tag:blogger.com,1999:blog-67392793847418851832024-03-05T17:02:18.367-06:00Stephanie's PresenceFollow the story of our little girl, the gift of her presence in our lives and how she fights everyday with Mosaic Trisomy 15, Autism, Intracranial Hypertension and Lennox-Gastaut Epilepsy.Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.comBlogger28125tag:blogger.com,1999:blog-6739279384741885183.post-21248433554597021052013-07-04T11:30:00.002-05:002013-07-04T11:38:48.449-05:0017th Annual RBC Cruisin Down The Crescent 10K WalkOn June 9, 2013, my husband, Stephanie and I participated in the <a href="http://www.crf.mb.ca/Blog/post.cfm?Title=RBC%5FCruisin%5Fraises%5F%24170%2C000%21" target="_blank">17th Annual RBC Cruisin' Down the Crescent</a> in order to help raise funds and awareness for the charitable foundation Children's Rehabilitation Foundation. The Rehabilitation Centre for Children has been a great assist for Stephanie this year. Her seizures, intracranial hypertension, and medications have set her back the last few years and her mobility has regressed significantly. However, this year she has already received a $4000 Freedom Concepts Bicycle and a Gait Walker to help her gain some strength and freedom back.<br />
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"<a href="http://www.crf.mb.ca/index.cfm" target="_blank">The Children’s Rehabilitation Foundation</a> is a Manitoba charity, dedicated to helping children with disabilities and special needs be as independent as possible. We are the fund raising arm for the Rehabilitation Centre for Children (RCC). The Centre is an outpatient facility providing rehabilitation services and specialized health clinics for children and youth who live with life-long conditions."<br />
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The overall funds raised that day was $170,000 and I believe we were personally able to raise $360. What a great day of walking, talking, enjoying the beautiful weather and great company. In addition to walking with our close friends Michelle, Dave and their son Brayden, we were also surprised along the walk with a visit from one of Stephanie's weekly respite workers. She was waiting along the walk just to cheer us on and ended up joining us for most of it!<br />
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Just after our walk, we had a great opportunity to meet Janine Hanson, the 2012 Olympic Silver Medalist in Women's Rowing. She was a great encouragement to all the children and adults participating in the 10K walk. We even got a signed card and photograph with Janine! <br />
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Cheers!<br />
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Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com1tag:blogger.com,1999:blog-6739279384741885183.post-70378248011241243192013-07-04T10:23:00.000-05:002013-07-04T10:23:04.554-05:00Special Olympics Manitoba Track & Field 2013I can't tell you how proud I am of my little girl participating in the Special Olympics Manitoba School Track & Field Meet in May 2013. I am a little behind in posting events but you can blame it on my new business!<br />
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Stephanie had a great time and for the first time in my life as a parent (14 years already) I got to open her backpack and find a certificate and track meet ribbons! This might be a standard occurrence for most parents on an annual basis but it was a first for me and it made me teary just knowing she was out there, participating, living life. And to top it all off, the 3 ribbons were all 1st Place!! (*picture my big grin right about now*) 1st place in the softball throw, 1st place in the 25m and first place in the 30m! Here are a few pics of her day...<br />
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Cheers,<br />
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One proud mama<br />
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<span id="goog_840623039"></span><span id="goog_840623040"></span><br />Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com1tag:blogger.com,1999:blog-6739279384741885183.post-89880228392656652212013-04-26T22:58:00.000-05:002013-04-26T22:58:22.335-05:00New Home Business!Okay, I am shamelessly going to promote my latest creative venture in this post, my new home/online business, <a href="http://www.etsy.com/shop/AshleyGabby" rel="nofollow" target="_blank">AshleyGabby Designs</a>. What does this have anything to do with Stephanie and why am I posting this on a blog about her?<br />
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I'll tell you! I used to sell dolls and crafts when I was 18 or 19 at a large department store in Canada known as The Bay (or Hudson's Bay Company). Back then it was fun and I didn't really go anywhere with it. So, since I have put my career on hold for the last year or so, I have started to indulge in my creative side even more. I made birds on a branch for Steph, I actually did some party planning and decorations for her last two birthdays, I started sewing and have my own craft room, I made a doll, etc. etc.<br />
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My husband encouraged me to think about selling some of the projects I was coming up with. Hmm, good idea! We talked about wanting to dedicate the business to Stephanie and other kids like her. We talked about having a signature "item" that could be sold and a portion of the profits would go to awareness or research for one or all of the conditions Stephanie faces. I am still working on that special item but in the meantime, I am making children's play tents - where kids can be kids, I am making some home décor for mom's and dad's, and I am making custom sterling silver jewellery. <br />
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And here is where I get to the point! lol<br />
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The custom jewellery I make includes awareness ribbon and autism puzzle piece stamped sterling silver. You can custom request a piece of jewellery with your child's name or a special inspirational word, and include a ribbon or puzzle piece symbol as well. <br />
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To top it all off, I have named the business <a href="http://www.etsy.com/shop/AshleyGabby" target="_blank">AshleyGabby Designs</a> in honor of Stephanie. She had two dolls, one named Ashley, one named Gabby. When she desperately wanted one of them, she merely told us she wanted "AshleyGabby" and we NEVER brought her the right one first! This is why I chose to leave the name without a space. That's my Steph!<br />
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I am really excited about this new opportunity to focus on Stephanie's well being by being a stay at home mom, while still getting the chance to be productive and creative for my own well being. Please visit my Etsy shop or "Like" my facebook page and don't hesitate to provide feedback about what new items you might like to see! Here are the links:<br />
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Etsy: <a href="http://www.etsy.com/shop/AshleyGabby">www.etsy.com/shop/AshleyGabby</a><br />
Facebook: <a href="https://www.facebook.com/AshleyGabbyDesigns">https://www.facebook.com/AshleyGabbyDesigns</a><br />
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Cheers!<br />
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DarlynDarlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-40543490265985352812013-04-22T11:34:00.000-05:002013-04-22T11:34:46.977-05:00Happy 14th Birthday Stephanie!Wow! What a whirlwind past couple of weeks it's been! As you saw from my last post, Stephanie recently spent a week in hospital while doctors treated her for infection (possible shunt infection). We managed to get discharged last week Saturday, the day before her big 14th birthday party!<br />
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Needless to say she had the most wonderful day with all her favourite people in attendance. In addition to receiving a million gifts and having loved ones around, it was an extra special day for her because she also received a dream cake from Renee Reyes of <a href="https://www.facebook.com/pages/Sugaristic-Expressions-by-Renee/445318398845634?fref=ts" target="_blank">Sugaristic Expressions</a>, courtesy of the non-profit organization <a href="https://www.facebook.com/Icing.Smiles.Canada?fref=ts" target="_blank">Icing Smiles Canada</a>. AND we were on our local news station as well! CTV news crew were interested in covering the story of Icing Smiles Canada presenting it's very first cake in Canada and Stephanie was the lucky recipient of that cake.<br />
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I could not believe the beauty and detail of the cake that was specially made for Stephanie's big day. Renee did an absolutely amazing job and we cannot thank her enough for all the hours of labour and love that went into that cake. Happy Birthday baby girl!!!<br />
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Here is the CTV news clip:<br />
<a href="http://winnipeg.ctvnews.ca/video?clipId=905435&binId=1.1206917&playlistPageNum=4">http://winnipeg.ctvnews.ca/video?clipId=905435&binId=1.1206917&playlistPageNum=4</a><br />
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And a little about Icing Smiles Canada:<br />
<div class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 0pt;">
<span style="color: #433938; font-family: "Garamond","serif"; font-size: 12pt; mso-ansi-language: EN-CA; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-CA;">"Originally
founded in the United States 2010 to create memories for children whose world
is rocked by illness, Icing Smiles, Inc. has grown immensely, with more than
3600 volunteers in 50 states, chapters in Canada and Holland and hundreds of
bakers all over the world anxiously awaiting their opportunity. In the US
alone, Icing Smiles has served more than 3300 children and has more than 500
scheduled for future cakes. It started with one woman, flour, sugar, butter and
love and has since created memories for thousands of families - memories of the
kindness of a stranger, the sweet smells of a special treat, the smiles and
laughs, a normal childhood experience so often stolen from these children.
These memories are why "It is so much more than a cake." </span><span style="color: #433938; font-family: "Garamond","serif"; font-size: 12pt; line-height: 120%; mso-ansi-language: EN-CA; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-CA;">The Canadian chapter was incorporated in December, 2012 and already has
over 100 volunteers across Canada and several requests for cakes from deserving
families."</span><br />
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Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-32544096792082552812013-04-11T13:19:00.001-05:002013-04-11T13:19:39.777-05:00In Hospital...Again.<p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrKK04mkOILNmCWhXT4pdmLbVbK7qItPmAsW-JpR__VLC2Hy6baBx-uFNhh6EC9Lf0HXSOiME38u0NQhqOVOHQcou4sjhnmRgc_wFat5Wg9m5Qa-43wlDmufpZZa82HJYPXPHMOXF960pw/s1600/image-779777.jpeg"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrKK04mkOILNmCWhXT4pdmLbVbK7qItPmAsW-JpR__VLC2Hy6baBx-uFNhh6EC9Lf0HXSOiME38u0NQhqOVOHQcou4sjhnmRgc_wFat5Wg9m5Qa-43wlDmufpZZa82HJYPXPHMOXF960pw/s320/image-779777.jpeg" border="0" alt="" id="BLOGGER_PHOTO_ID_5865655650439752402" /></a></p>Day 5 in hospital. Ugh. On Saturday night Stephanie started to get shivers and a high fever. We thought we would monitor her and see how she did but we were still very concerned because she just had her shunt surgery 6 weeks ago and she could possibly have a shunt infection.
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<br>Most of the day on Sunday she seemed ill and had a low grade fever but no other symptoms. After her midday nap she was burning up again. We headed to the Children's Hospital in Winnipeg. She arrived with a fever of 104 (40). She was taken in immediately and so the process began. We spent the night in Emergency and she was admitted the next day. The concern of course was shunt infection or infection in the cerebral spinal fluid.
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<br>Monday afternoon her shunt was tapped and spinal fluid was collected to test for infection. She was put on two iv antibiotics while we waited for results.
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<br>So now it has been 72 hours since the blood and spinal fluid cultures were started. The results are negative for infection and Infectious Diseases Department is now going to have to decide if she is going to be taken off the antibiotics and monitored for a couple of days or if she will be allowed home on prescription antibiotics.
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<br>The big concern for the hospital is that if she did in fact have some sort of infection, be it shunt/spinal or viral, since she had a few doses of antibiotics before testing, the results might be a false negative. And when the brain/spine are involved, they sure don't take any chances!
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<br>Here's to hoping that we manage to get home for the weekend so that Stephanie can enjoy her 14th birthday party!!!!Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-78460148175927230322013-03-19T22:01:00.000-05:002013-03-19T22:03:27.581-05:00Freedom Concepts BicycleJust a little news that I forgot to share! Stephanie received her new Freedom Concepts bicycle a couple of weeks ago and I forgot to write about it since she was still at home recovering from shunt surgery. Now that she has been back to school this last week and her bike has been adjusted to her body, I can't wait to see her learn to use it!<br />
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I have to thank her school physiotherapist for getting the ball rolling and getting Stephanie this bike. I received news about a month ago that <a href="http://www.presidentschoice.ca/LCLOnline/pcccHome.jsp" target="_blank">President's Choice Children's Charity</a> was going to fund this new bike for her. It's still hard to believe that a kid's "bike" costs upwards of almost $4,000! Well, a bike for a child with special needs that is. So PC Children's Charity funded the bike and it was actually supplied by the <a href="http://crf.mb.ca/index.cfm" target="_blank">Children's Rehabilitation Foundation</a> here in Manitoba. They are a wonderful organization and Stephanie previously had a similar bike loaned by them a number of years ago, before she suffered from vision loss and daily seizures. I am so happy and proud that Stephanie can once again have a little more freedom,something that was slowly being taken away from her over the last 2 1/2 years, something every child should have.<br />
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Once she outgrows the bike or no longer has use for it, we can donate it to another child in need through the Children's Rehabilitation Foundation. What a great way to pay it forward! <br />
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PS. Stephanie, watch the speed limit when you are doing laps in school...and where is your helmet young lady!<br />
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Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-2777872756504872892013-03-14T12:20:00.001-05:002013-03-14T12:23:43.906-05:00New Diagnosis: Lennox-Gastaut Syndrome (LGS)Last week Friday, Stephanie was diagnosed with <a href="http://lgsfoundation.org/aboutlgs.html" target="_blank">Lennox-Gastaut Syndrome</a> (LGS). W<span class="userContent">e saw the neurosurgeon and neurologist on March 8th. Her new LP Shunt is working exceptionally well and she seems to be more "aware" of her environment and is talking more and learning a few new words. She will be weaned off her increased pressure meds and we'll see how she does.</span><br />
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<span class="userContent">Unfortunately, Steph also started having a new kind of seizure last week. The neurologist now had enough information to diagnose Stephanie with Lennox-Gastaut syndrome, among everything else. <span class="text_exposed_show">We finally know that even after our best efforts, we may never be able to rid her of these many different kinds of seizures and the best we can do is reduce the impact as much as possible with medications, the brain surgery she already had and next probably a vagus nerve stimulator implanted in her chest. In addition to the seizures, LGS can also cause cognitive/mental regression, even mobility regression. I am planning to work with her therapists to be a little more aggressive with speech, occupational, and physio therapy. I found video of her from just a few years ago that is of a completely different little girl than who we see today. It really shows how much she has slowed downed and even regressed. It's not always easy to notice these changes in the day to day of raising a child with special needs, especially when medical care has been the number one priority. </span></span><br />
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<span class="userContent"><span class="text_exposed_show">I am a little more heart broken again. One step forward and two steps back, this is beginning to be a theme in our lives. My saving grace is that Stephanie still lives in the moment and enjoys all the small things life has to offer - Miss Piggy, toys, her close friends, snacks, and music. I know she doesn't need much more than this but I so wish I could give her the world! I guess I am going to have to try my darndest to do just that!</span></span><br />
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<span class="userContent"><span class="text_exposed_show">Here's a little excerpt from the LGS Foundation:</span></span><br />
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<span style="font-size: 13px; line-height: 15px;">"Lennox-Gastaut syndrome (LGS) is a rare and often debilitating form of childhood-onset epilepsy. The syndrome is characterized by a triad of signs including multiple seizure types, moderate to severe cognitive impairment, and an abnormal EEG with slow spike- wave complexes. LGS constitutes between 1-4% of pediatric epilepsies and typically appears between the second and sixth year of life.<br /><br />Some of the known causes of Lennox-Gastaut Syndrome include brain injury associated with pregnancy or birth (including asphyxia, low birth weight, and prematurity), severe brain infections (including encephalitis, meningitis and rubella), developmental malformations of the brain, or a history of infantile spasms. In 30-35 percent of cases, no cause can be found.<br /><br />Most children are typically developing normal when first diagnosed, but then begin to lose skills, sometimes dramatically, in association with uncontrolled seizures. Young children with LGS may exhibit behavioral issues, personality disturbances, mood instability, and slowing of psychomotor development. Behavioral disturbances can include poor social skills and attention seeking behavior, which can be caused by the effects of the medication, difficulty interpreting information, or the electric disturbances in the brain. Some children with LGS are prone to develop non-convulsive status epilepticus (a continuous seizure state that is associated with a change in the child's level of awareness). This requires medical intervention to bring it to an end." ~ LGS Foundation<!--$end html$--></span><br />
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<br />Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-68154364958739557632013-02-25T15:41:00.003-06:002013-02-25T15:41:41.481-06:006 Days Post Op - LP Shunt SurgeryOn Tuesday, February 19, 2013 Stephanie underwent Lumboperitoneal Shunt Surgery in order to assist in the drainage of excess cerebral spinal fluid from her brain. There were three incisions - one on her spine where the catheter fed up through her spinal column, one on her side/hip where the actual valve is placed under the skin, and one on her abdomen where the catheter is fed in to her peritoneal cavity to drain the fluid which is reabsorbed by the body.<br />
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Surgery was roughly 2 hours long and she did very well. She woke up from anesthesia without any complications and was trying to sit up immediately. We were transferred to a surgical ward and expected to stay in hospital for about 2-3 days. The first night was a tough one and she was very uncomfortable. It wasn't until 6 am the next day that she finally settled and slept solid all day with the help of morphine. That night she threw up a bit and settled back down. The following morning she was feeling much better and we were even released to go home to continue with recovery. <br />
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Most days since she has been sleeping about 18 hours a day, being up for 2-3 hours a couple times per day. The incisions were closed with dissolving stitches and seem to be healing well. There is some bruising at each site but nothing extraordinary and swelling is minimal. As I write this it is has been 6 days since surgery and today was the first day that she really seemed to be in pain or having some kind of symptoms. I gave her some Tylenol 3, a good rest, and then some Coca Cola (caffeine) to help any low pressure symptoms or abdominal pain she may have been having. The surgeon said signs of infection generally show up around 1 month after surgery, if at all.<br />
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We have a follow up appointment with the neurosurgeon and the neurologist on March 8, 2013 and will find out more about her recovery and future plans for the corpus callosotomy surgery and seizure control.<br />
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Here's hoping that this shunt is helpful for Stephanie by giving her some relief from the high pressure and maybe even some positive progress with her vision! (I have posted pictures in the page on the right.)<br />
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Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-82036455693719741332013-02-08T10:24:00.002-06:002013-02-08T10:26:03.423-06:00Sooner Than ExpectedI was informed a few days ago that Stephanie's shunt surgery is now scheduled for this coming Tuesday, February 12th. She's already had her pre-op physical this week and will meet with Anaesthesia next Monday. The paediatrician put her on antibiotics since he confirmed she also has an ear infection that has been perforated! I am definitely getting nervous and hope she can tolerate the miserable first week of low pressure headaches and surgery recovery in general. The last 6 days or so she is constantly saying, "Mommy, I'm tired", and will want to lay down in bed. This is so concerning for us and we wonder if her pressure is really high or if it is just her medication making her feel this lousy. I guess next week's implant will tell us if she gets some relief.<br />
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Stephanie is looking forward to having Auntie Karen and some family over tomorrow for turkey dinner and a great visit! I will post again probably the day of surgery to keep everyone updated of her progress.<br />
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Have a pleasant weekend! The weather is supposed to be quite mild for us, yay!!<br />
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- DarDarlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-79312119188548041032013-02-02T14:32:00.000-06:002013-02-02T16:22:02.931-06:00Shunt Surgery NewsWell, as always, things aren't going to go quite as planned. Stephanie and I met with the neurosurgeon yesterday and we are planning to implant a shunt within the next couple of weeks. A special valve has to be ordered so we are hoping for around the 19th of February. <br />
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The unexpected part came when the surgeon said Stephanie can't have a brain shunt (ventriculoperitoneal shunt) because her ventricles are too small. That leaves us with gettting a <a href="http://en.wikipedia.org/wiki/Lumbar-peritoneal_shunt" target="_blank">lumboperitoneal shunt</a>. This goes into her spine on her lower back and the valve sits under the skin by her oblique muscles and the drain tube runs into her abdomen in the front. I am nervous enough about having something foreign implanted into my little girl, but it makes me even more uneasy knowing that this kind of shunt can cause another serious condition called <a href="http://en.wikipedia.org/wiki/Arnold%E2%80%93Chiari_malformation" target="_blank">Chiari Malformation</a> wherein the brain eventually malforms by getting "sucked in" a bit into the spinal column at the base of your brain/neck. It is a risk, a small one, but it happens to people and I had already read alot about it on one of the forums I frequent. These are real people dealing with this additional condition. Yikes! One day at a time Darlyn, one day at a time.<br />
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So the next couple of weeks will consist of a few more appointments - pre-op physical, anesthesia follow up etc.<br />
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As for some good news, Stephanie is really enjoying our new home! We moved a couple of weeks ago and it has been great for all of us to spend time on the same level. We moved from a two story house into a bungalow and it was a good decision! She is enjoying exploring the new space and my husband and I are able to include her in more daily activities since she used to spend most of her time in her room on the second floor. He even had her sweeping the kitchen yesterday! <br />
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Until next post - keep smiling!<br />
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<br />Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-28477846397777675372013-01-24T11:51:00.000-06:002013-01-24T11:51:47.355-06:00Unfortunate Turn of EventsAs I've mentioned in my last post, we have been preparing for Stephanie to have her second brain surgery coming up next week. After yesterday's lumbar puncture, this is not going to happen just yet.<br />
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Stephanie had a lumbar puncture (spinal tap) yesterday to determine if the fluid pressure in her brain (<a href="http://en.wikipedia.org/wiki/Idiopathic_intracranial_hypertension" target="_blank">intracranial hypertension or aka pseudotumor cerebri</a>) was reasonable enough for the surgeon to be comfortable with opening up her skull. It turns out her fluid pressure was 41! This may not mean anything to most of you reading but the number should be around 10-20. On July 10, 2010 she was admitted to hospital and her first lumbar puncture was a pressure of 76, one of the highest they have ever seen. This resulted in massive hemorrhaging of her optic discs, leaving her with damaged vision and excrutiating head pain. Throughout the last couple of years her pressure has mostly been in the 20 or 30 range...still too high but we continued to try to manage it with Diamox and Prednisone.<br />
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With yesterday's results, the decision has been made to surgically implant a <a href="http://www.nlm.nih.gov/medlineplus/ency/article/003019.htm" target="_blank">Ventriculoperitoneal Shunt</a> in order to drain the excess fluid. If left untreated, it would damage brain tissue and vision and leave her in tremendous pain on a daily basis. The symptoms are the same as if you had a brain tumor, but there is no tumor to treat or remove.<br />
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Anyway, we knew that one day she may have to have a shunt but we were expecting to deal with the seizures right now and complete her second brain surgery to help alleviate the number of seizures she has each day. A shunt is a lifetime ordeal - infections, revision surgeries, complications etc.<br />
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Now we are faced with placing the shunt first, getting her pressure to a reasonable level over time and then considering the second part of her brain surgery. Just another thing to add to her already very complicated little kid life.<br />
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The neurologist was expecting to speak to the neurosurgeon last night to determine when Stephanie can be scheduled for surgery. I am anxiously awaiting an email or phone call now to find out what happens next and when.<br />
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I will keep everyone posted of the events as they unfold.<br />
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Ugh!Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-43228472802645806062012-12-30T18:18:00.001-06:002012-12-30T18:18:27.064-06:00Preparing For Another SurgeryBelated Merry Christmas! I know it's been awhile since I last posted, and alot has happened since then. Upon our return from Disney World, my husband and I sold our house and bought a new one! Needless to say this was stressful and time consuming...but we are excited to make the big move to just outside our city limits. Stephanie will be getting a much bigger room finally and no stairs! Unfortunately, just after accepting an offer on our house, with a possession date of February 1, 2013, Stephanie's Neurologist confirmed that we would be moving ahead with her second brain surgery, Corpus Callsotomy. The kicker was that the date is set for January 29th!<br />
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Luckily we were able to find a great home and will move for January 19th, giving us a few days to get settled before the big surgery. The previous surgery was a big risk and we thought it would help Stephanie get some of the relief she needed from all her seizures. This was not the case and she continues to suffer from numerous daily seizures. Now we are faced with completing the separation of the two hemispheres of her brain. A recent MRI showed some tissue still connected in the anterior part of the brain and the 1/3 that was left intact in the posterior part of the brain. The surgeon will sever the remaining fibres of callosum and the two hemispheres of her brain will be completely separated. This in itself may cause some additional post physiotherapy issues between the two halves of her body and how she functions. There is risk of her losing her speech ability as well, which was our main reason for only severing 2/3 of the callosum during the first surgery. But now we feel that we have to try everything we can in order to help her get some relief and hopefully slow down any damage the seizures are causing. We've come this far, we have to keep going for her sake.<br />
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It is still the worst feeling in the world to have to make this decision to put my child in harms way in hopes of saving her in the future. Would all parents do this? No, I don't think so. Some would advocate further medications. Some would advocate the Ketogenic Diet, etc. etc. Stephanie isn't herself in this condition. She is so heavily medicated right now in preparation for her surgery that she can barely function without wanting to lay down and sleep. In preparation for this surgery, we again have to first determine if her intracrainial pressure is low enough for the surgeon to be comfortable opening her up. This means heavier doses of medication and a lumbar puncture the week before surgery to determine if she is indeed eligible...same procedure we followed this last year. The first time around in April, 2012 her pressure was too high and the surgery was cancelled. We pushed to try the medication trials again and sure enough her pressure was low enough to have the surgery in July. <br />
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Let's cross our fingers that Stephanie's body will cooperate and will be healthy enough for another brain surgery. She needs this. We need this.<br />
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Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-77535006801777976222012-11-22T13:28:00.003-06:002012-11-22T13:28:49.572-06:00What a WISH!Home sweet home! It's bittersweet to say that because Stephanie, my sister and I had such a wonderful time during our trip to Disney World that we would almost prefer to stay there! It's great to be back and be able to share the wonderful memories that we made. Give Kids the World Village was an amazing carefree place to be with your family. Breakfast, lunch, & dinner was served or delivered every day and tasted like home cooked meals made with love. The evenings were filled with events and activities such as Halloween on Mondays, Christmas on Thursdays, and bbq pool party on Saturdays! Stephanie received a gift delivered to our villa each and every day we were there.<br />
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As for the theme parks, we had such a blast and I couldn't have asked for Stephanie to be more cooperative and happy. We lugged her around everywhere and she loved it all! Let's see, we met and got pictures with Cinderella, Aurora, Rapunzel, Belle, Mickey, Minnie, Goofy, Pluto, Lion King's Rafiki, Woody and Jessie from Toy Story, Baloo, Dora, Diego, Boots, Patrick from SpongeBob, Green Goblin from Spiderman, Tinkerbell, her new sister, Curious George, Cruella DeVille, Woody Woodpecker, Chip and Dale chipmunks, sea lions, stingrays, dolphins, alligators, snakes and you name it!!!<br />
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There were a few teary moments...happy ones...for me and my sister. The look on Stephanie's face when she met some of the characters and how wonderfully they treated her made this whole trip priceless. I think along with meeting Cinderellla, Stephanie's most enjoyable moment was feeding and playing with the dolphins.<br />
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I don't think I will be able to come up with a thank you letter to Make-A-Wish and Give Kids The World that will adequately sum up how we feel about what they have done for Stephanie and our family. These memories will last a lifetime. I took hundreds of pics and some fantastic videos, some of which are posted in the Make-A-Wish page link on the right.<br />
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Now if only I can find a way to get Stephanie to understand that every time we get in the car we are NOT headed for Disney World!!!<br />
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Toodles!<br />
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Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-32222884536143387592012-11-12T09:54:00.000-06:002012-11-12T09:55:10.838-06:00Today is the day!!!We are busy packing last minute items and are extremely excited to depart on our Make-A-Wish adventure to meet Cinderella, Belle and Sleeping Beauty in Walt Disney World, Florida!
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<br>Stephanie woke up this morning and was more than pleasantly surprised to hear that today is the day!!!
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<br>Time for Stephanie, Karen and I to put on our Make-A-Wish tshirts and get this vacation started!
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<br>I will be sure to post pictures and updates soon...
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<br>Sent from my iPhoneDarlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-18268041736285030182012-10-18T20:40:00.001-05:002012-10-18T20:44:39.397-05:00Disney World Countdown!Time is going by quickly now and we are just over 3 weeks away from our Make-A-Wish trip to meet the Disney Princesses at Disney World. I am sure that Cinderella, Belle and Sleeping Beauty's Aurora are just as anxious as we are to meet! I finally submitted Stephanie's passport application and we should get her new passport by the end of this month. <br />
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To celebrate our upcoming trip, Stephanie had a great visit with Make-A-Wish staff last night and received many wonderful gifts! She was smiling ear to ear when she pulled out a new stuffed Miss Piggy doll! And that wasn't all...there were so many wonderful things that I took pictures and posted them along with comments on the page to the right under Make-A-Wish.<br />
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We are very excited for this wonderful opportunity and Stephanie's language has increased significantly now that she is talking about all things Disney!!<br />
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As Mickey Mouse would say, "Toodles!"...<br />
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Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com1tag:blogger.com,1999:blog-6739279384741885183.post-88168087851552637632012-10-08T12:21:00.000-05:002012-10-08T12:23:00.539-05:00More Surgery?It's been awhile since I've last updated on Stephanie and how she has been managing since her return home from the hospital at the end of August. She's recovered well and began the new school year with the rest of the students. Recently we met with the neurologist and the neurosurgeon to discuss the outcome of the surgery and Stephanie's seizure activity.<br />
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After discharge from hospital, her seizures were much shorter and she was only experiencing one or two a day. Sadly, I have to report that her drop seizures (atonic & tonic) have increased again to the numbers that she was experiencing before surgery. Stephanie is having upwards of 8-10 seizures most days. Some are much shorter than she used to have, some are just as long as before, but the main point is that if we weren't so diligent about hanging onto her transfer belt at all times, she would still be falling and injuring herself daily. There have been a few occasions in the last week or two that we didn't catch her and she literally crashes to the floor without warning.<br />
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After meeting with the neurologist and surgeon, it is most likely that Stephanie will need the second surgery to severe the remaining portion of the two halves of her brain. An MRI is scheduled for October 30th to determine how much was already seperated during the last surgery (should have been about 2/3rds). Sometimes the surgeon actually only seperates less or maybe even more. If he's already seperated as much as he could than we may have to move on to the Vagus Nerve Stimulator implant. But first things first. The MRI will tell us if there is more to be seperated. If so, the surgeon usually doesn't perform a second surgery until at least 6 months have passed to ensure that the surgery is necessary. This puts us at about January. In the meantime, we are increasing her seizure medicine, Keppra, to see if it will help with the seizures. So far nothing has changed.<br />
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As for our trip to Disney World, 5 weeks and counting! The Wish Granting Manager from Alberta will be in Winnipeg next week and will be dropping by to meet us. We are so very grateful for all they are doing and Stephanie is soo excited to be able to go to Disney World. We've been told she will be able to personally meet Cinderella, Belle and Sleeping Beauty as part of her special wish!Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-37224645493012291072012-08-26T18:27:00.000-05:002012-10-18T20:42:24.682-05:00News!! Make-A-Wish TripAfter some discussion last week with the Make-A-Wish Southern Alberta Chapter, my husband and I have decided to change Stephanie's wish from meeting Jewel to meeting the Disney Princesses at Disney World. Although she still enjoys listening to Jewel, we thought Disney World might be more memorable for her and easier to comprehend. <br />
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Well on Friday the flights were confirmed! November 12-19th my sister Karen and I will be taking Stephanie to Disney World!!! We will be staying at a wonderful resort that was built specifically to provide families and children of such wishes an enchanted place to stay - <a href="http://www.gktw.org/about/families.asp?m=about" target="_blank">Give Kids The World Village</a>. This resort in itself is 70 acres and has an incredible amount of activities to enjoy but we also will receive a 3 day pass to Disney World and it's different parks, a 2 day pass to Universal Studios and a 1 day pass to Sea World! Stephanie will get to meet some of the princesses during our visit to Disney World. She is beyond excited now and thinks that when we get in the car each day that we are going to Disney World.<br />
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In addition, the wish granting manager advised us that the Canadian National Board of Directors for Make-A-Wish will be personally adopting Stephanie's wish and will be making the donations to make her wish come true. They are very excited about this news since it is the first time the National Board has adopted a wish for their own! A profile of Stephanie will be presented to them, as well as details of the visit and a plaque to give appreciation of their generosity. <br />
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I think this will be an exciting journey for Stephanie and our family!!! Time to get her passport finalized...Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-30516884770674809242012-08-26T18:07:00.000-05:002012-08-26T18:19:22.869-05:00Home Sweet HomeAfter a long and drawn out stay at Children's Hospital, Stephanie and I finally came home last Saturday evening. 27 days in hospital was not what we were expecting when we were admitted on July 23rd for Stephanie's corpus callosotomy surgery. After getting sick a few days after surgery, with vomitting, fever spikes, not wanting to eat or drink and not wanting to sit up or walk, it was determined that she may have some form of infection...meaning meningitis. Because she was already on antibiotics when she was tested, doctors did not accept the negative test results and decided to treat Stephanie with a full course of antibiotics for bacterial meningitis. This meant another 3 weeks of two types of antibiotics.<br />
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I am happy to say that she is doing well at home this week! She is tired and does lay down alot but she is eating and drinking well. She's having some post antibiotic bowel issues but nothing we can't handle! We'll be meeting with the neurologist on September 19th to assess her recovery, her seizures and what the next course of action will be. If Stephanie continues to have seizures that involve both sides of her body, we may have to do another MRI to determine how much of the callosum was severed and if we need to have the second surgery to severe it completely. As always, time will tell...<br />
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Welcome home Stephanie!!!!<br />
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Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-16442660923244429232012-08-04T21:39:00.001-05:002012-08-26T18:19:22.867-05:00Getting better!<p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQRQ9QgB4bDBW1qzjJkB7OIfOfPSWeWWdXpGwCGq4OmhDhttx4E_sLHW5GlZsdPCec7wGs-qe1r9seUa-d6DsswZHe0s3sokLmzvMXY6CmxKRhe6FhDPxvmmUughwMTU5dzaifWBvi28Qa/s1600/photo-757741.JPG"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQRQ9QgB4bDBW1qzjJkB7OIfOfPSWeWWdXpGwCGq4OmhDhttx4E_sLHW5GlZsdPCec7wGs-qe1r9seUa-d6DsswZHe0s3sokLmzvMXY6CmxKRhe6FhDPxvmmUughwMTU5dzaifWBvi28Qa/s320/photo-757741.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5773013112584748018" /></a></p>Thought I would share a quick update. Stephanie is doing considerably better yesterday and today! She is eating a bit more and drinking a little...she's even been up and walking a few laps around the ward.
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<br>Thank goodness we were here when infection was suspected and not home recovering. Antibiotics seem to be kicking butt!Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-16045204013732096382012-08-02T17:57:00.001-05:002012-08-26T18:19:22.865-05:00Not as planned...Sorry for the delay in posting! I have been keeping some family and friends updated but wasn't in the mind set to officially "think" about what I wanted to write about. So Stephanie's surgery itself went fairly well and she was eating and drinking on the Monday and Tuesday after. However, by Wednesday she was spiking<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875);"> fevers and throwing up. She was already started on antibiotics after the surgery thank goodness! By Friday she was having trouble sitting up from what seemed like pain in her head. She would grimace and squint her eyes and grab her head.</span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">The weekend proved much of the same...fevers up and down, not eating or drinking, didn't want to sit up or walk. The team decided to do some blood cultures to determine if there was an infection. We were told this Monday that the cultures were not accurate due to there already being antibiotics in the blood which hampered the bacteria from growing giving a possible false negative result for infection. Because of this and all her symptoms the doctors did still suspect meningitis and Stephanie will now be staying in hospital until at least August 11.</span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">She had a PICC line inserted today which is a central line to just above her heart to administer the antibiotics directly. Apparently the drugs are very harsh on your veins. Even if this isn't meningitis, there certainly is/was some kind of process going on within Stephanie to make her ill...and I don't think it was just because she had surgery. It has now been 10 days post operation, her wound is mostly healed and she is only today finally starting to eat a little and sit up and walk without too much complaint!</span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">As for seizure activity, I am happy to say that she definitely has less severe seizures now! They used to last a minute or two but now last anywhere from a couple seconds to 20 seconds or so. The big concern is when she is standing or walking will the seizures still cause her to drop. There is some evidence that she will still fall, since some of her seizures include tonic in both arms which means the seizure activity crossed over (generalized) to the other side of her brain. She is also having some new seizures that the neurologist actually said was a good thing. She is experiencing seizures where her head turns severely to the left and her eyes turn up and to the left as well. This means that the seizure activity is localized in one area and is starting on the right side of the brain. In future they may be able to do a grid placement on her brain to determine the exact location of where the seizures are originating from and possibly remove that part of the brain. For now though, let's hope that the corpus callosotomy was successful enough to save her from the drop seizures. If not, we may have to consider doing a complete callosotomy in the future (the surgeon only dissected 2/3 of the callosum).</span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">I will be posting some pictures of Stephanie's experience tonight on a separate page on the sidebar. Also, Christa from Make-A-Wish dropped in last Friday for a nice visit and brought Stephanie a Jewel cd to enjoy during her recovery! Thanks Christa! (pic posted in Make-A-Wish gallery).</span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span><br />
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">Long post, sorry! Pray that Steph does well the next week so we can go home!</span><br />
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<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span>Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-1749872738287389582012-07-23T15:06:00.000-05:002012-08-26T18:18:23.233-05:00In PICU<p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKajdtlwsmV64C0DGcbZ4FO1ld6QWgzaNqojI_F2FC5j8DdYAniIqAwO6CBhAfe7tBn23KAgqi7-nwgjKpzl2nmHqJda1wgOqLcyGHiIHwkogQHX2rDsCyTUTAj2WD58b1eghmTtY7z9Xc/s1600/photo-728143.JPG"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKajdtlwsmV64C0DGcbZ4FO1ld6QWgzaNqojI_F2FC5j8DdYAniIqAwO6CBhAfe7tBn23KAgqi7-nwgjKpzl2nmHqJda1wgOqLcyGHiIHwkogQHX2rDsCyTUTAj2WD58b1eghmTtY7z9Xc/s320/photo-728143.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5768459033038232546" /></a></p>Stephanie is recovering quietly in PICU from her corpus callosotomy surgery. What a great feeling to finally be at her side. Technically I am writing this from my room in the Ronald McDonald Family Area.
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<br>I will not be allowed to have my cell phone on in PICU but I will go into the waiting room once in awhile to make calls and check messages.
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<br>It's difficult to see Steph with drains, machines, and wounds but I am thrilled that she asked for water right away! Thank goodness her speech is still intact!
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<br>Here's a quick look at what we first saw when we came in the room. She will have swelling as the days go on but right now she looks great.
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<br>Sent from my iPhoneDarlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-43927866242844617212012-07-23T06:29:00.001-05:002012-08-26T18:18:23.235-05:00Here we go...With about an hour's worth of sleep we are off to the hospital...if I can ever possibly wake up Steph out of bed!
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<br>I will keep in touch throughout the day.
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<br>Sent from my iPhoneDarlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-6764768984479441212012-07-20T01:35:00.001-05:002012-07-20T20:53:06.582-05:00Surgery on MondayWe just can't believe it. Stephanie's lumbar puncture on Wednesday had an opening pressure of 17.2! Not only was that just about the lowest we had seen since she first got sick 2 years ago, it also meant that she was now eligible for the Corpus Callosotomy brain surgery. My husband and I both cried in the procedure room out of pure relief and a sense of hope. <br />
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It quickly set in though that we were now faced with dealing with the reality of what happens next. I am sure we both thought, "Be careful what you wish for, it just may come true". It's a very strange feeling to somehow be elated at the prospect of Stephanie being able to have this brain surgery when only 5 months ago the thought of her undergoing such a procedure was almost excruciating. <br />
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Well, she's scheduled for surgery Monday, July 23, 2012. Not much time for a parent to process all the questions, concerns, and emotions that are keeping me awake at this very moment. I will be able to post updates to this blog via my iPhone and let everyone know how she does during surgery and the recovery process. Stephanie will be going into PICU (Pediatric Intensive Care Unit) immediately after surgery and may stay there for a day or two before being moved to a regular ward for the rest of the week. <br />
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Big, big hugs to our friends and family for their love, support and prayers as we take this very huge step to hopefully provide some palliative care for our baby girl!Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-5733498359191602692012-06-25T22:18:00.002-05:002012-10-18T20:42:52.264-05:00Make-A-Wish Visit!We had a great visit from the Make-A-Wish volunteers Christa and Cody this evening. The process of granting a wish can sometimes take up to a year, so it was especially nice to get a quick visit from our new found friends who came bearing a gift! Stephanie is now the proud owner of a new Jewel t-shirt! Thanks Christa and Cody for taking the time out of your busy lives to put a little smile on Stephanie's face. We anxiously await news of being able to meet Jewel in person...to be continued!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw4QShBAu00A1QfJjZhrp12BOjpn_JjPfwGSJCS9zcBZleQIBvllOrybht38wDoQH5XUV5jyHBqOfDOdVmmVQXhOVcxTiTQxHXm_f8X7kyJbdFMQ7enc2kcPf2g74zlw0wr4WTzJaPgk9i/s1600/IMG_2285.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" rca="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw4QShBAu00A1QfJjZhrp12BOjpn_JjPfwGSJCS9zcBZleQIBvllOrybht38wDoQH5XUV5jyHBqOfDOdVmmVQXhOVcxTiTQxHXm_f8X7kyJbdFMQ7enc2kcPf2g74zlw0wr4WTzJaPgk9i/s400/IMG_2285.JPG" width="400" /></a></div>Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com0tag:blogger.com,1999:blog-6739279384741885183.post-20027410301642716082012-06-11T14:44:00.000-05:002012-06-23T19:10:24.831-05:00Surgery PlanSo we have a plan (or plans) in place. Either way Stephanie will be having surgery at the end of July. <br />
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Once again we are going to try to get Stephanie's intracranial pressure down by significantly increasing her Diamox medication and putting her on a second round of steroids until July 18th. On that day, the neurologist will do another lumbar puncture to check her opening pressure. If the pressure is reasonable (the surgeon wants it to be under 20 cm H2O), Stephanie will undergo the Corpus Callosotomy that we are hoping for. If her pressure is still too high, she will be receiving a VP Shunt, which should hopefully decrease her pressure over time so that she may be eligible for the corpus callosotomy in the future.<br />
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Only time will tell how this plays out but for now at least we can expect some type of surgery by the end of July. One step closer to getting some much needed relief for Stephanie, both from her seizures and her increased pressure.<br />
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Wish her luck!!!Darlynhttp://www.blogger.com/profile/05999491645837216983noreply@blogger.com3