These two friends are both friends that have recently become in contact with me through our similarities in life through Jason and their kids. It's really great having these two friends around. We all have that common denominator. One immunodeficiency and illnesses, the other a rare disease and feeding difficulties. They both remind me of when we started our journey with the feeding tube and learning about Jason being immunodeficient. The emotions they are going through now I have been through myself and still go through even now. You don't forget, you don't get over the trials and tribulations you go through in life. You just learn to deal with them a little better. The hardship and the hurt and the memories don't fade, they are with you for life. I am sure this is the same for a lot of you that have special needs kids, even if your child is tube free now. You never get over what you have been through and more importantly what your child has had to go through. Not just getting over it but you are actually never over it because it is a lifetime event. Feeding and weight issues are still issues for them. Every time their kids get sick, they re-live those memories, those worries and that stress. I often think of all of you, little Tayden, Joshua, Matthew, Tabitha, Poppy, Gemma and of course the amazing parents that have stood by them through all their difficulties. I don't think you forget these special kids and their parents. You have that bond, you have that connection.
Jason hasn't been 100% well. We have all had the head cold that I think everyone has had. Everyone you see has it. He has had it for about 2 weeks now and I have just been doing the usual meds, sprays and suctioning his nose to try and clear the mucous. The colour was green which is not good. With seeing the paed on Wednesday we put Jason on a 3 day course of antibiotics. With Jason we can't avoid it because if we do it can turn so quickly into pneumonia because of no immune system. Nicole has it as well and has been coughing for about a month now. Nasty!
We also repeated the protein creatinine ratio urine test and unfortunately on Thursday I received an email from Jason's nephrologist to say that it had increased again from 0.47 to 0.92. This has been extremely disappointing for me. I was really hoping that we were on the mend. The nephrologist has said that it could be due to the fact that Jason isn't 100% well which is elevating the levels. I agree with this but it does concern me because his levels have never been low or normal since we found out that he had chronic kidney disease last year May :-(. Anyway what we will do is wait for Jason to get better, give it a week and then re-test. The dreaded kidney biopsy has been on my mind a lot. I do feel in my heart that it is necessary and this will be the only way to really see what is going on. It is apparently a simple procedure where they go through the spine but with Jason no procedure is simple. The kidney biopsy and the muscle biopsy is always on my mind. I was hoping that we could do these at the same time as the urology procedure which will be around September. Not looking this way at the moment.
The second testosterone injection has been done last Monday. One quick injection in the bum. I haven't noticed too many changes yet but the endocrinologist says usually by the 2nd or 3rd you notice a difference. Once we have finished these we will be ready for the operation - EEEEKKKK!!