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.