Sunday, December 14, 2014

Lets communicate about communicating shall we....

Good evening world.

I thought I would make about Billy's cochlear implant and audio visual therapy progress.

Well the implants had their first stimulation in July.  I cannot believe how much time has gone by since then.  Since turning them on we have continued audio visual therapy (AVT) twice a week.  The point of the AVT therapy is to help him to start relying on his hearing and learning to listen.

 Initially, Billy was surprising everyone with how much he knew and understand.  Billy has auditory neuropathy spectrum disorder.  Kids with this disorder are different than kids who are completely deaf who get implanted because kids with auditory neuropathy have some type of hearing prior to being implanted.  For those who don't know, auditory neuropathy spectrum disorder is a hearing disorder which was allowing him to hear sometimes and not other times.  For example, when you are listening to the radio and it goes to static, you can hear some of the broadcast but it goes in and out.  Well that is basically what hearing is like for Billy.  There is a faulty signal somewhere in his auditory nerve.  The spectrum is so big and we do not fully know if Billy was on the mild or severe side.  After he was implanted it was obvious that he was hearing enough to connect some dots.  Additionally, since he has been implanted he has found ways to communicate that he did not have before.  That was our number one most important goal.

So Billy communicates in a way that his dad and I can understand his wants and needs most of the time.  People who spend a lot of time with him, like grandparents, therapists, etc. can also understand some of his communication.  I suppose it is accurate to say he has unconventional communication and some conventional communication.  Meaning that, the world around him that does not know him like we do does not understand everything he tries to communicate however does understand some.  His conventional communication skills are for sure growing, which is huge for us.  So here are the multiple ways Lil Bill communicates.

Billy still relies alot on his eyes for communication.  His CVI (cortical vision impairment, which is a whole other blog post) is pretty mild which makes it easier for him.  I would say his main form of communication is eye gazing.  For example, we recently got a dog named Roxy.  Roxy and Daddy like to play and wrestle alot.  Lil Bill loves watching them, he cracks up and thinks its hilarious.  When I am sitting with him he will start laughing at them and then look at me and then back at them and then at me again and I will laugh with him about it.  What he is really saying is, "mom look at them go how funny is that."

Lil Bill playing with Roxy

Another example happened just the other day.  Lil Bill and I were out shopping for a birthday present for Big Billy, we were looking at pajama pants.  I went through the isle and held up different options for Lil Bill.  He would look at all the options and then look at one and smile.  He did this repeatedly, and always picked the same pair of pants with multiple other options.  Occasionally I would ask him if he was sure, and he would say yea.  So that's how he picked out Daddy's birthday present.  They were bat man pajama pants by the way, in case you were wondering.

That bat man pants were a hit, Lil Bill and Daddy enjoying Daddy's birthday.

As I said above, Lil Bill said yea when were picking out a present for Daddy.  He is starting to use his voice more that is for sure.  With his low muscle tone in his trunk and neck, because of his cerebral palsy, it takes alot of umph to vocalize.  But boy does he try!  He has alot to say.  He says yes and no and also says mom and has said dad, and its safe to say all were meaningful.  He has said more, dog, cat, hi, bye, and bubbles.  All were are appropriate times however he does not vocalize any of those words on the regular.  He is really master waving bye bye though.  If someone says bye bye or he sees someone wave he lifts him arm right up and waves his hand.  When he first starting doing this it took him alot of time to get his hand up because of his arm being so tight because of his cerebral palsy.  But he is becoming very quick with it.  It just melts my heart.

He also has done some ASL (signing).  Not much though.  His cerebral palsy does make this difficult.  But he has signed eat, more, mom and dad.  He is also responsive to these days as well by saying yes or no.  As you can see he wants to communicate so bad that he is utilizing a little of everything to get there.  Others noticed this too, so all thought why not give him one more way.

Recently he was evaluated for a communication device.  He was a rock star during the evaluation.  During the evaluation they used a computer that was hooked up to a switch.  To operate the computer instead of having to use a mouse or a keyboard, he could just hit the switch.  The switch allowed Billy to be involved in everything.  They say songs that required Lil Bill to select the right animal, and he did almost every time!  They also had a switch that helped him read a book.  He was so happy and proud of himself.  He was smiling and laughing with everyone in the room.  I wanted to cry, he was so happy and so proud of himself in a way I have never seen before.  Some of the professionals that are involved with Lil Bill I feel are such blessings, they are working with him and giving him access to communicate and be part of the world around him, and he was loving it and I will always be grateful to them.  At the evaluation they picked out the communication device they thought would be best for him.  We are waiting to try it at home, the communication device is similar to a tablet.  It will have different options to chose from.  Billy will touch the option he wants and the tablet will vocalize it for him.  There is a place that is close to us that loans out adaptive equipment and technology.  We will be getting one on loan, hopefully soon, and if it works well for Lil Bill we will go through the insurance process to get one of our own.  I can't wait!  We have been using one in our AVT therapy sessions the last couple weeks and he is doing great.  Positioning him in a good spot so he is able to physically operate the tablet is our biggest struggle.  It is hard for him to bring his arms up due to his CP.  Positioning is also important because of his CVI.  So positioning Lil Bill in a spot that he can move his arms easily enough to operate the tablet while keeping the tablet somewhere he can actually see it and see the option he wants to hit is not easy.  I am not going to lie, it is extremely difficult to find a good position and spot. But I am very hopeful we will get there.  No doubt in my mind we will find a way to make it work so Lil Bill can use a device.

After seeing how happy it made Lil Bill to operate the switch, Santa is bringing him some switch adapted toys!  These adaptive toys are pretty expensive so I am determined to figure out how to adapt them myself.  In the meantime I found the cheapest website I could, where we purchased a switch, a battery converter, and two already adapted toys.  One of the toys will also react when Lil Bill vocalizes which is so great too!  We are planning on using the battery converter to adapt a battery operated toy that we already have at home.

All in all, Lil Bill is doing so amazing from this stand point.  I remember how scared I was about making the decision to get the cochlear implants.  I didn't know if it was the right thing to do, I didn't know if they would help him.  Now, I can't imagine if we didn't get them.  We never would have known how much he knows and understands.  With all his other limitations it was hard for him to express to us what he was understanding.  I think about that all time.  If we never would have gotten them we never would have known how smart he is.  I mean I thought he was smart, but he is really smart! I am so excited to see him take off after we get the communication device.

Monday, October 20, 2014


Yesterday we went out to a couple stores to find Lil Bill a Halloween costume.  While we did not come home with a costume we came home inspired with ideas. While we were at one of the stores, this little girl, about 6 or 7 years old, came up to me and asked the following question, "Is that a wheelchair?"  The question caught me off guard.  I barely responded with a yes before her mom yelled for her to come with her.

Being out with Lil Bill sometimes brings a lot of attention, a lot of unwanted attention sometimes.  When Lil Bill was still a baby and on oxygen, a man actually ran into a sign because he was staring at him.  When Lil Bill had a ng tube (feeding tube) people used to stare.  Sometimes they would make comments.  One time a lady asked me if he was ok.  Another time a kid yelled in the middle of the store, "Whats wrong with that baby?"  His mom yelled at him to come to her, she didn't want him to wait around to hear the answer.

The answer is nothing.  Nothing is wrong with that baby.  That is why I felt obligated to write this post.

You see, these kids I referenced above asked their questions out of innocent curiosity.  While the second child could has asked their question a little nicer, I surely believe he meant no harm.  These children noticed there was a difference between them and my son and wanted to know about it.  When Lil Bill had first got his ng tube (feeding tube), the kids who came in contact with him the most were the first ones I had to explain it to, like his cousins and our friends children.  When they asked what it was, I used to tell them the tube helped him eat.  A common response was, 'that's so cool!'  His hearing aids and now his cochlear implants brought and brings similar questions.  I try my best to give age appropriate responses, and the funny this is, these young children, are so understanding and accepting of that response, of my son and the differences.

That is really all I want.  More importantly, that is really all my son wants.  So why are these children getting yelled at for being curious?  Why does it feel like the norm in our society to act on sheer ignorance to avoid those questions and pretend there is no difference.  Or worse, pretend we aren't here.  Having these questions answered is the first step to helping children look at the similarities rather than the differences.

If I could go back to the young girl yesterday, I would invite her mom into the conversation.  I would tell them that yes, it is indeed a wheelchair, even though we prefer to calling it his seat.  However no matter what we do or do not call it won't change the fact that he currently cannot walk.

And yes, these things on his head are cochlear implants, they help him hear.  He can hear you, so be nice.  He wants you to talk to him.  He wants to talk back to you.  If you are patient enough you will see that he is trying to communicate with you.

Just because he is in a wheelchair or seat, and just because he can't talk doesn't mean he is not like any other typical two year old.  He still thinks his daddy is the best thing that ever happened to the world, and he loves nothing more than falling asleep cuddling with his mommy.  He loves playing ball and will play it with you if you help him.  When buying clothes in the store, if he is give the option he will choose yellows and oranges.  When showed different colors of options to paint his room he picked green.  He recently chose batman over ninja turtles, however he does enjoy them too.  He loves listening to the marching band, he loves most music actually and will for sure let you dance with him.  He loves dogs and cats and generally, they love him too.  Like many other toddlers, Sponge bob is his favorite show.  He loves going swimming, he could stay in the pool for hours.  He dislikes veggies and loves chocolate.  He loves giraffes and alligators and is scared of the dark.  Bubbles amaze him.  I could go on. 

But if children are brought up in a society where its more appropriate to ignore the difference, they will never know this.  If they are told don't ask that, guess what? They won't.  So moms, dads, do not stop you child from asking my son about his wheelchair or seat, actually promote it, in a kind manner of course.  Otherwise your ignorance will turn into their ignorance which will never turn into inclusion.  And that is all my son wants, to be included.  Even if it is just sitting in the circle with all the other kids.  Because if you read the above paragraph at all you'd see your children and my child may have some common interests.

We are so grateful our families and a a few close friends are raising their children to ask questions and share acceptance.  These adults and children will go above and beyond to include Lil Bill, to play with Lil Bill, to cheer for Lil Bill.  They see him as a two year old.  They see him for who he is.  They have fun with each other and play with each other, like children are suppose to.  So is that too much for the world to do?

Friday, August 15, 2014

He can't talk but has so much to say...

Well things have been very hectic lately.  I wanted to update sooner about Lil Bill's progress with the audio visual therapy and the implants, but better late than never.

Lil Bill is doing SO amazing in therapy.  His audio visual (AV) therapist said he is doing unusually good and they do not expect any kids, with or without any other limitations, to do what he is doing this early on.  She has been so encouraging for us.  She brags so much to everyone we see when we are with her how smart Lil Bill is.  She is opening up so many doors for us.

She is interested in trying Lil Bill with an eye gaze machine.  An eye gaze machine is a communication device that will allow Lil Bill to communicate his wants, needs, etc.  I honestly am not 100 percent sure how it exactly works.  What I do know is somehow it reads what Lil Bill is looking at and says what he is looking at.  It is a computer with a screen.  Initially it will start out with pictures, than simple phrases, and then can get very detailed.  I saw some pictures on the internet of key boards and people can just 'type' out complete sentences and so on.  Pretty amazing technology I will have to admit.  The therapist brought in another therapist from the communication device team into one of our sessions to get her opinion.  That therapist agreed that Lil Bill is extremely bright and would totally benefit from this.  The AV therapist spoke with a couple over professionals who are familiar with Lil Bill and with me and Billy and we all have agreed to go for it and give it a try.

On one hand I am a little disappointed.  Getting my precious baby boy an eye gaze machine to communicate because he can't talk yet?  Are we giving up on him?  It makes me so sad.  However I went through this same mindset when we got him a stander, and a wheelchair stroller, a bathing chair, and a feeding and activity chair.  All of these items have dramatically increased his quality of life.  He loves them!!!  I guess it is normal to grieve.  Lil Bill's childhood is turning out to not be typical.  Just like his birth, just like his infancy, just like everything else that led him up to where he currently is.  But he goes through it with such grace.  He is so happy.  We were at the hospital today for a sick appointment (he got sent home sick from daycare) and the nurse asked if he was always so happy.  The answer is yes! (Unless he is sleeping, then he screams literally the entire night, but that is a completely different story)  So I try to listen to the other side of my brain when it comes to my perspective of this eye gaze machine.  That we are giving my son the opportunity to communicate.  Communication is essential to quality life.  With all his limitations he has already found ways to communicate! He is dying to let the world know what is going through his head.  He cannot talk but he has so much to say.  Can you imagine how that feels??  This device would probably overjoy him!  And the AV therapist assured me that no one is giving up on the hope that he will verbally communicate one day.  She said that why should his communication skills stop developing while his language skills are trying to catch up.  And that made alot of sense to me.

I read a book called Out of My Mind by Sharon Draper.  It was the first book that I had finished in years.  I cried so many times while reading this book.  It made me laugh, it broke my heart, and it gave me a better understanding overall.  It is about a girl that is about a preteen's age.  She has Cerebral Palsy just like Lil Bill and she can not talk.  She finally got a communication device that allowed her to talk, she triggered it with her thumb.  She finally got a chance to voice her thoughts, opinions, feelings, and beliefs.  And she got a chance to show everyone how smart she was.  Just because a person if physically limited, does NOT mean they are cognitively limited.  I fear that this misunderstanding will cause Lil Bill to have many struggles.  While I am here I will not stop advocating for him no matter how hard it gets.  I can not wait until my baby boy can call me mommy.  Whether he says it out loud, signs it, triggers a machine with his thumb, or with his eye.  I am 100 percent sure it will happen.  And I am sure I will cry the first time and then become overjoyed with gratitude.  Yes I am positive this will happen!!  Anyway it is a good book.  I recommend anyone and everyone to read it.

We also had an appointment with pulmonology last week.  Lil Bill has been doing so well respiratory wise I couldn't wait for his pulmonologist to see it.  Since he is currently doing so well, his pulmonologist thought it would be a good idea to talk about the possibility of Lil Bill needing a trach in the future and for him to set up a meeting with us, him, and the hospital's palliative care team.  Of course I could not believe this conversation was happening!  Lil Bill has been doing so well lately.  The doctor assured me that palliative care does not mean what it used to (end of life care).  After speaking with other people and using good old Google I can concluded that he is right.  It does not mean what is used to.  It is now more supportive services.  If we are admitted to the hospital, they would be involved in our care.  If we have any questions, equipment needs, etc. they would be there to help.  If the time came to make a decision about a trach they would be walking us through it.  The pulmonoligst said that it is better to meet them when Lil Bill is doing well as opposed to meeting them when we are in a crisis situation.  After doing some thinking I suppose he is right.  Just when I think we are doing so great I get a reality check that there could be another time in the future that we are not.  Ugh.

And now Lil Bill is sick again.  Has been throwing up non stop for at least a week, getting more and worse over the last couple days.  He spiked a fever of 102 today and has lots of congestion.  He has some other issues going on.  He is severely backed up (if you know what I mean) and we will be in day medicine at the hospital for a good 10 hours on Monday to fix this problem (hoping for a very crappy day ;)  )  So primary care told us to touch base with them Monday if he is still throwing up after all is said and done and if so then they will run other tests.  In the meantime they gave us meds to use this weekend to give this a jump start. one could have ever ever ever prepared me for motherhood.  No one could have ever prepared me for all these doctors appointments, surgeries, getting puked, peed, and pooped on, and sleepless nights every single night for at least a year now.  And I do not care what anyone says, you do not get used to no sleep.  I feel like the people who say that you get used to it, are the people who are sleep deprived for like 2 or 3 months while their baby is a new born.  Not the ones who are up every night most of the night with their screaming toddler.  I am hoping this clean out will help with that too, otherwise we are off to diagnostics to figure this out!! While no one could have ever prepared me for this stuff, no one could have ever prepared me for the unconditional love I would have through out it not mind, to show up for all of it because I want to.  There is no greater love than the love I have for my child.  Our story is not typical but it is ours and it is beautiful.  Lil Bill has a wild personality already, and I cannot wait to see the young boy he turns into.

Wednesday, June 25, 2014

Happy cochlear implant day!

First, I am entirely to tired to spell check or proof read..FYI!!

I thought I would update in some detail about the cochlear implant surgery.  Lil Bill got the surgery this past Friday!  We are patiently waiting for them to turn them on.  July 14th they will do an initial stimulation.  I cannot wait to see his response.  Some videos I have seen of babies and toddlers hearing for the first time have such great responses.  By great I mean laughing and smiling so big or screaming and crying.  I think Lil Bill may be closer to the smiling than crying but if not it wouldn't be the first time he has surprised me!

So the night before surgery I could not sleep at all.  I was filled with so many emotions.  I was scared, anxious, excited, nervous, sick to my stomach, confident, just to name a few.  I really do not know how to put it into words exactly how I felt.  I mean, imagine, how you would feel if your sweet child was going to be getting a surgery that will allow him or her to hear clearly for the first time? Who am I kidding, I never could of imagined what half the shit in life that I have ever been through would feel like until I really went through it right!?

We got up for the day around 5 am.  Billy and I got ready while Lil Bill snoozed.  For those of you who know us, know we enjoy to make Lil Bill's doctors and nurses laugh or smile.  His first Halloween in the NICU we dressed him up in a Build A Bear Incredible Hulk Outfit.  His first Christmas in the NICU we put him in a onzie that said a gift to all the ladies (Thanks Mere!) and put him in a wrapped Christmas Box.  We thought it would be only appropriate to dress him in doctor scrubs for the day of his big day!!  Of course everyone got a kick out of it!

After getting to the hospital, I just wanted time to drag on.  Lil Bill was so happy, loving all the attention everyone was giving him and just playing and laughing.  They ended up giving him a sedative before they took him to the OR to give him general anesthesia and do the surgery to help keep him calm.   After a few minutes he looked pretty high, for lack of a better time, and began laughing even more.  I couldn't help but think, my poor baby doesn't know whats coming for him.  After we said our 'goodbyes' and they rolled his bed out he looked back at us, with this look like, 'what, you guys aren't coming.' It broke my heart.

The surgery ended up taking 5 hours.  It was probably around six hours before we saw him though.  For all the time I spent on my phone and tablet I can not tell you one thing I accomplished.  I kept walking around aimlessly.  Billy's mom and my parents were there waiting with us. 

Two surgeons performed the surgery on Lil Bill.  About 4 hours in one of the surgeons came out.  After they put the cochlear implant in they test it to make sure it works.  The doctor was explaining to us that a couple of the electrodes on his implant were not working properly.  They keep back ups in the OR with them say they were able to take it back out and put a new one in.  I asked him how often this happens and he said 'In his 20 years of doing this neither of them have ever seen this happen'  Figures Bill would be the first one! I am very grateful they continued to keep testing them even though they had never had one that never worked!  Here is a picture of the actual implant.  Next to the implant is a nickel.  Honestly I had pictured it much smaller before I saw it!  There are three different companies that you can get cochlear implants from.  We chose the Nucleus 6 from Cochlear, which is the picture below.  Anyhow they put the new implant it, tested it, and it worked fine!

When they finally told us we could see Lil Bill we ran back.  He was still half out of it.  He had a big old bandage on his head.  The nurse, Billy and I, decided he looked like Princess Laya, poor him! Overnight when a different nurse re-wrapped it several times her and I came up with several other names for the turban I mean bandage as well!  Here is a picture of the bandage.  This is of course much later in the day.  My happy boy doesn't let a little pain bring him down.

When we were admitted for our overnight, as soon as we get up there Lil Bill started crying because we layed him down to change his diaper (we are just awful parents).  When he cried he held his breath and turn colors and dropped his stats to the low 50s.  See this doesn't phase Billy and I anymore.  We have seen him do this countless times in the hospital or at home, we have intervened countless times, watched the staff intervene countless times, and he always brings himself back up.  Well, every time this happens in the hospital, the staff doesn't share our calmness, naturally of course.  So right away about 10-15 people came running into our room.  Quickly asking our questions, looking at him, telling others what they needed to use on him, yanno, the works.  Every time this happens I feel like I have to explain my calmness.  Saying, he does this all the, i think he will be ok, he was just upset, on and on and on.  They ended up deep suctioning help and blood came up.

Immediately I flashed back to the early days in the NICU, when they deep suctioned him and blood came up and they were really worried about him, like it really didn't look good for him.  The respiratory therapist, doctors, and nurses did not seem to share my concerns to much.  They said it was probably because of the breathing tube or the deep suction.  For those who do not know when they deep suction they go up your nose and all the way down your throat.  Crazy how quickly I can flash back to experiences with Lil Bill.  I have to ground myself and remind myself that we are in different times and very different circumstances

In the midst of all this happening, Lil Bill was laying on the bed screaming in pain.  When he screams he often ads an M to the front of this.  So when he was screaming it sounded like he was screaming 'MAAAAAAMAAAA'.  One of the several people in the room with us said aw hes screaming Mama.  I don't think he meant to maybe he did, but my heart was breaking.  For a couple seconds I actually regretted doing the surgery.

Everything became ok as I assumed it would.  Throughout the night in the hospital, one of the times Lil Bill fussed and I went over there I saw him laying in a big circle of blood on his sheet.  Right away I thought it was the incisions.  Seconds later I saw it was his nose.  I called for the nurse right away who called for the doctor.  Internally I panicked.  Every time a patient in the show House has a nosebleed it is never good!  Well what I wish someone warned me about is that nose bleeds are completely normal and somewhat expected after surgery involving the ear.  Keep that in mind!

So Lil Bill seemed to be doing ok the next morning.  We were discharged and able to go home.  I was so relieved.  Whenever we go into the hospital I get his fear that they are going to keep us longer than planned.  We came home and everything was going smoothly.  Lil Bill was in pain but we were managing it.  Until the next morning.

Lil Bill started vomiting everywhere, coughing uncontrollably.  Something just did not seem right.  This continued to the next day and the cough got worse.  I called the ENT office, since they did the surgery.  I did not think it was surgery related but I thought better to be safe than sorry.  They told us to come in the day we called  and they checked him out.  On the way there, listening to this cough, all I could think was this sounds like the cough he has when he gets pneumonia.  The ENT doctor checked him and ruled out anything surgery related.  That relieved me, and they said his incisions look good, which also relieved me.  Here is what his incisions currently look like.

ENT did want us to see our primary care doctor or pulmonologist before we left the hospital, because they are both very familiar with Lil Bill and how he sounds.  We went down to our primary care first because our pulmonologist was not on that day and I wanted him to get seen by someone who knew what he sounded like at base line.  Our primary care doctor was not on, but lucky for us the three doctors who were on were very familiar with Lil Bill.  Everyone is the office there is familiar with Lil Bill.  Unfortunately its because we have been there so much this past year.  They knew it was him coming by his horrible cough before we even got there one lady there said.

Our primary care office is so great to us and I am so thankful for that.  They got us in to be seen.  All of the doctors on listened to him and evaluated him.  One of the doctors is a resident.  When Lil Bill was in the NICU she was doing her residency there so she knew him and treated him there. She now does her residency at the hospital.  We have seen her in primary care, in the ER, while we were impatient, and now this time.  I really did luck out on getting seen by a doctor who was familiar with Lil Bill.

Well my fears were confirmed, it's pneumonia.  It could have been brewing prior to the surgery and Lil Bill was showing no symptoms of it.  Or when they were intubating him for the surgery it is possible that the tube knocked some blood of mucus into his lungs and he got it that way.  Either way he has it and it sucks.  My poor baby it is the 4th time in less than a year, and days after surgery, my heart has been broken watching him.  This is definitely his worse case yet.  Billy and I are also getting the energy sucked out of us.  While I know my baby is going through it, it is exhausting for all of us.

Lil Bill has been coughing non stop, literally.  Yesterday consisted of a 24 hour coughing fit.  We have a cough assist to use at home with him when he is sick.  A cough assist is medical equipment machine that blows air pressure into him and than sucks it all out hard and quick.  It is great for getting up the mucus.  But since he just got the surgery, ENT advised us not to use it for a couple weeks.  Nothing is helping him, none of the three breathing treatments, not vics vapor, not a vics humidifier, not machine suctioner.  It is so hard to see him like this, this is definitely his worst pneumonia spell.  He is on a very strong antibiotic and I hope it makes him better soon.  We have oxygen at home that we have been using with him.  He finally got a solid 5 hours of sleep last night with it.  I am very grateful with have the oxygen at home, otherwise we probably would have been admitted to the hospital again by now.

Today he does seem better than yesterday, still in bad shape though.  He has been crying uncontrollably all day, doesn't matter what you do.  I gave him some of what I am calling 'special Tylenol' aka Tylenol with codeine because the reg Tylenol was not stopping him for screaming at all and we still have the ok to use it as needed from the surgery.  I think his entire body has to hurt from coughing so bad all day yesterday.  I really thought he was going to end up with a broken rib.  But he didn't.  So I think we are now turning up hill, knock on wood, he has eaten much better and more today, is not coughing nonstop, just crying.  But since I gave him the special Tylenol he has calmed down and is taking a nice long nap.

Ok so YAY you made it to the end of this long post!  This is our story of our cochlear implant surgery.  A surgery that is going to change Lil Bill's life!  So July 14th is the day to look forward to folks!! I cannot wait!!!

To end this post on a happy note, he is another picture of Lil Bill with his daddy, Billy.  This was Lil Bill's first 'real' hair cut.  His daddy cut it two nights before surgery.  We thought they were going to shave his hair a bit.  Billy wanted to give him a mu hawk cause of that.  I am glad we did not because they didn't shave any of his hair.  But he still looks so handsome with his hair cute! Love my Bills!

Thursday, June 19, 2014

I can't help but feel like I am grieving Lil Bill's hearing.  This past, everything we did, I couldn't help but think, 'oh this is one of the last time's Lil Bill will hear this.'  Don't get me wrong, I know the implants will allow him to hear.  I guess I have this undeniable fear that he hears better than we think and the implants are not going to compare, or the implants are not going to work.

It is interesting to me my reaction when we heard the news that Lil Bill had auditory neuropathy.  We were told that hearing aids typically do not help with auditory neuropathy and cochlear implants do.  Seconds after hearing that I thought 'ok lets get the implants tomorrow!'  I had no fear, I just wanted my baby to hear.  Of course nothing is that simple.  We had to go through months of trial with the hearing aids, we then had to wait and see if Lil Bill would start developing any language to see how severe his auditory neuropathy is.  We had to go through several scans and tests.  This fear that I have was not present during any of that.  Funny how that happens.

I cannot believe the day is tomorrow.  I have so many emotions.  I am scared of course, I would rather my baby didn't have to go through surgery.  I am excited because of what the cochlear implants could do for him.  Nervous because well its surgery, and we will be adopting a whole new way of life into our lives.  I am very emotional and could cry.  All the time and effort that Lil Bill, Billy, and myself, and even grandparents on both sides put into getting to this point and its finally hear.  All the appointments we all went to and babysitting and transportation the grandparents helped out with, we all made it happen.  And other family and friends who have offered there support has been irreplaceable.

 While I do feel like I am grieving the life that has happened BC (before cochlear implants haha) I feel equally as excited for the life that has yet to happen.

I just really don't know what else to say.  The day we have been waiting for is finally hear.  I just can't find the right words to describe my feelings.  Please send sweet prayers and positive vibes our way tomorrow.  We have to have Lil Bill at the hospital at 6:30 am.  Surgery will take several hours and then we are suppose to only be in the hospital one night for observations.  Hopefully everything will go smoothly and we will bring Lil Bill home Saturday to finish the rest of his recovery in comfortable surroundings!

Thursday, June 12, 2014

The road to getting here..

As I sit here while Lil Bill is taking his late night nap, a nap that I secretly love because he sleeps more quiet than he does at night and its sometimes the only time I get to myself throughout the day.  I sit here, anxious and nervous for whats to come.

This time next week I know the anxiety feelings will be amplified but I can't help but feel them now.  Decisions I was confident about I am now second guessing, I am becoming worried, wondering if this is the right thing.  Lil Bill's cochlear implant surgery is a week from tomorrow and I am thinking entirely too much about the actual procedure and the potential outcomes.  Last night Billy and I were watching House, a show we love and never ever get sick of, and we watched one of the doctors on the team drill into a patient's skull.  Billy then said to me, 'I can't believe they are going to be drilling into Lil Bill's skull.'  I can't believe it either, honestly I never thought about it, I still can't bring myself to think about it.  I called one of the surgeon's physician assistant today and asked her several questions about the procedure.  It was like, I was not present during our previous visits with both surgeons.  But I was.  How could I elect for an optional surgery that requires two mad men, or surgeons should I say, drill through my little boy's skull.  How could I have not processed all of this information?

This man's been busy!

The road to get where we are now, to one week away from Lil Bill getting bilateral cochlear implants has been a long and mentally draining road.  We met with so many people.  We met with both surgeons, at two different appointments.  Contrary to what I just stated, I do like them and do not believe them to be mad men.

We met with the speech therapist who will be working with Lil Bill and us twice a week for at least the next year to help Lil Bill learn to listen with his new implants.  She will be doing AV therapy (audio-visual) with us throughout that time.

We met with a social worker who made sure we did not need anything to help us keep our commitment to the year long therapy.  We met with the cochlear implant coordinator to make sure we were educated and helped guide us through everything.

We met a new audiologist who is a cochlear implant audiologist who accessed Lil Bill and will be the one handling his mapping.  Mapping refers to channeling the cochlear implant and working with its settings.

We met with a genetic doctor to rule out serious genetic disorders that could of caused this type of hearing disorder that Lil Bill has.  That doctor was able to rule out those specific genetic disorders.  However she was not able to rule out all genetic disorders.  So we went through with genetic testing.

The genetics doctor thinks its a possibility Lil Bill has Kabuki syndrome since he is showing at least five traits of it.  Its a rare genetic disorder and can account for some of his medical issues and developmental struggles.  All of Lil Bill's medical issues and developmental struggles can be blamed on him being born 17 weeks early, which in turn left him with brain bleeds and brain damage which left hi with cerebral palsy among other diagnoses.  All of his doctors believe this to be true.  This genetics doctor is bringing a different perspective.  Maybe he also has a genetic disorder.  I am trying not to think too much about it, he likely does not have it.  If he does, I can only imagine the stress of trying to figure out what is from Kabuki and what is not.  I can't find the write word to express how I feel about Lil Bill being almost 2 years old and he is still a puzzle trying to be put together.  Anyhow we are awaiting the test results.

Lil Bill during study. Was taped down to table but wanted to play most of the hour long test!

In the midst of all this, we still had our usual GI appointments, which lead to a gastric bypass emptying scan.  The scan showed that Lil Bill's acid reflux is more severe than we thought.  It showed that his sphincter in his esophagus does not close, it remains open.  So his acid reflux is constant, even if it does not actual come all the way up.  The GI doctor thinks this may be why Lil Bill screams in his sleep all night.  Three new meds were added last week, keep your fingers crossed we all get a good night sleep soon!

Lil Bill in his stander, working them legs!

Our routine neurology appointments called for and EEG for concern over seizures.  Well this brought unusually good news for Lil Bill, NO SEIZURES! Gosh I just love when his test results come back with the word normal in them.  Our neurologist thinks Lil Bill's legs have made  lot of progress.  He said if his legs can change the way they have, he is hopeful that his upper body may be able to too.  He suggested treatments like bot ox, which is often used for spastic cp, which Lil Bill has.  We are interested in this but it is not our primary concern at the moment.

Our pulmonary appointments haven't been horrible.  Lil Bill still has had another run with pneumonia, which he won woo hooo.  Still on the same meds for his lungs, still have the pulse ox, c pap, oxygen tanks, nebulizer, and now have added a cough assist machine to the mix.  Lil Bill is not a huge fun, but it works amazingly!!I

 In the midst of all that, Lil Bill has also started working with an organization called deaf/blind.  Lil Bill was working with an organization that worked with the deaf and hard of hearing.  However, there are vision concerns from some people who work with him.  The concern comes from how well he is processing what he sees from his eyes to his brain, this processing disorder is called CVI (cortical vision impairment). Lil Bill's new teacher gave us a good way of explaining CVI.  It is kind of like looking at a Where's Waldo book when looking at different things or people throughout your day.  So we had an IFSP meeting and transferred services to statewide services for the deaf/blind.  So far his new teacher does not think he has a severe case of it.  Her and some of his therapists are trying to sort out if he has CVI or if this is related to his motor skills.  Again, that puzzle I am talking about.

All of this lead us to this point.  A week out from the cochlear implant surgery.  So I did not remember a few details about the surgery, justifiable you think?

And now, where I a now, which is second guessing.  This surgery is an optional surgery.  Billy and I believe that it will enhance Lil Bill's life.  So do all the professionals we have met with.  But what if it doesn't.  Lil Bill can hear now; he hears static and doesn't hear clearly but he can hear.  These implants will take away all of that.  What if they don't work right?  What if Lil Bill's auditory neuropathy is not as severe as we think and he never really needed them? I wish there were some way to know.  I wish I could ask him and let him decide.  It is his hearing and it is his body.  As a mother I suppose it is natural to worry if I a making the right choices for my son.  I know it is my job to make these decisions, well mine and Billy's.  And together I feel as though we do a good job researching information, meeting with the doctors and therapists, and talking to families' who have been where we are and then taking all that information to make the best choice.

It still doesn't make it suck any less.  Lil Bill is so happy.  I do not want that happiness to go away because of a bad choice we made.  Sometimes I wish the important decisions that were put on us, were not this big.  Sometimes I wish this was a little easier.  But this is our life and our situation could be a lot worse.  As I said Lil Bill is so happy.  All the time, he truly is.  If anyone has a reason to be angry or upset it is him and he just wants to have a good time all the time.  That is a huge blessing itself!  I think we will be OK.  The anticipation is always the worst part!  Our new normal is going to be beautiful, I really do just know it!

Lil Bill in his new wheelchair/stroller, just living it up.

I am so grateful that we are so close to such a great children's hospital with such a great cochlear implant team. Lil Bill could not be in better hands and I am so glad they are on this journey with us.

Friday, March 7, 2014

Is unnatural natural??

Today we met with the cochlear implant coordinator, one of the surgeons, and two other doctors to discuss Lil Bill and the possibility of him getting the implants.  Billy, Lil Bill, and I walked into the room and all four of the cochlear implant team members were sitting in there, waiting for us, we were not expecting it to be so many people.

The appointment was very informative.  As you may or may not know there is controversy about the cochlear implants.  Both sides have very strong opinions on if they are right or wrong.  So I was a little nervous going into this appointment, meeting with the cochlear implant team, that we would receive bias information.  I was pleasantly surprised when that was not the case.

The surgeon asked us what our goals were for Lil Bill.  He talked to us about ASL and the culture of the deaf and we explored that option.  He then talked to us about the implants and what that would be for Lil Bill.  We discussed our fears of relying on only ASL.  Due to Lil Bill's spastic quadriplegic CP, he is very tight.  His arms are more affected than his legs.  We believe relying on signing as a main means of communication has the potential to be very difficult for him.  That was initially our motivating factor for wanting the implants.  It was not because I didn't feel like learning ASL and adapting to my son, because we are still open to learning it.  I just think every family's situation is so different.  Some families may chose ASL and not want to get implants, and I think it is great for them, that is their choice.  However for our family, we think what would be best for us is to get Lil Bill the implants.  And that is our choice and we are OK with that.  It is all about people's circumstances, and everyone has different ones.  So I was happy that the surgeon took the time to explore all options with us.

I keep thinking about something the surgeon said.  Billy told him that he thinks Lil Bill hears more than we give him credit for.  The surgeon said, that he certainly does hear.  But due to his auditory neuropathy, he hears static and it is all mushed together.  He does not hear what we hear when we talk to each other.  He currently does not process language in such a way that he can understand it.  He said that if he hears mush, he will speak mush.  That actually made me feel better and hopeful.  Lil Bill really does try to talk but does not have much of a vocabulary.  He has said mom, and actually said dad today for the first time! :)  But he does not say either regularly.  When he stops hearing mush, he will probably stop speaking it.

Now before saying what I am about to, keep in mind we still need to have an MRI, a cat scan, and genetic tests throughout the next month to officially qualify Lil Bill to be an official candidate for the implants, but the team agreed today that Lil Bill seems like a great candidate.  With all the medical information they presently have and from watching him, they think he would do really well with the implants.  They kept saying today that he tries to communicate, he is very vocal and has such a strong desire to interact.  He really does, he is truly a people person, he must get that from his dad! ha!  It was also relieving to here that they do not believe some of Lil Bill's other issues will hold him back from talking verbally (such as his left vocal cord paralysis).  While he does have other limitations, they are remaining positive so I am as well!

I was also very surprised that they said the cochlear implant surgery will only take about 2 1/2 hours.  Then they said if all goes as planned, Lil Bill will only be in the hospital over night.  I imagined him being in the hospital recovering much longer, that is what I read on the internet (SO HEY IT MUST BE TRUE
RIGHT? (;   ) After the surgery, they will turn the implants on 3 weeks later.  They wait so long because the area around the implant in tender and if they turn them on right away the sound waves could cause pain.  They do not want him to associate sound with pain.  Our last tests are done April 15th and if everything comes back ok, they said Lil Bill will be getting the implants in May.  That seems so far away and so close all at the same time.

I have never been so scared about something.  I mean after today I feel like the chances of the implants working are really really high.  But the anticipation is always the worst.  Billy and I were talking today about Lil Bill's first surgery.  It was the PDA ligation (heart surgery to close a valve in his heart) when he was only 2 weeks old, he was not even a pound and a half.  Well we had not time to go through the anticipation.  We went into the NICU on a Friday morning to visit him and they told us the surgery was going to be done later that afternoon.  That was also the first day I ever kissed him.  The surgeon was telling us about the risks of the surgery (including death) and right after that they asked if we wanted to kiss him.  It was the most terrifying and beautiful experience.  Never how I imagined giving my son his first kiss, but it is our story.  It is amazing that there is a surgeon willing to operate on such a tiny baby's tiny heart.  We saw the scar afterwards and we couldn't believe how little it was, and that they performed heart surgery through an incision so small. Technology is truly amazing.

Before deciding we were going to get the implants, a reason I did not want to get them was that it seemed unnatural.  But then it hit me, what about Lil Bill's story is natural?  Even going back to my pregnancy with him.  Having to get a cerclage, a pessary, and weekly progesterone shots.  Then after he was born, being put on a ventilator immediately, and staying that way for 12 weeks.  Several surgeries, and machines were keeping him alive for months.  He was on the jet ventilator for a long time.  The jet ventilator pumps 420 breaths into the person on it per a MINUTE.  What the hell is natural about that?  So if we wanted to stick to things that were only natural, honestly Lil Bill probably would not have survived long enough to have the option to be saved.  My weak ass cervix would have done it what was naturally trying to do weeks prior.  Just like what it did with our first pregnancy with Aiden.  We have always used the technology and resources available to give Lil Bill the best shot.  So why stop now if we believe this is the best shot for him?  Unnatural is natural to us.

So our plan is to stay in the day, not worry about May and the surgery until May and the surgery gets here.  I am just going to enjoy my baby boy, and his happiness.

Every single one of Lil Bill's issues can be traced back to him being born premature, at only 23 weeks and 1 day.  All of the 'unnatural' things that kept Lil Bill alive were initially determined a success through research.  The March of Dimes funds research to help maintain a full term pregnancy and helps babies get healthy.  We started participating in the March for Babies walk after we lost Aiden.  We walked in it the first year with Aiden in our hearts.  We walked in it the second year with Aiden still in our hearts and Lil Bill in our arms.  This year we plan to do the same.  Please help us and join us on our team to walk.  You can also donate to our team and all the money raised will go directly to the March of Dimes.