During our 3rd week, the comings/goings continued to ramp up - we said good bye to Keanu, the precious boy from South Africa (his mother and boyfriend hosted a grand dinner the night before), our adult friends from Northern Ireland (Alan who has ALS), Robert from New Zealand (spinal injury caused by motor cross accident) John from Florida (Ataxia) and the little blind girl from China who shared Thomas' first stem cell treatment. There seemed to be more "comings" all children, including a 9 month old boy from Calgary, all trickling in over a 3 day period. Their parents, siblings, grandparents increased the numbers dramatically and the common reception room quickly took shape of a Romper Room setting. There is one family of 6 from Kansas City (young parents in their 20s with 3 boys and the grandmother), their eldest son, age 6 is blind, has autism and another rare disorder that affects his hormone level and thyroid. When asked why so much family came, the grandmother explained "I suggested staying behind with the 2 boys but was told when and if Kaden regains his vision, the two people he wants to see first are his younger brothers". You can't really argue with that! There is another little boy with CP, 18 month old Luke who travelled with his dad from Missouri and when I passed along Thomas' website, he told me that his wife already had bookmarked it.
Last week, China also celebrated their National holiday - it lasted an entire week and thankfully not too many services were affected on our floor. The most obvious ones tho were two maintenance items - the hot water was turned off for 5 days and the central air conditioning was turned off for the season (although still warranted, temp hovering around 80 degrees). I had to boil water a # of times each day and trek it to my room which got tiring. Thomas continues to need a sponge bath, the wound on his foot still recovering and needing to stay dry. After nearly 2 weeks, the docs finally told us it was healing and that the dressing would be reduced to once every day or two. Thomas still needs to "be careful" (one of his favourite expressions) and we make sure a sock is on at all times to protect the wound from too much friction from the floor.
Thomas completed 2 more spinal stem cell treatments, each 5 days apart. His reaction is thankfully less intense and the side effects seem minor - only once did he show a slight elevated fever and the pain in his back appears very mild. He is always drained tho and it takes a couple of days to restore his energy. The 6 hours of laying flat on his back is becoming less labour intensive, I immediately put on the TV and try to pay as little attention to him, he seems to keep to himself for the most part, then at the 2 hour mark begins to get bored and his hunger/thirst becomes more overpowering. At that point, he is usually allowed a small drink and we begin the more difficult 2 hour stretch.
To add a little more fun to the day, we did some toy shopping at the RT Mart and Thomas being the sports enthusiast he is, selected a lightweight plastic baseball bat, a pair or golf clubs, a basket ball net, a fishing rod and a helium fish balloon. The basket ball net and fishing rod did not last too long - about 2 mins in total (while the toys are inexpensive, the quality is poor), Thomas can get a little rough at times. That being said, the poor fish took a beating with the baseball bat and was quickly deflated before his time. We also ventured out and discovered a new part of town within walking distance with a coffee shop that sells cappuccinos and muffins (something Thomas has been craving since our arrival!)
On Monday morning we received news from Dr. Lisa that Thomas was booked to receive his MRI at the Qingdao City Hospital for 11 a.m. that day. After being shut down for a week during the holidays, it amazed me that they would have an opening so immediately -we would have to wait at least 6 months in Canada, probably closer to a year for an MRI. A driver picked Lisa, Thomas and I up at 10 and shortly after arriving at the hospital, Thomas took an oral sedative which didn't yield the result it was supposed to. After 30 minutes, I suggested he lay down in a bed with his blanket, rather than sit in his stroller or be held. Once he was settled in a dark room, he eventually fell asleep, however would wake up each time I tried to carry him down the hall to the diagnostic room. By noon, the driver was getting nervous, he had a stem cell pickup at the airport and there was a line up of treatments beginning at 2 p.m. On a whim, the technician and I decided to try the MRI with Thomas awake - it seemed like a huge shot in the dark, but we really had no other choice other than rebook and go a stronger sedative route and I hated to give up without one final try. Thomas would need to lie completely still for 20 mins in an enclosed cylinder - thankfully he could still see me at his legs. I think the effects of the sedative took away a lot of energy and his blanket gave him that added comfort... The little guy ended up pulling through, he was amazing and I was in complete awe! And aside from trying to play with the imaging ring over his head (I had to take his hand and hold it) he cooperated throughout and after 20 mins, we all quickly packed up and headed back, making our way first to the airport...
Two days later, the docs met with me to review Thomas' film which they displayed on the lighted screen. Once again, the MRI showed atrophy to his cerebellum, which means it is small in size and contained an enlarged ventricle space (i.e. white matter, that serves no purpose) to make up the difference. They labelled it "moderate" in size and by comparison it was slightly larger than the previous MRI completed at 16 months, which they attributed to overall growth. During the review, I asked my usual question, what might have caused this, and their response was "no exact reason" but a textbook answer might be something hereditary in the genes, or caused by an infection during my pregnancy. We didn't spend too much time on that, doctors don't like to hypothetically guess about things they can't really answer so we quickly moved into the "now" and I asked what could be done to restore the damage, if anything. They of course agreed that we were on the right track with stem cells, that it could very well help restore function, may not necessarily increase the size of the cerebellum, but make it more effective. They strongly suggested not to increase the amount of treatments (which I was open to if necessary) but to really assess the effects and if favourable, come back and repeat.
In my assessment so far, I am noticing changes occurring with Thomas, he is definitely speaking more clearly and in greater quantity. He is saying things like "super duper pee" after being on the potty, asking me to "go get drink" "turn it off" and I notice his retrieval of words is much quicker. He is also more rational with his response, "no, my socks", and I catch him reading more and picking up details in books particularly his "I Spy" book, pointing out small details and describing them - "dad on bike, with helmet", "bunny rabbit" etc. He is also able to turn pages with better precision and hold his attention longer. Yesterday I placed him in a sitting position on the floor and rather than fall back, he caught himself with his two hands and held himself mid-way, he continues to navigate himself off the potty without face planting, something he couldn't seem to grasp before. During meal times, he is managing his food better, I ask him to gently hold a muffin and he does so without the muffin crumbling in his hand. He can put a fork to his mouth more slowly and he held a large cookie and took bites from it without putting it down. I am extremely pleased to see a reduction in spitting food out of his mouth and throwing! I can summarize Thomas' progress by a common thread, he has increased his self-control and for child who lacks this skill in every possible area, this is a fundamental progression that will hopefully grow with the appropriate and continuous input. His therapy is currently being mapped out for when we return home, this and his daily routine will be critical to maximizing the effects of his stem cell therapy. I believe his progress is only beginning to shed light...
In addition to these very positive signs, Thomas continues his superstar status - the name staff have given him here and he continues to garner excessive attention, which he doesn't seem to mind. He and I are spending both quantity and quality time together, and while he keeps me very consumed with his care, we also enjoy fun times and laughs - Thomas can be very entertaining and I am seeing a lot more of this side now that we are confined to such close quarters (all day). This weekend, we are planning a trip downtown to shop and take in some sightseeing. There is a monkey at the area zoo I am dying for Thomas to meet. He continues to like being "in China" and sharing a room with mom and often tells me how "nice" I am, which I interpret all as good signs. With another 2 weeks and 2 treatments to go, we are now beginning to see the light at the end of the tunnel and becoming excited and nervous about moving into the next phase of treatment, the post stem cell therapy...
