And So It Begins

Today officially started Amelia's food journey back to health.  Or so we truly hope....

Who is Amelia?  What is this food journey back to health?  Let me tell you what I can.

Amelia is an amazing, beautiful, sweet, smart, adorable (you might have caught on I am a little bias) girl who was just diagnosed with an eating disorder called ARFID (Avoidant/Restrictive Food Intake Disorder).  What does this mean?  It means that, in spite of her LIKING food, being willing to choose what sounds good to eat, when it comes time to actually eat it, she takes a bite, chews, but then is afraid of actually swallowing it.  Sometimes, it is because she feels her throat or stomach hurt.  Other times, she complains of mucus in the back of her throat.  In short, she won't eat, or won't eat enough to remain healthy.

Has she always been like this?  NO!  This girl has been amazing since she was born.  She started out at 10 lbs, born a week early, no gestational diabetes or anything.  She was just at the top of the growth charts... And remained there for the last 6 years.  She is the girl who would give you a frown if the sauteed kale or roasted brussell sprouts passed her without her getting a shot at them.  This was the girl who could put down an almost man-sized serving of steak.  She has always been a great eater... Until everything changed...

A month ago, she had a gastric bug and was throwing up for half a day...  I would think, if anything was going to do it to her, it would be that, but she got over that, slowly came back to a normal diet, and was eating as usual.  Then, in mid-January, she came down with some kind of respiratory infection.  She shared it we me and with mommy, and we both spent the better part of a week feeling like death warmed over.  Amelia, on the other hand, seemed to get over it in a matter of a couple of days, but her eating never picked back up.  She had always followed cyclical patterns of eating.  Seeming to eat a lot more, bulking up, and then growing (you don't get to be 4 ft 3 in by age 6 by NOT eating), and then tapering off a bit, so we didn't notice the change at first.  We had actually taken her to the doctor because she had continued complaining of her throat hurting and her stomach hurting.  The first trip to the doctor, she had dropped 3 lbs in under a month, but there didn't seem to be any signs of redness in the throat or anything that would indicate stomach or throat problems.  When the problems persisted over the weekend, we brought her back in the next Monday (which would be about 4 days ago now), and she was down another 3 lbs.  That was in a matter of 5 days.  The pediatrician recommended we go to the ER at Randall's Children's Hospital across the river in Portland, Oregon for rehydration, nutrition, and some blood tests, so we went.

We spent the next 7 hours in the ER with a very worried, very scared little girl (and two VERY scared parents, trying to figure out why they couldn't help their daughter get better).  A couple of the nurses, after hearing the stories of Amelia being such a good eater, and then all of a sudden changing, recommended a clinic called the Kartini Clinic that was just a few blocks away.  They said it was well known for dealing with children with eating disorders, and had people come from around the world for it.  We got the information, and I even called them later that afternoon (this was Monday, 4 days ago, January 28th).  I was told when I called and talked to them at that point that they could get us in by February 14th.  This was devastating because I had no idea how we were going to keep Amelia fed and out of the hospital again until we could get her in to see someone.

We got home from the ER that evening, got some sleep, and the next morning, Amelia was able to drink her breakfast, not getting as much as we would like in her, but getting more than we had been getting into her.  We even ran some errands, and went by her school so she could see her classmates and watch a movie with them.  While she was watching a movie, I heard back from the pediatrician regarding the blood tests and follow up.  The pediatrician said there were no signs from the tests, or from previous physical exams of any physical medical issue with our daughter, that she believed that our daughter had a psychological eating issue, and she had the name of a place she recommended... in Portland... that dealt with children with eating disorders....  Unbeknownst to her, about 5 minutes before I got the call from her, I had just finished filling out the paperwork on my phone online for the Kartini Clinic.  Yup, she said THAT was the place to go for Amelia.  Luckily, I had already started the process.

So, I called Kartini clinic for the second time to let them know I had sent in the paperwork and see what was the next steps.  Upon reaching them, I spoke to their intake coordinator, who I had spoken to the previous day when I had been told it would probably be the 14th before we would get it.  She told me on Tuesday they had just had a cancellation and could get us in on February 1st (yup, today).  This was WONDERFUL news...  2 weeks to keep my daughter fed and out of the hospital I had no idea if I could do.  2 days.  That, I could manage.  She could eat pop tarts and pringles if she would just eat them, at least for a couple of days.  They then asked if we would like a referral to the Ronald McDonald House at Legacy Emanuel Hospital, since we lived about 50 miles away, and commuting daily was not a prospect we liked.  Of course we said yes, and they went ahead and sent the recommendation over.

About half an hour later, the intake coordinator called me back and said the referral to Ronald McDonald House was accepted, but they wouldn't have an opening for us until the 14th of February (I don't know what it is with everyone not having anything until Valentine's day....).  This was good news because it would mean that at least eventually, we would be able to stay close, but two weeks of figuring out where we would stay?  That was a little disheartening.  So, I went to Facebook, posted an update with our prayer requests and needs, and I actually had two friends offer up rooms for us to stay in.  This was great news because it meant at least we would be able to figure something out, even if it wasn't optimal.

The next day (if you are following the timeline here, that would be yesterday, Wednesday, January 31st) I got a call from Ronald McDonald house.  They had a family that was leaving early, and they would have a room available for as as early as February 2nd (tomorrow, Friday...).  This was almost overwhelming.  Everything was slowly falling into place.  We had an initial interview on the 1st, a place to stay as early as the 2nd.  Now, what about the dogs, the cats, and the fish?

Yeah, that's right.  We are animal people.  We have 2 dogs, 2 cats, down to one fish, and three snails.  All of these we had to figure something out.  I thought at first Katherine could go with Amelia, I would stay at the house and take care of them and drive down when I needed to.  I didn't LIKE this idea, but what other choice did we have...  About that time, responding to a text I had sent him, asking if he might be able to check on our dogs while we were in the ER on MONDAY, our regular dog sitter texted me back saying "sorry, I didn't get this until now and I wasn't able to check on the dogs.  I have been following the story on Facebook, and I will watch the dogs.  You don't need to pay me."

PRAISE GOD!

I believe in God.  If you want to say it was good karma, or the universe smiling on us, or many friends and families praying, whatever it was, one more piece fell into place.

Lastly was the interview today.  We had no idea what the future was going to be, when we could get Amelia in, what the whole process would entail, how much it would cost.

To shorten this part as I have already been going on for a bit (sorry, future updates should HOPEFULLY be shorter), we found out the price wasn't quite as huge as we thought, but it is still more than we can readily afford.  But, this is our one and only daughter.  We agreed to the treatment plan, and got the ball rolling to get Amelia in first thing tomorrow morning.

Some of the scarier parts of this time were the parts about Amelia getting a Naso-Gastric (NG) tube, which was the last thing any of us wanted, but the best thing for her in the short term.  We are just hoping she will be a brave girl and let them put it in at the clinic tomorrow so we don't need a trip to the ER and sedation.  Also was the talk about putting her on medication called Olanzapine, to help removed the delusion in her head that there is some reason she doesn't want to swallow.  The fear was possible long-term effects, but the doctor had heard that from a number of parents and reassured us this is a VERY short term use, no known serious or long-term side effects, and as soon as she could, she would take Amelia off of it.

So, that is about the whole of it to this point.  Tomorrow, we show up at the clinic at 8 AM and hope and pray the day goes well.  We will then check into the Ronald McDonald House tomorrow night, and start our weekend of tube feedings and trying to get Amelia and us settled in there and ready for the next week.

Prayers, good thoughts, good karma, etc... is always welcome.  Friends and Family and their support so far has been great and we appreciate everything.  If interesting in coming by and visiting at some point, please contact me first as we currently have no idea how Amelia is going to handle the next few days or weeks.  Again, thank you all, and if you have gotten to here, I commend you for your fortitude in reading my ramblings.  I will try to keep future ramblings a little shorter...  Thanks again and goodnight.