I belong here now

[HBGirl]

I found out on Tuesday that my gorgeous princess has 22q11 DS. She appears, at this stage, to be mildly affected. She has bilateral coloboma, a laryngeal web and subglottic stenosis. We attempted to repair the stenosis but it caused airway collapse and ended in tracheostomy.

We spent 2 weeks in ICU and have now been released to ward for trache training. I am hoping to have her home by Friday if I am a quick study.

She has other markers like long, tapered fingers, small size and the cute ears. I guess we wait to see if she has learning problems or psyciatric difficulties.

I really don't know how to feel. I am not shocked, I knew she had this for some time but I am angry. I love her with everything in me and a label changes nothing. I guess I am scared for her.

She is so strong. We nearly lost her a few times in ICU but her will to live is massive.

She was back on the breast 2 days post trache, little toughie.

 

[Warby]

Don't want to read and run. She does seem like a fighter and it is clear that she gets her strength from you!

 

[sequeena]

:wave: hello glad to know things are going well x

 

[HBGirl]

We came home today. Today at her welcome home lunch she leaned over and started shoving my butternut in her mouth. We let her play as much as she liked. Talk about deciding you are ready. LOL

We have zero plans to wean but if she wants to play with food we are letting her.

 

[DonnaBallona]

welcome home with your sweet baby!

Hope things go smoothly for you and you find the support you deserve. XX

 

[Wannabe Mommy]

Welcome home and good to hear LO is doing well.

I just wanted to say that I have bilateral colobomas of the optic disc and it has had very little impact on my life. I have reduced peripheral vision in my right eye but not to the extent where I can't drive or have to make adaptations.

The only real impact has been that every time I go to the opticians and see a new person they freak out and refer me to hospital for a wide and varied selection of bulls** t from suspected brain tumours to genetic illnesses I don't have

 

[HBGirl]

It has been confirmed that the coloboma is of her iris. She is very far sighted and will be getting corrective glasses next week. They say by 3 years she won't need them.