tag:blogger.com,1999:blog-2019546966145110952024-03-13T17:59:26.110-07:00Life with ButtersButters was diagnosed with Asperger's Syndrome when he was 3.5 then hydrocephalus at 5. Here I talk about the high's, low's, challenges and and all the fun things that happen in between.Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.comBlogger72125tag:blogger.com,1999:blog-201954696614511095.post-78325681749839198952015-02-01T20:31:00.000-08:002015-02-01T20:31:23.661-08:00The sibling connectionLately conversations with Alvin's little sister Elliot have gotten a little more serious. She has started to ask more questions about why Alvin is the way he is and why he sees certain doctors. She tells me sometimes in the car how she wishes we could go places all together but knows we can't because of how Alvin will act.<br />
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Tonight was another one of those moments. While tucking her into bed she asked me why Alvin won't go to camp with her at The Little Gym. I explained to her that years ago when he was in class there some of the kids picked on him. The teachers did what they could but in the end Alvin had his feelings hurt and hasn't wanted to go back since.<br />
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Elliot's first response to this was a very simple comment that she wishes she could do class with him because she wouldn't let the kids pick on him. She would make sure he was ok and having fun. She then told me how she was going to tell him about all the great things that happen at camp and how she would be there for him to make sure no one was mean to him and that would make him go to camp and have fun with her.<br />
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The conversation continued for a few minutes and basically it came down to one common theme. She understands that we are all different, but her brother is just a little more different than others but that's ok.<br />
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Remember in all of this that Elliot is 5. She turned 5 in October and there are many days I have to remind myself of that very fact. She has nights like this where I am in shock. She speaks so clearly and with more compassion for other kids that are different. She acts at times older, partially because she is developmentally about a year or more ahead while Alvin is a year or more behind.<br />
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Don't get me wrong though, when Elliot gets around other kids her age she still has a blast and can completely act like a 5 year old girl in kindergarten!<br />
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Talks like the one tonight remind me why I keep her in mini jets at The Little Gym and why I let her go to camp. The gym and camp are at times her escape. She has expectations on behavior, but for the most part she can just be her silly self.<br />
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In the end what happened tonight just validates one of the things I tell people. Normally when someone finds out about Alvin they tell me how sorry they are. My typical response, I'm not. My kids (Sara, Elliot and Madilyn) are all growing up with this and have a much better understanding and compassion for people of all abilities than most kids their age. So while things are tougher for us than most, all of the girls constantly prove that growing up with a brother with a disability is nothing to be ashamed of or sorry for.<br />
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<br />Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-26326809285225842562014-07-06T12:19:00.000-07:002014-07-06T12:20:06.946-07:00Why I let me son quit playing a sport he lovesFrom about as early as I can remember I played sports. When I was really little I remember doing tap, ballet and then even gymnastics and baton twirling. Nothing really fit for me until I started playing softball. I started playing when I was about 7 until I was probably 11 or so. I remember playing ball with the boys in my neighborhood and generally just loving the game. Playing softball helped me make friends and kept me active outside of school.<br />
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When Alvin took an interest in baseball I was hopeful. My son who knew the rules of the game at 6 years old and could tell you who a player was simply by watching him throw had found the game I loved when I was a kid.<br />
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The first year of tee-ball was a success. While Alvin had a hard time at first watching him learn to love the game made it all worth it.<br />
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This year when the time came to register I was concerned. Due to his age he would be moving up to coach-pitch baseball. I was concerned about the increased skill it would take for him to keep up and also worried about the social aspect. These kids would talk more and expect Alvin to carry on conversations with them. Even with all our concerns we agreed tp let him play understanding that we would once again be put in the position to advocate for our son to be able to do the same things the other kids did so easily.<br />
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The first few practices started out great. Alvin picked up hitting the ball well and did the conditioning (stretching, drills and warm-up running) with only a little guidance. He loved playing all the positions he could and had even come to understand that he wasn't allowed to play catcher because of his "C" on his head.<br />
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Then things started to change. The kids started to catch on that he was different. The coaches brought out different pitching equipment and Alvin couldn't keep up with the changes. He failed to hit a ball in the rest of the practices and never in a game. I started to see the kid that used to love playing the game doing everything he could to get in trouble to not go. One day he started acting up and told me that now he couldn't go to his game because he was in trouble.<br />
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This was the clue that something was up. It all boiled over in the last game he played before we removed him from the team. Close to the end of the game on a rainy and dreary day Alvin was once again up to bat when he was hit in the hand by a pitch in the hand. He immediately got upset and prepared to take his base when he was told not to. In coach pitch rules the player simply gets another try and does not get to take his base. He was crying and the other kids thought it was funny.<br />
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Alvin was so confused and I could see it in his face. He was crying and just wanted to leave.<br />
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It was that day that we made the decision to let him quit.<br />
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The kids picked on him at times and the only thing he was learning was how to avoid being bullied. That night I got in touch with the Monroe YMCA and started to make a change.<br />
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<object class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="https://i1.ytimg.com/s_vi/ig89-39k4fU/default.jpg?sqp=CLTA5p0F&rs=AOn4CLC8NMLqROU7RvXWkxBJ8d0Ce94nNg" height="266" width="320"><param name="movie" value="https://www.youtube.com/v/ig89-39k4fU?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata" /><param name="bgcolor" value="#FFFFFF" /><param name="allowFullScreen" value="true" /><embed width="320" height="266" src="https://www.youtube.com/v/ig89-39k4fU?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata" type="application/x-shockwave-flash" allowfullscreen="true"></embed></object>The next few weeks of starting a new program were rough. Things had drastically changed. There were now many people on the field and the social aspect was frightening to say the least. We met so many great volunteers during the season and by the end Alvin would get to the field early and immediately start pitching.<br />
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The last game was the where it all paid off. Alvin had been through a lot and in the past month and a half not been able to hit a ball on his own. Finally in the last game Alvin got not only one, but 2 hits by himself. His confidence was back and the look on the volunteers faces was wonderful. At that point all of the volunteers had heard his story and knew what he had been through. He and all of the other kids were out there to have fun and do their best.<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/E4G0kyOpG-I?feature=player_embedded' frameborder='0'></iframe>The moral of the story hit home though with Alvin's sister Elliot. Having to explain to her why Alvin was quitting was tough. We don't believe in letting either of them quit just because something is difficult. The goal is to do your best (and with sports at their age) have fun doing it. At 4.5 Elliot learned another hard lesson as well. Not everyone is going to accept her brother or kids like her brother the way we do. She learned that we will fight for all of them when the time comes.<br />
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So where are we now? The YMCA has a few other adaptive sports coming up such as bowling and basketball. Top Soccer should also start in the fall as well.<br />
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For us, things have changed. We always had hoped Alvin could play "normal" or "mainstream" sports. At this point we know that just isn't going to happen. While he continues to make great strides socially and physically he just isn't ready yet. So for now we let ourselves grieve at the new discovery and we move on. We move back to acceptance and letting our goofy kid learn to be himself and have a great time doing it.Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com1tag:blogger.com,1999:blog-201954696614511095.post-74206876016886908932014-02-22T16:05:00.000-08:002014-02-22T16:05:53.273-08:00The Special Needs Spidy SenseOne of the things that W and I seem to have developed like most special needs parents is that ability to sense something is up with another child or adult has more going on than it might seem.<br />
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Two weeks ago was engineers week and with my current job I have the opportunity to go out and present to local schools and talk about what it means to be an engineer and do a small design competition. I've been doing this for 3 years in a row with the same 2 guys and its always fun. This year though during the second class we were presenting at one certain boy caught my eye.<br />
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The second class we taught was twice the size of the first and as the kids came into the library a young boy caught my eye. He was socially more awkward than a the other kids and seemed to be a bit of a loner. Even the table he sat at the kids didn't acknowledge him much.<br />
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During the presentation though is when it all clicked. I called on the young boy to answer a question and as he started to answer the other kids in the class began to whisper. He was instantly frustrated and said he couldn't think with all the other kids talking. Without blinking an eye I told him to think about it and just raise his hand when he remembered and I would give him a turn to answer the quest. After just a minute he was able to collect his thoughts and give his ideas on the topic.<br />
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Once we got the activity started I mentioned to one of the teachers that I felt bad for him. I figured something was up but didn't want to say anything too straight forward in the chance that I was way off base. Sure enough the teacher confirmed that he has autism and is in a special program that allowed for kids on the spectrum to be in class with typical developing kids. <br />
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Later as we were leaving the school the senior manager presenting with me asked how I knew what was going on with the boy. I told him about Alvin and he seemed so impressed. To me it was just second nature to just give him a minute to collect his thoughts but to manager I was with it was far from normal. He then told me he as panicking when it happened because he didn't know what to do.<br />
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I guess when you live with a child like this you just have a sense when something is up in others. W and I have always just been able to feel things like this out when we are out in public, but this was the first time I've dealt with it directly in a social situation that wasn't geared for special needs kids.<br />
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<br />Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-9099152422474149672014-01-01T20:30:00.000-08:002014-01-01T20:57:24.624-08:00Therapy CatBack in February we had a little incident where Alvin let our 12 year old cat out of our sliding glass door one morning and we never found her again. I was heartbroken because we had Katie a female calico since Will and I met and while she was old and temperamental we loved her. Back in early August our good friend brought over about 6 balls of fluff. She had 4 kittens that were ready to be adopted and had 3 that still needed a home I wasn't completely ready for a new cat, but I turned the decision over to Will since he would be home with it more than I would. That day Schrodinger joined our family. He was the last one out of the kennel and the first thing he did was curl up on Will's chest.<br />
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<tr><td class="tr-caption" style="text-align: center;">Their first meeting</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Surveying his new territory</td></tr>
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What has transpired over the past few months is amazing. Alvin wasn't one to show affection to anyone or anything. He was always reserved with his emotions to some degree. When we got our dog Ophelia we thought she would be the perfect companion for him. While she has been a great addition to the family,she didn't bond with Alvin the way I expected.<br />
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The cat has suddenly changed things though. From the time of his first vet visit Alvin started showing more compassion and attachment to this cat. When we took him to get fixed Alvin was comforting him the whole time and showed compassion that we were not expecting.<br />
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<tr><td class="tr-caption" style="text-align: center;">Playing with the dog</td></tr>
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The cat himself fits in well. He plays with Ophelia all the time and keeps her on her toes. With the kids he is gentle and loving.<br />
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What really got me about this cat was when Alvin was hospitalized last month. I've never had a cat that was horribly affectionate or social with us. They were aloof and didn't seem to care much if we were around or not.<br />
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When Alvin was in the hospital Schrodinger just seemed confused. The boy he slept with part of every night was gone.<br />
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Once Alvin came home he was beside himself happy. Alvin wasn't allowed out of his sight most of the night and as soon as he went to bed the cat was right beside him. This cat now even has a small bed in Alvin's bed and he uses it. Most days you can hear Alvin walking around saying "I love this kitty."<br />
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<tr><td class="tr-caption" style="text-align: center;">He loves this kitty and I think the kitty loves him back</td></tr>
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Never before would I have thought that a cat could be a therapy animal but I have been proven wrong. The cat follows Alvin everywhere and slowly but surely seems to be helping Alvin come out of his shell emotionally. An example of this was just last night he asked to have a sleepover in Elliot's bed. Granted this only lasted for about 20 minutes but he snuggled with Elliot. Elliot was beside herself happy that he wanted to and cried her eyes out when he left. </div>
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So I guess I've now come to realize that any animal cat, dog, horse whatever can benefit a child with autism or other brain disorder can really help as long as the child/adult has a bond. In our case it just happened to be a furry little grey fluff ball that needed a home.</div>
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Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com1tag:blogger.com,1999:blog-201954696614511095.post-15901158106345722622013-10-22T19:57:00.002-07:002013-10-22T19:59:36.351-07:00Back to school and back to less sleep<!--[if gte mso 9]><xml>
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So after Alvin's dental surgery it was time to start school. Alvin's sleep
habits over the summer had been gradually getting worse but we figured once
school started it would get better again, but they never did.<br />
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Even with school starting things just have not been getting better. It hasn't
been uncommon to see him up at 3 am and not be able to go back to sleep. He then
would have a full day at school with reading and math, both in his regular class
and resource room. By the end of the day he came home and just melted down.
Things continued to get so bad that I started to video the episodes every
afternoon and evening. While we knew he could do the homework, he was so
exhausted that he mentally couldn't focus and his way of dealing with it was to
scream and cry.<br />
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The screaming and crying episodes gradually kept getting worse until he finally started lashing out at me. The final straw for me was the week before Elliot's birthday he hit me 5 times. That's when I knew it was time for us to discuss it with his complex care management team.<br />
<br />
The same day we were scheduled to meet with the CCM team he actually had to miss school. The night before he didn't sleep at all and was pretty on edge. Once we arrived at the meeting with the lead pediatrician on the team and she saw the video there was no doubt left in her mind. We had been working for the past year on how to regulate things at home and nothing was really working so it was finally time to consider medication. Part of me was ready to hear this, but part of me wasn't. I never wanted to have to result to using medication to control his behavior but for all of our safety it was time.<br />
<br />
The next week was spent by the pediatrician at Seattle Children's talking to not only our pediatrician but also a pediatric neurodevelopmental doctor. The big concern was to find the right medication that would control his out bursts and help him sleep without making him a zombie.<br />
<br />
Finally after almost a week of waiting trazodone. Its an antidepressant drug used to regulate serotonin levels in the brain. We were told we would start out at a low dose then increase as needed to get the desired out come or so we hope.<br />
<br />
Now its been almost 3 weeks and some days it seems to be working while others not so much. He still has his (at times violent) outbursts that are normally directed at me. We still need to give it a little more time though until we say the dose isn't working.<br />
<br />
The other issue that we still need to look into is getting more services through the autism center. His pediatrician at Seattle Children's thinks they could be doing a lot more and we need to follow up with them and see if they have any other areas that could help him.<br />
<br />
Other than these issues school seems to be going well. I have an IEP meeting tomorrow and parent teacher conference next week to discuss his academic progress and how he is transitioning to the new school year. The initial feedback I've gotten from his general education teacher is that he knows the schedule better than she does and always reminds her of when he is supposed to be doing something else!<br />
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<![endif]-->Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-76615250671422987362013-08-22T07:45:00.004-07:002013-08-22T07:46:23.664-07:00Dental Surgery UpdateYesterday was the day 6 months in the making. When we last met with the oral surgeon and saw the issue we had. Alvin had 2 extra adult front 2 teeth. While having one extra tooth isn't all that rare, having 2 the way he did wasn't something she sees every day.<br />
<br />
We got to Seattle Children's around 6:45 and got checked in. By about 7:10 we were back in a pre-op room getting ready. By getting ready I mean we were doing a lot of waiting between nurse and anesthesiologist visits. By about 7:45 we had seen the nurses and met our anesthesiologist.<br />
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<tr><td class="tr-caption" style="text-align: center;">getting ready to go back</td></tr>
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On a side note one of the things I thought was quite funny this time was how many doctors and nurses I recognized. While we were waiting in our room I saw quite a few nursing assistants, nurses and anesthesiologist that I remember from past visits. Just another sign that we have been there in and through that process far too many times.<br />
<br />
We tried to have him take a pre-medicine to help him relax before we went back but this time it back fired and he threw up all over the place.<br />
<br />
When we finally went back he was anxious as expected. First elmo got some of the medicine, then bear and then Alvin laid down and fought a little but did pretty good going to sleep. The anesthesiologist and nurses were all impressed that he eventually relaxed a little and didn't even cry.<br />
<br />
When surgery was over I met with the surgeon she told me what the damage was. His first set of adult teeth were deformed and she went a head and took his baby teeth as well. The issue now is that his next set of adult teeth aren't completely formed yet. It could be another 6 <br />
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months or longer before he has front teeth again! So once again we are on a watch and wait prognosis and have to follow up with his dentist in a few months to check and see how he is doing.<br />
<br />
When I saw him in recovery he looked pretty rough. His mouth was swollen and I could see all of the stiches in his mouth. The staff in the recovery room did all they could to comfort him, but he was so upset that nothing helped. His pain was under control but he was so distraught he couldn't stop crying. Finally the nurse decided he was stable enough to go back to a room and get dressed and recover there for a while. Once in his normal clothes he felt a little better and started trying to drink some apple juice. Then he started throwing up blood which just made things worse. After about 45 minutes in recovery he finally started to keep some fluids down and we were sent home with pain medicine.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPlYmfKrN5wALy4ofW2Jv_c91PnAuUWl5ikcd3uMUBwiKz6xKn0xEBssgAGOfq_EAtGaxQEICyGd4PPU4Xh-KfFOV1KhF2AJtRPRwClX6gN71CGAn8Apbwy0p-5tfM_tOKxHDRxIAepxA/s1600/IMG_20130821_105102_831.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPlYmfKrN5wALy4ofW2Jv_c91PnAuUWl5ikcd3uMUBwiKz6xKn0xEBssgAGOfq_EAtGaxQEICyGd4PPU4Xh-KfFOV1KhF2AJtRPRwClX6gN71CGAn8Apbwy0p-5tfM_tOKxHDRxIAepxA/s1600/IMG_20130821_105102_831.jpg" height="320" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">recovering after surgery.</td></tr>
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<br />
Now at home he remains pretty swollen. His mouth looks really rough and he is supposed to be on a soft/ no chew diet. This hasn't been easy for him since all he wants to do is eat everything in site and just avoid his front teeth.<br />
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<tr><td class="tr-caption" style="text-align: center;">Sleeping at home with his bear after surgery</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg05oOjE0SZZd2ekn7eMqsRdZYADQXuGmkApyni8wkMJiUvzg6VkIHdhhlgW_BgwCPsei3cZ6WPeME8xmumMorwlAkP0A7hi6faQBKLVt4B_LkpNwsURxjlp-95d2uGU6p-7S3DKUON5Ao/s1600/IMG_20130822_074218_830.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg05oOjE0SZZd2ekn7eMqsRdZYADQXuGmkApyni8wkMJiUvzg6VkIHdhhlgW_BgwCPsei3cZ6WPeME8xmumMorwlAkP0A7hi6faQBKLVt4B_LkpNwsURxjlp-95d2uGU6p-7S3DKUON5Ao/s1600/IMG_20130822_074218_830.jpg" height="320" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Day 2 and you can see how swollen he is.</td></tr>
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So now we watch and wait. School starts in 2 weeks and with any luck he will be back to normal by then.<br />
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<br />Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-23319817085150766462013-08-18T19:37:00.001-07:002013-08-18T19:37:21.865-07:00The long awaited meeting and next steps forwardA few weeks ago we finally had our 9 month long wait to meet with the Seattle Children's Autism center. This was a meeting that was talked about in October of last year when we first met with the complex care management team. The biggest fear I had with this meeting was that somehow the doctor/nurse practitioner we saw would look at Alvin's case and determine that he was not on the autism spectrum and we would begin a new fight to keep services that he gets during the school day.<br />
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First off the autism center itself is very nice. From the moment you walk in things are much different than any other doctor's offices we have visited. The lights are dimmed and the ambient noise was pretty low. All efforts are in hopes to make it a calm and inviting area for the kids. There is even a separate waiting room if needed with no noise and low light.<br />
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The meeting itself went well. We talked with a nurse practitioner for about an hour and a half going over everything from his initial diagnosis in Alabama to his eventual discovery of hydrocephalus. In the end after reviewing all the evaluations and reports he concluded that major additional testing wasn't needed. He said Alvin actually falls more on the higher functioning range of the autism spectrum and not really Asperger's at all.<br />
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The main recommendation that came out of this was for a new speech evaluation and further speech therapy. Since Alvin will be attending a mainstream 1st grade class in a few weeks it is important that he be able to communicate with his piers and teachers well.<br />
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Just this past week we met with the speech pathologist and once again Seattle Children's is on top of things. The speech pathologist was great with him and in just a few minutes discovered a motivating item for him (iPad) which helped him complete the test questions and on short breaks he got to play any game he wanted. She was very clear as to what the expectations were and he seemed to warm up quickly to her and completed the testing with no issues.<br />
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The end result was that she felt he needed a lot more assistance with his speech, which we basically already knew. He is age adjusted for speech about 3 to 3.5. He scored very well in answering what words were the opposite of others but when it came to answering questions about a story with no pictures he had a very hard time.<br />
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So the next step is to fight with our insurance to get them to cover the increased need for speech therapy. He is only allowed a certain number of visits before he has to be re-evaluated or they see no need in covering it.<br />
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Also this next week is his big oral surgery. On Wednesday we are headed back to Seattle Children's to have his baby top front 2 teeth removed and his first set of adult front teeth that are extra. They are going to do x-rays right before the procedure to be sure that is all that is going on and hopefully catch everything in one shot. We know already this is going to be a tough surgery and he will be pretty uncomfortable for a while. I've been pretty open with him about what is going on Wednesday and so far he is handling it well. I also have a good plan with the anesthesiologist to have him take a pre-medicine to relax him before he goes back to the operating room to go to sleep. This should help with his anxiety like it did last time and hopefully make it overall much easier on him to handle.<br />
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Right now we know what we are up against and have plans in place to do the best we can. From keeping his favorite bear and super hero cape close by to having plenty of scrambled eggs, pudding, yogurt and ice cream at home for his recovery I think we are as prepared as we can possibly be at this point.Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-71269517628892953252013-07-04T19:17:00.003-07:002013-07-04T19:17:53.517-07:00One year clearOn Tuesday we had our first appointment with his neurosurgeon in a year. The plan was to first do a HASTE MRI then see his surgeon directly after. The day was written in on Alvin's calendar and he knew we would be going to Seattle Children's Hospital that day.<br />
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The HASTE MRI is exactly what it sounds like. The procedure is schedule for 15 minutes but it only took about 10 from the time we got back to go lock up our stuff until the time we were done. This was the first MRI he was ever awake for and when we got back he was nervous as we expected but handled it great.<br />
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Before we left we took bear and put his superhero cape on him. I told him that superhero bear could stay with him the whole time and protect him and that's exactly what happened.<br />
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When the technician had him get on the MRI table super bear was in hand and spent the entire minute or so in the MRI machine with him.<br />
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Afterwards we had the meeting that made us nervous. We met with his neurosurgeon Dr. Lee to find out what the results were of the scan.<br />
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First we ended up meeting with a resident and went over the big things. We talked about the increase in nose bleeds, headaches and how the seizure diagnosis had been removed. The resident then showed us the scans and the good news is that it isn't any worse and things are stable. The bad news was that the healing that we had hoped would happen during the year just hasn't happened.<br />
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<tr><td class="tr-caption" style="text-align: center;">Superbear Alvin being carried around Seattle Children's Hospital to protect Alvin during his appointments</td></tr>
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Then we spoke with Dr.Lee and now considers the brain damage that occurred during the first 5 years of his life as permanent. The headaches at this point are just a part of life now. Its just a known side effect for most people dealing with hydrocephalus. The nose bleeds are something completely different and not related to the hydrocephalus luckily.<br />
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She is happy with his progress and is happy we are in the complex care management study. We were reminded of the warning signs to watch for with him such as loosing language, lethargic and vomiting and if this starts to rule things out with his pediatrician or urgent care first and then if needed they will send us to the ER for further evaluation.<br />
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So now we are back to maintenance mode. Watch for all the signs and of course try and keep him from hitting his head.<br />
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The next steps for us in the coming months are oral surgery to remove his extra set of top adult teeth and an autism evaluation this summer. The oral surgery is going to be pretty invasive and leave him with no front teeth for a while and the autism evaluation will hopefully be scheduled soon or at least that is what hope will happen.<br />
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<br />Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-78709946744347112702013-06-15T20:39:00.002-07:002013-06-15T20:40:22.823-07:00T-ball 2013 The good, the bad and the weirdAlvin's first t-ball season is officially now over and its such a relief.<br />
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Over all I would consider the season a success for him. It started out in April which in Washington means the cold weather is still hanging around and the first few practices were quite cold. Alvin was normally the only kid in shorts (because we couldn't manage to get him to wear anything else!) and never complained about the cold.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikhTVKddzLQbe7bEihhPnwks6AiEyoSWeOiifE3dQuOdTmBPD1OCbq-yRoebInN0JLGFwVZEbXpyX6jtxwiDtyNFi_Ts2VlOxPc7jFctW3_X7rExB0rhDLZeVpB55dXa3i7_9VjhiPgeU/s1600/IMG_20130422_174738_593.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikhTVKddzLQbe7bEihhPnwks6AiEyoSWeOiifE3dQuOdTmBPD1OCbq-yRoebInN0JLGFwVZEbXpyX6jtxwiDtyNFi_Ts2VlOxPc7jFctW3_X7rExB0rhDLZeVpB55dXa3i7_9VjhiPgeU/s1600/IMG_20130422_174738_593.jpg" height="320" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Making sure he is in the right place</td></tr>
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Alvin started off as awkward as ever. He was in a group of kids he didn't know and tended to not try to engage them. During warm ups instead of throwing the ball with other kids he preferred to go out to the outfield and pretend to pitch like a pro. </div>
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The first few rounds of batting were also rough. The combination of hydrocephalus and autism make hand eye coordination really tough, so swinging a bat to hit a small ball was quite a challenge. There was one practice that I remember specifically that he missed the ball 6 or 7 times. The kids on the team started talking and snickering a little but he was determined as ever to do it.<br />
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Overtime he gradually started catching on. He started to throw, not like a major league pitcher every time but more like a normal player. When he couldn't figure out how to stop a ground ball with his glove he made up his own way with his foot.<br />
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Batting though was always fun for him during games. Every single time he walked up to the plate and did a routine to get ready just like the pros. The funny thing is when he did it all the way through he was more able to hit the ball. When the coaches stopped him from doing it then he had issues making contact.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsCQdSngJpNHnZclZatkN0l2qVI-NYDE03nKD_1RZc1BDLgG0X6ZpyAs7WxSGnBIQ-Xe4eu4wzgwMbnF7d9WLy_AgE5gFdpN0_nwCD3YafC4-rrZvcdayWYSoDPPwgiZUe7RpGJorZPV0/s1600/IMG_20130427_161120_183.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsCQdSngJpNHnZclZatkN0l2qVI-NYDE03nKD_1RZc1BDLgG0X6ZpyAs7WxSGnBIQ-Xe4eu4wzgwMbnF7d9WLy_AgE5gFdpN0_nwCD3YafC4-rrZvcdayWYSoDPPwgiZUe7RpGJorZPV0/s1600/IMG_20130427_161120_183.jpg" height="320" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing first base</td></tr>
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The highlight of the season though was the last game. As I said due to the combination of hydro and autism hand eye coordination is rough. Well the kids had been working on hitting coach pitch balls for a couple of weeks and Alvin hadn't had much success. The last game of the season Alvin did the unexpected. On his second pitch from his coach he acts like he is going to bunt then hits it! The coach was shocked and all the kids were cheering. The next at bat the same thing happened and he was able to make contact and run to first base again. The coach later told me that once the other kids saw Alvin hit the ball every single one got a hit when they went up.<br />
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So the question now is, will we do it again? Right now, I am saying maybe. There is a lot he can learn by being around other kids his age. He is thrown into it and with very little adult help is slowly pushed to interact with other kids his age. He is still very shy and anxious but every little bit of social interaction lessons are worth it.<br />
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<tr><td class="tr-caption" style="text-align: center;">Team picture</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">End of the year party</td></tr>
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Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-73883698781843200002013-06-06T05:28:00.000-07:002013-06-06T07:23:52.451-07:00Superheroes come in all sizes<br />
A few weeks ago I was contacted by Robyn founder of Tiny Superheroes. Her mission is to send kids capes that are battling all kinds of different issues. The first time i saw her blog i was hooked. Reading about these kids facing so many obsticles was amazing. <br />
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She asked us if we would be involved in creating a video about the capes and about Alvin's combination of conditions and we jumped at the chance.<br />
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Below is the video profiling Robyn and the amazing influence she is having on so many families as well as telling Alvin's story in a new light.<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/nVsIhJtRRNY?feature=player_embedded' frameborder='0'></iframe></div>
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Robyn is also running an <a href="http://www.indiegogo.com/projects/tinysuperheroes-empowering-extraordinary-kids-one-cape-at-a-time?c=home">indiegogo</a> account setup to continue to help even more kids and families. Please check it out and consider helping her empower more kids through <a href="http://tinysuperheroes.com/">Tiny Superheroes</a> like she did for Alvin and Elliot!Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-66625526282976718962013-04-18T06:38:00.003-07:002013-04-18T06:38:53.611-07:001 year later<!--[if gte mso 9]><xml>
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April is Autism awareness month and yet for me this week all I can think
about hydrocephalus.<br />
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One year ago this week we met with a neurologist who showed us Alvin's MRI
scan and told us about the cyst in his brain. He said not to worry but we would
be referred to a neurosurgeon to see if surgery was needed on the cyst or not.<br />
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Two days later we got the call from neurosurgery at Seattle Children's
Hospital neurosurgery department saying that he actually had hydrocephalus and that he would probably
need surgery the next day.<br />
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I remember distinctly the day we heard the words hydrocephalus. The rest of
the day and night W and I spent hours <span style="mso-spacerun: yes;"> </span>researching on line what the treatment options
were and trying to get in our heads what was going on.<br />
<br />
<a href="http://lifewithmybutters.blogspot.com/2012/04/mri-results-cyst-and-hydrocephalus-oh.html">On 4/20/12 we met with his surgeon Dr. Le</a>e and started on this journey. She
went through the options with us and suggested an ETV (endoscopic third
ventriculostomy) instead of a shunt to treat his hydrocephalus. She said he may
need a shunt later in life, but with a high failure rate, if we could do the
ETV and it work we would have a better overall outcome for him. The news of the
surgery followed a flurry of activity of an eye exam to be sure his optic nerve
wasn't compressed then signing forms and prepping for surgery.<br />
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<br />
On 4/20/13 Alvin will play in his first tee ball game. While some parents
will be there and hoping that their kids make a good play or hit the ball into
the outfield, our thoughts will be in a different place. We won't be concerned
with the things that other parents are worried about. Instead the thoughts of
how far he has come in a year will be more on our minds.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYvIRTWuoiWUj62dXlkmgAf2IXf1QOpBHJnBVUx4hwrCQ6HoM98OU5BFCwBDIc5bYAYjX9Aa3SOhS89-NriMKrzS-aP6qLSYE5uLGkoW-t_VWssmTZyZtCYCX20cwQtcvnK3-Qie379YA/s1600/IMG_20130413_103335_546.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYvIRTWuoiWUj62dXlkmgAf2IXf1QOpBHJnBVUx4hwrCQ6HoM98OU5BFCwBDIc5bYAYjX9Aa3SOhS89-NriMKrzS-aP6qLSYE5uLGkoW-t_VWssmTZyZtCYCX20cwQtcvnK3-Qie379YA/s320/IMG_20130413_103335_546.jpg" width="180" /></a></div>
One year ago he was having major surgery to alleviate the pressure in his
brain. <a href="http://lifewithmybutters.blogspot.com/2012/04/1-week-after-surgery-follow-up.html">One year ago he was in the ICU and our world had just been turned upsidedown.</a> The last year hasn't been easy. With a<a href="http://lifewithmybutters.blogspot.com/2012/06/so-first-off-please-forgive-me-if-this.html"> site infection </a>and numerous scares
from his inability to communicate have kept us on our toes. Both W and I are
constantly on the lookout for the signs that things are going wrong.<br />
<br />
Now one year later he is playing a game he loves with normal kids. He amazes
me all the time at how far he has come in the past year, but right now it hits
the hardest.<br />
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<![endif]-->Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-6235577801160580422013-04-13T21:48:00.002-07:002013-04-13T21:55:20.777-07:00The dark sideLately I have been wanting to write about things but with the challenge of a teething baby, a normal 3 year old and dealing with all of Alvin's challenges the words have been slow to come and the decision to talk about things has been hard.<br />
<br />
Alvin in general has been doing well. He is still catching every bug out there and his dentist issue is just odd, but then again what's new. The dentist found out that he has 2 extra front teeth that will need to be removed some time in the next couple of years and will need to be followed closely by a oral surgeon to be sure they are removed at the correct time.<br />
<br />
What I want to talk about now though is something that I haven't really mentioned before. The quote "Will you love me even with my dark side" comes to mind in what we have been dealing with things lately.<br />
<br />
Back sometime at the end of last year as Alvin became more verbal his outburst also became more present. These outburst are normally confined to home and normally happen when he's stressed or had a hard day.<br />
<br />
These outburst I'm speaking of are only directed at myself and husband in the form of screaming at us, hitting or kicking. They are never directed at other kids or his sisters, but just us. He gets frustrated with something as simple as not being able to find a lego figure or Elliot taking one of his many hot wheel or just singing.<br />
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What ever the reason the outbursts are never seen as ok and he never gets away with them without some form of punishment (losing his leap pad, going to bed early, ect).<br />
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I do though however understand them. He gets so upset and angry when things don't go his way and he can't deal with the change. He knows that he is safe at home and with us so that is when he acts out.<br />
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So why am I saying this, partially because it needs to be said. This isn't a part of autism that is talked about much and it needs to be said. Alvin underneath it all is still a good kid. He loves his siblings and dog and loves to play baseball.<br />
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Alvin though has started to understand that he is different. Kids in tee ball try to talk to him, but he can't. He wants to play/interact with other kids at times but struggles to figure out exactly how to do it.<br />
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So what is next? The next step is to talk to his complex care management team about it and push to have the new autism evaluation completed as soon as possible. With the autism re-evaluation completed we can be referred to a specialist who can help us and him deal with the changes that we are beginning to face.<br />
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So while we may be encountering his dark side right now we are far from being done with the fight to help him overcome it.Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-91566008864326488182013-04-08T09:39:00.002-07:002013-04-08T09:39:39.212-07:00IEP and extra helpSo I survived another IEP with my sanity in tact! The meeting itself went pretty well. The biggest success they mentioned was that he was on track with his math skills and at or above level for all academic math concepts.<br />
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He is steadily making progress with his handwriting and coloring but still needs help to color the full areas. The team agreed that he is very aware of where his strengths and weaknesses are and since handwriting and coloring are weak he tends to do them as fast as possible and with the minimum amount required.<br />
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He is grasping all spacial concepts in 3D but has a hard time translating them to a 2D world.<br />
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He is also having issues with story time. He will sit and listen but has a hard time retelling the story or answering questions regarding what he just heard. He needs a lot of work in this and is just making slow progress. Luckily I was able to get him into a group speech therapy session one day a week that is going to work on just these major weaknesses. It will go from the beginning of April through the end of the school year and will hopefully provide just a little extra help.<br />
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The other area of concern is his social skills. If he is playing in an area and another child comes over, he will stop what he is doing and leave. Other kids typically try to interact with him but he can not carry on a conversation with them. The team recommended some more testing to quantify this gap and make sure it becomes an integral part of his IEP going forward. The team did agree that the idea of him playing tee-ball with other kids from his school is a great idea and will hopefully find a common ground to talk to other kids.<br />
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So the recommendation going forward is to transfer him schools next year for first grade. This will allow for him to be in the least restrictive environment and go back and forth to a mainstream class while getting the help he needs in other areas.<br />
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Our next meeting is scheduled for May 7th to finalize 1st grade plans. The decisions we are starting to make going forward aren't exactly easy but I know that we are in a good school district and between his teachers and myself and W we are looking out for what is best for him in the long run. The path isn't going to be the easiest but we know going forward that he will need a little pushing and help and that's fine with us.<br />
<br />Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-44216807464866090982013-03-24T22:08:00.000-07:002013-03-25T11:54:34.652-07:00Happy Birthday Alvin<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwrEEqStmB_jaDOgaRP79Og6f2pyTcmJLSL-c9dkYQtbOQwB5IjBM6gCxE38FHzyaaVTj3VB7bIejPn_UHlrk5HPyd1rdfS6P6Pe5aCO0rrwoUTs0B8qo8w5cuf3nJSITMGRfTHJKhZFM/s1600/2012-12-25_16-37-29_966.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a>Today Alvin turns 6.<br />
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Happy birthday Alvin. Today you turn 6 years old. Every day you manage to challenge us, make us laugh and scratch our head all at the same time.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwrEEqStmB_jaDOgaRP79Og6f2pyTcmJLSL-c9dkYQtbOQwB5IjBM6gCxE38FHzyaaVTj3VB7bIejPn_UHlrk5HPyd1rdfS6P6Pe5aCO0rrwoUTs0B8qo8w5cuf3nJSITMGRfTHJKhZFM/s1600/2012-12-25_16-37-29_966.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwrEEqStmB_jaDOgaRP79Og6f2pyTcmJLSL-c9dkYQtbOQwB5IjBM6gCxE38FHzyaaVTj3VB7bIejPn_UHlrk5HPyd1rdfS6P6Pe5aCO0rrwoUTs0B8qo8w5cuf3nJSITMGRfTHJKhZFM/s320/2012-12-25_16-37-29_966.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is what happens when I leave a stamp out!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbc5nZksO5ArW0tZ7OfvHkewjcZHFx2aSmOJjuvKYb7d9H0RkrNOxlVoI3v3IrwXxz-yDzsaizq6l0CB9D0CYjoZg-WIi0SCCXk49LZgROOCn_nlTAr5gInZtqI3DhfVmsnzzphqt0xkc/s1600/2013-01-21_18-12-41_334.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbc5nZksO5ArW0tZ7OfvHkewjcZHFx2aSmOJjuvKYb7d9H0RkrNOxlVoI3v3IrwXxz-yDzsaizq6l0CB9D0CYjoZg-WIi0SCCXk49LZgROOCn_nlTAr5gInZtqI3DhfVmsnzzphqt0xkc/s320/2013-01-21_18-12-41_334.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cuddling with his baby sister</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLDuygW82PY3wKsH2t9B2PDIQrMhPPUewvWbHQyI8kBrEFbnHr5Icsaiv44FUtXwygk16zHWEHBU5Efo8_9JhCtJN-rL53RGzzd-GRcpof1lbABqzHTzyBofZy7WzDdYblnZfOaypU7zA/s1600/2013-01-27_13-05-24_121.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLDuygW82PY3wKsH2t9B2PDIQrMhPPUewvWbHQyI8kBrEFbnHr5Icsaiv44FUtXwygk16zHWEHBU5Efo8_9JhCtJN-rL53RGzzd-GRcpof1lbABqzHTzyBofZy7WzDdYblnZfOaypU7zA/s320/2013-01-27_13-05-24_121.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Running the bases at Safeco Field</td></tr>
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The past year hasn't been easy for you, but youhave come out of each issue with a smile and a great attitude.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUY6MV6uO8yy1GvSO6tNqSmkAQG2qoKgDl18bN6xB0aeTpXv6OtGXnAdcihv2_bqUQVIA_EAz6jJKHTx-XbNcPJ1Qw3eNXemO6ShC4Zzxq0Gl5ZP5NrBxGImFz7uDmFnoTo9YtuVLB5Tg/s1600/2013-03-10_11-19-14_825.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUY6MV6uO8yy1GvSO6tNqSmkAQG2qoKgDl18bN6xB0aeTpXv6OtGXnAdcihv2_bqUQVIA_EAz6jJKHTx-XbNcPJ1Qw3eNXemO6ShC4Zzxq0Gl5ZP5NrBxGImFz7uDmFnoTo9YtuVLB5Tg/s320/2013-03-10_11-19-14_825.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The highlight of our Chuck-E-Cheese trip. Seeing him be able to hold himself on a moving horse.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6ZfvKPz26y2OEX21SKAS2Tm9XoGwWSipvpLMeWBbpHfrv5QgGpMUJOTlGdhhf3rOqVXlmfpRMv97A55_TBvg9QHvhTenICglv51GncJy9Zfh8jFUOQID06JJrYkLhx6HMpQkRylv3kvo/s1600/2013-03-09_15-36-49_392.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6ZfvKPz26y2OEX21SKAS2Tm9XoGwWSipvpLMeWBbpHfrv5QgGpMUJOTlGdhhf3rOqVXlmfpRMv97A55_TBvg9QHvhTenICglv51GncJy9Zfh8jFUOQID06JJrYkLhx6HMpQkRylv3kvo/s320/2013-03-09_15-36-49_392.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Who says you have to sit on a swing to have fun. Playing superman is much more fun.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnIW9m20Q23hE_LTgxFkvA_5pj51HrvJwWJHgF9i3UFi9pF0KJh0Q7xXKJ6-lfi6DvWJIsXXZs9J6kfrkzTefFo8rnjzkuw1BhZyx_e6tAJAhrAv8HGWx_WvO0jo4S-FjgBkF7lU1vR2Y/s1600/2013-03-16_20-34-43_835.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnIW9m20Q23hE_LTgxFkvA_5pj51HrvJwWJHgF9i3UFi9pF0KJh0Q7xXKJ6-lfi6DvWJIsXXZs9J6kfrkzTefFo8rnjzkuw1BhZyx_e6tAJAhrAv8HGWx_WvO0jo4S-FjgBkF7lU1vR2Y/s320/2013-03-16_20-34-43_835.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cuddling with his favorite bear.</td></tr>
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So happy birthday Alvin. We couldn't be prouder of all you have overcome in the past year or the little man that you care becoming.Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-68027302759598866952013-01-27T21:12:00.002-08:002013-01-27T21:12:34.287-08:00The Sibling ConnectionThere is always talk about the affect that having a brother or sister with autism and what affects that it has on their relationship and overall experience growing up. As Elliot and Alvin get older I am starting to understand more of what this really means.<br />
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Over the past few months I have seen the relationship between Alvin and Elliot change and grow. One thing that I expected was for Elliot to be a very good big sister to Madilyn and take on the big sister roll well. What I didn't expect is for her to begin to take on the big sister roll to Alvin.<br />
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Over the past year with all of our visits to Seattle Children's and Alvin being hospitalized twice for about a week each Elliot began to understand things. She began to understand that he isn't like other kids his age or hers. Slowly over time she became protective. As in you mess with him without her permission and you will pay dearly. When we are home she messes with him and beats him up like any good big sister.<br />
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The funny thing is when they are separated they each get a little lost. At school when the year started Alvin had some issues. He was apprehensive going into class and interacting with the other kids.<br />
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This past week Elliot went to a camp at the little gym without him and honestly just looked lost. Alvin had a rough day and we thought she could use a little time with other normal kids just to have fun. When we got there she just stood there at first just looking for another kid she might know, but overall just looking lost from not having him with her.<br />
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I honestly think though that Mac, Elliot and Madilyn will all be better people for having a sibling like Alvin. Elliot especially has seemed to learn so much about being around kids and adults with special needs and instead of shying away from people that are different she is drawn to them.<br />
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So maybe having a sibling isn't such a bad thing or burden like it is sometimes made out to be. Maybe those of us with kids with autism are actually giving their siblings something that will benefit them far beyond their childhood.Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-2311988710412825502013-01-13T14:15:00.002-08:002013-01-13T14:15:44.083-08:00The next stepsSo during our first complex care visit we mentioned that we had some concerns about his teeth. Dentist appointments have always been a nightmare and he was well overdue for a visit. They understood our concerns and referred us to a dentist that works with as a partner with the University of Washington in dentistry and only sees kids on the autism spectrum on one certain day of the week.<br />
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We had the appointment last Monday and just like last year tested our health insurance, this year our dental insurance will be tested. Turns out he has cavities in his top front 2 teeth and some of his back teeth. He has a chipped tooth and an abscess on his gums.<br />
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Once again you think all of this would have hurt and he would have shown us that something was wrong, but he didn't. He never acted painful. A while back when we were dealing with the onset of learning about him having hydrocephalus I said that I just wish he could have shown or told us he was in pain. Once again I just wish for a little bit of that communication. Because of his high pain tolerance and inability to tell us something is wrong we are left in a bad place. We can never be sure he's ok. We never know if something is wrong or hurting. As a parent this is something that hits both of us pretty hard. We are still hopeful that one day things will change but for now this is just the way it is.<br />
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So now we wait for a call from the scheduling department for oral surgery. This is going to be another major surgery for him at Seattle Children's but should just be out patient. The amount of work they need to do is staggering, but we know its for the best. Once this is taken care of we can start trying to get him back on track with his dental needs and start getting him used to the dentist again.Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-82761887624948929392012-12-31T21:34:00.000-08:002012-12-31T21:34:59.143-08:00I'm backFirst off I apologize for being gone for so long. With the end of my pregnancy things just got crazy and I ended up just posting bits and pieces to facebook and twitter rather than sitting down to actually write.<br />
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Now that Alvin's baby sister is here and I'm back at work, things are starting to calm down just a little. Well at least until the first of the year.<br />
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The biggest thing going on right now is our family was asked to participate in a research study at Seattle Children's Hospital. Its called the Comprehensive Care Management study. About 600 families were selected and of those half are in the control group and half are in the intervention group. We are in the intervention group and are meeting with staff once a month to meet with a pediatrician, dietitian nurse practitioner and when needed a social worker. The first meeting we had was rough. It was 2.5 hours of meeting with each individual on the team and going over everything that has happened up until that point. From the autism/asperger's diagnosis to the more recent hydrocephalus discovery. It was draining to say the least. The staff was great but in the end it felt like everything we had ever done for him was questioned.<br />
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We met with a nutritionist, doctor and nurse for 3 months straight once a month to go over not only health issues but also his weight issues. Now that things are calming down we have a 3 month break and in that time he will be seen by a pediatric dentist who specializes in autistic kids, a neurogenetics screen and the staff is having us re-do is autism screen as well just to be sure we know the extent of his autism.<br />
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We had another scare with his seizures returning and so far the MRI's show that his ETV path is clear but the underlying cause is still unknown. I can't stress enough how great the staff at Seattle Children's has been through all of this. The doctors, nurses and all staff we have interacted with have been wonderful in accommodating him as well as the rest of the family. The staff in the research study haven't treated us like a number but as actual people that are doing the best we can with what we have been dealt.<br />
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So this next year I plan to be back. I have a lot of things I want to talk about. Some with autism and some with hydrocephalus and some with both. So I apologize for being gone for so long but my plan is in 2013 to be back in force to talk about life and issues that come from having a son that is literally one in a million.Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-68887377970865711152012-08-08T20:44:00.001-07:002012-08-08T20:53:07.087-07:00Working with kids with special needs<br />
In the past I have talked about working with kids at Space Camp in
Huntsville AL with kids that were deaf and or blind. Out of all the groups and
kids that came through in a year both W and I fell in love with these kids more
than most. Sure they had challenges, but many of them had developed a sense of
humor and wit about them that knew no bounds. As a counselor leading these kids
through activities things were more hectic than normal and quite challenging at
times.<br />
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Then there were the moments that made it all worth it. W has many stories of
taking kids down in the Underwater Astronaut Trainer (UAT) in full scuba gear
and watching them just light up. I personally saw kids that were deaf and or
blind conquer simulators that made most kids apprehensive a the thought or site
of them.<br />
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So how does any of this relate to having a son with autism and
hydrocephalus? These kids were fighters and their ambition knew no bounds.
These kids faced challenges early on like Alvin has. These kids all grew up
knowing they were different to a degree and let nothing stop them.<br />
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In a way I feel like our interaction prepared us in a very small way for
what was to come. Both W and I have had many a sobering moment over the past
few months. After saying the words “incurable neurologic condition” so many
times to different people and explaining that the future is anything but
certain for him the weight of the situation just hits. The stares that we
continue to get and his gradual realization of what is going on can be a lot to
take. Some days with all of this going on the only thing we can do is remember
how far he has come.<br />
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A couple of weeks ago Alvin started back in gymnastics. I had no clue what
was going to happen but after seeing his favorite teacher and getting to fully
participate in a class he was beaming from ear to ear. That night he had
accurately and appropriately answered questions in class. At the beginning he
was asked if he could have one super power what would it be and he said “flying
really fast”. During stations he scared us all when he ran up to the bar
and threw himself up and stayed there locking his arms out and just grinning.
We were all in shock when it happened because no one really knew what to
expect. Since then he has even begun to give verbal acknowledgement to the
teachers when he finishes a skill by giving a high 5 and saying “yes! I did it!”<br />
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I apologize in advance for the video quality. I was taking this outside the glass with a glare from the sun coming in. </div>
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I guess what I am getting at here is to remind not only myself, but also any
others that may work with kids with any kind of special needs not to focus so
much on what they can’t do but remember what they can do. If Alvin and the kids
I worked with at Space Camp taught me one thing is that they do anything if
given a shot. The medical professionals we work with are trained to give us the
cautiously optimistic answer to everything. Its up to us to help these kids
defy what they tell us in anyway possible.<br />
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Is it tough, in a word YES. Its very hard to work to find programs where the
child might fit and work with staff enough to help them understand what is
going on. I can’t even tell you how mnay times its just killed me seeing Alvin
try and talk or play with another kid just to get rejected due to his lack of
communication and social skills. The thing we have to remember though is all
the stuff that we fight for now will benefit them in the end. The more we fight
for acceptance and fight for them to have “normal” lives the better chance that they will grow up confident in what they can do instead of focusing on what they can't do.<br />
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Being an engineer I am fascinated by working through
problems and finding out what is really causing them. After Alvin’s second set
of MRI’s I requested a copy for personal use and was pleased that the hospital
sent them to us pretty quickly and I immediately started looking at his head
and putting the pictures together with everything that we had been told.</div>
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Alvin has obstructive hydrocephalus which is just what it
sounds like. There is an obstruction (in his case a cyst) that is blocking the
flow of spinal fluid. In his case the cyst is blocking about 80% of the space
between his 3<sup>rd</sup> and 4<sup>th</sup> ventricle.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkAnC8LlGTCO7dEDR0oK5X8EXVDGJYsFuKWdTemAxfY28nEjm1AP8iica38xnyixSoaJN86DjAdqXq3PszGkvd7nz0Vatb4W3UHkVsaOKBdQD0cY6JUQS4_WF6cCtMOmxjirJf3wYgTdo/s1600/side+view+cyst.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkAnC8LlGTCO7dEDR0oK5X8EXVDGJYsFuKWdTemAxfY28nEjm1AP8iica38xnyixSoaJN86DjAdqXq3PszGkvd7nz0Vatb4W3UHkVsaOKBdQD0cY6JUQS4_WF6cCtMOmxjirJf3wYgTdo/s320/side+view+cyst.jpg" width="267" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Arrow pointing to the cyst in question</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUZJ0d2jOP4FE8ynVI7au4XPlGPCe99dbLOWd2uyBGU7ZQ6BQ-X1ZbdLInlMAPBTmNvtx-m7Z1utMOrtNxpq8oybYQ6SFJkMsRkheoBW_gUrIbToW-BKYPJn5h5EeL9RlIaCqEsRKVKjE/s1600/top+view+cyst.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="128" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUZJ0d2jOP4FE8ynVI7au4XPlGPCe99dbLOWd2uyBGU7ZQ6BQ-X1ZbdLInlMAPBTmNvtx-m7Z1utMOrtNxpq8oybYQ6SFJkMsRkheoBW_gUrIbToW-BKYPJn5h5EeL9RlIaCqEsRKVKjE/s320/top+view+cyst.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Close up view of the cyst</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfGlodlVn8kpU8-QnGZ3SixuZw_X-664SuiBdQG1Q403wT5RZgLbfyWi3zngZKQPxcC7um_3gC4i6B3R4IOljbija-1aqCaJK2O31NTPTkKUUvEFAmnOl5dUDuQJt-ftNqBblp2xbZDdk/s1600/top+view+cyst+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfGlodlVn8kpU8-QnGZ3SixuZw_X-664SuiBdQG1Q403wT5RZgLbfyWi3zngZKQPxcC7um_3gC4i6B3R4IOljbija-1aqCaJK2O31NTPTkKUUvEFAmnOl5dUDuQJt-ftNqBblp2xbZDdk/s320/top+view+cyst+2.jpg" width="293" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cyst sitting in the middle</td></tr>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">This cyst from what we are told
could have been there since birth but no one really knows for sure. His head circumference
was always on the high side but nothing that was out of the ordinary so his pediatrician
never even questioned it. He was a little late walking and crawling but nothing
that raised any red flags to anyone. </span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">So after 5 years (or so) of the cyst
growing this was one of the first images that the surgeon saw of his left and
right ventricles.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcuL-xwhQeyr5_QmZ4w0NIcqZhxpRm9atXL-W9xqZBSAbVihdm67hUhMnLb1cYjo3Y8GUfMy00DMm3ZqkeZJ-xdjeWmGJ0eZ4pLdOr0slJBsqipX6xtR61cItG6A_fgkNME316OEMBQ9w/s1600/ventricles+before.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcuL-xwhQeyr5_QmZ4w0NIcqZhxpRm9atXL-W9xqZBSAbVihdm67hUhMnLb1cYjo3Y8GUfMy00DMm3ZqkeZJ-xdjeWmGJ0eZ4pLdOr0slJBsqipX6xtR61cItG6A_fgkNME316OEMBQ9w/s320/ventricles+before.jpg" width="261" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Initial MRI scan of his head showing the enlarged ventricles </td></tr>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Those large V shaped areas, yeah
they shouldn’t be there. His ventricles were quite enlarged and this was why the
neurosurgeon’s office got us in quickly. Looking at this picture we know 2
things, he definitely has hydrocephalus and the pressure in his brain is
probably elevated. To what extent we didn’t know at the time.</span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">As I have talked about in the past
the solution we went with was an endoscopic third ventriculostomy or ETV
procedure. This is a surgical option that unfortunately isn’t an option for all
kids/adults with hydrocephalus. The surgeon not only has to be skilled in the
procedure, but also the patient has to have the right anatomy. Also this
procedure is typically the most successful in patients with obstructive hydrocephalus
like him.</span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">So after 3 months and a revision to
his head due to the infection these are the results.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEFNbo6EBOW8eQZoU0B9NTeUP4MpUUMYKuzvgZNKkTOk5THHiOg6mcl4sAzE9vKFncgPUg2kBiWhyphenhyphenbamLsAEkC88MuRM5jWnAcgZioGRDj7w24rjMUACCjF6DqcasNZ8YXaZT9TGYHd20/s1600/drain+path.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEFNbo6EBOW8eQZoU0B9NTeUP4MpUUMYKuzvgZNKkTOk5THHiOg6mcl4sAzE9vKFncgPUg2kBiWhyphenhyphenbamLsAEkC88MuRM5jWnAcgZioGRDj7w24rjMUACCjF6DqcasNZ8YXaZT9TGYHd20/s320/drain+path.jpg" width="284" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">See he has a hole in his head now</td></tr>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">The arrow is pointing to a tiny hole
that was made during the procedure to allow for spinal fluid to drain and
relieving some of the pressure in his brain. The white line that trails down
from it is proof that his spinal fluid is draining like the surgeon had
planned.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJFm6klfeYHD4h5R_UMkWbd1QPykr2EgHFs7DjV2vDxHTeM17i3woijm7hpr1GKveF7sjentkSuMa6Eaajc2JrSs9U7eIdn3wvH-gK3VcdYQGaNQacIGGs6-R8i2zWAjz76dUczvGgpyY/s1600/ventricles+after.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJFm6klfeYHD4h5R_UMkWbd1QPykr2EgHFs7DjV2vDxHTeM17i3woijm7hpr1GKveF7sjentkSuMa6Eaajc2JrSs9U7eIdn3wvH-gK3VcdYQGaNQacIGGs6-R8i2zWAjz76dUczvGgpyY/s320/ventricles+after.jpg" width="288" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">3 months post op and the new ventricle size.</td></tr>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">The last thing we looked at was his
overall change in ventricle size. 3 months after the initial operation the
ventricles in his brain are starting to shrink. There is no guarantee that they
will ever go back to a normal size, but the hope is over the next year they
will continue to shrink little by little. We also know that what will be
considered full recovery will take a year.</span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Another thing to note is due to the
placement of the cyst our surgeon told us again that it is not in the plans at
this point to remove it. The cyst is in a place very hard to get to and as long
as it doesn’t get any bigger or change it will not be touched. The ETV allows
for it to stay there while still allowing spinal fluid to drain back into his
circulatory system.</span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">So now in the mean time we go back
to being as normal as possible. Granted some days that’s harder than others. I
am beyond paranoid with him. Every time he acts sleepy at a time he normally
isn’t, every time it looks like he is getting a headache my mind starts racing.
<span style="mso-spacerun: yes;"> </span>He always seems to come out of these and
my worrying is for nothing. Until he completely learns to tell us when
something is off or hurting then both W and I will continue to be paranoid.</span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">He is at least back in gymnastics
and will be starting a full day kindergarten program in the fall. Going back to
the gym is a big deal for him and he is starting to pick up right where he left
off. He is still the same goofy kid that speaks in lines from his favorite shows
and is socially awkward, but its getting there. He is answering questions
appropriately in class though which is a step forward.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP4OVGUaUkmqJ02RitMJn9mtn4GOqmwzedM9j4v0FNTD6fStimrkt7i1AjekMuQsw_gSQlvOMW3kZBKlLvJJQfX-xYwVM6c_A_pYEEwfrX5armyvRPl3gctX_QGRhanE3bJdhWUcr-hYI/s1600/2012-07-25_18-20-20_886.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP4OVGUaUkmqJ02RitMJn9mtn4GOqmwzedM9j4v0FNTD6fStimrkt7i1AjekMuQsw_gSQlvOMW3kZBKlLvJJQfX-xYwVM6c_A_pYEEwfrX5armyvRPl3gctX_QGRhanE3bJdhWUcr-hYI/s320/2012-07-25_18-20-20_886.jpg" width="180" /></a><span style="font-family: "Times New Roman","serif"; font-size: 12pt;"> </span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">At home he’s starting to engage in
more imaginary play by building what he calls “American Ninja Warrior” courses
out of Lego duplo blocks. He is even starting to get better fine motor skills
with writing practice. This past week when we were going to practice he sat
down and wrote his name with no help. Its still really rough, but at least he
did it and I could tell what he was writing.</span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">So that’s about all. I hope this
post sheds some light on exactly what his condition looks like via MRI. To me
its pretty interesting and while its been a scary and trying time over the last
few months we are now in the management and recovery phase which we are very
happy about. If anyone has questions please let me know and I will do my best
to answer them.</span></div>
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<br /></div>Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com1tag:blogger.com,1999:blog-201954696614511095.post-628899592113829792012-07-22T07:25:00.002-07:002012-07-22T07:26:25.472-07:00The neurosurgery update<span style="color: #222222; font-family: arial, sans-serif;">So here are the details from the appointment this week. </span><br />
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<span style="color: #222222; font-family: arial, sans-serif;">First we had to go through having the MRI and getting Alvin sedated. It went a little better this time but it was still tough. The doctors and nurse in the radiology department assured us that as he gets older it does get better and sedation may not even be needed. He came out very sleepy again but luckily this time reacted much better than he has in the past and came out of the anesthesia with no nausea.</span><br />
<span style="background-color: white; color: #222222; font-family: arial, sans-serif;"><br /></span><br />
<span style="background-color: white; color: #222222; font-family: arial, sans-serif;">Once he was good and woken up we went upstair to meet with Dr. Lee his neurosurgeon. First asked about his progress so far. His overall motor skills have slowly and steadily improved. His speech is getting better and even though he is a walking book (repeating everything he hears, reads watches) he is at least talking. His surgeon pulled up both MRI scans and looked at them side by side. The scans showed that the hole placed in his 3rd ventricle is still open and working well. The cyst is still there and will not be treated. The thought is because it is in such a bad place that unless it changes in some way it will likely never be treated directly.The cyst itself is what is directly causing Alvin to have obstructive hydrocephalus. The scans also showed that his overall ventricle size has decreased. It may never go down to its normal size but as long as the drainage path stays open he should be fine. His next MRI will be scheduled one year out.</span><br />
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We were told he could go back to normal activities but to be cautious. We still will have to watch him like a hawk because of his inability to effectively communicate pain and overall discomfort.</div>
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So right now we have been cleared to let him go back to gymnastics. He is going into the 5-6 year old class (Good Friends) and after a few weeks if for any reason we get the sense that its too much or he is having issues with it I will drop him down to the 4-5 year old class (Giggle Worms). He has also been cleared to go back to school in September with no restrictions which is huge since he will be in all day kindergarten.<br />
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Things are finally getting better and while we are of course happy that things are stable for now I don't think that the anxiety level has completely gone down. The fear of what could go wrong will be with us for years to come but we know that we and the staff are doing everything that can be done to be sure he lives as normal life as possible.</div>
<br class="Apple-interchange-newline" />Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com1tag:blogger.com,1999:blog-201954696614511095.post-45888475992311214792012-07-13T20:33:00.003-07:002012-07-13T20:33:24.885-07:00Update from the neurologistSo just a quick update. We had our followup appointment with the neurology department of Seattle Children's Hospital this week. I thought it would be uneventful and turns out I was right. We met with the neurologist and went over all that had happened in the past few months. In the end Alvin hasn't had a single seizure since the initial surgery. The neurologist now believe that his seizures were caused by spikes in pressure in his ventricles that were putting pressure on the cyst. He believe that we are now done with his practice unless something else happens when we will be referred back.<br />
<br />
So overall we are now officially done with the neurology department. Now the next step is Tuesday when we go back for Alvin to have a MRI and CT scan of his brain to be sure things are healing internally correctly and that there is no evidence of excess fluid collection in his ventricles. Once the scans are done we will immediately meet with the surgeon to go over the results and what our next steps are with him and the condition.Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-11011333472393029912012-06-14T21:04:00.000-07:002012-06-14T21:05:48.059-07:00The point of understandingThere comes a point where we knew that Alvin would start to understand that he was different. Before the hydrocephalus surgeries his differences were harder to point out. He spoke a little differently and had different social interactions. His motor skills were choppy but for the most part it was hard for others, especially kids his age to tell what was going on. Most kids just thought he was funny or odd, but it never was really a factor.<br />
<br />
Lately all that has changed. It occured to me during this hospital stay that Alvin is starting to understand that he is different and that the hospital is now going to be part of his life.<br />
<br />
This all started when we were in the playroom. There was a doctor's table with commonly used items such as a thermometer, pulse oxygen monitor, and stethoscope. While we were in the play room Alvin had a lot of fun showing me how these were all used telling me things about them. While I was impressed with his understanding it was also hard to take.<br />
<br />
During the stay last week, from the first clinic visit all the way through discharge Alvin showed me that he does understand what is going on. He knows something is wrong with his head. He knows that the doctors are there to help but they do things that hurt sometimes and it can be scary.<br />
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When we got home I basically forgot about some of it until Sunday when we went to a local playground to get some much needed outside time.During our time there I noticed something very specific. When Alvin was playing with the other kids and his baseball cap was on covering his incision he was treated as normal as ever. He at one point took his hat off and went back to playing. The same kids that were just playing with him saw his head and made comments and ran away. These exact same kids started treating him like there was something wrong with him. Alvin noticed this and once again did something that I admire. He calmly came to me and said he wanted to go home so I got Elliot and we headed home.<br />
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Once again that was a kick in the gut. I see him deal with it so well, but later the emotional meltdown came out. He asked to be held and carried. He asked me to not let go.<br />
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Alvin knows that he is different now not just because of his mannerisms but because of the large "C' on his head. He knows at home he is treated just like Elliot, but for some reason the other kids don't see him the same way. They see him as odd or gross and avoid him which is so different because at home Elliot seeks him out and could care less that he acts weird or has stuff on his head.<br />
<br />
We are struggling with this as a whole. So far the only thing we can do right now is tell him that some kids are just mean and don't understand. His family understands him and right now that's all that matters. Right now all we can do is just work through it with him. He really is handling it all very well for his age and we have been so proud of him. He is starting to better understand his conditions though which at times can be heartbreaking. We had hoped he could stay blissfully less aware for a while longer but the day has come and now all we can do is support him through it.Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-11708747788540660002012-06-07T22:00:00.002-07:002012-06-07T22:00:24.488-07:00The infection updateSo the last time I did a full update was Tuesday night after surgery. Wednesday morning we had a visit from the surgical team and his incision looked good. It was still red and swollen which was to be expected but otherwise fine. He was still lethargic and had no want to do with taking any sips of a clear liquid. He basica;;y slept most of the morning until W and Elliot got there. I then took Elliot to go pick up my laptop charger at work and get us lunch while he stayed with Alvin. When I got back we had lunch and even though Alvin asked for a bite, when you actually offered him a drink he said no.<br />
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We found out that due to the large amount of antibiotics and fluids he was on that they were decreasing his appetite and keeping him pretty lethargic.<br />
<br />
Then things got interesting. We met with a doctor from the infectious disease. They said nothing had started growing in the cultures but they just weren't sure it was even bacteria.So after some more questions I showed him the pictures of what it had looked like the days before we brought him into the clinic and then in the clinic when they started cleaning it off. He was actually pretty amazed that I took them and asked for them to be emailed to him so he could study what things looked like before they cleaned it out in the OR. Later that night the team from Children's as well as the doctor we spoke with from UW came back to go over things further. This is where things got interesting. They told us they now suspected that the infection was not viral but in fact fungal! They were going to talk to the neurosurgeon to get a better idea of what they saw in the operating room. The surgery team (yes now it is more than just his surgeon and her resident) stopped by later and discuss what they saw. They weren't convinced it was bacteria but said it was ultimately up to the infectious disease team to decide the final treatment plan for the antibiotics.<br />
<br />
Luckily that night he slept well and on Thursday morning was starting to feel a little better. The nursing staff suggested turning down his IV and seeing if that would help him want to eat and drink a little. Well it certainly worked and before long he was eating jello and starting to drink very slowly. The surgeon even came in during rounds and said they could just disconnet the IV entirely since he hadn't thrown up again. The rest of the day he slowly started eating and drinking and driving us nuts as his energy returned.<br />
<br />
Later that night he was feeling so good we even made a trip to the larger playroom to help release some of his energy. By the time we spent about an hour and a half there we also met with his infectious disease doctor and his surgeon one more time. His surgeon wants him to go home tomorrow and thinks his head looks really good. She does want the nursing staff or a nurse practicioner to give it a good saline wash just to get all the dried blood off and one last good cleaning. His infectious disease doctor believes that the infection was actually a combination of a fungal and bacterial infection. Luckily it was all superficial so just a course of oral antibiotics is probably all that we will have to do at home. Well that and a followup incision check in 2 weeks, but that was to be expected.<br />
<br />
As long as the infectious disease stuff comes back fine we are out of here tomorrow and I'm not sure who is happier, us or Alvin! <br />
<br />
In some ways its like starting all over. After 7 weeks we are going to be sent home with the same care instructions and he will have the same physical restrictions. While it is really frustrating at least we have it under control now. We now know that he has an issue with the super glue they use. He no longer has any hardware in his head and it will not be replaced. He is as back to normal as he was 7 weeks ago and now maybe we can avoid any more emergency trips to the hospital for at least a few more months!!<br />
<br />Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-77622384294408732442012-06-05T22:33:00.000-07:002012-06-05T22:34:19.272-07:00Back in the hopitalSo first off please forgive me if this all seems like a mess. Once again we have had another urgent operation.This time it was for an infection that was starting to set into his head.<br />
<br />
This past weekend we noticed that he had a funky smell coming from his head when you got up really close to it. It was seeping a little blood but Alvin had been acting fine and not running a fever or seeming otherwise painful so we didn't worry about it. We just did our best to keep it clean and dry and things seemed fine.<br />
<br />
I decided to call the neurosurgery clinic on Monday just to be sure but continued to think that I was just paranoid. I received no call back Monday and figured it was because my personal cell phone doesn't get reception in the office I called back Tuesday morning and left my work cell phone number. The nurse practitioner called me back and said they wanted to go ahead and see him at 3pm today just to be sure we were ok.<br />
<br />
I left work around 1:30 saying that things were fine and I would be back tomorrow.<br />
<br />
When I got home W told me that the smell had gotten much worse and that part of his scab had turned green. So off to the hospital we went.<br />
<br />
The nurse practitioner took a look at it and cleaned it the best as well as she could and remove some of the caked on glue but soon realized she needed a surgeon to look at him.<br />
<br />
The surgeon came in and gave us 2 options. One was to use a topical antibiotic ointment and oral antibiotics and see if that worked. The other option was to take him to the OR and clean it out and do a full debridement of the area. I told him just to do what was best. He took a couple of pictures and went to show the attending surgeon Dr. Lee who also did his ETV surgery. She came in and said she just thought it was best he go to the OR and get this taken care of once and for all.<br />
<br />
Calls then went out to family and W arrived with Elliot. We got him back to the OR and went to grab a bite to eat. After about 45 min we were paged to go wait for him in another room and were told he was waking up. W and Elliot then had to leave and I went back to stay with him.<br />
<br />
Waking up was really hard again. He was in a lot of pain and really disoriented. Once the pain was under control we moved to the surgical unit where he will stay.<br />
<br />
From what his surgeon told us it smelled worse than it was. He will be kept in the hospital for a few days while they culture what was found and give him heavy doses of antibiotics. She is confident this is just a minor setback for him.<br />
<br />
So now we wait. I'll post more as all this continues but right now we are doing well. Once we know more about what is going on I'll send out another update but for the moment we are once again glad to have Seattle Children's Hospital close by and a neurosurgical team that is so good with him.Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com0tag:blogger.com,1999:blog-201954696614511095.post-86626548358644737752012-05-16T12:38:00.000-07:002012-05-16T12:38:11.264-07:00Hydrocephalus and ETV. When reality sets in.<!--[if gte mso 9]><xml>
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One of the things you go through after the diagnosis of
autism is a reality check. It’s when reality sets in and you face what your
child’s new future is. Everything with your child seems uncertain and all of a
sudden and you have to go back and understand that things have changed. The
things you thought your child would do may no longer seem attainable. So you
sit there and make new plans. You start taking things more day by day and learn
what a new normal for you and your family is and will be.</div>
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<br /></div>
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To paraphrase a friend of mine, it’s hard to remember that
during this time your child is still the same kid you have always known. It
takes some time to look at them and remember they are not just their diagnosis.
But slowly things get back to what the new normal is and one day you just can’t
imagine a time where it wasn’t like this.</div>
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<br /></div>
<div class="MsoNormal">
This same thing has recently happened to us with dealing
with Alvin’s diagnosis of hydrocephalus. The diagnosis and surgery hit us so
far out of left field that honestly it’s just taken a longer time to process
what has happened and how it will affect us moving forward. The more I have
told his story the past few weeks the more things have hit me. Both W and I are
still working to really come to grips with what is currently going on with him
and what his future will entail with the diagnosis.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am an engineer and do my share of analysis and in this
case I can analyze all day and never really be ok at this point. I’m ok in
front of Alvin and E, but W knows me. I always have the facts and numbers in my
head. </div>
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The general numbers for the procedure Alvin had (an endoscopic
third ventriculostomy or ETV) is a success rate of approximately 80%. So in the
first year 80% of the patients that have had this procedure the result is that
the drainage of cerebral spinal fluid adequately controlled. The second year
success rate is about 78% and the known time that the procedure is most likely
to fail is within the first three to six months after the operation. The
reasons behind the failure can vary, but the most common is that the hole in
the third ventricle either partially or fully grows up and spinal fluid can no
longer flow through the path</div>
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We know that no matter what, his condition will need
constant monitoring by his neurosurgeon and the staff at Seattle Children’s
Hospital. We know that for him, contact sports like hockey and football are out
for good for the rest of his life. The chance of something happening and his
catheter being damaged are just too great with both of these sports. Soccer and
t-ball/baseball and gymnastics are all possibilities still but will have to wait
until after his next MRI and meeting with the neurosurgeon in July to know for
sure. Until this appointment we also have to keep a very careful eye on his
incision. We have to constantly monitor it for any separation of the skin,
blood or leaking of fluid. If anything comes up its back to the clinic or
Seattle Children’s Hospital neurosurgery clinic or ER we go. </div>
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So what is Alvin’s overall prognosis? For all the
information he has he should be fine. He will grow up learning more and more
about his condition and how to manage it. We are working on getting him a bracelet
as well to identify that he has hydrocephalus in case something happens and he
can’t speak. The condition will never completely go away though. The best thing
we can hope for is that for the rest of his life he stays in a constant state
of remission where the fluid levels remain normal and all drain paths are
working correctly. Could he have more surgeries? The answer is yes. Dealing
with this condition means never really knowing what is going to happen. So
future surgeries to repair his catheter or do a revision to the procedure are
always a possibility for the rest of his life.</div>
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We know that for the next few months at least we are taking
things one day at a time. If at ANY point we notice things that are troubling
like loss of verbal skills (goes from talking one day to not being able to talk
the next) or suddenly seems lethargic and responds less verbally or to verbal
requests we have to get him back to the hospital immediately. These are all
signs that something may have gone wrong and he needs immediate attention by
the neurosurgery team.</div>
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Last week I had a conversation with one of the nurse
practitioners in the neurosurgery department after Alvin gave us a scare the
night before. She said Alvin was one of the kiddos that scared them. His
hydrocephalus was diagnosed much later than some and if his fluid pathway is
blocked and the pressure starts to build up again we won’t know what it is
going to look like. For him it could present in a number of ways so anytime we
have a concern we should keep an extra close eye on him and possibly get him to
the ER at Seattle Children’s so that he can be evaluated and effectively
treated by the neurosurgery team.</div>
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The worst part of all of this for at least the next few
months we cannot continue with many of the activities where he is around groups
of normal 4 to 5 year olds. Things like playgrounds are allowed only if there
is no equipment he can fall off of. Gymnastics and socializing in a structured
environment with normal kids is all on hold due to the fall hazards and the
possibility of his head splitting open if he rolls on it too much. All we can
do is keep home life the same and treat him as much as possible like any other
kid his age. We can still go on outings and do all of the other things that we
normally do but we have to be extra careful of his actions for the next few
months. </div>
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So this is what we are dealing with. It’s an adjustment for
all of us and is definitely taking time to get used to. Here soon though things
will begin to take on a new normal for us and we will gradually learn to accept
the new challenges the hydrocephalus diagnosis has presented to Alvin and all
of us.</div>Vhttp://www.blogger.com/profile/06882892812988500526noreply@blogger.com1