Tiny, but Mighty.

“God made me so that you can see small things are strong too” 

The most difficult, and frustrating, part of raising a child like Carson is the uncertainty of it all. We never know what each new day will bring. I always joke that Carson likes to play tricks, but it’s true. We feel like we maybe get a handle on one problem, and he throws another one at us. Carson spent most of 2016 working harder than anyone should to breathe. In November he had surgery on his airway to help him breathe more comfortably. We felt like we had finally made progress. One step forward. Before the month was over he had an 18 minute seizure, and of course neurology had no idea why. Two steps backwards. Thankfully, with seizure medication he has been seizure free since. One step forward again. Fast forward to today..

Carson has struggled to gain weight his entire life. We had the fun summer of putting NG tubes down constantly, we got his g tube, we have tried numerous formulas and ways to increase his calories, and he has had surgery to “keep him from throwing up” (*insert sarcastic giggle here).  I have changed his feeding regimen more times than I can remember in hopes of finding something that worked. It takes close to half an hour every morning just to mix and set up his feed after I add vitamins, salt, and calorie boosters that are all calculated down to the milliliter.

In January Carson stopped tolerating any bolus feeds. Instead of feeding him several times a day, he now eats at a slower rate 24/7.  Since we stopped bolus feeds he has only thrown up a handful of times. However, he has lost three pounds in the last month. In February Carson weighed over 25 pounds (the most he has ever weighed is 26 pounds). Today he weighs 22.4 pounds. In true Carson fashion, nobody understands why he is losing weight so quickly.

We are fortunate enough to live in a country where we have access to plenty of specialists and more than enough food to sustain Carson. The childhood obesity rate is skyrocketing, but Carson has bruises on his spine from supporting his own weight without the cushion of fat and muscle. We have someone who makes a living off of calculating and writing diet plans for kids like Carson, yet here we are. This is the frustration. Although it seems like we have everything we need, we are still missing a piece of the puzzle. And no one seems to be able to find it.

 

 

 

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It’s been nearly two years since my first post, and not much has changed. This blog was originally created as a way for me to allow others to better understand our journey of raising a child like Carson. It has also become a way for me to decompress and not become completely swallowed up by the emotions that raising a special needs child brings. To do that I have to share it all. The good, the bad, and the ugly. Special needs parenting is that and so much more. It is a constant fight. It is messy and complicated. It is rewarding, humbling, infuriating, nauseating, terrifying, amazing, life changing, and never ending. It will sweep you off your feet and then knock you on your butt. It shows no mercy, so you show no mercy right back. It changes everything: your personality, your interests, your entire outlook on life.

I spent the morning reading all of my previous posts, and I couldn’t help but laugh at myself. It’s funny how much your perspective can change over time. I went back to when we found out Carson was deaf. At the time that seemed like the hardest thing to accept. I couldn’t imagine raising a deaf child. It broke my heart. Now all I can do is laugh about how naive I was about how hard this journey was going to get. I have gone from being heartbroken that my child was deaf, to resentful that he is, and will probably always be, in a wheelchair, and finally to thankful that he woke up this morning to live another day. Special needs parenting is an emotional roller coaster that leaves you desperately trying to find something to cling onto. All you want to do is find something to steady yourself with.

A day will come when you realize that there is nothing that will steady you. Everyday will always be an emotional roller coaster. That’s just the reality of special needs parenting. On that day you will realize that the only thing you can cling to is faith. That is also the day you will realize that faith is much more complicated than you ever thought it was. You want to have faith that God will miraculously heal your child one day. Everyone around you will too. It’s okay to feel that way, but at some point your faith has to evolve with your child’s needs. I have learned that if my faith doesn’t evolve and I continue to “have faith” that God will heal Carson and make him “normal” (whatever that means) then I will end up resentful and bitter. God never promised us that he would fix our problems. He promised us that he would never leave nor forsake us.

Having faith doesn’t mean that you won’t have struggles. I struggle everyday. Special needs parenting is the biggest blessing and the heaviest burden. It causes you to have emotions and thoughts that no one else around you completely understands. My hope for this blog is not to burden anyone but to somehow provide encouragement to others who are struggling. In order to do that it is only fair to share my own struggles. My goal is not to make anyone feel sorry for me. Please don’t. When other people feel sorry for me it makes me want to feel sorry for myself. As a special needs parent I just don’t have the time or energy for that, and it’s not fair to Carson for me to throw a pity party for myself. If at any point this post becomes burdensome please stop reading. Like I said earlier in this post this blog is a way for me to allow people to experience this journey with us and as a way for me to decompress and spare my sanity instead of keeping it all bottled up. If at any point you want off of this crazy ride please stop reading. For those of you who would like to continue on this crazy ride buckle up and hold on tight. Here are my most current thoughts and struggles:

  • I hate Carson’s wheelchair. But I also love it. It is the perfect chair for Carson. It positions him in a way that allows him to interact without struggling. However, It is also the biggest pain in my backside. Lifting and putting together Carson’s 40 pound chair is no easy task. Taking it apart to put it back in the trunk of my tiny car makes me want to set it on fire. If it didn’t cost twice as much as my first car I probably would have already done it. This frustration quickly turns into anger at the fact that I even have to struggle with a wheelchair in the first place. That brings me to my next struggle.
  • Carson is becoming too heavy for me to pick up. This is why the wheelchair is so important. Carson only weighs 22 pounds and is not even close to being on the growth chart for weight. It doesn’t seem like it would be an issue to pick him up. However, Carson is not capable of supporting any of his own weight. Those 22 pounds feel more like 50. Even once I pick Carson up it is becoming a danger to both me and him for me to hold him. Because of his spastic movements and poor muscle tone, he often hits his head on objects that are close to us. He also likes to play a game where he takes all of his weight and throws it backwards which has almost landed him in the floor a few times. I have had several busted lips from him accidentally head butting or punching me in the mouth. I literally get beat up when I snuggle with him. There is going to come a day, sooner than I would like, when I can no longer hold and snuggle Carson, and that breaks my heart.
  • Holidays are terrible. Every holiday ends up being a reminder that my child is not normal. Carson cannot participate in any typical holiday traditions. Sure I can force it and make these traditions happen. But it’s not the same and I know it. Carson cannot hunt for Easter eggs, he can’t enjoy Thanksgiving turkey, and he can’t open his own Christmas presents. I can’t buy him any of the typical presents you would buy for a two year old boy because no matter how much I want him to have that ride on tractor it is just a waste of money and a safety hazard. Needless to say holidays are not super fun at our house. Christian and I spend most of the holiday season stressed out and ready for it to be over. Don’t get me wrong I realize that holidays are about much more than traditions, but in the society we live in it is very hard to enjoy holidays for us. Birthdays are the only thing that I get to do on time. Whether Carson hits a developmental milestone or not he will age at the same rate as everyone else. That means that I turn into a crazy controlling stress ball to make sure his birthday party is exactly how I want it. It’s stupid I know, but its an outlet.
  • I have a different plan for Carson than most people and that is frustrating. My end goal is not to “fix” Carson. I don’t feel like Carson is so flawed that he needs to be fixed. What Carson has is not cut and dry. There is no textbook solution.  I have already accepted the fact that Carson is the way he is and he will most likely always be that way. My goal is to keep him from suffering. I work with his therapists and his doctors to give him the best life possible. Changing him is not the goal. I work to maintain his quality of life without putting him through unnecessary treatments. Not everyone understands or agrees with that, and I don’t expect people to. But it is frustrating to get the “if it were my child” scenarios because no one truly knows what they would do in that situation until they are in it.
  • I feel trapped. Not a second goes by that I don’t have a long list of worries in the back of my mind. Being a special needs parent is physically and emotionally exhausting and you can never fully get away from it. Even when I am not physically with Carson I never stop thinking about it. When I’m not with him I’m constantly worried that something is going to happen to me and I won’t be around to take care of him. Most mothers feel like no one can take care of their child as well as they can because no one knows their child as well as they do. This is especially true for special needs parents.
  • I have to force myself to not be resentful towards people with healthy children. It is so easy to become envious of all of the things that parents of “normal” children don’t have to do. It is easy to become angry when other parents get to do things with their child that I will never get to do with Carson. I am genuinely happy for people when their child is born healthy and when their child reaches a milestone that mine never did, but it also hurts. A lot. It is a choice to not become resentful. I have to fight my own jealous human nature every single day to keep from hating everyone else.
  • I am terrified to have another child because it may end up like Carson. I feel like I dodged a bullet with Cambri, and I am scared to push my luck. The guilt that comes with that is unbearable. I feel terrible that I am scared to have another Carson. I love Carson, but I know that I physically and emotionally cannot handle another child with the needs that he has.
  • The past few months I have been confronted with the reality over and over again that my child will probably die before I do (I warned you that this would not be for the faint of heart).This is my secret struggle. It is a struggle that I cannot talk about with other people because it is obviously something no one wants to talk about. It is the giant elephant in the room that everyone is so desperately trying to avoid. The reality of having a child with an undiagnosed disorder is that you have no way to even guess what will happen next. No matter how hard or uncomfortable it is I need to talk about my child’s death. It is something I could very well have to deal with. Right now the only reason Carson is even still alive is because of medical intervention. This week is going to open doors to a lot of other necessary medical interventions because of some new issues. There will come a point when medical intervention will fail or there will simply be no other options. At that point medical interventions yields to divine intervention. Of course I know that miracles can happen and God can heal Carson, but at this point in our journey I don’t think that is God’s plan.

The past few months have been hard as Carson is getting older. What I have come to realize is that my struggles are not Carson’s struggles. My struggles come from a very selfish place. Carson doesn’t get frustrated with his wheelchair. I do. Carson doesn’t care about holiday traditions. I do. Carson doesn’t realize that he is different from anyone else. I do. Carson doesn’t care that he can’t play football like his daddy used to. I do. Carson is not the one that feels cheated. I am. When it’s time for Carson to go he won’t suffer. I will. At the end of the day my struggles are about me. I don’t understand why God gave me Carson. I never will. All I can do is go one day at a time and choose to have faith that my God is bigger and no matter what happens Carson has always been his. It’s easy to tell myself that I don’t deserve a kid like Carson. I’ve learned that this is absolutely true. I don’t deserve a kid like Carson. Not because Carson is unworthy to be my child, but because I’m unworthy to be his mother. It is humbling that God chose me to be the parent of a child who is so pure and innocent and full of unconditional love. No matter how much it hurts sometimes, I will always be grateful for that.

Then the eyes of the blind will be opened, and the ears of the deaf unstopped. The lame will leap like a deer and the mute will shout for joy. Isaiah 35:5-6

Another piece to the puzzle

It has been a while since I last posted an update on Carson. We have had a pretty long gap between major appointments. Since my last post we have learned a little bit more about Carson and added a few more pieces to the puzzle. Last March (as in March of 2014) Carson’s geneticist ordered an MRI to try and get an idea of what mystery disorder Carson has. We were referred from genetics to neurology and the MRI was scheduled for March 3rd. We never received a phone call about his MRI so we just assumed no news was good news. We went an entire year thinking this was the case. It was not until an appointment to discuss Carson’s hypotonia and spasticity with a specialist that it was brought to our attention that Carson’s MRI was actually abnormal. Some how there was a miscommunication somewhere and we were never notified. We were told that Carson has thinning of his corpus callosum (the part of the brain that connects the right side and the left side). Of course the first thing I did when I got to the car was google. Thinning of the corpus callosum can be caused by a slew of things. More than likely Carson’s was caused by his mysterious genetic disorder. There are varying degrees of severity. It can cause complete mental retardation and physical dependence, less severe symptoms, or no symptoms at all. Chances are some of you reading this have thinning of the corpus callosum you just don’t know it. Some common symptoms associated with this include: visual impairments, hypotonia, early feeding difficulties, high tolerance to pain, hearing impairments, chronic constipation, delays in attaining motor milestones, early speech and language delays, poor motor coordination, and an overall happy disposition. Anyone who has ever spent any amount of time with Carson knows that these symptoms are pretty much the definition of Carson. Because this has to do with how Carson’s brain developed in utero there is no way to treat the actual thinning of the corpus callosum itself. All we can do is try to treat the symptoms with things such as his cochlear implant, physical therapy, gait trainer, speech therapy, and glasses. Which leads me to my next update.

We have known for about a year that Carson can not see as well as he should. However, it was not until last Wednesday that we learned just how severe Carson’s vision impairment is. Some of you may have noticed either in face to face interaction with Carson or in pictures that sometimes it seemed like one or both of his eyes were almost crossing. This is called strabismus. Carson’s ophthalmologist confirmed that he does in fact have strabismus and we are not all crazy. He also said that anything that Carson sees, both near and far away, is most likely blurry and distorted. In other words he probably laughs at all of us because we in fact have four heads in his little world. We went to ophthalmology in February of 2014 to rule out a genetic disorder and since the last visit some of the nerve fibers on Carson’s optic nerves have died. This is rare in someone Carson’s age who was not born with it, but of course that is how Carson rolls. Once the damage is done it cannot be reversed. We do not know why he has lost some of his nerve fibers, and we don’t know if he will continue to lose more. We are meeting with his geneticist again on Friday, so hopefully she will have some ideas to look into. For now the course of action is glasses. This should help him see while also correcting the strabismus. We ordered his first pair of glasses last thursday, and they will be here in 2-3 weeks. We are now up to three artificial body parts (he just wants to be ironman). I’m just hoping ironman will be able to keep his body parts on. We aren’t so good with our ear yet, and hopefully adding glasses to that won’t make it worse. All we can do is keep our fingers crossed and invest in a lot of tape!

How Sweet the Sound.

1 year 2 months and 2 days. Thats 415 days, 9,960 hours, 597,600 minutes, or 35,856,000 seconds. That is how long we have had to wait to talk to our son. After endless hours at doctors appointments, therapy, and surgery this first chapter of Carson’s life is finally coming to an end. January 7, 2015 has changed our lives forever. There are so many emotions that come along with today. We are excited that Carson can finally hear us, we are still a little unsettled that he even has to go through this in the first place, but most of all we are relieved. We have a lot more issues to deal with than just Carson being deaf, but now we finally feel like we made progress. We still have a lot of work to do. Carson has less language exposure than a normal unborn child. He has a lot of catching up to do, and it’s not going to be easy. But to us this is just another bump in the road that comes with raising a special needs child, so we are ready to tackle it head on. Now on to the fun stuff!

The morning started out with Carson being hooked up to a computer to program his implant. They were basically deciding what the lowest volume setting and the highest volume setting on his implant should be. He could only hear sounds that his audiologists sent to his implant from her computer. He could not hear us talking or any kind of background noises.

This is his reaction:  http://youtu.be/lOytWU0AGO0

After his implant was programmed he was unhooked from the computer and his implant was turned on. At this point he could hear everything. This one scared him just a little bit, but he quickly recovers and we get some good smiles.

This is his reaction: http://youtu.be/B9WThUhhYhU

Although he was scared when it was initially turned on, Carson has done great all afternoon. He was smiling at everything before we had even left Nemours. After lunch I was talking to him, and he absolutely cracked up. He laughed so hard he couldn’t catch his breath. Unfortunately none of us were expecting this or had our cameras ready, so that is not in the video. We did video the rest of the conversation though.

Watch the rest of the conversation here: http://youtu.be/gopLcTUUaps

Give Thanks.

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As a special needs mother it can be very easy to want to turn my nose up at Thanksgiving. In a time where everyone is focused on what they have to be thankful for it can be very easy to let Satan tell you that because of your situation there is nothing to be thankful for. I have caught myself in these thoughts several times in the last few days. It’s not because I don’t love my child, and it’s not because I genuinely feel I have nothing to be thankful for. In fact there couldn’t be anything farther from the truth.
For any mother, especially a mother with a special needs child, it can sometimes be easier to throw a pity party than it is to get ourselves dressed in the morning. After day after day of putting our child’s endless needs before ours it becomes very easy to be so physically and emotionally exhausted that we actually have to make ourselves find things to be thankful for. But the truth is when we step outside of our bubbles and just open our eyes, the amount of things to be thankful for are endless. Between tube feeds, hearing aids, doctors appointments, trying every physical therapy technique I can come up with, and forcing my child to both pee and poop (yes you read that right) I couldn’t remember what I had to be thankful for. Instead I only knew what I had to be resentful for. This is not the heart you are supposed to have going into Thanksgiving. The fact of the matter is yes I have been dealt some cards that others may think are “less than ideal” and yes my day-to-day life as a mother is a lot more challenging than some other mothers. But at the end of the day I am blessed with the sweetest, happiest little boy, and no medical diagnosis will EVER change that.
Once I stopped and really thought about my life the tables turned. Instead of it being easier to be resentful, it became easier to be thankful. If you are a mother of perfectly healthy children, be thankful when they are constantly getting into everything and talk back. Some of us can’t wait to have those experiences. If you are like me and are a mother to a special needs child be thankful that you have been blessed with another day to take care of your child, no matter what that entails, because we are never guaranteed tomorrow. No matter your situation be thankful for your support system. If you have a huge support system like us be thankful that there are so many people willing to help you. If you are having to do it all on your own be thankful that God made you strong enough to handle it.
There is always something to be thankful for. This week it took these people to remind me.
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This is “Carson’s Crew”. All of these people came out to represent Carson in the walk for hearing. We had the largest group out of everyone. The smaller group was led by my cousin Natalie who lives too far away to participate in the walk for hearing here in Jacksonville. She rallied a group together, and made her own walk for hearing. How can I not be thankful? How selfish is that of me to for even one second let myself believe that I have nothing to be thankful for? No, my child doesn’t hold his head up, sit up, or crawl yet and he is one year old. No, my child would not be alive right now if it wasn’t for a feeding tube. No, my child has never heard my voice. But my child has the most innocent and loving heart, and I get to feel his love every single day. And that’s more than enough to be thankful for.

Bittersweet

Image This last few months we have just done a lot of testing and waiting, so I haven’t had much to post until this week. Carson had his feeding tube put in on May 5th. Since then he has gained a little over 2 pounds. He has also pulled his tube out 17 times (thank God for nursing school!). His formula has been concentrated so that he is getting the maximum amount of calories per ounce and protein that his body can handle. Because of this he now has an electrolyte imbalance and is on a daily prune juice regimen for constipation.  A liver ultrasound showed that his electrolyte imbalance is not having a negative effect on his liver, and he has to get blood work done every few weeks to keep an eye on things. Because of all of the testing he has been stuck over 50 times. 

Even though he has gained 2 pounds he still has not made it onto the growth chart yet in weight or height (he looks longer than he is). If we were to remove his feeding tube today he would start losing weight again by this time next week. Because of this his feeding tube is being moved. NG tubes are not designed for long term use. His face is beginning to tear from the tape and get pressure sores from the tube. We meet with a surgical team next Monday, the 30th, to schedule him to get his tube moved directly into his stomach (PEG tube). Basically what will happen is he will have an endoscopy, and the surgeon will mark him based on a light that will be pushed up against the wall of his stomach. They will then make a small incision just big enough to slide a tube through. This feeding tube is more long term and he will not be able to pull this one out!

The next surgery that will be scheduled is for his cochlear implants. I was told by his speech therapist this last week that she has put in the referral for him to be evaluated by the implant team. Once he is evaluated we will have several appointments with an audiologist where we go over surgical procedure, product options, and what to expect as far as recovery goes. We will then meet with the surgeon. Carson has already had an MRI done, but if the surgeon requests a CT scan (which he probably will) that will push the procedure back. The surgery itself only takes an hour or so, and we will be able to take Carson home the same day. He will not be able to hear after his surgery. The implants have to be activated and this does not happen until 2-3 weeks after surgery to allow scar tissue to build around the implant. Christian and I would like to have his implants activated on his first birthday, but of course we have no control over the timing of his surgery. We are beyond ready for him to be able to hear, but we don’t like that he will have to have two surgeries within the next few months. 

I have had people asking me about his genetic testing. When we were in the hospital blood work was taken to test for Cockayne syndrome. Unfortunately we were given an estimate of 2 months before results would come back, so we are still waiting. We are starting to notice things that are making us question that quality of Carson’s eyesight. That is our next issue that we will be addressing. We have noticed that his right eye turns in a lot of times and that he does not seem to be able to see things unless they are pretty close to him. It could just be that since he can’t hear it is harder to get his attention, but we are going to get his eyes checked just to be sure. 

On a more positive note, there is something that we want everyone to keep in the back of their minds. His birthday is still 4 months away, but of course we are already planning. Instead of having a traditional party where people bring gifts we want resources to be put to better use. November 15th, the weekend after Carson’s first birthday party, there is something called Walk 4 Hearing in Jacksonville. It is a 5K that is in honor of hearing loss awareness. We are creating a team to walk the 5K, and instead of gifts we are asking for donations to Carson’s team. I cannot think of a better gift to give my child, and other children, than the ability to hear. With that being said we are having trouble coming up with a catchy team name. If you can think of one we are open to suggestions!   

 

Fingers Crossed

At 11 pounds 5 ounces several doctors that Carson sees are concerned with him being so little. He is not eating as much as he should which is just causing him to become further behind on the growth chart. Because of this on Monday he will be getting a nasogastric feeding tube put in. Hopefully this will help to get him caught up. We will have to stay at Wolfsons for a few days just to make sure Carson’s body tolerates the extra nutrients. Please continue to pray for our sweet little man!

Testing, Testing, and..More Testing

Our last genetics appointment was this past Wednesday. At this appointment we received several answers that only lead to more questions. The results from our most recent test came back. This test went inside every chromosome to look for abnormalities. What they found is that chromosome 10 is missing some genetic information, and chromosome 14 has extra genetic information. They have never seen a case with this combination of abnormalities, so they aren’t sure what that means for Carson. They are going to do more testing to check for a problem with glycosylation and to check for something called Cockayne syndrome. At this appointment Carson weighed in at 11 pounds 2 ounces and is still in the 0 percentile in height and weight and in the 1 percentile in head size.

Slow and Steady

Carson is finally starting to eat like a baby his age should. He is slowly starting to fill out and put on some weight. Last week he was up to 11 pounds 4 ounces. This is still extremely small for his age and he still has 0% body fat and is in the 0 percentile in his weight, but progress is progress! His kidney ultrasound from a few weeks ago came back normal, his barium swallow came back clear, and his heart is pumping as it should. It’s reassuring to get all of this positive feedback from all of the testing, however it still does not give us any answers. We are still trying to figure out what is causing all of our issues. The older Carson gets the more developmentally behind he is becoming, but if he continues eating like he is now he should catch up soon enough.

On a somewhat happier note, Carson got his first pair of hearing aids today. It has been a very bittersweet day. I know that the hearing aids are the first step to being able to hear, but it is going to take some getting used to. I’m terrified about the first time I take him out somewhere and someone looks at him funny because he looks different. It sounds terrible, but yesterday all I could think about was how it was the last day Carson would look  “normal.” Before strangers could not tell that Carson has problems, but now that’s the first thing they will notice. He is now completely vulnerable, and there is nothing I can do about it. It has just been an overwhelming day. A lot of my initial feelings and frustrations were brought to the surface again today. Just like everything else it will just take time to adjust to it. I just have to remind myself that all of this will lead to a better future for Carson. Here are some pictures from today. I may be slightly biased, but I have never seen hearing aids look so good!

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Update

Today we met with the geneticist again and Carson had his four month check up. The results for his MRI that was done last week came back normal, so there is nothing wrong with his brain. They also did a test to check his chromosomes and that also came back normal ( he has the right number of chromosomes-46). This is the first good news we have had for a while, but those results do not help to give us an answer. The doctors agree that there is still a problem and now more tests are being done to try and find out what could be causing the problems Carson has. The next step is an EEG, an EKG, an ultrasound of his heart and kidneys, and more testing of his blood and urine. This time they are checking the actual pieces of genetic material inside his chromosomes. One of the biggest concerns we are trying to find a solution for is that Carson has stopped gaining weight. He is in the zero percentile in his weight and even though he is on a high calorie formula we are not seeing improvement. If nothing changes and he continues to stay underweight we will be looking at placing a feeding tube. Please continue to keep our family in your prayers and pray that the doctors will be able to figure all of this out.