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.

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!

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!

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!

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!!!!!

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

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.