Chromosome Disorders

Meeting Milestones

I fear that had Daisy not mucked about with her chromosomes, I would have been one of those competitive mums eager to show off when she met each milestone.  Regular milestones go out of the window with Daisy.  I have learned a lot from this and have redefined what success and achievement mean to me.

Babies grow so quickly and I think people often miss the tiny steps in their development.  With Daisy, it has been like watching it in slow motion, and it is amazing to see it unfold.  Because her condition is so rare, it is difficult to know what she will achieve.  She is now sitting, but we don’t know if she will crawl (she hates using her arms) and we are hopeful that she will walk but we can’t be sure.  Every time she achieves something new it is a huge celebration.  She has just learned to turn herself round while sitting;  I still have a tear in my eye every time I watch her do it.

It can be hard to watch other children her age doing things that she can’t.  The other day I saw some 2/3 year olds out on balance bikes.  I would have loved for her to be on a balance bike by now.  I can’t wait until the day I can watch her on one and I believe I will.

Of all the symptoms Daisy has, the hardest one for me to deal with, is the developmental delay.  I can’t fix it.  It isn’t going to go away.  I am a teacher and I watch the kids that struggle with their learning and it upsets me to think that Daisy will be one of them.  However, she will be the very best she can be and I will be her biggest champion.

When I was pregnant with Huxley I was excited about having a child who would meet regular milestones.  Then he was diagnosed with Down’s Syndrome and we were told he might have developmental delays and poor muscle tone.  My experience of a baby has been Daisy, who has very poor muscle tone, so I can’t say I know what good muscle tone feels like.  The neonatal nurses said they felt his muscle tone was pretty good all things considered.  The specialist Dr said that all children with Down’s Syndrome are different, that some are late with milestones, some meet them and some can be early.  So it’s a waiting game.

Huxley gave us his first smile at about 6/7 weeks.  I was so chuffed with this.  It was a good sign.  I have been making sure he gets lots of tummy time as I am determined to give him the best possible chance of building his muscle tone.  Today I put him down on his tummy and tucked his arms under his chin and he rolled over.  At 16 weeks old.  I was absolutely and utterly astonished.  I thought it was maybe a fluke so I went and found my phone to video him and put him on his tummy again.  He did it again, and I caught it on camera!!!!  I was jumping up and down and getting all excited.  Daisy was looking at me like I was mad.

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This wee man is going to be an absolute little legend.  I just know it.  I can’t describe how happy it makes me to watch him meet these milestones around the same time as most babies.

You keep rocking that extra chromosome my awesome little Huxley Bear.

 

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