Welcome to Louis’s site. Please sign in to show your support.

Journal

October
14
2014

Growing is good! Novena for healing starting if you'd like to join :-)

So, it was Friday when I took Emmanuel in and we saw our new doctor, Dr M. She is very kind and has two young sons of her own - so wasn't alarmed by the constant movement in the room during the apt. ;-)
I had been having some serious talks with myself lately about little Emmanuel. He seems to get sick more than anyone in our family and I keep having doubts about the meds he's on. Louis and Damian have severe cases of CAPS/NOMID, and it is clear they need the medication. But Emmanuel's case seems more mild and so I've had some "mommy guilt" about maybe he doesn't need the medicine and maybe I'm putting him more at risk for other diseases by having him on the medicine. 
He has had pneumonia twice in the last two months. And the most recent case put him in the hospital for 2 and half days. That was a wee bit scary. So, I went into the apt on Friday ready to discuss this. Dr M knew all about the hospitalization (because they sent us to Mayo so he could be closer to her care ... yes, that meant a trip via ambulance from Winona to Rochester ... not one of my favorite moments).  She had ideas of her own ready to share! 
She first looked through his charts and said "is this for real?" She was commenting on his height. The thing was that Emmanuel was rather short (barely on the chart) and that's why we decided to put him on a small dose to see if it could help. She said, "are these two measurements accurate? This looks like a mistake." He was first seen in February I think and then put on the medication after that. The first measurement and then the follow up in May were the same - both less than 5% on the growth chart. On Friday, he had grown 5 cm! He was measuring between the 10 and 25% on the chart!
No mistake. The medicine IS helping him and that was very reassuring for this mama. His dose is small, but obviously what he needs. So, no more second guessing! What great news to hear - grow, Emmanuel, grow!
She did offer another suggestion about the pneumonia; she thought there could be something else going on here like a biological anomaly. If one of his airways is small then he'd be more prone to pneumonia. She said she would recommend seeing a lung doctor because "something else is going on here" ... then, perhaps because of the look on my face (or maybe my curling into a fetal position, humming loudly with my fingers in my ears, saying, "no no no! nothing else! I'm not listening!" - oh wait, that just happened in my head ...), she said, "well, maybe wait. If it happens again, then you really should take him to a lung specialist because this is not from his medication, something else is going on here."
So that was all. She forgot to order his hearing and eye exams (she's still getting to know this, it is extremely rare she kept telling me, "yeah, I know" I would say...), so we'll have to go back another day for those. 
And that was about it! The meds are helping him grow! (so relieved by this!!!) And we take Louis and Damian on November 12 for their six month check, which will include hearing and eye exams, blood work and their exam with Dr M. Please pray for that!
Also, the GoFundMe site that our dear friend felt called to start for us will be closing on St. John Paul II's feast day October 23 (one day before Louis turns 8!). She began a novena to St. John Paul II today to pray for healing for our boys - please join us! Go here to see her message from today (which includes the novena prayer): http://www.gofundme.com/6bg0i0  

Help Louis Stay Connected to Family and Friends

A $30 donation to CaringBridge powers a site like Louis's for one month. Will you make a gift to ensure that this site stays online for them and for you?

Comments