About the scary mommy article…
Many of you are here now because of it, so welcome! Here’s a quick background on when that was written and what has happened since that time.
In late October, Landon was very ill with pneumonia believed to be caused by aspiration during a seizure. After two or three days in the hospital with aggressive treatments and a lot of breathing support and respiratory treatments, he was incredibly weak and still getting worse day by day. He received a blood transfusion, and J (my husband) had a DR encourage him to think about how far we will go with support and treatments for Landon, given how sick he is even when he’s “healthy”. Things were very bad. I tried to remain somewhat encouraged on here, but in the meantime, I had conversations with my husband and my parents about how we weren’t sure if Landon was going to pull out of it this time, and it was between Landon and God at this point. I wrote most of that article through tears after one of those conversations. (I added the “and winning” line the very next day when it finally seemed Landon’s digression slowed…indicating he might be ready to turn a corner to improving in a day or two.)
And “win” he did. Landon came out of that battle stronger than ever. Since his discharge in early November, we’ve had these key events:
- Both boys had successful G-tube surgery on December 2nd
- Both boys were weaned off of Topamax starting in Mid December, and placed on Onfi.
- They started receiving excellent hands on care from an in home day time nanny, and receive therapy at home throughout the month. (God bless you, D!)
Each of these things has been a contributing factor, and we’ve observed quite a positive change in both boys in the last month. Improved alert time, more vocalization, more smiles, and slightly better muscle coordination for things like assisted rolling, working on head control, etc. More “life” in their days and moments.
In short, it has been a fantastic month and we can’t stop smiling about it.
We have a lot of ups and downs around here. So if you decide to stick around, prepare for a bit of an emotional roller coaster.
I’ll also throw this out there:
I am not a writer. So excuse the random choppy sentences. I type like I think. And I often think in circles.
I am not a Doctor. So don’t mistake any of my ramblings for advice or reliable medical knowledge. I’m just relaying to you what we experience and learn.
I am not a hero. Quite frankly I’m bad at this fairly often. So if you hope that in reading here you’ll find some inspiring approach to life, you’ll be disappointed.
I am a mom.
I am doing what you would do if you were me. And if you ever find yourself in a similar situation, YOU CAN DO IT TOO.
I am loving my kids and taking it one day, one prayer, one moment at a time.
Mama Laughs 
I just want to say that even though you think aren’t a hero, you are. Especially to your sweet boys. I have 8 month old twin girls. We’ve been extremely blessed having healthy children. And, for the record, I believe ALL children are blessings and perfect in their own individual ways. You keep strong and making it through day by day. Praying for you and your family!
I’m like Jenny R, you are a super hero, to your boys all 3, and to me as a friend! You are a wonderful mom, daughter, and wife! Keep taking a day at a time, being you! God sees just who you and J are as parents, and he is blessing you each day! Sending prayers to you and your family, keep sending us updates I love receiving them and watching the boys (all 3) as they grow!
So happy things are going better. I’m in it for the long haul – in good times or bad times.
Sent on a Sprint Samsung Galaxy S® 5
My youngest was born without her corpus Callosum, and was diagnosed with a form of Holoprosencephaly. I was not aware of her brain condition until well after her birth, despite having multiple ultrasounds due to my being diabetic. The first thing her pediatrician said was, “at least she’s eating.”
She is four now, and while she doesn’t talk, she communicates in her own way, is able to army crawl herself across the floor, and is able to take steps with a gait trainer. We even have her using a manual wheelchair! Looking at her scans, she is doing so much more than was expected. The brain is a mysterious thing, so don’t let doctor’s approximations sway you. No one but God knows for sure what the outcome for your boys will be!
Praying that they continue to improve!
I just want to thank you. Yesterday before I read your article on scary mommy, I was on my pity pot because my 6 week old baby girl wasn’t doing what I wanted her to do; namely, give me a break, let me take a shower, give me back my nipples for a few minutes, etc. I was feeling quite sorry for myself until I read your article and realized that I needed to find some gratitude. I’m sorry that you and your family are going through this. Thank you for putting things in perspective for me.
I think you are remarkable family! Like Jennifer said, I was having my own little pity party before I read your article on Scary Mommy. I’m a SAHM of 3 who’s husband works 70hrs a week. I sometimes feel like a single parent and I find it overwhelming at times. Then I read your article and felt completely ashamed of myself. I have been blessed with three healthy children and that is all that matters. You make me want to be a better parent. Thank you for sharing your story. I needed a swift kick in the butt! God bless you and your family.
It is good to see the boys up in the chairs playing with big brother. Glad everyone is home and healthy with great helpers during the day. Keep up the good work caring for those boys. They all have the best smiles.