxVotNduDmeeJUyqlLjcqidkQf9Bb9cBq-tuAv5jVtaqPD9lmV7BhXuOUsIdBfcZ5W_iJ5YDv87ZcJwPn4eT8GNXvpggA3oaGDYaGZIlQ23B9jPjrw/" width="180" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Beautiful Warrior Princess</td></tr></tbody></table><br /><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmTI0y6qVKdFjabXO1fyiIfEiM8ycmBt1nmzZ4Q8si4fp861ewNtlKr0SqIwsnMefnPJc5OtHFfoqvRUSfDr9dn8EuS4Zz4UU7rD8CoO9V5Q0FmsxcklIoYqoXsAB1r3J-3zMcmw/" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img data-original-height="1024" data-original-width="768" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmTI0y6qVKdFjabXO1fyiIfEiM8ycmBt1nmzZ4Q8si4fp861ewNtlKr0SqIwsnMefnPJc5OtHFfoqvRUSfDr9dn8EuS4Zz4UU7rD8CoO9V5Q0FmsxcklIoYqoXsAB1r3J-3zMcmw/w300-h400/EF4EF33A-A26F-4EE9-ABCA-891C4B5421BD_1_105_c.jpeg" width="300" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">At her school, rocking the vocational program!</td></tr></tbody></table><p></p><p><span style="caret-color: rgb(0, 0, 0); font-family: Helvetica; font-size: 12px;">Twitter </span><a class="gmail_plusreply" id="plusReplyChip-0" style="caret-color: rgb(0, 0, 0); font-family: Helvetica; font-size: 12px;">@</a><span style="caret-color: rgb(0, 0, 0); font-family: Helvetica; font-size: 12px;">djllamadonkey</span></p><p><a href="https://twitter.com/djllamadonkey" style="caret-color: rgb(0, 0, 0); font-family: Helvetica; font-size: 12px;">https://twitter.com/djllamadonkey</a></p><div style="caret-color: rgb(0, 0, 0); font-family: Helvetica; font-size: 12px; text-size-adjust: auto;"><br /></div><div style="caret-color: rgb(0, 0, 0); font-family: Helvetica; font-size: 12px; text-size-adjust: auto;">Radio Station Link</div><div style="caret-color: rgb(0, 0, 0); font-family: Helvetica; font-size: 12px; text-size-adjust: auto;"><a href="https://djllamadonkey.airtime.pro/#">https://djllamadonkey.airtime.pro/#</a></div><div style="caret-color: rgb(0, 0, 0); font-family: Helvetica; font-size: 12px; text-size-adjust: auto;"><br /></div><div style="caret-color: rgb(0, 0, 0); font-family: Helvetica; font-size: 12px; text-size-adjust: auto;"><br /></div><div style="caret-color: rgb(0, 0, 0); font-family: Helvetica; font-size: 12px; text-size-adjust: auto;"><br /></div><div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com0tag:blogger.com,1999:blog-31461418.post-74610442872568799132021-04-06T14:49:00.006-04:002021-04-06T14:53:47.426-04:002021 Check In/ Be In<p> Hi Everyone,</p><p><br /></p><p>We are still here and all vaccinated with Moderna. Because of Ellie our whole household and her carers were all able to get vaccinated. Dave and I are classified as "in home unpaid essential healthcare workers". Ain't that the truth! ;-)</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlk7mM8EVbhmEvd17ffO7kgb_ykAY9g0PsDWU_Z8k6OTZqupYqA31Mef69gIyypOA-U_QX-ScTfmCGQCi0G2EUVq2-ywlauzMoP-m1FghFpW3kvSpk1avN_FqWe6e9XBxQcBNWeA/" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" data-original-height="499" data-original-width="392" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlk7mM8EVbhmEvd17ffO7kgb_ykAY9g0PsDWU_Z8k6OTZqupYqA31Mef69gIyypOA-U_QX-ScTfmCGQCi0G2EUVq2-ywlauzMoP-m1FghFpW3kvSpk1avN_FqWe6e9XBxQcBNWeA/w189-h240/image.png" width="189" /></a></div>I'm still worried about variants but not so freaked out about being within 3 feet of people while masked at the grocery store and not so freaked out when people walk by Ellie really close (we are obviously still masking while in public). It is incredibly to read the news and see how many people are not really distancing in stores and to see the spring break events that might be super spreaders. Everyone is really fatigued by it all. Now that it's spring and the weather is a little warmer I do feel a life of energy. There's still not much to do, it's still very repetitive, but I'm trying to pull out of that fatigue. Ellie's feeling it too. She's quick to cry and was just sick with some mystery virus - 102 fevers for 4 days with advil. She was tested and it wasn't covid but still hard. She's been tired. We worry about her iron levels and her diet. I just found this great book: Dropping Acid by two doctors who researched reflux and the pepsin issues. I have reflux too as it turns out - the lump in my throat that has been a constant for years and the hoarseness of my voice. My voice was so tired at the turn of the year my vocal cords would seize up. Not good as my job is teaching, coaching, consulting and all over zoom. Turns out the combo of 'silent' reflux, too much singing to Ellie in the months we had no help, and all the zoom meetings contributed to vocal cord fatigue. So I need to change my own diet AND I really needed to change Ellie's too. Turns out the number one reflux food is chocolate and I had been giving her chocolate (avocado) based pudding every day. No wonder I have not been able to get her off the reflux meds! ughhhhhh. The good news is avocado is a great food for refluxers. <br /><p></p><p>What I love about this book is that it's about controlling reflux with diet. Have been revamping all her recipes and need to expand her diet anyway. It's an ongoing dance. </p><p>This spring some of her favorites are:</p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdH9RMLo-SmGL70xRGDGpNA3ATSZR2uYJXSAc9EngdXYUNG1zMmY-ljJGemgY5jrjFYA0U4HWWeBUpgViQ8GNul55okbRf70USyjjaH3dlLM8PKhJS0H9cFW9O6so1CGK6BGgKlw/" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="" data-original-height="886" data-original-width="886" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdH9RMLo-SmGL70xRGDGpNA3ATSZR2uYJXSAc9EngdXYUNG1zMmY-ljJGemgY5jrjFYA0U4HWWeBUpgViQ8GNul55okbRf70USyjjaH3dlLM8PKhJS0H9cFW9O6so1CGK6BGgKlw/w200-h200/946AB713-C517-4261-BF06-C6C560151BA6_1_105_c.jpeg" width="200" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><br /></span>Ellie's favorite hairdo - the big bun!</td></tr></tbody></table>Obla di Obla da (especially the Gabriella Bee version)<p></p><p>Footloose by Kenny Loggins. We tried to watch the remake but it starts with a car crash - do not recommend. She liked the 1980's version better anyway - go 1980's - it's way less violent.</p><p>Ellie says that after the pandemic she wants to have a family reunion and go to Africa - specifically - Egypt! I'm so there...some day. She also wants to go to her local coffee house again and do iPad club there. She misses the bustle of the place. </p><p>She's still into dance parties and jam sessions. </p><p>We are nearly done with all the Harry Potter books. <br /></p><p>She was doing virtual school for so long one of her favorite things to do was go visit her school at the weekend and look in the windows. She definitely struggles with the constraints of school (e.g., the schedule) but she certainly loves it just the same. </p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU4oBSpv9FzdRa9VRtnxflHKG7yXyou3DxLGYZ2P14esAQeOZezNyCHgwZqLEH0VX8HrfDNFCdGVqYQ52hyaduyaqSwlPCRl-EBsLFdNbAU7WaKmlMQx5Li4uvn0V6-r_QBQYLlw/" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="" data-original-height="1024" data-original-width="768" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU4oBSpv9FzdRa9VRtnxflHKG7yXyou3DxLGYZ2P14esAQeOZezNyCHgwZqLEH0VX8HrfDNFCdGVqYQ52hyaduyaqSwlPCRl-EBsLFdNbAU7WaKmlMQx5Li4uvn0V6-r_QBQYLlw/" width="180" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Ellie at her school.</td></tr></tbody></table>We started bullet journalling including 1 for Ellie for us to track her diet and care daily and she has a journal where she can recorde favorite questions, put photos in there of selfies with carers, and record her monthly top hits. A carer gave her this to track her hair styles too and Ellie really likes it. It's a way to give her choices too. We got her a little instant photo printer that she can use with her iphone. Oh - yes we got her an iPhone so she can keep in touch with her friends and family. She likes doing selfies. <p></p><p>That's the latest. It's a hard time globally for everyone. Waayy harder for some than others. Everyone is under so much pressure. There's tension between those with privilege and those without and COVID deaths report that better than anything else. I am hopeful that coming out of this there will be social and environmental innovations that make the world a better place. </p><p>Hope matters. Everyone is in their shadow - so compassion matters too. </p><p>If there is anyone reading this - I am wishing you and your loved ones grace. Wish that for me too. I need all the help I can get. ;-)</p><p><br /></p><p><br /></p><div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com4tag:blogger.com,1999:blog-31461418.post-10465510392429541202020-07-22T09:44:00.001-04:002020-07-22T09:57:10.212-04:002020 Post, COVID-19 Edition<div dir="ltr" style="text-align: left;" trbidi="on">
Hi Everyone,<br />
<br />
Checking in. We are ok - COVID-free so far. We are pretty much trying to shelter in place as it'd be bad if Ellie got the virus. She eats by mouth but a teaspoon at a time. A 1/2 cup of puree can take her 30-40 minutes to eat pending her appetite. When she is sick that time period can triple making it hard to keep her energy levels up. Her drinking is about a tablespoon per "drink". For Ellie drinking means we pour a small bit of water into her mouth and she then carefully works to swallow it. She has low lung capacity from having had borderline chronic lung disease as a preemie and no capacity to do aerobic exercise. I don't know, due to her low muscle tone/hypotonic Cerebral Palsy, if she'd be able to cough it out if it went in her lungs. It could get into her brain or heart per the sequelae that has been reported.<br />
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<tr><td class="tr-caption" style="text-align: center;">Ellie in her stander.</td></tr>
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So best not play a deadly game of dice with her. We are playing it safe, keeping her home, keeping ourselves very distant from others. This thing is so contagious if it entered our home we'd be hard pressed to keep it from her as she is total care. We are blessed that we can shelter at home in terms of still keeping our jobs (so far) and having found ways to get food delivered.<br />
<br />
Ellie's transition to "home school" was hard on her. We found about about 3 weeks in that she thought she was the only one who had been sent home. She started talking about "old school". She was really weepy breaking out into tears at random. Grief visits us all this way, a friend who stops by unexpectedly at the oddest moments. I think she thought she was being punished.<br />
<br />
Once we found out we started reaching out to teachers and students to show they were at home too. That helped.<br />
<br />
Her other upset was to realize that being home was not equated with the famous "no school" and that home school was an actual thing. That was quite a disappointment in her young life indeed.<br />
<br />
Her teacher was also very slow for the most part to go virtual. They were uncomfortable with tech but also had already had trouble connecting with Ellie. She is a bit adrift of connection and the poor handling of zoom webinars means she is talked over, the pace is too fast and she is left behind with sensory overload. It's disappointing and an organizational psychologist I get what a huge sea change this is for the teachers. So patience is king here as we all pivot and shift and deal with the struggle to manage everyday things that were once easy that are now hard.<br />
<br />
AND I get it that this comes from a hugely privileged place. My "problems" are good problems to have versus real problems including poverty and skin color discrimination and flat out danger because I am white. Life, is and has been for hundreds of years, exponentially harder for brown and black skinned fellow homosapiens here. I am reading Ibram Kendi's How to Be an Anti-Racist and just finished D'Angelo's White Fragility. If I want there to be more tolerance in the world for difference I need to start with myself and unravelling my own racist indoctrination. I have been working on that for years but am riding the wave of momentum to take more direct action, as a leader in my organization, to accelerate the dismantling of systemic racism where I have influence. What's that saying, never doubt how small acts can help change the world..etc.<br />
<br />
The world is reordering itself. Some battles will have to be fought again - like equal access for those with disability to attend school. A new class of people has formed - those vulnerable (and those caring for them in their homes) to the virus versus those that are not. It's a difficult time right now for billions of people. Things are unstable in the US in a way that is unprecedented in my own life time.<br />
<br />
For the record - the US did not vote Trump into office. Hillary Clinton won the majority vote. But due to our antiquated electoral system, Trump was able to steal the election just like George Bush Jr. was able to steal it from the environmentalist, Al Gore. Can you imagine how much better the environment would be if Gore had won (he also won the popular vote)? I hope all of this wakes up all the people who don't vote, who don't participate in the active process of being a democracy...which we barely still are. Could be that we are not and I am just in denial. It is a horrifying thing to understand how deeply flawed our democracy is.<br />
<br />
Anyway, I am thinking about all the parents of special needs and typical kids, fellow bloggers and blog readers I have met in writing this blog over the years and feeling protective and worried for us all.<br />
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com2tag:blogger.com,1999:blog-31461418.post-89389234358131427782019-03-10T16:50:00.001-04:002020-07-22T09:54:09.875-04:00Ellie's Healing Powers<div dir="ltr" style="text-align: left;" trbidi="on">
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It's been roughly over a 2 months since we were in the ER on New Year's Eve wondering what the future would bring...wondering if she would still be here...still be whole...still be her sparkling, musical, snarky, happy, sweetie, intelligent self. (scroll down for this back story)<br />
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When the ventricles held their own they tested her for other things and found she was anemic. The symptoms of anemia are very similar to symptoms of pressure on the brain: fatigue, out of sorts, pain, etc.<br />
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We treated the anemia and she is back to baseline and along the way they took several more scans...and still no change in her ventricles.<br />
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The doctor's proffered up some scary options...over my dead body types of options...no you may not drill into her skull to insert a pressure gage to sit on her brain "just to be sure there is no pressure"...look to the child for crying out loud and the child was only minimally symptomatic.<br />
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There was that whispered hope though that maybe, possibly, her body had figured it out...we'd have to wait and see which felt like playing Russian Roulette with her life. As every parent of a child with any chronic medical issues knows, it's alway navigating toward the lesser evil when it comes to medical interventions. Wait and hope she doesn't get more brain damage or do someting that could give her more brain damage... shitty choices indeed.<br />
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We waited and scanned.<br />
<br />
Our last visit to the neurosurgeon - who has taken a team approach and discussed Ellie with her pediatrician - I like her because of that - said that she had studied all Ellie's scans and that she suspects Ellie's shunt hasn't been working for a long time. The only clear scan of it is really years ago.<br />
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That and the fact that there has been no change.<br />
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The plan is this: scan her again in three months. If that is ok, then scan again in 6 months. And if that is clear go to yearly. She suspects Ellie is shunt independent.<br />
<br />
This means that our child who left the NICU deaf now has perfect hearing.<br />
Our child whose vision was so very minimal is now at 20/200.<br />
Our child who had ventricles that could not drain the brain's cerebral spinal fluid because they were filled with scar tissue from the bleed, can now do that on her own without extra plumbing...<br />
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The messages I have been giving Ellie are that her body has amazing healing powers. That she is so very strong. All of the doctor's visits and the conversations have of course scared her as much as us.<br />
The message is, your body is an amazing healing machine!<br />
<br />
She gets a little smile when I say that too her...she's pretty patient with me...<br />
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com0tag:blogger.com,1999:blog-31461418.post-30736077333159392912019-01-11T14:48:00.000-05:002019-02-02T20:02:09.954-05:00Inter-Ventricular Shunt Discontinuity and Other Nightmares<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">Ellie in the ED 12/31/18</td></tr>
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Hi Everyone,<br />
<br />
I thought 2018 was a rough year. 2019 came in before the ball even dropped and decided it was going to get real. We spent the better part of December 31st, 2018 in the Emergency Department with Ellie getting a whole bunch of tests to make sure her ventricles were the same size. It started bright and early when we took her to her orthopedic doc to get a spine x-ray to inform those making her new body jacket. Ellie has a bad curve that we are keeping at bay through a number of things including: a back brace/body jacket/ TLSO, daily tummy time and back strengthening, and weekly network chiropractic. Network chiropractic is very gentle and has helped both me and Ellie a lot!<br />
<br />
The doctor came in after the x-ray to meet with us and told us that Ellie's curve is stable. But then he showed us the report from the radiologist that said her shunt tubing was disconnected at c4 and c5. When he told us that my brain when into slow motion to explain it to the rest of me. My thought was, <i>ok... so the tube that comes down from the valve connected to the shunt that goes into.. her brain.. to drain her cerebral spinal fluid (CSF).. that gets stuck in her ventricles because of the scar tissue that formed after her inter-ventricular hemorrhage as a baby... is disconnected....WHAT?!!!!</i><br />
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He calmly advised us to go down to the Emergency Department right away and that they had called ahead and the team there was expecting us.<br />
<br />
So that happened.<br />
<br />
We got out of there by dinner time - which is really unusual. We only left after all the tests turned up no infection, etc. Her ventricles, thank god, were the same size and still really small.<br />
<br />
You might ask, why didn't they just operate to fix the tubing and be done with it?<br />
<br />
Good question. The thing is, since her ventricles were the same size, there are two possibilities for what is happening. The first, and most likely, is that the shunt tube formed what they call a "calcified track". I wish it was actually calcium as it'd make a more stable track. But what they mean when they say that is, the body treats foreign bits in it as something to be contained. To contain the shunt tube it formed scar tissue around it. When the shunt tube broke the "calcified track" began acting as the tube. The problem is that the body will now treat the ends of the tube - the broken ends - as foreign matter to be contained and will calcify around them too. It may only be a matter of time until the track closes. When that happens there will be nowhere for Ellie's CSF to go and will blow up the ventricles like balloons, squishing her brain. This could lead to a number of horrible things including death.<br />
<br />
But there is this other possibility which is rare but not unheard of. Some times kids who have shunts do become shunt independent. Meaning - their bodies just figure it out and the shunt may break but there is no change in ventricle size. No one knows why and it's rare. I wish for this to be the case for Ellie.<br />
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AND this is one of the reasons they are wary of going in and just replacing the old tube with a new one. If they do that, and Ellie was actually not depending on her shunt to drain her CSF, then that could hurt her too by over draining the fluid creating more problems. Additionally, since this will be Ellie's first shunt revision since 2003, the revisions don't usually work correctly right away leading to a "flurry of operations" or so the neurosurgeon said. I am sure it feels like a flurry to them....but you get the idea. There is huge risk of complications from anesthesia as well as infection with each surgery and a huge emotional and physical toll on Ellie. <br />
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Oh yes, and the brilliant neurosurgeon who initially revised Ellie's shunt when we got to Boston 15 years ago because none of the docs in LA could get it right - she's on sabbatical and unreachable. We are scrambling to get a new team together and will meet with them on the 23rd or earlier if Ellie becomes symptomatic.<br />
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I feel like I am living in a bit of a twilight zone to be sure. Ellie had been sleeping an hour extra a night and we were saying, "Yay! She's finally sleeping in a bit like a teenager does!" But no, of course not. She's a morning bird. So at first we thought this was a neuro symptom, though it wasn't this time.<br />
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This last weekend we were back in the ED because she spiked a fever (which could mean an infection). When we got there we also found out she was tachychardic (heart beating in the 143 BPM range) which was really concerning. Again, a ton of tests. Again her ventricles were the same size. Luckily they have this new quick Magnetic Resonance Imaging scanner that is amazing and they don't need to put her out for it. Technology has come a long way in 7 years.<br />
<br />
However, they found her hemoglobin was at 7 when it's supposed to be a lot more. Her poor heart was pumping twice as hard to deal with her shrunken red blood cells.<br />
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Now I feel like we are in a race against her ability to form scar tissue around the tube ends - meaning we have to correct for her anemia as she's not strong enough to have a surgery if she needed one. After 48 hours they let us go home with an iron supplement and follow up appointments to get her blood tested in two weeks.<br />
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Suffice to say, we are on it. I make her this great mushroom soup that's vegan because when she was little I tried to give her meat but she would vomit it up. It is clearly time for a new trial. Dave cooked a filet mignon and we put it in the vitamix with the mushroom soup and it tasted amazing. You couldn't really tell it was in there. It just made the soup a bit richer and Ellie ate it down. She is her father's daughter and he always says he needs meat for his blood when he is feeling depleted. I used to think that was funny. Not anymore.<br />
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She is also on a prescription iron supplement and I am redoing all her meals to be iron rich. It's probably also a testament to her whole foods diet that she didn't appear more symptomatic with this until it was advanced.<br />
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It takes about three to four weeks to build up the blood again. I feel terrible this happened at all. Whenever both Dave and I get busy things fall through the cracks and clearly we don't have that sort of luxury in our lives. Nor will we ever. It's also made me rethink what I wrote about in my last post.<br />
<br />
Yes, it's important to prepare for the future. However, I was so focused on that and taking on extra work to prepare for that, that I was less focused on the present. Sitting in the ED on New Year's Eve when we didn't know what would happen I had a reckoning. I kept having these flashes of her empty room and what my life would be like without her. I honestly don't know how I'd ever handle that. I realized I needed to make the most of my time with her each day because there is no guarantee. I hold that equally with the fact that I fully plan for her to outlive me. But, these episodes have shown me how precarious an assertion that is.<br />
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On New Year's day we were all happy to be at home versus at a hospital. I asked Ellie what her New Year's wish was for 2019. She signed mom and then used her voice to say "time". And I asked her - do you want more time with mom? She signed yes.<br />
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I do think she reads my mind half the time.<br />
<br />
She is feeling better today as the nutritional interventions help "build her blood". Ellie is amazing as she ever was. She's still the most joyous person I know. You could tell almost immediately how much better she was feeling as she would just giggle out of nowhere. Or maybe she was just laughing because the iPad restrictions we put on her were not in use when she was in the hospital. ;-)<br />
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She loves a challenge.<br />
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com1tag:blogger.com,1999:blog-31461418.post-39509807473389817912018-11-25T13:12:00.001-05:002018-11-30T16:03:31.975-05:00Because her life depends upon it...<div dir="ltr" style="text-align: left;" trbidi="on">
Hi Everyone,<br />
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<tr><td class="tr-caption" style="text-align: center;">Ellie Prom 2018</td></tr>
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Ellie turned 16 two weeks ago and I can hardly believe it. Because she is 16 we are thinking a lot about what they call in this country - transition. For special needs parents it's really Transition - with a capital T. It's when Ellie will go from "entitlement", meaning being entitled to services like school, to eligibility to programs - meaning no guarantees that she gets in. It also means minimal oversight or regulation in terms of quality. Special needs adults are on their own. <br />
<br />
School for Ellie ends the day before her 22nd birthday. Ellie's school and other agencies hold "Transition Fairs" to get you thinking about all of this. Right now, under entitlement, Ellie goes to school and during the day the school provides not only learning but physical, communication and occupational therapies. There are also after school programs that Ellie gets to attend. It's in a word: awesome - meaning truly awe inspiring in terms of what she receives from her school. She is really happy. When she turns 22 - unless we figure something out - all of that stops. We are starting now. My goal is to create an enriched day program where Ellie and other 22 somethings with CP can keep learning from wherever they are at and keep having a supportive community around them.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVbWh2CeHjJX01fuwrShDcdpr50yu8RnHuR-wfuVpdSBfy3V3H4N-pppXPJuNDG2mKwpgwnwzeN4GVrytsNjqahT9zOzHfnzrChy9r_sO70_GqSzmGR6r7lkCcmD1PDUqT-K3Frg/s1600/IMG_8980.MOV" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="240" data-original-width="320" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVbWh2CeHjJX01fuwrShDcdpr50yu8RnHuR-wfuVpdSBfy3V3H4N-pppXPJuNDG2mKwpgwnwzeN4GVrytsNjqahT9zOzHfnzrChy9r_sO70_GqSzmGR6r7lkCcmD1PDUqT-K3Frg/s320/IMG_8980.MOV" width="239" /></a>I wrote about this last February and since then we started exploring other day programs too to understand what is out there even though the main plan is to create our own enriched day care. So far that exploration has been pretty dreary and the stories we have heard about other kids in terms of the later half of their life have also been pretty depressing. An example is our neighbor's daughter who lives in a group home nearby. The parents took care of her at home until they were in their 70s and the mom got sick. She used to be able to get out of her wheelchair to go to the bathroom and she used to be very communicative in many ways. Since she moved in 5 years ago she has gained 40 pounds because of all the pasta and cheap food they feed her. She no longer can get out of her chair herself and there is a list of other things she no longer does. This is my nightmare scenario for Ellie. And you know what, it could be even worse. In 2009 a state facility in Florida got shut down because the staff were hurting patients and killed one by putting bleach in the guy's g-tube. Abuse happens to the vulnerable. It's horrible but it does. My question is, how do I protect her from things like that after I am gone? It's a big scary overwhelming question I live with every day. It's also a galvanizing source of motivation. And the 5 years until she is 22 are going to go quickly. As we figure this out I will keep you posted. Hopefully I will have good news and be able to build something great for her and others. Right now part of the plan includes me working two jobs to be able to renovate the space.<br />
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Ellie at 16:<br />
<ul style="text-align: left;">
<li>She went to her first prom with her Dad in May of this year. She picked out the dress on her own and you can't deny she has style.</li>
<li>She has a best buddy for the first time and they are both Swifties. </li>
<li>She is unplugged from iPad and devise / computer based play right now so that she can focus on her communication and widening her circle of friends. This is the hardest transition of all in that we have to change ourselves. We have to insist on her using her voice and we have to insist that she work hard to do that. As she is our only child the current way we have been parenting - where we pretty much do everything for her has proven to be a de-motivater for her to socialize much with others or go along with other plans or activities that are not her own. This is on us so now we are working to change it. That is what the transition fair taught us - that we need to get others engaged in helping/ connecting with Ellie in parts of her life if we wish her to have the best support network possible. We have to change to ensure that. We are not great at asking for help and that is why we typically do it all along with the helpers we hire. It's on us to create conditions that motivate Ellie to connect with others - to care to do that. </li>
<li>Ellie is taking the bus home from school for the first time and it's going great. We live in a new school district and it's a safer set up. She is doing beautifully with it. </li>
<li>Ellie stayed overnight at a school camp for two nights and loved it. She came home and said the best thing was being away from her parents and that she wanted to do it for a week...as this is typical teenage sentiment - part of me is happy to see this reaction! ;-) We are working on figuring out sleep over camp for a week next summer. </li>
<li>She's doing beautifully with her power chair.</li>
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One of our main goals for Ellie not just this year but for a long time is for her to be able to communicate with others. Communicate her needs, her thoughts, her cares and connect with others. Her life literally depends upon having a say and being able to say. We cut out iPad and computer for the moment as she all she wanted was those devices no matter who was around. Not a great start on widening her circle of friends. It's not stranger danger after all. It's being able to connect with others. How many people have come into your life at just the right time to give you that bit of help whether it be wisdom or a kind word or aid in some way? That's less likely to happen with your face buried in an iPad. She did like the idea very much that her main job is to help those who help her because she's the boss. ;-)</div>
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com1tag:blogger.com,1999:blog-31461418.post-35988645188557100072018-02-26T13:43:00.001-05:002018-02-26T13:43:30.439-05:00She's Driving<div dir="ltr" style="text-align: left;" trbidi="on">
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Ellie is working on driving her electronic wheelchair. We hope to get to bring it home this summer! </div>
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com1tag:blogger.com,1999:blog-31461418.post-31948772297649808222018-02-17T15:08:00.000-05:002018-02-17T15:08:28.004-05:00Stand Out Days<div dir="ltr" style="text-align: left;" trbidi="on">
Hi. Back from my surgery - new hip installed. Very unhappy to find out the technology did not include iron man type capabilities or even Wifi, but then again my bar was set pretty low. It's been so long with that joint not functioning that my main goals were to be able to stand upright, walk without a limp, and not be in agonizing pain all the time. So far I have met goal one. Am working on healing and physical therapy to get to goals two and three.<br />
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I'm sitting here now with Dave, Ellie, and Nanny Bernie as they make a portfolio. It's part of a kit she got from her uncle. Ellie's attention is waning but Dave is gently keeping her in the game. In school they teach the kids about having their "brain in the group" and identifying which zone they are in and which emotional zone they need to get to, to have their brain in the group. I love all of this. Adults need it too.<br />
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The folio is meant for a sketchbook but Ellie wants to put her newbies in it. Watching them work together to make this is the most heartwarming thing and I feel grateful for these lovely souls who make up my family.<br />
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More pics later.<br />
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I hope you feel similar awe about those closest to you and if you don't now - I wish it for you in the future. I know what it feels like not to have that so maybe that's why I am so grateful now. That's the thing about adversity. It kicks the entitlement right out of you and makes you appreciate what you have.<br />
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com0tag:blogger.com,1999:blog-31461418.post-3635348270767829252018-01-28T10:26:00.001-05:002018-01-28T10:26:28.944-05:00Happy 2018 and Ellie is 15<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">Ellie practicing her sitting at PT</td></tr>
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Hi Everyone,<br />
<br />
It's been awhile. Where to start...Ellie is doing great. She's healthy, happy, and very 15. She got Taylor Swift's new album "Reputation" for Christmas and has been listening to that and dissecting the songs she likes best. She seems to really study them. Whenever she loves a song she will get on her computer and find it on YouTube, slow it down to .5 speed and play parts over and over until she has them. Then she looks up the lyrics and those online tutorials about how to play it on the piano. These look a little bit like guitar hero which she also slows down and studies. She goes deep! In other news she is making progress with her electronic wheelchair which will come home with her this summer. She also got a new voice that is iPad based with a key guard and it's much, MUCH better than the Dynovox. It's many pounds lighter, the battery lasts hours and hours more and it's easier to use. She continues to make progress using it sometimes to our chagrin when recently when she said good by to a new carer we were interviewing and I quote, when she was asked to say goodbye she said, "I don't care. Goodbye!" So much for manners but also, I think I am going to switch to saying, Ellie, so and so is leaving. Versus asking her to say hello and good bye like she's a little kid. I have to change too and start treating her like she is 15. To her credit, it's hard on her when there is a change on her team. As it turns out this person was not the right fit so we probably should have listened to Ellie on that one.<br />
<br />
Her hips are doing well. She still does not sit criss cross anymore. I haven't tried to push her on that. She lost some range to be sure on her right hip. However, her hips are not pulling out of their sockets anymore. Trade offs. Her feet are also staying relatively straight although one side is slowly starting to turn again despite the surgery. That is the bummer of CP. Still, I am glad we did those surgeries. Our biggest issue now is trying to keep her spine from twisting. We are careful to watch her TLSO/body jacket to make sure it's doing it's job. But, again, a trade off. Like the women who used to wear corsets - the price of that spinal support is weak back muscles that then offer limited support to her spine. We are working with her to build back strength by doing tummy time and having her push up into cobra when she does this. She is getting stronger but I don't think we are doing enough. She's a happy kid for the most part though. She is very keen to watch the weather for possible snow days where she gets to stay home and dance, dance, dance.<br />
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She's still a sweetie pie. I think she has reached her final size as well. She didn't make it to five feet but she can wear xs small at the gap so she will not have to be in children's clothes forever once she is an adult.<br />
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Kids like Ellie are living longer. The world has not adjusted to that fact yet. I am working on a plan to create a school for her for when she is 22 and can't go to school anymore. I have been told I can't call it a "school" because "school" is only for the under 22 set. But it's still going to be a school. Why shouldn't Ellie and kids like her who have spent countless hours in hospital and in bed recovering, who have missed a lot of school, keep learning after they are 22? I get that public funds are not the same but there are funds that already go to supporting people with severe disabilities in some states. Ours is one of them. However the bar for learning in these state centers seems low for the most part. I believe the lack of emphasis and urgency on the need for continued development of kids/soon to be adults like Ellie is rooted in and antiquated understanding of the brain. When Ellie was born in 2002 the doctors told us that whatever she achieved by age 5 was it, because the brain stopped developing at that point. This very wide spread understanding of the brain as been proven wrong by science over and over but our society has not caught up in terms of structures and supports for our children who will live to adulthood with cerebral palsy. Ellie's brain, like mine and yours, is capable of learning and developing for her whole life. I want her to have a place to go where she still gets to learn science, history, art, math, literacy, art, music, etc. Where there are expectations of her to do so. I can't stand the thought of her at one of those centers where it's really glorified baby sitting with "activities" that have no real plan other then keeping the clients busy for the day. The thought of that makes me sad and I have visited a few of them and they made me feel very sad at the idea of Ellie being in them. I want Ellie to keep learning and growing. I want to keep bringing the world to her which has been our philosophy all along. There has to be a way to do that.<br />
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<tr><td class="tr-caption" style="text-align: center;">Ellie with "Drop Mix" making mashups Christmas day 2017</td></tr>
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To that end I want to start a school for 22 somethings like Ellie. It will be a day program with a trained teaching staff as well as specialists. That's the other thing that is a bummer about school ending at 22. Currently Ellie gets occupational, physical and speech/communication therapy, right at school. At 22 that's done. We will have to find a way to get her to these specialists and keep our jobs at the same time. Ellie is still going to need all those services which will still be of great benefit to her. You can see the problem right? Anyway it's a daunting task to be sure. I have the building to house the school and now have to go through the process of converting it, getting it up to code (after I figure out the codes), get approval for it, see if there are grants or funds I can apply for to help run it ongoing. Decide to either be a non profit or an "enriched day program" that can receive state and federal funds. One of the special ed teachers i consulted with said the space could fit fifteen young adults with CP, wheelchair users. This does not solve the problem nationwide but I do hope to create a new model of care that may be scalable to other states. There are probably other societies that take all I say here for granted, Of course! We do this already!, I can hear them say. Fact is, it doesn't work this way here or anywhere in the US. Just a few things to figure out... For me, and I have written about this before, it's about keeping Ellie safe, happy, always learning and respected. I worry about what will happen to her once I am gone. If I can build this, that will be where she can go and have a community around her. That is my goal. It will benefit her peers in the same boat. It's overwhelming to think about but I have 6 years to do it.<br />
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I haven't written much because I am struggling between work/life balance and have an injury to my hip that is not resolved. I am not sleeping well from being in pain all the time. I hope to resolve that too in the coming months. 2018 is a year about getting back in balance and finding time to do more than just work. That may sound counter to the work at hand I outlined above, and maybe it is, but there has to be a way. It may just have to go a little more slowly than I am used to. It's funny how all the skills I learned in my twenties (exercise, nutrition, mindfulness, creating spaces that feel good and support healthy creativity, etc.) are all so important now but due to lack of time are much more difficult to implement. Change starts in small steps and innovation comes from a million subversive acts - meaning shaking up the status quo. I find myself at such a juncture where something's got to change to make this journey more sustainable. I will keep you posted. To the lovely person "anonymous" who wrote recently, thanks for your kind thoughts. I hope all of you out there with similar challenges are finding some ease in 2018.<br />
xo<br />
Kathryn<br />
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com4tag:blogger.com,1999:blog-31461418.post-56674997479535525802016-12-29T19:03:00.000-05:002016-12-31T09:43:23.988-05:00Happy New Year!<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">New Year's Eve 2015: Ellie and Mama and Serafina</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">Hi Everyone,</span><br />
<br />
<span style="font-family: "trebuchet ms" , sans-serif;">As usual I have been meaning to write for some time now. Life has been a sleep deprived whir since Ellie had her surgery two summers ago. She turned 14 this last November 9th. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I feel like we are on the downhill slide toward the day when she is 22 and can no longer go to her amazing school. This is where I have to bring myself back to the present - take a deep breath and get back to describing the past year. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: "trebuchet ms" , sans-serif;">Her feet have stayed walkable for the past two years and she is just back in her stander now after having another surgery to get the pins out this Fall. You can read about her first surgery here by scrolling down a bit. We did it to stop her hips from popping out and to correct her clubbed (due to her CP) feet. This fall we had to get the pins out. As you can see by the picture it was a ton of hardware in her tiny frame.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">The titanium they took out of Ellie this Fall</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">The pins coming out wasn't supposed to be the big deal it was but they also lengthened her ham strings. So it was another big surgery for her one year after the initial one. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><b>The recovery</b> included her being in a wedge and knee immobilizers 24/7 for 8 weeks she didn't sleep through the night for about 2 months after the surgery or maybe three. It's been so long since she consistently slept through the night I have lost count. When she was in the wedge, she had to change position and was uncomfortable in the knee immobilizers so she was pinned down. Then she was weak and couldn't roll over. I can't blame her. Dave and I take turns getting up but I can feel that we are not as young as we used to be and I haven't totally healed from the two surgeries I had a year ago either. It was a tiring year where we accomplished a lot that I haven't had time to write about. Still, I won't be sorry to see the back of 2016.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Ellie in Knee Immobilizers as Tay Tay</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;"></span><span style="font-family: "trebuchet ms" , sans-serif;">I am glad we did the surgeries for Ellie. There is a lot of hesitation to do interventions for good reason when you have a kid with CP. Doctors always want to cut. So parents have to be very cautious on what to do and get second and third opinions. Standing is important to keep the internal organs healthy and to build bone. Hips popping out of sockets because of the neurons continually firing in the muscles so much that it pulls her bones out of alignment is not good. I can see her CP pulling her right foot in a</span><span style="font-family: "trebuchet ms" , sans-serif;">gain which is a bummer but not unexpected. However, the relentlessness that is high tone is like holding back a flood - it's persistent and due to her brain injury at birth. I wish I could fix that versus the many sequelae you have read about in this blog.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Ellie and Donaveil</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">Ellie is doing well despite all and I think is far more resilient than me. She just got back from our trip to Disney World. We went there to celebrate her entry into the teen years. She wasn't able to do it last fall because of the surgery so we are a year late. Then she had one week of school where she got to share the experience with teachers and classmates to much ado! She's now having a staycation over the Christmas and New Year holiday, and I think, quite happy for it. A big accomplishment is that she just got cleared for an electronic wheelchair! We ordered it a month ago so it will arrive in several weeks. She's getting her own wheels! We are excited but also think, in fairness, she may use it mostly at school at first. These things are like little tanks that don't take well to the presence of walls or narrower doorways. The wide smooth hallways of the school will be the practice ground initially. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">For the first time ever, she says consistently that she loves school. She doesn't complain every morning like she used to. She's with a class of other middle school girls who can walk or use electronic wheelchairs and talk. They are pulling her forward and out of her shell. It's exciting to see her doing more and being more outgoing. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Fairy GM's Fav song is also Shake It Off!</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;"><b>Disney</b>: From a disability perspective, Disney, quite simply, rocks it. We stayed at the Bay </span><span style="font-family: "trebuchet ms" , sans-serif;">Lake Tower on the monorail and it was excellent. Everything was accessible. There were even lift chairs into the pools and the hot tub. The staff was great and accommodating. They even rushed to put ramps down on and off the monorail and there were tie ons and a lift on to the massive Disney bus that got us from the airpot. They schlepped our luggage from the airport to our hotel which was a welcome relief. Our room had wide doorways and accommodated her wheelchair just fine. There was space for her to dance and a full kitchen for us to make her food with a view of Cinderella's Castle and the fireworks each night. It was quite seriously - magical.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">The Magic Kingdom and Epcot were 99 percent accessible. There was only one ride we noticed that was not accessible (Swiss Family Robinson). The operators of the rides were really sweet and the would let Ellie go twice if she wanted to. They spoke to her first not us which was an impressive demonstration of sensitivity to difference around disability. Many of the rides we could just role her on to. Definitely get the disabilities Fast Pass. You can get it right at the Magic Kingdom's town hall right past the main entrance for no cost. It's worth it. We also worked with Heather at Mousekatours who did all the heavy lifting for us at no charge in terms of booking. Thank you Heather!</span><span style="font-family: "trebuchet ms" , sans-serif;"></span><br />
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<tr><td class="tr-caption" style="text-align: center;">Ellie right after the BB Boutique - feeling fine</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">Best of all from a care perspective, is the fact that each park has a medical building where there are small rooms with a bed like you find in a doctor's office where we could change her. They have a medical staff too who I am sure would have helped me transfer her had I been on my own. This made all the difference. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Another key finding was that everything, everywhere was cleaner than clean. That part I was really happy about. Happiest place on earth after all!</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Ellie got to go to the Bibbidy Bobbidy Boutique and her Fairy Godmother In Training, Samantha (the </span><span style="font-family: "trebuchet ms" , sans-serif;">training takes 1,000 years don't ya know), gave her purple and blue hair extensions and a fancy doo. Ellie unbelievably let her do her nails and make up - both firsts. Samantha said to Ellie, "Put your hand up on my arm." Ellie did it and let her paint her nails like she did this every day. Ellie has a history of being very sensory averse and fearful of new things. She doesn't like others to touch her hands - especially strangers. But she did this all no problem. There was some surreptitious weeping to be sure from two members of our party who shall not be named. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">She explored the park and each ride we took her on with wide eyes and smiles and laughs. It was amazing to see. She particularly loved the Haunted Mansion, the Tea Cups and the Magic Carpet rides. She also loved it when Disney staff members passing by would say "Good morning Princess!" We have called Ellie 'Princess Ellie' since she was little. So for the park staff to say that brought a look of surprise then happiness to her face, as if to say, hey they really know me!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Ellie on the Magic Carpets with Dave</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;"></span><span style="font-family: "trebuchet ms" , sans-serif;">We went to a character dinner where she met Mickey, her favorite, and his gang. She had them all doing the hot dog dance with her. She also slept through each night expect the first one. All told it was a wonderful trip. Her Nannie Bernie and her best friend Tori came along which was a help to us and made the whole thing very festive and fun. Dave and I got a night out on our own. We went December 9-14 which is an off season. Every part of Disney was kitted out for Christmas and beautiful. However, there were still crowds. I would never, EVER go there during one of their more crowded periods. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">The year ahead is about getting Ellie to feed herself. She is apparently doing this with little assistance at school though she refuses to try at home...ahem. As parents we need to push her on this one. Other goals are to get her using her voice more and to continue to build strength. We are bringing her to extra PT outside of school and I want to do some yoga with her and more weight bearing. She is still growing a bit but I don't suspect she will grow much more. I wanted her to get to 5 feet because she would be able to get into adult sizes and by sizes I mean not only clothes but seats, etc. She's not quite there but as her very loved Pediatrician Dr. C. noted, she is finally on the very bottom of the growth curve for her age after a long hiatus below it. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">A sketch for a painting I am working on of Ellie</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">As a working mom and all the other things I am the year for me is about trying to get some down time and do the things that make me, me. The drawing here is an example of how I am trying to get in tune with myself. It's amazing how time goes so fast when you are taking care of someone else. I take care of others in my work too as a teacher and head of a department. I take care of my consulting clients too. It's my job, I love it. Because that is the nature of my work, however, it's really easy to forget about taking care of me. What that looks like is me not noticing my own health in a way that has to change. I have an art degree and love to draw and paint but because those activities are not tied to helping Ellie or Dave or making money, I hardly ever do them. Because I took on a larger role at my job it's been hard to find time to exercise. I have some sort of hyper sense of responsibility to others which is good but self care is critical. I am in this life for the long haul. Not writing in this blog is symptomatic of this - a renewal mechanism sitting there unused. I am trying to change that. Otherwise it's just this endless cycle of output with no input to refuel. My wish for you is that you find your own pathways to renewal this year if you find yourself in need of them. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Happy New Year from me, Dave and Princess Ellie! xoxoxo</span><br />
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com3tag:blogger.com,1999:blog-31461418.post-48963750876919724102016-05-25T20:52:00.002-04:002016-05-26T15:11:10.366-04:00DJ Ellie! Ellie starts a Sound Cloud channel<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">DJ Ellie</td></tr>
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Hi Everyone,<br />
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It's been awhile as it's been a hard year for us as a family. But that is the content for another post. Suffice to say we are all doing much better and looking happily toward summer holidays.<br />
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The BIG news is that after Ellie's most recent IEP we started to think about what Ellie will do after school. Though I would give my eye teeth if Ellie could stand and do any kind of work in the community (which you never know - she may some day) right now that is not realistic with her CP as it is. I was asking what about more school for her and found that there are college programs that support people with special needs but they seem to support only those with the cognitive abilities to handle college level work. Ellie is not there at 13 and I am not sure she will be at 21 when her school ends.<br />
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The issue I have with school ending for her at 21 is that she is delayed - so instead of acting like my 13 year old niece she acts in some ways like her (wanting to chill on her own and rolling her eyes when I kiss her on the top of her head in front of her carers - so not cool mom!) but in most other ways she is younger.<br />
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Also, she has had a hard time as a little kid (see this blog) with medical issues that landed her in hospitals and feeling poorly versus being in school and feeling good enough physically to really engage. She hasn't put in even close to the hours in school in terms of attendance as a typical kid her age. On top of that she has been slowly recovering from a traumatic brain injury. And she is still recovering in many ways. She got her hearing back which was GREAT! She continues to make progress forward in every way. My wish is that she could continue to get help to learn into her 20s. That doesn't exist right now. One day I may have to start a school for her and others who have aged out of their school districts at age 22. I digress.<br />
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In all this thinking about this and what she would do after school I realized there is something - two things actually - that she already said she wants to do. One is make music. The other is be a toy tester. A friend told us you can write to toy companies to offer to test their toys. I will be doing that this summer and will report back.<br />
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On the make music front we decided to get her involved in doing that now. Dave has recording equipment because he writes songs and sings and he has the tech savvy to teach Ellie how to edit down music. Six Sundays ago we asked Ellie if she would like to make songs for other kids to listen to. She signed quickly YES!<br />
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<tr><td class="tr-caption" style="text-align: center;">Dave with Ellie using the MPC</td></tr>
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Now every Sunday at 9am Dave and Ellie and I sit down and Ellie creates a song with our help. Ellie is the composer or <i>the talent</i>, Dave is the production tech and I am the producer. First we ask her what she wants to use to make the song with - namely her toys and a Music Production Controller (MPC) that has all these great rifs on it (See the Mothers Day song) and her voice output device and her Fijits - of course. <br />
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She creates a couple of tracks. Then Dave works with her to edit them, e.g., "Ellie do you want to make this part repeat or stretch out?" Ellie choses. I hang around to help with the making of choices and to ensure the pace accommodates Ellie. ;-) We need to figure out how to help her drag and drop the bits of song on to one track. We are still figuring out how to adapt the tech.<br />
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She is into it. She pays attention for the whole hour or so it takes. There is no complaining or anything. I think she is quite happy with her Sound Cloud channel where we upload the songs. I need to figure out how to get them on iTunes - which might be the start of her school fund!<br />
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I thought I would share this new development with all of you. Here is the link to Ellie's Sound Cloud site if you want to hear her music! <a href="https://soundcloud.com/user-422046570/" target="_blank">Elle Belle on Sound Cloud</a><br />
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If you are so inclined leave a comment which will make Ellie's day.<br />
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P.S. My favorite song is "Happy Mothers Day" ;-)<br />
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com5tag:blogger.com,1999:blog-31461418.post-12914669218649113242015-11-11T13:40:00.001-05:002015-11-11T13:42:10.220-05:00Happy 13th Birthday Princess Ellie!<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">Ellie on her 13th Birthday, November 9</td></tr>
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13<br />
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<span style="font-size: large;">13</span><br />
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<span style="font-size: x-large;">13!</span><br />
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<span style="font-size: small;">How do I tell you about 13?</span><br />
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<span style="font-size: small;">For the first time this year Ellie let us sing Happy Birthday to her and actually did a happy dance along with it. Then we sang the Hooray for Ellie song I made up years ago. This is a big deal in that Ellie has been abhorrent to others singing to her in large groups for a long time. It's a processing issue that I think is getting much, much better. What's also gotten better is her vision. She no longer needs glasses. So my kid I brought home diagnosed deaf and legally blind from the NICU 13 years ago hears just fine and no longer needs glasses. All signs of the brain's plasticity. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Ellie got a certificate of merit for being independent!</td></tr>
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<span style="font-size: small;">Ellie is still leading me. Lately she has been listening to the anthems of modern day teeny-boppers: Taylor Swift, etc. She loves composting her own songs and "DJ" music to dance too. She told me she wants to be a composer and a toy tester when she grows up. Heck, she really could be a toy tester now. The manufacturers would really find any flaws in their design. Ellie learns the whole toy inside in out by playing with it and finds any flaws and calls them out to us. And if the toy isn't working right in even minute ways she let's us know. She's got great concentration about how things work and patterns, etc. Her memory has always been good but if you watch her play you can really see how she learns and categorizes and figures out how things work.</span><br />
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<span style="font-size: small;">Age appropriately, she gives me the equivalent to the eye role when her younger personal care attendants are hanging with her. This year I should have gotten her a Keep Out sign for her door. Go Ellie! ;-)</span><br />
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<span style="font-size: small;">I am glad for her growing independence and lessening sensory integration issues. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeoMsLOvEUNCBXuTJ590l4pPbn4IrMzACq7GY2mkZJrogViOPi5_TpwY4lE-kSo7tesCTaz23N69WKQxRp08f4WAIPUUIevvHgh2KBfM8Z1HiKBVb2QqEV_smbP4_kWinUBPr5CQ/s1600/IMG_4836.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeoMsLOvEUNCBXuTJ590l4pPbn4IrMzACq7GY2mkZJrogViOPi5_TpwY4lE-kSo7tesCTaz23N69WKQxRp08f4WAIPUUIevvHgh2KBfM8Z1HiKBVb2QqEV_smbP4_kWinUBPr5CQ/s320/IMG_4836.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy Dance in celebrating her 13th ;-)</td></tr>
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<span style="font-size: small;">For those of you who asked about her orthopedic surgery, she is doing well. She has not yet regained her full range especially in terms of sitting criss-crossed. But she's getting there. I need to set her up with more PT and get her in the pool more too. So that is coming. However, we achieved our goal. She has lovely flat feet that allow her to get in her stander every day and stretch those legs and un-squish her organs, build muscle and bone. Our first post op visit included the doctors admiring their work but also commenting how her tone has kicked right back in. Cerebral Palsy - the gift that keeps on giving (sarcasm here). Her hip is no longer rocking in and out of the joint socket. </span><span style="font-size: small;">We have Ellie in her AFO's 22 hours a day.
She is able to sleep with them on. She has two sets - the night ones
have more padding. We are committed to keeping her feet in working order
so she can stand. We are ready to begin with a gait trainer again so
am organizing that. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrXZaf9SCSiKY5Qn-prkNJCFqUf41OzoGT3DcpDkfvKOXvUMKMycn0nML-NdPiKhuc9MGaQFYBfhC_MaF-_LhRsPA1dXaNUOZ91MGCW_V3swS3NlXPhvj8r_ViRsY-gq1kOUrZlg/s1600/IMG_4845.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrXZaf9SCSiKY5Qn-prkNJCFqUf41OzoGT3DcpDkfvKOXvUMKMycn0nML-NdPiKhuc9MGaQFYBfhC_MaF-_LhRsPA1dXaNUOZ91MGCW_V3swS3NlXPhvj8r_ViRsY-gq1kOUrZlg/s320/IMG_4845.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cool hat made by Auntie Chris</td></tr>
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<span style="font-size: small;">She is sleeping about 50% through the night but remains an early bird. When do those teenage hormones kick in? Don't all teens prefer a lie in?? Ah well - the good thing is, as I get older getting up at 4:50am does not seem as bad as it once did. When I go into her room and turn on the light that love that bursts my heart is right there. </span><span style="font-size: small;"><span style="font-size: small;">On my mornings (Dave and I take turns) Ellie wants me to sit her up and snuggle with her and make her schedule on her light board for the day. She's still a love bug.</span> </span><br />
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<span style="font-size: small;">A colleague recently suggested that sleep deprivation for parents might be offset by the rush of neurotransmitters like oxytocin and dopamine they get upon seeing and interacting with their child because of the love they feel. She suggested that this does not happen when you pull an all nighter to say, finish a critical paper. I would love to test this and in some of the work I am doing I think I will get that chance so will keep you posted. It's certainly a way to learn about this because as my long time readers know, appealing to the <a href="http://ryntales.blogspot.com/2008/04/caffeine-dreams.html" target="_blank">Gods of No Sleep</a> has been an exercise in futility as they have their own agenda. ;-) </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglmDB5JB_FaUPNRpJyuNcHpXobTEzGxXEhtspSYw8yI0pUnAeKKm4O7RYL7PAXHIzNO-tKjEtBKd4ApN-zvFsgQuE2SrnnFwzSNV_uyNHrX8eE8heYtr7TsqCVCje-gCNiWAcKOw/s1600/IMG_4838.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglmDB5JB_FaUPNRpJyuNcHpXobTEzGxXEhtspSYw8yI0pUnAeKKm4O7RYL7PAXHIzNO-tKjEtBKd4ApN-zvFsgQuE2SrnnFwzSNV_uyNHrX8eE8heYtr7TsqCVCje-gCNiWAcKOw/s320/IMG_4838.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our beautiful girl, our true north.</td></tr>
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<span style="font-size: small;">In other news she is making great progress with her automated wheelchair. She can back up and go straight etc. It's tricky business to get one so that is another route to pursue. I also decided now that she is 13 she has to raise and lower her own bed which has a switch which she has resisted using. I want her to gain more autonomy and it's time to get rid of some of the learned helplessness. No more g-tube. No more clubbed feet. No excuses not to roll, move and gain as much functioning as she can. </span><br />
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<span style="font-size: small;">Things that have not changed: Ellie still loves to laugh and loves music and is adorable and a sweetie - prerequisite teenage sass not withstanding. She's still the soul that anchors me in this world. Happy Birthday my beautiful girl!</span><br />
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com0tag:blogger.com,1999:blog-31461418.post-36321927949332515352015-10-30T12:28:00.001-04:002015-11-11T13:41:19.000-05:00Happy Halloween from Ellie in Wonderland<div dir="ltr" style="text-align: left;" trbidi="on">
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com0tag:blogger.com,1999:blog-31461418.post-63112721809003409252015-07-25T10:38:00.000-04:002015-07-27T10:27:06.721-04:00Enough of the Hero Talk & Working Parents of Special Needs Kids<div dir="ltr" style="text-align: left;" trbidi="on">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDB0vYw68P6uFRx5zswNavib1ztNQxIG-0kankltTghUIoTMt82cuitaS2elamP2XyLzJ5w1wFFC-qox56NfhByPR7CWI10T9SnHvaHq5l6UWC-JBV_H8UonLSjOJ6kj4KrefxFw/s1600/IMG_4556.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDB0vYw68P6uFRx5zswNavib1ztNQxIG-0kankltTghUIoTMt82cuitaS2elamP2XyLzJ5w1wFFC-qox56NfhByPR7CWI10T9SnHvaHq5l6UWC-JBV_H8UonLSjOJ6kj4KrefxFw/s320/IMG_4556.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ellie's left foot and her flexing her toes!</td></tr>
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On July 22nd Dave took Ellie to get her groovy green casts off. And they did come off revealing no skin issues and beautifully elongated and more functional feet. The other amazing thing we are noticing this week is that Ellie is moving her toes more and differently than she was able to before. We went from worrying about feeling being lost in her feet to seeing she has more feeling and more function than before the surgery - which is unexpected and incredible and I am truly grateful for this happy surprise. You can use her flexing her whole foot here which she was not able to do before.<br />
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Then after letting her feet dry out and checking her many sutures they put casts right back on. She now has electric pink casts and still has to use the wedge and is on hip precautions until August 10. Ughhhh. Hip precautions means that we can't use her ceiling lift to transport her because the sling it uses makes her bend more than a 90 degree angle at the hip. She is a two person lift. What this means is that Dave or I have to be here to help the nurse or PCA we have on helping us. Did I mention we both work full time?<br />
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There is family medical leave act but neither of us have applied for that. There is a stigma in the working world that gets put on you if you have a child with special needs - at least in my experience. In my own job I was overlooked for a promotion because, and I quote, "We didn't think you would want the position because of your daughter." I applied anyway and got the job. But it was a bummer not to be asked by the leadership team to apply when everyone else around me who knew of my work was saying, why don't they just offer the spot to you? Well they didn't because I will always be that woman with the daughter with special needs.<br />
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So it goes.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDT-Etglne0F-UoK6DaqAPw45Cr3fYeQRqeITBU3fChKDMROO5_RGoZLOnRzcM89NhCLeK-0PxJstzpRifhWMDKloFv0FTs5kqBm5sdYbBEiAdp3Hme79USHNEKSGw6yMwL1QuPQ/s1600/IMG_4552.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDT-Etglne0F-UoK6DaqAPw45Cr3fYeQRqeITBU3fChKDMROO5_RGoZLOnRzcM89NhCLeK-0PxJstzpRifhWMDKloFv0FTs5kqBm5sdYbBEiAdp3Hme79USHNEKSGw6yMwL1QuPQ/s320/IMG_4552.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">New AFO mold at neutral. </td></tr>
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And I realize I am writing this juxtaposed to just sharing that we do have this issues with lifting her. Which means I will need to work from home when Dave is out of town. He can work from home because his employer allows that for everyone. What this looks like is every two to three hours the nurse will say, "Hey can you come help me do a lift?" He or I say, "Sure." Get up from our desk, walk down stairs to Ellie's room, help the nurse transport her into her bed from her chair, then go back up stairs. The whole process takes less than 2 minutes which is less time then it takes to get a cup of coffee or use the restroom. In fact, getting up from one's desk every hour to stretch your legs takes more time. The work effectiveness impact is minimal. There are many studies that show that working parents who have flexibility at work to say work from home, work harder and are more loyal to their employer than other employees.<br />
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My question is: How is this scenario different from a parent of a typical kid who is home sick? Or a professional who has to leave work early to take care of an elderly parent? Or the worker who goes on 15 minute coffee or smoke breaks? (Other than the fact that our helping to lift Ellie takes far less time than a coffee break.) We all have times when our work is impinged upon by family matters. Why is this so different? After August 10th this two person lift issue will go away.<br />
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The other thing I have been hearing a lot is that, "You are a hero!" People inquire as to how Ellie is doing and I tell them then they say it, "Well, you're a hero."<br />
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I feel bad every time people say that and they are saying it a lot. It makes me feel uncomfortable. It makes me cringe. It is so isolating. It screams - you are so different from me. Your situation is so beyond everything that I will put you in this unique category over here where I can keep you at arms length. And it also says, your situation is so horrible you'd have to be a hero to deal with it.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2XK0JD7AYJWMx-x9LLWLhId5r12kXYy14ifWJjgGpE68WZHgYgU44EM9enlkXVgFXSM2o-DT6BGIKa_Uo2JIMO_FAk_n3b2V19JBYZupiNULww4mADhFQn_cjLP1ki-guKJ3gCw/s1600/IMG_4553.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2XK0JD7AYJWMx-x9LLWLhId5r12kXYy14ifWJjgGpE68WZHgYgU44EM9enlkXVgFXSM2o-DT6BGIKa_Uo2JIMO_FAk_n3b2V19JBYZupiNULww4mADhFQn_cjLP1ki-guKJ3gCw/s320/IMG_4553.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ellie's right foot, the most impacted by her CP.</td></tr>
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I realize it's not meant to say any of that. The people saying it truly care and are concerned for us. But all that the sentiment implies is wrong. My standard response back is, "You would do the same thing - you really would if it were your child." And really, wouldn't you? If you love a person you take care of them. It's that simple. No heroics needed. You just do what you have to do as best you can. <br />
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The other thing these comments imply is that Ellie is hard to love. This of course is ridiculous. She's such a great kid and a sweetie pie and funny and yes she's having a rough time now but is handling it really, really well considering. I would go out of my mind if I had to sit there with a wedge between my casted legs for months. I, in fact did have braces on my legs like that as a toddler, and remember bashing a big hole in the wall by my crib with the screw that held them on as I swung my legs back and forth out of pure boredom and pent up energy. Ellie can't swing her legs so she is essentially pinned in one position until someone else helps her move.<br />
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I know the hero label is meant as a compliment. And maybe I reject it so much in part as a knee jerk reaction from playground trauma that happens with girls in childhood. You know the one where one girls says, "You look good or you have pretty hair" And if you say, "Ya I do" or even imply that you agree them in the slightest you are ostracized. You learn very early the only correct response is to say, "No way, I don't look good or my hair sucks, it's so frizzy"<br />
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I know this is part of the cringe factor I feel when other women tell me I'm a hero and it's not because I think I am, it's because of the issue with labels and who is good and who isn't BS. However, it's the arms length, let's set you apart thing, that bugs me more as well as the idea that taking care of your own kid through an injury (in our case TBI) is a heroic act in a world where many people are dealing with much harder things.<br />
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I think we should just leave the hero talk out of it. If I pull someone from a burning building or discover the cure for cancer or find the answer to world peace or a way to heal injured neurons - then talk to me about being a hero. And then I may say, "That's right!"<br />
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But parenting my own child, isn't that a given? In fact if I don't do that well then aren't I negligent or even criminal? Dave and I are hard working to be sure but so are <b>all</b> good parents. If you are doing it right then you are working hard. The hero wall has to come down though. There are more similarities than differences after all between the typical world and the special needs world if we are only brave enough to look for them.<br />
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com2tag:blogger.com,1999:blog-31461418.post-6270298063420011592015-07-07T14:05:00.002-04:002015-07-07T21:01:17.738-04:00Sleep Deprivation and Resilience<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">This chair if really helping thanks to Liz! </td></tr>
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<span style="font-family: "Trebuchet MS",sans-serif;"> Ellie continues to improve every day. The casts on both feet, knee immobilizers and wedge remain until July 22nd at which point we hope the casts will come off but not sure about the rest. I think Ellie thought that once she got home the knee immobilizers and wedge would come off. She's made it clear she hates them as they really, really restrict her movement - which is the point. She is coping with that and the pain really well. Liz brought over this Lazy Boy recliner and it has been a wonderful thing to have. It's heavily padded and gets Ellie out of the bed. Though in this picture you can see she has had enough. It's a hard thing and bummer of a way to spend the summer. I have had to be pretty firm about making sure she eats and drinks. She's so out of sorts in every way it's been hard to get back into any sort of routine. As a result there has been very little rest for any of us. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Her circadian rhythm is also flipped. She has been up all night and uncomfortable despite the pain meds since she got home on Friday. This is hard for us. In fact one of the hardest ongoing things about raising Ellie has been her inability to sleep through the night. I just ordered this <a href="http://www.amazon.com/Verilux-VT20WW1-HappyLight-Intensity-Interchangeable/dp/B0094HBU6I/ref=sr_1_fkmr2_1?ie=UTF8&qid=1436275862&sr=8-1-fkmr2&keywords=seasonal+effectiveness+disorder+light" target="_blank">light</a> to help maybe flip her back to a proper rhythm. Let's hope it works. I had hoped that approaching puberty she would start to sleep more like any good teenager - but not yet. Still she is only 12. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">She's also on some heavy pain meds that are messing with her sleep. We are stretching to dose from every four hours to every six today and it seems to be working. It feels like a long road ahead. My friends in my book club have been dropping by meals each evening for two evenings now. That really helps and is so lovely since we don't have any family who support us in the day to day. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">A note about positioning: Here you can see her on her side. Her body has to stay aligned (straight). She has the casts, wedge, and knee immobilizers on. We are using the cloth chuck underneath her to move her and it helps. Then using pillows and bolsters to help her stay positioned. We switch back and forth to the other side as well as sitting when ever she wants or at least ever two hours. At night she can't seem to get comfortable regardless. We keep trying. Part of the it to state the obvious is that she just had her bones operated on and bones take a long, long time to heal. So it goes. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "Trebuchet MS",sans-serif;">Careful positioning keeps Ellie aligned and comfortable.</span></td></tr>
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<span style="font-family: "Trebuchet MS",sans-serif;">I keep wondering if I wrap my head around this differently I might feel better about the lack of sleep and the stress of it all. Maybe if I was just more chill? One problem is that it's bad right now and a part of my brain goes to the place where it says - it's going to be this way forever. </span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">When I go there I get instantly overwhelmed. And of course, it's not true. The one thing you can always count on -the one constant in life - is change. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">It's a challenge - this management of the self. It's a challenge not to think of how life could be different. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I have been inspired lately by <a href="https://www.youtube.com/user/caseyneistat" target="_blank">this guy </a>who exemplifies what a zest for life means. Watching him jump into life's challenges every day give me energy to "Do more and work harder" as Casey would say. And we do work hard but focusing those efforts on the right things at the right time is the key. Part of that work is keeping focused, positive, and present. </span></div>
<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com0tag:blogger.com,1999:blog-31461418.post-63277660517642876532015-06-28T08:44:00.000-04:002015-06-28T12:12:59.544-04:00Hello Walkable Feet<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">Ellie asleep yesterday evening.</td></tr>
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Ellie is resting now and we have a long road ahead of us. She has casts from the knee down to toes on both legs. Within those casts are feet at neutral and straight if not pointing out slightly (which is good because her tone pulls them in). She has flat feet! I don't mean that in the can't get into the army way and I can't see if she has a proper arch. But she no longer has feet twisted to the side that don't allow her to stand. It's a wonder to see and a good thing as I have discussed in my last post.<br />
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She also has a foam wedge between her knees and knee immobilizers. It's going to be a very long recovery. Right now she has an epidural block in so she can't feel her hips and pelvis. This is a godsend. I worry about the pain after that. There's a whole team devoted to her pain management and so far they have been doing great.<br />
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Ellie's a bit out of it and uncomfortable - but sleeping intermittently. She needed a blood transfusion but since she got it her color is a lot better and when she is awake she has more energy.<br />
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So far so good.<br />
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Amazingly we got assigned a private room so it's quiet which suites Ellie very well as she is such a light sleeper. It's a small reprieve. And of course, it's raining. It rained the day Ellie was born - back in the days when it still rained in Los Angeles. It rained when she had her brain bleed. It rained when she got ventriculitus when she was still in the NICU.<br />
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As we were driving in yesterday it rained too and Dave commented on it.<br />
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I love rain and am trying not to see it as a sinister thing. Maybe it's more of a symbol of healing for Ellie? Maybe it's a way to soften the sharp edges around her? Maybe it's just rain.<br />
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I totally see how superstitions start.<br />
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Despite the rain, Ellie survived these many surgeries within a surgery. We will be able to let her stand and in doing so let her organs stretch and breath and allow her body to build bone and muscle. Because we went through this, ensuring that the pain is worth the gains that these interventions allow is critical.<br />
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com3tag:blogger.com,1999:blog-31461418.post-76584328530026848132015-06-26T11:01:00.000-04:002015-06-26T11:33:36.340-04:00Surgery Day<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgd_KxgS0VmKW3rZBKOFHFzFly2y5FeG2sYkRwYOM06aWehyphenhyphent8MZGhykx0wbtGJr1W3YR39fTKuM3XS8yVWm-cM8yey1ql0u1kJe1ENLRWb8V4wxEsAMS_Prj9jlfV-MZ8aW_jY-g/s1600/IMG_4466.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgd_KxgS0VmKW3rZBKOFHFzFly2y5FeG2sYkRwYOM06aWehyphenhyphent8MZGhykx0wbtGJr1W3YR39fTKuM3XS8yVWm-cM8yey1ql0u1kJe1ENLRWb8V4wxEsAMS_Prj9jlfV-MZ8aW_jY-g/s320/IMG_4466.jpg" width="240" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Trebuchet MS, sans-serif; font-size: small;">Ellie got the "Independence" Award at school!</span></td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">It's a waiting game right now. Ellie is in surgery and will be for the next 9 hours. They got the PIC line in and the A-line and the epidural and the surgeon just made the main incision for her pelvic osteotomy. I asked my Facebook friends to send good thoughts, and whether you agree with our choice to do this or not, please send love and good thoughts to Ellie.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">She has a long road ahead of her but I believe it's one that leads to better quality of life than what she has now AND ensures that her body will be the healthiest possible so she can have a long life.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Central Question</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The big question that has been on my mind in preparing for this surgery is how to manage our energies as parents. I managed other big questions for Ellie like how to get her to gain weight so that she would have more reserves and she did gain 4 pounds! Go team Ellie! Dave and I both managed all the other agonizing choices and decisions to make leading up to today.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">In the past Dave and I have not been good about managing our own energies. Recently, in an episode of "Naked and Afraid" (disclaimer: yes this is a guilty pleasure, and yes, only in America, and no it is not porn) a pair of survivors were just at each other psychically the whole time - jealously weighing who was doing the most work, obsessing whether or not the other would come through with key needs and basically circling each other in the death grip of two drowning people. Finally one tapped out and the other - who was so dysfunctional in the presence of their partner - suddenly became very functional.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Some times Dave and I are like that - not that bad or course - but this dynamic exists in a subtle way - and we just exhaust ourselves in the process which is good for no one - especially Ellie.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The way I have seen us in this dynamic in the past is around how we manage Ellie's hospital time. Typically we both stay by her side for 12 hours and then one of us will stay with her in the hospital over night and the other will go home very late and come back very early then we both stay for 12 more hours and the other one will go home for the night but get back very early. In short, no one gets any rest and we burn out and get cranky and don't have as much brain power to make choices for Ellie because we are so tired.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Last year a friend had to do a similar surgery to what Ellie is going through today and her mom and dad handled the hospital time totally differently. In fact we went in one night and brought the dad some reading material and a beer. He was obviously strained because his child was in pain. But he was also in the flow of it and as such emitted a very calming energy. He was present for his daughter and somewhat rested. Mom was home with the other kids and visited every day but was rested too. After their hospital stay of a week Dad, who stayed at the hospital the whole time with his daughter, had to travel to another country for work and mom took over. And she had the reserves to do so because they had managed their energies so well.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Their easy sharing of the responsibility did not leave them as exhausted as they might have been had they practiced the joined at the hip way Dave and I have managed this in the past. It was still hard but as well managed as it could be.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This time Dave and I are taking longer shifts and giving the other a break in between to catch up on rest. One of us will still be by Ellie's side at all times. Don't get me wrong. We would never leave her in any hospital alone -<b> ever. </b></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">But Dave was up </span><span style="font-family: 'Trebuchet MS', sans-serif;">last night</span><span style="font-family: 'Trebuchet MS', sans-serif;"> with Ellie who, understandably, did not sleep well. She never sleeps well but last night it was particularly bad. And then we were all up by 5am to get out the door to get to the hospital by 6am. I was up in the middle of the night with her the night before. The Gods of No Sleep have returned and been camping out with us for a solid 2 years after a year off. Damn them!</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Trebuchet MS, sans-serif; font-size: small;">Flying Hearts</span></td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">Once Ellie was in surgery we waited for the first update and then I sent Dave home to go to sleep. He is taking the first night tonight and as we were awaiting the first update he looked exhausted. I'm glad he's gone home to rest.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When something like this happens, a child is ill or injured or maintains a life long disability, 95% of couples split. I can see why because for us anyway, Ellie became our central concern. We have to remember to also take care of each other - and in the past we have not been good at that and we were younger and had more energy.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Dave will come back toward the end of the time of her surgery late this afternoon and then, once they are settled in a room and if Ellie is ok, I'll go home and come back mid-day tomorrow and stay for two days while he goes home and rests. He will visit of course but only for a couple of hours versus 12 hours. In the mean time I hope he sleeps in, rides his bike, and rests and rest and relaxes and eats well and hydrates. And then he will take the next two day stint I will try to do the same. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When Ellie gets home we are not going to have help caring for her 24/7. I anticipate some very long nights. We will be vigilantly trying to keep ahead of her pain. All her care will be that much more difficult because of her pain, casts, knee immobilizers and wedge. It will be harder to feed her. And this will go on for weeks and we will be balancing this with full time jobs. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">If we exhaust ourselves here - while we have help - we will be all the more tired when she gets home. I want to avoid that. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">In truth - maybe the central question really is - how do we survive this experience of raising Ellie and care for each other too? Maybe in trying to do both we will find not only more grace but more joie de vivre?</span><br />
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com0tag:blogger.com,1999:blog-31461418.post-48848190511537398902015-05-12T20:19:00.001-04:002015-05-12T21:26:50.214-04:00Orthopedic Summer<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Trebuchet MS, sans-serif;">Hi Everyone,</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Thank you to those of you who have written to thank me for sharing our story and to say that in that sharing you found some hidden strength and hope. Hope is a powerful thing after all and it is what keeps me going through the darkest times. It motivates me to action.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Ellie having a foot soak.</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">When Ellie was born they told us she may not make it through the next few hours, then the night, then the week. After she survived for two months they told us that we should sign a DNR because she had diffuse PVL and that she would be severely impaired. Horrifying to be sure that they would suggest doing a DNR on a kid who needed suctioning so she would not drown on her own secretions. After that we were afraid to leave the NICU at all in fear that they wouldn't work hard enough to save her. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">However, the NICU nurses never gave us that impression that Ellie wasn't worth saving - just the opposite. It was specifically two doctors who did the test for PVL that frightened us so much we just decided to always have one of us on watch. We were already putting in very long days there but after that we would only leave once in a while when a particularly trusted nurse was on. But if there was a respiratory therapist we didn't trust we would stay all night and all day. That was our life for 134 days. I don't know if it was necessary but the protective instincts we had as new parents were very strong and are still in high gear today. I don't think we will ever get over how intensely protective we feel toward Ellie. I am sure it's the same with any parent. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">During Ellie's infancy and toddlerhood I was also afraid of what our future would be. What if Ellie were severely impaired? What would that look like? Would I be able to handle it?</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">These were big questions. And they were on the table for a really, really long time. When she was so little it was hard to know if she would keep progressing or would she stay in the baby stage forever, for example. They told us that we had to make huge progress with her before she was 5 because her development would taper off. And it is true that there is rapid brain development from infancy through toddlerhood. But the brain is constantly re-arranging and adapting based on the needs of its environment. This is why it's so important to bring the world to your kid if they can't access it themselves. Stimulate your child is what we heard and we did as you can see a little bit of by reading here. And it really did help. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">However, in some ways I think that Ellie's foot and leg issues were determined from the moment her brain was injured. In fact her PT/OT in the NICU called it - she said Ellie's feet would always be her hardest problem. And so they are. But just the same all the work we did Ellie and all the work they do with her now in school helps - it keeps Ellie's brain developing and her life unfolding. Is she at a different pace than other twelve year olds? Yes - totally. And that is a bummer in many ways. Don't get me wrong - I wish this had never happened to her or us. It is not glamorous and it's a lot of hard work all the time with lots of constraints I never expected to face. However, the grass could look greener from anyone's perspective. But she is doing great considering what she has lived through and the challenges she was presented with from her early birth - yes - fantastic and thank God. It could be worse and I am thankful every day that I get to have her in my life. That is one thing I don't take for granted - ever. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Now that she is twelve we are facing caring for her has her high tone pulls her legs and feet into knots as her bones grow.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">That is why this summer on June 26th Ellie is having a pelvic osteotomy, hip osteotomies, Achilles tendon lengthenings, ham string lengthenings and the bones rearranged along with the muscles in her feet to treat her now clubbed feet. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The surgery is meant to take roughly 9 hours and she will then be in a hip to toe cast for 3 or more weeks. It will be a long recovery after that with loads of physical therapy needed. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Ellie Belly checking out the fish at age 4</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">The consequences of not doing this is that she won't be able to stand much so that her organs will get scrunched which is life threatening. And her hips will start to come out of their sockets regularly - which is hugely painful. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Once again, as with all of medicine, we are making a choice between two evils. We make the most informed choice we can and move on. </span><span style="font-family: 'Trebuchet MS', sans-serif;">And to answer the unspoken question - yes she wears AFO's every day and her feet still became clubbed. Yes we have tried Botox many times and the last time to no effect. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span><span style="font-family: Trebuchet MS, sans-serif;">With this big surgery ahead of us once again I have to rely on hope - hope that I am making the right choice. Even though we have spoken to four doctors about this and have seen the obvious issues on her x-rays - I still have to hope that we are doing the right thing because you don't know sometimes until you do. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">There is that expression: Have faith in God but tie up your camel. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It's exactly like that - I have hope but do my homework and work my butt off to ensure a good outcome. Hope alone isn't enough. So send a prayer along for Ellie on June 26th and the weeks following. There are studies that show when people are prayed for they do better. This is a rough thing Ellie has to face once again. I wish she didn't.</span></div>
<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com6tag:blogger.com,1999:blog-31461418.post-59822582538187635732014-11-10T22:21:00.001-05:002015-03-13T15:39:35.311-04:00Happy Twelfth Birthday Princess Ellie!<div dir="ltr" style="text-align: left;" trbidi="on">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtWUIVBpD2Ur2_YCLPuCgIpId6DTHM2x3ZKEnHs381cl-64inPuZv-9CeZAWReulSUAvYGJACBBUYAaehvvOleiv6_JRBi0U-PITXCD8A5qzqf9WplRcHPgFujOJq0KFSWMNVVlA/s1600/IMG_4005.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtWUIVBpD2Ur2_YCLPuCgIpId6DTHM2x3ZKEnHs381cl-64inPuZv-9CeZAWReulSUAvYGJACBBUYAaehvvOleiv6_JRBi0U-PITXCD8A5qzqf9WplRcHPgFujOJq0KFSWMNVVlA/s1600/IMG_4005.jpg" height="400" width="300" /></a>Ellie turned 12 yesterday. I can hardly believe it. And as a nice birthday gift for mama she transformed again in a way that may seem small but was really telling for us. Each year whenever she gets presents she tends to shun them. We joke and say that all new toys start off as the devil. We have had to slowly introduce them to her by doing things like playing with them ourselves, or leaving them sort of near by in view and every now and then insinuating that they might be lonely.<br />
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Even toys she has come to love and are essential to her, started this way.<br />
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But yesterday this pattern changed. She got a KiddiJamz DJ toy - which Dave found. It's really such an Ellie gift because we noticed how she plays her favorite videos on fast forward then going back, etc. in her own pattern. We also call her "DJ Ellie" because she likes to mix the songs on her toys to fill the house with a music all her own. <br />
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So the KiddiJamz is, on paper, a perfect Ellie gift. However, after years of the initial rejection, I have developed low expectations for her acceptance of new gifts; wisely trying not to get too excited about a certain gift for her. But this year she changed. She took to this toy the minute it was opened.<br />
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This is a picture of her playing with her newly unwrapped toy. She would play with it for a few minutes and then push it away and stare at it. Then she would ask for it again. She did this several times. You can see how delighted Dave is.<br />
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Today she didn't want to stop playing with it to go to sleep and she had already mastered how to record, mix the different genres, record her other toys into her mixes by holding the microphone to them. She has recorded several songs on the little "iPod-like" devise that comes with it! She's incredible and determined and focused. Ha! So this also tells me that, when she refuses to focus on her homework it's not because she can't focus, it's because she doesn't want to. Bring it on Ellie!<br />
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I can't believe she is twelve. Time these days seems to be going by too fast. Ellie has been the healthiest she ever has and has a full life with school and after school activities like soccer and iPad class (yes, there is such thing) and homework. She is spending more time playing on her own and expanding what she can do. We are all changing and Ellie most of all.<br />
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Happy Birthday Princess Ellie!<br />
Love, Mama<br />
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<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com4tag:blogger.com,1999:blog-31461418.post-81483232319980401612014-11-07T10:47:00.000-05:002014-11-10T14:19:30.688-05:00For the beautiful Anastasia: Questions and Answers<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">Ellie at Advance with Doran and Dada</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">Yesterday a father wrote to me with a lot of questions about his beautiful baby girl Anastasia. Rather than respond in private, since many of his questions are things we also asked in those early days, I thought I would answer most of them here. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span><span style="font-family: Trebuchet MS, sans-serif;">Dear J.,</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Thank you for your lovely letter. I am very glad that some small bit of the content here has helped. I remember those early days, and Ellie looked a bit like your Stacey. It's a lot of wondering and worrying about what the future will be. Who will my sweet, beautiful baby become? I also realized at that time, when Ellie was Anastasia's age that, because babies are supposed to be total care, this was the most "normal" our life might ever be: the days when I and Ellie could still pass as just another baby with her mama. <i>(</i></span><span style="font-family: 'Trebuchet MS', sans-serif;"><i>There's some psychology for you. ;-)</i></span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;"><i><br /></i></span>
<span style="font-family: Trebuchet MS, sans-serif;">I also worried, and I have written about this here, that Ellie would transform into someone I could not relate to or connect with. The good news is, that on the eve of her twelfth birthday, that is very far from the case. She is still my beautiful, funny, smart Warrior Princess. She is still making progress; still evolving. But I didn't know that would be the case way back when the doctors used to talk about stalled development, as if the brain ever stops creating neurons in response to the environment. We never believed that Ellie would hit a ceiling, though the doctors would say that and we saw other parents who believed that and then made is so by not stimulating their kids beyond that "ceiling." This is a path I do not recommend. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgskspUxUGLgDre1KUXLg_UXaA8QOlKxlNYAmTe0ERZln2kvDwpzgGKg6oYRLvint3M3nbWCQFU8n-JWvhBtRUZQNeVG72BFJF5_o4qtXXwcYch_UwLxYwuH7H-aae3sBM6LvIRXQ/s1600/IMG_0090.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgskspUxUGLgDre1KUXLg_UXaA8QOlKxlNYAmTe0ERZln2kvDwpzgGKg6oYRLvint3M3nbWCQFU8n-JWvhBtRUZQNeVG72BFJF5_o4qtXXwcYch_UwLxYwuH7H-aae3sBM6LvIRXQ/s1600/IMG_0090.JPG" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ellie signing Hi!</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">The brain above all else, is a dynamic system all its own. It's always evolving. And it takes feedback from the body and external environment to build itself. There is evidence of this in spades in neuroscience studies. The simplest example is of new neurons that developed (as shown in the scans) when a person learns to juggle. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The implication of this for the child with CP, is that if the brain can't make the body do something it's supposed to, because the connection is cut off due to brain injury, it might be possible to wire it up from the outside. Make the body give the brain feedback by motoring the child's limbs, etc. through the motions. We did this on many levels on it worked in getting Ellie to eat and drink. Because of her prematurity and lack of oxygen at birth she arrived with no suck reflex that typical babies have. Then she had a Grade 3 IVH brain bleed on Day 2 of Life that impacted her nervous system leaving her upper body hypotonic or floppy and her lower body hypertonic or spastic. The hypotonia in her trunk and head, face and neck meant it was hard for her to move her face. </span><span style="font-family: Trebuchet MS, sans-serif;">She had a mouth full of cotton and weak sphincters. She could not feel all that much, nor control her tongue. So we did facial exercises in her mouth and on her face that we learned in the NICU from the amazing Jean Dolaway. </span><span style="font-family: 'Trebuchet MS', sans-serif;">We worked with a feeding specialist to learn more techniques and exercises beyond the NICU. That was time and money well spent. </span><span style="font-family: Trebuchet MS, sans-serif;">We did them for many years. </span><span style="font-family: 'Trebuchet MS', sans-serif;">She was able to learn to eat and drink after over 10,000 hours of working with her on this. </span><span style="font-family: Trebuchet MS, sans-serif;">We are currently still working with her on drinking. In her case, the input from the outside allowed her brain to build new capacity that was supposed to be a reflex coming into life but was taken out by her rough start. Our stance was to never quit trying to stimulate her - to bring the world to her because she could not go to it. We still do this and it has helped her immeasurably. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">If there is one thing you do, do that. Bring the world to beautiful Stacey.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We brought the world to Ellie by doing these things: </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">1. We talked to her all the time - in a very animated way that resulted in her first sounds and now her very prominent vocalizations</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">2. We printed out big letters on paper and taught her the alphabet</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">3. Read to her constantly and exposed her to math as a 2 year old.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">4. We did infant massage that helped a lot. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">5. We did lots, and lots of Tummy time! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">6. We did all the PT and OT exercises we learned in early intervention outside of those sessions. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">7. We let Ellie play on a big foam ABC mat at home so that she had to move and roll to get to her toys. This built strength.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">8. We did a ton of foot soaks with espson salts so the magnesium would sooth her stiff ankles and feet (we still do those).</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Ok so now onto your questions:</span><br />
<b><span style="font-family: Trebuchet MS, sans-serif;">What are the three therapies that helped Ellie the most?</span></b><br />
<span style="font-family: Trebuchet MS, sans-serif;">That's easy:</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">1. The neuro-respiratory therapy we did with Linda Scotson at Advance. She now calls it The Scotson Technique. But we did it with Ellie 6 days a week, 4 hours per day for several years, traveling to England to Advance twice a year to learn more. That helped Ellie tremendously with her breathing and eating and being in her body. Linda also counseled me and gave me the strength to fight the medical diet that Ellie was on that was making her sick. See my posts on nutrition. Ellie has severe reflux. I was able to help her be minimally symptomatic by changing her to an alkaline diet of whole foods. We researched this for a long time before we went. And I finally called Linda and had a long chat with her and then made the investment. I encourage you to research everything using the web and asking around as much as you can. There are no easy answers to the questions CP and TBI's pose to our kids. If you call Advance they will talk to you free of charge. I would call them and ask all your questions to them to (that makes two!)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">2. The nutritional based healing I did with her by putting her on real, whole foods I make myself that were high in alkaline and low acid. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">3. The hyperbaric oxygen treatments (with the protocol Linda Scotson developed). We did a lot of this since Ellie was 13 months. They helped tremendously. We saw her make gains from them in terms of being more alert and aware and along with the TST she got healthier. Additionally, many of the parents we met doing the same thing, who had kids who had lots of seizures said they saw a decrease in the number of seizures. So we are believers in (with the right protocol - Linda's is akin to what divers do and is very specific) Hyperbaric.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">4. Tummy time. Tummy time could be number 1. We read Linda's book called Doran, it really shows how being on one's tummy wires up the brain to the body and in Ellie's case this helped a lot. It helped her get stronger all over. We do tummy time every day even now.</span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">Was it worth it traveling to England for TST?</span></b><br />
<span style="font-family: Trebuchet MS, sans-serif;">YES, and yes again. If I had to do it all over, I would have done it as soon as Ellie was able to board a plane and I would have done even more of it. The combination of the TST, hyperbaric, and nutritional healing helped Ellie when all the meds in the world were making her sicker and sicker. I would do it all again and am grateful to Linda and the staff there for the work they did with Ellie and us. </span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">What else do children do at Advance?</span></b><br />
<span style="font-family: Trebuchet MS, sans-serif;">Lots of tummy time to deliver the gentle touches that build up the child's respiratory system that allows more oxygen to get to the brain. They will also do hyperbaric. Linda gave me a ton of counseling on Ellie's nutrition that made all the difference for Ellie and for me to fight to get Ellie off the medical diet of synthetic foods the doctors were saying she needed. If you look under the tab "nutrition" you can see in depth what I did. But any child with reflux who also has CP (in fact everyone) will hugely benefit from a low acid, high alkaline diet of whole foods versus the synthetic, acidic stuff the doctors push on their patients. We learned that acid builds up in everyone's cells - this is normal. The way a typical person gets rid of that acid is by movement. Because it was hard for Ellie to move, she had more acid to deal with in general. And this also negatively impacted her reflux.</span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">Is TST useful to a child who does not have respiratory issues?</span></b><br />
<span style="font-family: Trebuchet MS, sans-serif;">Yes. Ellie wasn't a chronic lung kid because she was a big 27-weeker. But, because of her prematurity and her brain injury, her body was not developing normally. The TST increased her circulation and oxygen saturation that helped Ellie's whole body and brain. </span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">How old should a child be to start?</span></b><br />
<span style="font-family: Trebuchet MS, sans-serif;">ASAP. You can't start her too soon. The earlier the better in fact. A child's brain is like a super brain, developing and growing like mad. What a great time to influence that by ensuring the body is wired up to it. The TST helps people with brain injuries like Ellie because those gentle influences on the nervous system communicate to the brain and the whole system gets back in sync if that makes any sense. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">I wish we had done it as soon as Ellie was able to travel. It wasn't cheap in that we were coming from the US and our work was impacted by having to take care of Ellie. So we went into debt to do it - but it was worth it. I don't regret it one bit. And, when Ellie was small it was much easier trip than it would be today. Though I want to take her back to Linda for an evaluation. So we might do that at some point. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>What do we do psychologically?</b></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">This question of yours is the most heart breaking. I don't think there is any easy answer. Dave and I were devastated of course. But the great thing was that both he and I knew that we loved Ellie and we could feel her presence - our connection to her. We focused on that and decided to believe in her and look for ways to help her heal from her injuries. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">In that sense, healing did not mean believing all the doctors said - in fact the opposite. If we believed them we wouldn't have done 90% of the things we have because they said she would be a vegetable. Which clearly turned out to be wrong. Also, they will tell you Stacey needs this and that surgery, this and that intervention. Be very wary of this. It's true, Stacey may need certain interventions. But the thing to be wary of is two fold. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">First, there is this thing called the "management model." Under this philosophy (also a Greek word ;-) interventions, surgeries are done to help the caregiver <b>not </b>for the healing of the patient. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Second, medical knowledge is always evolving and doctors don't know everything. So ask the same question of three different people when you are trying to make your decisions. You will be surprised to have three different answers. Also, use your gut and common sense and do your research (like you are by reaching out to me). We were told for example that when Ellie needed a g-tube she would also need a Nisson Fundoplication (where they tie a bit of the stomach around the opening sphincter of the stomach so that the patient can't vomit). We refused based on two things: research that showed the fundo made it very hard to swallow and eat by mouth, and the fact that vomitting is the body's way of getting rid of things that are toxic to it. It didn't make sense. Note: some kids do well with the fundo and need it. But Ellie is hypotonic and reflux decreases if a child can eat by mouth because digestion starts in the mouth. We did not want to take that away from her. We made this choice in light of the doctors threatening us by saying that Ellie was sure to get esophageal cancer. During another, truly needed surgery, we had Ellie scoped and turns out her esophagus is perfect. So the doctors were wrong. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span><span style="font-family: Trebuchet MS, sans-serif;">As you can see, the way Dave and I dealt with all of this was to just dive in and work hard to save Ellie's life and make her life good and cherished and safe and thoughtful and hopeful. This sustained us through years of long nights being up with a vomitting refluxy baby who never slept. It sustains us through all the bad things. We just keep trying to do whatever we can to move her forward. Though I think I could do a lot more these days - like Feldenkrais. I want to do this with Ellie. I will let you know, here if we do and how it goes.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Another hugely helpful, sustaining thing was being in touch with other parents. The cohort of parents we met in the long months Ellie was in the NICU taught us so very much. The same is true of the amazing parents we met at Ellie's first school. So if you can find others in a similar situation that can help protect your sanity. (So I am glad you reached out to me!)</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyyMvf03ikm0-oVi4FjaZoJPLWaEhYZrzVniCIxYKixon5gqShX0HQzXS7Iw6L4EXdj5of7dI1DOHVhYadl-8qPqo3seUkyRXdsgYZq4HP0rWRYXM_U_fOMKNoN1k4PPOH6ab2GQ/s1600/IMG_3964.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyyMvf03ikm0-oVi4FjaZoJPLWaEhYZrzVniCIxYKixon5gqShX0HQzXS7Iw6L4EXdj5of7dI1DOHVhYadl-8qPqo3seUkyRXdsgYZq4HP0rWRYXM_U_fOMKNoN1k4PPOH6ab2GQ/s1600/IMG_3964.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ellie playing her guitar this week!</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">I am not sure that is a great answer to your question. But to be clear, I cried a lot too. I grieved a lot too for many years but especially early on. I grieve still for the loss of that healthy child that Ellie might have been if not for her traumatic brain injury and prematurity. When my grief comes I honor it but try not to live there for long. The cool thing is that whenever I get overwhelmed by worry or grief (and I still do at times, but not as much as in her first 7 years) I go and hang out with Ellie. She makes me be in the present moment. And in the moment all I experience is this cutie pie of a girl, who I love more than life, who is inquisitive, loving and wants to dance! She is my normal and my heart. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Your Anastasia reminds me of Ellie in terms of the shape of her head. ;-) But she is wide and clear eyed. When Dave and I saw her we both said, oh she's going to do great. Not that we know this for sure. But she looks really good and she's a cutie pie. ;-)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I am sorry whatever happened to her did. I am sorry this is happening to you and her mother. I am glad you reached out and I hope this is helpful. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Please, write any time.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Love and hugs, </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Kathryn </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com4tag:blogger.com,1999:blog-31461418.post-53086686142248688142014-09-01T08:57:00.001-04:002014-09-01T08:57:54.786-04:00Pharrell's "Happy" in ASL by Deaf Film Camp at CM7<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/H3KSKS3TTbc" width="480"></iframe><div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com0tag:blogger.com,1999:blog-31461418.post-65168521171775013722014-07-06T18:22:00.000-04:002014-07-07T19:00:25.064-04:00Life at 11. Purposeful speech and other news.<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3kCfHDS9FXn9slxVl6zhhYqqjkyeTMGxtfZCu_F_lzIVuJc0pE6FPRhmNTpBYsdGAGI9Q4D_hngi8Let1mQkYlb2E7aycLjO9GoB5hZXWXdOF3pJmiuw5Wnn4i17b3PE8SHrLXA/s1600/pjp_guitar_1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3kCfHDS9FXn9slxVl6zhhYqqjkyeTMGxtfZCu_F_lzIVuJc0pE6FPRhmNTpBYsdGAGI9Q4D_hngi8Let1mQkYlb2E7aycLjO9GoB5hZXWXdOF3pJmiuw5Wnn4i17b3PE8SHrLXA/s1600/pjp_guitar_1.jpg" height="200" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Paper Jamz Guitar</td></tr>
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Ellie is firmly into the pre-teen zone of consciousness. She introduces us to popular music on You Tube she finds all on her own. She thinks Katie Perry's <i>Roar</i> is pretty great (I agree) and she loves Capital Cities song <i>Safe and Sound</i>. <i>Kissing You </i>by Miranda Cosgrove is also a huge hit. She still loves to dance with her Fijits and all her toys blaring all over the house. She calls this a <i>Jam Session</i> and she means it. She particularly loves this Paper Jamz guitar as well. All these toys offer a big return for her big effort in motor planning to play with them. She is so patient with herself and determined when she is manipulating images on the iPad for example. Sometimes it takes her 10 or more tries to get what she wants but she patiently keeps trying employing a laser like focus in her attempts. It's impressive. I need to cultivate that type of patience in myself about my own efforts to learn about and traverse the world.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinXd8ON5yRnarePQONgFvAt2gObdc6Vs7PT8NlnpAgZkOFgtWXJgBvPjVkVdQ2XBY843-gzB3Zkvz9y3tSATGjnkfixgnkJODyCldZCaSZA6R90GGIKoEVABIs_qFRGCHbF4sZng/s1600/IMG_3703.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinXd8ON5yRnarePQONgFvAt2gObdc6Vs7PT8NlnpAgZkOFgtWXJgBvPjVkVdQ2XBY843-gzB3Zkvz9y3tSATGjnkfixgnkJODyCldZCaSZA6R90GGIKoEVABIs_qFRGCHbF4sZng/s1600/IMG_3703.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ellie at 11 and a half.</td></tr>
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<br />
She is also still (knock on wood) G-tube free.<br />
<br />
I have to pause whenever I think about it because it has been such a huge life change. We can go in ponds now….! Ponds! We live right next to one so that is significant. Though, it's July 6 and we have yet to take her. We are still in our old way of life in our minds in many ways. I think we are a bit shell shocked. You get into a certain mode of living and stick to that pattern. It might just be a bit of fatigue too BUT my goal is to take her to our local neighborhood pond this year and just try it. The beach there may not have an accessible path down to the water like the one we saw in Provincetown so that is an obstacle but still - it's worth a look, right? I need to take a leaf out of Ellie's book and keep trying things until we find the right solution.<br />
<br />
She loves swimming and we hardly ever take her. I am put to shame by my friend's who take their quadriplegic daughter a few times per week. We have to get a stander up and running too. Always so many things to get up an running and it's overwhelming most of the time with both Dave and I working full time.<br />
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<tr><td class="tr-caption" style="text-align: center;">Provincetown Beach Accessible Path</td></tr>
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Ellie is all legs and arms these days as you can see in this picture. Growing, growing, growing, bones winning the race against muscles and ligaments. Which means Botox and casting and other interventions to ensure she doesn't end up a pretzel. Spinal orthosis (body jacket) and ankle, foot orthotics (AFO) are the measure of the day. Her network chiropractic appointments have kept her spinal curvature at bay and have also loosened up her ankles. Ellie has increasingly higher tone the lower you go down on her body and her poor feet and ankles are hit the hardest. I can't say enough good things about how <a href="http://www.jenniferlees.com/" target="_blank">Dr. Jennifer Lees</a> has helped us. I wrote, <a href="http://ryntales.blogspot.com/2014/01/change-change-change-for-better.html" target="_blank">here</a>, about the initial scare with a huge curve in Ellie's spine that has since resolved. I still take Ellie once a week to Dr. Lees and it's worth every cent and every bit of time it takes to do so. Thank God for non invasive help!<br />
<br />
Ellie also loves her new school. They are rigorous in terms of schedule and academics and making the environment as much like a regular public school as possible. Seeing how much support they give their teachers I am pained for Ellie's old school and what they could achieve if they considered modernizing their approach. I'm grateful that I switched her though, every day. This year along with having regular science class, language arts and math every day, Ellie also got exposed to industrial arts (shop) and cooking class and a very robust after school program where Ellie got to meet some of the older kids in an iPad class (her favorite), a game playing class (checkers, etc.), and a movement and music class. They also have a very competitive but inclusive softball program on their AstroTurf pitch. The pitch is one of the only ones in the country at a special needs elementary school….(What's up with that country?!)<br />
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<tr><td class="tr-caption" style="text-align: center;">Ellie on the AstroTurf pitch with her trophy.</td></tr>
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This summer for the first time I am taking her to day camp….there actually is one that provides a one to one aid and can manage Ellie's total care needs. We will see how that goes but I am hoping it offers another way for us to bring the world to Ellie.<br />
<br />
The most exciting thing that happened over the last few days is that Ellie started interjecting (with her voice output device) into the conversation - with sentences that were spot on in terms of being part of the conversation. For example, Dave and I have started watching movies with Ellie on her iPad before bed. We use the iPad because it's a small enough screen so that Ellie can watch the movie without fatiguing her eyes. It's also a big enough screen such that all the beauty of the movies are not lost.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw1Ywi1px04IP-mcmG1lXQgKLRYa4kXuiuy6Zg0pUjbN6td6UtBd3h738gJnR8PWtgFQzqwarMytcpszoCtorTXJF_-DFGVKcFg-gcoDVJu8Jl6j4UmlNAYbQtXRbmbK7JuUkSuA/s1600/IMG_3372.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw1Ywi1px04IP-mcmG1lXQgKLRYa4kXuiuy6Zg0pUjbN6td6UtBd3h738gJnR8PWtgFQzqwarMytcpszoCtorTXJF_-DFGVKcFg-gcoDVJu8Jl6j4UmlNAYbQtXRbmbK7JuUkSuA/s1600/IMG_3372.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ellie as Bat Girl for Halloween</td></tr>
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We were trying to figure out how to use Amazon's Instant Video and upload it, etc. on the iPad. During the first attempt, Ellie who was watching intently interjected, "That's not working." and she was right! She did it again when we were discussing plans for the day using another short but totally appropriate sentence to join in. And she did it so fast too in terms of her picking the right options on her Dynavox Maestro - so fast. It makes me think that she could communicate a whole lot more if she was interested. Her new school is all about use of technology and it shows but I also think her brain is growing and evolving and she is coming out <br />
of her shell a little more. Her being able to interject into our conversations in a more sophisticated way gives me hope of her being able to, eventually, communicate with people that don't know her well. <br />
<br />
Don't get me wrong, Ellie has always been able to make herself heard with us. BUT really only in things revolving around her care, her needs and in a very truncated fashion. For example the tilt of her head to indicate that she wanted to be pushed in that direction. So she does and has always communicated. But for her to say, "That's not working" and be right and right in there with what is going on is very validating in terms of our belief in her intelligence.<br />
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Life is going by pretty fast these days. I understand now why when I was a kid I preferred other kids or the grandparent set. The middle of life when you are supporting a family, a home and a career often feels like an unending ride on a fast roller coaster. It's a lot. Blogging about it is a way to press pause and reflect on the things that matter and make all that hard work worthwhile.<br />
Hope you are having a great summer!</div>
<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com2tag:blogger.com,1999:blog-31461418.post-62002557425060503022014-01-31T09:39:00.001-05:002014-02-01T08:45:51.692-05:00Cha, Cha, Change! or Goodbye Feeding Tube!<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">Ellie having a lavender foot soak on her Winter Break</td></tr>
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This last 6 months has been a time of intense change for us all and for the better. On October 22nd of 2013 Ellie got her g-tube OUT (for good if I can be so bold to say that)! AND on November 4th she started at a new school.<br />
<br />
When Ellie was born our wonderful neonatologist Dynio said that Ellie will present her needs. That concept stuck with me.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNYZA6TxEhg0t7S8xe0twGg7zD_MzN1bcbDpqgXPxHrwDjSgF-yPowq08NsP_69tJ8I6KI8Q2id-gOiXsIHxR3UdzhT8qsI9vUvrECYYwbwnLMP8qgFwmwy_t1KusImuStCgN6sg/s1600/IMG_3295.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNYZA6TxEhg0t7S8xe0twGg7zD_MzN1bcbDpqgXPxHrwDjSgF-yPowq08NsP_69tJ8I6KI8Q2id-gOiXsIHxR3UdzhT8qsI9vUvrECYYwbwnLMP8qgFwmwy_t1KusImuStCgN6sg/s320/IMG_3295.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and Ellie playing her Paper Jamz guitars</td></tr>
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Ellie's g-tube was always a nightmare of leakage, skin breakdown, and intense management. It progressively started popping out more and more. I tried it all, taking it out for a little time (actually over night) to see if the track would shrink a bit. Taking her to the doctor to see if they could surgically make it less leaky. We are lucky to have a dear friend who is a wound care nurse par excellence so we have been able to manage her dressing at home and avoid the initial yeast and fungal infections that occurred when we were still in California (another benefit of having moved to Boston). But it was coming out more and more and we were changing our elaborate and expensive dressing on it several times a day. They had to do this in school too. And it was constantly leaking.<br />
<br />
In February (this time last year) it was popping out once a day and Ellie's physical revealed low vitamin D levels. I upped her vitamin D and other nutrients and in April got an appointment to see a GI doc to see if there was another type of G-tube that would work better. It had started popping out twice a day.
And for those of you who have not lived that - it's awful. Ellie is in pain because stomach acid burns the exposed skin around the tube which was like an open wound all the time. And she loses whatever meal she just ate and you have to transfer her, lay her down, and clean and redress the site, insert a new g-tube (into her stomach) and get her washed and dressed in new clothes. The whole thing can take a good 30 - 40 minutes as you try to distract Ellie who wants to scratch her stoma area because acid on skin hurts and itches. Super fun.
So when we went in April we saw a nurse first. She asked me to show her the site. I got Ellie onto the table and asked the nurse for some towels. She was surprised by this. But she got them. Me and the nurse I brought with me then proceeded. I cut off the dressing and my nurse positioned the towels to stanch the deluge of stomach fluids that would ensue after I took out the Mic-Key Button so the nurse could see the site.<br />
<br />
When the GI nurse saw Ellie's stoma she shrieked (not exaggerating here), "OH MY GOD! OH MY GOD! It's a hole! It's an open wound! OH MY GOD!" I started to explain how hard we have worked to keep Ellie's skin clean and well cared for and that the tube leaked from the beginning and that we have had to limit Ellie's PT and body Jacket and every thing to protect the site. She kept saying Oh MY God! At which point I started to cry feeling very bad.
She then said, "You guys have been going to heroic measures to care for this! The skin around her site is remarkable and perfect! But her site is a hole, there is no track." I said that I had thought so but that Ellie's old GI Dr. had not mentioned that during the last exam.
She calmed down once I started crying and I calmed down too. The doctor came in at this point and we decided to try a different tube and see them once a week to follow it.
Long story short we tried the tube and it worked a little better but not much.<br />
<br />
<div style="text-align: left;">
<i><span style="font-size: large;">The whole incident with the nurse losing it was actually a wake up call for me.</span></i></div>
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We had been going to heroic measures. Me and Dave and Ellie's teachers and the carers we have helping us in the home. Our quality of life was very negatively impacted, Ellie's most of all by this. Ellie had been doing great taking sips of liquid from her amazing speech therapist Katie. AND she had been eating all her purees for several years now. I realized that maybe she was presenting something new to us. Presenting that it was time to get rid of this awful, painful wound.<br />
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I presented this idea to the head of GI at the hospital and he said that if we close up this site and then put another feeding tube in a different spot, there was no guarantee that her skin would not do the same thing. He later retracted that because I think for a doctor it's a huge risk to encourage a parent to get rid of their kid's feeding tube when they have a history like Ellie's.<br />
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However, Ellie was doing well with her drinking and a nutritionist had told me there were kids with no feeding tube who did not drink and were OK. Note this was not my goal - I want Ellie to drink. I knew that all the time we had spent changing her dressing and managing her site would now be spent on working with her to drink.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijyHAM4JCXSJ3-wVUl18Kvk0MUMDKGe1n_x285JB4yV4HFG1_n9p9oDH5H3KPsui36s54IqDXj1yc9DVbCQuWOy5Uq7CaI671YUZf6kjWpaG7VZufjCoh5Bo-ulvLvmAywsd1QAA/s1600/noseycup.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijyHAM4JCXSJ3-wVUl18Kvk0MUMDKGe1n_x285JB4yV4HFG1_n9p9oDH5H3KPsui36s54IqDXj1yc9DVbCQuWOy5Uq7CaI671YUZf6kjWpaG7VZufjCoh5Bo-ulvLvmAywsd1QAA/s1600/noseycup.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nosey Cup</td></tr>
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But isn't that time better spent? We spent over 12,000 hours getting her to be able to eat and her glowing skin, hair, and growth rate, alertness, and lack of colds (and normal elimination) is a testament to the goodness of having done that. Also, there are cups everywhere that you could make into a nosey cup by tearing or cutting it. There aren't g-tubes and Allyven pads, and Hy-tape everywhere or people who could even handle dealing with Ellie's site.
My goal as her mother who loves her is that she be as independent as possible by the time I leave this world and that includes not being dependent on expensive medical supplies (if at all possible). Note, I am not knocking those supplies or the tube - they saved her life. BUT if there is a choice point that involves more work for me but provides an ultimate benefit for Ellie, I am going to go for it.<br />
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In the several months before the surgery we worked and worked on getting Ellie to drink. We all (school personnel and Dave and I and our home carers) used spoons and the nosey cups. We had enough experience with feeding Ellie that we knew what to do. It was an adjustment for all of us. Giving someone liquid in a cup is difficult enough. Now factor in someone who moves her head from side to side and has a slight oral aversion. We started by thickening apple juice with apple sauce. But because apples are so hard on the teeth I now give her other things to drink. One is her cantaloupe and coconut water juice I make her myself.<br />
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Ellie's Hydrating Cantaloupe Water Recipe:<br />
<ol>
<li>1 cantaloupe</li>
<li>1 100 ml or more of coconut water</li>
<li>1 pinch sea salt</li>
<li>1 tablespoon of agave</li>
</ol>
Direction: Take 1 whole cantaloupe seeds and skin removed and blend it with one big carton of coconut water along with a pinch of sea salt and a tablespoon of agave (optional).<br />
<br />
Ellie loves this and it's very hydrating and cantaloupe is easy on the teeth. I also give her my green juice too which she loves! I make Kris Carr's Make Juice Not War juice (Google it).
The other thing is that Ellie eats purees all day - not dry crackers or cereals or dry anything. There is liquid in her meals. I do worry about her getting "free water" but for now she is hydrated.
Though the doctors would have liked to see Ellie drinking 1,000 ml's of liquid a day, we did the operation when she was at about 300 cc's per day. Which is pretty good as we started at 0. A critical factor was that she would eat her meds that we mixed into her purees.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLrvcfwadW2xohfuOXdvcOkfNKUeMmEnJjKYYR1qfju1iEPgGJW9rOWiaQ1kQkWvCjY7aIM9RzcihUd0KlXggKlkvX6A6vhz9AxtP5j_xFuvYEqTfmwlay10WXasRP2nLOb_hZ7A/s1600/IMG_3283.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLrvcfwadW2xohfuOXdvcOkfNKUeMmEnJjKYYR1qfju1iEPgGJW9rOWiaQ1kQkWvCjY7aIM9RzcihUd0KlXggKlkvX6A6vhz9AxtP5j_xFuvYEqTfmwlay10WXasRP2nLOb_hZ7A/s320/IMG_3283.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ellie on New Year's Day 2014</td></tr>
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On October 22 we had the operation. The surgeon told us we would be in only overnight but because he realized Ellie's shunt cables drain into her abdomen and because her site was so bad (the stomach lining was growing outward..!) he did some extra things to ensure closure and that her stomach contents would not leak into her abdomen compromising her shunt. We were in from Tuesday to Friday with Ellie on morphine and in a great deal of pain the whole time. Not fun. Poor Ellie. I remembered it was rough for her to get a tube and for my little girl, equally rough getting rid of one (which is so NOT the norm - typically they close on their own). I am not sure what her karma is in this life, but she has some extraordinarily challenges.
Full recovery took about 2.5 months.<br />
<br />
Today she is eating slightly less than she did with the tube (but not losing fluids and whole meals either). She is drinking about 400-500 per day, and hydrated and moving her bowels much, much better, and her vitamin counts are all excellent. She was losing so many nutrients and calories every day right out of her tummy. Now she is keeping it all in. She still has reflux, but it's much better too. The green juice is still a huge factor in her being less acidic but she also isn't taking air in through her belly anymore.
We were also able to get a body jacket (spinal orthosis) that actually works because we don't need a big hole in it to accommodate her G-tube.<br />
<br />
Most of all, Ellie's quality of life is much, much better! She is in far, far less pain. She is able to concentrate much better without the constant itching and pain of the tube.
For her 11th birthday she got her tummy back. Can you imagine how distracting having a feeding tube that hurts all the time was for her? I think about when I get a cut in my finger and how it can be slightly distracting when it's fresh. A leaky, painful feeding tube would be magnitudes worse.
Every time I see her smooth yet scarred belly I have to kiss it. She had to be really brave to drink because liquid is really fast and scary to deal with if you are hypotonic and have dysphagia. Ellie works as hard as we work with her and the results have been worth it.</div>
<div class="blogger-post-footer">Copyright of Ryntales.blogspot.com, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013. All rights reserved.</div>Kathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.com3