Merry Christmas Eve

10 Things that helped make our Christmas Eve a great one:

1.) The Hoeh family...20 years ago they lost a son near Christmas in the hospital. On Christmas Day, someone brought them a meal at the hospital. To remember and honor that kindness, their extended family now prepares and serves Christmas Eve dinner at the Cincinnati Ronald McDonald House, and even makes sure Santa shows up at the end of the meal. What an example of service!

2.) D.J. (we've previously requested prayer for him and his foster mom Terry) was able to move from hospital to RMH today...awe

some!

3.) Leander (a 2 1/2 year old guest at the RMH) was able to have his 1st successful bronch ever yesterday, and the doctors discovered he has vocal cords (they've never been able to confirm this before)...and his parents' smiles afterward.

4.) Family around the country...wish we could be with you on Christmas, and we hope you have a wonderful day!

5.) Prayerful support of many people.

6.) Referrals of 2 beautiful Rwandan children which came earlier than expected but right in line with God's timing.

7.) The opportunity to be at an outstanding hospital with an outstanding medical staff.

8.) A smooth day for Josiah.

9.) Graeter's Ice Cream

10.) Luke 2

Merry Christmas to all, and to all a good night!

An overdue update

Sorry I haven't updated in some time, but it's been a busy week. Still having some issues with Josiah's recovery...you can check his CaringBridge website for more on that. A few things have happened on the adoption front in the past couple of weeks. First, we formally accepted our referral. Second, we were sent a few additional pictures of the kids...we can't wait until we pass court and are able to share them (and other information) online with you! Third, our Power of Attorney (POA) is working on getting our court date, so hopefully we'll know about that this week.

Two quick stories showing how God is continuing to bring our family together from around the globe:

This past week during one of his medical appointments, the nurse asked Josiah if he has any brothers and sisters. Without hesitating, he said "I have 2 brothers and 1 sister." Of course, he also added that his sister's name is "Adopt" (as this is what he's insisted we'll call her for many months now)...

Got an email from our POA this morning, and in it she said: "...and they know they are siblings now."

Silas and I fly to Cincinnati tomorrow so we can spend Christmas week with Shelly and Josiah. We're eager to have our family (at least 4 of us) reunited for the first time in almost a month...can't wait until our family (all 6 of us) is united for the first time ever!

Hanging at the RMH and a Night at the Zoo

Someone called tonight, mentioned he hadn't seen an update in a while, and wanted to make sure everything was still o.k. Sorry about our break from providing updates...w

e've just been adjusting to (and enjoying) life outside the hospital. Until his next bronch on Wednesday (12/16) we're not sure how many updates we'll post because there's not a lot going on respective to his health situation.

However, we're pleased to say we were able to move him to RMH yesterday, and he's enjoying the change of scenery. He sleeps in our room with us, eats meals with us, and loves to wander around the RMH (which is a pretty big place). More good news is that he did very well during the night last night. Before we were discharged, the nurse practitioner on the airway unit emphasized that we are to contact them if he shows any signs of breathing difficulty, reiterating that the reason they want us across the street at RMH is because it's not uncommon for kids to have to be re-admitted to the hospital. However, so far he's doing great, so we're hopeful our next trip to the hospital will be on Wednesday for his bronch.

I (Art) will fly back to Glorieta on Saturday night, as caring for Josiah at RMH is not as physically tiring as doing so in the hospital. In addition, Shelly's mom will arrive in the next day or two to assist Shelly and give Josiah another familiar face to see. The rest of our schedule the next few weeks is on hold for now...Silas and I are supposed to fly to SC for a family wedding on 12/17 (the day Josiah and Shelly were originally scheduled to fly back to NM), but as the doctors now feel it's likely Josiah will be here at least through Christmas, it's more likely Silas and I will fly back to Cincinnati so we can spend Christmas together as a family. That decision will be made after the bronch on Wednesday.

Tonight the Ronald McDonald House took a van shuttle to the Cincinnati Zoo (about 1/2 a mile away) so we could see the Christmas lights at the zoo. Josiah's been so excited to attend so I bundled him up and we had a father-son night out. The lights were wonderful and abundant, and I mostly just followed Josiah around everywhere he wanted to go. His favorite thing was a display featuring two white tiger puppets who cracked jokes, sang funny songs (Josiah liked the one about Santa's underwear), and interacted with the crowd. We went back to see this four times. He and I had a blast spending time together. Before leaving, as we were heading down the hall to the lobby, I had the feeling I'd forgoten something. I went back to the room and asked Shelly if we needed to take anything, as for the past 5 years going out with Josiah has required a large backpack (suction machine, emergency spare trach, HMEs, etc.) and usually oxygen. She said "No, you don't need to take anything." It's hard to explain how surreal and precious that moment was...if you've ever seen us out and about, you know that we typically don't travel lightly, but tonight Josiah and I just grabbed our coats/hats/gloves and headed out like most fathers and sons do. It was an incredible blessing and a memory I'll carry for a long time.

People around the country are "praying for pink", and we remain grateful for the support of so many. Since we haven't provided an adoption update in a week or so, he's a brief update: Our Power of Attorney (POA) in Rwanda is working to obtain our Act of Adoption for each child. Once this document is obtained, our court date will be set (hopefully in the next couple of weeks). Then, we (Shelly, Silas, and I--Josiah will remain in the U.S.) anticipate travelling to Rwanda to pick up the two newest Sneads sometime in January or possibly early February. As you might imagine, things are very busy right now, but also very exciting. Thanks for checking on us!

12/9 Bronch Update

An update regarding Josiah's bronch this morning...s

ome good news, some not-so-good news.

Josiah was especially anxious about his bronch and being put to sleep this morning...we and the medical staff agree he's probably just getting more and more tired of being here and having things done to him.

The bronch was relatively quick. For those of you who don't know, a bronch gives his doctors an opporunity to check on the condition of his airway.

First, the good news. His doctors still think it will be o.k. for Josiah to leave the hospital tomorrow and move to RMH with Shelly and me. RMH is literally across the street from our hospital, and they want us to stay close. His discharge tomorrow will also depend somewhat on how today and tonight go, but we expect to move to RMH tomorrow. For Josiah, it will be a welcome change of scenery, new activities/surroundings/opportunities to play...for us it will mean more consistent rest. Good news all the way around.

The not-so-good news: His airway does not look as good as we were hoping. We've included a photo taken this morning (we have others but this one seems to best show the important issue)...basically, the white tissue on the top and bottom of the picture (in reality, where his anterior and posterior grafts were done in his airway) represent the grafts done during his surgery 2 weeks ago. The pink tissue is mucosa, which is the lining which produces mucous. What we were hoping to see was very little (if any) white tissue, and mostly (or all) pink tissue, which would mean the airway is healing well. However, as you can see, there's still a lot of white tissue. They said this helps explain the breathing issues he had at end of last week, and just means the healing is not progressing as quickly as we'd hoped. Hopefully we haven't grossed anyone out, but we're including the picture to give you an idea of specifically what you can pray for: We want the pink tissue to cover/replace the white tissue!
The doctors also advised us that it's very unlikely Josiah will go home on the 17th as was the original plan. He will have his next bronch on Wed., 12/16 as originally scheduled, but it likely will not be his last before we leave Cincinnati. The doctors said we should expect to continue to be here and have weekly bronchs so they can monitor his airway's healing. Whether that means an extra week or possibly longer remains to be seen...however, at this point it appears likely we'll spend Christmas in Cincinnati. But, as one of his nurses pointed out this morning, Santa Claus visits Cincinnati, too!

We're still processing this news that wasn't quite what we'd hoped and there's some degree of disappointment, but we're o.k. We are excited about moving Josiah to RMH, and we have full confidence in his medical team here at Cincinnati Children's Hospital (may your children never have serious health issues, but if they do it's hard to imagine a better place for them to come than this hospital...it's earned "5 stars" from Snead's Hospital Touring Service). In addition, the longer we are here the more reminders we see of how much for which we have to be thankful, as other families and children face circumstances which appear less hopeful than ours. We're waiting to see how God works out the details for our upcoming travel to Rwanda to pick up our 2 new additions, as it looks like that will occur in January...but He already knows how that will work out.

Thanks for checking, and remember: Think (and pray) Pink!!!

Familiar Faces, Bronch Tomorrow

An eventful day for Josiah (in a good way)...Shelly is already asleep at RMH so I (Art) will try to fill you in before I pull out the chair and try to get some rest.

We had visits from two familiar and friendly faces today. First, Mr. Byron Hill drove up from Nashville last night and visited us this morning. He brought two puzzles (Toy Story and Spiderman) which Josiah loved...he finished the Toy Story one late this morning. We hung out in Josiah's room for a while and then showed him the play room (one of Josiah's favorite places on Earth). Then, Ms. Melanie Calceterra (a friend of Dad's from both high school and college) came to visit. She lives north of Cincinnati with her family now, and she met us for lunch one day during our September trip here. Her kids (who couldn't come due to visitation restrictions at the hospital) sent Josiah several gifts, including a Webkin dog that Josiah named "Snow" and a "Create Your Own Popup Book" set with stickers, markers, and two blank pop-up books...we're planning to save one for Silas since he loves to write books so much. A picture of Byron working the puzzle with Josiah is included...unfortunately, Dad forgot to take the camera and get of picture during Melanie's visit, and Mommy was asleep so she couldn't help us remember. We also learned Josiah has a long way to go with some of his manners...he was so anxious to get back to the playroom that he basically waved goodbye to Melanie for most of 20 minutes...ugh!

On Josiah's 2nd trip to the play room, several members of the Cincinnati hockey team were visiting. We don't think Josiah knows anything about hockey and he certainly didn't know who these guys were, but they thought he was so cute and ended up playing Wii with him for a while.

A nurse came in to take Josiah's temperature just now and reminded me of two funny-but-not-really-so-funny stories we've not shared with most of you yet. We've always been careful with Josiah's health, especially during flu/cold season, but we've been especially vigilant the past few months before his surgery...keeping him away from large groups of kids and sick individuals, lots of hand washing and hand sanitizer, etc. Story 1: The day before his surgery, we were at the Cincinnati Children's Museum (a huge former train station that's an amazing place, if you ever get the chance to go)...I took him in the restroom...usually he stands to the side and waits for me...when I looked over at him this time, he was playing with the urinal mint in the urinal next to me...disgusting, right? Not as bad as: Story 2: When they check vitals, the nurses use a digital thermometer...it has two probes, a blue one and a red one. Each is covered with a hard plastic sleeve that is disposed of after each use. The other day a nurse set it on his bed while she did something else...when I looked over, curious Josiah had pulled one of the probes out and was putting it in his mouth...was it the blue (oral) one? No. Was it the red (non-oral...use your imagination) one that the nurses always say not to touch? Yep. The nurse quickly reminded us they always throw away used plastic sleeves as soon as their used and that they wash the probes...we know, but still disgusting. Moral of this story: Even though we were as wise and careful as possible in protecting him from germs leading up to this surgery, God made sure Josiah stayed healthy, as there's no telling how many disgusting things he's done that we never saw or knew about...after all, he is a 5-year old boy...

Changing to a much more pleasant subject, tomorrow morning is Josiah's next bronch. All along the doctors have said we'll gain much more information from this one than the one last week, as Josiah's airway has had more time to heal. It's at 9:45AM EST and should be pretty quick...the doctors are expecting to see good things, and their hope is to discharge us to RMH on Thursday. Although bronch's are usually outpatient procedures for us, due to only 2 weeks since his surgery and the fact that his issues last week started the night following his bronch, they want to keep him in the hospital under medical supervision for at least 1 more night. Hopefully we'll get to move to RMH on Thursday and stay there until after next bronch on Wednesday, 12/16 (Shelly's birthday, by the way). As for me, my return home originally scheduled for Thursday, 12/11 will likely get postponed to Friday or Saturday.

FYI, Silas flew from FL to Albuquerque today...due to a large snowstorm in Colorado, his Papa B can't pick him up until tomorrow, so he's staying with his Aunt Laura, Uncle Fred, and cousins in ABQ tonight. His Nana said he had a great time in FL but was ready for his next adventure today...what a great kid! We are so happy he's having a great time, but we miss him like crazy...I'm looking forward to our reunion at the ABQ airport early the morning of 12/17 when he and I fly to a family wedding in SC. This is the same day Shelly and Josiah will fly from Cincy back home...we'll all be reunited as a family on 12/22, a full month since our departures on 11/23. We ready to be together again!

We'll update after the bronch tomorrow! Thanks for checking on us and praying for us!

Another great day...and we're thanful

Last night was a great night for Josiah...he actually slept until about 7:30 this morning, which is sleeping in for him (he's been getting up 6 AM-ish). He was moved from PICU back to the airway section, which means he was able to make trips to the play room today. On his trip tonight he got to play Medical Bingo (ex: "N-rubber gloves") and won a cool blue 18-wheel truck (see attached picture).

His bronch will be Wednesday morning as originally planned. Even if it goes great (and they expect it to), the earliest he'll be let out of the hospital is Thursday, especially since it was after the last bronch that he started having some issues...they don't think it was necessarily bronch-related, but they want to keep us under watch that night. They've also advised us to stay at Ronald McDonald house over the next week rather than with some friends since RMH is so much closer to the hospital.

Tomorrow Silas flies from FL to NM where Papa B will pick him up and take him to Colorado for the next week or so. He and I will be reunited early the morning of the 17th when we meet at the ABQ airport to fly to SC for a family wedding...I am looking forward to seeing him so much!

A Big Turnaround (yes, that's a pun with the picture below)

Josiah's turnaround from yesterday at noon until today has been awesome. A great night last night, and a great day today. Although we've not been told anything official, we believe they'll move us out of PICU and back to the airway section of this floor if he has another good night tonight (and we're off to a great start so far). Josiah's attitude was so good today...lot

s of smiles, patience when we told him (multiple times) he couldn't go to the playroom today (not allowed for PICU patients), enjoyed movies, and playing in bed with trains/trucks, ...he is currently in one of his favorite sleeping positions (see included picture): lying on his chest, legs crossed Indian style with his butt sticking straight into the air to greet any medical staff who enter the room...even when he's asleep, he's clearly making his feelings known...

Got a visit from a former player (Melinda R.) today...was great to see her and really appreciated her coming by...nice to see a familiar face! She's in physical therapy school at UK and doing very well.

Hope to find out tomorrow morning that they're moving us out of PICU and whether they'll move up his next bronch or keep scheduled on Wednesday AM as originally planned. We're still hoping to be out of the hospital as early as Wed. (although Josiah and Shelly will have to stay in Cincy area another week) so we can take him to the Christmas lights program at the zoo Wednesday night...that would be an awesome way to spend his 1st night out of the hospital...we'll see!

Please forgive the short update, but it's late! Hopefully Shelly's already asleep, and I hope to drift off soon as well. Thanks for checking on us!

Update

So many of you are following and praying that I (Art) want to give an update before getting some sleep. Last night was somewhat of a contradiction: (1) Josiah actually slept more than he has the past few nights vs. (2) his retracting while sleeping continues to worsen, so he woke up exhausted this morning simply because he had to work so hard to breathe. His doctors continue to be more concerned and are trying to control the symptoms while figuring out exactly what is going on. They are unsure why there is such a large discrepancy between Josiah during the day (no need for monitors, breathes well, etc.) and Josiah and night (who struggles so mightily). Certainly the fact that his airway/muscles relax and "go to mush" when he rests is contributing, but they're wondering if there's more than that. However, in a sense this discrepancy is a good sign, because if his airway were collapsing it's likely he'd be struggling all of the time.

Many of you know his surgeon prescribed 1 round of steroids yesterday morning to "speed up" the shrinking of the nodules in his airway in order to determine if they're the cause of his issues at night. Steroids prevent inflammation, which on the one hand is good; however, healing involves some inflammation, and they prefer not to use steroids because they don't want to slow down the healing of the grafts and the mucosa which covers them. At 1:45AM this morning, the chief resident made the decision to try another round of steroids in light of Josiah's increased breathing struggles. Josiah also took two doses of Adovan (sp?) to help him relax, and twice had to be woken from a deep sleep to receive breathing treatments (he hates these) as the doctors/nurses tried to find ways to help him out.

At 6 AM this morning the ENT team met and decided to do a bedside scope (the camera down his nose procedure with Josiah awake...yes, he hates it, as some of you probably remember from his previous trips to Albuquerque and Cincinnati). There is a good bit of adema (swelling) and the vocal cords are moving somewhat, but they didn't find a clear answer for the issues he's having at night.

They will watch him closely today, although we expect he'll have another great day as long as he's awake. In terms of what could be next: The doctors do not want to put a tube back in his airway if at all possible. There are several other things they can try before we reach that point, but most of them require Josiah going back to the PICU. We'll monitor him closely today and, if his struggles begin again this evening, he will likely be moved back to PICU. In addition, they are considering moving up his next bronch (originally scheduled for Wed., 12/9) so they can try to better figure out what's going on.

Although better sleep for Josiah last night, he continues to get more worn out overall as the breathing struggles accumulate. Thankfully, Shelly got pretty good sleep last night, but we are concerned (trying not to be worried). As each of you parents knows, it's difficult to see one of your children struggle. After his 2nd breathing treatment last night, Josiah looked at me with tears in his eyes and said, "But Daddy, we already did that TWO times tonight" and "Are we going to have to do that EVERY night?" Then, as they prepared to do the bedside scope, he tried to be brave but cried and said "Please don't do this." I know these things need to happen and are best for him, but still it is hard because it is hard for him.

God is good, even in hard times. When I returned to our room at RMH today, I looked at today's note provided by a group of our friends. It's from the Sefziks, family friends who moved to Seattle several months back. One passage stood out in particular in the portion of Psalm 121 they included: "Your Protector will not slumber. Indeed, the Protector of Israel does not slumber or sleep. The Lord protects you; the Lord is a shelter right by your side." Whether we rest or are awake, He watches us more carefully and with greater care than the medical staff who closely monitored Josiah last night, and His love for this boy is even greater than our own (as hard as that is to imagine). As you pray for Josiah today, please ask God to help us remember this truth, even in the hard times...and may you remember it in your hard times as well.

Great pic of Josiah

Another good day today...and thus far, another rough night tonight. Josiah is retracting and we're still trying options to help him not have to work so hard to breathe.

Did want to post this incredible picture of him, though...probably the best so far without his trach.

A speed bump

We're asking for your prayers this morning. Last night was very rough, with several visits from doctors, lots of retracting (heavy heaving in his abdomen when he has to work so hard to breathe), alarms, another IV insertion, etc. Shelly got about 90 minutes of sleep, so she's back at RMH this morning trying to get rest.

Josiah is great when he's awake, so much so that they will allow him to be off the monitor, go to playroom, walk around, etc. But when he tries to sleep/relax (whether a nap or at night), the issues begin. His doctors (and we) are hopeful this is not a result of his airway partially collapsing...

it looked so good 2 days ago when they removed the tube, but it's since that point that he's had problems. They hope the issues are being caused by some inflammed nodules they found on Wednesday which are partially blocking the airway when his muscles relax as he tries to rest. These nodules are supposed to shrink on their own over the next few days, but the doctors have decided to speed that up by giving him steroids. They don't like to give steroids at this point if possible, but feel the risk is outweighed by the need to determine if this is what's causing the problem.

We are concerned but also fully aware that God knows what's going on and is in control. Hopefully the nodules are causing the issues and the steroids will take care of the nodules and not cause other issues. This is the 1st speedbump thus far in his recovery which has gone so well (and for that we are very thankful). The dose of steroids just finished, and we'll see what happens from here. Thank you for your support and prayers!

A day that's run the gamut

A late night at the end of a long day, so I (Art) will likely use this post on CaringBridg

e and SneAdventure:

What a great day. 1st, Josiah's bronch went well and his doctors said the airway is looking very good, so good that they removed the tube from his airway and did not replace it with a smaller tube. So, Josiah's airway is now tubeless. His doctors said the key is making it for 24 hours this way and we're approx. 14 hours of the way there, so things are looking good. However, they also again cautioned us that we are not yet out of the woods, and they'll know much more about how things are looking at the bronch on the 9th.

When Josiah was waking up after the procedure, it was pretty traumatic for him. We think it was mostly due to the new sensation of breathing without a trach and without the tube in his airway...also, it's likely his throat was sore. It took a long time to calm him down. Finally, I started readinng books to him. Then, I asked him what he wanted to do, expecting him to point at something, and he said "Puzzle." Immediately his eyes lit up and he got so excited he began waving his arms and kicking his legs, as he realized he could talk again. The rest of the day he was a different person...lots of talking, eating (Jello, 2 slices of cheese, some ham, some chocolate pudding) under the watchful eye of a feeding specialist, more walking, lots of smiling. I've included a picture of him eating with this post.

About his talking, it is VERY faint, like a whisper although he's not whispering...more difficult to understand him, but I think that's mostly because it's much less volume than before his surgery, but that could be due to sore airway, recent removal of the tube that's been there for a week, etc. We're hoping to hear the volume increase in the days ahead.

I am with him tonight, and thus far it's been pretty rough. Josiah cannot seem to get comfortable, is having to work hard to breathe, is receiving some supplemental oxygen, is crying some, and sounds very congested. They've already done a breathing treatment to open things up and hopefully that will help. This is the most fitful rest I've seen for him since we've been here. If you're still awake and read this tonight (a blessing of us being on the east coast), please pray for his body to calm down so he can get quality rest tonight. Thanks.

We will probably be moved from PICU to a special section for airway patients tomorrow morning. After that, it's more waiting until the bronch next Wednesday.

On the adoption front, we received another photo of the kids today along with some additional health information. The little girl has the most incredible smile in this photo...wish we could post now, but will have to wait until we pass court. Be assured we will share the photos and other information as soon as we can!

Josiah Walking Better Today

Short post today...only got 3 hours of sleep last night and none today, so my brain is fried. Our highlight was Josiah walking on two occasions, and his balance and strength were much better than yesterday. On his 2nd trip, he walked two laps around his pod in the PICU. His nurse worked with the Child Life Specialist to make a trophy for him that says "#1 Walker, Josiah Snead". He loved it!