Happy Thanksgiving Everyone

Happy Thanksgiving to everyone.
Well we had dinner at Michael's this year and what a feast.
The only news on our homefront is our small lad is going in to the hospital again. At least we have a date he is supposed to be going in on the 16th of December and we know he will be in for hopefully a week. We are going to try the Keto diet on him. You are all probably saying she is putting him on a diet but this is a special diet to hopefully control his seizures. The thing is his meds are not working and they won't do the surgery so the other options opened to us is try more meds or since he has the feeding tube we were given the green light to go ahead with the Keto diet.
The diet is something like the Aktins diet in which we make our body burn fat instead of sugars. The Keto diet follows the same pattern.3:1 ratio with the fats being the 3 and protein and carbs being the 1.
THe hopwful out come is Finnian will fall in to A: the diet works and we can wean him off his meds. B: The diet helps and he only needs to be on one or two at low doses to have seizure control or C: The diet doesn't work and we have to change his meds. We are hoping he will be in either A or B groups. IF we are in the C group well at least we tried.
Hopefully I will be taking our Christmas pics this week and I have 98% of my shopping done. So I am on top of things for a change.
Bye Ger and the Cat's in the Bronx

Trick or treat

Well the kids had fun doing Trick or treat. Maura made out like a bandit her bag was sooo heavy she couldn't carry it. Eoghan didn't do to bad and Finnian got candy too.I have to figure out how to post more pics I did it before but now they just see to go I don't know where.
Oh well
Bye

Doctor's appointment

Well Finnian went to the pulmonary Doctor on tuesday and we came home an at 4p.m. we had 2 new peices of equipment oxygen and a Bi Pap. THe oxygen is to be used when he needs it and the bi pap is the be used when he is sleeping. What it is used for is sleep apena which of cource Finnian has. It also helps filter the carbon doixide out of the body which in turn helps us to take bigger breaths and pump more oxygen around in our system. But over all he is doing good he have to go back in 3mths of if he get sick we have to go back to see him.

Neuro appointment

Well the news we got today was so so. The information they got back from his stay in the hospital in September is he not a canadiate for the surgery they first had in mind but he is still a canadiate for surgery. The big seizures he has been having are comming from a different part of the brain well they are comming from the left side and they will keep affecting his swallowing ability if they are not controlled. The rest of his seizures are comming from the right side of his brain they too will cause more damage if not controlled. We just have to really wait for the MRI/MRA on friday Nov. 2. But at the same time they are considering to do a muscel biopsy to see if they can rule out any genetic disorders.
Oh well we just have to keep trying all the seizure med until they get answers. Over all he is doing really good he got over his surgery still a little tender but it is soooo much easier to get food in to him well really to get liquids in him. Now I don't have to feel like I am forcing him to drink I can just bypass his mouth and his belly is full.
Bye
The Cats in the Bronx

Maura and Finnian. See his belly no feeding tube

My boys Eoghan and Finnian

G-Tube surgery is over

Well Finnian got a call to come in earlier for his surgery on monday Oct.22. I brought him in to the OR and got to stay with him while they put in his I.V. and they gave him laughing gas that was funny as he laughed himself to sleep. Then not 20 mins later there was his surgen and GI doc telling me that it was all over and that everything went very well and his tummy looked good and they had put in a micro button. The bad news was that we would have to stay over night. Well we stayed in for two nights and got to come home on Wednesday with a whole load of supplies and a a little feeding pump.
THe out come is for now he will still eat by mouth anything he will eat and drink but we have to give him an over night feed through the pump. They want him to gain 3 to 5 pounds over the next few months. When his seizures are bad now I won't have to panic because he cannot eat or take his meds I will be able to feed him and give him his meds through the pump.
The next appointment he has is on monday with his seizure doc we will just have to wait and see what she has to say.
Bye

October News

Well the great news is Finnian has perfect hearing. He passed the hearing test thank goodness.
Now the next big one is on Wednesday October 17th the is having his surgery to put in a feeding tube. We hope this goes well and he will come home on the same day.
We are still waiting to have one other test done to see if he can have the epilepsy surgery done. Once we get his MRI/MRA done then his case will be off to the surgical team.

Happy Birthday to all who have birthdays this month.

Will update after the surgery

Bye The Cats in the Bronx

October a busy month for us

Well now that October is here we have a very busy month ahead of us. First of all I have to do my civic duty and go to jury duty..
Then Finnian takes over the month First is his hearing test on Oct 5th. Then his G-tube surgery.Then he has to see his eye doc, his nuerolgist,his pulmonoglist and also he is supposed to get an MRI done as well.
Thankfully we have been able to get a nurse for Finnian due to his condition so now I don't have to have watch him 24/7. The nurse comes in for 8 hours a day 5 days a week. It was very hard to let someone else take over looking after him but it is getting easier. Finally I have time to do the things I have put off, which is alot.
Will keep you all posted on all of the appointments
Ger and the Cats in the Bronx

New update

Well we went in to the hospital on Monday sept 10th for our usual 24-48 hour stay but we didn't come home until thursday sept 13th. We heard the usual electrical activity but not seizures but I had them check the readings before the physical seizures and Hello yes he is having seizures. I had spoken to his GI doc before he went in and he decided to do the PH test if the neuro agreed to keep him in. All I can say is "I love Dr,K". Thanks to him Finnian was still in the hospital when he had his big seizure. Now I mean the ones he has being, having the ones where he loses his ability to swallow. They now know that he was in a seizure for almost 20 mins before he showed any physical signs of having one. Now as soon as I see him in this type of sseizure I have to give him diastat right away and hook him up on to his pulse ox, start suctioning and moniter his breathing.If he doesn't come out of it I have to give him the second diastat and do the same as above and if that doesn't work I have to call 911. Hameatology thought of a few tests but are leaving it up to his neuro if they want to run them. He aslo had his echocardigram done I haven't gotten the full report but was told everything looks good. The next big thing comming up for Finny is his feeding tube. Oh also we are changing his meds they are taking him off Trileptal and putting him on lamictal. this is a hard med with side effects but they all do but if it works with no side effects I will be happy.
Ger and the Cats in the Bronx

The summer is almost over

Wow, its almost time for the kiddies to go back to school. Eoghan is going in to second gradeand Maura is starting pre-k. She will be only going for 2.5 hours but may be for a full day if they get to have the all day program.
Now the update on our little man. Well he is going back in to the hospital for more tests on Monday the 10th of sept. He will have another EEG and also a consulation with a hematoligst (blood Doc) and blood work also he is to have a echocardiogram ( a detailed scan of his heart).
The reasons for these additional tests is the resluts from his PET scan and previous MRI's shows he had an embolic event before his stroke. THese test have to be done now before they will consider him for the epilepsy surgery. He is also getting a feeding tube put in his tummy that surgery is scheduled for Oct.17th. We hope this will prevent him from losing weight every time he gets sick also when his seizures are bad he has a problem swallowing. He also got two new peices of equipment a suctioning machien and a pulse oximeter. The suctioning gizmo will hopefully help cut our trips to the doc after the bad seizures and the pulse ox will help determin how bad is oxygen levels are when he sleeps. They know he has sleep apena but this will determin if he needs oxygen or the funky sleeping mask for the apena. Will keep updating as I get any information.
Ger and the Cat's in the Bronx

Wow where has the time gone?

It's hard to believe July is over. Alot has been going on poor Finnian has been in the hospital again and had a test done called a PET scan. It basically shows the area in the brain that is shooting off seizures. Well we got the results and now they are putting him forward for brain surgery. We now have to wait and see what the surgical team has to say about his case. I got his eye doc too read the report and to give us his honest thought on the surgery. He agreed with the surgery. They are talking about removing part of his right occiptial lobe. Yes I know its a tough choice to make but it will hopefully eliminate some of his seizures and the other ones should be controlled by meds.
His meds are being changed yet again we had maxed him out on the 3 he is on but when we maxed out the zonegrane he hardly ate anything and the weight we had fought to put on was comming off fast.
We go on Aug 6th to see the GI doc it has been suggested for Finnian to get a feeding tube due to his low weight and he has a problem with drinking liquids.
Oh well we will just have to wait and see.
Bye Ger, Finnian and the Cats in the Bronx

May update

Hi All,
I am very late in updating this month. I have been busy as I have been setting up Finnian's page sorry its not a blog page its from www.carepages.org/FinnianCataldo I am sorry you do have to sign in and make an accouts all it takes is a screen name and a password. I am sorry I e-mailed it to some and I know you have received a lot of updates please bear with me. I want people to know Finnian's story. Well like the old saying " cursioty killed the cat but information brought him back". It can be shared with anyone friends,family etc.
The other 2 are going good school is comming to an end for Eoghan. He did a school state test and scored 77% in the national average. Way to go Eoghan!
That it for now
Bye The Cat's in the Bronx

I will be setting up a blog page just for Finnian I just have to get all my stuff together. You will be able to see everything about him diagnoses,meds treatments etc
hope to have it up and running in the next 2 weeks or so

Happy Easter

Hi everyone,

Just wanted to say

Happy Easter Everyone

From The Cat's in the Bronx

Back on again

Hi All,
I messed up the last blog and then couldn't access it but here we are again will get back on the band wagon again so check back
Geraldine