On Having a Child with Special Needs: Part 1, Tuck's Undiagnosed Diagnosis

posted on: 6.27.2013


I have avoided held off on this post for a while now. It's not because I can't talk about Tuck's challenges, although I admit I don't always want to, but it's more there is sooo much to say and I'm not sure I can properly articulate it here. I'm going to give it a whirl though. I am going to break it up into parts. Talking about his challenges first, then my fears/challenges/love/ect next week. Most of you only know tiny bits about his history, so this seems like a good place to start...

Tuck has special needs. It's tricky when I tell people that, because the question that always follows, naturally, is "what does he have?". I never know where to start because so far Tuck is still mostly undiagnosed, although he is "diagnosed" special needs, if you can be such a thing. I usually tell people he was just born really early and is developmentally delayed. It's a quick way to change the subject (okay, I guess you can say I don't love talking about it:) Keep in mind this is usually to complete strangers though. I am more than happy, relieved even, when I can talk about /unload to a real friend about it. 
Here are the things we do know that Tuck has: Hypotonia, essentially low muscle tone that makes it hard for him to reach those typical milestones like Finn (physically or mentally). It's why he has all the baby fat he still does. It's why he is in therapy, and didn't walk until he was two (although everyone who I tell this to has a story of how their aunt's cousin's neighbors kid didn't walk until he was two and now he's an olympic athlete). It's why, if you see him, he looses his balance easily, falls over often, and is freakily flexible. It's why if you hold him he doesn't support himself, and flops into your arms (makes for a really good cuddler). Tuck will most likely always be in and out of therapy to keep his muscles and brain stimulated. He is also very developmentally delayed with his fine motor and speech skills. Tuck isn't talking yet. We also worked all year with him in therapy on being able to stack a few blocks and/or drop a token in a jar. He just recently (as of a couple weeks ago) started stacking and lining items up in a row!! It is so exciting to see. Not only for his development, but also because this is the first time Tuck has played with something with purpose, the way the toy was intended to be used. Usually toys just get tossed around the house, or go in his mouth. I'm so happy about it! We will be tackling his speech head on this fall with new therapists in Indiana.
 Hypotonia is also, technically, not a diagnosis. I know that's confusing. It still confuses me. It's actually a symptom, a sign, of something else bigger going on, but it can be very hard to diagnose. That's what we're still trying to figure out. About a year ago we met with a genetics specialist who ran a boat load of tests on Tuck, thinking maybe he had pin pointed it, and although what he thought it might be sounded like a terrifying syndrome, I was a tad relieved to at least just know. It ended up not being that, or any of the other 100 syndrome's he tested for. He warned us that it could be 1 of 1000's of syndrome's and we might never find out. I gave it a good go, and for a few months took the twins to so many doctor appointments it felt like we did nothing else. Then I was done. Completely burned out. The unknown, in this case, is miserable. At least for me. I feel really unprepared, like I don't fully know him, and what his needs are. I wish I could know more about what to expect in the future for him. It's SO hard to not know what to expect from his future. Will he go to a normal school? Will he be able to play any sports? Will he need a wheel chair at some point? Will he be mentally capable to keep up in the world without us? Will he be able to attend college? It's really a day at a time with him. 
He also has Asthma, and Tracheomalacia, making it harder for him to breathe. If you are around Tuck you will always hear a slight wheeze when he breathes. His immune system is weak, so he is frequently sick, and gets awful cough attacks. Because of his asthma and trachea thing, what would be a regular cold for Finn or Tate, means breathing treatments, and daily steroids for Tuck. This last winter he was only hospitalized twice, which was great! The previous winter, before he was on the daily steroids, he was hospitalized 6 times. It was the longest, hardest winter of my life, and his too I'm sure:( 
Tuck also had brain bleeds during birth, which we won't ever really know how exactly that affected him, only that it did affect him. He also has new symptoms that we're noticing as he gets older, and as odd as it sounds I'm happy to know more about him, and have more to tell the doctor at his next appointment. Maybe this new information will help to diagnose him. The saying "No News is Good News" does not apply here:)
It's a funny thing not having a diagnosis. I have noticed, and myself included at the beginning, people want to believe no diagnosis means he isn't special needs...yet. I had a couple lumps in my throat the first couple times I said that out loud. I mean is he? Well, if he is, then what does he have? Then we got a letter from the state of Michigan health saying that we qualified for free such and such health care for our "special needs" son because of all the extra "special care" he required, and then we got a free home therapist, and then it was real.

Part Two: My fears, thoughts, one is not like the other... next week!

*I'd love to hear your thoughts, especially if you can relate in any way.

39 comments:

  1. I can't relate, not at all. But I love you, your sweet family, and the way you love so unbelievably entirely. It's amazing to see (via IG) Tuck meet milestones you wondered if he would meet, and watch as he develops into his own little person.

    I laughed about the olympic athlete comments you get. I sometimes think as a society we have an obsession with excellence as measured by exterior standards and lose touch with what REAL success and happiness are, and what brings them about. Having a life full of love, service, and surrounded by family and friends regardless of any outside measurement of success is far more important to me than having my children (or myself) become stars in one way or another.

    One day at a time is all any of us really have:)

    Can't wait to see you this summer...and finally meet your special boys!

    xoxo Miranda

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    1. I love you! Your perspective is right on, and that's just how I feel! Because really, I don't know what I would do if my kid couldn't become an Olympic athlete:)

      You are so articulate Miranda, thanks for your kind words, and love, always. xoxoxo

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  2. My youngest sister suffered from a set of symptoms but did not get a diagnosis until she was a teenager . She ended up being diagnosed with Noonan's syndrome. Many of Tuck's symptoms fit that same diagnosis, but I'm guessing he was already tested for that?

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    1. Thank you! I will have to ask my husband if that was part of the screenings he went through (they were all grouped together), but I'm so happy to hear of anything that anybody might know about.

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  3. Chelsea, You are a brave and strong woman. The way you write is so effortlessly to read. I can really hear your voice through this. Thank you for sharing this about Tuck. I am a believer that opening up about things that can be challenging yet wonderful at the same time, can build strength in yourself. Basically what I am saying is that there is strength in showing your emotions. I love this post. I agree whole heartedly that the unknown is torture. What should make you feel good, and I am sure it does; is that you are on it. You are doing whatever you can for him. You are trying to find out who he is and what he needs. And you will, mostly undoubtedly, get more of the stories about other peoples cousin's son. I think people do that to push away the emotion they feel when you open up to them. People did that to me when Elsie was in the NICU. Almost as if they needed to downplay what I was going through. I hate that people do that.
    It is hard to learn how to understand each child differently, especially when one has special needs. I hope that you can get more information about your darling boy. He portrays such happiness through all his pictures! And I am Tuck's fan!

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    1. I completely agree Abi! I do have a hard time opening up sometimes (especially lately is seems) but it feels really good when I can. And I think you're spot on about people's reactions with the cousins brothers olympian comments. I totally know it's all to make me feel encouraged, I totally get why they do it. I know it's uncomfortable to hear of someone's challenge's and people want to just "fix" things right away. I think that's most of the reason why I don't like talking about it with people I don't really know... because I know it makes them feel uncomfortable.
      Thank you always for your sweet words!!

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  4. I am a special ed teacher at an elementary school. I work with children in a very wide variety of educational settings with children with a wide variety of diagnoses- we often call them "labels". A label can be good. It gives you something to say when people ask the hard questions, and in the world of education it helps ensure that we have the resources we need to provide the best educational experience your child could hope for.

    But, in terms of teaching children, I try to avoid the labels. I hope to see a child based on his likes and dislikes, his strengths and areas for growth, the things that make him laugh. Being a long time reader of your blog, I have to say that you seem to have nailed this loving approach. You know how to comfort Tuck, you know how to help him celebrate the things he does well, and you've clearly taken steps to help him improve where necessary. Life without a label can be hard, but regardless of whether or not you have one, you are a great mama and Tuck is a sweet boy!

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    1. Oh, you just made my day!! You are right, in so many ways! Beyond only a medical standpoint I agree wholeheartedly! I LOVE that you teach that way, and see your children that way, and that's exactly the kind of mother I want to continue to be for all my kids. I don't want to put labels on any of my children. In hindsight, I think not having a diagnosis yet has maybe helped me to better do that. Thanks for pointing that out to me. It's definitely a silver lining and something I want to continue doing!

      As I open up more about Tuck, I'd love to hear any more thoughts or suggestions you have along the way! I appreciate what you've shared so far:)

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  5. My name is Stefi and I went to highschool with Eve. First off, I love reading your blog because you seem like such a genuine and loving mom (with incredible style!). I am a speech-language pathologist working with toddlers with special needs in DC. I appreciated this post because it was a good reminder to always keep the parents hope/fears/concerns/joys in mind when working with their children. I don't know what its like to have a child with special needs, but I do know what it's like to worry about and hope for them. I'm so proud of you for celebrating Tuck's victories of playing with toys. This is huge!!! Don't let anyone diminish his accomplishments! I believe the biggest thing you and your family can do for Tuck is to be his advocate. He needs you in his corner. Answers will slowly come and Tuck will continue to have even more victories I'm sure. I could go and on but just know that you and your family are doing a wonderful job. Don't give up and thanks for the post! Also Tuck is adorable and I wish I could work with him :)

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  6. I am 33, married, with four kids ages 6-6 months. I am an undiagnosed kid as well.
    When I was born they thought I had downs syndrome. But that wasn't it. They never figured out my symptoms and I was tested for EVERYTHING. The closest I think they ever got was narcolepsy. You would never know I struggle from the outside. I do everything "normal" people do. I just struggle at it all. And that is normal for me.
    The hardest part is my husband. I think it's hard for him to believe I have real struggles because I seem fine enough. I think he thinks I'm a bit lazy even though I have soooo many dr bills to prove this isn't a game. I think the worst part of being undiagnosed is just that, people not thinking your struggles are real because they don't have a name. Sometimes I even wish the lab work would come back with a big fat "tumor" or "cancer" on it just so I could yell back at the world "SEE!".
    Anyway, good luck. I hope you find a name for it all soon.

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    1. Thank you for sharing, and even though I don't know the severity of your symptoms, it does bring relief (and inspiration!) to know that you've worked through it and made a good life out of it! That's what it's all about. I do completely understand your frustration though with not having a "name" to call it. That would be incredibly challenging in your case to have to prove your challenges constantly. It can feel very lonesome at times, when others might not know what you're going through. For the record though I hope you don't get a big fat tumor:)

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  7. You don't know me but I love your blog and check in from time to time. I know Dru and Tyler. My sister in law and brother in law are kind of on the same track as you guys just a few years ahead. My brother in law started med school in Grenada, then they were in Detroit (lived in Grosse Pointe) and now he is doing his last year of residency in Indianappolis in peds and psych. They live closer to downtown Indy but I think you might run into them. They have four kids and the third has Downs Syndrome so you might run into her where he does therapy. She's in Salt Lake for a few weeks this summer but I'd love to connect you if you're interested. They're last name is Orme. My email is below.

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    1. Hi Cort! I have heard Dru talk about you! Aren't you a designer, or painter or something awesome like that? I remember you coming up in conversation about Pallet- the restaurant in Utah that I love. Maybe not? Anyway, thank you so much for commenting and introducing yourself:) That is kind of crazy how similar your brother in law's path has been to ours. I would be curious to talk to your sister in law actually if you wouldn't mind connecting us. I haven't even started researching therapy's yet for Tuck (or even a pediatrician) so it would be nice to get some recommendations from her. I will also be in Slc next weekend, for about 3 weeks, so it's not a huge rush. I'm also so curious to know how they scored a place close to downtown!! We looked so hard, but found the schools to not be very good. I'm curious to hear how they like it. Thanks!!

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  8. I wish I could better understand your pain and frustration in wanting and knowing the very best for Tuck now and in the future. But what I just read is your really super admirable effort and passion and love and commitment. He is so damn lucky to have you as a mom who sees *him*. I want to parent just like you so badly. I think you're amazing, your family is beautiful and I really hope for some relief and insight and progress for little Tuck who is so lovable.


    *We went through a year+ of diagnoses and then group, speech and occupational therapies with Finn in california too, although on an entirely different scale. It's so exhausting (that serious mama drive to do my very best to give him the very best). You're a strong one, Chelsea!

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    1. Ditto to the parenting Kelly. I also look up to you in that way so much! Thank you so much for your sweet words, really. I didn't know you also had a similar experience with Finn? I'd love to hear more about that if we get a chance to get together this summer. I'm emailing you back today about Sugarhouse:) xo

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  9. You're so strong for sharing, Chelsea! Of course I've always wondered but never bothered to ask because 1. it's your family, your privacy, and if you wanted us to know you'd tell, and 2. because Tuck always looks so happy and I know he is SO loved, it doesn't matter his official diagnosis. He is such a little cutie and he's definitely inherited the strong and determined will of his parents. Looking forward to the next part. xo Angela

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    1. Thanks Angela! You're totally right! It's not completely obvious when you see him because he is SOOOO happy truly all the time. It's really so easy to be his parent! Thank you always for your sweet words!

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  10. Gina Morgan6/27/13, 3:21 PM

    Hi Chelsea,
    Charlotte is also one of the "lucky" undiagnosed diagnosed syndrome kids. The first year of her life was pretty miserable....every dr we visited gave us something new to worry about, yet didn't hold the answer key. I have schlepped her to weekly (often 2x/week) OT/PT visits since she was 4 months old. She received a cochlear implant at 18 mos, so we then added weekly visits to Ann arbor to the list as well. Poor grace spent much of her year 3 in drs offices :(
    Now she is almost 6 and we receive most of her treatment under the umbrella of cerebral palsy (which is basically what they give anyone when they don't have anything else to give them). She is profoundly deaf, hypotonic, congenital scoliosis (missing parts of her vertebrae), vertical nystagmus (crazy eye movements) plus a few other random things. Her IEP for school is deaf/blind (yikes!!) ~ BUT she had an AMAZING year this past school year. We use sign language with her and her communication exploded. She is sassy and silly and almost never in a bad mood. I get your sadness over not knowing your child, but things will get better I promise. I used to lament about not knowing what is up with her, now I care a lot less and believe that it means the sky is the limit for her. She doesn't fit in a box with parameters.....we're going to make it up as we go along. And hopefully in your new home you can find a dr who will believe that too.

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    1. Gina, you are one I wish I could have gotten to know more in Michigan! Thank you so much for telling me more about your experience. We have so much to relate on, I just wish we could meet up for coffee. What did you mean by IEP?
      I love your outlook and not wanting to fit her into a box and I feel the same about Tuck, about all my kids!

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    2. An IEP is an Individual Education Plan that schools use to determine the amount of support a child will be given. This is a legally binding "contract" that will hold teachers and therapist accountable to meeting the needs of your child in a school setting. IEPs will contain information on the amount of time your child will receive individual support and learning goals and objectives. When Tuck enters school for the first time the school will evaluate his needs and then meet with you to establish the formal plan. The IEP will cover speech goals as well as academic goals and if he receives PT and OT those goals will also be included. I teach first grade in Northern Indiana. You picked a great school system for your children to be a part of. Carmel schools may even have a early special education program that you might want to look into. My school system does and this allows us to meet the needs of our children at an early age and makes it easier on the parents when the child is ready to transition to elementary school. The best advice I can give from the education world is to stay aware of everything that happens at school and to ask lots of questions. I wish you all the best and welcome to Indiana!

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  11. It's so neat that you are sharing about Tuck. It must have been so hard to put it into words and out there for all the world to see. My sister is diagnosed, but it's a 1 in a million type of diagnosis, so there really wasn't/isn't any info out there to help my mom. I can't even imagine how hard it is to be a mom with a special needs child, especially an undiagnosed one. But I'll tell you what I do know- what it's like to be a sibling of a special needs kid.

    Lindsay is my favorite person in the whole world. We facetime every day when she gets home from her day program. When I lived in Utah, I would pick her up once a week and we would go on adventures. Like the grocery store. Because even the simplest tasks are adventures with her.

    She didn't walk till she was 3. She will never progress past a 3rd grade reading level. She has many things that limit her- physically and mentally. I remember countless doctors visits, xrays and specialists. They talked my mom into putting her into the the Head Start school- but she started to regress. My mom fought, and she got a program opened up for her and other special needs kids in our elementary school. She graduated with her class.

    She remembers things from when she was very young, and when she's particularly lucid she will recount these memories and they give my goosebumps and make my cry. It's incredible. One time in church she went up to bear her testimony and she talked about Jesus, and how much she missed him. I'm not religious, but Lindsay is proof to me that God exists.

    Having Lindsay as a sister has made me a better person. Growing up, I never thought of her as "not normal". Other kids would ask "What's wrong with her?" and I was puzzled, because there was nothing wrong with her that I could tell. I think she does know that she's not quite like other people, but she doesn't care. She doesn't feel limited, or that she's missing out on things. She is ALWAYS happy, always positive.

    One time, I made a birthday cake for Benson (Angie's son) and just as I was finishing up frosting the cake, I tasted the frosting. It tasted like garlic. My whip cream had gone bad. I freaked out, and went into the other room to cry.

    Lindsay came in, put her arm around me and said "It's ok Jessica, it's ok." And I said "but it's gross!" And she said "but I LOVE cake, and I LOVE garlic! It's not gross to me!"

    I am so grateful that I have her in my life. She makes me feel better, she keeps me laughing, Santa and the Easter bunny will be real forever, and having that innocent kid imagination spirit when anything is possible around me is so, so nice!

    So don't worry too much about Tuck's limitations and what he may never do, because he'll never miss them. He won't care. He'll always have a smile on his face even during the tough times. And don't worry about Tate and Finn missing out on things either, they love him for him and they understand on a much deeper level that he needs more attention than they do. My dad still to this day apologizes for us (my brother and I) not getting all the attention we deserved as kids. But we don't feel like we missed anything, we have Lindsay, and that's what's important.

    I think you are so lucky to have Tuck in your life!

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    1. I loved this insight Jess! It made me teary. xo

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    2. Oh my goodness Jessica, this is so so touching! You completely have the perfect perspective, and this whole account makes me so happy, and extremely grateful. I already know how lucky I am to have Tuck, I never once have felt not 100% blessed to be his mom, but your words have made me even more excited to have his outlook on life affect our entire family like it did yours! Thank you for sharing. xoxo

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  12. Chels... Thank you for opening up and sharing. This post and the comments make me weepy. I am quite certain that the fact that you are Tuck's mama is no accident! He is so lucky to have you as his advocate, cheerleader and fearless protector. You continue to inspire me on so many levels. xox

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    1. I am definitely the lucky one, but thank you so much Kim! xoxo

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  13. I LOVED reading this. Thanks for sharing your story. I can relate on so many levels. I have two kids with special needs, and two without. I am learning one day at a time that my kids are writing their own stories. My daughter with cerebral palsy was told that she would never walk (she is running right along with her twin sister). She was also told that she will never do this or that, but she is constantly proving people wrong. My son is four and does not speak. I cringe every time someone tells me, don't worry I know a friend of a friends distant relative that didn't speak until he was seven, blah blah blah. Ignore them. You are your kids best advocate and you are doing such a perfect job seeking out the things that they will need to be happy. You are a rock star! Good Luck

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    1. How amazing are your kids!! So cool that your daughter just keeps beating the "odds"! Your end comment made me laugh too, I'm so glad you can relate. You sound like a rockstar too!! Thank you so much for sharing your experience and making me feel like I am okay feeling how I'm feeling.

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  14. I can relate to your "story", and really enjoyed reading your perspective. My 2.5 yo son Tommy (only child) has Cerebral Palsy, caused from a stroke in utero. I had a healthy pregnancy, but abnormalities were detected with my son right after birth, thanks to some amazing nurses. We were so shocked and scared to hear that our precious new little bundle had suffered a stroke! He was in the NICU for a week, and is/was healthy otherwise. Doctors told us he would have significant developmental delays. We were devastated.
    We got him started in physical therapy pretty early at 6 months, and he continues to receive PT and OT twice a week.
    Tommy has hemi-plegia, which is weakness on one side of the body. His right arm and hand are most affected. He never crawled, as he didn't have the arm strength to hold himself up.
    Despite the doctor's predictions, our strong little man started walking around 19 months. He has been through hundreds of evaluations by doctors, state run programs, the school district, therapists, etc. and he is now in the "normal" range for speech, gross motor and cognitive, with delays only in fine motor. He was lucky enough to participate in the Early Start Program trough our preschool. It's a special education pre-pre school program for kids under 3. It has been so wonderful for his development, and has helped us learn the fun and creative ways to help him learn. if you have something like this in your district, I'd highly recommend looking into it.
    I am so proud of my little man. He has taught me so much over these last few years. He is the sweetest, most outgoing and happy little boy. He brightens every room he enters. He is mostly blissfully unaware of his disability and can almost always find a way to do whatever he sets his mind to.
    I still struggle a bit with those judgy eyes at the park, especially those ignorant people who point out the obvious to me - as if I didn't realize my son wasn't using his right hand! I would much rather explain to people why he isn't able to climb and play like other kids, than have them stare and wonder. I have walked out of situations in tears before. My husband and I have had our breakdowns, asking
    why?? But we always come back to appreciating what an awesome little kid he is.
    Naturally, as mothers we worry. I worry about his future, what he will and won't be able to do. Like you mentioned about your cutie, will he be able to play sports, drive a car, go to college?
    I think the most valuable lesson I have learned from my son is that we all can accomplish whatever we set our minds to. I'm confident that our boys will thrive in whatever life they chose for themselves... especially with all the love and support from family and community.
    By the way, your kids are so stinkin' cute!
    xx, Best wishes!

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  15. Hi Chelsea-
    What a beautiful, real post! Your words brought back feelings that I had pushed aside and I want to thank you for that. My little Dax has an undiagnosed condition(s) that we may never nail down. For the first 3 years of his life I killed trying to find answers and figure out what went wrong or what he has. He too is hypotonic and has been diagnosed with dysarthria, but that is just tiny bits of information regarding a big picture diagnosis. For so long, I was so focused on finding out what was wrong that I forgot to focus on what was right. It's a tough reality to accept that the dreams and hopes that you envisioned for you child have in some ways died. With that said, it has been a miracle in my life to be able to realize that my job is to help Dax be the best that he can be and if this means hours of therapy, hours of sleepless nights giving treatments and endless pushing and motivating, that's my job. If he can be independent as an adult, wonderful. If he can't, that is wonderful as well and I'll be there with him. What I've learned so far is that everyone has baggage, some more visible than others. Keep up the good work, mama. Your doing beautifully, even if its extra work and the rewards are few and far between. Emilee Burbidge Cannon (from the 7th ward)

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  16. I can't relate, but my friend Tristin can! Her little guy Jayson is 18 months old and has special needs, but no diagnosis. Maybe you'd be interested in connecting with her. Her blog is:

    http://littlejsjourney.blogspot.com/

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  17. Hi Chelsea,

    Although I cannot relate personally, I had a friend who went through the same thing. In their case, their daughter was missing a partial chromosome. It took a long time before she had any answers. She was passed around specialists, and clinics until they found what they were looking for. I am not sure those were part of your genetic testing or not but the symptoms sounded a bit familiar.

    Mother to mother, i hope you can find peace in the days ahead - diagnosis or not, your strength is inspiring! I am sure no matter the future obstacles, Tuck will continue to be amazing. Best of luck in your search.

    Tabatha
    http://ourbestcasescenario.blogspot.com

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    1. One last thing. I forgot another similarity; my friends daughter is also a twin to which the other twin is completely unaffected. Hope this helps a little.

      Wishing you all health and love,

      Tabatha

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  18. Hi
    Thanks so much for sharing. My son was misdiagnosed at birth with Noonan's Syndrome. After a lot of searching for answers, it has turned out to be Soto's Syndrome. I mention it because some of the physical features are similar...maybe worth looking into if they haven't already. The kids with Soto's that I know have hypotonia and developmental delay. They are also sweet, affectionate and cuddly like your little guy!
    Hang in there, it gets easier, I promise!
    Mich

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    1. Hi mich,

      Yes, it's hard because hypotonia can be a part of thousands of syndrome's. Tuck was tested for sotos and he doesn't have it.

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  19. chelsea, you're courageous for sharing all of this. i can't imagine how the unknowns can keep you up at night. wishing you answers and health and all good things for all you horsleys, and especially that smushy tuck (who is the smushiest and i suppose that is the silver lining in all of this?! i looove smushy babies.)

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  20. Chelsea, thank you so much for sharing your story for us. I wish I had some insight to share, but all I can say is this-- you are an amazing, courageous mother to your precious children. XO

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  21. Hey Chels... So this is super late, but I've been thinking about it every day. I had no idea that you were going through all this!!! At least on the surface, everything looks so dreamy, so at least you've got that down. All I can say is that Heavenly Father gave us our kids for a reason. And the biggest reason in my opinion is not for their own good, but to strengthen us, and make us better. All these long responses you got, and now i'm feeling intimidated, but just know that it's been a pleasure to get to know you through this platform, and you've been such an inspiration to me. Your kids are so lucky to have you, and YOU are so lucky to have them! Tuck is awesome, and is so blessed to have someone battling for him. The fears and insecurities you feel are TOTALLY normal. I'm right there with you. kisses from Abu Dhabi. xx

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  22. So I've been out of town a month and am just getting caught up on my favorite blogs but even though this is old I still wanted to comment! Thank you for sharing your story. It really touched me, most of all that no matter what our children "have" or don't have or whatever struggles they face, we love them as parents so so much it's indescribable. I don't think I understood that until I had kids. You are doing an amazing job. you seem to be taking every step along the way gracefully and courageously! It's inspiring! xx


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  23. Catching up on my blog reading tonight and I'm so touched by this post and the comments as well. This is one of the ways the Internet is wonderful. So happy to know you and your beautiful family through it. Thanks for sharing bits of your life. And please always, always share photos of that beautiful, happy boy. :)

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thanks for stopping by, please be kind.

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