Michael Warechowski IV

Updates on our sweet Michael

Update

on November 1, 2014

IMG_1096Hello followers. Thank you for all of the love and support since my last post. I was having a “moment” when I wrote that last entry but my outlook has improved a bit. I realized after I vented to you all, what a blessing I have in my life. Literally, after I typed that post I went into Michael’s room and all I felt was happiness. I just need to remember that when I’m having a bad day – how lucky I am to have him, how amazing he is and how much joy he brings to our lives. I’ve attached a picture of Michael from the other morning – watching one of his favorite shows – SUPER WHY!

I hope everyone had a good Halloween. Ours was uneventful, to say the least. I made a big pot of chili and the three of us just stayed in and snuggled on the couch. Looking at Facebook and seeing all of the kids dressed up made me a little sad, a little jealous. But I also enjoyed seeing all the beautiful people out there enjoying their lives; having fun and doing what you are supposed to do in life – live.

In my last post I mentioned that Michael was beginning to have more seizures and they were lasting longer than normal. I hate to report that they have not gotten any better. This morning began with a seizure at 4:55am and then vomited at 7:45am. Last Sunday he had 8 seizures in one day. This whole past week he has been averaging about 4 seizures a day until yesterday he matched his record and had 8 again. We are in the process of increasing his seizure medicine but we have to go slow. By this time next week, he should be up to his new dose and (fingers crossed) not having many seizures, if any at all. On top of all of the seizures, Michael is still having bouts of nausea and some vomiting. I have heard that the two can be connected so we are just having to wait this out as well. There is also the possibility that Michael is fighting something – a cold or virus…maybe he’s going through a growth spurt? Anything that makes him uncomfortable can trigger a seizure or PAID episode. We did have a CT scan done to check on his shunt but Michael’s Neurosurgeon has not received a copy of the scan yet (I’m just now learning how stupid Kaiser Permanente is). Apparently for Kaiser to send it to his specialist, it has to go through their home office first so it can take up to 2-weeks for his neurosurgeon to receive it. So much for a sense of urgency! Because of all of this, Mike and I have been on high alert for the last couple of weeks; just waiting for another episode to break through. I guess it’s because of the stress and “being on alert” but Mike and I are both hearing things that aren’t there – I will be holding Michael or he’ll be right here with and we swear we hear his alarm going off or him having a seizure. It’s been a bit stressful but it’s okay. We’ll get through this.

On a positive note, someone has reached out to us and offered to help. We couldn’t ask for better timing. We are so honored and grateful to announce that RIDE to GIVE (a 501-c3 public charity that helps families like mine raise money for medical expenses) chose to run a campaign for Michael from 10/28 until 11/11. They are doing everything they can to help us raise enough money to cover Michael’s medical bills for 2015. Here is the link to their page. https://www.facebook.com/ridetogive?ref=br_tf and the link to our campaign: https://fundrazr.com/campaigns/8tOzb/sh/61Edl0 If you don’t mind, please share our campaign with anyone you think might like to help.

Again, thank you for all of your support. I thank my lucky stars every day for all of the amazing people in this world that have helped and supported us. As I told my friend Maria, you will be blown away at the the amount of love and support that will come at you as you guys go through this tough journey. Maria is my friend whose 4 yr. old little girl was just diagnosed with Batten Disease – another fatal, neurodegenerative disorder similar to MLD. Her friends and family, acquaintances and strangers have come out of the woodwork to raise money, prepare meals, etc. for them – All of the things that all of you have done for me, Mike and Michael. People really can be truly amazing.
Have a great rest of the weekend everyone. And remember,”It’s a beautiful day.” (in case you don’t remember, that is something Michael used to say every morning. True words to live by, wouldn’t you agree?)

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4 responses to “Update

  1. Brenda says:

    Praying for Michael and you.

  2. Julie Williams says:

    Praying for y’all and that sweet boy! As for the CT scan you should be able to ask for a copy on a CD or DVD the same day the scan is done. That way you can mail or hand carry them to your specialists. I work in radiology at my local hospital and place images on discs for patients several times daily.

    • We forgot to get it while we were there and even if we had, we dont have time to take it to his neurosurgeon whose on the other side of the city!

      • Julie Williams says:

        Well with all that you have going on its understandable how you forgot! I would have trouble remembering how to tie my shoes! Praying you have answers soon. šŸ™‚

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