A new chapter begins: Watch me mummy

Time seems to have flown by since my last post.

For a while I've been trying to think of a way of updating our blog without writing a short novel. There seems to be so much to say. Then, I remembered a short slide show I'd seen online when Jenna was first diagnosed (the time when I spent every minute searching the web for answers/info).

So, after discussing it with Jenna we decided this would be the best way. Just before you watch it you have to know I LOVE boasting about Jenna. I've learnt to love, appreciate and celebrate every step she has made. From arching her eye brows at 6 months to show she's happy with my cd choice, to taking things off the conveyor belt at the supermarket (last weeks shopping trip - one of best moments of my life).

If I could summaries the past six months with what you need to know here goes: In December Jenna had major brain surgery to help stop her seizures. It didn't stopped them. BUT it did change her life. The baby with the rare malformed brain, with no head control a year ago, who'd been told would severely struggle to have any physical, communication, visual and cognitive development can crawl (in her own fashion), babble, play with her ipad, clap and mostly importantly has created for herself a new chapter in life...

...."watch me mummy (Youtube link)".

One year on

It’s been too long since I last posted on here. Sort of like when you’re supposed to phone someone back and you leave it so long you’re too embarrassed to do it. 

So where are we. Well we’re now one year into our family life and it’s the best thing I’ve ever done. In so many ways Jenna coming along saved me and gave me a life I never knew existed. Of course I never expected to be a single parent caring for a child with additional needs. But, then again I never expected to be this happy, to love someone unconditionally and do things for them without wanting or expecting anything in return.  

About six or seven months ago we visited the Mencap family centre. The reason for the visit was to put our name down on their waiting list for both of us to attend one day a week. Whilst there I met another mum and her little boy who coincidentally live a few doors down from me. We swapped numbers and have been meeting up every few weeks. Over the past few months I successfully (to a degree) managed to organise and co-ordinate our therapists and draw up a manageable therapy routine for me and Jenna at home. Meeting this mum who’s pretty chilled gave me my first insight into family life with therapies, appointments, trips to the park, going out for dinner and everything else families do. I’m grateful for this. Then, out of the blue a few weeks ago we got the call to say we had a place at the nursery and could start a week later. When an AMAZING place, there’s a large playroom, specialist play workers, a sensory room and parent’s room. All of which wipe the floor with some of the private nurseries I visited before Jenna was born. So now one day a week Jenna goes to nursery and I gossip with the other mum’s and occasionally peer round the door to check everything’s ok. 

Another amazing thing that’s happen to us recently was our stay at Martin House, a hospice/respite centre in North Yorkshire. 

There’s a bit of background to this visit so please bear with me....

It started months ago when we were assessed for nursing respite at home. During the assessment our nurse recommended a referral for Martin House. She explained that they are a hospice that also provides respite care for children with complex health problems. She also said that because of my heart condition we’d almost certainly qualify to go (believe me it’s hard, I know a few mums who don’t qualify and I think they’d definitely benefit). 

A few months later we went to visit, and although it was daunting (I couldn’t help but think of it as a hospice) the facilities were great and the people were so kind and friendly. Before leaving we booked to go in July (we’re entitled to about three stays a year for a few days at a time). 

July came round and little miss picked up a virus and ended up in hospital so we had to rearrange. Last week a few days before our rearranged stay little miss picked up another bad virus. So, back on the ward I sadly prepared myself for the phone call to cancel our stay. Then, our neurologist came to see us. Maybe because I looked plane rough or maybe she just felt particularly kind but for some reason she took pity on us and negotiated with Martin House for us to go, as planned but on the condition that Jenna stay in her room.

So, we went and it was AMAZING. Jenna had music therapy, sang, played, recovered, smiled, met lady gaga the goose, stroked a turkey and stuffed her face with chocolate cake and custard. I just chilled, slept and enjoyed watching Jenna have an amazing time.

I will always be grateful for our first stay. It gave me a little time to reflect on the past year and how far we’ve come. Yes, I’m scared day and night for Jenna’s health. But, that isn’t all of who we are. One year on I’ve realised we’re two very lucky ladies with an amazing family, lifelong friends, new friends, support and a hell of a lot of living to do xxx

Wow, where to begin.

It usually takes me a few attempts at writing a post before I actually start typing. Not because I don’t have anything to say, but usually because I have no idea where to begin.  In the past month or so we’ve started more therapies, celebrated a few birthdays, booked a stay at Martin House, celebrated the Little Hiccups second birthday, passed a driving test and bought a car (YIPEE!!!!!!!!!)

This week our magical mystery tour has also taken a new path.

Surgery

Jenna’s neurologists completed a surgery assessment and near enough confirmed that her brain malformation looks to be highly likely located on one side of her brain. They also confirmed that the tests suggest it’s highly likely that this one malformed area is causing her seizures.

This is big.

So big, that if they remove the malformed seizure causing area and its successful Jenna could live a life without fitting 15+ times a day. Yes, she’ll always have additional needs, with no or very limited sight and there may even be some more physical and/or behavioural diagnosis. BUT Jenna minus seizures means she’ll have a life with more freedom, less abnormal activity and a greater chance to develop and be the person SHE wants to be.

Tomorrow I’ll hear from the neurologist who will hopefully update me on the team’s final decision and give me a date to meet the neurosurgeon. Then it’s a case of talking through the evidence,  organising when she’ll be admitted and plan for a few years intensive rehabilitation.

I have a funny feeling that over the next few years things may get harder before the get better. I don’t mean this to sounds grim in any way whatsoever. You have to understand that I have one hell of a little fighter. Honestly almost 90% of people we meet are shocked by Jenna’s attitude. For example, in March this year she could hardly hold her head up. Now after a few hours of physio every other day she’s sitting perfectly on her own, with a little help pushing herself up, rolling over and given any opportunity trying her hardest to chew her big toe! One thing I’m most proud of is her perseverance to keep trying to find things. With some stimulation, Sargent Mummy’s encouragement and a lot of praise she’s reaching and finding. In my opinion without sight  this must be pretty scary.

Another thing I’m proud of a most grateful for are our family and friends. They say you know who your true friends are when things get tough. The amount I’ve put on their shoulder is unbelievable. I dared not admit to myself that it’s probably too much. Thank you is not enough for these people.

Thank you to my mum who gives up as much time as I need to listen, be there and teach me how to laugh. Thank you to my dad, the one man in Jenna’s life who she can trust and who’ll never let her down. Thank you to my brother (and Ruby Lou’s giggles) who often keeps my feet on the ground and who I admire so much. Thank you to my nan, uncle Pete and his ever extending clan – I nearly forgot how important your family is to us.

 And a huge thank you to my girlfriends. The family are stuck with us, bound by blood, guilt trips (mum), weddings etc. You’re not, but yet you’re there, to listen, gossip, visit, laugh with, share problems, send beautiful gifts from half way round the world, get dressed up with and drag me out each visit for a girls night. I couldn’t wish for better girlfriends, thank you.

A bag of dolly mixtures

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 18^th 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 :-)

Keeping positive

Thank you

Firstly I’d like to say a huge thank you to everybody for their lovely comments about this blog. I posted it on facebook and have had the most amazing response from people. I was a bit weary of publishing it but after receiving a lovely message from my friend at work Elisha I took the plunge and posted it as my status. Thank you everyone xxx

Jenna had a bad reaction to her jabs this week and has been on baby medicine (calpol) for a few days. I was really worried it would make her seizures worse, thankfully they’ve stayed the same J To try and make the most of being indoors, we’ve been catching up on sleep, playing and chatting. The sleep has been amazing, after months of 3-5 hours a night I slept for 8 hours the other day. I’m not sure if Jenna slept through too or if I just didn’t wake up. Either way I thanked God we both slept and were well in the morning.  It seems the rest and Capol are working so hopefully she’s on the mend. 

Another positive…

drum roll please…..

i passed my theory test (yippee!).  So to anybody worried about another learner driving on the roads I’m a little safer now :-)

I also learnt and important lesson about patience this week.

One thing my dad taught me as a child was to look people in the eye when speaking to them. So every day for the past 25 years I’ve tried to engage with people by keeping eye contact during a conversation. Before she was born I was like most people and never really communicated with somebody with major sight problems. 

So, over the past few weeks I’ve been trying to come to terms with not having that eye communication with Jenna.

How do I help her learn new things if she can not see them?? Am I doing the right things?? How do I spot this affect her self esteem as she get older?? etc etc.

Thankfully Janet, our visual impairment teacher visited this week. Her main priorities are to assess how Jenna uses her sight and help her to use her sight to play and communicate. She was fab, she explained that even though I may not see an initial or even obvious reaction from Jenna it doesn’t mean to say there isn’t one. Things take time, practice and patience. So repeating something over and over, day after day may at times seem boring, they’re not. Somewhere (we hope) dots are connecting and over time we should see some indication from Jenna that she’s enjoying herself and using her sight to her potential. She also reassured me that we should keep on playing with the sensory toys, explaining  things and utilising her other senses from an early age. On top of this Jenna followed a reflected light up and down with her pupils. I was so happy. She worked so hard to do it, I’m super proud!

To top all that off as I’ve been sat writing this little miss Jenna has talked all the way through, chatter, chatter, chatter. She knows I’m writing about her and wants to give her input. I’ve tried explaining to her it’s bedtime but she’s been having none of it. She has however managed to wriggle from one side of the cot to the other, so I’d best go before she starts eating the sides.

Take care xxx

It's a learning curve

I thought I'd learnt a lot about life growing up when my dad was ill, getting to, and finishing uni and working my way into a job I like. What I didn't realise was that you never ever ever stop learning.

Not just because you want to, but because you have to. To keep sane, cope and move on, you have to learn to adapt, change and take on new challenges. In the past year I've learn how to be on my own, keep calm, ask for help, give medicines (without panicking every time that I’m doing it wrong), negotiate with medical professionals and family and balance between being nice/pushy and out right annoying.

And now.....

.....well now I'm learning to drive. If there's one thing I could kick myself for, that's not learning to drive before now. Anybody out there who hasn't learnt yet and doesn't have any major responsibility yet - learn now! Honestly I'm so excited that one day I'll be able to pack up our things, shove them in a boot (instead of under the pram) and set off anywhere we want (without having to plan a major bus route across the city or rely on others for lift offers).

I can not wait :-)

The main thing standing between me and that dream is actually learning. I've had 5 hours so far and I'm doing ok, but it's tiring after 2 hours and I leave wondering what I've learnt. I want to record my instructor and repeat what he's saying 24/7. I'm writing this to take a break from revising for my theory test next week (fingers and toes crossed please). If I pass I’ll be able to book 8 lessons over 2 weeks which should help speed things up and get Jenna and I out and about J
Talking of the little madam, she’s just woken up and is blowing raspberry’s. She learnt to blow bubbles this week and giggle. I'm so pleased with how she’s come along this week, my brother keeps reminding me to push her more and more. He’s right and I hope the the child development and visual impairment specialists will teach me more way to help stimulate her development.
Right then I’d best go as it’s supper time, take care xxx

A beautiful poem

We've been visiting my dad, brother and neice this weekend which has been great. I know Manchester's not that much different to Leeds (and I love Leeds) but sometimes a change of scenery does you the world of good. I'm a member of a forum for Polymicrogyria (PMG) and read this peom. For anybody curious to know what it's like to discover that your child has extra needs here's a good way of describing it....

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.   

Take care xxxx