Alexis story

Alexis is the youngest of 3 (Annabelle 6 & Amelia 4), she was born on 28th September 2014 at 4 pound 15, induced 2 weeks before due date as she stopped growing in the womb.
We were both monitored weekly during pregnancy from 23 weeks and also referred to fetal meds at the RVI Newcastle upon tyne
which is where they told us Alexis would have one of 3 (downs syndrome, chromosome abnormality and another condition i stopped listening to the doctor by this point.They then asked to perform an Amniocentesis (prenatal test to test the fluid around baby) which i refused.
When Alexis was born there were no concerns about anything only down side was it took her nearly an hour to drink a bottle.

When Alexis was 8 weeks old she caught bronchitis and admitted into hospital where they performed a number of tests due to high fever (e.g lumbapuncture)
one doctor pointed out Alexis has deformed features and if she could be referred to genetics.
She was admitted for 4 days due to breathing difficulties. she ended up coming out of hospital with a NG tube and a continuous 16 hour feed.

17th Feb 2015 date of the genetics appointment at center for life, Newcastle upon tyne is where the doctor told us how sorry he was and she has wolf Hirschhorn syndrome.

May 2015 Alexis was admitted into hospital due to seizure activity where they rushed her into Adult resuscitation and then onto a nero ward where the nero
doctor told me Alexis has absent seizures and to start her on keppra. Alexis was lying on my knee while the doctor counted how many seizures she
was having at that giving time (which were eye rolls and looked like wind). she was in hospital for 7 days.

Alexis is under speech and language where she’s had 3 video florosify x-rays to see how she swallows, she’s also under the children’s physio team, community nurse,
diatision and visual team.

We attend weekly sessions run by the visual team to help Alexis as she has cortical visual impairments. she loves lights, faces, vibrating toys and hair.

Within the physio team we have corner seats and a standing frame, Alexis can stand in her frame strapped in but not stand without the frame also Alexis
can sit is she is supported on her back by the touch of finger tips she is ready she’s just lazy she can sit alone for a few seconds when she’s not realising.
She can roll from front to back and back to front but only by her choice if she doesn’t want to she wont she has a very strong head on her.

Alexis attends nursery 3 half days a week where they are brilliant with her she has 2 sencos and has come a long way since before she started with her
physical side and vocals.

Alexis now has a gastronomy also fed orally (only manages a few mouthfuls).
She starts full-time nursery sept 2017 at a special needs school she has also been approved growth hormone awaiting trail appointment when she is 4 years old (9 month away).
Alexis has started using vocal noises and on a few occasions had said “Hiya” she is now also sounding out “mam” beginning with “mmmmm” “maaaaa” “mam”.