Archive for July, 2011

Medical Stuff

Friday, July 29th, 2011

Summer is slipping through my fingers as it always does in Canada. Winter is eternal and the short weeks of summer fly past before you’ve got a chance to breathe. I have not been blogging much of late because we’ve been out enjoying the ridiculously hot weather we’ve been having, and spending a lot of time at Bubby and Da’s cottage in Muskoka. (more…)

37 Years Ago Today…

Friday, July 22nd, 2011

Craig came into this world, approximately 15, 562 kilometers from our current location. Happy Birthday Craig! Happy Birthday Daddy! We love you and can’t wait to help you blow out the candles on your birthday cake.

With all the love in our hearts,

Erica and Beanie

xoxo

 

 

 

6 Months

Monday, July 18th, 2011

Just flying by to let you all know that our appointment with neurosurgery today went well. Dr. Dirks said the scan looked “great.” There are currently no areas of concern so we watch, wait and pray for no infections in the shunt. Relieved, happy, and ready to enjoy my sister’s wedding and the rest of summer! We will see neurosurgery again in 6 months time. It seems an eternity.

Ah, life is sweet.

MRI Result: All Clear

Tuesday, July 12th, 2011

We received word this afternoon that Gavin’s MRI scan from today was All Clear from a tumour perspective! No matter how many times we go through this, it never ceases to evoke anxiety. “Scanxiety” as they call it.

We are still waiting to hear from neurosurgery whether his shunt is draining too much or not, but at least that is a mechanical issue that can be corrected if necessary.

Thank you for all your thoughts over the last few days – the positive energy helps immeasurably.

MRI Again

Tuesday, July 12th, 2011

We were able to fit into the MRI schedule today and will be taking Bean there without a sip of water or food for over 12 hours, but it is as it must be.

He will be in the machine at 12:30 – please send us thoughts, prayers, energy and love. We need all the help we can get!

Hair, Long Beautiful Hair!

Saturday, July 9th, 2011

Beanie and I made a little excursion yesterday morning to a local kids’ salon called Melonhead. Yes, it was time to snip those long, lustrous locks.

Gavin has had a difficult time with hair in his short life. He was born with very little of it, and all of that first crop fell out when he was about six weeks old. He was finally starting to sprout some more, when the cradle cap he’d been battling turned into something more like eczema and killed off the second batch, leaving him bald as a new-born at the age of 10 months. (more…)

The MRI That Wasn’t

Friday, July 8th, 2011

Due to an unfortunate oversight, Gav’s scheduled MRI did not go ahead today.

We got to the hospital with plenty of time to spare for our 3:15 appointment and Gavin eventually fell asleep ahead of time after three or four total meltdowns, caused, I’m sure, by extreme hunger.

There have been a lot of questions from anesthesia as to how the thickener that Gav uses in his drinks acts in the digestive tract. Some anesthesiologists at the hospital have allowed procedures although he had had thickened water, others are not comfortable with it. I was told that Gavin should have nothing to eat after midnight last night and water up to three hours before the procedure. I questioned, myself, whether I should let him drink water, but was more concerned about keeping him completely dehydrated all day and so he had his last sip of water about 4 hours prior. That did not fit into the six hour window that the process mandates, so we were unable to go ahead.

Needless to say, after getting completely worked up mentally for a scan and wrangling a starving toddler for most of the day, none of this went down well with me and I was teary and surly with the staff.

We were given the option to wait around and see if an anesthesiologist became free in the evening after coming from the OR, but it was a complete unknown and I could not in good conscience keep Gavin NPO for almost 24 hours! So I pulled the plug and stormed out of the place. I don’t really blame anyone but myself, but am just so frustrated that we are now back in a holding pattern of waiting to get an appointment on a cancellation.

I imagine, of course, that they will ring up on my mother’s 60th birthday next week and ask us to come in then.

Surprise MRI

Thursday, July 7th, 2011

I got the call this afternoon to come to MRI tomorrow. Big, huge sigh. Dr. Dirks had requested one “sometime within the next few weeks” and we got in on a cancellation. So, we pretty much have to go, no matter how wrenching it is to do so. Our neurosurgeon will be looking for signs that Gavin’s current shunt is pumping too much CSF away from his brain. We are praying, knocking on wood and petitioning saints that this shunt is doing the right thing. Please join me tomorrow in focusing on a clear scan, tumour-free, with no sign that the shunt is malfunctioning. I need a huge bubble of protective, loving energy floating around Gavin’s little noggin.

The scan will be clear, because it must.

The Sweet and the Sour

Thursday, July 7th, 2011

When Bean was a newborn, I joined a group of mamas who met once a week at the house of a wise woman named Sasha. Sasha is a mother, doula, yoga instructor and local guru to newly hatched mummies and their babes. Each week, we were encouraged to sit in a circle and talk, and share one thing from the week that was sweet, and one thing that was sour. Inevitably, there were tears. We talked about birth stories, sleeplessness, breastfeeding, crying, and arguments with partners. In a way that only new mums can do, we discussed at length the minutiae of baby care. Nail clipping, cradle cap, diaper changes, and first foods all got a thorough going-over. Of course, there were some weeks that felt beyond challenging, but it was always helpful to remember that even in the worst times there is always a sweet moment or two. I continue to try to learn the value of this lesson every day.

This past week has felt both sweet and sour to me.

First, the sour. Being at home every day with a toddler provides its fair share of exasperating moments. I have been finding it hard of late to keep my temper with Gavin and not over-react when he insists on taking his shoes off every three seconds, or turning on the garden hose and drenching me and the patio, or refusing to eat a meal that he has just helped me make and insisted that he would eat beforehand. Preschoolers are savvy negotiators, and Gavin needs to have a five-minute conversation about everything before he will agree to do it.

Getting ready to go out in our house is a glacial agony that takes literally hours. This is partly due to an issue that I’ve mentally labelled, “Upstairs, Downstairs.” Because of Bean’s tendency to get into trouble the nanosecond my back is turned, I cannot leave him alone downstairs while I go up to get dressed, or vice versa. When I want to go up our long staircase, I have to spend ten minutes or so chivvying him towards the bottom of the stairs, (as he usually wants to be in the play area) and then encourage him on his slow progression up the mountain, as he stops on each step to tell me a story or sing me a song. Once we are finally at the top, I spend many long minutes chasing him around to get him and then myself dressed, and then begin the process of convincing him that going downstairs is now a good idea. When we finally reach the main floor again, woe to me if I’ve forgotten something upstairs that I want to run up and quickly get, because NO, Mama, I have to go with you!! usually results. On many occasions, leaving him downstairs has produced a long and tempestuous crying jag (on his part) that leaves both of us completely frazzled. I’ve learned now to distract him with some task before sneaking away to find whatever it is I need. I try not to make appointments to be anywhere before ten in the morning.

I have been debating for the last few months as to whether I should put Gavin in a preschool program this September. I had hoped to take action on this sooner, but the ups and downs of the past six weeks had left me undecided. Finally, last week, I decided that I need to try to move forward on this despite recent circumstances. There is a local program that is only two mornings a week, which would be ideal, but unfortunately, further investigation revealed that there is no space available at this school. Sigh. I am now looking into other programs.

Although the events of last winter are now quite a way in the past, I have been realizing lately how deeply scarring the whole experience was. Many things seem to have come full circle in the past month, as we passed our first D-Day anniversary. Looking back on the year, I cannot help but feel sadness for what was lost for Gavin, and for me, and for Craig. It’s very hard to think of what Beanie should have been doing those many months that he was trapped in isolation or tethered to an oxygen tank. And yet, in spite of what he has been through, he shines on.

I admit that things have been difficult of late, but I still want and need to express my gratitude for how very sweet many of our days have been. We spent the long Canada Day weekend at the cottage with my parents and Auntie Loz and Uncle Adam. We were gifted with perfect weather, and Bean was almost completely angelic all weekend. Craig and I took Gav strawberry picking at a local farm and out for lunch in town. We took the boat out in the late afternoon and my heart flip-flopped to see Gavin and his Auntie flying like birds in the bow. Craig tried to get Gavin swimming in the chilly lake, with hilarious results. We spent a lot of time at a nearby playground/beach, digging a hole in the sand and going down the slide countless times. It’s these small and beautiful pleasures that Gav was denied. No more. Now for a summer of sweet moments.