8 months old today!!! Update 12/14/11

So my big boy is already 8 months old!!! Wow how time flys! Things have been a little rough lately, as I posted before we are starting to see some break through seizures and that sucks... and he likes to scare mommy by having a temper and having episodes of holding my breath... which im sure are attributing to the seizures. The latest one was yesterday after getting his flu shot and immunizations.

We just had our Neuro Development apt at OHSU yesterday and it was once again a slap of reality in my face... its so easy to "forget" how behind he is on a daily basis while were at home in our own world. So they figured after 15 minutes of seeing him that he mentally and socially is at about 4 1/2 months and physically and motor skills hes still only at about 2 months... this is hard to hear. I spoke with our therapist who sees him on a weekly basis and she did say this is off some, some areas hes farther ahead than stated  but others hes not... Its getting to be a harder reality the older he gets as we start having to think about other therapy options for him and things that sound scary, standers ( a board they strap him to to allow him to stand upright) special bath chairs, special seats to help him sit ect...

They also dropped a bomb on me at the apt, and mentioned Cerebral Palsy.... saying that the tightness in his muscles are most likely due to the problem in his brain and they call that Cerebral Palsy... This being extremely hard to hear, but after talking to the wonderful moms of the OS support group and his therapist this morning, Cerebral Palsy is a very big spectrum and is not always what we think of when we hear that... but all in the same a very scary thing to hear...

On the lighter side, I am getting Sooo excited for Aiden's First Christmas!!!! I cannot believe how fast that came!!!!

I will post pictures of corse of that joyous occassion !!!

started eating food

whaaahh my baby, is getting so big already! he will be 8 months already on the 14 of december, and we have officially started solids! he does ok, i dont think he quite gets it yet and we can get a half a dozen or so bites in before he gets mad... but it is such a big step for us and as with anything with little squishy he will in time get to be a pro! he is very particular though and has decided the rice cereal tastes horrible and he'd rather have bananas ,lol

Feeling lost

So we have officially broke our no seizure record. In the last month Aiden has had 3... The last two yesterday then again today. As I sit here thinking of the thanksgiving holiday and what we are thankful for ( which is still many things) but its a little harder ... Just when u think life couldnt get worse, it seems to do just that.

I think its almost harder when u have a sweet baby who is seizure free for so long, and doing so well. Its almost a false sense of things being "normal" and when those seizures creep back up its such a severe blow to your false reality... It takes you back to those days of no hope.. And cursing the god that could let something like this happen to your sweet sweet little baby...

What you tend to learn is once time goes on, so do people, and your left alone in this horrible place. Trying to go back to the normal that you no longer fit into.

Finally got the results of Aidens eeg!

So finally after calling ,emailing,and then today calling again w a not so nice message I fi.ally got the call back regarding Aidens last EEG... The fits he is having are not seizures but just breath holding spells (naughty little squishy!!!) And the flinches hes having when falling asleep are not the start of infantile spasms!!! This is the best news ever!!!! Thanks again for all the prayers!

Update 11/2/11

So Aiden had his eye apt, and it went better than I had anticipated, he didnt throw a huge fit and cry! No instead after the nurse dialated his eyes and sent us back out to wait he fell asleep! But from what the nurse witnessed they believe he can see the dr said that everything is structurally good, he does have a slight stigmatism but there is nothing that they would do for it at this time, she said that it is very possible that he has moments of coming in and out of sight, or that basically the brain isnt registering the information right but without seeing it she cant say.... So we get to keep him seeing her on a pretty regular basis... And see what happens... they

We also had our consultation for the helmet... Of corse it was with Emanual, and it has just reiterated why I will never place my foot in their doors again!!! The dr was horrible! She either treated me like I was 5 or talked to me like I was a dr and knew what the hell she was talking about.... Then she proceeded in not so many words to tell me I was lying... I told her at night I turn his head and the fact he sleeps through the night he for the most part will stay that way, she flat out said I find that hard to believe, several times!! Then they proceed to tell me that the helmets are very rarely covered by health insurance, that they consider it "cosmetic" .... So I call the lady today because they said if anyone can get it through insurance its her... She basically tells me no, they dont ever see it covered and they can just give me the prescription and I can shop it around.... Neadless to say they havnt even tried to run it through the insurance.... Awesome!!! I wonder where they send their employees for customer service training??? Vent over... Lol On a happier note Aiden had such a great time on halloween!! He loved the front pack and we even gave him his first sucker!!! He LOVED it even cried when daddy took it away! Then we decided if he wants it that bad he'll work for it! Lol so we made him hold it and put it in his mouth himself! Lol he did it!!! Made my heart melt!

Pumkin carvin w the family

We are so blessed to have our little squishy here to be a part of this!

Trying to patiently wait!

Uhhh so I said I wouldnt do it this time, but I got an email showing that Aidens test results were in, so stupid me looked! Now im stressing out and anxious hear from the doctor. He mentions Aidens fit he had but I have no idea what any of it means... This one is even harder to understand... Uhhh curse modern technology!!!