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.

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.

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.

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.

Updates

On Monday, we had Hannah's cardiology appointment, the good news is her heart is showing no damage from the under oxygenated red blood cells. Tuesday at Hershey she had her iron infusion. Per her Hematologist, the hope is the iron infusion will boost her levels and provide her with some relief.

Repeat iron infusions will be determined by labs and if she can maintain her hemoglobin level.  The doctor suspects she will have at least one more. Infusions can be done every 4 to 12 weeks depending on her levels. IF for some reason this does not help the issue then we will have to determine whether or not her bone marrow is functioning and if a blood transfusion is needed. So we, of course, are praying that the iron infusion(s) do the trick.

Our evening was rocky. Hannah had a bit of a reaction to the iron after we returned home. She had a normal reaction of nausea, joint/muscle pain, and headache but, she had a rare reaction of a high fever. So we played phone tag with

Hematology and Rheumatology for a couple hours. When morning dawned she was 

much better.

Wednesday's infusion was but tricky because Lucas is a hard stick. So after 4 attempts we finally got the IV in. The rest of his infusion went with out a hitch!

My appointment Thursday was a bit more complicated. My IgM levels are 

continuing to drop so... they are waiting on some titers to come back and then depending on what they read I will have to be revaccinated and then tested 

again. The possible outcome being IgM deficiency and then treatment would 

be IVIG every so often and possibly prophylactic antibiotics.  The other 

possibility is that I am dealing with Myeloma so I am being sent to Hematology 

to rule that out. Until then we pray and keep soldiering on.

Friday was a long day...LONG .  We left the house at 10 and returned home at 6.  Actemra is a longer infusion because blood work must be done before hand to 

check liver counts to make sure it can be given. Hannah was a trooper and so 

far has responded well.

Many thanks to all those that prayed us through this week! We covet your continued prayers. 

A high point this week is that our chickens started laying! It's just the first week

and from the 3 girls,we have 7 eggs!

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.

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.
  

    

     

 

My youngest daughter reminded me its time for a blog post.  :)

Quite honestly I have put off posting because I don't want to come across as whining. So often lately I have just wanted to whine. Like a little kid who crumples on the floor and who is crying its not fair.

I ran across this quote a month or two ago by Skip Heitzig  and the truth behind it sustains me. "The storm didn't last forever, and your storm won’t either. Trials, difficulties, storms are seasonal—they are not 
perpetual. God knows  what you can take. God knows when He should 
show up. God knows when the deliverance should come—and it will." 

As much as I and my kiddos thrive on the routine school gives us, I enjoy 
the summer break from deadlines etc,. We are still learning its just a bit 
slower paced and more self directed.

This has not been a summer that has been lazy and enjoyable. This summer there have been no refreshing vacations and time away. This has been a summer to "get " through to survive through if you will. It's been a stormy season of life. It has been important for me to remember that it's just that a season. To remember that we have weathered storms in the past, that God has been faithful, and  He is STILL faithful, we shall weather this one as well.

But we are still in the midst of a storm and storms can be very scary to
experience. There is a fine line I believe in being honest about your life,
carthartically sharing if you will and over sharing. So I will spare you the
details of our storm. Suffice it to say medical and financial issues are at 
its root. And if you are a reader who prays for us we GREATLY appreciate
your prayer support.

We still have Cody's kidney issues to resolve, we have a plan of action
(sort of) and just need the opportunity to get it started. How is it he is
going to be a junior in college? When I started this blogging he was in 
middle school...

Our Rachel has started her 'real' job as  a college graduate and we all
know how scary and exciting that can be. We are so very proud of
her accomplishments and the way she purposes to do something and 
does it.  When she was little I would have said she was headstrong but 
maybe determined is a better way to describe her. She is such a blessing!

We will get through the next couple weeks. This season will end and a new one will begin. The challenge will be taking what we learned from this season into the next.