That crazy thing..again! — The Bump
Special Needs

That crazy thing..again!

You know the one called good news!

Or what I refer to as, not bad news or a new diagnosis.

P had her uro appt and kidney/bladder ultrasound yesterday.  Her kidneys are growing well on the growth chart and no hydronephrosis.  

I told our uro that I was just..done with cathing that I literally feel like I can't do it anymore.  To have P cry in agony that she doesn't want to go home because she doesn't want a catheter is just not fair.  

She said she was fine with that and we would accommodate what I continued to want to do (within reason) and help us (more kidney ultrasounds, etc).  Her surgery has a correction span of about a year.  While we thought the surgery basically rendered her incontinent, she is still not 'leaking' in between urination and they told me that she COULD still have sensation of needing to go, she is just going a lot more when she does go.

As for potty training she has 0 interest, negative even compared to months ago. Uro suggested we could try cathing again at age 3, etc if we wanted to set a time frame.  I told P that and she said, 'i dont want to use a catheter when i'm 3" lol.  The new uro is coming in Nov and I'm soooo hoping he has some new cutting edge treatment options for us.

It's hard right now to put 'achieving continence" on the back burner, but i'm making peace with the fact that a. she's not going through hell with cathing and b. her kidneys are not being directly affected at the present moment.

Now to make it through M's because I am scared to death of what it's going to show.

 

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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