Grace for Rett » Grace's Life with Rett Syndrome

The First Signs…

This is a version of our first post on our family website when Grace first began showing signs of Rett’s. We didn’t know at the time what was going on.

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Everyone has been asking exactly what happened to Gracie so here I am finally coming out and writing it so everyone will know. We’ve been concerned about her for quite a while, but never came open with everyone because we were waiting for answers. But then something happened and it turned from a ‘concern’ into a mysterious and unknown illness.

Grace was born on the 24th November (she’s almost 1)! She laughed for the first time at 2 months (1st milestone) on my birthday and only Frances could make her laugh :)She loves Frances. Then when she was 5 months old, she rolled over for the first time while Rohan and Tanya were around for lunch. After that, nothing. She never sat up on her own, never held a bottle, crawled, said a word or waved ‘bye-bye’. We thought she was just a lazy third child, always carried around and had brothers running circles around her. She always seemed very cuddly with her head on your chest.

We gave her time to catch up and never had any other kids around us her same age to compare her to so we didn’t think anything of it. Then last week, I had an 8 month old baby in my photo studio who was walking around, sitting up and engaging in ways which Grace never has. It really was a wake-up call and I suddenly saw things in Grace which I never saw before. 2 days later, we went to the Dr. and he said that she is clearly very ‘delayed’ and has missed all of her milestones ‘by far’.

In the meantime, Steven had been away in Africa for 2 weeks and when he came back, he saw quite a big difference in her, having been away and coming back gave him a different perspective than I had.

Last Monday, she began crossing her eyes and could bring them back if we clapped our hands or surprised her. On Tuesday, she was cross-eyed for most of the day and couldn’t straighten them. She started looking at her hands strangely, as if the was discovering them for the first time. When she ate biscuits, she choked on the bits rather than chewing and swallowing them. We took her to the hospital that night and said that although she’d always been delayed, we were suddenly seeing changes in her quickly. She stayed overnight and the next day, she had blood tests, EEG brain test and a urine test. The EEG was normal (no seizures). The bloods and urines will take up to 2 weeks to come back because they are testing many detailed things like looking her her genes, metabolic panel, etc. They will be doing detailed tests on her genes.

We went home after 24 hours and the next day (yesterday) she woke after 12 hours of sleep with a heavy head and promptly fell back asleep on my shoulder which she did twice in the day. She has never EVER fallen asleep on me like that before. Also yesterday, she was unable to roll over like she could before. She did so a couple of times, but not without 5 or 6 tries to get over. Also yesterday, she started playing with her tongue more than usual – chewing on it, thrusting her food out a lot and when she lays on her back, it seems to be falling towards the back of her throat. So last night for bed, we put her to sleep on her tummy and tucked her in real tight so she couldn’t roll onto her back and choke on her tongue.

A positive development is that in the hospital, she seemed to begin asking for her ‘baba’ when she saw her bottle and yesterday, while we were having a cuddle in bed, she turned her head towards Steven and whispered ‘dadda’. It was beautiful. Today, she is rolling over. Also today, she started having a strangely clawed hand which she gets fixated on bringing infront of her eyes and looking at. It is her left hand and also the left eye is the one that turns in the most.

In herself, she is happy – giggly, smiley and not in any discomfort and for that we are so so thankful.

We won’t see the next specialist until the 30th when all the tests are back but yesterday, I was hassling the Dr. who saw her in the hospital (the squeaky wheel gets the grease!) and told her about the ways in which Grace was going back in time and losing her skills day-by-day and asked how I was supposed to just sit at home for 3 weeks with a baby like this. At the rate she is declining, what would she be like by then? So after that conversation yesterday, I just had a call that her MRI is now scheduled and will be next Friday a week from today.

And don’t forget to send her happy wishes on her birthday in only 11 days! She will be 1 :)I will be keeping any cards, well wishes or blessings you send to her for her to keep forever and ever to know how much everyone loved her in her time of need.

God bless and keep checking back for good reports about our girl.

F a c e b o o k