new blog name and address!

We moved! Due to a Gmail issue this blog has moved to a new address with a new name!

We are now 'Redeemed Wandering' and you can find us at

https://redeemedwandering.blogspot.com/

Cool project!

Hannah had her infusion today. And received this beautiful blanket. If you're a knitter and your looking for a neat project.
Check out the Linus project.

Sleepless nights

Last night was a sleepless night. If I got two and a half hours in I would be surprised. Rashes and fevers rear their ugly heads here occasionally and I tend to react one of two ways... I can take it in stride and make the 
necessary phone calls or I can freak out. Last night it was the latter 
one.

Maybe its because I was already tired... maybe it's because I am getting 
ready to send another medically complex kiddo away to college, and because answers never seem to be available. Times like last night remind 
me of how vulnerable we are adrift in this undiagnosed affliction.

Driving home tonight with my heart admittedly anxious and heavy at all
the questions petechial hemorrhaging raises and wondering how many
doctor visits and tests this will take to find maybe an answer this time.
The Lord was quick to remind me that He and I have a history and He 
has never failed me yet. Trust is not always my strong suit I kind of like
to have a plan in place. This whole experience has taught me the only 
control I really have is over my attitude. I can choose to trust God or
I can choose to wallow in self-pity.

We have approximately four weeks till our girl heads off to college. Which 
means we have a lot to do medically and otherwise to get her and us
ready. As always we covet your thoughts and prayers. Right now this is
my anthem song.

Things have been busy around here.

It has been a little quiet around here on the blog, but things have been terribly busy here at the Lauffer house. We have just finished our 16th year of school at home. Which just happened to coincide with this girls graduation.

Three down and one to go! Its kind of a bit surreal to think in 3 years time 

we could be done with such a significant and integral part of our lives. But 

time marches on...

Now the days will be filled with getting her ready to start college this fall but before that happens we have one big dance recital to go. So this coming week will be show rehearsal week which will be very busy indeed. This week I will be juggling the role of dance mom and baseball mom. Today we had 

her infusion. It is helpful that it fell the week at the beginning of rehearsal 

week we are hopeful it will give her some pain relief.

Cody has returned from school with approximately one semester to go and will be working on an internship this summer. We had his appointment with the geneticist at Hopkins which raised once again more questions than answers. However, it was rewarding to see him be his own advocate and 
ask questions himself. It can be a difficult task to self-advocate so I am thankful to see him doing it.

Life is a series of ever-changing, ever-growing events. Sometimes these events are small and without fanfare - you may not even realize they are happening until some distance has passed.  Some events are obvious like graduations, weddings, and others, but life is lived mostly in those little unnoticed moments.

Watching my children learn and grow has been a privilege, one I am ever so thankful for. Some days were and still are hard, really hard, but so very 
worth it. Learning to parent adults that's not been any easier than it was to learn to parent littles. Life can be ever so messy and yet ever so wonderful.
I am endeavoring to embrace the chaos because I have learned that there
are just as many lasts as firsts and I don't want to miss any of them.

Longing for Spring

That is one good thing about this world...there are always sure to be more 
springs. LM.Montgomery

The Spring seems to be slow in coming this year. I am beginning to feel trapped 
in a Narnia ruled by the White Witch- always winter but never Christmas. Every 
time the weather seems to break snow threatens or storms back into view.

Today I am sitting in the hospital sitting with Lucas for his fourth Remicade 
infusion, and pondering life. Usually, while I am here I work on lesson plans, 
ACT 48 coursework, and occasionally blogging. Someone said to me recently I 
feel like your always at the hospital... I had to chuckle and say that's because 

I am.

I am missing home infusions well because I could be at home for one and two 
coming to the hospital two Sundays a month can be disheartening. But
its safer so for now here we sit. I am very thankful for the opportunity to do 
them at our local hospital pediatric floor for it means no long drive and being
able to come on a weekend and not have to miss more work.

Michael has been having difficulty with his one heel. It appears he has a bone 
spur and is fighting a bit of gout. The other not so pleasant issue is he has some
edema-indicating his heart is not doing as well as it could be- if you pray for us
we would truly appreciate those prayers now.

The black-eyed susans and daylillies are poking their way up through the soil
around my home along with other spring flowers determined to thrive despite
the bitter cold wind blowing around us. I want to be like these tender shoots, 
tender and yet strong. Yes, things are hard but something beautiful will come 
out of it.That's the promise and I am holding on to it.

Snow days are for coffee, blogging and cooking!

Snow, lots and lots of it is coming down fairly quickly here in my little area of south-central Pennsylvania. Which means one thing for me a SNOW DAY!

I got to enjoy a nice leisurely cup of coffee this morning in my PJ's at 7:30.
Then I had to dig my way out to the chicken coop to let out the girls. My girls were not that excited about the snow. 

A highlight of a snow day for me is getting to spend the school day with
these two kiddos. So Lucas and I are navigating Biology and Literary 
Analysis & Comprehension. Hannah is doing Physics and Honors British 
& World Literature.

While the kids are plugging away at these subjects I also get to cook!
So for lunch, we are having deconstructed pizza and brownies. For dinner, simmering away in the crockpot is a big batch of buffalo chicken soup!

Food and nourishment we will need for the big dig out. The soup and pizza are Keto recipes. For the pizza, I used Rotel tomatoes instead of just diced ones. Lucas noticed the chilies right away. I said they add a little kick, he said more like a solar flare. I just love this kid sensory issues and all, he makes our lives interesting!

How are you spending your snow day?

Sometimes life is a blur & Remicade seems to hold a lot of weight

Last weekend was a blur. It was filled with the usual things like driving
practice and Company dance practice for Hannah and then some.  

On Thursday Lucas started with what appeared to a small cold, nothing too 
worrisome. By Friday evening his temperature had risen to 102.6... okay 
not too scary but a red flag because although he has had small fevers, 
he does not typically present with a fever while flaring. However,
since he had a Remicade infusion 2 weeks prior and with the addition
of methotrexate infection is a real possibility. So I attempted to schedule
a doctors appointment for Saturday. Saturday appointments were filled
and they decided to see him Sunday morning. Lucas's body had different
plans. Around 8:30 Saturday evening even with fever medication all day
long his temperature spiked to 103.9. So more medication administered
and his temp check an hour later registered 104.3. That meant a trip to
the Emergency Department.

Thankfully the ED was not very busy and he was triaged fairly quickly.
Usually, I have to go into great detail about the medications these guys take
almost no one has heard of Actemra, not so with Remicade. Because
of the name Remicade and the combo of Remicade and Methotrexate
together this was all taken very seriously. Which is crazy because any biologic should be taken seriously. Lots of bloodwork, blood cultures 
were done together with a chest x-ray and nasal swab.

The final verdict RSV and pneumonia. So after two rounds of IV antibiotics,
he was admitted upstairs to the pediatric floor.  We stayed on the floor
for another round of IV antibiotics and lab work before being released 
home with oral antibiotics and instructions to hold his methotrexate this
week.

I am sitting in my comfy spot thankful this weekend is looking much different.
Yes, it's still filled with driving practice and company dance practice, errands
a youth group event and church. I'll take it over last weekends type of busy hands down. 

Last weekend

  Later in the week.                                                                                                 

Rare disease an adventure

I was more adventurous in my younger years. I did journey 8hrs and 500 miles away from Pennsylvania to a sweet little town called Lost Creek, Kentucky for my first teaching job after college. It was there I met and married this sweet guy and started an adventure of a lifetime. Twenty-six years and four children later life the adventure continues daily.

This disease has been and continues to be an adventure. The dictionary
defines adventure as 1. an exciting or very unusual experience. and 2. a 
bold usually risky undertaking: a hazardous action of uncertain outcome. 
Check and check.

People often ask what exactly is it? I have to say well our "working 
diagnosis" is Systemic Onset Juvenile Idiopathic Arthritis because we 
think it could be that but even the experts are not sure. So... the search
for a diagnosis... is an ongoing you guessed it adventure.

The downside to this adventure is fever, rash, swollen lymph nodes,
enlarged liver and spleen, inflammation of the lining of the lungs and 
or heart and the list goes on and on. The newest plot twist
sensorineural hearing loss. So the quest for a diagnosis continues.

Yet there is another adventure playing out simultaneously in my life.
My walk with God is the most wonderful part of this journey. The stakes and rewards are great and enduring. He is my strength when I can't go on.

Quite frankly I don't know how I would get through some of the difficult days without Him by my side.

Seeing with eyes of gratitude

This past week many people celebrated their love for one another. Some

more lavishly than others ~ some struggling since the person of their dreams seems nowhere to be found. We celebrated quietly. 

I came home to a quiet house that I share with this guy that captured 

my heart 27 years ago. He had left a sweet note on the whiteboard in the kitchen before leaving for work, the kids were all at engaged in various

activities, and I could enjoy the peace and tranquility.

I am learning to see my life with eyes of gratitude. I believe our desires will not ever really be satisfied by well carried out date nights or grandiose expressions of love, or even happening upon the love of our lives... until we 

learn to see gratefulness in our ordinary everyday lives. We need to learn to be people who love and embrace what we already have. I am learning to 
embrace the provision of the Lord in the circumstances I have not asked for 
and in that same vein, I am learning in marriage to be the love I want to receive.

“Be completely humble and gentle; be patient, bearing with one another in love." Ephesians 4:2

"Above all, love each other deeply, because love covers over a multitude of sins." 1 Peter 4:8

We finished Lucas's first two infusions at Hershey and next month can

have them done at our local hospital. So baring any complications all infusions for both Hannah and Lucas can be done on the weekends near 
home. Tomorrow is one such day. I am grateful to be closer to home and not have worry about missing days at work. 

Both Hannah and Lucas failed their hearing screenings so... with Cody's history of the sensorineural hearing loss it's more than a bit concerning. So 
our next big adventure/appointment will be audiograms in March.

“We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.”―C.S. Lewis

It feels like it has been an ongoing battle with the insurance company

since the November Rhuematology appointments. I had an insurance

rep tell me years ago, when Lucas was little guy and synovitos showed 

up in his hip, that it wasn't personal. But I have to tell you when it's 

your child it feels very personal.

After 11 weeks without medicine, our guy is getting an infusion of Remicade.

We had hoped to start him on Actemra a medicine which has helped two 

of his siblings. However, Remicade is what insurance would approve and

so after much debate and consternation, Remicade it is. 

I heard someone say once "fear the disease more than the medicine" ~

but truthfully I fear both. I fear the side effects and the cancer risk of

the meds and I fear the inflammation his innate immune system can 

do to his brain, eyes, ears, joints and organs etc...

So today here we sit at Penn State Hershey Children's Hospital getting 

the first Remicade infusion. Remicade(infliximab) is a chimeric IgG1k

monocional antibody used to treat several inflammatory conditions.

A chimeric antibody is an antibody made by combining genetic material

from a nonhuman source, like a mouse, with genetic material from a human being. These antibodies then block the action of TNF Alpha and reduces inflammation. My defense mechanism when faced with medical concerns is 

to research.

I looked everywhere to find someone else's experience so we would be 

able to have an idea of what we were facing and couldn't find anything.

So I thought I would document today in case someone else is looking.

We arrived at the hospital at 9 am. Lucas had his vitals checked, IV 

placedand blood drawn, two tubes. He was settled into his infusion room 

and given Solumedrol through his IV which took about 15 mins and then Benadryle through the IV for about 15 minutes as well. He had a small 

reaction to the IV Benadryle, his arm felt like it was burning. It was almost 

done so they placed hot packs on his arm for comfort and made a note to 

dilute the Benadryle more and run it slower next time.

Around 10:30 the Remicade was started. The nurse told us it will run

for two hours and ten minutes. She will come in every fifteen minutes to

increase the speed of the medicine and check his vitals every 30 minutes.

Then he will be observed for an hour before heading home.

And pretty much how it went. He didn't have any big reaction to the meds.

The nurse did tell us that most reactions happen on the 2nd infusion, so 

we'll cross that bridge when we come to it, two weeks from now. He was 

very pale toward the end of the the infusion.  

He was very sleepy through out the whole infusion but never fell asleep.

He was thankfully not terribly grumpy. Now we are in the observation 

process and he is looking toward lunch. 

I was thinking about the above C.S.Lewis quote. I was a young child

when I sensed God's presence and often when pressed I can truly

say I don't know how to do anything but trust Him. Innately I know

that He has our best in mind. But the journey has many highs and lows

these medical struggles are definitely lows and yet He is here with 

us. Just like Daniel in the lion's den. He is Immanuel God with us!

Which means he has the power to turn whats hard for us into

something good for us.

What I want for Christmas

The other day I was asked the question 'what do you want for Christmas?'
and I said hmm I don't know I'll have to think about it.  Today sitting in the hematologist office the answer came...  I want this illness and all it entails to take a vacation.

The reality is no illness takes a holiday. In 2003 the holiday season started 
with Cody spending 10 days in the hospital at Thanksgiving. Last Christmas Hannah could barely walk without feeling faint. This week we are battling with the insurance company once again over medicines.

Illness doesn't stop because you have special plans or a lot to do. We have
sat out of many holiday activities just because of no energy for said celebrations or just too many germs floating around to be exposed to right before an infusion. Everyday seem to be a new fight, with some good days and some bad.

Today was a day mixed with good and bad. The good news is Hannah's iron
levels are holding steady. Which means the Actemra is helping to keep the disease in check and resulting in less anemia. After a crazy busy exhausting yet thrilling show week this is a victory and praise report. But.. In my last post I said Lucas was switching to the new infusion medicine Actemra, well insurance is refusing this until he has tried Remicade. Remicade is a med we have tried to steer clear of it has more side effects and risks but does work wonders for some people and with the psoriasis patches Lucas has been 
experiencing may be a winner.

We have to have another Orencia infusion at home, and we had already 
been discharged from home health because of the medicine switch. Then
the first 2 Remicade infusions must be done at Hershey.. chance of a 
reaction are very high with the 2nd infusion. So after those two then we can switch to our local hospital and not have to play "Rock,Paper, Scissors" on
who gets to try and take off work to hang out with our sweet guy at the 
hospital. Oh and its January these two infusions are scheduled for so we 
work around bad weather and again have to be hyper vigilant to avoid infections.

I am not likely to receive my Christmas wish of a holiday from this illness,
however a line from Sundays teaching has been a lifeline on days like today "God won't always keep you from trials -but He'll always keep you through
trials".

We are learning to not grieve the things missed but to take joy in the
opportunities we are able to partake in.

Be joyful in hope...

         

       Be joyful in hope, patient in affliction, faithful n prayer. Romans 12:12


  Its dance rectal week here in the Lauffer house. It will be a long and yet
rewarding week. Two nights of practice, two dress rehearsals and two performances... so yes a long week. 
  In order to be able to dance like this:

   This has to happen:

   It's a joyful month as we celebrate Christmas. We celebrate in defiant 
hope. Circumstances are not always joyful. This is a three possibly four 
infusion month. For the past year, we have been able to have biologic 
infusions for our two youngest in the comfort of our own home. While
 this is not always easy, it means a little less running and juggling for mom keeper of all appointments. This month we changed biologics from Orencia 
to Actemra for both kiddos.
   Actemera cannot be done at home. Bloodwork has to be done before the 
infusion and IV prednisone and Benadryl must be given ahead of time. It
is a bit more dangerous so we have to have them done in the hospital.
Hannah had one this past Sunday and will have another in 4 weeks on the 
30th. She may also have to have an iron infusion that is pending the
iron panel results.
   This month Lucas switches to Actemra as well. Which means we are going
to become fast friends with the nurses on the pediatric floor of our local hospital.
   On this journey, we are traveling we deal with two types of people. Those 
that will tell me I don't know how you do it you are so strong (believe me 
when I say I am far from strong - but you do what you have to do
especially for your children) and those who know what we are battling daily and think we are overreacting. Both are hard to respond to... I am not brave and I don't feel very strong I don't want to be put on a pedestal. But until you've juggled my schedule or cried and prayed over medicine changes, side effects etc. be overly critical either.
     We celebrate a defiant hope. I think I've shared this passage before but I am going to share it again because she says it so much more eloquently than I and it speaks to me so much right now. 

"This is not the way it’s supposed to be. All this sadness and bad news and dying. All these anxious phone calls, wars, scary test results, car accidents, terminal diagnoses, ruptured marriages, dogs with cancer, infertility, prodigal children. We hate it, not only because it all hurts like hell, but because eternity itself is encoded in our hearts, telling us that things should be different—in fact, will be, someday. But that doesn’t seem to help much when we’re staggering beneath the bereavement of the way things are. Of course, we feel this way—of course.But it’s only when we bare our hearts to the pain of this brutal paradox, that our hearts are fully open to the beautiful mystery: God sent His Son right into the very middle of this mess. He broke His centuries-long silence with a baby’s cry. Almighty God became helpless, humble, vulnerable to the hurts and evils of this world, so that we—and our hurts into the bargain—might be redeemed. What on earth does redemption mean but to get back all that is rightfully ours, not because we’re good enough, but because we’re loved enough. Not because we deserve it, but because it’s the way God wanted it to be all along. The story is clear all the way through the Bible: God doesn’t want our sacrifices and our stuff—He wants our hearts. And I believe that He is gathering up everything that has ever broken our hearts to make it all right again in our redemption. I don’t claim to know what that means, particularly this side of heaven. But if there’s one thing I’m not afraid of (and, believe me, there are plenty of things I am!), it’s that God will turn out to be less loving, less good, less tender than I always hoped He’d be."-Lanier Ivester

  My hope for you all this Christmas no matter what you are going through is
that you would know that God is not limited by appearances or bound by our circumstances. And my friend if you’re hurting this Christmas, know you are beloved of a God whose special concern is the brokenhearted.
   

  

  
     

Shifting my focus.

I had an epiphany driving home from dance yesterday.  I have said before anxiety is often an unwelcome guest in our home. Sometimes I think we focus on little things to be anxious about because the big things are just too overwhelming. So, for 


example, I could worry about the scar an IV treatment will leave, instead of the scary medicine that is filling my child's body. 

My youngest came to me a couple days ago with a request for jeans. He's had a bit of a growth spurt and needs a longer length. I explained that I 
know he needs them and I am working on it. He reminds me every 
couple days. He's anxious about many things but this is the smaller thing
to obsess over.

My epiphany was this... I come to God the same way. My worries are bigger
but I tend to forget he's working on it and has everything under control.
I come with a basketful of troubles it seems, we have two infusions this 
week, I came into the month  $XWY behind, I am a month behind on the 
house and a half a month on the car and its 50 days till Christmas. Lord, I 
don't feel good, I'm struggling how do I do this?! 

I hear Him say to me the same things I whisper in my youngest ear,
" I'm working on it buddy, I've got it under control" and "you don't have to do this on your own TRUST me". The difference, of course, is that I have very limited resources and He has unlimited!

I said before I have been trying to remember to take joy in the small things.
That shift in thinking is a work in progress for me, some days are better than others, I'm getting there.

Here's something I am thankful for although it stinks to have to take my beautiful girl to the hospital for an infusion, we are surrounded by nurses
that treat us like family (helps when you've had more than one kid as a frequent flyer) and that I can be here with her. I am thankful that 
we get to do my son's coming infusion in the comfort of our own home. I am thankful that Cody's meds can be done sub-q and he's doing okay with those.

Mostly, I am thankful for true friends who love across the distances. I am thankful for friends that speak truth into my life even when I don't want to hear it. I am thankful for friends who uphold us in prayer when life gets dicey and are just present when I need them.