People Are Awesome

Yeah, the joy of being home now is that I really got out of the routing of writing every night, so sorry if my blog posts are a little more random.

Some good news to start with:  Amelia has been back at school for three days now, even finished up her homework for the week last night after getting back from her first doctor's appointment with her new pediatrician.  She was 68+ lbs and 4' 4" (that is an inch and a half or so since last time she was measured in August).  She is definitely back on the growth curve and doing great.  Considering that she only seemed to grow about a fraction of an inch while at Kartini...

Also, the last couple of nights, she and I have been working out our disc golf schedules for the year... It tends to be easier to get out to events for her because that gives mommy the weekend (or at least the day) to herself, where when I go to events, it means Amelia is with mommy ALL Day (or weekend).  So, it also means I have to get creative.  That being said, we have about 6 events planned for Amelia to participate in, from Lucy Burks 3 Oregon Junior Series events and her Oregon Junior Championship, to a couple of Chick Flick events, Going Global and THE Chick Flick.  I am even working on getting shirts made for us... The initial design is a bit bright and out there, but the more you look at it, the less ostentatious it seems.

In other things, why are people awesome?  Because in spite of their problems, some people are just so awesome that they will go out of their way to help you out.  We have been getting eggs from a local woman who has become a good friend.  She and her husband have been going through their own struggles and medical problems over the last year or so, and I know they have been having some tough times.  In spite of that, today when Katherine went to pick up eggs, the lady would take no money from her, and when Katherine opened up the eggs, there was a $100 bill stuffed in there.

Sometimes, I just want to give the money back to people and say "but you need this so much more.  We will figure something out, we will manage..."  but I have long learned that if people are going out of their way, sacrificing of themselves to help you out, the best think you can do is accept it, thank them, and let them be a blessing.  It really isn't about you.  It is about them feeling like doing something good.  Like giving to others.  If you really DON'T need the money that they have given you, then pass it on to someone else.  Let that person be a blessing to you by giving you a chance to be a blessing to someone else.  I think the world would be a much better place if a few more people would be willing to think that way...

But, for today, people are awesome, and every day, something happens to make me believe in humanity just a little more and more.

Back Home

I realized I forgot to post yesterday.  I think part of it was just being so tired, so drained from finally getting home, and from everything that we had to do once we got home.  Things that you never think about when you have to up and leave suddenly for medical issues...

We had to clean out the refrigerator... I don't mean toss out this or that.  I mean pull out the heavy duty contractor garbage bag and fill it with almost everything in the refrigerator.  On the up side, I took all the drawers out and washed them, wiped down the inside until the whole thing sparkled, and now the refrigerator is nice and clean.  Katherine is slowly working on filling it back up now.

We were out of pellets for the pellet stove, and our usual place to get them was out, so I had to go looking for some today.  I finally found them at Home Depot (woohoo!) so now Katherine and Amelia (and the dogs) won't have to wake up to a frigid house (me on the other hand... well someone has to get up and get it going).

Amelia was glad to be home.  She ran up to her play room for a while and got reacquainted with everything.  The best part is she seems to be eating like our little girl again.  Tonight for dinner was top sirloin steak with mashed potatoes and steak juice on the potatoes, broccoli, and milk...  And she ate quite a goodly portion of all of it.  Good to see her enjoying dinner again.

Lastly, Katherine kept on marveling at the fact that we could all be so close here, yet not right on top of each other, and not where we had to constantly SEE each other (or have one of us with Amelia at ALL times).  It was a nice change of pace.

It was a late night for Amelia, as she didn't get to bed until late, and Katherine didn't get back from the grocery store until late, so that made dinner late and everything else with it.  That's okay because Amelia didn't have to go to school today, but it sounds like she IS going back tomorrow.

I think that is it for the most part.  I went back to work today, actually feeling like I was getting back to a relatively regular schedule.  It felt good to start getting back into old routines.  I did have to stop by the old pediatrician's office on the way home to sign the paperwork to send all Amelia's information to the NEW Pediatrician.  The receptionist who has known us since Amelia was born and has watched Amelia grow asked why we were changing.  I had to make up some reason of the new pediatrician was recommended by Dr. Moshtael for follow-up care and such...  I didn't want to say "because if her original pediatrician had seen this weight loss, she would have been glad, not alerting us to some kind of problem..."  It is what it is.  We will go somewhere where we feel Amelia will be best cared for.  At this time, Katherine and I aren't changing doctors, but no idea about the future.

Working on planning summer projects and vacations and the like.  Trying to figure out where we want to go and when, and what we are doing project wise and otherwise around those things.  Looking at getting life back on the rails!

Day 37 - Preparing for Homecoming

No, not the dance (that's usually in the fall anyway), but for all of us to head home from Ronald McDonald House and Kartini Clinic and get back to our regular lives.  This entailed me getting up early (I was out the door before 5 AM this morning) to head up to Kelso to get the house ready for all of us to come home tomorrow.  I had to do the recycling so that the delivery guys could deliver and install the new clothes dryer.  I also had to meet a friend at 8 AM to see what we needed for installing the new water heater he was going to help me pick up and then help me install.  Lastly, I needed to do some cleaning around the house to make it a little nicer to come home to.

So, I got back to Kelso right around 6 AM, and luckily our house sitter is an early morning person too.  He took off and left me to it.  I got all the recycling packaged up, thrown in the back of the Pilot and dropped off in plenty of time to get back and be ready to start on the water heater project.  As we were pulling away from the house for the water heater, the delivery guys called for the dryer.  I let them know the regularly scheduled window between 9 AM and 1 PM would still work best (they were running early and wanted to know if they could come by).  We made it to Home Depot and got the water heater and other pieces we needed to get it all hooked up, and then headed back home.  Pulled into home to see the delivery truck there, so my friend from church (Steve Jones, thanks so much for the help today!) went in and started draining the old water heater while I handled the delivery guys and getting the dryer situation handled.

Once the dryer was done and the delivery guys were gone, and the old water heater was in the process of draining, we brought in the new one, unboxed it, sized things up, and then we waited....  and waited... and waited some more... a 50 gallon water heater takes a LONG time to drain...  Once it was mostly drained, we hauled it outside, left in on the porch to drain any remaining amount out, and then we went through the process of installing a new one...  You know how it takes a long, long, long, long time to drain a water heater?  Well, it also takes a long... long... long... long time to fill one too... But got it installed, got it filled, Steve flipped the breakers and nothing blew up, and then we set it and let it run.  I helped Steve get the old one in the back of his truck, and he said he would get it to the dump for me so I could get on with getting the house ready.

From there, while the water heater was heating up, I went and ran some errands (dog food, a drain pipe for the overflow valve on the water heater, and some LEDs for the bathroom), then came home and finished the last bit on the water heater, and then did some general pick-up around the house.  Finally, I vacuumed and mopped all the floors (ALL of them, dining room, kitchen, living room, hall, bathroom, and both bedrooms).  While this was going on, the water heater had come up to temperature, and I was running the washer through a drum cleaning cycle to make sure any sediment in the hot water lines was gone...  Once that was done, I had to wash Amelia's bedding because it looked like a dog had been sleeping in her bed (and probably had been).  Once that was done, I made Amelia's bed, made sure the dogs couldn't get back into her room, fed them, and headed back to Portland.  I got back to Portland around 7 PM.  LONG day...

While I was doing all this, Katherine and Amelia were entertaining visitors, going for a 3 mile walk to OMSI, spending a LOT of time in the Turbine room at OMSI, walking back, eating, and having a fun day, celebrating their last full day here.

So, it was a long day and I am tired, but feel better about all of us arriving at home tomorrow with the house (relatively) clean, Amelia's room ready to go, a new water heater, a new dryer, and time for us to get back to a regular life!  Woohoo!

Thank you all for following our adventures.  As I said before, I will keep this blog going as we travel through Amelia (and us) transitioning back to normal life and the struggles there.  Thanks for the prayers, well wishes, good thoughts, positive karma, and all of those things.  Our St Rose and East Hills families have been amazing support, as have the Chick Flick Women and other disc golf groups in the area.  You guys all rock!  Thanks!

Day 36 - Celebration!

The journey is not over, we still have lots of work at home to do, but today was a day of celebration.  Today was Amelia's last day at the Kartini Clinic.  She went, they had a bit of a party for her, and then we picked her up.  She said her goodbye's, gave hugs, and then we left.  We are staying at the Ronald McDonald House through the weekend, so we went back there. 

For dinner tonight, we went out and had pizza, and finished the evening off with ice cream.  It was a great evening and Amelia had a wonderful time.  She seems happy to be heading home soon.  She has plans for the weekend, including OMSI, and just having fun her last weekend down here in Portland.

Me, on the other hand, have a fun Saturday ahead of me of getting the recycling taken care of, getting a new water heater installed, getting a new dryer installed, doing some cleaning around the house before Katherine and Amelia come home on Sunday, and then driving back down to Portland so we can pack up and head home on Sunday...  My weekend is going to be quite busy...

But it still feels good to know she is done here.  Watching her eat tonight, I don't remember a single time having to tell her to chew and swallow.  She ate a goodly amount, she ate, drank, swallowed all relatively reflexively.  She did amazing.  I was so proud of my little girl tonight. 

So, it is late, we just got back (Amelia and I, mommy is walking from ice cream with our visitors), and I just got Amelia in bed.  Now, I am packing some things up to pack into the car tonight so that tomorrow morning when I leave EXTRA early, I can take a bunch of the stuff home with me that we don't need here over the rest of the weekend (like a LOAD of stuffed animals....). 

Thanks to everyone for keeping up on Amelia.  As we head home, these entries might not come as frequently, but I will continue to try updating how Amelia is progressing, any setbacks, any struggles, and things of that sort.  Thank you all again.

Day 35 - It's The Final Countdown...

You know you want to....  And you know it was already running through your head, just from the title... Well, this is about how it feels for us tonight... Tomorrow is Amelia's last day at Kartini Clinic.  We had our doubts and our concerns, but I think we are all resigned to and ready for Amelia (and us) to head home...

Katherine tried talking to Sherrill about our concerns this morning, and she came away from that feeling disappointed and unsatisfied with the results.  We still felt like we were getting different stories from different people, and different criteria for discharge.  So, I sat down, typed out an e-mail and sent it to Dr. Moshtael, Sherrill, and our family counselor, Leslie.  A couple of hours later, Dr. Moshtael called me on a conference call with Sherrill and Amy (Amelia's daily therapist) to go over the concerns, and make sure we were all on the same page.  The results of that were:

1. Amelia's weight at her vitals today was 66.4 lbs, up a pound from Monday (and this was SUCH a good sign, for me at least, that she is doing well)
2. We can feed her anything, including a shake if we need to, to make sure she is getting enough food.  We just don't want to LEAD with the softer foods and things like that or they will become her go-to meals.
3. Because of previous concerns, and Amelia's young age, they kept her there a week longer than they normally might.
4. If things don't continue to improve, we are going to a new pediatrician who is very familiar with Kartini, and we can always go back if we need to.

So, now what?  Well, Amelia is officially getting discharged tomorrow, but some visitors were already planning on coming this weekend, so we (mainly Katherine and Amelia) will be staying here until Sunday.  I will be heading back to Longview/Kelso area Saturday early sometime to do the recycling and get ready for a new dryer to arrive.  After that, I will probably do some cleaning around the house in preparation for the girls coming home on Sunday.  Lastly, I will head back after the dryer arrives to spend our final night at Ronald McDonald House.

A bright point today as well, Katherine's Aunt Mary Lou called.  She has many times been like a mother to Katherine and has always been one of our most loved relatives.  She is such a wonderful person.  She apologized for not being able to help more, and then told us she was going to send us a big enough amount of money to cover the remainder of Amelia's Kartini Clinic bill.  It was amazing.  It was entirely out of the blue, and it was the best thing financially that could have happened.  Thank you so much Aunt Mary Lou.  We all appreciate it so much.

Now, it is just getting through the last couple of days, and next week, we will be at home.  I intend to continue this blog for a while though, as we adjust to a new life at home with the changes we have been through and how Amelia does in this new/old environment.  More to come....

Day 34 - The Good, The Bad, and The Ugly

The Good:
Amelia got her tube out today.  Her face is red where the adhesive was, but it is out, and she is so happy that it is out.  We have been told that Friday will be her last day there.  She is eating again, she is able to bite, chew, swallow, which was their goal, and she is doing that.

The Bad:
Katherine is very concerned that Amelia is NOT eating enough to sustain her weight without the tube feedings any more.  Since we took her off tube feedings, her weight has gone down from 67.6 lbs to 65.6 lbs.  We don't know if this is within the expected range or not, and if this is going to stop soon or not.  We don't know when this is supposed to level out, and she is supposed to be back to sustaining her own body weight.  In spite of Friday being her current last day, we don't know if her vitals tomorrow will track with that or not.

The Ugly:
So much tomorrow will depend on her vitals and what her current weight is.  We have been told by the doctor that we want to get Amelia eating 100% before she goes home, but by the nurse we have been told that she is swallowing again, and THAT was the goal, and she is ready to go home, even if her weight isn't maintaining.
From the doctor, we have been told focus on crunchy foods, get her used to eating things with texture, not mechanically processed soft foods, and we want to get her back to 100% of her food intake orally.  The nurse and nutritionist tell us however we can get calories into her, whether that is a smoothy, yogurt, etc...
Tomorrow, we are gearing up to possibly have to do some battle with the clinic to make sure Amelia is here as long as she NEEDS to be, not just how long they think they need to keep her.

Prayers for tomorrow, for a good outcome, for God's guidance with whatever may come.  We want to get home, we want to get back to regular life, but we want Amelia to be back to eating enough on her own as well before that.

Day 33 - Frustration and Waiting

Yeah, that was pretty much today...  While at lunch, I got a call from the Family Therapist at Kartini Clinic, and about half way through listening to the message, Katherine called to tell me what it was about.  The good news:  Amelia's tube is definitely coming out tomorrow.  The bad news: the insurance is only covering through tomorrow...  This seemed unusual because the doctor still feels Amelia needs to be there a little longer...

So, being a computer geek, I first tried to online chat with someone at our insurance.  That resulted in "your provider should really be requesting this information..."  So I asked for a number to call.  There, I got in touch with Jill.  I will say Jill was amazing.  She tracked down who I needed to talk to, even though it was NOT in the medical but in the behavioral health unit.  She said the person was not in, but gave me her phone number and extension so I could call and leave a message.  She also said she would send the woman (our case manager) an e-mail, and she would follow up with me tomorrow on it.

What information Jill WAS able to get me was this:  The doctor's office / the clinic had only requested 4 more days on the 1st of March because Amelia was looking good, and they thought the would be discharging her tomorrow.  But, over the weekend after that, Amelia did not progress as fast as we would have liked, so we now feel she needs to stay there longer.  The doctor's office just needs to call the insurance back and state this to get further authorization, at least that is my current understanding.  So, that is the current plan.

Now, we are again waiting for tomorrow, when the tube SHOULD finally come out, but we are also hoping that tomorrow we don't just get the handshake and "thanks for coming" from the clinic because the insurance won't cover something.  So we are gearing up for battle with the insurance tomorrow if necessary.  Hopefully not, but if we have to, we will.

Prayers for good resolution with the insurance, for better attitude from Amelia (she has been more and more difficult tonight about swallowing and such, making us just that much more nervous about the tube coming out...), for patience for us, and for grace on this whole process that it may occur smoothly.  Thanks all.

Day 32 - Hope is a Fragile Thing

This is amazingly true.  Coming into today, I was hopeful that Amelia would have her tube out by this time tonight, we would get the good news that she is progressing fine, and we would have had to argue for the clinic to keep her through next Monday.  I was hopeful that she was doing a lot better on her eating, that things were going really well, that we were handling what was coming at us relatively gracefully.

It is amazing how fast these hopes shatter...  We dropped Amelia off in the morning, and there really wasn't any mention of the tube at that point.  We spent the rest of the day going back and forth about what we would have to say to the doctor, and if I was behind Katherine in her desire to push for Amelia to stay a little longer to make sure she is doing okay.  Then, when we got to the clinic, the doctor discussed this with us and agreed that Amelia wasn't quite where we wanted her to be, and that we would keep the tube in longer (meaning the tube had NOT come out today), and that if she was eating well over the next couple of days, we would revisit taking it out at that time.  When they brought Amelia in and she still had the tube in, I almost cried.  I was so excited at the thought she would have it out today.  When Amelia realized it was not coming out today, she did cry, thinking that maybe she had done something wrong, and also knowing that we were going to go to ice cream to celebrate it coming out.

We went to ice cream anyway, because we couldn't stand to see our little girl cry over this.  She has really been trying to improve, to move forward.  This is so much for a little person to deal with.  She really enjoyed the ice cream, and it seemed to lift her spirits some, and we went on with the rest of the evening.  We stopped at New Seasons and there was some discussions of what she would like to eat for dinner, and some shopping, and then back to Ronald McDonald house where everything progressed relatively okay until Katherine started to make Amelia's dinner.

Now, I will openly admit that the probme here was one of my own creating, and I am sure just in my head, but two nights I have tried helping with dinner by cooking broccoli... and two nights I have drastically failed.

The FIRST broccoli mishap, I have mentioned before...  I was making a stir fry off a recipe that Katherine sent me, but with one modification.  We didn't have everything to make the sauce they suggested, so she told me to just use the Terriyaki sauce.  Well, the chicken was okay, but the broccoli was WAY to salty.  Amelia barely touched it.

The SECOND broccoli mishap, I couldn't even get it right in the microwave.  I was trying to just steam it in the microwave.  There was even a setting for Hard Vegetables (which was NOT very accurate).  First off, when I went to season the broccoli, since last time it had been too salty, I used the non-salt seasoning.  When I went to shake it onto the broccoli, I found out it did NOT have a shaker top and spilled a LOT of it on the broccoli.  I tried to mix it in, but it just didn't seem to work.  Second, the microwave did not do a very good job steaming the broccoli, as it was still a bit crunchy.

So, coming off both these kitchen disasters, when Katherine asked me to make the instant mashed potatoes, just follow the recipe on the box, but change a few things, I just couldn't do it.  The thought of my little girl crying because the tube wasn't coming out because she wasn't eating enough, and thinking that might possibly be because I messed up at least a couple of her meals, setting her back a bit, being more cautious about trying the food.  I just was so afraid after seeing that today of messing up again.  Yes, it was just instant mashed potatoes, how could I screw THAT up, at least that is what Katherine said to me any number of times.  All I could say is I messed up steaming broccoli in the microwave with an automatic setting... my kitchen confidence was less than low, and in this case it had to do with my daughter's health and when she might get the tube out.

I wish I could explain this to Katherine because right now, she is still upset with me over it.  She still feels that I was being unreasonable, and I don't know how to explain to her that I was scared.  Scared of messing up my daughter's recovery further.  Scared of making things worse again.

It has been a rough day.  A lot of disappointment, a lot of worry, a lot of insecurity.  I hope tomorrow might be a better day.  Right now, I feel pretty bad at most things around here.  I think it's time to take a shower, put today to bed, and hope for a better tomorrow...

Day 31 - Back to Bedlam

This morning, Katherine I got to wake up in our bed, but home didn't feel quite the same because Amelia wasn't there.  It was a sad thing, missing our baby girl.  But we got to come back to her this evening.

But, our weekend.  The saying "when it rains, it pours..."  Yeah, that is so true.  Friday night, we get home, and we through a load of laundry in.  It gets to the dryer, and the dryer starts to make a terrible squeeking sound... We have heard this sound before, when the dryer drum bearing is going out.  We replaced it once before...  The dryer is 10+ years old, and would cost us around $300+ for parts and labor to fix it, or we pay a little bit more, and we are getting a new one from Home Depot with a 3 year warranty.  Frustrating because now is NOT the time we really wanted to be making a purchase like that. 

Add on top of that this morning.  We were packing up, getting ready to leave, and Katherine mentioned dripping she had been hearing.  I thought I had heard it too.  Also, Amelia's room seemed REALLY humid...  Well, our water heater is in a closet off Amelia's room, and when we opened it, there was water in the pan, and water dripping from condensation on the ceiling.  I am HOPING this is just from the water heater venting and not being properly plumbed to dump the water outside, but if we have to get a new water heater as well...  That was a frustrating bit about today.

On the up side, we got to go back to our church at the Grove campus and see many of the people who have been praying for us and supporting us during our time down here.  It was great to see the love and concern of these people, coming up and asking how Amelia was, asking how we were, getting to tell our story and explain where things are headed.  It was a comforting feeling.

Then, we headed back.  We stopped off for lunch, but then got back to Ronald McDonald House in the early afternoon and let my mother head home, released of her grandma duties for the time being.

So, where ARE we right now, in terms of Amelia and recovery?  Right now, this is what we know.  Amelia has been improving her eating rapidly over the last week and a half since she started eating, and in the last 5 days that she has not been getting tube feedings.  Tomorrow, the clinic will most likely entirely remove the NG Tube, which I am very much looking forward to (though Amelia is concerned it will hurt, and it will a little, but she will be much happier afterwards).  From there, the clinic had talked about possibly discharging us as early as this week sometime.  Katherine and I have discussed it, and we wanted to at least wait until a week from tomorrow, so she can have 2 weeks off of tube feedings to get an idea of how well Amelia is actually eating.  I think they will be okay with that.  But, if that is the case, then a week from tomorrow, we might be getting ready to say goodbye to Kartini Clinic and Ronald McDonald House and return to Kelso and our houes and dogs, and our life.

Thank you for the prayers, the support, the love, and the family.  All of you who have sent cards, asked about Amelia, come by to help cheer us up, help us break up the monotony, and just help us get through, it has meant so much to us.  This has been a life-changing experience in so many ways.  Not everything starts out as a "good" thing, but through the grace of God, He turns them all to His purpose and guides us through them.  Thank you all.

Day 30 - Dressed to the Nines

Tonight was Amelia's School's Annual Auction.  We had tickets, and Katherine had a dress, so my mother graciously came up to watch Amelia for the weekend at Ronald McDonald House, and we got to come home last night and sleep in our OWN bed.  Everyone here loved that, from the cats to the dogs to us.  They loved it so much, this was the scene early this morning when I got up....

Everyone was so happy to cuddle and sleep.  Blitzen (the brown dog) was so happy he would follow us everywhere wagging his tail.  He is a snuggle bug, and gets very cold in the winter... So, he snuggles under the covers for warmth...

Anyway, today, we have been getting multiple updates from my mother on how Amelia has been doing.  It sounds like she had a decent sized breakfast, lunch, and dinner, with a number of snacks throughout the day.  She was quite active, and she and Nama played a lot.  And then, when it was time for bed, it took about two minutes for Amelia to drop off to sleep.

While they were doing all of that at Ronald McDonald House, meanwhile, in Kelso, Katherine had a hair appointment, and I hit up Ross Dress for Less to find a completely new outfit that would fit me and look good to try to complement her outfit (near impossible to do, but I had to try), and then we got ready for and attended the Annual Auction.

I think Katherine pulled it off amazingly well, looked absolutely stunning, and got MANY compliments on how great she looked.  We had dinner, talked with friends and families of classmates about how Amelia was doing, what the latest was, etc...  We also got to watch the 1st Grade Class Project that I helped with get auctioned off as two separate items, for a total of $800.  That made me feel a LOT better about all the hours I put into making those with the 1st Grade Class.  We finished off the evening with a short trip to the Red Lion Inn's Bar where Maestro Alan was spinning the jams.  We spent a little time there, and then we headed home.

Once we got home, Katherine had the idea to put on some slow dance music and dance here ourselves... That is when I learned she had never actually slow danced with anyone because she never went to school dances.  She was even willing to slow dance to one of my old favorites, Bryan Adams "Everything I Do, I Do It For You."  I remember riding 45 minutes on my bike, 15 miles from Monmouth to Salem, Oregon to buy the Robin Hood Prince of Thieves soundtrack (on cassette tape) so I could get that song...  I was 14 and used my own money from my first job.  She poked at it a little,but she still danced with me for the whole song. 

I love her, I love my sweet girl Amelia, and I wouldn't make it through every day without them.

Day 29 - Home For the Weekend

Well, at least Katherine and I are home for the weekend.  Amelia is spending the weekend with Nama at the Ronald McDonald House.  Tonight, they are celebrating Dr. Seuss' birthday, followed by Chinese New Year.  I am sure she is in the best of hands.  It was still tough to leave me little sweetheart, even just for a couple of nights.

But, we did.  We stopped off and looked for a couple of things for the auction (we have to look presentable and all of that), and then we went out to dinner.  When we got home, Blitzen and Zephyr (our dogs) were ecstatic to see us, and Kami and Grendel (our cats) were there to greet us too.  Blitzen got REALLY worried when we had to go out again.  We had to go and get me some gauze for a really bad chafing spot I had from a run earlier in the week.  I am still not walking right.  But, we came back, and now, excited by the prospect of snuggling with us, he is curled up on the bed, waiting for us to join him.

It is nice being back in OUR place.  Our house, with our pets, and our stuff.  Ronald McDonald House has been so amazing, and in ways, we will be sad when we finally leave.  But, in other ways, this is where we belong.  With our friends and church family, Amelia's schoolmates and friends, the people and places we know and go.  It feels really good to be back here visiting.  It will feel even better when we get to bring Amelia back here too.

So, I think we are going to head to bed (because we KNOW how to have fun on a Friday night...), curl up in bed with the dog, maybe watch a movie, and enjoy sleeping in our own bed for the first time in a month.  Yeah, I know.  Sounds REAL exciting, but right now, that is all I really want to do.  I would love to hug and kiss my girl goodnight too, but I think we will both have to survive for a couple of nights without that.

Thank you all for the prayers and good thoughts.  We hope to see some of you at the school auction tomorrow night, or at the Grove on Sunday.  I wish we had enough time to visit everyone and thank everyone in person, but this weekend is going to be mostly getting ready for the auction tomorrow (at least on Katherine's part... I just have to get slacks and a shirt, and I am good to go!).  She has a hair appointment tomorrow, has to do her makeup, and get her dress on...  Will definitely get some pics of that for tomorrow night's blog post.  I can say, as I have seen it already, she looks STUNNING!

Soon enough, we will be back home, and then we might look at having an open house here for anyone who wants to come by and say welcome home to Amelia to have a chance to do that.  Until then, thank you all for tuning in, following along, and everything you have done to help us through this.

Day 28 - The First of March

I didn't actually realize it was a new month until I sat down to type this tonight.  It is March already... Where did February go?  That was fast...

Amelia had a good day at clinic, eating everything there, doing quite well.  Tonight, for her dinner, she didn't eat much of the meat (a steak cut that was a little chewy, and some broccoli, which I now refuse to cook because I seem to have ruined it two nights running), but she did eat her bread and butter, a goodly sized handful of blueberries, and half a bag of Kettle Chips (earlier in the evening), as well as hot milk and honey earlier, and milk with dinner.  So, it could have been better, but it really wasn't THAT bad.

I know Katherine is concerned about what the metric is to determine if Amelia is ready to go home or not, but I am just trying to trust in the staff.  We are also finding what things to introduce her to a little more slowly.  Chicken seems to be okay, but steak is still a bit tougher...  Probably meats that can be cut by fork and maybe butter knife and don't require a sharpened knife to cut are a better idea for the time being, or ground meats.  I am still hopeful that by the end of next week, we will be trying to figure out how to pack up her ever-growing hoarde of stuffed animals (since we have been here, she has received 2 dragons, a wolf, a T-rex (it was supposed to be Katherine's) a HUGE teddy bear, an ever HUGER caterpillar, a sock-teddy bear, a small hedgehog, a peacock, and a dog with bunny ears, and those are just what she got since we were here, not what she brought with....).  Soon, she and her stuffed animals will be able to take over the world!  She is groeing an army of them!

Amelia is going on her third night of no tube feeding.  She has been showing good signs of hunger during the day, and eating relatively well.  If she continues, hopefully this will be her last weekend at Ronald McDonald House.  We will definitely be glad to get home, but we have made good friends here too...

Janelle and Olivia, our first greeters here, and helping us figure out Kartini life.  Jodi and Austin, friendly, easy to talk to, fun to hang out with.  Joanna and Tyler, our military background friends and like-minded thinkers.  Leanna and Bianca, Katherine's new friend and drinking buddy (the mom, not the daughter), and Leanna's husband Chris has been a good guy for me to talk to here as well.  Even Shelley and Lizzy, quiet as they are, in their own way have been great to get to know.  I am sure some we won't keep in touch with, others we will, but each of them has made our time here that much easier.

And the staff at Ronald McDonald House East, they are just phenomenal.  Christy is just amazing.  She is always so sweet with Amelia and always has a smile.  Carlo, handling everything from the dead rat in the garden, to painting ceramics with the rest of us.  Noemi and Clarissa and all the other smiling faces we see day in and day out.  They have all made this feel less like a hotel and more like a home.  They have all been so great.

So, yes, we are hoping our time is rapidly coming to an end, but yes, there are many people we will also miss here as well. 

And to all of you, who have been thinking of us, coming by to see us, keep us more sane, praying for us, sending cards, calling, e-mailing, sending packages to Amelia.  All of those things have helped break the monotony and helped us stay sane.  Thank you all for those.  It really has helped make the difference.  Hoping that there aren't many more of these to write...  Thanks all.