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.