November came by quickly. Time was moving on, and so was our appointment train. Choo choo. She was five months old.
Her follow up echo was first up, and a lovely balanced heart is what we saw! Fabulous. She may have a hole and a tightened valve against her but in typical Dixie style, she worked it. The two ‘baddies’ corrected each other for now. We were sent on our merry way with a follow up in 4-6 months.
We also had our genetics counselling after a lot of chasing on my part. I was hoping for more insight and information with regards to Dixie’s future. However, the only things I took away from that appointment was…
Dixie was ‘de novo’. Which means the extra chromosome was just bad luck and nothing we did (I didn’t like Dixie to be referred to as bad luck I might add!)
That we would have a less than 1% chance of having another trisomy baby (err no more babies thank you!).
Maisy wouldn’t be any higher risk when she came to have her own babies. That was a small comfort, because its a hard road.
What a shame I seemed to know more about T9M than she did, and the session turned around to her questioning me. I hadn’t seen the appointment go that way in my head!.
We also had a home visit by a lovely lady from Portage. Just a little intro to tell us about the service and to confirm that yes we did qualify (ughh I hate that word!) and on the waiting list we would go!
(FYI – Portage is a home visiting teaching service for children under 3 with additional needs – for us it’s provided for one hour every two weeks with a regular portage home visitor)
We also saw our Speech therapist again for a follow up at home. She did the usual listen while swallowing and concluded that although she didn’t think Dixie was aspirating her feeds, there was the odd noise that concerned her. The video fluoroscopy (VF) would give a much more accurate picture as to how safe her swallow was and until then we were left to continue with thickeners. She informed me the waiting list was 18 weeks.
Lastly something wonderful happened. I’ve spoken briefly about the T9M Facebook group I had joined, but not that the members are only at about 200 or so worldwide. One of those families lives 45 minutes away from us! 45 minutes!! What are the chances?! They also have a beautiful little lady who is slightly older than Dixie.
We agreed to meet up and it was the first time I could comfortably talk to someone about Dixie. And who I could ask questions. I don’t think I even took a breathe (for those who know me, it’s not completely unusual for me to be ‘chatty’ 😄) What a wonderful mummy she was, and still is. A friend for life. She probably has no idea how much I needed that time with her and her gorgeous little lady.
I was still a little low post Dr community’s appointment. I had already been discharged from my HV, and I didn’t know where to start to look for support up until this point. This wonderful mummy continued to be wonderful and found some local services for me to contact.
Here was my rainbow through the clouds. Hawthorn family support, and all the wonderful things that came with it!
It was a place for both Dixie and I to go once a week, every week term time. A nursery and sensory room for her and a little break in the parents room for me. And although it usually had a long waiting list, we were lucky enough to get a cancellation place. A Tuesday. And where I met the obviously named and incredibly fabulous Tuesday girls!
I could write about this place, the people who work there and the people I have met there for hours. I can safely say that it saved my mental state a few times over. Not only is it a great place for Dixie with wonderful staff who look after her, It’s a great source of information to access other services. And the family support worker is the absolute best at what she does.
It’s a safe haven for me. Personally I feel like I can speak honestly about anything and those girls will listen. And something else. I don’t feel alone anymore. I don’t have to sugarcoat anything because they get it. They understand completely, and that is liberating. All our children might have different challenges whether it be medical, developmental or both, but we’re all just mummies trying to do the very best for our kids.
And we’re all warriors!
I recently read another blog about how quickly your friendships with these other parents progress. It made so much sense to me. Some of these girls I’ve known months, some only weeks, and yet i can’t imagine my life without them now. Its a funny old world.
A new world to us. Im falling a little bit in love with it 💗💕💗