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

Jonah:

- 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.

Rees:

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. 

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.  "A 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, ... 

School's Out!!

School's Out!!  

Can you believe it?

I think every year seems to go faster and faster ... 

... What great teachers they all had this year! Each of the Littles came home with special momentos from their teacher.

This girl finished middle school STRONG with multiple achievements! I know we don't always make a big deal about such things, Mollybug, but we are Super Proud of the very special, talented, beautiful daughter that God saw fit to bless us with. We are truly honored to be your parents!!!

Next year ... she moves on to High School!!  

No, ... I just cannot believe it! 

Brynn was especially emotional on her last day ... when I went to pick up the kids from school, she was in a red-hot, sticky mess of tears.  I thought something had happened to her and I was about to roll out my 'dukes' but then she told me the reason she was crying was because she was going to miss her teacher  too much!!  Awe ... this year provided Brynn with her most favorite teacher yet! It really is wonderful to see a child really admire and grow positively because of a teacher.  

Only one more year of elementary school for this girl!! 

Very proud of how far these little guys have come! So thankful for the patience, attention, and kindness of their teacher and also the aides that worked with them.  It certainly was a challenge in the beginning, ... I know this ... Jonah and Rees walked into that school unaccustomed to ... well ... everything!  There were lots of tantrums and tears and sometimes even outright refusal to complete a task.  They went to school in January still mostly only speaking Chinese and now they barely remember their native language.  

They were exposed to so many different things, they experienced such a variety of emotions, and they were encouraged to form multiple relationships with children and adults.  

It was so great to see how much of their learning was "hand-ON".

They worked really hard and they've grown so much!! 

We're excited to see how much more they will progress over the summer as we continue building on what they've learned and experienced.  Jonah will move on to First Grade but Rees will begin next year in Kindergarten because he missed so much school after all of his surgeries and hospitalizations.  It will be good for the boys to be in separate grades, ... classes for sure.  As close as they are, we also want to encourage them to realize that they are separate boys and they don't have to do everything and be everything THE SAME.

Jonah's Progress ...

Jonah had a speech evaluation last week.  I knew it was going to be a long appointment but I didn't really think much of it, especially since I wasn't going to be taking him to the appointment.  This was going to be Baba-Jonah time and ... NOW ... I sure am glad that it was!!

So, we didn't know this but Dr. Denny wanted a scope done to determine the length and structure of Jonah's palate.  So, they basically inserted a small tube (they call it a noodle) into his nostril and into the back of the nasal cavity.  There is a tiny video camera attached which allows them to measure and watch the function of the soft palate and pharyngeal walls.  They usually ask the child to say a few words, however, Jonah was not able to do this ... he was too busy crying hysterically.  They were able to tell, though, from the scope and from asking Jonah several questions before and after the scope that his palate is not long enough to allow him to formulate consonant and vowel sounds accordingly.

Jonah's upper palate is less than two inches long. That's it!  No kidding!!   Where most peoples uvula is at the very back of the throat, Jonah can touch his with his tongue.  I never gave it much thought before and really just take for granted my ability to speak but, very interestingly, the palate has a great deal to do with a person's ability to form the various sounds in verbal language. Jonah is physically UNABLE to make certain consonant sounds such as the "kuh" sound as in cookie or kite and the "guh" sound as in goat or glue; this is due to the deficiency of his palate.  Try it ... make the sound of the "K" or "G" (or both).  You will feel your palate touch with the back of your throat and tongue.  Because Jonah's palate is too short, he doesn't achieve the "touch" to make those sounds.

So, this week, at Jonah's appointment with Dr. Denny, it was confirmed that next week, when Jonah has his distraction devices removed, he will also have surgery to lengthen his palate.  At this point, we don't know exactly what this entails ... new territory again ... but we understand the necessity of the procedure.    

His most recent x-ray shows that his bone has regenerated and even though we still have A LOT to accomplish in regards to Jonah's care and therapy, we are super excited to have the distractors removed and that portion of his medical plan behind us.  We have been told that there is a possibility that he will require the distractors again at some point during his growth, however, we are choosing N-O-T ... NOT ... to think about that at this point.  This has been a rough THREE months and we are very glad to MOVE FORWARD W-I-T-H-O-U-T those clunky, uncomfortable, restricting little pests! 

So, pretty soon, this handsome guy will appear in photos with 50% less metal!  

HOORAY!!!

Be Still Fundraiser ... Take Two

Hey Everybody!  We're re-launching our t-shirt fundraiser!  We've had a lot of comments and compliments on the shirts and design; many have asked about how to get one ... so we're going to put it out there again to provide another opportunity.

Here's a few of our happy shirt owners!  You can be one too!  To read about the origin and inspiration of the design, you can click HERE.

I got a t-shirt AND a sweatshirt and I L-O-V-E them!!  

So go ahead ... the campaign will be open until June 24th and our proceeds will once again go into the fund that is for the medical expenses that Jonah and Rees are incurring.