MEET MILO,
My name is Kim Lawson, wife of Erik, and mommy to Sam (6) and Milo (4). Life was going pretty well 3 years ago. I had a great marriage, a house next to the lake, a career on the upswing, and two sweet boys that filled our house with non-stop laughter. My youngest son, Milo, turned one on May 27th, 2007.…the day was a perfect celebration. But a week after this joyous occasion, Milo did something strange…something I had never seen him do before.
Milo was sitting on the floor and his face looked blank, his eyes started to water, and then all of a sudden both of his arms went up and out to his sides. His arms came down, and then he did it again. All I could do was stare at him in shock. His arms went up one more time, he looked around and then it was over. This whole strange episode lasted about 20 seconds. He seemed fine, so I got up to grab his bottle from the kitchen, and when I returned a few seconds later, Milo was lying face down on the floor. I ran over to him, picked him up, and he slowly opened his eyes.
I called my husband at work to tell him what had just happened, but it was so hard to describe and all I could say was, Milo just did something really weird. It was like a hiccup, but his arms went up and out to his sides and it lasted only a few seconds. Over the next week or so, I saw Milo do this a few more times, and I began to notice a pattern when they were happening. It was always when he was tired or just getting up from a nap. I could never show anyone because they happened so fast and the movements were so subtle.
My motherly instincts told me I shouldn’t ignore it. So I decided to video tape this strange behavior.
I couldn’t let another day go by, and I took Milo to our pediatrician, along with the video tapes.
Within a few seconds of watching the video, he said “it looks like Infantile Spasms, but I’m not 100% sure, so we need to send Milo to Children’s for an EEG on his brain.”I thought, ok, a spasm, no big deal. Look at his older brother, he is a complete spaz! But as we were leaving, the pediatrician said, “I’m so sorry.” I thought, “Why are you sorry? It’s a spasm, right?! That doesn’t sound life threatening.”
Later that day, I called Children’s to make the EEG appointment.
Little did I know, this phone call was just the beginning of our long journey with Children’s Hospital.
The soonest we could get an appointment was 3 weeks from that day. That wasn’t going to work for us. I’m not waiting that long to find out what is wrong. My husband then called his cousin, who is a neonatologist, and he told us to call the head of neurology at Children’s because he had interned with him. In this case, knowing the right person worked out for us and Milo was in for an EEG 3 days later.
Those three days preceding the EEG appointment were complete hell. When I googled “Infantile Spasms”, I couldn’t believe what I was reading. “90% mental retardation, never able to walk or talk, etc….I could not find one story with a happy ending. No wonder the pediatrician said “I’m so sorry.” But I tried to remain positive with the hope that maybe our doctor had guessed wrong and everything was going to be fine.
The hour that Milo was in the EEG room was the longest hour of my life. When the testing was over, Milo had pink goo all over his head from the wires that were fused onto his white hair. Milo is very strong, and apparently it took a few people to hold him down. My parents were with us and we all prayed together in one of those little exam rooms thru the pink doors in the Whale building, awaiting the EEG results. I wanted to hear anything other than “infantile spasms”. Then the head of neurology walked in the exam room and started to speak, my stomach immediately sank. I had this overwhelming sensation he wasn’t going to deliver good news. I braced myself.
“Milo’s EEG results came back positive for hypsarrythmia…meaning chaotic brain waves….or Infantile Spasms.” Everything after that devastating sentence, was a blur. I felt like I was having an out of body experience and thrown into the worst possible nightmare. How can this be?
The doctor went on to explain, “This is a rare form of epilepsy and a very difficult syndrome to treat.
This type of chaotic brain activity can contribute to developmental delays in a young human brain”.
He was throwing so much information at us that I could barely keep up. But I can tell you this….AT THAT MOMENT, OUR LIVES CHANGED FOREVER. Careers on the upswing, the house next to the lake, at this moment, all of this was meaningless.
The non-stop laughter that filled our lives to this point suddenly came to a halt and was replaced with devastation and shock. It was survival mode now. All I wanted to do was scream, cry, and hold my sweet Milo. I wanted to reassure him that everything was going to be ok, and I really wanted to believe my own words, but I was starting to feel the doubt that crept in. So, I prayed like I have never prayed before. “I will do anything, God, please take care of my baby.”
An MRI was scheduled and Milo was admitted to Children’s the next day. Luckily, the MRI didn’t show anything structurally abnormal with his brain. But this also meant that the onset of these seizures remained a mystery since no underlying cause could be identified. In the next days, Milo endured many exams, along with a lot of poking and prodding. Erik and I learned how to administer a steroid called ACTH into Milo’s leg. We were then released from the hospital and sent back out into the world that was still moving on, even though our lives had just seemed to hit a brick wall.
In the next several weeks, Erik and I had to give Milo a steroid shot into his leg every morning. And with every injection, we hoped that the medication would stop these awful seizures. I would hold Milo down, while Erik quickly rammed the long needle into the fat on his thigh. Our older son, Sam, who was three and half at the time, would also help in this daily ritual by distracting Milo with funny faces and songs.
I can’t even describe to you the level of stress we were experiencing during this time. Starting out every day by giving my son a shot just didn’t seem fair. The only positive was that Milo was only 13 months old so he wouldn’t remember any of this.
Family and friends were supportive during this, what I refer to as “hell”. Flowers and home cooked meals were delivered, along with phone calls and emails saying, “Let me know if I can do anything.” I was in such an angry state of mind, that was the last thing I wanted to hear. “Really, you want to do something? Take this nightmare away from our beautiful boy. If you can’t do that, then pray… and pray hard.” We needed these seizures to stop as soon as possible, but each episode only seemed to be lasting longer. By now, some seizures were lasting up to 10 minutes. And with every seizure, I held Milo in my arms, rocked him quietly, and hoped that the seizure wasn’t doing irreparable damage to his brain.
Milo was on a myriad of medications, along with the steroid injection. We had to keep track of when and how much he was given, along with when and how many seizures he was having daily. To keep it all straight, we had a really fancy, color-coded spreadsheet taped to a kitchen cabinet. To add to the hardship, his immune system was compromised and he developed high blood pressure. On top of weekly blood pressure checks, Milo’s regular visits to Children’s included appointments with neurologists, audiologists, psychologists, ophthalmologists, Speech and Occupational therapists, as well as more EEG’s and really fun trips to the blood lab, where it took 3 people to hold him down.
To put this into perspective we were at Children’s at least once a day, and these appointments would last anywhere from 1-4 hours which is the equivalent of a part time job. All while still trying to raise my other 3 ½ year old.
After 15 weeks of all this medication, various doctor appointments, weekly speech therapy visits to our home, Milo had ballooned up in size, almost unrecognizable and the worst part was that he was still having the seizures. The neurologist decided to slowly wean him off of the steroid and switch to a medication that at the time was not FDA approved and only available thru Canadian sources. The good news was that it was a quarter of the cost of the ACTH, and it was in a powder form. No more ramming a big ass needle into Milo’s thigh! On day two of this experimental drug, the seizures stopped. An EEG was performed and this time it came back clear of hypsarrythmia. And just to confirm this good news, Milo reluctantly kept all these wires fused to his head for a 24-hour overnight EEG test. It also came back clear of hysarrythmia. That was best phone call I have ever received in the middle of shopping at Trader Joes!
In the approximate 15 weeks Milo was having these seizures, we really don’t know how much of an impact these seizures had on his developing brain, and with regret, there is no current technology that can translate the effect that this may have had on him. But we do know that at 13 months, Milo stopped progressing developmentally and even regressed a little. It was crucial that we begin early intervention and we then met with a social worker at Children’s to gather up all the resources we could find for Milo. This included the beginning of our weekly visits to Josie, a speech pathologist at Children’s.
We originally met with Josie for an evaluation and to also get referrals for therapists in our area. A couple of days after our appointment, Josie phoned us and said that she had some time that she could work with Milo on a weekly basis. Knowing that they don’t generally offer weekly ongoing visits, we jumped all over this extraordinary opportunity. Before long, Milo became very comfortable visiting Children’s, and in turn everyone at Children’s became familiar with our little white-haired, enthusiastic and social boy!
The valet guys got to know us, and unfortunately I had to apologize every week for the rotten juice smell coming from the car. To this day, and it’s been 3 years that we have been regulars, I still don’t know their real names…so we jokingly call them Chuck and Bob. The security and check in people know Milo by name, and of course the entire speech and OT department has either met Milo or at least heard him jumping down the hallways!
I have to allow a few extra minutes before our appointments with Josie so Milo can stop and say hi to every “Nemo” fish in every tank within the entire Whale building. Nemo was one of Milo’s first words and one of the first characters that he identified with. Children’s has become such a part of Milo’s weekly routine, that even when I’m driving on Sandpoint and don’t turn up the Children’s drive way, Milo cries “Jo Jo, Jo Jo!” It is an understatement to say that Children’s Hospital is like a second home for Milo.
Josie, or “Jo Jo”, has become a part of our family and Milo just adores her. We see Josie more than most of our family members. She has also turned into my personal therapist! I can’t tell you how many times I have cried on her shoulder and how much I appreciate her honest feedback and ongoing support for our family. Josie is a part of the reason that I have started my own guild, the Milo Gray Guild for Children’s Hospital.
Sam, our older son, has also become quite familiar with our weekly routine to the hospital and he has become very popular with the volunteers in the Sibling room. If Sam has a choice between going on a play date or going to the Sibling room, he always chooses the Sibling Room. As for me, I have become quite the frequent shopper at the 4th floor gift shop! I think I bought most of our Hanukkah presents there last year!
Fast forward to where Milo is now and where we are as a family. In the 3 years since the onset of Infantile Spasms, Milo has slowly progressed developmentally, but he is still extremely delayed. He just turned 4, but developmentally he is equivalent to an 18 month old in overall cognitive and communication skills. The good news is that he is progressing. He uses sign language to communicate and has some words that he uses consistently. He can point or show us what he wants, but at the same time he also gets extremely frustrated and will pinch, scratch, kick, bite, or pull hair just out of pure frustration.
Milo has recently been tested for Autism at the Children’s Hospital Autism Center, and we were not surprised to hear that he falls on the spectrum. Raising Milo is a lot of work and at the end of some of my days, I’m exhausted, my nerves are fried, and my arms are covered in scratches and pinch marks. Milo doesn’t understand the danger of running out into a street or wandering off from me, so I keep a 24/7 eye on him. If he were lost, he would not be able to respond to his name, so he now wears a medical bracelet.
And sadly, since Milo tends to get physically aggressive with other children, especially in over stimulated situations, we stay far away from birthday parties and play dates. It’s just easier not going, than having to explain to other parents why Milo is hitting their child. I hate having to explain that Milo is just trying to communicate and I really do not care for the judgmental looks from other parents, so we stay away.
Unfortunately, Milo had a set-back in his progression about 6 months ago. Since he had been seizure free for almost 2 years, last November the doctors used normal protocol and decided it was a good time to wean him off of the last medication. We were pretty confident that Milo had outgrown these Infantile Spasms, unfortunately, Milo fell out of this normal spectrum.
Despite celebrating what we assumed to be the final anti-convulsion pill, it wasn’t meant to be. 4 weeks later I caught a glimpse out of the corner of my eye the subtle movements of the dreaded seizures returning. The very next day, Erik and I both saw him have one and our fears were confirmed. The overwhelming feeling of devastation and dread we experienced 2 years prior resurfaced all over again. Back to his neurologist (who was baffled that these were back) and a return to the testing, poking, prodding, and medication once again. This time around on the medication, Milo developed behavior that was aggressive and it was as if he was crawling out of his skin. Instead of just crying when he was frustrated, he started literally banging his head on everything and clawing up his own face. No matter how short I would trim his nails, he would still manage to scratch his face. Which would lead the outside world to ask “did the cat attack him?”…nope, just self mutilation.
Despite this behavior, the good news was that within days, the medication had once again controlled the seizures.
Every day is a blessing. Milo is the light in this family and it is an honor to be his mother.
I feel we are only beginning to understand the lessons that Milo has been put on this planet to teach us. We are looking beyond the past, the present, and the future and enjoying every moment that we have together. We have learned not to dwell on the nightmare but to recognize this as an opportunity to learn more about ourselves…And all that Milo has taught us…to love, be patient, be kind and be respectful.
Not only has Milo affected our lives, but most who come into contact with him are drawn into his orbit as if he is a bright, shining sun.
Sam loves his little brother and is fiercely protective of him. Out on the school playground, I overheard Sam explaining like only a 5 year old can, to his pre-k buddies, “Milo doesn’t understand, he has a hurt brain.” Milo has taught Sam the importance of empathy towards others and as a mother, I cannot be more proud of Sam. But this journey with Milo has not been easy for Sam. Sam was 3 when Milo was diagnosed and that is a lot for a 3 year old to digest, let alone understand. I once over heard Sam rocking his Mickey Mouse and telling Mickey that he would be ok and that his seizure would go away soon. Sam is 6 now and he feels so proud of his role as Milo’s teacher…although we are not always thrilled with what Sam is teaching Milo! Sam once in awhile will use the term “what the hell?” (and I must add, he uses it appropriately) but then Milo will walk around for the next 10 minutes saying “hell, hell, hell”.
Erik and I each have our own way of dealing with the everyday struggles of raising our two boys. Erik is a musician and has his own “musical therapy” while I turn my daily struggles into a status post on Facebook for the world to laugh at. I also understand why people drink a glass of wine at night to wind down. I swear I’m a better mother after one glass!
Like so many people these days, we feel the additional stress that worrying about the economy and our financial situation adds to the mix. If Erik and I had to worry about how we were going to pay for the last 3 years of medical bills, I’m not sure we would still be together. That is a stress that we would not have been able to endure on top of everything else. I’m not afraid or ashamed to admit that we are one of those fortunate families who have benefited from the uncompensated care fund at Children’s. Because we didn’t have to worry about money, we could focus solely on our Milo’s health. For this, we are infinitely appreciative.
If I’m ever feeling down or having a difficult day, all I have to do is drive thru the parking lot at Children’s Hospital to help put things in perspective. When I see all the vans parked in the garage and I watch how long it takes some families just to get from their van to the check-in desk, I’m reminded that we are not the only ones going through this. These families give me the strength to keep moving on.
Prior to Milo getting sick, I always heard the phrase, “we are so lucky to have Children’s hospital in our back yard.” Now that we have spent so much time there, that statement couldn’t be more true. It is the best of the best care for our sick children, and it is a place of hope, strength, and peace. I would encourage each and every one of you to just go and sit in a check-in area, like Whale 6, and take a look around and just appreciate what is happening at this wonderful place. Look into the eyes of the children and you will see that hope. Look into the eyes of the parents and you will see that strength.
Now look into Milo’s eyes, and you will see that peace.
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