Tests, tests, tests and answers that no one should ever receive

4 Nov

In the past week Lauren has undergone a CT scan, MRI, EEG, EMG, hearing tests, opthomology examinations, a plethora of blood work, several urine tests and countless physical exams by a dozen or so doctors. The good news is that the team of doctors at the Montreal Children’s Hospital are leaving no stone unturned in the search for Lauren’s diagnosis. The bad news is that there is no good news to be found underp any of those stones…

Like the CT scan the MRI confirmed that there were abnormalities in Lauren’s brain. The white matter appears to have degraded. White matter helps the signals in the brain to travel, this is why she is displaying a loss of motor skills. When we first arrived the Neurologists had suspected a brain disease and the testing that we have received back so far have continued to support this theory.

At this point they are pretty sure that Lauren is suffering from Leukodystrophy. A disease where the white brain matter degrades. As there are many forms of this particular disease we are now waiting on the results from our blood work to determine which form Lauren has. Unfortunately no matter which,
the prognosis is bleak, the disease is incurable and progressive.

So far Lauren seems to be doing well, still smiling at us and trying her best to talk. Up until today that perfect little smile would send me into a convulsion of tears. I constantly ask myself how such a beautiful, perfect and “healthy” baby could be going through this.

Since Lauren’s 6 month checkup she has not gained much weight or height. In order to ensure her strength the doctors have hooked up a feeding tube to supplement her regular breast feeding. I never in my life thought that I would ever need to learn how to operate on of those but I have to say its not as terrifying as it looks.

At this point we want to thank our family and friends for the amazing amount if support and prayers and ask that you continue to keep Lauren in your thoughts and prayers. It has been repeated to me many times this week that God is bigger than any doctor or disease and that we shouldn’t lose faith. I will continue to pray and hope for more time with my angel.

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6 Responses to “Tests, tests, tests and answers that no one should ever receive”

  1. Clare N. November 4, 2011 at 3:30 PM #

    Stephen and Amanda- Your family is in all of our prayers here in New York. We get daily updates from Marlena and feel as though we know you both and your beautiful daughter through the many adorable photos and video’s that are shared with us. Again, prayers and hope are with all three of you on a daily basis.

    Clare
    (Roommate of Marlena in NYC)

  2. Hillary November 4, 2011 at 4:22 PM #

    Your mum is a very special lady to my husband and I and your sister a wonderful ball of energy. By chance I read her facebook update and read your blog. We may not be the same religion but we carry the same faith. Your daughter, you, your wife and sister and mother are in the forfront of our prayers and thoughts. If there is anything two strangers can do for you at all, please let us know. God bless, we will pray.

    Hillary and Ryan McQuigge.

  3. Tiffany November 4, 2011 at 6:07 PM #

    Oh Amanda, I just heard the news about little Lauren. I want you to know that I am thinking of her. She is a beautiful little girl and this is just not something that she should have to face. The dr’s and nurses and the whole stafff at the MCH are wonderful. We were just there for surgery (Annie) on Weds and Thurs, I would have come to say hi if I knew you were there…I hope you get answers soon, in the meantime, give her a big hug for me and keep well-

    Tiffany

  4. Marilyn Woolven November 4, 2011 at 9:53 PM #

    Stephen and Amanda,
    You do not know the countless number of people who are storming heaven with prayers for Lauren and your family but every day, more and more tell me that they are praying for you and asking others to pray. They have asked me to tell you this.
    Your mom tells me so often that God is not limited. We are praying for a miracle.

    with love,

    Marilyn, our family and your hometown family

  5. Tina Chasse November 4, 2011 at 10:19 PM #

    Steve and Amanda, I don’t know what to say except you will be in extra special prayers when I go to Mass on Sunday. Remember that God is bigger than all of us. I will continue to pray for your family while you go through this.

  6. Noreen Schiavi November 7, 2011 at 10:48 PM #

    Amanda and Stephen, my heart aches constantly for both of you and for little Lauren. I just don’t understand how God picks who gets what cross to bear. I pray daily for the three of you and have asked most of my e-mail and facebook friends also to pray for her. If there is anything you need from down here below the border, don’t hesitate to ask. As always, we’ll be in Mtl over the holidays and I can bring whatever you request. Love, Noreen and Paul

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