Thursday, March 4, 2021

Our new normal


11 days.  So much has changed in 11 days.  I am going to write about it here so years from now I can look back and see how far we have come.  12 days ago I had no idea.  Blissfully unaware, we were dealing with other problems that were already enough to say- "I can't handle any more right now," and "God, my plate is overflowing with worry, and appointments, and sick kiddos- please take some of it away."  Saturday night, the 20th into the 21st, I could not sleep.  Not unusual, my brain kicks into high gear when I am finally quiet and I over think and over worry about life.  I usually recite Psalm 19:14 - "Let the words of my mouth and the mediation of my heart be acceptable to you, oh Lord, my strength and my redeemer."  But I could not, for the life of me, remember that verse.  The verse I have recited one thousand times.  Instead, Psalm 56:3 is the only verse I could remember - "When I am afraid I will trust in You."  And I remember lying in bed thinking - I am not afraid, why is that verse in my head?!  Sunday morning we served at church - opening doors and greeting people, and then we came home to do virtual church.  I'll never forget - I was doing yoga and Noah told me his mouth felt like I had shoved a bag of cotton balls in it.  We borrowed a glucometer from a neighbor (thanks Lisa!) and 530 showed on the screen.  After packing multiple bags, we headed to Hopkins peds er where he was promptly diagnosed with type 1 diabetes.  Two days filled with needles, and doctors, and carb counting, and dietians, and information overload - all the while I felt like I was going to wake up any minute and it would all have been a very bad dream.

Quick side note here - I called my twin sis Liz when we were packing for the hospital.  Her son Ben was diagnosed one year and two days before noah with T1D.  And we would not be were we are today without her.  By the time we made it to the hospital, she had virtually ordered all of Amazon and sent it to my house.  Things I would never have been able to find, things I didn't know we needed.  Low carb snacks, peanuts, skinny pop, protein bars, zero gatorade, juice boxes, sharps containers, fruit snacks, glucose tabs, a bacon pan, a kitchen scale, a diabetic organizer, and pages upon pages of foods with weights corresponding to carb content.  She has taken my 100 calls a day without hesitation, and she and Ben have talked Noah through injection site problems, dexcom issues, and carb questions.  I am a hot mess, but without her, I am not sure I would be functioning.

Fast forward 10 days.  Our lives have forever changed.  More specifically, Noah's life has forever changed and we are along for the ride.  We have a new vocabulary and nifty new gadgets sprinkled throughout our house.  There are sharps containers everywhere, and a diabetes snack drawer in our island.  Our refrigerator has papers hanging on it with carb counts, what to do if he drops under 70, or is 70-100, what foods are "free", and what his current insulin ratio and sliding scale are (these change almost daily).  We say words like dexcom, cgm, insulin pump, tresiba, in a language we hadn't used prior to 11 days ago.  Momma bear appeared with the insurance company, spending hours fighting for an item that is standard of care for T1D.  And through it all, Noah has been amazing.  Let's be honest, he has many days when he is not happy, is frustrated and angry, is mourning the loss of the ease of life he once knew, mourning being able to eat absolutely whatever he wanted whenever he wanted without thinking about it.  But he has taken total control of his diabetes and counts all of his own carbs, figures out his insulin requirements, and pokes that needle into his arm, leg, stomach 4 times a day.  We often hear, "That's not worth my carbs":).

So many people have asked how we are doing - here is a glimpse into our daily life. I wake up 45 minutes before the kiddos, and start my day being a short order chef for breakfast.  What used to be a meal filled with cereal and fruit has turned into bacon, eggs, waffles, and fruit for noah, and a combination of that for the rest.  He calculates his carbs for breakfast, injects his insulin and eats.  With his continuous glucose monitor he is able to see if he is high or low during school, prompting either a snack or a quick run around the cul de sac (thanks virtual school:).  Then carb counting for lunch, weighing the blueberries, choosing what carbs he wants and then finding other foods to fill him up.  More needles.  Then sports - the cause of even more gray hairs on my head.  Exercise burns energy resulting in plummeting blood sugar.  So he eats carbs before tennis or swim, and then has to check his blood sugar every 30 minutes during practice (so much easier with the CGM - a flick of his wrist and his current blood sugar pops on the screen).  Then he stops practicing and goes to grab a snack, and then repeats the process every 30 minutes, until he drops too low and has to stop practicing.  Home for supper, carb counting, insulin, trying to figure out how many french fries are in 20 grams of carbs (not enough- that's for sure!).  and throughout the day, he will go high or low for no apparent reason - like last thursday when he almost passed out during his ap calc class with a blood sugar of 72!  and I just have to keep reminding myself to breathe.

We have been so blessed with a village of friends who have loved and supported us with food, and cards, and wine:), and balloons, and flowers, and texts, and calls, and prayers.  And I am breathing, and sometimes eating (the feeling of dread is constant), and hardly sleeping.  And I am trying to be real with people when they ask how we are doing, which throws many people off because they are so used to me saying we are fine!  But we are not.  We are coping and adjusting, we are angry and sad, we are hopeful and thankful.  Thankful that this happened now and not next year when he is 5.5 hours away at college.  Thankful we caught it so early. Thankful for amazing doctors and nurses. Hopeful for new technology.  And through it all, He is faithful.  Not going to lie, I have been very angry with God.  My plate was already full, overflowing, but now I have an elephant standing on my plate.  A large elephant who won't budge.  My kiddos go through so much pain, and I look around at other families who do not struggle with childhood diseases and I try so hard not to covet their lives.  But through my anger, I know He is there.  He is the reason I can breathe, the reason I find things to smile about.  He is behind every hug, every ray of sunshine, every meal brought to us.  I have heard so many times in the last week, "God never gives you more than you can handle".  Not so big on that statement to be honest.  I can't handle any of this.  If you think I can you are wrong.  I know I seem so strong on the outside, but just breathing takes effort most days.  But I will handle it with God carrying me.  I will be the mother my kiddos need because He equips be, not because I am strong.  Isaiah 40:31 is my life verse, and right now I am waiting on Him to renew my strength, to be my strength.  I will run, and I will soar, not because of me, but because of who I am in Him.  Not today, not tomorrow, but soon.

Monday, November 16, 2020

13!!!!








 Happy 13th birthday to our Hannah!!!  Sweet girl, you are our constant sunshine, our Pinterest loving cuddle bug.  You are the bravest, strongest person I know and I want to be just like you when I grow up.  I pray this year bring you so much joy and love and laughter and health!!!!  We are so thankful for you!!  Happy birthday my sunshine ☀️ ❤️❤️



Thursday, June 13, 2019

An Update



Well, I had hoped that I would be updating you all that the new drug worked for Hannah, that her psoriatic and rheumatoid arthritis was in remission or at least getting better, and that she was pain free.  Unfortunately that's not our update.  Hannah has had three injections of Stelara, the new biologic that she was prescribed when we stopped her Enbrel.  It has been over 14 weeks since the first shot, and with this biologic, we should have seen some improvement or at least the stop of the progression of the disease.  Her psoriatic arthritis is continuing to spread, and her rheumatoid arthritis is now flaring, and in new joints - specifically in both of her feet.  She has pain every day, but is trying so hard to stay normal and finish the school year strong!  And every time her rheumatoid arthritis flares, she develops uveitis in her eyes.  We saw the pediatric ophthalmologist last week, and she has developed inflammation in both her eyes.  She is on steroid eyes drops multiple times a day, hopefully keeping the inflammation from causing permanent damage. 
So after a long conference with her rheumatologist on Monday, we decided together to put her on Humira, a drug similar to Enbrel.  She will receive injections every other week, and we are praying with faith that this biologic will halt the progression of all three diseases that she has, and give her relief from the pain.  But, through it all, we have seen God's faithfulness and we are thankful.  Thankful for doctors who take the time to talk, explain, and commiserate with us.  Thankful for an amazing team of nurses at CHOP who call and check on us and truly care how our whole family is coping.  Thankful that after months of fighting with our insurance company for drug approval, when the Humira was prescribed, it was approved in less than 36 hours and will be at our home tomorrow so that Hannah can receive her first injection tomorrow.  Thankful for our daughter's sweet spirit and constant joy - her attitude is always hopeful and she finds the best in every situation.  We covet your prayers - please pray that the Humira works, as we are running out of options for treatment.  Please pray that the new drug works quickly, and that there are not side effects or reactions.  Hannah still has some of the Stelara in her system, as it is an every 12 week drug, and so adding the Humira further suppresses her immune system and leaves her susceptible to infection.  Even a simple cold could cause her to become extremely sick.  Please pray for protection for our girl, and for her to be able to enjoy her summer and get ready to enter middle school!  Thank you for being on this crazy journey with us!



Monday, March 11, 2019

Waiting



I am not a patient person.  At all.  I have always found it ironic that the life verse that I choose years ago speaks about waiting (Isaiah 40:31) - I am positive that God has a sense of humor!  Anyways, I hate waiting.  Over the past few years I have been working on trying to enjoy the journey, and not hurry to the finish.  Now, more than ever, I am struggling in the wait.  Will her new medication work?  How soon?  If it doesn't what next?  Every day I look at her fingers and heels, and nothing has changed.  In fact, her fingers are progressively getting worse.  So we wait.  And I attempt to not be consumed with questions, worry, and anxiety. 



I will trust in You.  We will wait for Your healing.  I will look for the little things that you send each day, reminders that you are in control.  

She woke up this morning and was only a little stiff walking.

She was able to balance on her left foot for 30 seconds yesterday - two years ago she couldn't stand on that foot alone at all.

She played with friends yesterday without needing medicine for pain.

She walked into school with a smile today.

She is home.

Simple reminders.  But they are filled with hope and healing. 

Saturday, March 2, 2019

My heart

This entry is for Hannah, but we would be honored for you all to share in our journey.
Oh my girl - mommy doesn't even know where to begin.  You have been my hero since you were born.  A struggle even before you entered the world, you were our fighter.  Days in the NICU, home on a heart monitor, multiple doctors and unknowns.  Many sleepless nights for mommy - and I now treasure every one.
You are so strong.
Then at 18 months, the unknown again.  Why was your ankle swollen, why were you in so much pain?  Again, multiple doctors and tests.  Juvenile idiopathic arthritis.  How is that even possible at 18 months?  Why God?  Meds, injections, inflammation in your eyes.  Trying to hold you down to put drops in every two hours, trying to keep sunglasses on a two year old every time we went outside. We prayed for healing, for answers, for understanding.  You were our fighter.
You are so strong.
Fall of 2011.  Your arthritis was still there, but most days you were running around playing.  And then you threw up, one random day in September.  Just once.  You know mommy - my little ticking time bombs.  I hate the stomach bug!  But no one else got it.  A few weeks later, you threw up again.  Once. But no one else.  And then again, and a week later again.  Your labs were fine, once in awhile you would complain about your left side hurting.  You started losing weight.  I finally took you to the emergency room right before Christmas.  They told me you had anxiety-related reflux - I know, those preschool days were rough:).  Momma didn't buy it and I refused to leave until they did a scan of your belly.  They did an ultrasound to pacify me (I'm sure they had choice words to say about me demanding they scan you) and I could tell from the ultrasound tech's face that something was wrong.  You had severe hydronephrosis (your left kidney was grossly enlarged), and that was causing the side pain and vomiting.  They sent us immediately down to Maria Fareri Children's Hospital to see Dr. Lori Dyer.  Starting in January, you had 5 surgeries over the next 5 months, to place stents, fix an obstruction, more stents, and finallyto  reconstruct your ureters and bladder.  We spent weeks in the hospital and you never stopped smiling or amazing us with your gorgeous smile and never-ending positive attitude.  I prayed constantly - for God to take this from you and give it to me.  For complete healing.  For just one pain-free day. To steady Dr. Lori's hands as she operated on you for 6 hours. You were only 4.
You are so strong.
Over the next 6 years, we saw doctors constantly.  Rheumatology, urology, ophthalmology.... ultrasounds, mri's labs.  You were started on low-dose chemo for your arthritis.  I injected you with it every Saturday night and you would spend the next 36 hours vomiting.  It was the hardest thing I had ever done - sticking that needle into your stomach knowing I was injecting a toxic chemical into your body that was going to make your hair fall out and cause vomiting for days.  Every week.  You had pain every day, you wore braces on your little ankles to stop them from growing the wrong way.  And yet you were my constant sunshine, always smiling, always thanking me for giving you your injections.  Oh, my heart broke every day. And I dreaded Saturday nights. Why God?  Why?  Give it to me.  I'll gladly take it for her.  I prayed that you would never know that my hand shook while I was drawing up your chemo, that I desperately wanted to run away every Saturday night so I didn't have to make you sick.  I prayed constantly, many days without words, just my heart broken for you and knowing that He knew my longings, my unspoken words.
You are so strong.
April 18, 2015.  You were jumping on the trampoline and I heard a scream I will never forget.  You had shattered your tibia and fibula in over 15 different places.  Surgery. A bright pink cast from hip to toes for 6 weeks.  Wheelchair to couch to wheelchair.  Then a below the knee cast for 6 weeks with crutches.  Then a walking boot for a month.  No swimming in our pool, you had to watch your siblings play and have fun while you sat on the sidelines.  I cried with you, held you when you said "it's not fair, why me again"?  And then you dried you tears and smiled and went on with life.  You amaze me with your strength, physically, emotionally, mentally.  And after all the casts and boots were off, what did you do?  You jumped on the trampoline!
You are so strong.
February 2017. We had found doctors for you at Hopkins, but you were not getting better, in fact your arthritis had spread to both ankles, your back, and possibly your jaw.  We prayed about what to do, and we finally switched to the Children's Hospital of Philadelphia and met Dr. Weaver.  His strong presence instantly calmed us both, and he had you laughing within minutes.  But he told us what I had been dreading - you were getting worse and we needed to switch your meds.  To Enbrel.  Another injection, this one with the possible side effect of lymphoma or leukemia later in life.  Dear God - How do I make that decision?  How can I inject her with that knowing what it might cause?  He calmly explained what could happen if we didn't start it and we knew that he was right, you needed it.  $1200 a week sitting in my fridge door.  I wanted to vomit.  Every friday night you continued to thank me when I gave you your injection.  I wish I could say it got easier for me - I give hundreds of shots a year at work and don't even think about it.  But my sweet girl, you are my heart, and it shatters every time I draw up your meds.  But it worked.  You started to feel better.  You weren't losing your hair, you didn't throw up at all.  You were able to go to the mall and not sit in your wheelchair the whole time.  The mornings became easier - you could move without horrible pain and you didn't need to sit in a warm bathtub in able to move.  We prayed for complete healing, we thanked God for pain-free days.  We thanked God for every day you weren't in the hospital.
You are so strong.
Summer 2018.  You came to me and said you had a few bumps around your left thumb.  I told you not to pick them:).  And then they spread.  Under your nail, and then the nail fell off.  Countless doctors, meds, pills, creams, ointments. Nothing helped.  And we have no idea whats happening to your joints inside, we can only see the outside.  The whole time my heart cried out to our God - please no.  Not again.  Hasn't she gone through enough?  Give it to me.  Please.  In August we received a new diagnosis, and a medicine that seemed to help.  But then it stopped.  And it spread.  Your fingers and heels look so painful precious one.  Cracked, bleeding.  How do you do it every day?  You get up, snuggle with me, all smiles, ready to take on the day.  I look around and see all the healthy children and I am screaming on the inside - why you?  why more?  please no!  But you are here, not in the hospital.  You are home, constantly positive, my sunshine.  And now we have a new drug, one with the potential to take this away.  $20,000 sitting in my fridge.  But will it?  Only He knows.  But I rest today in the knowledge that He has never left us, none of this is a surprise to Him.  He loves you so much more than I can ever comprehend.  Oh sweet girl, I pray you continue to feel His love and experience His peace.
You are so strong.
You are my singer, and there is nothing that you love more in the morning before school than turning on the speaker and belting out songs with mommy.  Our song has always been "Trust in You" by Lauren Daigle.  Precious one, never forget the words of our song.  Momma loves you.
You are so strong.
Letting go of every single dream
I lay each one down at Your feet
Every moment of my wandering
Never changes what You see
I try to win this war
I confess, my hands are weary, I need Your rest
Mighty warrior, king of the fight
No matter what I face You're by my side
When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through
When You don't give the answers
As I cry out to You
I will trust, I will trust, I will trust in You
Truth is, You know what tomorrow brings
There's not a day ahead You have not seen
So let all things be my life and breath
I want what You want Lord and nothing less
When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through
When You don't give the answers
As I cry out to You
I will trust, I will trust, I will trust in You
I will trust in You
You are my strength and comfort
You are my steady hand
You are my firm foudation
The rock on which I stand
Your ways are always higher
Your plans are always good
There's not a place where I'll go
You've not already stood
When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through
When You don't give the answers
As I cry out to You
I will trust, I will trust, I will trust in You
I will trust in You
I will trust in You
I will trust in You