The last two weeks haven't been too eventful. Jason hasn't been "himself" with eating and drinking. He was doing really well but always before polygam he seems to get "something". I can't even tell you what it could be. His eating and drinking has been very slow and he has been a bit gaggy. He seems to stay healthy for 2 and a half weeks and just before polygam something changes. We are still managing well though having said that, just slowed down a little and I have had to really spend a lot of time encouraging him to eat and drink. Normally he drinks his milk himself but this week has been a bit of a battle. I am sure now that he has had his polygam that will help him along again. He has been very good though with eating most things I give him - all pureed foods. I have been doing lots of soups with added cream and high calorie additives - have to be creative. He even ate stew to my surprise which was very pureed but it had meat, veggies and rice and he didn't object. Maybe mommy isn't a bad cook after all!! Having been worried about calories I decided it was time to investigate these additive powders that you add to food to increase calories. I have chatted to other moms and Jason's dietician and we have started a product called Polycose. You add this to his food or milk which adds calories but doesn't change the taste or volume. Hopefully this will help and also not make his chronic diarrhoea worse. Worth a try, always a case of trial and error.
The chronic diarrhoea is one of our biggest problems. Jason has never had a solid poo or even a poo that looks a little formed. On Saturday we changed his nappy 12 times! It seems like it isn't a "tube feed" problem as most of the other kids with feeding tubes have the opposite - constipation. With Jason pooing like this he is never going to gain weight and also potty training is not possible! The doctors don't seem to have an answer for us though. I guess they put it down to the feeding tube and nutrition but even with him eating soups and stews etc., it still hasn't improved. This is one of the many things I need answers for. The amount of potty training advice I get from everyone is crazy. I know they mean well but they don't see how much this chronic diarrhoea is a problem. Jason is turning 5 next month and if I could potty train him, I would have a long time ago.
Bruce and Jason spent Friday in hospital for polygam and besides it being a really long day for both of them everything went well. His bloods showed that he still needs more water (hydration levels aren't that great), he needs folic acid for something to do with his blood cells and his bloods showed that some levels were low so he was prone to catching infections. So this could explain the gagging and slow eating and drinking. Thank goodness for our wonderful pediatrician who is always so thorough with Jason and examines him from head to toe and takes full bloods and a blood culture to make sure everything is fine. We have started the folic acid, were given a new vitamin to try and some nose drops.
We haven't managed to see the neurologist yet. For some reason they have had to cancel our appointment twice now. Hopefully on Wednesday this won't happen again. It is very frustrating when you have an appointment after waiting so long and on the day they phone to cancel. This has happened twice now in the past two weeks and this was also the reason why we never went back to the neurologist after Austria - the same thing happened where we had appointments and they were cancelled.
Finances are looking bad, the trust has almost come to an end which is a HUGE worry for us. Jason's expenses are exorbitant. We knew it was bound to happen but didn't realize that the funds would run out so soon. We have just been SO blessed to have a trust fund whereas so many families in the same boat haven't had the help that we have had from all the kind people out there that raised funds and donated towards Jason's trip to Austria and his medical costs. This week had us thinking how on earth are we going to afford to pay and care for Jason's needs on a monthly basis. It's so much easier when money isn't an issue. He can go to his speech and occupational therapy, we can see the neurologist and pediatrician, we can just order his milk and not worry. Now we have to consider how important these things are if we actually can afford them. We start thinking can we afford R200 for half an hour of speech and occupational therapy. Can we afford to see an educational psychologist to discuss where we are going with Jason and his schooling. It's a big worry, I have even considered cancelling the neurologist because just to see him is R1100 and that doesn't mean the end. If we go, will he require us to do more tests or to see more specialists or therapists?? The problem is we have so many unanswered questions with Jason and his health and mental state that all of these doctors, specialists visits and therapies are completely necessary to further his development and get answers for him. We can't just forget about it and hope for the best.
For all of us parents of tube fed children, it's a constant battle. Our medical aids don't pay for tubes, pump sets, specialized formulas etc. If our children don't have a "condition" on their list of conditions they will not cover these items under chronic. Also besides trying to feed and nourish our children we also have to pay for therapies because basically most of them are delayed with their speech and require occupational therapy and speech therapy to further their development. It's crazy, the medical aids don't question a hospital admission for dehydration or an illness which is usually related to the feeding tube but they will not cover the tubes and formulas that would help these children and possibly avoid a hospital admission in the first place. We all have HUGE expenses and our children have such needs, all necessary and not luxuries.
Faith is a funny thing, having been worrying about whether to see the neurologist again, my mom said to me "pray about it and if it is meant to be doors will be opened". Well my mom and I prayed and normally to see the neurologist you have to wait months. So I prayed and said "Lord if this is meant to be you will open doors and an appointment will be available". So I phoned and what happened, we managed to get an appointment the next week. In my heart I knew it was meant to be and "God had opened the door". But what happened, twice now the appointment has been cancelled!! So what does this mean?? Gosh I don't know, almost as if the door was opened then closed again. Now I started questioning is this meant to be then? BUT as with everything, things aren't going to just land in your lap and happen for you, you have to actually go and get them and work for it. The same as faith, we can't trust that God is just going to do everything for us. We have to have complete faith that things will come right and the doors will be opened but we have to also believe and do things for our self. God is with us every step of the way but he is not going to just hand everything to us. We have to have faith and believe. God is always there but sometimes we have to choose which direction to take. It's not always the right direction though and sometimes we have to learn from our mistakes. This week I have been questioning whether the neurologist is necessary and whether I should keep the appointment. I don't know what he is going to say, I don't know if it's going to be the right move to see him or a complete waste of money and time. At the end of the day we have to make choices. I hope seeing the neurologist is a good choice but I believe and feel it is a necessary step closer to helping Jason and getting some answers.