Therapy

So Aiden had his evaluation today and it was pretty much as I had thought... in most areas he's testing at 1 month old so he's about 2 months behind. It is truly amazing how far we have come because before this would have crippled me. But I have no other choice but to be optomistic, 2 months is easily made up, and with him being seizure free I totally think this tis possible especially with the little steps he is already making! So next is to figure out the puking and fussiness and crying so we can actually get things accomplished in therapy. We could be starting therapy within the next 2 weeks!

God works in such mysterious ways!

Its been a rough couple of days filled with a baby that can't be comforted, and being puked on several times a day. And having the realization that my dreams for life will now not be possible.. then in a moment that my little squishy is finally somewhat content he coos and I'm reminded it is the little moments that can change everything. Such a small thing, many times taken for granted but for us and our special squishy one little step to cross off the list of "will never happen" its just so amazing!

Quick update

So things are going pretty well, we have been off the prednisone and our crankiness is much better but not gone... since we've been off the prednisone we had a total of 5 seizures but since that week we havnt had any! Aidens been awake and getting so big! He is a wooping 17lbs and wearing 6 month old clothing!!! We've also started a new thing were I puke on mom! Not quite sure what causing it but its not fun... I swear I have trippled the laundry because its a huge puke that comes out his nose and just pours out... the dr however isn't concered since he's still gaining weight...

Next week we have one of our therapy evaluations and I'm curious to see where he scores, but we already know he's probably at least a month plus behind being as he really spent his first month sleeping.

Other than that we have a month off of softball, so we have been having a garage sale, weather pending. So that is taking up much of our time ...

I will update again after our therapy appointment

Three months old!!!!

So we had a total of 4 seizures the 3 days after we stopped the steroid and now have gone back to not having any!!!! It is still like walking on egg shells every day waiting for the other sho to drop .. and the days he had the seizures it just made my heart break... but we continue to take it one day at a time. We have had some problems with his eating and have got to the point a couple times where we debated putting his feeding tube back in.... but after talking to the advice nurse I'm 100% sure its the thrush still, and that he wasn't on enough medicine to get rid of it... so since yesterday things have already gotten much better ; 0 ) its just hard because things can change so fast and to the opposite day by day..

Our little squishy is 3 months old already!!! I cannot believe how much we have been through and how we have gone through so much in the 3 months..

So much is happening!

Ok so where do I even begin... well I got the call Friday from ohsu that they got the referral to see Aiden! So they will review his file and then pick the neurologist that best fits what Aiden needs. This is great news!!

So in the last couple of days we got to stop the steroid medicine which I am so excited about! And already the amount of crying has decreased... he still has periods of hours where he just cries... his eating has gone down, which is good but it at this time its almost gone too much in the opposite direction and now I have to worry weather he is eating enough.. so now we are closer to scheduling the g tube .. I worry that something may be wrong with his stomach because he went from eating tons sometimes 13 onces in a 2 hr period to now I'm lucky if he gets 6 onces and he's starting to throw up a lot after he eats, like he's throwing up what seems like all 6 onces he just ate... its amazing how things can change so much in such a short period of time.

The best day Ever though was yesterday I actually got him to smile!:!!! And then again this morning!!! This is such a great feeling!!! Its something as a parent I think we take for granted sometimes, but to hear that stome of these OS kids can take up to a year to have their first smile maks me so sad... so to see my little man do that makes my heart melt!

So we went exactly 2 weeks (14 days) without seizures... then on the exact 14 th day he had a small seizure... and then another day seizure free and then this am had another one... this is truly the worst feeling ever... we spent the two weeks with a miserable baby who was in pain and uncomfortable and cried most of the day... but we tried to enjoy every moment and second without a seizure but just waiting for the other shoe to drop and somewhat trying to prepare yourself... but it still is like a slap of reality reminding you that this is your life don't forget it... but I contine to enjoy the minutes we are seizure free and awake and hopefully smiling more!

Tomorrow we also have our therapy evaluation and I am so excited to gt this started.! I just know he's going to do great and it will make me feel like I am able to control something, and that I'm able to do something for him...

So I will update after the therapy appointment!

Update

So.... we are still seizure free!!!!! Whoohooo!!!

We are 2 days away from getting to stop the steroid and I am praying that little mans irritability gets better... I wont lie its been very trying on our whole family to have a baby that does nothing but cries...

So we had a neurologist apt and I am so ready to be done with this lady, I told her he has been seizure free and her answer was "well I'm not going to be optimistic " who says that? ! It has been a little bit of a struggle trying to get the appropriate referrals from the insurance to get to where we can switch but hopefully I can get it done soon.

Next week we have an appointment to have him evaluated for therapy so I'm excited to get that started right away, I think it will give me some ideas how to work with him and trying while he's seizure free to develop as much as possible.

I know i say this a lot but thank you everyone for continuing to think of my family and for all the prayers!