Posts filed under 'cp'
Well it’s been non stop since getting home. Between catching up, my grandmother passing away, than the arrival of our new baby, and now being extra busy at work with the Sharemarket crash.
Corey is doing great. He is still showing improvements. They are little steps overall but big steps for us. His physio confirms he is showing improvements, but isn’t totally conveniced that he wouldn’t have had these improvements without the stem cells. None the less the child developement unit have all been very supportive. When we arrived home his torso strength has shown improvement, his left hand has shown improvement and his talking has gotten better. Since being home his overall strength is improving, With assistance with his legs he can now crawl and bear his upper body weight on his hands, he was to weak to do this before. His balance is improving.
For Corey we think we are still in the early days. His 90 days doesn’t kick over till early December. He still has tightness in his legs, especially his right leg. We so hope that this will reduce with time, it would really help him with his walking. I have been doing home physio with him almost every day.
We get asked all the time, if we believe that China has made any improvements. My answer is he has and is showing improvements. The only way I could be totally sure of how much of this China has caused would be if I had two of him and only took one to China. The whole China experience has opened our eyes to what we can do to help Corey help himself, through alternative treatments, speaking to other people about their experiences etc.For this alone it was all worth while. We haven’t yet purchased a hyperbaric chamber for him, but we are about to, we are just holding off for the markets to settledown and the currency to get back to a reasonable parity.
Birth of our baby girl. Bella Concetta (after our grandmother) was born on October 14. Everything went well and she is beautiful. Both Corey and Jared absolutely adore her. Corey loves to sit beside her and rock her to sleep. He loves to watch her have her baths and when she crys he says, ‘Bella wants her mummy’. We are just so grateful for her safe arrival and just how well her two older brothers adore her. Mum is healing up well and loves her baby girl. She is so wrapped that she can now dress her in pretty dresses and pretty shoes etc. In fact Bella’s wardrobe has more clothes in it than what Jared and Corey have combined. Rosannes response to that was, we better get use to it because girls love their clothes.
We will keep you posted.
December 8th, 2008
We have been home for 5 days now and are quickly getting back into routine. Mum & Jared are very happy to have us home again and the feelings mutual. Mum was very impressed with Corey’s ability to sit unsupported. When we put him in the sitting position and stay close correcting him for a minute or so, he relaxes in that position to the point now where we can move back from him. We need to make sure that if he does fling himself back that he can’t hurt himself. This is a big improvement for him. He can now play with his brother in the sand pit (picture below), sit and play in the sand on the beach and much more. I think this has given him more confidence in himself as he reaches out more and tries more things.
Mum was also impressed in how he can lift his walker when turning and how much better control he has of his left hand (where previously this hand was fairly tight). He can now hold a mug with two hands and drink independently, where previously he had to use a sipper cup. He’s still talking lots, we have to be careful what we say around him as he repeats things constantly.
He had his first Physio session on Friday. He cooperated well with Terese. Terese works a lot on his coordination, where in China they concentrated on his stretching, in particular his legs. Terese noticed the improvement in his torso and we are all looking forward to the coming months.
Once again thanks to everyone for your comments they were very supportive.
September 13th, 2008
After 33 days in a hospital in China we are ready to return home. We have been doing the rounds saying goodbye to everybody. Corey’s back pain must be getting better as he is walking for longer periods. While packing last night Corey was watching teletubbies and he was singing along with a song and clapping. I noticed that he was clapping moving both hands. He would previously clap moving his right hand only as he has more tightness in his left hand. But he was moving both hands.
The improvements to date that I believe Corey has had are:
Speech has improved however I can’t be certain that this has happened due to his treatment here. Torso strength, this is definitely an improvement that has happened here due to his treatment. Alert, he is more active, can’t sit still when holding him, wants to touch everything. Better hands movement and control.
It will be interesting to see once we get home what mummy sees as she will only know him from when we left home and should be a better judge. Based on what I have been told he should continue having progressive improvement and the stem cells should be in full swing in approx. 6 months.
As mentioned earlier, the staff here have been very kind giving Corey lots of hugs and kisses. They will be missed. But we can’t wait to get home. Below are photos of us saying our goodbyes to the PT guys and doctors.
September 2nd, 2008
Corey had his last treatment on Wednesday, which was a spinal. He’s got the process all worked out. He tolerated it all pretty well until we got to the operating theatre. Once we got their he didn’t want a bar of the anesthetic. He screamed. It doesn’t hurt, they put it in through the IV that’s already in his hand. But he put up a fight, once the drugs kicked in he was asleep. He was fine waking up, looking around to see where I was. For the first 3 hours he was relaxed. He lay still however he didn’t go to sleep. Then he started getting restless. I thought he might be hungry so as it approached the 4 hr mark I made him something to eat, but he didn’t want it. He was getting worse so I called for the doctor. He started really crying and began vomiting (not that he had anything to vomit except stomach acid). By this stage the doctor had arrived. He arranged for Corey to have a injection in his leg to stop the vomiting and calm him down. This took about 20 mins to kick in. Once he calmed down his eyes got heavy and he eventually went to sleep. The doctors believe he had a reaction to the anesthetic. I thought it was strange as he had already had 3 before and didn’t have this reaction. The doctor said that people can react differently following each treatment. Perhaps it was because he got so upset when receiving the anesthetic. The next day Corey was feeling better. As the day progressed his appetite returned to normal and he was fine. They cancelled his PT for the day to let him have a good days rest. Since than we have continued working on our PT. His sitting up is getting better all the time. He is actually trying to sit up in bed on his own. He isn’t succeeding yet but the fact that he is trying really shows how much more aware he is of his front torso muscles. He pulls himself forward in the stroller now which again he wouldn’t do before. I am slowly getting a little further away from him once I’ve put him in the sitting position.
Unfortunately the walking isn’t progressing that much. He seems to still have some discomfort when he weight bears in the standing position. I asked the doctors about this today and they said to not push to hard with the walking yet as he may still be getting lower back pain where they did the injections.
We have one more day of PT (Monday) and than on Tuesday we catch our plane home. I plan to do one more update before departing China. Than I hope to keep it up (most likely less frequent) from home.
Your comments have been very much appreciated by us both and we look forward to getting home and catching up with you all again.
September 1st, 2008
Corey had his IV on Friday and all is well. I brought some reading books and I think because he’d done it before he wasn’t scared. We read our books, they hooked up the stem cells to his IV, once they were finished we went back to our room and laid down. We took it easy for the rest of the afternoon. That evening he was restless. After going to bed he kept waking up restless as if he couldn’t get comfortable no matter what position he lay in. I would pat him back to sleep and in a few hours he would be up again with the same thing. I eventually gave him some panadol and that seemed to settle him and he finally slept right through till morning. I didn’t know whether it was what he ate that made him restless or if it was the IV. I asked a few of the other parents and they said that they had experienced similar, so I am guessing it was something to do with the IV treatment. The next day he was fine. I am always keeping up the fluids but that’s not a big deal with the IV treatment and patients generally have no side effects. So since we didn’t have to worry about any recovery we have been working on our PT, acupuncture, and walking, pushing just that little harder. I also met a mother and daughter (age 13) from Roumania and this is their second time to China for stem cells. We were speaking through another Romanian patient who could speak English as she didn’t speak English. I think her daughter has CP but they don’t call it that. She kept calling it spasticity and little to no speech. She said her daughter was born like that and that they didn’t realise it until months later. They were here 18 months ago. When they had finished the first full treatment of stem cells they were disappointed as nothing seemed to happen. But after a few months she began improving rapidly. Her speech improved to the point where she can be understood well. She is walking with assistance (her mother walks in front of her holding her hands). She couldn’t do that before. So they came back for more. I am really happy for her.
Corey’s acupuncture today went well. He only cried a little when they put the needles in, then he settled down and didn’t cry at all when they took them out. Hence because he behaved so well I got the opportunity to take a photo. Look closely and you will see the needles in his head. The wires taped to his arms and legs are the electric wave therapy.
I would like to add just how caring the doctors and nurses have been. When we first arrived, it’s very hard as you don’t know anybody and even though they have translators the language barrier is still a issue. Its at this time that the other patients and carers are of so much help because they know how you feel as they have only just been through it themselves. But now I am getting to know the staff better, our communication is much better and I’ve become more accepting of their different ways of doing things than how we do things at home. I now try to do my bit and help out the new patients arriving to help them through the first week.
Once again thanks for all the comments they are very much appreciated.
August 25th, 2008
Last Monday, Corey had his 4th treatment which was another spinal (3rd spinal). He did well. It was in the afternoon again this time, following the treatment he had to lay still again for the 6 hours, this time we didn’t request any Valium as it didn’t make him sleep. He was fine, he behaved and laid there, so long as I positioned the laptop playing Elmo where he could see it, he was happy. (I think he’s become a TV junky). After 2 hours I was persistent with the water and after 4 hrs he ate well. He finally went to sleep about 8.30pm. The next day he didn’t have any headache, he did PT and over all was fine. We still took it easy to ensure a full recovery. The doctors came during the rounds and advised that when the did the procedure they found that his pressure was low from the previous spinal (which we already knew from his reaction) so upon replacing fluid they added slightly more to return the pressure back to normal. It worked because his recovery was probably his best one yet. The doctor that did it is a Doctor Ma, he’s slightly older, very pleasant to talk to and can speak some English. He appears to be training the younger ones as they all follow him and after he has asked about Corey he turns to the rest of the doctors and speaks away in Chinese. He did his first spinal and I am hoping he does his last spinal next Wednesday. Corey has a IV treatment tomorrow, which isn’t as invasive and doesn’t require him to go without eating etc.
Today, Corey actually leaned forward in his stroller to reach out and grab his balloon. He’s never leaned forward in the stroller before. What normally happens is his bum slowly slides out of the stroller. This definitely confirmed that his torso is getting stronger. I generally don’t strap him in the stroller if I am not going far as I know that he doesn ‘t lean forward, but today I had to strap him in because I was worried that when he leans forward he will loose his balance and fall forward head first into the floor. Currently Corey has had 60 million stem cells added to his system(between 10 & 15 mil per treatment) Apparently it takes 6 weeks before the stem cells begin to differentiate (The process whereby embryonic cells acquires the features of a specialized cell such as a heart, liver, or muscle cell). So technically the stem cells haven’t done anything yet. However when they do the transplant they use Neural Growth Factors which can give signs of improvements. Its appears to make Corey alert and energetic, he can’t sit still. So really it won’t be until early October before the stem cells really do their job. But I am not complaining, its really great to see Corey so alert and energetic.
I have attached a photo of Corey in PT today. Notice his cooperation, thanks to intense concentration on his teletubbies movie.
August 22nd, 2008
Sorry its taken so long to write again but we have had a interesting few days. Corey had his second spinal last Wednesday. The spinal injection was early this time. He was scheduled for 10.30am. He was in and done by 11.30am so it was lay still till 5.30pm. This was difficult as it was daylight and he didn’t want to sleep even with the Valium. Anyway after 5.30pm we had something to eat. He ate well and eventually went to sleep. In the morning he had breakfast in bed so as to keep his activity to a minimum to help with his recovery. At approx. 10.00 we got up to make some pancakes and Corey became unhappy and unsettled. I gave him a bit of pancake and he ate it and started gaging so I took him back to the room for a drink. He had a drink and began crying and gaging again and then vomited. I cleaned him up and laid him down again. Laying down he would settle it was only being upright that he was sick. The doctors came and said that he has a spinal headache caused by possibility low intracranial pressure. This is why he needs to lay still for at least 6 hrs and drink lots of fluids following treatment. When they do the treatment, they actually remove 3mils of spinal fluid for testing and replace it with fluid containing the stem cells. This has to be exact to ensure that no intracranial pressure is experienced. The way they inject the spine (angel etc) can also affect how the patient feels.
They thought it was best if he go back onto a IV for fluids and keep his activity to a minimum. So we had to put a IV back into his arm, and considering that he wasn’t feeling well anyway he got quite upset. They administered some Valium to calm him down. By this stage I felt like I could do with some myself. Anyway the Valium worked and he was a lot more relaxed. We watched a lot of Elmo. The next day he seemed fine but to be on the safe side they continued the IV fluids. I was able to get him up and stuff, but their is little you can do with a 3yr old with a tube coming out of his arm and dragging around a IV bag. Corey was bored. He felt fine and couldn’t understand why he couldn’t do things and to top it off where they put the IV was very uncomfortable. Anyway by Saturday morning Corey was fine, he was scheduled for PT but I explained that he couldn’t do it with the IV in his arm in such a uncomfortable spot. So they removed the IV. By lunch time Corey began feeling discomfort again giving the same signs as he did when he had the spinal headache. So it was back to bed and drink lots of water. You know how hard it is to get a three year old to drink water even though he is not thirsty. After his midday sleep he woke up feeling fine, so we again kept the activity to a minimum and drank lots of water. Today is Sunday and Corey is back to normal. No problems all day. Tomorrow Corey has another spinal. His fourth treatment overall. I am hopefully prepared with my dozen bottles of water. They say that the stem cells in his system are increasing in concentration which is even more important to make sure he is very well hydrated.
His Progress- Well its so hard to tell because just when he is feeling better following a treatment he has another one. This is another reason why they say not to expect anything while your here. But in saying that, his talking is getting better, his trunk control seems to be a little better also. The photo below is of him today playing with blocks. He was actually sitting on his own and playing with one hand and supporting himself with the other. Something that we have been working on at home for sometime. I still had to be close so as he felt secure as he will still throw himself back when he thinks he is about to fall. Also we did some walking today with his walker. It was a challenge to get him to use it again since he has had a spell from it for a few days. But he is starting to get the turning. I have to place my hand in front of his chest as he hasn’t mastered the balancing while turning but he does the lifting and turning of the frame on his own.
Once again thanks for all the comments, they give us a boost of confidence and energy which is great.
August 17th, 2008
Corey had his first spinal injection on Friday. He was such a brave boy. He didn’t cry for the IV (thanks mum for the numbing patches), He went down for the anaesthetise and woke happy, looked at me and said ‘daddy’, like he had just come out of a wonderful dream. The procedure took a total of about 40 mins. The next six hours were interesting. Fortunately he was settled so he didn’t struggle to get up, but the Valium didn’t put him to sleep. I just laid beside him making sure he didn’t lift his head. He finally went to sleep at 7.45pm, so I went to the kitchen for something to eat and the fireworks were going everywhere for the opening of the Olympics. The next two days he woke fine but as we got up and did a few things he felt off, cranky and easily upset. He’s eating and drinking fine. Speaking to the other parents they say with the first spinal IV they take a little longer to recover. They recommend not doing to much for 48 hrs following the procedure.
We are starting to work out a routine so are getting more settled. I am working out where things are in the shops so our meals are becoming more appetising.
Today is Corey’s Birthday. When you ask him how old he is, he says ‘three years old’. We had pancakes for breakfast (Coreys favourite), then he opened his presents (he’s right into the present opening now) and played. We than made spaghetti for lunch (another favourite) followed by sleep time. By the afternoon Corey was feeling much better. After dinner we had a birthday party in the common room. Corey loved all the attention and everybody was so friendly buying him gifts and singing happy birthday.
Thanks to everybody for your birthday wishes. Corey is definitely missing home. Every-time I stop and talk to someone or they say hello to him he will ask me ‘who’s that’ (after they have left). He has a new girlfriend. Her name is Jessie (one of the translators). Every-time he sees her his eyes light up and he calls out her name at the top of his lungs.
The program for this week is PT in the morning and in the afternoon acupuncture, than electric wave therapy. His second spinal injection is on Wednesday afternoon.
August 11th, 2008
Its very strange, so much seems to happen in one day and yet the days still seem so long. Corey has PT (physio) every morning for approx. 1 hour, then in the afternoons he has Electric wave therapy for 20mins and between all this he gets visited by 2-3 doctors per day. Unfortunately Corey wasn’t all that co-operative for PT, but this is improving everyday. Its when they do stretching with his legs that he cries, as this hurts him, buts its also where he needs it the most.
Monday afternoon was Corey’s first IV injection. They put a IV into his hand, put a IV bag on (fluid) and then we went upstairs for the stem cells. They gave him a anti rejection injection and then the stem cells and he was ok for a little while but then he started to cry, and then really cry. It was upsetting. I was worried that he might be in pain for the stem cells, but he eventually settled down. The whole thing was only for about 20 mins in total but it seemed like hours.
Friday afternoon is his first Spinal Injection. He can’t eat or drink for 6 hrs before, and he will be sedated for the procedure. Following the procedure he has to lie still (like very still, no moving at all) for 6 hrs to prevent him from getting a severe headache. Also I have to keep his activity to a minimum for 48 hrs following. That’s a lot of Elmo movies. I have learned a lot from sitting in the common lounge area and talking to the other parents/caregivers about their experience to date. Everybody is very friendly and willing to help where they can. Some of their experiences have been eye opening. Some parents have had to basically lie on their child to keep them still for six hours. As you could imagine it was very traumatic for the child and the parent. I have gotten tips like, get him up early to have something to eat and don’t let him sleep all day so that by that time he will be tired anyway. Also request that he be sedated so that between the sedation and him being tired, he will most probably sleep for the six hrs following. No question about that, Corey will be sedated. I also need to make sure that the nurses give him liquids via IV before and after the procedure.
So have I noticed anything? Well its to early to say. He does seem to be speaking more in sentences. I think this is due to so much interaction and activity, which is good. Also I noticed that I don’t have to correct his index fingers when he holds his water bottle like I always had too. I noticed this that Monday evening because it was such a common occurrence. But this could also be from all the constant correcting finally paying off. I hope to give you a further update early next week.
Thanks for the comments they are really appreciated by us both. Also those parents from home, read up on hyperbaric therapy (HBO), apparently it can be very valuable following treatment at between 90-120 days. Also parents with children with CP who have used HBO have had improvements.
August 6th, 2008
The journey went well and Corey behaved well. He really liked the planes, trains and buses. Today was our settle in day. We still got lots done. We unpacked, met friendly staff, was shown around the floor of the hospital, were shown where to go grocery shopping, had Corey assessed by there physio (Jason), then assessed again by the doctor (Tony) who is preparing the stem cell treatment. I explained to Jason that if his sessions were to be of any benefit, he would need to incorporate play, as that’s all what Corey is interested in.
Tomorrow Corey has to give blood for testing and also urine and stool samples. I was a little disheartened today because I discovered some of China’s plumbing and building faults. Also the containers given to me to collect Corey’s samples were not sealed. I don’t know just how good the samples are going to be if the containers are not sterile. But before going to bed I sat out in the common area and spoke to some of the other people here who have already received treatment and the results that they (and others who have only just left) have had are incredible. So once again I’m keeping an open mind and going to try and get the most out of being here for Corey.
August 3rd, 2008
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