Post-MRI Update

So I’ve been stalling posting an update because while the doctors gave us a lot of information about Benjamin’s MRI, we don’t feel necessarily wiser for it. Plus, it’s never easy to talk about unhappy stuff.

The short version: There was some bleeding in his brain, in two locations. The bleeds have stopped. They were in the tissue, so are considered damage. While it increases his risk for disabilities down the line, no one knows what exactly this will mean for Ben.

The long version: What we are looking at are two inter-cerebral hemorrhages (ICH). One sort of big one (to us- the doctors called it medium) in his left occipital lobe and one in his cerebellum. No one is sure how they happened. They are pretty atypical in location and due to his age and probably happened around two weeks ago. So far they have not affected Ben outwardly – his reflexes look good, he reacts normally, he isn’t acting any differently. The damage in the cerebellum is more concerning to the doctors due to statistically outcomes for babies with bleeds there, and the more central role it plays in motor skills and balance. The occipital lobe is key in processing vision. We just won’t know what sort of effect this will have on him until he is further along in his development – like when he tries to learn to crawl, walk, speak, read. The range of possibilities is pretty wide, everywhere from no effect to serious disabilities. Luckily babies brains are pretty amazing and undamaged parts sometimes take over functions for damaged parts and recover in ways doctors don’t even understand. Ben will be getting all the same early intervention and therapies he would be getting anyway due to his early birth – so no change there.

And really – this is not a big change for us either. We knew since January Ben would possibly face serious challenges. The risk is a bit higher now, but we will remain hopeful as always. Like I keep saying – the doctors said Ben would probably not make it to viability, then doctors said Ben might not make it past the first few days – heck, five years ago the doctors told us Amy had a 50% chance herself… We’ll just keep proving them wrong. (Well – actually Amy and Ben will – I just hang around and try to get some of the glory).

For us – Benjamin is perfect and we will love him no matter what.

Cayman also makes this exact face

Advertisements

19 thoughts on “Post-MRI Update

  1. I think Ben will surprise everyone when time comes, preemies are VERY smart babies my nieces were born at 7 months (youngest female) the other at 8 months not as young as Ben BUT as you yourself said Ben has proven to doctors that he beat the odds that they predicted him and though I may not really you & Amy as well as most ppl do I TOO believe that he will be as strong as her and victorious! And Early Intervention is WONDERFUL! I know why I say that so I know it will DEFINTELY help Ben as he grows. AND if he turns out differently as you said again he is and will ALWAYS be Perfect to his parents who love him very dearly; to me no matter what outcome he is ALREADY a special boy who can make anyone fall in love with him just by seeing his pics even with those tubes he is so precious looking! You & Amy keep doing the wonderful job that you both are doing because I TRULY believe Ben as small as he is FEELS it and knows that as much as he is precious to everyone especially his folks his parents are just as precious to him AND I REALLY think that is what makes Ben so Strong! Kepp at it Ben! You’re doing AWESOME!! : ) Just seeing your pics that your proud parents put makes me love you!

  2. All our love to the three of you. Ben is perfect in our eyes. God doesn’t make mistakes. Ben was sent to you for a purpose. You are still all in our prayers and hearts. Keep looking up miracles never stop.

  3. It is never easy to hear challenging news…. especially about ones child. It must be especially hard to have news like this which means….. well who knows what. Maybe nothing, maybe something…. keep up the good work, and continue to feel the waves of support around you…

  4. I continue to hope and pray for Benjamin but wanted to share a poem with you that has helped me… (this is NOT to say that any long term effects will be there for Ben!) Here is the shortened version: Welcome To Holland by: Emily Perl Kingsley

    I am often asked to describe the experience of raising a child with a disability – to try to help people imagine how it would feel. It’s like this……When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. You may learn some handy phrases in Italian. After months of anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess says, “Welcome to Holland. “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan.

    The important thing is that they haven’t taken you to a horrible, disgusting, place. It’s just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”And the pain of that will never go away… because the loss of that dream is a very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

    • Thank you so much for your lovely support Jamie. We’ve really, really appreciated it. I’ve seen that story before, and it is very well done, and something good to remember. Thank you so much for sharing. I hope you all are well and hopefully we can see you soon!

  5. What is not to love?

  6. You and Amy and Ben are absolutely amazing. Some of the biggest challenges turn out to be the greatest blessings. Love and prayers for all of you and may you continue to prove the doctors wrong!

  7. I’m down with the “miracle baby” on this one. He has beaten all the odds to this point. I don’t see him stopping him now!!

  8. This certainly isn’t the news you wanted, but Ben has proven them wrong before. Babies are amazing and he may learn to compensate if there is damage to one area. The doctors always gave us the statistics with Jack and he’s sitting next to me right now throwing his socks at my head and eating his own boogers! See what you’re in store for!

    Hugs to you all and we’re keeping Ben in our thoughts and prayers.
    Love
    Vic, James, Jack & Ani

  9. You will always be perfect to us – no matter what. You will always be loved and cherished. You are “The Amazing Mr. Benjamin” and I have complete faith that you will meet every challenge and come out victorious. My beautiful daughter is a miracle and you are a miracle and, on another level, so is your Daddy. What a wonderful, special family you are. I love you all so much.

  10. If I’ve learned one thing in the past 13 years, it is never to underestimate a LaSala. I resolutely expect Benjamin to be as amazing as his parents are and so far, based on the progress he has made, he has exceeded expectations. I have faith that he’s going to carry the amazing awesomeness into the future. Much love to a very special family.

  11. Hey Joe and Amy, I don’t get to check your site as much as Nick but he has been keeping me updated. I want you to know that we continue to pray for your little warrior. It brought me to tears when I read this last post about Benjamin’s bleed. I can remember how terrified we were when we were told about the two areas of Caden’s brain that were filling with blood. The fear of the unknown is always the hardest. Similar to you, we were told that developmental delays wouldn’t show up until down the road but you have to stay faithful. We wish nothing but the best for your family. I truly believe that Benjamin will continue to defy the odds. He will become the “poster child” for overcoming!
    love and prayers,
    Laurie, Nick, Mason, and Caden– your NICU friends:)

    • Thank you so much Laurie and Nick (and Caden and Mason)! You guys are in our thoughts often… We hope everything is well with your darling boys and you’re happy and at home! Benjamin has been wearing the hats you gave us! I’ll have to post a picture soon 🙂 I’m going to email you soon- I’d like the boy’s carepage address if you are still updating.
      Best thoughts and wishes always, Amy, Joe and Benjamin

  12. I follow your posts, but do not comment often. I think all three of you are amazing. You are in my thoughts and prayers always. You are a special family.

  13. Thanks everyone once again for all the kind words

  14. Ditto. You all are amazing, and despite all of our challenges, it’s a blessing knowing we have such amazing friends and family.

  15. You’ve got a little fighter on your hands and I’m sure he’ll surprise all the doctors and you with the amazing things he’ll do in years to come. And, if there are any issues, he’ll tackle them head on–look at all he’s (you’ve) overcome already.

  16. Love you guys and holding you all in my heart.

  17. Hi Guys, we just wanted you to know that we always have you 3 in our thoughts, prayers and of course our hearts daily!
    It’s in our human nature to always prove them wrong, and Amy and Benjamin are a testament to that! (i know we don’t say it often enough, but we really do love you guys lots and admire your strength!!)
    love,
    the wahls

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s