Our lad Finnian had such a great day on Saturday at the beach and he totally blew my mind when he sat up on his own for so long with only a readjustment or two. Don't know if it was the sensory input from the sand and the water that gave him the ability to balance himself like he did. But he hasn't been able to sit up like that on his own since. I guess his brain was functioning "normal" on Saturday and it has been mis-firing since.
Sunday evening/night he was a bit off but I just put it down to over stimulition on Saturday and last night he had a few crying spells. The usual ones that last for about 1minute and then he stops in mid cry and he is back to normal sleeping. They cannot say if these are seizures as they have never gotten them on an EEG but I believe they are. Well as a parent you get to know your childs cry's, especially when they are non verbal and cannot say whats wrong. When he has one of these "spells" he doesn't react to any hands on input. Even if you pinch him you get no reaction normally any sleeping child will pull away if you did that. I have been asked if they could be night terrors well they are not like anything I have read about night terrors but then again I am not Doctor that specializes in neurological disorders I am just a Mom.
Its like when you go to a new doctor and you tell your childs history to the first doctor you meet and then another comes in and asks you the same questions and make notes then you see the 2 doctors talking and comparing notes you feel like saying "Hello I am taking my child to you because he needs your specialized care and my story is not going to change." There are other times you feel like saying " Do you think I would waste my time and your time if my child does not need to see you? We are only here to see if you can add something to finding out what is going on with my son's brain". You still don't get all the answers because they don't know either.
Tuesday, August 31, 2010
My Review of Standard Finger Pulse Oximeter
Originally submitted at AllegroMedical.com
Mabis DMI Standard Finger Pulse Oximeter The Standard Finger Pulse Oximeter is small, light weight with a large LED display that has two display modes. The finger pulse oximeters standard size accommodates finger sizes from pediatric to adult. Get long battery life with the low power consumption a...
Works great on kids
By Special needs Mom from Bronx, NY on 8/31/2010
Pros: Lightweight, Effective, Good Value, Easy To Use
Cons: None
Best Uses: Children, On-the-go, Daily Use
Describe Yourself: Budget Buyer
I use this product on my 5 year old son. It only takes seconds to get a reading. We have a bigger unit that takes longer to get a reading so we use the Mabis until we get the other unit set up on him. It much easier to pop this into your bag than our other unit for when we are out and about.
I would reccomend product for both adults and children.
(legalese)
Saturday, August 28, 2010
Orchard Beach
Finnian in his beach tent getting some sun on his legs
Joe, Eoghan, Maura and Finnian
Eoghan, Maura and Finnian
Maura
Look I need to get some sun on my body
See what I did today at the beach I sat up all on my own and enjoyed the water and the sand
Eoghan making sandcastles
Maura
Do you see the big drool hanging from my mouth?
Maura swimming
I'm not sure about thisToday we went to the beach and everyone had a great time and got some sun. I think the biggest and the best thing that happened at the beach was our Finnian sat up supporting himself for at least 15 minutes and I was able to get some great shots of him sitting.
THis has always been a dream of mine that someday our Finnian would be able to sit on his own. In the past he has been able to sit for about 3 mins on his own but today at the age of 5 years and 7 mths he sat for more that 15 mins at the beach in the sand by the water.
Since we have added a medication for his Dystonia and got his hips fixed he is starting to do "new" things. He now can roll to the right and now likes to sleep on his right side. He stopped being able to roll to the right over 3 years ago when his seizures were off the wall. So what does this prove ? when everything is in harmony they can achieve "new" things. Well just look at our Finnian.
Another funny story about our beach trip today. The last picture that I put up of Finnian where I put the caption " I'm not sure about this" Well right after I took this picture Finnian he gives me his sign for "wet nappy". So I tell him that it was the sea that gave him a wet nappy but he told me "No" So I asked did you make pee pee?" get the sign for "yes" and "did the sea make Finnian have a pee pee?" get the sign for yes again. So its not a good idea to go to the beach with a child you are trying to toilet train . Like today Finnian knew his swim nappy was wet and he was letting me know he needed to be changed
Monday, August 23, 2010
Good blood results and a med decrease
We went the other day and had Finnian blood levels checked out. So I got the results today and everything is in the normal ranges. His ALT levels have increased why we don't know but at least now he is getting up to normal levels.
We have started to decrease his Vigabatrine (Sabril) and so far so good nothing has popped up. This is one of the meds I am nervous to decrease but hopefully he has truely out grown the Infantile Spasms. Its 4 yeas and 8mths since he started on the Sabril, this is the one med he has been on the longest. We were lucky that it did work on the spasms and in many ways it gave him back to us. Now if we could just get better control over the other seizures that he has that would be great.
His ear infection is so much better and he now can roll to the right. THat is something he has not been able to do on his own in a very long time I think almost 2 years. Something else he is now doing is dropping his toys over the side of his bed on to the floor thats a first. Hopefully we will continue to see more "first" from him.
We have started to decrease his Vigabatrine (Sabril) and so far so good nothing has popped up. This is one of the meds I am nervous to decrease but hopefully he has truely out grown the Infantile Spasms. Its 4 yeas and 8mths since he started on the Sabril, this is the one med he has been on the longest. We were lucky that it did work on the spasms and in many ways it gave him back to us. Now if we could just get better control over the other seizures that he has that would be great.
His ear infection is so much better and he now can roll to the right. THat is something he has not been able to do on his own in a very long time I think almost 2 years. Something else he is now doing is dropping his toys over the side of his bed on to the floor thats a first. Hopefully we will continue to see more "first" from him.
Friday, August 20, 2010
The puke monster is back
We had been doing very well with Finnian not puking but alas the puking has returned. But he has a horrible ear infection the tube is doing its job and there is so much crap draining out of it. His eardrum is still puffy so there is still more crap to come out.
So the number 1 symptom Finnian has with ear infections is puking. Hopefully he won't lose his recent weight gain he has never been 36lbs before.
He is on ear drops for the infectionso hopefully it will clear it up if not we have to take a trip to the ENT to get his take on the ear.
So the number 1 symptom Finnian has with ear infections is puking. Hopefully he won't lose his recent weight gain he has never been 36lbs before.
He is on ear drops for the infectionso hopefully it will clear it up if not we have to take a trip to the ENT to get his take on the ear.
Monday, August 16, 2010
Sunday
Well to be honest I don't know what came over me today but I painted the kids room. Its a a funky blue called liquid blue. They were sooooo happy that I finally decided to do their room up. They have been living with Mammy beige on the walls for a good while now. We moved the 3 kids in to the same room about 1 1/2 years ago and we moved in to the smaller of the 2 bedrooms. So slowly bu surely I have been changing the colours in every room in the house. The kitchen is the last room to be painted but I think the hallway needs to be done again as I now have too much blue in the house.
I think we will be taking a trip to Ikea for some ideas. We need to get something for the toy storage and also for the game system. While we are there I might see some funky covers for their beds too.
I am tired and sore from moving the furniture the room so the kitchen can wait for another few days. Now I have to get into the kids closets and start getting rid of the clothes that don't fit so I guess I will be making a trip to Big Brother/Big Sister with a few bags.
I think we will be taking a trip to Ikea for some ideas. We need to get something for the toy storage and also for the game system. While we are there I might see some funky covers for their beds too.
I am tired and sore from moving the furniture the room so the kitchen can wait for another few days. Now I have to get into the kids closets and start getting rid of the clothes that don't fit so I guess I will be making a trip to Big Brother/Big Sister with a few bags.
Saturday, August 14, 2010
I have redone Finnian's blog
I have revamped Finnian's blog you can find the link here
www.finniansrainbow.blogspot.com
Finnian's Rainbow is just about Finnian but of course we will all be showing up in it ever now and again. I know I must be crazy to be doing 2 blogs but because Finnian is so involved medically I wanted to have a blog just for him and his issues.
So please check out Finnian's Rainbow
www.finniansrainbow.blogspot.com
Finnian's Rainbow is just about Finnian but of course we will all be showing up in it ever now and again. I know I must be crazy to be doing 2 blogs but because Finnian is so involved medically I wanted to have a blog just for him and his issues.
So please check out Finnian's Rainbow
Tuesday, August 10, 2010
LGS Foundation Support Group/Dinner
Last night I got to go to the city and meet with other parents and caregivers who have a child/adult with Lennox-Gastaut Syndrome. It was nice, just a small group of people but hopefully it will grow.
What is LGS?
Well Lennox-Gastaut syndrome is a rare and severe form of childhood onset epilepsy. The characteristics of the syndrome include; Frequent seizures, multiple seizure types, a resistance to medications, mental retardation, regression, behaviour issues and an abnormal EEG with slow spike and wave discharges.
Some of the known causes are Brain injuries associated with pregnancy or birth, developmental malformations, a history of Infantile spasms and in 30-35% of cases, no cause can be found.
For more information you can contact www.lgsfoundation.org
LGS was first mentioned on an EEG report of Finnian's when he was just 24 mths old. At that stage he had been diagnosed with Infantile Spasms and other seizures. The IS was basically controlled with the Sabril but it was the other types of seizures that we were trying our best to control with medications. We would just get one type of seizure under control when another would pop up and the cycle would continue try another medication and add on to what he was already on. We started the Keto diet in December 07 and with in a week his head drops had stopped that was a huge improvement compared to a head drop every 3-5 minutes while he was awake. We are still on the keto diet with 3 medications he is not seizure free and probably will never be. We have seen regression when his seizures were off the wall and once under control we have seen improvements but it takes time , along time for them to relearn the skills they have lost and sometimes they never regain the skills they had take for example Finnian no longer has any speech and his vision is nonexistence.
Many people think oh he just has seizures and with medication it will be controlled not in Finnian's case. I have ben asked "Do you give him all of his medications?" What a stupid question are you an idiot do you think its nice to see your child have seizures, scream for hours on end, have them puking for days and have them in constant motion because they might not be have a seizure that you can see but they are having electrical storms that are affecting some part of their brain that is causing them to have thoes symptoms. Seizure suck.
By the way Thank You Christine for the lovely night and the dinner.
What is LGS?
Well Lennox-Gastaut syndrome is a rare and severe form of childhood onset epilepsy. The characteristics of the syndrome include; Frequent seizures, multiple seizure types, a resistance to medications, mental retardation, regression, behaviour issues and an abnormal EEG with slow spike and wave discharges.
Some of the known causes are Brain injuries associated with pregnancy or birth, developmental malformations, a history of Infantile spasms and in 30-35% of cases, no cause can be found.
For more information you can contact www.lgsfoundation.org
LGS was first mentioned on an EEG report of Finnian's when he was just 24 mths old. At that stage he had been diagnosed with Infantile Spasms and other seizures. The IS was basically controlled with the Sabril but it was the other types of seizures that we were trying our best to control with medications. We would just get one type of seizure under control when another would pop up and the cycle would continue try another medication and add on to what he was already on. We started the Keto diet in December 07 and with in a week his head drops had stopped that was a huge improvement compared to a head drop every 3-5 minutes while he was awake. We are still on the keto diet with 3 medications he is not seizure free and probably will never be. We have seen regression when his seizures were off the wall and once under control we have seen improvements but it takes time , along time for them to relearn the skills they have lost and sometimes they never regain the skills they had take for example Finnian no longer has any speech and his vision is nonexistence.
Many people think oh he just has seizures and with medication it will be controlled not in Finnian's case. I have ben asked "Do you give him all of his medications?" What a stupid question are you an idiot do you think its nice to see your child have seizures, scream for hours on end, have them puking for days and have them in constant motion because they might not be have a seizure that you can see but they are having electrical storms that are affecting some part of their brain that is causing them to have thoes symptoms. Seizure suck.
By the way Thank You Christine for the lovely night and the dinner.
Monday, August 9, 2010
Some Summer pictures
Piggy on a spit
around he goes
poor piggy but he tasted great
Graduation cake for Rebekah and Aidan
Aidan
Ranger
Finnian
Relaxing in his beach tent
and again
beach grass
sea gulls
taking a drink
Eoghan
Finny
Miss Maura
Eoghan, Maurs and Finny
and again
Handsom Eoghan
Sea gull
Beach vultures
Clean up time at the beach
See my new shades
I got 2 pairs right off the shelf that fitSaturday, August 7, 2010
Our Neuro follow up
Finnian had his neuro follow up on Thursday and when they weighed him he had put on almost 4lbs in a month. I couldn't believe it but then again he had not thrown up since he got his tonslis out and the new set of ear tubes put in. His seizures have also been reduced since the surgery. The out come of the appointment we will start to reduce his Sabril once we get his blood levels done. This is the one medication I have never had any issues with but because of his age its more than likely he had out grown the Infantile Spasm seizures. We now see more Myclonic than IS well to be honest I haven't seen an IS seizure in about 1 year. The goal now is to get him down to 2 seizure meds with the diet instead of 4 with the diet. It just goes to show that any little thing can cause his seizures to go crazy. In his case it seems that the retracted ear drums could have been causing something like vertigo or on the lines of motion sickness and thats why he was throwning up so much. We have even reduce his Prevacid to just one dose a day. I don't believe in shoving meds in to them if they are not needed.
Also since starting him on the Artane for the movement his tightness is not there and now we have no problems opening his left hand and its much easier to put his braces on his legs. He seems to have more control over his movments as far as playing with his toys as he now doesn't keep his arms extended and the jerky movements are now not there.
Over all since the surgries he is healthier, happier , having less seizures, not sleeping as much and begining to act more like a child his age. Now all we can hope is he will get some of his speech back and hopefully get him up on his feet and may be get him moving with the aid of a gait trainer/walker. Well I hope
Also since starting him on the Artane for the movement his tightness is not there and now we have no problems opening his left hand and its much easier to put his braces on his legs. He seems to have more control over his movments as far as playing with his toys as he now doesn't keep his arms extended and the jerky movements are now not there.
Over all since the surgries he is healthier, happier , having less seizures, not sleeping as much and begining to act more like a child his age. Now all we can hope is he will get some of his speech back and hopefully get him up on his feet and may be get him moving with the aid of a gait trainer/walker. Well I hope
Friday, August 6, 2010
Make you wonder
I got a call from the Department of Education asking me if Finnian was going to go PO10x. At first I didn't know what school she was talking about and then it hit me. SO I tld the lady that I had visited the school on June 2 and I ditermined that it was not the right school as they would not be able to give him his services on his IEP. I had submitted a letter to the placement board on June 4th I should say hand delivered it to the placement officer that we were not accepting the placement. So I asked her if she would like a copy of the letter that I had hand delivered to the the placement officer so she did and I faxed it to her. You kind of wonder what is going on down there.
The schools are under staffed and to make sure that the kids get their alloted serviced they get 1:1 serviced changed to group services. You kind of wonder how in hell can you give group services to a child who is non moible, non verbal and blind. I have sent off the papers to a group that is will to help Finnian get the education and therpies he needs so fingers crossed they will come through and he will get in to a school that will be the right one for him.
The schools are under staffed and to make sure that the kids get their alloted serviced they get 1:1 serviced changed to group services. You kind of wonder how in hell can you give group services to a child who is non moible, non verbal and blind. I have sent off the papers to a group that is will to help Finnian get the education and therpies he needs so fingers crossed they will come through and he will get in to a school that will be the right one for him.
Wednesday, August 4, 2010
Wednesday so far
Well the thingy popped off a few more times so wehn I went to the doc's office I told them. They revviewed the results and all it showed were some pauses from that lead. So in other words the 24 hour moniter was all normal. Then I did the stress test on the treadmill and I was hoping it would go faster becasue I was nearly tripping myself. So it finally got up to my pace and I just relaxed and kept walking. Everything was normal blood pressure, heart rate and pulse rate.So I just have to go back in 4 mths to see her again for a follow up.
Later today I have to go for my ultrasound on my liver and fingers crossed I don't have a gall bladder still there. I was supposed to have had it removed in '98 so hopefully it was taken out and not just emptied of stones. Next week I go to the blood doc to see if he can make head or tails over my high count again. Other wise I feel normal I have a bit of cold/ allergies don't know which but I am not sick so I guess it is allergies.
So thats all the news I have for now will update later wehn I find out the status of my gall bladder
Later today I have to go for my ultrasound on my liver and fingers crossed I don't have a gall bladder still there. I was supposed to have had it removed in '98 so hopefully it was taken out and not just emptied of stones. Next week I go to the blood doc to see if he can make head or tails over my high count again. Other wise I feel normal I have a bit of cold/ allergies don't know which but I am not sick so I guess it is allergies.
So thats all the news I have for now will update later wehn I find out the status of my gall bladder
Tuesday
Well today I went to the cardiologist and got a 24 hour moniter put on but I can tell you it will have to be done again. You are all probably wondering why? well the leads keep coming off. I have even put extra tape on but one of them keeps popping off. I don't have any creams or lotions on so I guess I just have cheap tape.
Tomorrow I go back and get the thingy off and then I do a stress test all it means is I get to walk on a tredmill. Then in the evening I go and have the scan done to see if I have anymore gallstones. I have to go with an empty stomach so I won't be having any lunch or anything to drink so nothing after 10am.
Finnian had a great time at school you know since he had the new tubes put in his ears he is a really different child in the best of form every day. I am so glad that I pushed for them to be done.
Tomorrow I go back and get the thingy off and then I do a stress test all it means is I get to walk on a tredmill. Then in the evening I go and have the scan done to see if I have anymore gallstones. I have to go with an empty stomach so I won't be having any lunch or anything to drink so nothing after 10am.
Finnian had a great time at school you know since he had the new tubes put in his ears he is a really different child in the best of form every day. I am so glad that I pushed for them to be done.
Tuesday, August 3, 2010
Monday, August 2, 2010
Living our lives without him
Its almost 6 weeks since my Dad's sudden passing and you know there isn't a day that I go out and don't look to the park bench to see if he is sitting there. His park bench buddies don't sit on that bench anymore as he isn't there to sit with them, they sit on the next bench down. Joe even says its not the same anymore when we all go in the van together as he is now not squashed in the back seat between Eoghan and Maura. I drive and Dad used to be my co-pilot, Mam the navigator, sits next to Finnian right behind us and then Joe and the 2 were always in the back seat. Now I still drive but now my navigator (Mam) is in the front with me and Joe now sit's next to Finny.
Was over at Mam's the other day and she points to the loveseat where Dad always sat when he was in the house. There are cushions carefully placed where he sat and a cushion on the back of the loveseat with a pair of sunglasses left on top. Of course I had a qustioned look and Mam said " Maura does that and says "its Grandad" I didn't know what to say. I know that Maura will sit on the loveseat and have a conversation with her self and when you ask "Who were you talking to" she always says "Grandad". Mam is doing good as she says she just has to live her life now with out him.
Was over at Mam's the other day and she points to the loveseat where Dad always sat when he was in the house. There are cushions carefully placed where he sat and a cushion on the back of the loveseat with a pair of sunglasses left on top. Of course I had a qustioned look and Mam said " Maura does that and says "its Grandad" I didn't know what to say. I know that Maura will sit on the loveseat and have a conversation with her self and when you ask "Who were you talking to" she always says "Grandad". Mam is doing good as she says she just has to live her life now with out him.
Monday, Monday
Well we survied Finnian's appointment with the brace guys. He didn't scream too much today. It was funny one of the guys came into the room and said " I thought that was Finnian I heard". He calmed down and we got through the fitting fine. So now Finnian has his new KAFO's he will be standing more and I don't care if he screams the house down its for his own good he needs to build up his legs again.
Eoghan got casted for his shoe inserts so they should be ready in about 3 weeks so we will have plenty of time to get shoes for going back to school. I already got Maura's shoes for school they were on sale in the Stride Rite outlet. Eoghan is harder to fit because of the inserts and he also has to wear shoes not sneakers to school. So that will be fun.
Eoghan got casted for his shoe inserts so they should be ready in about 3 weeks so we will have plenty of time to get shoes for going back to school. I already got Maura's shoes for school they were on sale in the Stride Rite outlet. Eoghan is harder to fit because of the inserts and he also has to wear shoes not sneakers to school. So that will be fun.
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