I have a 2 year old!

My baby girl celebrated her second birthday last Friday.  She had a blast.  She got tons of presents from everybody who loves her (and thats alot of people!) and she hasn't wanted to leave the house since because she wants to play with all her new toys.  Me and her Daddy took her to Adventure Island which she really enjoyed, then back to our house for a tea party for Caitlin.  She lapped up all the attention and was so excited that her birthday ended with her two favourite big cousins staying over.  It was a special day, full of laughter and love.  She went to bed a very tired but very happy 2 year old!

Some pics from the day....

Caitlin's presents from me and her Daddy,

The easel was a last minute impulse buy.  She's still a bit small for it, but I figure it's a good toy for her to practise her standing, and she'll get taller!

The amazing cake.  I was so pleased with this.  My friend from work's mum makes cakes so I got one specially made for Caitlin with her favourite character's Peppa, George, Ben and Holly and of course the ladybug from Ben and Holly's Little Kingdom, who's called Gaston.  Caitlin adores him!

With her Granny and Aunty,

My beautiful daughter, (the dog jumped infront of the camera just as I took this!)

On a side note, I had always set my mind to thinking that Caitlin would be walking independently by her second birthday.  I think this was because her cousin and her friend who both have spina bifida at her level, were both walking independently by the time they were two.  It hasn't happened, Caitlin has a long way to go before she's walking by herself, she still isn't able to stand by herself.  But I am learning to accept that there is no set time for these things to happen and no guarantee that it will ever happen.  But on her second birthday it didn't make me at all sad that she needed her walker to fly about the place.  She was enjoying showing off how fast she can go with it, and I am thankful that she can do that.  It could be worse, alot worse.  As long as she's happy, I'm happy.  Christmas is coming, Caitlin is excited, I'm excited.  Her shunt has just passed the 6month mark and please god may it continue to work.  Life is pretty good right now!  The only niggle is that her syrinx's are causing me more worry than ever, because I'm noticing some changes with Caitlin.  But that is something I don't want to dwell on at the moment, I'm recording video's, taking pictures and comparing them with how she was a few months back but we will need to decide what the next step is soon.  But for now, I'm enjoying my two year old and preparing for a fabulous Christmas.

Merry Christmas to you all!

Reflecting

It's crazy how fast the time goes by.  As my baby girl fast approaches her 2nd birthday I have been thinking a lot about the past two years.
I remember so well the day Caitlin was born.  I remember the first few months of my pregnancy.  I daydreamed about the moment I'd get to cuddle my baby, the look on David's face when he seen his first born, the stream of visitor's we would have with cuddly toys and cuddles for her.  I couldn't wait to smell her baby smell, feel her hand wrap around my finger, watch her wiggle her toes.  I was so excited to bring him or her home with us. That's the way it should have been.

Then spina bifida came into our world.  Suddenly, our baby girl wasn't the baby we thought we would have.  We hadn't imagined her beautiful little body to be broken.  So when the day came to go into hospital, it wasn't because labour had started.  It was because the hospital needed to have a team of specialists waiting for her to arrive, to rush her to Intensive Care, to prepare her for major surgery.  Although I already loved her dearly, I was terrified of her coming into the world.  She was safe were she was.  I was keeping her safe.  I knew that when she was born I couldn't keep her safe and that broke my heart.

I remember like it was yesterday, waiting anxiously in the hospital room - the time was ticking by so slowly.  I remember a cot being beside my bed and it made me feel so sad.  I remember leaving the room and when I returned the cot was gone.  It wasn't needed.  My baby wasn't going to be with me after she was born.  At that time I found it difficult to have hope.
I remember the nurse finally coming to get us to bring me to theatre.  I remember David holding my hand, and squeezing it tight.  I remember the spinal block, the many, many surgical staff in the room.  It reminded how serious this was.  So many medical staff for one little baby.  My little baby.
I remember tugging as the doctor told me she was nearly here.  Then I remember that sound.  The sweetest sound in the whole world, and my worries and fears melted away right in that moment.  It was my daughter crying.  I started crying, and laughing at the same time.  She was here!

The nurses were all commenting on what dark hair she had and I was desperately trying to sit up, which is a bit impossible when you are paralysed from the waist down!  I started shouting, "Would somebody let me see her!!?" My manners went right out the window lol.
They took her to me and let me have a cuddle.

I was elated.  They say you have a love for your child like no other.  Never have I heard a truer word spoken.  The love for your child is unconditional, pure and true.  How much I wished for my daughter to be healthy is indescribable.  But she wasn't  She was taken from us, shortly after that picture was taken, and as I was left on my own in the recovery room I ached to be with her.

I remember visiting her in the Neonatal Unit and I heard her screams.  A nurse ran out and told me not to come in, that they were taking her blood for surgery.  They were also fasting her which meant she was starving.  She was a day old.  I couldn't do anything to help her.  They ended up cancelling that surgery and she was fasted again the next day.  Those first few weeks of her life were a dark time, when they should have been the best of my life. I felt so guilty that I couldn't help her, I couldn't protect her.  I felt I was failing her.

I remember the day of surgery.  Caitlin was 2 days old.  I was in my room when I got a phonecall to say the ambulance had arrived to bring her to the children's hospital.  I hobbled as fast as I could to her to say goodbye and the whole way up I told myself,  Be Strong.  I have to be strong.   It's the least I could do for her.  But as soon as I saw her I burst into tears.  There she was, so beautiful, peacefully sleeping in her incubator which was wrapped up and secured for the ambulance.  She looked so innocent, not a care in the world.  No idea that she was about to be given anathesic and major spinal surgery.  I didn't know how she would react to the anathestic.  Nobody did.  The surgeon only had to make one tiny wrong move, one little jerk of the hand, and she could have ended up paralysed.  I was so scared for her.  Every instinct told me to pick her up and run but I knew she needed this.

So we waited.  And waited.  And waited some more.  It was so unbearable.  They told us 2-3 hours and 4hours later we still had no news.  I was panicking.  What had happened?  And then her neurosurgeon walked in the door and my heart skipped a beat.  We were told he would call so why had he come the whole way over here unless something had gone badly wrong?  He introduced himself and I cut in and asked him "Is she okay?"  He said yes.  I had never been so thankful.  He told me to rest, (as if that was ever going to happen.)  I went straight to the nurse and told her I was going to see my daughter.  Ten minutes later I was walking as fast as I could around the Childrens Hospital in my PJs, getting a few funny looks from passers by and we couldn't find were we were going.  Eventually we got to the ward she would be in and they took us to theatre and there in that massive big room was Caitlin, in her incubator at the back of the room, monitors bleeping all around her.  But she was alive and that was all that mattered.

How I got through those first few weeks, is because of her.  She showed me true strength.  She lifted me up.  It was a horrible time, and I wouldn't wish it on my worst enemy.  After 5 days the nurse said we could bring her home the next morning and I practically hopped and skipped the whole way up the ward to collect her.  Then I heard her sore cry and my heart sunk.  She had caught an infection and needed to stay in.

 Then the fluid on her brain started increasing even more, to the point were the fluid was causing her eyes to look like this,

So, she needed to have a shunt and unfortunately this had to be done on Christmas Eve.
We spent our first Christmas at the hospital, with Caitlin recovering from her shunt surgery.

She looked so adorable in her Santa suit.  The nurses were lovely.  When we woke up on Christmas morning they had left a stocking on the end of Caitlin's bed with a few presents.  That was so thoughtful of them.

We got the best present of all though.  It may have been a bit late, but on Boxing Day we got to go home!!

I would love to be able to say it has been all plain sailing from those first few weeks but it hasn't.  I don't think Caitlin's shunt ever worked when it was first inserted as shortly after she came home from hospital she was irritable, vomiting alot, slept alot.  It took me a month to realise it could be her shunt.  It never occured to me before that it could be blocked because she has just got it.  I didn't think it could block at any moment.  But it can.  And it has with Caitlin.  It's blocked five times.  She's on her 6th shunt now.  It is so scary to know that my daughter, the most important person in the world to me, is kept alive by an artificial device that's attached to her brain.  It can malfunction at any moment and that frightens me.  I wish that she didn't need it but the fact is she does.  I hate her shunt because she needs it yet I am so grateful for it because it gives her the chance to live.

I sometimes can't believe a child so young can go through 7 major surgeries before the age of 2, yet be so happy.  She's shown me that.
Through her own hard work and determination she learnt to sit up,

 crawl,

stand up,

 cruise along furniture

and walk with her walker.

Even after surgery, I'll take a picture of the wound,

And she'll turn around and smile at me.

That's just her nature.  When she's knocked down, she picks herself back up and smiles.  It's pretty admirable.

I've had the privilege of watching her grow, smile, giggle and enjoy life as she does.

It's an honour to be her mummy :)

Ms Peppa Pig, urology and orthopedic updates!

I never seem to have the time to blog anymore!  Time is going in so fast.  With working now, and having appointments every single week over the past few months, we never stop!  I have the week off work and Caitlin is having her nap so thought I would take the opportunity to post some new pics and talk about some of the weird and wonderful things that have been happening with Caitlin and that worrying syrinx.

Be warned, I'm about to talk about poop lol.  Caitlin is 22months old now, (nearly a 2 year old!!) and for the past few weeks she's been announcing that she's done a poo poo.  The weird thing is, most of the time she has or she will over the next few minutes after she says it.  But wait, she's not supposed to have any sensation of when she is going to do a poo, or when she's done one.  She's not meant to have any control over her bowels or bladder.  So how does she know alot of the time that she's about to go, or she's went?  Even for a 22month old with full function of their bowel and bladder, it's a young age to say that they're doing a poo.  I thought she might have been copying other kids in nursery as she sometimes does say it and doesn't do anything.  So I spoke with the girls who look after her in nursery and they say they had noticed that she knows when she goes or is about too because she tells them, and no other child in her room does that!  She also winces when we are blowing up the balloon in her bladder for her indwelling catheter at night.  She's not supposed to feel that either.  I discussed all this with her urologist at our appointment yesterday and she was baffled.  She said were her spina bifida is, she should not have any sensation.  She said it's very interesting and she can't explain it but maybe she does have some sensation.  I know she definitely does have some loss of function in her bowels and bladder as she suffers terribly from constipation and she can't push her poop out herself and she needs catheterised.  But maybe, just maybe she has some sort of sensation there.  The urologist even said we could get a potty and see if she will go for a poop!  What!! I couldn't believe what I was hearing.  I might just get her a potty, not to potty train, but to see if she does feel it coming out, even if she can't push it out herself.  Wouldn't that be amazing!!

Now the possibly not so good news.  Caitlin has always walked with her walker in a normal walking pattern with excellent foot placement.  Over the last few weeks, she's been dragging her feet a lot, bending her knees much more when she is walking, not placing her feet on the ground as well as she was, and turning her feet in much more.  This freaks me out because of her syrinx's on her spine.  Is this what's causing her to regress the way she is?  I hope not.  It could be her Afo's.  She has been cast for new ones, her current ones are too small for her and could be why this is happening.  So we have to see if it improves when she gets her new Afo's and if it doesn't.....well I don't even want to think about that!

We also celebrated Halloween this year.  It was an easy choice to dress her up as Peppa Pig, her all time favourite cartoon character!  I thought she would have loved it, but she didn't want to put it on!  She was not impressed at all lol

 I told her we could go outside (she loves going outside) and she soon cheered up,

She really was the sweetest little piggy I've ever seen :)

Look what I can do!

I've been meaning to take a video of Caitlin's progress with walking and have finally got one!  Naturally my little stinker knew that we were trying to take a video so point blank refused to walk, so I had to tell her she could watch Peppa Pig if she did, which is why she's saying "Watch Peppa" while she's walking :)

Take That Spina Bifida!!"  

Another proud moment for me!  Way to go my little trooper! 

The surprise of spina bifida

When we find out our babies have spina bifida, it's like our world is crumbling around us.  There's nothing positive about your precious child having this disability, well there wasn't for me anyway.  I felt so alone when Caitlin was diagnosed, and yet now it's so different.  I have made some wonderful friends, people I would never have come to know if Caitlin didn't have spina bifida.  There are too many people to mention but I am so grateful to have you all in my life.  One person who I am going to talk about, is one of my friends from Ireland, Rosie.  I met Rosie through Spina Bifida Connection, an online support forum for adults with sb, and parents of children who have sb.  We typed e-mails to each other, swapped stories and soon met up at a parent's night run by ASBAH (Association for Spina Bifida and Hydrocephalus).  When we met there was no awkwardness, conversation came easily, and it was so nice to have somebody who knew how I felt.  Rosie has two children, Katie and Jamie.  Jamie is 2 1/2 years old and has spina bifida and hydrocephalus.  I have him and Caitlin married off already lol.  Over the past year, me and Rosie have kept in contact reguarly, meeting up for playdates and at ASBAH events, and of course, running into each other at appointments at the Royal hospital.  She's been there for me when Caitlin has went through her shunt operations. We talk at length about shunts, walking, Afo's, and we have alot of conversations about peeing and pooping, (you sb mamas will know what I mean lol)  She has come to be a very good friend to me, and I have spina bifida to thank for that.  Without our children having it, we wouldn't have met. 

After our last playdate, I suggested she come to Donegal, were my parent's have their mobile home and last weekend her, her partner Neil, Katie and Jamie did just that.

We had a fantastic time at the farm,

   
Jamie got along brilliantly with Caitlin (I can see the romance already lol)

Katie doted on Caitlin. 

Caitlin loved having her friends to play with,

Us Mummies with our babies,

Chillin out at the carvan,

All too soon, it was time for them to go home, but we all had a fantastic time.  Our two kiddos might have spina bifida and hydrocephalus, but that sure didn't stop all of us having a fun filled weekend. 

New walker!

I'm always saying how when I'm feeling down about Caitlin's progress, she surprises me.  Well, she's only went and done it again!  A few days after I lasted blogged, we went to her physiotherapy appointment and her physio thought that Caitlin was ready for a Kaye Walker!  I was surprised, she hadn't had her front walker for very long, but her physio thought it was limiting her and that a Kaye Walker would benefit her much more.  She wasn't wrong.  I was panicking because a Kaye walker goes behind Caitlin, so she doesn't have it infront of her, like she did her front walker.  So if she lost her balance, she's going to go crashing into the floor headfirst.  But, this walker has swivel wheels, which makes it much easier to turn and get around with.  I held my breath as the physio give it to Caitlin to try out and Caitlin immediately grabbed the handles and off she went.  Since then, she has come on leaps and bounds.  When she leans back on it she can lift both hands off the handles and stand by herself, she can hold on with one hand and do one of her cute little wiggly dances, she's learning to turn it, though she does get a bit too excited and goes flying with it into things!  So far, she is loving it, she isn't afraid at all.  It's helping her confidence.  She loves it that much all she says is "Wee walk?"  I even heard her asking to go for a walk in her sleep lol.  Now that's dedication.

I took a video of her with it while we were on our holidays.  It shows her getting stuck, but that's happening less and less, and everything that she is doing with it. She even shows off a new thing she's learnt, patting her leg while calling the dog Jack, to get him to come to her.  She's a smart cookie.

Enjoy!

I have lots to write about our holidays (we just got back from a couple of hours ago,) but right now I have a tired little girl to put to bed, but there is lots of new pics to come!

Walking and Wheelchairs.

It's only now that I am starting to even allow myself to consider that Caitlin may need a wheelchair when she gets older.  I don't know if I was in denial, but I refused to think about it, convincing myself that she would be strong enough to walk.  More and more, people are asking me, "But she will be able to walk eventually?"  I always answer yes she will, but now I'm starting to think about what that means.  We have been told she will be able to walk for sure.  But that doesn't necessarily mean she's going to walk independently, with only her Afo's for support.  I have kept telling myself her Afo's are all is that she is going to need, maybe it's my way of coping with it all.  But recently, I'm starting to doubt that.  Caitlin is 20months old in a few days and can't stand on her own.  She walks with her walker, but her legs tire easily.  We've had the walker a couple of months now, and she's doing great with it.  She's learnt not to let go when she's finished with it (that resulted in a few nasty falls), she takes steps with it, and can walk with it for about 5- 10 minutes now, and stand holding it for much longer. But I can see how it takes it out of her, it tires her out.  It's not fair that she has to put so much effort into walking - something most of us take for granted.  I am starting to struggle to see how she can go from this to walking independently all the time, without needing crutches or a  wheelchair.  I know those with spina bifida say wheelchairs give them freedom, and independence.  But I struggle with it.  When I imagine Caitlin when she is older, I don't see the wheelchair.  I don't know why, I just imagine her playing with her friends, being able to do all the things they can do.  I just thought it would take more time for her to achieve those things.  But I thought she would be able too eventually.  Maybe I'm being unrealistic.  Maybe it's starting work at the daycare centre thats got me thinking more and more about this.  She'll be moving into the toddler room in four months and I don't know how she's going to cope with it, all the toys are on tables, and I don't know how long Caitlin will be able to stand at them to play.  There's chairs, and Caitlin can sit on them, but the kids tear around from table to table playing, and I worry about how she'll feel if she can't keep up.

I think now, she's going to need to use a wheelchair for long distances at least.  I don't think her legs are strong enough to cope with walking for long periods of time.  It's a hard thought to bear.  I'll probably come round to it as she gets older, but right now, it makes me very sad.

This waiting and seeing can be tough.  I convinced myself that Caitlin would be walking just with her Afo's by the time she is 2, because the two children I know who have spina bifida at her level were walking independently by the age of 2.   I know every child is different, but I had hoped and willed Caitlin to be in the group that wouldn't need crutches, or a wheelchair.

Having said that, Caitlin as always is the happiest and most content little girl.  Our ASBAH ( Assosication for Spina Bifida and Hydrocephalus) advisor was out on Friday and couldn't get over how talkative she was, and said she would very much doubt she would need a special needs teaching assistant when she starts school.  She thinks she will just need a general assistant just to cath her, until she learns to do it herself.  She was also very impressed at Caitlin using her walker at such a young age.  Maybe she will get there....but if she doesn't, as long as she's happy, I can cope with it.

Here are some pics of our trip to Tropical World at Letterkenny yesterday.  We left our camera in the car, so had to use my phone to take pics.  Here's her looking at the birds...

Fasincated by all the butterflies flying around her,

Laughing,

Showing off how good she's getting at standing,

Looking at the rabbits, (I love how she's getting those lovely curls)

Caitlin even loved the tarantula!  I on the other hand, did not.  At all.  I stayed well away while her Daddy showed her it.  She was excited to see what she calls the "spidey".  I think Caitlin's gonna be a vet or do something that involves working with animals when she's older.   She absolutely loves animals and is so good with them.  She even tells people to be gentle when they're petting our dog lol.  She's so much fun and she's my pride and joy.

What a week!

It sure has been an action packed week.  When Caitlin was in hospital in June, I decided that we were going on holiday.  She needed a break and so did I.  We all did.  Something to take our minds off everything that had been going wrong.  So we dipped into our savings and booked a few days away to Salthill in Galway, a sea side resort in Ireland.  We set off last Friday and stopped off in Dublin at Caitlin's godmother's for the night.  Caitlin had a ball, with having three of her big cousins fussing over her, she never got bored!

Saturday morning we set off for Galway.  When we arrived it started raining.  Typical Irish weather!  But thankfully that was the only rain we got during our entire stay.

Our apartment was right along the promenade.  The fun fair was a five minute walk, as was the water world.  The aquarium, park and beach were right outside our front door.   It was fantastic.

Caitlin tried out lots of kids rides,

She particuarly loved the car ride at the amuzements.  All because Peppa Pig and her brother George were in the car with her!  Peppa Pig is one of Caitin's favourite shows, so she was more than happy to get into the car with them.

 She sat like this every time we let her have a go on it.  Just chilling.

The beach, as always, was a hit with Miss Caitlin,

The messier she got, the happier she was...

We decided not to take the pram when we went to the aqaurium.  Instead, we took Caitlin's walker.
She used it for all of about two minutes,

Before deciding it was much better to ditch the walker, and walk around holding Mummy and Daddy's hand.

She loved meeting all the fishies as she calls them,

And even decided she wanted to kiss them,

Even better, after the aquarium, we got to meet a good friend of mine, Dee.  It's weird how you can become friends with people you have never met.  But Dee has always been there for me, asking how Caitlin is when she wasn't well, and we would e-mail regularly.  Her little boy Cian hasn't got spina bifida, but he developed hydrocephalus after birth.  We always wanted to meet up with the kids, and as it happened, Dee was holidaying in Salthill the same week as us.  That's why I booked that week to go!

We met at the beach, but the tide was coming in so we made a quick exit to the park were Cian and Caitlin played together,

Dee, her husband Ger and Cian even popped round for breakfast the next morning before we had to leave.  

As much as Caitlin liked Cian, she wasn't sure about him going so close to her Peppa Pig Tea set.

But it all ended well.  And they said goodbye with a kiss.  

It was a brilliant and much needed holiday.  Roll on the next one!