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Jesus said, "I have come so they can have real and eternal life, more and better life than they ever dreamed of." (John 10:10)

Wednesday, September 30, 2009

Cincinnati Update #4

Here's an update Shelly wrote for Josiah's Caring Bridge website late today. If you haven't visited the site, check it out at
It's got lots of great pictures (including some from our Cincinnati trip) as well as a place you can write Josiah messages!

Here's Shelly's update from today...it has some GREAT NEWS in it:

WOW! What a whirlwind this week has been! We flew in on Sunday, and drove to West Chester to stay with our wonderful new friends, Rick and Sharon Schatz, who hosted us (and all of Josiah's equipment!) for our stay here. Thank you thank you thank you! (and thanks, Scooter, for the connection).

Monday was a pretty easy day - we spent the morning at a place called "EnterTRAINment", an enormous hit with our train enthusiast. Then off to the hospital to meet with anesthesia to get ready for Wed's procedure. This took a while, but we made it to the zoo for a short time and Josiah had a great time! Then it was off to dinner and back to the Schatz home for bed.

Tuesday was a rough, long day, but a very informative and hope-giving one. We arrived at the hospital at 9:30, Josiah was given anesthesia (which made him VERY upset, since he didn't need it for his last scan). At 10:30 he had a hi-resolution chest scan. After lunch at the cafeteria here, we headed up to see the ENT/speech pathologists at the voice clinic. Josiah was fussy and freaked out most of the time there (a very uncomfortable procedure for him - probe placed through his nose to get a good look at his vocal cords while breathing and talking). He also did some speech testing with a microphone/computer that we've never had done before. Results of the tests showed that, indeed, his vocal cords were not really moving, but we found out for the first time that this was not "the end of the world", as it is treatable with surgery/therapy. However, Josiah may have voice issues (a light, breathy voice) as a result, and we'll do some voice therapy via skype and other in-home therapies to work on this, even before the surgery. Then we saw the pulmonologist, who gave us a LOT of valuable information that I won't burden you with here, but suffice it to say, we were very hopeful going into Wednesday morning's bronch. Finally, we saw the Gastrointerologist, who basically said he didn't think Josiah was refluxing...the shortest appointment of the week so far! When we were FINALLY done (around 5:45pm!), we headed to the Great American Ball Park for a Cincinnati Reds game, which daddy splurged and got us 7th row tickets to (...which happened to be a few rows over and up from Pete Rose, who was also at the game..).

Wednesday, the day we had been anxiously waiting for! Finally it was time for the triple procedure - bronchoscopy, laryngoscopy, endoscopy, and maybe a few other oscopies, I lost count! They also inserted an impedence probe through Josiah's nose all the way down to his tummy and left it in (will be taken out after 24 hours, tomorrow morning) to accurately measure reflux posssibilities. Josiah was pretty fussy (as he went to bed pretty late and got up pretty early....and was very tired of procedures at this point), but finally after an 8:00 arrival time, he was put "out" of his misery at 10:00 and taken to the OR where 4 doctors "did their thang". (sorry, I'm getting tired too....!) After an hour, they came out and spoke to us and here is the nutshell:

THERE'S A REALISTIC POSSIBILITY WE'RE GETTING HIS TRACH OUT SOON!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!(do I sound a little excited?!?!?!??!?!?!?!?!?!??!?!?!?!?!?!?!?!?)As long as all the tests run this week and biopsies/washes that were done don't produce any red flags, i.e. signaling other issues that might need to be treated first. It could even happen as soon as 6 weeks or so....but I've learned to be ready for things to change at any moment, as some problems wait and rear their heads AFTER we've gotten all excited, but anyway, here's the tentative plan. He will have a single-stage reconstruction of his upper airway, with two grafts put in - one in the trachea area which has somewhat collapsed, and one between the arytenoids which are attached to the vocal cords, and are preventing them from moving due to scarring. The trach will be removed at this point! When that surgery is scheduled, he will be in the hospital here for 2 weeks and then must stay in the area one more week. Then, 2-4 weeks later we come back to Cincinnati for checking up on, then again a few weeks later, etc, etc....its a lengthy process to make sure everything is okay, but well worth it. The doctor in charge of this reconstuction is actually the one who INVENTED it!!!!! And has been, along with his wonderful team of physicians, improving upon it for a while. Needless to say, we have been very impressed with the doctors here.

I know many of you are tired of reading (if in fact you've made it this far), but I have to tell a quick story of our flight here. As many of you know, Josiah is quite the "charmer", loves people as soon as he meets them, etc. So as we were boarding the plane, we happened to be ahead of the pilot who Josiah had a lengthy conversation with. When we were readay for take-off and the pilot got on to welcome everyone, he said "and I'd especially like to welcome Josiah on the flight - he's 4 years old, and a fine young man." Josiah was pretty excited. Throughout the flight, the flight attendant fell in love with him, and half-way through it came back and said, "can I get him some pringles or some M & M's for free?" (they're usually $3 each). So I leaned over to Josiah and asked if he'd like some chips, to which he replied, "Yes, I'll take some chips and salsa please". (spoken like a true New Mexican?!) The attendant brought him back chips, M &M's and a deck of Delta playing cards....

Thanks to ALL who have prayed for us on this trip. Unfortunately there is one more unpleasant procedure tomorrow morning (the nasal probe looking at his vocal cords again, but this time he has to eat something with it in there so they can evaluate his swallowing). Thank you to Mamoo and Papa B who have been taking amazing care of Silas in Colorado this week! We love you all! Shelly, Art and Josiah

Tuesday, September 29, 2009

Update From Cincinnati #3

Today was a long day...not sure how much detail I can provide before heading to bed, but we'll give it a shot.

We arrived at hospital at 9:15AM. First up was a cat scan on Josiah's chest. We had told him he wouldn't have to get anesthesia (he calls it "anastasia") since he didn't have to on his last cat scan; however, once we arrived we were informed he would have to have it since they needed to carefully control his breathing during the procedure. Even though this doesn't hurt at all, as it was a change to what he was expecting it was a bit upsetting to Josiah. I do have to say that Shelly and I were able to be with him when they put him to sleep, and we both thought it was pretty funny how quickly it happened. The cat scan went well and once he woke up he was full of energy and excited (most kids are sluggish and grumpy), so we took a break for lunch and called Silas on the phone.

After lunch we saw several doctors and specialists, including ENT (ear-nose-throat), pulmonologist, and GI. Overall Josiah did well today, but there was a period of about an hour that was pretty rough when he learned he'd have a scope today (a camera probe is put down his nose and he has to talk so they can view his vocal cords, which is a key reason why we're here). Josiah's vocal cords are moving only minimally, which is a cause for concern relative to airway reconstruction/trach removal. He went through this procedure once before in ABQ and remembers it vividly...although I don't think it's particularly painful, I'm sure it's strange and involves discomfort, and he HATES it. Once he learned he had to have the scope, he was so anxious that it affected some of the other tests that really weren't so bad because he was dreading the scope. They recorded him with a microphone at a computer making sounds with his voice (how high pitch he could go, how low pitch, how strong of a voice without screaming, etc.)...he did o.k. with this but we could tell he was starting to get tired. When they tried to put a mask around his nose and mouth for another recording test, he melted down mentally and physically so much that they stopped the test. They said with 4-year olds it's 50-50 as to whether they make it through that test...suffice to say that Josiah is very strongly in the "No" 50%.

After calming him down, it was time for the scope. The procedure lasted less time than the one in ABQ and overall Josiah did much better during it, but it was still pretty traumatic for him. Fortunately he recovers very quickly after such experiences. They had to use a very small probe to go down his nose, which means they couldn't see quite as well as they could've with the larger probe. However, the ENT doctor felt he got good information, including some things the doctors will investigate further during his procedures tomorrow.

After the scope, we still had 2 more doctors to see. Fortunately, most of those appointments consisted of answering questions and discussing rather than procedures, so he did o.k.

All of the doctors we've seen have spent much time with us, answered our questions as best they could (which has for the most part been very good as they truly are very experienced with Josiah's issues), and impressed us with their knowledge. We'll know more tomorrow when we meet with them after his procedures, and we're still processing much of what they told us. However, whereas our ABQ doctors felt there was a possibility his vocal chord damage could prevent us from reconstructing his airway and removing his trach, the tone of our discussions today seemed to focus more on simply being careful to determine an airway reconstruction/trach removal plan that minimizes increased risk of aspiration, negative and permanent impact on his voice (could always sound "breathy"), etc. (i.e., finding a way to fix the most significant problem without making other problems worse).

A tiring day, a day of massive amounts of information we're still processing, but a good day in that we're speaking with experts and gaining information, which is why we brought Josiah to Cincinnati. Also, we love the team approach utilized by the different departments here, which was something we also appreciated when we were at Chapel Hill. Also, we ended the day at a Reds game, sitting in the 7th row between home plate and the dugout (approx. 30 feet from Pete Rose himself!). We left after 5 innings so Josiah could get to bed, Shelly could pack, and I could catch up on work, but it was a great experience.

We have an early morning tomorrow with a bronchoscopy, endoscopy, and then an overnight Ph test. His procedures should be over by late morning (followed by additional meetings with his specialists), but then he'll have a Ph probe tube down his nose the rest of the day and night so they can explore possible reflux issues more thoroughly than past tests have made possible. Josiah and Shelly will actually spend tomorrow night in the hospital. On Thursday he'll have another scope (he must eat during this one) called a FEES, then we'll hopefully have time to meet a friend of mine from college before boarding a plane and heading back to NM.

We know many people are praying for us this week and we value your prayers. THANK YOU!

Monday, September 28, 2009

Update from Cincinnati

Today was a good day. Sharon fixed a great breakfast of eggs, fruit, and bacon, and then we left for an hour or so at Enter-Train-Ment, which is supposedly the world's largest model train exhibit. The level of detail was amazing, as was the size of the buildings, landscapes, etc. Mixed in was a great deal of interesting information about the history of trains in America. Shelly and I wondered if Josiah would merely want to play with the Thomas trains in the kids play area, but he primarily walked around and looked at the model train exhibits (that should tell you how intersting it was to him). It was something Silas would also have enjoyed (even though he's started saying "I used to like trains when I was younger").

Afterward we drove to Children's Hospital to go thru registration and meet with an anesthesiologist about Wednesday's procedures. Our first impressions of the hospital? Decorated with an obvious emphasis on making kids feel welcome, very efficient (almost no time spent in the waiting room), and every person we met had a smile and was pleasant: from the women in registration to the nurses to people we passed in the hall to the security guard in the lobby to the guy who collected our lunch payment in the food court to EVERYONE. It was great. The anesthesiologist did run a little bit late, but the nurse notified us early and suggested we use the time to go get lunch, so we spent very little wasted time in the examination room. Overall, we're very impressed. With just one primary appointment, today was much easier than the next 3 days will be, but it was a great start.

Afterward we walked to the Cincinnati Zoo. We only had 1 hour and 15 minutes before it closed, but there were very few people there and so we were able to move around quickly and see a lot of animals. Josiah said his favorite was the camel, which was a bit surprising since it stayed mostly hidden back in a cave and we could hardly see it. Shelly liked the white lions best, and I liked the tiger.

After the zoo we followed the recommendation of Josiah's therapist Julie and ate BBQ at Montgomery's on the Ohio River. A bit pricey but very good ribs and brisket (and grilled cheese for Josiah, of course).

Returned to the Schatz home tonight where I've been catching up on work for the past 3 hours or so...our fiscal year ends on 9/30, so in some ways this was not a great week for me to be away from work. However, we're grateful to be here!

Tomorrow will be more appointments and then (if the weather allows) a Reds game! Josiah has shown a real interest in baseball lately and Sharon gave him a Reds hat to wear (he has it on constantly in their home)...of course, with his short attention span it's quite likely he'll look at us in the bottom of the 1st inning and ask, "Can we go home now?"

Thanks to all of you who are praying for us this week!

Update from Cincinnati

Smooth travel yesterday...we all had early starts and Shelly's/Josiah's plane was delayed by about 30 minutes arriving to Cincy, but overall a good travel day. We arrived at the Schatz home around 5:30 local time. What wonderful people Rick and Sharon are! They've opened their home to us, made recommendations concerning the local scene (this morning we're taking Josiah to a train exhibit called "Enter-Train-Ment", and are feeding us well. What great hosts!

Today should be an easy day with only 1 appointment at the hospital, followed by an afternoon at the zoo. We're looking forward to that!

Thursday, September 17, 2009

Families in Rwanda

Currently there are 3 families in Rwanda picking up their children. I've been monitoring their progress (and at times, lack of progress) on blogs and a Yahoo group I'm now a part of. It has been a rollercoaster ride of emotions for them, complete with numerous dead-ends followed by numerous ways God has worked to get them past those dead-ends. They have their children and are near the end of their time in Africa, but are still facing some obstacles before they can bring their children home.
We've heard that there are always unexpected challenges when involved in international adoption...even more so in Africa...even more so with a program that is as new as Rwanda's (when the 3 families currently in Rwanda return, that will make only 9 families total who have adopted from Rwanda with our agency). Although we've already experienced some of that, there's no doubt there will be more as we travel. Even though we haven't traveled yet, it's easy to understand that the unexpected issues for which we can't plan ahead will test my faith and patience, as I'm an analytical thinker who usually operates with the belief that sufficient planning can prevent almost any unexpected issues...how wrong that is with adoption from Rwanda AND WITH LIFE IN GENERAL. Perhaps God will use this experience to (again) teach that lesson to me. Hopefully I'll be a quick learner, but based on my track record that doesn't seem incredibly likely.
Now that we're past the paper-chasing stage (when we were more actively involved in the adoption process on an almost daily basis), there are times it feels like actually getting our kids seems so far away. And yet we hope for it daily and pray for our girls...we don't know anything about them regarding ages, names, backgrounds, etc. as we haven't been matched yet, and yet we feel in our hearts as though we're already the parents of 4! We talk about our "baby sisters" with Silas and Josiah, and it's amazing to hear the boys pray for them. Following what's happening with the families currently in Rwanda picking up their children brings such hope for the day we will be there.

Sunday, September 13, 2009

A Great Weekend

What a wonderful weekend we've had. Saturday morning both boys had soccer games. It's Silas' 4th season, and he seemed to "get it" much more than he has in the past. He actually scored the 1st goal of the season, he used skills like dribbling, he played hard the entire game, and he was a great sport! He had so much fun.

It was Josiah's 1st soccer game. Even when on the field, he mostly watched what was going on, didn't mind at all when it was his time to take a break and sit on the sideline, asked "How much longer" about 5 minutes after the game BEGAN, etc. When I asked him if he'd kick one for me, he said "I will, I promise", ran over and kicked the ball, and then resumed his stance of standing and watching (as if he'd kept his word and could now go back to just watching). He also picked a flower and gave it to his coach. What a difference between 4 yrs. old and 7 yrs. old, but it was great to see him in his soccer uniform and run around some.

Today we hiked up Canoncito Canyon. We did the same hike last fall, but this time was much different. Silas and I took Josiah with us as we scaled the steep rocks up the side of the canyon (last year Josiah sat at the bottom with his mom). Just like camping last weekend, Josiah loved being able to go with the "big boys" on this adventure.

Two weeks from today we'll travel to Cincinnati, and we continue to hope and pray for answers to what are the options for Josiah. Please join us in these prayers as God brings us to your mind. Thanks!

Tuesday, September 8, 2009

Cincinnati Plans in Motion

Our insurance company made travel plans for Shelly and Josiah today, and Art is looking (and hoping) to get the same flights at a reasonable cost. We'll travel to Cincinnati on Sunday, 9/27 and return on Thursday, October 1 (Josiah has a morning appointment this day but we should be done and to the Cincinnati airport by mid-afternoon). Silas will spend the week with Mamoo and Papa B in Colorado, and he's really looking forward to that! While in Cincinnati, we're hoping to take Josiah to the zoo (it's supposed to be a great one) and possibly even to the final Cincinnati Reds game of the season (they're playing the Cardinals).

We received such a blessing from our church last week. Scooter Franks (head of our church's prayer ministry) came to our home to anoint Josiah with oil and pray for our trip. Since he and his wife used to live in Cincinnati, they've been so helpful as we've planned our trip (it looks like we'll be staying at the home of some friends of theirs while we're there). During our meeting, Scooter gave us a check from the church and a couple of families to help us with our trip expenses...he began crying when he gave it to us as he exclaimed "This is what the body of Christ is all about!" He has such a heart for prayer and the fellowship of believers, and we're so thankful for the gift, Scooter's visit to our home and assistance in planning our trip, and our church family.

No news on the adoption front yet...we continue to pray for our "baby sisters" at meals and other times, and we often find ourselves thinking about what they're doing. A family whose blog we've been following is in Rwanda picking up their 2 boys right now, and we're eager for the day when that's what we're doing. In the meantime, we're trying to prepare for life with 6 Sneads...look out world! Shelly is searching for just the right bedroom theme (African, of course), Art is trying to sell his truck and get another truck with 6 seat belts, the boys are busy messing up (and cleaning up) their sisters' room...

Silas and Josiah begin soccer practice this week. It will be Silas' 4th season and Josiah's 1st...we're not exactly sure how Josiah will do but he wants to try and his team will be coached by a man in our church, so we're giving it a shot. Art took Silas and Josiah (and oxygen tanks) camping last Friday night, and it meant so much to Josiah that he was able to be included in the "Snead Men's Outing" and his 1st campout. Dad didn't get much sleep, but it was worth it.

We're entering fall at Glorieta, which is probably the most beautiful time of year in this wonderful place where we live. Come visit!