Boys and their scrapes

Yesterday I was helping Carl James with some of his medical needs. As I was helping him I happened to look down at his leg and I saw this fresh oozing wound. My stomach turned. It's on his leg that he doesn't feel very well (his left) and doesn't have much circulation in. Because of the lack of sensation and circulation, his body has a very difficult time healing wounds on that leg and especially foot. We have had a problem with sores on his left foot not healing and causing us to eventually have to amputate his left pinky toe (after 4 years of bandaging and babying it) so seeing a fresh sore on his leg isn't a "no big deal" type of thing. The wheels in my head started to turn "Is it from his braces? Maybe it's from his shoes that he wears without braces. What are we going to do? How can I protect it? Will bandages make it better or will it make it rub worse? Why is it wet and oozing? How bad is this gonna get? Should I call wound care? I hate that this happens to him so easily. Why does he have to have this trial? He can't go without shoes.

That will cause the underside of his toe to rip open again and we will be that much closer to amputating another toe. But he can't wear shoes rubbing that thing! Ahh!"

In the pictures it doesn't quite show the redness or the wet oozing but you get an idea

All of this went through my head in a matter of seconds. My heart started racing. The guilt was setting in of not checking his skin more regularly like the doctors had told me to do. Then my thoughts were interrupted with him saying "It's probably from me sliding down the stairs on my knees without shoes." My mind was brought back to all of the times I had heard the "thud, dun, dun, dun, dun, dun, thud" down the stairs the past few days. All of my thoughts and my mood immediately changed. I thought "Oh so this sore is from my son who is disabled being an active and healthy boy?!" Suddenly I felt excitement, joy and I admit a little bit of pride. We still had the matter to deal with of how to tackle this new sore but I was so happy to hear that it wasn't from bracing or shoe issues. It wasn't from something that festered over weeks without me noticing. It was from my son being a boy!

While I am concerned about the overall outcome of this new sore, I am grateful that my son can move around and explore and still enjoy some boy like activities! One thing he has taught me though is that pain is a good thing! Had he had normal sensation he would have stopped sliding down the stairs before it got to this point. Since then I have banaged the toe and used both medihoney and complete tissue and bone on it and the redness has gone down, and shrunk in diameter. My friend who is a nurse gave me the genius idea of drawing around the edges of the red to see if it goes outside the lines in the morning. Luckily it shrunk!

This is a picture after I put the medihoney on it.

I guess time will tell how the wound turns out but so far I am pretty pleased with the progress. 

Cub Scout Day

I write from a place today of awe and gratitude. There are so many times that we see the weaknesses or the evils of mankind. When you turn on the news or the radio, as you drive down the freeway encountering people with road rage, when we have our quarrels with family, friends, neighbors or coworkers the flaws of mankind become more and more evident. Today though I witnessed the opposite. Today I saw the strength of mankind through strangers compassion and consideration. It reminded me how much the small things we do really do matter. Today was cub scout camp day. I had hoped my husband could take my son so that they could have some father bonding time and I knew my son would enjoy it more with his dad rather than his mom. When I found out that my husband would not be able to get work off, I cried.

If he weren't disabled he could have joined the scouting group on his own without either parent but I knew he would need lots of one on one attention and would need help with toileting needs. Sometimes the hardest thing about having a child that is disabled is the day to day heartaches rather than the surgeries. Since my husband wouldn't be able to get off work it meant that I would need to get a babysitter for my 3 younger girls and impose on someone else's day. It also meant that I would be out in the heat at 7 months pregnant helping my son stay balanced, climb things and shoot the bow and arrow while stabilizing him in a standing position. I was really worried about this since I have been very fatigued lately from the pregnancy. I wasn't sure that I could take him or that either of us would have a good time. I wasn't sure how far the distance would be from one activity to the next since I had never been up to the camp. I decided late the night before though that I would take him.

My sister was very generous and even though it was last minute she said she would watch my 3 girls. I knew with my girls there I wouldn't worry and I would be able to concentrate on Carl James. So we all got ready for the day and headed up to my sisters and then camp. I got to camp much later than expected and was worried about what he had missed. The camp staff were very helpful in helping us find our group and even gave him and I a ride up the hill to where our group was. It turned out that we had only missed archery and the "leave no trace" activity. Soon after we arrived they were ready to move on to the next station which was the hike. The camp leader that was up in charge of the hike was very on the ball and noticed his crutches so she gave him the option to go try out archery instead of the hike since the hike was a steep hike. With a little coercion from me he decided to do archery.

Once again they gave us a ride down the hill and to the archery station.

After the archery he said "I was nervous cause I thought they were real bow and arrows but now I am glad that I decided to go here instead." After archery we went on a canoe ride where he got to have his own paddle which he thought was pretty cool. While there on the canoe ride I could hear him laughing at the funny things the other boys would say and do and so I knew he was getting more comfortable and enjoying himself. He always takes a minute to warm up to a group and so it was nice to see that this process was starting even though it was only his second activity with his scout group.

One of my favorite parts of the day was seeing how he reacted to the rope bridge. I had been asking him if he was going to try it and his first reaction was a straight up "No." So I decided to let him fall back in line and just watch the other boys. We continue to talk about it and his answer slowly softened from a straight up "no" to "I want to try it but I don't want to try it." Eventually his answer was "I want to do it so I can send dad a video but I kinda don't want to do it."

As the boys took their turns I watched his facial expressions and I could see that he was not only warming up to the idea but working up the courage. The time finally came for his turn and it was wonderful! He did an amazing job and at the end was as proud as could be! The look on his face was priceless! Later in the obstacle course there was a beam that the boys were to balance on. He absolutely loved conquering that! We actually had to go back through the obstacle course to get a video for his dad. :)

 

At the end of the day I was filled with joy and gratitude. I ached for him to have the experience that I knew this could be for him. For him to enjoy the company of the other scouts and the leaders and for him to be able to feel confident and accomplished as he completed each task. I knew how life changing an experience this could be for him and I also knew it could go south really fast. I had prayed that he could have the experience I hoped he could. I was irritated when I got to camp much later than expected but as the day unfolded I know the Lord was looking out for us and had an interest in our day and how our day went. He answered my prayer and helped us arrive at just the right time and had just the right people there to help this be a great experience. I am so grateful to everyone that took the time and noticed his special needs. As small or big as their accommodations were. It made all the difference.

My favorite picture of the day. I saw this proud look so many times through the day. It warmed my heart.

Imagine potty training for 7 years

 I hate potty training. It's messy, it's time consuming, it's frustrating and it's never immediate. You get messes on your bathroom floor, or worse your carpet, you have extra laundry and extra stinky laundry. It wears on  your patience and you know losing your patience will only make matters worse. You always have to pack an extra pair of clothes anywhere you go and ideally if you are potty training you should be home all the time for a given amount of time (each child is different). You make progress and then sometimes go backwards. A diaper can be such an easier way to live for a while. No rush to the bathroom, rarely accidents on the clothes, less laundry to do and hopefully no poop or pee on your floor.

So I usually wait to potty train. If my child acts interested we will go to the potty and we will do several trial potty training sessions from 1 day to a week depending on the child's interest but I always wait until my child seems motivated to potty train. My daughter is 3 and just this week decided it truly is important to potty train. She has been interested since she was 18 months or younger but it wasn't always consistent and she wasn't very successful. I am not good at the constant reminders or setting an alarm and if I do set an alarm I usually miss the window of when the child actually  needs to go. This is my fourth child and I realized I'm just not a good potty training mom. So I wait, I wait until my child is pretty much able to potty train him or herself. Sometimes I feel guilty as I hear other mothers talk about how they are potty training their child that is younger than mine. Sometimes I worry I made the wrong decision not pushing potty training more as I see their 2 year old being successful taking care of their own toileting needs but then the  day finally comes when my child is ready to figure this out by him or herself and I realize all is well. It worked out fine.

Now imagine all of the struggles you have found with potty training and imagine...you have done it for 7 years. The messes, the trial and error, the extra laundry, the stinky smells, the feeling that you are failing, the impatience at your child for not being able to succeed and the guilt for feeling that way. Then imagine...it will NEVER go away. There is no hope for a different lifestyle only maybe an improved lifestyle but still it will always feel like a little bit of potty training. That's part of what it's like to have a child with spina bifida. You ache for their frustration and you want to scream for yours.

There are times I feel selfish as a mother, because I am not wishing the spina bifida will go away for him, I am wishing it for me. Wishing he could independently go number 2 and I would never have to know about it. Wishing there was less laundry and that his bed didn't smell like urine from leaking out at night. Wishing I wasn't cleaning up poop stains, wishing I didn't wake up to do a cone enema first thing in the morning. Wishing we weren't fighting about catheterizing or diaper changes. Wishing life were simpler and pooping and peeing were easier. Wishing for the days when I took bowel and bladder control for granted.

The supplies gathered for a typical trip to the bathroom for him

Amongst the mess and the trial and error, we are able to bond. The time needed to care for his toileting needs is time that we have to set aside. So we make the best of it. We talk about what he wants to do for the day or how his day was. I ask him about his dreams last night and tell him about mine. I wish we were doing something different, I wish he didn't need this special care and that life was easier for him but at least it gives us something many families struggle to find and that is TIME.

Weight gain and motherly pain

I have watched my son's stomach grow and grow over the last several months. I have assumed that this is due to his constipation being worse and so I have tried to be more and more consistent with our bowel regimen and to switch things up a bit. He has had some minimal relief but not enough to ease my anxiety or the tightness of his shirt. It's hard to explain the pain a mother feels when she finds out her child is disabled or the pain she feels as she sees this disability cause him to struggle in life. It's hard to explain the pain you feel when your child stumbles over and over and in time you learn to "get used to it" or ignore it. Watching him fall to his knees used to make my heart drop in pain. Now there are times when other people are more considerate of him than me. I have to let the pain go or it controls me.

This is a new heart dropping pain. I knew he was gaining weight but when we went to spina bifida clinic and they put a number to it, it was hard to hear. 20 lbs in 9 months! The rest of the family eats the same thing. We haven't gained any extra weight. Why, oh, why does he? The dietician tried to help us examine our lives. "Is he eating his veggies, is he drinking lots of juice, is he active, is he on a schedule, what does he eat at school, what does he eat at home?" It felt like too much to bear. Someone dissecting my life. I felt threatened. I knew my son was gaining weight and fast. I wasn't sure what to do about it.  He is so used to being bloated I wonder if he knows when he is full but can you really limit a 7 year olds portions? I didn't feel right doing that. He is a growing boy and I know several boys that gained weight at this age. Still my concern grew. He already struggles to walk. Will his knees and legs be able to handle the added weight?

The dietician went on. This time with suggestions. More veggies, two servings of veggies but only one serving of the main dish, less carbs, more daily activity, wheelchair sports, etc., etc. I knew she was trying to be helpful. Every other year at clinic I always had lots and lots of questions but that day she had hit a sensitive spot. I was so upset I couldn't even be polite, I just tolerated her and what felt like her stabs at my motherhood. It was all so personal. I had already dealt with this struggle inside and come up short. I knew the answers and real life were in conflict. I worried there would be fights about food; never a healthy thing. I worried about starving my child. All I could do was continue to go on and keep things normal. The only changes we made were to make sure all of the children were drinking plenty of water. Once in a while we would tell our son that he had, had enough food (if he had at least 3 servings or 2 large servings) but even this concerned me.

The option to eat more veggies and less of the main dish is a good option. Veggies just aren't as filling and he is after all a growing boy, but it is an option that we are going to start implementing and just play it by ear. My heart aches as I button up his shirt and the shirt bunches up. My heart aches as I see him out of breath after a short bout of running. My heart aches as I see him sitting down and his belly scrunches up. If I knew this was only a phase and not a way of life I would be okay. I could handle it. Weight gain is never healthy but for him it means a lot more disadvantage. Possibly the difference between being wheelchair bound or not. I'm surprised at how deeply this affects me and therefore worried to put too much focus on it, or he will feel my anxiety as well and that will only compound the problem.

I'm trying. I really am but sometimes, not trying, is better. At least while you get your bearings and let go of the emotion that makes things so difficult for you. I know I need to figure out why this hits home so hard and after I do that I can tackle trying to help my boy be back to a healthy weight but first I need to figure out my issues that are weighing me down before I can help him with his.

Celebrating poop

When you have a child with spina bifida your whole life seems to revolve around poop or the lack of it. For those of you that have suffered with constipation or had a child that has suffered with constipation you will be able to appreciate this post much more fully than those who have not. :) My son, who is now 7, has spina bifida, part of having spina bifida is having what is called a neurogenic bowel. Basically the natural peristalsis of the bowel is severely impaired or nonexistent. Most children with spina bifida need to be on a daily laxative along with daily suppositories or enemas, or cone enemas which is basically irrigating the bowel to produce a bowel movement.

Carl James has been suffering with constipation pretty much since I started supplementing nursing with formula. Breast milk is a natural laxative but as soon as we added even a little bit of formula he started to get constipated and it has  only worsened over time. We recently went to the doctor and they told us since March he has gained 20 lbs (it's December right now). I had noticed over the last several months that his stomach just kept growing and the constipation was getting worse and worse. We have been in contact with the spina bifida clinic and changing his bowel regimen but it is a slow process and an adjustment in schedule which always takes time to implement. So I was and am curious how much of that 20 lbs is dried up fecal matter.

His regimen now is to take 1 1/2 pills of Senna every night and then do the cone enema in the morning. Here is what the system looks like.....

I start by having my son remove his diaper and sit on the toilet. Then I fill the bag up with 500 cc of water and add 1tsp salt. Then I lubricate the cone and insert it in and open the valve to let the water flow. We leave the cone in for a while to allow the stool to soften and then we remove the cone and have him push.

 

This is where we hang the bag. It's nice décor don't ya think? ;)

 

We have been doing this off and on for a couple of years but in the last few months it has been a daily routine. He wasn't receiving any relief and so we changed things up and still was only receiving minimal relief. So here is the part I am excited about....I have always thought that sitting on the toilet (working against gravity) was counterintuitive but I knew he would whine and complain about laying down in the tub but it was finally worth the fight. So I looked online for cone enema solutions. I was surprised to find many. As I was scrolling I found one that involves using lemon juice. When I am feeling a little sluggish I do something called a liver cleanse which is

 

The 1 Tbsp of Fresh Lemon Juice

1 drop of Lemon oil

1 drop of Peppermint oil

 

I always go running to the bathroom half an hour after this. So I figured lemon just made sense. So we changed our routine a little and had him lay in the tub on his left side. I added the juice of one small lemon to his cone enema bag and we also decided to wait a full 5 minutes before pulling the cone out. At first there were  not much results and so we decided to move onto his morning bath but then we realized we needed to move to the toilet and wow!!!! Can I just say WOW! Never have I been so happy to have a clogged toilet! It seems silly to be happy over a bowel movement especially a large smelly one but I was in tears!!! It had been so long and he has been so bloated. The doctors said the x-ray (of his bowels) looked good and he had hardly any stool in there but my mommy  gut new better. You shouldn't be able to watch someone's stomach grow over months (unless they are pregnant). He shouldn't fit into pants one week and then not the next.

 

If anything, my child having spina bifida has helped me appreciate the small things in life. Even if it is that I have the ability to relieve myself regularly :)

 

(I apologize to those of you that were offended or grossed out by this but I know we are not the only ones suffering this fate and I wanted to post not only my success but also my gratitude for something finally working!)



The diagnosis

I was pregnant with my first baby. The day had finally come for the targeted ultrasound. The doctor had told us about the 3d images and we were excited to get a glimpse to see what our son would look like, whose nose would he have, would he look familiar or at this stage to babies look like aliens. So many questions but mostly just excitement! This was one of the few appointments my husband could make it to and we were excited to be able to go together and check up on our babies growth. We went in the room and the sonographer started to look over our cute bundle of joy within the womb. She checked his heart rate and looked for fingers and toes, she checked his organs but...she kept going back to his back, after the third time I saw something that didn't look normal to me, there was a sac on his back, I thought "a sac.....a sac....I know I learned about this in anatomy in high school, this isn't good...come on...remember Megan....remember"

"I am going to get your doctor. Why don't you wait out in this room." I snapped back into the moment...."okay." I said. We waited in the middle of all the doctor offices. I told my husband that something was wrong and that the sonographer kept looking at something. He tried to reassure me that everything was okay, but I knew better, and later I would find out, so did he. After what felt like forever the doctor finally came and spoke with us.  Her words cut like a knife...."your baby has spina bifida. He may never walk, he may be incontinent of bowel and bladder and he may be totally fine. The range is so big, we just don't know. We will have to wait until he is born to know what his mobility is like. I am sorry. Do you have any questions?" I fell against my husband's chest and sobbed, a very quite sob, my heart was broken.

The next several weeks and months were filled with doctor appointments, lots of web research and explaining to friends, family and co workers what spina bifida is, to the best of my ability. The nurse at primary children's told me that most parents just want to start out and let their baby just be their baby. They don't want to worry too much about the details of spina bifida. Since they couldn't tell me whether or not my son would walk that seemed like sound advice and I felt the same feeling that she explained other parents feeling. I remember wanting my son to stay in my womb. Where it was safe and warm and where I could feel him kicking. Feeling him kicking was the only thing that got me through the next several months. Anytime I worried about his future and what his life would be like he would get extra wiggly in my stomach and I told myself it was his way of reassuring me that he was strong enough to handle the life he had been given. I really had no idea how strong my little man would actually be.

The time came for him to be born and I can honestly say I felt nothing but excitement. I was ready to welcome him into this world and give him the best shot a mother has ever given her son, or at least the best I could possibly do. :)



Here is his opening in his spine before they closed it.



I had no idea how much my love for him would grow from the moment I first saw and held him and how it would continue to grow. Because I didn't know this I could never have imagined the difficulties I was about to endure and the deep need for a shoulder to cry on. I grew up around children and babies and so I never felt fear at the daily tasks of becoming a mother. I was surprised how reluctant I was to touch him, he seemed so fragile and I felt so ill equipped to take care of his needs. I remember asking the nurses to come in and help me pick him up so that I could nurse him. He was hooked to monitors, oxygen, an IV, and had a catheter in. Also I couldn't touch his back. Then there was a lovely nurse that decided it was time to teach me how to unhook the things that I could and how to position the cords. It was that little bit of knowledge that made me start to feel like his mother. Later my mother helped me position him onto my chest and lay down with him. Up until that point I had been nursing him with two pillows on my lap to keep him in a good position without touching his back. He was two days old and in that moment that I finally felt my baby lay his head against my chest, then I finally felt like his mother and he finally felt like my baby. Maternal instinct kicked in.

The tears just flowed and flowed as I held him against my chest for the first time.

The week at the hospital was difficult and I never left his side unless another family member was there. After a week we were able to go home and I was able to just let him be my baby, for a little while. A week later he started to show signs of hydrocephalus  . The doctors had warned us that 80% of children with Spina Bifida develop hydrocephalus. Still I hoped he wouldn't be one. He started to act lethargic and then stopped responding to sound. My mother told me I needed to take him in, I cried "but then they will do surgery!!" Of course that is what he needed and that is what we did. Back to the hospital we went. He came out from surgery and immediately reacted to sound again, his eyes got their sparkle back and I knew everything was better in our little world.

As the months went on we found out more and more about spina bifida, at each clinic visit and with each visit my heart seemed to break a little more. Time went on and we found out more and more about his limitations and abilities. The best part of this story is that I realized he was just like any other baby. He cried when he was hungry, when he learned to crawl he got into everything, his laughter lit up my world and his tenacity enthralled me.

We followed the nurses advice and we just let him be our baby. Sure there were doctor appointments, surgeries and therapy but at home he was just Carl James. We could tell early on that he had a goofy, sunny personality and we knew that though there were trials and there would continue to be trials our lives were better with him in it. I know many mothers that were either asked if they wanted to abort their child with spina bifida or the doctors tried to convince the mother to do so, but all are glad that they didn't. Having a child with a disability is hard but there are so many things we appreciate now that we probably would have taken for granted before. We have a different perspective now and we have a greater capacity to love and appreciate others and to appreciate the happy moments in life.

If you have been asked to go on this journey I can promise you that strength will be added to you, joy will enter your life, and your life, though difficult, will be better because you loved someone that at first glance may seem broken but on further examination is more whole than most people you have met or will meet in your life.