Samuel's CP Blog

At 8.15 this morning Sam had physio and standing therapy followed by acupressure. He usually doesn’t have acupressure until the afternoon but today was stem cell day which he had at 2p.m. The nurse came to our room at 12.30 to put in the cannula, which was good today, they got it first try. After that another nurse came to give Sam some medication to relax him while getting the stem cell. It worked really well today, he was out for the count within seconds. We went to the I.V room at 2p.m and Harvey and Trinity were there too. Sam had the stem cells without as much as a flinch for the hour, unlike the last 2 times which was the complete opposite. This evening instead of going out we cooked dinner, nothing fancy at all but it filled the gap for the night.

this morning Sam had his usual physio and standing therapy, it all went great today. He knows he has another 4 weeks of it so he has to stick it out! The weeks won’t be long flying by. He was in such a good mood today lets just hope it lasts for just a few more days. Acupressure was a pleasure today, Sam was laughing for the 30 minutes he was there. This evening we went to pizza hut for dinner, i was amazed by the size of the menu there. Sam had soup and ice cream. It was a change from the Holiday Inn and Chinese food. When we came back to the hospital we watched a d.v.d and played with Sam for a little while before settling him for bed.

Oh how i hate Monday’s…..! After such a nice weekend we were thrown into yet another morning of Sam not liking his physio. Sam had a really good night’s sleep, he’s more or less used to the time change now it’s just a pity i’m not This morning Sam’s physio and standing therapy was o.k for a change, i think he just might be getting used to the every day routine, he seems to enjoy it now. I think he’s after taking to Tom so hopefully things will get somewhat better over the next few days. No stem cell today so thankfully no cannula’s had to be done. At 1.30 Sam had his acupressure and all went smoothly he doesnt seem to mind it anymore, when Tom talks sam listens and smiles After the acupressure we went to the lotte mart with Sara, Danny and Harvey just to get a few essentails for Sam, then to the Holiday Inn again for dinner. Harvey was a little under the weather with a cold but all the same both Sam and Harvey love one another’s company!

Another free day today, we’re dreading the thoughts of tomorrow when it will be back to the gring stone with Sam!!! We had another good day today. Sarah, Danny and Harvey came to the park with us. It was good to have such a nice family with us. Harvey was singing all of Sam’s favourite songs to him, Sam loved hearing the sound of a child’s voice as he misses his brothers and sister at home…..
We had dinner at the Holiday Inn again, it wasn’t as nice as previous times but Sam seemed to enjoy it!

Today we have a break from all p.t, o.t and acupressure. It’s Saturday yay!!!!:) It’s so nice to have the day off, we can relax and don’t have to be cooped up in the hospital room for the day.Sam had a great night’s sleep, he slept after his stem cell until about 11.30p.m and had his supper. He then slept from 1a.m until about 8.45a.m this morning. Brekfast was hash browns and a veggie burer from kfc while Sam had a huge bowl of porridge and a juice oh and 2 hash browns, again his first time eating it. At 12.30 we decided to take a walk to the park, its only about 10 minutes from the hospital. The park is huge and really beautiful. There’s kids rides and boats, we didn’t go on the boats as Sam would have been out of his comfort zone and the crying would yet again have started. We must have walked around the park for at least 3 hours, the weather was lovely…it’s like our summer’s when we get one at home!!!!!! On our way back to the hospital we went to the Holiday Inn for dinner, proper food!!

Oh i hate mornings, especially when they start at 6a.m…! Sam had a great nights sleep, he went down at 10.30p.m which was really good for him as with the past few nights he’s not been sleeping. When he woke up we gave him rice krispies to keep him goin until later in the morning. He did go back to sleep for a little while, well until about 6.45a.m. He was hungry again when he got up and ate a big bowl of porridge. He was full of beans for a little while until we got to the p.t room!! He really dislikes p.t and Tom is very nice, a bit hard to understand but he tries his best. Sam cried for a solid 2 hours. All in all it was quite an upsetting morning. At 11a.m the nurses came to the room to fit the cannula for his stem cell transfusion today. It had taken the nurses a good 5 minutes to find a good vein, oh the crying, again!! I really don’t blame him this time as it can be sore having a line in. The nurse had got the right vein and had it in Sam pulled his leg away and there was blood all around the bed. Great the line wa sout so another good 10 minutes to fine a new vein. Eventually it was all done he could settle for a little while. His stem cell is due at 2p.m so we have asked if Sam could have something to calm him while he’s down in the i.v room as last time he cried for the hour we were there. So at 2.15p.m a nurse came to give him the medication and he was so relaxed for a while. At least there was no cryin while he was getting the stem cells. We met a couple from Liverpool while we were down in the i.v room. Sara, Danny and little Harvey.

This morning Sam had p.t and standing therapy which he didn’t mind for the first 20 minutes but when Tom had Sam in crawling position well all hell broke loose. He simply dislikes his physio sessions. Once time arrived for the standing therapy, he wasn’t so bad as there were another little boy who was having it at the same time and he had his personal dvd player with barney on it, so it kept Sam quiet for the few minutes that were remaining. After p.t we came back to the room to feed Sam, he ate a huge bowl of potatoes and soup which kept him going for a while, he even ate little pieces of pizza thwt we had ordered for lunch. I only gave him small pieces so it wouldnt choke him. He didn’t care for it very much but he still ate it. His appetite has gone through the roof these past few days. It was then time for his daily acupressure. He doesn’t really seem to mind it as much as p.t but all the same he does cry for a bit. The session only lasts for 20 minutes….. We went to the Holiday Inn thisevening for dinner, wow! it was really nice. Nothing beats a nice steak and mash :) Now i know where we’ll be spending our evenings….! The Chinese food is so different from home, the amount of oil they use in their cooking. I’m surprised how they don’t balloon in weight!!!!!

Tody started off at 5:30a.m with the little man crying, i thought he might sleep for a little longer this morning, that was only wishful thinking. I fed Sam his breakfast at 7a.m whichwas 2 weetabix, a bowl of rice krispies and a bottle of juice. I think i’m going to try him with his flexi cup today see how he gets on with it. At 8a.m we walked down to the p.t room for his daily p.yt session, oh how i really love this hour…..:( Sam started to roar the house down the minute he started, just the strete few stretches which he should be used to from back home, but no he was having none of it. Tom then positioned him into crawling position which sam was not at all impressed and once again he was crying, i honestly wouldnt blame for crying so much during p.t, here p.t is torture unlike home where the therapists are so gentle and easy going, but hey if physio here is going to help Sam in any way then the show must go on. After p.t he had standing therapy for 30 minutes, which was the longest 30 minutes ever, he cried so much that eventually he tired himself out with no more tiers to cry. We finished up in the p.t room and were walking back to our room with a child who was full of beans once he was away from the therapist,once we got into the room he was hungry again and had a full bowl of porridge, something he never eats. Dr.Apple visited sam aftre p.t today, she arranged for sam to have an eye test, she also said to keep a close eye on sams gross and fine motor skills and his eyes…… The nurse came to give sam some medication to help him sleep for the eye test, no sooner had she given it to him and it was lights out!!!

Last night Sam had a good night’s sleep but woke up with a temp of 38′. I was debating to get him ready to go down for his p.t session. In had spoken to Jack about it before the time for physio so he went and had a word with Tom, Sam’s therapist. both Jack and Tom visited Sam in his room and because of the high temp it was decided Sam would have physio tomorrow instead. I thought 3p.m would never come….. The nurses came and put in the line for the stem cell at 2p.m. Sam was a little star while the nurses were placing the cannula, he didn’t cry at all which we were full sure he would instead he was laughing, i suppose he was listening to his Barney d.v.d so that helped alot. At 2.45p.m the nurse arrived to take us down to the I.V room for the stem cell, we had to wear plastic shoe covers over our shoes. The nurse hooked Sam up to the drip and all looked to be going smoothly until about 10 minutes in, when he started to cry uncontrollably. The nurse then stopped the fluids and injected an anti allergy medication into the cannula before attaching the stem cell. The anti allergy is just in-case of side effects from the stem cell. In total the duration of the transplant, if you’d call it that lasted 1 hour as there were other people having it done at the same time. Sam just couldn’t be pacified no matter what we done for him. He cried all the way back to our room and the second we stepped inside the door he was full of beans, he simply doesn’t want to be disturbed from his comfort zone. We put him lying down on the bed and he went to sleep. He slept from quarter past 4 untill 2a.m. I was getting a bit worried that he wasn’t waking up as he hadn’t anything to eat or drink since 1.30 that day. When he did wake up he was starving so i said i would try him with something other that weetabix. Sam had rice krispies for the first time and he wolfed them down, mind you they were soft but he was trying to chew he did get a little mixed up about the whole chewing thing. From that time he didn’t sleep for the rest of the night. All in all it was a pretty good day for us even though we didn’t leave the hospital.

This morning Dr. Chen came with Sam’s stem cell schedule for the coming week. He starts the long awaited stem cell tomorrow, the only thing in the way now is he’s had a high temperature all day so the Dr. say’s if the temp stays in the high 30′s the stem cell will have to be cancelled, as high temperatures don’t mix well with stem cell. So tomorrow if all goes to plan he will start his p.t at 8.15a.m followed by standing therapy, he has a break from 9.30-3.30p.m. I’m hoping he will stay awake for a little while. We didn’t go to the Holiday Inn after all today, we decided it would be best to keep Sam indoors just for fears he might pick up a cold or infection that would delay treatment. I really needed to get some milk and supplys for Sam so i took a taxi to downtown qingdao. Mary’s market stock alot of imported foor so i picked up enough to keep us going for a few day’s. And more expensive than the Lotte mart, but hey when i got my Kerrygold butter and Dubliner’d cheese i didn’t mind so much….They totaled 822rmb…! The driver’s here are a bit on the mad side, i’ve never seen anything like it before. They cut in and out in front of other vehicle’s like it’s a hot rod race, i honestly thought we were going to crash……
When i got back to the hospital Sam was still sleeping and still had a high temp. So the calpol was out full throttle!!!!:)
Today insted of ordering in i cooked us a dinner, it’s much quicker than waiting an hour for a take-away which you end up throwing the most of it in the bin anyway. I cooked potatoes, veg and pork, which was quite nice…..Thanks to Charlene for the suggestion