In all things give thanks!

Today unofficially started our Thanksgiving break! Tomorrow we have a 
few odds and ends to finish for school and we are picking up Rachel & Cody from Eastern... Yay!

It will be so nice to have everybody together under one roof for a couple 
days at least. 

Thankfulness is defined as being aware and appreciative of a benefit,
being grateful or expressing gratitude. It is easy for me in the day
to day struggle of life to forget my blessings... or to focus on the struggles instead of what we have.  

 It has never been easy to juggle doctor visits, fill prescriptions, 
make sure blood work gets done, etc. it is even harder while working... 
It is also hard to schedule around college breaks.

Yet we have come so far and I am truly thankful. It seems like yesterday
but 10 years ago Cody spent 10 days in the hospital the week of 
Thanksgiving. (We actually met the doctor who would become Rachel's
rheumatologist) And although some days now are extremely rough...
I am aware things could be so much worse.

I am thankful for Mike's cancer being in remission. For phlebotomists who
can soothe a nervous 11 year old and make an unpleasant item not as bad as it could be. I am thankful for heating blankets to take the chill of of stiff
joints in the morning. For doctors that call late at night after their own 
long days to put a worried Mama's fears at rest. For medicine that takes the edge off of pain and allows boys to play soccer and girls to dance.

I am thankful for the Lord's provision in a 1000 different ways. Mostly
I am thankful for a God who has proved Himself faithful time and time 
again even when I have been faithless.

November ....

"The wild gander leads his flock through the cool night,
Ya-honk!  he says, and sounds it down to me like an invitation:
The pert may suppose it meaningless, but I listen closer,
I find its purpose and place up there toward the November sky."~Walt Whitman

Early in the morning when I take Flip outside we can hear the geese making their

way south... and it makes me long for the Eastern Shore. It makes the days

of my youth seem not so distant in the past.

The funny thing about advancing in age, is that even though your body ages

your mind feels like it was just yesterday. The one plus that with age comes

wisdom (hopefully).

Now I see my oldest two children at the age I feel was not so long ago... and hope

that my husband and I have as parents instilled some of that wisdom so that they will not make some of the same mistakes we made growing into adults. Throw in a chronic illness and the vulnerability I feel at times is overwhelming ~ and it keeps

me on my knees. 

My own journey with STILL's has been arduous of late. The methotrexate does not 

seem to be very helpful except with a few nasty chemotherapy side effects. So it

looks like a trip to the rhuematologist is in order. The weather has changed and so 

has my schedule. I have a new client who's school is only 20 minutes away which is wonderful. Plus it's only 2 hours a day everyday. Which has allowed us to fall into a 

nice school pattern at home. 

Although school is going well a schedule change is difficult for my youngest so

we are in the adjustment phase right now~ add preteen angst to the mix and that the holidays are fast approaching. Some days are a boatload of fun {voice dripping with sarcasm}. 

I am hopeful and pray that Ephesians 1:6  which says I'm convinced that God, who began this good work in you,will carry it through to completion on the day of Christ Jesus will be manifest in each of there lives. I will have been there through it all to give Him the glory.

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Another leg in the journey...

'The days are long but the years are short.' 

This quote has never seemed more true than now. The past month has been a blur.  The last time I wrote Cody and I were sitting in the hospital waiting for his chest tube to be removed.

He had his chest tube removed Monday and we headed back to the Children's Inn and the NIH for some more tests and full nights sleep before heading home. We came home Tuesday and then had a barrage of things to do in the three days left before dropping him off at college, including another chest x-ray and blood work.

I'm not going to lie after we dropped him off I sat in the parking lot 
and cried. I couldn't believe 4 days after having his chest tube removed 
we were leaving him at college.

Then three days later we made the trip to drop Rachel off for her third year....    

                                                              

Plus the new school year for Hannah and Lucas started in between  

those two drop offs. 

 It is harder to manage medical issues from a far. Cody has been having

an issue with hematuria which we are keeping an eye on. It's a new 

         leg of the journey we're on and we are all learning as we go.                                                        

Last Thursday started as a good day. The end of the day... not so much.  Cody and I arrived at the Children's Inn on Wednesday evening. Thursday was to be his check in appointment with his clinical team at the NIH before he headed off to college the next weekend.

Everything seemed to go well Thursday. They were pleased with how well
he was feeling but, they wanted him to do a trial run of daily Kineret injections for a week. They just wanted to see if they could get a slightly better handle on the arthritis pain. And they wanted a few labs redone because his C3 and C4 complements had been low last time.

Instead of leaving to go home Thursday we opted to stay and do his first 
shot there in case he had any reaction. He took his shot at about 4:30 and although it stung like crazy he seemed to be fine.

I went to bed about 10 feeling exhausted and totally dreading the drive home the next day. At 10:30 I was awakened by Cody. He was complaining of severe head, jaw, chest and arm pain... all on the right side. After no slight bit of panic and consulting the paper with Kineret side effects we headed down to the front desk at the Inn. The Inn called the clinical center who then sent Cody and I by ambulance to the local community hospital Emergency department to be evaluated.

It turns out it was not from the Kineret. He just had had a spontaneous pneunothorax. His right lung had collapsed 25 %. They
weren't sure what caused it in fact they said with 50% of cases it was 
never discovered as to why it happened.

Meanwhile back at the Inn they were trying to get a hold of Cody's clinical
team to let them know he was in the hospital.  The hospital admitted Cody
, first time we have not been on the pediatric floor. He was seen by a cardio- thorasic surgeon who decided after speaking with Dr. Barron (who happened to call while he was sitting there~ because she was concerned about some lab results and then had received a cryptic message that he had been admitted to the local hospital) to take a wait and see approach for a day. Apparently sometimes these things recover on there own and because Cody's clotting factor was low they thought it would be prudent to wait especially since his first repeat chest x-ray showed some slight improvement.

Later on Friday Dr.'s Barron and Stone drove to the hospital to visit Cody and see for themselves how he was doing and touch base. They wanted to redo some labs and because Cody had had significant blood in his urine see a Kidney specialist. More clues to a possible diagnosis. So the plan at that point was to hope that his repeat x-ray on Sat would be even better a trend would be established. He could then be discharged and we could come back to the Inn and be seen on Monday again before heading home.

However Saturday Morning's x-ray did not bring us good news. His lung had actually collapsed more almost to 50% and he needed the chest tube as soon as possible. The surgeon was however mindful that Cody wants to be able to head to school on his scheduled date of Sat.the 23rd so he used a smaller tube that would be less invasive and require a shorter recovery time.

So now we wait. Our prayer is that his x-ray this Sunday will show that the lung has re-inflated and he can have the tube removed at the 24 hour 
point. And that he can discharged Monday on time to go to his appointments that they scheduled at the NIH. Then we can be home Tuesday in time for lunch.

We totally appreciate all your prayers. This is turning out to be quite the roller coaster ride for me emotionally.  After Cody's successful trip to the Dominican Republic in July... I was feeling pretty confident about him heading off to collage a couple hours from home. Now not only am I being plagued with doubts.... by the time we get home there will be ever so much to do still to get him and Rachel ready to head out in a much shorter amount of time.

Blessings!
Peyton 

Life is lived in the seemingly mundane moments.

"August rushes by like desert rainfall,
A flood of frenzied upheaval,
Expected,
But still catching me unprepared.
Like a matchflame
Bursting on the scene,
Heat and haze of crimson sunsets.
Like a dream
Of moon and dark barely recalled,
A moment,
Shadows caught in a blink.
Like a quick kiss;
One wishes for more
But it suddenly turns to leave,
Dragging summer away."
-  Elizabeth Maua Taylor 

I am not ready for it to be August! I am well aware that the next few weeks will fly by way too quickly. We tend to mark time by big events and celebrations... birthdays, weddings, and such. But real life is in the mundane moments and what we miss the most when change occurs.

My oldest doesn't like change... she comes by it honestly. It's not my favorite thing either. But the only thing constant in life is change. 

It used to be when the younger two were little and the older two would head off to camp, we would have tears and wails of " I miss so and so". All to often I would think "what is it exactly do you miss... the fighting etc??" Tonight I realized yes I just might miss that in a couple of weeks.

I will miss the drives to get milk and stops for coffee. I will miss reminding Cody of a chore he said he would do. And yes I will even miss Rachel and Cody parenting their siblings even though I'm standing right there.   

My encouragement to you would be this... make the most of the seemingly mundane moments. Life is so much more than the big events. It's family dinners, devotions, and game night. It's cooking dinner together and talking on the way to ballet or soccer. 

Life really is what you make of it~ so make the most of it!

Summer is flying by...

Summer seems to be just flying by us way too fast.  Only five weeks left 

till school starts.

This has been a summer of growing for me. Cody left last Monday with his high school youth group to minister in the Dominican Republic.  It was a

big leap of faith to send our chronically ill child on a trip of this magnitude.

I'm not going to lie the lack of communication has been brutal for this

Mama. {honestly I don't think I've ever gone 5 days without talking to Cody~ even with camp I had to come give him his shot by midweek} God

has shown his hand and provision in this trip since day one so I

will continue to trust and can't wait to hear all of the stories Cody will come home with.

The reality is though that everything my son will attempt in life will carry

risk. He has had up close and personal experience from an early age that life is not fair. It is truly a blessing that he was able to go on this trip. And 

he is learning to navigate this life of chronic pain and autoinflammatory disease with a strength and grace I find amazing. In five weeks he starts a new chapter of this by heading off to college.

Flip (our Seeing Eye pup who didn't make the cut), Cody's constant companion for the past 3 years has not quite know what do with himself 

this week. So he has been hanging out with me and Rachel a lot this 

since Monday. He and I are practicing for the fall.

You would think this is old hat for me. Rachel is entering her junior year...

but, I am finding it just doesn't any easier. It's not that it's a bad thing

to watch them grow up... it's actually wonderful to see them grow and blossom into adults and head off into the world... it's just change and

it takes some getting used to.

Watching the harvest grow....

This month Mikee has been officially cancer free for one year! Yay! We are now down to visits every 4 months.  It's has not been an easy year we 
are still climbing our way out of medical debt, we still have fears of 
re occurrence, but we have survived.  

Family devotions take on a whole new perspective. As I watch him open the word and read to the kids sometimes my eyes well up with tears... I am so blessed to have him still here. We have grown as a family. We are 
learning to apply our faith in tough circumstances... we are learning
to wait and accept tough answers and be grateful when mercy is given.

This month also marked Cody's High School Graduation. We started with 
PA Virtual when he was in first grade on the 11th he graduated. Two 
down and two to go. So this August both Rachel and Cody will head off to Eastern University. Rachel will start nursing clinicals and Cody will start his first year of premedical studies. And I will be down to teaching two kids at home like I started 12 years ago. It's an odd feeling watching your children
venture out of the safe haven you have created for them. It is scary and wonderful all at the same time. Scary because we don't control the 
variables (not that we ever really did). Wonderful because we get

to see the harvest we so diligently planted come to fruition.

Future and the past....

    Our whirlwind visit to the National Institutes of Health was almost an overload of information and ideas. However I feel good about it. They did
quite a few tests and started genome sequencing.  He may eventually be enrolled in another study in conjunction with the fever syndrome study as well as the other children. 

    I feel as if we are at least on the road to a more definitive answer. With not just Cody but the rest of the kiddos too. It also makes me feel more confident as to sending him away to school. So the plan is for him to
return before he leaves for school in the August and he has started the 
SubQ Actemra injections.

    School is gearing down we should be finished by the end of May. And I
have some decisions to make about next year for the younger ones and myself. We had another OT evaluation for Lucas which basically confirmed
his previous evaluation but brought up more questions then answers. I 
can not help but wonder how much of it is neurological inflammation? Not
sure what direction to go from here quite honestly.

   Today was one of those I just want to cry days. Some of them were
good tears and some tears of frustration.  Cody got the go ahead from
his doctors to participate in a summer missions trip.  Any time he gets to
participate in a normal activity... you know an activity that someone else
wouldn't think twice about doing it's a reason to rejoice.

    The frustration comes because now there is a whole new level possibly
to Luke's issues which is another battle to fight.  And financially we 
are already pushed beyond our limits.  Vehicle, house, and medical issues
are making it hard to keep my head above the water. And yet I am well
aware that I am blessed beyond measure.

    I still have my beautiful children with me. I am able to see their faces and hear their glorious laughter. And although they test my limits daily, I 
am truly blessed.  

    While away at the NIH Mike and I celebrated 22 years of marriage. This year it passed quietly without much fanfare. However our lives together is a testament to God's grace and provision.  At times I have lately I 
have cried out to God asking how much we are supposed to bear... but we are not alone. Last year on the 2nd of May I sat alone in a waiting room while Mike had his cancer surgery.  This year has truly been a faith building, learning to trust year.

Forging ahead

 

  I have thought more than once this past week~ I am not good at this motherhood job.  It was just a normal week not anymore crazy or hectic than any other.

   Of course it was an infusion week and truthfully infusions weeks (or shot
days for that matter) always give me pause. For many years now I made
doctor appointments, picked medications up, fought insurance companies for treatments, prepared and given shots, communicated with doctors, stood by while tests are performed and infusions administered. That part of my job has shifted for at least two of the four kiddos ~ now we have entered into teaching how to be a self advocate. Honestly that is exhausting... 

    However, it is where we are at and like it or not I am in the process of
teaching two young adults to self advocate. Rachel has been doing fairly
well although after being with a pediatric specialist we are finding the adult
specialists are not nearly as helpful. So with Cody's more complex issues
it is a bit unnerving to all of a sudden give him the wheel. 

    It is also highly unnerving that he is beginning his foray into college. Yet this fall the plan is for him to move into a college two hours from home. He
is even pursuing an oversees mission trip this summer. So my job of late
is to be the mean mom. You know, hard-nosed and hard lined, pushing
him to do the outside of his comfort zone things. The accusation, "Are you using applied behavior analysis on me?" has been uttered more than once. :)

    This coming week we head to the National Institutes of Health. This time he signed all the scary consent forms....here we are forging ahead to a new chapter in life.



  

   

   

Opportunities for excellence

    After talking about it for 9 years with the doctors, I decided to go ahead on my own last February and submit Cody's medical records to the NIH. Since he's had some genetic testing which has come back with no

known mutation, the general consensus was because funding is scare he wouldn't be accepted into a study. I really felt though we should try before

he left pediatric rheumatology and entered college. 

    Thirteen months later we got the call! He and I will travel to the NIH on May 7th! I am fully aware that we still may get no answer per-see to what

he has however I believe it is a step in the right direction. 

     For now there are many details to work out. The week we go, Rachel 

is coming home from school... so we need to arrange a way to get her and her things home for the summer when the person who usually does that and has the van (me) will not be around to do it. Also since the winter has been so bad and Mike has already used most of his vacation days he can not come with us.... so we also need to find someone to be with

the younger two till he gets home from work Wednesday, Thursday and possibly Friday.  

    I have to admit I feel so unprepared. For years we kept charts of symptoms, fevers, and such. When it became clear that no diagnosis was 

on the horizon... we just started soldiering through it.  Also as each of

the other kids started showing symptoms it began to be just a chore to

keep my head above water some days.

  

    It's now almost 6 am and I've been awake since about 4:30 ugh! In a 

little while I have to get up and go grocery shopping... the cupboards are

a bit sparse.  Lucas has an OT evaluation this morning so I want to go before then.

     I am praying for guidance about school next year and work. I have an opportunity to work more hours but I'm concerned about school with

Lucas.  He's made great strides this year and jumped 4 grade levels in 

reading. I don't want him going backwards because I'm not there as much.

Praying for and about a solution.

     This week did not start out the best. On Sunday as we got ready for 

church, Hannah noticed the downstairs ceiling was dripping. The ice maker

hose had a leak in it. So the floor boards in the kitchen upstairs and the 

ceiling directly under the fridge downstairs were water logged. Mike and

Cody spent the morning then fixing the hose and taking down the ceiling 

downstairs. When Mike and Cody went to the hardware store for a new 

hose the spring on his passenger side door came off.  :) Mama said there be days like this.

     

    In a bible study I've been studying about Ruth. Ruth was called a

women of excellence not because her life was perfect... her husband 

died, she moved o a foreign land with her mother in law etc.  But she 

trusted God and he provided for her. I want to be a women of excellence 

too. 

       

Just keep going...

  The past two months have been atrocious! We've had more snow than I 
have cared to see, in fact we are just actually starting to see grass 
again! 

   I feel like a first year teacher all over again this year. I have gotten 
every little bug that has come along this winter. This may be part due to the medicine I have been put on for the Still's Disease. I truly feel as if I've been in some stage of a cold since Thanksgiving.

   We are entering that phase of school where there is no break till Easter
which can be a bit tedious. All these snowy days do not help... the good thing about cyber/homeschooling no snow days... the bad thing about cyber/homeschooling no snow days. 

   I read this today and it bears sharing~ to remember then things are tedious and hard... on particularly rough days when I am sure I can't
possibly endure, I remind myself that my track record for getting through bad days so far is 100%. And that's pretty good.

   The truth about life is it does go on even when we don't feel like it
should. The past two months I have been fighting off the enemy and it's wearisome. I waffle between feeling as if I am not doing anything well to feeling un- and under appreciated. Many days I have wanted to stay in bed with the covers over my head. But I remember that I am not alone in this journey and I cling to 2 Cor 4:8&9 We are hard pressed on every side, but not crushed; perplexed, but not in despair;persecuted, but not abandoned; struck down, but not destroyed.

   


  

You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now

So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
[x6]

I will call upon Your Name
Keep my eyes above the waves
My soul will rest in Your embrace
I am Yours and You are mine

A grandfather's legacy.

We are all leaving a legacy. Is it a good or bad one? My grandfather passed into eternity this morning. He was turning 90 in a month. He was a preacher and he preached with his life not just his words.

When I was probably 13, I went to spend a week with he and grandma.
His sermon is one that to this day I remember.  It was about rose colored glasses. How that God sees his children through rose colored glasses.

He spoke about how when we came to Christ, and were washed in the 
blood that the Father did not see our old sins. Because he saw us through the blood of Christ. I'm not sure why this particular sermon sticks in my
memory. I do know that when the accuser comes to remind me of how often I fail... this is what I fall back on~ that I'm forgiven and my heavenly father looks at me through rose colored glasses.

Thank-you Grandpa. Thank-you for showing us a life well lived in Jesus.