Our little man is doing so well. Words don't explain what a different child he is without the gagging and the vomiting. It has been almost 6 weeks since we started his new medication and we have a new child. Not only do we have a new child but Bruce and myself are so much more relaxed and happier - we have changed. For a change we are able to do things. We are able to plan trips and plan our weekends and we are able to get out as a family and visit our family and friends.
Last weekend we went down the South Coast to see Bruce's folks - Palm Beach granny and grandpa. The last four trips when we went to see Bruce's folks, all four times we had bad gagging and vomiting episodes, two of which we ended up in hospital. BUT now since the new medication we had a fabulous time and granny and grandpa were able to enjoy Jason without seeing him so sick. It was really wonderful for them to bond again and see that close connection they have.
Occupational therapy continues to go well. Jason LOVES OT and his therapist, he gets SO excited when we drive up that hill on a Monday. Speech therapy is also going really well. The therapist is busy with his evaluation and once that is complete they can start focusing on the right treatment for him. I must say he is getting better at his understanding and better with his words. He is at the stage where he copies really well. You say a word and he will copy the word. Not perfectly clear but you can hear the word is there. The main thing is he is progressing, he is improving and he is getting better and better. A lot of the parents that know what it's like having a tube fed child can vouch for me, once they start eating more and more, their speech improves drastically. We have to remember that Jason hasn't "eaten" orally in three years. When you eat, you use all the same muscles that you do when you talk. Think about it, when you talk, you use your tongue and your jaw. Now for these kids that don't eat, they don't use their tongue and their jaw so talking doesn't come naturally for them either. I am not too worried about it, we are going for the correct therapy and I know when Jason starts eating talking will improve.
Eating and drinking wise, still slow progress happening. He will drink water out a cup, tiny sips but they are sips. He likes his pringles, seems to like pronutro with mommy in the morning and has lunch with daddy in the afternoon. Small amounts, not enough to call it a meal by a long way but enough to say that he tasted the food. We try all the time to encourage him to eat and we will not give up. BUT we know that the only way that Jason will start eating properly is when we go through our second wean stage where we reduce day tube feeds and make him hungry enough to want to eat. It will happen, in my heart I know it will happen and we will do everything in our power to see our little man eat. It's just a matter of when and how do we go about this.
Weight wise he is looking good. I can see he is gaining weight which is fantastic to see. We are managing to increase his milk slowly. I try and feed him every 2 and a half hours during the day and we are up to 110mls. At night we are managing 600mls while he sleeps which runs from about 8:00pm to 4:00am.
Our next polygam hospital admission is on Wednesday. I can't believe how the weeks are flying!!
Last weekend we went down the South Coast to see Bruce's folks - Palm Beach granny and grandpa. The last four trips when we went to see Bruce's folks, all four times we had bad gagging and vomiting episodes, two of which we ended up in hospital. BUT now since the new medication we had a fabulous time and granny and grandpa were able to enjoy Jason without seeing him so sick. It was really wonderful for them to bond again and see that close connection they have.
Occupational therapy continues to go well. Jason LOVES OT and his therapist, he gets SO excited when we drive up that hill on a Monday. Speech therapy is also going really well. The therapist is busy with his evaluation and once that is complete they can start focusing on the right treatment for him. I must say he is getting better at his understanding and better with his words. He is at the stage where he copies really well. You say a word and he will copy the word. Not perfectly clear but you can hear the word is there. The main thing is he is progressing, he is improving and he is getting better and better. A lot of the parents that know what it's like having a tube fed child can vouch for me, once they start eating more and more, their speech improves drastically. We have to remember that Jason hasn't "eaten" orally in three years. When you eat, you use all the same muscles that you do when you talk. Think about it, when you talk, you use your tongue and your jaw. Now for these kids that don't eat, they don't use their tongue and their jaw so talking doesn't come naturally for them either. I am not too worried about it, we are going for the correct therapy and I know when Jason starts eating talking will improve.
Eating and drinking wise, still slow progress happening. He will drink water out a cup, tiny sips but they are sips. He likes his pringles, seems to like pronutro with mommy in the morning and has lunch with daddy in the afternoon. Small amounts, not enough to call it a meal by a long way but enough to say that he tasted the food. We try all the time to encourage him to eat and we will not give up. BUT we know that the only way that Jason will start eating properly is when we go through our second wean stage where we reduce day tube feeds and make him hungry enough to want to eat. It will happen, in my heart I know it will happen and we will do everything in our power to see our little man eat. It's just a matter of when and how do we go about this.
Weight wise he is looking good. I can see he is gaining weight which is fantastic to see. We are managing to increase his milk slowly. I try and feed him every 2 and a half hours during the day and we are up to 110mls. At night we are managing 600mls while he sleeps which runs from about 8:00pm to 4:00am.
Our next polygam hospital admission is on Wednesday. I can't believe how the weeks are flying!!