You will not believe what Eoghan did today!!!!!

I was doing laundry and Eoghan asked Bonnie ( Finnian's nurse) what happens when you swallow a quater?Bonnie was in the middle of doing something with Finnian and said to Eoghan " What did you do, did you swallow a quater?" And he said "YES""DOes your mother know?" No I just walked in and Bonnie said Eoghan swallowed a quater. Not believing them at first yeah right he swallowed a quater. He told me when he swallowed it then 50 questions come out is it stuck? are you sure it was a quater?what possesed you to put dirty germy money in your mouth? you get the picture?
First I call the nursing service we have through our insurance they told me to get in contact with the Peds office, So I called the peds and told Paul what Eoghan did and what should I do he put me on hold and came back " Geraldine you said it was Eoghan not Finnian? Yup thats right so he put me on hold and came right back " they said to take him to the ER. So off to the Er we go they all smile when I say he swallowed a quater. He had 8 x-rays done and yes he did swallow a quater I saw it on the x-rays. The reason he had so many they wanted to make sure it was making its way out of his stomach. So we got sent home with instructions to check for the quater for the next few days. If it doesn't pass in 3 days go back to the peds office. if he starts to vomit and has bad pain take him back to the ER. SO I told Eoghan if I catch anything in his mouth other than the food I give him he knows what will happen.
SO that was the great excitment for today

I think I know whats been causing the vomiting

Well our boy has been vomiting off and on and I think its due to the heat and his delayed gastric emptying. I adjusted his flow rate on his pump and decreased the amoount of formula we were giving him and so far so good no puking, The only bummer is he seems to be on his feeds all the time now. But I will take that over sour milk comming out his mouth and nose. My biggeest fear was he has been puking in his sleep and I was so afraid of aspiration so I wasn't really sleeping everytime I heard that "cough" I was up in a flash. Now I feel like crap I guess I am just over tired and also my sinuses are acting up and my voice is getting a bit funky due to a post nasel drip. The kids love when my voice is gone so maybe I will take a trip to the docs office if its not better by Friday. I do not need to get broncitis during the summer had it one year and it almost took 4 weeks to clear up. Two rounds of antibotics and a course of steriods and daily asthma meds. As usual I will take the wait and see route.
Well tomorrow Finnian goes to see the ENT and we will see what he has to say about the ears.

We had a few days of no projectile vomiting and yet again he started last night. The poor little lad it just shoots out his mouth and nose his heart races and I don't blame him he seems to get upset. He was talking away in his own gibber last night and then he made that little cough and next thing it was everywhere. All I can say is thankfully I can strip my couch because all the covers went in the washing machine today. Of course while I was doing laundry he spewed all over his bed. He had eaten almost 2 hours before and he was tired sitting up and it was time for a nap. So we did do everything by the book but yet the doc said unless he is throwing up after every meal not to worry. But as soon as he is finished he back to normal right away so I don't know. All I can say is I am doing alot of laundry.

So many appointments today

Well to day Finnian played hooky from school as he had many appointments today. Eoghan and Maura were a bit bummed as today was the last day of swim class and they were having a party, but a big fat pretzel and a hotdog from the cart outside the hospital fixed that.
First appointment was blood work and we found out that they don't check his blood for Banzel at the hospital but they did all the other blood work on him.
Second appointment X-rays of his hips and spine we got Matthew again which was great.
Third appointment ortho with Dr.H and from Finnians x-rays if he was high toned he would be having surgery right away to fix his hip but because he is low toned in his hip area the doc would like to wait until he is 5 to do the surgery so when we go back in January if his x-rays are still the same he will be having the surgery. It was something we knew that he might have to have done since his first appointment with Dr.H and that was 2 years ago.
Fourth appointment was with his nutritionist to get his calories increased on his keto diet not bad he is 34.5 lbs and 41 inches.
The fifth and final thing was we had to drop off some stuff at the neuro's office and ask for some refills on scripts and to tell them that the lab doesn't check the Banzel level. We also made our appointment for September.
So needless to say we had a busy day. We have to go early again tomorrow to see if we can get Eoghan and Maura signed up for swimming. THey really want to do it and it is free at the city pool so why not .

Shoes

Back view

Side view

Don't they look cute

Well our Finnian is very hard to fit in shoes with his "legs" braces. Oh yea just go up a size or two but it is hard when 1; he has a wide foot, 2; he is very high arched by the time I am finished he looks like he as 2 fishing boats on his feet. His feet do not match his body by the time I am finished getting shoes that fit over his" legs". I have tried the shoes for the braces but when you are dealing with a child with low tone who wears braces by the time you are finished he is carrying almost 2 lbs on his feet and that is not good. The answer Crocs they weigh almost nothing and with the back strap the will stay on adn if I may say so he looks quite spiffy and normal. How many kids wear Crocs? Well so does my Finnian they don't need the support because the braces give them the support they need the Crocs are just foot covers to protect the braces. Now I just bought a spin off pair to see how they would work to be honest I paid $5.99 in CVS for a pair but they only had them in Navy I am fond of colours so I will be on the look out for something a little more summery.
So if your tot is not walking but you want footwear for over there braces try a pair of Crocs or like me a spin off pair. There will be more notice taken of the shoes than the braces.
I will now get off my soap box.

Sunday

Maura, Daddy(Joe), Finnian and Eoghan

Beautiful clouds and there was like a rainbow in the them

Finnian chillin

Well we braved the beach again today with Daddy. We got there much earlier thatn we did the last time. It was great so by the time we were leaving it was getting very busy. So on the way home we took a detour and went and bought a beach umbrella. It will provide much more coverage for our boy Finnian. Must ask Nanny if she will pick up another brolly for our buggy. I went to two baby stores to see if I could get one but a lass no couldn't one. So Nanny can pop in to one of the baby shops in Galway and get one for me. To be honest I like the baby brolly for his chair it has more adjustability than the stroller canopy.More pics form the beach today. Also so far so good no projectile vomitting today. I just reduced down the flow rate cbut now it seems he is constantly on a feed. Its better than vomitting.

Happy Birthday Sean

Its my little cousins birthday today. Happy 20th Birthday Sean.Sad to say but every picture I have of Sean is on a tractor. Here he is putting Eoghans seatbelt on.

Side effects or something more???????

Our Finnian has an enlarged right ventricle the cause of this was from a stroke before he was born . It caused the flow of CFS to be blocked going out the back of the ventricle. But we were lucky that it found a way around the blockage. So after he was born he was monitered just incase he would develope hydrocephaly. Thankfully he didn't and he has not been shunted.
We were given the signs to look out for just incase he would develop it later.
The thing is he has started to projectile vomit and of course I went web surfing and now I am really questioning myself and I cannot wait for the Neuro's office to open on Monday morning. When looking I found that pressure can build up in the ear and our poor Finnian has had 3 ear aches back to back antibotics given with each one and he still has fluid w were thinking new ear tubes but now adding the projectile puking they are both signs of increased intercranial pressure. Oh I don't know am I jumping the gun and too many thoughts are going through my head. I am not sleeping as he is even vomiting in his sleep and I am sooo afraid of aspiration. Then again may be its his nissen, may be his formula is going sour in his tummy as he does have delayed emptying, maybe he is over heating and its away his body is telling us. So many questions and yes I am stressing out. Last week I had beautiful finger nails now I only have stubbs and hang nails. Not to worry if he gets worse I will bring him straight to the ER. Oh how I wish I drank a good stiff drink sounds good.

Well I have moved on from "the Manual" post. Finnian had a great day in school and I aslo got some thing acheived for him at home. I have an appointment for a DME supplier to come and measure him for a walker. Can you believe it? Well in school they have him in a Rifton gate trainer and he doesn't really like it as his hands get tied down on the frame. But while surfing the net I came accross a product by Prime engineering called a Kid Walk. I flew it by his PT both old and new and they were all very interested in it. His old PT from EI thinks its the right one for him becasue it will encorage him to move ( action/reaction). So we are meeting with Ty on friday and we will take it from there.
I also got an appointment with a new ENT for him in two weeks. I went over it and I chose to bring him to Colombia to see a ENT. Well they can access his chart on the computer and if he needs new tubes putting him under ansthesia won't be so difficult. H'mmm if he does need to get new tubes may be we might be able to get his eye doc to check out his eyes at the same time. He doesn't want to just put him under to check his eyes out so this might be a way to get 2 thinkgs done at once. Well we will see.

The Manual

I got asked a stupid question the other day and I will fly it by all who have children, had children with special needs. Are you ready?????
How do I know what to do with my son? Of course my answer "What?" The ****** idiot said it again very slowly and added do you understand. My bitchy answer " I might speak with an accent but I do speak and understand English and what the hell do you mean by how do I know what to do with my son?" " Well is there a book for children like him?" Oh the stupid woman wanted to know if there was a Dr. Spock manual for children with special needs. I told her if there is I haven't read it and I wouldn't. And I walked away and muttering under my breath The ******* idiot wanting to know if there was a manual for raising special needs kids. The thing is there is not one book for a kid like mine there are many books based on his diagnoses. I won't lie I have read a few based on his diagnoses but not a book on how to raise a special needs child. I am raising my son based on Love, Hope, courage, diagnoses and my own gut instincts along with information I have received form parents like me and the medical professionals.

Well the bubble burst

Well today at 11:08 am we had a bad seizure but it was over by the time I had gotton all of his equipment set up. So that was good it was less than 1 minute. But then at 11:38 am he had another one and this one was harder than the first one . I had everything ready just incase of another one so when I got his pulse oxmieter on him his O2 was 87 and his heart rate was 197so I just got the diastat and gave it to him. thankfully it stopped the seizure he is still on the pulse oxmieter as his levels have not totally stablized out yet. This happen sometimes when he has a few seizures. So the question is " was he out of the seizure the first time ?" I don't know but it did not follow the usual path only 30 minutes between each seizure when normally its 3-6 hours between these ones. Is it because he has an ear infection? the last time he had the ears in much worse condition when we started the antibotics and he didn't have one of these never mind having 2 in a half an hour. So many questions and so little answers.
SEIZURES SUCK

Well I was right

Our poor Finnian has ear infections again. So the doc said bring him back to the ENT as this is his 4th ear infection in 2.5 mths. So must call the ENT office on Monday. Ia am debating wheather or not to bring him to a new ENT doctor. I love the doc we have been seeing but its such a hassel when they do the tubes as I have to get a medical form filled out get blood done and then when the anesthia guy comes along he nearly has a panic attack. Child cannot get what ansthesia? Child has seizures? Child has...? Child has....?Child has...? and the list goes on. At least if I cna get one at Colombia Children's Hospital all his records are there and its sad to say but we usually meet someone that has already put Finnian under ansthesia but at the same time its great. So I will think about it over the weekend and see what I am going to do.
It was funny when we were at the peds today the doc walked in and said Finnian is having a seizure. I just looked and said yup. He was amazed at my relaxed reaction to Finnian having a seizure. But it wasn't a bad seizure to be honest we don't take too much notice of thoes ones unless he starts to have them every 5 minutes and is having them for 5 minutes +. We mostly see them when he has ear infections or when he is sick so to me its just his way of letting us know he needs to see the doc to get antibotics. Knock on wood we havent had a Grand Mal seizure since he started on the Banzel we are now at week 5 we just have another week to go and then we will see if the Banzel is going to stop thoes suckers.
Have a nice weekend everyone

Sounds like ear infections again

You are all wondering why I say " it sounds like ear infections again" its the only time he whines,cries and the only way he stops is in a semireclined position and you move him constantly like rock him or put him in his chair and walk him. This is a bummer as he is only a week off the last round of antibotics. Being that he is on the soy version of the keto diet its not every antibotics he can take. We have done amoxicillian and the last round was augmentin which usually gets rid of the infections but this time I guess not. So if he has ear infections again I am just going to callthe ENT and see about getting his ear tubes don again. The last ones are still in place but are probably blocked. When the child has pain he is at a higher risk of having seizures and I have seen some myclonic twitches today.
Maura also is a bit croupy, she has the tell tale cough so I just started her on the allergy meds and put her back on the nebulizer. Will also get her checked out tomorrow. Eoghan has to get his allergy shots at a different office ans they both have swimming tomorrow morning. Whew I have a full schedule for tomorrow. There is never a dull moment in my house

Swimming

Well this morning we all set off to sign up for swimming lessons. They are free, yes free, but on a first come first serve basis. I got them in to a class that starts on Wednesday at 9am. They will be going Mon,Wed and Friday from 9am to 9:45am. Its great I got both of them in the same class and its somethin for them to do early in the morning. We walked there today and it will take us about 20minutes so its not bad its good exercise for all of us. Well I need it the most but I am down now 11lbs and I have many more to go but its a start.
Its just Eoghan and Maura that will be going to the swimming as Finnian will be in school. I will try Finnian in the pool again its opened daily from 11am to 3pm and again form 4 to 7pm. The last time we had him in the pool he had major seizures afterwards I don't know if it was the chlorine of if it was just too much stmulitation for him but I am willing to try again since we seen to have better seizure control now. He loved the beach on Sunday he kept flipping himself until he was on the sand it was fun to watch him he looked like a fish out of water flipping and twisting but he did achieve his goal to get on the sand. He kept telling me the sand was nice until he got some on his face and in his mouth. When I asked him is the sand nice now he shook his head no but once I cleaned him up he was back to his tricks again but leaving his head on the towel.

Sunday at the beach

Today we went to the beach. Yup I braved the beach with the three kids on my own. Well lets just say Joe wasn't feeling to good he was very hung over. So I have no pity for him but I wasn't about to dissapoint the kids and not go to the beach. We had a very nice time and I even remembered to bring the camera and we took some pics

Some pictures from the 4th of July

Uncle Mike

Maura, Aidan, Finnian and Eoghan

Maura on a mini Dragon coaster

Eoghan comming down the slide

Aidan coming down the slide

Maura at the top of the slide she came down to fast to get a good picture

Finnian on the swing

Maura on the swing

Look at Eoghan pushing Finnian on the swing

And again

Fireworks

Cool how this one came out

some colourful ones

And thats it

Bloody seizures

Well we had a bloody seizure today but on the bright side I do know what caused it. He has an Infantile spasam seizure and even with diastat it lasted almost 20 minutes. I guess didastat doesn't work on them any more which is a bummer. We gave him 7.5mg and it did absoultly nothing to him didn't even make him sleep.
Oh yeah the cause of his seizure a bad thunder storm. Yup our boy is effected by heavy rain and boy did it rain. As I would normally say it rained like a cow pissing on a flat rock, fast and furious.
Eoghan doesn't like thunder and Maura said "Eoghan its only the angels bowling" but that doesn't work any more with him well he is 9.