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.
We got home from the hospital around noon yesterday. Michael cried the whole way home but as soon as we brought him in the house and layed him down, he smiled (as you will see in the picture). He had a good relaxing day yesterday and slept very well last night. He did throw up just before bed but the doctor said a little vomiting is normal after this surgery. He is going to have to adjust to the new (and less) pressure in his head.
When I talked to Dr. Escolar on Wednesday, she said Michael must be really tough because as much pressure that was in his brain, he should’ve been much sicker and had more severe symptoms. My son just amazes me. He is so tough, so amazing I can’t even tell you.
Dr. E also says that within about a month we should notice a significant improvement in his comfort and behavior. And I thought he was doing so well already! I’m excited to see how well he can be doing with out the hydrocephalus getting in the way.
On a unrelated note, Michael is now pooping on his own! Remember how I said he hadn’t pooped on his own in over 6 months and we’ve been having to give him enemas every 2-3 days? We’ll, he pooped all by himself a week ago last Friday, Saturday, Sunday, twice on Tuesday and again this morning! The doctors believe it is due to his acupuncture and CranioSacral therapy. I’ll take it!
So, We are just staying in this weekend, relaxing and hoping for a boring few days.
Thanks again for all the support. This week we’ve received dinner (at home and while in the hospital), healthy & unhealthy snacks, wine, balloons & flowers. And while in the hospital Michael received a little gift from his MLD brother, Landon. That really meant a lot. We couldn’t make it through all of this without all of you. Thank you from the bottom of our hearts.
Michael just got out of surgery. The surgeon said everything went fine so he now has a working shunt and the pressure has been relieved from his brain. They will observe him for a couple of days to make sure he can tolerate his feeds but hopefully we get to go home in a couple of days.
Thank you for all of the prayers and comments, love and support.
Dr. Escolar confirmed severe hydrocephalus. She told us to take him to the ER at the children’s hospital tonight so we are here now. Surgery will be tonight or tomorrow.
Thank you for all the messages, texts and emails – it helps so much to know how much everyone cares.
Okay so here’s an update. I had to overnight the CD of Michael’s CT scan to Dr. Escolar up in Pittsburgh. They want to look at it first to determine if what they saw on the CT scan was actually fluid and not just space from his brain shrinking from the MLD. I should talk to Dr. E this afternoon and then we will know what the next step is. The good news is that’s because his brain has shrunk from the MLD it provides a little extra space for the fluid if he does have hydrocephalus. So there is not an emergency need for surgery. However, if it is hydrocephalus, the sooner they put in a shunt (basically a drainage system to relieve pressure) the sooner Michael will feel better. If it isn’t hydrocephalus, we have to go back to the drawing board to figure out why he’s been vomiting and so uncomfortable the last month. That is all I have for now but I will keep everyone posted as I know more.
Again thank you all for your love and words of encouragement.
Michael threw up yesterday morning but seemed okay the rest if the day. He threw up again at 12:30am last night and I was up with him until 2am. He was spasming and uncomfortable and there was nothing I could do. I felt like I was going to have a heart attack. I cried. It’s 6am and I’m up again, laying in bed with my heart pumping. He’s got me so nervous.
Something definitely isn’t right. We’ll be taking him to the pediatrician (and maybe even to his GI doc) today.
My poor sweet, perfect, little punkin does not deserve this. FMLD.