Michael Warechowski IV

Updates on our sweet Michael

Thank you for the encouragement

on January 6, 2013

I had a chance to whine…feel sorry for myself. Blame the world. You all listened and you sympathized and now I feel better. I hope everyone knows that I don’t hate those people with “seemingly perfect lives.” I”m envious of them, sure. But I’m also happy for them because NO ONE should have to experience MLD (or any other horrible disease for that matter).

I won’t lie and say that the need to scream and cry isn’t still there. I don’ think that will ever go away but for now, I at least feel a bit more under control. So for all of you who share your positive words to make me feel better, I thank you.

Now for what really matters – Michael. He has been fairly quiet – nothing major since Christmas night. We are still struggling with his secretions. We have to suction him nearly every hour. He’s been getting more “stuff” in his lungs and that really scares me. Hence my suctioning him every hour. I keep trying desperately to get it out! We are also still struggling with his diarrhea. I don’t know if you all remember but ever since Michael had his g-tube put in and his gallbladder taken out on Aug. 21, 2012, Michael only has watery stools. We end up having to change his sheets at least 3-4 times per week. We’ve tried taking him off his supplements, cutting out any extra fat, probiotics, meds for his gut, etc. The only thing we haven’t tried is switching his formula. So after some research and speaking to other parents, we are going to try pureed, bolus feedings. What this means is that 6 times a day, he’ll get a “meal” of real food that I have cooked and blended up to a puree and put through his g-tube. I’m going to Whole Foods today to get all kinds of organic, nutritious stuff that will hopefully help my sweet baby’s tummy feel better. Insurance doesn’t cover Whole Foods and I’m scary to see what my grocery bill is going to look like but if it helps him, it will be SO worth it.

So if you ever wonder what I’m doing, you can probably guess that I’m cooking. I think this will take up a lot of my time but I do enjoy cooking and I’m happy to be able to cook for Michael again.

Wish us luck.


3 responses to “Thank you for the encouragement

  1. Paula Baker says:

    Gosh you and your family are wonderful, I can not even imagine watching my child suffer day after day. Why is this happening, we don’t know but somehow we keep on trusting that God’s plan will be revealed to us. Kiss that sweet angel for me and know that you are prayed for daily.

  2. Brenda says:

    I pray for you every day. I pray that God will ease your pain and suffering, that he will give you the strength to face each challenge. I cry all the time for Michael. My heart breaks for him and you. God has given you a beautiful little boy to take care of, and you are doing a wonderful job.
    God is with you every step of the way. Just put your trust in HIM.

  3. Shon says:

    Hi. I hope everything works out okay with the cooking. Keeping busy does help. And, as always I pray for Michaels peace and comfort.


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