Update on Joe,Finnian and Eoghan oh yeah on Maura too

Let's start first with Miss Maurs well her tooth on the top is finally wiggling to come out. I just hope it doesn't come out at school tomorrow.
Joe went back to his regular doc today and everything from his blood work was great. His A1C's were bloody fantastic and so was his cholesterol. She said she has people who are not diabetic have higher A1C's than his. Then she pulled up his CAT scan on the computer and all she was able to tell him that he would become great friends with the urologist with all the stones he has. But if he can tweak his diet like he has been able to help control his diabetes he shouldn't have any problems.
Finnian got his "short legs" as we call them his AFO's today. They fit really nice but now you can see the difference in his legs. He has a really skinny leg and more normal leg but hey if there was a nobby knees contest he would win it hands down. We got ones with designs on them this time they are blue with construction thingy's on them. Only one more appointment for him this week his eye check up.That will be fun.
Now Eoghan, well he has to go for another GI scope with biopsy to check his EE. The lady called and asked if the 1oth was good for us. I just told her you just let me know when to be there and we will. So the next thing she said was " well I have a cancellation on the 3rd do you want to take it? " I told her fine we will be there. So now we just have to wait for them to call to confirm the time of his endoscope. That's alway's the fun part.
So thats all for today

Sometimes you just wonder

Its funny I am not Irish enough to belong, I am not American enough to be taken serious and there isn't a scrap of Italian in me to make Joes family happy.

Whats a holiday in our house with out someone being sick

Well this morning Joe went to the ER with my Dad in tow. I don't know how come men always want someone with him. Well my dad has been giving me updates and the results Joe has kidney stones in both kidneys. Well it looks like his diet will have to change.


So Happy Thanksgiving everyone

Eoghan's GI appointment

Well Eoghan had to go back and see the GI doc today. He was very happy with his weight and his height. Upon checking out (feeling ) around his tummy he said " Someone isn't take his meds all the time" Eoghan got that sly look in his face and didn't say anything. He has to go for another GI scope with biopsy to check to see how is Eosinophilic levels are in his tummy. So Deb will call and let us know when .

He was saying that there are so many children being diagnosed with EE. He now has a few patients with it and even had a patient coming in for a second opinion about the diagnoses. He was saying its harder on the older kids and it also effects them emotionally. Well hey if you have been eating bread for 9 years and all of a sudden you are told all you can have is the special formula and basically lettuce, cucumbers, carrots and ice its hard. He said depending on the how high the levels of the eosinophillic cells are is how he bases his form of therapy. With Eoghan we got the food allergy tests done once he tested positive and started him on prevacid and flovent. Once we got the results of the food allergies we had to take away anything higher than a 2 and that was alot. BUt just by doing that it made a huge improvment. Believe me you learn very quickly to scan through the ingredients on all foods. It is really an eye opener as to how many things have soy in them nearly everything.But we are doing it and for us it is working.

Some children aren't as lucky and can only take the formula and have dum dum

Finnian's Rainbow

For along time I have been saying I am going to do just a Finnian blog well I finally started it. Its starts from the beginning the day I found out that God had chosen a different path for our Finnian to follow. Here is the link www.finniansrainbow.blogspot.com I have also added it under Finnnian's friends to the side. Its going to take time to get it all caught up well I basically have 5 years of catching up to do. But I will. Not to worry you can always catch updates here too but the main focus here on this blog will be the whole family not just Finnian.
So if you want to see how our journey began please visit Finnian's Rainbow

New mantra

As a parent with a child with many issues the hardest one being his uncontrolled seizures. We all spent hours pouring over any bit or scrap of information we can get on understanding this disorder. We learn how to figure out the meds, the doses, the side effects that our child shows not just the ones on every bit of litature on the drug. Do we get so wrappped up in all of this medical jargon? Hell yes we do but we do it for our child. We all get to a point where we wonder are we doing the right thing pushing our child full of crap that years form now they don't know if it will have other effects on them. We try to figure out if we change them from one benzo drug to another will it be the right thing. Or should see about removing half of the crap he is on and see about starting from the begining all over again. We get questioned because we are only the parents and not medical professionals and what do we know. We know what our child was like before we added that we know what he/she was like before the bloody seizure monster hit.

Through all of this people want to know how are we handling it? I will be honest some days its not easy and you question yourself. Am I doing the right thing , may be I should try the other drug or may be they are right and I should increase but I know this, that and the other will appear and right now I am not ready to handle that.But in all of it there are a few lines of a prayer that helps me keep my sanity now mind you I am not the holy Catholic even though I am Irish. But here it is

God grant me the Serenity to accept the things I cannot change ( I cannot change Finnian you decided that this was the life he was ment to have)
Courage to change the things I can ( to make people to understand that inability to accept him for who he is , is the biggest disability not the disabilities he has)
and the Wisdom to know the difference ( I cannot make some one accept him just maybe make them understand)

We are home

Well we came home after another stay in the hospital. The nasty seizures we keep trying to get on EEG don't happen when hooked up but of course happen when not. We did get an MRI done while we were in the hospital after a bit of arm twisting on my part. They had put him in for an MRI the guy from anesthesia came and then the next morning no word of it.They decided that he didn't need one but we would have to wait until Feb to get one done as an out patient. I was a bit peeved. They said when we were at the doc office in September they would order one but found out that the order wasn't put in until the end of October. So the Lioness came out in me and everyone was very surprised. I just said you want to wait until he is more stable the kid hasn't been stable since April and now you want to wait until Feb to do one and oh yeah I'm not agreeing to put him on the new med, my kid has brain issues and its not important well I will have to see about that. Not only did he get the MRI which would usually run about 45 mins to 1 hour he was in the MRI for about 2 hours there were additional test added.I am still holding out on putting him on the medication because I cannot see changing one benzo for another one and still keeping him on all the crap he is on. I gave the doc the link to some of his seizure videos and I asked if she had seen them. She said " Oh yeah the ones on seizure tracker" I said yes thats what Klonopin gave him but at least I know how to treat them. Lets put it like this she didn't know what to say.
On data I was able to find on the wonderful net I got them to agree to reduce his keppra down to see if we could get more control well now we wait and see if it will work.The one thing I did get was for them to finally say "Yes he does have Lennox-Gasteaut syndrome" Its not a great diagnoses its a very hard to treat form of epilepsy and some times medication resistance. I have always known that we would always be chasing after his bloody seizures. Talk about a child keeping you on your toes.

I don't know..............................

You know I did cave in and I did increase his meds just a little not to what they wanted I just went 1/2 way. Did it help not, it brought out even more of those little monsters. They are showing up in different ways and at first you don't , well I didn't, think seizure, not until you keep seeing them and then it hits you like a slap in the face. Then you start to think back to when you saw this first was it before or after then you start to think of the other little things, little twitches, the stiffing of an arm or leg or both. Then you wonder oh well I did give him his meds a little off schedule may be that's what but when you keep seeing them then you know.

I do know that our Finnian will always be fighting the seizure monster but I guess I am like everyone that a pill might cure him. The thing is I think he is on too much stuff yeah I do know it all works for a while and then stops. I feel like I am making my child a junkie because I am always shoving some kink of med down his tube or up his butt to deal with the monsters and I hate doing it but I have to.
With the latest increase in the monsters they are talking about bringing him in and weaning him off something. Normally I would wean on and off but this time they want to wean him off in the hospital I guess they are going to do it quick and they want to be prepared just in case of status. I don' know I am torn am I doing the right thing? I guess we will find out because something has to change.
He woke up screaming at 4:02 am this morning and had another dirty nappy. Its something that has been happening the past few days that he loses his bowel control with the nasty buggers. Watch they will bring him into the hospital and he won't have of do the crap he has been doing at home. It never fails. I am not a paranoid idiot I am just a Mother with her child's best interests at heart.

First report cards of the 2009/2010 school year.

Well Miss Maurs got first honors and she also got an A in conduct. That is very impressive as anyone passing in the yard probably always hears me say "Maura" , "Maura will you stop" , " Maura stop jumping on the bed" its always Maura's name that is getting yelled in the house.
Eoghan got second honors he also got an A in conduct but he always does he is the quite one. Only for that one bad science test when his sugars were whacky and his handwriting he too would have gotten first honors. But I am so happy that he got second honors. He told me he will try harder so the next time he will get first honors. I told him just do your best but we do have to improve the handwriting.
So I am so proud of them

Sleepy Satruday

Well today was just one of thoes days that we didn't even get dressed and hung out on our jammies all day. Well it was raining in the morning and it felt cold so we just deciced to hang out and not do anything at all. Other than feeding the kids and changing Finny thats all I did. No tiding up , no cleaning, no nothing.
I think we all need a day like that every now and again just a day to unwind.But for tomorrow I already have plans. Got to do laundry, go to Costco's and get the kids uniforms ready for Monday morning.
So today was a sleepy Saturday

What does your name mean?

Your name is something that identifies you as a person. We all have poured over the baby name books trying to figure out what we will name our bundle of joy when we figure out the sex of the unborn child or we might have a few on a list and wait to see the child and figure out what name will suit them the best.
Well my hubby has an Italian last name so I wanted Irish first names for my kids he didn't mind. Eoghan was called after his grandfathers, Maura was names for my grandmothers and my twin sisters and then when it was time for our Finnian we didn't know for a long time if he was a boy or girl so we had a list. Boys names Declan Thomas, Finnian James and Rory Michael. For a girl Aoife Marie, Dervla Ann and Rory Michelle. Well Aoife and Rory got taken off the list because others in the family named their children thoes names. So if it was a girl it would be Dervla so for a boy it would be either Declan or Finnian. Well we found out that he was all boy so the girls name got sent to the cutting room floor. So Joe got to decide what name our little man would be called Finnian James.
There really isn't any translation for Finnian but its know as the "fair one" but the best is that Saint Finnian of Clonard who is an Irish saint is the patron saint of Teaching/Sharing.
So I do think our son was well named he is teaching us so much and through him we are able to share our journey of having a child with medical issues.
So what does your name mean?

My wonderful leak

Well its just been a week since wednesday sice I told the super about the leak and finally today they are doing something about it. The best is its a bloody hot water leak again. It was funny I went upstairs to see if anyone had come to check it out and I said to them just tell him its a hot water leak. They were amazed because he had just told them the same thing. How I knew is I have a towel down on the floor in the bathroom by the sink where the water is dripping and when I went to ring it out it was warm.
Thanksgiving is just next week and its my turn to cook and I hope everything will be fixed and put back to normal by then. I sure as hell don't want people comming in and a hole in my ceiling or that then need an umbrella to go to the bathroom. All that was bothering him is that I have colours on the walls adn he can only paint them the off white I told him not to worry I have plenty of paint in the closet for him to put up. Note I said for him to paint I will be damed if I am going to paint again. If he had gone and found the leak last week when I told him it would have only been just a scrape and slap up a bit of paint but not no way he's going to fix it and I will not sign the papers for him untill its finished the right way and he won't get paid. I know I am being a bit bitchy about it but I am allergic to mold and so is Eoghan but its my small man I am really worried about the last thing I need is for crap to get into his chest.

Today I said NO

Can you believe it I told the doctor today NO. They wanted to increase his Banzel again don't get me wrong its is a good drug but its not the answer for Finnian. IF it was we wouldn't have the night time screaming episodes and his "shouting" seizures would not be comming every 18days instead of every 6-8 weeks.
When we started Banzel we were supposed to wean him down or even off one of the other meds he is on but that hasn't happened. Instead all I hear is increase, increas, increase no decrease ever mentioned.
Like my God he is not even 5 years old and he is on 4 yes 4 seizure meds the keto diet and we have trouble getting him to gain weight and he is also on 2 supplememts along with the other crap the singulair, pulimcort xopenex when needed diastat when needed and sometimes we have to give him extra klonopin depending on the type of seizure we have to shut down. What he is on is not the right ones but what do we change. I am opened to revisit Topomax now we have the feeding tube. I do not want to revisit phenobarbital that was a night mare I would prefer to forget.The klonopin is a love hate thing but I would like to see it gone from his daily regime I just hope the withdrawl will be easier than pheno. THe Keppra is a med I never had problems increasing but I think its comming to the end of the working stage. Oh I don't know.
We are going back to the genetic doc in December and if she cannot think of anything else to test him for I think we will go ahead with the muscle biopsy and get things either figured out or ruled out.
Fingers crossed that we can get in for the MRI soon and maybe that will show something new or maybe answers.
Oh today we went and got Finnian casted for new AFO's they should be ready in 2 weeks we went back with the solid ones again so we will see.

Early morning

Well I have been up since just after 4am. Yup he had another screaming/cyring session that lasted for about 2 minutes+. Joe picked him up and he nearly jumped out of Joes's arms. He was compleatly tonic in his legs and his arms were contracted in against his body. Joe had trouble carrying him. He is still very whiney and not himself he did have some congestion in his right lung but a blast of xopenex via the neb shifted it. He probably aspirated his own saliva when he was crying. He keeps rubbing his head like we would do when we have a headache and when I rub his head for him he totally relaxes.
So I guess today is going to be a doozy

The joys of living in an apatrment

Well we have a leak and the best part about living in an apartment is I don't have to pay for it to be repaired. But the down side is the waiting to get it repaired. Now the bloody thing has gotten bigger and I am still waiting. It was supposed to be fixed yesterday but the guys never showed so we went to the super and he said tomorrow but the lady upstairs over me has to go to the hospital for some tests so we will now have to wait until Friday. They couldn't come today because it was a holiday that was just B.S. because all the stores are opened even the home improvment stores.
For now we cannot use the light in our bathroom until the leak is fixed because the water drips down from the light fixutre. So for now all we can use is the little night light well its better than no light. So if they went and checked it out when I first told them about it they would only have to fix the wall in my living room but now they have to fix the ceiling and the wall in the living room and the ceiling and the wall in the bathroom. Not just in my apartment but also the ladies up over me and they also have to fix her hallway by the bathroom. Now I am going to make sure that they replace everything not just scrape it down and plaster over it. I do not need mold growing on the walls I know its not good for anyone but for me its horrible because I am allergic to mold and I lose my voice right away. I am a little froggy but I keep spraying a mold and mildew remover on it to prevent and growth. Never mind me the last thing I need is for Finnian to have any reactions to it

Not working ???????

This evening as Finnian was wrestling the pillow we heard the God awful shout. A fec.... seizure. So I yelled at Joe to get his bag as I watched the colour drain from my wee mans face and his lips turn blue. While waiting for his bag I start doing compressions and the next thing he takes in a deep breath. His colour tuns back to normal and he starts wrestling the pillow again.
No he did not get any rescue meds and by the time I checked his O2 was at normal levels. Well I guess the increase in the Banzel is not working on thoes seizures. Whats kinda pissing me off is now there was only 18 days between this one and the last one. Ok the one tonight was a very mild one but now we have gotten past the 3 hour mark and we haven't had another one so now we wait and see at the 6 hour mark. So tonight me and my lad are camping out on the couch until we hit the 6 hour mark. Then maybe I will put him in to bed and put all his gear in with him just to be on the safe side.
Its 1am and he is still up and all he wants to do is play so we know tomorrow all he will do at school is probably sleep. I just wish we could figure out this "seizure" and get him on the right meds. I should have known that we would probably see one of these because on Saturday he was having problems not peeing and I nearly catherized him, but then on Sunday its seemed like he couldn't stop going.
Blasted seizures

Maclaren recall

There has been a huge recall on Maclaren strollers that were made since 1999. The company will issue a statment on Tueaday. I of course could not believe it there is a problem with the hinges that children are getting their fingers hurt, smashed and even have been a few chopped off. So they are going to be giving out some kind of hinge covers to stop this from happening. I wonder if Finnians special need Maclaren will fall in to this catagory it basically has the same hinge mechanisim.
Its funny I always had the kids stand clear while I would be opening or closing the buggy because I was always afraid that they might get their fingers pinched. Its the same as the doors I even still have the bumper guards on them. I still even have the child locks on the cabinets even though they an open them. I guess its just peace of mind.
I have always loves my Maclaren buggy and for the last 10 years have used a Maclaren buggy. I got the special need buggy for Finnian because our elavator went on the blink and to be honest it was not easy bringing 3 kids and a wheelchair up and down 4 flights of stairs. Evne now he uses his buggy for going to school. He gets put into a carseat on the bus so its just someting for getting to the bus and getting off the bus. He has a chair that he uses at school so he really just needs something to nip back and forth to therapy in so it works. It would be great if they could make the special needs buggy so that it would recline back just a little it would then be the bee knees.

Too much crap

I always say I am going to go through everything and only keep what I need but it never happens and I end up with piles of crap stacked up all over the place. So today I decided to tackle our bedroom and so far I have gone though so much. I have thrown out well not thrown out but put in a bag a whole load of clothes I have no idea why I was keeping them they don't fit. Why do I have comforters stuffed in to pillow cases and put up on the top shelf in the closet? If I wanted to use them they wouldn't be in pillow cases on the top shelf I would be using them on the beds.Then I always wondered why I could never find the pillow cases duh they are on the top shelf with a comforter stuffed in it. Why do we always save the good sheet from a set when we know we will probably never uses it because its not a com pleat set.

I don't have the room to keep it so out of my house it will go. I don't need it so it is all being added to the pile to be donated. We live in a very large apartment but when you keep everything its not very large anymore. There are 5 of us living here and we all need our own space for all of our crap. Then add all of Finnian's supplies that we get delivered monthly I need place to store all of them. We have gotten told by family "you need to move into a bigger apartment or move into a house" First off we don't have the money for a down payment on a house and secondly if I moved into a bigger apartment I would just be getting another bedroom and people would still be complaining. So I am just going to weed out all the crap I don't need and we will fit just fine.
So my new motto is "don't use, don't need , recycle" and hopefully I can downsize the amount of crap I have.

Saturday

Well today myself and my side kick went to an epilepsy conference. This one was at Columbia and there were speakers form Cornell, Montifiore, another hospital in Long Island and Columbia.
It was a very nice day out and Finnian was very well behaved well he slept through alot of it or maybe prentended. At one time I gave him a toy and of course he started brushing it back and forth accross his teeth and it was making very loud squeaking noise and I told him to stop and he told me as clear as day "NO" everyone started laughing and of course he thought that was so funny and had to join in.
I didn't really learn alot because I have heard it all before. The parent to parent talk was interesting. I even got up and told Finnians story. All everyone wanted to know "how does his siblings treat him". You know its not something I would normally think of but Eoghan knows that he had a stroke and that he would be different and Maura just thinks he is supposed to be baby like because he is Finnian. She knows that her friends younger siblings are not like her brother but they are not Finnian. They also wanted to know what was their reaction when he had a seizure. Well to be honest now all they do is fight over who will get the camera and who gets to turn on the oxygen machein when he has a shout seizure. Its something that they are used to so it doesn't phase them any more. All they want to know does he have to go to the hospital so they can have a sleep over at Nannys house.
IF you get the Vigabatrine here in the US via the Share you will get a letter to let you know you have 3 weeks to get an ERG done and you have to get them done every 3 mths in order to keep getting the drug. But for us its not too bad I guess in some ways because Finnian is legally blind and most times doesn't react to light. Well from his stroke his right occipctpal lobe was basically shot and his left occipctial lobe is now a hot spot for seizures and they have done alot of damage so his vision processing center in his brain doesn't work even though his eyes are with out the lenses due to the catracts are perfect. We don't even put his contact lenses in any more because he keeps popping out the right lense we just put his sun glasses on when he goes out side.

Going to try a new type of button

Well I was right he can do with a shorter button and we are going to try an AMT mini one. IT is Mic-key extension set compatitable. The nurse said alot of people have been complaining about the ballons on the type we are using. So we will give the new one a shot and see what happens. I told her that if we were having trouble with granulation issues there wouldn't be a problem with us switching back aand the answer was no problem.
So she is putting in the order for the new button with a second one for back up and extension sets. We don't have to change his button until we either have a problem with the balloon or its time to put in a new one. These new buttons are a much flatter and they lay closer to the skin so it hopefully will be alot easier on him when he lies on his belly. They also have a longer life so it means they should not have to be changed as often. We were changing his every 2 mths but we were told with the new one it could last up to six mths.
So we will see
Hi Lori and thanks for seeing us on such short notice

Up date on the button

No the new one didn't fall out "yet". I called the NP in the surgical department and we have an appointment to see her on Friday. She will check him out to see if he needs a shorter one. She thinks its because we have to put the max of water into the balloon and they are not as stable so they pop. Yes we only put distilled water in the balloon so its not that. Well its been a year since we saw them in that department. We were there right before Laura retired. She was great so relaxed and told me "don't worry there is only one place for it to go right into his tummy" I remember the first time I changed the button I just followed the steps and one two three I had done it. THanks to Laura and her confidence. So on friday we will meet Lori for the first time.
I also called and got appointments for the boys for their orthoics thats next week and I also called and go another appointment for the genetic doc for Finny. Her first available appointmnet is Dec 21st so I took it. Don't know if she has found anything but it was the neuro department that keep asking when was my next appointment. Maybe she has some answers but thne again who knows. Finnian is one of thoes cases that he is such a puzzle and nothing fits. Haven heard anything about his MRI they said it could take up to 3 mths since they have to knock him out to do it. I hope we hear soon .
Maura came home with the papers to get the H1N1 vaccine at school well so did Eoghan but he cannot get it. So I gave permission for her to get the shot only not the internasal vaccine. I don't need her coming home slobbering all over Finnian and passing on the virus. Haven't heard yet when they will get vaccinated.
So thats it

It fell out...........

THis morning after Bonnie Finnian's nurse came in I was telling her that I think its time to change his "belly button" again. We have been having some problems with the balloon on the tube. She went in to Finnian and all I heard "I hope you have a spare because this one fell out" Of course I take off in and sure enough there it was in the bed beside him. There was basically no water in the balloon. I had called the company to see if there was an issue with the button but they are going to send me a replacement and aslo a kit so I can send the defunk one back. A very important thing is when you change a button make sure you keep the box as they want to know what the lot number of the product is so they can see if there is a problem with a certain batch of buttons.
I had a spare so Finnian is all back together again. We are going to see how long this one lasts the last one was only in for 6.5 weeks. So now we just have to wait and see what happens with his one maybe we will have to change to a different brand.

Epilepsy Awarness Month

November is Epilepsy Awareness month so please wear a purple ribbon to show your support for all the children and adults that have epilepsy.
Most people don't understand what epilepsy is and how it effects the child/person. We have to educate people.