This time the tears of joy were not my own. Last Tuesday I had Dr. Appointments for Jasz. Let me tell you that EVERYTHING that could have gone wrong that morning did!! I was driving my parents Avalanche. I am not used to driving a huge truck especially not in Santa Barbara. Our appointment was at 10:30 with Dr. Kelts (the gastro-enterologist). Well I left before 9. My dad had asked me to check the oil level before going. SO I popped the hood...then could not figure out for the life of me how to OPEN said hood. After about 10 minutes of trying to open the hood and then trying to close the popped but unopened hood, I gave up. I drove the car to a GM dealership and meekly asked them if they could open the hood and check the hood. They took pity on me and did the task for me. ALl was fine.
Then I realized I needed gas . Well I don't know why (it's not like they were running a clearance special, but everyone was trying to get gas and it was going slowly. When I got to the pump I found out they were having technical difficulties with the pump. ARGHH!!! I was getting more upset by the minute.
I finally make it on to the freeway at 9:30...well last time it only took me an hour to get there...maybe I'll be lucky again. Well I would have been fine except I am driving a behemoth and I'm not used to it and it is SUPER windy!!! So I drove slower than normal figuring it would be better to be late than dead. I got to Dr. Kelts parking lot at around 10:50. 20 minutes late. but guess what? There was one spot in his parking lot but the big ole truck I was driving would not cram into the spot...at least not with this half blind woman driving!!! So, I had to leave his parking lot and go on the hunt for a spot for a truck in SANTA BARBARA!!! 20 minutes later I run into Dr. Kelts office in tears not even realizing I was 45 minutes late. They were awesome though. They looked at me and probably realized if they refused to see John I would lose it on them..so they said they would see me. But I then realized I had an appointment with Dr. Carter (the neurologist) at 11:30. There was no way I could do it . So Dr. Kelts said, "no problem, come back at 1:15 I have time, I can see John then." PHEW!!!
So then I head over to Dr. Carter's office, meanwhile John is unhappy at all this maneuvering. I refused to even try her parking lot. But one thing did go right. I found a legal street spot right in front of her office ...yeah!!! I walk into her office exactly on time.
Dr. Carter had not seen John walking. Last time she saw him he was pulling up to stand on furniture and taking a few side steps. She got teary eyed when she saw him. She told me, "I never in my wildest dreams expected this boy to be walking like this within 4 months of when I first saw him. I have never had a child respond so dramatically to the carnatine. It is nothing short of a miracle that he is doing all that he is." I believe it is the team of people he has helping him along with some help from above. From all experts who have been working with John. They saw him from the beginning. Not one of them thought that he would be walking so well within four months. Not because they doubted his desire to walk, but they felt his muscles would fail him. His heart overpowered his inabilities. To have his neurologist basically say that he has defied all odds is amazing. He is an amazing little boy.
She increased his Carnatine again. She said she was going to give his body as much as it would take. Anything his body can't use will get peed out so no harm. She also added Carnasine. The thing is Carnasine is only sold over the counter in gel caps made for adults. The adult dosage is 4 pills a day. she wants him to have one pill every three days. What is ironic is I have had conversations about how difficult it is for me to remember to take my own medication/vitamins. And frankly since I have had to focus so much on his I forget to take mine most of the time. Hears the thing John is on Carnatine twice a day and a vitamin twice a day. He also was on a laxative, but we switched it to probiotics once a day. I can't give him that at the same time as his supplements as we want those to be absorbed. So, if we miss a meal it makes havoc for his medication schedule as it is. Now I have one that is every three days. I am going to set up a calendar with an alarms...I need to schedule it.
I need to also figure out a way for all these schedules to mesh with a different than normal schedule. A lot of times our weekends are completely abnormal. Also with travel. any advice would be great!! i was asked why we are giving him another supplement if what he is on is curing him. Dr. Carter first of all feels the supplements can really do no harm and Dr. Kelts backed that up. She also reiterated that Carnatine was not the only thing off in his blood work. He has an enzymatic disorder that luckily can be corrected with a couple of supplements. Actually Dr. Kelts has already talked about his digestive tract not working correctly. Reading the material on Carnosine...it's not for his muscles but for his gut health.
I asked again if Jasz will REALLY need to be on these supplements all of his life or will it be something he can grow out of. She told me 2 things. That yes he has a disorder and we are replacing something that is missing from his body. She does not see his body being able to produce ti in the future.
But she also told me something else, "You know it is SOOOOO good we caught this as young as we did. I have had 3 and 5 year old's come in with similar problems. Once we correct the physical problem they still end up being behind because they are afraid. They are afraid to try new things and they are afraid of their peers because they always view them as stronger. The good thing about John is he is not afraid...he has no fear and it will not hold him back. He can do anything because his mind will not stop him." It was a beautiful thing to hear. He doesn't know that his body wasn't supposed to do certain things...so it keeps him from nothing.
After that high we made our way to see Dr. Kelts and John had his lunch between appointments. The appointment with Dr. Kelts was brief. I told Dr. Kelts I taken him off of the laxatives. he asked if the probiotics were working and I told him I though they worked better. He said, "I don't care what you use if it's working. Between the probiotics and the supplements Dr. Carter is using he should be just fine." He was shocked at how well he was getting around as well. He also told me that he was super intelligent from all that he could see. Further more he feels no reason to keep seeing him unless something changes. I asked him how long he would likely need to be on the probiotics and he said likely until he is toilet trained. We'll see I guess.
All in all it was very good news on all fronts. I am a little flustered with the supplement schedule, hopefully I will figure it out. And feedback people have for that one is welcome.
Until next time...happy reading!!