Michael Warechowski IV

Updates on our sweet Michael

Happy?? Birthday to me??

3 year ago today, Mike and I got the worst news of our lives. It was my 31st birthday and I remember that day like it was yesterday. The weather was perfect. Michael was perfect (well, he still is but you know what I mean). Our day started like any other – Mike had to work so I got Michael up and we ate breakfast together, played, etc. When Mike got home, I met my mom and my Aunt Susie to play some tennis. We went out to lunch then I came home to relax and hang out with my boys. That afternoon, I got a call from his neurologist. At first, I was glad to receive his call. I was like, “finally we can figure out what is going on so we can help Michael learn to walk!” I obviously had no idea that he was calling with devastating news….The rest of that day was spent in tears. We called our families and told them the news. We held Michael so tight that day and just cried and cried….

Here it is 3 years later – my birthday and the anniversary of Michael’s diagnosis. It is hard to put into words what the last three years have been like. Through the immense amount of pain and struggle, there has been so much love to balance it out. I don’t know how else to describe it. The support from everyone around us (and even people very far away) as well as the intense amount of joy that Michael brings us, is what has helped us keep it together.

Michael has officially been sick longer than he has been healthy. This way of life seems normal to us now. As long as I stay in the moment and don’t think about what used to be or what will be, I’m okay. When I watch old videos or look at old pictures, or think about life without him, I am very quickly overtaken with sadness. So today, on this stupid anniversary, I will stay in the moment. I will spend my morning with Michael, I will play some tennis, get a massage, spend the afternoon with my boys and then, go out to dinner with my girlfriends. Today will be a day like any other. I will not dwell on the sadness of this day. But as all of the “Happy Birthday” messages come in, I can’t help but think, “Happy??? Birthday to me….”

There really is only one thing that I want for my birthday but since I can’t have that, I’m asking that all of you please register for the Miles for Mikey 5k and Fun Run. You don’t have to run but it is so important to Mike and I to create memories and honor Michael. The more support we have, the easier this is on us. So please take a moment to click on this link and register. Thank you. Race Flyer 2015FINAL

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Miles for Mikey!

Here is the link to register for Miles for Mikey. If you do not wish to “race,” but would like to be a volunteer, please send me a message. Thank you for your continued support. Miles for Mikey Logo

http://www.active.com/mountain-park-ga/running/distance-running-races/miles-for-mikey-5k-and-fun-run-2015

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Spring fever!

Finally a sunny, 60 degree day here in Marietta! I know everyone has Spring fever, including Michael! This winter has been kind of depressing! Some people like the cold and the snow… Not me. Don’t get me wrong, things have been pretty good but not being able to go outside, take Michael on walks, run at the mountain or play tennis has really had me down. It’s so crazy how a little sunshine and warmth can impact your mood!

I’m sorry I have not updated in so long. Work has been VERY busy! And busy in a good way! Our studio had it’s best year last year and 2015 is off to a great start. We hired a new employee so on top of running the business and training clients, Mike and I have been working to get our new trainer ready as well. But I know you don’t check Caring Bridge to hear about the business. Let’s talk about Michael.

Michael started having seizures after his first brain surgery in November 2013. Before he had hydrocephalus, he never had a seizure. Since that time, he has had anywhere from 1, up to 10 seizures in a day. Over the last few months though, he has only been having seizures when he is asleep; never when he is awake. I think there is a name for this but I’m not sure what it is. The bad thing about this is that Michael can’t even take a nap or snooze and relax without being awoken by a stupid seizure. Literally, his days have looked like this: Get woken up around 7am by a seizure. Drift back to sleep only to be woken up by another seizure. He stays awake for a little while, tries to take a nap then 15 minutes into his nap….another seizure. This pattern goes on and on all day long. After a little phone tag, I was able to speak to Michael’s neurologist and he recommended another increase in his Keppra. I was a little upset by this recommendation because it seems like all we do is give meds, give meds, give meds…But he said he thought this new dose would help. We gave him his first larger dose on Wednesday morning and Wednesday was a typical day full of seizures. But then Thursday and Friday and so far today, no seizures. He is sleeping a little more than we are used to but I think that is because he can finally rest without being interuppted by a seizure! Maybe we finally found the dosage that his body needs to keep his seizures at bay? FINGERS CROSSED!

So, other than the seizures, Michael has been good. He made it through the winter without any illnesses or trips to the doctor. We are never completely in the “clear,” but I’m just so relieved that he has remained relatively healthy when so many other people tend to get sick. Some more good news – we got Michael switched over from Kaiser Insurance to Humana. He has a much better plan (even though it is a little more expensive) and will have access to more doctors and more coverage on the cost of his prescriptions. It is sad to leave his pediatrician at Kaiser because they have been with Michael since he is born and they have been so good with us and working with our team in Pittsburgh. I just hope his new Pediatrician will be as understanding and helpful. We have our introductory appointment with his new Ped this week.

One last exciting thing to announce… Miles for Mikey 5k and Fun Run is back! Many of you attended this fun event back in April of 2013 and we are so excited to be doing it again. Please save the date for Saturday May 30th at Mountain Park (same location as last year). I will have more details on how to register as we get all of the details worked out. If anyone knows of someone who would like to be a sponsor or would like to donate some goods, please reach out to me. We will need some help.

I’ve included a picture that I took of Michael in the bath a couple of days ago. I just had to share because he looks so good and cute!
Mikey in the tub

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Reflection

It’s been over a month since I’ve updated and the last time I did write an update, Michael and I had been pretty sick! Well, we are both good now and luckily Mike never caught our nasty sickness!

The holidays were nice. Quiet and somewhat uneventful but nice. We spent Christmas with family and for New Years, it was just the three of us. I don’t have a whole lot to report on Michael, which is a good thing! He does have a little bed sore or pressure ulcer on his ear. He has had it for over a month now and it just won’t get better. Michael prefers to lay with his head turned to one side so even though we try to keep him off of that side, he’ll turn his head. It’s kind of cute to me – like he’s rebelling a little. We put his head one way and he says, “No, I want it this way!” We have a referral for wound care because he might need a little stitch or something to close up the hole. Luckily, it does not seem to bother him but we just have to be careful because these types of sores can spread and because it is on his head, that can be concerning. As expected with this disease, Michael has good days and not-so-good days. But I’m happy to report that overall, he is doing well. He is still having seizures – usually 2-3 a day but that is down from 5-8 a day. We have an appointment with his neurologist this week so we may do another increase in his medication. We’ll see. We are still taking Michael to acupuncture every week. He’s getting massages regularly and enjoying some extra time with his grandmommy (my mom). She recently retired (from nursing) and has been spending a lot of time with Michael. This has allowed me to have some extra time to do things that I want and need to do without feeling as guilty. I know Michael just loves this (Mike and I love it as well because she usually does some chores or laundry when she’s at the house – Thank you mommy!). I always tell him that his grandmommy is coming over and in his own way, tells me, “YAY!”

As far as Mike and me – we have been SO busy at work. In the health and fitness business, the holidays and the New Year are a very busy time! I’m not complaining but I’ll admit, it has been hard for me to take some time away from Michael. On the other hand, it has been very good for me to re-focus on the studio; on my staff and my clients. The studio needs me and I’ve realized recently that I need it too. I love my business (after all, it was my first “baby”) and especially the people who make it possible. Mike and I are surrounded by, hardworking employees and so many wonderful clients who have been so generous, loving and supportive of us.
As I reflect back on 2014, a lot of feelings and thoughts flood my brain. It was a good year….a tough year….a very quick year. But all in all, it was a good, meaningful, special, possitive, motivating, enlightening 365 days filled with LOVE. I can’t help but also think about all of the beautiful children that we lost to this horrible disease (Tyler – 3 yrs, Hannah – 3.5 yrs, Harley – 6 yrs (I think), Tori – 17 yrs, Brayden – 6 yrs, Landon -10 yrs (I think), Katelynn – 5.8 yrs, Mikhail – 8 yrs, Oliver – 4 yrs, Kim, Mac – 10 yrs (I think), Loie – 3.7 yrs) I know there are many more that I cannot think of right now but they are in my heart. Every time a child dies to this disease, it is a horrible reminder of what we face. BUT! Michael brings me so much joy and happiness and he fills my heart with so much love that all I focus on is just that – joy and happiness and enjoying each beautiful day.

And that is my goal for 2015 – to continue to focus on the positive (oh and to get a little more organized :), and take one day at a time. Happy New Year.

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Sickness update

I just wish Michael would feel better! I would give ANYTHING to take it all away.

The antibiotics do seem to be helping but there is this constant rattle in his chest – a noise we are not used to hearing. Many MLD kids stay “junky” a lot of the time but not Michael. I am obsessed with suctioning so we are not used to him having anything in his throat or chest. His fever comes and goes but all-in-all, I do believe he is on the mend…proving to us all, once again, that he is a tough little fighter; that no matter what is thrown his way, he will beat IT! He just amazes me.

I am still recovering as well but feeling MUCH better. My ears finally popped today and I can begin to hear again! What a luxury!
Please continue to pray that Michael’s cold (or virus or infection or whatever it is!) doesn’t get any worse and that Michael is much better soon. Happy Holidays everyone.

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Mikey’s Sick :(

A week ago I woke up with a sore throat and stuffy nose. I thought it was a cold but it got worse and worse until I finally ended up in Urgent Care this past Wednesday (yes, the day before Thanksgiving). Turns out I had an ear infection, upper respiratory infection, sinus infection and bronchitis! I haven’t been sick in years! It’s now Saturday so I’ve been on antibiotics and steroids since Wednesday. I feel better but still very congested.

We were able to enjoy a nice Thanksgiving dinner with Mikes family on Thursday. But last night (Friday), it became apparent that
Michael has caught something from me. Despite my best efforts to steer clear of him and be as sanitary as possible, he still got something. He started with a fever and rapid breathing. Since last night he’s had a very high heart rate, lower oxygen and tons of mucus/phlegm in his upper airway and lungs. He’s extremely hot and uncomfortable. Poor sweet punkin baby.

We were supposed to have a 2nd Thanksgiving with my family today but Mike and Michael had to skip it. I did go and spend the day with my family which was nice, but it was tough being away from my sick baby. But Mike does great with him.

Fortunately, We were able to get him started on antibiotics last night (thanks to his wonderful Naturopath who loves Michael and will call it in at 8pm on a Friday night). We did some breathing treatments at home today plus tons of suctioning. We are treating this at home for now but these types of sicknesses can be scary. If he gets worse, he could end up being admitted. So please hope and pray that these antibiotics kick in and help him fast!

We hope everyone enjoyed their Thanksgiving! I’ll update on Michael in a couple days unless something drastic changes before then.

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EEG Update

I apologize for not updating sooner! Many people have been asking about the results from Michael’s EEG. Well, the episodes that Michael has been having ARE seizures. They are partial seizures, mostly on the right side of his brain (where his shunt is) but there is a small amount of activity on the left side as well. Michael’s neurologist wants to go up on his Keppra again to see if it might help. Frustrated that his neurologist keeps wanting to increase his medication even though it doesn’t seem to be helping, I called his team in Pittsburgh to see if they felt that was a good plan. They do. They said that sometimes it just takes a higher dose or a combination of medications to get the seizures under control. So this past Saturday, we increased his Keppra from 350mg twice a day to 400 twice a day. Since then, he has still been having 3-5 seizures a day. He’s had 2 so far today…. Keep your fingers crossed that his increase helps!

Michael seems to be about the same otherwise. He’s still having bouts of nausea (or “pukies” as well call them) and discomfort but is pretty good for most of the day. He’s been waking up in the middle of the night pretty consistently – usually once or twice around 3 or 4am. We usually just have to suction him and re-position him and then he’s okay. We haven’t seen a big smile from Michael in awhile but he still gives us some sweet little smirks from time to time. I think all these seizures and the med-tweaking (yes, that is an official medical term) has him in a bit of a fog. Hopefully all of this will pass.

I can’t believe Thanksgiving is here! And soon Christmas will be here and then it’s 2015! Life needs to SLOW DOWN! We have a pretty laid back holiday planned. We are having Thanksgiving dinner with Mike’s family on Thursday and then with my family on Saturday. Michael does love to see the rest of his family – grandparents, aunts, uncles and cousins. When we get together, you can tell he is listening to everyone talk and laugh. It’s good to see him alert and interested. He’ll get lots of attention, snuggles and kisses for sure! Let’ just hope and pray that everyone stays healthy and feeling good so we can enjoy all of the festivities!
I hope everyone has a wonderful holiday. Cherish every moment you have with the one’s you love. I’ll try to update again soon!

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Update

IMG_1187I am NOT happy with Michael’s neurology practice! As soon as the new Health Insurance plans and rates come out, we are switching away from Kaiser! We got approval for his EEG last Wednesday so we took him down to his Neurologist’s office to have the probes put on. Because it is a 48-hr EEG, they just send you home. They said we could take the probes off on Friday when it had been 48 hrs. and then just bring the machine back to them on Monday. But let me back up…They gave us a broken machine. You are supposed to be able to just hit a button when he has a seizure so that way, they know that what they are seeing on the EEG correlates with what we are seeing in person. Well this little “button” was broken so we just had to write down the time they occurred. My problem with that is (other than the obvious fact that an EEG costs $150/hr so we deserve a working machine) how do we know that the time on the machine is the exact time as our clocks at home? A few seconds can make a difference when you are looking at tests like these! What if our clocks were off by a minute? They might miss the episode that we wrote down! Worst of all, when we took the probes off Michael’s head, which we did as gently as possible, there were welts and broken skin all over his head. I don’t know if it was an allergic reaction to the glue but in one spot it left a blister so I also wonder if they could have been burning his skin or something? The entire time he had the probes on, he seemed a little uncomfortable – just not himself. After seeing what these probes did him, it is obvious that he was in pain the whole time. Mike and I just about cried when we realized this. Can you imagine your child in pain and they want nothing more than to tell you but they can’t??? It’s absolutely heartbreaking.

After we took the probes off, we gave him a nice, long bath and then I held him for about 2 hours. He just slept quietly and peacefully on me – something he hadn’t done since the EEG started. It was like he was saying “thank you for taking those darn things off!!”

I’ve included a picture of what the EEG did to his head as well as a picture of me holding him after his bath.

I will return the EEG machine to his Neurologist’s office today and they will be getting an earful from me. I will update everyone once we get the results. Thanks for checking in!

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EEG!

Finally! The 48 hour EEG is in progress!

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Update

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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