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displace

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Posts posted by displace

    Tell me about VSD heart defects

    in The Chat Board

    Posted · Edited by displace

    3 minutes ago, Lady Florida. said:

    That's interesting. The cardiologist told dss and ddil that they want to do it between two and five months, but no later than five.

    I think it’s all relative, with surgeon and baby and size of VSD.  Operating on a 6 lb baby vs a 10 pound baby means the heart and chest is easier to operate on.  But if the hole is large, too much exchange of blood flow causes heart failure and lack of growth.  I’ll try to research ages of recommendations.

     

    eta- lots of variation of age for recommended surgery, from months to years, depending on mostly size of VSD and how patient is doing.  Most moderate to larger ones seem to be done at less than one year.

    • Like 1

    Tell me about VSD heart defects

    in The Chat Board

    Posted

    Most VSDs that are larger than small will need to be repaired.  A lot of repairs can be done by catheter (plugs and such) that don’t require open heart.  They like to wait until baby is older and bigger as the blood flow isn’t compromised much unless the hole is very large.  As baby grows and heart grows, the hole doesn’t grow and is relatively smaller, afaik.  Get a perinatologist involved and deliver at a children’s hospital attached with a Good NICU, JIC. VSD are common-ish, so seen regularly.  It may be a different scenario in higher altitude but IDK.

    • Like 1

    Complaining Strategies

    in The Learning Challenges Board

    Posted

    2 hours ago, nwahomeschoolmom said:

    I have no advice....but just wanted to say "I get it"...My son is very similar.  Sometimes things that seem "normal" for other kids, and may be "normal," are received differently when there is just SO MUCH we deal with.  An abundance of "normal behaviors" that wear on us, and make us need to employ strategies to cope as parents.  

    Lately, I have been thinking of a special needs girl who went to our previous church.  I don't want to say what she had for their privacy, just in case.  Everyone loved being around her and she was just so sweet.  I was lucky if I was able to chat with her for a few minutes each week.  Now I get it, while she was so sweet and adorable to us, and she is, it was certainly not easy for her parents.  Everyone thinks my son is cute and quirky, and overly active of course, and loves their time with him, but I don't think many people understand how TAXING it is to be the parent of him.  I think I am at a place where I am finally glad they don't see exactly what I see, for his sake.  But its not easy.

    I'd probably try all of the strategies you are trying to see if any worked. Also, "complaining, whining behavior" is something my son would lose stickers for which is linked to a reward/consequence...so I might say, "The first couple times you were sharing how you felt, but now you are whining/complaining, which is not okay.  If this continues, you will lose a sticker."

    My son does this too...He is also never satisfied with attention and activities no matter how much he gets.  I went into his room tonight to have a few minutes chat with him to end the night on a good note, and of course, he kept trying and trying for more attention and not respecting my boundaries I had to leave on a bad note.  I said, "Sure, you can show me this one last thing before I go." But he just can't accept that...without seeing if he can guilt-trip me into staying longer or without whining.  Sometimes it feels like why do I even bother with anything at all, it will never be enough.  

    Almost exactly this sums up some of my emotions.  DS is awesome but always ON, and is an extrovert.  After 14 hours each day for years I’m feeling a bit drained.  I’m an introvert and also have medical issues that cause days of being unwell and then my patience is limited, etc. Frequently, I have other stresses too.  I try to be cognizant of not taking on too much so I can’t handle everyone and the situation.  And I try to empathize and remember what being a kid is like, and how we all have our challenges.  I do warn that behaviors that make me regret doing fun things will lead to decreased opportunities for fun stuff in the future, then I feel a guilt backlash that he’s just trying to talk with me.  

    I think I probably accept too much behavior that wears me down and now I need to curtail it with some more obvious expectations.  

    DS is usually sensory seeking but has a few sensitivities as well.  We’ve checked for retained reflexes and some therapies help, like massage, but I’m not doing that in public.  We need to think of more plans to help him stay in the green zone by himself.  Most plans that we think are ok, don’t work in the moment.  And I’m usually off in the yellow zone myself, or worse and can’t talk either.  ☹️

    So tricky!  ? Every day we both try, and I’m grateful.  It’s hard but worth it.

     

    Dr. Hive - scoliosis?

    in The Chat Board

    Posted · Edited by displace

    As long as they took “scoliosis” X-rays, even small degrees of curvature are measurable.  There doesn’t tend to be treatment offered until a certain angle of curve.  A surgeon is the consulting doctor if a back brace is recommended, or surgery, or nothing.

    Also, a tape measure can be used to actually measure leg length vs a feeling.  Shoulder height can be marked and measured as well, or at least compared when upright.  And an easy lean-over-test will show uneven shoulders (maybe that’s what you meant?).  Just the lean over test, if positive, is a sign of scoliosis, but an X-ray determines if treatment is necessary, afaik.

    Complaining Strategies

    in The Learning Challenges Board

    Posted

    I do think it can be normal to an extent.  I do think partly the comments are very prolonged to be called normal, and partly how his body is (more physically sensitive for instance).  I can try distracting techniques and reflection, too.  I’m unable to ignore when anyone is talking to me, which I think is part of how my brain works.  ? 

    Complaining Strategies

    in The Learning Challenges Board

    Posted

    I'm looking for some concrete limitations or strategies for when DS is complaining.  An ex: we were walking for a few hours at an amusement park.  At the end of the day there were a lot of comments about legs/feet tired, etc.  Some of it was complaining.  Some may have been just wanting to talk about or discuss it.  However, DS can talk for a while and after only a couple comments I'm very impatient to listen to any sort of frustration as we were just at an amusement park and my perspective is a lot different than DS. 

    I'm considering allowing two of the same comment (that I consider a complaint), then needing to switch to only positive comments.  Or perhaps trying to have a conversation would be ok (in this instance, discussing how we are not used to walking for so long so it makes our body feel tired).  I'm very open to DS talking to me about anything, but after a bit of the same thing I can't allow it.  This happens often for many different activities that I would consider privileged.  There is also groaning, moaning, etc, for undesirable chores (most subjects), but is getting better this school year.  So, I'd rather the speech/discussion than the verbal noises, but I need to limit it.  Any resources?  DS also does much better with outside resources (videos or books) vs just hearing from mom, but rules or other suggestions would help too.

    Interactive metronome app

    in The Learning Challenges Board

    Posted

    If there’s a way to give feedback, that would be good (using some input for sound, maybe?).  

    Features: videos to show what is expected (not just clapping but stomping, clap plus stomp, alternate hand to foot activity etc as it gets more difficult), after video to show/explain, a game type goal - shooting spaceships, making food, sports activities, animals racing.

     

    I think brain beat(?) Is the at home version for IM, maybe some ideas from there. And marketing to ADHD and other kids would have enough of a population (link to studies that show benefits). 

    PSA: Roundup found in Cheerios, Quaker Oats and other ceraels

    in The Chat Board

    Posted · Edited by displace

    One issue with relying on scientific evidence is: if the evidence points to being harmful (good studies), it’s relatively safe to assume it’s harmful.  But there are lots of studies that haven’t been done so the scientific knowledge is lacking.  How can we study long term effects of chemicals that were just invented recently (within a human life cycle as well as multigenerational)?  How can we study effects on small percentages of people if not everyone is being studied?  How can we study chemicals in our bodies when there aren’t easy or reliable tests for them?  Or when we still have a huge medical need in our country wrt access and insurance and medical coverage?  Are independent researchers continually studying effects of chemicals years later on people?  Unless a pesticide or chemical has immediate and obvious effects on the body, will those side effects be known before use?  How many decades will they be used before problems are found?  A lot of cancers take decades after initial insults start to happen and research after decades is not easy.  

    Just my thoughts.  I’m not a pesticide scientist.

    • Like 2

    Gene testing - MTHFR

    in The Learning Challenges Board

    Posted

    To the OP: if there is a known genome difference, I’d take the results to a geneticist if you have insurance (any PCP will write a referral), and let them sort it.  The insurance will now cover lab tests (hopefully), because there is a known genetic diagnosis.  The geneticist can order a billion confirmatory tests and variations.

    Handwriting Help!

    in General Education Discussion Board

    Posted

    35 minutes ago, Mama Duck said:

     

    Thanks. That is a great idea. I’m going to talk to her teacher at school and see if she can use it at school as well.

    would you recommend using the normal thin popsicle sticks, or the thicker ones? 

    Thick.  If you don’t have buy in to use it from your daughter and the teacher, it may not happen.  IME, the teacher and the child will both likely forget, even if it’s a formal accommodation necessary.  So try to get your daughter to agree to use it, and also the teacher’s enthusiasm.  But maybe it’s just us ?

    How would you word this?

    in The Chat Board

    Posted

    I would use red/green tape - red for no, green for yes, for using books.  I would really try to separate them as much as possible, though- different shelves, different bookcases.  Or a basket of books for sharing with reference books more on the shelf.

    Report Cards?

    in The Learning Challenges Board

    Posted · Edited by displace

    Do you do report cards?  I am considering it to help us feel more accomplished and finalized as we progress.  Our work is so constant and ongoing that every 8 weeks having a formal check in and review of accomplishments may be good.  I’m thinking of using academics (but in remedial subjects using progression goals vs grades - maybe stating how many minutes we worked or how many lessons we did as a summary), plus social skills we’re working on.  

    I think it would help DS and me to divide never ending homeschool into smaller chunks.  Any thoughts pro or con?

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