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.”
I love Saturday mornings.
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.
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….
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!”
3 people this
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.
I apologize for not updating sooner – January has been a crazy month (busy at work, issues with my dad’s health, I hurt my foot and couldn’t walk for almost a week, crazy weather, etc.). I sincerely hope it is not an indication of how the rest of 2014 is going to be….
All in all, Michael is well. He is very snotty but I remember him being like this last winter as well. Luckily, it’s not in his chest – its more of a post-nasal drip kind of thing. It annoys the crap out of him, poor baby. He loves when I suction him and get it all out. He sighs afterward like, “thank you mommy, that feels so much better!”
In my last update, we were concerned that his shunt was not working but after getting a follow up CT scan and visiting his neurosurgeon, it is evident that the shunt is doing it’s job. That does not answer the question of, “why is Michael having seizures now?” His seizures have become more frequent, sometimes 3 a day. He is still having episodes of discomfort as well (maybe its related to the seizures?). We took him in for an EEG last Tuesday (the day of the big Atlanta Snowpocalypse). We should get the results this week. We will then have an appointment with his neurologist to see whats going on and if he needs a new medication or something. Just what he needs – another medication. As if getting 5 different meds 10 times a day isn’t enough…
I want to let everyone know about an upcoming fundraiser for my Michael. Some very close friends of ours lost their son last year – he was only 25 years old and his death was completely unexpected. They are obviously devastated but because of our situation, we have become even closer with this family. Their son, Nick, was a talented musician and last year they did a fundraiser called Bowl for Nick and donated the proceeds to the Atlanta Music Project. This year they have decided to donate all the proceeds to Micheal. So if you are in the area and are looking for a fun way to support our family, please come out and bowl a few games, honor Nick’s memory, and support Mike, Michael and me. Click on this link to sign up and get more information.
We hope to see everyone there (spread the word and bring your friends and family)!
P.S. I know everyone likes to see pictures of Michael so I’m including one of him that I took the other day. This was right before bedtime.
Ok, we got Michael in for a CT Scan yesterday and they sent us home without much information. The radiology tech said that if the neuroradiologist said we could go home, that means there is no “emergency” or major concern. I got a call from his pediatrician while we were at dinner last night and she said it does appear that the shunt is working however, there is a buildup in cerebrospinal fluid in one localized area. She said this is not uncommon when having a shunt placed but definitely something the neurosurgeon should take a look at sooner rather than later. We have an appointment this coming Tuesday.
Michael had a good night last night at his Nona and B-bop’s while Mike and I went to dinner. He slept well last night (even though he did still get me up around 4:30am, as he does pretty much every night) and seems ok so far this morning. As we speak, he is relaxing and listening to Alice in Wonderland on CD.
I can’t believe it’s 2014 already. In just a few months, we’ll hit he 2-year anniversary of Michael’s diagnosis. 2012 was the worst year of my life so far but 2013 was a little better. Michael turned a corner last January and had a fairly good 2013 compared to 2012. I hope 2014 is even better – all I wish for his comfort and happiness. To all of Michael’s MLD brothers and sisters out there, that is why I wish for you in 2014 as well – comfort and happiness.
The picture in this post is one that I took about 2 weeks ago. Isn’t he just beautiful? Love to you all.
I’ve been full of worry since my last update. Shortly after the surgery, Michael seemed like he was feeling better – like the surgery had worked and he was going to be even better than before. That didn’t last very long. The last two weeks he has been increasingly uncomfortable and a week ago today he had his first ever seizure. Obviously, it scared the crap out of me and we are all baffled as to why now, after relieving the pressure from his brain, is he even more uncomfortable and why did he have a seizure? Michael also threw up last Thursday which again, was hopefully going to stop after the surgery.
My concern is that the shunt surgery only relieved the pressure temporarily and now the shunt is not working and the pressure is building up again. I could be prematurely freaking out or being a worry wart but that is how I practically saved his life – by asking about hydrocephalus – By being a worrywart mother and looking into any possible option.
I am waiting to hear back from his neurosurgeon and hopefully we can get him in for a CT scan today or tomorrow to make sure that there is not fluid buildup around his brain again.
On a sidenote, we did have a nice Christmas. It was very quiet but we did get to see lots of family and as long as Michael is okay, we will get to have dinner with friends tomorrow.
So we are asking for crossed fingers, prayers, positive thoughts, love and well wishes that nothing serious is going on. Hopefully, Michael is just still recovering from the surgery.
I’m going to keep this short and to the point because I’m exhausted and I just want to go snug on the couch with Michael :)
It’s been 3 weeks since Michael was rushed to the hospital for emergency surgery for his hydrocephalus. His recovery has been slow but he is definitely on the mend. We had his post-op appointment this past Tuesday and the neurosurgeon said it does take about 3-4 weeks to feel better and since Michael is such a complicated little cutie, it will take him a bit longer. He has thrown up a couple times (which we were hoping would stop altogether once he had the surgery) and he has been a little more picky about his positioning. He can’t lay in one position for too long or he gets uncomfortable. He has also been more uncomfortable in the evenings so we’ve been giving him some Ibuprofen when we feel like he really needs it.
He is also not quite back to his baseline from a GI standpoint. We had gotten him up to a feed rate of 100 ml/hr and now we’re back to his old continuous rate of 65 ml/hr. Two steps forward and 3 steps back. That’s how it seems lately, anyway.
Michael is still giving us smiles almost everyday. He is so tough and such a little fighter. He truly amazes me.
I was out doing some Christmas shopping and general errands today and almost broke down and cried in the store. I saw so many things I wanted to get for Michael or that I thought he’d enjoy; kids out with their parents; parents with carts full of toys. This is a tough time of year but I’m holding it together.
I’ve attached a recent picture of Michael so you can see how handsome he is :) Happy Holidays everyone!