Kitty’s CP Blog

Hello Kitty!

At last I get around to writing the update from home! It’s taken so long because of many things, but the unexpected 31 hrs of travelling really messed me up! I was clearly very tired when writing the last post too, what are Marlboroughs!!!! Clearly not a smoker either, maybe I should take it up, I could blame the smoke for my “fugginess”, but then I’d get a roasting from Dave and Philip (still stuck in Qingdao) about the evil weed. Hope you are coping with the haze out by the lifts guys!!

Finally landing in Cape Town, after 2 delayed flights, and a cancelled one, was a relief, although the mad drive across town to get to Ruby’s dress rehearsal for her 1st ever show was a little tense. We made it just in time, and I was so glad to be there for her, but the unbelievable stress levels from the journey took “many many” days to get over! I think the worst bit was right at the end, with Cape Town in sight, after being told I wasn’t on the flight, ripping into the poor airline staff, being told O.K. O.K. you can have a seat, to then being held for an hour on the tarmac with the unbearable heat and a very pissed off but thankfully not crying Kitty, and after all that (Emma had to get a later flight as she wasn’t booked on any flight…Simon can explain that one) Em lands 6 mins after me, having had a slightly less unpleasant experience! Why didn’t I just get on the damn later flight? 

Anyway, enough of all that. Kitty is loving being at home again with her precious big sister Ruby. She is still shattered from the experience, journey, treatments etc. but showing really good signs of improvement. Everyone we’ve seen has commented on how open and better Kitty’s hands are. She is reaching for things a lot more, and although far from accurate, she’s definitely getting there. We have spoken to her therapists here about stepping up the intensity of her weekly therapies, particularly over the next 3 months. We are so keen to make the most of the 50 million or so stem cells Kitty received in China, and the optimum time to do that is over the 8 to 12 weeks following treatment (so we’ve been advised). She has only had a couple of appointments since getting back, so we’re allowing for her tiredness etc and will give her a chance to get over that, plus the growth spurt she seems to be having, plus the cold she’s caught since getting back, before we ask for anyone’s opinions on what changes they think have taken place as a direct result of the stem cells.

One big thing I’ve noticed is Kitty is having some real tantrums! It’s like she’s turned 2 already! She gets so angry when things aren’t going her way, and I swear the other day she was trying to coordinate her hands to get hold of Simon’s arm, to give it a bite!! She also got really hacked off with Ruby when she picked up Kitty’s book and started looking at it herself. Typical older sibling just sat there and laughed at her, but in poor little Kitty’s case, there wasn’t a damn thing she could do about it! Watch out Ruby, she will one day!

Well, my lovely buddy Em left for London on Saturday and we all miss her. Don’t envy the weather you’ve flown back to Em, it’s been another bloody gorgeous day in Africa today! The beach was just hell, saw at least 3 other people and a dog. You know me, can’t stand the crowds. Can’t believe it though, not one of them looked at us, not even the mangy dog, and I was just getting used to being stared at. Yet another thing I’ve had to adapt to since being home! 

The rooibos tea is calling as my hot bedtime beverage. No more of those lethal hot chocs I was main lining in Qingdao (that’s a sentence I never thought I’d be writing in my lifetime!) as the summer is a coming and I need to drop a few pounds as the americans say! Can’t blame childbirth any longer, she’s 20 months already!

As mentioned, the next 8 to 12 weeks is going to be intensive for us and little Kitty (because we were getting so bored with our uneventful sedate lives) so I will try to keep this blog updated, especially over that period to monitor Kitty’s progress. I might not write as often as I did in China, but there will be postings, I promise.

To all the wonderful people I met in China, I send a big hello and good luck wish whether you are back at home, or still doing the time there. Take care and thank you to each of you, you are all very brave and inspiring people and although I wish I hadn’t had to meet any of you, the circumstances we find ourselves in, I feel very honoured to have gone on a short but hopefully very worthwhile journey with you.

On that note, goodnight from me and little Kits, and Daddy Simon and big sis Ruby 

x

3 comments November 25th, 2008

The Last Supper!

Not much of a last supper, pizza and a litre of coke! We did have a gathering last night though, and the new gang of “in-mates” are great fun. Shame we didn’t take any pics!

So, a final posting in China, unless we try to blog in Hong Kong airport, as we do have a 5 hour stop over. I might try to do that as this will be a short posting with a few pics, because I still have a patient satisfaction evaluation form to fill in, and the scrap book to do. This is a really nice idea they do here. At the end of everyone’s stay the staff get you to add to a scrap book as a collection of people’s stay here. I have managed to get a few pictures printed (that’s another whole story/experience) and stuck them in the book, and written a few thankyous. It is so good to read other peoples experiences.

Well, Em’s is off for a herbal……..she thought she’d be able to buy Marlboroughs here but when she bought some chinese cigs, it wasn’t until she opened them that she realised they were herbal ones!!

Will post some pics now, then do the scrap book.

Can’t wait to get home, only one more sleep, Yay!!!!!

2 comments November 16th, 2008

Final Spinal!!

 At last I can write this title! Atleast I didn’t put “It’s the final countdown” and add the music on to it! Simon would’ve disowned me.

Anyway, here we are, and it’s actually very exciting. Kitty is doing so well, and makes everyone here really smile, so although Em and I might not be missed, I do think my brave little girl will be.

The day started with more of a rush than usual because Kits woke early and I brought her into bed with me and managed to get her to doze off again. The next thing I knew, Em was knocking on the door and it was nearly 8a.m. Kits was supposed to have finished eating and drinking by 8 and I hadn’t given her any breakfast! Managed to shovel that down before Owen came in for the final Electro Wave therapy, followed by acupressure, also for the last time, HOORAY! Kits then had an assesment with Owen, but no actual P.T. and during all this I managed to shower and dress, but not eat anything myself. I think Em and I eventually had a cuppa and breakfast around 11a.m.

The day started to really kick off when the nurses came in to put in Kitty’s I.V. for the glucose drip, and general. They just couldn’t find a vein to use, and after 2 attempts in her hands, they tried a foot. When that failed, they said they would get a paediatric nurse to do it! Of course by this time Kitty was really screaming. The Emla cream we were told to bring to numb the pain, has to be applied half an hour before the needle goes in and only lasts about 45 mins. Eventhough I smothered both kitty’s hands and feet, it really didn’t help. It certainly wasn’t worth the R100 plus, I think I just expected too much from it. However, all this was in vain, (or not…..sorry!) because when the paediatric nurse finally came to the room, she prodded and poked her some more, then said the only place to put the i.v. would be Kitty’s head! I wonder if that was just because she could see a lovely big blue vein popping out of Kitty’s forehead from the screaming she was doing! By this time Emma and I were feeling pretty stressed, and just couldn’t do anything for Kitty that would soothe her. Aunty Em jumping around with Stanley (toy dog) on her head just didn’t do it!

When the nurse started to shave a bit of hair off, that just finished me. I felt so terrible for putting Kitty through this and not being able to explain to her that I was doing it with all the best intentions, to help her in the future. The I.V. eventually went in, of course much more screaming, and it took 4 of us to hold her down. Our previous experiences weren’t as bad as that, and I just had to cuddle her as much as she’d let me.

By this time it was only half an hour before her stem cell treatment, so the glucose drip had to go onto the I.V. Well, she took one look at the nurse walking in and started bawling again. The amount of sticky tape they placed over the I.V. to keep it in place is going to give her another trauma tomorrow when they come to take it off. It’s probably going to rip a few eyebrow hairs and a clump of head hair out, and she is going to scream!

Very soon, Wendy (one of the translators) and a nurse came to take Kits down to the O.T. We have to wheel her on her bed, into the lifts (through the fag fog that obscures the No Smoking signs) and down to the 4th floor. She seems to like this, and was smiles all the way! After being in the Operating Theatre for about 5 mins, the power cut and plunged us into darkness. We all just stood there listening to the theatre staff running around shouting at each other. I really thought we’d be taking Kits back upstairs to wait it out, but luckily after about another 5 mins, the lights came on again. Kitty looked up at me as if to say, “is that it then?”.  I said goodbye to her as she went to sleep under the general, but strangely didn’t feel as emotional at this pont as I have done previously. Maybe I was just wrung out from being so upset over the I.V. ordeal.

Anyway, after about 40 mins, and a very rushed lunch for me and Em, we went to get Kitty, and although she was much more drowsy than before, she was absolutely fine and just about managed a smile. Good old Stanley was there with her the whole time, as he has been for all of her spinals.

The six hours of lying down has come and gone, and Kits is fast asleep. By the time she gets up in the morning, she will again have managed to stay lying down for about 18 hrs straight, which I’m quite happy about. I could’ve got her up at about 9p.m. and she was awake then, but she was so tired and ready to sleep, so that’s what she’s doing.

I need to hit the sack too, with a hard thump, as I’m knackered! I said I’d include some pretty shots on this posting, so here they are.  Roll on Monday!!!

Love to all of you, Deb, Kits and Em x~x~x~x~x

8 comments November 14th, 2008

Looking Good!

Hi again everyone.

Em and I have taken a few more shots as you can see. These ones are to show all the different therapies Kits is doing, and hopefully tomorrow I’ll get around to taking some pretty pics for you. 

Kitty is definitely getting stronger, and her head and trunk control is better than 3 weeks ago. She manages to stay upright in her baby walker for much longer, before she flops to the side, and her stepping action is just brilliant. She does still flail around a bit when she gets a bit stuck or can’t steer the walker to where she wants to go, but having said that, her control of it is so good. She can turn that thing so quickly now, and literally runs away from you down the corridor shrieking like a banshee! I hope that continues at home because we won’t have the amazing floor space they have here, which she is enjoying so much. I think she thinks everyone is just here for her, as she bombs around in her walker, wandering into peoples rooms if the door is open! The other day she started following the tribe of doctors on their rounds checking on the patients. She looked like a little mascot following 5 Doctors into Mike’s room to see how he’s doing!

She is continuing to roll far more than she used to , but mostly onto her side. She seems to feel comfortable lying on her side instead of her back all the time, but sometimes she’ll roll all the way onto her tummy, but still manages to get her arm wedged under her. It doesn’t take much help to get her to bring her arm out in front and a couple of days ago she did some lovely leaning on her fore arms with her head up looking at me. Not for long though, her head is just too heavy and she drops it back onto her arms! That will just be a case of getting her to do that more often, and gaining the strengh I’m sure, because she understands what she needs to do to keep her face out of the bed clothes and look up at something more interesting (like the telly!).

Only 5 more nights before we get on the plane home! Just can’t wait. Kitty will have her last Spinal injection on Friday, then saturday to stay close to the hospital and take it easy, pack most things, sunday to do anything else before we leave (more gift shopping perhaps) then monday to say goodbye, we are out of here!!!

Kitty has now woken up and she needs to have lunch before our car arrives to take us out, so will sign off!

Will be seeing some of you very soon,

Debs & Kitty and lovely Em who is doing a sterling job and learning fast!!!!

4 comments November 12th, 2008

Post Op Pic!

finally pictures on blog!

Hello All, hooray for Em, she managed to gat a pic on here of little Kitty in her big hospital bed, having to lie down for 6 hrs! It takes alot of distraction of course, but we get through it and she’s a little star!!!

The problem Em found was all my images were too big for the site to cope with, so she’s actually changed the settings on my camera, and we will snap away tomorrow to bring you more Kitty images. As you can see Ruby, the lovely pic you drew for Kits is on the wall next to her bed, along with a photo of all 4 of us. Whenever I say “Where’s Ruby, where’s Dada?” she smiles and turns her head to the picture. She does understand and I know will be very happy to be in her own room again with Ruby asleep near her!

Will write more tomorrow when we have more pics. Time for bed. Not done much today, but it’s still tiring.

Miss you Mum, thanks for all your hard work and support, you are a star. Hope the journey back wasn’t too bad, and enjoy the curry, not jealous at all!!

Love to all

Deb and Kits and Aunty Em x

2 comments November 10th, 2008

Mum’s last night!

Here already, can’t believe it. Wasn’t much of a last night for Mum, no big send off, and (as usual) she even had to cook! Very good it was too….chicken stir fry and noodles. We even used our chopsticks. Think Em and I might order out next week!!!

Em’s first full day here too, and what a day. Her tooth started aching at 10 ish last night, and quickly turned into unbearable pain. 8 painkillers later, (by morning) she knocked on my door at the hospital with “Got any serious pills!” To shorten the story a little, one of Kitty’s docs sent her to another world (downstairs in the hospital) where a dentist was pulling teeth, and told her he needed to drill! No chance mate, (he had two unsterilised instruments, and a display cabinet of false teeth) so he drowned a piece of cotton wool in who knows what, (clove oil possibly) and rammed it into Emma’s tooth cavity. On departing she was told the pain would come back! REALLY!!! Anyway, luckily Carolyn from Memphis has a huge stock of antbiotics and painkillers, so, fingers crossed she’s sorted. If not she’ll head down to the International Dental Practice with much better results hopefully!! This is a tip to anyone reading this blog before coming to China, get organised with all medication you may need for yourself and the person you are caring for! The language barrier makes it so hard to explain things, and you really don’t want to experience a trip to A & E here if you can help it. We are in luxury on the V.I.P. Ward in comparison.

Got an early start in the morning. Kits starts electro at 8.10, and the bloody hot water for a shower doesn’t come on till 8, so that’s going to be fun! Kitty will also be having her fourth stem cell treatment tomorrow at 2, so we can’t feed her after 8a.m. either. Mum will have to leave around 1p.m. for her flight to Hong Kong, so all in all it’s going to be busy.

A few of the guys here had stem cells on friday, which were late, and after not eating for some hours, they were told the cells would be late. Apparently flights weren’t leaving HK because of fog, so the poor patients here were really starving and not knowing if they could eat. It’s not like they could just postpone till the next day either because the stem cells used by Beike who carry out this treatment in China, use fresh umbilical cord blood cells, so they had to be used as soon as they got here. Anyway, one of the guys got fed up waiting and ordered a Chinese takeaway, 2 hrs before his treatment! Haven’t heard yet if there were any side effects, but come to think of it, I haven’t seen him for a couple of days! 

The weather looks good for tomorrow, so that shouldn’t happen again. Don’t know what I would do with Kits in that situation as you can’t explain to a 19 month old that she can’t have anything to eat because she’s about to be injected with 10 million stem cells and she might be sick!!

Time for my French Vanilla flavoured hot chocolate, the concrete slab is calling.

Thanks again for the messages, I love reading them. Deb x

2 comments November 9th, 2008

Emma’s Arrival

Aunty Em arrives to help in about 1 hour, so will have to do very quick update!

Physical Training this morning was so much better because I just muscled in. Not to say the actual excercises were of any better quality, because Owen was still following his little schedule, but Kitty was much easier to distract and she didn’t lie down at all, so just much happier.

I have managed to download some pics on to facebook, but I must add more, and put some captions on them so you can understand what’s going on!

Usually when Kts wakes me in the morning (any time btw 6.45 and 7.30) I can usually lie low for a bit and she just babbles until she’s bored, then starts shouting which of course is my que to roll off the concrete slab! This morning however she was really shouting so I peeked over the end of her bed, and she had rolled over on to her tummy. Didn’t take much encouragement to get her to roll back, and then she was all smiles!

Mad taxi ride is calling, hope Em’s is up to it after her long flight! I can’t believe there aren’t more traffic accidents here (seen a couple) there seems to be no real rules to follow, drivers don’t let anyone else in and they certainly have no concern for  pedestrians.

So, wish me luck ………

3 comments November 8th, 2008

3 Down, 2 To Go!

Kitty was fine after her treatment yesterday, although I think a little sore today. Her back is quite bruised from where the needle goes in, but at least she doesn’t have a headache (or at least I’m quite sure she doesn’t!). She was very ready to get up this morning, because by the time she had done her 6 hrs post op of lying down, it was time for her milk and bed, so she was actually lying down for 16 hrs, which can only be good if you want to avoid a spinal headache!

She was quite entertained last night anyway, she had two boys in her bed!! Because it was Dawn, Richard and Rena’s last night (with gorgeous son Jakob) we decided to do a cook up together. Both Kitty and Luke (another little boy, same age as Kits who’s here with his daddy Clint) had had spinal treatments, so as they both had to stay flat, and we wanted a farewell meal together, we decided to wheel Kitty to Lukes room on her bed, gently transfer Luke onto the bed with Kits, and wheel them both to the dining room! Jakob was there too so Dawn put him on the bed with the other two! It was so cute and I did get video footage of it.  What a shame they’ve left, we were just getting to know them and have a few laughs. Clint and Luke leave on saturday, so Kits will then be the only baby left on our floor. There are still a couple of younger ones upstairs but they are Romanian, so again theres a language barrier.

Kits was very unimpressed with the Physical Therapy today. She took one look at her therapist Owen, and started crying. She had already had 1/2 an hr of electro wave, and 1/2 an hr of acupressure, so she was really unhappy about going straight to P.T. She was upset at first, but soon became inconsolable. We tried for quite a while to calm her down, but nothing was working so eventually I said we had to stop. Through an interpreter Owen was explaining that even if Kitty is crying he must just pursue with the therapy, and ignore her crying. I had to then explain that there’s only so much you can do when  the child is upset, and when she’s screaming and just choking with crying, forcing her to do leg squats is not going to achieve anything but make her even more upset. I was trying to explain how physio works at home, with the use of all sorts of distractions and encouragement, but here it’s set exercises, that are performed to a schedule, and are the same for each child. I think he understood, and our next P.T. we are going to do more sitting and upright stuff, and I’m just going to muscle in and take over a little without trying to step on any toes too much. We’ll see how that works. Oh for good physio each day, like I said before, that would work wonders!!

As you can tell, I’ve had no luck getting pics on this blog. I’ve managed to download onto the computer, but just can’t transfer any images on to these pages. Very annoying, I’m sure it would be good to actually see shots of Kits in all these treatments I’m describing.

Time for lunch and Kits is asleep, so I’m going to grab the opportunity to sit and eat something!

Many thanks for all the lovely comments, I check them every day and it’s great to hear from you!

X

2 comments November 6th, 2008

3rd Treatment today!

2nd Spinal, 3rd treatment in total.

 So, the process starts again with i.v.’s being inserted, eat by 9a.m. for treatment at 3p.m. and try and kill time in and around the hospital, not giving Kits anything to eat or drink!  I wasn’t given any warning today about the i.v. so I didn’t have time to put the emla cream on her hands to help numb them. Usually I’m given half an hours warning, so I can apply cream on the back of her hands and her feet to take away some of the pain. Both hands and feet are covered to give options!

Kitty seems to be waking up tired, eventhough she’s sleeping really well and in a good routine from day 2. Docs came to see her this morning and said she must rest so I pulled her Physical Therapy today, and will try to get her to have a good sleep before lunch. The physical therapy is very physical and not what we term Physio. Kits is really put through her paces and it seems to be strength training and weight bearing exercises rather than controlled movement and correct posture or ability patterns. The combination of stem cells and really good physio 5 days a week would be amazing. Shame we couldn’t bring our own physio therapist with us (fancy a trip to china Caro?)!!!!!!!!!!!!!

Kitty rolled again this morning, which she has been doing since we got here, but the difference today was that she went from being on her tummy (and not liking it as usual) to rolling herself back onto her back whithout any help at all. She always used to need a bit of hands on encouragement! She was so pleased with herself too, as she should be!

Kitty’s waving is getting better and better too. For a few weeks now she has opened and closed her hand (mostly the right) when saying goodbye, but last night when Mum left for her hotel she actually lifted her arm right up and did her little wave. It was so cute and clever, she’s trying so hard, and wonderfully for us, she understands everything. I asked her where Ruby was today (bit mean I know) but she really looked around the room, looked over at the door, then smiled and looked straight at the photos stuck to the wall. She loves looking at the pics I brought from home of us all, but she seems to particularly like looking at photos of herself! Typical girl!!

I’m going to look at the web site you sent details of Mark, to see if I can get some images on here.

3 comments November 5th, 2008

A Week Down,Two To Go

So, we’ve survived the first week, and it’s been fine. Not too much to report today except Kits managed to pull her I.V. line out and there was blood everywhere. She was just trundling around the room in her walker, and as mum glanced at her, Kitty looked up, smiling away with herself and the walker tray covered in blood. Mum went to get the nurse who didn’t really understand what mum meant, so she came to the room with 2 cotton buds to clean Kits up!!! Of course it took a lot more than that! Anyway, she wasn’t fazed and just kept trundling!

A couple of families have left (hi Brooke, Kris and Dianne!) and more are leaving at the end of the week, so things are going to be somewhat dull around here. Just in time for Emma to turn up!!! Sorry Em, not much of a social life to offer you here so hope you’ve had a rocking time on safari with that mad Kiwi woman!!!

Kits has had a bit of a high temp today, but other than that she’s pretty jolly. We are out for a Hot Pot tonight with some of the other guys we’ve met here, before they head home. Apparently it’s very good. We also went to the Holiday Inn yesterday and had quite a swanky meal. Actually Ange and Andy, the local beer  ”Tsingtao” is really good! Had a few of those as I can’t get a gin and tonic!!!

Next day:

O.K. So couldn’t finish the blog when we got back from dinner last night (which was so exellent and really good value). Not because of the beer, but because Si and I were trying to Skype and we kept losing sound, so as usual we spent half the time shouting “Can you hear me now?” and getting very frustrated. Anyway, got to see my Ruby Tuesday, but it did make me homesick and now really can’t wait to get back to family life. Mind you, some of the homesickness was also because Si and Ruby are visiting in England, so where do I feel homesick for? England or S.A.? Think it’s wherever my little family are!

A couple more people have arrived for stem cell therapy, but they are adults. There won’t be any more young families coming, probably because of the closeness to Christmas, so the next two weeks are going to be long! I have been chatting to an American lady here who had a car accident 8 years ago, and was paralysed. Her story is a heart rending one, but she says her trip here is having more rapid effects than the last 8 years of therapy She can now move her right foot, and can actually feel the muscles in her legs physically working, which she could not feel before coming here. She also said her balance has improved greatly, which is something Kitty really needs to achieve. It comes down to core strength, control and coordination, which is all I’m hoping for at the moment. The day Kits can sit un aided and play will be huge for her, and us. Speaking to this lady today gave me great encouragement, because it’s so positive, even though her injury and physical issues are very different to Kittys.

Kitty’s other therapies are going o.k. but this week her times have changed so she’s doing stuff from 8.30 a.m. to 11.30a.m. by which time she is exhausted. She was great with the acupressure this morning, but by the time we were half way through physio, she was just getting really upset, which of course makes it impossible to do anything effective. She is then strapped into a standing frame for 20 mins, and she actually nearly nodded off standing up today. Think we’ll be requesting another change of schedule soon. It’s great for mum and I in that we can now go and do something for the afternoon, but if Kits is just getting upset and exhausted, then it really isn’t any good.

If I could get some pics on here, I’d love to show everyone where we are and what Kitty’s up to, but I’ve had no luck so far. Will try to download some again later.

Off to the market now to be stared at. Think I’ll by some huge fake Gucci sunglasses and just kid myself I’m a celeb!!

2 comments November 3rd, 2008