Actually it's from Ohio to Ukraine, back to Ohio, then to China

Wednesday, October 29, 2008

update on Grandpa, more doctor's appointments

Grandpa's surgery went well. The doctors had to remove most of his stomach, but they felt they had good margins in regards to the cancer. He is headed home today. Thank you so much for your prayers - I know God heard them and answered. I don't know what the next step is in his treatment, but please continue to pray for him and my Grandmother.
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Tomorrow Wesley has an appointment with the genetics department and also an evaluation with the speech department (it will be a long morning/day). I am curious to hear their thoughts on how delayed he is. Mom and I were just discussing today how Wesley is beginning to ennunciate more clearly. When you read a book to him, he watches your mouth and tries to immitate the sounds you make. (It is pretty cute) At our original evaluation at the International Adoption Center a week after arriving in the US, the therapist said that she thought he was around a 9 month-old. Personally, I thought he was further along than that, but he didn't talk much during the appointment.
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Full day one with the walking boot is over. So far it isn't as bad as I thought it would be (it still is not what I would call pleasant). I took Wesley to the mall today so I could practice walking around without fear of embarassment (I didn't know anyone and everyone was much older than myself). I think I pretty much have walking down now, but I did figure out that it is much easier to walk with the boot on my right foot when I have a heel on my left foot. Otherwise my right leg is longer, and I seriously wobble. Now at least 27 more days to go...the good news for me though is that my foot doesn't hurt at all when I have the boot on, so I guess it will do what it is intended to do (at least I hope so)!!

Wesley blowing a kiss

here's a wonderful picture of the boot. It is not easy to find pants with a wide enough leg to cover it either - luckily I wear a lot of wide-leg pants, but most aren't big enough to cover the boot!!

Friday, October 24, 2008

doctor's appointment

The tube change went well on Thursday. There were no problems putting it in (not that we expected any, but you never know what will happen). The test done at the time of the tube change revealed that Wesley didn't have any esophagus from his stomach up, but this was what we expected. We don't know at this point how much he has from the top down, so it is still possible that the doctors can stretch it if he has enough there. If not though, then it is likely he'll have his stomach pulled up. As Damon said when we first heard about the procedure, it is similar to gastric bypass in an adult. Strange, huh? I guess he won't have to worry much about his weight later in life.
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I posted a picture of Wesley eating green beans, but please don't look at it if you think you might be grossed out by green stuff coming out of his neck.
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My Grandpa's surgery went well. The doctor felt that he had clear margins and they were able to do it laproscopically, so he will heal faster. We are so thankful for that! I'm not sure what the next step for him is, so please continue to pray.
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I also found out today that I have a pretty bad stress fracture in my foot, so I am bummed about getting a beautiful boot to wear for 4-6 weeks - YUCK!! I am happy though that the doctor doesn't want to put it in a cast for that amount of time. I am not sure how the fracture happened, but it was probably all the walking in Ukraine in shoes that weren't made for walking that much. I didn't have any trouble when I was in Ukraine (I thank God for that!!), but it started hurting less than a week after we arrived home. I had gotten used to it hurting, but then it started swelling so much I had trouble wearing shoes. The pain has gotten increasingly worse, so I couldn't ignore that! I am praying that I am a fast healer and I won't have to wear the boot that long. We'll see...
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I'll leave you with a few pictures...
after his bath - I would have loved to leave his hair like this, but I thought people at the hospital might not think it was as funny as I did (or they might feel sorry for the cute little boy with the crazy mother)




Mom's sunglasses and necklace are so much fun to wear!
Wesley was trying so hard to wait patiently for the doctor (our appointment was delayed almost an hour and he had not had any food since 10p the night before and it was about noon when I took this picture). He did have my necklace to play with which kept him occupied.
I know that this billboard probably refers to the fact that you can listen to the Cincinnati Bengals on WEBN, but I got a good laugh sitting at a stop light thinking that it referred to the fact that the Bengals have lost every game this season (like they haven't shown up for any games thus far). I want to say though that I am still a big Bengals fan - always have been, always will be. I just hope they win one game soon...


WARNING - do not look at the picture below if you get grossed out easily!! As you can see, anything that goes in his mouth comes right out his neck fistula. You can imagine the mess that a 2.5 ounce can of baby food makes. The good news is that he was eating a lot of green beans!

Wednesday, October 22, 2008

the last few days




I don't really have anything new to report. Wesley is getting a new tube put in tomorrow. Every couple of weeks, he gets a smaller tube until he can get the "button" (a g-tube that isn't really a tube sticking out of his stomach). The doctors have to change the tube every couple of weeks to allow his stomach to heal closed around the smaller tube. The actual changing of the tube seems like a fairly simple process. Wesley didn't seem to have trouble with that part, but as the hole was healing closed, it bothered him. I am not sure if the problem was that the healing felt itchy to him or the fact that the tube has a balloon at the end in his stomach. About 5 days after the last tube change, Wesley was waking up every 2-3 hours in the night. Now this might not seem like a big deal to you, the reader, but to us it was. Wesley has slept through the night, every night since we got him, so this was totally unexpected. The waking up in the night got better after a couple of days and stoppped completely a week ago. Now we get the tube changed tomorrow and we'll see if the waking up starts again. (Damon and I are praying it won't - for our sake and his. It makes for a rough day when all three of us are tired)

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When the tube is replaced tomorrow, the doctor is also going to do a test to see how much esophagus Wesley has. We were told in Ukraine that he has very little, so any more than a little would be wonderful! The more he has, the easier the surgery to repair (at least theoretically).

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We have been working with Wesley on taking food and drink by mouth. This is usually a tough issue with children who have never taken food by mouth due to feedings coming exclusively through the g-tube. We take a sippy cup with us when we go out to dinner and encourage him to drink when we take a drink. He is catching on, but it isn't something he loves to do yet. I did figure out the other night that he does like chocolate milk, so we're trying that.

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I have also started to feed him baby food. I won't lie - feeding by mouth is not my favorite thing to do. I know how incredibly important it is for Wes to learn how to swallow and chew, but the mess is, well, it is a mess. We had sweet potatoes the other day, and so far that seems to be his favorite. He DOES NOT like peas, but really, who can blame him?? I feed him about 1.5 ounces of baby food a day, and the feeding process takes at least 30 minutes. I am glad that even after the esophagus surgery Wesley will have the feeding tube until he can take enough food by mouth. If the feedings don't get any faster, then we will be feeding him about 15 hours a day! I am confident though that once he is able to eat a wider variety of foods that he will enjoy eating more. I am excited though that he has taken to eating fairly easily! I have to attribute that to how laid-back Wesley is.

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Wesley was at almost 21 pounds last week, so he has gained four pounds since we got him! Four pounds wouldn't be noticeable on most people, but so far he has gained 20% of his body weight and grown one inch. I am excited to see what he weighs tomorrow. You can tell that he is gaining weight as he has fat cheeks and a few fat rolls. He has also "lost" his knuckles due to the fat in his little hands. I have a lot more trouble carrying him than I did just a few weeks ago. That is due to the weight gain and the "squirminess" of a 20 month-old who wants to run around.

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Please pray for the tube change tomorrow for Wesley. Please also pray for my Grandpa as he is having surgery on Friday for stomach cancer. We are praying the doctor can remove the cancer laproscopically (the only a few small incisions) and with no other issues. I look forward to posting the good results!!

Thursday, October 16, 2008

update


the dog is still taller than he is, but Wes is catching up
(Wesley has gotten 1" taller in four weeks and gained almost 4 pounds!)

trying to coax Duke out from under the bed


it is so much fun playing with a salad spinner as Mom cleaned out the pantry

wrapped up in his pig bath towel from Liz (SO ADORABLE!)
with the pumpkin from Grandma and Grandpa that weighs more than he does


we were trying to teach him "touchdown" but he would only put his hands behind his head (we're still working on it...)



ranch dressing on his mouth at dinner

playing with the curtain in the doctor's office




I LOVED this winter hat, but Damon thought it was too girly (I might have to go back and get it anyway)
brushing his own teeth!!
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We have been home almost five weeks at this point, and we are all doing well. We met with the surgeon yesterday at Cincinnati Children's that will be doing the surgery on Wesley's esophagus. We talked about the various ways the surgery can be done depending on how much esophagus Wes actually has (we will find that out next week). If he has a fair amount, then the surgeon can stretch the ends to meet and connect it there. If he doesn't have much esophagus (the most likely scenario), then Wesley's stomach can be brought up and connected to the bottom of the esophagus he does have. If that won't work, then part of his intestine can be used to form the esophagus. The doctor prefers not to use the intestine, but he can if needed.

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We were encouraged after meeting with the doctor. He said that he hopes that by the time Wesley turns three that he will be functioning like a typical three year-old child. I was happy to hear that, as I wasn't sure how long the whole reconstruction process and therapy would take. Surgery will likely be after the first of the year, which gives us a chance to get through the holidays before focusing on surgery.

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We have started attempting "mock feedings" with Wesley. Progress is slow, but it is getting better. I had to fight Wes before to brush his teeth, but now he is brushing on his own and not fighting when I brush them. I know that doesn't sound like much, but it is to us!!!
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I have to go work on thank you notes. I am sending out the notes, but I want to thank everyone here that has given us a gift! We appreciate your generosity and love all the presents. Wesley is going to be the best-dressed child for the next few years!!!


Sunday, October 5, 2008

Congratulations, Scott!

This post is to say congratulations to my brother Scott who completed his first triathlon today! Scott canoed 6 miles, ran 6 miles, and biked 18 miles in 3 hours 24 minutes. Wesley already told me how much he looks forward to seeing him in the triathlon next year. We also want to wish Scott's girlfriend Emily luck as she runs in a marathon next weekend!!



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