Wednesday, December 27, 2006

Happy Holidays!

We hope you're enjoying the Christmas season and are still eating all you can before the New Year's goals go into effect on Monday. :-)

We haven't posted in a while, mainly because we felt like we just didn't have much to talk about. Life really seems like it's back to normal, and who wants to hear about normal life?! :-) Elias is doing great. Totally back to his usual self. For a while there the nights were pretty difficult as he woke up constantly. It seemed as though he was/is having some kind of phantom pain or sensation and just couldn't get comfortable. Meagan would rub his little leg, and that seemed to help him relax enough so that he could get back to sleep usually. We put him back on the strong meds at night, and that also made a huge difference in allowing him to get much needed rest.

The swelling in his leg has gone down considerably and the incision is healing nicely. Right now the plan is for Chase to cast his leg on Friday, then make the first test socket. That's exciting! We went and picked out some fabric with monster trucks on it (Elias is REALLY into monster trucks right now). Chase will laminate that material into the plastic that makes up the socket. It's gonna be a cool leg! And we're hoping that the monster truck factor will make Elias excited about wearing it. He's certainly going to be the only kid on the block with a monster truck leg. Well, as far as we know at least.

A lot of people ask how often he'll get a new leg. Don't worry- he won't still have a monster truck leg when he's 28. :-) It really depends on Elias' growth and activity. Most likely Elias will get a new leg every 6 months to a year. The usual standard is a year on average. But of course Chase will want to hook him up with the latest and greatest stuff.

Meagan recently joined a support group for parents of amputee children. She's learned a lot and has developed a more realistic picture of what life will be like in the future with Elias. In short, it'll be a lot of fun and not much different from an able-bodied kiddo! But there are a few day-to-day issues that will be different (like taking off the leg for diaper changing and certain play activities) and learning about those things has helped her know more about what to expect. It will take Elias some time to learn to use his leg. And most likely he won't even like it at first, although the monster trucks might actually engage him a little- for at least the first week anyway. Our prayer is that he takes to his leg quickly, and that his 2-year-old mind will be able to catch on quickly to the fact that this new contraption we're asking him to wear will allow him to walk and run alongside all his little friends.

Elias turned 2 on December 14. Here are a couple pictures from his party and him playing with his newest toys.





Playing in the new ball pit from Lulo- complete with 350 colorful balls!











Testing out the new drum set (with built in flotation devices for pounding out rythm in the tub).









Yummy Elmo cake. Elias is a very neat eater, and at first he insisted on only using his spoon to eat the cake. Finally he caught on to the idea that eating with your hands is much faster and more fun!

Monday, December 4, 2006

Almost one week ago...

Chase here. This time one week ago, Meagan and I had just drifted off to sleep in parent housing at Shriner's in Erie, PA. Elias was asleep in a pack-n-play beside the bed and oblivious to the life-changing event that would take place in less than 10 hours. I remember Meagan and I just staring at him while he slept... admiring his beautiful little face and laughing at the contorted position that he usually got himself into after drifting off. I remember thinking, we're finally here. All the preparation for the adoption, traveling to Africa and carrying my son out of an orphanage while he was sick and weak, long nights back at home trying to find a way to assure our new son that he was loved and that he could go to sleep, exploring surgical options for his leg and future prosthetic miracles... all coming down to this.

Now... we've weathered the storm. We've crossed over the impending mountains. We've passed through the gauntlet and lived to tell of it... and we came home with a stuffed Cookie Monster doll and some left over Slim Jim's - the booty of an epic adventure.

Elias continues to improve daily. Today, Nani (Meagan's mom) helped me perform a dressing change on Elias' incision and he hardly made a peep. I was able to touch his leg, test his range of motion, and generally inspect it without any problem. He even stood on his knees and put most of his weight on his amputated side! His pain is diminishing more and more, and he's starting to push the limits. He keeps doing things that make Meagan wince but I usually get a kick out of it. For example, Meagan was in the kitchen today putting away dishes and doing other various tasks at the kitchen sink. She heard Elias say something so she turned around naturally to see what he was up to. She heard his voice but couldn't see our little boy. As she looked down, she found that Elias had pushed the chairs under the kitchen table as they should be and then proceeded to climb into them and lay out over two of them (under the table) in some sort of hide-n-go seek kind of way that he thought was hilarious. I love that little boy.

We will continue to keep you all updated on the great Evil Kenevil of Ethiopia and his latest death-defying performances as they happen.

Chase

Sunday, December 3, 2006

Post Surgery- 5th day

We've been home now for four days and it almost seems as though life is back to normal. Elias is completely off of his prescribed pain medication and is only taking ibuprofen now every few hours. Everyone told us that he would heal much faster than we expected, but that was hard to imagine when we were in the midst of the tough hours in the hospital. But it really is true! His leg is still pretty swollen but even that is getting better. As soon as the incision heals (10 days or so) then Chase will put a "shrinker" or compression sleeve on Elias' leg. This will help contain the natural atrophy that occurs, reduce the swelling, and get the limb ready for a prosthetic leg. (I have to insert here that this is all new terms and vocab for me. I try hard to get it right because Chase makes sure to correct me anytime I use the wrong lingo.) :-)

Elias still doesn't move around quite like he used to. The day after we got home, he would try to get up on all fours but then start crying pretty hard- a mixture of pain and frustration. Now though he either scoots on his stomach or slides along the hardwood floors on his knees. However, he's pretty much content to just stay in one place and play with the toys around him. Whenever he's hurting, he lets us know by saying "stuck", "I sorry", or "gentle." I was bracing myself for very difficult days of recovery, but I have to say that it's quite easy to have such a sedentary, compliant child for a few days.

We're supposed to change his bandages every couple of days. I generally consider myself to have a pretty strong stomach when it comes to stuff like this, but NOT when it's my own son! I thought I was either going to vomit or pass out last time we changed it. The incision is covered with strips so it's not even exposed. I'm just a real wimp I guess and a horrible assistant to Chase. I might have to enlist Nani to take my spot next time.

Well, off to bed. Elias has been waking up a few times during the night and I'm on "night duty". (Chase will take the early a.m. shift).

Thanks everyone for your comments and encouragement!

Thursday, November 30, 2006

Pictures






Tuesday a.m.- Dressed and ready to go down for surgery.



















Tuesday a.m., right after surgery. We came back to our room and read books for a while.









Wednesday a.m.- Finally feeling good enough to play with tractors again.










Wednesday p.m.- a brief outing in the stroller out of the hospital room and down the hall to the FUNNEST game room ever.
















Thursday a.m- Hanging out in the hospital bed, surrounded by toys and watching his new favorite, Thomas the Train. The docs removed all the bandaging around the stump and now he only has gauze and tape along the incision.








Thursday p.m.- Wagon ride around the block. It felt so good to be home and get outside!







Thank you!

Wow. I can't tell you enough how much we appreciate your prayers, support, concern, and encouragement. As we talk about this time throughout Elias' life we'll always be able to tell him about the amazing group of friends and family we have that care so much about him. It's a great feeling as a Mom to know how many people love your son.

It feels wonderful to be home and see Elias laughing and playing with his toys. He's able to lay on his stomach and play with toys in front of him. And he occasionally tries to use his good leg to scoot around.

I have to say though how incredibly wonderful the staff at Shriner's are. They took such good care of us. It's a small hospital specializing in orthopedic care for children and we felt like the only patients in the whole place. Last night as Elias had trouble sleeping, his nurse came in and told us to go back to sleep and she would take care of him. I had tears in my eyes as we said goodbye to the staff. We'll see them again though when Elias goes back for inpatient physical therapy soon after he gets his prosthetic leg.

We love you all!



On the third day...

we went home!!!

We left the hospital this morning around 10:00 and are so glad to be home!!! It was a great feeling to get in the car and head home. Elias slept almost the entire trip home, which is about 3 hours. This is the most he has slept at one time in 3 days. (Of course, mommy slept for over half that time too while daddy listened to the radio and sipped Dr. Pepper to stay conscious.)

The nights are still rough as Elias tends to wake up every few hours. We think he just gets frustrated because he can't sleep in the position he wants. (In addition to the pain of course.) Last night was another tough one but the days are getting better and better. This morning he actually seemed to be almost back to his normal self. Laughing, smiling, talking and babbling like a drunk Ethiopian trying to speak English.

So, what comes now? We go back to Shriners in 3 weeks for a follow-up appointment and will hopefully start making his prosthesis at that point. Hope you all are doing well.

Chase and the Brown Tones

Wednesday, November 29, 2006

Perseverance

Chase here again. Well, we made it through the first 24 hours and are glad to be through it. Yesterday was very rough. VERY rough. Elias was not a happy camper for most of the day because of the pain. There were times when he was almost hysterical and nothing would satisfy him. He would reach his arms up to Meagan and cry, "Mommy, mommy, mommy..." Meagan would lean down and hug him the best she could. Then he would turn to me and cry, "Daddy, daddy, daddy..." So, of course, I would lean down, kiss him, and hug him the best I could while he was lieing on his back. This would happen over and over and over... Back and forth, back and forth, back and forth. Nothing would really satisfy him. Not his favorite stuffed animal, toy truck, or tractor book. I guess the things of this world, even the things that you love, are rubbish when you're in pain. You just want the people you love and you want the pain to stop.

After a few hours of this, nurses started making phone calls. "This doctor says this... that doctor said that, we can't get hold of Dr. So-and-so..." (Don't think they weren't doing their job. The nurses and doctors actually did a fantastic job of caring for Elias and us. They are tireless workers for the sake of the children here.) Finally, at 6:30 PM, he got a dose of morphine... and all of sudden, it was like somebody bought someone a coke and the whole began to sing in harmony. Ahhh, morphine.

The night was OK. Elias slept for few hours at a time, as did we. Meagan and I drifted off around 10:00. Around midnight, I "woke up" to a couple of nurses and Meagan doing something with Elias. Naturally, my fatherly instincts kicked in and I wanted to get up and tend to my son. However, I think Vladimir Putin slipped something in my drink the night before because I felt like Barry Bonds just whacked me in the head with a baseball bat. It was like my body suddenly realized all the stress, lack of sleep, and hospital food that it had endured. Anyway, eventually after a few minutes my spirit overcame my body and I actually stood up. Elias was getting another dose of morphine. He had woke and was in some pretty substantial pain that prevented any of us from sleeping. Once again, captain morphine came to the rescue.

It is now mid-morning on the day after and things are much better. The anesthesiologist removed the epidural and Elias has started on oral meds. This is a big step as they believe that he is doing well enough to manage the pain by oral meds alone. He still has his IV in if they need to administer morphine, but they're hoping this won't be necessary.

Elias is close to being himself today. He's eating fairly well, "reading" books, and playing with various toy construction vehicles. (This kid is going to be an automotive engineer someday - if he doesn't work with his daddy in prosthetics. :) The surgeon came to see us and was so impressed that he may allow us to leave early! Please continue to pray for Elias that he would heal quickly and be able to keep his wits when he can't understand or communicate about everything going on. Pray for Meagan and I that we would have steadfast patience and godly wisdom in caring for Elias.

Persevering-

The Brown Clan

Tuesday, November 28, 2006

The BIGGGG Day

Our morning started w/ a wake-up call at 5:30. Usually, I would hit snooze at this time in the morning and roll over, but not today. I was dressed and ready for battle in less than ten minutes. Meagan and I brought Elias to the nurses station at 6:00 AM sharp as we were instructed and the preparations began. His vitals were taken, his was given a gown, we were informed on how the morning would go, and then we waited on deck. He was second in line for surgery but the wait was still substantial. Or at least it felt substantial.

A few minutes after 8:00, they came to get us. We all walked down to the surgical prep area and were given more instructions on what was to come. Our anesthesiologist came and told us that he would use an epidural for pain control unless something prevented it for some odd reason. (He did good Paul, thanks.) A few moments later, the surgeon (who has been absolutely wonderful) came and did a final inspection on Elias' leg and drew some possible incision areas. He was very assuring but also frank that he really didn't know what he would find or how things would turn out. Just to give an example, he told us that because of the shape of his leg, he couldn't apply a turniquette. What?!? Because of this, he might have to do part of the surgery today and close, then finish at a later date. Lots of unknown's.

Then the time came. We had to watch as they took him away. I'll never forget that for as long as I live. We walked to the surgical suite and then had to stop at a red line on the floor - the point of no return. (I think a Star Wars like space shield shoots up if unauthorized personnel cross the red line.) At this point, the nurse took Elias and we watched as they walked away. We stood there and waved "bye bye". Elias just stared and waved, and with his little sweet voice told us "bye bye", "bye bye", "bye bye"... no tears, no screaming, just "bye bye". Like he somehow knew that he'd be OK and was saying, "Dont' worry. I'll see ya later."

Then the wait began. We went for a short walk outside and got some crying out. We both needed to be alone and collect ourselves before we began "the wait". We had a very nice waiting room to ourselves. Nice TV, rocking chair, magazines, etc. It all seemed a little petty when someone you love is breathing on a machine and having one of their appedages severed. So, we prayed, called family, and listened to music. However, there's only so much of that you can do. You have to pass the time somehow or you just sit and think about it. And who wants to do that. So... I watched a little SportsCenter.

The phone rang at around 10:00. They had been in the O.R. for a little over an hour. It was one of the surgical nurses, "Elias is doing fine. Just wanted to let you know. " More praying, phone calls, and... yes, I watched a little more SportsCenter. You gotta pass the time somehow!
At about 11:00, the nurse called again. "We're just about done. Everything went great. Dr. Sanders is closing right now. He should be out to see you soon." Ahhhh.......

Dr. Sanders came in and was happy. We liked that. Things went very well - almost better than expected. No sutures/incision on the bottom of his residual limb or stump. (We say Residual Limb or RL in prosthetics.) Just a straight suture down the back. Wow! Wow! Wow! That is amazing! I'll provide more details on that later.

It is now almost 4:00 PM and Elias is in Mommy's lap. He's a little fussy but that's mainly because he can't get up and move like he wants. He has to stay fairly sedentary because the epidural is still in to provide pain meds. This is our biggest prayer request right now - that he will be content and stay still. He is all boy and likes to be on the move. This has proved to be a challenge but we know that we'll get through it. We'll write more later as we can.

Thank you all for your prayers. God bless-

Chase, Meagan and the amazing Elias

Sunday, November 26, 2006

Elias' Adoption Story

Chase and I adopted Elias from Ethiopia in May 2006. We befriended several Ethiopian families through my job working with refugees and had become very fond of the Ethiopian people, culture, and food. When we learned of the orphan crisis in Ethiopia, Chase and I immediately felt God was leading us to adopt. As we prayed through this decision, we felt very strongly that God wanted us to adopt an amputee child as my husband, Chase, is a Prosthetist.

Our adoption agency (http://www.adoptionadvocates.org) did not have any children in their care with missing limbs or in need of an amputation, so we anticipated waiting for at least 6 months before receiving a referral for a healthy infant. However, just four days after our paperwork was sent to Ethiopia, our agency director sent an email to say that they had just recieved a little 13 month old boy into the orphanage who had a leg deformity that would require an amputation. The reality of going through an amputation with a child was hard to think about. But we knew that God had chosen this boy for our family. And now we can't imagine our lives without him!

The last several months have been the very best of our lives. It is an honor to be the Mom and Dad of Elias. He is sweet, sensitive, snuggly, fun-loving, loud, and all boy! He loves trucks and tractors. And he likes books too... as long as they're about trucks and tractors. :-)

Elias' Leg

Elias was born with a leg deformity called popliteal pterygium. Basically, this means that there is a large webbing of skin behind his left knee that connects the back of his thigh to the back of his calf. Also, his foot is not fully formed. The doctors have determined that the best course of action is to amputate his leg through the knee, called a knee disarticulation. This enables him to keep all of his femur which will really help him "weight bear" on a prosthetic leg and provide him great mobility.

Many people have asked why the doctors don't just cut the skin and straighten Elias' leg out. We wish they could! But, his foot is deformed and would never be functional. Also, because Elias was born with the webbing, he would always struggle with his knee being contracted. Even if the doctors tried to straighten his leg, it would take multiple surgeries with no guarantees and little function gained. So, an amputation is the best option and will allow him to have good function and mobility.

Once Elias heals from the operation (2-4 weeks), Chase will start the process to make Elias' prosthetic leg. Hopefully he'll be fit with his first prosthetic leg in late December or early January. It will take him a while to develop the strength to use his leg. He's already in physical therapy now and will continue working with his therapist at least a couple times a week. After Elias has his prosthetic leg, he will go back to Shriner's Hospital for inpatient PT for 3-5 days. It will be an intense week, but very beneficial for him. Elias was very small and weak when we brought him home from Ethiopia in May. In fact, he could barely even scoot across the floor. Now we call him "the tank", both because of his huge weight gain, and also because he crawls so fast, no matter what or who is in his way. He's a very determined little boy and we have no doubt he will do very well with the challenges ahead of him.

New Blog

We've created this blog to keep our friends and family updated on Elias' progress as he has surgery this week and then goes through recovery in the weeks to come. We figured this was the easiest way to communicate with everyone. So, check back occasionally for details on Elias. We'll try to post updates a few times this week while we're in the hospital.

We leave on Monday afternoon (11/27) to drive to Shriner's Hospital for Children in Erie, PA which is about 3 hours away. We'll stay in family housing at the hospital that night then Elias will have his surgery early Tuesday morning. The surgery is only 2 hours and the doctors anticipate Elias staying in the hospital for at least a couple of days. We hope to head back home on Thursday or Friday where Nani and then Grammie Lew will be coming to help out and give some TLC to their grandson.

We thank you so much for your support and prayers! We're nervous and sad about the days ahead of us, but we are peaceful and encouraged as well. Our God is big!

For those of you just joining us, the next post will be a quick synopsis of Elias' story.