I've sat and started to write here several times for the last few months. Each time, I open up a little text box, and there are so many words, so many thoughts and feelings that all of a sudden a big blank happens between my head and my fingers...
I have updates to do... In particular, I owe Post Pals an update... So I must pay that debt first, and hope that it gets me started.
Every time I write an update I expect things to quieten down. I feel so humbled each time I open the door to find more post for my kiddies - even me (thank you Wendy for the oh so regular hand made cards). I do not keep track well enough of the beautiful cards and letters people from all over the world and for that I am so sorry. Often, I find pen and paper and resolve to keep note of you all. So far, I have failed miserably, and can only convey in these updates the smiles you bring into my home. Words are too few and too poor to express how I feel about this.
As ever, life continues to be a journey of ups and downs and unexpected pot-holes... quite a bumpy road this life of mine!
Oh my glory, I've just realised that I have not updated since March!!!
The big news for Tom is that we attempted to make do without tube feeding. He became very unwell during the first half of the summer term, with a lot of vomiting that I haven't seen for years. School was taking it all out of him, and between the exhaustion, vomiting and terrible temper, I became quite concerned. I did get an emergency appointment with his endocrinologist as the growth hormone treatment seemed the only new element. It was a good appointment - one of those doctors who listens to me and with whom I can have adult conversations.
On the growth hormone front, the treatment is working really well. Tom's growth has been exceptional. Possibly this is the source of the problem... Despite this fantastic growth, and true bravery from a little boy who really does not like needles, I have been utterly unable to increase his food intake, be it through the tube or orally. So... more growth, but no more food. Kind of like trying to run a big truck on the fuel tank of a fiesta...
My concern was that the GH was affecting his heart - so we concluded that checking his heart before continuing would be wise. I'm still waiting for the appointment, but other things have taken my attention, so I am waiting rather than chasing. The plan is to start again, but at half the dose to see how he does.
The issue of tube feeding reared its ugly head once more at that appointment - how unusual it is to have a child of Tom's age be tube fed. Especially without clear cause.
So I went home, to a half term house with Zack and Kesia in full-blown stress mode: shouting, crying, screaming, running away from home. Not to mention Tom refusing food, both mouth and tube. And I had pretty much had enough. Of making feed, of having to fight with Tom each feed time, of doctors looking at me as though I were the one insisting on tube feeding needlessly. So I stopped.
I explained to Tom that we were going to see how well he could eat. And I watched.
Long, painful 4weeks short...
He did SO well. At first. The first three weeks went well. He didn't eat loads, but it was regular, and he was drinking good amounts of milk. He even gained a little weight each week. And then, week 4, he just "couldn't" eat anymore. I can't explain it differently. He just wasn't hungry at all, even giving him access to the kitchen at will was no good. He lost 5% of his body weight that week.
As much as I try to keep myself together, my emotions run very high where Tom and food are concerned. Watching him lose weight was hard. On the one hand, I have to show doctors that I am doing the best I can to get him off the tube. On the other, I have to be answerable to family members who see Tom getting skinny and pale and listless.
End of week 4 we started night feeds again. Tom chose to do that rather than day feeds.
End of week 5 I had to start full feeds.
I've had to take him to the optician - he had some strange shadows on the white of his eye. She confirmed that it is a sign of malnutrition.
We're back on track. It's taking time to get him back to his version of full health. And it's taking time for my heart to mend.
I will write the rest a little later...
I have updates to do... In particular, I owe Post Pals an update... So I must pay that debt first, and hope that it gets me started.
Every time I write an update I expect things to quieten down. I feel so humbled each time I open the door to find more post for my kiddies - even me (thank you Wendy for the oh so regular hand made cards). I do not keep track well enough of the beautiful cards and letters people from all over the world and for that I am so sorry. Often, I find pen and paper and resolve to keep note of you all. So far, I have failed miserably, and can only convey in these updates the smiles you bring into my home. Words are too few and too poor to express how I feel about this.
As ever, life continues to be a journey of ups and downs and unexpected pot-holes... quite a bumpy road this life of mine!
Oh my glory, I've just realised that I have not updated since March!!!
The big news for Tom is that we attempted to make do without tube feeding. He became very unwell during the first half of the summer term, with a lot of vomiting that I haven't seen for years. School was taking it all out of him, and between the exhaustion, vomiting and terrible temper, I became quite concerned. I did get an emergency appointment with his endocrinologist as the growth hormone treatment seemed the only new element. It was a good appointment - one of those doctors who listens to me and with whom I can have adult conversations.
On the growth hormone front, the treatment is working really well. Tom's growth has been exceptional. Possibly this is the source of the problem... Despite this fantastic growth, and true bravery from a little boy who really does not like needles, I have been utterly unable to increase his food intake, be it through the tube or orally. So... more growth, but no more food. Kind of like trying to run a big truck on the fuel tank of a fiesta...
My concern was that the GH was affecting his heart - so we concluded that checking his heart before continuing would be wise. I'm still waiting for the appointment, but other things have taken my attention, so I am waiting rather than chasing. The plan is to start again, but at half the dose to see how he does.
The issue of tube feeding reared its ugly head once more at that appointment - how unusual it is to have a child of Tom's age be tube fed. Especially without clear cause.
So I went home, to a half term house with Zack and Kesia in full-blown stress mode: shouting, crying, screaming, running away from home. Not to mention Tom refusing food, both mouth and tube. And I had pretty much had enough. Of making feed, of having to fight with Tom each feed time, of doctors looking at me as though I were the one insisting on tube feeding needlessly. So I stopped.
I explained to Tom that we were going to see how well he could eat. And I watched.
Long, painful 4weeks short...
He did SO well. At first. The first three weeks went well. He didn't eat loads, but it was regular, and he was drinking good amounts of milk. He even gained a little weight each week. And then, week 4, he just "couldn't" eat anymore. I can't explain it differently. He just wasn't hungry at all, even giving him access to the kitchen at will was no good. He lost 5% of his body weight that week.
As much as I try to keep myself together, my emotions run very high where Tom and food are concerned. Watching him lose weight was hard. On the one hand, I have to show doctors that I am doing the best I can to get him off the tube. On the other, I have to be answerable to family members who see Tom getting skinny and pale and listless.
End of week 4 we started night feeds again. Tom chose to do that rather than day feeds.
End of week 5 I had to start full feeds.
I've had to take him to the optician - he had some strange shadows on the white of his eye. She confirmed that it is a sign of malnutrition.
We're back on track. It's taking time to get him back to his version of full health. And it's taking time for my heart to mend.
I will write the rest a little later...
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