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.


  1. Stefani,
    Thanks so much for the post!! I've been dying to hear about your little CHAMP! Sounds like your hard work and dedication to Jayce's development is really paying off! I think Mommy Boot Camp has done just what you hoped it would. I find it so interesting about how he pulls out his hearing aid. So smart!! Can't wait to see you all soon! Lana

  2. Stefani,
    I so enjoy your posts....and share them with Auntie Mary and Auntie Kate. Sounds like Momy Boot Camp is just what Jayce needed besides all the love and kisses from Grandma and Grandpa. So looking forward to seeing you all at Ron's this weekend. Tacoma and Wil will have a great time together! Love ya all, Crazy Aunt Sara

  3. STOP IT WITH THOSE PICTURES! They're absolutely gorgeous! I am so glad to hear your super champ is super champin right along!