Just when I start feeling like things are starting to turn around a little, or that were making some head way with life its like we get it 3 fold again....
Aiden has started to get what I believe are infantile spasms, they are another form of seizure actvity, the are breif but can happen several times in a period of time, what they call clustering .. and with os (ohtahara syndrome) from what I've read it makes his prognosis worse, and they are very hard to control, and because of that and their frequency it is worse for Aidens development. I seriously feel like we can't win...
We have an apt on the 11th of july with a developmental and rehab dr so I'm hoping we can get an idea where he is developmentally and how to get or do the most for him as time goes on. This I am excited about so we can start trying to help him develop the most we can.
We also are at the point were we ar going to hafta make a decision on geting what they call a g tube, its basically where they go in and make a port/ tube from aidens stomache to the outside, its a longer term solution to the feeding tube that goes in his nose, as that one is only a temporary solution. He does ok for the most part eating on his own durring the day, but it depends on the day... last night we took his feeding tube out, he had been eating his bottle on his own for most the day, and the tape stuff on his tube was getting nasty falling off ect, so of corse today he isn't waking up to eat ... figures... so with the g tube its more permanent but he will still be able to eat on his own when he wants... not to mention we wont have to worry about the tape messing up his face and as he gets older him not pulling on it... it is just hard to make a decision to have someone do surgery and make a hole in your kid, its just one more horrible thing..
On top of all the emotional crap then there is the financial crap and just not making ends meet... and feeling so frustrated that thousands of shitty parents or people who use the system are getting all this help and people in our situation can't get any help.... not that I think because we've been dealt this we shouldn't have to pay bills but why can't we get some slack!!!!
Ok vent for today over.... here's to hoping things get a little better today...
Aiden has started to get what I believe are infantile spasms, they are another form of seizure actvity, the are breif but can happen several times in a period of time, what they call clustering .. and with os (ohtahara syndrome) from what I've read it makes his prognosis worse, and they are very hard to control, and because of that and their frequency it is worse for Aidens development. I seriously feel like we can't win...
We have an apt on the 11th of july with a developmental and rehab dr so I'm hoping we can get an idea where he is developmentally and how to get or do the most for him as time goes on. This I am excited about so we can start trying to help him develop the most we can.
We also are at the point were we ar going to hafta make a decision on geting what they call a g tube, its basically where they go in and make a port/ tube from aidens stomache to the outside, its a longer term solution to the feeding tube that goes in his nose, as that one is only a temporary solution. He does ok for the most part eating on his own durring the day, but it depends on the day... last night we took his feeding tube out, he had been eating his bottle on his own for most the day, and the tape stuff on his tube was getting nasty falling off ect, so of corse today he isn't waking up to eat ... figures... so with the g tube its more permanent but he will still be able to eat on his own when he wants... not to mention we wont have to worry about the tape messing up his face and as he gets older him not pulling on it... it is just hard to make a decision to have someone do surgery and make a hole in your kid, its just one more horrible thing..
On top of all the emotional crap then there is the financial crap and just not making ends meet... and feeling so frustrated that thousands of shitty parents or people who use the system are getting all this help and people in our situation can't get any help.... not that I think because we've been dealt this we shouldn't have to pay bills but why can't we get some slack!!!!
Ok vent for today over.... here's to hoping things get a little better today...
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