Friday, October 19, 2012

"Spread the worry"

My Mom told me this almost 8 months ago. Until then, I haven't been very good at it. Of course, I have my go-to people who know everything we're going through (Mom and Mom-In-Law), but I haven't used this blog too often to write about the not so good stuff. I try to refrain. You know, keep this thing happy and inspirational, yet informative (more so for myself, but also so as to not bring anyone down into the dumps).

Well. I'm going to do it. I'm going to spread the worry. Apparently it can help when you're going through a rough patch. Well, we are here at the Geurts residence. Not a REALLY rough patch, considering how much we've been through in the past, but you know, kinda stinky.

It all started Monday when we visited the Waisman Center... you knew this was coming. I was dreading this appointment because I knew we'd get bombarded with TONS of information (all important to know, but still). It wasn't so much the "news" that was difficult to hear because a lot of it we already knew or were expecting. We visited with an amazing speech pathologist named Anne Heintzelman who will be starting bi-weekly speech therapy with Jayce (it's about time... we've only known he is deaf for 5 months). We met a nutritionist who was very happy with Jayce's overall growth. And finally, we met with a developmental pediatrician who informed us that Jayce has mild gross motor developmental delay. She was also concerned with his hypertonic muscle tone in his core and lower extremities, which could delay his motor skills even further. She was able to rule out any severe brain injury when she didn't see any primitive reflexes (toe curling, legs crossing when lifted, standing on his tippy toes, etc), but was not able to rule out a Cerebal Palsy diagnosis completely. She recommended Jayce be followed by a Physical Therapist monthly to work on his tight muscles and told us to come back in April. By then, she should be able to determine a CP diagnosis or not, but reminded us that some doctors need up to two years before it is given officially. Like usual, we just wait. We work on things a bit and try to do some living in between.

Again, it wasn't so much the "news" that was difficult. Of course, the possible Cerebal Palsy diagnosis is scary and it hasn't been mentioned before. I try to remind myself that CP is like anything else. The spectrum is HUGE! He could still walk and run and play just like any other kiddo, but it may just take him longer and a little more practice to do it. The "news" wasn't bad, I guess. It was the fact that we were there. I still struggle with the fact that this is our life. Our new normal. Visiting a neuro-surgeon, opthamologist, audiologist, speech therapist and now a developmental pediatrician. Sitting in a room with one of those mirrors, you know, like an interrogation room. Eek! The nurse opened the blind on the mirror and I knew people were "observing" him. Taking notes. Watching his interactions with us. His movements. How he eats. And who knows what else. Again, I'll remind myself... our appointment went well. It definitely could have been worse and I now feel for those parents who receive not-so-good news at these scary places. Yuck!

In addition to all of this, I've been busy working with our insurance company to pay for the therapies they are recommending. Not fun. We have wonderful insurance; Jayce will receive 50 therapy sessions (whether that be speech, physical, occupational or vision therapy) per calendar year. No co-pay! After that... we're on our own. Not bad for now, but when he's 18 months (and beyond) our therapy will greatly increase to AT LEAST once a week. So, that's a lot of money to come up with out of pocket. Not to mention our plans for a Cochlear Implant. The insurance company will cover 100% of 1 implant. One. So, cross your fingers that he only needs one! Hearing aids are covered, along with the hearing aid molds. One per ear every 36 months. We will not lose them. We will not lose them!

In my quest to understand and learn more about what to do if your child has a "disability" I've found that there are many resources out there for families to help with not only the physical demands that your child needs, but also the financial burden those needs bring. There's Social Security, Medicaid (BadgerCare), The Katie Beckett program, Family Support Services, Birth to Three, Parent-To-Parent, the Deaf Mentor Program, Guide By Your Side (and I'm sure much more, but that's all I've researched, which is PLENTY for now!) In addition to Jayce's therapies and the overall family support we'll be receiving for the next few years from some of those programs, we are looking for a little financial assistance as well. Even though we are fortunate enough to have insurance that will cover most of Jayce's needs, there will definitely become a time when we need help. My goal in life is to give him EVERYTHING he needs, of course. Some of the programs I mentioned are income-based like Social Security and Medicaid (with some exceptions, of course). In a nutshell, if you make too much. You don't qualify. That's us. We're millionaires. Other programs are based on the severity of his disability. When I called Katie Beckett (I talk about her like she's an actual person not an organization) I was asked, "So, what is his diagnosis?" Um. Hmmm. "Well, profound, bilateral hearing loss and mild gross motor developmental delay," I stuttered. "Anything else," she asked? (As if that's not enough!) She explained that this wasn't really a diagnosis and that he probably wouldn't qualify based on this fact. I found myself explaining to her that they haven't ruled out CP to which she responded, "Oh! Now THAT would really help!"


She said we were welcome to apply, but explained that it is a very lengthy application and that perhaps we should wait until he's a little older and has a more severe diagnosis whether that come from a pediatrician or a psychologist or a neurologist. The same thing happened with Family Support Services.

So. Now what? I feel like my kid is one of those who could easily fall through the cracks. One of those kids who is considered "disabled", but isn't severe enough to get everything he needs. And get it NOW. I had to request that a Physical Therapist come from Birth to 3 to evaluate him. I saw the delay even when they didn't. I have to request that my primary care doctor approve visits to the Waisman Center and other therapies. I have to insist that he be evaluated in the Audiology Booth and make phone call after phone call requesting that we conduct our next ABR (Auditory Brain Response test) so that we've got the information we need for those Cochlear Implants that he is getting at 12 months of age. I'm INSISTING that someone, anyone, everyone helps us get the ball rolling. I WILL NOT look back and think, "Coulda, Woulda, Shoulda..." Nope. Not for Jayce. This is too important. So, that's me. That's how I deal with all of this, I guess. I am obsessed. I never give up. I advocate for him. I'm his biggest cheerleader (and I'm GOOD, I was a cheerleader in high school, afterall!)

Adam, on the other hand, is so that Daddy. He supports me, but I know I stress him out more than he'd like. He's still so positive. So optimistic. He thinks Jayce is doing GREAT. He sees that his muscles are a little tight, but only when he gets frustrated and wants to switch positions. He knows he doesn't move and sit up as well as Wil did at this age, but it doesn't worry him. He lets Jayce be Jayce and doesn't pressure him. For this, I love him. Adam is amazing. He's strong and hopeful and the glue that holds me together. He handles this in his own way... he takes on the financial burden. Maybe it's a guy thing. Maybe it's because he's the only one that works around here and the only one who really provides for our family. This past week has been hard for him too. He's been consumed with figuring out how we're going to pay for all of this. He's insisting that we sell all of our vehicles and get older (and yet, still reliable) cars to cut on gas and to get rid of our monthly car payment. He's selling the camper too. It's hard to see these things go and even talk about the fact that we won't be able to go camping (those 3 silly times a year), but I know this is what we need to do right now. We need to get financially stable and prepare for the next few years before it really impacts us. He promises me that once we get our barrings, we can get a camper again. Jayce is more important, really.

Ok. I'm done. In a nutshell, having a child with a disability means so much more than a simple diagnosis. It causes stress that many people don't even think about. It's hard not only on the child who has to work a little harder in life (you wouldn't know this by looking at Jayce... he's happier than a clam, which means we're doing something right), but on the family too. With all of this, I'm reminded to stop. To look at all that I have that is good. Two happy boys and a husband who supports me in my darkest days... not matter what. In the end, that's all we have... Faith, hope and love.

My message to you: if you see a family today who has a child that is disabled, whatever that disability may be... Look into their eyes. Don't look away. Smile your biggest smile. Not one of pity, but one of hope and compassion and try to let them know that you support them. That you believe in them and that you understand that it's gotta be hard, but that it's amazing that they are choosing to live. Also, kiss your kids today. Smooch them A LOT!

And for my own vanity... check out these new pictures taken by our friend and photographer, Jonelle Degenhardt!

Saturday, October 6, 2012

Just for Jayce...

Dear Jayce,

A friend of mine emailed me a few weeks back to let me know that I had not given an update about you for some time. Sure, there was your Half Birthday post, which was SUPER important, but I haven't given a, you know, update since you were about 4 months old. Whoops! I guess it's because there really hasn't been a whole lot going on around here, but wait, there HAS been!
At your latest 'regular' appointment, which was nearly one month ago, you weighed 15 lbs. 4 oz. and were 25 1/2 inches long. You were in the 9th percentile for both height and weight. This was NEWS. Exciting! You're still pretty itty, bitty, but up until your six month appointment, you were not even on the Growth Chart, because you were so small. If you're a Mommy, you know all about the "chart". It seems everytime I turn around, somebody's telling me what percentile their baby falls in for height and weight, which up until I had a premie (uber, teeny tiny baby) I always enjoyed hearing about. But, when your baby is not on the charts. When your baby is so small, it's really hard to hear. For such a long time, I dreaded those charts. I especially hated waiting to hear where you fell on the head circumference section... most Mommies don't have to worry about that section, but we did. We never wanted it to be too big (that meant fluid could be on your brain), but we never wanted it to be too small (that means your brain isn't growing). So! The fact that you're on that dumb ol' chart, which really doesn't mean squat makes me happy! We must be doing something right, you're getting mighty chubby, Mister!
You rock! You're right on, so they say. They are the therapists from Birth-3. About a month ago, you were evaluated by a speech therapist, an early childhood teacher, and a physical therapist from the Birth-3 program. I know your language and communication skills are a bit delayed due to your hearing loss, but I was more concerned about your physical development - both gross and fine motor skills. I was concerned with your lack of core strength and your balance/coordination, which can be a little off due to the fact that you can't hear. Congenital CMV itself can also result in neuromotor disabilities, which can effect things like sitting, crawling, walking and even things like holding toys, spoons, and writing. Did you know you attend "Mommy BootCamp"? It's true. I'm crazy! I research everything and probably know too much, but I need to make sure you're getting everything you need!

So the physical therapist and early childhood teacher asked a bunch of questions, made you show off your skills and filled out a couple of tests, which resulted in A LOT of paperwork. They tested your language and communication skills along with gross motor and fine motor skills, your personal and social development and your problem-solving skills (who knew babies problem solve?). They came just this last week to tell us that you're doing great. No developmental delays in any area of development. In fact, your doing everything a 6 month old should be doing, with the exception of mimicking sounds and responding to your name (obviously). This was great to hear and is easing my mind quite a bit. You do not need any physical or occupational therapy at this time, so you are starting your first Speech Therapy session at the end of the month and will continue with one hour, monthly sessions until the end of January. It's nice to have only one therapy to juggle because the appointments just keep comin'.
PBS kids with the big brother.

Speaking of Appointments...
You've had quite a few recently because of your half birthday!
We visited the opthamologist who conducted a full-on eye exam and checked the scarring behind your eye. She is very confident in your progress and is not concerned with your vision at all. We'll go back one more time around your first birthday, but after that, you're in the clear! What a relief!
We visited the Infectious Desease doctor who never really has much to say, except to keep taking that medicine? Why? We are not quite sure, but he's the expert so we listen. You're going on almost 200  days of Valgancyclovier twice daily. We'll visit him later this month to see if you can be done with the medicine... we've passed the 6 month mark, which was the original plan, so hopefully you can be a regular, un-medicated kid soon! If that man tells us to keep giving it to you because it can possibly help more than it can hurt, your father may explode, but that's another story...
Your hearing aids are going well. We went a few weeks back to get new molds made because you've outgrown your first pair. You've had some amazing responses to them! You seem to be more intentional with your sounds while they're in. When you're not aided, you're loud! Loud, I say! Wooie, you yell and squeel all day long. When your "ears are in" you're much quieter and we've even noticed you making some "mmm" and "bbb" sounds. Yippee! You're 'going in the booth' in the next month so the audiologist can actually measure how much sound you're hearing. In the not so good news... you're not the biggest fan of your left hearing aid. You pull it out and eat it every chance you get, which is about every 2 minutes. We think it bothers you because that is the ear you can actually hear out of. You're not quite use to sound, so you pull it out. It's pretty interesting, really. In the almost 2 months that you've had your hearing aids, I cannot even begin to count how many times you've pulled out that left aid, but I've never, ever seen you even touch your right one. Probably because it doesn't produce any sound for you. Hmmm, clever little fella, aren't you!?!
We also visited the NeuroSurgeon last month. He too, was not all that worried about you as far as that nasty brain bleed is concerned. However, he may be sharing some of my concern about future neuromotor issues because he referred us to the Waisman Center, which is a clinic that specializes in child development (in a nutshell). I must admit, I knew this referral was coming because of your hearing loss (they've got a pretty spectacular speech pathologist that I'd like to get you in to see), but I'm dreading the appointment. On Monday, October 15 we are going for a 3-4 hour appointment where you will see a developmental pediatrician, a psychologist, a dietician, a speech tharapist and a social worker. Eeek! Appointment overload! All the while, they will be evaluating your development and explaining what interventions you'll need. Now, if I wasn't insane, I wouldn't be so worried, but the idea of all of those people staring at you makes me nauseas! I hope they're not to hard on you. I hope they don't find any new, random things that are wrong. Ugh. It's always something. Knowing you, though, you'll go in there and knock their socks off. You'll be strong and smart and adorable (just like always) and we'll run on outta there with only good news. Look at me, being all positive and hopeful! It's you, kid. You inspire me!
Well, that should do it. One long post and many pictures later...
Keep on keepin' on, little boy. You. Are. Amazing.