Its Pediatric Stroke Awareness Week

This is something I can relate to as our Finnian is a stroke surivor. The biggest misconception is that kids cannot have a stroke. Well yes they can and the out come of every baby, toddler, child and teen is different.
Our Finnian had his stroke between November 2nd 2004 and December 9th 2004. The reason we can pin point the time is due to monthly sonograms.So his occured between months 6-7 in utero. I remember being told that it looked like he had a bleed in his brain and it it blocked the flow of spinal fluid out of his right ventricle. So our journey began specialists.scans, MRIs doctors new OB/GYN, new hospital all at 36 weeks pregnant.
The only thing was Finnian didn't grow after he had his stroke at 7mths they figured he was 6lbs 10 oz and about 19 " when he was born he weighed 6lbs 12oz and was 19" long. When he was born he did everything they didn't expect him to do and they couldn't find anything wroing with him but time would tell and as long as would follow up with everyone they couldn't see keeping him in the hospital so he came home with me when he was 2 days old.
Time did tell and we are still learning about our Finnian. But Finnian is Finnian and he is a gift. So just remember Yes babies can have strokes.

Eoghan and his EE

Well our Eoghan ha been having trouble with his belly again. Got a call from the school on Monday that he felt sick in his tummy, he had a slight temperature and didn't feel good. I just went and got him from school. Then today the nurse called again that he was in her office feeling nauseous but he didn't have a temp. I told her not to worry but send him back to class its just his allergies the tree pollen is very high but Eoghan doesn't have the same symptoms as most people with allergies his effect his digestive tract. You are wondering how can tree pollen effect his digestiv tract well when you breath in everything goes down the one pipe so he is inhaling the tree pollen. So not only is he on meds for the EE and getting allergy shots he is now on allergy meds.
I feel like I haave a pharmacy in my kitchen. Oh well thats life in my house.

Eoghan

Well we got the date Eoghan will be going for his next scope with biopsy the end of May. I diddn't know how he would take the news but he said " Its ok I'll be asleep"
Can you believe that? He doesn't mind. I suppose I should be thankful at least I won't be dragging him screaming and kicking to get it done.

Its our Anniverasry

Can you believe it he has put up with me this long. We are married 10 years today.The birthday girl is her with us too.

Happy Birthday Nell( Mammy,Nanny)

Happy birthday to our Mammy.

He is still under the weather

He still is not himself soI called the doctor today so see if we could adjust his meds back the way they were. Since we decreased his Keppra the weather has changed been very rainy. So is it the change in the meds or a combination of both. Well we will find out as I got the go ahead to put him back the way he was on the Keppra. Its hard to describe what his symptoms are but he was very whiney and crying alot and his poor tummy was well still is very upset. He was also having alot of startles but not enough to say yes his is seizing.
His teacher called to see what was wrong with him as he really has not been right since he went back after the Easter break. The weather has a huge influence but even she said its more that the usual rainy day bothering him.
So we have to keep and eye on him and if his symptoms don't improve they want to check to see if he may have kidney stones they are a side effect of the Keto diet but at the same time they might bring him in to do another EEG to see if something else is spiking. But then again he has been on Keppra for three years so it might not be working on him any more. We will just ride it out for now and wait and see

Finnian's school picture

This is his first school photo. He is not my little boy any more he is my little man.

Well our boy woale up very early this morning well I should say in the middle of the night crying and very jumpy. Oh yes it was raining. He finally fell back to sleep about 3:45am. He woale up again about 7:30am still cranky and not himself so I gave him diastat and by 8:30 he was back being the same Finnian.
He went to school and slept so he didn't get his picture taken but woke up and was hungry. THen about 1pm he got cranky and out of sorts again and yes it was raining heavy again.Once the rain stopped he was back to being Finny again.
Got home and was a wild man so he got put on the floor he was all over the place he even got DVD's off the shelf by the tv and straight in to his mouth. Then all of a sudden the crying started again and yup it was raining.
So is our Finnian a weather man(boy)? I think so we always know when its going to rain. Hopefully the April showers will bring May flowers and I cannot wait.

Hair cut

Oh yeah he did get his hair cut. I cut his hair well with the weather I didn't want to take a chance of sitting in the chair and him to fall out in a seizure. I will post pictures later/

Monday and Tuesday

On Monday I took the boys to the GI and the results Finnian to continue on the prevacid 2x daily and our Eoghan has to go for another endoscopic scope with biopsy. Well its the only way to know if everything is going good. He is ok with the test done again as he said "it doesn't hurt because I am asleep". So now we are just waiting to find out when his next scope is.
Now Finnian on the other hand is having crappy days no he is not sick well not sick sick if that makes sense. Its the weather and he is having small seizures and he is so cranky. The latest is his tummy gets upset so there is a lot of venting and smaller feeds going on. I don't know whats worse him not being able to pee or his belly bothering him. Well with the peeing problem that is easily taken care of we just catheterize him but the belly it goes on all day.
I hope he will be going to school on Wednesday because he might be getting his picture taken for a catalogue. Its for special needs toys so we are game for that. Will keep you all updated if he gets selected for the catalogue.

Well the weekend is here and we are finally getting with the times. We are up grading our computer and our service. So hopefully it won't take hours to up load pictures. It was funny some of my Easter pictures took me 4 minutes each to up load and email to my Mom and it took her 32 minutes to download them and all I sent her were 4 pictures. So I think my Mammy will up grade soon too.
Eoghan and Maura go back to school on Monday, well Eoghan has to go in late as he has a doctors appointment. He has to go to the GI doc to get his belly checked out and we will also find out when he will have his GI scope with biopsy done again.
Our Finnian has been having good days again Thank God compared to the start of the week. THen again the weather has been more favourable for him We are going to get his hair cut tomorrow. Thankfully there is a really nice barbar just 2 blocks from us that don't mind cutting his hair.For now its easy I just sit in the chair and sit Finny on my lap and hold on to his face and he gets his hair cut. I don't know how it happens but when I cut his hair he always has curls but when the barbar cuts his hair its always straight and it takes forever for his curls to come back. I will do before and after shots.
Night All.

Easter Pics

It must be going to rain because our Finnian was a bit funny this morning. Its hard to expain but its just little things he does that always lets us know. The one thing after the seizure this morning was he was very spastic I know thats a horrible word but I have been since corrected to say he is very contracted.
Even his bus driver gave us a questioned look this morning and asked "is our Finnian not his self today?"

I do have Easter pictures to put up but they are still in the camera. I have a very nice picture of the kids with Nanny and Grandad.

Happy Easter

Just want to wish everyone

Happy Easter.

Friday night

Well again we had a rough night. He is going good now but he gave me a scare. All I was thinking about was he is acting the same way he did in September and we all know what happened then he ended up in the hospital on a vent for a few days.
It was at 11:21 pm and we were playing on the bed he was having fun eating Maura's baby doll then in a blink of an eye he was thrashing around and very spastic in his movements. I just touch him and he nearly jumped off the bed. Panic set in, no not again.
Everything seemed to be going in slow motion and I seemed to be stuck, what do I get first. Normally I just go on super mode and get everything the first minute I hear the shout. But all I could do for a minute was watch him and tell him "its going to be OK". Then the shout happened and I was out the door on super power mode grabbing all of his stuff.
I got everything and ran back to him and started getting him all set up. He was so senstive to touch, I had to fight him to get the oxygen cannual on him,fight him to attach the pulse ox on him. His oxygen was only 76% so I cranked the O2 on. Then I went to give him the Diastat and just opening his diaper the noise of pulling the tabs he was set off again. gave him the Diastat and waited. You could see his whole body relaxing he became less spastic and thankfully his O2 levels came back up to the 89% then came back up to 96%. I took his blood pressure but it was hard to hear because all I could hear was my own heart pounding.
From the first onset of the seizure to when his O2 was back to normal was only 4.5 minutes but it seened like hours. Its been 3 weeks since he had one of these but the last one was mild compared to the one he had last night.
I'm sorry this account was very graphic but this is what we deal with. Everyone will say "I couldn't do what you did" . We all say that, never did I dream that I would be doing what I do, but I do it all for Our Finnian.

Our Eoghan

I mostly write about our Finnian here but I think its time I explained about what our Eoghan has. Our Eoghan has Eosinophilic Esophagaitis its classified as an autoimmune disorder. The basics of this disorder is he eats food and his body sends signals that food is an invader so the body attacks.
We started on Eoghan's journey last year. I had made a few trips to the doctors office with and it was always written off as a bug/virus. THey did blood,urine and stool workup on him. When I went back 3 days later they did the blood allergy test on him because his eosinophilic count was very high. Went back to get thoes results and the doc wrote a script right away for an epi pen and told me I had to take him to an allergist and a GI doc right away. I had an appointment with Finny's GI doc so I took him there first. He said at the first visit that with Eoghan's symptoms it sounded like EE but he would need an upper GI scope with biopsy but I should take him to the allergist and see what they would find out. Well we found out our Eoghan has bad allergies after the GI scope w/biopsy he did have alot of eosinophilic cell in his esophagus and stomach. THen we had to have the food allergy tests done. With the results we know what he cannot eat, waht he can have in small amounts and what are safe for him to eat. He also takes meds to help there is no cure for what he has but with the right foods and treatment it can be helped its something that he won't grow out of its something he has to live with for the rest of his life with.
So I'm not a mom on a journey with one child i'm on a journey with two children with different disorders. Am I super mom? no I'm just mom who has to read every food lable to make sure that there isn't any of Eoghan's no no foods in them and for Finnian to make sure that it is something he can eat as long as I add the high fat to it. It's a journey but it's our journey and I culdn't be more proud of my boys.

No answers

Got a call from Dr.B Finnian's results are in. Everything was all in normal levels so no news is good news. Even the stuff they sent to the Mayo CLinic was back. He is producing the enzyme ALT in low levels in both his blood and they did find ALT in the CFS it also is on the lower side but it is good. IT means that he does have ALT in his body. She asked how Finny was doing and I told her about his reaction to the sudden change in temps and the increase in seizures with the changes too. Its another symptom also a symptom is Finnian doesn't sweat like normal people so she is going to look in to something. Our Finnian is full of clues but nothing fits together to solve the puzzle. But thats a bit like life. Having a name for what he has won't change him because he will always be Finnian.

Saturday was a sleepy day for our Finnian but by the evening he was back to himself. Today was good and he got into trouble the little stinker. You are probably wondering what trouble could our Finnian get into. Well let me tell you what he does, he pulls hair and boy can he give a good yank at the same time he says "ni" (nice). He gets his feeding tube and sticks it in his mouth and opens the medicine port and then sucks the formula out. He can bite a hole in his feeding tube he might have problems but has great teeth. But what he did today is only the second time he has done it he disconected his feeding tube and there was formula everywhere. Mind I was not at home when this happened but as soon as I got home Eoghan and Maura were telling me all about it.
Not only do I have the regular laundry to do now I have a couch that I have to strip and scrub thankfully its all washable.
Eoghan and Maura don't finish school untill Wednesday but Finnian is on his spring break.

Our Weather Man

Well our Finnian is our weather man. We always know with him when the weather is changing. I feel bad for him because the weather is changing so much and quickly too. He doesn;t seem to get a chance to adjust. Yesterday he had a great day at school he gave his all in therapies. Last night he was good but I like to spend just Finnian and mammy time so he fell asleep snuggled on the couch with me. He was fine ,I picked him up to put him into bed everything was good. Put him in bed and was fixing his blanket up around his shoulders the way he likes it then I saw a twich and another and another and another.......... Dam he was having a seizure a bloody infantile spasm. All I could do was watch and wait. Thankfully it stopped on its' own it wasn't a bad one but it was still an IS seizure. So I knew then that we would be in for rain today and boy did it rain. Thunder and lightining and heavy down pours. When Finny got home we found out it wasn't a great day at school. He was in his usual rainy day mood, cranky, tried, leave me alone mood. He was abit twitchy when he came home but it didn't turn into anything we had to worry about. Tomorrow is suppsoed to be nice but rain again on Sunday.

Pulmo visit

Well today we took Finnian to see his pulmo doc. Results he is doing good but he seems to have some allergies so he was given singulair. We are to continue the pulmicort for another month and then wean him down to once a day and then stop. The singulair is just for 3 months so not to bad. We told him about that Finny gets very croaky, congested but only in his upper airway not the lungs. He said it has to do with the position of his head. When his head is hanging forward he is unable to swallow his saliva. So then when we straighten his head up right he can swallow and he cannot control the saliva so he aspirates some. So more suctioning and better head positioning. He could see some fluid in his left ear but its not infected his grommet is probably blocked so just watch him incase it does turn into an infection.
Over all he was happy with him and unless he gets sick we don't have to go back until October.
So thats todays update.

April Fools

Well they got me good today. At 7am Joe called the usual am call and told me we got a ticket on the van. Of course " what do you mean a ticket? what did we get it for?" then he starts laughing April Fool I got you. Then this afternoon Bonnie calls she is Finnians nurse and proceeds to tell me that the school bus broke down and she has the keys to her truck in her pocket so how would they get home from school. I just told her to take a cab home and I will pay for it. So I am waiting for her call to say she is near the house when next thing in they come. and say April Fool I got you.
But all in all Finnian had a good day at school and even had a good speech sesion. So tomorrow we go to the pulmo to get him checked out and watch he won't be congested.
Put in a call to the gentic doc to see if most of his results are back I don't think the one they sent to the Mayo Clinic is back but all we can do is wait and see.