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!

Colby & Mariah playing.

Grady - 5 months old, 9 lbs. 12 oz.

(this is still a newborn outfit - it is just now starting to be a little too small).

Happy Valentine's Day!

Grady had an appointment with his pediatrician at 8:45 this morning. It's quite an adventure to get myself, Colby & Grady (with all his meds & feeding him) ready to get to an appointment on time but we did it today. We were even a few minutes early! The doctor is happy with Grady's development. The only thing that she was a little concerned about is that he didn't gain quite as much weight as she had hoped. He is up to 9 lbs. 12 oz. She suggested starting rice cereal, but decided to wait until after he has his gastric study in Cleveland on the 26th. The last couple days he has been eating a lot, so hopefully by the next appointment she will be happier with his weight.

Tonight we had our first night out on the town. My mom came down to watch the boys & Ken and I went out to dinner with Steve & Rosy. It was really nice. We were only gone about 2 hours, but it was a nice break. Grady was good tonight - last night he was so fussy we didn't know what to do anymore. I was really getting nervous that something was wrong but then he finally settled down and went to sleep.

Grady hates being in the car seat.

Cuddling with Aunt Rosy.

Colby & Mariah getting ready to play in the snow.


What a handsome little guy!

Things continue to go well - we are getting used to giving Grady all of his meds. Most of them he takes with no problem, but there is one he gets in the morning and one in the evening that he absolutely hates. We usually have to fight with him to get him to take them & then he lets us know how mad he is for a while afterwards. He definitely has a temper (he must get that from Ken)! We have also figured out that when he is really mad we have to stand up to hold him & bend our knees really deep (like a squat). This almost instantly calms him down - the only problem is we can't stop. My legs are actually starting to burn from doing this. We can calm him down & think he is sleeping but as soon as we sit down the screaming starts again. I know - he's got us wrapped around his tiny fingers.

We went to my sister, Rosy's, house for a while this evening. It was really nice to get out. Colby had been there all day (he went sledding with Rosy's kids). We are very careful not to take Grady anywhere where there are sick people.

We are ready to have some visitors (up to this point it has all been immediate family) but there are some rules that must be followed. Absolutely no one with as much as a sniffle can come (No exceptions - we will ask you to leave if you even appear to be sick). Also, if you've been exposed to something, please wait a couple days to make sure that you don't come down with it as well. Finally, PLEASE call before you come. I don't like surprises! And, don't be offended if it doesn't work for us or if Grady had a fussy day & we ask you not to come. At this point, we are ready to see people but I don't know if we will be overwhelmed or not - so don't take it personally if we ask you to come another time. I know this sounds strict but we are taking every precaution to protect Grady - please don't be offended.

Sorry - no pictures today - I just didn't take the time. It is definitely harder to find time to post since we are at home. We had a very nice weekend. My family was here both Saturday night and today. It is so nice to be home!

Grady has been very fussy the last several days - I think it is the acid reflux. It is so frustrating because he was doing so well last week that I cancelled his appointment with the GI docs to run some tests. They were originally scheduled for this coming Friday. Now I wish I would have waited a little longer before I cancelled. I think I will try to call in tomorrow & reschedule. I can tell it hurts after he eats & he's thrown up a couple times as well which is unusual for him. I already have a couple appointments next Wednesday & it just isn't fun driving all the way to Cleveland all the time - but if they can help his reflux I guess it will be worth it.

Grady getting some tummy time.

Finally sleeping after a very fussy evening.

It's midnight & I am sitting here waiting for Grady to wake up so that I can give him some medicine & one last bottle before bed. He has really been eating well the last few days - today I barely got anything else done besides feeding him & giving him his meds. He was really fussy tonight - I'm guessing because he had a stomach ache from eating so much. I finally gave him some Mylicon (for gas) and he settled down.

Colby has been very helpful the last couple of days. He is settling in to his role as big brother. He gladly thows dirty diapers in the trash, gets clean diapers for us or runs upstairs to get a burp rag - he's such a sweet little boy - I miss all the one on one time I used to be able to spend with him.

I better go - Grady is stirring so I'm sure he will be crying for his bottle in a couple minutes.

This was in the doctor's office.

Today was a long day. I had to get up at 6:00 this morning in order to have myself and Grady ready in time to make it to our doctor's appointment in Cleveland at 10:00. Colby had spent the night at Rosy's house, so I picked him & Rosy up there. Rosy drove so that I could take care of Grady if he needed anything.

We had an appointment with the gastroenterologist first & everything looked good from their end. Grady's liver medication was stopped about a week ago because his numbers were exactly where they needed to be. They will do some labs about a month from now to make sure the numbers stay where they should be without the medication & if everything looks good we won't have to see them again.

Our next appointment was at 12:00 with Dr. Boyle. He just did a quick exam & seemed happy with Grady's progress. Grady is up to 9 lbs. 5 oz. (so he is gaining some weight since he's been at home).

We didn't make it back until about 3:00 & I was exhausted. Grady & Colby both took naps while I tidied up the house. Luckily, we had another meal come in from church tonight so I didn't have to cook. Let me just say that the meals so far have been awesome! We really appreciate them - so thanks to all of you who have brought meals or are bringing some in the future!

Colby playing on the laptop again.

Colby drew this picture of a semi truck.

It's getting harder and harder to know what to write. It seems that each day is so much like the last one. Grady is still doing very well. He is eating great & I am getting used to giving him all of his medicines. Colby is still having fun being at home. We will have a busy day tomorrow - Grady has an appointment in Cleveland at 10:00 with the GI doctor and at noon with Dr. Boyle. My sister, Rosy, is going to go with me.

I have not shared this with a lot of people yet, but we have been praying about it for quite a while now. Our health insurance is thru my employer (I do office work from my home). The company I work for is very small - only about 10 to 15 people on the insurance plan. Everything that has happened with Grady & the potential for future claims is going to make my boss' premiums go up each year to the point where she will not be able to offer insurance any longer. With Grady's medical condition, we don't feel comfortable at all being without insurance and I don't want to wait until it is no longer offered to plan for the future. Ken is self-employed (construction) and we would not be able to afford the premiums for our family thru his business. We really need all of your prayers - we are praying that a door will be opened either for Ken or myself with a large company that offers good health benefits. Right now, this is the biggest stress for me - I need the security of knowing that we can provide for the future. Pray that God will open a door and we will know without a doubt that it is God's will for us.

Colby - Chipmunks

Colby - Chipmunks
Colby loved the Alvin and the Chipmunks movie & is always singing this song. I thought I'd share it with all of you - just click on the underlined link above.

Grady without the ng tube. He scratched his nose pretty good & his cheeks are red from being taped for so long.

Grady loves his new swing.

Colby was doing "cool, cool tricks" with his balls tonight.

Grady is still doing very well at home. He continued eating well today - so we pulled the ng tube out. He doesn't seem quite as fussy after he eats so maybe the tube was irritating his acid reflux. He has an appointment with the Gastroenterologist Wednesday.

Grady still has his fussy times - usually right after he eats, when we try to give him his meds and in the evening. Overall, we can see a huge improvement, though, from the first day at home. Tomorrow Ken goes back to work so I will be on my own - hopefully he has a good day. It can be pretty stressful trying to get him to take his medication when he is screaming!

Colby is enjoying being at home. He has been playing a lot with his toys and on the computer. Grandma & Grandpa Schlabach were here (they brought us brunch) and Colby was able to show them his new room and play Crazy Eight with them. He is a very helpful big brother!

Grady's first bath at home.

Mommy & Grady

Daddy trying out the new carrier - walking and bouncing are the only things that calm Grady when he is really mad.

Wow - what a difference from yesterday. Grady is doing much better. He is eating great but is still a little fussy right after he eats - I think he has a little bit of a tummy ache. Also, he is doing well at taking his meds - yesterday he screamed the whole time. Hopefully things will continue to improve. I was at my wits end yesterday but things looked a whole lot different today. If he continues to eat well, we would really like to pull the ng tube out tomorrow. We will probably call the nurse just to make sure it is ok.

My mom was here most of the day helping again. We had unpacked all the RMH stuff yesterday, but we had to put away all of the stuff Colby had up at Rosy's today. The child has way too many clothes!

Our church has arranged to bring meals in every other day which is a HUGE help. Kendra brought us our first meal this evening & it was very good! Roman, Sue & Jen also came over for a while tonight. We were able to play a few games during Grady's naps.

Dr. Boyle (transplant doctor) and Colleen (transplant nurse) with Grady.

Getting ready to leave rehab.

Me, Grady & Asia (Grady's primary nurse at rehab).

Getting ready for the trip home - first time in his car seat.

Saying goodbye to Kristina & Ariel...

...and Doris & Dorian.

Grady at home in his new swing - a gift from Grandma & Grandpa Hershberger.

A lot has happened since my last post. We decided to leave Thursday evening instead of Friday. We knew there was supposed to be an ice storm coming & we didn't want to drive home in it Friday. We also didn't want to get stuck in Cleveland any longer. Ken, my mom & his mom came up Thursday evening to help us pack and clean the room. It's amazing how much stuff had accumulated in 4 1/2 months. Grady did great on the drive home - we had to stop about a half hour before we got home to feed him. He did well thru the night - got up twice to eat & then went back to sleep, but today has been a different story. He has been very fussy & while he eats a little, it's not like he had been doing. I don't know if it's just the change or if there is something wrong. It's quite stressful! My mom spent the night last night & Ken had off work today, so luckily I had some help. Even with them here, I was in tears several times. I knew it would be hard when we get home because of the lack of sleep, but I never dreamed he would be this fussy & not want to eat! Please pray that he adjusts & things start going better. They left the ng tube in just in case we need it here, but I was really hoping we wouldn't have to use it.

Colby was so excited for us to come home - he stayed up late to wait for us & he got to sleep in his own bed. I'm sure that after today he probably doesn't think that little brothers are so great anymore.