So we have had one crazy weekend!!! Aiden is allergic to one of the antibiotics they put him on for his ear infection, although even being allergic to it his ears are looking great and you can tell hes feeling much better ;p
We had a crazy 1st bday weekend!! Sean our cousin turned 1 and our friend Piper. It was exciting to see their parents get to experience the first birthday traditions but a little sad on my part also. To get to see them walking around and opening their presents and doing the first bday cake thing makes me sad and I try to imagine what it would be like to see Aiden in his curly hair tottering around. I just have to keep reminding myself that those are my dreams for him and that he dosent know hes missing out on anything.It dosent make it any easier... I just have concentrate on how happy a baby he is...
I'm starting this blog to keep family and friends updated on our little man Aiden's progress through his fight with Ohtahara syndrome.
Monday, August 6, 2012
Friday, August 3, 2012
Rough week
So it has been a rough, tiring week. Mr squishy has been sick, Saturday for the first time we had to use aidens rescue med because his seizure lasted over 5 minutes long. It feels like just when we finally settle in and things are just starting to feel normal something happens.... I swear I loose a couple years of my life every time something like this happens.
We did take him into the dr because I was just sure that this was going to be the time that we got told he has pneumonia. Which is always a fear when aiden even gets the sniffles, and it's always a fear that we will have to have him admitted. To my surprise his lungs were fine but poor little man has a double ear infection. So mr man has been miserable this week with fevers all day and that in turn causing him to have about a seizure a day... Hes now on his second antibiotic and hopefully on the mend.
As much as it sucks for him to be sick and miserable and having more frequent seizures I am very thankful that really he has been able to stay reasonably healthy, this is his first ear infection and the colds he has gotten he has managed to come out of without getting pneumonia which is my biggest fear and what a lot of the kids w OS get and struggle with. I just pray this continues
On a different note we finally sent our bloodwork in to Boston children's hospital for use in their epilepsy study!!! It is so exciting that they are doing the research and it's in eyesight.... I would live for it to provide some kind of answers not only for aiden and our family but maby for other OS kids and for the future....
I also got to take the kids swimming this past week and Aiden apsolutly loved it!!! He was in there for over an hr kicking his legs and floating around it was just amazing!!! I do of course wonder if that is part of the reason for the ear infections... But so amazing to watch!!!
We did take him into the dr because I was just sure that this was going to be the time that we got told he has pneumonia. Which is always a fear when aiden even gets the sniffles, and it's always a fear that we will have to have him admitted. To my surprise his lungs were fine but poor little man has a double ear infection. So mr man has been miserable this week with fevers all day and that in turn causing him to have about a seizure a day... Hes now on his second antibiotic and hopefully on the mend.
As much as it sucks for him to be sick and miserable and having more frequent seizures I am very thankful that really he has been able to stay reasonably healthy, this is his first ear infection and the colds he has gotten he has managed to come out of without getting pneumonia which is my biggest fear and what a lot of the kids w OS get and struggle with. I just pray this continues
On a different note we finally sent our bloodwork in to Boston children's hospital for use in their epilepsy study!!! It is so exciting that they are doing the research and it's in eyesight.... I would live for it to provide some kind of answers not only for aiden and our family but maby for other OS kids and for the future....
I also got to take the kids swimming this past week and Aiden apsolutly loved it!!! He was in there for over an hr kicking his legs and floating around it was just amazing!!! I do of course wonder if that is part of the reason for the ear infections... But so amazing to watch!!!
Rough week
So it has been a rough, tiring week. Mr squishy has been sick, Saturday for the first time we had to use aidens rescue med because his seizure lasted over 5 minutes long. It feels like just when we finally settle in and things are just starting to feel normal something happens.... I swear I loose a couple years of my life every time something like this happens.
We did take him into the dr because I was just sure that this was going to be the time that we got told he has pneumonia. Which is always a fear when aiden even gets the sniffles, and it's always a fear that we will have to have him admitted. To my surprise his lungs were fine but poor little man has a double ear infection. So mr man has been miserable this week with fevers all day and that in turn causing him to have about a seizure a day... Hes now on his second antibiotic and hopefully on the mend.
As much as it sucks for him to be sick and miserable and having more frequent seizures I am very thankful that really he has been able to stay reasonably healthy, this is his first ear infection and the colds he has gotten he has managed to come out of without getting pneumonia which is my biggest fear and what a lot of the kids w OS get and struggle with. I just pray this continues
On a different note we finally sent our bloodwork in to Boston children's hospital for use in their epilepsy study!!! It is so exciting that they are doing the research and it's in eyesight.... I would live for it to provide some kind of answers not only for aiden and our family but maby for other OS kids and for the future....
I also got to take the kids swimming this past week and Aiden apsolutly loved it!!! He was in there for over an hr kicking his legs and floating around it was just amazing!!! I do of course wonder if that is part of the reason for the ear infections... But so amazing to watch!!!
We did take him into the dr because I was just sure that this was going to be the time that we got told he has pneumonia. Which is always a fear when aiden even gets the sniffles, and it's always a fear that we will have to have him admitted. To my surprise his lungs were fine but poor little man has a double ear infection. So mr man has been miserable this week with fevers all day and that in turn causing him to have about a seizure a day... Hes now on his second antibiotic and hopefully on the mend.
As much as it sucks for him to be sick and miserable and having more frequent seizures I am very thankful that really he has been able to stay reasonably healthy, this is his first ear infection and the colds he has gotten he has managed to come out of without getting pneumonia which is my biggest fear and what a lot of the kids w OS get and struggle with. I just pray this continues
On a different note we finally sent our bloodwork in to Boston children's hospital for use in their epilepsy study!!! It is so exciting that they are doing the research and it's in eyesight.... I would live for it to provide some kind of answers not only for aiden and our family but maby for other OS kids and for the future....
I also got to take the kids swimming this past week and Aiden apsolutly loved it!!! He was in there for over an hr kicking his legs and floating around it was just amazing!!! I do of course wonder if that is part of the reason for the ear infections... But so amazing to watch!!!
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