A busy week and and even busier one next week

For a change it wasn't Finnian that had all the doctors appointments this week he only had 1 it was his ENT follow up from his surgery and everything looks great. Maura had a 'Tea Party' birthday party on Wednesday down in the city which was great fun. It was also nice just to spend time with just Maura. It made her feel so special.
I was the one that had the 2 doctors appointments. First I had to go to the cardiologist well I have a little issue with my HDL being very low and they don't know why so my doctor just wanted me to get my heart checked. Everything seems to be greatand you know I still have my heart murmer. It cannot be heard with a stetascope but it showed up on an echocardiogram. ITs teeny weeny and on the left side of my heart so its not something that I have to worry about. Next week I have to get a 24 hour moniter put on and also do a walking stress test to see if anything will show. On Thursday I had my GI follow up and everything is good with my belly so now they are just waiting to see if anything will show up on the ultrasound. They are looking for gallstones. I haven't had any more attacks which is great but they just want to see if there are any more stones. I have that appointment next week too.So we got throuhg this week with appointments 4 in total counting Maura's birthday party and next week we have 1 for Eoghan, 2 for Finnian and 3 for me but who is counting. I have to go back to the blood doctor again as my red blood cells are whacky again. Never a dull moment in my house

SUDEP Aware www.sudepaware.org

SUDEP Aware www.sudepaware.org: "Unmasking Silent Killer in Epilepsy"

SUDEP

This is a hot topic coursing through many sites but it is something that might never be mentioned to a parent, caregiver of a child or adult with Epilepsy. SUDEP is sudden unexplained death in epilepsy. Here is a link to an article in the New York Times http//:www.nytimes.com/2010/07/27/health/27epil.html

Sunday and Monday

On Sunday we went up to my sisters house there was a 4 H fair at the Veterans Memorial grounds. It wasn't huge but the kids had a good time looking at the animals and of course the cotton candy. I think we are all suckers for that one. Took some pictures but they are still in my camera. We left early as there was what looked like a huge storm coming but we only got some rain. It was a little different story in the Bronx it looked like a tornado came through there were trees down everywhere and everyone said how it was bright out one minute and the next like darkness. I was happy were weren't home when that happened.
This morning I took the kids to register for the swimming lessons and stood for 4 hours only to be told that it was closed all the classes were full. Well thats what happens when you go for the free things. THe kids didn't care as long as I take them to the pool during the week. Its free, no membership required, no fees its just a public pool. A clean one at that.
Tomorrow I go to the doctor to be checked out as they are a little worried about my cholesteral the good stuff is very low and the total is good they just want to check me out. What fun that is going to be. I aslo have to go back to the blood doc as my red cell are climbing again this time I will have to get the total iron levels checked.
Oh well always something.

We got the script for the new med

Got the new med script in the mail today for Finnian. Went to the pharmacy and filled it so we started him on it tonight. Its going to take 3 weeks to get up to the full daily dose so eventually he will be on 1mg TID. We will just have to wait and see how it goes.

An invitation for 1

My hubby gets a lot of invitations just for himself but he nearly always turns them down. I think the only ones he accepts are the firehouse invite and lunch with some of the guys from work. The rest of them he just blows them off because he feels that they should be for all of us not just him. Take for example today he gets a call from a family member that they are in town and they would like to see him. He was kind of excited at first but then he realized that the invitation was just for him to stop over on his way home for work he changed his mind.
You know I won't push him into going he is an adult and he can make his own decisions. I know I will be blamed for him not going over but you know I don't care. Let them think it was me. Some of them only live about 15-20 minutes away from us but they never come to us in the Bronx. But yet my family can come from overseas and they don't always stay with us but they always come and visit and they always want to see everyone the same with friends.
The thing is we have a differently abled child and they don't know how to accept him but you know that's their loss. It was a different story when I gave Joe the ultimatum either he put his big boy knickers on and accept Finnian as his son or get the hell out. He put his big boy knickers on and said he was scared but you know so was I. Things changed for us that day and in a way I think it made us a better family.

Well we got the word

he will be getting his script and wean on schedule for the medication for the movements in the mail. We have to report any unusual movements and side effects that it might cause him. You know it doesent bother me that I now have to shove more meds into him because it is not another benzo med. I am not fond of benzo's because of the side effects and the addictive nature of the drug. Of all the meds our Finnian is on the one I hate the most is the Klonopin (benzo) it does work but I think we are coming to the end of the working phase and we cannot increase it as his body cannot handle it.

What a day we had yesterday

We always try to get as much out of our day when we go to the hospital for an appointment. So yesterday we did 2 appointments and boy one of them was a rough one. Our first one was with the "brace guy". We usually see John but he wasn't in so we saw Walter instead.Not for nothing we love these guys. They put up with so much crap especially from my son. Do you know we had to leave Finnian had worked himself in to such a state he was like a child possessed. We also had a very important appointment with the Movement Disorder doc. So I asked if we could come back and hopefully he would be in a better mood once he calmed down.
Off to the movement doc we went. You know we are so used to telling our history of events we can nearly answer the question before they ask it. I had a disc of all the "things" we had caught on tape at home. So the doc that had taken the history went off and said she would be back with the Doctor. It seemed like a long time we were sitting in the room but thankfully we were able to lay Finnian down and he had a little snooze while we waited. When they came back in they had reviewed his last MRI and also looked at our disc. He said that Finnian does have a movement disorder as long with everything else. It must be significant enough he even discussed putting him on a medication for it. He agrees with me that the "shout" seizures are seizures but he said that they are coming from deep in the brain and he would like to see some of his EEG's and he would talk to our Doctor. So we find out on the 4th of August if we are going to start this new medicine.
So back to the brace guys we went. Wouldn't you know it he was fine at first and then he became like a child possessed again. I even told his nurse to watch out he looked like he was going to bite her. Next thing she felt him trying to nip her. You know it took 2 of us to hold him down and 2 men to make the cast molds of his legs. You would never think that our noodle was strong but boy you could see when he contracts his tummy muscles he has a really nice 4 pack there. Another thing his eyes were so focused they usually just wander and drift but not when he was in a fit of temper. But we got them done so they should be ready in about 2 weeks so he will be back in the stander and probably pitching a fit but you know its for his own good we don't need for his hips to pop back out.
You know we have dotcors basically scratch their heads and they don't know why he can do some of the things he does. But to see him pitch a fit of temper like he did it just goes to show that there is more connections going on in his head. He was like any child reacting to something he didn't want to do. I told them I would bring ear plugs for them when we go back for the fitting when the braces come in.

is it a calm before a storm???????????

Everyone and anyone with a medically fragile child all take the good days with the bad. When you have a run of bloody fantastic days you just cannot believe it and in the back of your mind you wonder a:- have we finally found the right combo of meds finally or b:- is this the calm before the storm?
Most people say I should be happy and encouraged and that I should not be thinking about a storm. I know they are probably right but you know I have been down that path before only to be knocked in a sense flat on my arse watching my child seize, puke and doing all the things I thought were something of the past.


Well may be our bubble burst of a good run as he was sound asleep and he started crying not his usual cry but his cry of terror. You know its not normal there your child is eyes closed and he is making this gut wrenching whails of terror, tears are running down his face and he is not responding to any form of comfort. Then just as suddenly it started it stops and he responds to the comforts you are giving him and he smiles you know that the episode is over. Now we just have to wait and see if tomorrow we will have our happy smilie little boy.
He has been up since 2:30 am hopefully he will go back to sleep soon as I like my happy smilie full of enery little boy.

Improvments and a boo boo

Since our Finnian had his tonsils removed and new ear tubes put in there has been a change in him. For the good I might add. He is interacting more, trying to talk, more sounds coming out of his mouth, propping himself up on his elbow (he has not done that in so long), being able to tolerate sitting up with minimal head drop and the list goes on. There is one thing since his surgery he is not puking like he normally would with the hot tempatures and we have had HOT temps here in NYC, up to 102. Normally when the weather hits 90 he would be like a wet noodle, puking and sleeping even with the AC going at full blast. Since the surgery we have been out with a wet bandana tied around his head, nice cool water going via feed pump and he has been fine. This new Finnian we all like.
On Friday we had a little accident with his g-tube button. It came out with the balloon still inflated. Well I should say it had help. We had been out and when we came back in he is telling me by hitting his diaper that he is wet. I told him just a minute I am getting your meds and some food and then we will change your nappy and put you in your bed. Well he had a fit so I just took him out of his buggy and brought him in to the room with his extension connected I ddin't even put the side of his bed down just popped him in and the next thing I see his g-tube button come flying out. I just grabbed some gauze and covered it and changed his nappy do you know he stopped crying. It was like he never felt his button come out. I had a spare button and even though it wasn't the right size I put it in. I just had to fill the balloon to the max. Called the nurse and asked if she could order me a new button to have on hand. I think its a waste of time and a waste of Insurance money to go to the ER for them to put an new button in when I can do it all on my own. The nurse wanted to know if he was bleeding which he wasn't because if he was she wanted me to bring him straight down to her so she could check him out. She said she would call in an order for another button but guess what I got today a big box with 1 extension in it you know I will be calling them tomorrow asking where is the button kit.
Another note we are trying to get Finnian to let us know when he wants to pee since he has such issues ( screaming fits) when he wets his nappy. This evening he started to indacate wet nappy I checked him and he was dry. So I asked him "you want to go pee pee?" and I got a yes answer. So he went and I changed him right away and he was very happy. Yes I was very proud of him may be we might be able to train him who knows but I do like this new Finnian

Eye exam

Well our Finnian has his 4th, yes his 4th anesthesia for this year done today. He finally had an eye exam under anesthesia. He had to have it done this way as they could not get a good look at his optic nerves or a good look in his eyes due to eye rolling and non compliance. He also got and ERG done and the results of it was great. Dr. G was very pleased that the cones in his right eye were giving the proper readings. There was some issues with them on the last ERG. So it means that the Sabril is not causing any harm to his eyes. The only thing that Dr.k had to say was that his optic nerves were very pale. So the over all report is his eyes function normally but due to the paleness of the optic nerves the vision is not getting transmitted to the occipital region of his brain so he is blind. They cannot say for sure if he is totally blind as some messages could make their way to the occicptal region of his brain

Over the surgery and doing fine

Well we went in for the surgery on Friday it was a late one. He went in to the OR at 2:45 pm. I had spoken to the doc before and told him my concerns about the tonsils once he heard that there was a safety issue with suctioning him he said "they have to go". He got through the surgery with no problems. The only thing was that his ear drums were contracted and his left one was the worst which he was surprised about. Once he put the new tubes in they came back almost to normal. The best thing was there was no new growth on the anenoids.
He was sent to the ICU and it was great as I was upstairs waiting for him not like the last time. The only thing different about this tube placement and tonsil removal was he is on both oral antibotics and a new antibotic ear drop. The best was we got to come home on Saturday straight from ICU. He was doing fine and they could see no issues with him going home.

Some have questioned as to why he now goes to ICU after surgery well he is a high risk patient due to his seizures and he is sent basically to cover their butts just incase something goes wrong afterwards.

Here we go again

Well we go off to the hospital tomorrow for surgery #3. Its ENT surgery to remove his tonsils, put in ear tubes and to check to see if there is any new growth of anenoid tissue. We got medical clearence form the peds yesterday. While we were there the peds asked if I really want his tonsils removed as they looked great. Yeah they looked great as he had just finished a course of augmentin. But you know its not fair to Finnian to keep shoving antibotics in to him because soon they won't work and then we will have to go to harder stuff. Its also not fair to him as any sickness lowers his seizure threshold. When he had that bug 2 weeks ago the poor child was throwing up so much I was so afraid of aspiration that I was suctioning him but was running into problems as his tonsils were inflamed and I couldn't get the cath passed them. When I put the cath up his nose I was running into the same problem. His O2 stats were low too they were running in the high 80' even when I wasn't suctioning him. So to me there are times when his tonsils are causing safety issues.
So please keep him in your thoughts and prayers tomorrow. We already know he is going to the ICU after the surgery just for percautions. So I hope we will be home on Sunday with new ear tubes and the tonsils gone.