Just can't catch a break

**Edited to add:

Dear Dodds Family, please keep an eye open in your emails.  We are taking Rylee to UW Hospital-Waisman Center Genetics.  However, before we can schedule an appointment we have to fill out an enormous packet of family medical history.  Rylee has a rare chromosomal abnormality, as you are aware, and we are trying to find out how this is affecting her now and in her future.   We're hoping for some more insight as to why she has quit growing and put a stop to this. Our baby is slowly withering away and we need your help.  All information obtained will be used strictly for the use of Rylee's family medical history and all will be confidential.  Thank you!   

Love,
Mary**

**Updated to add:

This was my pitty party post.  I am done now!  I try to keep these at a minimum.  Thank you for being my friends and family.  I really do love and appreciate you all.  I did sock all the negativity to the laundry.  It felt good and my laundry got done. 

Love,
Mary**

We took Rylee to UW Hospital today for a Swallow Study.  I was thinking last night, "I wonder if I can even go into Radiology with her?" Originally, I was going to take Rylee to Madison by myself while Kris stayed home with Troy.  We didn't want to have to wake them both up at the crack of dawn to be at the hospital by 7:45.  And that way Kristopher would get to stay home and sleep in with Troy as well since he doesn't get to bed before 1:00 am.  I talked to him on his lunch break and we decided that it would be best if he came along just in case I couldn't go back.  That meant that we also had to take Troy.  Regardless, we would've had to get him up early so he came with us.  As it turned out, I wasn't able to go back in Radiology with her so Kristopher did.  Troy and I stayed in the kid friendly waiting room.  It took over an hour for the entire thing start to finish.  While, we were waiting for them to finish, a couple walked in with their baby girl.  Many of her features resembled Rylee.  It makes me wonder if the answer to what Rylee "has" is right under everyone's nose but no one sees it.  Anyway, that little girl was next to see the same doctor Rylee did and have the exact same procedure done.

The results of the Swallow study were immediately available.  They put barium in her food that Kris fed her and watched it go down through her throat to stomach.  As it turns out, some of it doesn't make it to her belly but rather into her lungs.  Now think of how it feels when you swallow something and it goes "down the wrong tube".  It's not comfortable and you end up coughing like a maniac until you're not choking anymore.  It doesn't feel good.  That is how this little girl feels during every feeding.  This is called aspirating.  Dr. H concentrated her Pediasure to a nectar consistency.  She still aspirated with that.  Then Dr. H concentrated it to a honey consistency...no aspiration.  Now, for every bottle and feeding has to be the consistency of honey.  That makes it so thick that we have to slit the nipples of her bottle much like a nipple used when feeding cereal through a bottle.  We are to use a product called SimplyThick.  Therefore, that tacks on another $120 a month to just feeding Rylee.  With Pediasure, Duocal and now Simply Thick, we are up to about $500 a month just to feed Rylee.  We still have to feed ourselves and Troy and in 2.5 months, we'll have another mouth to feed.  We just can't catch a break.  Something has to give.  I fear that eventually we're going to have to live in a cardboard box under a bridge and walk to work.

I am just sick and tired of all this.  I want to wake up from this bad dream.  I want to take Kris, Troy and Rylee and run away from all of this.  But running away won't fix it, it'll just follow us.  I hate the amount of paper work that I am constantly filling out that says the same things over and over and over again.  I hate having other people's kids milestones rubbed in my fucking face.  I have done my best to separate myself from having to deal with that stuff.   I wish that Rylee could crawl and eat baby food.  I would give anything just to have her crawl to me.  I can't deal with others lack of sensitivity or common sense.  But I dwell on it.  It eats me alive and I just don't understand why it keeps happening.  I would never ever tell anyone who has a "disabled" child how much more my child has progressed than theirs.  Never!  My feelings are hurt and I'm pissed off about it.  I try to keep the peace and I try to "just ignore it" (like I have been told a million times) but I can't.  I am human.  And I am afraid one of these days I am going to blow and it's not going to be pretty and I'll say things I don't mean and will regret.  That is what I am trying to avoid.  Unfortunately, my husband is in the same boat as me.  His feelings are hurt and he's internalizing everything and he's dealing with everything just like me.  Together, he and I are alone and I very much feel that way. I just want a break!  Just one stinkin' little break.  Is that so much to ask?  APPARENTLY IT IS!  Thanks for reading my complaints.  I am now going to take out this negative energy on folding a load of laundry that just got done.