A pre-post to a fun summer update

11 Aug

Let me begin by apologizing, I’ve left this blog quiet for too long…

This summer has been an amazing one, Lauren has been stable and we have been working on knocking some fun items off of Lauren’s bucket list. I will be posting a mega Bucket list revisited post this week, so if you’d like you can take a look at the original post: A Mother’s Bucket list for her child from last year in the meantime.

When communicating to others about Lauren’s disease and her journey I have always tried to take a positive approach. I have learned to stop asking why this has happened and just thank God that I can still hold my baby girl right now. Our family has been blessed by the gift of extra time.

I’ve often had people tell me that they are praying for a miracle for us, and I always thank them. I do however think that we have already been granted one. Lauren is still alive, and her disease has not affected her as harshly as it could have. Don’t get me wrong, it absolutely sucks, it’s hard and I HATE Krabbe disease, but it could be worse.

Originally we were told that children with Krabbe Disease have an average lifespan of 13 months.  I have to tell you though, I’ve never believed that could be the case for Lauren. I mean she only started showing symptoms in October at the age of nine months, and she was already ten months old when we were told that she was dying.

When we visited with a specialist in pittsburgh, Dr. Escolar, gave us a better idea of timelines and although she doesn’t like to give out times (since every child is different, and some surprise everyone) she said that three to four years would be a realistic expectation.

This news made the past two years a bit easier, we had hope and strength because we never really felt like Lauren’s time here was pressing on.

Since January I have been shaken. Updating this blog has become more difficult. We have lost so many of our Krabbe children this year. A reminder that there is no timeline, nothing can be planned and that we MUST live for the moment. I feel like I’ve been saving all of my energy for living in the moment but that I don’t have anything left for much else.

I have never felt like telling people that our daughter is dying and have tried in the past to express that our daughter is living. But lately, I’m worn … my strong composure is cracked and the words dying have escaped my lips more than I like to admit. Sometimes I just feel that it’s a reality that I live with everyday that is sometimes forgotten. I’ve not looked for pity on the subject but more an acknowledgement of the reality from others.  I guess in the end I’m looking for an emotional balance, a way to acknowledge the truth but to also to not waste the moments that we have left.

Lauren is two years and seven months old now. Our strong little miracle, she lives a very hard life with grace. Her disease has moved forward and she has fought it along the way. When she has a painful spasm she holds her face and waits it out, barely letting out cries. She has learned to recover from the frequent startles that come to her throughout the day, and even puts up with Buddy barking at the mailman. She is amazing.

I didn’t really share this earlier, because well… it depressed me. But I would like to share some of her clinic results. Lauren is part of a study that tracks her disease progression, In November we had an MRI done, at the time the amount of damage in her brain had become significant. I knew that something was starting up in October when Lauren began to have temperature issues – her body temperature would drop to 32.4 C (underarm temp) and would stay that low for hours. If you would kiss her, you would swear that she just came in from playing outside.

The MRI showed that Lauren was beginning to show demyelination of her brain stem. The brain stem controls important things like body temperature, and respiratory functions and other really important life-sustaining stuff (said like a true non-doctor). These results were hard to swallow. Lauren had been so “healthy” that we never thought that the disease could have progressed this far so soon.

But life has since adjusted, Steve and I no longer flinch at Lauren’s cold temperatures and her apnea has become almost normal to us. We’re used to seeing our child hold her breath for thirty seconds at a time (She’s even so good at it that her colour doesn’t change!)

In June, we received some good news – Lauren has been stable since her last MRI, the damage has slowed down along with the demyelination. Phew! and talk about a parents intuition Steve and I have both felt that this has been true since about March. Things have since been easier and more predictable.

The stability has offered us a wonderful gift – the right time to go and explore our world with Lauren as much as we can. We have taken full advantage, Lauren has done many wonderful things this summer. and I will leave you with a fun picture from our trip to cuba. (Yes! we took Lauren to the Ocean)

Thank you for reading this and for hanging in there through my semi ranting ramblings, I promise for a picture heavy and fun post coming up this week as we revisit our Lauren’s bucket list.

Lauren gets a kiss from a very lucky Dolphin

Lauren gets a kiss from a very lucky Dolphin


9 Responses to “A pre-post to a fun summer update”

  1. Courtney August 11, 2013 at 2:43 PM #

    Love reading these updates!!
    Let try and get together soon for a dinner 🙂

    • lifewithlol August 11, 2013 at 4:41 PM #

      I would love that, let me know what works for you. Sending you a big hug!

  2. Debbie Strongilos August 12, 2013 at 7:39 AM #

    I’m so happy to see that every moment you spend as a family is special. Thank you so much for sharing this with us. You have put a smile on my face this morning!!!

  3. Gloria Loughheed August 12, 2013 at 8:15 AM #

    Thanks Amanda for this update and the wonderful picture of you, Stephen and Lauren being kissed by the dolphin, how cute! Hugs to all of you.

  4. Kathy Nakashima August 12, 2013 at 11:29 AM #

    Such a beautiful family in every possible sense, inside and out. This Wednesday is my Justin’s 4th angelversary (he was never precisely diagnosed but it was a severe degenerative neurological disease). Reading your blog reminds me of all the wonderful, and all the sad. Thank you for sharing so generously.

    • lifewithlol August 14, 2013 at 10:36 PM #

      Hi Kathy,
      Thinking of you and your Angel Justin today. Sending lots of love your way.

  5. ann morfittt August 14, 2013 at 12:15 AM #

    Lauren looks so happy! That reenergizing ocean! Love Ann

  6. Lynda-Marie Louis September 2, 2013 at 9:42 PM #

    Hi there,

    I am from Montreal, ( french mothertongue).

    My son has been diagnose with Krabbe disease the 8 of august of this year. He is 5 months old.

    My family and I live one day at a time with our precious.

    It is the first time I am reading about a family who lives the same than us.

    God bless you and your dear Lauren.

    • lifewithlol September 2, 2013 at 11:03 PM #

      Hi Lynda,
      I’m so sorry to hear about your son’s diagnosis. I just you an email, please let me know we can help with any of your questions. We would like to offer you our support, this is a very difficult thing to go through. Living one day at a time is what we do as well.


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