This past month or so has been a bag of dolly mixtures. Some good days, some amazing, some bad and some truly terrifying. We’ve had a few A & E trips, a ward visit (thank you ward 48 for the lovely Easter Eggs) and two failed driving tests (third time lucky!).
Firstly the epilepsy..
Jenna's seizures remain to be our main concern. The current drugs, Topiromate and Clobazam are working to help Jenna come out of a seizure on her own. However sadly she still has 15-20 seizures a day.
On the 18th March we set of to the neurologist clinic with no questions (as my mum might tell you I usually have a list – be prepared and all that). But nothing this time. I felt terrible thinking about it on the bus but after trying the majority of the drugs I honestly didn’t know what they could do next.
We are very lucky we have a straight talking no nonsense neurologist. We agreed that our next option after all these drugs is to seriously consider surgery. This is where they remove the part of her brain that has Polymicrogyria and is causing the seizures. I was told in December that this maybe an option if the drugs didn't work. So, knowing they haven't I wasn't surprised when our neurologist said it’s our next step. The chance that she’s a candidate are very slim and the thought of having to sit there whilst they remove part of her brain is unbearable to think about. But it is likely to be less life threatening that living with this number of seizures for the rest of her life. It can take up to two years to complete the assessment but I’ve every faith in our neurologist that we’ll know by the end of the year. We’re back at the clinic a week on Friday and I’ve a list of questions swirling round in my head that I need to write down. I’ll keep you up to date with how it goes.
On the 18th March we set of to the neurologist clinic with no questions (as my mum might tell you I usually have a list – be prepared and all that). But nothing this time. I felt terrible thinking about it on the bus but after trying the majority of the drugs I honestly didn’t know what they could do next.
We are very lucky we have a straight talking no nonsense neurologist. We agreed that our next option after all these drugs is to seriously consider surgery. This is where they remove the part of her brain that has Polymicrogyria and is causing the seizures. I was told in December that this maybe an option if the drugs didn't work. So, knowing they haven't I wasn't surprised when our neurologist said it’s our next step. The chance that she’s a candidate are very slim and the thought of having to sit there whilst they remove part of her brain is unbearable to think about. But it is likely to be less life threatening that living with this number of seizures for the rest of her life. It can take up to two years to complete the assessment but I’ve every faith in our neurologist that we’ll know by the end of the year. We’re back at the clinic a week on Friday and I’ve a list of questions swirling round in my head that I need to write down. I’ll keep you up to date with how it goes.
Now I know everybody has a happy dance, even Jenna! – so, please if you will do it as you read the next section…
Happy dance :-) – nursing!
I’ve been trying since Christmas to get Jenna registered with Leeds City Council disabilities social care team. From what I’d read they should advise me on what’s available for Jenna and make a referal to the community nursing team for respite a few hours a week. In theory this sounds simple. In reality it took four months, twenty plus phone calls, a bit of crying, a lot of counting to ten and biting my tongue, then a well-deserved complaint letter and wham bam and thank you the team manager came to visit me. She told me that Jenna is TOO sick for the social care respite team and would require a community nursing (NHS) assessment (which it what i origionally asked for. So, five weeks after meeting the nurses I’ve just had my third night of continuing care. I’m smiling as I write this – basically three nights a week a fully qualified nurse comes to our home to care for Jenna whilst I rest/sleep. I’m not naive to think that Jenna’s will be well every night or that her seizures will stop. But knowing somebody is there a few nights a week to watch her means that if one of her night seizures develops and she’s dangerously ill somebody can act on it straight away. Also, when it's just the two of us I'm better rested to stay awake and watch her.
Happy dance :-) - Mummy I can see lights and follow them
As I’ve mentioned before Jenna’s Polymicrogyria affects her ability to process what her eyes see. This isn’t something that can grow back or be reassigned to another part of her brain. In January we registered her having total sight loss and she only occasionally reacted to shining lights. Every few weeks a visual impairment teacher comes for an hour’s home visit to assess Jenna. She also shows me thing to do with Jenna to give her the opportunity to use her vision. So, about four weeks ago I noticed she was following light more frequently. Then one day she followed a toy I moved from her right side to the left. Super excited when we went to the eye specialist at Jimmy’s, they tested her and confirmed that Jenna has developed some slight connections on the brain stems between her right eye and occipital lobe that interprets what she sees. The left is still totally blind but bugger it – if it’s one we’ve got that that’s all we need. To have it confirmed that your daughter is starting to recognise more lights and following objects is one of the best feelings.
Happy dance :-) – team assessment booked!
The majority of parents with children with development delays, long term conditions or multiple disabilities have to go through a NHS team assessment. This is where the community paediatrician writes to all the therapists and professionals involved (play, occupational, eyes, ears, physio etc) and requests an individual assessment, backed up by a report. Then everyone gets together to discuss a therapy plan. When we first met the paediatrician she felt Jenna would need an assessment ASAP but the waiting lists were long so it could be eight months. Thankfully after a bit of pushing, and the need to get the surgery assessment completed the specialists have pulled together and agreed to meet in June.
One thing I’ve learnt that I think will stay with me forever is that success comes through persistence, faith, patience and a little bit of heart ache.
I've posted some new pictures on here showing how much she's developing and growing. Jenna is one super happy, friendly and sociable baby. I managed to find a fantastic private physio who's been helping her develop her muscle control. Daily therapy + Jenna's positive attutude = a very proud mummy :-)
Happiness is our only option :-)
I've posted some new pictures on here showing how much she's developing and growing. Jenna is one super happy, friendly and sociable baby. I managed to find a fantastic private physio who's been helping her develop her muscle control. Daily therapy + Jenna's positive attutude = a very proud mummy :-)
Happiness is our only option :-)