Here is a story that I stumbled onto. It does a great job of describing the emotions that go along with having a child with an illness/disability. I had to share it because those of you who know me, know that I don't cry easily & this story moves me to tears almost every time I read it.

WELCOME TO HOLLAND
"I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this . . .

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, 'Welcome to Holland.' 'Holland?' you say, “What do you mean Holland? I signed up for Italy I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.' But there’s been a change in flight plan. They’ve landed in Holland, and there you must stay.

The most important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that’s where I was supposed to go. That’s what I had planned.'

The pain of that will never, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

Uncle Wes with Colby & Grady

Today was a busy day - I do laundry Mondays & it's amazing how much more laundry we have just with Grady's things. I lost track of how many loads I did, but I did get it all done so I feel good about that!

My brother-in-law from Oklahoma is in for a food show, so tonight we all went to Der Dutchman for dinner. It was my sister Rosy & her family, my mom & dad, Wes & his buddy Earl and our family. Yes - we took Grady. My other brother-in-law, Steve, is the Assistant Manager at Der Dutchman so we were able to be seated in a closed section all by ourselves. It was really nice & Grady did good for the most part. I did have lots of people to help & we were able to walk around with him when he got fussy.

I ran into a couple of people that follow the blog & it was kind of a strange but good feeling - it's hard to explain. I love that people are following our story & praying for Grady but I am not the most outgoing person in the world so when I actually meet people, I don't know what to say - so if you run into me somewhere, please don't be offended if I don't talk much (this is something I am working on getting better at). Ken is the complete opposite - he loves meeting people & doesn't have any trouble striking up a conversation - he will probably talk your ear off!

On another note, I will be taking over more of my responsibilities at work this week. I used to do all of my work from my home office, but we will be moving the desk, computer, etc. back to the business I work for. There are definitely pros & cons to this. Pros: I will gain an extra room in my teeny tiny house, I won't be working at home & will be able to focus on my family while I am here, I will be able to get out of the house & I can still make my own hours. Cons: No more working in my pajamas (I will actually have to get dressed and comb my hair before I start working), I will need someone to watch the boys while I'm at work (most of the time Ken should be able to as I plan on working around his schedule), I will have to drive to work. Overall, I think the pros still outweigh the cons. My employer has been wonderful thru all of this & if having the office at the business location is better for her, I will make it work for me as well!

Grandma babysitting the boys.

Ever since the acid reflux study Grady has been throwing up - go figure. He hardly ever threw up before but lately it's been at least once a day - and when he throws up it's not just a little bit - it's projectile! It's so frustrating! We started him on cereal & it's not helping at all. I called the doctors (both the cardiologist & the pediatrician) because I was starting to get concerned that their was something wrong. Some of the signs of rejection can be flu like symptoms. Both doctors agreed that it is not heart related. They feel that he either picked up a little bug somewhere or that the medicine they gave him for the acid reflux test irritated his stomach. I am really hoping it stops soon!

Today Ken and I got to go to the Cleveland Cavs game. Roy & Jolie got tickets thru work & asked us if we would like to go. We left the boys with my mom. It was so much fun to get out! We ate lunch first & then went to the game. The Cavs won so that was just icing on the cake!

The boys did great for my mom (except that Grady threw up right before we got home). Regan & Michelle & 2 of their kids came over with freezer meals that people from church made. We had so much fun looking at what everyone made & deciding what we want to eat first. Thanks so much to everyone who participated in this - the meals look awesome & they are very much appreciated! We ordered pizza & made apple dumplings that we had in the freezer & then we were going to play games except that Grady was so fussy we only got one really short game in. Usually when we get together with Regan's we play games for hours, so it was a little disappointing that Grady wouldn't cooperate. He has an appointment with the pediatrician on Friday - hopefully she can give me some ideas for what to do when he is like this. Also, pray for us on March 10 - Grady has another biopsy. Pray that the procedure would go well & that there would be no rejection.

I LOVE this picture of my boys!

Colby getting ready to brush his teeth.

Grady's scar is very light - you can barely see it in pictures.

Grady had his appointment for the gastric study yesterday. We were just going to drive up in the morning, but they were calling for a snow storm so we decided to go to Cleveland Monday night. Ronald McDonald House was full, so we had to stay at a motel in downtown Cleveland. Jolie went with me again - it is so nice to have help on these trips! Grady's appointment was at 9:30 in the morning. In order to do the test, they put some nuclear medicine in his formula & had him drink it right before they started. They strapped him flat on his back onto this little board & a machine took pictures of his insides (digesting food) for 1 hour. He screamed for about 20 minutes & then finally gave up. After that, we stopped in to see cardiology just to have his blood drawn. They wanted to check his iron levels. Right now he is taking vitamins with iron & they are nasty. They were hoping if his levels are high enough that he will no longer need that medicine. That would be great - it is the one medicine that he fights with us to take in the morning! Colleen (transplant nurse) called me this morning & said that his levels are great. She is discussing with Dr. Boyle whether he needs to take the vitamins at all - she is pushing to eliminate it completely but I think Dr. Boyle wants him to stay on the vitamins without iron. She will call me back once they reach a decision.

We don't have the results of the gastric study yet - hopefully they will call soon. If everything looks good, the pediatrician would like to start Grady on rice cereal. Hopefully, this would make him feel more full so I don't have to feed him every 1 1/2 - 2 hours during the day.

Life here is just crazy. It is almost noon and I am still in my pajamas but I did give Grady his meds (not an option), 2 bottles, a bath and Colby and I had breakfast AND Colby is dressed as well - so it's just me. I wanted to blog because I haven't for a while & I was afraid I wouldn't have time later today. I am hoping to venture out to Walmart tonight when Ken comes home. I need a lot of stuff & I haven't been shopping since I'm home. Fortunately, I have a lot of family & friends that offer to pick things up for me when they are out but now I am ready to get out for something other than a Dr. appointment!

Well - I better get going if I plan on taking a shower today. Grady is sleeping so here is my chance! I will let you know the results of the gastric study as soon as I get them.

They just called with the results - good timing! The test showed no significant acid reflux. Apparently the medications are working because they said not to change them & we don't need to follow up unless there is a problem. Praise the Lord!

Grady has found his hands & likes to suck on them.

Having some tummy time.

Taking a break.

Colby at his play dough table.

I had a few minutes free today, so I thought I would blog. Colby is at Rosy's once again - the kids were going to play out in the snow. Rosy called me because she got the sign up for T-ball this summer. I can't believe that Colby is old enough to play! He's growing up so fast!

To answer Amy's question - yes Grady does have a scar - actually he has quite a few from the transplant, from some of the lines that were put in and from a surgery they had done to close the PDA valve. The incision from the transplant is very light & has healed quite nicely. It will probably fade even more. I didn't get a chance to today, but sometime I will take a picture without his shirt on so you can see.

Grady has decided that he needs to eat every 1 1/2 to 2 hours during the day. It's hard to get anything else done! Luckily, at night, he will go 4 hours until the next feed. Here is a typical day for us (times are approximate & vary depending on when Grady is hungry):

8:30 am Feed Grady & give 6 to 7 meds depending on what day of the week it is

10:30 am Feed Grady

Noon Feed Grady

1:30 pm Feed Grady

2:00 pm Give 1 med

3:15 pm Feed Grady

4:00 pm Give 1 med

6:00 pm Feed Grady

8:30 pm Feed Grady & give 6 meds

Midnight Feed Grady & give 1 med

4:00 am Feed Grady

8:30 am It all starts again!

That leaves 15 syringes & 9 bottles to wash each day along with all the other things that go along with maintaining a house. I'm not complaining - it will get easier the older he gets - I just thought it would be interesting for you all to see.

We are planning on going to my sister's house tonight for dinner. I am so excited to get out of the house. Other than doctor appointments, I can count on one hand how many times I've been out of the house since we are home!

I almost forgot - Grady rolled over yesterday! It wasn't like he was trying or anything, he just has a really bad temper & was laying on the floor crying. He arches his back when he's mad & he pushed with his foot at the exact same time & just like that he was on his belly. It was so funny - I think it surprised him.

Hanging out at RMH - didn't realize how girly this sleeper looked until I saw this picture.

Waiting for Dr. Boyle.

Ken & Colby watching tv at home.

So it's been a few days since my last post - Sorry. Life is much busier at home than it was at the Ronald McDonald House. We had a couple appointments in Cleveland today so Jolie, Grady & I actually headed up to RMH last night. Grady had an appointment with audiology (hearing) at 10:30 which would not have been bad except that we had to sleep deprive him & not give him his last feed so that he would be hungry & tired & therefore would sleep thru the test (they needed him to hold still). Needless to say, by the time we got to the appointment, we had a very grouchy baby. I was soooo glad Jolie was along to help! He did go to sleep after he ate & they were able to do the test. His hearing is fine, as of right now, but they did say that sometimes the medications can affect hearing & if we notice any changes to let them know.

His next appointment was at 11:45 for an echo and an EKG. He was very fussy & squirmy & they were only able to take a few pictures during the echo & were not able to do the EKG. Our next appointment was with Dr. Boyle (he always reviews the echo/EKG and then meets with us). While we were waiting for him we decided that maybe Grady was hungry, so we fed him & he was fine after that - wish I would have known that was his problem earlier - they would have had better luck with the echo & EKG. He had just eaten about an 1 1/2 hours earlier but with not feeding him when he was hungry earlier, his schedule was way out of whack. Anyway, Dr. Boyle didn't seem too concerned that they weren't able to do the tests. He still feels that he is doing well except that he is not gaining weight very fast. He weighed 9 lbs. 13 oz. on their scale - only 1 ounce more than he weighed at the pediatrician's last Thursday. (Each scale varies a little but he really is not gaining fast). I think we are all very anxious to see what the GI doctors say on Tuesday - hopefully they can figure out how to put some meat on the little guy!

After all the appointments, we ate lunch & then caught the shuttle to go back to RMH. Let me just add that coming to the hospital on the shuttle was not a problem, but going back was awful! We had the stroller along because the clinic is huge & the appointments were in 2 totally separate buildings attached by a walkway. Well, when we went to get on the shuttle, Jolie went ahead with Grady in his carseat & I folded the stroller (it's a pretty big stroller) and got on the shuttle. Well - the shuttle was pretty full & my huge stroller would not fit down the aisle. I also had a big backpack hanging off my shoulder so it was quite akward. I stood there contemplating what to do & things started falling out of my stroller. The people in the front seats just sat there staring at me instead of offering to help or move. I finally sat by an old man in the front with my stroller blocking the entire aisle. When we got to the first stop (not my stop) I got up to figure out where I can move to be out of the way & another old man in the second row was like "you have to move - I have to get off here." By this time I was really annoyed - what did he think I was trying to do?! I explained to him that if he would just give me a minute I would be out of his way but before I could even get completely out of the way - he just crowded by me. Once I was finally out of the way, I leaned over & all kinds of things fell out of my backpack - go figure! The 2 ladies in the front seat actually picked some of the stuff up & I finally asked if there was anyway they could move back so that I could fit in there with my stroller. They did & the rest of the trip went much better. And don't worry - I didn't make a couple little old ladies move - these 2 were probably in their 40s which is why I was so annoyed that they didn't offer it in the first place. I mean, I was obviously struggling!!

When we finally made it back to RMH, we went up to the room, fed Grady, cleaned & got ready to leave. I just have to tell you how weird it was to be back & not be in my old room. I lived there for 4 1/2 months & it was just the weirdest feeling. A couple times I headed toward my old room instead of the one we had for the night. Another cool thing was that it was room #209 - yes Tiffany - my first time back to RMH and they give me your room! What a coincidence!

We checked out and headed toward home. I got home around 4:30 - 5:00 & was exhausted. It was so nice that the church had someone bring a meal - cooking was the last thing I felt like doing when I got home! Thank you so much!!

I also wanted to say thank you to the 3rd & 4th graders at Zion Mennonite Church in Pryor, OK. Colby loved the cards that he got in the mail (and I'm sure Grady will like them too when he gets bigger).

One more thing, Rosy brought Colby home tonight (he had spent the night there) and brought with her a Power Point presentation that she and Brandon had put together with pictures of Grady. It was so awesome! Hopefully, some of you will be able to see it some day. Thank you Rosy & Brandon (and Mariah - I am told she picked some of the pictures)!

Colby asked today if he could be like his cousin Brandon & not wear a shirt.

He walked around the house like this all day.

Playing games with our family.

Everything is still going well at the Schlabach house. Grady is doing really good. We have an appointment in Cleveland on Wednesday of this week and Tuesday of the following week. I have no idea what to expect after that. I am really hoping we can start spreading them out a little bit.

We had a lot of fun this weekend. Roman, Sue & Rachel came over Friday night and played games with us. We called them because we were bored - I hate being home with nothing to do on weekends. Saturday night Steve & Rosy & the kids and Roman, Sue & Rachel came. We played games until 1:00 in the morning - we had a blast! We are expecting company this evening as well (our friends Jimmy & Becky and Jerry & Judi). I can't wait until the weather gets nice & all this sickness that is going around comes to an end so that we can go out! We are really looking forward to going back to church! We have an AWESOME church family & we miss everyone there!