Fionn's SDR Journey

Status updated: 27th Jan, 2019

Status updated: 24th Jan, 2019

Earlier this week we got Fionns Gait Analysis report back from the CRC. Loads of measurements and loads of jargon that needs decoding - lots of googling definitions to make sense of it all!

First of all, Fionn has been given a Gross Motor Function Classification System score of 2. (GMFCS is used to grade CP patients and their range of voluntary movements. It ranges from 1 - 5, the higher the score, the more severe the CP is.)

A curve was observed in Fionn's spine as he stood, and they noted that he has postural scoliosis. It's correctable on flexion , so he is able to straighten it out. It's due to the fact he has a leg length discrepancy and his hips are uneven.

Lastly, Fionns diagnosis was changed to asymmetrical diplegia. A few months ago we noticed his right leg (the 'good' one!) was becoming a bit tight We got it looked at by physio, did stretches etc but weren't overly concerned. We had agreed it was probably just compensation. However during the gait analysis all the measurements and tests showed that he has also got spasticity in that leg. From looking and feeling that leg, it looks like his left leg did 18 mths or 2 yrs ago. (That's just our opinion!)

It's hard seeing it all on paper, level 2 diplegia and postural scoliosis. But Fionn hasn't changed or suddenly got worse, they are just names and points on a graph. His spirits are high (most of the time!!) and he'll keep working hard no doubt.

#FIonnsSDRjourney #CPwarrior

Status updated: 23rd Jan, 2019

The Sound of Unity supporting The Jack and Jill foundation, The Irish Heart Foundation, LARCC, North Westmeath Hospice, Fionn’s SDR Journey, Tanzanian Heavenly Homes and Good2talk.

Tickets selling fast so don't miss out !!!

Status updated: 12th Jan, 2019

Every time we get Fionn new shoes we end up getting 2 pairs of the same - one in his normal size which he can use for his right foot, and another a size or 2 bigger for his left foot to fit his AFO.
Well we had a breakthrough today! We managed to find a deep and wide shoe with a nice thick removable insole which opens down far enough to slide the AFO in. I only had to buy his normal size, and the removable insole adds loads of extra room for his AFO. 🙌 Thanks to Swarbrigg Shoes for all their help today.
#GEOX #littlevictories #FionnsSDRjourney

Status updated: 12th Jan, 2019

Hey, I don't normally post on Fionn's page apart from a comment now and then. Fionn has had a very busy week, Monday he was back to school after his Christmas Hols and mid morning he had to go to Crumlin Children's Hospital for a check up, which went very well. He did all his excercises and the Staff were very impressed with him.On Tuesday he struggled to get down the stairs, but he managed, and went to school without a complaint, even though his little legs were still tired. Wednesday he was better. On Thursday I went to CRC Clontarf with them and it as a real eye opener for me, Fionn's appointment was for Gait analysis which was a 2 hr stint. The1st hour was with 1 physio in which he did all his excercises barefoot and was all on video. The 2nd hr was with 2 physio's and also he was connected to wires and gel pads on his lower body which recorded him naturally and also through the wires he wore to show the movement of his little muscles.Some of the excercises really took it out of him. He did everything asked of him, was pulled and dragged on the bed, and some things they did with his little legs just had to hurt and he did struggle to do them but he did it all.He never complained or said a word through it all. He was told to wear shorts and during the recordings not to wear a top but he wore his Raharney jersey and shorts and told the physio's all about u6 Hurling and getting a draw in the blitz. He also told them he plays tennis and "might" go back to swimming... they were very impressed! He never complained, never gave out and was so good all through it. It really gave me an insight into Fionn's everyday life, and its something he knows no different of. We always know of the appointments etc but this was only my 2nd app to go to and it just makes us more determined than ever to get Fionn to US.A.to have his surgery. Fionn deserves a normal child's life of no appointments, no OT, no physio, no hospital, no clinic, no CRC , no boot and NO PAIN!!. Fionn, you are a little super hero and we are so proud of you every day and we will fix this xxx.