Friday, February 26, 2010

Snow Day

Well the call had come from the school at around 10 p.m. on Thursday saying that there would not be school on Friday. So the kids didn't find out until the morning that there wasn't any school. So by 7:30 am on Friday morning they wanted to go out sledding. They did go out but it was much later. They were out for about 2 hours and couldn't wait to get back so they could have hot chocolate. Finnian stayed at home with me as we don't need him to get really sick with his surgery coming up on Tuesday.
Maura had a play date with Amelia and Owen. But when she came back and we were told she threw up but it was ok as she had made it to the bathroom. She didn't have a temperature and felt fine and was hopping around. Next thing she runs to the bathroom and she starts again. So she got told to stay away from Finnian. I hope its not something that everyone will get.
Spoke to the nurse from anesthesia and we went over everything for Finnian. IT looks like he might be getting an epidural for his surgery. The say its better for pain management afterwards so we will see on Tuesday if that is the route they will take with him.
It looks like the snow is finally stopping and now we will have to dig out the van. That is something I don't mind doing.

Thursday, February 25, 2010

Counting down the days

Well today we went and got Finnian's medical clearence for his hip surgery. He has even put on 2 lbs. I guess the probiotics must be good for him. It was funny we get of the bus( yes I do take Finnian on public transportation) and we go to CVS and I meet one of the moms from school there. We are chatting and next thing Finnian does one of his tell tale coughs and next thing all I hear "Geraldine there is milk coming out the baby's nose" and as I look there a whole load came flying out his nose and mouth. Thankfully the rain plastic was over him and it didn't project to far. So I just open up my backpack and pull out some wipes and start cleaning him off. It doesn't phase me as it is something that he does.
So we go home and I was nearly leg less in the Bronx. It was very slushy,slippery, icy and of course I almost land on my arse. Of course my son thinks its funny when Mammy lets out a squeal and *?**!!!!!!. So when we go out to get the other 2 from school I put him in the jogger and I put the wrist strap on well just incase we have a repeat preformance the last thing I need is for him to roll away.
The rest of the day was fine we just watched the snow,sleet and rain and at about 3:30 it turned to snw and its still coming down. E and M are waiting for the call from the school to say that there is "No School" but they will just have to wait until tomorrow.

The up coming storm

We alerady got the call that there will be early dissmissal from school because of the weather that is promised. Finnian is going to play hookey as I have to get the medical clearence for his surgery on Tuesday. We waited because with Finny you just never know.
We started giving him probiotics and what a huge difference they have made. So it looks like we can give the mirlax a break. As he now does not need that to help him poop. We even got one that is dairy and gluten free is called Culturelle. Since we have started it he has not gotten any bugs from the other 2. So it looks like it is boosting his immune system.
So now we wait and see how much snow this storm is going to dump on us

Wednesday, February 24, 2010

Rain, rain go away

As a child growing up we went outside to play even in the rain. We would just put our jackets and our wellington boots on and have a blast jumping in puddles. The rain didn't stop us from having fun. Years later while being a letter carrier the rain didn't bother me I would just walk through the puddles with my rain jacket and white plastic safari hat on trying to keep the mail dry. I have always love walking in the rain.
Flash forward to now even though I do like the rain I hate what the rain does to Finnian. We don't get the huge amounts of visiable seizures but we know something is working in over drive. He will puke and sleep and whine and cry and just basically gets flustered. This morning e was in great form as his body has adjusted to the rain. Now I wonder whats going to happen if we get all the snow we are promised? Oh well I will just have to wait and see.

Monday, February 22, 2010

The changes in Our Finnian

Back in November I kinda of disagreed with his doctor over the medications. You know I have followed ever increase and decrease to the tee. Never questioned why med W over med H. I never wanted to go to the benzo route but I did agree to put him on Klonopin to tie him over while weaning lamictal. Then in November while in the hospital they wanted to change his benzo but that was hard as it was never a drug I wanted him on in the first place.
We had seen changes in him once we put him on Banzel. Banzel has gotten mixed reviews but with Finny I could see positive changes.But it seemed like it wasn't working to the fullest. Since he seemed to basically eat Keppra like candy and I never saw positive changes in any increase as far as seizure control. I wanted to wean Keppra. It wasn't something his doctor was in favour of but it was something I wanted to try. So the agreement was we try my way and if it didn't work I would go the other benzo route.So we started the wean slow.
The changes in him are unbelievable he is rolling from his back to his tummy and he is even rolling to the right. He hasn't done that in, I cannot remember its been along time. He is pushing up on his hands, well I should say his right hand and his left elbow. Even if you put him on the floor he scootches and wiggles all over the place. His eyes seem to be more focused and it looks like he can see. He can be at times a bold little boy and he seems to know what he is doing. He is trying so hard to speak and there are so many more sounds coming out of his mouth.
For now it seems we have stumbled on the right combo of drugs for him. How long this will be the right one, only time will tell.
But I will take every day of positive change.

The results are in

Well nothing showed on the genetic tests he had done. Now its like where do we go from here? Do we push for more testing and maybe come up with the same results or just accept that Finnian is Finnian. You know I have always said having a name for whats wrong with him is not going to change him or how we look after him. First and foremost he is our son and nothing is going to change that he is just the one that has a very long list of symptoms. He is just a big puzzle and no one has been able to put the pieces back together. Of course it would take my son do do something like that.
But just like the meaning of his name the sharer and teacher. He shares all of his symptoms with whom ever wants to read about him and at the same time he is teaching us that we have to be patient that everything doesn't follow a natural curve. Some times we have to take the long way around to finally get at the answer.
But then again that's kids for you

Sunday, February 21, 2010

Waiting for test results

In December Finnian had some blood drawn for genetic testing. Some people wanted to know why we were doing it, why couldn't we just leave the unknown basically unknown. Who knows if anything will show and if something shows up in his genetic work up will it gives us answers or more questions.
At the same time I do have 2 other children and I think for them, they need to know if this is something in their genetic makeup. What if it is something that they could pass on to one of their children? You know years form now I would hate for one of them to say to me "if you had Finnian tested we would know about this".
Even with these tests we might not get any answers but at least I will have known I did do the right thing.
Some did not want me to do testing, and you wonder why not? are there things that they are afraid of that might show up? Look my reason for looking is a) is it a heredity trait?. b) will the answers help in Finnians treatment? Plain and simple I only want what is best for Finnian.
So I put my big girl knickers on they other day and put the call in to see if all of the tests were back. I don't want to just get some and have to wait for more. Its all or nothing so now I am waiting . I am a bit anxious but I cannot be sure if its from waiting for the phone call to say "yes all of the test results are in" or if its the up coming surgery on his hip.
What the hip surgery is , its to put his hip back in to the socket/ The doc will have to form the socket and then put the joint back in to place. Then his femur will have to be broken because it they just fix the hip his leg will look twisted. So they have to basically have to break the leg and turn it the right way. Then they have to break his other leg and cut a peice out of it and pin it back together, the reason they have to break and cut his good leg is they don't want his left leg to be shorter than his right. I was surprised that they are not going to cast him he will have a brace. The surgery will take at least 4 hours and fingers crossed there will not be any complications.
So now we wait for test results and for the surgery.
We spent Saturday in our jammies well I was no about to bring the kids out as Eoghans's temperature had come down but was still hanging out in the 99.3 to 99.6 range. He was told to stay away from Finnian. Well the last thing we need is for him to get sick and his surgery on his hip is just over a week away.
For unknown reasons Eoghan's temp went back up to 102. 3 so he dosed again and so far today he has no temperature at all and he is looking a bit better. Maura was looking for a bit of sympathy and said her throat was scratchy she also got told to stay away from Finnian.
Maura said she will miss Finnian when he is in the hosptial and she wants to know can she visit him. So I told her as long as he is in a regular room she can come and visit.
It always seems to happen that Finnian is always in hospital when its Eoghans birthday. This year it will be the same. Thankfully Eoghan is an easy going child and a new video game or a graphic tee and tickets to the movies will make him happy. Now if it was our Maurs that would be a different story.
Our Finnian is sitting up in his chair on the floor enjoying chewing on his toes. He better do enough of it because in a week he won't be able to do it for about 6 weeks.

Friday, February 19, 2010

Appointments, approvals and a sick kid

Well with Finnian's surgery coming up we had to make an appointment to see the peds to get approval for the hip surgery,.We had to get the neuro to give approval so they are just putting down what to watch out for seizure wise.
The sick kid is not Finnian but his big brother Eoghan. When he came out of school he was quite but Eoghan is often like that. When we got inside I asked him whats the matter and all he said "his head hurt" and he is a bit thirsty. So as soon as we got in the first thing I checked his sugars but thankfully they were in normal ranges. So I just gave him some Calpol and told him to lie down he would feel better. About an hour later he comes out and tells me he feels better but to be honest he looked horrible so I took his temp and it said "101.4" He got told to stay away from Finnian. I took his temp again when he decided to go to bed at 830 and it was 102.3 so he got motrin. Now I just have to keep and eye on him and if he is still running a themp tomorrow I guess it will be of to the doctors office we will be going . I hate the peds office on Saturday its always so crowded and its the last place Finnian needs to be.
Will let you all know what tomorrow will bring

Tuesday, February 16, 2010

Ear infections

Well yesterday he was acting a bit funny so we just put it down to the coming storm. But did I know what it was at 12:15 am this morning when I heard the tell tale cough. Yup that's right he started puking his poor little guts out and then he let it free on the other end. So I clean him up and take him out to the couch his usual perch when he is not feeling good. Then the screaming starts and he keeps pulling on his hair. So I get out the Otho scope and take a peek in his ear. I cannot see anything so I give him some calpol and hope it will keep the pain away because I know its an ear infection.
At about 2:15 am he starts puking again this time all over the couch. At this stage the smell is getting me so I give him a quick shower to rid him of the smell. It was quite a sight to see him wrapped up like a burrito at that hour in the morning on the floor. Thankfully I had put plenty of those blue disposable chuck pads down so the couch was a quick clean up.
This morning when I checked his ear I could see the problem a bloody ear infection.
So my Finnian showes the most unusual symptoms of an ear infection, puking and the runs and then the screaming starts. The only way to keep him happy is in a reclined position and keep moving him. So we started back on the ear drops and this evening when I checked his ear again you could see the junk coming out so at least they are working.
Roll on April so we can get the new set of tubes put in.

Birthdays and Anniversarys

The Birthdays of those that God has called home are sometimes the ones we forget.
So its time for us to remember them.

Happy Birthday in Heaven
Mary (Maureen) Fahy my grandmother 2/12

To my sisters Happy Birthday and Happy Anniversary
Maureen and Rose Cosgrove 2/14/'68.

Thursday, February 11, 2010

Growth

You know today was the first time that Finnian was out sledding. I have always made excuses why not to bring him out. Its too cold, he is not feeling good, what if he has a seizure? how will we put him on the sled?
So today I just said " get your gear on we are going out sledding". Joe usually takes the other 2 out but today I took the 3 out and we had a blast. At first I was going to send Maura and Finnian down together but we only have one of the round sleds and she was not able to manage him so I just laid him on the sled and ran down to the bottom and had Eoghan push him down. He came down squeeling and laughing. Then Eoghan tried to pull him back up the hill but Finnian kept falling off the sled and his wellies kept falling off. He was laughing and he kept signing "more". So we got to send him down again. He wasn't too happy with me when I put him back into the stroller. Well may be its because its a tight squeeze with all of the clothes he has on.
You know I try to treat him as "normal" as possible well with in reason but today he was like any other 5 year old flying downhill on a sled.

Wheee

Getting ready
On the way down

Getting bored

On the way down again

Finnian getting ready for his first solo

Eoghan getting ready to push Finny down hill

Whee here he goes


Coming down head first


Look at that face he had fun
He had a blast and wanted more



Eoghan trying to pull Finny back up the hill


Finny had so much fun


Maura got stuck on the ramp


She got over it but not on the sled


Maurs was having so much fun just sliding down on her belly

Eoghan got major air on the ramp


Crash landing

Here we go again


He made it
Finnian keeps signing "more"


Pretty trees

The snow comes up to the seat on the park benches

Pretty

Eoghan and the giant snow ball

Snow

Well we sure did get a dumping here in the Bronx and the kids love it. School was cancelled yesterday and last night we got word that there was a 2 hour delayed opening for Eoghan and Maura and for Finnian school was going to be closed.
Fast forward to this morning we got the call that schoool for E and M was closed. So now we are getting ready to go out and enjoy some fun in the snow. I wll post some pictures later.

Wednesday, February 10, 2010

What a morning

Well the snow had started during the night and it wasn't too bad so off to the bus stop I went. The bus came and I put in my metro card all that was left on it was 25 cents. So I go to get off the bus because I don't have the fare and the bus driver was very nice and said I could have the trip for free. Get to the dept. of Ed and as I go in I say I have an appointment so they let me go upstairs. I get up stairs and let them know that I was there for a meeting. Next thing a guy comes out and tells me that all of the appointments for today have been rescheduled for another date. Well I didn't get the phone call because I am here. So I asked for a note to state that I showed up. You see you only get one shot to basiclly pleded your childs case for services and they are not going to make any decisions for my Finnian with out me being present.
The I walk across Fordham Road to Motor Vechiels as the van had to be re registered. Unbelievable there was only 2 people on line ahead of me. I think I was about 15 minutes max in there.That never happens sometimes you just love the snow. Then I walk back accross Fordham Rd. and I decied to pop down to Arther Ave,( little Italy) to pick up some good bread. So I walked home. It was a nice walk the streets were quiet and even though the side walks were not cleaned it wasn't bad. The best part was I left the house at 8:30 am and was back home by 11:00am.
Now Joe has gone out with the 2 to go sledding for a while. The house is nice and quite but of course there is always plenty of laundry to do. So that is all I have planned for the rest of the day.

Appointments

Well we got the call today and I even got to pick out the day for Finnian's hip surgery. It is scheduled for March 2nd and right now I am not sure of the time but at least he is on the books for it.
We also got a call from the MRI unit reminding us of his appointment on the 17th. The girl was surprised when I told her that he all ready had his MRI done in November when he was in the hospital. I guess with the fuss they forgot to cancel it.
Tomorrow is the big day for Finnian when I go and battle the Department of Education for school placement and services. I won't sign off on anything tomorrow as we are still waiting to get his low vision evulation done. We had not heard anything and thankfully his pre-school coordinator found out why. We should be getting a call in March for an appointment in April. I am hoping to get him in to the school down the street as our main priorityfor him are his therapies right now.
We are supposed to be getting a big snow fall it has not started falling in the Bronx yet so it will be fun tomorrow when I go to the District and see who will show up for the appointment. I was supposed to meet with his pre-K coordinator to sign the papers so he will go to summer school but she was very nice and told me that with the weather she would more than likley not be in so we are going to meet on friday instead to take care of that.
I aslo called the eye doc;s office and just left a message to re-schedule his appointment. I don't know how he will be after his hip surgery so I will call Stewart again tomorrow and see whats going to happen.
The kids already know that they don't have school tomorrow and Joe is off from work well its his day off this week so they have plans made to go sledding. Maybe we just might take Finny out too. Well we will see.
I twisted my ankle today and it did not hurt didn't swell but as soon as I sat down tonight it started to hurt and of course it swelled. At first I couldn't figure out why my good ankle was hurting me. Well thats all I need now with the snow. Ah I will just wrap it up and it will be fine.

Sunday, February 7, 2010

Finnian's Birthday Party


Finnian's bithday Hat that Maura made for him So happy

Yes that is his foot he is trying to put in to his mouth


Happy 5 th Birthday Finnian

Yes he is wearing a pink shirt

Waiting for his treat

Oh yes, my lovely cake (whipped cream)

yummy


Look at the mess I have made and yes the plate tastes good too

Cream is every where

Wednesday, February 3, 2010

Doctors visits

Well this morning I took the boys to the peds office and Eoghan does have strep A but thankfully he does not have Scarlet fever. Then Finnian got checked out top to bottom and his ears and throat were clear of any infection so he got his 5 year old shots. So he won't be getting any more for a few years , well he will be getting his flu shot. They took some bloods to check for lead and a CBC I love they always ask do you want any of med leves checked? Oh yeah he aslo got his TB test done that is something he will have to get checked every year. Then we came home or I should say dropped Eoghan off at my Mom's and then went down for Finnian's ortho appointment.
The X-rays took for ever and we finally got up to see the ortho. So we got put into a room and the nurse pulls up the new x-rays and of course I have a look. His hip looked a bit worse than before next thing the doc comes in and he did agree and he decided to go ahead with the surgery. He went down through the pros and cons of the surgery, the risks , how long he should be in the hospital, the possibility he might need a blood transfussion and all th other things they tell you about when the child is having a surgery. So we don't know the date of the surgery but I am supposed to be getting the call tomorrow from the lady that sets up the surgery appointments. The one thing is he got fitted for his brace that he will be wearing after the surgery no he will not be in casts just a brace. For once something fitted him straight off the shelf and there is even room for the swelling after the surgery. So we got to take the brace home with us. John was funny he said " just remember to bring it with you the day he is going to have the surgery". Its great they are going to get the clearence from the doctors for the surgery so its one less thing I have to worry about. So now we wait.

Tuesday, February 2, 2010

Well flip flops don't work

I had to take the tub mat out of the bath today. I have been wearing flip flops in the shower and I thought that they would help but today I know they don't. And, no, Mr McD my arse is not as red as a baboons.
In a way I am like my kids and we seem to have our own way of how things effect us. Take for example today the first thing I noticed was that my skin on my upper body was itchy. for a miniute I just thought I had the water a little too hot. Now it wouldn't have been the first time I hopped in to the shower and found out the hard way I didn't turn on the cold tap. When I realized that not only was my skin crawling I was light headed I knew right then I was having a reaction. About 6.5 years ago I had a major reaction to motrin and ended up going via ambulance to the ER at about 4.30 am. So today when the symptoms were almost the same I knew if I didnt get out of the shower I would be in trouble. So I get out and the first thing I do is take 2 Benadryl and 2 puffs of my inhaler and then I take my blood pressure. My pressure was low but ah it was all right. So I just layed down and put my legs up and slowly my pressure came back up again.
I know I should go to an allergist and I know I should have an epi-pen well I had one but it expired about 2-3 years ago. I guess I just have to take time for me and get things figured out as far as the allergies. So from now on its only silicone bath mats that are allowed in to my house.

Another Warrior down

Well it seems that the "bug" is making its way through our house. Eoghan was complainign that his throat was a bit sore but we couldn't see anything. So we waited to see how he was this morning. His throat was a bit red and he has a slight temp 99.7. So I just kept him at home and decided to wait and see what would happen. Well he now has a temp of 103.2 so he got dosed up with motrin and its off to the docs with him tomorrow morning. Its not to bad as Finnian has his 5 year old check up so Eoghan can tag along.
Maura's rash is almost all gone and she is back to normal she just looks a bit washed out. So far Eoghan doesn't have the rash which is good but we will have to wait until tomorrow to see if he has strep and which kind.

Monday, February 1, 2010

Well she is sick

Took Maurs to the doctor today and she has Strep A infection which caused the Scarlet Fever. So a course of antibotics and that will clear it up. So as long as she takes her antibotics she will be fine so now hopefully no one else will get it.
It was funny when I said to the doctor "I need a note for school to say she has strep and scarlet fever" he gave me the note and all it says is strep throat. She can go back to school in 3-5 days as long as she has been fever free for at least 24 hours. So Maurs will get to hang out at home for a few days.
Never a dull moment in my house

I get asked Why"?

The thing is Finnian has problems with his hips and on Wednesday we go back to the ortho doc to see if he will be doing the surgery on his his hip soon.
What people say is "Why" Why would I put my child who may never walk through a major surgery like that? Well hello!! may be the reason he doesnt' walk is because it hurts to put weight on the leg. Or may be there are times when he is not himself and you know he has a pain somewhere, may be its his leg?
Yeah its a major surgery and he will be under ansthesia but if it will improve his quality of life and be pain free I am all for it. Hell if it were you wouldn't you do it? I know I would.
Yeah my son is now 5 years old and unable to walk, talk and he wears nappies but at the same time he is treated like a regular child. For example tonight he was on a feed via the button in his belly and he disconected it and there was formula every where. I said " did you do that?" he said "yeah" and started laughing. I told him that it wasn't nice and if he wasn't hungry all he had to tell me " no, eat". He can say no and he signs eat. So I asked him "can you do that?" I get a dirty look and a "yeah". So I clean him up and put on clean jammies and then I just go to hook him up agian on his feed. He puts his hand over his button and says "no". So I asked him " are you all done" and all I get is "yeah". So I put him in to bed.
The thing is we forget that he is 5 and there is more going on in his little noggin. We just have to push him to make more sounds but at least we can play 50 questions and get a "yeah" or "no" out of him. A few months ago he wasn't able to do that because of the seizures but now that we seem to have better control we have to push him again to regain what he lost.