Miles to go before I sleep...

"The woods are lovely, dark and deep, But I have promises to keep,   

 And miles to go before I sleep,..." “Stopping by Woods on 

a Snowy Evening" by Robert Frost

       As I look forward to following week, the words from this poem echo 

through my mind. To say that next week will be rough is an understatement.

Just the thought of it makes me want to crawl in bed and cry. Part of it is

that before every specialist appointment there is a hope ~ a hope that

this will be the appointment that will reveal an answer, a diagnosis ~ but 

more often than not it just leads to more questions.

    Since December, well even before, Hannah has been suffering, struggling

with 'Anemia of Chronic Illness'. But she also has been dealing with an issue

of getting breathless and dizzy with exertion ~which made dance and its

recital very difficult as well. Right after she left for her missions trip it was

decided a trip to Cardiology was in order. So first thing on next weeks 

agenda is her Cardiology appointment.

  Because Hannah anemia has gotten so bad on Tuesday we have an iron

infusion scheduled at Hershey Children's Hospital. Now normally a 45 

minute to an hour drive is not THAT bothersome but, the 

appointment/infusion itself will be 4 to 5 hours long and because this 

is an unknown it is causing a bit of uneasiness. Plus it makes for a long day.

  Wednesday, Lucas will have his regularly scheduled Orencia infusion. Just 

his normal every four-week thing. Although it is a regular "normal" thing it

is never easy.

  Thursday, well it's my day. A sweet soul said to me earlier make sure you

do something for you in these two weeks (we have 2 weeks from the end of 

ESY till the start of school) ~ I do not think this is what she had in mind.😏

But I have an appointment with Immunology for me. The past couple of

times I have had labs drawn my IgM's have been pretty much nonexistent.

This could be the reason I was sick so often last year and why although

Enbrel help my joint issues I just couldn't stay well enough to take it 

regularly. This is another one of those things that could potentially give 

answers or just more questions.

  Finally, Friday brings a change in infusion medicine for Hannah. She is

switching to Actemra. A long time ago Cody had these infusions but was

able to switch to sub q injections at 19 and he has done quite well with

them the past couple years so we are hopeful this will be a good 

switch for Hannah. However, this also means hospital infusions since

Actemra is not approved for home infusions. Also, the first couple must

be done @ Hershey before switching to our local hospital. So Friday back 

we go to Hershey for that.

  If you pray for us, prayers for peace and just overall endurance would be

greatly appreciated. In the midst of all this, we are trying to get ready for

our upcoming new school year with a high-school freshman and 

a junior/senior. 

 And the next week you ask? Well, I do better if I just take one week at 

a time. 😉 

  FYI August is International Autoinflammatory Awareness month. Please

hop over to The Autoinflammatory Alliance (autoinflammatory.org) and 

learn more about these rare diseases.

'Yurt'ing It and Rhuematology

This past weekend we went on an adventure. We camped not too far from the house at Codorus State Park in a Yurt. It was pet-friendly

so this guy got to join us. That in itself was an adventure. Flip did do very well though no barking at other dogs just some whining from time to time. Rachel, Hannah, Lucas, and Mike hiked. Hannah honed some of her photography skills.

   We sat around the campfire & ate smores. All in all, it was a nice break even if it was just 3 days & nights.
    Today we caught up with our rheumatologist. Hannah is not doing as well any longer on Orencia so the decision was made to switch her Actemera. Actemera is a bit more immune suppressive, and a bit trickier as it can not be done at home. So her first two or three will be done at Hershey afterward we can switch her to our local Hospital. So her chest x-ray appears clear 
and we consult with Cardiology in August if they find nothing amiss 
we will check her pulmonary function ~ still trying to get to the bottom of 
the dizziness and breathlessness upon exertion. Along with the new 
Actemera infusions we have an iron infusion set up in August as well.
    Stranger things Lauffer style continues this week as Lucas noticed a rash on his feet and ankles which appear to be per rheumatologist petechiae.
That is a new rash for us... he also has some low white cell counts so before
they raise his current dose of Orencia they want to see want his next labs 
show. He is still having a great deal of pain in the left hip/ knee/ heel areas.
    What made the mini vacation so special is it offered a bit of normalcy.
There were still pills to pass out and ice packs at bedtime a couple of nights
but it was a much-needed break. 

NIH June 2017 Trip

    I want to say good things about this trip. But the truth is... we left the clinical center on Thursday feeling a bit adrift. When we heard about the NIH as a possibility 12 years ago we were so excited... and don't get me wrong they are doing wonderful things there and have helped so many. We just are not a success story of theirs, at least not yet.

    It is discouraging to baffle some of the best doctors in the field. Yet that's what we seem to do. The past year Cody has had more pain and more 

fatigue. He also has probably had more fevers as well but since he doesn't chart his temp when he feels bad or track things it's hard to see a pattern. 

Hey he's in college, this is a self-advocacy skill he needs to start using, I am not there. Since he has been on almost every biologic at this point his team 

is at a loss.  Because he is having more issues with his hands they did 

x-rays of them and of course more blood work. Only 10 tubes this time.

They will be contacting him for another visit or at least with a plan in the near future.

    His body habitus and the stretch marks on his back came up again. So

they are referring him to a Doctor at Hopkins, she is a specialist in Marfan's.

And that was our visit in a nutshell. We came back to the Children's Inn and

I collapsed on the bed and slept for 2 hours. I tend to sleep when I'm overwhelmed, well that and cry, and to be honest I did both. 

    While checking my email at the Inn, I received an email from Hannah's

rheumatologist. He is concerned that some of the symptoms she has been

exhibiting breathlessness, low bp, sometimes dizziness - although she is

very anemic may not be from the anemia and he would like her to see a cardiologist for a consult and possibly have her pulmonary function tested.

Considering we just put her on a plane with the youth group for a missions trip in the Dominican Republic this tests my faith.

   While writing this hematology called to schedule an iron infusion because

her levels have again dropped. So there's that ... oh and I start work again on Monday for the summer

session.

   Yesterday after returning from clinical the verse that was pounding through my head was Proverbs 13:12 Hope deferred makes the heart sick and I was definitely feeling heartsick. But the Lord gave me this one to chew on instead Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.

Being strong and courageous is a challenge to be sure.

Baseballs, Point shoes & Chickens oh my!

May is a very busy month for us. We are wrapping up school for the year.
WooHoo! This girl turned 16!

We are also busy getting ready for the spring recital and the spring baseball
season is well underway. So we have this happening...

  And it has been raining a great deal which makes baseball and dancing more of a challenge. My own feet and ankles (and knees etc) make heading out to work more of a challenge as well.                                                                            Any free time has been spent with these girls. At 11 and 12 weeks they are something else. We had something small trying to tunnel under the coop.  So we moved it closer to the house. We also put a hardware cloth 

skirt under and around it, then mulched and set stones to add more weight to the skirt. 

This is Dixie she is very inquisitive. She also likes the have her picture snapped.

This is Josie in the lower picture you can really see her lacing coming in.

                                                                                  

Then here is Lucy she is definitely top of the pecking order.

And a few pictures of the new coop situation.             

                    

                                                                        

                                           

                         

April showers bring flowers, mud puddles and weeds

We have had at least a week of rain... yes, yes, I know April showers bring May flowers. But do you know what else April showers bring? Weeds. Yes,

the flowers coming up but so are the weeds. In fact, they are coming 

up faster than I can pull them. 

And then there is mud. The girls moved into their new digs last weekend and

they are enjoying digging around in the mud for worms.  We have a new 
feeder and waterer system to put in that we planned on doing this weekend

but the rain stalled that idea. Keeping their water clean in all this rain is a full-time job.

We managed to make it through March and most of April without a huge

health scare. I mean we still have the platelet issues and Hannah's iron/ red 

blood cell thing going on...but, Easter was relatively quiet. Very thankful 

for a respite.

I was thinking back to when Cody first started having infusions and on months when we would have 2 the trauma would sideline me with depression. Now with both Hannah and Lucas having them, we do at least 2 sometimes 3. It's amazing how it just becomes normal.

My friend who visited us just recently, who has her own barrage of medical people coming in an out, said (when talking about our cart of medical supplies) 'Oh, doesn't everyone have that in their living room? 😉.' It's

become old hat but never gotten easier. What does make it worthwhile is to see Luke on the pitching mound and Hannah leap across the stage at dance. It gives me perspective, that while those things are not painless activities for them... they able to do them which might not be an option without the medicine.

  

Life is all about choices. I am choosing joy!  I will take the mud puddles and the weeds for the flowers.

The chickens are here!

     So those of you that know me may know that for a couple of years now I have wanted chickens. My sweetie finally caved and as a combination birthday anniversary gift, we welcomed three new littles into our household last week.

     We have had the girls for a week now and they have been a tremendous
 amount of fun. We are using their coop as a brooder box in the downstairs.   We, of course, did not attach the roof or run to it and the nesting boxes are closed off for now.                                                                                 

   Dixie and Lucie were two weeks old and little Josie a week, but she seems to be holding her own.  This week Lucie and Dixie have been getting tail feathers and Josie is losing some of her fuzz.  Stay tuned for my new distraction from life's craziness!                                                                                         

                                                                               

A cup of tea...

Life is like a cup of tea, it's all in how you make it! ~Irish Proverb

I can't believe that we are already over a week into March! February was
a brutal month.  I and at least one other kiddo were sick twice with a 
monster of a cold. twice in 29 days how was that even possible?

Some positives came from Cody's  nephrology appointments. The CAT scan 
showed only two small stones in his left kidney. One was very tiny and 
the other appeared to be dissolving on its own. Woo hoo! No treatment 
necessary just to keep daily fluid levels up.

Our Rachel had a dip in some lab numbers we think may have been due to the
monster cold, she will be touching base with Hematology to be on the safe 
side. Our other hematology nightmare with Hannah continues... although 
serum iron levels are rising her hemoglobin and ferritin continue to drop. So
the plot thickens so to speak.

We have approximately 52 days left of school here at the Lauffer house! 52
days till our youngest is officially a 9th grader!? When we started this journey
of school at home I was pregnant with him ... it doesn't seem possible that we
have been doing this 15 years with 4 to go.  

Lucas is feeling a bit intimidated by the idea of being a high schooler.  He's my
half glass full guy so change is hard for him.  We have had quite a few talks of
late about how we can look at our overwhelming situation or circumstances 
and think about how scary they are or we can look at our situations in faith.  
We have to make a choice about seeing things as half full or half empty.  This
not only helps him but it also reminds me of who I put my hope in.  Because we 
also have PSSA's in the next month which fills him and I both with as L would 
say "a tad bit of discomfort".  I am choosing to  push through the next 52 days
 with high hopes for the future. 

We are planting with the harvest in mind. Sometimes as parents we dread these
tumultuous teen years. They can be crazy but they are also short and before we
know it they are young adults. These are precious years and I want to take 
advantage of them and to sow wisely and lovingly.

   Winter is a time of promise because there is so little to do - or because you can now and then permit yourself the luxury of thinking so. ~ Stanley Crawford

    We are already halfway through January! We have yet to have any real snow, just ice, fog, and of course rain. 
We have actually had rain a lot in the past two weeks making it bleak and dreary. All the Christmas decorations are put away and it is a tad depressing.
    Just a few years ago snow days were a bonus,
a celebration even. Snow days meant a time to shelve
our books for a few hours and play. Then later bundled 
up with cocoa and blankets we could get back to work. 
Homeschooling meant we didn't lose school days to the
weather just a lovely break in the schedule.
    These days as I have to travel to work snow days don't hold as much appeal as they use to. So although I am 
not longing for snow, a break in the rain would be nice.
    For those of you asking about Cody's kidney issues ~ 
we are still seeking answers. He will be home in February
and we will have another round of doctor appointments 
to fit in and more tests to run. He is,however, doing well and not experiencing much discomfort from them.
    Our newest medical challenge has been Hannah's red 
blood cells. Last month her iron level was at 14 and she was extremely symptomatic over Christmas break. They then went to 53 and after a trip to the Hematologist, it was decided we should double her iron supplements. Only on Wednesday, we discovered that after 7 days of a double dose, she was now at 173 and way above normal yet her hematocrit and hemoglobin levels have dropped.
    Our rheumatologist is now thinking she may have 
what they refer to as 'anemia of chronic disease', which 
is not an iron deficiency but a block in iron transport 
within the body that impairs hemoglobin and red blood 
cell production. Iron infusions can overcome this block. 
It is unclear if her symptoms relate to this anemia or 
to the SoJIA, the only way to find out is to eventually try 
the iron infusions. So another enigma.
      These kids are amazing and I am in awe as I watch
them grow. They are always teaching me way more than 
I teach them.

    

     
    
     

     

Christmas Time

Christmas is my favorite time of the year! For me, it puts everything into perspective. Is it so easy to be caught up with the way things should be in contrast to the way they are. 

It is a yearly reminder that God became a man and stepped into our world to bridge the gap between the way things are and the way they ought 
to be. It's the celebration of the gift of His presence with us.

Our family is the same as others  and it is easy to be caught up in the crazy busy schedule of activities and shopping... Hannah has already danced
at the town's Christmas tree lighting and a church's Christmas festival.

Actually, it is only 12 days to Christmas and I have done hardly any 
shopping,a couple of stocking stuffers and extended family gifts. So I need to get busy!

Cody comes home this Friday and we have several doctor appts scheduled 
over his and my holiday break. Our newest complication is Hannah's iron 
levels. The past couple of months they have been low despite a daily iron supplement. Her iron levels have run at the lowest 43 (normal is 50-120).
At her last infusion blood that was drawn hemolyzed before the could get 
the iron level. At the redraw her iron level was 14, that is significantly lower. So we are in a discussion about possible iron infusions.

It's a challenge. It would be so if I were still just at home just
homeschooling,but it is an even harder challenge homeschooling 
and working outside the home. Prayers for peace are greatly appreciated.

There have been days of late that I long to pray but am just so tired I can't seem to stay awake to. So there prayer sessions on the way to and from work. There have been days when quite honestly~ when I think of all the medical issues and what they could mean, or how I am not there to help Lucas traverse these potholes with learning issues~ that all I can do while Hannah is at dance class is sit in the car and cry. I am easily overwhelmed 
when I focus on what I am able to do vs what I want to be able to do or what I think I should be doing. It's a constant battle I fight.

I read these words in the past week and I want to share them with you because they are the truth I cling to especially in crazy times:

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 in the bargain -might be redeemed. What on earth does redemption mean but to get back all that is rightfully ours,not because we are good enough, but because we are loved enough. Not because we deserve it, but because it's the way God wanted it 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.
~from Seeds of Love by Lanier Ivester 

It is my hope and prayer that we would rejoice in the fact that God did not leave all this mess unredeemed and embrace His presence.