Maura

Well our Miss Maurs is a little under the weather. We got a call on Friday that she had a bit of sore throat but no tempature but could we come and pick her up. It wasn't a big deal we live just a few blocks from the school. So I went and picked her up.
On the way home she is telling me how sore her throat is and I just tell her not to talk so much and she would feel much better. So as soon as we get all she wants to know am I going to take her to the doctor. I told her no as she didn't have a tempature that we would wait and see what would happen. Well she did throw up a few times later on in the evening and the highest her temp went was 100.0. So I just gave her some Calpol to make her feel better.
Then on Saturday she was fine and then she would hit a low when her temp would pop up. But the highest it went was 101.0. The only thing she complains about is her throat but all I cna see is its a bit red and one of her tonsils is a little inflamed but no infection.
Today she is hopping all over the place and talking soo much. She is eating and drinking like she would do on a normal day. Then this evening she says look at my body I have a rash. Sure enough she does so instead of her going to shool she will be going to the doctor. She will have to be checked out for strep but for now she doesn't have a temp just a bit of a sore throat and a rash just on her body.

Am I an idiot or what!!!

Well today I scrubbed and I mean scrubbed the bathroom from top to bottom. I even re-sealed where the tiles meet the bath tub.Put up new shower liners and finally took down the Santy shower curtains. We have an old porcelain bath tub which is slick as hell when wet so we use a tub mat. So I had gotten a new tub mat and not thinking when I bought it. So I opened it and put it down and was standing at the doorway admiring my handy work when my hands started to itch like crazy. I couldn't figure out at first why this was happening I had not used anything that should do this. As I look at my palms it hits me ..... The tub mat . I look at the label and its made of Latex. What an idiot I am allergic to latex.
So now I have shiny scarlet red palms from touching the bloody thing. Thankfully I have Benadryl tablets and cream.
I cannot believe I did that. I am so careful when it comes to the kids I forget my allergies. I just have to remember to wear my flip flops in the shower until I can get a more "friendly" tub mat for me.
What an idiot I am

Happy 5th Birthday Finnian

Happy 5th Birthday Finnian.

In the last 5 years you have taken us on the biggest experience of our lives. From day one you have beaten the odds and done things they never thought you would. You have had a few surgeries, a lot of hospital stays, you take a load of medications and even dislodged a breathing tube while sedated.

You have a list of symptoms the length of my arm but to date you are still undiagnosed with a syndrome or disorder. We have watched you have seizures and have shoved medications in to you to stop them. We have seen you regress but at the same time you make progress.

You might not be able to do things like a normal 5 year old but you do your own things in your own way. We love you for who you are Our Finnian.

So Happy 5th Birthday Finnian.

Oh wow What a Saturday night

On Saturday morning Finnian woke up with a huge snotty nose there was gunk all over his face, hair, pillow it was just everywhere. I was very happy about it because I am thinking , Yes his sinuses are finally draining. As the day wore on he was a bit on the sleepy side but we went out for a jaunt around the block well we had to get milk.
In the evening he was his jolly old self laughing, kicking, pushing up on his hands and trying to chat up a storm. The one thing he was drooling a lot.
He got his meds and his feed and he was chilling out on the couch with me watching Ghost hunters and he would laugh every time some one screamed. He was on his belly and next thing I looked over at him and I knew something wasn't right. Rolled him on to his back and there he was as white as a ghost and his lips turning blue. Well I'll tell you my heart started beating at a mile a minute. So I just got his bag and started checking him out. His heart rate was 187 and his oxygen levels were 70. So I hooked him up on the oxygen and he began to fight me. I didn't blame him how would you feel if some one shoved something up your nose? His oxygen levels came up to the mid 80's and that was on 2 liters of O2 so I just kept moving him until I got it up to 90 but it would drop down again. I checked out his lungs and you could hear crackles so I just pulled out the nebulizer and gave him a breathing treatment. The I started some chest therapy to move the gunk out of his lungs. Well it seemed to work and his oxygen levels came up but if you lowered the oxygen they would drop. So he spent a few hours on the O2.His heart rate had returned back to more normal levels under 150. So I was going to stay up watching him but Joe said he would just along as I showed him what he had to do. So I just told him as long as his O2 stays up above 92 every hour you can turn down the oxygen a half a liter.
This morning he was fine like as if nothing had happened. We went to Church as Nanny was having a Mass said for Finnian as his birthday in this week. We did go to Church with his pulse ox on and the canister of oxygen in the basket. Just in case of an emergency. He had been doing really good sitting up a good bit today but he threw up and what a mess like the snotty nose it was every where. He is back to his silly self again.
Now the big question was it a seizure? I would say Yes. Was it a bad one? Well he did need oxygen. Now the other thing is it because we are reducing down one of his meds that this happened?, Is it because of the weather and may be because of his sinuses draining?, or was it the seizure we were waiting for but it showed up in a different way? It could be a bit from all of the above. I think I will be definitely sleeping with one eye opened form now on.

Doctors visit

Well today we had our follow up visit since he was in the hospital. Got copies of his MRI report and a copy of his EMU addmission so I have a lot of reading to do and some things to check out. The base of the report there aren't any main changes in his new MRI reoprt. The usual about his Corpus Callosum is atropic, Microcephaly is noted, bilateral volume loss with the right being greater. The one thing noted thickned fluid in his sinuses the poor child no wonder he is always rubbing his head it hurts.
Hopefully with the removal of the tonsils and placement of the bilateral grommets it will open up the normal drainage of the sinuses.
the good news is we got the go ahead to reduce down his keppra even more. Since the first reduction of 125mg TID we have seen an improvment may be the Banzel is working the way it should who knows. Is it the answer for our Finnian? Well right now it seems to be.
He had been kind of off the last few days but then again we can put it off to the change in tempature. But at the same time he seems to be enjoying standing up and is doing great in pushing up on his hands.
Maura is saying her head hurts i guess her sinuses are acting up too. She has been looking a bit washed out yesterday and today. Well at least its the weekend now so we will see what happens

Home

A few people have taken notice that I refer to Ireland as home. Don't get me wrong I have a nice home here in the Bronx and yes I do live in an apartment. Its my home here with my family, my hubby Joe, and my children Eoghan, Maura and Finnian. I am very thankful to say my parent just live around the corner so in a way it makes it home away from home.
Even though I was born here in the good ole USA I have no memories of being here as a small child. My family moved back to Ireland when I was just a little nipper and I grew up there. I grew up with the music, traditions, old wives tales, home remadies and customs. Even now I am considered to be old fashioned in many ways but hey, thats the was I was reared. Even after being back living here in the Bronx people laugh I have the Holy water font by the door most times its empty but its there. I have a picture of Pope John Paul the second up on my wall I have a picture of the Sacred Heart in the kids bedroom. I have many St.Bridgets crosses in my house. To be honest there is a religious object in every room of my house well except the bathroom. But that was a something I grew up with and I find comfort in it.
The one thing I miss and its something I can't have my children do is making the St. Bridgets crosses. I remember my Dad going out and gettingt the rushes and putting the then on the kitchen floor and we would sit and make the crosses. THere was always one over the door . I guess I do it here to make it home away from home.

I hope I don't speak too soon

I was just looking at the calender and I had to do a double take and make sure I had not missed anything. I even checked on our seizure tracker. Keeping fingers crossed as I type Finnian has not had one of his "shout" seizuers since early December. Now I am not saying he is seizure free because he is not but they were gut punching seizures to watch. He also is not as jumpy and he seems to be able to focus more. Today I even saw him swatting at his mobile that is hanging over his bed. All he kept trying to say "OOH". I asked him " Do you want them to go?" and he answered "yeah" so I turned the mobile back on and he lay there making all kinds of noises as if talking. Cannot say for sure that its because of the decrease in Keppra but I would like to go down even more maybe even take him off of it. Last week he even made an attempt to take a step. Something he has never done unless his legs were moved for him.
Is it a calm before a storm? I don't know but last night his belly was a bit upset. Is it something that usually happens before the storm? sometimes.
We haven't had a crying spell during the day or night for quite a few days now but yesterday we had a few tonic extensions and the same on saturday but hey, I would take them any day over the "shouts".
Hopefully we will get to see his Doc. on the 22nd if the appointment gets changed again you will hear me scream.
Night all

Operation Transformation

I know you are wondering about the title but in Ireland Operation Transformation is on par with the Biggest loser. With the obesity rate on the rise in Ireland even the politicians are getting involved. There are a few groups involved in operation Transformation as well as 5 indviduals.
So well done to the Galway Taxi Drivers for get involved.
So here in the Bronx we are cheering for the Galway Taxi Drivers in their Transformation.
You would never know it might rub off on me too.

The moving up process

Its hard to believe that our Finnian with the help of God will be going to kindergarten in September. We are now working on the moving up process and getting the evulations done. THankfully the school camr through and we are getting the paperwork to go and get his low vision evual done. For Finnian right now I think his therapies are more important than learning how to read so we are trying to push for the school that is only like 6 blocks away. If we can get the addition of vision therapy added on it would be a bonus.
I know that our Finnian is a bit smarter than we give him credit for but if you read his diagnoses all you can say there is no way that this child is doing the things his parents say he can do. But his teachers at the preschool they know the difference. The OT and PT make him mad and he will thne do everything they want him to do. He still can get over on the Speech lady we keep telling her she is too soft with him. Then again even though he is different we still in a way treat him like a normal almost 5 year old.
This morning Maura calls me she needs help with Finnian. I go into the room and there he is sitting on the floor and she is trying to get him into her doll stroller. Yup she took him out of bed thankfully no one was hurt. there he was sitting on the floor and Maura holding on to his hands and he was in stiches laughing and kicking his legs it really looked like he was trying to move.
Today seems to be a great day for him hopefully we will continur to have more of them.

This was a picture of us taken in August of 1999. Oh I wish is was that thin again and I was pregnant with Eoghan at the time. As the years have gone on Joe has lost all the weight and I found every dam pound he lost. Here is to 2010 and hopefully 30lbs less.

Some pictures

Finnian with his glasses 3.5 mths old

Sorry its and old photo My first trip to Ireland. Sitting on my grandfathers knee drinking tea from a saucer

I lve this picture of Finnian

Eoghans first trip home(Ireland)

Me and Eoghan

Eoghans second trip home. Typical boy loves the tractor

Me and my brother

Eoghan and Maura

Miss Maurs

Me

Miss Maurs

Me

About the last update

3 years ago while reading reports of a hospital stay EEG report LGS was mentioned. At the time we knew that he was having more than Infantile Spasms he was 2 years old at the time. They added Topomax which is used also used for IS. After a few more hospital stays we never saw LGS on any reports. His seizures were always written up Generalized seizures secondary to IS.
The bigger and older he got we could see that he wasn't having as many IS seizures but there were others popping up. The head drops were for a while the worst ones. To be honest we gave up counting how many he was having as he was having soo many while he was awake. We put him on the Keto diet and by the 3rd day on the diet he was down to having about 9. That was scary we were counting them again. Thankfully the diet worked in controlling the head drops. Like the IS we now only see the head drops when he is getting sick but not that many.
Always in the back of my mind LGS was there. He has tonic seizures, tonic-clonic seizures, laughing spells, seizures in which he loses his ability to swallow, seizures in which he either goes blue or he lets out this God awful shout and he is not breathing. The latest ones are normally the crying spells during the night in which he has some tonic extensions but they are usually only on one side of his body but are over in less than 2 mins.
Banzel was started and it is an approved drug for LGS in children 4 years and older. So during the last hospital stay when I kind of lost it over the when he would be having his MRI not to worry he had one done during his admission. I saw the doctor coming out from the MRI suite and we had a little chat and I just asked " would you say he has LGS?"The answer was "oh yes".
I just told them that I wanted it to be documented that he has LGS.
Getting a diagnoses of LGS was and still isn't a great one. But with the new strides in medication all we can do is hope.
The whole key with any type of seizures is control but each child is different in how their body metabolises the medications, how their bodies systems handles the medications. So what may work in certain doses in 4 children might not work on say my child. Any control is better than watching your child have seizures. So we have gotten control over 2 types of seizures we just have to see what combination of meds will lessen the effects the others he is having . Do I think my son will ever be seizure free? I don't think so. We did have a time where we had almost 2 weeks of no seizures but that was before the LGS started to come out in force. IT was a nice time but at the same time we were watching and waiting for the bubble to burst and when it did we had a m...... f.....of seizures. At times I wondered if I was doing the right thing basically shoving meds into him. Our Finnian will more than likely have the mind of a 12-18 mth old but the new meds being approved we still have time for hope.

Lennox-Gastaut Syndrome

For anyone with a child,brother,sister, family member or you know of some one with this horrible form of epilepsy there is a new web site.
www.LivingwithLGS.com
I will also add it to the side bar.
Thanks Jackie for sending it to me.

A little on LGS -: it is known to be a type of epilepsy with many different types of seizures.Its associated with mental impairment. The seizures are hard to control even with seizure medications.

Our Finnian has been diagnosed with LGS and he takes many medications. We are not seizure free but since the start of Banzel and the slow wean in Keppra we have noticed an improvment. For now this seems to be the right combination but for how long we don't know.

Still not himself

He is still not back to his normal self. Its funny because he is on antibotics and that usually gets him back to being his normal funny self. May be its not the right antibotic I don't know. He has had a few seizures not the normal ones we would expect but the crying spells while asleep. They start quickly and run for about 1-2 minutes and then it stops. the funny thing is he is only having them during the day while asleep. He is also back on all breathing treatments well we don't want anything to settle in his chest.
He had a great day at school on Thursday but Friday was a bit like Wednesday a bummer. On Friday he also needed to be suctioned a good bit. There is all kinds of coloured snot coming out of his nose which is good it means that his sinuses are finally draining. It only took the second round of antibiotics to do that.
Today is another day of "poor Finnian" he is also sleeping a lot. He had a seizure and went straight back to sleep well I guess he never really woke up. He just started to cry again but at least this time its a normal cry. He wants to be rolled again I guess. That's how we know he is sick because he doesn't have the strength to roll over. I guess he might not be going to school tomorrow. I just might have to reschedule his appointment with the school board. They have to do their testing to see what would be the best school placement for him. I am going to push for the school in my neighbourhood and put priority on therapies if they can give him vision once or twice a week that would be an added bonus. Will let you know how that appointment goes.

Memories

You know it was 5 years ago today actually that we saw the neuro surgeon for the first time. In a way it seems like yesterday. We sat across the table from this doctor and we were discussing the possibility that our unborn child might need surgery right after birth. Thankfully he didn't. We went down through all the possibilities of how he might be affected from his in-utero stroke. Really the good, the bad and the ugly of the effects that the stroke might have on him. The gut punching question that the doctor put us " Do you want to put a DNR in place?" I guess the look on our faces made him realize that we hadn't though about that. Who would think about a DNR when you are about to give birth. Yeah we knew our child would have issues but we never thought that he might not live through the birth. We told him we couldn't make that decision right now but we would think about it. You know even when I was about to deliver him I still really hadn't made my mind up. But you know its still in the back of my mind even today that at some point we might have to make that decision and it won't be an easy one to make.

Eye check up

Well today we had Finnian's ERG test done. Its a test he has to have done to check his retinas as he is on the drug Sabril(Vigabatrin). So the results we got from the doctor were his right eye which is also his smaller eye his cones have a slower uptake but his rods were good. In his left eye there were better results on both the cones and the rods. He had a good reaction with the cones but a great reaction with his rods. This does make sense as we have always found that Finnian is more visually aware at night and also in low light.
What does it mean in terms of the keeping him on the drug? We will just have to wait for the full report.The doctor wants to go over his other results and have a chat with his regular eye doc.
What people have to keep in mind is that our Finnian has been on Sabril since Dec. 2005 and the currrent dose he is on he has been on it for about 2.5 years. Some may question our decision to use a drug that has known side effects of damaging the retinas but when you watch your child have seizures that can go on for 20 + minutes you know you have to make decisions. For us being that Finnian has cortical visual impairment what it means is the part of the brain that proccess what we see is damaged and it is a hot point for seizures it was a no brainer. We had to stop the seizures.
Now hopefully he is at the age where he will out grow the infantile spasms that usually happens around the time the child is 5 years old which our lad will soon be. We might be able to take him off the Sabril but to be honest its not something I am looking forward to.

Well the results are???

We just have to wait and see if our Finnian has strep. They sent the culture out rather than do the quick strep test. But due to the nasty scalding red throat that he has they started him on amoxicillin just incase. So if not strep he definalty has tonsilitis so when April rolls around and they suck thoes bad boys out the better.
Got Eoghans results from his gloucose tolerance test he is normal. Well at least now I can relax and not worry about diabetis. Its bad enough he has the EE and we have to watch everything that has his high food allergy contents in them can you imagine the mess Iwould be in if I had to be watching every carb and sugar he put in his mouth too.
Like I said to the doctor today its bad enough that I have to be shoving all kinds of crap into Finnian to stop his bloody seizures and then watching every bit of food that Eoghan puts in to his mouth Thank God for now I don't have to worry about keeping a blood sugar log.

Our Finnian has to go tomorrow to get his eyes dilated and his retinas checked out because he is on the Sabril. I hope that will go good being that he is under the weather.

Saturday and Sunday

Well Saturday started out really good sorry being a bit sarcastic in saying that. I should say the day started out with Finnian puking and I guess the day went downhill from there. I was feeling a bit crappy too. But we chugged on through the day. Poor Finny he was miserable but at the same time not too crappy. I guess all we both needed was a good nights sleep. I went to bed at about 9 pm which is very early for me. I am usually up until the wee hours. But I got up this morning and I felt great but now I fel like my leaba is calling me.
Today we went to see Dee and Rick's house and the whole lot of us went. Finnian got to hang out on Dee's couch. Eoghan and Maura were looking all over for the cats. They found Mikey well you couldn't miss the lump under the covers on the bed but Dakota she wasn't to be seen. Well at least I didn't see her. Finnian was in a bit of a bother so the one way to keep him happy is to rock him. Now he isn't small or light he isn't too bad to pick him up he only weighs 33lbs but his legs seem to go on forever he really is a string bean. Well you see the was a bit miserable because he was having a problem peeing. Of course I packed everything but his cath kit but at the same time he was still in his window of being left to see if he could go on his own. Thankfully he did go when we came home now we just have to watch out for seizures. His peeing problems and seizures seem to go hand in hand. He also has a bit of a runny nose and a bit of a cough so I guess the puking yeasterday morning was just the start of his cold . His tummy is a bit upset so I guess we will just have to increase his prevacid to get him over this ..
I am also getting better at putting in his new contact lenses and for Christmas he got a new mobile for his bed the problem we had was attaching it on to his bed. Of course Santa Clause wasn't thinking when he left it for Finnian but Mammy figured out a way to hook it on to his bed. You know he can see it the poor lad nearly gave himself whiplash watching the thing go around and that was before I put in his eyes (contact lenses).
Now I must go and give Finnian his nightly dose of meds and lets see if I can get his contacts out in one go that would be sweet.

Happy New Year

Wishing everyone a Happy, Healthy and safe New Year