Monthly Archives: September 2015

Peekaboo! 

Unable to open his eyes but this amazing sausage can play peekaboo!  

One day post surgery. 

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Reunited

After what felt like an eternity, a couple of phone calls to our parents, lots of crying and sobbing in total despair we were finally reunited at 0020. 15 hours after we held him to sleep. 

Yesterday took about 10 hours longer than we anticipated. Reedy was taken for a MRI scan which took hours longer than planned this made the surgery later starting. Although no major complications, one blood transfusion, it was trickier than the surgeon said and thought it would to have been. 

As time ‘on the table’ goes on the scan images are not as accurate because of the swelling etc so although they have done extensive disconnection they have not completed the planned operation. 

This means that the chances of seizure freedom are slightly reduced, but this may be enough to stop them. Time will be our only indicator. There was brief talk that he may have to have further surgery in the future. 

One nurse who had “popped into theatres” came to give us an update: when we said “he is handsome isn’t he” she replied “well I cannot see him due to the drapes, but I could see his brain throbbing nicely on screen!” Not sure I ever thought I would have that convo! 

Thankfully he is safe and back with us, our co-sleeping practice is paying off as this seems to be the best way to calm him down. 

Reedy has been very distressed, pulling out most lines that were in place, two bed changes and a little sedative to assist him to sleep and rest, we have made it through the night. 

Some key things have already happened that indicate a positive outcome, he is moving all of his body, imagine thrashing octopus! He has shaken his head to say no! He pointed to us, held a bottle and he found his dummy and put it in his mouth. All very positive signs. 

Today we will mostly stay in our pjs on HDU attempting to catch up on some sleep. 

Reedy will go for a CT scan and have some bloods taken to check that there is nothing sinister going on. 

Better get back to cuddle duty… X 

 

While we wait….

well the day has arrived, that in all honesty we never thought would nor would wish on anyone.

Surgery day, where they are currently disconnecting and removing the posterior lobes on Reeds left hemisphere. 

We all slept in together last night and had a very calm cuddling morning. 

   
 
We spoke to the anaesthetist and in true Berryman style had an awkward, Ryan’s in the shower with the door open panic! 

She explained what they will do and that she would be with him all day. The larger than life surgeon came to talk through the procedure, risks and prognosis, all the while Reedy was climbing the window sil. So was a mix of trying to listen and avoiding head injury! 

  
We are currently sat in a zombie like state in Marks and Bencers (as Annabelle calls it) trying to keep our tears inside us, a few keep escaping. 

Stepping outside the bubble.

We are very lucky that Reedy and Annabelle have some amazing friends so by default we do too! 

Our bubble includes: The boobers, friends, family and supportive playgroups. All of whom understanding and gracious when we arrive, will our fun, vibrant, determined and loud children! 

  
They know that when Annabelle is playing up its normally because we haven’t slept well or that she is overwhelmed by the upheaval that she has experienced meanwhile being 3 and trying to cope with all the feelings of growing up and learning how to express herself. 

They know that when Reedy is loud and screaming it’s because he has glue ear needing gromits at some point, they know that although he is physically very capable that his understanding is not as developed as he looks, they know that when he looks at his hand funny or stares off to space he is having some seizure activity and that he will probably need a lie down. Familiar playgroups move toys and furniture to get his pram in.

They know (I think) that for as long as they have known me that I suffer terribly with anxiety and although I look strong I panic regularly. Mostly irrationally but I panic! Not so much when I am around the safety of my bubble but definitely in new places with new people. 

Hidden illnesses are so challenging and can sometimes stop us or cut short new experiences. We have regularly left a playgroup or museum or restaurant prior to wanting to because I have gotten overwhelmed and feeling judged by onlookers from the outside!

Think I should take a leaf out of the children’s book and just be confident and unaltered. The bubble is lovely a safe but occasional departure will get easier over time. Wish us luck!