This was Grady laughing.

Isn't he cute?

Grady is doing very well with his feeds. The 3 hour schedule is out the window & we are feeding him whenever he is hungry - the only exception is that he has to wait at least 1 hour before the next feed. I figured out that in a 24 hour period he took 520 mls. and, if my math is correct, on the 3 hour schedule (where they gave 60 mls per feed - putting some thru the ng tube if required) he would have gotten 540 mls. The doctors were hoping he would take at least 65% of the 540, but he did much better than that. Hopefully it continues!

The new plan is to leave sometime Friday morning. We could have left earlier, but we have an appointment with the pulmonary doctor tomorrow at 1:00 (it is just a follow up) & it didn't make sense to leave today & come right back tomorrow. Also, Ken has off Friday, so it will work out really well to go home then.

I came back to RMH for supper & it was pasta again (we had it last night too) so I decided to go to WalMart & get some last minute items that I will need at home for Grady & treat myself to what might be my last Chipotle meal for a while.

Grady sleeping peacefully in his swing (still at rehab).

So we hit a little bump in the road today. When I went over to rehab this morning, Grady was very fussy. I thought it was just because he was hungry, so I got his bottle and tried to feed him, but he wouldn't take it. His heart rate kept going up - much higher than his normal rate and his respiratory rate was very high as well. He settled down for a little bit, but then started screaming and there was nothing I could do to calm him down. The doctor and the nurse came in & were very concerned. The doctor told me right then we won't be going home today (and I wouldn't want to go home not knowing he is ok). I guess he wouldn't take any of the feeds last night either so they were all put thru his ng tube. They called Dr. Boyle at the main campus & decided that we should take him in to be examined. We were getting ready to go and he started to act like he was hungry (almost time for his 12:00 feed) so I gave him his bottle and he took 55 out of 60 mls! His numbers all came back down & he seemed fine.

We still went to see Dr. Boyle, just to be safe, they did an echo, ekg and took chest x-rays and everything looked good. Grady was happy & cooing - he was like a different baby. They decided to send us back to rehab and continue his oral feeds. They are going to see how he does without using the ng tube at all - so if he only takes 30 mls, they will not put the other 30 thru the tube. They will just feed him when he is hungry and give him as much as he will take. They are not sure what caused his numbers to go up like they did. They think that he was just so out of his routine from the biopsy yesterday. The night before the biopsy from midnight to 4am he was only allowed to have clear liquids & then nothing after 4am. The procedure was done at 8:30am & he didn't get anything to eat until 3pm (and he wouldn't take his bottle at that time). I know I can get a little out of sorts when I'm not in a routine, I can't imagine what it's like for a baby who relies on routine.

We are still hoping to be home within the next couple of days - we have all of his prescriptions filled (they just need to be checked by rehab), a supply of his special formula should be arriving tomorrow, the nurse went over all the meds with me and if I have to, I'll learn how to put the ng tube in so we can go home. Strangely, I am not too discouraged with today's events. I know that Grady is fine and when you've been here for 4 1/2 months, what's a couple more days!

Answer to Comments:

Amy - I do plan on blogging after we get home. I'm not sure yet if I will be able to blog every night or not - I will have to see how things go.

Cheryl - I am so glad to hear from you - we loved having you as Grady's primary nurse at Rainbow - you did a wonderful job & gave us some comfort when there was very little hope - I am amazed that you remember us and took the time to find our blog. By the way, how did you find it? Can you please let Dr. Bailey know how Grady is doing? She made us promise to let her know how things turn out in the long run. Tell Amy & all the nurses in nursery 7 we said hi - we love all of you!

Grady in his cute little hospital gown.

Mommy & Grady

Wow - What a day! Grady's biopsy went well this morning and the results are in - ZERO rejection! Praise God! We got the results around 5:00 pm today. Also, Dr. Boyle said we can go home tomorrow! Can you believe it? My brain is just spinning right now. I was afraid rehab would not let us go - but Dr. Boyle made it clear to them that it's time we go home. The only thing that could possibly hold us up is if the medicines or Grady's formula don't get here for some reason. I was able to find a pharmacy that compounds & they feel that his medications should be ready by noon tomorrow. Rehab still has one that they need to fax over in the morning so hopefully it is one the pharmacy carries. Rehab is also working on getting the formula we need.

The plans for tomorrow are for me to go to rehab at 9:00 am like I always do & give Grady his feeds as well as work with rehab on anything else we might need when we get home. They are planning on pulling his ng tube out, so all meds and feeds will be oral. Once the prescriptions are ready, Ken, my mom and Jolie will bring them up here (so that rehab can check them) and help pack and clean the room at RMH & then we will head home - 4 1/2 months of living in Cleveland away from friends and family is finally coming to an end! We can bring our miracle baby home!

Please pray that the pharmacy would be able to fill all of the prescriptions tomorrow and also that once we are home Grady would do well with his feeds. He wouldn't eat at all today & I'm sure it was because of the biopsy, being at a different hospital and not having the special nipple he uses. I would hate to be home for a couple days only to have to come back because he won't eat. Also, pray for our family. We have been waiting for this day ever since Grady was born but it is going to be a huge adjustment for all of us - just pray that everything would go smoothly.

Our room at RMH.

Our bathroom - tub/shower is to the right of the sink.

It's 12:15 am and I am back at RMH. I had a really good time being at home this past weekend. I got to spend a lot of time with Colby as well as other family & I got some office work done. I just can't wait to be back home for good.

Grady's biopsy is tomorrow morning at 6:30 am. I am a little anxious - just hoping and praying that everything goes well. I don't know if I could handle a set back at this point - it just seems like we are so close!

Sorry I don't have better pictures to post. I took my camera home with me & was planning on taking pictures of Colby & family at home but the batteries died & I left the charger at RMH. I thought some of you who haven't been here would like to see where we have spent the past 4 months. We really lucked out - we got one of the 2 rooms here that are in a corner & are much bigger than the others.

Colby loves getting mail.

The kids from our church sent him a whole bunch of cards they made for him.

Grady during therapy.

I made it home last night. I was planning on leaving right after Grady's 3:00 feed, but the therapist came to work with him & I wanted to stay to watch. I got home at about 7:30 last night & was able to hang out at my sister's house for a while with their family & Ken & Colby. Ken left this morning to go be with Grady.

My plan for today was to get the prescriptions taken care of & do some office work. Instead, I learned a lot about pharmacies. I took Grady's prescriptions to the pharmacy in town because I thought it would be convenient to work with someone so close. What I found out is that they are not a compounding pharmacy & that 3 of his medications need to be compounded. What that means is, for example, he is supposed to get 16.5 mg of a certain medication but the smallest dose it comes in is 300 mg capsules. A compounding pharmacy would then break it down into the size dose he needs. Since he is so small & the dosage needs to be exact, she recommended a pharmacy that specializes in compounding. I called that pharmacy & unfortunately they were already closed. One nice thing that I heard on their recording, though, is that they have free delivery Monday thru Friday - it didn't say how far they go - but I thought that was a nice service they offer. I also heard on their recording that you need to allow 3-4 days for compounding so that might slow us up a little on getting discharged. Since I have to leave tomorrow to go to Cleveland, my sister will take care of getting the prescriptions to the pharmacy Monday morning. So, now, after all that I am going to try to get some office work done.

I just got done playing Phrase Frenzy with Rosy, Steve & Brandon. It's a game that you can play online against other people. Of course - I whooped up on em. I think Rosy did win one game, though. It's a good thing Steve can't type fast or he would beat us everytime since he's such a genius. Mom & Jolie were up tonight. They came to see Grady for a while & then took me out to eat at a place called Yours Truly. We had a good time except that it is so cold outside we were all complaining about our toes freezing just from walking in & out of the building!

Grady continues to do well with his feeds. We are also now giving him all of his medications orally instead of thru the ng tube - hopefully the tube will be coming out soon!

We had an appointment with Dr. Boyle today. It's always a good time when we go to his office. I know that sounds crazy - most people dread going to see the doctor - but Dr. Boyle and his team are fun! They are always picking on us and each other - sometimes that's what you need in these situations. Grady is scheduled for another biopsy Monday morning at 6:30 am. If everything looks good, Dr. Boyle said that there will be no reason on his end to keep us here anymore. Yes - you read that right - we might be coming home very soon. The only catch is, we still have to get cleared by rehab to go.

I talked to one of the therapists & she said that developmentally she feels that Grady is right where he needs to be (using his adjusted age). He is tracking toys & faces with his eyes, turning towards sound, cooing and doing all of the stuff a normal 2 1/2 month old baby would do, so hopefully there will be no reason for them to keep him. The main thing is still his feeds. Also, it is their policy not to discharge anyone until all of their prescriptions are filled and checked by a doctor on staff. I have 11 prescriptions from Dr. Boyle & I should be getting 2 more from rehab. When I come home this weekend I will try to get them filled by our pharmacy (I say try because I'm not sure if they keep all of these in stock or if they will have to order them in). Hopefully, I can get them all filled and bring them back with me Sunday night just in case they let us go next week - I don't want this to be the reason we can't leave!

Here is where all of you come in: PRAY! PRAY! PRAY!

PRAY that the biopsy (procedure itself) goes well & that there would be no perforations.

PRAY that the results would show NO rejection.

PRAY that Grady continues to do well with his oral feeds.

PRAY that there would be no problems getting the prescriptions filled.

PRAY that we could come home SOON - preferably BEFORE I lose my mind!


Answers to Comments:

To answer Leah's question - I don't know why they are having trouble pulling up his blog. The only thing that I could think of is a friend of mine works for a school & they have it blocked somehow so they can't get on blogs there. Are they trying to get on at work or is it a home computer? Maybe it has to do with a firewall or something if it's a home computer - they shouldn't have to download anything that I am aware of. If anyone out there knows what the problem might be - leave it on the comments page so Leah can pass it on to them. Thanks!

Sarah & Amy - I will be in touch about the meals - thanks so much for offering.

Not a whole lot to report - just getting so tired of being here! I did have a nice chat with my boss, though - she's pretty amazing! I decided today that I will be going home for the weekend. I am due for a much needed break & some time away from here with Colby. He has been such a trooper! Ken will come to Cleveland for the weekend.

One of the things that a lot of people don't understand is why it was such a hard decision whether or not to list Grady for a transplant. What most people don't know is that transplanted hearts don't last forever. The average length that a transplanted heart lasts is 10 years. (I have seen some cases where people have had their hearts for 20 years). The likelihood that Grady will have to have another transplant someday is very good (hopefully not for a long time, though). There is a lot of research being done, so hopefully they will come up with something before he gets to that point. I'm not trying to make everyone sad - I just want you to know the facts so that you can pray for our family. Pray that his heart lasts a LONG time - maybe we can break some records.

Since I am running low on things to post, if any of you have any questions that you would like answered, or any suggestions, please leave a message in the comments section & I will try to address them in future posts.

Grady was really fussy this morning (tummy ache I think).

He settled down this afternoon.

Today they cleared the nurses to feed - finally! They are not going to wake him up at night, though, to do it. If he wakes up, they will feed him but if he is sleeping they will put it thru the ng tube. Also, the charge nurse spoke to me today. She said they are moving Grady to reverse isolation. I wasn't sure what she meant by it (I had this image of moving to a different room & Grady in an isolette or something). She explained it & it's actually a good thing. Since there is so much sickness going around (in the area - not necessarily in the hospital) all of his caregivers (nurses, therapists, etc. - not us) need to gown and glove before handling him. Also, if they have been exposed to someone coughing, sneezing, etc. they need to wear a mask as well. I think this will ease my mind a bit. This morning a group of nursing students were following Grady's nurse & came in his room. I was so uncomfortable with it even though they didn't touch him or anything. I didn't say anything at the time, but I did mention it to the charge nurse & requested that no students go into his room. She said that is fine - she completely understands.

It was pasta at RMH again tonight & I just couldn't do it. I made a run to Chipotle - it's my favorite fast food restaurant (Jordan & Sarah got me started). I walked thru a couple stores as well - didn't buy anything - just looked. Ken doesn't understand that about me - I could look for hours & never find anything but still completely enjoy myself. I watched American Idol and I think I am going to take a nice hot bath & try to get to bed a little earlier tonight. Last night it was past 1:00 again & I had to drag myself out of bed to make the 9:00 feeding.

Oh - I almost forgot. Grady is up to 8 lbs. 9 oz. I could tell he was growing because all of his newborn sleepers are getting short! He's not chubby by any means but he is long. Hopefully, he'll be getting some rolls soon!

Grady in his crib.

128 syringes

Weekend is over, so I am back to the same old routine. I gave Grady his 9:00, 12:00 and 3:00 feeds. Each time he took at least 55 mls. which is great. I talked to the Dr. about getting the nurses cleared to feed & she said it is the therapist's call. They are going to talk about it tomorrow. I am really going to push for them to clear the nurses to feed so he can get more oral feeds. If they want the ng tube out before he goes home then this needs to happen. I just don't feel like we are making huge progress right now & I really want to go home (according to my calculations I have been here 133 days now)! I also mentioned to the nurses today that at the last appointment with Dr. Boyle, they said to start giving his meds by mouth (instead of pushing them thru the ng tube) so he gets used to the taste. They gave him a couple by mouth, but most of the time they are still pushing them thru the tube because it's more convenient - frustrating!!

The second picture is of all the syringes the nurses saved for me since Wednesday afternoon - a total of 128 so far. I know you are probably thinking that I've lost my mind, but they said these are really nice to have. You can put a cap on the end so when you go out & pack the diaper bag, you can draw all of his meds & put the syringes in the bag instead of taking 11 bottles of medicine along. They can be reused, but eventually the numbers wear off so they said to start saving them. They only use them once at the hospital so this evening, I peeled off all the labels on them & went down to the kitchen and washed all 128 of them! Sounds like fun, huh?

"Big Brother" Colby holding Grady all by himself for the first time.

Michelle & Grady

This is how Reece & Colby slept Friday night.

Ok - so I missed a day blogging - Sorry - it's been a busy weekend. Regan, Michelle & Reece left Saturday afternoon after visiting Grady & then Ken and I had a banquet for his work all the way in Coshocton. We drove down for the banquet (took a little over 2 hours), picked up his mom, dad, sister & Colby & came back to RMH the same night. We played games until after midnight. Ken got up this morning & went over for Grady's 9:00 feed only to find that one of the nurses had thrown away the nipple for Grady's bottle (he uses a special one) and so the nurse wouldn't let him feed him. Ken wanted to try one of the other nipples, but she said no & put the feed thru his ng tube. Ken was pretty frustrated when he came back. We all went over for the 12:00 feed (I had a stock of the special nipples in my backpack) and Grady did pretty good - I think we had to put 7 mls. thru the ng. We got brave today and took Grady from his room to a little sitting area - we wheeled his monitor along & there were no other people there, so I was pretty comfortable with it. His room is so tiny & with Ken's family here, it was nicer to be able to sit in a bigger room on comfortable chairs. We were also able to watch tv & play games which made the time go fast. We stayed until his 3:00 feed - he took 60 mls (5 more than he has to take) which was great. I tucked him back in & we came back to RMH.

Ken, Colby & Ken's family left a little after 7:00 tonight. Colby & I were a mess this time. He didn't want to go & I didn't want him to go - we were both crying & it probably took 10-15 minutes from the time we first started saying goodbye to when Ken got him out the door. This whole thing has really taken a toll on all of us. I feel so bad for Colby - this has been really hard on him & I feel like I'm missing out on so much of his life! Hopefully, tomorrow will be a better day emotionally!

Colby & Reece

Ken, Regan & Michelle playing poker.
Actually, I don't see any chips in front of Michelle anymore, do you?

Ken got up & went to rehab for Grady's 9:00 feed while I stayed at RMH with Colby. After he got back we went to Clinton's funeral - it was an interesting experience. Clinton was loved by a lot of people - it was interesting to see the different culture from what I am used to in Amish country. After the funeral, we ate lunch & I again stayed at RMH with Colby while Ken went to be with Grady. It was nice to have a break, plus Ken needed to get trained by the therapists - he is now cleared to feed on his own! I gave our room a good cleaning - it was definitely due for one.

Regan, Michelle & Reece came up around 7:30. We ordered pizza (I know I'm always complaining about pizza & pasta, but it was easy & Pizza Hut up here is pretty good). Funny story - our breadsticks never showed up, so the delivery guy said to call them & he would bring them back over - he said it's only a couple blocks. I did call them & they were going to bring them, but they got robbed in the meantime. Obviously, I said don't worry about. It will be interesting to see if it is on the news tonight. So, now, the adults are playing cards while the boys are playing & watching tv. We were playing Texas Hold 'em - not for money - just for bragging rights & I was the first one out so I decided to blog quickly. Regan's are going to spend the night here - should make for a fun evening!

I can't believe I got Grady smiling on camera - I think he likes the shirt he is wearing!

Not so sure about being bundled up.

Doesn't this beat the bonnet they put on him last week?


I took a couple pictures of Colby tonight.
This is the one he chose for the blog.

I was able to drag myself out of bed this morning to get to the 9:00 feed. I didn't have time for breakfast - but I made it in time for the feed - not a minute too soon either. Grady took all of his 9:00 & 12:00 feeds! He had an appointment with Dr. Boyle at 12:30, so I had to give him the 12:00 feed in the doctor's office. He did fine with it, though. Dr. Boyle is very happy with how he is doing. He said to up Grady's feeds - so now the minimum is 55 mls. but if he wants more, he can have more. Grady was very tired after making the trip to see Dr. Boyle. I had to wake him for his 3:00 feed & then he only took 50 mls. I think we are getting really close to coming home. They are talking about letting the nurses start oral feeds next week. Right now, they are not cleared to do oral feeds & so during the night they just put the feeds thru the ng tube. If he does well on around the clock feeds, they can take the ng tube out (one of the main reasons we are at rehab). Also, next week we are going to start giving Grady his meds orally. The nurses have been pushing them thru the ng tube & the transplant nurse wants him to get used to taking them orally before we leave. Keep your fingers crossed - we are seeing light at the end of the tunnel.

We had a really nice group bring dinner tonight. They were from bluemountain.com (online greeting card company based in Cleveland). I was so excited because they didn't bring pasta or tacos! We had subs, chili, salad, chips and dip, and dessert! It was delicious & they were really nice to talk to!

Ken and Colby came up this evening. It's always nice to see them! They usually wait until Friday, but Clinton's funeral is tomorrow & we are all planning on going to that. Colby doesn't understand what "died" means. He asked me if we can still talk to him or if we can go to heaven to see him. I tried to explain, but I'm not sure if he got it. We will see how tomorrow goes.

Ken is going to go to rehab for the 9:00 feed tomorrow morning. He still hasn't been cleared to feed (he's here weekends & the therapists aren't) so tomorrow he is going to be there as much as possible so he can get cleared. I don't like being the only one who can feed Grady - it makes me feel like I should be there 24/7.

Kendra & Grady

Unfortunately, I don't have a lot of pictures to post today because the batteries in my camera died. Luckily, I was able to get Kendra holding Grady before it quit on me. I was pleasantly surprised this morning when Kendra called to see if she could come up. She was planning on spending the day with Linda from church - but everything changed & since she had sitters for the day, she came up here.

I had my first "progress meeting" at rehab today. They are very pleased with Grady's progress. They say he takes his feeds better when I give them to him than when a therapist does (this morning he took 37 mls. for the therapist, but took all 52 mls both times I fed him). So, now, they want me to give him 3 feeds a day instead of 2 - which is great - but also means an extra 3 hours - at least - at rehab. I had been giving the noon & 3:00 feed & they gave me the option of adding either the 9:00 am or 6:00 pm. I decided to go with the 9:00 am even though it will be rough for a while. I know, most of you are thinking 9:00 isn't even early - but keep in mind - I have not been able to fall asleep until 1:00 or 2:00 am. (Michelle says I have my days & nights mixed up). Hopefully, if I am forced to get up earlier, I can get to sleep at a decent time.

Physical therapy

I woke up this morning with a pounding headache & no Advil or Tylenol. Luckily, Rosy was on her way up to spend the day with me & had some in her purse. The pills did the trick & we were off to see Grady. He continues to do well with his feeds. Today he had physical therapy. The therapist was very impressed at how well he could hold his head while on his tummy. He is such a tough little guy. As I was leaving, a nurse came in & told me that Grady didn't sleep much last night & one of the other nurses ended up holding him almost all night. This is something I am definitely going to discuss with the team there (they have meetings once a week & ours is tomorrow). This might sound mean, but I don't want them holding him all night long - there has to be another way to comfort him. What is going to happen when we get home? I can't stay up all night holding him! It makes me tired just thinking about it.

Rosy & I decided to leave rehab a little earlier than normal & go out for dinner & hit a couple stores before she had to go back home. We ate at Buffalo Wild Wings & went to Carters & Old Navy. We were going to go to WalMart & Target, but we never made it. Old Navy had amazing sales. Those of you who know me - know how cheap I am - well, Old Navy had an extra 50% off their Clearance sections. Rosy & I were in heaven:-) We spent a lot of time there. It seems there is never enough time to do everything when I have visitors. Rosy had to leave as soon as we got back to RMH. I went up to my room & was just hanging out when I realized that tonight was the first night for American Idol. I missed most of it - only saw the last half hour but luckily Ken has it recorded at home. I already told him to make sure not to delete it. I'm glad that there is finally something on tv to watch besides reruns.

Grady's sad face.

Ariel at the hospital.

Making silly faces.

It's Monday - so back to my daily routine. I was at rehab for Grady's 12:00 feed. For some reason his heart rate was a little high when it was time to eat, so they wanted me to wait & see if it comes down a little. It did, but by that time he was starving & just wanted to gulp his bottle down. I had to try to pace him but it was really hard - he was just too anxious - so I was only able to give him 25 mls. in 15 minutes & they put the rest thru his tube. He did much better at the 3:00 feeding (probably because we wasn't starving). He stayed calm for the most part & paced himself & once again took the entire 52 mls.

I came back to RMH for dinner & then went to Rainbow to see Kristina & Ariel. They are from Ecuador & have been at RMH since the end of August. Clinton was like family to them & they are devastated at his passing. Ariel is 2 years old & had a very risky heart/lung surgery last Monday. The surgery went well & he is in the hospital recovering but has been asking for Clinton. Please pray that God would comfort them & that Kristina could find the right words to explain to Ariel why Clinton isn't coming to see him.

Grady after his 12:00 feed.

Playing foosball with people from church before dinner.

Enjoying our delicious dinner!


Mom, Jonathan & Summer.
Even though he didn't say so, I could tell Jonathan really wanted his picture posted on the blog.

Small group that brought the meal.

Jolie is not pictured - she planned the meal & ended up being stuck at home sick.

I hope you feel better soon Jolie - Roy & the group had everything under control.

Today was a really good day that ended sadly. I will start with the good parts. My mom & Aunt Bertha came up & went over to see Grady with Ken and I, while my cousin Jeremy stayed at RMH with Colby. I was able to give Grady his 12:00 feed & he took the entire 52 mls! I couldn't believe it! He did awesome! We stayed at the hospital for lunch & played some cards so that I could give him his 3:00 feed. He took 47 mls - a little less but we are still very excited about the progress he is making. We have only been at rehab since Monday & he is doing so well. I'm sure the doctors and therapists will be shocked when they come in tomorrow & hear how well he did over the weekend.

A small group from our church brought the meal for the entire RMH this evening. It was awesome! They brought soup, lunch meat, homemade bread, salad, fresh fruit and cake. Several times now, when people from back home brought meals, I made the mistake of thinking that since there are so many leftovers, there will be some the next day. I think I have finally learned my lesson. After everyone was gone, I went down to the kitchen to "stash" some for later. I ran into one of the ladies who has been here as long as I have & she was getting food. I asked her if she liked it (because my church had brought it in) & she said yes it is good - but this is not for now, I already ate - it is for tomorrow. So that explains why all the good food disappears so quickly. Other people are not as slow catching on as I have been. If someone brings something they like, they immediately store some in their personal bins for later. Sad that it took me 4 months to figure it out! She said she especially liked the fresh fruit (we hardly ever get fresh fruit - usually frozen or canned). So - great job small group & thanks so much for the good food & honoring my request not to bring pasta!

We got a visit from Jonathan & Summer (friends from back home). It was really good to talk to them - we haven't seen them since this all started & we had a lot of catching up to do. We also reminisced about a trip Ken & Jonathan's ball team took to Florida one year - some really funny things happened on that trip!

Now for the sad news - we just found out that our dear friend, Clinton passed away. Clinton's title here at RMH was "janitor" but he was much more than that to the families staying here. He had a way of making all of us feel comfortable & he had a special gift with children. All of the kids here loved him - this place will not be the same without him! He will be dearly missed. His passing was sudden and unexpected so please pray for his family. We do know that Clinton was a Christian so it is a comfort to know that he is spending eternity in heaven!

Colby & Clinton

Ken and the boys.

Grady eyeing his daddy.

We all slept in a little this morning & then had a late breakfast at RMH. We got over to rehab a little before 11:30. I gave Grady his 12:00 feed & he took 32 mls. I also gave him his 3:00 feed & he took 37 mls. He is steadily increasing each time. I noticed that he was pacing himself much better today. I am so proud of him! You are probably wondering why Ken didn't feed him since he was here, but the doctors at rehab have to sign him off to feed him. Until he is trained by a therapist, he can't do any feeds - which really stinks because the therapists are not here weekends when Ken is - so for right now it is just me. Dr. Boyle stopped in today - he is still very happy with Grady's progress. Our nurse was impressed that he stopped in. She said it is only the second time since she has been there that the referring doctor stopped in to see a patient. I am probably going to start learning how to give Grady his medication next week - so pray that I "get it". He is on a lot of different meds so it will be a lot to learn.

I was exhausted by the time we got back to RMH so Colby & I took a nap while Ken watched football. We got up around 6:30 & took Colby to Toys R Us (RMH had given all the families $25 gift certificates for Christmas). He picked out a new Cars game for his Leapster. He is pretty excited about it. We ate dinner at a place called FatBurger. It was pretty good (our first time there) & then headed back to RMH. Colby played MaterNational on the laptop while Ken and I played a card game called Crazy 1000. We had some good family time today - tomorrow we are looking forward to getting some visitors.

Grady in his bouncy seat - I couldn't get him to smile for the camera.

Colby showing off his new Indians hat.

Colby clowning around in our room at RMH.

Grady smiled at me for the first time today. He has smiled in his sleep, but today I was talking to him and he looked right at me and smiled - twice! He was 17 weeks old yesterday - but his adjusted age would be 8 weeks. Also, today the therapists & doctors signed me off to feed him by myself. Now, anytime I am there during feeds, I can try to feed him myself. They had limited him to 3 oral feeds per day, but there is no limit anymore - I am just not supposed to push him too hard. They do not want him to develop an aversion to the bottle. He has been averaging 24 - 26 mls but at his 5:30 feed he took 32. Hopefully, this will continue until he takes the entire 52. (Currently he is still getting all his night time feeds thru the tube).

Two ladies from media relations at the Cleveland Clinic came over to meet with me today. They are going to call the Cleveland Indians & see if they would be willing to set something up with Grady Sizemore. They also said that when ESPN was at the hospital doing a story with a patient and Braylon Edwards, they seemed interested in doing a story on Grady. None of this is guaranteed at all - they were just giving me their thoughts. Just because the hospital wants to do it doesn't mean that ESPN or the Indians would be interested. We will just have to see what happens.

Ken and Colby made it up safely this evening. We ate supper at RMH & are hanging out in the room right now. Colby is hiding his cars & making Ken find them - his favorite new game.

Hanging out in his bouncy seat.

Hospital hat/bonnet - time for a trip to Old Navy.

Sporty outfit I picked out especially to go see Dr. Boyle.

I feel like I am finally starting to settle in to the move to rehab. Monday thru Wednesday were rough but today was good. I got over there around 10:30. Yes - I slept in. I am in a terribly bad habit of staying up until 1:00 in the morning & then I can't get up at a decent time. I've tried going to bed earlier but then I toss & turn until midnight or 1:00 so I figure I might as well stay up & watch tv or surf the internet.

Grady had an appointment with Dr. Boyle (cardiologist) today at 2:30. Since Dr. Boyle is at the main hospital we had to take him there - which was interesting. Since he is a patient at the rehab hospital, they have to transport him. They assign a nurse to take your child to all of his appointments. Parents can ride along (which I did) if they want to. They were getting him ready to go & my nurse asked if I had a coat & hat & I said no. I know it sounds silly, but I didn't realize that we would be going on trips like this. She said it's ok - the rehab hospital keeps hats & coats there for that reason. She went & got this blue suit to put over his clothes & a blue hat - which was really more like a bonnet (see picture). It had strings to tie it in the front & these little balls at the end of the strings - you can't see it on the picture. Grady looked hilarious! I know it's blue and all, but it looked really girly - and not just girly - Little House on the Prairie girly. It was so funny. I made sure to take it off as soon as we got into the hospital. There was no way I was going to let Dr. Boyle see him in it. Grady had one of those gowns on at rehab & I purposely changed him into a sporty outfit because I knew that Dr. Boyle would tease me if he was wearing anything girly. He had joked with Ken before his transplant about getting him a girl heart and changing his name to Grady Emily. So - we finally made it to the hospital in the rehab's van. The transport nurse is in charge of checking him in for his appointment & making future appointments. She also charts everything & takes care of any prescriptions or changes to Grady's orders. Grady had an echo and an EKG. A doctor came to examine him (don't remember his name) along with a medical student (don't remember his name either), our social worker, Mary (I remember her name - aren't you proud) & then the transplant nurse Colleen (we love her) came as well. Finally, Dr. Boyle arrived. He was very excited to see Grady. He held him with one arm & listened to his chest with his stethescope in the other hand. I was afraid Grady would push with his legs like he sometimes does and roll right out of his lap so I kept reaching over in case he would fall. Dr. Boyle thought it was pretty funny. He said he hasn't dropped any of his kids & he certainly won't drop mine. What a blessing it is to have Dr. Boyle as Grady's tranplant doc. He can relate very well with his patients & has a great sense of humor. He is always making us laugh! Dr. Boyle was very pleased with Grady's echo & EKG. He said Grady sounds a little congested - which we have noticed & mentioned to the nurses at rehab - and he wrote an order to start his albuterol treatments again. He doesn't think it's anything serious - it's more of a preventative treatment. Dr. Boyle gave me a hug & we were on our way back to rehab. It was so good to see everybody.

When we got back to rehab it was time for one of his scheduled oral feeds (he actually got a feed while at the main hospital but we put the entire feed thru his ng tube). The occupational therapist came in to help me with the feed. Since Grady doesn't latch on to the nipple very well, I have to support his cheeks and under his chin with my fingers and thumb as well as hold the bottle. It sounds complicated, but after watching the therapist do it I was able to figure it out. I am learning a lot about feeds. When Grady was at the main hospital, we pretty much stuck the bottle in his mouth & hoped he would drink it all. We never worried about pacing or watching his heart rate or anything like that - which is probably why he would throw a lot of his feeds back up. He hasn't thrown up once since he's been at rehab. Today he took 24 & 26 mls out of 52 during the 2 oral feeds I gave him. I know he sometimes took more at the main hospital but he would spit a lot of it back up. I really feel like we are making progress. Hopefully, tomorrow will be another good day. Ken and Colby will come tomorrow night - can't wait!