Thursday, May 28, 2009
I received a call from the Spastic Centre on Friday saying that they're picking up Isla for OT and physiotherapy! YAY!
I love pur physio, but I also want her to have a second opinion, from people who deal with CP daily.
She said they didn't have any appointments until July, yet she sent me an appointment card with a booking for Monday. Seems some wires have been crossed, I must remember to call and confirm exactly what's going on.
Spoke to her physio today, he called to change the time of one of her appointments for serial casting after the botox. We rescheduled a heap of appointments so Dr L can see the effects of the botox before we do casting.
He asked how I was finding her since the Botox, and I can definitely notice a difference in how easy it is to get her AFO's on now. He said that's a very good sign. We went away to the beach these past few days and Isla was making COMPLETE foot prints in the sand, so she's getting heel strikes, which Michael said was very good too.
I spoke to him about the new brace. He is pleased she's getting it. He said she'll wear it at night and during the day if she's going to do loads of walking. He said the aim of the brace is to stop her leg turning in, and he thinks it will be very beneficial for her. Time will tell!
She's booked in for a Multidisc screening that I had difficulties booking (see here!) in 2 weeks time. I have a massive questionnaire to complete in the mean time.
Loads of stuff happening these next few weeks, I hope I can keep on top of it all.
Oh, and I should add, remember my last post I talked about how relieved I was that Isla couldn't recall anything about the Botox process? Well, seems it just took a while to come back to her. Little Isla remembers EVERYTHING, the needle, the sedation drops, the cling wrap, the jelly. EVERYTHING. :(
Friday, May 22, 2009
I was dreading today. Poor little Isla was so out of it yesterday, I just couldn't handle it.
Isla slept without moving until 2am. Once she called out to me, but that's it. Didn't roll over, didn't move her head, just slept. I kept checking on her, gently waking her to ask if she needed anything, but she kept saying no.
I didn't get to sleep until after 11.30 - I just couldn't stop running through the days events over and over again in my mind.
2.30am, Isla woke up and said to Ian, "I don't want to sleep anymore". And with that, she's been up since (it's almost 7pm now) and has shown no signs of being tired. It's like she's caught up on a lifetime of sleep deprivation and is finally AWAKE.
I've never seen her look so bright, never seen her in such a good mood. She's been an angel all day. She's spent hours colouring in, and has made me a card because she loves me.
I asked her what she remembered about being at the hospital yesterday, she said "Umm, I did colouring in and stickers, then I had a little sleep". That's all. My prayers had been answered. She doesn't remember having the sedation medicine, she doesn't remember her bloody nose, she doesn't remember having her x-ray, or the morphine injection. She remembers sleeping. She remembers eating some chips. That's all.
No pain in her legs today, she's walked really well, but has had random falls more so today than in the past. She called my Mum and said, "Nana, I was really brave at the hospital, so can I have a present?".
Mum bought her a Dora Memory game. She's played it about a billion times already.
Thursday, May 21, 2009
We didn't bother setting our alarm this morning, "Don't worry, Harp is my alarm" I say to Ian. She usually wakes at 5am - which is when we wanted to get up to get our butts in gear to get to the Hospital by 8am - but last night she decided to wake at 2am and then went back to sleep until 6.30.
So we manage to get up, get dressed and out the door by 6.45am - with my Mum (and Harp's arch nemesis) arriving to look after Miss Harper-Potamus. Off we go.
Arrived at the hospital on time. All starts well. Dr L comes in with an Orthotist, Physiotherapist and nurses. Room fills up quickly. 2 other children also in the ward getting Botox today. They've both had it before.
Physio & Dr L want to assess how Isla is walking. She refuses. Will only move if she can race the 36wk pregnant physio across the ward. Thankfully, physio agrees.
Dr L asks how the dynamic taping is going, I say it makes a difference on the days I can get her to wear it.
Orthotist has a look at her AFO's, says they're too small (which indeed they are) and agrees to flare them out at the calf to stop the bruising they're causing. Dr L mentions that after the botox, Isla will be casted for new AFO's. BOOYAH.
Dr L and someone, another doctor perhaps, I'm not too sure who she was, but she seemed fairly official, put the elma cream on Isla's calves and hamstrings then wrapped her legs in cling-wrap.
Isla went off to be weighed and measured (14.2kgs and 101.2cms) before returning to her bed to do lots of colouring in and stickers that I'd bought for her, in between watching play school on the tv.
At 9.40am the nurses came with a syringe full of sedative medicine (According to the form they sent home with her it was called Chloral Hydrate). She spat a mouthful out, then had to have 4 people pin her down to get the rest into her mouth. Cue bawling from both Isla and I. Lovely nursing staff were patting me on the back in the midst of Isla's screaming, which caused the medicine to gurgle in her throat, sounding like she was choking. I was a complete mess.
After she'd swallowed as much as they could force her to, a nurse gave me a wet cloth to wipe her tongue with to get rid of the taste. Poor Isla.
10.20am the nurses came back with a needle. One of them told me that I could wait outside if I needed to when they gave it to her. They said that it will hurt her, but there wasn't anything they could do for the pain. So, Isla's thigh was jabbed with Droperidol and Morphine - and she again, screamed the place down. I was laying across her to help hold her still while they injected her, and to also distract her while they were doing it, I failed miserabley on both counts.
The next 20ish minutes were hell. I have never been more upset and terrified in all my life. The medicines were starting to take effect. Isla was becoming disorientated, and the nurse said she was probably starting to feel dizzy as well. She was crawling around the bed, unable to speak properly, couldn't move around properly, her arms and legs seemed to be too heavy for her to move. She cried and screamed, kept saying "I don't want to be here" in a slurred voice. I couldn't stop crying.
I wanted to bundle her up in my arms and run out of the hospital. I tried to cuddle her, she screamed and hit my hands away. I tried stroking her hair, she yelled and moved away, all the time saying, "I don't want to be here".
It took forever for her to get to sleep. She kept saying her nose was running, and was sticking a finger up there. Suddenly, blood started pouring out of her nose, and on to her sheets. I called the nurse, who called the Dr. Ian held her head forward and pinched her nose to stop the bleeding. She was still screaming and crying. I could do nothing but watch on, crying, she didn't want me anywhere near her.
Finally, she started to quiet down. She was almost asleep when a very rude nurse came to put the heart rate/oxygen saturation monitor on her foot and startled her. She started screaming again. Nurse snaps at her "Go to sleep!! Go to sleep!!" - Well lady, she was almost there before you came along.
After another 5 or so minutes she falls asleep. I can finally touch her again, I sit next to her, stroking her beautiful hair and holding her hand. The nurses come in and say she'll go for the procedure in 5 minutes. They're lovely. I am still in tears. They tell me that I can go with her to the procedure room so I know where she'll be, but they don't let parents in, although if she were to wake up, they'd come and get one of us to be with her. I crossed everything and hoped that she'd keep her little eyes shut.
We walked her around to the room. A big room, she looked so little in her bed, sound asleep, completely unaware of what was going to happen to her. I am still crying. Dr L see's me in the hallway and asks what's wrong. I didn't know how to explain it all. I sobbed, "it's not fair". He didn't seem to understand. I told him that I just wanted to make her better forever and it can't be done. He told me he'd look after her, and that we need to do this to give her the best chance. I know he's right.
They say it will take 20 minutes. We decide to go outside to get some fresh air and call Mum to see how Harp is doing. Good news on that end, Harp and Mum have bonded and they're now best friends. She's been asleep for an hour, unwrapped in her bed (opposed to wrapped, in her swing and only lasting 20 minutes for me). Explain to Mum what Isla's been going through. Mum bursts into tears.
We go back inside, I'm waiting outside the bathroom for Ian, the mother of the little boy in the bed next to Isla comes up and tells me that she's back in her room, still asleep. Ian seems to be taking forever. As soon as he emerges, we run up the stairs, back to her side.
She looks so peaceful. Someone had been stroking her head during the procedure, her fringe is sitting funny. She'd be pissed off if she knew. I sit with her again, holding her hand. Nurses come in and say that they're able to rouse her, but she's still very sleepy. She's had Nitrous Oxide while the injections took place.
Dr L comes by to tell us that she did very well. A lady from the pain team tells us that they weren't game to move her during the procedure. She's still in the same position as when she went in.
We book an appointment with Dr L for June 16 while Isla is having her legs casted by two orthotists. I get to pick the design for her new orthotics. I choose mauve butterflies. She has no idea any of this is happening. Orthotist measures her up for a wrap-around brace. I know nothing about it. No-one has mentioned anything to me about her needing another aide. I ask about it, assuming it's a second-skin type thing. He says it'll be made of metal and canvas. I panic. What the hell is this thing. "Is it to be worn at night?" I ask this guy, he says she can wear it at night. It will go up her thigh, it's to keep her knee in place - just like the AFO's are for the ankle and foot, this is for higher. I think it's meant to be worn simultaneously with the AFO's. Great. We pick them up in 4-6 weeks.
She sleeps and sleeps. The 2 other boys come back from their botox, and she's still sleeping. They're up and eating, she's still sleeping. We keep trying to wake her, she keeps groaning at us to go away. The nurses need her to drink something, she refuses. The other boys are getting dressed to go home, she's still sleeping. Nurses try to get her to drink apple juice, she refuses and puts her hand across her mouth to stop us trying to get the straw in there.
She says again, that she doesn't want to be there. We tell her if she has something to eat and drink she can go home. She groggily gets out of bed and sits on Ian's lap and eats half a cup of jelly. Again refuses the apple juice and asks for water. Drinks 1/4 of a cup. Still groggy, she says her tummy hurts and goes back into bed.
Every blink, her eyelids get heavier and heavier. There's no expression on her face. She is so groggy, so sleepy. The other boys go home. Isla drifts between awake and asleep for the next hour and a bit.
Around 2.30pm she manages to eat some chips and with the promise of a trip to the fairy garden, starts to wake, sits up and plays with some stickers. We're all worried she's either going to fall backwards and hit her head on the bedrail, or fall forwards and hit her face on the table. She rocks around woosily the whole time.
She starts to brighten up, we get her out of bed to walk around, we're finally able to leave around 3.15pm, but before we're allowed to go home, we have to go to Radiology in the adult part of the hospital for a hip x-ray, then wait for the films and take them to physiotherapy.
Isla is a trooper. She's so sleepy, her walking is wobbly and unco-ordinated. She's smiling though. We play in the playroom, we pretend to make cakes in the toy oven (an ice-cream cake). She's an angel for the x-ray, is practically asleep on the table. Films are ready within a minute then we're on our way home. Finally.
My head is pounding, Ian is cranky because we're going to be in peak-hour traffic. He wants me to drive because he has to drive in it all day every day at work. I am exhausted. I put Isla in her car seat and tell her it's okay to sleep. She is asleep within 10 seconds. This was around 3.40pm.
She slept all the way home, when we came inside I put her into my bed, so I can be close to her tonight if she needs me. It's 8.40pm now and she's still asleep. I've been waking her every hour or so to ask if she's okay, does she need anything. She says she just wants to sleep - and with all those drugs in her system, is it any wonder.
So I'm still awake. Ian fell asleep as soon as we got home, I had to feed Harper and get her off to bed, then wash up all her bottles, and tidy up. I want Isla to drink something, I'll persist over night. I think I am over-tired now.
We go away on holidays on Sunday. I hope she's back to her beautiful self by then.
Wednesday, May 20, 2009
"Mummy, where are Harper's helpers?". This is what Isla asked me this morning as we were getting her dressed for Kindy. Harp just got her first pair of shoes.
I didn't know what to say. She looked at me and asked why Harp doesn't need them but she does. Broke my heart.
I had to try to explain that Isla is Special and that's why she wears them, but Harper doesn't. She smiled and went on her way, but now I'm thinking, more than ever, that I am really going to have to explain everything to her, sooner, rather than later, as I mentioned in this post.
Botox is tomorrow. I still feel relatively calm at this stage. I imagine I will fall apart tomorrow. I can't quite explain why I feel this way, maybe because part of me always thought Isla was mild enough to get away without any botox, as it's something that's been spoken about for 3 years now, but it's never been a reality, until now.
Ian is coming with us tomorrow, not sure if that's a good thing or a bad thing. Mum is looking after Harper - wish her luck. Harp is oh so naughty for Nana, while it is slightly amusing, we're all going to be stressing off our heads tomorrow, I hope she's a good little lady.
Monday, May 11, 2009
Tuesday, May 5, 2009
After a frustrating time on the phone yesterday with a woman from the Hospital Isla will be going to for Botox, I finally managed to confirm her admission for the 7th.
Then, yeseterday afternoon, I receive a letter from the hospital asking me to confirm Isla's admission for the 21st. Huh? I called them and explained she's booked in for the 7th, it was confirmed earlier in the morning. Lady I'm speaking to on the phone says, "Disregard the letter about the 21st, she is booked in and ready to go for the 7th".
Cue phone call exactly 2 minutes after I hang up from the Hospital, from Dr L's receptionist, "Hi Mrs F, I'm just calling to let you know Isla's Botox has been rescheduled for the 21st of May". Argh!
She went on to explain that there is no anaesthetist there on the 7th, and there are only 3 children being done on that day, so they're postponing it for 2 weeks.
Now I have to call Michael the Physio and re-schedule the months worth of appointments for casting we made for her following the botox, and see if she can get in to see him again before the 21st. Thing is, I think Michael was considering another week of casting before she had botox on the 2nd of June (the original date we were given) - we'll see what he says when I call him today.
Starting to think all these changes are for a reason??????
Sunday, May 3, 2009
And she can conquer the world.
I saw this somewhere a few years back when Isla was first diagnosed with CP and was wearing her Orthotics/Helpers and it really struck a chord with me, so I'm using it as the title of Isla's blog, well, for now at least.
Have been thinking a lot about my little Isla in the lead up to Botox this week, and all the struggles she'll go through in her life. All seems unfair. I just know she's going to be teased when she goes to school, how do I teach her how to deal/cope with it?
Whenever we bump into children at the park or at the shops, as soon as they see Isla's Orthotics, the first thing they ask is, "Why are you wearing those things on your legs?". Isla simply replies with "They're just to help me kick better", and smiles and walks off.
So I'm now wondering, I've explained to her in the past that her orthotics help her walk better, should I be teaching her that she has Cerebral Palsy? Should I be explaining what it all means or is it too much for a 4.5 year old to take in?
I'm torn over it all. I want her to be able to say proudly that she has CP. I want her to know exactly why she is the way she is, I don't want to shield her from anything. I know once she goes to Kindergarten, she'll be pointed at and asked questions by all the kids, not just the kindy kids, she should be able to tell them the right thing, shouldn't she?
All too hard. Will work on it all, bit by bit, day by day.