Thursday, May 28, 2009

TAG - I'm It! Five Things I Love About Being a Mom

I've been tagged (and am late at responding!) by Lucas' mommy, from the blog, Life with Lucas, to list the five things I love about being a mom. I could list so many things, unconditional love to baseball games, but here are five things that popped into my mind from the get go.

Five Things I Love About Being a Mom to

Ryan, Kailyn, and Aiden

One: Unconditional Love - I remember when I was in college, I brought home two cats to my mom's house. I didn't think I could love anything more than those two cats. Then I got married and became a mother. I was so scared too, about having a second child. I worried about how I could love another child as much as I loved my first? But I did. Then eight years later, came Aiden and a whole other new love. This is the one thing I love most about being a mom is the unconditional love for each child is just unbelievable!

Two - Snuggles - There is nothing better than getting one of my kids in bed with me and snuggling all over them! Ryan was always my biggest snuggle bunny. As a baby he'd snuggle his head right into my shoulder and as a toddler he'd nest himself right into my chest. Kailyn I worried about, because as a baby, she just wasn't a snuggler, but now ... watch out ... she'll fight her daddy for any bit of snuggle time with mommy - and she always wins! Aiden's a little snuggler too! He'll lay his head on my shoulder forever and I just love every little bit of it!

Three - Unlimited Hugs and Kisses, THEY'RE FREEEEE! - In our house we are always giving hugs, kisses, and saying "I Love You". My own dad never let me leave the house until I came over planted a kiss on his cheek and he always told me, "Be safe. I love you." As a child, it got on my nerves, as a mom, I have a whole new appreciation for this. Oh, and butterfly kisses and eskimo kisses ARE definitely included here!

Four - Family Traditions and Lil' Sweet Nothings - I think family traditions are so important, but even more important to me are the little repetitive things, no matter how cheesey, I want my kids to remember so that when they grow up, they can look back with a smile and say "Remember when ...". For example, notes in Kailyn's lunchbox or on every family roadtrip we have a "theme song" we play over and over; then whenever we hear the song later, we talk about "the trip" it belongs to.

Five - Watching them Grow
- I hate how fast they are growing (I can't believe Ryan is already 12!), but it's just amazing to see who they are becoming. I love the different stages they go through ...belly laughs as an infant, first steps and first words; all the great "why" questions around age 3 (i.e. "mommy, why's that house blue? mommy, why's the grass green? mommy, how'd that baby get in your tummy?"; age 5/6 - HELLO?!? GIRL'S DAY!; age 10 - independence starting to set in, yet still very loving; Age 12 - Puberty ... it's not the funnest stage, but it is fun hearing his voice change, being able to joke around a lot more sarcastically, and seeing the teenager that's about to emerge.

Yes, being a mom has made my life complete. Each one of them has fulfilled a part of me in their own way. Each one of them has that certain something about them that makes their mommy smile each and everyday! Each one of them holds a very special place in their mommy's heart and soul ... a love that no one can take away.

I'm supposed to tag five more moms now, but I think most of them have been tagged. So if you haven't been tagged and you have the time to share your five favorite things, TAG ... YOU'RE IT!

Wednesday, May 27, 2009

Balancing Act

I often wonder if our journey would be different if Aiden were my first child and not my third? This journey is an amazing one, but it is not simple. I don't know if I could have handled the stress then as I do now, especially with two older kids. The one thing I learned, and continue to learn, is to not let Aiden's deafness define who he is, but even just as important, don't let it define who I am either.

But it's easy to do.

It's so easy to get caught up in Aiden's world of appointments, research, and telling his story. Everyone asks about Aiden ... "Guess what Aiden did today!" ... explaining the equipment on his ears ... the questions and stares when we're out ... the questions from family, friends, and complete strangers ...

... when I take a step back and look into our world, my older kids often hear ALL ABOUT AIDEN.

Then things happen. Grades have slipped, behaviors have run wild, Kailyn continues struggling in math but has now added reading comprehension to the list (it shocks me though that they expect a second grader to multiply and divide - you gotta be kidding me) and I'm flooded with a downpour of mommy guilt.

  • Have I spent too much effort on Aiden and not them?

  • "What ifs" constantly running wild in my head

  • Overwhelmed with the feeling of having to possibly learn two new disorders (ADD and puberty ... really, puberty should be classified as a temporary disorder!)

    • In my make-believe world, Ryan would be responsible for his learning. He'd do his homework without us constantly checking in. He'd clean his room and pick up his wet towels and dirty underwear. Puberty would be easy and he wouldn't argue about every.little.thing. He'd go above and beyond showing how bright he truly is, without us constantly pushing him to do it.

      In my make-believe world, Kailyn wouldn't struggle in school. She'd be able to hold her attention much longer, and maybe, just maybe, things would just click for her. We wouldn't battle everyday after school to get homework done. She'd always feel included and know she's just as loved as her brothers; she wouldn't get so down on herself. She'd always be the charismatic, charming, lovable, entertainer that she truly is.

      In my make-believe world, Aiden wouldn't have so many appointments RIGHT in the middle of the day that disrupt so many other things. I wouldn't have to talk to him ALL day, narrating every thing we do to the point I have little patience for talking, much less arguing with his siblings by the end of the day.

      But this make-believe world would be boring (easier, but boring). Perfect is boring.

      We do our best as parents to balance our life between each of our kids and ourselves. This is not easy when one child takes up such a big percentage of the time. We're very open in discussing our feelings and obstacles faced. Are we doing enough though? Am I giving enough? Are my kids reaching out? What I do know, is that my older kids need their mommy just as much as their little brother.

      I've come to realize that it's so important to find that balance between full time language therapist and mommy to three kids.

      I've come to realize I expect so much more from my 12 year old son, yet he still needs lots of guidance and LOTS of mom hugs. He's my first born. That always holds a special place.

      I've come to realize that by just having mom/daughter time each night, whether playing teacher or nail salon, when all I want to do is crawl in bed, makes her feel just that much better. She's my only daughter, another, totally different special place.

      I've come to realize that my babies have had such an 'effin rough year plus some. Their grandpa, whom they absolutely adored, became someone they didn't know, then passed away; three months later their baby brother was born deaf ... "Deaf? You mean he can't hear us talk to him?" they'd ask; seven months later they were uprooted after living in one place their whole life to new schools and all new friends; and to top it all off their mom has been consumed with trying to understand how to raise a deaf child in our family's hearing world.

      They should be the ones screaming "I can't take anymore!"

      But they don't. They're such damn good troopers. They don't complain. They just go with it. And they are always so happy to see Aiden, ask how his day was. They love on him all the time; with no regrets shown.

      So Ryan, my straight A student, brought home a D and two Cs a report card ago. Who cares. It's seventh grade.

      So Kailyn, my "loves herself more than anything" entertainer, is struggling keeping her attention in school and therefore with her own insecurities. We're testing her for ADD, will deal with the results, sign her up for karate (which she wants to take), and keep reminding her of what a wonderful, smart girl she is, all around.

      And Aiden ... we'll just keep trucking along with what we do ... teaching him to listen and speak. All in the mist of raising his siblings, who by the way, are excellent language opportunities for him!

      This whole "balancing" act isn't easy. We'll get there though, like my dad used to say, come hell or high water.

      Sunday, May 17, 2009

      101 Ways to Wear a Cochlear Implant

      OK, well maybe not 101, but I feel like we've tried just about that many. In the past two months, we have found that there are things we fight, and things we don't. In the beginning, we fought and fought and fought to keep the processors on Aiden's ears ... needless to say, after mommy was about to have a nervous breakdown constantly chasing baby around to put the processor back on ear and coil back on head ... baby won.

      Option #1 - Cochlear Babyworn System: Where it all started ...
      What you need:

      1) Nucleus Freedom BTE (separate processor and controller)

      2) 6" coil (what we use anyway)

      3) Babyworn Accessory Pack - This consists of two retention cases to hold the controller which is held onto clothing using either the ONE alligator clip or the ONE safety pin that comes with the pack. Oh yeah, and it comes with a hook and loop fabric panel too ... no clue what it is or how to use it.

      4) Snug-fit (or you can use longer ear hooks, I like the snug-fit for this setup) - Adjustable upper and lower earhook to help the processor stay on the ear. The trick I learned from Drew's mommy is to adjust it to the right fit, then LEAVE IT! It's so hard to try and fit it on an active baby each and every time you put the processor on. Exhausting.

      5) 10" cable to connect the processor (on the ear) to the controller (clipped/pinned to the clothes)

      6) Wig tape - Christian's mommy recommended I use Topps. I'd tried the generic brands in the very beginning and they just don't work as well as the Topps. It does help keep the processor on, but once it's ripped off, it usually doesn't stick again and has to be replaced with new tape.

      7) Oh yeah, and a whole lot of patience.

      Check out the complete diagram here on the Cochlear website and below on Aiden's ears.

      I love this because the processor, which houses the microphones, sits on the ear. This provides better sound localization, gets Aiden used to wearing the device on his ear, and allows for transition to the full behind the ear (BTE) setup, which you'll see in the third option below.

      I don't like this setup because of all the cords, but that's little compared to what it does for him.

      Aiden constantly pulled the processor off his ear in the beginning and this is how it always ended up ...

      ,.. which in turn meant mom was constantly chasing baby to reapply coil because the weight of a hanging processor pulls the coil off. Time. and. Time. Again.

      So after this rough week, I decided enough was enough and called our audiologist, "This is not working. We need another solution or I'll be the one checking in at Hopkins."

      and so onto ...

      Option #2 - Full BTE Pinned/Clipped on Shoulder - Where we're at most of the time now
      What You Need
      1) Full BTE setup all together.

      2) Something to hold the BTE on the shoulder. We use the retention cases for now, but as you can see HERE, "Toes" mom uses hairbands and a safety pin, which we'll be going to once all of our retention cases break.

      3) A longer coil cord. Since it has to reach from the shoulder to the head, we traded in our 6" coils for 10" ones.

      4) Patience. The coil still falls off ... he's a VERY active baby, it's going to happen. Plus he still rips the coils off his head, yanks on them hard enough to tear the BTE from the retention case and then uses it as a teether or as a whip on the cats. Yes ... LOTS of patience.

      From behind (you can see that nothing sits on his ears) and from the front you see the BTE pinned to his shoulders and the wires connecting the coil, but nothing on his ears.

      Again, lots of wires and you have to be careful not to cover up the processors (i.e. with a jacket) since the microphones need to be exposed to process the best sound quality.

      *Note: the retention cases can hold, but are not meant to hold the complete BTE unit and therefore break easily. It is around $32 for a Babyworn Accessory pack which includes ONE alligator clip, ONE safety pin, and that hook and fabric loop panel thingy. So, all in all, these two clips for $32 do not last long.

      So I decided to try option #3.

      Option #3 - Full BTE on Ear - Where we'll eventually get one day (hopefully)
      What you need:
      1) Full BTE setup all together

      2) 6" coil (what we use anyway)

      3) A WHOLE HELLUVA LOT OF WIG TAPE ... I'm excited to try the 3M wig tape which Landry's mommy recommends. You can get it here.

      4) and once again ... lots of patience.

      (check out that bedhead!)

      What I love about this set up is that the only wire is the coil. Aiden actually didn't mess with this as much as the babyworn set up, but this seems so heavy on his ears and I find myself constantly replacing the wig tape, because once the BTE falls off, the tape is done and you don't have the snugfit to help keep it on the ear. This is hard to do when you're out and about, which with three kids, is ALL the time.

      PLUS, if it falls off his ear, and I don't see it fall off, there's no retention case holding it to his clothes ... very scary when these things are worth more than my husband's Harley!

      So there you have it. Three ways we've tried wearing the Cochlear Freedom. If anyone else has any other suggestions, please, please chime in! Options are always a good thing!

      Friday, May 15, 2009

      Friday Fun Day

      We started our day driving into DC to Nat. Geo. studios to finish up the photo shoots for Aiden's piece in an upcoming piece that includes the amazing world of cochlear implants. Despite the fact it was all during his nap time and that we had to take many breaks, he was truly a real trooper. I forgot my camera, but captured what I could of a nonstop toddler on my iPhone, which, I've come to find out, does not take the best "in action" pictures.
      As soon as he hit his carseat, he was out. Which I wasn't too excited for as I'd rather him sleep at home then in a car when I can do nothing productive (part of my ADD/OCD etc problem). But, I have to say he slept on the way home, ate lunch, then took another nap at home! WOO HOO!

      I actually had to wake him up from his nap (can't believe I actually did this) at 4:30pm to head to the Johns Hopkins Cochlear Implant picnic. What a nice time we had! Aiden's daddy had to work, so his brother, sister and I all piled into the family vehicle and headed out, not having a clue what to expect. It was very nice to meet so many wonderful people. I talked to so many people and got many different hearing loss perspectives. This is what's so wonderful about this world, no two stories are alike. We met people who have been in this journey for quite some time, people who are just beginning (like us), and parents who are about to embark on this amazing endeavor. It was a great time to not only meet other mom's in my shoes, but even more so to hear first hand from the adult CI users themselves.

      Our miracle makers ... Aiden's surgeon, Dr. Niparko
      and his audiologist, Miss Jill

      By the time we got home, Aiden was done. He had such a great day of hearing. He didn't eat too much at the picnic, so after his bath I gave him some cereal and fruit to fill his belly in hopes of a full nights sleep. Usually, after every bath I only put back on one implant to test that particular ear. Tonight, he was done with hearing altogether and showed me in his very silly ways. Here's my silly little man being his silly little self. (Stop the music on the right before playing the video!)

      Monday, May 11, 2009

      Taking Time for Me

      Friends + Cocktails + Beaches & Sun rays on Bahama's Paradise Island =

      a refreshed. rested. rejuvenated. and ready to go again mommy.

      This is how I feel after four days in the Bahamas with my two best girlfriends from Texas. It was a much needed vacation from the nonstop life I've been living the past couple of years. When they first started planning the trip, I couldn't shed that guilty mom feeling and it was so hard for me to say, "Yes, I'll join y'all in the Bahamas", but it really couldn't have come at a better time.

      I tried to justify to myself (and have others justify to me too) exactly how I could go away. Then I looked at my calendar for the past two plus years. I've been taking care of everyone else but myself. Between my dad and Aiden, I've been running from appointment to appointment, fighting with insurance companies, consulting with doctors and specialists on the best game plan, finding the best doctors and specialists to help devise this gameplan, fighting with insurance companies (this NEVER ends) etc. etc.

      Then I remembered a piece from Erma Bombeck's "The Special Mother":

      "...But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive..."

      I knew I needed this for myself and for my family.

      I have two of the best girlfriends life could ask for. I've known Andie and Helen for over 11 years, they aren't only my best g's, they are my sisters I've never had. It was so great just hanging, laughing, and catching up as we soaked up the rays and drank cocktails all day long! It was the rejuvenating medicine my soul has been searching for.

      Here's the breathtaking view from our room. I couldn't get enough of it. Our all inclusive we booked, overbooked, so they sent us next door to the Atlantis, which allowed us to take full advantage of all the amenities on the grounds! That included their spa (which was oh so wonderful), waterparks, lazy rivers, aquariums, and beautiful pools and beaches! This is definitely a place I want to take my kids one day.

      me and my girls loving our time away together

      By day four, my heart was missing my babies and I was ready to come home (well, seriously, I could have tried and stayed a couple more days). I can't wait to plan a getaway like this for Aiden's daddy and me.

      And a HUGE THANK YOU to my mom, who took off a week of work and drove in from Wisconsin (she won't fly) to take over my motherly duties while I was away. She came in a few days before I left, so I got to spend some wonderful, much needed, time with her too. She hasn't been able to spend a whole lot of time with Aiden since he's been born, so she really had a great time bonding with her youngest grandson. I was so worried about Aiden's CIs and the language he needs right now, but I had to let it go and know that everything was going to be just fine, and it was. She said she had the best week ever and truly enjoyed every moment.
      Thanks again mom ... I love you!

      My husband, who couldn't take off since he's recently in a new job, did a fantastic job as well playing Mr. Mom. I came home on Mother's Day to a clean house, laundry done, and my family waiting to take me out to eat.
      He's so good to me!

      Monday, May 4, 2009

      Bilateral Soundbooth Testing

      Today we had another appointment up at Hopkins, this time to see how Aiden was doing with his left ear after 2 weeks post (re)activation. This was the first time since his left ear was ever activated that we got to see booth test results for this ear.

      We've been seeing problems at home and therapy with Aiden responding to the /s/ sound since his left CI was activated. /s/ is a very high frequency sound (greater than 4,000Hz) and is heard around 25 db. We knew from Aiden's last soundbooth on his right CI (which was done the same day they reactivated his left CI), that he was hearing between 15 and 20db across all frequencies. We confirmed today that his right ear is still doing great, but that we did need to fix his map on his left CI.

      I have to say though, that I am still VERY impressed at Aiden's results! For his left ear, he tested pure tones between 20 and 30 db! For speech awareness threshold, he tested at 25 dB in his left and 15 dB in his right. His left ear audiogram sorta looks like a hill - he tested at 30 dB at 250 Hz, rose to 20/25 dB from 500 to 2,000 Hz, then dipped again to 30 dB at 4,000 Hz (this is where the /s/ sound falls). So his map was changed to adjust for these dips at 250 & 4,000 Hz. Aiden's audiologist also gave us two other programs to work with in case we still don't see much response to /s/ or /m/ in the next week. He did respond right away to both sounds in her office though.

      All in all, Aiden's been doing great and we continue to be amazed by our little man everyday! Since his left CI was activated two weeks ago, we've really seen some good progress. For example, his grandma came in town to visit, and before Aiden ever saw her she called his name. I figured he'd hear her voice, but look at me since it was just another female voice. But he turned around and looked right at her and smiled! We've also noticed that he's recognizing sounds from longer distances. Just over two weeks ago, his hearing bubble was about three feet. Now, he'll turn towards sounds or voices six plus feet away! I don't know if it's that the right ear is just taking off, or if it's the help of the left ear, but we're amazed! We are so happy we went with bilateral CIs!

      Now we're good to go for a month! It'll be nice not having to drive up to the hospital for mappings every week or two. When we go again in the beginning of June, Aiden will go in the soundbooth and we'll make any mapping adjustments as necessary at that time.