Good Bye Dad

Dear Dad,
It was hard to say Good Bye. You did get a good send off. Lots of people came to give their condolences from near and far. Everyone was shocked at your passing. You know its never easy.
You know Dad I can still hear Mam's panicked voice " Jesus Christ, come quick there is something wrong with your father, I think he's dead!" I just took off and ran over. You know I don't know where my strength came from but I was able to to get you up and lay you down on the floor and I started CPR and at the same time I am yelling at you to fight. The EMS arrived and took over. As they were taking you out to the hospital the EMS asked " Who is going to go to the hospital with you?" They all just looked at me and Michael said it would be best if I went. Can you believe it Dad? they all chose me emotional Annie. That was a hard phone call to make back to the house well I called Michael on his cell to let them know you didn't make it.
Everyone is surprised at how strong I have been but you know they didn't see the river of tears I cried at the hosptial well now they know about it and they didn't see the second river I cried writing this. You know Dad it was heartbreaking to hear Mam say "What am I going to do with out him?" I know you would be saying " Nellie Dear you will get on fine without me". Don't worry Dad we will look after her.
Love Ger

The Greatest Man I ever knew..................

Its with a heavy heart I am writing this. But the Greatest Man I ever knew passed away today. John Cosgrove who was a husband for almost 45 years to his wife Ellen (Nell), father to Michael, Geraldine and Deirdre, Father in-law to Siobhan and Joe and Grandfather to Rebekah, Aidan, Eoghan, Maura and Finnian. Brother to Mary, Michael, Tony, Paddy, Eamon,Tommy(RIP), Brendan and Peggy. Brother inlaw to Tom, Bridie, Brid, Eileen, Margaret, Pat, Teresa and John. Uncle and GrandUncle to many. Also a friend to many.

My GI visit

You all know I have been very sick with my belly and no it wasn't the bug that our Finnian had. After seeing the GI doc today he basically agrees with me that it was probably gallstones. Yup you can still get gallstones even with out a gallbladder. The stones can form in the duct from the liver. I have to get an ultrasound of my liver to see if there are more stones and he did more blood work to check my pancreas and liver out. He said if they show signs of stones then he will able to an upper GI scope to remove the stones I forget what he called the GI scope. He also thinks I am lactose intolerant. That doesn't surprise me either. So I have to stay on the Nexium until I see him again.

He is finally on the mend

You know in the last 5 years I have seen our Finnian puke,toss, vomit what ever you want to call it many times. But this time it was really bad. So bad I was ready to take him to the ER as he wasn't even able to keep his meds down. Normally he can hold down diet ginger ale that is flattened on a low pump rate but not this time. You all know how bad it is to have the dry heaves well its worse to watch your child having them. I even called the GI to see if there was something that I could give him to stop him from throwing up, but because of the keto diet there is not alot I can do for him or give him but to watch him and ride the storm out. We kept watching him for dehydration because he is medically fragile he would go down hill really fast. Thankfully he kept peeing and he must have been keeping something down. His low grade tempature finally broke today and knock on wood he has kept everything down. I even gave him some formula but on a very slow rate and he kept it down. I was so afraid that his potassium levels would drop as it has happened before so we have kept him on his pluse ox to watch his heart rate and also his O2.
Thankfully this evening he is coming back to his normal self but he still has a cough and his tonsils are still very inflamed so hopefully the antibotic will start to work on that now.
We heard via the neuro's office that there is a bad tummy bug going around and a friend of my Mom's said the same thing she knowns some people who have had it. There is also swine flu going around hopefully that doesn't come knocking on our door.
THankfully our lad is pulling through and we have avoided a trip to the hospital.

A web tv show

Please take a look at www.exceptionalfamilytv.com . I think its great but you can form your own opinion when you stop over to visit Zachery, Molly and many more special kiddos.
If you are Facebooker you can aslo follow along on FB.

Just look at this handsom little lad

Happy Belated Fathers Day

So sorry to the Dad's out there I didn't forget you to wish you a Happy Fathers Day I am just doing it a few days late. Sunday was a bit busy as the family came over to celebrate both Fathers Day and Finnian's Graduation.
Finnian got up coughing on Sunday morning but otherwise he was in great form. He even let us dress him up in Eoghans Kindergarten cap and gown and let us take a few pictures. But at 3 am on Monday morning I heard him basically choking and coughing, I had to get out the sucko to try to suction him. He sounded all crappy in his chest so he got major cupping on his back to try and break up the congestion. I had to resort to putting the suction cather down his nose to get the crap out. Found out today why that was his tonsils are huge, they are touching each other and his uvula is not where it is supposed to be. No wonder I couldn't suction out his throat. The ENT doesn't think its necessary to remove his tonsils but the Peds agrees with me. He has also been pulling at his ear it is full of gunk and you cannot see his ear drum. He got started on an antibotic and ear drops to remove the gunk. The peds is going to put on the medical clearence form that he suggests the removal of the tonsils.He had to miss his last day of school to go to the peds. They also are checking him for strep.
On a sad note one of the ladies at the peds office who we have known for the last 10 years passed away suddenly. Melody suffered a massive brain aneurysm at the age of 44 years. She was a Mom to 5 children the youngest is 16 years old.
RIP Melody.

Here he is Our Graduate

Getting his diploma with Bonnie

See I really did get it

Cheeky Finny

Look my Diploma

Me and my Bonnie

Me and Mammy

Me and Nanny

Me and my girlfriend Alyssa

Me, Mike and MaryAnn

Me and Priscilla

Pictures of me in a cap and gown will follow when Mammy gets them done.

Our little Finnian today was was a great day one we didn't think we would see. You see 5.5 years ago we were told you might not live but you are a true little warrior. You are doing things that even your brain scans say you should not be able to to do. Mind you people always say "if you were normal you would be doing........." But you know to hell with being normal , sleepless nights, hospital stays, medications, therapy, doctors appointments thats our normal.

So big cheers to our Pre- K graduate. We love you.

THis is a link to see his questionable seizure that he had last night
http://www.youtube.com/watch?v=oRiSR8HVSVU

Weird night

Finnian threw us for a loop last night. He had something but cannot say if it really was a seizure or if it was something else. Well first he went pure WHITE and had some spastic movements then it was just like his breathing was affected but only whe he inhaled he sounded like a whoopee cushion. All I did was grab his bag and got the camera. We got some on tape before the battries died. Put the pulse ox on and his O2 was at 97% but his heart rate was at 169. Checked his lungs and I could hear some crackles in his upper right lung so pulled out the nebulizer and gave him a breathing treatment and it cleared the sounds in his lung. Then later on I took his tempature as even though his body felt normal but his hands and feet were hot. It was 99.8 so I gave him some Calpol but I left the moniter on him all night. His O2 was going up and down but the lowest I saw it was at 87% but once I would reposition him it would come back up to normal ranges. Will call and let the office know but I cannot say if it was a seizure. Oh roll on July 18th until we see the movement doc.

Friday

Well today was a better day for our Finnian. Yesterday he was crying alot and no one knew what was wrong with him but of course after about 4 questions we forund out his ear was bothering him, took a look in and it was yucky so started him on the ear drops to get all the gunk out. He will be getting his tubes done in about 3 weeks. Today he was like Mr. Hyde at school happy particapting in class he even did OT and PT and laughed . Even this evening he is in fine form. I sure do love when he is like this.
We have noticed an increase in his movements and I even got some on tape to show the movement guy. You know looking back he has always odd movements but you know thats in the past and we will just wait and see what they have to say at his appointment.
I was feeling much better and yesterday I decided to have a mug of my beloved coffee. Oh it was sooooooooo good but I was in agony an hour later and the worst part was I wasn't at home I was in the pharmacy getting scripts filled for Finnian when the pains hit me. Oh roll on June 23 until I see the GI. I will be all right as long as he doesnt give me a rake of pills to take. I am not that good at remembering to take pills for my self but everyone else I will hound to make sure they take their meds.
Eoghan an dMaura were off from school today there was a teacher's confrence. So Eoghan hung out with Nanny and Granddad while Maura came shopping with me to get an outfit for Finnian for his graduation next week. I am ging to dress him up in Eoghans cap and gown from kindergarten and take some pictures. That is going to be fun trying o get Eoghans cap to stay on Finnians small head. Oh well I hope Finnian is in fine form tomorrow when I try .

Busy,busy and I have gallstones again

Well the weekend was busy and hot. Maura had a birthday party on saturday and we decided to walk to the party. Finnian was all set up in his big buggy and staying well hydrated and we added an extra sun canopy to keep the sun off of him. He was in a great mood and was singing I think everyone was a bit shocked that he could do that. Mostly when they see him he is just a blob sitting in his chair.
I was a bit under the weather since Thurday I thought I had a bug but I soon knew it was gallstones. Today it was really bad and I decided it was time to go and see the doc but he wasn't in. I have an appointment to see the GI later in the month.I guess with all the heaving today I got the stone dislodged. Thankfully I am not in constant pain anymore just a bit sore and I will have to be careful with what I eat. It has been almost 12 years since I had my gallbladder removed because of gallstones but just because you don't have a gallbaldder it doesn't mean you canot have gallstones. I guess I will have to wait and see what the GI will say.
Eoghan was at the GI on Monday for his check up and he has to have another GI scope with biopsy done to check his tummy and esophagus for eosinophilic cells. It was great I called today and they can do it next Monday. He is a bit bummed out as it is dress down at school on Monday.But at the same time he is happy to get it over and we won't have to worry about it over the summer.
On Friday I went to the school district and told them in writing that I was not accepting the school placement that they were giving Finnian. I got told " you only get one choice of placement and by law the child does not have to be in school until he is 6 years old, If you don't hear anything by the 15th of June just file for impartial hearing for placement". Why would I send my child to a school that cannot fullfill his IEP? I know he will never be Einstin he may be blind, non verbal and in a chair but he can count to 20 he taps for each number as you say it he knows how the alpabet goes. We will sing the alpabet and sometimes mess up he will shake his head
"no" letting us know its wrong the same with counting. So there is more going on in his little head than we give him credit for.

All I can say is thankfully I had not checked the mail over the weekend. We got Finnian's school placement letter. Not the school we wanted. Went to check out the school they gave him my Dad went with me as he didn't want me to be walking around in the neighbourhood where the school is on my own. Everyone I met were very nice but to me its not the right place for Finnian. I guess I just have to go for an impartial hearing as his IEP is still not done and we have not heard anything from the medical board about his nurse going to school with him and its not the school we wanted for him. My psorsis and ezecema are raging since Monday evening since I read the placement letter. I have called the placement at the Dept of Ed but they don't return calls. Called another person and got told "off record" just go for impartial hearing. So in other words our Finnian is getting shafted by the dept of Ed. Thats is just sick.
We saw Nicki on Tuesday she is the NP at the ortho's office and she took the big plaster of his leg and there was no blood on it. He has been in a better mood since it was taken off. Now we just have to wait until the steri strips fall off.
Next month we see the movement docs and hopefull they will be able to tell us if he has and what type of movement disorder he has.