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