Modern Day Miracle

2008-11-05T09:13:00.002-05:00

For those of you who still follow this blog, I'm sorry I left you hanging for so long. Grady's biopsy went great - zero rejection. He is doing very, very well! The doctors were extremely pleased with his progress - just some minor adjustments to his dosages for his medications.

2008-10-20T10:22:00.003-04:00

Me & the boys.

Grady is doing great - he is into everything! He has a biopsy scheduled for this Friday, October 24 in Cleveland. Please pray for zero rejection.

2008-09-10T15:10:00.005-04:00

I tried a winter coat on Grady - he wasn't too happy with me.

Isn't he adorable?

Colby on his first day of school.

I can't believe it's been more than a month since my last post. Things have been going really well for us. Grady started crawling on all fours. He can also pull himself up & walk while holding on to furniture. He was featured on "Pediatric Perspectives" - a medical magazine that goes out to area doctors. He was also on the front page of our local newspaper. He is just doing wonderfully. He will probably have another biopsy either in September or October. I am still waiting to hear back from the transplant team

Colby started kindergarten this year. He goes full days on Monday, Wednesday and every other Friday. He loves it. He made a friend & it sounds like they are inseparable. The first day, on the way home from school, the bus went right past our house & didn't stop. I had to call the school so they could radio the driver to bring him back. I asked him why he didn't say anything to the driver & he said because he wasn't ready to get off - he was having too much fun. I found out later that his friend was supposed to get off at the local daycare - the bus actually stopped there & dropped several children off - but he didn't get off either because he & Colby were having too much fun. Crazy kids!

Something that I haven't mentioned here yet is that I am hoping to go to nursing school. I have been working towards the entrance requirements this past summer. I never had a desire to be a nurse until we went thru everything with Grady. God just really laid it on my heart - so much so that there were some nights that I couldn't sleep. I am hoping to be accepted for the spring semester which starts in January. The first thing I had to do was take a Chemistry class since I never took it in high school. It was already toward the end of the summer when I decided to go for it. In order to be accepted for the spring semester, all entrance requirements would have to be completed and submitted by December 1. All of the Chemistry classes that I could find for the fall semester didn't end until mid December. I started to think I would have to wait until next fall to go to nursing school, when I came across a summer class (this was on a Thursday night) that started the following Monday. Fortunately, they were able to register me as a guest student, manually push my application thru and I was able to take the 5 week class. I also had to pass the ASSET exam (which is a placement test for students who never took their ACT or SATs). The school that I want to go to uses it as an entrance exam rather than a placement test. They test you on Reading, Writing, Math and Intermediated Algebra. I wasn't too worried about the first 3, but I hadn't even looked at Algebra for 14 years. Luckily, a friend of mine had an Algebra book that she let me borrow. I studied pretty hard for about 2 weeks & took the test. I just got my results back yesterday & found out that I passed. Now I just need to wait & see if I will be accepted. I really feel that God gave me this desire & is opening doors & allowing everything to fall into place. My biggest concern is finding good childcare while I am attending classes. God has brought me this far, so I am sure he will provide. I will just take it one step at a time.

Day 21

2008-08-10T21:47:00.003-04:00

Yay! The threat is over. We remain chicken pox free. Thank goodness - no hospital stays right before Colby goes to school!! Praise the Lord!

Day 16-19

2008-08-08T12:16:00.004-04:00

Colby helping me bake in his underwear.

Grady playing with his toys. He is really getting around these days.

OK - so I thought I would be able to blog every night with a short update - What was I thinking? We are so busy right now with Colby getting ready to go to school, Tball, Ken playing ball, amongst a lot of other things. As of this afternoon, there is still no sign of chicken pox. Grady has had a runny nose for about a week now but I am hoping it is just because he is teething. I have convinced myself that the boys are not going to come down with the chicken pox since we are so close to the end of the incubation period. I would be really upset if they get them now. We should no longer be at risk as of Sunday.

Day 14 & 15

2008-08-05T08:15:00.001-04:00

Still no sign of chicken pox. Really praying that we don't get them.

Day 12 & 13

2008-08-02T17:22:00.002-04:00

Everything is still looking good.

Day 11

2008-07-31T22:42:00.001-04:00

Still no sign of the chicken pox.

Day 10

2008-07-30T21:25:00.002-04:00

The boys are doing great. No chicken pox or fevers yet. I, however, am extremely paranoid - constantly checking for bumps and fevers!

I spoke with the transplant nurse this morning. I was correct in assuming that Grady would have to go to Cleveland instead of a local hospital. She also said that since the child the boys were exposed to had already broken out he was less contagious than if it was a day or two before he broke out. That's good news but definitely not a guarantee that we won't end up with them.

Chicken Pox 101

2008-07-29T22:06:00.002-04:00

We just found out this past weekend that Colby & Grady were exposed to Chicken Pox on July 20th. For most people it's not a big deal, but for Grady it would probably mean another hospital stay. I have been on the phone with his pediatrician as well as doing some research on my own. I found out that the incubation period is normally 14 to 16 days but can be as long as 21 days. We just completed day nine so we are not out of the woods by a long shot. Colby received the vaccine, but Grady is not allowed to have it because of his suppressed immune system. (Even though Colby received the vaccine, he could still get it - just not as severe).

The transplant nurse told me that if I see even one lesion on Grady (I am supposed to check him several times a day), I need to go to the ER and have him urgently admitted where they will start iv medications immediately. She told me this on my answering machine, so I didn't get to ask, but I am assuming we will have to go to Cleveland where they are more experienced with this type of situation. I will be talking to them more tomorrow & hopefully clarifying the "if" details.

Also, I found out that had we known within 72 hours of him being exposed, they could have given him medicine to prevent it. Even if Grady gets chicken pox now, he will not be immune to it in the future because of the medications he is on so if you or your children ever have any type of rash or anything that looks questionable, please stay away from Grady. Chicken pox is spread thru the air, so even if you don't touch Grady, he could still get it. I know that a lot of times you don't know that you have chicken pox until it's too late but if we find out within 72 hours, we can prevent it.

On a more positive note, I did a little more research this evening and found out that a child who has been vaccinated and contracts the chicken pox virus is only 1/2 has contagious as a child who has not been vaccinated. (The child that exposed us was vaccinated - definitely a plus!) I am hoping that with him being vaccinated and Colby being vaccinated that somehow we can dodge this whole thing. Please pray! I will try to update you daily as to whether we have come down with it or not.

Just so you know, the people who exposed us had no idea at the time and they feel horrible.

2008-07-25T11:52:00.007-04:00

Grady on the living room floor (this is one the photographer from Cleveland took).

Colby helped decorate his volcano cake.

Colby and his friends at his party.

Colby & Grady taking a bath together. Grady loved it.

I can't believe it's been over a month since I last blogged! Just remember that no news is good news! Grady has been doing really well - not even an ear infection lately! He continues with his physical therapy once a week & he is making progress each week. He can sit by himself & he is just starting to do a little bit of an army crawl. He has 2 teeth and he has started sleeping thru the night (for the most part - he still wakes up every now & then). So all in all things are going great!

Grady is going to be featured in a magazine called "Pediatric Perspectives". It is a medical magazine that goes out to doctors in the Cleveland area. We had a photographer come down to our house to do a little photo shoot. It was really neat.

Colby turned 5 in July. He had his first "friends" birthday party. It was a lot of fun. We made a volcano cake. He is excited to start school in the fall.

2008-06-12T13:32:00.005-04:00

Grady enjoying the pool.

Colby at the beach.

We had a awesome time on vacation, but now it's back to reality! We came home Sunday evening around 6:00. Tuesday Grady started tugging on his ear again & not eating well, so I took him to his pediatrician on Wednesday to have her check for an ear infection. There was so much wax in his ear that she couldn't see, so she sent me to an ENT (Ear, Nose, Throat). They used some type of device to clean the wax out - I had to hold Grady against me while 2 other nurses helped hold him down. Needless to say, he was very mad by the time we were done - he is definitely a fighter! The ENT said that his ear doesn't look bright red but that there is definitely fluid there, so they started him on antibiotics again as a short term solution but said that most likely we will have to put tubes in his ears. This is the 3rd ear infection he has had since we got home on January 31. Also, they said that even though it is a very simple procedure it will have to be done in Cleveland because of his history.

Today I took Grady for his first therapy session. He really seemed to like it. It is nice to have someone work with him & tell me what we can be doing with him at home. He does have a little catching up to do, but not much considering all he's been thru.

Colby has been at Bible School this week. He is really enjoying it. I have had to rely on some of my friends to get him there & pick him up when I've been at appointments with Grady. We are so blessed to have such good friends, family & community to support us throughout all of this! Thanks so much!

I almost forgot - Grady is up to 14 lbs. 2 oz. He is gaining, but very slow.

2008-05-30T15:22:00.006-04:00

Grady is upset about being in his swing.

This is our dog Molly right after her haircut.

Colby gave himself a "fat belly" in the sandbox.

Colby & Reece playing in the sandbox.

Reece said "Colby put the sand in his shirt all by himself - I just watched."

I think he was afraid of getting in trouble.

This has been a crazy week - we are getting ready to go to Myrtle Beach! Both of my sisters & their families as well as Jolie & Roy had planned this trip last summer when I was pregnant before we even knew about Grady's heart defect. We kept the reservations - with everything we've been thru this year, we could really use a vacation!

Tuesday we had Grady evaluated for physical therapy. His adjusted age is 6 1/2 months & the therapists feel that he is doing everything a 5 month old baby would do & some of the things a 6 month old would do (which is very good considering he spent over 4 months in the hospital). They did recommend some Physical & Occupational Therapy and are just going to keep an eye on his Speech & Language Development. He will probably be going in for therapy either once a week or every other week. His first session will be the week we get back from vacation.

Grady is still not sleeping thru the night consistently. Every now & then he will sleep from midnight until 5 or 6 am but it is unusual. He usually gets up around 3 for a bottle, but then goes right back to sleep. He is also very demanding right now. He can be playing in his exersaucer but as soon as we leave the room he starts crying. He is definitely a little spoiled!

I better get back to packing. You can not even begin to imagine how much stuff we have to take along (pack n play, exersaucer, stroller, golf clubs, food, meds, medical records, etc.). Hopefully everything will fit in the van!

2008-05-20T14:27:00.002-04:00

Grady in recovery after the biopsy.

Hello everyone - I don't have a whole lot of time to blog, but I just wanted to let you know that the results of the biopsy yesterday were ZERO rejection! It was a very long day, but Grady did great. I was exhausted when we got home! The dietician changed the recipie for his formula a little to add a few more calories. She also gave some suggestions with his feedings to hopefully get him to sleep thru the night. I will let you know how it goes.

2008-05-18T20:03:00.004-04:00

Playing in our room at RMH.

Playing with Jolie.

We made it up to Ronald McDonald House this evening at about 6:15. Grady has a biopsy tomorrow morning at 6:30. We should get the results around 5:00 pm. I am really hoping Grady does well thru the night. He is not supposed to have any formula after midnight. He can have Pedialyte up to two hours before the procedure but he doesn't really like it. Pray that the procedure goes well and that there is no rejection.

I was surprised to see a familiar face when we walked into the dining room at RMH. Maribel & Mateo are back - they were here when we first got here in September & I think they left in December sometime. They will be here for a month. Also, we had a very nice dinner - soup & salad - I couldn't beleive it! I mean for the 4 1/2 months I was here we might have had soup & salad three or four times total!

Jolie came up with me again - she is such a lifesaver. I honestly don't know how I would manage Grady, luggage, meds, cleaning our room after we leave, etc. without her. She is awesome!

I almost forgot to mention, when we went back to the pediatrician see if Grady's ear infection was gone, they checked his weight & it was the same as the week before. He is still very small for his age so we are supposed to try to talk to the dietician up here & see if she has any suggestions.

Well - I need to get going. We still have some settling in to do and we have a long day ahead of us tomorrow.

Happy Mother's Day!

2008-05-11T14:35:00.004-04:00

Me & the boys on Mother's Day.

Last week was pretty crazy. Ken & I were both sick (some type of 24 hr. bug), I was trying to get ready for a garage sale and by Thursday evening we noticed that Grady was not himself. He was not eating well, was tugging on his ear & just fussy in general. I was pretty sure he had another ear infection so Friday (right in the middle of my sale) I took him to his pediatrician & she confirmed it. He has a double ear infection & is on an antibiotic for it. Fortunately, I had a lot of help from my mom & Jolie last week & survived everyone being sick & the sale.

Ken and I went to a wedding Friday night while my mom stayed with the boys. We had such a good time being out together without kids! We felt guilty for how long we stayed, but we were having so much fun catching up with everyone and not worrying about meds or feedings. We definitely need to make a point of going out together more often!

We were able to go to church today (Mother's Day). It was great to be back again - I had missed a couple of Sunday's while I was in Oklahoma. We went out for lunch and now I am planning on taking a nap while Ken watches the boys! I can hear my bed calling me - gotta go!

2008-05-08T08:41:00.007-04:00

Grady and Aunt Leah

Colby with all of his cousins from Oklahoma.

Colby saying goodbye to Uncle Wes.

Grady in his exersaucer for the first time.

He loves it even though he can barely reach the floor.

Well, we made it back from Oklahoma. Our flight came in Saturday at 10:00 pm. The boys did great. I was very disappointed with the airline, though. I had taken our new stroller (I know - dumb move) and it was checked in plane side and somehow they managed to twist the frame so that one of the front wheels doesn't even touch the floor anymore. I was very frustrated and did file a claim so now I am waiting to see if they will do anything about it. The stroller was a gift we got at the Cleveland Clinic for Christmas. It is one of those car seat stroller combos. Fortunately, I still have our old stroller - I'm just mad at myself for not thinking to take the old one in the first place! Oh well - I guess it is a lesson learned.

Tuesday I had a meeting with a lady from Help Me Grow. It is thru this program that Grady might be able to get some therapy if they feel he needs it. He is almost 8 months old now but his adjusted age is 6 months. He is doing a lot of the things a 6 month old would do, but not everything. He will get evaluated on May 27. He will also have another biopsy in Cleveland on May 19.

It seems as though we have a little bug going around our house this week. Colby threw up on Monday, I got sick yesterday & now Ken is home sick today. The only good thing about it is it doesn't seem to last very long. Hopefully, Grady won't come down with it.

2008-04-30T14:49:00.005-04:00

Colby, Grady & I on the airplane - we look like we got up at 2:30 am!

Colby feeding the fish at a local nursery.

Colby with his cousin Brooke.

I am so sorry that I haven't posted for so long. We have been BUSY! We made it out to my sister's in Oklahoma - which is where I am right now. It's me & the boys & my mom. I am so glad that my mom decided to come. The flight out was good, but I don't know how I would have managed with 2 little ones by myself. Both boys did well on the flight - no problems with their ears or anything. Colby was so funny when we left. He was kind of grumpy & tired of waiting (we had gotten up at 2:30 am) so when the plane finally took off, he said real loud "Now this is what I'm talking about!" Everyone around us was laughing.

We have mostly been hanging out at my sister's house & taking it easy. She has 4 kids, so Colby is having a ball playing with them. I am afraid that when we get home he will be bored! I am missing having Ken to help with Grady. My mom & sister help during the day, but Ken usually gets up for the early morning feeding & I am really starting to feel worn out from the lack of sleep. The last 2 mornings I have gone back to bed for a couple hours after mom is up to watch Grady. Tomorrow we plan on heading to Tulsa for a day of shopping. The boys will stay with my sister's husband and mother-in-law. I am really looking forward to it.

Oh - I almost forgot - Colby had his kindergarten screening on the Thursday before we left. He did so good! We got the letter saying that he is ready to go (he turns 5 on July 14). He is very excited. He will be in the Monday, Wednesday every other Friday class. I can't believe he will be going to school this fall! I can't wait to take him to get his school supplies - he will be so proud.

2008-04-17T11:46:00.002-04:00

We did make it to church on Sunday & we had a great time. We are looking forward to returning on a regular basis.

We had a bit of a scare on Tuesday. Ken fell approx. 15 - 20 feet at work. He landed on his back. He was taken by ambulance to the ER where they did a CAT scan on his back & found that nothing was broken. He is very sore and will be off of work for a few days. We are so thankful that he was not hurt more seriously. He could have been paralyzed or even killed. God was definitely watching over him!

Grady has been more fussy than normal the last couple of days. We thought maybe he is teething (he is also drooling more) but we have not found any bumps on his gums yet. He is still getting up quite a bit a night. It seems he is not eating enough at one time to get him thru the night. Ugh!

2008-04-12T23:21:00.005-04:00

Grady & Isaac

Hannah, Mariah & Colby

Grady eating cereal.

Our friends from RMH, Jason, Tiffany, Hannah and Isaac, are in this weekend to finalize Isaac's adoption. They had some free time so they came to visit at our house & then we all went out to eat along with my sister's family. It is so exciting to see how Isaac is growing and developing. Essentially, Grady & Isaac are the same age (they were both due in early November) even though Isaac was born in July & Grady was born in September. We had a lot of fun watching them "play" and comparing notes on things that we notice developmentally and things that we are concerned about. We also enjoyed reminiscing about life at RMH and all the interesting families we met at the house. It was probably one of the hardest times in our lives and yet we have so many good memories of the house and the people we met there.

Unfortunately, Grady did not continue with sleeping thru the night. He has been getting up around 2:00 or 3:00 each night. It is a little frustrating. I was really hoping the cereal would keep him full until morning.

We are still planning on going to church for the first time tomorrow. We are really looking forward to it. Today was Ken's birthday so it will be a nice present to get to go to church tomorrow.

Thank you to Bonnie Swartzentruber for getting me the information I need to hopefully get Grady therapy in our county. The wheels are finally in motion!

2008-04-10T09:54:00.003-04:00

Colby folded all these towels by himself - he was so proud!

Grady slept thru the night twice in a row & then last night he got up at 3:30 am. I was gone last evening so Ken didn't want to feed him baby food & gave him a bottle instead at his 6:00 feeding. I am really curious if that is why he didn't sleep as long. I am definitely going to watch & see if it makes a difference.

Grady has also been sleeping a lot during the day (I guess I don't really know how much he should be sleeping). With transpant babies, small things like sleeping too much or being lethargic can be cause for concern (sign of rejection). Right now, I don't think it's anything except me being paranoid, but I am definitely going to keep a close eye on him. Otherwise, he is really starting to seem like a "normal" baby. He is reaching for toys on his little gym and is cooing and smiling a lot more.

2008-04-08T21:55:00.003-04:00

Grady eating cereal.

Grady slept from 8:30 pm to 5:30 am last night. We are keeping our fingers crossed that he will keep it up. Mom & Dad really need some sleep!

2008-04-07T21:52:00.003-04:00

I don't think Grady is very excited about his silly hat.

Grady had an appointment this morning to follow up with the pediatrician after his bout with RSV. His weight is at 11 lbs. 14 oz. - not a huge change, but not terrible considering that for a week he couldn't keep formula down & was on iv feeds & Pedialyte. The doctor would like to see him gain weight faster so I am supposed to start feeding him rice cereal mixed with fruit (baby food) twice a day. I tried today & it is almost impossible. He just sticks his tongue out & pushes everything out. I can't even really get him to open his mouth wide - hopefully he catches on quick - I think we were both getting frustrated.

We are still having some issues with him sleeping at night & we are trying some of your suggestions, so thanks for the advice. The doctor did say that at this point if he wakes up hungry, he really does need the extra calories, so we can't just let him cry it out.

Our doctor is also working on getting a therapist to come to our house to work with him. We've been a little frustrated with this issue. When we left rehab in Cleveland, they were supposed to set us up & nothing ever came of it. We finally found out after our insurance company called rehab that they were having trouble finding someone to come out. Hopefully our local pediatrician can figure something out. She feels that he is doing well, developmentally, right now, but she doesn't want him to fall behind. Please pray that they can find someone to come to the house. I really don't want to have to take him somewhere once or twice a week for therapy on top of all of his other appointments.

Also, Tiffany (a friend that I met at RMH) is having some concerns about her little Isaac. Isaac was born VERY premature & they are worried about some developmental issues. You can read more about them here.

Thanks so much to all of you for following our story & all the encouraging posts. We are hoping to go to church with Grady this Sunday for the first time. We were going to go the week after Easter & then Grady got sick - so keep your fingers crossed. We are so excited to go back!

2008-04-03T12:35:00.006-04:00

Grady trying out his Bumbo chair.

Grady checking out his new toy from Jolie & Roy.

Colby & Molly

I let Colby take a bath with Molly the other day. It was going fine until Ken stopped in & Molly jumped out of the tub to see him.

It seems like Grady is feeling better every day. He still has a little bit of a cough & sounds a little congested, but overall he has definitely improved. I'm starting to get a little frustrated that he is not sleeping thru the night. Colby started sleeping thru the night at 8 weeks & while I didn't expect that from Grady, I was hoping that by now he would be. I know that he can do it because he did twice in a row - just to tease us! Does anyone have any advice? Do we just need to let him cry? He has an appointment with the pediatrician on Monday & I will definitely be asking her.

I think Colby is finally over his cold & Ken and I are over the worst of ours. We are still a little congested but feeling much better. I am looking forward to warm weather!

2008-03-29T17:27:00.003-04:00

Grady in his swing at the hospital.

WOW - What a week! What we thought was going to be a quick trip to see Dr. Boyle turned into a 6 day hospital stay. The good news is that Grady came home today & seems to be doing fine. He is coughing quite a bit still, but the doctors said they expect that to last another week or so. Sorry I couldn't keep you all updated, but since this was unexpected, I didn't have my laptop or access to another computer. Here is what my week was like:

Monday - We got up early to go see Dr. Boyle. Ken went with me since we became concerned during the night & didn't want to wake anyone up. We met Jolie on the way to Cleveland so that Colby could stay with her for the day. When we got to Cleveldand, they ordered an echo, ekg, chest x-rays and bloodwork for Grady but everything looked good. Dr. Boyle also felt that Grady was not himself & had the Infectious Disease doctors come to take a look at him. They took cultures (swabbed his nose & throat) and sent them off to the lab. By this time it was around noon & the results would not come back until Tuesday. Dr. Boyle told us that Grady would be admitted for the night until we know what is wrong. We made plans for me to stay at the hospital with Grady while Ken would come home so he could work. I was going to get a room at Ronald McDonald House, but Dr. Boyle requested that I stay at the hospital with Grady.

Tuesday - We got the results back (RSV). I was pretty shocked that he had RSV. I thought he had been getting his Synergis shots (monthly vaccine for RSV given during RSV season). It turns out his last shot was January 30 - he should have gotten one the end of February but I did not think of it with all of the other things we need to remember for him. Dr. Boyle apologized & said he should have really stressed it with Grady's pediatrician. He said that Grady will still be at risk next winter & we will make sure he gets his shots then. Grady's IV (he was getting fluids so he wouldn't get dehydrated from not eating) went bad & they tried twice to put a new one in his foot. They couldn't get it & decided he may not need it. We attempted to feed him, but he would not drink the Pedialyte & anytime he drank formula he would vomit. I had a horrible night's sleep. The nurse was not very helpful (expected me to do all feedings, etc. - isn't that what they get paid for?) and she insisted that it is not possible to turn his monitor off in my room. Those monitors are so sensitive & every time Grady would move the thing would go off. I had an eye mask & earplugs & still couldn't sleep. I did, however, let the nurse know that I need a break & she would have to do the night feedings.

Wednesday - They decided to put an ng tube (nasal gastric tube or feeding tube) in since Grady would not drink Pedialyte & couldn't keep formula down. They began giving Grady pedialyte thru the tube & he was able to keep it down. I started feeling sick today - major head cold. Doctors said I probably got it from Grady. Adults & older children can carry the RSV virus but it is more like a cold for us. I had a much better nurse today. She turned the monitor off in my room - imagine that - the other nurse said it couldn't be done. She was very helpful & I asked her to please make sure that the night nurse knows how to turn the monitor off so I don't have the same problem as Tuesday night.

Thursday - Still working with Grady to drink Pedialyte from the bottle & trying formula every now & then to see if he would be able to keep it down. I am really starting to feel miserable now - just a major head cold.

Friday - Grady was starting to keep some formula down. Ken came up after work to give me a much needed break. I came home & finally got a good night's sleep. I had taken Sudafed (what I thought was non-drowsy) before I left Cleveland & I struggled to stay awake the whole way home.

Saturday - Grady was discharged around noon. Since I am still not feeling great & I had just driven home from Cleveland last night, Ken's brother, Hootie, was nice enough to take our van to go get them. Grady is sleeping in his pack & play right now.

Things I learned this week

I learned to always, always take a small travel bag when Grady has an appointment in Cleveland. We went up there Monday with nothing except stuff for Grady - meds, extra sleepers, etc. I had only the clothes I was wearing. The hospital gave me a small kit with a toothbrush, toothpaste, soap, etc. On Tuesday my mom brought me some things of hers (extra outfits, lotion, brush, handheld game) which I desperately needed. She didn't come to my house to get my things because it would have added an extra hour to her trip. I went the entire week without my blowdryer, flat iron, makeup, shaver & cell phone charger and I had a total of 3 outfits! I thought about taking a picture of myself for the blog but I was too embarrassed!

I learned to not to be afraid to ask the nurses to take care of Grady when I'm too tired. A lot of them just expect me to do it since I'm there & while I don't mind taking care of him most of the time, there comes a time when you are just too exhausted to do it & that is what they are there for.

I learned that Grady could get RSV again. It is very rare because it would have to be a different strain, but it is possible. There is nothing they can give to cure RSV. It has to run it's course.

I learned to trust my instincts. Dr. Boyle told me almost every day how glad he is that we weren't scared to call him at 1am when we were concerned. He said he doesn't want us to be heros, Grady is fragile & if there is any cause for concern we need to let them know.

I learned that there are no chocolate bars at the Cleveland Clinic. One night I was really craving chocolate so I thought I'd go to the cafeteria & see what they have in their vending machines. They have baked chips, granola bars & gum. You can also buy apples, sushi, yogurt and a host of other health food at all hours of the night but a chocolate bar you cannot find. My sister suggested that I look at the gift shop, so Friday on my way home I stopped in just out of curiousity. They have a few sugar free chocolates (yuck), fruit snacks, granola bars, gum, etc.

I learned that parking in the parking garage is free if you are there for less than an hour. When Ken came up to switch with me, I made free parking by 1 minute. I was pretty happy about that!

I learned that the hospital bed is very uncomfortable if you spend 5 days in it. My neck & back were so sore by the time Ken got there, I begged him for a massage.

I learned that if there is a good show on tv that I really want to watch, a doctor or nurse will come to talk to me or do a procedure or Grady will throw up & need the bedding changed at that exact time.

I learned that you can throw up an ng tube. It is supposed to go in thru the nose & down to the stomach & if you vomit with enough force, the tube can go in thru the nose & out thru the mouth. This actually happened to Grady this week - hope I didn't gross anyone out.

That about sums up my week. I hope yours was better than mine:-)

Please pray for Grady and the family!!!!!

2008-03-25T23:30:00.002-04:00

Jeannie called me earlier this evening and asked me to update the blog. As she mentioned in her previous blog they took Grady to the Cleveland Clinic. They ran some tests yesterday and the results today indicate that Grady has RSV. Ken has gone back to work and Jeannie is staying in the room with Grady. Right now Grady is on antibiotics. Ken and Jeannie did not talk to Dr. Boyle after the results were in, hopefully they will know more tomorrow.

Please pray for healing for Grady and for strength, peace and comfort for Jeannie as she is very tired. Colby was with Jolie for a few days and will be staying with Ken's parents some. Steve and Rosy and their children are visiting us in OK right now so we all feel pretty helpless.

Ken and Jeannie, please know that we are lifting you all up in prayer. May God give you strength, peace and comfort. We love you!--Leah in OK

2008-03-24T02:01:00.002-04:00

It seems as though Grady has picked up Colby's cold. We noticed Saturday that he was coughing & a little more fussy than normal. We also noticed that in the last couple of days after he eats, he seems like he is in pain. He fusses for a while & then eventually ends up throwing up. It has gotten progressively worse & this morning at 1:00 he was screaming. I ended up calling Dr. Boyle because I was very concerned. Dr. Boyle would like to see him first thing in the morning, so by the time you read this (unless you are a very early riser) Ken, Grady & I will be on our way to Cleveland. Please pray that this is nothing serious.

2008-03-21T14:33:00.002-04:00

Grady's appointment went well this morning other than that the doctor was tied up at the hospital & was 45 minutes late. His weight is up to 11 lbs. 7 oz. & he is 24 1/2 inches long. The doctor was pleased with the weight gain even though I was a little frustrated he didn't gain more. She said that she looks at it over a wider period (not from week to week) because it fluctuates too much otherwise & looking at it that way, he is doing great.

We had her take a look at Colby as well because he started with a runny nose & cough yesterday. It turns out he has an ear infection & we started antibiotics for him. He is supposed to go to a birthday party tomorrow for one of his little friends & is going to be really upset if he can't go. I guess we will have to see how he is doing by then. I had taken Colby to the mall & WalMart earlier this week - I'm guessing that's how he ended up with it. Oh well - it was bound to happen sooner or later. We will just have to be extra careful with handwashing.

2008-03-19T21:00:00.005-04:00

Colby & Mariah coloring Easter eggs.

Colby & Grady

Mariah & Grady

There is not a whole lot new to report except that Ken put a sleeper on Grady this evening & it was too small. He has officially outgrown the newborn size & is wearing mostly 0-3 month outfits. I am anxious to see what he weighs at his doctor appointment Friday.

Mariah came over this evening to help Colby color Easter eggs. They had a lot of fun & are now watching Tom & Jerry. It is so funny to listen to Colby when he watches it. This has to be at least the 5th time he's seen this episode & he still laughs out loud!

A while back I had posted about my insurance situation at work. We were expecting the premiums for the entire business to increase 30 percent because of our claim with Grady - which my employer said she could handle for one year and then we would have to figure something else out. We got our renewal for the insurance & it actually went down 5%. We have no idea how this could have happened except that it was God! So, now, we have some extra time to work everything out and who knows, maybe it won't go up next year either?!

2008-03-14T10:33:00.007-04:00

We have come from this...

...to this in 6 months!

He's still a little peanut!

Colby is a great big brother!

Grady look so much older in real clothes!

Grady's favorite position to sleep.

Our little miracle is 6 months old! Can you believe it?! He has come such a long way (as you can see from the pictures). He can roll from his back to his stomach, he is cooing, smiling and laughing out loud & he has slept thru the night a few times now. We are really hoping the sleeping thru the night becomes more consistent. He did it 2 nights in a row so I really had my hopes up, but the last several nights he has gotten up again. I'm not quite sure how to "make" him sleep & not get hungry - I'm sure it will come (not soon enough though).

He is doing well with his medications. He is still on a lot of medicine, but he takes it much better than he did at first. Also, the vitamin that he hated, he doesn't have to take anymore. I am still looking forward to the day that he is down to just 3 meds at 8am & 8pm - it will be a breeze then.

Grady definitely loves attention. He is such a little stinker. I can lay him down & he will fuss until someone comes and talks to him & as soon as you walk away he gets mad again. It's hard to get anything done around here but that's ok. Also, he won't go to sleep (except at middle of the night feeds) without being bounced or rocked which is completely opposite of what Colby was. We had taught him from the beginning to fall asleep on his own. We didn't have that luxury with Grady & I don't have the heart to just lay him down & let him scream. I'm sure I will have to at some point - I guess because of all he's been thru he's getting a little spoiled.

I can't wait for spring. Hopefully, when the weather breaks, there won't be as much sickness going around & we can finally go out more. Ken arranged for Michelle & I to go out tonight while he watches the boys. Yippee!

2008-03-13T20:43:00.004-04:00

GRADY IS 6 MONTHS OLD!!

Here are a couple of videos of the boys. I will try to post more pictures and an update tomorrow.

2008-03-10T22:50:00.004-04:00

Jolie with Grady in recovery.

Let me start by saying that Grady slept thru the night Saturday & Sunday - yippee!!! Hopefully he will continue! It's amazing how good I feel with a full night's sleep!

Jolie, Grady & I went to RMH Sunday night since Grady had a biopsy scheduled for 6:30 am (Colby stayed with my sister Rosy). We got to RMH around 6:00 pm - I wanted to be able to relax & unwind after the drive, especially since we had to get up so early the next morning. I had really been craving Chipotle (I haven't eaten there since January 31 - the day we came home) so on the way to RMH I got myself a Fajita Burrito Bowl and some chips & salsa to go! Yummy!

Grady's biopsy today went very well. The procedure only lasted about an hour & then he had to go to surgical recovery for about an hour. From there we went to echo & EKG & then to the M40 floor to be monitored. They allowed us to leave the hospital at about 2:00 but we were supposed to stay at RMH until the results came back. Dr. Boyle finally called at about 5:45 with the results - ZERO rejection - and cleared us to go home. I had to pull Grady's iv out at RMH (they had left it in just in case there was any rejection). He was pretty upset when I did it but he got over it pretty quick.

We decided to eat at RMH while we waited for the results since it was getting so late. I bet you can't guess what we had - well ok, you probably can - pasta of course. I was able to tolerate it, though, since it wasn't the 3rd or 4th time in a week that I was having it. I know you all think that I hate pasta but I really don't - I just get tired of cooked noodles with pasta sauce poured on top which is what the pasta at RMH consists of. I missed a great meal at home tonight. A lady that Ken is working for sent a really good meal home with him since she knew we were in Cleveland all day. Good thing there are left overs - I will definitely be enjoying it tomorrow!

Well, I am exhausted! I'm going to head off to bed - hopefully Grady will sleep thru the night, but if he doesn't, Ken has offered to get up with him. What a sweetheart!

2008-03-08T10:08:00.001-05:00

2008-03-07T18:16:00.009-05:00

When Grady gets mad he pushes with his feet & ends up with his head on the floor.

Colby shoveling the driveway.

In the tunnel daddy made.

The trip to the pediatrician went well this morning. Grady's appointment was at 8:45 so we beat the storm. He is up to a whopping 11 lbs. 4 oz. The pediatrician is VERY happy with his progress. She had his growth charted & it pretty much spiked straight up this last couple of weeks - very good news. The biopsy is Monday morning so hopefully we will get good news there as well. It's kind of scary because every time Grady is fussy, seems to have a slight fever or throws up, I worry about rejection. These are some of the symptoms of rejection but also very normal things that most babies experience at some time or another - it's just with him we don't know if it's something we should be worried about or not - so in a way even though having to have a biopsy is not fun, it is reassuring when the results come back with zero rejection, so please pray to that end.

So the big news in our area is SNOW! We were supposed to get 2 to 4 inches today & 6 to 10 tomorrow. The weather man was right for today (approx. 4 inches) and we will see about tomorrow. Ken came home from work early because of the weather so he and Colby shoveled the driveway & played in the snow for a while. Roman & Sue are coming over tonight - hopefully Grady will cooperate so that we can play some games.

2008-03-06T19:49:00.003-05:00

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."

2008-03-03T23:08:00.003-05:00

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!

2008-03-02T21:09:00.003-05:00

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.

2008-02-27T11:31:00.005-05:00

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!

2008-02-22T14:59:00.007-05:00

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.

2008-02-20T22:20:00.005-05:00

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)!

2008-02-17T10:53:00.004-05:00

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!

2008-02-14T22:23:00.006-05:00

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.

2008-02-12T22:42:00.006-05:00

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.

2008-02-10T23:48:00.001-05:00

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.

2008-02-08T00:03:00.000-05:00

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.

2008-02-06T20:19:00.000-05:00

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!

2008-02-05T22:04:00.001-05:00

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

2008-02-03T21:45:00.000-05:00

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.

2008-02-03T21:13:00.000-05:00

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!

2008-02-02T23:58:00.001-05:00

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.

2008-02-01T21:15:00.000-05:00

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.

2008-01-30T23:02:00.000-05:00

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.

2008-01-29T23:11:00.000-05:00

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!

2008-01-28T22:58:00.000-05:00

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.

2008-01-28T00:16:00.001-05:00

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.

2008-01-26T14:43:00.000-05:00

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.

2008-01-24T22:08:00.000-05:00

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.

2008-01-23T20:55:00.000-05:00

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.

2008-01-22T21:04:00.000-05:00

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!

2008-01-21T22:10:00.001-05:00

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?

2008-01-21T00:43:00.000-05:00

"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!

2008-01-18T21:28:00.000-05:00

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!

2008-01-17T22:07:00.001-05:00

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.

2008-01-16T22:40:00.001-05:00

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.

2008-01-15T21:46:00.000-05:00

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.

2008-01-14T21:21:00.000-05:00

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.

2008-01-13T21:32:00.000-05:00

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

2008-01-13T00:00:00.000-05:00

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.

2008-01-11T21:41:00.000-05:00

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.

2008-01-10T20:35:00.000-05:00

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!

2008-01-09T21:00:00.000-05:00

Mommy with her two handsome boys.

Rosy dressed Colby up today to come see me & he couldn't understand why.
He said "but we're not even going to church."

Colby pouting after he lost the Sorry game.

Colby wrestling the stuffed animals at RMH.

Well - we can add another therapy to Grady's list. Today the music therapist introduced herself. She wanted to know what type of music Grady likes. I was like "um - I don't know" - he's been in the hospital since he's been born & other than his mobile I never had a cd player or anything. There was a channel on tv that just played soothing music & when we'd leave the room we put it on there. I'm starting to feel very overwhelmed. I'm sure that they don't mean to, but when the therapists ask me all these crazy questions I feel like I haven't done enough for Grady. It makes me feel like there were things I should have been doing while he was in the other hospital.

Rosy & Steve came up today & they brought Colby with them. I was so glad to see all of them - especially Colby (no offense Steve & Rosy). I have really been missing him. They all came to rehab for a while & then we went back to RMH. I played a game of Sorry with Colby & then we made a trip to Target. Colby had gotten a gift card for Christmas & he wanted to spend it. It was nice to get away for a little bit. Jolie rode back with Steve, Rosy & Colby this evening so I am by myself again until weekend when Ken & Colby come join me.

Several of you have asked questions about how to post messages on the blog so I will explain it as best as I can. I absolutely LOVE getting posts so I want to make sure that you all know how to leave one. No excuses guys:-) Underneath each of my daily updates you will see in small light blue print posted by Jeannie. Right beside that it says comments. Click on comments. It will take you to another screen. On the top right there is a box that says Leave Your Comment. Type your message in that box. You do not have to sign up for an account if you don't want to just click on anonymous under choose an identity (make sure to sign your name in the message box if you choose this option so that I know who you are). You can then preview your comment if you would like but most important - make sure you publish your comment. That's all for tonight. Sometimes I'm not sure if I am boring everyone or if there are things you would like to know that I am not telling you about. If so, feel free to notify me by leaving a comment:-) Hint-Hint

2008-01-08T20:25:00.000-05:00

We got to rehab at about 9:45 today. Grady was wide awake & looking around. We started talking to him & he actually cooed today for the first time - so exciting! Jolie said she got him to smile at her but I missed it, so I don't know whether to believe her or not. Ha!Ha!

We have been absolutely overwhelmed by all of the different therapists at rehab. There is physical therapy, occupational therapy, speech therapy (you wouldn't think Grady would need this but it has something to do with him drinking out of a bottle), play therapy..... I'm sure I've missed a couple & I'm not exactly sure what each one of them does yet. Today everyone wanted to evaluate him so it was crazy - he didn't fall asleep until about 2:45 & then he was supposed to get a feed at 3:00. I asked the nurse just to put it thru the feeding tube since he had just fallen asleep. She said ok but didn't seem to think that I knew what I was talking about. Later, the doctor came in & she said that if Grady gets too tired or needs a nap, we need to tell the therapists to stop & come back later. They are also changing his feeds a bit. The doctor wants him to gain more weight (she says he is quite skinny but she should have seen him before). I guess in her defense he is still wearing newborn sleepers & preemie small diapers. She is afraid he is burning too many calories when he is taking oral feeds, so they are only going to give him 3 feeds orally & give him the rest of the feeds entirely thru his tube. Also, a therapist is supposed to give him 2 of the feeds & observe us giving him the 3rd - so we can only give him 1 time per day at this point. I am feeling just a bit overwhelmed with everything.

Jolie & I decided we were going to leave around 5:00 but Grady decided different. Just before we wanted to leave he started screaming & wouldn't stop. We checked his diaper, made sure nothing was poking him, gave him his binky, etc... anything we could think of to get him to calm down & he wouldn't . Finally we went & got his nurse. She held him for a while trying many of the same things that we were trying & they didn't work for her either. At 5:15 she said that he was due for his Ativan (for agitation - he's gotten it since birth) at 5:00 so she went to get it. She gave it to him & about half an hour later he was fine. Since it was almost 6:00 we decided to stay & watch his therapist feed him & then we finally left after that.

The pictures of Grady without clothes are where one of the therapists was working with him.

Also, I forgot to mention in last night's post that Grady's bilirubin levels are almost down to normal - Praise the Lord!

Rehab - here we come

2008-01-07T20:55:00.000-05:00

Today was very stressful. My aunt Jolie is staying with me for a few days - boy was I glad to have her today. We went over to the hospital at around 9:30 this morning. Grady was doing fine - plans were still to transfer him to rehab. He had a routine echo soon after we got there - he did great just squirmed a little - but what do you expect from a baby? A little while later a doctor came in & said that they need to give Grady his immunizations before he gets transferred. They took him to another room (to save us the trauma of seeing him in pain) & gave him 3 shots. By the time his 12:00 feeding came around he was so tired from his busy morning that we couldn't wake him up to eat. He only took about 4 mls. and they put the rest thru his ng tube. The nurse weighed him & he is up to 8 lbs. 4 oz. (a gain of 4 oz. since last time). At about 2:00 the transport team arrived & said they were ready to transfer Grady. By the time they were ready to go it was around 2:45. Grady went by himself in the ambulance. We had to go to the parking garage to get our van and after one wrong turn made it to the rehab facility. When we got there it was already after 3:00 & Grady was crying because he was hungry. The secretary grabbed me to fill out paperwork so I had Jolie stay in with Grady holding the pacifier in his mouth. When I got back to the room I was bombarded with questions from 2 different doctors and a occupational therapist. I wanted to say "Isn't this in his chart? My child is hungry - feed him!" but I didn't - instead I answered their questions as best as I could and finally at about 3:45 they started feeding him. After they fed him he was still very fussy & I asked him if he is scheduled for any pain meds. He was due for pain meds at 4:00 & of course it was past 4:00. They said they have the order in & are waiting for the pharmacy so finally at about 5:00 he got his meds & calmed down. We took a tour of the facility - our primary nurse seems really nice & it kind of put my mind at ease. I know it seems crazy, but when you are in these situations you get really comfortable at a certain place & even though it means that you are getting closer to going home - these moves are quite traumatic. Let's see - we started at Rainbow Babies NICU, transferred to the Cleveland Clinic PICU, moved to stepdown at the Cleveland Clinic and now Rehab (in a completely different building) with the Cleveland Clinic. Each time I think there is no way I can get used to these different people taking care of my baby - but each time it has turned out fine. I just need to have faith that these caregivers know what they are doing & that God has placed Grady there for a reason. We have no idea how long he will stay in rehab.

On a different note, Colby (my 4 year old) is staying with Rosy (my sister). He got a Webkinz for Christmas & she helped him get online today to play with it. I am amazed at his computer skills at 4 years old. When he comes up to the Ronald McDonald House all he wants to do is play on my laptop. I can go to http://www.disney.com/, click on games & he is good for hours. He is also into the Cars movie. He collects all of the little die cast cars from the movie (I think he has over 30 at this point). He will play for hours lining them up, driving them on his road rug & the latest has been marrying the girl cars to the boy cars. He is such a sweetie & I miss him a lot!

Well, I see that I am going to have to start paying attention to the Buckeyes game. When I started this blog they were up 10-0 & now it's tied. Go Buckeyes!

Recap of our journey so far

2008-01-06T18:52:00.000-05:00

It all began around the end of August - I went to the doctor because I was having pain in my side (28 weeks pregnant) - he found that the baby had a heart defect and sent us on to Aultman. Doctors at Aultman agreed & referred us to a cardiologist at Akron Children's. The cardiologist said that even if I was able to carry the baby full term, the prognosis was poor. I had an amnio (which came back fine) and many biophysical ultrasounds. Doctors at Aultman said that our best chance was to deliver at University Hospitals because they have the facilities to deliver the baby & get him in to surgery right away.

9-10-07 - Our first visit to University Hospitals. Doctors did an ultrasound & biophysical ultrasound. They put all our information in their system.

9-11-07 Started having contractions around 10:00 p.m. My contractions were not strong, but were only 2 minutes apart. We went to Aultman because we didn't think we could make it to Cleveland. By the time we got there, I was dialated to 3-4. They gave me medication to stop the labor. I spent the night at Aultman.

9-12-07 Since the contractions stopped, they felt it was safe to transfer me by helicopter to University Hospitals in Cleveland. I was told I would be here until I deliver.

9-13-07 Uneventful day until about 3:45 pm. I was on the phone with my boss when my water broke. Contractions started right away and were 2 minutes apart. Nurses took me to labor & delivery. Grady Evan was born at 5:07 pm weighing approximately 4 lbs. 10 oz. (9 weeks early) & rushed immediately to the cath lab. Luckily, the cardiologists were still here (God's perfect timing). Grady's heart stopped once before the catherization and once during but they were able to get his heart going again & the procedure was a success. Grady was stable. When the doctor came in he said that God must have been smiling on Grady because if not for the little squirt of blood between his right and left atrium, he would have died.

9-27-07 Grady was 2 weeks old today. We thought everything was going ok and that he would require some surgeries but doctors dropped a bomb on us today. They said that there is no surgery that they can do to help Grady's heart. They said we have 2 choices: comfort care (do nothing and let him die) or a heart transplant (very hard to get for a baby Grady's size) which would mean a lifetime of medicines, possible side effects and possible future transplants.

10-3-07 After much prayerful consideration, we decided to list Grady for the transplant. We felt that listing him would leave the decision up to God. He was not guaranteed, by any means, of getting a heart.

10-11-07 We were transferred from University Hospitals to The Cleveland Clinic. University Hospitals do not do pediatric heart transplants.

10-16-07 Doctors did a surgery to close Grady's PDA valve to see if his heart function would improve. They need to try everything possible before someone is listed for a transplant. A transplant is considered the last resort.

10-17-07 Grady's right lung collapsed. Doctors were able to reinflate it & stabilize him.

10-23-07 Grady was put on the list for a heart transplant. Doctors told us it could be a long wait. Grady was only about 5 lbs. 5 oz. & it is rare that healthy hearts become available for babies this small.

10-31-07 After being on the list for only 9 days, we got the call that a possible match had been found. Grady went in to be prepped for the operation at 11:00 pm.

11-1-07 At 12:30 am we got the call that the heart was good and they were going to make the incision. At 3:30 am they told us the first part of the surgery was done. The new heart was in & beating. At about 7:10 am the nurse called to say that Grady was on his way back up to his room.

12-10-07 After 2 failed attempts to extubate (take the breathing tube out), Grady was extubated successfully this time. Dr. Mumtaz (Grady's surgeon) was in today & was saying that Grady is a miracle baby. He said that when a baby's heart stops with the type of defect Grady had, it doesn't start back up again. He also said that doctor's could not figure out why the donor baby died. He said that all the organs were perfect and it was as though that baby was an angel & was just here to bring Grady his heart.

12-14-07 Grady was moved out of the intensive care unit.

12-20-07 Grady had his first biopsy at 7:30 am. The results came back late this afternoon - ZERO rejection!