Preemies

Sensory Issues: I need a pick-me-up

DD is in speech therapy and occupational therapy because of sensory issues.  She doesn't self-feed and is still on purees.  If she gets anything (like the puree) on her hands she freaks out.   We've made progress in that she now can tolerate yogurt by itself.

She is 16 months actual and I wish she could just pick up a cheerio and put it in her mouth. She doesn't put ANYTHING other than her fingers in her mouth.

Thankfully she qualified for EI, so we don't have to worry about paying for therapies because I think we'll be in it for a while.

Basically I'm having a temporary down moment and wanted to see if anyone else here was in the same boat because IRL I don't know anyone.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Married Sept 2008
~~TTC Nov 2010~~

IUI #2: 1/21/13-100mg Clomid(CD3-7)(8M post wash) + progesterone= BFP!! EDD 10/13/13
Beta #1=81.1 Beta #2=134.5 Beta #3=58.1 #4=2369 WTH?!-Not sure if its viable
2/21/13 - Went to RE expecting the worse and saw the flutter of the heart.To God be the Glory!!
 
5/29 - It's a Girl!!
8/21/13 - Naomi born at 32w3d by csection due to Pre-E
~~PAIF/SAIF Welcome~~ 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
imagephoto A789AD50-EAFE-4955-A617-02358EF02DBE_zpsbxkk1n87.jpg
My Wonder Woman!

Re: Sensory Issues: I need a pick-me-up

  • Hugs I am so sorry you are having a rough time. My sister was a 29 weeker and it took forever for her to learn how to chew we used to have to massage her cheeks. Then it took a long time for her to feed herself she was 2.6 when that happened. But she took off the minute she turned 3, you have to just wait unfort until they get there. The good news is they get there and my sister just graduated early from college so just because they get a late start doesn't mean it lasts forever.
    6 m/c
    Anovulatory cycles, increased Synthroid Diagnosed Sep 2010
    Natural cycle Dec 2010 BFP M/C 6 1/2 Weeks, D&E Jan 2011
    1 Clomid/Ovidrel BFN May 2011
    Natural cycle Aug 2011 BFP M/C 4 Weeks
    1 IUI Sept 2011 BFP M/c 7 weeks
    Provera Dec 2011 BFP M/C 3 Weeks
    DQ ALPHA HLA MATCH, High NK Cells Diagnosed Dec 2011
    IVF March 2012 BFP m/c 4weeks 5 days (IL, Prednisone)
    IVF#2w/DS July 2012 MEGA FAILURE BFN (IL, Dexamethasone)
    Diagnosed No real HLA Match, DQ Beta Triad, High TNF, Low NK Cells
    Oct 2012 Natural Cycle m/c 4wks (Lovenox, Prednisone) 
    Went to Beer Center- high tnf, low lad, implantation failure
    Nov/Dec 2012 LIT Treatment
    Dec 12 Humira
    Jan 2013 BFP
    Humira,LIT,Prednisone, Lovenox, IVIG, Baby Aspirin
    Miracle Born August 2013 Premature

    Yours doesn't have to be a sad story



    image
    image


    Lilypie - (ugiy)


  • Me, me, pick me! You are singing my song, sister. DS was exaaactly like that. He still is working through some problems but after a few months of therapy he tolerates more textures and feeds himself! It took a while and I won't pretend it was super easy, but the therapy has just done so much for him.

    Sensory issues are so difficult because they change on a whim and since our LOs can't quite put together a sentence yet, you just have to guess what the problem is. If I had a nickel for every time I said "BUT HE LIKED BANANAS YESTERDAY" to DH, I could pay for your LO's therapy myself. So just know that frustration is part of the deal but you are doing so much for her with the OT!

    Please feel free to page me here or PM me any time! I'm happy to talk sensory and let you know which things worked for which problems for us. I would tell you now but I am old and my memory is failing me...where am I...anyway, feel free to PM me :)





    I'm not new. I just hate The Bump. 

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  • luvboston said:
    Hugs I am so sorry you are having a rough time. My sister was a 29 weeker and it took forever for her to learn how to chew we used to have to massage her cheeks. Then it took a long time for her to feed herself she was 2.6 when that happened. But she took off the minute she turned 3, you have to just wait unfort until they get there. The good news is they get there and my sister just graduated early from college so just because they get a late start doesn't mean it lasts forever.
    2.6? Like 2 years 6 months?
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Married Sept 2008
    ~~TTC Nov 2010~~

    IUI #2: 1/21/13-100mg Clomid(CD3-7)(8M post wash) + progesterone= BFP!! EDD 10/13/13
    Beta #1=81.1 Beta #2=134.5 Beta #3=58.1 #4=2369 WTH?!-Not sure if its viable
    2/21/13 - Went to RE expecting the worse and saw the flutter of the heart.To God be the Glory!!
     
    5/29 - It's a Girl!!
    8/21/13 - Naomi born at 32w3d by csection due to Pre-E
    ~~PAIF/SAIF Welcome~~ 
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    imagephoto A789AD50-EAFE-4955-A617-02358EF02DBE_zpsbxkk1n87.jpg
    My Wonder Woman!


  • flerlgirl said:
    Me, me, pick me! You are singing my song, sister. DS was exaaactly like that. He still is working through some problems but after a few months of therapy he tolerates more textures and feeds himself! It took a while and I won't pretend it was super easy, but the therapy has just done so much for him.

    Sensory issues are so difficult because they change on a whim and since our LOs can't quite put together a sentence yet, you just have to guess what the problem is. If I had a nickel for every time I said "BUT HE LIKED BANANAS YESTERDAY" to DH, I could pay for your LO's therapy myself. So just know that frustration is part of the deal but you are doing so much for her with the OT!

    Please feel free to page me here or PM me any time! I'm happy to talk sensory and let you know which things worked for which problems for us. I would tell you now but I am old and my memory is failing me...where am I...anyway, feel free to PM me :)
    Thank you!!!

    Yesterday her EI coordinator came to the speech part of her therapy and we tried some oatmeal and she gagged big time. Then for about 5 minutes she WOULD NOT eat. Finally I coaxed her back to eating again - constantly showing her the mean oatmeal wasn't there anymore.

    Do you work, or are you a SAHM?  I work, so explaining what we're doing and not doing to my mom/MIL/SIL wears me out.

    We've also been told to give our daughter as much variety (in the texture she can tolerate) as possible. She doesn't want us feeding her the same thing two days in a row. She wants DD to accept change.  I think it's time to start making my own purees.
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Married Sept 2008
    ~~TTC Nov 2010~~

    IUI #2: 1/21/13-100mg Clomid(CD3-7)(8M post wash) + progesterone= BFP!! EDD 10/13/13
    Beta #1=81.1 Beta #2=134.5 Beta #3=58.1 #4=2369 WTH?!-Not sure if its viable
    2/21/13 - Went to RE expecting the worse and saw the flutter of the heart.To God be the Glory!!
     
    5/29 - It's a Girl!!
    8/21/13 - Naomi born at 32w3d by csection due to Pre-E
    ~~PAIF/SAIF Welcome~~ 
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    imagephoto A789AD50-EAFE-4955-A617-02358EF02DBE_zpsbxkk1n87.jpg
    My Wonder Woman!

  • conradtn said:

    flerlgirl said:
    Me, me, pick me! You are singing my song, sister. DS was exaaactly like that. He still is working through some problems but after a few months of therapy he tolerates more textures and feeds himself! It took a while and I won't pretend it was super easy, but the therapy has just done so much for him.

    Sensory issues are so difficult because they change on a whim and since our LOs can't quite put together a sentence yet, you just have to guess what the problem is. If I had a nickel for every time I said "BUT HE LIKED BANANAS YESTERDAY" to DH, I could pay for your LO's therapy myself. So just know that frustration is part of the deal but you are doing so much for her with the OT!

    Please feel free to page me here or PM me any time! I'm happy to talk sensory and let you know which things worked for which problems for us. I would tell you now but I am old and my memory is failing me...where am I...anyway, feel free to PM me :)
    Thank you!!!

    Yesterday her EI coordinator came to the speech part of her therapy and we tried some oatmeal and she gagged big time. Then for about 5 minutes she WOULD NOT eat. Finally I coaxed her back to eating again - constantly showing her the mean oatmeal wasn't there anymore.

    Do you work, or are you a SAHM?  I work, so explaining what we're doing and not doing to my mom/MIL/SIL wears me out.

    We've also been told to give our daughter as much variety (in the texture she can tolerate) as possible. She doesn't want us feeding her the same thing two days in a row. She wants DD to accept change.  I think it's time to start making my own purees.
    I remember once DS choked on a piece of banana during OT and would not touch a banana for weeks! Stubborn kids. 

    I work part-time; I am usually at home for his therapies (they come to our house). But I know what you mean; keeping track of everything is such an undertaking and then trying to help someone else understand is so hard. What I do is write out "instructions" - basically everything I think they might need to know, ie "Josh can take bites off a cracker but sometimes forgets to swallow, so remind him." Then I make copies and everyone who takes care of him gets one. It's sort of a complicated way to go about it but it has helped for us. 

    I make my own purees, and the way I've gotten DS to accept new foods is by mixing them with his favorites and slowly changing the ratio. He loooooves carrots so I started mixing in a little fruit with his carrot puree (gross, I know, but he loved it. Weirdo). Then more and more fruit, and finally he would eat a puree that was totally fruit. It took a few days to introduce each new food but now he is a little more willing to try some new things. So I don't know if that will help you but I hope it does! We use the same technique for adding chunkier foods - start with small chunks in a puree, and slowly make it less puree and more chunks until he will take bites of whatever it is, like apple slices, or let me feed him big chunks. 

    And, as much as I hate this phrase sometimes - hang in there. It is so frustrating! Some days I feel like I am doing everything wrong. But you are a great mom who loves her child and you are doing an awesome job. 





    I'm not new. I just hate The Bump. 

  • I probably should type up her instructions.  There is so many little pieces and when I'm repeating it for the 3rd time I forget a part here or there.

    Today I dropped her off at my mom's (she has breakfast there) and when mom was pulling out what she was going to have I told her she can't have the same food two days in a row.  She started protesting how hard it was and I immediately said, "I know...but I need your help to follow her therapy homework"
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Married Sept 2008
    ~~TTC Nov 2010~~

    IUI #2: 1/21/13-100mg Clomid(CD3-7)(8M post wash) + progesterone= BFP!! EDD 10/13/13
    Beta #1=81.1 Beta #2=134.5 Beta #3=58.1 #4=2369 WTH?!-Not sure if its viable
    2/21/13 - Went to RE expecting the worse and saw the flutter of the heart.To God be the Glory!!
     
    5/29 - It's a Girl!!
    8/21/13 - Naomi born at 32w3d by csection due to Pre-E
    ~~PAIF/SAIF Welcome~~ 
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    imagephoto A789AD50-EAFE-4955-A617-02358EF02DBE_zpsbxkk1n87.jpg
    My Wonder Woman!

  • conradtn said:


    luvboston said:

    Hugs I am so sorry you are having a rough time. My sister was a 29 weeker and it took forever for her to learn how to chew we used to have to massage her cheeks. Then it took a long time for her to feed herself she was 2.6 when that happened. But she took off the minute she turned 3, you have to just wait unfort until they get there. The good news is they get there and my sister just graduated early from college so just because they get a late start doesn't mean it lasts forever.

    2.6? Like 2 years 6 months?


    Yes 2 years 6 months
    6 m/c
    Anovulatory cycles, increased Synthroid Diagnosed Sep 2010
    Natural cycle Dec 2010 BFP M/C 6 1/2 Weeks, D&E Jan 2011
    1 Clomid/Ovidrel BFN May 2011
    Natural cycle Aug 2011 BFP M/C 4 Weeks
    1 IUI Sept 2011 BFP M/c 7 weeks
    Provera Dec 2011 BFP M/C 3 Weeks
    DQ ALPHA HLA MATCH, High NK Cells Diagnosed Dec 2011
    IVF March 2012 BFP m/c 4weeks 5 days (IL, Prednisone)
    IVF#2w/DS July 2012 MEGA FAILURE BFN (IL, Dexamethasone)
    Diagnosed No real HLA Match, DQ Beta Triad, High TNF, Low NK Cells
    Oct 2012 Natural Cycle m/c 4wks (Lovenox, Prednisone) 
    Went to Beer Center- high tnf, low lad, implantation failure
    Nov/Dec 2012 LIT Treatment
    Dec 12 Humira
    Jan 2013 BFP
    Humira,LIT,Prednisone, Lovenox, IVIG, Baby Aspirin
    Miracle Born August 2013 Premature

    Yours doesn't have to be a sad story



    image
    image


    Lilypie - (ugiy)


  • conradtn said:
    I probably should type up her instructions.  There is so many little pieces and when I'm repeating it for the 3rd time I forget a part here or there.

    Today I dropped her off at my mom's (she has breakfast there) and when mom was pulling out what she was going to have I told her she can't have the same food two days in a row.  She started protesting how hard it was and I immediately said, "I know...but I need your help to follow her therapy homework"
    That is one of the hardest parts for sure. Other people don't get it and even though they love your kids, it's hard to impress upon them the importance of doing therapy. My son wears braces for his feet and half the time I pick him from school, etc., they won't be on and I'm told they forgot, he didn't like them, etc. Which...okay, mistakes happen. But help me out! 





    I'm not new. I just hate The Bump. 

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