April Showers

weather the stormApril hasn’t been our month, and that is saying it nicely.  Honestly, April has been our worst month yet on this journey.

We started out with a recheck appointment with the eye doctor to see if the inflammation in Sophie’s right eye had finally resolved.  We were dealt what I can only describe as a gut punch.  One of those doctor appointments that leaves you swirling and almost out of breath.  After 2 weeks off of the steroid eye drops, we were told that she had an adhesion (a synechia) in her eye from the inflammation.  A synechia is an eye condition where the iris adheres to either the cornea (i.e. anterior synechia) or lens (i.e. posterior synechia).  In Sophie’s case hers was an anterior synechia.  Synechiae may lead to certain types of glaucoma.  Anterior synechia causes closed angle glaucoma, which means that the iris closes the drainage way of aqueous humour which in turn raises the intraocular pressure.  So, in simplicity, my 4-year-old is at risk of glaucoma from the inflammation and adhesion in her eye.  In an effort to “break the adhesion” loose we were given eye drops to keep her eye dilated and a new steroid eye drop with a recheck scheduled for 2 weeks.

That appointment was on a Wednesday.  The following Sunday, Sophie woke up at 4 am with a fever that was over 103 degrees.  She has never spiked a fever this high this unexpectedly.  This mama was scared.  My first phone call was to my best friend who is a nurse (and who can keep me thinking rationally), then to my folks to let them know we were heading to the ER at Blank, then to Sophie’s dad.  I dosed her with Tylenol and took her temperature before we left, 103.7 degrees.

At the ER, they checked her over, gave her toys to play with, took a lot of blood and swabs… and said they didn’t see anything so suspected she was fighting a virus.  After about 4 hours, they sent us home to keep an eye on the fever and continue the cycle of Tylenol going.   At 2 pm, her fever maintained just above 102 with Tylenol and she was very tired all day.  In the middle of the night when it was time for her 1 am dose, her fever was down to 100 and I thought we were finally breaking it.

Then again at 4 am she woke up with another fever over 103 (and an hour left till her next Tylenol dose).  I was again on the phone with trying to decide the next course of action.  I decided to give her a dose of Tylenol 30 minutes early and see if it responded then head into the ER if it didn’t.  However, when I went to give her the Tylenol, I discovered she was covered in a rash all over her trunk, arms and legs.  ER trip number 2 was not waiting.

Thankfully she was seen by the same doctor as the morning before and it was discovered that she had a raging strep infection.  After morning #2 in the ER we were sent home with antibiotics and to follow up with her primary care physician.  If the fever didn’t respond or she got worse we were to go back to the ER.  Thankfully, her fever started responding fairly quickly and I was able to keep it under 102.

That night we were snuggled in bed, Sophie was comfortably asleep and I was almost there when the ER called and told me they needed her to come in right away due to bacteria growing in her blood culture from the first visit.  So, now I had to wake up a sick, tired, sleeping little girl, put the magic cream (Lidocaine) on her for the blood draw and drag her back to the ER in the middle of the night.  Thankfully, since her fever was responding to the antibiotic and she was acting more normally, they let us take her home to continue the rest and meds while we waited for the results of the second blood culture.

So, that is 3 ER trips in under 48 hours.  We were exhausted.  I was scared by how sick she had gotten so quickly.  On Wednesday, I got the call from the ER that her second draw was not growing the Staph bacteria that her first one had and they would continue to watch it for a total of 7 days giving me daily updates.  While talking to the ER doctor, I was given her official diagnosis from the ER trips… she had Strep and Scarlet Fever (caused by the extreme Strep infection and is ultimately what caused the high fever and rash) and that both were responding to the antiobiotics.  At her follow up appointment her primary care physician indicated she was pretty sure Sophie was also dealing with Mono on top of all of it because of her fatigue.  The daily updates about her blood culture remained clear, which was a major relief.

That week was the longest scariest week, constantly watching her fever to ensure it didn’t spike again.  It was scary knowing how close she had been to being admitted.  It was terrifying having to watch and know that if the fever spiked again before she was done with the antibiotic we would be facing the admission we had so far avoided.  It was scary realizing that her arthritis meds were a contributing factor in how sick she got and how fast because her immune system was so suppressed.  It was sad and fearful knowing that we had to hold giving her the immune suppressing meds until she was past the infection and that by holding those meds (in addition to her being so sick) was going to inevitably cause her joints to flair and pain to increase.

But here is what I know from my experiences that week, my daughter was once again amazing.  She took it in stride with a cheery attitude and made new friends with her nurses and doctors in the ER.  She had amazing nurses who made her comfortable and happy.  She snuggled A LOT.  She showed amazing strength.  God watched over her and protected her.  God was all around us in the loving support of my “people” who checked in on both of us multiple times every day.  We felt God’s presence when we needed the peace and comfort from our fear and exhaustion.  We saw God’s healing power as she quickly improved.  Yes, she was down for a week and is still dealing with the fatigue and pain from her joint flair, but she honestly recovered so much more quickly that I was expecting.  For that I am thankful to God for His healing touch.

We had the 2 week follow up on her eye, the adhesion has improved but is not completely resolved.  We are finishing up the second week of a stronger dilation drop and steroid and are hopeful that at her follow up this week her eye is completely cleared up from the adhesion and inflammation.

We go to Iowa City to see her Rheumatologist the week after next and are preparing for another medication change if her eye hasn’t cleared up.  We are preparing for her to under go general anesthesia the same week in order for her GI doctor go scope her and try to determine the cause of her GI troubles.  They will be checking and testing her for Inflammatory Bowel Disease, Crohn’s Disease, and Celiac Disease.

We are praying for all good news in the next two weeks.  They say that April showers bring May flowers.  We are hopeful that the storm and showers we experienced in April, produce the good news and blessings of May flowers!April Showers

Warrior Mama, Warrior Child

Stay strongIt was 5 years ago this month that I received the amazing news that I was pregnant with my little miracle.  My heart was filled with so much joy, amazement and fear.  I new this little one was a miracle gift from God and my life was being blessed more than I could imagine.

Over the past 5 years, I have been reminded daily how truly blessed I am to be her mama.  Her free spirit, independence, strong will, faith, humor, and tender, loving heart have not only filled me with so much to be thankful for but have shown me unspeakable truth about what strength, hope and faith in God are capable of.

Fast forward 4 years to 1 year ago this week.  Our journey with JIA unofficially began when I noticed the unexplainable swelling in her left knee.  In all trials, we learn even more about ourselves, our strength, our faith and about unconditional love.

This past year has been a roller coaster for sure.  There have been plenty of valleys where fear, frustration, and sadness resided.  There have been hard, long, steep hills where we have had to climb not knowing if we were making the right medication & treatment choices, what the next test results or doctor appointment would reveal.  Pushing through pain, fatigue, and illness to climb to the top and keep moving forward.  There have been the amazing peaks where we have experienced the answered prayers, temporary relief, faithful peace, felt the love and hope, and embraced the good days when we could relax and coast in the present moment and fun.

In this past year, I have learned how to be a mom of a Warrior Child.  I hate the terms chronically ill or medically fragile.  I recognize on a medical level these terms apply to my daughter, she is immune suppressed on chemotherapy and TNF inhibitors.  She is constantly in a state of medical risk because of her medications and she lives in a constant level of pain (some days worse than others), we are constantly trying to be proactive to avoid any permanent damage or disability while she grows and develops.  These are facts about her medical condition and they are very scary facts we are always aware of.  At 4-years-old, she talks about her doctors being on her team and part of her family.  She doesn’t understand the facts and big picture fears, she just knows these doctors are trying to help her feel better and that they care about her.  These facts do NOT define my child and they definitely do NOT describe my child.  Honestly, they do not describe ANY child who is fighting a chronic illness, disease or medical battle.  My child is a medical warrior.   Our children are warriors!

Over the past year, I have seen Sophie fight with a strength that inspires everyone who meets her.  She pushes through her pain, fatigue and illness in a way that most adults would not be able to endure.  On all accounts she a normal 4-year-old little girl who wants to sing, dance, and play in the garden.  One day she wants to be a doctor to help other kids, the next she wants to be a police officer, and the next she wants to sing like Elvis does.  She has a future she is excited to see.  She has an amazing faith in God that brings peace to our journey and reminds us that He is ever present protecting and guiding us on our journey.

She also has her times when she just needs to be cranky about it all, times when she has trouble communicating what is wrong or what she needs and she just needs to cry… honestly I think she is entitled.  As a Warrior Mama, I have my times too when I need to cry and just release it all.  It is in these moments, in our safe haven, where our strength  and love truly shine.

The homily from church last week has really stuck with me and been my constant reflection this week as we passed the one year anniversary.  He said (in summary) that when we are suffering and going through trials, we need to do three things: accept our trial, suffering and cross, do at least the minimum of our part that is within our ability, and make our suffering & trial into a living prayer.  We can not only “offer up” our suffering to God but we can do so in a way that makes it a prayer for ourselves and others.

I don’t know what our future journey holds or where it will take us, but with our faith and hope I know our journey will take us where we are intended to go.  I also know that I am thankful and blessed by God to be chosen as the Warrior Mama for this amazing Warrior Child.

Answered Prayers

answered prayersThe answers to prayers come in many different ways and when the time is right.  I know, believe, and am witness to prayers being answered exactly as I had asked, differently than I had asked, and even with an answer of no.  God answers all prayers exactly as we need them to be answered.  If you reflect on your life with an honest faithful reflection, you will see the times where God has done this in your life as well.  I prayed to become a mom for over 8 years, and at the time I was feverishly praying God’s answer was “Wait, Not yet”.  It broke my heart and was hard at the time, I didn’t understand then that the answer was “not yet” and had to accept what I understood to be a “no” answer.  Then I was blessed with my beautiful little miracle.

Ever since Sophie received her JIA diagnosis, we have prayed and prayed for healing and a cure.  We have said prayers of thanksgiving for and asked for God to watch over her doctors and to give them guidance in her treatment.  We have prayed for pain to decrease, inflammation and blood markers to improve.  We have prayed thanksgiving for our support network of family friends and asked for God to keep watch over them.  We have prayed for understanding, patience, and wisdom to make the best choices for Sophie’s treatment.  We have prayed for strength and bravery for both Sophie and her family.  We have prayed to help other kids and support the research, advocacy, and awareness of JIA.

Today was another one of those days filled to the brim with answered prayers!  We traveled the 2 hours to see her Pediatric Rheumatologist.

Answered Prayer 1 – We made it to a 3 month recheck appointment without having to make the trip sooner… and even had to delay that appointment by a week because of a snow storm.  This was an amazing feeling.

During the visit, we talked about her progress and how she had been doing over the past 3 months.  She had her examination and did amazing talking to her doctor and answering questions.  She had no tears or challenges with the manipulation of her joints.

Answered Prayer 2 – Sophie received strength, bravery, peace and comfort during her examination.

Answered Prayer 3 – While the disease is still very much active and we are not even close to beginning the remission clock, her inflammation has greatly improved and is almost completely resolved.

Answered Prayer 4 – Her left knee straightens completely with no resistance.  This knee is the original knee that presented with arthritis and we have worked hard over the last 6 months with her PT and knee braces to re-stretch the tendons to prevent any permanent issues.  We have prayed a lot about this knee and for progress.

Answered Prayer 5 – Her inflammation is decreased enough in her ankles that she can have the molds made for her feet and get her foot braces made in order to start working on her ankle strength and support.  We have had to delay this step of her therapy since August due to the inflammation in her ankles.  It was such good news to get the green light.

Answered Prayer 6 – We went for her 3 month lab work and waited patiently for a Child Life friend to come with some toys and distractions for the lab draw, Sophie received strength, bravery, peace and comfort during the lab draw.  She didn’t shed one tear or put up any “normal fear of needles” resistance.  She didn’t even make any indication that she felt the needle go in for the blood work.  She even thanked the lab technician and wished her a Happy Valentines Day.

Answered Prayer 7 – We were asked by her doctor to participate in a 10 year study being conducted by Duke to track the progress and medical journey of her disease and treatment.  This will give them valuable information from patients that will hopefully help future kids with diagnosis, treatment and medication access.  When talking to Sophie about it, she said “It makes my heart feel good to help other kids with artritis and to be a part of the team.”  We were the first family for our doctor to be asked to join the study.

Answered Prayer 8 – On our way home from her appointment I got a call from the doctor.  I’ll admit my heart stopped when I saw their number on my phone.  She was excited and said she just couldn’t wait to call with the good news.  Sophie’s lab results were already back and ALL of her markers where normal.  Her Sed rate which was 3x higher than normal is now normal, her anemia has resolved and is in normal range, her liver function and kidney function are normal.  Her blood work looked beautiful!  I will be honest, I cried.

While we recognize we still have a long journey ahead of us and everything changes from day to day with JIA, we are so very thankful to God for the prayers that have been answered.  It felt so good to be going home from an appointment with positive news instead of more joints and more inflammation.  Yet, even with disappointing news, we have learned how it helps us grow in our faith and brings us closer to God for comfort and strength.

We are embarking on a new medication (Humira) which we pray will work just as well on her joints as Enbrel and also help resolve any remaining inflammation in her eyes.  We still have to be vigilant about her exposure to infection and illness and pray that she remains able to fight any illness she comes into contact with.  We are still administering all of her medications and pray for continued improvement.  We are getting ready now for a new part of her journey with foot/ankle braces and pray for quick, easy adjustment and strength.

I am confident that with our faith and help from God, we will continue to move in a positive direction.  I truly believe that when the speed bumps occur in our journey (and I know they will), that God will be by our sides giving us peace and strength to continue the fight against this awful, painful disease.

“Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and he who seeks finds, and to him who knocks it will be opened.”  ~Matthew 7:7-8