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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, October 28, 2009

They're likely behind these doors


Was surfing several blogs from families adopting from Rwanda tonight (o.k., the term most people use is "blog-stalking") and came across the following picture. These are the doors to the Home of Hope Orphanage in Kigali, Rwanda. This is the orphanage the Ministry has been using (and is expected to continue to use) when referring children for adoption. Since our dossier is in Rwanda awaiting approval, it's quite likely that our two girls are currently living behind these doors. Wow...that hit me like a load of bricks tonight. As excited (and blessed) as we are about Josiah's upcoming surgery, we're still longing for the day our family expands by two precious girls from Rwanda. Although our family has each other, this longing can still feel lonely sometimes and reminds me of the following words from a David Wilcox song: "When I get lonely...that's only a sign...some room is empty...that room is bare by design...when I feel hollow...that's just my proof that there's more....for me to follow...that's what the lonely is for." The longing that we feel is often placed in our hearts as a gift from the Lord...while it's not really a pleasant feeling, it reminds us there's something else out there...I think John Eldredge once wrote (here's my paraphrase) that our disappointments and frustrations with this world remind and point us to the fact that we're made for something better, something that is yet to come. So it's currently a struggle between impatience with and thankfulness for the longing.

Sunday, October 25, 2009

Missing the family

Shelly and the boys went to visit Mamoo and Papa B in Colorado yesterday, and they won't return until Tuesday. I wish I could've joined them, but we're hosting the Baptist State Convention of New Mexico starting Monday, and I needed to be around for this event. It was strange attending church without them this morning, and I fielded lots of "Where is your family?" inquiries while there.
However, I did get some shopping done...not something I typically do much of, but I bought a king-size electric blanket for our bed (Shelly is excited) as well as Josiah's birthday present...got to keep the latter a secret, but it's something the entire family is going to enjoy and hopefully something he can take to Cincinnati to help pass the time while he's in the hospital. His birthday is November 7th.
I know my family is having a great time but I sure do miss them. Am trying to get a lot done while they're gone!

Friday, October 23, 2009

Countdown to November 25th

We have a date for Josiah's surgery: November 25th! Not only is this 1 month before Christmas, it's also the day before Thanksgiving...we'll have so much to be thankful for! Shelly, Josiah and I will travel to Cincinnati and stay for several weeks (depending on how typical Josiah's recovery is). The Toaster (Josiah's nickname) has been telling everyone he's getting his trach out...we're all very excited!

There's a chance we could get bumped up if a cancellation occurs, so we're living life on "standby" in case that happens. We're praying our family (especially Josiah) stays healthy between now and his surgery so we're not postponed. Flu season is certainly impacting our area, and we're trying to be careful with him while still letting him live a 5-year old's life. That's right, Josiah will turn 5 on November 7th. He's come so far in the past 5 years and we're so blessed he's in our family!

2nd grade is going well for Silas. He's becoming a great reader...I'm amazed at how smooth and quickly he reads out loud, and he loves to sit by himself on the couch and read chapter books. He's continued to do great in soccer (only 2 more games).

Shelly and the boys head to Mamoo and Papa B's home in Colorado tomorrow for a few days away. They'll check on all the chickens and yaks, and bring home the packaged half-steer so we can enjoy some great beef over the months ahead.

The next Rwanda adoption conference call is next Thursday (the 29th). All that's going on with Josiah has made the adoption waiting a little bit easier, but there are still so many times we as a family talk and wonder about the 2 sisters who'll be joining us (hopefully soon)!

The cold weather has arrived at Glorieta! After a beautiful fall with vibrantly colored leaves of many colors, the cold weather hit Wednesday with our 1st snowfall of the year. It didn't stick, but we can still see quite a bit on some of the mountaintops in our area.

Wednesday, October 14, 2009

Cleared by Children's Hospital

Last Friday Josiah had an ECG in Albuquerque. On Monday we received word the results looked "normal", although the medical team in Cincinnati would have to review and interpret the results when they met on Wednesday. Yesterday Shelly worked relentlessly to make sure the team in Cincinnati received the ECG report in time to review it today. We also received a copy, which stated "other than some dilation of the PA system, no other signs of PAH."

Today we prayed for wisdom for the Cincinnati team as they reviewed Josiah's case. Although we did not expect to hear from them until tomorrow or Friday, we received a phone call today from Dr. Cotin's nurse, Janet. She is the individual who told us last week that Josiah wasn't yet ready to be scheduled for surgery because the PAH issue needed to be investigated. Her news today was great. The Cincy team feels very good about the ECG results, and they have sent our file to the scheduling department, meaning we'll be able to proceed with his airway reconstruction and trach removal.

We're still not sure why things were put on hold last week, but we're very grateful all issues have been investigated and we've been cleared to proceed. Janet told us to contact the scheduling dept. by Friday and check to see where they are. It took several months to schedule our 1st trip to Cincy, but we're hoping things will go much more quickly this time since they've already dealt with our insurance company once (also, we think it's a good sign that they initially told us to come so quickly last week). Shelly made sure Janet knows we're very flexible in making a trip to Cincinnati at a moment's notice in case they have any more cancellations. Janet replied they've had several cancellations (this is what happened last week when they initially called us to come) due to flu season. We're not hoping anyone else gets sick, but we'd certainly like to go as soon as possible!

Speaking of the flu, I read on an adoption blog today that the Minister and her family (in Rwanda) have the swine flu, which is slowing down the adoption process for multiple families at this time. Hopefully she and her family will recover fully and quickly.

Wednesday, October 7, 2009

Change in Plans

This morning we received a schedule from Children's Hospital listing the procedures Josiah would have over the next 3 weeks. Later, we received a phone call from Dr. Cotin's nurse...when she heard we'd been contacted by someone from Children's Hospital to schedule the surgery on Monday, she was shocked and basically said that no one should've contacted us. For several hours we waited while she discussed with other doctors (Dr. Cotin wasn't in today), and then she called back with the news that they are not ready to proceed with Josiah's surgery at this point. Apparently there was some confusion between departments there and we shouldn't have been called to arrange an appointment yet.

Here's an explanation that Shelly wrote on www.caringbridge.org/visit/josiahsnead:
"WE ARE NOT GOING TO OHIO THIS WEEK. And I am officially OFF the roller coaster ride! We're not exactly sure why the surgeon and his scheduler jumped the gun, but the other people on Josiah's team would like to get rid on one "red flag" before prodeeding with surgery.The red flag was this: Hemosiderins were found in the washes done by the pulmonologist during the bronchoscopy last week. This could be a normal thing, as 50% of preemies have these. BUT, in light of Josiah's oxygen requirements, they want to make sure it's not signs of pulmonary hypertension (caused by possible hemmoraging in the lungs). The O2 needs could very well be explained by altitude, but its better to get everything checked out and treated BEFORE this major surgery occurs. " We're still not perfectly clear on what this means, and I think the pulmonary hypertension could cause possible hemorrhaging in the lungs (not vice-versa), so we're again waiting. Josiah will have an echocardiogram (ECG) on Friday morning in Albuquerque and the results will be sent to Cincinnati. Janet, Dr. Cotin's nurse, thinks it will be normal and said they'll then be able to schedule us...if it's not, it's an issue that will have to be resolved before they do Josiah's surgery, as we don't want to risk the hemorrhaging. When Shelly asked what it would take to resolve the issue if it exists, Janet didn't provide a direct answer, so we're not sure.

So now we're praying for a normal ECG on Friday, continued wisdom for his doctors and nurses, and genuine trust in God's timing. Several friends have commented along the lines of "God's timing is perfect" after hearing the news today...it's one thing to hear it, say it myself, and even know that it's true...but sometimes it's a much more difficult thing to BELIEVE it. Not sure if that makes sense or suggests a lack of faith, it's just sometimes a struggle (at least for me) to LIVE it. However, my struggle in that area doesn't change God's faithfulness, and that's comforting. Pastor Martin actually spoke last Sunday about how Abram was a friend of God and yet even he expressed doubts when God told him he would be the father of many nations (and how that would take place). One of his points was that we can be honest with God when it comes to doubts, frustrations, etc. He made us, knows us, and loves us, so it wouldn't make sense to do otherwise. I just thought of that sermon now as I'm writing this...I wish I'd remembered it earlier today, but at least it's an unexpected blessing from writing this blog (which I really didn't feel like doing tonight).

One cool thing about today: So many of you expressed your excitement and joy for us based on last night's news, and we appreciate you sharing in our excitement and joy. We all got a glimpse of what it will be like, and that was pretty amazing.

Tuesday, October 6, 2009

GREAT NEWS!

Well, those of you who have visited Josiah's Caring Bridge site (www.caringbridge.org/visit/josiahsnead) or my Facebook page tonight are already aware, but I had to try to put it into words on our blog tonight:

JOSIAH GETS HIS TRACH OUT ON MONDAY! Shelly received a call from Cincinnati today and was told Dr. Cotin (who invented the airway reconstructive surgery he will perform on Josiah) wants to know if we can be there on Monday (as in October 12, as in 6 days from today) for the surgery. I was in a meeting at work, but Shelly called and said she had to speak with me right away. Her sense of urgency caused concern among the individuals trying to find me, and when I called I heard her crying on the phone. Then she told me the news and I was stunned, absolutely overwhelmed. That's how I can best describe what our family is feeling tonight: we are overwhelmed in an exceedingly positive way, acutely aware of how blessed we are. This is amazing! Tonight we went to dinner at Red Lobster (Josiah's favorite non-fast-food restaurant, even though he goes for the mac-n-cheese and broccoli rather than the seafood), and several times I caught myself just staring at him, thinking that one week from today he will no longer have his trach, and listening to Silas repeatedly say how excited he is for Josiah.

I hate that I was not home when Shelly got the news...when she got off the phone she told Silas "Your brother is getting his trach out on Monday!" She said Silas got so excited he began crying tears of joy, said "This is what we've been praying for!", and ran around the house for 45 minutes (she finally sent him outside to get some exercise). As some of you know, at least 95% of the times Silas has prayed during the past 4 1/2 years (whether before meals, or at night before bed, or during the day), he asks God to help his brother get his trach out...there have been numerous times Shelly and I have been convicted that we've lacked the consistency in petitioning God for this request that our 7-year old son has had. I wish I could've seen the joy in his face and heard him say "This is what we've been praying for!" when he first heard the news today. Just another example of the huge heart Silas has for others and a glimpse of how his faith is growing.

As for Josiah, Shelly said he initially cried when he heard "surgery" but then Silas said "Josiah, when you get your trach out you'll be able to go swimming with me!" and then Josiah started getting excited about it all. Several times over the past year Josiah has said he doesn't want to get his trach out...we think it's because the only time his trach is out is when we're changing it, and he struggles to breathe during those times which is scary for him. However, he's continued to grow more excited about all the things he'll be able to do when he gets his trach out, from swimming to spending the night at people's houses to no more suctioning and trach changes, etc.

So here's the plan: Our insurance company is already working on travel and hotel plans for Shelly and Josiah. With the surgery on Monday, we don't yet know if we'll travel on Saturday or Sunday (perhaps they'll have to see him for pre-op on Sunday?), but as soon as we find out I will try to get a flight as well. The 1st week he'll be in ICU, and the 2nd week he'll be in a regular hospital room. The 3rd week they'll likely release him from the hospital but he'll have to stay in the Cincinnati area. If his recovery is "typical" (keep in mind that Josiah has never been "typical"), he'll then be able to come home for 2-4 weeks before returning to Cincinnati for a followup checkup. After that, he'll continue to return for followups, with the time between each subsequent visit generally doubling. During the two weeks Josiah is in the hospital, we'll likely stay in a downtown hotel or the Ronald McDonald house so we can be close to him. During week 3, we'll likely stay with a family in Cincinnati.

So many of you have prayed for this event, and now it appears it is almost here...please continue to pray for us as we make plans (travel plans, plans for Silas, etc.), travel, Josiah undergoes surgery and recovery, etc. Thank you!

Friday, October 2, 2009

Back Home

We're back home in NM after returning late last night. Shelly and Josiah met Mamoo this morning to pick up Silas and Eli, so we're all back together tonight.

The final day in Cincinnati went well. Josiah and Shelly stayed in the hospital Wednesday night while Josiah had an impedence probe (a tube with multiple ph probes) down his nose to his stomach while being hooked up to a monitor that collected data and looked for reflux. On Thursday morning, the tube was removed and we headed back to otalaryngology for the final procedure of our stay, another scope down Josiah's nose and throat. This was the same procedure he's struggled with before, except this time he had to eat and swallow, not just talk. HE PERFORMED LIKE A CHAMP! Perhaps it was a matter of getting used to the procedure, or knowing this was his final procedure before going home, or a result of so many of you who were praying...but he did great. A little fussy at the beginning, but then he followed directions, ate and swallowed, and kept calm. When it was over, he jumped up and down on the floor in excitement!

His medical team in Cincinnati is still waiting for the results of a few tests and will meet next week to discuss where we go from here. However, unless unexpected red flags pop up, they believe we'll be moving toward airway reconstructive surgery and trach removal in the next few months.

After leaving the hospital, we met a friend of Art's from high school and college for lunch and then headed to the airport, arriving back home after 11 PM MST (after 1 AM EST). Our bodies are still somewhat mixed up as to what time it is, but hopefully we'll get good rest this weekend.

On the adoption front, there was another conference call for families adopting from Rwanda last week. We actually missed it because of Josiah's appointments, but I did listen to a recording and there wasn't any really new information. We're still in a waiting period while our paperwork is reviewed by the Ministry in Rwanda.