Learning more

We met again with the consultant neurologist this week. It was helpful for us to ask some of the questions that we were unable to ask last time, so caught up in the emotion of what we had been hearing.

We learned that while a scan clearly shows the part of the brain affected it does not show what level of damage. It might be bruising which will have a much better recovery than cells which are dead. So a significant stroke may not result in long lasting damage and the opposite would seem to be true with a smaller stroke having devastating impact.

The important thing for our consultant was the level of recovery in the first three months. This is the acute recovery phase and the phase they want to see huge progress. While Finlay has made progress they are disappointed that it has not been more. This is what has led them to be more certain that there will be lasting damage. However, the next nine months are also really important because there can be good recovery in the first year. This is what we are working hard for.

In eight to twelve months he will have full neurological and IQ testing. This will determine his level of understanding and will help determine the best strategies to teach him all the different things he will be learning in life.

We were grateful for the time our consultant gave us.

Finlay is making progress and it is good to see. He is now allowing us to hold his right hand and we are looking to see this moving into us being able to do more of the exercise work. He does have more words in his vocabulary. He is only able to use them as single words, no sign of sentences. Sometimes he knows words but he just cannot produce them spontaneously. He needs some help to access them them from his filing system.

This week we have a TAC meeting - Team Around the Child. It brings all the professionals together around a table to discuss how best to meet Finlay's needs in a co-ordinated way.

And the rest of the family? Five more sleeps until the October holidays. We have booked four nights away, just us. How good will that be!!

Would you like to know what I'm thinking?

Do you want to know what I, Finlay, think?

I think there has been a lot of stuff going on lately. I am not too sure about all of that. I do know that I like to have fun and I am full of nonsense, or so I am told.

I am always thinking that having friends around to play is great. Josh came today!

I think that Mickey Mouse is the greatest thing. I have the best CD ever. Mickey Mouse says... "Hiya pal. We've been waiting on you Finlay" and then we all get to sing along to Leader of the Pack. I like it very loud and when I turned it up, it made Josh put his hands over his ears!!



I think I should always get to watch what I want on the TV so Hannah and Fraser watch lots of Mickey Mouse Clubhouse, Peppa Pig and Fireman Sam with me. Murray is not so keen.

I think that playing outside with Jed, in fact playing anywhere with Jed, is great. We like it best when we get to throw water about. Mum says I am full of mischief.

I think a lot of things but sometimes folks do not understand when I tell them all about it. You know, like when we went to the zoo. Mum normally always gets what I am saying but at the zoo she didn't and that makes me quite cross.

I love running around and I do fall over lots, but that is OK. And now I have a cast, but I still run around. I think it was Mums idea to cover the cast with a big sock that has grips at the bottom, stops me sliding. I did try and get the cast off on the way from the appointment when they put it on but now I don't think about it at all. I quickly worked out you can still climb u p the climbing frame with a cast on.

I like to run and keep up with my friends and I like to make a lot of noise. Did I already tell you that already? Josh and I were playing the drums today. We had one stick each which is good cos I just like to use my left hand. Josh used his other hand to block off one of his ears. I was whacking it loud!! My right hand I am not too sure what I think about it. Sometimes I notice that I am holding my right hand and arm up quite high. I am not too sure how that happens but my left hand is very helpful for pushing it back down again.

I think my Mum making cakes is good thing. I like the biggest cake and I am not that happy when Mum says I have to let the visitors have the first choice, and I really do not like when the visitor chooses the biggest cake which I had my eye on. I may not have a lot of words at the moment, but I can let you know what I feel about things.

Mum says I might just be a little "spoiled rotten" or I may be a little frustrated at times by my lack of communication skills, whatever that means. It certainly is fun have lots of attention from lots of different people getting me to do lots of different things.

Whatever, I just think that I like being me!!

Today

When you wake up in the morning and read your specific appointments for the day you know there is stuff going on.

10.30am Hydrotherapy
1.30pm Cast to be fitted
3pm Speech and Languange

But that is OK!!

Some weeks are tougher than others.

We met with Finlay's consultant neurologist this week. It was a difficult appointment for us. She explained to us that Finlay will not recover a full range of movement in his upper or lower limbs. She talked through with us what some of the future implications of this might be.

It came as a shock to us and has hit us hard as a family. There have been tears this week. This news has not changed where we are at now. It has changed, however, where we thought the future may be for Finlay, where we thought we may have been heading with him. And of course there is no clearly defined path here, we know that. Each day has to be walked through and the progress, and possible lack of, will inform us as to what the future will hold.

There are questions that we still need to ask. We are grateful to professionals who work with us, listening and answering wherever possible. Finlay has a wonderful group of therapists who continue to help him progress and make gains in movement and in speech. As a family, with lots of support from friends, we are commited to all the therapy we can do within the rich context of our normal living.

Most importantly to us, we know that while our Drs and therapists are highly skilled they do not have all the answers. Our Heavenly Father does and he is a miracle working God. We trust him and believe that he will work all things to the good for Finlay.

We value your prayers.

Water Therapy

This weekend sees Bruce, Fraser and Murray take to the water, piling tents and supplies into their canoes. Think Swallow and Amazons for those of you old enough to remember and you have got it. If you are around the Loch Lomond area give us a wave. Kirsty, Hannah and Finlay are off to stay the night with friends in Edinburgh, probably the drier option!!

Finlay had his own water adventure this week with another session in the hydrotherapy pool with the physios. These sessions are real beneficial as the water induces real good muscle tone and allows really effective exercising. There is a question just now hanging over putting his foot in a cast. The decision to be made by the orthopaedic surgeon and the physios is whether what he gains from his sessions in the pool is greater than the stretch his muscles would get from the cast.
The physio team continue to be concerned over his unwillingness to use his right hand at any time. It does not appear to be painful to use but it may be that a pins and needles sensation is causing discomfort. We continue to do some exercise to stretch the muscles while he is sleeping. His physios are seeking advice from others who may have experience in this field. Children having a stroke is mercifully uncommon but that does mean that we are travelling down a path with a lot of unknowns.

Speech and Language sessions have continued this week. It is encouraging to see that Finlay is beginning to copy back if you say words clearly to him. He is still using a small number of spontaneous words, with "please" and "sorry" continuing to be the the most used! He thoroughly enjoyed another three afternoons at nursery this week, loving the fun with the other children and benefiting from all the stimulus.

It just so happened this week that we had a whole day free of appointments and happenings so Finlay and his wee pal Jed, accompanied by both Mums, headed out for a few hours of adventure in a big park, everyone enjoying some time out.

This week coming sees all the normal routine for us of appointments, clubs, meetings, school and nursery. Finlay also has his six week appointment with the consultant neurologist. It will be good to hear her assessment of his progress and get her input into therapies.

We are grateful to so many of you who continue to support us, sending messages of encouragement and praying hard for Finlay.