I wish I could give a better update than this, but I just don't know...
I'm frustrated
Pardon me
This is more of a venting of feelings than an official update
Hazel's face looks good
But she still has patches all over her cute little body
She still scratches herself all day...
every day
She only gained .5 oz. this week
That's like what?
A grape?
Failure to thrive
Those are hard words to type
She's still throwing up
At least once a day
Which is much better than 20+ times a day
but frustrating
Neocate ®™ is expensive
But it makes her so much happier
But so expensive
Insurance would cover a feeding tube
and the surgery to put a feeding tube in
and Neocate ®™ if it were fed to her through a tube
but not if she will eat it from a bottle
which she does
quite well, I might add
It's absurd
People keep calling me strong
and courageous
I'm not
I'm scared
and I cry
a lot
But, we met with Kids on the Move
and they're AWESOME and make me feel capable
And Hazel really is adorable
and funny
and so worth it
And Cannon is smart
and hilarious
and sweet
And Jarom is so wonderful
and supportive,
and snoring right now
And my family/ward members/blog readers/facebook friends/
strangers I met online while googling "eosinophilic esophagitis" for the 800th time
are amazing people
who have just the right words
And Heavenly Father loves me enough to help me gently learn
how to be a mom
and how to be a bit pushy
and how to get what I want
and how to want the right things
and how to listen
when I just want to scream
People are good. Yes, I know Heavenly Father loves me.
I'm frustrated
Pardon me
This is more of a venting of feelings than an official update
Hazel's face looks good
But she still has patches all over her cute little body
She still scratches herself all day...
every day
She only gained .5 oz. this week
That's like what?
A grape?
Failure to thrive
Those are hard words to type
She's still throwing up
At least once a day
Which is much better than 20+ times a day
but frustrating
Neocate ®™ is expensive
But it makes her so much happier
But so expensive
Insurance would cover a feeding tube
and the surgery to put a feeding tube in
and Neocate ®™ if it were fed to her through a tube
but not if she will eat it from a bottle
which she does
quite well, I might add
It's absurd
People keep calling me strong
and courageous
I'm not
I'm scared
and I cry
a lot
But, we met with Kids on the Move
and they're AWESOME and make me feel capable
And Hazel really is adorable
and funny
and so worth it
And Cannon is smart
and hilarious
and sweet
And Jarom is so wonderful
and supportive,
and snoring right now
And my family/ward members/blog readers/facebook friends/
strangers I met online while googling "eosinophilic esophagitis" for the 800th time
are amazing people
who have just the right words
And Heavenly Father loves me enough to help me gently learn
how to be a mom
and how to be a bit pushy
and how to get what I want
and how to want the right things
and how to listen
when I just want to scream
People are good. Yes, I know Heavenly Father loves me.
(I've read through this a few times and I can't decide if I want to hit the orange "publish post' button. I think I will. But please don't judge me.)
10 comments:
Do you know if Hazel is allergic to goats milk? He had so very mild allergies to milk and would spit up a ton every time I fed him, and a friend suggested goats milk, so we figured why not give it a try. And after we did that he would only spit up a little bit, and it help transition to cows milk. I don't know if Hazel is allergic to goats milk, but it might be something to look into. I hope she just keeps getting better!
You are a WONDERFUL mom, that is why you know so much,fight so hard and get so frustrated. This is not easy or fun or what you expected, so go easy on yourself sweet girl.It sounds like you are going in the right direction and doing all you can. Great, great job!! Hang in there sweetie.
To be strong and courageous means that you're doing what's required despite being afraid. You're a great mom. I can't imagine how hard it must be to watch your little girl struggle with those challenges, but she's in very capable hands.
Hey Ashley, I love that you are keeping us in the loop, even though it is probably hard! We are thinking of you and praying for you! I can't wait to see you at our girls night, and hopefully it will help get your mind off of things! We love love love Kids on the Move...they do amazing things! Good luck!
Sorry Ash. I realize these kind of posts can be hard to publish. I've had a few of those that are still in the drafts. I understand it might not be easy, but eventually it will all be over & you'll be stronger. With all the knowledge you're gaining you'll be able to help so many others that may have this trial in the future. Although you may not feel like you're strong... I know you are. Your family wouldn't be able to do it with out ya. Hang in there, and if you ever need a little vent session... I'm just a phone call away. Love ya!
Hey! My husband has eosonophilic esophogitis! I posted about him getting his esophagus stretched a few times a year so he can swallow.
P.S. It's okay to feel what you're feeling. Don't feel bad about it. I feel those feelings on a regular basis and I don't have the problems you're dealing with.
It's okay to be frustrated! It's hard when God believes that we are stronger than we think we are. But I think we would all rather have Him in charge. You are a wonderful example and I appreciate you so much. Hang in there! Melanie
I can feel your pain in more than one way. When I was born I was also diagnosed with severe allergies, and put on failure to thrive. Luckily they were experimenting with formula's that were not soy or milk based and I was actually a "test baby" for many of the new formula's they have now. They told me I would never be able to eat many foods, BUT by the time I was 3 or 4 I could eat most foods, and by the time I was 6 I had NO food allergies. I was very lucky that I grew out of them, EVEN the ones they say "You won't" and I know others who have as well.
I also have a child who has food allergies, and I nursed her the first year only eating meat, a few fruits and a few veggies, NO sugar, NO bread, No dairy. IT was so hard, frustrating, exhausting. She also threw up ALL the time, even on the diet. We still have to be careful of what she eats BUT the worst of it is all the throw up. She vomits on a good day only 3 times, but it's real person vomit. She eats real foods (well the ones she can have)which makes for a very messy clean up. I have placed towel and blankets all over the house to quickly grab the vomit, but most the time there is no warning so I end up scrubbing vomit several times a day. I get up in the night (several times a week) to a vomit filled crib. It's tiring, exhausting, frustrating. We have gotten her on several different meds that are supposed to help but don't. I feel your pain, and wish I could help you out some how because I know some what (not exactly) how you feel.
As far as the allergies go, my daughter is now 20 months and a few of the allergies are starting to clear OR subside so there is less of a scare. I realize this does not help you out, BUT there is a small light in the tunnel.
P.S. I didn't realize this was signed into my husband's account. So your probably wondering who this is, haha.
Good Luck with it all,
Jamie Schnegelberger
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