Have pictures to post. Both of the boys got summer hair cuts. Finnian's nurse nearly had a heart attack all she wanted to know why did we let the barbar cut his hair so short now he has no curls. Its cute but it does shoe how small his head really is. When his hair was longer and he had the rats nest of curls on the back you didn't notice his head size but now when you compare him to a normal 4 year old his head is tiny. I am going to dress they up in their Irish football gear and take pics.
Will post all the pics tomorrow.
Since he started on the new dose of antibotics and the infection is finally gone in his ears he is really a new boy. This new med was supposed to knock him out but I really think it has the oppsite effect on him he now stays awake all day. I am not complaining I think its great he is active more and trying so hard to say words. Friday was a bit crappy for him but then again so was the weather there was a thunder storm with rain so there was a little seizure action going on but not like what he used to be. I don't want to say anyhting yet about the new medication just incase the bubble burst.

Seizures

Its horrible to hear that any child is having seizures but the worst blow is when you are told your child has Infantile Spasms. Seizures of any kind are bad but Infantile Spasms is not what you want to hear. IF left untreated IS will cause brain damage. When you have a brain damaged child and you are told Yes your child has IS the only thing is what can we give the child to stop these seizures. Well every child is different and what works on 5 kids might not work on your child. Our Finnian was diagnosed with seizures on the 3 of September2005, we were told he has seizures and they put him on phenobarbatol. I used to gag everytime I went to give him the med becasue of the smell of alchol off of it. But it seemed to be working but in October we had to bring him to the ER again with seizures, they increased his dose of med and it seemed to help but in November he finally got the Infantile Spasm diagnoses it was only then did his brain waves give the diagnoses but his neuro had suspected IS in October. So finally a diagnoses and the next thing was which treatment to start him on. They decided to try him on Vigabatrine but the only catch was we had to get it form Canada as it was not FDA approved. The one side affect is damage to the vision, but Finnian already had damage due to the stroke so we really didn't know how much vision he would ever really have. The Vigabartine worked and within 3 weeks he was smilling and interacting with us again. It wasn't until he smiled that I realized he hadn't done that in a good while. By Febuary he was having seizures again but they were different so not only did my child have IS but he was having other seizure types too. Today we have the IS basically controlled but its the other seizures that we are fighting with. So many meds and they all work for a while and then well thats for another time to talk about.
I go over in my mind that I should have pushed for him to be checked out for seizures earlier. I did have a child with brain damage form a stroke. But I thought that his "things" he did was due to the stroke looking back over what I know now he was having little seizures since he was about 2 mths old but I just put it down to a sensitive tummy and his brain damage as to why his was so jumpy, jerky. Do I feel like kicking myself in the rear end over the signs I missed hell yes and I do blame myself. And I wonder if ti was something I did that caused the stroke. I cannot beat myself up over it Finnian is Finnian and this is the Finnian we love the one with all his problems and yes maybe I do have a bigger attachment to him becasue he needs me more. But I cannot put all my time in him his brother and sister need me too and I still have not found the right balance to split my time between everyone. I guess I am still learning .

No more Mirlax

Well for the next few day we do not have to give our Finnian any thing to help him poop. So the mirlax has gone back in the closet. Well since he started on the Banzel he has been going pretty good on his own and we had cut down on the mirlax but since he got the augmentin for the ears and we gave him the first dose the has been pooping up a storm. We now just have to make sure we give him more fluids so all the going won't up skittle the ketones. I will be damed if thats goes hay wire. The seizures have been good knock on wood. He has only gotten one dose of the antibotic and there is a huge improvment still a bit whiney cyring but nothing like he was yeaterday so fingers crossed he will be much better tomorrow. It was funny Joe came home and I said you can have burgers for dinner sorry but I have to lie down I was recked tired. I finally got Finnian to sleep at about 1:30am this morning and of course I went to sleep but for some strange reason I was wide awake at just after 4 am this morning and couldn't go back to sleep. So with little sleep I guess I was tired and I am not as young as I used to be . To think in my hay day I could work a morning shift and then my own shift and then go out bar hopping and get up for work the next morningWell i should say get home and have a shower change clothes and go to work. I often had people say " Oh its great to be young" I used to laugh at them because I always thought it was becasue I didn't drink. But I still don't drink but "Oh to be young and work on little sleep again"

Well !!!!!!!!!!!!!

Yup he has ear infections. Thoes nasty buggers are back he is also congested in his nose so his Peds said to put him back on the singulair to get rid of the stuffed up snot that is up there. Hopefully it will also help the ears. I cna only hope. It really kills me that I have to give him another round of antibiotics well it bothers me to give anything on top of the rest of the stuff he is on. It alsways seems I am adding to the huge amount of meds he is on.
So keep your fingers crossed that this will get rid of the ear infections and hopefully we can only give him what he needs only for his seizures. It looks like that the Banzel is doing ok we have not had any major seizures he is a bit jumpy, twitchy because of the ear infection but thankfully no full blown seizures.
Today is the first day with all three kids at home and the weather is crappy its so dark now it looks like it could pour any minute.

Joe's dad is here from South Carolina. He came up for his High School Reunion. Yesterday was a bit of a wash out with rain, but we still went to the Bronx day parade it was just down around the corner on Mosholu PKWY. It was nice and Finnian loved it . We got the FDNY to set of the siren you should have seen his face it just lit up in pure happiness. He loves the sirens be it ambulance, cop car or fire truck he loves them. We walked around the stalls that were set up lots of food. Eoghan was in heaven he loves food. He got a pork kabob he loves them. Maura got a pony which she named Ne-Ne. Thanks Nanny. The crew is all gone out its just me and my sick side kick at home. I know I have to take him to the Doc's office tomorrow the does need an antibotic to help clear out the ears. It never fails once we get a handle on one thing that has been causeing a problem something else pops up. Well its the ears again I guess we will getting tubes done becasue its not fun to have double ear infections again we were only 2.5 weeks free when they showed up again..

Happy Fathers Day

To all the Dad's out there

Happy Fathers Day

Under the weather

Well our small lad is under the weather. He has a bit of a temp and a snotty nose and he is as cranky as be dammed. We knwe he was a bit funny today but we just put it down to the crazy weather we had today. talk about a cow pissing on a flat rock at times horrible down pours. But the new med must be working its magic no seizures have we seen but now with him being sick I think that will be the true test. He just got the first morning dose this morning he has been on a dose every night for a week. Only another few weeks until we hit the propper dose and then we will see and hopefully we can take him off one of the other meds he is on. Oh how I hate to be pumping him full of crappy meds. There are times you will always question why am I doing this but then you will see them doing something and you know then its the right thing to do. Its funny not only do the pharmacist call me by name but the guy at the door knows me by name . I joke all the time that they should give me stock in the store with all the meds I get there.
Must go and relax as I know I will be up all night tonight with our Finnian

Guess what? Our Finnian was awake again early this morning I did not get up as it was daddys turn. Do you know he went back to sleep. Now why can't he do that for me? I guess he know Mammy is a sucker and will play with him.We will just have to see how the rest of the day goes.

The new med Banzel the known side effects are upset tummy and can make them sleepy. Well the upset tummy part we get its great he can poop on his own now we don't have to giving him crap to make him go. But the sleepy part we don't see this he is awake more. The last few nights he has been waking up around 3 am. Yes 3 am and all he wants to do is play and talk.Today he was awake before 3 am and didn't take a nap until almost 3 pm. Thankfully he was awake again by 4:30pm. We will try to keep him up until 10 pm tonight in hopes that he will sleep until at least 5 am I hope. At 5 am this morning I was so tempted to put him in the Jogger and take him out walking in hopes that he would go back to sleep but I didn't, but I should have. I am alittle sleep deprived and have a whopper of a headache I know its from lack of sleep. Well Joe is off tomorrow so he can get up with him. Watch the little bugger will sleep because daddy will be on duty. It never fails.

Finnian

Yesterday was a funny day for Finnian well the weather didn't help. We had a few down pours and of course we had seizures. The first one was at my Mammy's house. We had put him on the floor so he could roll around and then all of a sudden there he went mouth drooped and very spastic in his movements I was waiing for the usual shout but it didn't happen. Instead he had a few myoclonic jerks instead and the whole thing was over in less that 1 minute. Said to mam I will just have to watch him and he will either have another one in 3 hours or if we are lucky it would be 6 hours. Well we were lucky he had another 6 hours later like the frist one mouth drooped spastic movements and it stopped. I am not getting my hopes up yet over the new med but that was an improvment no scary shouts and we didn't have to give the diastat. To day he is full of beans and up to his silly tricks like getting his feeding tube and opening the medicine port and sucking the formula out and he also disconected himself and was sucking the formlua out of his tummy. I don't think that tasted too good. Of course I screamed" Finny what are you doing" there he was with his tube in his mouth and formula all over his face and he was so happy. Well Mammy wasn't too happy becasue it means more laundry the couch need to be stripped down to its bare bones again cause if I don't the whole house will stink nothin worse that sour formula.

Well our Finnian had a good day to day . He was a little sleepy I don't think its from the new med but from the change in the weather again. The rain has stopped and the weekend is supposed to be great. Now we just have to watch out that it doesn't get too hot out for our Finnian. Once the tempature goes up to the 90's we have to watch him as he over heats . That part of his tempature control is a little funky. He doesn't sweat like normal people he just gets red and sticky and is basicly a wet noodle when he over heats. We have discovered if we put the "Be Kool" on the back of his neck it helps. I know what are "Be Kool's"? It is a gel on a piece of gauze that you can put on a child's or adults forehead for a fever. They are great as the stick to the skin but are easy to remove not like a band aid. They work for him. Now he loves the winter the colder that better. Yeah I know he was born in the winter but not everyone loves the cold like this child does. We all have a habit of bundling up in the cold but our Finnian you have to watch out becasue if you bundle him up too much he will over heat in the cold.

New med

Well the pharmacy got the Banzel in so we gave him the first dose tonight. Don't expect to see any side effects yet well I hope not as it usually takes a few days for most meds to get in to the blood stream. It would be nice if this is the med for him but when you try so many you don;t get your hopes up until you get one day seizure free and then another,and another and so on. We just have to wait and see what happens.
Maura's last day of school is tomorrow and Eoghan has another week of half days and soon I will have all three at home. We go on Monday to get Finny's IEP done and get approved for summer school. He does need the therapies the other two don't mind as now I will be able to do things with them while he is in school. They are already planning what they want to do. They want to go to the Zoo, to the gardens, may be the beach but we won't be able to do these things until the weather gets nice. Yeah its raining here you all know how Finnian likes the rain. Rain usually bring out the monsters of seizures in him. He had a great day in school and his only nap was on the school bus going to school. He was up the whole day he had a nap when he came home. You know you wouldn't know he was up since 3 am this morning I am tired but then again there is 34 years difference between us/
Got to go my leaba is calling I am tired

This is one of Finnian's friends

This sweet little girl is Katie. Katie came from Northern Ireland to Chicago to get the right treatment for her seizures. If you look under Finnian's friends to the right you can read all about Katie. They are still fundraising to keep Katie in the USA so she can receive treatment and care for her seizures.

So check out Katie's site Keep baby Katie awake

Back to normal or what ever that is

Well our Finnian was back to himself bright and early this morning. At about 3 am to be exact. I hear "Ger" and I get a kick. You see when Finnian is not himself me and my boy take to the couch in the living room this way everyone else gets to sleep. He was so full of energy and wanted to play and he kept telling he was hungry. We have noticed he is always hungry after he has a snooz after having a seizure. Well I suppose he burns of so much energy during the seizures. He did go to school today. I have so much laundry to do as I have been putting it off as my back was bothering me. Yeah , yeah excuses excuses.

Here we go again

Well the weather has been crappy and we thought that our Finnian was doing pretty good no seizures. Well the bubble bust and this evening he had one of his shouts watched the time and it was over in less than a minute. No intervention his blood pressure was good, his breathing good and no drop in O2. So all we could do is wait and see when the next one would happen. Its usually goes 6 hours before the next one, no intervention the next on e after in 3hours thats usually when we give the diastat but tonight he did a Finnian. The second one came 2hours 56 minutes after the first one. We didn't waste any time we just gave the diastat. I was just falling asleep when Joe shouted he is doing it again all I said back give him the diastat. Now we just have to wait and see if the 5mg of diastat will stop these nasty buggers. We have found out that we have to give him the 7.5mg of diastat if he has an Infantile spasm cluster because the 5mg only slows the seizure down and there is nothing worse than watching your child spasm over and over until it stops. The hardest part is he will either be so tights or he will be like a wet noodle. If he pulls a Finnian he will be tight tomorrow. Oh pharmacy hurry up and get the new med in I know the manufactor of the diastat loves us but I hate shoving the crap in to him.
So now I wait to see if we have another seizure

Graduation Day

Here she is our Kindergarten Graduate.

Shown with her flowers from Nanny. Roses no less.

Here she is showing her diploma.

Good news

Well had to take Finnian to the GI this morning. Everything is going good with him but the best was we got Eoghans results form his GI scpoe with biopsy. Well he is almost fully clear of Eosinopillic cells in his tummy and esophagus. This is really great news so we just have to continue on with his meds and go back in 6 mths and he might do another scope. But if he has any flare up we have to call him right away and if we can figure out what might have caused it just elimaniate the cause and see what happens.
So just by removing the eggs, soy and peas and watching how much of the 4 others he ate has really done wonders for him. We are going to keep it up so his tummy doesn't get that bad again.

I'm soooooooo happy we got good news again.

We got the go ahead

Well we got the call yesterday that we are being given the OK to start the new med for the seizures. He will be starting on Banzel also known as Rufinamide. This has been approved for children ages 4 years and older. It is more of a broad range drug in seizure treatment.
The only con right now is first we have to get him on the drug first before we can wean him off one of the others. So that means he will be on 4 meds and the keto diet for awhile. So fingers crossed that we don't have too many side effects. The most common are; upset tummy, sleepy and make him a little off balance but once the body adjusts most of these symptoms go away.
So now we just have to wait for the script and the wean on schedule it's coming in the mail.
Am I looking forward to him being on 4 meds and the diet? To be honest no but hopefully it will work. The poor lad had a rough end of April and May with seizures but the one thing he didn't regress. I think it has been the first time his speech didn't go. He has started to make new sounds the best is he does have a new word "this". Its funny to watch him we tell him " Finnian where is birdie?" He puts his hand out searching on his tray and when he gets something he will give a look and say"tis?" If he is wrong you just tell him no and he will let it go and search again until you tell him "Yeah Finnian you found birdie" he gets so proud of himself and gives a cheeky grin and a whole load of babbling comes out.

Its someone's Birthday today

Happy Birthday Rebekah.

Today is Rebekah's 17th birthday.

Happy Birthday.

well its not.......

Well Eoghan doesn't have scolosis. The ortho doc checked him out and it just has to do with his tone and not keeping his shoulders back. The doc said "Eoghan stand comfortable like you would do " His eyes opened at what he saw. Then he said "stand up straight" Eoghan did and what a difference no hump on his back. We don't have to do PT just have to some strenghting exercises. Which is fine by me.

This morning I sneezed and pulled something in my back but its not too bad now I guess I worked it out. I cancelled Eoghans eye appointment for Friday I am tired of going to doctors I need a break. We rescheduled it for July. So thats it for today

Me

I think I really need to go to an ortho doc for myself. I have the same thing happening again to my left leg. Oh wow, Finnian was about 2 years old the last time I had this problem. It go to a point where I was not able to pick him up out of his crib with out Eoghan hopping in and helping me lift Finnian. That time I eneded up getting a shot in my hiney and a crap load of pills to take. Everyone who knows me is I have to be out of my mind in pain even before I will take tylenol and as long as it will take the edge off the pain I will keep on going. But now Finnian is bigger, heavier so I think I will see about getting it checked out sooneer rather than later this time. So maybe when I go with Eoghan to the ortho doc tomorrow I will ask if he can reccomend someone who will check me out. Yeah I know maybe if I lost the weight I might not have the problem but until I get it checked out I know its just another excuse.

many faces of Finnian

Look at this cool looking boy with his shades on.

Yes this is Finnian in his big boy bed he likes when Maurs hops in with him and makes the bed go up and down.+

Sing Finnian, sing .Susan Boyle you have meet your match.

The latest on our Finnian

Well our first appointment today was with his Neuro doc, The result is since he is on three meds and the keto diet and we are still having seizure that we have to use Diastat may be its time for a change in some meds. To be honest I am on board for the change. It pains me to no end to have to give him Diastat. Yeah it works and it stops the seizure but I hate really hate pumping him full of crap. So off to the peds afterwards to check the ears and we also got him to do a base EKG on him we need it so we can go forward with the change of meds. The results still a little fluid in his left ear but nothing like the last tympaney test. His EKG was good so I must fax it in to the neuro's office for them to check it out. Once they go over it they will send me out the prescription for the new med and the wean on wean off schedule. So yes he will be on 4 meds and the diet for a while but we are old hands at this now so like I said yesterday anything with Finny doesn't phase me any more. Have to call his Keto diet lady and see what she thinks about his weight he is growing so that is not a problem. Must give her a call. Tomorrow I will update you on Eoghan's appointment with the Ortho doc and we will see if the peds is right about the begining of scolosis.

Its one thing having a child with high medical needs but then add a second one in the mix with different problems. I really started this blog for Finnian so family could keep up to date on his condition. I have found that now I have to get Eoghans disorder noticed. Its not that easy as there aren't too many sites out there some only skimp on the basics and they usually point you to the sites of food allergies. Yes his problem is mainly with food more an allergy. Its crazy I have a child who loves I mean LOVES food. Now I find that its hard to even get salad dressing can you beleive it salad dressing that doesn't have any of his no no foods in it. There is only so much olive oil and vinegar that you can put on his salad we have also found htat mixing lemon juice and olive oil together is another alternative. My little sister is great and has to be given credit as she makes his cookies and cakes she has gotten all kinds of baking books so he can have a sweet. In some ways we are lucky he can have some things in small amounts there are some kids who have to live on special formula and for treats like cakes for birthdays they have to settel for DUM Dum lollipops or ice chips and cakes made out of boxes. Its a new learning experience for me I thought I finally had gotten to the point where I was comfortable with changing meds increasing /decreasing meds. Doing anything new with Finnian is done now with out me almost having a panick attack like you mean you want me to change his G-tube button on my own!! or I have to do what to him when he doesnt' pee. Oh yeah cath him no problem its sad to say but all of thoes things are easy. It pains me to no end when i pick up and start to read whats in something . You get to a point you just scan down and look for the word soy it just jumps out and all you think what dosen't have some form of soy in it. You basically cannot buy Ice cream becasue 99% of them have eggs in it. You cannot buy packaged frozen veggies because they all contain peas. You have to watch the amount of dairy because if you give just a teaspoon to much he will get pains in his belly. eating out is getting hard becasue vegatable oils contain soy some can even have peanut in them. So you have to very careful not to get anything fried becasue you don't know . Its not worth taking the chance becasue its not nice to see the childs belly bloated and him curled up in the fetal position becasue his belly hurts then you are racking your brain trying to think waht did he eat. We have found that even some things he could eat in small amounts there are times he cannot have them because his enviromental allergies also play a roll and increases his sensitivity. Its like when you go out and its a high pollen day you have to make sure that we bring that tiny expensive bottle of eye drops with you because sometimes putting them in in the morning just doesn't cut it for the whole day. the little prick of a bottle costs us $23.67 and thats with insurance its so small sometimes I cannot find it when I am in a panic it just seems to get lost in the bag becasue it get stuck in something.
Life is all about learning from the day we are born we are learning. Its seem I cannot learn enough there is always somthing new. I have also learned I have to spend more time with Maura becasue she feels that the boys are getting all the attention. she comes shopping and now she will look to see if if there are no no foods in it. She has come to relize that her little brother is not like her friends younger siblings. She thinks her brother is quite cool because he get to eat through a hole in his belly none of her friends younger sibs can do that. When Finny has a seizure she shouts I'll get the camera Eoghan runs the other way. She is becoming wise beyond her years.