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Journal

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May
5
2021

A God hug of a blessing ...

You know we all have our days ... we have our challenges and our own sufferings.  So, I think when there is a bit of sunshine, you just have to share it!

Today, I spoke to a new social worker with the U of M children's hospital.  Her email made it seem like she needed to ask me a thousand questions per child.  They have accommodated us before with a one or two hotel room stay since we have so many appointments.  I was attempting to set this up again for July, when I was directed to a new person with whom I needed to speak.

If you have any experience with medical issues, you know what stress can be caused by throwing one thing out of order - especially when you're juggling so many things at once!

She did pepper me with questions, but in the end was kind and helpful.  She also sent me an email within the hour after our phone call confirming the hotel accommodations for this summer and making sure we were at the hotel with the pool (at the boys' request).  

It's just nice when something works out well and in a timely manner.  You just feel cared for - like a God hug in the middle of a hectic day,

Just wanted to share that hug with all of you! ❤️  

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March
23
2021

my reality ...

I've been putting this update off for five days now ... processing medical information can be emotionally exhausting.   As any mother of chronically ill children can understand, somedays it's just too much to take in.  In the morning, I have to set out 3 prefilled syringes to be emptied into a 3ml syringe and remind the 14 yo to take the injection.  I also have to be sure the 10yo takes his zyrtec and does his inhalers.  Sometimes the 7yo needs an extra injection depending on his pain or fever in the morning.  The 10yo needs to use gauze and cream on his sores before each meal.  The day continues with mother in constant surveillance of reactions and emotions.  When rare disease kiddos are struggling, emotions can run high.  (Non-rare disease kiddos also feel reactive and jealous of the attention at times, which exacerbates the emotions all around.)  In the evening, another round of inhaler treatments for 10yo and I have to fill three syringes for all of three of them - one is filled with three prefilled syringes for 7yo and two are filled with two prefilled for 10 and 14yos.  And then I have to inject the 7yo and the 10 yo (the 14yo injects his own, but must be reminded - several times - until it is done.)

This is all while keeping the daily schedule in tact for all the children (children thrive on set schedules).  Prayer times in the morning and breakfast at 7.  School starts at 8am with us gathering around the table for prayers to begin our school day (we pray three prayers in Latin, Pater Noster, Ave Maria, and Gloria, the spiritual adoption prayer for babies in danger of abortion and the Ante Studium prayer by St. Thomas Aquinas, but we say that in English).  I help the 5yo with his reading and math, and then cycle through the 7 and 10 yos making sure they completed their subjects and correct their sentence analyzing.  The 12 and 14 yos often break in with Pre-Algebra and Algebra questions as well as Latin questions.  We have Morning Time Symposium at 10:30 ish and we are currently doing the Art of Poetry.  Just when I am feeling a little overwhelmed there is piano practice going on and baby fussing and I realize the 3yo has escaped and was trying to visit the neighbors.  We have lunch at noon and have a slight respite.  The older boys continue with some studies in the afternoon and the younger ones go outside - THANK YOU, JESUS, for SPRING!  I have some time to work on the nonprofit we founded and then it's time to make dinner.  There are scraped knees, and bruised emotions and other sick children, who all need mama's attention.  Tonight, the 5yo was sick...  After dinner, there are evening chores, evening medicines, teeth brushing and family prayer.  Then bedtime routine, which can take - well, however long it takes.

I share this not to complain, because I love our family!  Children are a wonderful blessing - and each one of them have their own personality and bring a beautiful light to our family and this world!  But I share it, to show why adding a change to medication or being told I wasn't doing enough to care for my rare disease kiddos, can have a shattering feeling for me emotionally.  It's like I have this carefully stacked creation and it is well-balanced and going smoothly, but it takes an enormous amount of effort.  And when someone changes life on me or blindsides me with "you have to change this" - it's as if they are pulling out pieces of my 3D puzzle at the bottom and the whole thing begins teetering.  

So, you can understand why I put off addressing it and just try to keep things afloat.  But alas, the time has come, so here goes.  To be honest, I don't have the energy to go through the whole day and give you the gentle stories and happy interactions.  We tried to stay positive and the boys watched uplifting films all the way there and back - so that was good for the soul.  Long story short: each child had some startling revelation and it felt personal to me as their mother.

Louis has been on the daily kineret injections (twice daily, once in the morning [3 syringes worth] and once at night[2 syringes worth]) for a couple weeks.  When they did the typical depression screening questions, and it came to the question of whether he ever thought he would be better off dead, he said "not since switching back to kineret."  What?!  I nearly fainted.  I tried to calmly, without much reaction inquire what he meant.  He said that he always kind of hurt all over, even when it wasn't an extreme pain and it just seemed like heaven would be a nicer place, because there is no pain there.  Then he said, "but the kineret shots give a relief that the ilaris never quite did, and that's great.  I feel a LOT better!"  The Ilaris is the medication that is longer lasting (and so it can be taken just once every couple weeks), but we found out last visit that it is not as good at crossing the blood-brain barrier as kineret is.  Louis' symptoms always began in the cranium, which is why we switched back.  I am heart-broken to realize he has been in such continual pain, but unable to articulate it and even thought of death, well heaven, as a relief ... at the same time, I am relieved to know he is finding relief after having switched to kineret.  Please - PLEASE - continue to pray for his heart and his perseverance!   Even when he explained it, it wasn't coming from a hateful place of "why is life so hard?" but more from a "I'd love to be in heaven with Jesus and pain free".  He has such a beautiful heart, and my prayer is that God continues to call Him closer into His heart  - but not to heaven yet!!!

Damian is doing okay, but they will increase his dosing, because he is still in pain.  His weight was up and the doctor said it was a concern and he overheard that.  I could see on his face that his little heart sank and he didn't say another word to her (or me) the entire time she was in there.  The reality is he eats the same as his brothers, but every kid's body processes food differently.  I refuse to single him out and make it an "issue" (I know what that can do to a person's psyche much too personally!), but will encourage activity and healthy eating.  To be honest, our snacks consist mostly of fresh fruit, granola bars and nuts and dried fruits.  Our children drink water mostly and milk and occasionally juice.  (We don't even have soda in the house except for mama's diet coke!)  Dr. C mentioned  lowering carbohydrates and that's where my head started to spin.  How do you feed an army of boys without carbs?  I mean that's the cheapest and easiest way to fill these rascals - potatoes or pasta with meat and veggies.  We don't eat out and we hardly use frozen meals (except frozen pizzas on occasion).  I bake and cook all their meals (the older boys help, too).  So, this started to spin my head and I wondered how I was going to reinvent our meals from a different angle and how would we ever afford that?!  Whatever we do for one we will do for all ... I just don't know what that is yet.  So far, we've given incentive for playing wii by running a mile on the treadmill.  Damian has been running a mile everyday (& then he showers - of his own will! That's huge for a 7yo!), and he gets 20 min of play time.  Normally, they can only play wii on Friday afternoons, but I figure if they run a mile to do it, why not?  Anyway, I'm still not even sure what more I can cut or change at this point.  Our snacks and meals are already healthy.  As I explained it to Dr C, she agreed.  So, she had his thyroid tested.  But the results came back already and it's within normal range.  We'll just keep an eye on it and on his little heart - and pray God presents the best solution in time.

Emmanuel's dosing will increase as well, because he still has flares.  The hardest part was the pulmonologist who chastised me a little for not forcing him to continue his daily zyrtec.  (Sometimes, it is hard to keep everything on track!)  I felt badly, but tried to forgive myself.  His breathing test score was good, but a little worse than last time.  She changed his medication and he will have a combo inhaler now to take morning and night, as well as his rescue inhaler to take before strenuous activity or in case of an attack.  This happened just yesterday!  And did mama remember to bring his inhaler?  No, no she did not.  Bad, bad mama.  And it was his BIRTHDAY of all days!!!  He was jumping on the bouncy castle and then I saw him sitting alone in a chair when the brothers went outside.  What's wrong?  "I can't breathe, because I have stupid asthma and I didn't bring the inhaler."  Poor darling was beginning to cry.  I mentioned it to one of the other mamas present and thanks be to God! - she had an extra albuterol inhaler that had never been used in her suv!   (Jen, I owe you one BIG TIME.)  He took some puffs and within ten minutes or so was back at it.  Dear, sweet, newly-ten-year-old Emmanuel found his mojo once more!  

"So, how did it go?"  I have been asked several times since Thursday and I DO appreciate people remembering and caring about our darlings.  (Thank you ALL so much for your continual concern, love and support!)  I just was thrown off balance and had to get my footing again.  I almost didn't even write this tonight, because today we found out the Dr had sent the wrong Rx to the pharmacy (we need 3ml syringes not 1ml).  I know I would have anarchy on my hands if I told them the had to get more than one injection, because we don't have the syringes large enough to combine them into!  We only have one more day's worth and I pray they straighten it out by tomorrow - or God give me grace to finesse against mutiny!   And what's more, Emmanuel needs a stronger medicine for his mouth sores.  But this stronger med requires extra blood testing.  However, it would just be once between now and our next specialty appointment in early July.  But the Dr sent word through the nurse that the lab didn't do the test they requested in this last pull and they realized they need an immediate one week post beginning the meds blood draw.  That would be three extra blood draws this month for Emmanuel.  As I debated it in my head, I realized that as much as I am trying to keep everything afloat emotionally and physically, so are they!  I mentioned it all to Emmanuel and he said, "the sores hurt, but I don't want to go through all that just now.  Let's just wait until the next appointment."  

Well, that's how things went - rather, how do you say it? "Meh."  We continue onward and we will rise to meet these challenges as well.  Chin up and charge the mountain!  Whatever they say can't be done, we do.  It just may take us a few days to readjust to yet another new normal.

I believe with all my heart that God has all my children in His wonderful and merciful hands.  Even in my frequent failings. God knows best how to care for them and how to get me to step up my game and "level up: to be ready for the next challenge!  We put all our hopes, cares, worries, struggles, and frailties at the foot of Jesus' cross.  Where shall we turn, Lord, you have the words of everlasting life?

St. John Paul II, pray for us!

 

 

 

March
18
2021

Big day of appointments!

Please pray for us today as we make our way back to Mpls for another full day of appointments!

thank you!

st John Paul II, pray for us!

ps - just thought I’d share Damian’s AMAZING joy after his First Confession!

February
28
2021

Happy Rare Disease Day!

Hello friends!

Today we celebrate Rare Disease Day!

This is a day to spread awareness of what it’s like to have a disease no one really knows anything about.  It can be isolating, frustrating, and lonely.

Especially when the disease is lifelong and causes such pain - and the only way to lessen the pain is to take injections, which is also painful.

It’s difficult for anyone to cope with especially children.

So, today we celebrate these three AMAZING kids!  They look fear in the eye every night and choose to do the injection anyway.  They overcome emotional struggles on a daily basis and find a resiliency that is nothing short of heroic!

They are beautiful souls that start and end the day with Jesus, and sprinkle in mischievousness, laughter, schoolwork, practical jokes, hugs, snowball fights, chores, music, and more laughter all throughout the day.

Celebrate Louis, Emmanuel & Damian with us today!

Thank you for your support and prayers! We love you!

St. John Paul II, pray for us!

December
16
2020

Truth bombs & grace ... just breathe

Today was covered in grace.  It was a good thing too because although it was short, sweet would not be the next adjective.

Our purpose, as any parent’s would be, is to help our children have the opportunity to live at their full health potential.  Something gets them sick, you seek to get them well.  You don’t seek to get them so-so, unless that’s the best possible available, but you seek to clear away illness so that they can feel healthy again.

Barring a miracle, our boys will never be disease free.  Yet, we do our best with the information available and with the counsel of the good Dr C.

Today we got new information about the medication we’ve been giving the boys.  Had we known this three years ago we might never had switched, but you can’t look back.  We can only move forward.  We made decisions based on the best information we had at the time.

Background on meds: there are 2 types of medications the boys have used to fight the symptoms of their genetic disease. Kineret is a daily injection.  Ilaris is a longer lasting medication, Pete takes this every 5 weeks.

Currently, Emmanuel and Louis take ilaris every 2 wks and twice a week take a boost of kineret to help with breakthrough symptoms.

Damian just switched back to kineret full time. So he takes a nightly injection and does not take ilaris.  He was having so many breakthrough symptoms on ilaris that we decided to go with kineret full time.  And Damian has not had a “hulk” moment since!

Dr C was happy to hear Damian was doing so well, and then dropped a huge new fact on us.  She said Damian’s improvement affirms the results from a new study.  From a recent research study, they’ve realized that ilaris has a difficult time penetrating the blood/brain barrier.  (I don’t know if I am technically saying this right.)  So it helps the symptoms affecting the body from the neck down. For example it would help with swelling of joints, hives, rash, liver, etc.  But if a patient has a bulk of CAPS symptoms that are neurologically based, ilaris will not be as effective as kineret in treating the disease.

Now, I was already thinking this direction for Emmanuel because he has been struggling so much.  Dr C thought that was a good idea.  So, we’ll get the paperwork moving to set him up to make the switch in the new year.

She then asked about Louis.  We know - beyond any doubt - that the disease presents neurologically heavily in Louis.  As soon as we mentioned these two facts he began to shutdown and get agitated.  Any medical change is emotionally difficult for someone who has battled the struggle of a lifelong illness.  Especially because he would have to take 2 shots daily.

Since he is 14 now, I realize I can’t force a decision on him.  He has to be in agreement or he won’t do it anyway.  It’s a good growth step for us both, but challenging for a mama that just wants to move quickly to fix things to help my baby feel better!

So for now, we’ll let the idea marinate.  We’ll see how Emmanuel improves and weigh options.  Over some time, Louis might decide it is worth the inconvenience of the injections to feel pain free and happy.

I have to admit, it’s an emotional move for me as well.  I can’t explain the relief I felt when we did not have to worry about nightly injections... but anything for my babies.  As we drove home today and the boys watched a movie in the back seat I had a heart to heart with Jesus.  I reconsecrated my life to be a victim of love, (like St Thérèse).  I am happy to lay my life down again for my children but it is not easy.  So He will have to help me and give me the daily strength I need to love as He loves.  (Spoiler alert: Jesus always gives me the strength ...🥰)

Also, medical stress/tension/anxiety was so thick in the car, mama knew we needed something to break the tension - Nelson Creamery FTW!!

Younger boys got ice cream,

Louis got a giant cookie,

Mama got wine 😉.

 

We are home and ready to unwind and relax.

Thank you for your support and prayers!!!

All for Jesus!

St John Paul II, pray for us!

December
15
2020

Eve of another day of appointments

Hi everyone! Please keep us in prayers as we prepare to head up to Mpls again tomorrow for the boys’ specialty appointments.  I asked about doing it virtually but something about being out of state (since we live in WI) disqualifies us. Oh well - boys are already tense. Prayers please!

October
12
2020

THANK YOU!

I am so happy to report that Damian’s medication is finally on its way here!
Thank you for your prayers! 
Now that the shipment is on its way we will switch him to DAILY injections, which (we hope!) will be GREAT for fighting his disease, but difficult for him emotionally.  (Especially since his brothers will be staying on the longer acting medication. It just didn’t seem to help him as much.)
So, please continue your prayers for his peace and acceptance of our new routine!
Thank you, Jesus, for all our blessing!
St. John Paul II, pray for us!

October
8
2020

please keep praying!

Thank you everyone for the continued prayers! The final Rx has still not yet been approved. 😣 
Their Dr did send a ‘life or death’ notice to the Insurance stating that Damian would need hospitalization if he did not receive his medication.  The patient advocate demanded the insurance company expedite the process because of this, they did not guarantee that yet.
She did promise if they keep dragging their feet, the pharmacy will help us get free medication to bridge the gap until the approval, but they ant move on that yet. Sigh.
So, hopeful news but not resolved yet.  Please keep up your prayers!
St. John Paul II, pray for us!