So much has happened! Update 12/10/12

Sorry for the delay in my posting ! So much has happened...

After aidens last EEG we had a follow up appointment with his neurologist. It didn't quite go as I had hoped, in going through the EEG findings the neuro decided that in fact there was a very little change in aidens brain activity right before one of his breath holding spells. It was t clear seizure activity but because there was a change it made him lean more towards it being a seizure, my heart breaks beacause call it motherly intuition but I knew all along that they were. Which means he hasn't been as seizure free as we had thought. I am glad that our neuro was so thorough and decided to try him on a fairly new seizure drug that has proven to work well, so again we try another drug. The only godsent with this is being as active and close with the other os parents I have heard of the drug and knew other kids were in it with good results, I also feel so much more informed and able to know what the dr is doing therefor I feel like I have a better say in his care. I guess it's a little bit of control in a otherwise completely uncontrolled situation. So we started the new drug and low and behold within days the breath holding seizures have stopped.... We are now dealing with horrible bouts if constipation but we take what we can get...

Therapy has really picked up and changed for us, it was approved to Add addition private therapy in addition to his early intervention therapy which is great ! We went from 6x a month to now about 2x a week which is great but also very time consuming and with 1/2 of those therapies at their center it makes for some busy running around! I am pleased though that we were able to get him more help.

Other than a couple ear infections and colds aiden seems to be fairing really well on the medical front which I could not pray hard enough for, one of the downsides to meeting all these great and wonderful families that are plagued with the same syndrome is that you get to know them like family and the cold and flue season is the apsolute hardest on our kids, a simple cold turned I to pneumonia and just wreaks havoc on their little bodies, just in the last year I have had to hear of so many hospital stays and scary situations and watching as families are tore apart by the loss of their beautiful little girls.... It rocks me emotionally like I never could imagine and all I can deal is horrible grief and fear... Fear that I am watching what will some day be aiden, his body too tired from the havoc that the seizures do to his body. I have to just put it to the back of my mind and with every little angel we loose it gets harder to do... It just become such an overwhelming thought in your mind of all the pain the families and kids have to go through ... Just so unfair...

On a happier note the opportunity has come for all of us families to get together and meet In person! Something I could never even imagine could happen, they are putting together the first ever Ohtahara syndrome get together the end of June and come hell or high water we are going to try to scrape every dang penny together to take our family to go meet all of these amazing people we have come so close to, and of course to love and hug on all the wonderful os kids!!! I am so excited !!!!

So for now we are gearing up for Xmas and bringing in a new year !!!

EEG results

So the EEG went well. Aiden did really well he was a happy boy and we had several nurses come in from the floor to say they had to see who was talking up a storm ;)

So he also was a good boy and had several of his breath holding spells , one of which our neurologist helper got to witness. They agreed, wow those are quite the fit but they are not seizures!!! It is so great to get a for sure answer and not constantly be in doubt.

The neurologist also said he's very happy with aidens EEG, although it is still abnormal and has seizure causing activity, that his brain is developing which is terrific news because that gives him the opportunity to develop which is of course all I can hope and pray for!!!

We are extremely lucky he is doing really well, is happy and has quite the little personality ;) our next step is to start cutting back on his seizure med and see If that gets us any more ability to develop, a scary thing to do but the less meds he's on sometimes the better, it's just finding the right levels that keep his seizures controlled but where he's not sedated and unable to develop.

Thank you again to everyone who still keeps tabs on us, we really appreciate it!!

Thoughts needed for tomorrow

So tomorrow me and Aiden are headed up to Doernbeckers for a 24hr eeg in hopes that we can see the breath holding spells and rule out them being seizures or not. This will be the first time we have been in the hospital since he came home... I am freeking out!!!lol I am having anxiety that something is going to happen and we are going to be stuck there again for weeks ... I know this is probably not going to happen but the possibility is always there. Just be thinking of us and hope that everything goes according to plan and that we see a seizure and also a breath holding spell so we dont have to do this for a long time again lol

Thanks in advace for everyones good thoughts

Update 9/28/12

So not much to report. Aiden is doing amazing ;) seizures are little to none I've really lost track and have stopped hanging on the date of the last one.

We are trying to replace his bottle meals w baby food and he loves it most of the time.

He is slowly doing little things like grabbing something, and is extremely close to rolling over. His favorite thing to do is bounce on his knees while you hold him and were working on him being on his hands and knees.

We have scheduled a video EEG on oct 9 and it will require an over night stay. I'm starting to have some anxiety about having to stay at the hospital... It's scary what could happen and all I can think is something is going to happen and their gonna want to keep him longer... But on another note I hope they finally capture one of aidens breath holding spells and we finally know for positive if they are just that or seizures.

We're also still after 6 months waiting on aidens special stroller/ wheel chair and taking him anywhere is starting to become really hard.i cannot wait to get it shoes more supported and comfy while we're out

Really that's all that's going on, we're busy with school (all 3 girls) and kaila is playing for 2 softball teams this fall season so were always at games or practices

Update 8/5

So we have had one crazy weekend!!! Aiden is allergic to one of the antibiotics they put him on for his ear infection, although even being allergic to it his ears are looking great and you can tell hes feeling much better ;p

We had a crazy 1st bday weekend!! Sean our cousin turned 1 and our friend Piper. It was exciting to see their parents get to experience the first birthday traditions but a little sad on my part also. To get to see them walking around and opening their presents and doing the first bday cake thing makes me sad and I try to imagine what it would be like to see Aiden in his curly hair tottering around. I just have to keep reminding myself that those are my dreams for him and that he dosent know hes missing out on anything.It dosent make it any easier... I just have concentrate on how happy a baby he is...

Rough week

So it has been a rough, tiring week. Mr squishy has been sick, Saturday for the first time we had to use aidens rescue med because his seizure lasted over 5 minutes long. It feels like just when we finally settle in and things are just starting to feel normal something happens.... I swear I loose a couple years of my life every time something like this happens.

We did take him into the dr because I was just sure that this was going to be the time that we got told he has pneumonia. Which is always a fear when aiden even gets the sniffles, and it's always a fear that we will have to have him admitted. To my surprise his lungs were fine but poor little man has a double ear infection. So mr man has been miserable this week with fevers all day and that in turn causing him to have about a seizure a day... Hes now on his second antibiotic and hopefully on the mend.

As much as it sucks for him to be sick and miserable and having more frequent seizures I am very thankful that really he has been able to stay reasonably healthy, this is his first ear infection and the colds he has gotten he has managed to come out of without getting pneumonia which is my biggest fear and what a lot of the kids w OS get and struggle with. I just pray this continues

On a different note we finally sent our bloodwork in to Boston children's hospital for use in their epilepsy study!!! It is so exciting that they are doing the research and it's in eyesight.... I would live for it to provide some kind of answers not only for aiden and our family but maby for other OS kids and for the future....

I also got to take the kids swimming this past week and Aiden apsolutly loved it!!! He was in there for over an hr kicking his legs and floating around it was just amazing!!! I do of course wonder if that is part of the reason for the ear infections... But so amazing to watch!!!

Rough week

So it has been a rough, tiring week. Mr squishy has been sick, Saturday for the first time we had to use aidens rescue med because his seizure lasted over 5 minutes long. It feels like just when we finally settle in and things are just starting to feel normal something happens.... I swear I loose a couple years of my life every time something like this happens.

We did take him into the dr because I was just sure that this was going to be the time that we got told he has pneumonia. Which is always a fear when aiden even gets the sniffles, and it's always a fear that we will have to have him admitted. To my surprise his lungs were fine but poor little man has a double ear infection. So mr man has been miserable this week with fevers all day and that in turn causing him to have about a seizure a day... Hes now on his second antibiotic and hopefully on the mend.

As much as it sucks for him to be sick and miserable and having more frequent seizures I am very thankful that really he has been able to stay reasonably healthy, this is his first ear infection and the colds he has gotten he has managed to come out of without getting pneumonia which is my biggest fear and what a lot of the kids w OS get and struggle with. I just pray this continues

On a different note we finally sent our bloodwork in to Boston children's hospital for use in their epilepsy study!!! It is so exciting that they are doing the research and it's in eyesight.... I would live for it to provide some kind of answers not only for aiden and our family but maby for other OS kids and for the future....

I also got to take the kids swimming this past week and Aiden apsolutly loved it!!! He was in there for over an hr kicking his legs and floating around it was just amazing!!! I do of course wonder if that is part of the reason for the ear infections... But so amazing to watch!!!

Squishy Update 7/24/12

So Im slacking on keeping this updated so this may be a long post!

Things have been good and busy... Aiden is making great progress with the helmet, he is almost at the point where we can be done with the helmet, we are looking at another 3 centimeters in one area and that is with the improvement with him not wearing his helmet very frequent due to the weather. so that is excititing!!

His seizures are for the most part controlled, he is having them, and on our worst days he may have 2 of them a day. They dont last very long and sometimes he quickly recovers from them. Of course I would love to say he is seizure free but I think from where we were hes doing pretty good.

He continues to also make small improvement in his therapy, things have gone so much better now that the formula change has happened. We are able to go through a whold therapy without him screaming through the whole therapy. He is working still on rolling over and playing while on his side but we have also started working on him standing!! He loves it!!!  It is so great to see him make improvements and see him enjoy doing certain things.

He is now eating solid foods on a regular basis and you can defintley tell when he likes certain foods over other ones...Our goal is to get him to where he is eating solids of what we are eating.. so we continue to work on that.

We are still waiting oh his special stroller, its killing me!! its getting harder for us to take him places and to have a place for him to be... everyday life has defintley changed. But he goes everywhere and does everthing with us... and for the most part he is a happy baby and things have slowed down and we are just able to settle in.

I continue to be very very active in the Ohtahara support group and i truly believe that without those wonderful parents this road would be so much harder!

I am so excited!!! We are getting ready for the NW Epilepsy walk tomorrow morning and it is just so great to have so many people want to come walk with us!!! We tie dyed tshirts and made a poster and it is amazing to be able to try to get aidens story out there!!! I hope lots of people ask questions tomorrow and maby we can make some new friends tomorrow!!! Way to Go TEAM SQUISHY!!!!

I will of course post pictures as soon as possible!!!

Another great accomplishment has happened, our squishy is learning to stand!!! he got some leg braces and he has managed to be able to hold himself up enough that he can stand almost unassisted up against the couch.... it tears me up every time, to see him standing like that, something we never thought we would be able to witness. Thats our handsome little man doing things every day i never thought we'd get to witness Keep it up boobie Mommy loves you!!!

Vent time!

So out has been over a week and we are still working on getting Aidens formula. And I have seen what not being on it is now doing to my sweet boy and it angers me! Spots all over his tummy that are red and sore and weeping, sore red butt, puking and just fussiness... Why is it such a problem to get this figured out? The insurance has denied it and even being double covered, the state won't pay for it unless he's on a feeding tube... Really what is the difference? You would think it would help prevent other health issues??? Uhhh it just angers me! Lol ok rant over for now...

General update 5/18

So this is going to be a long update lol it seems like a lot has happened and I keep slacking on updating this.

So our little squishy is officially a year old!!! I just cannot believe it! We had a great birthday at a local park. It was layed back, the kids were able to just run around playing with bubbles and having fun with no worries. I didn't have to worry about cleaning or feeling like it was too crowded. We ended up doing a pinata and the kids loved it ;p Aiden got to taste some of his cake ;p

So thank you to everyone who made the trip out to help us celebrate !!

Things have calmed down as far Aidens seizures. He is now officially on just one seizure med and the seizures have stopped. Wahoo!!! It was a little difficult there in the beginning as he was having up to 2 a day and a couple of them reached almost the point where we had to use the rescue med. Very scary but things have gotten better and we are back to being seizure free!

We also had a feeding appointment and they decided to thicken up his formula more, and to have us try a hypoallergenic formula. it was an AMAZING change! within less than a day he was a completely different boy he spent the whole day without crying, he was happy and playing, he didn't throw up at all, and his spots on his neck and stomach that had been there for 6+ months were going away. Well if it was only that easy lol so I started the steps to change everything with wic because this special formula cannot be bought over the counter and is $50 + a can. Well of course it cant just be that easy... none of the pharmacies carry it or can order it and I'm getting the run around ... and until we get it figured out he has to go back to his old formula and have already seen a regression in all the improvements we had seen. But I'm excited once we do get it all figured out and we get to see that happy boy again!!


I also had anther thing kind of cool happen.. I read a book regarding autism and vaccines and kind of had a realization that there may be a connection within our family regarding autism and Aidens os. So because he belongs to a study out of Boston Children's hospital regarding os I was able to call and talk about the connection with their geneticist. And she did say that autism and epilepsy do overlap and that i was not crazy to  think there may be some connection within our family that effects the boys .. So I'm hoping with that that they may find the cause of Aidens os during their study and it can provide us with some answers.

I'm excited for the future and what is coming ....  :p

1 year old!!!!

Oh man where to even begin!!! Our little Angel squishy is offically a year old !!! I cannot believe it! so much has happened in this last year but somehow it also just seems like yesterday... It definitley brought back some sad memories as we started coming across things we had done last year, and to remember back to what a horrible place we were at last year. I think the hardest part looking back was remembering my kids... how hard this was on them also. Having to come to the hospital once every couple days to see their mom and new brother we had been so excited to have. Having to come to the hospital to decorate easter eggs and spend easter morning not at home... Its hard to look back because i wasnt really able to be there for them like I wanted to  because both me and mike were both trying so very hard to keep it together. It was a very very trying time for all of us.. But what a great thing to be able to make the most of this year and get to have aiden there and celebrating with us!! Man he loved that easter basket and tried a taste of his first peep ;p it was great ;p

So of course a lot has happened since the last time i updated, we are in full birthday mode, i just got Aidens and Sophies invitations printed and ready to roll out. Im nervous and sad my babies are 1 and going to be 5 years old!!! But were are gonna celebrate redneck style lol with john deere and some time at the local park ;p

So with Aiden turning 1 there have been tons of appointments... we had another neuro development appointment and of course the report that follows that appointment that always just hits right to the heart when it is filled with nothing but neggatives about what Aidens not doing and how much he hasnt made any improvements since the last time they saw him... blahhhh We also had today his follow up Neurologist appointment ... im still processing that... I know they have to be pro active and not give false hope blah blah blah but it gets hard to constantly hear bad news and how things will get worse ect... I choose to live in my little special world where my sweet aiden can do what he wants when he wants as long as he keeps giving mom those smiles and showing his sweet sweet personality;p

They also mentioned in the future having to possible look at doing the keto diet, which will require a g tube to be used due to his aspiration... and then also they brought up a venus nerve stimulater... its a pace maker that would be surgically implanted and attatched to his venus nerve, it would then transfer electrical impulsed to Aidens brain and somehow this has been used to stop seizures... again still processing all the information and not quite sure how i feel about all of it yet... agian i choose to live in my special world where his one med we have him down to will continue to work great and he will have complete seizure control.

So much just going through my head tonight... Im trying like crazy to keep possitive and look forward to my squishys first bday party!!


 

Swallow Study

So Tuesday we had Aidens swallow study done. It was not the best news, we found that he is aspirating on liquids. It was the most emotional and scary appointment I think we've had. His eating has been the one "normal" thing with him and after getting him eating again after being on a feeding tube we have tried very hard to keep that continuing. I was very adamant that i didn't want him to have to get the gtube and when i heard them say at the appointment that he was in fact aspirating, fear set in. I just knew they were going to tell me that he was not going to be able to eat by mouth any longer and that we would have to do the g tube. This is not exactly what happened thank god! We do have to add a thickening agent to his bottles, which has become quite the ordeal to get it just the right consistency and it makes him mad because eating takes longer and is not as easy as before. It has literally taken me this whole week to really get somewhat of a system down but i finally feel we may be getting it. Its a starch that we put in, and you have to get it just right or it ends up thick as pudding. We have to let it sit for 3 minutes (which aiden is not fond of because when he wants to eat he wants to eat now!) it definitely makes making bottles away from home harder to do ... but I will take it over the g tube and taking away his food any day!

We continue to do the wean of his one med and for the most part its going pretty well. We had a day where he had 3 seizures in a day which is the most he's had for quite some time. And by the end of the month we should be done with weaning and hopefully seizure freedom continues...and we get to celebrate his 1st birthday!!!!

Squishy Update 3/9/12

So I know as Im writting this how very depressing it may sound, and i appologize, Aiden is truly such a blessing and has really made us dig deep and not take advantage of anything. but this is where i can get all these feelings out in the open, somewhere where i dont have to be the constant optomist. the strong person.

So since the last update, we have continued to wean Aiden from one of his seizure meds. It is going pretty well, we are not completly seizure free but he is doing okay for the most part, most seizures happening on the day we go down on the dose. It just really sucks to watch something so horrible happen to your child and not be able to help him in any way. I know most people say that people with seizures dont know they are having them, but I dont believe this he cries his upset this sucks cry after he is done having a seizure, and latley they are knocking him out for long periods of time. Sucky thats the best way to discribe...

We are now officially on count down for his 1st bday!!!  This brings such excitement and fear and realization all at the same time. The older he gets the more evident all the things he wont be doing or things I feel he will be missing out on and it breaks my heart. This pain is so unlike any other pain there is ... most other tradgetiy happens then it is over and you are able to move on. This we relive every moment of every day, in everything we do from the simple every day things like going to the store and not being able to put your child in the cart. To thinking about his first bday and how he wont be able to do the "traditional' things like digging into his first birthday cake.... and it will forever be a pain we live with getting worse by the day or year.. always having in the back of your head that at any time you could loose this fight and loose something that means so much to you and that you have changed your whole life for. And then in the same moment you have such joy from the very simple of things, a movement a smile or just eye contact.

With his first birthday coming also comes some new things. we had to take him in to get fitted for what will essentially be his first wheel chair and what they call a stander (a board we will strap him to to allow him to be in an upright standing possition with support) .. and its crazy to get past the fear of this realization and go to excitement of getting these items to help him, and hopefully how it will bring joy to him to be able to somewhat interact on our level.

Watching the superbowl at the sowards, such a boy!!

LOVE His sad face!!

Squishys first teeth!!!

Thanks again for all who still read these, and for all the support. I would really like to be able to personally thank everyone who has had kind, encouraging words that have really carried us through this year...

Wow what a crazy couple weeks!

So lots and lots has happened.... to start one of the most loving papa's, father and husband (mikes dad) passed away Friday the 3rd he was battling cancer and had a massive heart attack. Its so hard knowing that he wont be here for all the things that life has to come. Pappa you will be missed greatly.

So we have started a wean of one of Aidens seizure drugs and as much as it scared me to death to do it is already making an improvement. I asked all the os moms about it and they all said that when their kids came off of it it was like they came out of a fog, and that they were just sleepy on it, i thought well Aidens not sleepy and didnt appear to be in a fog, but boy was i wrong! We have only gone down 1 1/2 ml and I already notice that he seems to be more aware and is trying to reach for things!! I am so excited to see what happens when we are all the way off of it!!!

We had a feeding apt at ohsu and will be scheduled to go in for a swallow study to make sure before we pursue more solid foods that Aiden is not aspirating on any food. I am scared to death that they are going to say it is not safe for him to eat by mouth and we will have to go to a g tube. We have worked so long and hard to get him to eat without a tube... so I need prayers that he will not require that...

so they also evaluated him and he is still at about a 4-5 month old developmentally, is almost almost so close to rolling over!! I pray that he continues to make progress and develop

Thank you to everyone who still keeps updated on our special little boy!

Update 9 months old!!! 1/20/12

I haven't updated this in a while and we have been busy!!! So Aiden had his fist Christmas!!! Such a huge milestone, one i didn't know we would get to have. He got tons of cool toys with lights and sounds and has been having a blast with them. He has even started to try to activate and hit a couple of toys.

We continue to have therapy every week and will be adding a speech therapy soon, he is making little gains but still is not rolling over or grasping for things. We also have not much improvement with eating solids... he seems to have an aversion to anything but his bottle... I believe due to the medicine we were giving to him by mouth (without mixing).

Things seem to be getting harder as time goes on and he isn't progressing developmentally as I had hoped he would once the seizures stopped. We had a pretty big hit to our reality, we had him seen by the neuro development team at ohsu after xmas and got a letter re-caping the appointment and where they viewed him developmentally. They put his motor skills at around 2 1/2 months old and his social skills at 4 1/2 months old... although i believe this to be a little off just because he wasn't in the greatest mood and didn't showcase what he is really doing on a daily basis. They also listed all the things wrong with him and for some reason this hit me the hardest, Cerebral Palsy, mental retardation to just name a few... This has been the hardest for me to process. I guess I hoped that he would be maybe physically behind but that mentally he would catch up. This I wont lie put me into quite a dark place and I have struggled to snap out of it.

 On a better note, we have continued to maintain a great seizure control and have only had a handful of them since November, and it was due to his med levels being low. We just saw the neuro today and will start to wean him off of one of his seizure meds. This scares me to death but they say that the drug can be contributing to slowness in his development because of its sedating effects. So I pray that it goes well and that we start to see some progress in his development.

In the meantime Aiden is sporting a new helmet to help correct his flat spot on his head and his torticolis (tightening in his neck muscle) I was so excited to get his helmet hoping that it would help with his range of motion and mobility. He spent the first 4 days doing nothing but wining and crying and would just lay there and not pick up his head at all... a very long 4 days! he is starting to adjust to the helmet and we are starting to see some improvement with movement!! He also will be sporting glasses in the next couple weeks, hes gonna look even more like daddy (if thats possible!) so im hoping with all the new changes coming we will see him start to develop even more.

So with all these new things I am also starting to think about Aiden's 1st birthday!!!! OMG i cannot believe he is going to be 1 year old already!!! Man my little squishy is getting so big! So I look forward to making this a HUGE ordeal!!!