tag:blogger.com,1999:blog-51696516928201275702024-03-13T00:35:38.600-04:00Finding Finnley's VoiceThis website is intended to help the parents of children with developmental delays and medical concerns in the Tampa Bay area. The goal is to compile resources available in the Tampa Bay area for children with special needs and/or developmental delays to assist parents in being advocates and "voices" for their children.bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.comBlogger61125tag:blogger.com,1999:blog-5169651692820127570.post-85802510840081097262014-04-10T11:36:00.000-04:002014-04-10T11:36:17.065-04:00Finn, The Sweet Boy"But Finn is such a sweet boy." I don't know how many times I have heard that one. It's true. Finn is the sweetest boy I know. He loves other kids and tries so hard to socialize with them. He freely gives kisses and hugs and is quick to hold hands with just about any one. Sweet, indeed. There is something endearing about his innocence and the pure joy he has when doing simple things. But I'm over the phrase.<br />
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We're in the process of developmental and IQ testing. We need to figure out where to place him for Kindergarten and we are trying to get him additional resources such as more therapy and specialized learning tools.<br />
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And for a moment, I will digress and talk about what I believe is an ineffective way to give an evaluation or test...<br />
The IQ testing was a disaster. We paid a hefty amount to have a neuro psychologist perform the testing. By the time the appointment came around, Finn was in really bad shape. He was having partial complex seizures that were impacting his daily life and the medication was not yet controlling them. During the testing, Finn threw up and was obviously not feeling well. Yet, the neuro psychologist wanted to keep going on. Looking back, I should have just stopped the test.<br />
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In addition to the seizures and Finn being ill, the neuro psychologist had him sitting in an uncomfortable chair on my lap for the testing. I couldn't get over it. Furthermore, she didn't take any time to get to know him before she started the testing. Anyone reading this that gives evaluations, please think about the individual you are giving the test to. Why on earth would it be a good idea to have him take the test sitting on my lap on an adult chair and doing it across a large desk where you have plenty of distractions (pencils, paper, computer, etc). Again, I should have put a stop to it<br />
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Now back to my point...<br />
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So, we got his IQ result and yes, low, as we expected, "but he is so sweet." The neuro psych advised us we should start looking into adult living facilities for him even though he is only 5. You need to start planning for his future. Why didn't she just literally slap me in the face; it may have stung less.<br />
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Finn's school and private therapists are also doing evaluations. All of them coming back below the 5th percentile. We get the same response every time, "the scores came in at ___ percentile, but he is so sweet." <br />
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I'm trying to take each of these with a grain of salt. I'm doing my best to hold it together. I want the best for my child just like any decent parent. I keep holding on to this dream that I will be able to fix his problems...but what if I can't? <br />
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And then I consider the obvious...Finn <i>is</i> sweet. He has a light that shines from within that not everyone has. Everything Finn does is for the pure joy of doing it. He loves unconditionally. What matters is that Finn is an amazing person and I am lucky enough to be his mom. I will take <i>sweet</i> any day.bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com1tag:blogger.com,1999:blog-5169651692820127570.post-17340110801764913472013-08-01T20:33:00.000-04:002013-08-01T20:33:48.572-04:00Kiddy Up!I've received more than a few complaints for not updating Finn's blog. So....<br />
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This summer has been great, but busy. With both kids home, I have hardly a moment to catch my breath. Finn has something going on every day of the week...therapy, allergy shots, swim lessons, and doctor apts. Both kids have become awesome swimmers and grateful for Florida living with a pool in our backyard we use everyday. I'm trying to take advantage of all the time I have with them this summer as I will return to work later this month.<br />
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We had a bit of a health scare this summer with Finn's heart, but he got discharged from cardiology (again) last month. His language continues to develop and he sometimes seems to be speaking in long paragraphs, but we may only catch a few words. His vocabulary is increasing, he is asking where and what question,s and his articulation is improving. <br />
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But...what I am most excited about is how he is responding to equine therapy. Finn started horse therapy at the beginning of July going once a week for an hour at a time. He went to a wee- long horse camp at the end of July and cried each day upon seeing me arrive to pick him up in the afternoons. There is no question he had a blast as he repeatedly said "turn around" and "horsey again" the whole way home.<br />
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Horse therapy works like this: a therapist works with Finn to groom the horse. The brushes are all different sizes, textures, and colors and he is learning about direction (brush left to right and son on) and body parts as he bonds with the horse. After Finn is helped onto the horse, they may stay stationary and paint the horse...yes actually paint the horse. Or Finn may tell the horse to "walk on" as they start their way through the ranch. <br />
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While Finn is on the horse, he plays catch, basketball, stretches and reaches to work his core and balance. He works on numbers, colors, and letters. He searched for eggs the other day that were strategically placed in low lying tree branches. <br />
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Kiddy Up Ranch follows the horseboy method. In additon, they incorporate Finn's individualized education plan from school and other speech therapy plans, etc into Finn's horse therapy lesson plans. I am so glad we found this place. It's not like many others that say they have horse therapy and charge you an insane amount to walk in a circle for 15 minutes. They cost is only $30 for an hour session and the therapists and<br />
volunteers love these kids like their own.<br />
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Also at the ranch is a small petting area with Finn's favorite character, Mickey the donkey. Mickey is just Finnley's size and I they formed a bond rather quickly. Finnley likes to give hugs and Mickey likes to recive them. Finn likes to feed Mickey and Mickey likes to eat. Finnley likes to open the gate and Mickey likes to escape...a partnership for the ages.<br />
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The first session, Finn did not want to put on his helmet and was weary to get on the horse. But now, Finn walks into the stable like he owns the place and pets the horses and even kisses them without hesitation. It is amazing to see his confidence increase in such a short period of time. There are some people and things that I knew instantly would have a profound positive effect on Finn and equine therapy is one of them. <br />
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P.S. If anyone has any good ideas for keeping glasses on a toddler who defiantly doesn't not want to wear them, please e-mail me!!!<br />
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<br />bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-70796777621391754102013-01-25T16:04:00.003-05:002013-01-25T16:04:37.167-05:00ChoicesThis morning, at a somewhat reasonable waking hour, Finn was standing at the side of my bed, grabbed my hand, and said, "Hi Mommy. I love you." Does it get any sweeter than this? First time, Finn said "I love you" spontaneously. I even think he knew what he was saying. My heart is still melting. Finn proceeded to climb in bed with me and snuggled while we played games on his Nabi. <br />
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I love our mornings together, just Finn and me. We don't get much alone time, so I cherish these week-day mornings, even when they start at an unreasonable waking hour.<br />
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It's hard to believe, a year and a half ago, I actually struggled with the decision of whether to stay at home or continue my career.
All I can say is I made the right choice. I can make my list of pros and cons and sure, staying at home has its ups and downs, but at the end of the day, all that matters is I get this time with the kids and they get the time with me. I'm going to cherish each and every moment. bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com2tag:blogger.com,1999:blog-5169651692820127570.post-2888143416999484172013-01-16T15:16:00.000-05:002013-01-16T15:16:00.942-05:00Finn Post-OpIt's been just over two weeks since Finn's surgery and as far as we can tell, it was successful. The doctor repaired Finn's ear drum by using cartilage from behind Finn's ear, repaired the hammer bone in the ear, put in new tubes (yes, 5th set), and cleaned out his sinuses. <br />
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All in all, the surgery went well. It was a bit longer than anticipated and the nurse scared Dan and I half to death during Finn's operation. Dan and I were waiting in the waiting room when the phone rain and it was for us - it was about 15 minutes after they took Finn back. My heart jumped out of my chest as I answered and the nurse just wanted to let us know that he was asleep and everything was going fine. Sigh!<br />
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And dear Tampa General, those cribs you make the kids under age of 5 stay in are so instutionally scary. Can you please think of something else to make them a bit more cheerful. At least we "turned" Finn's crib into a train. <br />
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We went home the same day and Finn kept the large ear covering that was "glued" to his forehead and around his head on for two days. I was amazed he didn't touch it. By the way, Finn on pain killers = funny.<br />
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Finn has a scar that runs along the outside of his ear, but frankly, you can hardly notice it. It's quite amazing what doctors can do. <br />
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We were very grateful that my parents were able to come in from out of town and stay with us for a few days. Camila got some great time with her grandparents while we focused on Finn. <br />
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Since the surgery, we have really only had one bump in the road and it was completely unrelated to the surgery. Finn had a pretty bad allergic reaction to something last week. He woke up with two swollen eyes, two swollen ears, and hives all over his body. His knees were so swollen from hives he could hardly walk. So as Dan and I fed him Benadryl and discussed whether or not to take him to the emergency room since it was 5am and no other place was open (Benadryl not working at this point). I grabbed the epi-pen and started to get dressed to take him to the hospital and then realized, our closest hospital is no longer in network. Thank you UHC and Baycare. So, we call the on-call nurse and decide to wait to see his pediatrician at 8 am when the doc office opened since his breathing was still normal. Some steroids and lots of benadryl...three days later all of the hives were gone.<br />
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I know parents with children that have multiple medical needs know the feeling of always being on edge. It is seriously hard to relax when you know at any moment you may have to rush your child to the ER. These moments have dwindled for us, but this recent allergy scare brought back a lot of memories.<br />
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We are officially back to our normal routine as of today! I want to thank everyone for thinking of Finn on his day of surgery and through the recovery. It means a lot to us to have so much love.<br />
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<br />bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-29413971863876957772012-12-30T09:55:00.002-05:002012-12-30T09:55:54.108-05:00A New Ear Drum for ChristmasTomorrow, Finn is getting a new ear drum. I am both excited about what this could mean for his right ear and a nervous wreck.<br />
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We have to be at the hospital at 5:15am which means we will have to get Finn up around 4am to start pre-operating procedures including a bath in a prescription antibacterial soap.<br />
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Essentially, they are going to take cartilage from behind Finn's ear and make a new ear drum, remove any more tumor(s) that are in the ear, and repair the hearing bones. All in all, the surgery will take about 1 1/2 to 2 hours. We expect to leave the hospital the same day and the first stage recovery will take about 2 weeks and then full recovery in about 4 months. The hardest part for Finn will probably be the no swimming for four months, not even with an ear plug. <br />
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We knew this surgery was coming, but we thought it was going to happen in another couple of years when he at least had one good ear, but the chance of him having another tumor is a risk the doctor doesn't want to take and therefore the surgery is happening tomorrow. <br />
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Finn has been put to sleep at least ten times now and as a mother it doesn't get any easier. Yesterday, I tried to explain in the simplest terms to Finn that he is going to go to sleep and wake up with a big bandage over his ear. The doctors are going to fix his ear drum and it may be a little scary. He smiled at me the entire time and said "yeah" each time I paused. I know he doesn't quite understand and that makes it a little more difficult as a parent. <br />
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We do feel very lucky that most of Finn's major issues have resolved on their own or have not yet required surgery like his heart defects and brain abnormalities. <br />
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Please keep Finn in your thoughts and prayers that he has a successful surgery, is comfortable and a speedy recovery. bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-69698925600833334862012-12-19T13:19:00.003-05:002012-12-19T13:19:56.190-05:00RedI don't know exactly what is going on with my little man's brain, but it is working hard and in places it most likely never worked. Every day, his is doing something new and doing something new every day is new. I know this doesn't sound extraordinary to most parents of 4 year old boys, but it is to those who know Finnley. The fact he is talking using more then just a couple of words is in itself amazing. <br />
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Finnley used his first adjective this weekend. He said, "I want red game." Finn's communication is becoming more and more independent. At school he got his first check (well, actually it said "some" but close to a check) in the box by "communicated independently with adults." What progress!!! <br />
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It is crazy to think that Finn didn't start walking until nearly 2 1/2. At this time last year, he was only saying 10-20 words and they were mostly prompted. We had to teach Finn things that normally come easy to other children...to point, to chew, to swallow, to roll over, to reach, to put in, to keep his hands open, and the list goes on. These things did not come easily. It was with every waking hour of working with Finn to make these strides and he hasn't stopped making them. <br />
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We continue to spend our waking hours working with Finn on things most four year old's know. Colors, the alphabet, eating properly with utensils, potty training and so on. But, Finn can count to ten, he can ride his tricycle with no hands, he can brush his teeth by himself, and tickle his sister. We are lucky that Finn can learn, that he wants to learn, and that he is learning. It takes a ton of practice, patience, and sometimes tears to get there, but we do it together.<br />
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In times you really want to throw in the towel and say your child is just not getting it, don't stop. Think of the word "red." I have said the word "red" a million and a half times this year, but that millionth and a half time plus one, Finn said it on his own, independently, and correctly. <br />
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<br />bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com1tag:blogger.com,1999:blog-5169651692820127570.post-67517272699298560912012-11-16T14:22:00.001-05:002012-11-16T14:22:51.670-05:00Neurofeedback Update - Brain Map 3 Results Are In!!!Holy moly (Finn's favorite saying - he laughs hysterically every time I say this)! <br />
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Finn's brain has normalized!!! I honestly don't even know what to say other than wow!!!!<br />
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After 21 neurofeedback and LENS treatments, Finn no longer has anything getting in the way of how his neurons communicate in his brain. I don't even have words to describe what I am feeling. <br />
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We have seen so many changes in Finn over the last couple of months. He has gone from age 1 in development to at least age 2 and maybe 3 or 4 in some areas. He is playing with his toys differently, he is communicating using short sentences, he is saying new words, singing songs and saying the Pledge. He even rode his trike with no hands and told me he was "balancing." He is interacting with his peers at school and has started to show more confidence there.<br />
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The behavior changes I have seen in Finn lately (the terrible twos) are caused by his brain basically going crazy right now. He has neurons firing that were never firing. He has parts of his brain that had no activity that have lots of activity and he doesn't know what to do with it. <br />
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The doctor explained it like we just uncorked a champagne bottle. It takes some time for the fizz to run out. Once the fizz stops, we should see some improvements in his behavior, attention, etc. <br />
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The hard part for me - the razor's edge of being a parent. How to be loving yet firm to help set boundaries. I'm a softy, I will admit it. The kids laugh at my "stern mom" face. I didn't know if Finn ever understood cause and effect and therefore let him pretty much get away with anything, but now I need to start being a little tougher. Any suggestions would help! <br />
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We will continue to do another 10 treatments. Once those treatments are over, Finn will have another brain map done and we hope to see some of the areas of his brain settling down. It could be that Finn will only need 30 treatments. This is amazing especially given Finn's age. Age 6 is typically the youngest they do so the fact that Finn is getting so much benefit out of the neurofeedback therapy is incredible. <br />
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More to come on this topic!<br />
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<br />bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-42974852035426081852012-11-09T14:20:00.004-05:002012-11-13T15:12:37.666-05:00ProgressIt has been a while since my last update on Finn and I'm the only one to blame! Finding time, even just a few minutes, during the day to maintain a blog is challenging when it is not my number one priority.<br />
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Finn is doing great! He is healthy at the moment and I don't know if he has ever looked better. He has color in his skin and only small circles under his eyes. We just got his latest allergy test in and still allergic to peanuts and milk, but nothing else foodwise! This is wonderful news - being able to add soy and wheat to his diet will give us many more options on what to feed the little guy. We still have at least one or two surgeries that he will need to have before too long, but try not to think about that. His right eye is deviating a little bit more so we may need to patch at some point, but latest brain MRI came back unchanged (this is good - cyst and hydrocephalus have not grown (or shrunk)). His bloodwork is coming back normal except for his usual immunology issues. So, we are thankful for his health!<br />
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Developmentally, Finn amazes us every day. Seriously. There is a moment in every day where I hear something or see something I am not expecting. A few examples (ok maybe more than a few):<br />
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Finn knows the "Pledge." He doesn't know every word, but the kids got flags from a veteran the other day and Finn put his hand over his chest and tried to repeat with me as I said it.<br />
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Camila was acting like her usual self in a long car-ride from Atlanta to Tampa and Finn called her "crazy." This was a very appropriate comment. <br />
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Yesterday, Finn told me he wanted "that one next." <br />
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I do have to start watching what I say. I said "OMG" the other day and put my head in my hands for a second. Finn has repeated it about 15 times since then at the appropriate moments. <i> </i>I recall a friend's story where her husband was driving her daughter to school. Her daughter is speech delayed and had problems with the "f" sound. Her husband said the "f" word and her daughter repeated pretty clearly. Yikes!<br />
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Finn is riding his big boy bike with training wheels all over the place and exudes confidence when he does it. <br />
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Finn is consistently getting left and right feet correct. He is label colors better, but not 100% of the time yet. He is counting objects all by himself.<br />
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He is playing differently. Finn's idea of play in the past has been more of repeating actions. Watching the train move around the track and horsing around with his family. He never got out his cars and played with them. He is totally playing with his cars now like a little boy. He drives them all over the house, lines them up, counts them, studies them, causes accidents and laughs! I'm loving it!<br />
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He is requesting that I take his picture every day. I am also loving this. He will grab my phone and say "picture," go stand up straight and say "cheese." I mean what a sweetheart. <br />
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Finn is coming out of his shell more and more at school and attending better. He is focused more and following directions without having to be constantly redirected. <br />
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With respect to neuro-feedback, we are still going twice a week. He just had a new map done this week and we meet with the doctor to obtain results. We absolutely think he is benefiting from the therapy, but it is a slow process. I wish there was something we could give him to make him talk over night, but the reality is he has to go through the developmental stages that he missed when he was one and two.<br />
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With all of the great developmental progress Finn is making, there is some of the "bad" that is occurring too. We have entered the terrible twos. He is showing independence and testing the limits. He is picking out what clothes he wants to wear and gets angry when I ask him to select something else if what he chose is not appropriate for the occassion or weather. He is refusing to eat some of the things I make. As much as it is a struggle for me, it is good that he is going through this stage.<br />
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Everyone used to comment on how well-behaved Finn was at doctor's offices, in the grocery store, etc. Finn was always complacent. Complacent at 2 is not always good. Kids need to go through stages to progress to other ones. I just wish he was 25 lbs going through this stage instead of 38lbs!<br />
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All in all, Finn is doing amazing. He is an amazing little boy and we are so lucky he is doing so well. I will continue to update you on his progress!<br />
<br />bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-91822200209412856662012-09-24T12:16:00.001-04:002012-09-24T12:16:42.609-04:00Pasco County Young Althletes Program Special Olympics and the Young Athletes program for Pasco county started last week. This program is for children 2-7 - both special needs and "typical." Finn and Camila had so much fun doing last spring. The program runs for about 2 months, is free and you don't have to feel obligated to go every week.<br />
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The kids work on basic skills such as kicking, throwing, catching, jumping, etc. The ladies that organize it are wonderful. <br />
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Please consider attending even if your child is not "special needs." It is a great way for typical children to learn about volunteering and they will have a blast too. There was such a great mix of kids last time around.<br />
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Its at Seven Springs Middle School on Wednesday evenings - 5:30 - 6:15. Hope to see you there!bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-70114267303391987222012-09-12T19:38:00.000-04:002012-09-12T19:38:26.946-04:00Angel Tommy<br />
I can't say I know Luan well. I've never even talked to her in person. I met Luan on the Chromosome 9 support group. I know she lives in England. I know she just went through something that no mother ever wants to go through. <br />
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Luan first joined the support group when she found out the baby she was carrying had Trisomy 9 (like Finn). The doctors and nurses were encouraging her to abort the baby without actually saying "abort the baby." Luan did not abort the baby and remained positive while getting attitude from doctors. She gave her baby a safe, warm place to develop. Luan frequently posted updates on the support group message board. All of the moms of children like hers from across the globe gave her unconditional support. They shared postive messages about how their own children have overcome obstacles. I think we all felt we were with her on her journey - I know I did.<br />
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On Monday, Luan gave birth to Tommy, a little boy that looked so much like Finn, and shortly after, he passed on. We all understood the odds that the doctors gave Luan for the baby's survival, but we all hoped they were wrong. Doctors have been wrong so many times with Finn that I didn't even consider the possibility that they would be right in Luan and Tommy's case. <br />
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Luan is an amazing mom. She gave birth to a beautiful boy that forever changed her life and all of ours on the support group website.<br />
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Thank you, Luan for joining the support group. I hope you continue to keep in touch with us and know that many people will always remember you and Tommy. bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-88824749021966326822012-09-05T15:25:00.000-04:002012-09-05T15:25:20.237-04:00Feeling left out...I wonder what goes through Finn's head all of the time. He cannot tell me about his day. He cannot tell me what he wants to do tomorrow. He cannot tell us if he had a bad dream or if his stomach hurts. Finn is smart enough to know that he is different and I wonder if he feels left out - even at home with just his sister and parents. He cannot run around quite like she does. He does not recognize and point to all of the shapes on the "shape"poster like she does. BUT he tries so hard. Every once in awhile I catch a look in his eyes that says it all. <br />
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Its heart breaking, but this isn't the left out feeling I'm talking about. I'm talking about the one that Dan and I have. The feeling that we are left out of what is going on in Finn's head, what he feels and what he wants us to know. And there is another kind of feeling left out...sometimes we just don't get to do what other parents get to do. We can't always make it to parties or get-togethers and when we do, they often are not enjoyable because the time is spent making sure sweet Finn doesn't eat something he shouldn't or run away or break something breakable. We don't experience extra-curricular activities like tennis, t-ball and soccer the way other parents get to. We don't get to take the trips we would love to take with the children. And even though I know we are blessed in so many ways; sometimes it just plain old sucks and I want to throw to throw myself on the floor kicking and screaming. <br />
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Life certainly changes with any child entering the family. Your time is now their time and you have to make an effort to have alone time, friend time and husband/wife time. But sometimes, as a parent with a child that has special needs, you feel handcuffed to those needs. You wonder if things will get easier as your child gets older or if they will get harder as your child faces a whole new world of challenges. <br />
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<br />bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-33575335977428978662012-08-17T03:28:00.002-04:002012-08-17T03:28:12.321-04:00CNS Wellness and a lot of hopeA couple of months ago, my neighbor mentioned CNS Wellness to me. His company sponsors children with autism to seek treatment at CNS. He thought it may be something we would want to look into for Finnley. Then about one week after our neighbor mentioned something about CNS, I had lunch with a friend and she raved about CNS teaching her husband to walk again after he had a severe stroke. Less than a week later, Dan and I were waiting for our table at Ella's Folk Art Cafe and overheard someone talking about CNS and how it helped him with his ADHD and depression. Its funny how that happens some times. You go your whole life not knowing about something and within a short period of time, you hear about it from multiple sources.<br />
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So, we took Finn to CNS two weeks ago for an evaluation. We met with a neuro-scientist who asked me a lot of questions about Finnley and he observed Finnley's behavior. At the end of the hour long meeting, we agreed that we should "map" Finn's brain. I brought Finn back for a Q-EEG and Dan, Finn's teacher, and I complete Conner's Behavior Assessments.<br />
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Last night, Dan and I met with the neuroscientist again to review the results. I will post parts of the assessment once I get a soft copy, but it is all very interesting and exciting. Finn's brain, in many ways is normal. The front part of his brain is actually completely unaffected by his underlying genetic issues. This is great news, because in theory, this means Finn has at least normal intelligence. Where there is disconnect is in his temporal section of the brain. The section for sensory, memory, language, etc...His neurons are going in all kinds of different directions and not communicating properly. The doctor said if he didn't know anything about Finn's history and just looked at his Q EEG, he would think that he has autism. We have talked at length how Finn would probably give a false positive for autism, mainly because of his communication problems. <br />
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One thing that I found interesting, is that Finn is also demonstrating anxiety. We talked about the possible reasons...physical distress, emotional distress, or maybe it is that he is smart enough to know that he is different. <br />
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So, what does this all mean? It all means that there is a 70% chance that doing neurofield and LENS therapies will help make those neurons communicate like they are supposed to. We will also eventually start neurofeedback training if we are seeing positive results. Dan and I are very excited to start treatments. Finn will go two days a week for 30 minute sessions and he will really just have to sit there while electric impulses are sent to his brain. Should be easy. After 10 therapy sessions, we will do another brain map and see if there is any sign of improvement. If there isn't, we will most likely not continue unless we are seeing positive results at home. If there is signs of improvement, we will continue for 30-40 therapy sessions. <br />
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To give you an idea of some of the success CNS has had. They had an 8 year old child come in. She was non-verbal - she had never said a word her entire life. She is now only 1 grade level behind. She is saying sentences. She is behaving more like a typical child. <br />
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I am filled with hope right now for Finnley. This isn't going to cure his underlying genetic issues, but the thought of Finnley being able to truly communicate his needs and to perhaps have a chance at being an independent adult could not make me happier. So we are off on a new adventure<br />
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If you would like more information on CNS-Wellness, here is the its website. <br />
<a href="http://www.cns-wellness.com/" target="_blank">http://www.cns-wellness.com/</a><br />
<br />bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com1tag:blogger.com,1999:blog-5169651692820127570.post-71614562768772709692012-06-27T12:42:00.000-04:002012-06-27T12:42:19.056-04:00Finn's Hyperbaric Oxygen Therapy UpdateWell, we are officially done with this round of treatments. What a long 20 days! I'm not sure I know what day it is. Finn and I spent seven hours a day in the car or in the chamber getting the treatments done. He did amazing with the treatments and learned how to use an IPad in the process.<br />
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The next three weeks is when Finn's bone marrow will start cascading stem cells into his blood stream. Hopefully helping with immunity problems, language development and overall health. <br />
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We have already starting to see positive effects from this round of treatment. First, Finn has started another language burst. He is putting more sentences together and responding to questions with words other than "yeah." He is becoming more engaged and his response time to questions seems faster. <br />
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The other big effect is that Finn has started to sweat. This is amazing. I think it was around the 7th day of treatments that I felt his hands and they were clammy. This is such an important bodily process - not only to cool the body, but to remove toxins as well. <br />
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Another bonus is that Finn's hair is soft for the first time other. Finn has this amazing thick, coarse hair, but all of the sudden it is soft! Definitely a nice little perk.<br />
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Yesterday, was definitely the toughest day. Camila caught a virus a week or so ago and passed it to Finn which has led to a full blown sinus infection. I took him to the doctor yesterday morning to get a culture and then dropped him off at school. I then received a call from the doctor's office that they used the wrong swab to get the culture so we had to do it again. He then threw up in between therapy sessions yesterday all over himself and the car. We got home late and Dan and I spent the rest of the night cleaning out the car and car seats and worrying about our sick boy. Finn then threw up again this morning so he stayed home from summer school today and hopefully we can get this culture back this week to make sure we have him on the right antibiotic. <br />
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So, yes, the last 20 days have been exhausting and tiring for the whole family. Camila's routine has definitely been upset. During some of this time, Finn has been going to summer school in the mornings and then straight to therapy so he has been gone for 12 hours a day, but I think it has been worth the time and the money.<br />
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If you want to learn more about HBOT, I have attached a link to The Hyperbaric Centers of Florida where they have recent research posted. I definitely recommend that if you are going to explore HBOT as an option for your child or yourself that you do a lot of research. There are different arguments for different types of chambers and there are some risks associated with the treatments. It is expensive and takes a huge time commitment. <br />
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<a href="http://www.hyperbariccentersofflorida.com/Stem_Cell.html" target="_blank">http://www.hyperbariccentersofflorida.com/Stem_Cell.html</a><br />
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Here's a photo of Finn from his last day of treatment. Such a cute little astronaut!<br />
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<br />bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com2tag:blogger.com,1999:blog-5169651692820127570.post-52358062139561622592012-06-14T13:43:00.000-04:002012-06-14T13:43:06.195-04:00Update on Hyperbaric Oxygen Therapy SessionsFinn is through 1/3 of his treatments! It has been 7 consecutive days and he has received 14 - 1.5 hour treatments. I must admit, I have no idea what day it is as everything is starting to blur together.<br />
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Finn is doing such a great job in the chamber. He is tolerating the "helmet" amazingly. We had a little bit of an issue in the first couple of treatments because he can't get his thumb to his mouth, but he hasn't even tried to get it in there for the last couple of days.<br />
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His ears are doing fine with the pressure. Because he has a perforation in one ear and a tube in the other, we don't even need to worry about them popping.<br />
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The hardest right now is finding things to do inside during our 2 hour break. It is way too hot out right now to do anything outside for a long period of time even though there are lots of outdoor things to do there. He is also supposed to relax and take it easy as moving makes oxygen escape your body quicker. We have found a couple of things to do though:<br />
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<ul>
<li>Bowling</li>
<li>Indoor McDonalds Play Area</li>
<li>Shopping</li>
<li>Sprayground</li>
<li>Train Museum</li>
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So, I guess the big question is have we seen any improvements in Finn? Typically, most people do not see any noticeable changes until you get to the end of the 40 treatments and in the couple of weeks afterwards, but we are already seeing changes. Finn has started to sweat. He is officially sweating. His back, his arms, his hands, his legs, and his feet are all sweating. This will be amazing if he can continue to cool his own body and release toxins and impurities this way. <br />
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We are also seeing a quicker reaction time and response time from him. Not only that, he has slept through the night every night since we have started and taken good naps. Now, it could be that the long days are what is helping him sleep, but the increased oxygen is also known to help as well. I will keep everyone posted with any additional changes we see. I already believe the treatments are well worth the money and the time. <br />
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Here are some pictures. He isn't wearing the full helmet in these pictures, but you get the idea. He LOVES the spiderman scrubs by the way!<br />
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<br />bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com2tag:blogger.com,1999:blog-5169651692820127570.post-31038308139909131042012-06-06T21:44:00.000-04:002012-06-06T21:44:11.984-04:00The Next Twenty DaysI will probably be completely out of touch for the next 20 days. Finn just wrapped up his first year of elementary school and our summer seems to be completely booked.<br />
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Finn starts hyperbaric oxygen therapy treatments tomorrow. We are doing two treatments a day for twenty consecutive days. Each treatment is an hour and half and we have to wait at least two hours between treatments. Finn and I will be spending a lot of time in Zephyrhills, FL (about 7 hours a day).<br />
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The treatments this time around are more aggressive then what he had previously. They are 100% oxygen at a higher atmospheric pressure. He has to wear a bubble over his head and I will get in the chamber with him. We will both have to wear scrubs and clear physicals tomorrow before we actually get in the chamber. I'm very nervous about the treatments. I'm worried about how Finn will handle the bubble around his head and I'm worried about myself in a small, enclosed space going on a "deep dive." I'm also worried about one of the possible side effects of doing this therapy at a higher ATA...seizures. All in all, the possible benefits way outweigh the possible side effects and my own fears of the actual chamber itself.<br />
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The good news is that I will be getting to spend a lot of time with Finn and will be working one on one with him. We also learned that there is a bowling alley, a spray ground and a big park nearby so when we need to kill time in between sessions, at least we will have a lot to do. <br />
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Meanwhile, we are waiting for blood work to come back that was drawn this morning checking his blood counts and liver function. Finn has many unexplained bruises on areas where there is not bone so we are simply getting him checked out to rule out a blood disorder. Unfortunately, blood disorders are common problems with Trisomy 9p so we would rather be safe than sorry.<br />
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I'll update about how Finn is doing with therapy soon. In the mean time, we spent his day off at Busch Gardens today and here are some pics.<br />
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<br />bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-17596352262848417932012-05-23T12:16:00.002-04:002012-05-23T12:16:54.335-04:00The Joy of Standardized Tests and Your Developmentally Delayed ChildI recently had to collect some of Finn's old standardized test scores to send to the Department of Persons with Disabilities. I did not to look at them because I have learned over the course of last three years, that they don't mean anything to me.<br />
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Finn had his first standardized test at age 6 months. Sounds crazy, doesn't it? Early Steps did the test and the two sweetest ladies worked with Finn and me. At this point, we knew Finn was delayed, but at such a young age, its tough to prove it as milestone ranges are large.<br />
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We actually wanted Finn to "fail" this test because we knew he was delayed and "failing" the test would mean that he would get services. Of course, I would prefer that he had not developmental delays and we would not have even had to take he first step and get him tested, but since we were there...I hoped he failed (but not too badly). He ended up barely failing. I think the ladies had to <i>help</i> him fail and to them I am very grateful. <br />
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Finn has had multiple evaluations and tests since that time and my best piece of advice for when your child is going through these tests and you are handed the results...don't get down. Take it all with a grain of salt. If your child is improving over time...that is what matters. We have had wonderful therapists do the evaluations right before certain cut off points to make sure Finn scored lower so he could continue getting the services he was getting. <br />
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I will be the first to admit that I have had meltdowns over his scores. I mean, at Finn's real age of 33 months, his expressive communication age was equivalent to a 16 month old. Its really hard not to let that bother you. <br />
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Sometimes you may get an Early Steps coordinator or a therapist or some other evaluator that asks you ridiculous questions. I will never forget one Early Steps coordinator we had that came to the house. She asked if Finn says any words. I said no and she bubbled in the answer. The next 10 -15 questions were all related to expressive verbal language. I was welling up with more tears with each questions and I finally said if you have any more questions regarding Finn's verbal language, please don't ask and just bubble in no. This was so frustrating and I was emotionally exhausted before the test was over. This is not typical of an evaluator and if you run into this scenario tell them to stop and ask for someone new.<br />
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We have been told many times in Finn's life that the older he will
get the broader the separation will get between his peers and him. It
makes sense - when you are comparing kids at 12 months. The other child
may be at a 12 month level while Finn is at an 8 month level, but at 33
months - Finn was at a 16 month level. The difference grows
exponentially over time.<br />
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I have made peace with this, but I also don't let this handicap
Finn's potential. Often times, doctors or therapists or school
psychologists tell parents what their child's potential is. Don't
listen. Be real with everything, but also hold high expectations for
your child. I think so many parents give up when they get bad news and
its detrimental to the child...you have to help your child reach his or
her full potential and no one knows what that is. <br />
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I love going to Finn's neurology appointments. That statement
sounds pretty crazy as I'm typing it, but its true. I love his
doctor. He is so honest and he listens to every detail we have to say.
He does research before we meet with him. It's so refreshing. He
always sees a huge leap in Finn's development when we are there and comments on it throughout the whole appointment. He
says the minute you see Finn stop progressing...that's when you have a
problem, but always push him to progress. <br />
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So, in closing, don't take these tests too seriously. Look at them to see what you need to work on, but don't let them define your child or how you interact with your child. Don't let the test results break you. Keep praising each accomplishment, no matter how small it may be to other people. Cheer loud and often! <br />
bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com1tag:blogger.com,1999:blog-5169651692820127570.post-73123325828811881602012-05-09T11:52:00.002-04:002012-05-10T20:23:21.173-04:00Isn't it Always the Little Things?Some times those little things aren't so little...sometimes they are enormous. Yesterday, out of no where, Finn said "Where daddy go?" He then said, "I want daddy." He was clear as day and I sat there shocked with tears streaming down my face.<br />
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I tried to get him to repeat, but he had moved on to wanting his "hoo-hoos" aka shoes. It was tough to go to sleep last night. I was beaming brighter than the sun!<br />
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This morning, on the way to get his hearing aid molds done, he said "I want more." It sounded more like "I unt morey" but I knew what he meant - he had just finished some potato sticks (yes potato sticks at 8:00am). Yay!!!<br />
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When you child is given a such a rare diagnosis, you have to take everything doctors tell you with a grain of salt and understand that you can still push your child to be everything he or she can be. Children with Finn's syndromes have such varying issues - both medical and developmental. Just like with any "typical" child, you cannot compare one child with a syndrome to another with the same syndrome.<br />
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We have gotten excited over so many "little things" in the past from Finn pointing his index finger, to chewing food, to throwing a tantrum, to drawing a straight line on a piece of paper, and I just know we will be having many more celebrations.<br />
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Don't let words get in the way of you providing all that you can provide
for your child. Don't listen when someone wants to tell you what your child's potential is.<br />
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Our house is a wreck. I'm exhausted and live off of
caffeine and vitamins. I quit a great paying career. I go to
bed with my voice hoarse at night from talking so much trying to get
Finn to repeat after me. We have medical bills the size of mortgage payments (sometimes multiple mortgage payments) every month. And all of it is worth it to watch
your children progress and learn something new every day. The other
stuff doesn't matter at all, spending time with my beautiful family and sharing these amazing experiences is what life is all about.bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-5717633234952902032012-05-02T12:55:00.000-04:002012-05-02T12:55:00.803-04:00Kids ToolboxI cannot wait to get to Clearwater and check out this store. Kids Toolbox is designed for special needs kids and their parents/teachers and from what I can tell, the prices are very reasonable.<br />
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In addition, they hold $10 classes for special needs children on Sundays. Coming up is art, followed by music, and then karate. The ages for these classes is 5 to 11, but the lady I spoke to on the phone said younger children can participate as long as their parents stay with them. They just had yoga which I would have loved to take Finn too.<br />
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They also have free parent seminars one a month. The next topic is ASD and the topic following that is on how to stay calm.<br />
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For more information, check out their website: <br />
<a href="http://www.kidstoolbox.com/" target="_blank">http://www.kidstoolbox.com/</a>bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-4676397603708972752012-04-30T11:12:00.000-04:002012-04-30T11:12:12.965-04:00Finger PuppetsNow that I have children, I really wish I was craftier. I love making art...I love to paint (although my easel hasn't made it out of the closet in a while), but being craft is different than being artistic. <br />
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I try and do something "crafty" with them every week and it is really making me wish I took Cut and Paste 101 in college. This week, we are making finger puppets. These are so darn cute and super easy - you don't need a pattern. <br />
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Essentially all you need is some felt in different colors, a hot glue gun, and wiggly eyes and whatever you think would make them look cute. I just started cutting the felt in large finger shapes to make sure I would have enough room for my finger to fit inside after I hot glued the edges together and then I simply had the kids help me decorate them. They aren't "perfect" but they are a hit. <br />
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This is great idea for those who are working on isolating the pointer finger in occupational therapy. Also, make the finger puppets to go along with whatever your children are reading or learning in school to help reinforce what they are learning. bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-80966169720266481162012-04-27T12:29:00.004-04:002012-04-27T12:29:37.195-04:00Tympanoplasty Coming This SummerFinn has to have another surgery this summer. It absolutely sucks and why we work so hard on keeping him healthy. Basically the sinus infections he had recently left debris in his ear that cannot get out on its own or with the equipment at the ENT's office.<br />
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Since the ENT has to clear what is in his ear anyway, she is going to go ahead and fix the perforation in his ear as well. The hole makes up 1/4 of his ear drum and it was caused by a non-cancerous tumor that grew in his ear also known as a cholesteatoma. Skin essentially grew in and around his ear tube and instead of the skin pushing the ear tube out, it formed a tumor. The ENT removed the tumor last October which is what caused the hole. She didn't want to repair the hole until he was around 5 because typically kids start outgrowing ENT issues/get healthier at around the age of 5, but since she has to go into that ear anyway, she might as well fix it now.<br />
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The procedure is called a Tympanoplasty. She will make an incision along the back of his ear and take some cartilage and patch the ear drum. The procedure will take an hour and half to two hours and he will have it at the hospital in lieu of a surgery center. We will see the ENT again in July before we schedule it. I don't know too much about it other than that. Hopefully his hearing will improve in that ear since his hearing has been getting worse. <br />
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The ENT also wants us to get him cultured every time he gets nasal stuff. The culture always comes back positive for bacteria and of course it is never the normal bacteria. The last one was a bacteria normally found in GI areas so the thought is he is having reflux again and bacteria is getting up into his sinus cavity. We don't think he is having reflux often, but we do know he still does occasionally. It definitely isn't like the old days where he had both vomiting and reflux issues. We are putting off going back to the GI because frankly, they tell us the same thing every time we go and the next test they will want to do is a PH test and we aren't ready for him to do that. However, if he starts getting sick again, then we will have no choice.<br />
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Not that this week was entirely bad...Finn said "I'm sorry" to Camila clear as day. He pushed her off the train table after Dan and I caught them both up there dancing. Poor Camila had just a little fall with lots of drama. It was <i>almost</i> worth it to hear Finn say "I'm sorry." Sorry, Cam - just know you took one for the team :) We also scoped out a new place to do hyperbaric oxygen therapy treatments and did some negotiating on the price and I finally got Finn on the FL medicaid waiver list. <br />
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Hopefully better news next week! At least we have no doctor apts next week and his sinus related medication has gone from 6 different medicines every day to two medicines. So looking forward to a break from doctors for a while! Only well visits and scheduled follow ups please, children :)<br />
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<br />bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-32185938397088046232012-04-25T12:31:00.004-04:002012-04-25T12:31:40.593-04:00Florida Medicaid WaiverI first heard about this waiver about two years ago. For those families that are not eligible to put their disabled child on medicaid because they make too much money, this is supposed to be an option. The thing of it is...no one really knows how to get their child's name on the list, how long the wait is, and what agency actually assists you in doing this. Its like an underground thing that no one really talks about, but everyone has heard something about it.<br />
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I started looking into it and didn't get very far and eventually gave up. I was recently inspired to pick that baton back up and have spent the last couple of weeks on the phone with our government - Medicaid, Social Security office, Department of Family Services, etc. I can't tell you how many people I talked to, how many times I left messages and didn't get return phone calls, and how many times the phone simply just rang and rang and rang. No one knew what I was talking about.<br />
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I kept googling like crazy and finally while I was on my son's school website, I noticed a link for the Agency of Persons of with Disabilities. I found the contact for our county and left a message last Friday on her voice mail. Well, guess what, this morning she returned my call and even better - she is the person that signs us up. So, Finnley will officially be on the waiting list for the medicaid waiver. She did warn me that the wait time is anywhere from 5 years to 10 years. Yes, that is right <u>years</u>. I had actually heard the wait was 7 years, so this didn't sound far off. <br />
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This won't pay for everything (it helps with therapy services not medical) and you have to prove an intellectual disability. In the state of Florida you cannot prove this until the child is 5 years old and the school does an IQ test. However, if your child has a known condition that will most likely cause an intellectual disability, then he or she can get on the waiting list earlier than 5. <br />
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I'm not an expert in this so as I learn more, I will share. <br />
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<a href="http://apd.myflorida.com/contacts/" target="_blank">http://apd.myflorida.com/contacts/</a>bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-32841362544359502782012-04-22T21:10:00.000-04:002012-04-25T13:09:09.135-04:00Brain Balance<br />
One of the worst phone calls I ever received was when Finn was about 14 months old. We had already learned that he has Trisomy 9p and the 9p24.3 deletion, but at this point in time we were making the rounds with the specialists and learning more about some of the specific problems he has. We knew he had two heart defects, hearing loss, orthopedic issues, urology issues, GI issues, developmental delays, swallowing/chewing issues, etc. and somehow I took most of those things in stride.<br />
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Finn's neurologist called me at work. His brain MRI results were in. I closed my office door and listened hard. The doctor said he needed Dan and me to come in and talk to him. I told him I was about to leave to travel on business and couldn't come in for another couple of days. He started going over the issues over the phone:<br />
<ul>
<li>Atrophy or encephalomalacia of the mesial temporal lobes and mesial temporal sclerosis</li>
<li>Arachnoid cyst in the mid to inferior posterior fossa</li>
<li>Prominence of ventricles and the extra-axial fluid raises the possibility of hydrocephalus</li>
<li>Gliosis or dysmyelination in the right lateral ventricle</li>
<li>Sinus and mastoid inflammation</li>
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Essentially, there were a number of problems that need further attention. That was a sucky day. The range of emotions I felt was crazy. I talked to my older brother on the phone and he reminded me that none of this changes who Finn is and he is still the same Finn. Of course I knew this, but for some reason, hearing this helped.<br />
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We were referred to a neurosurgeon and long story short - we are not doing surgery on Finn. He may need a shunt at some point, but the fact of the matter is he is only showing mild symptoms right now and the poor kid has already been through 8 surgeries and had to be sedated for other procedures multiple times. <br />
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All of this thought, really makes me wonder why Finn is doing remarkably well given his MRI results and then I wonder why children, especially children with ASD or other neurological issues have normal MRIs. The neurosurgeon didn't have an answer for this. Then I heard of Brain Balance that really aims specifically at children with exactly this issue: normal MRIs but many neurological problems.<br />
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I stumbled upon an article in one of those neighborhood news articles about Brain Balance in Oldsmar. I'm really interested to hear if anyone has done this or wants to explore it. They have a free parent event coming up on Saturday, May 12th at 10am.<br />
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From what I understand they take a holistic approach to really find out what part of the brain is not functioning as it should. They start with testing - not to label the children, but to look for patterns in their brains. They look at nutrition and do a complete work up - blood/urine/stool (we did this for Finn and I do recommend it). Essentially, they are then placed in an after school program that is a 1 to 1 ratio that lasts for 12 weeks. The testimonials are amazing, but wondering first hand how expensive it is and if the results are as impressive as its website says they are.<br />
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Here is the link to Brian Balance <a href="http://www.brainbalancecenters.com/" target="_blank">http://www.brainbalancecenters.com/</a><br />
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<br />bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-14414222900184229092012-04-13T12:50:00.000-04:002012-04-13T12:50:39.321-04:00Our "Typical" Child, CamilaWe knew we wanted more than one child. Dan always joked of wanting a baseball team and all the girls that came in between. I was thinking more along the lines of three, but we definitely wanted more than one. When Finn came along, I knew we had to rethink our previous vision. Let's face it, having a child with special needs and medical issues takes a lot of your time, money and energy. Yet, I knew we had to have at least one more :)<br />
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From the moment Camila was born, I could feel the special bond she and Finnley shared. Finn just new Camila was part of the family. He totally understood and he loved her! <br />
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I took 12 weeks of maternity leave and I was lucky to have our nanny come three 1/2 days a week to help. Most of the time though, I left Camila with the nanny while I took Finn to doctor appointments or to therapy. I felt really guilty that I slighted Camila of some of our bonding time.<br />
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I realized quickly with Camila that I had no idea what I was doing. I felt like a first time mom all over again because everything was so different than it was with Finn. She latched on right away, she slept through the night fairly quickly (although this changed), she gained weight, she didn't have reflux, her joints weren't so loose, etc...All of those baby books I through out the window when I had Finn, I brought back. <br />
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We only went to doctor apts for well visits. When we introduced table foods she chewed by herself without a year of therapy to help her chew! She rolled early, crawled early and walked at 9 months. At 16 months she says more words than Finnley does and she signs about another 50 plus. She runs, she jumps, she kicks a soccer ball and she can swim on her own. Things that took Finn so much work and repition to acheive she just does naturally. BUT we celebrate each of her milestones as much as we celebrate Finn's.<br />
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Camila simply sparkles. She loves shoes. She loves being funny. She loves shoes. She loves swimming. She loves shoes. She loves playing with Finn's trains when he is not around. She loves shoes. She loves Elmo. She loves shoes. She loves playing with my hair while she falls asleep.<br />
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One of the best things about me no longer "working" is that I get one on one time with Camila while Finn is at school. I worry about things I have read about "typical" siblings and how there is a high depression rate due to something similar to Guilty Survivors Syndrome. I know she doesn't understand why we have to spend so much time running Finn around to the doctors or therapy now and she may not for a long time. <br />
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I love watching Finn and Camila together. They are basically at the same level right now with most things and they feed off each other and they both learn from each other - the good and the not so good. There are areas where Camila is already more "advanced" than Finn. I thought this was going to be hard to watch because I knew one day it would come, but it isn't as hard as I thought it would be. I'm so proud of her and the fact that Finn is learning from her is a wonderful thing. <br />
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I sometimes miss picking Finn up from school early as we did for 8 weeks. As soon as Finn would enter the hallway, Camila would run down and give him a big hug and kiss. <br />
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I hope Camila grows knowing how very special she is and how wonderful she is. I don't want her life to be all about Finn's challenges, but I do hope that they remain close. One day, Dan and I will sit her down and explain Finn's Syndromes and I don't know what that conversation is going to look like yet, but I do know her feelings for Finn will never change. <br />
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I don't know if we will have a third or not. I think we learn towards not, but we aren't quite ready to get rid of the baby stuff just yet. <br />
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<br />bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0tag:blogger.com,1999:blog-5169651692820127570.post-16918854904131214862012-04-12T12:24:00.002-04:002012-04-12T16:21:20.782-04:00"Mirt" and "By"What a strange feeling...to wake up at 4 am with your child standing by your bed shouting "Mommy" "Mirt" I woke up very confused and figured I must be dreaming. But sure enough, Finn was standing right there asking me for milk in his not so inside voice.<br />
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He pulled my hand, led me into the kitchen, devoured a glass of Almond milk and then asked me for a "by" aka "bar" as in granola bar. I gave him a granola bar and he led me back to my bed and he crawled in next to my husband and fell right back to sleep still holding on to the uneaten bar.<br />
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I couldn't help but smile and chuckle to myself. Finn has never come down the stairs by himself in the middle of the night. Not only that, he found me and and then verbally ask for something specific that he wanted.<br />
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Long gone are the days of him waking up every 20 minutes and having to put him back to sleep via rocking or holding. Long gone are the days of spending the night by his side knowing you were not going to sleep at all, but that as okay as long as you heard him breathing well. Gone are the days of wondering if he was ever going to walk. Gone are the days of being scared to give him something to eat or drink because he chokes and aspirates. Gone are the days of wondering if he will be able to say anything at all when you just want to hear "mommy" so badly. <br />
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bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com3tag:blogger.com,1999:blog-5169651692820127570.post-75336937901374553442012-04-10T12:38:00.001-04:002012-04-10T12:38:23.056-04:00Allergy Friendly EasterFinn is allergic to just about everything that goes into Easter candy...dairy, soy, corn (including corn starch and corn syrup), possibly wheat (gluten) and peanuts. On top of it all, the kids are vegetarian. This makes giving them any kind of "fun" food a tad bit difficult.<br />
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I was going to order allergy free chocolate for the kids for Easter this year, but I cannot believe how expensive the bunnies are!!! They are ridiculous!<br />
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I made these chocolate lollipops using Enjoy Life Brand Mini Chocolate chips (you can get the chocolate chips at Publix and Wal-Mart, but I usually buy them at Nutrition Smart or Whole Foods - for some reason they are cheaper there. I bought the candy molds at Target for $2.00. I wish I got a better picture of them before the kids devoured them, but they turned out really cute and it was so easy!!! I just melted the chocolate chips in the microwave - 20 seconds on power 5, stir and repeat and poured them in to the molds. Put them in the refrigerator until they set. How easy!!! <br />
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I buy Enjoy Life brand a lot for easy on the go items when I don't have time to make allergy free things such as cookies, granola bars, etc. Both kids love their stuff and they are free of the 8 most common allergens.<br />
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I also bought them Surf Sweets Jelly Beans. I found these at Nutrition Smart off Dale Mabry and on-line. They are the only vegetarian jelly beans I could find and they are organic, gluten, casein, and soy free. They are really yummy!<br />
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Hope everyone had a great Easter! Both of my little bunnies made out like bandits! <br />
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<br />bgracioushttp://www.blogger.com/profile/16899072441788059161noreply@blogger.com0