We're going to China!

One week from now we will be on a very long plane ride!!!  Can't wait!!! I am pretty sure I have been to Walmart or Target a million times these past few weeks for "one more" thing.  I have probably bought out all the remaining Thermacare back heat wraps in the tricounty area to tide me over in China.  They have been really hard to find.  Thankfully my back is feeling a lot better though.  I started physical therapy and it is really helping, too.  Thank you for all the prayers! 

We have big piles of things to be packed, but nothing in the suitcases.  The hard part is yet to come when I have to start pairing things down.  I have a bit of a control issue and would like to have every convenience item, clothes for every season/situation and medicine available at my fingertips, but four suitcases aren't holding all of that.  Suitcases also arrived from Show Hope today, too.  We are able to bring some supplies to China for them as a small token for the amazing care they gave to Matthew in China.  Shelby has being knitting up a storm, hoping to sneak some baby hats into their bags, too.  

All the plane and train tickets are bought and hotels are booked booked!  And when I first announced that we would hopefully be bringing Grace home in the spring, well it will be the very first day of spring/Matthew's birthday.  Matthew will get to spend his 4th birthday on the plane ride home, poor boy!   We also had a minor glitch with plane tickets, they had Grace sitting by herself on the way home.  I guess that wouldn't have helped the screaming toddler on a plane problem, but she was successfully ticketed back with us.  Thank you again for praying us through this journey! Next post hopefully is from China! 

                                

Green, my favorite color

Today as we got ready at the bathroom sink - I looked in the mirror and said 

"mommy needs to color her hair."  

Matthew:  what color? How bout Green? It's  your favorite color! 

First day of school & another visit with Ben

This past week marked the first day of school for the kids (well actually Matt's was just an openhouse, but he didn't know any difference).  

Robbie is a 7th grader

So far, Shelby is off to a good start with college. She even had her first home game, she had a blast!  

Lunch at Friendly's after church

First Zips game -Matthew is wearing his new Zips Jersy/dress.

We had the wonderful opportunity to visit with the family of Matthew's crib mate Ben.  What a joy to be able to have a relationship with them.  Ben and Matt really had a fun time playing with each other, they are two peas in a pod.

Bandages Off

On Sunday evening, Matthew was playing.  Jeff saw him walk buy with his drain tubing hanging loose.  Since the drain came apart a lot, no big deal... an then he saw the hanging part was the part that was supposed to be inside his face.  Oh yuck!  I have been so thankful for that emergency surgery back in July, it really prepared me for this surgery.  While everyone freaked out, I did not because I had already seen the surgeon pull out the last drain and knew what to expect.  I still called the doctor on call and he reassured me that as long as he wasn't bleeding profusely he was ok till his appointment the next day.  

I had been trying to loosen all the bandages before his appointment, but Matthew quickly would let me know "doctor do it".   After fighting with him, I was very happy to let the doctor just do it.  When it got down to it, Matthew was not so much... So far the incision looks pretty good.  It will take 6 months for all the swelling to come out and he will have to wear a strip across the the main incision for the next 3 months.  His face is on the harder side and still swollen,  but we have also been instructed to massage his face and incisions several times a day.  We have to use scar cream and sun screen, did you know little guys love to be chased around to have stuff put on their faces??  It's very hopeful, that after a year that his scar will just be a little noticeable.  

We have just started venturing out and all the looks he gets are a little uncomfortable.  I am thankful that he doesn't seem to notice the stares.  It's amazing even the littlest kids pick up on that there is something going on.  At the clinic, we even overheard a little boy call matt scary.    I totally understand, but it's still hard when it's happening.  I wish I had the time and energy to explain to each person - Matthew's amazing story, but really I just want to push my cart out of walmart and get home. The funny part of me wants to say "You should see the other guy, he wasn't so lucky...". I have been stopped and asked directly about his face by two different older asian men, and I have been more than happy to explain to them.  In many other cultures, it is considered to be cursed to have birthmarks or other markings on the face.  I fully want them to know the amazing outcome of this so called curse.  

Through all of this Matthew has not seemed to mind all that has gone on with his cheek.  I was worried we would have to keep his hands off of it, but it was never a problem.  His worst discomfort has really been from a rash of all things. If you ask him what hurts, he never mentions his face.  I have seen the pictures of half of face peeled off and flopped over to one side, but the crazy rash is what keeps us up at night???

                             

One last thing... this past weekend we received some pictures from the man we met at the SCC concert.  He had pictures of Matthew when he was 14 months old at Maria's Big house of Hope.   I would take these few photos over a mound of diamonds, rubies and pearls any day.  And again, Matthew is wearing something we would have dressed him in, we had almost the identical outfit for Robbie. We were grateful it wasn't pink like all of his outfits from the state orphanage. 

Getting Better

 

Matt has turned a corner, this second surgery really seemed to help. He is still has some swelling, particularly in the area next to his mouth where the biggest chunk was removed.   I don't know what this kid is going to do in a few months and he has so much room in his mouth.  Monday he is going to have the tape and drain removed, we will have a much better idea how things are healing.  Hopefully we should have the results of his biopsy.  The swelling should come completely out and the cheek should lie flatter in the next months. His facial muscles should get back to working better, too.   Incisions still make me queasy, and they are heartbreaking on my beautiful boy's face.  I have been more than relieved to have them covered this week.  His cough is doing much better and he has also been fever free. 

 

Matthew has somewhere picked up to call me mommy all of sudden?? It sounds a lot like his version of monkey (mut-me).  He and I went back and forth 30 times while I brought him every monkey in the house.  He kept getting madder when I obviously wasn't getting what he wanted and leaving the room to boot.  We finally asked "mommy??" - to which we got "YEEESSSSS". 

 

Matthew has become super attached to me these past weeks, rightfully so, but we will need to transition back through that in some time.  His new fascination is with watching drummers on Youtube.  We originally started watching Chinese drumming groups, but he has a definite preference for American marching bands.  He has gone through 2 toy drums in the past week and I think we finally have a half way decent one for him to jam on, some days I wish it would break ;) When he isn't drumming, he has been cutting up paper.  He awed the child development staff at the hospital as he cut up piles of paper while we waited for surgery.  They even came back and asked if he really was two years old.  Matt sometimes forgets the correct word for scissors and calls it a knife.  Nothing like having your two year old request a knife from his diaper bag in front of someone...

 

Thanks again for all the prayers, messages, love, cards, gifts and food that has been graciously given to us in the past two weeks.  We have been blessed beyond measure.  We have been through the highest of highs and the lowest of lows, but are coming out on the other side better for it all.  I have become very grateful for our hospital stay back in July, it certainly gave me a small taste of what to expect.  Otherwise, I think I would have been completely overwhelmed with so many new things thrown on us at once.  Most importantly, we are so grateful to all of you that have embraced Matt, how amazing to go from someone who had nothing, to someone who has it all. 

 

 

 

 

 

 



More details filled in

We spent almost 9 hours at the hospital yesterday for Matt's biopsies - loonng day!  He waited so patiently when his surgery got delayed for three hours, playing and never asking for something to eat.  The incision on his cheek seems to be a couple of inches and his cheek is even a lot more swollen looking then usually is. His cheek is taped and will most likely have to be for next several weeks.  He doesn't seem to be in much pain, though.  He is fortunate to have all of this as plastic surgery. 

The results won't be back till next week, but have had more details filled in for us.  There are multiple small cysts involved in the mass that innervates  pretty much everything on that side of his face. The surgeon feels that there is only a 5% chance that it could be cancerous, but the biopsy will let us know for sure what kind of tissue it is.  We can proceed with the next surgery at any time.  The next surgery will be the big one and will take four plus hours.  Most likely the incision will start under the outer corner of his eye, go just along just the bottom of his eye and down the side of his nose and smile line.  Yes there will be scarring, but hopefully most of that will be camouflaged where naturally occurring lines already are.  There is a  risk for facial paralysis on the left side, but the surgeon says that if it does happen, it could be repaired with muscles from his temples when Matthew is older.  He would have to relearn to smile though.

Gulp.... lots to digest, but still  hope. 

Leaving on another jet plane...

It's 4 am in the morning and I just dropped Shelby off for her trip to Guatemala. A group from our church with several of our dear friends is headed to work in an orphanage for a week. So very excited and nervous for her at the same time. I know this trip will be life changing - you cannot leave an orphanage without seeing life a whole lot differently. But in order to wear those "Jesus glasses" as I like to call them, there is always a sacrifice- for her it is flying without her family way out of her comfort zone with no cell phone. (The no cell phone part is harder on me than it is on her!) She was so nervous the past day, but I am so impressed that she fought through and was determined to still go. I wish one us could have gone with her, but that just wasn't a possibility this year with all our travel and with a little guy at home who is still very sensitive to change.

It wasn't that long ago that Matthew was the recipient of visits from mission groups visiting him in China. Still amazing to think of even as we approach him being with us almost 6 months, he is such a different kid. Still such a sweet little boy though! I am so happy that his hair has finally grown in! Lots of new words popping up each day, too. During the day, he still doesn't like to be in a room without one of us there with him. But at night, Matthew is now sleeping in a "big boy" bed usually by himself. He hasn't figured out that he could get out on his own and calls for us to still get him out. Since he has finally mastered climbing up and down on chairs and the sofa, the bed shouldn't be too far behind. We were worried that he only used to whisper, no problem, he found his voice and loves for us (and anyone within 500 feet) to hear him. He went to VBS with us all week and spent time in the nursery with his buddy Kaden. Matthew actually did pretty well, thankfully a set of grandparents watched over the nursery and they were able to give the boys lots of attention. I of course peaked in the windows regularly.

Now that VBS is over, we have spent the last week visiting the McKinley Museum, the Cleveland Zoo and the MAPS (military and aviation museum). He loved the museums, but Matthew has no great fondness of mannequins that they use in their displays. The zoo ended up being crazy busy and hot, not a great combination for a cranky 2 year old who decided he didn't want to ride in the stroller anymore (started giving me flashbacks of our visit to Chinese Walmart). Thankfully, we all had enough and we headed home.

So I will be ball of nervous energy the rest of the week until my girl is back home. Hopefully I can channel that into some cleaning. We also have another visit to surgeon #2 for Matthew's cheek. His team feels that the cysts/tumors may be a lot more jumbled up in the muscles, nerves and bones than we previously thought. Regardless, he still looking at surgery sometime this year.

This was kind of like the Tea Cup ride

This is how the man usually sleeps

Love that his hair is finally coming in

1st 4th of July

At VBS, Matthew with cousin Leland and Robbie.  Matthew loved the crowns and he wore out three of them this week.

They all wore red white and blue on accident - Robbie is quickly overtaking Shelby in height

At the MAPS museum



In the Goodyear Blimp gondola

My good looking husband

This is what it would look like if I was packing my airplane for vacation - everything but the kitchen sink...

The "twins", probably the closest I will get to dressing them alike