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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!

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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!

October
6
2020

we need prayers

Folks, we need your prayers. Insurance is dragging their feet again on covering the boys’ meds.  Y’all know how expensive these meds are ($12,000 monthly!) no way we could pay out of pocket. And you know the living hell their lives would be without the medication (cranial pressure so bad it causing nighttime vomiting, high fevers, joint pains that is so intense it inhibits walking, hives, swelling, and basically living in a painful state laying on the couch - like having the worst flu of your life).
Please pray insurance figures out what they need to I order to approve the prior authorizations and get our boys their meds!
Thank you!
Jesus, we need you!
Jesus, we trust in you!

September
25
2020

At Least Life’s not Boring 😝

I could tell that today was going to be challenging. Often as the boys find their internal ways of coping with all this, I will see fractures starting in their coping shields.  This morning Louis was more short-tempered & edgy.  Damian and Emmanuel too were acting so happy and then something would happen and I could see they were close to that breaking point.  From who pushed the elevator button to who swiped the card to open the hotel room door, everyone was teetering on the edge of a breakdown.  So you have to be careful in corrections and redirects in order to keep them stable.
     We were able to enjoy breakfast at the hotel (which was just pre-wrapped items like egg McMuffins and cereal, but enough to keep kids happy).  There was actually seating available this time, which was nice.  The pandemic has changed everything.
     We packed the van and drove over to the hospital.  This morning seemed even less secure than just yesterday upon entry, but I’m not complaining!
     We went to see Dr C and the boys were doing pretty well.  We have to change medicine regimen for Damian especially (back to daily injections of kineret), but we’ll make this change slowly.  Please pray he accepts this, because Dr C and I both think he’ll do better with this approach.  We’ll do a trial run for a month and then touch base again with her.
     The LPs and MRIs results were all good as regards the CAPS/NOMID inflammatory reaction.  However they did see a pineal cyst on the brain of Damian.  This happens benignly in 5% of the population.  So, as long as he isn’t having sleep issues (which Damian isn’t), we will just monitor it to make sure it doesn’t grow in size.  Dr C will consult a neurologist and let us know a plan of action for monitoring that.
     They didn’t have to do labs, but they got the flu shot. For Damian and Louis this wasn’t a problem, but for Emmanuel it put him over the edge.  It hurt and he became very withdrawn.  Before we left rheumatology he had cried.  We went over to audiology and he was still gripping his arm.
     Dr M in audiology was super quick and did a fantastic job getting the boys in and out (so grateful for her!). 
     Damian went first and did just fine.  His hearing is good.   While he was in, Emmanuel was weeping (his coping shield had crumbled - he just couldn’t take any more).  When Damian was done, he went out to the waiting room with Nana and baby Charlie (so grateful Nana was with us!).
    Emmanuel was next and halfway through he started crying again and Dr M had to stop the exam and we got him Kleenex and she promised it would only be 6 more minutes.  He finally composed himself enough to complete the exam.   His hearing is fine.  But when I asked if he wanted to go to the waiting room or stay while Louis had his test he said “I just want to stay with you, mom.” ❤️  He was obviously fragile at this point and just needed extra comfort.  So as Louis was getting tested, he timed it and made jokes and I tried to help him beyond his breakdown mode.  But his arm still hurt so it was hard for him to see past it.
    Louis did an amazing job on the exam.  His inner ear still showed a lower level of receptors for high pitch sounds and his hearing reflected that (although at this point it is still barely within normal range, he is at the edge of losing that hearing).  We’ll keep an eye on it and hopefully catch it before it leaves permanent damage.
     After the audiology exam, we were done and celebrated by walking over to Davanni’s pizza.  The boys began to be silly and crazy, but basically they were letting off stress of the last two days.  I tried to at least keep them quiet in their silliness since we were not the only ones eating there, but I knew they needed that release.
    We dropped Nana back at the hotel then and headed home.  Even this evening as I helped Damian take his bandaids off, he wept.  It takes a toll on all of their emotions!!
   But we are back home now and as I write this all are sleeping soundly - they need it!  I should get to bed too, because my sleep last night was awful.
    A HUGE thank you to Nana (my mother) for her help - we could NOT have gottten through these two days without her!
   So, we adjust meds, keep continual watch on certain things - but overall, good results for everyone!  Here’s hoping their daily life continues to improve!
   Thank you for your prayers and love!
St John Paul II, pray for us!!

September
24
2020

well, glad that’s over

So, thank you so much for your prayers earlier this week.  We got the paperwork all done and covid results came in time and all the crazy roadblocks were removed (even then changing our hotel and nana having to change hers!).
We arrived last night and boys got to swim and be spoiled by Nana. ❤️
This morning was the big events of this trip and we were so grateful to the staff at UofM to accommodate us so well.  They gave us a large room to be the home base where my mother could stay with baby Charlie and whoever wasn’t in procedure.  This freed me to be able to stay with whoever was going through a procedure and needed his mama. ❤️
Damian was first and was very anxious. He shut down and wouldn’t speak to anyone.  I knew he was scared and didn’t want to go first.  So they gave him some liquid medicine first to help him calm down. It worked.  Poor baby was NOT going to let anyone touch him and then relaxed and let them place the IV.  They had to try three different places because his veins wouldn’t cooperate.  But he was so happy on his meds & playing on the family life counselor’s iPads that he didn’t notice.  Which was just fine with me!  Before he went full under he said “this bed is so comfy! Thanks for a comfy bed! Soooooo comfy!” Such a cutie 🥰
Emmanuel went back next and did the MRI with movie goggles.  He was confident and happy all day - so thankful he had it easy.
I would’ve been lost without my mom - the boys’ “Nana” - she held Charlie and freed me to run back and forth between the other kiddos.  She also made a coffee run - she made it possible for me to be there for the ones who needed me most! ❤️
Louis has to get prepped next and was keeping his cool extremely well (but I could see the anxiety bubbling right under the surface).  They wheeled him over to MRI and offered him th movie goggles and to wait to go under for just the LP (lumbar puncture - aka spinal tap). He said yes and chose endgame while they did the MRI.
Then I was waiting for Damian to wake up (he took a long time!!).  His MRI & LP went well, but because of the extra meds he needed to calm his anxiety, he had more to sleep off.  
Then I was flagged down by the nurse who said “Louis is waiting for you before he goes under.” ❤️
So, even as mature as he was (and all the nurses commented on how sweet and mature he was! So thoughtful and loving), he still wanted his mama before they put him to sleep.  That melted my heart.  He squeezed my hand so tightly when he was getting ready.  After he fell asleep and they said “we’ll take good care of him” at least three times (they were so sweet - probably sensed Louis’ and my anxiety), I walked out of the room and cried for the first time today.
Then Damian finally woke up, but not really.  He was still seeing things that weren’t there and wasn’t able to walk.  He started crying as I held him.  He said his tummy hurt and he wanted to go to the bathroom but couldn’t walk. The nurse and I took him on the wheelchair and she held the door and I pushed him in. Before we even knew what he was doing, he jumped up and immediately fell down!!!  I was just so grateful his head didn’t hit anything!!
I jumped in and grabbed him up and had to hold him up while he went .., then we pushed him back to the room and he was still seeing things and speaking nonsense.
Louis was brought back and had a long time waking up himself, but eventually he did.  He cried as well.  Then he got angry.  He didn’t want to be here and had to leave NOW.  He fussed at me (he never does that!).  The nurse said this was normal.  Dr warned he may be this way because his bp dropped while doing the LP and they gave him meds to get it back up again.
Damian still couldn’t walk even when they were checking us out - had to be wheeled out and I had to carry him into the hotel.  (Yes, my back hurts - but happy to care for my boys.)
And he was still hallucinating - so that was fun.
Anyway, it’s evening now and all the boys are more calm and almost back to normal.  A wonderful friend brought us dinner and Nana hung out with the kids so mama could get them some fun LEGO sets at the store.
Drs said they had to stay peaceful and not have any active activities today - also it was good they got in the pool yesterday because they can’t get their LP incisions wet for a day.
So instead of JUST watching tc all afternoon - they did LEGO sets too.  Which made their hearts happy, which in turn made their mama happy.
So, phew! That’s done!  
We meet with their specialist tomorrow as well as labs and audiology.
Thanks in advance for the prayers!  I’m emotional spent to say the least.  But happy my boys are more themselves now as we settle down for the night.
St. John Paul II, pray for us!



September
21
2020

so we need your prayers even sooner

Seriously - y’all gotta pray.  
After writing the first update this morning, I found out that the hospital shuttles are no longer running because of COVID, nor can they do valet (COVID), so after 6 different phone calls we got permission to park in the blue lot (we have a monster truck aka ford transit).  Then after 30+ minutes answering screening questions, the nurse asks me when we did their pre-op dr eval.  What now?  No one said this was required.  So, now we get to go in to the pediatrician this afternoon (thank GOD she had openings!), and the nurse just called saying to come early “because there’s a lot of paperwork”... seriously?! After filling out 18 separate e-check in forms (every appt for each kid has a separate one), that’s just EXACTLY what I want to do right now! God, help me.
Oh yeah, and pray their covid test results come back in time or the whole thing gets cancelled.  (No, there’s not a chance they have it - just standard procedure.) 
#silentscreams
#atleastitstimeoffpurgatoryright?

September
21
2020

Tomorrow the Adventure Begins ... Again

Tomorrow afternoon we head up to Mpls to spend the night at the hotel in order to be at the early check-in for the boys’ procedures.  Wednesday will be a long day for sure - any prayers you can spare would be appreciated!
    Louis is feeling the build up of anxiety (as is his mama), but he is opening up to me about it, which is a first!  He was so good last week working ahead on school work so he wouldn’t have to worry about that while we were gone.  We are very proud of him!  Opening up and speaking with me about it is HUGE.  Maybe (just maybe!) we will avoid the “emotional paralysis” this time around.
    Emmanuel and Damian are kind of out of their minds excited already, because they get to see Nana (my mother) who is flying up just to help us for these appointments.  (Thank you, Nana! & Granddad and Stephen! For sharing Nana for a few days!!). 
    Emmanuel & Damian cope with their apprehension by being psycho - so that’s always interesting. :-P
    I probably won’t update again until Wednesday evening - so please keep us in prayers!
    Thank you!
St. John Paul II, pray for us!

September
8
2020

First day of school

Well, today went pretty well all things considered!

Damian and Emmanuel have been in speech and OT and were using their “skills” as they worked on their subjects.

Louis did so well concentrating today!  He did keep bringing up the upcoming appointment, which is obviously creating some anxiety.  If you could say a few prayers in advance, we’d be so appreciative!  Sept 23 & 24, both Damian and Louis have to go under in order to do the spinal tap (Lumbar puncture) and MRI, and Emmanuel has the MRI - the audiology and rheumatology the next day ... Louis is in 8th grade, Emmanuel in 4th & Damian in 2nd!

We are happy about the schedule of school resuming - will be happy to get past those appointments to find more peace for our CAPS/NOMID kids!

Thank you for your prayers!