Thursday, May 28, 2020

Look Who's Recovering

Well, 1 week and 1 day later and I don't think if you passed Nathan on the street you would have any idea what his little body had been through!  We are AMAZED at how well he is recovering physically and what a champ he has been through the entire process!

The first couple days were really rough as the anesthesia was leaving his system, regulating pain, never truly sleeping, etc. but all that is to be expected.  Even in all of that, we were so thankful that even at the peak of his swelling, everything moved out and down the back of his head so his eyes were never swollen shut this time around!  The first week has been a wide range of pain, energy, fatigue and emotion.  We've been back home for about 5 days and that's been a great thing for all of us! 

A couple of classic comments from the week:

"But Mom, my head hurts!  I didn't want to have surgery!"

"My head feel squishy."

"I want to put my head down but the bumps hurt!"

"What's on my head?  Can you take it off?"

I think the last 24 hours he has rounded a strong corner in terms of less pain and more energy!  We were also thankful to learn that even though most outdoor and physical activity needs to be limited for 6 six weeks, he is cleared to swim as long as he feels up to it!  That at least brings a little normalcy to his day.  He definitely has his 6 year old boy moments of being mad about what he's not allowed to do but ultimately, he somehow gets that protecting his brain while his head heals is really important.  And let's be honest, who wouldn't love to be pushed in a stroller while the others huff the hills on their bikes? :)

His siblings have been amazing.  Every day Bryce asks, "NayNay, can you wrestle yet?"  To which Nathan responds, "No Bryce.  Not for 6 weeks.  July 1st I can wrestle you, ok?"  Maddie (who turns 8 on Friday) has learned to share the attention of her birthday week, is the queen of coming up with creative games to play on the floor and remains his most dedicated therapist/cheerleader.

We've been exceedingly blessed by the outpouring of love and support - phone calls and texts, meals, scriptures and songs shared with us, people making videos, recordings and dropping off of toys and goodies to keep him occupied and entertained as life. slows. down., to even folks asking and wanting to help stand in the gap for potential insurance concerns (we're still in the process ;).)  We do serve a BIG and GOOD God who knows, attends to and ministers to our needs, hurts and fears.  He can and has used people who love Him and people who don't even know how much He loves them to care for us - we give Him ALL glory.  He IS good, regardless of outcome.  The answers to our prayers have not always been "yes."  We have wept bitter tears alongside many of you who are reading this for times in our lives or yours when He has not acted how we have begged.  Perhaps, it is through those tears we have learned and grown to be more keenly aware and so deeply thankful for an abundance of "yes's" in the last 8 days.
Thank you, as always, for standing with us in prayer and support.  Assuming all continues to go well, Nathan will not need another major surgery until he is 9. :) 


Wednesday, May 20, 2020

“There’s loads of space”

So many things to be thankful for today.  First and foremost, Nathan came out of surgery safely and it was very successful!  According to his team of doctors, “there’s loads of space around his brain now.”  

Another huge gift was that Jonny and I were able to find an atrium between the hospital and the medical towers where we were able to meet up and be together today.  Physical nearness can be such a relief...

At the end of the surgery, Jonny told me he was just going to walk with me as far as he could go.  We were outside the PICU when the doctors came out so we were both able to get the report from them together.  Then, because no one else is here (literally) they said he could come and just see him for a minute but would then need to leave.  Needless to say- Jonny was one happy dad.

Nathan is mostly sleeping and only waking to thrash around and tell us “it hurts” right now but that was to be expected.  Since they worked mostly on the top and back of his skull this time, the swelling isn’t as noticeable yet.  It usually gets worse but for now, we are glad it wasn’t as bad as last time.

Because if trying to comfort/distract/help him out hands will be full but we want to THANK YOU for your prayers for his surgery and thank you in advance/ask for continued prayers for recovery.

Here are two Pre- surgery pics From the morning and then the happy moment when we are with him again.  One of the great little things about this clinic is that they don’t shave his head- they twist his hair with rubber bands to make space to cut...  extra work in their part to help normalize his appearance post surgery.

I’m updating from my phone so this isn’t fancy or formatted- but honestly, we cannot thank you enough for your love, support and prayers in our behalf.  We have felt the arms of our Father holding us today through so many of you.

Saturday, May 16, 2020

Cranio Surgery during Covid-19

The time we knew would come has come and it has come at a very inconvenient time!

So, one of the deals with Apert Syndrome is that well, it's a syndrome, which is kind of like a gift that keeps on giving...  If you're newer to our family or have never really known what or how to ask about Nathan there's a quick synopsis on one of the other tabs of this super fancy blog;)  (BTW, any questions that asked respectfully are welcome and encouraged by our family at any time!)

Nathan's body is like a bone-making-factory, only it creates bones at speeds and shapes that effect him in pretty serious ways.  One area that's dramatically effected is his skull.  Essentially, the way the bones fuse in Nathan's skull make it impossible for his brain to grow in a safe and healthy way without major surgical intervention.  And because it's a syndrome, it's not one-and-done surgery.    Here are a few pics from the last time he had surgery on his skull when he was 15 months old.

We get sleep studies, MRI's, and other consults on the regular to monitor his needs and this past February when we met with his specialist the results of his MRI and over 100 measurements of his skull all indicated that now is the time for him to have this surgery again.  The MRI revealed that there is too much pressure around his brain and it needs to be alleviated.  Like I said, we knew that this day would come.  We knew it.  And yet, it's a pretty hard feeling to be sitting in an office and hearing that there's pressure around your son's brain and that a major surgery is needed.

Surgery will be this Wednesday, May 20th in Dallas.  As of now, it's scheduled for 1pm.

This is a hard one.  Although he's had over a dozen surgeries and tons more of procedures, studies, scopes, scans, etc. this is a hard one for many reasons.

  - The nature of the surgery.  Last time he had this surgery, it was explained to us in this way...  During this surgery, a cut will be made from ear to ear along Nathan's scalp.  The doctors will then separate (think peel) the skin off of the bone of his skull and fold it down.  From there, the bone of his skull will be removed in a large section and placed on a table where the plastic surgeon with "rebuild a bigger brain box" while the neurosurgeon protects Nathan's exposed brain.  Once the bone grafting has been done to re-shape the skull, they reattach all the parts, take out the ventilator and then we get to hold him again.  So yea, this feels like a big one.  

  -  Nathan's Age.  Currently, Nathan is living his best life!  He has had a fantastic year in Kindergarten, preceded by a great Pre-K experience at our favorite elementary school down the street where I teach 5th grade and Maddie also attends!  He's had fabulous teachers, assistants, speech and occupational therapists, classroom buddies and just a community of acceptance and support that we could never have dreamed for him!  He's made MAJOR strides physically in the last year and some of our beloved Ohioans would not believe that the baby they prayed for and provided for can swim, ride a bike without training wheels, read and tell you random NFL stats...  Last time he had this surgery he was blind for about 10 days due to swelling...  hard to imagine him slowing down that hard.  

- Covid Restrictions.  Obviously, we are thankful since there is pressure around his brain that this is deemed a "necessary surgery" and that he is able to get the medical attention he so desperately needs.  However, as it currently stands, only one parent is allowed to be with Nathan.  For the first time in 6.5 years of 7 children's hospitals, all the surgeries, NICU and ICU weeks/months, ER visits, etc. Jonny and are not allowed to be together as our son's body (and therefore our hearts) is in a vulnerable place.  We are still in discussions about who will be with him and finding out if we will at least being allowed to tag-team days so that our son knows that we are BOTH there for him.  I am SO thankful to be married to the man I am married to.  We are really in prayer and trying to defer to the other - I don't want to just play the "mom trump card" and he doesn't want to take that from me.  Neither of us can imagine not being there.  Jonny despises the culturally accepted mantra that Dad's are passive and wants his son to KNOW his presence in his neediest hour.  "I want those doctors to look me in the eye before they take him back.  I want him to feel my arms around him when he is scared and in pain and confused and to know that I am with him."  And yet, "I know you want and need to be there.  I don't want to take that from you.  Your ability to comfort him is so evident."  What a difficult and painful tension we are experiencing.  It's not a tug-of-war over right but it is a tension of realizing we both bring something and we both lack many somethings :)  As in many areas of life, there is not an actual right or wrong so our prayer is for unity that comes from love and humble deference to one another.  (Jonny did warn me that he might get arrested for breaking and entering a hospital so... ;) )

- Insurance.  As always, this is such a tricky piece.  It's been a push and a whirlwind and while all is not totally buttoned up and tidy YET, at the end of the day, this is the Dr. we feel is is best possible scenario for our son and his 1/160,000-200,000 syndrome.  Y'all, Jonny has an electrical engineering degree and a master's of Theology (meaning years of Greek and Hebrew) and we've had multiple types of private and government insurance in two states. Understanding the numbers or language or processes of insurance is not the problem - we just need the right people to sign the right papers.  Would you join with is in prayers for the financial provision through the insurance systems?

I won't lie to you.  There have been some BIG feelings these past few weeks as we've postponed and worked towards a surgery that we both wish didn't have to happen and wish we could have had yesterday.  I've been in a hard, raw place with the Lord.  This is the hard thing my family is walking through right now but there are SO MANY who I LOVE who are walking through dark, hard, places.  I'll end with a song I had on repeat yesterday and a text I sent trying to articulate how I'm reckoning my feelings about friends and church members I love and my own family and soul.  JESUS IS SUPREME.  May my heart rehearse and stand on this foundational truth in the very depths.  May His Spirit protect and direct our thoughts to dwell on ultimate truth. 

"I keep listening to this over and over- EVERY. SINGLE. WORD.  I have liked it a lot but it was in the forefront of my playlist and mind the last week or two...  even the bridge “ I can’t stop thinking about your goodness.”  These words are more prescriptive for my heart than descriptive.  It’s not like I’m deeply or even freely feeling His goodness.  BUT- I do know, that I know, that I know it is true.  He IS good.  God is not my enemy - My enemy is His Enemy.  Today, to ground my thoughts, I’ve been reading in Hebrews, remembering and reciting to myself all the ways I have experienced his faithfulness and training my mind to think on his goodness and truth.  In every possible worst-case-scenario, God is still HIMSELF.  That is my foundation and ultimate rest.  I am ANGRY.  I am angry at brokenness, I am angry that I have limits, I am angry that my son suffers.   But God's goodness and presence are limitless.  I am really asking his Spirit to tether my mind and eventually my heart to the truth and reality of who He is.  I know it can and will comfort me.  He may very well move insurance or he may not- either way the FINAL say and victory is HIS and I’m praying to experience his paid-for-on-the-cross victory in my own heart today- regardless of and before the circumstances are revealed!  May HE receive glory for a victory in my own, rebellious heart."

**I'll update my FB and the blog on Wed the 20th.  In the meantime, ALL the prayers, and scriptures and encouragement you can send our way our loved and appreciated deeply.**


Sunday, October 21, 2018

Five Years Old!

Hard to believe our Nathan is five years old!  We made a video tracking his journey.  Thanks to so many who have walked this road with us!  We are in a sweet and tender stage where Nathan is starting to learn and recognize his differences, but his competency and confidence continue to grow.  He got brand new ear tubes two days before his birthday, but that's been his only surgery since June 2017.  He, and we, wouldn't be who he is without the love, sacrifice, and care we've received by medical professionals, friends, family, and the body of Christ over the last five years.  Our family remains humbly grateful. Happy Birthday Nay Nay!

Thursday, April 20, 2017

80/20 = Winning

 Well folks, we're two days after surgery and I would have to say we are doing better than I would have expected.  Tuesday and Wednesday the whole family was riding the emotional wave of a three year old post major surgery.  Sounds fun, right? :)  As of today though I would say 80% of the time Nathan is doing exceptionally well.  The 20% of the time he's in pain or frustrated with the casts are really, really hard but like the title of this post says - 80/20 is definitely winning.  As always, coming out of anesthesia Tuesday was rough.  At one point Jonny, myself and three nurses were trying to control "Wild Man" (nurses nick-name) and he still managed to pull out his IV!  Strong willed, three year olds coming out of surgery are a force to be reckoned with for sure.

During surgery he ended up having his adenoids taken out as well.  Not an uncommon procedure at all (Apert or not) and especially with his mid-face fusions and fun airways this will hopefully just create a little more space for him.

His casts are much shorter than we expected, which is great!  As of this afternoon he's feeling much more adventurous about walking on them.  He's definitely using the "hold me" phrase a lot though and milking that for all it's worth...  Hard to be too mad about that ;)  Overall, I think we're staying on top of the pain pretty well.  Keeping him distracted from the frustrating casts has been tricky but the more he gets used to them, the better it is for all of us.

We're so thankful and touched by how well we're being cared for.  Meals, groceries, giving our other kids play-dates...  I'm pretty convinced that part of why Nay-Nay is recovering so well is because so many folks are sacrificing to meet our practical needs so that our attention can be really focused on him.  Thank you to so many of you for your prayers and encouragement to us on Tuesday as well - we didn't feel alone as we sat in the waiting room by ourselves.  Thank you.

I'm off to catch up on laundry but (especially for the O-H-I-Oians and our family out of state) I leave you with a pic of the other two kids and a video of Nathan riding his tricycle the day before surgery.  How far we've come...

Monday, April 17, 2017

Toes and Tubes on Tuesday

Tomorrow morning, Tuesday, April 18th Nathan will have his 10th surgery.

Considering where we have been and what lies ahead this surgery is neither major nor minor - just a good ole' fashioned Apert Syndrome Tune-Up.  He'll be having his 3rd (or 4th?!) round of tubes put in his hears to help address some hearing loss.  He is also having work done on his big toes.  They've been growing 90 degrees in the wrong direction - so tomorrow they will break them and put a pin in each of his big toes to help steer the direction of their growth.

Tomorrow's surgery is at Medical City, Dallas and it *should* be an outpatient procedure.  Nathan will be coming home with a short cast on each leg and hopefully lots of meds for pain and sleeeeeep!

He is on the up swing of a cold...  I wish surgery was two or three days from now from a respiratory perspective but since it's not my hope is that surgery will progress as scheduled and there won't be any unforeseen complications with his coming off the vent, etc.  It's been over two years now since he has had trouble coming off of the ventilator after surgery so while my mind can be tempted to remember and dwell on the worst moments, there's good reason to be hopeful.  Ultimately, the professionals make that decision so please pray with us for clarity and safety for our little guy tomorrow.

"How are you feeling about surgery?" has been a common refrain the past week or so from family and friends and the honest answer is I don't really know.  On one hand, like I said earlier, this isn't at all the scariest surgery he has had or will have.  We've handed him over for 9 surgeries and countless other scopes, tests, etc.  So in many ways this world that was so scary and unknown has become our M.O.  And the logistics take over - where to stay, what to do with the other kids, how to best care for him once we get home...  Once again, I am so thankful for amazing family friends and even a new church family to help with these types of details.

On the other hand, each time I hand my son over to surgeons I come crashing into the walls of my own finiteness all over again.  As fierce as my love is, it is limited.  My love can't make it all go away.  My love can't even protect him from pain.  Just as my love couldn't protect him at the park last week when a little girl pointed and said he was scary and screamed and tried to pull her brother away from Nathan yelling, "I'll save you."  My love can't fix or protect him from all the painful, frustrating and just hard ramifications of Apert Syndrome - physical, mental, emotional or otherwise.

My love does, however cause my heart to break for him and propels me to intervene on his behalf.  It is my love for him that drives me to the playground to help him attempt to make a new friend in the safety of my presence.  It is my love for him that has compelled me to weekly therapies for 3.5 years week after week though on any given day his progress can appear negligible to the naked eye.  It is even my love for him - love with a view to the end-  that allows pins to be pushed into his feet for his own sake.

Sound familiar?

Wasn't it just yesterday that calendars across the world had the word EASTER written across the tops of them?  Wasn't it just this weekend that we remembered the love of One who is Infinite, who is not limited in His love or Power?  Haven't I rehearsed to my own heart again how the love of God is what propelled Jesus to leave heaven to intervene on my behalf.  Is it not the love of Jesus that has compelled him week after week, decade after decade to engage in the process of transforming me even though I can often feel like I'm not making any progress?  Isn't it the love of God that compels him to gift us with his very own Spirit so that we are navigating the painful parts of our brokenness in the safety of His presence?   And was is not the purest, strongest, fiercest love imaginable that compelled Jesus to stay on a cross while nails were being pushed into HIS feet?  Wasn't it His love with a view to the end that lead him to the cross for my sake?

And then Easter.  What some dismiss, I cling to as my greatest hope.  The resurrected Jesus Christ.

My love for my son is not enough to save or protect him from the pain of brokenness.  Who am I kidding?  My love for myself isn't enough to save or protect myself from the pain of brokenness.    However, there is a love - the love of God, made tangible by Christ and felt by the ministry of the Holy Spirit that is more than enough.

Everything isn't going to be fixed tomorrow.  But...

Because He lives, I can face tomorrow.
Because He lives, all fear is gone.
Because I know He holds the future
And life is worth the living just because