On the road to recovery

Matthew's drain is out and he is doing much better.  The drain was really crazy - it entered his head behind his ear and went under his skin across his cheek.   They cut the stitches holding it in place and pulled it put like a piece of spaghetti when they removed it.  EEeewwww! Sorry tmi.... His cheek is still a little swollen and bruised, but nothing can stop him for long.  All the doctors and nurses have commented how well he has been taking all the procedures.  At home,  we have now been faced with trying to get all the adhesive off of his body from having various monitors and wounds covered. That he doesn't take well! Two years olds love to sit still while you try to take off adhesive, pull off old gross bandaids and put new ones on, too.   How come bandaids never stay on when you want them too and never come off when you need them, too?

I had once thought (for about 5 seconds)I could have been a nurse.  Heck, isn't audiology sort of in the medical field??? Yeah right! Anyway,  I know for sure now that I could not have done it.  However I will do anything for my son and continue to do so, but drains and incisions are not my thing at all.  His incision is looking better and since we can now tape it back up - it's even a whole lot better for me.  

Looks like we have a tentative surgery scheduled for the big excision of the entire mass the second week in October.  He is scheduled for  a 5 hour spot at this point and we may be adding a laser surgery for the epidermal nevus on his belly to go with it.  I will be very grateful to have my sweet little guy done being poked, cut and prodded.  

Could it really be 6 months?

 




























This precious boy has been a Starkey for half a year!! I am not sure who's life has changed more - his or ours? We have definitely have had some challenging and hard moments but I can't begin to express the pure joy that we have experienced because of Matthew.  Our whole family is just simply blessed by him.  

 

He is starting to put together 2 word

phrases/sentences

The most nimble fingers I have ever seen.

Feeds himself with spoon and fork - loves napkins!

Puts on his on his own shoes and socks.

Mr take charge of everything!

Starting to count - sometimes to 6

Names every color blue!

Loves to be outside

Wants everyone not to wear shoes if he isn't 

Refers to himself as Matt or me

Knows he is from China

And if I wasn't still sleep deprived I could come up with a 1000 more.  Love love love this sweet boy! Thank you for shaking up and turning our world upside down.  You are such a gift to us. 

Giving his momma gray hair

Matthew started to have a lot of swelling in his cheek Thursday.  It just kept getting bigger and bigger to the point his eye was swollen shut and his cheek was rock hard. The surgeon's office told us to come back in.   As we travelled up there he started vomiting.   Thank goodness Shelby tagged along with us to take care of him while I drove.  The doctor immediately said he needed to go back into surgery to reopen his incision and drain it.  Our hearts sank. We were sent back over to the surgery center and he knew right away where he was.  He cried out to "go go go".  I called Jeff and he raced up to the hospital to meet us there.  Poor little guy had to go back to anesthesia without us this time, there wasn't a dry eye among us seeing him wheeled away.  The surgeon later told informed us, after they made it back there, he went and picked him and held him till he settled down.  

The surgery went well and he was glad to see us afterwards. There appears to have been a bleed in the tissue of his cheek.  When it was time to be taken back to his room,  Matthew was not too happy to be wheeled anywhere, since last time he was wheeled away without us.  The attendant was very sweet and offered to let me ride with him on the bed,  he even included car sound effects the whole way there.  The perfect solution to settle his scared little heart.    I ended up spending the night in the hospital with him.  Our stay went better then expected and I became quite talented at keeping a two year old in bed with so many wires and tubes.  The hospital certainly wasn't a place of rest though with all the beeps, whirs, vital checks, crying children and helicopters buzzing in and out though, but overall a good stay and with very caring staff.

They discharged us on late Friday morning, but the drain is going to be left in place through Monday.  Good news though - the tissue they removed came back as being lymphatic and not cancerous! The large birthmark on his belly turned out to be an epidermal nevus - which we need to go back to the dermatologist to see how to handle and possibly  get surgically removed.  This son of mine is really having me expand my comfort zone - travelling to China, spending the night in the hospital, surgery, changing diapers again and now emptying surgical drains -now I am a little worried to see what's next!  Regardless I am blessed that I get to be a part of 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. 

Next Step

Matthew has a surgery appointment set for a biopsy of his cheek and a odd birthmark on his stomach next week. His new team of doctors isn't convinced that his cheek is vascular or lymphatic. Since they are not sure, they want to make sure they know what they are cutting into to to give them a better treatment plan.This team also believes the cysts/tumors innervate his bones, muscles and nerves. They do think a large part of the mass is well defined and will be able to be easily "scooped out", it's just that other part that won't,  that will be difficult. I am trying to deal with one thing at a time and not to think of what that may mean for his future. I will have to continue to rely on the one who has taken care of all the details so far to get us over this next hurdle.  We have loved both surgeons that we have talked to, but we a larger sense of peace with the team approach at the second opinion. They seem to be looking at Matthew as a bigger picture and its great to hear the opinion of several doctors all standing in the same room together.  Most likely his removal surgery will still occur before the end of the year.

Matthew's nose is at the top of this picture and the MRI cross section is taken as if looking down on top of his head. 

I have fallen in love with Matt's little face and smooshy cheek.  I am not all together ready for it to start changing, he is already perfect.  The first time I ever saw Matthew's picture, I wasn't all together ready to say I could handle his special need though.  Now mind you the picture was small and it wasn't picture that actually captured the real him.  So I actually avoided clicking on his link for a little while after I first saw it.  I was a little scared, I wasn't sure if I could "handle" that need.  What if kids made fun of him at school?  It didnt initially occur to me of what if kids did make fun of him at school and he didnt have a momma and daddy to make it all better?? For some reason, I just felt this inner nudging to look a little closer and I clicked on his picture.  I am so glad I did... I immediately saw the face of my son looking back at me.  I read the details about him and knew I was reading about my child.    I went upstairs, got on my knees and prayed.  The rest is history. 

 

Its bittersweet to know that the same cheek that made him in an orphan, also made him our son.   Isn'it amazing to see how God turns all of our ashes into beauty?  I catch myself just staring for long moments at Matthew, very much in love and awe.  It's hard to still believe he is really here. That he really is our son.  That he has beginning of almost 2 years that doesn't include Jeff and I.  That he has a set of birth parents that loved him and are thinking of him.  That for someone who is just 2 years old, he sure has been through so much that a 2 year old shouldn't have to go through.  That he even though he doesn't share our DNA, he sures acts like he does.  That a once scared little chinese boy is a sweet, goofy, loving chinese American boy.  

B is home!!

B (as we fondly call Shelby since Matthew can't say Shelby) is home!! I have decided that I am done being away from my children for a llooonnnnggggg time (if I could just keep them from growing up!). She did have an amazing time in Guatemala. They spent a large part of their week building another house for the orphanage and playing with the all children. We have loved hearing about all her stories and I hope to snag some of the pictures from her camera. In the meantime, I snagged a few from facebook from her trip.

On their way!

They made it to Houston and are now off to Guatemala City!