Sunday, March 23, 2014

Calm Down!

I've been getting a lot of requests for updates on Quentin and his new ears.  Things have been crazy busy on my end.  I feel like I've spent the better part of a month at Children's, or having evaluations done, or dealing with insurance issues, or trying to keep my house clean, or running my business, or trying to keep myself sane... or... or... or... or.

But, in true Cathy Broz fashion, I pick up my exhausted pieces every morning and prepare for my day.  Most of my day consists of Mallory related activities and rotating around her schedule, but Quentin makes sure he reminds me that he needs to be a big part of my day too.  Especially now that his communication skills are extensively improving.

When he first started wearing the hearing aids, I was really worried.  I would approach him with his "ears" in hand and he would shake his head at me, put his hands up and say, "no, no, no".  When I would finally get him to agree to let me put them in, he'd say, "ow" and whine.  I actually started to believe that maybe the hearing aids were a bad idea and we should start learning sign language so that we could teach it to him.

Despite his initial resistance, we started noticing differences pretty quickly.  He was trying out new sounds, he was responding to his name and even some of his jibber jabber was starting to sound more like words.  This probably won't be as big of a deal to others as it was to me, but I was amazed that Quentin wanted to start trying out new movies.  Before the hearing aids, he would watch the same thing over and over... back up to scenes in movies he knew and enjoyed.  But there was never any volume.  He was never hearing it.  Now, he picks out new movies to watch quite often and he's even discovering he has favorites!  He'll sit and watch something from start to finish.  Like a whole new world has just opened up to him.

In the past few weeks, putting in his "ears" has been less cumbersome.  In fact, if we don't put them in right away in the morning, he'll run and get the jar they are stored in and start pointing at his ears (his actual ears!).  I'm so happy that they are really starting to become part of his routine to him.  He doesn't whine or cringe anymore when I put them in.  He sits still and sometimes I even get a thumbs up when I'm done.  Then he takes off running to play in his new world, full of sound.

Right now he has a therapist that comes to see him once a week but once he turns three, which is in 11 days, he will no longer be eligible for the Birth to 3 program and will be moving over to the school district.  The evaluations I was talking about in that first paragraph of whining has to do with getting him set up for that.  People coming to the house, seeing what his current skills are and what he needs to work on.  Starting in the next few weeks, it's entirely possible that my little man will be bussed to a school about 20 minutes away to receive therapy there for 3-4 days a week.  It'll be great for him though.  Being around other kids his age and learning how to reign in all that extra energy.  I know it'll be scary for him too.  I can't imagine what his first day will be like.  Wondering why Mom isn't there and why he's around all of these strangers.  Can you say tears?  Yea... I'm sure I'll have more than he does.

He really has come such a long way in a short time.  I'm so proud of him.  He's embraced his new ears and he's really putting them to use.  I hear "Mom!!" a lot more than I used to.  He's starting to count now.  The other day, after he finished his sandwich at lunch time, he said to me, "want Goldfish?".  It was awesome.  Every time I hear him break out something new, I want to cry.  It makes me so happy that these new "ears" of his really do have super powers.  To help him hear.  To help him grow.  To help him become the best Quentin he can be.

On a less sappy note, I do have a funny story!  Last Monday we had a follow up with Quentin's awesome audiologist at Children's.  After we were all done, I took him and Mallory to Target for some light shopping.  (He of course suckered me into a package of Cars, which he had half opened before we got to the register!  And when I say "suckered" I mean that I brought him down the toy aisle and let him pick something!)  I had Quentin in the front of the cart and Mallory in her car seat in the back part of the cart.  Mallory was sound asleep.  Quentin decided to turn around and start bothering her.  I told him not to bother her because, "Mallory is making ni-night.".  Of course, in response, in his loudest voice possible, he says (and this is how he says her name), "Malwee make ni-ni!".  It was so friggin' adorable!

When we finally headed to the register and I had gotten everything unloaded from the cart the cashier and I were having some small talk.  Again, in his loudest voice possible, Quentin looks at the cashier and says, "Calm down!".  It was as clear as day and probably the funniest thing ever.  Not to mention, this particular Target is probably the least busy and quietest place I've ever shopped.  The cashier looked at him with surprise and said, "Calm down?  We're not throwing a party in here!".  I've never heard him say that before.  Ever.  Most parents, including myself, get to experience their kids do things like that when they are maybe 12-18 months old.  I've waited a long time for this little guy to surprise me with new words and phrases.  Things he hears us say... and yes, "calm down" is a frequent phrase around my house.  I was so amused and excited all at the same time.  And when he shouted, "Bye, bye!" to the entire store when we left it was just the icing on the cake!

So, that's how Quentin and his new ears are doing.  Pretty spectacularly.  I'm excited that he's picked up so much in the month and a half he's had them and I can't wait to see how much more he's learned in the next month and a half!!!

Friday, March 7, 2014

They Grow So Fast!

Today I took my ten year old, Jeremiah, to pick up his first pair of glasses.  We got the call late Wednesday afternoon that they were ready.  We couldn't go that night though so we figured we'd go Thursday afternoon.  I had to take Mallory for a follow up with her surgeon but when I got back I loaded J up in the car and off we went.

On the way there, he talked to me about how he watched this movie in school called 'Hiroshima Maiden'.  He said that America was sorry that they dropped the bomb in Hiroshima after seeing what it did to the people who survived.  He also said it was so sad that so many people died.  It's kind of amazing to see our children grow into these awesome people with compassion and ideas of their own.

Once we got there, we pulled into the parking lot and walked to the door.  Sadly the door was locked.  The hours on the door indicated that they closed at 1pm on Thursdays.  I looked at J and said, "sorry, kiddo, looks like it'll have to wait until tomorrow.".  I swear, he looked like someone punched him in the gut.  I never thought I'd see a kid so upset over a pair of glasses!  He didn't say much on the way back but I managed to get him to crack a little smile by playing "Joy to the World" on my iPod.  Once he heard, "Jeremiah was a bullfrog!!", he looked at me and said, "Mom!".  

Today we got to do it again.  We didn't talk about Hiroshima but a car spider decided to scare the beejeezus out of us!  He asked me if a car spider was actually a type of spider to which I told him that it was.  You know, because it's in your car and it's a spider.  I explained how inevitably every time you discover you have a car spider it's usually unpleasant.  It'll come down on a web right in front of you or it'll be crawling on your hand.  Something that will probably make you yell out loud like a little girl and wish you could hop out of your moving vehicle.  After explaining this to him he then spent the rest of the ride up to the eye doctor telling me he couldn't wait until we got there so we could kill the spider.  It started crawling across the windshield in his direction.  He was frantically searching for something to kill it with because he was certain it was after him.  (I decided not to kill it, by the way, although I'm sure I'll regret that decision once it decides to make another appearance.)

We arrived in Downtown Lake Geneva to the eye doctor and went in.  The lady handed him his new glasses and he put them on.  He will never admit it, but I could tell he was totally excited by his new look!  He even checked himself out in the mirror.  What did I see when he put them on?  I saw maturity and intelligence.  Wisdom.  I saw a young version of his Daddy.

He really is growing up and I couldn't be more proud!

Saturday, March 1, 2014

Mallory's Surgery

Have you ever been having a conversation with someone and while the other person is talking their voice goes quiet, in fact everything around goes quiet and all you can hear are your own thoughts?  It's almost like no one is even there except for you.  This happens to me quite frequently.  The thoughts I hear are mostly things like "I can't believe I am having a conversation like this" or "I can't believe my kids have to go through this".  It happens mostly when talking to doctors.  Especially when they are talking about what is going to happen to my baby girl's head during surgery.

I know and have to come to grips with the fact that my life, our lives, will never be the same.  We have to shuffle around to doctors appointments and major surgeries are going to be almost routine.  But none of these thoughts prepared me for this past week.  Although it did go better than I had anticipated, Monday (the day of surgery), was probably the hardest day I've ever experienced.

We got up probably the earliest I've ever been up in years at 4am and made it out on the road by 5am. Once we got to the hospital, Mallory was admitted in day surgery and the whole process started.  We got her ready for surgery, changed her clothes, drew blood and started her on her meds.  Once we got her down to CT, it was time to say goodbye.  For hours.  I took a few pictures so that I could have something happy to look at while we waited.

Sitting in the family waiting area was brutal.  There's a TV screen there on the wall where kids are assigned a number and through out the process of surgery you'll see their statuses change.  Mallory's said "Procedure" the longest of anyone in there.  I think I looked at it like every ten minutes for any change.  I spent my hours watching old episodes of Grey's Anatomy on my iPad.  Yes, I totally get that was probably not the smartest choice given the circumstances, but hey it was entertainment.  Not that I was paying much attention to it.  All I could think about was my baby girl on an operating table.  My anxiety was at all time high for the entire time.  I never felt like that before.  I was so scared.  Hoping and praying that there wouldn't be any complications and that she'd come out just fine.

We got two updates while we sat there.  The first one came about two hours after they brought her down.  Our surgeon's nurse said that it took them a little while to get IV's in and then a little while to get her positioned properly but that surgery was successfully underway.  Two hours later she called again.  She said that everything was going very well and that they'd be done in about an hour.  I felt so much better.  I had this lump in my throat when I went to share the news with Frank.  I felt so relieved.  I just wanted to cry.  I did very well though... I didn't cry in front of anyone!  (I'm a terribly UGLY cryer, so I try not to cry in public... EVER.)  It made me watch that screen even more closely to wait for her surgery status to change.

Finally her status changed to "Recovery" and our surgeon came down and told us that everything went well and that they only diverted from the plan just a little bit.  She was supposed to have four pins placed but they ended up only placing three. This was mostly due to the fragile state of parts of her skull.  He let us see her for a minute and give her kisses and then they brought her up to ICU to recover.

For those wondering what the "pins" are, they are distractors that are attached to her skull with screws.  Don't ask me for the physics behind how it all works (because I don't really know it.. lol) but basically what happens is that we turn those pins 3 times a day .3mm at a time.  This will create a space in her skull and will slowly allow new bone to grow.  The hope is that in about 3 weeks her skull will have expanded about an inch allowing for more brain growth space.  Once that 3 weeks is up, she'll have the distractors removed and she shouldn't need another cranial surgery for at least a year.  Then we move onto her hands.

Seeing her was such a relief.  There she was.  My baby girl.  She was okay.  Frank and I had expected a swollen face and bruised eyes, but we didn't see that at all.  Yes, she was swollen, but nothing close to what we thought.  It made my want to cry a little less (which was nice because again... I didn't want to UGLY cry in front of anyone).

The next couple days we did our best to keep her comfortable.  She was angry about eating, she threw up and she looked at me with utter betrayal.  She did give me a few sweet smiles here and there though and I saw that she was slowly becoming herself again.  Including eating all of her wires!

I spent every day and night at the hospital with her except for Friday night.  Frank relieved me on Friday so that I could rest up a bit.  The only time I really left the room was to grab some of that wonderful grub from Cafe West.  Okay, it wasn't too bad but they don't have a huge selection so it was a lot of eating the same things over and over.  I think the next time they have beef fajitas I'll stay away from it though.  Ugh.  They were pretty tasty but the after smell, not so good!

Wednesday was the great unveiling.  Her dressings came off and I saw her "antennae" for the first time as well as her incision from ear to ear.  It's so distressing, but all I could think about was how our surgeon described what he was going to do.  Peel her scalp back.... yaddi yaddi yadda.... put screws in her skull... yaddi yaddi yadda.... and so on.  And here was this zig zag incision, like it was put back together like a puzzle piece.  I can't seem to rid myself of that vision.

Shortly after the below picture of me holding her, she vomited all over me.  In front of a room full of doctors and nurses.  It was pretty awesome.  I don't blame her though!  All of that moving and shaking!  Once her head was nice and open to some fresh air she seemed to feel better.  No more of that heavy dressing to weigh her down!

Mallory's recovery at the hospital went very well.  She was on the ventilator coming out surgery but was off on day two.  Her oxygen levels, heart rate and lungs looked great.  All that was left was to do her first pin turn which would come on Friday.  Can I tell you just how scared I was for this?  Friggin' terrified.  I thought it was going to be hard and complicated.  I thought it was going to cause her a lot of pain.  Once her surgeon came in and walked me through the first one though, it didn't seem so bad.  I picked up the tool that we're using to turn and turned the other two.  It wasn't hard at all.  She didn't seem too upset by it.  And for only 21 days?  I think I can handle that.  Her surgeon wanted to monitor her pain level for the day and then said we should be able to take her home in the morning.

We had one minor hiccup that made us think that we weren't going to be able to come home on Saturday, but there ended up not being a problem.  So homeward bound we were!!!  It's so awesome having Mallory back in the house and you can tell that she's happy to be here too.  She was smiley and talking up a storm again.  Being her happy little self.  I don't know how she does it.  She truly inspires me.  She had major surgery just five days ago and she's back to figuring out how to eat her toes and chewing on her pulse ox wire.  I tell you, she is one tough chickie!

Now we spend our time trying to figure out how to keep her off the back of her head, yet comfortable.  We came home with some foam head donuts that we've cut into half circles but we are still struggling to find a way to make that comfortable for her.  It makes her sit with her neck forward and she gets pretty angry.  It's still a work in progress though and we have a few more ideas to try!

Her first night home went well too.  It was a little nerve wrecking.  I was sure I was going to find her in the morning off of her donut, laying on her pins.  Not the case at all!  She was still nicely laying on the donut surrounded by all the support blankets I put around her.  Not to mention, I think she got the first good nights sleep she's had since the night before her surgery.  Her bed.  Her room noises.  No one bugging her in the middle of the night.  Nice and peaceful.

Anyway, I think that covers pretty much everything.  Here are a few more after pics of Mallory including her new peach fuzzy head, her first photo at home and my wonderful sleeping quarters for the week!  I particularly love her car seat photo and her big, beautiful eyes peeping out!