With the Rickketsia I personally would like to take it further and see a doctor in Pietermaritzburg who specializes in this field. Jason was positive two years ago for the rickettsia antibodies and negative now. As previously explained, the normal pathology labs only test a specific way and this doctor has a different method of testing. There have been many instances where the local lab tests have been negative when this doctors methods have been positive - this was the case with my best friend (Jason's godmother). I know this will cost more money and I have been playing with this in mind for weeks but I need closure. I need to know for sure that Jason does not have it. I need to do everything in my power to make sure I am doing everything for Jason and not missing anything.
Otherwise Jason is doing well at school. He is really progressing and loving school and his little friends. He has been working really hard every day and it is showing in his speech, communication, understanding and sign language.
Eating is still going slowly. We have had to go right back again with Jason getting sick and losing so much weight. Feeding therapy is on a Thursday and Sarah is working with his sensory issues and oral aversion. She has to desensitize his mouth preparing it for eating. She uses a finger toothbrush and method of mouth massage to do this. It does really help and we are getting there. Textures are a huge problem, even with his yoghurt he sweats so much while eating it. The more therapy the better this will become. We really need to increase therapy and include some speech and sign language into his weekly schedule. Baby steps though. Hopefully we can have some extra therapy in the future.
So we still have good days and bad days. Some days we really battle with diarrhea and concentration at school. Some days Jason is full of energy and happy and other days he is really quiet and reserved. We just take things one day at a time and progress at Jason's pace. I have had to learn to be patient. Going back to night feeds I took quite a "knock" with that as for two months we had no night feeds. I thought we were on the path to finally getting rid of the feeding tube but unfortunately it wasn't time yet. He lost too much weight and his albumin levels in his blood were low. Not good when his body is showing signs of strain. So we took a step back and started night feeds again. I have learnt that I can't force the issue. I have to just have patience and go at Jason's pace. We will get there eventually.
On the cards this week is a trip to the dietitian for our monthly appointment - weigh in and measurements. The H. Pylori test through the lab. On Wednesday we have a Mother's Day morning at the school which I am really looking forward to. Wednesday night is parents evening and an occupation therapy demonstration and talk on "crossing the midline". A lot of kids battle with this and children who have difficulty crossing the body's midline often have trouble with skills such as reading, writing, self care skills, sports and physical activities. This is something the occupational therapist works with Jason in order for him to get the necessary coordination to perform simple daily tasks that he cannot do. As an example Jason often uses both hands when he is actually left handed. Because he has difficulty crossing the midline both sides of his brain are not communicating resulting in confusion and bad coordination and two unskilled hands. So a busy week this week. Raising a special needs child is a busy affair 😃!