We will be getting an early start tomorrow to be at Sick Kids at 8:00, in preparation for Gav’s 12:00 shunt revision surgery. We are still going forward on the premise that all will be well. What we would like to see out of this surgery is that there is, in fact, something wrong with the shunt which can be easily corrected, and this in turn will ease the pressure on the open area of Bean’s little noggin.  Of course, there are risks, as with any surgery, and given that statistically we reside in the “less than 1% of the population” zone, I am always fearful that the potential risks will become realities.

However, it is best not to give too much attention to those thoughts.

With that in mind, allow me to tell you about some good stuff that’s been going on. We were officially discharged from Chest on Friday. The lovely Dr. Dell feels that since Gavin has not had any issues since going off O2 more than three months ago, it is unlikely that he will have a relapse of the issues that plagued him in December. I believe the word she used to describe Gavin’s recovery was “remarkable.” Knowing now, as I do, that very, very few people have ever recovered from what Gavin had, I feel remarkably blessed. Gavin may have inherited my mutant gene but he got Daddy’s strong lungs. Those strong little lungs are doing well, and (knock on wood) haven’t yet been tested by any coughs or sickness.

Since we said adios to the central line a few weeks back, Gavin has been swimming on a couple of occasions. When I say “swimming” of course I mean standing in the shallow end of a tot pool, but it’s a start! Last week I took him to a nearby indoor pool to splash around with our friends Karen and Keira. Gavin has a pretty low threshold for splashing and being wet in general, it seems. (Wonder why?) As soon as we were in the pool, Gavin said, Mama, can you take my shorts off? They’re all wet! I assured him that that is kind of the point. Bean has also been discovering the joy of showers, as we make slow and deliberate moves to get  him used to water again. I’ve signed him up for twice weekly swim lessons in July, which will hopefully help get him in the swim of things. (Oh, I can’t help myself.)

A couple of weeks ago, both Craig and I became quite concerned about Bean’s speech. Suddenly, one weekend, he began to stutter quite badly. The news of Gav’s skull issues followed closely upon this and we couldn’t help but feel it was related. Dr. Dirks didn’t think the two could be, as the area of the brain that is being pinched is not really responsible for speech and language. (Or understood to be.) Naturally, both Daddy and I were troubled, and felt so sorry for our little man as he fought to get his words out. We were told by a few speech pathologists and friends that it could just be a developmental blip, which commonly occurs in pre-schoolers. Thankfully, it seems that it was just a moment in time and Gavin is back to being the incessant chatterbox that he was before. There are times that he struggles to find his words, from excitement or agitation, but that seems to be pretty normal for the age too.

As Bean has gained strength and become more agile, both Craig and I had relaxed the vigilant hold that we had on him for so many months, as we wanted him to feel independent and free to explore as he wanted. Unfortunately, that freedom has now been restricted again as I have had several minor heart attacks from the antics he gets up to. He is much stronger than before, but certainly does not have the balance or finesse of movement that his peers do. When he runs or attempts certain moves, he looks slightly jerky or clumsy, but I’m not sure if that would be noticeable to an outsider. Our many weeks in gymnastics are beginning to pay off, and as Gavin has become stronger he is able to do things he was not able to before, like climbing into his stroller and car-seat  by himself, or hanging from a bar, or taking shallow steps one foot at a time. Despite these advances, he is still considered delayed in gross motor skills, as he cannot jump, hop or skip. We will give him the summer to play outside and work on developing these skills, and then evaluate in September. If he is still struggling, we will enroll him in a private physiotherapy program, as we are now only being seen at Bloorview every six weeks. For the moment, I am constantly turning around to his, Look what I’m doing! to find him perched atop a chair with one leg in the air. Ta-da!

Other great strides include: eating well, drinking his 1 litre of fluids, (thickened no less) becoming completely toilet-trained, learning to dress himself, riding a tricycle, and learning the sounds associated with letters. He loves reading and current faves are: Mike Mulligan and His Steam Shovel, Curious George and Berenstain Bears. He rarely asks to watch TV and mostly wants to play outside in his new turtle sandbox, or “do gardening work.” (Dig random holes) Last week we took him for his first ride this year in the Chariot trailer and he kept saying, I’m so excited! Can I get in?!

He is funny, opinionated and stubborn. He is a good little monkey, and always very curious.

7 responses to “Revision”

  1. Susannah

    Really it is not possible for me to feel any happier right now after reading your update. Thank you for the all the great news. Kiss that little Curious Monkey for me. Would you two be up for a play date soon? Loads and loads of love, Susannah.

  2. Auntie Melanie

    I laughed out loud (at work) when Gavin wanted his shorts off because they were wet! tee-hee! – He has made incredible strides in all things! – I’m looking forward to reading the blog tomorrow after a successful revision!!!

    I love you guys – positivity coming your wayyyyyyy

  3. Aunt Karen

    I’m thrilled to read about Gavin as well. He IS funny, and thanks for sharing all his goings-on with us. I’m feeling positive that tomorrow will be just fine, although I can share your reluctance about “one more surgery”.


  4. Amy Zammit

    Hi Erica, you guys are doing an amazing job of helping Gavin catch up on those months of treatment when he had little chance to follow normal development. Just to give you a benchmark on our little man who is close to Gavin’s age by several weeks: Tom doesn’t skip or hop but can jump- usually from the highest object in the room! He doesn’t talk that clearly but its improving. He can sing the alphabet song but has no idea about colours despite my regular colour questions. He has no interest in toilet training despite seeing his big sister go all the time and 90% of the time will ‘fib’ that he hasn’t done a poo when our noses clearly tell us differently. He can’t pedal his tricycle- just pushes along with his feet. Also Phoebe stuttered at almost the same age for about 2 months- we almost took her to see someone but she grew out of it. A doctor said its really normal- essentially their brain is thinking faster than their tongues can get it out! Good luck on the revision surgery. We hope you all cruise through it and can get back to the fun stuff. Love Amy xo

  5. Mairi

    With you in prayer.

  6. Terri Szego

    Hi Erica,
    I hope all goes well today. A quick suggestion on the balance/jumping/etc. It seems crazy but we bought a bouncy castle for Rhys’ 3rd bday party – Toys r us sells them – and we have had it out almost every night in the backyard. The 2 boys absolutely love it and their balance and jumping has gotten so much better in the last 2 weeks. An added bonus is that they are sleeping better than ever! I’ve also heard from friends that there are small trampolines that have a handlebar that has helped other kids develop better balance/agility.

  7. Aunt Bev

    Thanks for keeping us up-to-date on Gavin’s amazing progress. He is amazing! We Hope all goes well today. We send our love & prayers!

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