Recap!

I already posted about Christian's language explosion when we were on our beach trip last week with my family. I have to say, hearing my little guy tell me he wants to go to the beach, or asking where the moon is, was just amazing. It got me thinking back to our last family vacation, which was this time last year. At the time, we didn't know the status of Christian's hearing. We knew he couldn't hear some things, but we certainly didn't expect his loss to be so severe. He wasn't even aided.

It's mind-boggling how fast a year has gone. Last year, he wasn't even crawling. I was still nursing my sweet boy, and he was napping 3 times a day. This year, he was running across the beach, drinking juice boxes, and we were lucky if he napped for an hour in the afternoon. We quickly learned that a beach vacation with a toddler is not a "vacation". It's a zoo.

Our trip was absolutely fantastic. A week with my Mom, Dad, Brother, Sister-in-Law, and my hubby and kid was just what I needed. Christian was spoiled rotten by his Nana and Papa. His Aunt Sarah and Uncle Nick tickled, played, and sang with him. We built sand castles during the day, and hung out with each other at night. For those of you who don't know about Dewey, check out this Wikipedia article ve (yes, we are a Dewey couple...it does happen). Some of our greatest memories were made at that beach with our housemates from our group house, and we made some really beautiful ones this past week with our family.

I have to say, one of the most memorable moments was running into our CI audiologist from Hopkins while we were down there. We were able to buy her a drink to thank her for all of her hard work with our sweet boy, and toast to his success. Here I was worried what we would do if something went wrong with his CI, and our audi was down there. How cool?!

Chuck and I were beyond nervous about having Christian wear his CI on the beach. After a couple of days, we loosened up a bit, and just hoped that his hat protected the processor from the sand, and we clipped his controller of his Babyworn to the inside of his shirt. He never went in the ocean with it on...we're just not quite ready to waterproof our CI using a baggie or a Foodsaver bag yet. I don't think if we ever will be!

Check out this little video montage I put together, and be sure to watch for the scene of Christian dancing to the reggae band....I never thought I would see the day my profoundly deaf son would dance to music. What a miracle!
(Stop the music on the right before you start the video)

Make video montages at www.OneTrueMedia.com

25dbs BABY!

Today we had Christian's 4th mapping at Hopkins and we were SO thrilled when he had consistent repeatable responses at 25db-ACROSS ALL FREQUENCIES. Check out the Speech Banana so you can get an idea of where he is hearing now. Even though his aids amplified him up to 45db, he never had access to sounds higher than 750hz. With his implant, Christian now has access to almost all of the SPEECH SOUNDS. This technology truly is a miracle.

His map was adjusted and turned up a bit more, and we have 4 new programs to try. Christian is constantly amazing us with how fabulous he is doing with his implant, and we can't wait to see what these new programs can do for him. We haven't started our official aural rehabilitation through Hopkins yet due to some scheduling conflicts there on their time (although we are going to speak with a SLP tomorrow about getting things scheduled), but we have been working around the clock with Christian on his listening and speaking skills. My Event Planning skills are definitely getting rusty, but I am sure that I can give some of the SLPs a run for their money these days! It seems like everyday he has a new word or sound. His new favorite words are Ketchup and Hot Dog. Such a boy.

Sitting by the phone...

So, our audiogram went as expected today. 45db average responses AIDED, with a steep drop-off in the high frequencies. Our audi at Hopkins told us that they will call us with several surgery dates within the next week. Needless to say, I'm on pins and needles waiting for this call.

Love Letter

I spent much of this morning trying to focus on my work, while Christian played with our sweet sitter Arina. It was a bit chaotic, as our new cleaning lady was here as well. Despite the craziness, it helped having alot going on in the house while I waited. And waited.

Then, at 12:30pm, I got an email from our audiologist. The email started explaining how they wanted to do one more audiogram on Christian, because the last one that we had at Hopkins showed worse responses than what we got from our private audiologists. She then explained a bit more about what they wanted us to do about high frequency access for him.

Then it said "And you can expect an early summer surgery date".

Whoa. Did that just happen?

After calling my husband, frantically trying to reach my Mom, emailing another Mommy of a CI kiddo, emailing my EI team, and talking out the email over Gmail chat with one of my best girlfriends, I decided I needed to write our Hopkins audiologist back. I asked her to clarify a couple of things. I asked her to confirm that they did indeed, see Christian as a candidate in his right ear. (By the way, this all happened in like 10 minutes).

She wrote me back.

THEY DO SEE HIM AS A CANDIDATE. We'll probably have a surgery date after this next audiogram.

So, after a little bit of crying, a little bit shock, and a little bit more anxiety, I sat down and let it all sink in.

During all of this, being the multitasker that I am, I was opening mail. I received a letter from the Archdiocese, and when I opened it, one single ticket to the Holy Father's mass fell out. It was a complete surprise. While I have been eagerly anticipating Pope Benedict XVI's visit here to DC, I wasn't able to secure tickets to the Mass.

A chill immediately fell over me, and tears ran down my face. I knew that there was a reason that I received the news about Christian at the same time that I received the letter with the Papal Mass ticket. I truly believe that this was God's way of telling me "I've been listening to you. I hear your prayers. I will take care of you and your family. And I will give you an answer". This was a very treasured, very beautiful, love letter from God.

Pass the Tums please...

I woke up this morning with the most horrible heartburn and just flat out anxiety. My usual cup of coffee that gets me going just amped me up even more. I am not quite freaking out, but just having alot of what I like to call "nervous tummy".

Today is the day that the CI Candidacy Team at Hopkins will be meeting about my little man, discussing the possibility of implanting him. I know that meeting is around lunchtime, but I'm not quite sure when they will notify us of the decision. This whole process has been so emotionally trying on me. I thought the initial shock and grief surrounding our initial diagnosis was tough, however the candidacy process for me has been worse. I can't even explain it.

So, here I am. Waiting. Praying.

All I can say is Ugh.

Ugh. That's how I feel right now. I am tired. I am drained. I am feeling a bit of burnout at the moment. Today was a very busy day, in the middle of a very busy, very annoying week. I really....really....REALLY need a break.

We finally were able to get Christian's FM system hooked up today via our private audiologist. Despite the added length to the aids, he seems to be adjusting to it well 2 minutes into me wearing the microphone, Christian decides he needs to grab it, and breaks the clip. Fantastic. I have rigged it with a hair clip and hair tie while I am Googling searching for another clip. If anyone knows where to get new Phonak microphone clips, please let me know!

We plan on using the system in noisy situations, like playgroup, class at Imagination Stage, the car, and the grocery store.



It was yet another day of shuffling the monkey around from doctor to doctor. After the audiologist this morning, we came home for a couple of hours to play and have lunch. We then were back up to Hopkins for a mid-afternoon appointment. Today we had our Auditory Skills Assessment. This was the first appointment that we had in this entire process that I left feeling unsure and not confident at all. I have great respect for the teacher we met with today--I just think that it is impossible to get to know my son in one hour. She mentioned to me that she wants us to continue to work on high-frequency sounds with him. I'm just not sure what else I can do, or what my Early Intervention can do. I feel like I know Christian better than anyone, and I truly feel that he is giving us all that he can. I know as his Mom, I certainly am.

So, ugh. We have to go BACK up to Hopkins bright and early tomorrow morning for our Psychological Evaluation---our last appointment in the candidacy process. The team up there will then meet next Tuesday to discuss Christian, and recommend our next steps. I just want an answer. I am really looking forward to our EI appointment tomorrow afternoon (yes, another day with two appointments) so I can chat with our teacher about all of this. Miss M, is amazing. She has a hearing loss herself, and is a Mommy. I feel like she just gets Christian, and our family. I feel so fortunate to have such an amazing EI team on our side. Every single person in Montgomery County Infants and Toddlers has always jumped leaps and bounds for my son. They make our hard times just a bit easier. I'll take anything that is easier these days, since everything seems to be difficult for us.

A little bit more time up in B'more.

I just glanced in my planner, and it looks like we have another crazy week of doctors appointments planned.

We're headed to our audiologist Wednesday morning to get Christian's aids program to function properly with the FM System. That afternoon we have an Auditory Skills test at Hopkins. Thursday morning, we get to head back to Hopkins at 9am for our Psychological Evaluation. In between all of this, we have our Early Intervention weekly appointment and our ASL class.

It's weeks like this where I am so thankful for my "Tina Time". People always ask me "How do you keep it together going through all of this?". I FIRMLY believe that all Moms, regardless of what you are going through with your kids, need time to focus on themselves. I think my "Tina Time" makes me a better Mom and Wife. Maybe it's just a manicure here and there. Or meeting up with my girlfriends for Happy Hour. Or even designating one night during the week to scrapbook (MY OBSESSION). My time keeps me sane. Chuck has always supported me having my time, and always tries to help me find that time in our week. I try to do the same, working around HIS time (he much prefers softball and basketball over manicures and pedicures).

I know at some point, things WILL slow down, and won't be as crazy as they are now. Until then, I'll look forward to my glasses of Pinot, my crop-dates, and my mani-pedis.

One Step Closer

We spent all day yesterday at Hopkins, meeting with the CI surgeon and the audiologist. We learned that Christian's CT scan came back completely normal, showing that his cochleas are formed correctly. Our surgeon walked us through his CT scan, the surgery, and the risks. We actually signed the medical consent form for the surgery yesterday--something that I didn't expect to happen, but our surgeon wanted to get that taken care of. I was surprised, but glad that we got that taken care of so we can be prepared.

I was even more surprised to actually chose the brand and style of Christian's CI yesterday. I knew that day was coming, but just didn't expect it to happen yesterday. I've done an extensive amount of research, reading everything I could get my hands on, researching failure rates, and talking with parents of children with the two brands we were considering. I have never experienced something like this before, and the pressure was immeasurable. In the end, it came down to what was best for Christian and our family. We decided to go with the Nucleus Freedom.

You would think after signing the consent forms and even picking out the implant that we would be formally approved as candidates--well, not exactly. We still have to go through the Psychological Evaluation and the Auditory Skills Assessment next week. The entire team at Hopkins will meet, and then inform us of their decision. So, we still have about 2 weeks to go in this process. We did learn that if/when we are formally approved, we are looking at surgery date as early as May.

Wow.

In the meantime, we're still trucking along. Christian is getting fitted with his FM system today (YEAH!). It will be amazing to see how he does with it.

An Update from Grumpyland

Christian did fantastic today---he is SUCH an incredible patient. I have to give the kid props :)

I had a hard time getting out of bed this morning. I was out late with some of my girlfriends from the neighborhood, and didn't even go to bed until 11:30pm. We had to wake Christian up at 6:10, therefore ruling out any possibility of him even having the thawed Mommy Milk that I had for him. He was ok in the car, but started his chorus of "Baa Baaa" and vigorously signing "Milk" just when we hopped onto 95.

By the time we got to Hopkins, and navigated the massive campus to the pediatric neuro-radiology department, he was definitely hungry. I know how I feel when I am starving---I get cranky and snap at everyone. Christian definitely takes after me, as he was just a handful and kept signing "Milk" and "Eat". Poor kid. He probably thought we forgot about him.

The sedation was done by oral cholryl-hydrate, which definitely didn't taste good as it made him gag and freak out. You would think they would flavor it for these kids! After a bit of coaxing, rocking, and swaying, the monkey passed out and was taken away for the scan.

I peaked my head into the scan room just as they were starting the test. They had him wrapped up in a little bundle, and placed him in the massive machine. Even though he is such a big boy, he looked so small laying there. The nurse asked me to leave as soon as my eyes welled up. Of course, I cried---thank goodness Chuck is level headed and strong, or I think I would've shed a lot more tears than I did.

The test only took 10 minutes, and he was slowly coaxed awake by rubbing a wet washcloth on his face. He looked like a little drunk baby, with his head bobbing and swaying and his eyes opening and closing. He perked up when he was allowed to suck down 10 oz of his "Ba", the first thing in his tummy since 6:30pm last night. POOR KID!

So, the little hungover guy is home, resting and wobbling today. He's slept on and off, and he is recovering well. I'm glad we were able to get this test done so fast, and that he did so well with it. Here's hoping we won't have to sedate him again until if/when he gets his CI.

Getting Ready for a Grumpy Day tomorrow

We have to be at Hopkins by 7:45am tomorrow for Christian's CT Scan. This is just one of the many prerequisite appointments and tests that we have to take part in during the CI Candidacy Process.

I'm not really worried about the actual test--for those of you who know my kid, he's pretty easy, and is used to people poking and proding him. He's going to be sedated, which is always tough to see--but again, for those of you who know my kid, he's also VERY active.

I think the hardest part of the whole process tomorrow (other than me having to get out of bed before 7:00am), is not being able to give Christian his morning bottle. He's not allowed to have any solids or milk after midnight tonight.This will be his 3rd time being sedated, but our first since he's stopped nursing. For whatever reason, breast milk is allowed prior to sedation. A very nice nurse who called me this afternoon to give me this news recommended that perhaps I wake up and give him WATER or APPLE JUICE before 6am. OH GOD. I am SO not a morning person first of all. 6am! And my little Pooh Bear will turn into a Grumpy Eeyore if I try to pull that on him. Seriously....APPLE JUICE?

There is nothing that little man wants more than his AM milk. Chuck and I don't set an alarm anymore. We rely on the calls of "BA BA BA BA BA" coming from the nursery between 6:45am-7:30am every morning. He sucks down 10 oz of milk faster than any kid I've met.

So, I'm contemplating hitting the freezer stash I have of frozen breast milk and using that instead. Buddy hasn't had the good stuff in quite some time, but God knows I made enough of it for 3 babies and still have a pretty good stash built up.

Thank goodness we like B'more, HON...

Yesterday's appointment at Hopkins went well, and I didn't have an anxiety attack or puke all over the waiting room from nervous tummy either. The most traumatic part of the day was that Christian didn't get an afternoon nap...at all. Being the nap nazi that I am, that's a very rare occurance!

Our appointment was the official consult regarding the Cochlear Implant candidacy process and program at Johns Hopkins. We met with one of the top CI audis, who actually wrote the chapter on CIs in Choices in Deafness (it's like our What to Expect When You Have a Deaf Kid). We were told prior to the appointment that she was going to do some audiograms on him, but that didn't end up happening. She gave us about an hour long consult about the CI itselt, surgery, expectations, and rehab. We also discussed timing and that they will do the surgery before he is 18 months old (so in the next 5 months).

We ended up leaving the consult with 6 appointments scheduled all between March 13th and April 3rd. AND ALL UP IN BALTIMORE. He'll have a CT scan, a SLP consult, a meeting with a CI surgeon and ENT to discuss the CT scan, audiological testing, auditory skills assessment, and a pyschological eval for us.

Basically, we still don't know if he's a candidate or not, but we're on the road to that answer, and we're speeding along. We'll be busy shuttling back and forth to Baltimore, researching CI companies, talking with families that decided to (and to those who did not decide) to implant, and just taking this whole process in.

On a funny side note, we did end up meeting the secretary that I spoke with everyday for 45 days straight trying to schedule Christian's first ABR. As most parents of D/HOH kids in the DC area know, these ABRs have long wait lists, and it's just flat out impossible to get an expedited appointment. So, I did what any rational proactive parent would do: I called everyday, and even used fake names to get through to her. I always knew that she thought I was a nut, but she confirmed it in person to me. In fact, when I spelled out my last name to her, she looked up with a shocked and perplexed look and said "I know you. You are that CRAZY Mom who called everyday. You're SO nice in person. I didn't think you would look like that all. You look like a little BARBIE DOLL".

Yeah, I think it's safe to say that Barbie didn't have to deal with half the sh*t that I have had to deal with this past year.

Hopkins and Hoping

So, we took the plunge. After MUCH discussion with our Early Intervention team and audiologists, some prayer, and LOTS of anxiety, we made the call and got an appointment in a couple of weeks for a consult at The Listening Center at Johns Hopkins. Hopkins is one of the best Cochlear Implant hospitals in the country. Our consult is just the beginning of this next turn in our journey, and who knows where it will take us. We're not even sure if Christian would be considered a candidate.

Once again, we're waiting and trying to be patient.