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...