Updates on Jonah and Rees

It's been just about a week since Jonah's surgery.  

For the most part, he is doing amazingly well!  We didn't really know what to expect for sure as this is new to us but we are so surprised that he really only seems to have slight discomfort and that is mainly when we are cleaning around the distractors and his incisions.  

Otherwise, he's been pretty comfortable and has even slept right on the distractors as he tends to sleep on his side.  The only thing that signals to us that this may be bothering him is that he's been whimpering and crying in his sleep since the surgery.  We assume he is having bad dreams but are unable to talk about this with Jonah as he doesn't know how to communicate this type of thing or those words yet.  In the meantime, we rub his head or back lightly and whisper that it's okay and he's a good boy.  We're keeping on eye on his incisions as they have been slightly reddened and 'oozy'.  So far nothing significant has occurred, for which we are thankful, but we were able to have his oral antibiotic refilled today as a precaution. 

The turning of the distractors began yesterday.  Jonah was seen at both the orthodontist's and the surgeon's office and the surgeon made the first turns.  Jonah was very apprehensive, however, he didn't even seem to feel the turning, which ultimately was a relief to him.  

The turning is done with the object shown in the photo below.

It's called a 'key' or 'driver'.

It has a small node on it's end that fits into a space (like a keyhole) located on the distractor.

Once the 'key' is in place, we just push downward until we see the next 'keyhole'.  Each movement is 1/4 of a millimeter and we make four movements to complete an entire rotation or one millimeter.  

By the end of the week, we might actually be able to notice a difference in Jonah's appearance.

The distractors and all the appliances inside his mouth have really caused him to take a step backwards in his ability to speak, eat and drink, and to swallow his saliva; it's really been a challenge for him but we know that it is only temporary.

You know, before the adoption of the boys, we anticipated that Jonah's medical needs were going to be highly complex and challenging.  We expected that Rees' medical situation was more severe than our daughters' but we went into all of it with the assurance of knowledge and experience.  

Well, the last ten weeks have been nowhere near what we expected and we continue to walk the path of uncertainty.   While Rees IS getting better, his healing is slow ... strangely slow ... and it is unpredictable.  

We are SO THANKFUL and RELIEVED that he no longer has THIS to deal with ...

I'll spare you the photos showing the half inch hole between his eyes and the bone coming through the skin ... but we're SO THANKFUL that has passed.

We're SO THANKFUL that the fluid that was building up and wreaking havoc on Rees' face has FINALLY seemed to stop! 

But what we are dealing with is that although the surgeons closed the hole, Rees' tissue and skin has essentially split open again, though not because of any holes but due to "granulation tissue."  The granulation tissue is new tissue that is being generated, which is actually good, but he is generating A LOT of it.  

He has really been quite the happy boy throughout all of this!  

He's such a trooper ... even when he's afraid! 

This is the most recent photo of the wound.  

The doctors do not know why it is taking so long to heal but they do say that the tissue is "healthy".  I always question this because it looks "icky" to me but they assure me that "meaty" is good.  And yes, ... "MEATY" is exactly what it looks like to me.  I clean it twice a day and have taken literally dozens of photos each week.  While the photos may appear to show what looks similar to a severe scrape, this wound is actually soft, spongy tissue.  It "gives way" as I clean it and pulls forward when I remove the dressings.  I will be overjoyed when it finally firms up and closes up!!

Yet, there are other issues that continue to arise with our sweet boy.

He had another CT scan on Monday to determine progress on the healing of his bone.  

To give you proper perspective, the next few photos will remind you and show you the progression of how his skull has changed over the last ten weeks.  

This was Rees' skull prior to the first surgery.

This was Rees' skull one week after the first surgery. 

This is what Rees' skull currently looks like.  

Unfortunately, there are more issues now.  

There is collapsing and disintegration of Rees' skull bones, which to me is hugely alarming, but to the surgeons, is not surprising.  

What??

Again, didn't see this coming ... we are unfamiliar with this situation ... and as it stands, it seems that we just have to wait it out for the time being.  

NOW THAT IS SOMETHING I AM NOT SURPRISED ABOUT!

I am including this view of Rees' skull as well.  

It gives another view of the changes in his bone but also you can see the nasal bone piece that they removed during his last surgery "and tucked away for safe keeping".  

Remember that?

Unfortunately, it is apparent that this piece of bone seems to be degenerating as well.   

Rees will need more surgery ... SOON ... but they need to wait for his wound to finish healing and close up.  They say that once that happens, they will add him to the surgery schedule.  

In the meantime, they plan to release both boys to go to school next week!

Now THAT really is GOOD NEWS!!!

Both will be restricted from gym class and recess due to the obvious risks but it will be so good for them to be back, especially Rees.  We'll be working on a new bandage type for the occasion over the next few days.  Wish us luck ... and please keep your prayers flowing!  

Jonah had a pretty rough night.  He was really restless and discontent, dozing here and there ... whimpering on and off ... heart rate escalating.  Oh, there's no chance of rest when the heart rate escalates.  The monotone rhythmic beeping turns to accelerated, needling distress signals impossible for me to ignore.

We got through the night and the morning didn't start off any better.  Our poor little Jonah was so nervous about moving or talking ... I mean, he barely wanted to blink even.  I told him we were going to sit him up so we could change his gown and clean him up and muttered "no."  He became so agitated and began crying inconsolably.  With the help of the nurse, we completed our task with him crying the entire time.  I took it one step further and made him get out of bed and sat with him on my lap in the chair until he cried himself dry.

After that, Jonah did really well!

He colored for a bit.

He ate some jello. 

He took a walk around the floor. 

Very impressive change of mood! 

Then he drank lots of juice and ate some scrambled eggs ... all things 

necessary during a hospital stay. 

Rees just hung out in my sleeping quarters watching Paw Patrol and acting like he owned the place. 

Our dear friend, Diane, came to visit Jonah and encourage us!

She brought Jonah a fun art project that he took to working on right away. 

Look, Diane!!

Thank-you so much!! 

Dr. Denny and his Team came to see Jonah in the early afternoon.  They said that they decided that they will not start the turning of his distractors until Monday when he is seen in the clinic.  Other than that, he said Jonah looked great and wished us a Happy Easter.  

With that, we were discharged from the hospital!!

Can you believe it??

I don't think Jonah could either ... he really has done such a great job and he doesn't even know it.  

We are so thankful to God for our successful and very short stay in the hospital this time around!  

Jonah's Surgery - Post Surgery

Hey Everyone!!  Jonah made it through his surgery just fine.  

The surgery went quite fast actually!  We were so surprised!

I didn't really know what to expect when we saw Jonah.  They said that they thought he might have to stay intubated for a while and the length of the surgery would depend on how things looked once they got "in there".  I had asked both sets of doctors to explain what the distractors would look like.  I had googled it (of course) but the orthodontic staff said that Jonah's devices would NOT look like the ones that I found online.  But guess what?  They really do!!

For the most part, Jonah is resting comfortably.  He does not seem to be in too much pain and he has been in and out of sleep.  He did have an emotional melt-down when he realized that Baba was getting ready to leave, which only made it more difficult for him to leave.  

Jonah cried really hard ... well, as hard as he could with his distractors and barely opened eyes.  When he cried, he caused himself to cough several times and by the sound of the coughs, his throat must be dry and sore.  That is likely to be expected.

He has since tried a few sips of apple juice and only one bite of applesauce and a few licks of a popsicle.  He's not quite ready to take on eating just yet and seemed slightly nauseaus.

Below is a photo of an x-ray that they took of Jonah once the distractors were in place.  

He has incisions on either of his face and the lower jaw was cut on both sides as well.  The distractors are placed with four very long, very sharp, but very small (diameter) rods.  These rods are essentially what will hold the distractors in place. 

Tomorrow, the distractors will begin the turning process.  Dr. Denny will come to check on Jonah and then he will make the first turn.  Each turn will move the jaw bone 1mm and the turning will take place about once a day for the next three weeks.

Stay tuned for more updates on Jonah!

We are so thankful for this 'uneventful' day and we just pray that Jonah stays comfortable through the night and will be able to eat and drink without getting sick.  Something I posted earlier today on our facebook group was the following ... wanted to also share it here.  

Jonah's surgery went well! He is in Case Finishing and will be taken to the ICU, possibly still intubated as a precautionary measure. It will be a while before we can see him. Dr. Denny is SO GREAT ... just want you all to know! We're here for Jonah and he has asked us about Rees and discussed his case even twice already (his team did too at various points this morning)! In consult a little while ago, after telling us that Jonah's surgery went well, he told us that it's going to be amazing to see the transformation in this kid, as well as Rees. We have these great kids ... We've been so blessed ... with extreme medical (almost mysterious) cases ... Rees' is so complex that his case has been brought to several medical conferences and is being classified as highly unique as their is virtually nothing in the medical literature about his medical condition. That's our Rees-y ... blazing a trail!! Jonah's case is highly complex too because the malformation didn't affect just one component but multiple physical parts and functions in his face and head. For both of them, Dr. Denny said that "none have come before them ... and none will come after." He genuinely cares about each one of our kids, despite the hundreds of patients he has had in his career. It matters to him how they feel, think, and see themselves ... and he works to not only improve their appearance and functionability but also their self-esteem. We don't know if Dr. Denny is a Christian, but God has blessed him with an amazing gift and we pray that God blesses him and reveals Himself in his life if he hasn't already.

Jonah's Surgery

As you know from my previous post, Jonah was getting pretty anxious as he knew the day of his surgery was quickly approaching.  After his melt-down and our subsequent conversation afterwards, he seemed to be doing better.  This morning when we woke him up, he seemed okay but after he changed into his clothes he planted his feet in the hallway and seemed to become a statue.  I am not sure what he was thinking but I assumed he was realizing that the moment had arrived and maybe he was trying to assess the possibility of making an escape.

Rees, wanting to assure his confidence for the 100th time, made the statement ... (AGAIN) ... that "Rees stay Grandma-Grandpa.  Jonah go hospital."

Well, ... THAT DID IT!

Jonah broke down in tears and labored sobbing.  He was inconsolable but Baba carried him around trying to comfort him as he gathered up the last of our things to take with us.

A dear friend came to help the other children start their day (Thank-you so much, Royce!!) and we were off!

Jonah cried for about ten minutes in the car.  I sat in the seat next to his and held onto him; he placed both his hands around mine as if to know for certain that it was there.  We stayed that way until we arrived at the hospital.

It is amazing to me that such a simple gesture has meant so much to both our boys but it was our intent that the gesture ... to let them know that we would be there to hold their hands ... would be a comfort to them ... to let them know "we are there." 

WE ARE SO THANKFUL THAT THEY HAVE TAKEN HOLD OF WHAT WE ARE ABLE TO GIVE. 

Once at the hospital, Jonah was very calm and very cooperative.

He even got quite playful with Baba ... giddy even ... and that was BEFORE the 'goofy juice'.

Mama was able to get in on the "giddy" too!

He's such a sweet boy!  He's been doing his best to learn and to grow and to acclimate ... it really is amazing how far he's come in only five months.  We are so proud of him and SO EXCITED to watch the unfolding of the plans that God has for him.

When he got the "goofy juice", he didn't make the YUCK face like we expected!

He didn't even get goofy ... sorry folks!  

He DID get even more calm, though ...

After getting the medicine but prior to taking him to the OR, Anesthesiology Staff came to give Jonah a special breathing treatment.

Due to the structure and size of Jonah's mouth and the very short length of his lower jaw, they are presented with several challenges in placing the breathing tube.  They put a medication in the tube which turns to vapor when the oxygen is run.  Jonah breathed this in for about five minutes.  He did so good ... taking deep breaths just like they asked.  The medication numbs the inside of his mouth and throat and also acts to depress the cough/gag reflex.  Also because the mask(s) don't fit his face exactly, they knew they would need to start his IV while he was still awake and run the anesthesia through the IV.  The team was very careful to take all these things into consideration before taking him to the Operating Room.  

This is how Jonah looked as they took him ... THANK-YOU LORD ... we needed this!!

He knows it's coming ... and he's nervous ...

He takes his hand and covers his mouth and nose (mimicking the anesthesia mask) and then rubs his eyes and says "Jonah cry."

The first time I saw this photo, I thought it was so beautiful.  I remember seeing it on the Love Without Boundaries blog and being so touched by the compassion of Dr. Clinch, the anesthesiologist, from Jonah's first surgery back in April 2015.  

I know I wasn't the only one.  On the Facebook page there were literally hundreds of comments and prayers posted for this little boy known as "Billy" and thankful words to Dr. Clinch who did her best to calm and comfort him.  I know that it calmed and comforted me to know that he was being cared for so tenderly.  I learned that she sang to Jonah to help him be calm ... she sang "Winnie the Pooh" as she said she did for her daughters when they were young.  

I just assumed that what Jonah felt was "calm and comfort" too because of the sincerity of Dr. Clinch's actions.  But today, for the first time, I realized that was not the case.  

I made a casual comment this afternoon about "when Jonah and Mama are in the hospital" and all of a sudden Jonah became very quiet and stone-faced.  His eyes began welling with tears.  I took him in my arms and sat down with him asking what was wrong while having a hunch what it was.  

I asked him if we should talk about his upcoming surgery and his reply was "no."  Then he said, "Jonah, no surgery."  I got out his scrapbook that I made him documenting his surgery last year and he didn't want to look at it.  I showed him the page with the photo of Dr. Clinch holding him and I said, "Do you remember her?  Wasn't she so nice to you?"  And he should his head and said, "No nice; Jonah cry."

And then he began to cry hard ... really, really hard.

It took quite a long time to calm him down.  He was quite the sobbing mess.

When he finally calmed down, we told him that we should talk about the surgery so he will know what's going to happen.   

Jonah pointed to himself in the group of photos from the 2015 Love Without Boundaries Cleft Exchange.

We talked about how his mouth was different before his first surgery.

And then as he pointed to the picture of him with the bandages on his face, we talked about how it became a bit easier for him to keep food in his mouth afterwards.

Even though he had been scared and it may have hurt a bit, the surgery helped him and this one would be the same. 

Even Rees got in on the conversation (as if to share "experience") ...

Just as we told Rees over and over, we told Jonah that we would be right there with him and we would hold his hand and take care of him.

Rees came to depend on this ... each surgery, each procedure, each uncomfortable moment, ... prior to and during ... he would reach for us and say,  "mama, baba, hold Rees-y hand."

Jonah is feeling much better now but your prayers for his anxiousness and fear are greatly appreciated.  His surgery is scheduled for Wednesday and he will be hospitalized for a couple days at least.  As always, we will update as we can and we look forward to sharing the next phase of Jonah's transformation with you.  

A Little Outside Fun ...

We took advantage of the sunshine this afternoon and took a walk/run around our neighborhood and then the kids spent some time playing out back.  

I decided I better take advantage of the photo opportunity as well!

Rees, though still taking his time in healing his wound, he is in great spirits and feels pretty good.

On days like today when he gets in a good amount of play, he tires very early and will sleep long and hard.

This little guy really enjoys swinging!! 

Just a few more days and he'll be underway with his jaw distraction and about three weeks after that, his lower jaw should be right where it should be.  I can't wait to see the transformation in this sweet, beautiful boy.

Molly took a turn, well ... a few turns ... along with some flips and twirls too ... on the trampoline.