Family life has been moving swiftly along at a pace akin to what some days feels like a long distance endurance event. The pace must continue at a relatively fast clip, however, along the way there are rivers to cross, hills to climb and skate down the other side of, gaps to bridge and all this whilst carrying out two full-time jobs, a raft of therapist appointments, parent teacher interviews (at the tender age of three and three-quarters) and the niggling issue of continued question marks around Ira’s raised optic nerves.
To cover that one off first, the recent update is: after being called into a meeting with Ira’s Cranial Facial and Neurosurgeons, the query remains as to what is causing his nerves to appear so raised. The understanding from neuro is that all his MRIs look fine and we ourselves got to look at the images- his surgeons are happy with the space around his brain and that everything appears as it should. The concern for them therefore, is why his optic nerves are raised (which would indicate there is pressure on the nerves themselves). He does have mild Papilledema which in simpler terms means the nerves appear raised and the edges themselves are not clearly defined. Whilst Ira’s edges are not significantly fuzzy, they are a little blurry and that coupled with the fact that they appear to come forward at you whilst looking through the eye, is enough for a diagnosis of mild Papilledema.
Accordingly, what our Neurosurgeon has suggested is that he inserts (for the second time in Ira’s life) a probe into his head to measure the level of ICP (intracranial pressure). This will have to stay in for at least 48 hours if not 72, in order to give a good reading of the level of pressure inside his head. There is an ideal range of numbers that we are hoping to see and this sits between 5 or 7 to about 15 or 19 max. It was explained however, that if you were to sneeze, the level would shoot up to around the 60 mark. This is why we have to leave the probe in for as long as possible to get a really good average reading.
This means another surgery and general anaesthetic of course, although we hope that it is not too intrusive when compared to what Ira has been through to date.
We are bit concerned about how to keep him occupied for three or four days in hospital with this probe in his head and that he doesn’t yank it out! I think, he can move around, as there is no way we would be able to keep him in bed (when not actually sick) for three days.
Once we get a reading on this, his surgeons will then at least know and have a proper gauge on the actual pressure inside his head. It will then be time to discuss next steps. He has not yet had his sleep study but they consider that the probe monitor is more important at this stage. It could be that he is struggling more than he should with air -which could also be increasing the pressure in his head and behind his eyes.
So enough about the yucky stuff, aside from the concern this is causing to the parents, Ira has been making huge progress and we can tell that he is now developing and learning at a steady rate. One issue I have been quite concerned about is the fact that he still hasn’t walked on his own at 20 months. He has had some longer setbacks than other kids in terms of the time that it has taken him to get over his surgeries and syndactyly releases, however, I wonder about this delay being potentially linked to anything go on in his head. Hopefully he will prove us all wrong and start walking very shortly.
Edie started dance classes this Saturday with her friend Jemima and has not stopped talking about it since yesterday. The first thing she asked this morning was whether or not it was dance class today. It is hilarious to watch a group of 8 or 9 three and four year olds in pink tutus all seriously committed to the lesson. It is without doubt one of the most fun things I have done in a while.
We have some birthdays coming up. Edie’s in June, Benj’s 40th in July and Ira’s 2nd birthday in August. These will be busy months particularly planning the 40th! Ira’s 2nd birthday I feel, should be marked with a degree of over-the-topness to celebrate this little boy’s unfailing tolerance of people poking and prodding him at the expense of just being left to be a little boy. I feel like throwing him a party which includes elephants, clowns, pirate cats and candy floss. (Perhaps this is just what the parents feel they deserve!). Maybe 2 is a bit young to appreciate this level of commitment!
With being so busy at work, life is indeed set at a cracking pace for us all, but we wouldn’t have it any other way. We are lucky to have four therapists who call on Ira either weekly or fortnightly-they include an OT, a PT, a Neuro Development Therapist and a Speech and Language Therapist. I’ve said it before, but we are also unbelievably blessed with a beautiful big family to help and share the load. Grandma and Grandpa Berryman live and breathe the ups n downs, Uncle Stephen and Aunty Sarah help in infinite ways and Gael and Poppa are on the other end of the phone encouraging and lightening the load. Ira also has an amazing nanny for 3 days a week who loves him to bits.
Right, time to get back to the race, we’ll update with news on the ICP levels in a couple of weeks after we get through the three or four day ordeal.
One final note, I’m dictating this at work on ANZAC day (having naughtily fled the family for a couple of hours to make a head start on the week’s work). I was saddened to hear about a helicopter crash which has killed three people. The helicopter was on its way to do a fly over in Wellington at the Dawn Service to commemorate our Allied forces commitment at Gallipoli. Although, personally, I do not have strong connection to any World War veterans, as I heard this on the news, I couldn’t help but feel the tight knot in my throat and my eyes begin to mist over. The tragedy itself so very sad and the thought of the sheer number of young men killed so many years ago leaving behind partners, children, parents, futures – all in the name of duty. There is of course a huge honour bestowed upon these thousands of men (and their families) but the fact remains that their deaths were far too soon and the lives lost, such a crying shame. Our thoughts and prayers are with these people and their loved ones on this day.