So not much to report. Aiden is doing amazing ;) seizures are little to none I've really lost track and have stopped hanging on the date of the last one.
We are trying to replace his bottle meals w baby food and he loves it most of the time.
He is slowly doing little things like grabbing something, and is extremely close to rolling over. His favorite thing to do is bounce on his knees while you hold him and were working on him being on his hands and knees.
We have scheduled a video EEG on oct 9 and it will require an over night stay. I'm starting to have some anxiety about having to stay at the hospital... It's scary what could happen and all I can think is something is going to happen and their gonna want to keep him longer... But on another note I hope they finally capture one of aidens breath holding spells and we finally know for positive if they are just that or seizures.
We're also still after 6 months waiting on aidens special stroller/ wheel chair and taking him anywhere is starting to become really hard.i cannot wait to get it shoes more supported and comfy while we're out
Really that's all that's going on, we're busy with school (all 3 girls) and kaila is playing for 2 softball teams this fall season so were always at games or practices
I'm starting this blog to keep family and friends updated on our little man Aiden's progress through his fight with Ohtahara syndrome.
Thursday, September 27, 2012
Monday, August 6, 2012
Update 8/5
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...
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...
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!!!
Tuesday, July 24, 2012
Squishy Update 7/24/12
So Im slacking on keeping this updated so this may be a long post!
Things have been good and busy... Aiden is making great progress with the helmet, he is almost at the point where we can be done with the helmet, we are looking at another 3 centimeters in one area and that is with the improvement with him not wearing his helmet very frequent due to the weather. so that is excititing!!
His seizures are for the most part controlled, he is having them, and on our worst days he may have 2 of them a day. They dont last very long and sometimes he quickly recovers from them. Of course I would love to say he is seizure free but I think from where we were hes doing pretty good.
He continues to also make small improvement in his therapy, things have gone so much better now that the formula change has happened. We are able to go through a whold therapy without him screaming through the whole therapy. He is working still on rolling over and playing while on his side but we have also started working on him standing!! He loves it!!! It is so great to see him make improvements and see him enjoy doing certain things.
He is now eating solid foods on a regular basis and you can defintley tell when he likes certain foods over other ones...Our goal is to get him to where he is eating solids of what we are eating.. so we continue to work on that.
We are still waiting oh his special stroller, its killing me!! its getting harder for us to take him places and to have a place for him to be... everyday life has defintley changed. But he goes everywhere and does everthing with us... and for the most part he is a happy baby and things have slowed down and we are just able to settle in.
I continue to be very very active in the Ohtahara support group and i truly believe that without those wonderful parents this road would be so much harder!
Things have been good and busy... Aiden is making great progress with the helmet, he is almost at the point where we can be done with the helmet, we are looking at another 3 centimeters in one area and that is with the improvement with him not wearing his helmet very frequent due to the weather. so that is excititing!!
His seizures are for the most part controlled, he is having them, and on our worst days he may have 2 of them a day. They dont last very long and sometimes he quickly recovers from them. Of course I would love to say he is seizure free but I think from where we were hes doing pretty good.
He is now eating solid foods on a regular basis and you can defintley tell when he likes certain foods over other ones...Our goal is to get him to where he is eating solids of what we are eating.. so we continue to work on that.
We are still waiting oh his special stroller, its killing me!! its getting harder for us to take him places and to have a place for him to be... everyday life has defintley changed. But he goes everywhere and does everthing with us... and for the most part he is a happy baby and things have slowed down and we are just able to settle in.
I continue to be very very active in the Ohtahara support group and i truly believe that without those wonderful parents this road would be so much harder!
Friday, June 15, 2012
I am so excited!!! We are getting ready for the NW Epilepsy walk tomorrow morning and it is just so great to have so many people want to come walk with us!!! We tie dyed tshirts and made a poster and it is amazing to be able to try to get aidens story out there!!! I hope lots of people ask questions tomorrow and maby we can make some new friends tomorrow!!! Way to Go TEAM SQUISHY!!!!
I will of course post pictures as soon as possible!!!
Another great accomplishment has happened, our squishy is learning to stand!!! he got some leg braces and he has managed to be able to hold himself up enough that he can stand almost unassisted up against the couch.... it tears me up every time, to see him standing like that, something we never thought we would be able to witness. Thats our handsome little man doing things every day i never thought we'd get to witness Keep it up boobie Mommy loves you!!!
I will of course post pictures as soon as possible!!!
Another great accomplishment has happened, our squishy is learning to stand!!! he got some leg braces and he has managed to be able to hold himself up enough that he can stand almost unassisted up against the couch.... it tears me up every time, to see him standing like that, something we never thought we would be able to witness. Thats our handsome little man doing things every day i never thought we'd get to witness Keep it up boobie Mommy loves you!!!
Wednesday, May 23, 2012
Vent time!
So out has been over a week and we are still working on getting Aidens formula. And I have seen what not being on it is now doing to my sweet boy and it angers me! Spots all over his tummy that are red and sore and weeping, sore red butt, puking and just fussiness... Why is it such a problem to get this figured out? The insurance has denied it and even being double covered, the state won't pay for it unless he's on a feeding tube... Really what is the difference? You would think it would help prevent other health issues??? Uhhh it just angers me! Lol ok rant over for now...
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