Friday, August 26, 2016

Time for an Update ...

Hi Friends ...
I'm sure I always say this, but "WOW! ... another summer has come and gone and it went way too fast!"
This summer has been a blur, each day just fading into the next.
We continue to be busy and are just trying to get by and get through ... one day at a time.

We have had a few ups and downs with Rees.  He really continues to be a medical challenge.  We recently took him into the Emergency Room when we feared he was going to get dehydrated due to vomiting for two days.  There was a day when I took both boys to get the next immunization on the schedule and one of them was for Hepatitis A.  Strangley, not even fifteen minutes after arriving home from the doctor's office, Rees began vomiting ... like out of nowhere.  Coincidence?

We were unsure but did note that nausea and vomiting can be a reaction to the vaccine.  This went on for two days.  He couldn't eat a thing!  Strangely, he had no fever or any other symptom.  So, we contacted the doctor's office and they suggested that we bring him in to the urgent care department as it was after normal business hours.

Okay ... so, this little guy has been with us for nine months now.  I am WELL PAST seeing the physical defect that is GLARING to a stranger.  And so sometimes, I am off-guard and taken back when I see the reactions of some people as they encounter my son for the first time.  The urgent care nurse literally ONLY took Rees' temperature and asked a few questions.  I could see that she was uncomfortable.  Other mama's of children with a visible special need ... you know what I'm talking about.  She left the room and came back in to say that she consulted with the providers and they felt that he should be taken to the Emergency Room.

A very nice lady came and said that Rees needed to be wheeled over to the Emergency Room.  They wanted Baba to hold on to him so he wouldn't fall out of the chair.  I think Baba enjoyed the ride more than Rees.

Brynn and Jonah tried to be supportive but really they were just happy that they got to watch TV, which is apparently the highlight of my childrens' medical dramas.

The HUGE difference between our family's normal medical provider and Children's Hospital became SO APPARENT to me during this visit.  We are not at all unhappy with how we or Rees were treated but there was a definite difference.  The staff took one look at Rees and it was almost as if they didn't know what to do with him.  I'm sure there were a million questions running through their minds.

It all turned out okay.  Rees didn't seem to have anything severe and one round of Zofran seemed to be enough to allow us to leave the hospital after four hours.  No IV.  No Labs.  Lots of TV and stickers.  

More recently, Rees has had a few more issues.  I'm telling you, he is keeping us on our toes.  For about a month now, he has been "spitting" stitches.  I know that sounds weird but there's no other way to put it.  That's the actual terminology, ... well, okay ... more technically, "suture spit".  

A "suture spit" is essentially where the body's tissue rejects a suture (or stitch) that is meant to be absorbed over time.  So, he has been "spitting" stitches, as I said, for about a month, up to three at a time.  Last week, all of a sudden, he developed a hard, circular lump to the side of one of the sites that stitches were in process of being "spit" out.  Do you love the terminology??

Anyway, the area was quite red and the lump seemed to get larger in the period of a day.  He also had some puss oozing from the areas where the stitches were poking through the skin's surface.  So, I took a photo and sent it off to the doctor.  I am actually pleased to report that in this particular scenario, the doctors reacted more panicky that I did!  Ha-Ha!!  That's a switch - see??  I am learning and growing!!  Anyway, they wanted me to bring him in right away and then come in every other day for six days.  Well, ... I said "NO!"
Really I did!  Can you believe it?

There's been so much going on and so many appointments and so much rearranging of my work schedule ... AND ... we had appointments for both boys in two days time.  I offered to bring Rees by on that day (since we'd already be there for other appointments).  **Disclaimer: Rees did not have a fever and I did not believe this incident to be even slightly similar to his complicated episodes of earlier this year.  I did tell the doctors that I would bring him in immediately if there were any drastic changes.**  

So, the doctors saw Rees a few days later and it was as was suspected.  His tissue was progressively reacting to the suture-spitting process.  One of the doctors even poked, prodded and attempted to "SQUEEZE" fluid from the openings along the incision where the stitches were coming through.  

However, the next day, ... due to all that prodding and squeezing, Rees had blood pooling under the skin.  So, I cleaned the areas with peroxide, which drew out some of the blood.  Then I applied some antibotic ointment and a band-aid to protect the skin.  The next morning, when I took the band-aid off ... this is what it looked like ... EEeeWWWWW!!

BUT!!!  the sutures were FULLY EXPOSED!!  
This was both EXCITING and NAUSEATING!
You can see in the photo below the sutures poking through in a few places.  
I told Rees to hold REALLY still and I got out my very sharp tweezers and scissors and I pulled and snipped as much as I could of those vicryl sutures.

I was so excited!!
MOST of them came out CLEAN and EASY!

Rees does still have some scabbing and healing occurring in the three spots along the incision but we're hoping that the suture spitting is DONE now!!

Then there's Jonah!
Oh yes, ... we can't have one without the other.  
Yesterday morning, Jonah woke up and came to me, his mouth covered in blood.  Alarming ... YES!!!
I couldn't believe it.  I asked him, "WHAT HAPPENED?"  
He, of course, didn't know since he had just woken up ... but it was beyond me that he had slept through "whatever" had caused that to happen.
I cleaned off the blood and had him rinse his mouth out so that I could try to see where the blood was coming from.  I soon discovered that the wire for the braces on his top teeth had broken free from the teeth on one side.  Because Jonah has so many loose or non-usable teeth on top (at the moment), the wire was anchored and only attached to four of his teeth, two of those four were loose.  The wire must have been brushing and poking against his gums, cheeks lips ... hence all the blood.  

So, I quickly contacted the orthodontist and let them know that I need to bring Jonah in right away.  They agreed but explained that we would have to be squeezed in between other already scheduled appointments.  Wwhen we got there, we waited a very long time ... but finally they called Jonah back.  

They removed the wire right away and I expressed my concern for all of Jonah's loose teeth as the teeth have been in conflict with the appliances.  I asked about keeping the wire off for a bit to give us some "free" wiggle room for the teeth that were loose.  The tech said she'd check on that with the Orthodontist and she'd be right back.  Well, while she stepped away, ... I took a tissue and asked Jonah if I could wiggle his tooth.  He was concerned because he thought it would hurt but I said I just wanted to "feel" it.  So, I did feel it ... and then I just gave it a little tug and it came right out.  

Jonah was surprised ... and impressed ... mostly with himself because he didn't feel it and he didn't cry.  When the Tech came back, the Orthodontist was with her and I said, "Okay, ... one down ... one to go."  I said that because the two teeth (in question) were the biggest culprits.  Even though, I had already taken out one of Jonah's teeth with no issue, he was still nervous about his other teeth.  The Orthodontist said she'd just take a look and she used some topical anesthetic to help her see the tooth a little better.  She asked Jonah if he was sure he didn't want her to pull it out but Jonah put his tongue to the spot that the tooth had occupied and then he said, "Where is it??"  

He was so impressed with himself as he said, "Two teeth, ... Jonah no cry!"
Yay!!!  Two teeth down ... a few more to go!  

So, although, we continue to have medical issues, they've been relatively minor and we are very thankful (Thank-YOU, Jesus!!) that we've been able to get through them without any major upsets or complications.  

Last night, it was the open house for the Elementary School.  Both Jonah and Rees were SUPER EXCITED to go to school to meet their new teachers and bring all their school supplies.  Well, when we got there and we entered the building, ... they clammed up!  They suddenly got shy and quiet and did not appear to be excited at all.  We know this will pass after the first day.  They did give me smiles when I wanted to take photos!!  That's all that matters, right?!

It was a little disappointing that Brynn, who's going into 5th grade, didn't have the fun classroom and locker decorations that the lower grades had ... BUT ... it did give us the opportunity to tell Brynn that she could decorate her locker on her own, inside and out, and we'll have a little shopping trip to find some fun things to organize and decorate.

Our big "Dumpling", Molly, is going into her first year in High School!!  Oh My!!  
Not even sure how that happened ... oh, how I wish that time would not move so quickly.  Today, the incoming Freshman were invited to attend a special orientation at the high school and they were linked with Juniors and Seniors who spent time with them, prepared fun activities for them, showed them around the school, and gave them valuable information for the new adventure that awaits them at High School.  I still can't believe, though, that she's not 5 years old anymore ... and how much has happened since we brought her home from China!  I'm AMAZED that in October it will be TEN YEARS since she became our precious daughter!

Only 10 more days until the new school year!!  
But until then, we should have a few more things to share with you ... stay tuned because Jonah and Rees are about to experience their very first County Fair!!

Thursday, August 11, 2016

Hi Friends!  I realize it has been a while since I have updated but, as you can imagine, (hopefully after reading my last post) we continue to deal with a lot of things.  I am still in the midst of the famine.  

**I would like to suggest to you (for those of you who continue to check back for updates and new developments) that you sign-up for automatic email updates.  You can do this by entering your email address in the left column of the blog, beneath the various photos of our children.  There is a space that reads: "Follow our journey by email - get automatic updates."  Enter your email address and then you will receive an email asking you to confirm your sign-up request.   You can also request to be on my manual e-mail list
 by sending me an email at**

Jonah has healed quite well from his distractor removal in late March.  He continues to see the surgeon for periodic follow-ups as well as the Orthodontist on a regular basis, which up until last week was weekly.  I am so pleased that now his appointments will be bi-weekly for the next month and then hopefully after that will be down to once a month for a while.  Jonah also now sees a speech therapist on a weekly basis.  Fortunately, he really likes the therapist and the sessions go by too quickly in his opinion.  He enjoys working on the various tasks she gives to him but overall, Jonah still isn’t able to speak very well.  We find that it is more difficult to understand him after everything that has been done to him.  But he puts forth good effort in trying to speak.  He knows exactly what he's saying and his comprehension is excellent ... so we'll just keep working at it.

Rees continues to be followed by the surgeon as well and now does not need to return until the end of September.  He will have his follow-up with the neurosurgeon next week, which I am anxious for because I’d like to discuss the fact that the CSF leak continues.  He is scheduled for more surgery in late October and at this point the “plan of attack” for what will actually occur during the surgery is up in the air.  He continues to baffle the doctors but we are definitely happy that he is hanging in there and doing well for the most part. 

The boys like to hide from Dr. Denny before he comes in to each appointment.  They do it every time now and they think they are just so clever.  

Both boys are VERY EXCITED for school to begin and they don’t seem to understand why there have been so many days off of school. Each day they ask if it's a school day and I tell them "not today."  Jonah will then ask, "tomorrow?"  It's wonderful that they are so eager to go to school.  Here where we live, the kids do not go back to school until the day after Labor Day.

I hope to provide a better update in the future and will hopefully be able to share more ... thanks for hanging in there with us.  

Friday, July 15, 2016

Love you more ...

I keep trying to come to this place to write about you and to honor you with my words.  Words used to be so easy for me, effortless creativity and emotion spilling from me like a refreshing waterfall.  But it’s so hard to make the words come now. 
Each day since you left has come with a different emotion; each day develops in me new thoughts and feelings that I find that what I want to say … well, it’s constantly changing.

You always said I was so mature … and wise beyond my years … but right now, more than ever … it’s so hard to be a grown-up when all I want to do is be your little girl again.  Two weeks ago today … it was the last time I saw you at your home, in your room, lying in your bed.  That day you sat more upright than any other day that week and I thought you actually looked better.  Looking backwards on that day, now I can see those signs I was blinded to that showed your parting was imminent.  Though I knew the process had begun, it wasn’t abrupt or shocking; getting to that point seemed to drag on for so long that certainty was vague when it finally arrived. 

I stood there, silently broken … hoping for redemption … but doubting it would come … and all the words I wanted to say were absent..  Deep down, I had already let you go because you no longer wanted to stay.    I had fought it my whole life and in the end I didn’t want there to be a fight … I wanted there to be painlessness and comfort and peace and for my part I willed for that to be given to you.   There’s no shame in the surrender.

But now I wish I could rearrange the sequences and edit the scenes.  Now I long for a different ending … except for the part when I was leaving and I told you “I love you” as I kissed your forehead and you said, “love you more”.  

Saturday, July 9, 2016

... I don't feel it's right for me to post about where we are today without posting where we've been for the last six days.  And yet, I don't really know how to do this post.  There's so many things going through my mind and so many emotions that are being stirred up within me.

On Sunday, July 3rd, ... my mother, my dad's wife, and my children's grandma passed away.  To me, it was not entirely sudden and unexpected, but regretful, unsettling and disheartening all the same.  I will work towards honoring my mother with a proper post but for now, I am merely just acknowledging and affirming that I am not ignoring what has happened.  It is tremendously difficult having to keep moving forward while really just wanting to remain in that space between sleep and awake, where memories live.

Our whole family has been together for the last few days and because Rees' next surgery had already been scheduled for several months, EVERYONE came along to the hospital for the event.  It was a LONG day but it was SO NICE to have my dad and my brothers and sisters with us as Rees endured the surgery.

Rees was pretty calm and happy.  He did not seem to be anxious at all ... Praise the LORD!

He took the "goofy juice" well ... 

... despite it tasting horrible!!

The Pre-Op staff allowed for our family members to come in a couple at a time to be with Rees for a bit before he went into surgery.

The anesthesiologist was nice enough to let Rees look at her phone.  Thankfully, he gave it back to her when she asked.

Several on the Plastics Team came in to see Rees and check him over before taking him down to surgery.  He did really well with all of this.  We found out that there were multiple members of Anesthesia and the OR and Recovery who recognized Rees' name on the schedule and even tried to swap with staff in order to be a part of his OR Team.  (no one was willing to switch; they actually fight over him!)

So, the plan for the surgery was to re-section the nasal tumor to remove any residual tumor and then to replace the bone graft that was sitting in-wait on the side of Rees' skull.  Additionally, the surgeon would clean up the scar tissue and damaged skin resulting from Rees' previous surgeries.

Below you can see how Rees' bones looked after his first surgery.  The nasal bone graft is secure and intact.

After the surgery to remove the bone graft due to all the complications, it was tucked under his scalp on the right side of the skull to save for "later".  About a month later, another CT revealed that Rees' bone was disintegrating.

To begin Rees' surgery yesterday, the doctor opened a small section (only about an inch or slightly more) along the former incision so that the bone graft could be removed.  Rees began hemorrhaging immediately and he lost over two units of blood, which is ridiculous for the size of the incision that was made.  He ended up needing an urgent blood transfusion to replace the blood he lost.
In making the incision along the dorsal nasal segment of Rees' nose, it was quickly discovered that the CSF (cerebral spinal fluid) leak is still occurring as there was fluid everywhere upon opening his tissue, of which has been determined to be of very poor quality.  The bone graft literally broke in the surgeon's hands making it non-viable and then he decided to hand-stitch the opening himself, which challenged him because of the spongy nature of the tissue.  The surgeon's words were, "I've been trumped on all accords!"

So basically we did not progress and we are unsure of the next steps.  Rees stayed in the hospital for two nights as we all watched for negative reactions or further complications.  Thankfully, so far, no further complications have occurred. 

We will eventually look into what seems to be the potential that Rees has some sort of a collagen disorder and we are also considering genetic testing.  At this point, we have been told that there are so many unknowns and uncontrollable variables that Rees may never have a nose.

So, that's it for the moment.  He is, of course, a trooper, ... as always ... and he's happy to be back home.

Friday, July 8, 2016

Thursday, June 30, 2016

The Changes in Jonah and Rees ... 8 Months Home

- When we met him he was selfish and stubborn.  He would throw a fit at the slightest incident and cry like his hand was cut off if he didn't get every balloon he saw.  He was a tough kid to like in the beginning.  
- He likes to be first at everything though he is reluctantly learning others get to be first sometimes too.  
- He is a really good eater!  The only food he does not like is macaroni and cheese - can you believe that?  At first, eating for him was a competition that made him very anxious.  When he would see at particular food being eaten up by other family members, he would become upset and shovel his food so that his plate could be replenished.  He can eat more than almost every family member in our household ... BUT ... he is a much calmer eater now.  He knows there is always food available to him.
 - He is a very smart boy!  He has amazing survival skills that we have picked up on and which have helped us to understand him better. 
 - He is motivated by positive response / reaction.  He just beams when he knows that we are pleased with him and then he tries to do more of what pleases us.
 - He is a gentle and sensitive boy most of the time but he can sometimes be a bully, which likely stems from his self-esteem.  He can get very excited and really enjoy himself but he can also break out into a fit of terrible crying, seemingly for no reason.  When he's sad or upset, he's REALLY sad or upset!  But when he's happy, he's REALLY HAPPY!  He is so brave and yet, he lives in fear of his next medical procedure. 
- The first meaningful word we realized he could read (besides his name and Rees' name) was "Apple".  
-   He's been on Summer Vacation for a couple of weeks now, which is something new to him.  Each day when I come home from work, he runs out the door to meet me as I get out of my vehicle.  He's excited to see me and he wraps his arms around my waist and says "Jonah love Mama".  
 - He's still crazy about balloons and he wants as many as we will allow.  What he appreciates most about having surgery or blood draws or CT scans  ... is the BALLOONS; he's come to expect that and that's okay!
- Jonah is creative and curious and he loves to learn.  We have seen that he has a great capacity to learn and despite his limitations, he is so smart and he is absorbing so much information and processing quickly.  He has surprised us several times with his ability to complete a task before being given the instructions and even though he can't communicate very well, he is able to figure out how something should be spelled based on what he knows of the sounds.

If he thinks I’m frustrated or if one of the other children are ‘in trouble’, he comes to me to give me a hug and super big smile with his fingers up by his ears ... it looks like this.
- He repeats things over and over, like plans for the day or who's picking him up or what is going to happen at an appointment ... we think it is a way that he finds comfort or maybe helps him to push out the fear of a situation.  
He is so quick to help (make dinner, set the table, feed the dogs, clear the table)
- For months he sat as far away from me as possible and preferred only to sit with Baba in Baba's chair during movie night.  Now, he asks to sit between Mama and Baba on the couch.  
- For months, he would barely speak to anyone outside our immediate family.  While hospitalized, he would never make eye contact and would only do small, quick nods for either "yes" or "no".  A switch was flipped in this boy (like turning on a light in absolute darkness, ...swift and dramatic) and the transformation has been amazing to witness!! He has likely shocked his doctors the most.  One day he barely acknowledged Dr. Denny's existence and the next day, Rees basically treated him like he was his very best friend in the world.  (the excitement in Dr. Denny's eyes at Rees' change was priceless and rewarding!)  Now, out of curiosity, he will say to a complete stranger, "What you doing?"  And he's entered the world of "wonder" like a toddler and asks "Why?" ... ALL.THE.TIME.

I'll never forget the first word I heard him say, as he came running up to me when he and Jonah were first brought to us, ...was "Mama".
 - He is a tremendous "worker bee".  He doesn't give it a second thought to jump in and help out.  He is an amazing kid who doesn't need to be told twice.
 - He is no longer anti-social but he does keep to himself and prefers more to watch and listen as opposed to "jump on the bandwagon" or the "tirade train".  (It somewhat annoys our other dumplings, which I find humorous) 

These boys have had so much happen to them in their short little lives ... and SO MUCH just in the last eight months.  They are resilient and strong and they have handled the experiences of these months far better than I have.  

I know that there are adoptive parents who shy away from "choosing" a child with severe facial differences ... the same way I shy away from a child with ... say, ... limb differences or heart defects.  But I'm sure the parents who do choose the children with limb differences and heart defects would say the same thing that I am about to say ... 

... my life, though currently exhausting and stretching, is far more enriched with the presence of these broken, yet beautiful lives.  When you look past the defects and the scars, there is this tiny person with the largest personality you never dreamed could even be possible.  
We aim to love them and to help them and ... to heal them ... YET, we find that they have loved us ... and helped us ... and by God's grace, ... they have healed US!

It is a revelation that is as sweet as my favorite chocolate 
and now that I've tasted it ... oh, how I cringe at the thought of my life without it. 

Saturday, June 25, 2016

Oh Happy Day!!

We are SO VERY EXCITED to announce that Jonah's mandibular distraction devices are OFF!!!

This was the last photo taken of Jonah with his distractors still on.  I told him that the next photo I took of him, they'd be GONE!

Well, while I was really excited the devices were coming off, ... Jonah was very apprehensive and he broke down multiple times in the hours prior to his surgery.  His anticipation is his worst enemy.  His fits of crying were so intense that the pre-Op staff was concerned and some were even quite alarmed.  Jonah was more distressed about having the distractors removed than he was when he went to have them placed.  As I have said several times, it has been a rough three months for this boy (and his parents) and he has grown weary of all the pulling, placing, poking, and prodding that he has had to endure.  

Last week, he needed a simple x-ray and he screamed uncontrollably so I had to hold him down just so they could get the picture of his jaw bones.  Just a couple days ago, he needed to have pictures and x-rays taken and his palate expander removed for the "before-surgery" records and he created such a commotion with his crying during the removal of the expander that we had to be escorted to another area of the office where the doors could be sealed off.  The more he goes through, the more we see his struggles and we need to find some better ways to address his feelings about all of this.  He's gone through so much in such a short time and he's just so sensitive.

So, here it is ... the first post-distractor photo.   

Yes, he looks like he's sleeping very peacefully here ... but let me tell you, he was not happy when he woke up in "recovery".  Jonah, again, had a terrible fit of crying and especially became distressed when he saw the IV in his arm.  I must say, ... there are just some times when morphine is a blessing.  Of course, the recovery room was full of other children at the time of Jonah's distress and several of them were frightened.  The nurse was only too eager to administer the small dose to calm and quiet him. 

As promised, we got Jonah a couple of really BIG balloons. 

All in all, I am very pleased ... ecstatic even ... that the distractors are off.  But that's not all that was done during Jonah's surgery.   He also had a pharyngeal flap done.  "pharyngeal flap is a surgical procedure to correct or enhance the quality of your child's speech. Muscle tissue is transferred from the back of the throat or pharynx to the palate in order to narrow the nasal opening."  Dr. Denny said that this was the longest flap he has ever constructed at 32mm and he wasn't even sure that he would be able to do it.  Jonah's case (along with Rees') continues to be one of the most unique he's had.  

Dr. Denny mentioned, when he came to give us the update on Jonah's surgery, that he was considering doing a "fat"-graft that would be placed in the areas of Jonah's face where he now has scars as a result of the surgeons with Love Without Boundaries closing the large openings related to his facial cleft. A fat-graft would fill in and soften indent/creases in Jonah's face further enhancing a more normal appearance.  

Jonah was able to go home after a one-night stay in the hospital.  He's happy to be home and after a full day/night home, his spirits are much higher and he's eating better and talking more.  We can already tell a few differences with his speech.  While he has a long way to go, his voice seems a bit stronger when speaking certain words and he can slightly make certain sounds that he absolutely could NOT do before.

Thank-You, LORD, for getting us through the next step!  Thank-You, LORD ... as I watch Jonah skip through the house and snap his fingers at me just now, that he is able to bounce back and show signs of a positive recovery.  Thank-You, LORD, ...