Family Pic Nov 2015

Family Pic Nov 2015

Sunday, May 27, 2012

All about Julia

God has taken this little girl who would have died within a couple of months had we not gotten her and blessed her with a family.   He led us to rescue her.  She is continually showing the world what love, family, and good medical care can do to redeem a life that would have been lost. All glory be to HIM!!

Julia is doing incredibly well lately, but had some troubles over the winter.  She was having terrible wretching episodes every time she had a bowel movement.  Trying to figure out the underlying cause for these episodes was difficult.  In the beginning she had a fever, so we just assumed she had a stomach bug. But when it continued, we suspected something else.  Her GI doctor did an xray of her tummy and found that she had a lot of stool in her intestines.  They had me give her some pretty hefty doses of Miralax over a 6 hour period of time to clear her out.  Boy was that fun : /  But it did seem to help her.  She was having terrible constipation even though we gave her Miralax daily to help keep her regular.  When she was suffering with this terrible wretching, we were stopping her feedings of Pediasure and giving her Pedialyte.  Then she would be fine.  The GI doctor also switched her to Pediasure Peptide which is supposed to be easier on the stomach.  She had lost about 3 pounds during this time period.  But now that she is doing well on the Peptide formula, along with giving her more Miralax daily, she has gained the weight back.  At her last doctor's visit they said she looked great, had put all the weight back on, and grown another inch in length.  She is in 4T clothes now!  That's pretty good for a 5 year old, who only a little over a year ago was in 18 mo. clothes and 15 1/2 pounds. 

In the beginning of April we had her evaluated by a feeding clinic, physical therapy, occupational therapy, and speech.  There is a long wait (like 6-9 mo.) for the feeding clinic and they said that there is no physical reason for her to eat orally.  She really does NOT do well with anything we give her orally.  Not only does she have trouble, but she really does not like it.  She gets very upset if you push it too hard.  So we have her on the waiting list and will decided what to do when the time comes.  She has her first PT appointment on July 2.  Both the PT and OT therapists said they can't wait to get Julia into the clinic.  They think she has a lot of potential.   So we are excited to start that soon!

One other problem we had been having with Julia is her inability to fall asleep at bedtime.   We would get her ready for bed and put her in her crib and she would spend 3 or 4 hours squealing and screaming in delight before finally zonking.  One problem with this is Julia shares a room with our 4 year old daughter Regan.   And Marina will be joining the girls in this room when she comes home.  Julia will be keeping them up every night.   We tried turning off the night light (even though Regan did not like this) to make it completely dark in the room and took all toys out of her crib.  It didn't matter one bit.  She still happily ranted at the top of her lungs.  I know, its a good problem, right?  But it also seemed to be difficult to get Julia up and going in the morning.  Likely because she wasn't actually falling asleep until around 11 pm, even if we put her to bed at 8.    I did some research and read that some children with neurological disorders can't fall asleep at night because their brain doesn't make a certain neurohormone that puts you into sleep.  So we tried giving her a low dose of liquid Melatonin right at the end of her last feeding for the day.   And it worked.  We get her into her crib with lights out within a half an hour of giving her the Melatonin and she falls asleep very quickly.   And stays asleep : )

Overall, she is now in a very good routine.  Feedings are very regular, she is passing bowel movements with ease, she is happy almost all the time, she loves her toys and her playpen and she continues to grow, gain weight, and get stronger all the time.  What more could we ask for?  She is such a sweet little girl and we are so blessed to be her family.

Saturday, May 19, 2012

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

Wednesday, May 9, 2012

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.