part 26, rewiring

I was really at an all time low, especially since St Patricks Day. You see I can go out start a new business, all the effort and energy we put in to decorating the premises, planning activities and all that we’ve done, I see the results; they stare at me in bright lime, deep purple and WHITE colours. I see the work we have all put in, I see how successful we where at creating it, I see the results. I do the same with my children yet I rarely see the results when it comes to Mr fabulous.

I was so upset as Mr fabulous is amazing, he is everything a mother dreams of in a child, handsome, happy, strong, affectionate all of this, yet he seems to stay at a level for such a long time, progression is not something that comes easy for Mr fabulous, it’s a snails pace progression, this upsets me as all the work, effort and time everyone to do with Mr fabulous puts in, it’s still not enough to speed things along, it stays at a pace that drives me bonkers.

I remember after Mr fabulous’s first ever seizure seeing huge immediate improvements in Mr fabulouss intellectual development. His eye contact improved, his receptive language skills improved, he vocalised more all of this but yet I taught it was coincidence, and how could something so horrid actually benefit a small child.

I remember thinking another time that Mr fabulous must have had a seizure as something was not right when I found him in the morning, but he must have been well over the seizure as very little evidence he had one, again, improvements, major ones.

This seizure just gone, I knew for definite that these seizures are like a rewiring job on Mr fabulouss brain as the huge improvements where not only visible to me, but to all who know and work with him. He’s like a different child, he seeks interaction and seeks kisses and cuddles. He is flying with P.E.C.S exchanges for everything, food, toys, everything. He is more tolerant THANK GOD of his brother and his mental tone of squeals, crying and laughing. He is trying different food textures, he is trying to do so much more for himself, his vocalising and interest in vocal sounds is really a huge thing, he now puts his hand on your lips and throat to feel the vibrations when you sing, he is just a different child.

It is so strange how our bodies work. A seizure is such a traumatic, frightening and heart stopping event and yet it is doing my son the world of good. I will never understand this and I still would never wish another seizure on my son but im not so frightened of them any more, im comfortable knowing that it is in a strange way helping him and not harming him at all.

I was so proud and happy to watch him playing with my friend Rachel the other night. He gave kisses, cuddles, and interacted with her for ages, he gave her amazing eye contact, he has known Rachel for 2 years and she would never pass by him and not greet him, yet she knew she would never be greeted back, and now he’s on her lap cuddling, looking for tickles and shock of all shock, he allowed her to squeeze his HEAD, this was never allowed by anyone but me and his OT, he requested her to squeeze his head. I was gob smacked. This was huge.

Im so happy that Mr fabulous is coming on so well, I’ve been waiting for this type of progress for a very long time, we all have. He has his EEG in May and I cannot wait to ask some questions and hopefully have a better answer to what is actually going on with him. Fingers crossed all goes well and remains to go well.

7 comments:

Sandra M said...

That is absolutely FANTASTIC - I couldn't be happier for you both xxxxxxx

March 26, 2010 2:48 PM

Jean said...

it's great that Mr fabulous is getting on better with his baby brother, and I completely empathise at your frustration over the slow progress.

Finian has bursts of development and then plateaus for months. We've got used to this pattern, but sometimes we'd love a bit of steady progress.

Re the seizures and his apparent improvements, it'll be very interesting to see what the neuro boffins have to say about it xxx

March 26, 2010 3:08 PM

lastofthemojitos said...

Well done Mr fabulous! It must be awful for you to have to watch him have seizures, it must be so scary as a mam but I'm glad he's doing well x

March 26, 2010 4:03 PM

Looking for Blue Scrazy jane said...

I so hope that this is the start of a much brighter future for Mr fabulous. I know how heart-breaking it is when your child doesn't seem to be progressing. xxx

March 27, 2010 3:25 AM

Jen said...

I am so glad you reposted this, I was away for the weekend and missed it and am kicking myself because this is such fantastic news :D:D:D I am absolutely delighted. The seizures are scary, you have mentioned them before. It will be interesting to see about the EEG and what the Dr.s have to say about it, but for now WOW!! Jen.

March 31, 2010 6:18 AM

claireh said.
I dont know how i missed this before. great blog maddy. Im so thrilled mr fabulous is doing so fantastic, I hope they can explain some stuff at the eeg. Fair play to him for coming on so great after a seizure. they have the opposite affect on me and it takes me days to recover.

Im not surprised youve been feeling down. You have taken on so much, you do so much for everyone else but you need to look after yourself too.

Your a fantastic lady, mother and friend and your a real inspiration

xx

April 8, 2010 2:47 PM

Petunia said...

I'm only seeing this post now Maddy and hope you are feeling a little better now. You have a huge amount on your plate and I seriously don't know how you do so much! Thats fantastic that you have seen so much improvement since the seizures! I'm really interested to see what the EEG shows up and what the doctors say xxx

April 10, 2010 4:20 PM