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!!!

EEG

So friday Aiden had his EEG, it went as well as expected. He ended up getting so pissed he had one of his episodes, which I hate to see but was sadly excited they hopefully got his brainwaves and a video, so at least the doctor can witness what hes doing and can tell us once and for all if they are seizures! After his fit throwing he did give the nurses his aiden charm laughing and smiling and giving his pouts. Such a little charmer! He also did so good and went to sleep (what they needed him to do) and he did his twitches again, which again im excited they got to capture them so we can know for sure wether they are seizures or not... So all in all it went very good and now we just sig and wait to hear from the doctor. Always a waiting game lol.

On a happier note also we had our first big family outing to the pumkin patch. He was so good ! He ended up falling asleep and missing most of it but he was so stinkin cute doing it! He even got to play in the corn bin with his big sisters and sit on his first tractor! Lol

Were also starting to become a little mobile! Ahhh watch out ! Hes starting to push himself around on his back by kicking and pushing his feet... So matt time is a little more interesting I push myself into the wall and off the matt and face into my toys!

Well off we go to do some tummy time!  And I will update everyone when I get the results of his EEG test when I get them!

Can't believe I haven't posted yet

So we had Aidens first real on purpose laugh! Sophy was playing with him( mauling) him and at first I didn't quite get what I was hearing. But music to my ears! It's posted on my Facebook if you haven't already seen it. Then we went days with nothing even with my attempts to get him to do it again, so I and I started thinking it was a one time fluke. But last night while he was supposed to be sleeping I was loving on him and he did it again!!! I was laughing and tearing up all in the same moment! I've found it's actually in response to him being extremely ticklish around his chin neck area! Lol so great!

So we have officially hit the 3 month mark for no seizures!!!! Whhoooohooo!!! Turned 6 months and started laughing all in the same month! Time is flying right by and I wish I could stop it! So we do have an apt tomorrow for another EEG to see if the jerks he is having show up as infantile spasms..... I'm extremely nervous ... But hopeful, the neuro got to see them at our last apt and even took the time to go over his EEG and see if it was showing the pattern of infantile spasms, which it wasn't so I'm hopeful that nothing has changed. So I will update when I get the results which will be a while based on last time.... But I think I will wait till the doctor calls and if I can stay offline. Lol

Update on Neurology Apt

I know this is a little bit delayed, but we had our Neurologist apt last week to go over Aiden's eeg and find out what it means and where we go from here.

First to just say the whole feel of OHSU compared to Emanual is amazing! They had a volunteer sitting in the waiting room at ohsu doing beads with the kids... It just feels so much more kid orientated and friendly.

Our Neurologist is very happy with Aiden's last eeg and what he said was that all he had was the written report from the last eeg Aiden had at Emanual, but even on that eeg it showed improvement from the one prior. It angers me that we were never told this! His last Neurologist did not even bother to mention anything regarding Aidens last eeg... not to mention that there was improvement ! So he said we have had more improvement since his last eeg and his background activity that was once very disorganized is now normalized!!!! it is what he would expect to see from a baby Aiden's age!!! This is such an amazing feeling!!! He still sees seizure "causing" activity throughout Aidens brain so he is by no means healthy and "normal" but this is such a great thing! This just means that Aiden will have an opportunity to develop!!! To what extent we do not know but it at least gives us hope!

This also does not change his diagnosis... which I wont lie I was kind of hoping he would bring us in and say "oh I'm so sorry but I think hes been misdiagnosed!" but don't we all hope that when something this scary and serious happens! So what does this all mean? Well we continue what we are doing with meds and treatment (therapy ect) and hope that we just continue to see improvement and maby some lessening of the seizure causing activity? At one point he does want to try to wean Aiden down to 1 seizure med (currently hes on 2) but I was just not quite ready to do that yet for fear that the seizures will come back. The one med he wants to wean him off of is one hes been on since birth. The doctor says the 2 meds hes on can cause problems with each other and our main goal is to not have him sedated so he can develop as much as possible. So he did say we can wait until hes maby farther down the road of being seizure free before we start this. It makes me excited for him to ask my opinion and for him not to just throw medicine at Aiden, which has been a problem in the past with over sedating him and causing us to have to be admitted to the hospital.

So for now things are I believe as amazing as they can be!!! We continue to pray that Aiden just continues doing so well, and still take it day by day. It is kind of funny though because you get so caught up in the "day by day" that you don't plan for the future at all, I just realized the other day that Halloween is coming up and I get to dress Aiden up!!!!! I am so excited to be able to get to this point, 4 months ago I didn't know if we would ever get to do this, or be able to dress him up for the holidays!!! It brings some excitement into our very scary, sometimes hopeless world!!!

So be ready for all the mass pictures of Aiden in his Halloween costume!!!

Had to Share this

One of the OS moms shared this and It brought goosebumps and tears to me at the same time ( never had that happen before!) I know I will refer to this many of times, especially through the hard times when the question is always "why us" .  We are truly blessed with this special child!

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Update sept 21

So thing have gotten more cazy if that is even possible! I started watching two boys before and afer school, and mike got a second job! But all in all things seem to be slowly going in the right direction. Therapy for Aiden is going good, its hard with the other kids and all the running around we are now doing to spend as much time as I want on his therapy, but he is getting stronger by the day! The therapist did mention today she wants to call the dr and talk to him about maby getting Aiden one of those helmets... to help get his head rounded out because he always wants and turnes his head to one side. While I know if he needs it great lets do it! And its more common to actually see the babies with these helmets, but its one more thing to have to explain to people and really just one more thing ...... but I know really its just the part of our "new" normal... being out of my comfort zone. I'm already starting to wonder how its gonna work, lol how the heck w his already big head will he fit in his carseat!!! Lol

So the benefit for Aiden was a Huge success! It really is amazing to see everyone there to support you... again very much out of my comfort zone lol. I'm just speachless with all the love and support me and my family got from so many people you don't know and to have people you've never met know Aiden and know his story. This is my goal! I want his story heard, I want the next family rid with this horrible syndrome to be able to see things are possible and to maby take some pease in our story. Most importantly just to know they are not alone!

Thank you is not a strong enough phrase to describe our gratitude to everyone who help with the event, who came and worked without pay, who donated, bought raffle tickets and came for haircuts and who came to just support us!!

EEG Update

Ok the neurologist's nurse called back and basically said that there has been a big difference in the eeg from before where it was very disorganized to now where Aidens background is now normal and there are none of the burst suppression patterns that you see with ohtahara syndrome.

What does this mean exactly we're not sure. The problem she said is, it is a syndrome and we are comparing apples to oranges because they are 2 eegs seen by 2 different people and they say at the time you fit into this syndrome ... she said the dr is very optimistic on his new eeg and she isn't sure if this changes his diagnosis, but it dosent change the treatment. On our apt on the 29th he wants to talk about drugs and possibly weaning aiden off of the phenobarbital which scares the Crap outta me!!!! Just because this was the first drug he was put on and we have used it in the past to stop the seizures when they were out of control. I worry of corse that as soon as we change something that the seizures will come back. But the dr said there are side effects with the phenobarbital. So we will see what he says on the 29th.

She also said that the activity in his brain that is or can cause the seizures is not localized to any specific are just little areas throughout which is a little discouraging because it means there isn't one area causing the problem, which would indicate he dosent have a malformation in his brain and wouldnt be a canidate for the hemispherectomy (brain surgery)  but they can use that information for treatment because some drugs work better for different activitiy... good to know!!! I was also able to get a straight answer on what kind of seizures aiden is/was having he's having complex partial seizures... information we didn't even know before!!! So although I would have loved for them to say oh crap sorry there's been a mistake! That is not the case (yet) lol and it dosent seem like it will change the treatment or what is currently going on. So I will celebrate the great news and will have to start my list of questions for the 29th!!!:

What does this all mean your probably wondering? i do know that with normal brain waves he does have a greater chance of developing !!!! This of corse is our biggest wish and prayer!!!

On another note I would like to thank everyone who is involved in helping, donating and spreading the word about Aidens Benefit this sunday! It is amazing and I wont lie a little overwhelming how many people my sweet little squishy's story has reached!!! 

Time goes by so fast!

Our beautiful baby squishy is 5 months old today and its amazing to look back and see how much we have been through and how far he has come in such a short period of time!!! And in the same instance it seems like just yesterday we were rushing off to the hospital .... man do we love this little boy!!!

EEG

So due to new technology I was able to obtain Aidens EEG results online, Which is awesome!!!! But I have found this is also a Huge mistake!!! I cannot decipher what the eeg finding are... So after 2 messages to the Dr and an email the nurse finally called me back. What it does show is that there is definite improvement in his EEG! It does still show abnormal and that there is activity that can cause seizures, but he isn't having silent seizures ( ones we cant see) and there has been improvement and even findings of normal brain activity!!!! what this all means ... Well the nurse stated that she has sent a note to the Dr to please comment on the findings and to compare the findings and she will call me back hopefully tomorrow... this is why getting the results online is horrible because of course its a horrible waiting game. But for now this is great news!!! and hopefully this will give our little miracle baby the chance to develop, to what point we still don't know but I continue to stick with our motto... We will not let anyone tell us what Aiden will not be able to do, but instead give him all the tools to do all he can.

I will of corse as soon as I have any more news update everyone on what all this good news means for squishy!!!

Also dont forget the benefit for Aiden is this Sunday!!! Me and squishy will be there so anyone wanting to love on him is more than welcome!!! Thank you in advance to everyone who has and continues to support me and my family in this crazy ride our lives have taken!!!

Nervous about our apt tomorrow

So we have an apt tomorrow morning for Aiden to have another eeg to see what Aidens brain waves are doung, if he is having any silent seizures. I am so nervous to see how the test is going to go first off .. he is not going to like them messing with him. And of corse I'm nervous to hear the results. Please pray for good news for our little squishy he deserves the very best... id love to hear that his brain is working normally , but I know this is not a possibility. Its just so hard, to know babies can be born with horrible things and even with heart and other problems, and can be fixed and have a chance at a "normal " life but the brain is so serious and cannot be replaced or "fixed" it jusgt sucks ...

So pray for my little man tomorrow! !!

OHSU apt

Soooo we finally had our apt at dornbeckers with the new neurologist. It went amazing!!!!

They spent 2 solid hrs with us and even brought in a pediatrician to also assess and collaborate. The diagnosis has not changed and I wont lie I've somewhat let myself sit in denial for the last 2 months that Aiden has been seizure free. So it was a little hard to have all the things you already know spoken out in the air. But the new neurologist is very very personable and said he is very happy with what we have done so far and how well Aiden is doing. Which is great to hear!

Some of the hard things to hear is that many of the things Aiden is not yet doing, and some of the things he is does show that things are not connecting correctly in the brain. He may have problems with his sight, basically the connection in his brain isn't processing the information he sees correctly. These are all things at this point I secretly know but have been in denial about.

At this point though he did say that we will do another eeg, and based on what that tells us about his brain pattern, if he's having any silent seizures were not seeing, and to put it bluntly, how messed up his brain pattern is we can start trying to work on getting that as normal as possble so Aiden can develop as much as possible. This to me is such amazing great news!!!! To not have the attitude that there's nothing more we can do, or to just stay stagnant with his treatment waiting for the seizures to come back.. my whole goal for my little squishy is give him everything in this world to do all that he is capable to do... and I finally feel like his doctor is thinking ahead and helping me to accomplish this. He also referred us to the ohsu therapy program so maby we can get him some more therapy or maby even more specialized therapy.

So although its still a hard thing to deal with I am thankful we are making some progress! And with as happy as little squishy is with his smiles and coos it just makes my every day and I am thankful for that and can't wait to see what else he's going to do....

Getting so big

Part of our therapy is trying to get him strengthening his neck and turning his head around he's doing so good!

Some days its great to watch every little progress we make but its hard to see sometimes how far behind he is... and with the other kids how much you take for granted ... we also are working at getting him to look and watch an object....

August 19

So my mind and heart has been filled with such happiness and sadness all at the same time. There is a family right here in Vancouver that had a beautiful little girl who was diagnosed with the same thing Aiden has, unfortunately for them she struggled much more and passed away the other day. Please pray for healing for this family .....

It breaks my heart and puts me in such fear that this may someday be our road. The thing with ths horrible diagnosis is that things can change so quickly, and although Aiden is doing amazing that can change so quickly. So it is always like a big weight on my shoulders and mind

On a happier note it is just amazing how good Aiden is doing! Our days filled with crying have changed to some crying but hours of him awake and smiling and cooing like crazy! It makes it hard to get anything done! Lol I just can't miss a coo or smile! Also therapy is going pretty well he's tolerating it more and is starting to get stronger so I pray he continues to be seizure free and we can continue seeing him do all kinds of things!!!

So please again pray for the family that lost theit beautiful angel so they can heal from this horrible loss, they are in my thought ....

Our first captured smile!

My little man is getting so big! He's really starting to smile and coo and it is the most amazing thing ever! Just 3 short months ago I wasn't sure if we would ever get to see or hear those things. Every day he amazes me.

We started therapy Wednesday and he protested a little, but also smiled for the lady ... I look forward now every week to seeing what he's gonna do!

So there is a video of all the wonderful kids from the ohtahara support group, aidenj is one of them and it is the most amazing thing to see all theseg sweet kids!

https://sites.google.com/a/ohtahara.org/ohtahara2/video-library

Check it out andg bring awareness to this syndrome

Small update

So things r going pretty well... Aiden is still seizure free!!!! Thank god!!! Its amazing he is starting to get excited and kick his legs and coo and it makes my whole day!!! Its great to get to talk to him and have hgim react!!! I am so very very excited to start his therapy but am nervous to see how its gon a work... with his fussiness and crying its gonna be difficult to get anything done...

So he's still having issues w pooping, throwing up and crying. The dr says he has colic... we are going to try soy formula to see if that helps with the trowing up... I am hoping and hoping this will correct the problem.

Other than that he's doing amazing and I thank god every moment we are seizure free! !!

He is also growing like a weed!!! He is officially in 6 m old clothing and about to grow out of them! His outfit from the forth of july is already to small!

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!

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....
.
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 ...

Update 5/31

Well I wont lie its been a rough couple of days... we ended up having to put Aidens feeding tube back in and he went into his major sleep mode ... I think this has to be th hardest part, you have a baby that just lays there, dosnet wake up to eat and dosente cry.. and u just every couple hours put food into a tube.... then to top it off every time your sweet baby opens his eyes or tries to wake up he has a seizure. .
Yesterday was a little better of a day, Aiden was awake a lot durring the day and even took some of his feedings by bottle. We even got to do tummy time and I decided to shock mommy by rolling over... 3 times!!!

This really has been such an up and a lot of down rollercoaster, I try not to think of all the negative but it is so hard to be out in public and not look at every baby or little boy and think Aiden wont ever get to do that or be like that.... all the milestones you look forward to when u think of having a baby, walking crawling and the hardest part is laughing and smiling.. its hard to not just not break out in tears all day... I'm hoping as time goes on this gets easier...

On a better happier note, again I am amazed at people and their generosity, their willingness to help someone in a hard time, I am so thankful for everyone that has helped my family it really means the world to us

So tonight we had to play dr and put Aidens feeding tube back in.... it was just the topper to the horrible day... it just is suck a freekin up and down rollercoaster, and it sucks and is so hard to let go of the one normal thing I had with him.. there is just no bonding involved with feeding your kid through a freekin tube.... but constantly being stressed, is he gonna wake up to eat, is he gonna eat enough, will he take his meds.... this is my new life....

On another shitty note we had to also use his rescue meds for his seizures ... so here's to hopefully a better tomorrow ....

Rough couple of days

So things have been rough these last two days.. I don't know if its reality kicking in or the lack of sleep plus stress...

So we went to the genetic appt yesterday, stressed out to get there on time and to drive all the way to Emanuel again. We get there and the genetisist pretty much didn't know that the neurologist had given us the diagnosis, he said they had talked about it but that it was the neurologist who could make that determination ... that there was a medical paper written back in 2010 about the possibility of there being a gene that they think is associated with the syndrome... but that the paperand testing they were doing was in Japan ... and that he can write to them and see if they are offering testing or if they are doing just research, and if they want aidens blood sample to test, either way no matterwhat is determined there is still nothing they can do... and then he basically said that all other testing for anything else has been put to the way side because they have what they feel is a diagnoisis.... ok great... could have told me on the phone... and it wasn't something we already didn't know.... then to top it off there was a severly retarded girl in the waitingj room and all I could do is think that that is our future ..... its just so scary and angering and all everyone can say is how beautiful he is. . . And I know everyone just. Wants to be nice but it just hurts worse... then to top it off all I do when we're in public is stress about what if he has a seizure ... what if someone sees what if he does it when they're holding him....

Then to top it off today I tried to go turn in paperwork for a bill grant program we hagd been working on and the lady pretty much told me " uve had two weeks to get the stuff u needed sorry not my problem" I know she hags no clue what we have/ are going through but it just was the topper to my now constant nightmare....

Thanks for letting me vent ; o )

So we had to make the best of it and ky decorated aiden so that his feeding tube didn't look so scary




But he has been doing so good eating on his own we were able to take the feeding tube out wash him up and now he looks and smells like a new baby!

I also started his baby massage tonight which is a great tim for just me and him ; o )

Tomorrow we have his genetic appointment so we'll see what that appointment entails.....

My strength for today

Motherhood is about raising, and celebrating the child you have, NOT the child you thought you would have. Its about understanding that he is exactly the person he is supposed to be, and that if your lucky, he might just be the teacher who turns you into the person you are supposed to be - The water giver...

I saw this quote on facebook and almosgt felt like it was written for me...

Were home

So we are finally home and Aiden is doing really well... knock on wood... he is eating like a champ without us having to use his feeding tube which is great!!! He's keeping me up all night wanting to eat and being awake, so of corse I can't put him down when he's awake! We even got to go to big sister mias softball game last night : o ) and of corse we already had someone as questions... Mike was holding him and a girl came up to see "the baby" and saw his feeding tube, and of corse asked what is that? And mike told her and she asked if he was ok and mike of corse said...no... .. he is a much stronger person than me... I'm struggling with being in public and having the chance of Aiden having a seizure and people freeking out or asking questions ... Mike on the other hand dosent mind talking about it with anyone...

On another note, I have some of the most amazing people/ friends surrounding our family... my wonderful friend and her mom took my 4 legged babies after the people who wanted them so bad and insisted they had grown up with big dogs had them for less than 24 hrs and decided they couldn't take them... so it breaks my heart to sit in my now extremely quiet house ( sometimes) it just has a feeling of emptiness .... but I do know it is the best thing for my babies and they get to play with horsies their size! And to everyone family and not who continue to help us with the kids and meals and really anything we could need it has almost been overwhelming with all the offers of help and support I don't think there are enough thank you cards out there to thank everyone ...

So here's to another great day! And just learning to enjoy the here and now ...

Little update

So today was a good day I actually got to hang out with my little ky (not so little anymore) up at the hospital, I think it was good for us both. None of us have had much bonding time with Aiden or each other, I think it was good also to just be here and see what aidens days look like because sometimes the unknown is just as scary. Me and mike got taught how to put in his feeding tube if it happens to come out someething a couple days ago I was scared to death of. Aiden continues to eat from a bottle which is the highlight of my day and they are talking about letting us go tomorrow morning... which is so bittersweet ... it has a finalization to the diagnosis and our long journey

Little steps

So its been a very busy couple of days... and so mixed with heartbreak and joy...

So my wonderful sister found a support group online with parents with kids in aidens situation and though that I have got a lot of encouraging words and advice. Through some devine intervention there is a lady that responded who has a ten yr old daughter and they live in the Seattle area! It just so happened she was in Vancouver with her other daughter for something and took time out of her trip down here to visit us in the hospital and just give us advice and answered questions. It really just helped me realize although I was feeling detached from aiden and grieving for all the things I wanted for my son that its not about me.... I need to buck up and do everything possible I can do for him and even if that means holding and touching him..... but also that we need to be the voice for aiden and if we don't like an answer we can look for others, and we don't have to sit back and let the drs and nurses do veryyhing, that we can be a part of his care and we can question them.

Aiden is doing pretty good, he did have to seem to have something going on, he started a fever and as soon as they started the tylenol his seizures got better and last night he actually started crying... the best sound ever!!! I got to feed him with a bottle instead of through the feeding tube, wich is something you definitely take for granted.... and he continued all night and of corse pushing the nurses to their uncomfort. Het had been getting 2 oz at a feeding well he decides he's still hungry so they give him a tiny bit more, he sucks that down and wants more, then I try to get him to slee he wants more ... and that jut continued all night, then this morning he wakes and eats 6 oz all in one sitting!!! So I think that was his way of saying screw you I'm hungry!

It has been such a rollercoaster, after all th eyears of wanting and then begging mike for my great danes I came to the hard decision that with our enteire life changing and the amount of time, energy and patience this new nife is going to entail I had to make the decisioin to find a new better home for my babies .... this was one of the very hardest decisioins I've had to make and it breaks my heart but I. Just knew I couldn't give them the attention they deserve ... so last night my babies went to their new family...

Thank you so much to everyone who has stepped up to help and to those friends of mine who wouldn't take no for an answer... I really appreciate everything everyone has done and all the love and support we are going to need all of iti through this long journey

Our worst nightmare has come true

Well officially thursday they gave us the diagnoisis for our sweet little squishy. He has a rare seizure syndrome called ohtahara syndrome, which causes severe retardation and short life span.

We of corse are now greiving for our little man as he will not have the life we dreamed of for him... I have been through extream anger and sadness and still feel like we are living a freekin freddy krueger nightmare.

We are still currently up @ the hospital as the meds the had him on to stop his seizures had him so sedated he wasnt waking up to feed or dAo anything. Then today we discovered he has a fever so they are checking for infection and have him on antibiotics.. So we will without doubt he will be here through monday... And then will be sent home to continue life that will never be normal again.... Now we also have to figure out how to tell the girls...

As much as it kills ne to put this all in writing, I will continue to update,the blog as we go into the future

So our

Hospital stay #3

So once again we are admitted back to emanuel ... Aiden is still having seizures but now he is so druged up that I am having to force feed him and it takes me a good hour to get him to take 2oz .. Its getting really hard to be constantly on edge and worried nonstop, worried when he has seizures and worried hes not eating and worried about the future... I can feel myself starting to detach ... And constantly on the verge of tears... So hopefully from here we can find the balance between seizures and wake and being able to function... And of corse hopefully we can find an answer

A new day

Im trying to start with the possitive this morning but am having a hard time already. Aiden continues to have seizures although he is on 5 different meds at this point, hes been pretty much knocked out but yesterday was starting to stir every 4hours to eat which was the highlight of my whole day! It continued through most of the night, and he actually a couple times cried which was amazing to hear ... Its extreamly hard going through the many different emotions that this is taking me through... Im going of corse through extreame sadness, fear of the future and for my son, anger that this is happening and there are so many people out there who have kids they dont deserve,or who take drugs ect and have healthy babies, and ive definitly become a homebody, scared to death to takr him out in publyic and have something go wrong, or for even do normal things like baby pictures and have him have a seizure and have someone see it. These are all things im sure im gonna hafta get over and im coming to the realization its probly something we will hafta deal with possibly for his whole life... Im loosing hope that this is just some fluke and will go away...

Starting to loose hope

Man what a crazy emotional couple if days, so we got discharged from the hospital saturday, Aiden had not had any seizures since thursday night so we were excited! We once again had some meds we had to have to go home, well this is were it starts the stress, its saturday and the meds he needs have to be specially made into a liquid, so you have to have a specific pharmacy fill it, well of corse its saturday afternoon and this is going to pose a problem getting it filled, as most places if they can even fill it cant do it till monday... Well they wont let us go unless we can get it filled. I call 5different places with no luck... By sombe grace of god the nurse had faxed it to a pharmacy in vancouver who just so hapltened to of filled it friday and it was waiting for us!!! So we get to gob home! Well the excitment is short lived because that night and into sunday early morning Aiden starts having seizures again... Im terrified to call the neurologist because im sure theyre gonna admit him again, so finally I call and she has us go to the er where we can get another med that needs to be specially made and with it now being sunday no one is even open, so last night we go to the er they give him the med and add the b6 vitamin into the list now of 4meds he is taking, so no sooner do we get home and settled he starts having them again, so all last night and this morning he is having seizures, and now on top of it hes so drugged that I cannot breast fed him I have to basically force him to eat with a bottle, after I have worked so hard at the breastfedding and really wanted it to work, now im wondering if I should just pick my battles and give up because I really dont need one more stress...

So I again called the neurologist this morning, and at this point she said there is really nothing she would do in the hospital and that he may just continue having them and we just hope the meds calm them down, if he cintinues being knocked out and not wanting to eat them hell have to be admitted, and she said she has a syndrom in mind but wants to talk to the genetisist before talking to us about it... But it dosent sound good or promissing... So I constantky have running in my mind all the worst cade sinarios and in the meantime watching my son have siezures.... I am extreamly worried for what the future holds for aiden and our family

Update 5/13

So things are going ok today, Aiden is back to his normal little self, awake, getting up every 3hrs to eat and no seizures since 8 last night. So as long as he dosent have any seizures it looks like we get to go home tomorrow....

Hes been on the eeg machine all day and will be until tomorrow morning... They are testing the b6 again tonight so everyone pray! (we r hoping this is the key)

So off I go to try to get some sleep

Update 5/13

So he continued having seizures after we got here and they were able to view them w thr eeg and video feed which is good.. So the neurologist can physically see the seizures and what they look like. The neurologist came in today and basically said she had looked at a majority of the eeg and that they cannot completly rule out the vitamin b6 test, usually what will happen is once the vitamin is given the brain waves are supose to go normal and the seizures stop, w aiden his brain activity got more normal but not completly,and no seizures but theyre not sure if thats just due to the meds they gave. So theyre not saying thats the problem but they arnt rulling it out.... So we will be here another night and hopefully be able to go home seizure free tomorrow??

So our adventure starts again as the ambulance drivers show up with a big kid car seat to transfer Aiden to emanuel. The carseat is so big the straps come up past his ears... Thank god its an ambulance so if he does get hurt they can help him! Then the lady driver is going what seems really fast and hitting every major pot hole along the whole I 5 so as if my babies brain isnt already messed up now he has shaken baby syndrome!

So they are doing a 24hr eeg again to see if he is having any seizures we cant see and also they run a video so they can see what the seizures look like. They will also be trying the b6 vitamin test again... Im prayin to god thats the problem because again its an easy fix ... But we are in for a couple more day stay.... This time instead of being in the nicu though we are in the pediatric floor... You wouldnt think that would make a huge difference, but we actually have our own room with a bathroom, and this time instead of my once a day $4 meal ticket they actually feed me... So it makes me feel a little better... Sad that little things like that can make a difference...

So ad im trying to be possitive I am always on the verge of completly breaking down... They have poked him 4 to 5 times to get his iv and the seizures seem to be getting worse and it is the hardest thing to hafta watch. Then my heart breaks at everything im missing, Kaila had a game tonight with a pretty hard team and they won! Ky said she haf 2-3 outs @ home which are always amazing to watch... I just dont know howx much more of this stress I can take, or my family for that matter....

Im hoping we have some answers tomorrow

Update

Well our trip to the emergency room this morning has turned into one of my worst nightmares, they are going to transport him back to emanuel and admit him.... I am on the verge og completly loosing it.... I just dont know how I can or my family can possibly do this again.......

Having a hard time

So we are once again 1 day short of one week wothout seizures and Aiden has now had 4 since 1230 this morning. So of corse I am running on no sleep and am having a horrible time... It seems just as things start seeming like theyre going great and things are somewhat getting to normal it starts again.... I just want so badly for my little man to be a normal healthy baby..... So I sit and wait until 830 for the dr office to open and to find out what the plan will be for today... Which most likely will involve us at a dr office or the hospital again.....

Update

So after 3hrs in the er and them poking and proding my baby again, they upped his dose of his meds and sent us home. Let me tell,u though I have never had a fear of beung in a hospitkal until now, all I could think or worry about was whether they were gonba say they wanted to keep him, even sophie started panicking, which makes me sad...

I just hope this gets easier but they did say as he grows they will have to adjust his meds so unfortunatly I think this will be one of many trips to the hospital..

Update May 6

So we are vack up at the hospital emergency room with Aiden, his dr wasnt in today and so they sent us up here. I am apsolutly scared to death to even be back in the hospital and prayin to god they dont want to keep him again.... So me n soph just sit waiting to see a dr and hope that we can go home soon

One week home

So my sweet little man is officially 3 weeks old!! I cannot believe how fast this has has gone by!! He had an apt yesterday and was already 10lbs 4oz!!

He is doing good and does great with all the poking and being messed with from the girls, who just cant seem to let him be : 0 ) soph has gotten really good at shoving the binkie in his mouth even if he dosent want or need it lol and yesterday we took him to mias school and she got to show everyone herb little brother, she was so proud!

So things were going awesome, no seizures till 6:30 this am... He has had now 3 seizures from 6:30 to now @11:45 seriously brings tears to my eyes and breaks my heart and is the scarriest thing ever and al I can do is try to comfort him best I can... It is such a helpless feeling... And im almost possitive when I get the results of his med levels today, they will be down again.... So I will update after talking to the dr abd finding out what we do from here...

Back to the grind

For those of you who are following this, wehave been home today will be 5 days already!!! Time sure goes by fast! Things have been going good, the girls are fighting over who gets to hold Aiden, and poking him while he tries to sleep lol poor little man will be able to sleep through anything. Sophs bday was great it wasnt as difficult as I thought it would be, and the whole family had a great time, I had to pull mike out kickyin and screaming : 0)

So life continues : 0 ) tonight Kaila has a softball game which im sooo excited to go to, hopefully Aiden continues to breastfeed good durring the day, as sometimes its difficult to get him on, but trying to do bottles while your out is so much harder! So it should be interesting keeping the other two wrangled and do the baby stuff and watch the game!

In the next couple weeks we continue w apts for another eeg, and an apt with the neurologist, an apt w his pediatrician, we need to schedule his circumsision so its gonna be crazy with apts but I continue to cross my fingers this all goes away in time .....

Were finally home!

First night down! I didnt get much sleep between soph in our bed and not sleeping cause I neec to see that Aiden is breathing, thay was one of the plus's of being in the hospital, the alarm would sound if he stopped breathing so that was one new mommy worry I didnt have.

So off to our busy schedule and life!! Our little baby sophy is 4 today!! And I am so happy we made it home in time to celebrate!

Were going home!!!

So with a little bit of resistance I got the dr to let us go today instead of tomorgow!!!! We are in the car peeling out of the parking lot as we speak! Omg I am beyond excited and in shock!

April 28

So we had a good night, mo seizures since 6am yesterday. His levels this morning of the one drug was back up where it was before, which is good news, it means the doses hes on are controling his seizures and that he just had matabolized it faster causing the level to drop. If everything continues they are hopefull that we can go home friday, I however will not be getting excited until my baby is in his carseat and discharge paperwork in hand : 0 )

Then once we go home it continues and we will have quit a few follow up apts in a span of 4weeks time, one of which will probably be with a genetisist/metabolic dr so our lives will continue to be crazy but at least we'll be home and with the rest of the family

Update:

So meet with both the dr and the neurologist, so basically @this point, they have upped the dose of his meds and will check the level of the one, as it had dropped significantly,which could explain why after so many days of not having any seizures why now they are starting again. So tomorrow they will recheck the levels and make sure he is doing good on those levels... His eating is not as much of an issue today and if he continues should be good to go home, so @x this point the nerologist will check back tomorrow, well make sure his levels of meds are good and hix eating continues and see if they will let us go!!! But I am not even going to speculate or get excited until he is in his carseat with discharge paperwork... So one day at a time.

Im talking to them I am reminded that the tests we have done have all come back negative, which is good there are 4or so tests left that we r waiting on...