Merry Christmas

 

Hopefully everyone had a very Merry Christmas!  This year was extra special to have Matt celebrate his first Christmas with us.  We attempted to keep things lower keyed, but there is only so much low you can go with Christmas.  He adored opening all the presents.  He started his present opening a few days before Christmas at Grandma's house.  She let him open a few stocking stuffers and he was pretty excited with the Kleenex he received - little did he know what was waiting!

 

Brother time

These two cousins were not only adopted within a few days of each other this year but they also shared their first Christmas together

 

Akron Tuba Christmas - Shelby was one of 500 tubas and baritones to play

after 40 shots - finally a good one!

One of many family pictures - mom got a little cut off as she slid into the picture after setting the timer

Mom and daughter traditional matching jammies

Robbie's new paint ball gun - yes that is why many of our tree trunks have orange paint on them

...they had just settled down for a long winter's nap

Marching Band practice with cousin Leland

December & November Catchup

Making Advent ornaments

Big Boy Coat

A way too ugly sweater

Playing Choo Choo with his monkeys and a choo choo even gets to ride on the choo choo

Costume fun at Adventure Village

 

wise men from the East...

Drumming for Hill's Birthday

Hill's 1980's 29th Birthday



This boy can rock the sled - he has figured out to wiggle the sled till it started moving down the hill.

Mom and Matt selfie

What you pack to take a nap...

 

Daddy's Birthday

Most Outstanding Band Senior

Way too much with a package of mustaches

Decorating his first Christmas Tree



Celebrating cousin Cassidy's 19th Birthday. 

Drumming pants and candy canes

All this boy's joy - his football jersey, his drumming pants and a monkey playing the cymbals toy filled with dean (how he pronounces candy).  Robbie continues to wear shorts during winter and little man wants to do everything big brother does.  So in order to get Matthew to wear pants, I call athletic pants "drumming pants" - hence the 20 minutes to get dressed in the morning is now 4 minutes.  Happy Matt ~ Happy momma! 

  I have also now had to move the dean (aka candy) in the house to a much higher spot.  Matthew is able to get the stool and help himself, especially when I am on the phone ( there is a certain Childrens hospital in Akron, Oh that has completely messed up Matthew's medical billings.  They work amazingly fast to collect money, refunding someone's money, this is a different story.  We are on the phone a lot!!). I digress though... It appears candy canes may have a laxative effect eaten in large quantities. 

                                     

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. 

Snow Footballs

We had our first real snow for the year. Matt is still bandaged up and hooked to a drain for another week.  He isn't exactly looking winter chic in his hodge podge snow clothes - time to get some new snow pants and boots. It turned out to be great snow to make snow ball (or snow footballs as Matt called them).  I made him a mini snowman which lasted all about 3 minutes before momma's little angel knocked him over.  He is still playing on the porch by himself while I watch through the window.  Every few minutes he knocks on the door to hand me a new snow football.  Of course since he is 2, he also had to try and eat the snow - he was not a fan - yuck!

And A birthday shout out to Jeff and my Mom!  Matthew is going to feel like it's his birthday - having Chinese food for dinner :)

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. 

 

 

 

 

 

 



Another Zip!

Shelby has been accepted at the University of Akron for Fall 2014 - yaaayyy!  This girl has been talking about going to Akron since she was in single digits.  She even received some unexpected scholarship money to go there.  So far her intention is to go into elementary education, there isn't a person more suited.    As you can tell from our pictures, we have not tried to have any zip influence on her...              

                           

Home again

We are home again - Matt's procedure went really well.  Thankfully there wasn't a bleed.  They were able to do a few revisions on his nose and skin around his nose and clean out the wound so it heals better.  They were also able to take a biopsy on his right cheek that he needed.  They also took out the sutures holding his eye shut.

He still has a way to go, but his face before the swelling is really starting to become symmetrical.  Praying that he doesn't ever have anymore surgeries, it's a huge weight off now that this really big stuff is taken care of.  He had to have a bit different sedation this time due to the cough/viral issues.  This type didn't agree with him very well and he was so upset when he came to.  He was one strong boy doing his 360s on my lap with all his cords and drains attached to him.  

Waiting to start

Back to Surgery tomorrow

It's been a rough couple of days.  Matt started developing a bad cough on Sunday and has been going back and forth with a low fever.  I took him for surgery recheck yesterday and to take off the tape- ouch!! The surgeon feels like his face shouldn't be this swollen.  He would like to open his cheek to look for a bleed.  He also thought Matt needed a chest X-ray to rule out pneumonia.  X-ray came back clear for pneumonia, but he does have sometime viral/asthma going on.  I took him to the family doctor and she gave us nebulizer meds.  His cough seems to be getting better today and anesthia has cleared for another surgery on Wednesday.  Lymphatic malformations just seem to be tricky in their nature and don't always respond in a typical way.  

Matthew has otherwise been more playful and starting to get back a little of his hearty appetite.  He has been super cuddly and is usually attached to my side most of the day.  We have also been sleeping buddies this past week, I am so thankful for that extra twin bed in his room.   It doesn't seem to be lost on Matt to have a mama by his side ALL the time, he has been very peaceful.  Thankfully, we also have a new batch of Curious George from the library.  We should be back home after the surgery tomorrow.  

Glorious Unfolding

We had the amazing opportunity to attend the Glorious Unfolding Show Hope concert and to meet Steven Curtis Chapman.  We were told to stop by the Show Hope table and introduce ourselves.  They were so excited to see Matthew and said if we could stay to the end that Steven would love to meet Matthew.  A day doesn't go by that we don't think about what has been done for Matthew through  the Chapman family, Show Hope and Maria's Big House of Hope.  It often brings me to tears for what has been done for Matt and to be able to thank Steven in person was priceless.  He was as nice and sweet in person as we had heard.  I know Matthew didn't fully understand everything, but he was all smiles to meet him.  We also got to meet a few people who met Matthew at Maria's in China - one even has a video to send us of Matthew - really priceless to be able to fill more of Matthew's story.  

After surgery and HOME

Home after a long few days.  Our boy is the most brave 2 year old I have ever known.  He has gone through such a lifetime of hard and he isn't even 3 years old yet.  So hard to explain to Matt that so many of these things are going to hurt, but we have to do it to make him better.  He has been less than excited  to have bandages removed, wounds cleaned and medicine put on.  Thankfully, he has been an angel taking his liquid meds by mouth.

Originally, I was the only one who was going to to stay overnight with Matthew at the hospital.  During our last hospital stay, we had a very nice private room with its own bathroom and a fold out couch. This time after waiting over two hours for his room assignment, they wheeled us up to a semiprivate room with 4 patients per room and no bathroom.  My heart just sank.  I knew Matt would have a really difficult time with being left alone every time I had to leave the room.  Unfortunately, abandonment is never far away in his memory, and when I say really difficult I mean terror and panic stricken with a cry that will pierce your heart.  He has come so far in the past 9 months, but throw in pain and a hospital we are back to square one.  Did I mention the room also had a about 25 people visiting in it when we arrived with only a semiprivate curtain  semi-separating us from the next bed? Ugh, so much for privacy, too. Thankfully, Jeff is my rock and didn't think twice to stay and share our glamorous accommodations together. 

It's best that this picture is blurry...

Over the two nights, we shared our not so semiprivate room with 5 different babies, two being under a month old.  I can't imagine the circumstances and I find it hard to believe that decisions were made easily, but most of these babies didn't have anyone with them for most of their stay (where did all the people from the night before go??) These babies were so different  when then did have someone there to hold them, it was heartbreaking to see the difference.  Strangely, there wasn't any monitoring device to let the nurses know when the babies were crying.  This was fine if the door was open and they could be heard, but they were out of luck if it the door was closed.  I frequently would pop my head out the door to let the nurses know the babies needed someone.  I really believe it did Matt's heart so much better to have both of us there the whole time.  He has had his time being without parents, if I can help it he won't ever know the experience again. 

Matt's face has a huge road to recovery.  It is really hard to see him in pain, bruised, sutured and swollen.  Right now his left eyelid is sewn shut to prevent his eye from sagging.  His cheek is also taped down to help with the swelling.  His incision goes alongside his nose and up all the way under his eye.  The surgeon asked us if we wanted to see pictures of the surgery, I could only take a few peeks.  It is astonishing and I promise not to post any pictures.  The surgeon was able to remove a 3 inch tumor and all the remaining lymphatic tissue that was above the line of the facial muscles.  At one point, the mass went all the way from just under the skin to the mucosa of the inside part of his mouth.  The surgeon tested all the muscles and nerves and everything was still working.  It may take a couple of months for it all of them  to be working up to speed though.  And oh joy, we also have a another drain to take care of, too. I will have to say after having my super barfer Robbie, I have grown very accustomed to handling vomit, but blood and incisions have not entered my comfort circle with the barf yet. Still no nursing career in my future.  

As I mentioned before, there is still some of the mass left over.  To remove that, Matt will have to surgery from underneath the muscles or schlerotherapy (injecting fluid to shrink it).  Since his tumor was in hundreds of little pieces (microcsytic), he wasn't able to have the schlerotherapy before, but now its an option since its smaller.  There is a very good chance part of the mass could grow back, to what degree we don't know.  Since so much has been removed, his post surgical cheek (without the swelling) is pretty flat.  They were able to put some fat in there, again we will have to wait to see if additional fat is needed (can I be a donor??)  to plump it back to normal.  The surgeon says that the incision under his eye should heal with hardly a trace, the other one will be visible but somewhat camouflaged in the natural occurring crease. 

We return Monday to the surgeon for a check.  Matt could sure use all your prayers for healing, for the mass to stop growing and that his bandages would be removed painlessly as possibly.  I am hanging on to lots of hope that there will amazing results and miracles in the months and years to come and that God will be using all of this for great things that we can't just see yet.  

Out of surgery

Matt out of surgery around 2:00 pm.  Plastics report was that procedure was "more than perfect".  About 70% of the tumor was removed and there doesn't appear to be any damage to his smile, muscles or nerves.  At this point we are still waiting to go back and see him.  He still may need some minor cosmetic procedures in the future.  They think he should be able to come home tomorrow.  God is good.    

Off to surgery

Matt went back to anesthia around 7:45 am and the actual surgery started an hour later.  He was really smiley this morning and actually very peaceful.  He knew he was having his cheek worked on (as was his monkey curious George ).  He had his whole collection of monkeys with him and really enjoyed playing with some of the new  toys we packed (surgery has to have some perks!!)    We definitely feel covered in prayer.  As I woke up this morning to get ready and finished packing our bags for our stay - I was definitely reminded of 9 months ago.  We were packing our bags for china and up at the crack of dawn - excited and not so sure of what was going to be in store for us all.  Such a similar feeling today.  Praying for the best possible results, but having to trust God to care for all the details no matter what. 

 Its hard to think about the scarring that Matt will have and very hard that this is his to carry.  Last week we had some pictures taken of Matt.  As I looked at the proofs, I mentioned to the photographer that you couldn't even see his present scar in the picture.  I looked again, and yes it was visible.  But boy can that boy take some cute pictures!  After awhile, I think I  just forget it's there and just look past it. Hope that's the same for everyone else, too. Even though they are his scars are his to carry, they will be his to share, too.  I am praying it includes a story of great hope and grace.  A story of how God has been at work in his life from the time he was formed and brought him home across the ocean.  How God took what made him an orphan and used the very same thing to make him a treasured son.  

Senior Night - Last Home Game

Shelby had her last home football game this past weekend, sniff sniff.  Senior year is going to be rough on this momma.  I am pretty sure it was just a few  a few years ago that Jeff and I were band, wasn't it?? Shelby helped to write and plan the senior band show which was spy themed.  It was nice for the kids to finally just have fun at their half time show since they are a competition band for the rest of the marching season.   This past year, Shelby got to be Co-section leader and a squad leader for the trombone section. This really is a nice group of kids and so proud of Shelby being a part of the band for the past 4 years.  There were 5 seniors in the trombone section, Shelby being the lone girl. She is off to State Band Competition next month and to  Phoenix after Christmas to march in the Fiesta Bowl Parade.  People kept warning me how busy the kids are their senior year, she sure is and it's going by in a flash!

                                                  Senior Band Members

                       We are getting good at this walking across the field stuff...

   Love this!! One of the seniors is named Matt, too.  Shhh don't tell Matthew, he thinks it was for him ;)

                                                I always knew she could dance!

                                I never knew Austin Powers could play the trumpet