tag:blogger.com,1999:blog-33465810933030593022024-03-05T07:26:19.748-08:00Maddy to the MaxEricahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-3346581093303059302.post-51326695395682793002016-08-31T19:53:00.002-07:002016-08-31T19:53:39.528-07:00We are the Lucky Ones<div style="-webkit-text-size-adjust: auto;">
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We are the lucky ones. </div>
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That phrase is hard for me to say. There are a lot of things in our family life as a special needs family that are not easy. There are times I don't feel lucky. There are times I want to scream. There are times I want to cry. There are also times I laugh and laugh because we are having so much fun.</div>
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I say we are the lucky ones because it's back to school time. That time most special needs parents dread. Most are prepared for a fight. A fight with teachers. A fight with school administration. A fight for the future of their children.</div>
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I am a member of special needs parent group on Facebook. I have already seen post after post of parents who have to fight to get their kids an education. Some schools don't want to have to figure out services. They want to bus kids elsewhere. They don't want to hire staff for those kids who require a one on one paraprofessional.</div>
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We are among the lucky ones, because so far, we haven't had to have these fights. It breaks my heart to hear the stories some parents have about the way their families and more importantly their children are treated.</div>
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We are lucky because our experiences in school so far have been nothing short of amazing. Maddy is on the autism spectrum. She is non-verbal. I've never been so scared in my life as I was last year when Maddy started kindergarten. Maddy has amazing paras who truly love and care about her. They communicate with us through a notebook we send back and forth. And luckily, those same two paras are her paras this year. Maddy is now in first grade. These two women are like family.</div>
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I was nervous this year, as there have been so many changes to staff this year. Maddy has a new case worker, a new principal, a new occupational therapist, and of course a new teacher. That's a lot of change for a kid who does well with routine. So far, things have been great.</div>
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We talked to the new principal earlier this year about sending Maddy's i-pad to school. We recently purchased one and put a very expensive communication app on it. This app is a PODD system that is exactly like the one the school started her on last year. It has the same type of pictures. I know some schools refuse outside devices. Ours had no problem. I offered to sign a liability waiver (lawyer momma came out) if necessary. He made it seem easy. I was so grateful.</div>
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We talked to Maddy's new case worker at the open house and I felt good about the meeting. We had some concern because we'd heard Maddy was going to have a new para. She was quick to inform us that it was someone Maddy had worked with in the past and that she would not put someone who wasn't familiar with Maddy with her. That took a huge load off my mind. It turns out it worked out that Maddy got the exact same paras she had last year.</div>
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We are lucky because our school is inclusive. I know there will be bullying some day. It's inevitable with kids as a phase of life to tease and make fun of others. But right now, so many kids know Maddy and always say hi to her when we are out in public. Staff, kids and parents I don't know routinely say hi to Maddy and smile at her. At Maddy's kindergarten "graduation" program last year, staff (including the music teacher) went out of their way to include her in the program. Each kid had a line to say. Maddy's line was recorded on a taking device by her teacher and Maddy got to push the button to replay it. Things like that don't happen everywhere. </div>
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I am so thankful that we live in such an inclusive community. I am so thankful for school staff who love and care for our daughter everyday. THANK YOU from the bottom of our hears for loving our daughter. You are what education staff everywhere should embody. In this way we truly are the lucky ones.</div>
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Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com0tag:blogger.com,1999:blog-3346581093303059302.post-65498974893602626732016-02-25T08:29:00.002-08:002016-03-08T20:39:24.425-08:00Communication Breakthrough (PODD system)<div class="MsoNormal">
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Recently, Maddy’s school got a PODD system. It stands for: P-
Pragmatic= the way we use language socially O- Organization= the arrangement of
words and symbols in a systematic way DD- Dynamic Display= the changing of
pages. *Source (<a href="http://www.myeasybee.com/blog/podd-intro/">http://www.myeasybee.com/blog/podd-intro/</a>)
For those that don’t know, Maddy is non-verbal. She doesn’t use words to
communicate the way you or I do. We (both at home and school) have tried other
methods of communication, such as sign language, a PECS (picture exchange
communication system), etc. While the PECS is similar to a PODD system, the
difference is that with the PODD system, all the pictures are arranged in a
book by category according to how we would speak in sentences. <o:p></o:p></div>
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Maddy started using the PODD system at school right before
Christmas. Shortly after the holiday break, we had an IEP meeting and discussed
the new system among other things. Her teachers were all very excited to talk
about how fast she was adapting to the book and how she’d already begun to use
is on occasion on ask for something. <o:p></o:p></div>
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After the IEP meeting, school began sending the book home.
The hope is with this system that she can take this book everywhere and use it
to communicate to anyone, not just close family and teachers. We haven’t pushed
its use too hard at home, but every night, I take the book out of Maddy’s
backpack and make sure it is available to her. Many times, she will actually
take the book to the couch and flip through the pages looking at pictures. I
guess at this point, I feel like it’s good for her to look at it in a
non-stressful or pressured way. <o:p></o:p></div>
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That approach seems to be paying off. One of the pictures has the caption “Go Away”.
Maddy has pointed at this picture when she is mad or frustrated with me (for
example, after I give her some medicine). She also thinks it’s quite funny to point
at this picture and give me a devilish grin. I always say, “Go Away?” in a very
offended tone and she laughs at me. I often reply with “You go away!”, which makes
her laugh harder. Her teachers have commented more than once on Maddy’s sense
of humor and marvel at how she is able to get her jokes across even without
words. The devil grin says it all. <o:p></o:p></div>
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Another recent breakthrough was when she asked me to read
her a story. Maddy never wants me to read her a story, preferring to hold the
book herself and be in control of the page turning. But, on that night, she
pointed to the read me a story picture. I asked her almost in disbelief if she
really wanted me to read her a story. She nodded her head yes with a bright
smile on her face. It was all I could do not to dissolve into a puddle of happy
tears. I started to read her a story. She let me get about 3 pages in before
she took the book from me. But, it was progress none the less. <o:p></o:p></div>
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I’m so happy that the school was able to purchase this
system and make this type of communication possible for Maddy. We’ve never had
such quantifiable results with any other method in the past. She seems to be
picking up this method so quickly in comparison. We are so incredibly blessed
when it comes to the staff working with Maddy. Her teachers, her paras, the
special education coordinator, all have worked incredibly for Maddy’s best interests.
I was so nervous for her starting kindergarten this year. I’ve heard and read
the horror stories of what some parents have to go through in order to get
their children services. We are so thankful that Maddy has had nothing but the
best in care and education at school this year. The progress she has made has
been amazing and we can’t wait to see what the rest of the year brings! <o:p></o:p></div><div class="MsoNormal"><br></div><div class="MsoNormal">*update: Maddy has continued to use her PODD book both at school and at home. She recently showed me the picture for bedroom when she wanted to go to bed. She did so completely unprompted. </div>
Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com0tag:blogger.com,1999:blog-3346581093303059302.post-85791975405160321392016-02-11T09:26:00.000-08:002016-02-11T09:27:17.172-08:00Good News!<div class="separator" style="clear: both; text-align: center;">
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We received good news the other day. The test results for the secondary genetic test to determine if Maddy had Pitt-Hopkins Syndrome came back. Maddy does not have this disorder. That was a bit of a relief, since this particular diagnosis can come with further health complications. <br />
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We were actually all on our way to the Mayo Clinic for another appointment when the call came. Maddy also had an appointment with an allergist. Long story short, the things we are worried about her being allergic to (dairy and gluten) are hard to test for. They basically told us that for a gluten concern we need to see a GI doctor. For the lactose intolerance issue, Maddy would need to blow into a breath device to test for it. That's not likely to happen. Therefore, we are continuing to do what we have been doing regarding Maddy's diet. <br />
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Life being what it is, I've been really behind in posting anything here, but am hoping to get back to regular posting soon.Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com0tag:blogger.com,1999:blog-3346581093303059302.post-89363837896154592032015-11-16T19:53:00.002-08:002015-11-16T19:53:24.055-08:00The GeneticTest Results<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Arial, Helvetica, sans-serif;">It's been several weeks since we had the appointment where we discussed the results of Maddy's genetic test. It took me awhile to digest the results. To back up a bit, Maddy had whole </span>exome<span style="font-family: Arial, Helvetica, sans-serif;"> gene sequencing. </span><span style="background-color: white; color: #252525; font-family: sans-serif; font-size: 14px; line-height: 22.4px;">Exome sequencing</span><span style="background-color: white; color: #252525; font-family: sans-serif; font-size: 14px; line-height: 22.4px;"> is a technique for sequencing all the protein-coding </span><a class="mw-redirect" href="https://en.wikipedia.org/wiki/Genes" style="background: none rgb(255, 255, 255); color: #0b0080; font-family: sans-serif; font-size: 14px; line-height: 22.4px; text-decoration: none;" title="Genes">genes</a><span style="background-color: white; color: #252525; font-family: sans-serif; font-size: 14px; line-height: 22.4px;"> in a genome (known as the </span><a href="https://en.wikipedia.org/wiki/Exome" style="background: none rgb(255, 255, 255); color: #0b0080; font-family: sans-serif; font-size: 14px; line-height: 22.4px; text-decoration: none;" title="Exome">exome</a><span style="background-color: white; color: #252525; font-family: sans-serif; font-size: 14px; line-height: 22.4px;">)</span><span style="background-color: white; color: #252525; font-family: sans-serif; line-height: 22.4px;"><span style="font-size: xx-small;">.1 </span></span></div>
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<span style="background-color: white;"><span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">Maddy's test revealed two anomalies. The first was on a gene that's been named as POGZ. Maddy has what's called a de novo deletion on this gene. I understand from the geneticist, this means we as parents are not carriers of this and it's a mutation that's new to Maddy. For whatever reason, Maddy's copy of this particular gene didn't transfer right and as such, she is missing one of the proteins that make up the chain of this particular gene. Not a lot is known about this particular gene or what it does. We've actually agreed to participate in a study group on this gene. </span></span></span></span><br />
<span style="background-color: white;"><span style="color: #252525; font-family: sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif; line-height: 22.4px;"><br /></span></span></span>
<span style="background-color: white;"><span style="color: #252525; font-family: sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif; line-height: 22.4px;">The other potential result is on a gene named NRXN1. Mutations on this gene are associated with something called Pitt-Hopkins Like Syndrome-2. This syndrome often comes with autism as an additional diagnosis. It can sometimes come with health problems such as heart and liver issues. I say potential result because the whole exome sequencing test showed a mutation on one of the gene pair but not the other one. The geneticist told us this could be partially due to the type of test. Maddy only has this syndrome if there is a mutation on each gene of the pair. There is a specific test for this particular syndrome that will tell us for sure. This test will also look at both Dave and my DNA to determine if we are carriers of this, as it is a recessive trait that can only be passed on if both parents posses it.</span></span></span><br />
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<span style="background-color: white; color: #252525; line-height: 22.4px;"><span style="font-family: Arial, Helvetica, sans-serif;">So, long story short, we still don't know a whole lot. What information we do have is that Maddy does have a single gene mutation on a gene that no one is exactly sure the purpose of. We also know she might have something called Pitt-Hopkins Like Syndrome-2 but we won't know for sure until another test result is in. Either way, there isn't anything we can do other than what we are already doing. </span></span><br />
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<span style="background-color: white; color: #252525; line-height: 22.4px;"><span style="font-family: Arial, Helvetica, sans-serif;">I'm sorry if this post is confusing with the medical/scientific jargon. I'm a lawyer. I struggle with the medical stuff a lot. It's difficult for me to understand the terms and how best to describe them to everyone. For now, we'll keep looking and keep trying to understand the information we do have. </span></span><br />
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<span style="background-color: white; color: #252525; line-height: 22.4px;"><span style="font-family: Arial, Helvetica, sans-serif;">Thanks everyone for all the support you've given our family whether emotional, financial or otherwise. We would not be able to make it on this journey without the help of family and friends. </span></span><br />
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<span style="font-size: xx-small;">Sources:</span><br />
<span style="font-size: xx-small;">1.<a href="https://en.wikipedia.org/wiki/Exome_sequencing" target="_blank"> https://en.wikipedia.org/wiki/Exome_sequencing</a></span>Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com0tag:blogger.com,1999:blog-3346581093303059302.post-89702745310130855452015-09-04T06:57:00.000-07:002015-09-04T06:57:00.543-07:00Work and Maddy Don't Mix<div class="separator" style="clear: both; text-align: center;">
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Sometimes it's hard to do my job. It can be a difficult job anyway, but what I mean is that it's hard not to think "why us?" My job as an attorney means that sometimes I represent parents or children in child protection cases. Sometimes I represent clients in family law cases where parents are fighting over custody. Not to say that these parents aren't good parents. They are most of the time.<br />
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For me the hard part is reading reports about the kids in these cases. But not for the reason most people would think. It's hard for me to read these reports because it makes all the more glaringly obvious that Maddy is behind developmentally. It's hard to read reports about a one year old and all the things this baby does that my 5 year old still doesn't do. It makes me want to cry out, "Why Maddy?"<br />
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Most of the time, I don't even think about this. Maddy is who she is and we love her the way she is. But there are times either when I read about other kids, or see other kids in public or at her school that I am so frustrated. Not for myself. I'm frustrated on Maddy's behalf. It's hard to see her struggle with tasks that other kids find so easy.<br />
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Communication is the one I struggle with the most. You can just tell that Maddy wants so badly to talk and use words. I can see her struggle to try and make sounds on cue. She simply can't do it right now. We've been working on alternatives, such as signing or pointing to pictures, but neither one of those methods have been super successful at this point.<br />
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It's hard not to feel at these moments like we are letting Maddy down in some way. I know that's not rational, but as parents we want to do and be everything for our kids. Kiss the boo-boo better and slay the dragons. It's so hard not to try and compare other kids to Maddy. I can put these thoughts in the back of my mind most of the time, but every now and then, it sneaks in. That being said, Maddy is a bright shiny point of light in our lives. And that, I wouldn't change for anything.Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com0tag:blogger.com,1999:blog-3346581093303059302.post-52138628512679561182015-08-31T08:44:00.001-07:002015-08-31T08:44:37.066-07:00A Letter to My Daughter on her Birthday (belated)*Note: My daughter's birthday was several months ago. I wrote this then but wasn't ready to share it until now.*<br />
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My beautiful daughter,<br />
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Today you turn 5. It seems like the time has flown by. It feels like it was just yesterday that your dad and I were on the way to the hospital to meet you. You were born at 4:00 am, all 8 pounds and 8 ounces of you. You were and continue to be the most beautiful thing I have ever seen.<br />
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At 6 months old, we began to worry about you. You weren't gaining much weight and you weren't yet holding up your head. We went to a few different doctors who all told us to keep an eye on it and follow up. Then a few months later, we went to more doctors and did some tests. We've continued this pattern on and off with you for five years now. Most of your test results so far have come back as "normal."<br />
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My happy, smiling, precious girl, those doctors and test don't know what they are talking about. You are so much more than "normal." You, my darling, are extraordinary. You light up a room when you enter it. Despite the fact that you can't talk, you are able to communicate to everyone what you want or need. You are tenacious and determined. You know exactly what you want and don't give up until you get it. I have not doubt in my mind that you will continue to do amazing things as you get older.<br />
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Daddy and I love you more than rainbows! Happy Birthday Maddy!Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com1tag:blogger.com,1999:blog-3346581093303059302.post-51060553198878884432015-04-02T05:00:00.000-07:002015-04-02T05:00:06.850-07:00Autism Awareness Day 2015<div class="separator" style="clear: both; text-align: center;">
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Today, April 2nd, has been set as World Autism Awareness Day. It's taken me awhile to come to terms with Maddy's diagnosis of autism. In fact, even after Maddy was diagnosed, I downplayed it. "<a href="http://maddytothemax.blogspot.com/2015/01/testing-results-part-2.html" target="_blank">The psychologist said it's not really autism</a>" was my mantra. Every one has always told us she's not autistic. Her primary care doctors, many of the specialists, her teachers; all have told us they don't think she has autism.<br />
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But as I read more and more about autism and how every one's diagnosis looks a little bit differently, I really feel more and more comfortable saying that Maddy has autism. It wasn't really the medical or technical based sites that helped me become more comfortable with this. It's been the stories of other parents and their children on the autism journey.<br />
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In particular, it was <a href="http://themighty.com/2015/03/the-unexpected-lesson-i-learned-from-an-autism-checklist-on-the-internet/" target="_blank">this post</a> that got me really examining the issue. James's Mom wrote a beautiful post about their journey to an autism diagnosis. James sounds a lot like Maddy in many respects. It also helped to hear another mom had similar thoughts to mine. "My kid doesn't have autism, she makes eye contact." "My kid doesn't have autism, she love snuggling, hugs, and kisses."<br />
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But Maddy does do other things that fall within the autism spectrum. She doesn't really know how to interact with peers. Rather than interacting through play, she tends to either either ignore other kids or she will try and touch them, their stuff, etc until she gets a reaction out of them. Maddy, at almost five, still doesn't talk. Her communication skills are very limited. Maddy has multiple sensory issues that are common in many kids with autism. Maddy also has a tendency to do things repeatedly and will often get upset if a routine is changed.<br />
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To read about other autistic kids and how their autism is different from the public perception of what autism looks like, makes it more real for me. It makes autism more understandable and approachable. That's why today on World Autism Awareness day, I'm choosing to share our family's story. I hope that it helps the public understand that not every one's autism diagnosis looks and acts the same. That each child with autism is different and should be looked at individually without the assumptions that many have.<br />
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For more information on autism, how you can raise awareness, and the Light it up Blue campaign, please visit<a href="https://www.autismspeaks.org/" target="_blank"> Autism Speaks</a>.Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com0Minnesota, USA46.729553 -94.68589980000001641.126363500000004 -105.01304830000001 52.3327425 -84.358751300000023tag:blogger.com,1999:blog-3346581093303059302.post-82169421519327792402015-03-06T11:50:00.001-08:002015-03-06T11:50:14.725-08:00Maddy and Sleep: Round 2<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: xx-small;">Maddy coloring in the waiting room.</span></div>
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We went back to the Mayo clinic this past week to do another sleep study. Have I mentioned I really hate sleep studies? Maddy does well for the most part. The real struggle is holding her down while she screams the whole time the tech is gluing the sensors to her head. </div>
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Overall, Maddy puts up with it. She has a stuffed Eeyore that she doesn't show huge preference for until she's in a situation such as this. She uses him for comfort in these cases. She never really does that in any other setting. Thank God for Eeyore!<br />
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Long story short, we learned two things. First, they retested Maddy's iron levels again. She is still pretty low. The doctor recommended we use a liquid iron supplement, as low iron can cause restlessness during sleep and hyperactivity during the day. That explains a lot. Second, although having her tonsils and adenoids taken out fixed the obstructive apnea, she still has central apnea. Meaning, her brain is not telling her to breath for a few seconds before it kicks back in. She's still having around 20 of these episodes an hour. Yikes! <br />
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So, what does that mean for Maddy? The doctor wants her to try a CPAP mask at night. I'm not sure how in the world we will make that happen, but clearly we need to try. I was doing alright with all of this until I Googled CPAP masks for kids. Seeing the options of masks strapped to the heads of little ones is hard. Especially when I start imagining having to strap one to Maddy's head. <br />
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In fact, it's hitting me as I'm writing this and I'm crying. I don't know why this particular issue has hit me harder than the others. I think maybe it's because we keep getting more and more symptoms or separate health issues to deal with, but we are no closer to a diagnosis. We still don't know what's causing these underlying conditions, or if there is anything specific causing them all. We just don't know. So far, we haven't had to put Maddy on any permanent medications and/or equipment. That's clearly going to change now. Perhaps that's why these results are hitting me so hard. Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com1tag:blogger.com,1999:blog-3346581093303059302.post-87825349355967053752015-02-18T12:12:00.001-08:002015-02-18T14:19:35.876-08:00An Open Letter to a Lady at a Recent Community Event<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpO09yyDIEjd3Yc_nOYgESQHeQHXdhCOuE-jyTgkcB4Th5yUDyHh81S4433oDwkNVfejjRbmXUvpcZVw1yYGTYw-T0wWOSTJCGmrD040zzp4bYxA0CTC8e8QgT24T5J9bIH_rtHl2K16g/s1600/snow.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpO09yyDIEjd3Yc_nOYgESQHeQHXdhCOuE-jyTgkcB4Th5yUDyHh81S4433oDwkNVfejjRbmXUvpcZVw1yYGTYw-T0wWOSTJCGmrD040zzp4bYxA0CTC8e8QgT24T5J9bIH_rtHl2K16g/s1600/snow.jpg" height="159" width="200" /></a></div>
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To the older lady at a recent community event,<br />
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I know who you are. I've seen you at these events before. I thought you were joking when Maddy ran by you and you said, "Control her!" It never occurred to me that someone would actually say that. I laughed as I ran after her, but when I looked back at you, you were not smiling. It took me a minute to process what that meant, partially because I was busy watching where my daughter went. When I finally realized that you were serious, many mean thoughts went through my head. Part of me wanted to march back over to you and give you a piece of my mind. But I refrained. Partially because I was watching Maddy. Partially because I knew many people at the event and I didn't want to cause a scene. And finally, I didn't yell at you because I realized that by laughing at your comment as I hurried by probably irritated you more than if I had yelled at you. <br />
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You may not have much experience with a special needs child, a child who really can't sit still for very long and likes to explore unfamiliar environments. A child who can't communicate in words to anyone what she wants. She didn't hurt you. She didn't come near any of your stuff and she didn't break anything. She only blocked your view of the event for a few seconds as she ran past.<br />
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My daughter may look like a typical child, but you don't know our story. You don't know that my daughter doesn't speak. You don't know that I still have to cut my almost five year olds's food into bite size pieces so she can eat. I have no way to know if my daughter's in pain, or if she's bored. It took a long time for her to be able to communicate with us if she was hungry or thirsty or wanted to leave somewhere. <br />
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Would you tell me that I need to keep my daughter at home because of any of this? That I shouldn't take her to these types of events because it annoys you? Maddy isn't a "typical" child, but even if she was, you chose to judge her and me for that matter. Kids should be kids. Kids should be free to run around at such community events. We should want children to explore and run rather than ask them to sit still and be seen and not heard. There are many children who can't do those things due to a disability. We should encourage kids that can do those things to enjoy every bit of life they can grab. Maddy isn't a "typical" child, but even if she was, I would have let her explore the area surrounding the event. Because that is what we should encourage all kids to do, "typical" or not. That is what I will continue to encourage my daughter to do every day. Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com2tag:blogger.com,1999:blog-3346581093303059302.post-83704305130539699082015-01-12T05:30:00.000-08:002015-01-12T05:30:00.876-08:00Maddy's Surgery- A nightmare journey<strong>**Let me preface this post by saying if you are in anyway squeamish, please do not read this post! It's a bit graphic in description. Thank you.**</strong><br />
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<span style="font-size: x-small;">Hospital Wagon Ride</span></div>
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Don't get me wrong from the title of this post. Maddy's actual surgery went well. The post op complications were a different story. But let me back up. I wrote in an <a href="http://maddytothemax.blogspot.com/2014/12/testing-results-part-1.html" target="_blank">earlier post</a> about Maddy's sleep study results and the need for a follow up consultation with an ear, nose and throat doctor. <br />
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We met with a pediatric ENT at the Mayo Clinic where we've been seeing all the other specialists. He quickly determined from all the data and a quick exam that Maddy should have her adenoids removed and possibly her tonsils too. He also wanted to do an endoscopy, which is a camera scope, down her throat to make sure there were not any other obstructions blocking her breathing. We had a chance to do the surgery before the end of the year, but it was only with a week's notice. We decided to get it done as soon as possible. <br />
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Other than having to wait around all day because there was an emergency with another patient and starting the surgery much later than scheduled, the surgery went great. The doctor ended up removing both Maddy's adenoids and her tonsils. The scope revealed some interesting things about Maddy's anatomy that may need to be addressed in the future. The ENT did want Maddy to spend the night in the PICU at the hospital partially because of her age and partially because of her disability. <br />
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The night in the PICU was mostly uneventful, other than the fact that Maddy did not care to be cooped up in a room and wanted out. The problem with that was the fact that she was hooked up to an IV. In the end, the PICU nurses were of great help as they rounded us up a wagon and made it possible to walk the halls with Maddy being pulled around like a princess. Maddy did remarkably well drinking liquids after the surgery. She ate a little that night. She ate even more for breakfast the next day and kept drinking well. All this meant we got to go home the next day. <br />
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<span style="font-size: x-small;">Leaving the hospital</span></div>
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Maddy continued to do well at home that first day. When the second day at home rolled around, Maddy began throwing up. She could not seem to keep either liquids or solids down. We took her to the doctor that afternoon and she was prescribed something to help with the nausea. Those seemed to help, and by the evening, she was doing well again. I tucked Maddy into bed with me where she was sleeping post surgery. This was partly for comfort for her and partly to facilitate giving her medicine every four hours.<br />
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Then, at three in the morning, every parent's worst nightmare happened. Maddy woke up. I gave her another dose of Tylenol, as her previous dose had worn off. She asked for a drink. I gave her one. She took a drink, then began coughing. She coughed a couple of times and then rolled over like she was going back to sleep. <br />
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At this point, my mom came into the room. She had come to help out with Maddy post surgery. Mom said, "What's that on the pillow?" I couldn't really tell in the dark and asked Mom to turn on the light. There on the pillow was a bright spot of blood. Panic started to set in a little as I pulled Maddy to sit upright. Mom ran and grabbed me a towel to wipe the blood with. At this point, Maddy kept coughing and more and more blood was pouring out of her mouth. <br />
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We woke up Dave (as he was sleeping in another room). He must have been in a deep sleep, as it took him a minute to register what was going on. When he finally figured it out, he started the car. I threw on a coat, grabbed Maddy and jumped in the car. I just held her on my lap in the front seat. I was too panicked to let go of her. (Before I get lots of comments about not properly restraining her, let me just say it's an impossible thing to imagine blood pouring out of your child's mouth with no end in sight. Not to mention that our house is actually only three blocks from the hospital.) <br />
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Dave had called the ER ahead, so they were expecting us. When we got in, there was one nurse at the desk. She put us in a room and immediately called for help. Another nurse came in very shortly after that. They both tried to help us mop up the blood. Maddy had a large clot hanging out of her mouth. One of the nurses tried to pull it away, but it did not give. At this point, Dave was starting to panic. One of the nurses pulled him aside and I heard her telling him that if he couldn't be calm, then maybe he should step of the room for a minute so Maddy wouldn't seem him scared. That seemed to snap Dave out of it a little. <br />
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The bleeding did seem like it was slowing down, but it hadn't stopped. I totally lost track of time, so I had no idea how long it was from the time she started bleeding to the present. By this time, the doctor on duty came in. The nurses briefed him on the situation and he took a cursory look at Maddy. <br />
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I say cursory because He did not look in her mouth. He asked Maddy to open her mouth, but Maddy couldn't or wouldn't do so. She was just crying at this point because she wanted out of the room and out of the hospital. (as a side note, Maddy has never opened her mouth on her own for a doctor.) The doctor refused to look in her mouth by means of a tongue depressor. His reason was "There isn't a surgeon on duty and if her airway collapses, I can't do anything about it."<br />
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I was shocked! What did that mean? If my daughter's airway had collapsed on its own would he have done nothing to save her? I'm a lawyer. I get that there are terrible fears of malpractice suits these days. But what happened to the Hippocratic oath? What happened to doing what is medically necessary to save people? Why do we have a hospital with an ER if they can't do anything to help us there? <br />
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Luckily for my daughter's sake, the bleeding stopped on its own. By this point, the only thing that the doctor did do is to recommend we take her to a bigger town ER to be seen by an actual ENT to determine whether anything further was needed. We picked an ER and then waited around for one of those doctors to call back to our ER. While we were waiting, Maddy wanted down. She felt so terrible all she wanted to do was lay on the floor. I couldn't convince her to lay on the bed or to let me hold her. When we finally got the paperwork straightened out, we all got in the car and drove for an hour to the next ER. Maddy managed to sleep a little on the way there.<br />
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Maddy got checked out, and thankfully the ENT said Maddy was looking good. There was no sign of a clot and her throat looked nice and clear. I can't tell you what a relief that was. We got some additional advice about medicine and running a humidifier to keep Maddy's throat as moist as possible. <br />
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With a quick stop by Menards to buy a new humidifier (our big one had broken a few weeks ago) and we finally went home. We didn't get home until well after 8 in the morning. Maddy took quite awhile to recover after that. <br />
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She still didn't want to eat or drink anything. In fact, we had to call her surgeon, who prescribed her a dose of steroids. Those helped immensely. Within two hours of receiving that dose, she was drinking large quantities of water. The next day she was eating. <br />
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Maddy did lose a few pounds during this ordeal. She's made up for it in the weeks since by eating us out of house and home. I can't really tell too much if the surgery has improved her sleep or not. She got spoiled by sleeping by me during her recovery and so now we are breaking that habit again. She is back in her own bed, but has been waking up at night. She has been really restless in her sleep, so it's possible that she's either been dreaming or having growing pains. I've been trying to use the essential oils to help alleviate the restlessness as much as possible. We will have to see just how much she improves in sleep before the next sleep study. Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com2tag:blogger.com,1999:blog-3346581093303059302.post-17867994487101354932015-01-11T20:26:00.001-08:002015-01-11T20:26:27.020-08:00Testing Results Part 2I wrote about the results of Maddy's sleep study in a<a href="http://maddytothemax.blogspot.com/2014/12/testing-results-part-1.html" target="_blank"> previous post</a>. The other test that yielded results during Maddy's week at the Mayo Clinic was the neuropsychology tests. This involved several survey and play type tests where a physiologist watched Maddy interact with one parent (in this case Dad) and a trained worker over a video feed. <br />
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Most of these tests came up with typical or "normal" results. The one that did not was the<a href="http://research.agre.org/program/aboutados.cfm" target="_blank"> ADOS</a> test. In a nutshell, this is the golden standard for diagnosing autism. (click on the link for more info). The test (which is observation based) did show Maddy as being on the low end of the autism spectrum. <br />
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At first, this was a surprise to us, as every other doctor we have ever seen has told us Maddy does not have autism. But, after hearing the explanations from the psychologist, it made more sense. She told us that while she really doesn't think Maddy is autistic, she does have some of the characteristics of the disorder. Some of the score is based on communication. Maddy does not speak, does limited signing and really has a very basic level of communication at this point. That alone almost puts her as being on the spectrum. In addition, Maddy did do some level of "ignoring" and played in her own little world during the test. All of which can also point to autism. What doesn't point to autism in Maddy's case is her ability to make and hold eye contact, her interactions with others and her response to affection both in seeking and giving it. <br />
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At this point, I still feel that we don't have a true diagnosis, as both the medical doctor and the psychologist stated they don't feel this is really the only or the final answer. So far, it feels like we have more questions than actual answers to anything. We will keep carrying on to try and find more answers for Maddy. Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com1tag:blogger.com,1999:blog-3346581093303059302.post-49314562238344061102014-12-21T20:12:00.002-08:002014-12-21T20:12:30.909-08:00Testing Results Part 1It's been a long time since I've written. We've gotten a lot of Maddy's test results back from the Mayo Clinic. It's taken us a bit to process some of them. We got so many results at one time. Not to mention that life has been crazy in general lately. Basically, there are two main issues that came up out of everything. I'm going to break this up into two different posts, as there is so much information.<br />
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The most important result (at least to me) came out of the sleep study. The sleep study was a crazy experience to be sure. For those that have never done one, it is not pleasant by any means. The technicians literally glue 13 plus electrodes to your head. In Maddy's case, I had to hold her down in a chair so the tech could use industrial strength stinky glue to put these little metal electrodes on her head. I'm sure it hurt to have those things stuck down. With Maddy not being able to talk, it was that much worse, as she can't tell me if it hurts or if she was scared or confused. I thought for sure she would never sleep connected to all those wires, but when it was all said and done, she was so worn out from the whole ordeal that she was able to fall asleep. <br />
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When we got the results a day later, we found out Maddy has sleep apnea. She has both central apnea and obstructive apnea. My understanding from the doctor's explanation is than central apnea is the brain simply forgetting to tell the body to breath. Maddy had a few episodes of this type of apnea throughout the night. These episodes lasted only seconds and it is thought that she will eventually grow out of them all together. <br />
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Maddy also has obstructive apnea. This means that something is obstructing her breathing. She had an average of one obstructive apnea an hour. I didn't need the doctor to tell me that was a crazy number. The doctor noted that most of the time this occurs because either the adenoids and/or tonsils are enlarged and blocking the airway. He asked if we had ever had a MRI done. We told him Maddy had gotten one approximately 2 or so years ago and that it should be in her file. The doctor pulled up Maddy's MRI right there in the office. He told us he thought that her adenoids looked big already then. Yikes! <br />
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Long story short, the sleep doctor told us that we had to follow up with an Ear, Nose and Throat specialist. He also told us that he would recommend that Maddy have both her adenoids and tonsils removed and if the ENT didn't agree, he suggested we get a second opinion. <br />
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The results of the sleep study really made me feel vindicated. I've felt for years that her sleep was not normal. It took me that long to convince a doctor of that fact. Every time I told a doctor that I didn't think she slept good, that she wakes up a lot at night, that she's had ongoing issues since she turned 14 months, etc.; I would get brushed off. "She's just going through a faze, she'll grow out of it," were the phrases I most often got told. But here was proof in black and white that a mother's intuition is always right.<br />
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Hopefully, the ENT visit will finally address the problem. I know that the sleep issue isn't a diagnosis. It's not a cure all for everything that's going on with Maddy. However, we have seen Maddy make much faster development milestones when she's been getting good sleep. The possibility of her actually getting good sleep nearly every night has me wondering how much that can help improver her life, both at home and at school. Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com0tag:blogger.com,1999:blog-3346581093303059302.post-42148515444095991382014-10-22T14:42:00.002-07:002014-10-23T07:56:49.100-07:00Testing....1,2,3<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjebUntqHom8AGhyphenhyphen5WOCz75TzeT7z97qu1kt86DUW6Vx3HQL8qvTDy9Lysk5Tyw2cuLfhy-0KXdkCygig-WZbZCR6e_UqzoelRc6ZjXH-laqZAWbUPXN9PDvECBdp3ZP2qqj2ZLXGvyUK4/s1600/photo+(2).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjebUntqHom8AGhyphenhyphen5WOCz75TzeT7z97qu1kt86DUW6Vx3HQL8qvTDy9Lysk5Tyw2cuLfhy-0KXdkCygig-WZbZCR6e_UqzoelRc6ZjXH-laqZAWbUPXN9PDvECBdp3ZP2qqj2ZLXGvyUK4/s1600/photo+(2).JPG" height="320" width="234" /></a></div>
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We have begun another round of various testing for Maddy at the Mayo Clinic in Rochester. We've already had few appointments for various consults. So far we've learned not a whole lot. The tests with the most potential to yield some answers are still coming up.<br />
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We are scheduled for a neuropsychology appointment next week. I'm not entirely sure what all to expect with this one. I was told it can go all day or it could only take half a day. I do know it will involve several cognitive type tests as well as ADOS (an autism diagnostic tool).<br />
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We are also scheduled for a consultation to discuss doing gene mapping of some kind. At this point, all of Maddy's test have been normal. Gene Mapping may provide an answer, it may not. In fact, the geneticist told us that the chances of such testing turning up anything is most likely around 20%. Not very high hopes. He did however, state that if we are thinking about more children, it could tell us whether Dave and I are likely to pass something similar (if it is a genetic issue) onto another child.<br />
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I have a lot of mixed feelings about this topic. On the one hand, I do want another child. On the other hand, it is a little scary with not knowing Maddy's future. I can't say with any certainty that she will become "normal" (whatever that means.) I can't say with any certainty that Maddy will one day be able to live independently. I know that that's a long way off. Maddy is only four and there is a long time before that will be something that needs addressing. But all of those decisions come into play when thinking about another child. It's not a decision I'm ready to make right now. I went back and forth on whether or not I wanted to share thoughts on this topic. But I feel its a topic that doesn't get addressed very often, and because it is such a very personal decision for a family to make. I mostly wanted to share these feelings to let others know that it is okay to feel that way. It's okay to not know the answer and it's okay go back and forth on what the answer should or could be.<br />
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I will be keeping everyone updated as the testing goes. I am hopeful that maybe we might know something (anything) very soon.Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com1tag:blogger.com,1999:blog-3346581093303059302.post-32403633602461942752014-07-01T09:20:00.002-07:002014-07-01T09:21:21.995-07:00PicturesWe tried to take family pictures with a photographer the other day. What a disaster. Not the photographer. She was fabulous. Maddy has proven she hates posing for professional pictures before. The last time we took her, we got 3 or 4 decent pictures out of 40. None of the 3 or 4 had her smiling. This time, she screamed and/or whined for an hour and a half. We taking pictures at a nature trail. We got a few good ones there. Between Dave and I we were able to distract Maddy for short bursts and get her to smile. But the reprieve was always short-lived.<br />
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We decided maybe Maddy would be more comfortable at home in our backyard. We were wrong. The whining and freaking out continued. *sigh* I was convinced we would have nothing to work with. As she was leaving, the photographer said she thought there was enough there to work with. She also noted that Photoshop could work miracles and that most of those perfect pictures you see online are all photoshop. I knew she was probably right, but I still had my doubts.<br />
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I was pleasantly surprised when I got our cd of pictures. There were some fabulous pictures. In fact, I got a little crazy ordering canvases. I can't wait until I get them. Massive props to Tracie and Chris at<a href="http://www.thousandwordsphotomn.com/index2.php?v=v1#/home/" target="_blank"> Thousand Words Photography</a> for getting these amazing photos.<br />
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<br />Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com0tag:blogger.com,1999:blog-3346581093303059302.post-16899613514475173062014-05-29T11:58:00.000-07:002014-05-29T11:58:03.244-07:00Tears and ProgressI cried a little the other day. They were good tears, happy tears. We had a meeting with Maddy's teachers before the end of the school year. Her teacher wanted to show us what they'd been working on.<br />
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I admit, I was skeptical that it would be much more than we just talked about a few months ago at her IEP meeting. Maddy had been making some new sounds she hadn't before, but no actual words. She's starting to say something that resembles a combination of "Grandma" and "Grandpa." It comes out a little garbled, but it's holding promise. Maddy will also now sign "please." Other that that, however, I haven't seen a lot of new things going on at home.<br />
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I couldn't have been more wrong. Maddy was following simple directions. Things like "touch your head," "turn around" and "clap your hands" posed no problem for my little girl. I was already well on my way to fighting back tears at this point, when the flash cards came out. The flash cards were pictures of items. The teacher laid out three different pictures on the desk. "Maddy, where's the ladder?" her teacher asked her. She looked very carefully at each card before picking the right one. The tears did come then. I held them back as best I could, but a few still slipped out. This was especially true when I looked at my husband in wonder. He had, I'm sure, the same look on his face that I had on mine.<br />
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We watched as Maddy picked the right card time after time. I was so amazed and proud of my little girl. Even more so when her teacher decided to bring out cards depicting actions. She warned us that Maddy had never seen them before. Maddy obviously didn't do as good with them as the others, but she picked several of the right answers without any prompts.<br />
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For me, this is one more sign that Maddy will be okay. I really struggle with emotions on this topic. Part of me wishes that Maddy would be "normal" with "normal" development. I think every parent goes through that thought. Particularly a parent who has a child with special needs. I struggle with being okay with how Maddy is right now. A part of me hopes that she'll just grow out of this delay and suddenly catch up with her peers. I know that that's unlikely and that a more likely scenario is that eventually we will have a diagnosis for Maddy.<br />
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None of those emotions change the fact that I'm so proud of my daughter for overcoming as much as she has. She is the most delightful, happy, sunny child. Even if she doesn't really want to do things, she will do them. She might complain about doing those things, in her own way. But, the complaining never lasts long. She is so smart. When she is ready to learn things, it doesn't take her very long at all. But she has to be ready for them. I'm getting better at learning to be patient and let her learn at her own pace. Every time I see her doing something new she learned, that patience pays off.Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com1tag:blogger.com,1999:blog-3346581093303059302.post-63093450847267529622014-04-10T09:51:00.002-07:002014-04-10T09:51:13.929-07:00Maddy is Four!<br />
It's hard to believe that four years ago, we were blessed with the beautiful girl that is Madelyn. She's the light of our lives, and is growing up so fast in some ways.<br />
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I loved every second of being pregnant (except the morning sickness, which didn't last too long for me). I had a text book pregnancy. Not a single complication or issue arose. Even birth, seemed easy. I went into the hospital around 9:00 pm and by 4:00 am the next morning, our baby girl was born.<br />
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We've had many challenges raising Maddy, but I would not change one single thing about her. (Well, maybe it'd be nice if I could get her to stop banging on my cabinet glass just so she can get a rise out of me.) While it would be nice to have answers on why Maddy's development is delayed, I try to live every every day with her in the moment. I especially plan on enjoying today as we celebrate with friends and family our funny, happy, goofy, beautiful little girl, who's not so little anymore.<br />
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<br />Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com0tag:blogger.com,1999:blog-3346581093303059302.post-1773418819189246302014-03-31T10:01:00.001-07:002014-03-31T10:01:20.593-07:00Leaps and Bounds <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Maddy at her birthday last year.</td></tr>
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As Maddy's 4th birthday approaches in less than a week, I've been thinking about where Maddy was at development-wise last year. Even in the last few weeks, Maddy has seemed to advance leaps and bounds from where she was.<br />
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She has been interacting more and more with other children. Prior to this, Maddy has preferred to play on her own. It had me thinking that she might be on the Autistic Spectrum (even though dr.'s told me she wasn't). Lately however, she's been trying to hold hands with every kid she comes across. (Super cute!) She's also been actually trying to play with her cousins. Makes me teary-eyed just thinking about it. </div>
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Maddy's play has been going well in other areas as well. She's started to become interested in dress-up (for short periods of time). She's also been playing with more and more toys as they are intended. The other night, she put the Little People horse in its barn and was playing with the doors that make the horse sounds. She did the same with the cow. (Another tear-filled moment for me on that one.) </div>
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Maddy still has a long ways to go with many things. Talking and/or communicating using signs is still an issue. Feeding herself is still a challenge (with utensils). Sleeping at night is always a struggle. But more and more, it feels like the advancements she is making come faster. I am still hopeful Maddy can overcome many of these challenges. She is only just turning 4 after all. I am also just as certain that Maddy does have a specific disorder or syndrome, we just don't know what it is yet. </div>
Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com1tag:blogger.com,1999:blog-3346581093303059302.post-47149988397785214822014-03-05T12:40:00.002-08:002014-03-05T14:00:15.669-08:00Annual IEP Meeting<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: xx-small;"><a href="http://thegraphicsfairy.com/old-photo-back-to-school-children/" target="_blank">*Image Source*</a></span></div>
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We had Maddy's annual IEP (Indidudual Education Plan for those that don't know what that means) at school the other day. I will admit my feelings on these are mixed. I mentioned to my husband the other day that I feel like I don't even know what she does at school most of the time. Maddy can't tell us what she did that day ( even though I always ask her.) Admittedly, I don't call and talk to the teachers on a regular basis, so some of the fault lays with me.<br />
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That being said, the meeting went really well. We had some good feedback on how Maddy is progressing, as well as some honest discussion on things that need to be worked on. Maddy's speech pathologist had notes from many of their sessions. Those were huge for me. Reading over those little notes was a great way to stop and actually look at how far Maddy has progressed so far this year. For example, being able to climb the stairs. At the beginning of the year, Maddy couldn't walk up or down stairs just holding onto someone's hand. She was still crawling up and scooting down. Now Maddy is practically an expert at walking up and down the stairs with one hand on the railing and an adult holding the other hand.<br />
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The point is there has been progress. I get caught up sometimes wishing there was more progress, that it would be faster. But Maddy's always marched to the tune of her own drummer. She will not be rushed if she's not ready for something. I wish I could say the same! :)<br />
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I do feel the plan this year is good for Maddy. She is already going to ECSE (early childhood special education) classes twice a week for two hours. They are recommending she go to pre-school (or Discovery Time) two other days a week. That means she'll be going to school four days a week. I think that Discovery Time will hopefully help her socialize a bit better with other kids. That's already been seeming to get better and better lately. Time will only tell.<br />
<br />Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com0tag:blogger.com,1999:blog-3346581093303059302.post-40311856478467702014-02-03T15:08:00.000-08:002014-02-03T15:14:36.420-08:00Communication Conundrum<div class="separator" style="clear: both; text-align: center;">
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One of the most frustrating issues we face with Maddy is communication. Maddy is essentially non-verbal. The words she does use don't necessarily help us understand her needs and wants. We've tried to get her to use sign language for the basics. Signs for more, milk, please and thank you among them. Until recently, Maddy had no interest in using the signs. We could occasionally get her to use the sign for more, but only with a lot of frustration on everyone's behalf.<br />
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We've discussed going the picture route (having pictures of everyday items like a milk cup, etc for Maddy to bring to us or point to when she wants something). I'm not sure how successful that will be, as Maddy can't or won't point at things very often.<br />
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In the last month or so, it's like a light bulb has turned on. Maddy has been using the sign for more all the time. It's actually getting to the point that she uses the sign for more for everything, whether she's really asking for more, or just wants something in general. Sometimes I'm not really sure if she's signing or clapping, as she doesn't do the sign exactly the proper way. It's a start.<br />
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I can't tell you how frustrating it is to know you're child wants or needs something and not be able to figure out what that something is. Maddy still defaults toward whining to indicate she wants something, but there are times when the sign comes first. I have to admit, those times are pretty rewarding.<br />
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The latest communication for Maddy has come in the form of bye bye. She now enthusiastically waves both hands to say bye bye. She also blows kisses. Not without sound effects of course, but it comes out more as boo boo than smacking sounds. Now that she has learned the effect of said kisses, she tries to use them to get her way all the time. Which is adorable. (I might be biased on this one.)<br />
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*Here's a<a href="http://www.handspeak.com/word/" target="_blank"> link</a> to a great video dictionary for American Sign Language (ASL) if you are interested in learning more about signing.Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com1tag:blogger.com,1999:blog-3346581093303059302.post-61108468222373782692014-01-16T13:17:00.000-08:002014-01-23T14:37:25.769-08:00Maddy's StoryI have a beautiful little girl. Her name is Maddy. She is 3 and a half years old. The time has flown by. It seems like only yesterday we were just bringing her home from the hospital.<br />
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She was an angel of a baby, good natured and happy most of the time. She slept through the night at 2 months old. What a miracle.<br />
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But by 6 months, things were starting to seem not right. She couldn't quite hold her head up yet. She wasn't able to roll over. She was born an 8 lb baby, but now seemed rather small compared to other 6 month olds. At her 6 month checkup, the doctor confirmed what my mother's intuition had been saying in the back of my mind. Something is not quite right here. Of, course, I had ignored that voice as much as possible. Our family doctor had us go see a pediatrician.<br />
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We went to the pediatrician. He sent us to a developmental specialist. And so it began. Over the course of the next several years, we've had tests after test. Maddy has had blood work, MRI's. ABR's, muscle tests, and nerve tests. We've taken Maddy to Gillette Children's as well as the Mayo Clinic. Everything has come back normal so far.<br />
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Global Developmental Delay is what they are calling it for now. For those of you that don't know, that simply means "We're not sure what's going on with her." What it means for us is that Maddy has consistently been behind with every milestone in a child's life thus far. She didn't crawl until almost a year. She didn't walk until almost 2 years. She at the age of 3, uses 5 to 7 words consistently. Along with the delays, Maddy has only slept through the night half a dozen times since she turned about a year old.<br />
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She gets help from the school in the form of ECE classes, occupational and speech therapy. We have taken her to private OT and speech as well.<br />
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While we still don't know if Maddy has a particular disorder or syndrome, she clearly isn't "a typical" child. I am starting this blog because I wanted to share our struggles to get Maddy a diagnosis. Maybe sharing Maddy's story will help us find a diagnosis. Maybe it will help other parents facing similar challenges. Maybe it will help me cope through sharing. Whatever the case may be, I feel Maddy's story must be shared.Ericahttp://www.blogger.com/profile/01510546057606212049noreply@blogger.com8