Thursday, July 19, 2012

Hello again...

little boy! I wanted to write you another letter because things have been good here. Good, I tell ya. Now, you know me... when things feel good, I get a little scared. But, gosh I'm so excited with how well you're doing, I decided to write it down. Cheer you on a bit, ya know!!

I feel like there is a moment everyday when I look at you and feel completely amazed. Amazed with how strong you are. How happy you are. And how much you've overcome.

I never have to remind myself what we were faced with upon your birth. I remember writing in my very first post about You that the doctors told us the morning you were born that you may never walk or talk, see or hear. While you were in the hospital, the future was too far away. It didn't cross my mind much. All I wanted was to bring you home. But, when we brought you home, it was all I could think about. The fear of the unknown and the devastation those possibilities brought was all-consuming for me. I just wanted you to be 'normal'. I'm sorry if that's wrong, but that's all I wanted. All the good - family vacations, walks to the park, bedtime stories... and I wanted the not-so-good too - the tantrums, the fighting between brothers, and those awful bedtimes when you won't stay in your room!

Each day, I was trying to prepare myself. If I was ok, you would be too. So would your brother. So would your Dad. If I loved you, others would too. If I believed in you, others would too. I tried to find peace, but it was too hard. Luckily, you pulled through. You encouraged me to hold on. At first with your smiles. It was like you could feel when I needed one. You could feel me needing some kind of connection; a clue that you were 'in there'.  And so it began... the milestones. Each one more precious than the one before it. The milestones I completely overlooked with your brother. The milestones that some Moms may even miss. Each one I held on to and checked off my list. You were making sounds. Following objects; left, right, up and down. You found your hands. You tugged at your blankie. You moved your arms and legs equally. You held your head up and looked around. You rolled over (now I can say it... you ROLL OVER ~ regularly). You folded your hands and reached for toys (crossing the mid-line and all!!! Can you tell I've observed some mighty fabulous OT's in my day!?!) You sit in your Bumbo and your Jumperoo and you're even starting to sit up on your own!! I'm sorry I doubted these things. I'm sorry I doubted you for a minute! It's amazing, really.

I cannot believe how much you've accomplished already. I was so worried about the sitting. Why? I don't know. I'm just crazy like that, I guess. I don't know why I didn't think you'd sit up, but I just knew it was big. Kind of like walking. I will be a wreck until you walk. OK, not a wreck, but it will be on my mind always. It's my last goal. My last "MUST" for you. Will you do it?!? I sure hope so!

For now, things are looking up! You're right on track for a 4 month old. No developmental delays yet. The chances of you having some delays (for the rest of your life, really) are quite possible because you were a premie, you were born with an infection and you had an intraventricular brain bleed. You've got a lot to fight, but my God, you just keep fighting.

We did visit the Children's Hospital this week though, to learn more about your hearing loss. You endured a sedated ABR (auditory brain response test ~ pretty self-explanatory). You were given the same two hour test at 7 weeks old, which is what was used to confirm your hearing loss, however, you were not sedated for the procedure. They wanted to test you again now that you're older (and have been medicated) to see if your loss has improved, but more importantly to determine the settings for your hearing aids, which you'll be fitted for in the next 2 weeks. (Looong, run-on sentence. Sorry.) The test was yucky! The worst part: IV's. I've had my fair share of watching you be stuck with IV's in your short life, so I wasn't present for that procedure (it was Daddy's job). But other than that, you were a trooper! You had a hard time waking up though. Apparently you like that kind of nap! Go figure. Could I get some of that for you on a daily basis!?!
Both arms and one foot were bandaged after a numbing cream was applied to help with that yucky IV.

All hooked up. Work brain, work!

Come back, little boy! IV, blood pressure cuff, and some oxygen.

Here's what we found: you are still profoundly deaf in your right ear. Yep. Nothing. No response to anything. You could be standing next to a jet engine and not hear a thing. But, now here's the interesting part... your left ear has improved. Strange, but exciting! Was it your anti-viral medication or just brain maturation? Don't ask because there's a major debate going on in our house about that these days! Your loss is considered Moderate to Severe, which really doesn't change a lot in the grand scheme of things (you're still deaf), but the good news is, you may respond to a hearing aid in that ear! It also may explain why sometimes we think you're hearing, especailly  your Daddy's voice. You are able to hear low frequency sounds at mid-level decibals. Think a man's regular talking voice (standing right next to your ear). Now, you don't hear like me because your higher frequency sounds are not heard. If you don't have both, you don't have speech (I guess... I've got to research this a bit more). The audiologist tried to explain which letters are low frequency sounds (i.e. m, j and d) and which letters are high frequency sounds (f, s, and th). Of course the others fall somewhere in between. In first grade teacher talk... you cannot blend sounds to make words because you don't hear all of the sounds. Eek! Just thought of something... reading may be tricky, but we'll cross that bridge when we get to it. So, just because you are able to hear some sound now, it's not in the form of words, but really, what 4 month old understands words!?! We're just happy you can hear anything at all! Now, with a hearing aid, will you hear more? Probably! Some speech? Maybe... we'll just have to wait and see. You'll be fitted for hearing aids for both ears soon. Because your loss is so profound in your right ear, you won't have any benefit from it, but you will learn to have something on your ear physically, which you'll have to get used to if you will be getting a cochlear implant and THAT'S the plan!! 
After dinner smile. On the menu tonight: sweet potatoes!

Well, jeesh. I started this post thinking, "I'll just give an update about your latest hearing test", but as usual, my fingers got away from me once I got started. I've learned in the last almost 5 months (what?) that when I'm having a good day, I have to keep it. I have to store it in my back pocket, or simply right it down, so I can go back to it when a bad day comes. Bad days do come. Still. But, such is life. Let's hold on though, little man. We'll hold on together. We will live.

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