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 Camp and Confidence

To only focus on my son's physical healing and to ignore his much needed emotional or spiritual healing would be a mistake. It would also be a mistake to not document some of this as well. I firmly believe in the power and confidence we are able to feel as we conquer our physical body and as we learn to use it to it's best ability. It's one of the many reasons parents put their kids in dance, gymnastics or on sports teams. It's also something that my son struggles with on a daily basis. He watches his sisters conquer climbing trees, playing on my aerial silks and running really fast. He rarely gets the chance to feel this same kind of success and the "I did it feeling." Yesterday he was able to have positive experience. That I wrote about on one of my other blogs. Here it is....

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.




The miracle of probiotics

Anyone that has a child with Spina Bifida will probably tell you that the chronic constipation and the diapering/toileting needs is the hardest part, or at least comes in as a close second. That's how it is for me at least. Even compared to the surgeries, hospital stays and the casting. It's always the little daily things that add up to bother us isn't it? It's the same thing here. My son has been on laxative since he was 8 months old. The older he got the more he seemed to need. We tried many forms of laxative to try and get a good bowel form and consistency and to keep him regular. Each seemed to have failed in one way or another. Miralax was always able to get him going but it always turned into diarrhea, we would back off a bit and then he would be constipated. Fen cho worked for a minute but then it wouldn't anymore. Chiroklenz worked great for a long time but his body seemed to adapt and it stopped working. Senna has never worked for him.

Right now his current laxative is an herb called Cascara Sagrada. It works wonders! The consistency is great and the frequency is much better than it has been in the past but what has really helped is putting him on probiotics. I have been told for years that I should put him on probiotics. My aunt told me when he was a young toddler, my mother reminded me through the passing years and once in a while I would hear a mother of a child with spina bifida rave about how much it helps. So why it has taken me so long is beyond me. I guess I felt like such a simple thing couldn't really help so much. I guess I felt that if none of the laxatives were helping why would probiotics help so much. I think part of me was afraid to try it and have yet another thing or idea fail me. I am so glad we are trying it now.

I went to the health food store, and picked out a probiotic with multiple strains.

I love both of these products. Especially the PB assist cause it does not need to be refrigerated 

I started him on a pill a day for about a week or two. I didn't notice any difference. So I decided since he has been so constipated for so long he might need a higher dose. I started giving him 1 pill 3x a day. It took about a week or so but I started to notice a difference. He was able to have a bowel movement even without the cone enema! We went on a camping trip and I packed all of his pills. I didn't give them to him even once. I totally forgot. So he went 5 days without laxative. We got home and I started him on laxative and probiotics and he was able to have a bowel movement the next day. That is unheard of for us! Normally a day without laxative would constipate him for 3 days to a week. This was 5 days without laxative and it didn't slow him down at all!

I am so grateful to the people who shared their experience with me and the people who kept reminding me to try probiotics for him!

Balance, harmony and motherly guilt

As I go through the journey of trying to heal my son I often wonder....."Am I doing this more for me or more for him? Will he feel like I am always trying to fix him instead of just loving him the way he is? Everyone says 'He doesn't know any different because he has always been this way'. I disagree, am I wrong to disagree?" It's funny how no matter how I approach dealing with his spina bifida I am always left with guilt one way or another. If I am doing all the doctors say, if I am ignoring some of what the doctors say, if I am following my mommy gut, if I am just loving him for who he is and not trying to heal the SB, if I am trying to heal the spina bifida or even a combination of it all. It seems I always feel like I am falling short somewhere or like I am messing him up (emotionally) in some way.

Many people have tried to comfort me over the years about him having spina bifida. One of the comments I get most often is that "He can still play wheelchair basketball". That's a great sport, that I hear many mothers rave about how much it has helped their child gain confidence. I am not dissing the sport at all BUT as a mother wouldn't you rather your son be able to run down the street and play basketball at the closest park? He wouldn't need a special chair, or a group of other kids with special chairs, he wouldn't need you to drive him an hour or so away, he could just have the freedom to go to the neighborhood park. It's hard having a child with special needs. I never truly understood the term special needs until I had a child of my own with special needs. They really do need extra care and have special considerations to take into place. We are going camping the end of June and packing for my 3 girls is so much easier than packing for my son. Isn't it supposed to be the opposite? :)

I work hard to try to find a balance for him and for I. A balance between trying everything we can to give him the best life possible (which to me means using alternative medicine when appropriate) and still letting him have a childhood. I am fortunate enough to live in an area where alternative medicine is rampant and widely accepted. This also means that I often have people coming to me telling me how this doctor or that remedy would help my son. I have no doubt that many things could help him in one degree or another but our schedule, my paycheck, his body and his patience can only handle so much. I am grateful for all the options out there but it does make me really have to pick and choose what we put into our lives and has me researching a ton. Sometimes it gets exhausting. I wonder if I am insane for thinking I can be successful in getting him out of diapers. I worry that I'm trying to hard and that it's a hopeless cause and I will look back with regrets for time lost and energy wasted. I also worry about the flip side of things. I worry I will think I didn't try hard enough, that I should have done more, that money shouldn't have been an issue, etc.

Sometimes support groups are great for these types of emotions. Other times they cause more of them. This journey though similar is still so very, very private and personal. So I challenge myself and I ask you parents of children with or without special needs, be kind. Trust that the parents whose parenting style you disagree with love their child just as much as you love your child and they are doing what they think is best for their child. Probably constantly reevaluating every choice and every move. We all have our limits financially, educationally, emotionally, physically and support wise. What one person can easily do with their resources could be an impossible feat for another with their set of resources. Even if it's something as simple (yet complex) as a certain mindset or a lack of education. We all have our blinders and are often unaware that we have them.

I love to write and I love to document my story but with each post that goes out there a little bit more of my heart and my experiences go out with it as well. That's a big thing for someone to trust you with. Cherish their experience, whether you agree or disagree with someone you are learning a little bit more about yourself each and every time. Be thankful for another view and something to either solidify your current belief or to make you question and look beyond what you are currently seeing.

The best of luck to you on your journey whatever it may be!!!

“Be kind, for everyone you meet is fighting a hard battle"
-Ian Mclaren

Progress 6-8 years

6-8 years:

Carl James was homeschooled all through 1st grade up until the last 5 weeks when I started to feel like I was going to put him into public school in 2nd grade. So I put him in school in order to get an IEP in place and to help him adjust to the public school setting. So at 6 years old we started catheterizing (for social reasons). After a month or two in second grade he learned  to catheterize himself and to change his own diapers, boy did that change my life and his confidence! We were pretty successful at him being mostly dry in between catheterizations but he would still dribble a little. The urologists recommended that he be on bladder medication but I didn't feel right about this and so we continued to catheterize and have him in diapers. I have an overactive bladder and I noticed that rubbing cypress on my stomach over my bladder seemed to significantly calm down my bladder spasms. So I have started putting cypress on his tummy in hopes that this will help his bladder as well.

He is such a goofy little boy.

 

It was this year that we had to make the hard choice of amputating his toe. The doctors had been threatening it since he was 2 years old and since the wound was so deep they worried about bone infection but we were very diligent about applying tea tree every day to keep it clean and it looked so healthy they felt it safe to continue with monitoring it and bandaging it but after 4 years of bandaging and putting herbs and oils on that toe every morning (not to mention having to avoid pools) we started to notice that we had to put herbs on more and more often. It got to the point where we were putting herbs on every hour and we knew that we were only prolonging the inevitable. I decided to stop putting herbs and oils on and see what happened. Two days later this is what his toe looked like....

 

We took him into the ER for an emergency surgery. We felt somewhat relieved at the idea of being done with this constant pressure sore. Here is what it looked like after amputation. Sadly over time his next toe in line started to rip the exact same way the first one did. So we are back to square one. I can say though that I am grateful that with the use of oils and herbs we were able to prolong the life of his toe 4 years. Not something modern medicine was looking too hopeful on. We have learned a lot since then though and we are able to keep his wound closed with much more success. If it does open it doesn't go very deep. Medihoney and Dr. Christopher's complete tissue and bone are a huge help as they are just the right consistency and wet enough but not too wet. I think as I massage his legs and put cypress and marjoram on them it helps his body heal his wounds better as well.


When Carl James was 7 years old he had to have another shunt revision (around his 7th revision and his 11th surgery, I'm losing count). This time was different because his left ventricle was enlarged but his right was collapsed. The doctors told us that they needed to move the shunt to the other side because his right side was getting worn out. It was a lot for me to hear. That meant twice as any incisions and cutting through his skull. I was anxious throughout the entire surgery. Normally he bounces right back after surgery joking around the first hour or two, eating in the next few and then back to his normal self the next day but this time he took a lot longer to recover. For two days he rested and when he walked he would hold onto things to balance (more than his normal). Emotionally it was one of the hardest surgeries for us to endure. He was in a lot more pain before surgery than normal, he was more vocal and his BP was really high. It probably doesn't help that I was pregnant during this surgery and my emotions were a little off kilter.

We went back a few weeks after surgery for a scan. Something felt off because the doctor had ordered a rapid MRI and they had never done that before. After the MRI the doctor informed us that he has a cyst on his brain inside his left ventricle. He said he wanted us to come back in 3 months to see how it is doing and that is where we are now. Waiting to get an appointment. I have started to apply Juniper Berry (as it is a diuretic) on the back of his neck in hopes that this will help his body absorb the fluid from the cyst. I will keep you posted on how this goes! If the cyst enlarges or becomes problematic (he develops symptoms) they will try to drain it through surgery using tubing but they may have to put in another shunt. Something I would REALLY like to avoid. So as I try to treat this with essential oils I feel like I am shooting in the dark but I have to at least try.

Between 6 and 7 years old Carl James started to gain weight more rapidly. He continued to gain weight despite us trying diligently to increase his fluid intake and increase his vegetable and fruit intake. We have tried to keep him active but as he gains weight it gets harder and harder for him to play and run like he used to. We are hoping that our efforts of going on family walks and eating better will help but realize that we probably need more than this. So we have started giving him Slim and Sassy 3 drops in a capsule 3x a day. We have only been doing this for about two weeks. We continue to work with his constipation using the cone enema as well as herbal laxatives (cascara sagrada) and oils rubbed on his tummy to help with digestion (dill). I am hopeful that we will soon see results from this regimen.



Progress 3-6 Years

3 to 6 years:

I'm talking about his medical issues at the moment but it's important to remember he is still a person. He was and is the funniest, happiest boy with the brightest blue eyes!

 It was at this point that things started to get a little easier. Doctor appointments weren't piling up as much and we were starting to understand more fully what his needs would be. It was also at this point that I started to realize  and cope with the fact that my child really is different, he really does have special needs and he is behind other kids his age. He was not a baby crawling around on the floor anymore, but he was a toddler crawling on the floor and that's not normal. Around 3.5 years old he went through a really combative and defiant stage. It seemed normal developmentally but not normal for his personality. Looking back I think he must have started to have some frustrations about how his 18 month old twin sisters could get around better than him. He was starting to realize he was different as well.

One time when he was around 3 or 4 I let him sleep in his braces. We had been gone all day and we were exhausted. Between being pregnant and exhausted from a long day and getting him and the twins in bed I must have just forgotten. When he woke up the next morning I took his socks off and this is what happened.....

Several layers of skin came off with his sock leaving the imprint of the lines in his sock. I was mortified and felt like an awful mother. It was yet another sign about how sensitive his skin is. You can bet I have never left him in braces overnight again!!

At 4 years old he still had that pressure sore under his toe and it had now been two years of bandaging that toe every single morning, first thing in the morning. We kept this wound clean from infection by diluting and applying tea tree oil to it as well as galbanum.









This was the year he had his first surgery for his club foot. They told us he would have to be in a cast for several weeks and told us that he needed to be non weight bearing for X amount of time. I was like "Yeah right! you keep an active 4 year old off of his feet after surgery when he can't feel his foot (any pain)!" I of course did my best to keep him busy with sitting activities but it was another testament to me that pain can be a good thing! This is a picture of the wound after several weeks of casting.

 

The summer of when he was 3 years old he had 3 shunt revisions, 3 in one summer! Up to this point he still wasn't catheterizing and was able to empty his bladder on his own. Constipation was becoming more and more of a battle and he seemed to need more and more laxative. He would get so backed up that when his bowels finally got moving he would cry and scream for several hours of the night when he finally got to the point of the diarrhea pushing through. It was awful!!

 

On to the exciting news....somewhere around 4  years old he learned to jump off of something and actually land it instead of  his knees buckling. Here is a video demonstrating what I mean.... 

 

At 5 years old he started kindergarten

He is so social and he was so excited to meet new friends. He had already been to preschool offered by the public school system so he was used to being away from me for a short while, riding the bus and having other people change his diaper. It was at this point that the doctors really started to push wanting us to start catheterizing him (for social reasons). I was uncomfortable with this idea as it could cause scar tissue and cause him to have UTI's, something he had never had before but many kids with SB struggle with. We sent him to school with his walker, diapers and extra clothes and the school was very accommodating. Overall the year from 5 to 6 were pretty slow and uneventful medically (thank goodness)! He did have a shunt revision which he seemed to keep having around every 9 months from the time he was two years old but no other major surgeries or injuries, yahoo! This was also the year that I decided to start homeschooling him which you can read about here. So it was kind of a relief that things were a little more calm medically cause I was freaking out inside about how to be successful homeschooling.

 

One of the most exciting things that year was that he learned to do a front flip on the trampoline...

 

 

 



Past Progress 0-3 years

Spina bifida details: 

Birth to 1 year:

We found out he had spina bifida when I was 19 weeks pregnant. I was induced at 39 weeks so that all the doctors would be there when he was born. He was born vaginally, we did not participate in the MOMs study as it was fairly new and we were very anxious at the thought of it. His lesion is L4.  His spina was closed the morning after his birth and because they had so little skin to work with they brought in a plastic surgeon. I believe this is a huge reason his scar looks so neat and clean. He was born with his left foot clubbed

 and had a series of casts on for the first 9 months of his life. After that he had to wear special shoes all day (picture below)

and then only at night until he was 2 to keep his club foot in the right position.  He was able to empty his bladder on his own and so he did not need to catheterize. He did not start getting constipated until we introduced formula when he was around 8 months old. We started with adding prunes and prune juice to his diet but it got so bad that he would have had to eat a diet full of prunes just to have a BM. That's when we started on miralax and had lots of diarrhea and never formed stools.

He had his shunt placed when he was 3 weeks old and didn't need his first revision until he was 2 years old, we were told we were so lucky, we didn't feel that way.  Here he is in the hospital....


At birth and for 9 months after he had no feeling beneath his knees. Once we started introducing some essential oils he slowly got feeling down his right leg, then in his foot, then his tiny toes started to wiggle (it was such a slight movement that we thought we were imagining it), over time he was actually able to bend at the ankle, that movement started out slow and gradually became bigger and bigger. His left leg stayed completely numb. In fact he broke his leg when he was just a few month old and besides the swelling we had no idea because he never cried. When we were finally able to get him in to the doctor (it was a holiday weekend) they informed us that he had fractured his leg and it was healed! We couldn't believe our baby had a fractured leg and we had no idea, we thought maybe it was a skin problem. During this phase of his life there were lots of doctor appointments and lots of occupational and physical therapy appointments. To get him to roll over, sit up unassisted, to tuck his butt in when he was standing and holding onto the coffee table (we had to work to strengthen his glutes and quads), and stand up on his own. He was around a year when we got him his first pair of AFOs.  Here is a video of my husband teaching him to stand the way that the Physical Therapist told us to teach him....

1-3 years: Carl James took his first few steps when he was 15 months old. They were possibly the sloppiest steps in the world but we were ecstatic! We were fortunate enough to catch it on tape. Unfortunately it was on my phone before smart phones came out, so it's a little grainy.

We slowly watched Carl James' walking improve. When he was around 2 years old we noticed he had a pressure sore under his pinky toe. It took time to learn that it was created from the way he walks and creates pressure on his pinky toe basically ripping the underside open. We worked diligently to bandage his toe first thing in the morning and put his shoes on as soon as he got out of bed. Nothing the wound care team told me to do worked. We eventually stopped going and treated his toe with oils (geranium, yarrow, and galabanum alternating) and herbs. Even 10 minutes with shoes off would tear that toe right back open and we would be back to square one. Extended time in the bath would emaciate the toe and we had to avoid pools while his toe was healing. It was somewhere during this time that we noticed his legs weren't turning purple anymore when I would hold him on my hip and they weren't red and splotchy. It wasn't until later (when I stopped and the red and splotchy look came back) that I realized it was the marjoram and cypress that I was rubbing on his legs when I massaged them. This was also when we noticed he was  starting to feel a tiny bit below his left knee, which I attribute to using Helichrysum and Frankincense oil. We continued to do our own little experiments to see what he could feel whether it be pressure, temperature or a sharp poke. He still lacked most feeling in his lower left leg but we could see there had been some changes right below the knee as far as sensation was concerned. Here is a short clip of him walking around 2 years old.