Rough day

So we continue to be seizure free! But man is little man unhappy he has slept for maby 5 hours today, the rest of the time he is wriggling and flailing in pain.... it kills me ... he started running a little fever also today so I fear that something is coming. We took him into the urgent care and now fettl like we are truly his dr... the dr there had mike explain what he has and just said he could have a stomache ache from all the meds, and that the thrush could be causing the pain and fever ... but he was no help other tha n to listen to his lungs and rule that out. So tomorrow we call his regular dr to see if there is anything we can do... and hope we get some sleep tonight ...

I'm scared to death to put this in writing but my Little Squishy continues to be seizure free!!!! ( Hope I didn't jinx myself!) It is such a wonderful thing! Although he continues to be very irritable and cries for hours on end and is now on two more meds for thrush, he continues to defy the odds and continues to be seizure free!!! It really is amazing, the difference in the little guy; he's awake and seems to be more alert. I truly believe all the love and support and prayers have a hand in this so please everyone continue with the prayers! I just can't wait to go in and throw this great news in my Dr.'s face!!! Lol, I know that's horrible of me....

So on another note, we got the letter denying our request to do the genetic testing. They don't feel it's medically necessary; I disagree, and would love to be able to rule out that my girls may carry a gene that causes this syndrome. So it is a little bit upsetting. Also, we're still waiting to hear whether they will approve us to see a different neurologist. I will continue to update on my little man's progress....

On cloud 9!!

So I have been afraid to even whisper this but.....we are going on day 3 without any seizures!!!! Now if I could just get my little man a little more comfortable. His one med he's on makes him irritable and makes him have an increase in appetite. So its a vicious circle: he's starving to death and uncomfortable so he eats sometimes up to 13 oz in one sitting which then of course makes him more uncomfortable so when he is awake (which is quite a lot lately!!), he spends the time crying and nothing seems to help. Maybe I jinxed myself when I said I loved to hear him cry? Lol

On another note we finally met up with the amazing Kelly and got Aiden's pictures done and they are simply the most amazing pictures...EVER! I seriously can't stop thinking about them (see facebook soon!) and to know I will have these of my precious Little Squishy forever is amazing and so special I think I may just wallpaper my house with them! Lol

Thank you again everyone for all the words of love and encouragement. If you haven't already, go to Aiden's Corner on fb and share his fight with this horrible syndrome and to see what amazing people are doing for him and my family!

Update on Seattle appointment

Ok, so the appointment went pretty well, I think. The drive up there was good and we found it with no problems and with this being the first time I'd ever driven to Seattle on my own, this was a huge accomplishment! So we went in thinking they were just going to talk to us about the ketogeninc diet and really got much more than that. The neurologist went through everything with me from his birth on and unfortunately, because he is on the steroids right now, we would have to wait until he is fully off them before we can even talk about the diet. So in the next 2 weeks we will work on slowly getting him weaned off the steroids. Then she mentioned another drug that I had heard about, but that our neurologist kind of dismissed. The Seattle neurologist said she wants him to do a trial with this drug before the diet; in her opinion it's had good results and if we can stop his seizures, or decrease them dramatically, with the drug its worth the try. The down side with this drug is it can cause severe problems with his eyes. While on the drug he has to have eye appointments every 3 months, and it can also cause problems with the brain, so he would have to be monitored by MRIs. But at this point, she said if we can get the drug to work the risks are worth it and with increased seizures eye problems are also a risk, so either way we are faced with this problem. The most important thing about this neurologist is she took time to explain what she was doing while examining Aiden and had an optimistic attitude that there are other things to try and do to increase his quality of life. This was such a relief. Our neurologist now lacks that attitude and I believe so much can come from a positive attitude. One of the other things she mentioned was that it appeared that Aiden was bilateral which basically means one side of his body seems to be more stiff and affected than the other, and that means, or could indicate, that he has a malformation on his brain which could be the cause of the syndrome. And, again, its horrible to wish for something this horrible but if that is the case, he may, in the future, be a candidate for a hemispiherectomy; in some kids this can stop seizures and allow for some development, so I kind of hope this may someday be an option.

So much is happening: we now have appointments to be evaluated for therapies, an appointment for evaluation for the g-tube, and I got a couple referrals from the Seattle neurologist for a good neurologist at OHSU. After this last appointment with his neurologist, she basically screwed up his meds and if I hadn't been paying attention he would be getting double the dose he should be getting, so it's time to look for a new neurologist.

Aiden is doing really well since the 16th he has been eating all on his own, and has been acting like a normal baby! And we are down to 8-10 seizures a day which sounds like a lot but from the over 30 a day it is nice and I look forward to getting that number down even farther! And I dream of having him be seizure free!

The last couple days have been a little rough the steroid he's on has started making him irritable so he spends a lot of the day either just wanting to eat constantly, and just crying... it breaks my heart and so the last couple days I have spent holding him and trying to comfort him, I now know what it would be like to have a baby with colic. I just have to remind myself of the times where he didn't cry at all.

One of the other things were waiting for is to find out if our insurance will cover genetic testing that they are now offering in Chicago. Although it wont change anything it will let us know if our kids carry a gene or not....

So here's to another day and praying for everything to start fitting into place.

Thank you everyone for all the positive thoughts and prayers!

Update 6/21

So we had another neurology apt today and Aiden is doing pretty good! For the last 5 days we have cut our seizures from over 30 (sometimes 3-4 in an hr) to 10-14 and going hrs and hrs without any! It is so great! He is starting to act like a normal baby crying and he's up to eating all on his own and 8 oz at a time!!! Its so great to have my baby back ; o )

So we have our big apt tomorrow at the neuro science hospital in Seattle tomorrow and of corse I'm running around with my head cut off trying to get everything ready.... I'm nervous and excited ... and this is just the orientation where the tell us about the diet... so lets hope he's a candidate and that it will be something that will make the seizures go away! I will update everyone when we get done tomorrow evening! !!!

2 month check up

So Aiden had his 2 month check up yesterday and it was kinda a slap in the face... we wernt able to do his vaccinations because the dr was worried about what that could do to his seizures ... and with the meds he's on ... the hardest part is already seeing that he's not meeting his milestones .. I think @ home I can be in denial and tell myself he's gonna be ok he's already rolling over! He's gonna be the exception... so seeing in writting what things a baby his age should be doing is hard...

I am however getting excited about our trip to Seattle next week! I'm hoping maby the neurologist there have something else to add or that Aiden will be a candidate for the diet and that the diet works! So many hopes..

Update 6/14

So its been a little bit since I posted last, things have been a little crazy. We went to longbeach this last weekend for Kailas softball tournament and hagd a great time! Aiden did great being hauled around from field to field and having mom screaming like a crazy person lol.

So last week aiden stagryed having the infantile spasms and the dr prescribed another drug to hopefully stop those, so we started the drug Saturday and not only did it stop the spasms but also his regular seizures seemed to be cut in half! Saturday he only had 10 seizures all day!!! As exciting as this is the drug they have him on is dangerous and now we have to have his blood pressure checked 2xs a week and he has tot be seen by his neurologist 1xs a week... and have all kinds of labs done each week to check his blood sugar his blood count ect and thy said some kids have had heart failure due to this drug... so I am excited it seems to be helping, and scared to death were causing more problems... and its not a drug he can be on for any long period of time... so as the neurologist said today it could just be a bandage until we can get aiden on the ketogenic diet... I just don't know how we are going to afford all the trips to the dr 3xs a week....

Aidens first zoo trip


Aiden n daddy snuggles

Uhg...

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...

Zoo trip

So we got to go today to the zoo with mia for a school field trip... it went pretty well except the inevitable happened I had two of the parents ask questions I'm not so ready to answer... the mom who was the chaperone for mias group was like "wow he sleeps ALOT!" mmm then she said she had heard from her daughter we had been in the hospital a lot and I justed explained he has seizures .... then the questions... the hardest one being well do they say hell grow out of them gtnd have a normal life??? This has to be the hardest question to answer... and then to see handicap kids in wheegl chairs out in public, something u eouldnt usually think twice about now I tend to stare snd think will that be aiden? Will he get to be that old? And all I can think is please god let him either make it to that age or let him be better off than that.... this has to be the hardest part, apart from all the stares already @ him because of the feeding tube... guod please make this easier....
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Then to top it off after our good day yesterday, not so many seizures and eating by himself last night we had the scariest seizure ever where for what seemed like Forever he stopped breathing and actually went limp... I have never been so scared in my life and so apsolutly helpless. Please god I am not ready to give him back yet... please don't let that happen again!!!

Great apt today

So we had a follow up neurologist apt today and I'm feeling pretty good about it. I just went in with my list of questions and wasn't afraid of "offending " the dr by questioning her... we taked about my feelings on the drugs, why we wernt trying other ones and about some I have heard of working well with other kids that have this... so I feel like we have a goal and a plan on getting there... I still don't care for the dr, but I did find out that this syndrome is not reported anywhere so really there's no way to tell how "rare" this is because no one is really keepeing track and the dr we have said we are not her only patient with this . And I did see n her office that she does have some pretty big awards... so i think from here it will just be us being assertive in what we want.

Neurologist apt today

So things have been going a little better, we have gotten to the point were we are telling the neurologist what we think works better and what we want to do.... which is so much harder than u would think. I've always had the mindset that the dr knows what their talking about don't question them their the ones who went to medical school not me... so it was hard. Aiden was having more seizures than what we wanted, so we called the neurologist and the last time they told us to give him an extra dose of one of his meds he has been on since the beginning as he seems to tolerate it better, well it worked and didn't cause him to be too sleepy, so we thought that would be what we did this time, well it was the head neurologist who was on call and she told us to give him a larger dose of the other drug he's on but that one makes him more sleepy. So me and mike talk about it and decide we don't want to do that, that what we did last time worked better and had the least side effects, so we called her back and told her what we wanted to do, and that we didn't want to do what she had said... she was a little taken back for a minute, but agreed that if it worked last time we could do that. Its just hard because the head neurologist is negative and tells us "well there's really not a lot we can do, this is just happens with this syndrome" well I'm just not ready to give up... I know there are many drugs we havnt tried and I don't like the attitude that that's just how it is... so this is where we take charge and do things our way... and its pretty empowering and makes us feel like we have some control over the situation

June 3, 2011

So holly cow its already June! I feel like may went by in a complete fog. Aiden will be 2 months old already!!! He is getting so big already, even with still having his feeding tube in he's been eating for the most part on his own durring the day and is already 11lbs 13 oz!!!

He has been pretty much under control with his seizures, they are pretty short and sometimes we go a couple hours without any but his normal right now is about 2 an hour... but for whatever reason he stays the same for a week and then they get to were they're pretty frequent up to 4 an hour and we have to call the dr and get an increase in his meds... so thats where we are today... sitting here waiting for the dr to call us back...

Wte also got a call from the hospital in Seattle to have us come up for a orientation meeting with the neurologist to see if Aiden woul be a good candidate for a medical diet that is know to be an antiseizure med. The diet basically is high high fat and tricks your body into thinking its starving and so instead of using glucose for fuel it causes your body to use the fat instead .... so Wednesday the 22nd I have to drive up to seattle and if they determine it would be a good thing for him then he would be admitted for 3 or so days to make sure his body can handle the diet.

So hopefully the diet will be a good fit and it will help his seizures.

So we just go day to day and try to enjoy the best of each day ... which is a struggle but were learning ...