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Haven't had one of these in a while..(day 1 update)

realisticdreamsrealisticdreams member
edited January 2014 in Special Needs
a super fun week, that is.  (sarcasm).

Monday-M goes to see the neuromuscular dr that DD1 saw in November.
Tuesday-Preschool then drive 1.5 hours opposite direction to seating clinic for P's wheelchair eval
Wednesday-P did have ortho appt scheduled for her hips, but had to reschedule to get my car in the shop!
Thursday-P has urodynamic study to see if we need to start cathing again..honestly I won't be that upset if we do, she is leaking and going constantly!
Friday-I work 

Deep breath!

(it totally just continues too because I work Sunday, and Monday AM I go to my GI for a followup (I have crohns) and Monday afternoon P goes for a consult on her upper lip tie surgery)!!

(sometimes I wish we were all on a facebook private group so I didnt' have to feel bad about making a new post for something silly! lol)
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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Re: Haven't had one of these in a while..(day 1 update)

  • funchickenfunchicken member
    Don't feel bad! This is what the board is for. That sounds like a really rough week. I was just about to post a vent about DD1 waking up at 3am feeling like she has to throw up. Stomach bugs are pure hell in our house because they send S into an anxiety spiral. The last time she had one she ended up with gastritis that lasted for 5 months, we had to start reflux meds, and now she wigs out every time her stomach feels off. DH is downstairs with her watching my little pony (bless him) to try to get her to calm down.
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  • Princess_LilyPrincess_Lily member
    Aww, sounds like a rough week.

    Don't worry about this posting, seriously, its a place we could all vent, laugh, and cry together.
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  • realisticdreamsrealisticdreams member
    mrszee2b said:

    Don't feel bad! This is what the board is for. That sounds like a really rough week. I was just about to post a vent about DD1 waking up at 3am feeling like she has to throw up. Stomach bugs are pure hell in our house because they send S into an anxiety spiral. The last time she had one she ended up with gastritis that lasted for 5 months, we had to start reflux meds, and now she wigs out every time her stomach feels off. DH is downstairs with her watching my little pony (bless him) to try to get her to calm down.

    Omg dd1 is so hysterical when she pukes that it's almost comical. She gets on all 4 and basically pukes on the floor. And she was sleeping in our bed til a few weeks ago so we always got puked on too. Once a week I take a moment to be thankful that no one has caught a stomach bug!
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • JustinloveJustinlove member
    Crap girl! I thought my week sucked, but yours was crazier! We had stitch removal, then both girls ended up with bacterial pneumonia. Isn't life fun sometimes?
    My Craft Blog: Sew Girly Studio
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  • realisticdreamsrealisticdreams member
    Justinlove said:
    Crap girl! I thought my week sucked, but yours was crazier! We had stitch removal, then both girls ended up with bacterial pneumonia. Isn't life fun sometimes?
    It hasn't happened yet lol it's for the coming week, but oh my gosh yours is crazy too!  Are they hospitalized or at home?  P has had pneumonia before but I'm assuming viral, though she did take antibiotics.  I don't know a whole lot about bacterial pneumonia, I hope they are on the mend!
    -auntie- said:
    @realisticdreams

    I want to lie down and take a nap after reading about your week. Yikes!
    Me too, i'm stressing like crazy and it hasn't even started yet, ugh!
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • JustinloveJustinlove member
    They are both on antibiotics and I am sure A gave it to LA through their nonstop smooching. I think she picked it up at daycare (a classmate had bronchitis and the dr said it has been going around). A is doing better than LA, but has been on meds longer. I feel like I am giving nebulizer treatments nonstop. LA is a pro, but A HATES them so that is fun. On the positive side, A's chin looks fantastic!
    My Craft Blog: Sew Girly Studio
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  • funchickenfunchicken member
    realisticdreams said:
    Don't feel bad! This is what the board is for. That sounds like a really rough week. I was just about to post a vent about DD1 waking up at 3am feeling like she has to throw up. Stomach bugs are pure hell in our house because they send S into an anxiety spiral. The last time she had one she ended up with gastritis that lasted for 5 months, we had to start reflux meds, and now she wigs out every time her stomach feels off. DH is downstairs with her watching my little pony (bless him) to try to get her to calm down.
    Omg dd1 is so hysterical when she pukes that it's almost comical. She gets on all 4 and basically pukes on the floor. And she was sleeping in our bed til a few weeks ago so we always got puked on too. Once a week I take a moment to be thankful that no one has caught a stomach bug!

    Oh man, that sounds rough. DD1 launches into a monologue that sounds like the five-year-old's version of an existential crisis every time she has an upset stomach. Good luck with your crazy week, realisticdreams--I hope it goes as smoothly as possible.
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  • realisticdreamsrealisticdreams member
    Day 1 Recap:

    M had a meltdown walking into the office bc I wouldn't let her bring in a bag that has 2 pairs of dora shoes in it.  Neuro notices quirks, neruo asks if she has seen developmental pedi yet. Great.

    M ran up and down the hall, has noticeably awkward gait, and her knees are hyper-something-ing. Too many hyper words lately for me to remember!  Also this dr who is one of the best in the country with EDS, disagrees with the geneticist and says a 2 year old can't be tested the way they tested her and that she does indeed have EDS like P.  Which is why she says she's always tired. P seems to have more joint pain and M has more muscle weakness.  Basically not much to do right now just wait for P to have her nerve EMG study in March, and if it shows something M will have one too.

    ALSO she said something to the effect of, "genetics isnt' worried about these deletions?"
    Hmm..what deletions?!

    Yeah.  That happened.  I'm well aware that the average person can have weird DNA, but I think I should have been told, and who knows if in a few years those deletions will be linked to something they have!  They didn't even do micro-array as standard when P went to genetics the first time.  

    And lastly she said P probably has mast-cell disease...which i'm not really clear what that is 
    except it explains her cough/wheezing/allergy issues in someway.

    Excuse me while I cry, and/or scream!
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • funchickenfunchicken member
    I'm really sorry. That's a lot to try to take in at one time. Vent as much as you need to.
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