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....