Yes you read that right - we have a weight gain!! From 14.6 when I last checked to 14.9. I wasn't expecting it but decided to check how the scale was doing. At least this time it wasn't pulling a tongue at me!!
Last Wednesday Jason and I saw the educational psychologist. I was nervous for the meeting, I mean who isn't when it comes to a psychologist. You always think they are looking at you as a parent and judging you on your parenting skills! Before the meeting the psychologist had read this website in preparation for the meeting and also to save time and costs! It was a great idea as she had a large insight into the situation and the areas that Jason is battling with. At this stage with Jason only being 5, in nappies, having a feeding tube and the development delay we don't have too many options. All of them seem out of reach at the moment but that doesn't mean we don't have time to work on the areas that need working on. Basically our options are home schooling, a special needs school or a school with a facilitator. I am not keen on the home schooling although that will help with the "bugs" and "illnesses", it isn't ideal as I would prefer Jason to be with other kids to play with and learn from. The nearest special needs school that would suit Jason is 45 mins there and 45 mins back! The bonus would be they are equipped with the right therapists and speech and OT are included in the fees. School with a facilitator - I can't see this happening. Well not next year anyway! We discussed a school visit at the play school Jason is currently attending and also discussed the IQ test. The psychologist advised that we need to make sure that Jason is getting the best "academic" attention that he needs now and this was the reason for a school visit. At this stage, Jason can count to 10 (with help), he doesn't know his colours or shapes yet. SO we feel that he is fine where he is with Jeanette as this is what they are learning - he just needs to grasp it!! Jeanette is happy to keep Jason in 2013 so we have decided to keep him there another year, focus on getting him out of nappies, getting rid of the feeding tube and working on his problem areas like speech, occupational therapy and extra "academic" attention in preparation for 2014 school. She advised that ideally we need to increase his speech and occupational therapy sessions and have extra teaching attention (one on one). Ideally that would be great if we could afford it, so we will try and work on all these things. At least now we have a direction and know where Jason can and can't go as far as school is concerned. We will do the IQ test next year May/June in preparation for schools in 2014.
Jason's eating has been going well the past week. He is allowing us to feed him basically whatever I decide to whizz up and feed him. Stews and soups have become my speciality and I think this is the reason for the weight gain. I am trying my best to make sure that there is protein in his meals so the stews always have meat, veggies and gravy of course and the soups I normally add chicken. We haven't been able to give him pediasure for about a week now which is his formula for ages 1 - 10 years that is the high calorie food supplement but he seems to be doing great without it!! I am really pleased! He seems ok on yogurts which is great as I see their calories are pretty high as well. So I normally give him a stew or soup and then he gets yogurt as dessert! I finally have a picture to share of me feeding Jason (thank you Huipie) to give you an idea of how I feed him and what! In this picture I am giving him custard (200mls) with a syringe. Now if I gave him that same custard with a spoon (which he will allow), it will take about 45 mins. With the syringe it takes about 10 mins. So I am focusing on the taste, textures, swallowing and volume for now and we will focus on the spoon when we have mastered the rest. As Jason is fed 3 hourly we can't sit all day feeding him otherwise we will never get enough food in during the day. The idea is to eventually get rid of the feeding tube so the spoon will have to wait for now.
Speech is coming along nicely. I have noticed quite a few words and phrases being said this week. The other day he came running out of his bedroom with his yellow underpants in his hand. I said to him "and now?" his reply was "granny swim"! In December when we were on holiday he use to swim with granny in his underpants! Last night when Nicole fell asleep on my lap he patted her head and said "night night". When his light doesn't work he says to me "no power" - picked this up from our electricity cuts all the time. "No and ugh ugh" with him shaking his head has also become a regular word - guess is a common one for all kids though. So yes lots of positive speech happening!
School started on Monday again and I returned back to work from my maternity leave. Nicole is in great capable hands (with our domestic nanny) and it's wonderful having the extra help at home as well with Jason and Nicole. I am not use to having so much help so it's wonderful! I am loving being back at work and Jason is very pleased to be back at school! I am really blessed to have a half day job that is 2 mins away from home. Also they have been fantastic with seeing to Jason's needs when he is on holiday (again the feeding problem).
It's polygam on Friday already - gosh 3 weeks fly far too quickly. I was actually looking back to when we started polygam. Well it was started in January 2011 so a year and a half of hospital admissions every 3 weeks. BUT boy has it made the world of difference for Jason health wise! Of course the eating does help as well as we are off ALL medication. Medication free from taking I don't know how many different things for his illnesses and gagging! BOY he has come a long way in a year!
You guys still reading and following my blog or am I writing to myself????