Michael Warechowski IV

Updates on our sweet Michael

on August 13, 2013

Does anyone read these journal entries anymore? I don’t get many comments (on here or otherwise) anymore. This is something we talked about at the MLD conference…. That after awhile, people stop coming around; stop calling; stop visiting; stop helping. Unfortunately we are seeing this to be true. So for everyone out there, please remember that your support and kind words are what keeps us going. We need all of you. This journey is not getting easier. Michael is not getting better. For those of you who have continued to help and support us, you know who you are and we are forever grateful.

The last 10 days have been very rough here. Ever since we got home from the conference, it has been one thing after another. First we thought Michael was coming down with something – maybe a cold he caught from the travel up to NJ. He was very mucousy and lethargic. Then last Wednesday night he broke out into hives all over his body. We treated them with benedryl and racked our brains to figure out what caused the outbreak. Maybe it was his food? Maybe the new laundry detergent sample I received in the mail? So as a precaution, we threw all of his food away, emptied his stomach, gave him an enema, flushed him with water, re-washed all of our clothes, gave him a bath and guess what… the hives were back the next morning and they were worse. So Friday morning, we took him to urgent care and they put him on steroids. We still don’t know what caused the hives but they went away, thankfully. However, the steroids had a horrible impact on Michael. From Sunday morning until Monday at noon, Michael did not sleep at all. Literally, not a wink. He cried out every 45 mins to an hour (in pain? in frustration? I’m still not sure) and was very agitated. I know this was all caused by the steroids so yesterday we stopped giving them to him 2 days early. 

Michael slept a little better last night but still woke up crying about 5 different times. Keep in mind, Michael usually sleeps soundly, 12 hours straight through so this is way out of the norm for him. He also threw up this morning which he never does and on top of that, he is not pooping at all. So, we are off to the pediatrician this morning for some testing. 

My two best girlfriends are coming over tonight to hang out with Michael and I so that will be a nice treat after all this craziness.

Thank you for reading my journal. I’m trying to remind myself that “its a beautiful day.”

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15 responses to “

  1. Shon says:

    Hi! I anxiously wait for updates on Michael. I constantly worry about him. I am so grateful that you’re willing to share him and his progress with us. It is a beautiful day, and Michael is so blessed to have you and your husband in his life. I still remember seeing the news clips on Michael and marveling at your strength. I hope that everything goes well at the pediatrician and they’re able to give you some solutions. As always, I pray for Michael’s peace and comfort. And I pray for you. That God continues to give you strength. My faith is strong and I know that throughout everything, he continues to watch over and bless Michael and your family.

  2. Matt Simpson says:

    I read every single one, but really have nothing to add.

    Suffice it to say, if there’s anything I can do, please don’t hesitate to ask.

    Best Regards,

    Matt

  3. cybadour says:

    Katie, we do read the posts, we do care & it is a beautiful day.  You Mike & Michael are always in our hearts.  How can we help?  Love Chris & John

    Sent from my Samsung Epic™ 4G TouchMichael Warechowski IV wrote:

  4. Sydney Smith says:

    Please know that those of us from Camp who have only met you on one occasion still have you and your family in our prayers. I cannot comprehend the depth of sadness, grief and hopeless that you all must feel. Your trials are beyond most everything I have ever known in my lifetime. I do believe that God is in control of our universe and have to believe that good from come from all of your trials and tribulations. God bless Michael, Mike and you as well as your extended family. Sydney

  5. Flew Wilson says:

    I do read your posts, Katie, and think about you, Michael and Mike all the time. I think that Sydney’s post says it all…

    Flew

  6. KH says:

    I read your posts and pray for all of you.
    Hoping Michael begins to feel better soon and
    sleeping peacefully again. 🙂

  7. Heidi says:

    I only know Michael & your family through your posts, and I read all of them, always praying & always hoping. I have 2 boys, 21 & 16 and just can’t imagine what you & your husband are going through. However, I see your strength & love for Michael and it is so strong. May God bless you all.

  8. Gina says:

    I read your posts and pray for your precious child every day. I pray for you as well. I pray that God will give you strength, patience, and peace. We don’t know one another but I do care about you and your son and hate to hear that y’all are going through this. I am an RN and I know that steroids can cause wakefulness and I’ve known people to not sleep while taking them. I think you made the right choice by not giving him anymore.

  9. Graeme says:

    I read your posts all the time. We have a son who has MLD and seems to be just a few months behind Michael (Luke will be three in October). The things you say, the pictures you post, it’s all very familiar. We haven’t really reached out to any other MLD families, and I apologize for “lurking”, but it really helps us to see you carrying on and talking about all the things you do for Michael. I think all you can do is your best to keep him comfortable and happy, and love him to bits of course.

    “If you are going through hell, keep going.” Winston Churchill

  10. Brenda says:

    I pray for you and Michael everyday. The only way I hear about how Michael is doing , is through your posts. I pray that God continues to walk with you everyday, and keeps Michael in the depths of his hands, so he will continue to thrive and get better. I admire your strength, and your love and compassion for your son. You are such a strong person, and a wonderfull mother to him.. “Lord you said that once I decided to follow You, You would walk all the way with me, but I noticed that during the most troublesome times of my life, there was only one set of footprints. I don,t understand why, when I needed you most, You deserted me” The Lord replied “My precious child, I love you and I would never leave you. During your times of trial and suffering when you saw only one set of footprints, it was then, that I carried you.” * May God Bless you and your beautiful family.

    *Author Unknown

  11. Mandy says:

    My prayers to you and yours. Stay strong hang in there. Hugs for the little guy.

  12. EJ says:

    I read your posts and keep you and your family in my prayers. Michael is a beautiful little boy:)

  13. Tess says:

    Definitely still reading your posts and keeping your family in my thoughts and prayers. Please continue to keep us updated/

  14. Stephanie Huff says:

    Katie,

    I think of you, Mike and Michael very frequently. Your family is in my heart, hopes and prayers. I’ve never known how to reach out as we were never more than acquaintances, but I can tell you, I’m reading and thinking of you and your family often. Please never hesitate to reach out should there be anything I can do.

    My love goes out to you all,

    Stephanie Huff

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