I’m FINALLY going to let you guys know a bit more about what happened during Little Red’s spinal specialist appointment. As you know, we saw Dr G down in Sydney regarding her congenital scoliosis and butterfly and hemivertebrae. Apologies for only getting this information out to you after a whole week. Hubby was working away from home last week so it was pretty full on and I was simply too tired to blog. I think I also needed a bit of time to just process the day. I’ve been receiving private messages asking how everything went so fully appreciate how some of you have been worried or curious. I promise I did not mean to leave you hanging!

I’m just going to get right into it…




CONGENITAL SCOLIOSIS

Dr G initially spoke to us about congenital scoliosis (born with) and gave us some statistics:

  • 75% of congenital cases worsen;
  • 50% of those cases worsen slowly, the other 50% worsen quickly.

The reason for the fast and slow differences is simply down to growth spurts. Apparently we do our major growing between 0-3 years old and as teenagers. The reason that this quick growth could affect LR’s spinal curvature is down to how her hemivertebrae are connected, or not connected with their neighbours. He also mentioned how the various single vertebrae she has could actually even out, therefore leaving her spine kinda’ symmetrical.

JUMBLED MESS

Dr G remarked how LR’s spine is a “jumbled mess”. Awesome phrase BTW.  But that she was actually looking pretty good in terms of posture and movement. He advised us that he was hesitant to do surgery right this minute due to the difficulty and complexity of tiny people’s still-forming bones. When I asked if he would wait until she finished growing his reply was absolutely not. He was very clear in the fact that he wanted to keep seeing us and monitor the situation so that he could act as soon as it changes.

We go back to see him again in May and where we will also do an X-Ray just before his appointment. That way Dr G has more accuracy when deciding what happens next. It could be that he says to return in four-six months, or it could be that he says surgery is required. Surgery could be a series of small fixes over time instead of one large operation too, which obviously made us feel slightly less vomity.

THE OUTCOME OF LITTLE RED'S 1ST SPINAL SPECIALIST APPOINTMENT

T’WAS A BIG DAY

It was a HUGE day. I felt it mentally, emotionally and physically. BUT overall we were really happy with the outcome. I have to say that Dr G was fabulous with LR and made her feel really comfortable. We also liked his no-nonsense approach. Getting the first appointment out of the way has relieved a lot of fear.

I’m also yet to update you on our recent trip to the ENT (Ear Nose and Throat specialist). Long story short, Baby Bear will probably need grommets early next year so knowing that any spinal surgery would be after the middle of the year gives us some much needed breathing room.

Hope everyone has had a great weekend and if my laptop doesn’t cark-it I’ll see you soon!

Love,
K x

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