FINALLY - a written update!

As you can see - Wesley is continuing to grow like a weed. Now I've always found that phrase a bit odd. As someone with a child who grows about an inch a month and weeds that grow about ten inches per month, I can now relate. Wesley has gone from being between the 1st and 2nd percentiles to the 65th percentile in height. For weight be was basically at the negative twentieth percentile (if there were such a thing) to the 65th percentile. Honestly though, Wes was between the zero and the 1st percentile for weight. The doctors were concerned about his weight, but needless to say, that's a problem of the past!! He has more than recovered physically from his surgery.

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We are struggling with eating by mouth, but that has more to do with the tube feedings. We recently went on vacation, and as soon as we got to the cottage, his tube came out. Thankfully we had a spare to put in, but it was the small mic-key button, not the long tube like he had before. The problem was that Wes couldn't be on the pump at night anymore because the button connector to the pump tubing sticks about 6 inches straight out of his stomach. Try and get a two year-old to sleep attached to that thing!! It ended up coming out of his stomach and soaking his bed with Pediasure about 3:00am after a rough half-night's sleep. So Damon and I decided to just feed him during the day to avoid the night feeding problems. Doing that though, we cannot get him to eat much during the day. He is getting five 8 oz. cans of Pediasure each day, so that doesn't allow him enough time to get hungry! And since he hasn't figured out that you can eat even when you aren't hungry, he won't eat. We go in a little more than two weeks though for a swallow test and to meet with the therapist and the surgeon, so we'll know more then.

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We went on our first family vacation to a cabin in Michigan with my family. I also realized that a vacation with a small child is not the same as a vacation without a small child. We had a great time, but it went by too quickly. I was so thankful to have so much of our family there because Wes wanted to go all the time - walking, playing, jumping. As you could see from the pictures, Wes did not like the sand between his toes! He loved playing in the water and drinking it (yuck, yuck, yuck). It wasn't easy to sleep in the same room with him though! We are used to him waking up slowly and talking to himself for a few minutes before we go in and get him up. But when we are all in the same room, he can just get out of bed and come stick his fingers in my eye sockets so I wake up!! Talk about an unpleasant awakening...

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We have stepped up the potty training efforts. Wes does great when we are at home, but things don't go so well when we are out of the house. As I came out of the bathroom earlier today, Wes was there to greet me and cheer "YAY!! Mama went potty!" Then he told me to go and get a sticker (a "goga" as he calls it that he receives when he goes on the potty). I am struggling with how hard to push him to be potty trained and when to just let him be an untrained two year-old. Any advice?

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I am sure there is more that I am forgetting, but I'll post when I remember!

FINALLY - an picture update!

I will post a written update soon, but I figure that you probably enjoy the pictures more than my words :)

first professional photograph -

Staci's parent's favorite picture

my favorite picture


Wesley blowing dandelions (yes, he did stick them in his mouth - yuck!!)

family picture -

Damon, Staci, Doda (Staci's Mom), Pawpaw (Staci's Dad), Wesley, Uncle Scott, Emily (Scott's girlfriend)

Wesley and Uncle Scott in front of a bear at Legs Inn restaurant

family picture at Legs Inn overlooking Lake Michigan

tee pee in front of the Legs Inn restaurant in Cross Village, Michigan. Damon loves this restaurant that serves Polish food!

Wesley was SOAKING WET! I would have taken off his t-shirt, but I didn't think he would go all the way into the water. I thought he would play in the sand...

Wesley showing determination to climb onto the dock from in the water

Wesley LOVED the water!

What could taste better than a little lake water?

running up and down the dock

still hating the sand between his toes

Wesley HATED the sand on the beach at the lake. Once he got used to it, he was fine.

Wesley was wide awake as we left home for vacation (it was 3:30am)

riding his new car in the garage as I packed the truck for vacation

sitting patiently (sort of) during dinner

family picture at the reception (I think the photographer's finger was in front of the flash)

waiting for the reception to start (we tried to run him around outside to burn off some energy)

the first wedding that Wesley attended (congratulations, Jessica and Colin) - Wesley did sit with us through the ceremony, and he only spoke out loud during the minister's prayer when he said his own prayer.

waiting for the ceremony to start

he put his sunglasses on all by himself

mowing the lawn just like Daddy with the hat and everything

Wesley and his buddy Duke

telling me he was "all done" at the emergency room (his stomach tube came out, so we had to go to emergency room to have it replaced. I was not happy because I had to pay $150 copay for a doctor to do what I could have done myself with a new tube in about 3 minutes - not 3 hours!!)

drinking water outside

the new "unhappy" look
because strong men just pick up their lawnmowers to move them

I will post an update soon (I promise)

Thank you to everyone who has been checking for an update! I promise to post one in the next few days. We are all doing well, and Wesley is healthier than he's ever been! Eating is an issue though, but I'll post about that later.

Thanks!!

Staci

two weeks home (tomorrow night)

It still feels wonderful to be home! The last time I was this happy to be at home was after returning from Ukraine!! We're back to work and back into the swing of things. I am always surprised how much work piles up when you are out of the office for even a few days. I am getting caught up now though.
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Wesley has been eating (even though it is not nearly as much as Damon and I would like). I think the reason is because he never has the chance to experience "hunger" and food filling that hunger. I tried to turn off his pump an hour or so before we tried to feed him by mouth, but that doesn't seem to make a big difference. We have also learned that Wes will not eat by mouth when other people are around. I am not sure what's up with that, but I figure that the distraction may be too much to handle. It isn't like eating actually holds his attention, so it's not too difficult to distract him.

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Wes goes to the doctor Tuesday. I pray that the doctor tells us that we can begin bolus feedings (this would be feeding with a syringe, using gravity to get the food into his stomach as we were doing before surgery). This would allow us to feed him only as much as needed through the stomach tube, as we work on getting oral feedings to be the main source of nutrition. I wouldn't mind if he were on the pump at night, but the daytime pump has to go (and I'll tell the doctor that too). I'll update as soon as we know more.

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Here are a few pictures from the last few weeks...

Wesley was learning how to ride the bike he got for his birthday (I did have to keep him from riding down the driveway on it though)

Wesley was "helping" Daddy mow the lawn

Wesley hanging out on the front porch (he only sat down for a minute)

Wesley and his Daddy

This was the look Wes gave me the last few days in the hospital - to me it means "seriously, how long do I have to be here?"

Wesley watching television with Duke

look at those beautiful blue eyes - I love them!

Wesley helping Mom and Dad with yard work

Wesley "smiling" (even though it looks more like a sneer)

I thought this shot showed how well Wesley has been healing. The incision on his stomach still has the surgical tape on it, but it is starting to fall off.

we arrived home

We arrived home yesterday about 7:00pm. It was great to sleep in our own beds, but I'm sure you already knew I would say that! I'll post more once I've had a chance to rest and get some work done for work.

Wesley has NO LEAKS!!

This is just going to be a quick update, but doctors tested today and Wesley does not have any leaks in the connections for his esophagus or colon!! This means that he is able to eat and drink by mouth now. About 2 hours after the test, Wesley was given a sippy cup with Pedialyte, and he's been nursing it ever since. He isn't drinking a lot, but we are so thankful that he is drinking at all!! The rest of the tubes come out tomorrow, and God-willing, we will all be sleeping at home by Sunday night.

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Thank you for the prayers. Please continue to pray that Wesley continues to improve and that he begins to love to eat and drink.

hanging out in a hospital room (day 8)

Wesley was moved out of ICU yesterday afternoon - Praise the Lord!! He is looking and acting so much more like himself that's it isn't easy to keep him occupied. I mean - there is only so much for a two year-old to do in bed for over a week, but television seems to work wonders. Now I do feel a little bit bad about letting him watch so much television and videos, but if I were in the hospital after a major surgery, what would I do? Probably watch television, and maybe read a book. Since Wesley's reading skills are right up there with his age, we're left with tv.

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Wesley was able to get out his femoral line and the right side chest drain tube today. Tomorrow he has the contrast study/dye test to determine if there are any leaks in the connections of his digestive tract. Please pray that all has healed as it should. If there are no leaks, then Wesley will slowly be able to eat and drink!!! If there are leaks, then he has to wait until those heal closed on their own. I will update as soon as I know anything.

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I was able to sleep at home last night, and I feel like a new person! I had forgotten how great it was to sleep in a nice king size bed without monitors beeping and nurses coming in every hour. I felt a little guilty about leaving Wes here, but I thought it was probably best for all our sakes for me to get some decent sleep. I am back here now, and I have a feeling that the little baby across the hall crying is going to keep me up tonight (just like it kept Damon up last night)...

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Yesterday afternoon I was able to meet fellow blogger Connie and her daughter Sydnee here at Cincinnati Children's. Connie and her husband adopted two children from Ukraine six years ago. They weren't able to meet Wes as he had just fallen asleep (FINALLY!), but since they come to Cincinnati often, I hope we can meet up again. Her blog is http://toukraineandback.blogspot.com/

Staci

smiling at Doda (Grandma) and Pawpaw (Grandpa)

kicked back watching Elmo

off the vent & doing wonderfully

Wesley was taken off the ventilator this morning and has continued to improve since then. Once they stopped the sedation medicine, it didn't take Wes long to wake up at all! He has been fighting the sedation the whole time though, so I wasn't surprised. The nurse just took off the oxygen tube in his nose, so he is very happy!

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I think the doctors will probably move Wes to the floor tomorrow and out of ICU. While I prefer him to be in ICU with the wonderful, attentive nurses, I feel better about him leaving ICU this time. He is in much better shape than he was on Saturday, and I have a much better idea what to look for as far as signs of trouble or distress for him.

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Thank you so much for your prayers - I know the Lord has heard and answered them! Please continue to pray for no infection, continued improvement and health.

Wesley on the ventilator and sedated (I couldn't bring myself to post a picture of him on the ventilator until he was off of it.)

Wesley just hanging out this evening - look at those beautiful blue eyes!! I don't think he wanted me to take his picture though.

back in ICU, but doing better

Wes was moved back to ICU less than 8 hours after being sent to the floor. Long story short - the fluid on his lungs isn't permitting them to expand as they should, so he had to be put on a ventilator. This sounds bad, but it allows his incisions to heal and fluid to drain off. He has been resting comfortably since then, so we feel much safer with him in ICU than out on the floor.

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Please continue to pray for Wes and his recovery. I pray that this is just a small setback and he continues to improve each day. I will update when we know more. Damon and I are doing well - we are able to rest better with him here since we can see what great care he is receiving.

Staci

out of ICU, still doing well

Wes was taken out of ICU this afternoon. He is resting comfortably here in his "regular" room. Damon went home for the night, but so far, so good.

Thank you for your prayers!

Staci

Wesley's head is the little tan spot to the left of Elmo on the bed.

Doesn't he look so tiny and pitiful?

out of surgery & resting well

Wesley is out of surgery and resting here in ICU. He is pretty much out of it, but he calls out for "Mama" here and there. The surgery took a little more than five hours, so it was shorter than we thought it might be (we had been told five to twelve hours). According to the doctors, everything went as planned. They closed up the spit fistula, moved the g-tube to a better location (slightly lower on his abdomen), and took out a 15cm section of colon and placed that where his esophagus should be. Wes bled very little, so a blood transfusion wasn't needed. He started talking as soon as the tube was removed, so his vocal cords are okay.

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The doctors said that the surgery could not have gone any better than it did, so Damon and I are so thankful!! The head doctor said that on a scale of one to ten with ten being the most difficult, Wesley's surgery was easily a one!! Wesley did not have much scaring and his tissues were all healthy with good blood flow, so that had a lot to do with the "ease" of the surgery.

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Here's my first cute story about Wes from today - after he was given the sedative and taken to the intubation room (I think that's what you call is), he asked a nurse to help him sit up from lying down. She did, and Wes thanked her and kissed her hand. I am so glad to hear that he isn't just polite when I am around reminding him to say please and thank you. I will say though Wesley is quite good with his manners - he thanks people for everything and sometimes nothing at all, he just says it for no reason.

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Speaking of Wesley talking...I don't know if I've mentioned this, but since coming home Wesley has become quite the talker. Sometimes when he and I are in the car and it's been a long day for me, I institute a 3 minute quiet time. It doesn't ever last the entire three minutes (unless he would happen to fall asleep which never happens anymore), but it does give me a break. Anyway...as Wes was brought into his room in ICU, he woke up slightly. Apparently he started calling for "Duke" (not Mom and Dad, of course). No one here knew what or who Duke was, so a nurse came out and asked us in the waiting room. Duke is our wild dog at home, but that's not what he was asking for. We wouldn't have known what Wes was asking for except that yesterday one of the nurses asked him what his blanket dog's name was, and Wes told her it was Duke. I have always just called the cute dog head blanket body "your dog" (such as "I'll get your dog"), but Wes has had a name for him all along - I just never asked. I'll have to post a picture of the newest Duke - he was a gift from one of my Mom's friends, and Wes absolutely loves him. He is always there when Wes sleeps, so he must be a comfort to him!

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Thank you so much to everyone who has been reading, posting, and praying for us! Our God is a God of amazing things and answered prayers, which of themselves are amazing things. Thank you also to my parents who came here early to the hospital and also came up yesterday afternoon to visit Wes! They were such a help when Wes started to get whiny from not having food for two days (to clean out the colon for use in surgery).

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I will try to post pictures later - it's amazing how many little tubes and machines Wes is hooked up to! He is resting comfortably now, so Damon and I are going to step out of his room to get something to eat.

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Have a great weekend!!

Love - Staci

heading to the hospital tomorrow

We are all doing well - getting ready for the surgery. Really that means Damon and I are trying to get ready for the surgery, as Wes has no idea what is going on. I think he might know that something is up because he only got one can of food today. We had to stop giving his Pediasure and start Pedialyte to clean out his system (to put it kindly). We head to the hospital tomorrow morning to begin the hard-core clean out, and surgery begins Friday morning around 7:45am.

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Please pray for the Wesley, the doctors and nurses, me and Damon, "the clean out", Wesley's surgery, recovery, and I am sure there are more things, but that is all I can think of right now. Thank you so much for your prayers - it means so much to us to know that others are praying on our behalf!!!

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I will post an update as soon as I know anything more.

Staci

Wesley with his basket

collecting eggs in his basket

running around the yard as he collected Easter eggs

Wesley was trying to put in earrings like I do

8 days until the surgery

We met with the two surgeons who will be performing Wesley's surgery next Friday. Everything is ready to go. To replace Wesley's esophagus, the doctors will be using a 12 cm section of his middle colon (hence the necessity of the clean out). Wesley will have incisions around the top part of his neck, around the middle of his stomach toward his side, and down below his belly button. Hopefully the doctors will not have to move his g-tube (the tube on his belly through which he is fed), but they may to be able to position the stomach in the best possible position for the attachment.

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Wesley is expected to be in ICU for three to four days, then to a "regular" room. Once a scope is done to ensure Wes has no major leaks, we start oral feedings!!! A few days later we go home, so Wes is expected to be in the hospital for about 7-10 days total.

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Thank you so much for your prayers - we can feel them. We are excited and looking forward to the surgery!!

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Love - Damon, Staci and Wesley

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Ephesians 6:10 - "Finally, be strong in the Lord, and in the strength of His might."

Wesley with "Doda" and "Pawpaw"

not exactly a smile, but I think he was excited about something

feeding his dog a french fry

"Why will the dog not eat this fry? The dogs at home would."

walking around in my vest