The Last Day of Kindergarten

Tomorrow is Brian's last day of Kindergarten.  I didn't think I would be emotional about it.  I thought I had been there, done that, and was over getting emotional over graduations.  And then, as I addressed my student body and their families at my preschool promotion ceremony last night, it hit me. 

I don't do a lot of planning when it comes to speaking in front of the preschool families.  I used to meticulously plan out every word because aside from crawling under the pulpit (which is what I really wanted to do) it was the best thing I knew how to do to get it right.  I was not a fan of public speaking.  I'm still not a fan of public speaking, but it's becoming easier.  So now, instead of writing out every word, I make a bulleted list.

This year I decided to share the end of the year writing that Brian's teacher sent home with the group.  I had it on my list of things to say, and for some reason, I prefaced it with something like this...

"My son, Brian graduated from Kindergarten last week.  Some of you know that Brian is a large part of the reason why I am at St. Pats.  Brian has hearing loss, he was born with it, and after he was born I quit my full time teaching job so that I could make countless trips to Children's hospital.  Not long after, I ended up taking this position where I had the flexibility to take care of my son and continue to do what I love to do.  His teacher sent home this end of the year writing, and I wanted to share it with you all tonight."

I read the words that she had sent home (adapted a little to fit our situation) and I made it through without crying.  After I finished and as I retreated to the pew to listen to Fr. Jeff's words, the hugeness of what I had just said hit me.

When I came to St. Pats, Brian was 9 months old.  We were terrified.  We had no idea what his hearing loss really meant or how it would impact our lives, or his life.  And now, just 5 short years later, he has graduated from Kindergarten.

He's okay.

We're okay.

Although we think about his hearing loss and deal with the complications it brings daily, we also count our many blessings daily-the blessings that he has brought to our family with his sweet smile, his devious sense of humor, his overwhelming intelligence and his unbelievable ability to adapt and to overcome.

Congratulations, Brian.  You have come so much farther than some would have expected.  You have moved mountains and will continue to do so.  We love you. 

And in case you are wondering, the end of the year writing went something like this...

     I give you back your child; the same child you confidently entrusted to my care last fall. I give you your child back pounds heavier, inches taller, months wiser, more responsible, and more mature than before. Although your child would have attained this growth in spite of me, it has been my happy privilege to watch this personality unfold day by day and marvel at this splendid miracle of development. I have thrilled at each new achievement, each new success, and each new expansion of self. I give your child back reluctantly; for having spent nine months together in the narrow confines of a classroom, we have grown close. We have become a part of each other, and we shall always retain a little of the other.

     We have lived, loved, laughed, played, studied, learned, and enriched our lives together this year. I wish it could go on indefinitely, but I must give your child back to you. Take care of your child, for your child is precious.

     Remember that I shall always be interested in your child and in your child's destiny...wherever your child goes, whatever your child does, and whoever your child becomes. Your child's joys and sorrows I'll be happy to share.  We shall always be friends.

 


 

Accommodating

Brian's doctors have always maintained that he is quite intelligent and because of that he would find ways to work around his hearing loss.  He has often impressed us with his ability to create his own accommodations.

In December Brian completed his second round of MAPS testing.  This testing is done three times a year to see where students are in math and reading.  Testing is done on a computer and requires the use of headphones.

His first round of MAPS testing was in September and was incredibly frustrating for us.  He had just gotten his hearing aids, and the school as unable to provide the proper technology for him on short notice.  I made sure to let his teachers and specialist know that the best scenario for him would be to be tested in a room where the computer speakers could be used rather than headphones, but if that didn't work out, his hearing aids should be removed.  I offered multiple times to stop by and teach them how to remove the hearing aids. 

After testing I found out that basically none of this happened.  I knew I had not taught them how to remove the hearing aids because they never set up a time for me to do so.  (This by the way would have taken about 3 minutes to do...it's not rocket science.)  However, I didn't know that the rest of my requests had been ignored until it was too late.  I was INFURIATED to find out that for much of the testing the headphones were placed OVER his hearing aids which anyone with half a brain knows caused a tremendous amount of unnecessary feedback.   Just ridiculous.

I moved on because what else could I do?  The school ordered the appropriate equipment.  We did our part by getting the replacement battery covers from our audiologist so that the cord could be plugged into his hearing aids.  So I was pretty darn mad at pick up on the first day of December MAPS testing when he came to me upset because he had huge gold covers on his red hearing aids.  Poor guy.  The speech therapist explained that the ones the audiologist provided weren't a match with the cord the school ordered, so they had to use the gold ones.  Fine.  I let it go and told the speech therapist I would speak with our audiologist and find a solution for May testing.

At the audiologists recommendation,  I asked Brian's school if I could borrow the cord and battery covers (boots) so that the audiologist could figure out what the problem was.  It was a huge, big deal apparently and I had to wait for the school to get permission to loan me the equipment and then I had to sign my life away so that I could take it off school property.

I took it all and dropped it off for the audiologist.   I got a call the next day from Children's, which I missed, and I assumed the audiologist had looked it over and it was ready for me to pick up, so I headed over there (this was one of the lovely below zero days we have recently been treated to).  When I told the receptionist why I was there she called the audiologist who informed her that he needed Brian's hearing aids.  I told her that was fine, but that we needed them back for school the next day.  She suggested we go shop and come back in an hour.  Just what I wanted to hear.

An hour later we returned to find that the audiologist had changed the battery covers back to the gold ones basically completely ignoring what we had discussed.  I was beyond frustrated at this point after having gotten the kids in out and in the freezing cold three times at this point and after having spent money unnecessarily at the bookstore only to have my request completely disregarded.  I was told I would have to wait 1-2 hours which was an insane suggestion, so we left.  Brian was upset, but bless his heart, he agreed to wear the aids with the gold covers until I could get it straightened out.

By the time we arrived at home the audiologist was calling (1-2 hours my you know what).  He did exactly what he needed to do and whole-hardheartedly apologized for the screw up.  Then he talked me through fixing the issue.  We also talked about getting red boots to replace the gold ones.  He asked me to find out of the school would order them because they can get them MUCH cheaoer, and of course I will pursue that, but in the end we don't really care what they cost as long as Brian is comfortable in them.  Finally he said, "Maria, the most important thing is, you need to know, the cord from school wasn't working.  You have to program the aids to work with the cord and it wasn't programmed.  I fixed it, but there is no way the cord worked for December MAPS."

WTH?!!!!!!!!!!!!!

So I spoke with the speech therapist at school this past week about the audiologists findings.  She couldn't believe it.  She said she sat with Brian the whole time and he was even repeating questions aloud that were being asked through the headphones.  She had headphones in too and was hearing everything the test was saying.  I just kept saying, I don't know what to tell you, the audiologist said it wasn't programmed properly.  Finally she had an aha moment.  She said, "Oh Maria.  He had me turn the volume all the way up.  It was so loud that I couldn't stand it and had it down around my chin."  But that didn't make any sense.  Why would he want it really loud with his hearing aids in?  And really his hearing aids prevent sound from getting too loud, so it really made no sense.  She went on,  "Maria.  He was listening through MY headphones!"  Oh. My. G!

I am really, really proud of Brian for accommodating for himself when the adults failed him a second time, but I am really freaking frustrated with the adults for failing him.  Again.  Get it together people!  I really don't understand what is so complicated about this.  I know for a FACT he isn't the only kid in the school who has hearing aids and he certainly isn't the only one in the district.  Far from it!

Bless you if you read all of this.  I know it's a lot of explaining, but I wanted to be sure to put it out there in case anyone out there finds my blog and is looking for help with their child with hearing loss like I was years ago when I found No Small Thing.  Kirsten's words and advice were so incredibly comforting to me and there isn't enough out there for parents of children with hearing loss as far as I'm concerned.    I was always searching for someone who could really related and I hope I can be that for someone in need.

On a side note, Brian does more than just accommodate for himself.  He continues to excel and impress all of us with his abilities!  Last week he was named Student of the Month for Extraordinary Creativity AND Writer of the Week-IN THE SAME WEEK!!  He was sooooo excited to show me the letters from school.  His Student of the Month Ceremony is next week, but the Writer of the Week Award was posted at school this week.  (In case you are keeping track this is his SECOND Writer of the Week Award this school year!!)  And I'm such a dork, so I took a picture.

Fall and a Brian Update

This should really be two posts, but I am out of time today!  Tomorrow is set to be our last aural rehab appointment.  This means that Brian has done a great job transitioning to wearing his hearing aids and he has met or is very close to meeting all of the goals they set for him!  This means we are heading back to what should be our last segment of time in private speech therapy.  Can I get a Hallelujah?   P.S. Brian also got a 100% on his first AR test today.  That kid rocks!

Onto the fall happenings.  We have visited many a pumpkin patch.  Lilah went twice with the preschool and we also went with some of our best friends.  One of the preschool days Uncle Bill and Gavin even joined us!

The kids are LOVING their costumes and have had several chances to wear them.  They have attended two Halloween parties-one at Brian's school and one at the preschool.  It's such a fun time of year with kids!

I apologize for the many, many pictures below.  There were many, many more taken :)

Brian LOVES these things!

This is the new thing...finger in nose.

He made the pin after getting it out of treat box.  So excited!  He later gifted it to his teacher. 

Had to get Bib's kissing pic!

Argh!

So excited to be riding a school bus to Brian's school Halloween party!

Proudly showing off his class pumpkins!

Cool spider hats they made at the preschool Halloween party.

To Aid or Not to Aid?

That has been the question Brian's entire life.  We have had a variance of opinions on the matter since he was born.  It's been...well to say frustrating would be the understatement of the century.

So here is where are today.  We are doing a hearing aid trial.  We've come to the conclusion that we will never know if it would have helped him if we don't try.

We've been telling people little by little that this is the decision we have made and have gotten mixed reviews as expected.  The most frequently asked question has been, why or why now?  I understand that people will think there has been some sort of defining moment that struck us and steered us in this direction and that's honestly not the case.

He seems to be doing well in Kindergarten.  His speech continues to progress.  Are there holes in his speech?  For sure.  Do we think it could be better with hearing aids?  Probably.  We hope so.  With or without hearing aids, we want his speech to be the best it can possibly be.  So why not try them and see if they help?

We have also been asked if the aids are effective if we will wish we had tried them sooner.  Of course, we will to some extent, but honestly, we had reasons, good reasons, to wait.  We wanted to see how far  we could go with speech therapy.  We wanted Brian to learn to work hard for things.  We needed to see what kind of a kid he was going to be.  Luckily, he's a pretty confident kid.  He is comfortable with himself and we believe he will wear his hearing aids proudly.  Also, there will be plenty of instances in which he won't be able to be aided.  The pool, the beach, bath time...all examples of instances where hearing aids can't be used.  It will be nice to know his capabilities in these instances so that he won't be able to pull the whole, "what?  I can't hear you...I don't have my hearing aids in."  :)  And finally, Brian had some MAJOR sensory issues.  He needed to work through those with the help of his OT before we could even consider adding something so foreign to his ears on a daily basis.  We are lucky and he has been very successful in learning to manage his sensory issues, so now we are at a point where we feel he can handle adding hearing aids. 

Brian is excited about the hearing aids.  Every five year old boy needs a super power and we've told him that this will be his.  He'll be getting "super hero ears." Well one for now...they trial with one, and two in the future most likely.

We went on Friday for the hearing aid evaluation and came home with the trial hearing aid.  It's smaller than we anticipated.  Because his loss is mild, the aid is smaller.  It makes sense, but for some reason we didn't realize this would be the case.  His trial set up is a black hearing aid that goes behind his ear and is connected by a tube to the green ear mold that goes in his ear.  We had a mold made about 2 years ago when he was out for a tube surgery and ABR.  This was supposed to be used with his FM system at school, but the county didn't purchase the system we expected and it wasn't necessary.  The mold still fits well enough to use it for the trial, so that's what we're doing.

In the weeks leading up to the appointment we did a lot of talking about the hearing aids.  We read a book about an elephant that gets them and Brian was very worried by the picture of the elephant getting fitting for the ear molds.  They use a syringe filled with goo to make ear impressions and to a 5 year old this looked very much like a shot going in the elephant's ear.  I made sure to share this with his audiologist and Tommy was very thorough with Brian about the process.  He let Brian play with the syringe, squirted the goo in Brian's hand, let him play with it, etc. before ever squirting it into Brian's ear.  Brian was a champ with this and got really excited when we showed him a picture of what it looked like as it was drying is his ear.  It looked like a snail shell and since "Turbo" is popular right now he thought it was just great that a, "snail was coming out of his ear!"  He's so funny!

Once he had the trial aid on he was really cute about it.  He checked it out in the mirror, tested out his own voice with it on, ran around in the hallway to "hear the air."  It was pretty cool to see him so excited.

He's supposed to break the aid in however suits him.  The goal, of course, is to wear it all waking hours (except swimming, bathing, etc.) so we are working up to that.  I think is uncomfortable for him at times, and he asks us to take it out, but today he was a rockstar with it.  He wore it to "make something" at Lowes, horseback riding, and a friend's birthday party...a total of about 6 or 7 hours.  He showed it off to everyone we saw and everyone has been really great and supportive of him.  It was nice that we had the party because now most of his school friends have seen it.  We are debating whether to send it to school on Monday, but I suspect he will insist.  The biggest issue is that this is a loaner, which means we owe quite a bit of money if it's lost or damaged so he has to keep it in!  It's hard to think about sending him somewhere that we can't control this...at least at first.  I'm sure it will get easier.  Once we go to two aids, which I expect we will, we will have to buy them (or the insurance will depending on what they decide to cover) and they will be insured, so we won't have that worry anymore.  He got to pick the colors for his permanent aids by the way and he picked red aids and blue/red swirl molds.  A mom who I found online whose son is aided once told me that she wanted her son to be proud of his aids and not ashamed of them.  We have adopted this mantra as well and therefore allowed him to pick what he wanted.  There will no hiding these babies, but that's great!  Everyone will know he is a superhero.

We appreciate your support and prayers as we delve into this new chapter.  So far it's honestly been a lot easier than we anticipated.  Hoping that will continue.  We'll keep you posted!

Brian showing off his new "super ear."  Er, and the inside of his nose...

Brian's Progress and Running in Circles

Before Christmas we met with Brian's teachers to discuss his IEP.  We knew it was going to be a good meeting because his teacher kept saying how well he was doing.  We could tell too.  He was coming home each week telling us all about what they were doing in school.  He has learned most of the alphabet since school began this past fall-how to recognize the letters, phonetic sounds and how to write them. 

We found out at the meeting that he had surpassed all of his IEP goals. These goals were supposed to last him until May of this school year.  We wrote new goals at the meeting and found out that he has been released from occupational therapy at school.  The therapist at the meeting said (and I am paraphrasing obviously to some extent), he was supposed to be working on pre writing shapes according to his goals.  Obviously, he has those mastered.  I came into today to check and make sure he could still do those and he did.  Then he drew a Christmas tree for me.  Hahahaha!  You go, Brian Thomas!!

We discussed the FM system that was introduced about halfway though the semester.  Based on the data collected by the teacher, he was just as likely to stay on task without the system as he was with the system.  The best news, though?  He does stay on task.  Just like he's supposed to!

Then we talked about next year.  Before Brian was born, we talked about how we would likely hold him back due his birthday and gender.  When he was born with hearing loss, we said we definitely would.  So we have been tossing around how to make this happen, when to do it, etc.  Since he's in state preschool, he can't be held back this year and stay in the public system.  But, as it turns out his teacher said it would be a disservice to Brian to hold him back at this point.  She said he is more than ready for Kindergarten.  She said he is at or above where the other kids in the class are.  Ahhhh!  Great news right?  Well I thought so when I heard it.  But then I realized.  My baby has to go to kindergarten next year!  AHHHHH!!


More on that later, I'm sure.  For now, I will just be happy that he's doing so well.  Progress is a wonderful thing.  A few days after the meeting, I was chatting with one of the classroom aides.  She said that Brian is a leader in the classroom.  That he has about 8 little friends that follow his lead.  Wow!  I'm not sure I thought I would ever hear that.  He has just come leaps and bounds in such a short amount of time.  I couldn't be more proud of him!

Changing gears... for those of you who think a post is not a post without pictures, there are some below.  Brian and Lilah think it is hilarious to run in circles around the kitchen table.  I captured some shots of them doing just that the other night.  I think they are pretty great if I do say so myself!

A Fun Day at Children's

These pics have been sitting on my desktop for a long time, but I am going to put them up because I have some time and I don't have my camera to pull off the new pics!

As I already posted, both of the kids' tube surgeries went fine. Lilah was smiling like normal by the time we got to recovery. Brian was ticked off, but he was just fine, really.

We were thrown for a bit of a loop by the audiologist who did his ABR. She was pretty adamant that we need to aid him. After talking to our audiologist and our ENT who actually know Brian, I don't think we are heading down that road just yet. It looks like we will try an FM system in the classroom next fall.

That's another story, as we have been struggling with where to place him in the fall. We considered the school in our neighborhood because they have a hearing unit, which may be beneficial to Brian and to us as we make decisions for him over the next couple of years. Then I visited the school. Wow. It's big! They have four preschool classes, and his current school has only 1. This isn't that big of a deal except at common times like lunch and recess. I feel like he would be really overwhelmed.

We are meeting with our audiologist in May and will make a final decision then, but we are heavily leaning toward keeping him where he is.

Anyway, here are my babies all dressed for their surgeries!

Tubes for Two

The kids tubes surgeries have been scheduled for this coming Friday, March 16th. They were originally scheduled for Wednesday, but we had to move it. Brian will also have an ABR while he is out to check his hearing in an environment where his behavior cannot impede the efforts of the audiologist. I have to call on Wednesday to see what time the surgeries will be, but the tentative times I have been given are 11:11 and 11:33. These are easy and quick procedures, but Lilah has never had anesthesia before, and we've never been through two surgeries in one day, so prayers would be appreciated for both kiddos!

The Tornado, the Missed Flight and the Tubes

Over the weekend we went to my grandmother's 90th birthday party in Cape. We made a last minute decision to make the trip and decided it would be best for Mom and I to fly with the kids. When we booked the trip a week out we had no idea that the weather forecast would change so drastically in a week's time. By Thursday night we were more than a little nervous about the severe weather coming our way, but we figured we would just make it work.

Friday when the tornadoes hit the area we were in the last row of an airplane and were forced to evacuate back into the airport tunnels. Let me tell you, it was an adventure. I had the foresight to make Brian pee before we left the plane, knowing there were no bathrooms in the tunnels. After sitting in the tunnel for over an hour with 3000 people (give or take), we finally boarded our plane and were off to St. Louis.

The kids did really well until we were asked to buckle up and prepare for landing. Brian had an absolute fit and laid in the floor screaming. It was a joy, let me tell ya!

Once we finally got into St. Louis we were toast, so we got our rental, headed down the road a ways and then found a nice hotel to stay the night in.

The party and family visit were very nice. I will post more about that later when I get picture uploaded and I steal some from Teri!

The trip back was not so very nice. We missed our flight. It was a nightmare. I cannot even talk about it really. We ended up making the decision to drive back home because the kids had ENT appointments at 10a.m. Monday morning. I knew it would be hell, but I also knew both kids needed tubes and if we missed the appointment, that would only delay them getting the tubes.

We made it back without too much trouble. We were very tired, but okay. I was right about the tubes, and now I am just waiting on Children's to call me with the date and time. We have asked that they both have the surgery on the same day. It will be a long day, but better than two very long days! Brian will also have that ABR the audiologist has been pushing me to do while he's out. I will post the surgery dates when I have them!

Checking In

Just checking in to see if anyone is still out there? I have posted so infrequently, perhaps you have all gotten bored and disappeared.

Does life ever slow down? I keep thinking it will and then it doesn't.

Lilah is still battling it out with the double ear infection. She got a shot Monday, followed by one dose of a really strong oral antibiotic. The doc was hoping to "nuke it," as my Mom put it. The results? TBD. She did sleep better last night and has seemed generally happier the last two days. Here's hoping! We do have an appointment with Brian's ENT for her on March 1st just in case. After dealing with tubes twice with B, I almost wish we could just go that route now with Lilah. It takes all the questions out of it, which is nice. Sedation is scary though, so I am torn! This is the third round of antibiotics though, so something's gotta give! Oh, and Miss Lilah is allergic to penicillin. Which is no big surprise considering my mom, Brian and I are also allergic. The poor baby was covered head to toe in spots when the reaction finally showed up. I have pictures on my camera which I will load someday!

Brian is really enjoying school! He comes out with the biggest smile on his face. He seems to be talking and interacting more, although it tends to come in spurts, so some days I spend all day worrying about it and then I spend the next day wondering what I was so worried about! His OT, Kacia, is changing jobs, which I think is going to be so tough on him. He adores her and I am a fan too. She's done a great job of figuring him out. The core strength exercises she has had him doing have done great things for him and she thinks she has finally figured out his eating issues. She thinks that's related to strength-or lack of strength too. It seems that his jaw and lips are weak. So now we have exercises to work on this. It really makes sense and it may help with his speech too from what my aunt says. This totally makes sense as well as the letters that he has a harder time with are made from the parts of his mouth that are weak. Slowly piecing the puzzle that is Brian together, right?! But it really stinks to loose the therapist that has made it all possible. I hope his new one will be just a great!

A few weeks ago Brian agreed to try wax ear plugs so that he could attend two different (LOUD) events. Normally we steer clear of these, but now that's he old enough to be agreeable to things like ear plugs, we decided to give it a try. We went to a dinosaur exhibit one day and he attended the Family Dance (a huge fundraiser for my preschool) another day. He had a blast at both!Potty training is still a work in progress. Number 1 is pretty much good, but Number 2 is a different story. At Melissa's recommendation, we will be stocking a "poop jar" this weekend. And no. It is not a jar to keep poop in. Thankyouverymuch Shawn and Nana! It's for treats that one receives for successfully pooping in the potty. Geez!

Health Updates

We picked Ruben up from the vet yesterday around 5p.m. He looks like frankendog, which is what they said he would look like. Both of his front legs are shaved, he is shaved from the top of his head to about 1/3 of the way down his back and around his entire neck. He has two drain tubes, one on either side of his neck and several stitches where the original injury, which is now the incision area, was. The vet found several more injuries upon further inspection. Bite marks on his paws and around his whole neck, bad bruising on one side of his neck/head, etc. The paws are because Ruben uses his paws like hands, and was likely trying to use them to defend himself. The bruising is from the dog bashing his head into the ground. Lovely.

They sent us home with antibiotics (10 days worth), pain meds and a collar (cone) just in case. We haven't needed the collar. He isn't eating much, but he's a night eater, so I am hoping that will change tonight. Last night he got chicken noodle soup, but I don't want him to think he will be getting that for the rest of his life!

Luckily he's not draining much at all so we are going back Friday to have the tubes removed. We have to go back toward the end of next week to get the stitches out.

He is pretty shaken up. He just wants to be held or lay around mostly, although he can be quite perky when he wants to be. We are staying at mom's today because we have a showing at the house so I have to walk him. He walks VERY fast which is not his normal pace. I sure he just wants to make sure he stays away from predators. Who wouldn't feel that way?

I'm sure his pride is wounded.

Brian was very upset to see Ruben all "fixed up" and really hasn't gone near him. The vet assistant talked to Brian about how he couldn't touch Ruben while he is healing because he could hurt him very badly. Brian either got it, or is just terrified of how the dog looks. Either way, it's made things easier on me.

Speaking of Brian, he had his hearing test today. He actually cooperated a little bit more today, which is good. I did not sit in the booth with him for the first time. It was my idea, but I was a nervous wreck not knowing what was going on. Basically his sound field test looked mostly the same as the last "good" test from last April. His bone conduction looked better. This probably means that his new tubes are doing an excellent job of keeping the fluid away. Yay!

They will retest in 6 months and see if he can be even more cooperative next time. One complication is that Brian has it in his head that he's supposed to open his mouth wide and say, "ahhhhhh" every time someone goes to examine any part of his face or head. I am thinking this may be a side effect from the dentist visit a few weeks ago. While really cute, it's definitely not a behavior that works well during a hearing test.

They wanted to schedule an ABR which requires sedation. The ENT had talked about waiting on this because he was so recently sedated (for tubes and adenoids) and I tend to agree. The ABR is not the best test-the booth is, so I would really rather avoid it if possible. We will just have to see how he does in 6 months and then decide.

We will also be visiting the developmental pediatrician (Dr. Wiley from 2 years ago) in August just to make sure we are on the right track with speech and that she doesn't see any other issues that need solving. It's just a part of the process at Children's. They always want to check from every angle-for which I am grateful!

So that's where we are with things. Ruben is healing. Brian's hearing is stable. I am still kind of a wreck about what happened to Ruben, but I will be okay.

Thanks for all of the emails and calls to check on Ru! And for weighing in on whether or not we should report the dog. Most people think we should report it, but wait until the bills are paid! I tend to agree.

Oh and we are just about done with doctors this week. I have to get a cavity filled tomorrow. Hopefully that will be uneventful!!

One Down, One to Go

Brian and I are home from his surgery (Shawn had to go to work). He had rough morning. He was extremely difficult. We ended up having to let them give him a calming drug before anesthesia! Thankfully it worked and we got his stupid bracelet on him (around his ankle). He never did wear the hospital gown and went straight for his IV as soon as he woke up. He' s a tough little guy.

The surgery went well and took about 25 minutes. He was really cranky in recovery, but calmed down once he got his lolly. That's exactly what everyone wants after surgery, right? A sugary lolly pop. Gross! Whatever works, right?

He has already been running around (only when he gets away from me) and eating since we have been home. Mostly we are just watching a lot of Smurf episodes.

Now we just have to get ready from Shawn's surgery next week. Sounds like fun, right?!

Surgery

It's official. Every one of us is having surgery this year. Brian gets new tubes next Friday. And an adenoidectomy. Shawn has his sinus surgery on March 10th. The new baby will be delivered via c-section, which kind of counts as surgery for him or her and definitely counts for me. Awesome!

It's going to be a busy few weeks. Monday I will be half way through my pregnancy! Tuesday we find out the sex. Thursday is Brian's pre-op appointment with the pedi. Friday is his surgery. The house is going on the market somewhere in there too.

Then the next week we start round two with Shawn's surgery. Oh the joy!

I really am glad about both surgeries actually. If BOTH boys would stop snoring I might get some sleep.

Christmas Wish

Dear Santa,

Here is what I want for Christmas. I would like for Brian to start talking in full sentences all the time. I would like to be able to understand every word he says. Then I could stop worrying about his hearing loss affecting his speech. I don't care if he talks all day and all night and drives me crazy. It would be better than the worrying.

I promise to leave cookies for you and celery for the reindeer.

Thanks,
Maria

I Forgot

I forgot to mention that the tube in Brian's right ear, which has been out for awhile, but sort of hanging out in his ear, has finally made it's way completely out of his ear. His eardrum has completely healed and there was no fluid in there! Yay for properly working Eustachian tubes! The left tube is still in place.

And since I'm posting, here are a few pictures from today. We decided to take advantage of the 70 degree weather!
And one more from last weekend. Some little man was not a happy camper when his Mom and Dad broke out the footie pajamas. Too bad little man, they're awfully cute! He clearly had adjusted to the idea by the time these pictures were taken the following morning!

Hearing Update

Today was Brian's routine hearing test. We waited a little bit over 6 months because Brian's audiologist Shana was on maternity leave.

Brian was not very cooperative. They say this is typical of two. They were able to get a pretty good sound field test in which he tested within the same ranges as he always has. No change is a good thing.

They were not able to test each ear individually because Mr. Brian wanted NOTHING to do with the earphones or inserts.

However, they were fairly confident that given his sound field test, and his "phenomenal speech and speech recognition" (THEY ACTUALLY SAID THAT!!), we have no reason to worry or suspect there has been any change.

They were also impressed by what he did do in the sound field test. They tried the games like putting money in a piggy bank every time you hear a sound, or putting rings on a stick. When they realized he wasn't buying it, they got out the picture books and asked him to point out different pictures. This is done over the speakers at different ranges. He did this like a pro! They said this is something they usually do when children are four or older. He even repeated all of the words as he pointed the pictures out.

This was not a huge surprise to me as this is what we do all the time with Brian's book. He's always loved his books. I was surprised that he knew what bar soap was! He didn't know what meat was, but that's not a huge surprise since he refuses to eat it!

Before we left I asked Shana if I am being too over protective of his hearing by not allowing Brian to go places where it's going to be loud. Sometimes I feel crazy because people act like I'm crazy for not allowing these things. She confirmed that I am being completely appropriate. Because of Brian's hearing loss, he is way more prone to further hearing loss than someone with normal hearing. She said they make ear molds specific to a person's hearing loss that protect your ears and when he's a little older, we can invest in those so he can do things like see a movie, or attend a wedding reception! Anyway, it was reassuring to know that I'm not totally crazy. At least when it comes to Brian's ears.

Waking Up

Brian only napped for an hour today. The garbage truck woke him up. THE GARBAGE TRUCK WOKE HIM UP! Yay for being able to hear the garbage truck!

Last week he woke up two mornings saying "choo-choo." I thought he wanted to play trains ,but Shawn knew better. The train tracks are close to our house, as I have mentioned before. The trains whistling woke him up. CHOO-CHOO!!!

Small miracles.

Welcome to Holland

A dear friend of mine sent me the above title today after coming across an old post on here. I googled it and found a wonderful story that fits my feelings perfectly. There's also a follow up story, "Celebrating Holland, I'm Home." Both put everything into words in a way that I am not able to.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Freedom

This 4th of July, I struggled a bit. It all turned out okay in the end, but I was pretty frustrated for awhile. I just couldn't stop thinking about how it was a day to celebrate freedom and our freedom was so limited because of a bad doctor.

When we arrived at the fireworks (actually on the 3rd in Chicago where we were), our family's friends had set up a nice area where we were all going to sit. Except there were speakers playing music. Loud music. So, of course, we couldn't sit there. Mom, Shawn, B and I had to move away from our family and their friends. This was the responsible thing to do. Why expose a child with hearing loss to loud music when you don't have to?

Then as the fireworks started, we had to move again. This time to the car. Even though we were WAY far back, the booms were much too loud.

When we first had to move, I said to my aunt, "I'm sorry, this is our reality." And it is. We have to do what is best for B and we do it at all cost. But for a moment, (actually about an hour) I was really upset about the fact that we have to do something different because someone else messed up. That's a lot to swallow.

Luckily B didn't mind, or even know we were moving to protect his hearing. I never want him to think it's his fault that we can do something, or have to do it differently because of him. He certainly can't help that this happened and I don't want him to feel the sadness and anger that I feel. I have felt enough of it for him over the past 2 years.

Two

Dear Brian,

You are 2 today. I can’t believe it! You have grown up so much in this past year. You are not a baby anymore. But you are still my baby. You are so tall and strong. You can run and climb. You can almost jump. You sing and dance. You count and talk. A lot. Sometimes too much. And it’s wonderful!

When you were first diagnosed with hearing loss, we were not sure if we would ever hear your sweet little voice. And we are so lucky that we do. We are so very blessed. You can even say “shh!” Ha ha audiologists!!

Brian, you have made our lives so much more full than we could have ever imagined. We love everything about you. You have so much determination and energy. Sometimes too much! And that too is wonderful. You will grow into an active and strong willed boy. We wouldn’t have it any other way.

You are sweet. You give the best hugs, kisses and cuddles. You are kind. You share. You are comfortable in any situation. You know little fear and very few strangers. You don’t “get” social norms and you don’t care. You are hysterically funny. And you know it. I love that you “get” funny.

I love to watch you read. And golf. I love the way you say “water” as if you are British. I love the way you say “monkey” and especially the way you say “me monkey” (my monkey). You really love those silly animals! I love that everything is a ball. Even olives and cherry tomatoes that you find in my salads. No big deal. I don’t like those anyway.

I have been so lucky to get to spend the almost every moment with you this past year.
I can’t wait to continue our adventures this next year. Our first trip to the beach is coming soon! More zoo trips, back to school in the fall, snow…

Happy Birthday, baby boy! I love you.

Mom

Hearing Test

Brian's hearing test went really well! They decided to change the way he is tested today to a more advanced test. In the past he has been conditioned to respond to a sound by turning his head toward it. When he hears the sound and turns his head an image pops up on a screen or a stuffed animal starts dancing in a lighted box.

Since he's almost 2, they decided to try to teach him to respond to sound by dropping a cube in a bucket, or stacking a ring onto a tube. Usually they would not start this until a child is 2, but Shana, our audiologist wanted to give it a whirl since Brian is typically responsive to new things and is "bright" as she put it.

From my point of view he didn't do a great job. He was kind of shy about it and then once he got more comfortable, he got kind of silly with it. He probably performed accurately about 3/4 of the time. They thought he did great though and were really excited about it.

Anyway, he tested slight to mild in terms of loss for both ears. The results were more like the results we were getting when he was very young and still testing with the ABR. This is GREAT NEWS! This reassures us that PE tubes were absolutely the best decision we could have made. Basically he has has fluid in his ears every other booth test until now and without the fluid, he tested at the same levels as he was testing early on. This means his loss has never really progressed since birth, which is AMAZING!

Shana fully agreed from the little time she observed Brian that his speech and language development is above and beyond on target. She said we will just keep doing what we're doing, which means another test in 6 months to make sure his hearing is still where it was today. This is also great news because I get SUPER stressed out by these tests, so limiting them to twice a year is so much better for me (and Brian in the long run)!! Shana actually said that if he keeps testing this way we will eventually only need to come once a year (probably once he turns 3). YAY!

We will actually retest in November because Shana is pregnant and won't be back from maternity leave until then. Between now and then we will see the ENT (in June) to check the PE tubes (both were still in an open today...right was not as open as left, but he has a runny nose on the right side, which probably accounts for this). That is scheduled for the day after B turns 2, June 25th.