Please Vote

First anniversary in Heaven Dad

All we have are memories but they will never fade. Happy First Anniversary in Heaven Dad.

We little knew that morning that God was going to call your name. In life we loved you dearly, in death we do the same. It broke our hearts to lose you, you did not go alone; for part of us went with you the day God called you home. You left us peaceful memories, your love is still our guide, and though we cannot see you, you are always by our side. Our family chain is broken and nothing seems the same, but as God calls us one by one, the chain will link again.

miss you

Father's Day

Happy Father's Day to all the Dad's out there.

Last few days

Well I don't know what the hell is going on with Finnian. One minute he is fine chatting, interacting next thing he is in a bloody seizure. Or when he is sleeping his heart rate is low enough to set the alarm off on his pulse ox. Top it off he is getting fed every 2 hours so there seems to be something beeping all the time. I guess I am just a bit sleep deprived.

The kids had their Spring Concert at school on Wednesday and it was really nice. Today they had an early day as the 8th Grade are Graduating. So Congrats to the 2011 Graduating Class at St. Brendan School in the Bronx.

Next week the kids have early dismissal so I will be picking them up at 12 noon all week except on Friday they get out at 10 am and then they are done for the summer hopefully. Eoghan might have to go to summer school we haven't heard yet so fingers crossed he doesn't have to go.

I hope its just the thunder storms that have been setting Finny off well you know I do like to blame the weather. So hears hoping for blue skies and warm days.

Appointments, appointments, appointments

Wow my calender is filling up with Finnian's appointments. There is already 1 week in July that he has an appointment a day with different doctors. We finally got an appointment to see the Neuro Surgeon to discuss the VNS for Finny.

It has been said to me that I seem to be pushing Finnian for every surgey going. Well thats not true. Every surgery that Finnian has had has been for his good. We did his cataract surgery in hopes that he would be able to see. But we have since found out its not his eyes that is the issue but the optic nerves and the part of the brain that tells you what you see. He has had 3 rounds of ear tubes put in to prevent ear infections and the main thing to preserve his hearing. He has had his anenoids removed and also his tonsils. Having the tonsils removed has made a huge difference for the better. He had his G-tube and honestly that has saved his lungs as well as we have been able to feed him and get fluids in to him when he has been sick and would not have been able to eat or drink. He had his hips fixed and what a difference no more screaming/crying. So it just shows how much discomfort it caused him. He had a muscle biopsy done to see if would tell us what might be wrong with him but it didn't give us any answers. The last surgery was the nissen and found he had a hernia that had not shown up on any scans so that was repaired while they did the nissen. So far so good he has not thrown up and he has been in great form since that was done. So every thing we have done has been for his good so if the VNS will help his seizures then I am for it. The kid is on so much medication and no one knows what the long term affects the drugs will have on his body so if by giving him a VNS will help may be to cut down on meds that I have to shove in to him well then I am for it. Most people will never know how hard it is to walk away and leave your child in the care of the OR team but we do

Hospital stay

Well our Finnian had his surgery on Monday. They found a hernia and repaired it as well as doing the nissen fundolipication on his tummy. The idea of th nissen is to hopefully stop the reflux and may be the throwing up. Well so far so good.

We didn't do the usual pain meds and it has been so much better for him. He is not sick so I guess we will stay away from the morphine and the oxycodine. The Toradol agreed much better with him. So we are now home on just Tylenol for pain.

When we got to our room after the surgery there was a really nice family sharing with us. Their English wasn't the greatest but we had such a great time. Their little guy had fallen off the monkey bars at the park and broke his arm and they had to have it repaired with surgery. It was Finnian's ortho doc that did the surgery so we had a chat with Dr. H. I was sad to see our room mates leave. The father is a minister in a Korean Church and he said some prayers over Finnian. As the father said "I feel bad my son break arm and have surgery but your Feenan can no do the same fall and break arm on monkey bar" with tears in his eyes.

Then we got new room mates. Oh wow. you wouldn't think any child had seizures like their child. You know he didn't have any while we were there and poor Finnian he had 5. They were small ones but seizures at the same time. You should have heard how the kid talked to his mother. Well just let me say I was glad we got to go home when we did. If anyone had an issue it should have been me as Finny got a medication mixed with D-5 which is a no no on the keto diet even though we had stressed no sugars. But you know what he was fine and he had had some of his seizures before the mix up. I asked for them to check his Ketones and discovered we has some dip sticks in our bag so I just checked them and he was fine.

He is home on feeds 24/7 for now but they said we will be able to bump him up in about a week or so. So we just have go with the flow. The most important thing is Finnian and his belly.

Andrea Bocelli & Laura Pausini - Dare To Live (Vivere)

The latest gossip

Well today I had a fight with the medical supply company over Finnian's pulse ox. A brand new machine didn't work on battery power but it was I that was doing something wrong. Yeah right. In the end a respiratory therapist came and Finnian got a machine that works right. So now we can take him out and enjoy the nice weather.

The other fight I had was with good old UPS. The driver rang my bell but didn't say who he was and I did ask 4 times "Who is it?" and the answer he kept giving me was "I told you already" Well tough if you cannot say who you are I am not letting you in to the building. So I ran down stairs and as I got to the front door I saw the UPS truck pull away. So I called and told them that the driver wouldn't identify himself and I didn't let him in but I was waiting for Finnian's meds which get sent next day air and are supposed to be delivered by 10 am. So some one from the local depot called and wanted to know if I wanted to pick it up at the depot. Well hello my van is in the shop and I have know idea how to get there on the bus but I wouldn't be able to pick it up until 8 pm. No way was I going to be jaunting around the Bronx on buses when I had paid for a service. Then he called back and asked if I could meet the driver somewhere yeah right I would show up and he wouldn't be there. So in the end after about 5 phone calls they said it would be delivered later in the evening. The pharmacy called and they were wondering why Finnian's meds had not been delivered so I told them the story he had a good chuckle and said he would also call UPS and complain. Our regular UPS guy showed up with it this evening. He just shook his head over the whole thing and he apologized and he was wondering why they just hadn't given it to him to deliver. Its over and done with for now so I guess I will just have to wait until next month to see if I am going to have problems again.

Got the time for Finnian's tummy tuck on Monday. He is the last surgery so we don't have to be there until 1 pm. He will be kept in about 2 days he is having the nissen fundo done I know I was just joking when I said a tummy tuck.He had a horrible seizure yesterday so the neuro's office called and said to give him an extra .125mg of Klonopin in the afternoon. Got the word to call the neuro surgoen to go and talk about the VNS for Finnian. So I will be calling on Monday to make that appointment. Have to call the movement Doc she is back after having her baby to make an appointment with her on Monday as well.I called and made his eye doc appointment oh crap I forgot to make his ortho follow up appointment so that goes on my to do list on Monday.

So thats it for now

Its been awhile

Well today didn't start out too good. At 6:22am the laundry card machine swallowed my $10 bill and didn't give me the credit on the laundry card. So I didn't get all of my laundry done this morning. But at least I got the towels, socks and knickers done so now at least they have clean towels and clean drawers to wear.

The van went to the garage today for the big repair water pump and timing belt. We got the brakes and the inspection done like 2 weeks ago. So its cost us a bit this last month but at the same time we would be lost with out the van.

You know the new pulse ox machine Finnian got well we discovered it doesn't work on battery power. That really sucks so the most outing we do is around the corner for a quick walk. The heat is getting to poor Finny so it looks like I will have to put the AC on.

We have really had a time with him throwing up and he has lost weight.He was throwing up so much one night I was worried that he would get dehydrated as he wasn't even keeping down ginger ale. The same night he also threw up his meds so you know I didn't sleep at all that night. So when his nurse came in she checked him out and said if he didn't keep his meds down we would be taking a trip to the ER. Thankfully he did keep them down and we didn't have to go. He has had a few bad seizures. The throwing up has finally stopped but now he is sucking back O2. Its seems like if its not one thing its another with him. Over the weekend he had a few low dips in his heart rate they all happened while he was asleep but thankfully the alarm went off to let us know.

Next week he will be going in for his nissen fundo surgery and this will hopefully stop him from throwing up. They might have to change the position of his g-tube but we will have to wait and see. We will have to wait and see if we can get different pain meds for him this time around as it was after he had the hardware taken out of his legs and was taking oxycodine for the pain he started to throw up. not sure if it was the oxy but I would like to try something different for his pain. We go the following week and find out what the neuro surgeons had to say about Finnian getting a VNS or possible Corpus Callosum to help with his seizures.

You know he might be sucking back O2 but he is happy and so responsive to us. He is blowing everyone's minds by answering "Yes" and "No" questions. Today he even signed "eat" so when I asked him " are you hungry?" he signed "yes" back. These are the days we live for the good ones. He even "sang" for me when I played his favourite song. I must get him on video "singing" his way its really cute.

Must go and get the dinner started.