Nate's bouncer almost deserves its very own post - $45 of pure magic! He LOVES to kick against the couch and bounce himself, and loves it even MORE if you bounce with him - many an hour is spent in this way! We figure that it has to be good for his muscle tone too, so we encourage him even more :-)
So to kick off this week's post, check out the videos below of him in action.....the second one is with his sister Mia - his next favourite thing is playing with her hair!
But it's not all fun and games in 'Nate World' unfortunately! Next week we have yet another onslaught of Starship appointments....
- First up is Ear, Nose & Throat (ENT). Some of you may remember that about 6 weeks ago, Nate's exploratory surgery was cancelled as the view was it was better to wait until he was a little older/bigger, and to see what effect the caffeine had on his apnea, seeing as the view was that it was central-system related. Well this week we are back to see his specialist to find out the next steps.....and given that we still have some snoring, reflux, and on occasion heavy breathing, they may well decide that soon is the time.
- Next up is Cardiology which is the long-awaited check on his heart. Not looking forward to that one, as the booking confirmation suggests a 2-3 hour appointment - never good with a baby! But I've been worrying about his heart, as heart issues are not uncommon with T9M, so it will be good to get that thoroughly checked. I guess those are the sorts of checks that tend to happen with babies diagnosed while still in NICU (which would be most babies), and which of course we never had. So it's all a bit unknown.
- And finally another ultrasound on the kidney and renal tract. A follow up to prior, and possibly a little more in scope, and I guess 'no change' would be good news on that one. Fingers crossed.
So.....big week coming! I'm sure Robin and I (and Nate!) will all be pleased when these Starship appointments settle down. Having said that, I'm constantly struck by how fortunate we have been to date. And yet it still feels odd even writing that, when I consider all we do have to deal with!!!
However what we have experienced to date, pales in comparison to many others we've heard about. Since we were diagnosed, I think there have been at least another five babies who have joined the T9M Family Facebook group, with the current membership now sitting at 132 worldwide. And some of the T9M'ers and their families are finding it pretty tough going right now...
- Russia's only T9M baby has just been diagnosed and joined our group - unfortunately suffering a heart attack over the weekend due to her T9M-related heart condition, and so is currently in ICU. Hearing from that Russian family around what little support exists there - both medically and developmentally - and you realise how views, attitudes, and perceptions of Trisomy kids, have a LONG way to go in parts of the world. That family was basically told to leave their child at the hospital. And finding a cardiologist there who will treat their baby, is proving nigh on impossible. Just tragic. Fingers crossed they find help, and that little Glasha pulls through ok.
- Another four year old in California had to have brain shunts put in place over the weekend to reduce fluid and pressure, and then suffered stroke-like symptoms, so is now also in ICU. Her mum reports that after a few shaky days, Annabeth looks to be turning the corner now.
- Another very wee one in the States just joined us - the baby is only about 7weeks old, on ventilation with a trach coming, has significant organ challenges, and is still in NICU. Her parents are bravely trying to navigate all that now. Don't envy that for a moment.
- Even Nate's T9M sister (one day older Felicity) in the United States is in hospital tonight with croup and severe dehydration. Felicity has also been found to be a silent aspirator and is now on thickened fluids and may need a mic key button in time.
All in all, some scary stuff out there. But this wouldn't be an account of a T9M journey if i didn't acknowledge that. Hard to read about sometimes (in fact often), but at the same time worthwhile, just to be able to understand some of the potential risks, what to watch for, as well as well-needed advice at times. It also reaffirms to me the value of keeping Nate away from bugs, and I'm pleased that we've been so rigid about that with visitors. The risk of a cold or flu quickly becoming pneumonia, is too great, especially if there is silent aspiration going on. It's an approach I'm going to keep up, until he is safely through his first couple of winters. (So sorry if that means I come across as rude to people who want to visit!)
Anyway moving on to some happier stuff....:-)
- Grandaddy's plinth is now complete! Physio still isn't Nate's preferred past-time (by a long way!), but it's a WHOLE lot more enjoyable for him on the plinth than it was! Plus 'raspberries' have become the sound of the moment, and Nate is delighting in making them and having them made back to him :-)
- Nate's also been spending lots more time in his Bumbo seat practising his sitting, feeding himself his rusks, and holding his own sipper cup :-). He continues to eat really well, and we are sure his growth will reflect that at his 32.5 week (or 26.5 week adjusted) weigh-in this Wednesday. And we have just bought him a high chair, so more fun and games to come on the feeding front I'm sure!
- Nate's quilt has also finally turned up! Robin's Aunt Sally made a quilt for Nate and sent it sometime back, and we thought it must have got lost with us moving house. BUT surprise surprise it turned up the other day....a gorgeous dinosaur-themed piece, with a really lovely connection to Robin's late Mum incorporated within it. Just beautiful. And interestingly enough - and without even knowing - Sally picked the same theme as Nate's name card in NICU :-)
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| Nate's incubator name badge |
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| Quilt from Great Aunt Sally |
- Work is also going well for both of us, and I'm particularly enjoying being back at work. It has its manic moments of juggle (Nate appointments the main reason), but we can both see how things can get more settled in time....
- Speaking of which, we should be back in our own home within about four weeks time! Exciting and a huge relief at the same time. Looking forward to not having to camp in a rental, or having to spend weekends sorting house stuff like paying reno bills, choosing carpet, curtains, wood, window fittings, taps, door handles, doors, and the list goes on, and on. It's been a great experience so far, and just what we imagined, but it will be nice to see it all done and dusted too :-)
Our final couple of videos for today are with Daddy (exploring his face, and having a laugh!), with Granny and Grandaddy (having a chat!) and with me (having a chat and blowing raspberries!)......enjoy :-)
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