My positive parenting group talk went pretty well. I wasn't as nervous as I thought I would be but this was due to the help of load shedding (no power) and the low light. I didn't feel like I was in the spotlight with faces staring at me. Instead it felt a bit like a campfire story. Jason's history and story is so long so I tried to give a summarized version and then I spoke a bit about fundraising and income tax medical deductions for a family member with a disability. I tried not to make it all about my story and Jason and tried to keep it interesting and informative. There were about 10 people there including myself. SO I think I did ok.
Jason's polygam infusion was last Wednesday. Unfortunately the ward was pretty full and our isolation bed was taken the day before we were due to go. A room became available in the late afternoon so we ended up going then otherwise we would have lost the room and who knows how long the wait would be for another available bed. We can't afford to delay polygam too long otherwise Jason could get sick. I am not a fan of overnight hospital stays as most of you moms will know having to sleep on a chair but it was actually nice for Jason because he slept 80% of the time and we still were able to manage school and work the next day. Well I was there in form but certainly not "there". As nice as it was for Jason it wasn't great for me although I don't sleep at night anyway. Those chairs are just SO uncomfortable and trues bob the drip site wasn't the best which had the pump beeping every 30 mins to an hour the whole night - air bubble and pressure. All his bloods were fine. The usual low lymphocytes, high platelets. Lymphocytes help protect your body from infection and low lymphocytes can raise your risk of infection. Pretty normal for Jason. Don't ask me how to increase your lymphocyte levels. I guess this is all due to the immunodeficiency and his risk that he lives with every day. We did the urine test in the morning to check his protein creatinine ration and I actually forgot about this and haven't called for the results yet. Very strange for me. I am normally onto it the next day.
School has been going really well. I am amazed how well Jason is doing with his reading. The work they do with these kids are amazing. Jason and Bella are learning to read. I can't believe it. Our little man is learning to read and doing so well at it. I never thought this day would come. It's actually quite interesting how they teach them to read. Reading is done using the words and Makaton symbols so reading is quite visual for them. By learning the words and seeing the symbols they are able to "register" reading faster - see below the examples of what they are doing
Jason goes to speech/feeding therapy once a week where they are focusing on his eating. His speech therapist continues to work with de-sensiting his mouth with various mouth massage and they work really hard with his eating. Something we are now focussing on is chewing. We need to get him to master the idea that once the food is in his mouth he can't just swallow as he will choke but he must chew at least 10 times before he swallows. I am noting a huge improvement and more willingness to eat and try new things. He is a lot more interested in sitting at the table with us and trying the foods that we are eating - still soft foods but that is ok, it's something. Last night we had fish and chips. He sat dipping his chips in sauce and tasting the sauce and even bit and chewed about 3 chips. Tonight he sat and ate mash and gravy with the motivation that he can have his ice cream after. I never thought we would be in the position where we would be negotiating with Jason to eat food for ice cream. On Sunday my two kids were watching the "Frozen" dvd eating boiled eggs. Both my kids :-). We also did some butternut last week and he seemed to enjoy it. I am trying to incorporate more veggies into his diet.
We had our dietician appointment last week as well and unfortunately with Jason having Swine Flu he lost a lot of weight with the diarrhea. He lost 1.5kgs but did gain weight around his arms which means he has gained some muscle and he has grown in height. We can't afford to buy so many tins of pedisure a month so we are using the formula the government hospital can help us with. It is a lot inferior to paediasure and less calories but it does help financially. Night feeds we have to do paediasure as the other formula is too "oily" and not easy to mix and may clog Jason's feeding tube. Hey for you tube feeding moms I had quite a nifty idea last week. I brought myself one of those milk frothers from Spar for R39 and it works like magic!! Wonderful little gadget for mixing formula for feeds! Give it a try!
My latest mission was to do a newsletter for the school discussing income tax and medical disability benefits. I accomplished this mission and hope to help those with family members with a "disability" to benefit from the tax relief in relation to disabilities. Not everyone is aware of the changes that came into effect in 2009 where "handicapped" changed to "disability" which meant that taxpayers can claim for a much wider spectrum of disabilities.
So my next mission is to find a sponsor for Jason's school fees that are R5,000.00 per month (which includes occupational therapy). We are hoping to find a company or individual that would be willing to sponsor Jason, whether it be a month, a few months or a year, whether it be the full R5,000.00 or whatever they are willing to help with. R5,000 is 261.55 pounds and 410.94 dollars (just an idea for you overseas people). How I am going to do this I don't know but I am always up for a challenge and we really could do with the financial support. The sponsor would pay the school directly and the school would issue the sponsor/donor with a monthly invoice and receipt. I need to enquire whether we can somehow get a Section 18A receipt which would be a tax deductible donation receipt that the donor would benefit for when filing their annual tax return. If any of you have any contacts that I could email the flyer and Jason's school report to, please email me details. Our email is [email protected]. Please see the flyer below if you are able to assist or get involved in finding sponsors. Ask around, share the flyer with family, friends and companies. The more people that help spread the word the more chance we have of finding a sponsor/sponsors to assist us with our monthly expenses. The donor may remain anonyms as well as they would be dealing directly with the school. Fundraising is very difficult to do especially when you are doing it yourself and for your own child. I have run out of resources for fundraisers and as much as the fundraisers help I am out of people to assist as well. This is one way a huge financial burden would be lifted off our shoulders so it's worth a try. The school actually came up with the idea so I am now going to run with it.
So my mind never sleeps as you can tell. Always ticking away, always processing things and trying to make our life and Jason's life a little easier.
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