We had, as usual, a fairly quiet festive season with an early Christmas Eve visit to Sam's Granny and Great-Aunty Al and then a small, but enjoyable gathering for Christmas Day lunch with Aunty Cammy and Uncle D and the rest of us here in Smurfville. A few days before Christmas I was still a bit sceptical about whether Sam was actually going to avoid a hospital stay on Christmas Day as, as usual, it has taken him quite some time to get over the last viral infection and croup. Thankfully there was no hospital stay on the cards although Chris did land up doing most of the Christmas shopping on his own (not sure he saw this as a negative though as he does so love shopping - seriously!).
New Year's Eve was remarkably uneventful, with the exception of Sam eating about five mouthfuls of un-pureed "normal" macaroni and cheese with only a couple of gags, but still managing to swallow. Just before Sam's last surgery, he had started tolerating more textures so it was good to see, albeit tiny, a glimpse that perhaps it might be something we can start working towards again. Although, having said that, the fact that we are only 19 days away from Sam's next surgery - without him having found his way back to his "good place" yet from the previous one - I am not so sure that any kind of progress is something we should anticipate for now. Sam's sensory issues (or rather "fears" which seems much more accurate) seem to fluctuate erratically from day-to-day. For about 3 days last week I could not get him to sit in his high chair, the second I started moving towards the chair at mealtimes he would clench his little hands to his chest in his usual panic-stricken pose and that was about as far as we got. And then, just as suddenly and un-explained as this new fear appeared, so it vanished and we are back to doing mealtimes in the feeding chair. Bathing, getting into and out of the car and putting Sam into a crawling or sitting position on the floor remain still extremely challenging. I have never looked more forward to a surgery than the upcoming one to remove Sam's right testicle, especially after Dr B shared my concerns that a great deal of Sam's sensory issues could be related to pain or discomfort in the area where the testicle is tethered to a blood vessel. There are so many unanswered question riding on the outcome of this surgery so I can only pray that, despite the initial pain and trauma, we will be well on the way to recovery, from a sensory point of view.
Floating restlessly at the back of my mind is the completely irrational and whacky notion that there is something going on with Sam's spinal cord. I think that perhaps the fear originated from Sam's first sensory lapse in January 2011 taking place after his spinal cord surgery but not in any way eased by the fact that, where as Sam's urinary flow was strong and "healthy" for quite some time, I have seen too many weak, dribble-like wee's over the past couple of weeks. We also went through a period shortly before the TSC surgery where Sam seemed almost unable to straighten his legs completely and when we walked with him, would move his legs in a strange puppet-like motion...and although not quite as severe, Sam seems to be doing this again. Granted, he is not doing much walking at all lately so this could probably be more related to stiff, un-exercised muscles. Again, logic tells me there is no way the TSC is playing a part in Sam's issues right now...but what is logic anyway? Nothing more than a skill one acquires through endless rounds of chess-playing and galaxy-searching. Mmmm....no, I think I'm getting confused with my Sims now.
And from one countdown to another...there are only 70 days left until the Argus Cycle Tour! How scary is that? Okay, perhaps not for you...but for me it's horrifying. After we first registered to ride I looked up a Fittrack program which helps you train for the 110km race in just twelve weeks. I thought, "Cool! Still like 5 months to go, so I'll go back to the program in a couple of months time!" Well, I finally registered this morning to begin the twelve-week training program, TODAY...being ten weeks away from the race. So, even though the program is called the Survival Plan (which means you're main aim is purely to just complete the 110km's in 7 hours)...I am not too sure I'll be doing much surviving on that day. I think I will be pretty gobsmacked if I actually manage to complete the race. Whose completely absurd idea was it in the first place to attempt this? Oh ja, it was mine! (grins sheepishly)
Sometime in the upcoming week, Sam is going to be slowly and gently intoduced to some riding-therapy. I am so excited (okay...and a little scared, for me that is). An ex-colleague and friend started an awesome mission a while ago, together with a friend, to rehabilitate and take care of a number of horses, who had previously suffered abuse, neglect, etc. and now Haven of Hope shares the therapeutic benefit of horses with several special needs children. Something wonderful to look forward to, I am sure.
In closing, three very brief pics from Christmas Day (my pc is on the blink and it took 45 minutes to download just these 3 pics...3 out of the 20-something pics I originally planned on posting).
Sam has really taken to tearing up pieces of paper...magazine...photo's, so we thought that this would be his first "real" Christmas gift-opening experience, but he was more interested in what the girls were doing.
Probably Sam's most stunning gift - a portable dvd player for the car - from his Oupa Joe. For those that don't know, Sam is so not a car-travelling person and even short, ten minute trips to and from the school or shop usually results in crying and whinging so here's hoping this pressie is going to lighten the travelling load up a bit!
Oupa Joe's pressie for Megs was a beanbag chair, which she has been wanting forever, but which Sam and Brampies seem to have taken over (although Sam does seem far more comfy than his Bramps).
Every now and again, I take a quick peak at my previous journals just to kind of "compare" where I was emotionally and spiritually at that time, compared to the present. I think I've mentioned this before, but in case not - I had a "feeling" almost right from the beginning of my pregnancy that this baby was different...different to Meghan, to Luke...to every child we know. I confessed many times to God that I felt that I was being greedy by wanting a third, healthy and "normal" child but begged him nevertheless to look upon my pleas with favour. This morning I looked at what I had written on 1 January 2009 :
"In this world you will have trouble, but take heart! I have overcome the world!" John 16:33
So strange that I read this verse today. It was in a Karen Kingsbury book that I read yesterday."
It is so true...I think about what worries I have at the moment - the health and development of the baby growing in me, the health and wellbeing of my children. And yet the Lord has never forsaken me, so why do I worry so?
Then I watch programmes about small babies of just 9 months with cancer and braving chemotherapy and surgeries, Lord, and then I am aware of how extremely blessed I am and how you have always worked in our lives and I am humbled, Lord. I thank you...for every blessing and miracle I have in my life. I have to learn to pray as though I believe I will receive. I pray Lord, that you will bless our baby. That he/she will develop as perfectly as what Meghan and Luke did, with your Grace Lord and by Your hands."
And, as I've taken to doing, I close the journal, reprimanding myself for taking the silly thing out in the first place because all I walk away with is the fear that I did not pray as though I believed I would receive....or believe I will.