Teetering on Hope

I sometimes feel like I'm on a teeter-totter.  I hurdle between the highs of hope and the lows of despair about Carter's recent diagnosis of eosinophilic esophagitis.

A couple of things that give me hope are:

--my allergist says that it's being researched a ton right now.  And, he says he knows more about it now, than he did six months ago.  And, that he hopes he'll continue to know more and more as time goes on.  Since Carter is so little, that gives him a lot of time for modern medicine to come up with a good solution for him.  Sadly, there is no good answer.  Modern medicine (from what I'm still learning) does not know what causes it, or how to stop it.  Just to make it liveable.

-----Believe it or not, but I had a decent discussion with his allergist as well.  Shocking, I know.  As you've read, he hasn't been my favorite when it comes to the personality department.  But, we had a good conversation at his last appointment.  He reminded me that this will be a marathon, not a sprint and that we'll have to be patient as we try to get to the bottom of his food triggers.  It's going to be lots of testings and scopes.  That made me feel better to feel like my allergist is willing and able to stick with us through this.  I also felt more in control because instead of being told things, I had an entire list of questions and things I wanted to go over.  Even the allergist commented (from his high horse--so it meant even more) that I had "really good questions".  Duh.  It's my son, like I'm not going to take this seriously.  Anyways--he also didn't seem so "this is what you MUST do" as I told him that the feeding tube would be my last choice and he actually said that it was my decision.  Finally, some power back in my court.  Of course, I'll do a feeding tube if it's necessary, but since he isn't too bad off yet, I don't want to jump to super radical solutions yet.  I was glad to see he was OK with it.

-----Carter also hasn't thrown up in a few weeks.  This is huge!  (KNOCK ON WOOD)  I really think it's because I stopped breastfeeding.  Sorry if this is TMI.  I kept going because I was so worried about his nutrition.  But, the day I got his diagnosis I stopped because I knew we had to have a CLEAR idea of exactly what he was getting and nursing was just too big of a question mark in my mind.  No one told me to stop, I just felt it in my gut that I should.  14 months was more than enough, so I didn't feel bad.  I had actually had the thought cross my mind several times before, but all you ever hear is "breastfeeding is best...blah, blah, blah..." so I stuck with it.  And honestly, he seems to be doing better since we stopped.  He's up to 18 pounds (FINALLY I was beginning to think he'd never get past 17 pounds) and his vomitting is less.

-----I think purreeing his foods is still really helping.  He's experiencing hardly any gagging.  It's a pain to always blend everything, but I'm definitely getting used to it.  And, with how swollen his esophagus was--I can see why he would need it until it calms down.  Sometimes I worry about the long-term sustainability of this and how he'll need to learn to chew better, but I can only focus on today.

-----This last thing I've debated sharing.  Mostly because I'm still not 100% sure how I feel about it.  But, I'll try to continue my honest approach to this blog, so...we're going to try some homeopathic medicine.  I KNOW.  I used to laugh when I heard of people trying these type of things.  Quacks, witch doctors, and snake oil was all I could think of when I heard of this branch of medicine.  But, a funny thing happens when you're stuck with an unpleasant diagnosis and modern medicine doesn't have any good answers.  All I've been doing since his diagnosis is trying to find answers.  I've joined support groups and I read, and read, and then read some more about it.  And, from what I see modern medicine just masks the symptoms--there is still no cure--and frankly steroids are not my idea of band-aiding a problem.  I think steroids are great for certain uses and I know plenty of good people who benefit from them.  I just don't feel good jumping to them without seeing if there is anything less invasive.

I would hate for Carter when he is old enough to see what we've done with his health to ask me why I wasn't willing to try everything that was out there.  Why, because of biases was I not willing to at least make an appointment and see what the homeopathic doctor has to say?  I don't feel comfortable just running with one doctor's diagnosis--especially when I've never felt the doctors we've seen have put much time into Carter, or have looked for other possible solutions.  It's been like a check-list.  If he has this and this symptom then take this prescription that happens to have horrible side affects.

I've talked to several people who have been to this clinic, and what makes me feel the best is that they received their medical degree first, then went back and got a homeopathic license.  This clinic practices both, so I don't feel it's too out there or mumbo jumbo.  If they pull out some cross and skull bones I'm heading for the door!

I've also talked to a few EOE mothers who say they've seen some really great results trying more homeopathic results.  I'm going to have them do a Meridian Stress Test and we'll go from there. 

Am I posting this too soon?  Probably.  Am I teetering on the edge of hope a little too much?  For sure.  I know that this might not fix Carter completely.  I know it may not do anything.  I'm TRYING to tell myself that and to not get my hopes up.  But, I cannot help but hope.

His appointment is in a few weeks.  I'll let you know how it goes.  I figure we have nothing to loose.  Well, except money.  Of course this is not covered by our insurance.  But, what a better investment than in our son's health.  Some things you can't put a price on.  Crossing our fingers we get a tax return!!!

To sum up--I feel like I can push off the ground of dispair and try to fly high into hope on this bumpy teeter-totter.  But, I'm hoping I'll be able to stay up, and not get slammed down as gravity makes it's presence known.

I don't know the future.  I don't know what turns Carter's diagnosis will take.

All I know is that I feel better the more I learn.  I've done my grieving and boo-hooing and now it's time to get to business.  I'm sure I'll still have moments where I feel bad, that will be natural.  But right now I want to dig in and see what we can discover.  I am grateful for ways to talk to people around the world with similar conditions and see what they have done.  I can't imagine having this 50 years ago  (not that they probably knew what it was...) I am grateful for endless links and info to look up his diagnosis so I don't have to just go off a 15 minute appointment with a doctor that skims the surface of this complicated diagnosis.  And, I am grateful there are options.  They might not be the right options, but I will at least feel better if I have to do something drastic with Carter like feeding tubes and steroids if I know that I did everything in my power to try other things.  If any of you have experience with natural/homeopathic medicine I'd love to hear about it!!

I am feeling good today.  I hope this feeling lasts.  If it doesn't--I know that the Lord will be with me to comfort me, and that my awesome friends and family are here to support me.  I'm swallowing the fact that there may be good days, or hopefully even good months--and then some not good months.  I'm buckled in and trying to prepare myself for this long journey ahead as best I can.

And, since you made it through this long post...here's a fun picture of Carter as your reward: