Wednesday, March 2, 2016


I thought we had dodged this bullet

I thought Ryan was "too old" now to develop seizures.

I may have been wrong

2 days ago Ryan came home from school and his bus driver and aide thought he had had a seizure. They found him unresponsive and shaking. He didn't come around for 3-4 mins. I called his doctor and she wanted me to bring him straight to the ER. To check for things that might have caused a seizure ......... dehydration, infection etc. He hasn't been sick recently but had been upset at school all week which is very unlike him. Had he been feeling unwell and we hadn't known? Dam you GATAD2B for making my child non verbal!

After a long wait in the Belfast Royal Childrens Hospital ER we saw the consultant and learnt he didn't have a fever and all his labs looked normal. We took him home and were told to follow up with his pediatrician.

Seizures scare me. I've seen how they can be uncontrollable. I've seen how they can rob a child of their current skills and warrant medicine that can slow or stop the acquisition of new skills. I've seen how they can take a childs life!

I thought we had dodged this bullet

I thought seizures were not known to be related to Ryan's gene mutation, but through Facebook have found out that 5 of the known 20 GATAD2B kids have had seizures.

That's 1 in 4


Not great odds after all

We will know more after we see the neurologist and have an EEG.

Friday, May 22, 2015


When I took off Murphy's blankets after the winter I was horrified with how his coat was shedding, blotchy and bald in parts. The worst I had ever seen him look. I quickly got him on some linseed oil (usually would use flax seed but I cant seem to find that over here and linseed is pretty much the same) and prayed that after the shedding he would be fine. Well out 24/7 for an Irish winter seems to have agreed with him and his coat has come in healthy and beautiful, evidenced by the abundance of dapples which will only come out if the nutrition of the horse is good. For a previous "show" horse, pampered and fussed over for 13 years, to slumming it outside I would say hes looking rather well.  I'm glad I made the decision in December to move him barns. I didn't realise that due to all the rain Ireland gets most barn owners, to protect their fields, keep the horses in all winter over here. Yes, not like in New Jersey where turnout time is severely reduced due to cold, ice and snow, but the horses still get out at least a few hours a day, here they are in a sense on lock down. I just couldn't do that to him! So happy I found this place with huge fields, its very quiet but has the added bonus of only being literally round the corner from my house. I have dreamed of having him this close for years!!

Sunday, April 12, 2015

7! Really ?!?

Happy seventh birthday, Ryan!!!

Wow, so hard to believe you are seven already !!! When did that happen !!! Mum was right, time really does fly by. Well since 7 is a totally momentous birthday (who doesn't remember their 7th birthday?? ) and this year has been a little momentous for all of us also, we decided to throw a pretty big party at the house. The last time we did this was for your 2 year birthday. We missed out on the first birthday party extravaganza as we were both not feeling too well. I was in the emotional throws of developmental delay and you had a 105 degree fever so we pretty much gave it a miss that year and put it off until the next. Truth be told I'm not a big lover of traditional big birthday party's for you. You don't really care about all the stuff other little boys care about like presents and cake and party games and pinatas. You cant really partake in alot of those things in the traditional sense so I cant see having a party for other peoples kids to enjoy. You are more interested in more simple things, being with those that really love you for you, enjoying swings with Daddy, or reading a book with Mummy, puzzles with Granny, or attention hoarding from cousins. So as this was our first year in a new house, new country, we decided to hold a party for family and close friends.  

First thing to do was to get the house ready, or rather tame the garden that had not been looked at all winter. Luckily it was the Easter break in Ireland so my mum was off school and able to lend a helping hand. The garden is definitely looking better, it still has a long way to go but its much much better than when we bought the house after lying empty for a couple of years. We have alot more plans for the outside of the house but we are trying to tackle them in bite size chunks as it just gets too overwhelming otherwise. 

I picked up the cake the day before the party. Shaun the sheep withthe cutest sheep cupcakes. We took Ryan to see the movie about a month ago and he loved it, chuckled the whole way through. 

The day was a great success. Many people from our past and present showed up including a few friends I hadn't seen in 20 years with their kids in tow. I think Ryan enjoyed his day surrounded by love. The only hitch was when I couldn't find the candles! Big mummy fail, but Ryan didn't seem to care.

I tell you this everyday, but I will put it in writing anyway Ryan, - I love you. I love you for the little person you are, not for the little person you might have been. I love caring for you, and making sure your needs are always met. I love taking you to your appointments and making sure you are always well taken care off, and you have a loud voice. I love playing with you, reading with you, lending you my finger, my arms, my strength for however long you need them. If I sometimes seem tired, sad or frustrated, please know that's it not you, its not your fault. You are and will always be my light. 

Saturday, February 28, 2015

Playroom Update

One of the first rooms we needed to complete when we moved into the new house was the playroom. Ryan has no fear of danger so with construction and cleaning going on I needed a room that he would be safe in when we couldn't watch him. 

Here's a reminder of how the room looked when we moved in, complete with alter. The previous tenants for some reason were using this room as a prayer room. We removed the alter, kept the bench, and painted trim and walls white. I decided to go with white walls as I knew there would be alot of color added with Ryan's toys. 

I covered the bench with a cushion. At some point I will add doors to the seat on the bench so we can use the inside for storage. 
Floors were painted with grey floor paint and an Ikea rug was added. 

The Borgsjo bookcase from Ikea was the perfect fit for the corner space, and provides lots of storage, the most important thing in a playroom. 

A chalkboard was added with an Ikea Ribba picture ledge underneath to hold duster etc, this ledge is also sturdy enough for Ryan to pull up to stand on. Ikea Fintorp containers serve great to hold chalk and pens, out of reach from Ryan when alone as he has a habit of writing on the walls. 

On the other wall we have a sturdy Ikea console table. I hope to put some picture frames above this for Ryan's own paintings. 

Sunday, February 22, 2015

Mid Term Break

This week Ryan has been off school for mid term break. Unfortunately we have all been quite sick with flu all week, but by Thursday things were perking up and we needed to get out of the house. We decided to take Ryan to see the movie Shaun the Sheep and he loved it! He belly laughed all the way through. Then Friday night I had a date with Mr Grey, some lovely ladies and a few Mojitos. I wont say too much about the movie but the company was great, and it was nice to get out in Belfast which has changed so much since Ive been away. Its now a truly cosmopolitan city with great restaurants, bars and clubs. Worth a visit for anyone coming to this side of the world. 

Saturday we headed to the Donkey Sanctuary with our friends Lauren and Billy. This is a great charity set outside Belfast that houses many many once abused or neglected donkeys and mules and provides them life long homes. They have a therapy assisted programme for kids with special needs. Kids with disabilites can come and ride the donkeys, ride in a cart or if they prefer simply just love on these adorable creatures. Ryan and Billy had alot of fun. They have a Thursday afternoon slot open for 1:1 therapy and Im thinking of signing Ryan up. Also hard to believe its all FREE, all supplied by kind donations from the public. Head on over to this website if you would like to support this very important charity that directly affects the lives of our children.

Friday, February 13, 2015

Pediatrician appointment and some walking

Today we had Ryans 6 month follow up with the pediatrician here in Northern Ireland. Nothing much to report as thankfully he has been very healthy over the winter, seems the Irish weather agrees with him. We have appointments set or have already seen all the specialists she put us in touch with so all his health issues are being dealt with. Will follow up with her in 1 year. 

After the appointment I heading round to the PT room to sit in on one of his sessions. Heres a short video of how he is doing with his walking. AMAZING!!! His steps are so deliberate and purposeful. In the past he has looked like hes falling forward and gravity has been making the steps out of necessity but here he looks so upright. This child may walk after all. Its been a long road but he is the epitome of NEVER GIVE UP. 


Wednesday, August 20, 2014

Summer review

OK, I'm calling it, Summer is officially over in Northern Ireland. This is how we are dressing at the moment.

Murphy has 2 sheets on and I'm considering the medium weight blanket and its still only AUGUST!! But looking on the bright side it feels like Fall, I love Fall, or Autumn as they call it here. So what did we get up to this short summer

We found a great place to walk Brodie. Hes lost a little pudge and I think Ireland agrees with him. 

As you can see, Brodie had a bit of a shave, Ryan did too, which I always love as you can see his little halo again. I'm not 100% sure why he has this ring of lighter hair but I think it has to do with how high his cystic hygroma came up. Its a little reminder of what a miracle he really is. 

We had another visit from Claire, Greg and the lovely Eva again from Dublin. Had lunch in a little authentic Southern BBQ place in Belfast called Bubbacue, check it out if you are in the area. Loved it. 

We had some PT sessions at the local hospital, Ryan wasn't impressed, but his walking with the walker is getting much better. The district therapists also delivered a stander for the house. His hamstrings are getting tight again and hes staring to crouch when walking. Im hoping the stander helps with the tightness and we are not heading for surgery. We have an appointment with the local orthopedist in the next few months to discuss. This is Ryan's not pleased face while at the hospital.  

Ryan has had a few visits from Gerry from the charity Cedar who comes to do play therapy with him every week. Ryan seems to like the company, and I'm liking the few hours respite he provides. 

We have visited quite a few museums that i remember going to as a kid. Northern Ireland really does have some great touristy things to do that are so enjoyable and educational. 
We visited the Ulster Transport Museum with some friends. 

And the American Folk Museum wit Billy and Lauren

And the Ulster Folk Museum with Granny and Uncle Mickey and Natalie who were over from Huddersfield for a week. 

Granny with a story tellers mask, quite scary

Sampling the soda bread made on the griddle. 

Under the weeping willow
School is always fun!

Weavers cottage

We also checked out the Titanic exhibition. Its a huge draw in Belfast and really worth checking out. Titanic was built in Belfast which once housed the largest shipbuilders yard in the world. Harland and Wolfe's giant cranes Samson and Goliath and still one of the most recognisable parts of our city skyline. 

My sister Brid at the exhibition
 "Belfast is a different city. Once abandoned factories are rebuilt. Former industrial sites are reborn. Visitors come from all over. So to paraphrase Seamus Heaney, it is the manifestation of sheer, bloody genius. This island is now chic." Barack Obama