Caitlin - Botox Baby

Botox Baby

Caitlin!

Botox Baby

Come on baby, let's go get you shot full of botox.
Posted by Pauldos! on 23/02/2007

Come on, baby. Let's go get you shot full of botox.
That's what I say to Caitlin when it's time to make the journey to Royal Brisbane Children's Hospital for her bi-annual botox injections in her legs.
Caitlin has cerebral palsy.
Cerebral palsy is a type of acquired brain damage usually caused by complications during pregnancy and/or birth, but can have many other causes, and the exact cause of any individual case cannot be determined.
The affliction affects the body in different ways in different areas, in different cases. In Caitlin's case, it affects her legs. Her leg muscles are getting false signals from the brain telling the muscles to pull tight constantly, even in her sleep. It is easy to spot a child with this condition, because they are always walking on their toes.
The treatment for this condition is to inject the muscles with the muscle relaxant botox. Without the botox, the constant taut muscles would deform her bones as she grew. She must continue with the botox treatments until she is fully grown, after which time other treatments can be used. In the meantime, she must practice daily exercises to stretch the muscles while they are relaxed, and wear splints that hold her legs and feet in a stretched state. This part is coming along well.
There are a couple of side effects to the botox.
Firstly, growth is stunted. On her growth chart in her bedroom, all the marks for the past two years are in a 10mm band. It looks strange on a child's growth chart. I can't fit all the dates into such a small area, and I've resorted to drawing lines out to a date list down the side.
Secondly, the muscles atrophy. Just as the muscles of a bed-ridden person turn to jelly, so do the muscles that are kept relaxed with botox. Already Caitlin's muscles have weakened to the point where she can barely support her own weight. If we have to travel more than about fifty metres, she needs to use her wheelchair. The wheelchair was paid for by the Cerebral Palsy League of Queensland

. Many thanks.
The problem with the weakening of the muscles from the continuous botox is that it cannot be allowed to continue, or the muscles may never recover. The doctors were hoping that they could keep her on the botox until she is at least eight years old, but it looks like we're not going to last that long. A meeting is scheduled for Kaz, Caitlin and I to meet a team of doctors in early March, where they will tell us that Caitlin has to come of the botox for a couple of years. The problem is, the muscles can't be allowed to return to the taut state, so that means surgery. The typical procedure in this instance is to sever the Achilles tendon, the tendon that attatches the calf muscle to the heel. This means that she will be definitely wheelchair-bound for a couple of years, until the muscles have recovered enough to re-attatch the tendons and resume the botox. The doctors were hoping to not have to do this operation this early. If this procedure is done later in life, then it would only have to be done once more before she was fully grown. If the procedure has to be done this early, then it is more likely that it will have to be done twice more before she is grown.
Of course this is the typical treatment. The doctors have short-listed her for a new procedure called 'dorsal root rhizotomy'. This procedure has only been performed once in Australia, thankfully it was successful. It has been performed about 200 times in America, and is very controversial there. The procedure involves operating on the spinal cord, and cutting the nerves to the leg muscles. It is said that the brain makes new pathways over time, and she will learn to walk again, hopefully free of the spastic diplegia. Of course, as you can imagine, this operation is fraught with danger. If the operation is successful, she will spend three months in hospital, and the next three years in rehab.

Caitlin has always been a happy child, one of the happiest I have ever known. Her affliction doesn't faze her at all. It's just a minor irritation. She loves singing, she is always singing. The upcoming operation, if it's the big one, could change all that.

When the doctors proposed the rhizotomy procedure to Kaz and I, it floored us. This is a dramatic change to what we expected Caitlin's treatment to be. This could be a fantastic opportunity for Caitlin to be closer to normal, or it could be a disaster that makes her life much worse. I have started this journal to chart my own thoughts, not so much for readers of this blog, but more for me, because saying it out loud will help me stay objective about this course of treatment, should it happen.

Caitlin.

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1172278800

The chance of a lifetime.
Posted by Pauldos! on 19/03/2007

We met with the local doctors, and a doctor from America early this month. She flew in just for that meeting. The outlook is a bit more uncertain, now. Previously, we thought that the rhizotomy operation was going to be the big scary one, but it seems that is not so. The rhizotomy is the better of the two possible operations to be performed on her this year.

There will be two rhizotomies performed this year. Caitlin is potentially third on the list. The doctor from America wanted to examine Caitlin and her MRI scans in order to give final approval for her to get on the list. If the operation is successful, she will need no further treatment for the rest of her life. In fact, whatever the outcome of the operation, it will be permanent and will remove the need for any further treatment. We are hoping for a miracle that will see her receive this operation this year, although I wouldn't wish that any of the first two candidates were to drop off the list, because those children obviously need the operation more than Caitlin. I am hoping that they may add a third operation to the list. One of the stumbling blocks to getting an extra operation scheduled for Caitlin is that the hospital lost the MRI's of Caitlin's brain and spinal cord that were taken of Caitlin last year. Disappointing. The doctor from America flew in for only that one day earlier this month. The MRI's were mailed to me the following week on CD. No good to us now. I had a look at the images on the MRI CD the hospital sent to me. Gruesome. Anyway, we are now desperately trying to get a new MRI session scheduled as soon as possible, hopefully before the rhizotomy operations are scheduled, so that she might get approval and get the operation this year. The alternative is the big scary operation. Previously we thought that the rhizotomy would be the operation where she would be months in hospital and years in rehab, but it's not. After the rhizotomy operation, she could be out of hospital within weeks.

The big scary operation is one that will be performed if she does not get approved for the rhizotomy, or if she does get approved but they don't add an extra operation to the schedule, or if number one or number two on the list don't drop. We thought it would only involve cutting the achilles tendon, but it's more than that. If she does not get the rhizotomy this year, what the doctors will have to do is cut not just the achilles tendon, but the hamstring muscles as well, and the muscles on the front of her legs (I can't remember the name of them). Then they cut her leg bones up into sections, re-orientate them correctly, and pin them. That is the operation that will be painful, with months in hospital and years in rehab. It may even make her too frail to get the rhizotomy. And this operation will probably have to be repeated in a few years, and then again a few years after that.

Obviously we are now trying to do everything we can to get that rhizotomy.

Messing around in the spinal column.

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1174352400

Almost there...
Posted by Pauldos! on 19/05/2007

After a complete debacle with the Royal Brisbane Children's Hospital, the MRI has now been done. The doctors examined the scans, and immediately approved Caitlin for the rhizotomy operation in July. This is going to be stressful, mostly for her mother, Kaz. Kaz has given notice at her job, because she will have to go and live in Brisbane in special accommodation so she can be there for Caitlin daily through the rehabilitation process. But the delay over the MRI debacle has meant that Caitlin may have to have the other operation as well, later in the year. This is not going to be a fun year for Caitlin, but she's only seven, she'll bounce back.

Kaz is having serious second-thoughts about this operation. I am trying to stay objective. Caitlin couldn't give two hoots either way. We have all been informed about the remote possibilty of the rhizotomy going horribly wrong. Any operation has it's dangers. It worries me, too, but I have spent a good deal of my younger life in hospitals and nothing ever went wrong, so I believe that we should follow our doctor's advice.
Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1179626400

Operation day.
Posted by Pauldos! on 10/07/2007

The rhizotomy operation was today. Caitlin was in surgery for 10 hours and 50 minutes. What a marathon. Poor Kaz was so distraught. I was content to watch news items repeat ad nauseum on Sky News in the parent's lounge. After the operation, Caitlin was brought to the ward, but we couldn't talk to her because she was dosed up on morphine and ketamine. We sat with her until late into the night, but I had to go to work in the morning, so I returned to the Gold Coast without seeing her awake. The doctors say that the operation went well, but really, we will not know how the operation went for weeks or maybe months. The problem with hacking into the spinal cord and cutting nerves is that there may be unintended loss of functions. Common side effects of a rhizotomy are - loss of bladder or bowel control, loss of sexual function, loss of liver or kidney function, or complete paralysis of the legs. We have to wait for her spine to recover from the surgery before we see the full outcome of the procedure.

The battle scar, four weeks after the operation.

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1184119200

First days of recovery.
Posted by Pauldos! on 12/07/2007

I came to Brisbane after work this afternoon to be with Caitlin. She is still on morphine, but at least she was awake and speaking, albeit groggy. She can wiggle her toes, and she can feel her legs. This a good sign, especially this soon. Caitlin is off the ketamine now but still on the morphine. She has a machine that delivers morphine doses on demand. At the end of a cable is a hand control beside her. The controller has one big button illuminated green. When she is in pain, she presses the green button. The button starts flashing while the morphine is being injected, then goes out. She is not able to receive another dose until the green light comes back on, after a pre-determined period of time I assume. I offered to buy the machine off the nurses. They declined. I was with Caitlin tonight for about an hour and a half before she pressed the green button. I watched her eyes flutter, then she started ranting, but trailed off very quickly. Then she was asleep. I returned to our single-room apartment at Leonard House, the hospital-provided accommodation nearby the Royal Brisbane Children's Hospital, to write this update.

The morphine machine. I want one.

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1184292000

A painful lesson about speaking up
Posted by Pauldos! on 14/07/2007

Well. Drama day today. Caitlin likes being the 'brave little girl', which was her undoing today. She refuses to admit when she's in pain. She was taken off the morphine yesterday because she was not using it. She has been in pain all day today but she wouldn't tell me or the nurses, no matter how hard I pressured her to talk. I know because I can see it in her eyes. The pain became too much this afternoon, and she started crying and screaming. I fetched a nurse, and when the nurse asked her what was wrong, Caitlin went quiet and said that she was 'a little bit uncomfortable', so the nurse did nothing. Minutes later it got worse, with Caitlin screaming the ward down, and finally admitting that her catheter was hurting her. The nurses today have been concerned that there has been too little urine flow from Caitlin's catheter, and she has been asked to drink more water. Being a Sunday, there were no doctors on hand to consult, so the nurses had to ring Caitlin's doctor to find out what to do. So Caitlin remained in pain for a little while. The decision came through to remove the catheter, and when they did, a flood of urine came out. It seems the catheter had been blocked, which accounts for the lack of urine flow, and the extra water had caused a lot of pressure in her bladder. As soon as the pressure was released, the happy, smiling, singing Caitlin came back. She got a stern talking-to from me about speaking up when she's in pain, and her mother will give her more lectures about the same, too.
I wonder what would have happened today if she was still on the morphine, and could not feel the pain of her bladder pressure?

Where's the pee?

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1184464800

Toilet duties, and ward musings.
Posted by Pauldos! on 21/07/2007

Caitlin's recovery is coming along well. She has feeling in her legs but still does not have any feeling in her feet, and very little movement in her legs and feet, but that doesn't bother her in the least. She is all smiles and laughter. After the catheter was removed, the drip was also removed and she was put on solid food. Of course, this meant that she would now have to do her toilet duties in a bedpan. Peeing was OK, but when she did not do a number 2 for a couple of days, the doctor became concerned that she may not have any bowel control, so he ordered an enema. It turns out that using a bedpan didn't fit in with Caitlin's 'princess' image, so she was holding out. She did not like the enema at all, so there will not be any more holding out. Was she thinking that she could hold out until she could walk again? HaHa, children are so funny. At least now we know that her bladder and bowel control is normal. I had no intentions of doing bedpan duties, so I have been carrying her to the toilet to do her business. She likes this arrangement much better. We move her around on a prone-trolley, which is like a horizontal wheelchair. Yesterday I wheeled her around the hospital, and today I wheeled her down the street to the train station and back.

Spending so much time in a shared ward at a public hospital, you see other patients conditions and injuries, and their families. Like the baby in the corner with a condition that looks suspiciously like neglect, and in fact the woman's other child died at home while she was at the hospital with this one. Then there's the little girl of about 4 years old who's family only comes to see her for a couple of hours a day. She looks so lonely, and I really felt for her. I gave her one of Caitlin's toys, but it was really an empty gesture as she already had toys, what she really needed was company. Then there is the little boy of about seven years old in the next bed, who's father decided to buy him a quad bike, but thought that a helmet could wait till tomorrow. He has a nasty head injury. His father stays by his side 24 hours a day. And this morning, a boy of about 12 came in with what looks like a broken leg. Nothing serious, but his parents kept the curtain around his bed closed all day. A mean-looking nurse came in and bellowed "is there any special reason that this curtain is closed?", and she opened the curtain. The mother got up, and without saying a word, closed the curtain again. Some of the other parents were saying out loud, "what's wrong with them?". I, too, got the impression that they thought that they were too good for the rest of us, but I warned myself not to judge other people that I don't know anything about.
Caitlin has plenty of reason to be happy, and I am happy too. Looking around the ward it is easy to see that things could be worse.

On the prone trolley at the hospital school.

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1185069600

The daily schedule for recovery and rehab.
Posted by Pauldos! on 28/07/2007

It all seems like hard work. As Caitlin's recovery progresses, her exercise regime gets more intense. I'll run through what we did on Saturday.
I arrived at the hospital at 7:00 am. Caitlin had just finished her breakfast, so I remove her leg braces, lift her out of bed and into the tilt-chair. It's a wheelchair that is tilted so that there is not too much vertical pressure on her spine. She spends a maximum of 40 minutes in this chair, 3 times a day. I took her to the toilet, lifted her out of the chair and onto the toilet. After she does her business, I wipe her backside, lift her back into the tilt-chair, we wash our hands, and we go to the exercise room. In the exercise room, I lift her out of the chair and place her on the exercise mat. She rolls over to her left, then back to centre, then rolls to her right, then back to centre. We do this for 10 minutes. Then while she's still on her back I raise her knees and hold pressure while she move her knees apart, then back together, 10 times. Next is bum-lifts. With her knees still up, she lifts her bum off the mat, holds, and lowers back to the mat again, 10 times. Next it's over onto the belly, and she raises herself up to hands and knees, and tries to crawl. She doesn't have the power yet to move more than one step before falling over. That's the end of this mornings exercises, so I lift her back into the tilt-chair, and lifting from the floor is really hard, and we go down the lift and outside for some sunlight and fresh air for half an hour. Then we return to the ward and and to the bathroom. The nurse brings a couple of plastic bags and tape to cover her leg plasters, and I lift her up, undress her, and put her in the shower chair. Caitlin can only reach her arms and her front, and I clean the rest. I lift her up over my shoulder and dry her off, then it's back into the tilt-chair and back to the exercise room to get in the standing frame. She has to spend 45 minutes in the standing frame twice a day, so next I call a nurse to help me. I lift Caitlin into the standing frame while the nurse straps her in. This is really hard and awkward, and I nearly dropped her because I forgot to put the standing frame brakes on. I wheeled her back to the ward and she drew and chatted with Tasha, the lonely girl, for 45 minutes. She also has to spend 40 minutes twice a day on her belly, and after the standing frame is a good time to put her on the prone-trolley. I push her around the ward for a bit of a tour. Once belly time is up, it's back into the tilt-chair for 40 minutes before lunch. Just sitting around is pretty boring for a kid, so we decide to go exploring. There is an elevated walkway which joins all the sections of the hospital together, so we head off down that. I was pushing Caitlin for some time before she started to get concerned that we were lost. It is about a kilometre from the children's hospital to the main entrance of the main hospital. After many wrong turns, we finally got there. It was pretty flash, like a modern shopping centre with shops, a food court, an art gallery, and more. Caitlin was awe-struck by how flash it was compared to the children's hospital. I was a bit, too. One thing I noticed immediately was how numerous and attentive the security guards were. None of the above at the children's hospital. We looked in some of the shops, and vowed to come back in the afternoon with money. We headed back and got to the ward just in time for lunch. I lifted Caitlin into bed and re-fitted her leg braces. I left her to her lunch while I walked back to the lodge to have mine.
In the afternoon, first thing was toilet duties, then to the exercise room for a repeat of the morning's exercises. Then I lifted her onto the prone-trolley and we returned to the main hospital. We bought a drink, a bar of chocolate, a Bratz magazine, and returned to the children's hospital. Next was the standing frame for 45 minutes, where we played Quake 2 on my laptop together. Then it was back in bed for an hour. After that it was into the tilt-chair and outside for more sunlight and fresh air. Then back to the ward in time for dinner. I left and went back to the lodge for my dinner.
When I came back from dinner, we watched TV for a little while, then played UNO until 10 minutes to nine. Caitlin won 7 games to 5. The hospital locks up at nine o'clock, so I get out before then. Caitlin wanted me to stay the night on a mattress on the floor like some parents do, but I said 'bugger that!'. Caitlin doesn't need attention through the night so there is no need for me to camp out in the ward. Besides, children smell. And there's a screamer in the corner which, just between you and me, I think is going to be moved to the psych ward. I heard the doctors telling her parents that they have tried everything and her problem is not physical. I have nick-named her 'super-emo'.
I walked back to the lodge and collapsed on the bed and passed out. Then I did it all again today. It's a lot of hard work, but it's not like I couldn't do with the exercise myself, and it is all worth it 100% for Caitlin. She is a great kid. I love her so much.

The tilted wheelchair.

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1185674400

Am I a doctor now? and more ward musings.
Posted by Pauldos! on 04/08/2007

Every week I go to Brisbane to spend the weekend with Caitlin, and every week Kaz updates me on what to do and what not to do with Caitlin. And, of course, it just goes in one ear and out the other and I do it my own way. The program dictates what exercises she must do and when, how long she must spend sitting, on her back and on her belly, in the standing frame, and when the foot splints and leg braces are to come off and go on. I usually follow the program closely because it is important to Caitlin's recovery, but this weekend I re-wrote the program, and got it endorsed from the top!
When I got there on Friday night, Kaz told me that Caitlin had blisters on the back of her heels, and I was to change the pads on the blisters whenever I took her foot splints on and off. Well, when I went to change the pads on Saturday morning, the blisters were bordering on festering. Caitlin burst into tears, saying "the skin's coming off!". I decided right then that the wounds had to have air to dry and heal, so that meant no new pads, and that would mean no splints, and that would mean that some exercises couldn't be done, and others limited. As I was thinking about it, the doctor approached and asked what I was doing. I showed the doctor Caitlin's heels, and explained that I thought the blisters needed to heal, so I wanted to leave the splints off for whole weekend, limit her exercises, cut out the standing frame, and furthermore I would require alcohol swabs to keep the blisters clean and dry in the meantime. The doctor said, and I quote, 'I agree with everything you have said, I'll get you the swabs in a few minutes'. How is that? Call me doctor Pauldos! So we did what exercises we could, and Caitlin crawled five steps. Progress is getting slower, and I think that it will be quite some time before she can walk again. She had heightened sensations in her lower legs last week, and just touching her legs caused pain. That has subsided, and now her feet have heightened sensations. I discovered that flicking her toes feels to Caitlin like they have been hit with a hammer. So I used this feature to keep her in line. hehehe.

Caitlin has made a new friend in the ward this week. Her name is Brooke. She is lined up for a lung transplant, and later in the year a hip operation. I gave her the nick-name 'Broke' (as in 'Broken'). As the girls were styling their hair, Broke said "I do it like this because my boyfriend likes it...". "Boyfriend?!" I said. "Just how old are you?". "Ten." she said. Oh well, I said to myself, there's nothing like a life-threatening medical condition to speed up the life experience timetable. Good on her. She did seem very mature. I listened to her negotiate changing her medications with her doctor, and then she negotiated her discharge. The doctor brought her an air flow meter, and said that if she could blow 500 something-or-others three times, she could go home. She did. I started to wonder if Caitlin could be maturing early because of all this trauma, but after watching her play Barbie dolls for a while, I decided that she has not. Caitlin's condition is not life-threatening, so she doesn't really have to sacrifice the the present for the future. That's good. Kids should be kids as long as they can.

Broke

One last note, I was wrong about 'super-emo'. She is not a mental-case. She took a head-knock in a car accident, and what the doctors were saying was that they had done everything they could, and now they would just have to wait for the swelling of her brain to go down.

Back to the start. Learning to crawl.

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1186279200

No escaping the hospital.
Posted by Pauldos! on 11/08/2007

Caitlin's recovery is coming along well, and she is starting to get itchy to get out of the hospital. She can now spend as much time as she likes sitting up, and her tilt-chair has been progressively brought to the upright position over the past couple of weeks. There is no more pain, and no need for any medications anymore. Kaz asked Meredith, the physiotherapist, if Caitlin could stay at the lodge for just one night, but Meredith wasn't sure that she wouldn't lose her hospital bed if she did. I, too, would like to have Caitlin stay at the lodge with me, rather than having to leave her every night before the hospital closes. So on Saturday I asked Caitlin if she would like me to kidnap her for the night. She wanted to, but the physiotherapist had her afraid of losing her bed. I told her that the nurses didn't have the authority to kick her out, and there were no doctors on duty on a Saturday night or Sunday morning, so we would be able to escape for the night with no trouble. She wasn't convinced, so I guess I don't outrank Meredith. So instead we settled for a day out of the hospital. After her morning exercises, we told the nurses that we would be back in an hour. We headed to the lodge, where Caitlin transferred to her own wheelchair, which is lighter and more manoeuvrable and collapses to fit in the boot of the car, and we went to the Newmarket Shopping Centre, then to McDonalds for lunch. I observed another 'big-city' oddity. On the Gold Coast, a kid in a wheelchair attracts attention, and children stare. But on Saturday in Brisbane, no-one paid attention, not even children. Curious.
It was a great day out for Caitlin, she was happy to get out of the hospital.

Relaxing.

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1186884000

No longer an inpatient.
Posted by Pauldos! on 15/08/2007

I got a phone call from Kaz today. Caitlin no longer has to stay at the hospital as an inpatient. She still has to go to hospital for physiotherapy every day for at least two more months, but now as an outpatient. This means she will be staying at the lodge with us. HOORAY! No more bailing out of the hospital before nine o'clock at night, and no more getting up at six o'clock in the morning to go to the hospital for Caitlin's toilet duties. And even better, there will not be any physiotherapy on the weekends, so when I am at the lodge, I will not have to go to the hospital AT ALL. It's not that I don't like the hospital, it's just that I don't like all the backwards and forwards to and from the hospital. She will still have to do her exercises on the weekend, but we will now do that at the lodge.

In the standing frame.

On 10/01/2012, Anjii had this to add -To think, I was cofnuesd a minute ago.

On 11/01/2012, npmufxwrxn had this to add -FxCMMI , [url=http://udlhlejwzxgd.com/]udlhlejwzxgd[/url], [link=http://icqlmpabwgbv.com/]icqlmpabwgbv[/link], http://vvyczmavllpf.com/

On 11/01/2012, rssngxxb had this to add -RUG3T6 , [url=http://krtxnvbhtnwm.com/]krtxnvbhtnwm[/url], [link=http://urqibkzvjmau.com/]urqibkzvjmau[/link], http://tljvycrvwxpw.com/

On 11/01/2012, bpjqyq had this to add -kV6oWC , [url=http://twdtkoygzprg.com/]twdtkoygzprg[/url], [link=http://zevdldsemidk.com/]zevdldsemidk[/link], http://mxgrzrttstxb.com/

On 11/01/2012, nhnfqmhn had this to add -GLsEaw , [url=http://plqbpwppjvov.com/]plqbpwppjvov[/url], [link=http://lxdyauixjtpu.com/]lxdyauixjtpu[/link], http://axqjfbghhysl.com/

On 11/01/2012, wlvtnder had this to add -78HymD , [url=http://gpugwwgcubim.com/]gpugwwgcubim[/url], [link=http://dtdybigkuxow.com/]dtdybigkuxow[/link], http://pchkveolexid.com/

On 11/01/2012, jszckzs had this to add -vkQFtj , [url=http://piqagnnobjvq.com/]piqagnnobjvq[/url], [link=http://gvvgwnzoajgc.com/]gvvgwnzoajgc[/link], http://fzexwctsrmlr.com/

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1187229600

The unstoppable kid.
Posted by Pauldos! on 18/08/2007

It was great to spend the whole weekend with Caitlin, and no running backwards and forwards to the hospital. The hospital took Caitlin's wheelchair to do modifications to it, and have loaned her a piece of crap that looks like it saw it's best days in World War 2. That's just a description of it's appearance, by the way. The wheelchair actually worked very well. Old stuff is usually built better than new stuff. We went the Newmarket shopping centre for lunch and grocery shopping on Saturday.
My sister gave Caitlin a mobile phone last week. I'm not sure I approve of children so young having a mobile phone. Especially when it's better than mine. She asked me to show her how to set the alarm on it, but I said that I didn't want to get up early on a Sunday to turn it off. She said that she would turn it off, and I asked "how are you going to do that when you can't walk?". She didn't answer but I let her set it for nine AM anyway. I figured I would have to get up to take her to the toilet before then anyway. When it went off on Sunday morning, I pretended to be asleep while I listened to her drag herself out of bed and crawl to the lounge room, cancel the alarm, and crawl back to the bedroom. She woke me up and said "see, I told you I would turn it off.". She is a little champion. Nothing stops her. I am impressed with how well she is progressing.
Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1187488800

Keep dreaming, little girl, but no more nightmares please.
Posted by Pauldos! on 20/08/2007

I was planning on bringing Caitlin home to the Gold Coast this coming weekend, just for the weekend, but it seems she couldn't wait. I got a phone call from Kaz today, saying that Caitlin wanted to come home for the night. I raced up to Brisbane straight after work, in a cyclone, to pick them up and bring them back. On the way back Caitlin fell asleep in the back seat. When we were nearly home, Caitlin woke up and started to cry. She used to wake up crying when she was little, as most little children do, but she hasn't done so for years now. The crying quickly turned to screaming, and she was yelling "IT HURTS!". Kaz was trying to calm her down, and asking her where it hurt. "MY FEET, IT HURTS". I was filled with dread. Had we taken her on a long car trip too soon?, and damaged her spine?
"PLEASE DON'T!" she screamed. "Don't what?" Kaz asked.
"DON'T CUT MY FEET OFF!!, IT HURTS" she screamed. "What? Nobody's cutting your feet off" Kaz answered.
The screaming became blood-curdling and I started to panic. Kaz leaned into the back seat and tried to calm her, and asked again, "what's wrong?"
Caitlin pointed to the windscreen and said "IT'S GOING TOO FAST!!". I was just coming into Southport and had slowed to 70 Kph.
"What's going too fast?" Kaz asked. "THE MUSIC!! THE MUSIC'S GOING TOO FAST" Caitlin screamed. I turned the radio off.
Kaz leaned further into the back seat and shook Caitlin. The screaming stopped instantly and Caitlin said "Huh? What mum?".
It seems she was asleep and having some sort of a nightmare. What a relief. Thanks for the heart-attack, girl.
Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1187661600

Preparing for the long journey
Posted by Pauldos! on 30/08/2007

The operation, and the post-operation, periods are over. Caitlin has now begun the slow process of recovery. She has not needed any medication since leaving the hospital, but she still goes to the hospital every weekday for physiotherapy and hydrotherapy. Hydrotherapy is the technical term for 'swimming'. They have had her in a walking frame a couple of times, but she still is not able to stand on her own. I have checked out her leg muscles and it seems to me that she has the strength in the muscles to stand up, so it must be a nerve thing. Before the operation, her calf muscles were very thin and weak, but still she could stand and walk, albeit awkwardly. The hamstring muscles had only been receiving botox for the last year, while the calf muscles have been receiving botox for the past three years, up until the start of this year. I have been concerned about how much her calf muscles had deteriorated towards the end of the botox sessions, so I have been watching them. They seem to be getting better, but not by much yet.
I have just put Caitlin to bed, and I put her leg splints on her as Kaz instructed me to. Kaz says she has been getting leg spasms during the night, so she must wear the splints. I have not noticed any spasms myself on the nights that I stay with Caitlin, and she slept in my bed last week, and I don't remember getting kicked. But I have seen her have some small spasms in the daytime. Her leg will just suddenly tremble, or she will flick a foot out, then look up at me and say "did you see that, dad?".
Her physiotherapy will only need to be intensive for a few more weeks. After that it can be done locally at the Gold Coast Hospital. Caitlin will be fully released to come home on the 26th of September, eight days after her seventh birthday. Unless there are any new developments to report, I will probably not have another update until then. From here on in it's just a slow process of learning to walk all over again.
On 11/09/2007, michelle and dominic had this to add -Hello Caitlin.Best wishes for a quick recovery.Looks like there might have to be an other little person added to this barbeque.Good luck Caitlin.

On 13/09/2007, Alyson Gundry had this to add -I'm impressed with all your work. Great personal account of your journey with Caitlin. Alyson

On 16/09/2007, Donna Hipgrave had this to add -Happy 7th Birthday for tomorrow -I hope you have a great day and get lots of lovely presents!!.I loved reading your blog

On 17/09/2007, cOOter had this to add -Happy Birthday Caitlin ;) xoxo

On 19/09/2007, Martyg had this to add -Hope you luved your B'day Miss, Paul best reading I've had for a while good on You for your Effort, but someone dose make it worth it. Martygee

On 10/01/2012, Marty had this to add -Haha, shouldn't you be cahgring for that kind of knowledge?!

On 11/01/2012, yjtbzqpxyw had this to add -c0LITS , [url=http://zqlolxvkicrq.com/]zqlolxvkicrq[/url], [link=http://sebsfvukxhup.com/]sebsfvukxhup[/link], http://dcezqjgawoit.com/

On 11/01/2012, wmjkbxg had this to add -a4E9Ef , [url=http://qwqhkcxsewdi.com/]qwqhkcxsewdi[/url], [link=http://vcdiisvawozd.com/]vcdiisvawozd[/link], http://whwylqkmjhoo.com/

On 11/01/2012, fodbdpnodm had this to add -Uz9TVg , [url=http://cdgnavildmeg.com/]cdgnavildmeg[/url], [link=http://jeodngpxgrxd.com/]jeodngpxgrxd[/link], http://pfoqlwtipunv.com/

On 11/01/2012, xesjugj had this to add -u7Clh6 , [url=http://kiyxvbddcgme.com/]kiyxvbddcgme[/url], [link=http://ecioogbyppws.com/]ecioogbyppws[/link], http://hrajcozkymvv.com/

On 11/01/2012, luromd had this to add -PJ1ijZ , [url=http://ssnjgkmlnwlw.com/]ssnjgkmlnwlw[/url], [link=http://kayakvoxzgcv.com/]kayakvoxzgcv[/link], http://gppurwpekyrl.com/

On 11/01/2012, coolseglnb had this to add -kUZTQC , [url=http://ugkztnrtksyh.com/]ugkztnrtksyh[/url], [link=http://tjdzfaroloit.com/]tjdzfaroloit[/link], http://mcdxyzxlvqjp.com/

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1188525660

Birthday girl
Posted by Pauldos! on 21/09/2007

Caitlin's birthday was the other day. We brought her home for the day to celebrate. She had a small party for family and a few friends from school who are sympathetic to her condition. She insisted on playing 'tag' in the backyard, so I had to push her in the wheelchair around the yard at breakneck speeds, and making manoeuvres that should not be made in a wheelchair. I nearly rolled the wheelchair when I hit a dog-hole in the yard. She screamed. It was far too much exercise for me. Caitlin made a lot of use of her walking frame at the party, and I am surprised at how well she can walk with it. Kaz has remarked to me a few times on how impressed she is with Caitlin's walking, especially how she walks with her feet flat on the ground, something she has not done ever.
When I picked Kaz and Caitlin up from the hospital on Friday, the modifications to her wheelchair had been made since her birthday. I have been apprehensive about letting them alter the wheelchair in any way, and I asked Kaz on numerous occasions to find out exactly what they wanted to change and why. I did not want them to turn our nice new wheelchair into a piece of crap. When I arrived on Friday, the wheelchair had a cloth-covered hard back and a cloth-covered hard seat, where the fabric back and seat used to be. When we went to load all the gear into the car, I discovered that modifications meant that the wheelchair no longer folds up, so it would not fit in the car. It was not too big a deal anyway, because after seeing Caitlin in the walking frame on her birthday, and Kaz telling me about her flat-footed walking, I planned on making her use the walking frame barefoot all weekend. So today, I did not put her foot braces on, and let her use the walking frame for all her moving around. I am impressed with her walking. I don't see any spasticity in her movements, and she walks with her feet flat. This is still not as good as a normal person, who would put their heel down first as they walked, but it is a drastic improvement. Her walking style still needs a lot of work, but as she has never been able to walk properly, this is something that will have to be learned from scratch. Caitlin still cannot stand up without the walker, and it will probably be several months before she can do that. I have added a picture of her standing flat-footed, something Kaz and I have never seen her do before the rhizotomy operation.
Caitlin's release date from Royal Brisbane Children's Hospital has been moved back to 28/09/2007.

Standing with feet flat! Unbelievable.

On 21/09/2007, Terry had this to add -Happy Belated Birthday Caitlin... You're making us all proud.. Keep up the good work kiddo, Show us what a fighter is all about :)

On 21/09/2007, that silly cb guy had this to add -"It was far too much exercise for me" Sweetie, get dad to change brands of beer - That xxxx he drinks doesn't seem the right ale for his old, but well meaning heart. (we love you as well Dad, xoxo) Dad, you have one of our special Angels in your care. The world needs more Angels like Caitlin ;) God bless.

On 11/08/2011, Gytha had this to add -This forum ndeeed shaking up and you've just done that. Great post!

On 13/08/2011, uicjpyhtm had this to add -1cpigc , [url=http://naixanynixfw.com/]naixanynixfw[/url], [link=http://bntocvvcffaf.com/]bntocvvcffaf[/link], http://hkrrgypepsjp.com/

On 19/08/2011, vpfzylwgv had this to add -Lcdp2W , [url=http://fodfrqrkfckj.com/]fodfrqrkfckj[/url], [link=http://bbwasaamnswn.com/]bbwasaamnswn[/link], http://ucezdxsshpun.com/

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1190426460

Discharged from hospital
Posted by Pauldos! on 27/09/2007

Caitlin was released from hospital today. It has been two and a half months since she went in for the rhizotomy operation. She is so happy to be home. She has been bubbly and smiling all day. Of course there will still be frequent trips to Brisbane for intensive therapy sessions, and assessment of her progress, but most of the rehabilitation will now be done down here on the Gold Coast. Kaz gave me a copy of the intensive daily exercise routine, but when she's with me there'll be none of that. One day a week off the routine can't hurt, and I like to exercise her in my own way, on the areas that I feel need work. So this weekend it will be more of the walker in bare feet. I think she needs to work her foot muscles more, and the foot braces prevent that. I left her wheelchair at Kaz's place, I want her to work them feet as much as possible. We can always go get the wheelchair if we need it.
Ever since she was diagnosed with cerebral palsy at the age of three, Caitlin has had to wear oversized, clumsy shoes, to accommodate her foot braces. Tomorrow, I'm going to take her shopping for shoes. Normal sized shoes. Pretty shoes, that she can wear like a normal kid. I can't wait, I'm so excited. I know she's going to love it. We have a friend's bar-b-cue to attend tomorrow afternoon, so it will be bare feet in the morning, and bare shoes in the afternoon.

Like Peter Beattie, Caitlin has become a bit of a media-tart. She appeared on television last month in a channel nine news story on sick children's day at the Brisbane ekka. She also featured in a newspaper article in a similar story. She has featured in a pamphlet for the children's hospital. And today, Caitlin accepted a cheque for $539,000 for the Royal Brisbane Children's Hospital from Coles-Myer Pty Ltd. It was Coles-Myer who paid for her rhizotomy operation (we dare not ask how much it cost). The presentation of the cheque was filmed and will be used in a television commercial for the hospital which will run for a month on channel ten starting October 1st.

On 27/09/2007, DD had this to add -wow after practically growing up with you paul i always thought i have now seen a completly different side to you. Caitlin beautiful *and best cuddler around 2nd only to my own daughter kitana* nice to see that you cant keep the best of them down no matter wot you throw at them in life and sweetie ur one of the best in a lot of peoples eyes *mum and dads mostly* and by golly gosh am i in need of the BIGGEST CUDDLE you can muster up cause its been tooooooo long love you both. SCULLY, kitana and a

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1190944860

An interview with Caitlin
Posted by Pauldos! on 28/09/2007

Most of this page has been not about Caitlin's experience, but of my experience as Caitlin's father. So, today, I decided to ask her some questions. Most of these questions I already know the answer to, but I wanted to get the answers from Caitlin for this page. I interviewed her, and here are the answers in her own words. Most of her answers are short, and lack detail, but it's not unusual for kids to be short on details.

Were you scared before the operation?
No.
Why not?
I just wasn't.

Were you scared after the operation?
Scared about what?
Scared that you might not walk again, or that other things might not work?
No. If I ended up in a wheelchair, I'd just have to learn how to get up escalators.

Does your back hurt?
No. Not even after the operation.
Really? Then what was the morphine for?
Because of all my spasms at night.

Does your back hurt when you bend over or stretch?
No.

Do you remember that after the operation, I flicked your toes and feet and legs, and it felt like it hurt a lot because your nerves were really sensitive?
Yeah.
Has that gone away?
Yeah, but I can feel deep pressure (pokes herself in the leg), but I can't really feel it when it's light, like this (brushes her leg lightly with her fingers)

Could you feel the spasticity, the tightness, in your legs before the operation?
They didn't feel tight, but they probably were.

Do your legs feel any different now after the operation?
No not really, except when they spasm ha ha ha !

After the operation, your legs would get hot and cold sensations. Do you still get that?
Well, on hot days they feel hot, on cold days they feel cold.

Do your legs feel like they are getting stronger?
Not really, but I can feel the difference in my exercises. (pushes my chair away with her legs to demonstrate)

Yesterday, you told me about how you walked on the treadmill without holding on.
Well, I holded on to the handles, but it was without the harness.
That's great.

Can you walk yet?
I can walk in the walker, but not without it.

When you walk, does it feel like you're getting better?
Not really, well, a little bit, because my toes don't hurt.

Do your exercises hurt?
Well, they only hurt when I do my stretches, but that's what the stretches are supposed to do!

Are you glad to be out of the hospital?
I'm not glad-glad, but, I guess... I'm happy !!

Do you have a question for Caitlin?
On 07/10/2007, Stooge had this to add -I saw Caitlin on TV - she's a super star!

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1191031260

Walking, not walking, and disabled parking spaces
Posted by Pauldos! on 28/10/2007

I was hoping to publish a picture of Caitlin taking her first steps un-aided, because last week she took one step without her walker, but there has not been any progress since then. Maybe she will be walking by Christmas. I work Caitlin very hard on the weekends, I make her walk everywhere we have to go. She doesn't complain, but she does ask if she can use the wheelchair instead. On Saturday, I forgot to put the walker in the car when we went to Bunnings, and when I realised it, and told her that we would have to use the wheelchair, she let out a big YAY!!
At least at Bunnings there were plenty of disabled parking spaces to use. I find myself starting to become a bit of disabled-parking-space nazi. It seems to me that you can get a disabled parking permit just for being over the age of fifty. Last week, a lady cut in front of us to obtain the disabled parking space, and then got out of her car and walked briskly toward the shops. She didn't look to be more than fifty or fifty-five years old, and in good health. Yes, I did check, and her car was bearing a permit. I don't begrudge the elderly their fair use of disabled parking spaces, but it would be nice if those that have fairly good mobility could leave the closer spaces for those that have less mobility. Caitlin and I don't use the closest space unless it is the only one remaining, because there is always someone that will have less mobility than Caitlin. And Caitlin has me or her mother to help her out of the car and push her, so she is technically more mobile than adults who have to do it all for themselves. There, that's my bitch session done for this week.
On 22/11/2007, Fiona had this to add -Keep up the great work. I have a son that is 7 who has CP. All CP kids seem to have such strength and personality. My Lochlan has opend my mind to how much we can learn from our children. I understand how much commitment it takes to give our children every chance to be the best that they can be. You should be proud of yourselves. Good Luck with it all !!

On 17/05/2011, Niamh had this to add -Sorry but that's really unfair of you to assume that the woman had no disability. Some people's disabilities cause them pain/exhaustion when they walk too much, but they can manage fine when given the chance to minimize their walking. I'm ashamed that a parent of a disabled child would have the nerve to criticise someone else who is disabled. She as a permit and that's plenty evidence for you. She has a condition that fulfills the requirements to get the permit, so she does have a disability whether you like it or not. I am very sensitive to this subject because I have an invisible disability myself. I'm autistic and I hope to get a disabled parking permit when I drive. Just because I'm able to walk doesn't mean I can cope with being in a car park for very long. Leave people alone and mind your own business.

On 09/07/2011, Pauldos had this to add -That's fair commentary. I do not know what disability the lady had. I did not criticise the lady directly, nor would I. But disabled parking spaces are intended for those with mobility problems. I won't apologise for feeling annoyed with those who do not seem to be mobility impaired.

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1193619660

Singing girls, and the problem of the feet
Posted by Pauldos! on 07/12/2007

I have talked about children with other parents over the years, and I have found that it's almost unanimous that boys are easier to raise than girls. I don't think that girls are difficult, they just require more input, and you have to deal with them on an emotional level more than you do with boys. But there are many things that make it well worth the extra effort. Like when they sing. I love listening to Caitlin sing. She has a great voice and she makes up her own songs. I try to encourage her, but she gets all shy and stops singing, so I have to content myself with listening to her from the next room. She is in her room singing as I write this. Last week, I got a special treat. Caitlin and her sister, Stevie, were singing together. I have never heard the girls sing together before and it was magic. I did not disturb them, I did not even move in case I made a noise and they sensed I was listening and stopped.

Caitlin has been regaining strength in her legs, and it won't be long before she will be able to walk without the walker. I think that the majority of her problem now is in her feet, and her foot control. She walks with Kaz and I on either side of her holding her arms to help support her, but her walking is very 'clunky'. She picks her feet up plonks them down flat, whereas a normal person would push off with their toes and plant their foot down heel first. I have been trying to address this by leaving her foot splints off on the weekends, and having her walk around in bare shoes. I also have her do new exercises where she stands with her feet flat and raises herself up onto her toes, and then back down repeatedly. On Wednesday, Caitlin attended a day out for disabled children at White Water World, where she met members of the Brisbane Broncos and Gold Coast Titans football teams. She had a great time in the wave pool and the little kid's water slides. But of course, all without any foot splints, so when she got home, her feet were swollen and badly bruised all over. Her weak ankles were allowing her feet to roll, fold, and twist. They are still bruised this weekend, so she is wearing her foot splints to stop it getting worse, and no foot exercises today. I don't know if her ankles are weak from years of wearing splints and plasters, or whether it is just poor muscle control, but I'm sure that this will have to be addressed before she can ever walk satisfactorily.
On 10/01/2012, Krystallynn had this to add -What a great rseoruce this text is.

On 11/01/2012, hujxkqjhe had this to add -anIxgz , [url=http://snzzhdatjbqz.com/]snzzhdatjbqz[/url], [link=http://njkdyigdvuvp.com/]njkdyigdvuvp[/link], http://kbzqsyavkmda.com/

On 11/01/2012, xbccjqjbt had this to add -RIABpQ , [url=http://exvnkycdvdnz.com/]exvnkycdvdnz[/url], [link=http://ooquluiakaxm.com/]ooquluiakaxm[/link], http://futixflyohsk.com/

On 11/01/2012, qwhfojruzcw had this to add -rFl8Ac , [url=http://cvtjhamidqgh.com/]cvtjhamidqgh[/url], [link=http://kihupozflgli.com/]kihupozflgli[/link], http://tvdnfkevrrfg.com/

On 11/01/2012, dfvamoqlzqx had this to add -buYmmI , [url=http://rwrrgbpfmenb.com/]rwrrgbpfmenb[/url], [link=http://murjdhjwotxc.com/]murjdhjwotxc[/link], http://bxvfgpgkkobd.com/

On 11/01/2012, yjqjljz had this to add -VFP6Qo , [url=http://qvilkntvcrgk.com/]qvilkntvcrgk[/url], [link=http://ktuvopsiputc.com/]ktuvopsiputc[/link], http://piuteqdvvmuy.com/

On 11/01/2012, bzdcbv had this to add -MhpIeD , [url=http://hpcnydivqyoz.com/]hpcnydivqyoz[/url], [link=http://sxpvscwftjpy.com/]sxpvscwftjpy[/link], http://wzpraxcumafg.com/

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1197075660

Strogg Medical Facilities
Posted by Pauldos! on 11/12/2007

Caitlin is back at Royal Brisbane Children's Hospital for the week this week, for more intensive therapy and another assessment of her progress. Kaz and her are staying at Leonard Lodge again. Caitlin and I refer to the hospital as the 'Strogg Medical Facilities', which is something I have been joking with her since before the operation. Allow me to explain.
I have a game on my computer called 'Quake 4', which I play frequently. Caitlin likes to play it with me, especially late on a Saturday afternoon when she is winding down for the day. I even loaded it onto my laptop so she could play it in hospital. Quake is a shoot-em-up game. The premise is that you, the player, has to fight off an alien race of cyborgs, called the Strogg, from the planet Stroggos. The Strogg are part creature, part machine, hybrids that have come to earth to harvest humans to make more of their... 'people'. In one particularly gruesome part of the game, your character is captured by the Strogg, and is sent to be processed. This part of the game is titled 'Strogg Medical Facilities'. In this section of the game, you are a spectator while you watch your character undergo transformation into a Strogg, where the character's abdomen is cut open and organs replaced with machine parts, and the character's legs are graphically hacked off and replaced with mechanical legs. In the lead-up to the rhizotomy operation, I taunted Caitlin that the hospital is really the 'Strogg Medical Facilities', and they were going to turn her into a Strogg. She knows that Quake is just a game, of course, and that they were not really going to turn her into a Strogg, but it's still our little running joke. One of my pet names for Caitlin is 'My little baby Strogg'. Other pet names I have for Caitlin are - 'Baby', 'Baby Caitlin', 'Chicken Twisties', and 'Sugar Rush'.

But seriously though, when I refer to the hospital as the 'Strogg Medical Facilities', that's just a joke between me and Caitlin, I'm not disparaging the hospital. In fact, let me take this opportunity to say that the care that Caitlin has received from the Royal Brisbane Children's Hospital has been top quality and professional and friendly. The doctors, nurses, therapists, warders, assistants, and even the big guy that brings around the food, have all been first-rate. You couldn't get better care, with better people, anywhere. I'm sure that's been said many times about many hospitals, but saying anything less really wouldn't give enough credit to all the staff of RBCH and, of course, the volunteers and support organisations like Working Wonders. We love you all, and we thank you all. Caitlin has a bright future thanks to all of you.

Strogg Medical Facilities.

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1197421260

Merry Christmas
Posted by Pauldos! on 24/12/2007

Caitlin came back from the Hospital a week ago with new tools - quadsticks. These are the next stage of learning to walk. The quadsticks are walking sticks with four feet on the end. At the moment, Caitlin is limited to using the quadsticks only around the house. As she gets used to the quadsticks, she will use them more, and use the walker less. She still wears the foot splints, and probably will for months or years to come. The good news, Kaz tells me, is that Caitlin will not have to have her tendons cut, or her leg bones chopped up and re-oriented, or have botox injections ever again.

Today, Christmas day, as I write this, she is practicing walking un-aided up and down the hallway. She practices in the hallway because there are walls on both sides of her to steady herself on if she wobbles. She won't try walking un-aided out in the open because it hurts when she falls. When she gets better at walking, I will get a picture.

Merry Christmas everyone, from Caitlin and all her family. I hope you all have a good day.

Christmas girl.

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1198544460

Work, work, work... and escalators.
Posted by Pauldos! on 15/03/2008

Well, happy new year. Sorry about the lateness of this update, but work has been unbelievably heavy since the start of the year. I have been bringing work home with me to cope with load. The best word I can find to describe it is 'relentless'.

Caitlin's is progressing more slowly now, but still getting stronger every week. She can walk short distances, but her muscles are still too weak to hold her up if she wobbles or stumbles. She has been practicing walking unaided in the back yard. Kaz tells me that the other day, at school, Caitlin walked unaided out to assembly and back to the classroom. That is a great step forward (pardon the pun) and worthy of a progress report.

Our instructions from the medical professionals at the last assessment were that Caitlin was to use the quadsticks only indoors, and to use the walker for outside trips. Seeing as she has been making progress with her walking, I have been taking her out on our Saturday morning shopping trips with her quadsticks the past couple of weeks. So far it has been incident-free. Until yesterday. As with every stage of Caitlin's recovery, there is a learning curve. It didn't take her long to become proficient with her wheelchair, and it didn't take long to for her to become proficient with her walker. One of the initial problems with using her walker at the shopping centre was handling escalators. Getting on and off while remaining upright was the tricky part that Caitlin had to learn. There were a couple of near disasters. Yesterday, it was time to bump the learning curve again. It was time to handle the escalators on the quadsticks. When we entered the shopping centre, going down the escalotor, Caitlin got on the escalator quite well, although the unco-ordinated way she did it meant that there was a potential for trouble. On the way out, I had my hands full of shopping bags as I stepped onto the escalator with her. She mis-timed the steps and had one quadstick on the first step, one foot on the second step, the other foot on the third step, and the other quadstick on the fourth step. What's the title of that TV show? 'Seconds from disaster'? Yeah, that about sums it up. As the first step rose up, the quadstick rose up, and Caitlin couldn't put downward pressure on it to support herself and down she went. As the next steps rose up, she was forced to do the splits. She dropped the second quadstick at the foot of the escalator, and with nothing to hang onto, and her feet getting further apart, she panicked and started to scream. Shoppers came running. I dropped our shopping and grabbed her, and the shopping went rolling down the escalator, tripping and blocking the shoppers that were coming to help. What a debacle. There was one man who called to me - 'you get her, I'll get this', and he gathered our shopping and the other quadstick. Once I had Caitlin righted, we met the man at the top of the escalator. I collected our shopping and thanked the man graciously. She was fine, no injuries except her pride. We went to lunch. Just another normal Saturday.

Quadsticks

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1209640237

Smiley Caitlin - in the news again.
Posted by Pauldos! on 26/04/2008

Caitlin was back at the Royal Brisbane Children's Hospital last week for four days for another assessment. They are happy with Caitlin's progress, and she came home with new walking sticks - single -point sticks. The quadsticks are gone. This is not as big a jump as the jump from wheelchair to walker, or from walker to quadsticks, so she is handling it without problem. She is much more confident walking un-aided around the house, and rarely uses the walking sticks indoors. She does not fall over any more frequently when walking un-aided than when she is using the sticks, so I think once she builds up a bit more confidence in her ability, she will start walking un-aided outside the house as well. All in her own time.

While Caitlin was up at the hospital, there was the grand re-opening of the refurbished 'Wonder Factory', which is the children's retreat and play area at the hospital. The Wonder Factory is run by the Royal Children's Hospital Foundation, the fundraising arm of the hospital, under the banner of 'Working Wonders'

. Caitlin featured on the Channel 10 news in a segment about the re-opening of the Wonder Factory, and is the front-page story of the latest edition of the Royal Children's Hospital Foundation newsletter (pictured below). She also features on the new poster for the Wonder Factory. Caitlin has been on TV a couple of times before, and featured in a few publications of the hospital. So, why does Caitlin get all these gigs? The newsletter's sub-headline gives away the main reason - it goes "Smiley little Caitlin has been visiting the Royal Children's Hospital since she was just three years old.". Smiley Caitlin. There was a commercial on TV recently for the Cerebral Palsy League, which featured children making wishes. At the end of the commercial, a little girl with foot braces and using walking sticks says - I wish I could walk like the others.... Caitlin has never said anything like this, and does not think this, at least not yet. She is perfectly happy with her lot in life. She does not see herself as 'different', or 'disabled'. She is always happy. She regards the trips to the hospital, the exercises, the walking aids as just her daily routine, just as other children view their household chores as just their daily routine. It is her 'there-is-nothing-wrong-with-me' attitude that wins the hearts of those that work with sick kids. As she is quoted in the newsletter - If I could have one wish, I would like a pet horse. It's true. On the way to the hospital last week, she made her mother and I laugh when she demanded - Daddeeeee, buy me a pony!

Caitlin - front page news.

Add Your Comment to This Entry Article link : http://www.pauldos.com/caitlin/article.php?article=1209877940

One year later...

(c)DOSBlog. by Pauldos! Software. www.pauldos.com
450 People Have Viewed This Blog.