Day 27 - The Light At The End Of The Tunnel

We aren't home yet, but we have seen the light at the end of the tunnel, and it has given  us hope.  Amelia still complains some about us asking her to eat food, but tonight she had a piece of bread with 1 1/2 eggs worth of egg salad sandwich, 2 baby carrots (through some complaining about how hard they were to chew), and a brownie.  She ate it all, as well as most of her breakfast, all of her lunch and all of her snack.  Very good progress.

We had meetings today with the nutritionist, the family therapist, and the nurse.  I'll give a brief summary of each.

The Nutritionist - We wanted to know if there were any restrictions as to what Amelia could eat, or what we should give and should not give her, and we were told no, she could have whatever she wanted.  It really came down to us and our parenting, what would we allow her to have, etc...  This is great news because it makes it a lot easier to feed her.  Less making special meals for her, and more encouraging her to eat whatever we are eating.

The Family Therapist - The long and short of this was that Katherine still has a lot of image issues and frustration SHE is working with, and her not feeling good about herself affects all the rest of us.  Mainly because Amelia pics up on the fact that Mommy isn't happy, and when Mommy isn't happy, Daddy isn't happy because he LOVES Mommy and wants her to be happy.  Other than that, Amelia seems to be doing fine with this and excited about the prospect of getting the tube out and getting to go home....  Oh yeah, there is that bit too...  So, on to...

The Nurse - Sherrill let us know that Amelia's weight was almost 68 lbs, a couple pounds over her target weight, which is perfect.  We have taken her off the tube feeds at night (huge step, with a little trepidation, but a little excitement) and are encouraging her to eat all her meals instead.  It is expected that there will be a little weight loss at this point (transitioning from the Boost to regular food), but she has a couple of pounds leeway.  Also, Sherrill said that, from Amelia's food journals, there has been a good progression of her eating more and more, which is exactly what we want to see.  If she continues to improve at this rate, they would feel okay with pulling the NG tube on Monday, and very possibly getting ready to discharge us sometime next week. This is if everything continues as well as it currently is.

We DO have some trepidition about this, just because there will only be two sets of vitals since Amelia has gone off the feeding tube (one tomorrow, and one on Monday), and Katherine is concerned that might not be enough.  I think that the experts at Kartini have seen this enough that they know pretty much what to look for and what to be concerned with.

So, what could we use prayers for?  Well, definitely for continued improvements on Amelia's part.  So far, we have had to rely heavily on the reward proposition for eating dinner (eat this much of dinner and you can have dessert...) and that works okay for now, but what about when there is NO dessert... So, yeah, that she continues to improve and gets used to the idea of just eating again without us having to negotiate terms.

Also, we could use prayer for this weekend.  My mother with be spending the weekend with Amelia while Katherine and I take the weekend to go home and attend a school auction.  This will be Friday night, Saturday, and Sunday morning at home, in our own bed, with our dogs.  But it will also be my mother and Amelia alone (well, as alone as you can be at Ronald McDonald House) for a few days.  I am just hoping that Amelia eats well from Nama.

That is it for today.  Things are looking up, we have a few sparkles of hope around the edges of things.  We are rapidly looking forward to when we can have the tube pulled and Amelia can go back to being her abnormal self.  Thanks all for the continued prayers and good thoughts.

Day 26 - Incremental Improvements

Yesterday was staff meeting day at the clinic, when all the staff get together, discuss the patients, and decide what next.  This is good because both Katherine and I are asking the same thing...  Amelia has started eating food again, in small amounts, what next?  Do we follow the clinic's normal meal plan (really designed around helping Anorexic/Bulimic/Binge Eaters not as much for ARFID kids)?  Do we keep giving her 4 bottles of Boost a night?  When will she start eating breakfast, lunch, and snack at the clinic?  All questions that we are wondering about.

Well, at least one or two of these we got answers this morning.  Tomorrow morning, Katherine and Amelia are going to have breakfast at the clinic.  Katherine being there to have breakfast WITH Amelia solves at least for the short term, the issue of not enough supervision for all the kids.  Here is hoping that goes well and she doesn't get too frustrated with Amelia.  Regarding the Boost, we were told NOT to put her on the tube tonight (no Boost at all) in hopes of her waking up a bit more hungry tomorrow, to help with breakfast. 

Our last questions, regarding the meal plan and what does and doesn't apply to Amelia, and how we should follow it, etc. ad nauseum...  Well, we got the clinic to rearrange the nutritionist's schedule for us tomorrow so that we get in to see her at 9:30 AM, an hour and a half or so before our meeting with the family counselor, which is an hour or so before the meeting with the nurse...  So, LOTS of meetings tomorrow.  We are hoping that we can get everything sorted out and get a little bit better understanding of what the next steps and the expected progression is going to be.

On the fun side, though Amelia ate little of her dinner tonight (partially my fault... chicken broccoli stir fry that I seasoned, and then used Teriyaki sauce that was a bit salty, the broccoli was pretty overly salted), afterwards we got to paint ceramics...  Amelia and I both did a plate.  Hers is a bit abstract with blotches of color and dots and lines and stuff.  Mine has lady bugs and leaves around the wide rim underneath, with blue wrapping the edge from the bottom around the edge to the top.  And in the middle of the top of the plate are two ladybugs on a leaf... Hope it turns out half as nice as I saw it in my head...

Other than that, I went out for a 4.25 mile run tonight, along the East Esplanade in Portland, over one of the bridges, along the Waterfront, over the Steel bridge, and back to Ronald McDonald House...  It was a little creepy, and I wish I had mace with me just in case, but I survived (mostly).  I will say, the chafing is real my friend... the chafing is real.

That all being said, today was a slightly better day.  In spite of Katherine's frustrations, I think we are making incremental improvements.  Little steps forward, inches at a time, but we are moving forward.

Thanks all for the prayers, support, just for taking the time to read this daily.  I try to keep it interesting and worthwhile.  Hope I accomplish that.  Good night all.

Day 25 - Beginning Week 4

Yes, this is actually the start of Amelia's 4th week at Kartini Clinic.  It seems like so much less time and so much more.  In that time, she has been on a food pump the whole time, taking 111 bottles of Boost Plus or Pediasure during 10 hours of sleep at night.  That is a total of 27,750 ml of formula through the feeding tube since we have been here.  I am not sure how much more, but for the foreseeable future, we are still on this.

 The up side is after Saturday, we haven't had any outright refusal to eat.  We have had some complaining about what she is eating, and not a LOT of eating, but she HAS been eating.  This is good.  This is very good.  It feels like actual progress.

Some of the hurdles we are currently facing are:

1. The clinic maintains a staff to patient ratio during meal time, and they don't have enough staff for Amelia to have breakfast in the mornings with the other kids right now due to upsetting that staff to patient ratio.  This is troublesome because we (Katherine) really doesn't have the time or ability in the morning to get Amelia up, get down to the kitchen and make her breakfast and get her to clinic without Amelia being exhausted the whole day.  We could use prayer for a good, quick resolution to this.

2. Insurance denied the majority of the authorized claims.  It wasn't because they won't or don't cover it, in fact, I received letters from the insurance stating that they had authorized the treatments.  It was because the actual billings they received was missing a code that they wanted it to have....  Emily at the business office assures me this is an unfortunately all too normal occurrence, and that she will just have to contact them and see what it is they want on there and then re-bill them.  Pray for swift, and successful re-billing to the insurance.

3. Our patience with Amelia when she is whining and complaining about the food we have, or the food that she WANTS vs. what she is actually getting...  It is a lot sometimes, and hopefully as she starts eating more, this will go away.  Right now, we just need the patience to bear with it for the time being.  Prayers for patience are always appreciated.

To end on a good note, we had Pile of Puppies today, and Amelia got to go in a pen with 2 other girls, 3 of the Portland Blazers, and 5 young French Bulldog puppies.  They were pretty cute little dogs.  I would have much preferred a HUGE litter of Labradors or golden retrievers, or something big and fluffy like Bernese Mountain Dogs or Newfoundlands. We got French Bulldogs which weren't too bad.  Amelia had a good time, though one of the other girls kind of hogged a lot of the puppies attention.  Amelia still got to hold and pet a number of the puppies and seemed to really enjoy it.  Here are a few of the pictures to end with of Amelia's fun day.

Day 24 - Started Bad, Ended Better

So, what we learned from yesterday was our 6-year old has been attempting to play us...  She ate an oatmeal cookie with no problem, but balked at eating macaroni and cheese, saying it was too hard to chew it and swallow.

This morning, we put it to the test.  She had oatmeal... Soft, squishy oatmeal, almost the exact thing she had in the cookie, but wet and squishy... But we also added a consequence, knowing now that she COULD chew, but was just choosing NOT to chew and swallow.  She even made a mistake on the way to breakfast when she told me she just wouldn't eat.  I asked her if she wanted to get better and go home, and she said she liked it here... So, it is now Katherine and my job to make here MUCH less fun when she isn't working towards our goal of going home.  Breakfast was timed, and the consequences for NOT finishing in the 30 minutes was a modified "Mellow Plan."

The Mellow Plan at the Kartini Clinic is extremely limited, minimal physical activity, usually reserved for patients with anorexia who have very low blood pressures and are designed not to put stress on them through physical activity.  Our use was to make our daughter NOT have nearly as much fun at Ronald McDonald House.  Her Mellow Plan was to be confined to her bed from breakfast to lunch on the grounds that we knew she could eat, but chose not to... And that is RIGHT where we ended up.  She ate maybe a bite of her oatmeal, and drank her milk, and that was it.  So, Katherine and I had a very frustrating morning, but then, we got to sit and read the rest of the morning in the room.  It was actually very relaxing.  Amelia was NOT pleased at all and tried to argue that the doctors didn't require her to be on the Mellow Plan and that she was going to tell them at the clinic (to which we replied "don't worry, we will tell them ALL about it..." and that shut her up RIGHT quick...).

Along comes lunch time... She got to pick her meal, a cheese quesadilla with a banana.  At first, we were going to time the meal.  At Kartini, it is 30 minutes each for breakfast and lunch, and 40 minutes for dinner.  We were going to stick to that.  And then, we adjusted it some and said as long as she was consistently making an effort to eat her lunch, she would get to be off the Mellow Plan for that afternoon, and we (she and I) would go to OMSI.  It took a little more work than I would have hoped, but she ate a quarter round of cheese quesadilla, and all of her banana.  I think it took about an hour, but it was progress over yesterday and progress over breakfast.  She now knew we meant business.

On the up side, she and I got to go to OMSI.  I haven't been there since it was still up near the Zoo.  We went through the various exhibitions halls, which were a little disjointed, and not always as interesting for a kid her age.  SOME of them were a little more fun (especially the ones with water and sand).  Then, we went to the laser light show, which she first complained about having to wait 10 minutes in line, then was entirely blown away by the actual show.  She kept on saying "mommy is really missing out!  I'll have to let her know how much she would have loved it..."  After the laser light show, we took the tour of the USS Blueback, the submarine docked next to OMSI.  It is a small diesel electric sub.  VERY tight quarters for about 80 guys.  Interesting for me to go down through it.  Amelia enjoyed most of it, but parts were scary, especially where she had to go across grates or plexiglass in the floor, or where there were loud noises.

We finished off OMSI with a visit to the Gift Shop, where she found a new friend for her (Gracie, the wolf, about a foot tall stuffed wolf) and Pine the T-Rex, which we got for mommy (and Amelia told mommy she had to snuggle with it tonight).  Amelia also wanted a little poseable figurine that can just be played with or used for stop-animation filming, in green of course.

We got back just in time to take part in the dinner provided, a pasta casserole with salad and garlic bread.  Amelia complained a little, but then ended up eating about 2/3 cup of the pasta salad and all of a slice of garlic bread.  It was more than she has eaten in a sitting for us in a LONG time.  She also did this with minimal fuss in about 30 minutes, giving us time to finish off the evening with a game of "King of Tokyo" (thanks Ken, it has been a HUGE hit).

So, overall, the day started out rough, but ended on a much better note.  Herself is learning that yes, she is smart, but we do catch on, and we are smart and experienced.  I am hoping this will be the start of good progress for her, the start of a realization that here is NOT just fun and games, and if she isn't working towards getting better, it will be a WHOLE LOT less fun and games... 

Thank you for all the prayers.  I know that is a big part of the reason for the improvements today, for Katherine and I keeping our sanity as long as we have, and for the bursts of happiness and enjoyment during this time.  Thanks and please, keep it coming.

Day 23 - Food Fight, And Not The Fun Kind

We were told yesterday to offer Amelia meals this weekend.  We were told not to worry about focusing on crunchy foods, but to not let her use her drink to swish out her mouth or anything like that.  We were also told how well she had done for Amy and Jessica, eating a whole piece of french toast, half her strawberries, half her milk.  We thought this should be encouraging.  We knew she wouldn't eat everything, but it seemed like she has started eating SOME things.

Now, we are trying to figure out what they are doing differently at the clinic than what we are doing, or if we are approaching it wrong, or WHAT we are doing that isn't right, or even worse, if Amelia is playing us because she knows she can...

Breakfast this morning, scrambled eggs, breakfast sausage...  She had a couple nibbles of eggs, had a bite of the breakfast sausage, and then complained that it was too hard to chew and swallow it, and spit it out.  She had a snack of a 2 oz. package of gold fish crackers and had NO problem chewing and swallowing those.  Lunch time, she said a tuna melt sounded good.  I made her a tuna melt with an Asian pear slice, and a slice of Gouda cheese.  The cheese got eaten with no problem, but the tuna melt and the Asian pear got tried, chewed, and discarded.  mid-afternoon, she had some more gold fish crackers, and again, no problem chewing and swallowing them.  Then, later, Katherine let her have an oatmeal cookie, and no problems biting, chewing, and swallowing that.  We just finished dinner.  Amelia had macaroni and cheese, apple slices, and a slice of Gouda.  You probably know where this is going... the Gouda was eaten no problem, but the macaroni and cheese and the apple slices (which I even peeled for her) were too hard to chew.  In all, she had probably 2-3 mouthfuls of food today.  The good thing is she is still on Boost through the food pump at night.

The BAD thing is we are trying to figure out what is going on.  We want to give her the benefit of the doubt here, but her actions make us think that:

1. It was too early to start her on Bite, Chew, Swallow,
2. They are doing something VASTLY different than we are at the clinic when feeding her, or
3. She is playing us because we don't know any better about how she should be eating.

The REALLY frustrating thing is the longer it goes on, the more we think it is the last one.  The more we think it's the last one, the more frustrated and angry we get...  We have put all three of our lives on hold to be here for her.  Our pets are all living without us, being watched by someone else.  Our house, my car, everything else is sitting there.  My work schedule is sporadic because I have to spend some days at the clinic.  Amelia's schooling has been disrupted and her friends are missing her.  So many things are all pending her improving, and she is choosing not to swallow because it isn't cookies and cheese that we are feeding her...

I can't help but snap at her when she is asking "what can I do?  I want something to do..."  I want to tell her that if we were at home, she would have all her toys to play with, she would have her art cart to play with, she could go up and play in her play room, or all kinds of things, but because we are HERE... She can only do whatever mommy and I are willing to trail along and supervise (as she can't be running around Ronald McDonald House unsupervised).

In the parent toolbox, they talked about this time as "Life Interrupted" which is accurate.  The big frustration right now is that it feels like she is fine with the pace of things here during life interrupted and almost like she is now trying to use it to get us to just feed her the things she WANTS rather than the things she needs and should be eating.

Needless to say, BOTH Katherine and I are on edge and a little frustrated.  It doesn't help out our relationship with each other, it doesn't help out our relationship with Amelia, and it is rapidly wearing both of us down to nubs.

Please pray that Amelia with have a mental breakthrough, that something will get the thought through her head that it is in her OWN best interest to start biting, chewing, AND swallowing for us.  I have been more and more tempted to remind her that her NG tube is only good for about a month to 6 weeks, and that time will be coming up REAL soon, at which point they will have to pull this one out only to put ANOTHER one in, in the hopes that might "encourage" her to start working a little harder.  I haven't yet, and I am trying VERY hard to hold that in check, but on days like today, when the stress and frustration are just ramping higher and higher... it is harder and harder.

Please pray that Katherine and I can exhibit calm and have a sense of peace about things.  Because right now, we don't... Our calm is very rapidly cracking.  Our peace, well it comes in little snatches here and there, and then rapidly slips away again.  I think we are both looking forward to next weekend where we get to go home for the weekend (with Amelia here with my mother) and go to the school auction, and have a little time to ourselves...  Oh, the days cannot fly by fast enough... 

Day 22 - I'm Exhausted...

I think the schedule here is starting to catch up with me... I wake up in the morning when Amelia's pump goes off, anytime between 4 AM and 5 AM depending on when we get it started.  If it is a weekend, at least I can go back to bed and not worry about getting up from there.  If it is a week day, and I am headed to work, I have to be up and ready by about 5:15 AM to walk up to my coworkers for a ride (so Katherine and Amelia have access to the car if they need it).  If it is a week day and I am not going into the office, I usually head up to the dining room around the same time to setup shop and start working remotely.  Then the whole day, either at work or here at Ronald McDonald House and at Kartini Clinic, doing whatever it is from working remotely to meetings with the doctor or nurse, to parent support group and family therapy.  Then, we get back to Ronald McDonald House.  We are now starting to have to figure out dinner for herself (even if she IS only eating a fraction of it) and for us, so we can all sit down together and have a family meal time (better for her moving forward for us ALL to be eating when she is trying).  Followed by a little activity until she needs to head to bed.  We try to get her in bed before 7:30 PM, sometimes by 8 PM.  I am usually finding that I am tired around that time too.  Once she goes down, then I have to wait for her to be asleep (usually 15-30 minutes) and then setup her nightly feeding.  Once that is done, I can lie down for a bit, sometimes get some sleep, sometimes not.  Until Katherine comes in, or until she wakes me up, usually around 10-10:30 to wake Amelia up and put her on the toilet (we had an incident of bed-wetting because she was SO out of it on her meds).  Then, sometime in the middle of the night, usually 1 AM or 2 AM, I am sometimes roused for another round of carry the girl to the potty.

I'm tired, it is all catching up with me.  I am sitting here just trying to finish this so I can get her feeding started, and then go to bed.  Hopefully, because she went potty before bed, she will be fine.  I just want to sleep MOST of the night.  It has been a long while, and I am just feeling a bit of strain.

On other things, we got Katherine's rental dresses for the school auction NEXT weekend about 4 days early (they were supposed to be here on Tuesday), so Katherine got to try them all on.  Two are the same dress just different sizes (her "primary size" and her "backup size"), and then the third one is a "backup dress" in her primary size.  I got to pick which one she will wear because she doesn't like how she looks in general, much less all dressed up.  I think she looked amazing in the primary dress in the primary size.  It is snug, sequined, and she just shimmers in it.  Very gorgeous.  Amelia likes the backup dress better (it is red, looks great on mommy), but as I told her, mommy is going out with ME, I get to choose.

Oh, yeah, how is AMELIA doing.  Still making attempts at eating.  We have a food journal now just to keep track of what she does (and doesn't) eat so they know at the clinic.  No real restrictions on anything, just document it.  Still a little frustrating how little she eats... I am hoping and praying the volume starts to go up again soon. Prayers...

Thanks all, I am calling it for tonight, before I crash.  Again, appreciate everyone who takes the time to keep up with our little journey here...

Day 21 - A Family Dinner

Skipping to the end of the day, we were able to offer Amelia her first dinner with us as a family in three weeks.  I will admit, I am more than a little disheartened by how little she ate ( about 1/5 of an oz of chicken, a raspberry, half a piece of bread with butter, a grape, half an Asian pear, and a cup of milk).  I am proud of her for making such a great effort at eating again.  Today, at clinic, she at a full piece of french toast, half her strawberries, and half her milk.  These are both very good signs, and I am so very proud of her for making progress.  I am just really disheartened by the pace of the progress...  It is exactly where she needs to be, but as much as I have tried and tried NOT to get my hopes up about her starting eating again, I did.  And tonight did not meet my hopes or expectations, and so, I have to swallow that down and NOT show her because she needs to know how great she is doing.

This is HARD.  It sucks.  I am feeling a bit low tonight.  :-(

What else happened today?  We had our family counseling session.  Last time, Leslie talked with us a little bit and then brought Amelia in.  It was a half hour session or so, and there was a little uncovering, but not much.  Today... Today was a doozie.  Almost an hour and a half, Amelia never was brought into the session physically.  It was just me, Katherine, and the counselor.  I think what came out the most was how much Katherine dislikes herself.  How little she values herself, in spite of how much I try telling and showing her she is valued.  It has been my constant struggle for 14 years of marriage.  I think that this whole process will force me and Katherine to work a lot on how she feels about herself and what I can do to help her feel better about herself.  I think that is the best thing we can really do for Amelia, help Katherine work on seeing herself in a positive light.  It was a very stressful, emotional day.

To end on a lighter note, I got to pick a new flower for Amelia's window vases...  I picked a King Protea... and put it in a very small vase...

I just find myself singing, ala Chris Farley from Tommy Boy, "Big flower in a little vase... Big flower in a little vase..."  It is a beautiful, HUGE thing...

Thank you all for prayers and support.  Sometimes, I wish I could spend a little more time with you in person.  Tonight is a night I could have used someone to just sit and talk with.  Amelia is asleep, and Katherine is somewhere making calls, or getting tea or something.  I am here in the room, finishing this blog up, wondering what next...  Tomorrow is another day, I am headed to work, catching a ride with a coworker.  

Oh, one last thing... Today is the end of our 3rd week here (day 21).  No real idea of when we will be done here... Praying, PRAYING it is sooner rather than later....

Day 20 - Our First Bites...

Today was an interesting day.  We woke up to a world of white, 3-5 inches of snow everywhere, and a 2 hour late start at Kartini Clinic, as well as rescheduled meetings because people would not be able to make it in to the clinic.  In spite of this, around 10 AM, we got to Kartini, and secretly handed off a couple of pieces of French Toast and a handful of strawberries to Amy, one of Amelia's group therapists.  Then, we went back to Ronald McDonald House and figured we would hear more when we picked Amelia up.

Because, today was the day.  Today was the first day that Amelia was going to try eating since she got her NG tube in.  She has been not having to swallow for almost 3 weeks other than clear fluids.  We were hopeful, but didn't want to get our hopes up too much.  So, when Katherine got a call from Kartini, I am sure she was concerned.  But, the call was Amelia, who was so proud of herself that she couldn't wait until the end of the day to tell mommy.  She had eaten half of a piece of french toast, a couple of strawberries, a few sips of milk, and all of her butter.  It was by no means a meal, it was not enough to keep her nourished on it's own, but it was a huge step in the right direction.  We wanted to cheer, to jump up and down, to celebrate.

So, now what?  We asked at the clinic what we should expect next, if we should be trying to feed her back at Ronald McDonald House, what...  We were told that for the time being, no, they would be the only ones feeding her, and they would slowly start to do that a little more each day.  Once they feel she is doing okay, I am sure they will open it up to us feeding her as well, and possibly even her eating breakfast and lunch with the other kids.

Personally, I am waiting to hear that we have the all clear because I want to take her to a really cool local ice cream place to celebrate!  We are so happy that she is progressing!  We are again just trying NOT to get our hopes up too much, because it can still be weeks before we make enough progress to even think about taking the tube out, much less heading home.

Thank you all for the prayers, the good thoughts, the encouragement, the support.  It has meant everything to us.  Some days, we have just needed a little word, or a letter to make Amelia smile.  It has been difficult in it's own way, long and frustrating, but the help of friends and family has made it well worth it.  Thank you all.

And just a little piece of beauty to end on, this is the tree out in front of Ronald McDonald House East all covered in snow...  It was lovely!

Day 19 - Day 1 of Snowmaggedon 2018!

Yes, we are actually getting some snow here in Portland.  It was off and on throughout the day, and I came home from work early to try helping Katherine and Amelia to clinic, but I was too late.  So, I stayed at Ronald McDonald House and just worked remotely.  I even managed to get some work done.

When we walked (yes, walked) to clinic to pick Amelia up, we got some good news and some bad news...  The good news, they are planning on testing out eating tomorrow with Amelia (lots of prayers for this as we want this to go well).  The bad news, due to the weather, clinic MIGHT be closed tomorrow... I am sure that would just mean that they postpone trying food until clinic is open again.  The one issue with that is Amelia's choice of foods to try...  She is really excited about the idea of French Toast.  That is one of the few things that they cannot do in the Kartini Clinic kitchen.  So, Katherine made up a couple of pieces of french toast tonight as a "test run" for when Amelia is eating again (at least that is what Amelia was told because she doesn't know about tomorrow).  A couple of those will then go to Clinic tomorrow for Amelia to eat (hopefully) later in the day, along with 5 or 6 nice, whole strawberries.  Here is hoping...

So, the snow is beautiful.  As I am writing this it is deepening to upwards of 3-4 inches right now, and even though WE are within walking distance of the Kartini Clinic, that doesn't help if the people that WORK there can't get there...  Tomorrow might be a snow day of hanging around Ronald McDonald House trying not to go crazy, and trying to get SOME work done remotely.

One of the girls from Amelia's group went home today.  This is a really good thing, as it means they feel she is recovering enough to head home.  We talked a little about this with Amelia, that it was good her friend went home, and someday they will be ready to let Amelia go home.  I am still trying NOT to get my hopes up too much that the day will come a lot sooner than later.

To close, prayer requests:  Pray for Amelia's first attempt at eating again.  She says she really wants to, that she misses eating, that the french toast smelled REALLY good, and we hope these are all good signs...  Pray that we are accepting whatever the outcome might be.  I SO want her to take to it easily and immediately and start rapidly to recover from here, but I am so afraid that if she doesn't I will be disappointed.  I kind of feel myself setting myself up for disappointment just in case.  I want her to excel with this, I want her to be able to head home soon.  I just don't want her to feel that I am disappointed with her if it doesn't happen sooner rather than later.  We are committed to being here until she is better.  Lastly, pray for the people at Kartini Clinic, in their daily work with these kids.  Not just with my child, but with all of them there...  The job the people at the clinic do is so important, helping these children who are afraid to eat, anxious about it, having fears and strong emotions about eating too much or too little to the point they make themselves sick...  Be with each of the employees.  Keep them safe, give them strength, courage, and a kind heart.

Thanks all.  Here is to hoping this blog doesn't last too much longer...

Day 18 - Sleep? We Don't Need No Stinking Sleep!

The good thing is Amelia slept the whole night... The bad thing is I didn't...  I was woken up a few times by the wife, and then by Amelia.  The stress of living so close together, being stuck in a very tight routine without much way to get out and get a break, and all of that is just getting to both of us.  Katherine feels she needs to stay here and do EVERYTHING that needs to get done.  I have asked and will continue to ask for a list of things that she wants done on a daily basis so I can be helping.

I feel guilty for wanting to get out and do something to just relax and get away for a bit because she won't take time to do that.  So, if I take time for myself, I feel selfish and like a bad husband because I am at least getting to go to work some days, take time out of here to do work stuff.  It isn't exactly taking time for myself, but it is getting out of the same tight routine.  I just wish she would take an hour or two and go somewhere... to read, to sit, to just not be here...  I need someone to come kidnap her for half a day just to make her get out for a little while.  It would do her good.  Right now, her stress rubs off on the rest of us, and the last thing we need to be doing is adding additional stress...

On top of all that, Amelia wet the bed last night...  Not something she has done for a LONG time.  We can only think that it is partially the medication she is on, partially because she has adequate nutrition so she is sleeping so much deeper than she has been.  For whatever reason, about 2:30 in the morning, I wasn't sleeping, and I went to check on her and discovered this...  It is a whole different process to change a kid who is attached to a food pump.  Shut the pump off. Unplug it.  Cap the food bag end.  Close the NG Tube end.  Remove all the wet clothes.  Wipe her down.  Redress her in clean clothes, re-attach the tube and start the feeding again while you go strip the bed and figure out what she is going to sleep on.  We now have an extra set of sheets for the bed just in case...

On a positive note, I went back and visited the dogs today.  Blitzen and Zephyr are raging idiots as ever.  I got them a new dog chew toy to play with (a large "indestructible" cloth bull, like the "indestructible" pig that Zephyr utterly destroyed), gave them lots of loving and petting, and then almost cried as I had to leave and they were whimpering.  I went to visit though because they needed more food, and the real good news, I had to pick up a check for a $1000 from Child in Crisis fund for Amelia's medical expenses.  Big thank you to our St. Rose Family for getting us connected with that group.

I think that is it for today... I am really tired.  It has been a very sleepless night, followed by an emotional frustrating and tiring day, followed by two long drives in close succession...  I just need some sleep... and a drink... or four... Prayer would work too.  Lots and lots and lots of prayer.  Thank you all.  I try to be really positive, but even I have tough days from time to time...

Day 17 - The Calm Before the Week

It was a relatively laid back day.  Snow at home, some snow mixed with the slush and rain here, but nothing sticking.  We still had Joe, and Erika, and Joe and Dan here visiting.  They played some board games with Amelia, and Erika went on a scavenger hunt with Erika.  While they were doing that, I took to time to make a key for the Scavenger Hunt pictures for the volunteers at Ronald McDonald House East.  I have heard kids ask them a few times "do you know where this is?" and their response was usually "No, I wish we had a key..." so now they do.

I got out for a 3 mile walk during a sun break, and that was nice.  I even got to spend a few minutes enjoying the sunlight.  Once I got back, we watched a little Olympics, and then went down to dinner.  Amelia was starting to express that she is starting to miss eating.  This is a good sign because she should be at or almost at her goal weight, and the next discussion is when she will be ready to eat again...  Desire to eat is a big part of that.  We will meet with Dr. Moshtel tomorrow and hopefully get an idea how they feel about this at that point.

We still have some hiccups dealing with a 6-year old girl.  We have to be careful NOT to be overly lax with her because of what she is going through.  She still needs to behave, she still needs to answer us and help out.  For the most part, she is pretty good about this, but some times, some times, she is a 6 year old kid...

The best thing is we are seeing our little girl again.  She is full of energy, bouncing off the walls, smiling, playing, being creative (the women of Chick Flick will be happy to know she created a Peacock this evening because she LOVES her stuffed peacock so much).  Though, on the down side, the very headstrong and sometimes argumentative little girl (that is ALSO our little girl) comes out again...  I guess we take both together.

So, tomorrow starts week 3 of clinic.  We have parent support group tomorrow morning, and a meeting with the doctor tomorrow afternoon.  Hopefully, we will get an idea of how close we are to the next step at that point.  Then, Wednesday, we have our meeting with the family therapist, and our meeting with the nurse as a follow-up to how Amelia is doing from a vitals standpoint.

As we head into another week, I would just ask for prayer that Amelia is ready to start eating again soon, that we can start the transition from the feeding tube to full eating again, and once that is accomplished, we can head home.  I would love to think it might only be another couple of weeks, but it might still be a month or more...  Pray for patience during this time, pray for strength for us to not start pushing for results sooner than Amelia is ready.  I think the hardest thing is to NOT get our hopes up and just wait on the Lord and His timing.  Thank you for the support, the prayers, the visits, the notes and letters.  It is all so much appreciated.

Day 16 - More Guests!

Hello all.  Today, we had a number of guests, from Amelia's classmate Hailey and her family, and Amelia's Uncle Joe, Aunt Erika and twin cousins Joe and Dan.

But going back just a bit, I posted this to Facebook as well, just a picture of the nightly feeding.  The bag hung, the feeding started, Amelia asleep.  I look forward to when I don't have to do it any more, but I am still glad that we have a way to keep our little girl fed.

Each night, we go through the same steps.... Once Amelia is asleep, we aspirate the NG Tube to make sure that it is in place (either pulling some stomach contents, or if that doesn't work, listening with a stethoscope, use a syringe to push air into her stomach).  Once done aspirating to confirm location, then fill a bag with 4 Boost Plus, hang it and thread it through the pump.  Once it is through the pump, turn it on, confirm we are using the same settings, and then auto-prime it.  Once the bag and feeding tube is primed, then plug it in to the NG tube, and start the process.  2 hours later, once one full Boost Plus has been fed, add the 5th and final one.  Total of 1800 calories a night.  It isn't optimal, I look forward to being able to share meals with my sweet girl again, but it is better than watching her waste away...  Still, it makes me a little heart sick, and I look forward to when we can put this chapter of our lives behind us...

Done with that, on to the fun of the day.  Amelia was up EARLY (a little before 6 AM this morning) and we were up and around doing things.  She was excited because Hailey was coming for a visit.  Eventually, she wore herself out a little and had to have a bit of a lie-down.  Then, when Hailey finally showed up, we got to give them the tour, and then me, Amelia, and Hailey went on a scavenger hunt.  Shortly after that, and some time in the craft room, Hailey had to leave, but we got an e-mail this evening saying she would love to come back when the weather was nicer.  We look forward to that.

Then, after a trip to New Seasons by daddy to get the princess more Apply Juice, our next visitors showed up.  Uncle Joe, Aunt Erika, Cousins Joe and Dan.  They had a "little" surprise for Amelia, a stuffed caterpillar in Valentine colors... Can you find it in the stuffed animals on Amelia's bed?

(psst... it MIGHT be a little tough to find... It is the red pink and white one....).  Needless to say, I am starting to think my mother is right and it will require a U-Haul rental to get all of Amelia's stuffed animals home...

Also, we had to have a picture of Amelia and her cousins, for posterity and all...

They are both 16, and right around 6' 3" or so... Just an inch shy of their father's 6' 4".  They get along pretty well with Amelia, and finished off the evening after we all went out to dinner by playing Monopoly with Amelia (thank goodness Katherine and I didn't have to play it with her... again... and again... and AGAIN!!!).  Joe, Erika, Joe, and Dan have since headed to their hotel for the evening.  Since they are close family, and since they made the trek down from Seattle, they are staying the night and coming to hang out with us part of tomorrow as well.

Last little bit of news, regarding how Amelia is doing.  Vitals were taken on Thursday, but we didn't ask Sherrill how Amelia was doing, but we should see the Doctor on Monday afternoon, and that should be well after Amelia has had her vitals taken, so hopefully we should know if she has made her goal weight.  She should be close if she isn't already there.  Once she hits her goal weight, then we start looking at when she will be ready to start the process of eating again.  This could be in the coming week, or the coming month... The experts are keeping an eye on her and will let us know when they think the time is right.  Until then, we will be here, waiting, hoping, and praying.  The end is in sight, sort of...  It is more like we can hear somewhere in the tunnel the sounds of the outside, though we can't quite see the light just yet... We know the tunnel opens up eventually, we just aren't quite there yet... Soon... very soon.

Thanks again to all the friends, family, and others who are keeping up with Amelia's story, who are sending gifts or cards, who are praying, sending good karma, good thoughts, all of that.  It is appreciated, it is felt, and we are thankful for every one of you.  Thank you so much.

Day 15 - Some Good Financial News!

Today is officially 2 weeks of us being here (I must have started the blog on day 2 of us being here... or started a zero-based numbering system, either way).  2 weeks ago, Amelia got her feeding tube in, was exhausted, scared, restless, and we were stressed, scared, frightened.  It is amazing how much difference 2 weeks makes.  Now, Amelia has settled into the rhythm of things, going to Clinic Monday through  Friday, spending the weekend at or around Ronald McDonald House seeing friends and visitors.  We just finished up the last of the parent "training" and such.  Now we start our regularly weekly/biweekly meetings this next week with Parent Support Group Monday morning and a doctor visit Monday afternoon.  Then Family Counseling and a visit with the Nurse on Wednesday.  If Amelia makes her goal weight by Monday, then Tuesday the staff will start to discuss when they will start Bite-Chew-Swallow where they will work on retraining her to eat.  It isn't an immediate thing, it is dependent on when they think Amelia is ready for it.  So, we will be patient and rely on them.  They have been amazing so far, no reason to doubt them now.

Now, onto the good financial news.  We have had all kinds of love and support so far.  This all happened about the time I got our tax return, which wasn't huge but let me set aside $1000 for Amelia's treatments.  We have also been doing the Dave Ramsey Debt Snowball and were putting about $300 every paycheck (every other week) into the next major debt.  That money is now being reallocated for Amelia's treatment until further notice.  We also had our friends at St. Rose PTO put out a Medical Fund jar with raised just under $170, and then my good friend and PTO boss Collette added another $200 to that.  My church sent us a gift card to help with incidentals like food and gas that was more than I was expecting.  I even setup a GoFundMe, just in case there were people reading this that wanted to help but weren't sure how, and that has just reached over $100, which if we don't use will get donated to Ronald McDonald House to help other families in need.  And now, I got a call today from the Children in Crisis fund that I was recommended to apply for, and they have a check for $1000 for me to pick up next week to help with all of this.  God is amazing and has been there every step of the way to help us through this...  From lining everything up just when we needed it for us to come down here (the Kartini Clinic opening, the Ronald McDonald House opening, and then the dog sitter stepping in to help).  Everything just lined up to make sure we could be here.  His provision has been amazing!

Lastly, though some people might not see this as such a big thing, but my favorite coffee place, that I have been a supporter of for 2 and a half years as part of their roasters club, they donated 4 bags of coffee along with my biweekly roasters club bag...  All for use here at Ronald McDonald House... so we have GOOD coffee!  I highly encourage anyone else who loves good coffee to check them out.  They have a storefront in downtown Vancouver, or you can join their roaster's club and get one or  two bags monthly or bi-monthly.  Check them out at Relevant Coffee and I guarantee you won't be disappointed.  Mitch, the owner and the roaster is an artist with a coffee roaster, and draws a mean espresso as well.  HUGE shout out to all my friends at Relevant for the donation.  I love me some great coffee!

Thank you all who have continued to follow along.  It is nice to know that others are out there who have an idea what we are going through.  Your prayers and thoughts and concern are all greatly appreciated.

Day 14 - Pretty as a Peacock

Today was our final day of Parent Toolbox meetings at Kartini, and tomorrow starts a more regular work schedule for me...  I have a built-in alarm clock too as Amelia's food pump goes off between 5:10 and 5:40, depending on when she falls asleep and we get her feeding started the night before.

I will miss the morning meetings, getting to talk to some of the other parents, but we will still have weekly parent support group, meetings with the doctor every two weeks, and meetings with the Nurse and the Family Counselor every week.  Still lots of interaction, and time with Amelia around Ronald McDonald House, and weekends, and very little if any time to just get away and do something we might want to (for either me or Katherine).  We are both tired and frazzled and trying really hard to give Amelia and each other grace.  It is just hard to do sometimes.

I got an e-mail this morning from one of the volunteers at Ronald McDonald House.  The night before at the Valentine's Party, they had taken some pictures, and some were of Amelia decorating a cupcake, which she then gave to me because she couldn't eat it just yet.  The pictures turned out beautifully, as of course they would.

And today, after Amelia got home from clinic, she had a package waiting for her.  It was ANOTHER great reminder of why I love disc golf.  Amelia's VERY first tournament last year was the largest women-only tournament in the world, right in the Portland Metro area, called the Chick Flick.  It is run by a wonderful group of women disc golfers in the Portland area, and was just a blast.  When they heard about Amelia being here and what she was going to, not only did they share Amelia's GoFundMe on their Facebook page, but they sent Amelia a stuffed animal of the signature animal of the Chick Flick tournament, who Amelia has named Feather.

These women are just the best!  Amelia loves the peacock (and I do too!  It is beautiful).  It was such a bright spot for her today.

There have been so many letters, cards, packages, small and large, sent here to Amelia, and we appreciate every one of them.  Sometimes it feels like the room gets a little cluttered, but then we see the love and care everyone has included in each of these.

Her friends from St Rose School sent her Valentines, both as a class and some of them individually.  Her friends from church put together some activities for her as well as a bunch of Valentines for her as well.  My Grandmother put together a card and small activities for her.  Her Aunt Erika and Uncle Joe sent her some things to do.  Dynamic Discs Dyemax printed a disc just for her and then they all signed it.  We have a windowsill of cards and flowers and little notes and such just letting Amelia know she is loved, missed, and prayed for daily.  Whether she knows how much it means or not, we do, and we appreciate everyone who has taken the time to help brighten her day.  Thank you all.