Jaw Distraction - Take Two: Commence

 Hello!

On Wednesday this week, Jonah had his bi-lateral mandibular distraction surgery. The surgery wasn't scheduled until later into the day ... something we have not been used to.  Although, it did give us all a chance to get some things done before we were off to the hospital.

We hadn't been to CHW since just about exactly four years ago. Some things are the same but a lot has changed, especially due to the pandemic.

Jonah was acting so brave and stoic.

He changed into his stylin' hospital gown and just sat quietly.  He didn't even want to turn the TV on ... definitely odd, since that's the highlight of visiting the hospital.  

Several doctors and nurses came and went, asking questions and giving instructions or explaining some things.  They decided, due to the type of surgery, that instead of incubating him orally, they would do it nasally.  So, .... a woman came in to have Jonah use some special nasal drops.  The intent was to get his nasal passages prepped for intubation.  Jonah didn't care much for this but cooperated like a champ.  Afterwards, that's when there was the hint of fear or discomfort as a few tears escaped from his eyes.

The goofy juice did not make him goofy but may have helped him to stay calm.  He went off to the OR rather peacefully. 

Baba and I then proceeded to the waiting room ... where we were virtually alone the entire time.  CHW ... we love what you've done with the place (earlier this year, the surgical floor was completely remodeled) bit darn you, COVID-19, what a waste of space!   The staggering of surgeries and keeping true day surgery patients separate from those overnight-ing drastically reduces the amount of people in the area.  The seats are already strategically placed but we could have sat in ALL of them ... it wouldn't have mattered.

We waited ... and waited ... and waited ... I forgot how long these things can really take.  Even the waiting room attendant had left after her very long day ... and we were still waiting. Finally, the surgeon emerged and said they were finished and that he thought it went well. He did, however, injure one of Jonah's teeth and it could not be salvaged.  It will be a bit before we know if the repeated warnings of nerve-damage-risk will become a reality or not but we're hoping the loss of a tooth is the worst of the damage.

Jonah was pretty groggy and boy, oh boy, this boy can snore ... when coming out of a surgical procedure and literally expelling anesthesia with every exhale.  It wasn't too long, though, before the nurse came and raised him awake so she could start him on pain medication.  One syringe of Tylenol and three syringes of water were enough to stir Jonah's stomach and that set off the vomiting.  

The thing about facial surgeries is that it is nearly impossible for blood not to end up in the stomach.  However, the stomach is always displeased with this and it will inevitably post an eviction notice.  After experiencing this a time or two already with previous children and their surgeries, I know to expect it but it is usually a bit startling.  Unfortunately,  it took three times during the night to achieve a full eviction.  

The sky had a beautiful glow as it bid farewell to the day.   And we looked forward to going home in the morning. 

We did finally get home in the early afternoon.  Jonah was very happy to leave the hospital and be at home.  His baba got him a new lego set to assemble and he mustered all the strength he could to get started on it ... for about ten minutes ... and then he went to bed.

He has slept a lot since being home and he has gotten much more swollen in the last day, which is normal, yet difficult for him.  He's a trooper and we're so proud of him.  We start turning tomorrow ... turning the rods to begin the distraction of his lower jaw.

Thanks for you prayers and for all the good thoughts for Jonah.  Keep 'em coming ...

A surgery is up and coming ... jaw distraction - take two

 Hello friends, family, and any readers we may have out there ....

.... again, it's been a while and it takes more effort than ever to make an update but it is about time.  I dropped off this thing for quite a while but we're still here,  doing pretty well, learning to live like we've always been in pandemic, and preparing for a surgery.

That's right ... the fun has arrived!  Just kidding ... about the "fun" part, that is.  There's a certain pre-teenage boy who does not think he's about to have fun.

So, our last update happened HERE and to add on to that post, which was done in December 2020, we are now officially moving forward with the next jaw distraction surgery for Jonah.  He will be having surgery on June 2nd to place the distractors.  

On the one hand, we feel like we know what to expect as we've been through numerous surgeries with our kids but on the other hand, this will be a bit different because a) a different type of distraction device will be used this time (it does sound similar to the devices used when Rees' forehead was distracted) and b) its been a while ... several years ... and we might be a bit rusty (and tired).

Once the orthodontist committed to moving forward after we finally agreed to have the surgery done locally,  we requested to have it done during the summer. Jonah will be going to middle school in the fall, which can be brutal enough of its own accord.  We feel it best not to have three months of distraction DURING the school year to possibly add to the already awkwardness of a new school, new kids, new teachers ...

                                     

... the goal is to bring Jonah's jaw forward 20mm.  That's quite a distance but, if I remember correctly, it was about the same distance the first time as well, so it can surely be done.  And for anyone who might question -- yes, his jaw was moved about 20mm the first time but as he has grown (and he has sure grown A LOT!), his lower jaw essentially stayed where it was originally moved to.  His lower jaw distraction does not automatically grow with the rest of him, if that makes sense. 

Rees currently has an upper palate expander in place as well as a lower expansion device that is removable.  There is the likelihood that he will need a bone graft to his mid-line sometime later this year.  Where his mid-line cleft is, albeit small, there is concern about the front teeth not being supported in bone so the intent of the graft is to correct this and allow for further manipulation through orthodontics.  Any other structural or reconstructive measures (not guided by the orthodontist), we still intend to have done by the surgeon in Oklahoma City. 

In the meantime, we've been hanging out, looking forward to the end of this unprecedented school year at home, and doing some cool-weather camping.  

Your prayers are appreciated as we prepare for Jonah's surgery.  Once done, it will require A LOT of follow-up from both surgeon and orthodontist, several times a week for three months (Eek!  I didn't miss THAT!)  and Jonah will not be able to go swimming ALL SUMMER.  

Thanks so much for your love and support!  

A Long Time Since ... and News on the Horizon

 

Tap, tap ... testing: "is this thing on?"

Is there even anybody still here in this space?  If so: here goes. 

 I know it's been a while since this space has been occupied but, well, you know ... life happens and it can be enough just to live it without documenting all the things.  

 There's been a lull in the medical procedures that our dumpling boys had since being adopted in late 2015.  Some of you may recall the numerous surgeries that were endured in 2016 and 2017.  Of course, they are doing great, even in this 2020 pandemic.  At this time, I will refrain from discussing anything about this monumental year except this task at hand: Jonah and Rees.

So ... where to begin ... 

... both boys have grown so much!  They really have. 

Both boys last had surgery in 2018 when we travelled to Oklahoma to have surgery done by a new surgeon.  If you need a refresher, you can click HERE.  We had a great experience in Oklahoma and felt really confident that this surgeon would be the one for all of our future medical/surgical needs for Jonah and Rees.

Since then, we've just been living life and taking a break from all things medical.  The boys have continued to be followed orthodontically as this is what would drive next steps.  The time has arrived for those next steps.  

Rees was born with a midline cleft, among other things, and he has upper and lower jaw concerns.  He has an open bite tendency and his lower jaw is too far forward.  He also has some issues with a few teeth that are currently and will continue to be monitored.  They are recommending that he have an upper jaw expansion and a lower arch development appliance. The expansion will widen his jaws, which will help with the overcrowding and overlapping of teeth he has as well as pave the way for a needed bone graft at the site of his cleft.

Jonah, unfortunately, will need to undergo lower jaw distraction again (and likely a time or two more after) due to the fact that his lower jaw does not keep up with his growth.  He has grown amazingly well but the growth has left his lower jaw "behind" and it is now greatly affecting his speech and his eating.  Additionally, he may require some surgery to affect his bilateral cleft and the mountain of teeth that he has developed behind it.  

Long story short, we have decisions to make and items to consider because the surgeon we transitioned to is located in Oklahoma and the needs are currently being directed by the Orthodontist who is *here* ... where we live ... and it is being recommended by said Orthodontist to have the medical/surgical aspect of the orthodontic care be handled by a surgeon who is *here* ... where we live.

It stresses me.  We are waiting to hear from the office at the hospital as we have agreed to have a consultation with the surgeon and also have a CT ordered for Jonah to help determine what should/needs to be done.

Prayers would be greatly appreciated.  I'm struggling with this a bit and the feeling that I don't really have a choice.  

We sat there and listened to the various next steps being recommended for our sons.

Why can't God just tell us what is the best thing? I asked myself ...

And in my head I heard the voice... the one that I always wonder if its me talking to myself or if it is actually God speaking to me... and it said, "What makes you think He isn't already telling you?"

And then at dinner later that evening, as we prepared to eat but began the usual prayer reading, my daughter unwittingly read the verse Proverbs 3:5-6 ... "Trust in the LORD with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will make your paths straight."
...and then the accompanying prayer "Father God, it is impossible for us to have all the answers; we are incapable of knowing everything. All we need, though, is to trust in You... for everything ... and we will be at peace, even with our unknowing. You are in control, LORD, and Your are our Guide. Help us to stay focused on You. In Jesus' Name, Amen."

It's been hard for me to let go of the very full confidence I held for the surgeon we had for ten years, the one who performed amazing, transforming procedures on all four of our adopted children. It's been hard for me to change gears or reroute my expectations ...
...but aren't I then behaving as if I don't trust God with my children?
I do want to trust.
I do want to believe that God has a plan.
I do want to act as though I am surrendered to the will of God.

So, please , LORD, please let us know ... help us to respond in favor of Your leading. Allow us to hear Your voice in the small things as well as the big things. Amen.

Four Years ...

Hello from the Prendergast Family!  Here I am again writing this letter … our boys have been a part of our family for FOUR years now and we’ve just celebrated Jonah and Rees’ Adoptiversary again; we sure can’t imagine our family without them! 

Jonah - Jonah continues to make great progress.  He continues to have an IEP in school for his speech deficiency.  He gets speech therapy during the school week and assistance where needed that is provided by the school therapist.  During the summer, he receives speech therapy near Children’s Hospital in Milwaukee.  He works really hard, one-on-one with his therapy and the different exercises they do with him.  However, in “normal” situations, he struggles to slow down and make the concerted effort to speak slowly and clearly.  It’s just not natural to him to “force” his mouth to move in such a way as to make his words sound “normal”.  Since being in our family, Jonah has grown A LOT!  At his very first medical check-up when we brought him home four years ago, he was 3 feet 9 inches tall and 44 pounds (at the age of six years old).  Now he is 4 feet 8 inches tall and double the weight.  He sure is thin but he has grown so much in height!  Jonah really enjoys the electronics of all sorts.  He loves when we allow him time to play on the Wii game console and he also enjoys utilizing his school-issued chrome book to play math games and complete reading lessons, one of the pros of the chrome book, I guess.  He really enjoys our Friday movie night, something we typically have each week.  We don’t really watch anything on the TV during the week (who has time for that?) so Friday night is a bit of an “event” in our house and Jonah seems to “Live For It”!  

Rees - Rees continues to be our biggest helper and seems to thrive in his assistance of things needing to be done and tackling tasks as a family.  He is really doing pretty well in school and strives to do a good job.  He now has an IEP in school for reading as this continues to be a struggle for him to grasp quickly.  He is progressing and does put forth a good effort … it just, as is the course for Rees, is taking a bit longer for him to get to where he ultimately needs to be.  I would say that his favorite thing to do is helping his baba with whatever Baba is doing but next to that, he enjoys watching movies probably just as much as Jonah.  He continues to be our little worker bee and I really see him as growing into a role with great responsibility.  He is currently about 67 pounds and 4 feet 6 inches tall compared to 45 pounds and 3 feet 7 inches four years ago.  These boys sure are sprouting!  We get so many compliments on Rees’ go-getter attitude, his kindness and compassion for others, and his cheerful disposition.  It’s truly amazing how resilient these boys are.  They love Asian food and movies and would probably be happy if those two things were all their little lives included … just kidding, but maybe not kidding.  :-)

  

Medically speaking, not a whole lot has happened this year.  We have been attending regular appointments and making several considerations but for the most part we are on a medical lull.  Jonah has a lot of different things going on with respect to his jaws, his teeth, his abilities with speech (and how much of his speech is affected by his current physiology).  He has had several follow-up xrays to evaluate progress with his growth and teeth movement and, for now, “they” are just continuing to monitor as the things they are watching play a part in determining the next steps and which surgery is necessary.  One thing is certain … Jonah has grown so much that it is likely that he will require jaw distraction again in the future.  All of his growth has affected the previous distraction which, logically, seems to make sense.  We requested a 3D CT for Rees during the summer and it revealed what we suspected might happen.  His tumor, that our previous surgeon worked so hard to eradicate, is still growing, although, it’s being said that it is growing slower than he is.  That is a good thing and means that it does not have to be addressed right away.  Rees continues to be in a holding pattern while he grows.  As long as he okay with waiting, the best thing for the moment is to continue to wait before diving into the big surgeries that he has in his future. 

Last night we took them out to dinner for their “adoptiversary”.  They actually LOVE this … that we take just the two of them and celebrate the day they joined our family … and so far, they still LOVE to get to do it together.  We took them out for Asian food, of course!  It was a great time and they enjoyed every bite immensely.  At the end of our meal, instead of the server coming to our table with the check, the owner brought it and she told us our meal had been paid for.  We were stunned and asked by whom.  She pointed to the booth behind us and we looked but there was no one there.  She asked, “you don’t know who they were?”  And we told her that we did not … (I had not even seen who had been sitting there).  I was speechless and wondered what it was that caused them to be so generous … to people they didn’t even know!  But that is how it has been ever since we answered the call to bring these two boys from the other side of the world into our home, our family, and our hearts.  You are receiving this letter, year after year, because YOU … many of YOU whom we’ve never even met … saw us and were moved to do something, something so kind and so generous … something we really could not do alone … something that has made a lasting difference, a lifelong impact on two special boys (and their family too!).  This time of year is the perfect time for their adoptiversary as it is just an extra reminder of all that we are SO THANKFUL for … and surely this includes YOU!

With love and blessings for Thanksgiving and all the year through, from the Prendergast Family.

Summer is here and, for us, that means camping!!

We love camping!  

All of us love camping! 

And hiking ...  

... this particular weekend that we went camping, the mosquitos were abundantly harsh!! 

For real, we sprayed mosquito and tick repellant all over ourselves, practically bathed in it, and it just wasn't enough to deter the battalion of mosquitos!

So, the hiking was kept to a minimum.  

Like ... 15 minutes max ... literally!! 

This type of beauty to be discovered and uncovered ...  

... well, it would just have to wait.  Like until the first frost!!! 

The overlook was pretty!!

That's Horicon Marsh in the distance ... 

... we "MAY" venture out that way, depending on the extreme heat index we're supposed to be experiencing on this particular weekend ... oh, and the mosquitos. 

We did venture out to the marsh.  We went earlier in the morning and anticipated only staying for a short bit ... just to say we saw it.   

This mammoth is constructed completely from pieces of hribar ... amazing!! 

The marsh area is actually quite nice.  It's pretty.   

The heat was not yet too unbearable and the mosquitos were not much of an issue at that time. 

We enjoyed exploring and walking around ... even being a bit daring ... 

We saw lots of different wildlife ... 

It was pretty cool to watch this bird convention ... geese, pelicans, herons... all hanging out together. 

Lots 'o Lilypads! 

A Leopard Frog ...he blends in really well --- we saw about a dozen of these guys throughout our walk.

Guess what??  We made it through the whole marsh area ... well, at least we walked around the WHOLE thing.  One giant loop ... came out to about 3.25 miles.  In the heat.  And humidity. 

So, then we went to a splash pad to cool off!! 

It was so cold ... but so perfect!! 

It was just what we needed on a very hot day ... and it was FREE due to the heat advisory!!  YAY! 

Jonah and Rees even took it upon themselves to wade through a nearby stream.  No shame! 

Then we took a walk through the West Bend Labyrinth Garden that was nearby. 

It was so pretty, full or gorgeous flowers and stone paths in a winding labyrinth. 

It was a nice weekend spending time with most of our kiddos.  We saw some great sites and enjoyed the sights as well.  :-)