A little update…

Where have we been????

Well, we are currently on our 9th trip to Philly since January, and we have been coming every 1 1/2 to 2 1/2 weeks for casting, staying 4-5 days each time. That amounts to us being away from home 10 days each month, with 24+ hours of driving for each trip. As you might imagine, life has been very busy… but good! :)  I have had to let go of things that weren’t important in order to maintain the things that are. So we are nearing the end of our homeschool year (on time!!! Woo hoo!!!), but our family room is a wreck because I haven’t been able to properly put things away yet (it turns into a storage space of sorts during the winter because we don’t heat it). Some things are worth ignoring to buy the time to do them right, in my humble opinion! :)

We have had amazing help from our friends and family that have enabled us to have a sense of almost normalcy during this chaotic time, and we are so thankful to all of you!!!

Alexandra is going to be getting her 20th set of casts on Monday and we’ll be headed home on Tuesday. We started this trip 2 weeks ago thinking that we’d be here for a week and a half and head home… but then we had our follow up with Dr. Zlotolow (who is wonderful, by the way!), and he suggested a surgery on A’s left arm that made perfect sense to increase her function (her left arm has the tightest contractures and doesn’t get a lot of use). His surgical waiting list is about 2 months long, and so I said that I wanted it done as soon as we could because we will be done with casting by then and I was looking forward to us having a break from our trips… His nurse told us we could do it on the 17th because there had just been a cancellation, and I was floored. :)  That meant staying here an extra week, but it made sense because A wouldn’t have a lot of time to stress about it (she fixates on things sometimes), we wouldn’t have to make another separate trip for it ($500 saved), and I wouldn’t have to drive out again… win!

The caveat was that for this trip I had all of my most dependent children with me… the baby, my three year old, and A- and they were starting to have a hard time at the one week mark (being away from your family, home and schedule is not a fun thing!), so how on earth could I handle an operation and post-op period alone with so many demands for another week? I admit, I had a moment of panic and called Nate ask him to come out here to help… and then after I hung up the reality set in that we couldn’t afford it and he had to preach on Sunday anyway. So I called him back and left him a message telling him that we were going to do it and he didn’t need to come. Unbeknownst to me, he was on the phone trying to call Miracle flights, Angel flights, etc… and he figured out he couldn’t get a flight because he didn’t have A with him.

I knew that the Lord would help me to stay sane somehow while dealing with everyone, and I just prayed He would send me help somehow… and He did! My friends here graciously offered to keep an eye on the younger two while A was in PACU so I could be with her, but my heart was heavy because I had told her after her last surgery that she wouldn’t have to stay overnight alone at the hospital… and she was going to have to do that once again. Little did I know that at the same time I was asking the Lord to give her strength and understanding, a wonderful family from our church was offering to fly Nate out to be with us. Everyone at our church was supportive and one of the other pastors even offered to preach even though he was just returning from vacation the day before… it is overwhelming to feel such love. Nate’s mom was able to come down and stay with the other children (who are busy with t-ball/softball and music lessons), and he arrived on Wednesday afternoon! I kept it a surprise from the children because I knew that they were so homesick and needed something to cheer them up. You should have seen them jumping up and down when they realized it was Nate that I was hugging at the airport… they had no clue!!! You couldn’t wipe the smile off of any of our faces for the rest of the evening! :)  Alexandra was beaming!!! We walked around Old City and took our special friends from Poland (fellow RMH family) to the zoo on Thursday… the Ronald McDonald House had just gotten some passes and they knew we were trying to keep Alexandra’s mind off of her surgery, so what a blessing that was!

On Friday, despite the surgery being delayed by several hours, Alexandra hopped right up onto the operating table without trepidation, and she woke up smiling with her arm turned inward and bent at 90 degrees! Dr. Z was absolutely thrilled with how her surgery went- she is the oldest child he has ever performed the surgery on, and she surpassed his expectations! She went from passive bending at her elbow (from straight arm postion) to 40 degrees to touching her nose in the OR!!! Thank you Lord!!! This is going to help her use both hands/arms so much more effectively. He will do more tweaking to her hands after we see how she functions with her arm in this position.

Our OT, Cheryl, did an evaluation pre-op to see how Alexandra would have to change methods for activities of daily living after the surgery, and she said it might take awhile for A to come up with things that work. Well, the day she was discharged she decided she wanted to get up into her wheelchair from the ground without help and not using her left arm… and she did it! This girl is inventive and knows her body well!!! We are so proud of her!!!

We are now doing more casts and then going home on Tuesday. A has been fit for her KAFO’s and AFO’s, but Dr. VB wants her to continue to cast to bring her heel down the rest of the way, and hopefully by the time the braces are done (4-6 weeks) she will be done with casts. Which is wonderful because we want to get her swimming to improve her muscles! :)  And, she misses baths!!! :)  We will be back in 2 weeks for Dr. Z to take off her arm bandages and for more casts (we’ll probably stay a week and do 3 sets again).

For those of you who are following in our footsteps, or those who wonder what doing all of this traveling is like… let me assure you, it is no vacation. It is hard work. It reminds me a lot of our time in Ukraine. The stress never stops- whether it’s dealing with a child in intense pain, traffic after a 12 hour journey, rude people who ignore you and your child and let the door close in your face rather than holding it for you, or the constant, overwhelming homesickness… the enemy knows your weaknesses and will use those to hurt you. But take heart!!! God is faithful- He has provided us with beacons of light in these journeys, and we just stay focused on bringing glory to Him through all of this. We have been shown overwhelming kindnesses by our friends at Shriner’s, the RMH, and the believers over at Tenth Presbyterian Church.

Honestly, it would be easy to say that I don’t like being here. The people (in general) in Philly are much more self centered than they are in Indiana… there is a lot less kindness when we are out and about in the city… but that doesn’t change the fact that they need Christ just as much as we do! We try to be an example for Him everywhere we go, and we use our discomfort to help us look forward to going home soon. :)  So, I don’t hate it… Philly will always have a special place in my heart because of the “helpers” here (to quote Mr. Rogers) who helped my daughter to walk!!! :)  ETA: I do NOT mean that everyone in Philly is self-centered!!! Obviously, all of the people that I have listed in this post are amazing and selfless! :)  I just mean that there is a difference when we are out and about here versus when we go out in Indiana. I’ve had people actually run ahead of us (back home) so they can get the door for us, whereas here people will stare and not smile and they will cut Alexandra off in her wheelchair with their carts. So maybe it’s just the defensive mama bear in me coming out in that comment! ;)

I’ll leave you with some photos… we were able to go to another Phillies game with the RMH- and this time they took us in a stretch Hummer! :)

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She's doing so well!!!

She’s doing so well!!!

cast #19

cast #19

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Liberty Bell!

Liberty Bell!

stretch those knees...

stretch those knees…

A's leg molds for her braces!!!

A’s leg molds for her braces!!!

Go Phillies!!!

Go Phillies!!! We even made the big screen!!! :)

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Having fun with friends at the Ronald McDonald House

Having fun with friends at the Ronald McDonald House

First haircut!!

First haircut!!

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Let’s Help Alexandra Walk!

Hi Everyone! As some of you know, we’re doing some fundraising to cover the costs of Alexandra’s trips to Philadelphia. She’s responding to her treatments very well, and her doctor is confident that she’ll be able to walk when her treatment is finished! Below you’ll find several questions and answers that we hope will help clarify why we’re asking for help…

Q: Why are you driving all the way to Philadelphia for treatment?

A: Dr. Van Bosse at Shriners’ Hospital for Children… Where arthrogryposis is their specialty. We’ve heard from numerous other families who have kiddos with arthrogryposis that he’s the man to see. He’s given hope to countless children whose parents were told there was no hope. Here’s one mom’s story (we got to hang-out with her in Kiev).

So, given the immense weight of the testimony of other families, we’re committed to taking Alexandra to Dr. Van Bosse. And after four visits with him, we’re convinced that we’ve made the right decision.

Q: Why can’t you pay for it yourself?

A: Because covering these costs ourselves would require neglecting other obligations and incurring debt. Also, we had initially planned on taking Alexandra to Chicago for treatment. In that case, transportation costs would’ve been covered. However, after hearing from so many other families whose kids had been helped by Dr. Van Bosse after wasting months or years being treated locally, we decided to ‘cut to the chase’ and go to Philly instead… Alexandra doesn’t have months or years to waste!  We didn’t learn that our local Shrine temple doesn’t assist with transportation costs to Philly until we’d received our first appointment. Which is why we’re asking for help… It was completely unexpected, as we know of no other families that have been denied help.

Q: How many trips will you have to make?

A: There will be three phases to her treatment. Phase one will require the most trips to Philly, about two a month. We’ve already made two trips and have between 6 and 8 to go, depending on Alexandra’s progress. During phase one Dr. Van Bosse is gradually correcting the shape of Alexandra’s feet through serial casting and nicking her Achille’s tendon. And we’re already seeing progress! Phases two and three will involve surgery, and thus won’t require nearly as many trips.

Q: How much does travel to Philly cost?

A: Here’s the breakdown. Total gas: about $340. Total tolls: $80 (taking non-toll roads adds time and gas, therefore it’s a wash). Accommodations: If we’re able to reserve a room at a Ronald McDonald House (RMH), cost is only $15 per night. However, we never know if we’ll have a room until the day of arrival (can’t be helped). If there’s no vacancy at the RMH, then we’ll have to stay at a hotel, which can range from $50-$110 per night. And Colleen & Alexandra will be staying for three-four nights per trip in order to have two castings performed, which cuts the number of our trips in half. So in a best case scenario, a trip will cost around $465. In a worst case scenario, it may cost upwards of $700. Since we make two trips a month, total costs per month may range from $930 to $1400. So far, we’ve been able to stay at the RMH, which has kept costs down. The last trip was exactly $500. Colleen packs food and water for the trips so they only buy one coffee there and back (at a whopping $2 total).

Q: Why aren’t you flying? Don’t some airlines offer deals for situations like this?

A: Yes, many do. However, there are a few reasons why we’re driving rather than flying. First, Alexandra needs room to stretch out after she’s received new casts (because of pain), and our van allows her to do just that. Airliners, not so much. Second, flying would require paying for taxis or car rentals, gas and tolls once we’ve arrived in Philly – on top of pushing/carrying Alexandra and carrying luggage. And keep in mind that Colleen won’t have Nate to help. Third, by driving we’re able to bring our meals with us, which means we don’t have to buy foods once in Philly. Fourth, driving provides us with a flexible schedule… if we fly, Colleen would have to leave a day earlier and get home a day later to accommodate for the doctor appointments. That means less time with the family together… And less time for all of the demands of our household.

Q: Don’t the Shriners offer help with travel costs?

A: Yes, they usually do. Our friends all receive assistance with an assortment of transportation, lodging and food. But this depends upon the policies of the local temple. Our area temple provides assistance only for folks receiving treatment at the Chicago hospital. Since we’re going to Philly (because that’s where Dr. Van Bosse is!), we’ve been told that don’t qualify for assistance. If this changes, we’ll be sure to let you know! And we’ll add that the Shriners are providing Alexandra’s treatments free of charge, so we are very thankful for that! We want to make it clear that we are not complaining about them at all, we just were taken by surprise at not being able to obtain the same help that other people have been able to obtain.

Q: What will I get out of this?

A: You get to be part of Alexandra’s amazing story! This time last year she was headed for a dismal life lived in an institution forever. But God brought her home. You brought her home. She left the orphanage forever. Now she has the chance to leave her wheelchair forever. Will you help us make sure that happens?

If you’re able to give financially, you can simply click on the Paypal button on our website. Contributions aren’t tax deductible, but they will be money well spent! If you have any questions that we haven’t addressed here, please feel free to contact us. Thank you!

What we’ve been up to…

Hello everyone!

Well, we officially have begun the treatment aspect of Alexandra’s care at Shriner’s… And we are so incredibly thankful! Here is an e-mail Nate sent out after our first visit that hopefully will help those of you adopting older children with AMC to  have some idea of what to expect, and to update all of you who have prayed for her and helped her come home…

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Our visit to Shriners Hospital in Philly was very encouraging! Thank you for your prayers. Dr. Van Bosse and his staff were exceptionally informative, warm, kind, and patient. After evaluating Alexandra, he told us that chances are very good that she’ll be able to walk after she’s received treatment. Please pray that this will be the case. Alexandra has three things working in her favor: 1.) None of her foot bones are fused (a very big deal); 2.) No prior surgeries means no scar tissue; 3.) She’s already able to ‘walk’ on her knees, which means she’s capable of balancing on her hips. But – there’s a long and difficult road ahead. Her treatment will involve three phases… I’ll add that Shriners Hospital is providing Alexandra’s care free of charge, for which we are immenselygrateful. So next time you see a Shriner, shake his hand for Alexandra’s sake. And then thank Jesus for His gracious & providential care for her.

Phase one involves correcting the structure/shape of her feet (they are clubbed). This will involve receiving multiple castings in order to gradually straighten her feet in order to accommodate standing/walking. Alexandra actually received her first casts on Monday (rainbow-tie-dye for those who’d like to know). It was pretty painful for Alexandra, but she was brave and Dr. Van Bosse was very gentle. We’ll have to travel back to Philly about twice a month for the next six months in order to complete phase one (thankfully it’s a beautiful drive!). Each trip will extend from Friday to Monday, since they only do casts on those days- she’ll receive a new set of casts on Friday, and then another new set on Monday. That will help us to cut the number of trips in half. The amount of casts is what helps, more than the length of time that they are in place. Colleen will be doing most of the traveling since I can’t miss so many Sundays. We’re also going to begin fundraising shortly in order to cover the costs of transportation/accommodations – each trip costs between $500-$650. More details to come on that point.

Phase two will require surgery that will adjust the structure of Alexandra’s legs at her hips. This procedure will straighten her legs to better accommodate walking. This won’t require frequent travel, but it will require a long recovery for our beloved daughter.

Phase three will involve correcting her knees. This will be a difficult phase of her treatment, because there’s a good chance that it will require external fixators. These are essentially leg braces that are connected directly to the bone, and for that reason they entail special care to guard against infection. We won’t know if they’re necessary until phases one and two are completed, but the doctor is pretty sure she’ll need them.

Her upper body physician (Dr. Z) was wonderful and will re-evaluate her in 3-4 months. His feeling (which was ours also!) is that she already has so much function in her right hand, and she uses her hands for mobility, so we don’t want to do anything to disrupt that right now. Once she is walking- with a walker even- he can tweak her arms so they will function better. But for right now, we want her to maintain what mobility and independence she has! :)

In total, her treatment will probably take about two years with some breaks at points in each phase. If any of you would like to know how you might help, there are three things you can do:
1.) Ask Jesus to help Alexandra, us, and her docs. Pray for Alexandra’s healing, bravery, and strength (this process is very painful and uncomfortable). Pray for us to care for her with wisdom and love. Pray for safety in travel (it is a 13 hour drive, and the hospital and the Ronald McDonald houses that we will try to stay at are in rough neighborhoods). Pray for her docs and their support staff to have wisdom as they work together to get her walking.
2.) Childcare: Colleen can’t take all the kids with her, so I’ll have some of them with me while she’s gone. Sometimes she’ll be gone from Thursday through Tuesday (it depends on how early/late the appointments are), and it’d be great to have help watching some of the kids on my workdays (Thurs, Fri, Tues).
3.) Financially: you can contribute toward transportation/accommodation costs if you feel led.

Again, thank you so very much for all of your help, love, and continued concern for Alexandra!

In Jesus,

Nate & Colleen

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Now for the nitty gritty of how it’s going…  A is doing well, in fact right now she is just playing Legos with the littles and having a great time. She is crawling on her casts now, and even still hauls herself up into her seat. Of course, we help her when we need to, but it is great that she wants to maintain her independence even though it’s even harder now then ever before. It also helps to strengthen her arms. ;)

It was very painful for the first few days, and this will be repeated with every set of new casts… So that’s the hardest part of all of this. She doesn’t want to be in pain, but she understands why it hurts, and she wants to be able to walk, so she is excited to be going to Philly. With prayer, pain medication, ice, and frequent position changes we can make it through those first few days each time.

Here’s a little story from last week… it was very difficult to see her in so much pain, and as we left Shriner’s, Alexandra begged for music- so I flipped on the radio. Nate and I both couldn’t contain our tears as she started singing along with this song…

Bless the Lord, O my soul

O my soul

Worship His holy name

Sing like never before

O my soul

I’ll worship Your holy name

 

The sun comes up, it’s a new day dawning

It’s time to sing Your song again

Whatever may pass, and whatever lies before me

Let me be singing when the evening comes

Bless the Lord, O my soul

O my soul

Worship His holy name

Sing like never before

O my soul

I’ll worship Your holy name

 

You’re rich in love, and You’re slow to anger

Your name is great, and Your heart is kind

For all Your goodness I will keep on singing

Ten thousand reasons for my heart to find

Bless the Lord, O my soul

O my soul

Worship His holy name

Sing like never before

O my soul

I’ll worship Your holy name

 

And on that day when my strength is failing

The end draws near and my time has come

Still my soul will sing Your praise unending

Ten thousand years and then forevermore

Bless the Lord, O my soul

O my soul

Worship His holy name

Sing like never before

O my soul

I’ll worship Your holy name

 

Jesus, I’ll worship Your holy name

Lord, I’ll worship Your holy name

 

Sing like never before

O my soul

I’ll worship Your holy name

Jesus, I’ll worship Your holy name

I’ll worship Your holy name

“10,000 Reasons (Bless The Lord)” by Matt Redman

We also were able to meet some amazing people and some fellow AMC children adopted from U!!! And that will probably happen each time we’re in Philly, so it gives A something to look forward to. :)

And now, for a pic of the casts… Don’t you love the spunky tie dyed pattern she picked out? :) despite the pain, she kept looking down and telling me “look, Mama! They are straight!”   The weight of the casts are making her legs come into better alignment, and she can actually see that her feet are straighter. Pretty cool stuff! :)

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Oh, and another thing… Alexandra read her first sentence in English today!!!!!

We’re just accomplishing things right and left here! :)

 

I’ll post more photos later, right now I’m prepping for our next trip to Philly (we head out tomorrow night). Enjoy this amazing day we’ve been given!

Hello everyone! Urgent!!!

I was planning on writing a post to catch everyone up after Christmas (so there would be plenty of photos for everyone!), but there is an extremely urgent prayer need that I wanted to make you all aware of.

Our government offended Russ*a with some of the decisions they made, and now they have decided to ban Americans from adopting any of their children. It is almost finalized… Putin has the final say, and he has said in numerous places that he supports the measure. To see some of the amazing kids- some of whom have families coming for them!!!- who will not be able to be adopted after this measure passes, check this blog post by my friend Julia. Lord- these children- some of them have waited for so long… please help them!!!!

Please look at these sweet faces and then sign this petition… their very lives depend on it, as they have almost no hope of being adopted in their country.