perception


I often am amazed at how much happens in one week - and the range of emotions those days carry. Last week at this time, we were gearing up for a busy week of traveling and appointments. Tonight, Ralph and I are mending from what seems to be a mild stomach flu or a reaction to all the busyness. Either way, a diet of soda crackers and ginger ale gets old fast. Both Rachel and Janneke are also mending from a cold/possible influenza bug. The key word: mending. Thankfully, Em and Soph are as hyper and fun as ever.

The week started with therapy and school time for Rachel and Janneke. Monday afternoon found Ralph and I with the two girls at Mac, getting reacquainted with our ENT (ear/nose/throat) specialist. This visit was helpful to talk through the sleep apnea for both girls, the inability to suck and swallow, and the drooling. We were thankful to take both girls although Rachel developed a cold that same day.

What was quite interesting was Rachel's reaction to be examined. In the past, she would not flinch when the medical folks would poke and prod her - even with numerous needles. Lately, she has been more interactive with us and at school. And her awareness of her circumstance was evident on Monday as she actually cried when they tried to examine her sinuses and throat. She held her hands to her mouth and cried. This was heartbreaking and celebratory all at once. I think she was remembering her experience with the intubation and PCCU stay back in June. My little girl was doing her best to say "BACK OFF" - hurray!

Janneke in her physio session - kneeling is a big deal.


Janneke and Dad relaxing after a long day.


By Tuesday night, Janneke was crying and obviously very uncomfortable for most of the night. I wasn't crazy about leaving Janneke, but I had to take Rachel to Kitchener to visit an eye specialist Wednesday afternoon. Rachel suggested we have lunch with Aunt Michelle. So, we came early to the appointment and enjoyed lunch together in the lobby. Lots of coffee and prayer got us home.

Wednesday night was not much better for Janneke- or for Ralph and I with sleep. I was very thankful to have Carolyn come along to our SickKids visit on Thursday. She drove while I alternated between napping and talking her ear off. Very patient friend indeed.

Waiting our turn in the clinic in TO. Rachel kept her arm on Carolyn's while she read to Rachel. This is a new skill for Rachel, and we all love her touch.


Our appointment at SickKids was also to see an eye specialist. Again, Rachel showed her defensive side, particularly when the bloke (and he's from the UK, so I can say that) put a patch on her eye. Mum, take the bloody thing off!


The folks at the ocular genetics clinic (eye guys) didn't have much to add to what we already knew. There does not appear to be anything wrong with the function of the girls' eyes. Instead it's their perception and ability to coordinate their skill of seeing that is not quite understood. It seems that both girls have developed coping skills to see what they can, and until something appears radically wrong with their eyes, we will simply continue with assessment in Kitchener.

After the appointment, Rachel and Janneke took some time to watch the fountain in the Atrium while Carolyn and I had lunch.


I took a quick picture of Janneke because, with the angle, I could see her old NICU room window just above her head. Speaking of perception, I am so thankful our perceptive of things has changed since those long ago days filled with anxiety and tears.


Now we are home again. Both babes are mending from their colds. Janneke's cold seemed to lessen after switching her from formula to Pedialyte. She is looking and sleeping better.



Special thanks to our friend Jeannetta for working on the girls' leg warmers! These are much easier to wear when you sit and don't run in the snow. Janneke's pair was finished first.



And today, I was again thankful for Em and Soph's big sister love. While both Ralph and I tried to ward off the nausea, the girls created a Snoezelen room in Em's bedroom. Bernice is trying to put something together for Ella as well and had given me these fun lights. Em and Soph took those lights, some extra Christmas tree lights, two flashlights and a small disco ball - voila! Instant light therapy fun.



As an aside, we discovered another bit of Snoezelen therapy in the kitchen. Whenever we get a drink of water from our water cooler, the air bubbles in the jug make a noise loud enough to catch Janneke's attention. We stuck a flashlight on top of the jug Saturday night and had a good laugh watching Janneke's fixation on the bubbles. She knew it so well that whenever someone reached over to fill their glass, she looked at the jug. The Culligan Man should consider a new side business.


Moving into this week, we have school therapy for Rachel and OT/SLP therapy for Janneke. Rachel has another kidney scan on Tuesday. Not sure what to expect with that, so we are not worried. Certainly, after drinking all that water this weekend, I know my kidneys are working.

Hope the week goes well for you.
Peace.
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