Thursday, November 17, 2016

Our Prematurity Awareness Story......

I have not written on here in well, years it appears.  Life has been hectic, life has been busy, life has been one thing after the other.  For those who know me (which is prob. most of you since I am not that popular lol) know how crazy things can get.  But I have been feeling a little emotional lately and felt the need to write this.  It is way longer than I anticipated - but I hope it is worth the read!

Today, Nov. 17th is World Prematurity Awareness Day.  What is prematurity awareness day anyway?  A day that we want everyone to think of premature babies being born, the risks involved.  A day we want to celebrate our rockstar premiees are (which they are!) or say cute sayings like ‘strongest in the weight class’ (which is another true thing).   But aside from that, for my family,   prematurity awareness is so much more.  Prematurity has changed our lives, forever.

I want to stress that not every baby who  is born premature – even as early as Billy, ends up where he  ends up.  I also want to stress that not every child that ends up where he is had the same beginning as him.  But I felt it was important to tell some of our story because I get asked so often, 'What diagnosis does Lil Bill have?'  'Why does he have it?' Things like that.  Even from people who know how early he was born.  For us, absolutely everything goes back to prematurity.
  • What does prematurity mean to us?  Well for starters, it means loss.
It means the loss of our first baby boy, Aiden.  He was born at 20 weeks.  He was less than one pound.  When he was born, he had a heartbeat, he was moving.  By the time we held our baby boy, he was gone.  We were bombarded with pastoral care, people coming in to talk about funeral arrangements, wanting to know his name.  We hadn’t even 100% decided on a name.  There was a photographer that came and took professional pictures that we hold close to our heart.  The hospital gave us a memory box, we keep it on a shelf in our bedroom with his picture.  We have a white knitted blanket that stays on our bed.  It was his. I cried my eyes out as I was rolled out of the hospital, clinging the memory box, like it was all I had left.  Billy was walking with me, trying to be strong for me.

We wrote him letters that were buried in his casket with him.  We painted a heart with his name, Aiden Matthew Succarotte on it.  It was a wall decal.  Originally, when we bought it, we thought we were going to paint it and put it above his crib.  We also put it in his casket.  His funeral was one of the saddest experiences I ever had.  I can still picture it, like I am there, staring at a tiny casket.
It is hard to process, that something like that could happen to you.  It is one of those things that you hear about happening to someone that you ‘kind of’ know.  Prematurity means grief, due to loss.
The doctors told me I had an incompetent cervix.  They had a plan in place – they told me it wouldn’t happen again.
  • Prematurity means courage to try again.
Soon after, we got pregnant again.  We were nervous, but excited.  We were trying to trust in the doctors.  But nothing was going right during the pregnancy.
  • Prematurity means bed rest.
I was on bed rest from basically the end of my first trimester until we had our son, at 23 weeks.  In and out of the hospital.  I tried to learn how to knit – I didn’t even have the patience for it when I was on bed rest hehe.  I fell in love with Netflix. 
  • Prematurity means hard boundaries.
When I was 22 weeks and 6 days pregnant – I was in labor.  We all thought I was going to deliver.  A doctor was in the room with us and she said that they couldn’t’ do anything to stop the labor or try to save our baby.  She said that if it was 16 hours later they could do both of those options if we wanted her to.  But they will not intervene before 23 weeks.  16 hours.  Let that sink in.  The line has to be drawn somewhere – I get that.  But 16 hours.
  • Prematurity means hope.
The next day I was still pregnant.  We spoke with a NICU doctor who told us that if we had our baby this week he would have a very high chance of a disability – and that the survival rate for babies born at 23 weeks is about 1 in 4 – so 25%.  He said if we wanted to try to save him, they would do it.  Or we could let him go peacefully.  We had hope.  If there was a 1 in 4 chance he would survive – and he came out trying – how could we not?

We had ‘Lil Bill’ 2 days later at 23 weeks and 1 day.  1 and a half pounds, literally the size of a beanie baby, or a container of salt!

He was born breech in his water sack.  I didn’t have any drugs (not by choice may I ad).  He was only 1 pound and 7 ounces and I did NOT forget the pain.  For those that push out 7-8-9 pound babies – RESPECT! 
When Bill was 4 days old, we got his brain scan results.  He had a grade 4 brain bleed in one side of his brain (that is the biggest bleed).  I remember the neonatologist telling us that he was doing ok on the ventilator so that was a good sign.  But she also told us to bring in our belongings, take pictures, get involved in his care, and make it feel like home – because this might be the only time we have with him.
We still had hope.
  • Prematurity means feeling hopeless somedays.
The NICU we were in had a ‘Wall of Hope.’ In front of it.  It showed premature babies, as babies, and then as older kids, it had their birth weights, etc.  One day we were walking behind parents who were looking at the kids on the wall.  We heard them say ‘Oh look – they were smaller than her and they made it.’  They had hope.
Days later, we watched them say goodbye to their daughter.  Maybe hope is not enough.
  • Prematurity means never knowing what to expect.

We never knew what we were walking into.  When Lil Bill was 2 weeks old, he was very sick.  It was still in touch and go.  He needed heart surgery to close a ductus in his heart.  We found out about the surgery the morning they were doing it.  We signed papers giving them permission, and noted all the risks – one being death.  When they finished prepping him for surgery and it was time to let them do their thing – they asked if we wanted to kiss him goodbye.  That was the first time we ever kissed him.
  • Prematurity means praying for the perfect amount of pee.
After that, he got worse.  He was not urinating, for days.  We thought we were going to lose him.  I remember praying for pee.  I prayed so hard.  All I could do was cry when I looked at him.  He looked so bad. 

Finally, he started peeing.  We were so happy! We were then told – he was peeing too much – which was a problem.  We needed the perfect amount of pee. 
  • Prematurity means patience
Bill was in the NICU for almost 150 days.  We couldn’t hold him until he was at least over one month old.  The first time Billy held him – Lil Bill stopped breathing.  Our area swarmed with nurses.  Talk about traumatic! The next attempt - it– took 5 nurses to make it happen. 

  • Prematurity means chronic lung disease.
Bill was on the ventilator for 12 weeks.  He was on several different kinds of vents.  One pumped about 400 shallow breaths into him in one minute to minimize lung damage.  Can you imagine?  

Billy also had a big bleb in his lung, which basically is a big pocket of air.  It collapsed his lung and put pressure on his heart.  Two of the doctors stuck a chest tube in to drain it.  It worked!  Before they did it, I don’t think I fully understood how rare it is that this procedure works.  A nurse talked with me more about it right after.  
The damage was already done.  Billy still his chronic lung disease.  Which means frequent pneumonias, which means any cold can turn into something serious quick, Which is why I don’t play around in the winter months.
In the NICU as we were getting discharged (it was the end of January which is the worst time of the year for us – flu season!) they told me to not take him out until the end of flu/rsv season because one bad cold could have him back on a ventilator in the hospital.  I kept him home all winter – with the exception of doctor appointments.  If you came into our house – you were sanitizing and washing your hands before coming close to us.
The first time Billy got seriously sick with pneumonia was that June.  Way out of flu season.  I felt like it happened just as I let my guard down.  His pulmonogloist re assured me I couldn’t keep him in a bubble.
Since then, I lost count of the number of times Billy has had pneumonia. 
  • Prematurity means brain damage. 
As I mentioned, Billy had a grade 4 brain bleed when he was born.  Brain bleeds are common with premature babies – their brains cannot handle being born so early.  That – with the frequent desaturations with his oxygen (there was a time Billy’s number oxygen stats were at a steady 70 – for weeks – they changed his alarm settings because of it. Your oxygen stats are supposed to be 100).  The lack of oxygen going to his brain caused brain damage as well.

For us, brain damage means spastic quadriplegic cerebral palsy.  This means that all 4 limbs are affected.  Billy’s tones fluctuates – but for the most part his arms and legs are very spastic, tight, and his trunk is very floppy.  His tone causes Billy discomfort – and pain, and muscle spasms sometimes.    Billy is 4 and still working hard to build trunk strength to hold his head and neck up.
  • Prematurity means tracheamalcia.
This is basically a floppy airway.  This is another reason why when Billy gets a cold – he gets really sick.  This also causes him to have sleep apnea – requiring him to wear a cpap every night to sleep. 
When his tracheamalcia is acting up – we have seen him start nonstop coughing fits.  Literally – non stop.  The only thing that can possibly help at those times is his c-pap and oral steroids. 
This is related to muscle tone.  We were told if Billy’s trunk control gets better, this should get better.  We are working towards that.
  • Prematurity means GI issues and feeding difficulties.
Billy has severe reflux.  He had to get a nissen surgery (when they tie some of your stomach around your esophagus) to prevent re flux from coming up. 
Billy also struggles with regular constipation.  He has prescriptions medicine to help with this.
Billy also aspirates on liquids.  He eats only a pureed diet.  He does not always eat enough to get what he needs to continue to grow.  Due to both of those reasons, he has a gubte (feeding tube placed through stomach).

Again, this is mostly related to muscle tone.
  • Prematurity means auditory neuropathy and hearing loss.
Billy has auditory neuropathy, which is basically like a staticky raido. You can hear some of what is coming through – but not everything.  He also has severe hearing loss.  Billy has cochlear implants – he loves wearing them! They have changed his life. 

  • Prematurity means cortical vision impairment and vision loss.
Billy has cortical vision impairment (CVI) which is an issue with processing – what his eyes send to his brain.  He also is nearsighted and has vision field loss (he can’t see downward).
  • Prematurity means seizure activity.
While we don’t have an official seizure diagnosis – that isn’t for a lack for trying to get one.  The first time Billy had a seizure, he was 2 years old and we found him in his bed seizing.  He was twitching and completely unresponsive. 
Since then we have had concerns over certain episodes of him being unresponsive or his body tightening up.  On one occasion his medical day program had to call an ambulance because they thought he was going in and out of seizures for 45 minutes. 
We have had multiple EEGS, in the hospital and at home ones, video EEGS, and regular EEGS.  Billy did not have any seizures during any of the studies.  This does not mean he is not having them. 
  • Prematurity means medical equipment.
When Billy was first born, so early – the statistics for a disability are extremely high.  And then when his brain bleed was confirmed it brought much more  uncertainty about Billy’s future.  When Billy was still brand new (prob still under one month), one of the doctors told us some kids with Billy’s beginning who do live, don’t ever come home – they end up in institutions. 
We live in a world where that doesn’t have to happen.  Thank GOD! We have so much medical equipment at home.  My husband and I often joke that we run a mini hospital at home.  We have an oxygen concentrator, a c-pap machine, a cough assist machine, a suction machine, a chest vest treatment machine, a nebulizer, a ‘bag’ (what they use in the hospital to get you to breathe again), a feeding tube pump, and a pulse ox machine.  We also have a stander, 2 gait trainers, 2 adapted chairs that support Billy enough.  This equipment is always at our house, or our car, or where ever we go....

Once a month we get deliveries of feeding bags, gtube extensions, syringes of all sizes (60 mls, 30 mls, 15 mls), gauze, farrel bags, suction supplies (canisters, tubing, nasal aspirators, etc.), pulse ox probes, nasal cannulas, so much tubing – tubing for the oxygen concentrator, tubing for the c pap, tubing for the nebulizers, masks – for the c pap and nebulizer,
We even have a home health nurse every night.
And I hear pulse ox alarms, all the time, in the shower, in my sleep, in my car, when I am not around Billy.  It is like that annoying beep is stuck in my brain. 
Yes, I know, not quite a mini hospital – but close!
  • Prematurity means therapies.
Billy has been in therapy since before he left the NICU.  He had already started PT and OT in there.
Delaware has a program call ‘Early Intervention-Child Watch’ and they ensure you get in all of the appropriate therapies.  When I stayed home with Billy – we had therapists come to our house for Billy’s therapies – physical therapy, occupational therapy and speech therapy. 
When Billy started at Nurses n Kids, his medical day program – his therapies started there.  He had all of the same therapies – plus feeding therapy.
When Billy was 2 years old he got the cochlear implants.  When he got them, we committed to taking him to the hospital twice a week for therapy with a speech therapist to help him learn to listen.  We were told it would be twice a week for one year. 
He is four – and we still go to the hospital at least once a week – sometimes twice a week for therapies.  We did transition from to physical therapy there last year. 
We thought the extra PT would help build trunk control or Billy.
Billy also gets PT, OT, and speech at school several times a week.

A teacher from the deaf/bling program comes out to see him at school once a week.

He also does hippo therapy with an OT.  Hippotherapy involves Billy riding a pony.
While any of Billy’s therapists can tell you he tries so hard in therapy and usually happily, we really do love the hippotherapy.  While it is therapy,  I think he sees it as more of a fun activity.
  • Prematurity means meeting amazing people, you never thought you would know.
We have met so many amazing people since our journey with Billy started.  It started in the NICU with the nurses and doctors, some of them have hearts of gold. We couldn’t have been in a better NICU, some of them there held our hands the entire time.  Laughed and cried with us, and went above and beyond with Billy's care.  The March of Dimes had a great presence in our NICU and them and the people that they brought in were wonderful.

And Billy’s therapists, it is funny, some of them start feeling like family after a while.  They have truly touched our hearts, whether it was working with Billy for hours upon hours to help him ‘walk’ so we could surprise his dad at our Wedding, or visiting Billy in the hospital after surgery and cradling him to comfort him, advocating for him, learning new things for him, going out of their way for him.  They push him, challenge him, and celebrate with him.
Nurses, from the NICU, from our children’s hospital, from Billy’s medical day program, from our home health agency.  We have been blessed to have several amazing nurses in our life who love Billy and go out of their way to make him happy, who fight for him.  Just ask us about Billy’s girlfriend!
Doctors – I have had many phone calls from Billy’s doctors late at night.  We hate being the ones that they think about after hours, but so grateful for the care they put into Billy’s health.  I have had doctors offer me tissues and comfort in appointments, who have had hard conversations with us, that were needed.  One doctor called me back when he was on a family vacation.  One doctor and I almost cried together when we looked back on Billy’s progress. 
Billy’s teachers are some of the kindest people I know.  His school teachers and his teacher from the Deaf/Blind program.  We are so blessed with so many people who put time, effort, and thought into helping Billy achieve all he wants outa life!
The most amazing, some of the families we have met on our journey.  Whether it was through being at the NICU, the hospital, the deaf/blind program functions we go to , school, or Billy’s medical day program, we have learned about so many different diagnosis’, so many different ideas, so many different outcomes.  We have been so inspired by other families, to not only continue giving every day our best – but to continue living life in every aspect that we can, and to still smile and laugh at our lives!  We learn so much from others, get so much support from other.  We have so many pieces of hand me down equipment that other children we know have grown out of, adapted bikes, chairs, etc.  I look forward to passing everything along to families of other children who need them like we needed them.  We all need each other, and without that support and understanding, I don't know what I would do.
  • Prematurity means never taking life for granted.
Billy has taught me so much about life, he loves life, so much.  There is so much he cannot do.   But he has truly made me redefine my definition of qualify of life. I was always so nervous about his quality of life.  I remember fighting to keep allowing him to eat by mouth or drink liquids by mouth – for qualify of life.  Billy loves eating – but taking away liquids has not changed his qualify of life at all.  
He tries so hard – for everything he does.  If he can’t do something, which is often, he does get upset.  But briefly.  He gives himself a minute and then tries again.  He wants to do what others do – he wants to try to get there.

He embraces every emotion.  If you have seen Billy’s ‘sad lip’ you know what I mean.  And his smile, he smiles with his entire body!! And if you have seen a big smile from Billy, you know what I mean. 
And when he laughs, he laughs so hard – he stops breathing sometimes.  When I walk through the door at night, he laughs, so hard, and twists and turns back and forth and his face turns different colors.  No one has ever been that happy to see me.  I literally take his breathe away.
We never know what will happen tomorrow.  Life is like always waiting for the other shoe to drop.  So we do what we can, every day, and try new experiences, every chance we can.
  • Prematurity means miracles.
We know how truly blessed we are.  After losing Aiden and after being so close to losing Bill, we know we were blessed with a miracle.  Some days are hard, and I do feel what I would call grief.  Grief of the life I thought we would have.  Grief for Billy, grief for me.  But we move forward from it. 
Lil Bill is one of the happiest people I know.  He is the bravest, strongest, most courageous person I know.  He is full of wonder and loves his friends! I have seen him smile through pneumonia illnesses.  Even last night, he was retching and choking for 5-10 minutes.  When he was done and cleared his throat, then looked at us and smiled.  Like ‘what’s next, let’s do something fun!’
 After all he has been through, all that he continues to still go through – he wakes up every day with a smile, gets ‘ants and his pants’ when he sees the school bus, frowns when he leaves his friends at school.  As long as he wants to, we will find a way for him to do anything he wants.

And we celebrate everything.  Small things, big things, everything.  I was really emotional last school year at the end of the year, he got multiple awards.  I cried when I left the ceremony.  It felt like such a huge deal.  Moments come so often like that.  They feel like such a big deal because I truly know how close we were to not having them at all, everything is a miracle. 
  • Prematurity means a new perspective.
When Billy was in the NICU, I want to a therapist there a couple times.  We were talking about raising a child with special needs and she told me that I wouldn’t miss out on anything.  She said the same feeling that a parent gets when their child scores a goal in a soccer game, is the same feeling that I will get when Billy learns to feed himself.  I do believe that to be 100% true.  I could not be more proud of anything Billy accomplishes. 
Our story is still unfolding.  For the first time since Billy was born, I feel as though things are stabling out for him.  His ‘baseline’ is still not like yours or mine would be, and I don’t think it will ever be, but he is significantly better than even last year.  We don’t know what happen with some of his chronic conditions, our biggest worries right now are his lung/airway diseases and his tone and muscle spasms. 

I do wish I would have known then what I knew now.  I remember just wanting Billy to live so bad, disabled or not, medical issues or not, I just wanted him to live.  Although, being perfectly honest, I think 4 years ago when Billy was in the NICU, if I knew what our life would look like now – it probably would have scared the shit out of me.  But deep down, I believe I would have felt relieved.  But I couldn’t’ possibly have known how blessed I would feel.
Before prematurity, would I have lived a life of celebrating everything my child does? Believing everything is a miracle?  Would I feel like I do now about Bill and about life?  I don’t know.  I really don’t.  Experiences transform us as people, all of you, no matter what the experience is.
If I hadn’t prepared myself multiple times to say goodbye to Bill, if I hadn’t heard doctors tell me they didn’t think he was going to make it, if I didn’t watch him fight for his life, so beautifully for several months, if I didn’t watch my husband perform CPR on him in our home, and if I still didn’t spend time doing his medical care, our watch him countless hours in therapy – would I feel the way I do? Would I believe everything I see his a miracle unfolding?  Would I get a frantic phone call from my husband so excited because Billy bared weight on his legs? Would my husband and I laugh and tell Bill ‘great job for using your arms’ when he knocks over a salt shaker at a restaurant?  Would I be estastic when Billy said ‘you hurt me’ to me, because of him actually speaking! Would I feel blessed for every minute my child is hear with us?  Would my husband and I make such an amazing team in life? Would we be able to joke around in the midst of the medical crisis?  Last night, after Billy was done choking, all 3 of us just laughed together and made funny noises and made jokes about Billy's suctioner and farrell bags.

Prematurity has blessed us.  With the perception of having a glass half full – all the time. 

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!