We've just crossed the 4 week mark and we are both really looking forward to coming home! Every family that was here when we arrived has gone, including Corey, Cheri and Justin who left yesterday and esp. left a void. Prior to, they posted a sign in the lobby inviting all to their giveaway sale - a whack of items they were leaving behind (I think to make room for the many handbags Cheri bought). I ended up with some snacks, stickers, toys for Thomas, plastic containers, hand cream for myself and Corey ceremoniously handed me the coveted electrical converter! I will do the same before I leave, but probably just leave a big bin outside my door because too many things will be left to the last minute! While I still interact with a number of parents - particularly those with needs closest to Thomas and who share his therapy time, my overall interest in socializing with others, esp. the steady stream of newcomers has weakened. I think I am psychologically checking out...
Thomas seemed to be going through a variety of physical changes in the last week - a lot more energetic and not napping at all, and not necessarily making up for it at bedtime! He has developed staying power he didn't have before. He also has these highs and lows - really stimulated, then hits a wall and becomes very unmanageable. I can tell that he needs more sleep, he has circles under his eyes, his balance is off and he is more clumsy towards the end of the day. Mealtimes are the worse, esp. if I don't hit them on target and his appetite is inconsistent; sometimes he refuses to eat after a couple of bites, other times he eats like he is starving. Attempting to engage Thomas in therapy towards the end of the day is proving to be almost impossible and he is draining me - by 3 o'clock, I feel the need to lie down and rest! Prior to, I thought he was coming down with something, his eyelids were red for several days and his nose started to water, I thought maybe a cold esp. when the doctor checked and noticed his tonsils were showing. Brooke, who arrived a week earlier, was being treated for tonsillitis and had been bed ridden with an antibiotic IV for days. I worried that Thomas had the same thing and we'd have to cancel his stem cell treatment the following day. The doctors checked again in the morning and assured me it was nothing severe and that we could carry on. Their only concern was to warn me about the cold season - to avoid all cold liquids/foods (like yogurt) and to avoid the wind. This in mid/high 70 degree weather! When we did proceed with treatment #5, Thomas ironically showed none of the earlier symptoms and that's when his energy level spiked. After his procedure, he stayed awake well beyond 9 o'clock and had an uncontrollable bout of the giggles - he should have been exhausted. According to some, SCT does often induce stimulation, another boy Kaden woke up at midnight last night and kept his grandmother up til 5:00 a.m.. The same thing happened with Brooke. Thankfully I haven't had to deal with that one...
Prior to Thomas' treatment, we did make use of the weekend off and venture out to the zoo with Brandon and his grandmothers. Brandon is another new 4 year old boy who suffers from spinal atrophy, he recently lost his ability to stand/walk, instead he crawls around on his knees. He and Thomas socialize a lot and he often makes his way into our room when we are not around and grabs the odd toy. The zoo was fun, lots of animals and other activities/rides for kids, the only challenge was getting around -not a single ramp, lots of stairs and the grounds were made of interlocking stones. I ended carrying Thomas too many times and set back my lower back. We still had lots of fun, Thomas now keen to go on rides so we are planning to go back. We also had not met up with the interactive monkey, which we must do. This time a local university student will join us, she volunteers to take parents/patients on outings to gain experience speaking english - I think an excellent trade off. If possible, we will also take in some other sightseeing - we are running out of time and I feel as tho we have not seen enough outside of these walls and the RT-Mart. I am also working on securing a caregiver next week, hopefully a nurse who wants to earn some extra money on her day off so I can get out and shop, there is great shopping here and I haven't bought a single item!
There are 3 fairly new young boys here with Optic Nerve Hypoplagia (ironically boys out-number girls by a huge ratio, maybe 10:1) ONH, as they refer to it is a neurological condition that causes blindness. Two of the three are beginning to regain some vision after just one stem cell treatment! One boy, who had partial blindness (i.e. he could see some images about a foot in front of him) could see his mother waving a finger in front of his eyes, the same test done hours prior, he failed. The other boy, 9 month old Jake from Calgary who is completely blind, was responding to his mother turning off the lights in his room, he was lying on the bed staring up, then started kicking when she turned them off. He is also beginning to squint for the first time. The response to patients with ONH is much quicker and they don't rely on therapy in any shape/form which is a huge plus. Needless to say, their parents are over the moon with excitement/anticipation and the excitement really spreads across the whole floor.
Despite having a tougher week with Thomas, I still see him continue to progress. The times I have been able to motivate him to do his therapy, I notice that he lifts his feet with greater ease and with less dependence. He is trying to climb my bed, and he managed to get into the portable fridge in our room and then into the water cooler storage (likely signs that he is going stir-crazy spending so much time there!). His vocabulary continues to increase - yesterday he was calling out with "excuse mes" (pronounced ek-use me) to grab people's attention today, he surprised me by using it in another term and placing his hand on his bum! He got a huge kick out that one, I think his sense of humour may have gone up a notch too since being here! Today I taught him a new Chinese word at the grocery store "xie-xie" (pronounced shae, shae) which means "thank you" and he was quick to retrieve it when departing the cab. I am getting the sense that he has a real grasp for learning right now - he's ripe, and I think he will have very good response to therapy and learning altogether. This was always my hope and my theory; to suspend the intensive therapy being considered this summer/fall until the stem cells were done, so that the outcome would yield a far greater return, and in the end come with greater ease to Thomas. Time will definitely tell...
Our last treatment is Monday and suffice to say, the excitement I felt coming here has now shifted into the other direction. The onus will soon be off stem cells and onto me, to move Thomas forward and maximize his results. And we'll begin this in the comfort of our home with all the conveniences and space - and with Adrienne, who I cannot wait to see!
