Michael Warechowski IV

Updates on our sweet Michael

Surgery Update

We had our appointment with Michael’s neurosurgeon this morning and after looking at Michael’s MRI, he agreed that something needs to be done but he is not in any immediate danger. He recommended we schedule surgery for next week. However, we had already kind of planned on the surgery being this week and had made arrangements at work and whatnot. So we are going to go ahead and get it over with tomorrow at noon. The sooner we can fix this, the sooner Michael heals and gets to feeling better. The surgery will take about an hour and a half and we should be in the hospital for a couple of nights assuming everything goes smoothly. So please keep Michael in your thoughts and prayers and when we get home, I’ll post another update!

As always, thank you all for the continued love and support.

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Good to be home! (long post)

Many of you have probably seen some pictures and posts on Facebook of our recent trip. We didn’t want to tell everyone that we were going but rather, wait until we got back to give a full update.

Last Tuesday morning we flew out to Pittsburgh for two reasons – First, to see Dr. Escolar (the world known “expert” on MLD) and get some testing. And second, to attend the MLD Family Conference. If you have been following us for awhile, you know that we’ve been up to Pittsburgh 3 times prior to this visit. When Michael was first diagnosed, we went up there every three months. Well, we haven’t been back up there in about a year and half and since the MLD Family conference was being held in Pittsburgh, we thought we might as well kill two birds with one stone.

When Mike and I travel with Michael, we break it up into 4 phases. We try not to get too overwhelmed with the whole traveling thing so in our minds, if we break it up and conquer one phase at a time, we stay a little more calm through the process. Phase 1 was getting to the airport and through security. Phase 2 was getting Michael on the plane and having a smooth ride. Phase 3 is getting him off the plane and getting our luggage. And phase 4 is getting to the car and getting wherever we’re going. Michael did AWESOME through all 4 phases. Not a hiccup, not a delay… nothing. As far as traveling goes, it was as smooth as we could have hoped.

We had our first day of testing on Wednesday. Michael got weighed and measured, got all of his vital signs taken. He saw Dr. Escolar (she couldn’t believe how tall he has gotten!), got his hearing and ears checked. He saw the PT team and they looked at his vision, the range of motion in his joints and what he can and can’t still do. PT also adjusted his wheelchair so he is sitting much straighter and more comfortably. Wednesday was full of good news! His ears and hearing are perfect (although, we are still waiting to hear the results of how he is processing what he is hearing). Dr. E said Michael looks REALLY good. She said she has never heard an MLD kid with such clear lungs and airway. I suction Michael about a million times a day so I guess it is paying off! The range of motion in his arms and legs are good – he has good overall tone. Some of the best news we got is that they think Michael can still see! He can’t see too well but we thought he was pretty much blind. The therapist explained that most Leukodystrophy kids suffer from Cortical Visual Impairment. He can see better in dim light and he can see reds and yellows more easily. They recommended some fun apps and things we can do with him to keep him stimulated.

Wednesday night we ordered room service in the hotel and just relaxed. Our Thursday appointments didn’t start until 12:00pm so we slept in, exercised and then headed to the hospital. On the schedule for Thursday was an MRI and lumbar spinal tap. Michael needed to be “put under” for these procedures. We stayed with Michael until he fell asleep and then went out to the waiting room. We waited for about an hour before we saw Dr. Escolar come out. We were surprised to see her and she had a “look” on her face. We knew something was up…

She explained that she couldn’t do the spinal tap because Michael had a large hematoma around his brain. Basically, his brain is bleeding. She is a very compassionate doctor so she explained everything very well and took her time talking to us. She said she needed to consult with the Neurosurgeon to determine what to do for Michael. After talking to about 5 different doctors, we learned that this bleed is not acute, meaning it didn’t just happen. It’s more chronic – kind of like it a slow leak that builds up over time. Dr. Escolar thinks that the shunt he had placed (as a result of his hydrocephalus last November) drained the fluid too quickly causing a blood vessel in his brain to burst. The neurosurgeons actually wanted to admit Michael, do another CT scan and then, surgery. If that had happened, we would still be in Pittsburgh and would continue to stay there for over a week. Dr. E really communicated with the doctors on our behalf and explained how different these kids are and that we need to be conservative – we can’t just jump into brain surgery! They all recommended (including Dr. E) that we see our neurosurgeon here immediately when we get home. The first appointment we could get was for this Tuesday morning. They will look at the MRI that was done in Pittsburgh and make a recommendation. Michael will probably be having surgery sometime this week :(

The conference started Friday morning. I’ll keep this part of my update a little shorter. I’ll just say – it was GREAT! Just when you think you know all you need to know, you learn something new! All of the parents of the MLD kids are so knowledgeable and amazing. We learned about new research and treatments taking place (unfortunately, none of the treatments would help Michael), ways to enrich and improve Michael’s quality of life. We met so many amazing people and let me just tell you (again) how beautiful these little Earth angels are! There were about 12 or 13 MLD sufferers, most of them having the late-infantile version like Michael. Michael had an amazing time. They provide a respite room with lots of volunteers to keep the kids occupied and active. They did all kinds of crafts, played games, had story time and even live music! It gave Mike and I piece of Mind that we could attend the conference meetings and that Michael was safe and having fun. The picture in this post is of Michael all dressed up for the Saturday night “Glow Party” and of the three of us at the Butterfly Release Ceremony. This ceremony is done every year to honor the MLD sufferers that have passed away over the last year. There was such a long list of names…very sad….
It is so good to be home. We are a little on edge not knowing what this week will bring. Obviously, we are just hoping that Michael will be okay…

As always, thank you for sticking with us. I will update again when we know more about his brain bleed. Love to you all!
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Teeth!

Mikey had his first ever dentist appointment today! I was a little nervous but I took him to see the dentist that me and my family have been going to for over 15 years. Mikey did so good and Dr. Chris said I am doing a great job brushing his teeth!

On a sidenote, Mikey hasn’t been feeling too good the last few days but we are hoping he is just fighting something. Let’s hope this tough little guy knocks it out in no time!

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Update

10177889_10152884790838916_5135776903580009836_n I want to apologize for not updating sooner – fortunately, there isn’t a whole lot to report.

A while back, I mentioned that we were going to try B12 injections with Michael. Well, he got his first injection on April 15th – a smaller dose just to get him started. He handled it well so the following week, we upped his dose. The very next day, he pooped on his own for the first time in probably 3 months. We were very excited to say the least! We began giving him the injections at home, every 3 days and guess what? He started pooping on his own every single day, sometimes twice a day! We were very excited about this. The only problem was that with each dose, he became increasingly uncomfortable – he began grinding his teeth more than usual, yawning a lot, his stridor got worse, and we couldn’t get a smile out of him for over a week. We decided to skip his next scheduled dose to see if he seemed better and he did. However, the pooping stopped right away and we are back to giving enemas.

So, what we have learned from this is that the B12 definitely helped with his gastric motility and his ability to poop on his own. It also made him more alert and awake during the day. We also learned that the Methyl part of the B12 was basically building up when it should have been breaking down thus causing the increased agitation and other side effects. So we want to continue with the B12 because of the benefits but we don’t want him to experience the negative side effects. So the plan is to add in BH4 (Biopterin – a cofactor to critical enzyme pathways) to help him break down the build up of the Methyl part of the B12. We will then slowly add the B12 injections back in and keep him on the BH4.  Hopefully that will allow him to experience the benefits of the B12 without the negative side effects.

Our Naturopath is just amazing. He is so brilliant and cares for Michael so much. Once we get the B12 situation under control, we are going to begin IV flushes of Glutathione. Glutathione is a naturally ocurriung substance in our bodies but for Michael, we are hoping that it can help clean out the toxic build up in his brain. It is basically an intracellular antioxidant. With MLD, it is ultimately the build up of Sulfatides that kills these children. We are hoping the Glutathione can pass the blood brain barrier, get in there and do some “clean up!” It certainly isn’t a cure but it might help him function better, feel better or maybe delay the disease a little. That is, if it works. We’ll try anything (as long as it is safe and natural for the most part) if we think it will help Michael in the slightest.

Thank you for reading my more “scientific” post. I’ll try to update again soon. Here’s a recent picture of Michael – look how big and handsome he is!

 

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December of 2012 was the last time we took Michael up to Pittsburgh to see Dr. Maria Escolar and her amazing team. They are our (and by “our” I mean all MLD families) go-to for questions, answers, testing and comfort in the MLD world. 

We just found out that the annual MLD family conference, which we attended for the first time last year, will be held this July 18th and 19th in Pittsburgh, PA! This is super convenient because we have been wanting to take Michael back up to see Dr. E for sometime now but traveling with him is difficult and expensive. We’ll be able to “kill two birds with one stone” this summer! 

Up to this point, we have focused on comfort over intervention. We want Michael to be happy; to be comfortable; to be where HE WOULD WANT TO BE. But now we are realizING that in order for him to be comfortable, we must intervene a little. So, the areas we want to focus on at this visit with Dr. E are:

  • How can we continue to manage Michael’s pain? Is he on the right medications at the right dosages? 
  • Without putting him through a lot of pain, how can we keep his tight (cute) little legs loose? Many kids end up needing their Achilles “snipped” because their calves and feet get so tight. 
  • We know he has bad scoliosis – that is part of the disease. But how bad is it? Should we be concerned? 
  • How far has he progressed at this point? We might need an MRI to show us where he is because sometimes, an MRI can show us how much time we have left. 
  • How is his hearing and sight? We know his sight is pretty much gone but it would be nice to know from a medical standpoint what we have to work with, you know?

We are excited to see all of the other beautiful families at the conference. I must tell you that I never knew true beauty until Michael got sick and we got to meet other MLD kids and their families. I don’t know what to say -These kids are just beautiful. Another MLD mom said it perfectly – These beautiful kids are trapped. They are with us and they live through us. They hear and feel us but their sweet little bodies cannot do what they want to do. 

The other night as I laid in Michael’s bed I thought to myself – He (Michael) is wiser than me. I truly believe this. He probably brings me more comfort than I bring to him. He makes me feel safe. He makes me feel special. How can such a small being have so much power?

These kids are SPECIAL. Believe me.

In the famous words of Lina Sereno (a wonder woman MLD mom), “Hug your babies.”

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I love Saturday mornings.

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Mar 28, 2014 10:22 AM
Yesterday was my birthday. It was also the two year anniversary of when we got Michael’s diagnosis. I will forever remember that day not because it was my birthday but because it was the day that our lives were forever changed. The last two years have been emotional, difficult, empowering, touching, crazy, sad, happy, and everything else in between.

Mike and I have learned so much; grown so much as people and as a family. I am so lucky to have this perfect little boy in my life and I thank my lucky stars every day for him.

If you have ever wondered what perfection smells like, feels like, looks like and sounds like then just look at the picture I have posted. There is your answer.

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Rough Day

Rough days are part of the territory, I know. But my sweet baby does not deserve all that he has to go through. He was up a couple of times last night, uncomfortable or scared or maybe both. Then he got an enema and bath this morning which is a very tiring event for him. That was followed by more suctioning then acupuncture. As soon as his acupuncture ended, he had a seizure then threw up. We got home and did more suctioning. He took a little nap then woke up uncomfortable. Had another seizure and more suctioning. 

My poor, sweet, brave, tough, beautiful child – he does not deserve to go through this. I would take it from him in a heartbeat if I could….

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Many people have been asking us how Michael is doing since I haven’t posted anything in a while. He’s ok. Not good, not bad.

For the last month or so he has been struggling with allergies. At least, that’s what we think it is. He’s been sneezing (which I must admit, is really cute to watch) and has a lot of mucus. We’ve even noticed his eyes being a little red. Plus, I suffer from allergies so I thought, “like mother, like son,” right? Well now I think he has picked up a little virus or something because we can tell he just does not feel well. His poor little nose is all swollen and irritated on the inside from all the suctioning we’ve been doing. I think he throat hurts because he sometimes makes a face when he swallows. And then last night he threw up, which he hasn’t done in… I can’t remember when. So we’ve started him on antibiotics and hopefully in a few days he’ll be feeling all better.

As far as his seizures go, he is still having them despite starting a new anti-seizure med called Keppra. They are a little less often but no less intense. I’d say he has about 3 per week. They started him at a very small dose of Keppra so there is room to go up if we need to. The good thing is that we can sometimes tell when one is coming on and can calm him down before it starts.

So, my birthday is this month. You might remember that my birthday is also the anniversary of when we found out that Michael has MLD. Mike does a good job at making sure I stay busy all day. He has booked me a massage and I’m sure I’ll go out to lunch with family or friends, maybe play some tennis.

One last important update…A very dear friend of ours wrote a song about Michael and got some very talented (and somewhat famous) artists to record the song. It is a beautiful, touching and sad song so have some tissues ready when you listen to it. Please go to iTunes and search “Playgrounds in Heaven (Mikey’s song)” and download it for just $1. Or click this link: https://itun.es/us/ZNpfY All proceeds go to Mikey’s Mission. Please share the song with everyone you know.

Thanks for checking in! Mikey says, “It’s a beautiful day everybody!”

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Some dear friends of ours featured Michael and I on the cover of their magazine. Below is a link to the interview that they did. Thank you Elizabeth and Graham for your continued love and support. 

http://blackdressredwagon.com/2014/01/feature/cover-story-katie-michael/

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