Did you know that September is Hydrocephalus Awareness Month? If not, now you do! If you are friends with my husband or I, surely you knew this because we blasted Facebook with every single Hydrocephalus Awareness tidbit out there. We are loud, we are proud, and we love to bring awareness to our friends and family!
Yes, yes, we are thoooose people. To say we are proud of our little miracle is an understatement!
I cannot believe this will be our second year raising awareness for a condition I didn't even know existed. At this point in the game we have a pretty good understanding of what Hydrocephalus is and what it means for our son. There are some aspects of his future that are undefined and the unknown does plague us. One thing I can tell you for absolute certain...we no longer let it define Parker. We carried this diagnosis around with heavy hearts for a long, long time. We spent countless hours in tears and worrying, even as recent as last month. The worry never goes away.
The articles we've read scared us greatly and cemented a tremendous amount of uncertainty in our lives for little Parker. Plus, Parker has been about 6 months behind in all areas of development since being diagnosed, so most of what we read was actually becoming reality. We've tried every intervention and specialist out there to help catch him up. This is a battle we still fight and I'd be lying if I said my heart wasn't a little bit heavy from time to time. The worst feeling in the world is watching your child struggle. Like many NICU and/or Hydro parents, I've had to endure that since day 1.
When reading facts about Hydrocephalus I am always shocked by how common and dangerous it is and how little attention it actually gets! Supporters are constantly rallying for research dollars because there haven't been any huge advancements with the treatment and detection of malfunctions with this condition. At the end of the day there is no cure and treatment is almost always brain surgery. Obviously this hits home a bit more for me, but more than anything, it scares me to think my son has a condition that no one with research dollars really knows about. Some people are given shunts and they are perfectly fine for 30+ years! I can only hope that is Parker's case. I am too well versed, though. I know that the reality is some people fight and fight hard and still lose their battle. Our children, before they learn to speak, suffer tremendous amounts of pain from headaches and disability challenges that will impact them the rest of their lives. The worst part, as parents we are helpless in the situation.
Because the month of September is dedicated to Hydrocephalus Awareness, it is a time of reflection for me.
What Parker has been through...
Where he's been...
Where he's going...
All are constant, lingering thoughts in my head. He is still too young to fully understand the condition that plagued him at just three months old. Every single time I go back to that moment in the ER tears sting my eyes. Even now as I type. The moment in time that stood still. The moment that literally changed everything, forever. Even by some miracle Parker's Hydrocephalus goes away, we will never ever forget the people we've become during this journey. My backbone is a lot stronger and my nerves a little weaker. Some how in all of this crazy hydro journey we've been riding, my smile lines are more defined. Maybe I'm just getting wrinkles because of age, but, I have seriously spent a lot of time smiling. This boy has brought so much happiness to my life and the kid is hilarious. I would like to contribute my newfound wrinkles to that. :-)
Since my last post I can confirm a couple things.
1. Parker is HAPPY.
2. Parker is HEALTHY (no ear infections, colds or flu *knock on wood).
3. Parker stayed home ALL summer with his family, enjoying every bit of it along the way.
4. Parker learned to WALK.
All of those things are clearly reason to celebrate, especially number one. For some reason, though, the thoughts of what he can't and should do still weight heavily on me. It's a feeling that I can't control. If you've been a mother or father in this position I'm sure you can relate. I feel guilty for it, too! I know he's happy, healthy and home, but...I want more. Selfish, maybe? Determined, yes!
It's taken some time for me to hit the keyboard again because we've had a roller coaster of appointments and "mishaps" for this child. I'm still not sure that I can portray what's happening, because honestly, I don't know. The uncertainty is KILLING us at this point. We hope to have a lot figured out this fall as far as next steps for Parker.
Long story short, at around 15 months, he seemed to have plateaued developmentally. At 18 months, other than the walking, he really wasn't doing anything he was "supposed" to be doing. We do early intervention programs in our home and he didn't score so well on the 18 month assessment. To say I was devastated was an understatement. I layed in my bed and cried...for a while. Then I remembered we had another appointment at the university hospital with the Neonatologist. Maybe Parker just had a bad day? Seriously you can't expect a toddler to perform at an A+ level on command.
My gut told me to slow my roll, though. Being home with him, I have had the amazing opportunity to play with him and watch him pretty much all day and night. What he was being tested on were things I knew he wasn't doing for me, either. Yes I know what's on those tests and what he should be doing at each stage because I study that up! In fact, it took me well over three months to teach him how to put a ball in a bucket. That sure wasn't on the test as a "good" check mark. I knew in my heart of hearts that something was wrong. All kids are different, absolutely, but Parker was just struggling.
So, second assessment, he scored exactly the same. Commence breakdown in the doctor's office!
She starts off by saying, "I love seeing Parker and I hope you will bring him by to visit with me. At this time I am going to refer you to the Center for Disability and Development. There isn't anything I can do and I'm seeing some red flags here."
Cue crying...!
"I'm so sorry. I just get so emotional over this," I cried.
The doctor hands me tissues and replies with, "Hey, it's okay. You need time to grieve. Believe me I see a lot and I know you are a good mom and I know you are doing everything you can and this is hard to hear."
I then went on to agree with her and even told her that during pregnancy I didn't even consume packaged lunch meat and took my vitamins! Never missed an appointment! Yep, fell right off that wagon again. She shook her head agreeing with me. God love her.
What a feeling of defeat. I cannot even begin to describe the instant panic and worry that consumed me in that moment. When you do everything right! Early intervention for over a year! So, the Neonatologist referred us to the Center for Disability and Development. I mean, what else can you do? We have to do whatever it takes to learn how to teach Parker. Clearly, we aren't teaching him the way he needs to be taught. It was like deja' vu marching through that hospital with snot and tears running down my face. I had a good cry and then it was off to eat two cinnamon rolls and Parker's left over chicken strips at Perkins.
So, we are continuing to deal with those emotions and our appointment is this fall. We are hoping and praying that at the end of it all, we at least have some diagnosis and/or tools to help him learn. He is also scheduled for a complete eye exam at the university at the same time because we think that maybe, just maybe, some of his struggle is because he can't see close up. Who knows! At least we can say we looked into it!
Then naturally the little stinker started having these little "seizure like spells" and losing balance more than usual during the month of July. They weren't full blown seizures, but more like, dazing off episodes. If you were unfortunate enough to witness him have one you know why panic struck me. He was also falling like a mad man. Balance is not always Parker's friend so that's why when he was falling for absolutely no reason I was worried. So after many conversations with his Neurologist he decided that he was no longer going to have these spells and snapped out of it. Thank you, God. We did not want to put him back on seizure medication.
Seizures and shunt malfunctions are always a worry of ours because last time he had his ventricles checked they were significantly bigger than they've ever been since his shunt was inserted. Our favorite Neurosurgeon is back at the university hospital after wrapping up a stint at the St. Louis Children's Hospital. We are going to meet with him in just under two weeks. So, we are hoping, hoping, hoping those ventricles are where they need to be at this point.
It seems that September and October will be months of closure for us! Hopefully!
So, other than the above mentioned, we really have had a great summer with Parker. He's gotten to do so many fun things and it's been beyond enjoyable to watch him have fun. He has really come into his own with a crazy personality that so many people love. His laugh in contagious and his smile just screams trouble! The love I have for this boy grows every single day and I don't even know how that's possible, but it happens!
Looking on the bright side, as I try to do, I do look forward to spreading Hydrocephalus Awareness and knowledge this month and wearing as much blue as physically possible! I'm sure my husband and I will be flooding Facebook with our Hydro Posts and you know what, I'm not even a little bit sorry! :-)
