The past three weeks have been pretty busy. We have seen the endocrinologist for Jason's third testosterone injection which is preparing him for his upcoming operation to correct hypospadias and severe chordee. We see the endocrinologist again in two weeks time for a check up, measurements and to see whether a fourth injection is needed. We have also seen the dietitian who we see every 4 weeks. Jason did lose a bit of weight due to him being sick with the rotavirus and rhinovirus. He lost about 2 kgs while in hospital and 2kgs for him is a lot. It takes forever to gain weight but so quick to lose.
Feeding therapy with Sarah is going well. We did miss out on some therapy in August due to Jason being sick but we are back on track and going to feeding therapy twice a week which is doing wonders for Jason. Sarah works hard with him on oral stimulation and is a huge encouragement to him with feeding. He really trusts her and the work she does with him is amazing. We have started including banana with his yogurt and Sarah has done one feed with mixed berries. We are slowly including different tastes and textures into his diet. The idea is to try and increase his calories during the day so that he does not need his night feeds to sustain his weight.
This week we have had a few days of diarrhea and a few gags here and there. I am hoping that he isn't coming down with something but we just wait and see.
Tomorrow we should get the results of the protein creatinine ratio. Last result was 1.21 and was quite high so we are hoping that this has improved and no need to worry about his kidneys.
Otherwise Jason is doing really well. He loves school and is learning so much. His speech is improving and we are noticing three word sentences now. We have to keep reminding him to "use his big voice" as he tends to whisper and not speak loud enough. He is learning his sign language as well which is a big help and he is a lot more confident with his speech now that he can get across what he wants to say. His attention span is something that is a bit of a problem with him. He loses focus and concentration very easily and listening and following instructions is difficult due to this. This is something we need to work on. I bumped into the new OT at school on Monday and it was such a comfort to me hearing her say that "Jason is such an intelligent boy". Bruce and myself have never underestimated him and we know he is capable of a lot more than he gives. Everything is going in but he battles to communicate. Communication is a huge thing for him. If he could talk wow we would see a lot of progress. We will get there and we certainly have come such a long way this year. We have seen huge changes in Jason. Lots of positive steps in the right direction.
It just shows you what the right intervention does for a child. I chat with a lot of moms with children with feeding difficulties, some have feeding tubes, some don't. I have definitely learnt that things don't happen over night, you have to work at it every single day and don't get despondent when you try and try and try and feel like you are failing. It's hard, it really is. Look Jason got his feeding tube at 15 months old. He is now 7 years, 3 months and only now we are starting to see results. Only now we are starting to feel like we are progressing forward. It has taken a LONG time, a lot of money, a lot of therapy but all of that is worth it because we are seeing the progress, we are seeing the results. I still take every day one day at a time with Jason. You never know what each day is going to bring. Some days are terrible and you feel like you can't carry on but God always gives you the strength and the courage to carry on. It's not just with feeding difficulties, it's with everything in life. Sick family members, marital problems, financial problems - some times you feel like you are in a sinking boat and you have nowhere to turn. Well all I say is pray about it. God knows what you are going through and he gives you the strength and the courage to continue forward - one day at a time!! Don't get despondent, keep the faith and never give up trying.
As usual I have gone on and on. We are almost done here YAY. Jason has had his boost which will help for the next three weeks. We have done bloods and urine tests and will see what those results are but at least we are almost done and our little man can receive the treatment that he needs. Thank goodness for medical aid, thank goodness for medicine, thank goodness for Jason's team of doctors. We are truly blessed.