I was reviewing the timeline of events in my mind and it's amazing to me that so much time has passed and yet it seems like the time has flown by. Forgive me for repeating what I have likely already talked about, but I am using this blog as a way to figure out where I am and where I'm going. You are welcome to join me although I would think twice about that before reading further. They might be coming for me in a padded van soon.
Logan's first visit to the hospital for his "twitching" was July 21st of this year. After a video on Fred's blackberry for the doctors to actually see he was having seizures, an EEG and an MRI he was diagnosed with Polymicrogyria. The Pediatric Neurologist basically said that this would likely be a very long and very tough road. The seizures would likely be very difficult to control and we would have a hard time finding medications that would work, although we would still have to try and few and then wait and see. On top of that he had no way of telling us what this would mean for Logan as far as his cognitive and motor development. And about 10 minutes later he was on to his next patient.
Enter Dr. Tynan, the first most wonderful doctor we met at Levine. He essentially came in to pick up the pieces of our life that had just crashed to the floor. With the help of this sweet man and the wonderful nursing staff on the 9th floor, we were able begin digesting the information that we had just received. He helped us to see that the unknown about this condition was also a blessing. He reminded us that everyone is different and we are the ones who can help to determine the extent of Logan's development. He has his entire life ahead of him, so it's not for us or any doctor to determine who he is or is not going to be. Dr. Tynan proceeded to explain thing diagnosis to my parents and answer their questions, he called Fred on the phone to do the same in case he didn't get back to the hospital until late and then he even stayed until Fred got back in case he had other questions. I think it was after 9pm that night before he left the hospital. But because of him we left the next day with a much more optimistic outlook.
Fast forward through a couple of increases in the first medication, increased seizure activity and a phone call to the neurologist on call and we head in for another visit to our friends on the 9th floor. This time it's the weekend so things took a little longer to happen. After another 20 minute EEG, a 24 hour video EEG, increased meds again and another visit from the Pediatric Neurologist we were basically in the same place we were after the first visit. However, this time he mentioned brain surgery as something we may be discussing in the near future. In the words of our brilliant almost 3 year old, "Holy moly, spicy guacamole!"
Enter the second most wonderful doctor at Levine. Dr. Noonan was there to help us understand, once again, that we are still in control of this to an extent and that we only had to take it one step at a time. And as she left, she hugged me the way only one mother can hug another mother. She understood so much more than I realized, on so many levels. Although Dr. Tynan was not assigned to us on this trip, he also came by to check on us and see how things were going. Levine Children's Hospital is such a blessing.
After the last trip we hoped that things would get better, but sadly they have not. He is now on 3 medications, we've had another trip to the ER (although we've learned there is really nothing they can do), there are days when he sleeps all day and days when he fusses almost all day. He is still having too many seizures throughout the day and we don't see the smiles we used to see. Our happy, smiling baby boy is lost in there somewhere and it's so frustrating that what we are doing seems to be what is taking him away from us.
End of the recap...again sorry for the repetition, but I need to gain perspective. What's funny....okay somewhat comical, is that when I look back, that was the easy part. Over the last week things have really kicked into high gear. We started by contacting doctors - one in Cincinnati and one in Boston. Our goal is to at least get him in for a consultation to make sure we understand exactly what we are dealing with regarding his diagnosis. What we didn't really count on was insurance not covering everything. If we reach our out of pocket maximums, we could probably buy a nice car for Freddie to drive one day!
I have also been checking into and filling out paperwork for multiple types of aid. What I'm finding is that it is like learning a foreign language when trying to navigate the ins and outs of government programs and insurance. We now have an Early Interventionist through Easter Seals, a case worker through our insurance company, we will likely have a case worker through Medicaid, research group coordinators, doctor's office nurses and the list goes on. My mobile phone address book now has more pharmacies and doctor's numbers than I ever imagined! Thank goodness for mobile phone address books so I have them with me at all times.
What's tough about all of this also, is that it feels like it's taking over our lives. Don't get me wrong, I would take on the world to get the help Logan needs. But I am also concerned that Freddie's life remains as normal as possible. A delicate balance to say the least....and one that requires us AND Nana and Papa!
So here's the timeline from here, at least as I see it. Dee Dee visits this weekend (YAY!) and we try and have a relaxing Labor Day. September will be full of doctors visits for Logan - genetics tomorrow, neurology Thursday, Cincinnati neurologist September 14th and possibly the Boston neurologist at the end of the month. Freddie is full swing into school from 8:30 till 11:30 each day, we will get him scheduled for his tonsillectomy and his 3rd birthday is the 18th! WHOO HOO!!! Papa's birthday is the 10th and he has finally been able to retire, although Fred sends him on Noosa errands every now and then. Fred will get up early with Freddie in the mornings, work as hard as he can all day, come home and help get Freddie to bed and then head back to the office at night to get ready for the next day. Nana and I will plow through and try to somehow keep everyone fed and bathed.
My head has been somewhat clouded with emotions lately. We've had some really long nights and even longer days. I can tell that my praying has dropped off and I am trying to take this all on myself. I know that's not the way to handle things, but somehow I've ended up here. The good thing is I can do something about it. It's amazing to me how typing this out can bring me closer to God. Who would have thought - God and blogging, hand in hand. Okay, maybe that's taking it a little far but it's still true.
As I listened to the radio this morning on the way to Freddie's school, I realized that the words in most of the songs were not what I wanted my child to hear. Instead of getting frustrated, like usual, I turned it to the Christian radio station and the mood in the car changed. Clearly, that was God at work. The pressure began lifting from my shoulders, literally. I didn't even know the words to the song, but it didn't matter.
Why is it that we know all of this and yet we let ourselves fall so far away from God and our faith? With all of the doctors and calls and insurance, I'm trying to make it all work in my mind and logically. But I know in my heart that will result in multiple dead ends without putting God back in the driver's seat. That's what I have to do, and fast. I think we're all a little overwhelmed and the only way to get past it and still keep moving forward with all that we need to do is to let go and let God.
Hopefully everyone will sleep again tonight. I feel like I'm always talking about getting more sleep, but we all certainly function better when we get more than a few hours. That and I usually can only find the time to write when the boys are asleep and the house is somewhat quiet.
Thanks for following along with us. It's nice to know we are not alone on this journey.
1 comment:
Hey Ellen - I'm compelled to write you, because while I can't imagine what you're going through, I know what it's like to be going along with your normal life and then have it completely thrown upside down by an unexpected medical emergency. I remember thinking when Charlie was in the hospital for so long that we should be grateful that we didn't have another child, because how on earth would I be able to sit by his bedside day in, day out if we had a baby at home to be with too. But I know what a good mom you are, and I know you're giving Freddie everything you have! And how great to have your family so close by to help out!
We also met with our share of brisk docs - the ones that make you feel like they barely have time to check in. That's when George's journalistic skills were really beneficial - when I'd be feeling brushed off and like I was a bother, he'd just dive into his list of 1,000 questions. Several times doctors had to tell him we'd have to set up a meeting b/c they didn't have enough time to talk through everything we wanted to ask - but then at least we got the time we needed! One of my friends told me early on to just keep remembering that you are your child's advocate - as good as the doctors are, nobody else is going to look out for your baby like you will! Although I felt like the amazing nurses were a very close second to us! Anyway, I'm glad to hear you guys have some good, caring doctors. You all are always in my thoughts. If there's anything you need that I can do from afar, let me know!
love, Marie
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