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.