It seems that often times in life we are faced with trials that we just do not understand. The loss of Adam is right at the top of my list of hardest trials. I experienced a huge range of emotion with Anger rating highest on that list. While I had always known God had a plan, at that point in my life, I just could not see it. In my mind, I still believed it was true, but my heart was too broken to see reason!! After 8 months, I am started to accept that God's plan is perfect even though I am still in pain. I feel honored to have been chosed to be the Mom of a PERFECT ANGEL here on Earth, and guess what?!?! He is mine FOREVER. While I should have been thankful that Adam was not forced to endure more pain and misery in this life, I was so focused on Anger and Questioning.... WHY ME?!?!? If asked again this very minute to endure the pain of losing Adam again 1 million times just to have a few more moments of time with him, I would not hesitate. The joy he brought into this World was something so beautiful, I wish I could have shared him with EVERYONE!!! Do not get me wrong, I miss him something fierce, I cry often and still sometimes wonder why, but I also know that it is not mine to know at this time. I need to trust God's plan!
Wednesday, December 3, 2014
Matthas has been doing surprisingly well since they activated his cochlear implants.
He is currently on his 5th map (program). We will go in on Monday to add 2-3 more.
Here are some videos from when he heard the first time.
On the 2nd day, he was loving sounds. He was even looking for where it was coming from.
We are 1 weeks shy of one month hearing and he has already learned sooo much. He is making new sounds all the time.
Less than 24 hours activated he started to say the mmmm sound and make some other non distinct new noises.
Last night he was making 2 new sounds. The t sound (although he makes it by popping his toungue) and the sh sound. As you can imagine I was one very proud mama.....
Well, until he put the 2 sounds together. He would make the shhh sound then pop out a t sound. At first I did not think anything of it, but after about 10 minutes of this "pattern" it started to sound like a word.... Just think about it for a minute....
Yeah, I do not think I am putting that as his first word in his baby book LOL
We do not use that word, so I know it was just a fluke that he put the 2 together.... Wonder how the school will enjoy his new sounds :)
Sunday, October 26, 2014
Since Matthias' C.I. (Cochlear implant) surgery last week, I realized that many people actually have no idea what a cochlear implant does.
The first step in getting a cochlear implant is surgery.
Basically, during the surgery, a device is place under the skin (The white #3 in this pic). There is a string of electrodes that is connected to this device which is fed through the cochlea. The cochlea is blue in this picture. That white sting is what is inserted.
This might surprise you (it did me), but this surgery takes about 2 hours per ear. A lot of times, doctors only do one ear at a time. If they do not work, they want to preserve hearing in at least one ear. Once a cochlear implant is placed, you cannot go back to a hearing aid.
Matthias did not have any hearing to preserve, so we did both ears.
This is what the bandage looks like after surgery.
After 24 hours, you remove the bandages, and there are steri strips underneath.
A lot of people assume that at this point a person can hear.
That is not the case. At this point, you must allow the body to heal.
They used to wait 4-6 weeks, but now they only wait 2 weeks.
2 weeks after surgery, after the surgeon has agreed, you meet with you audiologist to get "activated".
These "processors" are actually what helps the person the hear.
The one on the left is worn behind the ear. The one on the right can be clipped on clothing, arm bands, head bands etc. The one on the right can also be made water proof.
This is a picture of a child wearing the water proof one.
This is a picture of a child wearing the behind the ear one.
Matthias will be getting both types for each ear. So, he can wear either kind.
Now how do these processors help a person with cochlear implants hear?
- A sound processor worn behind the ear or on the body, captures sound and turns it into digital code. The sound processor has a battery that powers the entire system.
- The sound processor transmits the digitally-coded sound through the coil on the outside of your head to the implant.
- The cochlear implant converts the digitally-coded sound into electrical impulses and sends them along the electrode array placed in the cochlea (the inner ear).
- The implant's electrodes stimulate the cochlea's hearing nerve, which then sends the impulses to the brain where they are interpreted as sound.
So, will Matthias hear instantly once they turn the processor on?
In theory, yes, he will, BUT there is a catch. The brain still has to interpret what is being heard. This means a path from the auditory nerve to the part of the brain that interprets sound must be formed. For a person who has already heard before, the path is mainly formed. They just need to build a small bridge from "normal hearing" to what is called "bionic hearing". For someone like Matthias, however, this process is much more challenging.
I like to use metaphors, so here it goes.....
Imagine you are standing in this field. Where you are standing is where the sound enters the brain. See that tree over there? Far in the distance. Imagine that is the part of the brain that interprets sound. You have to find a way to build a path to get from point a to point b.
Some people make this seem simple because they may have a piece of heavy equipment to clear the path.
With a machine like that, you could clear a path large enough for a semi truck in no time flat.
Other people may have something like a tiller to create their path.
With this machine, you could still build a decent path, and you could do it rather quickly, but there is no way a semi truck would fit through the first time you went through. Plus it would take a bit more effort to clear the path.
While other still have a small and simple weed eater to create their path with.
With this simple hand held tool, you can still clear the field, but it will not be an easy task. After a short time, you could walk through or maybe even ride a bike, but there would be no semi trucks riding through any time soon.
Why do I mention a semi truck?
Well, here is your answer. The more complex a sound, the larger path it needs to get through. A horn honking, something breaking, etc may be equivalent to a bike going through the field. Meanwhile, a more complex sound like a instrument or tune may be something like a car traveling through the field. Something super complex like language is equivalent to a semi truck driving though the field. Depending on the "tool" you are using (how quickly your brain adapts), and on how quickly your brain becomes exhausted will make a huge difference in determining how long it takes for a person to know what they are hearing. It can also make a huge difference in whether or not a person will understand speech and how long that will take.
Some people may never be able to make a complete path. There may be a river, road block or something in the way. They may be able to get by on foot (meaning they can hear simple non complex sounds), but their semi truck (language) may never make it through (they may never develop language).
The older a person is when they start communicating has a major effect on which tool they are using and their likeness of having a major road block.
Doctors on not optimistic that Matthias will ever speak and understand language.
He does not have any communication yet, and he is almost 8 years old.
In the case of cochlear implants and forming the path of communication, Matthias' delays in development could benefit him. Because he is still learning things that 1-2 year olds are learning, his brain may pick up and interpret sound easier than a "typical developing" child his age. There is only one way to find out..... Trial.
I will keep you all posted on Matthias' progress.
His activation date is November 10th
Friday, September 12, 2014
I pray that most of you reading this do not comprehend the pain of losing a child.
Whether you held that child for one day, one year, or even one decade, the pain is unimaginable.
None of us will truly understand the pain of another..... even if we have been through a similar situation.
I get asked a lot..... Are you ok? My answer is NO! I am not ok.....At least not yet. And I will never be OK like I was before my son died.
I must admit though, I thought the same thing when I lost a pregnancy in the 2nd trimester. I did learn to live again and handle the pain. Then when we lost of a commitment of a child we had planned to adopt because he was moved to an orphanage that did not do international adoption. The pain was even worse that time. After receiving new videos multiple times a week because we had a missionary friend there, it felt like he was already here in so many ways. Then when I lost Adam. After loving him, holding him, caring for him...... It was not like my other losses. This one cut much deeper. It was much harder.
The best comparison I can come up with is knee surgery.
Many of you probably do not know this, but I have had a couple knee surgeries.
When you first start experiencing the pain, and you are having trouble holding up your own weight, you know that this is going to be a long road. When the pain hits it's peak (the loss occurs... even though you knew it was coming), you feel like you will never walk again. You will never be the same again. Then after a while (for everyone is different), you take the doctor's (or God's in the case of a loss) advice. You try to walk again. You aren't good at it at first. People can still see your pain. They can see your limp. You have their sympathy, their help, their compassion. Then over time, without even realizing it, your limp fades, you start to run again, and sometimes you forget all about the pain that at one time felt like it was consuming you.
Then suddenly, you are walking down a path, doing what you think is right, minding your own business, when out of nowhere something knocks you down and you are instantly at the peak of your pain. No notice. No time to prepare. Emergency surgery is a must! You are instantly knocked down and you doubt you will ever walk again without pain. It may take longer this time, but , like before, you gradually decide to walk. To put some weight on your leg. Over time, your limp may fade, or it may stay. Either way, you are walking again. You being to walk faster and faster until you can keep up with the pace of life without many people noticing the "knee" that once held you back.
Well, this last one is the surgery of all surgeries.
Your legs were literally swept out from under you. You fell and you fell hard. No amount of preparation could have prepared you for the intensity of this pain. All the other pains seem tiny now. Your knee will never work the same again. Doctors go in and do a complete knee replacement. They do their best to put all the pieces back together and use artificial (new things) to fill in the gaps where the hole was left. With the help of others, you may take a couple steps. Those steps still hurt. Even with the help of others, with the therapy, and with the crutches they give you, you don't want to walk. Why bother? I will never be able to walk the same again. My life will never be the same again. What's the point? Your body (kids, family etc) needs you. It is not healthy to not keep on walking. Some people may even try to force you to walk before you are ready. Eventually you may take a few steps on your own. One of two thing will likely happen. 1) You will be proud of the steps you made, and want to take more. OR 2) You will fall and wonder why you even bothered trying, and you may have no desire to try again. Either way, at some point, whether by choice or out of necessity, you will start walking. The pain will still be there for a long time. Your limp will be worse and more noticeable than before. After all, part of you is missing. They may have tried their best to fill them in, but those parts will never work quite the same ever again. Eventually you will start walking better. Some days you may even forget about the pain that is always with you. Then something may happen. You trip. You stumble. You fall. Suddenly the pain is almost as real as the day it happened. You may not want to walk again. You may need more help. You may need your crutches again. You never know what days will be good and what days will be bad until you get up and take your first steps. At the end of the day though, you are thankful you are walking again. Even if the pain still consumes you.
I haven't gotten to this point yet, but I think that maybe, just maybe, I may forget for more than a few moments the pain the consumes me and be thankful for the time I had without pain. The joy I had running and laughing. Maybe one day, I will even run and laugh again. For right now, I will continue to limp through life just waiting for the day I can run for a while and not be consumed by pain. For today, I embrace the pain because before the pain, I had joy!
Saturday, August 30, 2014
I remember the last day I had with my son like it was yesterday even though it has been an agonizing 3 months. I started sleeping downstairs on the couch right next to him, or holding him..... However he was most comfortable, a couple weeks before. I had spoken to as many doctors as I could all with the same thing to say..... There is nothing more we can do. They never actually said he was gonna die. I guess it was too hard for them to admit, or they thought I would break down. I'm not sure why exactly. Finally, my primary care doctor, his primary care doctor, told me straight out that he did not have much time. He got him started with some pain meds to keep him comfortable, and I set up a meeting with our end of life care team to set up hospice. Just a couple days later, it was a Sunday, we had decided to move him, which we hadn't done in a while (more than around the house I mean). We went to Kevin's parents house. I figured his grandparents and cousins should see him one last time. It was that day that I knew it would be soon. My son was dying and there was nothing we could do for him. He was on several meds for pain..... 4 I believe. Nothing was helping. I called our specialized team of doctors to see who was on call around 7 pm. Adam was screaming. He could not eat anything at all without being sick. Should I rush him to the ER like I had so many times before? Call 911 like we had several times before? They told me last time I rushed him in that they could do nothing to help him. They were willing to admit him, but he would die in a hospital room instead of at home. Was that what I wanted for my precious child? No, he deserved to be surrounded by those who loved him. When the on-call doc called my back they added a few more meds. We basically sedated him, and they called a hospice team directly. Our appt was still a couple weeks out, and I felt certain that he did not have that long. We got set up on Tuesday with hospice. The doctors or nurses or therapists or or or... someone came every day. Sometimes multiple people sometimes multiple times per day. They brought more meds. At this point there was nothing more we could do other than keep him comfortable. We had an insane schedule of meds. I had them written down, and the longest interval was 2 hours. Not that I could sleep anyways. Always afraid he would take his last breath alone. Starting Wednesday night, I would only sleep if I was holding him. He could only be held for a short time before he had to be repositioned. Nights and Days were the same. Family and friends came in to see Adam and to help with the other kids.
Thursday night, things went from bad to worse. He was struggling for every single breath. Something no child, no person should every have to do. I called hospice. I asked them how long this would go on for. They said from 12 hours up to several days. At that point, I did something I never thought I would do, and something I wish nobody ever has to do. I prayed to God to take him as soon as he could. I could not watch my baby suffer any longer. My husband was working nights at the time, and as he quickly deteriorated throughout the night, I knew I had to call him and tell him to come home. I called immediate family and friends. This would be their last chance to say goodbye.
They wanted to hold him, but I could not make myself let him go. Finally, only because I literally had to get up and go to the bathroom, I let a couple of people hold him and say goodbye. I came right back and took my limp baby into my arms. He was still struggling, but he held on. I know he did it for me. He fought for me! I wasn't ready! You cannot prepare for something like this. Some people may say that I only had him for 9 months. I was with this sweet child of MINE for almost every minute of 9 months!!! We were rarely more than a room apart, and only a few times did I leave him with his loving Grandparents. Even then I would not go more than 5 miles away so I could be back to him quickly. He was delicate and fragile from the minute he came home. The damage they had done by not providing medical care for 6.5 years was irreversible.
Several times throughout the day on Friday, I thought about changing my mind. I could revoke hospice and rush him to the hospital. They have to make it so he can live a little longer. Maybe just maybe they will find a new cure. Maybe they will be able to fix the damage after all. Then my love for my son won out over my own selfish desire to keep him with me for longer. I could not let my child. My precious and tiny 7 year old son, suffer another minute.
I knew I had to let him go. I also knew it would be the hardest thing I could do.
Friday afternoon came around, we had passed the 12 hours, he was still suffering regardless of how many meds he was on. He was miserable. I prayed and prayed for God to let him be free. At 7 pm his heart began to slow. His breathes were getting further and further apart. I knew his time was near. I tried to be strong for him. I told him over and over how much I loved him. My sister, who had worked in a hospital, had seen people die. She knew the stages. She lovingly walked us through the process. My husband and I, our best friends, my sister and her oldest daughter, my parents..... we all sat waiting, watching and crying.
Then it happened. He stopped breathing. His pulse was weak and fading. We all gathered close and said our goodbyes. Then suddenly, as if he just couldn't bear to leave, he gasped. It startled me! Then slowly and steadily, he started breathing again. It was still very labored and agonizing, but he could not let go. We decided next time this happened we would all be quiet and still.
A couple hours later, sometime after 9pm, it started happening again. I held his hand while he was in my arms, and I softly whispered "It's ok. Go ahead and go."
His breathes grew further and further apart again. His pulse slowed. His breathing stopped, but I could visibly see his heart beating. It was slowing. Everything seemed to be in slow motion. At one point, my heart was beating so hard that it shook both of our bodies. My heart was seemingly beating hard enough for both of us. Then it happened. His heart stopped. My baby boy was gone.
Have you ever held a person, a child, as they died?
The strangest thing happened. The fluid/blood that was bulging visibly out of his head went away.
The pain was gone out of his face.
He was finally free from pain. Possibly for the first time in his entire life.
He was an angel here on Earth lent to us for a short time.
He changed the lives of all who knew him.
He couldn't walk, crawl, talk, or hardly move, but he had an impact on the World.
He definitely changed my family..... He blessed us far more than you can imagine.
I miss you little man!!
Saturday, August 2, 2014
I haven't been able to bring myself to blog since Adam passed. It just hasn't seemed important.
Today we have something worth sharing.
My sweet Brittany was baptized.
A very dear friend of ours, Ryan, was also baptized.
Ryan's baptism was first :)
Our 2 eight year olds. They were so cute together!
This is what Matthias did during the baptism..... yeah he is reverent like that :)
My little Kebby. I just adore him
Matt grabbed onto Adam and made him lead the way :)
Two of my newest friends and amazing people!! I just love them.
I am pretty sure Kait is trying to figure out what is wrong with these 2.
On a side note both Adam and Kevin are wearing their "Adam" ties that they wore to Adam's funeral and the last time I was in this room was for the luncheon following the funeral :(
Matthias kept climbing under the table to play..... He just loves being on the ground
He is a sandwich model. ;)
Silly Grandma made Brittany's dress and Crazy grandma made her an awesome CTR necklace :)
Brittany and her great grandpa
Kaitlyn is so tall for 9..... She is almost as tall as grandpa GG
My 2 oldest in the dresses grandma made for them
Matthias loving getting tickled by Sondra
Later in the day, it was Brittany's turn to be baptized.
We had a few photo bombers....
I love this picture..... Thanks Grandma for the bunny ears that Britt found very amusing.
We had a great turn out and Matthias got a chance to hang out with lots of family.
Ryan was so cute with his new scriptures
After the baptism, we had everyone back to our house. There were people everywhere.
Brittany and her Great Grandma