Michael Warechowski IV

Updates on our sweet Michael

Ohhhh Pittsburgh…

on December 7, 2012

67635_4595199369924_1412296989_n

558912_4595199129918_881729296_n

photo

Pittsburgh has a special place in my heart now. It’s a place where we can go for answers. Where we don’t feel so alone. Not to mention, it’s a pretty cool city. We actually got to have a little fun this time. Some good friends of ours who live in Cleveland, drove 2 1/2 hours just to have dinner with us one night. The next night we were treated to dinner by another good friend who lives right there in the city.

This visit with the NDRD team was good in that we got a lot questions answered (as we always do). However, the answers were not what we wanted to hear.

Here is what we learned. I’m going to keep it straight forward and honest – that is the easiest way for me to get through this:

Our first stop once we got into town was the ENT to get a second opinion about Michael’s stridor. We got to see his little throat on the camera and when he’s having stridor, his airway is almost completely blocked – scary! We have to get a pulse/ox machine and monitor his oxygen levels. As long as he is getting enough oxygen, we won’t need to take any further action. If he is struggling to get oxygen, he’ll have to get surgery to cut out that “floppy tissue” that is blocking his airway. Just another machine to add to our collection! I swear our house is beginning to look like a hospital.

So, Michael does have vertigo. Poor baby. This explains why he freaks out whenever we move him and why he’ll cry out of nowhere. We are going to increase his Neurontin to help with that.

Michael’s hearing is perfect although, he processes things more slowly. He is still cognitively intact – he knows what is going on around him. This is good and bad. He know’s what is happening to him 😦 but he also knows when mommy and daddy are near, he knows when we are reading to him, etc. πŸ™‚

Michael’s vision is just about gone. This makes me so sad.

We were told by the entire team (including Dr. E) that Michael’s progression has been faster and more severe than most. He most likely starting having peripheral neuropathy very early which means he will probably not ever be able to smile or show expression again. His brain began demyelinating before it ever finished the myelination process which explains his fast decline. Many children develop completely learning to walk and feed themselves. Michael never did. Many MLD children at 3 & even 4 years old can still make facial expressions and smile.

We also learned that as the disease progresses and the brain atrophies, the demyelination process moves down to the brain stem and at that point, the heart and organs, and breathing are affected. This is when care becomes more difficult and you have to begin thinking about what you want to do when “the moment” comes. In Michael’s case, this process has begun but it can last years. The good news is that we are just about to the point where Michael is very comfortable and as long as we take good care of him (which of course, we will), he will be with us for a few more years. Taking good care of him means lot’s of suctioning, chest/pulmonary therapy, keeping him germ/sickness/cold free, physical therapy, stretching, etc. At this point, many people hire a nurse. I really don’t think I want to do that. Mike and I are going to try our best to do all of this ourselves.

More good news – they don’t think Michael will ever struggle with seizures as many kids do. He is on such high doses of certain medications that will probably prevent any seizures. Thank goodness for that!

On a final note, I just want to tell you about our experience flying home from Pittsburgh yesterday. A very generous friend of ours flew us up to Pittsburgh in first class and on the way home, the gentleman sitting next to Mike offered his first class seat to another gentleman who was active in the military. The military gentleman turned it down but I started to cry in amazement. I mean, how completely selfless and generous is that? There are some really great people in this world. Then, as I was waiting right outside the plane for Michael’s stroller, a stranger that was on the flight came up to me and gave me his card and offered to give us his frequent flyer points and Marriott points if we need them. I cried again. I was just so touched at how caring people can be.

MLD sucks and we are so mad, we can’t even begin to tell you. I just want to scream!

I’m so sorry, Michael. Mommy and daddy (and so many other people) love you. I would take this from you if I could. It’s not fair. You are amazing, sweet punkin. I love you more than anything.

Advertisements

2 responses to “Ohhhh Pittsburgh…

  1. Brenda says:

    My heart breaks for you and especially Michael. I pray everyday that Our Lord and Savior Jesus Christ will ease your pain. I pray everyday that your sweet baby, Michael’s body will be healed. He is so precious. May God Bless you and your family, always

  2. Shon says:

    As I read this, my heart breaks with you. As always I will continue to keep your family, and especially Michael in my prayers. I pray for his peace and his comfort.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: