An update

I think I mentioned in an earlier post that we are being followed by nine different clinics at the Children's Hospital - respiratory/diaphragm, cardiology, audiology, ophthalmology, surgery, plastics, hematology, genetics and head shape clinic. I can recite these like a truck stop waitress can recite the day's flavours of pie.

Last week, we had our first visit to Respiratory/Diaphragmatic Hernia Clinic. This was an all-day affair as I arrived early enough to get Samuel's blood work and chest x-ray done so that they would have the information in time for clinic. Samuel *screamed* when they took blood and he was pissed about being restrained for the x-ray too. This actually made me happy. Sam had dozens of x-rays and echocardiograms in hospital. And he had many, many hundreds of needles - 183 related to the blood clot treatment alone and at one point he was having blood taken hourly, then daily. Getting poked was so normal for him that he would only give this half-hearted, resigned fussy cry. I consider it awesome news that he is well enough to act like a normal baby who has lovely, well-meaning people doing obnoxious stuff to him.

Clinic itself was three hours - nurse, doctor, respiratory therapist, occupational therapist (for feeding), dietician, nurse and doctor again. The end result was two thumbs up for our Sam. His x-ray looked amazing with both lungs full size and he did so well with the oximetry that his oxygen was lowered from a half-litre to a quarter-litre. (Oximetry is where they hook him up to an oxygen saturation monitor and evaluate his sats. He satted 100% at his regular half-litre, so they checked him on less oxygen and found the place where his sats dropped. He continued satting 100% at a quarter-litre and so that is where he'll stay for now.)

Sam also showed off his eating skills by downing his entire six ounce bottle for the occupational therapist and dietician. He doesn't do this at every feed so he still needs the NG tube for top-ups. But it was not so long ago that a half-ounce by mouth was a huge event for Samuel. We are amazed by how quickly he is getting stronger and catching up. He is much more relaxed these days - no more furrowed brow and his hands are relaxing and stretching out of their gibbly-fingered position - and is happy and interactive.

"Them lab tech blood-taking people better watch out for me.
My mum taught me how to give the finger, you know."

Look what a respectful mother I am, covering him in wee towels before I take a photo of him
... in the bath ...to post on the internet. Heehee.

Sam is growing well. He is small and a bit behind developmentally for his six months of age. However, he is on the growth charts for both length and weight - hooray! There is no indication of any lasting developmental impact from Samuel's tough beginnings. His visual impairment is the only "forever" thing and that is unrelated to the diaphragmatic hernia and its treatment. He even has a head cold right now and seems not too much the worse for wear. Thankfully, I got it first so I knew it was not a big respiratory deal, otherwise there would have been much more anxiety to weather.

Things are a bit bananas here. Last week included the all-day Children's Hospital extravaganza on Tuesday, vaccinations for three out of four boys on Wednesday, birthday celebrations for Jacob on Thursday and Friday, and (finally) finishing my marking on the weekend. This in a house where someone needs something every second and the laundry alone could cause a woman to run screaming into the streets.

This week we had new windows put into our living room in the ongoing pursuit of a safer house for this baby's wee lungs. We had to replace the leaky windows before we could change out the 1971 avocado green carpets in there. There was a visit from Home Care and I managed an outing to a park and for lunch on my own with all four boys. And I was at the Children's Hospital again for head shape clinic (yes, Samuel is getting a funky clear-plastic helmet). Today I see my parents off to London, England on their dream trip that hopefully will not include them being attacked and killed by rioters. Apparently, there is no such thing as last-minute daughterly veto powers on parental vacations. I checked.

And yet, one of my best friends just accused me of being a Ned Flanders (from the Simpson's), one of those people who is just cheerfully happy with whatever gets tossed their way. I kind of don't think that's actually true. But... okily-dokily. I'll take it.

Brother Dan and I, we like each other a lot.

Sam has some things to say to his grandparents. I think they include, "Are you KIDDING ME?! You are going to London where they are rioting and looting and setting fires?! For the love of Maude!"

Yea, just don't go thinking it was easy getting a pic of them all together looking this sweet.