tag:blogger.com,1999:blog-293671372024-03-13T09:16:03.359-05:00Our Sweet SophieOn May 10, 2006, at only 6 months old, Sophie was diagnosed with Infantile Spasms...a RARE and CATASTROPHIC form of epilepsy. She continues to battle this disorder on a daily basis. Only after she had the majority of her left hemisphere of her brain removed (on May 29, 2009) has she had a relief in seizures (though she continues to show spiking in her EEG). She has shown much improvement in development since the surgery.Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.comBlogger392125tag:blogger.com,1999:blog-29367137.post-89513438852474408462023-04-20T09:13:00.000-05:002023-04-20T09:13:34.160-05:00Breaking Point<p><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px;">The tears that pool in her beautiful, innocent eyes that silently stream down her face - those are the most heartbreaking. She is so brave, so strong, so resilient. But she has met her breaking point and it pains her beyond words. It’s midnight and we’re on our first night of an extended EEG stay. The strong gagging scent of the EEG glue, the uncomfortableness of the IV in the crook of her arm, the seizure she just had while going to the bathroom - it was just all too much for her. Epilepsy has stole so much from her. These are the things that make me so uncomfortable to talk about publicly. But it’s the truth of epilepsy. Epilepsy has robbed her of her independence, dignity at times and so much more. I tell her to let go, to let the tears fall freely. That a good cry is good for her. I whisper to her that she’s stronger than I can ever imagine and that it’s okay. That today has been a lot. More than she should have to endure and I’m so sorry that she has to go through this.</span><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px;"> </span></p>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com0tag:blogger.com,1999:blog-29367137.post-71309529160877090612013-12-09T10:14:00.000-06:002013-12-09T12:27:51.193-06:00Against All Odds<div style="text-align: justify;">
I have the most ridiculous smile on my face. My world seems a bit lighter. I can now let go of the anticipation of this day, as it is now here. A day that did not seem possible. Today marks 2 years since Sophie's second round of brain surgeries. Two years. It's hard to believe. </div>
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On May 10, 2006, our world as we knew it was changed forever. That day was a little over seven and a half years ago and I still get a rush of emotions when I think about it. It takes my breath away and makes my heart beat a little bit faster. I can feel the anxiety rising. When I close my eyes, I can vividly picture that day. I remember the exact spot in the office where I was standing...where I soon crumbled. I remember the stream of tears that I could not seem to stop from continuously flowing down my face. I remember driving straight to the hospital. I remember waiting at admissions to be checked in. I remember a staff person coming to get us to walk us to our room. I remember looking at Sophie and feeling so helpless. That day will forever be etched in my memory. The pain of that day will always be with me. </div>
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But to fully appreciate today, <i>that</i> day and so many other pivotal moments along this journey that lead us to today must be remembered. </div>
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After <i>that</i> day, I spent an obscene amount of hours on the internet to research all I could about Infantile Spasms. For days on end, every single night after Sophie went to bed, I sat down in front of my computer to research. I struggled to find any good news and often ended up in tears. The words uttered by our neurologist just moments after we were given the devastating diagnose seemed to hold true. We were told that she had a 70% chance of being mentally retarded and we were to start her on a drug that had a side effect of death. I am not sure if all this information was necessary at that exact moment but I guess one might believe to just pile it all on at once. </div>
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That drug that we were to put all our hope into is called Acthar gel (a natural product derived from a bovine or porcine source of the adrenocorticotropic hormone or ACTH). While we were in the hospital, we were taught how to inject this drug into our daughter's muscle in her upper thigh. In other words, I held her down while Brandon injected an obnoxious size needle into her leg every single day for a little over two months. Soon her thighs looked like they were sprinkled with freckles from all the little scars from the injection sites.</div>
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ACTH was a failure as it did not stop her seizures. Though they did reduce the number and severity of the seizures while she was on the drug, the seizures slowly crept back up and only got worse from there. We were given options of other drugs but were told the possibility of any other drug stopping the seizures was low. But we tried anyway...Topamax, Vigabatrin, Zonegran, Depakote, Clonazepam, Clobazam, Ketogenic Diet, Keppra, Depakote (again), IVIG, ACTH (again), Banzel and Felbatol...all over the course of three years.</div>
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As Sophie's numerous EEGs never showed a focal point in which the seizures were originating nor did her initial MRI show any abnormalities, we were never given any other options but to give her these medications that were failing her.</div>
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In the meantime, I met an amazing mom online through an Infantile Spasms support group who has a son a few years older than Sophie. It was because of her that I found out that I should pursue brain surgery as an option for stopping the seizures. At the time, it sounded barbaric to me. I mean how could you possibly remove large portions of the brain...entire lobes, maybe even the entire hemisphere. How could a person, a child...my child...survive that?! Your brain, in essence, is who you are. Once it is removed, there is no going back.</div>
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I soon learned through her that a chaotic EEG showing generalized seizures and a normal MRI did not automatically rule out brain surgery. That even though Sophie's MRI (which shows the structure of the brain) was normal, that she needed a PET scan (which shows the function of the brain). She also told me about Dr. Harry Chugani, a pediatric neurologist known all over the world for specializing in Infantile Spasms and brain surgery.</div>
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When Sophie was 11 months old, we traveled to Detroit for our first visit to the Children's Hospital of Michigan for a PET scan, 24 hour video EEG and an appointment with Dr. Chugani. In order to be a candidate for resective brain surgery for epilepsy, only one side of the brain must be affected. Unfortunately, Sophie's initial PET scan showed not only a large area of hypometabolism in the left hemisphere but also a small area of hypometabolism in the right hemisphere. Even though Sophie was not a surgical candidate at this time, we kept in touch with Dr. Chugani via e-mail. He is an amazing doctor like that...as busy as he is, he always finds time to quickly (usually within 24 hours) respond to e-mails from parents all over the world even if your child is not a patient of his. </div>
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As our list of failed medications grew, we decided to make another trip to Detroit when Sophie was one month shy of her 3rd birthday. This time, the PET scan only showed hypometabolism in the left hemisphere and the right hemisphere appeared normal. In other words, we had one foot in the door for Sophie to become a surgical candidate. Though more testing needed to be done, so we returned to Detroit the following month. With our hopes up high, it was devastating to find out that the test results were not conclusive enough for Sophie to become a surgical candidate at this time. We were left with instructions to repeat the EEG in six months to find out whether a focus would appear. I was too exhausted to travel to Detroit again, so we did the overnight EEG at our local hospital six months later. I got a copy of the EEG on a disc to send to Dr. Chugani before we even left the hospital. The disappointment of finding out that Sophie was not a surgical candidate last time weighed so heavily on me, that I waited almost three weeks to mail the CD.</div>
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Then a few days after mailing the CD, I received a call saying they were going to present Sophie's case to the surgical committee. I was in complete shock. Unbelievable. I could not believe this day was here.</div>
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On May 29, 2009, at the age of 3.5 years old, Sophie had a left subtotal hemispherectomy. A surgery that removed her left parietal, occipital, temporal and frontal (except the motor/sensory cortex) lobes. She went from having hundreds of seizures a day to none! She went from being virtually nonverbal to talking up a storm! All those therapy sessions where we saw very little developmental gains were finally paying off. Our child's brain now had the ability to make new connections and her cognitive development was nothing short of amazing to watch. </div>
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Somewhere around ten months after surgery, Sophie's seizures relapsed. I knew it had but I was in denial. I did not want to believe it. I think it took me about a month to come to terms with it. I was exhausted and lost. Elsa just turned 2 years old and Charlie was about 8 months old. We tried adjusting medications which would temporarily work but the seizures were relentless. We even tried another round of ACTH. We had to pull Sophie from preschool since her immune system was suppressed from the ACTH. I don't know if it was from the exhaustion of having three kids or the depression of the relapse in seizures, but this time in my life was a blur.</div>
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After we exhausted another long list of medications, we decided to pursue brain surgery again. Though this time it was easier to convince them to go in. The biggest challenge we faced this surgery was that there was not much tissue remaining in the left hemisphere. We had a high possibility that they would want to remove the left motor/sensory cortex which would have left her with a physical deficit on top of all the cognitive challenges she was already facing. In the end, it turned out all the seizures were originating from a 1cm by 1in piece of cushion that was surrounding the motor/sensory cortex. They removed that piece of tissue and did extensive Multiple Subpial Transection (MST) over the remaining tissue.</div>
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Which...finally...brings us to today. Two years since that last surgery. TWO YEARS OF BEING SEIZURE FREE!!! Sophie's latest EEG was about 9 months ago which showed NO SPIKING and NO SHARP WAVES. This was the first ever EEG she has had that did not show any epileptic or pre-epileptic activity.</div>
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By the way, we moved to a Chicago suburb a little over a year ago (for Brandon's job). Sophie is now in 2nd grade and is doing amazing. She splits her time between the general education classroom and instructional classroom. She receives OT, PT, ST along with instructional minutes at school. She also has private OT, ABA, vision therapy and music therapy.</div>
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She is considered an emerging reader. She recognizes all the letters in the alphabet, knows the sounds they make and has memorized a long list of sight words, though she struggles with decoding (sounding out words). She still loves pretend play and likes to act things out with her Disney figurines. Her fine motor skills are getting stronger. She is able to draw stick figure people and write her first name.</div>
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Her biggest obstacle in learning is her ADHD. We have tried a few medications (Tenex and Strattera). We just started back up on Therapeutic Listening. We have thought about trying Tenex again or possibly Focalin (she has another doctor's appointment on Tuesday to discuss these options).</div>
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And though sometimes I felt lost and that I had lost hope, there was always a small part of me that kept fighting on behalf of Sophie through all of this. Sometimes I had no idea what I was fighting for, but I knew I had to keep moving forward for her. For her perseverance in life has taught me so much. Her smiles through it all has held me together. I still take each day as it comes as I know all too well that the possibility for relapsing is there (especially when hormones start changing). So I will enjoy today...the first time in her 8 years of life to be able to say she has reached the two year anniversary of being seizure-free. It only took us two rounds of brain surgeries to get here! </div>
<br><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-K9Ay1l3GWAA/UqYEtZoO6BI/AAAAAAAABZo/c4IdrgqOyQw/s640/blogger-image--1760554906.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-K9Ay1l3GWAA/UqYEtZoO6BI/AAAAAAAABZo/c4IdrgqOyQw/s640/blogger-image--1760554906.jpg"></a></div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com3tag:blogger.com,1999:blog-29367137.post-15996974194101961942012-03-12T10:43:00.001-05:002012-03-12T10:43:18.925-05:00A whole new ballgame...<div class="separator" style="clear: both; text-align: center;">
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Sophie has been through a LONG list of anti-seizure medications. I can name off a dozen without even blinking an eye. Somehow, I have gained comfort in the knowledge that I have built up over the years when it comes to anti-seizure medications. But now that she is seizure-free, I am changing my focus to ADHD medications.</div>
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<tr><td class="tr-caption" style="text-align: center;"><i>I meant to do a whole post on Friday, March 9th...her 3 month seizure-free anniversary. I can't believe it...3 months already!!! Absolutely amazing. So this is what her hair looks 3 months post-op. By the way, I love when people ask if she got a hold of some scissors so that I can drop the "No she had brain surgery" bombshell. For me, it's all about raising awareness. And I hope I put people at ease by talking so candidly about it.</i></td></tr>
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She is 6 years old and in kindergarten, in other words, it is important for her to have the ability to focus on tasks that are demanding of her. But learning about a whole new set of drugs is exhausting. There are stimulants, non-stimulants, long lasting, short lasting, side effects and the list goes on. And, really, I don't want to have to start trialing a whole list of drugs. I have to trick her into taking these drugs and then she doesn't have the ability to tell me how they make her feel. I hate that. It makes me sad to see what the side effects of these drugs do to her. I want a magic wand to wave and have "the" drug poof from thin air. You know, "the" one that will help her focus without having horrible side effects.</div>
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<tr><td class="tr-caption" style="text-align: center;"><i>Grandma Debbie bought this for Elsa for her birthday a few months ago...it was the only one that was big enough for Sophie to still fit it. And she loves it, though she is a crazy driver. For the cost of these power wheels, you would think they would come with a remote control.</i>
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So we started her on Strattera. We started with 10mg in the morning but it was making her tired so we switched to the evening. Within an hour of taking it, she is conked out. No late nights for her but she was always great about going to bed anyway. This past Friday night, we increased it to 18mg. I can't say that I have seen any improvements yet. It has made her more sensitive, as in, the tears come streaming if she gets her feelings hurt over any little thing.</div>
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<tr><td class="tr-caption" style="text-align: center;"><i>Happy belated Valentine's Day.</i></td></tr>
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But, for the most part, she is happy. She is full of imagination these days. She has always been great at pretend play but she has taken it to a whole other level. The other day, I heard her in the other room playing with her hand puppets when I heard her talking in this deep voice. That was the first time I heard her change the sound of her voice while playing with puppets. Melted my heart.</div>
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<tr><td class="tr-caption" style="text-align: center;"><i>She was going to a friend's birthday party where you were suppose to wear flip-flops. She wasn't so sure about that. They lasted all but a few seconds on her feet. But she had a blast at the birthday party. Her friends in kindergarten are so great about looking out for her. They love her to pieces and truly care about her. In some ways, I don't want her to get any older. I wish I could freeze her at this age.</i></td></tr>
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We are working on pre-reading skills. She recognizes all her upper and lower case letters. She also knows the sounds of most of the letters. Fine motor skills are still very difficult for her. But luckily (for her...I know how important it is for others), handwriting skills are not as important as they use to be. We will continue to work on pre-handwriting skills (circle, squares, etc), but when the time is right we will introduce an adaptive keyboard. Her expressive communication is still one of her strongest areas. According to the chart below (thanks to <a href="http://development%20child%20language%20development%20overview/">Danielle</a> for the posting this), I would say that she is solidly in the 4-5 year age range and would be in the 5-6 year age range if her speech was more fluent on a consistent basis. Because you should hear the sentences and words that flow freely and naturally when she is playing with her Wizard of Oz hand puppets.</div>
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<tr><td class="tr-caption" style="text-align: center;">Thanks to <a href="http://www.weetalksls.com/development/">Wee Talk Speech & Language Services, LLC</a> for the above chart.</td></tr>
</tbody></table>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com11tag:blogger.com,1999:blog-29367137.post-13513527102393066732012-01-27T07:00:00.000-06:002012-01-27T07:00:00.848-06:00She is doing GREAT!!!<div class="separator" style="clear: both; text-align: center;">
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Oh goodness, I am horrible. Sorry for the lack of updates. Life has been...well...crazy but in a good sort of way. I mean, I am a stay-at-home mom of three kids. One that is recovering extremely well from brain surgery. Another that is a keep-me-on-my-toes-sensory-seeking two year old. And a just turned four year old that is a highly demanding momma's girl. Between that and me having a hard time letting Sophie out of my sight, I have been physically and mentally exhausted. It's hard for me to even think beyond what is right in front of me. </div>
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But all of that has changed this week. At the end of the day today, it will mark Sophie's first full week back at school. Her energy level is there and so is my comfort level. I know I have said this before but she is just AMAZING. She really is. I am just in awe of her. She is one determined little (umm big...but it's hard for me to accept that she is getting so big) girl.</div>
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<span style="text-align: left;">She remains seizure-free. There isn't a day (or night) that goes by that I am not incredibly grateful for that. A huge weight has been lifted from me. It's hard to even think about my emotional state of mind prior to surgery. Or, actually, prior to finding out that she was a surgical candidate (because the few weeks prior to surgery is a whole other story). I will never be able to find the words to express the heartbreak of having to hold my child every single night while she had a cluster of seizures. It was like clockwork. Usually around midnight and then again around 4am.</span></div>
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My heart still pounds a little faster when I hear her moving around in the middle of the night. Usually, she is just fishing for my hair. Once she finds it, she will fall right back to sleep. Yep...she sleeps with me. But I feel my comfort level growing there too. I think she is ready to sleep in her own bed again. She was a great sleeper until she was 18 months old. That was when the drop seizures started and she would wake up in the middle of the night with bloody lips (even with all the padding I put on her crib). So she started sleeping right smack dab in the middle of Brandon and me. And she stayed there until she was seizure-free after her first surgery (when she was 3.5 years old). Then back to her own bed she went until her seizures relapsed eleven months post-op.</div>
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But this time is different. It just has to be. I am once again filled with so much hope. Seizure-freedom seems so real. So permanent. Why not? Right? Miracles do happen.</div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com9tag:blogger.com,1999:blog-29367137.post-42360516548197387292011-12-17T23:10:00.000-06:002011-12-17T23:10:46.584-06:00Home Sweet Home<div style="text-align: justify;">
We are home. We actually got home late Thursday night. Sorry for the lack of timely updates. Sophie is doing well. She is getting stronger by the day.</div>
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Everything has caught up to me and I am just completely exhausted. I am trying to get back into the routine. And with the holidays right around the corner, I have a lot on my To Do list. But I am just soaking in these days...being back at home with my family. I missed Elsa and Charlie a lot. And it feels good to be cuddled up next to Sophie in my own bed (did I mention that I slept 7 straight nights in a hospital bed with Sophie!).</div>
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<b><span style="font-size: large;">Happy Holidays!</span></b></div>
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She is doing <b><i>Ah-May-Zing</i></b>!!! What a difference a couple of days have made.</div>
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Here's a picture just a few hours after surgery on Friday...</div>
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Then she slept for the next 3 days...</div>
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Physical Therapy and Occupational Therapy came this morning. She was MAD. I had to leave because she kept crying for me. So, of course, I went down to the gift shop to buy her a prize...cute little slipper socks. But, by the time I came back up, she was already in bed looking great. She said "Mommy, I did good". She was so proud of herself. They had her (with support) walk down the halls of the hospital. She is still weak but I know it will only be a matter of time before she gains her strength back.</div>
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Looking so awake and alert after therapy...</div>
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Do you see that piece of graham cracker she is holding? She is eating and drinking, though we are taking it VERY slowly. She gets a few sips of water an hour and has ate a little over half a graham cracker square.</div>
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After therapy, these clowns came by...</div>
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She is holding a <i>magic</i> wand in her <b>RIGHT </b>hand and popping bubbles. What a great therapy idea!</div>
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<b><span class="Apple-style-span" style="font-size: large;">I am hopeful that we will be home by the end of the week!!!</span></b></div>
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Thank you all for your love, support and prayers. It really has lifted me in spirit. You all have been on this journey with us and have been an important part of the healing process. Thank you from the bottom of my heart.</div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com7tag:blogger.com,1999:blog-29367137.post-52603126673904306492011-12-11T20:50:00.001-06:002011-12-11T20:50:52.955-06:00One day at a time...The most important thing... Sophie is seizure-free!!!
I lost focus of that a few times in the last couple of days. She surprised us coming out of surgery on Friday. She was so awake and alert and thirsty. We tried to take things slowly to make sure she did not get sick. And she did not. She was a little swollen which was to be expected. She was doing amazingly well, all things considered. So I got my hopes up high that she was going to recover quickly this time around. She was already sitting up on her own, talking and drinking. I felt like we were already coasting. She showed a slight weakness on the right side of her body but I know she will regain most (if not all) of it with therapy so I was not all that concerned. She also did not seem to be in any pain. Things were beyond all expectations.
But Saturday and Sunday were different. She has been sleeping almost nonstop. Though she was awake but not interactive for a period of time this afternoon. She refuses to take a sip of anything and continues to vomit or dry heave almost every time she sits up. But those things are minor and she will come around.
I just need to be patient and focus on the big picture.Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com4tag:blogger.com,1999:blog-29367137.post-66955778137149360262011-12-09T12:38:00.000-06:002011-12-09T12:38:49.126-06:00Surgery is over!!!<div style="text-align: justify;">
Dr. Asano and then Dr. Sood came in and talked to us. They both said all went well. They removed the cushion that they planned on and then performed the MST over the entire sensi-motor cortex. When they replaced the grids, they did not see any spiking. Therefore, they did not feel it was necessary to remove any additional tissue which will give her a better chance at preserving the motor function in her right hand. This is GREAT news so far!!! Now it is a "wait and see" game to see how much weakness she has and how much therapy she needs. Just like we wanted Sophie to have lots of seizures to be captured during the grid monitoring, we are also wanting to see weakness immediately after surgery. But we are hoping it will only be temporary and she should regain her strength within two weeks.</div>
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<b><span class="Apple-style-span" style="font-size: large;">Thank you for all your prayers, support and love.</span></b></div>
<br />Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com6tag:blogger.com,1999:blog-29367137.post-52829339848432886552011-12-09T11:15:00.000-06:002011-12-09T11:37:36.068-06:00Game Plan<div style="text-align: justify;">
This is hard. So hard. Because I know she is going to come out with some weakness. I just don't know how much yet. And I do not know how much of it will be permanent. They said to expect her to get frustrated and that she will need the support of her family to get through it. Those are difficult words to hear.</div>
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Plans are different than what we thought they would be before we started this whole process again. Initially, we thought she would <i>just</i> need Multiple Subpial Transection (MST). But the intracranial subdural grids showed a focus. And for a lack of better terms, you can say she has focal hypsarrhythmia in the cushion surrounding the lower bottom half of the motor cortex. So, Dr. Sood is going to resect the cushion on the entire left side of the motor cortex. Then, perform the MST on the entire sensi-motor cortex. They will once again put the subdural grids back on and monitor the brain wave activity. If they are still seeing spiking in the lower half of the motor cortex (which controls the facial muscles), they will then resect that tissue. And then close her up and hope to God that she never has a seizure again.</div>
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<tr><td class="tr-caption" style="text-align: center;">A7 and A8 represents the cushion surrounding the lower bottom half of the motor cortex. </td></tr>
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Speaking of seizures, she has not had a visible one since 11:55am yesterday. Just 3 hours prior to that, they had started her on Fosphenytoin (IV form of Dilantin). Very interesting but that doesn't change the surgery. The focal hypsarrhythmia and spiking still showed on the EEG.</div>
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During her left subtotal hemispherectomy (that she had 2.5 years ago), Dr. Sood removed all the tissue in her left hemisphere except the sensi-motor cortex plus one centimeter of tissue (cushion) that surrounds it.</div>
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Okay, let me try to explain this in simple terms because I know when I tried to explain it to my family last night, it became confusing to them.</div>
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Think of Sophie's sensi-motor cortex as a slice of white bread. Now draw a vertical line down the middle of the piece of bread. The left side of the bread is the motor cortex. The right side of the bread is the sensory cortex. The vertical line is a major artery. The crust that surrounds the slice of bread, that is the cushion. Between the cushion and sensi-motor cortex are small arteries that supply blood to both areas. The closer you get to the sensi-motor cortex, the higher the risk of impairment. Thus, the reason for the cushion.</div>
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Now think of taking a scalpel and separating the crust from the white part of the bread without actually removing any of the white part and avoiding all the arteries. Not easy. Now turn the crust of the bread into a squiggly line. Even more difficult. Dr. Sood will be performing this surgery microscopically. </div>
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The part of the cushion they are removing is attached to the motor cortex that controls her right hand and right side of the face. Therefore, there will most likely be weakness in this area. But not total loss of control. She will probably lose 20% of the function of her right hand. But she should regain all of her facial muscles because the head is bilaterally controlled by the brain.</div>
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I believe this change in plan is good. I *think* it gives her a higher chance of seizure freedom. Even though it does give her a higher risk of motor impairment, the higher chance of seizure freedom outweighs that risk.</div>
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Does this all make sense? If not, ask away.</div>
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By the way, the first incision was made at 10:40am.</div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com3tag:blogger.com,1999:blog-29367137.post-26074061815712837632011-12-07T22:34:00.000-06:002011-12-07T22:35:05.626-06:00So far, so good.<div style="text-align: justify;">
Sorry for the lack of updates on my blog. Part 1 of the surgery went well. Grids are placed and she is being monitored. She has woke up a few times and seems to be doing well. Very thirsty but no pain.</div>
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She lost a lot of blood and looks really pale. They gave her some blood while in the OR and they are about to give her some more. </div>
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She had a big cluster of seizures around 10:20pm, so they will have plenty of data to review tomorrow.</div>
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Brandon is taking the night shift and I am getting ready to head back to the hotel.</div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com5tag:blogger.com,1999:blog-29367137.post-55573076062542973412011-12-07T10:31:00.000-06:002011-12-07T10:34:27.072-06:00Day 1 (Take 2)<div style="text-align: justify;">
Her eyes widen as I carried her into the operating room. The lights were bright. Everything was white except for the few things that were draped in the sterile blue cloths. Everyone was wearing surgical gowns and masks on their face. </div>
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It was much harder this time around. To kiss her goodbye. She is much more aware. I could feel the sense of panic in her. As I set her on the operating table, she did not want to lay down but she did. Then came the bubble gum scented mask that would put her to sleep. She fought it hard. Tears started pooling up in her eyes. It broke my heart. I sang her <i>We're Off To See The Wizard</i> as she drifted to sleep. I was hoping she would dream about it while she was under. It is her all time favorite movie. She has watched it so many times that she has most of the movie memorized. Her Grandma Debbie bought her Wizard of Oz puppets and a pop-up book that she treasures. She loves to act out the movie with those puppets almost on a daily basis.</div>
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I kissed her goodbye around 9:15am (Eastern time) and surgery started at 10:21am.</div>
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Here are pictures from this morning...</div>
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<tr><td class="tr-caption" style="text-align: center;">Hospital Owl and Hootie along with her own owl shirt.<br />Can you tell we have a theme going on here!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Reading the Wizard of Oz pop-up book with Daddy.</td></tr>
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Thank you all for your love, support, thoughts and prayers. It means the world to us. It warms my heart and soul to know that so many people care.</div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com4tag:blogger.com,1999:blog-29367137.post-38485272031149952922011-12-05T08:00:00.000-06:002011-12-05T08:00:00.563-06:00My beautiful babies...<div class="separator" style="clear: both; text-align: center;">
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I know, I know...they are not babies anymore. But they are mine and I love them so much. They are perfect...each in their own unique way. I am going to miss each and every one of them this week. It breaks my heart just thinking about it. Even though Sophie will never physically be very far away from me, she will just as well be a million miles away when she is in surgery. I love her so much. I know I am making the right decision, even when I doubt myself. She is going to be in trusting hands that will be guided by Him. I know she is going to be alright but it doesn't make it any easier.</div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com5tag:blogger.com,1999:blog-29367137.post-90012443277918463262011-12-04T14:57:00.000-06:002011-12-04T14:57:09.499-06:00Packing sucks!<div style="text-align: justify;">
We leave tomorrow morning for our trip to Detroit. I am trying to stay strong...for Sophie. And a piece of me is already starting to miss Elsa and Charlie. I hate this. I hate it so much. But the possibilities that this trip may bring...it is worth every moment.</div>
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So my current thought...</div>
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<b><span class="Apple-style-span" style="font-size: x-large;">What do I tell her?</span></b></div>
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We have told her we are going on a trip to see Dr. Chugani. She knows who he is and she is kind of excited to stay in a hotel. But we haven't told her anything beyond that. Last time around, I didn't worry about this. She wouldn't have understood anyway. But this time? This time is a whole different ballgame. She is so smart. </div>
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I mean I have to tell her something. Can you imagine waking up from brain surgery and not knowing what the heck just happened?!?! So I have to prepare her somehow. I just don't know how.</div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com5tag:blogger.com,1999:blog-29367137.post-72525996717555171422011-11-21T08:00:00.000-06:002011-11-21T10:45:33.408-06:00Take Two<div style="text-align: justify;">
Starting the blog post is sometimes the hardest. I wait so long between postings that I have way too much to say and don't know where to start. But I'll just jump right in.</div>
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Sophie is scheduled to have another surgery. Another two-stage brain surgery. In the first stage, they will place the grids to monitor the seizure activity. Then, two days later, they will perform the actual surgery...<a href="http://www.webmd.com/epilepsy/multiple-subpial-transection-mst">Multiple Subpial Transection</a> (MST).</div>
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I can talk about it so matter-of-factly at times. With no emotions. But the closer we get to the date, the more real it feels. I am starting to feel the weight of it all. I think what scares me the most is how Sophie is going to react to everything. This time around, she is much more aware. But I talked with another mom, Emma, whose son, <a href="https://sites.google.com/site/alexepilepsysurgery/home">Alex</a>, had a second surgery when he was 7 years old. She was able to put my mind at ease a bit after hearing how well (relatively speaking) he did the second time around.</div>
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But, it is brain surgery. And when I sit down and think about it...really think about it...it is difficult. More difficult this time around than the first. I am already starting to feel the panic. We are leaving in exactly two weeks from today. Just typing that...seeing it in writing...brings tears to my eyes. The packing, organizing and what not of getting ready to go out of town is NOT what is putting me in panic mode. It's the fact that I want to soak up <b>every last second</b> of time I have with Sophie before I have to kiss her sweet little forehead goodbye, once again, before I walk out of the operating room. That moment...when you have to pull yourself away...is the hardest.</div>
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<br /></div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com9tag:blogger.com,1999:blog-29367137.post-88370303727249726532011-09-06T11:24:00.000-05:002011-09-06T11:24:26.401-05:00Picture perfect...<div style="text-align: justify;">
She rode the Special Education bus. It's not the bus I had ever envisioned her riding to her first day of kindergarten. Well, at least not before she was born...when all my hopes and dreams for her were of those of <i>typical</i> parents. And then there was a time in my life that I didn't even know if she would go to school. So, riding the Special Education bus is...in fact...a huge milestone for her.</div>
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My dreams for her have changed. It was a hard thing to accept. It still is. And it is an ever-changing dream. Because I still don't know what her future holds. It's not that any parent knows what the future holds for their child. But when you have a medically complicated child, there is so much more unknown about the future. Sophie still has daily seizures. They are affecting her.</div>
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At least when she was seizure-free, I kind of knew where she stood and where she was going. I knew that she would always be developmentally delayed (<i>she did have the majority of her left hemisphere surgically removed</i>). But she was making tremendous gains.</div>
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We have tried a whole list of medications since her latest relapse. Nothing is working. Zonegran did help but the positive effects have worn off. Her seizures are at an all time high since surgery. </div>
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Her speech and language are surprisingly amazing. She is incredibly social. And, of course, the most adorable 5 year old girl. So the combination of those three traits...well...she can pull off appearing typical at times. And I am SO GRATEFUL for that. Not for the fact that she can pull off appearing typical but that her speech, language and social skills are at that level. So I am trying my hardest to enjoy these days. The days where she is five, six and maybe even seven years old and her immature personality will still seem that of a typical child of that age. I know I am probably pushing anything past kindergarten since I already see the "hmmm something is not quite right here" look in the eyes of her peers. Because even though she is incredibly social it's not always <i>appropriately</i> social. One of the reasons I loved preschool so much is that it was a mix of three, four and five year olds...so being immature was easier to blend in. I hope that as she grows with the kids in her class that they will just accept her for who she is.</div>
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And even though I have accepted who she is, I still do everything I can (when I have the energy) to make sure she lives a well balanced life with just enough therapy but not too much. It's a fine line. And Charlie and Elsa definitely help me with that!</div>
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And so does my mother-in-law, Debbie. I can't even begin to list the number of things that she has taught Sophie over the years in such a fun and exciting way. They have an amazingly special bond and she has always been there for Sophie (and me!).</div>
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We are living our lives the best we can. She tries our patience to the fullest extent almost on a daily basis. She pushes me over the edge to where I say and do things that I regret so much that it hurts my soul. And at other times, she can make me so proud that I cry tears of pure joy.</div>
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The first two weeks of school have been a huge adjustment...for me, for Sophie, for her teachers. But we are all beginning to find our way.</div>
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Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com8tag:blogger.com,1999:blog-29367137.post-66168039338648660582011-04-21T00:21:00.003-05:002011-04-21T00:46:18.980-05:00Is it weird that...<div align="justify">I thought Sophie's little pee-drenched footprints were oh so cute???<br /><br /><br />It was 5 minutes before midnight. I was in the bathroom brushing my teeth when I heard Sophie coming down the steps. I knew it was her (Elsa had just woke up moments before and already crawled into our bed). But her footsteps sounded a little different (as I hear them every single night right around this time). I knew something was off.<br /><br /><br />Her pajama pants were soaked.<br /><br /><br />It has been so long since she has had an accident that I can't even remember. It still makes my heart skip a beat (in a happy way) that she is potty-trained. So proud of her.<br /><br /><br />Anyway... So Brandon and I cleaned her up and slipped some new pjs on her. And I went on the hunt for the pee spot...thinking it was probably going to be in her bed. Nope. It was those cute little pee-soaked footprints in front of her bathroom door. She tried. Just didn't make it.<br /><br /><br />(<em>By the way, I just think I am in an extremely good mood tonight because I went to a workshop on ADHD and met a very knowledgeable psychiatrist that is willing to take us on as a new patient even after explaining Sophie's complicated history. Her ADHD has been wearing on me but even more so is trying to find the help/support that we need to deal with this issue. It seems the medical community is more focused on her epilepsy and how complicated and different her case is because of her brain surgery. The psychiatrist did admit that he has not treated anyone like Sophie but that it didn't mean that he wouldn't try his best to help us. See...it doesn't take much to make me happy.</em>)</div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com10tag:blogger.com,1999:blog-29367137.post-86594194979200698692011-04-01T11:50:00.001-05:002011-04-01T12:28:16.706-05:00The flip side...<div align="justify">Before I continue on with my positive streak (I know one positive post doesn't constitute a positive streak but that is the direction I am going to try to go in), I will update on meds and seizures. <br /><br />Since Sophie had her third relapse since surgery, we have made the following med changes... Weaned Dilantin. Added Vimpat. Weaned Vimpat. Reintroduced Dilantin. Weaned Depakote. Weaned Dilantin. Added ACTH. Weaned ACTH. Added Prednisone. Added Zonegran. Weaned Prednisone. Added Vigabatrin. <br /><br />So, currently, she is on 225mg of Zonegran at night and 500mg of Vigabatrin twice a day. <br /><br />She is tired. She is very wobbly. She is not talking as much. <br /><br />She is only having one small, very mild cluster in the early morning. <br /><br />We are waiting to increase Vigabtrin in hopes that some of the side effects will subside. We may have to decrease the Zonegran. And I hope with every last ounce of my being that Vigabatrin will work. Because the next option is to seriously consider surgery. And something as simple as putting on her backpack will no longer be simple. And I cannot bear to go there. <br /><br /></div><a href="http://4.bp.blogspot.com/-0mG8LBc7GZk/TZN_83vTuFI/AAAAAAAABUk/qrj9kFO8Bjo/s1600/004.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5589952246228170834" border="0" alt="" src="http://4.bp.blogspot.com/-0mG8LBc7GZk/TZN_83vTuFI/AAAAAAAABUk/qrj9kFO8Bjo/s320/004.JPG" /></a>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com3tag:blogger.com,1999:blog-29367137.post-52385715053653825302011-03-29T16:14:00.004-05:002011-03-29T16:26:15.685-05:00The little things...<div align="justify">Well, maybe they aren't <em><strong>so</strong></em> little if you had almost HALF OF YOUR BRAIN removed. <br /><br />But here is my attempt to show you all the amazing things that Sophie can do now. Starting with something as <em>seemingly</em> simple as putting on her own backpack. Though, she does make it look easy...don't ya think?</div><br /><p align="justify"></p><embed height="382" name="FLVPlayer" type="application/x-shockwave-flash" pluginspage="http://www.macromedia.com/go/getflashplayer" width="408" src="http://www.onetruemedia.com/share_view_player?p="" quality="high" scale="noscale" wmode="transparent" salign="LT" flashvars="&p=db1a25d189b1665e73abaa&skin_id=701&host=http://www.onetruemedia.com"></embed> <br /><div style="TEXT-ALIGN: center; PADDING-BOTTOM: 15px; MARGIN: 0px; WIDTH: 408px; FONT: 12px/20px verdana, arial, sans-serif"><a style="TEXT-DECORATION: none" href="http://www.onetruemedia.com/landing?&utm_source=emplay&utm_medium=txt4" target="_blank">Make an on-line slideshow at <span style="TEXT-DECORATION: underline">www.OneTrueMedia.com</span></a></div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com5tag:blogger.com,1999:blog-29367137.post-24497923911583312742011-03-10T15:37:00.006-06:002011-03-10T16:18:10.998-06:00The 3rd time is NOT a charm*...<div align="justify">I have written several posts over the last few months. Never to be published. I have so much anger and sadness and guilt with this relapse. It's exhausting and consuming. So I'll update as quickly as possible and hopefully this one will be published.<br /><br /><br />We tried ACTH. It FAILED.<br /><br /><br />I was worried that with the wean of ACTH (actually we switched to Prednisone for the wean) that we would see a steady increase in her seizures. And, at first, we did. But once we got to a higher dose of Zonisamide, the intensity and number of seizures within a cluster started to decrease. She is still having around two clusters a day. Small clusters. Very mild clusters. But seizures they are. On a daily basis.<br /><br />So we are still fighting. We have Vigabatrin in the waiting (just received the package yesterday) along with the ketogenic diet (our appt is in April). We just increased Zonisamide on Monday night so we will give that a chance and see what happens.<br /><br />On a good note. Actually...a GREAT note. We have seen improvement with Sophie's behavior. There has been a lot going on with medications since surgery. After surgery, she was on Dilantin and Depakote. Since her latest relapse in seizures we have...weaned Dilantin, started and stopped Vimpat, reintroduced and weaned Dilantin, weaned Depakote, started and stopped ACTH, started and stopped Prednisone and started Zonisamide. So right now, she is only on Zonisamide. With all that said, I think Dilantin was making her aggressive. And I think Zonisamide is making her calmer. She has been playing independently. She LOVES her iPad. She has been singing a lot lately. She has become attached to a few possessions and seeks them out. I have never seen her do that before. She has a Dora doll with Boots in a pouch, a magic wand and a music box. She'll put all three items in this little shopping cart and push them around. Or she'll just want to hold them while watching TV. I think this is a huge developmental milestone.<br /><br />And speaking of milestones...we had her IEP yesterday. I PROMISE to update very soon with all the progress she continues to make (despite having daily seizures).<br /><br /><br />*<span style="font-size:78%;">This was the third time we have tried ACTH. And this is the third time it has failed. I just <em>knew</em> it was going to work this time. And why not?!?! She has had the majority of her left hemisphere removed...including her left frontal lobe where all the seizures were originating from (according to the grids that were placed prior to the resection). So, I just <em>knew</em> that ACTH would be powerful enough to stop the seizures from this small remaining area that is still active with seizures. I mean...it was powerful enough to make her gain 6 pounds in less than two weeks, have her face puff up with dark circles under her eyes, have wicked mood swings including roid rage, suppress her immune system, lower her potassium level (she had to be put on a supplement) and so much more ugly stuff. All this for the small sum of $130,000 from a company that has HORRIBLE customer service (and I am just talking about this round of ACTH).</span></div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com6tag:blogger.com,1999:blog-29367137.post-32646331781180220032011-01-19T01:05:00.001-06:002011-01-19T01:23:29.300-06:00What a way to start off the New Year...<div align="justify">ER visit (via ambulance), overnight video EEG, MRI, gobs of seizures, lots of medication changes and mood swings. All that on top of the normal <em>this time of the year</em> illnesses.<br /><br />Let's just go straight to the seizures. Sophie had a relapse about 11 months post-op. We increased her Depakote and they immediately stopped. Then she relapsed again 2 months later. We again increased her Depakote and they immediately stopped. (<em><span style="font-size:85%;">But in the meantime, we scheduled a 24hr video EEG. But, by the time we got in for it, her seizures had stopped so nothing could be recorded on the EEG to determine where the seizures were originating from.</span></em>)<br /><br />Then she had her third relapse a few months later (it is now August). So instead of immediately increasing her meds again (hindsight...I believe this was <strong>STUPID</strong>), we decide to go in for another 24 video EEG to figure out what was really going on. Unfortunately, it took at least 6 weeks to finally get in. And they read absolutely nothing new on the EEG. So I (because I blame myself for everything) wasted all that time doing nothing while she continued to seize EVERY. SINGLE. DAY.<br /><br />So we decide to wean the Dilantin* and start Vimpat. Seizures became worse. I was in a panic. I did not know what to do. I felt so completely lost. So depressed. So worthless. So helpless. So I turned to Dr. Chugani. We decided that we needed to see him in person to get some direction on what to do next.<br /><br />*<em><span style="font-size:78%;">Through all the Depakote increases, her level remained in the mid 30s because of the Dilantin interaction. That's why we weaned it.<br /><br /></span></em>Which brings me to 2 weeks ago. A whirlwind of a week. Starting off with the ER visit because Sophie started nonstop trembling at 3am. Something she has never done before. Then we left for Detroit a few days later. Where she vomited at least 4 times in the middle of the night during her EEG. Which almost cancelled her MRI. Luckily, everything worked out and we completed all the testing and met with Dr. Chugani.<br /><br /><a href="http://1.bp.blogspot.com/_IZWvP8GtZZc/TTaMhy0Zz0I/AAAAAAAABUM/MDXsTYtDmCg/s1600/013.JPG"><img id="BLOGGER_PHOTO_ID_5563788901867966274" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="http://1.bp.blogspot.com/_IZWvP8GtZZc/TTaMhy0Zz0I/AAAAAAAABUM/MDXsTYtDmCg/s400/013.JPG" border="0" /></a><br /><br /><div><a href="http://3.bp.blogspot.com/_IZWvP8GtZZc/TTaMhdfN44I/AAAAAAAABUE/fPEKPOoB_UA/s1600/019.JPG"><img id="BLOGGER_PHOTO_ID_5563788896141960066" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="http://3.bp.blogspot.com/_IZWvP8GtZZc/TTaMhdfN44I/AAAAAAAABUE/fPEKPOoB_UA/s400/019.JPG" border="0" /></a><br /><br /><div><a href="http://1.bp.blogspot.com/_IZWvP8GtZZc/TTaMhD6EZUI/AAAAAAAABT8/fIYv4tmO1LA/s1600/223.JPG"><img id="BLOGGER_PHOTO_ID_5563788889275262274" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="http://1.bp.blogspot.com/_IZWvP8GtZZc/TTaMhD6EZUI/AAAAAAAABT8/fIYv4tmO1LA/s400/223.JPG" border="0" /></a><br /><br /><div><a href="http://2.bp.blogspot.com/_IZWvP8GtZZc/TTaMg3Ryl7I/AAAAAAAABT0/MqCanDJ08As/s1600/226.JPG"><img id="BLOGGER_PHOTO_ID_5563788885885097906" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="http://2.bp.blogspot.com/_IZWvP8GtZZc/TTaMg3Ryl7I/AAAAAAAABT0/MqCanDJ08As/s400/226.JPG" border="0" /></a><br /><br /><div><a href="http://3.bp.blogspot.com/_IZWvP8GtZZc/TTaMgezJyBI/AAAAAAAABTs/4TAtlHNz3JY/s1600/231.JPG"><img id="BLOGGER_PHOTO_ID_5563788879314143250" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="http://3.bp.blogspot.com/_IZWvP8GtZZc/TTaMgezJyBI/AAAAAAAABTs/4TAtlHNz3JY/s400/231.JPG" border="0" /></a><br /><br />He got straight to the point. She was having seizures that originated in the left central region (the motor cortex on the side of the brain she had surgery...the only remaining tissue on that side). Since there was a focus we could opt for another surgery.<br /><br /><br /><strong><em>Hold up. Wait. Huh? What? Slow down. Breathe.</em></strong><br /><br /><br />He did back up and say that we should try a few medications first. With surgery, it's like the brain resets itself. So we are able to go back and try medications that she originally failed. Because maybe those medications were controlling the seizures originating in the left central region but not the ones that were originating in the areas of the brain that was removed. So maybe this time around it would be different. Makes sense.<br /><br />She is having Infantile Spasms (I hate that name...sounds way too mild). So we need to start over with the front line treatment for Infantile Spasms.<br /><br /><br />ACTH.<br /><br /><br />Which, at this point, sounds better than surgery. But it still makes the room spin and makes me want to vomit.<br /><br /><br />F**K.<br /><br /><br />That's what I'm thinking. This is f**cked up. You remove almost half her brain and it is not enough for those f**king seizures. They (seizures) want more. Well, they can't have more. She's had enough of her brain removed. ENOUGH. I feel so superficial for wanting to hold on to that little strip of brain. SO SUPERFICIAL. Because if it was any other area...I'd say take it. Which I did...they already have. This is all that is remaining.<br /><br />So we decided not to jump onto the ACTH bandwagon just yet. We weaned the Vimpat and added back the Dilantin and reduced the Depakote. Wishful thinking really. It worked once. Maybe it will work again. We will see. We have the rest of this week to give it a chance. But our local neuro is already getting things started on the ACTH. It won't be so easy to administer this time around. She's 5 years old. She's 46 inches tall. She weighs 47 pounds. She is strong. Not so easy to inject her with a big ole needle in her thigh twice a day. It's not a quick easy poke.<br /><br />So that's where we are at. We have to be very aggressive. We are fortunate the seizures have not yet spread to the right side of the brain which would be detrimental to her learning and development. So, if the ACTH fails, then we will try Vigabatrin. And if Vigabatrin fails, then...most likely...surgery.<br /><br />But, I have to add... I DO NOT EVER REGRET Sophie having the first (and hopefully only) surgery. NEVER. Her developmental gain has been more than worth it. She is amazing. And she continues to amaze us. There isn't a day that goes by where I am just in awe of her. Her speech and language is so rich. And her memory is so clear. She talks in complete sentences about things that have happened months ago.<br /><br />I am holding on to the hope that I do not have to put her through any more pain. I just don't know if my heart can take it. Did I mention that we are also in the midst of all the paperwork and testing for her to transition to kindergarten in the fall?!?!</div></div></div></div></div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com15tag:blogger.com,1999:blog-29367137.post-66538921515448645322011-01-14T23:30:00.003-06:002011-01-14T23:54:18.955-06:00Another blood draw...<div align="justify">I hate the night before Sophie has to get her blood drawn. Because I know what I have to do the moment she wakes up...get her dressed and out the door before she starts demanding food. Then the moment she sees <em>the chair</em>, I have to try my hardest to keep her calm. Then the moment from when they start checking out her veins, I have to use every muscle in my body to keep her screaming, fighting, thrashing body still enough so they can draw her blood. All the while, trying to keep my emotions in check because I am heartbroken in the inside seeing the tears just pour out of her eyes and the snot running down her face. Because this is how much she HATES getting her blood drawn.<br /><br /><br />But NOT today.<br /><br /><br />Today was different.<br /><br /><br />Today was blogworthy.<br /><br /><br />Today started off as usual. I told her she had to go bye-bye with mommy. I didn't tell her where we were going. No need to unless she asked. And she was just happy to be going somewhere. So we pulled into the hospital parking lot. She was excited to get out of her carseat. As we are walking down the hall, she seems to recognize the place. She said to me "we going to see the doctor". I said "yes" which actually did not turn out to be a lie (this is the same building her neuro is in which we ended up running into). We got to the outpatient laboratory and I signed us in. She said "where's the doctor". I said "we have to wait until they call our name". So they called us back and as I was giving them our insurance information, she recognized <em>the chair</em>. She looked at me with the saddest eyes and said "I get shot". I said "yes you are...I am so sorry baby girl". So as we walk toward <em>the chair</em>, she hesitates. Her face is full of worry. I pick her up and tell her it is going to be okay. She sits on my lap and I put my arms around her. They take her arm and tie the band around it. She is remaining calm. As they stick her with the needle, she screams out and flinches. But no tears and she is calm. I tell her to sit really still so they can finish quickly. And she does. She is sitting there watching the entire thing. She says to me "all done". I say "not yet, there is one more vial to go after this (they are collecting four)". They switch out to the last vial and she says "band-aid". I tell her "yes they will give you a band-aid". They finish and she is okay...a little hesitant but still very calm. She picks out a sucker and we are on our way out.<br /><br /><br />I tell her how proud I am of her.<br /><br /><br />And she says "I brave".</div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com11tag:blogger.com,1999:blog-29367137.post-60573189402485304622010-11-19T10:00:00.000-06:002010-11-19T10:02:39.732-06:00So proud of myself...<div align="justify">(<em><span style="font-size:78%;">Note: I actually wrote this post on Tuesday night but I did not want to publish it until Brandon got back in town.</span></em>)<br /><br /></div><div align="justify">It was right before bedtime and I was trying to get Sophie to make a beeline up the steps. As I yelled out for Elsa and Charlie to come join us, Elsa yells back "uh oh mommy...I made a mess".<br /><br /></div><div align="justify">I knew it was going to be a long day. And in the moment that I woke up that morning...I made a decision that I would try with all my might to hold it together.<br /><br /></div><div align="justify">It started off as a fairly typical day. But it was <em><strong>not</strong></em> a typical evening. I was on my own, as Brandon is out of town for the week.<br /><br /></div><div align="justify">So after dinner, I round up the kids and get them in the bath (which is what Brandon normally does). Things are going amazingly well. I get Elsa out of the bath, lotion her up, put on her PJs and blow dry her hair. I do the same for Charlie. As I got Sophie out of the bath, Elsa and Charlie ran out of the room to go play. I do the same for Sophie as I did for Elsa. Usually, Sophie does NOT like the hair dryer and runs off after a few seconds. But not tonight. She sat on the bathroom counter and let me dry every last strand of hair. In the meantime, my head is in la la land as I am thinking about how proud I am of myself at how well I am doing on my own...without Brandon here...and things are going pretty damn smoothly.<br /><br /></div><div align="justify">Let me just say...Sophie's behavioral issues can and do physically and emotionally drain every last ounce of energy and patience that I have on a daily basis. And it <em>is</em> fairly typical for <em>any</em> stay-at-home-mom to count down the seconds until reinforcement arrives...right?!?! Which is what I usually do. And the minute Brandon walks through the door, I feel like everything is going to be okay. Like I made it through another day even though the day isn't over yet. Like there is NO WAY I could have lasted a second longer without breaking down (though I have to admit there are the days where chaos ensues and Brandon walks through the door to find me a heaping mess).<br /><br /></div><div align="justify">So, back to the "uh-oh". As I round the corner, I find Elsa and Charlie standing in the middle of this...<br /><br /><br /></div><a href="http://1.bp.blogspot.com/_IZWvP8GtZZc/TONXULtfgTI/AAAAAAAABTg/OM2T1D5bNtw/s1600/283.JPG"><img id="BLOGGER_PHOTO_ID_5540367970848440626" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="http://1.bp.blogspot.com/_IZWvP8GtZZc/TONXULtfgTI/AAAAAAAABTg/OM2T1D5bNtw/s400/283.JPG" border="0" /> <p align="justify"></a><br /><br /></p><br /><div align="justify">Which I had just steam mopped earlier that day!!!<br /><br /></div><div align="justify">I drop to the ground and just start bawling. I canNOT deal with this right now. I WAS in the home stretch. I WAS going to get all the kids upstairs and shut the gate. Thirty minutes of play time and then I would sneak downstairs to get toothbrushes and Sophie's meds. And then they would all be in bed before the end of the hour. Nope...not now. I pull it together. I strip off Elsa's and Charlie's pajamas and put them back in the bathtub. Which means Sophie is now ripping off her pajamas because there is no way she was going to be excluded (she will try to take a bath or shower, at minimum, five times a day). UGH!!! But...somehow...someway...they are all sleeping at this very moment.<br /><br /></div><div align="justify"><em><span style="font-size:78%;">(Update: And I survived the week. Thanks to the endless amount of patience and love from Grandma Debbie!!!)</span></em></div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com10tag:blogger.com,1999:blog-29367137.post-65446541861989429742010-10-25T13:06:00.004-05:002010-10-25T13:40:49.525-05:00Quite the imagination?<div align="justify">I was decompressing somewhere in the house. Brandon was giving all the little kids a bath. Sophie was screaming her head off. Which is very UNusual for her. She loves bath time. She is constantly trying to find a way to take a bath or shower several times a day. But things have been off lately...ever since we started weaning the Dilantin.<br /><br />I should of helped. But I was too tired. Besides, it was only a few minutes later that Brandon had Sophie out of the bath and wrapped into a towel. It was my turn to take over so he could finish up the other two still in the bath.<br /><br />So I took her to her most favorite place in the house. My bed. Between the position of the room (in relation to the sun) and having the blinds closed, it is usually fairly dark in the room. It is a place I take her to several times a day when she is in sensory overload.<br /><br />She immediately calmed down and smiled at me.<br /><br />So I asked her... <em>Why were you crying</em>?<br /><br />She replied... <em>I was scared</em>.<br /><br /><em>Scared of what</em>?<br /><br /><em>A raccoon</em>!<br /><br /><em>A raccoon</em>?<br /><br /><em>Yes! It was at the front door</em>.<br /><br /><em>It was at the front door</em>?<br /><br /><em>It smell me</em>.<br /><br /><br />At first, I thought...what book are they reading at school. Now I am wondering if it was a hallucination seizure. That thought just entered my head as I was typing this post. Maybe because I had just read this <a href="http://www.articles.complexchild.com/00020.html">article</a>. </div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com6tag:blogger.com,1999:blog-29367137.post-87585582902768354672010-10-19T13:07:00.000-05:002010-10-19T13:07:57.608-05:00EEG results...<div align="justify">We met with the neurologist the morning following the hookup. It is the hospital's procedure to go over the findings and to be sure we got all the data we need before they disconnect. Of course we did, since she has these "movements" every single day. Usually, she has several of these episodes in a 24 hour period.<br /><br /><br />There was no consistency in the EEG pattern with these movements. But, they believe the movements look like seizures so they believe they are seizures. They believe that the scalp EEG is not able to pick them up. In the remaining tissue in her left hemisphere, she continues to have intermittent spiking when she is awake and frequent spiking when she is sleeping.<br /><br /><br />She is currently on Dilantin and Depakote. It is a good combination to be on coming out of surgery because they work through different channels in the brain. But the Dilantin speeds up the metabolism of Depakote, so we were never able to get her Depakote level to a therapeutic dose. With each relapse, we increased the Depakote which would temporarily solve the problem. So we are taking a different approach this time. We are weaning the Dilantin in hopes that it will increase her Depakote level and stop the seizures.<br /><br /><br />We are currently weaning Dilantin with no relief in seizures. In fact, they are more intense. I now have no doubt...they are definitely seizures and they are getting worse. I am not sure what to do. Either her brain needs the Dilantin -or- she is having withdrawal seizures that will eventually stabilize. In the past, EVERY SINGLE TIME we have weaned an anti-epileptic drug (AED), she had withdrawal seizures. Even if the drug did NOTHING to stop the seizures she was currently having.<br /><br /><br />So, we will play the "wait and see" game and hope the past holds true. I really do not want to add another AED. Dr. Chugani suggested Vimpat. That is one she has never tried so it's time to do my research.</div>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com14tag:blogger.com,1999:blog-29367137.post-78449937970131657442010-10-13T10:48:00.000-05:002010-10-13T14:48:05.541-05:00Our Day in Pictures...<div align="center">Happy 5th Birthday and 24 hour video EEG...<br /><br /><br /></div><a href="http://2.bp.blogspot.com/_IZWvP8GtZZc/TLPkMwApBtI/AAAAAAAABSw/Mu5HFZz8cAY/s1600/012.JPG"><img id="BLOGGER_PHOTO_ID_5527012075410884306" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="http://2.bp.blogspot.com/_IZWvP8GtZZc/TLPkMwApBtI/AAAAAAAABSw/Mu5HFZz8cAY/s400/012.JPG" border="0" /> <p align="center"></a><span style="font-size:78%;">Holding her favorite sticker book (thanks Grandma).<br />If your child loves Sesame Street, I highly recommend this.<br />She is learning lots from this book.</span><br /><br /><br /></p><a href="http://1.bp.blogspot.com/_IZWvP8GtZZc/TLPkMCQfEgI/AAAAAAAABSo/7q82OwOSJv8/s1600/029.JPG"><img id="BLOGGER_PHOTO_ID_5527012063129309698" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="http://1.bp.blogspot.com/_IZWvP8GtZZc/TLPkMCQfEgI/AAAAAAAABSo/7q82OwOSJv8/s400/029.JPG" border="0" /></a><br /><br /><br /><a href="http://2.bp.blogspot.com/_IZWvP8GtZZc/TLPiAaQvTXI/AAAAAAAABSQ/6MVd5lab440/s1600/030.JPG"><img id="BLOGGER_PHOTO_ID_5527009664391138674" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="http://2.bp.blogspot.com/_IZWvP8GtZZc/TLPiAaQvTXI/AAAAAAAABSQ/6MVd5lab440/s400/030.JPG" border="0" /> <p align="center"></a><span style="font-size:78%;">No...she wasn't this happy.<br />I asked her to smile and she obliged.<br />But not one tear was shed.<br />We were able to easily distract her.<br />Especially with her birthday present she got moments before...an iPad.</span><br /><br /><br /></p><a href="http://4.bp.blogspot.com/_IZWvP8GtZZc/TLPh_2ZvHXI/AAAAAAAABSI/MMPQSoH7VcE/s1600/032.JPG"><img id="BLOGGER_PHOTO_ID_5527009654765198706" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="http://4.bp.blogspot.com/_IZWvP8GtZZc/TLPh_2ZvHXI/AAAAAAAABSI/MMPQSoH7VcE/s400/032.JPG" border="0" /></a><br /><br /><br /><a href="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLPh_s1DpKI/AAAAAAAABSA/fpYR1B8-QHw/s1600/033.JPG"><img id="BLOGGER_PHOTO_ID_5527009652195435682" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 261px; TEXT-ALIGN: center" alt="" src="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLPh_s1DpKI/AAAAAAAABSA/fpYR1B8-QHw/s400/033.JPG" border="0" /> <p align="center"></a><br /><span style="font-size:78%;">A birthday sign she had made at school.</span><br /><br /><br /></p><a href="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLPh_UzccaI/AAAAAAAABR4/T26MatVY5Y8/s1600/035.JPG"><img id="BLOGGER_PHOTO_ID_5527009645746221474" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLPh_UzccaI/AAAAAAAABR4/T26MatVY5Y8/s400/035.JPG" border="0" /> <p align="center"></a><span style="font-size:78%;">Her incredible nurse decorated her door with the Happy Birthday letters.</span><br /><br /><br /></p><a href="http://4.bp.blogspot.com/_IZWvP8GtZZc/TLPh-oJsUBI/AAAAAAAABRw/PDspJzbUcHE/s1600/040.JPG"><img id="BLOGGER_PHOTO_ID_5527009633759940626" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="http://4.bp.blogspot.com/_IZWvP8GtZZc/TLPh-oJsUBI/AAAAAAAABRw/PDspJzbUcHE/s400/040.JPG" border="0" /> <p align="center"></a><span style="font-size:78%;">Aunt Diane came by for a visit and gave her some fun books to read.</span><br /><br /><br /></p><a href="http://1.bp.blogspot.com/_IZWvP8GtZZc/TLPgoOLvYhI/AAAAAAAABRo/lNLQJasVhuc/s1600/045.JPG"><img id="BLOGGER_PHOTO_ID_5527008149320458770" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="http://1.bp.blogspot.com/_IZWvP8GtZZc/TLPgoOLvYhI/AAAAAAAABRo/lNLQJasVhuc/s400/045.JPG" border="0" /> <p align="center"></a><span style="font-size:78%;">The hospital (along with a gift bag put together from a local girl scout troop) gave her birthday presents and balloons.</span><br /><br /><br /></p><a href="http://4.bp.blogspot.com/_IZWvP8GtZZc/TLPgn5e7LpI/AAAAAAAABRg/JlSf7n2rWbs/s1600/048.JPG"><img id="BLOGGER_PHOTO_ID_5527008143763779218" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="http://4.bp.blogspot.com/_IZWvP8GtZZc/TLPgn5e7LpI/AAAAAAAABRg/JlSf7n2rWbs/s400/048.JPG" border="0" /> <p align="center"></a><span style="font-size:78%;">She has never before been interested in birthday presents.<br />But she ripped right into these!!!</span><br /><br /><br /></p><a href="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLPgntnH6jI/AAAAAAAABRY/4NUyPuajMr0/s1600/053.JPG"><img id="BLOGGER_PHOTO_ID_5527008140576942642" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLPgntnH6jI/AAAAAAAABRY/4NUyPuajMr0/s400/053.JPG" border="0" /> <p align="center"></a><span style="font-size:78%;">Sophie's nurse and someone from Child Life Services.</span><br /><br /><br /></p><a href="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLPgnXg8fEI/AAAAAAAABRQ/vIN5ikHIx2s/s1600/057.JPG"><img id="BLOGGER_PHOTO_ID_5527008134645447746" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLPgnXg8fEI/AAAAAAAABRQ/vIN5ikHIx2s/s400/057.JPG" border="0" /> <p align="center"></a><span style="font-size:78%;">Uncle Jason brought Sophie her favorite meal (chicken caesar salad from Panera).</span><br /><br /><br /></p><a href="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLPgnJUddvI/AAAAAAAABRI/ZxixsEOwlK0/s1600/060.JPG"><img id="BLOGGER_PHOTO_ID_5527008130834986738" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLPgnJUddvI/AAAAAAAABRI/ZxixsEOwlK0/s400/060.JPG" border="0" /> <p align="center"></a><span style="font-size:78%;">Sophie's beloved Grandma came and stayed the day with her.<br />There is no one in the world that she loves more.</span><br /><br /><br /></p><a href="http://4.bp.blogspot.com/_IZWvP8GtZZc/TLXQqsKyY_I/AAAAAAAABTY/yvuUbAfk6qw/s1600/065.JPG"><img id="BLOGGER_PHOTO_ID_5527553549496640498" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="http://4.bp.blogspot.com/_IZWvP8GtZZc/TLXQqsKyY_I/AAAAAAAABTY/yvuUbAfk6qw/s400/065.JPG" border="0" /></a><br /><br /><br /><a href="http://1.bp.blogspot.com/_IZWvP8GtZZc/TLXQqBnVubI/AAAAAAAABTQ/2mjoyhSi3js/s1600/070.JPG"><img id="BLOGGER_PHOTO_ID_5527553538073672114" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="http://1.bp.blogspot.com/_IZWvP8GtZZc/TLXQqBnVubI/AAAAAAAABTQ/2mjoyhSi3js/s400/070.JPG" border="0" /> <p align="center"></a><span style="font-size:78%;">Singing Happy Birthday to her.<br />She pretended to blow out candles.<br />Too cute!!!</span><br /><br /><br /></p><a href="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLXQpzJ8zCI/AAAAAAAABTI/k4ds1u5QhPs/s1600/073.JPG"><img id="BLOGGER_PHOTO_ID_5527553534192307234" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLXQpzJ8zCI/AAAAAAAABTI/k4ds1u5QhPs/s400/073.JPG" border="0" /> <p align="center"></a><span style="font-size:78%;">She had some fun with the icing on her cookie cake.</span><br /><br /><br /></p><a href="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLXQpfQGEtI/AAAAAAAABTA/6gz5KsIeCkQ/s1600/090.JPG"><img id="BLOGGER_PHOTO_ID_5527553528849371858" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLXQpfQGEtI/AAAAAAAABTA/6gz5KsIeCkQ/s400/090.JPG" border="0" /> <p align="center"></a><span style="font-size:78%;">Uncle Jake came by for a visit and brought her a fun birthday present.</span><br /><br /><br /></p><a href="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLXQo7KgAVI/AAAAAAAABS4/JlxmFmA-Imo/s1600/093.JPG"><img id="BLOGGER_PHOTO_ID_5527553519162229074" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="http://3.bp.blogspot.com/_IZWvP8GtZZc/TLXQo7KgAVI/AAAAAAAABS4/JlxmFmA-Imo/s400/093.JPG" border="0" /> <p align="center"></a><span style="font-size:78%;">Daddy and Sophie.</span> </p>Sophie's Story by Elainehttp://www.blogger.com/profile/00415731740298071423noreply@blogger.com6