Struggling (VENT)

twoasone1

It always feels like something is wrong with DS, besides his three diagnosed 'wrong' things I mean. 

He now has an infection inside his g-tube site.  It is so frustrating.  I can usually roll with the punches pretty good, today is just a hard day I guess.

We still haven't found a food he can eat, and he literally begs for the food off of our plates.  It breaks my heart everyday.  I think I need to stay off of the regular boards for awhile because if I see one more post about someone complaining because their child is a picky eater, I might lose it.  I would give just about anything to feed my child ANYTHING.  I wish they knew how lucky they are...

There is no reason to this post, just venting.  Thanks for letting me get this off of my chest.

skittles_123

I am so sorry. Lots of ((((Hugs))) and hope things get better for you and your LO.

mommy06

I am sorry. I feel your pain. It is frustrating! (( hugs))

MummyGruetzie

It seems like that around here. The never ending list of who you need to see and the constant search to figure out a solution for one thing only to realize there are ten more issues is exhausting! But its exhausting because you are searching for answers and getting to the bottom of things. You're such a great Momma to him.  

I'm sorry you're going through a tough time. *Hugs*.

On a kind of different note, do you have any other special needs Mom's you can talk to? I met another Mom at a conference last year who has very similar needs to DD. She lives a ton of miles away, but its so refreshing to talk to each other on the phone and laugh or cry about these things together. 

Thinking of you and hoping that things start to turn around for you guys or at least get a little bit brighter. . .  

KathW

I'm sorry, that is hard. The little things are exactly the things that get me too. I feel like the big ones, I can take, but when the little ones get piled one it is tough.

 Can he have dum dums? I don't have a package, but I THINK they are only sugar and corn syrup. Ben is usually pretty happy if we just give it to him, he rarely takes more then 3 licks.

 

JaysonandKristin

While my son ditched his tube awhile ago, he will NEVER eat regularly.  I read in your blog that your son has EE, my son was born with EA/TEF.  His esophagus is narrowed at the surgical site where they attached him. (actually there are a few EA/TEFers with EE that I have connected with through FB).

He gets food stuck, it puts enormous pressure on his trachea and he's gasping for breath.  It's an everyday occurrence.  Meanwhile, the 8 month old down the street gets to eat whatever her mom puts in front of her.

Add to that, DS has a dairy allergy.  So, DH and I went vegan so that we could eventually feed him from our plates in small bites.  

EATING.  Who EVER thought it would be a struggle?  I mean, it's a normal function that sustains life.  It shouldn't have to be so hard.

Trust me, I'd listen to you vent every.single.day because I can TOTALLY understand where you're coming from. 

twoasone1

Thank you ladies.  I knew you would understand.  It really is the 'little' stuff that is harder to take.  It is like you spend all of your mental energy dealing with the larger issues, that the small ones are like the straw that broke the camels back.

I don't have any special needs Moms that I know.  That does make it harder.  Everyday I hear complaints like little Suzy still won't eat broccoli, and Johnny is going to be 12 months next week and he still isn't walking.  In my head, I am just like wow.  I, obviously, don't say anything to them about it because it is a genuine concern for them whether I think it is founded or not.

DS has GERD, EE, and sub glottic stenosis.  The last few days his stenosis has been flaring up as well, this always worries me because it means it is hard for him to breathe. 

Anyway, thank you all for understanding.  I know you all completely understand and get where I am coming from.  I am so glad you are here.