Marina's Adoption Update

Lately I have been so busy updating everyone about Aaron's surgery and recovery and upcoming PT, that I thought it was about time to let you all know where we are in the adoption process.  For those of you who are new to following our blog or just hearing about us adopting again, I wrote about our beautiful Marina here.

We finished our homestudy at the end of March and have been steadily working on getting our dossier together.  Some of you who had followed our adoption process with Julia and Aaron may remember the fiasco we had getting our mortgage document notarized.  Well, this time we decided to get started with this early on.  They still took forever and messed it up once.  But we did get it done right, even though it was still one of the last documents we got back.  You will find it amusing that the error they made was one of the same errors they did the last time.  The document they sent us was not an original.  It was obvious that a person in one department signed it, faxed it to another department to "notarize" it (without having witnessed the signature), and sent it back to us with a big line down the side, indicating it was faxed.  And looking closer you can see that the signature is a copy.  They are not too smart.  And it's not legal!!  Anyways, I called (and tried to be as patient as I could) and prayed beforehand that I would get someone on the phone that could understand what I was about to explain to them and be able to send us another one promptly.  Praise God, He answered my prayer.  The woman said she would personally see to it that it got done properly and that she would overnight it to us when it was ready.  We had a correct document in one week.  Last time it took them 5 or 6 times to get it right.  PHEW!!!

Up to this point, we still had not received our letters from USCIS with dates to get our fingerprints done.  It seemed to be taking longer than usual.  Just when we were about to start looking into it, the letters arrived in the mail.  So this past Thursday we went and got our prints done and amazingly our approval came back in ONE DAY!!  We quickly got it notarized this morning so Steve can drive to Richmond on Monday morning and get everything apostilled.  If all goes smoothly on Monday, our dossier will be complete and ready to go! 

So far, we have been able to cover all of the adoption expenses.  It has amounted to about $4,000.  We have Marina's grant fund button on the blog and are very grateful for the $410 we have received, without even asking!!  Thank you so much.  We have hesitated to specifically ask for donations, as we have been unsure about how much of the adoption expenses we will need help with.  There seemed to be so many variables.  We had been unsure about what Shriners was going to expect for copays/coinsurances for Aaron's surgery.  Not only is Shriners known for its exceptional medical care for cerebral palsy children, but also for their ability to provide medical care free to the patient.  We assume this is possible because they operate largely from donations.  But due to the struggling economy, we have recently found out this may not be the case.  We are anticipating that we may have to pay the copays/coinsurances for all of Aaron's pre-op visits, the operation, and the many subsequent follow up appointments, on top of all the expenses we have incurred in traveling back and forth to Philadelphia so many times.

Another variable was being unsure of the timing of our travel this summer.  Now that our dossier is almost complete and we know about when it will be submitted, we have a better time frame of when we will travel.  It looks like the referral appointment dates are typically 6-8 weeks from submitting the dossier.  This would put us traveling in late July/August when airfare and apartments costs are expected to be high due to the world cup soccer tournament and the summer olympics.

And the last variable is the tax credit for the adoptions of Julia and Aaron we thought would be helping us immensely with all of this.  We filed our tax return back in January when we were first praying about adopting Marina.  For some time we had been thinking that the best thing to do with the forthcoming tax credit from Julia and Aaron's adoption would be to prayerfully consider adopting another child.  The timing of it seemed almost perfect as we came across Marina when advocating for Valentin right around when we would be filing our tax return.  We knew in our hearts that God's plan was for her to have a family, to be part of our family.  And so we assumed this was how He was going to make it happen.  But back at the end of March (2 months after filing), we received a letter from the IRS stating that they were going to take 45 days to review our tax return.  After this 45 days they stated they would either deposit the tax refund, ask for more information/clarification on our tax return, or deny the refund.  We still have not heard a word from them requesting any additional information or anything!  And it has been well over 45 days.   We have absolutely no idea when this tax credit will come to us.  From what we hear, many others who have filed for this tax credit are in the same boat.  It is not looking hopeful and we were very much relying on this money.  We are wondering if God may have a different plan, a different purpose that may transcend just our adoption of Marina.....only He can see the bigger picture here.  But what?  At this point, we just don't know.  We can only seek Him continually,  follow His will in our lives, and trust in Him to provide.

Over the last month or so I have come across the story of Gideon several times.  In Judges 6 and 7 Gideon is chosen by God to lead the Israelites to defeat their enemies, the Midianites.  After asking God for "signs" that He truly wanted him to lead the army, Gideon gathered 32,000 men to fight.  But God promptly tells Gideon that he has too many men.  The Lord said to Gideon, "The men you have are too many for me to give them victory over the Midianites.  They might think that they had won by themselves, and so give me no credit.  Judges 7:2  Of the 32,000 men, God only allows 300 men to remain in Gideon's army.  This must have seemed unimaginable to Gideon and to his army as well!  But God did not want or need a big army to win.  In fact, they defeated the Midianites without even fighting!   So I am now wondering if we were too quick to assume that the large tax refund was going to fund Marina's adoption.  I am not suggesting that God is planning for us to hop on over to EE with $200 and expect to return home with Marina.   But I do believe that God is looking for more of an opportunity to let His power, His provision, and His sovreignty to be visible.....for the glory to be all His!

After having spent the last month praying specifically over this, along with consulting close friends and family over what we should do, we are coming forward to ask for help.  We are praying that God will provide us with the donations HE KNOWS we will need to bring Marina home. We are providing three ways for donations to be accepted.  First, we have Marina's Reece's Rainbow grant fund up here on our blog, which is tax deductible.  We will continue to leave this up on our blog.  Second, we are setting up a chip in for the rest of the anticipated costs.  If we meet this amount by other means, we will simply end the chip in.  And last, we would like to announce that we will be having a BBQ at our home on Saturday, June 2 at 3 pm with an opportunity for free will donations.  Thrivent Financial will match funds up to $500.  If any of you who follow our blog are local and would like to attend,  please comment with your email address.   I can add you to our evite invitation which will have all the information on the BBQ, including our address.  We would love to meet some of you in person, if possible!   If you are unable to attend, but would like to donate this way, checks can be made out to "Thrivent Financial-Fredericksburg" and write "Schwenzer adoption" in the memo line.   Any donations given above $200 will automatically receive a receipt in the mail for tax deduction purposes. For donations less than $200, a receipt will only be sent back if you specifically request one.  Checks can be mailed to this address:

Thrivent Financial-Fredericksburg Chapter
1320 Central Park Blvd. #223
Fredericksburg, VA 22401

We are humbly pleading for you to prayerfully consider helping us bring Marina home.  In our sinful human nature, we admit we are anxious about submitting the dossier without knowing how we are going to pay for the rest of the adoption process in 6-8 weeks from now.  We are desperately trying not to worry about this aspect of her adoption and putting it in God's very capable hands.  All we can do is trust that He alone knows all of our needs and will provide accordingly. 

Then Jesus said to his disciples: ‘Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear. Life is more than food, and the body more than clothes. Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest?’” Luke 12:22-26

Aaron is crazy flexible!!

Aaron's full casts are off!

Two days ago Aaron, Ethan, Evan and I made the trek up to Philadelphia again.  Yesterday morning Aaron had his appointment at Shriners and got his full casts off.  Before I get into yesterday, I will back up a bit and explain the post-surgery process up to this point.  But first, here are few pictures I took of Aaron before we left the house on Monday.  Check out the flexibility!

Aaron's first post-op visit was around two weeks after the surgery.  We knew we would be going back up to have him start what they call the "wedging" process.  Immediately after his surgery, the doctor came and explained to me that although they were able to sufficiently lengthen the muscles in his legs, they were not able to completely straighten his leg.  Since for so long his legs have had these contractures and from crawling so much his whole life, his knee joints would not straighten out all the way.  The plan was to come back in two weeks, take the bar off that was holding his legs apart (keeping his abductors from tightening back up) and saw around the underside of his knee to break the cast open and put a plastic wedge in place to straighten the joint out a little bit at a time.  Yes, this meant weekly visits until his legs were completely straight.  The doctor was very impressed with how far he was able to open them up on the first visit.  It did cause Aaron some joint pain over the next couple of days.   Thankfully, it only took one more trip of this before the doctor said his legs were good to go.  That was three weeks ago.  The next time back was to get the casts off. 

This brings us to yesterday.  I was extremely nervous about this appointment, because Aaron does not do well with loud noises.  Especially a loud noise that causes him any kind of discomfort.  When they had sawed around his knee to get the first wedge put in place, he was screaming and holding his hands over his ears just turning the machine on.  They showed him how the "saw" won't cut his skin, but will cut the fiber glass.  They put the saw up on their own hands to show him. But like I said, he does not like loud noise.  (Even at our Easter service at church he had his hands covering his ears while the orchestra played.  And he flinched every time the cymbals crashed.)  Poor guy.  Anyways, he was inconsolable as long as that saw was going.  It does feel like a very intense vibration.  I basically had to pin him down and let them do their work.  While I was holding him down, my elbow bumped the top of his cast and I could feel the vibration of the saw through my arm and it is a very funny and intense sensation.  So you can see why I was very anxious about them taking his entire casts off where they were going to have to saw all the way down his legs.  About an hour before his appointment I gave him a dose of his Valium that was leftover from the surgery in hopes that this would help him.  It did.  He was much calmer.  He was still anxious.....whimpering, squirmy, a few yelps, but definitely not out of control.  I did not have to pin him down again. 

After they finished getting the casts off, we went over to the orthopedic department where he was fitted for AFOs.  He picked the American flag print.  That's my boy!! The braces will not be ready for about 4 weeks.  Then we went back to the clinic to get short casts back on.  The doctor does not want him overextending his heel cords in the next four weeks.  But he does want him on his feet, putting weight on his knee joints, and to start trying to walk.  Thus, the reason for recasting the bottom half of his legs.  Aaron chose camouflage print for his short casts.  They gave us casts shoes to help him be steadier on his feet.  Before they recast his legs, I took a picture of his heel cord incision. I think this shows why he was in so much pain after the surgery as he suffered through countless muscle spasms.

Over the rest of yesterday and today, he is back to being in quite a bit of intermittent pain.  His legs are reacclimating to being able to bend again.  He even prayed at lunch today for God to help him with the pain and to be able to learn to walk.  If they are bent or straight for a period of time, it is always painful to get them in the opposite way.  We are learning that it helps if he can relax himself and not anticipate pain and tighten up.  We try to get him to relax and just let his knees bend and straighten on their own depending on the position he is in.  He had slept with his legs bent for the first time in a long time, so when he woke up, it was very painful for him to get them straight when he wanted to get up and play on the floor.  Then when he needs to get put on the potty or in his booster seat at meals, it hurts for them to bend down again.  Each time it seems to get a little bit better, but the key for him is to learn to relax and not get so tense.  We have also had him walk across the kitchen twice today.  He is not bending at the knee much, but that will come.  The important thing at this point is that he continues to put weight on the knee joints.  He is a strong little trooper.  He amazes me all the time.   Here are some pictures of him in his new casts today.

Aaron's Surgery Part 2

When Aaron was waking up from his surgery, he was in complete agony.  It was horrible.  His legs would "spasm" and cause him excruciating pain.  I have never heard him scream like that before.  It was so heartbreaking and frustating for me to watch him go through this.  From what I understand, when they "lengthen" the muscles and cast them as straight as they will go, his body/brain still wants to try and "contract" the muscles the way they are used to being.  Thus the spasms.  On top of this, the muscles have been traumatized by the lengthening/teasing of them.  As he became more lucid he began screaming, "Take the casts off!"  I can only assume that he thought the casts were causing his pain.  I tried to reason with him that they couldn't take the casts off and that even if they did take them off, his legs would still hurt.  But he was beyond reasoning with and continued screaming.  I am sure it was scary for him to have his legs confined in a position they have never been in.  By the time they moved him to his recovery room, his blood pressure and heart rate were spiking pretty high every time he had a spasm.  At one point his blood pressure reading was 153/102 and his heart rate was hitting the 150s.  The nurses were trying to rush the doctor to order some better pain management meds.  They ended up finding the perfect combination of valium and morphine.  The valium not only relaxes the brain, but it also relaxes the muscle spasms.  It worked very well.  I was so much more relieved when they were able to calm him down.  But this combination of meds caused him to be very sleepy.  This was good for overnight!

The next day (Friday, March 23), they wanted to wean him off of the morphine to Tylenol with codeine.  And he really wanted to go home!  They wanted me to encourage him to start eating and drinking so they could take out the IV.  In order to go home, he obviously needed to be able to take his meds orally, be able to eat and drink sufficiently, and get into a wheelchair.  But he was fighting sleepiness and not feeling like eating or drinking.  He complied as best he could.  Here he is forcing the best smile he could muster up, given how uncomfortable he was.  Any slight incline in his position (other than completely flat) caused him significant pain on the backs of his hamstrings.  He could only tolerate an inclined position for short periods of time.

Later that afternoon, the doctor told me he could go home whenever I felt comfortable getting him home.  It is about a 4 hour drive from Philadelphia to our home in Virginia and I was worried about having to make stops with him or hitting traffic if we traveled during the day on Saturday.  So I opted to hit the road at 8 pm that Friday night.  My hope was that I could drive it straight through while he slept.  They gave me a specially designed restraint system so that he could lay flat across the middle bench of my suburban. 

I definitely made the right decision as we hit no traffic and made it home in a little less than 4 hours with only one stop for gas.  He did become pretty uncomfortable and cried during the entire last half hour of the trip.  I was so glad to be home and so was he.  Carrying him flat was quite a challenge.  He normally sleeps on a bottom bunk bed, but this would have been too difficult to get him onto.  So we pulled out our futon in our bedroom and let him sleep there for the first couple of nights.  Here he is right after we arrived home and got him set up for his first night home.

Shriners is a wonderful hospital and the doctors and nurses were so good to him.  The pillowcase and tie dye blanket you see in the picture are his to keep from Shriners.  They let him pick them out himself.  He still sleeps with them : )

Since his surgery, we have made two follow up visits to Shriners Hospital.  In my next post, I will explain more of the post-surgery recovery, the "wedging" process they have had to do, and when he is to get his casts off.

Aaron's Surgery Part I

I would like to update you all on Aaron's leg surgery in a couple, maybe even a few parts.  I keep intending to sit down and write a post, but there just seems to be so much to share that I don't have the time to cover it all in one sitting.  So my plan is to go back and cover a little bit at a time.

After applying and being accepted into Shriners Hospital for Children in Philadelphia, having an evaluation, and completing a motion lab study, Aaron's surgery on his legs was first scheduled for November 18, 2011.  I canceled and postponed it.  Knowing what he was going to endure, that he would be pretty immobile for a couple of months.....I just couldn't do it over Christmas.  He was SOOOO much looking forward to Christmas!  It seemed that it was all he talked about.  Even though he can't walk unassisted, he is quite proficient at getting around by crawling.  Some of his friends at preschool have challenged him to crawling races and he is still the reigning champ!!  Even though he can't walk and run like other children he is around, he still has so much fun and never complains that he can't.  I often wondered if I would catch him watching other kids, looking at them longingly, and wishing he could have the same fun that they are having.  But he truly doesn't.  When kids are playing outside, running around, kicking balls, whatever....he watches them in absolute delight.   He seems to be having fun through them.   Don't misunderstand me though.....if you ask him directly if he wants to learn to walk someday, he enthusiastically exclaims YES! 

Ever since he could understand English, we have been talking to him about having surgery on his legs to help him learn to walk.  He understood why we moved the surgery back and was perfectly okay with it.  Christmas was on the horizon and he was just so excited about it.  And yes, he did thoroughly enjoy celebrating Jesus' birth.  After Christmas, he began talking more about the surgery and we continually explained the surgery and answered all of his questions.  We still wondered how much of what we told him he could comprehend.  He knows he would be asleep while the doctors "fixed" his legs.  He knew that nothing would hurt while he was asleep, but that when he woke up he would be in pain.  We explained that the doctors would give him medicine to help it not hurt so much.  Even as we left the house for the 4 hour drive to Philadelphia, there was not an ounce of apprehension.

The surgery was Thursday, March 22.  He and I drove up the day before and stayed overnight with friends that live in the city, not more than 15 minutes from the hospital.  This has been such a blessing to us, as we have had to make two follow-up trips since the surgery.  His surgery was at 9 am and we needed to be at the hospital by 7.   He was still not the slightest bit nervous as we got out of the car and headed into Shriners.  In fact, he was excited!  They took us up to his room that he would stay in while he recovered.   Now all of the sudden he was nervous.  It was like a switch.  I am still not really sure exactly what hit him at that moment, but it hit.  He started crying and getting weepy and told me he wanted to go home.  It was so sad, especially since I knew how difficult his immediate AND long term recovery was going to be. 

Soon they were ready to take him to the pre-op room.  I was able to stay with him until about 10 minutes after they had given him some oral medicine to make him relax and get sleepy.  They wheeled him into surgery at 8:50.  During the surgery, I kept myself busy having breakfast in the cafeteria, unloading the rest of our things from the car up to our room, praying, reading the Bible, and eating lunch.  The surgery was almost exactly 4 hours like they said.  The purpose of the surgery is to "lengthen" the muscles that are so severely contracted.  This lengthening of these extremely tight muscles is done by cutting and/or "teasing" the muscles in different areas in order to stretch them into the position they have been unable to stretch to.  The lengthening procedure was done on his abductors, hamstrings and heel cords.  Then his legs were cast from his groin down to hold his legs in the correct position, which included a bar between his legs to hold his legs open.  Prior to surgery, he picked to have his legs cast in two different colors.  Orange on one leg, blue on the other.  His two favorite colors :  )  Here is a picture of him when I first saw him in recovery.