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 .....