There has been plenty winter bugs going around. Almost everyone you see has it or knows of someone who has it. The kiddies at both Jason and Nicole's school have been snotty and coughing. Nicole (our daughter) has been sick for over a month, snotty and coughing. Jason managed to avoid it for quite a while - even ended up being the only kid to make school on the Friday (there are 4 kids at his school). I was quite amazed and excited that our immunodeficient child was the only one that made school. An excitement only a primary immunodeficiency mother would understand lol.
Last Wednesday we had our monthly dietician visit. Jason always gets weighed and measured. In the past month, his height and arm circumference has stayed the same but he has gained 500 grams which was fantastic news to me. I always find our monthly dietician visits difficult. Going through the where we are at with feeds, where we are at with eating, what he is eating and then the good old try this food and try that food. It's a mind set for me and I shouldn't let it bother me but it does. I know how well Jason is doing with his feeds and his eating, how great he is doing with eating yoghurts, custards, cerelac and tasting and trying new things at school. BUT after a dietician visit it takes me a day to snap out of the "if only Jason was eating and drinking on his own" phase. I go through this a lot and going through different foods and different scenarios of what we must try to get him to eat more orally does upset me. I know I am trying my best. I know what I am doing and I know at the end of the day it is up to Jason to eat. We can provide the food but we can't make him eat. What's that good old saying "you can lead a horse to water, but you can't make it drink". Well same thing with Jason. We can do everything in our power to try and make him eat, we can provide the food, go for the therapy but we can't make him eat. At the end of the day it is up to Jason.
No sooner after my Wednesday dietician wobbly day, Thursday came and I got a call at work from the school to say that Jason had a fever, was gagging and was not well. When I got there he had a temperature but was still dressed in his tracksuit pants and jacket and shoes which I quickly stripped off. (It's amazing how so many people don't know about fevers and how when a child has a fever, their body is on fire but their hands and feet are freezing and they shiver). Once his clothes were off the gagging already started easing off. He had overheated and was dehydrated. I got him home, he slept for the whole morning and by the time he woke up he was in good spirits. I didn't feed him in the afternoon, just gave him rehydrate to hydrate him and decided to hold back feeds until the night while he was sleeping. The nausea and gagging had stopped and he seemed to be much better. I took it down to overheating and dehydration (Jason can't regulate his body temperature and overheats very quickly). Thursday night he started gagging again and had another fever spike. So it seemed like it wasn't overheating after all. He was also having a lot more diarrhea than his usual diarrhea. I managed to give him 600mls of his formula during the night but Friday morning he still wasn't well. We kept him off school, I gave him his medication for the nausea and he slept most of the morning. He still woke up very nauseous and gagged the whole of Friday and the whole of Saturday. We couldn't feed him Friday or Saturday. His last feed was Thursday night. Our main priority was making sure he was well and hydrated enough to avoid a hospital admission. If Jason gets in that full on gag mode it is difficult to get him out of it and we usually end up with an admission. By late Saturday afternoon he was so much better and must have been hungry. We were ordering a pizza for dinner and he kept going to his ipad and kept pushing the "I want pizza button" lol. The pizza arrived and we all had our plates including Jason. The closest he got was the pizza to the mouth and a tiny piece of tomato in his mouth which he spat out. We managed 400mls of paediasure during Saturday night and by Sunday he was a lot better. Even managed a walk on the promenade where he was racing ahead of us. So feeling much better. He was back to his old happy, bubbly self. I am guessing it was a tummy bug but he has also started with a very snotty nose so it could be an infection. Everyone has it, all of us in the house have had it so it's inevitable that Jason is going to get it. The mucous is green which concerns me but I am suctioning his nose, doing all the sprays and medicines to dry it up and we seem to be getting there. He is on his chronic antibiotic so I hope that will help take any bugs away.
From being all down and depressed about his lack of eating on the Wednesday and then not even being able to feed him for two days made me realize that I must count my blessings. Jason isn't like other "normal" kids. Goodness we have done everything in our power to help him eat and continue to do so. Bruce and myself are doing our best and it also made me realize just how far Jason has come. This illness reminded me of the constant infections he use to get and all the hospital admissions we had, the constant vomiting. A year ago we almost lost Jason but he is here today and he is doing fantastic. I am a happy mother. Will I ever be a satisfied mother? No not until we have thrown Jason's feeding tube away and completed Jason's journey of course. BUT I am a happy mother and a very proud mother and a proud wife. I am proud of how far Jason has come with his eating, his speech, his sensory issues and I am proud of Bruce and proud of what a great father he is to our children and a great husband to me. Times are never easy for us, every day is a challenge but we take those days and we take them one day at a time because we never know what tomorrow will bring. Tomorrow could be worse or tomorrow could be a fantastic day. So one day at a time which is my motto in life. You can't tell what the future brings. You can't predict or guarantee anything. Just cherish the moments, if you are having a hard day, these days are going to happen, it's to be expected BUT we just keep swimming.
The progress in Jason is nothing but amazing. His special needs school was one of the best things that has happened to us and Jason. The amount of work and the amount of therapy he gets from one little school is phenomenal. His speech therapist and occupational therapist both work him hard and push his boundaries. One of the main things they have had to work very hard on is his sensory issues and desensitizing him. This has had a huge impact on his eating and the more they work on that area the better he is getting. Not just with his eating and speech but also with his social interaction. He is starting to get a lot more "touchy, feely" where he will now take your hand and hold hands or give you a hug. It still takes a bit of work but a hundred times better than he was. Then of course the main best thing that happened to Jason and to us is Nicole. God blessed us with such a cheeky, confident, arrogant, mischievous little girl that is such a character. We don't know where she gets the energy but from the time she opens her eyes until the time she closes her eyes she doesn't stop. She pushes Jason beyond his boundaries, I honestly believe she knows and understands that he is "special needs" and she just goes for it, she pushes his buttons and makes him angry where Jason doesn't get angry. She pushes him to eat, to drink, to talk. The two of them are nothing but amazing together and having Nicole was the best decision Bruce and I made.
It's school holidays now so both schools are closed for 3 weeks. Luckily for us, Jason's fantastic old school agreed to take the two of them for the 3 weeks so they are having their social time at school. Jason just feels like he is home, he loves his old teacher and old school and old friends and Nicole, well she fits in anywhere as well. We are keeping up Jason's speech during the holidays to try and keep his routine and therapy as normal as possible. We are having private therapy sessions with his speech therapist and today went really well. Today was the first day that Jason allowed the therapist to put her hands in his mouth (with a glove) and desensitize the area. It's a very important part of eating and by desensitizing the mouth, this will help with his eating.
Look at me, I have rambled on as usual. Next week Monday we have our second testosterone injection with the endocrinologist and on Wednesday we have octagam already and speech on Friday. So a busy week next week.