Synagis with Emla tomorrow

Tomorrow afternoon Wren is scheduled for his Synagis shot. I have a tube of prescription cream from our pediatrician which is to be used an hour before the shot so it does not hurt.

The information I received from the pharmacist was "apply 1 hour before the shot".

Ho hum.

I read the online instructions and it appears to be more complex. I am to apply ONLY to the spot that will be used for the injection. I should apply a dollup and then seal the area with an occlusive dressing so Wren does not mess with it. I should not allow the medication to be in contact with the skin for more than 4 hours - so effectively once the time for the shot comes I should wipe it off and clean the site so the cream is removed.

The shot is scheduled for 2.30pm-3.30pm

Wren naps from 12.30pm - 2.30pm

When can I apply the damn cream?

I guess I should try and get him to nap early, ask the nurse to confirm her arrival time around midday and then put the cream on based on the most current information. I also need to aquire a big bandaid that seals a bit better than our scooby doo ones.

Ugh. I wish it was a bit easier.

Dizzy Lizzy / Lazy Daizy

My mother is back from vacation and I shall have to resume my daily postings on the grandchildren. Mum has this super cheap "phone card" which is great but for the haunted house echo which has us speaking on top of each other or fading in and out from time to time. I need to write so she knows what I am talking about. Actually, I don't have time to post much now other than to say that all of us are well and have been enjoying some rare sunshine and walks.

This afternoon at 4.30pm Frost said "God, what time is it? Its so light?" When I told him the time he was stunned. "But its not dark?" he said. I explained that it had been weeks since we had much sun and he wasn't used to it staying light a bit longer. Wren looked out the window and said "go outside" which he did.

Seattle Children's Museum
This morning I took Wren to the Children's Museum. It was his first visit and he enjoyed the Imagination Art Studio and the car you can drive best. I have some lovely pictures of him painting. He also made a collage on an old LP. Strangely, the material that the children were given to cut collage from was National Geographic Magazines from the 1950s and 60s. One, from 1953 had an article about a trip down through Africa and included a story and pictures on Cape Town and Durban. I cut out some pictures from Muizenberg Beach in 1953 and stuck them on Wren's LP. I also tore out some sections to take home. There was another fascinating article in the 1966 edition. Apparently in March 1966 (shortly before I was born) Scientists in Seattle captured an Orca and kept it 'sea caged' at the wharf for tourists to watch. Bizarre. I am thinking of sending the article (which I stole from the toddlers snippety snip) to the Seattle Times (since the PI is closing) to do a follow-up story. Orcas are always in the local news!

Support Group for Shones Syndrome
I have started a google group for families with children who have Shones Syndrome. I have been learning a lot from email contact with a few of them and hope that others will join and inspire and inform with their experiences. Here is the group link. We have no posts yet but a few members.

http://groups.google.com/group/shones-support

More Surgery updates

• I have now obtained the package of Cath CD, Surgical opinions, clinic summaries and echo images needed for our referral to Dr Krabill. I hope she can make sense of them for us or at least cast her vote in the controversy.


• Dr Hanley's scheduler called and said that he had reviewed the two dates she suggested and felt that November 7th was a better fit for Wren's surgery. October 9th was a major case before his proposed surgery so it would not have been easy but November 13th was a less large one. I worry about November 7th because it is a Friday (less staffing over weekend) AND even worse, Dr Hanley goes on vacation for 5 days the following day. Is that even safe for Wren? I shall have to ask this at our phone consult next week. PLUS what if another critical case comes along? Do we get bumped for a week, get another surgeon? I do not like it, Sam I am.


• Bri called and said Dr Cohen can see us at 11.30am on the 16th


• Stanford called AGAIN to change our consult with Dr Hanley to 9.30am on the 18th. This is great because our babysitter will get here in time to watch Wren while we talk/listen.

I also read through Dr Hanley's recommendation in more detail and was interested to see his arguments for saving the valve. He says it is not very thickened, has normal motion and no regurgitation. He feels that it may be slightly obstructed by the LVOT obstructions close to it (above, in particular).

I like to hear these explanations. If it was a head-to-head save-the-valve surgery (and no Ross, looming) I would easily pick going to Stanford. However, it is not clear that he will be doing a Kono on the area - he mentioned "extensive myomectomy" - is this the same thing? Questions, questions.