Special Needs

super quick update! (eta:not so super quick..SORRY!)

M went to the neurosurgeon (NS) on Friday and he said that given her symptom's and P's issues and our general all around bad luck she needs an MRI.  Her butt crack is very crooked and odd looked (never really paid attention to it before) and he said any mid-line anomaly coupled with symptoms/family history earns an MRI to be sure.  So that will hopefully be approved by our new insurance.

Our new insurance has a $2000 out of pocket max vs $8000 SUPER HAPPY! P's medicaid should pick up a $1000 and we will pay the other which means our KKI inpatient (if we get in) will be hopefully free.  We have an order of caths to be put in which are $990 before insurance and her surgery is friday so i'm fairly certain with the $500 deductible that is more than $500 out of pocket.   

We went out of town this weekend to see H's parents and visited friends, there were 6 kids total (4 other girls 2 boys).  P played by herself it was so sad..she was kind of the odd age range.  I think 3 girls were 4, 1 was 2 (but not very verbal and alot smaller than P, and one boy was 9 months and 15 months).  I got super emotional when we left thinking the worse thing any of their parents have dealt with was an ear infection.  Totally went down the why me path and bawled like a baby.  

Which brings me too, I have my first appt with a therapist on 5-21 and P's is 5-22 we found someone who is willing to see her and while H is against it and says it's my job to be her therapist he is off that day and is willing to come to see what they have to offer us and if we feel it's a good fit.

My thyroid has gone wack as well and they thought it was graves disease because it's hyper but my antibodies came back negative so I have to wait for an uptake scan.  I was supposed to have NO appointments last week, I ended having to throw in a thyroid ultrasound for me, dr appt, endo appt, bloodwork for me, bloodwork for M and neurosurgeon appt!  

Like always, I appreciate all of the support you guys give and I truly feel this is the only place where people "get it."  You ladies are amazing even when the answers aren't what I want to hear, they are what I NEED to hear.   

 

ETA: Convo with P last week..

P: Is you potty trained mommy?
Me: yes baby
P: Why can't I be potty trained?
Me: lack of words, FML
P: Morgan can be potty trained?
Me: Yes baby. 

P: It will be OK. 

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


Re: super quick update! (eta:not so super quick..SORRY!)

  • I'm sorry things are so difficult for you and your family lately.  Hopefully things will calm down soon and therapy will be good for you and P.  Glad to hear your H is at least willing to give it a try!

     

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  • imageToastieSimons:

    I'm sorry things are so difficult for you and your family lately.  Hopefully things will calm down soon and therapy will be good for you and P.  Glad to hear your H is at least willing to give it a try!

     

    Thank you.  I think I feel like a lot of ladies on here and it's almost therapeutic to be able to get it all out  and know that someone else knows what's going on my life! I don't feel like I can tell most people because they really don't know what to say.  

    Hows that little one cooking? 

    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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  • imagerealisticdreams:
    imageToastieSimons:

    I'm sorry things are so difficult for you and your family lately.  Hopefully things will calm down soon and therapy will be good for you and P.  Glad to hear your H is at least willing to give it a try!

     

    Thank you.  I think I feel like a lot of ladies on here and it's almost therapeutic to be able to get it all out  and know that someone else knows what's going on my life! I don't feel like I can tell most people because they really don't know what to say.  

    Hows that little one cooking? 

    already over 5 lbs via our last u/s a week ago!  Just counting down the days and I'm so grateful I haven't swollen yet.  By this point with DS I was so swollen I could barely do anything.  

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  • imageToastieSimons:
    imagerealisticdreams:
    imageToastieSimons:

    I'm sorry things are so difficult for you and your family lately.  Hopefully things will calm down soon and therapy will be good for you and P.  Glad to hear your H is at least willing to give it a try!

     

    Thank you.  I think I feel like a lot of ladies on here and it's almost therapeutic to be able to get it all out  and know that someone else knows what's going on my life! I don't feel like I can tell most people because they really don't know what to say.  

    Hows that little one cooking? 

    already over 5 lbs via our last u/s a week ago!  Just counting down the days and I'm so grateful I haven't swollen yet.  By this point with DS I was so swollen I could barely do anything.  

    yayy!  Thats awesome!  I was really swollen with P too but I never did with M.  I remember I had to take my wedding rings off by 25 weeks with P but wore them the whole time with M.  I couldn't even wear shoes to work with P, and I broke a pair of flip flops from my flat feet!  Maybe it's a 2nd baby thing =) 

    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


  • That is a lot.  I have to say the "It will be okay"  really melted my heart.  I just want to give her a hug.

    image
    Asher Benjamin and Lola Aisling

     Infertility
    PCOS, Progesterone Deficiency Disorder, Multiple Miscarriage
    Clomid, Metformin, Ovadril, PIO, P17 Iron/Platlet Tranfusion

    My Spring Babies! 
    <3 Angel Baby   Elisabeth Adelle  April 2008 <3
    Asher Benjamin  April 2010
    Lola Aisling  May 2014
  • Sounds like things are falling into place. I think the therapy appointments are a great idea, I hope you like both of the therapists. Managing all those appointments sounds like a serious challenge, I think you deserve a Super Mom Cape! Keep up the good work.
  • Left Hug It will be okay. You are doing a great job, and it really is okay if P can't be potty trained. 
  • You're doing a great job! Keep being tough for your kiddos! 

    Keeping my fingers crossed that your thyroid scan is ok, you certainly don't need anything else added to your plate! 

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  • So sorry that you have more on your plate but you, as always, are so strong and such a wonderful mom. So good to your girls and to yourself.

    I'm glad to hear that you were able to find a therapist and glad to hear that your husband is going to go even though he is against it in general. I loved P saying "It will be ok". She is so sweet.

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