Monday, December 8, 2014

developmental update

Alex graduated from individual speech therapy on October 24th. (I’m a bit behind)  Alex had a language explosion over the course of just a few weeks.  It was amazing to watch our little man gain confidence almost overnight.  We were at an individual speech session and Alex was playing with a train and said to the speech therapist, “The train went over the bridge.” and the speech therapist looked at me and went, “Yep.  I think we are done here.”  It was a great moment.  I’ve never been more proud of my little boy.  The boys are still enrolled in preschool through our state program 4 days a week.  We recently had a large meeting at school with all the school therapists (speech, occupational, physical) and with their teachers and both boys got simply AMAZING reports.  We cannot begin to thank the school for all the hard work this school has put in to getting our boys on track developmentally and at no cost to ourselves.  Both boys can now repeat their ABCs, they know their basic colors, and they can both count to 12.  They also have the puzzle skills of 5 year olds.  I would have never imagined just 6 months ago that they boys would be on track developmentally.  The school is still working on some minor sensory issues with Alex but we don’t expect the boys to need services once they reach the age of 3.  It’s bittersweet.  We absolutely adore the school and all the teachers who work tirelessly to educate these little minds.  I’ve never seen a group of people with more belief in the abilities of every child no matter what challenges a child might face on a daily basis.  We have a meeting scheduled in January to begin the transition process from the program.  A representative from our local school district will officially evaluate the boys to determine if they will continue to qualify for services offered by our school district.  We would be shocked if they did qualify.  So then the teachers will help us to determine the best course of action for the boys.  We absolutely want them in a multi-day preschool program next year.  We will do whatever it takes to make this happen.  We might actually enroll the boys as “peers” at the same school they go to now.  We would have to pay but the cost is very, very reasonable.  They are comfortable at the school and Kara and I love the structure of the school.  Plus there is something to be said for all they are learning in terms of interacting with peers their age that have a wide range of developmental abilities.  We think this will help them when it comes time to start kindergarten.  But in terms of speech development both boys can now repeat anything that you say to them.  They talk in 6 – 8 word sentences on a regular basis and can fully communicate their needs to us using verbal language (though both boys regularly still use sign language too).  We will keep an eye on any pronunciation issues that might start to appear as the boys age closer to the typical preschool age.  We would not hesitate to go back to individual speech therapy should the boys have any pronunciation issues.  So that is a quick (much overdue) update.  I promise to be back soon with an even better update.  There are some many things I need to get down on paper so that the memories don’t vanish from my brain.  
Mary

Sunday, November 2, 2014

halloween

We didn’t actually make it out to Trick-or-Treat this year.

I did manage to snap a photo of Jakob at a Halloween party we went to over the weekend.  Where’s Waldo?


 But otherwise the boys were just not into keeping a costume on at all.  So we just decided to stay at home.

Grandma and Grandpa came over to join in our fun.  However, I made the mistake of telling the boys that Grandma and Grandpa would be over after nap.  The boys get up from nap at 3pm.  Grandma and Grandpa were not coming over until 5:30pm.  Do we see where this is going?  So needless to say when the boys woke-up from nap and immediately ran to the front door I knew we might be in for a long afternoon.  Kara and I had plans to run to the grocery store after nap but that got shot down real quick with Mr. Jakob standing at the door going, “No store.  I stay here.  Grandma.  Grandpa. Pizza.”  So we just decided to sit at home and wait for Grandma and Grandpa.  We used our free time to practice passing out candy to the trick-or-treaters.  We gave each boy a pumpkin filled with candy.  And within a couple of minutes they had the task down solid.  They were ready to pass out candy.  That was until we got our first trick-or-treater of the night.  Alex carefully watched the semi-little kid approach our front door.  But as the kid neared our door Alex placed his pumpkin on the ground and hightailed it for the playroom.  I think he was calling it a night.  Alex spent the remainder of the evening in the playroom with Grandpa trying to convince all us to make the kids stop coming to the door.  Jakob on the other hand once again acted as our family ambassador.  The kid took his job seriously!  He would come running to the door each time we got a trick-or-treater and carefully place a single piece of candy in their bag.  And of course he would always yell “BYE” as they turned to walk away.  Jakob had a blast and really only got scared a couple of times.  But even after a quick scare Jakob would return right back to his job.  Alex on the other hand decided to spend time showing Grandma his new Thomas the Train potty.

Isn’t this how every kid spends Halloween?


Now we just got to teach Alex that you have to actually pee on the potty and not just read the special potty books.

Overall it was a very memorable Halloween.

Mary

Saturday, November 1, 2014

family pictures 2014

All credit goes to our fabulous photographer.

The family.  This picture was the very last one to be taken that day and it so perfectly captures all our personalities.  It is also scary how much Alex is a reflection of me and how much Jakob is a reflection of Kara.  This picture was worth the entire day of chasing grumpy kids around the park.  And note - Jakob's reaction is a result of learning that he could have ice cream for lunch.


 Our life with toddlers.  Negotiations.


The boys.  This was one of the first pictures to be taken that day.  And the boys were being angels.  We quickly learned that both Jakob and Alex thought that the promise of a visit to the playground after we finished taking pictures was being translated as "If you take one picture, then we get to go the playground."  So that's why this was the best picture we got of the boys together all day.  They thought after this picture we were headed to the playground.


Alex.  The photographer got some great pictures of Alex while Kara and I were off calming down Jakob who was having a major meltdown over the delayed trip to the playground.  This is again a perfect capture of his personality.


Jakob. This picture was taken at the playground.  Pure Bliss. 


Mary

Tuesday, October 14, 2014

what's going on?

Some random updates.

They boys love to play outside with the neighborhood kids.  We can’t even drive down our street without Alex going, “Landon home?” in hopes that he can play outside with our little neighbor boy.  I’m going to be extremely disappointed with the arrival of winter temperatures.  Our neighborhood is full of kids and several of the kids are under the age 5 and they are mostly all boys.  My neighbor is pregnant with baby #3 and I keep insisting that “our neighborhood really needs a girl”.  The kids typically play outside from about 4:30pm – 6pm every night.  They love to chase each other with their swords.  They wrestle each other to the ground.  They dig in the dirt.  They play in the rock pile under our swing set.  The play in the neighbors sand box.  They would play with the hose and the water table when it was really hot outside.  They swing on our swing set.  They love to race each other in their “cars” down our driveway that has a fairly decent incline.  They will race each other in their “cars” down our street (we live on a court and I am always supervising when they are in the street).  My favorite is when they count off to start the race it usually goes something like, “1, 2, 3, 5, 7, 10, GO!”  They love to run to the neighbors house and explore the toys in their garage.  It’s just a great time all around.  And I just love to see kids playing outside too.

The boys are also starting to get really good at independent play.  Of course it is hit or miss on some occasions but there are long stretches of time where the boys will just occupy themselves in the play room.  This is definitely something new for us.  And it is quite enjoyable.  They are also playing more and more with each other.  They definitely act like brothers in the aspect that they either love to spend time together or they hate to spend time together.  And to be honest it is mostly Alex that reaches a limit on certain days.  And on those days you will hear “No Jake.  No Jake. No Jake.” over a bazillion times.  Jakob has such a sweet heart that he usually obliges to Alex’s demands and will go elsewhere to play but on certain occasions Jake will have reached his limit and will give Alex a nice bite (typically on the butt).  Oh boys.  

Both boys love to color.  They don’t quite grasp the concept of finishing a picture but they love to flip to a page scribble a bit and then flip to another page and scribble some more.  They also love to have Momma and Mommy color alongside them.  I also love it because Alex can’t quite grasp the difference between “draw” and “color” so Alex is always “drawing a picture”.  There are occasions where the crayons end up on items other than their coloring books.  I think because the window, the wall, the table, the trashcan, the play set, and the blocks all appeared to be missing something according to the boys.  But I guess that’s why they invented magic erasers!  

I was trying to teach Alex the difference between “I” and “my” last weekend.  He was outside dropping his toy cars into the bushes.  I outlined the conversation.  But let’s just say I’m going to embrace the fact that Alex is talking these days and leave pronoun conversations to the experts!

A: “My drop car.”
Me: “Good job.  But you actually mean ‘I drop the car’”
A: “No. My drop car.”
Me: “I drop the car.”
A: “No Momma.  Alex drop car.”
Me: “Yes I know.  That’s why you should say ‘I drop the car’ instead of ‘My drop the car’”
A: (looks at me like I’m a crazy lady) “NO! NO! NO! My done.”
Me: “You mean ‘I’m done’”
A: (walks off)

The boys are doing great in school.  We have had some bumps with the drop off process but Kara has now mastered the drop and run tactic.  And the teachers have done a good job in making sure there is a special toy or project for Alex each day during drop off time.  This captures his attention and then he doesn’t notice Kara leaving the room.  Kara then spends pick-up time visiting with the teachers.  This seems to work out better.  We still cannot say enough about the services being provided to the boys at school.  We are simply blown away by their development over the past several weeks.  Alex has had a language explosion and he can now repeat just about any word thrown in his direction.  We are still working on Alex initiating conversation himself but even this is getting much better.  I love to sit and listen to the boys talk to each other.  We ask the boys who their best friends are at school and Jakob always repeats “Mason” and Alex always repeats “Grace” and it absolutely melts my heart.  We have been told by their teachers that Alex, Jakob and Mason are the instigators at school.  I don’t think this is a good thing.  Haha.  They teachers have already had to have a conversation with the boys about when it is the “appropriate time to rough house”.  Sigh.  I foresee many trips to the principal’s office over the years.

The boys also love electronics.  We are doing our best to keep it at a minimum but they are obsessed with anything that turns on and off.  We will admit to using our iPhones while we are in a public place.  It is seriously the only thing that keeps Alex calm and rational during a shopping trip.  That boy is simply amazing with our phones.  It’s like he came out of the womb knowing how to operate an iPhone.  The boys also get to watch one video before story time each night.  I let them each pick a video of their choice but right now the only videos in rotation are “The Wheels on the Bus” (Jakob) and “Bob the Train – Transportation” (Alex).  I’m still waiting for them to change it up one night.  They do get to watch television during the day.  We watch it for about 30 minutes in the morning while the boys eat breakfast.  It is the only way they will eat breakfast and allow Kara and I to get ready for the day.  They have a rule that they must finish their breakfast before they can drink their milk.  And that seems to be working.  The boys always eat breakfast now.  I wish I could say we fix them super healthy breakfast foods but we do not.  Our rotations are between pancakes, waffles, and pop tarts (rare).  They also get to watch television when we come in from outside each night.  This allows me time to make dinner in peace.  They have a lot of favorite shows at the moment but they tend to rotate between Bob the Builder, Caillou, Daniel Tiger’s Neighborhood, Thomas the Train, Mater’s Tall Tales, Curious George, Mighty Machines, and Handy Manny.  The boys also eat lunch most days at preschool but according to their teacher our boys don’t actually eat all that much but they instead drink their milk.  That sounds familiar.  I have never met two kids so obsessed with milk.  The teacher at school even commented on how excited they get at lunch all because they get to drink milk.  So on most days Kara tends to do a mini lunch before nap time or a snack in the car if they get out of school super grumpy.

They boys are definitely in the midst of the “terrible twos” and can switch between a “world is ending” meltdown and “angel” toddler in a matter of minutes.  I often find myself just shaking my head at the end of a temper tantrum.  We have been those parents dragging their screaming children from our local grocery establishment.  That would be us.  It’s actually nice that Kara has preschool time to run errands now so that keeps things we need to do at a minimum during the weekend.  We instead just try to have fun as a family (which can also be rather hit or miss).  The boys tend to get a bit crazy when both Momma and Mommy are home.  They know there are two of us around and so someone is always able to be paying attention.  There are also certain things the boys do just to drive us crazy.  Jakob loves to tear up books.  We can put him in timeout a bazillion times.  I can yell at him until I’m red in the face.  But the little man will just look me straight in the eye and tear up a book.  The brain of a two-year-old!

Mary

Friday, October 10, 2014

recovery

It’s been an interesting couple of weeks.  I’ve cycled through a lot of emotions.  The immediate recovery period was fairly straightforward.  The recovery from the actual surgery was fairly straightforward and outside of some minor annoyances I have zero room to complain.  Of course I grew tired of not being able to “truly” wash my hair.  I got tired of not being able to sleep in a comfortable position.  I got tired of taking medications.  I got tired of an itchy ear.  I got tired of not being able to pick up the boys.  I got tired of the lasting “sluggish” effects from the anesthesia.  I also had some side effects from the antibiotics and steroids which have actually proven to be more an annoyance than anything related to the healing of my ear.  But in the grand scheme of things all of these are annoyances are really no big deal.  To be honest my recovery has been more of an emotional recovery than a physical recovery.  I keep trying to describe my emotions to the people around me and to be honest I don’t think a single person has grasped my experiences the last couple of weeks.  And that’s okay.  We all have our own personal experiences that are truly unique to only ourselves.  I’m okay with that.  But I long to have someone to talk to about this new world because I have definitely found myself in a completely new world.  I am trying to enjoy each “hearing” moment but then I find myself panicking and pushing the experience aside for fear that in a single moment my new sounds will disappear.  I’m not sure why I’m so terrified of something going wrong.  But it’s probably because I got so close to not being able to function in a hearing world that I have an idea of how tough life would be should my hearing disappear altogether.  I also went for a long time, possibly years, without being able to adequately hear the sounds around me.  So in a nutshell I’m a bit terrified of the future.  I’m also excited.  I am perhaps a bit impatient to see if there is a possibility of fixing my other ear.  This taste of the new world has filled me with a bit of greed and I find myself wondering what possibilities exist in a world where I can hear without any problems.  But then I also find myself dreading the idea of doing this all again.  I simply long for an outcome.  It’s also an outcome that cannot be guaranteed.  I know that just because the surgery seems to have greatly improved my hearing in my left ear it does not mean that surgery would have the same outcome with my right ear.  So where does this all leave me at the moment?  I am taking it day by day and trying to get back to my “normal” life.  I went for my follow-up appointment with the surgeon and all appears just fine in the healing process.  They did a quick hearing test and while the audiologist would not provide me with specific results I managed to get her to say, “things look much better”.  But then again I could have told you that too.  I know I can hear.  I actually know that I can hear much better.  I just refuse to announce it to the entire world.  I will go back to the audiologist in a few months for another hearing test.  The world around me is simply amazing at the moment.  And I am extremely grateful.  I am grateful to the amazing surgeon who took on the task of fixing my ear.  To be honest I’m not sure I could ever appropriately communicate my gratitude.  And then I am grateful for so many special moments I have experienced over the last couple of weeks.  I was putting the boys to bed last night and it was our normal cuddle time after baths.  The boys each get to pick one video to watch on my phone before we do story time each night.  And while we were watching “The Wheels On The Bus” (the only video that exists according to Jakob) I got a spontaneous hug from Mr. Alex.  But then something amazing happened when I heard the words “wuf you mama” in my ear.  Alex mumbled them in a fleeting moment and he mumbled them into my left ear.  I heard those words.  And had it been only a couple of weeks ago I would have never heard them spoken to me.  I would have missed this moment.  And for that I am extremely grateful.  My heart exploded into a million pieces and the tears streamed down my face.  That moment, like so many others, was a blessing.  So I think that is all I will talk on this subject for now.  I will let the world know when I decide to embark on the next surgery.  I promise to get this blog back to its original intent very soon.  You all deserve a much needed update on our wonderful (and simply amazing) boys!

Mary

Monday, September 29, 2014

surgery

WARNING:  This post does include some pictures!

I got a bit silent on this topic but I had stapedectomy surgery on my left ear this past week.  Kara and I met with the surgeon over a month ago and were thrilled to learn that I was a candidate for a stapedectomy on both my left ear and on my right ear.  The surgeon is extremely optimistic that the surgery will be extremely successful on both my ears.  Kara and I discussed the matter in length and we decided, based on several factors, that surgery is the best route for us at the moment.  We would begin with trying to fix my left ear and then reevaluate things at a later date to see if I would also get the operation on my right ear.  So fast forward to today and I'm in the recovery period from stapedectomy operation #1.

It was an outpatient surgery.  The surgery itself was very straightforward but it was a stressful several weeks leading up to the surgery date.  I was paranoid about getting sick and with toddlers around the house someone is always sick.  Plus there was just so many unknowns about what to expect from surgery.  I also loathe hospitals and the only other "surgery" I've ever had done is getting my wisdom teeth taken out and at least that's done in a doctor's office.  So needless to say my anxiety was a bit high.

The surgery was done at the same hospital where I delivered the boys.  But the hospital has been completely remodeled since they were born so it actually felt like we were in a totally new place.  The surgery center was absolutely beautiful.  We have never had a bad experience at this hospital and that continued through this visit too.  I was scheduled to arrive at 8:15am and my surgery was scheduled for 10:15am.  So of course that means a lot of anxiety filled waiting for surgery.  We got a parking spot right in front of the building and I was of course worried that our lucky streak would end with that parking spot.  I'm such a negative person.  We got all registered for the day and then I just waited to be called back to the pre-op area.  The waiting room was jammed full of people.  They gave Kara a pamphlet with my "ID" # and it corresponded to a description on this television screen that would tell Kara where I was at any given time.  A nurse finally came out to get me.  Of course before I could begin this grand adventure I had to prove I wasn't pregnant.  They wouldn't even give me a gown to change into until I did this!  Thankfully I was not pregnant.  Sigh.  And then I got shown to my pre-op room which was room #12!  I took that as a very good sign.  I got all changed into a gown that was 500 sizes too big and then the nurse came in and did all the pre-op stuff.  They did my blood pressure, an EKG, and my took pulse.  Of course my heart was racing away quite fast.  A bit nervous!  The nurse then asked me the standard bazillion questions and then got my IV started.  They actually put the IV in my right hand.  I thought it would be painful but the nurse was absolutely wonderful.  They started me on IV antibiotics and then just IV fluids.  Once we got all that done they let Kara come back and wait with me.  We had about 45 minutes until surgery.  It was a long 45 minutes.  I watched the clock and asked the nurse to pee about 15 minutes before surgery (thanks to a nervous stomach and IV fluids).  That was good timing.  As soon as I got back my surgeon came in to mark my ear and make sure I understood the entire process.  It was weird because those were the only 3 minutes I would actually see my surgeon the entire day.  Kara and I knew that things would start to move fast after that point so we went ahead and gave our kisses to each other.  And in the end Kara just kind of left the room without me ever knowing it and it helped my nerves tremendously.  It normalized everything for me and I didn't need to actually say good-bye.  All of you that know me know that I NEVER say good-bye.  The anesthesiologist popped into the room next to visit with Kara and me.  I'm not sure why it never dawned on me until this point, probably because I've never really had an actual surgery and I clueless as to procedures, but I was going to need a breathing tube for this surgery.  Needless to say this conversation with the anesthesiologist started me on a nail biting path for the reminder of my awake time.  The anesthesiologist assured me that he would do everything in his powers to keep me as relaxed as possible.  It was at this point that I learned that nausea was going to be my biggest enemy post surgery.  I think this is common with general anesthesia plus I was having an operation on my ear.  The anesthesiologist told me that a magic pill would be given to me immediately before surgery and it should help with the nausea for up to 48 hours.  I proceeded to spill water all over myself when given this magic pill like 5 minute later.  I think I got excited that I was actually allowed to have some water.  Anyway ... off topic ... I would also be given phenergan after the operation as I needed it.  The anesthesiologist left the room and within minutes the operating room nurses came in to get me.  They quickly introduced themselves and asked some basic questions.  I passed the test and off we went on our grand adventure.  And of course things start to get a bit blurry.  I had been wearing my glasses and I am blind without them so I begged the nurse to let me keep them on as long as possible.  I managed to keep them on until about 2 minutes prior to getting knocked out.  The nurse even got scolded by a surgical tech when we entered the room with a "Why does she have glasses on?"  I was wheeled down to operating room #3.  I finally learned why hospitals have so many heated blankets too.  They keep operating rooms at like negative 32 degrees.  I will admit is was a bit unnerving to be wheeled into an operating room when you are the patient.  These people were going to be "cutting" me open in just a minute and I wouldn't be aware of a single moment of it.  I think there were a total of 7 people in my operating room.  There could have been more but I only was witness to seven people.  The nurses got me over to the operating table and then started to literally strap me down.  This is when the panic started to take over a bit.  I was doing okay until my legs and arms were strapped down.  The anesthesiologist started to talk to me about my vision, or lack of, and the anesthesiologist nurse also started to ask me several questions "Why are you here?" "Who came with you today?"  "How old are you?"  "What is today's date?".  I finally learned the reason for the questions when the anesthesiologist said, "I don't think we gave her enough versed."  I think I was suppose to be a bit more out of it.  Oh well.  It was fine.  Someone took my glasses at this point and then I saw a mask with the magic gas appear close to my face.  I knew I'd be out any minute.  I saw my anesthesiologist push some white stuff through my IV and the nurse said, "You will be asleep in like 10 seconds.  We will take good care of you." I literally was at peace (probably the drugs) and I just decided to close my eyes.  And that was all she wrote!

The surgery went just fine.  No complications.  And that was our greatest relief.  The operation was scheduled to last for one hour but it lasted for just over two hours.  Kara and I still aren't exactly sure why the surgery took longer than we anticipated but based on the feedback from the surgeon we just have a super awesome surgeon who was taking his time with the operation.  The surgeon gave us about 30 color photographs of the entire operation which is really educational  It documents the whole procedure.

This is a picture after the surgeon lifted my eardrum to get to my middle ear.


This is after the removal of the stapes bone via a laser.  It is also after an opening was made through the footplate which separates the middle ear and the inner ear.  The surgeon took some tissue from behind my ear and laid it over the newly created opening in the footplate.


This is after the prosthesis was placed over the incus bone.  The only other thing to do is lay the eardrum back down.


Those few pictures make the surgery look really easy!!

I do know that Kara was a bit nervous waiting to meet with the surgeon.  I would rather be the patient any day.  I think I would have crumbled to a million pieces had I been waiting for Kara to get out of a surgery that took much longer than anticipated.  But thankfully Kara is a much more relaxed person!

I remember very little of my time in the recovery room and in the surgical discharge area.  And I was actually in recovery a fairly long time at about 4 hours.  I was asleep through most of it.  I have never been so tired in my entire life.  Those are some serious drugs.  I was confused when I first woke-up in the recovery room.  I immediately thought It was time to get up and wake the boys up but I got a "nice" push down from a nurse and I realized that not only was I in the recovery room but I was having an annoying coughing fit.  I was also having a lot of trouble catching my breath.  I think these are all normal side effects of waking up from anesthesia.  But in the midst of the coughing fit the nurse asked me, "Did you have a cough before surgery?" I realized that I could hear the nurse talking to me.  But you all she was standing on my left side.  I have not heard someone speaking to me on my left side in a couple of years. So I got a giggle from the nurse when I answered her question with, "I can %^&&% hear you." because I was filled with so much stinking euphoria.  I could have been dying at that moment and I wouldn't have cared about it.  I could FREAKING hear.  That moment is the clearest of my entire recovery period.  The nurses managed to get my heart rate down.  It was really fast.  I think it was probably triggered from the coughing.  They gave me some oxygen and within minutes I was fast asleep.  And after that I only have snippets of the rest of the afternoon.

I remember looking at the clock at one point.  It was 1:30 pm.
I remember watching another guy get wheeled by my bed and I thought to myself, "He looks like crap."
I remember them pulling a chair up to my bed and telling me I would need to get up and walk to it.  They failed to tell me I didn't need to do it at warp speed.  I literally jumped out of bed and hightailed it to the chair.  I think I was ready for another nap.
I remember seeing Kara walk into the surgical discharge room.
I remember the nurse telling Kara I would be in this room for about 30 minutes.  I was in there for 3 hours.
I remember being SO, SO tired.
The nurse finally gave up and knew that I was a lost cause for going home anytime soon and just told me to take a nap.  Not a problem.
I was never really nauseous.  The drugs worked like magic.
I remember I was in very little pain.  The nurse kept asking me to rate my pain and I felt guilty at one point and lied and told her it was like a 3.  It was really like a 1.
I remember being thrilled that I didn't wake-up in recovery crying like a lunatic.  That happened with my wisdom teeth.
I remember being terrified that a wave of pain would swallow me at any moment.  It never did.
I remember then nurse coming in to give discharge instructions to me.  I feel asleep after seconds and the nurse realized I was a lost cause.
I remember vaguely getting up to use the restroom.  And of course it came in a moment of panic.  Kara told me later she felt horrible because the nurse had just sat down to eat her lunch when I decided I either needed to pee now or I was going to pee on the floor.
I remember Kara calling off work because we way underestimated the time I would be at the hospital and my condition when I left the hospital.
I vaguely remember getting dressed.  I'm sure Kara had fun with that one.
I remember being so grateful that a wheelchair would take me to the car.  And realizing "this is why they wheel you out of a hospital".
I got very excited when I realized the nurse would wheel me right up to the passenger door.  Nice.
I told Kara later that I could never pick out the face of my nurse in the surgical discharge area from a line-up because I was asleep most of the time.  I have zero idea what she looked like.
I slept most of the way home.  I vaguely remember getting out of the car and walking to the recliner in our living room.

The boys were playing outside with Grandma and Grandpa when I got home.  So it was a few minutes before they came in to the house.  I will never forget the fear on their faces when they saw me.  It made my heart skip a few beats.  They didn't even want to touch my hand.  I was the same person.  But they knew something was different and it was that difference that made me "not momma" to them in that moment.  It broke my heart in about a million pieces.  I never want my boys to be afraid.  We prepared the boys a lot before the operation.  They knew that I had a boo-boo in my left ear and that a doctor was going to fix it.  But there's not much else you can tell a two-year old.  And had I not been so tired I probably would have cried over it.      

That night was rough.  Kara took care of the boys and Grandma (my mom) helped get me into bed.  And let me just say that the vertigo and nausea hit hard about 7pm (so about 6 hours after surgery).  I literally crawled up to the bedroom and that was with a stop in the bathroom on the way upstairs.  I never actually threw up.  I didn't have any food in my stomach.  I think my mom had managed to get me to eat some oyster crackers.  And I was also on that ant-nausea medication.  Thank goodness.  I have never experienced vertigo but that stuff is serious.  I was literally crawling up the stairs and dry heaving into a bucket.  It was rough.  I did fine sleeping that night but it literally took me 4 hours and a couple of naps to get the ability to get to the bathroom to pee.  I am so grateful to Kara that night.  Kara has had many bouts with vertigo (unfortunately) but as a result she knew exactly how to get me through each situation.  I really would have reacted in the wrong way without her coaching me through the night.  I literally crawled to the bathroom to pee at one point.  I was a mess.  I managed to get through the night with only 1 1/2 nausea pills and only extra strength Tylenol  I was actually never in real pain.  I just had a headache from (1) being dehydrated and (2) not having caffeine for 24 hours.  I still swear that this has got to be like the least painful operation on the planet.  The only medications I am currently on are an antibiotic and prednisone.

So how are things now?  I am 3 days post the operation.  And I'm nervous.  I am out of the honeymoon period.  The miraculous recovery in my hearing ability has been diminished a great deal.  This was too be expected due to swelling and the packaging that has to remain in my ear for the next couple of weeks.  I try not to panic but it can be difficult.  I do know that I can hear better.  I'm just not sure how much better I can hear at this point.  I will take it one day at a time.  I have my post operative appointment with the surgeon on October 9th.  The packaging will be taken out of my ear at that point.  I'm not really sure when my hearing will get tested for the first time.  But we will deal with whatever comes our way.  I just ask for continued prayers to be sent in our direction.  I'm trying to remain optimistic. I'd really like to be back in the hearing world again.

Mary

Sunday, September 14, 2014

soccer

The boys have been participating in indoor soccer the past few weeks.  I enrolled them in the class under the assumption it did not require parents to participate in class.  But I found out the first week of class I was wrong with that assumption.  So the class has been a bit of a challenge because on most weekends it is one parent (me) and two kids.  I have been grateful that the grandparents have stepped up to assist.  We were going to try to do soccer all year but it looks like it is going to just be this 8 week session because it is too much of a challenge to find another adult to help out.  Anyhow the boys seem to be having a blast.  It is only a 30 minute class (long enough).  It typically involves about 8 - 10 other kids and the class format is such that the entire time is not spent with a soccer ball.  I think that's great.  Grandma and Grandpa came to class over the weekend and took a few pictures.  The boys were not as into this class as it was abnormally crowded.  The coach said a lot of kids were making up missed classes.  

Alex is all ready to go!


It's warm-up time.  The boys are doing "toe towers" in this picture.  It is a favorite.  We have even caught them practicing at home!


The coach always has the kids line up on the wall to get instructions.  I think my favorite part are the t-shirts that are way too BIG!


Alex always listens intently to the instructions and then proceeds to follow them without missing a beat.  Jakob on the other hand will listen to the first part of the instructions and then yell "Okay.  Okay.  Okay" over and over again until it is time to start the drill.  He gets so excited.


Here is Alex during their "running" drill.  Alex always brings up the rear.  He has only one speed.  Slow.


The class always ends with a game of Sharks and Minnows.  The kids have to kick their soccer ball at a parent.  If the parent gets hit, they must drop to the ground and let the kids jump over them.  And then the kids get a shot too.  The boys don't quite get the game but they LOVE to drop to the ground and have us jump over them.


I'm glad they boys have gotten a chance to participate in soccer.  They are doing so with so much enthusiasm.  I love when we walk into soccer each week and Jakob just screams out of pure excitement.  So fun.

Mary

Thursday, September 11, 2014

school


My view when I came down the stairs on the 1st day of school.  Sigh.

The boys started school this week.  They will be going to school Monday – Thursday from 8:30am – 11:30am.  It was really hard to get them excited about school because they could grasp very little about the concept.  We bought the book “The Night Before Preschool” and we read it before bed about a bazillion times.  We also visited the school on several occasions because some of our appointments happened to take place at the same location.  We also got a visit at our house from their teachers, Miss. Stacey and Miss.  Ashley, about a week before the boys went to school.  But even with all that the idea of school was completely foreign to them.  And it didn’t help that the boys had been sick leading up to the start of school.  So I guess it should have come as no surprise that the first day of school was a bit bumpy.


"I walk school Momma." (too bad we live about 3 miles away)

Alex did not sleep all that great the night before school and either did Mommy and Momma.  Alex is very clingy when he does not feel good.  Both boys had a minor cold but it was enough to make sleep difficult for Alex.  So the last few nights have resulted in a lot of cuddles during the night.  I spent the majority of one night laying beside Alex’s crib.  He would only sleep if I was next to him.  My little boy has super sonic ears and as a result any time I tried to sneak out of the room he would start to scream and cry.  So I embraced the challenge and spent a long night with my little boy.  I was afraid we were going to fall in a bad pattern because he repeated this pattern, thought in smaller spurts, for several nights in a row.  But now that he is feeling better he seems to be just fine being alone at night.  Yay!  So anyhow the first day of school we awoke with some cranky children.  And while our boys easily get up early every morning they only function at a slow speed.  We essentially have 60 minutes to change diapers, get dressed, brush hair, brush teeth, eat breakfast, drink milk and put on shoes.  Simple!  What takes an adult a total of 10 minutes can take a toddler 3 hours.  So by the time we got the boys in their car seats they were screaming bloody murder.  And then it happened … the car would not start!!  NOOOO!!


My big boys!!

I had changed the boys in the trunk of the car the day before and one of the little stinkers must have turned on the light in the trunk.  Our car battery was dead.  This would not have been a major problem had car seats not been involved in the situation.  But while we have two cars only one of the cars has car seats (those buggers are too expensive to own 4 of them).  So we all pile out of the car and Kara starts to put the car seats in the other car.  The boys think this is the best thing EVER!  And of course they are now running around all excited about the trip we are going to take in the special car.  And then during the chaos Jakob managed to get hold of the garage door opener.  He proceeds to hit the button to close the garage door.  This is not a big problem except for the fact that the CRV was parked in the garage with the trunk open.  There is a metal piece on the garage door that will scrap up the entire back of the car trunk if the trunk of the car is open while the garage door is put down.  Needless to say I immediately screamed “God Da*#! Jakob Daniel!” all while diving to get the opener out of his hands.  I was too late.  Sigh.  Okay.  No big deal.  This is why we don't have nice things.  We finally get the kids in the car and we are off to school.  And by the hair of our chin we manage to only arrive about 15 minutes late.


"Me get snacks Momma."

The boys were clingy as we walked into the school.  It was busy.  And of course the surroundings were fairly new to them.  The class is comprised of 8 students and 2 teachers.  All the kids in the class were born in either May 2012 or June 2012 so everyone is really close in age.  There are 2 girls and 6 boys in the class.  The developmental delay of each of the kids is all across the board.  It appears as if it is going to be a perfect mix of children.  The teachers have already indicated that the kids get along great.  So as soon as we walked in the room we noticed most of the kids were clinging to their parents.  But our little Jakob had some other plans.  Jakob immediately got down from Kara’s arms and screamed “TOYS!” while running around like a crazy man.  And much to my surprise Alex scooted out of my arms and followed his brother.  They could have cared less that we were about to leave them for the day.  We suddenly looked at each other with the thought, “How bad will it look if we are the first parents to leave the room?”  The good news is the enthusiasm of the boys seemed to rub off on the other kids and soon others were joining in on the fun.  Kara and I went over to the boys and gave them kisses and hugs and then we hightailed tip-toed out of the room.  They never even batted an eye.

I will admit that while Kara and I had to tend to getting the car battery fixed we were both still very lost when we left that school.  We seriously had zero idea what to do with ourselves.  It was the most bizarre feeling in the world.  And after about only 30 minutes we were really missing the little buggers.  Plus we were excited to get back and hear all about their first day.  So after what only seemed like minutes we were back at the school for pick-up time.  And our hearts melted as we turned the corner and saw the boys walking out of the classroom with their backpacks on.  Their little faces just lit up when they saw Momma and Mommy.  It was great.


 It's time to go home.

The boys have now been in school a week and already seem to be progressing in their development.  It has blown us away.  This is especially apparent in Mr. Alex.  This week has brought much more babble from our quiet man.  We now hear him all the time “talking to himself” and it is AMAZING.  We take Alex to speech tomorrow and I am really excited to get some feedback from his speech therapist.  We love the school and we feel so extremely blessed that the boys are able to be part of such a wonderful program at no cost to us.  They are being exposed to so much diversity all the while receiving such wonderful intervention services.  Our hearts are full.

Mary

Friday, August 15, 2014

bedtime with twin toddlers

I thought I would lighten it up a bit after my last post.

This was bedtime tonight.

6:45pm - It's bathtime.  But we can't go take a bath because Alex just decided, after 60 minutes, that he actually is very hungry and he would like to eat his chicken nuggets now.  (and Jakob's leftover fruit)  They are now cold and must be heated up again.

Now we can go upstairs.   No.  Alex would like two more chicken nuggets and some ketchup.  And just the right amount of ketchup.  A 1/2 a tablespoon is too little and 1 tablespoon is too much.  Note:  My official job title is now Psychic-Mother. Alex is appalled that I did not know his ketchup requirements.

Done.  Now we can go upstairs.  WAIT!! Jakob must take the "Planes" DVD case upstairs too.  Just the case.  No DVD.  God forbid I put the actual DVD in the case.  Now where is the stupid DVD case?  I can't find it anywhere.  Playroom?  No.  Living Room? No. Basement? No.  Drawers? No.  Dishwasher? No.  Trashcan?  No.  Oh wait he had it outside last.  Please God don't let it be at the neighbor's house.  I found it!  (in the flower pot)  We can all go upstairs now.  Where did Alex go?

MILK!!! (oh.  there is Alex.) MINE NOW!  (and Alex is not only shouting "milk" he is also rapidly signing it)  Ok.  You can have milk if you go upstairs.  CHOCOLATE MILK!  (have I mentioned how grateful I am to Kara for introducing the boys to chocolate milk?) "Jakob there will be no chocolate milk before bed."  URGHHHHHHHHHHHH!!!  (oh good a temper tantrum)  There might not be any chocolate milk but how about drinking your milk from these super cool cups with a big kid straw.  (problem solved)

7:15pm - It's bedtime bathtime.

I get the kids upstairs.  How did that happen?  I had to carry them upside down and over my shoulder all while signing the ABCs.  So for those that are counting at home that's 3 trips up and down the stairs. Jakob. Alex. Milk.  I start running the water in the tub.  I start undressing the boys.  The diapers come off.  Awesome.  Now we are rolling.  This is how we do bath in this house.  I am the master.  

"Ok.  We are going to wash our hair tonight."
Jakob - "No! No! No! No Hair! No! No Hair! No! No! NO!" (it's been two weeks since they got their hair washed and that is not an exaggeration).  Jakob is now trying desperately to fling himself out of the tub.  He clearly does not like hair washing night.  Okay.  Not a problem.  I'll simply body block Jakob while I wash Alex.  Done.  Now I can do Jakob.  I'm too late.  We are now having a full on fish flopping temper tantrum in the tub.  (wait.  he's flopping around in the water.  his hair is getting wet.  grab the shampoo woman!!!)  Done.  I again am the master.

I catch Jakob as he propels himself out of the tub.  I grab the towel. "NNNNNOOOOO!!! NO TOWEL!!" (whack) I just got hit by a bath towel.  (whack) (whack) I should probably grab that bath towel from Jakob.  I give up.  I don't want a screaming child.  The clothes on my body will suffice just fine for drying you off tonight Jakob.  "Come give me cuddles."

We  Jakob is now dry and the tears have stopped flowing.  He just needed some cuddles from Momma.  (a good moment) How do I get him dressed?

"Let's get your diaper on so we can go read books."
"NNNNNOOOOO!!!!  No diaper.  Me big boy.  Jakob big boy.  No diaper. No. No. No."
This is going just great.  Okay.   "Let me get your brother out of the tub."
"NNNNNOOOOO!  No Alex!  Bye-Bye Alex. Alex go night night." (you feel the love?)

I pull Alex out of the tub and lay him on the floor.  I grab a towel.  Jakob is pissed off.  He decides to climb on my back.  Awesome.  Now his hands are around my neck.  Oh good.  And now a hand over my eye.  Even better.  Oh good now both eyes are covered up.  It just got dark.  And I'm having some problems breathing at the moment.  It's getting hot in here.  

"JAKOB!  I need to get your brother dressed so we can go read books. Please kindly remove yourself from my body and go play with your toys."
"NOOOOO!!!"

deep breath.  Fine.  No worries.  My official title is now Psychic - Contortionist - Mother.  I knew this.  It was in the manual they gave me at the hospital. I successfully manage to dry off Alex.  I put a diaper on Alex.  And I put on his pajamas all while Jakob is hanging on my back.  DONE!  I am master of my domain.

"Okay Jakob.  It's time to get dressed."
"NNNNOOOOO.  I big boy.  No diaper.  No diaper.  Out wear.  Out wear.  Out wear."
What is "Out wear"? I have no idea.  (I need Kara.  She can always translate.)  
"Jakob I don't know what you are trying to tell me."
"Out wear. Out wear.  Out wear." (oh geez it's getting louder)
I'm only allowed to call Kara in a real emergency.  I'm starting to think this can be classified as one.  Sure.  There's no blood.  We are all breathing.  The house is not on fire.  But it's now 30 minutes past bedtime.  I'm tired.  My clothes are soaked.  And crap Alex is missing again.  
(think. think. think. ding. ding.) "Wait!  Do you mean underwear?"
"Yes. K.  Me big boy.  Out wear."
"Jakob.  You can't wear underwear to bed.  You will get all wet.  You have to wear a diaper.  Alex has on a diaper" (i think.  I can't find him. Where is Alex?)
"No."
(think. think. think.  ding.  *I'm going to regret this*) "Jakob.  I have special big boy diapers in the basement.  Do you want to wear those?"
"YES.  Big Boy."

We go out in the hallway and almost stumble on Alex who has managed to find a sticker pad.  My hallway is covered in stickers.  And I don't mean one sticker.  I mean upwards of 50 stickers.  I don't care.  I've been meaning to redecorate.  I like the bug theme.  And the dinosaurs are good accent pieces.

Jakob and I go downstairs to get the "special big boy diapers".  They are pull-ups and I am already dreading what the crib is going to look like tomorrow.  I don't care.  I just need them to go to sleep.

We are back upstairs!  "Okay.  Let's put on your big boy diaper."
Alex - "Mine.  Mine.  Mine."
"No.  Alex.  You are all dressed.  You are okay. Please keep on your pajamas."
Alex - "Mine. Mine. Mine."
"No.  Alex. These are for Jakob."
Alex - "Mine. Mine. Mine."
"FINE!  We can all wear big boy diapers tonight."

Jakob has already managed to open the package while I was negotiating with Alex.  The pull-ups are now all over the floor.  And S*IT.  The diapers all look different.  This means there are choices.  Really?  I'm going to write a very not nice letter to Pampers.  Why does each diaper have to have a different cartoon character on it?  I hate my life.

"Mine."
"No mine"
"Me turn.  No."
"Help"
"No.  Me.  Mine. Me."
"Mine!"
(just imagine this for about 60 seconds)

"Okay.  Okay.  Okay.  Who is going to show me how you pull-up your big boy diapers?"
"MMMMMMMMMEEEEEEEE"

We are finally all dressed.  And they go in the crib with no problem.  I rock.  Again.

We read some stories and for just a few moments my sweet little boys have returned to their bodies.  We are even listening intently tonight.

8:00 pm - It is time for kisses.  It is time for hugs.  It is time for more kisses.  It is time for more hugs.  And just a few more kisses but wait ... I am walking out of the room.  I am shutting the door.  The door is closed.  I've done it.    

"No.  Me. My crib. Momma.  Momma. Momma."
(just ignore them.  you hear nothing.)
"No. Help. No. No. No. No."
(you hear nothing.  just follow the light mary.)
"MOMMMMAAAA"
(wait.  i think those are the dogs.  those are definitely not the boys.)
"AAAAAHHHHHHHHHHHHHHAAAAAAAAAAAHHHHHHHHH"
(do not pass go do not collect $100. i'm going to regret this.)
(opens door) "What Alex?"
"Mine." (while pointing to the crib where Jakob is snuggled up under the blankets)
"Alex.  Jakob is sleeping in that crib tonight.  You can't both sleep in the same crib."
"k"
"Okay?  You mean you will lay down now and go to sleep?"
"NOOO!!!"
"Wait.  But you said okay.  What do you want?"
"Mine.  Help.  Mine." (still pointing at Jakob)
"Jakob?"
"k"
(think.  think.) "You want to share a crib with Jakob?"
"k"
"You won't both fit in the same crib."
"k"
"Alex.  You have to sleep in your own crib."
"no."
Jakob-"Momma bed?"
"no Jakob you cannot sleep in my bed"
Jakob - "Alex bed?"

I then proceed to have a 10 minute negotiation with Jakob and Alex over our sleeping arrangements.  I only wish I had the ability to transcribe what went down.  But it would be impossible.  But in the end.  Jakob and Alex fell asleep in their own cribs.  Jakob had to move to the other crib but was able to go downstairs and pick out a special toy for giving up this crib.  Yep.  That meant another trip up and down the stairs for those counting at home.

I finally walked out of the bedroom at 8:15pm.  That would have been 90 minutes after we started bedtime for the night.

I've so got this parenting thing down cold!

Mary  

Monday, August 11, 2014

the world through my ears

This is a long one.

I was terrified of thunderstorms as a child.  My parents always joked that I could "hear a thunderstorm in the next county" and anyone in our house would know if it was going to storm because I would be standing in my parent's bedroom looking out the window just waiting for the storm to come upon us.  It was the thunder that scared me the most.  The anticipation of it.  You knew what was to come after that initial lightening strike.  It would sometimes take a few seconds.  And other times it would be instantaneous.  The noise.  A noise so loud it would shake the entire house.  I would dive into the safety of my father's arms.  I'm still terrified of thunderstorms.  I fear them.  But my fear has been significantly minimized in recent years.  You see most of the thunderstorms in this region occur at night.  I'm asleep at night.  And now the loud thunder is actually more like a quiet rumble in my ears.  Actually there really is nothing that is "loud" to me these days.  My children are fairly quiet.  Their laughter amongst each other but a blip on the radar.  The people around me are quiet.  I no longer watch television but I instead read the words on the bottom of the screen.  There are no noisy restaurants.  My already introverted personality has only gotten worse.  And I actually cannot remember the last time I listened with the window open and heard the birds speak to one another.  My world is going silent.

You would think that the moment I noticed this silence I would have hightailed it to a doctor.  But for the most part the reduction in my hearing has been a very, very slow process.  It might have even started as a teenager.  But I’m not 100% certain.  I distinctly remember failing a hearing test in high school.  I’m not sure why the school never pushed the issue.  I was a teenager.  I know it was the last thing I was going to bring up with the parental units.  And plus with a gradual decline in any of your major senses your body just adapts to the situation.  I just had a new normal.  All I know is that my hearing got significantly worse shortly after the boys were born.  I distinctly remember during the delivery of the boys having a moment of panic because Kara was not in the operating room yet.  And then I looked over and realized that she was indeed in the room with me.  I didn't realize it because she was standing on my left side.  I never heard her enter the room.  I thought that was strange but then I forgot about it in the craziness of being a parent to newborn twins.  And in recent months my ability to hear in my left ear has all but gone to the wayside.  I have gotten scared multiple times because I don’t know that someone is standing next to me.  I'm also quiet certain that our car accident this past winter could have been prevented had I heard the fire truck approaching the intersection prior to actually seeing the fire truck approaching the intersection.  That has been the hardest realization during this journey.  So I guess you can also say that there was a huge denial factor at play.  I’m learning that this is common too.  It’s especially true in hearing loss among young professionals.  I’m 33 years old.  It’s really hard to face a hearing loss at such a young age.  It’s such a taboo subject.  I work in the corporate world.  It is an extremely competitive arena.  I already have one strike against me being a female in our financial division.  I did not want another strike against me.  A hearing loss is a major strike.  I have a family for which I am almost the sole provider.  But in recent months I had to suck it up and deal with the fact that I am indeed losing my ability to hear the world around me.  The fact that I can no longer hear a lot of the conversations in my workplace, and that I rely on instant message tools and e-mail almost entirely for communication, is actually now a bigger strike against me.  I realized several months ago it was time to deal with the situation.

I initially started this journey with my PCP but after no luck I found myself sitting in the waiting room of our local ENTs office.  I began with a hearing test.  The moment I started discussing my symptoms with the audiologist, prior to my hearing test, she began to nod her head in agreement, almost like she had heard this all many times.  I mentioned, at the end of the conversation, that I noticed a sharp decline in my hearing at the time I got pregnant with the boys.  I immediately followed that statement up with, “I know that is super strange.  And probably just a coincidence but I swear it’s when I lost most of my hearing.”  So needless to say I was blown away when she responded with, “Nope.  It’s not strange at all.  I can almost guarantee, based on your symptoms, that you have Otosclerosis. And we might be able to fix it.” Let’s just all pause at this sentence.  I dragged my feet for months and months and months on this problem.  We need to remember that the boys are now two years old.  My sharp decline in hearing began when I was pregnant with the boys.  I guess denial was a much bigger factor in my brain.  And within a few minutes of meeting with an audiologist I had a tentative diagnosis.  Not only a tentative diagnosis but the audiologist casually mentioned that it might be fixable.  The room may have started spinning just a bit.  I was a bit thrilled.  The audiologist proceeded to do the hearing test.  And I failed it.  I was blown away to learn that I had approximately a 80% hearing loss in my left ear and a 20% hearing loss in my right ear.  Crap!  I even had a hearing loss in my “good” ear.  Talk about your ability to adapt to your surroundings.  However, my hearing test indicated that I had a mix of sensorineural hearing loss and conductive hearing loss.  A sensorineural hearing loss involves the nerves in your inner ear and it typically cannot be fixed.  It can only be improved through the use of a hearing aid.  A conductive hearing loss means that something is preventing the sound waves from getting to the nerves in your inner ear.  It can sometimes be fixed.  I next met briefly with the ENT.  And within a matter of just a few minutes this doctor managed to take all the positive air out of my newly inflated balloon of happiness.  Way to go dude!

I walked away from the very brief meeting with the ENT with instructions to get an MRI and the words “tumor”, “rare”, “but more common these days”, “hearing aid”, and “as soon as possible” floating around in my head.  Those are literally the only words I really heard during my entire conversation with the doctor. Ha!  And there were a couple reasons for this.  (1) The ENT spoke softly the entire time.  “HELLO!  I’m here because I have a hearing loss ding-dong. It’s at the very top of my information sheet.”  I asked the ENT to speak-up several times before I just gave up. It’s not worth the battle.  (2) The ENT literally began the conversation with, “Hi.  It’s nice to meet you.  There’s a chance you have a tumor on a nerve in your brain.”  Um?  Do you really think it’s necessary to start this conversation with the word “tumor”?  Way to ease into the matter doctor.  The conversation actually ended with zero mention of Otosclerosis.  And in fact the conversation ended with my hearing loss only being able to be “helped” with the use of a hearing aid.  And that was assuming I didn’t have some rare tumor growing in my brain.  Sigh.

I think in the end Dr. ENT is just a bit socially awkward.  This was obvious.  And to be honest I want my doctor to be smart and talented in the end.  I don’t care if we can have a great conversation.  I’m not trying to make a new best friend.  I actually got a call from the nurse about 24 hours after my initial meeting with the ENT with instructions to get a CT scan instead of an MRI.  This was a relief as these instructions were now falling in line with what the audiologist had told me in our initial consult.  I think Dr. ENT just needed some time to review my records and my hearing test results.  A CT scan could be used to diagnose any abnormalities in my brain, such as a tumor, and it could also be used to diagnose Otosclerosis.  The doctor would be able to get a clear picture of what was going on.

I was scheduled for a CT scan the very next day.

(now time for a side conversation) The CT scan was actually being done at the same hospital where I gave birth to the boys.  This hospital had been a huge part of my life for so long.  I went to many prenatal appointments at this hospital.  I went into preterm labor in this hospital.  I learned at 26 weeks a newborn might not ever leave the hospital.  I eventually gave birth in this hospital at a very awesome 34 weeks.  I left my boys in the NICU in this hospital.  It was doctors and nurses who took care of my boys those first few weeks of their lives.  It was not their Momma or Mommy.  I learned to feed and bath my boys in this hospital.  And I had not walked into that hospital since the day we finally took Jakob home.  It had been two years.  I walked into the lobby of the hospital for my CT appointment and I immediately started to shake all over.  And I mean physically my body started reacting to the sights and smell of that place.  I thought for a moment I was about to lose it.  It didn’t dawn on me until I was taken back for the CT scan, in a room 100% like the triage rooms on the labor and delivery floor, that I was experiencing something probably very similar to PTSD.  I was all but was a puddle of mush in the room.  My mouth was dry.  My heart rate was through the roof and I had a few moments where I literally had to talk myself out of a panic attack.  I had to tell myself that I was okay.  That the boys were okay.  That Kara was okay.   I’m not sure my nerves ever really settled completely down during my appointment.  But I learned a lesson that day.  I might not physically or emotionally ever be able to handle another pregnancy.  The thought of premature births.  The thought of miscarriages.  I'm not sure it's worth it to me.  I'm not sure it's worth missing out on my life with the boys.  I could barely get through an appointment in a hospital.  How would I get though trying to get pregnant?  How would I get through trying to stay pregnant?

The CT scan itself was very simple for the most part.  It was a CT scan with contrast so the hardest part was getting poked in the arm in order for the contrast to be injected during the actual scan.  The problem was the nurse had to go take care of another patient and the actual radiologist decided to go ahead and start the IV herself.  Sigh.  I’m not exactly sure that the radiologist had had as much practice as the nurse.  Let’s just say after the radiologist went, “Geez.  I could be in here all day digging around for your vein.”  I kindly suggested that perhaps we have the nurse try the other arm when she gets back to the room.  The radiologist responded with a definite “That’s a good idea.”  I’m so glad she agreed with me because I was starting to get a bit woozy.  I think I might have been seconds away from passing out.  I've come a long way with my needle phobia but it still does exist.  And the radiologist had literally dug around in my arm for about 3 minutes.  It actually seemed like 30 minutes.  Needless to say the nurse, who does this probably 30 times a day, was much better with the task at hand.  The CT scan itself only took about 10 minutes and just required me to hold absolutely still and not let out any big sneezes!!.  Why does your nose always itch when you cant scratch it?  I walked away with a CD of over 1,200 pictures of my brain!  Sweet.  I still have yet to figure out what one does with 1,200 pictures of their brain.  Of course  I had to stick it in the computer when I got home to check out the pure genius that resides in my skull. (please stop rolling your eyes)  But of course I wouldn’t have been able to tell you my eye sockets from my ears on those pictures.  The good news … It looked like I did have a brain.  I think! I went home that night under the mindset “If I don’t hear anything in 24 hours it probably means I’m not dying.”  Please phone don't ring.

How about my phone rang at 10pm the next night?  Yeah.  I thought for a split second that it must be time to bury me in the ground!  You would have too.  I mean.  I was all cozy under the covers watching my Downton Abbey when my cell phone starts ringing with a unknown phone number and it completely ruined my evening plans of solitude in a toddler free peace zone.  I may have silently begged for it to be a campaign solicitor or some crazy drunk dial.  It wasn’t.  It was the ENT doctor.  The good news was that within seconds of picking up the phone the ENT was able to communicate that I did indeed have Otosclerosis.  The audiologist was right all along.  Though I did chuckle when the ENT began with, “I got the results of your CT scan and you have exactly what I thought it would be …”  No Dr. ENT you made me think I had a tumor in my head.  The audiologist told me it was Otosclerosis.

So what is Otosclerosis?  I'm starting to learn.  I think that at the most basic level it is abnormal bone growth in the middle ear.  This "sponge" like material forms around the bones in your middle ear and it prevents your ear bones (that's a technical term) from vibrating and sending the sound waves to your inner ear and then telling your brain what you just heard.  So basically my inner ear, with all the nerves, has been on a really long vacation because very few sound waves even have the ability to reach my inner ear.

Dr. ENT gave me some options .  (1) We do nothing. (2) I get hearing aids. (3) We do surgery.

I made a decision to get a referral to a surgeon who specializes in this area.  Dr. ENT does not do the surgery.  I know very, very little about the surgery at this point.  The surgery, a stapedectomy, requires a surgeon to remove the abnormal bones and replace the fused bones with a prosthesis.  A prosthesis would then fix any conductive hearing loss that was being caused by the Otosclerosis.  The surgery would not however repair any sensorineural hearing loss  Dr. ENT indicated that my ideal situation, should I be a candidate for surgery, would be to "fix" the conductive hearing loss and then "treat" the sensorineural hearing loss with hearing aids.  The hearing aids would then be required to do much less work.  There is a chance that I could completely lose my hearing in any ear where the surgery is done.  I believe that is why doctors initially treat a patient with just hearing aids.  And I would agree.  However, because I have a very severe hearing loss in my left ear, there is really not a lot to lose at the moment.  I would probably just use a hearing aid on my right ear until my hearing loss became significant enough to warrant surgery.  But there is a fine balance.  There is a chance the Otosclerosis has done significant damage to the nerves in my inner ear and the surgeon would not deem me a candidate for surgery.  I am trying to remain optimistic.

So what caused this condition?  There are a lot of discrepancies in this area.  Dr. ENT indicated that it is a genetic condition.  It is a common condition.  Dr. Google tells me that 1 in 10 people have Otosclerosis but only 1 in 200 people are ever diagnosed with the condition as a result of experiencing a hearing loss.  An individual with Otosclerosis typically begins to lose hearing between the ages of 10 - 30 and the disease is most often diagnosed in Caucasian woman in their mid-30's who are pregnant or have recently been pregnant.  Does this sound like anyone that we know?  How about that for hitting all the risk factors?  It is also commonly diagnosed in families with hearing loss.  We do not believe there is a history of hearing loss in my family.    

My next steps.  I have an appointment with the surgeon at the end of the month.  I have high hopes that the surgeon will take on my case.  I am optimistic.  It's the only way to be at the moment.  I feel so much relief knowing that there is actually a "cause" to my hearing loss.  I'm lucky to be an extremely healthy woman and if this hearing loss is what I must deal with at the moment then I am completely okay with it.  I hope at the end of the day I'm able to once again truly hear the world around me.  I would be on top of the world.  But, if at the end of the day, I'm not able to hear the world around me, I will still be just fine.  I am loved.  I have my family.  It's that realization that made self acknowledging this problem the most difficult task over all these months.  It's why it took me forever to see a doctor.  My family is my world.  And as long as I am around, with them, there is nothing else that matters.  I still have never been happier.  I am truly blessed.

There is also so much relief with finally telling those around me.  I feel as if I can actually breath again.  There is some bounce back in my step.  I have told my direct supervisor and I have told the team I manage on a daily basis.  It was difficult.  But I survived it.  I have not noticed being treated any different.  And in fact, even though my team now knows the extent of my hearing loss, they seem to always forget that we had a conversation it.  But I now have a free pass to go "Seriously?" with a grin on my face every time they come up and start whispering at me.  But there are still the people that do not know.  And it makes life in the workplace difficult.  This is especially true when in conversation with executives at m company.  The people I have to impress.  The people that control my future in the company.  But I am simply trying to take it day by day.

And now I just told a world of virtual strangers (and some family and friends).  But just as with my reasons for documenting my journey to get pregnant and my journey to stay pregnant, it is my hope that someone searching for answers might find a few on my blog.  

Mary

Thursday, August 7, 2014

speech update

I thought I would give a speech update on Jakob and Alex.

Jakob is talking up a storm these days.  It’s simply amazing.  I often forget that Jakob is still technically behind in his speech development because to us it seems like he talks non-stop.  The speech therapist recently gauged Jakob to be at about 18 – 24 months in speech development.  That’s not too shabby for my 27 month old.  So basically he is right on target for being a 34 week preemie.  Jakob still attends individual speech therapy on a weekly basis in addition to group therapy on a weekly basis.  We will be eliminating Jakob’s individual therapy and group therapy in just a few weeks.  It’s going to break his heart when he no longer gets to visit Miss. Jen on a weekly basis.   But there is more excitement on the horizon.  Some of my favorite phrases at the moment …

“my turn too”
"my turn"
"my turn pick too"
“me picky”
“pick up me”
“papa” (Grandpa)
“no mine”
“me turn my turn”
“milk please”
“more farts”
“aaalllleeeexxxx”
"me helping clean too"

Alex is also slowly starting to climb the hill in his speech development.  Alex now does a wonderful job repeating most sounds or single words when you request it.  Alex struggles with spontaneous verbal communication.  We have stopped “signing” with Alex but he often resorts to it before speaking the word.  There are some words that he both signs and speaks simultaneously including “more” and “milk” and “please”.  Alex still has many, many, many moments of frustration.  There are times I swear he knows the words to speak but he just can’t convince his brain to get them out.  This is usually in a moment of frustration.  I often wonder if it’s because Alex has to be focused in order to speak and so if he is frustrated he just can’t put all the steps together.  A couple of weeks ago I was in the kitchen and I heard, “Momma.  Momma. Momma. Now.” come from the playroom.  And my heart literally melted into a big pile of mush.  It was the first time that Alex ever “called” for me to give me a direction.  He will typically just walk up to me and start to do his “Alex grunt”.  It was awesome!  The speech therapist recently judged Alex to be at the 12 – 18 month range in terms of verbal development.  So we have a ways to go.  But he is definitely improving week to week.  There are moments of regression but I am proud of my little man.  Alex continues to go to individual therapy one time per week and then group therapy one time per week.  We will continue Alex in individual therapy for as long as necessary.

My favorite Alex phrase at the moment is “NO! MINE!” but only in the appropriate context.  Alex has a bit of a temper.  Who does that sound like?  And if Alex reaches his breaking point he will scream “NO! MINE!” followed by an “AAAAHHHH” while clinching his fists and pumping his arms.  You can literally see his face turn bright red and the veins pop out.  And be careful if Alex has something in his hands at the time because the object will go flying and while my 2 year old is behind developmentally in speech he is actually quite advanced in his ability to throw.  He has got an arm.  I so want to get this on video one day but the problem is you can never predict the moment!    

So there are big adventures on the horizon.  But unfortunately we are still in the dark as to exact details.  The boys will be starting preschool in September through the early intervention services offered through our community.  And that’s basically all we know at the moment!  We know the boys have been accepted into the program and we know that the teachers start back to school on August 18th.  We will be contacted by their teacher some time after that date to set-up a meet and greet.  We are thrilled to be given the opportunity to send the boys to school at no cost to us.  We hope that it allows them to get on track developmentally so they are all ready to go next year when they officially enter preschool.  I will keep you updated.  And no worries … there will be a million pictures taken their first day of school.  We already bought them adorable backpacks.

Mary

Thursday, July 31, 2014

the owl

We have an owl that hangs on our front door.  It’s made out of fabric.  Yesterday Alex decided to reach up and pull on the owl’s leg.  Off it came.  I was walking in the door from work and I said, “Oh no!  The owl has a boo-boo.  We need the stapler.”  And that was the end of the conversation.  I grabbed the owl’s leg and took it into the kitchen.  I’d deal with it later.  About a minute later, as Kara and I are catching up in the kitchen, we see Jakob walk by with his Fisher Price medical kit.  I look at Kara and I say, “Where is he going?” and she responds, “No idea.  Wait?  Is he going to take care of the owl?”  And when we rounded the corner there was Jakob taking out his plastic band-aid and his stethoscope to tend to Mr. Owl.  It was the cutest thing ever!

Mary

Wednesday, July 16, 2014

more cuteness

Alex has become a bit of a drama queen.  His speech therapist nailed it yesterday when she responded with, “You could be a soccer player.”  No matter the severity of an injury a kiss from Momma or Mommy makes it all better.  But here is the deal.  If Alex falls and hurts his head he will want you to kiss it.  But then he will also hold out his hand and make you kiss that.  We always have to kiss two body parts.  The one that was “injured” and some other random hand, or arm, or cheek, or head.  It’s great.  My favorite is when he “bumps” his head but immediately sticks his foot out for you to kiss it.  What about your head buddy?

We are in the midst of some bedtime shenanigans.  Of course most of the shenanigans come from Alex but at times the boys will work together to create chaos.  The exception was last night.  The boys had a big day at the zoo and did not nap a whole lot.  So I think they were tired.  But there is part of me that thinks I frightened Alex to bed last night.  We used to play a “monster” game at bedtime each night.  I was the monster and I would chase the boys around the nursery until I trapped them in a corner and lifted them into their crib.  This would cause fits of giggles and deep belly laughs.  So last night after the boys finished their bath I decided I would bring back the “monster” game.  The boys and I were getting our snuggles in when I started our typical countdown but with a twist of, “5 more minutes and then the ‘monster’ is coming out”.  I got a giggle from Jakob who immediately started to run around the nursery anticipating the arrival of the “monster” but I only got a raised eyebrow from Alex.  Our little thinker was at work.  It has been several months since we last played this game and Mr. Alex is now more versed in the definition of “monster”.  He knows there are “good” monsters and “bad” monsters.  I’m not sure he could remember that a “good” monster would come out to play.  So when my next time reminder came, “2 more minutes and then the ‘monster’ is coming out” I immediately got a “No. No. No. No. No.” from Mr. Alex all while he was pointing at his crib.  I was shocked.  I hesitated in my response but I finally said, “You don’t want to play monster? Do you want to go to bed?” and I got an adamant “YES”.  So off to their cribs they went without a fit.  And even more surprisingly my little man immediately laid down in the crib and wanted to go to sleep.  It was the easiest bedtime in ages.  I think I might have frightened Alex into sleeping last night!

Mary