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.

Yanno...no 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 all..to 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

We..are...finally...here....

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.

CLICK HERE TO CHECK OUT OUR TEAM PAGE TO SIGN UP TO WALK WITH US OR DONATE TO OUR TEAM!

Tuesday, March 4, 2014

he is not broken...

Well there is lots and lots going on in our world this month.

We are kicking off the month with a G.I. appointment this Thursday, followed by an appointment with a cochlear implant surgeon on Friday.  Why are we meeting with a cochlear implant surgeon you ask?  Good question, I will get to that later in the post.

The following week we have an IFSP plan meeting with several different parties to revise Lil Bill's treatment and goals plan.  We are also going to be seeing the eye doctor that week as well.  (Keep your fingers crossed for no glasses! We already have a hell of a time trying to keep hearing aids and braces on our boy!)

The following week Lil Bill will go under general anesthesia for an MRI, a cat scan, a bronchoscope, and to repair his frenulum.  The MRI and cat scan are screening for the cochlear implant candidacy.  Since he was going under general anesthesia his ENT doctor wanted to ad a bronchoscope to check on his airway diseases and to see if his left vocal cord is still paralyzed.  He also wanted to fix his frenulum.  The frenulum is a little piece of tissue maybe??  Basically its the thing that connects your tongue to the bottom of your mouth.  Lil Bill was tongue tied and actually broke that piece on his tooth, tried to fix it himself ha! But it is a little messy so they are going to fix it up too. 

We will be adding a pre op appointment before all the tests at some point, just do not know when.

We are going to end the month with Lil Bill's primary care doctor whom we really like!  This is a very busy month for us.  I do not think we have had so much going on in a month since Lil Bill came home from the NICU.  We will get through it.  Hopefully Lil Bill will not get sick this month, which would many appointments on to our schedule! 

He has not been sick in three weeks (knock on wood!)  This season (since Octoberish) has not been so kind to my little man.  He has been sick more than he hasn't.  When he gets sick he coughs so hard and so frequently he throws up so much.  Because of this he has not gained weight at all.  He gets weighed at daycare frequently and we have noticed a slight rise in his weight.  I was so happy! I hope it stays that way.  I am interested to see how much he ways at his G.I. appointment later this week.

SOOO we are meeting with the cochlear implant surgeon, and doing a bunch of tests for it?? For my readers to who do not catch on quickly, or rather because I never formally wrote this, we have decided to get the implants!  After much research, talking with professionals, and other families who have gotten their child the implants we choose to do so.  It is what we think would benefit Lil Bill the most.  Due to his hearing loss, and his auditory neuropathy, we do not know exactly how much or what he hears. 

It was best explained to me like this.  You know when a radio station goes staticy and you can only hear bits and pieces of the song?  Or when its just straight static and you can't hear any of the song?? Well that's exactly what auditory neuropathy is.  We do not know how severe Lil Bill's is.  We know that sometimes we could scream his name from a room over and he will hear it.  We know that sometimes we can scream his name from behind him and he won't even notice.  He has what we like to call hearing moments.

Here is a link.  The links under number 1 are what the cochlear implants will sound like.  The links under number two are similar to what he currently hears.

http://www.healthaffairs.uci.edu/hesp/simulations/simulationsmain.htm

I will never forget the first time we just knew he heard.  We were at his mom mom's house and the fire alarm went off when someone was cooking.  Lil Bill jumped and looked around and actually seemed to find the sound amusing.  Prob the only person on the planet to find that sound amusing huh?  So we were so excited and went and stood right next to the fire alarm with him.  Let's make one thing clear, there was no fire!  But we were so happy for him and he seemed so happy to hear something. 

Since then, it is very apparent that he does hear some times.  There is no denying that.  However with his booth tests, with his hearing aids on the highest settings, there is still not response until 70-75 decibels.  He displays patterns of babies and toddlers who can't hear.  One being, his vocalizations.  He used to babble, he used to vocalize so much.  He still will occasionally, but compared to how he used it, he does it so so much less.  This is because he can not hear himself and he is not getting reinforcement from his audio sense that he is actually making sounds.  He mimics us occasionally.  Simple sounds like AH and OH.  While he has say hi, yea, no, and mum (yes mum, he picked up a British accent somewhere), he does not say any on the regular.  He does try to communicate though.  He eye gazes and he grabs at things when he has the physical ability to do so.

Due to his physical limitations, we believe that signing would be difficult for him.  Billy and I have thought long and hard about this and had several discussions and we believe it is what is best for our son.  Based on his hearing loss, abrs, booth tests, and lack of progress with speech, he is a candidate for the implants.  However several other tests need to be done, such as the MRI and cat scan mentioned above and we have to get genetic tests done.  If all these tests come back ok then at some point in the near future Lil Bill will receive the cochlear implants.

I am so excited yet so anxious and scared.  To give my son the gift of being able to hear which technology has made possible is amazing.  Though I feel self doubt in wondering if we made the right choice for him.  We have made so many medical and developmental decisions for him and I always think about them after hoping we did the right thing.  But to implant him with something that will take away all of the natural hearing he has in order for him to hear everything more effectively, wow its a big decision.  My biggest fear is that years down the road he will think we were trying to fix him by doing this.  I do not want to fix him, he is not broken, I just want to offer him any opportunity I can.  He has had it so hard and has overcome such much, and continues to, so gracefully.  I admire him for his strength.  I just want to make his life easier and this seems like the option to do that.

More to come!

Monday, February 17, 2014

an update!

Well been a long time since I wrote on here.  Life has been chaotic, between work and school for both me and Billy and taking care of Lil Bill we do not have much time to ourselves these days.  And when we do, we do laundry or dishes, ha the joys of parenthood!

It has been a very tough couple months for Lil Bill.  He has been sick with respiratory illnesses more than he has been well.  For the past couple months he spends about two weeks sick at a time, then a couple days feeling well, then sick again.  However he has only had to be hospitalized once and only required a little bit of oxygen.  So for someone with chronic lung diseases and multiple airway diseases that is pretty good!  Because of his airway diseases, he will go from not coughing at all to coughing uncontrollably and wheezy within hours.  We have several breathing treatments to use with him for when this happens.  We have found, that those breathing treatments do not have anything on a steamy room.  The steam really clears up that mucus!

That one hospitalization did end with us getting all of our old medical equipment back at home with us.  We now have the oxygen concentrater again, a bunch of oxygen tanks, the pulse ox monitor, and a suction machine.  I do have to give it up for the suction machine.  It works so well and Lil Bill feels so much better after.  I have concluded that every baby should be born with a suction machine.  Those little suction bulbs just are not that great.

They sent us home with all the equipment so if Lil Bill gets sick enough again and just needs a little bit of extra support, then we can do it here rather than have him hospitalized.  We have not needed it yet, so I hope just having it here wards off bad spirits!  I just cannot wait for this flu season to be over.  When Lil Bill came home from the NICU last year it was January, and we did not leave the house until April for anything other than doctor appointments.  And it worked, he never even caught one cold.  But we couldn't keep him in a bubble anymore.  I think him being in the medical day care he is in, being around so many other kids does not help in that aspect.  Home care nursing was mentioned to us as an alternative to the daycare.  I could never take him out of there.  Nothing comes close to warming my heart as much as walking in and seeing him playing with other kids his age, actually laughing and engaging with them, with a huge big smile on his face.  Unlike his momma, Lil Bill is a social butterfly, he loves interacting with kids his age.  I couldn't take him away from that.

Today, Lil Bill was fitted for different adaptable equipment.  He was fitted for a stander, a feeding and activity chair, a bathing chair, and a wheelchair stroller.  I could not help but to feel a little sad about it.  All this equipment to help him be able to do things that most of us do without even thinking about.  I am trying to be excited about it, I know it will only help all of our lives be easier.  I just have to come to acceptance about it.  Our life is not typical, but it is ours.  Lil Bill handles everything so gracefully and doesn't seem bothered by all of the hurdles he goes through everyday, so why should I?

So, on the topic of hurdles, we also met with a speech therapist at the hospital today who is part of the cochlear implant team.  She gave us an idea of what the therapy will be if we do go through with the cochlear implants.  See, the cochlear implants are not just a quick fix.  It is not like turning on a light switch and having it go from dark to light and everything is all good.  The cochlear implants are only successful when followed by intense therapy.  She said the first year is critical, and we will  be going there for therapy at least twice a week.  She said she recommends Billy and I alternate who takes him.  So that way we are both learning about the therapy and will know how to practice it at home.  The therapy will have to become just a part of our lives at home.  It has to be consistent and the whole process is a big commitment.  The therapy is audio visual therapy.  Since Lil Bill has hearing loss and a hearing disorder, he relies very much on his visual sense.  This therapy helps him rely on his hearing, helps him realize he does hear, helps him process it, and embrace it.  An example of how this is done is covering your mouth when you are talking to him and trying to get him to make the same sounds or words are you make.  The therapist used this analogy: When someone breaks their arm and the arm is in a cast for months, they then go to therapy to strengthen the arm that was in the cast, not the arm that has been free.  This is basically what the therapy does.  Think of the hearing as the arm in the cast and the vision as the arm that has been free.

We have decided we are going to go with the implants, if appropriate.  It is recommended by the professionals that he gets them, but he has to go through a series of MRIs and other tests to make sure everything is ok physically to get them.  For example, if his auditory nerve is too close to his facial nerve it will not be recommended he get them.  Our ultimate goal is for Lil Bill to communicate verbally.  We are well aware that he has other issues that may get in the way of that such as left vocal cord paralysis and CP.  With his type of CP he is super tight everywhere except along the neck muscles.  If Lil Bill cannot talk verbally, at least he will be able to hear more than he is hearing now.  The speech therapist told us about a girl who has several cognitive and physical limitations.  She said she got the implants and laughs at the sounds and noises she hears.  She gets excitement from them, even if she doesn't understand them.  So even if all this procedure does is enhance Lil Bill's life with excitement, then that is still better than not doing it.

On a lighter note, Lil Bill has been ranging from 18-19 pounds 15 ounces since September.  Since he has been so sick for so long, and he always coughs so hard he throws up when he gets sick, weight gain has become an issue.  Well today he was weighed at daycare and I am happy to report Lil Bill is over 20 pounds finally!! 20.004 pounds.  He was recently put on a diet to gain weight and has not been sick in a little over a week, besides a 24 hour stomach bug this weekend, so hopefully he will start growing again! Back in September they wanted his weight gain to slow down, it slowed down too much, now they want it to speed back up.  Lil Bill's body is trying to keep up with the different things the doctors want it to do.