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.

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.

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?!

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!

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.

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!

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.

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

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

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

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

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

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

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

Uncle Wes with Colby & Grady

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

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

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

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

Grandma babysitting the boys.

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

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

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