HUGE NEWS ON THE ADOPTION FRONT

WE RECEIVED OUR REFERRAL!!!

Two days ago we received our approval letter (that was dated in October 09)...typically it takes 2-3 months between receiving approval letter and receiving referrals, but this morning I received an email from the Ministry in Rwanda with our referral info. As I type this entry, I'm looking at pictures of two beautiful children who will hopefully be part of our family very soon. I'll do my best to describe the experience, but there's no way I can describe in full detail the joy we've experienced this morning.

We requested two children, 1 girl and 1 boy or girl. Due to some revisions we had to make on our paperwork, we weren't sure exactly what our referral would be, but we suspected 2 girls. However, we are THRILLED with the girl and boy God is providing for us. We have received very little information so far, just a photo of each and their current names. NOTE: There are still steps in this process that must occur before the adoption is finalized...one important step is that we must "pass court", which is when our in-country legal representative will go to a Rwandan court to try to obtain a court ruling that the children are officially part of our family. Until we pass court, the children are not ours, and in order to protect them we are not allowed to post personal information about them in any public forum, so you won't see photos, official names, etc. appearing in our blog until that happens (which we anticipate will occur in January...but keep in mind that's just a guess, as we continue to learn the timeline can adjust drastically). In the days ahead, we will receive additional information (medical records, birthdates, etc.) for review. From what we can tell, the girl appears to be 3-4 and the boy appears to be 4-5...they are AMAZING!

We showed the photos to Josiah this morning, and he flashed a thumbs up and was excited. Then we emailed them to Nana and called Silas to give him the great news as he opened the email and saw the photos...he is so pumped up.

So much going on in our lives right now...and so much good for which we are thankful!

A Very Cool Moment

Today was mostly another looooong day in the hospital. On several occasions Josiah's tolerance level for being stuck in bed reached a point where he was miserable and didn't really want to do anything to make himself feel better. However, there were also some cool moments:

1.) To spice up his wagon rides today, Shelly created a scavenger hunt for him. She taped 6 envelopes along the PICU corridor walls with his name on them. As we rolled him around, he had to watch for the envelopes and find them. When he did, we'd open them and read a card/note to him, and there was a small prize (crayons, lollypop, puzzle, etc.) in each. He enjoyed it and Shelly is already planning something more elaborate for tomorrow.

2.) Tonight after dinner I asked Josiah if he wanted to do a puzzle...previously he's said no but this time his eyes lit up somewhat and he nodded yes. Using a hospital rolling table arranged over his bed, we opened a 100-piece puzzle and began to work. I could see his mind working as he positioned the pieces, and he flashed repeated thumbs up as we worked together and made progress. I've included a picture of him working the puzzle.

3.) Probably the coolest moment happened tonight when we held up a mirror so he could see his neck without a trach for the first time. He stared at the mirror for a few seconds, then shot his arm up in the air with a big thumbs up. I think it was a strange sight for him, but one that he's excited about. I've also included a picture Shelly took while this was happening.

Josiah is getting better at communicating with us (or maybe we're just getting better at understanding). As you probably know, he can't say anything due to the tube through his nose that goes down through his vocal chords. The sign language he learned several years ago (a necessity because he couldn't talk at all then) has come in very handy, and he's also developed a system of pointing, thumbs up, etc. to help us know what he needs. For several days we've noticed occasions when he fidgets and rubs his legs together...usually happens at night and keeps him awake. We've previously asked him if his legs hurt, and he shook his head (no). About 4:15AM this morning I thought to ask if his legs itched, and he nodded yes. I sat beside him and rubbed my hands up and down his legs, and within 3 minutes he was fast asleep. His nurse brought us some lotion, and we've applied it several times today to his legs...it has helped his comfort level a great deal. We later found out that some of his medicine is probably drying out his skin.

Before closing, here's a specific prayer request...it is very important that the tube in Josiah's nose remain in place until it's time for them to take it out. He has done a great job leaving it alone...however, at night when he's back on the vent (and the tube is connected to other tubing) and he moves, it starts to pull on his nose tube. Last night there were 3-4 times the respiratory therapist had to push it back in...Josiah does not enjoy this at all. At one point she even wondered if we needed to re-tape and re-position it, which would require him being sedated and paralyzed while they do it so that he doesn't move at all. In the end, she ended up adding a single piece of tape to help stabilize it. It's done very well today, but please pray that the nose tube stays stable tonight while he sleeps (and wiggles). Only three more days until his bronch on Wednesday, and if all is well at that point they'll downsize to a smaller tube.

Pics of Silas in FL

As you can see, Silas is having a great time with his FL cousins...

More progress for Josiah...and big news on the adoption front!

Josiah continues to make progress. He no longer has a bandage on his neck, he is completely off of oxygen, and the drain tube from his neck was removed this morning. On the flip side, he's getting more and more fidgety and it's getting more difficult to keep him entertained.

Today was filled with more books, movies, listening to Silas read a book over the phone, listening to Aunt Chabba read a book over the phone, listening for a 2nd time to a story recorded by Glorieta intern Mindy, watching Dad put together two Lego Christmas ornaments, 2 wagon rides, computer games, ...and it was still a challenge. He was more grumpy today and showed even more frustration/fear than usual when medical staff had to do things with him. Without a doubt, his least favorite thing is being suctioned through his nose tube. Second least favorite thing is probably having new IVs installed, although he actually did pretty well with the one tonight. Although there are fewer tubes attached to him than at one time, the IV sites must periodically be changed.

Shelly and I continue to tag-team our time with him (particularly the nights), although all 3 of us are frequently in the room during the day. Typically whoever stays overnight with him doesn't get much sleep, and then returns to the RMH for a nap the next morning. We are both getting to exercise each day, which helps relieve stress and gives us an opportunity to get out of the hospital.

Summary: We continue to make progress, pray that the grafts will work, and look forward to his bronch on Wednesday and possible down-sizing of his nose tube at that point.

Probably the best news of the day: We received an email from our Power of Attorney in Rwanda with an attachment of our letter of approval from the Rwanda Ministry! This was the next step for which we were waiting in the adoption process, and now we'll be waiting for the actual referrals. Timeline for others ahead has typically been 1-3 months to receive the referral...not sure when it will happen for us, but we're sure looking forward to it!

Thanks for checking in on us and your continued prayer support!

Post-Op Day 2

Josiah continues to improve today. Last night he slept until about 3:45 AM and was then wide awake as the medical staff worked with him. He is fully off the vent now, just receiving a small amount of humidified oxygen. He foot IV is gone (still has one in his hand), his catheter is gone (didn't watch that removal), the drain tube in his side is gone (the one in his neck will likely be removed tomorrow),...all of these are good signs of his recovery. He certainly isn't acting normal yet, but we see glimpses of his personality emerging. No smiles (we think it hurts him), but he's actually reverted to the sign language he learned years ago before he could talk in order to communicate with us. He's eaten some crushed ice, taken two rides today around the PICU in a wagon (see attached pic), quacked at a nurse when she showed him her toy duck, given thumbs up several times,...he's getting there. Still in some pain and discomfort...has just now (5PM) drifted off for a little nap after having been awake since 3:45AM this morning.

Josiah with Eyes Open

Shelly took this photo tonight while Mamoo read a book over the cell phone to Josiah...he's drifting off to sleep now and will hopefully get great rest tonight!

Happy Thanksgiving

Hoping that all of you who read this have enjoyed a wonderful Thanksgiving with family and friends. Although we're spending Thanksgiving in the hospital, we have much for which to be thankful.

Josiah has been awake much of the day. He usually cries when a staff member enters the room, and always shakes his head no when asked if he needs medicine. His attending doc today said that he probably is in pain, but just doesn't want anyone coming near him, so they're giving him Tylenol every 4 hours. We've read lots of books and he's watched two movies, mainly trying to keep him comfortable and peaceful.

Good news - he is breathing so well on his own that they are slowly taking him off of the ventilator. The large tube must stay in his nose to keep the airway open and to be there in case it collapses, so they don't have to intubate through the airway sites they just repaired. They have turned him down to 24% (I think 21% oxygen is considered "room air"), and he stil has something going on with the ventilator that provides a push to open his lungs. They will slowly wean him off of this and if he can tolerate it, this will allow him to be able to sit up more, etc. (although right now he gets upset if we even have to adjust his pillows to change his position every few hours).

He continues to be a real trooper. While in obvious discomfort and somewhat frustrated because he can't speak, he is remaining calm, compliant and controlled. He just gave me a quick 1st smile of the day, but other than that he's just looking around most of the time. His level of calm is great because the more upset he gets over things, the more movement and the more possibility of jarring something in his airway that is still healing. We have even removed the restraint from his right hand, and so far he hasn't touched his tube.

Palomino, an upscale restaurant in Cincinnati, catered Thanksgiving lunch in two seatings at RMH today. Shelly attended noon and I attended 2 PM. Very good food and so kind of these folks to volunteer not only the food but also the time away from their families for part of today. The hospital itself is like a ghost town today, but the staff that are serving are cheerful and so professional. I remarked to someone yesterday that our interaction with Cincinnati Children's Hospital on the Sept. trip and now is probably the best customer service experience I've had in a long, long time. The hospital's motto is "Change the Outcome"...what an awesome mission.

Josiah is now again napping, which is great for him...his little body is so worn out. In closing, I want to share another Josiah story from this morning. Josiah hasn't seen a picture of himself without the trach and his neck is still bandaged, so this morning I wondered if he realizes the trach is gone. I asked him, "Josiah, do you know that your trach is gone and that you're breathing thru your mouth and nose just like Silas does?" He looked somewhat surprised and shook his head "No." I replied, "That's pretty cool, isn't it?", and he nodded yes. I'm sure it will be an even bigger deal to him when he feels better, which should continue to happen over the days ahead.

Hope you've had as great a Thanksgiving as we have!

A Great Day

Josiah did great today. We could tell from the moment we woke him that he was a bit anxious about the surgery, but he really handled it all very well. It lasted approximately 4 hours, and now we are in a PICU room for the next week for his recovery. His neck and right side (where they took the rib) are bandaged, but it's still an amazing site to see him without his trach. The doctors said "It went as well as it could've gone", but they also cautiously reminded us that 1 in 30 patients who have this surgery must be re-trached because the grafts don't "take" (ie., no blood circulation, etc.). We should have a good idea of the probability of success for Josiah in 2 weeks when he has his 2nd of two scheduled bronchoscopies. So, Josiah's recovery the next few weeks is as important as his surgery was today. The plan is to wake him in the next day or two and see if we can keep him calm as he recovers over the next week. There are benefits to him being conscious during his recovery, but there's also a risk with kids of his age that agitation could cause movement that will harm the grafts put in today. As God brings us to your minds, please pray for peace and patience for all three of us (Josiah, Shelly, and Art) in the weeks ahead.

As for Josiah, he's worn out as you can imagine. Throughout the afternoon he's floated in and out of consciousness...it started with him barely opening his eyes every 30 minutes or so and mouthing "Ow" (he can't talk because the tube in his nose goes down thru his vocal chords). Now when he opens his still-droopy eyes he seems more alert, and he'll try to nod or shake his head to answer some of our questions. So far we’ve been able to pacify him back to sleep, but tomorrow will most likely be a lot rougher on him once all of the anesthesia wears off. I've included a picture of him from this afternoon post-surgery so you can get an idea of how he looks.

Two Josiah stories I'll share before closing:

We're always careful with his health (especially during winter), but have been even more vigilant over the past 2 months, limiting his exposure to sick people, constantly applying sanitizer to his hands, etc. Yesterday while in the Cincinnati Children's Museum he and I went to the men's room. I looked over and saw him playing with the mint in the urinal...yep, the day before his surgery. Just more evidence that despite our best efforts, it was God who kept Josiah (and the rest of our family) illness-free in preparation for today.

The 2nd story involves Josiah's actions this morning as the doctors and nurses prepared him for surgery. He began to cry, kept saying "I don't want to do this", and even put his hands over his trach so they couldn't have access to it. Although trying to be brave, he was afraid, and his reaction was to clutch and protect the target of the doctors' efforts to help him. Whether due to fear, confusion, or a combination of the two, he clung to what was familiar even though the best course of action was to just let it go and move forward with the experts' plans for him. While trying to calm him down, I briefly wondered how often I postpone or miss out on God's best for me because I'm clinging to what is familiar but no longer part of His plan. I'm so thankful for His constant patience with me!

On the Eve

Great day with Josiah today. We went to the hospital for a short visit and lunch, and then headed to Cincinnati Children's Museum (free tix and free shuttle provided by the hospital). We'd considered the zoo but we went there on our trip in Sept. and it was a bit rainy today. A huge, old train station houses several museums (Natural History, Children's Museum, etc.) here...was neat to see how this structure has been transformed from a busy transportation hub many years ago to a museum today. We had a great time with Josiah, and he enjoyed the water activities exhibit, an exhibit called Energy in Motion, and, of course, the Thomas the Tank Engine play table they had.

Tonight we had dinner and now he's in bed. We're hoping to all get a good night's rest, as tomorrow will be a long (although good) day and the last 2 nights have been rough...short sleep 2 nights ago as we had to leave so early for the airport, and last night none of us got much good sleep because Josiah was congested (so lots of suctioning, patting his back, getting him back to sleep, alarms, etc.). The great news is that he doesn't seem to be getting sick, so we're not sure what happened last night.

We also received a schedule for tomorrow...all times are Eastern. We'll arrive at hospital at 7:15AM, surgery is at 9:15 AM and scheduled for 5 hours. During the surgery, Shelly will probably knit and I'll probably work/read in between all the praying and waiting. We're not sure what will unfold after the surgery (how quickly they'll wake him up, if one of us can stay in his ICU room with him, etc.), although we do expect him to be in some pain/discomfort. We'll try to provide updates when we can.

We're in Cincinnati

For those of you that keep up with www.sneadventure.blogspot.com (our relatively new family blog) and www.caringbridge.org/visit/josiahsnead (Josiah's current CaringBridge site), it's likely Shelly will keep CaringBridge updated and I (Art) will keep the blog updated while we're here, so there will often be different information on both. However, there will also likely be occasions when we simply copy one to the other. As it's been a long day and it's late, tonight is one of those occasions. By the way, if you're a glutton for punishment (or just want to learn more details about Josiah's health issues leading to this point), you can check out his original CaringBridge site at http://www.caringbridge.org/nc/josiahclete/...this one was started when he was still in the NICU after birth 5 years ago and was his primary site before we migrated to the new CaringBridge format a year or so ago.

We left Glorieta at 5 AM this morning for the ABQ airport. Silas flew to Florida with his Nana (and is having a blast with his FL cousins already), while the rest of us headed to Cincinnati (via Atlanta). Something unexpected and cool: One of our church's staff members (Kari Reeves, Director of Christian Spirituality and Art) was on our 1st flight, and she prayed for Josiah once we reached ATL. Also during our layover, we received a call from the Cincinnati Ronald McDonald House. They informed us a room had opened up for us to use...this is a great blessing because the hotel where we were booked was approximately 10 minutes away, whereas the RMH is right across the street from Cincinnati Children's Hospital. Also, the RMH has a library, activity rooms, other children and families to meet, and a great dinner prepared and served each night by community volunteers...truly an awesome ministry to families of children with serious health issues. We previously stayed in the one in Chapel Hill, NC, when Josiah was born, but he doesn't remember that. This one is huge...supposedly the 4th larges of all RMHs with 78 rooms. It's pretty much full but it's so big it doesn't seem crowded. After settling in and getting some equipment exchanged (there was some confusion with our equipment order), we enjoyed homemade tacos. Then Josiah and I headed to the library to read a myriad of books. Now he and Shelly are asleep while I'm getting some work done.

Josiah's surgery is not until Wednesday...we traveled 2 days early because winter weather has begun and it's Thanksgiving travel week, and we didn't want to take a chance we'd get delayed and not be in Cincinnati by Wednesday morning. Tomorrow we'll likely drop by the hospital for a brief visit, and then possibly head to the zoo to enjoy some time outside before several weeks of inside confinement for the Toaster. If weather isn't good, we'll possibly do a museum instead. Although we understand what the surgery will entail and accomplish, we're still a bit in the dark on details. It should last 5 hours, but we don't know if they'll wake him up afterward or wait a couple days. He will spend 1 week in ICU and will likely be sore (both in his airway and his side, due to the rib cartilage they'll use in reconstructing his airway), so we'll be reading books, doing puzzles, watching videos,...anything we can do to ease his discomfort and keep him from fidgeting and damaging what the surgeon's have accomplished...will be tough for a 5-year old boy, so please pray for patience and peace (for Josiah and us!).

We know there are many who have prayed over the past five years for this day, and many who will be praying on Wednesday and the upcoming weeks of recovery. We treasure your prayers, not simply because it means you're thinking of us, but because you are communicating with Almighty God on our son's behalf. Yesterday the Glorieta community had a special prayer time for our family at a Thanksgiving celebration on our campus. They also presented us with 3 identical packages of notes (1 for Shelly/Josiah, 1 for me, and 1 for Silas), so our family could each read the same scripture and words of encouragement even while we're at times separated during the next few weeks. One note for each day, each contributed by various members of the Glorieta community...we read our 1st from Mary Kay while on the plane today (Josiah actually remembered and asked about it). Such support means a great deal. One additional item I'll mention: Josiah loves it when people sign the Guestbook on his CaringBridge site or post comments to him on our blog...during our last trip to Cincinnati, we read them to him at least daily while in the hospital, and we plan to do the same again this time. If you get a chance, write something for him on one of these sites and we'll make sure he gets it.

Shelly and me? We're excited. Although there's much about Wednesday's experience we can't predict, we're looking forward to it with great anticipation. This day has been so far off for so long, and we've been so busy preparing for it the past few weeks, the impact of it hasn't hit us yet. I think at some point on Wednesday the emotion is going to overwhelm us as we get squarely reminded of what God has accomplished in Josiah's life over the past 5 years, and what He's going to accomplish that day. I'm not fully prepared for it, but I'm ready for it to happen.

Ready to Go To Cincy

Below is the post Shelly put on www.caringbridge.org/visit/josiahsnead earlier today...we'll try to keep both that site and this blog updated while we're gone, and will likely sometimes copy one entry from another:

We're off to see the "wizard(s)"!..............

We'll be leaving early tomorrow morning to catch our plane to Cinncinati, Ohio for Josiah's airway reconstruction! YIPEE!!!!!!

His procedures are as follows: this Wed., Nov. 25 (probably starting around 9:00am). This is the official surgery which is estimated to take around 5 hours. He will most likely be sedated for a time afterward (a day or 2....we're not really sure) and on a ventilator. Josiah doesn't really have a clue who rough the next couple of weeks are going to be....so pray for his recovery and emotions as well.

Then he'll be in ICU until Dec. 2, when they'll do a scope/bronchoscopy (while he's under anesthesia) to check things out. If everything goes well, he'll then be put in a regular peds room in the hospital, with another follow-up scope on Dec. 9. Finally, he'll be released from the hospital where we'll stay with some friends for the following week until his last bronch on Dec. 16. If everything is in order, we'll come home on Dec. 17.

Shelly's mom flew in last night and will be flying Silas to Florida where he will spend to incredible weeks with her, and all his cousins, uncles and aunt on my side of the family...Nana will then fly him to his other grandmother's where he'll have another incredible week at the "Butler Farm" and spend time with Papa B, Mamoo and other friends and family.

Lastly, Art and Silas will fly to South Carolina for cousin Corrie's wedding, along with a tirp to see Grandpapa and Grandma Linda. As you can see, Silas is DEFINITELY going to have an amazing holiday season, for which we are VERY thankful. (I asked him yesterday how much he was going to think about me, and he answered very kindly but honestly, "well, probably not much because I'll be pretty busy".....but that, too is a blessing, isn't it?

Well, we sure appreciate your thoughts prayers and journal entries (we read them all to Josiah and he appreciates them too!) We'll try to update pretty regularly starting Wednesday evening......Its all in His good hands...

Sara Groves Rwanda Video

If you haven't seen this yet, it's worth watching...powerful images and song by Christian artist Sara Groves, who wrote this after returning from a journey to Rwanda. Looking forward to the day when we reach the Land of A Thousand Hills on our journey to Rwanda and see the faces of our girls...

Referral Day for Several Adoptive Families

When I checked my email this morning, I saw something I've been looking for the past few weeks: Referrals began coming in from Rwanda for a group of adoptive families. I can only imagine the incredible joy those families are experiencing as they look at the pictures of the Rwandan children who will soon become part of their families. I am happy for them, and I'm also eager for the day that we receive our referrals. To put names and faces with "our little sisters in Rwanda", which is how we typically refer to the girls when we're praying for them, talking about them while seated at our dinner table, or when Silas and Josiah go into "our little sisters' room" to play...that will be amazing.

In the meantime we continue to learn all we can about the wonderful country of Rwanda via books, films, blogs, people who've visited...we've even downloaded mp3 files to help us better learn the Kinyarwandan language (still have a ways to go in this area, but I'm trying). It's amazing what God is doing in this small but special African country...for just a glimpse, check out the documentary "As We Forgive" and/or the book of the same name (both, by the way, written/created by Furman University alums...go Paladins!).

In the meantime, only 2 weeks until Josiah's surgery! We're doing what we can to keep him free from sickness while still allowing him to be a 5-year old boy...his birthday party last Saturday was a lot of fun. Tonight as we prepared to change his trach (typically a weekly event), Shelly told him this was one of the last trach changes he'd ever have...I honestly hadn't thought of it in those terms before. While hosting the interns for dinner last night, we showed them pictures of Josiah as a baby and a diaper like the ones he wore in the NICU (it's tiny, but it used to swallow him)...how far he has come, and how faithful God has shown Himself to be along the way. Only 2 more weeks!

23 days and counting, Adoption Update

23 days until Josiah's surgery, and only 21 days until we leave for Cincinnati. We originally planned to travel to Cincy the day before the surgery, but due to potential winter weather and Thanksgiving week, we'll travel on Monday to give ourselves an extra day to get to Cincy on time...don't want to take the chance of not being in Cincy the morning of the 25th!

Participated in another conference call for Rwanda adoption families last Thursday...as eager as we are to get further in this process (which for us means receiving a letter of non-objection from the Ministry), there are several families who are waiting to receive referral information on the children who will be joining their families...that's got to be exciting but tough at the same time, especially since the 2-month deadline originally given to them has passed.

Summary of info from the call:

1.) Whereas we'd previously been told to expect a wait of 3-6 months between the time our dossier arrived in Rwanda (DTR = Dossier to Rwanda) and receipt of non-objection (ie., approval) letter, it now looks like at least 5 months. Also, the Rwanda program coordinator repeatedly emphasized that timelines/deadlines are treated much differently in Africa than in America...whereas we tend to look at them as set in stone, in African culture they're viewed in a much "looser" manner...reminds me of the following exchange in "Pirates of the Caribbean":

ELIZABETH: Wait! You must return me to shore! According to the rules of the Order of the Brethen --

BARBOSSA: First. Your return to shore was not part of our negotiations nor our agreement, and so I 'must' do nothing. Secondly: you must be a pirate for the pirate's code to apply. And you're not. And thirdly ... the code is more what you'd call guidelines than actual rules. Welcome aboard the Black Pearl, Miss Turner.

Yes, that was a bit random, but hopefully you see the connection...in international adoption, "deadlines" are "more what you'd call guidelines than actual rules."

2.) It's likely the adoption process will continue to slow down before it speeds up again. The increased delays are mostly a result of:
a.) Lack of manpower (only 1 individual in the Ministry currently tasked with most international adoption matters)
b.) Technical issues (sending/receiving a fax and scanning documents not as commonplace as in America)
c.) Rwandan Ministry's recent (within the last few months) decision to take a greater role in the referral process
d.) Increased number of families wishing to adopt from Rwanda...our agency is actually limiting the number of dossiers it sends to Rwanda in order to avoid overloading a system which is not yet ready to handle a large number of adoptions.

3.) In spite of the fact that this Rwanda adoption process is slowing down, adoption from Rwanda is still quicker than most other countries.

So, whereas we were originally hoping (back when we started in October 2008) to receive our children by Christmas 2009, and during the past few months we were hoping to travel to Rwanda in February-ish, it now seems more likely we will travel late spring/early summer 2010.