Loss of Timeline

When you become a parent it’s almost automatic to write down the dates of your children’s milestones. Rolling, sitting, walking, talking, running, etc. But when they have a terminal illness like MLD, you begin to avoid those dates because it generally means loss of milestones.

Looking back at my notes, I did not put a date, or even a month, next to when Olivia stopped talking. Stopped walking. Stopped sitting up on her own. Or lost control of her legs entirely.

But I did recently write down a month for when she stopped being able to eat and drink on her own. It was this month, July 2021.

We had been working for weeks to keep her eating orally as much as possible and drinking from the one sippy cup that she could actually sip from. But there was no denying this was something she could no longer do.

Sometimes she could barely open her mouth to put food in it. Things that she could normally get down no longer worked and would cause her to choke. Even water in her sippy cup didn’t work. We thought of thickening it as some MLD families do but she simply could not use the cup to make a sipping/sucking motion at all.

She is now 100% fed through her GTube. She gets Kate Farms formula for nutrition, water and her meds all through the tube. However, we do give her small amounts of water and juice in her mouth through a syringe so she has something to enjoy and keep her mouth from getting dry.

This recent loss of development was one of the many reasons we also decided she would not be starting school this week.

On top of the eating/drinking issues she has become more lethargic and is experiencing more pain. This has required higher doses of Gabapentin and THC 3x per day. Sometimes we even have to use Valium when those don’t do the trick.

She also usually only wants me for comfort. Dad, Grandma’s and her nanny Sheena will work here and there but more often than not, it’s Mom she wants.

So as we continue to keep her comfortable amidst her decline we chose to not send her into a new environment potentially filled with germs and people she doesn’t know but to keep her home where she is most comfortable and we can spend the most time with her for as long as we have her.

8 thoughts on “Loss of Timeline

  1. Kendra and David – I’m so sorry, that is a terrible milestone to pass. I read all your posts and know how Livvy was looking forward to school. It sounds like keeping her close was the best decision, albeit heartbreaking to make.
    I’m holding your family close to my heart.

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  2. Such sad news we all knew was coming, we know your love is so comforting to her, keep up the good work Kendra, prayers surround you all with the Lord’s peace and strength for each day…love you Uncle Jim and Aunt Judy

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  3. There hardest thing is not knowing what to say that will bring strength to you, David, and family. When we were losing my Mom, knowing that the people who loved and cared about her continued to meant the most to me. Know that I care and I’d I can do anything to help, I am willing. You remain in my prayers.

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  4. God bless you and the whole family especially during the remaining time you have with your sweet girl.

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  5. As devastating as this objectively is, your family’s journey through this is evident of your strength and character in the most difficult of circumstances. While victims of random chance – such is life – we can all aspire to your perseverance and dedication to your family regardless of the cost. To add to this there’s no doubt youv’e brought further awareness to improve outcomes of MLS patients in the present and future. Thank you, Olivia and Riley family.

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