Louis Martin's Journal
And Actually the Journey is Just Beginning … Again
Written Nov 19, 2013 11:34pm
As I sit down to write this, I don’t know whether it will be short and factual or reflective – I just don’t know what I have left in me today. So let me start by thanking people – thanks to every one for praying, a big thank you to the Grupe family especially Brenda and Marissa for the healthy meal for tonight(it meant so much to come home after today and not have to think about cooking!)and to my parents and siblings who call and text me with such love – I know I wasn’t able to get back to each of you, but please know how much I love and appreciate you and Pete’s family, I know you have been praying for us … thank you all!
We started out early, and Louis promised to be good as we hustled down the parking lot elevator across the subway level and through the building towards the Mayo Clinic elevators. The place looked more friendly today, huge banners with smiling faces hung against the sterile white walls of the atrium and an older gentlemen played a familiar love song on the piano as we hurried by. I knew even then that I was more at peace because so many of you were praying for us.
Louis was better than his word. Not only did he respond to the questions asked to him, but every time people were checking out Damian, he was right there guarding him and helping make him smile. The overall feel of the day was good – my concerns were recognized and not dismissed, and everyone was very attentive and kind. (Maybe I looked like I was about to lose it! Or maybe they just knew this was tough news…)
So, to cut to the chase – there were three kinds of news: some I expected to hear, some I wanted to hear and some I never expected and wished I hadn’t heard. First: we expected Damian would officially receive the same diagnosis as Louis (NOMID), which he did. We also expected that he would have to start receiving daily shots as well, he does. (He got his first one tonight!What a sweet baby!) We also expected that he and Louis would need hearing and eye exams – all were scheduled for both of them. There were extra things like how vaccines will have to be postponed for Damian and at some point we’ll have to take him off the Meds to get the vaccines and wait 6 weeks before starting the meds again – but that’s a discussion for another time. And Louis needs a dose increase. All things we anticipated – not that we like it, but at least I was prepared for it.
Second, what we hoped for: as it turns out, last week we found out that some family members on Pete’s side actually have the same mutation! We maybe able to figure out more about it while learning better how to deal with it.We hoped that Dr R would suggest that all the boys be tested for the mutation as well as Pete and myself, which she did. Even knowing about Pete’s relatives,she thought it’d be a good idea anyway- I didn’t even have to convince her! We also hoped that knowing all this, she might help us get into an NIH study,which she and her staff began working on right away. They were so very helpful! Not sure what we will find in whom with the tests, but this is the next step in the puzzle. It’s a genetic mutation andit can be passed down even if only one parent has it. But it’s a 50-50 chancewith every child as to whether they’ll have it or not. Also, how the mutation presents itself ineach individual varies. So, one day at atime. We’ll cross that bridge when the results come back…
What I didn’t want to hear … two things were not expected. First, that she was concerned about Louis’ bones in his leg – worried about bone inflammation because it hurt him. We had to get x-rays and will get the testresults back within the week. The last thing is the hardest. Dr R thinks Damian may be experiencing little seizures. She took me aside and spoke quietly soLouis wouldn’t hear, “I know this is the last thing you want to hear right now,but you need to watch for it.” She was so sweet not to alarm Louis, and explained the spastic clasping of his own hands that Damian does sometimes could be a sign of a slight seizure, not one where they pass out, but just enough to be out of it for a minute. She said she didn’t see him staring into space today but just to be aware of it. I’ve been watching him since we’ve been home and it seems like he’s just playing… and then he did the hand thing and his eyes were still pointed my direction but looking passed me, fixed and shaking slightly.Then it passed. That was the only time, he hasn’t done that since, but ofcourse we will be watching and reporting back to Dr R. That was not expected and definitely a gut-punch for me emotionally. On top of everything else …
I understand what we need to do, but I’ll admit it was quite a day and I am a little numb from it all. My heart is so exhausted-broken and yet alert to our babies’ needs. So, I think I just need to close it here with no beautiful words, just a gratitude for your prayers and to ask you to please keep praying.
God bless you all
We are eternallygrateful to you for your prayers and support…thank you so very much… love andmany blessings, the Martins
O Blessed Trinity, we thank You for having graced the Church with Pope John Paul II and for allowing the tenderness of Your Fatherly care, the glory of the cross of Christ, and the splendor of the Holy Spirit, to Shine through him.
Trusting fully in Your infinite mercy and in the maternal intercession of Mary, he has given us a living image of Jesus the Good Shepherd, and has shown us that holiness is the necessary measure of ordinary Christian life and is the way of achieving eternal communion with You.
Grant us, by his intercession, and according to Your will, the graces we implore...
that Louis & Damian be completely restored to health!
hoping that he will soon be numbered among Your Saints. Amen.
The Big Day!
Written Nov 18, 2013 8:40pmTomorrow morning Louis, Damian & I head out early to go to their appointments at Mayo.
Please pray for us! I hope we will get some dots connected to figuring this out & at least a Medication plan of action for Damian...
We are in God's hands!
God is good, all the time...
Written Nov 1, 2013 3:49pmI need to remember that - God IS good-even when we don't understand why He lets certain things happen.
I don't really have the words to say right now, but I know we'll need the prayers - so I'll just give you the facts.
Our youngest (almost 5 months old now) Damian has shown signs of the same type of rare disease Louis has (NOMID) from a day after he was born. We thought it just be a fluke. Then at 2 1/2 months he started showing more signs. So I asked Louis' doctor about it and they thought he should be tested.
The test results came back this week.
Damian does indeed have the same extremely rare disease as Louis has. What does this mean? What does it mean for his brothers? For our family? Daily shots for my baby?!
So many questions racing through my mind and I have no answers to offer.
We will go to the doctor on Nov 19th (if not before). Louis & Damian have appointments back to back.
Hopefully we will have some answers and at least know how we will proceed.
I am just coasting until then. If I think about it, I start tearing up. It feels like an avalanche ... the worst & most unlikely outcome - coming true ... Please pray for Damian, Louis and our family. Thank you so much!