I know , I know I have been slacking

The kids started back at school, Eoghan is in 7th grade and Maurs is in 4th grade and Finnian is supposed to be in 2nd grade but again this year we fought to keep him at home and a teacher comes in to the house 5 hours a week. Finnian even showed the teacher why its safer to be in the home program oh yes did our boy have a doozy of a seizure I think it was the first full week of classes. It started out as a myoclonic and just kept going. We used his VNS first nothing happened so then we gave him Klonopin and that didn't stop it so we ended up give him diastat and waited. I had even gotten the "go bag" as I thought it would end up with a trip to the ER but we were lucky again and got to stay at home. Finnian had his hamstrings released and also his achilles tendons released so now boy wonder has blue casts and knee braces on.

He also got his new wheelchair. Oh wow did that take a long time but he finally has it. I have added some bling to the head rest and the chest harness. Yup some sugar skulls fabric. Making more covers so we can change it up a little. His chair is a cool "toxic green".

Oh yeah I fried the computer again. No I didn't spill anything on it the hard drive decided it didn't like me anymore and just quit on my. Thankfully my little sister and her other half came to the rescue again ( remember last year the power switch went in the computer) well they figured out it was my hard drive and got a new one and put it in for me. Rick is the best he was able to get nearly all my info off the old hard drive. I must invest in external back up so if and when something happens I will be able to get all my data back easy. October was a pretty blank month for appointments but slowly they have started to pile up on the calendar. Eoghan is having his scope with biopsy done to check out his Eosinophilic disorder out the end of the month and of course boy wonder Finnian has follow up appointments and he is also getting his ERG done on his eyes. Oh well thats it for now

August 2nd 2012

Wow its been awhile since I updated here. Well Eoghan is gone to Ireland with Nanny and will be back in 8 days. The time for his holiday is going fast. Maura is in the second swim class and I just might sign her up for the next round. Finnian is in the hospital again. He was having an increase in an "episode" so they brought him in to check it out and true to Finnian's nature he hasn't had one since going in. They were scary in a way as his heart rate would go up high really fast and sometimes come down as soon as the "episode" was over but sometimes it stays high for time. It needs to be figured out as we don't want to be harming his heart. He did have an episode that showed a seizure when his O2 dropped into the 60's we have been chasing that one for almost 4 years and that is one of the reasons we cannot leave home with out having a tank of O2 with us. now we just have to figure out how to treat it do we just do what we have been doing or do we play around with his meds? Joe had to take time off of work while Finnian is in the hospital. He either stays with him in the hospital or else he stays with Maura while I am down with Finnian. Normally my Mammy would take her and Eoghan but Nanny and Eoghan are not around for the next 8 days. Thankfully he has vacation and sick time at work and under the FMLA (Family Medical Leave Act)he can take the time off and get paid by using his vacation or sick time. Next thing we will be getting the kids ready to go back to school. Eoghan is doing good with his 2 books that he had to read over the summer. He has one finished and the overviews written on each chapter and he is working on the second book. Maura had her book read a few days after she go it. I guess she is more like Deirdre and myself I know we would prefer to read over doing laundry or house cleaning. Finnian will be having surgery on his legs sometime in late September early October. I know some question him having surgery but everything and anything we do for him is to help him live comfortably and as pain free as possible. He is on enough medications with out us having to add pain meds long term for something that could have been fixed with a surgery and some casting. Our goal is to get him to be able to bear weight on his legs so that it will be easier over all to move him and you know never say never but maybe we might be able to get him to shuffle along with a gait trainer (walker) once his ankles and hamstrings are taken care of.

Choices

I have written posts and not published them a lot going on right now and of course I am the one that is wrong. Yeah right !!! Let's clear up something I have 3 children not 2. Each of my children deserve the same treatment and respect. My oldest is the first boy child of the next generation to carry on the Cataldo family name. My daughter was the first girl Cataldo born in like 60 years but you know if she gets married she might probably change her name to that of her spouse and she won't be Cataldo anymore. My youngest was the second boy child of the next generation of Cataldo's. I don't know, well I really have lost count of how many times I have been told "you had the perfect gentleman's family a boy and a girl". I love how they say "had". Oh yes that's right I chose to have Finnian. Well a hand higher than this earth decided that we needed to be this child's parents. Its not the life we would chose its the life that was chosen for us. Do you think I like that I have to pump him full of medications to give him his normal? Do you think I like that I have to depend on MY FAMILY and MY FRIENDS to be there for my other children? Do you think I love going to like 20 different doctors? Do you think I like that the security guards at the hospital knows my child by his first name? Do you think I like fighting with my insurance to get things covered? Do you think I like that I have to fight for his right to have an Education in the proper setting for his needs? I do it all because he is an innocent child, my child, my son. They say that acceptance is the greatest disability than a disability its self and I do believe that is true. They always say "don't judge a book by its cover" and its true. I cannot tell you or teach you on how not to judge or how to accept Finnian you have to figure it out on your own. But you will not ignore him and pretend he is not there. He is very much a part of our lives and yes we do have a different life to others but he is who he is supposed to be and we cannot change that. He is not a burden he is like my other 2 children a gift but a gift that came packaged a little differently. We have come to a part in our lives were people have to chose but you will not divide my family. So the ball is in your court its your choice are you going to follow us on our journey and accept our "normal" or are you going to walk the straight path and walk away from my 3 children? That's all I am going to say now its your choice

We are still here

You know its coming to the end of the school year so the kids are cramming for their tests. Thankfully my Mammy helps Eoghan out she looks forward to him coming everyday after school even though sometimes she is ready to pull her hair out. But you know she had plenty of practice with me so Eoghan is a breeze. The skit is I caused my mothers gray hair and now Eoghan is making it white. Yup my mother has drilled fractions in to Eoghan I will confess I had the same problem. Only another full week of school and then we go to the half days and then the last day they are out by 10am. We have gotten the ball rolling on Finnian's IEP. Due to Finnian's medical condition they are leaning towards homeschooling with related services at home. We had this for the last year and over all Finnian has improved but you know Finny fine 1 minute and the next not doing good. He is finally putting the weight back on that he lost when he had the kidney stones. Everyone is saying he is getting heavy and he is starting to put meat back on his skinny legs. He was supposed to have his Botox done Tuesday but our lift was out for over a week and I was not about to bounce him up 4 flights of stairs after getting it done so we changed it to the 19th. Fingers crossed the lift will stay working. Well any pounds I lost going up and down the stairs went back on this morning. A neighbour was out side with his friends this morning and they had a to die for cake. It was really really really yummy so instead of having a bagel I had cake they also had sparkling wine not that I touch the stuff but it was fun at 9am this morning.So happy 40th Birthday Juan. Hope you have a nice birthday weekend away. Next week is registeration for the free swimming lessons so will have to get Miss Maurs signed up hopefully for them. Eoghan maybe going to Ireland but if he has to go to summer school that will change. We don't have plans yet for the summer to go anywhere but you never know

My summer cabana

Long legs

Dirty piggies

Just look at the dirt

Finnian and Daddy

Okay lets try again

http://www.facebook.com/FCMichigan?v=app_248518978578050&app_data=entry_id%3D5167779 You might have to copy and paste the link

Help Finnian get a trike

I hope this works but click on the link, then click like then go to Finnian's picture and click in the box that says "vote". We are trying to get him a trike. There is no way we can afford to buy a special needs trike for him because soup to nuts its like $1000. So please take a minute and vote for our Finnian. Thanks

Update

Well he went in the hospital last Monday and got all hooked up and his head all wrapped up. He was in until Wednesday and the results are he is having spikes from his left occipital lobe and it shows us the reason why his vision has been going again.You see Finnian is blind on the left side of both eyes from the stroke he had in-utero. The other area he is having spikes is in the lower left posterior lobe and that is the area that controls movement. The good thing is what looks like myoclonic seizures are not seizures but his movement disorder. We have room to go up on the medication he takes for his movement so I guess we will be upping that one. They took him down on his Keto diet to a 3:1 ratio and reduced his protein. So now we have to watch him for seizures because of the change. Saturday was not a great day. It was hard to watch him having the myoclonic jerks and they were lasting for up to 30mins. He was getting flustered as his hands kept jerking. He had a few rattles of these the shortest cluster lasting 10mins and the longest cluster lasting 30 mins. Before we would give him a rescue med for his "seizures" but since they are not seizures we have to ride the storm. Will be putting in a call to his movement disorder Doc on Monday.

I don't know

You know Face book has changed to the new time line and now blogger has changed too. I don't like so much change at once well it just takes me time to figure things out.What I should have done was change both blogs at the same time so I would remember what I did to change them to the new format. Of course I didn't think of that. I am just sleep deprived

Latest news Our Finnian has kidney stones. Yup so now nearly every time he pees he cries and to be honest I cannot blame him with the amount of teeny tiny stones he is putting out.We are going later on today for an ultrasound and blood work. So we will see that the scan says we may have to go back to the urologist sooner than August. The poor lad any one that has had kidney stones will tell you how horrible the pain is so no wonder he was trying his best to throw up last week. I cannot be blamed for this fault as his Dad has had kidney stones and his grandfather on his Dad's side has had them may times and so have others on his Dad's side. So sorry Finny but that is something that comes from your Daddy's side. Yes he is on the Keto diet for his seizures and that can cause kidney stones but in all the years he has been on it its the first time it has happened. He did have a bout of kidney stones when he was on Topamax when he was a baby but let me tell you he didn't put out all that much then.I think I only saw them in 2 nappies. Today is day 4 and he is still putting out stones. Must hook him up to some water so we can flush the buggers out.

Finally an update

March was a crappy month for Finnian. His seizures were weird and his sleep schedule was way off. We were saying it was the weather as it got hot very fast and Finnian cannot handle temp changes very well. Had an appointment with the neuro and told what was going on with him they were wondering why we didn't call and let them know. To be honest Finnian has cycles of increased seizures and some times just the change in the weather will set off a cycle. So instead of freaking out we just ride the storm and wait and see if we can control these cycles with our rescue meds at home. Don't worry if I wasn't comfortable or I thought they were way worse than normal I would have him in the hospital. He is now over the hump he was in and will be going in for a few days in May to get his brain waves read. Its the first time since he got his VNS so I hope there is a change in his over all background. Went to see the endo doc as his TSH level had come back high. She is a really nice doc and checked out a few other things with him as well. Guess what ? Everything came back NORMAL. Even she was surprised there was nothing even on the low end of normal considering all the medications he takes. We just have to follow up with her again in 6mths for another round of blood work. He was also at the Movement Disorder doc for a follow up. No changes on his meds but she will see maybe if he has continued peeing issues she may add another med. you know the Flomax is doing its job but we do see some holding issues when his seizures are a bit whacky. It was cool he did have a small seizure while he was in her office which is always great when other doc's see them. She is talking about touching base with the other doc's and see if they can figure him out. His seizures have picked up the last 2 days again but he is getting new back teeth. He is also trying to throw up but because he has the nissen he cannot so we watch him going through the motions and vent him. We have also discovered if we swipe his VNS with the magnet he will stop. So is it seizures that is causing him to try and throw up or is it just a bug? We have been down this road before and have not gotten any answers so we will just go with the flow and use what works. Both boys were at the GI and Eoghan has to have another scope with biopsy done to check his EE out. Otherwise they go back in 6mths for a follow up. Maurs went back to see Dr.C and she is doing good so we just have to keep up what we are doing and go back in 4 mths. The kids got their pictures taken and they came out really nice will up load them when I go over to my Mammys and get my printer/scanner. Must take Finnian and get some pro shots of him again since he has a nice haircut.

Miss Emily

Prayers, Hugs and Love for the Evans Family.

Belated Birthday wishes to my little girl

Happy 9th Birthday Maura

Happy Saint Patrick's Day

Happy Saint Patrick's Day everyone.

Going to parade tomorrow will take pics and post

Happy Birthday in Heaven Dad

Hope the fishing is good up there. Happy Birthday Dad

Happy belated Birthday Aidan

Sorry Aidan I couldn't find a picture of you on your own so here you are with the rest of the March Birthday crew Eoghan and Maurs.
Happy Birthday

Happy Birthday Eoghan

Happy 12th Birthday Eoghan

Finally caught up to him

Since like the second week of January there has been some one of us sick with a horrible cold. Well it seemed that our little man had escaped it but alas it has caught up with him. He started out with a yucky eye no its not pink eye. I had him out on Monday morning and forgot to put his shades on so figured he got a bit of a cold in his eye and have been using the teabag to clean it off. Then he started with the stuffed up nose and when he would sneeze a load of gunk would come out. Now he has a snotty nose and has to be suctioned otherwise he is gagging. There last night he started with the cough and just looks miserable. Will have to keep an eye on him and may be take him to the doc to get checked out.
Had him at the cardiologist the other day he goes once a year for a check up. Everything looks good and they put him on a 24 hour monitor and I dropped it back to them yesterday so we will have to wait and see what the report will be on it.

Oh little man

Don't really know whats going on with our little man at night time. His alarm is beeping, beeping off and on while he is sleeping. The other night first it was his heart rate dropping down in to the low 70's so would change his position and it would come up again.That went on for a while I even had him sitting straight up just to keep his numbers up. Then his O2 started to drop so in the end had to put him on some oxygen well 2.5 liters just to keep him in the 90's. During the day he was pretty good had a few dips when he was having his nap.
Last night again his heart rate dropped in to the 70's. This goes on for a few hours at a time. Watch we are going to the cardiologist the end of the month and when he will have the halter monitor on it won't happen. I even put the finger pulse ox on him to make sure it just wasn't his monitor that was giving a false reading but the numbers were basically the same. So we are not crazy.
Sometimes we will see this pattern right before the shit hits the wall with seizures or he will get SICK. Oh little man I hope something is not cooking.
I have been trying to stay away as much as possible as I have a cold and a horrible cough. Maurs is in the same boat her cough is wicked. I keep telling her to stay away too.

Good Follow up appointment

We went back to the rehab doc for a follow up after the botox shots. She was very impressed with the job it had done on his ankles, left arm and hand and on his right hamstring. His left hamstring will need the release surgery but by doing the botox its not something we have to have done right away we can wait for another while. We scheduled another appointment to have another round of botox done in June. Our hopes for the next round is to keep what he has gained and maybe even to get a bit more of a release out of his left hamstring. The reason his left side is much tighter is because of the stroke he had before he was born. You know we never thought we would ever see him use his left hand but since the shots his hand is opened and he is moving his fingers independently and his thumb is not constantly in against the palm of his hand. Honestly when we decided to try the botox we were hoping to just put off the tendon release surgery on his hamstrings and ankles but never did we think he would only need 1 surgery instead of basically 4 surgeries.
We are still going to be going to the movement disorder doc for his dystonia even though botox is a treatment for dystonia we are really using the botox for his CP spasticity. He is on a medication for his dystonia and that is helping that issue.
Just waiting to hear when his new cool wheelchair will be in we really don't expect to hear anything until the end of April hopefully we will have enough movement in his legs that they will justify his need for a gait trainer other wise we will just have to get another stander as he is growing out of the one he has.
Wish I was able to afford to get a soup to nuts gait trainer for him. Oh well I am thankful everything he has been able to get but would love to help him gain more independence with a gait trainer.

Sad

You know we have come in contact with some really wonderful families since our Finnian was born. We have friends all over the USA and even all over the world. They have become our special family. Some of these wonderful people we will never meet in person but have become a huge part of our daily lives. You know you boot up the computer and check out to see how things are going on with them on their blogs or through facebook. But then there are times you start reading the up dates and you feel like the rug got pulled out from under you and you just stare at the computer screen and you just cannot believe what you are reading. You know in a few short months that has happened.
In January I was checking in on the Littlest H as he was starting a new treatment for his mito disorder. His Mamma wrote "H started new treatment" and the same evening she got word that her husband had passed away. My heart goes out to Debbie and her 3 H's on their loss.
Another family the King family from Tasmania, Australia in October their beloved Noah passed away at the age of 10 years old.Last week the King family suffered another loss. Aaron King (Noah's dad) passed away at the age of 39 from a heart attack. I cannot imagine what Lisa and the 3 boys are going through with the loss of a husband and dad.

Happy 7th Birthday Finnian

Wow love I cannot believe you are 7 years old today it just seems like yesterday I popped you out and held my breath hoping you would cry. You did cry and even though your normal life is different from everyone else I am so proud of you. You have had your up's and down's and there was a time or two or three I just didn't know if you had any fight left in you but you didn't give up

So my little Warrior Happy Birthday

Love Mammy

Why?

You know its the same thing we get asked each and every time we put Finnian forward for some type of surgery or treatment "WHY?". The answer is just like you he is entitled to the best quality of life that we can give him. Everything we have done, every surgery, every treatment even every pill we shove in to him is to help him have his "normal" life.
Now we are going to try botox treatments to see if we can get his hamstrings loosened up and hopefully avoid surgery. It might work and then again it might not and he will end up having surgery anyways but at least we tried. Am I nervous, scared? Hell yeah I am. It means he has to have anesthesia in order to get the botox and for anyone that is a nerve racking deal.
So instead of asking "WHY?" why don't you say " I hope he will get the best out of the treatment".