tag:blogger.com,1999:blog-34841444188326858832024-02-21T05:07:54.080-08:00Sadie's JourneyThe adventures of a brave little girl with Aicardi Syndrome.Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.comBlogger77125tag:blogger.com,1999:blog-3484144418832685883.post-47189361733764957372016-12-06T11:18:00.000-08:002016-12-06T11:18:41.618-08:00Honoring Our Sweet Girl<div id="yiv6630088525yui_3_16_0_ym19_1_1478806380492_4309">
As some of
you are aware, over the past few months we've been pouring our heart and
soul into creating a lasting legacy for our sweet girl. I'm proud to
announce the development of <a class="yiv6630088525edited-link-editor" href="http://www.sadiemccannfund.org/" id="yiv6630088525yui_3_16_0_ym19_1_1478806380492_4594" rel="nofollow" target="_blank">The Sadie McCann Fund</a> - a memorial fund established in Sadie's memory to benefit families of children with Aicardi Syndrome. </div>
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The motivation behind this Fund - besides honoring Sadie's memory - was a stark realization that we have been so incredibly blessed as we navigated this diagnosis and its associated challenges - blessed to have a strong support system, blessed to have the financial means for one of us to take an extended leave from full-time work, blessed to have the ability to find the resources we needed, blessed in so many ways. This realization comes with knowing that others do not have the same means and resources available to them - which can make navigating life with a chronically ill child much more difficult. </div>
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We
will be raising funds over the next few months and plan to award grants
to our first group of families in the Spring of 2017. If you are so inclined
to make a year-end charitable donation to the fund, we would truly
appreciate your support. Please feel free to share the website with
friends and family and on social media. We will also be continuing
fundraising efforts at our annual spring "Celebrating Sadie" event. </div>
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Thank
you to everyone who provided advice and counsel throughout this
process. We are humbled to have your support and friendship as we honor
Sadie's memory. Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com1tag:blogger.com,1999:blog-3484144418832685883.post-18060624260659116672014-04-15T17:37:00.003-07:002014-04-30T19:28:03.117-07:00Were you the Recipient of an "Act Of Kindness?"<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigu3lSa6Zc0O4ctHanH7T-RyhTBdfH18c-64XDOs2c_zAqozvYqYUmUaGqtLS60f9cODB2t_GFkKG1D52Y-aFsmGnCFk7qm53N-v7f9cCFS2dJW8V45VeYxbgy63Zb-zY4EV8ZsjLG_9PH/s1600/Sadie+Vert.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/AVvXsEigu3lSa6Zc0O4ctHanH7T-RyhTBdfH18c-64XDOs2c_zAqozvYqYUmUaGqtLS60f9cODB2t_GFkKG1D52Y-aFsmGnCFk7qm53N-v7f9cCFS2dJW8V45VeYxbgy63Zb-zY4EV8ZsjLG_9PH/s1600/Sadie+Vert.jpg" height="400" width="200" /></a></div>
<span style="font-family: inherit;">Over the next few weeks, teams of family and friends will be canvassing their communities with "acts of kindness" in memory of Sadie. </span><br />
<span style="font-family: inherit;"></span><br />
<span style="font-family: inherit;">The majority of participants will be in the Northwest Suburbs of Chicago. As part of a Life Celebration for Sadie, teams of four will be provided with a list of "Acts of Kindness." The list will include acts such donating items to a local food pantry or paying for the person's coffee
behind you in line. Each recipient will then be given a card that states the act of
kindness was done in memory of Sadie (see image).</span><br />
<span style="mso-spacerun: yes;"><span style="font-family: inherit;"></span></span><br />
<span style="mso-spacerun: yes;"><span style="font-family: inherit;">Sadie taught us so much during her short life. One of the most important lessons she taught us was to be kind to everyone, for everyone is fighting a battle we know nothing about. We can think of no better way to honor her life than to shower our community with kindness. </span></span><br />
<span style="mso-spacerun: yes;"><span style="font-family: inherit;"></span></span><br />
<span style="mso-spacerun: yes;"><span style="font-family: inherit;">In addition to the large contingent of participants in the Chicago area, there will be remote teams performing acts of kindness in 20 different cities throughout the U.S. and Canada - from Los Angeles to New York. </span></span><br />
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Visit <a href="https://www.facebook.com/FriendsOfSadieMcCann" target="_blank">Sadie's Facebook page</a> to see photos of some of our Acts of Kindness.<br />
<span style="mso-spacerun: yes;"><span style="font-family: inherit;"></span></span><br />
<span style="mso-spacerun: yes;"><span style="font-family: inherit;">So...were YOU a recipient of an "acts of kindness?" Share your story in the comments below! </span></span><br />
<span style="font-family: Calibri;"><span style="font-family: inherit;"><span style="mso-spacerun: yes;"></span></span></span>Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com29tag:blogger.com,1999:blog-3484144418832685883.post-6202991259976031562014-02-18T06:26:00.001-08:002014-02-18T06:26:15.285-08:00Honoring Sadie<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmNfm50pvHnw1AN-GKExWK892pmeZoWpzQuAebN-OeWEc-KEo4-gZhGAsSe2xKzL3zuGEab6WRlcrz2EUToaEg7NSnyWQVtmBNbaTZOKHnMrAjGCn0YUuNRu_vLmr4RW5w8l3upS4sdZhB/s1600/sadie+ribbon+angel+wings.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/AVvXsEhmNfm50pvHnw1AN-GKExWK892pmeZoWpzQuAebN-OeWEc-KEo4-gZhGAsSe2xKzL3zuGEab6WRlcrz2EUToaEg7NSnyWQVtmBNbaTZOKHnMrAjGCn0YUuNRu_vLmr4RW5w8l3upS4sdZhB/s1600/sadie+ribbon+angel+wings.jpg" /></a></div>
It's been three months since our angel went to heaven. I haven't posted anything because, to be honest, this blog was developed as a way to update friends and family on Sadie's experiences. And, with her now in heaven...well, you see...<br />
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I speak for both of us when I say the past three months have been the most difficult of our lives. It has been hard to set aside the "what ifs" and the horrors of her last few hours. However, we have been blessed by the outpouring of support received from friends and family. It has been a humbling experience to know so many people care. <br />
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I heard a wise person say, "You can let you're grief tear you down, or you can take that experience and rise up." We've been trying to rise from this experience. I can tell you that it's definitely not easy, it takes dedication and work, but it is so worth it. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh53brkY8-j3E3ZV2vmsluhyphenhyphenlpyD-7gpxtPVmt-Y42cthitGLLPc-d4_2UO7Wj4IyUmCcR_EITU4mbyYHloX9nclGWMj1r0M_x62ZOKGTdtbuHoCVnahWRnV41hxtv7sisLs548AdErZqKk/s1600/photo+2.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/AVvXsEh53brkY8-j3E3ZV2vmsluhyphenhyphenlpyD-7gpxtPVmt-Y42cthitGLLPc-d4_2UO7Wj4IyUmCcR_EITU4mbyYHloX9nclGWMj1r0M_x62ZOKGTdtbuHoCVnahWRnV41hxtv7sisLs548AdErZqKk/s1600/photo+2.JPG" height="240" width="320" /></a></div>
We were honored to have so many individuals and organizations help us during Sadie's short life. It has always been our desire to give back to these organizations in some way. It is through giving back that we are choosing to honor Sadie's memory.<br />
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Recently, a group of friends and family made dinner for the families staying at a local Ronald McDonald House. The Ronald McDonald House is a wonderful organization that provides housing for families so they can stay near their hospitalized children. As many remember, our family stayed at the Ronald McDonald House near Cleveland Clinic twice during Sadie's surgeries. Making dinner was a great experience and we also had the ability to talk to a few of the families.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipH_qZhT1wbgew1QpjaRdm1bGncGvh6b9HlzVS7vEItPUcmUT42M8bPKNV6jVb4yttGOczMRZUkplnSji8JIdK7C8X5LzeEIAvZUriFkmcaZ3Egxte2RLSgSRQMT4pXddefZJrAStRmGwM/s1600/RMcD3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipH_qZhT1wbgew1QpjaRdm1bGncGvh6b9HlzVS7vEItPUcmUT42M8bPKNV6jVb4yttGOczMRZUkplnSji8JIdK7C8X5LzeEIAvZUriFkmcaZ3Egxte2RLSgSRQMT4pXddefZJrAStRmGwM/s1600/RMcD3.jpg" height="240" width="320" /></a>This spring, a group of us will be participating in a yard clean-up through another amazing organization, Normal Moments. This service is provided to local families who are consumed with their children's chronic medical issues. Our family benefitted from the yard clean-up for three consecutive years. I can't tell you how nice it is to look out your back door and not see overgrown bushes and weedy flower beds. The volunteers beautifying our yard gave us the most precious gift - the gift of more time with Sadie. We are happy to be able to offer this gift to another family. <br />
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Finally, we will be celebrating Sadie's life and what would have been her 4th birthday (April 29th) with a life celebration in early May. The inspiration for the life celebration came (in part) from two websites (<a href="http://www.thebdayproject.com/">www.thebdayproject.com</a> and <a href="http://www.randomactsofkindness.org/">www.randomactsofkindness.org</a>). I've always been so moved by stories of folks who perform these random acts of kindness. So, inspired by this concept - we will be conducting an Acts of Kindness scavenger hunt as part of Sadie's Celebration. <br />
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Attendees will be given a list of "acts of kindness" to perform - tasks such as helping an elderly person load groceries into their car or paying for the person's coffee behind you in line, etc. Each team will pass out a card as they perform these various acts of kindness which will explain the act of kindness is being done in her memory. We hope to blanket our community in kindness. <br />
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We hope these efforts provide some joy and comfort to others - we know it provides the same for us. It is these types of things that have provided us light during these dark days. We thank everyone for their ongoing support. Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com6tag:blogger.com,1999:blog-3484144418832685883.post-6849419729926216192013-11-21T06:35:00.002-08:002013-11-21T06:35:34.295-08:00Our Angel<div id="yiv4945595785yui_3_13_0_ym1_1_1384981515797_41972">
<span id="yiv4945595785yui_3_13_0_ym1_1_1384981515797_41971"><span id="yiv4945595785yui_3_13_0_ym1_1_1384981515797_41970"><span id="yiv4945595785yui_3_13_0_ym1_1_1384981515797_41969"><span style="font-family: Arial, Helvetica, sans-serif;">With a heavy heart we share that Sadie received her angel wings yesterday morning. She joined her Heavenly Father, grandfathers, great grandma, uncle and many others who passed before her. We are comforted knowing that her body is no longer suffering and she is skipping and laughing in heaven.</span></span></span></span></div>
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<span><span><span><span style="font-family: Arial, Helvetica, sans-serif;">In lieu of flowers, memorial donations may be made to JourneyCare Foundation – Care for Children Fund, 405 Lake Zurich Rd., Barrington, IL 60010; Normal Moments, 1318 Baylor Ct, Naperville, 60565; or the Aicardi Syndrome Foundation, P.O. Box 3202, St. Charles, IL 60174.</span></span></span></span>Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com3tag:blogger.com,1999:blog-3484144418832685883.post-25249077678099972512013-10-12T13:06:00.000-07:002013-10-12T13:06:07.211-07:00You Don't Say...<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGGT20kkUctlUJgCrPPLYKN3fnOjUkTpWQiW9AEv50PY7fEHZiqUYZPKx3T85Y3DIqa-JkeZPw0x3V1nxZfHFk6_rHON2-9Mc8boqn1-svSFoY8cZW_SXRI7AQooQpyHNJRYxsnc9BGWoe/s1600/don't+say.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/AVvXsEiGGT20kkUctlUJgCrPPLYKN3fnOjUkTpWQiW9AEv50PY7fEHZiqUYZPKx3T85Y3DIqa-JkeZPw0x3V1nxZfHFk6_rHON2-9Mc8boqn1-svSFoY8cZW_SXRI7AQooQpyHNJRYxsnc9BGWoe/s1600/don't+say.jpg" /></a></div>
I have this friend, let's call her Suzanne, who is a skilled verbal communicator. She always knows the right thing to say at the right time. She is concise and thoughtful with her words. Suzanne - without any pretenses of trying to come across as self-important - deftly uses large intellectual words in daily conversation. I've always admired her verbal prowess, as well as those of people like her who can clearly articulate their thoughts and feelings verbally. <br />
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Admittedly, I am not one of those people. I have always communicated more clearly in written form than verbal. (Example A: this blog.) I often struggle to say the right thing at the right time, to clearly articulate what I'm thinking, and more than a few times have made many a verbal faux pas. <br />
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I recently read a <a href="http://www.lovethatmax.com/2013/09/im-not-great-parent-just-because-i-have.html" target="_blank">blog post</a> on one of my favorite special needs blogs<em> </em>in which the author, a fellow special needs mom, speaks about how she is often frustrated by people who refer to her as a good parent simply because her child has special needs. I've also come across dozens of other articles and blog posts written by special needs parents - many of which are titled "Ten Things NOT To Say To A Special Needs Parent." (Google that phrase and you'll see what I mean.)<br />
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Every time I read one of these articles I can't help but have mixed feelings. Don't all of these articles, while well-meaning, just alienate those people who attempt to verbally come into contact with us? People with good intentions, who just may not have the right words? Are we (as a group) doing ourselves a disservice? <br />
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Say <em>this</em> to us, but <em>don't</em> say <em>this</em> to us. Doesn't it just makes people afraid to say anything at all? <br />
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Now, unfortunately, I know that there exist some genuinely mean-spirited people out there. Like the woman who told a fellow Aicardi mother that she should keep her loud, overexuberant child at home. Or the <a href="http://www.huffingtonpost.com/2013/01/18/houston-restaurant-down-syndrome_n_2506644.html" target="_blank">horrible people</a> who were subsequently kicked out of a restaurant for telling a family whose child had Down syndrome, "Special needs kids should be kept in special places."<br />
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However, these are not the folks to which I am referring. I like to assume that those truly awful "humans" are few and far between, and the majority of people out there are genuinely kind and goodhearted - or at least try to be.<br />
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So, for everyone who may come across this blog post. Please don't worry about the words that come out of your mouth. <br />
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As long as you are well-intentioned, I'm very forgiving.Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com3tag:blogger.com,1999:blog-3484144418832685883.post-5084037361944257972013-10-06T18:07:00.000-07:002013-10-06T19:05:07.186-07:00What a Whirlwind<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/AVvXsEjCKc2xQsrX8QShuhBENbSjPv-FzX7BkRXc-oiPpFiiy6v5ed4M9HwS2Z0vsMm_xwb1UzrhbTIL-NReCZKclwvXZ7yO7qIOd7lgCmbiQza7bE_eb8S4lmH3DotoU9EN9wInwgPopqOVGsyI/s1600/Sadie+pre+surgery.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/AVvXsEjCKc2xQsrX8QShuhBENbSjPv-FzX7BkRXc-oiPpFiiy6v5ed4M9HwS2Z0vsMm_xwb1UzrhbTIL-NReCZKclwvXZ7yO7qIOd7lgCmbiQza7bE_eb8S4lmH3DotoU9EN9wInwgPopqOVGsyI/s320/Sadie+pre+surgery.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie before her VNS surgery</td></tr>
</tbody></table>
What a fall it has been so far! Sadie has been so busy with school starting and all of her other activities, that we simply just haven't had time to provide an update.<br />
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Sadie's VNS surgery occurred in mid-August. The surgery itself was uncomplicated, however, post-surgery was a disaster. What was supposed to be an easy recovery turned into a two day stay in the PICU due to a high heart rate, uptick in seizure activity and vomiting. Luckily, she improved enough by day two to be sent home.<br />
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She was still under the weather the following week, and thus, missed her first day of school. Then a few rough days followed and she ended up back in the ER for excessive lethargy. In the absence of all other signs, the lethargy was determined to be due to a recent increase in one of her seizure medications.<br />
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Once Sadie evened out, her VNS was turned on. Since then, we have been increasing the "pulse" of the device every two weeks. Essentially, the device "zaps" the vagas nerve on a continuous cycle - in Sadie's case, every 5 minutes. The device also comes with a magnet that can be used to "swipe" the device when we detect the onset of a seizure. We keep the magnet velcro-ed around her ankle - which we joke looks like a house arrest bracelet. We are hesitant to make an initial assessment, but so far Sadie seems to be benefitting from the VNS therapy. (I always say that with caution, because she does have a tendency to go sideways once we declare she's doing well.)<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA_XdSEKuJNS3Tj_An4hmdsivs4TkU4OBXKa1xBFsCoeVwQd_qjfLipD1RRwJKmw-OXgcA-7TaqfHi47_7ontOE-5WBTOnYEGjo_r22UC65EMl5OSzoo0nA2m6EJ3E6m8qArhyAfY3BJdl/s1600/Sadie+magnet.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA_XdSEKuJNS3Tj_An4hmdsivs4TkU4OBXKa1xBFsCoeVwQd_qjfLipD1RRwJKmw-OXgcA-7TaqfHi47_7ontOE-5WBTOnYEGjo_r22UC65EMl5OSzoo0nA2m6EJ3E6m8qArhyAfY3BJdl/s320/Sadie+magnet.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie's VNS magnet. </td></tr>
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We also got a bit of not-so-good news this month. I had noticed that she was coughing a bit more following her oral feedings. To rule out aspiration, I asked for a repeat swallow study. Well, as suspected, she is now aspirating some of her thick purees. The feeding therapists indicated that it is no longer safe to feed her orally. While this is a real disappointment, the most important thing is to keep her safe and not risk pneumonia - so she will now get the entirety of her calories via feeding tube. The therapists did say that there is a possibility that swallow skills may improve as seizures improve - so in the meantime, we are working on oral motor activities to keep those muscles strong. <br />
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Now onto some good news. This school year has been wonderful for Sadie thus far. As I've mentioned previously, she attends a school for special-needs children in Palatine, IL five days a week. I cannot say enough good things about her school. It's such a relief to know that she is cared for so well during the school day.<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwhLWF2MJgmrL5OAp7Pq2BBlQEFXKp3C-38bj3eFOZF9G-dTF_B_seHAEb_ojg8EaocqYgwHha8Hi27iNnOpLcFyYedF-DCWpANUzhAZFXwLWf595-ky5JOYPtsnHZy6ZXXtzoEPqRugcv/s1600/Touchdown+Jesus.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/AVvXsEjwhLWF2MJgmrL5OAp7Pq2BBlQEFXKp3C-38bj3eFOZF9G-dTF_B_seHAEb_ojg8EaocqYgwHha8Hi27iNnOpLcFyYedF-DCWpANUzhAZFXwLWf595-ky5JOYPtsnHZy6ZXXtzoEPqRugcv/s320/Touchdown+Jesus.jpg" width="156" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tailgating at Notre Dame. <br />
Touchdown Jesus, no thanks, <br />
would rather sleep!</td></tr>
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Sadie has also been growing like crazy and is quickly growing out of her pediatric wheelchair. She was just fitted for a new chair - which I'm excited to hear comes in pink! However, along with the new wheelchair fitting comes the inevitable fact that it will be much more difficult to lift this new chair in and out of the van - making the purchase of wheelchair-accessible vehicle more pressing. We are continuing conversations with local and national vendors to determine which van is best for us.<br />
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We've also been blessed in the past few months to have found a CNA who watches Sadie overnight four nights a week. As you know, sleep has never been her strong suit. We are now at 3 1/2 years of a child who doesn't sleep through the night. Unfortunately, she still has multiple seizures during the night that awaken her. Our CNA keeps a close eye on her overnight - monitoring seizure activity, changing diapers, repositioning - and awakens us if there is any problems. She has been a godsend. Who knew what a difference sleep makes! <br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLcXF0REG-CUnMeyvZUsiyxiRCV9B44e7QNfyqun_haGutvLhBBJODQyN78uHWL6LQ_NQHe5k1A_qmvn1-_PuHBAVEAU3bcYfKQtXEtvv4pQiFXYvoEyXQ7OqufFGR1TuZ4Xoz7B9tlvvN/s1600/Shedd+Aquarium.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLcXF0REG-CUnMeyvZUsiyxiRCV9B44e7QNfyqun_haGutvLhBBJODQyN78uHWL6LQ_NQHe5k1A_qmvn1-_PuHBAVEAU3bcYfKQtXEtvv4pQiFXYvoEyXQ7OqufFGR1TuZ4Xoz7B9tlvvN/s320/Shedd+Aquarium.jpg" width="320" /></a>In addition to everything else going on, we've taken Sadie out and about quite a bit these past few months. Last month, she visited Daddy's alma mater, Notre Dame, for her first tailgating experience. Despite all the talks and preparation for the visit, she decided she'd rather nap than tailgate and slept through the entire visit! We also took her back to one of her favorite places, Shedd Aquarium, to see the sea animals - <br />
and her favorites...the jellyfish! <br />
<br />
We are always a bit nervous as we approach cold and flu season. So, we'll do our best over the next few months to keep miss Sadie healthy. We're also hoping that the VNS therapy will continue to show good results for her seizures. Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com2tag:blogger.com,1999:blog-3484144418832685883.post-43331019294379686772013-07-30T06:03:00.000-07:002013-07-30T06:03:01.787-07:00The World Through Disabled-Colored GlassesSadie and I recently found ourselves with a few hours to spare between doctor appointments. One great thing about the Children's Hospital's location in downtown Chicago is that any type of food you desire can be found within a 2-block radius. I had been craving Thai, so I was excited when my smart phone informed me of a Thai place just around the corner - yippee! <br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHbz94Ttcv9T-lHkbNX-TvUUc_j7SstJMUiLa1QCN871IHfXI9wJn40ycjM5DYB1AGXzzxlZEMR68KAfzol7YQEmfHlmJBjICawrw8CWosgElEHWyTaNvwMQM_ykPBlFshCyvsoCGg2ozh/s1600/stairs.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHbz94Ttcv9T-lHkbNX-TvUUc_j7SstJMUiLa1QCN871IHfXI9wJn40ycjM5DYB1AGXzzxlZEMR68KAfzol7YQEmfHlmJBjICawrw8CWosgElEHWyTaNvwMQM_ykPBlFshCyvsoCGg2ozh/s200/stairs.jpg" width="149" /></a>However, upon our arrival to the front of the restaurant, I realized that it was not going to work. Stairs. And lots of them - stairs up to the door, stairs up to the super cute patio that would have been a great place for us to sit outside on this lovely day. Bummer. No curry for me and no outdoor patio for Sadie.<br />
<br />
Resigned that Thai would have to wait for another day, I rounded the corner pushing Sadie's chair. OK, I guess Chipotle will have to do. A little sloped ramp into the door, and what do we run into immediately once inside? STAIRS! Ugh...handicapped access to enter the restaurant isn't helpful if you have to navigate stairs once inside.<br />
<br />
Fine. Let's do Potbelly next door. Two nice men open the door for Sadie and I. And, what do we get once inside? Yep. Stairs...again. I'm so frustrated by this point, I am on the verge of tears. The men who opened the door ask if I need help once they notice that I immediately turn to leave. I point out that there is no ramp for us to get to the counter and order food. They seem surprised (and annoyed) by the lack of accessibility as well - although I'm sure it wasn't apparent to them until I brought it to their attention. And, admittedly, these barriers were not at the forefront of my mind either in my pre-Sadie world. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqcNMz_8HOsemQ3DNae2AvyDZI7ATQiaZkutbp5C7OmOOUUY724B5CwPthIsIWRyiNAVPDKYnfXC8ef-LYGIrLZM-Bzz0-GiBXFiTZF1Trd8XWUh1kkY6Kvkj1fiCE0-d6aH-UGIh-WZ-y/s1600/lazy+handicap.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqcNMz_8HOsemQ3DNae2AvyDZI7ATQiaZkutbp5C7OmOOUUY724B5CwPthIsIWRyiNAVPDKYnfXC8ef-LYGIrLZM-Bzz0-GiBXFiTZF1Trd8XWUh1kkY6Kvkj1fiCE0-d6aH-UGIh-WZ-y/s200/lazy+handicap.jpg" width="200" /></a><br />
Once you have a child with a disability, you tend to view the world differently. Curbs, stairs, steps, uneven pavement - once easily navigable, become obstacles. You develop a new disdain for the non-disabled who use disabled parking spots for their convenience. Whose improper use seems to multiply exponentially on cold, rainy days. <br />
<br />
<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/AVvXsEiw_9zQpO_cNlzR8gZaBpcMqNM5ODSI3fA8lT2aHh2n5lEMOQ0Towk1T9w_rmLrpXWK3ZOZKkZ6Z-J7-46XvQkUi_syYzmIiOtb0uVNhU0Sb0ScgAzPEchZNFbaWrzsAkT6gaeex-4aZ_OY/s1600/handicapped+accessible+beach.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw_9zQpO_cNlzR8gZaBpcMqNM5ODSI3fA8lT2aHh2n5lEMOQ0Towk1T9w_rmLrpXWK3ZOZKkZ6Z-J7-46XvQkUi_syYzmIiOtb0uVNhU0Sb0ScgAzPEchZNFbaWrzsAkT6gaeex-4aZ_OY/s200/handicapped+accessible+beach.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A handicapped-accessible<br />
beach in Cape Cod.</td></tr>
</tbody></table>
I've become programmed to scope out restaurants and public places, making note of those businesses that are easily accessible. Accessibility doesn't just mean a ramp or a handicapped parking place. It means automatic doors with push button (that work!), wide aisles, clothing racks that aren't super close together, seating options in addition to booths, low tables (not bar-height), braille elevator pads, TTY phones, etc. <br /><br />I remember meeting a high school teacher in Charlotte who taught a class on diversity. As one of his assignments, he would require students to be in a wheelchair all weekend. I remember thinking what a valuable lesson this would be for everyone. And, got me thinking...maybe there could be some organization that could give a seal of approval to handicapped-friendly businesses? A sticker on the door perhaps alerting the wheelchair-bound person that they will not encounter stairs once entering said establishment? Something like this perhaps? <a href="http://www.jjslist.com/pages/seal_of_approval/158.php">http://www.jjslist.com/pages/seal_of_approval/158.php</a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjELvZo0chAALMN5VPjnO1vDoj6VBoglcs7AKF97QTdHJOY8DHGzFe6gaBgOtxaChi_qeEQqexE53UIBWKIY-WsmJ1cTjwG0zwsiKJ0ceICB84c6u46UeIJWGKnRLXWrTqyoZo-cZwND9xI/s1600/jjslist_com_Disability-Aware_Business_Seal_of_Approval.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="166" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjELvZo0chAALMN5VPjnO1vDoj6VBoglcs7AKF97QTdHJOY8DHGzFe6gaBgOtxaChi_qeEQqexE53UIBWKIY-WsmJ1cTjwG0zwsiKJ0ceICB84c6u46UeIJWGKnRLXWrTqyoZo-cZwND9xI/s200/jjslist_com_Disability-Aware_Business_Seal_of_Approval.jpg" width="200" /></a><br />
It's been 23 years since the <a href="https://en.wikipedia.org/wiki/Americans_with_Disabilities_Act_of_1990" target="_blank">Americans With Disabilities Act</a> was passed, and there still exist businesses who - because the age of the structure in which their business resides - don't have to adhere to the tenets of ADA. (Perhaps they didn't see this - <a href="http://www.slchamber.com/page/sandbox/view/ubet">http://www.slchamber.com/page/sandbox/view/ubet</a> )<br />
<br />
Its just sad that some business owners continue to rest on the loopholes in ADA. It's also unfortunate, because I'm still craving my red curry.Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com3tag:blogger.com,1999:blog-3484144418832685883.post-66004709571954957702013-07-22T19:16:00.000-07:002013-07-22T19:41:35.408-07:00What I Did This Summer<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOtrFUPaIJvgeDSLttZOd2gJ0zE4MtAoRBPat7XHu6J_FoGV4LYphfCBia6gazg72Wc3P6SQBAcRSHmzs9P_TyasmSl9W5X1nSffQZzVFqxHQ6DYhmqX3P9tbtUOqbHWyvCpbf71o19Xt1/s1600/Sadie+art+project.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/AVvXsEiOtrFUPaIJvgeDSLttZOd2gJ0zE4MtAoRBPat7XHu6J_FoGV4LYphfCBia6gazg72Wc3P6SQBAcRSHmzs9P_TyasmSl9W5X1nSffQZzVFqxHQ6DYhmqX3P9tbtUOqbHWyvCpbf71o19Xt1/s320/Sadie+art+project.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie working on an art project <br />
during school.</td></tr>
</tbody></table>
It's been a while since my last blog post - and a lot has happened in that short time. At the end of the last post, Sadie was being treated for pneumonia in the PICU at <a href="https://www.luriechildrens.org/en-us/Pages/index.aspx" target="_blank">Lurie Children's Hospital</a>. She was able to come home in mid-May after about a week in the hospital. She went back to school a few days later. Her regular school year ended in late May, and Sadie started her ESY program (or Extended School Year) in early June. ESY is essentially the same thing as school - same hours, days, etc., but it runs only through the end of June.<br />
<br />
<br />
In early July, we took a short family vacation to a lovely beach house on the east side of Lake Michigan. The weather was great - "Sadie weather," as we call it - mid-70's with a nice breeze. Because Sadie has a hard time regulating her temperature, we try not to take her outside if it is too warm. Sadie got to enjoy the beach for the first time and put her little toes in the sand. She also enjoyed laying on her towel in the shade - a regular bathing beauty! <br />
<br />
The following week, we were preparing Sadie for surgery. For some time now, we had been speaking to her neurosurgeon and epilepsy doctor about placing a VNS (Vagus Nerve Stimulator). I mentioned the device and how it works in a <a href="http://sadiemccann.blogspot.com/2013/02/one-year-ago-hindsight.html" target="_blank">previous blog post</a>. Essentially, it helps to control erratic brain waves through a series of pulses to the vagus nerve. The device also comes with a magnet that can be "swiped" at the onset of a seizure - and has the potential to stop or decrease the severity of a seizure. <br />
<br />
<br />
<table align="center" 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/AVvXsEiPpyRNRi-qrlmfVSMGVA1BGMCWmw44gyOf6IglecoZjkadjncPfhjcCi2F9sLnHjvmFCsT9aieqYCcxg21lsN-2E5CTJByHizrCBrs6j9Nkn3QvFSjciXKQ7AbAi1OQbGcA8jEEJswkPrh/s1600/Beach+Sadie.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPpyRNRi-qrlmfVSMGVA1BGMCWmw44gyOf6IglecoZjkadjncPfhjcCi2F9sLnHjvmFCsT9aieqYCcxg21lsN-2E5CTJByHizrCBrs6j9Nkn3QvFSjciXKQ7AbAi1OQbGcA8jEEJswkPrh/s320/Beach+Sadie.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Staying cool at the beach.</td></tr>
</tbody></table>
However, in typical Sadie fashion, a curveball was thrown at the last minute - and the VNS surgery was changed to a shunt revision procedure. You see, in addition to speaking to the doctors about the VNS, they had also been monitoring her shunt function. Despite multiple shunt taps and MRIs, Sadie's team of doctors wasn't convinced that her shunt was working properly. The MRI continued to show enlarged ventricles - which is an indication of excess fluid in the brain. So, two days prior to her scheduled VNS surgery, the procedure was changed and Sadie underwent a shunt revision.<br />
<br />
During a shunt revision, the doctor checks all the components of the shunt - the catheters into the brain and down into the belly, as well as the valve function. The doctor explained that he knew there was an issue as soon as they opened up the incision, as fluid was pooling around the shunt. This is an indication that the valve was not working the way it should. The shunt valve - which was a fixed valve - was replaced with a programmable valve. With this new valve, the rate of flow can be adjusted if necessary.<br />
<br />
The procedure itself took about 2 hours, and Sadie did great in recovery and was out of the hospital the next day. An MRI is scheduled for this week to see if this new valve is set to the correct setting. But, we are hopeful that this procedure corrected the issue with her shunt once and for all! <br />
<br />
We are anxious to proceed with the VNS surgery. Sadie's seizures are still quite difficult to control. She has now tried 15 different treatments - a variety of medications, ketogenic diet, surgery - and she is still having seizures daily - sometimes more than 20 per day. We are hopeful that the VNS will help control at least some of these seizures. Another Aicardi mom conducted an informal poll of parents, and of the 20 parents who responded to her survey - 50% saw a reduction in seizures by half or greater. Pretty good odds, in my opinion. <br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy9yQcaxR9HfTIRAFa0cQXZsLP0pH6lT0kUzwujko6u8tu1T_2md7Hc3kTIOF4bDtpECKUthmHM4RystAL-rFcJRBUKLkNLRsAdk2KWrNc5cCEtfqzAQ8aEtkejx3HSlUEVerRCqSfDSbS/s1600/VNS+picture.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/AVvXsEjy9yQcaxR9HfTIRAFa0cQXZsLP0pH6lT0kUzwujko6u8tu1T_2md7Hc3kTIOF4bDtpECKUthmHM4RystAL-rFcJRBUKLkNLRsAdk2KWrNc5cCEtfqzAQ8aEtkejx3HSlUEVerRCqSfDSbS/s1600/VNS+picture.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">How a VNS works</td></tr>
</tbody></table>
<br />
While we wait to schedule her VNS surgery, Sadie will again be enrolled in RIC's (Rehabilitation Institute of Chicago) Day Rehab program where she will receive intensive therapy until school starts back up. Three days a week, two hours a day. I heard her give an exasperated sigh as the doctor and I discussed this therapy schedule. However, she progressed so well when she did this therapy post-brain surgery last Spring, I can only <em>hope</em> that it will help her just as much this time around. <br />
<br />
Hope. It's something I've been thinking a lot about lately. As I mentioned, Sadie's seizures are still terrible. I'd be lying if I said there aren't many days when I feel hopeless - as if there is nothing else we can do for her. I do understand that there is the possibility that VNS therapy will not work for her. But, all we can do is HOPE. <br />
<br />
It's this hope that keeps me from staring at the bottom of a bowl of brownie sundae daily. On the contrary, we've been doing our best to stay healthy - (trying to) eat right, getting to the gym, etc. - attempting to stay healthy for HER. But that's a topic for another blog post. For now, we are hanging by our fingernails to those strands of hope. <br />
<br />Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com1tag:blogger.com,1999:blog-3484144418832685883.post-67269491210958897672013-05-16T17:13:00.001-07:002013-05-16T17:13:48.792-07:00In With the New<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/AVvXsEgZG0w2EmNflsngC9NM2nfGHHPJh1lIVpVNmATwwt3a7aBQZT9Q7RLXERd-9aSSR6xRD46HNAQ3N4xGf1lI0EasFfia7F6iBPJ8U4AKqqmT2254FbJq8I9cjtJHfdHWRft6KxEH2gnUakrW/s1600/Sadie+first+day.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZG0w2EmNflsngC9NM2nfGHHPJh1lIVpVNmATwwt3a7aBQZT9Q7RLXERd-9aSSR6xRD46HNAQ3N4xGf1lI0EasFfia7F6iBPJ8U4AKqqmT2254FbJq8I9cjtJHfdHWRft6KxEH2gnUakrW/s200/Sadie+first+day.jpg" width="111" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie on her birthday.<br />
Before her first day of school.</td></tr>
</tbody></table>
It's been a whirlwind of a month for Sadie - turning three, starting school, a birthday party, new swingset, new bed. Lots of changes. I can adjust to change pretty well, but tend to get a little anxious when everything changes at the same time. That's exactly what has happened over the past month. <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/AVvXsEhrZ4UOqNnvqK73GfOhghX9d4WWmcN2kep9Ub_KV1xGHiGRcOAATsGBcunkis8PjzX3D10JjYqtrX9IJsWREc-mkk4Tahj_4O6FZV1CN3wx1-RNbNpeT1hBkrDpK2hmCPSM_gWsKJJm6yg1/s1600/Sadie+after+school.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrZ4UOqNnvqK73GfOhghX9d4WWmcN2kep9Ub_KV1xGHiGRcOAATsGBcunkis8PjzX3D10JjYqtrX9IJsWREc-mkk4Tahj_4O6FZV1CN3wx1-RNbNpeT1hBkrDpK2hmCPSM_gWsKJJm6yg1/s200/Sadie+after+school.jpg" width="111" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie exhausted after her<br />
first day of school.</td></tr>
</tbody></table>
<br />As I've mentioned in previous posts, at the age of three, children with special needs stop receiving therapy through the Illinois Early Intervention program, and are eligible to start receiving therapy services in school. It doesn't really matter when the third birthday is, if it's the last week of school or the first week - they can start right away. Because we didn't want there to be a gap in Sadie's therapy, school started right on her third birthday, Monday, April 29th. <br />
<br />Our school district gave us the choice between two out-of-district special needs schools for Sadie. After visiting both schools, we decided on a public school about 20 minutes from our home. We really liked the staff and the way they worked with each child's individual strengths. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: left; float: left; margin-bottom: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1zerKohoz8SDKQ4eQ9RJkR_zW-5XMMMiH-rVPuzaB12YrYD2Xru00yjAYqmv5PV4inQ8S4AcW2VglSfwIT7Y0JNFe18egUBfn2sNxT-DzVX02XGJteN0v0JxFIKLqWaOYeW68JsLxxVR8/s1600/Sadie+in+Pool.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1zerKohoz8SDKQ4eQ9RJkR_zW-5XMMMiH-rVPuzaB12YrYD2Xru00yjAYqmv5PV4inQ8S4AcW2VglSfwIT7Y0JNFe18egUBfn2sNxT-DzVX02XGJteN0v0JxFIKLqWaOYeW68JsLxxVR8/s200/Sadie+in+Pool.jpg" width="113" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Enjoying pool time at school!</td></tr>
</tbody></table>
Sadie has a nurse specifically assigned to care for her during the school day. The nurse takes care of monitoring seizures, oxygen, feeding, administering medicines and cathing for urine as needed. But she also plays with Sadie throughout the day - attending all of her therapies and even going in the pool with her during swimming time! Sadie is now two weeks in, and I can't say enough good things about Sadie's school, her classroom, and all the nurses, teachers, therapists and aides she works with. Between circle time, music therapy, PT and OT, art projects, and weekly field trips - Sadie is one busy girl! <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjI9MH6tD8hpF2C5m3Pga3tWFu_I5b9jcBZ3LZ68QDJiJRac8XLGtRyiyEIBj1FP0vPlp-Cam16DA_0E9mNd5wjgZfIp0G6a1EmfbCS8ebBlkscClFOeUBPDdenyUdOaH9RCsI20sa9MYrW/s1600/Sadie+birthday+cake.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjI9MH6tD8hpF2C5m3Pga3tWFu_I5b9jcBZ3LZ68QDJiJRac8XLGtRyiyEIBj1FP0vPlp-Cam16DA_0E9mNd5wjgZfIp0G6a1EmfbCS8ebBlkscClFOeUBPDdenyUdOaH9RCsI20sa9MYrW/s200/Sadie+birthday+cake.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie's birthday cake </td></tr>
</tbody></table>
We had a wonderful time celebrating Sadie's third birthday with her friends and family. She got to eat her special ketogenic cupcake, open lots of gifts, and play with all her friends and family. She has also been enjoying her new swingset. The picture below shows her on her new JennSwing, a special needs swing. Sadie's uncle Colin helped set it up in our backyard. Every day, when the weather is warm (which can be hit or miss in Chicago), we take Sadie out on her swing. She really enjoys it, and generally enjoys being outside as well.<br />
<div style="text-align: left;">
<br /></div>
<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/AVvXsEjk1ZfyDaGOs_uGZZWIc9leiBn6nNuNvjZdDchCO4mCrG5HxF4uCpqsfqIBiXVqKdJMlqQB_lBKsZLgLMtRiXlLVI6w_3kjBeSIl7qduNb7wmxSCseoql8rXxWy6sTUyxpBm8xUqhChpGsQ/s1600/Swinging+with+Daddy2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk1ZfyDaGOs_uGZZWIc9leiBn6nNuNvjZdDchCO4mCrG5HxF4uCpqsfqIBiXVqKdJMlqQB_lBKsZLgLMtRiXlLVI6w_3kjBeSIl7qduNb7wmxSCseoql8rXxWy6sTUyxpBm8xUqhChpGsQ/s200/Swinging+with+Daddy2.jpg" width="145" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie enjoying her<br />
new swing.</td></tr>
</tbody></table>
Thanks to two very generous organizations and some special people, we have ramps in and out of our house now too. One out to the backyard, and the other out to the garage - making it easier to get Sadie outside on these beautiful days! Once we are able to purchase Sadie's wheelchair-accessible van, we will no longer have to lift her in and out of the car. Saving her discomfort, and our backs!<br /><br />This month, Sadie also transitioned out of her crib and into her big girl bed! Insurance approved a <a href="http://sleepsafebed.com/" target="_blank">SleepSafe bed</a> for Sadie. Which is, essentially, a hospital bed that doesn't look like a hospital bed. The head and foot of the bed articulate, it has full side rails, and the entire mattress raises and lowers. It will be great for Sadie long-term. <br />
<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/AVvXsEi-8PDQuahLqSMk_z6iaRfeXgSpIUDMFPrmS1YyzJmEV3aB7VRQUAKBQL6s1krcgTCwkQ4RQfgG2nNU3Pd9YGnt1s4azWevbx9KtHnsRT00pr2y4gD44PCTTloX2Do615xlX7oCOGU0xxD1/s1600/SleepSafe-Oak-OpenMASTER.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="155" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-8PDQuahLqSMk_z6iaRfeXgSpIUDMFPrmS1YyzJmEV3aB7VRQUAKBQL6s1krcgTCwkQ4RQfgG2nNU3Pd9YGnt1s4azWevbx9KtHnsRT00pr2y4gD44PCTTloX2Do615xlX7oCOGU0xxD1/s200/SleepSafe-Oak-OpenMASTER.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie's new SleepSafe bed.</td></tr>
</tbody></table>
So it's taken some time to get adjusted to everything new happening in our lives. And, in the midst of all this "new-ness," Sadie suddenly got very sick. She began breathing heavily, needing oxygen at home, and her heart rate skyrocketed. We took her to the ER on Saturday afternoon and as of today, she is still here. She is being treated for pneumonia in the PICU (Pediatric Intensive Care Unit) at Lurie Children's Hospital. I have been posting periodic updates on her <a href="https://www.facebook.com/FriendsOfSadieMcCann" target="_blank">Facebook page.</a> But, things are looking up and we hope to have her out by Friday and back to school on Monday. Keep your fingers crossed and say some prayers that she continues on this positive path!Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com1tag:blogger.com,1999:blog-3484144418832685883.post-72656326488901778842013-03-25T13:54:00.001-07:002013-03-28T19:57:44.960-07:00Alternatives...Alternatives...I've never considered myself to be a proponent of alternative medicine, homeopathic approaches, all-organics, "I only eat meat if it was fed green blades of grass on a spring water-fed farm," etc. However, I've come to realize that a few of these approaches may be helpful when it comes to our little Sadie. <br />
<br />
After doing a lot of research , we've decided to trial Sadie on a blended diet. She will continue on her ketogenic diet for seizures, but we're going to try it with blended "real" foods as opposed to formula. In order for it to remain ketogenic, the recipes will still be high fat, consisting of some heavy cream and oil. But, we'll also be able to add in real meat (chicken, turkey, pork, beef) as well as a variety of fruits and vegetables. <br />
<br />
<br />
<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/AVvXsEgmDqwJVIq2pcvvWGcir0UiX2G78OFC8bpC4X33ShmaJd19ramznLt8vekSq5yuSH0fa57tEOKZ4vwI6ajtohtZHNqtGXPagKPZPPvm9xmGJdlPbEHp55excBTPwAgrJuuvsaOAXrhwS3ci/s1600/complete+tubefeeding.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/AVvXsEgmDqwJVIq2pcvvWGcir0UiX2G78OFC8bpC4X33ShmaJd19ramznLt8vekSq5yuSH0fa57tEOKZ4vwI6ajtohtZHNqtGXPagKPZPPvm9xmGJdlPbEHp55excBTPwAgrJuuvsaOAXrhwS3ci/s1600/complete+tubefeeding.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A wonderful "must read" for<br />
any parent of a tube-fed child.</td></tr>
</tbody></table>
There are a few reasons we're making this switch. As I mentioned in previous blog posts, Sadie's GI motility issues have been getting progressively worse. (Or, in layman's terms, she simply doesn't poo on her own). With the exception of one miraculous day last week, it's been eight months since she's pooped without the assistance of a suppository. She's been to numerous GI doctors, has had a variety of laxative treatments, and recently underwent an anorectal manametry study - which came back completely normal. Our hope is that these GI issues improve with the introduction of real food. Additionally, it will be quite nice to feed her similar things to what we ourselves are eating. For example, this past weekend, we had chicken salad and Sadie "ate" a blend of chicken, celery, cream and oil.<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/AVvXsEjgr_0bsujrpu0AGecNNQ212HdWHDljIm2pGFVHg5G9-nAXSh1ryfhj_ltMsx7byqzySm3SFMbe7_XvBCqh4akqgJUN36iOubW-BWYC6eJnpHHPxmZYBY2-6eVOvy6m54p4S6b5dRKEe9RA/s1600/Blendtec.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/AVvXsEjgr_0bsujrpu0AGecNNQ212HdWHDljIm2pGFVHg5G9-nAXSh1ryfhj_ltMsx7byqzySm3SFMbe7_XvBCqh4akqgJUN36iOubW-BWYC6eJnpHHPxmZYBY2-6eVOvy6m54p4S6b5dRKEe9RA/s1600/Blendtec.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our new Blendtec blender for <br />
blending Sadie's food</td></tr>
</tbody></table>
<br />
<br />
This decision was guided, in part, by a fabulous book called Complete Tubefeeding, which I initially heard of from a few other parents. I now consider it a 'must-read" for any parent of a tube-fed child. While undergoing this research, I learned that the best way to deliver a blended diet through a G-Tube is by using a commercial-grade blender. Commercial grade blenders are able to blend almost any food into a thin, chunk-free consistency that is able to easily be pushed through the opening for the g-tube. We are loving our new Blendtec blender - which I hear is also fabulous for making smoothies (send your recipes my way :). <br />
<br />
In addition to the ongoing GI issues, Sadie still has a few days where she fails to urinate on her own and requires catheterization. Another Aicardi parent (and nurse) mentioned the use of Peppermint Spirits to aid urination. Apparently it can aid in the relaxation of the GI muscles...who knew? So, we have been putting a drop of this oil in her diaper and it does seem to produce results! <br />
<br />
We are also excited to start <a href="http://en.wikipedia.org/wiki/Craniosacral_therapy" target="_blank">Cranial Sacral Therapy</a> for Sadie in the next few weeks. We have heard anecdotally from other parents that while it may seem a bit like hocus-pocus, their children come out of therapy so much more relaxed. Whatever helps Sadie relax, I'm all for! So, we're giving it a try - and I'll be sure to report results as she gets further along. <br />
<br />
Another alternative medicine technique we have been trying is the use of <a href="http://theresanoilforthat.blogspot.com/2010/07/natural-help-for-seizures.html" target="_blank">frankincense oil for her seizures.</a> Seizure control has been an ongoing problem with Sadie. She is still not in a great place after trying 13+ seizure meds. The few nights I've put a drop on her big toe before bedtime, I didn't see any change in seizures, but I figure it can't hurt! <br />
<br />
As for the seizures, we've been trying to hold steady with any changes in her seizure meds, as we await a second MRI to check the functioning of her shunt. When she was undergoing her GI test mentioned above, the hospital took the opportunity to get a full MRI of her brain while she was under anesthesia. <br />
<br />
<br />
<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/AVvXsEh5_AeLshofkPhyphenhyphenmk0ZSD6je60FEw-iMHxZYu4dASVbUH5GWI0kedJbetbB22eQCjIrZ7OEzloISLl-laBvVuySMISbi6kKkwECJuuncdGcoqTAT4jeBX3VF0qmEc2Ovjn4ufYdj__nC0b4/s1600/shunt+series.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/AVvXsEh5_AeLshofkPhyphenhyphenmk0ZSD6je60FEw-iMHxZYu4dASVbUH5GWI0kedJbetbB22eQCjIrZ7OEzloISLl-laBvVuySMISbi6kKkwECJuuncdGcoqTAT4jeBX3VF0qmEc2Ovjn4ufYdj__nC0b4/s1600/shunt+series.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A shunt-series x-ray</td></tr>
</tbody></table>
We received a call at home the evening after her MRI. (You know its not good news when a neurosurgeon calls you after-hours.) The MRI showed her left ventricle was enlarged. This could be an indication that her shunt is not working properly. We went back to the hospital the very next day to get a shunt series x-ray (where they xray down the shunt line). While the x-ray looked normal, the neurosurgeon noticed a lot of gas in her belly. This could have been caused by the intubation during the procedures, or she could just be an abnormally gassy child. <br />
<br />
Either way, the neurosurgeon suspects that perhaps the shunt is not draining properly due to the increased pressure in her belly, and thus is causing the enlarged ventricle. It's crazy how all of the processes in your body are connected. So, tomorrow, Sadie goes in for another MRI to check the ventricle size. Please say some prayers that the ventricle size is decreasing. The poor girl has had enough surgeries in the past few months. Besides, we are hoping to spend Easter with family and not in the hospital. <br />
<br />
Needless to say, when seizures are not good, sleep is not good. We've tried the aromatherapy approach by hanging a bag of lavender on the side of her crib to help with sleep, with minimal results. So, we were excited to learn a few weeks ago that we got initial approval from the state to employ a CNA (Certified Nursing Aide) to watch Sadie overnight four nights a week. After three years of interrupted sleep, I could just cry with delight. <br />
<br />
Finally, we are in the home stretch of deciding between two alternatives for Sadie's schooling. We have toured both schools and think either would be a good fit and equally equipped to handle Sadie's complex needs. For children with special needs, home therapies end at age three and therapy and education continue through the school system. So, Sadie will begin school on her 3rd birthday (April 29th) - yikes! I can't even think too much about it without getting emotional. <br />
<br />
So these are the alternatives we are trying so far for Sadie. We hope they'll work as advertised...just stop me when I pull out the crystals. Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com1tag:blogger.com,1999:blog-3484144418832685883.post-9727187230437644412013-02-27T18:31:00.000-08:002013-02-27T18:31:59.471-08:00The Most Annoying Part...Some people may think that the most frustrating thing about being the parent of a special needs/medically fragile child are the child's needs themselves. The constant fear of hospitalizations, the struggle to reach milestones, the endless quest to find the right mix of medicines. <br />
<br />
However, while these things are indeed frustrating and tiring, what's even more tedious are the day to day struggles that we parents deal with. Here are a few samples of recent conversations. (Names have been changed to protect the innocent.)<br />
<u></u><br />
<u>Medical Supply Company</u><br />
<br />
8 AM<br />
<strong>Mom:</strong> Hi, my daughter's feeding pump doesn't seem to be charging. <br />
<strong>Rep:</strong> I'm so sorry about that. I can get another pump out to you today.<br />
<strong>Mom:</strong> Great. How quickly will it arrive? She uses the pump for lunch around 1 pm. <br />
<strong>Rep:</strong> No problem, the pump should be there in 3-4 hours, so no later than noon. <br />
<strong>Mom:</strong> Great, thanks.<br />
<br />
12:30 PM<br />
<strong>Mom:</strong> Hi, I'm calling about a replacement feeding pump that should have arrived by noon. <br />
<strong>Rep #2:</strong> Sorry, let me check on that. (long pause) Oh, it looks like the replacement pump won't arrive until at least 3 pm. <br />
<strong>Mom:</strong> I was told that it would arrive by noon.<br />
<strong>Rep #2:</strong> Sorry about that m'am.<br />
<br />
<u>Pharmacy</u><br />
<br />
<strong>Pharmacy Tech:</strong> Hi, I'm calling about a refill order that you placed for your daughter. <br />
<strong>Mom:</strong> Yes, I'll be at the hospital tomorrow and can pick up the compounded medicine.<br />
<strong>Tech:</strong> Oh..well, you should have enough of your current medicine to get you through the next 3-4 days.<br />
<strong>Mom:</strong> Yes, I do. But, I will be at the hospital tomorrow and can pick it up rather than go through the hassle of delivering it. <br />
<strong>Tech:</strong> Oh, it's no problem. We'd rather not overlap since the compounded medicine is only good for 28 days...so we'll deliver it to arrive at your home on Tuesday morning. <br />
<strong>Mom:</strong> OK. That's fine. <br />
<br />
(Next day)<br />
<strong>Tech:</strong> Hi m'am. We have your daughter's medicine here for you to pick up. <br />
<strong>Mom:</strong> This is Michelle*, right? We spoke yesterday about you delivering it on Tuesday morning. <br />
<strong>Michelle*:</strong> Oh, right...but I saw on our clipboard that it was to be ready today, so we got it ready for today. <br />
<strong>Mom:</strong> Well, I don't know about your clipboard, but we are now home from the hospital, and I'm not coming back to pick it up. You'll have to remake it and deliver it for Tuesday. <br />
<br />
<u>Prescription Drug Benefit Company</u><br />
<br />
<strong>Dad:</strong> Hi, I'm calling about my daughter's compounded solution of Prevacid. It seems that the Pharmacy is having trouble running it through insurance because of a specific ingredient they have to use. <br />
<strong>Rep:</strong> Which ingredient? <br />
<strong>Dad:</strong> Ironically enough, it's just purified water. They can't use any of the sugary syrups due to my daughter's special diet, and the other ingredient - sodium bicarbonate - is on backorder. So they just want to substitute purified water. However, your computer system is not accepting the purified water as an approved ingredient. <br />
<strong>Rep:</strong> You are right, the computer is not telling me it's an approved ingredient. <br />
<strong>Dad:</strong> What is your common sense telling you? <br />
<strong>Rep:</strong> I'm sorry sir, the pharmacy will have to fax in the label for the purified water and our pharmacist here will have to approve it and an NDC code needs to be entered into the computer for it to be approved. <br />
<strong>Dad:</strong> Can't you just put an override in the system so my daughter can get her medicine? <br />
<strong>Rep: </strong>I'm sorry, we can't do that.<br />
<strong>Dad: </strong>How about I run a bottled water over to the Pharmacy for them to use? <br />
<strong>Rep:</strong> I'm sorry sir, this is our protocol and it will take at least 15 days to get this resolved. <br />
<br />
(15 days later)<br />
Dad recaps conversation above.<br />
<strong>Rep:</strong> I'm sorry it seems there is no way to get this entered into our computer. <br />
<strong>Dad:</strong> Really? We did everything you said. The pharmacy sent the information, and you're still not able to approve it?<br />
<strong>Rep:</strong> We just can't get it in the computer as an approved ingredient. <br />
<strong>Dad</strong>: So, you're telling me that because your company can't figure out a way to get it in your computer my daughter must go without her medicine. <br />
<strong>Rep:</strong> I'm sorry, sir.<br />
<br />
<br />
Add about thirty other similar conversations and there you have it...the most annoying part. <br />
<br />
Note: A third character, Inner Monologue, has been left out due to the dialogue being laced with profanity. <br />
<br />
Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com8tag:blogger.com,1999:blog-3484144418832685883.post-50623959190198404252013-02-21T17:49:00.002-08:002013-02-21T17:49:27.031-08:00One Year Ago. Hindsight.<div class="separator" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHGZMBQ84Xi_0csd_-UyOY2MQP1uo_p_SBUZI2S0PnZz7W_ZAjDjtCfB925yXMAC2xB1YekPRm6PjoMb_CCylZpBSMfbgpIWW72Q5aPTC7NlORSwVH50-UKP4QBgRIp92F7eN8UUJ_ZPq4/s1600/Sadie+surgery+beeper.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><br /></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHGZMBQ84Xi_0csd_-UyOY2MQP1uo_p_SBUZI2S0PnZz7W_ZAjDjtCfB925yXMAC2xB1YekPRm6PjoMb_CCylZpBSMfbgpIWW72Q5aPTC7NlORSwVH50-UKP4QBgRIp92F7eN8UUJ_ZPq4/s1600/Sadie+surgery+beeper.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHGZMBQ84Xi_0csd_-UyOY2MQP1uo_p_SBUZI2S0PnZz7W_ZAjDjtCfB925yXMAC2xB1YekPRm6PjoMb_CCylZpBSMfbgpIWW72Q5aPTC7NlORSwVH50-UKP4QBgRIp92F7eN8UUJ_ZPq4/s320/Sadie+surgery+beeper.jpg" width="179" /></a>One year ago, we were preparing for what would be the biggest procedure of Sadie's life. On February 23rd, 2012, she had part of the right side of her brain removed. Similar to a hemispherectomy, the surgery removed her right frontal and parietal lobes of her brain. The hope was that by removing these areas of seizure focus, she would experience fewer seizures and have a better quality of life. The full surgery story can be found <a href="http://sadiemccann.blogspot.com/2012/03/long-februarys-journey-into-march.html" target="_blank">here</a>. <br />
<br />
It feels a little surreal to be approaching the one-year anniversary of her surgery. In some respects, it feels like it happened so long ago. It's been a rough year for Miss Sadie - a long recovery in Cleveland followed by two subsequent brain surgeries - a <a href="http://sadiemccann.blogspot.com/2012/08/where-to-begin.html" target="_blank">cyst fenestration in August</a> to alleviate hydrocephalus, and a <a href="http://sadiemccann.blogspot.com/2012/12/redefining-rare.html" target="_blank">shunt placement in December </a>when the hydrocephalus returned. <br />
<br />
We knew going into the surgery last year that there could be a range of outcomes - anywhere from significant reduction in her seizures to no reduction. While we did see some initial reduction in the months following the surgery, the seizures seem to have found a new focus area on the other side of her brain. <br />
<br />
Is this disheartening, yes. Does it make us question our decision? Of course. But we know that these are the unfortunate decisions that we as parents of a medically fragile child have to make in order to improve her quality of life. They are decisions that we wish we never had to make. We simply have to move forward and continue to do everything we can to make sure she has the best life possible. <br />
<br />
On that note, a bit of good news is that her pee strike seems to be coming to an end - yay! After having to cath every four hours for a few weeks, she finally decided to start peeing again on her own. I was never so happy to see a wet diaper. Champagne was popped and celebration ensued. She is now peeing on her own about 90% of the time. There have been a few times every other day or so, when we have to go in to get the pee, but it seems that her bladder has regained it's function. <br />
<br />
Ultimately, who knows why she started retaining her urine. Although the pee strike seemed to coincide with her treatment on the seizure medication, Banzel. While urinary retention is not a listed side-effect, Banzel proved to be an awful medicine for Sadie. It intensified her acid reflux - causing her to vomit a few times and actually seemed to make her seizures worse. Once we started weaning her off the medicine, she had fewer seizures. Case made that every girl with Aicardi Syndrome is so different, as Banzel has been a great medicine for many of Sadie's Aicardi sisters. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG9hh4lmOMsnTGhDTJy9VEeFBYRHZHthLX6Fk4FxvIC3HCS91-ofap0K8YvnftgcR6oA921HZip2YY3hPiVelK0coF3u5GEPmsftCA1UMymtNmAnzt9p21YGpxaY8fOSEUEWdkJSa7YvE1/s1600/Sadie+cotreat2.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG9hh4lmOMsnTGhDTJy9VEeFBYRHZHthLX6Fk4FxvIC3HCS91-ofap0K8YvnftgcR6oA921HZip2YY3hPiVelK0coF3u5GEPmsftCA1UMymtNmAnzt9p21YGpxaY8fOSEUEWdkJSa7YvE1/s320/Sadie+cotreat2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Activating her light box during therapy</td></tr>
</tbody></table>
While the pee issues seem to be getting better, the constipation issues continue. We are following the treatment plan of Sadie's GI Motility Specialist who has ordered an a<a href="http://www.motilitysociety.org/patient/pdf/Anorectal%20Manometry%20Patient%20Information%208%205%202005.pdf" target="_blank">norecal manometry study.</a> She will undergo this test next week to determine whether her muscles "down there" are operating properly to pass stool. Fun stuff. <br />
<br />
Another bit of good news, is that Sadie completed her steroid treatment a few weeks ago - whew! We were hoping that getting her off steroids would help with her sleep issues. Unfortunately that does not seem to be the case. As a matter of fact, her sleep patterns have been getting progressively worse lately. She has been a bit hyperactive lately and is unable to nap during the day. At night, she is able to get to sleep, but staying asleep has been an issue. On a typical night, she is up between 3-6 times. The entire house is sleep-deprived. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: left; float: left; margin-bottom: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy9yQcaxR9HfTIRAFa0cQXZsLP0pH6lT0kUzwujko6u8tu1T_2md7Hc3kTIOF4bDtpECKUthmHM4RystAL-rFcJRBUKLkNLRsAdk2KWrNc5cCEtfqzAQ8aEtkejx3HSlUEVerRCqSfDSbS/s1600/VNS+picture.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/AVvXsEjy9yQcaxR9HfTIRAFa0cQXZsLP0pH6lT0kUzwujko6u8tu1T_2md7Hc3kTIOF4bDtpECKUthmHM4RystAL-rFcJRBUKLkNLRsAdk2KWrNc5cCEtfqzAQ8aEtkejx3HSlUEVerRCqSfDSbS/s1600/VNS+picture.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">How the Vagal Nerve Stimulator (VNS) works</td></tr>
</tbody></table>
We had been holding off on investigating the sleep issue in great depth, thinking that the sleep problems were related to her seizure activity - hoping that better seizure control would equal better sleep. After almost three years, and only a handful of nights where she's slept the entire night - we're ready to pursue an in-depth sleep analysis. More to come on that. <br />
<br />
We have also scheduled an appointment to discuss a <a href="http://www.webmd.com/epilepsy/vagus-nerve-stimulator-for-epilepsy" target="_blank">Vagal Nerve Stimulator (VNS)</a> for Sadie. A VNS is like a pacemaker for the brain - helping keep the brain waves from getting too crazy. VNS has been a highly effective tool for girls with Aicardi Syndrome, and we can only hope that it is just as helpful for Sadie. <br />
<br />
So, lots going on in Sadie-Land. She is back in the swing of things with all of her therapies. And overall is more alert and attentive - giving out lots of smiles, which makes this crazy journey a lot more enjoyable!<br />
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<br />Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com1tag:blogger.com,1999:blog-3484144418832685883.post-7977729723887603442013-01-25T18:40:00.000-08:002013-01-25T18:58:07.224-08:00A Rocky Start<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/AVvXsEjloNLv0tY7trijWuEz-aXElE3CjnGxNE470ulioS1rLCafrC9g9c0V2LiAJ6QPzDOwq8Tq45oUSP-LJkQ53XTAAWu8fJupERi8I-9OnIhwlAbSkFllOTxB3acxw9aEe0kMP5hUKjEMj6DU/s1600/Sadie+EEG2.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/AVvXsEjloNLv0tY7trijWuEz-aXElE3CjnGxNE470ulioS1rLCafrC9g9c0V2LiAJ6QPzDOwq8Tq45oUSP-LJkQ53XTAAWu8fJupERi8I-9OnIhwlAbSkFllOTxB3acxw9aEe0kMP5hUKjEMj6DU/s320/Sadie+EEG2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie with her EEG leeds (and bow) on.</td></tr>
</tbody></table>
Well, 2013 started off quite rocky for Miss Sadie. We were hoping that we would start to see a decrease in seizure activity after her shunt was placed. Unfortunately, that's not what happened.<br />
<br />
Let me back up a bit. Sadie went in for shunt surgery on December 27th. The surgery itself went quite smooth, lasting only about 45 minutes. Post-surgery, she wasn't herself and seemed to be a bit uncomfortable. Despite pain meds, she had a restless night and was quite twitchy. A CT scan showed no issues with the shunt, so the docs ordered an EEG to check for seizure activity. About 20 minutes into the EEG, she had a big seizure - probably the scariest one I've seen to date. Sadie stopped breathing twice, turned an awful shade of blue, and oxygen levels dipped to 40% both times. A slew of nurses rushed in to administer oxygen. She seemed to come out of it fine, but it was quite scary nonetheless.<br />
<br />
The EEG showed two focal seizures had occurred during her cluster of infantile spasms. Emergency seizure meds were administered, which calmed her brain down. The next day she was back to herself and was discharged from the hospital. <br />
<br />
As I mentioned, our hope was that the shunt placement and subsequent fluid decompression in her brain would result in fewer seizures. Unfortunately, the seizures just continued to escalate in severity and frequency, until finally I wasn't sure if she ever fully recovered from one seizure before another started. On January 8th, we decided that we weren't comfortable managing this at home any longer and took her to the ER. <br />
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<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/AVvXsEj8XNT6p2jY4CAjdWH_3P3rllDVFIcPVn7XIBhI5GKsTKkb2sZKY6FQ5R__uBnaTRF8aH9BmUT0dmk3IULT94p9mFzqeOHY_AHFP9iuF-kSFzx1NVWtiVgvBCcohKET0oGDM015d9zkodxe/s1600/Sadie+hospital+smile2.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/AVvXsEj8XNT6p2jY4CAjdWH_3P3rllDVFIcPVn7XIBhI5GKsTKkb2sZKY6FQ5R__uBnaTRF8aH9BmUT0dmk3IULT94p9mFzqeOHY_AHFP9iuF-kSFzx1NVWtiVgvBCcohKET0oGDM015d9zkodxe/s320/Sadie+hospital+smile2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In the hospital bed with her angel doll.</td></tr>
</tbody></table>
Ultimately, she was in the hospital for a total of twelve days. The shunt was fully examined and was functioning properly. So...the question remained, what was causing the seizure increase? A full evaluation was run - CBC blood counts to check for infection, nasal swabs to check for signs of respiratory viruses, urine samples, chest x-ray, etc. No evidence of infection or viruses were found. In fact, other than the relentless seizures, she seemed to be perfectly healthy. <br />
<br />
The doctor concluded that perhaps movement of some of the brain tissue was causing seizure activity, either that or she simply needed a tweak to her seizure medicines - or some combination of both.<br />
<br />
The Epileptologist on hospital service happened to be Sadie's own doctor, who knows her quite well. She was able to quickly evaluate Sadie and recommend a course of action. She started her on a four-week course of high-dose steroids, Prednisone, to calm seizure activity. She also put her back on Dilantin - a medication that has seemed to work successfully for Sadie in the past. Additionally, we increased the dosage of a few of her daily seizure medicines, including a new medicine that she recently started, Banzel.<br />
<br />
Over the twelve day hospital stay, she went from seizing almost non-stop, to having a few seizures an hour, to a seizure every few hours. While this may still seem like an awful place to be (and trust me, it is...) she's in a much better place now than when she entered the ER. <br />
<br />
<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/AVvXsEgcaha37ZUwstKewxTna6f6Ykt2_eNv9iXOA38XUTZKHtY5zjo_NFBBM6DchQ7mSwNNbnCtvINCxhWnGzjN0stracC7rogsClrsmsUve-jV1Qes_GX47NFjJX18yjn5ljQcT9o6Tsai5l2N/s1600/Sadie+Mommy+Daddy.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/AVvXsEgcaha37ZUwstKewxTna6f6Ykt2_eNv9iXOA38XUTZKHtY5zjo_NFBBM6DchQ7mSwNNbnCtvINCxhWnGzjN0stracC7rogsClrsmsUve-jV1Qes_GX47NFjJX18yjn5ljQcT9o6Tsai5l2N/s320/Sadie+Mommy+Daddy.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Smiling at Daddy.</td></tr>
</tbody></table>
Never short on challenges, Sadie decided to embark on a pee and poo strike while she was in the hospital. (Caution, if bodily functions gross you out, stop reading now...) Now, as many of you know, pooing daily has never been Sadie's specialty. Recently, it's taken a liquid suppository every three days to get the girl cleaned out (or have a poo-nami, as we call it). However, while hospitalized, she decided to escalate this to a whole new level. Two suppositories on day 3, two enemas on day 4...and still no poo. It finally took a third suppository on day 7 to get her to have a bowel movement (now escalated to a poo-splosion). How she kept all that inside her for seven days is beyond me. <br />
<br />
Onto the pee situation. Sadie occasionally holds her urine. Sometimes, she'll go as long as 6 hours, then flood through everything she happens to be sitting on - chairs, beds, daddy's lap, etc. However, during this hospital stay, peeing was not something she was interested in. At one point, she held her pee for 16 hours before the nurses cathed her. The urology team then got involved in Sadie's care. They started her on a medicine called Cardura which helps with urinary retention. We were also instructed that we should cath her at home every four hours if she isn't going on her own (oh, joy). Sadie will go in for a urodynamics study in a few weeks to try to get to the bottom of the issue. <br />
<br />
We've been so consumed with Sadie's surgeries and health issues, that everything else has taken a back-seat. We've been working with our local school system to try to determine an appropriate school for Sadie. At the age of 3 (which she will be on April 29th - yikes!), her in-home therapy services through Illinois' Early Intervention program end and she will receive therapy through the school system. We visited a local school in mid-December, which we really liked, but just didn't feel like it was the best fit for Sadie. We will visit a few more schools in February. <br />
<br />
So, we hope that 2013 will begin to trend in a positive direction. Heaven knows we could use a break. And, more importantly, so could Sadie. <br />
<br />
P.S. Like my <a href="https://www.facebook.com/#!/FriendsOfSadieMcCann" target="_blank">Facebook page </a>for more frequent updates on my adventures: <a href="http://www.facebook.com/friendsofsadiemccann">http://www.facebook.com/friendsofsadiemccann</a> Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com2tag:blogger.com,1999:blog-3484144418832685883.post-68652586631575813822012-12-25T11:29:00.003-08:002012-12-25T11:29:54.247-08:00Redefining Rare<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEX9GETtc0oLzia0lBq4mwLBM_TxlZ_tCy2VfrWP_Z5OPPhefZZETkJHlm6NeJq7yCOOin9ifsXJ1uJfK-fOkb3XUV4SKObUv3uX5Yx0yE6Ll4Aja2IjXQm6W1yewckYaYSUPsS7UkmTVL/s1600/Sadie+no+ng.jpg" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" eea="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEX9GETtc0oLzia0lBq4mwLBM_TxlZ_tCy2VfrWP_Z5OPPhefZZETkJHlm6NeJq7yCOOin9ifsXJ1uJfK-fOkb3XUV4SKObUv3uX5Yx0yE6Ll4Aja2IjXQm6W1yewckYaYSUPsS7UkmTVL/s320/Sadie+no+ng.jpg" width="179" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie snoozing after her <br />
g-tube surgery.</td></tr>
</tbody></table>
We always say that Sadie redefines "rare." Her diagnosis of Aicardi Syndrome itself is rare, with only about 800 known instances of the Syndrome in the U.S. Additionally, many of the events that have occurred this year are rare side effects of the Syndrome and her treatment. <br />
<br />
Starting with her <a href="http://sadiemccann.blogspot.com/2012/03/long-februarys-journey-into-march.html" target="_blank">brain surgery</a> at Cleveland Clinic in February, she has experienced a series of these "rare" events. First, the 27-day hospital stay following her surgery, which began with Sadie falling into<a href="http://en.wikipedia.org/wiki/Status_epilepticus" target="_blank"> status epilepticus</a> post-surgery - supposedly a rare side effect, occurring in only about 2-3% of cases.<br />
<br />
Next, during her six month surgical follow up this past August, the docs found scar tissue had formed in the brain causing fluid to build up. Another rare occurrence resulting in her <em>second</em> brain surgery, a cyst fenestration to drain the cyst and open up the brain's natural circulation. The surgery had a 50% chance of success of alleviating the hydrocephalus (fluid buildup). <br /><br />Our hopes were that we would avoid a shunt (artificial drain) placed in Sadie's brain. We thought our prayers had been answered earlier this year when the fluid seemed to be circulating, and the scans showed that the cyst had decreased in size.<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAUpzX9llyW9jlbmsgfYyfiYdARvdJUgqJYICEXFNgdyO9WuytG-YVXbHuPpiGU7vZg0DmalNftTpd1kfV70VxZBOdvIUVMeia03SzTqqNlNstMiMrsKvuWGPU1yOzCYqYQ9jQeXwsKzSS/s1600/Sadie+holiday+dress.bmp" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" eea="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAUpzX9llyW9jlbmsgfYyfiYdARvdJUgqJYICEXFNgdyO9WuytG-YVXbHuPpiGU7vZg0DmalNftTpd1kfV70VxZBOdvIUVMeia03SzTqqNlNstMiMrsKvuWGPU1yOzCYqYQ9jQeXwsKzSS/s1600/Sadie+holiday+dress.bmp" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie in her holiday jumper</td></tr>
</tbody></table>
Recently, Sadie's seizures have been particularly hard to control...getting worse and worse despite medication increases and changes. Additionally, she has not been as visually attentive and her eyes have been a little shaky and downcast. Well, we may have found the cause. The recent scans show fluid is again building up in her brain, now requiring a shunt to be placed. <br />
<br />
If there is a silver lining to this recent discovery, it's that hopefully the hydrocephalus was the cause of the seizure increase and we'll see a decrease once the shunt is placed. Optimistically, we also hope that some of Sadie's movements and behaviors that <a href="http://sadiemccann.blogspot.com/2012/11/facing-reality.html" target="_blank">we thought to be lost</a>, will return.<br />
<br />
Sadie will have her <a href="http://en.wikipedia.org/wiki/Cerebral_shunt" target="_blank">shunt</a> placed at the end of this week. Her fourth surgery of 2012 (Merry Christmas to us!). Dr. Tomita at Lurie Children's Hospital will perform the surgery - a surgery which he explained as "common"...as common as brain surgery can be, I suppose. The surgery will take about 1 hour and if things go well, she could be released the very next day.<br />
<br />
In other news, Sadie's g-tube surgery earlier this month went quite smooth. Despite a little bit of discomfort, she performed like a rock-star and was released the very next day. We can only hope that shunt surgery will go as smoothly. <br />
<br />
Moving into what we hope to be an uneventful 2013, we always pay close attention to the "rare" side effects of treatment and medication. As we now know "rare" means "things likely to happen to Sadie."<br />
Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com2tag:blogger.com,1999:blog-3484144418832685883.post-25620001721791259662012-11-14T19:02:00.001-08:002012-11-14T19:02:17.459-08:00Facing Reality<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/AVvXsEjLnvJDOCVvWKXirnyH4aTtbT6M8c_IHJtbxPWfXOPWAWTofHclAOyVxM81QjNNswY8xnNU1i8s0VQ0dygSWaQuyM9NTWSRDFPmC4DTktHStwZviALPieYimngTB1Rz89VodGKQGeJSz_-g/s1600/Sadie+Owl.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/AVvXsEjLnvJDOCVvWKXirnyH4aTtbT6M8c_IHJtbxPWfXOPWAWTofHclAOyVxM81QjNNswY8xnNU1i8s0VQ0dygSWaQuyM9NTWSRDFPmC4DTktHStwZviALPieYimngTB1Rz89VodGKQGeJSz_-g/s320/Sadie+Owl.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie in her owl costume on Halloween.</td></tr>
</tbody></table>
The morning after Sadie's diagnosis, I remember awakening and hoping that the previous day was all a dream. But I quickly had to face the reality that it wasn't. Coming to terms with reality can be a difficult task for parents of special needs children. It's been particularly difficult lately as Sadie has been struggling in so many areas.<br />
<br />
We've already faced some pretty tough realities - that our little girl may never walk, talk, or develop like a normal child. But for a long period of time, she was still making gains. She smiled, she held a toy for a short time, she swatted at beads on her toy bar, she rolled over for the first time at 18 months! While these might sound like small, insignificant gains to others, they were HUGE for us - and for Sadie.<br />
<br />
I always try my hardest to stay positive, but the simple truth is she no longer does many of these things. Things that we once took for granted - like bringing her hands together, holding and grasping a toy, mashing her little hands against her face, swallowing food, sucking on a bottle. We've had to come to terms that these skills might be lost.<br />
<br />
Who knows why she has regressed in some areas. Maybe it's the burden of multiple seizures (now over 20 per day) catching up with her. Maybe it's an unfortunate side effect of the two brain surgeries. Maybe it's just the nature of her getting bigger and it being more difficult to move her body around. Whatever it is, it hurts my heart deeply.<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo5CrJYiUis7DSfTOFDCIx9iZ9EgskR39e3QZq0fTvedXL-SOq9ErGOPJUjIlh1elxLnbion6bAiuRDMx-Ri4-8K-NSWa-sre3eXeslHjwkjxz_WJ3OZFYIWrmsaC1ioewjmCzj-umjNMs/s1600/gtube.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/AVvXsEgo5CrJYiUis7DSfTOFDCIx9iZ9EgskR39e3QZq0fTvedXL-SOq9ErGOPJUjIlh1elxLnbion6bAiuRDMx-Ri4-8K-NSWa-sre3eXeslHjwkjxz_WJ3OZFYIWrmsaC1ioewjmCzj-umjNMs/s1600/gtube.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is what a G-Tube looks like.</td></tr>
</tbody></table>
Recently, we've had to accept the fact that she needs a feeding tube. Every parent has their own hot button - something that is <em>particularly</em> difficult to accept. For some, it's the wheelchair, or the trach, for us...it was the G-Tube. Her recent swallow study confirmed that Sadie's swallow isn't strong enough to get all her calories orally. The news didn't come as a huge surprise to us. After all, she has had the temporary NG tube in place for almost 6 months now. <br />
<br />
The G-Tube procedure will be done at the end of this month. It pains me that she will undergo yet another surgery this year. But we know that for her health, it's what she needs. On a positive note, we'll never worry about dehydration or getting her medicines. I also learned that you can vent a g-tube, allowing gas to expel directly out of the stomach...who knew? When people ask about it, I tell them it looks like the plug for an inflatable pool toy. I suppose it's a natural way to feed, after all, we all fed that way in utero, right? <br />
<br />
<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/AVvXsEiGqo0RZbkiztipo3TaWvKMlQgMtC0R5MucRYeNSzOI1ng0vdg4Z1TLpXga5cVMmEv4uHKvvJ5geHq_qwH_SNypZuQGF0TBPLrn1ZV7iuNNWcUUt6uYc-QJamUm1iKZjLXt4agWp1Sqn3uv/s1600/wobble+switch.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/AVvXsEiGqo0RZbkiztipo3TaWvKMlQgMtC0R5MucRYeNSzOI1ng0vdg4Z1TLpXga5cVMmEv4uHKvvJ5geHq_qwH_SNypZuQGF0TBPLrn1ZV7iuNNWcUUt6uYc-QJamUm1iKZjLXt4agWp1Sqn3uv/s1600/wobble+switch.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The "wobble switch" recommended for Sadie.</td></tr>
</tbody></table>
Despite my melancholy about the hiccup with her development, Sadie has been keeping busy with her weekly aqua therapy sessions. If she would only keep her eyes open in the warm therapy pool. (She seems to think it's a bubble bath.) <br />
<br />
She also underwent an augmentative communication clinic at our local Easter Seals branch. They recommended a few low tech communication devices for her as well as a wobble switch. The switch can be used to activate toys, play music, make choices, etc. It is easily activated by any movement of her hand or arm. <br />
<br />
So, while there are a few good things happening in Sadie Land...it's been difficult lately to see the forest for the trees. <br />
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<br />
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<br />Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com3tag:blogger.com,1999:blog-3484144418832685883.post-83534156922941080742012-10-29T19:30:00.002-07:002012-10-29T19:30:14.398-07:00Why I Don't Care if You Stare<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtHD3bHwa_pvB1L9ET3TLoFXrTnNgzpBgHg6C_jzBT9-OqgBZdUuibOQJWxa8TK-U9R4G5FQTPUjO8YTRBQM6uElJGLIbUp_AqVePz1_PdiXgSLfVF6L6CmYyxIJH9hEwJ8Td8PO_a7Tas/s1600/staring+tshirt.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtHD3bHwa_pvB1L9ET3TLoFXrTnNgzpBgHg6C_jzBT9-OqgBZdUuibOQJWxa8TK-U9R4G5FQTPUjO8YTRBQM6uElJGLIbUp_AqVePz1_PdiXgSLfVF6L6CmYyxIJH9hEwJ8Td8PO_a7Tas/s320/staring+tshirt.jpg" width="320" /></a></div>
As many of you know, Sadie began her journey to diagnosis with a hunt to find out what was going on with her right eye. I remember leaving one of Sadie's first opthomology appointments alongside a mom pushing a child with Downs Syndrome in a wheelchair.<br />
<br />
Right or wrong, I remember thinking to myself "wow...it could always be worse." I also vividly remember how very put-together this mom looked - tall, attractive, with her hair in a ponytail and wearing yoga clothes. I admired that she looked like she had it all together, despite the challenges she faced. Now, how I wish that vision impairment was Sadie's only disability.<br />
<br />
There are many conversations by parents in the special needs community about others staring at their child. Most of these discussions on blogs and message boards hover around the "rudeness" of the adult or child who is staring at their special needs kid.<br />
<br />
However, my feelings about this differ slightly. Honestly - I really don't care if people stare. In fact, I understand why they do. Sadie looks different. It's not often you see a little 2 1/2 year old girl in a wheelchair with a tube hanging out of her nose.<br />
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Adults usually politely look at her, then look away. Children are a little different, they examine her very closely, and often ask their parents a question about her. "Why is she in that chair?" "What is that cord in her nose?" "What happened to her?"<br />
<br />
A few parents will look at me apologetically, to which I simply smile back at them. I've found that most parents handle these questions quite well. "You see, honey, some kids are in a wheelchair because it takes them a little longer to learn to walk." or "Remember when your friend Isabelle had an NG tube when she got sick? That little girl has one too."<br />
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Parents shouldn't feel like they have to apologize for these questions. Kids are naturally curious. I expect stares and questions from children. I actually find myself quite interested in the parents' responses to these questions. <br />
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And, yes, some adults stare too, and I'm OK with that. There were the two nuns in a hospital lobby recently who couldn't take their eyes off Sadie. I imagined them to be saying a few prayers for her, making a mental note to add "the little girl in the wheelchair" to their prayer list. I admit, sometimes even <em>I</em> stare at another special needs child...try to guess their diagnosis, or to check out their wheelchair or equipment. <br />
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My point is... you never know why people are staring. I found at <a href="http://specialchildren.about.com/od/inthecommunity/a/staring.htm" target="_blank">least one other person</a> who agrees with me. But for every article like this, there are at least ten others written by special needs parents about how rude it is when people stare. And, I can't say that I blame them. After all, when you are "in the club," you become accustomed to fighting - with doctors, school systems, insurance companies...you name it. So the defenses are naturally up. It's simply not the way I like to respond.<br />
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SO, next time I'm in Target - unshowered and lacking makeup - and I see someone staring, I'll just assume the stare is one of admiration. Or, at least, that's what I'll tell myself.Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com5tag:blogger.com,1999:blog-3484144418832685883.post-84874303820192534092012-10-21T15:35:00.001-07:002012-10-21T15:35:15.972-07:00The Next Fire<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/AVvXsEgVyYR6Me4M3-30y-0UFCYa5rGKMVlWLlcQLr-41GOAtJmhiivVRJWSGK4Gz-HWX3Fv9bS5xkO1ScBpWPBHEJF0wGR0-Feo1pZHNFXgovZ9D0lb8kkYlc2hp3OIvexDYYh2XH9Ow1MpwjXw/s1600/Sadie+Smile+in+Chair.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVyYR6Me4M3-30y-0UFCYa5rGKMVlWLlcQLr-41GOAtJmhiivVRJWSGK4Gz-HWX3Fv9bS5xkO1ScBpWPBHEJF0wGR0-Feo1pZHNFXgovZ9D0lb8kkYlc2hp3OIvexDYYh2XH9Ow1MpwjXw/s200/Sadie+Smile+in+Chair.jpg" width="111" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie smiling in her chair</td></tr>
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Life with Sadie is a series of putting out fires. We're always waiting for the next one to pop up. <br />
Luckily, the biggest fire of this Fall was extinguished. We heard back from the docs that the CT scan showed her brain looked stable. No fluid was building up, and the cyst fenestration surgery appeared to be doing it's job - allowing the fluid to naturally circulate again. We all exhaled. <br />
<br />
However, soon after hearing this good news, another set of fires popped up. This Fall began with the first "fire," Sadie's mild pneumonia. She spent a few days on oxygen and recovered quickly. Shortly after finishing her antibiotics for pneumonia, she was diagnosed with a Urinary Tract Infection (UTI). Sadie used to get UTIs frequently when she was younger, but since starting a maintenance course of Bactrim, she has been UTI-free. Well, this one must have been a bit too much for the antibiotic to handle. So...she started another 10-day course. <br />
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In the middle of treatment for her UTI, the third "fire" erupted. Sadie awoke last Saturday morning very lethargic and with a "barky" cough. The pediatrician diagnosed croup. Her oxygen continued to drop throughout the day, until our home oxygen tanks just couldn't keep up anymore. Down to Lurie Children's Hospital we went...<br />
<br />
She was diagnosed with a respiratory virus (rhinovirus) which led to the croup. When adults develop rhinovirus, it manifests itself as the common cold. When Sadie develops rhinovirus, it turns into an ER visit and a two-day hospital stay. By Monday morning she was completely off oxygen and back to herself. <br />
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You see, the problem with these fires is that the embers from one fire can ignite another. Along with an xray of her lungs, the docs xrayed Sadie's belly to get a better look at the GI issues she's been experiencing (as mentioned in the last blog). While the lung xray looked fine, the docs were concerned enough about her belly scan that they called in the surgery team to look for an obstruction. <br />
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Luckily, no obstruction was found, but the belly was full of poo and gas - even though she had a series of bowel movements in previous days. She is scheduled to see a motility specialist to see why her bowels aren't moving like they should be. The docs mentioned that the full belly could have contributed to the breathing troubles as well. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO5l0M6wx7pKKijTM7T-OMpPpbM8zzh9oJMhDXJZ_fhd8X_hu9BYyD3o2aEvjCa-RmbHrkH29PMFpRvJCZ4jQ-5w6uha3D7BmLEfnhBlC2YYuKFIvsBuJJarxT1otaDztw3Zrp92pkwztV/s1600/Sadie+Jellyfish2.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/AVvXsEhO5l0M6wx7pKKijTM7T-OMpPpbM8zzh9oJMhDXJZ_fhd8X_hu9BYyD3o2aEvjCa-RmbHrkH29PMFpRvJCZ4jQ-5w6uha3D7BmLEfnhBlC2YYuKFIvsBuJJarxT1otaDztw3Zrp92pkwztV/s1600/Sadie+Jellyfish2.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Staring at the Jellyfish at the Jellies exhibit!</td></tr>
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And there are some fires just refuse to go out no matter how much water you throw at them (case in point, the seizures). Sadie's seizures have been pretty awful lately. She's still having her typical infantile spasm clusters a few times daily, but has also started to have lip-smacking seizures. Her face gets red and she'll smack her lips and move her mouth around strangely. These seizures have been occurring about 20 times a day. On Thursday, she was back at Lurie for an overnight EEG. In the short time she was hooked up, I pressed the seizure button twenty-two times. Yes, twenty-two times. <br />
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We had been trying to wean her off her heavy medicine load for some time, but it looks like the medicine we were trying to wean (Vigabatrin), may have been doing some good. So, now we are titrating the dose back up. Ugh...it's a horrible game of trial and error. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkSiXxkzsjM2BqURxj1RH8tl7-TcRUpUkNmWTtAhu5YgjnTTetumdEOZYswCk7AlRpLowiWcOJd86UGuXYxOxtBI2fSSZBASJKU5zxd0828XfyAp1T2Wxs6K-5kxDSKaZFfU8sXdlkvXyo/s1600/Sadie+Jellyfish.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkSiXxkzsjM2BqURxj1RH8tl7-TcRUpUkNmWTtAhu5YgjnTTetumdEOZYswCk7AlRpLowiWcOJd86UGuXYxOxtBI2fSSZBASJKU5zxd0828XfyAp1T2Wxs6K-5kxDSKaZFfU8sXdlkvXyo/s1600/Sadie+Jellyfish.jpg" /></a></div>
On a lighter note, in between these illnesses, we were able to get Sadie out to the Shedd Aquarium to look at the fishies! She just loved the jellyfish! I think it was a combination of the dark room and the lit-up aquarium. You can tell just by looking at her face how much she enjoys it. (And, no...sorry folks...we will not be getting jellyfish at home.)<br />
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So...in the meantime, we'll keep working on these fires until we find a way to extinguish them once and for all. Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com1tag:blogger.com,1999:blog-3484144418832685883.post-15784239387573816302012-09-17T18:47:00.001-07:002012-09-17T18:48:20.781-07:00An Eventful Few Weeks<div class="separator" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvm_vEy7O4BBcB4_gwpxygC0FSiH-1DyFNSVQhCRJJijbkAPOPSkQ6PaWu6sz9M0ZtHieI5zmXH_ANprpmzYhmtA319h7wD5trctwmPCkhYtZjPiqCP7jPGQ1aFAMJJfesjBOF_DWB0rMh/s1600/Sadie+smile4.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><br /></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvm_vEy7O4BBcB4_gwpxygC0FSiH-1DyFNSVQhCRJJijbkAPOPSkQ6PaWu6sz9M0ZtHieI5zmXH_ANprpmzYhmtA319h7wD5trctwmPCkhYtZjPiqCP7jPGQ1aFAMJJfesjBOF_DWB0rMh/s1600/Sadie+smile4.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/AVvXsEhvm_vEy7O4BBcB4_gwpxygC0FSiH-1DyFNSVQhCRJJijbkAPOPSkQ6PaWu6sz9M0ZtHieI5zmXH_ANprpmzYhmtA319h7wD5trctwmPCkhYtZjPiqCP7jPGQ1aFAMJJfesjBOF_DWB0rMh/s1600/Sadie+smile4.jpg" /></a>A lot has happened in Sadie-Land in the past month. A few weeks back, Sadie had a series of sleepy days. As you know, sleepy days are few and far between for Miss Sadie. She is lucky if she gets a 30 minute nap each day. So, on a Sunday when she had slept 5-6 hours and barely woken up when roused, we were naturally concerned. <br />
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The following day, I mentioned this sleepy behavior to her Epileptologist during our routine visit. She shot me a concerned look and immediately sent Sadie to medical imaging to check if the fluid in her brain had started to build up again. At this point, we were only 2 1/2 weeks out from her cyst fenestration surgery. <br />
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Thankfully, the results came back fine. At this early stage, the fluid didn't look like it had started to accumulate again, but we wouldn't know for sure until Sadie's 6-week post-op CT scan. However, the doctor did express some concern about the tumor on the left side of her brain. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieI_Fhnwpg1FMiGe8Z_Fj4KKw7R-0I7xuAAz53PxPfUHR08bQjkyaOoFf8RdqGlwwyz6E9UEsefX0hFC5-77mwlYmFq_nwX7KF4dhc7qXQ2UA2wmVgTuFdBgnwYXn_3U49evEssPgATniM/s1600/Sadie+chillin2.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/AVvXsEieI_Fhnwpg1FMiGe8Z_Fj4KKw7R-0I7xuAAz53PxPfUHR08bQjkyaOoFf8RdqGlwwyz6E9UEsefX0hFC5-77mwlYmFq_nwX7KF4dhc7qXQ2UA2wmVgTuFdBgnwYXn_3U49evEssPgATniM/s320/Sadie+chillin2.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chillin' in her stroller during a walk.</td></tr>
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You see, Sadie has a tumor in her left hemisphere called a choroid plexus papilloma. We've known for some time that it was close to the third ventricle in her brain and had the potential to cause hydrocephalus (fluid buildup) should it shift or grow. Prior to her recent brain surgeries, she had been undergoing MRIs every 6 months to check for tumor growth and to ensure it doesn't block the ventricle. The doctor mentioned that THIS imaging showed the tumor to be partially obstructing the third ventricle.<br />
<br />
So, now it seems we have two things to be concerned about - first, that the scar tissues doesn't re-form and cause blockage, and second, that the tumor doesn't get in the way and cause blockage. If either of these occur, then it appears that the only way to fix the problem is by placement of a <a href="http://en.wikipedia.org/wiki/Cerebral_shunt" target="_blank">shunt</a>. We will know for sure if either of these things is occurring after her CT scan scheduled for this Thursday. <br />
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In other news, Mommy and Daddy were able to get away for vacation for a few days. But, despite a long talk with Sadie about NOT getting sick, she decided to do the opposite - just like a toddler! <br />
<br />
On Saturday night, her oxygen dropped and she developed a fever. When her temperature increased a few hours later, Grandma and Aunt Megan decided to take Sadie to the ER for assessment. Turns out, she had a mild pneumonia which was likely caused by aspiration from vomiting a few days earlier. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU2ZC8ix9GsIM909JQJSbyVFoPCemFkKjcseEjKBynC-ZwjSUmHU_YqHVtS3j9daYPbFggTV0ZIoTTGQyGw1aInGaOl0Jp9w9t41L80HjEsnVu6RDgKs6J0XoojlOpcc5m-wDB2BLjwyRy/s1600/Sadie+and+Goo.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/AVvXsEiU2ZC8ix9GsIM909JQJSbyVFoPCemFkKjcseEjKBynC-ZwjSUmHU_YqHVtS3j9daYPbFggTV0ZIoTTGQyGw1aInGaOl0Jp9w9t41L80HjEsnVu6RDgKs6J0XoojlOpcc5m-wDB2BLjwyRy/s320/Sadie+and+Goo.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie looking lovingly at Aunt Megan (Goo).</td></tr>
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<br />
Another issue Sadie has been dealing with lately is slow motility. Or, in layman's terms - she can't poop. In the four weeks since her brain surgery, she has not been able to have a bowel movement without assistance of a suppository. We visited the GI doc this week who gave us some tips on how to get her to go...yes, it's a glamorous life we lead.<br />
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We did receive a bit of good news last week. After a visit with a doctor at the<a href="http://chicagolighthouse.org/" target="_blank"> Chicago Lighthouse for the Blind and Visually Impaired</a> we received confirmation that Sadie has normal vision in her left eye. Yay! We had heard this from her regular opthomologist, but I've become a bit of a sceptic when it comes to doctors, so it is always a relief to get confirmation from another source! <br />
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Please keep Sadie in your thoughts and prayers as we hope for good news out of Thursday's CT scan. <br />
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Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com4tag:blogger.com,1999:blog-3484144418832685883.post-82809526173337681702012-08-23T12:06:00.000-07:002012-08-23T19:20:11.268-07:00A Better Place To BeRecently, Adin and I were looking at a few older posts on Sadie's blog. <a href="http://sadiemccann.blogspot.com/2010/08/from-bad-to-not-so-bad-yay-for-ketones.html" target="_blank">Two years ago</a>, Sadie was hospitalized emergently to start the Ketogenic Diet after having hundreds of seizures per day. <a href="http://sadiemccann.blogspot.com/2011_07_01_archive.html" target="_blank">One year ago,</a> she was hospitalized again to start ACTH after having seizures every five minutes. This year, she's recovered from two brain surgeries. Reading those posts was a stark reminder of everything she has been through in her short life. And how, as soon as you <em>think</em> you are in a better place, reality can knock you back down.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLkYgYDQYVwP5ihoFsejX7U8g8ycUASrmQfq1WR-mHNIM4QoTstxpZ5_9_Yk2zSHXwct0elUtaJ8lexCZehXGKVvvCB1ux5jxfeLVSMC-H1qjmm4Hs6b_WhCO8AlkQAzk9nfoj0q5PIU6V/s1600/Sadie+daddy+pool+time.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLkYgYDQYVwP5ihoFsejX7U8g8ycUASrmQfq1WR-mHNIM4QoTstxpZ5_9_Yk2zSHXwct0elUtaJ8lexCZehXGKVvvCB1ux5jxfeLVSMC-H1qjmm4Hs6b_WhCO8AlkQAzk9nfoj0q5PIU6V/s200/Sadie+daddy+pool+time.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie and Daddy enjoying pool time.</td></tr>
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Now that she is finished with the Day Rehab program at Rehab Institute of Chicago (RIC), she is continuing with her regular therapy schedule, which includes weekly Physical, Occupational, Speech, Vision and Developmental Therapies. I'm pleased to say that despite recent setbacks, she continues to do well in therapy. Moving at a much slower pace than typically developing kids, obviously, but making progress nonetheless. Recently, her Physical Therapist has been working with Sadie in a Lightgait over a Treadmill, getting her to walk a few steps at a time so her body begins to understand what this feels like. <br />
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Additionally, I've been looking to enroll her in aquatic therapy. Aquatic therapy can provide valuable movement for kids who are low tone and struggle with holding up their own body weight. We tried Sadie out in a pool, and she seems to really enjoy it, so we are hopeful we can get her in aquatic therapy soon!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnIWal5emPTkf64SigE3beK7iFrGR5_rvIC4L9YrFUDfCBIg3GW1pd4Wb7zdNGg4F5QCj_ggpykh8eCgY9VjzNjdQztLTsj3V6tgCLTRACW2HgHZW18hgz8Xtpx5RmA5eOweJKRxZsEnao/s1600/Sadie+and+Olivia+at+AIC.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/AVvXsEjnIWal5emPTkf64SigE3beK7iFrGR5_rvIC4L9YrFUDfCBIg3GW1pd4Wb7zdNGg4F5QCj_ggpykh8eCgY9VjzNjdQztLTsj3V6tgCLTRACW2HgHZW18hgz8Xtpx5RmA5eOweJKRxZsEnao/s320/Sadie+and+Olivia+at+AIC.jpg" width="177" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie and Olivia contemplating<br />
the Modern Art.</td></tr>
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In spite of a busy therapy schedule, we have found time to do a bit of traveling this summer, as well as getting out and enjoying some Chicago sights. Sadie and her friend, Olivia, recently visited the Art Institute of Chicago to take in the new Modern Art wing. Sadie didn't quite grasp Modernism, she was much more drawn to the Impressionists - Monet, Seurat, and Van Gogh in particular. <br />
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We also recently traveled to St. Louis for the 2012 Aicardi Syndrome Family Conference. The Aicardi Syndrome Foundation holds this biennial conference for families with affected daughters. It was such a great opportunity to see old friends and meet new ones - quite a different experience than our first conference, which we attended four weeks after Sadie's diagnosis. This time, we found ourselves to be much more social with the other families, rather than just deer-in-headlights<br />
<br />
Medically speaking, Sadie is still being fed the majority of her meals via NG tube. She is allowed a little bit of pureed food each day, which she eats with varying degrees of success. Sometimes she chews well and swallows, other days, the food sits in her mouth and she spits it out. We continue to work with her speech/feeding therapists to improve her eating skills. She was originally scheduled for a repeat swallow study in August, but we've decided to hold off until we find out the results from her recent brain surgery. <br />
As I mentioned in <a href="http://sadiemccann.blogspot.com/2012/08/where-to-begin.html" target="_blank">my last post</a>, the cyst fenestration surgery has a 50% change of being successful at alleviating Sadie's hydrocephalus. Sadie is scheduled for a CT scan in mid-September, which will show whether or not surgery was successful. If the fluid is building up in her brain again, she will have to get a shunt (an artificial drain) placed in her brain. We are saying lots of lots of prayers that the surgery WAS successful and she will NOT need this. <br />
<br />
Prior to her recent surgery, had switched some of her seizure meds to see if we could gain more seizure control. She is finally completely off Dilantin (yay!), and we had begun a taper of Sabril (Vigabatrin). She also started a new medicine, Zonisimide, which we are still hopeful might provide some seizure relief. However, in light of the recent surgery, everything is on "pause." <br />
<br />
Speaking of a better place to be, Adin and I booked our first "alone" vacation since before Sadie was born. We are looking forward to getting away for a few days and know Sadie will be in good hands with Grandma and her Aunt Megan.<br />
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We look forward with a mixture of hope and trepidation as we await the results of her brain surgery. She needs your prayers now more than ever. <br />
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<br />Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com1tag:blogger.com,1999:blog-3484144418832685883.post-44956538499138996382012-08-19T18:50:00.000-07:002012-08-19T18:59:06.879-07:00Where to Begin...<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/AVvXsEiiFjk3M5O4vBIKXI7DbrCdB6iHhp-xMwNutOoR-l4_UUJwF5T3bX_qagnqMdy-xjSen-7MZl6YP-1FjFnf0ra3mYXkt6aTLEQsyTiHaJi_oT9qCgefQDt-OZuogA0NZB1vNPnqe0qX6UFW/s1600/Sadie+post+second+surgery.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/AVvXsEiiFjk3M5O4vBIKXI7DbrCdB6iHhp-xMwNutOoR-l4_UUJwF5T3bX_qagnqMdy-xjSen-7MZl6YP-1FjFnf0ra3mYXkt6aTLEQsyTiHaJi_oT9qCgefQDt-OZuogA0NZB1vNPnqe0qX6UFW/s320/Sadie+post+second+surgery.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie post surgery</td></tr>
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I've been procrastinating writing this post because so much has occurred in the past few weeks. Where to begin...<br />
<br />
I suppose I'll start with the biggest piece of news. In case you hadn't heard, Sadie had a second brain surgery a few weeks ago.<span id="yui_3_2_0_6_1345424893428443"> During her 6 month post-surgery follow up appointments at <span class="yshortcuts cs4-visible" id="lw_1345425385_1">Cleveland Clinic</span>, her MRI showed water in her brain cavity that was unable to drain. This fluid-filled pocket (or cyst) was causing pressure to build up and press against her <span class="yshortcuts cs4-visible" id="lw_1345425385_2">brain stem</span> and other structures in her brain. We saw this clearly on the MRI. </span><br />
<br />
The doctor was not 100% sure why this occured, he said that it is possible that scar tissue from her first surgery formed a membrane over the brain's natural drain causing a buildup of fluid. Apparently this can happen in 5-10% of patients who receive brain surgery.<br />
<br />
The doctor spoke about a few symptoms that we might have seen. Headaches, sleepiness, loss of head control, etc. Obviously, Sadie can't tell us if she has a headache, but we hadn't noticed a change in her behavior. We did, however, notice that her head control hasn't been quite as good and she has been excessively sleepy lately - both things that we had been attributing to a recent change in seizure medicines. <br />
<div>
<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/AVvXsEiF_nUBaaiE7O4fKdzS5T383_Z35LCGVhD6nerDI7h8lw-PmQZTdJY6P5TxkFySo707hRnGiNzHkzuqqCPW1JwBCdsSrCnFJ3v6pQe86CeGUKQvgCRw_RT04-_Um-gCzmShoUgL9URaScMp/s1600/Pager+message.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/AVvXsEiF_nUBaaiE7O4fKdzS5T383_Z35LCGVhD6nerDI7h8lw-PmQZTdJY6P5TxkFySo707hRnGiNzHkzuqqCPW1JwBCdsSrCnFJ3v6pQe86CeGUKQvgCRw_RT04-_Um-gCzmShoUgL9URaScMp/s320/Pager+message.jpg" width="179" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our pager that provided updates<br />
during Sadie's surgery.</td></tr>
</tbody></table>
The doctor layed out a few options for treatment. First, we could choose a cyst fenestration - which essentially is a procedure where they go into the brain to lance the cyst and create a natural hole for the brain to begin to naturally regulate the pressure. The second option he offered was a cyst fenestration and shunt. A shunt is an artificial drain which is implanted in the head and drains the spinal fluid into the belly where it is reabsorbed. The drawbacks of a shunt is the probability that it could malfunction, get infected, etc. This occurs quite often. Lastly, he mentioned that some parents may choose NOT to treat the condition and hope for the best. The obvious drawback to this choice is that this condition can be fatal.<br />
<br />
Adin and I decided that we were not willing to give up fighting for Sadie, and we would obviously choose to treat this condition. Which left us with surgery or surgery as options - not a great choice. So, we chose to do the cyst fenestration and hope that it works to drain the fluid and create the natural circulation of fluid in her brain. Here are some articles we read which describes the procedure in more detail: </div>
<div>
<a href="http://cornellneurosurgery.org/pedneuro/endo_cyst.html">http://cornellneurosurgery.org/pedneuro/endo_cyst.html</a></div>
<div>
<a href="http://www.ncbi.nlm.nih.gov/pubmed/3226511">http://www.ncbi.nlm.nih.gov/pubmed/3226511</a><a href="http://www.ncbi.nlm.nih.gov/pubmed/3226511"></a><br />
<br />
The drawback of the cyst fenestration without a shunt is there is a possibility that it might not work. The doctor told us that it has a 50% chance of working. Sadie will have a CT scan of her brain in six weeks which will show whether the surgery was a success. If the fenestration alone isn't effective, we'll have to consider a shunt.</div>
<div>
<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/AVvXsEg_QgjnKlFFCMMk3I_adylKfWPVBVdMZZIZxAKrnUb_YgU9s8P1w10J4sL5gu7GfqeDYXWpX5Jtl_nGDj2esH0ecAv1mRxhyphenhyphenrXuBD870-guZMoc9xc-bJbqcZq88xHjt_yc1Fhjpipa-S57/s1600/M53.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_QgjnKlFFCMMk3I_adylKfWPVBVdMZZIZxAKrnUb_YgU9s8P1w10J4sL5gu7GfqeDYXWpX5Jtl_nGDj2esH0ecAv1mRxhyphenhyphenrXuBD870-guZMoc9xc-bJbqcZq88xHjt_yc1Fhjpipa-S57/s320/M53.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Doors to the PICU. <br />
I've seen these much too often.</td></tr>
</tbody></table>
<br />
Surgery was performed at Cleveland Clinic by Dr. Bingamin, the surgeon who performed her first surgery. Although this is not what we expected when traveling to Cleveland for follow up appointments, we knew she would be in good hands. <br />
<br />
Unlike <a href="http://sadiemccann.blogspot.com/2012/03/long-februarys-journey-into-march.html" target="_blank">Sadie's first surgery</a>, this inpatient recovery stay was relatively short. She was discharged in three days. She is now recovering at home and is doing quite well. <br />
<br />
Please keep her in your thoughts and prayers throughout the next six weeks as we pray this surgery is successful and she will not need a shunt. <br />
<br />
P.S. In our next blog post, I'll fill you in on all the FUN and exciting things Sadie has been doing this summer (trips to the Museum, the bienniel Aicardi Family Conference, etc.)</div>
Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com0tag:blogger.com,1999:blog-3484144418832685883.post-22400523979250962342012-06-27T18:37:00.003-07:002012-06-27T18:38:11.781-07:00Mixed Feelings<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/AVvXsEimRtX7NDdyavmiopuP59RBPkwJTHkfxgsYuA0BF74BeGJaP6sEOnhzpyr84FyFy0fYX5C6GLhpK4yu0tv4znjNfleNzat7a9x1ued86WXX31tYKW0QulN04z927eLINfgUFwi7UBbO0Hpd/s1600/Sadie+at+Lurie.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/AVvXsEimRtX7NDdyavmiopuP59RBPkwJTHkfxgsYuA0BF74BeGJaP6sEOnhzpyr84FyFy0fYX5C6GLhpK4yu0tv4znjNfleNzat7a9x1ued86WXX31tYKW0QulN04z927eLINfgUFwi7UBbO0Hpd/s320/Sadie+at+Lurie.jpg" width="177" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie on her first visit to<br />
the new Lurie Children's Hospital</td></tr>
</tbody></table>
Last week was the two year anniversary of Sadie's Aicardi Syndrome diagnosis. Last year, I wrote a <a href="http://sadiemccann.blogspot.com/2011/06/one-year-ago-today.html" target="_blank">blog post</a> about what happened that day and our feelings after we heard the diagnosis.
This year, as the anniversary came and went, I found myself having many mixed feelings.
<br />
<br />
I feel <strong>sad</strong> as I think about her diagnosis day, but <strong>grateful</strong> that her diagnosis has taught us what is really important in life.
<br />
<br />
<strong>Anxious</strong> about her upcoming swallow study. (As mentioned in a previous post, her May study showed that she aspirated liquid. Since then, she has received all liquid feedings through her NG tube. Sadie will repeat the study in August and based on the results, she may need to get a G-Tube.)<br />
<br />
<strong>Scared</strong> that she might fail this swallow study.
<strong>Scared</strong> that she might pass this swallow study. <br />
<br />
<strong>Upset </strong>as she has been having really intense seizures lately that scare her and cause her to cry. <strong>Disheartened</strong> that Sadie's current seizure medicines aren't working as well as we'd like. <br />
<br />
<strong>Hopeful</strong> as we start a new seizure medicine this week. (On Thursday, we will start a new medicine called Zonisimide (Zonegran). This medicine has been recommended by a few doctors who have evaluated Sadie. Additionally, it seems to have yielded positive results with other Aicardi girls.)
<br />
<br />
<strong>Sad</strong> as dear friends, a fellow Aicardi family, relocate from Chicago to New York at the end of the month.
<strong>Grateful</strong> that this diagnosis has brought them into our lives.
<br />
<br />
<strong>Pi**ed</strong> as I flip the TV channels and hear the announcer on TLC's "I Didn't Know I Was Pregnant" say, "...even without any prenatal care, the baby came out completely healthy." (I resist the urge to throw a shoe at the TV.)
<br />
<br />
<strong>Sad </strong>(again) as I hear of another Chicago-area family who recently received an Aicardi Syndrome diagnosis for their newborn daughter.
<br />
<br />
<strong>Happy, thankful and amazed</strong> at the generous, kindhearted people we continue to meet through our new church community. <br />
<br />
<strong>Envious</strong> of the old colleague I met for lunch last week who has a fabulous new job. <strong>Yearning</strong> to be back in the career field. At the same time, <strong>grateful</strong> not to have the stresses that go along with juggling work responsibilities.
<br />
<br />
<strong>Blessed</strong> and <strong>thankful</strong> that I am able to stay at home to care for Sadie. <br />
<br />
<strong>Amazed</strong> at how much equipment costs, especially when you put the words "special needs" in front of the description - as we finalize our purchase of Sadie's special needs swing for our backyard and a special needs jogging stroller.<br />
<br />
And finally...<strong>HOPE</strong> that things WILL eventually get better.Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com1tag:blogger.com,1999:blog-3484144418832685883.post-54336508367950631312012-06-07T05:45:00.001-07:002012-06-07T05:45:15.081-07:00Life Expectancy and Thoughts About More Children<div class="separator" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU2VfkRS90_eyRGM_bVDC6TaB1RWlgYWw8WFWnz105_mFRnWPOxWwOBo2H89QZ9mwBbuQIRgXFHqm6JevFweXzyJ8nKwR2WrWIft03HTzdvAPj8hUcmmmJoofmt4U8MMLaLLbj0hLbDEQo/s1600/Balloon+Release.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="132" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU2VfkRS90_eyRGM_bVDC6TaB1RWlgYWw8WFWnz105_mFRnWPOxWwOBo2H89QZ9mwBbuQIRgXFHqm6JevFweXzyJ8nKwR2WrWIft03HTzdvAPj8hUcmmmJoofmt4U8MMLaLLbj0hLbDEQo/s200/Balloon+Release.jpg" width="200" /></a>Life expectancy isn't something most of us sit around thinking about. However, it's been occupying my thoughts recently as I read an e-mail about one of Sadie's Aicardi sisters passing away. In the past six months, at least seven girls with Aicardi Syndrome have passed away. Some older (generally-speaking, 30 years +) and some younger. Most recently, we lost little Ava who was 5 years old. Her mother wrote a very moving and poignant <a href="http://aicardimama.blogspot.com/2012/05/my-little-sunshine-in-sky.html" target="_blank">blog post about Ava's final days</a>. (WARNING - have tissues handy.) </div>
<br />
As hard as it is for us to grasp, we know Sadie will have a shortened life expectancy. Meaning both Adin and I will likely outlive our daughter. I believe the most recent data shows that the average life span for girls with Aicardi Syndrome as 10 years, median of 18 years. This got me thinking - how do you prepare for such grief? Some parents write <a href="http://averycan.blogspot.com/2012/04/my-bucket-list.html" target="_blank">bucket lists</a>, others pray for miracles, some just try to put it out of their minds. Honestly, we don't spend a lot of time dwelling on Sadie's life span, because quite simply, it makes us both too sad. <br />
<br />
Reading these emails about Aicardi girls who have passed is always an emotional blow. Something you've worked so hard to put in the back of your head and ignore, again comes to the forefront. <br />
<br />
Many parents of medically fragile children are all too familiar with calling 911 or visiting an emergency room. Luckily, we've only <a href="http://sadiemccann.blogspot.com/2011/04/looking-at-title-of-last-blog-post-and.html" target="_blank">had to call 911 for Sadie once in her life</a>. Paramedics rushing through the house at 2 am is quite scary. Sadie has been in the ER a number of times in her short life - at one point in time, Sadie was a frequent visitor to the ER at Children's Memorial Hospital. Luckily (or unluckily) some of the ER nurses and doctors even know her there. But, taking her to another ER frightens me quite a bit, especially after reading <a href="http://www.lovethatmax.com/2012/05/could-er-handle-your-child-are-you-sure.html" target="_blank">this article</a>.<br />
<br />
Along those same lines, we get asked occasionally about our thoughts on having more children. Now, we expect and understand when those questions come from well-meaning family members, but it always takes me aback a little when it comes from someone with whom we are less familiar- like the dental hygienist. <br />
<br />Although I do understand people's interest in wanting to know our plan...so here it is. <br />
<br />
Before Sadie was born, we always imagined that we'd have more than one child. After Sadie's birth - even before her diagnosis - I wasn't so sure. Parenting is difficult. Parenting a child with a severe neurological condition and special needs is particularly difficult. The amount of time spent in caring for Sadie is extremely high, so involved that I simply cannot imagine having to care for a second or third child. Additionally, Adin and I often speak about how we want to have time to share with eachother as well (after all, we married eachother for a reason). So, Sadie will likely be our only child. <br />
<br />
I know many who may disagree with this decision, but it is an intensely personal one, and one that we make alone. And after all, God may have a different plan, right? And yes, there is a bit of grief that we experience knowing that we may never have a typically-developing child. But, we consider ourselves blessed that we have Sadie. <br />
<br />
As the parent who wrote the bucket list for her daughter said, "We could go around and cry all day long or we can enjoy the time we have with her." We choose the latter.Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com14tag:blogger.com,1999:blog-3484144418832685883.post-75478043170304950572012-06-03T19:35:00.000-07:002012-06-03T19:39:50.688-07:00Stronger<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/AVvXsEjK_0LS2KfEUCls-a9gaGjLg6_nA0b452EIZLsVOTF32TkmwRYjPzvoxGNep49TflBYSv7iz1DMmlMwWrbF98owSyAQEOiq11Y6ktnwCni3faghUy7o1mS4vfrVeeX3sElUzmIOk6CgsHkb/s1600/Sadie+in+LiteGait.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/AVvXsEjK_0LS2KfEUCls-a9gaGjLg6_nA0b452EIZLsVOTF32TkmwRYjPzvoxGNep49TflBYSv7iz1DMmlMwWrbF98owSyAQEOiq11Y6ktnwCni3faghUy7o1mS4vfrVeeX3sElUzmIOk6CgsHkb/s320/Sadie+in+LiteGait.jpg" width="179" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie weight-bearing in the LiteGait.</td></tr>
</tbody></table>
Sadie is going into her third month of the Day Rehab program at RIC (Rehabilitation Institute of Chicago.) She has been attending RIC for three days a week/two hours a day. During this time, she gets physical therapy, occupational therapy and speech therapy. While it has been an intensely busy few months, we couldn't be more pleased with her progress. <br />
<br />
Her head and trunk control have improved significantly - and she can even sit with very little assistance. During speech therapy, she is working on communication by using the switch - shown in the photo to the right. Knowing her preference for pop music a la Beyonce and Katy Perry, her sweet speech therapist put a photo of Katy Perry on her switch. Each time Sadie presses the switch, we play music and have a dance party.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYFmkNvHzRfYaSmjtVi_ftTyxP1bilxcpPiKRJ-LkdBPMMMBDB31gc0dzARgA4gQGH52HuJHjLX7koDCiUQqmDC7wSnp9RvHnGQtL8FRCni0sneVM6BWbZZjpNkfqJLb5zzajUH9kYBRLq/s1600/Sadie+Katy+Switch.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYFmkNvHzRfYaSmjtVi_ftTyxP1bilxcpPiKRJ-LkdBPMMMBDB31gc0dzARgA4gQGH52HuJHjLX7koDCiUQqmDC7wSnp9RvHnGQtL8FRCni0sneVM6BWbZZjpNkfqJLb5zzajUH9kYBRLq/s200/Sadie+Katy+Switch.jpg" width="111" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie's switch with Katy's photo</td></tr>
</tbody></table>
<br />
Unfortunately, there are a few skills which Sadie used to practice, that she has since lost - like reaching for and grabbing a toy, bringing her hands to midline, and rolling over. Even before her surgery, she stopped demonstrating these skills. We are hopeful that with the help of her therapists that she will be able to regain these abilities. <br />
<br />
In addition to her therapies at RIC, we are still working with her home therapists through the <a href="http://en.wikipedia.org/wiki/Early_childhood_intervention" target="_blank">Early Intervention</a> (EI) program. We recently visited our neighborhood park with Sadie's home PT, where Sadie experienced sitting on a swing and sliding down a slide - with the help of Mommy and Karen, her PT.<br />
<br />
<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/AVvXsEhOhvaXm29GAWZh8iyU9T7G1D6qQy7fUSLGeXplAma6HLCv8HfKfQ0BNuleesim0kxdvc06FOvxTd749iuEDFfSgEDw_mBRwWKdtttf_M_kRLW2F8DPt5R7W5yh4Oo686npswVrmCNQQ73O/s1600/Sadie+Slide.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/AVvXsEhOhvaXm29GAWZh8iyU9T7G1D6qQy7fUSLGeXplAma6HLCv8HfKfQ0BNuleesim0kxdvc06FOvxTd749iuEDFfSgEDw_mBRwWKdtttf_M_kRLW2F8DPt5R7W5yh4Oo686npswVrmCNQQ73O/s320/Sadie+Slide.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie exploring the neighborhood park</td></tr>
</tbody></table>
While she is making great strides with her therapy, Sadie continues to struggle with daily seizures. As I've mentioned, we have seen some improvement post-surgery- particularly with the duration and severity of her seizures. Unfortunately, she's still having about the same number of seizures per day. <br />
<br />
So, we are again in discussions with her doctor about switching up seizure meds. Our first order of business is to try to wean her off a few of these meds (she is currently on five - Vigabatrin, Keppra, Dilantin, Clonazapam, and Neurontin) - not to mention her <a href="http://en.wikipedia.org/wiki/Ketogenic_diet" target="_blank">Ketogenic Diet</a>. Weaning the meds that aren't working will allow us greater flexibility to try new things. The challenge is figuring out what IS and IS NOT working. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRIho1O1YD44TviUggFt-hOYrk4F3UPHoA64to9TIK9Mzbop5UX67txPuILpZqyaMSEU3LCAYT93GM5xo0Dt9cS3f1e1CcdjuX4rGb71O4zVPqCEQeW7csUHhEzU1apttqJkZClEEnMa9A/s1600/Sadie+Zoo.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/AVvXsEiRIho1O1YD44TviUggFt-hOYrk4F3UPHoA64to9TIK9Mzbop5UX67txPuILpZqyaMSEU3LCAYT93GM5xo0Dt9cS3f1e1CcdjuX4rGb71O4zVPqCEQeW7csUHhEzU1apttqJkZClEEnMa9A/s320/Sadie+Zoo.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snoozing at the Zoo</td></tr>
</tbody></table>
Her blood draw a few weeks ago showed that her Dilantin level was a bit low. So, upon her doctor's recommendation, we are going to try weaning that first. If we can get her off Dilantin without upsetting the apple cart, then we are going to try a new medicine called <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000217/" target="_blank">Zonisimide</a> (Zonegran). Zonisimide has been recommended for Sadie by a few doctors. So, we're hoping that it will work well for her. But first...a five-week wean off Dilantin. I never said things happened quickly.<br />
<br />
In the meantime, Sadie experienced her first visit to the Zoo while visiting friends in Milwaukee. Of course, she spent most of the trip napping, but she did see a few of the animals. Mr. Cheetah made an appearance right in front of the window where Sadie was looking - and I think he caught her eye! <br />
<br />
So, as Sadie's therapy sessions at RIC begin to wind down this month, we'll have a bit more free time to enjoy the warm summer weather, and to get her outside practicing some of her new skills! <br />Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com0tag:blogger.com,1999:blog-3484144418832685883.post-8795099278392611352012-05-20T11:41:00.000-07:002012-05-20T12:59:45.004-07:00Out and About With Sadie<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/AVvXsEh3pXzD_61S3PWeaYwOrr2pu1EJKClJ1Iz6qSOgwdewtSc8Uwize6mQzqo3CikDIEsvEwc9y7LChgA9R8QnY5SnRRnM5DScXHi8l9_EQ1XocNrwYt2FBcOeVNYcLz6OHR3fj3Lf9m1hVogs/s1600/Sadie+5K.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="314" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3pXzD_61S3PWeaYwOrr2pu1EJKClJ1Iz6qSOgwdewtSc8Uwize6mQzqo3CikDIEsvEwc9y7LChgA9R8QnY5SnRRnM5DScXHi8l9_EQ1XocNrwYt2FBcOeVNYcLz6OHR3fj3Lf9m1hVogs/s320/Sadie+5K.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With Mommy, Daddy and Godmother <br />
extraordinaire, Megan, at the Epilepsy 5k.</td></tr>
</tbody></table>
<br />
As the weather gets warmer in Chicago, I find myself out and about more with Sadie. I am always a bit apprehensive about taking her places. Primarily because I don't want her exposed to people who are sick (which is always possible when she is in a public place), and second - because I am still learning how to answer questions about her. Now that she is looking more like a typical toddler, people tend to wonder why she isn't walking, talking, etc. - the questions we never faced when she was a baby. To add to the apprehension, now that her NG tube in in her nose, there is a visual alert of a medically complex child. <br />
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I try not to let my own apprehension deter me from taking her out. Although I do tend to have my defenses up slightly when we venture into a public place - which is new for me. It's simply not in my nature to be defensive. In fact, I joke that often times when people say mean things, I don't even realize their malintent at first. Some might call me a "Pollyanna," but I'm OK with that. I'd rather be a bit naive than assume everyone is out to get me...but I digress. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0iPKFEOw8QLQloQkXHE2ailvnRW2Y6TbtD9Hgo9YThoKmUDHD3K6BP9RuM1SJTzkrQfquh__7mXxx9SKOKgmVPLt9idxNSpPpPn_yjHXbketRNT6OtVj7JcGurT4koZv8lgBZF9qGBY2u/s1600/032.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0iPKFEOw8QLQloQkXHE2ailvnRW2Y6TbtD9Hgo9YThoKmUDHD3K6BP9RuM1SJTzkrQfquh__7mXxx9SKOKgmVPLt9idxNSpPpPn_yjHXbketRNT6OtVj7JcGurT4koZv8lgBZF9qGBY2u/s320/032.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Last day in her rear-facing car seat.</td></tr>
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Physically <em>taking</em> Sadie out has been a bit of a chore considering she is off the growth chart for a toddler her age. Literally, she is above the 97th percentile for length. (I suppose they'll have to adjust their scale for her :) Because she is not yet walking, it's up to Mommy to lug her around everywhere - all 34 pounds and 36 inches. For that reason, I've been focused on keeping myself in shape so I am able to better care for her. <br />
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In addition to physically getting her out of the house, there is the additional stress of timing our outings around medicine times - or packing up medicines if needed, weighing/measuring and packing her food, and now the feeding pump, travel bag, stethoscope to check for feeding tube placement, etc.<br />
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As for our outings - I try to get her out for a walk at least once a day. She enjoys the fresh air and takes the best naps outside. Sadie also seems to enjoy shopping, and is a great shopping partner. She is quite content cruising the aisles. I think she is intrigued by the visual stimulation of shopping - lights, colors, etc. Home Goods seems to be her favorite store. This also works quite well for Mommy (much to Daddy's dismay.) The only drawback is that it's quite difficult to push a wheelchair and a shopping cart, so our purchases are limited to what can fit underneath Sadie's stroller (much to Daddy's delight.) <br />
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Because of this, grocery shopping with Sadie is nearly impossible. Although a few weeks ago, I was pleased with myself when I discovered I could push Sadie's chair at the grocery store while filling up two recyclable grocery bags over each shoulder. A <a href="http://swissfarms.com/" target="_blank">drive thru grocery store</a> in my neighborhood would be much appreciated (anyone...anyone).<br />
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Finally, there is always the chance that she could have a big seizure while we are in a public place. Her seizures are still subtle twitches that I doubt anyone would notice unless they were looking closely. However, if she does have a more intense seizure, or one that lasts longer than I am comfortable with, it means heading to the car to administer Diastat. Luckily I've only had to do this on one occasion, and fortunately I was with my sister in law at the time. The only casualty was abandoning a nearly full cart in Target. <br />
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So, despite all these deterrents, I still do take Sadie out and about quite a bit. I think she enjoys it, and I want her to have as "normal" a life as possible...and normal means getting out of the house from time to time. <br />
<br />Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com3tag:blogger.com,1999:blog-3484144418832685883.post-30680347451834830502012-05-14T15:54:00.000-07:002012-05-14T15:54:21.783-07:00An Unexpected Turn<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/AVvXsEhTZpMj_kKIrQl33d16Z98AkAe9tzFHQQpW66eYdUtqelp9dkX0ELK5HiXSjxas-8cSKKR4UZYBOzno50khibCZpu4mMF1IG7JITiXyqoIbxNcvybqaLU6N8z4sR5_wHEOfxCevM1DwMOc0/s1600/120.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTZpMj_kKIrQl33d16Z98AkAe9tzFHQQpW66eYdUtqelp9dkX0ELK5HiXSjxas-8cSKKR4UZYBOzno50khibCZpu4mMF1IG7JITiXyqoIbxNcvybqaLU6N8z4sR5_wHEOfxCevM1DwMOc0/s320/120.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All tuckered out from opening birthday gifts.</td></tr>
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Raising a special needs child is often compared to a roller coaster ride. Along with the many ups and downs are unexpected twists and turns. We experienced an unexpected turn last week during Sadie's swallow study. This was Sadie's third exam to look at her swallow. Her first swallow study showed she aspirated thin liquids, and we've since been thickening her bottles using a gel called "Simply Thick." <br />
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During the swallow study, a substance called barium is added to her food. The barium lights up on the x-ray showing where the liquid is going during the swallow. (You can see a <a href="http://en.wikipedia.org/wiki/Barium_swallow" target="_blank">pretty cool video here</a>.) Her therapist and doctor at the Rehabilitation Institute of Chicago ordered the swallow study to check her post-surgery swallow. We went in assuming a routine appointment - after all, she had a post-surgery bedside swallow examination in Cleveland which she passed with flying colors. She had not been getting sick and her lungs have always sounded clear (two red flags for aspirating). <br />
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However, the results showed otherwise. While drinking her bottle, even thickened, a small amount of the liquid was making it's way into her lungs during each swallow. Even at it's thickest consistency (honey thick), it was still going into her lungs.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4IS94OfT8xQhN1_oa1qqejqerjVoJamicQER6DA-FMOFgW0Gf3GQgqH-1XJfR42sr2UkLZNSDA25RCPq9mG0oWvoRJGHc2fMYfiHstH0iWT1UBoKvvmBMa1ga3okOnlnRClEhKgyLEaiM/s1600/145.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/AVvXsEg4IS94OfT8xQhN1_oa1qqejqerjVoJamicQER6DA-FMOFgW0Gf3GQgqH-1XJfR42sr2UkLZNSDA25RCPq9mG0oWvoRJGHc2fMYfiHstH0iWT1UBoKvvmBMa1ga3okOnlnRClEhKgyLEaiM/s320/145.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sadie eating her breakfast via NG tube.</td></tr>
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Sadie was sent directly to Children's Memorial Hospital for an immediate admission and NG tube placement. (Standard protocol when a child fails a swallow study.) We were told by the pulminology team at Children's that if we had not found the aspiration, Sadie could have come down with a horrible life-threatening pneumonia. And, if she were to continue to drink, the aspiration could cause lung disease. The pulminology docs said that there are over 70 different mechanisms that must occur in the throat to ensure a safe swallow. Seems amazing that all of us aren't aspirating all the time, right? <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh60-c8IuHFxZRx2wmO7UN9b-XA0TVHxYdcNkd4ah8c8Y2_EVgdeS_MksEidUHfBBKjpDvjJNoxmEaSmDT7ivEqRlbbWH67czHABFw17KmkXGWrsuOmsbzr9orxBZFMPfIclSULy_VT0inH/s1600/gtube.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh60-c8IuHFxZRx2wmO7UN9b-XA0TVHxYdcNkd4ah8c8Y2_EVgdeS_MksEidUHfBBKjpDvjJNoxmEaSmDT7ivEqRlbbWH67czHABFw17KmkXGWrsuOmsbzr9orxBZFMPfIclSULy_VT0inH/s200/gtube.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is what a G-Tube looks like.</td></tr>
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So...you may ask, where does that leave Sadie? Well, there are few options for a child who aspirates. The most common being a <a href="http://en.wikipedia.org/wiki/Feeding_tube#Gastric_feeding_tube" target="_blank">G-Tube</a>. Many girls with Aicardi Syndrome also have G-Tubes. In fact, one of Sadie's good Chicago Aicardi friends, Olivia, just got her G-Tube a few months ago. <br />
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In order to mentally prepare for this possible next step, we met with the surgeon this week who would perform the G-Tube operation. He provided us with pros and cons of G-Tubes. The pros being ease of medication administration, hydration, and most importantly - no aspiration. We have spoken to Sadie's team at Children's Memorial who have advised us to take our time with making this decision. They have offered to repeat a swallow study in 3-6 months to see if her swallow has improved. By that point, we can do more research and become more comfortable should the G-tube be the path she must go down. <br />
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Luckily, she is still able to eat pureed food (baby foods), so we've been feeding her her favorite keto-friendly food - mashed banana with butter. While we are disheartened and saddened by another "normal" being taken away from Sadie for the time being, we are grateful that it didn't develop into something even worse. <br />
<br />Cathy McCannhttp://www.blogger.com/profile/15706527360603875000noreply@blogger.com5